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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Sherron's picture
Replies 2
Last reply 12/17/2010 - 12:13am
Replies by: JenC

How are you and your husband doing.  I have not seen a post from you recently...Just thinking about you both.

Take Care,

Sherron,wife to Jim FOREVER

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Linda J's picture
Replies 3
Last reply 12/16/2010 - 8:50pm
Replies by: nicoli, Carmon in NM, jag

I'm just wondering if people here have done any natural or homeopathic treatments along with, or instead of conventional therapies.
I'm trying to decide if I should do any vit C infusions. I think I might also get a juicer and try any alkaline diet...any thoughts?
Does anyone have success stories connected to natural or homeopathic treatments?
Thanks

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Sherron's picture
Replies 0

How are you and your husband doing?  I have not seen you post recently.  I am thinking about you!

Take Care,

Sherron, wife to Jim FOREVER

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LynnLuc's picture
Replies 7
Last reply 12/16/2010 - 10:26am

my scans are clear and I am still NED...my thyroid is still reacting and now it is no longer “not functioning” but has bounced up to the high side LOL...also seen as good! They took pics of my thighs today and Doc laughed and said I would be famous lol...I said I am blessed...I begin the 2nd Twelve week cycle on Dec 22.

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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davekarrie's picture
Replies 9
Last reply 12/15/2010 - 10:12pm

Good morning all,

Just a quick update on myself.  Initial tumor 1.5mm, mitotic rate 4, non brisk TIL on center of sternum/chest.  Had the WLE, about a 7 inch scar, and SLNB under both armpits.  1 was positive under left arm, then complete Lymph node disection of 41 nodes.  The drain comes out tomorrow and had stitches out of WLE 2 days ago and healing very well.  PET scans negative so for now NED. Met with oncologist at Mayo clinic and she said there is really no approved treatments for IIIa, but she did recomend Leukine if my insurance would cover it.  I have blue cross/shield.  I will be calling them today, but my question is for all out there who have tried Leukine.  What are side effects, how long is treatment, can it be done from home and any other things that you can tell me.

Thank you so much for any info and god bless and happy holidays.

Dave

Live life to the fullest and enjoy each day!

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Tracy Chicago's picture
Replies 4
Last reply 12/15/2010 - 7:38pm
Replies by: Anonymous, Jim in Denver

I have taken a break from visting the board for a while and just wondering what the latest is on BRAF and Ipi? I remember BRAF was showing measurable tumor shrinkage but it only lasts for about 6-9 months and then there is agressive tumor regrowth. Has anyone had a durable response?

 

And I heard Ipi might get FDA approval but only for stage 4 patients. Is that still true? Has anyone had a durable response from Ipi?

 

Thanks and best wishes to everyone!

Tracy, 3B, NED

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mifis's picture
Replies 4
Last reply 12/15/2010 - 7:36pm

Hi there,

Some of you may remember me. I was diagnsoed with a melanoma in situon my upper arm in May, had a further excision in June and it came back with atypia at the edges, went for another excision in July which came back still atypical at the edges and was told to "stop worrying about it and get on with my life". Yes, that's a direct quote from the dermatologist! I had a gut feeling not to trust that advice, so went for a 2nd opinion at MSKCC in NYC and had the slides re-read,.Their opinion was that there was still melanoma in situ present so I had a further excision on October 20, much wider, by a different surgeon, and had the slides read twice, inlcuding by the same pathologist at MSKCC. This time it came back with CLEAR MARGINS. Hip hip hooray!

The scar is healing well, about 3" long and quite indented because of the size of the piece of skin that was removed. I went to see the surgeon last Friday for a check-up and he had a quick look at it and we had another long discussion about sunscreen etc. Today, I was checking it out in a mirror (it's hard for me to see because of where it is) and it looks like there's a couple of little dark spots in it. I had my husbnad check it out and he said it looks like  little dark pores, like blackheads, or  little scabs (but there's no roughness), so of course, I am freaking out thinking that the evil thing has come back.

What should I do? Is it possible for it to come back SO soon and would a re-appearnace manifest this way?

Thanks, Jennifer

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killmel's picture
Replies 15
Last reply 12/15/2010 - 1:12pm

Hi,

 

I am a newbie here and not sure if I am posting correctly to get some info from MPIPers who are taking or have taken PLX Braf or GSK Braf or IPI compassionate use 

I am  stage 3 unresectable with a few tumors in my leg. First dx 2006. So far, just have had surgeries.

My onc gave me 2 options.

1. Braf inhibitor (Onc says average durable long term response 6-8months) or 

2. IPI compassionate use (Onc says could have severe autoimune side effects, response rate average 20%.)

My onc did mention trials combining Braf & MEK drug willbe coming available. Anyone in a BRAF/MEK combo drug trial?

So here I sit, weighing benefits ve risks of Braf vs IPI. I sincerely would appreciate any feedback.

Thank you so much for taking the time to post a reply.

Wendy

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Rick W's picture
Replies 7
Last reply 12/15/2010 - 12:26pm

 

Links to recent MM research  related articles - all from Year 2010

Cheers,

Rick W

 

International clinical trial tests targeted drug for melanoma

 

Gene therapy for metastatic melanoma in mice produces complete remission

 

Melanoma drug shrinks brain metastases in phase I/II study

 

Melanoma uses body's immune system to spread to lungs

 

DNA repair capacity identified those at high risk for non-melanoma skin cancer

 

Study shows patient-specific vaccines for metastatic melanoma may induce durable complete ...

 

'Co-conspirator' cells could hold key to melanoma prediction, prevention

 

New targeted therapy for advanced melanoma associated with 80 percent response rate

 

The evolution of melanoma diagnosis: 25 years beyond the ABCDs

 

Melanoma rates among minorities in Florida differ from national trends

 

Professor discovers way to slow the growth of malignant melanoma

 

Researchers identify key enzyme in melanoma cell development

 

Tumor target suggests personalized treatment for melanoma

 

New treatment method safe, effective for advanced melanoma patients

 

Interleukin-10 a prognostic factor in treatment with autologous melanoma vaccine

 

U of M study definitively links indoor tanning to melanoma

 

Indoor tanning beds increase risk of melanoma

 

Wistar scientists explain the persistence of melanoma through 'dynamic stemness'

 

Researchers find melanoma not caused by early UVA light exposure

 

Clinical trial to test whether vaccine can effectively treat melanoma

 

Late-stage melanoma results in economic burden

 

The sound of melanoma can help doctors find cancer

 

Melanoma transcriptome reveals novel genomic alterations not seen before

 

Melanoma stem cells' evasive talents

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Terra's picture
Replies 6
Last reply 12/15/2010 - 11:55am

Hi,

My husband is stage IV, we are off his 1st trial because it was not working (randomized to DTIC), but are having surgery in January to remove the spot after having received a third opinion.  I am having difficulty as he is sure he is dying and we are not on very good terms right now.  He has told me that he is extremely worried and scared for his children's future without him and that I am not going to be able to provide for them in the same way.  He is scared they won't travel, play sports, learn about the world.  I know this is normal, scary, heartwrenching that he may not see them grow up, but how much do I listen to.  It is not nice and not making a nice atmosphere for our children who are 3.5 and 1.5 and whose whole lives have been cancer.  What will they think of their mother when he continues to berate my shortcomings whenever he has a chance, even through his body language, when I make amistake or don't finish something like he would want it done, he raises his eyebrows, shakes his head.  He has gone so far as to speak about giving his mother visitation rights in his will because he thinks I won't let them see her (she is not my favourite person, but even if I hated her, which I don't, I would never do that to my kids, that will be one of their most important connections to him if he should pass), and he has also discussed putting some of our assets in her name because she has business experience and he doesn't want me to run the apartments that we own into the ground.  I am not perfect, but neither is he, we both love our children and want what is best for them but I am tired of trying to "prove" to him who I am, I know this is some of the cancer talking but he has always been pretty sure of himself and tries to in his own way to "provide constructive critism" but now with facing death it is constant as he tries to get me "into shape."  He is very close with his mother (not speaking with his sister right now and on and off with his dad) and he is really turning away from me and towards her.  I have asked him to speak with someone with me or by himself, he tried with me once, but didn't like what she said, tried once alone, but didn't like the therapist (I didn't really either) and his mom has said to him that speaking with someone isn't worth it.  Worst of all, I am pregnant, I was on the pill, but now I am pregnant and they have both said I did it on purpose - he wants me to have an abortion and I didn't want to have a third child but have difficulty terminating the pregnancy and worrying how I will emotionally deal with that one day when things (hopefully) settle down.  Really, either decision will give me guilt, feeling as though the stress of another baby on him will kill him, I know it will kill whatever is left of our relationship, and terminating it will be less stressful short term but absolutely awful long-term. This can be embaressing, how can we be going through this and when will it end, I am losing my motivation.  The only thing he appreciates in me is coming to his appointments with him - that is all.  He has mentioned that he was looking forward to our kids getting a little older and us having some time to work on our relationship and try to mend fences, but soemtimes I wonder if I want to mend fences at all.  I  have maintained composure through most of this ordeal and been by his side, and I still will be, but I am less concerned with our relationship and the future of it.  Speaking to others is horrible because I don't think they understand what the cancer may have to do with it and I am having trouble separating it as well.

Sorry this has turned into a novel - not even sure it makes sense.    

 

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Scanphobia again...it sure doesn't get any easier...I want to believe I am still NED...I want to believe it will be a clear...YET...I worry they will find something...People tell me not to worry and think positive...If I think positive and it's not good...then I am totally destroyed...if I think the worse and it's a clean set of scans then I am relieved...this will probably never change!

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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Melanoma Mom's picture
Replies 13
Last reply 12/14/2010 - 3:01pm

Today our 14 year old son starts Interferon. Please keep him in your thoughts and prayers! 

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Anonymous's picture
Anonymous
Replies 7
Last reply 12/14/2010 - 1:15pm
Replies by: NancyD, Tim--MRF, jag, King, Nancy, Amy Busby, Anonymous

n/t

Insert Generic Inspirational Motto Here

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claudia-uk's picture
Replies 4
Last reply 12/14/2010 - 9:07am

My husband has mucosal melnoma which has spread recently.

We received the CT scan results but don't quite understand them. We will have a hospital appointment in a week but it would be good to hear what other people are thinking:

Multiple sub-centimetre pulmonary nodules (left upper lobe 4mm, middle lobe 5mm.

No enlarged lymph nodes

Multiple hepatic lesions. Largest 5.7cm, this is heterogeneous and lies within segment 5/8.

A 1cm peritoneal nodule is present.

No focal bony involvement.

 

Does that all sound very bad? 5cm sounds already quite big.

Husband will start with chemotherapy in a week, but only 2 or 3 cycles and then he will go on to Ipilimumab compassionate trial.

We asked for PD-1 trials, but they are not available in the UK yet. As he has mucosal melanoma he is not eleigible formany trials and he was also tested negative for braf and c-kit, which seems that his only possibility at the moment is Ipi.

 

Thanks for your help!

Claudia

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BarbieGirl's picture
Replies 28
Last reply 12/14/2010 - 6:20am

Diagnosed on my 39th birthday (in October), and had the wide-excision on Dec. 8, 2000.  There was melanoma in-situ found, but the doc got the margins.  (I would have preferred NOT to have had any mel show up in the WLE, but that's the purpose of it!) 

Never, ever, ever did I believe I'd still be alive and kicking today.  I didn't change a thing, other than appreciating life better and not taking things for granted.  I eat what I want, I like a little coffee with my sugar and cream, I'm a coke-a-holic (the kind you drink, not snort!),  I smoke, take lots of meds, get very little exercise----you know, all the BAD things.  Figured if I was gonna die, I was at least gonna enjoy my time left.

The only thing I asked God for.... was to let me live long enough that my grandkids would remember me.  They're now 4-3/4, 5-1/2, 9-1/2 and 11-1/2. (You know how important those halves and quarters are with kids ages!! haha!)  Thank you, God, for allowing me to still be around!

Guess I'll be around to annoy ya'll a bit longer!! =)

*hugz* and love to all who have followed my decade-long journey!!

~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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