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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Anonymous's picture
Anonymous
Replies 3
Last reply 8/7/2014 - 7:25am
Replies by: Ginger8888, Anonymous

People with moderate-to-severe Vitamin D deficiencies are significantly more likely to develop Alzheimer's disease or other forms of dementia 

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Anonymous's picture
Replies 3
Last reply 8/8/2014 - 7:51pm
Replies by: DZnDef, ecc26, Anonymous

Does anyone have any inforamtion about being able to drive after having gamma knife radiation surgery for brain mets? Links to webistes appreciated.

I am not finding much online about this and need to ask a doctor some questions.

There is no history of seizures, headaches...and more than one tumor treated. So far, there are no new tumors. There was a reocurance and treatment 6 months after the first treatment.  But so far no additional turmors have been found.

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maradams's picture
Replies 5
Last reply 8/6/2014 - 4:56pm

My husband was diagnosed with melanoma last October, although given the depth and size of the tumor, he proabably had it for quite some time.    It was underneath his hair on his scalp.   He had the tumor removed and had a skin graft and underwent interferon treatments and Sylatron.   He had a PET Scan in April and they found tiny tumors in his left lung.    So in May and June he underwent Hi Dose interlueukin 2 (two rounds--13/14 the first time and 11/14 the second time).   He had a PET Scan on Thursday and it showed the tumors grew slightly.    Now the doctor wants him to undergo Yervoy treatments starting next Tuesday. 

My husband is feeling very frustrated.   We never got a second opinion, we went to Hershey Medical Center because it was close.     I tried making different appointments with different doctors from other hospitals (Johns Hopkins, U of PA, Jefferson, etc.) but always had to cancel because it takes so long to get an appointment and it never failed that those appointments fell on a day he was undergoing a treatment or a PET Scan.    My husband wants to try to go someplace else, however, he doesn't want to waste time by not going to the treatment next week.    I am at a loss.    I want the best for my husband, but I don't know where to go or what to do.    I called Sloan Kettering, but they told me that since he has already started treatments somewhere, they will not see him.   

Any suggestions would be welcome.

 

 

 

MSA

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vicuk's picture
Replies 6
Last reply 8/11/2014 - 5:37am

My friend Helen has just had results from latest scan and all tumours either decayed or too small to measure and are being held stable. She has been been on Dab/Tram trial for 2 years and 1 month and was initially given 6 months to live.

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Patina's picture
Replies 4
Last reply 8/6/2014 - 4:13pm

Hi Everyone,

We got a second round of good news after treatment for my Mom.  She's had really good results with both ipi/Yervoy and gamma knife radiation so far.  Today her doctor reported that she had no new brain mets and that all the CT scans look terrific.  - The 18 tumors on her scalp are pretty much gone. Just a speck left really. When this started I'd estimate that if you had to measure the total volume of the masses on her head and neck that it would be about 1/6 of a cup. Maybe more...   - I could have strangled her when I found out what was going on. She didn't tell me! Stubborn lady!

The long and short of it is that this is another story of someone who's had a great response and things looked really grim a few times.  

Melanoma treatment has come a long way in the last few years and is only getting better. I hope in my lifetime melanoma won't be so hard to fight and that there is a cure soon. - Baring that, longterm treatment and management that give everyone the quality of life they want...

 

HISTORY:

My Mom was diagnosed in November of 2013 (age 77) and after seeing 4 specialists (one of which diagnosed her with brain mets that a radiologist "overlooked") and thinking about the options she opted to go with gamma knife radiation and ipi 4 days later.  

In short she had: 2 infusions, got colitis and thrush, had a few hospitalizations due to colitis, finally got the 3rd infusion, got colitis again and then a new radiologist (3rd) treated 16 new tumors in April...   

---Terrific tretment at USC in Los Angeles with Dr. Wong and Dr. Chang.  And many thanks to Dr. Peter Bosoberg at the Los Angeles Clinic. - He found the undiagnosed brain mets. 

 

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DZnDef's picture
Replies 2
Last reply 8/7/2014 - 12:25am
Replies by: DZnDef, Gene_S

Hi all,

This may seem off topic, but I am really trying to limit my exposure to anything that could be harmful to my skin.  Is anyone aware of any skin products and cosmetics that contain only natural ingredients?  I haven't used lotion or make-up for a while now since I realize my skin and body are absorbing whatever I put on it.  I would love to learn about a natural/non-toxic healthy product line.

Thanks in advance,

Maggie

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brittanyx's picture
Replies 8
Last reply 8/7/2014 - 2:07pm

I'm starting interferon Monday and it bothers me reading so much negative stuff about it on here and I just would like to hear the positive. So, I was wondering if anyone has done interferon and is NED or has been NED for awhile now or knows anyone who is.

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jej's picture
Replies 7
Last reply 8/7/2014 - 1:29am
Replies by: kylez, DZnDef, jej, Patina

I was wondering If anyone could give me some advice?

My Dad was recently diagnosed with melanoma in January this year. He had a wide excision of a mole on his back which was > 4mm depth. A CT scan showed axillary lymph node spread and he went on to having alymph node dissection in April this year. Seven of the thirty nodes were positive for melanoma and was due to have radiotherapy in June but a pre-arranged CT scan done a couple of days prior to starting radiotherapy showed up new nodules in both lungs which the radiologist and oncologist are convinced are melanoma but say that all nodules are too small to biospy. They both suggested leaving alone and scanning in 1 month which has just been done. They then said if the nodules had grown they would start vemurafenib. Dad has his scan and went to see the oncologist yesterday. The nodules have slightly increased in size in some and not in others. They have again suggested scanning in 6 weeks time and again starting vemurafenib if they have grown or sooner if Dad becomes symptomatic.  At present Dad is not symptomatic at all, in fact he feels better than he has for a long time. Does this seem reasonable? ?..

My Dad is 72yrs old and has had a kidney transplant 2yrs ago. His Transplant team have stopped 1 of his immunosuppressive drugs and halfed the other with no issue to his kidney function. The oncologist is a melanoma specialist in Manchester (we live in the uk) and is reluctant to start ipilimumab at the moment but will do in the future when needs to.

I really don't know where to start. 

 

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Brigitte's picture
Replies 2
Last reply 8/5/2014 - 6:51pm
Replies by: Brigitte, Janner

I had a shave biopsy a few weeks ago with the diagnoise being a compound nevus with dysplastic features.  The biopsy also said that junctional changes are focally advanced, perhaps indicative of progression, such that a conservative excision is recomended. I have an appointment to get it done next week. My question is, since my shave biopsy didn't detect melinoma am I in the clear ? Can a shave biopsy give a false negative or miss it and is there a chance this biopsy may detect it? Thank you for your answers. Im trying not to be nervous. 

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ray39's picture
Replies 2
Last reply 8/5/2014 - 7:52pm
Replies by: DZnDef, Kdw2012

I've had a mole on my stomach forever but recently I pulled some loose skin off it and the middle scabbed over. It is about 4mm and black in the middle with brown edges. My dermatologist looked at it during my last appointment and didn't say anything about it. That was about 6 weeks ago. I've moved my sept appt up to aug 18.  Could he have missed something?  It has me worried. 

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Happy_girl's picture
Replies 9
Last reply 8/7/2014 - 9:59pm

I'm looking for opinions.... Sloan Kettering or Dana Farber?  Is one better than the other?  What are your opinions?

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Kdw2012's picture
Replies 5
Last reply 8/6/2014 - 8:35pm

Do you know if having a high mitotic rate plays a factor in recurrence or aggressiveness of tumors?

What has been your experience?  

My melanomas mitotic rate was 15 but It was also ulcerated

thank you

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curious12's picture
Replies 2
Last reply 8/9/2014 - 6:03pm
Replies by: Treadlightly, Janner

Hi everyone,

I posted recently about my son's mystery bump on his forehead. They think it's a cyst (can be felt under the skin) but will remove if it doesn't resolve. The new dark spot on his heel (about 1mm) she thinks looks atypical with dermatoscope so we will remove. She said a punch biopsy on the heel would be difficult and recommened a "scoop"... thoughts on this? This is for my 9 year old son. I'm normally adamant about punches, but I can see how it would be hard to keep together on his heel. She thinks atypical, not mel, but of course one never knows! Thanks!

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Happy_girl's picture
Replies 4
Last reply 8/5/2014 - 12:01am
Replies by: FayFighter, SABKLYN, Anonymous

Does anyone have an opinion about dr coit at memorial Sloan Kettering?

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cc's picture
Replies 2
Last reply 8/4/2014 - 4:14pm
Replies by: cc, Janner

Good morning, 

   My dermatologist called on Friday morning stating that a  mole that I had removed last week from my lower leg was found to be positive for a "very early" melanoma.  Of course, I wasn't prepared for that and don't think I asked the right questions.  I did ask him how he knew that it was very early, and he said that that was what the pathology report stated.  He then told me to come cack in on Thursday of this week to his office to have it removed.  i have been calling the office to try to get the data from the report, but have not  heard back.  From reading around on this site, I think that he must mean that it is in situ.  My question is, do I try to schedule an appointment with a melonoma specialist, even if it is a "very early" melanoma?  I am not far from the University of Pennsylvania, and would go there, but I am not sure if  I need a specialist for an early melanoma.

 

Thanks!

  CC

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