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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fenny's picture
Replies 12
Last reply 11/7/2011 - 10:46am

     HI all! I'm a Chinese from Fujian Province, the southern part of China. My sister was diagnosed with Stage I mucosal melanoma back in Dec 2009 and found to have advanced to Stage IV with PM (pulmonary metastasis)  this August. So far, she has gone through two surgeries and 13 cycles of chemo therapy. She has been on the following medication (said to be outdated by Catherine) from August  till now. 1. TMZ0.3g d1-5  2. Sorafenib 400mg BID (for PM)   3. Bevacizumab, Avastin   300mg q2w;q4w   Early last month, she went to Beijng for the third time for her treatment and her doctor said one lymph node in her left lung seems to go away and another one in her right lung seems to shrink. But I just wonder if the lymph nodes can go away so easily and start to doubt the PET/CT result. Did they make a mistake when doing the scan or when reading the scan result? The medical standard here in China is comparatively low and there are very few melanoma specialist except one named Guo Jun in Beijing Tumor Hospital. As melanoma patients all over China flood into Beijing to turn to Guo Jun for help, he is very proud and puts on airs when treating the patients. My sister went to Beijing 3 times and not until the third time did she see Dr. Guo in person at his office.  He translated a book titled "The Prevention, Detection and Treatment of Melanoma", written by Catherine, M. Poole, a 22-year survivor of cutaneous melanoma and founder of MIR (Melanoma International Founation). I called Catherine 3 weeks ago and she was very patient with my questions on the phone. She recommended me first ipilimumab (approved by FDA this March) and then anti-pd1 (a new clinical trial medicine). No idea whether you guys have heard about anti-pd1 and anyone is now on anti-pd1. Please let me know if you are and at what places in USA can patients have access to this new clinical trial. Catherine said that Dr. Guo Jun's Rx fails to keep up with the latest development in melanoma treatment, which freaks us out and takes away our confidence in the most authoritative doctor in China. sadThat's why I come here to seek more info from you all.

     As I mentioned above,  I doubt the result of my sister's PET/CT, i wonder if you know any doctor who's willing to read my sister's PET/CT scan she had in August. Sorafenib, a targeted drug for her PM, is kicking the crap out of her and killing her. I wonder if it is necessary for her to take this terrible untolerated drug if she doesn't have PM at all.  So please help find us a doctor to read her PET/CT scan. Thanks a lot in advance. BTW, a stage IV melanoma patient left me a message saying that he is now on pazaponib, a clinical trial at  Chao Comprehensive Cancer Center in Irvine California. It has stopped his progression for 14 months since he was discovered to be in Stage IV. Does anyone of you know about this new drug and is now on this drug too? Please let me know. This patient also mentions that he's taking high doses of resveratrol and green tea extract. Do you take some supplements to help stop or slow the progression. Please keep me informed. Thanks.    Our family is now in great confusion, not knowing whom to turn for help and how to continue my sister's treatment. Please offer whatever advice and help to  prolong my sister-in-law's survival. I really wish a miracle would work on her.  Many Thanks to You All!

 

 

 

 

    

    

  

 

Make Each Second Count!

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Replies by: Anonymous, BrianP, JerryfromFauq, BarbieGirl, bradcope1, Karin L

It would appear that the general approach may be viable.  The question is "Is it to the point that the viruses to be used are undertood and modified and will hold to the changes made to them without joning with the host genetic material and causing extra problems.  The following articles provide some  info as to the current state of this approach.  The last article I list is from the Lativian Center that has been working on this area for over 40 years.  They have a treatment called: RIGVIR.

This general approch is under investigation at some US centers.

 

http://biotech.about.com/b/2009/01/19/cause-for-caution-in-virotherapy-r...

[http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=...]

http://www.nature.com/cgt/journal/v9/n12/full/7700535a.html

http://www.jci.org/articles/view/41431

http://www.thedenverchannel.com/news/22425106/detail.html

    HERPES IN CANCER TREATMENT: Researchers at the University of California, San Diego are testing a type of immunotherapy for melanoma using engineered herpes viruses. Using a needle similar to that used for the flu vaccine, researchers inject the herpes virus into a melanoma lesion. The idea is the presence of the new virus alerts the body's immune system to attack the cancerous area. Daniels said the virus is engineered to be safe for non-cancerous cells, and the idea of using viruses to fight cancer has been around for hundreds of years.

http://www.ncbi.nlm.nih.gov/pubmed/18226503

*****************************************************************

http://www.latvia.travel/en/oncology-%E2%80%93-cancer-virotherapy

RIGVIR – for now the only preparation containing a live natural virus with oncotropic and oncolytic qualities or the ability to find and destroy malignant cells. It has passed all phases of clinical trials and has been registered in Latvia (reg. Nr. 04-0229), available in Latvia's pharmacies"

I would like to know what the actual trials were and the fatual conlusions drawn by reputable Oncologists.  Would like to have a trial conducted on the RIGVIR thru the FDA. or at leat thru some of the majjor USA Cancer Centers.

 

 

 

 

 

 

 

I'm me, not a statistic. Praying to not be one for years yet.

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nickmac56's picture
Replies 3
Last reply 11/7/2011 - 9:33am

My wife is recovering from her brain shunt surgery. With a bit of luck maybe she can go home tomorrow or Tuesday. Still have some work to do to get her off a catheter (so she needs to be able to walk a bit with support) and IV medication. Half her head is shaved (even though it was pretty short already from previous surgery and radiation) but she doesn't care too much given she is going to lose it in the next couple days from the prior chemo or when the WBR starts. There is some tension between the neurosurgeon and the radiation oncologist about when to start the WBR - it is scheduled for this Tuesday but the neurosurgeon wants to wait a bit longer to let the surgical site heal. She has douple vision which we hope resolves now that her brain is buoyant instead of being pushed down on her optic nerve. She is understandably sad that she cannot have chemo anymore (can't do chemo and WBR at same time and the chemo isn't going to work on her spinal fluid cancer) and hopeful the WBR buys her some time without impinging too much more on her cognitive capabilities. 

I wish there was something else we could do, but we are really at an end to treatment and now it's about palliation. That means it's all about pain control. And balancing pain control with nausea. It's been a challenge here in the hospital - with IV delivery - be interesting to find out how I can manage with oral meds.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Amy Mason's picture
Replies 3
Last reply 11/7/2011 - 8:49am

Hi,

We are looking for young melanoma survivors/patients in their 20s and 30s to share their personal stories at New England based High Schools and Colleges during our Your Skin Is In program aimed at keeping teens out of tanning beds.  If you are interested in volunteering in our Speaker's Group please contact me at amason@mfne.org or 978-371-5613.  We'd love to have your help.  For more information about our Your Skin Is In program visit http://www.mfne.org/public/events/yourskinisin.php.

Thank you,
Amy

Amy Mason
Event Manager
Melanoma Foundation New England
111 Old Road to Nine Acre Corner, Suite 1005
Concord, MA 01742
p 978-371-5613  f 978-371-0109
email amason@melanomafoundationne.org
web www.melanomafoundationne.org

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Lisa13's picture
Replies 8
Last reply 11/7/2011 - 12:11am

Had 2 days of deep depression, but I'm putting that behind me and remaining strong and hopeful.

Even though I finished Yervoy 3 weeks ago and have 2 small brain mets, my lymphocyes as of this week were still high, so I'm really hoping they're going to help keep the micromets away in my brain and everywhere else. I'm a great responder to it, so that has to say something.

I sent an email to my team of Dr's and asked to put WBR on hold and just gamma knife the one that's easy right away.  They either have to figure out how to get the blood away from the other tumour or just get it out somehow. I'm saving WBR until I've got much more than 2. You can either be lucky that it doesn't come back for a while, or unlucky that it keeps coming back. I spoke to someone whose been dealing with 14 brain mets for 2 years!!!  SRS on all of them - there is hope people!!

2 Things - does gamma knife get rid of small tumours right away or does it take time?? For those who had blood in 1 of their tumours, what did you have done to eventually have it removed?

Lisa

 

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

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Anonymous's picture
Anonymous
Replies 6
Last reply 11/6/2011 - 3:08pm
Replies by: Anonymous, JerryfromFauq, Bruce in NH, Lisa13, lhaley

There are so many post within the last few weeks from brave warriors dealing with Brain Mets. Is it me, or does anyone else see that too?

My heart & prayers go out to each and everyone of you.

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heg50heg's picture
Replies 3
Last reply 11/6/2011 - 12:26pm

Today has been 1 year since I have been diagnosed with stage 3 melanoma. My Dr. says the first two years are the most serious times that melanoma can return, or at least that is when you are the most at risk for reoccurance. Any feedback on that would be appreciated as the oncologist I am seeing is not a melanoma specialist but a general practicioner of all cancers. So that is what I am wondering if after the first 2 years does my chances of advancing to stage 4 go down or what.

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ad2424's picture
Replies 6
Last reply 11/6/2011 - 10:47am

Hello everyone

Is anyone on this trial at Yale or Sloan, or does anyone know how it is going?

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My father had 3 wide excisions last 2 months. The pathology reports after each excision continued to show Melanoma in situ cells on the margin despite the surgeon expanded the excision areas from standard 5mm to 1cm margin and removed all visible spots.

My father had surgery to remove a deep 4mm primary on his heel 2 years ago. A few little dark spots covering much wider areas than his primary showed up on his heel again early summer this year. Though all the recent biopsy reports showed Melonoma in Situ (which is much less severe than the primary), it seems very challenging for the surgeon to define the surgery border,

We wonder if we need to continue to expand the excision areas until clean margin. My dad has suffered both physically and mentally a lot last 2 months.

Anyone has similar experience with keep getting postive margins? Do Melanoma in situ cells pop up everywhere before they become visible?

 

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Charlie S's picture
Replies 17
Last reply 11/6/2011 - 5:36am

No, he's not dead   laugh

He has, however had a sour  turn of events after about a good two year plus run on what was then IPI and is now Yervoy.

Spoke with him just a few minutes ago and he is in the hospital after doing a 5k bike race a month ago to needing a cane and more today.

He has a bunch of neurological events that imploded on him, but his team is all over it in Boston and they are trying to get him put back together.

So, if you would, send up a smoke signal, ring a bell or just otherwise send him some good vibes , I know he would appreciate it !

Cheers,

Charlie S

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Replies by: JerryfromFauq, Anonymous

The FDA has OK'd the premarket approval application for MelaFind, a device used to gain additional information on indeterminate pigmented skin lesions to help physicians make decisions regarding biopsy.

Mela Sciences, the manufacturer of MelaFind, submitted a premarket approval application to the FDA in June 2009. Data from a 1,383-participant trial and a companion reader study of 110 dermatologists were included. The device was associated with 98% sensitivity; the rate was similar in the reader study vs. 72% sensitivity for participating dermatologists.

The device received approval in the European Union in September. It is expected to be available in the northeastern United States in 2012.

To start, the device will be placed in select, high-volume integrated dermatology and skin cancer specialists' practices, according to a press release.

MelaFind is not intended for use to confirm a clinical diagnosis of melanoma, but should be used when a dermatologist wants to obtain additional information for a decision to biopsy. In addition, it is intended for clinically atypical cutaneous pigmented lesions with one or more clinical or historical characteristics of melanoma, not those with a clinical diagnosis of melanoma or likely melanoma.

The device should only be used on lesions that are 2 mm to 22 mm in diameter; are accessible by the MelaFind imager; sufficiently pigmented; do not contain a scar or fibrosis consistent with previous trauma; are non-ulcerated or non-bleeding; are more than 1 cm away from the eye; do not contain foreign matter; and are not on special anatomic sites.

Lesions classified as positive according to the device should be considered for biopsy, and the biopsy decision of a negative lesion should be based on the remainder of the entire clinical context, according to the press release. Those classified as "non-evaluable" lesions on MelaFind should be re-evaluated for biopsy.

I'm me, not a statistic. Praying to not be one for years yet.

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Shelby - MRF's picture
Replies 10
Last reply 11/5/2011 - 9:00pm

Hi everyone,

I apologize for the ridiculous amount of SPAM that was/is on the bulletin board.  We are looking into ways to tighten that security to reduce (or prevent) this stuff from appearing.  In the next week or two we'll be running through some different options that will hopefully be of minimal distraction to you.  We have a few options but, as you could probably guess, the most effective ones will likely be the most annoying for the regular users. 

I just wanted to thank you for continuing to let me know when you see these types of posts.  In the future, if it's easier, I just need the username of the SPAMMER and then I can block that user and start deleting posts.  Deleting the posts takes some time because we have to do it one at a time.  We're also looking into fixing that.  Thanks for your patience everyone and as always, be sure to let me know if you need anything.

Shelby - MRF

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Lots' of people both on this website and Melanoma International have given me alot to think about in regards to WBR. The people who have recently done it are so happy because it's helped to make the mets stable. Other people are very much against it because of some potential brain problems 2+ years down the road. Why damage my entire brain for something that some people claim won't help keep the cancer away.

Some people have suggested I gamma knife the one tumour and wait for the other one to stop it's bleed. However, while waiting for that, what's going to come up during that time? What do you do to your brain to keep cells from returning? WBR seems to be able to kill alot.

Why is it that I hear that people who've had a great response to ipi end up getting brain mets and once removed, might not return for quite some time.  My oncologist is starting to wonder if the Yervoy has actually created the bleed in the one met, but has no way of knowing this. Why would I go through WBR if this was actually true???? 

This is one of the biggest decisions of my life. I'm willing to do anything I can to keep this cancer from coming back and I could be as lucky as some people of that happening.   How do people in the U.S. get the tumours gamma knifed when the tumour has blood on it and you can't see it???

I don't know if this is worth going through something that could do wonders, but have potential cognitive, damaging effects down the road. 

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

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Karin L's picture
Replies 2
Last reply 11/5/2011 - 7:06pm
Replies by: Theresa123, j.m.l.

I have absolutely NO medical proof with this...just a gut feeling.  A few times I have seen these two issues questioned (different posts) as possible side affects from Yervoy treatment.  I haven't had Yervoy, but I did do HD IL2 Apr-Jun 2011.  Both are immunotherapy treatments.  I have had both ringing in the ears (tried stopping asprin, no help...MRI of the brain done Wednesday, all clear) and lots of hot flashes since treatment.  The tinnitus started about 2mos. ago...the hot flashes about a month or so after treatment (during treatment it was night sweats which is different).  Are these related to treatment?  I have no idea.  I just thought I would put this out there for someone else who might be searching for answers or possibilities in the future. 

Not only is this disease horrid, the treatments can be horrid with their side affects so any little bit of hope helps calm the nerves sometimes.

Karin

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Lisa13's picture
Replies 22
Last reply 11/5/2011 - 6:52pm

Was told today I have 2 small mets in my brain.  I know this is devastating, but I would prefer people not to make me feel how horrible this is. Yes, it sucks, but there are people on this board who've had or have brain mets and are still here.

Gamma Knife is not in the cards for me considering 1 of them has already bled. They're both in very good spots in the brain not causing any problems right now.  Because I'd have to wait a month for the bleeding to absorb, they suggested WBR and then Gamma Knife. I know people have been very against this treatment, but I was told that most younger people tolerate this treatment quite well and only 1% of people get severe side effects.  The goal is to start WBR next Wednesday for 10 days in a row and then if they're still there, they'll be able to gamma knife them out of there. Apparently there is just above 80% chance of eliminating the tumours and possible mircroscopic cells. I know nothing is guaranteed, but I'll take these odds at the moment. I know many people have had success from gamma knife (SRS) so WBR should also prove successful. IPI and radiation could continue to keep the brain mets from coming back for a while - you just never know.

Yes, I'll lose all my hair, but they have some pretty divine wigs!  I have read on this board that people who've had brain mets are still hear - some years later, some working, etc, etc. There is always hope and I'm not giving up!  I still feel fantastic and I'm happy that I'll still enjoy life going through radiaion.

Anybody done WBR which kept the mets away for a while??  I know lots of you have had gamma knife which has worked, so that's a great thing!!

Lisa

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

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