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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Jewel's picture
Replies 4
Last reply 9/1/2011 - 3:59pm

Hi Charlie S,

Weather you know it or not you have been an amazing influence on myself and many people on this board. I have only written a few times Since my husband was diagnosed in 2010.

Last week you wrote about feeling "spooked" something that not only made you seem human but more real for the rest of us. You have had melanoma in your life for a LONG time (something that gives the rest of us hope....yeah right lucky you)

Please let us know how you made out because I know you have MANY friends on this board who would like to know.

I for one would like to Thank You for your  No Bull**** advice. Keeping it real is what it is all about. Hope to be shooting the Shit with you for many years to come!!!!

Cheers,

Jewel

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 9/1/2011 - 6:33pm
Replies by: NYKaren, JerryfromFauq, washoegal, Dynasysman, Anonymous

Hi,

 

I am stage 3c unresectable.

I am concerned that if my doctor prescribes Yervoy for me, my insurance company, Blue Shield Of CA. will not approve it??

Has the FDA approved Yervoy for stage 3C unresectable??? Anyone get approval from their insurance co. for Yervoy that are Stage 3C.

Thank you so much for taking the time to post a reply.

Nancy

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NYKaren's picture
Replies 7
Last reply 9/1/2011 - 9:29pm

Hi, I have an appointment w/Dr. Sznol @ Yale/New Haven tomorrow.  There is a possibility that I will be starting IL-2 on Monday.  I am extremely nervous!

I have read Jane's list of things to bring.  So, 2 cases of water is 48 bottles--divided by 5 days is 9+ bottles a day.  Is it really advised to drink 9 bottles of water a day?

any feedback much appreciated.  thanks,

karen

Don't Stop Believing

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Rocco's picture
Replies 16
Last reply 9/2/2011 - 10:24pm

Six years ago on 8/11/05 I was diagnosed with cancer and told it was mel.  About two weeks later during my 2nd opinion appointment I was told that I was Stage IV.  

Fast forward to Aug 2011 - I received results from my quarterly (August) scans.  Clean brain MRI and clean CT. 

Loving life today!

Rocco, Stage IV since Aug 2005

Luke 1:37

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Terra's picture
Replies 6
Last reply 9/1/2011 - 8:54am

Just wondering if anyone can weigh in on experiences and suggestions - ipi does not seem to be working and we are trying to make a decision between these three treatments.  Time is of the essence as Derek has innumerable mets in both lobes of liver and has had them since last July (2010) although his liver functions are still fine, he also has a tumour behind left eye and increasing soft tissue encasing right aorta, right main pulmonary, and bronchus.

 

Chemo does not make since - on off chance ipi is late responder do not want to kill immune

IL2 - stimulate immune, low chance of response, away from home

TIL - stimulates immune, away from home a shorter time, long time to see if it works

 

Does this make sense?

 

Thank-you in advance

 

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JerryfromFauq's picture
Replies 5
Last reply 9/7/2011 - 8:31pm

http://www.mayoclinicproceedings.com/content/83/7/825.full

A long and very interesting on the state of melanoma investigations.

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

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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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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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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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Angela C's picture
Replies 9
Last reply 4/20/2012 - 12:06am

Hello.

I wanted to post an update for those who may have read my recent posts. I was taken off of the MDX-1106 trial about a month ago as I had more than the 20% tumor growth allowed. A brain MRI at that time also showed a 2-3mm lesion suspicious for a tiny metastasis. I had SRS last Wednesday to treat the spot in the brain. I am scheduled to start Yervoy next week at Loyola with Dr. Clark.

I currently have a tumor in my right adrenal gland. That is the only major thing that we see going on at this time.I have some spots that show up in my lungs, but they have been stable and never biopsied.  So, we are moving on with Yervoy now hoping that it will do the trick and shrink this tumor and kill off any other melanoma cells floating around.

If any of you have started Ipi recently, I'd love to e-mail with you so we can compare notes. =)

~Angela

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

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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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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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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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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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rjcravens's picture
Replies 5
Last reply 9/3/2011 - 8:51am

Restarted interferon last night after having a week and couple days off. Took injection at eight, woke up at midnight with uncontrollable chills and shaking. My legs are killing me this morning and i feel like i have been run over......BUT.....i am going to remain possitive like everyone tells me and i am going to work my 6a to 6p shift today in hopes that i can make a difference in the lives of one of my patients:)

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