Melanoma help

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Melanoma help

by WilletteJF on Wed Aug 29, 2018 09:51 PM

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Does anyone near California need a referral to a great melanoma oncologist?  My huband was diagnosed with stage 4 metastatic melanoma in 2006, with 7 months to live.  We found a great treatment team, and we just celebrated another wedding anniversary.  He's still cancer-free.  I have lots to offer regarding diagnosis, treatment, side effects and survival. Been a melanoma patient myself, too.

RE: Melanoma help

by sguerra47 on Thu Sep 20, 2018 04:10 PM

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I have a friend with Stage 4.   Original lymph node removed, unknown primary, 3 small tumors in lung, and now a new lymph node has appeared near the original spot.  She could only do two yervoy, and she has done quite a few Obdivo, but these tumors have grown while on that drug.  Any suggestions?

RE: Melanoma help

by sguerra47 on Thu Nov 08, 2018 05:31 PM

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My friend is doing worse.   She had a recurrence in her lymph node while on Octiva -- they removed it.   She has three tumors in her lung.   She does not have the BRAF mutation so no help there.   She did the new drug treatments in the beginning and that is when the cancer spread to her lungs and the side effects were so bad she had to quit yervoy.   Any suggestions?

RE: Melanoma help

by WilletteJF on Fri Nov 09, 2018 11:35 PM

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If you are located on the West Coast, please see a doctor at UCLA. They are doing leading-edge research into melanoma and have many new clinical trials.  Where is she located?

RE: Melanoma help

by WilletteJF on Fri Nov 09, 2018 11:38 PM

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Sorry it took me so long to respond.  I suggest UCLA, or another center with melanoma clinical trials.  I know chemo should stop the progression, but it sometimes comes back worse than it was.  The right doctor is KEY.  When my husband was diagnosed, he first went to City of Hope.  They did not offer the trials that saved his life.  Had she done Interleukin II?

Where does she live?

RE: Melanoma help

by sguerra47 on Sat Nov 10, 2018 02:16 AM

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She has only done Yervoy and Optivo - we are in Nevada.

RE: Melanoma help

by sguerra47 on Sat Nov 10, 2018 02:20 AM

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She goes to the Cancer Center in St. George UT at the moment.   Wouldn't those doctors be able to find the clinical trials at UCLA, or do you have to go to  UCLA to do them?   Thank you so much for responding.

RE: Melanoma help

by WilletteJF on Sun Nov 11, 2018 07:12 PM

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University of Utah would not know what trials are being done at UCLA. It would be better to call them or email our doctor: aribas@mednet.ucla.edu

His name is Dr. Antoni Ribas.  He's a great guy, a real leader in the area of melanoma research and treatment.  My husband also received Interleukin II. That was his first treatment, although the clinical trial really wiped it out.  Dr. Ribas always writes back and is happy to help or will refer you to the right person. You can say you were referred by Tim Friday, that's my husband. There are other immunotherapies that she may respond to. They are all different. My husband had terrible GI side effects, but Dr. Ribas encouraged him and he pushed through.  The treatment didn't last long and the side effects were gone when he stopped.  Well worth it since he's survived 12 years and is very healthy.

Best of luck to your friend. I'm a person of faith so I will pray for her.  I know my husband's recovery was the result of prayer and faith in God's goodness.

RE: Melanoma help

by sguerra47 on Sun Nov 11, 2018 07:16 PM

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Okay.  I will pass this on.   I have seen many survivors of the original Interleukin II drug - I am not seeing as many (in my group of friends) who are surviving this advanced disease.  I have had two other friends die (young) of Melanoma in the past two years.  This is my 3rd friend to get this disease.  I am very worried about her.   Yes, prayers are important.   Thank you.

RE: Melanoma help

by marti152 on Sun Nov 11, 2018 07:26 PM

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This is a website that lists all university medical center clinical trials. http://www.uhhospitals.org/clinical-research/for-patients Most University hospitals in each state and across the country are Connected and each one is a wealth of information. University doctors are very knowledgeable and skilled. . Also, university medical centers take all insurance and if you do not have insurance They will take you. You also do not have to have to have a referral. But it is major important to have your records. Referrals are good but not mandatory. Hope this information is helpful.
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