MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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yoopergirl's picture
Replies 8
Last reply 3/4/2012 - 10:46am

After my 3rd infusion I developed diarrhea. chills and a high fever, went to the ER last Thursday and was admitted. Pumped with antibiatics and fluids to get this fever under control it was 103.6 so that is high for an adult. They were in contact with my oncologist while I was there since he was 50 miles from the hospital that I was in. I also developed a prblems with my eyes and am being treated for that with predisone drops along with 2 others. I am now on predison orally also, I really didn't want that but he insisted and I am felling better, already am being tapered down from 40mg 3 times daily to 20 mg 3 times daily and then on Friday will br 10 mg 3 times daily. I was suppose to travel today to see him but we had a bad winter storm so rescheduled for Monday. My last infusion is suppose to be March 12th so on Monday will find out if that is possible. Just letting you know where I have been. Yoopergirl.

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Anonymous's picture
Replies 2
Last reply 3/1/2012 - 3:08pm
Replies by: vivian, washoegal

For about two months, off and on, I had what seemed to be a hemoroid or small tear that would bleed when I wiped. It seems to have resolved, but my dermo felt I should have a GI consult. I was advised to take any bleeding seriously . I was told melanoma likes to go to the small intestines ( I am stage IV / NED) so, I should have an endoscopy as well as a colonoscopy. I have no other symptoms. Has anyone else gone ahead with these procedures because of a bit of bleeding that comes and goes? I am going to go ahead and have them done on Friday.

NancyGM

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Eileen L's picture
Replies 17
Last reply 3/3/2012 - 10:21am

Hello to everyone. I haven't been on the board lately, but wanted to let folks know what was happening. I had my six month scans a few weeks ago and unfortunately an adrenal gland tumor that had been there for three years and fairly inactive decided to almost double in size to 5.4cm. So I am off for a FNB this afternoon and depending on results will probably be looking at some change in treatment. Right now I am leaning towards getting the sucker out since it seems to be the only active tumor in my body, but have been in conversations with Dr. Daud at UCSF about perhaps trying a trial of BRAF and MEK. Could be a benign tumor, but since the beast likes the adrenal gland I am thinking more probably mel than not.

For those of you who don't know me, I was diagnosed Stage IV in September, 2007 and my initial treatment was chemotherapy coupled with Nexavar. I was one of the lucky few that responded to this regime.  I have continued to take the Nexavar. I have two tumors in my lungs which shrung and then haven't  grown in about three years so unsure if they are even active. The pesky adrenal tumor showed up in February, 2009 and has been slowly growing until it had its recent little growth spurt.

There is hope, life and joy after a stage IV diagnosis! I am feeling very positive and belief that I will be around for quite awhile. Love and prayers always are gratefully accepted.

Thanks to everyone on this board who have been so supportive and kind. This is an amazing place.

Love and gratitude,

Eileen L

 

 

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Replies by: Gene_S, Anonymous, washoegal, Janner

See:

For much more info, copy and paste the following into your search for details.

" Briana Cox's daughter was diagnosed with the same stage-four melanoma "

A very sad story

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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vivian's picture
Replies 3
Last reply 2/29/2012 - 5:33pm
Replies by: lhaley, TSchulz, Erinmay22

After being NED for 16 months, (stage IIIa, nodular, 4.35 mm, mitotic rate 9 on mid back), I found a lump under the skin a little more than an inch below the CLND incision.  The surgeon did an excisional biopsy a week ago.  He called this morning to say that the preliminary report was melanoma.  That's all I know, but of course, my mind is racing.  My last scans were in November and they were clear, so I am hoping (praying) that this is just a single little subcutaneous met.  If so, will they probably just do a wide excision as they did with the primary?  Does this move me to stage IV?  

I know I don't have enough information yet to even guess at what is to come, but my appointment with the oncologist isn't for a week.  Between now and then, I would like to do as much research, planning, etc. as possible so that I can ask informed questions about treatment possibilities.  I do know what to expect if it is stage IV.

Thanks for any information/experiences you can share.  I hope all of you are feeling well this morning!

Lear

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HelperDaughter's picture
Replies 17
Last reply 3/5/2012 - 7:43am

My mom died on Wednesday, February 22, 2012.  I can't believe it.  I really don't know what else to say.  My mom is gone. 

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HelperDaughter's picture
Replies 1
Last reply 2/29/2012 - 12:35pm
Replies by: boot2aboot

My mom died on Wednesday, February 22, 2012.  I can't believe it.  I really don't know what else to say.  My mom is gone. 

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Replies by: LynnLuc

http://www.sciencedaily.com/releases/2012/02/120228185828.htm  

ScienceDaily (Feb. 28, 2012) — Researchers at Moffitt Cancer Center in Tampa, Fla., and colleagues in California have found that the XL888 inhibitor can prevent resistance to the chemotherapy drug vemurafenib, commonly used for treating patients with melanoma.

Potential Solution to Melanoma's Resistance to Vemurafenib

Vemurafenib resistance is characterized by a diminished apoptosis (programmed cancer cell death) response. According to the researchers, the balance between apoptosis and cell survival is regulated by a family of proteins. The survival of melanoma cells is controlled, in part, by an anti-apoptotic protein (Mcl-1) that is regulated by a particular kind of inhibitor.

Their current findings, tested in six different models of vemurafenib resistance and in both test tube studies and in melanoma patients, demonstrated an induced apoptosis response and tumor regression when the XL888 inhibitor restored the effectiveness of vemurafenib.

The study appeared in a recent issue of Clinical Cancer Research, a publication of the American Association for Cancer Research.

"The impressive clinical response of melanoma patients to vemurafenib has been limited by drug resistance, a considerable challenge for which no management strategies previously existed," said study co-author Keiran S. M. Smalley, Ph.D., of Moffitt's departments of Molecular Oncology and Cutaneous Oncology. "However, we have demonstrated for the first time that the heat shock protein-90 (HSP90) inhibitor XL888 overcomes resistance through a number of mechanisms."

The diversity of resistance mechanism has been expected to complicate the design of future clinical trials to prevent or treat resistance to inhibitors such as vemurafenib.

"That expectation led us to hypothesize that inhibitor resistance might best be managed through broadly targeted strategies that inhibit multiple pathways simultaneously," explained Smalley.

The HSP90 family was known to maintain cancer cells by regulating cancer cells, making it a good target for treatment. According to the authors, the combination of vemurafenib and XL888 overcame vemurafenib resistance by targeting HSP90 through multiple signaling pathways.

There was already evidence that HSP90 inhibitors could overcome multiple drug chemotherapy resistance mechanisms in a number of cancers, including non-small lung cancer and breast cancer. Because XL888 is a novel, orally available inhibitor of HSP90, the researchers hoped that it would arrest the cancer cell cycle in melanoma cell lines.

In their study, the inhibition of HSP90 led to the degradation of the anti-apoptopiuc Mcl-1 protein. The responses to XL888 were characterized as "highly durable with no resistant colonies emerging following four weeks of continuous drug treatment." In other studies not using XL888, resistant colonies "emerged in every case," they reported.

"We have shown for the first time that all of the signaling proteins implicated in vemurafenib resistance are 'clients' of HSP90 and that inhibition of HSP90 can restore sensitivity to vemurafenib," concluded Smalley and his colleagues. "Our study provides the rationale for the dual targeting of HSP90 with XL888 and vemurafenib in treating melanoma patients in order to limit or prevent chemotherapy resistance."

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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hope4cure1's picture
Replies 3
Last reply 2/29/2012 - 12:56am

Hi everyone.  My husband's PET and CAT were still clear today. In January 2011, he had 4 mets to liver and 2 lymph nodes in his chest.  He started on a Carboplatin/Abraxane/Avastin combo.  He tolerated the treatments well.  In June, he stopped the Carbo due to an allergic reaction and continued with the Abraxane/Avastin.  In July and September his scans were clear.  He stopped  Abraxane in September and continued with Avastin as a maintenance drug.  Today's scans mark 7 months NED.     

I realize that chemo doesn't have a stellar response record.  However, I want to give a glimmer of hope to anyone whose doctor has suggested chemo as the next step.  Statistics only apply to where you fall within the numbers.  This was my husband's first line of treatment, after surgery to remove lung mets in late 2010.   He is BRAF negative, NRAS positive.

My hopes and prayers go out to all of you.  Now that melanoma is starting to take its rightful place in the spotlight, hopefully the cure is imminent.

Much love,

Hope

    

Become what you admire.

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boot2aboot's picture
Replies 12
Last reply 3/4/2012 - 12:22am

 

For all of us Braf + people we might soon one day be able to treat our mel like a chronic condition:

 

 

Vemurafenib resistance is characterized by a diminished apoptosis (programmed cancer cell death) response. According to the researchers, the balance between apoptosis and cell survival is regulated by a family of proteins. The survival of melanoma cells is controlled, in part, by an anti-apoptotic protein (Mcl-1) that is regulated by a particular kind of inhibitor.

Their current findings, tested in six different models of vemurafenib resistance and in both test tube studies and in melanoma patients, demonstrated an induced apoptosis response and tumor regression when the XL888 inhibitor restored the effectiveness of vemurafenib.

The study appeared in a recent issue of Clinical Cancer Research, a publication of the American Association for Cancer Research.

"The impressive clinical response of melanoma patients to vemurafenib has been limited by drug resistance, a considerable challenge for which no management strategies previously existed," said study co-author Keiran S. M. Smalley, Ph.D., of Moffitt's departments of Molecular Oncology and Cutaneous Oncology. "However, we have demonstrated for the first time that the heat shock protein-90 (HSP90) inhibitor XL888 overcomes resistance through a number of mechanisms."

The diversity of resistance mechanism has been expected to complicate the design of future clinical trials to prevent or treat resistance to inhibitors such as vemurafenib.

"That expectation led us to hypothesize that inhibitor resistance might best be managed through broadly targeted strategies that inhibit multiple pathways simultaneously," explained Smalley.

The HSP90 family was known to maintain cancer cells by regulating cancer cells, making it a good target for treatment. According to the authors, the combination of vemurafenib and XL888 overcame vemurafenib resistance by targeting HSP90 through multiple signaling pathways.

There was already evidence that HSP90 inhibitors could overcome multiple drug chemotherapy resistance mechanisms in a number of cancers, including non-small lung cancer and breast cancer. Because XL888 is a novel, orally available inhibitor of HSP90, the researchers hoped that it would arrest the cancer cell cycle in melanoma cell lines.

In their study, the inhibition of HSP90 led to the degradation of the anti-apoptopiuc Mcl-1 protein. The responses to XL888 were characterized as "highly durable with no resistant colonies emerging following four weeks of continuous drug treatment." In other studies not using XL888, resistant colonies "emerged in every case," they reported.

"We have shown for the first time that all of the signaling proteins implicated in vemurafenib resistance are 'clients' of HSP90 and that inhibition of HSP90 can restore sensitivity to vemurafenib," concluded Smalley and his colleagues. "Our study provides the rationale for the dual targeting of HSP90 with XL888 and vemurafenib in treating melanoma patients in order to limit or prevent chemotherapy resistance."

Provided by H. Lee Moffitt Cancer Center & Research Institute

don't back up, don't back down

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Hi,

I really would like as many stage 3A friends on here as possible if you would please respond...   I find myself with all sorts of issues, questions, feelings, well, everything that sometimes I feel is either too heavy for earlier staged melanoma patients, or way too trivial for even more advanced staged patients...  please get together with me if you would...  if you were previously stage 3A and would like to share I would appreciate also.  Right now everything is so new to me...just need to express how I feel and don't want to offend anyone.

IT'S YOUR BODY AND YOUR LIFE...BE INFORMED!!!

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Hello.

I had a consult at NIH last week. They wanted to put me in the TIL plus TBI trial. I just found out that I don't qualify because of my prior radiation history. So, now I have to decide between doing the TIL + IL-12 trial at NIH or going to Moffitt or MD Anderson and doing their TIL protocol.

NIH wasn't sure if MD Anderson and Moffitt were getting the same results that they have been able to get with TIL. They had heard that they may be having trouble growing the TIL cells. Does anyone know anything about this??

I'm really not sure what to do. It's so hard to make these decisions sometimes.

Thanks!!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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Just a very BIG thanks to your responses! I feel much more in control of my own destiny now, and that is solely from all your input! God bless! I'll probably drive you all nutty with my questions now :)

Positive energy and prayers to all!
Kim

I can do all things through Christ who strengthens me.

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Kimberly Duncan Watts's picture
Replies 5
Last reply 2/28/2012 - 1:27pm

Another question already! I was told I do not qualify for zelboraf because my BRAF gene is "abnormal". Again, that happen to anybody else?

I can do all things through Christ who strengthens me.

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Kimberly Duncan Watts's picture
Replies 8
Last reply 2/28/2012 - 1:18pm

I completed my 4th dose January 8. At my 2 wk follow up appt I was so anemic it required a double transfusion and I now am on an iron supplement. This happen to anyone else? Also, as I am the only IPI patient in my area (upstate NY) and only the 5th melanoma patient ever, my onc. Is flying blind, although he is meant to be in contact w the specialist at Roswell in Buffalo (who we spoke to this morning and for the second time, can't find that they have rec'd scans...) My first scans showed no disease in any organs, but he couldn't tell me if the lesions in my abdomen were even lesions anymore, maybe cysts, and they couldn't really read the bowel. I am rapidly losing confidence as I was diagnosed in 08 and have been thru Interferon as well as IL2 this past summer. Any advice will be greatly appreciated. I was originally told IPI was a "one-shot" deal and now I read of those of you that are rein ducted. HELP!!! I am beginning to feel these people are just not on top of my case. 53years old with 5children , 2 grandchildren and a new granddaughter literally any second now! I'm a fighter and NOT ready to pack it in!!!!

I can do all things through Christ who strengthens me.

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