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 4
Last reply 9/9/2015 - 10:05pm

I recently had a PET scan that welcomed me to the stage 4 club.

I have a small met on L2 and one small met 5mm on the liver and some lymph node involvement in the groin.

I met the oncologist today and he wants to start me on Keytruda next week.

He told me that even thou the statistics show only 30 percent response that this is for shrinkage and that he is getting a lot of people that remain stable whilst on Keytruda and that being healthy to start with and with a low tumour burder is a big advantage.

He said if i dont respond he will put me on Opidivo and/or Ipi.

Keytruda is only 30 odd dollars per infusion.

Hey says that I am lucky because it was only just recently approved here in Australia.

I am a bit worried about the side effects but he seemed to downplay them saying most people dont seen to have too many issues with the drugs.

Any tips from people out there pre infusion would be appreciated?




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Anonymous's picture
Replies 1
Last reply 9/8/2015 - 10:30pm
Replies by: CHD

I have a mole on my arm that has been there as long as I can remember. The Dr measures it & checks it good when I am there which is now every 3 months. I'm worried it could become melanoma even if not making changes. I plan to have a biopsy done but does anyone have experience with this

Melissa Riley

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mkirkland's picture
Replies 16
Last reply 9/16/2015 - 4:33pm

Hi - I have stage 3 nodular melanoma. I am scheduled for lymph node dissection of the right groin this Friday along with another wide excision in my foot. Any tips on an easier recovery? Pretty nervous about the pain and down time.

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akamo's picture
Replies 4
Last reply 9/8/2015 - 2:51pm
Replies by: DZnDef, ET-SF, Anonymous, Colleen66

Hi. I am wondering what others thought about drugs that suppress the immune system? My husband has psoriatic arthritis (and psoriasis) and was put on low dose prednisone because he was in so much pain that he couldn't function in everyday life. Within about 4 months of starting the prednisone he developed melanoma. He has since went off of it because we thought it would slow his recovery (stage 1A with a WLE). As of now, he is back to being in excruciating pain. Is there anyone in this group who has arthritis and takes prednisone or methotrexate? I have read that they both can cause melanoma so imagine he would have a greater chance to get it again. Thoughts? Thanks-Robin

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stars's picture
Replies 6
Last reply 9/9/2015 - 2:35am

Hi - this is kind of a trivial post in the scheme of things but I wonder if others can relate. Since March I've had 3 WLEs, so three big scars - one is pretty much hidden in my normal clothing (upper thigh), but the other two would be quite visible if I wore, for example, a short sleeved shirt.  When I had them done, just within the last few months, I bought some new tops that cover them (elbow area and upper chest). Its becoming quite an effort to keep them covered as the weather is getting warmer here, but I'm intensely uncomfortable showing them or having to tell my story to well-meaning colleagues who ask. I'm only just coming to terms to what happened to me (3 synchronous primary melanomas) and I'm not ready to share. That, and I find them ugly. Does anyone else have any thoughts on this? I'm in a very public job and I'm sure I would get either stares or queries from well-meaning people, I"m just not ready for that.

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Rita and Charles's picture
Replies 5
Last reply 9/7/2015 - 7:24pm
Replies by: Anonymous, Wheels1994, Rita and Charles, mrsaxde

I think that I must be crazy asking this question...I'm super straight, but my husband has chronic pain  from broken back, leg, etc - struffling for yearsm and it seems like the BRAF combo had amplified it.  He can no longer walk our dog and we are so happy that the combo is shrinking the tumors but life is still filled with pain. 




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michaelinsocal's picture
Replies 6
Last reply 9/8/2015 - 3:02pm
Replies by: DZnDef, michaelinsocal, Patina, khubes, Julie in SoCal, Anonymous

Diagnosed at the end of '13. Spindle Cell Melanoma on left ankle, staged (and current) 3A. 

Im getting my second set of scans (CT/MRI) next week and want a specialist to review them and the course of treatment that I've undertaken. 

I live out in the lower Southern California desert (Palm Springs area). Can anyone recommend a melanoma specialist with excellent reviews, preferably within a 1-2 hour drive from here? 

Many thanks in advance.


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msitz's picture
Replies 9
Last reply 9/15/2015 - 12:33pm

My father was diagnosed with stage 4 melanoma in March of 2015. He initially presented in February with abdominal pain and had a chest X-ray taken in the emergency department that revealed multiple lung metastases. Unfortunately that X-ray wasn't read and he was told that his pain was probably reflux and sent home. He then went on a 3 week trip through Africa where he continued to have the pain. The day after he returned, his family doctor (who is also one of his closest friends) came over to his house to tell him that he received a report from the chest X-ray in the emergency department stating that there were 3 lung masses consistent with metastatic cancer. 

We went back to the hospital for further imaging and found out that my father had bowel, lung, subcutaneous and lymph node involvement and after a non-diagnostic lung biopsy he had a lymph node biopsy confirming the diagnosis of metastatic melanoma. His CT head was initially negative but he later had an MRI showing a 12mm brain mass. He never had a skin lesion. He is considered melanoma of unknown primary. 
My sister is a physician and after looking at the scans it was clear that our otherwise healthy 59 year old father didn't have very much time left if we didn't act very quickly. His largest lung tumour was around 8cm and he had multiple huge bowel metastases that put him at high risk for bleeding and perforation. We live in Canada and PD-1 inhibitors weren't approved yet. It is also impossible to get IL2 where we are. His treatment options here were very limited and he was given a prognosis of 2 months to live at diagnosis. We decided to leave Canada and go straight to MD Anderson for their opinion on what to do.
We had our first meeting with Dr. Wen-Jen Hwu several days after our fathers diagnosis. I could not have more positive things to say about her. She was positive from the start and immediately gave us hope. She genuinely cared about our father. We didn't have his BRAF testing back at the time of his initial consultation and she wanted to wait for the results of mutation testing prior to deciding on a treatment option. 
Unfortunately prior to his BRAF status coming back (just 3 days after our initial consult with Dr. Hwu) my fathers bowel perforated from one of his tumours. He was seen by Dr. Ross, one of the melanoma surgeons at MD Anderson who elected to conservatively manage him with IV antibiotics and bowel rest. His bowel disease was so extensive they couldn't tell where he perforated and where the free air was coming from. They wouldn't know where to start or stop cutting. It is also very difficult to approximate cancer infiltrated bowel with cancer infiltrated bowel which would make reconnecting his bowel after a resection very difficult. We didn't know whether his bowel would reseal itself or if it would keep leaking and we would lose him. Fortunately he recovered and he had an intraabdominal abscess aspirated by interventional radiology. 
While in hospital his mutation status came back and we found out that he was BRAF, NRAS and KIT negative. Dr. Hwu decided to start him on Keytruda which we paid for out of pocket. His first dose of Keytruda was very tough and he ended up back in hospital with another near bowel perforation. His tumours on his scan several days after Keytruda were significantly bigger than just a few weeks prior and we hoped that this was an immune response and not very aggressive tumours. 
It wasn't an easy road but my fathers response to Keytruda has been remarkable. He is back to going to work every day, he played an hour of tennis without a break last week, and he goes on 5+km walks daily. His most recent CT chest was reported as "substantial interval regression in multiple pulmonary metastases". His over 8cm tumour is now 4.8cm, the 2.2cm tumour shrunk to 1.2cm and 2.6cm tumour shrunk to 5mm. His abdominal CT was also very positive with everything either stable or dramatically smaller. Also, his brain metastasis has shrunk from 12mm to 6mm. Why we elected not to radiate the brain metastasis is a little bit complicated but I'm happy to share if anyone wants details. His only side effects are some fatigue, itching and vitiligo. 
Just wanted to share a currently positive story and give others some hope. My father was at deaths door several times over the past few months and there were a number of times where we thought we were going to lose him. It is unbelievable to see what Keytruda has done for him. He is healthier than he has been in ages and he has his old life back. We owe everything to the outstanding team at MD Anderson. They definitely saved my fathers life. 

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arthurjedi007's picture
Replies 6
Last reply 9/8/2015 - 3:30pm

Like all this stuff it doesn't work for everybody. But apparently if some mutation they call sage3 is inhibiting your pd1 or other treatment from working this might help. Of course you have to have that mutation and the oil has to be of a type that inhibits that mutation which apparently the brand of frankensense they tested does. They didn't say what brand but thought they all have it.

Just rub it on any tumor you have that is close to the surface or on the surface. Even the kidneys if you have tumors there like me. Do not drink it just rub it on. Might not work but it can't hurt.

There is also a trial coming up for sage3 systemically but hasn't started yet.

Im not usually one to promote natural remedies although I believe in them I'm just too cautious and not smart enough to know the real from the fake. But when the doc explained it I figured I should share and maybe it will help someone. I got mine ordered and hopefully it will arrive at the hotel Monday.


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CHD's picture
Replies 14
Last reply 9/21/2015 - 12:02am

Haven't seen her here for awhile.   Enjoy her posts!  Has anyone heard from her?  Is she doing ok?

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Scooby123's picture
Replies 7
Last reply 9/13/2015 - 3:31am

Hi has any experience thyroid issues when had ippi. I have had my normal 3 month  bloods for vitamin D and thyroid but my GP called and said my thyroid was high. I said I have had treatment which could be a side effect so she going to send letter to my consultant to ask if I need to go on treatment or re do bloods in 3 months to see if resolves it self. Now I know why been tired more than usual. 


take care all ❤️

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Lisa - Aust's picture
Replies 8
Last reply 9/7/2015 - 5:33am

Hello Everyone, 

Just wondering what kind of side effects those who have stopped PD1 have experienced. 

My husband has been off treatment for a couple of months (after being on for around 1.5 years) and is experiencing 'tingling' of feet, hands and face - he describes it almost like his body is vibrating at times. While on treatment he also developed tinnitus, but the Drs and specialists are saying it's not related to the drug. Just curious if anyone has experienced similar sensations. He's just been checked out scan wise, and is all clear. 



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jonathanmole's picture
Replies 3
Last reply 9/5/2015 - 10:21pm
Replies by: Mugglemum, stars, Kim K

Hi! I just found this mole on my left leg, I was startled to see black dots in the mole itself and scheduled a meeting with a dermatologist, but sadly it's gonna be at least 3 weeks til I see him. I am so worried about what this might be. I just want to get some feedback on what to expect and what you might think this is. Thank you.

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davidstewart's picture
Replies 12
Last reply 9/6/2015 - 2:04pm

Hi everyone!

I'm new to the forum. Really glad this resource is available. I caught a stage 4 melanoma diagnosis this Monday. We met with Dr. Stergios Moscos today at UNC Chapel Hill--very nice, informed melanoma specialist. He suggested a treatment plan but was supportive of our desire to get a second opinion.He offered six suggestions. I'd be grateful for any input that could help us decide about which choice to make for deciding about how to proceed.

Dr. Stephen Hodie at Dana Farber

Dr. Keith Flaherty at Mass General

Dr. Jedd Wolchok at Sloan Kettering

Dr. Jeffery Weber at Moffit

Dr. John Kirkwood (his mentor) at Pitt

Dr. Suzanne Topalian at Johns Hopkins.

We had been advised to seek out clinical trials as that is state of the art but Dr. Moscos took the view that some of the conventional treatments should be tried first.

Anybody out there have suggestions?



David Stewart




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Jackfish's picture
Replies 8
Last reply 9/14/2015 - 5:24pm

I had surgery to remove a Melanoma on the top of my head. It was 5.46MM deep with a Mitotic index of 12 and ulcerated. A SNB was performed at the time of surgery along with a skin graft. The biopsy results were negative for the SN and two additional lymph nodes in the neck. The deep  margin at excision and at periphary are negative for Melanoma. Due to depth of Melanoma and location the probability of recurrance is indicated high. I was recommended to have 5 Radiation treatments on area of excision and take the Interferon Alfa regimen. I am three weeks post surgery and trying to determine wether Rqdiation and Interferon should be taken. I go for a Pet scan of whole body today. I would appreciate any comments and input as I navigate how to move forward.

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