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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uccio2014's picture
Replies 4
Last reply 10/27/2014 - 4:57am

Hello all,

it is the first time i write here but i follow the site dialy.

Here my question:

there is someone under zelboraf for a long period?

any ned? and if so after how long? and for how long?

how did you detect it had stop to work?

Praying to go on  reading about all of you for years

Antonio

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MattF's picture
Replies 14
Last reply 10/26/2014 - 11:45pm

Hey everyone

So I am currently on Xgeva injetins fo my bone mets.  And I just finished Yervoy.

 

Had TAF / MEK Jan - Jun (failed in June and i went downward fast) 

Ipi Aug - Sept 

2 rounds of radiation (brain spots and abdomin) over the summer.

 

Start Keytruda  on Wed 

 

Thinking this is the last treatment

 

pretty darn scared.

Matt

 

 

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Anonymous's picture
Anonymous
Replies 0

HI Everyone,

 

I will be in chat tomorrow night and will see who else I can find of the old timers,  Hope to see you there

Monday night at 8 PM EST

Hope you can jon us 

Love and Light

Carole K

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Emcjones1's picture
Replies 17
Last reply 10/26/2014 - 4:54pm

I am 4 weeks post initial diagnosis, and 3 weeks post WLE and SLNB. Pathology identified micrometastases in two nodes. Can anyone else in a similar situation tell me how long their oncologist waited to do PET or CT scans?

I am a 50 year old female biomedical scientist with stage 3a melanoma.

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_Paul_'s picture
Replies 25
Last reply 10/26/2014 - 10:00am
Replies by: kylez, kalisama, Bubbles, _Paul_, Anonymous, Janner

Hi Everybody,

I haven't posted here for quite a while. But it looks like I am back! I reluctantly joined the stage 4 club last month, a little over two years from my initial diagnosis.

My oncologist suggested I embark on a cliniical trial which combines the standard of care, ipi, with irradiation of one of my tumors. The hope being that my immune system will recognize some of the matter from the tumor as antigenic, and combined with the ipi will produce a higher response rate than if the ipi was used alone.

We also talked about nivolumab, since it just got approved by the FDA and has a higher response rate than ipi. But the FDA has approved nivo only for when the ipi has failed. That sounded backwards to me, since it would seem like you should try the drug with the best probability of response first and then move down the line.

So then I got my first insurance statement from the ipi which came in at over $40k! I have never been much of a conspiracy theorist, but given the fact that Bristol-Myers Squibb makes both ipi and nivo, and that the nivo will likely cost the same or more than the ipi, it sure seems suspicious!

I talked to my Dr. about getting the nivo first, and he said that would be an "off-label" use of the drug and not covered by insurance.

Any thoughts on why I have to try (and fail) the ipi before I can try the nivo?

Thanks! - Paul.

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/26/2014 - 8:33am
Replies by: kalisama, Janner

Can blood moles be melanoma? I was first diagnosed in 2003 and have been NED since my WLE. I required no other treatment. 

I have a blood mole that has been there for a few years but is changing. I can't get into derm until Friday. Freaking out a bit.  TIA 

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Anonymous's picture
Replies 7
Last reply 10/25/2014 - 4:17pm
Replies by: Anonymous, Bubbles, Ginger8888, Ed Williams, Julie in SoCal

Hello

I posted before about my son -27 y/old with stage 3C. He is been seeing at Princess Margaret in Toronto, Canada.

He had a few surgeries to removed compromised lymph nodes, lesion on scalp and SLN. They found one lymph node with melanoma cells each time (2).

He had the 4th infusions of IPI every three weeks which ended end of July. Afterward, they found another lymph node with cancer cells (last surgery was a few weeks ago). He didn't experience too many side effects aside of fatigue and maybe some Gi issues from the med. He wonders if the IPI is working.

He will start the next phase of the trial with the 3 mg/kg every 12 weeks x 4 times. He refused to have radiation on his neck where the lymph nodes were affected and prefers to continue with immunotherapy. 

My question is: Did anyone experience slow response from this med and then becoming effective during the maintanance phase? I think the oncologist is hopeful that the immune system will kick in once he starts the maintanance phase. In the meantime, we are looking for more trials should we need to change directions. 

Thank you for your input!

M

 

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JimS's picture
Replies 16
Last reply 10/24/2014 - 9:59pm

Hi,Jim here from Ohio.About a year and a half ago,my mom got what I guess could be called a small lump-like thing on her arm.It looked like an infected mole or an infected bite of some sort.It was purple.Her regular doc said it didnt look like cancer to her and prescribed a cream for it.My mom said the cream seemed to help for a while but it ran out.When she called her doc,the doc said to see a dermatologist to be safe.The visit was today.The dermatologist looked and said she couldnt rule anything out.She said it could be an infected lesion,treatable skin cancer or melanoma,as she said some melanomas are purple.She did a biopsy and then removed the rest.We now wait 7-10 days for results and we are all scared.My mom just lost her sister,my aunt,to lymphoma and is certain she now has melanoma.Any advice or info would be greatly appreciated.Please help!!And thanks.

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Robins269's picture
Replies 3
Last reply 10/24/2014 - 12:20am

Hi, I am just posting here because I feel like I need someone who knows something to give me an answer..good or bad. My question is: have you ever known an itchy mole to NOT be cancer? I visited the dermatologist over last winter to have a mole checked. He assured me it was a friendly mole. Not a month later it started itching. I recently called back and they say they need to see me ASAP. That itchiness doesn't usually occur with a mole they aren't worried about. Does anyone have experience? I have to wait two weeks now and I'm scared! I have four little ones and all I keep thinking is they are going to grow up without a mom. Sorry if it seems dramatic, I'm just a worst case scenario kind of person.

Thank you!

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Anonymous's picture
Anonymous
Replies 4
Last reply 10/23/2014 - 4:51pm
Replies by: tsykes1, HopefulOne, POW, Janner

Good afternoon, I received my pathology report on 8/26/13 and was instantly seen again for removal of a melanoma in-situ. They told me not to panic and that is was all good but I would expect 3 month follow ups for 2 years. I am concerned because everyone around me tells me it's not a big deal but I read words within my report that unnerves me plus the re-excision was quite large (5mm). This is what I had, please let me know (opinons of course) on if I should be concerned or just consider it all taken care of.... " 2mm dark brown macule found to be malignant melanoma. 2x2x1 area of skin initially removed for study. atrophic epidermis with flattened rete, increased number of melanconsytes at the base of epidermis. Tehre is 'buckshot scatter' of these cells into the upper epidermis. The melanocytes course down the hair follicles. There is no dermal invasion but marked solar elastosi. There is a scattered lymphoid infiltrate..... " So they took 5mm the other day in the area.

From what I've read, that seems to be quite a bit for a 2mm, no staged melanoma in-situ. Any feedback?

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Girl52's picture
Replies 9
Last reply 10/23/2014 - 2:35pm
Replies by: Girl52, Squash, Janner, Anonymous, Lil0909, Linny

BIL still has no plans to see an oncologist. And he won't have followup meeting with surgeon who did his SNB and WLE until next week. He said yesterday that docs he has seen so far should be fired for cutting into his perfectly healthy arm and scaring him with dire diagnosis and then finding nothing.

For now, my sister is finished trying to influence her husband's decisions about evaluating and treating the metastatic melanoma he was diagnosed with via pathology report. She says I'm of course free to share with him directly what I've learned. I haven't decided whether or not to do that. 

Nothing has worked so far. And if insanity is doing the same thing over and over (offering info and suggestions) and expecting different results, I've gone around the bend. Having had a first husband who died of a rare and slowly deadly cancer, this is so hard for me. BIL is highly resistant personality, but I thought in a potentially life-threatening situation, he would listen. This is like watching a tornado approach and your dear one refusing to take shelter.

Will try to settle down, hope, and yes pray that he alters his approach. If he's okay with the uncertainty, maybe I need to learn to live with it.

Thanks for responding so thoughtfully to my many questions....with special gratitude to Janner and Linny. You are amazing people. Hope there's something about this thread that does or will help another member. Would be interested to hear whether anyone else has struggled with similar issue and how you handled it, with your loved one or within yourself.

I'll be reading and returning here for my own info and insight now, rather than passing learning on to sis and BIL, unless they ask. Keep up all good work.

 

 

 

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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ashlee12's picture
Replies 16
Last reply 10/23/2014 - 10:53am
Replies by: Teochasse, ashlee12, Anonymous, Linny, arthurjedi007, Janner

So I have questions about melanoma that I'm not to sure about . How does it spread and how does it get into lymph nodes? Is it a by blood thing?? 

 

Also so I read its a fast spreading cancer... Does that mean it can spread in a week a year ?? 

i currently have stage 0 so I wanna know what can happen

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Hi Everyone,

 

Just checking to see if anyone is going to the NYC Wings of Hope Gala Next Thurs..  Would love to get together.. Hope to  see some of you there.. 

Love and Light

Carole K

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michaelinsocal's picture
Replies 8
Last reply 10/22/2014 - 7:01pm

I started my 12 month treatment back in May, 2014. Made it through three of four weeks of IV high dosage, couldn't tolerate more than 3 weeks. Then I took a two week break and started the once a week self shots.

My question is for those who completed the 12 months, at any time did they reduce your dosage based on the side effects? I've had my dosage cut three times during the first 4 months. I'm taking exactly half of the dosage I started out with. My dr reduced based on my blood work and severity (nausea, fever, diarrhea etc) of the side effects.

I'm also interested to know if onterferon worked or failed for you.

Thanks in advance for any feedback.

 

Michael

 

 

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ashlee12's picture
Replies 4
Last reply 10/22/2014 - 6:58pm

So yesterday i was told i have melanoma... im only 22 and i feel that my life is over. next year i am getting married and i almost just wanna call it off i feel like im dying..

 

 

They told me that it was caught super early and im not even on a scale yet... they said its just on the surface. 

 

 i am getting it fully removed on the 28th..  im scared tho that its deeper then the thought or has spread in my body.. im very new here and lost and sad 

 

 

 

 

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