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Does anyone know anything abot this trial- IMA901 in Patients Receiving Sunitinib?

enae
Posts: 18
Joined: Aug 2012

Hi,
I am new here. My husband was diagnosed with stage IIIA clear cell RCC in 2010.He had nephrectomy on his right kidney and there were no mets in the lymph nodes. This month the CT scan found 3 distant metastasis- in his abdomen, near his liver and in the removed kidney cavity. We are still waiting on results of his chest CT to see if there is anything in the lungs. His oncologist recommended as first line treatment Votrient. Before he starts on the Votrient I am researching this clinical trial here in California with custom developed vaccine IMA901 from patient own cancer cells for patients taking Sunitinib.Does anyone knows more about the vaccines and which is better Votrient or Sunitinib?
It has been very hard to hear the news that cancer is back, when we had 2.5 years of hope he is caner free.The oncologist was so mater of fact telling him he has 12 to 24 months. I am trying to stay positive and believe he is going to beat it against all odds. My mom beat stage IV breast cancer few years ago and she was 66. She was always positive and upbeat during her treatment, so I truly believe there is hope for my husband too.He is only 40 and in good health!I would appreciate all advise and prayers!

Ena

goyler
Posts: 11
Joined: Aug 2012

Sorry to hear about your husband’s news. I cannot give any advice as I am new to all of this. Your husband sounds like me, healthy other than the Stage III clear cell RCC with a grade 4. I am concerned with this happening to me in the future as I just had my kidney removed on April 27th of this year. I will be following this to see what works and to continue to pray for your husband and you and a speedy recovery/treatment.

Good luck and you all will definitely be in my prayers.

Greg

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Ena,

There always hope, and--in reading your post above--I see no reason why your doctor would have given your husband an expiration date. That says to me, he's not as knowledgeable about kidney cancer treatments as he/she should be. So I would highly recommend a second opinion.

Have you read Fox's postings on his initial diagnosis and his grim diagnosis of only having months left? He's now kicking butt and shooting for NED in a MDX 1106 clinical trial. My husband is on an MDX 1106/Votrient study. He is stage 4/grade clear cell kidney cancer. And he is doing well. You need to research clinical trials and see what is available for your husband. They have come out with many new drugs/treatments and everyone here is positive the magic bullet is close. Don't give up.

enae
Posts: 18
Joined: Aug 2012

We definitely are getting a second opinion.My husband oncologist is some renown specialist in USI in Southern California, but the problem is he is not at all engaged and positive about his treatment and is not offering him any options about trials etc.Before we moved to California from WA state, he had a wonderful care at Cancer Treatment Centers of America. They have a team of specialist including Naturopathic specialist, who boosted his immune system with diet and supplements.When we moved and he stop following the regiment they had prescribed and the cancer came back.Thank you for the wonderful stories of hope you share. I am sure we'll have one to tell too.

Ena

vdm13
Posts: 35
Joined: Jul 2012

Ena,

I'm a 42 year old male with Stage 4 Grade IV mRCC. I have mets in my lungs, one along my spine and some suspicious areas in my remaining kidney. I had my left kidney, adrenal gland, a slice of my spleen and a dozen lymph nodes removed in May 2012. I just completed my first cycle of Sutent which went pretty well (planning a lengthy post on that). I'm being treated at Sloan Kettering in NYC. I've never been given an "expiration date", but my doctor said I shouldn't worry about leasing a new car for 3 more years.

In my humble opinion, you need a doctor who will be part of your team, but at the end of the day your husband needs to manage the team and his treatment, and that includes firing whoever is not working with you. I'm not saying to ignore the docs, but they need to work within your treatment framework.

For me, I refuse to die and am working hard to get my immune system to beat the beast in conjunction with conventional medicine. I research as much as I can to be aware of the treatment they are recommending and I ask a lot of questions. I'm also using (and embracing) Gerald White's MAARS program and reading his book "Three Months to Life" along with using the guided imagery CD at LEAST once daily. It was recommended by the fine folks on this board and is worth every penny. Keep fighting the fight, ignore the statistics and take control.

Godspeed, prayers and love,
Vin

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

Hi Ena,

The Doctor gave a man six months to live. The man couldn't pay his bill so the doctor gave him another six months.

The Doctor called Mrs. Cohen saying, "Mrs. Cohen, your check came back. "
Mrs. Cohen answered, "So did my arthritis!"

Doctor: "You'll live to be 60!" Patient: "I am 60!"
Doctor: "See! What did I tell you?"

Your husband's doc probably doesn't specialize in RCC and hasn't kept up with the treatments that have been developed in the last few years and that are being developed today. Most of the stats available are out dated. Many here live on well past their given "expiration date" because they refused to accept it and found a doctor or medical team that fights with them, get a second, third, or fourth opinion if necessary, there is hope! foxhd's story, here, should be on top of your list. You might also check out Gerald White's MAARS program which many here find very helpful. His story is inspirational, his system uses guided imagery to help your immune system identify and destroy cancer cells naturally, it is also inexpensive. I like to say attack with extreme prejudice. Hang in there.

Good luck and Godspeed,

Gary

enae
Posts: 18
Joined: Aug 2012

My husband's oncologist is actually RCC researcher and that's why he put him on Votrient - it's in his research area, but the fact that he is not looking into any other treatment options, was not familiar with his individual case and there was no compassion and positive response is the reason we are going to see someone else. We scheduled him an appointment for next Monday with the best specialist I found in Cali specializing in RCC and he has a trial with custom made vaccine and Sunitinib. Even on the phone his team sounded much more knowledgeable and requested they have his records at least 3 days prior to the appointment so they can be familiar with his case and research what would be the best treatment options and if he is a good candidate for trials. The guy said the doctor knows all active trials and is on top of all current research for mRCC, so I am extremely hopeful we found the right place. On the positive note while requesting his records from the current hospital he got his chest CT results and there are no mets in his Lungs or chest.YES!!! And thank you GOD!
Thank you for recommending Gerald White's MAARS program. I read his amazing story and ordered the book and CD's. I hope my husband, who is also an engineer and a big skeptic would read it and believe that this will help him I am a true believer and I am witness myself that my mom defeated her stage 4 breast cancer exactly this way with visualizations, positive thinking and prayer. The doctor's were amazed when they saw that all her cancer cells are dead and she was declared cancer free two months ago.
But all this healing and believe needs to come from within the person and I hope my husband finds faith and hope. He is a positive guy, but not very spiritual and in order to believe that something will help needs to see the scientific findings. Maybe this program would be the key since is written by someone like himself.
This post became too long, but again thanks to all of you for the support and encouragement and joining on our journey to defeat the beast :-)
LOVE! Ena

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