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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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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Anonymous's picture
Anonymous
Replies 14
Last reply 8/16/2016 - 8:38pm

My father in law was diagnosed 5 years ago with stage 3b melanoma. Last summer, it moved to his liver and intestine. In May, his pet scan revealed 2 brain mets in the right and left frontal lobes. He had radiation done within 2 weeks, targeting the two lesions. On July 5th, he had a MRI to check on lesions since undergoing radiation. The smaller tumor showed no regression or progression. The larger tumor showed significant progression of 1cm. He met with a neurosurgeon yesterday and surgery is not an option. He has to wait another month for another MRI and to get more information. Medically, he cannot have another before then. He is extremely lethargic and low brood pressure. Dr said to contact him if feeling symptoms of tumor growth. He is currently on opdivo infusions that have significantly helped tumors in liver-none lighting up. He still has the cancer in intestine. I'm very concerned about prolonging treatment, knowing brain mets are fast growing. Any suggestions? My in laws stated that they will not get a second opinion. Anyone know of helpful clinical trials that involve brain metastases? Thank you so much! 

 

Blessings to all! 

 

 

Libby 

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/16/2016 - 1:29pm
Replies by: Anonymous, asdff12344, jennunicorn

Hi everybody:

I'm new here.  Here is a little background.  I am 27 years old, male, Asian.  I have been sunburnt before.  More importantly, I got sunburnt a lot in high school (I used to live near the beach) to the point my skin started to peel.  I have no history of skin cancer or melanoma.  I had no issues with it until now. 

Recently, I checked my already-existing mole (I think it is a mole).  I had it for a couple years (maybe 2 years).  It does not look like a mole.  It is circular with no middle (the middle is a normal skin patch).  There are no ABCDE signs.  What caught my eye was that it became darker.  Nothing changd about it, but it did grow darker.  Thus, the doctor wanted me to get a biopsy, which I did this morning.

I did go out to the sun last month.  One, in Las Vegas (swam outside for maybe an hour).  Second, July 4th (where I swam in the ocean for about an hour).  Would this make this scab/mole-looking thing darker?  Should I be worried?  The original color was a light brown.  Now it is a darker brown.

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KAF's picture
Replies 8
Last reply 8/16/2016 - 12:15pm

hi all

Has anyone lost hair from the ipi/nivo combo?  If so, did it grow back?

Also, my eyebrows, eyelashes and other body hair are turning grey - did this happen to anyone else?

Did 7 weeks of ipi/nivo and had to stop 2 weeks ago due to pituitary inflamation 

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Gordknight's picture
Replies 4
Last reply 8/16/2016 - 11:39am
Replies by: jennunicorn, Gordknight, MoiraM, Anonymous

First to start off I know that so many of you warriors out there have it so much rougher than I do and how you find the strength and will to carry on I only hope I can achieve some day in my life.

I had a stage 1a melanoma removed from my neck back in November of 2014 and have had many scares and removals since then (all of which were benign or midly atypical) I am kind of a moley white guy.  Age 33.  Anyway I noticed a new spot developing on my PALM of all places.  Luckily I was at my family Dr for an unrelated issue and he took a look at it and said he didn't think it was a melanoma (but I know he isnt a skin specialist) but it would be wise to follow up with my Derm.  I got an appointment with my derm for the 31st of this month and put on the wait list in case anyone cancels an appointment but of course I did the worst thing you can do and googled.  

Now I am convinced that this is an Acral Lintiginous Melanoma.  The pigmentation is on the ridges which is what inclines me to think so after reading liturature about them.  I know Im doing the right thing in going to see my derm (who is great) asap but it still makes me just want to crawl into a dark corner until that morning arrives.  Im sick with worry.  

I used to be a care free guy until I had my first melanoma and ever since then I have had my good days, but I still feel like the majorty of my life has been lived in panic and fear.  Anyway I guess I am just looking for opinions and encouraging thoughts.

I have included a picture of the new spot.  ( I know nobody here is a doctor and cant diagnose me).  Im just having a hard time imagining going through surgery again and more years of fear waiting for the other shoe to drop.. again.

http://imgur.com/qIaAiQD

Thanks in advance for your help.

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/16/2016 - 10:41am
Replies by: sfyfe, SABKLYN, MoiraM

Hi there,

I'm 24 and I've never really had a problem with any skin growths/discolorations.  But last week (about Wednesday) I noticed a sore/tender spot just below my left eye that was a slight pinkish color.  Fast forward to today, it's a large skin irritation with a large black spot to the left (picture below.  It's grown very fast, and while it's not very painful (about as much as a popped zit) It's obviously very concerning and stressful.  

Would you guys have any advice?  I didn't really know where to turn.  Thank you!

http://i.imgur.com/0X9ZWNN.jpg

 

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Mat's picture
Replies 14
Last reply 8/16/2016 - 12:11am

Well, it's been more than a thousand days (3 years) since my stage IV diagnosis with a heavy tumor burden.  My diagnosis came somewhat out of the blue (I didn't recognize the few symptoms I had) after being stage I ten years earlier.  Trust me, at diagnosis, no medical professional said to me--"don't worry, you have at least 3 great years left."  I've had (and may still have) multiple liver tumors and I've had 3 brain tumors.  If you read this forum and other sources, you know that those can be signs of a poor prognosis.  

Who knows what the future holds?  I take it one day at a time (or try to).  On this day, I'm happy to say that I have another set of stable scans under my belt since starting ipi-nivo in January.  I feel very fortunate to be where I'm at.  I don't assume for a minute that I have this thing beat.  Rather, I assume the opposite--my resilient melanoma cells will continue their Darwinian battle for survival.  I only hope that by the grace of our maker and highly competent medical professionals (together with some randomness and luck), I'll be able to continue my personal fight for survival and have the opportunity to continue to raise my kids, be with my wife and family, work and otherwise live life and pursue well-being.

Josh, Brian and Eva (and others, including Paul and Jamie), I've read your recent posts.  I feel your anxiety and frustration.  As you know, while not everyone has success stories, there are many folks that do (including those who have had success following multiple challenges).  I hope that you're able to move past your present challenges as quickly (and with the least amount of difficulty) as possible and that your stories are success stories.

Lastly, I've seen a few posts asking about whether ipi-nivo can work if you've otherwise failed ipi and/or PD-1.  While there is no clinical trial data on this, the answer is "yes".  (I failed both individually.)  I don't know if will work long-term, but I can tell you that it can work for at least 7 months.  I hope to be able to report back that it will continue to work for another 1,000 days--one day at a time.

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LizaC's picture
Replies 14
Last reply 8/15/2016 - 9:47pm

Hi
My partner is on day 4 of her first ipilimumab treatment. The cancer is progressing aggressively and we pray that the IPI starts kicking in. (She responded to brafi keytruda) why not ipi. .

She went back on brafi for a short time 2 months ago and ct scan showed mixed response. Mainly in the liver, since then shes had internal liver radiation, radiation for bone mets.

We decided to go back on brafi but only the dabrafenib not mekinist due to side effects. Cancer has continued to progress. We spoke to Onco last night and asked about going back on braf full dose. He said no point with dabrafenib as she still got resistance, but I feel that the dose wasnt enough.. he suggested continue with Ipilimumab and we could bring in mekinist. Does anyone know much about how these 2 drugs are together?, I can find anything on the net.

Things are getting very desperate now.
Regards
Liza
(Partner to Melissa)

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Anonymous's picture
Anonymous
Replies 5
Last reply 8/15/2016 - 6:26pm
Replies by: Anonymous, Brice311

Here's the Mole

 

https://imageshack.us/i/pozbaHfZp

 

 

No idea how long it's been there It's under 4mm I think. The problem I have is I can't afford to shell out for s Biopsy without sacrifice so please looking at the mole is it safe to watch and wait? Or because it's new should I remove it?

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Jubes's picture
Replies 4
Last reply 8/15/2016 - 1:49am
Replies by: Jubes, landlover, Bubbles

Hi all

i have not posted for a while as (fortunately) not much has changed 

however my 2 yr anniversary of stage 4 diagnosis had just past and I have gone back to work and so happy

if it helps anyone, pembro did the trick for me

i did 9 months worth but had terrible inflammation through my whole body so I couldn't move so I had to stop

as the tumour in my lung had shrunk down from 9 to 3 cm stable the doctors were happy to stop. We tried various drug combos for the ankylosis spondolytis symptoms but nothing worked until I started infliximab (remicade) in April. I have done a course of 4 infusions and have almost weaned off steroids now. Now we will decide if it is worth doing the maintenance doses but either way I am functioning fine for now and so very happy and grateful to all of you Celeste, Ed mat josh and not forgetting dear Artie 

anne-Louise 

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Shaneswife's picture
Replies 7
Last reply 8/14/2016 - 12:47pm

Hello,

I hope you are all winning your battles against melanoma. My husband is having a lymphadenectomy on Monday. It was supposed to be only the superficial nodes but the CT scan yesterday showed that all of the deep nodes are enlarged quite big so they have decided to remove those as well. Has anyone here had their deep nodes affected? How was the surgery and recovery? Did you stay in the hospital over night? He used to be stage 2b but now with this news hes stage 3c.

Thanks

Janis

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/14/2016 - 10:07am
Replies by: Tim--MRF

"Brisk lichenoid tissue reaction with dermal melanin pigment incontinence and focal solitary intradermal melanocytic nest.  The histopathologic features are not entirely specific. The main body of the lesion contains a brisk lichenoid tissue reaction with prominent melanin pigment incontinence into the dermis associated with lymphocytic inflammation. The findings are suggestive  of and favor a lichenoid keratosis.  However, I cannot entirely exclude the possibility of an almost fully regressed melanocytic lesion that is no longer discernible in these sections.  Additionally there is a solitary dermal melanocytic nest in the peripheral most aspect of the biopsy present at one lateral tissue edge.  This nest is present at some distance from the lichenoid tissue reaction and felt to be unrelated and incidental. An incidental solitary nest may be represented or perhaps the edge of an intradermal nevus focally sampled within the excisional tissue. Margins are narrowly free of the lichenoid tissue reaction."

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/14/2016 - 6:02am
Replies by: stars
Kare83's picture
Replies 4
Last reply 8/14/2016 - 4:03am
Replies by: Kare83, gazzz, JoshF

On my initial path report it says

"There is a moderate lymphocytic inflammatory infiltrate, consistent with a component of regression."

Looking up regression, from what I can tell this is good as it  means the immune system had identified the malignant cells as bad and go about destroying them, right?

Although I have stumbled across a page to help understand Melanoma Path reports and it says that regression can make it hard to work out how extensive the Melanoma was before regression occured. 

Also.. it was a very thin Melanoma, I know, but it states that there was focal invasion of the papillary dermis (0.40mm breslow), and in the wider excision got everything though I am slightly freaking out thinking about blood vessels and things that could help it travel... Is this why they say it can turn up in the lymph nodes later on? Because no one can really be sure if they got it all out?

I feel so bad I shouldn't be falling apart over this when others are really fighting this disease and I hope I am no offending anyone but I just have these bouts of anxiety over it that I can't control. Some days I am fine and others I just lose it! I guess the main positive is that it has made me very aware of covering up moreso and looking after my skin... carrying out monthly skin checks and taking photos of moles to monitor change. I just hate what it does to you mentally!

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JoshF's picture
Replies 22
Last reply 8/13/2016 - 7:26pm

So I'm just going to reiterate how sick & tired I am of this crap. To give a quick update...a few posts ago I mentioned tiny bump on scalp. Derm thought probably a hair follicle. Well of course not...it was "the crap" again. Now I'm in full panic mode because I really have to question if the ipi is working. I know in many cases it takes time and their is progression. I'm just distraught...I need things to start going in my favor. I wonder if I'll even make it to the infusion date...what else could go wrong? I just need a break from it all...

Be well everyone, I pray for nothing but the best for all of you!

 Josh

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

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