Help Please

My husband was diagnosed in September 07 and had a left radical nephrectomy, He already had mets to his lungs and was put onto Sutent 50mg which he managed to tolerate for about 5 cycles he was then put on 37.5mg because his body just couldn't tolerate the higher dose. He has had 2 scan in this time both showed some growth in his lung mets but thank goodness nothing else. The last scan was only last week and we are both very upset and distressed at the result. I keep reading on the message board of people on this medication having reduction in their mets or at the very least no growth at all, so you can understand our frustration.

Our oncologist doesn't think the drug is working and wants my husband to see another specialist to see if maybe he should go on either Nexavar or Avastin. Of course we are worried to try something new and learn a whole lot of new side effects.

Is there anyone out there either in the same boat as us or on either of these drugs? Can you give me some insight into the side effects to any of these? Is anyone out there on something totally different that is working for them?

I look forward to hearing from anyone who can help

thanks

Nicki

good morning Nicki,

first off let me say how sorry I am to hear about your husband.  My husband also has rcc with mets to lungs,mediastinum, and now retroperetoneal.  He was on Nexavar for almost 8 months. It certainly helped him for a while with no new growth, very slight reduction. When the nexavar stopped working he went on Sutent for 3 months. Sutent did nothing for him. After his scan, we found out that everything had nearly tripled in size, and they found the lymph nodes in the retroperetoneum.  Now he is on Torisel. He has had 9 treatments, and today will be #10, then Friday he goes for a CT scan of chest, abdomen, and pelvic.  We are hoping it works. I will let you know. Nexavar worked the best but side effects were the worse. Sutent side effects were tolerable, but not great. He has the least side effects from the Torisel IV. However, after the 4th treatment he developed bi-lateral pneumonia within 1 day, spent about a week in the hospital, etc. His skin rash is quite bad, and the mouth sores were bad until they subscribed magic mouth wash. It is expensive, but worth it.  Our experience has been that the Torisel, 1 time per week, is lots easier than the pills everyday. I have lots of information to share if you want to email me.  Good luck to you and your husband.  Laura

Dear Nicki

That must be so frustrating. But I wonder if it's a case that Sutent has been slowing the rate of growth and spread - ie, without it things might have been worse?

 I do know I've seen postings on this site that say similar to your husband's situation, that Sutent didn't 'take' but that other drugs did.

 More and more is coming out of the research pipeline - we just have to hang on in there.

 All the very best to you - and to all of us!

Julie

Dear Laura,

 Thank you for your reply message. Seems as though we are in a very similar boat. Please keep me informed about your husbands scans and i do hope that all will be as you wish.

I am interested in the information you have please let me know how i can get this from you.

I live in Australia so i suspect that there are lots of drugs and supports that you have (i am assuming you are in the States) that i do not have here. We are just a little behind the times here.

I look forward to hearing from you

Kind regards

Nicki

Dear Nicki

I found a very good article which runs through all the various treatments available, or coming along, for advanced KC. It's on the site for the American Kidney Cancer Association - www.kidneycancer.org and the actual page is

http://www.kidneycancer.org/index.cfm?pageID=40

Although individual doctors may not be totally up to speed on the latest therapies emergening - although I would be surprised (I hope!) if they weren't, one upside of having a global pharmaceutical industry is that it's just that - ie, global.

 So , I would think, providing a drug has been OK'ed for use by a national government, it would be available to people in that country? (Whether one gets them free is another issue!!!!).

But I think I'm right in saying that as well as Sutent (sunitinib), there is currently Nexavar (sorafenib) (which I believe is a variant of Sutent, would that be right?), which, again I believe, use similar approaches and metabolic pathways to attack the cancer.

 Then there is Torisel, which I believe uses a different metabolic pathway (and I know some people here are already on this.)

 There is also Avastin (which is also used for other forms of cancer, such as colon). It's also called Bevacizumab (which may be its chemical name).

There is also one in clinical trial, called Trovax, which is a vaccine which delivers a cancer-specific antigen to the tumours to kick start your immune system into fighting them (finally!!!!) (it's just exasperating that the beasties fool our immune system to thinking they are 'one of us' and so 'harmless'....!)

Anyway, those are the ones I know about so far. I'm not sure what else may be around (or coming around.)

But you may well know of all these already.

All the very best to you. Julie

Dear Nicki,

I was diagnosed with kidney cancer in May 06 and had my left kidney and adrenal gland removed. In Nov 06, I was placed on Sutent 50 mg which worked for me for about 12 cycles (72 weeks). The side effects werent too bad for me. It seems as if everyone tolerates them differently. When the Sutent stopped working I was placed on Avastin which had no side effects at all but did not work for me as the tumors I had left grew substantially. Then I was placed on Torisel about a month and a half ago. The sores in my mouth got so bad I couldnt eat and lost about 20 lbs or so. I had a bad rash on my arms and head. After being off of it now for a few weeks the sores have gone away and yesterday I started a 15 mg dose waiting to see how I react to the new dose.

The thing I have experienced myself and read on different msg boards is that it seems like everyone pretty much experiences the same side effects just to varying degrees. It is sort of wait and see how your body reacts to the medicine. I havent taken Nexavar yet but the side effects for the Avastin for me were nothing. That is what I was told by my oncologist and by the staff giving the treatments.

Hope whatever the dr decides to do works for you with the least side effects to deal with.

Terry

On 7/9/2008 nicki2911 wrote:

My husband was diagnosed in September 07 and had a left radical nephrectomy, He already had mets to his lungs and was put onto Sutent 50mg which he managed to tolerate for about 5 cycles he was then put on 37.5mg because his body just couldn't tolerate the higher dose. He has had 2 scan in this time both showed some growth in his lung mets but thank goodness nothing else. The last scan was only last week and we are both very upset and distressed at the result. I keep reading on the message board of people on this medication having reduction in their mets or at the very least no growth at all, so you can understand our frustration.

Our oncologist doesn't think the drug is working and wants my husband to see another specialist to see if maybe he should go on either Nexavar or Avastin. Of course we are worried to try something new and learn a whole lot of new side effects.

Is there anyone out there either in the same boat as us or on either of these drugs? Can you give me some insight into the side effects to any of these? Is anyone out there on something totally different that is working for them?

I look forward to hearing from anyone who can help

thanks

Nicki

If your husband is not under the care of an oncologist who specializes in treateing kidney cancer than certainly a consultation is in order.

On 7/9/2008 nicki2911 wrote:

My husband was diagnosed in September 07 and had a left radical nephrectomy, He already had mets to his lungs and was put onto Sutent 50mg which he managed to tolerate for about 5 cycles he was then put on 37.5mg because his body just couldn't tolerate the higher dose. He has had 2 scan in this time both showed some growth in his lung mets but thank goodness nothing else. The last scan was only last week and we are both very upset and distressed at the result. I keep reading on the message board of people on this medication having reduction in their mets or at the very least no growth at all, so you can understand our frustration.

Our oncologist doesn't think the drug is working and wants my husband to see another specialist to see if maybe he should go on either Nexavar or Avastin. Of course we are worried to try something new and learn a whole lot of new side effects.

Is there anyone out there either in the same boat as us or on either of these drugs? Can you give me some insight into the side effects to any of these? Is anyone out there on something totally different that is working for them?

I look forward to hearing from anyone who can help

thanks

Nicki

Nicki, I am so sorry you are going through thus horrific experience. My son was diagnosed a year ago and we are fighting the same problem, had extensive kidney cancer ie removal of right kidney, adrenal gland, even appendix and it had metastasized to lungs and liver and vena cava.It was felt perhaps he wouldnt survive the surgery.

.He chose to start with Interleukin IL2 an Immunology treatment, then after that treatment was put on Nexavar, seemed to work then growth started again in liver and lungs, has been on Sutent, Sutent not nearly so many side effects as Nexavar, so one never  knows.

Recent CT Scan shows lung nodules better, liver tumors growing.So it's another new med for him.  We dont know what kind yet, just found  this info this week. We do know he has had great care, we also know apparently the drugs may work on the lung metastasis and not on the liver or vice versa. I suspect all people react in different manners.

It is one year now, he feels great but liver tumors are growing as I said, tho lung tumors have reduced in size so it's onward for further treatments..  this cancer very sneaky ie  healthy young man, 49, sudden bleeding in urine, no problems before except occasional aching in back. We as a family are all working together, plus son has good attitude which is important. He is almost as strong now as he was before diagnosis but we dont know what future will bring.  Nothing and no one does, not even the doctors but we are keeping the faith and trusting in some good doctors. Son has researched with UCSF, and many other places......we must face that some drugs work on certain people in one way, in others another way. My  thoughts & prayers are with you. Feel free to write if you wish but especially Take care of yourself, Stay Strong and Keep the Faith!  My very best wishes. Barbara

Hey Terry,

Thank you for your response, the support we get from this website is outstanding. We have an appointment next week with a new oncologist so here's hoping for some better news.

Stay strong

regards

Nicki

On 7/10/2008 JulieUK wrote:

Dear Nicki

I found a very good article which runs through all the various treatments available, or coming along, for advanced KC. It's on the site for the American Kidney Cancer Association - www.kidneycancer.org and the actual page is

http://www.kidneycancer.org/index.cfm?pageID=40

Although individual doctors may not be totally up to speed on the latest therapies emergening - although I would be surprised (I hope!) if they weren't, one upside of having a global pharmaceutical industry is that it's just that - ie, global.

 So , I would think, providing a drug has been OK'ed for use by a national government, it would be available to people in that country? (Whether one gets them free is another issue!!!!).

 

But I think I'm right in saying that as well as Sutent (sunitinib), there is currently Nexavar (sorafenib) (which I believe is a variant of Sutent, would that be right?), which, again I believe, use similar approaches and metabolic pathways to attack the cancer.

 Then there is Torisel, which I believe uses a different metabolic pathway (and I know some people here are already on this.)

 There is also Avastin (which is also used for other forms of cancer, such as colon). It's also called Bevacizumab (which may be its chemical name).

There is also one in clinical trial, called Trovax, which is a vaccine which delivers a cancer-specific antigen to the tumours to kick start your immune system into fighting them (finally!!!!) (it's just exasperating that the beasties fool our immune system to thinking they are 'one of us' and so 'harmless'....!)

Anyway, those are the ones I know about so far. I'm not sure what else may be around (or coming around.)

 

But you may well know of all these already.

 

All the very best to you. Julie

Hi Julie

Thank you for your response, the support that we get from this website is outstanding. I will check out all the info

We go to a new oncologist next week here is hoping for some more positive news.

stay strong

Nicki