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: Marianne quinn, Squash, Anonymous

Hi I was diagnosed in 2013 with stage 3b melanoma that started in my forearm and then blossomed into a 3.3 cm tumor in right armpit.  Mitotic rate was 4. I was whacked and hacked by dr Jacobs at mayo in Rochester mn. I turned down interferon and radiation and just did the surgery.  All the pets have shown a 2cm spot on liver with abnormal uptake and a small spot on my thyroid with abnormal uptake.  Dr McWilliams said not to worry and just to watch it.  They just did another pet and he ordered a fine needle biopsy of my thyroid and it was positive for papillary thyroid cancer.  Sounds like no biggie so I'm going to have alcohol ablation and hopefully that will kill the ptc so I can keep my thyroid.  My question is:  should I request a fine needle biopsy of my liver?  Also would you have them hack  out your thyroid or just alcohol injections.  Kind of makes me nervous about the liver since we waited on the thyroid and only after a fnb do we find out its cancer.  What do you think?

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flaglerjoe's picture
Replies 6
Last reply 4/13/2015 - 4:38pm

After a trip to see a new dermatologist after having a bad experience with another, I was diagnosed with stage 1b melanoma. Today I found out that the tumor removed during the WLE was actually 1.96mm rather than the 0.55 indicated by the punch biopsy. The initial shave biopsy indicated an atypical mole and the punch biopsy showed melanoma 0.55 mm, probably nodular with a mitotic rate of 2. The surgeon did not feel the SLN biopsy was warranted as it was thought to be smaller than 0.75 mm. Hidsight is definitely 20/20 on this one.

Now, I am headed back for a SLN biopsy ASAP. If something is found, I would like to look for an actual melanoma specialist. Does anyone have any recommendations for someone living in Florida? I am young and have two young kids so I want to make sure I get the best possible care if anything further is needed. Other good places to read and learn?



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Joe.Pro's picture
Replies 15
Last reply 4/16/2015 - 9:48pm

Diagnosed last week with Melanoma on the bottom of my foot after my podiatrist did a punch biopsy on a lesion I've had for approx 18 months.  It was pretty nodular and had started to grow in the last couple of months especially.  

Brain MRI was clear

PET scan showed a lymph node in my groin (which I can feel) as suspicious of cancer.  

Surgery next week to remove the lesion on my foot (along with several toes) and all of the lymph nodes in my groin/pelvis on the affected side of my body.

Here is my question...

i am being treated at Dana Farber in Boston and my onc asked me if I'd like to be in a trial for a specialized vaccine that is made from my specific tumor.  Apparently they take the tissue from the tumor and create this vaccine with the hopes of preventing recurrence. Sounds interesting but since this is a new trial (only 5 or so people so far) the data is very limited (however she did say that mel hasn't returned in any of the enrollee' so far although I didn't ask about time frame) or....


Seems like a tough decision, was hoping maybe you guys could help me make it easier?

Thanks so much for your feedback and God Bless each and everyone of you!


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Kopetz's picture
Replies 4
Last reply 4/16/2015 - 12:38pm


My dad has Malignant Melanoma for the past 7 month. He had a tumor removed from his head, radiation to the area, prescribed Tafinlar for 3.5 month but was taking off due to hard side effects, and now he started using Zelboraf. I am looking for someone who has been using this medication for a long time (maybe years) who can shed some light on his day to day life with this drug. How bad are the side effects.

Thank you and be well,



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Replies by: Jubes, Ed Williams

My Mom had MRI scans of her brain taken last week and the results were great. Nothing new to report and while they are watching 2 with edema it all still looks great.  She has been driving since January, take a vacation for her 79th birthday to the Bahamas' and is looking forward to visiting my Nephew in Sweeten this summer.  So, all is great on her end thanks to the doctors at USC. 

-- 1 week shy of the 1 year anniversary of her last gamma knife treatment for 17 new brain mets. - 8 treated in Dec of 2013.

-- The tumors in her trunk (originally 6) have done nothing but shrink or disappear. So, we are keeping our fingers crossed that the next appointment in May to her oncologist will show the same.   

I wish everyone had these results today, but they will one day. 

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arthur's picture
Replies 10
Last reply 4/13/2015 - 7:45pm

I posted here about a year and a half ago debating whether or not to take Interferon-Alfa or ipilimumab as an adjuvant therapy and ended up taking Interferon although not necessarily by choice as there were issues with the insurance and Interferon presented itself as the more financially viable option. 

I completed the yearlong regiment of Interferon in September and unfortunately a few weeks ago had a recurrence; one tumor in my lower back, one in my shoulder and three on my brain. My initial diagnosis was Stage 3B Nodular Melanoma so we knew recurrence was a strong possibility although this was much more extreme than I had been anticipating. I've underwent radiation of the brain, back and right shoulder, 10 treatments for each area and my oncologist(s) seem (somewhat) optimistic as they've indicated the tumors are (relatively) small. I can't help but think though that the metastasis is very bad for my long-term prognosis however, but I remain pretty positive. For the record, the initial melanoma was in my right shoulder, 6.5 mm thick, ulcerated and had micro metastasis in 1 of 19 lymph nodes removed from surgery.

Anyways I'm currently seeking several opinions from my oncologist and melanoma experts from UW-Madison and the University of Chicago on what my next treatment plan and ipilimumab once again has come up as what my next likely course of treatment will be now that radiation is complete.

My question is for those of you that have taken it how did you handle it? I know everyone responds differently I'm just looking for personal experiences.

I'm 24 and in good shape and health (except for the cancer of course) and plan on graduating university in December. I mention this because the first month of Interferon was absolutely debilitating and forced me to miss one semester already and obviously would like to avoid that happening again (luckily summer is around the corner).

Any experiences you have like how you felt, side effects, how long you were on it, etc. would be greatly appreciated. I've read nearly every article/fact sheet I can about ipilimumab, but I find hearing personal experiences from people on it to be more beneficial than a cookie-cutter list of side-effects you see online.



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ashlee12's picture
Replies 8
Last reply 4/14/2015 - 6:49pm

I have a mole that I have had all my life... Well every since I can remember .. It's a medium brown and it's defiantly smaller then a pencil eraser.. Well I noticed sometimes when I itch my arm after I itch it it turns into a bump... Obviously I'm freaking out ... The bump then goes away after some time




im terrified its bad .... And I don't wanna Google.... Any thoughts

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Jubes's picture
Replies 10
Last reply 4/13/2015 - 4:48pm

Does anybody else on keytruda have terrible mech back and shoulder muscle pain? Thanks


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410451's picture
Replies 12
Last reply 4/19/2015 - 11:20pm

My dad was diagnosed with melanoma last summer (originally diagnosed as Stage 2b but Breslow scale 5).  His primary tumor on his trunk was removed in May.  In October it was discovered it had spread to nearby lymph nodes and a baseball sized lymph node full of cancer was removed.  The radiation oncologist strongly encouraged radiation (which I tried to discourage my dad from taking).  In December he started 30 sessions of radiation.  CT scans after radiation showed the cancer had spread to both lungs (at least 10 spots).

Dad is 73 and has less than a healthy heart and lungs before the cancer had metastasized to his lungs and several other issues common with aging.  Because of the side effects of treatment and the low success rate, he has opted not to take treatments.  He could change his mind but  would have to before the cancer burden was too high on his body. 

Recently he has feeling good and had returned to normal activities. He's still pretty active and enjoys outdoor activities, wood working, etc.  But, most of this week he has felt nauseous and has slept a lot during the day.  This is very unusual for him.  So, at this point, I would like to think it's just some bug he's picked up but can't help but wonder if it's the cancer making him sick.  I will call the nurse on Monday to get her input but I also would appreciate if others would share their knowledge.  I live a few hours away from my dad so I know a time will come when I will have to spend a lot more time taking care of him but with a full time job, my own family, the unknown is tough.  So, if anyone has a family member that has gone through something similar as my dad, I would appreciate the candid feedback.

Thank you.


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Anonymous's picture
Replies 1
Last reply 4/11/2015 - 9:40pm
Replies by: Squash
The Truth About Cancer - 48-Hour Replay Marathon is Happening NOW!
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Replies 5
Last reply 4/11/2015 - 9:52pm
Replies by: Anonymous, dvd, Ajricc00, Jubes, sweetaugust

Hi, I just returned from my dermatologist's office where i had a growth on my upper thigh biopsied.


The background:  a few months ago I noticed a painless little bump that kind of looked like an ingrown hair or something on my upper thigh--but I tried popping, and nothing came out. In any case, I wasn't worried about melanoma bc I knew the ABCD's and it didn't follow that pattern. But this past week I noticed it was increasing in size quickly--so I did another google sweep and stumbled across nodular melanoma and--terrifyingly--my bump had these characteristics. I saw my dermatologist today hoping he would look and say "NBD"--but he was decidedly cautious in the way he spoke about it to me.

In a nutshell, he said it was either a hemangioma, or a type of melanoma that I cannot for the life of me remember what he called...something with an "a"--referring to the fact that it didn't have the melanin that makes things brown? Does anyone know?

He said it looked purple, which was promising--as most are brown or black--though that conflicts with what I've read about nodular melanoma.  He also said that he was happy that it bled when he biopsied it--but I have no idea how indicative that is.

That was most of the substance--the rest of the convo was him trying to walk a really fine line between comforting me and preparing me for a negative diagnosis.

Now I have one week of waiting...and I just wish I could find some positive stories about this rare type of melanoma...but I'm coming up short. Most just talk about how aggressive and deadly it is. Or find at least one bit of info about a hemangioma that looked like what i have--but nothing there either.

I have an 8 month old and I can't stop thinking about him growing up without a mother, and not getting to see him grow up. 

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The treatment developed by Carl June that is mentioned in the article (and was featured in the last hour of the PBS special) will be tested in melanoma in the near future.

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rmclean306's picture
Replies 3
Last reply 4/13/2015 - 7:49am
Replies by: Marianne quinn, casagrayson, Anonymous

My doctor just told me that he suspects subungual melanoma on my left thumb. I go to a dermatologist next week. It's scary to think about. How do you post a picture for others to see?



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JoshF's picture
Replies 19
Last reply 4/16/2015 - 5:05pm

Ive got CT chest/neck today. Not feeling as confident about scans in past after 3rd surgery due to recurrence in cheek after combo of ipi and il-2. Send good vibes...I've got a major case of scanxiety!!!


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

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