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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mygirlmaddy's picture
Replies 16
Last reply 1/10/2012 - 5:17am

After a non-stop battle of almost two years, my husband died the day after Christmas.  Despite repeatedly having unsuccessful treatments, he never gave up.  He had a treatment just one week before succumbing to an infection and was practical joking just days before.   If he were here to talk to all of you, he'd tell you he didn't regret trying every possible option and maintaining hope for himself and our daughter and me. 

Thank you for all of the support I have found on this site.  The human spirit continues to amaze me.  My wish for all of you is peace with whatever your path is and the courage to take it.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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Phil S's picture
Replies 4
Last reply 1/9/2012 - 8:56pm

Quick background, Phil was diagnosed with mucosal melanoma two years ago, became Stage IV with lung mets in July, and then a brain tumor the end of September. Phil had craniotomy and WBR and I got us to MD Anderson in November, he has completed two rounds of biochemo here in Texas. Yesterday, we learned the wonderful news that his scans show stable brain MRI, and his CAT scan shows significant shrinkage on all his body mets, the doctor was thrilled, we are too! When we got to Houston in November, Phil's cancer was spreading fast and the doctor said to us, we need to change its direction, so we feel that direction has definitely changed for now! Phil just started his 3rd round of biochemo, and feels motivated to get thru this tough treatment now that we know it's working. He only really complains about fatigue, but I tell him that's totally normal between brain surgery, radiation, and biochemo. He still is able to work a little over one week in each 21 day cycle. So, we fight another day, and keep in mind all the warriors we have lost and all those currently in the battle right along side of us! God Bless and Happy New Year! Valerie (Phil's wife)

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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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Replies by: boot2aboot

Inhibition of BRAF(V600E) Relieves IL-1– mediated T Cell Suppression by
Melanoma Tumor-associated Fibroblasts
Jahan S. Khalili, Shujuan Liu, Tania G. Rodríguez-Cruz, Mayra Whittington, Seth Wardell, Chengwen
Liu, Jieqing Chen, Minying Zhang, Yufeng Li, Richard W. Joseph, Suhendan Ekmekcioglu, Elizabeth
Grimm, Laszlo G. Radvanyi, Michael A. Davies, Patrick Hwu and Gregory Lizée
The BRAF oncogene demonstrates a characteristic mutation (V600E) in a significant fraction of
cutaneous melanomas, leading to constitutive activation of the MAP kinase pathway. This genetic
lesion endows tumor cells with proliferative and survival advantages, and metastatic melanoma patients
treated with the BRAF(V600E)-specific inhibitor vemurafenib have shown dramatic clinical responses.
Here, we show that BRAF(V600E) induces transcription of the IL-1α and IL-1β genes in both
melanocytes and melanoma cell lines and that this upregulation is specifically abrogated by targeted
BRAF(V600E) inhibitors. Furthermore, treatment of melanoma tumor-associated fibroblasts (TAFs) with
IL-1α/β significantly enhanced the ability of TAFs to suppress the proliferation and function of
melanoma antigen-specific cytotoxic T cells. IL-1α/β treatment of TAFs upregulated multiple
immunosuppressive factors, including COX-2 and the PD-1 ligands PD-L1 and PD-L2. Specific
BRAF(V600E) inhibitors largely abrogated the ability of melanoma cells to confer T cell-suppressive
properties on TAFs. These results support a model in which BRAF(V600E) promotes immune
suppression in the melanoma tumor environment through an IL-1-mediated mechanism involving
resident stromal fibroblasts. Based on these findings, combination therapies involving targeted BRAF
inhibition and T cell based immunotherapies are warranted.

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

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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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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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