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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ValinMtl's picture
Replies 6
Last reply 9/17/2010 - 1:28pm

Long day at the Royal Vic in Montreal.  Out of the house at 5:30 - we're out in the country, blood work at 8 am, meeting with doctor and then the BIG WAIT!  Booked for 11 am but drug was ready only at noon, then unfortunately no beds available in the motel (5-bed room rather than the room with chairs) until 2:30 pm, 1 1/2 treatment then 1 hour...Finally left at 5:30 pm....but who's complaining.  I have had my first round of ipi.....YAHOO!  It went very well no side effects there.  Had a headache this morning, but very leg with the 100 plus little monsters had a very tingly feeling all night.  I like to think it's ipi doing it's work!!! 

Met up with Sharyn and we had hoped to have coffee together with our hubbies Jim and Bill.  Alas, the hospital kept us both busy running around so we never got the chance, only touched base briefly.  Sharyn starts her treatment next Thursday - we're finally where we want to be!!   Val

Live Laugh Love Nothing is worth more than this day!

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Sherron's picture
Replies 7
Last reply 9/17/2010 - 12:02pm

Hi everyone,

Jim is having lots of stomach problems, and of course, as of yet, has not agreed to go to the doctor.  He is in pain, having bowel issues, and mainly very uncomfortable.  He is not eating much.  He looks pale.  He, of course, tells me he must have some kind of virus.  I don't think so.  He now a lymph node swollen on the left side in front of his ear.  Another  3 lumps on the left side of his back.  1 on his left side.   And the right side, originial Mel, that lymph node is huge.  He has one on the right side of back...and lump in right side of chest.  None of these are giving him any problems. HELP, PLEASE.

Does anyone have any experience with this?  Thanking you in advance for any responses to this. 

Take Care,

Sherron, wife to Jim

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MaryD's picture
Replies 31
Last reply 9/25/2010 - 3:03pm

I feel very fortunate to say that the clear scan report I received today marks the two year anniversay since my last recurrence.  Even more significant is that it's 3 years since I progressed to stage IV via a lung met with no further incidents internally.

When I was diagnosed almost 10 years ago, I could never have imagined looking ahead this far and believe I would still be here.  But 5 recurrences later coupled with INF, vaccine trial, radiation, Ipi, and pulsed IL-2,  here I am feeling very humbled and blessed.

Over the years, this board has been a lifeline to share  the best and worst case scenarios of this devastating disease,  laughter and tears, and most of all . . amazing .friendships.  This is a difficult journey to be sure, but I can attest to the fact there is hope out there and the prospect of living with the beast as a manageable disease.

And now .. .it's time for a happy dance!!  :)  :)


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amybusby's picture
Replies 20
Last reply 9/18/2010 - 7:29pm

A mixed bag, as usual.  The leptomeningial mets (around the brain) are stable, maybe even somewhat better.  I had no problems with WBR or with the temodar.  No idea yet if my spinal fluid is still clear or not, we'll check that next week when I go in for another intrathecial IL2 dose in my head port.

It's been a long time since I last had the GSK BRAF inhibitor (end of May), so we've been expecting at some point  that the effects would wear off.  I've had some growth in the subq system, and the lymph nodes, but the main problem is the growth of bone mets.  I think all were there previously but now are growing & compromising the bones more.  I have a pretty substantial right femer met that's come on strong recently in terms of pain, so I knew something was wrong there.  It's going to need immediate attention.  So the plan is to try for the next few days to get my hands on some BRAF inhib. drug somehow.  I am open to all suggestions, companies, trials, compassionate use plans, inside information, etc.

Assuming we can't do that (a fairly likely assumption) Dr. Papa recommends radiation for the femer & a couple of spinal mets.  The spinal ones aren't hurting yet but as long as we're there....  (radiation would go along again with another round of radiation).

I'm going on Thursday for an infusion of Zometa - anyone done that?  Anything I should watch out for?  (to try to build bone density)

So it's discouraging of course.  It torments Dennis to know there is something out there is practically assured of controlling my systemic disease now that we have the CNS disease stable.  My quick and almost complete response should make me a terrific candidate for other cohorts of the BRAF trials that allow CNS disease, or for compassionate use - you'd think.  But then again we all know rational, reasonable thought processes have zero to do with FDA procedures and / or drug manufacturer business decisions.

So right now I am focusing on staying off my leg and making sure there are no bone breaks im future.  We all know how great I am about letting others do stuff for me (and letting them do it their own way!) so this should be fun.  But I have agreed to do my best. 



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sofiaeli's picture
Replies 4
Last reply 12/15/2014 - 10:40pm

Hi everyone.

My husband is currently fighting stage IV melanoma and is about to enter the TIL study at NIH.  Anyone have any experience with it? 



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Nicky's picture
Replies 5
Last reply 9/14/2010 - 10:56pm
Replies by: washoegal, Pekoe, Fen, Nicky

Hi everyone

I've just been on State Television in Australia.  I was diagnosed with Stage III melanoma 10 years ago and I am currently NED.  I was treated with radiation therapy, my patnet is under "nicky".  I'm not financially well off but this being my 10 year NED anniversay, and having just moved to Brisbane, Australia, I decided to scrape up all the coins I could find and donated $100 to the Princess Alexander Hospital  Research Foundation in Brisbane who are doing ground breaking work in Cancer research for melanoma and other cancers including the vaccination program by Dr Fraser with the Giardisal vaccine for cervical cancer.

Anyway, if you donated $5.00 you would get a plastic duck with a number on it and it would be raced down the Brisbane River.  The first prize was a toyota yaris and out of 21,000 ducks worth of donations from people, my duck came first, and I am so excited, it is unbelievable.

So here is the interview and also a little bit more of a press release to any one contributed below it.  


"When going Quackers really saves lives

Thank you so much for supporting the PA Research Foundation for the Great Brisbane Duck Race.  The sale of over 21,000 ducks has raised in excess of $100,000 for cancer research which will literally helps save lives.  This is a record achievement for the event and you have helped our goal become a reality.  Thank you.
The Winners are:
1st Place: 19544 Nicola from Windsor, QLD
2nd Place:13842 Raymond from Richlands, QLD
The winner of the Great Brisbane Duck Race Nicola from Windsor said “I owe my life to the PA, the least I could do when I heard about the event was to buy a Flotilla of ducks to show my support, I never thought I would win”.
Nicola was almost in tears when we called her to tell her the good news and she said the timing could not have been any better as her old car was about to pack it in.
Nicola owes her life to a PA funded research project headed up at the PA Hospital by Professor Bryan Burmeister. She has been part of the special 17 year international project which is the first of its kind to prove the effectiveness of radiation therapy in curing melanoma.  It is now benefiting patients across the globe including Nicola.
“I am a lucky duck in more ways than one, thank you so much to the PA and the invaluable research that they have helped make possible.” She said
The funds raised from Great Brisbane Duck Race will go to support cancer research in the areas of prostate cancer, skin cancer, leukaemia and breast cancer research.
There are more projects that need our funding than we can support so money raised like this is just wonderful.  Thank you so much.
All the live action and photos of the event will be up on the website later this week.
Many thanks from Quackers and the PA Research Foundation Team. 

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 September 29 2010 at 7:00pm to 8:00 pm

Everything You Want to Know about B-raf, MEK and other Targeted Therapies for Melanoma
PART 2 Webinar with Dr. Flaherty and Dr. Schwartz

) 29th @ 7:00pm(EST)

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Nancy's picture
Replies 6
Last reply 9/14/2010 - 10:27pm
Replies by: Charlie S, Kevin from Atlanta, lhaley, rj, jag, Anonymous

The day is drawing near, at least I think so, when difficult things must be answered,  Charlie S. I have printed out nearly everthing you wrote over the past 2 years, Jerry Sullivan, you've been a welcome guest to us, Tim in Fl = Jill & Eric, Kevin in Atl., michel in FL. Betsy, Ellis, who now suffers, and Sharyon in Reno, linda, so many more,   but my writing is this- I don't think Buddy has a chance one of overcoming this melanma thing.   He still wants to get the 4th treatment of IPI.  He missed the 3rd injection, due to the fact he fell, was hospitilized with brain swelling, now in rehab center on 4mg steroids 3 x day,, The doctor is now reducing Steroids to 4mg in morning and night, and 2 in afternoon.  He must be off the 2 in afternoon to be allowed to get the IPPI....His tumors were getting smaller, but now there are more, and the others are growing,,..,.He was not allowed to get treatment @3 due to the steroids.   So, its now time for #4- who knows if he'll be allowed to take it.  He tried so hard in physical theraphy to get strong..The good fairies at the rehab said they wanted to discuss after care and hospice but I told him he was looking  forward to getting this over and be on his way to the orchard, am I the one to mention this to him,  or should I leave this to higher ups...I don't want to give up, but it seems a time is around the corner when something must be said === his torso ha numerous tumors, scan showed multiply spots on brain, its in his liver, both lungs--/////////////// If anyone sees an unused miracle laying around, send it our way.... How can I prepare him for the worst?   I've tried to stay up and heed advise given, but I must have not paid attention somewhere, or messed up, I cannot be the bearer of bad news, when I've tried to be so positive.

Hes had the Interferon, Temador, IL-2, Gamma Knife, WBR, the brain surgery, trying IPPI ===should hehave another brain surgery  if they find more tumors in the old tumor beds, try gamma knife again, should he try Taxol ETC --He was not tested for B-RAF, even tho I asked for it..

All in all, his doctor, Dr. William Sharfman at Johns Hopkins i, I believe, one of the best in melanma, He was one of the keynote speakers at Chicago a few months ago...

Thinking of all the good friends I've made on my journey and thanking each one of them for smothing out that road--hopefully, someone, somewhere will be there fo you,...Who ever thought Jerry Ellis could ride a horse:::  or even try!!! He has to be a redneck~!

Nancy - origianal WV gal (must be a redneck too)

Good Luck Everyone = Luv ya





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Anonymous's picture
Replies 9
Last reply 9/16/2010 - 1:08am

I am looking for information from other people who have had mucosal melenoma. Do to the fact that this is a rare aggressive melonoma I would like to find out  about any level of successful treatments. I have completed 25 radiation treatments with the disease growing right through the treatments. I have tried ipi and temodar with continued growth. I am now on Carboplatin &Taxol and Avastin. Will do imaging in about 5 weeks to see if this is working. I have been to MD Anderson, Mayo Clinic Jacksonville and Moffitt Cancer Center in Tampa. I would just like to hear someone has found something to slow this stuff down or reversed it  to ned.Thanks in advance for taking the time to respond.

It's agood life if you don't weaken--- borrowed from a friend

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bri11iance's picture
Replies 1
Last reply 9/13/2010 - 9:31pm
Replies by: Charlie S

I received an incorrect bill from a local pathology lab and called their large national billing service today.  I was put on hold and - to my delightful surprise - listened to a recording of information about the dangers and prevalence of melanoma and about sun safety.  I was quite impressed with the wide audience this simple strategy will reach and also pleased to be spared from the usual elevator music or sales pitch.

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emilypen's picture
Replies 6
Last reply 9/16/2010 - 11:28am

Hi all,

So met with the oncologist today and the new CT scan shows very minimal growth on the one tumour they haven't radiated. It's the one they're leaving as is in order to guage how the trial drugs work. Is that normal? Do tumours just slow down sometimes? The radiated areas show scarring but no new cancer anywhere. PET scan results later this week.

All the tests are done, and my husband starts the trial on Wednesday.

Has to spend the 24 hours in the hospital in order to make sure he has no bad reactions to the drug and they'll take his blood every hour to check for dispersion rates.

Our fingers are crossed. I'll keep you posted.





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Charlie S's picture
Replies 2
Last reply 9/13/2010 - 9:20pm
Replies by: Anonymous, washoegal

There are several hospice locations in Reno and due to HIPPA rules, it is difficult to find her.  Does anyone know which Hospice she is at or her last name?


Charlie S

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Lori C's picture
Replies 6
Last reply 9/19/2010 - 5:22am
Replies by: Janet2, James from Sydney, Lori C, Anonymous, Jackie W, jag

Will is doing okay - going for 4th chemo next week.  All visible lesions very small, flat, etc.  However, he is SO tired.    He's on cisplatin and taxol.  Is this pretty normal?  Pain is much better.  But I'm worried - of course.  He's just so worn out.

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Will is doing okay - going for 4th chemo next week.  All visible lesions very small, flat, etc.  However, he is SO tired.    He's on cisplatin and taxol.  Is this pretty normal?  Pain is much better.  But I'm worried - of course.  He's just so worn out.

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