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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Scooby123's picture
Replies 2
Last reply 4/3/2017 - 2:06pm
Replies by: Julie in SoCal, Jubes

Hi all,

I had ippi 2 years ago and get pain in my joints especially in both rib cage area. The pain comes and goes. I know joint pain has been mentioned a lot over time with treatments, but anyone has had it in rib cage area which comes and goes. Can last a few days some times. At times I feel like I have been in a boxing ring so sore .

Scooby X

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Bubbles's picture
Replies 7
Last reply 4/14/2017 - 5:24pm

Hoping that the diarrhea and other difficulties have improved????  Holding you both in my heart each day.  c

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baesill's picture
Replies 10
Last reply 4/4/2017 - 8:53pm
Replies by: Ed Williams, Anonymous, SABKLYN, Mat, jennunicorn, baesill

Hello everyone,

I am 33 years old and was just diagnosed with stage 4 melanoma, 7 years after I had stage 2A.

I gathered 3 opinions in NYC to kick off treatment. A veteran at NYU and another veteran at Penn both had same recommendation. I met with the young rising star at MSK and he had a different suggestion, but after he ran it by the higher ups, they changed the recommendation to match NYU and Penn.

I can't help but feel he got it "wrong" in our initial appointment and it makes me really worried about choosing him as the lead on my case. I know doctors are going to disagree, but the other veterans assured me this first choice was a no brainer. And if my oncologist is going to be lead on managing side effects of potentially dangerous therapy, maybe it's not wise to rely on someone with less experience.

All that said, I really want to start treatment now that the path forward seems clear (for now).

Has anyone switched oncologists within MSK before to a more senior doctor? Is it easy to use MSK for second opinions down the line, if you choose to have your primary oncologist at another institution?

I guess I am trying to figure out if it's easier to switch doctors within MSK...or if it's better to choose someone more senior at another institution and then try to switch back to MSK (with different doctor then my initial appointment) after I get my 6/12 week scans. Or does anyone have advice about getting second and third opinions after those scans?

I have this feeling that now that I've met with one doctor at MSK, it's virtually impossible to change within the team.

Just want to say thank god for everyone on this board! I feel so devastated that I can't get an oncologist I deeply trust at the institution I want to be at. Any advice would be so amazing!!

Lots of love to all.

 

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Anonymous's picture
Anonymous
Replies 10
Last reply 4/15/2017 - 4:46pm
Replies by: Anonymous, debwray, Bradley75, Aaron

Has anyone experienced the development of cellulitis as a side effect to ipilimumab?

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Hikeratheart's picture
Replies 4
Last reply 4/10/2017 - 5:59pm

Hi all, 

happy to report negative results for two "bumps" I had on my leg and groin. At stage IIB, 2 primaries, I'm continually monitoring. 

I have a question about monitoring: I see a Derm and surgeon who have lots of experience with melanoma, but how do all of you determine if someone is a specialist? I don't think we have one in Milwaukee, and should I see one at this stage. I may need to travel, but for skin checks, and biopsies?

Also, I went in for a post surgeon appt today (same dr who biopsied my two bumps), and as long as I was there I asked him to look at two new areas. One dime size (itchy at times) irregular shape, waxy appearance spot, on my left forearm, and a pimple like spot near my primary, left upper arm. He said he could take them off, no problem.  My next skin check is 5 months away.

Should I just get the two spots cut out? Would they need to biopsied first?

I also had a primary on my back in July 2015,  and while in for my skin check up last month the derm saw a spot near that primary that looked suspicious and gave the area a shot of nitrogen. The thing is it touched my ( now healed) incision! I also didn't look before the PA gave the treatment. Which I regret.  What if it was Mel? It has scabbed over. Is it common for a spot to appear near a primary almost two years later.?

i feel like I have a handle on this skin ck stuff , but am really afraid I'll miss something. Or should I be concerned less about spots, and watch for changes? Please advise.

thank you

kathy

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Prd10's picture
Replies 5
Last reply 4/4/2017 - 9:20pm
Replies by: Prd10, Bubbles, Ed Williams

My full history is in my profile.  I'm currently on pembro with a liver tumor and a subcutaneous tumor.  The subcutaneous tumor doesn't appear to be responding to pembro, although I'm very open to it being pseudo progression I want to be prepared to switch gears if necessary.  I'll have a scan next week to confirm.  At this point I've only done pembro.  

I've been offered two trials if I qualify based on blood and tumor testing.

Trial 1 is IMCgp100 with durvalumab or tremelimumab.

Trial 2 is MGA271 with IPI.

Is anyone on these trials?  Any advice or information?  What questions would you ask (I don't see any current efficacy data, and fairly vague side effect profiles)? Does one seem better than the other?

Dr. Luke gave a good basic explanation of each and we will discuss again.  I'm just having a hard time wrapping my brain around it all.  I don't want to throw in the towel on pembro, but don't want to be foolish either.  This subcutaneous tumor just blew up when I started pembro.  It's big, red, painful, itchy but it changes throughout the 3 week cycles which makes me think something is happening(maybe it's just something bad happening) I know the liver tumor is more important so we will see what that's doing.

Would it make sense to ask for radiation on the subcutaneous tumor?  Would you try ipi/nivo before moving to a trial?  

Thanks for any advice!  Caitlin

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Christine.P's picture
Replies 1
Last reply 4/3/2017 - 2:22am
Replies by: Anonymous

A brief history: Stage 4a; tumors removed, from right calf and left elbow, skin graft, and lymph nodes removed under left arm in fall of 2015. Recurrance/new tumor just above inital tumor site in right calf in February 2017. Just had surgery (March 1) to remove this most recent tumor and was wondering about a few of the things in the pathology report. (Did 3 doses of ipi/nivo and have been on nivo alone for 9 months or so.)

I would like to know what the following terms might mean and, if anyone has had similar reports, what this might mean for treatment going forward. 

1. lymphovascular invasion present

2. perineural invasion present

I had a PET scan today and won't get to meet with my oncologist to go over the reports until Wednesday. Any information to help me understand what this means and to help me prepare questions will be greatly appreciated. 

Thank you!

Christine P. 

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/1/2017 - 10:10am

Ok, so I'm in. I always new that this possibility exists but never considered it for real.

I have family history of melanoma (my granparent died from one) and I had sunburns in my childhood and teenage years. Recently I had a termal burn on one of my moles. It was a small but asymmetrical mole. After the burn, may be a couple of months, the mole started to grow back. It grow to the sides of the scar and then stopped (it is small, less than 5 mm in diameter). A week ago it started (as I thought) slightly to itch. I do not know if I imagened it or not because it bothered me a lot (it became a bit bigger than it used to be, still assymetrical and it got way darker) - so I went to the doctor and got it out. 

Now the results returned and .. I have to wait for another results. So far it is all inconclusive. The diagnosis is abnormal, but as I understand from the report - the pathologist was worried about partially regressed melanoma. I read about how they diagnose regression and thought may be it was due to the scar tissue that the pathologist thought about regression. 

Any way, here is the report. I thought I will get some answers but now I'm lost. and I do not even know when the second opinion will be done (how long I should wait).

 

"This punch biopsy of skin has a compound melanocytic proliferation that is somewhat ill-defined with upward pagetoid scatter centrally and marked dermal lymphocytic inflammation, melanophages, and fibrosis. Immunohistochemsitry for Sox-10 highlights melanocytes, confirming the pagetoid scatter in the central portion of the lesion. HMB-45 is negative in the dermal melanocytes, which would favor benignancy in the dermal component of this lesion. The case is reviewed within our department with concern for a partially regressed melanoma with associated nevus. Accordingly, this case will be sent to ---- for definitive characterization; an addendum will follow.

FINAL DIAGNOSIS: Atypical melanocytic proliferation"

 

Now I do not know what to think - I guess, it is not benign. is it atypical mole? is it melanoma? do they suspect melanoma only because of the scar tissue (but the pathologist did not know that there was a recent injury to that area)?

I guess it looks more like a panic attack. because it is. I'm really scared. 

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registration closes in 3 weeks!  Safe From The Sun Walk/5K Run

Free Skin Screening
Health/Wellness Expo
Sunday, April 23rd  9:00am-12:00pm
Wilson Farm Park, Wayne, PA

www.safefromthesun.org

 

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Any idea for VEGFR or VEGFA blood test?

We are recomended to have these blood test for my mother who has vaginal melanoma. 

We are waiting for Foundation One biopsy results. Other tests should help for better diagnosis, please advise. 

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Meeka's picture
Replies 6
Last reply 3/31/2017 - 6:42pm
Replies by: Meeka, AliCat61, Anonymous, debwray, betsyl

waiting for follow up biopsy (of course waiting is the worst as we all know) As having had breast cancer aprox. 4 years back I find the second time around is both easier anc harder. The harder being telling my family "hey guess what its not  blackhead" I feel uncomfortable talking to them about how I feel as I dont want them to go through it again. So thank you for giving me an outlet. I guess its time to put my big irl pants on once aain and suck it up like w all do. I have 2 spots 4mm and 3mm on my face (of course  just when my son is about to be married) hat will make some nice pics lol) well thanx a ah ain for the "ear"

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J.bun's picture
Replies 16
Last reply 4/5/2017 - 3:22pm

Since melanoma has become part of my life, one of the aspects I struggle with is "sense of self/identity."  Of course I know that I am still me, but I feel different from the day-to-day... the people I encounter, my work colleagues, my friends, etc. I am sure this is true at any age... but being in my early 30s, my reality is something that makes most people cringe and uncomfortable  - and I know it.

Perhaps part of this is because I have intentionally limited the number of people who know my true diagnosis - and therefore I feel like there is a secret.  And perhaps part of this is because - despite other tear-jerking hardships I've experienced, there is nothing like this happening at your own, individual-level.

And, perhaps the greatest element is that is has legitimately changed aspects of my day-to-day... going to doctors appts, taking medication, getting blood work, experiencing and recovering from side effects.  Yet, I am thankful that there is treatment available, am otherwise healthy, have a caring & supportive network, and remain steadfast in overcoming melanoma and living my life...

It is likely there are others here that feel similarly, and am comforted that none of us are alone.

- J.

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Anonymous's picture
Anonymous
Replies 13
Last reply 4/16/2017 - 12:08pm

Just out of curiousity, how many of us are MDA patients? I live in Texas but travel about 4 hours to get there if driving (or 30 minutes by air) but I know people come from all over the country (and world). Each time I'm there I meet really interesting and positive people so I was wondering how many of you go there?

Tex

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wildpoppy's picture
Replies 19
Last reply 4/6/2017 - 8:55pm

Hello and thank you for reading

4 days ago I found some blood whilst wiping after a pee... Only a thumbnail's worth. As I was on my way to work and late, I had a quick look, thought I saw a kind of soft bump and red pin prick.

Later that day (under self investigation!) I couldn't really find what I had seen earlier that day, the pimple thing. However, I did find a patch of 'pigmentation' /mole/freckle thing on the inner crease of my labia (minor) Sorry if this is too much info...but I am so scared :-(

So, this 'freckle' is about 3mm irregular looking, kind of banana shaped maybe? but not clear enough for me to see... doesn't seem raised at all... no evidence of bleeding either.

Kind of grey/blackish looking. Diificult to see in mirror myself. I have a couple of grey patch markings also on the opposite side that are not so dark.

I made an appointment to see docs. I went today, and she is referring me immediately. I am in UK, and they have fast forwarded me to specialist under suspected vulvar melanoma :-(((

I have been reading up on it all, trying to be 'sensible'... But the prognosis for these things looks grim. There is limited information available, and what I CAN find, ugh... It doesn't look good....Mucosal melanoma has a poor prognosis? 

I am 44, one 10 year old boy who is my life, and I cant stop worrying. I have had many heath complaints in last few years (Celiac, Graves) and I guess the last few years have been tough.

If anyone has any advice, or knows anything that might help... Sincerely would appreciate :-( Thank you

 

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RitysMom's picture
Replies 8
Last reply 3/31/2017 - 12:19am

I am with my daughter and son-in-law in Houston. She had her first appointment on Monday with Dr. Tawbi. He was wonderful, very thorough, and answered most questions before they were even asked. He suggested two options for Kristine: a) join a clinical trial at MDA; b) begin ipi/nivo at home (Alabama). His preference was the clinical trial due to the toxicity of ipi/nivo, but knows it would be quite an inconvenience to come to Houston every three weeks. Before any decision can be made, however, he wanted to see what's going on in her brain. She had an MRI yesterday, and we meet with him today for the results. One question we didn't ask and he didn't clarify is what would happen if brain mets have returned. Does that limit her options?

Thank you,

Cindy

Cindy 

Mom of the beautiful Kristine

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