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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Kathy520's picture
Replies 9
Last reply 9/15/2013 - 8:27pm
Replies by: Janner, Kathy520, Anonymous

I have a question about melanoma, I just had a melanoma removed from my left upper abdominal area in situ stage 2 ,I also have a family history of melanoma . Should I be asking for testing or any other treatment?

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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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SteveDB's picture
Replies 6
Last reply 9/14/2013 - 7:13pm

Hi all.

It's been a year or so since I was last here. I typically come in once a year or so to say-- Hi! I'm still alive, blah, blah, blah (whatever updates may pertain).

 

I have 7 more months, and I will reach the 10 year mark from my last of 6 surgeries, from 1997-2004.

I've found myself feeling it, deeper than I had before, and realized-- I need to learn how to live again.

Cancer doctors teach and prepare us to die, but they really have no idea-- at least a few years ago-- as to how to show us how to live again, or how to live beyond cancer.

So, for whatever reason, this evening, I googled-- living beyond cancer. It appears that much forward motion has taken place in this avenue. Which is a good thing.

 

So, Hi all! I'm still alive. I don't really know what that means, but I do it one heartbeat, one breath, one minute, one hour, one day, one week, one month, one year...... at a time. I pray each day, read my bible a little bit each day, and God shows up.... sometimes profoundly, sometimes very gently, and simply, so much so that at times, I miss it.

 

Ever watched the movie-- It's a Wonderful Life?

Remember the scene where Bailey made it back to the bridge, after his journey through Pottersville? Remember his prayer?

 

God, I want to live again. Please, let me live again.

Work through it. Come back to life.

One heartbeat at a time.

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nancyg's picture
Replies 16
Last reply 9/14/2013 - 5:03pm

I am new to this board, my husband was diagnosed
With Melanoma in Dec 2011 15.5mm/ ulcerated mole on his shoulder..
He had
Surgery to remove mole and margins- the cancer spread
To four sentinel nodes and one non sentinel node.. He had another
Surgery to remove the rest of the nodes under
The right arm- there was a tumor in one of the nodes.
Had three more surgeries ton remove other moles that looked
Suspicious -- all were Melanoma. No treatment was given... Interferon
was discussed but with the risk only being reduced by 1%, he did
Not do it. Jan of 2013 clear CT.... July 2013 pain on right
Side-- CT showed mass on lung and inflamed lymph nodes-biopsy confirmed
Metastatic Melanoma--- the only treatment he just finished
16 doses HD IL-2--goes for a Follow up CT Next week. When
I read this board I see that most people has lots of various treatments...
Is IL -2 enough??!
Sorry so long.
Thanks
nancy

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Junk1962's picture
Replies 9
Last reply 9/14/2013 - 4:41pm
Replies by: TSchulz, HopefulOne, katie1, karebear1905, Junk1962, Anonymous

My husband decided on this clinical trial at DFCI. After reading so many posts I can't believe no one else is in this trial?? Am I just "searching"
The wrong way? I've put in many ways to search for other participants-no luck! He is starting the trial on Tuesday and got the 10mg ipi arm. Since he is currently NED and we have only had one large (15mm) tumor in his leg removed in June-we would love to hear from other stage III -stage IV patients who went right to ipi after initial diagnosis (and resection) before any other signs of spreading. So many posts here show great success with ipi shrinking tumors! But, thoughts on ipi when no tumors or mets are present? Need a crystal ball!

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arthur's picture
Replies 13
Last reply 9/14/2013 - 4:32pm

On July 11th I found out I had melanoma, the tumor was 6.5 mm thick and ulcerated. My oncologist ordered a CT/PET scan, MRI and a chest x-ray (the melanoma was on my right shoulder) all of which came back with no sign of metastatic disease. On August 6th I had my sentinel lymph node biopsy and excision of the local area, the surgeon got clear margins but one of the three lymph nodes removed had micrometastases. My surgery to remove more lymph nodes is tomorrow at the time of me writing this. Last week when I met with my oncologist he staged me at 3B given this information. We talked about treatment options since due to the thickness of the primary melanoma I'm at a high risk of recurrence.

I'm eligible to enter a clinical trial for ipilimumab, but I feel like Interferon would be the better choice for me. I'm 22 years old and in good shape and my oncologist feels I could handle the interferon much better which would allow me to "live" instead of spending the next year turtling up at my parent's house because of the ipilimumab since according to my oncologist it would "be rough". I'm pissed off this happened to me more than anything, I had to drop all my classes this semester and take medical leave from work(due to the surgery literally obliterating my shoulder lol), as I mentioned I'm only 22 and I've never once tanned in my life, just had some sun burn's from when I was younger but don't remember them ever being that bad. I'm looking for feedback from people who have taken either interferon or ipilimumab, anything you have to share would be greatly appreciated. Thanks for reading and feel free to ask my anything.

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blden2186's picture
Replies 4
Last reply 9/14/2013 - 4:06pm
Replies by: blden2186, ecc26, maryb-z

Just took my 1st dose of the 11th months maintenance of Intron A. Does anyone know if it helps to ice the injection site before you give yourself the shot?

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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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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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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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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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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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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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Junk1962's picture
Replies 8
Last reply 9/12/2013 - 4:32pm
Replies by: Benpotts, JerryfromFauq, Junk1962, Gene_S, Anonymous

My husband had what doctors thought was a cyst removed on his leg in late may. Two weeks later he was told it may be melanoma!
We were referred to a surgical oncologist at MGH who removed the tumor and was confident the margins were clear ( he did no
Lymph node testing). The tumor was large and thick and after meeting with a melanoma specialist it was determined to be a melanoma
With an unknown primary. He had PET and CT scans all were clear.. he tested BRaf negative. They recommended either interferon or a clinical
Trial currently going on for high dose yervoy (10 mg?) We got a second opinion at Dana farber and they feel the same. Dana just repeated all scans
And a brain MRI -NED. The high dose Yervoy trial has been having a few incidence of bad side effects (colostomy-even 2 deaths!) we are starting to have our doubts about trial. We know melanoma is a terrible disease but none of these treatments seem to be a cure. Given no recurrence, or evidence of disease we are nervous about quality of life. We know interferon is no picnic but, we are scared of the high dose trial!! He is not eligible for the lower dose because he has no identifiable tumors or mets. Is anyone out there in the same predicament?? He has to start the trial on Tuesday so any info would be much appreciated!!!!

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