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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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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davekarrie's picture
Replies 5
Last reply 12/14/2010 - 12:17am

I posted yesterday that they thought my lymph nodes were negative, but found out yesterday that they found melanoma cells in 1 lymph node on my right side, now they must go in and remove many more. Now I have to go back to mayo for more surgery, then what?  Just a rollercoaster ride that is tough, not to mention that we found out we are expecting and we are trying to buy/sell a house, what a crazy month it has been. I am young and healthy though so I know I will beat this.  Wanted to get advice for others with stage IIIa to see what treatments are available and/or useful. have read many things about inferon and the like.  Also, should they put me through  a PET scan and check LDH levels as I haven't had those yet. thanks for any input/advice.

Live life to the fullest and enjoy each day!

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melanomafighter's picture
Replies 16
Last reply 12/14/2010 - 12:15am

I just wanted to let you know those of you who doubt Interferron there is hope.  I had my first scan since my LND and interferron injections and it was negative.  I was told I took well to the interferron and my bloodwork and weight was back to normal...keep in mind I did not complete the year program I only did the high dose and three weeks of the low self injections  Thought I would share the good news with you all  .Good luck to each of you  NED for the first time since diagnosis.

Remember what's important and make everyday count

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Carmon in NM's picture
Replies 3
Last reply 12/13/2010 - 8:09pm
Replies by: Lori C, lhaley, King

On Wednesday I'm scheduled for a full body CT and brain MRI to see if I am responding to the carboplatin/taxol/temodar Phase II trial I'm on. For such a long time (nearly two years) I didn't even think about scans but after brain mets in June followed by an adrenal tumor found in September, I find I am definitely thinking about this one. It isn't with the terror I had during that first year but flashes of anxiety are definitely popping up.

Plus, my oncologist, who I absolutely have loved and had total faith in, announced she is leaving UNM to take a wonderful position in the northeast in February.. She has assured me that all of her patients will be assigned to top oncologists and that she will leave them with a complete treatment plan. I trust her in this too and she has been such a caring doctor that I can only wish her the best - she deserves a life too!

The second infusion was much harder than the first one. I was hit really hard on the third day, no serious nausea, just extreme body and nerve pain. Also, the oral temodar caused me to faint one night resulting in a dislocated rib. I was so mad! It wasn't bad enough that I felt so horrible, then I couldn't breathe either! I actualy questioned my resolve to get through six cycles but just like the first time, on day eight it all passed and my usual optimism set in and I knew I can get through seven really hard days if it means defeating this beastie.

I find that about all I can manage to eat on days three through seven is broth and soft foods. It isn't that it makes me sick but that I have no appetite at all so I stick to nourishing things that I can easily get down. But boy, when day eight gets here, my appetite comes back with a vengence and I eat everything I can for the next three weeks to try to maintain my weight. Guilt free eating!

So if the scans show no new tumors and stable or reduced disease, I'm on for four more rounds. The next one on Dec 20th which means just like Thanksgiving, I'll be feeling the worst right through the holidays. But hey...I feel that I'm not doing this just for myself, I'm doing it for my husband, my family and all of the friends who have been there for me every day while my husband works out of state. The friend who rushed me to the hospital and saved my life when an undiagnosed brain tumor began bleeding into my brain. And the ones who have showed up every day to feed our horses and take care of outside chores when I've been too sick to.

I know this will sound impossible to newly diagnosed people, or those still in the first years of fear, but in many ways this disease has been an incredible gift by bringing me closer to the people I love and of learning to live fully in each moment with humor and joy. For everone else out there waiting for results, struggling to get through treatments, or caring for loved ones who are facing those things, I wish you peace and joy through the holidays and beyond! Carmon

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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sharmon's picture
Replies 11
Last reply 12/13/2010 - 4:44pm
Replies by: Jim in Denver, sharmon, Anonymous

Hi everyone,

Brents scans this past last week, after 9 months, where mixed.  Some measured a tiny bit larger than 2 months ago, but not as big as the baseline scan from February.  His doctor did not take him off the trial, for which he was grateful,  saying there is not significant growth.  Yesterday he is telling me he has some strange (discomfort in the lung area near where the growth was measured to be the most).  He will be scanned again in February. 

We are looking into the plan B for the next treatment.  He was retested for a whole list of mutations and is negative.  The NRAS and GNAQ results are still not available.  He was Braf negative when he went on the trial.  The arm  of that  trial he started in Feb. was for solid tumors and he did not have to be  Braf positive to begin treatment.

He feels fantastic,  great appetite, high energy, and no real pain to speak of.  His breathing is good also. 

We know that CT scans can show different things at different times and are not perfect.  This could account for the difference from this scan to last.

We also know that most trials require that you not have previous treatment with inhibiitors.  I am aware that it is not going to be easy to move onto the next treatment and want to have some options in mind aheard of the game.

Anyone out there who has failed  a MEK inhibitor and has moved on to another trial?  Your input and feedback would be greatly appreciated.

God Bless you all.

Sharon and Brent

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dian in spokane's picture
Replies 9
Last reply 12/13/2010 - 8:18am

Done! I am done! It seemed like the wait to get my first shot in this trial was endless, but the 6 months of actual treatment has flown by.

Today I got my last shot, and went into the trial record books as a success, or at least not a failure<g> It's only been the last couple of shots that had a reaction before I left the hospital (I have to stay for the first hour) Today, as expected, my skin reaction was much more pronounced. If things go as expected I'll have my worst swelling so far, and I''ve been warned to watch for systemic reactions. But I am just a few blocks from the hospital, so I am not too concerned about that..only about the swelling to come. I am icing my thigh and have cozy clothes and no demands.

We are staying overnight here, then driving back to las vegas tomorrow and I don't have to fly again till monday, so hopefully by then the swelling will be down.

We've made quite the trip out of this LAST trip down here. We flew into Las Vegas to have a couple of nights of Hannukah with bob's dad ( I need to update the off topic board on Joe!) then drove down here on tuesday. This last visit included a skin test, which we did on Wednesday morning. This is a simple thing, a tiny injection just under the skin on the arm. then they mark it and 'read' it 48 hours later. So we did that and had all afternoon Wednesday and all day Thursday to hang out at the beach! We are staying on the Balboa Penninsula, and we've had a dandy time escaping the 2 feet of sloggy, refrozen snow in Spokane.

Along with the skin test on Wed., they drew blood. About 3 or 4 vials in my blood just stopped flowing, and so I got jabbed a few more times before they had success getting a vein for the OTHER 4 vials. yikes!

Today was my last visit to the Hoag. The rest of my followup will be done via phone calls and emails. And my doc will be sharing scan reports and labs on a certain schedule..every 6 months I think. My next scans aren't scheduled till March, unless my local Oncologist decides to move them up to January. I see him next week.

I will keep my fingers crossed that this vaccine has been effective for me. I remained NED a long time (11 months) while my cell line was growing, so I'll never know, if I stay NED, if it is because of the vaccine, or if I would have stayed NED anyway. But I am constantly reminding myself that it's been over 2 yrs now since I moved to stage IV, and 19 months now that I've been NED. It's a fabulous thing to be thankful for.

Dian

 

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/12/2010 - 7:35pm
Replies by: Sharyn, Anonymous

It has been awhile since Sharyn has posted. I am worried. Anyone know how Sharyn is doing????

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