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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Tjvcc's picture
Replies 3
Last reply 12/10/2017 - 12:14pm
Replies by: jymarks2011, Becky, Bubbles

30 / Male Boston MA
I posted 5 weeks back when I had my Spitzoid taken out. The doctor thought it was nothing, the path reports came back conflicting Atypical Spitzoid Unknown Biological / Spitzoid Melanoma.
Unfortunately it 5 weeks later, I have one of my 4 nodes in my groin  positive. The path says Sentinel lymph Node #1 Metastatic Melanoma is observed with levels and positive for strains 2 100 mart 1 MITT, -- HMB45 is Negative Tumor is present as scattered cells (they indicated there was not a lot.
Just looking for experience. I have heard the prognosis for Spitzoid melanoma is a little batter than traditional. I also have a pathologist who seems to think this could still be benign because the HMB45 was negative, I am sending to his lab to review.
Any comments would be great. treatments or stories?

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Anonymous's picture
Replies 6
Last reply 12/8/2017 - 4:56pm
Replies by: Bubbles, k311335, Anonymous

Hi, all

My mother is ill. It all began with a heel. Depth more than 4mm. The operation was removed in June 2017. Histology showed melanoma. At the moment, the heel heals well. At the moment, there was a positron emission and computed tomography survey. The examination showed points up to 8mm in the lungs up to 10 pieces. There was a re-examination of the same results where they indicated that there were more of them.
The attending physician prescribes 4th degree and chemotherapy therapy.
At the moment, Mom feels like a good blood test is good.
Mom does not want to do chemotherapy therapy. Since the survey data is different and there is no single picture. Doctors do not want to deal with the patient.
An additional examination of the radiologist showed nothing.
Ultrasound of the lyophotic system of the inguinal region revealed nothing.
The question is, can doctors make mistakes?
Are there any specialists who can see the results?

Best Regards

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My husband, 64, had a pink bump on his leg that he has had for many years, which derm said skin tag.  It began to grow so I made him an appt to have it removed.  They sent it to path lab and the report was very confusing.  The lesion passed the FISH test as no melanoma but because of strange archtiture of the sample they indicated it should be treated as “atypical BAP-1 Deficient Spitzoid Melanocytic tumor of uncertain malignant potential.   It was listed as type nodular and BAP-1 deficiency at least 5.0 thickness and IV invasion level.  We had the excision done today as well as a SNB and am going crazy reading what this might be on the internet.  I have a call into the surgeon to ask if he can split samples and send to 2 different labs for review.  Has anyone heard/seen anything like this?  Our dermatologist indicated this was rare to have several pathologist review and come up with conflicting recommendations.  Help, I am going crazy. Thank you

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BjHagins's picture
Replies 4
Last reply 12/8/2017 - 11:33pm

On May 5th of this year I had a scalp melanoma removed along with 5 lymph nodes.  All lymph nodes came back clear.  I go back on Jan. 3rd for a lymph node check.  Last week I noticed I have a large lump about 4 fingers wide slightly below where a lymph node was removed on my neck, location is more back shoulder but towards the neck if that makes sense?  Not sure if this could possibly be a lymph node?  My  sister had Lymphoma and I distinctly remember her nodes feeling like marbles under the skin.  I would just call and have it checked but my husband started a new job 2 months ago so we are waiting for the new insurance to kick in, thanks in advance!

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Jenine's picture
Replies 3
Last reply 12/11/2017 - 12:27pm
Replies by: beans920, BrianP, mrsaxde

Hello dear friends,

I hope this post finds you and your love ones doing well.  

My husband has been participating in a 2 year clinical trial known as MK3475 - Keytrudaand Peg interferon.   He has two tumors near the original site, one in his sternum and the other in a lymph node on his neck. Over the past 12 months he has not developed any additional tumors and the tumor in his sternum has shrunk by 13%.   I’m feeling like my husband’s response should have been better after 18 treatments of Keytryda.  

I can’t help think there might be something else worth considering as a course of treatment. Don’t want to rock the boat with Dr. Kirwood but feel a Meeting should be arrangec to discuss progress.   Hard to sit back and wait when the response isn’t that significant. One thing I’ve learned with this disease is you must stay ahead of it and control tumor growth. 

Any advice or guidance would be appreciated. 

God bless!

Jenine, Pittsburgh PA

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Well, I went to Johns Hopkins this morning to find out what was in store now, after getting my scan results showing increasing cancer in my lymph nodes. I was unsure about continuing in this trial if they wanted me to, since it was becoming obvious to me that I am getting little if any benefit from it. When I met with Dr. Sharfman it turns out my decision was made for me. Apparently he appealed to Bristol Myers Squibb to treat me for one more cycle of 4 infusions, but since I had shown progression two scans in a row, they said no.

He told me that he wasn't crazy about radiation followed by Keytruda, like my local oncologist had mentioned in the spring before I started this trial. He said that we could do oral chemo -- I forget the name of the drug -- which he said he has gotten good responses to from some other patients. But he said he thought my best option, and best chance at regression, was to participate in the TIL trial at the National Cancer Institute.

So we agreed to proceed with that, and he said he would set the wheels in motion. And that's where things stand with me at the moment. I'll admit to being a little frightened of this -- it sounds like I'm going to be in for a month or so of extreme unpleasantness. But I've read about this treatment and I'm hopeful that it will be the one that finally works for me.

As usual, I'll keep you all filled in.


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TexMelanomex's picture
Replies 5
Last reply 12/10/2017 - 12:16am
Replies by: TexMelanomex, Ed Williams, Anonymous, stacijane, iskitwo

Hey Warriors!!

I hope you are all staying in the fight and living life as well as you possibly can!

I wanted to give y'all a quick update on the PV-10 progression so far. I received my most recent (the 3rd) treatment on the 21st of November (another 15mls of PV-10 and another round of Pembro). 2 days ago (so 9 days after the last intralesional injection) the tumor site began to ulcerate in two spots. At first, it was just a few drops of PV-10 (and maybe some blood), but when I woke up this morning it was game on! Completely saturated the 5x9" gauze bandage and I've had to change it twice today (soaked through and into my work this afternoon...can you imagine the task of getting a known clothing dye out of a light colored shirt!!).

Now my cursory understanding, of the very preliminary data, regarding PV-10 is that this is a good thing. Finally an application for ulceration in Melanoma that isn't bad! The treatment team says this will likely continue until everything has drained at which point either the necrotic tumor will try to expel itself or they will need to remove it (yes, gross, I know but the only good tumor is a dead tumor!) I suspect I have a little way to go since I've had 3 rounds of injections (15mls each) so that's 45mls of this pretty purple tumor punisher that has been injected. I assume I've absorbed and "processed" several mls thus far, but it still leaves a lot to go. At the risk of nauseating everyone, I'll post an update in a few more days to let you know how this is unfolding. 

One interesting thing about this, I don't need a scan to tell me something is going on or not...something is definitely going on. Whether this is a good, great, or just a messy thing...time will tell. I have to say, I remain optimistic that this is a decisive battle being won, even if only in one location on the battlefield. 

I keep all of you Warriors in my prayers, that you stay strong, stay calm, and as we would often say in the Army..."Charley Mike" (translated =  Continue Mission!)

Until the next installment. 


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Lil0909's picture
Replies 2
Last reply 12/5/2017 - 8:00pm
Replies by: Lil0909, geriakt

Hi All!  It's been a while.  This board was so helpful to me in the past, but I haven't visited in a while.  Kind of a long story.... but my immediate question is, does anyone know about trying to conceive and having a pet scan?  I'm having some "issues" and need to get a pet scan, but I'm also trying to conceive, rather unsuccessfully so far.  I'm wondering if I have the pet scan prior to expected ovulation (sorry to the men on this board :) ), can I still try to conceive this month?  Or rule out the whole month?  

I feel like I need to do a separate post, b/c i'm not doing so hot lately, but here goes.  I'm 4 years since diagnosis, Stage 3a, melanoma in right arm, complete lymph node dissection.  I was diagnosed at 29 (female, if you haven't already guessed that).  I did a year of interferon, and had all the horrible side effects.  I still struggle with certain side effects (fatigue, thyroid) and really expect to forever ugh. 

Most recently - in early august - I was at the gym and was holding a heavy weight and it felt like someone stabbed me in my arm pit.  It hurt non stop for 24 hours.  Since then, i still get the knife stab feeling when I move wrong on exercise.   I've tried everything I can think of this work on this.  Rest, ice, graston, stem, massage, etc. We thought torn scar tissue, and I was thinking maybe scar tissue rehealed around a nerve or a surgical clip moved or something.  I had an MRI, which showed some other shoulder issues, but nothing really on this issue. Any ideas?  

ugh - I just need to vent to someone who understands. I HATE Melanoma!!! I know so many on this board are going through so much worse than I am. I hate melanoma for all of us.  Even when I'm NED, it just seems to constantly haunt me! I just want to be able to be able to as social as I want without fatigue causing me to skip out of events, work out when and how much I want to, not have brain fog, have a baby, not have constant anxiety, is that too much to ask? Santa??? I just want to be able to live a normal life.

I want all of us not to have to worry that every little anomaly in our bodies makes us immediately jump to worst case scenario.  I want all of us to be able to whatever we want, that others take for granted. That's my Christmas wish for everyone here. Happy Holidays to everyone!! 

PS - I think i'll be upping my anti anxiety meds tonight :) 


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Anonymous's picture
Replies 4
Last reply 12/10/2017 - 6:57pm

Dear all,

Hope everyone is fine,

I have several questions because I am a bit lost regarding Sun protection. 

Indeed, after having an atypical Spitz tumor, Dermatologists told me that I have to protect my skin, because I have an increased risk of skin cancer.

However, every Dermatologist does not same the same thing to me. 

Therefore, I would like your advice that I can keep on a daily basis.

I have a very good phone application which gives me the uv index on a daily basis.

But, if I understand, the protection is not the same depending on where you are living. If you live in London, during 6 months, the uv index is very low, most of the time below three, so sunscreen is not necessary, but if you live in Australia, you should use sunscreen everyday right?

When the UV index is at 3 or above, I put sunscreen (High SPF) on the parts which are not covered by my clothes.

I try to go the beach when the UV index is below 3, and I put some sunscreen, even if one of my dermatologists told me that I am safe.

. On the internet, it says that we have to avoid the sun during midday, but I work in the hospitality industry, I am a manager, and I have to oversee many outlets, and one is the pool area. So, during summer, I have my shirt, black pant, and I put some sunscreen on my face.

However, I am a bit lost, I do not want to be paranoid, but I avoid the sun because I am bit scared. But I know that many people with melanoma enjoy vacations in Hawai, Miami and so on, but they are sun smart. 

Can you explain to me?because even on the internet it is not clear.


Thank you very much,


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Anonymous's picture
Replies 1
Last reply 12/4/2017 - 6:36pm
Replies by: MovingOn

First time post, so please forgive if protocol is improper.

My husband was diagnosed Stage IV Metastatic Melanoma, HLA Neg, BRAF + and put on Ipi/Nivo combo in August 2017. After the 2nd infusion, he began to get side effects of severe muscle pain, joint pain. After 3d infusion, this progressed even stronger and led to Adrenal Crash. IM Prednisone followed along with Levothyroxine and then hydrocortisone. 

Has anyone experienced adrenal crash with this treatment? Can you offer any sage words regarding your experience? Have you recovered your adrenal system or are you on replacement therapy (Prednisone, Hydrocortisone and/or thyroid replacement)?

I realize the combo drug is like a bull out of the gate and the steroids work to put the brakes on the drugs but is there anything else you are doing to improve your situation that you might share?


Thank you~

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Hi! I'm a 19 y/o Asian (Filipino) male. Last week, I noticed a black dot under my big toenail. But I was only able to search about it today. I was initially shocked about the search results. Anyway, I just wanna ask your opinion regarding my case if it looks like a subungual melanoma or just a hematoma under my toenail.

Just to give you a background, I don't recall any injuries to my foot/toenails although it is worth noting that one of the shoes that I'm currently using is quite small for my foot and I do remember my toenail aching a few weeks back.

I'll be attaching some pictures. Thanks.

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CancerSpouse's picture
Replies 7
Last reply 12/6/2017 - 8:52pm

Hey Warriors!

My husband, John, is in a UCLA clinical trial involving SD-101/Dynavax injections in combination with Keytruda infusions. The SD-101 always triggers a headache. And especially following double treatments, his headache is sustained for several days and quite severe in the first 48 hours. He also has fever and chills, as is typical.

He has alternated Tylenol and Advil for headaches and used Oxycodone during the most painful period. None seem to help enough. I would appreciate any suggestions that have worked for you or your loved ones with regard to treating the severe headaches.

BTW, the tumor on his deltoid that is being injected with SD-101 has shrunk dramatically. But we won't know about how the combo is affecting his other tumor on an adrenal gland until after his 90-day scans in December. Here's hoping ...

Keep up the fight!



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Dhva's picture
Replies 5
Last reply 12/2/2017 - 5:48pm
Replies by: kst, Dhva, Bubbles, jennunicorn

Originally told Nivo treatment would be every 2 weeks for a year and then be re-evaluated. After the 4th treatment the dr phoned in an rx for propranolol, with no information or discussion.  Now it looks like it is being stopped after 12 weeks with no explanation. Is this a normal length of dosage time? Could it be related to the rx decision? Thanks

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PinkPenguin76's picture
Replies 2
Last reply 12/4/2017 - 9:50am
Replies by: Anonymous, PinkPenguin76

I am starting to get nervous... Doctor looked at a growing/spreading mole on my shoulder and didn't refer me to specialist (derm)... Instead he immediately set up appt for punch biopsy via another doctor at my primary care facility who also is not a derm. Is this a bad sign that he already suspects melanoma? I've not been well lately and even have a 7.4'm cyst on my spleen. My lymph nodes throughout my body are large, hard, fixed and tender... Antibiotics did not help, nodes still getting bigger... Fatigue, night sweats, hard to breathe and even large node found in breast... And now dizziness plus weird troubles with thought process/balance... Just looking for support... Anyone else been immediately sent for biopsy and not referred to a dermatologist?

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kelweb's picture
Replies 3
Last reply 12/7/2017 - 9:31pm
Replies by: BrianP, MichelleRHG



Has anyone delt with mets to the small bowel and had surgery?

My husband is 36, and has mets to the small bowel. The mets are causing thickening of the intestine and causing a blockage. He also has mets (lymph nodes) to his mesentary. He was hospitalized over the week, and the plan is surgery to hopefully remove the portion of bowel causing the issues. We still havent met with a surgeon yet to see what the exact plan is though. In the mean time, the poor guy is on a liquid diet to keep from getting a bowel obstruction. :(

My question is, if you had surgery, who did it? Anyone you would reccomend? We are looking for the best. We want someone to be as aggressive as possible and remove as much disease as possible. My husband is stage Iv, but determined to beat this! We have an appointment with a surgeon at the U of Washington on the 11th, but we want to have a back up in case we need a second opinion.

He has been at this for four years, and has been through interferon, yervoy, nivolumab, a clinical trial that included nivo and an oral med, and he is now on tafinlar and mekinist. Hoping for a long response on the taf/mek because he feels so good on it! After taf/mek, we will hopefully find a clinical trial.

Hoping everyone is feeling well, and keeping up the good fight!!

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