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Stage 4 renal starting on Sutent

sierra28
Posts: 70
Joined: May 2014

Finally after 6 weeks and  3 biopsies they found that the nodulars on my lungs were from mets of renal cancer.  Starting Sutent on Monday and would like to hear from others who started on this chemo and the dose and results. My doctor thinks this is the best one to start with because the nodulars are very small. I am afraid as I am sure every one of you who had to go thru this is.    I had anal cancer in 2014 and went thru 7 weeks of radiation and 2 weeks of chemo and I am now in remission.

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

Hi, Sierra;

My surgery was in February of 2013.  I'm stage 4, as you are.

From April 2013 to April 2014, I was on an Everolimus test trial.  My cancer first came back in late 2014.  It showed up as 4 or 5 (two spots were real close to one another and there is some question whether it's 1 spot or 2) spots in my chest.  All were fairly small.

I went on Sutent.  There is a standard dosage that is pretty high.  I think that's the initial target for everyone who goes on it.  I couldn't deal with the full dose.  Standard is 4 weeks on and 2 weeks off.  I could handle a 75% dose on a cycle of 2 weeks on and 1 week off.  I also went through radiation.

The drug (and radiation) worked pretty well.  Half of the spots are gone and the other half are reduced in size.  Even with that improvement, one new spot showed up in Nov or Dec of 2015.  We took that as a sign that the Sutent was losing its effectiveness.  A switch has been made for me; I am now on Votrient.

My side effects with Sutent were OK to deal with.  Clearly easier to live with than Votrient.  It's a closer call to compare with Everolimus, but I think Sutent was easier to put up with than Everolimus.

I did well while using Sutent.  However, we don't know for sure whether Sutent would have been as effective if I hadn't gone through the radiation.

Throughout, I've had pretty close monitoring by my oncologist.

I hope that this helps you.  I think you can be cautiously optimistic about how you'll do with Sutent.

Pfizer has a program whereby they cover the patient's share of the cost of the drug.  Except for excluding medicare people, the program's criteria is pretty broad.  You may qualify.

Cancer has been especially hard for you, having two types of cancer.  No one should have to go through this twice.  I wish you success with Sutent.

 

Dutch

sierra28
Posts: 70
Joined: May 2014

Hi Dutch,

Thanks for answering.  I guess the treatment for this cancer is on going.  They did not mention any radiation or surgery for me.  I guess my biggest fear is having problems with my one kidney or my liver

I hope I can handle the treatment.

 

Thanks, Sierra.

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

 

Sierra;

While I was on Sutent, I didn't have any liver or kidney problems.  I don't recall which blood reading prevented me from going to a full dose of Sutent.  It might have been my kidney.  Even if it was a kidney problem, it went away once we backed off on the doseage a little.

Dutch

sierra28
Posts: 70
Joined: May 2014

Dutch,

I guess that the treatment for renal cancer is ongoing.  I never hear anyone say that they are in remisssion and stopped treatment.  I am a little worried about the side effects..  I was lucky with my anal cancer.  I had hardly any side effects.  They sure make them sound scarely.

Right now they are talking 4 weeks on and 2 weeks off and I think 50 mg dose if I can handle it.  Is there any time during these treatments that you feel good?  Do you seem to be sick at the same time during each round of treatments? Sorry to bother you with so many questions, but I am the type of person that wants to know about anything that can happen.

Thanks, Sierra

 

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

If you want to know about anything that can happen, you've got work to do. You better start reading and learning. All this gets discussed ad nauseum. So it is all there in first person print. I don't think you really expect people to repeat everything they have already said when it is your job to do the research. Questions about the process are one thing but it may be unreasonable to ask everyone to rehash their experience ..again..Especially since peoples response varies individually and may not apply to you. I say do what needs to be done and deal with SE's as they develope. Questions about your response are more addressable and pertinent. Sutent and every other drug already include an encyclopedia of SE's, benefits, risks and chemistry that covers just about everything that has been documented. If you are more worried about the side effects than the disease, refuse treatment.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

If Ive learned one thing from this site its that RCC and its treatment varies from one person to another. I have been on 6 different drugs all with different side effects and different degrees of success. You roll the dice and count the score and then roll 'em again. Good luck.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Lesson One:

You cant know everything

Lesson two: Dont fret it, just do it and be honest with yourself and your doc

I have had no experience with cancer as bad as the fear of the cancer

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

I agree, there's no way to know how you'll do while being treated with Sutent.  Plenty of people have done fine.  You should be closely monitored as you start this drug and adjust as your body's reaction to the drug becomes known.  I'd expect my oncologist to help me through any problems that I have with the powerful drugs we take because of our cancer.  Try not to worry.  Any untolerable side effects should pass with either an adjustment to how you take the Sutent or (as would happen infrequently) you switch drugs.  Switching drugs would seem to happen most often because the drug loses its effect on the cancer.

My experience with Sutent was good -- except that it lost its effectiveness.  I hope it's good for you. 

Dutch

Tim Wisneski's picture
Tim Wisneski
Posts: 17
Joined: Jan 2016

Ive been taking 50mg per day after breakfast each morning, knock on wood I dont really feel anything to speak of. One day I had a dizzy spell, likley from blood pressure but other than that? Nothing...

There are lesser dosage capsules, my doctor recomended I take 4 ea 12.5 mg capsules per day just in case I had bad side effects we could just easily lower the dosage to 3 or 2 capsules. That beets buying the 50mg capsules and being stuck with them. 

Be strong, I know its scary but its just something we need to deal with. 

Tim

sierra28
Posts: 70
Joined: May 2014

Tim.

Thanks for the reply.  Still waiting for Ins. approval which should come any day.  I like that idea about the 12.5 dose because I was worried if I would be able to take the full dose.  I will mention that to my dr.

Sierra

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