Sarcomatoid?

Hello,

 I made a small reply to Silwc on RCC board. My wife has a RCC sarcomatoid with mets to the head, lung, bones... For the head, she has had 13 days of radiotherapy. She has a paralyzie on the right face due to a tumor localized at the base of the brain. Hope that radiotherapy killed this tumor.

She was under sutent for six months, the tumor  in the renal bed was disappeared for a while, the mets have seem to get off, but the tumor is reappeared :(, very quickly.

She will start a chemotherapy next week, but I don't know what kind. Where did you heard about gemcitabine ? I find some information about adryamicine chemo (or cytotoxic) on cancerguide.org website. I'm in France. When I will know about the kind of chemo, I will post a new message to inform you.

Best of luck. 

No one has told us about the sarcomatoid variation. But I saw your post yesterday and started wondering if that is what we are dealing with. I've read all of my husbands medical records and it isn't mentioned, but they keep telling us that he has a very aggressive case of kidney cancer.

He was diagnosed with RCC in September when bloodwork showed extremely dangerous calcium levels. They found a 15 cm tumor on the right kidney and performed a radical nephrectomy three days after diagnosis. After he was released, we were informed that he already had mets to both lungs.

He had one round of Sutent. It had no effect. The catscan revealed more tumors and the largest tumor grew from 64 mm to 84 mm while on Sutent. The tumor was pressing on the superior vena cava causing premature SVC syndrome. This caused loss of mobility in his right arm and a drooping eyelid. The doctor sent him to radiology for 21 days of radiation to try to move the tumor off the vena cava. The radiation was effective enough to restore use of the arm. The next catscan showed that the targeted tumor did not grow and there was some center necrosis of the tumor. Two smaller tumors in the path of the radiation shrunk. However, the catscan showed a new tumor in the renal bed where the kidney was removed. This new tumor is already 5 x 10 cm.

The oncologist had wanted to try high dose interleuken, but when he saw the last catscan he said that the disease was too aggressive for IL-2. He decided to go with chemo. Al had a port put in on Monday and started on chemo yesterday. He is on gemcitabine, which will be administered weekly and 5FU which is delivered by pump for 21 days straight.

After I read your post, I looked up sarcomatoid. I found a site that said that recently gemcitabine has been used to treat sarcomatoid renal cancers. So I think I need to ask the doctor if we have the sarcomatoid variation.

I don't think I've really helped answer your question. I hope someone can give you more information. However, I think you may have shed some light for me as to why nothing has helped contain this. Thank you again.

Ame

Silwc,

I sent you a private reply on Friday.

What did the doctors say?

My mom was diagnosed with Sarcomatoid RCC.  It all started in July 06 when she was in a bike accident.  On CT scan, the kidney cancer was discovered, which was removed (the entire kidney) later that month.  We were told they felt it was encapsulated and had not spread.  We thought we were lucky.  She recently went for 6 mo follow-up and the cancer metastisized to the lymph nodes around her lungs and a she has a small spot on the other kidney.  Surgery was performed 3/1/07 and they found 10 to 20 lymph nodes enlarged and only removed one.  Apparently her kidney cancer was 90% clear cell, but the lymp node cancer is "mostly Sarcomatoid."  She was started on Sutent yesterday.  Still don't know how she will tolerate it, etc... but we're praying, praying, and praying.  U of M and Mayo Clinic were consulted and both agreed that would be the first thing to try.  But I've read that Sarcomatoid is one rare RCC that can respond to chemo.  Maybe we'll try that if this doesn't work.  But we're hoping it works.  She is 68 and has a lot to live for.  I hope things are going well for you.  God Bless.

Redbie,

I posted the last message about my mom.  Please let us know if the chemo works.  Did you find out if its Sarcomatoid?  Appreciate any information.  My mom is currently on Sutent (one week so far).  Just want to get a back up plan in place!  Thank you.  Thoughts are with you.