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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Denise's picture
Replies 5
Last reply 12/3/2011 - 6:39pm
Replies by: Anonymous, eaca, Denise, DonnaK, Fen

Hello.  My mother was recently diagnosed Stage 2b and is having surgery on December 14th.  Her doctor (Dr. John Kirkwood in Pittsburgh) has recommended interferon therapy following.   I've researched it and it does seem scary.  I'm particualry curious if anyone has personal experience with an older patient on this treatment?   I understand there will be side effects, and that all patients react differently, but any insight/advice would be greatly appreciated.

Praying for a CURE not only for my mother but for all melanoma patients!   St. Jude, please pray for us.

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Kim41's picture
Replies 11
Last reply 12/7/2011 - 11:52pm

I had lymph nodes removed from left groin 3weeks ago and now noticed a hard lump beside lower part of incision. Has anyone ever had this. I dont think its scar tissue and it feels hard and oblong. Worried its a lymph node they may have missed. I still have my drain in and it seems to be working fine. I will call Doctors office in am. Just thought someone may have has this same problem. Thanks.

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Steffiellie's picture
Replies 2
Last reply 12/3/2011 - 9:54am

Hi there,
I'm a 31 female with stage 3 melanoma. I'm currently in my 7th month of intron a @15million units. I have had the majority of the side effects and have been unable to work throughout this process. It sucks, and I feel weak and tired all the time, but I know it could be much worse! Sometimes the days fly by, sometimes the weeks drag, but we carry on and make lists of fun things to do after interferon!!
The last couple months I've had heart palpitations quite regularly and my oncologist says it's not related to treatment. I was very active, athletic and healthy before all this. I'm curious how it could be unrelated.... I'm pretty sure I've gone into Afib with HR 182 as well but ER couldn't catch it. I've increased my fluid intake in case it was dehydration to no avail. I've finally seen my family doc to get an echo and holter monitor and see what's up, but i worry what effect this is really having on my heart long term? Has anyone had experience with cardiac complications? I wonder whether my dosage should be tapered?
Suggestions, advice are welcomed!

Life is precious and it's way to f*cking short. Don't delay the happy. (Cathy -The Big C)

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alicia's picture
Replies 2
Last reply 12/7/2011 - 2:54pm
Replies by: Anonymous, MariaH

I posted earlier about my friend who just found out melanoma has spread to liver, splee, and spine. He just started radiation today, getting 10 doses to the spine then the oncologist wants to start him on temodar when he finishes radiation. He is braf positive and I would think she would recommend one of the newer braf inhibiting drugs. He is seeing his local oncologist who is not a melanoma specialist because he's not well enough to travel to Vandy to see his Mel specialist. I recommended he at least call his dr at Vandy to see what treatment they would suggest or have his local dr make a suggestion. What are your thoughts? Are any of you doing temodar in this similar situation and are you seeing good results? That's so much for your time and help. Much love!!!!!

Alicia stage 3 w/ mult primaries

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robbier's picture
Replies 6
Last reply 12/7/2011 - 4:23pm

Looking for patients that are either being currently being treated with interferon alfa or have been on this drug to see how it affects them, it has been recommended that I use this therpy and will go back and see myDr. on Dec 13th to give him my answer.    Any replies would be most appreciated at this time.

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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robbier's picture
Replies 3
Last reply 12/8/2011 - 9:34am
Replies by: Lauri England, Mike A, awg

Looking for patients that are either being currently being treated with interferon alfa or have been on this drug to see how it affects them, it has been recommended that I use this therpy and will go back and see myDr. on Dec 13th to give him my answer.    Any replies would be most appreciated at this time.

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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jmmm's picture
Replies 4
Last reply 12/2/2011 - 4:56pm
Replies by: lhaley, HelperDaughter

My husband had a craniotomy yesterday. All went well. The surgeon had to leave a little bit of the tumor, so as to not cause any motor damage. Before he was even out of surgery, the neurosurgeon was telling me that he would need WBR. The oncologist is recommending gamma knife. We're so confused. What are pros and cons to each? How soon after a craniotomy can they safely do radiation. He's just begun recovery from the craniotomy and we're already overwhelmed with the next step. Any advice would be appreciated.

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Angela C's picture
Replies 5
Last reply 8/12/2013 - 8:17pm

Good Morning.

I had my fourth dose of Yervoy on 11/8. For about the last week I have been dealing with blurry vision and low blood pressure. Normal for me is about 105/65. Last night my blood pressure was 89/59. I've done Interferon, IL-2 and was on the MDX-1106 trial. I experience some level of blurry vision with all of them. For whatever reason, drugs really effect my vision. But, I know that low blood pressure can also cause blurry vision.

Has anyone else experienced blurry vision or low blood pressure while on Yervoy? I see my oncologist next Tuesday for scan results from the first scan after treatment. I plan on talking to him about this then, but just wanted to see if anyone else had experienced it?



Be kind, for everyone is fighting a great battle. -Plato

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melanomabegone's picture
Replies 23
Last reply 12/15/2011 - 2:46pm

I just joined and this is my first post. When I register there was a place to upload a picture and I didn't know that it was supposed to be a picture of myself and I uploaded a composite picture of my melonoma treatment in progress showing the tumors shrinking. Is there a way to post pictures? Please assist.

Work with your body and cancer can be beaten.

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Anonymous's picture
Replies 3
Last reply 12/5/2011 - 7:39pm


Val, how are you doing!

I am been traveling & trying to catch up on everyone. I cannot find out anything from Valin from Canada. Anyone heard from Val?

Hoping the best for you Val.

God Bless


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Anonymous's picture
Replies 5
Last reply 12/2/2011 - 3:20am

Could anyone on this forum tell me is Mek trial is effective after zelboraf?

I have read that braf/mek combos are effective treatments.

Can people still participate in Braf/Mek trials after taking zelboraf?

don't back up, don't back down

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boot2aboot's picture
Replies 3
Last reply 12/3/2011 - 2:18pm



GEN News Highlights: Nov 30, 2011

Engineered Blood Stem Cells Form Cancer-Killing Lymphocytes In Vivo



Scientists say human blood stem cells can be engineered to develop in vivo into fully functionalmelanoma-killing lymphocytes. A multidisciplinary University of California Los Angeles (UCLA)-led team engineered human hematopoietic stem cells (hHSCs) to express a melanoma antigen, and then reimplanted these cells back into a humanized mouse model carrying human thymus and other organs. The animals subsequently generated melanoma-specific naive CD8+ T cells, which were able to clear melanoma tumors without any additional manipulation. Encouragingly, the transduced hHSCs established long-term bone marrow engraftment.

Jerome A. Zack M.D., and colleagues report on their studies in PNAS in a paper titled “Antitumor activity from antigen-specific CD8 T cells generated in vivo from genetically engineered human hematopoietic stem cells.”

The feasibility of using autologous T cells engineered to express a natural T-cell receptor (TCR) specific for the melanoma-associated antigen recognized by T cells 1 (MART-1) has already been demonstrated in patients, the authors write. However, the approach does have some drawbacks, including the potential generation of autoreactive clones when introducing a TCR into peripheral T cells, and the need to extensively manipulate T cells prior to transduction, which can lead to loss of potency and ability to become long-term memory cells. Also, while peripheral blood T cells used in the procedure can trigger strong immune responses, they are generally not long lived.

Circumventing these problems could be accomplished by using genetically modified hHSCs to generate functional antigen-specific T cells, the authors continue. Indeed, some work using murine progenitors has been undertaken, but the use of human progenitors to generate human transgenic T cells has to date been restricted mainly to in vitro studies. The UCLA team has previously used severe combined immunodeficient (SCID)-hu mice bearing human thymus/liver (thy/liv) implants to generate HIV-specific cytotoxic T lymphocytes (CTLs) from transduced hHSCs. They have now expanded their research by using a modified version of the bone marrow/liver/thymus (BLT) humanized mouse model, which contains a human thymus, enables long-term peripheral immune reconstitution, mimics the human immune function, and is an effective model to test transgenic T-cell functionality in vivo. The aim was to generate transgenic CTLs carrying MART-1, and test the antitumor effects in mice carrying both matched and nonmatched human melanoma tumors.

The team transduced human hematopoietic progenitors with an HLA-A*0201–restricted, melanoma-specific TCR, and reconstituted the thy/liv implant with a mix of transduced and non-transduced progenitors, followed by an intravenous injection of autologous transduced progenitors. In multiple experiments using this approach, high levels of mature circulating CD8+ T cells that expressed the MART-1–specific TCR were observed 4–6 weeks after injection. The majority of circulating CD8+MART-1+ T cells displayed a naïve T-cell phenotype. Importantly, the authors add, only rarely was the MART-1-specific TCR expressed on CD4 T cells, providing a strong indication that the transduced cells underwent proper T-cell lineage-commitment processes. In addition, there was no expression of the MART-1 TCR on mature CD8+ cells in mice that had thy/liv implants that did not express the HLA-A*0201 molecule.

Animals were then challenged with one of two types of melanoma tumor in each shoulder. One tumor, M202, could serve as a target for the transgenic CTL, and the other, M207, couldn’t. Encouragingly, the M202 tumors regressed over time when compared with the nontarget M207 tumors. “More specifically, when comparing the M202 and M207 tumors in mice receiving transduced progenitors (treated mice), M202 tumors were targeted in seven of the nine treated mice, and four of nine mice cleared the M202 tumors,” the authors write.

The authors then used flow cytometric analysis and PET imaging to detect the presence of reporter-tagged transgenic tumor-inflitrating lymphocytes (TILs) in both the HLA-matched and nonmatched tumors. These analyses confirmed that at six weeks after tumor injection (before the tumors had started to regress), there were statistically significantly more transduced peripheral blood cells in the M202 tumors than in the control M207 tumors.

Ex vivo stimulation of transgenic CTLs taken from the M202- and M207-bearing humanized mice indicated that the cells maintained their antitumor activity, and a direct cell killing assay demonstrated that the MART-1-specific CTLS were also able to kill the specific HLA-A*0201+ targets effectively. Phenotypic characteristics of CD45+CD3+CD8+MART-1+ cells in the spleens and blood of transgenic animals supported the high level of CTL activity exhibited by the MART-1–specific CTLs, the authors continue. Compared with control animals, those receiving TCR-transduced HSCs had significantly higher levels of CD25-expressing cells receiving, suggesting the presence of activated T cells. There were also naive, central, and effector memory cells, as well as terminally differentiated cells in the spleen. In contrast, the CD8 T cell population in control mice was predominantly naive.

Further supporting the notion that transgenic CTLs were responsible for the anticancer effects, there was a correlation between tumor metabolic activity and levels of reconstitution or ex vivo cytolytic activity. Higher ex vivo CTL activity correlated strongly with decreased tumor growth and clearance of the tumors, and animals demonstrating a higher percentage of CD8/MART-1+/TCR+ cells in the spleen more efficiently tackled tumors than those exhibiting less reconstitution of transgenic cells.

Finally, the researchers determined that the transduced CD34 cells stably repopulated the bone marrow of irradiated recipient mice. Indeed bone marrow samples from the treated mice exhibited significant levels of integrated vector and expressed the reporter gene on stimulation.

“We have demonstrated as a proof of principle the therapeutic efficacy of a stem cell-based genetically enhanced immune response against melanoma and established a viable and successful model for testing new, alternative therapeutic approaches for chronic diseases such as cancer,” they conclude.

don't back up, don't back down

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Lisa13's picture
Replies 10
Last reply 12/1/2011 - 8:13pm

My 12 week scan was good news and now the 16th week scan after ipi is still good. Had my scan today and was told I have no new mets anywhere.  The mets in my lungs are still shrinking (slowly) and the rest are remaining stable.  My Dr. was very happy and said he'd see me in 2 months.  I also asked about getting a brain MRI since I had 2 brain mets gamma knifed, but he said he's not concerned, unless I have symptoms.  If the ipi is working on my current  cancer in the lungs, then maybe it will keep the brain mets from coming for awhile.

2 other things I learned today that is also great news.  My hospital in Toronto, Canada starts Anti-PD1 trials and is open to people who've done ipi.  He said if I progressed, I could either do ipi or Anit PD-1.  He also told me that he's had a great few weeks seeing some patients with bad scans at Week 12 and now good responses at week 16 and 20. 

I know there's no cure for this cancer, but at least I can feel happy about things now.  It's also great to hear some Dr's had patients on this drug who are still kickin' it 4 years and some 8 years later!!

One other thing I wanted to mention.  For those of you who may respond to ipi, don't ever think that you now have a couple of months extra to live (which is what these stupid stats talk about). Believe that you could be someone lucky enough to last much longer. A positive mind is half the battle and you can't give up.


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

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mygirlmaddy's picture
Replies 5
Last reply 12/3/2011 - 2:25pm

After two miserable months of non-stop vomitting, nausea and increasingly intense pain, scans show that the Carboplatin/Taxol combination has not worked for my husband.  We were told yesterday that he has several more sites and significant growth in all existing sites.  For the first time, he does have cancer on an organ (his liver).  There is a tumor eating through the bone in his wrist, which has already been operated on once but continued to grow, but he cant be operated on or he could not start the newest, and final treatment being offered by his doctor (Abraxane/Avastin).  We were told that we could expect that in the next 3 to 6 months either the cancer would spread to internal organs and cause failure, or the tumor burden would become so great that the toxins in his blood will likely cause organ failure.  This new treatment could slow things down, but could also cause heart attack or stroke. 

I can't stand to see him so miserable.  He is nauseous and in pain all the time.  He just got a fentanyl patch and started on Morphine, so today has been thankfully better than the past week. 

I know there is no question in my ramblings, just needed to share it and not have to deal with all of the human emotions it evokes when I tell family and friends.

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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Tracey's picture
Replies 3
Last reply 12/1/2011 - 9:43am
Replies by: Tracey, FormerCaregiver

Hi all!
Looking for a bit of guidance to offer the doctors caring for my husband, Steve.

Steve was diagnosed in June with Leptomeningial Melanoma, that had also metastised in a lymph node and also has a little something posterior spine at about T4. Biopsy of his lymph node tested positive for the BRAF gene mutation and he began treatment with Vemurafenib and has responded really well. Last LP showed scant cells in fluid, lymph node had shrunk over 70%, as had spot on spine. (there is something questionable regarding his spleen, but oncologist is not too worried about it). He had experienced side effects which cleared when his dose was reduced to 720 mg twice a day.

Here's the mystery. He is suffering from nausea and vomit, migraines and sixth nerve palsy over the last week. He had become quite dehydated over the weekend and a bit out of sorts. There is inflammation creating pressure and indicating poor drainage of spinal fluid. Why might that be?

We are living in Kelowna, BC and receiving treatment out of Vancouver. Steve is in hospital where we live and doctors here seem to be at a lose, and they are working really hard and feel he is well enough to continue his treatment. Our team in Vancouver is not offering any guidance except steriods. No one here or in Vancouver has much experience with leptomeningial melanoma except for Steve's case. We certainly don't want him off the drug as we are afraid this is the only option. I think we need any suggestions as to what else to look for quickly. I certainly would be so very grateful for input.

With all my heart, thank you!

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