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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Terra's picture
Replies 6
Last reply 8/31/2011 - 11:26pm

Derek had scans 3 weeks after his last ipi injection and scans show progression in his thorax (no measurements) and right lung (no measurements) and progression in his liver (1.7 to 3.3. and 1.2 to 1.5) and a new tumour behind his eye. 

 

We really want to believe that ipi just hasn't started working yet but our oncologist does not want to wait.  He would like to radiate his lung, thorax area, and eye - 5x, and do chemo - 2x (carbotaxol) for his liver - to attempt to get things under control.

 

My question is that if ipi stimulates the immune system and chemo kills it will that not wreck anything that ipi might still be trying to do and how do you tell between inflammation and continued growth - I really need some help, please...should I be asking for measurements and going back and calcualting the rate of growth or progression before and after ipi or go with chemo and hope it doesn't undo any possibility that ipi could still be working?

 

Thank you in advance

Terra 

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EricNJill's picture
Replies 60
Last reply 8/31/2011 - 10:06pm

At 12:12 a.m. Eric is now an angel in heaven.  My heart is broken.  Now that Eric is finally at peace, my battle is just beginning.  Please pray for God to give me strength.  Eric is my hero, my soulmate and now my angel.  I love you forever, Eric.

JillNEric in OH

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NYKaren's picture
Replies 7
Last reply 8/31/2011 - 3:45pm
Replies by: Richard_K, NYKaren, JerryfromFauq, Anonymous

Hi,

If anyone is a Sloan patient and did IL-2 at Yale New Haven, can you please tell me what the process is, i.e., once the decision was made, how long before you actually went to Yale for treatment?  Did it have to be pre-approved?  I have Empire BC-BS, who didn't need pre-approval for Ipi, because they considered it chemo, wondering about the process for IL-2. 

Even though Ipi killed some surface cells, the Mel is still there underneath and I'm sure I see a slow spread.  It's now abbuting my ear and eye and spreading upwards and downwards as well.

Wolchuk is back on Thursday & I'm seeing him @ 8:15 a.m., but I'm so wound up and nervous, I'm hoping someone on this board has been a sloan patient who went to Yale.

ALSO, I cannot get onto the link for Jane's list of what to bring for I-L 2.  Does anyone have the list?  You can post it here or email it to me at karenb613@aol.com

Thanks,

karen

Don't Stop Believing

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JerryfromFauq's picture
Replies 1
Last reply 8/31/2011 - 3:00pm
Replies by: Tracy Chicago

Some body likes MDA and dislikes Melanoma!  JackieW asked me to post this for her since she coouldn't get it to post for her.

http://www.mdanderson.org/publications/promise/issues/summer-2011/mulvas...

Jim Mulva is the CEO of ConocoPhillips. His wife, Miriam, is his support system and a powerful force in her own right. What’s most impressive, however, are the gracious demeanors and philanthropic hearts that guide their professional and personal lives.
       Their recent $5 million contribution to the Miriam and Jim Mulva Fund for Melanoma Research, for example, reflects their goal to help a team of doctors at MD Anderson make advances in melanoma in a way that provides tangible success and helps patients. The gift will support the research of Patrick Hwu, M.D., chair of the Department of Melanoma Medical Oncology; Elizabeth Grimm, M.D., Ph.D., professor, departments of Experimental Therapeutics and Melanoma Medical Oncology; and Jeff E. Lee, M.D., chair of the Department of Surgical Oncology and co-director of the Melanoma and Skin Cancer Research Program.
         “They’re working hard to map tumors through individualized therapy, to eradicate the tumors and save lives,” says Miriam. “We’re proud and pleased to be a part of that. We met the doctors, and they’re so committed to and excited about what they’re doing. It was contagious.”

ConocoPhillips has been involved with MD Anderson for many years, says Jim.
“We refer our employees and retirees from all around the world there because it’s the premier cancer institution in the world. I’m proud to be affiliated with, help and know MD Anderson.”

The Mulvas’ relationship with MD Anderson took on a more personal note four years ago, when their youngest son Jonathan was diagnosed with melanoma just three weeks before his wedding.

Jonathan’s diagnosis came as a complete surprise, says his mother.

“He had an annual physical exam including a visit to the dermatologist,” says Miriam. “He went to MD Anderson after finding a malignant mole on his forehead. They did such an incredible job, and we were so pleased with everyone from the administration to the doctors and surgeons.”

Jim Mulva has been on The University Cancer Foundation Board of Visitors since 2003 and has enjoyed seeing the fruits of his labor firsthand.

“It’s just a natural fit for us to want to support MD Anderson,” he says.  “It’s such an incredible institution, and while it’s very large, it’s still very personal. Everyone there is committed to what they’re doing. It’s inspiring to see.”

Giving back is one of the Mulvas’ top priorities. Both Jim and Miriam are involved in numerous charitable efforts supporting education, youths and medicine.
  “We’ve been blessed,” says Jim. “What we have is not necessarily ours, and it’s important what we do with it. The kind of commitment, clinical work and research going on at MD Anderson to extend and save lives takes financial resources. The more we all do this together in a national way, the more we’ll help MD Anderson with its mission of Making Cancer History®.”

Video at www.makingcancerhistorycampaign.com.

 
I'm me, not a statistic. Praying to not be one for years yet.

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deirgey's picture
Replies 2
Last reply 8/31/2011 - 12:16pm
Replies by: MariaH, FormerCaregiver

Hi All,

  My father is Stage IV and started on Yervoy back in April 2011 after it came on the market.  He received colitis after the first infusion and started on steriods right away.  His 2nd treatment was delayed but he started back up and received his last 3rd treatment at the end of June.  He was having pain in his hip in the beginning of July and in August they found out he had a new tumor growth (9cm).  He had a bone scan and MRI of the pelvic region and both were clear of cancer.  It took them a while to find the tumor (not sure why) but they finally gave him a CT scan in his pelvic region to uncover it in the middle of August.  The scan revealed a lot of disease progression since April with many new sites in his lungs and liver.  His doctor claims the treatment is working and that he has had a lot of "success" so far.  He also said that this drug does not have dramatic responses, meaning most of the time the tumors will just be stable and not disappear.  When I read the blogs of the IPI responders, their tumors are disappearing.  As we understand Yervoy, it does take time to work but the scans were very discouraging for my father.  He is getting surgery to remove the tumor in his hip and the doctor wants to follow up with scans in October along with another infusion of Yervoy then. 

Does anybody else have experience with Yervoy/IPI where it took a while (20+ weeks) for the drug to make the tumor growth become stable or disappear?

Really appreciate your input.  Thanks!

Deidre Grief (Father Stage IV)

 

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jmmm's picture
Replies 6
Last reply 8/31/2011 - 2:15am

My husband was dx with stage 4 in January.  2 surgeries, failed at Gleevec (he's c-kit positive), started Yervoy in May.  Completed his 4th cycle on July 5.  A scan showed the 2 tumors were gone, but one area of concern in his stomach.  He had a scan last week and the results yesterday showed a tumor in his belly and one in his neck.  The dr. thinks it's new disease.  Now what??  He is braf positive, so we know he can use Zelboraf, but we know that just buys a few months at best.  What other trials are out there that look promising?  Help--he's only 38 and we have 3 little boys at home who need their Dad!

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http://www.modernmedicine.com/modernmedicine/article/articleDetail.jsp?i...

Publish date: Jun 1, 2011
By:  Louise Gagnon

UV damage

The melanomas that occur when the skin is chronically exposed to ultraviolet light occur on sites such as lower dorsal arms or the head and neck, and they tend to occur in individuals who are older than 50 or 60, according to Dr. Bastian.

"They (the melanomas) develop through a different genetic pathway than BRAF, and we found c-KIT mutations in about 20 percent to 30 percent of mutations in these melanomas," he says. BRAF is infrequent in these melanomas, he says.

"NRAS represents about another 15 percent of the mutations. Almost half of these melanomas don't have a specific, known oncogene driver assigned to them yet. Thus, these melanomas arise in later life, have a specific anatomic distribution and different genetics," Dr. Bastian says.

The c-KIT mutations also occur in up to 30 percent of acral melanomas. These melanomas occur on the palms, soles and nails, sites that are not exposed to ultraviolet light. Acral melanomas represent up to 5 percent of all melanomas in the U.S. They are the most common type of melanoma in African-Americans and Asian-Americans.

"Acral sites are usually protected by a thick layer of the skin," he says. "Sunlight is unlikely to play a role in their formation."

Other melanomas

Mucosal melanomas that develop in the paranasal sinuses, anogenital region and oropharynx are somewhat similar to acral melanomas in that they also harbor KIT mutations, but they also have genetic alterations that separate them from acral melanomas.

"They share commonalities with acral melanomas, but they are regarded as distinct," Dr. Bastian says.

Another type of melanoma is uveal melanoma, which is the most common intraocular cancer. It is estimated that 40 percent of uveal melanomas contain mutations in GNAQ, which encodes an alpha subunit of heterotrimeric G proteins that act downstream of G-protein coupled receptors.

A recent study that Dr. Bastian published examined the genetic composition of uveal melanomas, and he and co-investigators found that 83 percent had somatic mutations in GNAQ or GNA11, a closely related gene, concluding that the two genes appear to be major contributors to uveal melanoma. (Herlyn M, Nathanson KL. N Eng J Med. 2010;363(23):2256-2257).

They are two oncogenes that are mutated in mutually exclusive patterns. Like BRAF, the mutations need to be followed by additional genetic alterations to make a melanoma.

"The uvea of the eye has melanocytes in the iris, ciliary body and choroid," Dr. Bastian says. "There are typically no mutations in BRAF, c-KIT or NRAS in melanocytic neoplasia arising from these sites."

Based on the finding of mutations in GNAQ and GNA11 and the observation that they activate the MAP-kinase pathway, there is a trial using MEK inhibitors to treat uveal melanoma, says Dr. Bastian. There are also ongoing studies on treating melanomas arising from c-KIT mutations.

"The recognition of these biological subtypes is essential to make progress in the field," Dr. Bastian says. "We cannot lump all of the melanomas together. If we do, all of the therapeutic benefits in subgroups will be washed out and missed."

I'm me, not a statistic. Praying to not be one for years yet.

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Derek had scans 3 weeks after his last ipi injection and scans show progression in his thorax (no measurements) and right lung (no measurements) and progression in his liver (1.7 to 3.3. and 1.2 to 1.5) and a new tumour behind his eye. 

 

We really want to believe that ipi just hasn't started working yet but our oncologist does not want to wait.  He would like to radiate his lung, thorax area, and eye - 5x, and do chemo - 2x (carbotaxol) for his liver - to attempt to get things under control.

 

My question is that if ipi stimulates the immune system and chemo kills it will that not wreck anything that ipi might still be trying to do and how do you tell between inflammation and continued growth - I really need some help, please...should I be asking for measurements and going back and calcualting the rate of growth or progression before and after ipi or go with chemo and hope it doesn't undo any possibility that ipi could still be working?

 

Thank you in advance

Terra 

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Doug-Pepper's picture
Replies 2
Last reply 8/30/2011 - 9:26pm
Replies by: jax2007gxp, alicia

Praise the Lord! Doug had a clear pet scan last week. We are so thankful. He has continued a much healthier diet, supplements, alkaline water, & lots of prayer since his initial dignosis in Oct. 2010. He still sees the plastic surgeon, dermatologist, & oncologist every couple of months for body & lymph node checks. Just wanted to share some good news. Praying for all of you on here. Many have been so helpful.Thanks, Pepper.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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carol b's picture
Replies 3
Last reply 8/30/2011 - 8:39pm

I had 3 tumors removed under my arm. Now they want to do radiation. Problem is i have had radiation before for breast cancer. Now they question is how serious will it be if thr radiation treatments overlap just a little. I was told it could cause lymphodema and tissue death,, Like a Chance of getting it.. The problem is they give me 2 options. A 5 day high dose radiation or a 20 dose low ratidiation. The 5 day treatment increases my chance of lymphodema and tissue death by 15% and the 20 treatments a 10% chance, now thats added to the 20% chance that i already have of getting lymphodema after surgery.. I have not had any lymphodema after surgery. So bacially i want to know do you think it will be ok to do the 5 day treatment and just take the chance of lymphodema and tissue death.. i have been so lucky so far with no problems. I just need a second opinion on here. I live 3 hours away from treatment. So the 5 day just makes more since to me. just need some answers about the treatment, and opinions as well... thanks in advance for answering...prayers to all on here who are going thru the same thing and even worse things, its a horrible disease.

Carolb

Stage 4

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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jax2007gxp's picture
Replies 8
Last reply 8/30/2011 - 8:31pm

Hello all,

I've read about patients and caregivers being trained in massage by a lymphedema specialist.  Tonight, I was watching a television program which featured a high-end spa where they perform a "lymphatic massage" technique.  The woman being interviewed explained the benefits of this sort of massage for folks with a weak immune system, but never mentioned people whose lymph nodes had been removed.  Does anyone have experience with this sort of massage? 

On a slightly side note, I'm considering a short getaway prior to my lymphedectomy.  Should I skip massage treatments?  Could massage spread the melanoma???

Looking forward to any thoughts on the subject.

Jacki

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http://mct.aacrjournals.org/content/6/3/1159.full

Long article that discusses c-kit mutations and resistance to treatments.

I would expect similar modes of findings in all of the targeted attacks on different mutations other than just c-kit.  This shows what the medical research is up against in attempting to narrow the attack on each mutation in each type of cancer (even within the different types of c-kit melanoma!).  

The introduction, results and Discussion sections are especially interesting.
Wish I had a better background to understand the details even better.

The article sections are:
 

Abstract
Introduction
Materials and Methods
c-KIT Expression in FDC-P1 Cells
c-KIT Kinase Inhibitory Drugs
Immunofluorescence Assay
Cell Proliferation Assay
Immunoprecipitation and Western Blot Analysis
Structural Analysis
Results
Expression Levels of c-KIT in FDC-P1 Cells
Preliminary Studies with V654A Mutant c-KIT
Effect of the V654A Substitution in Combination with V560G, an Activating Mutation Characteristic of GIST, on Drug Sensitivity
Effect of Kinase Inhibitors on c-KIT Phosphorylation
Discussion

I'm me, not a statistic. Praying to not be one for years yet.

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petie540's picture
Replies 3
Last reply 8/29/2011 - 9:51pm
Replies by: petie540, acyr, Lisa13

Discontinued Temodar in June due to slight increase in size of lung mets. Still subcentimeter. Began a clinical trial with ipi 10mg/kg and GSM-250 fourteen days after each infusion. Nothing dramatic until four days after the third infusion when I developed quite a nasty rash-quite uncomfortable. Started on prednisone 40mg/day and after two days feel much better. One more infusion, then cat/mri on 9/30.Keep you all posted!

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Donna M.'s picture
Replies 1
Last reply 8/29/2011 - 9:45pm
Replies by: BethA

So after a solid week of dressing changes because my picc got wet, I found the DryPro Waterproof PICC Protector by DryCorp.  It's a rubber sleeve that you slip over your arm, and it has a pump that creates a vacuum seal around your PICC.  You can also use it for swimming.  I just tried mine, and it works!  Check it out at www.drycorp.com.

Hope everyone is having a good day!

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Wilfred's picture
Replies 11
Last reply 8/29/2011 - 10:36am

One hundred seven days from the last positive diagnosis, 99 days from the last surgery, and now I have a new melanoma, This is the sixth melanoma on the same ear, five of them in the past 4 years. My friends all tell me that I am an unusual person,  but I don't think this is what they were refering to. How common is this? Should this be happening? Every time the pathologists say that the margins are clear. Pretty soon I won't have anything to hang my hearing aid on.

If you fight, you may lose, If you don’t fight, you will lose.

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