IL-2 treatment

My father - 59 yrs.old - suffered a massive heart attack in March of 2008, but recovered well only to be diagnosed with renal cell carcinoma (Stage 4) in August of 2008. He was operated on in Sept.2008 & had his left kidney removed. At a recent visit to his oncologist for a check-up (2 weeks ago), he found out that the cancer had spread to his lungs & liver. The 2 treatment options that he has been given thus far are to start taking Sutent or receive the IL-2 treatment, which would be administered in the hospital. We really do not have much information to go on at this point in time, such as side effects, effectiveness of the treatments & so forth. I would certainly appreciate any information that could be forwarded to me in this regard because we want to make a well informed decision before deciding which route to take. Thanks so much for your help!

My husband is 57.  He was diagnosed with stage IV renal cell cancer Nov 5.  He was in great health until October when he coughed up a little blood.  A CT of chest showed the top of his kidneys with a large tumor on left one.  I did a lot of searching and it seems that looking at the research on treatment options, Sutent has a much better result with far fewer side effects.  There is some concern with potential cardiac problems so I don't know if your father's history of having the heart attack will alter choice of treatment. One thing I would suggest....I don't know where you are but keep in mind that renal cell cancer is rare...the "average" doctor might see a few cases of it a year...if the doctors you are using are not VERY familiar with kidney/renal cell cancer, you might want to get a second opinion from a kidney cancer specialist...they are out there...  The oncologist here was somewhat unsure of which treatment he should use because my husband has an even more rare sub-type of renal cell (Collecting Duct) but the surgeon who removed my husband's kidney (at Barnes in St. Louis) was adament about Sutent being the best choice for my husband. And since on the day we had our first visit with him he had seen 6 other renal cell cancer patients before us, we felt very confident in his expertise. He will finish his first round of Sutent tomorrow.  He had a delay in starting it due to a metastatic lesion in his cervical spine which was causing severe pain so we had to do radiation therapy to that site.  He also has lesions in his lungs and a questionable spot in his liver that they aren't sure about.  His recovery has been difficult due to the radiation causing his appetite to drop to zero and his weight is down 38# (from a normal weight prior to surgery).  But he has had significant fatigue and only mild GI symptoms from the Sutent...nothing else.  Do what you can to keep him eating as well as possible before his treatments start and hopefully he will do well.  Read some of the other stories on this board from those who have been on Sutent for years....it is encouraging....I hope to keep my husband alive on it until they find something that will actually cure it!  A positive attitude can't hurt either...take care of each other and be thankful for each day....good luck and let us know how it goes.....

Peggy

 

On 1/22/2009 familyis4ever wrote:

My father - 59 yrs.old - suffered a massive heart attack in March of 2008, but recovered well only to be diagnosed with renal cell carcinoma (Stage 4) in August of 2008. He was operated on in Sept.2008 & had his left kidney removed. At a recent visit to his oncologist for a check-up (2 weeks ago), he found out that the cancer had spread to his lungs & liver. The 2 treatment options that he has been given thus far are to start taking Sutent or receive the IL-2 treatment, which would be administered in the hospital. We really do not have much information to go on at this point in time, such as side effects, effectiveness of the treatments & so forth. I would certainly appreciate any information that could be forwarded to me in this regard because we want to make a well informed decision before deciding which route to take. Thanks so much for your help!

Hello:

I have gone through both high dose IL-2 and Sutent. I am currently on Sutent. For me, both placed much stress on my heart. I am relatively young and in good shape, but they are both, in their own way, a challenge to endure for me. High dose IL-2, to my knowledge, the only treatment that can produce a durable response, albeit, very low success rate. Sutent, to my knowledge, has a better response rate, but not a long term durable response.

Tough choice to make with your Dad's condition. Ask your Oncologist if Nexavar or Torisel is an option.

Good luck and God Bless

Krys

 

Hi - overall, HDIL2 is considered very 'tough to take' and the patient has to be in a certain state of 'fitness' to undergo it (in hospital). BUT the big attraction of HDIL2 is this - although the success rate is very small (something like 7% only) for those few, they can hit the jackpot - ie, a complete cure of metastatic RCC! That's why people go through it, forthat chance, however small. It is, despite being 'old fashioned' the ONLY complete cure so far - it can indeed cure you of RCC.

However, not everyone isconsidered suitable to undergo HDIL2 - for example, you can't have it if you have brain mets, because HDIL2 is dangerousfor them, so you ahve to get rid of any brain mets first (and if you DO opt for HDIL2 you MSUT get a brain scan first to ensure you don't have mets lurking!). These days, with the advent of Sutent etc, a lot of oncs go straight for that, understandably. Overall, it's usually less 'tough' to take, and you don't have to be in hospital. As ever, the side effects can vary greatly, per person, from 'mildly irritating' to 'so bad you ahve to stop' (Some side effects are just 'nasty' whereas some are lifesthreatening, eg, rising bp) Each patient has to be individually assessed for suitability etc. The norm is to put patients on the highest dosage, 50 mg, but if they cope badly, that can sometimes be reduced to make it more tolerable, while still tackling the cancer.

Sutent works for around 70-75 % of patients, holding the mets stable in half the cases, and reducing them the otehr half. No one knows yet whether it works on brain mets, and there is a clinical trial currently running to investigate that.

There is also some degree of evidence that if you want to have HDIL2, it's best to go for it first, before Sutent - because there is some evidence that taking Sutent first reduces the efficacy (as such!) of HDIL2, and conversely, that HDIL2 actually increases the efficacy of Sutent. But again, this is not particularly conclusively proven. Sutent is so new that there isn't as yet a great deal of 'history' to it.

Finally, may I recommend an email group dedicdated to kidney cancer which has a huge amount of accumualted experience and expertise - a lot of folks here are there too! It's called kidney-onc and you can find it on www.cancerguide.org (I will post the link later, as I'm on the wrong computer!)

All the very best, Julie.