I'm scheduled for 33 doses of radiation and three doses of Cisplatin. I had my 2nd dose of Cisplatin last Thursday, and it was more nauseating than the first. I just had my 18th dose of radiation, and only now realized that the "hot head" feeling must be from the radiation. Since radiation started, I would experience a hot head, which I could cool with my own fingertips (though a towel or ice worked better).

Good news is 1.) I am still eating, though food mostly tastes like nothing. Chicken soup still tastes tolerable, but most food is a grim slog to get through. 2.)No swallowing difficulty yet. 3.) No big pain to date, beyond the chemo nausea and the hot head and fatigue. 3.) still have a full head of hair, FWIW.

Bad news is I lost 8 pounds, mostly from nausea of 2nd chemo dose plus the loss of almost all flavor.

Do they still make Carnation Instant Breakfast VHC? I could not find it on Amazon. I have some Ensures, (only 350 cal) but they taste so much better than the Boost VHC. Though I cannot taste most sweet flavors, that Boost VHC was sickeningly sweet.

Although I know it's very personal, are there foods that remained tolerable some can recommend? My mileage may vary, but I won't know till I try. Someone said pickles, but the kosher dills I tried flatlined.

Thanks, all,

JD

PS I had a brief constipation issue from the drug ondansetron. I won't take that one again-- I prefer the nausea.;-) I do also have compazine which does not have that side effect.

JD, my thoughts are with you all the way. You've got a terrific attitude and I know you're going to get through this and come out the other side.

In fact you're doing better than I remember in terms of eating progress, so keep at it!

As to individual foods... I was strictly on the liquid nutrition, couldn't handle anything solid after a couple of weeks. Once I got back on I was eating vegetable soup and maybe oatmeal. But I'm a vegetarian.

Please keep us posted on your progress all the way.

Courage!

JD Odansetron is one of the constipating ones, but there are others. I found Pramin worked for me. Keep on top of nausea and constipation, and be very conscious of them interfering with you nutrition and hydration. We will harp on about it but its critical to keep your intake up.

Food is a funny thing. I found a couple of things worked for me. I had to visualise eating it, geting it clear in my head that this thing was ok to eat and wouldn't hurt me. I had strange cravings, they came and went. I found things that always taste the same were good. Like KFC potato and gravy, or a hotdog (minus the bun). Every time you've ever had one of those they have always tasted the same, and when it smells right and looks right you can sometimes override the taste that says its not right. Chicken and corn soup was a staple for me. Experiment with different things, you'll have some setbacks but the little victories will make life better than forcing down Ensures all day.

Carnation VHC has been replaced/renamed to Boost VHC and it's available online. I never lost my sweet taste so to me even the Carnation IB VHC was sickeningly sweet. But then every thing made me toss my cookies . I would have to go to the bathroom, cut any lights off, pinch my nose, close my eyes and gulp a can down and then cover my mouth while standing over the sink and hope it stayed down.

Re your other comments about how you feel after Cis #2, you are unfortunately NORMAL.

Cisplatin does not cause hair loss. If you have an issue with constipation and nausea, let your doctor know. There are other anti-emetics that they can prescribe instead of Ondansetron.

Thanks all. @Gloria, my MO told me I would lose my hair from the Cisplatin, and I have had very minimal hair loss (maybe 5-10%) which I thought was from it.

I am having hearing side effects, some little airplane like pressurization fizzles, that sort of seem like a ten second tinnitus, then stop. I had hearing tested, and showed a deficit at highest range (which might have preceded the treatment-- I have no baseline). I also am experiencing a little neuropathy, like losing grasp on a water glass, for instance. I've told my MO and am heading for hydration today.

I used Ensure High Calorie, which was about 500 calories each if memory serves. Still, because I was continuing to lose weight my nutritionist said mix in a pack of Carnation Instant Brekfast with each one, it would add an additional 250 cals. I tried it once, couldn't stand it.

A daily stool softener helped with the constipation nicely.

It's great that you can still eat some stuff; by about week 3 or 4 of rads I was on an Ensure only diet. It got me through treatment, but I'll probably never drink another one.

Keep fighting, you will get there

Tony

Definitely tell your chemo doc re the hearing issues as Cis can have that permanent side affect. I spoke up too late and I have hearing issues which will never improve due to Cis. They may switch you to Carboplatin which is supposed to be just as good as Cis but doesn't cause hearing loss (yeah just go ahead and ask that obvious question) or just forgo the 3rd chemo.

Its very important to have a discussion with your physician about your hearing issues, prior to getting any more doses. Cisplatin is known to cause permanent hearing loss.

Best wishes!

It is also important to mention the neuropathy. We met another patient at the hospital who developed really bad neuropathy from Cisplatin. If he is not intently looking at the piece of bread he is holding, he will just crush it without being aware of it. It seems to me that the neuropathy may get worse over time, so let your doctor know early.

JG,

I am glad you are handling Cisplatin (tolerably) well. Be on the lookout for the side effects they warned you about, though (hearing loss, tinnitus, etc.) as they may come on suddenly and should be addressed immediately.

I lost about 20 pounds in total during my treatment and have lost another 10 since due to persistent nausea/vomiting issues so listen to these fine folks and keep doing what you can to keep your weight up.

I found that unprocessed foods (cabbage, plain beef, cucumbers, watermelon) held their flavor tolerably well although any sugars burned my throat and even these sorts of things kind of changed flavor a bit. For example, beef tasted mostly like beef, but a little less so -- at least, however, I could eat it without feeling revolted. That would be my advice.

I had a similar problem wih pickles and still do -- they taste rubbish to me -- metallic and chemically -- a guy I saw every day in treatment said he still loved them -- guess it's an individual thing.

Hang tough and listen to these folks -- they helped me get through -- you're living the journey and you will make it through to the end.

The Hellion

P.S. sounds like you have a very positive attitude.

@Gloria-- my neuropathy works the other way. I'm holding a mug of coffee or pint glass of water and it will slip through my grasp easier than it used to.

However, the prevailing opinion from my nurses is that Cisplatin related neuropathy often fades away after treatment. My MO has adjusted my last dose to 2/3rds of the other two.

I am ten months out from treatment. Stage 4 HPV positive tonsil cancer. My treatment was Cisplatin and 6.5 weeks IMRT.
Personally, the end of treatment and the month or so following was the worst time for me. I was able to gag down Ensure and Ensure plus. Water tasted swampy which I think was just the result of my burnt nasal passages due to the radiation. Fuji water seemed the least offensive plus the natural silica helped to lubricate and keep my throat from drying out too much. Stay hydrated, very important. Take a probiotic, they are available in pill form and easy to swallow. I did not get enough nutrition and I went in once between the Cisplatin treatments just to get a hydration IV. Protein supplements and dextrose were mixed with whole milk and vanilla frozen yogurt with chocolate syrup just so I could get enough calories and nutrition (plan ahead, I always seemed to be a week behind trying new sources of food). For me, the Ensure just became unbearable. Try not to smell your "food" while eating. Plan on using a humidifier, dry air is painful. Keep a daily log of your calories, protein and medicines to help you focus, plan and keep your spouse happy.
So far, I am cancer free. Taste buds are still off. Lymphedema is gone. Swallowing is requiring less water consumption. Chew sugar free gum, it will help with the reduced saliva. I didn't need to shave for quite some time but the hair on your head should be fine. Another plus is that I think the radiation killed the herpes virus that was causing my recurring fever blister.
Best of luck
(P.S. I watched the Food Network while I was starving, crazy diversion)
Steve

Hi Steve,

Thanks for your response. I compleated my radiation & chemo and now have one more hydration tomorrow. The radiation presents an occasional "flaming pain"-- quite regular in beats to pain (thump /thump/thump). That's when I turn to Roxicet rather than ibuprofen. I am also using Silver Sufiazide a few times a day (as well as Eucerin/Aquaphor in between). All but tank tops are hard to wear for the abrasion they put on colarbone, etc.

My chemo sickness is abating, and I have kept up with miralax to keep the pipes moving to good effect. Now it looks like the challenge is to find food that is tolerable and edible. I will put a separate post up about that.