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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blairashley's picture
Replies 12
Last reply 6/3/2012 - 8:49am

Can someone point me toward some streches for after a total LND in my right arm?  I'm only 12 days out, but I can barely lift my arm.  My armpit feels like something was sewn too tight and my range of motion is gone.  I can see something long & skinny in my armpit that sticks out when I lift it at all. I definitely realize that I am not speaking in proper medical terms -- just describing the sensation.  Thinking that physical therapy might be necessary, but would love some at home techniques. Thanks!

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Carla Edge's picture
Replies 3
Last reply 6/3/2012 - 1:56am

I am new to this board.  My husband is stage IV with a met on muscle around his small int.  He was diagnosed in Jan and was randomized into the TIL study at the NIH.  So far, they can't tell if the tumor is growing slowly or just changing shape.  We are deciding this week the next step to take- likely ipi.  Roy was feeling pretty good after release from hospital.  Two months later, he feels lousy.  He went from a rather normal existence with an afternoon doze to flat on his back on the couch most of the day.  Nothing seems to cheer him up.  Docs said to expect him to go backwards, but we didn't expect it to be this terrible.  I've tried to be supportive, but find myself acting impatient and "witch-like" sometimes.  Is this the proper forum to vent about all of this, or is there a similar board for spouses/caregivers?  I love reading posts on this board.  Thank you for sharing all of your stories.  They all give inspiration in one way or another.  Thank you all!

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blairashley's picture
Replies 16
Last reply 6/3/2012 - 12:31am

Hi --

I'm going under on Friday to have all right underarm nodes removed after my sentinel node was positive for spitzoid cells.  What can I expect?  I know I'll have a drain.  Sorry for the vague/general question, but all I can find are lymphadema & other horror stories via Google.  Anyone care to share their experience? 

How does recovery compare to wide-excision + SLNB?  I only rested for 3 days after that one, although my incisions are still sore 3 months later.

Also, I am supposed to fly in mid-June... will that be safe?  I'll ask my doc of course... just curious now.


Blair, newly IIIA

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Tim--MRF's picture
Replies 2
Last reply 6/2/2012 - 10:22pm
Replies by: Gene_S, Phil S

Many of you will know that ASCO is the annual meeting of oncologists, pulling together some 30,000 doctors from around the world.  The meeting started this morning, and one of the 8:00 sessions was on sequencing treatment for metastatic melanoma.  Here are few highlights:

--Mike Atkins talked about immunotherapy, both the use of IL-2 and Yervoy (ipi), and also the clinical trials with anti-PD1 and anti-PDL1.  These all show promise.   He talked about a small study comparing people who were given Yervoy first, then if they showed progression of disease were put on a Zelboraf, vs. people who were given Zelboraf first then Yervoy.  The group who were treated with immunotherapy first (Yervoy) did better than the people who were given targeted therapy (Zelboraf) first.

--Keith Flaherty then showed data about Zelboraf and other targeted therapies for people who have BRAF mutations.  This includes adding a MEK inhibitor, or using other pathway blockades to treat people who have stopped responding to Zelboraf.  He pointed out that treating with immunotherapy first carries some risks.  Some patients have tumors that are growing too rapidly to wait for an immune response, which can take 2 months or more.  And some data shows that during immunotherapy the cancer evolves into a more robust form that may be harder to treat with targeted therapy.

--Jeff Sosman then talked about patients who do not have the BRAF mutation.  BRAF mutation occurs in about 40% of melanoma patients.  Another 18% have NRAS mutations, and 1-3% have KIT mutations.  This leaves almost a third of patients who have no known driver mutations.  This group may benefit from some more broad based targeted therapy, most of which is still in early development.  Some may actually have known mutations, but not at the normal spot.  Most BRAF mutations occur at a place called V600e, but he has found a patient with a BRAF mutation at a much different location.  And, of course, immunotherapy remains an option for these patients.

The bottom line is that we still have much to learn.  The consensus seems to be that if a patient has the time to wait, immunotherapy may be the first line of attack, and for very healthy patients that may mean starting with IL2.  Still, a lot of disagreement in this approach.  This makes treatment decisions challenging for doctors and even more challenging for patients.

The good news is, we have a few things in place and several things in development that all have some impact and, in some cases, significant impact.

More to follow.



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Here is the link to the NEJM    its a PDF link....Yes!!! regarding melanoma those who responded  it says to the effect..." Most responses were durable"...!!  

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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My husband Mike recently under went ACT with IL2 treatment at Moffitt Cancer Center. The Tumor Infiiltrating Lymphocytes were infused followed by 8 infusions of IL2. He experienced some side effects - kidney function damaged, delirium, rash, edema, rigor, etc. It has been 2 weeks now and he gets better each day. He was diagnosed stage 4 recurrent metastatic with internal and some subcuteaneous tumors. The ones we could see are gone so we are hopeful the 6 week scan will show the internal ones are reduced, dead or gone also. One strange thing, rather than blurry vision, his vision has improved to where he sees better without his glasses now. Onc, said he had some patients who said the same thing after surgery but not after IL2.  Anyone ever heard of IMPROVED vision? He had to get glasses for the first time in Jan. about the same time he learned that he had recurrent melanoma (1st time was 2000 treated with excision and interferon). Wonder if the cancer was the cause back in Jan. and if tumor shrinkage now sent vision back to what it was before. No mets on brain MRI. just wondered if anyone had heard of this "side effect" before?

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hbecker's picture
Replies 3
Last reply 6/2/2012 - 11:44am
Replies by: Anonymous, hbecker, lhaley

Hi, we're new here - new to melanoma and just learning. My husband's case is atypical - no sign of melanoma on the skin, just a mass removed from under his scalp. The path report doesn't include depth or thickness - just says that a "primary dermal melanoma gross measurement 9.5mm" is possible. "Large nodule filling the dermis with central necrosis composed of mitotically active, S100 positive, focal CD68 positive epithelioid cells." Also, immunoperoxidase stains found positive for nerve growth factor receptor and SOX 10, negative for Melan A and HMB45.

Does anyone know what those things mean?

Thanks for whatever you can offer.

blogging at

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Anonymous's picture
Replies 0

Lisa, How did you procedure go on your brain??? Sending you positive thoughts.

Anyone hear from Lisa about how she is oing afterher brain procedure???


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Anonymous's picture
Replies 2
Last reply 6/2/2012 - 7:47am
Replies by: Anonymous, AlisonC

what does 'partial focal regression' mean melanoma pathology report?  is it an independent prognostic indicator?  why would one report say this, and another opinion says "tumor regression: absent" ?

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Anonymous's picture
Replies 5
Last reply 6/2/2012 - 4:46am

I think most cancers talk about 5 and 10 year survival rates.  I'm not sure, but I think they do 5 year because with some cancers if there is NED after 5 years, doctors will say they believe the person to be "cured."  Of course, we know melanoma does not fit nicely into that category because it can come back after many many years.  So, then, why for melanoma don't they put survival rates down for 15 or 20 years?  Like, an in-situ or 1a or 1b 20-year survival rate? 

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Anonymous's picture
Replies 2
Last reply 6/1/2012 - 11:50pm
Replies by: Swanee, Janner


I am Stage 1b patient with 8 years post diagnosis. I just accidently discovered a lump in my hip and I am scared to death about possible subcutaneous tumor. I found it when I accidently touched the area, it is completely under the skin, not protruding from the sking and nothing is visible on the surface. This lump is small (about 5 mm?) but I cannot completely feel it's shape (take between my fingers); not sure if it is attached to something deep and whether I can move it around. It is not hard but ruther firm. Well, I made an appointment with my melanoma specialist in few days but this waiting time is killing me. I continue to touch this area.... What is might be???? I am scared.

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H555's picture
Replies 7
Last reply 6/1/2012 - 10:59pm

I had my first scans today after starting Zelboraf 8 weeks ago. had to go to 1/2 dose in the first 10 days because of skin reactions and 3 weeks ago began adding back one pill a week. today I'm hat 4 pills in the am, 3 at night. I've only had 3 days of joint pain. I'm losing some hair, head hair is changing texture, i have a ton of skin tags and most of my moles are changing. when we started this I had a collapsed upper left lobe, panted to breathe and coudln't finish a sentence. i was pretty sick and pretty worried.  I had one 3.5cm met, most of the many others were pretty small but too many to count. Today almost all the right lung is clear, the left lung has very few observable mets and the 3.5 cm one that was blocking the airway is about half that size and the airway is unobstructed and the lobe has reinflated. and I feel great. other than increasing sun sensitivity i've begun doing "retirement" things. My radiation onc dr called 4 hours after the CT scans were done. I have great skilled compassionate docs, a great supports system, people all over the world praying for me. I'm a very fortunate many. I hope all of us get to this point and better. I'm eager to see what comes out after the ASCO conference next week. and I'm thankful to have found this board.

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Ashykay's picture
Replies 8
Last reply 6/1/2012 - 3:48pm

Unfortunately I am here to post sad news about my Mum. Mum had been on Yervoy up until around February/March 2012. It was hard to say whether it was working, though she showed signs of an immune response - e.g. rash, heavy foot, some other side effects (though not particularly significant). Unfortunately her larger tumour on her spine eventually restricted her ability to walk and she became wheelchair bound.

Mum got to enjoy a fantastic holiday with my Dad in late March/early April. Upon her return, she was not feeling right, and it was discovered that after almost 11 months of jher sacrum tumour just growing where it was and not "spreading", it had spread to her stomach, kidney and liver as well as her upper body. After the controversy of Yervoy (ipi) being rejected on the Australian Pharmaceutical Benefits Scheme around the same time, I proactively campaigned against this decision so that people like my Mum would have subsidised access to Yervoy again even after their tumours had spread elsewhere. This would have been a different start for Mum, as they finally could safely access some of her tumours to do a vaccine + Yervoy (when before they could only do a vaccine with other people's tumours + Yervoy due to the location of her initial tumour). Unfortunately we did not get time to take this further nor even to try raise the $120,000 it would've cost to go on Yervoy again.

Sadly, Mum quickly deteriorated within the month, and on 16 May 2012, she passed away at home with all of her family by her side (as she wished). She is deeply missed and we are all lost without her. Not sure how we will go on in future, but my campaigning of the PBS decision and other melanoma treatments I hope will bring some meaning to my purpose in life, as well as the love between my family, who I believe are far closer due to Mum. A researcher is doing research into Mum's melanoma (melanoma with an unknown primary), who connected with Mum's story, and is doing fundraising for his research in her honour, which is truly inspiring. I know Mum is proud of everything we have done, and she will never, ever be forgotten. We love her SO very much & she was just such an amazing, inspiring and beautiful person.

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bruski1959's picture
Replies 6
Last reply 6/1/2012 - 3:33pm

Jackie had her 4th Yervoy infusion 84 days or 12 weeks to the day from her first Yervoy infusion. Had to delay the 4th treatment while Jackie completed a round of antibiotics for pneumonia. As usual, Jackie has had a lot of fatigue. Had nausea too that was treatable with anti-nausea meds. Next oncology appointment is in 10 days. Expect to get the next PET/CT scan scheduled soon to compare with the last scan done in January prior to the first Yervoy infusion. Hoping and praying that the melanoma tumors in Jackie's left axial lymph nodes, lungs, and liver have responded well to the Yervoy treatment. We're coming up on six months since Jackie's stage 4 diagnosis. We're counting down the days to our 20th wedding anniversary. We will be renewing our wedding vows with friends and family on June 9th at our home church.


Bruce and Jackie

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lhaley's picture
Replies 7
Last reply 6/1/2012 - 11:28am

Yesterday I went for CT scans and a brain MRI.  The news was mixed.    The CT showed the lung nodule has remained stable so we are waiting again.  It's now been about 18 months with only growth of a few mm.   The brain mri was a follow up from 8 weeks ago when they weren't sure if I was having a recurrance, necrosis or scar tissue.  The good news was that it was scar tissue and is shrinking!!!    Since this is deep in the brain it would be difficult area to remove again.  The bad news was a new met.  This one is small..... 3.3mm. It is in an area to get to.  Last time my large tumor responded at 4 months by killing 70% of the tumor so I am hoping this time it blasts it away much quicker with no issues.  I had the crainectomy because of the edema and how the steroids were wasting my body.

This met is so much smaller and at an easier area. The best news is no steroids!   I do admit that I'm upset that another one has shown up so quickly.  Hopefully this will occur next week.  The receptionist has not called yet to schedule. 

I am still having some issues from the last tumor.  Neck issues, off and on eye problems, weak knees ect.  I have an appointment on Monday with a Nuerologist who will hopefully help me deal with these issues. 

I was offered a trial with dabrafenib but choose to stay with the SRS. 


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