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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AnnG's picture
Replies 11
Last reply 2/21/2014 - 9:49am
Replies by: ecc26, kylez, POW, AnnG, pd1gal, BrianP, Gene_S

In August I was diagnosed with an unknown primary with a metastatic site on the shoulder. Pet, MRI, ultrasound of eye, revealed no other measurable disease. The dye to identiy the sentinel node was not successful so the surgeon was not able to remove for further testing. The Mel on my shoulder was deep but all removed with clear margins. I lasted two weeks on full dosage on intravenous Interferon and then two weeks on 50%. Gave myself the shots for close to 2 months. A follow up Petscan last month revealed a spot under my arm. I am recovering from a Lymphadenectomy and the path report concluded one node Mel and the other thirteen clear and encapsulated.

My oncologist is recommending Leukine and ct scans every 3 months or just the ct scans. When we went for a second opinion after the initial diagnosis and surgery, a specialist at University of Pittsburgh told us that Leukine is not effective. 

Does anyone have experience with Leukine? 

Which Mel Center in the US sees the most patients? Though we live in upstate NY I will travel anywhere to see a top Mel Oncologist who is up on the newest treatments and screening techniques.

Thank you

Ann

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bkinman's picture
Replies 4
Last reply 2/21/2014 - 10:00pm
Replies by: BrianP, POW, bkinman

MD Anderson called today with an opeing in the 

Trial of ADI-PEG 20 Plus Cisplatin.  Anyone heard of it?  Any thoughts?

 

Beky

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arthurjedi007's picture
Replies 9
Last reply 2/19/2014 - 5:57pm

Thank you everyone for all the support and concern.

The surgery on my spine is not possible due to the blood vessel supplying the tumor also supplies my spinal cord. They say I'm a hairs breath away from being paralyzed from the T10 on down. The spinal cord is being compressed by that T10 where if it happened suddenly to someone they would be paralyzed but for me it has been slow so I can still walk.

However that is how it was last June when they did radiation.

Thus my delima. Since they did radiation to that tumor that means the genes have changed right? Thus these targeted gene methods of zelboraf, tafinlar, mekinist will probably not work. Right? I think I need an anitbody drug conjugate or something specifically for my radiated T10 and hope it works fast now that the radiation has worn off. Right?

I believe ipi was working slowly although my Dr said no but they gave me steroids in the hospital for inflamation so now the ipi is gone and I can feel the tumor pulsing like it did last June.

My Dr says take the tafinlar/mekinist but he says it will probably not work. Oh and keep taking the steroids because once you start you can't just stop them. So not much help from my Dr.

I'm very weak after being in that hospital. I'm trying to get strong again but they almost killed me there. I was going to get to Sarah Cannon in Nashville Thursday but I reschuled cause of the surgery which is not happening anymore so I dunno what I can do.

I still think the key is the radiation to the tumor changed the genes thus the generic meds will not work but I dunno.

 

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A lot of this article is pretty common knowledge by most on this forum but there were a couple interesting comments made.

http://www.washingtonpost.com/national/health-science/new-therapies-raise-hope-for-a-breakthrough-in-tackling-cancer/2014/02/14/b4f8e4fc-8dad-11e3-95dd-36ff657a4dae_story.html

 

 

 

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Of course pun is intended.  Really pretty neat stuff. 

http://news.yahoo.com/video/doctors-using-therapy-shock-away-063513629.html

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vicuk's picture
Replies 2
Last reply 2/19/2014 - 9:55pm
Replies by: jahendry12, geminilion

Not posted for a while so time for an update. We got results of latest scan yesterday. Lung tumours still immesurable and tumour in pelvis has completely disappeared. It's just a fatty deposit now. Still no side effects. So far ( 2 years in July) so good. Helen still working hard and she and her husband have just finished building a new house.

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POW's picture
Replies 7
Last reply 2/20/2014 - 8:31am
Replies by: G-Samsa, Brent Morris, POW, Mat, Anonymous

Catherine Poole of the Melanoma International Foundation just posted this message

"Ok, I think I have some more definitive news. Merck is FILING in June for PD1 approval with the FDA. How long that takes for approval is anyone's guess. Shouldn't be too long. There is no definitive date on EAP (expanded access) yet for this but hopefully soon. In the meantime their trials are closed.

BMS PD1 has a few openings scattered across the country. Moffitt has some openings in IPI refractory (didn't respond) and several other requirements. So stay tuned as we find out more.

PDL is just coming onto the trial frontier. Check clinicaltrials.gov for any updates"

Other posts in that tread talk more about a possible Expanded Access Program (EAP or "compassionate use") and whether or not one needs to try and fail ipi before getting the anti-PD1. You can read the whole thread here:

http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34823 

 

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Has anyone taken Yervoy and had unexplained fevers and chills that are intermittent?

My Mother has had reoccuring fevers, with only one blood test with a high white blood cell count. Blood tests are negative and CT scan doesn't show anything to go on.

Right now, it a bit of a mystery that has been going on for 3 weeks.

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/19/2014 - 1:04pm
Replies by: Michelem

Has anyone taken Yervoy and had unexplained fevers and chills that are intermittent?

My Mother has had reoccuring fevers, with only one blood test with a high white blood cell count. Blood tests are negative and CT scan doesn't show anything to go on.

Right now, it a bit of a mystery that has been going on for 3 weeks.

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Replies by: cpeters2498, POW

Had mole removed 2 years ago positive for Melanoma, had Melanoma surgury and lymph node biopsy with all clear.   Took a year of Peglated Interferson just in case, and all PET scans as late as late September came back clean.   Thought I would never have to deal with this again.

Had chest pains first week in January and CT scan showed Stage IV melanoma in both lungs and liver.

Wow one day you think you are cancer free and next day you find it has taken off.

Now working with Dr Linette at Siteman Cancer Center in St. Louis, I think he is one of the best anywhere.

I am part of a Phase 1 Clinical Trial which started Monday of this week, I think there are 12 in the US.  

Combination of Dabrafenib and Ipilimumab.

I can't believe it would make a difference this quickly but have not had the pains in my chest and upper stomach area I have been dealing with in the last 30 days.  It has only been 5 doses but I feel better than I have in a month.

I need this to work....I'm 53 and lots to do yet.

Charlie

 

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MattF's picture
Replies 5
Last reply 2/19/2014 - 10:18pm
Replies by: POW, BrianP, hbecker, SABKLYN, Mat

So scans in November 2013 showed

4 bone mets Femur, Ribcage, Humurus, Sacrum

2 sub q's that were poking out of neck

pituitary stalk metastisis

I got scans last week and resutls today only thing still showing although smaller are the Femur (L) and Left Ribcage everything else was undetectable/.

So Im happy with the meds and managing side effects somewhat ...with pain meds for general body and joint pain and some naseau meds etc. 

My only real nw thing is I do notice i have some acid reflux and or belching....im not thinking it is the meds.....but maybe diet? has anyone noticed anything on the combo regarding gas or acid reflux? (besides all the other stuff lol)

Matt

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geminilion's picture
Replies 9
Last reply 2/20/2014 - 9:15pm
Replies by: LuckyMan51, Bubbles, kylez, Anonymous, geminilion, POW, ecc26

It's been a bit since I've posted. Had biopsy and diagnosed with metatastic melanoma. I have 4 small brain tumors and multiple tumors in my right lung.

I am getting another brain MRI on Tuesday and MRI for spine. Doc said I would need full brain radiation and chemo. She is looking at my PATH reports to see if I am BRAF positive among other things.

I'm terrified but feel I have to put on a brave face for my family. I find myself comforting them and it makes me feel so badly though of course I understand.

Has anyone here done the radiation with chemo? 

 

 

 

 

 

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tickyloo's picture
Replies 29
Last reply 3/20/2014 - 8:52pm
Hello

I am hoping someone can help me. I was recently diagnosed with two malignant melamomas one on my neck .4mm and one on my toe .25mm.

After the biopsies it was a ok to tell my 6 & 8 yr old that Mummy fell ! and cut herself and that was ok but I am wondering if that will work with the WLE ?

I am having them two weeks apart with the neck this Friday. My scar is a little over 12mm in an oval shape and the dr explained the margins but not much else (other than it will take around 30 mins  ) Can I get away with this do you think ? Will a band aid cover it ?

I cant seem to find anything visual about WLEs ( other than REALLY scary stuff ) to guage it on ?

Its a school holiday on the day of the neck one so Im trying to figure out if my kids should wait with my husband and see me come out or I go by myself.

Input VERY much appreciated on this please

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/21/2014 - 6:09pm
Replies by: kylez, Shelby - MRF

Hi Shelby,

 

When will the VIDEO be available of the  symposiums that MRF conducted a few weeks ago in NY & San Francisco? Please give us link to video.

Also, I heard there is another symposium about ocular melanoma is schedule sometine in Los Angeles. Please give us details.

 

Thanks,

Marybeth

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