This website is great first off and I'm glad there is a place to go and get real answers. I have 7 weeks of combined Cisplatin and Radiation, I was wondering if anyone here has experienced this treatment protocol and at what point does pain become a factor? I know we are all wired different but after 1 week, I feel little to no side effects and/or pain. I am not nieve to think that its not coming but I really want to avoid a feeding tube if possible. Also, does anyone know if the Cisplatin builds up over time? How long does it stay in your system after the 7 weeks?

Thanks for any and all feedback!
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Ron

Welcome to OCF! I am sending you a PM with some info to help guide you with just starting out on the forum. After a few posts you will be a pro.

Many of us including myself have been thru radiation and cisplatin. How many doses of cisplatin are you getting? If weekly it is easier to tolerate vs the 3 big bag method. Nutrition and hydration will play a huge role in how easily you get thru this. Most members have not had a problem during their first week and a few others have struggled from day 1. Every single day get a minimum of 2500 calories and 48 oz of water and you will do ok. Water is very important with chemo to flush it out of your system to avoid kidney problems. Watch closely for any hearing or vision changes and report that immediately to your doctor.

Radiation builds up over time and will continue to work for a while even after you finish treatments. Chemo stays in your system for a while too. Sorry but I do not know exact figures of how long as this would depend on too many factors including dosage, etc.

Best wishes!

That is the recommended "Gold Standard" treatment for HNSCC you are getting, so many others have have gotten it. Cisplatin, a platinum based chemo, has effects on the nerves, kindeys, mucus lining, and can cause vomiting and nausea, so careful monitoring, hydration, is needed during infusions. The kidneys clear the Cisplatin from the body, so it doesn't stay long, so as mentioned, drinking adequte water is necessary. Side effects can vary since acute and late stage toxicities depend on the person, type of chemo, as mono therapy or as a cocktail, amount of dosage, duration and speed of the infusion, underlying medical conditions, and if given with concurrent radiation can compound toxicities. Most side effects are temporary since normal cells can repair themselves unlike cancer cells, which do not, and should go back to normal after treatment ceases, but some can be permament like hearing and vision problems, neuropathy, kidney problems, bone marrow supression, so these need to be checked by your doctors. Smaller weekly infusions are more tolerable than larger three bag dose treatment spread over the 7 weeks. Some get Carboplatin instead to reduce toxicities. Good luck with everything.

Yes,that first week can be very misleading, but enjoy it. I went almost two weeks before really feeling it. As for avoiding a feeding tube or PEG tube as it is called (percutaneous endoscopic gastronomy), it can be done. I did eight weeks of radiation and chemo (Erbitux) the first time without a feeding tube. Heads up that it is hard to get enough calories after you can't eat solid food, but then I switched to Ensure Plus and forced down 6 cans a day. I'm not alone here in getting thru without a feeding tube, Michael Douglas did also, plus many other OCF members. But be sure you are prepared for how hard it is to do this with a feeding tube. For me, it was psychologically important so the extra difficulty was worth it.
Unlike most OCF posters,(with apologies to Joni Mitchell)
[quote]I've looked at PEGs from both sides now, from win and lose, and still somehow, it's PEG's illusions I recall, [/quote]. After the salvage surgery, my epiglottis was damaged so I could not swallow at all. I was surprised at all the complications of a PEG, from leakage, to the tube dangling, to spilling. Whether you get a PEG or not, be proactive in getting adequate pain relief, moving up from Percocet to fentanyl patches (synthetic morphine) as needed.
You can do this, we all have, some of us more than once (like PaulB)
Charm

Hi - ditto what others have said - rads is generally worse than chemo - I found other than mild nausea chemo wasn't to bad. But everyone has their own level of tolerance and is affected differently. Rads will likely kick in around week 3-4 and last for a few weeks after treatment has stopped. I managed without a feeding tube as well. It is doable but you have to be willing to push yourself to get enough nutrition. Best of luck.

Alex and I were warned on this forum that the effects of chemoradiation would likely start making Alex miserable around week 3 or 4 and continue 2, maybe 3 weeks after radiation finished. This seems true as an average.

So when Alex got to week 3 and was still upright, it felt like a bonus. When he made it all the way through to the end with relatively few side effects, we felt we had been dealt 4 aces. He did indeed suffer with mouth ulcers from week 4 and had sleep disturbances through the entire thing, and there was 1 week beyond the end of treatment when it hurt to talk.

The reality was, he was probably very very sick but I think our expectations had been tempered by a dreadful time with induction chemo it was not so bad by comparison. We had been told by doctors that chemoradiation was "brutal" so when it turned out to be merely "just as bad", as the chemotherapy, we felt we had got off lightly.

I believe that because we had been forced into successfully managing feeding and pain management before we even got into chemoradiation, it made a world of difference as to how Alex handled the chemoradiation (cisplatin plus radiation for 7 weeks - same as you). For this reason, I would implore you to take your pain killers at first sign of pain and not wait until you can't bear it which will be too late and a devil to get back under control. Make hydration and nutrition a priority too.

Nausea and vomiting is a well recognised side effect of cisplatin and healthcare professionals go to great lengths to control it (successfully in most cases) but the chemo component also makes the mouth ulcers and thrush worse. These are recognised as radiation side effects, so sometimes people forget that the addition of cisplatin (or any other cytotoxic agent) potentiates these side effects. This is where you will have to just have to persevere.

Hopefully by the time you get the "persevere" bit, the end will be in sight and the countdown to a "good" day will be doable.

It appears that my husband finds anything that is not freshly made (soups, smoothies) tastes "chemically." He has always loved Jello but now finds it so unpleasant that he can't bring himself to eat it. If you are planning to get all your calories from food, it is going to be hard. Our dietitian told us that it's all very well to subsist on soups and smoothies but my husband will be missing some of the essential vitamins and minerals, which you can get in Ensure and Boost. Please try and stay ahead of the game in every respect -- hydration, nutrients, pain management. Don't wait until there is a crisis.

Hi ALL,

Still trying to understand how and when to post on this site. I got some PM and apparently I posted on a 5 year old post my first time. Oops. I really appreciate all your feedback, I knew my first and second week would give me a totally different feel than my 6-7th week. I am having juice - my wife juices: Kail; Spinach; Green Apples and Carrots daily. It doesn't taste bad and my goal is to force this down everyday 3x/day. My only side effect after week 1 is a lump under my jaw that isn't causing pain but it does effect my range of motion in opening my mouth. I know that if it gets impossible to eat then a PEG will be necessary but my personal goal in all of this is to avoid at all costs within reason. I am in healthcare, so I know without proper nutrition, it could effect many other areas of my body. Thank you all for the feedback, we are all in this together! God Bless each of you, patients and caregivers. I lost my Mom, December 11, 1993 from Breast Cancer, I wish there was more computers/websites back then and support for her, my way to honor her is to fight this and live another 30 years. I am so thankful for this website and the people involved. Carpe Diem!

After a few posts, you will get the hang of the forum. It doesnt take long to learn all the ins and outs. If you have questions, please ask and we will help you.

Sorry to hear about your mom!

During treatments there are exercises you can do to help keep your range of motion as close to your usual as possible. Stretch open your mouth as wide as possible and hold it for 7 seconds, repeat 7 times in a row and do 7 sets every day.

Best wishes with your treatments.

This is just my "educated" guess from being on this site for over 6 years...appx 10% of us breeze through this Tx; 10% have problems from day one and the rest or 80% of us really suffer from about week 4 thru week 3 post Tx with the weeks post Tx being by far the worst.