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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Anonymous's picture
Anonymous
Replies 7
Last reply 6/10/2015 - 12:24pm
Replies by: Anonymous, Janner

I wonder what is the recurrence rate for a stage 1a melanoma. I have read that the recurrence in thin melanoma is low and the chances of spread local, regional and distance is low, but how low is it? Exist any statistics in thin melanomas grouped by breslow depth ranges or clark level? How  low risk is with a Breslow 0.63 mm, clark III mitosis < 1 no ulceration and primary on top trunk ? What are the chances of a recurrence? I have read some people with stage 1 turns to stage 3 or 4 some years after diagnosis.

Thanks!!!

M.

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blackcat4766's picture
Replies 3
Last reply 6/10/2015 - 12:02pm

Greetings,

im waiting for Yervoy to enter the UAE. I was wondering what kind of side effects does it give you?

Blackcat4766

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blackcat4766's picture
Replies 0

Greetings,

im waiting for Yervoy to enter the UAE. I was wondering what kind of side effects does it give you?

Blackcat4766

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DennysGirl's picture
Replies 6
Last reply 6/10/2015 - 1:26am
Replies by: Anonymous, DennysGirl, arthurjedi007, Mom2Addy

My husband is no longer physically able to work. He is stage 4 with mets throughout his body. We have been advised to file for disability. My question is does anyone have any advise for making it through the six months before you receive any money? Yes, I know we should have saved for an emergency fund...but we didn't.  I have always been a housewife and know that I will need to find work but I know we won't be able to live on whatever I am able to bring in got 6 months. Also when he quits he will lose his insurance... What then? 

Sorry, just a little frustrated at the system! 

Renee~loving wife fighting for her hubby! 

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amelanomajourney's picture
Replies 8
Last reply 6/11/2015 - 1:45pm
Replies by: gaby, amelanomajourney, Anonymous, mwconklin, Ames K

Hi there,

Just wondering if anyone else has completed the 1 month high dose 11 months low dose interferon protocol.  How long did it take you to get back to "normal" after?  Any residual side effects?  Does anyone know of women who have become pregnant post-interferon?  

Thanks!

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RGal's picture
Replies 5
Last reply 6/9/2015 - 4:35pm
Replies by: RGal, Ed Williams, Mom2Addy, Anonymous, Bubbles

Can anyone share their stories with dealing with brain mets?  My father's latest scan showed new tumors in his brain and the rad oncologist initially wanted him to start Yervoy and not treat tumors.  Last week half of his face began to droop and the latest scan showed growth of the brain mets so he is now doing 10 days of targeted radiation.  

Any stories good or bad would be much appreciated.

Thank you.

 

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Hi having had surgery to remove melonoma from my calf and leg the size of the incision was quite large and I am considering grafting the primary site. I will be starting Yervoy in a few days after the graft and have not been able to find any information regarding if the Yervoy has an effect on a graft. If anyone has had this situation I would appreciate the information either way. I look forward to posting the results from my treatment so that others can gain from my experience   

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Anonymous's picture
Replies 4
Last reply 6/9/2015 - 8:42am
Replies by: Anonymous

There is a article on the FB Melanoma .org.   Called detecting melanoma early.  I looked the comments and saw this one... cannot state this enough--despite all the photos you see online, most people, and most doctors, CANNOT identify melanoma GO TO A DERMATOLOGIST. THIS HAS A 100% KILL RATE AFTER A CERTAIN STAGE. They don't even bother with chemo.     

 

Why  would someone say this.  Basically we all will die from this 

Terri Sykes

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Anonymous's picture
Replies 6
Last reply 6/10/2015 - 8:44am

My husband was diagnosed last month with stage IV BRAF melenoma. No primay site found, but it is in his duodenum and may have some spots on the mesentery of the small bowel.  He had one lymph node removed from  under his left arm that was also BRAF melanoma.  He has just started on his chemo meds. He is taking Tafinlar + Mekinist.  3 days in he is doing well with it and so far has a wonderful appetite.  Any one with any information or experiences with these two drugs?

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Eileensulliv's picture
Replies 6
Last reply 6/10/2015 - 12:46am

On Thursday, I had a CT scan before my usual doctor appointment and Nivo treatment. The doctor said a preliminary look shows I am down to two tumors... One in my lung, and one in a lymph node in the mesentery bowel. Both tumors have shrunk approximately 50%! in a few days I should have the final report with actual measurements and tumor count, but what I heard in the office was incredibly encouraging news!!! 

I then went for my treatment. They give me a bag of Benadryl first, since I broke out in hives during my second treatment. Halfway through the Nivo, I woke up and vomited, had a fever and erratic heartbeat. I didn't really realize what was going on because I was so out of it. The fever and nausea persisted through Friday. Now I am just dealing with the usual GI issues. The nurse called me the next day and said they think the reaction was due to the funky cocktail mix of CT contrast, Benadryl, and Nivo on a fairly empty stomach. She said they are also considering reducing the Benadryl dosage, which would please me! I hate sleeping through all of this and then feeling groggy for hours...

 

I'm still on cloud 9 though! I feel like I won the lottery!!!

Eileen 

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Gordknight's picture
Replies 7
Last reply 6/10/2015 - 2:45pm
Replies by: Aundrea, Gordknight, Anonymous, Squash, Janner

Hi everyone. Sorry to be a bother. I can tend to be a hypochondriac but advice here always helps. I was diagnosed with stage 1a melanoma clark lv 2, .22 mm depth, no ulceration and less than one mitotic figure on the left side of my neck back in october 2014. Had wle done in november (initial lesion was removed with shave biopsy with clear margins). Wle excision tissue also came back clear. Since then i had one small issue where a part of my wle bled and needed re- excision to be safe. Came back with some abnormal squamous cells but derm said its nothing to be concerned about. That was a month ago.

Now i have found a hard lump a bit above and back behind my wle scar. Not sure if its a lymph node or what but i think it is. My dilema is im out of town till august first. Im going to go see an insta care doc today but dont know how much help that will be. How concerned should i be? Hard to not freak out and let my mind go to dark places.

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Anonymous's picture
Anonymous
Replies 0

I have not heard from Robbier for a long time. I would like to know how she is doing.

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liberty04281's picture
Replies 5
Last reply 6/8/2015 - 9:04am

After finishing Yervoy treatment I had my second scan. The first scan after I received the last infusion showed a small increase of one nodule in my lung, and there was nothing new. Seven weeks after I had another scan, which was good this time. Almost all of a few nodules that I had in my lung shrank, almost disappeared. My oncologist said it is a very good news, and I am among 10% of the patients who had this good redpond.
It is a good news, and I am very hopeful. The next scan is in two months
Liberty

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273c's picture
Replies 3
Last reply 6/7/2015 - 9:12am
Replies by: Bubbles, 273c, mrsaxde

My husband had surgery (lymph node tumor and one between liver and kidney) last week so at the moment he is NED.  We are waiting on pathology and some recovery from the surgery before we head down the path of IPI, ipi/Nivo or maybe just Nivo.   

 

So here is the wildcard, my husband has been itching for months.  He also has several patches of vitiligo.  Itching to the point of a precription antihistamine.  The day after his tumors were removed the itching stopped but by day four after surgery it has started up again although not nearly as bad. 

 

Anyone have itching caused by the melanoma?  Anyone else with pre-immunotherapy itching? What happens when you add in an immunotherapy that then causes itching?  How do you tell if the immunotherapy is working if there are no tumors and you are already have itching/vitiligo? 

 

Thanks,

Kathy

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Just saw this: http://www.bidnessetc.com/41406-amgen-inc-amgn-tvec-gets-green-signal-fr.... Sounds like another step towards virus therapy.

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