To Bunker And Nebraska

I was just reading your postings to each other and wanted to share my findings. I've been on 5 rounds of the sutent. It is working for me too. I started with stage 4. Kidney,lung and brain. It didn't look good, we got 4 opinions before we found the right doctor. I live in WA state, I doctor in LA. It's a lot, but so well worth it. I have had numerous surgeries also. The gamma knife is wonderful for brain tumors. I've had numerous tumors treated with excellent results.As one of you said, find the most aggressive dr. that you can. It's the best option for a longer survival. I, too have had numerous CAT and PET scans. And MRI's galore. It's most important to find a fantastic Neurosurgeon besides an oncologist. He's not an expert on brain tumors. But he is an expert on RCC. I had whole brain radiation. It did nothing. I had a crainiotomy which got the larger tumor.I had my right kidney removed, gall bladder, portions of both thyroid and pancreas. The sutent has shrunk what is lest in my lymph node/lung area. My problem thus far is that the brain keeps kicking up small tumors. That is where the gamma knife is a god send. But you have to find a Gamma Knife unit that knows what they are doing. I go to USC in So Cal.for that. It's amazing. I will be 3 years out in December. It's quite a disease isn't it?
I would love to hear from you both and hope that your husband has found the direction he needs. I also am so glad to know that some else is having good luck with the sutent. I have some side effets from it and wondered if you do?
Thanks in advance to letting me horn in on your convo.

Stacey,

Your message is encouraging. My dad has renal cell CA. He
had a nephrectomy over 10 years ago and had been doing well
until recently when it spread to his pancreas. My dad feels
great so far. The doctors at USC have been following these
lesions in his pancreas for over a year and they say it is
"growing at a glacier's pace". So far it has not shown up
anywhere else in his body. He has a tumor both at the head
and tail of the pancreas. We obtained a surgical opinion who
said he could do it but it would require removing the entire
pancreas, a big surgery and difficult decision. You mentioned
you are seeing a doctor at USC. So are we, his name is Dr.
Quinn...he specializes in renal cell. He recommends watching
and waiting since the disease is fairly stable right now. Tell me
a little about your experience, the pancreas surgery, etc. Who
is your doctor at USC? Anyone else have experience with renal
cell spreading to the pancreas and treatment for that. It's so
difficult to make some of these decisions when there is not a
lot of other cases to compare it to. Would appreciate any
feedback. Thanks for sharing your encouraging story. God
Bless you.
Tara

Stacey, welcome to the "party". I started Sutent in 8/05; took six treatment cycles and was considered a complete response to the drug. I stopped taking Sutent on 4/30/06. Please ask any questions that you would like.

Hi Stacey you sound like a very courageous woman and I take my hat off to you. My husband has RCC and is now on day 13 of the first cycle of Sutent. All is good so far. Nothing to note for side effects. So here is hoping it is the miracle drug they claim it to be. From reading the board it looks like its success is proving itself. This is exciting. Your story gives hope to people starting sutent. Mazzy

hi, i just read your message i was shock to find out that someone else has gone thru what my husband is going thru its great to hear from someone thats been there done that. may i ask how many tumors you were treated for??????? and how many did they treat at one time?????????our ins. co. sent a letter saying they don't cover a pet scan for someone with metastatic renal cell carcinoma!!!!!!!i really don't understand this ins. co. reasonings. we just talk to the nuerologist of this gamma knife unit, she had know problem with starting his treatment, then we talk to the radiation oncologist,that boy i had a problem with, i guess he gets to confused or po-ed when you ask him a question while he's doing his presentation!!!i had a little problem with that.the oncologist won't start him on sutent,first he states he's going to start the sutent after he had his brain surgery,well he had surgery on 11-09-06,now he want to review all the images that the surgeon had ordered???? yes this disease is something else, i hope that no one ever has to go thru this disease. this disease gives you a pretty hard fight but we just keep fighting harder and harder and taking one day at a time. hey i'm glad you horned in as you may have said ,it will be great talking with you.later nebraska

 

On 10/29/2006 Stacey wrote:

I was just reading your postings to each other and wanted to share my findings. I've been on 5 rounds of the sutent. It is working for me too. I started with stage 4. Kidney,lung and brain. It didn't look good, we got 4 opinions before we found the right doctor. I live in WA state, I doctor in LA. It's a lot, but so well worth it. I have had numerous surgeries also. The gamma knife is wonderful for brain tumors. I've had numerous tumors treated with excellent results.As one of you said, find the most aggressive dr. that you can. It's the best option for a longer survival. I, too have had numerous CAT and PET scans. And MRI's galore. It's most important to find a fantastic Neurosurgeon besides an oncologist. He's not an expert on brain tumors. But he is an expert on RCC. I had whole brain radiation. It did nothing. I had a crainiotomy which got the larger tumor.I had my right kidney removed, gall bladder, portions of both thyroid and pancreas. The sutent has shrunk what is lest in my lymph node/lung area. My problem thus far is that the brain keeps kicking up small tumors. That is where the gamma knife is a god send. But you have to find a Gamma Knife unit that knows what they are doing. I go to USC in So Cal.for that. It's amazing. I will be 3 years out in December. It's quite a disease isn't it? I would love to hear from you both and hope that your husband has found the direction he needs. I also am so glad to know that some else is having good luck with the sutent. I have some side effets from it and wondered if you do? Thanks in advance to letting me horn in on your convo.

if you've had whole brain radiation, can you then do the gamma knife thing on your brain as well?  we seemed to have gotten the impression that all that can be done for mom is give her 10 rounds of radiation and that would be all her body could handle.

Dally K