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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vickirs's picture
Replies 41
Last reply 5/21/2012 - 6:35pm

Dr Rene Gonzalez has opened thie study at univ of colorado.  After failing many trials including compasionate us ipi, i am finally responding to something.  2 weeks ago i was told i had about 2 months to live.  I started this trial then instead of hospice and there is already a noticable improvement.  I lost 13 pounds in fluid wait above my liver and down my right leg.  I started readintg again after months of not being able to.  my upper abdonan no loner feels 10 months pregnat.  when dr gonzalez felt aound today he can tell there is definately shrinkage going on.  It doesn't matter if you are BRAF or not.  I am not BRAF.  And it is as simple as taking pills once a day. Uf any buddy else is on this trial let me know.  up unti know there have only been about 50 people on this study but with such great results they are expanding the the trial.   This definately brings new hope to me.

melanoma is a word...not a sentence

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Amy K's picture
Replies 8
Last reply 3/5/2011 - 11:16am

Hi Everyone, 

First of all, let me say thank you to you all for the posts and comments on this board!  It has been a wonderful support to me as we've dealt with this awful disease.  It is nice to hear from others going through similar things.  Sorry we all have to meet on this page though.  :)

My husband was stage 3 in 2002 (we found this out a couple weeks after we got engaged), did interferon high dose 6 weeks, low dose 11 months.  We did great for 8 years. We have 3 young, wonderful children. 3 months after our third was born, BOOM this cancer came back and we're now at stage 4.  We were shocked it came back 8 years later.  (We had thought we had made it past 5 years, and thought  there was a low chance it would come back, and we weren't in that low percentile.)  It came back last August and we entered the Roche BRAF inhibitor  BRIM trial.  We were disappointed we got  the chemo instead of the pill, but after 6 months of dacarbazine, the tumors are gone (all 35)!  We are now so happy that we are NED.   

There's one problem my husband is still dealing with.  I wondered if anyone had anything similar or knew of anyone like this.  So, in July of last year he noticed his lymph nodes enlgarged and his eye was bothering him.  The lymph nodes were melanoma and we have done lots of scans of his eye and no cancer is shown in the eye.  However, he's had 2 eye surgeries to fix the glaucoma and then recently to reattach the retina.  His eye is not doing well.  We have heard of auto-immune response to chemo or IL2, but his eye started going bad before we were on any treatments.  Just recently they tested the vitreous (the fluid) of the eye for cancer and came back negative!  Great news.  But, we're still tyring to figure out what is wrong with the eye.  We've gone to several doctors and no one knows the cause and his eye is causing him lots of pain and annonyance.   A couple doctors are suggesting enucleating (removing) the eye.  We're trying to wait and not do that right now.  Any thoughts?

Another question I had.  So, we are so happy the cancer is gone.  Dacarbazine was awful and my tough husband endured that for 6 months even though he kept saying I don't want to do that again after/during each cycle.  We are so glad to be done with chemo.  We know chemo isn't a cure for melanoma.  The doctors expect it to come back but it's just a matter of when.  The doctor said it could be 2 months, and he thought really hard of a case where it didn't come back for 18 months.  We are thrilled chemo has worked so well for us and wondering if any of you have had experiences to how long it can keep the tumors from coming back.  

We are still on the BRIM trial and we can get the BRAF inhibitor drug if (when) it comes back.  We also wonder if IPI would be a better choice.  Although if we did IPI next we couldn't get back on the trial for BRAF inhibitor.  So, I guess BRAF should be first while we can get it and then do IPI.  Let me know if that sounds right to all of you who have dealt with IPI or the Roche drug more than us.  

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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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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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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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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 Thorocotomy...now "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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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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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 www.hotelmelanoma.blogspot.com.  Any other biochemo veterans out there?  Please share your stories.  Best wishes.  Rich McDonald

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