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Patdeb Offline OP
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Tomorrow is the last Chemo and this week 5 more radiation treatments to go . Starting yesterday he is unable to eat anything without excruciating pain. He is able to drink some water out of a straw. Through 6 weeks of treatments he has been eating and drinking.

Any tips on how to get him through this last week? He is on pain meds that we have had to increase the dosage daily. Now he gets chills and pain every time he drinks.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Welcome to OCF! Sorry to hear your husband is struggling. At the end of treatment and the 2 or 3 weeks afterwards it is the worst part of the whole treatment program. Your husband MUST continue to drink and get nutrition in somehow. It sounds like he does not have a feeding tube. That would be the easy way, just put it thru the tube.

Get ensure, boost or order some Carnation very high calorie thru the Amazon link in the green box. Push him to get 2500 calories per day. Try getting some magic mouthwash he can swish and spit before he attempts to eat or drink. It will numb his mouth for about 15 minutes which should be long enough to get some nutrition. Magic mouthwash is made of several different concoctions, mine was lydocaine, maylox and benedryl. Its prescription so if he doesnt have this, ask the doc. If necessary he can use pain meds to help ease the discomfort and enable him to eat. Most of us used the fentanyl patch to help take the pain away. Dont worry about using pain meds, it does not help a patient to not take them.

We have been there and know this is the worst of it. Soon it will be over and he can begin to recover. Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Patdeb Offline OP
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Thank you Christine! He does have the magic mouthwash with lydocaine and maylox, it does not have the benedryl so maybe that would help? The Dr. also gave him Gelclair. He is on Oxy but I have never heard of the patch. I have tried all of the drinks but as of yesterday he was able to eat only oatmeal with a lot of butter which got him up to 1500 calories and water. Today barely anything, a few bites and sips. He said everything burns like fire and after he takes a few bites gets chills because of the pain. Final home stretch and I just wish I knew more to comfort him.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Sounds like you need someone to have another look at his pain meds. My Alex was on 3 kinds during that last week and then for another 2 weeks. He had long acting oxycodone (Oxycontin), short acting oxycondone(Endone) and Fentanyl pathces. Still hurt like blazes but not so much that he had pain and chills.

Please talk to your doctors, this is too much pain for him.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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Be forewarned that the radiation side effects will continue for several weeks after "beam off" (and can actually get worse). The mucositus will be a problem and others have already mentioned pain management and nutrition. It is vital to stay hydrated and also take aggressive steps to mitigate constipation, which is caused by the pain meds.

Personally I had Fentanyl, 72 hour time release patch with Morphine for breakthrough pain (Morphine is the fastest acting oral pain relief). Pain management was critical in the timeframe of post Tx - but so was constipation management. You will want to have ongoing consults with the nutritionist about that. For many of us it was the WORST part of recovery. I spent many hours curled up in a fetal position by the toilet.

My trick was to take a few Morphine tablets, swish and spit with Pink Magic then I had about 30 or so minutes to eat and drink. A feeding tube probably would have made life a lot easier...


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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If your husband is not able to get enough calories daily, he will feel awful. Many people have gotten near the end of treatments only to end up getting an emergency feeding tube. There is also a nasal tube that could be used for a short time to help him get past the next few hard weeks. No surgery to insert it or to remove it. Tomorrow speak with your husbands doctors about upping his pain meds and about a feeding tube (probably a nasal one would be enough). That should help make it a little easier to get adequate nutrition in.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Hi,
I don't want to alarm you, but the next week to 2 weeks after the last radiation tx are pretty bad. Wednesday will be the end of our 2nd week. My husband is just beginning to eat soft foods again. He has lived on Ensure for the last 4 weeks. He has a PEG tube, but hates to use it.
If your husband can, he really needs to just increase his pain meds and know that he has to hunker down for a few weeks. But...it will get better. We were literally just there!
I know this is hard to hear. We hated when we got these kind of posts on our questions, but they were right. Sometimes just KNOWING it will be bad helps to not be afraid of it being bad. Does that make sense? Pain meds are your friend. If whatever he is taking isn't working, get something stronger.
The 2 of you are NOT in this alone. Please know we all know how you are feeling. You can pm any of us for more support.
Blessings,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Hi there... Everyone here has given great advice. Your hubby has one great so far. - remind him of that! If he is going to continue food by mouth - make it liquid, invest in som nsure, boost, or the like, toss a spoon of protein powder in each bottle if you can, have him take a pain med, and wait until its working (or at least has taken the edge off) then swish with magic mouthwash - and chug his food (liquid nutrition) - then hopefully he can sleep off the meds.
It worked for me during the worst of it...
Good luck - tell him to hang in there!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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I got a nasal tube post radiation and it was a lifesaver. Two min install sitting up in a chair as they feed it through his nose into his stomach and a x ray to make sure the placement is correct and he's good to go. After 2 weeks I pulled it out at home myself, with my docs blessing.

Definitely get the Carnation Instant Breakfast VHC (as in VERY HIGH CALORIES). The small 8 oz can contains a whopping 560 balanced calories and I preferred them room temp. Get them from the pharmacy dept at a store like Walgreens, no prescrip necessary. They can get them to you in a day or 2. Have him "drink" 5 or 6 cans and 5 or 6 8 oz cups of water EACH and EVERY DAY.

As others have warned his worse is most likely yet to come as the 2 to 3 weeks POST TX are usually our worse time so don't hesitate, get this tube done now!!!


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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We thought this was all Easy up until last week. Even though the eating diminished he was able to eat at least 1500 calories of oatmeal with butter and whole milk every day. It was like a switch went off over the weekend. Now a mere sip of water is like razor blades and he goes into a chill and shaking spasm. The doctor did update his does of oxy to 15 mg every 2 hours, the patch began today about an hour or so ago, the magic mouthwash and Gelclear which did nothing. Also, to add to it, he was supposed to have chemo today and his cell count was below 1000 (whatever that means) so they have him on antibiotics. GREAT advice on the constipation which he is starting to experience. He has had nothing to eat or drink yet today that did not cause excruciating pain. Giving it some time to work. We meet with the Radiation Oncologist tomorrow after his treatment. Should I ask for Morphine? Can they do the nasal feeding tube during radiation? How do they work around the mask? 4 more treatments to go. He said as long as he doesn't swallow he's fine so does have some rainbow moments at least.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Every day your husband does not get enough calories will make him feel worse and worse. When I was about finished with my treatments, I was struggling to get calories and hydration. I ended up being hospitalized for dehydration and malnutrition. I really thought I was dying, thats how sick I was. I was unable to even walk, my son had to push me in a wheelchair. You can always get the doctor to give him IV hydration fluids. Its outpatient and will make him feel so much better. At my hospital, they did hydration in the chemo lab. Ask! Make sure you have a good talk with the doctor and tell him that your husband is not able to get enough calories in. This is very very important. Tell the doc if you feel your husband needs a feeding tube. Sorry but I dont know how a nasal tube would work while he is doing rads.

The patch will take about 24 hours to kick in. It probably will make the constipation even worse. Once it kicks in your husband should need less of the other pain meds. They can be used for any breakthru pain. Ask the doc about what dosage your husband should take since he is now on the patch. Make sure to follow the patch directions EXACTLY. Never bend it or cut it. Also your husbands other meds can come in liquid form. If they dont already, ask.

I know its rough right now and the next few weeks are likely to get worse. But by the end of the year, your husband will be feeling much better. It does take a long time for recovery, celebrate all the small advances.

Any questions, please ask and we will guide you.

Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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He needs roughly 2500 to 3000 calories each and every day and 48 ozs of water each and every day. Calories so his body can fight and water so he won't get the dreaded constipation or other more serious complications.

He will snowball out of control very quickly on his current path unless immediate action is taken to get those calories nad hydration into his system.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Patdeb, I'm sorry indeed to read all this. But the end is in sight! I think you'll find, maybe already are finding, that the Fentanyl patch is helping. I too used it plus Oxy in the last weeks of radiation. I'll let others comment on the nasal tube.

You mentioned magic mouthwash and lidocaine. I used the straight viscous lido, held it in my mouth for a full ten minutes before I was even able to try a can of liquid nutrition. And it still barely helped. So I definitely feel his pain.

I personally found morphine gave me an upset stomach and that Oxy was better. But you should certainly ask about it because we're all different. As far as constipation... yeah, that's a very tough one. I tried everything you could swallow or suppositate (I just made up that word) but eventually, alas, it was only my RO nurse's suggestion of investing in a box of rubber gloves that did the trick. Painful, but temporary.

Hang in there, both of you. As others have written, things are unfortunately likely to get tougher before they get easier. But the rainbows will become more frequent.

My thoughts are with you. You are definitely not alone in this... we're all here for you both.



David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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I wish I had found you all weeks ago! You are all my heros for being through this and being here to help others. I am a two time breast cancer survivor and I can tell you that nothing I went through holds a candle to what you all have survived. Great advice on the patch not kicking in until tomorrow. I just talked to his nurse and she increased his oral meds until it kicks in and we are taking the suggestions of holding the wash in the mouth, doubling up and chowing down for 30 minutes tonight. For the remainder of the week I am going to push IV fluids for him since he is there for radiation every day anyway. One more chemo later in the week if his blood counts go up. Did you all have a problem with coughing up thick glubs of phlegm?


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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I had the nasal tube and it is no problem with the mask, you just unhook it and they feed it thru the hole by the nose...I had a lot of problems with mucous in my mouth, this may sound gross but I "blew" my mouth much like you would blow your nose, right into a kleenex (went thru a lot of them) but it really helped me get rid of it. I used morphine (liquid) because oxy did nothing for me...and the fentynol patch. Take the pain meds, try to eat and rest...good luck to you both you're almost there!


51 yr old female...dx 12/28/07, partial gloss 1/23/08, nd 3/5/08. Opened the neck AGAIN, 5/21/08. Non smoker, occasional drinker. Additional node pos. 6/26/09, Starting rads and chemo (5-fu, Cisplatin) 7/13/09 T1N2MO. Almost 2yrs out of treatment and feeling great....
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No other pain medicine is as string as fentanyl. At my highest, I was up to 150 mg. That was right around the time I finished rads. If your husband does not see a big improvement in his pain after the patch has been in place 24 hours then tell his doc. Im just a patient but I would think he would need a minimum of 50 or 75mg right now. Just trying to give you a guideline in case he is only on a low dose of 25 or 50 mg. Its always better to slowly increase or decrease this medicine. Very important, no hot showers or baths either!

David is right with the calories your husband needs right now. Dont think he can make up calories or water the next day. Use the chemo lab for hydration. He still must continue to swallow every single day or he could have even bigger troubles down the road. I would drink ice cold yoo-hoo. It felt soothing in my burned mouth. Even though I could barely taste it, the yoo-hoo worked for me plus it has lots of calories. Another high calorie drink is chocolate milk.

As for the phlegm, try musinex or robotussin. You can check with his doc or nurses what would work to help. He might even benefit from a suction machine. Check with the nurses about doing that on his rad. visits too. It takes only a couple minutes but will give him a big relief after its done. Some people get a suction machine for at home too. Ask for one. Sleeping on a few pillows on on his side of the bed raised will also help with the mucous. The thick phlegm will continue for about another 4 - 6 weeks. Then it will be replaced with a dry mouth which will force him to carry a water bottle everywhere. There are some biotene products that can help with the dry mouth. Some people take a medication to help stimulate saliva. Thats nothing to be concerned about right now.

Even though you just found OCF, at least it was while your husband needed help. Some people dont find us until they have finished everything and are seeking help with after-effects. Dont worry, we will make the most difficult time alot easier for both of you. One thing that can help is think of anyone who offered to help you with your husbands illness. Let them help. Give them a chore to do and it will take some of the weight off your shoulders. It could be something little like walking your dog, doing a load of laundry, picking up a prescription, grocery shopping, or even visiting your husband so you can take a few minutes for yourself. Im sure you could use a break too.

Here is a list of easy to eat food that might be helpful to your husband.

List of easy to eat foods


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Yes the thick mucous is the first stage of dry mouth and we all experience it usually late in the rad sessions so he is right on course. This typically lasts a few weeks and can/will get pretty disgusting. I walked around with a Styrofoam cup in my pocket and constantly spit all day. At night I would awaken with a mouth full of that crap and have to run to the nearest sink. Sometimes it even invoked a bout of nausea. When he leaves this period he will be left with dry mouth, the severity of which will be the result of the amount of radiation damage to his saliva glands. Most of us recover a great % of our saliva but his patience will be tested as that can take every bit of 2 years.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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How about a feeding tube? Your body can't fight and recover without the proper hydration and nutrition. The affects of treatment don't end because the treatments do.


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
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We saw the Dr yesterday and he doubled the patch so up to 50 mg, he also gave him an rx for straight lydocane. When he is not swallowing he feels terrific and looks like he has never had a sick day in his life. Even with the swallow, he got through 1/2 bottle of carnation before it started burning so bad he had to stop. Still no water. The doctor is trying to avoid a feeding tube at this late stage. Going to look at boost or other alternatives that have higher concentrates. He will be given extra hydration tomorrow is his counts are up and they are able to do his last Chemo. If they can't do the Chemo I am going to demand the hydration. Waiting to blink for this nightmare to be over, asking him to eat or drink is starting to frustrate him and I know he is not mad at me but in pain and mad at the situation. Thanks as always for all of your help.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Yep everything you said and all the suggestions are on the money with what Ron went thru also. He did pull his feeding tube out twice, the last time it stayed out so he head none during radiation. He also had me going nuts with not eating or even trying because of the pain, I cried he had lost so much weight he looked like he was starved near death. BUT he hung in there he also didn't have any chemo. But maybe that is why he is getting chills, he has an infection which is one of the bummers that go with the chemo if I'm correct. But excellent is that Carnation Instant Breakfast very high in calories and the one Christine suggested also. Hang in there, the light at the end of the tunnel is coming soon.


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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Get the nasal tube!

Get Carnation Breakfast VHC which has 560 cals per can. You can get that from Walgreens but only thru their pharm dept. No prescrip necessary.

Get plenty of water down in him daily!

If your doc doesn't see these immediate necessities, switch doc ASAP.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Mike did a nosedive off a cliff that last week as well. Just like you describe, the treatment course was somewhat bearable. He had a feeding tube and continued to swallow and drink by mouth. Then Memorial weekend he crashed so hard I thought he might die. I found just sitting with him quietly helped. He tolerated very little but at least some of my attempts at the tube feeding, and would not swallow anything.
After that weekend his Radiation doctor precribed IV hydration for a few hours which helped a lot. He was allowed to get it whenever he wanted.

Ginny


Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
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Right now and the next 2 or 3 weeks is the worst of the whole ordeal. It is critical that your husband gets proper hydration and nutrition. If he is not able to get 2500 calories and 48 oz of water in every single day then he needs a feeding tube. I can not stress enough how important nutrition and hydration are!!! I ended up being hospitalized for malnutrition and dehydration right about the same time as where your husband is right now. Ive watched others struggle and I warned them of being hospitalized for not taking in enough and Ive seen them go right down the same path as me. Watch him carefully and make sure he really is drinking enough calories and water. He cant play catch up tomorrow for what he cant take in today. If today he doesnt get 48oz of water and 2500 calories demand a nasal tube. It does not help the patient one bit to struggle so much. Same goes for the pain, if the patch still isnt enough after being on for 24 hours ask for it to be increased again.

One last thing, take a few minutes every single day for yourself. You dont want to get burned out. Being a caregiver is a difficult job. Im sure your husband appreciates everything but he probably feels awful right now. Not enough calories and water will make him feel even worse. Believe it or not, next month this time he will be a new man! Its all down hill from there.

Good luck!!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Congrats....You're done with radiation today, right?? How are things going. Thinking of you guys!!
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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His last radiation is tomorrow. 11-11-11 at 11 on Veterans day! Since his service in Vietnam may have contributed to this is it fitting and great karma!. Losing track of time so I appreciate this forum to look back and keep myself straight. It has been rough this week with Tuesday in the DRC at Moffitt to get fluids. They found that a fentenol disovable tablet helped him to the point he drank 2 glasses of water! Yeah! Yesterday was a pharmacy nightmare getting authorizations and a pharmacy that actually carried it. Finally got it today and still not enough fluids and food but still forward moving with 3 full 12 oz glasses of water and a bowl of butter laden oatmeal. Chemo this week has been canceled twice now and they are going to postpone for a couple of weeks to get his wbc count up. Right now we are at 11.5 . Other than that battling with the heavy mucus so any pointers on that would be helpful. I think tomorrow will be a great page turner knowing he won't have any more treatments. He will have a full day of the new meds and we can relax together all weekend. Thanks as always for helping us on this journey!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Here is some info I posted to you on Nov 8th regarding the mucous....

As for the phlegm, try musinex or robotussin. You can check with his doc or nurses what would work to help. He might even benefit from a suction machine. Check with the nurses about doing that on his rad. visits too. It takes only a couple minutes but will give him a big relief after its done. Some people get a suction machine for at home too. Ask for one. Sleeping on a few pillows on on his side of the bed raised will also help with the mucous. The thick phlegm will continue for about another 4 - 6 weeks. Then it will be replaced with a dry mouth which will force him to carry a water bottle everywhere. There are some biotene products that can help with the dry mouth. Some people take a medication to help stimulate saliva. Thats nothing to be concerned about right now.

Last edited by ChristineB; 11-10-2011 08:35 PM.

Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Pat, while the end of radiation is to be welcomed please do understand that most likely his worse time is yet to come and with the end of daily radiation also cuts that lifeline to the people that know how to treat his problems. Can't emphasize enough the need to make sure he gets 2500 - 3000 calories and 48 ozs of water each and every day.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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All great advice! I am also going to try the meat tenderizer that was mentioned on another chat string. Who knows. I also listened to the advice about taking care of myself. I took this week off of work so I could drive him to his treatments and take care of him. Next week I go back to work and am fortunate enough to work 1 mile away so will be able to check in frequently. One of the hard things to do to is keep an active man from being bored but until his WBC goes up I don't want him out and about. As far as getting him to eat and drink, he has been a physical fitness buff for years which I am sure has helped him a lot. Well he has always been on me to do the same so here is my plan, for every glass of water I will bike 10 minutes for every meal I will box 10 minutes etc. Kind of make a contract. Now for the just great news. Last day of treatments and Moffitt called, both machines are down and if they can't get them working today they will fit him in tomorrow. UNREAL.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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wow sorry to hear that but hang in there it will all work out for you.


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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Jeesh. You didn't need that! But you're both extremely brave souls and the thought of only one more ride in the machine, as I called it, is great even if it's delayed another day. And of course David is right about the next few weeks. They might be very tough. But you'll both make it.

All I can add to Christine's comprehensive treatise on excess mucous is rinsing with a baking soda/water solution a few times a day. As they say about chicken soup for a cold... it can't hurt!

Hang in there!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Well folks, they got the machines up and running so we were able to complete radiation yesterday, 11-11-11 at around 1. DONE, working on calories and getting the WBC up so we can finish the last does of Chemo. This morning was great, fantastic, wonderful! Pat was eating oatmeal and egg salad and drinking a lot of water, looking like a champ and lifting weights. Towards the late afternoon and evening it kind of fell apart and even with pain meds wasn't able to eat but still drinking some. Got Musinex and that has helped and trying the meat tenderizer tonight. We really appreciate everyones well wishes. Seeing a light at the end of the tunnel!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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I have not taken the time to thank you, it is really nice to chat with someone that is basically in the same spot, fast forwarded by two weeks. Please know we are thinking of you too and wishing you a speedy recovery. I think the metal hooray that the zaps are over are helping a lot.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
Joined: Nov 2011
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Has anyone had a problem with the ensure? He has not been able to drink that for weeks and I am not sure if it is something in it that makes it burn so much. He has to spit it out and gargle every time he tries. I have tried Carnation with the same results. Was so great to see him eat, if even a bit today.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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We are almost 2 1/2 weeks out post tx. Kevin is still dealing with the mucous, but it is getting better. It would probably be a good idea for your hubby to go for fluids 3x week. Hopefully he is doing that. I can't remember reading anything but a recent one time fluids. Even our second week out Kev went for fluids. It just helps give him energy. I have heard the suction machine is a great thing. We didn't do it though, Kevin just didn't like the idea. He did use peroxide rinses often, as well as the magic mouthwash. There are times now that he coughs and pieces of skin come out. We know they are scabs, so some healing is happening for sure. What is the chemo they are waiting to do? Is it Erbitux? If so, keep in mind that that stays in your system for another 2 weeks after the last tx too. Kevin is just getting past te last of the rash. His outside burns are finally beginning to heal also. That has take almost 3 weeks. Hang in there. Like I said before, know what's coming and hunker down and do it. Then you can start living again. We even went to Lowe's yesyerday!! Man Heaven!!! LOL


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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I know that helps. We went through that high too. Ahhhh, no more zapping. Kevin tends to be a too positive thinker though, if there is such a thing. When he didn't instantly feel better he got down for a few days. Better now though. You're very welcome! I know it is so nice to know we are not alone. All of us, caregivers too. I never would have imagined how hard this would be on us. Their our guys!!! We hate seeing them suffer. It sounds like yours is as tough as mine, so that makes it harder to see them beat down by something. We will conquer and get our guys back though!! Keep in touch. Kevin drank the Ensure the whole time. He would take his Lortab and 20 minutes later drink up. Last night he had spaghetti with Alfredo sauce and spinach on the side. He's really beginning to eat again. Now we are searching for bland enough foods so it doesn't burn. Big progress from 2 weeks ago though. He doesn't like oatmeal!!!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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As the OCF resident contrarian, my advice is somewhat different.
I refused a feeding tube the first time I had oral cancer and like your husband found it very tough at the end. I had not found OCF at the time or else I would have panicked since my doctors all agreed that only 2000 calories a day would get me through and I could barely make that. David and Christine are right about another 500 or 1000 calories on top of that is much much better but I thought you would like to know that at 5'11 and a full sized male, I did fine with 2000 calories. I just could not force down another sip of Ensure Plus if I had wanted to and I'm glad I did not know it was technically "not enough" calories.
As far as Ensure Plus, I would take a sip, swallow, then gag and spit out mucous. Take a sip, swallow, gag, spit, It took about a half hour a can but I was bound and determined to avoid dehydration and malnutrition. It worked as I never had to go to the hospital for an IV or treatment, not even once.
Your husband is way ahead of the game if he can actually swallow real food like oatmeal. I lived on Ensure Plus (more calories than Ensure, less than VHC) the month before TX ended and two weeks after that before I could do oatmeal.
Last but not least, I could not have done it without the Patch.
Keep the Faith
Charm

Last edited by Charm2017; 11-13-2011 08:09 AM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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I think for right now we have settled into a semi- early healing pattern. He is on the patch, 50 mg which was upped from 25. They also put in on Fentora ( a dissolve in the cheek pain pill) which he takes before eating. It has to be ordered by most pharmacies and is very expensive, but thank goodness for good insurance! Liquid morphine did not work. Anyway, with that he is able to eat his oatmeal and we have now added egg salad and about 4 glasses of water before things start tightening up and hurting again. When the clock reaches 6 or 7 he is done, in pain and on the recliner for the night. So we are going to hit all the eating we can during the daytime and not try in the evenings. When he did go to the ER to get bloodwork last week his readings were all good other than his blood counts, but no signs of malnutrition and just a minimal sign of dehydration. He was able to drink up through week 6 so I am sure that helped. The chemo he is on is Cisplatin and will be rescheduled within the next week or two. His skin is amazing and almost healed up, just red, no more scaling. We used Aloe Vera throughout and he just has sores on the back of his neck that we had neglected. Also, thank you so much for the meat tenderizer tip!!! With a few gargles and rinses it really does thin the mucous!!!! Now that he is eating more and we know the pattern, I am not holding him to the 2500 calories since his bloodwork has been so good, he is 5'7" so I think requires less, we have a daily goal of at least 1500 but man once he can eat again, ribs it is! Thanks as always for your caring and sharing!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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When you get a chance, please add a signature so we are able to help you easier. It doesnt have to be anything fancy, it just lets us know the history so its easier to give assistance.

Click on the "My Stuff" tab, on the drop down menu click on "Profile". Scroll to the bottom and type your info in the white box.

Push the water. Cisplatin is very hard on the kidneys and needs to be flushed out of his system. Watch for any change in his hearing as that is another very common side effect.

Best wishes with one last treatment!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Update, they canceled the last Chemo. Said protocol is to do the 3rd one at the same time as Radiation. Since his blood counts were below 900, I guess they figured that it it moot now by the time his body builds back up for it. Now we are just struggling day to day with recovery. Still on oatmeal and egg salad in the morning with water and doing pretty well, the afternoon one is more painful but he still gets it down. We are still in a pain spiral after 6 even with the pain meds. Tonight is the worst, sore jaw, can barely talk, indigestion and a lot of pain. Is this normal? Mucus is still a huge problem, but still doing the meat tenderizer and it brings a lot of relief. Nights really suck right now.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Debbie, dont worry about skipping the last dose of chemo. I also didnt get the 3rd dose. There are several others here who also bypassed the 3rd round.

With his numbers so low, has the doc suggested a shot to boost it back up? I think one of the meds your husband can get to boost his white count is called neulasta. There are a few different ones that will help your husband get his numbers back to where they should be. Ive had the shots too.

Unfortunately your husband's side effects are normal. Oral cancer treatments can be brutal!!! Only a few more weeks til he will begin to feel better. take it day by day or hour by hour is its a bad day.

Best wishes with Pat's continued recovery.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Hi, have you tried soft boiled eggs?My husband lived on them throughout the treatment and the Carnation VHC. That seemed to go down easily. The eggs were soothing, oatmeal was too rough for him. We also were able to do pancakes that had smooth edges. He soon moved to pasta and spinach. I hope that it all subsides soon. I hope that this helps but we are three months out and he is eating steak, fish, lasagna, omelettes, french toast on soft bread, yogurt and soup. Keep trying things, it will all get better soon. My hubby was very discouraged and bored with his diet but each week he tries something else and now things don't taste like wallpaper paste any longer. Persistence is the word of the day.


caregiver for husband
diagnosed with oral cancer May 2011 after 6 mo
node lft side and several in jaw involved
Base of Tongue Stage IVA
7 weeks radiation
Cisplatin-3 chemos (beginning,middle,end) IntraV administration
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Pat, all sounds normal and as others have said he should "walk out of this tunnel" in 2 to 3 weeks and begin his recovery. Re the mucous, be prepared for when this phase ends the dry mouth phase usually begins. For most it's really severe at first. Not painful just really really DRY. I had to keep a water bottle in every room of my house and every car was equipped with several bottles as I would always seem to leave my bottle somewhere in a store and not remember until I was driving off. The dry mouth phase along with his taste will recover slowly over the next 2 years until it reaches his new normal. Tell him that he needs to be patient as we have not found anything that speeds up our post Tx healing process.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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So glad to hear about the chemo, I had my concerns and it makes me feel better. I asked Pat's onc about the shot. I got it several times during my chemo for breast cancer. He said that it is not necessary so we are just being very careful and staying out of public places. Unfortunately we are staying away from the grandchildren too since they have runny noses. Good news, yesterday I came home for lunch and Pat was eating a cream soup, another new item on the menu!!! Yesterday things improved a little bit and the evening was easier by adjusting some meds. I am off tomorrow so think it is time for some therapeutic out of the house time, maybe up by the water. I read a couple of things yesterday, one was using pineapple juice to help cut the mucus and the other was Aloe Gel mixed with water to help heal the throat. Your thoughts?


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Sorry but I have not used either one. I would suggest asking the doc. I would think pineapple juice would burn his mouth. When someone is just finishing radiation everything burns a overly sensitive mouth. Even regular water bothered me, it tasted burnt and it hurt to drink.

You are smart to keep your husband away from young children and crowds til his immune system bounces back. Another shot to boost white counts is procrit. Check with your husbands MO about if he needs to get the shots. If his numbers are that low, he should get a shot.

Glad to hear your husband is doing a little better with eating. It will be baby steps for a while then you will begin to notice his recovery is going better.

Take it day by day smile


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Pineapple hurt my throat whet I was getting treatment. The first thing I got down after I was done treatment was warm tea with milk. To me, 7 weeks out, warm tea still tastes better than water and feels good on my throat.

I hope this helps.


scc bot stage IV diagnosed July 2011 - 52 y/o
concurrent cisplatin and rad started 8/8/11 finished 9/26/11
Peg in 8/26/11 out 11/14/11
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Thanks! I am going to insist on blood work on Tuesday when we go for a follow up with his Radiation Oncologist. I thought it was strange they were not doing anything to boost him up and will definitely be questioning that. Still struggling with the night time crashes. About 5-6 pm starts getting chills, pain and fever goes up slightly although still under 100. Looking forward to getting out tomorrow together and just chillin.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Hi Deb,
I don't understand why they didn't jump on the low counts. That should really be addressed to your medical oncologist. He shouldn't be having a fever at all, I wouldn't think. I'm not a doc though. Kevin got the Neulasta with each Cistplatin tx.
I'm glad Pat didn't get burns on the outside of his neck. Kevin STILL has open sores there, though they are almost gone. We figure 1 more week and he should be bandage free.
We also had our Cistplatin before radiation, then Erbitux with radiation. I think it's interesting how different docs handles things.
I think I also told you Kev has pretty much eaten eggs everyday. Not softboiled though, we scrambled them and added a little cheese.
It sounds like getting out is a good idea. Just remember to be proactive about the low counts. I hope you have fun tomorrow!!!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Thanks Kathy! Today was french toast and breakfast together! Progress! Our big celebration will be ribs someday, Pat has been craving them since he hasn't been able to eat "normal" food. We are going to try the eggs and cheese tomorrow. We have a friend that is finishing his first week of treatment and you are so right about different doctors and different methods. He has the daily radiation and chemo every week for 6 weeks, 6 hours each time. We were advising him to be sure to take his pre and post nausea meds and he let us know he doesn't have any.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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With a count that low the low grade fever and chills are concerning however everything I've read says to get to a Dr if the temp goes to 100.5 or greater. The important thing is to minimize exposure as his body really won't have the tools to handle infections or illness. The flu at this point would wreck him so hand washing, minimizing exposure and making sure he's hydrated and good nutrition is about the only thing you can do if he's already getting Neulasta.

Debbie, you're doing a great job by the way, keep up the good work! Caregiving is the hardest job on the planet and you're rockin it.

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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So true Eric. You are rockin' it Deb. I KNOW exactly what you are going through! You really are doing a good job.
How was the fever tonight? He ISN'T getting the Neulasta, right?
Did you get the outside time today!! It was beautiful here, but quite cold. We actually had snow on the ground this am. Yuck!
Hope you're having a good night.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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We didn't get out the other day, BUT, we did get out today since I had an out of town meeting in Orlando. Pat came with me AND went to the mall, after my meeting we went to Steak and Shake and he ACTUALLY ATE french fries and a milkshake! This morning a cheese omelet before we left. This may actually be his first 2000 calorie day! We are still pretty much in shut down mode after 5ish, that's when the gunk starts and the throat dries out and starts getting painful, any night time tips would be appreciated. Temp is still slightly up just at night but never over 100. Neck is totally healed and never looks like anything was done. We see the Dr on Tuesday and I requested bloodwork. I am also going to talk to them about taking a culture of the mucous just to make sure there is no infection since I have a sore throat and drainage (Pat thinks it is out of sympathy :-) . Anyway, GREAT day and 1 week and 2 days after the final radiation see a HUGE difference. One thing that really helped was an old school pharmacist that advised me to give him and OTC antihistamine. This has worked fantastic on the build up of mucous at night. The outing really did Pat good today and the weather is not an issue, we are in Florida and it was 84 today :-)


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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He seems to be one of the "lucky" ones that recovers quicker than most, at least let's hope so.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Thank you David, we are hoping so. We have a follow up today including bloodwork so are hoping for the counts to be up so we can enjoy some time with the grandbabies on Thanksgiving. Last night was a rough one that the pain pills did not even touch and slight temperature every night around 6 is still popping up. I still feel he may have some infection and will be talking to the doctor about whether the 5 days of antibiotics were enough or if he would benefit from another dose.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Hi Deb,
What happened at the Dr's? Anxious to know how you are.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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We had new bloodwork and the Dr. did not seem concerned about the counts, he also gave us an all clear to have the grandbabies here for the holidays. We are still being careful but Pat has survived Walmart and just uses a lot of Germex. No comment he has had cabin fever! We are 16 days out from the last treatment, he has lost in total 20 lbs so we are working hard to get some meat back on his bones. Challenges we are still facing: Since he lost so much weight the pain patch had to be reduced, we though he was ODing and went to the ER. He is still struggling at night with eating but the fevers are gone finally. Thanksgiving he could barely eat and the next day was able to so eating is still hot and cold. We are adding things in daily and his ultimate goal is still to be able to go out for ribs! We have decided that going to a buffet will be our next step so he can experiment with different foods without wasting them. The mucous has thinned thanks to the aforementioned Pharmacist that recommended the antihistimines. Day by day now and seeing baby steps each day.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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That's great news!! Kevin has been out quite a bit the past 2 weeks. So far he's been healthy, so I think his immune system has kicked in. He has a sedation scope on the 6th and a high contrast CT on the 20th. Nervous, but praying and letting God have it!
I bet it was wonderful to have the grandbabies there! Our 7 year old granddaughter was here, but our 8 year old granddaughter lives in Alaska. She lived with us for the last 2 years, so I missed her horribly.
I'm glad the fevers are gone. That would have worried me, but it could have been from the pain I would think.
Thanks for the update. Talk to you soon.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Be patient with his recovery. I didn't start to gain weight, despite eating tons of fattening foods, until at least one year had passed.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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I wondered about that David. Kevin has now lost 40 pounds and has been eating quite a bit. He had lost 36 lbs at the end of tx. We went to the docs today just to have a spot on his tongue checked for infection and he had lost 4 more pounds. I was really surprised. He was a bit overweight to start with and now looks great, (not the diet plan I would recommend however!), but I wouldn't want him to continue to lose. Why do you think you continue to lose? Did increasing calories help. Sounds like it didn't with what you said about fattening foods. Also, how long did the mucositis hang on?
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Thanks David, he has also started lifting weights and working out again so I am not as concerned about him gaining weight as I am making sure he gets his calorie intake in. He is starting to be able to take some of his of the vitamins he was taking for his work outs so I am sure those will help with the cell repair and weight gain too once he adds the whey protein in. Every day is another eating gift and tonight's Stuffed Shells in marinara sauce went down with no problem (our first attempt at tomato sauces). Reminder the ultimate goal is Ribs! Kathy, Pat still struggles with the mucous too, the meat tenderizer gargle rinse does work as well as the over the counter antihistamines. He still has a bothersome sore on his tongue so was wondering about that and what to do about it. Will be thinking about you and praying the tests all come out fantastic!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Asking for advice on sores on the tongue. I searched the forums but could not find a specific answer on what to do for it. Pat just has one place on his tongue that stays very irritated. Is is normal protocol and should we have asked for maintenance dosage of antibiotics? I just want to be sure that we are not letting anything go that is not "right" as though any of this is "right" . I am so thankful to have found you all, thank you for your help!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Hi Pat:
I've had all sort of sores on my tongue, even though what I had was tonsil cancer - I guess it's a carry-over from the treatments. There are a number of Magic and Miracle mouthwashes that ease the soreness, and your ENT can prescribe one to your drug store if you called. My mouth stays sore most of the time, even though it's been almost 4 years since my treatments. I'm sure others will join in when they see your post, so you'll get plenty of suggestions. Hope you find one that will help.
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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My thoughts on the not gaining weight too soon post Tx is that our bodies are continuing to expend a lot of energy during our recovery phase (both mentally and physically) in addition to normal activities and therefore need addition fuel. Not a doctor here so keep my thoughts in perspective.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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So, victory dance, no pain patches all day and eating without the pain pill before meals. Tonight, cannot warm up. Can this be a withdrawal of quitting all of the pain meds all at once


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Hi Debbie,
Congratulations to Pat for getting the radiation! It sounds like he is doing really well. Simon alternated between chills where he couldn't get warm, and then heavy night sweats. He's waiting for tests to come back to see if his thyroid is out of whack due to radiation. He, like many on the forum was on a cocktail of medications, including some happy pills and the patches. His wife is a nurse and she believes his chills and sweats are at least in part to do with coming off the Fentanyl patches.

Simon is about at the same stage as Pat. His last rad was 9/11/11. He says his worst experience by far, has been the dreadful bout of constipation the first week or two after he finished. I think it's due to the Fentanyl, and even if Pat hasn't experienced it, watch for it and take preventative measures. Have a wonderful holiday !!


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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Thank you so much for your input, it has really helped!! I had him put a 25 patch back on tonight. Even though he doesn't need it for pain, I think he does need it for the draw down since he was on 50's.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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I remember well those days of alternating hot and cold. Mostly the latter. I finished rads around the first of June and spent the next three months wearing sweaters and using blankets even during the day... and I live in Los Angeles.

Congrats to Pat and you both for getting through everything. And hang in there - things will improve!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Thank you so much David, it's good to hear that the chills are normal. We thought it was withdrawing from the pain meds to quick so put a 25 pain patch back on (he had been on 50's) Soon after we put it on the chills went away but his throat started tightening up and last night was back to the heavy mucus and was up several times during the night to gargle, and had a hard time getting oatmeal down this morning. What a see saw, so have you heard of the fentonal causing this? We took the patch back off this morning so we shall see.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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How did the day go? It would seem like those would be withdrawal symptoms. It really is a roller coaster ride, isn't it? You just never know from one day to the next. We went to the docs on Monday to have the sore on Kev's tongue checked. That's really the only place he is having pain now. They did a culture on it but said they think it's normal mucositis and will heal in time. He ate a hamburger patty tonight with ketchup. First shot at a tomato based product. It went great!! He leaves for work in Alaska in 4 weeks and 3 days, so really needs to be able to eat a variety of foods. He works on the Arctic Slope. They work,sleep and eat right there with everything confined to a camp. I'm a bit of a basket case because they are all confined in this huge camp that is all enclosed and no outside air coming in considering it's 30-40 below zero most of the winter. Really praying he will stay healthy!! He usually works 21 days straight, 12 hour days. This hitch he will only go for 14. ONLY 14 after 6 months of hell. UGH!!
Talk to you soon!!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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I agree and am leaning more towards the withdrawal now. Yesterday he was very nostalgic, emotional and depressed. He is still sticking to it and this morning feels more like Pat than he has in weeks. The big milestone was he was actually able to sleep in bed! The last few weeks it has been the recliner because of the mucous. I think the see saw is going to be a good one today and after the drugs are totally out of his system we will keep moving forward. He is plagued with the sore on his tongue too, I hope there is relief for that soon. Wow, I would be freaking out about Alaska, we are in Florida and Pat gets chills when it is in the 50's!!!!! I am sure he will do fine though, 4 weeks is a lot of healing time and I think our men will be back in the game totally by then!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Agreed. We have good guys that's for sure!! Kevin is ready to go back to work. He's soooo bored!
We are weaning off the pain meds too. He has only been on Lortab though. It's a liquid Vicoden basically. He's gone from 9 tsp a day to 6. Next week he will drop down again. He will have to be off of them to go back to work. Praying for the tongue to heal. The culture came back negative for infection, so it just needs time. Funny how a sore on that little thing could cause grown men so much pain!! Well...not funny really.


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Hi Debbie, Pat sounds so much like my brother after he finished radiation, in that every day was different.Would he feel good? Would he feel bad?/Scared and depressed or positive?/Lots of mucous or not so much/chills or sweats/able to keep food down or not?

Yes, it is a huge roller coaster.It shouldn't be too much of a surprise. I think the radiation treatment, though a godsend, must be awful to go through and then for those weeks after it's finished you're never allowed to fell all is OK for too long !! But Pat shuld take comfort in the fact that nothing you have mentioned sounds unexpected or unusual to other members as a whole, although some may not have had exactly the same side-effects as Pat.

Pat is also hugely advantaged by having a great carer. I hope you've been able to enjoy your holidays, and been able to let go of the worry for a while. Best wishes to you both, Linda


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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Linda, it is interesting that you mentioned depression. I wasn't prepared for that one since Pat is always so upbeat. For the past week he has been very depressed and has insomnia x 3 days and getting minimal sleep. He has quit all pain meds at once which I am sure is affecting this, he was not on them for a long period of time and now that he is off, and has minimal pain, going back on is just not an option. Yesterday he did get out to GNC and bought some weight gain protein drink, reinstated his membership at the gym and spent a lot of time with me at work. What do I do for the depression and any ideas on what to do for the insomnia? We are going to the beach tomorrow for lunch and some sun time so I am hoping that helps him.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Depression is quite common post Tx as the "now what" kicks in. Just like everything else, for some it's barely a matter and some require Tx. Have him see a trained specialist with experience in cancer related depression if his condition warrants it.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Hi, Debbie
My husband went off the pain meds cold turkey: this is not easy to do, and may have contributed to the insomnia as well. Using a humidifier helped with the dry mouth that help with sleeping.

It sounds like he is working on helping himself to get better with the protein drinks, gym time and spending time with you. As David mentioned, seeing a trained specialist is the routine to go if that little voice in the back of your head tells you to.

Hope the your day at the beach was pleasant!


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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What a great day, we made the beach, ate ribs and enjoyed the sunshine. It was a very tiring day and after a short walk on the beach it was time to go. Chinese food, daughter and both grand daughters tonight capped a wonderful day. Last night Pat took some OTC sleeping pills and actually got about 8 uninterrupted hours of sleep. We are actually planning a family get together next week for football Sunday if all goes well. Still very very emotional, but a solid rainbow day!!!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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AWESOME!!!!
Kev has been down now. Wondering if part of is his scope tomorrow. He says it doesn't bother him, but I'm nervous so he has to be. Who knows. Could be just a down time. So goes the coaster.
So, so glad Pat got to eat his RIBS!!!!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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How did the scope go? Pat is wondering now how long the sore throat will continue. He does pretty good for the most part, but, towards the evening and sometimes during the day it starts to tighten up and still no night time snacking. His weight was going down to a concerning amount but Sundays trip turned on a switch and he is looking better and healthier. Still plagued by a sore on his tongue but we went to the nurse practitioner yesterday for regular check up's and she said it does not appear to be infected. I know everyone is different but just wanting to know about the throat soreness length of time.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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So ironic Deb. Kevin is going through the exact same thing. Since we are a week ahead I will tell you that his tongue has healed a ton since a week ago Monday when we went to have them look at it. They put him on Diflucan for 10 days and it has done wonders. They didn't think it was infected, but Kev and I think it was a yeast thing or something because it healed so fast after starting the meds.
Kev's throat still hurts though. He is having the same trouble Pat is with food. It's just really hit or miss. He has now lost 42 pounds. That was as of Tuesday, and I know he's lost more. I can see it! Luckily he was about 60 lbs overweight, so he looks great. If only it wasn't muscle he was losing. I know his strength is compromised a bit. It will be ok though.
His scope went well and there was NO sign of cancer. They will do it again in 4 months. CT on the 20th and PET in February.
Our bad news is that my pap came back abnormal and positive for HPV. So next Wednesday I am having a colposcopy and a leep procedure done in the or. It is an outpatient thing. Praying it comes back ok. The next step will be a hysterectomy. I think I'm ok with that as long as it gets it all! Trying not to worry!
One of our fellow cancer buddies died this week too. He was very sick so it's a blessing, but it just made me angry that the cancer won. It's personal now. His name was Kevin too. Sweet man with a sweet wife. Went to the service today and she looked tired, but not as tired as she has looked the last 2 months.
Here's hoping for a good weekend for both of us. Meeting the inlaws at Olive Garden Sunday after church. Hopefully Kev will be able to eat. Fettucine Alfredo usually goes down pretty well. See ya!!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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That is good to know, I don't understand why they didn't put him on antibiotics so will push the issue if it's not better by next week. Our latest mountain to climb is insomnia. As I posted before he took an OTC sleeping pill last week and got a full 8 hours!! All week this week he sleeps a few hours, wakes up a few hours, dozes but is not getting a full nights rest. Last night he tried Excedrin pm as well as two cups of sleepy time tea and it didn't work. I know some of it is psychological because he goes to bed saying "I hope I can sleep tonight". I hope this is one of those this too shall pass moments. I have to go out of town for a week on a business trip and he is coming with so it will be a week of weight room, exercise, pool, whirlpool and eating out for most of our meals. I think this will be very therapeutic for him. Thank you Kathy for all of your help. If anyone has an insomnia cure, I am open to any and all ideas!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Sorry Kathy, I tried to figure our the private message thing but it didn't work..........or user error. Either way, I will be thinking of you on Wednesday and praying for great results! I am so sorry about your friend, no words can be right during a time like this except to say. I am a two time survivor myself, there are a lot of lost lives but fortunately a lot of survivor stories too.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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In the evenings when its warm out, I try to walk in the park near where I live. I will walk about a mile almost every day. This will help me sleep since then I will have a reason to be tired. It usually works for me. Maybe it would help your husband too. Another thing to try would be to stick to a routine. Develop a schedule for going to bed at the same time every night and get up the same time in the mornings. Hope it helps.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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I really sympathize with anyone coping with insomnia and much more so while surviving cancer. My insomnia is the type where I can get to sleep just fine, but I wake up after 3 -4 hours and can't get back to sleep. However, what I do (and I'm not a cancer survivor - I'm a CG) is play solitaire on my iPhone. There's a free one that only has ads in a little strip at the bottom of the screen. That works for me. The concentration on something completely different helps to keep my brain from going over all the stuff like "why does my new kitchen cabinet installation not allow me to open my oven door anymore" to "wonder if that spider I smashed with a phone book" is dried up, stuck to the phone book page and ready for me to throw in the garbage". Seems that the more you think about "why can't I get to sleep" the more you can't sleep. So a mantra like "I'm Sleepy, I'm Sleepy, etc" may work better. I decided to search my iPhone apps and of course "there's an app for that". BTW - I saw a T-Shirt that said "There's a Nap for That". When I was in my 20's, living in Chicago and sharing an apartment with two girlfriends, one of them had terrible insomnia so one night after I had read a book on self-hypnosis, she came to me and asked me to try hypnosis on her. I did and she fell asleep almost instantly. A few minutes later she again came to my room and told me how successful the hypnosis session was. I know- how could it have been successful if she woke up? But she did go on to get a full night's sleep that night. During my son's recovery, his doctor prescribed a sleep aid for him which helped some but of course whatever you try, should be checked out with your doctor. If this post is long enough and perhaps boring enough, maybe it will help someone get to sleep. Feel free to use it anytime you can't sleep. I think I will get back to my Solitaire, now. sleep


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Too funny Anne-Marie!!!!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Thanks Deb. Should have results by Monday after surgery.
Kevin struggles with the insomnia too. His latest combo is a xanex and then 2 Tramadol just before bed. He has slept well on that the last 3 nights. Hasn't even needed to get up to sip water....HUGE!
The weeks are passing and it's getting better. I'm so glad both of us are seeing the positives with each week that passes. You are right, the week away will be so good for you both. Just doing something different helps.
Have a good week!!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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A FULL night of sleep!!!! A wondrous 8 hours (which he never has had for years)!!!!! I woke up several times during the night because I am used to it, sympathy insomnia. Anyway, he is more tired today during the day, BUT, he went to the workout room for 45 minutes today too, at ALMOST 3000 calories and even looks better. It still is rough swallowing sometimes but today was yet another positive on the see saw that has been our lives for so long. HAPPY DAY!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Happy Day indeed.
Kev is good one day and down the next. He still feels like there is a lump in his throat that makes it hard to swallow. Everything checked out with the scope though, so we think it just has to heal itself.
My procedures went great. Just a little pain today when I sit!!! The doc told Kevin that it looked good. He said he didn't think it was precancerous even.Phew! Will get pathology reports next week. But it sounds positive.
Are you back home yet?


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Last day of work before I shoot home, new prosthesis measuring day for me, yeah lol. It's been a long week of work but a great one for Pat. Because we are traveling we have had to eat out every day which is forcing him to eat more fattening foods.Some days were rougher than others but he actually looks like he has gained this week. He also worked out each day and spent some pool time to relax. Someone recommended Melatonin 5mg from GNC for sleep and that worked too! It's been a great week! I am glad all went well for you, I've been thinking of you and so happy! Our last obstacle is for Pat to be able to eat without the Fentora which he is able to do sometimes. So happy days! Now to go home and START my Christmas shopping. All of this has thrown off my otherwise organized life lol. Have a great day everyone!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Kevin's Ct came back CLEAR!!!!!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Kathy - so happy to hear about the clear CT - what a wonderful holiday give to you both!


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Thanks Maria! You know my relief!!! Merry Christmas.


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Congratulations Kevin!!!!!!!!!! What a relief for both of you!!! I hope you had a wonderful holiday!!! Did you get your reports back? Praying they came out great!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Happy New Year Everyone!!! Had a great one full of family and good times. Getting concerned, the last week Pat has had to take pain pills again after eating, is that normal to regress? He had been doing great other than the sore on his tongue. We went to our regular doctor for our end of year follow ups and the doctor said he didn't see anything abnormal. We have a follow up at Moffit on the 10th, just wondering if he should be seen before then or not?


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Happy New Years Debbie!

Being as your appointment is in 10 days, I would say that it depends on the severity of the pain and if there is any other conditions like bleeding or swelling etc. If he's just having an uptick in pain with no other issues and needs a little assistance then I would wait, if it's OMFG kind of pain and he's taking mad doses or has other issues like bleeding or major swelling then get in as soon as you can.

It's a tough call not being able to "see" what's going on so it really comes down to using your gut feeling but always error on the side of caution.

Hope that helps, keep up the good work on caregiving!

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Thanks Eric, I do think that he is experiencing the end of treatments, what if it is still there feelings. However, that being said, the loose skin on his neck under his chin seems to be swollen, almost like it's full of water (the turkey neck). He has had pink tinged mucous and pain with swollowing. I think for his own peace of mind (and mine) I will try to get him in before the 10th just to be sure then get him to the beach just so he can unwind!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
Joined: Sep 2006
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The swelling under the neck is very common. We have had many posts concerning it with some taking a comical approach. There isn't much that can be done for that other than time. Re the pain and the sore on his tongue, I personally don't think that's normal and as you say at least for everyone's peace of mind I would try and get that appt moved up.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Hi Debbie,
My mom had some similar issues, I recall the ENT telling her to watch for trouble swallowing with the swelling. I agree with Eric, if the pain increases I would call right away. If you are still troubled maybe call the office and ask. My mom went through many ups and downs, after a while she/we were able to tell when something needed to be addressed immediately. As for the neck issue, many do experience changes, some are only temporary. I don't see it here in your signature, did Pat have a neck dissection? It is highly recommended that lymph edema therapy be started as soon as surgeon gives an ok, so that he will have mobility, less swallowing issues, and the neck doesn't feel like hard like wood. Best wishes!


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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Hi,
Thanks for the congrats and the Happy New Year. Kevin went through the very same thing 3 weeks ago. Thanksgiving he ate like crazy with very little pain and just a bit of meds, then a week later he was back to eggs and oatmeal WITH pain meds every 4 hours. We were worried too, but they said it was normal. He's eating a wider variety of foods now, but still softish stuff with only a bit of pain meds. He also has the swelling under his chin and on the right side of his neck. I guess that's normal too. He's down 51 lbs now, but is going back to Alaska tomorrow. I am a basket case but not showing it. Will break down after I drop him at the airport. I can't imagine the next 2 weeks without him. Many, many miles away.
I didn't even look at the date of your post. Have you been to the Dr or were they closed until tomorrow?


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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My tests came back ok, but will recheck in 6 months. There is definetly abnormality there, but I guess not enough to do a hysterectomy. I'd like to just get stuff out of there!! Considering getting a second opinion on my mammogram too. Just considering at this point.


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Thank you all for your advice. Kathy, you and Kevin are such a comfort since you are just a few weeks ahead of us. We thought the yo yo was done with, but knowing what to expect and that things are "normal" (if any of this is normal) really helps. We are still being seen and have a call into the Dr. It was a 30 minute hold time so I think getting in today after a holiday will be rough. Pat has an appt next Tuesday but if the nurse feels he should be seen sooner than that we will jump all over it. Second opinions are always a must when you are not convinced you are getting the right results. After surviving BC twice, believe me, you tend to get aggressive. Good luck to you! I am sure he will be fine in Alaska!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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So Pat got into Moffit today and they found a colony of bacteria that was causing his pain and regression. (brought images of the Musinex guys to my mind, camping out in my husbands throat). The good news is they did a really good scope and other than swelling from the healing and a community that was setting up camp down there, there are no signs of cancer, swelling nada nothing! PET on Feb 6th. Wishing for a speedy month to go flying by!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Answers are good...clear scopes are GREAT!!!

Thanks for the update Debbie!



Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Good news!


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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A new little pep in his step, the antibiotics are kicking in already and he discovered chocolate ice cream now tastes like chocolate again. Another celebration today, a friend of our daughters just finished his radiation today!! He had 6 Chemo's and 35 rads. With all of the information you give and we have experienced we have been and can continue to pass the torch of knowledge and healing to him. Bless you all, I don't know what we would have done without this site. There is not an instructional manual they hand you with all of this stuff and we will be forever grateful. Setting up now for Occupational Therapy for the Lymphodemia then continue a normal life whatever that is. Thanks to all of you!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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That's good news. Not the bacteria...but the rest!!
Kevin's scope found the same thing Then the ct too. His follow up PET isn't going to be until at least March though. They said if you do it too soon the inflammation will light up and scare everyone to death. I'm surprised they are doing Pat's sooner than Kev's. Back to that different doc thing!
Kevin has now worked one complete 12 hour day. Only he found out they are actually 13 hours day because they start at 5am now!! He said he's tired, but not too bad. Eating lots of yogurt!
Glad you got some answers. Hope he feels much better soon.


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Before you know it he will be back home and ready to relax with his bride :-) Hang in there. The colony is still breaking up so back to coughing and spitting up unidentifiable gunk, but that's a good thing. Get it all out! We have a routing next Tuesday at Moffit for bloodwork and the Oncologist so we will ask him about the PET and get a second opinion too. We certainly do not need any false alarms. He is still going through the what if's. Is there a standard time for follow up PET scans? They have not talked about or scheduled a CT.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Hi, Debbie
as I understand it, 3 months is the typical minumum wait for a planned PET, but I have seen references to 2-6 months in some of the literature I have read. My husband's doctors wouldn't specify the date until about a month before he had the scan.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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They just told Kevin they wanted to wait until March. Last radiation and Erbitux was 10/26&27. Funny though, Kev already had the CT. So strange how everyone is different. Not sure if it's comforting or not, huh?
Kevin said the biggest issue he's having is the dry air. The temp is -45 so one breath in and your mouth is dry. With his being dry anyway it makes it hard, then he swallows and he says it feels like sand paper. He's had to take quite a bit of pain meds today. He's not terribly tired though. Doing a lot of desk work.
Good luck this week Deb. And by the way...I find myself struggling with the what ifs too. :o(




Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Move to Florida! lol It's bad enough down here when the temps dip into the dry 50's, I can't imagine minus anything!


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Kathy -

My husband was complaining of the dry air, too - he was out fixing the mailbox yesterday - but it was a balmy 30 degrees F!

I don't know if they have any humidifiers at the site - if there are, he should beg borrow or steal one for at night/by his desk. If there isn't a humifier, see if there is a hot plate, coffee makes or electric tea pot. Barring that, a pan of water by the hot air source will help a bit. If he can give himself a little relief at night/doing desk work it will help.

We have a Hamilton Beach Invisible Mist humidifier that makes white noise which helps me sleep, and mist with helps my husband. Maybe get two - one for at home, one to send up with him next time. Best wishes to you both - you are both tough cookies!


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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I hear you there David, I cannot imagine going through this anywhere but Florida. Moffit is close, but better than that the Convertible on January 8th is very therapeutic :-) Kathy, those few days when it is not humid here we use a humidifier and it works wonders. We are still waiting for the fungus colony to break up and move out, but it is getting better for Pat. He is still getting some pain when he eats, mostly from the stubborn sore still on his tongue, but not as bad as a few days ago. Pat says to tell you he's thinking of Kevin and he is one tough guy for doing what he is doing.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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David,
We actually moved to Alaska from FLORIDA!!!! Now we live in NY, but he WORKS in Alaska.


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Thank you guys so much. I will pass the message along. I'm still kind of shocked he's there after everything we went through. I NEVER dreamed he'd be back already.
Maria, the humidifier is a GREAT idea. We have one at home. I will send him an email tonight and suggest it. I don't know what they have there as I've never been. I'd love to go up and see the camp, but it's not allowed.
Thanks for the input guys!! Talk to ya' soon.
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Kevin found a humidifier!! Hopefully it will help!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Excellent, Kathy. If nothing else, I bet it will help him to sleep more soundly. Please send him my best wishes. Maybe he would find a little story about our experiences amusing. When my husband was using Vicodin during toward the end of his TX and for about a half a week thereafter, I drove him to work as he was pretty fuzzy on the drugs. He hated it. I can't, it seems, drive properly (not that I'm the one with accidents on my record, but what of that). So with the driving as an incentive, he dropped the vicodin entirely. Drove himself to work and back, then had withdrawal symtoms all night. He was a very sad puppy. While I wasn't terribly sympathetic at the time, it did his spirts a lot of good to drive himself.

Last edited by Maria; 01-09-2012 11:31 AM.

CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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That's funny Maria. Turns out I can't drive properly either!! But, I have NEVER had a ticket or an accident that was my fault. I have been slammed into by a woman doing who knows what and didn't see the red light, but nothing that I caused!! I'll send Kevin your best wishes.
I was wondering...will your husband have another PET soon?


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Is it a chemorad thing or a boy thing re the driving? As sick as he was, my Alex nearly got himself dropped off on the side of the road quite a few times whilst I was driving him to and from appointments. smile The only time we had no argument about my driving (which I used to do for a living by the way) was when he was too sick to talk !


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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Your husband is suffering from a severe handicap - BEING MALE. This "I am the only one who can drive properly" defect doesn't have a thing to do with cancer!!

Donna smile

Last edited by Pandora99; 01-10-2012 12:29 AM.

Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Wow! does this ring a bell with me! It's true, the "I'm the only one who can drive properly" seems to be a MALE thing. And also associated with recovery from OC. I used to drive for a living, too - as a school bus driver in Chicago. Once, on the way home from Rad Tx, all of a sudden my son shouted, Stop the Car!! Stop the Car!! We were in a residential area in a very narrow section of road - and not realizing what was wrong, I pulled over to the side. Then I heard, "No, no!! not here, up ahead by the bushes!! - where Paul opened the passenger side door, leaned over and the nausea took over, fertilizing the bushes. I happened more than once, and for the life of me I don't know why the thought never occurred to me to have a throw up bucket in the car!! (a paper towel in the bucket helps in the clean up). I had everything else - Lots of water, lots of towels, tissues, etc. but no Throw-Up bucket! Cancer takes away the control of so many things in a person's life, and for the Left brain male, being in control of something is important, so directing someone's driving becomes a small thing for the caregiver to allow him to have. I would try to find other ways Paul could be in control, like giving him choices: "Do you want chicken broth or beef broth?"; "Want a big spoon or little spoon?" "Do you want to take the expressway or the back roads to get to Rad Tx?", etc.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Anne-Marie wrote -
"Cancer takes away the control of so many things in a person's life, and for the Left brain male, being in control of something is important, so directing someone's driving becomes a small thing for the caregiver to allow him to have. "

Yes - I think that's a big part of it. A friend's husband had diabetes-related kidney failure. It was a stellar day when his and his new kidney could drive again - without her!

I'm not sure its entirely male, though - with my recent adventures in auto-immune world, my pleas for him to drive slower in the snow increase when my inflamation/anxiety level is up! My reumatologist decided yesterday that my current diagnosis is RA, not Lupus AND RA, so that's a good thing. We will see what my inflamatory markers look like when the blood work comes back.

Kathy -
not sure when/if another PET will be scheduled. He has an RO appointment next week, and an ENT visit in on Valentine's day. Will update when there is something to update.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Great advice Anne-Marie and very well said! amazing insight into how we overbearing males work, I know its true for me.

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Oh Eric, so glad you jumped on this one. Was feeling bad though because we only had one, well maybe two "incidents" . The driving thing really is an incentive to heal quickly although I think Pat actually enjoyed it.......... just don't tell him I said that :-). O happy days, after 3 hours at Moffit the Oncologist has released us from his care. Feb 6th is the PET, maybe I can drive that day!!!!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Pat from all that I'm reading you are doing a fantastic job so just keep your chin up and keep trying and lean on the fantastic caregivers on this site to help you through.

I look back now that I'm not in a drug induced stupor and marvel at how my wife held me up by my boot straps while having really no support herself. To this day she's never been on these forums (I keep trying!). I look back at the stupid sh!t I said and did, most of which I don't even remember, and think why in God's name did she even stay by me? I'm thankful for her everyday as I'm sure your husband will be for you when he's allowed to reflect back.

Really ladies, I'm in awe of you for how you do it and can only pray I'd have the fortitude. My hats off to you all.

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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ya I wish that Ron could get off the pain meds too, some days he's fine some days he's an "a" hole...
He broke down yesterday for no apparent reason at BW3's, I tried to make him laugh, had chicken wing sticking out of my mouth, burping ya real lady like but hell I tried, he stopped finally, I asked him what happened? He said sometimes he can't control it and I said ya drugs and beer will do that to you. He had a couple and of course being a depressant duh. I think he is worrying more now that his biopsy surgery is Friday. I feel he will forever be on the meds, that darn dead bone issue is giving him pain hopefully it will start to heal up.


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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SUEZ - I really feel for you both. All that stuff messes with brain chemistry, and not feeling good enough to be active makes it even harder to be active. Walking the dog helped us both - don't know if that (just a walk if no dog) is a possibility. Of course, we get dumped on weatherwise in the next couple of days.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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I actually had the thought of maybe it's something he can control after several months of tx. He really didn't care during the chemo, it was back and forth to rad twice a day that it got bad. We spent a lot of time in the car, as I'm sure we all did.
Kev's employer is actually having some Ensure flown in for him tomorrow. These people really rock!!
And...Kev said it was only -10 today so it felt really warm!!!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Let me join my brother Eric in gratitude for the amazing patience of wife/caregivers in dealing with our driving commentaries. Some of my all time classics
[quote]Speed up- you can make that light! Cut in now, that car will brake! Get in the other lane, this one is too slow!
Don't slow down, speed up or we will never be able to merge!
That idiot has a brand new car, just cut over in front of him, our car is old so what's a scratch? Damn it, just drive on the shoulder, our exit's next and the traffic isn't moving!
Turn left now, the oncoming traffic isn't that fast!
Are we waiting for an invitation to merge? Just pull into the intersection, it's only a yellow light. [/quote]
I hated not being able to drive myself but ironically my wife was better temperamentally suited to deal with the mind-bending traffic jams of Washington DC and Georgetown during evening rush hour coming back from radiation then I would have been.
Caregivers ROCK
Charm

Last edited by Charm2017; 01-12-2012 07:29 AM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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All of this driving chatter has brought tears of laughter to my eyes and my heart. No matter what, I will treasure the days and miles we traveled together good and bad because of the following: Slow traffic gave us time together that busy schedules and life simply never gave us before, every red light meant we had a few more minutes before the table bolt down began, the drive home and relief after gave us a chance to lighten up and continue our count down calendar. Now that life is "normal" again and I am back to work, treatments are over, I really do miss our drive time. Good or bad it was OUR time without anyone poking, prodding, bolting down, zapping. Just blaring horns, red lights, selective finger usage and time to chat and support each other. Good and bad, there was never a single day that Pat did not and has not told me how much he appreciates what I have done and do for him. Now, Kathy, I am so glad that Kevin has a supportive team that has gone above and beyond for him, did the humidifier help? Question for all of you, for the first time tonight I took a flashlight and looked into Pats mouth, the Diflucan (thank you Kathy it was a fungus) has healed his throat but he was still left with the sore on his tongue so the doctor prescribed Kenalog , a dental gel. Soooooooooooo tonight I helped him put it on the sore since it is so far back. HOLY BATMAN!!! He has a hole in his tongue! Has anyone gone through that, is that the treatment that is most effective or is there another avenue that we should be looking into. Feeling cold hearted in thinking when he said his tongue was sore, I was thinking Cancer Sore type sore. Advice?


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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Hi, Debbie
my husband never let me look in his mouth (fearing tears and hysteria). I know his tongue was sore for a long time - especially the areas of back-scatter from his dental work. The viscous lidocaine was helpful for the pain but don't know if helped with healing or not.

One of the nicest times that my husband and had together was returning home from a rad session / RO appointment. It was snowing, he was driving, and we were stuck in traffic. We had a nice talk with his sister via cell, and then just enjoyed chatting on the long drive home. Just like you say, we were together, partners in the journey, just as we have been in our 36 years of marriage.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Joined: May 2010
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[quote] HOLY BATMAN!!! He has a hole in his tongue! Has anyone gone through that, is that the treatment that is most effective or is there another avenue that we should be looking into. [/quote]

Is is possible the hole is where the cancer used to be and you just have to wait for it to heal and just manage the pain and keep infection out? Did the doctor look and see the hole for him or herself?

Alex has a "shelf" at the back of his throat where his cancer was. It has healed over but the physical deformity (sorry don't know how else to describe it) will always be there ready to choke him when food gets stuck there.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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Patdeb Offline OP
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I believe the hole is where the cancer used to be or close to it. I hate seeing him in so much pain when everything else has healed. The throat has healed and was a fungal infection, but now he is losing weight again because it's painful to eat again. Wondering if they can't just pop a stitch or two into it to close it up? The doctor (oncologist) looked at the hole and prescribed the paste, the radiologist looked at it and prescribed pain pills, I am thinking the original ENT plastic surgeon might have an answer? There has got to be a way to plug an open hole to keep food out that might cause recurring infection? Getting frustrated, but still thankful for the end of the worst and just dealing with the fallout.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
Joined: Oct 2011
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Thanks for the high fives Charm. Kevin, like Pat, has thanked me many times for taking care of him and keeping our home crew going too. It is not something we want to repeat, but it was definitely a team building experience for us.
I think the humidifier did help a bit. He worked outside 3 days ago in -50 conditions so his throat really hurt the next day from breathing in the cold. The next day he wore a face mask and it was much better. He said he's feeling really good though. I cannot wait to see him next Saturday. I can't imagine how hard the next hitch (3 weeks) is gonna be on us. We have done this for 4 years and were fine being apart, but after the last 6 months...phew!
Deb, I looked in Kevin's mouth with a flashlight the whole time. When, at the end, his tongue was really sore, it was just a huge raw spot, not a hole. Hope that is ok!! Does his doc know? YUCK!
I think Kevin has a bit of a shelf too. The way he describes things getting caught sounds like a shelf. Good way to put it Karen!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Posts: 53
Patdeb Offline OP
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Next Saturday! Time flys! The sore is definitely a hole. Thanks for the tip on the Diflucan for the throat fungus, if we can just get the tongue healed he will be a happy camper. We have moved backwards in the past few days and it is starting to concern me. Making an appt Monday with the ENT to look at. He was eating better a week ago but now is in pain again.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
Joined: Nov 2011
Posts: 53
Patdeb Offline OP
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Hoping for some tips, advice on the hole in the tongue???? Still trying to get through to the ENT, but now he is going downhill again and not eating as well, losing weight. If we can get the tongue, we are in pretty good shape. No call back from the doctor today, hard to push during a busy day work and traveling the next two days for business. Frustration again just when the dust was settling. Hard to see your loved one moan every time he eats. Sigh............


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
Joined: Oct 2011
Posts: 805
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So sorry Deb. How are things? Are you back home? Heard from the Dr. yet? I would be freaking out a little I think. Please update when you have a minute.
Kevin will be home in 2 days!!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: Jul 2011
Posts: 945
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Hi, Debbie - thoughts are with you - let us know how it's going.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Joined: Nov 2011
Posts: 33
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Kathy/Kevin;

Sounds like Kevin went through the same treatment that I went through 6 years ago. Instead of the tongue, my ulcer was in the cheek. To be honest, if I eat something too spicy that is still where I feel it. This tongue may never go back to normal but I think that it will heal over time. Kevin is still in the very early stages of recovery from radiation to the head. Recovery, for me, was measured in years rather than weeks or months. My life saver for the cheek pain, and possibly for Kevin's tongue pain, was swishing with miracle mouthwash and lidocaine gel. The lidocaine is a topical anesthetic that really doesn't have an. I would put a dab on the sore before I tried eating and it really helped me.

Good luck and remember, "Baby Steps"


2006 SCC T0 N1 M0; 2006 EBRT x 33, chemo x 3; 2010 Extraction 2 molars; 2010 HBOx30; 2011 Dx osteosarcoma of mandible; 12/20/11 mandibulectomy with temp. titanium plate; 1/31/2012 chemo x 4; 9/19/2012 Reconstruction of mandible with graft from hip and bone morphogenic protein
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Thanks Richard, but it's actually Pat that has the sore on his tongue. The post began with he and Deb.
Kevin is doing pretty well. He's back to work in sub zero weather in Alaska. He has been there for 2 weeks, but is now beginning the journey back here to NY. He won't go back until February 15th.
Kev didn't go through nearly as much as you I don't think. His tx sounds close though, but there were no teeth involved or surgeries. Just the chemo and radiation.
Thanks for your post. I know Deb will pass your info on to Pat. Yay for 6 years ago. Praying we will be there one day too.
Blessings,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: Nov 2011
Posts: 53
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Thanks for everyones thoughts and advice. The "paste" they gave Pat is giving him some relief and he has days it does not bother him as much as others. It's really a hard spot to reach but I do my best to plug the hole. The doctor never called back, so bye bye to that one. I am thinking the best course will be to have him go to his dentist so Monday he will be calling him. This guy is really good with a wife that works at Moffit and he is a "cancer dentist" if there is such a thing. At best he will at least have the tools to see back that far and explore. His weight is still down and in general his health is good. He is starting occupational therapy on Monday for Lymphodemia. His PT did say is was just starting so two weeks of learning how to do the gentle massage to open up the nodes so everything drains the proper way. As you said, baby steps. We are not getting discouraged, just staying ahead of the game. We have lidocaine liquid, I wonder if that would work on the sore for eating, hmmmmmmmmmm. Thanks for the advice and Kathy I am so glad Kevin is on his way home!!!!!!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
Joined: Oct 2011
Posts: 805
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Hi Deb,
Yup, he's home. I LOVE it!
Can you explain the lymphodemia? Kevin has quite a bit of swelling on the outside of his throat. I wonder if that could be the same thing?
I can't believe they didn't call you back. I'd be gone too. Hope you get some answers this week.


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: Nov 2011
Posts: 53
Patdeb Offline OP
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So glad he made it home safe and the cold weather is behind him for now. I can't imagine! The swelling started a few weeks ago and he had a lot of "turkey neck" that was hanging and some days just seemed swollen. We did some research and found this is common with radiation to the head and neck. The radiation seals off or gets clogged the lymph nodes and the fluids don't know where to drain to. He starts occupational therapy today and for two weeks after. They use a series of light massage and compression with an ace type bandage to open things up and redirect the built up fluid so it drains. I will keep you posted but look for swelling in the neck, throat, back of neck and chest wall. The OT said if caught early that it's common and not a problem.


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
Joined: Oct 2011
Posts: 805
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Kevin is definitely dealing with this too. I told him what you guys are doing, but he doesn't seem interested in seeing anyone. Can you let me know how it works for Pat? Some days it is way worse than others.
Thanks


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: Nov 2011
Posts: 53
Patdeb Offline OP
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Actually this is the best part of any treatment he has had. He only has to go for one week, possibly two. Basically he gets a facial every day for an hour. The OT is opening up and redirecting the fluid that had been pooling in the neck area. She is teaching him a series of light massages, he also sleeps with an ace bandage wrap around his neck and head. She said that anyone that goes through this should sleep elevated to prevent the fluids from pooling. That has been a tough one, but we found an inflatable wedge that goes under the mattress called Mattress Genie so I will let you know on all of it as we are done. Worst case scenario is he gets some gentle massages, and all of you on here that have been through this deserve it!!! The good news is that yesterday was his colonoscopy and everything looked fine, a couple of biopsies in the esophagus but the doctor really thinks that is nothing and said its common with someone that has had radiation to the head and neck. Onwards to the PET on February 6th,, then we will breathe! Have a great day!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
Joined: Oct 2011
Posts: 805
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Hi Deb,
How's it going? Thinking about you guys. Hope all is well!
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: Nov 2011
Posts: 53
Patdeb Offline OP
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PET scan in 2 hours, fingers and toes crossed! Hoping all is well with you guys!


Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
Joined: Oct 2011
Posts: 805
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Any news? I can't imagine your nerves right now. Kevin isn't having one until mid March. Let us know....


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: Oct 2011
Posts: 805
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Quite concerned. I wish I had a way to contact you other than this and email. Waiting to hear and praying.


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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