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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Becky's picture
Replies 3
Last reply 10/17/2012 - 12:54am
Replies by: DonW, NYKaren, Phil S

My son Ben was feeling realy sick recently...really swollen lymph nodes on his neck. He was just about to travel to Baltimore to visit friends and then to Finland for 6 weeks (he met a girl...). His doctor did a needle biopsy on his neck becuase he was not sure what was gong on. He ended up in the ER in Baltimore where they did a test for Mono.

Ends up he has Mono...goes to Finland anyway (new love) and is starting to feel better. I was so happy to hear thats what it was, as opposed to the cancer rearing its ugly head. It is weird how our perspective changes.I hate melanoma.

I read the posts daily and keep everyone in my thoughts. I am still heart broken about Kevin. Keep fighting the fight!!

 

Becky

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Souxie_q's picture
Replies 6
Last reply 10/17/2012 - 6:32pm

I just want to thank y'all for posting about your experiences with Zelboraf. My sisters story starts with a melanoma mole removed when she was 18. At age 39 she was diagnosed with metastatic melanoma, stage 3. At the time she lived in Houston and was able to go to MD Anderson for the start of her interferon treatment. But has since moved to PA. She, after complaining of stomach pain, was diagnosed with gastritis in August 2012. She lost 13 pounds in a month and lived with this pain. In mid September she went back to the ER and when they did a CT it showed mets in her liver, pancreas and lungs. She is 45 and has a 13 yr old daughter and is a single mom.
She went home and awaited Yervoy to get approved, in the meantime her cancer grew and she was hospitalized again oct 7th. I flew in to be with her and have slept in the hospital for 5 nights now. It's unbelievable to me how much this has progressed already.
Good news today is that she is BRAF + and instead of Yervoy they will be giving her zelboraf. I'm SO hopeful that she will do well on this treatment. We just lost our mom to a pulmonary embolism in Jan and as a family, have dealt with so much. I just want to wish all of you well, fighters, survivors, family members. And thank you for sharing your stories, it makes the uncertainty a little more bearable.

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sharmon's picture
Replies 9
Last reply 10/16/2012 - 7:01pm
Replies by: Anonymous, NYKaren, lhaley, sharmon, swissfarm7, King, rosa1

Brent was at Dr. Webers office on Wednesday and was told MERCK Anti pd-1 trial had an opening for him and it was in about 3 weeks.   Got a call today from his nurse after we called to find out about upcoming scans and blood work  and  the trial cordinator  used the word ( accural ) .   The long and short of it is that the trial is full.   The company is not taking anymore people. What can a person do to keep from losing their flippin mind.  There has got to be a better way to manage these  trials from the drug companies.  People are dying and the new drugs are out there!

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Sherron's picture
Replies 3
Last reply 10/15/2012 - 2:56pm
Replies by: rosa1, Swanee, aldakota22

Have not seen her post in a while...just thinking about her....Also this is not melanoma related, but cancer related...my 85 year old mother has been

diagnosed with esophagus cancer.  I would appreciate prayer in her behalf.  2 years ago this time, I was taking Jim to the VA every 14 days for blood

transfusions....This is extremely hard to think about all that and now dealing with cancer with my sweet mother.    Thinking of you all and wishing you all 

the very best....Hoping Lisa is okay.

 

Take Care,

 

Sherron, wife to Jim FOREVER

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swissfarm7's picture
Replies 21
Last reply 10/17/2012 - 10:43am
Replies by: Anonymous, swissfarm7, Mandi0280, DebbieH, POW, lhaley, jmmm, piii, Cooper

Oh, to have had a crystal ball and changed insurance plans six months ago when the opportunity presented itself!  But, as an ultra-healthy family, we've been comfortable for years with our coverage.  It's a very basic plan and met our needs, but it doesn't include prescription drug coverage.  I've only realized that this means the low-dose interferon won't be picked up by our insurance. 

Yes, in the ongoing ridiculousness that is health insurance, the high-dose (administered daily at the infusion oncology clinic) is covered.  The low-dose (second phase, administered at home) is not.  And I can only imagine the price tag on this stuff. 

Have any of you here been in this situation?  If so, how did you handle it?  Thank you!  Tomorrow's the Big Day, btw, when Hans will begin treatment.  Call me crazy, but I'm on pins and needles.  Just want to get going with it already, kwim?!

Warmly,

Colleen

Keep on keeping on.

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chalknpens's picture
Replies 2
Last reply 10/14/2012 - 10:49pm
Replies by: aldakota22, dellriol

Hi all,

I just had my first quarterly follow up after summer-long surgeries on two melanoma sites, two basal and one squamous (along with eight cryo-surgeries.)

The dermatologist checked me head to toes, and found only two sites on my face; he treated those with cryosurgery again.

Nothing to biopsy for this round. I'll see him again in three months. What a relief to not have surgeries through the holidays ahead!

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I am not perfect, but I am enough.

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amandamini's picture
Replies 6
Last reply 10/19/2012 - 8:05pm
Replies by: amandamini, Anonymous, mel123, POW, Janner, dellriol

Hi all,

 

I was diagnosed with stage 2 Melanoma Oct. 2012.   I gave birth to a beautiful and heathy baby girl in May of this year.  During this pregnancy my husband saw a mole on my back and asked me how long I have had it.  I looked in the mirror and thought huh?  I don't recall seeing it before.  But maybe I just never noticed it. After all it is on my back. That was it.   Strange how unconcerned I was.  I was not educated on skin cancer at all!  I finally decided to make an appointment to get it checked out.  The Derm did the biopsy and a week later got the diagnoses.  So here I am...  Terrified for myself and my family.

 Tomorrow I am going into surgery to have the SNB and the excision. This week they did a Lymphoscintogram and located the sentinal node or I should say nodes as it went to 2 places.  Both my arm pits.  My first question is how is it staged when they do not know if it has spread?  When the Derm.  called me he said that it was 1.00mm which is stage 2.  Everything I have read indicates to me that it really has not been staged yet.  Also he referred me to a plastic surgeon.  Should I go to an oncologist?  Also diet-  I have read a lot about vegan diets and how it can help your body fight cancer.  I would love to hear any and all thoughts on this.

I would love to hear your stories as well!

Amanda

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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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EmilyandMike's picture
Replies 5
Last reply 10/15/2012 - 7:21pm
Replies by: EmilyandMike, POW, JerryfromFauq, CarolA, Anonymous

This article is a good read for those undergoing SLNB or if you are stage 3 - especially those with micromets 

http://www.clinicaloncology.com/ViewArticle.aspx?d=Solid%2bTumors&d_id=1...

Our experience with melanoma: http://emandmichael.wordpress.com/

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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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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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sharmon's picture
Replies 4
Last reply 10/18/2012 - 11:37am
Replies by: Anonymous, Amanda, Bubbles

Hi, this is Brents wife Sharon, after 32 months on Gsk Mek and Alimta alone than in combo he has mets to his ribs and vertabra. (He is Braf negative). We thought it was a kidney stone at first.  Test showed different.  He is being treated at MD Anderson with Dr. Falchook but we live in Tampa.  To ease the pain I made an appointment for a consult with Dr. Weber to get a referral for a radiation therapist to ease the pain.  We don't go to MDA until late next week.  While in  Dr. Weber's  office he talked to us about the Merck Anti-pd 1 trial that he has and after some discussion about needing a brain MRI and tissue sample we were put on a waiting list that he says is about 3 weeks out.  We need to meet with Falchook next week to go over the chance of him being removed from the GSK trial because of progression on Thursday. 

2 months ago signed a consent for Foundation Medicine to evaluate his tumor tissue for a know mutation.  He has been negative for all that MDA had tests for.  It may uncover something that there is a targeted  therapy for, and maybe not.  The  Mek targeted theraphy has worked for him in the past as a single agent, maybe with it combined with something else he can get stable again.

I know we need to make this decision on medical information not emotion.  (Quote from Charlie). 

Any thoughts from any of the warriors or experience is needed.  I am not thinking straight at the moment and something someone might add would help me get a bit more centered.

Sincerely,

Sharmon

 

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JerryfromFauq's picture
Replies 7
Last reply 10/19/2012 - 9:48pm
Replies by: Jim M., swissfarm7, islandbreeze, Anonymous
I'm me, not a statistic. Praying to not be one for years yet.

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sailinjeffnk's picture
Replies 8
Last reply 10/15/2012 - 1:13pm

I'm a 28 year old stage 3B patient starting my third month of low dose interferon after the month of high dose (and radiation and righthand full neck dissection).  I've been doing OK on the low dose, the fatigue and anxiety have been the worst side effects.  I have been able to control the anxiety with meds, thankfully.

 

The fatigue is definitely getting worse and worse.  I am sleeping a lot and it is cutting in to my ability to do much out of the house.  I have just had to return to work because I am out of FMLA time.  I am fortunate that I can telecommute and have a very understanding boss but I am finding it very difficult to make it through each day.

 

So, from the folks who have made it through the 11 months of low-dose, how did you do it?

I'm feeling right now that there's an extremely easy way to solve this fatigue problem....

My photography: http://jeffreyswansonphotography.com/

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