Newbie Here

DShaw

My husband was diagnosed with throat cancer the end of October. He wi start his 4th week of radiation and his 2nd chemo tomorrow. He has a lot of mouth pain but hasn’t started pain meds yet. We will ask for those tomorow. How much worse can I expect his pain to get over the next four weeks?  And should I expect he’all need a feeding tube?  He does not want one. Any help you can offer is greatly appreciated. Thanks. 

christine2080

4th week

Welcome to the site! This site was (& is) an invaluable resource to me as my husband went through treatment & recovery (SSC BOT HPV+ stage 4 ). He went through 35 radiations beginning October 4 & 7 Cetuximab chemos. He completed treatment November 21. From our experience week 4 seemed when it all intensified. That was about when he stopped eating and was only drinking one Ensure per day. He ended up losing 35 pounds (15 put on in anticipation of treatment). He managed to avoid the feeding tube, but we always considered it an option. His neck got really bad - it looked like 3rd degree burns and was very painful. He had no energy and pretty much slept on the sofa if he wasn’t getting treatment. This site really helped me know which meds and creams to request from our doctors. My husband also had nausea.

Mavish

Hi DShaw,

I am sorry that you are here. I am 18 mo off the treatment. I started taking pain medication on my 3rd or 4th week. My doctor prescribed me Liquid morphine and encourage d me to use it. I also took Tylenol and Advil to keep the morphine dose as low as posibble. I rejected PEG. I took morphine about 30 min before meals to ease the pain. I also used a prescription mouth wash consisting of Xylocaine to numb my mouth before meals. 

To maintain my weigth, I had home made soups prepared with fresh vegatables, rice, and cream. I also added protein powder and fibre, after cooking. I also used ensure type drink called Resource (Nestle). Its protein and calori content is higher than Ensure.I bought it from Pharmacies. It help to take more with low volume.

There were times that I regretted for rejecting PEG, becauae of pain. However, looking back I think I made the rigth decision for myself. Since I did not have PEG, I had to keep swallowing.I did not loose my swallowing function and not experieced any difficulty when I was swithcing back to solid foods.

Wish you and your husband a good luck. You will be in my tgougths and prayers.

 

CivilMatt

Welcome

DShaw,

Welcome  to the H&N forum, I am sorry that you are here, but week 4 is a good one.

I had stage IVa, SCC, BOT, 1 lymph node, HPV+ (surgery, rads & Erbitux). 

I had lots  of  pain meds, but did not need most of them.  My big crutch was the magic mouth wash, it is not for everybody, but it was my favorite and I went through 6 bottles. I sipped, swished and swallowed it all.  If you have pain and have pain meds, take them!!!

I had 2 PEG’s (1 very bad, 1 very good), but I always drank 1 meal a day.  I averaged around 10 glasses of water a day because this forum mentioned how important it was to drink and swallow.

Did your husband hear another description beside throat cancer?  I once  asked my ENT if I had throat cancer and he said “no, you have Base of Tongue cancer” and I said “it is in my throat” and he said “it is in your tongue”.  So what gives with you?

Looks like week 4 will be a short one.

Merry belated Christmas and get all well for the new year.

Matt

OKCnative

Hello, I'm 47 and diagnosed

Hello, I'm 47 and diagnosed with SCC BOT Stage 3 HPV+. I too choose not to have a feeding tube (also no chemo port).

My experience was much like 'Christine2080' above - except I was on Cisplatin chemo (3 big doses). I also took in more liquids (Extra High Calorie Boost 4x a day), but I still lost 30 pounds. I think because I continued to work and work our property.

For me, and many people I know, the 4th and 5th weeks are when things start to get bad. I coasted through weeks 1-4. It got bad at week 5 and continued that way until almost 2-months post treatment.

There would be days I felt pretty "okay" - I'd go to work, I'd interact with the family - but there was also two weeks solid I became a miserable hermit (probably weeks 6 and 7). I couldn't talk because it hurt too much and I was producing the grossest mucous I've ever felt/tasted/smelled. 

Pain meds were of no use. My cancer was so low that Magic Mouthwash couldn't reach it. I was never offered liquid morphine. I did have hydrocodone but that did nothing for my pain, but was excellent for my cough. Swallowing became so painful that I developed anxiety just thinking about my next meal. My wife couldn't be in the house because it hurt so bad I'd scream, stomp my foot and tears would be streaming down my face. But, it all passed.

I simply kept telling myself there was a finish line and everyday I was getting closer.

I'm now 3 months post treatment and you'd never know I went through treatment. best of all, I can eat and taste most anything I want (sodas taste horrible and I no longer have a craving for sweets).