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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LesleyKS's picture
Replies 5
Last reply 7/9/2013 - 2:27pm
Replies by: LesleyKS, trippettl, Janner

Hello all.  I am a 34 year old female who has had, in less than year: Melanoma In Situ on left leg, pre-melanoma on back, several severe atypia and now a new one that I don't understand the pathology report for and would like anyone's help in understanding it.  My doctor wasn't really explaining it to me and I am wondering if that is because it is inconclusive?  This pathology is for the initial shave biopsy, I have already gone back and they did a punch biopsy on the site to remove more tissue.  I am still waiting for the pathology report for the second removal.  Here is the report:

"Submitted is a single cell slide of  shave biopsy material that shows a compound melanocytic proliferation composed of epithelioid cells within the epidermis primarily seen in confluent single cells along the lower epidermis and with rare cells in the spinous layer.  The dermal component consists of nested epithelioid cells as well.  The proliferation is transected at the base.

Diagnosis: Skin, right posterior neck, compound melanocytic proliferation with epithelioid cell features, extending to the tissue margins.

COMMENT: The differential diagnosis includes a compound nevus with spitzoid features versus an atypical spitzoid tumor.  The lateral and deep tissue margins are involved and therefore because circumscription is not seen, re-excision with appropriate margins to ensure complete removal is recommended"

I had never heard of Spitz or spitzoid before and my doctor didn't explain it to me.  Google search are unhelpful and at times frightening so I would greatly appreciate any explanation any of you can provide.  Also, does anyone recommend sending the slides to someone else to get a better, more clear, diagnosis?  Or should I wait for the second pathology report?

Thank you in advance for your support.

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Tim--MRF's picture
Replies 2
Last reply 7/9/2013 - 12:27pm
Replies by: Tim--MRF, POW

GSK just submitted an application to the FDA for their two new melanoma drugs to be used in combination.  This is a BRAF inhibitor, dabrafenib, and a MEK inhibitor, trametinib.  Studies have shown that these drugs work better in combination than either do alone.  I think most people expected they would be prescribed in combination, but getting this approval, if it is approved, will help smooth conversations about off-label usage and reimbursement.

http://www.gsk.com/media/press-releases/2013/GSK-announces-US-submission-for-dabrafenib-trametinib-combination-in-metastatic-melanoma.htmlTim--MRF

Tim--MRF

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Tina D's picture
Replies 17
Last reply 7/9/2013 - 9:45am

Sorry to be so long in posting. My mel specialist ( in St Louis) consulted with a surgeon who said that getting a biposy was not something he felt was feasable with my tumors being so deep, and my long surgical history. This was difficult news to recieve! But, thank you to a dear friend who was able to think quickly and clearly ( thank you, Amy!) I now have an appt in Nashville to discuss the Pd1 trial there. One thing that poses a possible denial is my prednisone dosage after the autoimmune response to ipi. I am still on 5 mg prednisone, and that is not a problem, but they have to decide if the dosages, and tapering, fit in with the strict trial guidelines. I have not been able to be on here much due to ongoing set-backs from my husband's back surgery, but will try to post after my visit to TN. Still feeling wonderful and am SO thankful to be here to celebrate our youngest child's 14th birthday today! She was 2 years old when I was first diagnosed with both breast cancer and melanoma within 6 weeks of each other. Yes...I am very blessed to still be here and be able to kiss her sweet cheek this morning and wish her a happy birthday :-)

Tina

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flvermonter's picture
Replies 2
Last reply 7/8/2013 - 10:58pm
Replies by: flvermonter, POW

Hello,

We met with a Medical Onc at Florida Cancer Specialists today.  He reviewed my husbands records and suggested he take taxol while getting his radiation.  The radiation is for the lung cancer and the melanoma.  He then said after the radiation is complete start on Yervoy.  That is unless the next petscan shows other spots.  In that case then would suggest he start on the yervoy instead.  His next PETscan is a week from Wednesday. 

Any thoughts or experience with receiving radiation and taking either taxol or yervoy?

Thanks, Mary

Hugs to all, patients and care givers.

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AllyNTAus's picture
Replies 9
Last reply 7/8/2013 - 10:52pm

So I went for my scans and reviews today at the end of cycle 4 on the Novartis BRAF/MEK inhibitor combination. I had a feeling that things might not be looking all that good because I just haven't been feeling 100% well for the last few weeks, nothing really solid I could define except for some very grumbly, gassy abdominal symptoms that have waxed and waned, so if anything I was thinking there might be something going on in my intestinal tract.

What I wasn't expecting was to be told that I have a fairly large cardiac met, 30mm diameter, 40mm high, in the right atrium. What surprised me even more was to see the report saying that this met was apparently "more subtle" and somewhat smaller on my previous 2 scans (May and April), but the reports on those two scans didn't mention it at all! I'm a bit bemused and peeved about that.

Various lymph nodes throughout my lower abdominal/pelvic region have grown too and there are some new nodules showing up, so it has really taken off.

So I am seeing a cardio thoracic surgeon on Wednesday to discuss the possibility of surgical removal. If this isn't possible then it will be radiotherapy. Clearly the cardiac met is serious stuff and needs some immediate aggressive treatment. After I am well enough the plan is to start on Ipi, which thankfully has just been put on our government subsidised medicines list. And my doctor tells me that if Ipi doesn't work then
Anti PD1 should still be an option, there are just not any trial seats for it (either alone or in combo with Ipi) just at the moment.

Aargh what a rollercoaster! Would be interested to hear from anyone else with experience of cardiac mets.
Ally

A bad day's fishing beats a good day's work everytime

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Moodypoodle's picture
Replies 4
Last reply 7/8/2013 - 8:46pm
Replies by: Charlie S, Janet Lee, Linny

Someone mentioned in a recent post about using Firefox instead of IE to post to this board.  Chrome works for me but it took ages to stumble on that fix. It occurs to me that others might be having issues too and could use this simple hint. 
 

Every Second Counts!

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worriedmom5254's picture
Replies 9
Last reply 7/8/2013 - 4:16pm
Replies by: Thandster, Anonymous, Janner, worriedmom5254

My son is 16 yrs. Old. After having a mole removed it was sent to a hospital for tests. That hospitals pathology report said superficial malignant melanoma. They then sent the biopsy to the university of Michigan pathology dept. U of M pathology report says severe atypia.my son is being sent to the UofM melanoma clinic to have more skin and tissue removed and to have every mole looked at. How can the pathology reports differ so greatly? Please dont tell me not to worry because of the odds of a child having melanoma are so small. My niece was 9 yrs old when diagnosed with ovarian cancer...i dont believe in odds!

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Replies by: Janner, Scott88
Hello all,
 
     I  am not formally diagnosed with melanoma yet. Have my first dermatologist appointment coming up on July 18. Put off some odd spots for several months in denial and ignorance. Now that I know better, many spots look dysplatic, many larger than the width of an eraser. Worst I feel a lump near my groin around where the lymph nodes should be.
 
I only technically have health insurance. A cheap kind which covers basically nothing beyond visits with a GP. 24, and living with mother and sister. Live in Massachusetts which has a public health program that gets a lot of praise, but from what I see is unavailable if you work and your employer offers insurance (which they're all required to now).
 
Extremely disoriented. What can/should I do at the moment?
 
My Head feels like it's in several places right now. Part's still adrift in disbelief. Another part's telling me I should rush to get some plans into place so at least some options are available.
 
Another is trying to rationalize feelings of guilt. I actually used tanning beds. Heard murmurs of the risks instead payed attention to people downplaying them. I ignored some signs for several months in denial and in doing so just incubated the problem. Feel if I suffer it's justifiable. But this is going to place a burden on my already vulnerable family they did nothing to deserve. Haven't told anyone anything yet.

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Anonymous's picture
Replies 8
Last reply 7/8/2013 - 3:16pm
Replies by: Anonymous, Janner

To make a long story short, I have a lesion on my ear....They did a biopsy, a full excision, and a wide excision, however margins were NOT clean, so I am due back at the end of the month for another excision.... (All these surgeries will have happened between April 1st and July 26th of this year, so about 4 months)

The lesion is a .8mm level II stage 1A, however they call it 'borderline' as severe atypia is the differential diagnosis.... So far I have been treated as if it were the latter of the 2, with everyone telling me surgery is the way to go, nothing else to worry about, treatment would be the same either way.....

I even went back to my primary doc, because I wanted to talk about my path eports and other symptoms I have been having (severe headaches every day, sometimes dizzy spells) and still, he assures me nothing is related to the melanoma where it was so thin and borderline, to go ahead and have the surgery and everything will be OK....He even offered to prescribe me some pills for anxiety, I must have came across as a loony..

That was last week...well, since that day, one of my lymph nodes on my neck have been getting slightly bigger each day.....I have read about the possibility of surgically induced spreading, (since the remaining cells have easier access to the blood stream and lymph system with all the bleeding, swelling, stitches, and so-on)

My questions are:

1) Has anyone else found that the possibility of spreading due to surgeries and unclear margins is probable?

2) How long should I wait for the node to go down before I get it checked out?

 

Out of all of this, I have not seen an oncologist, (no one deems it necessary) and I have not had any blood work, scans, or node biopsies (again, not necessary)

When should I start to ponder the idea of it NOT being all in my head, that this could be a realistic problem that no one wants to take care of????

 

help?!?!?

 

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blueeyes39's picture
Replies 8
Last reply 7/8/2013 - 1:51pm
Replies by: Anonymous, Linny, blueeyes39, kathycmc

I am a stage 3 and was in clinical trial....due to weight loss, unexplained hives and severe night sweats i have had to drop out of clinical trial. my couple questions are is interferon the only treatment for stage 3a? my new dr thinks thats what we should do and in the beginning of all this i thought it was to but after all ive learned about interferon im not sure it is. my dr thinks something is going on but they cant seem to find out where. he suggested another clinical trial, SLD, and interferon. i know its my choice but i know that interferons benefit are very few. if anyone has done this type of treatment or may have some other means please feel free to share cause i would like more choices. THANKS

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AndyT's picture
Replies 10
Last reply 7/8/2013 - 8:52am

Hi,

my wife is 36, first melanomsa mole in 2010, excision, sentinel node was positive. Went on interferon for 11 months. We had two wonderfuly years after that with reguar check-ups. Last eptember elevated markers show a grave picture - stage IV with one large lesion  and one smaller lesion in abdomen area, some minor lesions in the lungs. We joined a clinical trail with zelboraf, which worked well for 8 months - lung lesions remained the same, small abdomen lesion diappeared, the large one was a bit smaller. Just this week the latest CT results came in - the large lession is progressing and we had to quit Zelboraf.

Our doctor is now suggesting we try chemotherapy (dacarbazine). Reading a lot on melanoma we were hoping for ipilimumamb, but she said it only works with stage IV M1a or M1b patients, and not with M1c patients?! (M1c=Metastasis to other organs, OR distant spread to any site along with an elevated blood LDH level.)

I would be so greateful if anybody could please confirm or deny this? Also, would you have other suggestions - should we say not to dacarbazien, get a secod opinion (any suggestions for good written review of mediacal records by mail) or rather search for clinical trials?

There are these two we might be eligible:

1) A Randomized Open-Label Phase 3 Trial of BMS-936558 (Nivolumab) Versus Investigator's Choice in Advanced (Unresectable or Metastatic) Melanoma Patients Progressing Post Anti-CTLA-4 Therapy

http://clinicaltrials.gov/ct2/show/record/NCT01721746

2) A Phase 3, Randomized, Double-Blind Study of Nivolumab Monotherapy or Nivolumab Combined With Ipilimumab Versus Ipilimumab Monotherapy in Subjects With Previously Untreated Unresectable or Metastatic Melanoma

http://clinicaltrials.gov/ct2/show/NCT01844505?recr=Open&cond=%22Melanoma%22&cntry1=EU%3AIT&rank=10

Thank each and everyone for your replies, I wish all the best to you, stay positive!

Andy

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Anonymous's picture
Anonymous
Replies 12
Last reply 7/8/2013 - 3:53am

Hi all. First time poster here, although I've been following the forum occasionally for some time. Perhaps my question is a bit dumb but please bear with me and help me clear up some things. My 70 year old father is a stage IV melanoma victim, with mets in his lungs, liver and lymph nodes. He was first diagnosed in 2009 as stage III and had had subsequently removed his primary tumor and some lymph nodes in his neck.

He was now given a choice of treatment that would consist first of dacarbazine and then of ipilimumab (if necessary, I guess). The thing is, my father is extremely negative towards any chemotherapy and doesn't even want to hear about it. He insists he will beat the disease on his own terms. It's really his body, his illness and ultimately his decision, and I think it ought to be respected, but on the other hand I also try to explain to him that ipi really doesn't work like classical chemo, and that there are many people out there who benefited wonderfully from this drug. He might take my word for it when I present him with some success stories from this website. However, his doctor maintains that the only possible way of treatment is to administer dacarbazine first, and only later ipi.

Is this true? I've read on the Internet that this combination is a standard procedure "one-two" punch, but can't a patient demand to undertake ipi treatment alone if such his desire happens to be? I also find it a bit counterintuitive to administer a cytotoxic drug first, with all its detrimental effects on the immune system, and only afterwards apply ipilimumab, which is then supposed to work through this compromised immune response. Wouldn't a more logical sequence be ipi first, dacarbazine second?

Again, I apologize for my ignorance of the subject. Any clarifications will be greatly appreciated.

I also wish best of luck to all of you battling this disease. Stay strong! Whenever I read a success report, I want to just high-five that person. :)

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Tim--MRF's picture
Replies 9
Last reply 7/7/2013 - 7:08pm

I spoke with Janet a short while ago and she is having problems posting.  She has a question that needs some responses this weekend, so I offered to post on her behalf.  Please reply to this post and Janet will read online, though she may not be able to respond:

It’s been quite some time since I’ve posted here, as life with melanoma continues its roller-coaster ride with our lives. My husband was diagnosed with Stage IV Melanoma on January 17, 2013 with unknown primary – a sucker punch from out of nowhere.

Don had CyberKnife radiation to a single brain met in mid-February. We were fighting with BC/BS to cover Zelboraf, so he started on Ipi shortly after the cyberknife. Something went wrong, and the brain met was swelling and Don became paralyzed on one side. He had a craniotomy on March 5, and then spent 5 weeks in rehab. On March 15, he started Zelboraf and it was like a miracle. After rehab, we spent 5 weeks in Florida and had a wonderful respite.

However, after 2 months on Zelboraf, followup scans showed two tiny mets in the brain and “mixed response” to various other tumors in other locations. He was taken off the Z and began Ipi treatments on May 20. He had cyberknife for the two brain mets on May 30. He has now had 3 Ipi treatments, and the 4th is scheduled for July 17.

He has not felt well since the middle of May, lots of nausea and indigestion (stomach mets), lack of appetite, and general weakness. A brain MRI following up on the May 30 cyberknife shows several new brain lesions. It may be too early to tell if the two treated a month ago were taken care of, but there are certainly more. The doctors at Dana Farber are suggesting Whole Brain Radiation so that any other lesions will also be taken care of, and they feel this should be done as soon as possible.

My husband Don has a lot of disease, and we do not know if the Ipi is working for him. We plan to finish with the 4th treatment in a couple of weeks. Depending on whether or not the Ipi seems to be working, our next plan was to hopefully get him into a PD-1 trial, which as we all know will demand a “stable” brain.

I’ve seen posts from people on this forum who have SRS-type radiation treatments to many, many more brain mets than Don is showing now. When and why do melanoma patients with brain mets opt for the WBR? And how likely is it that WBR will work (we don’t seem to have had much luck with the SRS)?

We are looking to make a decision early next week, and, as always, your experiences and opinions will be most appreciated! Thank you all.

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DeniseK's picture
Replies 9
Last reply 7/7/2013 - 8:51am

Hello Everyone,

I had my first infusion of ipi yesterday on the 4th of July.  I'm thinking that's a sign.  Freedom from Melanoma!

So I have a few questions that if you could share your stories with me.

My main goal in taking ipi is to help me become stable for Anti PD 1 trial.  It didn't cross my mind that Ipi could work on me.  Now I might just be wishful thinking but I swear the sub q on my arm is smaller.  Since it's only been 1 day I"m wondering if anyone has ever seen immediate response?  

If I'm a responder, how long does it last?  If I'm reading things right it could be years.  Does it have a tendency to stop like Z?

Thanks for your help

Denise

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

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