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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mrsmarilyn's picture
Replies 8
Last reply 2/6/2012 - 10:00am
Replies by: mrsmarilyn, jim Breitfeller, jag, Gene_S, Anonymous

Hello

My last post was pretty dramatic as we were told that the only way to reduce my brother's tumor on arm was amputation.  He did not  do that - and went with radiation for two weeks instead and he is getting reduction.

 

After the radiation, Sarah Cannon is suggesting a new clinical trial - AMP targeting PD 1 - instead of Yervoy?!  His tumor is very large in his upper arm and has three very very small spots elsewhere.  I know Yervoy is slow to respond - but this a new clinical trial is a Phase I -  it is a difficult decision.  The targeted pathway is described on several websites.

 

Is Anyone planning to be on this clinical and also what do you think about this brand new approach vs. Yervoy.  He has already exhausted Braf targets with an excellent outcome over 24 months except for this tumor in shoulder/arm that the Braf/Mek did not touch.

 

Thanks-and he is glad he kept his arm - but wants to remove the large tumor.  Best wishes and prayers - we are not giving up!! (as our dear friend Amy Busby told me)!!

Mrs Marilyn

sister of Gary Stage IV

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Hi,

Its been a while since I posted an update on me. I just went for a full oncology workup last Wednesday......PET/CT scans, blood work, and clinical exam and a one hour discussion with my melanoma oncologist and melanoma nurse practitioner. Everything is normal, I am NED. NO EVIDENCE OF CANCER!!!! I am working for 5 months now, feel great and LIFE IS GOOD! One year ago we were discussing right leg disarticulation (amputation from the hip socket). I am vigilant, do frequent body skin checks and daily leg checks, looking and feeling for new growths, lumps, bumps etc. I did four doses of Ipilimumab (yervoy) at 3mg/kg last December 2010 to February 2011. I have been NED since my PET/CT scan two weeks after my 4th Ipi dose.

Thank you all for being on this board. This is a wonderful support and information network! I may not post as often these days but thats because I am very busy living life and melanoma isnt taking up all my time right now!

Vermont_Donna, stage 3a, NED

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Lisa13's picture
Replies 24
Last reply 2/4/2012 - 11:08pm

Today, I had my brain MRI appointment to see the gamma knife procedures I had 2 months ago. 1 is gone and the other one is shrinking - so it's good news.  They found 2 small mets today which devastated me, so I have an appointment on Monday to get gamma knife done again. They really want to send me on WBR, but after reading the webinar on Melanoma International, I'm sticking with their opinions. I had 2 and they're gone, so this other 2 will hopefuly go away as well. Every 8 weeks, I'll see what comes up and may be lucky to only have 1-2 more arrive for awhile.  You just don't know. 

I'll also be starting ipi again as it shrunk 50% and even some disappeared and now all of a sudden they have marginal growth. My lymphocytes are back up to 1900, so if it can do the job shrinking again, it could also work it's magic inside my brain.

I'm terrified, but I have to believe that sometmes brain mets don't come all the time. I've met numerous people (mostly woman) who had 2-3 and have been hear for 3 and some 5 years.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Charlie S's picture
Replies 12
Last reply 2/4/2012 - 8:15pm

For the supposed road to happines, with a wedding, it is something new, something borrowed and something blue; with melanoma it is scans of nothing bigger, nothing smaller and nothing new.

No, I'm not getting married, but I sooooooooooo want to divorce myself from melanoma; but it always bites me in the ass with symtoms anew, a treatment borrowed and certainly a sky that is blue as it drapes a similar cloud over my mind.

I never wanted to marry melanoma, it was a forced marriage. Even worse, it is not clear to me that this forced marriage was a man or a woman or maybe just an entity.  My mind tells me it was the latter, but oddly it has been my constant mistress, prodding me for constant intimacy, demanding that I look at her, pay attention to her, touch her and feel her and feel the wrath if I dare look the other way and shun her glance.

Or it could be a man disease that seeks my attention and wants to punish me for inattention and seeks revenge on my body as a result.

Either way, I just don't get it. 

No, I'm not having sexual orientation issues, but as I approach a milestone in my life; I have to say, as far as melanoma is concerned.............I still don't get it......and that, to me is the lesson and what is to be learned.

 

Cheers,

Charlie S

 

 

 

 

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Anonymous's picture
Replies 1
Last reply 2/4/2012 - 6:31pm
Replies by: Janner

Hi all, I have had Melanoma since 2006 and thought that it was insitu, well it wasn't in Nov of 2010 it had spread to my forearm from my finger and so far have had 5 surgurys including all my lymph nodes removed under my left arm and was doing pretty good until I had interferon last Feb, made me so sick that I could not continue once I got home. So it was just watch and then the end of this past November had another lump appear on my arm and my surgeon removed it and the report came back Melanoma. He sent me for another Pet Scan, my last one was 6 months prior to that and it was clear. This time it was not clear the cancer has spread to  my lungs and am now on my second round of Yervoy. I am so hoping for good results with this drug because I figure this is the only thing that will help me... I am having some itching with this so far and the doctor is very pleased with my progress, such as blood work and chest xray but really don't want to get my hopes up too high. I am trying to research on being Braf Negative but so far haven't had much luck, would someone here be able to help me?  I am 68 years old but very active and I feel good , a person would not know that I have this horrible cancer growing inside me.  I have been reading alot of posts here and it seems to be a good place to be (not that we want to be here).  Thanks  

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Maxximom's picture
Replies 8
Last reply 2/4/2012 - 5:29pm

Hello.. I am new here and I need some help. First some personal info. I am a 80 year ols. I had a CT scan in December for a totally different reason and the results came back showing a mass in my upper left lung consistant with lung Cancer.. I never smoked..so this was a shock,,the follow up Pet scan lit up where the mass was along with one node. A core biopsy of my lung came back with Metastatic Melanoma..even a bigger shock..since I have never had any type of skin lesions, of any kind. I met with a Melanoma specialist at OSU, James Cancer Center in Columbus last Thursday. The skin check reveled NO skin lesions of any kind..so the Primary site is unknown. I was given 3 treatment options..Temodor,Ipi or possibly Vemurafenib if I am B=Raf positive. I want to be as aggressive as possible..so I have pretty much decided not to go with the Temodor..the doctor wants to start me on the Ipi as she feels it has longer lasting  efects. I have tried to research as much as I can..and I am wondering if that is the way to go or not. The doctor feels that since the mass in my lung is causing no problems and I am having no symptoms that the Ipi should be the first line trestment. My thoughts are.. that I may or may not respond to the Ipi and it would ytake 4 or 5 months to know that..meanwhile this mass could grow and start to cause me problems..why not start first with the Vemurafenib..and shrink the mass..I would know very quikly..within a month or so if it works..and then try the Ipi (if possible) for long lasting results. Of course I am a total novice at this and the doctor has a lot more experience than I have. I have not built up a relationship with her or a feeling of trust as yst..I  did like her. I have not gone for a second opinion as yet..the nearest place for me to go would be Cleveland Clinic.. but franly when I looked on line..they didn't seen to be to big on Melanoma. I spoke with Johns Hoplkins and since my Son lives one hour away..it is a option. But I would have to stay here in Columbus for trestment. I live alone (daughter near by) I lost my Husband of 60 years 18 months ago and had been a full time caregiver and advocate for him. I caught so many medical mistakes and devrloped such a servere distast for doctors during that time..it is hard for me not to be a "control freak" when it comes to medical issues. My issticts have always been to go where I have to to get the best possible treatment..but the reality is// I am no longer a young as I was or as independent and traveling all over the country is no longer an option.I  really need to get some input here..so many of you have been on the journey that I am setting out on..can you help me? I have a appointment tomorrow at OSU to tell them of my decision...of course if I turn out to be B=Raf negative..then it's the Ippi..I look forward to replies.God bless you all

Joan

 

 

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djdumaine's picture
Replies 4
Last reply 2/4/2012 - 2:50pm
Replies by: aldakota22, Mike N, LaneyMcg, Anonymous

I'm heading to my oncologist today to have a pain under my arm looked at....it's all too familar of a feeling that I had 8 years ago when my melanoma spread to the lymph nodes under my other arm.  Feeling scared and nervous that the beast has returned after 6 years of NED.

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walesgirl's picture
Replies 3
Last reply 2/4/2012 - 11:13am

Greetings my melanoma clan...I"ve not posted, but I read everyday....I do now have a question...stage IIa diagnosed 9/2011...scalp...2cm around, clean margins, neg SNB...however, felt a hard nodule just on the edge of graft about a month ago...had hit my head there and had a sore, but it cursted, and then here's this...derm is almost positive it's a local recurrence which I understand is so not good...anyone have experience with local recurrence, any encouraging info?? thankyou so much...really

 

beattiesa

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himynameiskevin's picture
Replies 9
Last reply 2/4/2012 - 12:54am

Well, I had a seizure yesterday, apparently one of the tumors in my brain, even though the biggest is only about 1cm, the swelling around it appeared to have disrupted some functions and a seizure occurred. Luckily I was at home, right here. I started to feel, a bit funny, kind of dizzy or out of it. I got up and walked to Brenda, as I was coming around the couch, my vision and ability to stand started to go, I remember telling her something was wrong, to call an ambulance, and I started saying a few panicky, emotional last words, because I thought this was it. It was really scary. Not knowing what was going on, I thought this was the end of me. I heard her yelling my name and everything went black. I woke up disoriented in an ambulance maybe 25 mins later. It wasn't until I was in the ER that I became fully aware of what was going on and what happened. Long story short, it was most likely the swelling that caused the seizure, they watched all my vitals for a couple hours, did a CT scan of my brain, called my doctor and gave me an anti-seizure medication. Then sent me home.

This morning I went to get my mask fitted for the SRS I'll be getting soon. Good news is, it's finally under way. Next Wednesday, all 4 will be getting zapped. The bad news is the  detailed "mapping" MRI they gave me last Friday revealed four new miniscule ones the last standard MRI didn't catch. They're tiny though, too small to even zap at this point. So in four weeks I'll have another MRI and they plan to zap out the remaining four right around then. Though they didn't want to do it, today they decided to put me on a low dose steroid to stop the swelling in my brain, I know it's not good for my immune system and past treatments, but it's kind of necessary right now, they plan to taper me off as soon as possible.

Lastly, tomorrow I'll be seeing an oncologist I haven't seen in a year and a half to be referred to the oncologist who's been taking care of me for the last year and a half. A CT of my chest will be ordered and in about two weeks we'll discuss that and any other possible treatments for me to try out.

Always hoping for the best.. for all of us.

Thanks for reading,
-Kevin

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Lisa13's picture
Replies 2
Last reply 2/3/2012 - 11:51pm

If anyone deals/knows about ipi or those amazing U.S Dr's who know a lot about it, I really need help.

On my 16 week scan, I had 50 percent shrinkage and disappearing of my lung mets. At the end of nov, 2 weeks after gamma knife for 2 brain tumours, my lymphocytes were extremely low, as well as other blood results were out of whack and k believe this was the time the mets started to grow a bit. Now, my lymphocytes are 1900 and I have marginal growth and now 2-3 abdominal lymph nodes swelling. (which is obviously new).

how do we know this isn't inflammation from ipi and my body is back to doing what is was doing before? Because ipi worked forme, I'm going back on it, but I wish I knew a dr. that knew everything about this drug, so we may know some answers. Even my own dr. has no way of knowing for sure. Having the brain mets removed from gamma was great and 1 is actually gone, but right after this, things changed for me, so I guess I just really need to understand.

Anway, gamma knife is on tuesday and I'm going on ipi again 1-2 weeks after gamma.

I also want to know if anti pd-1 is accepted for people who have brain mets.

lisa

Many impossible things have been accomplished for those who refuse to quit

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bball's picture
Replies 4
Last reply 2/3/2012 - 10:58pm
Replies by: Gene_S, jag, LynnLuc

anyone doing or know of someone who has been doing Gerson . Very hard to do.?

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mob's picture
Replies 1
Last reply 2/3/2012 - 10:35pm
Replies by: bcl

 

 I hope you will help Canada move forward on this important child protection-skin cancer awareness initiative and vote for a federal law ( The industry reps have already called out for support to oppose the pediatric society.. let's show them we care about this global issue too.. 

 

Please click on link ( or copy and paste) and vote...thank you!  linda ( bcl.. spam filter hates me) 

 

http://www.cbc.ca/news/yourcommunity/2012/02/should-minors-be-banned-from-tanning-salons.html

 

The Canadian Paediatric Society (CPS) published a position statement Friday calling for a countrywide ban. 

"This is a serious cancer risk, and children and adolescents are not fully aware of the risks they are taking when they step into a tanning bed," said Dr. Richard Stanwick, the organization's president-elect and co-author of the statement.

Currently, only Nova Scotia and Victoria, B.C., outlaw those under 18 from using tanning beds. New Brunswick has voluntary guidelines that keep kids out of tanning salons. 

The CPS says 25 per cent of Canadian youth between 13 and 19 years have used a tanning salon.

The World Health Organization, the Canadian Medical Association and the Canadian Cancer Society have issued similar statements about yuong people and tanning. 

Should minors be banned from using tanning salons across Canada? Or is leaving the issue up to provinces and cities enough to protect children? Let us know what you think. 

 

 

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LynnLuc's picture
Replies 1
Last reply 2/3/2012 - 8:50pm
Replies by: Fen

 

I would like to thank everyone for the outpouring of support that you all have shown my mom today. She is doing quite well in ICU right now, and is about ready to go to sleep for the night. We will keep everyone posted tomorrow! Thank you all again.

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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LynnLuc's picture
Replies 6
Last reply 2/3/2012 - 5:44pm

 

Good News!

We saw my mom a little while ago, and she is extremely excited to say that she has no speech issues! She feels clear headed and can even see better. About as good as we could hope for at this point. She should be in a room soon, and hopefully she'll be making the next update here. Thank you all for staying in touch with us. I've forwarded the messages to her.

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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lhaley's picture
Replies 13
Last reply 2/3/2012 - 4:58pm

Did the brain mapping this morning. Pre admit, and then met with a trial nurse.  I've entered a brain met about a dura lining.  The best advantage was the meeting today with the research nurse who also had been Dr Asher's nurse for several years. She will be in the surgery tomorrow also.   She was so informative.  Went over the surgery step by step.  Answered every questions and relieved both of us.

Everyone who examed me today agreed that the steroids have destroyed my body.  This is going to be an issue a long with just normal recovery.  Hopefully they can remove the entire tumor and the edema will start to leave.  I do realize that surgery itself inflames the brain.  

I am soooo ready for this. I realize that this will take some time but I plan on getting my health back, therefore getting my life back. 

I've asked Lynn to update this site once my son updates my caring bridge site.  Actually I'm sitting in a hotel right now with my husband and my son has flown in and we are waiting right now for the shuttle to bring him.

I hope good news is posted that the entire tumor can be removed (location has been the problem). 

Linda

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