Cisplatin Chemo Question

My husband received 35 radiation treatments & 6 of the 7 Cetuximab (chemo) treatments for BOT SSC HPV+. His doctor decided not to give him the last chemo because his neck was so raw. The way she explained it to us was that the chemo pushed the radiation through the body & since she felt it was being effective they decided against the last treatment. My husband (and I) were relie, but the February 14 PET scan will tell the tale. Fingers crossed there is NED!

Same for my husband...the second dose was the hardest.  They cut my husband's final dose, 3rd, in half because of his labs. My husband said he thought the full dose would have done him in because he was having such a struggle with everything by then.  However, he had a very advanced stage BOT, HPV +, SCC cancer and decided going into the treatment plan that he would probably only get one swing at this awful beast so he wanted to do everything possible to knock it out during the initial treatments.  So, he committed to himself that he would follow the recommendations of the medical oncologist about the third dose.  I asked him before the appointment to make the decision about the 3rd dose, if he would be relieved or disappointed if they recommended he not have the final dose.  As weak as he was, he said he wanted to have it if he was medically eligible and would be disappointed not to be eligible.  I felt the reduced dose was something he could embrace.  I do think in time for HPV +, less advanced stage cancers, there will likely be a less agressive treatment plan.  Just take in what the treatment teams says and then I felt in the end it was up to my husband and I could support whatever he decided. Courage and positive thoughts headed your way.  

They don’t just give you the third does “just because”. Cisplatin, as horrible as it is, is really truly an amazing anti cancer chemotherapy agent. In fact, despite so many platinum variants of cisplatin that have been made (carboplatin, etc) cisplatin is the most potent, most toxic, and most effective chemotherapy for this particular cancer. Dose three is important, but must be weighed against potential collateral damage. For example, I’m scheduled for my third dose this coming Tuesday, and there is concern about my kidneys because my creatinine shot up from .8 to 1.2. That third dose probably isn’t as important as serious permanent kidney damage, so they are trying to get that number down with IV fluids and doing blood work on Tuesday. Personally, I wouldn’t make any move without getting the advice from both the med onc and the rad onc. There really shouldn’t be much leeway for decision making when they weigh in. They are the experts who know the studies and know what to anticipate in their clinic.

Dose 2 absolutely wrecked me, and I’ll thank God and smile if they can put that full third dose in me.

I don't think anyone can tell you what to do.  It is a personal decision.  I can tell you what I did - I was HPV+

I finished my 33 rad treatments in mid-September (2017).  I also had weekly chemo treatments (Cisplatin).  After much research I concluded the Cisplatin negated the benefits of the type of radiation I was receiving, so I stopped the chemo after my second round.  It felt like I was rolling the dice, but that is what I did.  I felt pretty confident that current practice is overtreating those of us with HPV+ tonsil cancer - but that is only my opinion.  I asked my radiologist if she felt they were overtreating me and she said "yes" but more research is necessary before they change current practices.  The cure rate is very  high for HPV+ tonsil cancer, but it isn't 100%.  I think Cisplatin increases the cure rate by 6-9% - and those studies included HPV- subjects.  It wasn't worth the trade off for me.  I value quality of life more than longevity.

I can't say treatment was a breeze, but I am finding that it was the easiest part of the process.  I did very well.  I only lost 9 pounds.  Never had a problem swallowing.  Minimal mouth sores (I oil pulled with coconut oil every morning and sipped aloe vera juice all day)  I think I used pain medicine for the last 1.5 weeks of treatment and for about two weeks after treatment. Then I got a break from the pain for about a month.  Now I need pain medicine to eat some meals.  

I am struggling now with decreased appetite, some pain when I swallow food (it is actually worse than when I went through treatment), but it comes and goes.  My taste is returning but it is different.  My old favorites aren't favorites anymore because of the taste changes - I finally understand what people meant by this.  I am trying to find those new favorites - but honestly I just don't enjoy food right now.  I don't taste sweets - they aren't even a temptation anymore.  Emotionally, this has been the hardest part for me.  It is such a loss because so much of the way we relate involves food.  I feel like I am on the outside looking in when there is a family celebration or we go out with friends.  I don't get to participate.

I just had my 3 month post treatment PET scan.  It was clear!  So right now I am feeling pretty good about my decision.  I just need to get this eating thing down.

Blessings

I feel the same as you about the food and am about 2 months out from the treatments and am getting nowhere when it comes to eating. Never did use my PEG tube but still on liquids only just because of the way stuff tastes.

Depending on who I talked to, they said it could take at least 6 months to get back to eating or shall I say enjoying food. UGH. I did take all 3 chemo treatments but I suspect it was the 33 rad. that did it. Still have the cotton ball in the throat feeling with some pain, whiskers not coming back any.

47-years old, male, SCC BOT HPV+ stage 3.

I can only speak from my own experience and I am 4-months post treatment right now.

I had no surgery, 35 rads and 3 chemos. I didn't do a PEG nor a chemo port and took no pain pills or anything other than a steroid after each chemo. I was never given the option of stopping at 2 doses of chemo. Probably because the chemo didn't effect me very badly. I never threw-up, never felt much worse than having the flu and I unapologetically used THC edibles to keep my stress, pain, nausea and anxiety under wraps.

Personally, I think that as long as you can physically take it - I mean really take it, not just "I really don't want to do it" - then by all means you should take all 3 doses. Maybe it only helps you by 5%, but that's 5% you don't have to worry about. I tried to keep a very positive attitude the entire time (even when I recently received a false lung cancer prognosis). I credit that atittude of just get through this without whining, or self pitty and I'll be better for it on the other side.

I wish you well!