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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presleerae's picture
Replies 11
Last reply 8/7/2013 - 1:33am

HI everyone.  I am new to this site and don't know if I'm in the right place.  My husband has just been diagnosed with a malignant melanoma.  I have the pathology report and would like to share it with you all to see if anyone can help me understand it better.  Is this where I post the details of the report?  I feel ignorant about it and I'm really scared and am having alot of anxiety problems because of it.  He is the love of my life and I will stand by him all the way.  Just needing answers. 

We go to a dermatologist on August 15 and to an oncologist on August 19.  


Please let me know where to post this report.  Thank you so much in advance, and I apologize if I'm in the wrong place.


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I have come to realize my only post on here was about my mothers death. Knowing she was an avid writer on this board, I now hope to continue this tradition.  After my mom passed, I was astonised by how much support I recieved on here. Now, after nearly two years, I'm breaking the silence and vow to be supportive as my mother was when she was on here. 

As far as melanoma awareness goes, I have spoken to the Delaware house of represenatives about melanoma, I am working with Delaware health and social services to push more awareness in my state, and I did my senior research project on melanoma, which I am happy to say i got a 100% on. I will continue my research in college and my advocacy as well. I am studying biology for pre-medicine, maybe not oncology per say, but I would like to save lives. 

I will be attending Eastern University in St. Davids Pennsylvania, where I am a member of the leadsership fellows program, a scholarship through the school. I hope to use my leadership platform to start a skin cancer group or something of the sort around my sophomore year. 


My prayers go out to all the patients, family members, and anyone else affected by this disease. I know prayers kept my mother alive better than any medicine could, and it can work for you too.

If anyone would like to email me regarding awareness, grieving, coping, or any research, you can contact me at as I regularly check this email. 


Blessings to all and stay strong, 

Lilith Elmore

Freshman at Eastern University, Biology major

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

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MaryMary73's picture
Replies 3
Last reply 8/6/2013 - 9:45am
Replies by: JerryfromFauq, khen, KatyWI

I began fertility treatments in January 2010. The procedure is invitro fertilization. So after undergoing the standard hormone treatments, 22 eggs matured. Almost unheard of and so much so that I had ovarian hyperstimulation. Very painful. Out of the 22 eggs, 13 were successfully fertilized and became embryos. I had my first 3 embryos transferred in May 2010 but none took. I had the next 3 transferred in August 2010 which resulted in an heterotopic pregnancy of 1 embryo (emergency surgery to remove burst fallopian tube) and a miscarriage of the other 2. My husband and I decided to wait a bit...emotionally, I was a wreck and I was physically tired.

Melanoma rears its ugly head in November 2010. While sitting at home depressed about my crappy luck during the whole month of November, I happened to Google "fertility treatments and melanoma". It seems that research has been done that may link the two. I bring this up with my fertility doctor and he tells me that he has never heard of fertility treatments causing melanoma but he does confirm that the hormones given to stimulate the ovaries are extremely powerful. Hmmmmm.

I have 7 embryos left. I am 37 years old. Stuck between wanting a child but not wanting to risk a melanoma recurrence.

Can pregnancy raise the risk of a melanoma recurrence? Does anyone know?

The only real wisdom is knowing you know nothing -Socrates

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I'm me, not a statistic. Praying to not be one for years yet.

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NYKaren's picture
Replies 12
Last reply 8/6/2013 - 5:55am

I saw Dr. Wolchuk today, and he said that nothing lit up on the PET scan.  So we looked at the report, and things are looking  better.

To the naked eye, I feel that it looks like it's at least 50% gone, and he agrees.  He already emailed Dr. Sznol (at Yale/New Haven) recommending more IL-2, and Dr. S. is in complete agreement!  Hurray!!!  I honestly cannot believe it.  So now I'm waiting to hear from Yale about timing.

To be completely honest, this will wreak havock with my job,and I MUST keep reminding myself that MY HEALTH COMES FIRST, AND IT'S BETTER TO BE HEALTHY AND JOBLESS THAN DYING WITH A JOB!  I'm the sole bread-winner (my husband has liver disease) so it is somewhat scary, but as I type this, I know that I'd better follow the very same advice I give others.  Run, don't walk, to a treatment that's already making me better.  

So, Charlie, don't kick my ass, I'm just bein' honest here!  

I believe strongly that the IL-2 activated the Aldera, and that combo accounts for the dramatic response on my face.  Dr. Wolchuk and Dr. Halpern (dermatologist  @ Sloan) seem to agree.  I really like those two a lot, both as doctors and as people.

Here's hoping for more good news around here.


Don't Stop Believing

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They normally rrefused IL-2 to people with brain metastes.

July 31, 2013 — In a retrospective study, Saint Louis University researchers have found that patients with melanoma brain metastases can be treated with large doses of interleukin-2 (HD IL-2), a therapy that triggers the body's own immune system to destroy the cancer cells.

I'm me, not a statistic. Praying to not be one for years yet.

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94z28joe's picture
Replies 3
Last reply 8/5/2013 - 6:40pm
Replies by: aldakota22, 94z28joe, POW

went to the doctor to follow up after surgery to remove local reoccurance and was told I'm off the ippi vs interferon trial. I thought I would be able to stay on but, was told it wasnt working so I am being taken off the trial. :( They have me scheduled for scans on thursday to see where we go from here.

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Connie's picture
Replies 5
Last reply 8/5/2013 - 8:28am

If anyone out there has any information or been thru treatment for radiation burn and an open wound in a melanoma site, I would appreciate any help you could offer.  My Mom had a very large tumor removed in June in her inguinal canal which was a melanoma, probably metastasis from her big toe which was amputated 5 years ago. The surgical site healed very well. She has two other deeper tumors in her pelvis, that they have left alone as they said her quality of life would be affected. She chose not to do chemotherapy as she is 82 and did not want to feel sick with what time she had.  About 4 weeks after her surgery, a lump reappeared in the area of the tumor that had been removed. Since her lymph glands were involved in the surgery, the surgeon did not want to drain that area as he felt she could end up with a permanent drainage. Her oncologist offered radiation as a way to get microscopic cells left behind in the surgical site and "slow things down". Her organs have been clear.  She had 4 weeks of 5000  ???Grays a day. By week 3 she was badly burned ( raw area on inside of left thigh around 5 to 6 inches long by almost 2 inches wide) and the lump was still there.  Prior to radiation I read the radiologist report which said the lump was fat. They continued treatment until completion. She was told she could end up with a bad sunburn. She ended up with her skin turning black.  She had her do rinses 3 times a day to the site and apply a burn cream.  Early this week she got feverish and yesterday ended up in the hospital. Yesterday where the lump was, (and is?), opened up and a bunch of ( my sister said) blood and pus came pouring out.  She lives in Montana and I live in Washington and I have called my sisters as I feel she needs some Doctors who know about wound care.  The site is being packed and she is on IV antibiotic..  Does anyone know about hyperbaric medicine and wound healing?   Has anyone had a similar experience and has gotten good treatment?  Her skin that was healing from the burns has also been impacted by the infection and/or fluid accumulatiion.  Do you know of ointments or dressings that you have used to keep one area dry and healing while another area close by, is draining and packed? Has anyone had lymphedema cause a similar wound and if so how did they treat your wound? I will be going home soon and any help on what to ask and what to do would be greatly appreciated.



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Kate M's picture
Replies 6
Last reply 8/5/2013 - 5:47am
Replies by: GAngel, awillett1991, Kate M

Ok my mom started zel early July 4 tabs 2 times a day and get a grade 4 itchy rash off until July 21 restarted 3 tabs 2 times a day after 5 days she has been taken off due to breathing difficulties and flu like symptoms until August 8 then she will try 2 tabs 2 a day. Not sure what is next if she can't do zel. I asked about switching her to dabrafenib and they are checking to see if it is available in our area and if her insurance co is willing to pay.
We had to go to a private organization for help with the copay for the zel .does anyone have any information on the cost of dabrafenib.or any idea what our next step should be.
We don't have a melanoma specialist close enough to see and she is unwilling to travel. But thankfully her oncologist is good and willing to check out everything I ask about.
Thank you all so much we would have not made it this far without all of you.


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katd's picture
Replies 1
Last reply 8/5/2013 - 1:11am
Replies by: JenniferKincaid

Any one out there using interferon alpha treatment. Dr are telling me I cannot have another Pet/Ct Scan until I have gone thorugh the treatment (which I have 9 1/2 months left) and then wait 1 month.


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bikerwifee's picture
Replies 6
Last reply 8/4/2013 - 11:27pm
Replies by: gabsound, Swanee, aldakota22, Anonymous, awillett1991, POW

I think of yall all the timr and check on you each day. Many prayers and much love go out to each of you.

Im looking for information on gabsound. Has anyone heard from here.

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HopefulOne's picture
Replies 5
Last reply 8/4/2013 - 10:02pm

Just wondering if anybody has seen any research on how ipilimumab affects tattoos. My husband has pretty many tattoos all over his body and last night (at almost three weeks past his first infusion) the outline and shading of one on his leg became raised, approximately a 10-inch by 5-inch area was completely affected. This tattoo is 14 years old. No other tattoos on his body were affected. Yet. And after putting hydrocortisone cream on it it seemed to settle down. It was the weirdest thing ... It was a 3D image.

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Lori Stoen's picture
Replies 7
Last reply 8/4/2013 - 9:43pm
Replies by: Lori Stoen, ecc26, Gene_S

Wondering if anyone is in the trial GM-CSF / Yervoy ?? My dad was givin this as an option or to use the regulated dose of Yervoy... Wondering how the side effects are... Or  just anyone with the Yervoy side effects would be helpful.. We are so undecided ... Dad feels good now and is active doing many things at the age of 80 and he does not want to give in..... And I am in total agreeance with him. I just dont want to see him sick and I dont know if that triple the dose of the trial would be to much... Any suggestions from ppl that have been on either ?

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ecc26's picture
Replies 7
Last reply 8/4/2013 - 11:35am

Hello Everyone!

There has been a fair number of posts/discussions lately by those of us who have or are caring for someone in stage IV with brain mets. Often the posts and discussion have been centered around being denied access to clinical trials and having to undergo some sort of brain radiation in combination wth Ipi and concerns about the efficacy of WBR and Ipi's lag time before showing any effect. I've been following many of these posts and replied to several myself as I found myself with 7+ brain mets in June and denied access to PD-1 trials. Due to the number of brain mets I ended up going with WBR starting concurrently with Ipi and my doctor decided to add on self injections of GM-CSF for 14 days after each dose of Ipi. 

I recieved my 3rd dose of Ipi one week ago, and had my one month post radiation MRI this week and just got home from the results appointment. I wanted to share the good news and possibly give some hope to the others out there that are dealing with the worry that comes along with stage IV with brain mets. They were expecting my one month follow up scan to be more or less the same as my pre-radiation scan, with reduction in tumors hoped for for the 3 month follow up MRI. Today I got an early gift: There are no longer any areas of concern on my meninges and of the 7 visible masses that were there before on only 4 are still visible and those are so faint/subtle they may just represent scar tissue. It's a much better result than anyone was hoping for for this scan and I'm on cloud 9!

So hang in there everyone! There is always hope and good things do happen!


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Jims wife's picture
Replies 2
Last reply 8/3/2013 - 9:33pm
Replies by: NYKaren

My husband had his second treatment on Wednesday.  He is stage 4 (into lungs).  On the way home from Boston, his system let loose and he could noy control the diahrea.  They had him take prednisone and return to the hospital for a few hours.  He has had one or two incidents since but nothing like that commute home and the following hours.  Has anyone experienced this reaction?  I see people mentioning rashes.  This was very frustrating and upsetting for him.

Any thoughts?

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