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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randallgford's picture
Replies 2
Last reply 3/23/2013 - 11:16am
Replies by: randallgford, Janet Lee

Randall started Yervoy two weeks ago after lung biopsy, CT and PET scan showed tumors on lungs,

abdomen, two small ones on liver, and spine. Brain MRI was inconclusive, decided to do a double contrast

MRI. Well the result is 5 apparent lesions, we are doing cyberknife by next week if another MRI can be 

scheduled, then a day to plan it (?) I got the impression from reading on this board they mainly do cyberknife

for brain. Why not for lungs/spine etc.? Just curious. I guess its more wait and see, some respond, some don't.

I am having a hard time with what to tell my daughter she is 20, across the state, a junior in college and doing

great with grades, a job, and an internship. Very busy and focused. We went there and told her about the cancer returning,

but at that point we only knew it was in the lung (after the biopsy) and we pretty much assured her he would get

get treatment and beat it. I feel like Im not being truthful, she is coming home next weekend for Easter and I have

to figure out what if anything, else to say. Randall doesnt want to stress her out. He still feels decent and goes to work.

Mostly I try to think positive, but this is serious  especially with the brain involvement.

Never give up!

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Janet Lee's picture
Replies 8
Last reply 3/22/2013 - 9:59pm

I posted the following in a thread started by POW regarding insurance paying for Zelboraf for non-V600E BRAF mutations such as BRAF V600R. I hope it's ok to post it again as its own topic, as I want to make sure people see this update.

First, thank you so much to POW for her help in this nightmare of trying to get Zelboraf covered by our insurance company. And eternal thanks to everyone on this website for their insight, knowledge, help, and understanding.

I can understand the FDA originally approving Zelboraf for the BRAF V600E -- after all, the vast majority of BRAF murtations are V600E and it makes sense to concentrate on that group. However, 19 months after the inital approval, shouldn't there be something more to offer for the BRAF mutations OTHER than V600E? My husband Don is V600R.

We have appealed three times to our insurance company; the last appeal was even supported by our Congressman from central Massachusetts, Jim McGovern. Even that was denied -- as "not being medically necessary." At their request, we are sending more information to the Office of Personnel Management in Washington, DC to prove that Don is BRAF positive and is being treated for metastic melanoma. In all honesty, I do believe we are dealing with idiots.

In the meantime, mainly through the efforts of Dana Farber, Genentech has agreed to provide Zelboraf to my husband, Don, and he took his first dose at 11:55 a.m. yesterday. (YAY!) Interestingly, even Genentech has in essence tied its own hands and is subject to strict overisght by the FDA in what it does with Zelboraf, and they were not "free" to simply give it to a patient that did NOT have the V600E BRAF mutation. Dana Farber supplied an enormous amount of information to Genentech for them to even consdier giving the drug to Don, including the "Australian" paper from December of 2012 citing exciting positive results for V600R patients.

The other side of the story with Genentech is that Don and I had to "prove" that we were beneath a certain income threshhold. It seems that, if your combined household income is above $100,000 per year, you are not worth helping. If your household income is $99,000 or less, it seems that your life is worthy of help. With Don's illness, he has been unable to work since Christmas; I am not working so that I can help take care of him. So I had to provide "proof" that our income would be below $100,000 in 2013. That may sound like a lot of money to many people, but we are two professionals who have worked for over 40 years to reach this level and have planned for a contented retirement together.

We are continuing our fight with the BC/BS Federal Employee Plan. I honestly believe that the mission of insurance companies is to figure out a way to NOT pay your claim. I believe the bureaucrats put on their blinders and see "V600E" and nothing else.

Don's disease is quite advanced, and I know that waiting these past 6 weeks for a systemic treatment has been detrimental to his overall status. We pray that the Zelboraf will give him some relief from his pain and give us some quality time together.

Until Genentech came through this week with the Zelboraf for Don, Tim Turnham of MRF was unbelievable in his help in getting us into the pipeline for a Glaxo Smith Kline compassionate care use of Dabrafenib. According to Tim, GSK actually wants to use the Dabrafenib on rare BRAF mutations. Because of Dons advanced disease, we really had no choice but to start the Zelboraf rather than wait even a few more days or weeks for the Dabraneib.

I know this post is long, but I have not really had the time to post recently. Don had to have his brain met surgically removed (cyberknife was ineffective -- and his brain met brew larger and was affecting him dramatically) and he is now in rehab. We believe tumors are now impinging on his lower spinal column, so the Zelboraf is desperately needed.

Thanks again to you all, who give me hope and support!

Janet Lee 

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_Paul_'s picture
Replies 1
Last reply 3/22/2013 - 7:19pm
Replies by: washoegal

I just got the call from my derm that what presented as a small blue nevus in my excision site is likely a recurrence. Apparently the pathologist could not say for sure that is was melanoma, but there are enough characteristics coupled with my history that his official report is that it is a recurrance. I am waiting to receive a copy of the actual report and a copy is on its way to my melanoma Dr. at SCCA in Seattle.

Will they likely want to do another excision? The tissue at the primary site is to thin I think they would have to graft. But a graft was not an option last time because the skull had been opened for so long that the blood supply died. Anybody been through anything similar?

 

Thanks - Paul.

To exist is beyond fantastic.

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A melanoma group in Canada is hosting a survey to gather data in advance of encouraging coverage of Dabrafenib.  If you have an interest in melanoma and live in Canada you may want to participate in the survey:

http://survey.constantcontact.com/survey/a07e74hy2tphdq1lhit/start

 

Tim--MRF

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kkhalsten's picture
Replies 7
Last reply 3/22/2013 - 1:04pm

Well, 7 weeks (1/31) after my lumphodenectomy on left groin area-

3/16 found a small marble size lump on excision- went to the oncologist yesterday- wasn't happy about the measurement, location, and feel of the lump. Now, scheduled for ct scan and from there biopsy. I won't stress until results come back-

The cancer center I'm attending offers chemo, interferon, for stage III (preventive) ..since I'm high risk with my groin lymph node reoccurrence- they did offer me interferon or chemo, but oncologist commented that those treatments have been around for years and they don't really work...thought this was strange..

Now, that I may be facing surgery again...I'm thinking of what the best treatment option would be....no chance to travel to MD Anderson or other places due to insurance/financial reasons. I'm going to have to work with the options/docs/info I have at the cancer center I'm at right now.

Question- do people choose treatment after reoccurrence although pathology is NED? If this more of a preventive option in case mel. cells are traveling through body and unseen on scans? Or do people only choose treatment when results are showing 1 or more nodes are diseased?

I understand these are novice questions- be easy on me.wink

 

 

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aldakota22's picture
Replies 11
Last reply 3/22/2013 - 9:16am

Sunday evening marked my 1 1/2 year  anniversry on "Z".Proving that there is a fighting chance to live with stage IV.Keping my PMA that this is only a small milestone.My posts here have been to offer hope to fellow fighters.My side affects have been tolerable,with the worst being bouts of the runs and gas.Scans in Feb still show almost at the NED status but officially not there yet.An area of concern did show up on brain MRI but the doc is waching closely with another scan in mid April.The other issue of concern is a low iron count.No real explanation as after a colonostopy & endoscopy revealed I have Acid Reflux Disease which did thicken the esopaghus.On iron supplement and a acid reflux med.I pray that with all the new research that very soon all of us here will find the right treatment to collect our Entitlement (Social Security-something we paid for) for a very long time.With Gods help and todays medicine we will all Beat the Beast . AL                                                                                                                                                                                                                        

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audgator's picture
Replies 5
Last reply 3/21/2013 - 3:27pm

 

About a year and a half ago I had a very low moment in a Publix Supermarket.   I had just finished the complete course of treatment with ipi.  At the follow-up scans we discovered that I had not responded and my mets had grown larger.  A few weeks later I was at the deli counter in Publix next to a young man who reminded me of my son: about the same age, similar height, same beginnings of male-pattern-baldness.  He was holding an infant a few months old.  It struck me that I may not live to see granchildren.   I teared up and almost broke down right there in front of the mortadella.  This afternoon, my daughter-in-law delivered a 7 pound, 5 ounce grandson who I expect to see graduate from high school.  Thank you researchers, BMS, Moffitt, all my doctors, nurses & techs, and of course my newly-expanded family.  And all of you.         Dan

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Kudos to the MRF for last weekend's volunteer summit in DC. The sessions were lively, informative and well targeted. It was an emotionally charged weekend listening to many people's stories. I came away with renewed hope and fully energized to continue spreading the word about melanoma. If you missed this event, please consider registering for MRF's Legislative Day on the Hill on May 14 in DC. You can get the details about it and all MRF volunteer opportunities on their homepage, www.melanoma.org. I finally feel like I have started to fulfill the promise I made to myself when I survived longer than expected and it feels really good. Please know I keep everyone dealing with melanoma close to my heart and always in my thoughts. Keep fighting the beast!

I have melanoma but melanoma does not have me!

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miswod's picture
Replies 2
Last reply 3/21/2013 - 9:44am
Replies by: Janner, natasha

My wife has recently had one of these removed and awaited results from our local hospital.  She has been given another appointment and been told this may require further treatment and they want to discuss options.

She has convinced herself that this means the mole is cancerous. I have been saying that it is probably standard procedure to give her advice and maybe check the wound etc.

Does anyone have experience of how the NHS in the UK proceeds following an excision of such a mole?

I am just trying to establish if this follow up appointment could just be routine or not (it's 6 weeks away!). Obviously, it may be bad news but not necessarily.

Any information would be appreciated.

 

Miswod

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My husband has stage 4 ALM and we are looking for others with this rare melanoma to compare info and treatment by writing to my email maureen038@aol.com. He is negative in the mutations BRAF,NRAS, and c-kit, but is being tested for c- kit expression which can be positive even if its negative for c-kit mutation. He had a 1 cm lung nodule removed in October by Dr. Yang at Hopkins, but now has a 4 mm lung nodule in the other lung. It was 2 mm in January. We are waiting to hear from Dr. Yang for his opinion. Any suggestions are welcomed. Thank you for any help!

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My husband has stage 4 ALM and we are looking for others with this rare melanoma to compare info and treatment by writing to my email maureen038@aol.com. He is negative in the mutations BRAF,NRAS, and c-kit, but is being tested for c- kit expression which can be positive even if its negative for c-kit mutation. He had a 1 cm lung nodule removed in October by Dr. Yang at Hopkins, but now has a 4 mm lung nodule in the other lung. It was 2 mm in January. We are waiting to hear from Dr. Yang for his opinion. Any suggestions are welcomed. Thank you for any help!

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vicuk's picture
Replies 2
Last reply 3/20/2013 - 6:58pm
Replies by: NYKaren, Fen

Helen went for her scan last week and the trial drugs (dabrafenib and trametinib) are still working. Lung mets still too small to be measured and hip tumour decreased in size again! So relieved.

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bj63's picture
Replies 5
Last reply 3/20/2013 - 5:13pm

Hi all:

I've recently created a profile if you're interested in any background info.

I've been on Zelboraf since November, with good results overall.  However, I'm now seeing a lot of new small, dark moles - like my arms and particularly my legs have been sprinkled with pepper.  This in spite of the fact that my last PET scan showed dormant tumors and no glucose activity.

Anybody else  on Zelboraf seen this?  I'm scheduled to see a dermatologist next week.

BJ

Sometimes no news is the best news!

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/20/2013 - 3:21pm
Replies by: Janner

Hi everyone!  I know there is a good chance that nobody will know for sure, but I am really curious for opinions.

I am 21 years old and I am a bit of a hypochondriac.  I have a variety of moles on my body and I have had them since I was a child.  I have always had this mole on my forearm, right below where the crease is where my arm bends.  It is a teeny tiny bit raised.  It appears to be the same size that it always was, except I noticed a dark dot on the right-hand side of the mole.  To be honest, I am not sure if this is new or not.  The mole has always been dark but the dot looks even darker than the mole itself.

Here is what it looks like:

http://oi45.tinypic.com/180hs2.jpg

It is not very big.  It is nowhere near the size of a pencil eraser, which I heard is used to test the "diameter" part of the ABCDE test.

I can't decide whether it's worth it to go to the doctor or not, or just wait to see if it changes.  Three people on both sides of my family have had skin cancer, but at much older ages than where I am - triple my age at least.  I am only in the sun really in the summer and even that's not much.  I know I would have to go to the doctor and then get a referral for a dermatologist.  There is a good chance they might not be taking any new patients.

Opinions?  Thank you so much!

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Hello everyone,

I am a dark skinned person, Indian. I thought Melanoma only affects people with lighter skin.
But I recently educated myself that it is not the case.

I was concerned about a mole or a red patch that was under the foot, sole of my foot. I vaguely remember seeing it a long time ago as a single red spot, it didn't pain or anything so I left it.

Recently after I got to know about Melanoma and its ABCDE, I looked at this patch which seemed to fit well with Melanoma diagnosis. I once showed this to a doctor, at that time he said it is probably a broken blood vessel it doesn't look like a mole, just ignore it but keep an eye on it.

This is making me paranoid that it has irregular edges, but it is completely flat. It is not raised and it is over 6mm. 

I am posting the pictures and links here, if anyone can give an insight it would be nice. 

 

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