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

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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AlanM's picture
Replies 2
Last reply 1/5/2012 - 8:24pm
Replies by: CLPrice31, lhaley

I took two doses of Yervoy this fall (August - September) but had to stop due to a bad case of colitis. I was on steroids from mid September through mid-December. The past week I have felt slightly dizzy and I am wondering if this is a side effect of the yervoy. I did not feel it while on the steroids. I did have a brain met treated with gamma knife this past May, but scans in November showed that to be shrinking and no progression (whew!).  So just wondering if anyone here has felt the same either coming off the steriods or from Yervoy in general Thanks.

Alan

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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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Kathleen880's picture
Replies 6
Last reply 6/8/2012 - 2:53am
Replies by: tracygonnella, Mishka77, Bosandi, washoegal, Anonymous

Just wondering if anyone is getting treatment with Sylatron injections?  I'm going on my 6th treatment.  I will be doing this for one year. 

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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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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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panda's picture
Replies 5
Last reply 1/4/2012 - 10:28am
Replies by: Janner, panda, lhaley

Hi there, could someone pls explain to me the difference  between Clarks level and Breslow Level, i am a level II something? cant find my diagnosis, so it was either clarkes or breslow? hmmm. Sorry!. anyway, my mole was about an eighteenth of a millimetre deep on my back and it has b een removed with a two centimetre margin around it. Doctor says it looks great now and i have nothing to worry about, just to come back for check ups every five months . When i went back for my check up they just looked at my moles said i looked fine and that was it... For everyone who is very sick i am very sorry for you honestly, and my problem must look very minor, but im just wondering is there anything else i should be getting done?Thankyou.

today is a gift and thats why its called the present

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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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bdhf's picture
Replies 21
Last reply 1/5/2012 - 8:22am

Happy new year!  On Dec 13 I was told I had a brain tumor after about 2 months of ongoing headaches.  I thought I had the flu.  On Dec 14 I had a craniotomy to remove the tumor and pathology determined it was melanoma.  I had a primary melanoma in situ in 2007 after the birth of my first child.  I had a second baby just 6 months ago.  I am trying very hard not to connect these things with the pregnancies.  My oncologist says that there is no connection.  Nonetheless, I am working through this slowly trying to figure out our next steps.  I understand that there is more diagnostics to do as they want to verify the node on my lung is not a tumor and a ultrasound of my thyroid as well.  Opthamology exam to make sure my eyes are clear and SRS (gamma knife) to the tumor bed in my brain to get any residual cells.  I am just in shock I guess.  After thinking that there was only a small chance this would ever come back (2-5%) and then to wake up one day and be told I have a brain tumor and stage 4 melanoma was a huge shock and complete life adjustment.  I have been to every dermatology follow up, had lots of other moles removed/biopsied with negative results.  I just don't understand how it happened quite like this.  I have my boys to think of, my husband has been great through all this but I am scared of what the future might hold.  So far, things look good but the scary statistics and stories that are out there don't make it easy.  

I hope there are others with stage 4 on this board that can help me to keep up the faith and hope that this can be beat for the long term and that I will have a long life with my boys!  Best of luck to you all and happy and healthy new year!!!

Brenda

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