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Husband about to start cycle 2 of IL-2 - Seeking caregiver support group

KAG1212
Posts: 1
Joined: Feb 2013

Hello everyone! I have been reading the boards and thrilled to find this resource.

My husband was diagnosed with RCC 7 years ago. Had a nephrectomy at Hopkins and for 5 years, all clear. On the 5 year check in, they found a spot on his lung. Summer 2012, he had a wedge resection by Dr. Yang and again all clear ... until November. They found a fast growing tumor in a lymph node near his heart. Fast forward - Dr. Hammers at Hopkins - cycle 1 of Il-2 in December 2012/early January 2013. Our month out scan showed the tumor had not grown, nor had it shruck. So we go back on March 7 for another scan and will begin cycle 2 of IL-2 in March. Fingers crossed!  

I am wondering if anyone knows of support groups in the DC/metro area for caregivers (we live in Rockville, MD). I am struggling with how to explain what we are going through without going into too much detail. People don't understand why there isn't a definitive start and top time of the treatment. Why this isn't like regular chemotherapy. Family members want to help out but there is nothing that I can think of to ask them to do, other than offer emotional support. I guess my surprise and biggest struggle has been how some people react to our situation. Some have pity. Some act like nothing is happening. Some act like we are imposing upon them (people at work who are frustrated by the uncertain schedule of IL-2). I am working hard to stay strong, to be focused on my husband's recovery and be grateful for all that we have -- but I realize that I need a place to vent and get some coping tools.

Thanks!

 

 

 

NanoSecond's picture
NanoSecond
Posts: 548
Joined: Oct 2012

I am not aware of a support group in this area, but I would be happy to participate if there is one.

I actually also live in Rockville, MD.

I had a radical left nephrectomy in May 2010.  Tumor was 11cm; Chromophobe; Furman G3 (for what that is worth).

Was NED until this past July. Then bone mets discovered on my sacrum (base of spine) and left femur (hip/thigh).

On Sutent 50mg/day 4wks on/1wk off plus 120mg Xgeva/mo. Have had no significant side effects since starting on Sutent. Doing extremely well so far (knock wood).  Last CT and full body nuclear bone scans plus follow-up X-rays in November showed only new bone growth.

Happy to chat anytime. Or you may enjoy reading what I have been doing to minimize any side effects from taking Sutent. It's all due to my diet and certain supplements. It explains the science and the rationale behind my approach which is based on the book by Dr. Keith I. Block called, "Life Over Cancer".

Email me at: n.feldman@videopost.com if you are interested in a copy.  It's 51 pages long - far too long to post here (or anywhere else).

Best wishes,

 

-NanoSecond (Neil)

 

 

 

foxhd's picture
foxhd
Posts: 1952
Joined: Oct 2011

Maryland appears to be the hot spot. Was Michigan. Don't tell us you ride motorcycles and golf too. Maybe it is just me, but the concept of support groups is good. I think that your cancer center will have people you can talk with. I don't think that there is much better or candid information than you can find here. Make yourself at home and partiicipate here freely. I guarantee people here will understand exactly what you feel and need to know and share. Believe me. You are not alone. Lot's of people here.

NanoSecond's picture
NanoSecond
Posts: 548
Joined: Oct 2012

Hi there Fox,

Well no, I don't ride a motorcycle - yet. But I used to be a private pilot until Sutent grounded me by disqualifying my Third Class Medical certification. So I guess that counts as the worst side effect I have had from it so far.  Regardless, it is now clear I don't have enough excitement in my life these days - so maybe I should consider it?

And if I take up golf does that mean someone around here will be willing to teach me the secret handshake?  :)

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

I have Grade 4 RCC  with Sarcotimoid Features.  The Nephrectomy was Last June (at Fairfax), and a solitary Met was found in my lung (which was resected at NIH 2 weeks ago). 

If you want to set up sometype of group, it may be possible to get somthing through "Life With Cancer" at INova.  They have a facility right off the beltway in Fairfax.

I am sure my wife would like to join in if it was opened up to RCC (or even metastatic RCC) caregivers.

We live in Vienna.

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