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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TSchulz's picture
Replies 3
Last reply 9/18/2013 - 4:51pm

Hello everyone, 

I have not been very active on this board the past several months and truly hope there is more positive than negative news flowing through the postings.  All the people who share here are heroes in my mind and helped me and my family through the darkest of times.  I'll be forever grateful.  

I wanted to share my most recent positive news - although a little old now.  My last trip to NIH in follow-up to my ACT/TIL treatment in May 2012 was the first week of August.  After the usual labs and scans the doctors, again, shared that my melanoma was not seen and I remain with no evidence of disease.  

Those words, have made life move forward again  for us - cautiously forward.  

All the very best to everyone out there dealing with this terrible disease and a special thank you to everyone who is enrolled in a clinical trial - it is because of us that there will, one day, be a solution to melanoma.  

Troy

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Momrn5's picture
Replies 15
Last reply 9/22/2013 - 10:52am

SLN Positive. Brings me to stage 3. I guess I am in a fight for my life after never being sick a day. I have been reading this site since my biopsy. Have learned a lot about melanoma from all of you but I don't want to be here. If you get my drift. Appt. next week with surgical onc. to discuss CLND. What is out there for stage 3? Is it ever curable? Or are we always just waiting? Still have to tell the kids. Don't know if I will be able to keep it together.

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MattF's picture
Replies 5
Last reply 9/21/2013 - 3:44pm
Replies by: Anonymous, washoegal, JerryfromFauq, jeffjohn78, JoshF

Someone please help me out...maybe I am spoiled. I was being seen at MD Anderson for the last year.

I moved from TX back to CA in July. I have been at UCLA for 6 weeks now and have accomplished

a FNA showing Metastatic Stage III Melanoma Reoccurance

a PET/CT showing two Mets all in the neck keeoing it regional and Stage IIIB

now they tell me today my Surgery for Parotectomy, and lymph node dissection is set for 

OCT 28th 2013?????

 

I am going to meet with City of Hope Chief of Head and Neck Surgical Oncology on Tues. Am I crazy but is 12 weeks at UCLA to get a biopsy, a scan and a surgery seem like alot to anyone else. They literally don't set up anything and have zero follow through.

I got these things done in a 14 day period at MD Anderson.

Then to really make me want to seek different care, UCLA tells me I will need my family doctor to sign a physical stating i am healthy enough for surgery 1 week prior to my scheduled surgery or UCLA will cancel my surgery.

I never had to worry about seeing anyone else at MD Anderson...it was complete and comprehensive care. I am honestly praying City of Hope is like that also.

Anyone have thoughts or better yet experience with City Of Hope?

Matt

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Anonymous's picture
Anonymous
Replies 0

Bristol-Myers Squibb Co. (BMY) on Thursday said its test to see if a skin-cancer drug can be used to treat prostate cancer didn't achieve its primary endpoint in a late-stage trial.

The pharmaceutical company was testing the efficacy of Yervoy after radiation in patients with advanced metastatic castration-resistant prostate cancer.

The company did observe some positive results across some efficacy endpoints, particularly in patients with a less-advanced form of the cancer.

"These results offer important insights for ongoing and future studies of Yervoy in prostate cancer, including a second large trial of Yervoy in patients with less-advanced disease," said W.R. Gerritsen, of Radboud University Nijmegen Medical Centre in the Netherlands.

Yervoy, currently approved in more than 40 countries to treat patients with melanoma, has been one of Bristol-Myers' successful newer drugs. However, revenue from the newer products hasn't helped the company stave off increased competition from generics. In July, the company reported a 17% drop in second-quarter profits.

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MattF's picture
Replies 6
Last reply 9/13/2013 - 12:37pm

Has anyone had this or heard about this?

There is a trial i can get in on for Yervoy at Stage III in hopes that it stops the cancers ability to spread.

Three arms 

a. Yervoy 3mg/kg 

b. Interferon High Dose

c. Yervoy 10mg/kg

Any one have any experience with Yervoy in Stage III or just genral words of wisdom. A week ago i was stage II and I hate to say it but have not learned enough about the treatments.

Matt

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MattF's picture
Replies 2
Last reply 9/14/2013 - 3:58pm
Replies by: blden2186, Anonymous

So just looking for opinions....docotr has at this point given me an option.

PET/CT is done and 2 METS to either Salivary Glands or Nodes in Neck...he feels comfortable staging at IIIB but knows with the surgery and full dissection it could go to IIIC

We talked about both Interferon courses at 30 to 60 days after surgery.

I'm really just looking for experiences and or opinions...effects? efficiancy? results? side effects etc?

He also discussed a trial which i will outline on a separate post.

Thanks

Matt

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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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