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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kpcollins31's picture
Replies 2
Last reply 10/11/2012 - 6:18pm
Replies by: JerryfromFauq, dellriol

I had surgery on 9/25 to remove an "in-transit" lymph node in my upper left arm that came back positive for melanoma after the biopsy. They also performed another SNLB - took two additional nodes in my upper arm and one more in the traditional armpit location. Surgery was done by Dr. John Stewart at Wake Forest Baptist Health cancer center -- seems like a great doctor - very confident, very personal.

Just had my follow-up this morning - PET scan clear, aside from the one bad node, the others came back negative so this is the best news I could have.

Doctor originally suggested I consider the Polynoma vaccine trial (POL 103A), but apparently I cannot qualify because my primary was greater than stage 2A. Since I am not interested in the interferon vs ipi trial, we are doing the wait and see approach with a 3 month follow-up.

For those scared of the lymph node biopsy, do not be - 11 days after my surgery, I was pitching batting practice for my son with the same arm I had surgery on. Recovery is not bad at all. 

I am ready to beat the beast.

Kevin

   

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dellriol's picture
Replies 6
Last reply 10/11/2012 - 12:57am

Went in today for my checkup after 6 months on Z.  So far my brain tumor is stable to slightly decreased, but my lung tumors are way down. CAT scan noted 6  nodules before, ranging from 4mm to 1.2 cm. Now they find 4 nodules and the biggest is 5 mm.  They have also noted lymphadenopathy in the past and say NONE now.  I'm taking 6 pills a day, and since they started me on 10 mg Prednisone to go with it, my side effects are minimal.   Just had to share my news.

This ain't no hill for a stepper.

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I officially start my 14th month on Zelboraf.Thank God that I am B-raf +.This drug is a lifesaver for me and so many more.Dealing with the side effects for me has been tolerable.They do sort of come and go as I contiue with"Z".I aim to be a glimmer of hope to many stage 4 fighters.I have been following the posts of Dick who is going on 31 months of "Z" and still counting.Hang in there.They will find a cure.Meanwhie never forget to thank God and live. Beat the Beast.  Al

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Rik's picture
Replies 12
Last reply 10/10/2012 - 9:35am
Replies by: Rik, POW, lhaley, kellygrl

Dear all,

Four years ago a melanoma was found on the back of my brother. Fortunately, they can be surgically remove and no metastases were found.

My brother is now 31 years old and father of a beautiful daughter of one year.

Unfortunately, in April of this year, they found a metastasis. This time in his head. Fortunately, they could again surgically remove the tumor. The tumor was located on the outside of his brains. Again there were no metastases found after the scans. 

Unfortunately, it ran all wrong from than. My brother showed a bacterial infection to have walked in the operation; meningitis. He went into a coma by the meningitis. Fortunately he awoke, but he had some damages in his brains and physical he was bad at that moment too. He had to rehabilitate. He was working on that for the last two months in the rehabilitioncentre. 

The result of a routine MRI came last Friday, this revealed that again metastases were found in his head, this time at 3 places. We all did not expected this. This week we had many conversations in the hospital, they can not surgically remove the tumor because they are in the brains. Radiation is dangerous and not recommended by the neurologist. The last remaining option is medication, Zelboraf. The hospital, here in the Netherlands, is not very keen on it. They indicate that the probability that Zelboraf works on brain tumors is 40 percent and find the side for my brother too dangerous. Zelboraf in the Netherlands is only recently officially approved drug, but data regarding Zelboraf and the effect on brain tumors is very limited the oncologist told us. We are now busy deepen what Zelboraf can do for my brother and whether this without many nasty side effects. If Zelboraf can extend my brothers life with months (they diagnosed him to life for 6 - 9 months) this would be so beautiful. His daughter is 1 year old, and every month they can life together (in a reasonable way) together is so important for all of us.

Please let me know if anyone has experience with Zelboraf with a brain tumor and what the effects have been. My brother is indeed in a bad condition by the complications of the previous operation. We want to exclude that Zelboraf damages his life even more, without the chance that Zelboraf works for him is very large.

Thanks in advance! All comments are welcome. This is so important for my brother! 

Kind regards,
Rik

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Here is a link to the results of the HyperAcute Melanoma Vaccine with PEG-Intron trial at Ochsner Medical Center New Orleans. I completed twelve rounds of high dose interferon with vaccine in September of 2009. 

http://www.advocatehealth.com/documents/clinicalresearch/poster/2012researchposter006.pdf

I was Stage IIIB with a primary on my upper back. 2.5mm ulcerated nodular amelanotic, Level IV.  Had the usual wide excision in January 2009 and Sentinel Lymph Node Mapping. Unfortunately the Lymph drainage was traced to both sides of my neck. Sample nodes were removed from both sides in March 09 and a microcell found on the left side of my neck. A neck dissection in May 09 removed 26 additional nodes with no additional cancer found. I started the HyperAcute vaccine with Interferon in Jul 09.

The trial went well with the normal sickness from the mega doses of interferon but no issues from the vaccine.

I have been NED since 2009. The results show 11 of the 25 Stage III's and IV's still here. I developed vitiligo (a slight case on my arms) which apparently was a good sign.

I don't know if they are going to repeat the trial, or if anyone who frequents this forum has heard anything about it, but I wanted to share the published results that I found. For those of us who stay on top of all the treatment possibilities, it's an interesting read of using our own immune system to reject introduced melanoma cells marked or spliced with mouse genes.

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Ronskidtexx's picture
Replies 7
Last reply 10/9/2012 - 9:24pm

My second quarterly scans came back this week. After being told I may have a year to live 8 months ago, I continue to be NED! I had a radical neck dissection, with 57 lymph nodes taken (clear) as well as a tumor in soft mass of rib area. The tumor taken out of my neck was over 1 Pound in weight. Radiation to neck (5 sessions) was my follow up treatment. Am currently on no meds.

The power of prayer works. I will never give up.

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Laurie from maine's picture
Replies 39
Last reply 10/9/2012 - 9:21pm

A couple of years ago people on this site did what I think they called an old fashioned bell ringing -  I believe the way it went is everyone went on and signed in and said they  were ringing a bell in memory of someone.

 

I wanted to say bells are ringing loud and strong here and maine for kevin!

laurie from maine

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simone's picture
Replies 3
Last reply 10/9/2012 - 7:38pm
Replies by: simone, Swanee, Janner

Hi and sorry... I really hate to take the time from all of you with much more serious issues right now.  That said, I'll try to keep it brief and thank you in advance for any feedback.

In the last 2 yrs since my diagnosis with Melanoma (1B), I have had 1 or more basal cells diagnosed after every visit (every 4 months).  I've been using the Plastic Surgeon that my group  recommended but now wonder if I should be using the Mohs surgeon for these?  My basal cells are all on my face or chest and I imagine I'll be running out of skin soon if I keep using the Plastic Surgeon b/c it's usually 10 stiches per basal.  I am asking now becasue at the rate I'm going (and at the rate my family members develop basal cells), I thought I should come up with an educated plan.  My Mel Specialist does not like the topical chemo (sorry do not have name) because it makes it hard for her to track.

Any thoughts?  Once again, sorry to ask such a trivial question but I didn't kow who else to ask.  Thank you very much.

 

By the way... Celebrating 2 years NED this weekend!  :)

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Billy Mac's picture
Replies 1
Last reply 10/9/2012 - 6:46pm
Replies by: DeniseK

Hi, I just joined . Check my info. I have stage 3a melanoma, and we are talking about radiation followed by peginterferon. I am complicated, I also have the autoimmune desease Sarcoidosis, this make other treatments bad if not impossible. Any ideas?
Bill

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sharmon's picture
Replies 2
Last reply 10/9/2012 - 1:58pm
Replies by: sharmon, POW

Does anyone have any information on SRS radiation to metastatic bone tumors on the Tampa Fl. area?  Brent has rib and T11 and T12 involvement and we are researching.

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DeniseK's picture
Replies 7
Last reply 10/9/2012 - 12:49pm
Replies by: Anonymous, DeniseK, Janner, Swanee, POW

Hello everyone.  I'm back!!  :)  I was hoping to not have to deal with Melanoma again but I am highly suspicious that I have a distant recurrence on my forearm in the form of a subcutaneous tumor.  It started a couple months ago right after a dermatologist appointment and getting fully checked.  It started as a small BB sized bump under the skin and in the last 2 months has grown to the size of a marble.  I want to believe that it's nothing but a lipoma or something but I've also been feeling fatigued and vomiting anytime I have any type of alcohol.  I haven't been able to get a scan since right after my surgery over a year ago since I don't have any medical insurance so I haven't been able to keep up on things like I should so my question is can anyone tell me if they think this is a distant tumor or what.  My initial tumor was on my chest on the right side.  I do plan on trying to figure out a way to have this biopsied hopefully this week but any information you could offer would help ease my mind. 

Thanks bunches!!  :)

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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sharmon's picture
Replies 4
Last reply 10/9/2012 - 11:13am
Replies by: Napa K, awillett1991, lhaley

Not sure where to start,  Brent has been doing fine on  GSK MEk and Alimta trial.  Almost 32 months.  Two months ago he had pain in his kidneys and last week after the scan to that area the urologist  announced that the 2 stones seen on the scans could not be causing his pain.  So he orderd another  test and it is showing a dark spot in his spine.  We got a copy of the films to take with us  to Houston next week and we can clearly see the area.  Also some spots near the ribs of the  pain area.

We see the  local doctor on Tuesday.  We are devastated and the waiting for the radiologist report is the hardest thing ever.  He is in alot of discomfort and is saying we need to know what it is so we can get on with treatment, the pain is unbearable.

Somethimes you think you are sailing along and Wham! out of the blue.  Brent will be 65 on Monday and is in good health otherwise.  I am now looking on the internet for treatment options again, and I don't see any Anti-PD-1 trials open.  He will probably be dropped the the GSK trial for progression. 

I read here everyday and see a lot of hope coming from many who are survivors,  I need some of that hope right now sent my way. 

Prayers of all of you,

Sharon and Brent

 

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mandamanda123's picture
Replies 16
Last reply 10/9/2012 - 9:47am

Hi, my boyfriend has been complaining that he has limited mobility following a complete lymph node dissection (underarm).  He said that it feels like a guitar string (maybe a nerve or a ligament?) was reconnected too tightly.  When he raises his arm to a certain point, he experiences a lot of pain and can go no further.  We can even feel the "string" from the surface of his skin.  It's been just over a month since the surgery.  Just wondering if anyone else has experienced this.  Thanks.

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Steve2142's picture
Replies 16
Last reply 10/9/2012 - 9:27am

Hey everyone -

Based on finding three microscopic deposits in a lymph node in my neck (one positive node and one negative), my doctor is adamant that I have an immediate CLND to remove 50 nodes and part of my parotid gland...although he acknowledged that observation is an option. I am not sure why but I just don't want to rush into this surgery and risk potential nerve damage...especially as thinks there is only a 3-4% chance of other nodes being positive. I welcome anyone's thoughts on this. Thanks!

Steve

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KMT2003's picture
Replies 11
Last reply 10/8/2012 - 10:50pm
Replies by: King, POW, awillett1991, Anonymous, sandman, aldakota22, Fen

Well we have been waiting since the doctrors found bone lesioons on Aug 23rd to get confirmation that is was melanoma. After several bone biopsies done that came back inconclusive, we had a new area of concern on the left breast. That procedure wasnt done as fast as we would have liked because of some issues with that biopsy. We finally got the results today. The breast biopsy is positive for melanoma. I am officially stage 4 now. The last few months have been hard dealing with the frustration of not knowing and dealing with the pain from the bone lesions. I am actually glad to have an answer but now I am a little scared about the future. I have two young children and a wonderful husband and immediate family. We will be discussing and hopefully starting treatments on Wednesday. Wish us luck on this next part of our journey as we fight this best. I am B RAF + so we are looking at Z or a trial. Any suggestions or input on the drug?

Kelly

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