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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suzette12's picture
Replies 3
Last reply 2/21/2014 - 1:11pm

Hello,

My husband was diagnosed in November of having stage four Metastatic Melanoma. A very small spot found on his left lower lung and a lesion on his spine.  The spot on his lung was sent for a biopsy  but it was so small that they cannot determine if he carries a melanoma gene.   He is now on Yervoy treatment.  He has had two infusions and is having terrible side effects.  In fact, they had to cancel his third infusion this week because of his side effects (swelling in the ribs-supposedly caused by an increase in the growth of the lung tumor which is attaching to nerve endings), eye irritation and rash).  His pain is over the top.  No plan to remove the tumor, they simply put him on a steroid to decrease the swelling.  Can anyone relate with these side effects and are they normal?  We live in a small town with very little experience of this disease and Yervoy treatment.

Any advice would be a blessing.  I'm very scared for him (us).

Thanks.

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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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26.2vegan's picture
Replies 15
Last reply 2/21/2014 - 9:39am

Hi, my name is Allison, 37 years old, and I'm trying to find a new dermatologist - someone who is experienced and with expertise in melanoma detection through skin screenings. I'm looking for someone new because I don't feel confident that my current dermatologist is experienced or thorough enough. She just biopsied a mole that I was concerned about (because its appearance changed), but she did it reluctantly. And it revealed a malanocytic nevus with moderate cytologic atypia with very close margins. Not melanoma at this point thankfully, but still risky. I have several more moles that look just like the one that was removed. I have a strong family history of melanoma - my sister was diagnosed with melanoma recently, and my father died from it last year. So i want to find a doctor who has years of experience identifying suspect moles. I'd rather have any number of benign moles removed than to have one dangerous one overlooked.

I live in the Raleigh, NC area. Does anyone have any recommendations for anyone in the Triangle (Raleigh, Durham, Chapel Hill) or surrounding areas? Thanks so much for your time.

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/20/2014 - 9:28pm
Replies by: Anonymous, Brent Morris, POW

does anyone have experience with yervoy muscle weakness and fatigue? both hit my husband hard after the 3rd does and now after the 4th even more. His legs just give out on him. How long do these side effects last? I can't find info on this anywhere?

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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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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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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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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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lisa215's picture
Replies 9
Last reply 2/19/2014 - 7:54pm
Replies by: lisa215, Cfenton, Janner, Anonymous, paul Lyons

Hi, Dr miller at upenn reviewed my pathology report and his office called to schedule me for MOHs surgery. Anyone have experience with MOHs for melanoma stage zero?  I didn't realize it was an option for melankma. Are there advantages or drawbacks over excision? 

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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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yoopergirl's picture
Replies 8
Last reply 2/19/2014 - 5:19pm
Replies by: Anonymous, yoopergirl, lhaley, awillett1991, Zan

 the  left leg is buckling under me when I try to stand up now and I fell 4 times this weekend, need help using the bathroom now and showers are not even in the picture since I fell ccoming out last Friday. The chemo must be doing this, any one else?

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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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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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ClaudeM's picture
Replies 15
Last reply 2/19/2014 - 7:16am
Replies by: ClaudeM, Anonymous, Bubbles, Cooper, lanasri, POW

Diagnosis: Nodular Melanoma, Breslow 5mm, Clark IV, no ulceration, no periphereal lymphoadenopathy. T4NoMo.

I was on Biological therapy with interferon alpha 2b. I went through the induction phase. 5 days a week 30 MIU  INTRON A intravenous.

Wow was that a living hell or what? My liver was so damaged by the end of the month that my doctor thought i had Hepatitis. My ast/alt were like 450, and 420.

The second phase was better, but still pretty damn bad. 18 MIU INTRON A 3 days a week for eleven months, subcutanously with Multi Dose Pen.

I remember I thought that eventually it will get better , headache, nausea, fever, leg pain but it's didn't. I mean, the fever was not so severe as it was in the begining but everything else just stayed the same.

Now i am doing a research of real life stories of how everyone handled their dose of "liquid hell".

Please, if you went through a therapy with Interferon, Roferon, Peginterferon, tell me how you dealt with it. What were the side effects? Did anyone found a way to deal with some of them?

Also, if you are about to start this treatment , please contact me and i will help you with all i know about it.

It's good to be here on this site, i don't know why i haven't found it sooner.

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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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