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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MonicaD's picture
Replies 51
Last reply 9/5/2015 - 8:57pm

Hi.  My name is Monica.  I'm 33 and was diagnosed on July 13th of this year with malignant melanoma from a mole that was removed from my lower leg.  Last week I had a sentinel node biopsy and am now awaiting results from that to see where we go from here.  The waiting since the initial diagnosis to now has been unbearable and I have another 3-4 weeks to wait for results.  I just need a game plan.  So far I have found this disease much more scary and tiring from a psychological perspective than a physical one.  I feel fine.  My blood work came back fine.  My lung x-ray came back clear.  I read a copy of my histology report and comparing it to what I've read online, I think at best I'll be Stage IIb since my mole was ulcerated but I have to wait for my node biopsy results to know if it's even a worse stage than that.  What I've found hard in my online searches is that there's really not much out there as testimonials of people who have gone through this journey with melanoma and survived.  I find myself yearning to hear people's stories but I'm having a hard time finding any which I find scary.  So, my question is, have you gone through this and how are you now?  I just want to hear that this can be beaten, even if only beaten a little at a time each time it's beaten.  I know if I survive that this disease is about being diligent and watching your moles, etc., and I know recurrences can and likely will happen, but still... can I beat it?  Have you beaten it?  I just want to hear something positive.  Nobody will tell me anything positive and I'm finding that that is just feeding into the fear that already exists inside of me.  I'm trying to stay positive and mostly I think I'm doing a good job of it but I admit I need help with it sometimes.  I don't need someone to tell me it's all going to be ok because I know there's a chance it won't be but I just want some positive stories I can store in my mind so that when I do feel scared I will have a tool to beat down the negative thoughts and keep hope alive within me.  Thanks. 

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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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Skywalker's picture
Replies 4
Last reply 9/5/2015 - 1:39pm
Replies by: michaelinsocal, kylez, MattF

I was diagnosed with MIS on the center of my nose and after my initial shock thought this would be straightforward: excision with some reconstruction. 

It turns out that an melanoma excision on the nose is challenging: Excision requires experience with the proper technique that not every dermatologist has and many plastic surgeons don't want to do any melanoma related reconstruction. 

I've figured out by now from multiple consults that I would need someone who's specialized in using Mohs for Melanoma, which is rare. Moh's surgery is used typically for other skin cancers, not melanoma. The type of Moh's is controversial too, with or without histochemical stain, etc. 

I need recommendations for a Moh's trained surgeon who is highly experienced in applying the technique for Melanoma; plus a plastic surgeon, plus a good oncologist - I actually have by now 3 primary cancers: breast, SCC, and melanoma and am told that that is not a good thing. Any recommendations are much appreciated. 



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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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Anonymous's picture
Replies 10
Last reply 9/4/2015 - 9:26am
Replies by: Anonymous, amelanomajourney, DZnDef, Richard_K, stars, Want2help, ldub

Recently diagnosed as stage 2a.  Dermatologist recommended I use a sunscreen every day on hands and face.  Anyone have a recommendation for something tolerable - light and easy to use, not heavy, tacky or greasy?  Thanks!

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hope4ned's picture
Replies 6
Last reply 9/3/2015 - 8:52pm

Am confused about melanoma surgical oncologist's recommenation about whether or not to do SNB on LO (over 70).  Tumor is at least 6mm, report says "ulcertaion not seen" but doctor thought it looked ulcerated (of course, this was after the shave biopsy), and mitotic rate is 6.  No evidence of disease in external examination of lymph nodes at all. 

Specialist agrees that tumor should be removed.  Less convinced SNB is the way to go because it provides no clinical benefit except having the patient "know" whether disease has traveled microscopically to the lymph nodes.  Would not provide info if in blood stream. 

Asking LO to do PET scan.  Says if PET scan comes back positive for spread then would not do SNB (would dissect infected nodes instead).  If PET scan comes back clean, proposes no SNB and watch and wait given LO's age.  Says would provide different advice if patient was in 40s.  Says would be very against SNB if patient in 90's but if it were him he would not have it at LO's age.  However, would do it if LO wanted.  LO heavily  leaning against based on rec and because generally surgery adverse (concerned re infection and unforseen complications).  Also has basil cell issue behind ear but doctor says that is less urgent .Says LO would qualify for interferon without snb based on tumor thickness but says wouldn't recommend interferon given LO's age.

This is the first time I have heard of such a recommendation at this tumor thickness and doctor is from respected melanoma practice.  Am confused and concerned about recommendation.  Does it seem reasonable?    

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Aundrea's picture
Replies 9
Last reply 9/3/2015 - 4:58pm

For those who have took Yervoy.  I have a few questions and I know eveyone is different.  My husband is 34 yrs old.  He have taken 3 rounds of Yervoy so far and had brain radioation twice.  He gets his last round of yervoy this coming tuesday.  Until this past sunday, he has not had any major symptoms, he has still been able to work 20-50 hours a week depending on how fatigue he is.  Sunday he started having right side abdominal pains, they come and go.  No diarhea, no fever etc.  Just real tired and abdominal pains.  This morning he felt like he was going to pass out when he first woke up and went to the restroom.  He is drinking plenty of fluids and eating so-so.  He is on megase or marinol for appitite, he has both.  I read about the colitis and liver side effects and it makes me wonder if its something like that causing the pains.  He has been a bit gassy too.  I called his melanoma oncologist and he felt it was just normal side effects and he would be ok and he will see us next tuesday.  If he does have inflammation of organs, it will pick it up on the blood work right?  Did yall experience abdominal pains on yervoy and were able to complete all 4 doses?

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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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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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AshleyS's picture
Replies 8
Last reply 9/2/2015 - 2:22pm

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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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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BrianP's picture
Replies 11
Last reply 9/1/2015 - 8:27pm

So this discussion hasn't come up in a while.  Do side effects have any correlation with overall survival?  This abstract says it doesn't.  Also states that taking corticosteriods don't have an impact on overall survival.  Would be interesting to see the whole article.

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JoshF's picture
Replies 22
Last reply 9/1/2015 - 6:56pm

I know many here would say MRI is crucial for brain surveillance but my onc says without symptoms that a CT and/or CT/PET would suffice. I question whether I should just ask for it or find another onc who would be more agressive with scans.

Do symptoms usually present themselves? What are common symptoms?

What is likelihood of Stage 4 getting brain mets?

Are treatments effective for brain mets? Radiation? Does ipi, keytruda and others pass the blood-brain barrier?

I'm giving myself a lot of stress just thinking about this lately. I feel fine but we all know what stress does to us...I'm just in an anxiety phase lately and just trying to work my through. Posting here and getting feedback usually helps. well!!!


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

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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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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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