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.
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Last reply 2/9/2014 - 4:11pm
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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- Re: Temodar - (2/9/2014 - 4:11pm) Reply
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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- Re: Mohs surgery - diagnosed Melanoma in situ, early lesion - (2/9/2014 - 1:42pm) Reply
- Re: Mohs surgery - diagnosed Melanoma in situ, early lesion - (2/9/2014 - 1:54pm) Reply
- Re: Mohs surgery - diagnosed Melanoma in situ, early lesion - (2/9/2014 - 4:02pm) Reply
- Re: Mohs surgery - diagnosed Melanoma in situ, early lesion - (2/9/2014 - 4:47pm) Reply
- Re: Mohs surgery - diagnosed Melanoma in situ, early lesion - (2/9/2014 - 5:03pm) Reply
- Re: Mohs surgery - diagnosed Melanoma in situ, early lesion - (2/9/2014 - 8:24pm) Reply
- Re: Mohs surgery - diagnosed Melanoma in situ, early lesion - (2/10/2014 - 11:10am) Reply
- Re: Mohs surgery - diagnosed Melanoma in situ, early lesion - (2/16/2014 - 5:57pm) Reply
Last reply 2/9/2014 - 12:46pm
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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- Re: Moffitt trial - (2/9/2014 - 12:46pm) Reply
Last reply 2/10/2014 - 9:22am
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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- Re: Recurrence Question - (2/9/2014 - 3:54pm) Reply
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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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- Re: clinical trials - (2/9/2014 - 4:19pm) Reply
- Re: clinical trials - (2/9/2014 - 4:26pm) Reply
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- Re: clinical trials - (2/9/2014 - 7:07pm) Reply
- Re: clinical trials - (2/9/2014 - 7:57pm) Reply
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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Last reply 2/11/2014 - 3:57am
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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- Re: MPIP Patient Profiles - (2/9/2014 - 7:37pm) Reply
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Last reply 5/19/2014 - 12:20am
Today is February 9, 2014.
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.
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- Re: Tomorrow is 10 years!!!!! - (2/10/2014 - 8:23am) Reply
- Re: Tomorrow is 10 years!!!!! - (2/10/2014 - 8:39am) Reply
- Re: Tomorrow is 10 years!!!!! - (2/10/2014 - 9:02am) Reply
- Re: Tomorrow is 10 years!!!!! - (2/10/2014 - 9:21am) Reply
- Re: Tomorrow is 10 years!!!!! - (2/10/2014 - 9:29am) Reply
- Re: Tomorrow is 10 years!!!!! - (2/10/2014 - 9:56am) Reply
- Re: Tomorrow is 10 years!!!!! - (2/10/2014 - 10:20am) Reply
- Re: Tomorrow is 10 years!!!!! - (2/10/2014 - 8:31pm) Reply
- Re: Tomorrow is 10 years!!!!! - (2/10/2014 - 9:05pm) Reply
- Re: Tomorrow is 10 years!!!!! - (2/11/2014 - 10:15am) Reply
- Re: Tomorrow is 10 years!!!!! - (2/11/2014 - 10:15am) Reply
- Re: Tomorrow is 10 years!!!!! - (5/19/2014 - 12:20am) Reply
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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- Re: Thanks for the Warm Wishes and Support - (2/10/2014 - 12:09pm) Reply
- Re: Thanks for the Warm Wishes and Support - (2/10/2014 - 2:46pm) Reply
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- Re: Thanks for the Warm Wishes and Support - (2/11/2014 - 12:01am) Reply
- Re: Thanks for the Warm Wishes and Support - (2/11/2014 - 9:57am) Reply
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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- Re: Pressure Behind Eyes - Post SRS - (2/10/2014 - 6:30pm) Reply
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- Re: Pressure Behind Eyes - Post SRS - (2/11/2014 - 7:59am) Reply
- Re: Pressure Behind Eyes - Post SRS - (2/11/2014 - 8:16am) Reply
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- Re: Pressure Behind Eyes - Post SRS - (2/12/2014 - 12:12pm) Reply
Last reply 2/11/2014 - 4:23pm
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
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- Re: Scary PET Results - (2/11/2014 - 9:23am) Reply
- Re: Scary PET Results - (2/11/2014 - 9:26am) Reply
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- Re: Scary PET Results - (2/11/2014 - 4:23pm) Reply
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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- Re: brain mets - (2/10/2014 - 2:52pm) Reply
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Last reply 4/4/2014 - 4:40pm
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...
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Last reply 2/12/2014 - 12:14am
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!
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- Re: Is there really "CANCER" ??? - (2/11/2014 - 10:20am) Reply
- Re: Is there really "CANCER" ??? - (2/11/2014 - 3:54pm) Reply
- Re: Is there really "CANCER" ??? - (2/12/2014 - 12:14am) Reply