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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davekarrie's picture
Replies 8
Last reply 3/2/2016 - 8:37pm

Hello all warriors and caregivers, I have been on Taf/mek since November and it worked great to shrink my lung/abdomen tumors and my neck vertebrae tumor.  We added Keytruda in about 6 weeks ago and my last scan a few weeks ago shows the lung tumors are growing and my abdomen tumor is growing, it grew nearly 2cm to 3.3cm.  My oncologists say the Keytruda could be swelling the tumors, but my question is how much? Has anyone that has been on Keytruda seen swelling of tumors then regression? If so how much?  We will be scanning the end of March after our trip to Orlando through the Jack and Jill foundation for late stage cancer ( a great resource for those with young kids that can take a trip if selected).  If the scans continue with progression we are onto the Opdivo/yervoy combo.

Thanks for any advice help and never give up!

Dave

Live life to the fullest and enjoy each day! #noonefightsalone

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maxresultsbc's picture
Replies 6
Last reply 3/4/2016 - 11:11am

I have been very fortunate thus far I believe with my treatment. I am 43 and was in good health lol. Diagnosed quickly with an aggressive Stage 4 Melanoma that spread from my rectum to my pelvis and my liver. I have completed 3 rounds of the opdivo/yervoy combo and must within each 3 week period only a few bad days each time. With that said, the last 2 weks itching has reared its ugly head and then some. I started off trying cooler shower fragrance free soap. Then added benadry, then dr prescribed periactin, and has since switched my to vistaril. Nothing seems to slow this itch monster down. Anyone with any helpful advice on the matter would greatly be appreciated. Thank you in advance, your fellow cancer destroyer!!

 

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Polymath's picture
Replies 13
Last reply 3/1/2016 - 1:36pm

Greetings fellow warriors,

Recent heartbreaking post by pookerpb, and others along with the lingering thoughts of inspirational fighter Artie, I can't get this question out of my mind.  When is enough, enough?  When do you finally say I am tired of being cut, pricked, biopsied, infused, drugged, radiated, and having your entire life revolve around Dr. appointments?  Don't get me wrong.  I'm not giving up anytime soon, but the frustration of going through treatment after treatment only to continue to get worse, does not give a person a lot of hope.  My geographic isolation costs my family tens of thousands of dollars a year in travel expenses to see a specialist.  When do you say the family financial considerations outweigh adding another few months, or maybe years to life? Compared to some on this board, I'm lucky, but that ever-present doubt, knowing its just a matter of time. Yes, perhaps the next treatment or clinical discovery will be the magic bullet, and that's what keeps you going, and at the same time you are always thinking, maybe not. Then there's the love of family, my goal since diagnosis was to just see my daughter graduate high school.  These things keep you fighting. Still, I remain curious as to how others are facing up to these most difficult questions?  I suppose pain management and overall quality of life probably drive much of the equation, and it is deeply personal. I know others must feel like I do, and I'm curious as to what you think.

Aloha, Gary

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lmhl's picture
Replies 5
Last reply 3/5/2016 - 7:24am

My husband passed away one year ago from melanoma-nodular-first noted midline on the bridge of his nose.  He had surgery, radiation for 6 weeks, the mandatory one dose of dacarbazine before he started ipi.  He completed 3 doses of ipi before he had a seizure and intracranial bleed (at that time we discovered the melanoma spread to his brain).  They stoped the ipi and did WBR.  He died 4 weeks later.  

My question-after he stopped the ipi, the melanoma could be seen rapidly superficially  spreading over his upper body (chest, shoulders, neck).  It changed daily to the point where it was mostly covered.  I have still been trying to make sense of this disease and can not find any information about this rapidly spreading melanoma.  Was it because the ipi was stopped?  Was it just an agressive melanoma?

The doctors waited 7 months before starting systemic treatment.  Would it have made a difference if he was treated sooner?

Thank you for your help.  There is so much knowledge shared on this forum.  I only wish I had found it sooner.

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/29/2016 - 3:42am
Replies by: Kim K, jennunicorn, Anonymous

I've recently been diagnosed, and my doctor said to let my blood relatives know as they are now at increased risk. My question is, how far out on the family tree do I go? I've told children, siblings and parents. Should I also tell my cousins?

I'll be seeing a surgeon this week, so I'll ask him as well, but thought I'd get some input here as well.

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pookerpb's picture
Replies 24
Last reply 3/6/2016 - 3:38pm

Hadn't given an update in a while. Just waneed to share our decision to have hospice come in. After 3 years different trials rhat worked initially and then have eventual disease progression, my husbands heroic struggle with this disease will come to an end. Ad a last ditch effort he was scheduled for IL2 3 weeks ago but due to disease progression was too sick just days before. After being home for 2 weeks now, we called hospice in and he no longer is limiting narcotics for pain in fear of addiction. He has pain relief and rest peacefully now. Jad several weeks to preparr and he even at a too young age of 45 has accepted was is to be. Please pray for his continued comfort and comfort for myself and our two young teen daughters who are struggling with this so much.

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sister of patient's picture
Replies 5
Last reply 3/1/2016 - 11:55pm

Hello. I want to say first that my heart goes out to all of you and I thank you, sincerely, for all the sharing you do - reading your advice and learning about your experiences is absolutely invaluable!!

I've joined as I am a caregiver right now to my sister - she's stage 4, metastatic - numerous organs and bones involved. Started the T/M combo two weeks ago and is experiencing phenomenal results in tumour reduction, however, they seem to be causing massive headaches, which leads to vomitting, which leads to having to stop for a full 24 hours. We haven't made it through this 2nd week without interruption - so, it's more like she's only had the drugs every 2nd day this week. Her doc wants her to stop every time she even has a fever but she's more than willing to weather the fevers - it's the headaches that we can't get under control.

Anyone else experiencing this? And, if so, how do you treat it? The thoughts of not taking the drugs cause her alot of anxiety because they are otherwise "kicking ass" against this horrid disease.

Also, we are in Ancaster, ON (Canada) and she's being treated at Juravinski Cancer Centre (in Hamilton). If there is anyone also undergoing similar treatment in this area, I'd be interested in hearing who may be the best specialist/oncologist she could possibly see.

Thank you so much for any response!!!

My best thoughts and wishes to all of you!!!

Barb

 

 

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Suzi's picture
Replies 16
Last reply 3/3/2016 - 7:33pm

February 2016 had surgery to remove melanoma from my shoulder, was thought to be .3 but came back 1.05. 2 weeks later had 2 lymph nodes removed, got a phone call tuesday saying there was 50 cells in the Sentinel lymph node and the second was clear. Said I had Micro Metastatic Melanoma. Waiting for My first oncologist appt on March 3rd.
My surgeon said he did not think I needed anymore surgery. So do you think I will have to have treatment?
This has all happened so fast, the spot showed up in December, my dermatologist thought it was basil cell and was shocked it came back as melanoma. They have been showing the picture around and no one would think it is.
Any advice would be appreciated.
thanks,
Suzi

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scots's picture
Replies 5
Last reply 2/29/2016 - 11:39am

I'm currently on a trial at Duke which I just started two weeks ago.  Went to MSKCC this past week and they offered two trials one of which is BVD-523.  Talking with the doctors they believe this trial and the trial I'm on at Duke are on the same footing. All three have decent results but in small numbers.  they did not push one over the other so I'm left to do some research and make a decsion.  They did say that a logical choice would be to give the current trial a chance and in six weeks(3 cycles) after CT scans,  if the current drugs were not working to come back to MSKCC and start the ERK trial.  The doctors were very helpful and knowledgeable. It was good to find that there were a couple more options avilable.   I 'm curious to find out if anyone else has heard of this trial or has started ths trial.  

Scot

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/27/2016 - 10:46am
Replies by: Bubbles

Quick review, 3b, NED coming on three years. Summing up 2015, hospitalized 7 days with massive cellulitis of breast, then acquired lymphadema, arm and truncal and frozen shoulder with three months of therapy. Since November it has become a constant anxiety with OMG your LFT are way off, CT scan negative, then OMG there is an 9mm node on your thyroid, ultrasound, but let's just watch it, and now OMG  2 tumors in your effected breast, mammograms, ultrasounds, biopsies. Path report sent out by MD for second opinion, finally get results two weeks after - NP says many atypical cells and come in to make appt for removal of entire biopsy site. OK. Next morning MD leaves message on machine at home " Just atypical, changing cells - Nothing to worry about, no need for surgery! I'm so frustrated, find something - nothing, find something - nothing. My mind and wallet are sick of it. Sorry for the vent. I'm dropping out from all medical care except my PCP, she can check my nodes as well as the three hour drive to have the melanoma guys feel the same areas.

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snoopyinoc's picture
Replies 15
Last reply 3/5/2016 - 7:22pm

My husband has stage IV melanoma.  Petscan showed mets in his liver, lower back, and shoulder. He had 4  combo infusion of nivolumab/ipimumab. His most current petscan showed NED. He now has to go every 2 weeks for infusion of nivolumab only. I'm writing about the side effects he has been experiencing. After the first infusion he had no side effects, after the second infusion he rashes, and after the third infusion he had rashes, severe headaches, lost of appetite, and severe fatigue. He was prescribed oral steriods which has helped with these symptoms. But recently he has noticed blood is his urine and will be seeing a urologist. We've read that long term use of oral steriods is not good for you so he has been trying to get off them. It has been almost 2 weeks since he stop taking the oral steriods. He feels constantly fatigue and does not seem to have an appetite today. Has anyone experience symptoms similiar to my husband?

Emi

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Jewel's picture
Replies 4
Last reply 3/1/2016 - 11:01pm

Hi there,

   My husband completed Yervoy in Jan 2015 with very mild side effects. Mild fatigue,

mild rash, and diarrhea that was easy to control. Lately he has been experiencing the mild

rashes and also had a bout with diarrhea. Has anyone else had delayed effects? The good

news is scans were done 2/16 and he remains NED. Thanks for any input.

Jewel

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Scooby123's picture
Replies 15
Last reply 3/1/2016 - 2:46pm

Hi guys, hope you are all doing as well has can be. 

Can you tell me if when you visit your hospital each time do they do blood test every time . 

Do you only have bloods checked if on treatment.

thanks

scooby123❤️

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Dear MPIP Community:

I wanted to make you aware of the MRF's 2016 Patient Symposia Series calendar. The schedule is below and more details on all of the events can be found here

  • March 4-6, 2016 – CURE OM Eyes on a Cure – Atlanta, GA
  • April 30, 2016 – Northside Hospital – Atlanta, GA
  • May 7, 2016 – The James/Ohio State University – Columbus, OH
  • May 14, 2016 – Seattle Cancer Care Alliance – Seattle, WA
  • May 16, 2016 – UNC-Chapel Hill – Chapel Hill, NC
  • May 20, 2016 – Abramson Cancer Center – Philadelphia, PA
  • May 21, 2016 – MD Anderson Cancer Center – Houston, TX
  • May 21, 2015 – Siteman Cancer Center/Wash U – St. Louis, MO
  • September 16-18, 2016 – Pediatric Summit – Charlotte, NC

We will also host an Immunotherapy in Melanoma Symposium on August 12-13, 2016 in New York City. This is a one-of-kind event specifically for melanoma patients (and their caregiver) who are using or have used some form of melanoma immunotherapy. The MRF will reimburse travel expenses up to $300 per person for two people in each party to attend. The hotel arrangements will also be taken care of. We have limited space and reservations will be made on a first come, first serve basis. To learn more or to register, please view, fill out and return the Event Registration & Travel Reimbursement Form

I hope to see you at an event near you this year!

If you have questions about any event, please let me know! I can be reached at education@melanoma.org or at 202-742-5945. 

Sincerely,

Shelby - MRF

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LibbyinVA's picture
Replies 4
Last reply 2/25/2016 - 3:42pm
Replies by: Shelby - MRF, LibbyinVA

Know a young woman recently diagnosed with ocular melanoma. Does anyone know if there is a doc at Univ of Virginia who specializes in this? Really need a quick reply on this so thanks in advance for your help!

I have melanoma but melanoma does not have me!

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