Renal Cell Carcinoma (Kidney Cancer) Support Group

TnYank, I am on my 5th round and have not had any of these problems other than sensitive teeth. I found a brand (Tom of Maine) which worked best with me and I use a fuzzy little pic much more which does not irritate as much. The diarreaha came and went but my butt got very sore. I only wipe with Preparation H disposable wipes. Made life down under a lot more bearable. I also found from session to session the side effects are not always the same so dont assume all will continue the same. My most startling was that my body hair (of which I have very little) all turned grey within a couple of weeks. I wasnt psychologically ready for grey pubes!! Dryness seems to be my most persistent side effect. Best of luck to you.

The worst side effect for me was a sensitive tongue. Soft drinks, tomato products and toothpaste were the worst. I don't have any advice either. The roots of my hair are also coming in white/grey. I start my 3rd cycle tomorrow. I had some dry skin too, but I live in NC and we had some colder weather. Hang in there! Macviv08

Hi, I am currently in a clinical trial.This randomized phase III trial is studying sunitinib to see how well it works compared to sorafenib or placebo in treating patients with kidney cancer that has been removed by surgery. I am in the fourth week of cycle 1. I am also experiencing a sensitive mouth where everything seems to burn. I saw on another site where someone suggested using Biotene toothpaste. I found it at Walgreens. It works really well. It not only doesn't burn, it also soothes the mouth. Biotene has a whole range of products. I also use the mouthwash. It burns a little but nothing like Listerine.

Thanks for the info, Smelia. I'm on day 2 of 2nd cycle and mouth already starting to tingle. I'll look at Walgreens. Thanks again

TNYank,
I just finished by 1st cycle also. I had the same problems as you. Preparation H wipes have helped down under. For mouth senitivity, I found Biotene and saltwater. Biotene comes in mouthwash and toothpaste at CVS if I recall correctly. It is about $9 each. The boils were only on by chest and underarms, so I could cover them.

Good luck with second cycle. I start my 2nd cycle next week.

Cheers,
Gary

Thanks, Gary, for the info.

I just finished my 2nd cycle last night. The side effects noted on the first cycle were less debilitating this time, perhaps in part because like you and others, I used moistened wipes and "Biotene" toothpaste and mouthwash.

Unfortunately, a new and painful side effect showed up: The soles of my feet were so terribly painful I could barely hobble about the last week of the cycle. Thickly padded sock helped minimally.

I had oncologist appointment today and he is dropping my dosage from 50 mg to 37.5 for the 3rd cycle. This, because of the soreness to my feet and because of the havoc to my blood chemistry (platelets).

Keep the faith and let me know how you make out in future cycles. How long does your oncologist plan to have you on Sutent? Mine says "indefinitely".

Dave

Dave,

Looks like you are about one cycle ahead of me, I start 2nd cycle a week from today. So, keep us all informed as I am interested. I am still working so your foot issues would be a real problems for me. I can work from home but trying to "be normal" and the only one at work that know is my boss.

I see doctor next Thursday and will ask about the length of time on Sutent.

All my best and cheers,
Gary

Hi TnYank,
If I recall I went 5 rounds with Sutent. I had most all the side effects you have experienced. Not to "scare" you but I had to give it up because it put me in the hospitsl. For down under I used the "stuff" for baby's bottem, seemed to work OK. The tongue takes a beating. Fresh raw veggies was my food of choice. No salt thank you. It was very sensitive to the tongue. Make sure you go to the dentist often. It seems most all of the drugs I have been on gives me a condition called "dry mouth". The medication does something to the salivay glands to quit working, the mouth gets sores, it is hard to swallow, even my speech was effected. Smelia mentioned biotene products and I agree. A spray is also on the market. I keep a bottle on my pocket and spray occasionally throughout the day. Dry mouth has caused my teeth to decay rapidly even with the necessary precautions. I have already lost 2 upper teeth. My dentist also recommended chewing sugarless Trident gum with XYLITOL. Using the Biotene products and the Trident has helped. Because I could not tolerated Sutent and a clinical trial, I am now on an IV taking Torisel. My mrcc has stablized so far.
Good luck with the Sutent.
Ronnie1

Have just started round 18 of Sutent - been on 37.5 dosage for 14 rounds-- very proactive medical team -- we began using Nexium when acid reflux began to be an issue in round three or four, and Norvasc to head off any blood vessel problems.
Initially, I had difficulty with the taste and mouth situation - but have found a major key to control is drinking plenty of water, a sip at a time - frequently - with the first sip, I swish my mouth thoroughly - this helps to rinse any accumulations of the Sutent meds off the soft tissue of my mouth. I have found that doing this at night, whenever I wake up, reduces the problem considerably. It is rare for me to have any loss of taste or soreness.
Hand/foot syndrome- I learned the hard way -
wear comfortable shoes - but wear them as little as possible - I keep creams on my feet, reapplying several times daily - most good footcare creams will suffice - and a 40%urea prescription cream is good on the "weeks off" - I wear padded socks, and if my feet get wet or perspire, I keep an extra pair or two handy. When riding in a car, or sitting somewhere for a period of time, the shoes come off. I wear socks around the house, never go barefooted anymore, even in bed- I have found that even with creams on the feet, that bare feet in a bed will dry the bottoms of the feet out. There have only been a few instances in the past 15 or 16 months where the feet were an issue, and that was because I could not ( (or would not) follow my hard earned method.
I also had issues with nose bleed on Sutent. I had nosebleeds intermittently prior to that also. I found out that keeping my nose well moistened and swabbed out almost completely solved this problem. Using Neosporin as a moisturizing agent, swabbing my nose free of mucus and hardened accumulations, and then coating the nasal passages with a Neosporin film has stopped the problem. If I don't follow this procedure for a few days - my nosebleed will remind me to get with the program.

Hope this is beneficial -
Warmest Wishes - Mickeral

Thanks to everyone for taking the time to share your own experiences with Sutent. I really appreciate all the advice, concern and companionship.

I'm midway thru my second rest period. Start Cycle 3 in 10 days or so.

Unfortunately, my onc is lowering my dose from the 50 mg max to 37.5. This, based upon the devastation to my feet, but more importantly because of the havoc wreaked on my platelet count. Personally, I'd just as soon stay at 50 and get the max benefit despite the debilitating side effects. But he is, after all, "the doctor". Guess I'll listen to him. (LOL, what choice do I have??? He provides the meds!!!!)

Stay well, stay healthy, and above all, stay upbeat and convinced we ARE gonna beat this thing!