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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Anonymous's picture
Anonymous
Replies 1
Last reply 2/9/2014 - 4:11pm
Replies by: Janner

I was treated with Temodar for a grade 3 astrocytoma in my brain tumor, a rare but possible side effect of the drug is infertility and development of leukemia. What are the statistics, or how many, if any of you that have been treated have expirienced these side effects? 

Shelbie

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Anonymous's picture
Replies 8
Last reply 2/16/2014 - 5:57pm

Anyone familiar with Mohs where the first layer was down to the fat layer, silver dollar size.  On my face, 25 stituches externally.  I am in shock, scared and need some suggestions or comments from someone who can explain why just one layer, so deep.  Not sure what happens next, other than wiating for pathology.  Mohs surgeon said to call them in one week.  

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Pink's picture
Replies 1
Last reply 2/9/2014 - 12:46pm
Replies by: POW

I see today that Moffitt is going to be one of two hospitals in the US to have a trial using your own T-cells

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djdumaine's picture
Replies 3
Last reply 2/10/2014 - 9:22am
Replies by: Janner, djdumaine

Hi all ~  It's been a very long time since my last post....which is good, since I've been busy living life!  Last night I found that one of my freckles has become raised, and itchy.  Obviously, since I'm a stage 3 survivor and NED for almost 10 years I know that this is nothing to overlook.  My question is this....should this be a recurrence what would a treatment plan look like since I've already had lymph node involvement 10 years ago?  

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starletwoman2007's picture
Replies 5
Last reply 2/9/2014 - 7:57pm

Hi 

Does anyone have any experience of using clinicaltrials.gov. I want to get on a clinical trial and wonder if there is someone i should contact?

 

Thanks

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mwcollins's picture
Replies 8
Last reply 2/9/2014 - 9:01pm

After an apple sized tumor removed and a full foot of small intestine removed, Kevin is home! Not only home, but home and NED! The doctor removed the tumor and there were no others to be found! I am a happy camper right now! Time to recover at home and start the 'watch, wait and scan' phase of life. Words cannot describe how grateful I am to all of you for your thoughts, prayers and words of encouragement.

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MaryD's picture
Replies 3
Last reply 2/11/2014 - 3:57am
Replies by: JerryfromFauq, MaryD, kylez

I apologize if this had already been addressed but I haven't been logging in as much lately.  On the former MPIP platform, we used to be able to post our profiles and I wondered if they transferred over to this forum.  If so, not sure how to retrieve mine as I would like to update it.

Thanks for your feedback,

 

Mary

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SteveDB's picture
Replies 11
Last reply 2/11/2014 - 10:15am

Today is February 9, 2014. 

On February 10, 2004, I had my most recent (what wound up being the last so far) of 6 cancer surgeries. When I woke up  later that afternoon, I found that my arms and hands were numb and tingly. My wife explained to me that while on the surgery table, my iliac artery exploded due to the cancer which had so compromised the arterial wall that it could not take the pressure. 
When the surgeon came in the next morning, he explained to me what had happened. He was finished working on the tumor which had wrapped around the iliac vein, and was ready to tackle the part of the tumor which had wrapped around the iliac artery. When he touched the scalpel to the artery wall, it exploded. He continued on, telling me if not for the quick response from his partner, I would've bled out on the table. He said that I lost 1250 cc's of blood. 
According to Melanoma protocols, the standard procedures for cancer diagnostic scans, and follow up, the first 24 months following an occurrence, or recurrence, the patient is observed closely every 3 months. If the patient reaches the 25-60 month mark, they are observed once every 6 months. Once they hit the five year mark, they are observed annually out to the 10th year. 

If they reach the ten year mark, two things occur.
1- if there is no recurrence, aka "NED (no evidence of disease)", they are considered cured. 
2- the time between appointments for ongoing is decreased to once every 5 years. 

As of this point, I am cancer free. 
I am acutely aware of the precarious and uncertain nature of this disease. 
I cannot tell you how many friends and family members, and acquaintances have lived for only days, to months, to even a few years with their cancer, gone into remission, and had their cancer return with a vengeance, killing them swiftly. 

All that aside..... according to Medical science, I am now considered "cured", and will now only see my oncologist every 5 years, probably get PET scans, or at least blood tests. 

I am presently about as ecstatic as I can be, because while my life is still in a precarious state-- the intensity is feeling lifted. I suppose the title of the movie-- Waiting to Exhale-- applies here as an expression of how I've felt. I.e., I can exhale now. 
 

I'm posting this as an update. I was here last on September 13-14, 2013. I was excited then, and even more so today. 
I hope that all of you hold on to the Hope that God, in Jesus, gives. 
I saw an article yesterday, from Noetic.org. It was on unexpected remissions, and published back in 2011. 
I don't want to give false hope, because I believe the only real, lasting hope is found in Jesus Christ. I.e., even if we do die, we immediately enter God's Kingdom, and are in paradise for an eternity (2 Cor. 5:3-8). I do however want to say-- there is Hope. 
So....
Hi. I am still alive. 10 years since last reccurence, 26-1/2 years since onset, 16-3/4 years since diagnosis. 
One heartbeat at a time.

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kpcollins31's picture
Replies 5
Last reply 2/11/2014 - 9:57am

I wanted to say thanks for all the thoughts and prayers over the past week while I was going through my bowel resection. As my wife noted in another post, I came home from the hospital yesterday (2/9/2014)! It was really nice to sleep in my own bed... and also really nice not to have the daily 3am visit from the hospital lab vampires to draw more blood :). I feel really good too and am actually working from home today. I am going to put together another post later today to talk about the surgery itself just to shed light and take away fear for anyone else that mighht have to walk down that road in the future. 

Thanks again for all the support!

Kevin

 

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eric w's picture
Replies 11
Last reply 2/12/2014 - 12:12pm

Hi all,

My wife had SRS done on a single met a week before xmas. The same day we reintroduced ipi. The last couple weeks she has what she has called pressure behind her eyes and just a funny feeling. She is certain she has another met. She is scheduled for her post ipi scans and mri in early march and does not want to get it done earlier. Curious if anyone else has had this feeling after SRS? Thanks

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Michelem's picture
Replies 6
Last reply 2/11/2014 - 4:23pm
Replies by: Michelem, Maureen038

Today we learned that the melanoma has spread to Don's liver and bones - this just since his last PET scan in December.

he is also getting his first ipi infusion today. Doc says it can be 25% effective! even against such an aggressive spread.

plans for radiation have been cancelled. PD-1 trial is closed.  Our specialist has mentioned biochemotherapy, but is concerned because of Don's age - 72.

i feel we are getting good attention and care - but that there simply is no clear solution. Has anyone with liver and bone mets had good results with ipi? I am looking for a dose of hope.  mm

MicheleM

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starletwoman2007's picture
Replies 9
Last reply 2/11/2014 - 9:06am

I have been to hospital this afternoon and have been told that i cannot have gamma knife radiation cos the brain mets i have are smaill in mass. Am i right in thinking this is better than having large ones or am i just in denial? 

thanks 

 

Sal

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starletwoman2007's picture
Replies 2
Last reply 4/4/2014 - 4:40pm

Can anyone tell me whether they have been taking pd1 drugs and how successful they have been?

Thanks 

 

Sally

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New Approach Quickly IDs Drug Candidates from Genome Sequence

Mon, 02/10/2014 - 2:45pm
Get today's drug discovery & development headlines and news - Sign up now!
The new method identified a highly potent compound that causes cancer cells to attack themselves and die. (Source: The Scripps Research Institute/Disney lab) The new method identified a highly potent compound that causes cancer cells to attack themselves and die. (Source: The Scripps Research Institute/Disney lab) In research that could ultimately lead to many new medicines, scientists from the Florida campus of The Scripps Research Institute (TSRI) have developed a potentially general approach to design drugs from genome sequence. As a proof of principle, they identified a highly potent compound that causes cancer cells to attack themselves and die.
 
“This is the first time therapeutic small molecules have been rationally designed from only an RNA sequence—something many doubted could be done,” said Matthew Disney, an associate professor at TSRI who led the study. “In this case, we have shown that that approach allows for specific and unprecedented targeting of an RNA that causes cancer.”
 
The technique, described in the journal Nature Chemical Biology online ahead of print, was dubbed Inforna.
http://www.dddmag.com/news/2014/02/new-approach-quickly-ids-drug-candida...

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

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JerryfromFauq's picture
Replies 3
Last reply 2/12/2014 - 12:14am
Replies by: JerryfromFauq, Anonymous, Yvonne.D

wow, There is NO "CANCER"!   What a statement to hear in a group of doctors!  Actually they say what I've been pushing for years  .................Define CANCER.................................. ...http://www.youtube.com/watch?v=RU1vyBGzbzA

Worth listening to!

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

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