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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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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aldakota22's picture
Replies 22
Last reply 4/7/2013 - 10:06am

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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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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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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