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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BLL in Tampa's picture
Replies 9
Last reply 3/4/2011 - 12:30am

My husband was dx w/Stage IIIC 12/2010.  I'm sitting here looking over the Pathology/Review Consultation Report received from Moffitt and it says:  3/3/06 Left mid back excision (4.8cm): malignant melanoma, Clark level III, 0.50mm in depth arising in association with the pre-existing melanocytic  nevus, completly excised.

11/18/2010 Axillary mass, left needle biopsy:  Metastatic  poorly differentiated malignancy, consistent with metastatic melanoma.(see note)  Note: Histological sections of the needle biopsy from the left axillary mass show tumoral cells with an epithelioid appearance, centrally placed hyperchromatic nuclei, indistinct nucleoli, and variable amounts of dusky cytoplasm.  Immunohistochemical stains were performed, which showed tumoral cells to be positive for S-100, but negative for LCA, cytokeratin, and MART-1

12/1/2010   Lymph Node, Left Axillary, Dissection:  Metastatic Melanoma in 2 of 16 lymph nodes (2/16), largest metastatic focus measures 3.3cm in greatest dimension involving greater than 90% of the lymph node area, subcapslar and intraparenchymal in location, extracapsular extension identified.

Three options given; 1.  Follow with close observation.  2. clinical trial ipi vs. placebo. & 3. interferon.   

My husband has polycystic kidney & liver disease and his insurance does not cover "Clinical Trial"

As of 12/30/2010 Pet/CT scan NED!!! 

What do we do next.......

Lee

One day at a time.....

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KRob's picture
Replies 1
Last reply 3/3/2011 - 11:34pm
Replies by: amberhulin

After reading the report on the study by the Wellcome Trust Sanger Institute on genome sequencing in melanoma, I was wondering if anyone on this board has been part of the study and had their genomes and melanoma mutations sequenced.

I know genome sequencing is expensive, but they article indicated that there is an ongoing effort to establish further studies of genome sequencing.

 

Thanks,

Karen

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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After 3 months I failed the IPI. Most of my tumors have grown alot and 8 new ones have arrived. For me... The IPI was like feeding melanoma candy that it loved.

Dr Weber told me I have a couple of months to live if I do nothing. He reccommended sending me to get  Carbotaxol this week in Moffit while I am waiting for the processing for an appointment to MD Anderson in 2, 3 or 4 weeks if I am lucky.

Does anyone know if the Carbotaxol treatment would cause a delay in getting any kind of trial 1 treatment. I have heard of so many things that cause delays with trials........I don't want to agree when I should disagree.

Please help.

Rocky (Stage IV LIver Mets)

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Jerry from Cape Cod's picture
Replies 18
Last reply 3/3/2011 - 9:11pm

Hello All,

I've been laying low for awhile, but thought it might be a time for an update.

I've just reached my 108th week of participation in the IPI "Brain" trial.  It's a bit overwhelming with all the knowledge I've gained about Melanoma since my "move up" to Stage IV in January of '09 to still be an active participant.

The MRI was consistent with the last done 3 months ago.  3 small "enhancing" lesions (too small to measure) in the brain. The docs are about ready to call them necrosis.  The remains of the radiated tumor in my C-spine is slowly shrinking away as my body disposes of the dead tissue.

The mets on the left adrenal and the small bowel disappeared along with the majority of lung mets over a year ago.

One pesky met in the left lower lobe obstructed a bronchial tube and caused the formation of a couple of small semi permanent pneumonias.  In the last month two bronchoscopes were done on the lobe.  The first, a flexible clearly showed the lesion in a very accessible location.  A week later a rigid tube scope was performed to attempt to remove the entire met.  Unfortunately there were some unforeseen difficulties and only about 2/3rds of the met could be harvested.  In addition the bronchial tube and lower lobe were "compromised" so the decision was made to remover the lower left lobe with a VATS procedure to be done in two weeks..

The bottom line is once the lung procedure is complete I should have no active disease.  HOLY S*iT BATMAN!!!!

The other good news is that I will remain in the IPI trial and continue on maintenance.

 

Jerry from Cape Cod

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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Ohdearjessica's picture
Replies 9
Last reply 3/3/2011 - 8:42pm

I can breathe again until the next scan!

 

I got a prescription for soma for my shoulder/neck pains. Has anyone tried this before? I am uninsured so I have to figure out how much it will cost me

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Ohdearjessica's picture
Replies 5
Last reply 3/3/2011 - 8:39pm

I guess I'm just looking for support.

I don't know my original path report by heart, but I was dx in may 2009. I was pregnant at the time so I had to wait 4 weeks to find out what stage I was. 12 days after I had my son I had the WLE and SNB. They found cancer in a node in my neck. Had 2nd surgery a month and a half later where they removed the rest of the nodes came back clear. After all was said and done I was stage 3.

I have had a scan since then and it was clear, but I've been in constant pain at the surgery site (left neck and shoulder). I've been taking ultram for it but the pain is making me paranoid. I guess it's just Pre-scan anxiety, but I'm really freaked out that they are going to find something on Thursday.
I have been very positive until this last week.

Any encouraging words, support, or your experiences are welcome and appreciated

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/3/2011 - 4:32pm
Replies by: Jenjen, Sherron, ShariC

Has anyone on this board thought or their dermatologist thought you had a blood blister when after a biopsy it turns it was actually nodular melanoma?

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Hi folks,

I didn't go, but I thought I would post the link the the Melanoma Conference that was held at UNC on 2/24/2011.  The first link is just photographs -- not much information:

http://unclineberger.org/news/2011/release02241/

The second link is to a powerpoint presentation on staging, which might be of use to some of you.

http://www.med.unc.edu/cme/events/third-annual-unc-conference-on-melanoma

Best wishes to everyone!

ellen

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RMcLegal's picture
Replies 2
Last reply 3/3/2011 - 10:11am
Replies by: RMcLegal, mom3girlsFL

I'm a very lucky seven-plus year survivor, healthy and NED, after a diagnosis of Stage IIIc melanoma in 2003.  I read the posts of much younger patients, so often with young kids, who are struggling with my diagnosis, or worse, and it just pisses me off that they have to face this trial.  (Excuse my language, please.)  My heart goes out to everyone who is struggling with this beastly disease.  I don't have a clue why I've been so fortunate and so many others have not.  So, all I can do is blog about the lighter side of my journey at www.hotelmelanoma.blogspot.com and hope it provides a few smiles and a bit of encouragement.  Best wishes to you all.

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ValJaneMB's picture
Replies 15
Last reply 3/3/2011 - 8:21am

Hi everyone, i am in Pittsburgh and just finished round 1 of IL-2 at UPMC. I am being treated by Dr. Kirkwood. Right now i look like the Michelin Tire man - with really bad acne. Day 3 into the treatment I developed all these white pustules (gross I know) all over my face, neck chest and shoulders. They then broke and began to bleed. Has any one experienced this? We are staying in town for two weeks before round 2 starts and I need to know if there is any way I can prepare my skin for the next round? All the staff at the hospital were great giving me benedryl, lotions, etc but not able to help me further. After the 2nd round is complete we will be flying back to Winnipeg Manitoba and I am not looking forward to flying in this condition. The fact that I gained 40 lbs of water weight that is slowly coming off doesn't help either. I am thinking of cabin pressure on the plane.

Are the symptoms during the rounds always the same? Hopefully not worse. By the way the IL-2 tip sheet posted by another of our forum members (sorry can't remember her name) was INVALUABLE. I would have been lost without it!

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carol b's picture
Replies 5
Last reply 3/2/2011 - 11:01am

well ill be back at vandy in the morning at 8:20 for round 2. im so dreading it. i still havent gotten rid of the itchies yet from round 1.any ways, im mostly out of it while im there so im sending u all a bunch of prayers at one time tonite. Take care all.

carol bellinger

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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heg50heg's picture
Replies 4
Last reply 3/2/2011 - 10:54am
Replies by: ShariC, Carver, Janner, washoegal

Hello , ater 3 and 1,2 weks post lymph node dissection under arm pit     i have swollen up spot the size of my fist. It feels pretty hard and I am gonna see my surgeon tomorrow. Has anyone else experienced this after surgery.

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raelynn's picture
Replies 1
Last reply 3/2/2011 - 9:14am
Replies by: NancyGM

Hi  -   My father is 81 and has had melanoma for 2 years. He has had a couple of surgeries, radiation, and interferon. His last scan showed a couple of new spots and the doctor wants him to take Temodar. He also has frontal lobe dementia. Does anybody know if Temodar will affect the dementia or make it worse? Our doctor seemed unsure.

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Hi,

My father is 81 and has had melanoma for 2 years. He has had a couple of surgeries, radiation, and interferon. His last scan showed a couple of new spots and the doctor wants him to take Temodar. He also has frontal lobe dementia. Does anybody know if Temodar will affect the dementia or make it worse? Our doctor seemed unsure.

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Shelly in Switzerland's picture
Replies 5
Last reply 3/1/2011 - 1:20pm

I am on cycle 13 of the Roche b-raf trial, receiving the b-raf drug.  I have been responding the whole time.  Recently I have been experiencing a sense of instability in my left leg as well as poor balance because of it.  When walk my left foot slaps down and I have been tripping often as if I am not picking up my feet enough.  My last scans still showed "response" to the b-raf inhibitor. 

Another side effect that has been bothering me is my arms, hands, and shoulders falling asleep when in any position that I try to sleep. the olnly way I can sleep is with sleeping aides.   My range of motion has been reduced drastically for someone who used to work-out a lot. s

Has anyone experienced similar side effects? 

Has anyone been on the "responding" list for b-raf and still developed brain mets?  My doctor seems to feel this is very unlikely but willing to do a brain MRI if I want one.

Thank you for your help.

Shelly in Switzerland, stage IV

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