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 11
Last reply 5/22/2015 - 5:46pm
Replies by: 273c, raeds, Bubbles, Linny, ecc26, Patina

So the short story is, hubby found a lump in his armpit which turned out to be melanoma.  So far he has had a PET/CT scan, seen dermatology and talked to a few different surgeons.  

The only tumors are the lymph node (lump) and a small (less than a cm) one by (not in) his liver.  I should also add he itches terribly and recently started getting patches of vitiligo.  So it seems his body is mounting an immune response on its own. 

Next week he is scheduled for opthomology (still looking for the primary site) and an MRI.  We will also likely end up at medical oncology.   The docs, mostly surgeons so far have all talked about removing the tumors and then maybe some "immunotherapy" or radiation after the surgery. 

I am trying to get up to speed on the various treatment options.  I've done the various internet searches and one doc did mention Yervoy.  It looks like Keytruda is better and has fewer side effects, any thought?

Are there treatments I should ask about?  Some that I should be wary of? 

 

Thanks

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Anonymous's picture
Replies 3
Last reply 5/18/2015 - 6:54pm
Replies by: Ed Williams, Bubbles, Anonymous

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Bubbles's picture
Replies 1
Last reply 5/17/2015 - 8:55am
Replies by: JoshF

This is not something I am pushing at all, but did come across the info and thought it might be worth investigating in patients who have already had several therapies and are still seeking an effective treatment.  I am not sure if patients who have been treated with anti-PD1 will be accepted, though patients are required to have had treatment with IL2, ipi, vemurafenib (if BRAF+) OR dacarbazine.  So...here's the links to the article, clinicaltrial.gov info, and my write up (as best as I can tell, anyway!!!):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/new-immunotherapy-trial-with-nbs20-for.html

Wishing you all my best.  Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Hello all. What a wonderful community this is. I wish I hadn't waited so long to register. I've only read a few threads, and I already feel encouraged by the stories of survival here. My melanoma story starts less than 3 weeks ago, but it's been such a long 2.5 weeks that it feels more like months.

I'm a 31-year-old male, and I was diagnosed with melanoma on my left calf on April 29th. My tumor was 1.6 mm thick, no ulceration, a mitotic rate of 1, and a Clark level of IV. My doc said I only had a 15% chance of spread to my sentinel lymph nodes. My wide local excision and sentinel lymph node biopsy was 3 days ago. Unfortunately, luck wasn't on my side, and my sentinel lymph node (inguinal) was positive for cancer. She only removed one node. Two lit up on the lymph node study, but the second was at a deeper lymph node basin.

In my node, it's only microscopic disease (she said about 0.5 mm), and there is no extracapsular extension. She thinks it's highly unlikely that it has spread to any of my other regional lymph nodes. However, and she warned me this was controversial, the standard of care will still be to do a complete dissection of my groin lymph nodes. Afterward, I'll probably be able to link up with a clinical trial (it's a research hospital) to boost my immune response against the cancer.

I'm a scientist myself, so I have been reading clinical studies, and I see how lymph node dissection doesn't improve survival at all. What have your experiences been? I'm wondering if I should try to skip the node dissection and go straight to the clinical trials. I am all about aggressive treatment, but it seems like the lymph node dissection has few positive benefits in my case (since I have no extracapsular extenstion) while greatly increasing the risk of surgical complications.

I know the standard of care is limited until research identifies a better solution, but does anyone know if the standard of care is changing at some places around the country?

Thanks and God bless!

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/16/2015 - 2:18pm

My wife of 25 years recently passed away from melanoma.  She went to her family doctor with a large new thick black lesion on her face.  He sent her to an Ear Nose and Throat (ENT) doctor to have it removed.  We waited for 3 months to get in to this appointment.  He removed it and 2 weeks later told us it was melanoma.  It took another month to get in to an oncologist. The oncologist referred us to another ENT who did a radical lymphectomy (positive for 13 lymph nodes).  At this point it was 6 months from the time she called for an appoinment from her family doctor until the day of surgery.  They waited two months to heal from surgery and decided to do 30 treatments of radiation, which made her so sick and lost almost 40lbs unable to eat due to mouth sores).  They started a Gtube to do feedings.  Now 10months from her initial appointment they decide to start one dose of dacarbazine then Vervoy x 3 doses.  Asked several times for a brain MRI but told they wouldn't do it if there were no symptoms.  She told them several times of numbness and tingling in her hands and I told the doctor that her personality was changing.  She died 2 weeks after the third Vervoy dose from a bleeding brain turmor-9 months from the time of diagnosis.  My question-we went to a melanoma specialist, why did they wait 6 months before they started systemic therapy on a metastatic melanoma?  Why did they do radiation first? I truly believe that there must have been a better way to manage her treatment.  In the effort of improving care for future people living with melanoma what could have been done different (aside from having a family doctor that made her wait for 3 months for a biopsy for something that clearly appeared like melanoma)?  Thanks everyone for your help.  It has been a fast and difficult ride.

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mike_nj's picture
Replies 5
Last reply 5/15/2015 - 10:56pm
Replies by: Janner, mike_nj, Anonymous, Debbieamccoy

Hi Janner

 

This is MIke from NJ.   Whn the chat was active, we used to both participate regularly.

 

I skipped my scan this year as being 3B out 10 years but plan on getting one in a few months or so.

 

Reson for post is that my sister Patty had a recent shave biopsy of a mole on her shoulder and it came back as mm  IN SITU

I had questions of the effect of the shave on the true assessment and I was wondering if my sister could call you to get your perspective.  She has an appointment tomorrow with a surgeon.

 

My email is mike.kelly@churchdwight.com if you can send me your contact info.

 

Regards,

 

Mike Kelly

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/14/2015 - 1:01pm
Replies by: Janner

Is hair growth a sign of a healthy mole or at least one where cancerous cells have not yet invaded deeply thus killing the ability for the hair to grow?  I've read differing things online and thought I'd ask the experts!

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Anonymous's picture
Anonymous
Replies 14
Last reply 5/20/2015 - 9:03pm
Replies by: Mhardes, Janner, Anonymous

Good day,  I have had a rough couple weeks and it was capped off today - just looking for some thoughts. I have had two basil cells removed in the last few years.  I usually go once a year to get checked out. During my lasycheckup (1 1/2 yrs ago) I had mr dermatologist check a mark on the back of my leg. Hindsight, I should have gotten a biopsy.  He said it was fine and I forgot about it.  About 2 weeks ago, I decided to go and get checked ( my wife had wanted to get checked out and it reminded me).  The doctor saw the mark on my leg and said that it had changed enough to get a sample.  He said he didn't think it was melanoma..he had never said that so I was a little concerned.  I waited a few days and it was driving me crazy so I made an aapointment to speak to him.  He basically said don't worry ,,sure it's nothing and you'll co e in, we'll get it out and move on.  Now today,,got the call.results are in but ..he wants to send the sample to Harvard for a second opinion before talking to me....another week.  I said ok..but after three more calls to the doctors office, I said that I would like the doctor to cover the first test results..he can still get a second,,,but the first test must show something.  She said that he was not comfortablele covering without a second opinion.  Again, I asked for my records ..I am going tomorrow to meet with him.  I asked the nurse..was it stage 5... She said they didn't know what it was but that it wasn't stage 5,4 or maybe not even three.  She also said I caught it early and that it wasn't in lymp nodes or had matacised..(how would she know)...I a very concerned and I am going tomorrow.  Any thoughts..I always go worst case scenario...thanks

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Anonymous's picture
Replies 6
Last reply 5/19/2015 - 8:48am
Replies by: Anonymous, ncdaniel, Thandster

I was diagnosed with stage 2 March 2015. 

I had a breslow depth of 2.9, clarks level IV, and a mitoitc index of 12. I don't know if anything else is important from the path reports.

My treatment was a sentinal node biopsy, followed by a wide local excison. (University of Michigan Cancer Center.)

The two nodes removed came back negative and my margins are clear.

My surgon says that is all I need for treatment. 

I am asking for comments or insight if this is ok or should I pursure other treament or scans.

Feeling relieved but also still a bit unsettled.

 

Thanks!!

 

Ken

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/13/2015 - 12:07pm
Replies by: mary1233, arthurjedi007

Not to simplify too much but without any know mutations, what current treatment is showing the best numbers for mucosal melanoma?  

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/13/2015 - 2:03pm
Replies by: Raoulduke212, Janner, Anonymous

I had a odd looking mole biopsied.  I only spoke to the nurse, but she told me the pathology came back as "Severely Atypical Lentiginous Junctional Melanocytic Proliferation."  She says it's not cancer but when I google this term, I get nothing but melanoma articles.  Can someone explain this to me?

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1derdog's picture
Replies 3
Last reply 5/12/2015 - 9:19pm
Replies by: 1derdog, arthurjedi007

My husband was told that he has a secondary melanoma in his pancreas (uncinate process) that is not respectable due to its close proximity to the main vein in that area. His doctor wants him to start on Yervoy and if that doesn't work then he will place him on Keytruda (pd1).  My questions are:

how effective is Yervoy for cancer on the pancreas?

because my husband's cancer is aggressive - can we insist on him being placed on Keytruda right away instead of waiting to see if Yervoy works first?

any other suggestions would be very much welcomed.  

Thank you

wife (caregiver)

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Anonymous's picture
Anonymous
Replies 14
Last reply 5/19/2015 - 9:03pm

My mother was recently diagnosed with Stage III melanoma, primary site unknown. She had a small mass in her right parotid that her ENT orginally though was benign. During her surgery on April 2, 2015 the doctor was concerned with the appearance of the mass and a frozen biospy was completed. Orginal diagnosis was non-oat cell Small Cell Carcinoma. It was two weeks later and path results going to Mayo that they confirmed she had Melanoma. Her orignal surgery was converted into a total parotidectomy and level I and IIb dissection. PET/CT scans just confirmed she still has three localized lymph nodes positive with melanoma and MRI was clear. We are seeing the melanoma specialist and he has suggested my mother participate in a clinical trial where she will be started on High dose interferon for four week five days per week which then moves to the standard three SQ injections per week with Ipi every three weeks two infusions. The trial is around 3 or 10 mg doses of ipi, and she would then receive the radical neck dissection on week six. Afterward she would go into a maintenance phase of the interferon with SQ injections and the Ipi would eventually be given every 12 weeks for the entire study for approx. one year.

 

I am concerned about the delay in the radical neck dissection for six weeks and knowing all the side effects with the study.

 

Is there anyone else who is going through this study right now, or any one have additional insight?

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Gordknight's picture
Replies 12
Last reply 5/13/2015 - 10:27am

Hi everyone.  I am in a really shitty spot right now.  If you read my earlier posts I had a 0.22 stage 1a melanoma removed from my neck back in October.  I had the WLE done in November and had my regular checkup a few weeks ago and everything was said to be healing nicely.  However, even one month after the WLE procedure there was one spot on my scar that looked darker than the rest.  Occaisionally some dead skin would be on that spot that I could easily remove.  

Last night however another piece was there, I pulled it off and it started bleeding.  The spot which almost seems under the skin and not on top of it is darker, almost like a black mole.  I immediately called my derm and he is seeing me Wednesday morning.  I have also just accepted a job for the summer that I leave for on monday morning after my appointment, but if this is my cancer returning I dont know how keeping this job is going to be possible with all the surgery I am sure I will require.

I am just confused.  I had clear margins  Is is possible that a melanoma that took 3 years to turn into a 1a to come back and grow to this size this fast?  I am just at a loss and feel completely drained and beaten here.  Any advice or help or experience would be most helpful.  Thank you.

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/11/2015 - 11:32am
Replies by: Anonymous, Janner, ldub, tgeorge1

Does a visibly growing/evolving dysplastic nevus (noticeable but not significant, radial growth - not raised, not bleeding or crusty just expanding in size ever so slightly) always mean it's likely turned to a melanoma?  I have a biopsy scheduled for this week and am very nervous. Do more than not that are changing confirm to be melanoma?

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