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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Jamietk's picture
Replies 4
Last reply 6/8/2012 - 7:14pm
Replies by: Cindy33, Jamietk, deardad

My surgical onc's PA at MDA told me he thought the red dots were prob just hemangiomas but certainly recommended a trip to the derm. Saw the first derm that could get me in, which was not my derm. She was not concerned about the red dots. Said they were just burst blood vessels, prob from injuring my arm (although my surg on PA thought not likely from trauma). In any event, neither are concerned, so I am not either. The derm did find a mole on my left side that she felt was likely mild to moderately dysplastic and wanted to watch it for now and biopsy it at some point. She did not want to biopsy it yet because she did not want to scar me any sooner than necessary. So I said let's go ahead and do that now, I don't like watch and wait if you think ultimately you're wanting a biopsy. She reluctantly agreed, but refused to do a punch. She would only do a shave. I respectfully declined a shave and requested a punch. She went on to tell me she will not do a punch because she is all about preserving the skin and minimizing scarring and punches scar too much. She did agree to set up an appointment for an excision.  She then commented on how bad my wle scar looked for being 7 years out, as well as other biopsies and blemishes on my skin, including my stretch marks. She said I did not have good skin and a punch would scar me too much. It was that point that I no-so-respectfully advised her I was 41 years old, weighed 183 pounds, and have had melanoma. A scar on the left side of my torso that no one but I would see was the least of my concerns. They set me up with an appt to excise it, but 5 minutes down the road I called and cancelled and asked to have my regular derm call me. This woman was just too concerned about the scars and not my health. Granted, maybe a mild to moderately severe mole at this time is not urgent for a biopsy, but she just went on and on about how shaves were so much better cosmetically. That was a waste of 2 hours I'll never get back.

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rrrule32's picture
Replies 4
Last reply 8/9/2012 - 3:42pm

Hello All,

My fiance, Kaitlyn, is 23 years old and has Stage 4 melanoma.  It has moved to her brain.  She starts radiation tomorrow.  They are doing a type of focused radiation, I don't think it's SRS or Gamma Knife or Cyber Knife, but they have this new machine that, as it's giving her whole brain radiation, when it gets to her brain mets, it will stop and dosage will increase.

I'm wondering, people in Kaitlyn's situation, do you have any advice for treatments?  Anything that worked for you?  I'm trying to get our oncologist to give her her last dose of Yervoy.  She had her first 3 doses, and they started working on her body.  Have any of you ever heard of Mannitol?  It's a natural compound that opens up the arteries to the brain and also shrinks the endothelial cells that block foreign agents to the brain.  I'm thinking if Kait were to take Mannitol before receiving any kind of treatment, it would be able to reach the brain.  Anyone else heard of this?  Her oncologist right now doesn't want to give her her last dose of Yervoy because he thinks it could counteract with the radiation.

Anyone ever heard of Hemp Oil from the famous Rick Simpson?  Not hemp seed oil, but hemp oil.

Any advice?  It would be appreciated.

Thank you,

Travis

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youri hasper's picture
Replies 5
Last reply 6/11/2012 - 6:15am

Hello everyone,

My name is Youri and I live in the Netherlands.
My father has been sick for a long time and after succesfull radiation therapies, my fathers melanoma's were stable for over a year. In the pas couple of months the melanoma's started growing again. Radiation and chemo didn't work this time. 

We heard about a new treatment, called R05185426, which possibly would lead to stabilisation, or even shrinking of the melanoma's. In the Netherlands this treatment is still in the experimental stage. An entrance requirement is that the melanoma's above the shoulders are stable. Unfortunately my fathers aren't. Yesterday the doctor told us that my father is excluded from the new treatment. 

My question is, whether in other countries than the Netherland, the treatment can be performed or the new chemo can be optained on the free market. 
We are almost out of hope so if you know anything, please reply, and help us.

With kind regards,

Youri Hasper and family

 

Carpe Diem

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Hello everyone,

My name is Youri and I live in the Netherlands.
My father has been sick for a long time and after succesfull radiation therapies, my fathers melanoma's were stable for over a year. In the pas couple of months the melanoma's started growing again. Radiation and chemo didn't work this time. 

We heard about a new treatment, called R05185426, which possibly would lead to stabilisation, or even shrinking of the melanoma's. In the Netherlands this treatment is still in the experimental stage. An entrance requirement is that the melanoma's above the shoulders are stable. Unfortunately my fathers aren't. Yesterday the doctor told us that my father is excluded from the new treatment. 

My question is, whether in other countries than the Netherland, the treatment can be performed or the new chemo can be optained on the free market. 
We are almost out of hope so if you know anything, please reply, and help us.

With kind regards,

Youri Hasper and family

 

Carpe Diem

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jag's picture
Replies 14
Last reply 6/24/2012 - 3:10pm

I CANNOT THINK OF ANYBODY WHO SURVIVED AUTOLOGOUS T-CELL THERAPY AT THE NIH.

 INVOLVING DR ROSENBERG.  I CAN THINK OF A LOT OF GOOD PEOPLE WHO HAVE PASSED ON DUE TO IT.

IT DOESN'T LOOK ANY ARE LEFT, BUT IF YOU ARE CONSIDERING THIS AS AN OPTION, DON'T DO IT.

Insert Generic Inspirational Motto Here

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Good news for anyone lucky enough to have been in Dr. O'Days care.  He is back practicing at Beverly Hills Cancer Center.  8900 Wilshire Blvd., Beverly Hills, CA.  His phone number is 310) 432-8900.  His email address is SODay@BHCancerCenter.com.

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MeNDave's picture
Replies 14
Last reply 6/18/2012 - 7:21am

Dave had his first set of scans since starting carbo/taxol.  He also had a gamma knife follow up brain MRI.  Brain lesions that were treated are shrinking.  They did identify a 1-2 mm tiny spot on the opposite side which they are choosing to just monitor.

The scans showed improvement in the liver, lungs, spleen, and sub-q's, with the exception of one node in his right axillary which increased slightly.  The liver actually seen an 80% overall reduction in mets, with many not seen anymore.  Same with the spleen.  The down side is that they do see a new lesion in his hip bone/pelvic area.  He also had lesions in his spine, but those appear to be responding to the chemo.  He is having severe pain in his right hand which they believe is due to one of the tumors either in his axillary area or his spine pressing on a nerve.  Pain meds (methadone, oxy, gabapantin, dilaudid) aren't helping, so he is going to start radiation next Monday to the lower spine and armpit to see if it relieves the pain.  His LDH has gone from 8000 when he was in the hospital to 698 - which is just outside the upper limits of normal. 

Given that we KNOW the carbo/taxol is working, he is going to do two more rounds, and then restage.  He could switch to IPI then, or see if he qualifies for one of the anti-pd1 trials. 

All in all, we'll take it!!

Best wishes to all of you,

 

Maria

Don't ever, EVER, give up!

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Anonymous's picture
Anonymous
Replies 9
Last reply 6/8/2012 - 7:27pm
Replies by: Cindy33, Janner, jaredmiller16, natasha, Anonymous, EmilyandMike

After my diagnosis, I was at the derm every three months and now I am at the derm every six.  However, while I am pregnant, he wants to see me every three months. I was there right before delivering my son last week.

I noticed while nursing that I have a new mole under my breast. Lets just say this mole is not a result of sun exposure :) Because of the odd place, I do not think the derm checked this mole in my last visit. Its not visitable on our pictures and I do not remember him looking there..

Needless to say, I am not to worried about it. Its a reddish color, perfectly symmetrical, and has the texture of a skin tag. It looks nothing like what my mel did.

But, I read on a website that any new mole should be reported to the derm immediately regardless of what it looks like. Although this is good advice, I am wondering since I am pretty educated on mel if this is necessary since I go to the derm as much as I do. I get new moles all the time and I would be in his office at least once a month if I followed this advice. I will do whatever do save my life, but then again, I do not want to drive my derm crazy in the meantime. What do you all do?

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Replies by: alpineartist, POW

I like that there is another new option for those considering Interferon...

From the press release: http://www.polynoma.com/docs/PolynomaCommencesPhaseIIIMelanomaVaccineCli...

Polynoma’s melanoma vaccine has an extensive clinical history, having been safely administered to over 650 patients. The current Phase III study of POL 103A has been initiated based on the results of two randomized, placebo-controlled Phase II trials that demonstrated strong efficacy in terms of significantly improved Recurrence-free survival (“RFS”) and overall survival (“OS”). Additionally, POL 103A has exhibited an excellent safety profile.
Dr. Chiplin commented, “POL 103A’s strong safety profile and tolerability have a significant advantage over Interferon, which has limited efficacy and poor tolerability despite its being the current standard of care for resected Stage IIb – III melanoma patients, for whom there are currently no other alternatives.”

FROM CLINICALTRIALS.GOV

http://www.clinicaltrials.gov/ct2/show/NCT01546571?term=POL+103&rank=1

Eligibility:

Ages Eligible for Study:      18 Years to 75 Years
Inclusion Criteria:
Histologically confirmed Stage IIb, IIc, III melanoma
Surgical resection within 90 days of first dosing
Persons with positive sentinel nodes must have a complete lymphadenectomy
ECOG performance status 0 or 1

Exclusion Criteria:
Any prior melanoma treatment other than surgery or regional irradiation
Diagnosis of non-cutaneous melanoma or melanoma with unknown primary origin
Use of biologic response modifiers within 60 days of first dosing
Subjects with history of other malignancy within past 5 years (with exceptions)

Our experience with melanoma: http://emandmichael.wordpress.com/

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Jamietk's picture
Replies 3
Last reply 6/7/2012 - 11:35am
Replies by: Jamietk, Janner, DonW

Hello all,

I have not posted in a long long time. I do check in occasionally, but have really tried my best to put mel behind me. I am stage IIA, coming up on my 7 year anniversary in a few months. Today I noticed 2 teeny tiny red dots. One of them is exactly 1/2 inch from my wle on my arm. The other is exactly 1 inch from my wle on my arm. One looks/feels like it is on top of the skin. I can't tell on the other one. I'm a little worried. Obviously I'll get in with the derm as quick as possible. I did injur my arm this weekend. I had my car door open and turned to walk away and had not cleared the door. I jammed my arm right where my wle was and it did swell and is very tendor and sore still. But I don't think that would cause 2 red dots, would it? Maybe brusing, but not dots. Any thoughts on this? Thanks for the input.

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deardad's picture
Replies 4
Last reply 6/7/2012 - 11:39pm

So here we are on the second round of Temador not knowing whether it is working or not. From the visible mets it doesn't look very promising.

He just finished 5 rounds of WBR which really for him he said was the hardest treatment so far. Ended up in the hospital to check for a suspected blood clot on his lung due a pain in that area but fortunately was ruled out. No explanation was given, they just gave him oxycodene for the pain.

He is more tired, but still up and about (I am hoping this is just the treatments and not the disease). Where to next? Who knows. Feeling quite sad for the what the future holds and I only hope that the WBR and temador can stabilise things enough to get him on another trial. We have lost so many lately and the reality is far to hard for me to contemplate at the moment. I am very close to my dad and cannot imagine him not here.

Nahmi

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Hello everyone.  I am reading many posts on this forum and wondering if any Stage IV patients/friends are on chemo or are you all just on clinical trials for your treatment.my brother is stage IV.  Thank god his brain and liver are clear but lung and G.I tract are involved.  He is finishing temodor and Abraxane. Had yervoy 12-2011. I don't see many of you on chemo in genral...except IL.  I don't see many on his chemo..temodor, abraxane

Many of you are on trials.  i would like him to consider Anti-PD1 but "time is of the Essence " as they say with melanoma.  time is not what you have when you are stage IV.  One day you have no mets to the brain and then the next few weeks...there it is.   How do you risk participating in a trial when you may have a placebo and not the real deal..and then it is too late...I think that I am missing info or mis-informed.  Appreciate any your advice.

Susan NY

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Hello All -

My Mom's first set of scans since toe amputation, groin lymph node disection (5 positive nodes), consultations with Hodi (Dana Farber) / Chapman (MSK) and radiation treatment are on Sunday the 10th.  This is almost 5 months after her first scanned used for staging (she was stage 3c).

Can you all think positive thoughts for her?  I am confident it will come back NED but I really appreciate all the positive vibes.

Thank you!!

Elizabeth

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noisy77's picture
Replies 4
Last reply 6/8/2012 - 7:32pm
Replies by: Anonymous, susanr, noisy77, aldakota22

Hello All -

My Mom's first set of scans since toe amputation, groin lymph node disection (5 positive nodes), consultations with Hodi (Dana Farber) / Chapman (MSK) and radiation treatment are on Sunday the 10th.  This is almost 5 months after her first scanned used for staging (she was stage 3c).

Can you all think positive thoughts for her?  I am confident it will come back NED but I really appreciate all the positive vibes.

Thank you!!

Elizabeth

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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