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.

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

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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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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lizzykittycat's picture
Replies 12
Last reply 1/3/2012 - 3:09am

Hello board,

I will be having my second surgery this week. I had my first in oct w a wide area excision and sentinel node dissection. Since then, I have had pretty bad swelling and have been seein a lymphedema therapist three times a week.

My question is, if you had this surgery in the groin, can you please tell me how difficult the recovery was? My surgeon says about 30 days. Is it super painful? Do you really need to be in bed all day? I have a 15 month old and am so scared how limited I will be. How bad was swellimg afterwards? Any experiences and advice would be greatly appreciated.

Thanks in advance. I wish everyone a 2012 of health, happiness and prosperity.

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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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JerryfromFauq's picture
Replies 2
Last reply 1/3/2012 - 1:13am

http://flipbook.insidemoffitt.com/melanomaPresentations/saturday/79%20We...

 

Anti-PD-1 antibody for previously
treated, stage IV melanoma
• PD-1 expression on CD4 and CD8 T cells is
decreased after anti- PD-1 treatment
• CTLA-4 expression on CD4/8 T cells also rose
after anti- PD-1 treatment
• These data would suggest that anti-PD-1 priming
followed by anti-CTLA-4 boosting might be useful
• In the ongoing trial of second line PD-1 antibody,
four patients have had subsequent anti-CTLA-4
• Two of the four have had major responses after
failing anti-PD-1; one CT image is shown (next)

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

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fdess056's picture
Replies 5
Last reply 1/2/2012 - 8:56pm

Hi, all.  It seems Mel has decided to be especially "generous" to me for the holidays this year.  For Hanukah my 1st lung met.  For Christmas my very 1st brain met.  For the new year I'm giving Mel IPI,  the gift I hope keeps on giving.  My 1st treatment was yesterday (Thurs 12/29.)  Feeling well.

Happy New Year to all

FrankD

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boot2aboot's picture
Replies 6
Last reply 1/2/2012 - 8:14pm

Hi to All taking Zelboraf and those who research MM, especially Michael, Charlie, Gene, Dick K and Jimmy B.,

I am currently ending my 4th month of Zelboraf treatment.   I saw the onc and had my second set of scans.  The GOOD news is that my tumors have shrunk 40% and my bloodwork looks good...I have one tumor in my liver measuring .6X.9cm (was.8X1.3 in OCT).  I have one tumor in my spleen which was 1X1cm(was1X1.5 OCT) i have 4 lung mets? nodules the largest being 3m (no change from OCT)... So i would say i had a 40% reduction in my liver and spleen mets...not bad considering i am on a GREATLY reduced dose of Zel due to severe side effects....i was advised to start searching clinical trials because Zelboraf usually quits working after 6 mos...I will head down to Moffitt and consult with Bowtie Guy...

Here are my questions

1. is surgery for liver and spleen met a smart way to go? ( the only reason i ask is i have one tumor in each organ and they are small)...but i have no idea what the recovery time will be...and that would be important because i could have no treatment during this time...the lung mets are too small to biopsy and they might not even be mel...but, of course, i will claim they are...because they might be...for stage 4  trials...

2. If i do surgery can i still get into anti-PD1 trial? or will that boot me out?

3. If i do surgery should i consider IL-2 instead of PD1?-the only reason i ask this is because IL-2, although it works in 5% of peeps seems to create NED in those it does work...

4, is any science guy out there currently on to finding a way to target other pathways like CTL4, ect?  Just HOW many pathways is there anyway? other than Braf Mek pathway, PD-1, CTL4?????

4.instead of anti-PD1 should i consider MEK trial (since i am Braf +)

Happy Melanoma Free and New EFFECTIVE TREATMENT 2012 everyone...We lost a lot of Great People this year and i don't want to lose anyone else , including me to MM.

Boots

don't back up, don't back down

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/2/2012 - 5:37pm
Replies by: snowmaneasy, kylez, Maria Elena, scots, Anonymous

hi happy xmas. i was diagnosed jan this year with stage two melanoma, one eighteenth of millimetre and had two centimetres extra cut out around where the melanoma was from my back.. Can someone tell me what i do now. my father died from stage four melanoma last year bone cancer, and it is thankyou to him that i found this on me... when i went to get my moles checked. do i go back now every five months and get blood tests? lymph tests? what tests SHOULD i get so it doesnt come back? can someone advise me PLEASE..... it is scarey. thankyou so much. :)

today is a gift and thats why its called the present

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heg50heg's picture
Replies 1
Last reply 1/2/2012 - 5:35pm
Replies by: Erinmay22

Happy new year to everyone on this board and I hope to see or hear everyone posting in this new year.May everone keep fighting and pulling to defeat melanoma for another year. I know i am certainly going to. had clear scans at the end of december and am looking forword to being desease free untill my next appointment in march and I wish everyone here success as well. Thanks to all who have answered my questions this year when I was going through treatments.

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jimjoeb's picture
Replies 2
Last reply 1/2/2012 - 2:18pm
Replies by: jimjoeb, Janner

Heard some disappointing but not drastic news today. For those who don't know my story, I was diagnosed as Stage IIIa following surgery in June 2011. I declined interferon treatment and have been followed closely since then by my oncologist, dermatologist and family doctor plus my own skin checks.

Just before Christmas, my dermatologist did two skin biopsies. I learned today that the one on my foot has atypical cells and that she is referring me to a plastic surgeon for further surgery to get a wider margin (5mm). I understand that it isn't melanoma but sometimes could evolve to melanoma so that further surgery is a precaution.

Have I understood this properly? Does the 5mm mean depth as well as width? I ask because the mole was between my toes and I'm concerned as to what that might mean.

Be Not Afraid-God is with you always Stage IIIa

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Lauri England's picture
Replies 2
Last reply 1/1/2012 - 1:35pm
Replies by: MariaH, SuzannefromCA

In the middle of October 2011 sometime I got this small lump under my skin between my colar bone and neck area.  For a long time I thought it was a pimple that I could not get.  That is why I did not say anything to my Onc.  Now it is the last day of December 2011 and the lump is still there and a little bigger.  It is the same color as my skin and is somewhat numb when I try to pinch it.  It is a hard lump that I can grab onto.  It is a little smaller then a pencil eraser.  I am going to call my derm and schedule an appointment to have it looked at and see what he says but I wanted to see if anyone else experienced anything like this.  It is on the same side as my original melanoma.  On the right side. The original melanoma spoke was only about 3 inches away.  Kind of nervous.

Don't sweat the small stuff. There are bigger fish to fry!

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NYKaren's picture
Replies 5
Last reply 1/1/2012 - 12:33pm
Replies by: NYKaren, JerryfromFauq, Anonymous, hope4cure1

Hi everyone.

I literally just walked back into my office after having two punch biopsy stitches removed at derm's office.  The nurse removed the stiches (the doc is out) so I asked her for the biopsy results--both showed "melanoma in dermis."  There was no other description, they were just small spots....satellites that keep popping up all on the side of my face near where the original larger site is.

Tonight I have PET and MRI of the brain scans, so I know we'll know a lot more after that.  But I was just so discouraged.  I just finished my second course of IL-2.  There was some talk of doing a 3rd round to "hold me off" until I can get into an anti-PD1 trial.  The docs had thought I'd be able to get into the Curetech one that just started, but Curetech didn't include Stage III unresectible.  Damn. 

So my question is this--if I have a significant spread of cutatenous satellites after completing the second course of IL-2, WHY would I want to subject myself to a third?  After my first course, some small spots on my lymph nodes cleared up, but that may have very well been a late response to Ipi.  Does this make sense to anyone?

I know I'll know more when I see Dr. Wolchok after tonight's scans, but I'm just so down.  I think that deep down inside I thought they'd come back benign...even though Dr. Halpern actually said that he thought they were melanoma because they were raised.  Lesions that are flattened after these treatments can just be leftover pigment, but raised is bad.

Anyway, thanks for letting me vent; all advice welcome, unless you're going to tell me to stop whining, cuz I already know that I need to. (I felt like I was hit in the stomach after reading about TracyLee last night--I think we all did.)  At least I'm still here fighting the good fight.

to borrow from Charlie,

Cheers,

karen

Don't Stop Believing

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TracyP's picture
Replies 4
Last reply 1/1/2012 - 11:15am
Replies by: Janner, TracyP

Hi all and Happy New Year!

 

I am most grateful for this resource and appreciate you sharing your experiences.

I know I am lucky, my melanomas were all caught early.  Still does not make it any less terrifying or panic me about the future.

To start I was diagnosed with my first melanoma 10 years ago...it was on the underside of my forearm, a simple freckle that itched.  I was pregnant at the time so I asked my ob who said to have it looked at by a derm.  Since I did not have one at the time I went to a friend of mines father who diagnosed it as in situ and excised it.  He really made no to do about it...no follow up was scheduled. (He was a much older doctor and before google was a verb)

I just recently had surgery on December 16th to remove a .75mm, clark's level III from my left breast, also a melanoma in situ as well on my left breast, a SNLB under my arm and four additional biopsies on my right breast.  I recently got the results and my margins are clear, SNLB negative and biopsies clear with exception of one being atypical.

A few question and sorry they are all over the place:

Is it odd that I had two melanomas so close together (geographically and time) and on a non sun exposed area?

I am horribly paranoid that the beast will return, how do you cope with that being in the back of your head all the time?

What else should I be doing proactively for my care.....I have met with a surgeon obviously...but couldn't originally get in with a derm in an appropriate amount of time so had a general doctor biopsy it for me and sent me to a surgeon.  Do I need to meet with an oncologist?  I do have an appointment with a new Dermatologist next week that was recommend to me from a woman I met locally that had melanoma.

Also my surgeon recommended genetic counseling.  I do not have contact with my father or know much about that side of the family except my grandmother died of cancer, but do not know what type.  Is there a benefit to genetic counseling/testing for melanoma?  My dr mentioned that a small percentage of melanoma is familial and that type can has a high incidence pancreatic cancer.  Thus would be beneficial to know so I could have yearly testing to monitor signs of that.

Thank you for any info or feedback :)

TracyP

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