Previous Thread
Next Thread
Print Thread
Page 2 of 15 1 2 3 4 14 15
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
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
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
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.
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
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
Joined: Nov 2011
Posts: 53
Patdeb Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Nov 2011
Posts: 53
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!!!!
Joined: Feb 2008
Posts: 19
Member
Offline
Member

Joined: Feb 2008
Posts: 19
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....
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
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
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
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.
Joined: Jan 2009
Posts: 476
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jan 2009
Posts: 476
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
Joined: Nov 2011
Posts: 53
Patdeb Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Nov 2011
Posts: 53
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!!!!
Joined: Jul 2010
Posts: 531
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2010
Posts: 531
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
Page 2 of 15 1 2 3 4 14 15

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5