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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Wow Sarah it sounds like your son needs something to work really soon. 30 to 40 brain mets and already had lots of radiation. Poor guy. I feel so sorry for him.

Keytruda might work a miracle but in my opinion he needs something really special. You already go to Chicago and that is where this trial is. It's at the University of Illinois in Chicago. The trial number is NCT02355535. One of the names for the medicine is PAC-1. It deals with melanoma and other cancers with a specific focus on the brain.

You can call the nurse Palak Soni at 312 413 1069. Her email is psoni16@uic.edu. She is very very sweet but talks a lot. Also still has a little bit of India accent but I could understand her fine. Also she can be a bit laid back and not into urgency but very gentle persuasion should get you in quick. Afterwards she was very quick in getting stuff done. Like she had the biopsy results in 2 weeks compared to the university of chicago 7 weeks.

Another nurse that I didn't meet is Alisha Williams at 3124132746. alishaw@uic.edu

The doctor is Dr Oana Danciu who might be at 3129961581. ocdanciu@uic.edu

I reallly really really hope this helps. The only reason I knew of this trial is because brian or kevin or um can't remember who posted it about 6 months or so ago. When I was there in May I didn't see the doc just nurse Palak but I decided it was too scary to be the first person on this. The trial just started in May. Hopefully it will work a miracle for your son Arthur.

Artie

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jahendry12's picture
Replies 23
Last reply 8/19/2015 - 3:24pm

Very sad news this morning. Our brave warrior known on this forum as Jerry from Fauq has been sent to be with God. He was one of a kind. He defied all odds and reminded everyone in the melanoma community that they are not a statistic and there is no expiration date stamped on them.  He beat the odds for 8 years so he could help educate and support others. A huge heart, a wealth of knowledge and a kind, giving, humorous man. He was the first one to reach out to me on chat when my husband was diagnosed 4 years ago.  You will be missed T Jerry Ellis ❤️

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green7ea's picture
Replies 6
Last reply 8/19/2015 - 12:46pm
Replies by: green7ea, dfeng, CHD

Hi everyone,

My cousin, 32 and otherwise very healthy, was recently diagnosed with oral mucosal melanoma.  We've been on the hunt for a specialist or cancer center in Canada that have experience in treating this form of cancer.  Right now we have an option to treat him in China for the short term, as they have more experience with this type of cancer.  But we need to figure out an option for his long term care within Canada, can't keep going back to China.  Does anyone have any knowledge of who/where we should go to for help on his treatment?

Thank you so much for your help!!

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Hikeratheart's picture
Replies 9
Last reply 8/19/2015 - 8:27am

Hi,

I have a wide re- excision July 1st. Having 17 stitches (breslows 4.5) and so relieved it did not spread to my.lymph nodes. I am healing well, but in the past few days noticed a few small blisters and one larger red like pimple near the site. My susurgeon said I had good clean margins.
I see my dema next week. Could something new show up this quickly?

Scared in Milwaukee ......thanks for any insight

KathyMcC

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cricket's picture
Replies 4
Last reply 8/19/2015 - 6:38am
Replies by: Mom2Addy, cricket, stars

Hello,

I've had over 50 biopsies since November of 2012.  4 were melanoma and two basal and squamous cell. Of the 50, 5 biopsies come back benign. All others were atypical, severely atypical, pre cancerous, basal cell carcinoma, squamous cell carcinoma or melanoma. I recently had 10 biopsies, I go back on the 31st of August for 2 exisions and 6 cryo treatments. I feel like going around in circles. Skin check, schedule biopsies (wait 4 to 6 weeks for the appointment), have biopsies (wait 2 weeks for results), get results, schedule excisions (in 4 to 6 weeks , first available appt) and by now we're past time for my 3 month skin check and we do it all over again. It's been this way for almost 3 years! There has to be a better way. 

I really do need to see a Doctor that can at least do Mohs surgeries. 

My dermatologist says that it would be impossible to take every suspicious mole off of my body at once. .

Any recommendations? I'm in Charlotte, NC 

Mary 

Cricket

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distracted's picture
Replies 6
Last reply 8/19/2015 - 3:43am

Just saying hi at the moment. Invasive Melanoma in the chest, Breslow 6mm, Clarks IV. Removed and biopsied, Stage 2 confirmed.  

MRI (brain), PET/CT, Ultrasound (with needle biopsy) results due in a day or so.

1.1cm abnormality found in the draining lymph node. 2 abnormalitles found under the arm. (These are the areas needled biopsy and currently with pathology)

Stage 3 confirmation a certainty. Stage 4 pretty much the same.

I have a great team looking after me.

 

PET/CT scan are amazing though I wish I knew more about how to read this stuff. White spots on the brain, just stuff like that but I will know more once I have seem the report, . I am currently hoping for the best, but preparing for the worst.  

 

 

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Keepingyourchinup's picture
Replies 6
Last reply 8/18/2015 - 7:49pm

Hi Everyone,

So I have several questions.... I know a few of you on here have told me you received the pegylated interferon treatment but stopped it for mutliple reasons or chose not to go down that road. I started the treatment in June but have decided to stop it as I really don't like what it has done to my quality of life. I am stage 3A and this is really the only treatment I qualify for. I am NED for now but am a newly diagnosed melanoma patient, since April of 2015. I have lost 20 pounds, the fatigue is terrible, and I sleep at least 16 hours a day; I won't go into the rest of the symptoms that go along with this. I decided that I would just "watch and wait" for now as I don't see the statisitcal value in this drug and I would rather have a good quality of life back then to live like I have been since June. I originallly felt like  a whimp for quitting but 5 years of feeling like this is not for me. There are pills to combat some of the side effects; I am on lexapro, zofran, ibuprofen, and they were going to prescribe an appetite stimulant before I said enough is enough. This is all very frustrating, which I am sure you can relate to.

Anyway, my question is how long was it before you started to feel like yourself again after stopping the treatment? Also, I know I have to follow up with my surgeon and oncologist for a specific plan but how often are you receiving PET scans? I had one in June and it was clear but I am not sure what the whole "watch and wait" plan is. I like to be prepared before I see my docs so I can make an educated decision in this process.

Thank you for any help that you can offer.

 

Kathy

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/18/2015 - 7:25pm
Replies by: Anonymous, stars, Tim--MRF

I had a mole on my leg that a surgeon removed on Wednesday. The mole was very concerning to me (it itched and sometimes was painful to touch) and I had been worrying about it non-stop for 2 years. (that’s when i first noticed it). 3 GPs told me the mole is nothing to worry about, 1 dermatologist also confirmed that the mole doesn’t look like a melanoma but told me to watch for changes. (He looked at the mole with something that looked like a magnifying glass and a light under the glass). Then it came the last dermatologist I saw, and the first thing she said was that it looks dark. She said it is better to have it removed so i can stop worrying, but she seemed to be concerned about how dark my mole was. Is dark always bad? she got an appointment for me from a surgeon the day after i saw her and the surgeon removed the mole (through punch biopsy). The surgeon didn’t also seem to be concerned. First thing he said was well this doesn’t look that bad. 

My mole was 4mm with brown borders and a dark (almost a dark black) centre. it was flat, and it didn’t grow a lot in 2 years. Maybe 1mm-2mm. (I guess that is still considered a change but i also gained weight, so not sure if that would be the reason for change in size)
They said I will get the results on the 26th when I go back to remove my stitches. I can’t help the worrying. I do suffer from health anxiety and I’m finding it very hard to cope with the waiting. I actually had a dream last night that I was told I have melanoma. 
How should one cope with the stress? I’m having nightmares when i sleep and I just think it’s causing a great deal of stress on me which can’t be healthy. I’m a male in my mid 20s.
 
Is it safe to assume that when 3 GPs and one dermatologist thought the mole is not melanoma, i should stop worrying about it? I have read so many stories about moles that ended up being melanoma and the doctors also considered those moles normal so that makes me even more worried. 
 
This is a picture of mole the day I had it removed from my leg. 

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Anonymous's picture
Anonymous
Replies 26
Last reply 8/18/2015 - 6:50pm

Just wanted to state that some people need to be anon because of their jobs or not wanting their friends to know their diagnosis.  I know I lost many friends who avoided me because it scared them.  Also, many "real" names on here are made up fake ones anyhoo.  So Ed, etc, leave the anons alone, they have good reasons.

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bjorne's picture
Replies 2
Last reply 8/18/2015 - 6:09pm
Replies by: bjorne, Ed Williams

I found this Cell article, I found it very interesting and I would like to share it with you all, maybe someone with more knowledge,  or contacts with MD doctors or researches could give a read.

http://www.cell.com/cancer-cell/abstract/S1535-6108(15)00253-6

it sounds promising as it follows a new (at least for me) concept of treatment.  I hope that someone can put this in MD o Researchers hands. 

"The strategy is decoupling molecular interactions in a key point in the chain of transmission.  This is what achieves the DEL-22379 molecule that prevents teh association (dimerization) between two proteins ERK. 

Thank you all

Husband

Bjorne - Husband

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specka's picture
Replies 12
Last reply 8/18/2015 - 5:04pm
Replies by: Marianne quinn, Anonymous, kylez, Ed Williams, specka, Bubbles

Its possible my husband could start a clinical trial for Avelumab. He has a choice between that and Opdivo or Keytruda.

He was diagnosed in February with stage 3b. He had the main tumor, a satellite, two pre melanomas and four lymph nodes removed in the first surgery. 3 of the 4 nodes were positive so he had his axillary nodes removed. Then had radiation and yervoy. The last scan revealed a 1 cm spot on his liver. Now its time to decide the next step.

There is a clinical trial for Avelumab. A drug that i can find very little about. I tend to gather as much information as possible from anywhere i can, so not being able to find information is unsettling for me. Still, its a new drug and I have only been in the cancer game for a few months.

Or he could go with Opdivo or Keytruda. Has anyone faced this dilemma? Or something close to it?? Or perhaps, have any information that I dont on this new drug for treating Melanoma?

Thank you,

Rebekah

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/18/2015 - 5:10am
Replies by: Millykamp, Thandster

Hello again. 

I go this Wednesday to U of M for the whole testing, full body exam, blood work and all. And meeting with the Ocologiat Dr. Chang to talk about my surgery. 

I was wondering what are some of the questions I should be asking? I got some written down but in case I am forgetting some, I am hoping you guys can help me out..  Thanks 

Melissa 

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camdon08's picture
Replies 2
Last reply 8/17/2015 - 10:20pm
Replies by: Christine.P, cricket

I recently noticed that a mole on my right shoulder/chest had something black (almost like a scab) coming out of it. Without thinking I pulled it off which made my mole bleed. I have tried to find info on what it could have been but with no results. I am hoping that someone can give me an idea as to what the black thing was and why it was coming out of my mole. 

 

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stars's picture
Replies 7
Last reply 8/17/2015 - 4:46pm
Replies by: DZnDef, stars, DianaD

I went to see a derm yesterday for a second opinion - to date my treatment has been through a skin cancer clinic run by GPs (three primary mels - stage 0, stage 1, stage 1). The derm was quite impressed - if that's the word - at meeting someone with three mels. He established that I didn't have familial mel (no family history), nor did I have dysplastic nevi syndrome or whatever that's called where you have hundreds of weird moles. He puts my mel down to early, harsh sun damage (I grew up baking under very harsh outback sun in Australia, in the days before sun safety). He had a good old look at my skin, but a bit too quickly for my liking - either he's that great that he can do it quickly, or he's not that great and did a half-ass job. He biopsied two moles on my back - shave biopsy, which I queried as I prefer full excision with 2mm margin. He assured me the shave would get the full lesion and 2mm margin as well, which to be frank I don't believe. Both moles were not regarded as suspicious by the skin cancer clinic GP, or my family GP who did another skin check a few weeks ago. One was a flattish brown mole with a tiny dark spot - biopsied because of the dark spot - the other was a smaller 'whirly' mole with blurred edges. I've had one of those biopsied before and it was moderately dysplastic so worth taking of. It was biopsied because of the smudgy blurred edges. So this is my third full skin check in two months - two GPs (or general practitioners) and one dermatologist.And I am again playing the waiting game, probably until Monday. He recommended six monthly checks for me (assuming the biopsies are not too concerning), which I would very much like. I would LOVE to have to think about mel only every 6 months (or perhaps 1 / month self skin-check) !

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DZnDef's picture
Replies 2
Last reply 8/17/2015 - 4:23pm
Replies by: DZnDef, Anonymous

Can anyone tell me if this is something to be concerned about?  I have never seen anything like it.  This person has a 1cm dark mole in the center of their back that's always been there.  But it also has a large white patch all the way around it.  Like a perfect circle of whiteness that is at least double the size of the mole.  Does anyone have experience or insight on a situation like this?  

Does the answer change if this mole is on an 11-year-old girl?

Hoping I'm just being paranoid due to my own situation.  This precious girl is my niece.

Maggie - Stave IV (lung mets unknown primary) since July 2012

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