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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LynnLuc's picture
Replies 4
Last reply 3/5/2011 - 10:36pm

I have blood work at 745- see Dr Weber  around 8 and do the last regular cycle in my trial- tah dah I am now going on to my 12 month of Stage 4 melanoma NED...oh NED is my best buddy!

I get scans and apheresis next week  then I guess every 3 months I will get scans, blood work and booster IV of  Anti PD-1 for 2 years if I remain NED.

wow...I also returned to work and nearing my 3rd week -it is still so exhausting but hoping as I get farther awhile from the trial meds the less tired I will be...

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

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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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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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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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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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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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mayeast's picture
Replies 2
Last reply 2/28/2011 - 10:07pm
Replies by: mayeast, MichaelFL

I have been waiting 2 weeks for results. Is this normal? I am anxious to start a clincical trial because I am now stage 4 with METs. Thanks.

Stay in the moment.

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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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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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RMcLegal's picture
Replies 5
Last reply 3/11/2011 - 7:55am
Replies by: RMcLegal, ShariC, Anonymous

I underwent biochemotherapy treatments at the University of Colorado Cancer Center in 2003, after receiving a Stage IIIc diagnosis (14 malignant nodes).  Today, I'm still above ground and healthy, showing no evident disease.  I've blogged about the lighter side of the journey at  Any other biochemo veterans out there?  Please share your stories.  Best wishes.  Rich McDonald

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Riluzole is drug that is used to treat ALS (Lou Gehrig's disease) and is now showing promise in treating melanoma.

For info on a phase 1 trial see:



I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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Hey All

Just wondering if anyone out there who is on a BRAF trial has any experience with bone mets and how the pain levels may have changed whilst on the trial? Craig has just started about 2 weeks ago, for a met in his rib and one in his abdomen. I know its early days, but he thinks the rib one may be feeling a bit more sore, so we were just wondering what to make of this and if anyone else has had similar experiences?


Lisa - Aust

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emilypen's picture
Replies 1
Last reply 2/28/2011 - 11:35am
Replies by: King

Hi All,

So my husband had been responding really well to a combo study of Mek & pI3k inhibitors but after being taken off the drugs for 3 weeks to allow a rash to subside the tumour in his back has aggressively been growing and even being back on the drugs for 3 weeks has had no effect.

After an MRI on Friday they docs have determined he needs immeadiate surgery to stop the tumour from compromising his spinal cord. And most likely radiation. After that on to a new trial....

so onwards from here.....


Any advice appreciated.



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TLR's picture
Replies 6
Last reply 2/28/2011 - 5:51pm
Replies by: TLR, Joan C, Anonymous, lhaley

I was diagnosed with stage 1 one year ago (site was right back). Had wide excision, negative SN. Now ultrasound is showing enlarged lymph node in my left neck. Wouldn't this be an unlikely area considering my original location and stage? The doctor has me scheduled for a ct scan on Thursday.

Any insight would be appreciated.



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NeilG's picture
Replies 3
Last reply 2/28/2011 - 2:10pm
Replies by: MichaelFL, Becky, Anonymous

I am about to start external radiation on my back for 4 weeks does anyone know the time frame of safe conception after this treatment?  My doctor has said to wait 2 months after treatment but i have also heard 1 year is appropriate.

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