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
Replies 1
Last reply 10/25/2014 - 7:13pm
Replies by: Carlos P

Anyone familiar with the use of dermoscopy or confocal scanning laser microscopy?  Both are said to be non-invasive.

Have had one lentigo maligna removed on back, big ditch there now.  Another one nearby just like it, said by different derm at teaching medical hospital said to be slow growing, just watch it.

Now I have a spot on forehead, thin skin only over bone.  It itches a little now and then.  Getting very scared.  Don't want another big incision, and don't know how they could do it at this location anyway.

So, looking for experience with these non-invasive methods.  And whether anyone knows of a place in the SE U.S. that does these first, before biopsy.

Thanks.

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/25/2014 - 6:35pm
Replies by: Ed Williams, Anonymous

My mother is at stage 3c . After 6 months of clean scans, we found in an MRI reoprt about her brain mets. She had absolutely no probelms. What are the options of treatement?

God bless you

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_Paul_'s picture
Replies 23
Last reply 10/25/2014 - 6:27pm
Replies by: Bubbles, _Paul_, kalisama, Anonymous, kylez, 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
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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Anonymous's picture
Anonymous
Replies 1
Last reply 10/25/2014 - 2:03pm
Replies by: Emcjones1

My original path report listed Mitotic rate of invasive component : 17 per square mm. My oncologist has open notes. Every visit she list all my findings Clark level etc but every time she write 70 mitosis per mm2. What or is there a difference? Thank you , hope this make sense.

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cbe's picture
Replies 2
Last reply 10/25/2014 - 1:45pm
Replies by: katie1, DZnDef

My husband is stage 4 with melanoma in the liver and lymph nodes. (Had  3 doses of ipi before switching to anti-PD1/Keytruda when it metastized to liver) Scan at 7 weeks showed spots still in liver but no new spread and latest blood tests had liver functions in normal range. So we are still waiting and hoping that the Keytruda is working.

My question is about prednizone which he's been on since August. He no longer has fevers, night sweats, headaches or any of the symptoms that caused him to go on the steroid in the first place and is now taking 10 mg/day. He's currently suffering from severe reflux which is not alleviated by Nexium and Zantac. He's tried going off the prednizone but when he does he's completely exhausted. We now understand you can't just stop.  Has anyone successfully tapered off from 10mg prednizone and any advice on how to do it, supplements to take, etc, to get the adrenal glands working again? There seem to be lots of different theories out there.

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BrianP's picture
Replies 2
Last reply 10/25/2014 - 11:29am
Replies by: Bubbles, tschmith

I'm registered and planning to attend.  Would be nice to put some faces with some names if anyone else is planning to attend.  I'm going to try and take copius notes but it's been a long time so my note taking skills may be a little rusty.  I'll come back and post any good info I learn. 

Brian

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odonoghue80's picture
Replies 15
Last reply 10/25/2014 - 10:26am

Hi all, have a question: has anybody had chemo? and radiation to a direct tumor in your body? not the brain. 

I have a huge (grapefruit size) tumor in my groin that will not shrink. I've had most of the treatments out there (Ipi, BRAF drugs, and Anti-PD1 Nivolumab). I'm just wondering I can do? I'm not feeling great about radiation and especially the location of this tumor in my groin. Possible side effects of fertility issues, lower testosterone. Not great. 

Again, I'm feeling pretty good right now through two rounds of chemo. It just has now shrink this huge tumor - about  I'm just afraid of what happens next. 

Thanks,

Shane 

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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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Emcjones1's picture
Replies 14
Last reply 10/24/2014 - 6:42pm

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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FayFighter's picture
Replies 5
Last reply 10/24/2014 - 10:44am

I have come to this site for hope countless times. Hoping this post helps someone like you all have helped me. A shout out to Celeste who originally planted the seed regarding this trial.

CT scan today (8 wks out) show 30% reduction in liver lesions. 

Thank you.

Angela

 

Recap re my husbands diagnosis:

july 2010 melanocytic nevi Lower left calf excised (later in 2014 reread by mskcc as melanoma in situ)
 
derm exams/6 mos
 
June 2013 small nodules by excision (we had no idea we should be looking for anything like this and thought it was a vericose vein)
 
July 2013 bump in groin. Biopsy shows it's melanoma.
 
Mid August 2013 lymphadenectomy (5/19 positive) and excision of lower leg nodules.
 
oct 2013 start yervoy and gets all 4 cycles.  Colon issues require heavy prednisone and 2 remicades.
 
radiation of lymph basin nov/dec
 
january 2014 tumor profile NRAS pos BRAF neg
 
march 2013 finally tapering of prednisone
 
April 2014 pet shows lesion in stomach (3.5 cm) and little nodule in groin and at lower left calf.
 
may 21 start anti pd1 and KIR trial. 
 
July 2014 stomach lesion 6cm/liver lesions detected
 
july 20 surgery to remove stomach lesion
 
aug 20 start mek162/cdk4 trial liver lesions have shown progression since july
 
todays scans: liver lesions reduced by 30 percent
 
 

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uccio2014's picture
Replies 3
Last reply 10/24/2014 - 10:19am

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 12
Last reply 10/24/2014 - 10:09am

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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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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