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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Replies by: POW, 5374brian, Tim--MRF

What a roller coaster ride my wife has been on since since April 29th. We elected surgery on April 29th which the surgeons and oncologist recommended Hospice care after being in Moffitt for 10 days of recovery. We returned home with Hospice care and pain management. We were told to make it to June 10 and with a good MRI and no more surgeries we could start the Merks - 3457 trial. The good news is MRI was good all prior mets are responding good to the WBR that she finished while recovering from surgery in hospital. We came home scared and felt beaten but we kept looking forward to 6/10.  First visit for vitals and blood work was 6/11 and now we are waiting on a call for her first infusion. With little side effects from the IPI we are told she should have just as little from the trial. Does anyone have news on how the Merk 3457 trial is going? 

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aldakota22's picture
Replies 15
Last reply 8/29/2013 - 6:15pm

  Does anyone have any info on Kellygirl,  or  Dick_K ? Have not seen  any  posts in quite awhile. Pray and hope all is well. Thanks.  Beat the Beast.   Al

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hawaii marcus's picture
Replies 11
Last reply 7/18/2013 - 4:21pm


I'm a new Nasal Mucosal Melanoma patient. Disease free 3 months out after 2 sinus surgeries. Currently undergoing 30 treatments of radiation.

Any other Nasal Mucosal Melanoma patients in here? I know it is rare, and I have done my research on it.

I am hoping to be in the 25% that survive 5 years or more. 4 years and 9 months to go to prove it!


Live life and enjoy what you have!




my story ~~~

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flvermonter's picture
Replies 1
Last reply 6/12/2013 - 7:07pm
Replies by: POW

Hi Again,


My husband's notes were on Moffit from his removal of all lymph nodes last week.  This is what Dr Zager had noted:

"  The patient had extensive bulky adenopathy with desease overlying the subcapularis muslce and involving latissimus muscle.  We did take a portiono f his latissimus  uscle and sent a soft tissue nodle for frozen scetion, which came back as positive for metastatc melanoma.

... He had melanoma metastases in soft tissue nodeuls medially and inferiorly to the axillary vein as well. We cleared out the Rotter's nodal basin as well with the help of electrocautery, and we used medium hemoclips on any small lympovascular pedicles.   We then divided the contrents between lels 1 and 2.  He had extensive level 3 disease both in the floor of level 3 as well as in the apex of level 3 and immediately posterior to the axillary vein.  We carefully dissected all these contents our of leve 3.   We passed level 3 contents off the table as a separate specimen."

Dr Zager also said he was stage iiic melanoma and I said you said that before the surgery.  he said well he must have meant stage iiib, as he is definitly stage iiic now and prognosis is fair.  What does "fair" mean?  I know it is less than good, and better than bad, but can you give more definition?  Dr Zager met with me after the surgery and said my husband had "alot" of disease and that he thought he should not have the lung surgery and would talk with Dr Toloza.  6 days later, the lung surgery has been cancelled and we got a call today for an appointment on 6/26 with DR Dilling at Moffit, a thorasic Onc for radiation.


What are your thoughts on the melanoma notes from the doctor?  Obviously, I know it is dangerous, but in english what does this mean. 


Thanks, Mary

Hugs to all, patients and care givers.

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Anonymous's picture
Replies 6
Last reply 6/12/2013 - 11:32pm
Replies by: Kong-Gee, Newmom, Anonymous, Janner


My husband got diagnosed with "lentigo maligna" from a punch biopsy.

After a wide local excision, the final diagnosis is "lentigo malignant melanoma". The pathology report says clark level 1 with all the cells confined to the epidermis but our doctor says it is not "in situ", but a thin lentigo malignant melanoma, with high metastatic potential. One doctor says it is the same result as the punch biopsy, and another doctor says it is not the same. Another doctor says pretty much all the white people have one of those on their face. They all seem to be confused and now fed up with my questions.

I have spent huge amount of time searching on the internet, but I can't find out what it means. We live in Korea where melanoma is very rare, especially the lentigo maligna melanoma. No doctor seems to have any experience in this particular area.

Is there a way to have our slides reread and get an expert opinion on this, possibly in Australia or in the United States? preferably without having to fly there? (We have nobody to take care of our 4 year old) We are not citizens of either one of the countries...

Thank you very much in advance.

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Anonymous's picture
Replies 12
Last reply 7/10/2013 - 11:02am

I had a mole removed in 2005 from my calf. Last year I found a lump near my knee - had wide excision done. December I had a clear PET scan then in March found a lump under surgical scar on leg. Monday I start interferon..worried what this journey will be like.

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Tennisgrl's picture
Replies 2
Last reply 6/12/2013 - 7:15pm
Replies by: POW, Swanee

Went from feeling fine, on treadmill & working with high energy , to a sudden lack of energy.
Yavoy 4 treatments.
On Taxol / Carboplatin 15 treatments , now at 6 week intervals.

Any suggestions?

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DeniseK's picture
Replies 31
Last reply 6/20/2013 - 10:06am

Hello Everyone,

I just got back from my Radioloy Oncologist from my first round of SRS.  The Dr. pulled me into the office prior to treatment and told me we are not fighting just one brain met anymore, we are fighting 7.  There are only 2 that are big enough, 1cm and 12mm, that we can target at this time.  The rest are 4-5mm at this time or smaller.

I'm getting a PET scan done this Thursday to see if the Z has stopped working or maybe it's just not working on my brain.  I was planning on going to see my specialist and hopefully get into some trials but now that's out once again.  Now I will be seeing him to figure out what my next plan of action will be.  IPI? Braf + Mek? Temador?  I know there are others out there with the same situation, can anyone offer any advice or tell me a success story, I'm feeling really deflated.  My daughters wedding is March 2014 and I don't know if I'm gonna make it.  It was just 2 months ago that I only had the one brain lesion and now I have 7, seems like it's getting pretty agressive.  I won't know the status of the rest of my body until probably next week.  Uugghh!!  I was really hoping Z was gonna work.

Any help will help!!



Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Hi All,

Dr. Schuchter and Dr. Fecher will provide callers with a recap of the 2013 American Society of Clinical OAs you may have heard, there was a great deal of very exciting melanoma research news announced at last weekend's ASCO annual conference. Please join the MRF on Thursday, June 13th from 4-5pm EDT as Dr. Lynn Schuchter and Dr. Leslie Fecher provide a recap of the latest on melanoma treatment options, clinical trials and research.  Call information can be found on the event page.  Please be sure to register!

Shelby - MRF

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Cindy VT's picture
Replies 1
Last reply 6/11/2013 - 8:31pm
Replies by: aldakota22

I know I have been dealing with this disease since 1984, but there are some things long term that come along with it.

One of them is fluid around the heart and lungs.  This weekend I awoke to incredible pain in my back and then the next day Sunday it went around my chest and I could hardly sit back .  I take of all things a gout medicine for this because I'm allergic to all NSIDS.  I talk to my doctor to tell him I would be taking the medicine.  He thought I should come in, but I know if I come in I'm going in to the big House and the last time I was there it was a nightmare.  The big house being the Hospital.  It was so bad last September when I had a heart attack, after 5 days I had my daughter come pick me  up and check me out.  So....I try to deal with things at home. 

Now I am having a reaction to the medicine.  Its called (my spelling is not good) Chochisin.  (I think that is right).  Next week is my 27 year old daughter's wedding.  What a time to get sick.  Oh well if the pain gets bad enough I guess I'll have to go to the big house.  I'm praying I just get better. 


Cindy VT

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Anonymous's picture
Replies 11
Last reply 4/23/2014 - 7:44pm
Replies by: MoCedar, Anonymous, mbaelaporte, POW, aldakota22, G-Samsa, Cindy VT

Since being diagnosed with Stage 4 I’ve continued to work full time (only taking time off for surgery).  Recently my work stress has been increasing (meaning long hours at work, major projects, travel, etc).  While my health anxiety seems to be ok right now, my work anxiety is higher than ever!  I worry that this could have a negative effect on my health (currently in clinical trial). 

I am going to reach out to my medical team to get their advice (the nurse and counselor) about how folks handle it but wanted to hear folks thoughts on the process.

1.       I may see about reduced hours or work from home ½ time?

2.       I have short term disability I could see about taking (if my doctor is in agreement)

3.       OR look at applying for social security disability.  But that leaves me with LOTS more questions:

a.       What steps need to be done to apply for this? 

b.      How long does it take before it would start?

c.       What about insurance?  I worry about this since I have a good job/benefits which is why I put up with the work stress… but it’s just getting to be too much!  Would I be better off with a no-stress job? 

Any thoughts/guidance folks have would be appreciated! "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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LesleyKS's picture
Replies 5
Last reply 7/9/2013 - 2:27pm
Replies by: LesleyKS, trippettl, Janner

Hello all.  I am a 34 year old female who has had, in less than year: Melanoma In Situ on left leg, pre-melanoma on back, several severe atypia and now a new one that I don't understand the pathology report for and would like anyone's help in understanding it.  My doctor wasn't really explaining it to me and I am wondering if that is because it is inconclusive?  This pathology is for the initial shave biopsy, I have already gone back and they did a punch biopsy on the site to remove more tissue.  I am still waiting for the pathology report for the second removal.  Here is the report:

"Submitted is a single cell slide of  shave biopsy material that shows a compound melanocytic proliferation composed of epithelioid cells within the epidermis primarily seen in confluent single cells along the lower epidermis and with rare cells in the spinous layer.  The dermal component consists of nested epithelioid cells as well.  The proliferation is transected at the base.

Diagnosis: Skin, right posterior neck, compound melanocytic proliferation with epithelioid cell features, extending to the tissue margins.

COMMENT: The differential diagnosis includes a compound nevus with spitzoid features versus an atypical spitzoid tumor.  The lateral and deep tissue margins are involved and therefore because circumscription is not seen, re-excision with appropriate margins to ensure complete removal is recommended"

I had never heard of Spitz or spitzoid before and my doctor didn't explain it to me.  Google search are unhelpful and at times frightening so I would greatly appreciate any explanation any of you can provide.  Also, does anyone recommend sending the slides to someone else to get a better, more clear, diagnosis?  Or should I wait for the second pathology report?

Thank you in advance for your support.

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NYKaren's picture
Replies 13
Last reply 6/26/2013 - 11:33am

Yesterday I met Dr. Anna Pavlick. Wow. What a lovely, smart powerhouse of a woman. If all goes well, I should start the Merck phase 2 PD1 trial at NYU. Dr. Wolchok sent me to her when Merck abruptly closed remaining seats of the phase 1 trial @ Sloan. Dr. P feels that the brand new tumor in my ear should show up as measurable disease on the MRI I will be having on 6/25, the end of the 28-day wash-out period from Zel. There are a few more mets that should show up as well. I wished for 1 to be large enough, now I've got a whole harvest going here, of course making me worry even more... What if I get the chemo arm, what if the PD1 doesn't work, blah blah. You get the picture. But we both agreed that I'll still have the 2 new GSK drugs & hopefully still Zel in my back pocket.
I think that's about it for now, I'll keep you posted.

Don't Stop Believing

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jcmp's picture
Replies 1
Last reply 11/12/2013 - 9:10am
Replies by: Golda_

Hi Tim,

Do you know whether those who are BRAF 600E positive and have had Zelboraf in the past are eligible for the GSK BRAF and/or MEK inhibitor?  I read the GSK press release which states that the BRAF inhibitor (Tafinlar) is not indicated for use for those who have BRAF-wildtype melanoma.  For the MEK inhibitor (Mekinist), it says the same thing and also that it is "not indicated for the treatment of patients who have received a prior BRAF therapy."   If that's the case, it seems that everyone who has had Zelboraf cannot have the MEK inhibitor.

Could you please clarify this issue? 

Thanks so much.


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Shelby - MRF's picture
Replies 7
Last reply 6/13/2013 - 10:46pm

The Melanoma Research Foundation is working hard to make our website an even better experience – where the community of people with melanoma, survivors, researchers and caregivers can find and share valuable information and support, as well as find out about opportunities to get involved.

We value your opinion, and invite you to take a moment to complete a brief survey on how you think about and search for essential information on our site. The survey will take no more than 10-15 minutes, and is followed by a few very important exit questions. Here’s the link:

Thank you for participating, and be sure to share the link with friends – the more input we get, the better your experience with the MRF website will become!

Because we are hoping to get a new website up and running as soon as possible, we’re asking respondents to complete the survey by Thursday, June 13.


The MRF team

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