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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Bruce Davis's picture
Replies 3
Last reply 9/12/2013 - 8:31pm

Have been on zelboraf 24 months the middle of September, 4 pills in morning and 4 @ night.
I'm fortunate enough to work 40 Hours a week in the Physical Therapy field.
Over the last couple of months I've been able to work out at the Gym 1 day per week. The last few weeks I' ve been able to Bike f8 to 26 miles. Feel really tired after theese sessions. I'm sure this will benefit
me physically in the future. The nodules in lungs shrunk greatly after 6 weeks of starting zelboraf.
Happy to be alive during this fight against melanoma.
Bruce Davis

Presently it's "Don't give up."

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Lori Stoen's picture
Replies 4
Last reply 9/15/2013 - 2:09pm
Replies by: Stef, NYKaren, Lori Stoen, Tina D

Hi, I am looking for anyone with ideas to help my dad with the itching from the yervoy treatments. He had his 2nd one on sept 6th and started with the ithching on the first treatment. There was a 6week gap between the two as dad is having bleeding in his small intestines, biopsy shows melanoma causing it... back and forth with blood transfusions. He is really feeling low and down and out. Goes from bed to chair and back to bed, breathing is getting difficult and back hurts to touch it. I can see more lessions popping out on his face as well. I hope and pray things start to turn around, he is getting so depressed also. All I want is to help him with anything possible... I know it sounds like the least of the problems with the itching but he told me he sat in the chair from 2am till 7am going insane with itching. We have sarna lotion, gold bond, benadryl spray and pills,... any other suggestions? Thats about all the Dr.s told us to try just thought maybe someone came up with a better idea.. Thanks so much , Lori 

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casagrayson's picture
Replies 19
Last reply 10/20/2013 - 4:40pm

I thought it might be helpful for the admins if we had one thread where we could post all the little issues we find as we navigate the new site.  I wrote about one in the "new site" thread, but I think it got buried.  If you have an issue, reply to this thread and use the next number.   Hopefully that will keep it organized.  I'm pulling the first issue from another thread.

 

Susan

Strength and Courage,

Susan

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NYKaren's picture
Replies 8
Last reply 9/13/2013 - 2:04pm

Hi everyone,

I had my two appointments today, and they both went well.

I was apprehensive about driving into NYC on 9/11 and happy to be back home. I pray the day continues without incident.

Saw Dr. Halpern at Sloan; the stuff he froze off was just skin tags and some follicle-type thingys.

Then proceeded to Dr. Pavlick at NYU. My labs are all good. (I remembered to drink a lot of water, kidneys, et al are fine. They are reducing Decadron from 12 to 8 mg./day, and I'm to call to see how I'm feeling on Friday. They looked inside my ear, for the first time since Zel stopped working, around May, they can see all the way to ear canal. There is still some Mel left down at the bottom of canal, but at least the head/neck surgeon isn't talking about cutting it off, and my hearing is at least 90% improved. I am finally allowed to go by railroad to take care of some personal stuff tomorrow, looking forward to that. Still no driving, next MRI is scheduled for 9/30, hopefully will be cleared by then.

That's my story, and I'm sticking to it!

Take care,
Karen

Don't Stop Believing

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Tina D's picture
Replies 12
Last reply 9/13/2013 - 6:51pm

I returned from Vanderbilt last night after my third PD1 infusion. Have been feeling pretty good over-all. I have a few days of fatigue abt 1 week after tx, but after a few days, I feel mostly normal. Have been swimming laps at the Y and even got to take our son zip-lining this past weekend! My labs are good with exception of thyroid. They did expect this may happen and once is settles out, I will likely be put on synthroid. Currently it is hyperactive, they then fully expect it to tank. No biggie in the big scheme of things. Sometime after my next infusion and before the 5th one, I will get scans.Hard to believe it is already time for that!! 

Just wanted to check in,

Tina

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bkinman's picture
Replies 3
Last reply 9/18/2013 - 1:17pm

I thought it used to ask if you wanted to be notified, but it didn't ask, and I am not recieving notifications in my email.  I looked through my account and profile and didn't find anything. Anyone know

Sorry for non-melanoma question and thanks in advance.

Becky K

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Pink's picture
Replies 5
Last reply 9/13/2013 - 8:14pm
Replies by: Anonymous, JerryfromFauq, NYKaren

Well I received my ILI at Moffitt on 9/5, it's quite a procedure. 1 1/2 hrs in Cath lab placing catheter and pic line and another 2 1/2 hrs in the OR. 5day hospital stay. In 12 weeks they will do a PET to see if it worked.

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JoshF's picture
Replies 9
Last reply 9/11/2013 - 7:30pm
Replies by: JoshF, Tina D, BrianP, NYKaren, aldakota22, Anonymous, JerryfromFauq

Received call on results of MRI today. Actually showed 2 lesions in cheek. According to Doc, Radiologist said it shows benign characteristics. I asked him what he felt and he said given history, it's a 50/50 chance of being melanoma. He also said it could be lymph node or scar tissue. So not having a definitive...they are going to do surgery to remove & biopsy. Obviously results will dictate next steps. I can't stop my head from spinning. Think I'm in trouble here.

Let's work for better treatments....for a cure!!!!

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JerryfromFauq's picture
Replies 7
Last reply 9/11/2013 - 9:45pm

Had my Scans yesterday. Still have the (approximately Innumerable) lung tumors at the same sizes and locations they have been at. Have a sore neck, told Onc that I thought a good massage would help this, that I didn't suspect it to be from my Mel. He felt the area and agreed (No nodes enlarging.) Reported a darking lump on the inside of my right shin. Three weeks ago it was large and sore. I waited to see if it would go away. I delayed reporting it to the Once since I had an appointment in three weeks. Figured would see what happened to determine if I should ask, before the appointment, for the scan to cover my leg. It has gone down much in size, is harder and has gotten darker. So waited to see the Onc first. My logic is that I suspect that It is a place I banged hard, (without knowing it at the time???) The Onc checked it and said they could do an FNA if it doesn't continue going down. For me to keep him informed. Fine with me, it's my decision as to what and when he will do what. (Cops pulled me over on the way home that night for a headlight that went out. Hopefully won't bang my leg while working on the car today!!)

I'm me, not a statistic. Praying to not be one for years yet.

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bkinman's picture
Replies 3
Last reply 9/11/2013 - 12:54pm
Replies by: NYKaren, bkinman

I have been having headache's since starting the Tafinlar. I know it is a side effect. Aanyone else experiece, and if so, what did you take/do to help? Changed me from Zelboraf to Tafinlar due to less toxicity, but I would rather have the joint pain (had gotten to where it was minimal)  that only hurts when I move and diarrhea than a constant headache. Ibuprofin and/or Lortab doesn't seem to help. Dr didn't offer anything and we were too busy talking about scans and pains in sides and back for me to remember to push him on it. This is my local oncologist who I seem to have to drive, not my Mel specialist. in TX 

 

Thanks,

Becky

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/10/2013 - 1:50pm
Replies by: JerryfromFauq, Tim--MRF

Just curious if the PatNet histories are still out there on the new site?

Luke 1:37

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    We are the "MELANOMA PATIENTS INFORMATION PAGE" community.   The history of the MPIP predates the formation of the MRF.  The MPIP is a Memorial to Jeff Patterson and his wife's sister, Cindy.
     The MRF does a great job of fund raising and supporting research for the fight against melanoma.  The MPIP is not a fund raising entity, we are a group of fellow sufferer's trying to help each other on a personal, compassionate and informational level.  We need the MRF's help, and the fact that the MRF recently began supporting the MPIP should be a benefit in their fund-raising.  The first new format  seemed to have forgotten the personal approach of the MPIP and concentrated more on the commercial fund raising side of the MRF.  After complaints and requsts the MPIP history information was included in the MRF write up

        Cindy was diagnosed with melanoma approximately Nov 1995.  Jeff set out to find everything he could about this dreadful disease.  What he discovered was that there was a great deal of information available on the internet, but it took him hours and hours to find it. He decided to put everything he could find on one "page" so that Lori Paterson's family could access the information more easily.  Unfortunately Cindy passed away  in August, 1998.    Jeff's efforts continued. What now is known as the MPIP - complete with a bulletin: board and chat room - is the result of Jeff literally spending : thousands of hours writing computer programs and researching melanoma.   His labor, which has been helping tens of thousands of patients, caregivers and their friends worldwide, outgrew the ability of one person to support it properly and the MRF agreed to continue and enhance this fabulous site to assist patients on a personal level.

Jeff Patterson's MEMORIAL SHOULD NOT BE PUSHED ASIDE AND MADE TO APPEAR AS A TRIBUTE TO AN Astronaut's WIFE.   
     Jeff allowed others involved in the struggle against melanoma to use his site and continued the site at his own expense and time for many years to be a chat room and social room and information site for melanoma individuals.

Last year the MPIP history information was included in the MRF write up.  This was appreciated.  Now it has again been removed!  

                                                                                                         WHY?

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OpalSay's picture
Replies 4
Last reply 10/31/2014 - 4:29pm

I was just recently diagnosied with Desmoplastic Melanoma. Don't really know to much about it, or any specifics. All I know that its very rare and usually happens in elderly males. I am a 28 year old female. I am going in for surgery Sept. 13 2013 for removal and to biopsy my lymph nodes. Other than that, I really have no idea what is going on or what to expect from that. I found one other person who has been through this, but it wasn't as big or had to go through the lymph node biopsy. They told me the staging will come after the lymph node biopsy as well. 

 

If any of you have any more information on what to expect, I would greatly appreciate it. 

Also, they say melanoma isn't painful but mine hurts so bad, and makes my whole arm hurt. It also turns bright red and a large area around the lesion gets fire hot to the touch. It also feels like someone is burning my arm with a cigarette. I have been keeping track of the lesion for about two years now, but not sure how long it has actually been there. I started to keep track once I noticed it wasn't getting smaller, but was getting bigger and bigger. 

 

Thanks

Opal 

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JustOnceCubbies's picture
Replies 8
Last reply 9/9/2013 - 1:42pm
Replies by: JustOnceCubbies, Anonymous

Hello everyone.   I was diagnosed 5 years ago with melanoma, and stayed at Stage 1 for 4 years, with treatment of Intron A just after my initial surgery.     Four years later I jumped to Stage III after a reoccurance in a lymph node.    Another round of surgeries and this time treatment with Sylatron.   I'm 19 months into weekly injections with Sylatron, and fighting the good fight.   My question is this.......does anyone know where I can find the statistical benefits of Sylatron during the maintenance period?    I know when we looked at the Interferon, something along the lines of 75% of the benefit was realized during that first month or two of HEAVY dosage.   So stopping after 8 months because of the side effects was something we could live with, because the statistical analysis pointed towards that.   Does anyone know where I can find a numbers breakdown on Sylatron like that?

 

Thanks in advance for any suggestions or help!

Mike

Frisco, TX

thepeters4.blogspot.com

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Maureen038's picture
Replies 28
Last reply 9/12/2013 - 3:35am

I love the new web site! Excellent job Tim and to all the other people involved in the changes.

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