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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Bob Hilley's picture
Replies 8
Last reply 3/9/2011 - 3:54pm

I'm new here in terms of posting but have checked the site off and on since I was first diagnosed in 2000.  I won't go into all the details because I have fairly specific issue that I would like help with.  My MM was in my left leg and when another showed up not so far away from the primary, I got to be part of an isolated limb perfusion clinical trial at MD Anderson.  That went well and I was NED for three more years with a couple of sub-q's and some sarcoid tissue over the next few years---but no organ involvement until recently.  The doctors did an endoscopy because of some gastric problems.  The visual showed masses of anomolous tissue while the biopsy confirmed melanoma.  I had a PET last week.  The PET radiologist says that the scan shows involvement of the duodenum.  My surgical oncologist's interpretation is that there is a 6x7-cm mass between my duodenum and liver with infiltration into both.  Because of the nerves and blood vessels in the area, he has declared it inoperable until it can be reduced with radiation. 

I met with two radiologists today.  One said that he wouldn't risk doing radiation because of the likelihood of damaging the liver.  The other wants to start radiation and chemo next Tuesday.  So some doctors say surgery is inoperable and others say radiation is too dangerous.

My interest is in getting additional opinions about these and other options--especially any experiences with surgeons who may not be so quick to declare a tumor inoperable.

Thanks.

Bob

 

 

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Jim M.'s picture
Replies 11
Last reply 3/5/2011 - 9:17pm

Hi everyone,

 This has been one of those weird rollercoaster weeks (2 weeks) for medical appts. First something suspicious appeared in the ileum, the end of the small intestine. Then I did the small bowel follow though. I drank the barium contrast and had x-rays of that area. Nothing appeared. It was completely normal and the radiology doc. showed and explained the x-rays to me. I thought maybe this would be satisfactory to Dr. Weber. Wrong! He said sometimes masses hide in the walls of the intestine and also hide due to the folds in the intestine. He mentioned intussuseption is possible. I read that's when one bowel slides into the other. Apparently the small bowel follow through isn't fool proof.

 The next step is a PET Scan which should give a difinitive answer. I'm scheduled for the scan this Wed. early in the morning. I'm glad Dr. Weber is being proactive. I got permission th discontinue Alendronate as the bloating, and abdominal pain are side effects of this drug.

 I 'd appreciate  your prayers. I will post when I know something.

 God Bless to all,

 Jim M.

 Stage 3C

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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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dawn dion's picture
Replies 14
Last reply 5/20/2011 - 10:03pm

After a verrrry long 10 weeks of PET scans, biopsies, CT's, MRI's, ECHO's, EKG's and many blood draws I am finally starting my new trial.  After having ipi fail me and testing positive for a gene change (much to the excitement of my Dr.  - still not sure how excited I am) I now start  the B-RAF/MEK combo.   Here's hoping that it works because I am really tired of being poked and prodded.    I swear I don't know how some of you stay sane! :)  I know why you do it - believe me I get it, but sometimes this process really pisses me off.  So I'm putting on my big girl undies and do what I have to do win this war!  

Now enough of my whining - Any input from anyone who is on the B-RAF/MEK - I would love to hear from you.   Many of you out there have posted amazing stories on this forum and might I say THANK YOU!   It really makes it easier to live in this world  when you know you are not the only one out there fighting the fight and surviving all the odds.  It's a impressive bunch.

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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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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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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Anonymous's picture
Anonymous
Replies 7
Last reply 3/4/2011 - 2:03pm
Replies by: Anonymous, KatyWI, Laurie from maine, DebbieH, lhaley

Hi Everyone,

 

I am new here so this is my first post. I am stage 3 & have had a few surgeries to remove recurrence oin my leg.

I am now facing another surgery on my thigh (3rd sugery at same area). The suregeon tells me the tumor has grown down into the muscle & he will have  cut muscle out to try to get clear margins.

I would appreciate any feedback from others who have had surgery that cut out muscle. What is the recovery period ?, any long term side effects of cutting muscle out.? Pain? etc.

Thank you for your time & any comments are sincerely appreciated.

Thanks,

Amy

 

 

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This is some new info about how melanomas often develop resistance to the B-RAF kinase inhibitor PLX4032:

http://www.nature.com/nature/journal/v468/n7326/full/nature09626.html

 

Frank

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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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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