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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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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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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Dear People

 

I was diagnosed with Clarks level II in Jan last year and had it removed. I read your stories here on this bulletin board, people who are very sick and who have been through so much and FEEL for you.

While i am now at a stage where i want to make sure no other moles occur and i stay on top of that, i read allyour posts and feel so sorry for what some of you are going through and all the tests you are having and i dont really understand alot of the language/ METS? all these words i am unfamiliar with, and FRANKLY NEVER want to BECOME familiar with.

 

So i am sending you support and think you are all very strong surviving people to be going through what you are dealing with . My father was diagnosed with melanoma three years ago... It came back and unfortunately i watched him pass away april two thousand and ten, as it had reappeared in his spine.. (he never told us that he was a stage four when he had his final removal of melanoma) surely he must have known stage four is not good. But he never told any of us...It was a shock for us to be told he had not long to live.  He did the best he could and just ENJOYED LIFE and everything good in it... He really knew how to enjoy himself and he did that completely in fine style right up until the end. .

 

When he passed away he was still mentally alert and on the ball, unfortunately his body was just giving way... He is at peace now and he went the way he would have wanted to go. Overnight and with a soothing injection  id say of morphine, to ease him into his journey to the other side.

 

I appreciate reading your posts and it helps me to know what he was going through and to feel closer to what he suffered,he never really  complained, even up until the very end, when he was suffereing....I   also  ADMIRE all of you who have such a love of life and who are true survivors. I wish there was a cure for this terrible disease so everyone did not have to suffer so much. It must be very nerve wracking not knowing when these melanomas could appear again, and /or where? in the body... I realise ill have to deal with this issue now for the rest of my life and it is a very sobering experience indeed

 

I thank my dad, for me finding this early on in my body, as if it was not for him i never would have got checked. Thanks Dad xx

 

I wish all of you lots of love and luck.

 

Take care,

Felicity

today is a gift and thats why its called the present

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Specific Lymphocyte Subsets Predict Response to Adoptive Cell Therapy using Expanded
Autologous Tumor-infiltrating Lymphocytes in Metastatic Melanoma Patients
Chantale Bernatchez1, Rahmatu Mansaray3, Orenthial J. Fulbright3, Christopher Toth3, Renjith
Ramachandran3, Seth Wardell3, Minying Zhang1, Jessica Chacon1, Richard Wu1, Priscilla Miller1, Sandy
Mahoney1, Gladys Alvarado1, Michelle Glass1, Peter Thall2, Patricia Fox2, Roland Bassett2, John D.
McMannis3, Elizabeth Shpall3, Victor Prieto4, Nicholas Papadopoulos1, Kevin Kim1, Jade Homsi1, Agop
Bedikian1, Wen-Jen Hwu1, Sapna Patel1, Merrick I. Ross5, Jeffrey E. Lee5, Jeffrey E. Gershenwald5,
Anthony Lucci5, Richard Royal5, Janice Cormier5, Gregory Lizee1 Patrick Hwu1,* and Laszlo G.
Radvanyi1,*
Adoptive cell therapy (ACT) using autologous tumor-infiltrating lymphocytes (TIL) is a promising
treatment for metastatic melanoma that is unresponsive to conventional therapies. Here, we report on
the results of a Phase II clinical trial testing the efficacy of ACT using TIL in metastatic melanoma
patients. Transiently lymphodepleted patients received their expanded TIL followed by two cycles of
high-dose (HD) IL-2 therapy. Altogether, 31 patients were treated with expanded TIL ranging from 8-
150 billion cells. Overall, 15/31 (48.4%) patients had an objective clinical response with one patient
having a complete response. The responses have been durable, with relapse-free survival of >10
months for the majority (10/15) of the responding patients and all responding patients being alive one
year after TIL ACT. Factors associated with objective tumor regression included a higher number of
TIL infused, a higher proportion of CD8+ TIL in the infusion product (P=0.0011), a more differentiated
effector phenotype of the CD8+ population and, unexpectedly, a higher frequency of CD8+ TIL coexpressing
the negative costimulation molecule “B- and T-lymphocyte attenuator” (BTLA) (P=0.0006).
Tumor regression was also associated with the persistence of dominant TIL TCR Vβ clonotypes in vivo
for at least 3 months. No significant difference in telomere lengths of TIL between responders versus
non-responders was evident. These results indicate that immunotherapy with expanded autologous
TIL is capable of achieving high durable clinical responses in metastatic melanoma patients and that
CD8+ T cells, particularly differentiated effectors and cells expressing BTLA+, may be critical in
mediating tumor regression.

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

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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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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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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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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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