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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Save the date and register, April 23rd at the 90 acre park next to Valley Forge Park, free screening and a wonderful day of not feeling alone with this disease.  www.safefromthesun.org

 

 

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CindyCo's picture
Replies 6
Last reply 1/19/2017 - 10:23pm
Replies by: Anonymous, Polymath, CindyCo, Casitas1

Mom started radiation on Tuesday (5 sessions total, every other day).  So far, she has been mostly nauseous and tired.  They said that she would get some pain relief, but she hasn't felt it yet. Tomorrow is the second session, so hopefully it will come soon. 

We also found out today that they are planning to put her on Keytruda/Pembrolizumab.  She previously did one dose of ipi/nivo before stopping due to high liver numbers, so we hope that the pembro will be easier on her.  Originally there had been talk of putting her on nivolumab monotherapy, so we're not sure why the change.  I vaguely remember them saying that only Stage IV could have Keytruda back when we were first given the ipi/nivo combo treatment, so I'm worried that they consider her Stage IV now (the newest scan showed the same anorectal mass and regional lymph node spread, but also a few tiny lung nodules that can't be biopsied yet).  Maybe they are counting the lung nodules as mets already? 

At any rate, we are anxious to move forward and start infusions.

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Selle7's picture
Replies 7
Last reply 1/20/2017 - 6:29am
Replies by: stars, Selle7, Anonymous, Mark_DC

Hi everybody,

My Mom was diagnosed 3b in November 2015. Primary was 1.8, ulcerated, SSM on her right shoulder/chest. After one sentinel node came back positive for a 1mm micromet, she elected to have a lymph node dissection. No more cancer was found. 

Two weeks ago a small black lesion appeared about 1cm away from the lower part of her wide excision scar. The lesion was about 2-3mm. We received biopsy results today that it is melanoma. Her dermatologist explained that it had likely travelled through the skin and that she would be referred to cancer clinic for next steps. 

I know there are many knowledgable people on this board, probably more so than my mom's Derm. Could anybody offer any insight into what we are looking at next? The waiting game kills me. 

Thank you in advance. 

 

 

 

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sarah.brannon's picture
Replies 8
Last reply 1/19/2017 - 12:10pm

I'm going to see my oncologist on Monday day, but I just thought I'd throw this out there to see if anyone could answer.

I finished a year of interferon the end of September. Since it's supposed to wipe out your immune system, does this mean I'll need new immunizations, for like smallpox and measles and stuff?

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Don't know how significant this is or what can be done about it, but interesting anyway.  Hope someone will study it more.

https://wwwnc.cdc.gov/eid/article/23/2/16-1564_article

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Anonymous's picture
Anonymous
Replies 9
Last reply 1/23/2017 - 8:29am
Replies by: Anonymous, _Paul_

So short story, hubby stage IV, did 12 opdivo treatments that ended april last year.  Scans have been clear. Today, results of scan show "Activity", the doctor calls in it, in the nodes by the pancreas and activity in the intestines.  So need tests for those.  The doctor who is usually lighthearted was very serious in her speach and body language. 

Thoughts?  I dont know how to feel...

R

Bin

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Shaneswife's picture
Replies 14
Last reply 2/2/2017 - 9:50pm

Just wanted to share that my hubby's ldh came down from 1930 to 1100 in just one week of being on dabrafenib and tramentinib. Looks like he might be a responder.

Janis

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SaraBear88's picture
Replies 5
Last reply 1/18/2017 - 4:59pm
Replies by: SaraBear88, Aloha14

I finally saw a derm today and he removed two lesions via punch biopsy . I had the numbing shot at 3pm est to my finger for one lesion and it is now 12 am est and it's still just as numb as it was at 3pm . Is that normal ?

Sara Jackson

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Rita and Charles's picture
Replies 7
Last reply 1/18/2017 - 1:32pm

I haven't been on the site for a while, for a combination of reasons. First was that my husband was doing well - I took time off, the braf/combo showed significant success to a PET scan that showed no activity...so really hopefully NED.  That was in November, and then we went away for a month....being back, things started to change - fatique, continued weight loss, and use of medical maijuana as his medicine.  Our PET scan since our return was yesterday, and our oncologist called last night to say they found significantly life threatening results - he called my husband, who was totally confused. Then we get a call confirming an 11am meeting with a radiation oncologist, then we meet with our primary oncologist tomorrow.  The Radiation Oncologist  showed us the PET and the brain was "littered" with white spots, all over - he wanted an immediate brain mri - but with scheduling we got a 7:30am CT scheduled , then we go back to the radiation oncologist for results and "mapping", then back over to our primary to see what the heck about the other tumors that were found.  The radiation oncolgist wants to do 10 days of whole brain radiation, 10 minutes a day.  He said charles will lose his hair, no biggie and fatique - but then?  What happens then?  What happens with the other tumors?

For 9 months he was on BRAF, and was sick every day - he isn't going to jump back into potential daily hell......

Can anyone tell me about whole brain radiation - they feel it is urgent to do this at once? Thoughts...

 

The second reason I stayed away was I was fearful of seeing "cyber friends" not doing well.........it felt too personal to hear bad stories.

 

Rita

Rita

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JoshF's picture
Replies 23
Last reply 1/20/2017 - 2:44pm

So brain MRI was stable. That means TIL would be a go. I'm having 2nd thoughts. Is TIL my best option at beating this or getting into trial like Paul is looking at. I guess I'd like to ask Paul if he'd do TIL again. How tough was it? It's tough decision because it's a long time away from my kids.... What are response rates...is the juice worth the squeeze? I'm really torn...somebody give me some guidance.

Josh

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

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/22/2017 - 6:32pm

I am stage 4 metastatic melanoma. Was diagnosed in 2014. I have been NED, but last scan showed in lungs. I will start IL2 next week. Any information would be great.

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NSNewf's picture
Replies 4
Last reply 1/17/2017 - 3:57pm
Replies by: NSNewf, AvaL, Aloha14

Discovered lesion getting hair cut from different barber. Got it removed November 1, 2016. Initial pathology was inconclusive and 2nd came back positive.

1.7mm

IV

> 1 Mititic rate

No ucleration

Margins clear.

CT scan had no convincsing metastic activity.

Found the predictor on teh Sloan Kettering site that said I had a 8% chance of sspread to SNB.

Had WLE and SNB on Jan 4, 2017. Just got results.

WLE negative

SNB Postive for microscopic deposits of mestactic malignant melanoma - F**K!

I have used that word before but now I really mean it.

Being referred to ENT for CLND of neck and Oncology.

I  am in Canada so care is free but wait is issue.

I was convinced mysself it had not spread.

 

    

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Aloha14's picture
Replies 2
Last reply 1/18/2017 - 1:16pm
Replies by: debwray, Michelle820

The large seroma is causing a huge knot of muscles which is getting larger, below the large seroma on my inner leg. It's impossible to get that knot out because of so much pressure from the seroma. The two smaller ones weren't drained but at least they don't hurt.

So, the surgeon told me that the seroma would probably have to be drained more than once so I called this morning for an app't some time this week. But due to the holiday yesterday which is the surgeon's clinic (Monday) day to see patients, clinic has been canceled this week and there's no app'ts. Ugh. Not even to see a resident or another doctor. This is nuts. So going in next week. 

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Hello, all. I do not have melanoma at all, at least that I'm aware of, and am hoping it stays that way.

Some background: I'm a 28-year-old male with a family history of melanoma (my aunt was 28 when she first developed the disease). Recently I noticed that a mole on my back, which I've had for many years, has grown larger.

It is normal diameter and seems mostly symmetrical, but is elevated from the skin, squishy, and has a cratered top that is tender to the touch.

Taking a shower, for instance, is painful when the water hits my back. It seems to be mostly pinkish, though the very top is slightly darker, closer to brown. It appears a little dried out. There is no hair growing from it.

I've already made an appointment with the dermatologist, but can't be seen for two weeks. Do I have cause for worry?

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/17/2017 - 6:42pm
Replies by: Nemesis, Everymoment, Anonymous, jbronicki, Nick C

I had my surgery on Friday the 13th.  All went well, but I'm so sore.  It was below my left shoulder blade and the lymph nodes were removed from under my left arm - that hurts the most. The next 2 weeks are going to be difficult while I await my results.  I would appreciate prayers that it has not spread to my lymp nodes.  Thank you!!

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