My husband has completed 3 rounds of chemo with Cisplatin, Taxotere, and 5-FU. On Monday he begins radiation (5 days per week for 7 weeks) along with Carboplatin. Does anyone have any experience or tips on this treatment? I'm really starting to get nervous about it because of the side effects that go along with it.

Hi Diane

My diagnosis was the same as Paul's, and the treatment should have been the same though with only 6 weeks radiation. It was changed thanks to Xmas! This time last year I was just finishing my 2nd round of Cisplatin, Taxotere,5-FU when it was decided that the Xmas public holidays would interfere with the beginning of my rad treatment. So the 3rd chemo was dropped so I could start rads sooner. It was explained that the radiation treatment was the bit that needs to be right as it is rads that kills the cancer while the chemo only helps to 'soften' it up. Anyway as it turned out I was very grateful as thanks to the chemo I already had a very sore mouth from mucositis and thrush, and had to have a blood transfusion to bring my blood count up. So I dread to think what state I would have been after a 3rd round of Cisplatin, Taxotere,5-FU. Along with rads I had 2 further rounds of Cisplatin rather than the planned Carboplatin (preferred because I had missed the 3rd Cisplatin). My biggest problem was a very sore mouth and lack of appetite so I ended up being quite dependent on my gastric tube. I then had the usual problems of producing the thick slimey mucus. But I was not too effected by tiredness. I managed to get out for a walk most days, though i did rely on my partner to make me do this.

The level of effects is very different for everyone with or without induction chemo. Although the extra chemo obviously give the body more to deal with so nutrition and fluids is especially important. I'm not sure what the different thinking is behind using induction chemo, but it seems to be more standard in the UK, though not many elsewhere seem to get it. Perhaps someone else knows the answer to that. Anyway as to tips it is the same as for those without induction chemo. Probably best if you post with specific issues as you have to deal with them but the basics are:
- Plenty of nutrition and fluids, swallowing something every day,
- regular mouth washes,
- do exercises throughout the day to open jaw wide, this may help to avoid tightening later on and reduction of jaw opening called trismus (I wasn't warned about this and because i was slow to start eating again I only noticed when I had problems opening to eat a banana!)
- for the later days of rads have in a good stock of paper hankies and something handy to spit into. For going out make up a bag with hankies, small bottle of sodium bicarb mouthwash and a spittoon of some kind (I used a cleaned Fortisip bottle) and if vomiting becomes a problem have a bowl and/or some plastic bags,
- also think about sleeping a bit more upright for when the mucus is a problem, I spent about 2 weeks sleeping sitting on the sofa because I was up every hour to the bathroom to cough up mucus with was closer to the sitting room.
- have easy entertainment available - books, TV/radio, videos, whatever he feels like doing. My thing was Sudoko when I didn't have the energy to read.
- get out for a walk and fresh air everyday even if it isn't for long,
- field phone calls and manage visits depending on what he feels like. I didn't really want to chat especially when my throat was sore and I lost my voice for a while. I did like seeing people (selective) but I relied on my partner to do the chatting, and I enjoyed just listening. But this needs to be explained because people couldn't help asking me questions.

That's all I can think of for now. I am pleased to say that the memories of the bad time fade away quite quickly.
Sally

Thank you so much for the tips. Paul too gets a sore mouth and lack of appetite after chemo. Usually by the time the next chemo starts it's almost back to normal. He's going to try to get through the rads without a PEG.

I had Induction chemo, which has been around for 25 years, with the same TPF chemo that did not go well, and for that reason it is controversial due to adverse reactions that can delay real curative treatments, which is radiation and surgery, but it is very effective, especially Lyrnx cancer, where it was initially used for voice preservation to avoid invasive surgery, but the overall survival is not changed compared to other treatments, I believe. Studies shows HPV positive tumors to respond very well to Induction, and are now adding Erbitux to it as well. Chemo makes radiation work better, and acts as a radiosensitizer. It can improve radiation, depending on chemo used, anywhere from 2-30 percent, so each are different. Cisplatin is gold standard, but carboplstin is said to be almost as
effective, with less side effects, and less toxicity on the kidneys.

Sally has some good advise on treatments. There are prescription, and OTC medication to help with pain, oral care, skin care, and adequate nutritional advise to maintain your weight, and hydration, which are most important. Good luck.

I second everything Saxicola has to say. I would add that it's extremely important to pay attention to the emotional impact of treatment as well. Treatment is by its nature traumatic. Having one's head bolted to a table with a rigid mask is traumatic. Having that thick, disgusting mucous is very distressing. Being worried on some level about what will happen, work, the future, our finances, not being able to be the husband cause I'm so damn sick and miserable....is draining and anxiety provoking. One can become overwhelmed with emotions, cry even though he never did that before, and can have times when sadness can become overwhelming. Treatment is tough, but temporary, and somehow we get through it with support and prayers and the help of our friends and loved ones (and the good people on this website). When things are bad it helps to remember that most or much of it will pass: at least some taste will come back, the mucous will thin out and turn to foam, appetite will eventually come back, the sores will heal, the pain will ease and go away (I was lucky and had very little pain, not needing any narcotics until I developed some unusual complications (not directly related to rad or chemo). I kept telling myself it was like brain freeze from eating ice cream too fast: a bi...ch, but temporary, and with my wife's help I was able to bear it--though I did not often grin while doing so...

Well, after 2 weeks and 2 days of radiation the side effects are here. Sore throat, sore mouth, no appetite. We have the Magic Mouthwash, Fentanyl patch and Vicodin. I know this is just the beginning. So far Paul's attitude remains positive. He's still working, grocery shops for things he thinks he might like to eat and sleeps a lot when not at work. I really haven't been much help as he is determined to do as much as he can for himself for as long as he can. He's "saving" my help for later when he may need it more. I have always had faith that his course of treatment is the right one and will "cure" the cancer. Lately though, the more I read on this website I'm finding more and more that most of you have had recurrences. Is this really the "norm?"

Not as many with HPV have the recurrences so please don't overthink this. Most don't really start to feel the nasty part of this Tx until right after the 2nd bag of Cis so if you must do something just prepare for that and hope he's one that doesn't even get hit that hard.

Most members of OCF have NOT have recurrences!

Many members go thru treatment, recover and move on to their old lives. So many one time patients are doing great and they dont check in very often. I personally know far more one time OC survivors than 2 or 3 timers.

I think recurrences are discussed so frequently as its such a huge fear we all have. Try not to be concerned about the "what if's" and try not to worry about recurrences. Worrying wont change if it will come back or not. I used to avoid the recurrence tab like it was the plague, it didnt matter it still came back anyway.

Its a long road thru treatments but hang in there. Its not easy but it can be done. Please feel free to ask any questions you may run into with treatments.

best wishes!

I hit my 5 year mark in about a month and no recurrence so there's an example

Treatment sucks, no joke and I questioned many times whether or not I should pack it in, sure glad I didn't. You and Paul hang in there and reach out for encouragement when you need it, it's what we are here for.

Keep your chin up,

Eric

There are stats, but many factors are involved, and HPV has an increase in overall response of 20 percent, and even heard 30 percent across the board over non HPV, and HPV is show to respond well to Induction Chemo with better outcome. Good luck with the rest of the treatments.