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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Anonymous's picture
Replies 7
Last reply 9/24/2013 - 5:44pm
Replies by: JerryfromFauq, POW, Momrn5

Good Morning,

Yesterday, I tried the the "private message" function on the new website. I sent ouy a few "private" messages and have received NO responsed back.

Yes, maybe the MPIP members did not want to repy to my message.

HOWEVER< can anyone VERIFY the private message function is working with the new website.

Thanks for your help.

Josie

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jogo's picture
Replies 3
Last reply 9/24/2013 - 3:14pm
Replies by: JerryfromFauq, jogo, Momrn5

This is all happening very quickly for me.  I felt a lump on the left side of my face May 6th.  June 6th, I had a total left parotidectomy and radical disection of the the lymph nodes/glands of the left side of my neck.  The primary melanoma was never located nor identified.  After testing and randomization, my first infusion was July 30th.  I had 2 infusions of ipilimumab and had diarreah for a few days before I was to have my 3rd infusion.  It [diarreah] stopped after 2 days of Budesonide and Imodium.  It [diarreah] resumed three days later, the weekend before my rescheduled [3rd] infusion.  I also had a temperarure of 101.7 F.  I was hospitalized.   A colonoscopy confirmed ipilimummab induced colotis.  I'm on a steroid regemin [Prednisone starting 120 mg and tapering].  The oncology team told me I will remain in the clinical trial but will not be resuming the infusions. I had just 2 infusions of 3 mg/ Kg body weight.   I am now dealing with colotis.   It's been a five month roller coater ride.  The half full glass theory is that my immune system has been activated.  Now it needs direction.

My father died of metastic melanoma January 1989.  I turned 71 this past March.  I joined the clinical trial [E 1609] for my dad, my daughters, and my grandchildren.]

.

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eddiealmost's picture
Replies 8
Last reply 9/22/2013 - 5:34am
Replies by: eddiealmost, Janner

I have dysplastic nevi syndrome with 100's if moles, at least 15 moderate dysplastic, and 2 recent severe dysplastic.

My derm used a scalpel to dee a very deep cutting of the severe dysplastic mole, not a complete excision. She went very deep!!! There was no brown skin left (I am white) and the removed lesion had a lot of normal looking skin attached to it.

The margins came back as not clear and the derm did a wide complete excision down to the muscle.

The severe dysplastic mole was growing down into the skin, not staying on the surface.

Can moles grow vertically and still be benign??? Does this also mean that th atypical cells can grow in I pigmented cells??

I am glad that it was not a melanoma, but am concerned that hey might have made a mistake considering how deep it grew.

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JoshF's picture
Replies 19
Last reply 9/26/2013 - 12:29pm

Hello fellow warriors!!! I'm in a really bad place and need to hear positive stories from some of you. If you've read my bio and/or recent posts you know that I just had 2 lesions remvoed from under scar from previous surgery for melanoma. I was told just weeks ago for 6 month check up that all was great and they didn't want to scan anymore and I was single digit chance of recurrence. Now I'm facing more surgery which is fine but I'm consumed with anxiety and fear that it has spread beyond local area (cheek). Since it's on my face/head I keep wondering if it got to brain and I don't know it. Bloodwork for LDH was great 2 weeks ago but I've heard that's useless...and I was seeing melanoma specialists? I'm baffled by the lackadasical approach to my surveillance. I saw Dr Kaufman at Rush until fall of last year when he dropped my insurance. I had scans in June/July 2012 as well as Brain MRI which was good. Then I had scans of neck down to pelvis in Feb of this year...all good! Would've had scans a few weeks ago but as I mentioned previously, onc didn't think they were necessary. WTF!!!!!

Please, some of you tell your stories of good news and hope. I've been on this site for over 2 years and sit in background, follow many of you and pray for all. I typically stay very private but it's harder the 2nd time around for me and I can't understand why. I'm not pessimistic and will fight this beast with all I got but right now I'm broken and not afraid to admit it. I know many of you have been through alot and I appreciate your courage & strength...Charlie S, Jerry from Fauq, Matt F, Gene S, Lauri England, Andrea Heitker and so many more....

I wish you all the best in your battle! For those that are NED....STAY THAT WAY!!!! Don't forget you're the best advocate you have in your fight.

 

Josh

Let's work for better treatments....for a cure!!!!

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JoshF's picture
Replies 6
Last reply 9/25/2013 - 1:48am
Replies by: MattF, Janner, JoshF

Well I got the results just a bit ago. The two lesions were both melanoma...7mm & 4mm. I asked if they were nodes, he said that path didn't state that. I'm baffled as I just had CT Scan...blood work etc... which was all good. Now I need another PET/CT and surgery....what are chances of spread...I'm devastated.

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Replies 7
Last reply 9/22/2013 - 2:11pm
Replies by: Anonymous, POW, Janner

Hi,

I am a senior citizen and get confused when it comes to computer things.

With the old website you could go to the profile page of the MPIP member and you were able to email the member using the website form.

I have looked on the profile pages and I cannot determine how I can send a "private" message to the member.

Please tell me how to contact MPIP members via their profile page or any other way.

Thank You

Josie

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carpediemtr's picture
Replies 14
Last reply 11/24/2013 - 10:14pm

Hello. I just found this site recently after that Metastatic Melonoma was diagnosed on my brother (lungs) at second half of July 2013.

First he started to take temodar in August and completed first cycle. Then, according to positive braf result, he started to take Zelboraf last Thursday (12th of Sep.)

After about 4 or five days, allergic reactions started to happen on his body. Then yesterday, his hands, face, neck all became red and we diagnosed rash on his upper body. Then, today rashes diffused all over his body. Also he has fever and nausea today.

After communication with our oncologist (but he hadn't worked with any braf patient until my brother), he suggested to stop medicine. On the other hand, we asked for advice of another oncologist who study about Zelboraf, stated that if we see this kind of side effects, it would mean that Zelboraf is effective on melanoma and suggests not to stop, but maybe reduce the dose.

So now we have a dilemma about the decision. Has anybody experienced the same side effects here? And what was the solution? If these effects continue and grow, should we stop the Zelboraf and will not take again? Could you please help us? We need your urgent advice.

Thank you in advance.

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JoshF's picture
Replies 2
Last reply 9/19/2013 - 9:36pm
Replies by: JoshF, casagrayson

Hi All-

 

I'm anxiously awaiting pathology results from excisional biopsy I had on my right cheek Tuesday. There were some small lump under scar. Doc took out 2 masses one 7mm the other 4mm. He said he thought they were lymph nodes. I have seem many posts abput reoccurrence in parotid gland and lymph nodes in neck but not in cheek. Anyone have any insight or knowledge of this? Also are the lymph nodes big? The lump was movable and slightly tender when I would move it around but not painful. I just can't find much on this and I'm going crazy. Just keep getting bad feeling about this.

 

Josh

Let's work for better treatments....for a cure!!!!

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MattF's picture
Replies 4
Last reply 9/24/2013 - 5:05pm
Replies by: JerryfromFauq, GAngel, JoshF, POW

So I met with the Chief of Head & neck Surgery at City Of Hope. They actually scheduled everything during this appointment...pre op, surgery and follow on appt with Radiation Oncologist and Melanoma Oncologist.

Surgery, Parotidectomy and Lymph Node Dissection for 2 Masses of metastatic melanoma in my salivary glands is scheduled for next Wed.

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MaryD's picture
Replies 11
Last reply 9/25/2013 - 12:39am

This coming January, 2014, it will be 13 years since I was first diagnosed with melanoma on my upper left arms.  Five recurrrences, including progression to stage IV in 2007 via a solitary lung nodule, and five treatments later including interferon, radiation, peptide vaccines, Ipilumimab, and pulsed IL2, I am happy to say that today, I reached the milestone of being free of disease for 5 years.

There was a time I could have never imagined reaching this point but with the help of some wonderful health care professionals that have supported me along this journey including Drs Jai Balkissoon, Jeffrey Weber, and David Minor,  I am here to validate that there is hope!

But without a doubt, this MPIP family was the greatest source of support throughout the years providing invaluable information, education, and friendships that will last a lifetime.

Please know there is hope - we have more ammunition to fight melanoma than ever before and there are more and more long term survivors out there.

Mary

 

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Landslide45's picture
Replies 2
Last reply 9/19/2013 - 4:03pm

I have a side effect question for the group. My Dad (stage IV) has had mild neuropathy off and on since beginning interferon treatment last summer. He is now in a 3mg clinical trial of Ipilimumab, and this week (he is between his 2nd and 3rd doses) the neuropathy has gotten severe and made it very difficult for him to walk. He is having a brain MRI tomorrow but in the meantime we are anxious to know if folks have had similar experiences and how likely this might be a treatment side effect vs being tumor-related.

Anyone have any thoughts or advice? Anyone have tips on how to handle neuropathy symptoms?  Thanks in advance--this board has been a major source of hope and knowledge for our family as we try to fight this nasty disease!

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sbrooks90's picture
Replies 5
Last reply 9/20/2013 - 9:01pm

Hi Guys,

Just wanted to get a sense of what treatment options are out there for Stage III (Besides IFN-a). I had my CLND last week and am waiting for the results on that so I can be properly staged. Has anyone had experience with radiation? My surgical oncologist said that is an option if 3 or more lymph nodes are positive. I know a lot of these treatments are in clinical trials but would like to see what other people have gone through. This board is full really smart individuals!

 

Thanks,

Samuel

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Rebecca and Bob's picture
Replies 9
Last reply 9/18/2013 - 5:04pm
Replies by: NYKaren, HopefulOne, JoshF, Rebecca and Bob, Anonymous, POW, sbrooks90

We had a scare today with scans. The doctors thought that a spot on my husband's spine might be melanoma so we had to do another scan MRI of the back to check it closer. It ended up being inflamation. We were so relieved words cannot even express it. My husband progressed to stage IV when our kids were 1 and 3 years old. Here we are 7 years later, 3 of those years spent working towards NED. This has been such an emotional roller coaster ride, but we are thankful each day that we have enjoyed and spent doing things with the kids and that he is here for them.

I just wanted to share some good news.

Rebecca

Believe

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d0771's picture
Replies 2
Last reply 9/17/2013 - 10:12pm
Replies by: d0771, Janner

I have looked up all the terms, and have a general idea of what it means, and also asked my derm to translate into plain english, but would still like the thoughts of those on the board who have gone through this as well.  

 

Final Microscopic Diagnosis:

A. Left lateral back, Punch Biopsy:

Melanoma In Situ arising in association with an intradermal nevus, extending to lateral margins.

 

Comment:  Sections show a central melanocytic proliferation of maturing and small dermal melanocytes.  In the overlying epidermis, adjacent to the dome of the nevus there is an asymmetric and poorly circumscribed intraepidermal melanocyctic proliferation.  The lesion desplays confluent melanocytes with marked cytologic atypia and pagetold scatter.  In a focus confluent atypical melanocytes extend far down along an adnexal structure.  The lesion is present on sun-damaged skin.

MART-1 and MITF Immunostains support the above findings.  Initial and level sections were examined.  The above findings represent the consensus opinion of the dermatopathologists present at the daily case conference.

 

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How many more mutations to be found in the  30% of melanoma's that they don't know what mutation has occurred  in?

http://news.harvard.edu/gazette/story/2013/01/mutations-drive-malignant-...

Mutations drive malignant melanoma
Discoveries found in 'dark matter' of cancer genome

By Bill Schaller , Dana-Farber Cancer Institute Communications

Two mutations that collectively occur in 71 percent of malignant melanoma tumors have been discovered in what scientists call the “dark matter” of the cancer genome, where cancer-related mutations haven’t been previously found.

Reporting their findings in the Jan. 24 issue of Science Express, Harvard Medical School (HMS) researchers at the Dana-Farber Cancer Institute and researchers at the Broad Institute said the highly “recurrent” mutations — occurring in the tumors of many people — may be the most common mutations in melanoma cells found to date.

The researchers said these cancer-associated mutations are the first to be discovered in the vast regions of DNA in cancer cells that do not contain genetic instructions for making proteins. The mutations are located in non-protein-coding DNA that regulates the activity of genes.

This non-coding DNA, much of which was previously dismissed as “junk,” accounts for 99 percent of a cell’s genome. A large number of oncogenic mutations in cancer have been identified in the past several decades, but all have been found within the actual genetic blueprints for proteins.

“This new finding represents an initial foray into the ‘dark matter’ of the cancer genome,” said Levi Garraway, HMS associate professor of medicine and the article’s senior author.

“In addition, this represents the discovery of two of the most prevalent melanoma gene mutations. Considered as a whole, these two TERT promoter mutations are even more common than BRAF mutations in melanoma. Altogether, this discovery could cause us to think more creatively about the possible benefits of targeting TERT in cancer treatment or prevention,” Garraway said.

The mutations affect a promoter region — a stretch of DNA code that regulates the expression of a gene — adjacent to the TERT gene. TERT contains the recipe for making telomerase reverse transcriptase, an enzyme that can make cells virtually immortal, and is often found overexpressed in cancer cells. A promoter region of DNA controls the rate of a gene’s transcription — the copying of its DNA recipe into a message used by the cell to manufacture a protein.

“We think these mutations in the promoter region are potentially one way the TERT gene can be activated,” said Franklin Huang, an HMS clinical fellow in medicine and co-first author of the report along with Harvard M.D.-Ph.D. student Eran Hodis.

To investigate the mutation’s effect, the researchers hooked the mutant TERT promoter to a gene that makes luciferase, a light-emitting protein. They observed that the mutant promoter increased the production of luciferase in laboratory cell lines. In the same way, the scientists presume, the mutant promoter in human pigmented skin cells can send the TERT gene into overdrive, potentially contributing to the development of melanoma.

The mutations were discovered when the scientists sifted through data from whole-genome sequencing of malignant melanoma tumors. Unlike “whole-exome” searches that examine only the protein-coding DNA of a cell’s genome, whole-genome searches scan all the DNA, including the non-coding regions.

In analyzing whole-genome data, the investigators discovered the two somatic, or not-inherited, mutations in 17 of 19 (89 percent) of the tumors. Next, they sequenced a larger number of melanoma tumors and found that the two mutations were present in 71 percent of tumors in total.

The researchers said the same mutations are present in cell lines from some other malignancies, and that preliminary evidence showed they might be unusually common in bladder and liver cancers. They also noted that the discovery of these important mutations in DNA previously not linked to cancer-causing alterations highlights the value of whole-genome searches of tumor DNA.

Other authors include Mary Jue Xu, a student at Harvard Medical School; Gregory V. Kryukov of the Broad; and Lynda Chin of MD Anderson Cancer Center.

The research was supported in part by the National Institutes of Health, the Mittelman Family Fellowship, the American Cancer Society, the Novartis Institutes for Biomedical Research, the Melanoma Research Alliance, and the Starr Cancer Consortium.

This article was adapted from a Dana-Farber Cancer Institute news release.

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

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