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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lyndaloo's picture
Replies 2
Last reply 1/7/2012 - 11:32am
Replies by: lyndaloo, lhaley

Hello - My husband had his third round of ipi last Friday.  I have tried to fill in his profile but cannot get it to work so here is a brief history, he had lung surgery last February and brain surgery in May followed with tomotherapy (targeted brain radiation) and whole brain radiation.  His scans a couple of months ago before starting ipi were ok,  a small tumor in his abdomen and several subcutaneous tumors.  His eyesight has been deteriorating for the last two months and the past week he has been getting headaches with eye pain. Because of the holidays we saw an on-call eye specialist on Monday and they said the eye looks ok but they figure it was a weakened muscle behind the eye and was probably due to the brain  radiation.  We have to see his opthamologist next week when he gets back from holidays.  I called our oncolgist yesterday and they said it is probably a side effect from the ipi and if the headaches get severe in nature and tylenol doesnt' help then to call back.  Our oncologist said to discontinue the steriod eye drops.  My husband cannot read, write or drive,  his eyesight seems to be deteriorating fast and I am worried.  We have to wait until next week to see someone but just wondered if anyone else has had this happen.  I know some people responded to my inquiry last week regarding this.  I am confused though because the eye doctor said they couldn't see any eye pressure yet they blamed it on the eye muscle.  FYI, the ipi seems to be working, all his subcutaneous tumors on his body have shrunk to nothing which is awesome!!  If there is any one else able to respond with anything else, I would appreciate it.

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Whitdonmike's picture
Replies 3
Last reply 1/6/2012 - 7:17pm
Replies by: scots, King, Lauri England

Hi all,

I'm stage IIIC melanoma and currently on a interferon treatment. I'm In the 3 day a wwk shot part of the treatment. I asked my doctor when I might be getting some more scans done and he said I wasn't unless my bloodwork warranted it. Just wondering if anyone has heard or experienced a similar situation.

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Hi all,

I'm stage IIIC melanoma and currently on a interferon treatment. I'm In the 3 day a wwk shot part of the treatment. I asked my doctor when I might be getting some more scans done and he said I wasn't unless my bloodwork warranted it. Just wondering if anyone has heard or experienced a similar situation.

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CLPrice31's picture
Replies 3
Last reply 1/6/2012 - 6:02pm

I have been participating in the ipi/placebo trial at Memorial Sloan Kettering since May. Although I have no idea if I am receiving the drug or not, I have had quite a few of the symptoms.Currently, I am battling joint pain in my hands. My body has felt super sluggish since my second dose of the trial drug and I usually feel like I have a constant hangover; however, this is new. I am only 24 so it seems a bit young for arthritis.... I was wondering if anyone else has had a similiar problem? I have quite a bit of nerve damage in my shoulders/arms due to the surgeries, but only after my 5th dose (the first of the once-every-3-month-sessions) have I been having pains in my fingers. There is swelling and pain in two of my fingers on opposite hands. When I first started the trial, I had pain in my left foot. That has, thankfully, gone away. I guess I have something new to talk to The Wizard--as I kindly call my oncologist--on the 20th. I have had really bad headaches throughout this trial and thanks to my upcoming scans, I am starting to freak myself out......

Thank you in advance for any advice you can share.

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy.

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jmmm's picture
Replies 5
Last reply 1/17/2012 - 1:05pm
Replies by: MariaH, LynnLuc, glewis923, Anonymous

We are attempting a trip to DisneyWorld in a couple of weeks. My husband had a craniotomy at the end of November and gamma knife 2 weeks ago. The neurosurgeon isn't thrilled with our plans, but we don't know how much longer he has and want to have this memory without children. So, we're looking for the "best" hospital in Orlando, just in case. A good neurosurgery department is important. I don't think they'll be any cancer issues, but a good cancer center would be good, too. Any thoughts or ideas?

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Lisa13's picture
Replies 2
Last reply 1/5/2012 - 10:52pm
Replies by: Lisa13, Roxy1453

As dicussed before, I was having some issues which at first scared me, but then my oncologist perscribed me the entocort and immodium, Today I just started the Entocort because I was feeling nauseus.  I know the internet says that nausea is normal with crohns disease and just wanted to know if anyone has experienced the nausea with this problem?   It's very mild nausea and comes and goes. Because of this, I don't have much of an appetite which is completely understandable. 

I just want to know if this is what others have experienced. When I asked my Dr. why he's just giving me a perscription and not concerned about the cancer, he said that the symptoms I was having was colitis.   Since way before cancer, I've had acid reflux and hiatal hernia which have become worse since all my treatment, so it's hard to know what the heck is happening.  Having cancer, anything bothers you even though it could be completely normal.

Isn't it strange how I had no symptoms while on ipi (except for rash and itching) and now, 3 months after finshing, I've got the rash, itchy head, intestinal problems and nausea!  My immune system is definately kicking in again!

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

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Gene_S's picture
Replies 2
Last reply 1/7/2012 - 11:02am
Replies by: vickykay

I have not tried this but it is something I came accross and just thought it might help someone with this problem.  I figure if you have a problem with lymphatic flow it wouldn't hurt to try it. 

No drug exists that has the ability to improve lymphatic flow; however, the job can easily be handled through the topical application of Castor oil," said Dr David G. Williams.

Learn more:

Judy (loving wife and caregiver of Gene Stage IV

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Minnesota's picture
Replies 27
Last reply 7/29/2012 - 10:00pm

I am newly diagnosed from an excision biopsy, and the only information I have is from a phone call yesterday. I meet with a surgeon next week who is going to do the sentinel lymph node biopsy.

All I know is that I have SSM, it was 1.45 mm?, and had a mitotic rate of 5. 

I got the impression from the doctor's phone call that 5 was a bad number.

I am very scared, if someone could give me even a sentence of positive news, I would really appreciate it. Thanks.

Persistence (sometimes) Prevails When All Else Fails

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Richard_K's picture
Replies 6
Last reply 1/10/2012 - 2:39pm

I had scans taken yesterday and got the results today.  Scans were good and I will be cintinuing in the phase II of a clinical trial for Zelboraf.  Starting my 23rd month in the trial.


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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,


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.
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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