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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Lisa13's picture
Replies 5
Last reply 1/5/2012 - 8:57am

My first brain MRI is next week 2 months after I had 2 brain mets gamma knifed. One was 2.5cm and the other 7mm. I haven't had one symptom since - no headache, etc, so this has to be a good sign shouldn't it? Doesn't it seem strange that i feel normal after all this?? Obviously if they were growing, I'd be having some headaches, etc wouldn't I? Being an ipi responder and all mets shrinking or disappearing in my lungs and going nowhere else must be a good sign. I know several people who got brain mets after ipi (like me) and haven't got anymore. This is what I'm truly hoping for, but of course I'm getting extremely nervous.

When they don't check you earlier for possible mets, it's kind of scary. You do understand that swelling, etc takes place after gamma knife so it would be hard to see anything. When do most of you get a brain MRI for follow up after you've had brain mets?

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

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Anonymous's picture
Anonymous
Replies 8
Last reply 1/3/2012 - 11:32pm
Replies by: glewis923, jag, Lisa13, Anonymous, lhaley

Hi, 

 

Having quite a bit of scan-xiety today. Had my last brain MRI/CT around a month ago, next one is early next week. I have been having a very dull, though noticable constant headaches for the last few days. Does any one have any insight into exactly how quickly brain mets could double in volume?

Thanks!

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lhaley's picture
Replies 8
Last reply 1/5/2012 - 8:45pm

This morning onto Charlotte I started to see double vision. Petrified.  Today was just to be the PET/CT.  There was an accident on the Interstate and we were running late. My husband had to just drop me off to go park and I went to walk and I could not support myself. The guard got me quickly into a wheelchair. 

I called my oncologist and told him what was going on, he immediately had another mri.  Both PET and MRI was good!    The problem is edema.   I had almost weaned and during the last 3 weeks the edema had caused more issues with out having the steroids.....ugh

I have an appointment with both the radiologist and nuerosurgeon and will make the decision.   Both my husband and my oncologist feel that they were glad of the scan results, I am glad but am already anxious for the next step.

By night the double vision was already gone, eyes are still a little bit of blury.  The tumor was originally discovered the night before my last PET and now this time it was discovered that morning.  Overall I guess I'm pretty lucky and they fit me in the same day.

Linda

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Sharon's picture
Replies 11
Last reply 1/5/2012 - 6:10pm

My husband Gail is 67 and had his first treatment of Yervoy today.  He had a biospy on a lymph node in September that proved melanoma.  Nothing has been found on his skin to point to orginial so they can't stage him.  He had surgery the end of September that removed 9 limp nodes 6 were cancer one unoperable near his heart.  We are born again believers and have faith in God and ask for continued prayers we pray for little or no side effects and if God wills complete healing.  A pet scan will be on Friday since September was his last one we hope this scan will show no progression.  We thank everyone who has posted as you have helped in giving us valuable imformation. I post this in a thank you for those who have posted and perhaps my post may help someone else.  May God bless each and everyone as we are all on an adventure together. 

God, Family, Friends and Dogs ~ it's all that really matters!

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Jim M.'s picture
Replies 1
Last reply 1/5/2012 - 8:12pm
Replies by: Gene_S

Hi Gene,

 I've either been away or our daughter who was visiting made her home at the computer!

  To hopefully make more clear what I wrote, "My immune response was at least 5 times over baseline", here goes. Before I began treatment with Yervoy I underwent leukapheresis where a portion of my white blood cells were harvested with the aid of a cell separator machine. My oncologist (more appropriately immunologist) then studied the white blood cells conducting immune assays. He determined my baseline level of T cells.

  Approximately 3 months into treatment I had a second leukapheresis to harvest more white blood cells and determine if there was an immune response. My immunologist reported I had a big response and said the level of T cells had proliferated in great numbers. That's when he said I had an immune response of at least 5 times over baseline. I had a 3rd leukapheresis done toward the end of my treatment and it showed the same response. Hope this helps.

God's richest blessings this new year,

 Jim M.

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Entering my name, does not change the response so I am trying the same post, just deleting the URL.

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

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/3/2012 - 11:07pm
Replies by: JerryfromFauq, Anonymous, W.

Shelby, it appears to me that last nights change to the BB program has eliminated our ability to list URL's of good information in our posts.  This is not an accceptable resolution to the fake spam posts trying to sell items thru  our BB.

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

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Changes to the BB prevented me from including the URL in this post.
Interesting article.  Human trials may have already started.
The web page also has many related articles summarized on the side panel.

Blood Stem Cells Engineered to Fight Melanoma

ScienceDaily (Nov. 28, 2011) — Researchers from UCLA's cancer and stem cell centers have demonstrated for the first time that blood stem cells can be engineered to create cancer-killing T-cells that seek out and attack a human melanoma. The researchers believe the approach could be useful in about 40 percent of Caucasians with this malignancy. 

Done in mouse models, the study serves as the first proof-of-principle that blood stem cells, which make every type of cell found in the blood, can be genetically altered in a living organism to create an army of melanoma-fighting T-cells, said Jerome Zack, the study's senior author and a scientist with UCLA's Jonsson Comprehensive Cancer Center and the Eli and Edythe Broad Center of Regenerative Medicine and Stem Cell Research at UCLA.

"We knew from previous studies that we could generate engineered T-cells. But would they work to fight cancer in a relevant model of human disease, such as melanoma?" asked Zack, a professor of medicine and microbiology, immunology and molecular genetics in the UCLA Life Sciences Division. "We found with this study that they do work in a human model to fight cancer, and it's a pretty exciting finding."

The study appeared Nov. 28 in the early online edition of the peer-reviewed journal Proceedings of the National Academy of Sciences.

Researchers used a T-cell receptor -- cloned by other scientists from a cancer patient -- that seeks out an antigen expressed by a certain type of melanoma. They then genetically engineered the human blood stem-cells by importing genes for the T-cell receptor into the stem cell nucleus using a viral vehicle. The genes integrate with the cell DNA and are permanently incorporated into the blood stem cells, theoretically enabling them to produce melanoma-fighting cells indefinitely and when needed, said Dimitrios N. Vatakis, the study's first author and an assistant researcher in Zack's lab.

"The nice thing about this approach is a few engineered stem cells can turn into an army of T-cells that will respond to the presence of this melanoma antigen," Vatakis said. "These cells can exist in the periphery of the blood, and if they detect the melanoma antigen, they can replicate to fight the cancer."

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

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pbnjelley's picture
Replies 1
Last reply 1/6/2012 - 10:18pm
Replies by: FormerCaregiver

Hi!  This is the first time I've ever posted anything really, but really would like to see if anyone else is in a similar boat.   I'm 26 years old and was diagnosed this summer from a mole on my upper back and then during surgery they also took out 16 lymphy nodes under my arm, 3 of those having melanoma.  So I was a stage 3.  Through the various scans (some even done twice) my oncologist was able to tell me that I am at this point cancer free!  So I am signed up for the IPI trial to hopefully prevent any reoccurance.  I had my first transfusion the beginning of November and felt fine for a couple weeks with little to no side effects.  And then my body crashed a couple days before my period.   I became extremely sick (nausea, vomiting, etc) and therefore dehydrated.  I was exhausted and all my muscles ached.  I had hot flashes and night sweats and chills that nearly made life stand still as I cuddled with my heating pad, rice bag and cups of hot tea complete with down-comforter.  And then a day or two after my period, all the symptoms slowly backed off.  My oncologist (who suspected something wrong with either my adrenal gland or thyroid) made an appt with an endocrinologist who determined that my estrogen levels were alarmingly low and my body thought it was going through menopause.  Has anyone else had their hormone levels change since on IPI?  My body just did the same ordeal all over again last week (again, within the time frame of a couple days before, all through, and a couple days after my period).  So far the fix is to try being on a birth control pill to help stabalize my hormones but I am not too keen on this quick fix because I also have Factor V Liden and have to be super aware of blood clots.  I just am wondering if anyone else has experienced anything like this.  Other things that have happened since I started treatment,  i developed a pilonidal cyst (cyst on my tailbone that progressed very quickly) and pnemonia in my right lung.  I doubt these have anything to do with treatment, but will throw them out there just in case anyone else has had problems.  I'm the only person being treated with this clinical trial in the area that I live (2nd one ever to be treated) and am finding it hard to find ANYONE in the area who has any kind of melanoma knowledge whatsoever.  I find myself in the dark a lot.

Today is my day!

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Erica A's picture
Replies 9
Last reply 1/9/2012 - 5:41pm

Just checking in with the community to provide hope in the New Year.  My husband Ken continues to be cancer free, will be 7 years NED from Stage IV this June!  Ken has been enjoying a normal cancerfree life with only a yearly chest xray and bloodwork as a reminder of his status.  You can have a lasting remission from stage IV melanoma - there is always hope! 

All of Ken's info is in our profile, but as always feel free to email us with any questions or for support.

Wishing everyone a wonderful and hope-filled 2012! 

Erica & Ken heart

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Lisa13's picture
Replies 6
Last reply 1/3/2012 - 10:12pm

During the past couple of weeks, I experienced itchy scalp for 2 days and a rash on my chest that also disappered. These were both side effects I had after each ipi infusion which I finished in October.  In this past week, I've had this discomfort on the right and left side of likely my bowels/intestines, light pink mucas once during a bowel movement and probably a bit of blood this morning.  Keep in mind, I have a great appetite and don't feel sick. My clinical nurse talked to my oncologist who wants me to go on Immodium and  Entocort probably cause he thinks I've got a colitis issue coming on from ipi.  I had great scans on November 30th and get my next scan January 25th, but my Dr. doesn't seem concerned about these problems I'm having.  How can a dr. assume bowel problems needing perscriptions and not cancer?  I trust my oncologist 100%, but maybe its normal for us to be more scared and Dr's to think something differently.

Who has experienced symptoms months after ipi??? Why do these problems happen??

Lisa

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

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/3/2012 - 5:38pm
Replies by: JerryfromFauq, Janner

My family and I consider the Dermatologist part of the family. We actually gave him a Christmas present this year. All of us have been diagnosed with Melanoma at least once, but my brother has had several 5+ primaries. To answer your question, yes, our situation is genetic. We all have been diagnosed with FAMMM. Several of us are also getting scanned for pancreatic cancer too. Who knew the pancreas wanted part of the fun?

I have been very good about my skin checks for the past five year, but my dermatologist has found my three melanoma's. Each one was thin and was found after using the dermascope.

Although my derm has saved my life more times than I can count, I was not really satisfied with a few questions I have. My brother is on this sight and he suggested asking the group. (I am using his account) So here it is.

 

1. Will all the atypical moles I have not (300+) ever stabilize, meaning, will there ever be a point where I no longer have to worry about my current moles, just look for new moles.

2. Ever since my first mel, I stay out of the sun, lather in sun screen if I do get in the sun, and cringe when I see a tanning bed. Will I be able to prevent new moles from showing up if I keep these habits afloat? Or will I still get new moles even after taking special precautions.

3. At what point do you get an itchy mole removed. When I have an itch, I most likely itch a mole since I have so many, there are several that I itch more than others (not more than once a day), but all have been looked at by the derm and determined to be fine. I know these moles have not changed a bit, but I still worry because my derm always says at the beginning of the appt, "do any moles bleed or itch?" I always show him the same moles and he says they're fine. Should I be more worried? Thanks for all your help.

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KRob's picture
Replies 2
Last reply 1/10/2012 - 10:40am
Replies by: fdess056, CLPrice31

Friends of MPIP:

I have been speaking to groups and organizations on sun safety and the need for research support for MRF for the past 3 years. I speak to many age groups, but most of my upcoming talks include mainly teens at local area high schools. Usually I organize my talks with high schoolers starting with a brief bio of my own experience as a mel survivor then quiz my audience on their knowledge of melanoma followed by a video presentation of a young victim of melanoma, Mollie Biggane. My talks usually end with skin and sun safety tips followed by a question/answer period.

While this format works for the most part, I have found that my teen audiences, especially, are most curious about people closer to their own age who have melanoma (I do share a couple of stories of young people from our area). Obviously, the shock of the realization that it is the 15-25 year old age group who is most seeing an increase in mel cases catches their attention.

What I would like to add to my talks are more personal, current bios. of  MELANOMA  fighters who are willing to share their stories along with a few pictures. For example, I share pics of my many scars and photos that were taken of me during treatments such as gamma knife. I also have post-craniotomy pics that include my almost unrecognizable steroid self, which always shocks them. But I am going on 48 so my story still may not have the impact I wish to have.

These are the sort of stories and pics I'm looking for if any of you are willing to share them.  It's a great way to get the word out about melanoma, and I would be privileged and grateful to be able to share your stories with young people in the hope that it might help them to lower their risk and increase their knowledge of how melanoma may affect their lives.

I know that people are hesitant to share their real names or pics, so if it's anonymity you wish I can just use your first name and get a basic photo release that your pics will not be used for anything other than these presentations. Please contact me at my email: jellybean6483@yahoo.com with questions or stories to share.

Any other suggestions about how I may better go about this process would also be appreciated.

Thanks so much!

Karen

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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Friends of MPIP:

I have been speaking to groups and organizations on sun safety and the need for research support for MRF for the past 3 years. I speak to many age groups, but most of my upcoming talks include mainly teens at local area high schools. Usually I organize my talks with high schoolers starting with a brief bio of my own experience as a mel survivor then quiz my audience on their knowledge of melanoma followed by a video presentation of a young victim of melanoma, Mollie Biggane. My talks usually end with skin and sun safety tips followed by a question/answer period.

While this format works for the most part, I have found that my teen audiences, especially, are most curious about people closer to their own age who have melanoma (I do share a couple of stories of young people from our area). Obviously, the shock of the realization that it is the 15-25 year old age group who is most seeing an increase in mel cases catches their attention.

What I would like to add to my talks are more personal, current bios. of  MELANOMA  fighters who are willing to share their stories along with a few pictures. For example, I share pics of my many scars and photos that were taken of me during treatments such as gamma knife. I also have post-craniotomy pics that include my almost unrecognizable steroid self, which always shocks them. But I am going on 48 so my story still may not have the impact I wish to have.

These are the sort of stories and pics I'm looking for if any of you are willing to share them.  It's a great way to get the word out about melanoma, and I would be privileged and grateful to be able to share your stories with young people in the hope that it might help them to lower their risk and increase their knowledge of how melanoma may affect their lives.

I know that people are hesitant to share their real names or pics, so if it's anonymity you wish I can just use your first name and get a basic photo release that your pics will not be used for anything other than these presentations. Please contact me at my email: jellybean6483@yahoo.com with questions or stories to share.

Any other suggestions about how I may better go about this process would also be appreciated.

Thanks so much!

Karen

 

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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A WEB search of Jeff Patterson and Melanoma found many interesting articles.

http://mpip.org/articles/alt.html

Author: Jeff Patterson Date: January 8, 1996 -->

***************************************************************************
* CITATIONS AND ABSTRACTS *
* *
* FROM THE NCI'S CANCERLIT DATABASE *
* *
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21
UI - 95183366
AU - Prasad KN; Hernandez C; Edwards-Prasad J; Nelson J; Borus T; Robinson WA
TI - Modification of the effect of tamoxifen, cis-platin, DTIC, and interferon
-
-alpha 2b on human melanoma cells in culture by a mixture of vitamins.
SO - Nutr Cancer 1994;22(3):233-45
AD - Department of Radiology, University of Colorado Health Sciences Center,
Denver 80262.
AB - The effect of a mixture of vitamins in modifying the efficacy of
commonly used drugs in the treatment of human melanoma has not been
studied. Vitamin C and d-alpha-tocopheryl succinate (alpha-TS) alone
reduced the growth of human melanoma (SK-30) cells in culture,
whereas beta-carotene (BC), 13-cis-retinoic acid (RA), or sodium
selenite alone was ineffective. RA caused morphological changes, as
evidenced by flattening of cells and formation of short cytoplasmic
processes. A mixture of four vitamins (vitamin C, BC, alpha-TS, and
RA) was more effective in reducing growth of human melanoma cells
than a mixture of three vitamins. The growth-inhibitory effect of
cis-platin, decarbazine, tamoxifen, and recombinant interferon-alpha
2b was enhanced by vitamin C alone, a mixture of three vitamins (BC,
alpha-TS, and RA), and a mixture of four vitamins (vitamin C, BC,
alpha-TS, and RA) that contained 50 micrograms/ml of vitamin C. These
data show that a mixture of three or four vitamins can enhance the
growth-inhibitory effect of currently used chemotherapeutic agents on
human melanoma cells.

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

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