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.

Mystery Bump on Child

Hi! I've had melanoma in-situ and my sibling has. We have tons of moles and I've probably had 50+ removed. I'm pretty knowledgeable on all things melanoma. My 8 year old son has a a new small, red/flesh colored bump on his forehead. It's very harmless looking (doesn't itch or hurt) but it isn't going away. It has only been maybe 12-14 days. I know melanoma in kids can present this way. I WILL get it biopsied if it doesn't go away of course, but what timeframe do you think is reasonable to wait? I was thinking 2 more weeks and then get it cut out, but is that crazy?

Living with Stable Disease (G-Samsa and Joe)

Your comments on the NED thread really hit a chord with me.  I've been thinking of that very topic quite a bit lately.  G-Samsa, like you I am in a Ipi-Nivo trial and like you I've had a about a 50 to 60% percent reduction in tumors initially and now seem to have reached a stable status.  I did not realize what a common response this was with the anti-pd1 drugs until watching the immunotherapy presentation I posted several days ago on OMedlive.com.  G-Samsa, I think it may have been the study you are participating in which they posted the graph of responses.  If I remember correctly the gra

Lymphatic Mapping

Has anyone sucessfully insisted on lymphatic mapping for a Level 1 melanoma? I ask because my first primary was level 1 and then three years it spread to my lymph nodes, making me stage 3.  I now have a second level 1 melanoma in a different place. I'd like to request lymphatic mapping considering my history.

Surgeon General's Call to Action to Prevent Skin Cancer

Dear MPIP Community,

If you haven't already heard, the Surgeon General has issued a Call to Action to Prevent Skin Cancer. Please take a look at the MRF's press release to learn more about the Call to Action and what it means. The MRF commends the Surgeon General for issuing this statement and taking a great step toward identifiying important steps that will help reduce the rates of melanoma diagnoses. 

Sincerely,

Stage 4 NED long-term survivors sound off

I was originally diagnosed at Stage 4 (met to bone) w/unknown primary. Following resection and gamma radiation treatment at surgery, I have been NED for just over 6 years now. My Onc released me from oncology and turned me over to PC for monitoring. No scans (unless I have symptoms or some other reason to suspect return). I'd like to hear from other long-term, late stage NED survivors. Has anyone experienced long-term NED then had recurrence? How long were you NED? Just going through one of those periodic anxiety moments about having survived Stage 4 and looking over my shoulder again.

Melanoma and Sun.

HI

My husband is stage 3A since July 2012. He is with interferon pegylado treatment since October 2012. Since his diagnosis that we have no holiday. My husband is terrified of being under the sun, so is very difficult to go out somewhere. I do not know how to solve this issue. My husband used sunscreen but the sunscreen does not give the peace. He is now 40 years old.

Appreciate any advice

Regards

Gaby

Collecting data to try to getting some answers. . . .

Hi folks,

No one of us would like to be part of a big trial like this, but unfortunately we are.

Im thinking to collect some datas of each of us (just stage iv) that i think, crossing them we will be able to get some answers about why some treatments work o not. May nothing can be gotten but who knows, we are a lot of people and perhaps with a lot of data is possible to realize of something. This is just and idea. what to do you think about it?

New Member

Hi, I just had surgery this past week for melanoma in situ. The area was the front of my right shoulder and I have a 3 inch incision. Am waiting for biospy reports to return to make sure that all is clear. Can anyone tell me what happens after this? 

Progressed on BRAF / MEK after 5 months- now Ipi

Hi all,

- diagnosed with stage IV in Februrary with lots of tumors in lungs, chest, abdomen, liver, bones

- good initial response to Taf / Mek, last scans in May showed considerable shrinkage everywhere

- bloodwork in June already not 100% ok so put staging one month earlier to July 21

- results show considerable growth in chest, lunhs, one liver met shrinking, one growing....bones stable. I got chest pain and cough and I am scared to death which I guess is kind of normal.

how long i need stop Combo Braf/Mek to show progression in Pet/scan?

Hi folks,

Finally i have decided to stop with combo, i was talking with my doc about to start

Mek anti pd1, but the condition is to progress on ipi or braf inhibitors, then the only option i have is to stop taking pills before the next PetScan and show progression in it (now in NED)

Is a very tought decision but i dont have any other option if i want to avoid resistance and still keep these drugs with pottencial for the future.

I would be very gratefull any help from someone who has follow the same path

 

Juan

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