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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justlittleoleme's picture
Replies 9
Last reply 12/5/2011 - 9:14am

My husband was randomized yesterday and he received the ipi arm of the trial!

First infusion is Monday.

Any suggestions for what I can do to alleviate symptoms?

What can we expect after the infusion?


We don't know how strong we are until being strong is the only choice we have.

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jmmm's picture
Replies 1
Last reply 12/3/2011 - 7:09pm
Replies by: momof2kids

I posted a couple of weeks ago about being scared of my hubby's craniotomy. Thanks for all the kind words. He sailed through the surgery and came home 48 hours after arriving in the recovery room. Simply amazing. He was walking the halls the next day. So far, no side effects and he's only taken 3 pain pills since leaving the recovery room. There really hasn't been pain at all for him.

So, now he's gearing up for gamma knife on the 22nd. His tumor was 5.5 x6.5 cm. And the doctor couldn't get it all safely with the craniotomy. Any advice on gamma knife would be appreciated.

Also, the pathology came back and shows that the cells were malignant and were shown to have been treated and in the process of dying. This proves, at least in him, that Zelboraf DOES pass the blood brain barrier.

The oncologist has mentioned Temador. He was going to consult with some other specialists, but is anyone using Temador and Zelboraf to help prevent additional brain tumors?

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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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HelperDaughter's picture
Replies 2
Last reply 12/3/2011 - 3:20pm

I've lost two posts now and I'm ready to scream!!  Ctrl+C, Ctrl+C....

Anyway, my question has to do with small intestinal mets and surgery. my mom had mets to brain (removed with SRS & a craniotomy), lungs, and a lymph node.  worst of all, she has a met or mets to her small intestine.  for months now, it's been bleeding and she needed biweekly transfusions of 2 units.  the surgeon said the mass was resectable, but that if "all" she was needing was 2 units every 2 weeks, to stick with that because the surgery would be a rough one.

now, she needs 2 units every week.  it seems like the met is progressing, which is totally depressing since my mom's been on ipi.  she was supposed to see the melanoma specialist yesterday to talk about her first post-ipi scan, but that had to be postponed to mid-december because on Tuesday my mom had a craniotomy for her second brain tumor (the first was 100% eliminated with SRS, and the surgeon said she got all of the second one but wants to do radiation anyway). i almost don't want to know what the PET scan says - i think none of us think it will be good news.  how can it possibly be when she developed a second brain met, has worsening blood loss and the lymph node is still there, all at 20 weeks??

anyway, i feel like this intestinal met is robbing my mom of her will to live and that all of the symptoms she's having are related to it. since she's anemic all the time she's constantly fatigued.  in the past month she's pretty much lost her appetite.  she has severe gas/burping and abdominal pain when eating certain foods.  prior to the craniotomy she did not have nausea and vomiting, but now she does.  she doesn't wretch, it just "comes up" like her body is rejecting all nutrition.  it's so scary.

maybe it's stupid but i feel like this intestinal surgery would be the magic bullet.  if she's not bleeding all the time and anemic, she won't be tired, and if her abdominal symptoms resolve she won't be so miserable.  apparently it would be a bad surgery, though.  it's can't be done laparascopically, so she would have to stay in the hospital for a week and then essentially be on a three-week liquid diet.  this craniotomy business made her miserable and i'm so scared she's not going to want to do the abdominal surgery. if she doesn't do the surgery, she won't feel better and get stronger and potentially want to try some other type of treatment (assuming the ipi is a wash).

anyway, this is a long post to just basically ask if anyone has small bowel mets and abdominal problems/internal bleeding, and/or if they've had small bowel surgery for mets, what it was like, etc, did the symptoms resolve, you know.  


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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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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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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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Lisa13's picture
Replies 1
Last reply 12/3/2011 - 8:31am
Replies by: momof2kids


I wanted to let you know how happy I am to hear your good news!!  I know this feeling very well and I hope you and I can continue good scans for a long time.


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

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Anonymous's picture
Replies 1
Last reply 12/2/2011 - 11:49pm
Replies by: Charlie S

December 1, 2011 — Vemurafenib (Zelboraf, Plexxikon/Roche) should not be used outside of its labeled indication for certain melanoma patients, a group of oncologists writes in an editorial published online November 7 in the Journal of Clinical Oncology.

They say that this new drug and other RAF inhibitors could theoretically cause second cancers over time.

Vemurafenib was approved by the US Food and Drug Administration this year for the treatment of metastatic melanoma in patients with BRAF mutations, and has wowed the oncology community with its efficacy.

Consequently, clinicians could be tempted to try the drug in earlier-stage BRAF-mutant melanoma patients, especially those with high-risk surgically resected disease, suggest the editorialists, led by Mario Lacouture, MD, from the Memorial Sloan-Kettering Cancer Center in New York City.

But second cancers are a potential concern in earlier-stage melanoma patients, who will likely live longer than the typical patient with metastatic disease (9 to 12 months), they warn.

Interestingly, the second cancers of concern are not keratoacanthomas (KAs) or cutaneous squamous cell carcinomas (cSCCs), which have been cited as adverse events in clinical studies of vemurafenib. The editorialists are not especially worried about these 2 skin cancers, which develop in up to one third of all vemurafenib-treated patients. They explain: "The KAs and cSCCs that arise in the setting of vemurafenib treatment are of low metastatic potential, often regress spontaneously, and are easily cured by surgical resection and/or destructive methods (cryotherapy or electrodessication/curettage)."

Instead, there is a theoretical concern about tumors at other body sites.

"It remains unknown whether vemurafenib or other RAF inhibitors will promote the growth of dormant RAS mutant tumors of the lung, pancreas, or other sites," write Dr. Lacouture and his colleagues.

They explain that there is evidence to suggest that vemurafenib promotes the "hyperproliferation of preexistent dormant RAS mutant cancer cells."

How Lung, Pancreas, and Other Cancers Can Occur

To understand how selective RAF inhibitors such as vemurafenib can cause other tumors, one needs to look at an accompnaying genomic analysis of 237 cSCCs and KAs, 19 of which were from patients treated with RAF inhibitors (either vemurafenib or sorafenib), the editorialists explain.

The cSCCs and KAs from patients treated with RAF inhibitors have a mutational profile that is distinct from those that arose sporadically or as a result of treatment with immunosuppressive agents, say the editorialists. Specifically, 21.1% of KAs and cSCCs resected from patients treated with RAF inhibitors were found to have activating HRAS mutations, whereas RAS mutations were rare (3.2%) in tumors that developed in the other patients.

These study results, along with "the rapid appearance of cSCC and KA after initiation of vemurafenib," suggest that the "induction of RAF signaling" by vemurafenib promotes the growth of dormant RAS mutant cancer cells, the editorialists write.

There might be good news for melanoma researchers in this genomic analysis, say Dr. Lacouture and his colleagues. These results might "guide the development of combination strategies" in melanoma, which could result in the synergistic antitumor activity and attenuated toxicities that occur with either drug alone.

In support of this concept, they refer to a recent phase 2 study of the combination of the MEK inhibitor GSK1120212 and RAF inhibitor GSK2118436 in metastatic melanoma. The study, which was presented at the 2011 annual meeting of the American Society of Clinical Oncology, and covered at that time by Medscape Medical News, showed that the toxicity of the combination seemed to be lower than that of either agent used alone.

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Lisa13's picture
Replies 1
Last reply 12/2/2011 - 7:53pm
Replies by: FormerCaregiver

After getting good news on my CT scan from ipi, my blood work showed something completely different.  4 weeks ago, my blood work was great - high lymphocytes and normal blood work in general. After my CT scan, it was all different - low lymphocyte, high WBR, low everything else.  My oncologist is looking into this and wondering if the prednisone I took 13 hours before CT and 1 hour before had anything to do with it. He's also questionning if the gamma knife treatment I had 2 weeks ago is causing some changes in my bloodwork due to inflammation, etc. I feel good, but now worried about these blood tests. How can I sit here and feel good about my CT when my blood work is telling a different story??  All I can think of is my brain now, but they didn't want to scan me again (last scan was 2.5 weeks ago) unless I had symptoms.  Funny thing is, I never had any symptoms when they found the 2 in my head.

I'm too much like a Dr. sometimes when it comes to bloodwork, treatment, etc. I know so much about this disease, that I sometimes surprise my oncologist with some of the medical questions I ask. When you're fighting for the longest life possible, you do everything you can, not to mention your due dilligence!

I truly think my blood work will return to normal in a couple of weeks. Since the day I had my blood work done, it was right after 2 prednisone, benadryl,  CT scan iodine and major stress - not to mention the gamma knife radiation I just had 2.5 weeks ago. Yesterday, my Dr. said "Have a Merry Christmas, your scans look good" and now I"m letting myself get stressed again. 

Just so know, 4 weeks ago, my lymphocytes were 1830 (1.83) and now they're 0.58!!!


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

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AngelaM's picture
Replies 6
Last reply 12/2/2011 - 5:06pm
Replies by: lhaley, AngelaM, Janner, Gene_S

I have just recently been diagnosed with my 3rd primary melanoma in 2 years. The first diagnosis was in Oct 2009 as melanoma in-situ (chest), the second in Jan 2011 as 0.24mm Clark II (upper back) and the 3rd in October 2011 as 0.45mm Clark III mitotic rate 1 (lower back). I live in South Africa, where melanoma is almost unheard of amongst the lay person. Although my doctors are very helpful and caring and they answer all of my questions, I just can't help feeling desperate. I don't understand why I have had so many primary melanomas in the space of only 2 years, and why each one is worse than the previous one. My dermatologist checks me out every 3 months and I have mole scans etc, but still the 3rd one came up out of normal skin (not even a pre existing mole) and wasn't there at the end of June 2011, when I had my last full body photographs taken! I can't believe that it could have grown so fast! It appeared out of nothing in less than 4 months!

No one in my family has ever been diagnosed with a melanoma, but my doctors still say that I must have a hereditary predisposition.

Is it common for people to keep on an on getting new primaries? Is it likely that my last one could have spread (being Clark III)?

I have a 1 year old son and I need to be around long enough to see him grow up, but with a new melanoma popping up out of the blue at every turn I feel less and less positive about my chances.

I also feel like I've become obsessed about this. I think about it all the time. I battle to concentrate at work, and I can't sleep at night because I'm always imagining that I have another invasive melanoma lurking. I check my skin all the time, but that makes it worse because I could swear I see new dots. I'm also paranoid about any pain and I constantly look for lumps under my arms and in my groin. I'm driving myself crazy!

Thanks for any advice


Don't sweat the small stuff. Differentiate between what's important in life and what's not.

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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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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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mom3girlsFL's picture
Replies 14
Last reply 12/1/2011 - 8:34pm

Good Morning,

Had 3mth onc appt yesterday.  Expecting to sched PET scan as we discussed doing every 6mths, last PET was Nov 2010 (clear).  Onc says insurance will not pay for PET unless disease evident (?) and had clear CT of chest, abdomen and pelvis in april 2011.  Long story short - positive node removed last year.  PET showed more. More nodes removed, several w/mel.  Went on interferon after additional node removal.  PET after showed new node.  Had "radical" node removal, several nodes again w/mel.  Off interferon, PET in November 2010 clear, CT chest, abdomen, pelvis clear in April 2011.

Come home and discuss w/hubby.  All is well...until this morning.  Hub wakes me up at 6am says he's been up since 11pm thinking about all this. " Is insurance the only reason not doing PET?  Let's see if we can get one ourselves...Don't you understand what the PET does? I know you had CT, but what about your brain?..." and on, and on, and on...

Please, please don't be mad at hubby.  After I settled with his bombardment I truly understand he is coming from a place of love (although he had an odd way of showing it sometimes).  I told him to call the onc.  Don't know what else to say.  We all deal w/our battles each morning when we decide to think about it all day or go on with the beautiful gift of another day we have.

I hope I am not being ignorant and just assuming if the onc is okay, then I am okay.  On a side bar - this is not my original onc it is a 2nd opinion onc after the 1st onc didn't know what to do after my very first node "lit up" on a PET - at the persistence of my hubby we went to the 2nd onc for our treatment plan.  Basically, my hubby "saved my life" so I do value his opinion.

Thanks for your input.  Hope I didn't get too confusing for you.


Do not fear tomorrow, God is already there.

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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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