My Votrient arrives on Monday....

Texas_wedge said:

2 days

I endorse Ron's comments.  [I find out tomorrow whether it's continuing to work for me after 6 months.]

Good luck everybody. I'm pulling for you all.

Blueraidermike said:

My experience

I took Votrient for 5 months to shrink tumors before surgery.   It worked for me.  I took it 2-3 hours after dinner.   The side effects were managable.    I lost sense of taste about 20 days in.   I experienced bowell issues; but managed them with imodium ID and wipes.   I adjusted some of the food I was eating; in fact, sense I couldn't taste food it made it easier to eat healthier.    My hair on my body (all over, except my head, I am bald?) lightened up.    Regarding BP changes, the key is to by a BP cuff and take it every day to watch it.   My BP before Votrient was 115/78 on average, on Votrient it did rise but still at a decent level.    I was able to work (travel extensively) and excercise (runner) throughout the treatment.  

The key is to manage the side effects, recognize them and make a change.   Your Doc will be watching your blood work for liver changes.     

Hoping everyone's results turned out well.. TW?  Thinking of you!!

Blueraider...i am bit curious as to your situation. You took Votrient BEFORE surgery?  What size was the tumor before hand? Would you mind sharing your information?  I am glad things are working for you.  I always wondered why they didn't try to use the Votrient and other meds before surgery to see if the tumors would go away and spare the kidney, so your info is of interestert to me. I do know they like to remove the primary tumor anyway.

Hugs to all!

Blueraidermike said:

Angec,
Here is my experience.

Angec,

Here is my experience.  I had my right kidney removed as a child due to a different cancer. I was dx in July of 2012 and they felt like it they could shrink the tumor the chances for a successful open partial would be increased.    So my tumor was about 6.5*7cm. , so since I only had one kidney our goals were to cut out the cancer but to preserve the kidney so I could qualigy for existing treatments and future clinical trials (I have lung mets and other suspicious spots).      After 5 months it wasn't down a lot, mayber 5.5*6cm but was full of necrosis - dying on the inside.    I was up for staying on the Votrient but the surgeon felt like he could successfully remove the tumor so we went ahead.   From a timing perspective, started in Sept and stopped late January. Then surgery on Feb 12.   So I am operating on 2/3's of one kidney today and awaiting my slotting for a phase 1 clincial trial of the NIB/Ipi combo.   

Bottomline, as we all know there is a lot of "art" applied to the science.   No hard and fast rules, but the risk worked out in my case. 

Thank you blue for the info.  I think it was a great idea to take the meds before hand and it it seems to have worked nicely.   I am hoping you get in the trial real soon and it works very well!  Please keep us updated.  All the best to you and I really admire your positive fighting attitude!!  Keep it going!!