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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Harry in Fair Oaks's picture
Replies 9
Last reply 7/17/2012 - 1:21pm

I'm now more than a year into this trial, and I'm doing very well.  No new tumors observed, all the soft tissue tumors are gone, and the couple of bone mets that are still seen on the CT are not showing any activity on the PET.  The drugs have proven very easy to tolerate.  While I had lots of joint pains and fevers a month or two into the trial, the only issues I now have are mild fatigue and the occasional (every couple of months) high fever.

The initial results from the trial (as reported at ASCO) indicate that this combo of BRAF and MEK inhibitors may be more effective than a single agent (e.g. Zelboraf) and is easier to tolerate, with fewer side effects.  My experience seems to bear this out.  I hope that this treatment indeed proves effective, and that it will benefit many others.  It is becoming somewhat of a hassle to keep up with all the scans and tests and appointments, but I keep reminding myself that besides perhaps saving my own life, I'm also doing my little bit to advance knowledge.

Best wishes,

Harry

Too ugly to die!

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Linny's picture
Replies 3
Last reply 7/16/2012 - 4:22pm
Replies by: chalknpens, susanr, Anonymous

An interesting read:

“It turns out there’s a class of T cells (TH9) that make lots of interleukin-9,” Kupper said.  “With this clue we asked whether this could have something to do with the ability of mice to reject cancer.  We went on to do experiments to see if these TH cells that make interleukin-9 cells were good at rejecting cancer, and these are extremely effective at rejecting cancer cells – especially melanoma.”

Stage III, Unknown Primary; 1 positive node in left axilla

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deesbabygirl's picture
Replies 1
Last reply 7/16/2012 - 10:46am
Replies by: Fen

Thank you all for your info it was very helpful when we saw the surgeon last week!  I knew what he was talking about and it was much easier to understand...in my first post I did not know anything and daughter was given a "stage" instead of a Clark level so thank you for helping me to know the questions to ask   it was a Clark level 2 and the Melanoma .7mm she will be having surgery within the next week and at that time will also have the sential node biospy we are hoping that it has not spread and that they will be able to get it now  I will update once we get through the next two procedures thanks to all! and thank you for your prayers

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justlittleoleme's picture
Replies 19
Last reply 7/18/2012 - 10:12pm

At 4:15 am today, I lost the love of my life. He fought a good fight until the bitter end. Someday I will write an update post to recap our past few weeks with this dreadful disease.
He was a father to three wonderful children. Daniel,19 Emily, 18 and Benjamin who is 9.
He loved his family above all else. He was the most selfless man I have ever met and was lucky enough to fall in love with.
Please pray for us this week as we say goodbye to his earthly body. We rejoice knowing he is with our Lord!
Thanks barb

We don't know how strong we are until being strong is the only choice we have.

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Watertree0513's picture
Replies 3
Last reply 7/14/2012 - 7:17pm
Replies by: Anonymous, Watertree0513, awillett1991

I had a spitz neiva removed last year and now I have a long skinny mole growing vertically across the scar and 4 small moles around the bottom. Is this normal? I have always had moles but they really quadrupled when I was pregnant this last year. I had my fiancé count the number of moles on my body and we quit counting at 548. My grandfather died of melanoma in 2010 and my grandma had facial reconstruction surgery from it in 2009. Am I being paranoid Or is there something weird going on?

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/16/2012 - 12:12pm
Replies by: Harry in Fair Oaks, Anonymous, washoegal

Hello,

For a few days, I have a pain in my knee, which started suddenly at night and doesn't go away. It is not constant but "flashing": hurts for 1-2 sec, then go away for 3-4 sec or more, then comes back etc. I feel it most when standing, sitting, lying down but it is better when walking. I am Stage 1B, 8 years post-diagnosis. I have a herniated disk but never had before such symptoms in the knee. Did someone experienced something similar? Do bone metastases have the same pain pattern? I am scared and will appreciate any help. Thanks.

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/15/2012 - 11:01pm
Replies by: Anonymous, Rdmstm, kelsta78, Harry in Fair Oaks

So back in February I had a wide incision done on a 1mm, Clarks level IV melanoma mole on my back.  Had PET/CT scan and ulstrasounds done all come back clear.  Also had another quick check over at skin cancer clinic where we went over other moles and did photographs.  The doctor mentioned to me that it is not always moles to keep a look out for but more like red marks on the skin that are new.  So I now have this small red spot on my face that is concerning me.  It is not going away.  A beautician happened to mention it last time I was getting my eybrows waxed that she sees spots like that all the time.  Like age spots or something...  But now I have a swollen gland or soemething right near my ear just below the spot.  It's quite sore and now I am worried that it is my body telling me something isn't right.  And of course this had to happen on a Friday afternoon and can't ring the doctor until Monday!  Kind of feel like I could be being paranoid and just thought I would post this and get other people thoughts since I can't contact the doctor for a couple of days..

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aldakota22's picture
Replies 14
Last reply 11/25/2012 - 6:29pm
Replies by: Anonymous, mclaus23, Jeff's Mom, kylez, aldakota22, Karin L, lhaley

 Does anyone have any info on 2 fighters i have not seen any recent posts.They are Lisa13 and Jeff son of Bridette.Know they have a very tough fight and was wondering how they are doing.Been saying an extra prayer for both. Beat the Beast.     Al

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akls's picture
Replies 4
Last reply 7/14/2012 - 1:16am
Replies by: washoegal, ylkay, gabsound, Linny

Hi everyone.

 

I just have a quick question for those who have had axillary node dissection.  I had my surgery more than 3 years ago and I've had some pain mostly in my arm pit area some nerve pain too.  I know this is common.  I have no signs of lymphadema.  About two months ago I started having should pain with lifting my arm.  Hurst when I wash my hair, when I'm sleeping on that side, pretty much any movement above my head.  I don't think I injured it recently.  If I did I don't remember it.  Just wondering if anyone else has experienced this pain.  Saw my onc. in May and chest x-ray and blood work was all good.  Thanks for any advice.

 

Amy S. in Michigan

Stage IIIA 6  years NED Completed 1 year interferon 2009.  God is Good.

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shopgirl's picture
Replies 7
Last reply 7/14/2012 - 9:53am
Replies by: Linny, audgator, shopgirl, lunchlady, Anonymous

Hi!

My mom was told yesterday she had Metastatic Melanoma after have a tumor in her lymph node removed.  The did a head to toe exam and found absolutely NO sign of the primary melanoma.

Can someone tell me what this means?

Also, on the site I read the "stages" of melanoma.  Since this is NOT the primary and was found in her lymph node does this automatically mean it's Stage 4 and does that change her prognosis?

She's going in today for the PET and CT scans, but won't get her MRI until next week after the staples from the tumor surgery are out.

Thank you ahead of time for your answers and support!

-Shopgirl

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chalknpens's picture
Replies 16
Last reply 7/14/2012 - 10:46am
Replies by: chalknpens, Minnesota, Anonymous, Janner, AngelaM

I wrote here earlier this month about a large melanoma site on my back. It is healing now, and I've returned to the dermatologist. He looked me over, found several suspicious sites, used cryosurgery on six of them and biopsied two. One came back as melanoma and one as squamous. Both were sites I'd asked him about during that first visit, and for both he said they looked like skin irritations.

I'll be back to the surgeon for slow Moh's on the squamous, and excision on the melanoma. Is it common to find melanoma in two separate sites?

I am not perfect, but I am enough.

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Snickers60's picture
Replies 13
Last reply 7/13/2012 - 2:44pm

I've read some sad post here about how quickly things can change and turn.   My beloved Warrior Wayne has done so

well on Zel that he was NED in 7 weeks.    Now to my question:   HOW do you live with the OTHER SHOE possibly

dropping all the time ?    Even with this GREAT REPORT on Wayne, I find myself in a HOLDING PATTERN of sorts.   

Wayne has had colon cancer at age 40 and the melanoma on his ear lobe at age 50 and then the mets at age 62, but this

time is so different for some reason.  I cannot seem to get hold of it.  I feel as if I'm unconsciously trying to PREPARE my self

all the time for life without Wayne which seems to be a worst fate than any I can think of, we are so very close and have such

an awesome and very happy and loving marriage of almost 27 years.

 I 

know that GOD has been more than a LITTLE GOOD to us.   Keeping him through so much, but we BOTH seems to have

this "SHOE DROPPING" thing hanging over our head, knowing how quickly things can turn.    I know that being so ill myself

and having struggled with DEPRESSION for decades in this abhorable pain I live in has a lot to do with it, but what do you 

do to make LIFE NORMAL ???     As NORMAL as can be ?    I'd love to hear how you stay above the curve with your

emotions and FEARS !    We are normally very positive people - have great faith, but this time.....this time, something is

just bad wrong......we try to live a happy life, keep the joy, keep up the spirits, be POSITIVE, and we are very light hearted

people laughing at things most people would weep over, but still we have this HANGING OF THE OTHER SHOE over us that 

seems to dampen us in small ways all the time.   Please share how you handle this EMOTIONAL SIDE OF IT if you would.

Thank you for your time and GOD'S BEST BLESSINGS AND HEALING TO ALL OF YOU !

Nancy (devoted wife of 3 X warrior Wayne ) 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Sherron's picture
Replies 7
Last reply 7/17/2012 - 8:55am

Anyone hear from him?  So many people I dont know anymore.

 

Take Care,

 

Sherron, wife to Jim FOREVER (19 MONTHS OUT NOW)  Still miss him so much.  Each day is a struggle.  Wishing you all well.

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Mymlan's picture
Replies 4
Last reply 7/19/2012 - 9:31am
Replies by: Snickers60, Mymlan, lhaley

So I started off with a Diagnosis of Melanoma Stage II, left ear, sent to M.D. Anderson who gave me a preliminary diagnosis of Atpyical Melanocytic Proliferation on my original slides... They then sent for the remainder of my mole and performed their own biopsies, final diagnosis: a cluster of shallow melanomas without clear margins, most towards the edges of the mole. Surgery is scheduled for Monday and Wednesday. They'll do the excision on Monday and the plastic surgery on Wednesday. 

I am very new at this...what should I make of all this...? Unclear margins? Any input is greatly appreciated! :)

"The journey of a thousand miles must begin with a single step" - Lao Tzu

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Wally's picture
Replies 10
Last reply 7/24/2012 - 10:31am
Replies by: Wally, Lilbrat, Minnesota

I had an in-situ malignant mole removed from my ear in 1006 and this progressed to my RML resulting in a Lobectomy in 4/11. Following this op I experienced continious pain in my chest - rib area. This was ascribed to nerve regeneration so no further action taken. My 4 monthly check-ups were of little consequence with only a Mel blood count taken, which showed low count and an NED dianosis. Of late I have had severe body aches starting at my hips to my legs and also my shoulders and hands. Felt much like arthritis or gout, I suppose. Walking became difficult. My GP brushed this off as old age. My Oncologist was a little more supportive and suggested some X-rays. These have indicate a possible Pleural Effusion.

My question is - are these the typical symptoms of a pleural effusion and what are the chances of this being a malignant effusion?

if the result is possitive (I go for a pet scan on 18/7 to determine the extent of this finding) what is the process. The Oncologist did not discuss any of this with me, sauying lets wait and see what ther outcome is first. I find this difficult as I need to prepare myself for variable possbilities.

Can anyone out there please  help me with answers as it is a long wait to 18/7. Best regards to all and may you all experience speedy recoveries. Wally from RSA.

The sun shines at the dawn of each new day even though it may not always be visible.

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