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Newly diagnosed

matlar25
Posts: 2
Joined: Oct 2012

Hi, my name is Jan. My husband has been diagnosed with mRCC . He had a left radical nephrectomy on 9/24 and He has mets to his lungs - evidently it is all over his lungs with one nodule in the lining of the lung. He's been doing great since and even went back to work full time last week - only two weeks after surgery. He's very upbeat, positive and strong.

So, we've been offered 2 treatments. IL-2 and Sutent with a trial of Sutent and another similar drug alternating to determine side effects. AFter researching, he has decided to try IL-2. He's in very good physical condition and assuming the stress test and pulmonary function tests are normal, will start the end of November.

This is the rub...my husband and I both lost a spouse to cancer. We have both said we don't ever want to tolerate treatments that would give us a poor quality of life in exchange for a couple of extra months. Our doctor says that IL-2 is tough, but the side effects go away after a week and there is a possibility of a long term response. He also said that IL-2 isn't approved to be given after any other treatment. So, it's a one shot deal. If he doesn't do it first, he won't ever have the option to do it.

We are leaning toward IL-2, but are still concerned that it isn't the right direction because of the side effects.

Please let me know how you tolerated it, what tools you used to help you get through it and any other recommendations you might have.

As an aside, our doctor told us that the hospital administering the medication has to be a certified center - so, my husband will be going to a hospital that is certified. I've seen some posts from people who have gotten IL-2 as a second or third line drug with very poor results - and lots of side effects, and I wonder if the med was given in a certified center.

Thanks all,

Jan

PS: i would love to hear from caregivers as well:-)

Hanno's picture
Hanno
Posts: 45
Joined: Aug 2012

Hi Jan, welcome to a very special place of support. I too am quite new to the board and have constantly found renewed strength, knowledge and inspiration in member stories. You will be in good hands here.

I am very sorry to hear of your husbands diagnosis. It sounds as though you have both been through so much already. Wow though - back at work already - what a gun! It must be all that positive support you have been giving :)

I am not very familiar with the treatments you have listed, but rest assured there are people on here who are. I do have one question though, why is the IL-2 not offered after any other treatments? Is it because it is less effective?

Whatever you both choose, I wish you all the best. Keep us posted on your husbands progress Mel x

foxhd's picture
foxhd
Posts: 2258
Joined: Oct 2011

I don't believe that Il-2 has to be the first treatment option. I went to Yale New Haven begging for interlueken back a year ago. My oncologist offered me the MDX-1106 trial as a first option due to promising responses and I took it. I was told that should I not be a responder, then interlueken remained a back up plan. I may NEVER need to give IL-2 a go. I am alive and extremely well. Don't be too quick to believe that RCC is going to become a burden due to disease progression. We are leaning toward believing RCC to be a chronic condition which can be effectively beaten or controlled for many years. The key here is that many new treatments are popping up constantly and one has to plan their care so as to be around when they become available. Just to add, I was loaded with mets. Especially in my lungs which are now clear.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hi Jan,

I am sorry that life has brought you here, but welcome and now that you are here you have found a good place. Everyone here is supportive and will help any way they can. I'm sure you will be hearing from Alice who is an active member here with a story very much like yours. Her husband John was much like your husband, tried IL2, and has since moved on to a trial and is having great results. In the meantime, hang in there.

Good luck and Godspeed,

Gary

one putt
Posts: 72
Joined: Sep 2012

Hi Jan, I am Alice's husband John that Gary referred to.I was treated with IL2 in Jan. and Feb. of this year.I tolerated all 14 doses my first hospitalization at Johns Hopkins and 10 the second time.Unfortunately, it didn't work for me.My second round of treatment my blood pressure dropped and the last 3 days I was on a heart monitor confined to bed.My side effects lasted at least 3 months the two most bothersome being fatique and pruritis over most of my body.Pruritis causes itching much like you would get after a really bad sunburn just prior to peeling.I don't know what your husband does for a living.I am a trial lawyer and continued to work while dealing with my side effects.Everyone is different,but IL2 didn't have the quality of life issues I believe you are talking about.I would absolutely do it all over again for a chance at a total cure.
My dr. wanted me to try IL2 before anything else.I'm 63(soon to be 64)and in good shape at the time and my doc thought I had the best chance of tolerating IL2 at that time.Sounds like your husband's doc's recommendation for trying it first.If it doesn't work for you there are many new trials and drugs available.I had a nephrectomy with mets in my lungs and tumors in my shoulder and pelvic area.I'm currently in a trial for MDX-1106 and Votrient which has resulted in a 46% reduction in tumors and no new growths.I am currently stable so as you can see there is hope.I'm sure you'll be hearing more from my wife,Alice,with the caregiver's side of the story.Best of luck to you and your husband.

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