Question on new med -Votrient

Sammie23 said:

OPDIVO

My oncologist has taken me off the Votrient. They now are wanting to put me on Opdivo every 2 weeks. It almost feels like a step back. When I had gotten off the IV chemo years ago I was put on pills which was a blessing in disguise. Since I work full time managing my meds was much easier. Now Im going to have to manage my life around the time I need to take off to do the Infusion treatment.

Now im worrying about the cost of everything, from office visits, meds and a new surgery ahead of me (2nd one in 5 months). It been pretty overwhelming and Im hoping this will pass to where things will work out. Especially praying that the medicine will work for me.

The phrase when it rains it pours... well I feel as if Im in a hurricane.

Are the same thing. Having tried sutent et al and measuring my day by the number of trousers I got through. Nivo was a revelation, virtually no se's (rash, dry mouth) it seemed like heaven - I even enjoy my fortnightly visit to the nurses at UMMC for the infusion. And it worked; for a while. Now we proceed with the Nivo + radiation with the power turned up to 11 and see what happens.

Ed Brabant said:

Votrient

3 1/2 years on Votrient. hair went white. 800mg never any less. About every 3-4 months I take 3-4 days off. For me its like my body resets to the medication. Do have muscle soreness. Nothing that I can't deal with. Last scan showed a bit of bowel inflamation. Stopped for a week per doctors order now everything is fine. I take Lamodal (sp) for the diarrhea. For me taking it first thing in the morning worked best. Was taking it at night. Less issues in the morning. I go thru appatite swings from wanting to eat everything to not hungry at all. Thats about the 3-4 month time frame and stopping for the 3 days or so takes care of that. Taking 5mg Lysonipril for BP issues. Was taking that before. Thyroid was screwy taking thyrozine for that. I go to MGH in Boston. I have access to all my test results on line. This October 18th is 5 years. Nov 2nd 5 years ago had my right Kidney removed. Went through 2 rounds of IL2. Don't remember the first round at all. 2nd Round almost killed me. Remember everthing. NIGHTMARE!!. But rather than a home run is was a wall ball double. Looked at the results when I started taking Votrient and compared the size measurements from then to now. They stuff in my lungs has shrunk by more than 1/2. 5 years ago I never would have thought that I would had survived this long. I feel great. Still do everything that I did before this journey started.  Seeing the doctor next Thursday. 

What a great report, Ed.  Thanks!  Very encouraging for us Votrient users.  Hope your doctor visit is good.

Ed Brabant said:

Votrient

3 1/2 years on Votrient. hair went white. 800mg never any less. About every 3-4 months I take 3-4 days off. For me its like my body resets to the medication. Do have muscle soreness. Nothing that I can't deal with. Last scan showed a bit of bowel inflamation. Stopped for a week per doctors order now everything is fine. I take Lamodal (sp) for the diarrhea. For me taking it first thing in the morning worked best. Was taking it at night. Less issues in the morning. I go thru appatite swings from wanting to eat everything to not hungry at all. Thats about the 3-4 month time frame and stopping for the 3 days or so takes care of that. Taking 5mg Lysonipril for BP issues. Was taking that before. Thyroid was screwy taking thyrozine for that. I go to MGH in Boston. I have access to all my test results on line. This October 18th is 5 years. Nov 2nd 5 years ago had my right Kidney removed. Went through 2 rounds of IL2. Don't remember the first round at all. 2nd Round almost killed me. Remember everthing. NIGHTMARE!!. But rather than a home run is was a wall ball double. Looked at the results when I started taking Votrient and compared the size measurements from then to now. They stuff in my lungs has shrunk by more than 1/2. 5 years ago I never would have thought that I would had survived this long. I feel great. Still do everything that I did before this journey started.  Seeing the doctor next Thursday. 

Excellent news!  Hope your visit goes well.