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Still in schock

luvofmylif
Posts: 344
Joined: Sep 2012

I am new to this site. My husband has stage 4 BOT HPV 16 SCC with mets to 3 lymph nodes on the right and none on the left. He will be starting chemo and rads later this week or early next week. I have read so much on this site and am so nervous about the outcome of it all. Because he had all negative nodes on the left side of the neck they have said that they will not need to radiate that side. I am hoping this will decrease some of the short and long term conseqences of treatment Bottom line, the treatment scares me to death but I know I want the cancer to be erradicated. I have been reading posts on this site for several weeks and know that you are all brave and supportive. I only hope I can be as brave. Fear overcomes me at times.

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

First, though it's all very overwelming, most outcomes are very successful.

I was STGIII SCC HPV+ Tonsils...chemo and rads.

I'm kind of surprised to hear that they are only doing one side for rads. The more common protocul is do to both sides regradless, but maybe less on the non-affected side.

That's how mine were...right tonsil, and a lymphnode on the right...rads both sides..., sopmething like 70Gr on the right and 60Gr on the left.

Either way, I'm sure you guys are glad to get the ball rolling....

Best,
John

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

a lot of us have been through similar, and have come out fighting on the other side.

please don't forget to take care of yourself during this train ride. I believe a lot of cancer centers offer (free) support and stress reduction services for caregivers, in recognition of how important caregivers are. might be worth looking into.

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I just wanted to say hi as a fellow caregiver. I am not that far ahead of you, but as things get going you just kind of go with the flow. People here are great. It is comforting to have so many people who understand where we are going.

CivilMatt's picture
CivilMatt
Posts: 2921
Joined: May 2012

luvofmylif,

I welcome you and at the same time I am sorry for you being here. It is overwhelming to all of us at first. You will get your stride and things will be more manageable. I was stage IVa, scc, BOT, 1 lymph node (left side of neck) & hpv+, very similar to your husband. The treatments kicked my butt (a little), but I made it through and so will your husband.

Fellow warrior,

Matt

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

So sorry you have to be here, but what a great bunch to hang with if you need something.

I'm sure you have seen the SUPERTHREAD that is always at the top of the page, so be sure and read through that.

I was Base of Tongue stage III (as close to IV as you can get) with 1 lymph node (left side only) and my treatments consisted of Erbitux ( a form of chemo I was told, but not using the platinum chemo drugs) and radidation. I too was HPV16 +.

I tell you I went through heck (not to scare you, but just to be informative) ...yes, the treatments are brutal, not just to me but to my wonderful wife, bless her heart, me, five kids and I was getting my treatments 100 miles away (I stayed in an RV during treatments in the treatment center parking lot). Uuugh. Keep in mind each person is different, but at the 8 month mark I have gotten a PET/CT 3 months after my last rad and at 6 monhts after my last radiation a CT/w contrast and even an MRI of the brain...and all has been clear.

It may be tough, but the last few weeks I have been taking a chainsaw along with my 3 oldest boys and cutting wood for the winter in the Payette National Forest...I would not be here today if not for treatments....

You hang in there, everything you are afraid of is normal and all of us have or are going through it and we care!!

Whispered a prayer just before hitting post that your husband's cancer will be beat back to heck and you and him will have many, many years to come and with little to no side affects ......

Tell your husband us Base of Tongue patients are the toughest of the H&N group :) :) (well, at least the most stubborn if my wife could tell it)

Best,

Tim

Hard12Find
Posts: 203
Joined: Sep 2012

We are all here for you, for comfort, companionship and advise.......I am glad you found this site, it has been a blessing to me, but also reminds us every day that we are dealing with a treacherous disease. Prayers for you and your husband.
Jim

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Since you're been reading a lot on this site, I'm sure you've noticed, and I want you to keep in mind the fact that there are a LOT of us here who started this rodeo at Stage IV, and made it through treatment, and on to clean scans. Treatment's not for wimps BUT wimps make it through, too. Also, as you know - the HPV positive status is a hopeful point.

As always, my big advice - WATER WATER WATER. For both of you. FOr your entire family. You all need to take good care of yourselves - hope you do a great job.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I don't think we are particularly brave, but we are supportive. You will do just fine as a caregiver. Just a hint: When I was in the ICU and doped up with narcotics, I found laughter on the TV (low volume) was helpful. Also a cheerful voice from staff and visitors went a long way. I don't think I followed conversations or TV programs all that well. It was the mood conveyed by the tone of voice, rather than the actual words. Rick.

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

I had the same diagnosis as your hubby minus the HPV+. My treatment was 35 rads and 3 cistplatin(chemo) treatments over a 7 week period. Two years on and I am doing fine and my life has returned to its pre-cancer days. No lingering side effects, aside from a bit of dry mouth.

Sure the treatment is no picnic, but it is definitely worth the effort and pain. I lost about 25 lbs during treatment and food tasted like crap during and after the chemo/rads.

One thing I would recommend is that your husband try and stay active during treatment. I know it can be tough to do, but a daily walk may be beneficial in keeping his energy level up, fighting fatique and also keeping his mental state on the positive side.

Good luck during this and Stay Strong! Cheers.

Jimbo

yensid683
Posts: 225
Joined: Apr 2012

I know that it is scary right now, I had a similar dx, BOT, HPV+ stage IVa, with left lymph node involvement. The nodes is how the found the primary tumor, I was basically asymtomatic up until that point.

the first few weeks after dx were the scariest for my wife and I. We kept running the 'what if' scenarios. My wife had a lot more fear than I and I can understand how you're so scared as well. She was concerned about my life and about my quality of life. She envisioned radical surgery, removal of my tongue, jaw, larynx etc and looking back on the experience (I'm 75 days post rads) It was a WASTE OF TIME to worry so!

I know it is easier to say 'don't worry so' than it is to do, but you can give up the worry and concentrate on your husband's treatment and recovery. He will need your love and support as he will not feel all that chipper during treatments.

Each patient has similar, but different reactions to treatments. I had a lot of throat pain, though well controlled with pain meds (don't worry about addiction) Lots of mucus produced and hacked up during treatments and post rads, taste distortion, swallowing challenges and through it all my wife was my task master, drill sargeant and ardebt support. At times I hated what she was doing and resented it like crazy, but today I am still able to swallow, I'm moving off of a largely liquid diet to solid foods and if it wasn't for her help, I might not be.

I would suggest that you both talk to the dr. about a PEG tube, I was able to keep my weight under control with it. I lost about 25 pounds early on, but during rads it stayed stable.

Worry is not good for either of you, you'll impact your health and not be available to lend strength to your husbands fight. He will need you, he may not show it, may not always say thank you or show his appreciation, but he will know how much you care and how lucky he is to have you. I know that my wife doesn't realize how much she helped, but I do.

Keep smiling, it will get better. It may take a while, but it will be better

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