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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bostonguy's picture
Replies 5
Last reply 10/14/2012 - 11:55am
Replies by: cojo869, Erinmay22, Lori1976, bostonguy, Anonymous

I am wondering if anyone has Crohn's disease in addition to melanoma?

 

Brief background on me:

 

1.5 mm melanoma on my left chest identified; sentinel node biopsy was positive in one node out of 5 with microscopic deposits (two foci - .27mm and .3mm) .  PET and CT and MRI all came back clean.  I'm scheduled for lymph node dissection on May 16th, next Wednesday. I'm praying that no more positive nodes are found!!

 

I have had Crohn's for about 18 years now; was diagnosed at 16 and am 34.  Since 2006/2007, my Crohn's has been kept in check by Humira, which is an anti-Tumor Necrosis Factor (aTNF)  biologic medication.  There's a lot of literature on the web about a link between aTNF drugs and melanoma, although every doctor (both Crohn's specialists and Melanoma Dermatology specialists) I've spoken to is skeptical. However, my oncological surgeon did tell me that it's possible that Humira could put me at higher risk for melanoma recurrence, which I obviously want to avoid.

 

After I have the lymph node dissection, I'll be meeting with a medical oncologist, probably to talk about Interferon.  I will also have to schedule an appointment with my Crohn's specialist and these two are going to have to figure something out.  I'm wondering what other people's experiences are.  As always, I appreciate any replies!

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Rinn2012's picture
Replies 6
Last reply 10/14/2012 - 10:59am
Replies by: amandamini, Anonymous, Marilynn Eiken, Rinn2012

Hello

I am newely diagnosed.  All I know is that its stage 1 melanoma.

My question is from those of you that have seen dr's already and done treatments, how likely is the melanoma to come back or increase in stage from a stage 1? 

thanks

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beth0277's picture
Replies 7
Last reply 10/14/2012 - 9:01am
Replies by: beth0277, Tim--MRF, Anonymous, Janner

Good morning all. I am 27 years old and go to the dermatologist religiously. I have intense skin fears. I know it is normal to get new moles up until around age 35. I have what started out looking like an ingrown hair spot in my bikini area. I squeezed at it and nothing happened and it persisted so I assumed it was a mole developing. This was about 6 months ago. I will be honest that I haven't really shaved that area much lately to see the spot, but when I shaved a few days ago, I noticed the "mole" is very noticeable now and about 3 times the size of the little speck that I first noticed. It looks completely normal, and is still quite small. The color, shape, borders, everything looks perfect. I just am not sure for new moles that come in, do they start small and get a little bigger within a span of a few months and then stay that size or do they usually pop up spontaneously the size they are going to be? One other factor is that I started birth control in July and I know it can have an effect on moles. I developed several new moles when I was pregnant but I don't remember if they grew to the size they are now or just popped up the larger size they are now. I have another appointment for a full body check in 3 months but if this seems concerning I will go in sooner. The only difference between this and some of my other newer moles is that it is a bit lighter. It seems like most of my new moles have come in darker but this looks more like my older moles.

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AnnaBanana30's picture
Replies 9
Last reply 10/13/2012 - 8:17pm

To say I'm devastated would be an understatment. My dad first found out he had melanoma in late 2008 when my mom discovered a large mole on his back that was half red and half black. He immediately went to the doctor and they removed it...it was stage 2 I believe at that point. By March 2011 he was stage 3 and by early fall 2011 he was stage 4. He did several rounds of Temodar, Yervoy and radiation and nothing would slow this beast down.

 

Watching him go through all of this pain and suffering has been excrutiating to say the least. I hate this disease and what it did to him. The only comfort I've been able to find is that he is out of pain and is in paradise...pain free, next to God. I will see him again. He'll be up there waiting on me. It is my life mission to spread the word about this terrible cancer. There needs to be more public knowlege on how serious and deadly melanoma.

 

I hate this.

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B-Trent's picture
Replies 12
Last reply 10/13/2012 - 1:00pm

Hi, my name is Brian Trent and I was recently diagnosed with Stage IV melanoma on August 15th, 2012.

My life with cancer started back in April 2007 where I was diagnosed with stage 1 with a .7mm lesion on my left shoulder.  I was very lucky to live in Houston, and found myself at MD Anderson where I was told I had a very early stage of cancer, but everything was treatable.  After a few scans, blood test, etc., I had surgery to remove the tumor in my shoulder and a lymph node under my left arm.  Scans and lymph node all came back negative.  Continued to go to MD Anderson for the first 3 years for check-ups/scans, then was told I could just see a normal dermatologist twice a year. 

As quick as I was told I had cancer, it was told it was all gone.  Kind of felt like it never happen, except for when I had check-ups at MD Anderson (never an easy place to go). Even on the 5 year anniversary of my initial diagnosis, it past without me even thinking too much about it.

A couple months ago in Aug, I started to notice a small node under my left arm.  At first didn't think too much about it, but decided to get tested.  Many scans and biopsy later, I was told I had Stage IV M1B (metastasized to the lungs) and needed to start treatment very soon.

I'm currently at MD Anderson getting the Mage-3 vaccine with HDIL-2 regimen.  So far I've done two rounds:

Sept 17th -- 23rd: Mage-3 vaccine + 10 out of 14 doses of HDIL-2

Sept 24th -- 30th: Week-off, which by the way, I got married :)

Oct 1st -- 7th: Mage-3 vaccine + 8 out of 14 doses of HDIL-2

Oct 8th -- current: off week

I'm on this site looking for information, and fellow friends fighting this same disease.

Oh, if anyone knows of any tricks for stopping the crazy itching sensations during the HDIL-2 treatment, please let me know!!!

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Richard_K's picture
Replies 6
Last reply 10/13/2012 - 7:35am

 

On October 9th, The Skin Cancer Foundation awarded their 2012 Skin Sense Award to the PGA Tour, Lucy Danziger, Editor-in-Chief of SELF Magazine, and Genentech with Genentech being honored for their drugs Erivedge and Zelboraf.  The Genentech award was presented by a patient currently using Erivedge and one using Zelboraf.  The honor of being the Zelboraf patient fell to me.  It was quite an honor.

Dick

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islandbreeze's picture
Replies 17
Last reply 10/12/2012 - 12:17pm

I had a biopsy of a flat mole and came back as malignant melanoma stage 4 with clear margins and 1.25mm deep. The dermotologist suggests chemo just in case a cell is moving around in there,the lesion was on my left loin on top of my hip joint.Plus I have many more moles and freckles all about on me.so Im guessing a few of them moles need to be biopsied . I am not taking chemo or radiation.I will not live the rest of my days sufferiong the effects of these treatments.SO I am praying that all is clear after running tests.

Ive been ill since 2010 after my TAH and have been in my bed night and day .I go out once a week and that is a major thing for me as I exhaust myself easly.Chores at home cant be done without breathing heavy and feeling faint- its like my bones and muscles are cracking and about to burst & have to lay down to rest.Even taking a shower or fixing my daughters hair.I take pain pills that dulls the pain in my hips and spine daily so I can manage to get up and get something done.

So this stage of melanoma is terrifying as I dont know yet if its affecting any organs until imaging is done..so naturally my children are afraid to lose their mom.

Time is a versatile performer. It flies, marches on, heals all wounds, runs out, longer then rope and will tell.

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I am going to the patient symposium tomorrow at MD Anderson.  If anyone from the board is attending please look me up so we can meet!

http://www.melanoma.org/get-involved/melanoma-education-symposium-houston-tx--MRF

Tim--MRF

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Dr. Jeff Infante from Sarah Cannon Research Institute will join us next week, October 17th at 4pm Central Time, 5pm EST, 2pm Pacific time, to discuss the future of BRAF/MEK therapies in melanoma. Please send any questions
To register, go to:
http://lisanew.clickwebinar.com/BRAF_ME ... s/register

Phone Call-In:
+1 (917) 338-1451

Participant PIN: 982249# Free webinar: 

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himynameiskevin's picture
Replies 23
Last reply 10/11/2012 - 9:49pm

hi everyone this is Brenda, Kevin's wife.

i just wanted to let you all know that Kevin went HOME with the angels this past Sunday. I dont have much to say other than it was a beautiful moment. When we first got the news that his brain mets had began to bleed and there was nothing left to do, i told him that he couldnt go HOME with out letting me know, i wanted to be there holding his hand. So around 11:45pm on saturday i started to fall asleep and was awoken aroung midnight by Kevin trying to say something. I opened my eyes and he was facing me with his eyes slightly open, he was no longer breathing but his heart was still beating, and i knew, he was waking me up to say goodbye. I held his hand, told him i loved him and how proud i was of him, and thanked him for letting me share this moment with him. 

Through out this journey with him i was terrified of the thought of losing him, but when the time came, i couldnt help but look at it as a gift. We're not religious people, but i do believe with all my heart that we come to this world to experience, and when we're done we go HOME. And the fact that he is no longer sick, or stressing about scans, or dealing with treatments is the only thing that keeps me going. 

That makes Kevin a winner in my book, he handled this battle with gace and finess, and its not about beating the cancer, its about not letting the cancer beat you, and Kevin stayed strong until the end.

I know most of you didnt get to know Kevin as a healthy person, but i hope his attitude through out this will inspire you, and if theres anything to remember Kevin by, is his integrity, compassion, kindess and patience.

Kevin wore a pendant around his neck that read "never be lost", and i hold on to that pendant when ever i start to miss him, i wish i had a pendant for each and everyone of you to remind you that no matter how hopeless you might feel, you are never lost or alone, because Kevin's spirit will always be there holdong your hand.

i love you all, and so does Kevin.

love and healing

<3 Brenda, Kevin's wife.

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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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