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.

Expand/ Collapse Topic
 
Replies By
View Topic
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

Login or register to post replies.

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

Login or register to post replies.

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 

Login or register to post replies.

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. 

 

Login or register to post replies.

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) !

Login or register to post replies.

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

Login or register to post replies.

Hayden30's picture
Replies 3
Last reply 8/17/2015 - 10:18am
Replies by: Anonymous, Mat, jamieth29

 

ive been on mekinist and tafinlar for 2 weeks now, and in that time I've had several subcutaneous tumors that I can feel get smaller and some I can't even feel anymore. I know that the drugs are working, but in that same two weeks I had a tumor in my brain grow from 4mm to 20mm!! I've talked to two melanoma specialists that say the drugs do cross the blood brain barrier, and that's the reason my doc put me on them to begin with. Now I'm reading about it and getting conflicting info. Does it take them longer to work on the brain possibly? 

 

Login or register to post replies.

Replies by: stars, davekarrie, Tim--MRF

Hello all,

I am wondering if there are any stats on the most durable treatment for widespread stage 4 mel. I have read that there are people out there more than 5/10 years who are NED.  Has there been any studies on these individuals and treatements that may be the most durable with prolonged NED?  I know everyone is different with regards to age, disease and other things.

Just can't imaging not being here for my family and will do anything to get to NED! Hate this disease.

Love to you all, keep up the fight!!

Live life to the fullest and enjoy each day! #noonefightsalone

Login or register to post replies.

cbeckner98's picture
Replies 7
Last reply 8/16/2015 - 11:04pm

Hi all,

My Dad just started Keytruda for his Stage 4 melanoma (with multiple lesions in brain and one in lungs; after doing WBR in June) but he has had significant swelling of one of the brain tumors which is now causing cognitive impairment.  He basically stopped eating/drinking last weekend at home, then we got paramedics to get him to hospital on Wednesday, he is on 8 mg of steroids twice per day as of Wed. night, and then now he is resisting eating again.  He is getting plenty of fluids - but we have a big meeting with the gamma knife/surgery specialist in Seattle this coming Wednesday and so are trying to figure out how to get him healthy again (or otherwise that doctor won't see him and/or won't work on him).  His largest brain tumor is located in his frontal lobe - and hasn't gotten bigger over the last two weeks but does have swelling around it.  Has anyone seen this kind of brain met swelling while on Keytruda?  Did the effects of it last long?  Besides increasing dosage of the steroids, what other options do we have?  The local hospital is pushing to put my Dad in hospice/a nursing home - but we haven't even tried a full course of Keytruda yet and only discovered his cancer in mid-June.  There must be other options!  Any advice on this would be appreciated!  We are not ready to give in to this disease!!!

Thanks,

Carrie

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 8/16/2015 - 10:51pm
Replies by: cricket, Mom2Addy, DianaD

Can someone recommend a good dermatologist who is up on melanoma in Charlotte, NC? Thank you! 

Cricket

Login or register to post replies.

Rocco's picture
Replies 9
Last reply 8/16/2015 - 8:31pm

-August 11, 2005 I was told I had cancer.  3 weeks later at a 2nd opinion I was told I had Stage IV.  Fast forward 10 years later and I'm NED.  Details on treatments, etc under my PATNET log.  It's been a long trip, but I'm still so very glad to be here.  Hope and good vibes to all in the fight, their care givers, families and friends.  And many, many thanks to the skill and compassion of the doctors, Physician's Assistants, nurses, and staff at Dana Farber in Boston!

Hang in there!

- Rocco, IV in 2005, IPI responder in 2008, NED since 2009

 

 

Luke 1:37

Login or register to post replies.

BrianP's picture
Replies 12
Last reply 8/16/2015 - 5:48pm

As many of you know I have been on a sequential trial of ipi and nivo for the last two years.  I started the trial with 2 tumors in my abdomen.  Those two tumors are now about 50% of what they were at about 2 and 1 cm.  I had my last trial infusion of nivo on Wednesday.  For the last couple months I've been thinking about what to do at the end of this trial.  All along I've been thinking about continuing treatment for at least another 6 months to see if more data becomes available on durability and recurrence of patients who have stopped treatment.  I traveled down to Moffitt a few weeks ago and talked with Celeste's favorite Doctor, Dr. Weber.  His recommendation for me was to stop treatment.  He primarily based this recommendation on his first nivo trial.  He said he had 15 patients who either made it to 2 years or made it a significant time before having to stop treatment due to side effects.  Of these 15 patients none have had a recurrence.  I didn't ask him how long it's been since these patients stopped treatment but I would imagine they are in the 1 to 2 year range now.  He also pointed out those patients were on a lesser dosing schedule than I've been on.  I asked him why so many patients who respond seem to have a response like me rather than a complete response and he said it appears that our immune system "walls" off the melanoma.  His believes that the nivolumab should be given to maximum benefit (achieve NED or achieve stable disease) plus 6 months. 

I have my next scan in about a month followed by a CT guided biopsy.  In the meantime I guess I'm having a "vacation" from nivo.  Based on the biopsy results will determine my next course.  If it comes back as necrotic I'll be done with treatment.  If it isn't necrotic I'll be looking at resecting the remaining tumors.  Dr. Weber said don't be surprised if it's not necrotic. 

Anyway, just wanted to share Dr. Weber's thoughts with those in the same boat as me.  Coming off the drug cold turkey is not an easy thing to do, especially when you are virtually experiencing zero side effects.  If anyone has had any similar conversations with their doctors I'd be curious to hear them.  I know Laura's Dr. Hodi has a very different take on this. 

Brian

Login or register to post replies.

Hi All! Sooo, here I thought maybe, just maybe that I'd never see the likes of melanoma again. I got a shocker. Well, in a way, that little voice seems to quite never disappear...but, it was a good run for over 10yrs. 

A little background: I was first diagnosed with 2C back of upper right arm (lymph nodes were clean) & went through a full year of high dose interferon. I never lost weight on it, if anything, I still had my appetitie. I was a lot more sensitive to salt as I remember. I went to the infusion room at the hospital everyday for the first 30 day & then I gave myself a shot in the stomache 3x a week for the next 11 months. I had excellent PPO insurance at this time.

 

Fast forward to today & no Insurance: A few months ago I had a bit of a nodular bulge in the abdomen area---I thought it might be a hernia. I went to a community type clinic and they said it was cellulitis--prescribed me a very strong antibiotic I had never had before for 10 days. The side effects were horrendous. On day 8/9 my whole body was on fire & I was red & blotchy...then I looked in the mirror and was covered head to toe with little red dots. I freaked out. Found out after calling the pharmicist that is an allergic reaction...popped a few benadryl. It took several days to over a week to get it out of me. So, the little bulge remained, but, now started to change...went to another clinic and they said it looked like an abscess and to go to the ER. The ER admitted me to the hospital for surgery. They believed it to be a hematoma. They did make comments as to the fact they have never seen anything quite like it before. (now here comes that little voice) Surgery went well & I was impressed they didn't try and kick me out of the hospital sooner since I don't have insurance. I was there a couple days & they wanted to keep me a 3rd day (but, I had a dog at home & convinced them to let me go) They sent samples off to pathology. I learned how to pack the wound & change my own dressing, but, also utilized the free clinic services. A few weeks go by & I mention that close to the incision area that it feels tough & denser. I also had a follow up appt with the surgeon (he didn't charge me for the visit & cut what I owed in 1/2) he said it was healing beatifully...so I went with it. More time passes and I go back to the surgeon's office & that's when I found out the bad news. He said it came back as melanoma. He was shocked. I am, too and frozen.

So, in the last couple weeks it has redeveloped again and gotten larger & I will now have to self admit back into the ER to get surgery again. I. AM. SCARED. 

I am looking for any guidance, tips, support, friendship, etc. I need to get a plan together, but, everything is moving so slow, but, melanoma is not on any schedule.

Thank you for reading my long-winded intro!

~Cindy

 

Login or register to post replies.

DianaD's picture
Replies 6
Last reply 8/15/2015 - 8:48pm

Waiting for biosy results over a weekend is the pitts!  I found this information about why biopsies can take so long: 

 

What happens to the skin sample after the biopsy is removed?

After the biopsy, the skin sample is fixed in special solution, and thin sections of the tissue are cut and placed on microscope slides. The slides are stained for examination by a doctor (usually a dermatologist or pathologist). Sometimes specialized stains are used to examine for antibodies, immune proteins, and other markers of certain diseases. Initial routine biopsy results can be obtained in 48 hours or less, while specialized staining techniques can require a much longer time until final results are available.
I had the mole on my back removed this past Monday at the University of Chicago.  The doctor told me that a dermopatholgist would look at it the next day, but that it could take up to two weeks for me to receive the pathology report. 
Separately, I've just been diagnosed with liver disease, of unkown cause.  I'm flying to Chicaog again on Monday, to see a liver specialist at the University of Chicago, on Tuesday morning.  
I'm hoping that it's not the worst case scenario, i.e., melanoma with mets to the liver. 
Although I live in Ann Arbor, Michigan, which is home to the University of Michigan Health System, I was able to get appointments for both the biopsy and the liver consultation more quickly at the University of Chicago.  I'll use the U of M appointments for second opinions. 

DianaD

Login or register to post replies.

Polymath's picture
Replies 9
Last reply 8/15/2015 - 4:49pm

I don't recall this topic coming up and have always had my suspicions.  Like Artie, I had every side-effect possible in the extreme when on my first drug therapy Zelboraf.  It was a horrendous experience but my goodness, was it effective.  My tumors, several subcutaneous seemed to melt away in what was days, not weeks.  But after progressing in just three months, Taf/mek combo, then Yervoy, then Keytruda all were easy to tolerate, and (lucky me) had few if any side-effects at all.  But all these were completely ineffective (unlucky me), and now I'm in a clinical trial having exhausted all FDA approved (insurance covered) treatments.

Has anyone else noticed a correlation between side effects, and the effectiveness of treatment or is my case seem unique?

Login or register to post replies.

Pages