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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harmonyvollmer's picture
Replies 1
Last reply 12/2/2012 - 10:46am
Replies by: awillett1991

Hi, I'm new here and I think that I may have FAMM. I'm 23 years old and have had around 10 atypical moles removed with some coming back as having "moderate architectural abnormalities" or just "moderately atypical" and I've had one come back as a "pagetoid Spitz nevus". I have had two abnormal looking moles come back as benign. Every mole that I have had that was atypical in the lab was excised. I have hundreds of moles that look atypical but don't necessarily warrant excision as of now. I have had moles my whole life, and was always warned to watch my moles, but they were all stable until I was about 19. At this time, I got pregnant and I noticed near the end of my pregnancy that I had two bad moles. My doctor suggested this might be due to hormones. But after I had my son, my moles did not stop changing and I typically have several moles removed in a year. I also am growing new moles at an alarming rate. I literally notice bad moles that were not even on my skin a year ago, or that looked perfectly fine a month ago. I have several concerns and I am always anxious about this condition. My first concern is that my paternal grandfather died of melanoma at age 49 in 1964. His daughter, my aunt, died of severely metastasized squamous cell carcinoma in 2007 at age 60. His son, my uncle, was diagnosed with melanoma several years ago, although he decided against treatment and is still fine as of now. My father has had many dysplastic nevi removed throughout his life but never developed melanoma. He has never received full excision, they just do a circle punch and don't do a large margin. My second concern is that my 3 1/2 year old son has developed a few benign looking little moles. They look totally fine, but so did mine when I was his age. I am scared that I passed this FAMM syndrome down to him. Does anybody know if this qualifies as FAMM? I'd like to be genetically tested or participate in a research study but I don't know how to go about doing that. Also, what are the chances of a mole with moderate atypia turning into melanoma, in someone with FAMM, if they don't excise the mole and just leave it on the body? 

Thanks

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Anonymous's picture
Anonymous
Replies 5
Last reply 12/3/2012 - 10:19pm
Replies by: kylez, Anonymous, sharmon, palmspringswalt

Hello,

 

I am new to this form. I am stage 4. My doctor is trying to get me into Merck PD1 trial at UCSF.

Is anyone in the Merck PD1 trial at UCSF and can tell me how you have responded to this drug and what are the side effects (if any) you have experienced. Who is the doctor running this trial and is he nice???

If you at participating in the Merck PD1 trial at a different location, I would still appreciate knowing if anyone is responding to  this Merck PD1 trial and side effects. How often are the infusions??? Do you have to do a biopsy to qualify for this trial??

Thanks you for taking the time to respond to my post.

Carol

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Colleen66's picture
Replies 6
Last reply 12/4/2012 - 1:21pm

I am stage lll, NED after surgery .  A clinical trial was just brought to my attention by my surgical Oncologist yesterday.  There are three options available to me as I am considered high risk.  A clinical trial,. Interferon or watch and wait.

The trial has 3 arms consisting of a) standard interferon treatment.   B) high dose ipi.  C) low dose ipi.  The aim is to see if the ipi with high risk would be better than interferon at delaying recurrence and/or stopping progression.   My Oncologist even said the words "could be a cure for those at this stage"

here is the trial http://cancer.osu.edu/patientsandvisitors/cancerinfo/clinical_trials/Pag....  I am fortunate to have my doctors activily involved in these trials.  This trial is being held nation wide.  On the Page pick melanoma, next Page choose the second trial ECOG-E1609, Dr Kendra.

Any thoughts?

Colleen 

Live!

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Note that you will have to sign up for a free membership from Medscape to read the following information:

 

Here are the newly published articles in your area(s) of interest for November 30, 2012:

Skin Cancer

Accurate Identification of Melanoma Tumor Margins

 

Abstract and Introduction
Abstract

More than 8000 people die of melanoma in the USA annually. Although early detection of melanoma results in a 5-year survival of up to 90–95%, those presenting at advanced stages have dismal prognoses due to ineffective systemic therapies. In general, patients with early melanoma can be successfully treated with local surgery. However, approximately 8–20% of lentigo maligna melanomas recur, leading to frequent re-excisions, cosmetic issues and, as a result, increased medical costs. An accurate evaluation of melanoma margins is important to prevent local tumor recurrence and progression to advanced stage disease. This review will discuss the role of clinically based noninvasive tools, histology, immunohistochemistry and molecular technologies in melanoma margin assessment. 

 

https://login.medscape.com/login/sso/logout?notyou=yes&cid=med&urlCache=...

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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DeniseK's picture
Replies 4
Last reply 12/2/2012 - 7:55am

Hello Everyone

It's amazing how things change from day to day.  I thought I had a perfect game plan.  I was going on Z and hoping for the best.  I was thinking maybe I'll be one of those lucky ones that I could live years on it.  Well I'm still hopeful but I found a trial that is randomized Zelboraf alone VS Zelboraf with Mek inhibitor.  I figure well I was going to do the Z anyway.  The way this one works is 1-28 days of Z then 1-21 days of inhibitor or Placebo.  Seems like I would benefit either way.  Here's the link to the trial http://clinicaltrials.gov/ct2/show/study/NCT01689519?recr=Recruiting&cond=melanoma&state1=NA%3AUS%3ACA&state2=NA%3AUS%3ANV&age=1&rank=11&show_locs=Y#locn

My question is, if anyone knows, is when do they typically start recruiting.  They are recruiting in Encinitas, CA but not in San Francisco where I would need to go or anywhere else for that matter.  I sent an email yesterday asking and called today and left a message but haven't heard.  I'm supposed to be starting Z on Monday and I want to know if I should hold off so I can qualify for this trial, but if it takes a couple months then I probably won't have the time. 

Sorry for all my questions, but I'm in a time crunch now and it doesn't look like I'm going to get any answers today.

Thanks for ALL your help!!

Denise

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

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doriniel's picture
Replies 9
Last reply 12/2/2012 - 6:18am
Replies by: Anonymous, shelbug66, doriniel, Gene_S, awillett1991, POW

Melanoma now resistant to zelboraf after 14 months. What do I do next. Oncologist thinks I should do yervoy while my turmor load is small. I'm thinking about trying to join a clinical trial. I live in idaho so would have to travel to be involved in a trail. I would appreciate anyones thoughts.

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Owl's picture
Replies 6
Last reply 12/3/2012 - 1:58pm
Replies by: Owl, Gene_S, POW, jag

Dear all,

usually I am a passive reader of this forum. I have learned a lot about melanoma from you and very thankful. It seems that this page is the only place where you can really educate yourself about melanoma. We live in Germany and I have not yet found such professional and helpful webpage in German.

Until now things seem to work out quite well for my husband. He started IPI in May 2012. During the first weeks the disease seemed to progress (from what was visible, around 15 subcutaneous tumors). Then the subcutaneous tumors shrank and dissappeared, one after the other. At those places with hair, he lost the hair, and it grew white hair. Week 12 scans showed stable desease (though we had seen tumors shrinking, but we blame this on the 3 weeks gap between scans and starting IPI). Week 16 scans showed decreasing tumors, only a couple of subcutaneous tumors in the neck were constant in size. Now we received results of week 24 scans. Lung tumors have almost disappeared (biggest one was 10mm, lymp node in abdomen, which was 14mm is now only defined as suspicious. Tumor in testicle has disappeared. Further no new tumors, brain is free. Only the tumors in the neck area make us continue to worry. They have increased. We had seen them growing during the last couple of weeks and worried that there might be growth or new ones somewhere else. Therefore the scan result is not too bad. What makes us worry is the further procedure the docs are proposing. They would like to start Zelboraf (B-RAF positive). This sounds to us such as IPI has not worked. But we have seen it working and we believe that a reinduction would work as well. Fact is that my husband is currently in a trial (IPI comparison 3mg vs. 10mg) and a reinduction is only possible with 20% growth (this seems not to be the case).

We know that Zelboraf can be a good option but we also learned that it is probably not as durable as IPI. We have always thaught of Zelboraf that this is a solution when the tumor burden is big and any other therapies have failed.

The second option they mentioned is an op of the subcutaneous tumors in the neck. It would be in an area where they have already done the lymph node dissection and it is in the area of the aorta. It sounds tricky.

Until now we have only talked to the docs at the phone and they left us with the feeling that they are also not sure what to do. They did not mentioned radiation or IPI reinduction until we asked. We still don't have an answer whether radiation is an option. As we are currently moving house we will also change treatment center. This doesn't make things easier as docs in the old clinic tell us that decisions will be made by the new treatment center. Well, now is weekend and I won't have a chance to speak to them before Monday.

It feels very confusing. Thankfully we have educated ourselfs to ask the right questions but off course the docs are supposed to be the experts.

Has anyone out there similar experiences with partial response from IPI and only subcutaneous tumors left? We still have the hope that the response for these tumors might only be delayed. On the other side, see them growing (they have doubled in size during the last 4 weeks) , doesn't feel right.

I heard that in some countries (probably not Germany) and tumor injections with IL-2 had a very good response. Has anyone experiences with this?

Thank you for being out there,

Jenny

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des7879's picture
Replies 8
Last reply 12/2/2012 - 2:49pm
Replies by: Johnfdc7, squirrell68, Anonymous, kylez, des7879, POW

 

UP-DATE melanoma cancer has spread to the brain

just to let everyone know my wife had a small stroke on decemebr the 15th she was admitted to derby royal where her condition went from bad to worse to cut a long story short , sue passed away on january the 12th ( ten weeks after being told she had cancer ) she was holding my hand as our wedding song played ( unchained melody ) at 2.02 of the record she passed away so peacefully and with no pain at the age of 43 i miss her so much but i have to carry on for our ten year old son who now needs me more than ever

 

thank you 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Hi

My partner has melanoma skin cancer that has spread to the brain and brain stem, she has 3 in the stem one 2.5 cm already in a few weeks and god knows how many in the brain itself. They have not been able to find where it started in the first place only that it is melanoma cancer

Over the last few weeks she has started to get lumps over her body under the skin. Has anyone else had this ? They won’t say how long she has left but after reading so much on this cancer and how fast things are growing i don’t think it can be too long

UPDATE

She has now had 5 days of radiotherapy this has made her very tired and weak . there are going to do a C.T scan to see where else the cancer has spread to as these lumps keep popping up here and there on her body we have to go back on the 18th of December . Everything seems to happen at such a slow pace no, one seems to rush in doing anything. They say next step in treatment will be chemotherapy i just don’t know what to expect any more in all this

Does anyone know how things will progress and how tuff things will get for her and us

(Please excuse my spelling and things I’m not the best sorry)

 

Des

UK ENGLAND

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dian in spokane's picture
Replies 2
Last reply 12/1/2012 - 9:17am
Replies by: DonW, vivian

 

Well, I know some of you will bre  curious about my treatment, so I'll tell you all about it now. Last week I went in for radiation 'set up', which mostly just consisted of some measurements being taken while I was lying flat on a metal table, just like the table any of you might have been on for a ct scan or mri. A CT scan was used during this where they tracked the movement of the nodule in my lung while they were doing the measurements. I also got three tiny tattoos, used for targeting purposes, one on each side of my chest and one right in the center.
 
Yesterday was my first treatment, it was easy and painless except for the problems I have lying on my back. BUT, since I was allowed to eat a regular breakfast, I took a pain pill, and followed that up with an anti anxiety pill on my way there. So that helped me relax enough that the back didn't start hurting till right at the end.
 
Today, I was, of course, on the same kind of table, but the machinery was quite different. THIS is the actual machine they used: http://www.varian.com/us/oncology/radiation_oncology/clinac/
 
It was easily the simplest and most painless thing I've ever done to fight my melanoma, not even as stressful as a PET scan. I had to do no kind of preparation, no restrictions on my eating the day before or that morning, I just had to lie there. The machinery moved around me, and occasionally moved me..so once in a while the table was rotated, but mostly the arms of the machine moved around me.
 
The first half of the time in there was mostly scanning. they have to follow the way the tumor moves with breathing. The arms rotate around and shoot their radiation beams into you from many different directions (16 I am told) and for those who asked, there is indeed some laser involvement, but used for aiming an targeting. The radiation crew, while all this is going on, is out in another room, a big U shaped room that looks like the bridge of a spaceship, with all kinds of computers, and one with a big view of the room and me.
 
I kind of felt like I was in a space ship too. With some futuristic fullbody tricorder. just an illusion. It made robotic noises, like R2D2, and it was over right about the time my back was starting to hurt me.
 
Because this is unlike traditional radiation, the side effects can come faster and I'm told I could start having some early side effects, in terms of fatigue in the next couple of days. I did interferon back in 03/04 and can't really imagine any fatigue being worse than that, so I'm prepared. Other more serious side effects like, sore throat, skin burns, esophogitis and such could come later, but really I could just get away with minimal side effects, so that's what I am looking forward to. But I'll keep you all posted on the timetable and severity of such things
 
I have 3 treatments next week, mond/wed/fri, then one on the following monday. It will likely be 2 or 3 months before we scan again to see if this therapy is working. And hopefully it all goes without a hitch, I'll be ready for camping by april!
  
Dian

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Anonymous's picture
Anonymous
Replies 0
dellriol's picture
Replies 7
Last reply 12/2/2012 - 9:28am

Since my stage IV diagnosis in February, I have managed to stay very positive.  I've come back a long way from not feeling the right side of my body, to swimming laps, riding horses and babysitting grandbabies.  But these holidays are HARD!!! The uncertainty of what my future in this battle holds really gets me down. I realize, and keep reminding myself, that nobody is guaranteed another day, but I also know my prognosis.  It doesn't help that I watched as cancer took my Mom and my father-in-law.  Most o the time I'm good, but a song triggers a memory, or my grandson's smile makes me think how bad I want to see him grow up, and I melt down for a few minutes before I can pull myself together.Are others feeling the same stress? 

This ain't no hill for a stepper.

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POW's picture
Replies 4
Last reply 11/30/2012 - 12:41pm
Replies by: Gene_S, awillett1991, Anonymous, lhaley

My brother (Stage IV with brain mets) has had many CT scans and MRIs but never a PET scan. Nobody at the VA or at Moffitt ever suggested one. Is there any particular reason to use PET vs CT vs MRI?

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