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.

Expand/ Collapse Topic
Replies By
View Topic
jenny22's picture
Replies 5
Last reply 11/3/2015 - 1:43pm

Hi All-

Just as I was approaching the ONE YEAR mark from my first recurrence....coming up around NOV. 15th.....On Saturday evening I felt a little "bump" just above, but right near the incision....It looked and felt completely  different from the first one, which was hard....this one was soft and "squishy", so I was hopeful it may have been something else.

First phone call  Monday morning was to my wonderful DOC, Anna Pavlick's office.....they said to come in  as soon as i could get soon as she felt it she said it could be 50/50 and sent me upstairs for an FNA, they had the results by the time i got back to her office and it was positive for Melanoma, so my hopes of it being nothing were now gone.....She simultaneously set up CT scans for Head, neck, chest, abdomen and pelvis that same afternoon.....I got home at around 7 pm, and at 8:45 Dr. Pavlick called to tell me they didn't  have the NECK report back yet, but all others were CLEAN....such incredible still waiting to hear  results from neck scan today.  SUCH  AN AMAZING DOCTOR AND PRACTICE,  unthinkable to have had all that done in one day, at a major NYC institution....I am now scheduled for tomorrow to see Dr. Coit and MSK who had done all my past surgeries...and hoping NECK scan wont show anything more than this new 5mm "bump"...

OK, so now on to my question...Dr. Pavlick thinks we should now do radiation this time, as this is 2nd recurrence in same place, first one was last year almost same  time (I'm starting to HATE NOV/DEC....)  Her WORDS; she wants to "sterilize that neck area"

I asked about doing IPI, especially now that its been approved in the adjuvant setting...she isnt in favor of that as thinks it still very small stuff, and toxity profile so high with IPI....also noting i did VACCINE trial at NYU this past spring, and had severe reaction at last treatment, and ended up with diahhrea and microscopic colitis for 2 months after the last injection, so she is afraid i'd end up in the hosiptal with IPI....

I am just worried now, about when it is going to end up elsewhere....

She is still so encouraging, and said this doesnt change my prognosis.....but still so scary.

As Josh says, "this shit is unreal".

Any thoughts anyone?

Thanks ofr any input.



Login or register to post replies.

jas02r's picture
Replies 11
Last reply 11/2/2015 - 11:38pm

On August 15th my dad found out he had stage IV melanoma that started on his scalp as a small lesion that grew to about half the size of a gold ball. He also had major liver involvement, hip, thigh, rib and skull bone activity, he also had lymphnode involvement behind the small intestines and small nodules in both lungs. Fast forward to this past week where he endured several scans and a surgery to repair a ruptured ulcer we found out he also had several brain mets that were bleeding that had not been there on the MRI 3 months earlier.

The only treatment my dad was able to receive during his short battle was 2 rounds of Opdivo which caused server liver toxicity so his oncologist had to end treatment. The next option was the BRAF combo but he had tested positive for V600R gene and caremark initially denied the meds but with the help of Dr Sosman and his regular oncologist they finally agreed last Friday to approve them for him but unfortunately it was too late. His body was just too weak for anymore treatment, he hadn't eaten or drank much at all in ten days and the brain mets had bled causing him to lose his speech for a day until the meds were able to shrink the swelling of his brain. His speech returned which we were so grateful for so we could communicate in his last days but it was clear the end was near.

We started palliative care yesterday around 9am and my dear dad passed at 1:48 pm Oct, 22 2015. He fought hard but just couldn't win this battle. I now know more about melanoma than I care to and wanted to thank everyone on this form for all the hope, inspiration and info you've provided over the past several months. My hopes prayers are with each of you fighting this nasty disease.

Login or register to post replies.

scmcelroy's picture
Replies 5
Last reply 11/2/2015 - 11:24pm

God is in the business of Miracles! Many may remember my post several months ago. I was diagnosed with melanoma skin cancer on my nostril of my nose. I had went for a skin screening and the Dr saw something that I honestly never could actually see. She did a biopsy and the thing she thought might be Basel cell was nothing more than fibroid tissue. However she said the biopsy showed Melanoma in-situ.  The Dr wanted to do MOHS surgery,but with Melanoma they would have to send the tissue off overnight and come back the next day (day after day) and have cells removed until it showed cleared margins. I asked if there was anywhere that could do it all in one day and they directed my to a University in NC. I went down there the first of September with intentions of having a consult and the go directly in surgery. That Dr traumatized me with his plan of action. At a minimum, he was going to take my left nostril off and have to remove cartilage from my ear to repair the lost of cartilage and then cut from my nose to the edge of my mouth to do what i found out to be a flap graft. His exact words to me was "I was going to have a "wiener" on the side of my face for a month until they did reconstructive surgery. (After research I found out that this would have been a flap that resembled the size of one of the small cocktail wieners.) Needless to say, I lost it at that point. I couldn't comprehend anything else he had to say. We left his office without having surgery. I have been an emotional wreck since then. I actually had been considering doing nothing, especially since I couldn't see it and it was in the very early stage. My thought process was it may never do anything why would I butcher myself up for this. I started to do a lot of research and blogging and could not find one single person who would agree with me. I scheduled an appointment with my family doctor and he referred me to UVA. I went last Friday for a consult and this dr assured me that he could do the surgery with minimum damage. My surgery was scheduled for this coming Monday, Oct 26 to remove the cancer and then go back a week later to repair the hole that was left. I think I was finally at peace with this decision. Today a very close friend of mine at work told me that he knew I was going to be alright. He had awoke early Saturday morning to a piece of mind that I would be fine. Awaking like this was something he never did. I knew God had spoke to him and it gave me even more peace about the surgery. Wouldn't you know it, 30 minutes after my conversation with my friend I received a phone call from a UVA dr stating that they had reviewed my previous biopsy report (which had been reviewed by 3 other pathologist elsewhere) and they did not see any Melanoma. He called it something else - some long name, but he definitely said it was NOT malignant melanoma. I made him repeat his self to make sure I was understanding him correctly. They however want me to come back Wednesday and do a "punch" biopsy where they will take a small core from the area to check again. No Dr that I have seen would do another biopsy on the area because they were afraid it would get in my blood system. People are questioning how the biopsy could be wrong after so many had looked at it. I just know that the love that GOD has for me (someone not deserving) is beyond being able to understand and I am ok with that. I still need prayers because the devil is trying to make me question this upcoming biopsy. I know there is power in numbers and I know our God is an awesome GOD.  So I'm sorry to be so long winded but I have to let you all know that God is in the business of miracles!



Login or register to post replies.

JoshF's picture
Replies 20
Last reply 11/2/2015 - 10:03pm

Don't have path in front of me but got call earlier from derm. Approx. a 4mm well circuscribed nodlue of melanoma. Stained positive for Melan-A, negative for HMB-45....doesn't appear to be a lymphnode. Lymphocytes present....whatever that means. But basiclly said it's a sub-q metastatic leison. He sent path to oncologist. I'm seeing  oncologist tomorrow....don't think I'll be doing scan tomorrow but I know the drill....just hoping it's just a dermal leison and hasn't spread anywhere else since I had last PET 3 months ago....

This shit is unreal...



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

Login or register to post replies.

gregor913's picture
Replies 17
Last reply 11/2/2015 - 8:48pm

I was just recently diagnosed with malignant melanoma on Oct 29, 2015 and I am 34 years old male. I originally went in to have a mole looked at because after taking a shower I dried off and my wife noticed the mole was bleeding. I made a appointment a few weeks later and told the doctor about it. He examined me and said its probaly nothing but we will remove it anyway because your light skinned with blue eyes.

A week later the doctor called and told me to come in the office. Thats when he dropped the bombshell and I felt so many emotions and feelings going through my head I cried. He said that the pathology report was abnormal and melanoma cells were found in the tumor. He said it was ulcerated and had a breslow thickness of 1.7mm. He also said the margins were negative but I would probaly have to do a wider encision and other tests to see if it has spread to my lymph nodes. Once I heard that It really freaked me out.

He classified me as moderate melanoma and referred me to a oncologist but said he spoke to the oncologist and hes confident he can treat it. Ive been doing alot of reading and I would classify myself as a 2a right now depending the results of the snlb. Im just really scared because of the ulcerated part. Has there ever been a patient who was ulcerated and it did not spread? Is 1.7 a very deep thickness? Does negative margins effect anything? 

I have not had any side effects and my wife has been doing daily feelings of my armpit, neck, and collarbone. I have not felt any hard lymph nodes that would show my body is fighting something.


Thanks for taking the time to read this. My first appointment is Monday November 2.




Login or register to post replies.

Christine.P's picture
Replies 8
Last reply 11/2/2015 - 7:35pm

Many people have posted here about the rash and itching that comes from the Opdivo/Yervoy treatment. Any advice on brands of lotions and soap/body wash that can help?  I start my treatment Monday and would like to have a few remedies in place in case I need something to tide me over until the docs can get me a prescription, etc. 

Any other tips on side effect relief will be greatly appreciated as well...

Thank you!


Christine P. 

Login or register to post replies.

1derdog's picture
Replies 8
Last reply 11/2/2015 - 10:24am

My husband had two Keytruda infusions & his tumor near his pancreas increased. He had another four infusions & his scan showed stability, with a slight decrease & no spread anywhere else.  

My question is is this good progress after six treatments. His oncologist thinks the sweet spot for Keytruda to work is around 10 - 12.  I would appreciate any of your personal experiences and/or opinion.  

Thus board is a heaven sent.  

Thank you

caregiver (wife

Login or register to post replies.

Debbieamccoy's picture
Replies 3
Last reply 11/2/2015 - 10:10am

I'm stage 4 with mets to liver getting yervoy and nivo second round next week. I want to plan a surprise trip to Disney for my children and grandchildren but afraid to plan ahead for April . So far I feel great except for nausea . Anybody with suggestions 

Login or register to post replies.

chrisholder's picture
Replies 2
Last reply 11/1/2015 - 11:11pm
Replies by: kylez, Gene_S

Hello, All,

I am Chris, a 68 year old married male musician living in western upstate NY & brand new to this site.  Diagnosed with mucosal melanoma in the maxillary sinus six months ago in May and quickly joined an expanded access c. trial at Dana Farber in Boston with the Ipi/Nivo dual infusion therapy.  Severe side effects (esp. thyroiditis and hepatitis) forced me out after only two infusions requiring me to spend the rest of the summer recovering from the s. effects.  Began a new course of Pembrolizumab (Keytruda) in Sept and hope this will show some positive results eventually.  Would be interested to hear stories from other m. melanoma patients about their treatments, progress and outlook.  Thanks in advance for welcoming me in here!   

Login or register to post replies.

Jubes's picture
Replies 5
Last reply 11/1/2015 - 3:08pm
Replies by: Jubes, Anonymous, Bubbles

Hi all

Just a quick update on my poly myalgia type side effects that caused me to stop Pembro in August. The rheumatologist and oncologist have decided to treat the symptoms as much as possible before giving me the big guns ( infliximab which reverses the effects of Pembro, though so far from a small sample of ppl treated with that for life threatening colitis it has not affected the benefits of the checkpoint inhibitors) 

So i am continuing on 25 mg prednisone every  day and have been taking 200 mg slow release ketoprofen every day along with regular Panadol  osteo. I am still very stiff and sore but the pain had gone from a 10, where I was virtually paralysed in the mornings for up to three hours, to about a 6-7, where I can get up and enjoy my life but a long way from working, yoga or playing golf!

the next step will be this week now they have checked my eyes and other bloods, they will put me on plaquenil and try to gradually wean me off the steroids that I have been on since May. 

My next pet is in December so I think they want to try all those things and make sure disease has not progressed before they risk infliximab as it was still 3 cm in my lungs stable in August from January 

hope this helps if anyone has similar problems


Login or register to post replies.

sweatergirl's picture
Replies 4
Last reply 11/1/2015 - 12:48pm

My hubby, age 55 with fair skin and numerous moles, went to the doctor for an unrelated matter when she noticed a mole the size of a pencil eraser on his left abdomen.  It appeared black; no uneven edges and not raised.  She used her special light on it and, because she found it to have "numerous colors," she referred him to a dermatologist on an emergent basis.

Two days later he was at the dermo's office and the dermo found another worrisome mole, on his right shoulder.  Both moles were biopsied.  From the path report, it appears that they were shave biopsies.

The diagnosis are as follows:

a: Skin, left abdomen, biopsy:

Compound melanocytic nevus, Clark's/dysplastic type, moderate to severely atypical, focally present at the peripheral margin, see comment.

b: Skin, right shoulder, biopsy:

Irritated compound melanocytic nevus, congenital pattern, see comment.


A.  Definite full transformation into melanoma is not interpreted.  Nonetheless, there is moderate to severe architectural disorder and cytological atypia and consequentely full removal of any residual lesion is recommended. (scheduled for 11/4/15).

B.  There is slight architectural disorder but no significant cytological atypia and the overall findingas appear benign.

Specimen Submitted:

A:  Left Abdomen: Received in farmalin labeled with the pt's name and "left abdomen" is a light tan skin shave with a central pigmentation.  The skin measures  0.8 cm x .7 cm.  The pigmented region is 0.5 x 0.4 cm located less than than 0.1 cm from the nearest resection margin.  The deep aspect is granular light tan.  The resection margins are inked blue.  The specimen is sectioned and entirely submitted in A1.

B.  N/A since it appears benign.

Unknown as to how long this particular mole was there, as hubby has so many.  From my research (thank you so much for this website--what a GIFT!), this was likely caught early enough so as to NOT be cancerous, but.........

My question to the group is how likely is this to be melanoma?  Hubby's parents have both had basal cell carcinoma and squamous cell carcinoma, but no family hx of melanoma.

It would have been better if the dermo had initially done a punch biopsy v. shave, correct?  When she does the removal with two layers of sutures (as her medical assistant described), will it likely be the MOHS surgery or an excisional (like a lumpectomy, for a lack of better terms)?

We will do full body photographs of moles, after this treatment, for comparisons.

Thank you so much for reading my post and the feedback.


Login or register to post replies.

Hi All, 

In 3rd week of taf/mek combo. Having low fever (99-100), chills, dizzy and fatigue. Think I may call onc to report to see if there is something to ease the fever/chills occuring during day and night. Has been consistent the past 3 days/nights.  Currently can only treat with Tylenol because of meds I take for auto immune disease.

Trying to stay optimistic telling self meds are working which is why I'm having side effects! I'm worried he will lower dose which I dont want to do-I can manage, if I have to. Does that make sense?

Thanks for any input!

Do not fear tomorrow, God is already there.

Login or register to post replies.

Christine.P's picture
Replies 6
Last reply 10/29/2015 - 11:39pm

I start my first dose of the combo on Monday and was just wondering how long the treatment takes. I've seen one person say the treatment is 2-1/2 hours long and wondered if that varies by person and dose or if that's pretty standard.

Also - are all four doses of the combo the same duration? I feel lucky that I get to try this new combo, but am also getting nervous. I know side effects vary quite a bit, but the waiting to see what will happen to ME is a little nerve-wracking. I try not to think about it most of the time, but it does creep into my thoughts. 

Thanks to all of you on this forum. I appreciate the honesty, candor, and support shown to everyone who posts. 

Christine P. 

Login or register to post replies.

JimsWife's picture
Replies 33
Last reply 10/29/2015 - 9:29pm

My husband passed away on September 18th, just 9 months after his diagnosis. A brief history: primary mole diagnosed melanoma in situ in 2007, became symptomatic and discovered on December 23, 2014 that it had metastized to his brain, lungs, and spine. He did WBR, SRS, Temodar, and the tafinlar/mekinist combo.

He entered the hospital on Tuesday September 8th (1 day after our 2 year anniversary) and came home to pass away 10 days later. When he entered the hospital, he displayed stroke like symptoms, which was actually a focal seziure and continued to have massive seziures that left him immobile and unable to speak by the time he got home. We always knew the combo would stop working at some point and when it did, we had plans to do more radiation and Keytruda. However, the cancer progressed too fast once we realized and the seziures were too frequent. We didn't have time to react.

He leaves behind his 3 month old daughter and myself (along with 4 brothers and his parents). The world truly lost a great man. He was 35.

I visited these boards regularly and am thankful for all of you who continue to fight the good fight. Keep fighting. I will pray that all of you that are plagued by this awful beast of a disease can one day live melanoma free.

With love,


Login or register to post replies.

Tim--MRF's picture
Replies 1
Last reply 10/29/2015 - 7:57pm
Replies by: kylez

Fair warning--this will likely be a long post!

In the past three weeks or so the FDA has issued three approvals relevant to melanoma. This is great news, of course, but it does raise a number of questions. Iam not a doctor, but have some thoughts on these changes.

Ipi/Nivo:  First was approval of the combination of ipi plus nivo (also known as Yervoy and Opdivo) for Stage IV patients. Ipi was approved as monotherapy in 2011, and nivo was approved last year. Results of the combination were all the buzz at the big cancer meeting, ASCO, this past June. Response rates were over 50%--numbers unheard of in melanoma. But side effects were a major issue, with more than half of patients experiencing problems that led to ending or postponing therapy. Even patients who did not take the full course, though, seemed to have good response rates. A lot remains to be learned about these drugs, and how to make the combination as successful as possible. Still, this is the approach that seems to be the first option for many oncologists now.

T-Vec: This was approved earlier this week. It is a modified Herpes Simplex 1 Virus (HSV-1). HSV-1 is the virus that causes cold sores (and not the virus that is a sexually transmitted disease!). A virus is miniscule in relation to a human cell. This virus only has a few genes. One of those genes blocks the ability of normal human cells to fight off viral infection. In T-Vec, scientists have removed that gene so the virus can no longer infect normal cells. Cancer cells don't have that ability, so the virus can infect them. The virus sticks on the cell surface, opens a hole in the cell membrane, and injects its own genetic material into the cell. That material takes over the cell division functions of the cell and causes it to create more viruses. Ultimately so many viruses are created they burst open the cell, then go out to infect other cells. So, T-Vec preferentially kills cancer cells. But it does more. When the cells burst open the remnants of the cell create a debris field of antigens that sensitizes the immune system to other tumor cells. But T-Vec has one more trick up its sleeve. Remember the deleted gene? Scientists replaced that gene with a different gene that produces GM-CSF, a compound that stimulates the immune system. So T-Vec kills cancer cells, trains the immune system to find other cancer cells, and stimulates the immune system. Sounds great, but the results are somewhat less impressive. T-Vec must be injected in the lesion, and even then the response is mixed. It seems to work best in people with injectable lesions and low tumor burden. Having said that, it is likely to be a major player in the future. If you combine T-Vec with another immunotherapy the results look much better. This could be ipi, one of the anti-PD1 drugs, or even IL-2. Also, it may be possible to inject lesions inside the body (in the liver for example) using ultrasound or some other technology to guide the needle.

Ipi Adjuvant: Finally, today's announcement that the FDA approved ipi for use as adjuvant therapy. The data are clear that ipi reduces the likelihood of recurrence. Some problems exist with this study, though. First, the study did not compare ipi against interferon. This is because some of the sites were in Europe, where Interferon is almost never used. A new study is underway as a head to head of ipi vs. Interferon and that data will be important. Second, the study had a lot of side effects, and even some deaths, among the study group. Finally, (and this may be related to the above) the study was done at a much higher dosage of ipi than is now used for Stage IV treatment. Current approved therapy for Stage IV is at 3 mg per kg of body weight. This adjuvant study was done at 10 mg per kg of body weight. At the time the study was designed some researchers felt the higher dosage would give better results. Further work showed that the added benefit did not outweigh the added severity of side effects. The higher dose for adjuvant work has two issues. First, it may well be that using ipi in the adjuvant setting at the 3 mg/kg dose will result in fewer side effects. Second, because of government regulations, the company cannot discount the price for the higher dosage. They must maintain the same price structure on a $/mg basis regardless of the dosing. This will result in a price per infusion that is more than three times the cost of ipi used for Stage IV patients. The company knows this is not acceptable and so have initiated a novel program. Stage III patients who decide to take ipi to try to lower their risk of recurrence are encouraged to enroll in a special program. Once enrolled, all of their drug is completely free, regardless of financial situation or insurance coverage.  This is a bold step for the company to take, and hopefully everyone will get the information about this program before experiencing significant costs. The program only applies, though, to the approved dosage of 10 mgs/kg.

OK, that was a lot of information. I hope it helps clarify matters a bit. 





Login or register to post replies.