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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POW's picture
Replies 3
Last reply 1/25/2013 - 5:15am
Replies by: Owl, aldakota22, Linny

My, oh, my! What a wild ride this melanoma is!

After being admitted to hospice in-patient last week, my brother's condition has improved markedly due to dexamethazone treatment. Now he is too healthy for hospice and we are trying to find him a nursing home placement. Dexamethazone is not a cancer cure, of course, so this reprieve is temporary. But as Mark Twain said, reports of his death are greatly exaggerated at this time. The family is delighted with his improvement, but dreading the next set-back. My brother, on the other hand, is stil convinced that he can "beat the beast". What a crazy disease this is! 

If anyone is interested in this cargiver's feelings about this emotional rollercoaster, I did post about it on the Off-Topic forum. And so we continue the journey. I'll keep you posted about developments.

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dflohr's picture
Replies 6
Last reply 1/25/2013 - 11:38am
Replies by: Ali, NancyGM, Marcia1, Anonymous, POW

Does anyone have any experience with this drug? Has it worked for you and did you have any side effects? My husband had Stevens Johnson from Zelboraf so cannot go back on that or Ippi. Are getting a second opinion today but doing research on my own there is not a lot available until debrafenib and trametinib are approved. Thanks for any help  you can give me.

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dflohr's picture
Replies 0

Does anyone have any experience with this drug? Has it worked for you and did you have any side effects? My husband had Stevens Johnson from Zelboraf so cannot go back on that or Ippi. Are getting a second opinion today but doing research on my own there is not a lot available until debrafenib and trametinib are approved. Thanks for any help  you can give me.

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Anonymous's picture
Anonymous
Replies 10
Last reply 2/26/2013 - 10:40pm

 

 

LISA LYNN SCHMIDT (nee BLACK) With great sadness we announce the passing of Lisa, who courageously battled with Melanoma for the past 2 years. Lisa passed away peacefully at home, with her family around her on Sunday, January 13, 2013. She is survived by her loving and devoted husband, Richard and her beautiful little daughter Isabella, just 3 years old. Lisa's loss will be deeply felt by her mother Linda Smeaton, her father Welsey Black and her brother Jared Black. She will be sadly missed by her in-laws, Margaret and Robert Schmidt, Rob and Sarah Schmidt and their sons Tyler and Cameron. Lisa will be fondly remembered and sadly missed by her aunts, uncles, cousins and the many friends who supported her throughout her illness. The family is so thankful for your friendship and love during this difficult time. Visitation will be held at the Visitation Centre in Mount Pleasant Cemetery 375 Mount Pleasant Road (east gate entrance) on Saturday, January 19th from 10:30 a.m. - 12 noon followed by a celebration of her life in the chapel at 12 noon. In lieu of flowers, donations in Lisa's memory to the Princess Margaret Hospital Foundation for Cancer Research or the Temmy Latner Centre for Palliative Care would be appreciated

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Tritzy's picture
Replies 13
Last reply 1/25/2013 - 10:19pm
Replies by: Redhorse, audgator, Anonymous, Tritzy, Charlie S, POW

My boyfriend has just recently been diagnosed with melanoma. He hasn't actually been staged because we haven;t gotten the PET scan to see if it has spread but by the depth of the tumor from biposy the pathologist was fairly certian. From what they took it was 3mm deep but the tumor went deeper. This is scary. I have read alot and know how bad it might be. I was trying to keep this from him. He is sort of a hot head and I didn't want him to freak out and do drugs and drink like crazy. He is an ex-addict and an alcholic. Well lately he has been growing more and more impatiant. We haven;t gotten anymore treatment other than a biopsy because he has no insurance we have applied for PCIP and gotten approved but coverage doesn't start till febuary 1st. So he got an appointment with the county hospital through American Cancer Sociery. He thought he would get more answers but that isn't what happened. They told him what he already knew. This angered him which he has already been getting angrier and angerier. Then the other night awoke with terrible night sweats. This freaked him out so of course naturally he googled it. This told him how bad it probably is. The thing I have been holding from him in hopes that I can keep him happy for that much longer. He became very very angry, He says hurtful things to me and starts fights with others. I just don't know what to do. I feel so alone. I want to be there for him. I love him more than I ever thought I could love someone but being with someone that seemingly hates you and everything you do is really hard. I can't talk to my friends because our relationship hasn't been perfect and they just don't understand. They either say that its because of all the other things he does or that what we have just isn't love, people don't treat people they love that way. I just wanna yell at them. HE IS ANGRY BECAUSE HE IS PROBABLY DYING!!!!! HE TAKES IT OUT ON ME BECAUSE HE IS CLOSEST TO ME!!!! This is something I understand. I just don't know how to not involve my own emotions, To not get upset when he is angry at me. I just need someone impartial to talk to. Or advice.

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My boyfriend has just recently been diagnosed with melanoma. He hasn't actually been staged because we haven;t gotten the PET scan to see if it has spread but by the depth of the tumor from biposy the pathologist was fairly certian. From what they took it was 3mm deep but the tumor went deeper. This is scary. I have read alot and know how bad it might be. I was trying to keep this from him. He is sort of a hot head and I didn't want him to freak out and do drugs and drink like crazy. He is an ex-addict and an alcholic. Well lately he has been growing more and more impatiant. We haven;t gotten anymore treatment other than a biopsy because he has no insurance we have applied for PCIP and gotten approved but coverage doesn't start till febuary 1st. So he got an appointment with the county hospital through American Cancer Sociery. He thought he would get more answers but that isn't what happened. They told him what he already knew. This angered him which he has already been getting angrier and angerier. Then the other night awoke with terrible night sweats. This freaked him out so of course naturally he googled it. This told him how bad it probably is. The thing I have been holding from him in hopes that I can keep him happy for that much longer. He became very very angry, He says hurtful things to me and starts fights with others. I just don't know what to do. I feel so alone. I want to be there for him. I love him more than I ever thought I could love someone but being with someone that seemingly hates you and everything you do is really hard. I can't talk to my friends because our relationship hasn't been perfect and they just don't understand. They either say that its because of all the other things he does or that what we have just isn't love, people don't treat people they love that way. I just wanna yell at them. HE IS ANGRY BECAUSE HE IS PROBABLY DYING!!!!! HE TAKES IT OUT ON ME BECAUSE HE IS CLOSEST TO ME!!!! This is something I understand. I just don't know how to not involve my own emotions, To not get upset when he is angry at me. I just need someone impartial to talk to. Or advice.

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/23/2013 - 8:33pm
Replies by: Thandster, lou2

Just diagnosed as shown above with a mitotic rate of 10 per sq ml.  Since I have no idea what this means I am very concerned.  Can anyone help with this?

Thanks

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Just diagnosed as shown above with a mitotic rate of 10 per sq ml.  Since I have no idea what this means I am very concerned.  Can anyone help with this?

Thanks

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94z28joe's picture
Replies 7
Last reply 1/30/2013 - 8:48pm
Replies by: NYKaren, sgrain, 94z28joe, Ali, POW

So its been alittle over a week since my first infusion of ippi and it seems like I am already having side effects. Started last week with my abdomin area felt like I ate something really spicy(which I didn't). Then on Monday had some stomach issue and diearria took some imoduim and went to see the on call doc he said didnt think it was ippi related. Yesterday I started feeling really fatigued I went to sleep as soon as I got home from work only to wake up at 10 with stomach issues agian took some more imodium so far so good agian contacted the doctors office and they said just keep using imodium. I didnt expect to have the stomach issues and fatigue a week after the first does. Hopefully i gets better and not worse with the other does...yeah right I dont see that happening.

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Anonymous's picture
Anonymous
Replies 11
Last reply 1/30/2013 - 11:29am
Replies by: POW, Anonymous, lou2, Janner, Fen, Harry in Fair Oaks

can Stage I people donate blood?

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thrashter's picture
Replies 1
Last reply 1/23/2013 - 9:01pm
Replies by: NYKaren

finished 2nd round a week ago had PET on Monday. Now get results and 3rd round on 31st. 2nd round brought more sickness than first. Cant wait to see what 3rd round brings. I think the wait on results is tougher than the Bio. 

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/23/2013 - 12:20pm
Replies by: Janner, Anonymous, POW

Can someone please help what this means. I am so terrified of the results?  I had the wide excision

but they only took 5mm and am worried they did not go deep enough eithher.  The wle came back ok,

but should i go further and get 9mm??  Is this actually cancer yet?

 

PATIENT HISTORY: (original diagnosis)
Specimen from the (part A) skin
of back, right low, (part B) skin of axilla. Initial pathologic impression is
(part A) Clark's (dysplastic) nevus, compound type, inflamed, unusual with
features of partial regression. Margins negative for lesion.

_______________________________________________________________
FINAL DIAGNOSIS: )after re-review)
1. SKIN, BACK, EXCISION (OSS, S-12-13576 A, 11/02/2012,
MALIGNANT MELANOMA IN-SITU, ARISING IN ASSOCIATION WITH A COMPOUND MELANOCYTIC
NEVUS WITH ARCHITECTURAL DISORDER AND MODERATE TO FOCALLY SEVERE CYTOLOGIC
ATYPIA (aka DYSPLASTIC / CLARK'S NEVUS) (See comment).

COMMENT:
1. Examination of multiple levels reveals a growth of enlarged atypical
melanocytes arranged as single units and as confluent irregular nests at the
dermoepidermal junction and above it. The atypical melanocytes have
pleomorphic and hyperchromatic nuclei and some of them have prominent
nucleoli. Some melanocytes have ample cytoplasm and coarse dendrites. The
atypical junctional melanocytes merge with a second population of melanocytes
arranged as nests at the dermoepidermal junction and mainly as single units in
the dermis. The dermal melanocytes tend to mature with descent, and no
melanoma can be appreciated in the dermis. Interpretation of
immunohistochemical stains (S100, Melan-A, HMB45, and tyrosinase) confirm this
impression. A Ki-67 does not reveal an increase in the proliferative index of
the dermal melanocytes. Since this case was not grossed at our institution, we
hesitate to comment on the final margin status; however, the slide section
margins appear free of melanoma in-situ.

Overall, this is a challenging case, but the amount of confluence and presence
of upward epidermal spread is sufficient for an outright diagnosis of an early
evolving melanoma in-situ. There is a second population of melanocytes in
close approximation to this melanoma that is best categorized as a nevus.
Though slide section margins appear to be free, complete re-excision to ensure
removal and prevent recurrence and/or progression of this lesion is
recommended. This case was also presented at our daily quality assurance
conference and agrees with the interpretation above.

 

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Carolmcq's picture
Replies 8
Last reply 1/26/2013 - 11:37am

Hello all,
Over four years ago I completed a month-long intensive interferon treatment and, after a return of the melanoma, I went through isolated limb perfusion. Tomorrow I learn how to put together a leukine injection and administer it to myself. It will be two weeks on, two weeks off for a year. I've read about the anticipated side effects, and am wondering if anyone in the community has experience with this therapy. How much will it impact my day-to-day life? Will I be able to still work a 40-hour week? Do I need to put weekend trips on hold during the two weeks on? Do side effects lessen after the first two weeks?

Thanks for any personal experiences! I realize that each person will experience it a bit differently, but at least your stories will help me prepare.

Best,
Carolmcq

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vicuk's picture
Replies 7
Last reply 1/24/2013 - 10:18pm

Just to update you all on her latest scan. She's on the GSK Dabrafenib/Tranetenib trial. She was told 6 months ago that she had six months to live. This scan, so far, has been her biggest mentally as she was expecting the worst. Six months ago, she had tumours in her lungs and a big one on her hip. Last scan she was told lung tumours were immesurable and hip tumour had started to decay. This scan she's been told lung mets still immesurable and now hip tumour started to decrease in size. This was a fantastic result and also a massive hurdle for Helen to get over as she now knows that what they told her was wrong. It has given her hope. She looks fantastic, is working part time with me in school and part time on her family farm. She has absolutely no side effects on these drugs  except from slight photo sensitivity. It's unbelievable that she was told she would only have up to now. I think the point I'm trying to make is that there are remarkable drugs and developments afoot .

I read this forum daily and think of you all througout the day every day. I read this site for hope, inspiration and knowledge. I get it in buckets from you.

Kindest regards and very best wishes,

Vic.

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