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1 year since relapse diagnosed

Aptos guy's picture
Aptos guy
Posts: 5
Joined: Mar 2017

Hello, I am new to the blog. In early Dec '05 I was diagnosed with Renal Cell Carcinoma, a 6.8cm tumor on my left kidney. I had a radical Nephectomy 10 days later. It was performed Laparoscpically. 5+ years of scans all fine. In March of 2016 (10+ years later) I asked my PCP about a lump on right flank that had recently started getting larger. A biopsy revealed RCC. More tests and 2 more tumors in my Pancreas. Biopsies confirmed RCC, all clear cell. Started on 800 mg Votrient in April of '16. After 1 month took me off as side effects were pretty extreme. After a 2 week break, started back on 400 mg (2 pills) per day. Went for 4 months side effects just slightly less and lost 35+lbs. Then another break for 4 weeks and a vacation. CT scans showed tumors reducing. Began 10mg (full dose) Inlyta 5 months ago. CT scans continue to show progress, now a total of about 44% reduction in size of tumors. Side efects on Inlyta much less, thank goodness. Primarily bowel related, mostly manageable. Weight stable. My hair is even coming back in its normal color. Now about 1/2 light brown with white highlights.

Does anyone have experience with Inlyta? Any suggestions (in addition to immodium and probiotics) to control the roller coaster bowel issues? Any experiences with how long the Inlyta will continue to be effective?

I have heard there are some trials with Inlyta and Nivolumab together. Any one hear anything about them?

A curiosity: I was diagnosed with type 2 diabetes in May of 2014, metformin prescribed. Since I started on the chemotherapy, my blood sugar has come down and the metformin dose reduced. A1c been holding about 5.5. Doctors say no correlation (tumors in pancreas, diabetes, etc??)   

BTW, any suggestions on what I can do with a bunch of unused, un-opend Votriet? My 2 doctors can not take it other than to dispose of it.

Steve.Adam's picture
Posts: 460
Joined: Oct 2016

Hi Aptos. I don't need any Votrient (no mets) and hope I never do. I am also T2 diabetic, so I have an interest.

I keep my blood sugar in the normal range with a very low carb diet and I recommend it to anyone, at least to try for a while. My last A1C was 4.7. I am not taking any medication.

An A1C of 5.5 is in the normal range, I think, so something has changed for you.

How has your appetite been on chemo? Eating less, reducing carbs, losing weight can all help with diabetes.


Aptos guy's picture
Aptos guy
Posts: 5
Joined: Mar 2017

Hi Steve,

Glad to hear that you do not have any mets, that is excellent.

And an A1c of 4.7 with no meds is fantastic.


My appetite on Votriet was not good at all and my taste was very bad too. Now on Inlyta my taste is pretty much normal and appetite is good. I also feel a lot better and hvae more energy.

I have been eating a fairly varied diet, carbs and all. I do have another A1c test this week. I will be very interestested to see how it is with my current diet. My daily AM fingers pricks average around 100. 

The low carb diet sounds like it could benefit me even more, perhaps lose a little more weight and maybe take less metformin.

Thanks, Bob




NewDay's picture
Posts: 273
Joined: May 2012

I have been on Inlyta for 3 years with great success. My last scans showed no visible evidence of tumors.  Of course, this doesn't mean I am cured but it  is the next best thing.  My doctor allows me to take breaks from it every few weeks because of the diarrhea.  That is risky, but so far it hasn't been a problem.  immodium will work for a week or so, but then it becomes less reliable.  There is also a prescription drug Lomotil you can ask your doctor about.  I hope it works great for you also.

Aptos guy's picture
Aptos guy
Posts: 5
Joined: Mar 2017

Thanks and congratulations on your terrific success! Your experience with iNLYTA and imodium sounds very familiar. Just 6 months with the iNLYTA for me so far, but it is working. I did ask my local oncologist about Lomotil and he was rather non commital about it. No prescription. I am checking with the oncologist that I also see at Stanford. 


Manufred's picture
Posts: 241
Joined: May 2017


Your first posting asked about Nivolumab in combination with Inlyta.  Nivo seems to show good results for melanoma, some renal cancer and possibly others. I had it for mRCC, with Ipilimumab first (Checkmate 214) and after 2 years my side effects are minimal and totally acceptable.  I have no experience with Inlyta.  Hope you are travellng well.

Jan4you's picture
Posts: 1326
Joined: Oct 2013

Hi Bob! Although I cannot relate to your inquiries, I just want to welcome you~

We'll be on this journey along side you if you want us to be.

Also try SmartPatients.com too for answers to your questions. 

Sending you healing hugs and HOPE!


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