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 13
Last reply 9/6/2015 - 11:38am
Replies by: jpg, Bubbles, kylez, ET-SF, Ed Williams, Anonymous
mrsriddle's picture
Replies 8
Last reply 9/2/2015 - 2:51pm

My husband has Braf stage IV metastatic melanoma. It is in his duodenum, and spots along his small intestine and pelvic area.  He has been on the Tafinlar/Mekinist Combo for three months now.  After a CT scan yesterday he has some spots that are not there and others shrinking. The wonderful insurance company wont let us have another PET scan yet and I know they are more accurate and show more.  Very frustrating. I know this is not a fix but  a way to stave off growing and spreading.  I have to say I am optimistic.  He is feeling wonderful overall with a side of fatigue.  We have had a couple of set backs. A couple of weeks ago he had pneumonia in both lungs.  Yesterday we found out he has small blood clots in both lungs.  Anyone else have any experiences to share?  I am wondering what our next steps are.  His Dr. said this treatment is working, but for how long we don't know.

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Scooby123's picture
Replies 2
Last reply 9/1/2015 - 6:10pm

Hi, have been looking at ways of getting rid of tumours in liver, lungs. I know mel pops up everywhere. Has anyone had this kind of treatment or knows much if it is suitable for us guys coping with mel.when I have read about it, it does state tumours that have spread to other parts of organs. Not sure if due to still having cancer in lymph nodes would still be able to have it done. Just a thought on other ways of treating this horrible disease. 

I know if you guys are stable it's usually watch wait see what happens. With scans but surly you would want to keep trying to get rid of it all.

might be talking a load of rubbish but am just looking at any way possible in treating this disease. I live in Uk and we do not have combo treatments here. I am not braf ippi was my first treatment 50% reduction in tumours having another scan this Friday 4 weeks prior to my first scan after ippi due to my consultant had applied for keytruda for me but was not hoping we get it but he has. Due to my response to ippi he is scanning me early for changers due to cannot hold the treatment for me which I think it's stupid due to do not have much choices. Do not want to go on a chemo trial


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SunshineMomof5's picture
Replies 12
Last reply 9/4/2015 - 11:21am

Hi, everyone!  I'm new here.  My husband has Stage 3C metastatic melanoma and just finished his 4 week course of 5 days a week IV interferon treatments.  Now we're on the 3 a week injections.

He's down to 126 pounds.  He's 6'1".  The nausea has been bad, but so has the metallic taste in his mouth which makes everything he eats taste horrible and creates more nausea.

Any tips or tricks from those who have travelled this road before us?

Thanks in advance!

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kahayesli's picture
Replies 6
Last reply 9/15/2015 - 8:57am

I was diagnosed with an insite oral melanoma that was removed in March, 2015 and recently had another tumor removed from my soft palate on Aug 20.    Going for a follow up tomorrow and I'm worried about results.


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Replies by: Rosegargala, ET-SF, Gene_S

I was contacted yesterday to confirm my node involvment . They said it was so tiny in my setinal node that it could only be seen under a microscope and then it was still a really small amount . My question is , do all stage 3a superficial spreading melanomas move to other parts of the body?  Mine grew from under a mole that was already there! So now I worry that it may of had nodule melanoma in it too but have never been told that.  Thanks for your replies in advance !


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hope4ned's picture
Replies 7
Last reply 9/8/2015 - 7:11pm
Replies by: Anonymous, hope4ned, Lil0909, Joe.Pro, jpg, Gene_S

Have initial consultation with surgical oncologist at Mass General coming up after referral from general dermatogist where LO received initial diagnosis from punch biopsy of tumor thickness greater than 4mm, high miotic rate and ulceration Not seen.  Am wondering what to expect for initial consultation.  Have not met with any medial oncologists yet.

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AJHP's picture
Replies 5
Last reply 9/1/2015 - 2:31pm
Replies by: ET-SF, stars, Millykamp, AJHP

Hello! I am 25 years old and was recently diagnosed with stage 1A melanoma, .56mm on my back. This is my 2nd post on here. My first post received so much helpful feedback from all of you amazing people so when a question came up today I knew to post it on here. My surgeon highly recommended I do not get the SNLB in my case, since the staging is low making it a <5% chance the cancer has spread to any lymph nodes and the fact that the SNLB can be a fairly aggressive surgery for someone who most likely doesn't need it. With that being said, he is doing the excision surgery on me in a few weeks to take care of it (hopefully for good!). My question for you guys is: About how long will it take my excision spot to heal? The surgeon said the wound will end up being 3-4 inches long. I'm not exactly sure how deep, all I know is my tumor is .56 mm. I need to know if I will be healed enough for a completely unrelated surgery I have scheduled for early November. My surgeon said it should be, but it would also help to hear from any of you who have had experience with excision wounds and how long it took yours to heal. Thanks in advance for your help!

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arthurjedi007's picture
Replies 19
Last reply 9/17/2015 - 12:39am

I see Dr Adi Diab this Friday at md anderson. From what I read he seems like he should be an ok doc and has lots of experience at Msk.

I was wondering if anyone knows what to expect there? I assume they'll have several systemic treatments in mind. I know they have the pd1 combo I almost started in Nashville and til of course plus who knows what else.

Im also wondering what if anything they do for specific tumors that are at the crossroads of becoming somewhat critical? For example I found out last week I have a baseball size tumor in each kidney but the blood work shows my kidneys are ok for now. That's really the main reason I switched to go here instead of Nashville. I know others are worse off and it may be selfish but I would like to keep my kidneys while there is the chance to do so. Surgery, internal radiation, embolism, ablation, external radiation are some of the things I'm aware that could be done. Here in saint Louis they don't want to do anything because the kidneys are functioning fine for now.

Also there's always the ever present need to keep an eye on my spine to make sure there's no narrowing of the spinal canal again. Also the keeping an eye on the 3cm ish tumor pressing on my brain.

So I dunno. We'll be staying at their hotel although they are doing renovations. I'm also getting mentally prepared to just rent a place there to stay long term. I also chose mda over Msk because the winter should be more mild than ny assuming I'm still plugging along then. I hope so. I have a new Star Wars movie to watch in December. But thoughts of Jerry Ellis sure bring it home that this disease can get even the smartest and toughest.


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SarahA's picture
Replies 6
Last reply 9/3/2015 - 11:03am

Smoking pot to treat cancer treatmenet side-effects is as old as 28 years ago when I smoked it w/my mom when she had ovarian cancer. But now there is all this talk about cannabus in different forms to FIGHT cancer - to fight the tumors. Hemp oil, CBD or THC, brownies, Charlotte's Web, balm, capsules, cannabinoids--HELP!!! I went on Amazon and some prices ranged from $65 to $650. Where do I start, what do I buy...

Can you please share your successes and failures with me?

 My son has been in the hospital (ER Sat. night - lost strength in right leg,(again) but this time he couldn't walk, and then pretty fast cognitive decline right after, so they had to increase amount of steroids. Each time he has had the brain mets swelling and thhese sroke-like side-effects and then goes on the steroids he gets better, but each time a little less better. He's far from normal now, so I;m wondering how much steroids can you take and for how long until they just don't work anymore and will it be before the tumors respond to the Ketruda infusions - if and when they do?

Thank you all in advance, now I gotta go to bed.Batteries dying and Dr making rounds in 3=4 hours, I'll check in tomorrow.

Sending best wishes to allof you,


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AshleyS's picture
Replies 9
Last reply 10/29/2015 - 1:48am

Hey folks,

Has anyone on Opdivo/Keytruda found any links between diet how you're feeling? I'm having one of my "bad days" today - lots of cramping and diarrhea. I've been trying to make a connection between my diet and these "bad days" but I haven't found a link. I also don't see anything that I'm doing differently on the good/great days. I haven't cut out any foods and eat a variety of fruits, vegetables, meats, and grains. I don't drink alcohol and occasionally eat sweets. I go for walks daily, work out with a trainer twice a week, and constantly play with/chase my two little ones. I get a fair amount of rest, but have a baby who wakes frequently at night. I know that treatment may not alway be easy, but if others have found ways to make it easier, please share!

FYI, I'm not looking for a way to cure my melanoma with diet. 


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Anonymous's picture
Replies 12
Last reply 9/8/2015 - 9:37am
Replies by: ET-SF, _Paul_, Anonymous, Ed Williams, katie1

ET seems to be (haven't yet confirmed the exact appointment) lined up with the melanoma center at Inova Fairfax.  They are participating in a Phase III trial of seviprotimut-L (POL-103a) at that center, and ET would qualify for the study, being NED, surgically resected stage IIb.  ET also qualifies for a couple of other vaccine trials.  There are no other trials at this time for which she qualifies, given her stage.  We are trying to figure out which vaccine trial would be most promising for her to undergo.

Option 1:  Phase III seviprotimut-L trial at Inova (NCT01546571):  This vaccine, manufactured by Hong Kong-based Polynoma, was first developed in the mid 80's and has a very small body of research behind it throughout the years.  From what I'm reading, it seems to be somewhat successful at mopping up free melanoma cells in the circulatory system and especially reducing serum CYT-MAA (cytoplasmic melanoma-associated antigen).  Perhaps the CYT-MAA effect is from a reduction of tumor load and therefore shed antigens?  Although the vaccine doesn't work on everyone, it works on some, somewhat extending the duration of recurrence-free survival.  The problem with this Phase III study is that the experimental design uses a placebo control group.  I don't yet know whether they use unequal sample sizes for the experimental vs. control groups.  (Some studies will greatly diminish the size of the control group for ethical/compassionate reasons.)

Option 2: Phase I trial of GVAX, Lipson, Johns Hopkins (NCT01435499):  Compares GVAX of two strains, combining one strain with cyclophosphamide.  GVAX vaccine, developed 1993, manufactured by BioSante Pharmaceuticals, consists of whole tumor cells that have been genetically modified to secrete GM-CSF (granulocyte-macrophage colony stimulating factor).  These whole cells are first irradiated to prevent cell division.  If I understand correctly, the strategy is to use the GM-CSF to stimulate macrophages to engulf them, digest them, and express their component antigens.  I am finding no data so far as to any measure of efficacy, other than immunological findings.  But then again, I suppose that's why it's still in Phase I testing.  Lipson is trying to determine how well the drug is tolerated

Option 3: Phase II trial of CDX-1401 and poly-ICLC, with or without CDX-301, Hanks, Duke (NCT02129075).  I don't know whether this trial is still in progress, as I don't see it listed on the Duke website.  These vaccines are manufactured by Celldex.  CDX-1401 is a MAB specific to the DEC-205 antigen on dendritic cells, activating these cells against the NY-ESO-1 tumor antigen.  (I have no idea whether ET's tumor expresses this antigen.  Could this be tested?)  CDX-301 stimulates production of dendritic cells.  Poly-ICLC (mfgr, Oncovir) is a viral mimic that acts as an immunostimulant.

Any thoughts as to which of these three choices might hold the most promise for ET at her stage IIb?  Note: We have no insurance coverage that would help us with options 2 or 3.  I don't know what sorts of costs would not be covered by the research grant.  Only option 1 is conducted by physicians and a melanoma center covered under our insurance.

Thanks for any thoughts on these vaccine trials!  We continue to be hard at work learning all this stuff!  There's sooooo much to learn!


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PamelaA's picture
Replies 7
Last reply 9/5/2015 - 6:54pm

I am currently getting Keytruda every 3 weeks. My family knows that I have stage 3c Cancer, they know I am now taking chemo and they know I am in a lot of pain from past surgeries but they still make me feel like I should be attending everything I am invited to, regardless of how I am feeling. Today my whole family went to a birthday party for my cousin, and I stayed home. I'm upset because I feel like am missing memories and because it gets held against me but bottom line, I don't have any energy!


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Tim--MRF's picture
Replies 1
Last reply 9/1/2015 - 5:38am
Replies by: stars

We heard this morning that Oliver Sacks, famed neurologist and author of the book Awakenings, has succumbed to ocular melanoma at age 82.  Dr. Sacks had a long career as a clinician, educator, and author. Awakenings was made into an academy award nominated movie staring Robin Williams and Robert DeNiro.

Dr. Sacks has been public about his cancer, particularly in recent days after he was diagnosed with metastatic disease. He was treated for ocular melanoma in his right eye, but later developed metastases in his liver.

Melanocytes are well known in the skin but are also found in the uvea, middle layer of the eye. Many people have a "freckle" in their eye that is benign. Sometimes, just as in the skin, those spots become malignant and form melanoma. The genetics of uveal/ocular melanoma are different from melanomas that start on the skin. About half of people diagnosed with uveal melanoma will develop metastases and this almost always happens in the liver. 

I truly believe the old reminder from John Donne that "Any man's death diminishes me..." but somehow when a well-known person dies from melanoma the impact of this cancer becomes particularly real and present.

Let's use his passing, and the news coverage that will accompany it, as an impetus to reach out to our friends and loved ones still struggling with melanoma. An extra phone call, email, or hug is always a good thing.



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davekarrie's picture
Replies 1
Last reply 8/30/2015 - 12:15pm
Replies by: arthurjedi007

Hello all,

I have mets to lungs, abdomen, liver and small bowel and C7 neck vertebrae. Just started Keytruda/Indoximod trial at Mayo in MN.  Will have infusions every 3 weeks. I feel great but just started on Thu.  Has anyone heard of Indoximod or been on this? I know its in a trial but its supposed to add to the Keytruda affect, at least it should, let's hope!  I will keep everyone updated how I do on this trial. Much love to all out there!

Live life to the fullest and enjoy each day! #noonefightsalone

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