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

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. 

Check this out. Best to you. 

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

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.

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

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

DaBabysDaddy said:

Sounds like mine

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?

 

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.

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.

Manufred said:

Immunotherapy works differently.

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.

 

 

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.