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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gaby's picture
Replies 2
Last reply 6/10/2014 - 8:42pm
Replies by: Anonymous, Thandster


My husband is stage IIIa from june 2012 At that time the oncologist gave him two optiones:  watch and wait  or pegylated interferon for 2 years. He did not felt comfortable with doing nothing, then try pegylated interferon wanted .


MY husband is with pegylated interferon since October 2012, he has a normal life , working full time. The  most annoying symptom is fatigue. My husband is now 40 years old, he  has its scan every 6 months and blood checks , and these last two months  he did 2 PET, thank god he's fine for now.

We are trying to have a child 3 years ago, I even did two IVF ICSI treatments but not get pregnant. According to the doctor I'm fertile, the problem is in my husband's sperm.

The oncologist gave no evidence that the interferon produced or no produced infertility.

you know whether interferon produces or aggravates male infertility?


we are very sad and depressed by this situation.


Melanoma most infertility is destroying our lives.

thanks and regards


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NYKaren's picture
Replies 9
Last reply 6/16/2014 - 12:36pm
Replies by: NYKaren, kylez, ecc26, Bubbles

Hi, after just failing the BRAF combo drug, it will be onto PD1. (1 tumor on MRI was 11 found on gamma knife, some on already existing or new tumors). 

I know you have to be brain met free or stable for a certain amount of time; is it always 4 weeks as I've heard from NYU)?

anyone know about Sloan?

i'm finally getting what I've wished for, PD1, after failing all the standards (although the BRAF combo lasted me the longest --8 months--I'm terrified now. 

Anyone who's on PD1w/brain mets, PLEASE let me know how you're doing. 



Don't Stop Believing

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My past topic related to our need to transfer into one of the carriers that provide coverage through the Affordable Care Act. I lamented that our choices around Greenville SC are very limited and appear to exclude coverage for some of the drugs my wife is and will be taking in her battle with Melanoma. I am looking into some of the carriers in the Charlotte area, and it appears that we may have better options in that community.  I have no problem moving to the area if it means we can get her the care she needs.  The carriers listed, include Aetna, Cigna, Humana and Coventry One. I am only starting to research their coverages but at least Cigna has some Oncologists for us to work with.

1) Does anyone currently have coverage with any of these carriers - with the plans provided under the ACA?

2) Doe anyone have suggestions for doctors or clinics that they are using?

Thanks in advance for your help.


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ilikepralinen's picture
Replies 12
Last reply 6/11/2014 - 4:14pm

Hello Everyone,

I am bit confused now about this Disease.

Last weeks i got the results of couple of scans.

1.  MRI - Spinal : No Primary Tumor  detected.

2. PET - CT :No Primary Tumor  detected.

3. Blood : No signs of Metastatic Melanoma.

4. MRI - Head - Necrosis has began.


As of now, doctors unable to find  a Primary site.


Is the Initial Diagnosis wrong ?? (Metastatic Melanoma in Brain).

( My Original Post :


My Skin specialist feels that its only there in the brain. Skin specialist wants to wait and see the results of Brachytherapy (Radiation).  As there is lot of side effects with the medication, Skin Specialist wants to begin it only when it is required. (dabrafenib +  trametinib).


Has anyone more info on Primary Melanoma in Brain??

Can you detect  Melanoma in Blood?

Does having brown skin influence BRAF V600E test results?

Has anyone used the combination of the following Medicines? (dabrafenib +  trametinib)

Thanks a lot in Advance

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flvermonter's picture
Replies 2
Last reply 6/6/2014 - 3:50pm

Hello, I need to update the profile once i find it again, but would like some help in next direction.  My husband had BOTH lung cancer (right lung) and melanoma on the right side.  He had all the lymph nodes removed and was advised it had passed beyond; however, no other site found in May 2012.  His petscans were good through Jan 2014.  By the way had open heart surgery for aortic valve replacement Dec 2012.

He balance became quite off and worsened over time.  Petscan was good, MD checked and ok, ifnally went to a Nerology Dr who ordered and MRI this was end of March 2014.  3 metastic tumors showed on the brain.  This was followed by WBRT that completed 3 weeks ago.  His balance was somewhat better for awhile, but is slowly worsening.  Additionally, his righ hip or top of his right light has sharp pain when he stands.  He has also been on prednisone since 3/22/14 for the swelling on the brain.

He had a petscan last week, it showed no other tumors in his body, albeit, a suspicious spot on his top of right femur.  That is getting a catscan today.  The petscan showed the 3 tumors that the March 2014 showed.  The Radiation Onc said it may be just the swelling from the radiation and that may be unusual for radiation not to kill the turmors.  He added that melanoma is unpredicable.  So we are waiting to see if his balance improves and checking the leg. 


Here is the MRI info from 3/20/14:

asymmetric areas of vasogenic edema involving the right posterior parietal lobe and left frontal lobe as well as the cerebellum on the right side.  A discrete 18-mm mass in the right posterior parietal region and a larger 2-cm mass within the cerebellum on the right side.  A distinct lesion within the left frontal lobe is not appreciated; however, given the asymmetric white mater changes, it is highly suspected that a third lesion in this location is present.

Here is the PETscan from 5/30/14:

Hypermetabolic 29mm right cerebellar metastasis with SUV of 8.5.  There is circumjacent vasogenic edema with mass effect and effacemetn of djacent margin of fourth ventride.  No hydorcephalus.  A second 20 mm intensely hypermetablock metastasis with SUV of 11.2 in superior right parietal lobe involving precuneus.  Circumjacent basogenic edema with compression of overlying parietal cortical suici.


He has not seen a medical onc, only the radiation onc.   I think we need an MRI to compare apples to apples for sure, but can melanoma be treated with radiation and NOT be killed?

Hugs to all, patients and care givers.

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Gene_S's picture
Replies 3
Last reply 6/4/2014 - 11:44pm
Replies by: Gene_S

The web site is    You need to open a free receive emails



 Best wishes,


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 2
Last reply 6/5/2014 - 8:15am
Replies by: hbecker, G-Samsa
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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ckoch's picture
Replies 7
Last reply 6/9/2014 - 9:02pm

I finished my four treatments of Yervoy on April 24, 2014.  During the treatments I suffered from most of the common side affects, headaches, itching, tirednes all which resolved after treatment ended.  .   Around two weeks after completing the treatment I was hit with severe fatigue. I often times sleep up to15 hours perday, I have severe body weakness and aching.   It is so bad that i have had to go on disability because I am unable to work.  In 2010 I completed 1 Year Interferon and the symptoms I am having now are just like those I experienced while on Interferon.

Wondering if anyone has experienced, what I feel is a delayed response to Yervoy?  If so, how long did it last.  Would appreciate any input.

BTW 1st PET/CT showed tumors have shrunk to almost nothing.  Will re-scan in July.

Thank you,




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odonoghue80's picture
Replies 12
Last reply 6/6/2014 - 4:44pm

Hi there,

Has anybody have any surgeries while on Anti-PD1 clinical trials? I have been on Anti1-PD1 / Anti-KIR clinical trial for just over two months. I had a mixed response from my first scans. First of, I'm feeling much better which is great, and some of the tumors shrunk, or even resolved. So I'm happy about that, however, there were others that grew and some new tumors appeared. Now both me, and my oncologist are unsure what will happen in the short term. So I want to be ready to know what the next treatment option is.

Since I have numerous accessible tumors, I want to have a tumor or two, taken out at MD Anderson so they can try to grow the Tcells. If my TIL's grow, MD Anderson can froze those until I might need them, or if I'm qualified for the TIL therapy.

My concern now is that I don't want to just jump ship from my current Anti PD1 / Anti KIR trial. I definitely don't want to get kicked out of the trial by going to another center and having a surgery in the middle of a trial. Is there any way to find out if this is possible? Is there a way to call the pharmaceutical drug/trial directly and ask them?

My reason for removing the tumors and testing to see if MD Anderson can grow my TIL's is a type of insurance for myself. This way, if my current trial/drugs don't work, then I know ahead of time if the TIL therapy is a next option for me.

Any thoughts? Or help? If anybody else encountered similar problem?



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Anonymous's picture
Replies 0

Take that, cancer: Immune booster drug getting kudos

By Joseph Mayton, Tech Times | June 3, 4:19 PM


Cancer is about to get a new foe, and it's not that different from what we already have in our bodies. A new study announced at the American Society of Clinical Oncology meeting in Chicago says that the melanoma drug Yervoy reveals that it can improve treatment for those with advanced and earlier stages of the illness.

The drug aims to allow the immune system to rebound and attack, and has been shown to help in advanced stage 4 melanoma.

In what is being viewed as significant, the drug reportedly reduced the risk of melanoma recurrence by one-quarter. The median time until the diseased return after surgery to remove cancer tumors was around two years and two months, compared with less than a year and a half for those on a placebo.

This could be a major development in how cancers are fought, especially melanoma. And researchers believe they may have begun to unlock many clues to future cancer treatments.

Also at the conference, scientists have reported that the modification of white blood cells, or T-cells, can destroy and make cancer cells disappear. The study by scientists from the National Cancer Institute is a huge finding that could dramatically change how medical professionals battle cancer.

Despite the optimism around the findings, the genetically modified T-cells only make cancer cells disappear for a limited period before they return. The concept that many scientists had believed, that cells can work to help battle non-blood cancer and tumors, has been principally answered. Now, more testing and research is needed to continue the effort to find a way to kill and end cancer.

The study was conducted with women who had cervical cancer, which is caused by a virus, the human papilloma virus, or HPV, which a woman's body trains its white blood cells to recognize. The study tested whether those same trained blood cells, if genetically modified, could work against solid tumors found in cervical cancer.

In three of those women who were given treatment, their tumors shrank noticeably, while two other women saw that the cancer that had spread to other areas disappeared entirely, but scientists warned that it is too early to tell whether the women were cured.

If true, it could be a major coup for medicine, where cancer continues to be one of the leading causes of death across the planet.

"This proof-of-principal study shows that adoptive transfer of HPV-targeted T cells can cause complete remission of metastatic cervical cancer and that this remission can be long-lasting," said lead study author Christian Hinrichs in a prepared statement at the conference.

"One implication of the study is that cellular therapy might have application to a broader range of tumor types than previously recognized. This treatment is still considered experimental and is associated with significant side effects. We also need to explore why this therapy worked so well in certain women, and not in others."

Overall, the initial reaction to the study has doctors and researchers extremely excited, with many praising the efforts of the NCI in continuing to look at new methods and efforts to battle against cancer. While they are hopeful that the potential discovery of a "cure" of some kind is positive, they remain cautious before further testing and study can be done.

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jogo's picture
Replies 2
Last reply 6/8/2014 - 6:49pm
Replies by: jogo, Tina D

One year NED as of D-day (June 6th).  Ipilimumab (3 mg/kg body weight) was stopped after second infusion in clinical trial E1609 due to an irAE that was off the charts.  Inflammatory ulcerative colitis seems to have been taken care of thanks to 2 infusions of infleximab (Remicade).  Still careful about diet.  Still waiting for hair to grow back.  Now I'm told that while the MRI did not show hypophisitis, I do have AI, adrenal insufficiency.  My Medic Alert medallion now will have to be the size of a hub cap.  I have anaphylaxis to peanuts and all tree nuts and their oils.  I will have to add information about my adrenal insufficiency.  This is important in an ER situation. I obviously need information and instruction on how to deal with this new development.  Florinef, prednisone, and epi-pens, oh my!  One NED day at a time sounds good to me.smiley


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If anyone is in Indianapolis Indiana I will be walking at dusk to raise money for awareness and a cure..June 14 7 pm at Fort Harrison State Park

Remember what's important and make everyday count

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brittanyx's picture
Replies 6
Last reply 6/6/2014 - 7:55pm
Replies by: michaelinsocal, Ed Williams, Ginger8888, Becky, Anonymous

I'll be doing the interferon treatment for a year and was curious if anyone here has done it or doing it and how it was/is for them and the side effects?

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on June11. All due to literally "one" Mel cell in sentinel node biopsy. To say we have waffled back and worth on this is an under statement.

As her primary care giver, what should I be aware of and expect?


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