Greetings

decula

Hi friends. 59 year old male. Last year (2017), had a couple of weird fainting spells. August of 2017 pee'd a 50 cent piece sized blood clot. Immediately went to GP and he set up appointment with urologist. Scope of bladder was clean - set up for CT. CT showed 10 cm tumor on right kidney. Operated on Halloween 2017, complete right nephrectomy. Told the tumor was still fully encapsulated - next check would be 6 months and all was well.  Follow up chest xray indicated 2 nodes in the right lung. Follow up PET scan indicated the 2 nodes they were concerned about did not "light up", but 2 of my lymph nodes in right lung were "hot".  Biopsy on the upper lymph node indicates mRCC. Well, poot.  Visit with Oncologist with the dreaded words "there is no cure", but you are a good candidate for targeted therapy that will extend your life, we will be using Votrient. We will start you at 200mg the first week and ramp it up an additional 200mg each week until we hit 800mg daily.   I'm now on that 800mg first week.  Lost quite a bit of taste, mouth sores that have slowly receeded; stomache gurgling constantly and bloating, gas; fatigue; and a few days ago, blood pressure hit 177/97.  Doc doubled my lisinopril (for blood pressure)  from 20mg to 40mg and off Votrient  for 2 days, things are starting to settle down again. I've read where some folks were started immediately on 800mg - seems to be a bit extreme to me. 

I want to thank you all for your posts. The feeling of sharing this ride of a lifetime is helping me cope.  Those of you that have been on Votrient for 3 or even 5 years have given me hope that was sucked out of me being told I was stage 4. I truely am sorry that you or your loved one has this disease and you are here because of that. I pray for you all.

 

John and wife from Oklahoma

Retcenturion

Hey john

I can't give any advice on your medical protocol, there are others here who can. I can offer support for your daily fight. And send positive thoughts to you and your loved ones. Good luck.

Manufred

Other Options

Although we are moving forward at a fair pace in the treatment of mRCC, today's attitudes will still be seen as backward at some time in the future.

Angio-supression does not cure cancer, it inhibits its growth (for as long as it can - cancer is clever).

I was lucky to be given immunotherapy, and even more  lucky that it worked for me.  I hope that if the Votrient turns out to be an as-yet-unmarked dead end for you that Nivo will prove a better alternative.

Check my profile for full details of my treatment.

Best wishes,

Fred

cubsfan9

Welcome

Good Morning, John (and wife!)

It sounds like you have had quite a journey already.  We were told early on to think of RCC as a chronic disease, like you would think of diabetes.  A cure for my husband not likely, but it could be kept under control with meds.  So far that has been true for us.  The side effects of the drugs can e tough, but mostly manageable.  This is an exciting time as there are a lot of new treatments being used and more in the pipeline.  There is another discussion board that you might find helpful- smartpatients.com.  There are many who can offer insights about treatments, help in locating an RCC specialist, and ways to deal with the side effects.

 

decula

Retcenturion said:

Hey john

I can't give any advice on your medical protocol, there are others here who can. I can offer support for your daily fight. And send positive thoughts to you and your loved ones. Good luck.

Hi, Retcenturion

  Thanks for being here, Retcenturion.  So many good people here, so many that have challenges. Good luck to you, too.

 

decula

Thank you, Manufred.

"today's attitudes will still be seen as backward at some time in the future."    My parents bought a medical book from 1903 that I went through as a kid. The treatment for cancer then was dosing with lead arsenate!   I couldn't agree more with your thoughts about where we are. 

Thank you for the pointer to your profile, Fred. I'll go check it out. Options are a blessing.

 

 

decula

Thanks cubsfan9

Nice to meet you, and thank you for the response. I'll check out smartpatient today! I'm curious how many other are able to tackle going to work through this process.  So far, I've manged ok, best to focus on things I can do.  Thank you and my prayers to you and hubby. 

 

a_oaklee

Welcome, and sorry you are

Welcome, and sorry you are here.  Please do check out smart patients.  I know there have been people there who had multiple small mets in a lung that were successfully zapped with radiation.  I also wonder when you started Votrient and how quickly they will do your next scan.  My husband was started on 800 of Votrient.  It was rough with side effects.  He had a repeat scan at 2 months.  I hope you do well, but I do want to say that if you need to change medicines not to worry.  Every change my husband has had to make has been easier on him with less side effects.  Things have changed alot in RCC treatment since he got diagnosed stage 4 in 2012.  He enjoys going to work everyday.  There are changes with his strength, stamina.  He is 71 so I think that's okay.  He certainly doesnt think so.  

Manufred

decula said:

Thank you, Manufred.

"today's attitudes will still be seen as backward at some time in the future."    My parents bought a medical book from 1903 that I went through as a kid. The treatment for cancer then was dosing with lead arsenate!   I couldn't agree more with your thoughts about where we are. 

Thank you for the pointer to your profile, Fred. I'll go check it out. Options are a blessing.

 

 

Love Lead

You could not possibly have known that I work in the area of hazardous paint management and actually teach people about the health risks of lead. 

I had not heard about lead arsenate once being a treatment for cancer, so that adds to my store of unbelievable things people have done with lead and other heavy metals in the past. And to some extent continue to do. 

Thanks for broadening my knowledge and good luck,

Fred

decula

a_oaklee said:

Welcome, and sorry you are

Welcome, and sorry you are here.  Please do check out smart patients.  I know there have been people there who had multiple small mets in a lung that were successfully zapped with radiation.  I also wonder when you started Votrient and how quickly they will do your next scan.  My husband was started on 800 of Votrient.  It was rough with side effects.  He had a repeat scan at 2 months.  I hope you do well, but I do want to say that if you need to change medicines not to worry.  Every change my husband has had to make has been easier on him with less side effects.  Things have changed alot in RCC treatment since he got diagnosed stage 4 in 2012.  He enjoys going to work everyday.  There are changes with his strength, stamina.  He is 71 so I think that's okay.  He certainly doesnt think so.  

Hi, a_oaklee

Appologies for the belated reply, A_Oaklee and thank you for message.

I started Votrient 4 weeks ago, however, this week has been typical of this roller coaster and I was pulled off of it for its effect on my liver. At least temporarily. I had just graduated from 600 mg daily to 800 mg.  Blood pressure hit 177/100 and had labs drawn about 5 days later.  I can sympathize with the rough side effects your husband has had - pretty horrible.

I really appreciate the part where you say that he is enjoying going to work every day for over 5 years. Everyone deserves hope - which your message gives - THANK YOU!

 

canadiancruiser

Starting Voltrient

Glad to see people doing ok on Voltriet.. I start  Tuesday and am worried about side effects.. I have it on my spine now and I no thats not good..Thanks for the posts they help..

decula

canadiancruiser said:

Starting Voltrient

Glad to see people doing ok on Voltriet.. I start  Tuesday and am worried about side effects.. I have it on my spine now and I no thats not good..Thanks for the posts they help..

Hi canadiancruiser

 Thank you for the reply!  I'm one of the weird (less than 9%) people that took Votrient and had some of the side effects that were not exactly fun. Liver didn't like it at all. Caught during a weekly blood test.  There are several people here that have done well on Votrient for years.  Wishing you good results.

 

ImNotDeadYet

Started Votrient in Feb

Lasted three days at 800 mg - major GI side effects, so they lowered me to 600. Holding steady there at present, plus a boatload of side effects meds for BP, Thyroid, nausea, and GI. Finally settled on pantoprazole, which has significantly helped with the GI stuff (not just the reflux). I still have issues; that's why I'm up at 5am today and soothing my gut with cannabis before I attempt recrashing. However, it is better than it was. Hair started turning white about 4-6 weeks in and is completely white now. I went out on disability in March, and it's made a world of difference. I'm 53 and will consider myself very fortunate if I make it to retirement age, so I guess I'm retired now. I'm still getting around OK; I'm just careful about staying strategically close to restrooms when I'm out, and I nap a lot. So far, the Votrient is keeping growth from progressing (lungs) after initially showing some shrinkage on the first post-meds scan. My next scan is in a couple weeks, so we'll see where I am at that point. 

I hope you find success with Votrient and are able to tolerate it better with time. The weird taste will likely not go away while you're still taking Votrient. And keep track off what foods work and which don't. And with time, even some of the foods you can/can't tolerate could change. Though, my oncologist at Univ of Colorado Health says they'll be doing a study to try to address the taste issue, so It should be interesting to see if they come up with anything. Feel free to message me if I can be of help with anything. 

Gary