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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brandimhs's picture
Replies 7
Last reply 5/19/2014 - 1:35am

My 8 year old was diagnosed in December of 2012 with stage 3B melanoma. Has anyone else experienced melanoma in children?

Brandi (Ashtons Mom)

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My husband was diagnosed with stage 4 melanoma 2/27/2014 when his horrible back pain proved to be a tumor on his spine, with active cells in brain and lungs.  At 6 ft and 160 lbs, he has always been a health nut, eating right and daily trips to the gym.  After two separate week long hospital stays for pain management with concurrent radiation treatments he has dropped to 122 lbs.  With so little fat, the loss is muscle and he can walk only short distances with his walker.  Has anyone out there come back from a weight loss like his?  If so, please tell us how.

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Treesie's picture
Replies 10
Last reply 5/19/2014 - 4:35am

Hi, 

I am a first time poster!  My husband had his first Melanoma removed 8 years ago.  One on his back, below left breast and lower left abdomen.  Nothing else was ever done and margins were considered clear.  We have kept up with Dermatology appointments through the years and had no other instance of melanomas, just pre cancerous moles.  Back in February 2014 he was increasingly becoming short of breath.  An X-ray showed a Mass in his upper right lung and a CT Scan confirmed the tumor.  Infact, the whole upper right lobe was involved.  A PET scan was scheduled and showed 12 Brain leas ions, involvement of the Lymph nodes, Adrenal glands, gall bladder, lining of his stomach and an EGD showed his colon is fully involved as well as multiple subcutaneous melanomas all over his body.  He has gone through 10 rounds of whole brain radiation and lung radiation.  He has had to have a bronchoscopy done due to the lung tumor growing so fast they were afraid it would fully involve his whole right lung.  So therefore they froze some of the tumor to halt the growth before the radiation could start to shrink it.  He was told another Bronch would be necessary in another 30 days.  His oncologist was very optimistic and started him on Ipi.  Stating there had been 10 year survival rates with this.  I am concerned giving my husbands weakened state this is a little overly optimistic.  He has already had to have 3 blood transfusions as well.  He had his first Ipi treatment a week ago.   We were also told by his Doctor that patients develop a "spring" in their step by the third treatment, but this is also when side effects are likely to happen.  At this point my husbands life consists of Bedroom, and chair and Doctor appointments.

 

Sorry this is long but I was hoping to have some input on what I can expect good or bad.  Or, if anyone else has had this much involvement.  It's so hard to see him like this.  Prior to him going downhill he was a runner 3 days a week and now he can't even dress himself!

 

Thanks for letting vent and post!

Teresa

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SamC 23's picture
Replies 1
Last reply 5/19/2014 - 7:37am
Replies by: Fen

Tomorrow I have my consultation with my Thoracic surgeon. I'm interested yet nervous for what will be said to me... I've been keeping busy and try not to worry too much. No reason to get too worked up until the doctors know what exactly is on my lung.

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DUSTILANE's picture
Replies 4
Last reply 5/19/2014 - 8:21am
Replies by: DUSTILANE, Sandy11, Anonymous

My husband has finished his 4 Ippy treatmens.  The scan that were taken the first of the month showed there had been a small decrease in the tumor under his right arm.  Also the spots that had been seen on his lungs on the prior CT scan had decreased from 1 cm & .8 cem to .5 centimeter.

 

This is good news...however, I am not seeing any improvement otherwise in my husband.  He is still tired all the time, sleeps all the time, has no appetite, continues to lose weight and has lost interest in just about everything.  He doesn't want to go anywhere or do anything.

 

Has anyone else experienced this type issue?

 

Any suggestions or ideas?

 

We go back to MDA the 26th of May for the next set of CT scans and a MRI of the tumor under his arm to see if it can possibly be surgically removed now.

 

 

Dustilane

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Gene_S's picture
Replies 1
Last reply 5/19/2014 - 8:57am
Replies by: Anonymous

By a News Reporter-Staff News Editor at Cancer Weekly -- In a groundbreaking effort, 3,500 of the country's top high school students will build the world's largest wiki on melanoma research -- and work toward finding that needle in a haystack to cure melanoma (see also National Academy of Future Physicians and Medical Scientists).

The effort is led by www.SaveJordan.org ,which will use crowdsourcing to drive user-generated content related to melanoma cancer research to a wiki site. "The idea is to bypass mainstream medicine and medical research and compile fresh ideas," said Jordan Guernsey, the 29-year-old father of two and Stage IV cancer survivor who is the force behind SaveJordan. …

=====================================

http://www.highbeam.com/doc/1G1-367490442.html

 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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ray39's picture
Replies 6
Last reply 5/19/2014 - 10:12am
Replies by: ray39, Anonymous, Kim K

The more I read my path report the most questions I have, so here is the complete report:

 

Cooment:Lateral and deep edges are positive for neoplasm.  The histologicdifferetial diagnosis may include a compound dysplastic melanocytic nevus with severe atypia, however, an early melanoma (0.4 mm in depth) cannot be excluded in these sections.  Re excision is suggested in order to perform additional histologic analysis and ensure the prolifieration has been removed moved from the patient.

 

I had the wide excision Tuesday and been reading this over and over and l\lateral and deep edges being positive for neoplasm is freaking me out.  The doctor said this was a "soft call" of no melanoma but they they wanted to treat it like an early melanoma?

 

Thoughts??

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Short review:

husband 

July 2010 dysplastic nevi left calf

derm exams every 6 months

July 2013 bump lower left calf and enlarged left groin lymph node

August 2013 diagnosed stage 3c, groin lymphadenectomy 

October 2013 - December 2013 ipi Tx 4 cycles total (colitis treated with prednisone and 2 doses remicade)

Ringing in ears. brain MRI clear. February 2014

CT clear jan 2014

April 2014 PET show high SUVs calf , groin and stomach 

April 2014 Endoscopy with biopsy reveals 3.5 cm lesion in stomach that is melanoma

Meet with teams at mskcc and penn. Decide on BMS anti-pd1 and KIR trial.  To be begin this weds may 21st

My Question?

if husband fails trial, would he be eligible for expanded access MK3475? If you were ever on a Merck 3475 trial that would exclude you but would a BMS trial exclude you?

Lastly, when do you think the FDA will approved Anti pd 1?

 

thanks in advance. Anxious to get treatment moving but don't want to make the wrong move. 

 

 

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SamC 23's picture
Replies 8
Last reply 5/19/2014 - 10:14pm

Hello everyone,

I was diagnosed with Melanoma back in March 2011. Surgery was performed to remove it from my back along with a sentinel node from my right armpit.

I 've had two CT scans in two months. The first one indicated a nodule on the lower left lung measuring 15x11. Second scan showed it grew to 28x14. I'm a little nervous for what is about to happen in the next few weeks.... Thank you 

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ErikaHouston2's picture
Replies 4
Last reply 5/19/2014 - 11:45pm

I was just recently diagnosed with Crohn's disease. Curious if anyone else here has experience with both melanoma and crohn's or IBD? My melanoma was early (Stage I, .65MM), but the treatments for the Crohn's disease do concern me since they are all immune system suppressing (steroids, Humira, Remicade, etc). 

Some of you may recall MD Anderson running a bunch of tests as they were concerned that my two severe GI bleeds (hospitalized/transfused) were somehow melanoma related. While Crohn's is not a peach, I'll take this diagnosis over melanoma metastisis any day.  It was very nice to have MD Anderson tell me they wouldn't treat me for this :-).

My Crohn's GI specialist is aware of my melanoma history and the complications for treatment of the Crohn's. She has started me on a mild steroid - Entocort.

 

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hannahcopeland1's picture
Replies 33
Last reply 5/20/2014 - 9:11am

Has anyone taken the chemo temodar? I am specifically taking it via infusion for 5 days ( but I kno you can also take it orally) with a regular dose of ipi and 10 days of full brain radiation. Apparently temodar can get to the brain so they decided to add it to my treatment because of my situation. 

Recently they found leptomeningeal disease in my brain, so basically there is melanoma in the tissue surrounding and protecting my brain and spinal chord.hasnt gotten to the spinal fluid yet which is good, but they did find two small lesions on the bone of my lower lumbar spine :( it's pretty darn serious and I was kicked out of the PD-1 trial I was to start the next week.

So plan B is just trying to be aggressive, hense my agreement to do chemo. I thought I'd be able to skip that stuff, but you can't always get what you want. I've done 4 out on5 infusions so far and haven't noticed many changes, but I kno that side effects often take time to kick in.

i really dontknow what to expect and am not knowledgeable about chemo (temodar especially) and how to take care of myself while on it. My doctors have not been very informative on the subjuct. When they handed me a mask the other day just to walk outside I was very surprised and when I got to see my 2 year old niece 6felt scared to touch or to hold her.

will I lose my hair? When?

i feel ignorant, which I try to avoid when it comes to my health.

Anyone experienced this particular drug and want share some knowledge with me?

.

Thanks for listening

H

Hannah Copeland

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/20/2014 - 9:35am
Replies by: ecc26

Expanded Access Program With Nivolumab for Subjects With Histologically Confirmed Stage III (Unresectable) or Stage IV Melanoma Progressing Post Prior Systemic Treatment Containing an Anti_CTLA-4 Monoclonal Antibody

https://clinicaltrials.gov/ct2/show/NCT02142218

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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OzzieK's picture
Replies 11
Last reply 5/20/2014 - 2:48pm

This board has provided a wealth of information. THANK YOU to all of those that support and educate!

Very brief background: My dad had 4.9mm nodular diagnosed in January, WLE and complete axillary node dissection under left arm (8 of 48 with melanoma). He has had 2 local recurrences since, with the first one removed surgically. The second one is growing on the outside of his WLE scar (from 1st local recurrence) and he has a couple of very small mets in the tissue in the same general area. Organs are clean thus far.

His specialist doc (O'Day from Bevery Hills Cancer Center) started him on Yervoy on Friday and does not believe surgery is necessary/helpful at this time. He wants to see how the mets respond and then, depending on how things go, may continue with the full 4 doses of Yervoy or switch to PD1 expanded access.

My mom spoke with a general surgeon friend and he insists that the mets need to be removed if they can be. Dr. O'Day feels differently and wants us to trust his judgement. We do and understand his reasoning, but can't help but have some doubt about just leaving the mets there indefinitely and risking them growing and spreading further. After all, surgical removed is or used to be best practice right??

Anyone else have a similar experience? Could really used some insight.

Thank you in advance!

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