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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Has anyone else diagnosed as Stage IV with brain mets had flushed skin with prolonged blanching? We had our four week post SRS check yesterday and the Radiation Oncologist took an interest in it. He is the one who had prescribed Dexamethasone for brain swelling  after the SRS, so had it been due to the steroids I think he would have mentioned it. I've asked my husband to check with his Primary Onc but he's hesitant. We start Yervoy on Monday. Thoughts? Thank you. 

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staylor's picture
Replies 3
Last reply 2/12/2015 - 12:48pm

I am 3 weeks post op from a melanoma removal.  The area is just below my knee.  The skin graft did not take.  How long will it take this area to look normal and heal?

Suzanne

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I need to get an elderly Lady in

Laguna Hills, CA in contact with someone that can help her get a referral from Kaiseer to A melanoma specialist at UCLA..  Her Kaiser Onc told her that she stands no chance of survival with mucosal melanoma and that Kaiser will not refer his patients to UCLA for opinions nor treatment.  This lady has not even had the WLE yet.

 

 

I'm me, not a statistic. Praying to not be one for years yet.

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clthomas2131's picture
Replies 7
Last reply 2/11/2015 - 3:03pm

I have been lurking on this board for a couple weeks now and finally decided to post... I was diagnosed on 1/26 by my ENT of having stage 4 metastatic melanoma over the phone no less... Back before Christmas I was hit with a stomach bug that went around our whole house. Over the course of the weekend I took it easy and then got up to head to work on Monday and found a swollen lympnode in my neck.. 3 visits to different doctors over the next couple weeks for antibiotics and steroids and was told if it is there when you get back from vacation see an ENT. No one seemed concerned at all, no other symptoms. Even at ENT she did the biopsy and with no symptoms she was thinking infection, something minor. Well after she gave me the news I had my first visit to an Oncolgist and went in for a PET scan. According to the oncolgist my nodes in my neck lit up as did a real small spot in 1 lung but said it may be nothing at all. He wanted to send me for surgery on my neck before we discussed other options. I decided to get a second opinion at a Cancer Clinic which I will have this Thursday... With a wife and 2 young girls at home I am lost on what to do...All I have to go on is "google" and frankly that is scary and depressing. I am the one who supports the house and carries the ins so we are lost..  Any advice? Questions we should ask? Anything postive to go on?

 

Thanks!

 

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yazziemac's picture
Replies 3
Last reply 2/11/2015 - 8:59am
Replies by: yazziemac, Jubes, joelcairo

Hi everyone

I am wondering what Stage 4 people's experience has been in qualifying for travel insurance?  My husband, Pete, has been inquiring with our insurance carrier but it has been hard for him to get straight answers.  How do others cope with this situation?  The idea of never being able to fly out of the county together again is very hard for both of us to accept.  Especially because we live in Canada, which is very cold in the winter!  Any advice would be most helpful.

Thanks in advance,

Yasmin

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ashlee12's picture
Replies 2
Last reply 2/11/2015 - 7:58am
Replies by: ashlee12, Janner

So today was my follow up appointment from whe. I was diagnosed with melanoma in situ.. So I had my check and he said everything looked good... Well now I've been moved to appointments every year... Which suprised me .. I know if I see something weird I'll go in but idk is that standard??? 

 

 

I have have an anxiety disorder and I'm nervous about a new melanoma pooping up .... Any advice or anything you know what new melanomas???

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csellers23's picture
Replies 6
Last reply 2/11/2015 - 4:25am

Got first dose of keytruda. Wanting to know what side effects you got, the more doses you got. Did they get worse, how long till you knew it was or wasnt working also im on taf pill. I had mixed results with the taf/mek combo so they took me off that . but put me back on taf after new met were found on the brain and keytruda,, and did anyones tumors get bigger before they got smaller. I am haveing pain all o ver even with pain meds, even the bottom of my feet hurt! Worse in morning and right after i take pain meds but i d i nt know if its from taf ir keytruda. Thank you sorry for typos my phone is acting up.

Crystale

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Jsneathen21's picture
Replies 11
Last reply 2/10/2015 - 11:11pm

For some reason I am overwhelmed with my skin graft it is causing me to cry just looking at it... I know it sounds weird but it just does it to me .. I'm not sure of this has happened to anyone else? Or maybe I am the only one who thinks it looks very disfiguring... It's only been two weeks of healing and it just looks so horrible and looks so deep ! and I can't help but cry when I see it! Is it stupid to get counseling for it? Do I need it? Please tell me how you delt with it! Thanks❤️

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Jen P's picture
Replies 5
Last reply 2/10/2015 - 11:05pm

My husband (Stage IV) has been on the taf/mek combo for a couple months. We just got scans yesterday and while the tumors shrunk dramatically, two "new" small tumors showed up on this scan in addition to one small one on hip and arm.  Has anyone had a "mixed" response on the combo?  Our onc thinks maybe these new tumors showed up in the 2.5 weeks after the first scan and before we started the combo.  Thanks!

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New drug to be trialled on melanoma patients in world first on-melanoma-patients-in-world-first/story- 

 

IN a world-first, a drug will be trialled on Victorian patients with melanoma so advanced it has spread to their brain.

The principal investigator, Associate Professor Georgina Long, of the MIA Poche Centre, said this was the first trial of immunotherapy treatment nivolumab on patients with melanoma in their brain.

http://www.heraldsun.com.au/news/victoria/new-drug-to-be-trialled-on-mel...

I'm me, not a statistic. Praying to not be one for years yet.

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Carrie102's picture
Replies 6
Last reply 2/10/2015 - 8:48am

Hello,

I do not have Melanoma.. I have Merkel Cell Carcinoma. I am in a clinical trial with PDL-1. I am a complete responder. I am looking for people with Melanoma who have had a complete response to either PD-1 or PDL-1.. is there anyone on here who shares my similiar situation? I need advice, information, and answers...

 

 

Thank you

Carrie

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arthurjedi007's picture
Replies 1
Last reply 2/10/2015 - 4:58am
Replies by: JustMeInCA

Sorry I didn't post this sooner. It sounded like if your dad gets a little better he might be well enough to travel.

If so it seems to be getting more difficult for us non naieve patients to have a decent trial. There is one in Oregon so some distance from San Francisco but if he's up to it might be worth it. It combines Opdivo pd1 with anti-lag-3. I've been trying to get into it in Chicago since November but my body has kept failing me but I'm still trying to get good enough for it.

NCT01968109

Providence Portland Med Ctr
Portland, Oregon, United States, 97213
Contact: Rachel Sanborn, Site 0002    
503-215-2604

Artie

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buffcody's picture
Replies 4
Last reply 2/9/2015 - 4:58pm

This recent article in the New York Times should caution us all if we buy supplements to fight our cancers.  We may not be fighting cancer but our own health.

 

http://well.blogs.nytimes.com/2015/02/03/new-york-attorney-general-targe...

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kpcollins31's picture
Replies 2
Last reply 2/9/2015 - 11:13am
Replies by: Shelby - MRF, _Paul_

Does anyone here know an effective way to prevent these spammers from invading this forum? The latest is john243... I have marked most of these posts as spam, but am not sure what else to do.

It infuriates me that people would come to a site where people are in many cases fighting for their lives and then they get these promises of miracle cures - trying to take advantage of people grasping for a solution.

Kevin

 

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yazziemac's picture
Replies 6
Last reply 2/9/2015 - 8:06am

Hello

My husband, Pete, has Stage 4 melanoma but has been NED since a craniotomy and gamma knife radiation late last year.  His oncologist has suggested a PET scan to monitor him and we're unfamiliar with this process.  Could someone please tell me what is the general process is if something lights up in the PET scan?  Is the next step generally a biopsy?  I would just like to know what to expect.  Thanks in advance,

Yasmin

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