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
Anonymous
Replies 5
Last reply 8/20/2016 - 7:34am
Replies by: debwray, Bubbles, Linny, Anonymous, JuTMSY4

Hello. I had a lymph node disection done on my right groin on Monday. They had to take both the superficial and deep nodes out. I've now developed a case of lymphadema in my scrotum. I want to get compression garments but don't know where to look. I'm in Canada. Also should I see the surgeon about the swelling? I'm not sure there is anything he can do.

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Patina's picture
Replies 6
Last reply 8/20/2016 - 8:23am

It's three month shy of 3 years, but my Mom, at 80, just got the approval to get her commercial drivers license back!  She is ecstatic!

Her doctor's all call her a miracle considering the stage and number of brain mets, which totaled 28, including a craniotomy for a recurrence. She has had no cognitive issues and is certainly A-Typical because of her outcomes thus far and her remarkable strength and resilience. - She acts like a 50 or 60 year old and has been dying to get back to driving for a local tour coach company she use to work for. - Staying home or taking it easy it too boring for her!

Hopefully one day everyone will have these results. In the meantime, this gives others in this situation some good news from a Stage IV survivor.

History:

At 77 she was diagnosed with Stage IV and then brain mets, which had been missed!?! She had gamma knife radiation for 8 of 9 brain mets, they missed one !?!, followed by Yervoy 4 days later. She had amazing results, are related to the abscopal effect from gamma knife radiation. However, still had to deal with 17 more brain mets 4 months later with gamma knife treatment again, a reoccurrence about 16 months later which needed a craniotomy and then another brain met 1 month later. She's been on Keytruda for 1 treatment shy of one year, and they can't find any signs of cancer in her brain and most of the remnants from treatment are gone. - Her last CT scan showed 2 or 3 small smudges in internal organs... Everything else is gone and other than the brain mets nothing else has ever shown up.

My Mom is being treated at USC in Los Angeles. Her team has been awesome and I doubt that anyone, but Dr. Eric Chang and his team, could have done a better job with treating her brain mets without any cognitive issues to date. - He was called in 4 months AFTER her first gamma knife treatment because we were told she had 1 new brain met.  We found out that not only had the first team MISSED a brain met, but that she didn't have just 1 new brain met, but at minimum 5 in her prefrontal alone. We had been told to watch and wait by the first team and I can't imagine what would have happened if we had done that. With certainty my Mom would be in the same position now if we had followed those instructions.  - It pays to get second and even third opinions.

 

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julia80211's picture
Replies 3
Last reply 8/22/2016 - 5:23pm
Replies by: debwray, julia80211

Hello-

I've seen some others post their biospy results so I'm hoping that someone can take a look at mine too.  

 

A little background: A friend of mine passed away from Melanoma last fall.  She asked all her friends to get skin checks, so I did.  I had one mole that had changed but nothing that seemed concerning as it had always been skin color.  Then part of it develped pigment.  Then the pigment formed a dark line in the mole, so I made an appointment.  She drilled how important the "E" is when looking at your moles.  The PCP said "It's probably nothing" but referred me.  The derm thought it was nothing but took the biopsy to put my mind at ease.  Everything came back fine in March.  

Once the biopsy area healed a tiny dark spot showed up and grew rather quickly from a tiny dot to a 3mm spot in the matter of a few weeks.  I was in for something else and the derm saw it and asked so I recounted what happened.  At that point they decided to take a punch biopsy.  

I got a call last Monday.  The derm said that the biospy came back with "severe atypia" and she said the pathologists couldn't decide if it was atypical or melanoma.  So I have a excision scheduled for Sept. 2nd.  From reading other path reports on here, I don't seem to have some of the key measurements though. :( 

I just picked up a copy of the report today to try to put my mind at ease.  The whole "maybe it is, maybe it isn't" made me nervous.  

On the tissue exam part it reads "erthematous papule x 6 hours, reactive erthema vs erthema multiforme vs bullous arthropodB- hyperpigmented 3mm macule in site of previous shave biopsy for nevus, recurrent nevus vs atypical nevus vs melanoma."  

It was reviewed by 2 pathologists.  The first one said "recurrent junctional nevus with architectural disorder and severe cytologic atypica, surgical margin free of involvement."  Sounds good, I think?   The report says thsi person is a pathologist but doesn't specify dermapathologist. Second pathologist (who is specified as a dermapathologist) says: "hyperpitmented 3mm macule in site of previous shave biopsy for nevus, recurrent nevus vs atypical nevus vs melanoma."  

Normally, I wouldn't worry but given how quickly the spot grew at the point of the shave biopsy is making me a little nervous.  Any thoughts? 

 

Thank you!

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JohnA's picture
Replies 9
Last reply 8/22/2016 - 11:31pm

Hey folks-

My wife has had a partial response to iPi-nivo combo - all previous tumors in liver, bone, lungs and brain disappeared after 3 rounds, but 3 new brain mets appeared and have grown in the past 3 weeks. 

so, our onc at a major medical school hospital is recommending we meet with a radiation oncologist to discuss srs for the remaining 3 spots.

not knowing much about this srs field, is there variation in quality from place to place that we should consider? Is there a place or two considered to be outstanding at it?

we love our oncologist and picked him in part bc of his considerable experience and clinical judgement in treating met melanoma with iPi+nivo.  but need some advice about srs.

were also seeking second opinions from Sloan Kettering, Dana farber, and Johns Hopkins.

thanks!

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Ajwells's picture
Replies 3
Last reply 8/20/2016 - 9:20pm

Sorry for the TMI, first of all. I'm not all about talking about my poop

i had my 2nd ipi treatment yesterday. I woke up in the middle of the night with some abdominal cramping. I drank some pepto and went back to bed. This morning after another couple bouts of cramping, I had a mainly normal BM, but there was some mucus in it. Now I had another moment of cramping with the feeling of urgency, but I got nothing but a tiny bit of mucus. My doc said to call if I have more than 3 loose stools in 24 hours. I was just wondering if there is anything I can do to prevent this from turning in to something serious?  I take a probiotic every morning. But I'm afraid of taking too much pepto or Imodium because I have IBS with constipation. Do I risk the constipation to avoid the diarrhea?  Or just bite the bullet and call my nurse and give her a forewarning? 

Thanks for any advise. 

27 year old mother of three. Diagnosis stage 3a with the primary on my scalp. Currently receiving Ipilimumab as adjuvant treatment. 

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Duffy's Mom's picture
Replies 4
Last reply 8/19/2016 - 10:07am

I think this forum is great. The support and care is wonderful to read and so reassuring. Many of the folks here are dealing with later stages than mine. My heart goes out to you. This is a scary diagnosis.

I have been diagnosed with stage 1b. My new mission is to learn as much as I can about going forward with as much wisdom on sun safety and living a full life as possible.

I read in one of the threads here a suggestion that "Janner has a forum for Stages 1 & 2" that would be helpful. Can anyone tell me how to find that forum?

Blessings to all involved in dealing with melanoma.

Thanks

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slh4448's picture
Replies 9
Last reply 8/18/2016 - 6:45pm

FDA Approves Opdivo and Yervoy Combination for Advanced Melanoma

 
Thu, 2015-10-01
 

Statement from Tim Turnham, Executive Director, Melanoma Research Foundation

 
The Melanoma Research Foundation (MRF) applauds the FDA’s approval of the combination of Opdivo (nivolumab) and Yervoy (ipilimumab) for patients with previously untreated BRAF wild-type advanced melanoma. Today’s approval marks a turning point in melanoma treatment. For the first time patients will have access to a regimen that utilizes two critical findings—that the patient’s own immune system can be engaged in the fight against cancer, and that the right combination of two or more drugs can have a synergistic effect.
 
Studies combining Opdivo and Yervoy, both developed by Bristol-Myers Squibb, show a much stronger response rate from people with previously untreated late-stage melanoma compared to Yervoy alone. Data from one study of the combination reported an objective response rate of 61% in previously untreated advanced melanoma patients, a number that would have been inconceivable just five years ago. 
 
Both Opdivo and Yervoy are FDA-approved to treat advanced melanoma as monotherapies, or as independent treatments. Yervoy, an immunotherapy, was approved in 2011 after almost 13 years without a new treatment for advanced melanoma. Opdivo was approved by the FDA in late 2014. Both drugs are part of a class of drugs called “checkpoint inhibitors” which disable the body’s natural mechanisms for limiting the immune system. Immunotherapies have been shown to be effective in treating people with advanced melanoma. The combination of these two treatments result in an aggressive and innovative approach to fighting growing melanoma cells. 
 
Melanoma researchers and scientists across the world agree the cure for melanoma is hiding in combination therapies. Key to this, however, is identifying the specific treatment for each individual patient that will result in a positive response. The combination of Yervoy and Opdivo brings the melanoma community one important step closer to finding the solution to this cancer

SO HAS ANYONE ASKED ABOUT THIS AND/OR HAD DISCUSSIONS WITH YOUR DOCS ABOUT THIS??? I'm stage 3a. I saw my med onc today and we agreed to start on Ipi 3mg. Then I saw this...could I be on this combo?? I sent my onc an email just alittle while ago! Anyone have any feedback on this combo?? Thanks, Stacy

 


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Anonymous's picture
Anonymous
Replies 3
Last reply 8/18/2016 - 10:02am
Replies by: Gene_S, JuTMSY4, cavsnut

I just had my yearly CT scan done yesterday, but all day today I have felt very nauseous and have had a headache. I don't remember feeling like this last time but is it possible it could be from the dye?

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jazztubs's picture
Replies 1
Last reply 8/18/2016 - 9:27pm
Replies by: sister of patient

Greetings All,

I'm looking to connect/hear from anyone who might have had a similar journey to the one I'm currently on.

It's been a wild 3 years, to say the least.  Here is the short story:

-Diagnosed over 3 years ago, with a large bleeding mole on my head

-Resected this area, with local wide excision

-Multiple lymph node disections, and the paratid gland removed

-1 year of high-dose interferon

-Developed Lung Mets: Did 6 cycles of high-dose IL-2 under Dr. Brendon Curti (highly recommend)

-All Lung Mets either disappeared or stopped growing--1 year later, no issues in the Lungs

-Rewind a bit...December of 2015, had a seizure. Found 2 Brain Mets. Treated with Gamma Knife. All good, until this spring, when one continued to swell/grow, etc. Had a Craniotomy to remove it. Was paralyzed on my left side, but with therapy and with the swelling going down, got around 95% of function back. Excellent Surgeon: Dr. David Adler.  

-Since the surgery, I have had a few small seizures.  I'm about to have my 3 month MRI to examine the brain. Currently just taking anti-seizure meds, and not doing any other therapy

-I've experimented with cannabis treatments as well, including high-dose Rick Simpson Oil--and while I'm not certain this has helped with acute issues, it has certainly helped with maintaining healthy body weight and overall positive disposition and dealing with depression.

OK...So, fast forward to today.  I'm not going to lie and say I'm not affraid about what lies ahead: I'm very affraid.  So far, I've taken each day at a time, and have been super positive in my disposition--it's all I have left.  Recently, I've had to stop driving, riding motorcycles, and doing many of the other things that give me a sense of freedom and enjoyment.

Knowing that the IL-2 doesn't work over the Brain/Blood Barrier, I worry each day about what the future holds.  Is it more Brain Surgery? Is it sudden death due to a seizure? etc. etc. I know darn well no one can answer that, but I wanted to hear from others that might have had a successful IL-2 run, and then hit a wall with the Brain Mets...  In short, is there any hope for life after Brain Mets?

 

-Ben

Benjamin

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KAF's picture
Replies 1
Last reply 8/17/2016 - 9:32pm
Replies by: MoiraM

3 weeks ago - 1 week after my 3rd ipi/nivo dose I got horrible headaches.  MRI showed an inflamed pituiatry.  I was put on 1mg/kg of prednisone for a week and then weaned down to 5mg/day over the course of 2 weeks.  My headache got better but never totaly disappeared.  On the 2nd day of the 5mg (yesterday) the headaches came on stronger again and i was having blurry vision.  Went in for a stat MRI and it showed the pituitary being the same size as it was 3 weeks ago.  I had an IV push of 80mg steroid but I couldn't stay overnight (I'm a single parent) so I came home and took the 1mg/kg again this morning.  THey want me to go to the ER for a drip but I can't leave my kid so I will go into the ER for the drip in the monring.  The headach is greatly reduced but is still there.  My question for anyone is should the steroid be eliminating my headhache entirely after starting the predinisone or is it normal to take a dary or two or more for the headache to subside.  I feel much beter and my eyesight is normal now so I don't think going to an ER tonight necessary.  Not sure what happened to my pituitary...maybe they tried to wean me too fast.

anyone else have any input or experience???

thanks

Karen

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btcedarr's picture
Replies 8
Last reply 8/20/2016 - 10:37pm
Replies by: Jacklyn, btcedarr, Janner, Alce123, Anonymous, Bubbles

Someone mentioned that Janner has a forum for these stages, but I can't find it. Can someone post the link?

Thanks

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BrianP's picture
Replies 12
Last reply 8/23/2016 - 2:41pm

Can anyone recommend a melanoma specialist at MDA.  Dr. Davies was recommended but can't get in to see him until Sept 2.  I can probably get in with someone else next week.  Is there someone else just as good or wait one more week for Dr. Davies?  Thanks for any recs.

Brian

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anp21's picture
Replies 23
Last reply 8/28/2016 - 1:25pm

Hello all,

I have decided to post in hopes that someone will be able to help me to calm my nerves during the waiting time.  I have a wonderful support system; my husband, family and friends have been so amazing since I heard the words melanoma, but I still feel so alone.  It does not help that I have severe anxiety and always fear the worst. Unfortunately, this time, my worst fears are a reality.  

On July 28, 2016 I received the news from my dermatologist that a mole removed from my right thigh was indeed a melanoma. My dermatologist described it as superficial and stated that we caught it early. She scheduled me an appointment with a surgical oncologist and an oncologist who specializes in Melanoma. From my pathology, I understand that it is .59mm in depth, clear margins, no ulceration, mitosis is a 1, Clark's Level III.  

After waiting two anguishing weeks, I finally saw the two oncologists last Thursday.  I first saw the surgeon and his plan involved a WLE.  He did not feel that a SNB was necessary because of my age (31).  When the I saw the oncologist, he felt it important to also do a SNB and a PET scan.  He explained he felt it necessary due to the level 1 mitotic rate. He feels that my stage at this point is a T1b, but will not know until surgery and pathology is complete. 

My PET is scheduled for Friday and my surgery for Monday.  In the meantime, my anxiety is at a fever pitch. I am terrified that my melanoma has spread to my nodes. I am mostly feeling panic because at first, my derm and my PCP both said I would just have to have a WLE and I would be done. Now that I must also have a PET and SNB I am out of my mind with fear and anxiety. I just would like some insight from others who have experienced a similar situation/feelings.  I have a 10 month old son and I am terrified he is going to have to grow up without his mother.  

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/16/2016 - 11:39pm
Replies by: KMick, Brice311

I am waiting for the results of a biopsy done yesterday. I was told to expect a call in 7-10 business days, so I guess I have another 6-9 to go. I'm not really sure what I'm looking for here. Maybe just a place to share my story.

About 6 weeks ago, I accidentally ripped off a lifelong mole with my finger nail. It did rip off quite easily, which I know is a red flag. The mole has always been slightly raised and mostly skin-colored, with milk chocolate pigmentation in the left corner. I know that isn't normal, but I was always told it wasn't worrisome since it had always been that way. After it ripped off, the skin healed on its own within about a week and a half. Within a month, the mole was back and looking pretty much how it had before. I was concerned about how easily it had come off though, so I saw my regular derm. She looked at it with a dermascope and didn't really say much or seem too concerned, but asked me to come back in two weeks (yesterday) just so she could check it again and make sure it was alright before I left town for college (this Friday).

Last week, I saw a different doctor for a second opinion, mostly out of paranoia and a desire to be sure. This derm also looked at it through a dermacope and her exact words were "this pigment looks great" and "it looks fine to me." That put my mind at ease and I went to my regular derm yesterday expecting to have her comments echoed. 

Excpet my derm looked at it again (sans dermascope this time, I think. It's on the back of my shoulder and I wasn't watching her that closely, so I can't be sure) and decided she wanted to take it off. She didn't really say why or tell me what the red flags were. She just said she wanted to make sure there were no "abnormal cells." When I asked her what to expect from the results, all she told me was that she didn't think it looked "severely abnormal or anything."

It worries me that I got the all clear from one doctor, but then got such vague responses from my regular doctor. I know the mole has always been there and has always been raised. I know there has been one corner of pigment. However, I'm not sure if the pigmented area has grown or changed at all over time. When I think about it, I think maybe it has, but that may just be my anxiety. 

I'm really scared that it ripped off so easily because I have heard that is a sign of advanced disease. But could a board-certified, trained dermatologist typically look at advanced melanoma through a dermacope and determine it had "great pigment?" Would it appear more innocuous than it actually is because it recently grew back?

For reference, my regular derm is actually an FNP. She practiced as an RN for seven years, and started working in dermatology as an FNP about two years ago. The second opinion doctor, who thought the pigment "looked great," was a board-certified dermatologist (an actual MD) who seems to have been practicing for about 11 years. 

I know nothing can diagnose but this biopsy, but would it be typical for a lesion to "look great" under a dermascope, but turn out to be advanced melanoma?

I'm likely being overdramatic about the whole thing, but I'm an otherwise healthy 21-year-old getting ready to start my senior year of college and suddenly I'm imagining all of that being derailed by a huge cancer battle. I'm afraid of never getting to have a career or kids.  

I'm just trying to figure out what I should realistically be prepared to hear when I get my results. I don't want to be completely caught off gaurd.  

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Mat's picture
Replies 3
Last reply 8/16/2016 - 11:13pm
Replies by: Bubbles, Mli0709, khubes

Got spam-blocked on Eva's thread, so posting here:

Eva, I'm sorry to hear about your present status.  When I met with Dr. Wolchok before starting ipi-nivo, he mentioned that Sloan has seen some patients do well on chemo following checkpoint inhibitors (synergistic-type effect).  I've kept this in mind for myself.  Chemo-only--not so exciting.  Chemo with the possibility of a synergistic effect and a bridge to something else--more interesting.  I'd also consider attempting another run on BRAF-MEK.  (My recollection is that you are BRAF+.)

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