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 11
Last reply 7/16/2013 - 11:54am

Hello All, 

I wanted to share my latest good news from my follow-up visit to NIH last week.  340 days after they infused my 119 billion TIL cells back into my body -my doctors gave me the label of " Complete responder with no evidence of disease".  This is a label I hope to wear for a very long time. 

It has been a great year watching the tumors shrink away.  But even with each bit of good news comes the fear that it will, at some point, turn the other direction without warning.  Hearing the phrase above has allowed us to breath a little deeper and feel a little more confident that melanoma may remain behind us for a little while.  (How about gone but not forgotten?)

I don't post here all that often but when I have I have received so much support and inspiration.  I am constantly amazed and inspired by everyone who chooses to share their stories or their advice.  I  have never participated in a community like this before but have found so much peace in knowing that there are others who really know what this about - and they have my back.  Thanks for that.  

I hope everyone who reads this gets to hear the words of "no evidence of disease" and those words linger for year after year.  

All the best, 

Troy

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5374brian's picture
Replies 3
Last reply 7/15/2013 - 9:35pm
Replies by: 5374brian, POW, Owl

Keri made a strong recovery from her intussusception surgery 9 weeks ago. We were excited to be going into the BMS trial. Merck turned us down and BMS wanted 8 weeks from the surgery and WBR. The day to start the trail Keri had acute blocking in her left leg that landed us back in Moffit for surgery. We meet with several doctors and they were torn on weather to do anything or not due to breaking up clots can cause sever hemorrhage when you have cancer. Every doctor came in one by one and stated their thoughts. We told each that we are going to treat what we can today and win. No looking back. We have decided to not dangle carrots anymore. Once Keri recovers from her surgery she had Friday night we are going with a chemotherapy. Our oncologist said lets take it one day at a time. She knows us now to well and we all laughed when our response was we will be back soon for her first treatment. We feel that a treatment is better than no treatment at all. No more waiting we are going for the Hail Mary and are going to get the touchdown. This might not be for everyone but dont let the carrots blind you. Melanoma is no longer playing fair so we are going to start firing back daily with no waiting. Good luck to everyone and remember their are no wrong decisions when fighting melanoma. 

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DeniseK's picture
Replies 13
Last reply 7/15/2013 - 4:26am

Hey everyone,

GREAT news today at Gamma Knife Doc.  I had my first MRI  Wednesdayt since SRS completed on June 18th.  I only had SRS on 2 of the 7 brain mets I have.  Having 7 was a shock, I only thought I had 1 but high def MRI showed 7.  Anyway I had my first infusion of IPI on the 4th of July, it had only been in my system for 6 days.  I"m also taking 1/2 dose of Z.  So the GREAT news is that all 7 of my brain mets have shrunk approximately 50%!!  

I thought, "how could that be?" I only had SRS on the 2 that were 1cm or larger.  The doctor couldn't explain it either.  He said maybe from WBR which was completed in January 2013 and they all grew in that time, or the cross rays from SRS radiation which wouldn't explain all of them shrinking because of their location, or from Ipi??  Doctor didn't think Ipi would work in 6 days but what else could explain this remarkable news??  As of today I am 7 weeks stable.  I need 8 weeks for Anti PD 1 trial, but maybe I don't need trial??  Maybe Ipi is working for me??  I go in for next MRI the day of Gamma Knife which is July 25th.  As long as there's no growth and still shrinking I would be eligible.  2nd infusion of Ipi scheduled day after gamma knife or day of.  

What do you think?  I hope that whatever is working keeps working and I can become NED/Remission!!  

All my best to you all!!

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Tina D's picture
Replies 12
Last reply 7/14/2013 - 9:58pm

I went for my appt in Nashville and was super pleased with the Dr and staff there. As far as we can tell I will qualify for the Merck PD1 trial. Need to have brain MRI done first ( scheduled for the 17th) then the rest of the prescreening scans and labwork the following week if the brain MRI is negative. If all goes well, I will be entering the trial around the end of the month. Merck trial has 3 arms. One PD1 2mg, one PD1 10mg, one chemo ( investigators choice).  I will be randomized into one of the 3 arms. IF I were to be randomized into chemo arm, there is a crossover allowed after 12 weeks if mel progresses during that time. I am thankful for this option and anxious to get it started.

High point of my visit to Nashville was getting to meet fellow warrior, Amy, face to face!!  :D  

I will post as I go...

As always, trusting the Lord!

Tina

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Calynda's picture
Replies 3
Last reply 7/14/2013 - 2:40pm

I originally posted back in February... That post can be found here http://www.melanoma.org/community/mpip-melanoma-patients-information-pag...

The quick version of the first post was that I was pregnant and got a spot checked out (that had been changing for almost a year, but hadn't had it looked at because I got pregnant, then had a miscarriage and needed a D&C, then got pregnant again. By the time we verified that pregnancy was sticking around, I was a month from changing insurance...

So at the point of the last post, I had a shave biopsy done and it came back as a deep malignant melanoma. They had scheduled the WLE & SLNB...

I found that thread and posted an update thinking it would bump it to the top, but it didn't, so here's what I posted on that thread:

"Re: New Here ... Calynda - (7/13/2013 - 3:39am)
I thought I'd dig up my old thread to post an update. The WLE and SLNB were successful. The margins were clear and they pulled two lymph nodes during the surgery. One of the two tested positive... At that point, we couldn't do anything more before the baby got here.

I had my baby boy on May 15th. I was induced at 37 1/2 weeks due to blood pressure. He's pretty much perfect. I had my PET scan on June 7th. There were two spots that they wanted to look at more closely, but were things that they usually wouldn't look twice at. One spot was in my spine and that turned out to be nothing. The other spot is a 6mm mass on my deltoid tendon that they aren't sure what it is. They don't think it's the cancer, but they couldn't rule it out.

I had an axillary lymph node dissection on July 5th (and still have the JP drain hanging on me). They pulled an additional 12 lymph nodes and all 12 came back negative. Yay!

Next week my baby boy has his two month check up on Monday, I have my post op appointment and hopefully have the drain removed on Tuesday, I have an orthopedic consult for the spot in my arm on Wednesday and get to drive 1.5 hours for a consult at a melanoma center on Friday. It'll be a busy week, but hopefully by the end of it, we'll have a plan of attack.

I'm feeling good. The scariest part of all this (besides the waiting) was going for the PET scan because I knew that would give us the best indication of how bad the waiting might have been.

I don't know if we can post pictures here... If we can, I'll share my little boy, Elliott Cole."

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tasjacques's picture
Replies 6
Last reply 7/14/2013 - 9:24am
Replies by: awillett1991, Anonymous, tasjacques

Hi,
My husband is getting his third infusion MK3475, but blood test came back low albumin and hemoglobin. He had bilateral swelling of legs. Anyone with this symptoms? What you and Onco did? Any help, suggestion are welcome.
Elenise (Jacques wife)

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DeniseK's picture
Replies 11
Last reply 7/13/2013 - 11:07pm
Replies by: Jaryllane, Janet Lee, DeniseK, mbaelaporte, Amanda, Anonymous, POW

So hopefully I"ll be starting the trial within the next 6 weeks.  What are the side effects of this drug?

Does it cause photosensitivity?  Joint Pain?  Nausea?  etc......

Curious because I hate these side effects.  especially the photosensitivity, I'm cooking on the west coast!!

Thanks,

Denise

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Cindy VT's picture
Replies 2
Last reply 7/13/2013 - 11:00pm
Replies by: NYKaren, Fen

Had a nasty bought of pericarditis and  ended up in the hospital.  When I first got this chronic disease, my family did some research on the net and found that this is sort of a side effect of the melanoma disease. 

Its good to be home.  I hope all of you are doing well, and getting on with life.

 

Cindy VT

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I am continuing my battle with Kaiser to get approval for participation in the Genentech BRAF/MEK trial. I just found out some information that makes me feel a bit better about all of this.

I am a Kaiser member through a Medicare Advantage Plan. Medicare regulations states that when you participate in a trial at a Medicare approved facility, the facility bills Medicare directly. If it is an outpatient service, Medicare will pay 80% of the costs as long as the service is something Medicare would usually cover. The Medicare Advantage plan may chose to cover the other 20%, and you need to go through whatever their approval process is for going to an outside service.

For me, this is fantastic since I was looking at potentially paying out of pocket for the first two months of this trial for services not covered by the study. The items that weren't covered included a PET/CT scan, which is big $$$! Twenty percent of big $$$ sounds better than 100% of big $$$! My stress level around this approval just plummeted!!!!

I had an Alice in Wonderland type of day with pushing the approval process forward, I had a health plan representative tell me the health plan never pays for any expenses related to a trial, which is totally against California law! Then I had my doctor's nurse confirm that he is not going to advocate for me with the health plan approval process because he just doesn't support participation in Phase I clinical trials! So I am trying to get to speak to the physician who is reviewing the request for the health plan to make my case. All this is way more than anybody should have to do just to get approval for a covered service.

That's it for now. Take care everyone, and keep up the good fight!

Eileen L

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Calynda's picture
Replies 13
Last reply 7/13/2013 - 3:39am

I recently saw a dermatologist about a spot on my skin that I've had forever.  I had a previous doctor tell me that it wasn't anything to worry about unless it started changing.  Last year I stopped taking birth control and got pregnant fairly quickly.  Sometime in that time frame, the spot in question started to change.  It was going to be a priority, but then my baby stopped growing and I had to take care of the miscarriage since my body did not recognize a problem.  Shortly after that, I was pregnant again.  We found everything to be good with the baby at the end of November/beginning of December.  I was a month away from changing insurance, so I figured it would be easier to wait and see the new doctor than to try to find one under my previous insurance just to change anyway.

 

So basically the spot has been changing for a little less than a year at the time it was biopsied.  The determination was Melanoma.  I'm currently 25 weeks 3 days pregnant.  I was informed of the Melanoma a week ago.  Today, in addition to my 3 hour glucose tolerance test for the pregnancy, I had a consult with an oncologist as well as with the general surgery department.  I should be scheduled for a WLE and a SLNB (without the blue dye since I'm pregnant) within about 2 weeks.  Once that's done, we should know more about how bad, or not bad this is.

 

I'm terrified that it will be bad.  Right now it's classifed as stage IIc.  The oncologist has informed me that I will probably have 1 year of treatment after the baby is born.  The baby is currently due May 31st, but I have a consult with Perinatal on Wednesday.  I have had no complications with the pregnancy so far, but they want me to meet with Perinatal incase they have to have me deliver the baby early so that I can start treatment.  The oncologist is worried about post partum emotions mixed with the cancer treatment (I'm pretty sure it was interferon she had mentioned).  She's also mentioned that there is a clinical study she'd like to try to get me into.  She had mentioned this particular study was one that would add to the other treatment.

 

I'm working very hard to not let this adversly effect my day to day life.  Right now my husband and I don't know anything other than the spot was a thick melanoma.  I can't wait to get some more answers so we know how to plan for this.  My husband is really scared about the prospect of having to care for a newborn and a sick wife.  The waiting is just really hard.

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NEHT2868's picture
Replies 5
Last reply 7/13/2013 - 12:52am
Replies by: DeniseK, Tina D, POW, Brendan, NYKaren

I had my scheduled brain MRI at Dana Farber this morning and i received great news from the radiation oncologist.... In his words "Remarkable". All of my lesions and tumors shrunk or disappeared! The doctors are not sure if it is due to the WBR that was completed in March, the 4 infusions of IPI that was completed in June or the 3+ weeks of Zelboraf that I am on now. 

 

Bryan

 

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Research July 11, 2013

 

 

Imatinib for Melanomas Harboring Mutationally Activated or Amplified KIT Arising on Mucosal, Acral, and Chronically Sun-Damaged Skin

J. Clin. Oncol. 2013 Jun 17;[EPub Ahead of Print], FS Hodi, CL Corless, A Giobbie-Hurder, JA Fletcher, M Zhu, A Marino-Enriquez, P Friedlander, R Gonzalez, JS Weber, TF Gajewski, SJ O'Day, KB Kim, D Lawrence, KT Flaherty, JJ Luke, FA Collichio, MS Ernstoff, MC Heinrich, C Beadling, KA Zukotynski, JT Yap, AD Van den Abbeele, GD Demetri, DE Fisher

 

 

 
TAKE-HOME MESSAGE

Results of a multicenter phase II trial showed a 50% response rate to imatinib in patients with KIT mutations. Notably, for future biomarker studies, no responses were seen in patients with KIT amplifications but no mutations.

ABSTRACT

Purpose: Amplifications and mutations in the KIT proto-oncogene in subsets of melanomas provide therapeutic opportunities.

Patients and Methods: We conducted a multicenter phase II trial of imatinib in metastatic mucosal, acral, or chronically sun-damaged (CSD) melanoma with KIT amplifications and/or mutations. Patients received imatinib 400 mg once per day or 400 mg twice per day if there was no initial response. Dose reductions were permitted for treatment-related toxicities. Additional oncogene mutation screening was performed by mass spectroscopy.

Results: Twenty-five patients were enrolled (24 evaluable). Eight patients (33%) had tumors with KIT mutations, 11 (46%) with KIT amplifications, and five (21%) with both. Median follow-up was 10.6 months (range, 3.7 to 27.1 months). Best overall response rate (BORR) was 29% (21% excluding nonconfirmed responses) with a two-stage 95% CI of 13% to 51%. BORR was significantly greater than the hypothesized null of 5% and statistically significantly different by mutation status (7 of 13 or 54% KIT mutated v 0% KIT amplified only). There were no statistical differences in rates of progression or survival by mutation status or by melanoma site. The overall disease control rate was 50% but varied significantly by KIT mutation status (77% mutated v 18% amplified). Four patients harbored pretreatment NRAS mutations, and one patient acquired increased KIT amplification after treatment.

Conclusion: Melanomas that arise on mucosal, acral, or CSD skin should be assessed for KIT mutations. Imatinib can be effective when tumors harbor KIT mutations, but not if KIT is amplified only. NRAS mutations and KIT copy number gain may be mechanisms of therapeutic resistance to imatinib.

Journal of Clinical Oncology
Imatinib for Melanomas Harboring Mutationally Activated or Amplified KIT Arising on Mucosal, Acral, and Chronically Sun-Damaged Skin
J. Clin. Oncol. 2013 Jun 17;[EPub Ahead of Print], FS Hodi, CL Corless, A Giobbie-Hurder, JA Fletcher, M Zhu, A Marino-Enriquez, P Friedlander, R Gonzalez, JS Weber, TF Gajewski, SJ O'Day, KB Kim, D Lawrence, KT Flaherty, JJ Luke, FA Collichio, MS Ernstoff, MC Heinrich, C Beadling, KA Zukotynski, JT Yap, AD Van den Abbeele, GD Demetri, DE Fisher

This abstract is available on the publisher's site.

Access this abstract now

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mama1960's picture
Replies 2
Last reply 7/11/2013 - 12:58pm
Replies by: mama1960, POW

Doc just told me he would like to start me on this in the next couple of days. Having trouble finding info, any hints?

It is what it is.

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chalknpens's picture
Replies 2
Last reply 7/10/2013 - 10:55pm
Replies by: chalknpens, Anonymous

I am here to vent some frustration, self-doubt, and fear. I have so little to complain about in comparison to most here. I offer my apologies.

I've only been dealing with skin cancer for a little more than a year - treatments, that is. I've no doubt had it for years and years.
The cancer sitings have been now on my right shoulder (basal), left back(melanoma), left forearm(melanoma), right shin(basal), left calf (squamous)

It took 8 surgeries and about a hundred sutures to clear those away. I have what some of you may recall my naming "The Mark of Zorro" on my back ... seven inches long and three inches wide at the top and bottom. That's the largest of the set of five.

... I saw the dermatologist last week, had another biopsy, and he prescribed an expensive cream rather than more cryosurgery on my forehead (his suggestion.) The biopsy came back positive:  on the left side of my chin, another squamous.

If I have the first surgery on my face, I worry that I will face more to come in another three to six months. Will the next one be the spot on my nose, or among the brown 'liver spots' on my cheeks? Will I have this 'one only,' or perhaps 'just two,' and then, reasonably, 'one more?'

Or will I say, now, 'Enough?' Where do I draw the line  ... this is on top of Multiple Sclerosis ... the cognitive effects of which took me out of my career as a public school teacher. How much is too much?
 

I am not perfect, but I am enough.

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LMonty's picture
Replies 3
Last reply 7/10/2013 - 4:18pm
Replies by: LesleyKS, Lauren6, Janner

Hello,

 

I was hoping someone could help me figure out what my pathology report is saying about a mole I had biopsied. I actually have two pathology reports because it was sent for a second opinion. The mole is obviously atypical, but I'm not sure about what the rest is saying. To me, it sounds like the sample was too thin for them to be sure it isn't anything worse. The biopsy was a very thin shave. The mole is on my big toe next to my nail, so it is in a bit of a diffcult place.

I'm supposed to be having a Mohs surgery to get the rest of the mole. Does this sound like the right plan? I've read that Mohs is usually done for basal and squamous cells, and for an atypical mole I should be having an excision done, but I don't know if that will be possible because of where my mole is. My other option is to try to see a podiatrist surgeon, but I don't know if that would actually be a better option. I'm supposed to make an appointment soon, so I'd appreciate any help.

 

Pathology #1 says:

Atypical epidermal melanocytic hyperplasia - See Note

Note: Biopsy is very superficial and more severe process can not be excluded. Conservation re-excision with negative margin is recommended for the treatment and proper evaluation of the entire lesion.

Microscopic Description: Superficial biopsy of acral skin with increased number of atypical epidermal melanocytres with pagetoid spread.

 

Pathology #2 says:

Irritated lentignous melanocytic proliferation with modrate atypia, involving peripheral and deep histologic edges (see note)

Note: Complete removal is recommended for further evaluation and therapy. Multiple original and deeper step sections were examined.

 

Thanks again for any help anyone can give.

 

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