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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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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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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mclaus23's picture
Replies 4
Last reply 7/6/2013 - 10:49pm
Replies by: awillett1991, mclaus23, Anonymous

Hello :)
My father has been battling stage IV melanoma for several years.
He was treated with Ipi and most recently the clinical trial drug PD-1.
He had a very rare side effect on the PD-1 and can no longer take it.
He has 2 masses on his adrenal glands which grew 1/2 inch since he stopped pd-1 which was about 4 weeks ago.
He had a total of 5 infusions.
The adrenal tumors were there with Ipi so he's pretty stable at this time.
I hope the Zelboraf will work for my father.
I would love to hear any feedback from anyone on this drug, side effects, current prognosis!!

Thanks so much in advance!!!!

Margaret

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kellygrl's picture
Replies 17
Last reply 7/6/2013 - 9:32pm

My husband had MRI & CT scan this week, 8 mos on Zelboraf and brain tumors are still shrinking and CT remains clean! :) POSITIVE MIND ATTITUDE & PRAYERS

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Jessmoon's picture
Replies 8
Last reply 7/5/2013 - 3:10pm

My husband and I just got back from visiting Mayo Clinic for a second opinion regarding his stage IV melanoma that was diagnosed last month.  Our oncologist in Des Moines (along with a melanoma specialist at the University of Iowa), has recommended, he enroll in the ECOG study where he would either receive Interferon or Yervoy. 

Today, Dr. Markovic at Mayo Clinic, has recommended a different treatment, Leukin.  He would inject this daily for 14 days and then be off the medication for 14 days.  This would continue for 3 years.  He does not prescribe Interferon because it does not increase survival time and has many side effects. He is also concerned about Yervoy, because studies have shown that 5% of patients died during the research studies while taking the medication.  He has been using Leukin for over 10 years and has seen good results, plus he reports minimal side effects. 

Has anyone been on this medication? Any suggestions?

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Richard_K's picture
Replies 4
Last reply 7/5/2013 - 12:33pm

Yesterday started out good and then just continued to get better from there.  First, in terms of traffic, the drive into New York City was the best I can ever remember.  Traffic was very light with no holdups anywhere even though I forgot to bring our EZ-Pass.  Second, my derm evaluation started early and went fine with no issues.  Next, I had my blood drawn at NYU and went on to see Dr. Pavlick.  No problems with my exam AND BOTH my creatinine and bilirubin were back to normal.  I was given another six week supply of pills and officially start my 41st month on Zelboraf.

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