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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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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susanspotless's picture
Replies 4
Last reply 8/13/2016 - 6:13pm

 

About 3 weeks ago while showering I noticed a black spot at the base of my big toe. When it wouldnt wash off I tried scraping it off when I got out of the shower, but it didnt budge. I got busy, planning and getting ready for vacation and totally forgot about it.

Then we went on vacation where I got a bad dose of food poisoning on the last day. I am still not 100% but I started trying to scrape off that black spot again and when it still wouldn't move I started looking online.

I have had dozens of moles removed, they were all dysplastic. In Feb. 2009 I had  WLE & SNB for a stage 2A melanoma, ulcerated with a high miotic rate.  Unfortunately the WLE & SNB took place by a surgeon in a hospital AFTER the dermatologist had already excised the mole and then done his own WLE of the area.  I try my best to forget that and have done a darn good job of it for 7 1/2 years!

But now this black spot, sorry for the ugly senior citizen foot (:big toe left foot

It hasn't grown in 3 weeks or so as far as I can tell and doesn't look anything like the photos of melanoma of the nail I have seen online. I have to admit I haven't seen a dermatologist in 3 years but do you think I should start looking for one now?

susanspotless

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/13/2016 - 4:27pm
Replies by: geriakt, Beehappy, Polymath

Just curious to see what opinions there are out there.  My husband, stage IV, had 8mm tumor removed almost a year ago, unknown primary.  scans have been clear, Thank God.  12 opdivo treatments that ended in April.  The after effects of the opdivo have been worse now than when he was on it.  Theres been no other growths since the one removed, which is good.  Dr's are keeping a very close eye on him since theres nothing really to measure if the Opdivo is working for him or not.  The last 3 months he's seen his Derm and yesterday she noticed a spot she called pre cancerous on his face.  zapped it and said he would have a blister that would go away in a couple of weeks.  Seemed unconcerned.  Well Im now wondering, is this indicative that the Opdivo is not working or am I overthinking?  Something I am definitely prone to doing. 

I wonder if he should mention this to his onc?  He is scheduled for a PET scan next week too.

Thank you everyone.  You've been my rock. 

 

 

Bin

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Coach337's picture
Replies 1
Last reply 8/13/2016 - 1:10pm
Replies by: jpg

Anyone have a success story?  

Diagnosed in November 2015.  Originated from a mole on my inner thigh/knee area.  Since then:

1. excision

2. sentinel node biopsy (positive)

3. partial inguinal lymphadenectomy (all negative)

4. Yervoy (discontinued after 1 infusion due to uncontrollable side effects)

5. recurrence of tumors in the thigh/knee

6. TIL harvest

7. admission into clinical trial @ MD Anderson

8. several months of T-Vec injections

 

Found out a few days ago after an ultrasound that the tumors are spreading and increasing in size (and returned to the groin), so they are removing me from the clinical trial.  Brain MRI & chest/abdominal/pelvic CT in the next few days, then the "team" will recommend a new course of action.

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