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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Anonymous's picture
Replies 1
Last reply 3/18/2011 - 10:15pm
Replies by: LynnLuc

Anyone else concerned that insurance companies might balk at approving the cost of ipi/Yervoy treatments (off trial)  if/when FDA moves forward for approval of it? 

Has anyone had experience continuing with a drug going from trial to mainstream and dealing with insurance approvals, etc? 

Just curious..

Luke 1:37

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adgesoph's picture
Replies 5
Last reply 4/13/2011 - 6:27pm

 

My dad finally got into the GSK-braf inhibitor brain met trial at Vanderbilt!  He starts the medicine today and will return in a month for scans.  His doctor (Dr. Sosman) said this was his best option (over gamma knife).  He has two small brain mets as well as 2 lung mets, one in his pelvis and a couple in the neck area.  We just really need him to be a responder so he can hopefully take ipi in the coming months if this drug starts to fail.  Thanks for all your help and I'll let you know how it goes.

 

Adrienne

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Simmy from Oz -Melbourne's picture
Replies 6
Last reply 3/17/2011 - 11:20pm

Hi my fellow MPIPers!

I have been on PLX4032 (BRAF) for 7 weeks, and so far fabulous news!!  Im rapt and couldnt have asked for better results :-)  My brain tumour has disappeared... YAY!  And all of my tumours (liver, lungs, skin, everywhere basically) have all shrunk by an average of 70 - 80%  Although I am feeling great emotionally and mentally, I am suffering from the side effects pretty badly.   My entire body has been covered in this rash since week 2, but it is especially bad now on my face.  It looks terrible and the itchiness is unbearable!  Does anybody have any advice? or has anyone experienced this?  I also have aches and pains in all my joints, and terrible pains in my calfs and feet (my feet are blistered and painful to even walk on?)  Im not sure what to do, should I be resting to get better, and keeping my feet up,etc, so that I dont push it all too quickly and end up worse?  Or should I be attempting to do some little exercises and perhaps rehab stuff at the swimming pool? 

Also, Ive just spent the past week in hospital for a bit of a 'spruce up'!  I had a blood transfusion, which my doc sent me in for, by while in there they did a  blood test and discovered that

1. my calcium was too high (only by a little bit).  they gave me something thru IV, then lots of water thru there.  What does all this mean? Someone told me that CAlcium % CAncer go together.. Can someone please explain.... 

2. my potassium was low, so they gave me some of that thru IV too.  Anything I should know here?

ALSO...... PLEASE I hope somebody can help me with this BIG BIG problem of mine....... I CANT STOP WETTING MYSELF WHEN IM SLEEPING.  I WEAR 3 NAPPIES TO BED, HAVE SPECIAL WATERPROOF THINGS DOWN ON THE BED, BUT EVERY MORNING I END UP SATURATED AND HAVE TO CHANGE EVERYTHING......This problem is driving me mental.  My partner sleeps separately now, and nothing helps it, like not drinking at night, etc.  Im on methodone and gabapentin, I think these tabs just 'knock' me out so much, that when Im sleeping, Im just too relaxed to wake up?? But the doctors dont think this could be the reason.  Ive been tested and nothing is seriously wrong??? so im just lost and goin mental!!!  PLEASE CAN ANYONE HELP ME ON THIS ONE???    

God bless you all and hope that many of you have also been experiencinng good news and results, with all these new drugs emerging. 

love always, u are all always in my thoughts,

Simmy from Melbourne, Australia. 

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Rocco's picture
Replies 10
Last reply 3/19/2011 - 9:22pm

Just got home from a triple header of appointments today:  Dermatologist, Ophthalmologist and Oncologist.  I had experienced a lot of scanxiety in the days prior.  But all of that was quickly forgotten as I received a clean bill of health from all three!  CT and MRI were 'as clean as a whistle' according to my Onc.  Ophthalmologist has been keeping track of me since I experienced eye related issues after being on ipi.  He reviewed the recent MRI and was surprised to see that the muscles of my eyes appeared 'normal' again!   Derm said no issues noted, see you again in 6 months.  

Scans again in 3 months (June) and possibly after that I'll move to a 6 month cycle!

Life is VERY good right now! 

-Rocco, Stage IV, Ipi responder!!

Luke 1:37

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Janner's picture
Replies 26
Last reply 3/25/2011 - 1:25pm

This is a bit complicated and long.  Father, age 86, had a stage IIA (2.22mm) melanoma removed 5 years ago.  He refused the SNB and didn't want to consider treatment.  The SNB would have been under his right arm and I knew he wouldn't have dealt with any complications well with his dominant arm.  He was still swimming and playing tennis and both would have been compromised with any complications -  so he just did the WLE. 

In the meantime, he has been diagnosed with stage IV prostate cancer and stage IB lung cancer.  He had radiation for the lung cancer which appears curative, to date (2+ years out).  The prostate cancer is in some bones, but is not of major concern at this moment.

He is a vet and is treated at the VA.  Last week, he was at a regular derm appointment to remove some AKs and SCC.  The derm told him he had cancer all throughout his body and it was very serious.  Family confab today.  He had a PET/CT last December but we never got the results.  Turns out, he had two biopsies before Christmas and never told his kids.  I went up to the VA and pulled all his medical records today.  Did some quick reading and it turns out he now has thyroid cancer (been there a long time and slow growing - not a major concern) and a lymph node in his axilla positive for melanoma.  The PET/CT shows no other hot spots so it is possible that the melanoma is still confined to that lymph node and/or basin.

We see the onc in 2 weeks.  But I'm just thinking things through and trying to come up with ideas I think would work for my Dad.   

Do we do nothing?  What happens as the node continues to grow? 

Do we cherry pick the enlarged node and minimize damage in the basin?  Remove obvious melanoma and "watch and wait"?

Do we push for the LND?  I know that wouldn't be the first choice for my Dad.  He really isn't excited for more surgery.  I can see the onc recommending this.

Do we consider radiation to the basin?  Might that slow down growth and give him more time?

I don't see chemo, interferon or any harsh treatment as a valid option.  My Dad is still mentally all there.  It is very possible that melanoma won't be what kills him.  He has plenty of issues.  It's taken 5 years for melanoma to show any visible signs in this lymph node.  So far, not lightning fast spread.

Have I forgotten anything?  Any ideas on what you might do/suggest in this situation?  Not looking for a cure here, just looking at extending life and comfort a bit.  Just want to make sure I haven't forgotten something obvious.

Thanks,

Janner

http://www.MelanomaResources.info

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steelergirl's picture
Replies 3
Last reply 3/16/2011 - 10:39pm

I had a PET/Ct scan on Monday, March 7.  Nodules in my left lung popped up on the PET scan.  I have to have lymph nodes removed from under my left arm.  A biopsy will be done.  I will know more after i see the surgeon on the 25th of this month.  I will see my oncologist again after the biopsy.

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LynnLuc's picture
Replies 7
Last reply 3/16/2011 - 10:35pm

March 15...I had my first appointment at 7 AM and the last one at 6:45 PM and left Moffitt at 730 PM...arrived back home at 10 PM...it was a very long day of fast food, apheresis, scans and such!

I didn’t get to see my doc today but I am sure he will contact me with the scan results in the next day or two...he is awesome like that! I usually always get the scan results on the same day...but considering how late everything ran I couldn’t expect it yesterday.

March 16...dragging my butt to work...I still don’t have the energy or concentration I used to have so it is difficult to get myself back in gear.

 I am anxiously waiting on my scan results...really wished I could have seen the doc yesterday...but oh well...It was my choice to have all the appointments on one day so I wouldn’t miss so much work. And Dr Weber doesn’t do clinic on Tuesdays…

 Yes!! Got an e-mail from my favorite oncologist….

 "Mrs. L; MRI negative, the CTs were stable and show no obvious evidence of disease. Congrats! See you in 12 weeks. Jeff W. "

Speechless!..What can I say?? March 26 will be one year NED.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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jrami3's picture
Replies 7
Last reply 3/17/2011 - 7:37pm
Replies by: Janner, jrami3, MichaelFL, Rydell, Anonymous

I am so new to this. I was diagnosed 2 weeks ago with Malignant Melanoma In Situ.. The Surgeon went in and did another excision to get clear tissue. The original tumor size was 6mm x 8mm.  He told me no further treatment would be done.. Everything I have read so far is that is a big size that most In Situ are less than 1 mm... I have searched every site high and low... Does anyone have any insight? I lost my cousin a few years ago to Melanoma at age 32, this has me scared =(  Thank you!!

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I am so new to this. I was diagnosed 2 weeks ago with Malignant Melanoma In Situ.. The Surgeon went in and did another excision to get clear tissue. The original tumor size was 6mm x 8mm.  He told me no further treatment would be done.. Everything I have read so far is that is a big size that most In Situ are less than 1 mm... I have searched every site high and low... Does anyone have any insight? I lost my cousin a few years ago to Melanoma at age 32, this has me scared =(  Thank you!!

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mom3girlsFL's picture
Replies 6
Last reply 3/22/2011 - 11:10am

First let me say thanks for the congrats on my NED!  I am thrilled and will certainly be planning a summer trip with my family.

Second, hmm...how do I go about saying this?  Shame on you for your blog about your insurance company finding a more cost effective route for your radiation treatments by sending you to the crew in Japan!!!  Now, having said that, thanks for making me snort coffee out my nose and all over my keyboard when I laughed out loud at the comment!  Shame on us both!

Now, about the music.  I feel honored, never had a song written in my honor before!  I don't know if you are up to challenge though.  Let me explain...I have learned,  while reading your blog and your musical choices,  that we are either separated by a "few" years or have, clearly, different opinions on music.  Don't get me wrong (don't want to blow my chances of getting a song!) - I can certainly appreciate your talent but would love to see what you can do with the "Bee Gees", "Maroon 5", "Journey" - oh screw it, I don't know...just do your thing, I'm sure I'll love it!

Seriously though, keep on blogging - you got me through a very anxious week!

Laurie 

Do not fear tomorrow, God is already there.

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Replies by: Rydell

This is a good article on Ipi

http://www.internalmedicinenews.com/news/oncology-hematology/single-arti...

An excerpt from the article:

 

When chemotherapy works in advanced melanoma, it works quickly: A scan obtained after 6-8 weeks of therapy will show stability or shrinkage. That sort of response can also be seen with ipilimumab – but in addition, two novel patterns of response have been observed. One involves an initial increase in total tumor volume at the beginning of therapy, followed by delayed onset of stabilization or shrinkage.

Even more strikingly, some patients develop entirely new sites of metastatic disease when ipilimumab is started, with stabilization or shrinkage of both the new lesions and the baseline lesions coming several months later, according to Dr. Carvajal.

Our experience with melanoma: http://emandmichael.wordpress.com/

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Melanoma Mom's picture
Replies 12
Last reply 3/17/2011 - 4:12pm

"Unremarkable PET CT examination from vertex to the skull through the lower extremities. No malignancy detected."

Oh yeah, we're doin' the cancer-free happy dance! The PET scan for our son was clear and while we are still waiting for the CT results, I am going with the assumption that it will be more great news.  Bloodwork is also perfect and hardly shows any effects from the continued Interferon therapy. Next up: routine check-up at Dana-Farber in April, as we haven't been there since December.

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himynameiskevin's picture
Replies 13
Last reply 3/17/2011 - 10:34am

Well' I'm here again for my monthly scans. Flew in last night. I've got about an hour before my brain MRI and CTscan, so thought I'd come up to the library and say hello. Not much new to update on. Still just working a bit, staying busy and enjoying the free time. Still optimistic... but a little anxious about these results, we'll see what they reveal. I talk to the doctors tomorrow and hopefully fly home soon after that. If I get some good news, I'll let you all know soon as I can. I hope everyone is doing ok. I'll talk to you soon.

(fingers crossed)
-Kevin

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Well' I'm here again for my monthly scans. Flew in last night. I've got about an hour before my brain MRI and CTscan, so thought I'd come up to the library and say hello. Not much new to update on. Still just working a bit, staying busy and enjoying the free time. Still optimistic... but a little anxious about these results, we'll see what they reveal. I talk to the doctors tomorrow and hopefully fly home soon after that. If I get some good news, I'll let you all know soon as I can. I hope everyone is doing ok. I'll talk to you soon.

(fingers crossed)
-Kevin

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Ali's picture
Replies 2
Last reply 3/17/2011 - 6:17am
Replies by: FormerCaregiver, KatyWI

I was stage IIIb 4 years ago.  Did 9 months of interferon.  I had one in transit met removed from my leg and they found another in my thigh during a PET scan.  Biopsy confirmed melanoma.  ILI and ILP have been ruled out as possibilites because the tumor is too high up in the thigh.  I have seen many Dr.s, and the surgeons here are recommending the OncoVex trial.  I am a little worried about getting the GM-CSF arm.  Any thoughts on that?  It seems like from what I read some people have the tumor taken out and then get the GM-CSF injections, but is it normal too to take them with a tumor that has not been excised? 

I am 32 with three kids, my treatment goal is a cure. I would do whatever it takes.

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