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Sutent has run it's course

Bellweather
Posts: 100
Joined: Jun 2013

Two and half years of good Sutent results may be coming to an end.  Today's scan shows lung met growing fom 7mm to 10.2 mm in six months.  Several new bilateral 4.5mm noldules although I suspect they are the same ones that were reduced by the Sutent in the past and noted as " too small to measure ".  You would think the radiologist would look a little further back, oh well.  I am thankful for the Sutent, will see what my doctor has in store for me at our Tuesday appointment.   I assume we are looking at Votrient or Nivolumab next?

I have been contemplating LTD for a while and kept telling myself if it showed growth I would start the process.  Now I am unsure again.  Many of you have been very clear that it was one of the best decisions you have made.  Sure makes sense to me but my doctor seems to think working is good for me, I do respect her opinion.  Decisions,  decisions.   I also respect the opinions of everyone here so if you feel the urge, let me have your opinion.

Sorry for rambling on and on, my head is spinning somewhat.  Odd, considering we all know its coming at some point.  I am going to go tinker with my boat to get it ready for some fishing.  Living in the moment is under rated, trying to get better at it!

Thanks for listening, 

Bell

Dutch1's picture
Dutch1
Posts: 148
Joined: Mar 2014

Bell;

I was on Sutent for about a year.  First, some progress on reducing met sizes.  Then, a new one appeared.  At that point, we changed to Votrient.  The logic was that the cancer was showing a sign that Sutent was losing its effectiveness.  That's my progression of drugs.  Still on Votrient.

As to claiming disability, that is a personal decision.  I never returned to work after my surgery.  I was 62 at the time and in sight of retirement.  My recovery was fairly long and I was consulting at the time ... so, a long-term absence wouldn't work.  No one to cover for me.  Easiest and best for me to retire.  I gained disability status without much trouble.  Your doc suggests that work is good for you.  Once I got over the initial healing and the weariness of those first months (I have never before or since slept as much as I did after surgery), I have tried to be fairly active.  So, I won't disagree about the benefits of leading a more active life.

I would think that you'll kind of know if work is still a good thing for you.  Good luck with your decision. 

 

Dutch

MattInVa
Posts: 50
Joined: Sep 2015

I had my 3rd progession scan last week. On votrient 6 mos. Intial shrinkage with first 2 scans but the latest was stable with no change. Another spot has developed near my nephorectomy site, not sure if its cancer but a lymph node about the size of a blueberry.

I may be nearing the end of my Votrient run, I was hoping to drag it out longer than 8 or 9 mos, but no decisions until I actually get progression.

I am on disability now, took all of a couple of weeks to approve, not just because my job was physically demanding but because I want to pursue other hobbies, activities and travel while I still can and I was finacially stable beforehand. Oh and I am 46.

Insurance has covered far more than I ever expected. I feared I would have to dip into my retirement for the medical bills.

 

Social security is very fast at determining your eligibility with RCC Stage IV.

Do what is best for you, but I agree stay busy doing something you enjoy.

Eliezer2
Posts: 85
Joined: Aug 2012

opdivo after it has so far been VERY effective

Bellweather
Posts: 100
Joined: Jun 2013

Thank you all for your input, much appreciated.   My doctor wants to stay on similar meds as Sutent as it worked for well over 2 yrs.  Votrient was also an option but she wants to go with Afinator first.  If it works similar to Sutent we will surf that wave as far as it will take us then go to Votrient.  Her theory is to keep trying like meds until they do not produce, then switch to a new family of meds such as Opdivo/Nivolumab. 

I am going to continue working and play it by ear (or lung in this case) and let chips fall where they may.  I will use the LTD card when I feel it is time, as my Doctor told me to give her the claim form and she will have it on file when I am ready.  That in itself was comforting as she "gets it" and is very compassionate.   I will be 53 in July and a 5 year cancer survivor in August.  I have not come close to battling what some of you trail blazers have dealt with so I am greatful to be at 1cm on the largest nodule.  There is alot of hope and options to fight this battle moving forward.

I really do appreciate all of you regular CSN posters that keep the site active.  I know it is a life raft for all the newbies as well as all of us part timers.  I hope and pray that everyone fighting this beast find comfort and fellowship in these informative and sometimes comical posts.  ( hope Fox and others are feeling well enough to post some new jokes)

Will revert with Afinator results soonest,

Bell

 

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

looked at it differently. I disliked votrient side effects so much I did not want to try another TKI (tyrosine kinase inhibitor) if a different option was available. And even though I had failed the nivolumab trial (only technically by their study protocol) I desparately wanted to try it again. Quality of life became a significant issue. Like you, @ 5 years what we consider in our plan of care can be so much very different from the plan newbies are subject to. At this stage of my health, all I ask is to be functional and painless as long as possible. Good luck to both of us.

mrou50
Posts: 389
Joined: Mar 2013

Sorry it stopped working, but you did get a good run from Sutent so now on to the next stay positive.

 

Mark

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