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#148721 - 04/24/12 10:56 PM New here and glad I have found this site!
joseel Offline
"OCF Canuck"
Member

Registered: 04/23/12
Posts: 13
Loc: Ontario, Canada
My name is Josee, I am a caregiver to my spouse Mike. He is 41 and was diagnosed with stage 2 SSC base of the tongue HPV 16. He was treated for HPV 20 years ago. He was diagnosed Mar 8th thank god it went fast once we saw the right people. I am a dental hygienist and I found swollen lymph nodes at the beginning of December. I sent him to the family doc, who did not agree that the lymph nodes were swollen. So Mike had to try every ear drop on the market b4 we could get the referral to ENT (of course ENT agreed with me frown ). We are fortunate that it is only stage 2 in nodes (where biopsy was done) and no distant mets. He is in the middle of 35 rad (#19 today) and has had 2/3 doses of cisplatin. Has anyone else has hearing loss? He had ringing after first dose which we told the doctor about. Since second dose, the hearing in his left ear (beside the nodes) has started to lose hearing. We have reported this to the doctor. Is this temporary or permanent?

He has lost 32 pounds and cannot take very much by mouth. Has anyone else had major problems with nausea caused by the dead tumor cells? He is trying everything, our last chance is Maxaren every 8 hours contiunously to see if it can get the nausea under control. If not then its a jegunal feeding tube or TPN (IV nutrition ugh!) Its so hard, feeling powerless and watching him struggle every day. If anyone has been through this and has feedback I would greatly appreciate it.

Praying the Maxaren works ..

Josee
_________________________
CG to Mike, diagnosed SSC base of tongue March 6/12, T2N2, Stage 4, 35 rads, 3 cisplatin, hospitalized end of treatment TPN nutrition lost 50lbs. lymph nodes in neck necrotic tissue Jan /13, radical neck dissection March 20 positive SCC could not remove all

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#148722 - 04/24/12 11:37 PM Re: New here and glad I have found this site! [Re: joseel]
ChristineB Online   content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9215
Loc: PA
Welcome to OCF, Josee! Im very glad you have found this forum to get some good advice from.

The cisplatin is known to cause hearing problems. Im glad you have notified the doctor about this. Do NOT allow them to give him a third dose! The hearing loss is permanent!

Losing 32 pounds is alot. We all have struggled getting thru chemo/rads, some more than others. Nutrition is the one thing that is controllable. The better he does with nutrition the easier it will be for him to get thru this. He must have 2500 calories and 48 oz of water every single day, at the minimum, more is going to help him even better. This is something I cant stress enough! It is not an option but a necessity! I know its not easy but if he has lost that much weight then whats going on is NOT working and needs to be corrected right away. I ended up being hospitalized for malnutrition and dehydration and I felt like I was dying so I am speaking from experience. Try ordering some Carnation Very High Calorie from Amazon. Use the link in the green box on the main forum pages so it helps OCF to keep helping others. Carnation VHC has 560 calories and will make it so much easier to meet his daily goals by drinking 5 per day, even better would be 6 or 7 to help build him back up alittle.

Im not sure what you mean by nausea caused by dead tumor cells. Cisplatin causes nausea. There are many meds out there that can help control this. I still take Zofran occasionally for nausea issues. If worse comes to worse there are even anti-nausea meds that come in suppository form. A feeding tube is not a bad idea. Ive seen many patients think they can do it without one only to end up getting en emergency one put in. There is also a nasal tube for a more temporary tool. Nobody wants a feeding tube but he MUST get proper nutrition or things will get much worse than they are now. Unfortunately as time goes on things get more difficult but with proper nutrition and hydration he will get thru it so much easier. If he cant drink enough water daily, tell the doc and nurses and ask for hydration. He will feel like a new man when he gets hydrated.

Please feel free to ask questions. We will help get you both thru this. Best wishes!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148723 - 04/24/12 11:38 PM Re: New here and glad I have found this site! [Re: joseel]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 493
Loc: NW Ohio
Welcome to OCF, Josee. We are glad you found us, but sorry you had to. I had similar treatments - 7 weeks of radiation and 3 cisplatin. I had a pretty rough time with my treatments and used a PEG tube, which I hated, but was glad that I had it. I was also nauseated a lot, so his reaction is not uncommon. My cancer was on the left side of my tongue, but I was negative for HPV. I also had a weird thing happen with my hearing, but in my case, it was temporary. Make sure that he stays hydrated. That is really important. I had to be admitted to the hospital after I had completed my treatments because I wasn't getting enough nourishment. That was really discouraging. But I am going on three years out, and I am still here! I am sure that you will here from others. Good luck!
_________________________
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.

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#148726 - 04/25/12 12:40 AM Re: New here and glad I have found this site! [Re: zengalib]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Hi Josee,
My husband finished tx at the end of October. When you read our signature you will see that he had Cistplatin also. He also had 2 other chemos at the same time, so the nausea was huge. This was all 6 weeks before radiation, then he had Erbitux WITH the radiation. When he struggled with the nausea in the beginning, we had a PEG tube put in. He hated it though, so didn't use it much. But if he had to it was there. The nausea can continue even with the PEG, so it might just be better to keep trying anti-nausea meds if it's simply for nausea. If he is hurting and cannot take nutrition by mouth, then he should do the tube.Kevin also has lost some hearing. I find I'm having to repeat myself often. We were confident with the tx though, so would rather have him not being able to hear as well if the cancer is gone. He can always get a hearing aide later.
We all know exactly what you are going through. It sucks that it took a bit to get a diagnosis. It was that way for us too. We went to the doc in Early May and were finally diagnosed the middle of July. I was livid at that point because nobody would listen to me, including Kevin, who was in complete denial.
One thing we did to help balance his stomach and bowels was to take Align. You HAVE to check with your doc first though. They didn't mind us doing it, but every doc is different.
We are here for you. Glad you found us. As the caregiver I found amazing support here. It got kind of scary and it was so nice to hear from many others that what we were going through was normal.
Check your private messages under "My stuff". I sent you a message.
Blessings,
Kathy


Edited by KP5 (04/25/12 12:48 AM)
_________________________
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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#148754 - 04/25/12 08:26 PM Re: New here and glad I have found this site! [Re: KP5]
davidcpa Offline
Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
Josee,

See my Signature Line.

Some comments...

1. Not sure what you mean by "he was treated for HPV 20 years ago"? No one associated HPV with OC that far back and I'm not sure if there existed any testing for HPV outside of a PAP smear.

2. I'm shocked after telling his docs about the ringing that they gave him his 2nd dose of Cis. They can and should have (IMO) switched to Carboplatin. Heck they should have administered his Cis in 6 smaller doses than the 3 big bag method.

3. Have his slides been tested for HPV?

4. Weight loss is very very common with his Tx even if he is able to consume 3000 cals a day. Water consumption is also very important. Most recommend at least 48 ozs a day. Try to avoid the feeding tube but if you must then consider the nasal tube. Even with the tube we recommend he continue to use his swallowing muscles every day. In the US we can get a product called Carnation Instant Breakfast VHC which has a whopping 560 cals in a small 8 oz can. It really makes a difference when you can swallow less and get the same calories.

5. Nausea is also common with both the Cis and rad. I didn't experience any naseau until after my 2nd big bag of Cis. Nothing seemed to help me in that dept.

6. Keep in mind that everyone can react differently to this Tx but most of us continue to get progressively worse from this point on with the 2 to 3 weeks POST Tx being our worse time.

Glad you came to this site. You will find it invaluable and please post about anything 24/7.
_________________________
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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#148758 - 04/25/12 11:11 PM Re: New here and glad I have found this site! [Re: davidcpa]
joseel Offline
"OCF Canuck"
Member

Registered: 04/23/12
Posts: 13
Loc: Ontario, Canada
@ David: HPV also causes genital warts, he was treated for that 20 years ago, yes they have check his slides for HPV, it was on the biopsy report. You are right as a dental professional, we only started hearing about the link of oral cancer and HPV about 2 years ago.
They have him trying Zofran oral dissolving tabs so its absorbed in the mouth, we'll see how that works.
NG tube is out, he would just vomit it out, so is the PEG because the food is still deposited in his stomach and would be vomited out. J tube is the only option if we need to go that route.
@Christine - the dead cells and thick mucous build up was really bothering him, he gags on it and vomits
better hydration and very frequent gargling and rinsing with club soda are helping, he kept down what he ate last night, he got sick once this morning but it was only mucous and bile.

He doesn't have alot of throat pain yet... I'll let you all know how we make out over the next couple of days
Thank you for your comments and info!

Josee
_________________________
CG to Mike, diagnosed SSC base of tongue March 6/12, T2N2, Stage 4, 35 rads, 3 cisplatin, hospitalized end of treatment TPN nutrition lost 50lbs. lymph nodes in neck necrotic tissue Jan /13, radical neck dissection March 20 positive SCC could not remove all

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#148762 - 04/26/12 01:08 AM Re: New here and glad I have found this site! [Re: joseel]
ChristineB Online   content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9215
Loc: PA
When he sees the nurses you can ask for him to get suctioned out. This will help get rid of the extra mucous. Try also rinsing several times per day with 16oz warm water, 2 tsp baking soda and 2 tsp salt. If the salt burns cut it down to 1 tsp or is necessary omit it completely. Musinex will help control the mucous too. Ive heard good things about club soda, never used it while I was doing rads.

The Zofran ready tabs is what I use too. I found it very helpful in controlling the nausea. Stay ahead of it and have him take the meds on a regular basis even if he thinks he is ok. Once he gets behind its next to impossible to catch up with the nutrition and fluids.

I have a J/G tube which is a combo of the PEG tube and also the J tube. This works for me better than the PEG tube did.

Push the nutrition and hydration as much as possible. I know its hard, it will be rough for the next few weeks.

Good luck!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148763 - 04/26/12 01:56 AM Re: New here and glad I have found this site! [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hey joseel... Where is he being treated?
_________________________
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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#148765 - 04/26/12 02:51 AM Re: New here and glad I have found this site! [Re: Cheryld]
joseel Offline
"OCF Canuck"
Member

Registered: 04/23/12
Posts: 13
Loc: Ontario, Canada
@ Cheryl: Ottawa Regional Cancer Center
@ Christine: The dietician recommended a home suction unit, they are working on getting that ordered. And yes the zofran seems to help... smile


_________________________
CG to Mike, diagnosed SSC base of tongue March 6/12, T2N2, Stage 4, 35 rads, 3 cisplatin, hospitalized end of treatment TPN nutrition lost 50lbs. lymph nodes in neck necrotic tissue Jan /13, radical neck dissection March 20 positive SCC could not remove all

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#148768 - 04/26/12 12:46 PM Re: New here and glad I have found this site! [Re: joseel]
davidcpa Offline
Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8311
Loc: Gulfport, Florida
joseel,

So far they have not found a connection with HPV found in one part of the body being able to travel to another site but much is still not known about HPV.

Six years ago Dr Maura Gillison, then at John Hopkins, was actively involved in researching the connection between HPV and OC. I contacted her then and she tested my slides which proved to be HPV16+. Ever since then I have made it my personal mission to educate as many people, especially men, re this connection.

Sorry to hear about his nausea problems. That was one of my worse problems which, like a snowball rolling down that hill, it created other problems. I finally gave up on all meds and found that my nausea lessened. I lost 30% of my total body mass.

We are here for the both of you.
_________________________
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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#148774 - 04/26/12 03:06 PM Re: New here and glad I have found this site! [Re: davidcpa]
joseel Offline
"OCF Canuck"
Member

Registered: 04/23/12
Posts: 13
Loc: Ontario, Canada
thx David smile
_________________________
CG to Mike, diagnosed SSC base of tongue March 6/12, T2N2, Stage 4, 35 rads, 3 cisplatin, hospitalized end of treatment TPN nutrition lost 50lbs. lymph nodes in neck necrotic tissue Jan /13, radical neck dissection March 20 positive SCC could not remove all

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#148775 - 04/26/12 04:25 PM Re: New here and glad I have found this site! [Re: davidcpa]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hey! Cool... I'm in TO - PMH - smile so glad things are getting a bit better!
_________________________
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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#148946 - 05/01/12 09:01 PM Re: New here and glad I have found this site! [Re: davidcpa]
joseel Offline
"OCF Canuck"
Member

Registered: 04/23/12
Posts: 13
Loc: Ontario, Canada
Well, zofiran ODT are working well, so well they attempted an NG tube. He's tolerating it for flushing and meds, the pump is being delivered tonight and we will start feeding then... I'm encouraged.. he's not so much, more tubes sticking out of him. But at least he can get nutrition. Thanks for all the help. I will keep in touch with how things go from here.

Josee
_________________________
CG to Mike, diagnosed SSC base of tongue March 6/12, T2N2, Stage 4, 35 rads, 3 cisplatin, hospitalized end of treatment TPN nutrition lost 50lbs. lymph nodes in neck necrotic tissue Jan /13, radical neck dissection March 20 positive SCC could not remove all

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#148948 - 05/01/12 09:40 PM Re: New here and glad I have found this site! [Re: joseel]
ChristineB Online   content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9215
Loc: PA
Once the nutrition is where it should be he will feel so much better! Glad it is working out. Dont forget you can always get hydrated at the hospital if you feel he is not getting enough water. Daily minimum is 48 oz of water and 2500 calories, more is even better. This will make a huge difference in how he does with treatments.

Best wishes!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#149011 - 05/03/12 04:36 AM Re: New here and glad I have found this site! [Re: davidcpa]
Kerri Offline
"Above & Beyond" Member (500+ posts)

Registered: 08/08/11
Posts: 592
Loc: MA
Hi, Josee.

I had a home suction unit that helped tremendously. There are lots of people who have "been there, done that" and they have lots first-hand experience to share. You husband is fortunate to have a person such as yourself taking care of him. Please remember to take care of yourself, too.

Hugs to you,
Kerri
_________________________
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
42 years old now...I wasn't sure I would make it! Hoping for 40 more!

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#149042 - 05/04/12 01:11 AM Re: New here and glad I have found this site! [Re: davidcpa]
KenEggman Offline
Contributing Member (25+ posts)

Registered: 04/14/12
Posts: 32
Loc: VA, USA
Hi Josee, I am pretty much a newbie also. I was diagnosed with SCC in the tonsil end of Mar 12. Had the tonsils removed. SCC metastasized to the L lymph nodes (PET had a light show). MY cancer center the Walter Reed National Military Medical Center will provide my treatment to beat cancer. I had 4 morals removed yesterday. I get my PEG next Tuesday. I get my mask fitted and do a rad simulation next Monday. I get a port installed on 10 May. I start rad/chemo 21 May.

I agreed with my team of providers I will need a PEG. For me hopefully it will be a back-up. I had some difficulties post-op and bled, a lot. Two times went back to ER. Last time was a charm. Dr. cauterized the bleeder but those two weeks were a noted challenge to eat or drink. Eating and drinking is required to live, so for me deciding to install a PEG was easy. I will muscle down whatever I can thru the mouth, but if I cannot, I got my backup already to go.

Most of my Dr's said the issues come up when a patient thinks they will be able to eat/drink but don't or cannot (but don't have the PEG already). I'm just preparing for the worst.

As I mentioned, I'm new to this, but a PEG might make thinks more tolerable.

Sincerely,

Ken
_________________________
48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr
1 mo sore throat w/neck lump 3/12
SCC tonsil, lym nodes
4/12/12 rad tonslctmy, mets in lymph nodes
5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer
BSA Scout Ldr w/strng desire to live & beat cancer

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