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 6
Last reply 5/19/2015 - 8:48am
Replies by: Anonymous, ncdaniel, Thandster

I was diagnosed with stage 2 March 2015. 

I had a breslow depth of 2.9, clarks level IV, and a mitoitc index of 12. I don't know if anything else is important from the path reports.

My treatment was a sentinal node biopsy, followed by a wide local excison. (University of Michigan Cancer Center.)

The two nodes removed came back negative and my margins are clear.

My surgon says that is all I need for treatment. 

I am asking for comments or insight if this is ok or should I pursure other treament or scans.

Feeling relieved but also still a bit unsettled.





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I have some questions about basic properties of cancer/melanoma that I can't find the answer to.

How is advanced melanoma sub-staged? I understand that the sub-stages are M1a (skin and lymph node metastases), M1b (lung) and M1c (any other organs, including liver and lung). But what about metastases in the bowels? Is that M1c? Does it make a difference for the prognosis if the tumors are in the liver or in the brain?

Why is the tumor burden important? What happens to the body if you have a high tumor burden? I have seen the word cachexia, but how ill do you have to be before that occurs?

Thank you!

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Anonymous's picture
Replies 3
Last reply 5/18/2015 - 6:54pm
Replies by: Ed Williams, Bubbles, Anonymous

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Bubbles's picture
Replies 1
Last reply 5/17/2015 - 8:55am
Replies by: JoshF

This is not something I am pushing at all, but did come across the info and thought it might be worth investigating in patients who have already had several therapies and are still seeking an effective treatment.  I am not sure if patients who have been treated with anti-PD1 will be accepted, though patients are required to have had treatment with IL2, ipi, vemurafenib (if BRAF+) OR dacarbazine.'s the links to the article, info, and my write up (as best as I can tell, anyway!!!):

Wishing you all my best.  Celeste

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Anonymous's picture
Replies 4
Last reply 5/16/2015 - 2:18pm

My wife of 25 years recently passed away from melanoma.  She went to her family doctor with a large new thick black lesion on her face.  He sent her to an Ear Nose and Throat (ENT) doctor to have it removed.  We waited for 3 months to get in to this appointment.  He removed it and 2 weeks later told us it was melanoma.  It took another month to get in to an oncologist. The oncologist referred us to another ENT who did a radical lymphectomy (positive for 13 lymph nodes).  At this point it was 6 months from the time she called for an appoinment from her family doctor until the day of surgery.  They waited two months to heal from surgery and decided to do 30 treatments of radiation, which made her so sick and lost almost 40lbs unable to eat due to mouth sores).  They started a Gtube to do feedings.  Now 10months from her initial appointment they decide to start one dose of dacarbazine then Vervoy x 3 doses.  Asked several times for a brain MRI but told they wouldn't do it if there were no symptoms.  She told them several times of numbness and tingling in her hands and I told the doctor that her personality was changing.  She died 2 weeks after the third Vervoy dose from a bleeding brain turmor-9 months from the time of diagnosis.  My question-we went to a melanoma specialist, why did they wait 6 months before they started systemic therapy on a metastatic melanoma?  Why did they do radiation first? I truly believe that there must have been a better way to manage her treatment.  In the effort of improving care for future people living with melanoma what could have been done different (aside from having a family doctor that made her wait for 3 months for a biopsy for something that clearly appeared like melanoma)?  Thanks everyone for your help.  It has been a fast and difficult ride.

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mike_nj's picture
Replies 5
Last reply 5/15/2015 - 10:56pm
Replies by: Janner, mike_nj, Anonymous, Debbieamccoy

Hi Janner


This is MIke from NJ.   Whn the chat was active, we used to both participate regularly.


I skipped my scan this year as being 3B out 10 years but plan on getting one in a few months or so.


Reson for post is that my sister Patty had a recent shave biopsy of a mole on her shoulder and it came back as mm  IN SITU

I had questions of the effect of the shave on the true assessment and I was wondering if my sister could call you to get your perspective.  She has an appointment tomorrow with a surgeon.


My email is if you can send me your contact info.




Mike Kelly

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eturner82's picture
Replies 8
Last reply 5/15/2015 - 10:42pm
Replies by: _Paul_, RJoeyB, Wheels1994

Hi guys,

I always like to have a plan B for my husband here is a run down on my husband and the treatments he had had.

May 2007- stage 1 mole on right shoulder removed

Feb. 2, 2013- Yearly derm appt. dr feels enlarged node in right arm pit

Feb. 18, 2013- Meet with Mel specialist UVA- ATTEMPTS biopsy of node but only pulls fatty cells and spindle cells- Orders MRI AND CT

Feb. 23, 2013- MRI of brain clear- CT showed "snowstorm" small areas on right lung

March- Rt. Lung has biopsy- NEG (no cancer ) biopsy

April 2013- 6cm lump removed from right armpit and is POSITIVE for mel

May 2013- All nodes removed from right arm- NED

July 2013- Radiation to right armpit

Sept 2013- CT of chest ( was going to do a vaccine trial at UVA)- CT showed he was not NED and had bone met to lower spine

Nov 2013- IL2 - after 2 rounds scans show growth- Bone Mets

Feb 2014- starts Braf combo drugs- responded until July 2014- Bone mets

Sept 2014- starts IPI and receives all four doses ( scans show progression) Bone Mets( spine, hips, ribs and skull) Bone mets are to numerous to count and both Lungs have multiple mets.

2015- STARTS PD1

Which now brings use to May 2015- First set of PD1 scans showed 1 new tumor in lung and new adrenal gland- continued on with PD1 (giving plenty of time for PD1 to work) scan coming in one week- He has had a rib break in this time and pain in his spine which has lead to a X-RAY that showed a T-5 spinal tumor and radiation was given to the area- last week arm pain lead to large arm tumor being found and rod being placed in arm today.

Needless to say I am very nervous about next Mondays scans and wondering if anyone has any suggestions on our next step if PD1 is not our magic bullet.... Would he be someone who could even have TILS?


thank you 



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Hi all, been a little while. My daughter had a metastitised tumor in liver that started at 14 cm then after embolisation and yervoy, it is now gone from 10.2 to 9.4. All other organs still clear. They now want to start her on Keytruda to try to shrink it to an operable size. Anybody that can give me advice of side effects and progress? Doc said should be less side effects than Yervoy. She will need 4 to 6 rounds. 

praying for resection this year! 


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Lisa13's picture
Replies 7
Last reply 5/14/2015 - 6:15pm

Yesterday I received my pathology report from the surgery I had a month ago.  I have a nodular melanoma 22MM deep, ulcerated with 1 lymph node out of 19 positive for melanoma. That being said, I'm relieved that only 1 lymph node was involved, but now, I'm VERY concerned with how deep it is.  My mitotic value is surprisingly low (1) which is rare for a deep tumour.  I'm also currently NED as per PET scan results.

Anyway, is there anyone out there whose had a deep tumour or nodular melanoma with similar characteristics?  Everything I read about this melanoma is BAD and I know the prognosis is BAD, so I'm really hoping there is someone out there who has beaten the statistics.   I'm also wondering if it's do deep, does it even matter how many lymph nodes are involved. 

I'm now deciding between Interferon or hoping this Ipilumumab gets approved so I can get get myself over to the U.S. for treatment.  Any advice, any help?  I've got a 16 month old daughter, so my goal is to keep this away for as long as possible.

P.S  I must thank my dermatologist who LAST September told me it was a sebaceous cyst!




Many impossible things have been accomplished for those who refuse to quit

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Anonymous's picture
Replies 3
Last reply 5/14/2015 - 6:00pm

Dear all

I need a comment from You

Brief story:

In the last year (February 2014), my wife had a mole removed from her back (near spatula). Mole was removed for aesthetic reasons because it do not expanded, do not itched, there was no redness, etc. Unfortunately, the mole was burned by laser (stupidity does not hurt). After the scab fell off it turned out that the mole started to grow again. For this reason, we went to a surgeon to remove what has grown. It turned out that it was a melanoma (Clark III, Breslow 0.6 mm), but we do not really know what were the characteristics of the primary tumor. In the next stage wife had biopsy of sentinel lymph nodes. The result was positive. Metastasis to the two sentinel nodes as single cells and cell clusters on a length of 2 mm. The result was a complete lymphadenectomy (September 2014). Analysis showed that the remaining nodes were clean. We were offered participation in clinical trials. To this end, they sent lymph nodes and a mole from her back to indicate the BRAF status. In the case of a mole they failed to determine the BRAF status as ,, Quantity not Sufficient to test'' what I understand. However, in the case of nodes result was as follows:

BRAF status - No tumor Indicated
BRAF comment - Result of no tumor confirmed by 2 Pathologists.

In February wife had a CT scan and everything is in order.
Do you think such a result should prompt us to re-execute the histological examination of sentinel lymph nodes? We not yet talked with our doctor about this.



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barrykatz's picture
Replies 14
Last reply 5/14/2015 - 1:25pm

My father has had his first cylcle of Yervoy. the only side effect so far is very bad itching. to the point where they rash is starting to bleed because of the scratching. Our Dr. said we are not allowed to use any cream on the skin whatsoever. We are only allowed to use Benadryl or Claritin,


This really does not make any sense to me. Has anybody used any cream to combat the itchy side effects ipilimumab / yervoy. Please let me know. I really would like to be able to help him with this ASAP. Thanks

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Anonymous's picture
Replies 1
Last reply 5/14/2015 - 1:01pm
Replies by: Janner

Is hair growth a sign of a healthy mole or at least one where cancerous cells have not yet invaded deeply thus killing the ability for the hair to grow?  I've read differing things online and thought I'd ask the experts!

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kpcollins31's picture
Replies 20
Last reply 5/13/2015 - 5:50pm

I am 37, the father of three young boys, and the sole provider for my family. I was just diagnosed with melanoma on Friday (2/18/2011) and am wading through all this new information. It is intimidating and frightening. I had a growth on my forarm... was large and unsightly but the doctor was not concerned. Initial diagnosis was keratoacanthoma. Now I get this report on a malignant melanoma... Breslow thickness >8mm, Clark level V, ulceration present, mitotic rate of 7. All Greek until I start doing some reading. Now I am almost wishing I had not read anything. Still a little shocked and scared. I am scheduled for a sentinal lymph node biopsy in a week on my birthday of all days. Hoping for the best present ever which would be a negative result.

Happy to have found this forum in my reading. Wish me luck.


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Anonymous's picture
Replies 7
Last reply 5/13/2015 - 5:24pm
Replies by: Anonymous, Patina, Bubbles, Mat, Julie in SoCal

Do any studies allow patients w brain mets?  Does yervoy alone ever work on them or do they need to be radiated or gamma knife?

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Anonymous's picture
Replies 4
Last reply 5/13/2015 - 2:03pm
Replies by: Raoulduke212, Janner, Anonymous

I had a odd looking mole biopsied.  I only spoke to the nurse, but she told me the pathology came back as "Severely Atypical Lentiginous Junctional Melanocytic Proliferation."  She says it's not cancer but when I google this term, I get nothing but melanoma articles.  Can someone explain this to me?

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