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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I received a diagonosis of Vulvar Mucosal Melanoma October 2016. After two surgeries to excise the area, my Staging is IIB3. All cancer cells have been removed, no lymph node involvement and no other tumors present.  I have seen doctors at Mayo Clinic and locally. With a 50-50 chance of the melanoma coming back, my options are 1) Do nothing. 2) Cisplatin with Temozdomide 3) Ipilimumab.  First option is out of the question. I want to be just as aggressive as the cancer is.  The two remaining treatments; the Chemo (Cisplatin) is backed up with the ONE study done with Stage II and Stage III MM patients.  This is the ONLY study done exclusively on mucosal melanoma. The results were very favorable.  The second treatment, Ipilimumab (according to my research) is for 'advanced' mucosal melanoma or skin cancer.  I do not have skin cancer...that would have been an awkward sunbathing position!  Both treatments are promising.  I feel I have one chance to get this right and typically I can't pick the winner out of a one horse race. I've read several threads here, and I hear a lot about Ipillimumab (Yervoy) but most are concerning more advanced staging or skin cancer.  I would like to hear if someone has done a head to head comparison on the two treatment options...or opinions or arguments for or against Cisplatin w/Temozdomide and/or Ipilimumab for Stage 2B3 and wanting to stay 2B3. God Bless and Thank You!

Robin

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Hello everyone,

In Canada, we are currently awaiting funding of the combination therapy for Nivo & Ipi (Opdivo and Keytruda). We are seeking patients who have been on thi trial/s involving to participate in a short survey to better understand your experience.  This survey is confidential and no information will be shared on an individual basis.  We hope that you will help us and fellow patients through your participation - our deadline for participation is December 13th.  Thanks again to all from the Melanoma Network of Canada (1-877-560-8035 x 101 for further information).  Wishing all of you a healthy and happy year ahead.

for more information or to take the survey please visit

www.melanomanetwork.ca/mncsurvey

or call 1-877-560-8035 x 101

 

 

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Mat's picture
Replies 1
Last reply 12/5/2016 - 11:04am
Replies by: Polymath

In light of some recent posts and the NYT article on diabetes/side effects, I'm curious--for those on ipi/nivo, have you stopped or taken a break from nivo?  I started the combo in January 2016 (and am very grateful for stable results since), so I've probably had ~20 infusions of nivo.  I've also been on prednisone (20 mg/day) for most of the time for varying side effects (all relatively manageable and minor).  I've started the conversation with my onc on taking a break for a month or so (not necessarily stopping) assuming continuing stability at next scans.  No final decision yet and am curious about others actual experience with ipi/nivo.  (I've seen others' post over time on nivo or Keytruda alone.)  Thanks.

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My Mom's doctor said during a recent appointment that they are seeing patients who have been taking immunotherapy drugs begin to get side effects far into the treatment and they are having to take them off the drug(s). - No one had had more than 24 in his practice. - My Mom has had 22 infusions of Keytruda and other than some small red bumps, one large red round spot on her shoulder and vitiligo she has not any other issues.

We have been told to watch out for joint or stomach pain and flu like symptoms.  My Mom will be having a test the next time she goes to the doctor on her heart and it looks like we should just check her blood sugar too.  - We should all be on the look out for these rare side effects as our loved ones continue to take these drugs...

Immune System, Unleashed by Cancer Therapies, Can Attack Organs

Lifesaving Cancer Drugs May in Rare Cases Threaten the Heart

.

 

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I'm fortunately a stage 1a - spitz melanoma pt  but since I was diagnosed 4 months ago (which as a 33yrs old newly wed I never thought I had to deal with, at this stage/age of my life), I keep my reading updated about melanoma and also have asked my family this year to forego Christmas gifts for me and instead donate to Melanoma research. I used to get my Christmas gifts as donations to "The Smile Train" foundation, but this year I switched. I encourage everyone to try it, for me it makes my Christmas gifts so much more meaningful than let's say a tablet or a Sephora gift card :) 

Article below is a good, albeit scary and sad, read for the latest stage IV immuno-therapies. 

Always sending thoughts and positive energy to everyone on this board and beyond that is fighting melanoma.

 

Immune System, Unleashed by Cancer Therapies, Can Attack Organs - The New York Times

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Has anyone found large spots after an recent infusion?  My Mom just had her 22nd Keytruda infusion and it so happens that a large round spot appeared after the infusion on her shoulder. The doctors never found her primary and her past PET scans never lit up here. I am wondering if anyone else ever had anything like this happen.  - A biopsy has been done.

Everything else is great with my Mom and the last sign of anything "new" was brain met (August of 2015) related to a reoccurrence from a brain met that was treated in 2013.

 

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Anonymous's picture
Anonymous
Replies 0

What does it mean when pathology says no evidence of dermal involvement on these stains?

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/3/2016 - 8:07pm
Replies by: Anonymous, Janner

I had an excision with a 3mm margin. Dermatologist feels I should have another excision with a 1 cm margin. Head and neck surgeons disagree and feel this is adequate even though 1 cm is recommended. If head and neck surgeon does it, he wants to do it right away but I read that it can be done in 3 month time frame.  

 

BBR

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JoshF's picture
Replies 9
Last reply 12/5/2016 - 3:14pm

So LDH went up more and now platelets were elevated. I think high end of range is 450,000 and mine was 488,000. I looked on this forum and everything is low platelet counts...anyone know anything about elevated platelet counts?

Josh

Let's work for better treatments....for a cure!!!!

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Question, my husband has brain lessions bleed he is on a antidepressant and was to start vemurafenib and cobimetinib with his keytruda. Now pharmacy says interactions with vemurafenib and cobimetinib so doctor wants him to wean off antidepressant before starting the combo. I have read antidepressants can cause brain bleed . Wondering if anyone has heard of this . Thanks

Cathy Jewell

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Anonymous's picture
Anonymous
Replies 0

If you have melanoma intransit. Do you need to do a SLNB again? My pet/ct was clear.

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jvictoria's picture
Replies 4
Last reply 12/4/2016 - 2:15pm
Replies by: jvictoria, JoshF, _Paul_

Hi everyone,

Currently on IPI and Pembro, just took my second dose this week. This all comes from progression to my lungs and liver. In addition, last week three lymph nodes swelled up, right elbow, shoulder and on my rib. Doctor said it's not unusual to see progression before their is regression... so here we are praying for regression.

So, reaching out to you guys to see if anyone has any exposure to TIL Therapy; hoping this may be an option.

Thanks,

Juan

Juan

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Scooby123's picture
Replies 3
Last reply 12/2/2016 - 10:42am

Hi all,

can you explain what is high tumour burden. Not sure if it is how big the tumours are, or how many you have or how many organs it has spread too. 

Hope you all are doing as well has can be.

scooby 

 

 

 

 

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MichelleRHG's picture
Replies 7
Last reply 12/5/2016 - 9:35am
Replies by: MichelleRHG, brewgirl68, Fen, Anonymous, jennunicorn

Hi, 

7 1/2 years ago I had a Stage 1b melanoma on my thigh which was removed with a negative sentinal node biopsy. In October I found an enlarged lymph node in my groin, same leg. Needle aspiration confirmed melanoma and I had the 10 nodes removed from there 3 weeks ago. The other 9 are apparently clear (waiting on 2nd pathology lab to double check) Brain mri and PET scans all fine.

Question 1: My local onc. insists this is stage 4 because it is a recurrence. I just returned from MDAnderson and both onc. there say 3b (regional recurrence). Local guy says yes, if it were the initial lesion with this positive node it would be 3b, but since it has metasticized it is automatically 4. Which is it? 

Question 2: If it is 3b, and since I have no cancer at this time, MDA recommended Yervoy (what is FDA approved for this stage) or a clinical trial where I would get either Yervoy or Keytruda assigned to me. I would find out at the start which one it is. I could do the Yervoy in my town but would have to travel 2 hours for the trial. If I draw Yervoy, would it make sense to drop out and just have the same tx in my hometown? What do you all think about these 2 options? I want Keytruda, right? I homeschool my 10 year old with Down syndrome so pretty concerned about side effects getting me down and out but more concerned about recurrence and death!!

Question 3: I am scared to death and the anxiety about this is taking over my life. All 3 oncs say 50/50 chance of recurrence within 5 years with no further treatment. How do you all get past the fear? I keep telling myself "Today you do not have cancer"

Any and all advice and ENCOURAGEMENT AND HOPE is welcome! Thanks in advance.

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