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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Christine.P's picture
Replies 7
Last reply 4/23/2016 - 12:03pm

Hello everyone - 

I am stage 4a, on nivo for 6 months, and have questions for anyone who had/has brain mets that were sympotmatic. I have my next infusion on Tuesday and will be asking my oncologist about this then, but she won't know about patients' experience. 

I know and don't expect anyone to be able to tell me if I need to be worried, but sometimes it just helps to share an experience with those who get it, you know? 

So, for about a week now I have been waking up every morning with a bad headache. Already a migraine sufferer, I wasn't all that worried at first. These don't feel like my migraines as they are across my head (behnd my eyes mostly) rather than in one localized area. I also get nauseated and have actually been nauseated all day every day for this week. OTC meds take the edge off the headaches, which is good. 

The other thing - and the thing that actually concerns me - is the dizziness and the difficulty I seem to be having reading on the computer. (I teach online so I do spend a lot of time on the computer, but no more than usual these past months). I cannot follow the page when I scroll without squinting and I always feel like there is a slight - I don't even know how to describe it - pressure? in my head behind my eyes making it difficult to focus mentally. I wish I could describe it better. It feels like a heavy "fog" that makes my eyes feel unfocused and my brain slow and awkward. 

I've had days with this inability to focus occasionally throughout my life - but never all day every day for an entire week. This seemed to just come up out of the blue last weekend and I'm feeling a little stressed about it. Could it be some kind of delayed side effect of the nivo? 

Again, I know that no one can say if this is even anything except my doctor and probably some scans, but if anyone can share experiences that may be similar, I think I would feel better. Or at least I won't feel alone. 

Thank you for listening.

 

Christine P. 

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Maria C's picture
Replies 12
Last reply 4/23/2016 - 11:44am

Hi all - 

Tomorrow I get the results from the MRI & CT scan I took yesterday and am quite nervous about them. I'm paricularly concerned about the MRI, since 2 months ago was the first time they came back clean with no brain mets since all this began last summer.

For some quick background, I've taken all 4 ipi/nivo combo infusions during which time I've also had 2 gamma knife procedures. I've had severe reactions to the combo, including inflammations of the eye, liver, and lungs (with steroid treatment for each), full-body skin rash, severe loss of hair (3/4's out, with no signs of stopping), and now signs of vitiligo (white eyelashes, eyebrows, and now patchy 2-toned skin). All that said, I am NOT complaining because I'm already seeing results towards remission and I'll do whatever is needed to "battle the beast" and prepare for whatever battles lie ahead.

In preparing for my follow-up appt. tomorrow, my questions are:

1. Is there anything I can do or take to reverse the hair loss?

2. Ditto for the vitilogo?

3. Is there any proof that the Nivo maintenance protocol is tied to better stats for patients, and if so, where is this report specifically?

If anyone on this board has had these issues and have any answers or advice, please share. And also, should I be asking any other questions for tomorrow?

As always, thanks MPIP for this "think tank" patient forum!!

Maria - Stage IV, MM, partial responder to ipi/nivo combo

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Maxapooh's picture
Replies 4
Last reply 4/23/2016 - 11:01am

Hi everyone, 

My doc wants me to try a clinical trial with Abemaciclib ( LY2835219, Eli Lilly ) 

Has anyone heard of it? Any information will be appreciated. 

Maria 

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CHD's picture
Replies 7
Last reply 4/23/2016 - 12:32am
Replies by: CHD, JohnA, Mary-E, Becky, Teochasse

I can't find the post, but I could have sworn I read earlier someone said a specialist/doc told them there are no long-term survivors of mucosal melanoma?  Does anyone have more information on this?  Been told the same thing?  Studies?  Been told the opposite?  Known someone who is a long-term survivor?

Not sure how long-term survivor is defined.  I am 3 years out from my diagnosis of vulvar melanoma with radical vulvectomy.  Stage I-II with regression but no lymph node involvement.  Later diagnosis of vulvar MIS, three surgeries total, but last PET scan in August clear.

I had not heard that there are no survivors long-term.  Does anyone have more info on this? Long-term meaning how long?  I know this is going to nag at me until I figure it out!  Have tried researching it for myself but no luck.  Am not scheduled to see my specialist until August, so long time to wait for answers. :)

Thanks in advance.  I will happily accept personal stories. :)  Ugh, this disease just keeps me in limbo sometimes.  If this is what the specialists are saying, I want to know that, too.  But definitely curious how "long-term" is being defined here.  My understanding was that mucosal melanoma survival was similar to cutaneous in that depth, ulceration, mitosis rate, etc., all had an impact.  But I don't recall ever discussing exactly what "long-term" survival for us actually meant!

I realize not a lot of us here on the forum, but any insight appreciated.

Cheri

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/22/2016 - 4:25pm
Replies by: jennunicorn, Anonymous

http://imageshack.com/a/img923/8749/vHxodP.png

 

It's small but seems irregular.

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Anonymous's picture
Anonymous
Replies 8
Last reply 4/22/2016 - 4:17pm
Replies by: lakegirl67, Janner

It all started by visiting my Derm for the first time in 6 years for a full body check up. I'm 49 with a a lot of sun damge and regrettably used tanning beds as a teen. He didn't like the look of a "freckle" on my neck. He did a shave biopsy and here is the report:

Gross desription: a shaved portion of skin is received, inked for margins and submitted complete in one cassette with transverse sections taken. .9x.9x.1cm

Microscopic exam: there is a proliferation of atypical melanocytes within the basal layer. Some of these cells are seen migrating upward through the epithelium. These are changes seen in melanoma-in-situ arising within a dysplastic nevus. The lesion is completely excised.

Note: although excised, reexcision is recommended.

Diagnosis: Atypical melanocytic hyperplasia (melanoma in situ) arising within a dysplastic nevus, completely excised. (SEE NOTE)

My Dr. was on vacation so another Dr in the practice gave me the news and assured me that this was "NOT a   melanoma" and that "This added diagnosis was added by the pathologist to ensure that it would be treated as a melanoma in situ but your mole does not have all the criteria needed to make the diagnosis of melanoma.I realize that sounds odd,  keep in mind the pathologists intent is to ensure adequate treatment."

So an appt was set up for yesterday with my Dr. to have the WLE. When I met with him, he told me that it was melanoma in situ and that the pathologist was using "old terminolgy". What the heck?? I went through with the procedure because the treatment is is the same for either AMH & MIS. I think he did 8mm margins and I have a 4 inch incision on my front neck area!

He reassured me that this would take care of it, but I am not so sure I feel reassured about anything right now. I'm scared that these results will show something more sinister. I fear that there will be a reoccurance and I have a lot of questions. Can anyone offer advice. Why the difference in interpreting the path report? I called the path lab today but they won't let me talk to a path. I want to know because it matters to ME if this a Melanoma diagnosis or not!! Am I missing anything? Does this seem like a good path report in terms of info provided? Thanks!

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Maria C's picture
Replies 8
Last reply 4/22/2016 - 12:47am

Hi all,

As a Stage IV melanoma patient with a particularly aggressive type (mucosal), I am trying to get my head around the proliferating field of immunotherapy - who are the major players, who is working collaboratively, and whether any one of the new (or older) institutes plan to share their data with patients so we can make the most informed decisions possible in our respective corners of the world without expensive second opinions/travel. 

I realize I may be just dreaming, but still my innate idealism leads me to believe that the medical field will move in the direction of information sharing and collaboration over competition. I am particularly hopeful that the new Parker Institute will be a model for this approach.

But first, to identify where the immunotherapy breakthroughs are/will be taking place nationwide (and even worldwide), and how best to follow those advances? And in particular, as it relates to the melanoma community, where so many of the recent immunotherapy success stories originated.

I have dug up the following:

Parker Institute for Cancer Immunotherapy:
http://parker.org/initiatives/parker-ici

Bloomberg-Kimmel Institute for Cancer Immunotherapy:
http://www.hopkinsmedicine.org/kimmel_cancer_center/news_events/immunoth...

Roswell Park Center for Immunotherapy:
https://www.roswellpark.edu/research/center-immunotherapy

Ludwig Center for Cancer Immunotherapy:
https://www.mskcc.org/research-areas/programs-centers/ludwig-immunotherapy

Cancer Research Institute:
http://www.cancerresearch.org

If anyone has others to add to the above list, please do share, as well as your thoughts/experiences with any of the above - very much appreciated!

I would also welcome stories about how others have approached their research once you or your loved one was diagnosed.

Thanks so much, and have a beaufiul (and hopeful) day!

 

Maria - Stage IV, MM, partial responder to ipi/nivo combo

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Coach337's picture
Replies 11
Last reply 4/22/2016 - 12:35am

Stage 3c.

Partial lymphadenectomy of groin.

 

Started adjuvant treatment with Yervoy.  Was fine for four days, then had a few minor hiccups: itchy eyes, blurry vision, fever, chills.  Nothing too serious.  Then, out of nowhere - bam!  Developed colitis which hit me hard for about 5 weeks.  Doctors prescribed prednisone (and diphen/atropine), and continued to increase my dosage until it kept the dysentery in check.  

As soon as the colitis became somewhat manageable, the steroids were SEVERELY kicking my butt: insomnia, weight gain, insatiable appetite, muscle fatigue, cramping, and headaches.

So basically, that's where I'm currently at.  Ramp up the Prednisone and I get those nasty side effects (but no colitis), or the reduced prednisone dosage (with fewer side effects) but the colitis returns.  

So frusterated!  I haven't slept more than 3 hours at one time in over a month, and it's slowly starting to take its toll on me.

Has anyone experienced anything similar, and what eventually got you through it?

 

Thanks!

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Bubbles's picture
Replies 2
Last reply 4/21/2016 - 10:32pm
Replies by: Charlie S, jennunicorn

With more folks gaining access to the anti-PD1 products Pembrolizumab (Keytruda) and Nivolumab (Opdivo) more folks are asking what it actually is.  I've posted this before and it is rather rudimentary....but some folks report being helped by it....so here you go:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

If you put anti-PD1 in the search bubble on my blog you will probably find more stuff than you ever wanted to know....but if it helps...

Yours, c

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/21/2016 - 8:02pm
Replies by: KimberlyVU, Carly1974, Anonymous, Janner

Hi Everyone!  I recently received a diagnosis of melanoma from my dermatologist and had a follow-up appointment with a general surgeon.  Even prior to the diagnosis, I wasn't entirely comfortable with the dermatologist (it was my first appointment with her), as she only looked at moles I pointed out and became preoccupied with removing the mole that came back as being melanoma to the point that she didn't examine any of my lower body.  She recommended a general surgeon to me, who I followed up with last week and recommended an excision surgery.  I feel like neither doctor was very thorough, but I could also be to blame as I was pretty uninformed going into my appointments.  In my defense, the dermatologist made it sound like the surgeon was just going to do another quick procedure in the office the day of my appointment.  I'm planning to find another dermatologist to follow-up with, but i'm wondering if any other test/procedures should be being considered at this point.  I'm also wondering if it's wise to follow-up with someone who specializes in melanoma rather than just a general surgeon.  Sorry - I'm feeling overwhelmed by information on the internet and underwhelmed by the information given to me by doctors, thus far.  Below are the notes on my diagnosis from the dermatologist:

Microscopic description: The epidermis shows irregular acanthosis with broad rete ridges.  There is an increase in number of basal melanocytes with dense melanin pigment.  Aggregates of melanocytes with enlarged pleomorphic nuclei are present in papillary dermis.  They are occasionally seen in lower epidermis.  A dense lymphoid infilitrate is present below the above changes.  

MART-I stain is positive in lesional cells.

Pathological diagnosis: melanoma, 0.76mm

Any advice, information, or insight is greatly appreciated! Thanks in advance!

 

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Liisa's picture
Replies 3
Last reply 4/21/2016 - 1:52pm
Replies by: landonm, Liisa, Janner

Hi everyone!

I'm new to this forum, have been reading it for a while and decided to join since I haven't found anything alike in my native country (Finland). This seems like a wonderful place to get support and information.

I was diagnosed about a month ago with a melanoma in situ. It was in a new black mole at the back of my tigh a little above the knee. I've had the WLE done a week ago with 1 cm margins, haven't gotten the results yet. The cut has healed ok.

Now I've been experiencing slight pains in my tigh and groin, and I think I can feel a lymph node in the groin too. This pain started already after the original biopsy and has been coming and going ever since. I asked my doctor and he said it's nothing to worry about, and today I called an oncology nurse to ask again. She also said I shouldn't worry and that it's most likely just a reaction to the surgeries. I understand that melanoma in situ should not have spread to the lymph nodes and I'm trying really hard to believe that. But you probably know how the fear gets to you:( 

So I guess I wanted to ask if anyone has experienced similar kind of symptoms? Should I just wait and see how it goes or go to the doctor again. He practically laughed at me when I told about my concerns and said that don't you worry, this has been now dealt with. I sure hope so!

 

Have a nice day everyone, 

Liisa

 

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Anonymous's picture
Anonymous
Replies 28
Last reply 4/21/2016 - 6:27am
Replies by: UriahPH, jennunicorn, MoiraM, casagrayson, AllysonRuth, Anonymous

I looks terrible I'm so scared I literally can't breathe! 

 

Its irregular, has dark pigment. I've just seen a doctor who referred me to a Derm. She said she's not too worried about it but how can she not be with its characteristics?

 

Here are some images.

http://imageshack.com/a/img922/3856/4yfOm7.png

http://imageshack.com/a/img921/3748/GHz1SA.png

 

by looking at it, what are the chances of this not being Melanoma?

 

 

 

 

 

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/20/2016 - 11:39pm
Replies by: Janner

Hi All,
I was diagnosed with superficial spreading melanoma on my shoulder blade/ upper right back almost four years ago. I had the wide incision and no other treatment. My scar has been pink however recently I noticed the top is turning brown. There us a brown line going halfway down the scar line with a small brown spot a little below the line
There is no pain or bruised feeling when I press on it. My question is for people that have had a reccurance what did it look like? I have been watching it since Saturday. It does not seem worse but it's not going away either. The only other odd symptoms I have is an enlarged thyroid in my neck (I am seeing s specialist for that tomorrow). Could the two be connected? I know the chances are small but should I be worried?

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Hello and best wishes to every member on this board and their families.

I thought an update on my sister might be mutually helpful. Here's a quick rundown:

- started on Taf/Mek combo in Feb. - I posted then about fevers and other side effects she was experiencing

- she actually only lasted 2 weeks on a full dosage before side effects caused interruptions to treatment >> tried everything - dose reductions, stop & treat with steroids then resume again trials, Taf only at half dose, no Mek - none of that worked  

- the culprit that ended treatment was the rash she developed - a grade 3 and also considered an allergic reaction  (rashes seem particularly complicated) - her rash also did not respond to treatment, none of at least 3 creams they tried, anti-itch drugs and then heavy Prednizone 

- flipside of that is that the drugs were amazing - they were absolutely causing the mel to retreat and disappear - we were devastated when she had to stop but the plan then became to start her on ipi/nivo combo asap

- 4 weeks later, first signs that mel was on the move again became apparent

- 5 weeks later, first CT scan and, even with new growths appearing rapidly, her doctor was thrilled with the results as they showed huge reduction in the previously known tumours - there were new ones also, several smaller in her liver, (one bleeding in her kidney), one old that was larger (lung)  

- good news was that CT results did not reverse plan to start immunotherapy

- first infusion was last Thurs. (Apr. 14) - she was immediately extra fatigued and slept on and offer for the remainder of the day

- day 2 fever and headache (using acetominophen), appetite really dropped, some nausea (takes odazetron)

- has remained as above since, on and off - headache, fever, vomited today but this was only day 6

- several of her growths went crazy for a couple of days but one has already started going down again - have read on here that it's quite common - they are sore and painful though

- so far no rash, which is great!!

- I know it's early days yet - treatments are 3 weeks apart, first 4 with the ipi, then onto just nivo -- we also won't be surprised if she isn't able to complete all four 

She is really down about her syptoms but I believe it's evidence that the drugs are working. I am so thankful she is able to get this treatment and I have every confidence that she's going to have a great response!! I often wonder about the Taf/Mek >> if she might not have been a "complete responder" if not for the rash/allergy. 

If anyone has any suggestions on how I can keep her spirits buoyed, I'd welcome them! It's not so much that she's experiencing side effects - what really has her down is the overall effect of bad, aggressive cancer followed by aggressive drug treatments - she went from being an active gym member last fall to the point where she was issued a walker last month.

In just a few months, tumours invaded all skin levels, many bones and multiple organs, treatment kicked ass, which one doc told us made your body feel like it was "running a marathon" but then caused extreme side effects, steroids caused extreme and rapid muscle loss, her energy level went from pretty good to almost 'nil. She's very limited in what she can do and where she can go ... and sick and tired of being sick and tired ... 

Onto some reflections ... I've been on here all day - it's just that kind of site where the knowledge-bank can keep you for hours. It's been my number one source for everything I have learned about my sister's condition. I think I would be fearful for her all the time if it wasn't for the material I read here.

A couple of posts struck me today - one from Janner about being Stage 1 and still continuing to post and another discussing the new 5-year OS results just released.

The "resonance" of these two posts hit as I was deep in my research efforts and reading posts that were made back in 2011 and 2012 ... and it dawned on me that none of the names of the posters were familiar to me. I actually found myself going to the profiles of some of these people and looking for updates .. and finding nothing. I cried a few tears over this today ...

I'm so glad people like Janner continue to post. I wish others did, if they are still out there (Ed in Ottawa - I read everything you post - thank you!!). And I'm really grateful that, if mel had to invade my sister's life, it happened now and not five years ago. It does seem that hopes and promises are turning into reality.

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Mark_DC's picture
Replies 20
Last reply 4/20/2016 - 4:06pm

Dear Forum members,

Thank you for creating this forum -- have been reading the last few weeks since my Stage III diagnosis and surgery to remove melanoma on my leg (on crutches and home two weeks). Sad that I have to join you (!) but also amazed at your stories and also all the help you are offering each other. Through you I have learnt so much about this disease (Celeste's guide to all the abbreviations helped lots, she may not have realised, plus others' links to videos and talks).

I am sorry to start my first post with a question, and not with cheering on fellow sufferers as they await their scans, have been praying for them and thinking of them though, the last few weeks. Has been hard for me to write and I have been putting this off, but I need your help and respect your advice.

Melanoma on my lower left leg in 2014 recurred in February 2016 (am now T2aN2cM0). Fortunately my SNLB was negative both in 2014 and again in February. Had not expected this to recur :( Was assuming that it had been removed in 2014, odds were in my favour I thought! Now because it has recurred I am considered IIIB, although my lymph nodes are negative thankfully and no mets detected on CT and MRI. Live in DC and am being treated by Dr. Gibney (and I think Dr. Atkins too).

My question is, what should I do now? Should I take adjuvant therapy? I have been offered:

- Clinical trial between pembro and interferon (both adjuvant)

- Ipi as adjuvant

- Watchful waiting

It is very hard for me to decide. To me, the downside of the clinical trial is the interferon arm -- forum members seem to be pretty negative about this, about its efficacy and the side effects. What if I get placed on the interferon arm? Yet I know some of you are taking this route. And if it helps, then it could be worth it. Until recently, I would have preferred a clinical trial vs. ipi but this is not available. I understand there is a trial of pembro vs placebo, but not close to me (I could travel if needed, and know that many of you do).

I was going to take ipi as adjuvant, but when I sought a second opinion at the doctor noted the side effects, including in the worst case death (1 percent). The second opinion also cautioned me that side effects from ipi (maybe even from pembro) could limit my clinical trial options in case I move to Stage IV, which I kind of fear is likely given my progression from I to III. I might be prevented from taking some combination therapy clinical trials at Stage IV. I know some of you are taking this route though, so would welcome your advice, why did you decide this over watch and wait?

Final option seems tempting, my job involves international travel, and taking immunotherapy would kind of rule this out according to my second opinion doctor. If things flare up he thinks I need to be close to my doctor.

But I also dont want to duck out and take the "easy" option. I have a good job and I will not be penalized for taking treatment, I do not have to travel, it will mean taking a back seat for a while, but thats OK, my job will want me to do whats best for my health. I should make every effort to fight this thing and ideally kill it off. But is there a good way to do this? Do the medicines really work for III (my second opinion doctor suggested the immunothrapies worked better against solid tumours than cancerous cells in the bloodstream, because the tumours themselves have immune cells or something like that). Should I instead watch and wait, hope not to go to Stage IV, but if I do go to IV then try to fight it like many of you on this forum have? Or should I be pro-active now (but only if it helps, right?)

I meet my doctors on Wednesday and we need to make the decision then or shortly thereafter. I am very confused and would welcome any advice. They seem to recommend the clinical trial, but I am not so keen on interferon although on the plus side it does seem a known quantity -- I might be depressed for a year and buy one year, but side effects not disastrous, right?

I again thank you for reading this and also the many useful posts on this forum, and also the amazing stories, happy and sad, which always move me.

Good luck

Mark

 

 

 

 

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