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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Erika's picture
Replies 7
Last reply 10/26/2013 - 7:55pm

I just joined this community. My husband was diagnosed with Stage III melanoma 11 years ago, and it progressed to Stage IV brain and skull metastases at two different times. He is alive, and I guess "NED." This is a new word for me. In fact, there is a lot of jargon and abbreviations on this site that I need to look up.

I have what could be called a "good problem," yet it is a problem just the same. How does one make life decisions with a husband who is supposed to have died, but didn't? Is he "normal" now? Or should I stock up on life insurance whenever I can? We did have 2 daughters after his diagnosis, so clearly I didn't just give up on life with him. But I do feel alone. Anyone else out there in a similar situation? I'd love to hear from you.

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Erika's picture
Replies 3
Last reply 9/6/2012 - 1:22pm
Replies by: Sherron

I just joined this community. My husband was diagnosed with Stage III melanoma 11 years ago, and it progressed to Stage IV brain and skull metastases at two different times. He is alive, and I guess "NED." This is a new word for me. In fact, there is a lot of jargon and abbreviations on this site that I need to look up.

I have what could be called a "good problem," yet it is a problem just the same. How does one make life decisions with a husband who is supposed to have died, but didn't? Is he "normal" now? Or should I stock up on life insurance whenever I can? We did have 2 daughters after his diagnosis, so clearly I didn't just give up on life with him. But I do feel alone. Anyone else out there in a similar situation? I'd love to hear from you.

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scrapps's picture
Replies 3
Last reply 9/7/2012 - 8:09pm

Let me start by saying it hass been a crazy 2 weeks. I wass initially diagnsed with metastatic melanoma on 8/22/12. The initial pathology report showed a nodular melanoma with an initial depth of  1.71mm. I was immediately referred to a general surgeon and has a wide excision and SNLB performed 10 days ago. the surgeon only removed a single node due to the dye and the radioactive material not extending beyond that node. The initial path while in the OR was clear in the lymph so I was cloased and sent home. I went for my post-op appointment yesterday and the final path report came in. there was no residual tumor  found in the excision site, but there was a microscopic lesion .4mm found in the single node. The surgeon has  recommended a full lymph node dissection which I have scheduled for next week. I am wondering if this is the right thing to do at this point. I am concerned with the potential side effects from the lymph dissection i.e lymphedema. Any information would be greatly appreciated.

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Replies by: audgator, triciad, Anonymous

I talked with Dr Weber today...had scans etc..I remain stage 4  NED!  2 treatments left in the 30 month trial. I also discussed the possible release of BMS's anti pd-1. He says there is no way its going to go for approval UNTIL phase 2 trials are completed and we are still in phase 1. We have been in phase 1 trials since 2010 at Moffitt and still in phase 1 trials. I told him alot of people are trying to get in to the trials and it doesn't seem fair.

Now perhaps this will benefit some of you all...Dr Weber has opened the trial for resected melanoma to Stage 3 c... he has only 5 slots left in this trial. If you are interested in either trial you can e-mail him at jeffrey.weber@moffitt.org .

Here is that trial http://cancer.gov/clinicaltrials/search/view?cdrid=682183&version=HealthProfessional&protocolsearchid=10185044#AlternateTitle_CDR0000682183

NOW..here is some other good news...he still has slots in the unresected melanoma trial and he is thinking on asking BMS to expand it to include more people....
that trial is
http://cancer.gov/clinicaltrials/search/view?cdrid=682171&version=HealthProfessional&protocolsearchid=10185044#AlternateTitle_CDR0000682171

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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I had a mole removed a few weeks ago and got a call last week that I have early stage melanoma.  The doctor says I just need a wide local excision, which is scheduled for two weeks from now. 

Here is the diagnosis from the pathology report: 

Malignant melanoma, superficial spreading type, clark's level III, maximum extent of penetration 0.89mm, host response intense and focally lichenoid, no associated ulceration, rare mitotic figure.

Microscopic description: This is an atypical pigmented neoplasm with an irregular spread of nevomelanocytes, nests of different size and shape, at the dermoepidermal junction with focal invasion into the dermis.  Individual cells are pleomorphic with a tendency to have loose cohesiveness in nests and for nests to coalesce. There is also single cell migration of cells into the prickle cell layer which consistently is present at the interface.  This lesion yields a trailing effect on both lateral margins.  There is little tendency to maturation as atypical cells extend into the dermis.  The dpeth of penetration is measured at 0.89mm.  The host response is focally lichenoid and intense.  I do not see any ulceration of the surface.  A rare mitotic figure is noted within the dermal nest. 

From what I am finding online it appears I would be stage 1a  or 1b. How would I know whether I should push for the sentinel node biopsy?

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Jamie's picture
Replies 7
Last reply 9/7/2012 - 8:55am

I had pet scan last september'11 which revealed a subcentimeter nodule with suv of 2.5, onc. said watch and wait and have ct scan in december'll to check it, no changes in growth so it was diagnosed as "scar tissue". In mid July'12, pet scan revealed that the nodule was now 2 cm with suv of 9 and onc. sent me to lung surgeon and upper left lobe was removed, tumor was removed and no signs of anything else. We got a call 1 week later saying this was not melanoma mets, but early stage primary lung cancer, which was the better diagnosis, better than melanoma anyways. Anyway, end of Aug. had follow up visit with onc. and he says diagnosis wasNOT conclusive for melanoma OR lung cancer. Samples of the tumor were sent to another hospital and it was "felt" that it was melanoma. We have no 100% diagnosis either way. We (me/wife) were told either way, it was gone and no need for treatment. Can anyone elaborate what is possible, anyone have a similar situation or any advice/comments to share that might shed some light???? I was diagnosed with melanoma in '08 stage 3a, no promlems until now....thanks.....

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frankMill's picture
Replies 10
Last reply 9/11/2012 - 7:40pm

HI Everybody,

3 weeks ago after a workout at the fitness center, I noticed a 1.5 CM lump near my left nipple.  Since then I've been through mammograms (not something most men get the chance to have :), ultra sounds, needle biopsy, PETscan, tumor removal, and SNB under my left arm.  I have new respect and admiration for all of those ladies out there with breast cancer.  When they gave me the 4 shots through the nipple for the SNB with no anesthetic, I about came off the table! OMG!!!

What a whirlwind! The diagnosis was advanced metastatic melanoma.  To say the least, I'm scared and it's hard finding people to relate to.  I'm happy I found this site.

All of my treatments have been at Baptist Hospital in Jacksonville, FL.  They seem to be very competent, but I have a feeling I really need to be in the care of a hospital like Moffit in Tampa.  Nothing against Baptist, but I really need to feel like I'm dealing with the best melanoma specialists possible on this journey.  I have an appointment with Dr. Jeffrey Weber in a couple of days.

Tomorrow I get the results of my SNB and it's really scary.  It seems like every step along the way has another surpise in the wings.  It would be nice to have someone give me a heads up on what's to come.  As an example, what do they do next if the SNB is negative?  What do they do if the SNB is positive?  Do I need to have more lymph nodes removed? Does an anti-angiogenic diet help melanoma patients?  The surgeon tells me the tumor is out and I'm done, but I sincerely doubt that.  I'm sure that I will need some kind of post surgical treatment.  Immunotherapy?

Due to the fact that I had a skin melanoma 4 years ago (it hit me right between the eyes!), this is now classified as a stage IV according to the oncologist.  He thinks I'm very lucky that the PETscan showed no other nodes and my bloodwork looks good.

I apologize for not having mastered the medical jargon, but I'm rapidly learning.  The most important thing is that I can't let myself go to the dark place and be depressed or angry.  I'm ready for battle.  It would be nice hearing from some other warriors that have been through this for support.

Thanks,

Frank 

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aldakota22's picture
Replies 2
Last reply 9/5/2012 - 7:37pm
Replies by: aldakota22, Richard_K

Been following Dicks progress on his trial with Zelboraf.Beleive he is  early  user  and has been on for 39+ months.Been looking for a recent post on his condition.Also have not seen any recent posts by Lisa13.Any info on either would be appreciated.Both are always in my prayers.Beat the Beast.  Al

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Anonymous's picture
Replies 2
Last reply 9/6/2012 - 7:30am
Replies by: Anonymous

Hi everyone,

If you or someone you know has experience dealing with metastatic or unresectable melanoma we would like to learn from you.  We are hoping to speak with both patients and caregivers over the next 2 weeks, to help better understand the complexities of dealing with this devastating disease, in order to create programs and communications that better serve your needs.

If you are able to participate and would feel comfortable discussing this disease with us, please email melanomamr@yahoo.com. Everything discussed will be kept completely confidential and used for research purposes only; we will provide you with compensation for the discussion.  

Thanks! 

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Hi everyone,

If you or someone you know has experience dealing with metastatic or unresectable melanoma we would like to learn from you.  We are hoping to speak with both patients and caregivers over the next 2 weeks, to help better understand the complexities of dealing with this devastating disease, in order to create programs and communications that better serve your needs.

If you are able to participate and would feel comfortable discussing this disease with us, please email melanomamr@yahoo.com. Everything discussed will be kept completely confidential and used for research purposes only; we will provide you with compensation for the discussion.  

Thanks! 

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/5/2012 - 2:00pm
Replies by: natasha, Anonymous, Janner

Hi everyone,

Just yesterday I was diagnosed with malignant melanoma. The pathology report said it was the superficial spreading type, was not ulcerated, had a Breslow thickness of 0.28 mm, Clark's Level of 2, only radial growth phase present (no vertical), and a mitotic rate of 0. Overall, I was diagnosed with T1a. The report then went on to mention that a re-excision of the site with appropriate margins would be necessary. I was wondering what exactly this all means since I have yet to receive a phone call from my doctor explaining everything. Thank you everyone for your help and I hope that everyone is doing well!

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POW's picture
Replies 5
Last reply 9/5/2012 - 11:11pm
Replies by: POW, Anonymous, dellriol, Janner

My brother was suddenly diagnosed with Stage IV MM with numerous brain mets in June. He had WBR in July, which temporarily improved things. He's been taking Zelboraf for 6 weeks, but we don't know yet if it's working. However, he has recently started having memory problems either from the tumors or from the WBR.

For example, yesterday morning he took the medi-van to his doctor's office. The doctor told him to reduce the dose of one of his medications--the doctor even wrote it down. But when the hospice nurse came to my brother's home later in the day, my brother claimed that he had not been to see the doctor that day. He did not tell the nurse about the medication change. Fortunately, the nurse called me and I straightened it out.

I'm sure that my brother is frightened and embarassed by such incidents. He lives with our 90-year-old mother who's not in such great shape herself. So brother has to go most places, including to doctor's appointments, alone.

But I'm sure that many other people with brain mets have had the same experience. Can anyone suggest any strategies or techniques to help my brother compensate for his memory loss? Obviously, keeping a notebook and pen in his pocket at all times is one thing he could do. But I can't seem to think of anything beyond that.

I would appreciate any help you can give us.

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Anonymous's picture
Anonymous
Replies 7
Last reply 9/5/2012 - 9:25pm
Replies by: Anonymous, natasha, POW, Webbie73, deardad

Informal poll - how many of us have had HPV and then melanoma? 

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Based on the data, senior vice president of Global Development and Medical Affairs at Bristol-Myers Squibb Brian Daniels noted that the drugmaker "plan[s] to initiate registrational studies for anti-PD-1 in non-small-cell lung cancer and renal cell carcinoma this year and late 2012, early 2013 for metastatic melanoma." Leerink Swann analysts suggested that PD-1 inhibitors such as BMS-936558, which Bristol-Myers Squibb is developing with Ono Pharmaceutical, "could be the most exciting clinical and commercial opportunity in oncology," partly because such drugs might be able to treat a variety of cancers. Other companies developing compounds that work by similar mechanisms include GlaxoSmithKline, Merck & Co., Roche and Teva.

http://www.firstwordplus.com/Fws.do?articleid=2A61789AB2FB4D9EBE51BD7CB230F954&src=corp_site

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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jfro's picture
Replies 1
Last reply 9/4/2012 - 11:33pm
Replies by: Janner

Okay, Janner, I just need you to talk to me down a minute.

I really tried not to "research" after what you told me. However, I failed. Do you know anything about Nevoid Melanoma? I read that it often can be misdiagnosed as an Intraderman Nevus. You seem quite knowledgeable and was wondering if you knew anything about this rare type? I am really trying to trust my path report until I see my doctor next week but only having a shave biopsy concerns me!

Thanks again!

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