SUTENT - what are the effects of long term use?

Hi,

I have been reading this board now for over a year and would like to thank you all for sharing your stories.  My husband was originally diagnosed with RCC with mets to the adrenal glands in May, 2003.  The doctors had removed his left kidney, both adrenal glands and a few lymph nodes.  They said they got it all and would keep a check for reoccurence through testing.  The first annual check-up the doctor ask how he was feeling and he said he was good.  The doctor said great, come back in a year.  No PET scans, CAT scans or x-rays until May 2007 when my husband went back and said he had been having discomfort in his left side where his kidney use to be.  After doing a C-scan, the bad news came that it had rturned and had spread to the lungs and several lymph nodes.  We were very confused why testing was not performed between 2003 through 2007 (as we were new to this cancer and was told it was different than others).  The urologist set up an appointment for the first time with an oncologist and that's when the SUTENT was introduced to us.  My husband has now been on it since June of 2007 and after trying several ways to take it he found that the 2 weeks on, one week off was the most tolerable for him.  The cancer has increased very little but has had no shrinkage.  I would like to know if there are others out there that have taken it for a long time with no shrinkage?  He is starting to show signs of fitigue moreso than ever and his hemoglobins and red blood count  are very low.  They are trying to get the counts up but said they may have to do a transfussion.  I am so sorry for being so long winded, but I wanted to first share with you all how he got to this point. 

If there are others that has been on SUTENT for a long time (and still taking it), I would love to hear how you feel.  I welcome any knowledge of the blood counts also.

 Thanks and god bless,

Sandi

My husband has been on Sutent since January 2007 at various dosages. 3 months ago he started to take 37.5 mg 2 weeks on, 1 week off because the hand foot syndrome and mouth sores were getting worse. His tumors have been stable since April 2008. He has his 3 month CT scan on Tuesday. We hope RAD001 is approved soon since it appears his succes with Sutent is waning.

Good luck.

Sharencec

Sandy, it's quite appalling they didn't do regular twice yearly CT scans to spot any recurrance the first posible moment - I THINK things are a bit more wideawak now, but it's still scary to think that it happened at all. Maybe, however, they didn't do CT scans for stage III because they knew there was precious little they could offer by way of therapy if the RCC did come back. Now, of course, with Sutent etc, there is a lot they can do.

So far as I know, the maximum time - so far! - for 'living on Sutent' is one of Dr Figlin's patients whom he says is still going strong after four years. I don't think that Sutent has yet been 'maxed out' so to speak, but I may be wrong??

Sharon, wouldn't any of the other drugs be a possibility, if Sutent is wearing off? Nexavar (sorafenib) is also a VEGF inhibitor, and then Torisel, like Rad/Evarolimus, are both M-tor inhibitors, so maybe Torisel wouldbe good too? Then there is  Avastin as well, which I don't know anything about!

Finally, I do recommend checking out the invaluable kidney-onc mailing list if you are not on it already - lots of us are. You can join on

http://cancerguide.org/kofaq/

There's a huge pool of expertise and experience there, and I thoroughly recommend it. You ge a lot of emails - be warned! You may want a dedicated email addy for it!

All the best, Julie 

Julie,

Thank you for your reply.  My husband has temporarily been taken off SUTENT due to excess bleeding in the intestinal track (rectal).  They hospitalized him on Friday night and found that he had a hemroid that ruptured.  He also had low hemoglobin count so they gave him a transfussion (2 pints).  They found a spot in his stomach and we are currently awaiting the results from the lab.  They were goint to release him today (11/3/08), but changed their minds when they found that his potassium is very low.  If they can get the potassium up, they may let hin come home tomorrow.  He wants to start back on the SUTENT as soon as possible because it has help control progression of the cancer.  The oncologist is trying to avoid Torrisel because my husband is also a diabetic and the drug is harsh for diabetics.  It is not ruled out, just trying to avoid it if sutent continues to work.

I'm sure everyone facing this horrible cancer is just as scared as I, but as we all know, we have to remain positive.  I really appreciate your responce to this message and will check out the "kidney-onc" site.

You are a great help to those of us that just do not understand this type of cancer.  I am still trying to learn about the blood counts and what it means when they are too low.

God Bless and take care,

Sandi

Sharencec,

Thank you for your reply.  It is good to hear that the sutent has worked for your husband this long.  I hope you all get good results from his upcoming scan.

 Good luck and god bless,

Sandi

Sandi - hope the docs sort out the blood situation, and get your husband back on Sutent ASAP.

All the very best - Julie.

My husband, Big John, has been on Sutent for almost two years and it has kept his renal cancer at bay since his first treatment.  The tumors in his longs have all but disappeared, with only one spot (out of 9) remaining, though microscopic in size.  His oncologist changed his treatment regimen to two days on and one day off and it cut back on side effects tremendously.  Today he is off playing golf with some of his buds.

He gets a CT scan every 3 months and is vigilant about his exercise, diet, and medication.  I could not be prouder of him.  Keep the faith and know that there is hope.    Dianna

It's good to hear from those that have had good results from the sutent.  I hope all continues with success.  My husband gets his 3 month PET scan next week and we are hoping the sutent is still working for him, as he has had problems lately.  They still don't know what caused the bleeding he was having.  First they said hemroid, then a tare in the wall of intestines.  They said they could not see anything that would have caused it.  The good news is it quit bleeding.  He received 2 pints of blood to try to boost his hemoglobins.  It did raise his count by 1.3, but 2 days later it dropped .3.  They are still giving him procrit once a week to help.  Other than all of what I mentioned, he is feeling great.  He started back on the sutent today. 

Thank you all for your replies.  It sure helps when you can share information to help educate others.

Take care and God bless you and your love ones. 

Sandi (aka Jeff's girl)

Sandi -

 It is disappointing to hear your story.  I would encourage you, if you feel comfortable doing it, to ask the urologist why no tests were routinely run after the nephrectomy.  That is a legitimate Q, does not have to be confrontational, & at worst may help the urologist think about how future patients should be treated (this, from the father of a urologist).  There were, at a minimum, trials available if the lesions had been discovered earlier, & that may, I emphasize may, have helped.  I say this w/ some regret, because my wife's tumor was removed in January, 2005, & based on the urologist's recommendation, she had CT scans every 6 months for two years, after which, he let her choose, 6 months or wait a year?  Because of the scanxiety she went through, I encouraged her to wait a year, at which point the mets were found in her lungs & liver.  Maybe we would have found them 6 months earlier, maybe that would have helped in the long run, maybe , maybe , maybe ........

Stgooch,

I am sorry to hear about you and your wifes unfortunate news of the spreading.  There will always be that huge 2 letter word "if".  If only I was as educated about this form of cancer in 2002 as I am now, then who knows what my husband could be facing now.  I could go on and on with if's, but we have to stop or we could drive ourselfs crazy.  Maybe things woud be different for your wife and for my husband "if" we all had only known.  Hard lessons learned but the important thing is to share with others to help them avoid the same experience we have had. 

 I did ask the doctor what needed to be done to keep an eye on my husbands cancer, once he had the kidney and adrenal glands removed, and his reply was "we are 99% sure we got it all.  This is different than other cancers and we will perform blood test and chest x-rays".  If I had only know then what I know now.  This doctor is still treating others with RCC and requires them to get a c-scan every 3 to 6 months (or annually).  I guess my husband slipped through the cracks somehow.  He does not see my husband any longer because, I think he knows, there is nothing more he can do for him.  The oncologist and my husbands family medical doctor treats him for everything at this time. 

Is your wife on SUTENT?  If so, how long? 

God bless and take care!

Sandi