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Newly diagnosed stage 4 clear cell renal cell carcinoma

Joedaddy
Posts: 3
Joined: Aug 2017

I was diagnosed on august 9 with kidney cancer and had my left kidney removed on August 31st. Kidney had an 11cm mass and the path report showed  ccRCC???  I am looking at treatments. I have lesions on my liver and in my lungs. So stage 4, such a shock never had any symptoms but a recent cough. 

my Oncologist has recommended Avastin and Interferon combined or Votrient.  Have any of you used these meds? I would like to know about your experiences with these 

drugs and your side effects.  Thank you

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

Four and a half years ago I went through surgery.  I was also found to be stage 4, just as you are.  The mass on my kidney was pretty large as well.  At the time of my surgery, the cancer had spread to the adrenal gland and 15 or so lymph nodes.  About 18 months later, a new spot showed up in my chest.  A year after that, another spot in my chest.

I've been on three different drugs and have gone through a round of targeted radiation.  I was first on Everolimus via a test trial, then Sutent on the first recurrence and then Votrient when the second recurrence showed up.  The first recurrence was effectively treated with the radiation and Sutent.  When the second came, we went to Votrient -- which has been very effective for me.  I am on a reduced doseage and find the side effects to be manageable.

To your question about the meds you are choosinig from, you have to listen carefully to your oncologist.  I can only offer stories about what has worked for me.  Personally, I would ask a lot of questions about Interferon, as I understand that stuff is very tough to handle.  Maybe you want a second opinion.  I did that when the first recurrence popped up.  My regular oncologist had no problem with me asking for a second opinion.

Best wishes to you.

Dutch

 

 

Joedaddy
Posts: 3
Joined: Aug 2017

Thanks Dutch.  My oncologist called this morning and said he would like to start with Votrient 1st. He sent in for ins auth this morning also.  I'm glad you are doing Good.

enjoy life, my friend!!

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Are with you

You must have got a terrible shock

have you got a surgery date yet

 

I really really don't understand who some people have no symptom and others  many symptoms 

 

did you have any signs that were there in hindsight

did they recommend one system over the other

 

annie

 

Joedaddy
Posts: 3
Joined: Aug 2017

I had no symptoms ar signs before a scan showed the mass. Labs done yearly were normal and I was just working on my Diabetes control and longtime a-fib

Deanie0916
Posts: 332
Joined: Nov 2016

I was on Avastin for a clincial trial when I was being treated for breast cancer many years ago. It caused me to have nosebleeds and my voice changed, I sounded like Minnie Mouse. There is some research that it can cause heart issues, that is why I was taken off of the trial before it was my time to end it. You are in my thoughts and prayers. 

rd9528's picture
rd9528
Posts: 1
Joined: Nov 2017

I was dianosed with stage 4 clear cell renal cell carcinoma last week. This is a reoccurrance from kidney cancer I had in 2014 and has metastasized to a lymph node next to my right lung. My Oncologist at MD Anderson has recommended Votrient. The cost for this drug is about 12k for 120 pills.  Do any of you know of how we can get assistance with this cost?  At 71, I think I'd rather stick it out and take my chances, rather than burden my family with that kind of debt. Any suggestions for cost assistance???

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

You can do it!

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Check this out. Best to you. 

 

https://www.hcp.novartis.com/products/votrient/advanced-renal-cell-carcinoma/access/

Time2luv
Posts: 49
Joined: Dec 2009

Was on Votrient for approx 21/2 yrs. Stopped working so went on Opdivo infusions but it isn't working either. Will start something different now. Diagnosed I. 2005, stage 4 in 2010. Lost right kidney and 2/3 left kidney. Was also in pancreas.  Currently in both lungs, bones, liver and possibly head. (Waiting on biopsy)

Votrient was tolerable once lowered dosage. Watch BP, your hair will turn white. No sharing bodily fluids so no eating or drinking after you. No sex without protection. I had very sudden nausea so always kept vomit bags in purse, car, etc. Also had VERY sudden diarrhea so always wore depends when leaving home and kept change of clothes handy. Was very embarrassing sometimes.

 

 

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

ENUFFFF!! 

Sending you healing hugs with HOPE and Love Time2luv!!!

Here for you ...all...the.. way!

Jan, 

DaBabysDaddy's picture
DaBabysDaddy
Posts: 4
Joined: Nov 2017

i just joined the conversation. I just posted my issue. RCC has been found in my pancreas as well. Have they said anything special concerning the pancreas? Have you had any issues surrounding your pancreas issue?

 

Manufred's picture
Manufred
Posts: 241
Joined: May 2017

My mRCC first showed up in the pancreas, 30 months after my radical nephrectomy.  One of the doctors said this is not uncommon place for mRCC mets to show up, although my urologist thought it was uncommon.  Perhaps they need to get their data together a bit more.  When  they then had a better look I also had a few more mets generally throughout my abdomen.

I had highly elevated lipase levels in my blood, but I was not aware of having any symptoms at the time. 

After 2and a half years on the immunotherapy trial everything is back to normal and no signs of tumours, not in my pancreas or anywhere else.

Rooster@1
Posts: 9
Joined: Dec 2017

wondering which drug was your immunotherapy or was it T cell extraction and replacement ?

Manufred's picture
Manufred
Posts: 241
Joined: May 2017

Rooster,

Mine was combination Ipilimumab with Nivolumab, for the first three months, then fortnightly Nivolumab ever since.  I love it.  Checkmate 214 is the name of the trial.

Regards,

Fred

jeffrey shank's picture
jeffrey shank
Posts: 3
Joined: Nov 2017

sorry to hear what you are going through. was diagnosed with stage 4 18 months ago. been on votrient about a year. majpr side effects are it turned all my hair white, ALWAYS tired. nauseau and diarrhea were very bad at times and no advance notice just as Time2luv stated but otherwise it appears to be working for me so far

Best of luck to you and will be in my prayers

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

So sorry to hear this. I hope your treatment is going well!!!

Manufred's picture
Manufred
Posts: 241
Joined: May 2017

To both of you with ccRCC.  I just finished writing a post to Kankamuso about the Checkmate 214 trial) involving Ipilimumab (Yerrov) and Nivolumab (Opdivo) - see parallel postings.  There are also quite a few comments about this in the various other postings on this site as well.

Does not work for everyone but sure worked for me.  I would get that looked into as it may offer you the best outcome, with a bit of luck and good Karma.

Fred

ferragano2
Posts: 3
Joined: Nov 2017

I have the same.  Diagnosed in September 2015.  The cancer metastasized onto my vertebrae.  I am being treated at Memorial Sloan Kettering by Dr. Motzer, who is well known for treating kidney cancer.  He put me on a trial consisting of Atezolizumab and Avastin.  He said that Avastin is the best drug they have.  It has one big side effect that cancer drugs have. It raises your blood pressure and you have to take blood pressure medication.  After one year, one of my tumors started growing so he took me off of the trial in October 2017 and put me on Cabometyx.

Manufred's picture
Manufred
Posts: 241
Joined: May 2017

Avastin may have been the best drug available for mRCC in 2004, but I doubt many would say that now.

Angiosuppressors such as Avastin and Cabometyx seek to slow tumour growth by inhibiting blood vessel formation (which will happen not just in tumours but everywherre in your body, hence the side effects).  This may prolong life but ultimately does not offer a cure.

Immunotherapy drugs allow your own immune system to attack tumours directly and sometimes remove them altogether, as has been my experience to date.  This may lead to total remission.  They don't necessarily work for everyone and who knows for how long they are effective  (they are quite new) but the prospect of no tumours is much preferable to the prospect of slowing tumour growth for a while but eventually succumbing.

I may be starting to sound like an advocate for this type of treatment, but I am frustrated that people even today are not always being given this option when the prospects are so much better, and the side effects in many cases much less, than for the older style treatments.

Hope it works out well for you either way.

 

 

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Do you happen to know if most insurance covers immunotherapies? I may be looking into this, depending on my dx from a recent biopsy. Thx in advance.

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