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 10
Last reply 2/6/2015 - 11:55am

My grandfather was recently diagnosed with Metastatic Melanoma. A brain tumor was found in the cerebellum and CT showed multiple nodules and a large mass in my lungs. After lung biopsy I was diagnosed with Metastatic Melanoma. I found a melanoma specialist for him who immediatly sent us to a neuorosurgeon. The next day my grandfather went through a 6 hour brain surgery to remove the tumor. Everything went really well!! I was so extremly nervous for my 83 year old grandfather to go through something as tramatic. Believe it or not he was walking the very next day. Now that the brain tumor is removed he has to have 5 treatments of radiation to the site. We were originally told he only needed one treatment of radiation but the Dr thought it was safer for him to break it up into 5 because of the incision size and his age. That started today. But the one I am really really worried about is the Yervoy. He starts that tomorrow and is also getting some pills (forgot the name) that he has to take at home before bed. The Yervoy is only once every three weeks. After reading up on it I am so very nervous for him to take something so risky with so so many side effects. I dont think I have read a single good thing about it. Has anyone had any experience with this good or bad. It will be very helpful to have some extra insite or to get a heads up of what to look out for. Although my grandfather is 83 he is a very young and active 83. This is why we are trying to fight this. But if the quality of what he has left of life is bad then I dont know if its really worth it. 

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arthurjedi007's picture
Replies 7
Last reply 2/6/2015 - 6:06am

Dunno if anyone has had this and more importantly something that helped with it.

For about a week it hurts every time I swallow. It's like the top left part of I guess the Adams apple part or whatever is the swallow part about the size of the end of my little finger just hurts every time I swallow. You would think with all my other more serious issues I got going on this would be nothing but it is the one driving me crazy.

I assume it was caused by the radiation because they were right next to my throat like less than a eighth inch. I thought it would have started getting better by now because they ended radiation to that area almost a week ago.

Sorry to bother with such a minor problem.


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newmanmark's picture
Replies 4
Last reply 2/5/2015 - 4:01pm


I live in Toronto, Canada and I have stage 4 melanoma.  I have a single tumor on my pancreas that measures 8cm in length.  I have been dealing with it since 2012.  So far it has not spread beyond the pancreas but it continues to grow and will soon cause problems.  I did Interferon for 7 months in 2010 when I was first diagnosed.

The options for me in Canada are;

1.  BRAF - I am BRAF positive (Vemurafinib or Debrafinib)

2.  Ipilimumab

3.  Clinica Trial - includes a BRAF and a MEK Inhibitor

If I fail on a BRAF and Ipilimumab then I qualify for Anti-PD1 under compassionate use.  It is not yet approved in Canada.

The other option would be to look for a clinical trial with Anti-PD1 in the US.  I am looking for some informed opinions on how I should proceed.  Also, if anyone knows of recruiting clinical trials in the US I would be interested.

Thank you


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alfreym1's picture
Replies 9
Last reply 2/5/2015 - 6:15am
Replies by: Linny, alfreym1, Anonymous, Cynthia C, Prd10, SABKLYN

I was diagnosed with Stage 3a in 2007 while pregnant with my first child. Soon after he was born I underwent 3 surgeries(excision of the mole area, lymph node biopsy and later the complete removal of my lymph nodes because 2 came back positive). I went through 1 month of intensive immuno/chemo therapy followed by 11 months of interferon treatment.  I am glad to say that I've been clear since 2009 but I still suffer from anxiety. Lately, my anxiety has been worse because I am pregnant with my second child and I'm concerned that the hormonal changes may cause recurrence.

Occasionally within the past 3 to 4 years I have experienced unusual symptoms that somewhat resemble MS symptoms. I have seen 2 different neurologist during the episodes but they've both told me I do not have MS. Although they couldn't tell me exactly what is going on with me, they did mentioned it could be stress/anxiety induced. The most recent neurologist I saw mentioned it could be long-term effects from the treatment but she also brought up that typically if there is any nerve damage from treatment, it is not episodal like my symptoms.

Has anyone else experienced this!? Any feedback will be much appreciated.



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cbe's picture
Replies 4
Last reply 2/4/2015 - 2:25pm

I want to share my husband's experience because I've seen questions about this and I think I even posted a similar question once. After being diagnosed stage 3C, NRAS positive, he went on ippy (Yervoy) and after just 3 months it metasticized to the liver. At that point he stopped ippy and went on PD-1 (Keytruda). He had many symptoms come and go-- extreme fatigue, nausea, itchy skin, metalic taste, GERD, fevers, night sweats --it was hard to sort out whether these were side effects of the Keytruda, the prednizone that was presribed to deal with the symptoms, or the cancer. After 6 doses of Keytruda, scans showed that the liver lesions had increased. Fortunately, we got him into the TIL program at NIH which meant that he needed to stop Keytruda and all steroids. He went through the surgery at NIH to harvest the lymphocytes from his lymph nodes, but right before starting the second part (chemo) they did scans and lo and behold they showed that his liver lesions had decreased significantly. This was now nearly 2 months after being off Keytruda and a month after scans had showed no change. They sent him home from NIH, since his immune system was fighting the cancer on its own. No one can really provide an explanation, but it seems that maybe Keytruda can have a delayed response, or going off it may have triggered something.

I hope this is helpful to all who are out there waiting and questioning whether its working. Sometimes you have to make hard decisions--we made the decision to stop Keytruda and pursue TIL rather than risk further progression, but it seems it may have been working after all. Also the inflammation seems to have really flared up around the 6th dose right before it started working--that's when he had the scans and felt the worst. We know this fight is far from over but are now very hopeful to finally see shrinkage. 

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Nell's picture
Replies 11
Last reply 2/4/2015 - 2:08pm

Just checking up on you.   How is the swallowing?  Looking for an update.....Blessings.

One voice can make a song; one life can change the world.

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Anonymous's picture
Replies 2
Last reply 2/4/2015 - 12:29pm
Replies by: Anonymous, arthurjedi007

Does POW post anymore, always gave such great advice especially to newcomers, haven't seen anything in a while

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POW's picture
Replies 6
Last reply 2/4/2015 - 12:27pm
Replies by: Anonymous, BrianP, MoCedar, JustMeInCA, kpcollins31, JoshF

Some of you may remember Don Lee of Worcester, MASS. Don was diagnosed out of the blue with Stage IV including brain mets almost 2 years ago. Don and his wife Janet fought valiently. He tried every available treatment and benefitted from most of them. Surviving 2 years with a widely disseminated melanoma is remarkable and he made the most of his time. He got to dance at one daughter's wedding and to see his first grandchild born and begin to walk. He enjoyed walks on the beach with Janet, downsizing to a gorgeous condo with no upkeep, and celebrating their 40th wedding anniversary and Cecelia's first Christmas. But eventually the cancer won out. He passed last Thursday. Here is a very nice obituary for Don Lee online. 

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Anonymous's picture
Replies 0

Taking place under the tagline “Not beyond us,” World Cancer Day 2015 takes a positive and proactive approach to the fight against cancer. The day raises awareness and highlights that solutions do exist across the continuum of cancer, and that they are within our reach.

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Aussielyn's picture
Replies 11
Last reply 2/3/2015 - 11:31pm

Just want to share my good news!

I hope to lift the spirits of some fellow melanoma warriors by informing you that my 3 month scan results after being on GSK Braf/Mek combo showed all tumours have gone & there are no  new sites of disease! I had my dabrafenib dosage reduced to 200 mg a day after unpleasant side-effects around the 6- 8 week mark.

I am feeling really well at the moment & doing all the things I used to do before beginning treatment. The only side- effect at the moment is mild joint pain in ankles & tightness in calf muscles during exercise- all very bearable! Hopefully this will give encouragement to anyone else starting this treatment- My oncology pharmacist informs me that they hope having melanoma will become like having a chronic disease where it is managed in the same way as ,for example , diabetes is. There are so many new treatments on the horizon so hang in there everyone!

best wishes to all


Heal with every inhalation and let go of cancer with every exhalation.

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Linny's picture
Replies 2
Last reply 2/3/2015 - 10:46pm
Replies by: Anonymous, DZnDef
Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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Bubbles's picture
Replies 18
Last reply 2/3/2015 - 1:19pm
Replies by: Anonymous, Bubbles, rick1981, porrige, _Paul_, Jubes, casagrayson

To be precise:

I was diagnosed with melanoma in 2003.  I progressed to Stage IV with brain and lung mets in 2010.  I was lucky enough to participate in a Nivo trial in 2010.  I remain NED.  I am for anything...and I mean ANYTHING!!!!!!... that will help patients with melanoma.  I think most of you know that...and me...very well.  However, I am equally passionate about those who would use melanoma...and the fear that such a diagnosis make money, reputation, whatever craziness they have in their own the expense of patients and families that are suffering.  When Ms. Patten first promoted her grand melanoma treatment...I thought: What???  This is weird.  I've been living in melanoma world a long time and this trial/treatment has no rep what-so-ever with Ribas, Sosman, Flaherty, Weber, Wolchok, Sznol, Pavlick, etc.  BUT....let me check....

Here is what my husband found after many hours of research.  We both present it here:

Dear Tim and the rest of you depending on this board…

 I am writing to alert you to a possible scam unfolding on the MRF site. Twice last week, and twice today, a  poster using the name “Jane Patten” and “anonymous” proffered a clinical trial for melanoma using autologous vaccine with dendritic cells prepared via a technique patented by a Dr. Wagner who runs a clinic in the Cayman Islands. The medical director of the Perseus Clinic is Dr. George Peoples who is also the CEO of Cancer Insight, LLC. Cancer Insight is sponsoring the clinical trials in the US.  However, some of the Phase 1 and Phase 2 data used for their application was derived from patients in the Cayman Islands. Perseus pays patients $10,000.00 to participate in these trials. The data available for the Phase 1 trial from the Perseus website is garbled and looks as though the response rate is significantly less than that achieved by other available options like Yervoy, anti-pd1 and even IL2. There are only 23 evaluable patients in the cohort. Of these, 4 were NED at the start of the trial. However, since all 4 NED patients survived for the length of the study, when they are averaged in with the other patients, they skew the survival figures.  According to Perseus data, with patients presenting initially as Stage II-IV, the progression free survival was only 12.4% at 30 months. This is no better than what is historically reported for Stage IV melanoma patients generally.  The published data in the paper:  Dendritoma Vaccine for Cancer: A Hopeful Approach.  Wei, Li, Wagner.  Current Cancer Therapy Reviews. 2009.  [Check it!!!  2009, people!!!!!!!!]  touted by the Perseus web site, using their specific vaccine preparation in conjunction with IL2 in their clinical trial, demonstrates a much worse response than other trials with dendritic autologous vaccines to date. The Phase I trial of Stage IV melanoma patients had only 1 complete response and 2 stable disease events out of 10 patients. Length of response is not stated. The Phase II study had a progression free survival of 5.5 months which is less than what is expected for Stage IV melanoma patients with NO TREATMENT!!!!! The progression free survival at 5 years was 2 patients out of 15 (or 13%). The Perseus web site also presents an “infographic” which states that there is “increased life expectancy across the board”. This is illustrated by a “90%  6.5 month survival after treatment, 33% after 5 years and 10% after 12 years”. Nowhere does it indicate the Stage of the patient, other treatments utilized, etc. ALL of the “data” is based on 25 patients with melanoma. No other reputable melanoma oncologist or researcher presents such a vague and misleading face to their care/data. This trial, its proponents, and results are not credible. These posts are an obvious sales pitch. Sadly, this represents a deplorable scam.  Brent Morris, M.D.

Obviously, each of you will have to choose what is best for you and yours.  We have both dedicated a large part of our personal time and effort, with no agenda other than the best possible care and treatment, to melanoma patients (near and far) for many years.  Do what you think is best for you.  But, with the predatory nature of Ms. Patten's posts....we thought it best that you see the data for yourselves.

Wishing you all our best - Celeste and Brent Morris

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

Hi, all --

I posted this a couple days ago but think it got lost in the shuffle, and I'm completely overwhelmed with all the issues over the past few days. Dad was hospitalized after his PET/CT with pneumonia which caused rigors and delirium. He was discharged last night and is back home, but he's still a little confused and having cognitive issues (which were not there previously.) This they are blaming on the infection, as the elderly often exhibit confusion with systemic infections. On top of that, they lost Dad's upper denture while at the hospital, so I'm trying to find a dentist to get that done ASAP, though it seems it will be out-of-pocket. They also want him to do physical therapy, as he came out of the hospital rather shaky and unsteady.

I am also supposed to make a decision about what to do with his melanoma treatment. His PET/CT showed some shrinkage of his smallest tumors after four doses of Keytruda, but the largest ones have grown, most by just a couple mm but some quite a bit more.

For example, his report says, "Representative left lower lobe pulmonary nodule previously measuring 1.9 cm, now measures 2.6 cm ... Representative right middle lobe pulmonary nodule previously measuring 1.7 cm, now measures 2.3 cm ... Representative right upper lobe pulmonary nodule previously measuring 2.9 cm, now measures 3.6 cm"

The new tumor (since starting Keytruda) seems to be growing quickly: "Interval increase in size of hypoattenuating segment 8/4A liver lesion previously measuring 1.8 x 1.5 cm, now measuring up to 3.9 x 3.8 cm with interval increase in FDG avidityInterval from SUV Max of 4.0 to SUV Max of 7.5."

His doctor at UCSF, Adil Daud, feels that it's time to try something else. I asked him about the reports of late responders, and he said that while that can happen, his experience after leading trials of the drug for the past couple years is that people who are going to respond usually do by this point. He has suggested the following options:

1. Switch to Nivo, still a PD-1 but a different chemical, which could trigger a different response;

2. Try Temodar, a chemotherapy pill with very mild side effects but a response rate of only 10-12%;

3. Try two more infusions of Keytruda but at 2-week intervals.

I haven't heard before of people switching from one PD-1 to another, nor do I know anything about Temodar. If anyone has any insight, I would really, really appreciate it. I'm getting to the end of my rope here and really am not able to think clearly enough (or have the time to investigate enough) to feel like I can make a good decision.

Thanks very much!


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vince1962's picture
Replies 1
Last reply 2/3/2015 - 9:49am
Replies by: kpcollins31

Well got my scan results and well I knew about the lymph nodes under my right arm cause they are the size of a golf ball but it shows activity in the left pectoral area and also in the right side of my back, left axillary and left subpectoral nodes are also suspicious! 9mm cutaneous nodule mid right back worrisome for malignancy, could represent primary lesion. So my question is I need some input!! what do you guys think?

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Gene_S's picture
Replies 1
Last reply 2/3/2015 - 6:25am
Replies by: Bubbles
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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