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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mombase's picture
Replies 3
Last reply 10/19/2011 - 7:42pm
Replies by: mombase, jag, triciad

Wow, nothing really fit to print! I had my second infusion yesterday morning, and I have fewer side effects (so far) than I had after the first infusion! I met briefliy with my onc and he said that my numbers from blood tests are great. I couldn't be happier right now. Oh, shoot, here come the tummy rumbles!

Cristy, Stage IV

Getter done!

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justlittleoleme's picture
Replies 13
Last reply 10/19/2011 - 2:48pm

Long week last week.  We met Tuesday with the surgeon for a post op check up.  She removed a skin tag that was disrupted during surgery (path came back clear!)   We met with Dr. Christopher Lao at University of Michigan.  He went over the same three options the other oncolgists did.  Wednesday we met with the local radiation oncologist.  Friday back to IU Simon Cancer Center.  First stop brain MRI (clean!!!!) next with our oncologist Dr. Leslie Fecher.  We enrolled in the E1609 interferon vs. ipi.  Our only basic option since he is Stage 3B.

Radiation starts tomorrow and he will have five treatments.  We are waiting to hear all the goodies about the trial.

Not looking forward to moving away from our kids for a month if we get the interferon arm but it will all work out.

Please share your experiences with interferon, ipi or radiation.  Any tips?  I have Jane's website bookmarked!

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

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Hi everyone,

Haven't posted in a long time (maybe 3 years ago or so), but I occasionally pop on to see how everyone is doing. Well I'm here today b/c I have a few questions. A little background info on me: I was diagnosed in 2003 with stage 1 mel on my back, then stage 0 (thin mel) on my left arm in 2005, then in 2006 I was diagnosed with stage 3a mel on the back of my right leg with micromets to 1 node in right groin. I had all the lypmh nodes removed in my right groin, then started interferon in Feb. of 2007, which I ended in Oct. 2007 b/c of side effects and depression. I've been cancer-free since.

Fast forward 3 years and I received the go-ahead from my oncologist to start trying to have a baby (I'm 29 yrs old, almost 30). I got pregnant pretty quickly in Feb. 2011, but had a missed miscarriage in April -- no heartbeat found at my 12 week ultrasound (baby measured around around 7 weeks). I had a d&c several days later. Now skip ahead to September and I found out I was pregnant again. At 7 weeks, we had an ultrasound and found a strong heartbeat (156bpm). We were really excited, the doc said after you see a heartbeat the risk of miscarriage goes down to 5%. Well a few days later, I had a bit of spotting and they had me come in for another ultrasound; this time the heart rate had dropped significantly (down to 100bpm), and there was little growth. This was early last week. On Monday, I had another ultrasound to confirm the heart had stopped, which it did, and I was scheduled for a d&c, which happened yesterday - I was almost 9 weeks. The doc will be doing some testing at 6 weeks post-miscarriage to see if I have a blood clotting disorder, and if I do, it would prevent the placenta and baby from developing properly. Hopefully I'll have some answers in a couple of months.

So here are my questions:

 - Before I had the interferon, I was told it would probably not interfere with fertility, but of course I have to wonder... have any of you had problems with miscarriage after interferon?

 - I'm also wondering if all these ups and downs with my hormones (with the last 2 pregnancies over the last 9 months) could somehow affect my health negatively at some point, and possibly cause me recur or get a new primary? I have many moles, so I see a derm and oncologist every 3-4 months. I seem to develop new moles all the time. Guess I'm worried that all the ups and downs with my hormones could possibly make my moles change more rapidly. Also, at some point in the last year, I developed a mole inside my eyeball, discovered at my last eye appointment a couple months ago. No idea when it actually developed, I just know it happened in the last year. The eye doc said it's fairly common, about 10% of the population have a mole or "freckle" in their eye, but this really freaks me out, my great-grandfather died from melanoma in his eye.

 - Finally, if they do find I have a blood clotting issue, they'll recommend a baby aspirin every day and they'll also prescribe Lovenox, an anticoagulant, which would be an injection I'd take each day starting when I get pregnant again. So, my question and I hate to think about the worse case scenario, BUT worst case scenario, I develop mel while pregnant, and if my blood is thinner, could the cancer travel around faster? I just have no idea.

My derm and oncologist have both said in the past that pregnancy can change moles, but there's no definitive link between pregnancy and melanoma. Tomorrow I have my regular appt with my oncologist and will ask him all my questions, but I'm just wondering if any of you have any experiences with pregnancy, miscarriage, and melanoma.

My husband and I are talking about trying one, maybe two, more times and if it doesn't happen, or there's a chance that my health could be negatively affected by all these pregnancies/miscarriages, then we'll seriously look into adoption.

Thank you in advance for any advice and/or experiences you can share!

Never say never...

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SStamps's picture
Replies 6
Last reply 10/19/2011 - 1:04pm

My husband received his last ipi treatment at the end of September we have gone back for CT and MRI all tumors are shrinking some brain mets do not show up. We do not go back to Houston until November 21st for another CT and MRI.  So the last couple of weeks have been great, Mickey (my husband) has been more active working longer hours and back to golfing.  Today he is defending his club champion title and I am so happy for him that he feels good enough to play.  So this week he has been complaining of pain in his left buttock.  When he sits to relax or getting out of vehicle he is stiff and hurts when he takes a few steps.  He said it feels a better and swears it is a muscle.  After searching I am concerned.  I will call Dr tomorrow but can anyone tell me if it feels like a sore muscle?

Thanks

SStamps

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Staci's picture
Replies 6
Last reply 10/19/2011 - 12:52pm
Replies by: boot2aboot, Tim--MRF, Staci, Anonymous

Does anyone have any experience wiht Yttruim 90 for liver mets? Any insight would be welcome please.

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deardad's picture
Replies 9
Last reply 10/19/2011 - 7:22am

Well I am elated to share this news with you all.

First month scans results on vermurafenib find that my dad has had a complete metabolic response. Only a week ago a lump popped up on his neck and we were all disheartened at the thought that he wasn't responding. It did not come up on the PET and they are putting it down to an inflammed lymphnode due to a cold. His previous liver and spleen mets.....were not visible on scan, the brain is apparently clear as well...although Im not sure whether they had MRI results. I didn't go to the appointment and my dad doesn't ask a lot of questions, but I assume that's clear too (the oncologist said that it was clear - according to the PET). He still has to see the neurosurgeon as a follow up and MRI results go to him.  

I am aware that this by no means a cure, but definately the best result we could have expected. The oncologist felt that he could confidently justify taking his findings to the US regarding the use of this drug in patients with a low tumor burden. 

I don't know what this means for the future for my dad, but I hope this will encourage others.

I would like to see a combo of IPI and b raf but it's not going to happen for my dad. He is technically on a trial so I suppose we wait and hope that he continues to respond. 

Nahmi from Melbourne

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Lisa13's picture
Replies 5
Last reply 10/18/2011 - 10:50pm

Last Thursday was my 4th ipi infusion. Last night I woke up in the middle of the night with the craziest itching ever. Benadryl took care of it. This afternoon, the itch has returned and it feels weird. It feels like I'm getting goose bumps and I feel a bit chilled and then the itching happens (mostly on my scalp, arms and back). I have very small non coloured bumps on my arms and back. Has anyone experienced this? I know the itch is normal as I've had itchy, dry skin since the 2nd infusion, but now it's getting worse. 

Lisa - Stage 4 

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

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cwu's picture
Replies 10
Last reply 10/18/2011 - 10:39pm

Dad had his second dose of Yervoy on Monday.  Yesterday he experienced mild diarrhea and dizziness.  He had a little diarehea after his first dose three weeks ago and the nurse told us that he could take Immodium.  Yesterday's diarrehea was very mild so he didnt have to take Immodium and it went away.  However, his dizziness continues today and I called the nurse.  Was told to monitor him and if his dizziness gets worse or doesnt go away, we should take him to the MD Anderson ER to get him checked out.  His dizziness is off and on.  I read on the Yervoy medication pamphlet that dizziness is a symptom of problems with thyroid or pituitary glands.  He doesnt have any other symptoms other than dizziness.  Has anyone experienced this and if so when should I take him to the hospital? What medication did they give you to treat dizziness? I want to keep him safe since Yervoy side effects can be very serious but on the other hand i dont want to freak out and make numerous visits to the hospital.

Thank you.

Chau

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ad2424's picture
Replies 1
Last reply 10/18/2011 - 10:56am
Replies by: Lisa13

Hi All - I had a nodule removed from my lung 3 months ago. My scan yesterday showed a 6 mm in the other lung that had increased from 2 mm 3 months ago, and 2 new 3 mm nodules. The report also comments on additional smaller nodules, possibly new.

So much for having a short break from this.

My oncologist is suggesting I start on Yervoy now.

I suggested more surgery but he said there are probably too many to get and possibly other microscopic that would be missed.

I also suggested waiting a month to see if it grows more to be sure it is a met. He thinks it definitely is.

Is my presentation the target audience for Yervoy?  Is that the obvious anwer or are there other options?

Thanks, Steven.

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lhaley's picture
Replies 3
Last reply 10/17/2011 - 11:54pm

The day was eventful at least with the procedure itself.  However it has already shown growth.  They have moved the MRI update to 4 weeks instead of 6 just to make sure. 

Details are on my Caring Bridge and much easier to post.

By the way, I do feel pretty well tonight!

Linda

http://www.caringbridge.org/visit/lindahaley

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 Eleventh International Conference on Progress in Vaccination Against Cancer 

 10 - 13 October2011 Copenhagen, Denmark

Dr.Thomas Gajewski

University of Chicago, Chicago, IL, USA

Immunotherapeutic approaches for the treatment of melanoma, such as tumor antigen-based vaccines, can frequently boost immune responses. However, clinical responses as measured by tumor shrinkage are seen in only a minority of patients. This observation has prompted careful analysis of the tumor microenvironment for biologic correlates to clinical response and also to identify mechanisms of tumor resistance. Patients with advanced melanoma treated with antigen-specific vaccines had pre-treatment tumor biopsies analyzed by gene expression profiling. Supervised hierarchical clustering was performed based on clinical outcome. An expanded bank of tumors was analyzed to increase the sample size and better understand gene patterns.

Two major categories of melanoma metastases have been observed.

 

One subgroup of patient has an inflamed phenotype that includes expression of chemokines, T-cell markers, and other immunoregulatory factors. Clinical responders to melanoma vaccines appear to fall within this subset. This group also contains the highest expression of negative regulatory factors, including PD-L1, IDO, and FoxP3, suggesting that these immunosuppressive mechanisms may dominantly inhibit anti-tumor –cell function in those patients. In addition, absence of B7 expression supports classical T-cell anergy. Preclinical experiments have confirmed a critical role for these mechanisms in limiting anti-tumor T–cell efficacy in vivo, giving candidate treatment strategies for translation back into the clinic.

 

A second subset of patients is represented by tumors which are non-inflamed and lack chemokines for T cell recruitment. Therefore, a major barrier in these cases appears to be failed  T–cell migration into tumor sites. Experimental strategies to augment T-cell migration can have important anti-tumor effects in preclinical models. The presence of the "inflamed" gene signature was associated with a type I IFN transcriptional profile, and murine experimental models have confirmed a critical role for type I IFN signaling in promoting adaptive immunity.

So one subset tumors has  a suppresive nature that may be over riddden by Anti-CTLA-4 (Yervoy) and or Anti-PD-1 Therapy

The second subset is missing the "danger signal"

 

Cytokines are small proteins which allow cells of the immune system to communicate with one another via cytokine receptors expressed at the cell surface.

Activated macrophages defend against tumors by secreting cytokines to recruit secondary immune cells, presenting antigen to T cells, and by direct tumor cytotoxicity. Peritoneal macrophages harvested from melanoma-bearing mice are less cytotoxic to melanoma cells, and produce less superoxide, nitric oxide, and tumor necrosis factor-alpha (TNF-alpha) than those from nontumor-bearing mice. Similar impairment of macrophage activation occurs in vitro using media harvested from cultured melanoma cells.

Stimulation of Toll-like receptor 4 (TLR-4) activates macrophages and results in the release of TNF-alpha. It is hypothesized that melanoma inhibits macrophage activation by suppressing TLR-4 signaling.

http://2.bp.blogspot.com/-4TLHwjIx_XU/TpSCg80EcVI/AAAAAAAAAh4/j_EKCkplea4/s1600/Danger%2BSignal.jpg 

Cytokines are small proteins which allow cells of the immune system to communicate with one another via cytokine receptors expressed at the cell surface.

Activated macrophages defend against tumors by secreting cytokines to recruit secondary immune cells, presenting antigen to T cells, and by direct tumor cytotoxicity. Peritoneal macrophages harvested from melanoma-bearing mice are less cytotoxic to melanoma cells, and produce less superoxide, nitric oxide, and tumor necrosis factor-alpha (TNF-alpha) than those from nontumor-bearing mice. Similar impairment of macrophage activation occurs in vitro using media harvested from cultured melanoma cells.

Activated Macrophages secrete the following cytokines under different conditions:

IL-1,IL-12,IL-6, IFN -gamma and TNF-alpha

 

 

 

So, if Melanoma suppresses Macrophage Activation, then the tumor microenviroment is missing IL-6 and other cytokines. 

Interleukin 6 is a pro-inflammatory cytokine and is produced in response to infection and tissue injury. IL-6 exerts its effects on multiple cell types and can act systemically.

IL-6 stimulates liver secretion of acute phase proteins

IL-6 stimulates liver secretion of acute phase proteins

IL-6 stimulates B-lymphocytes to produce antibodies

IL-6 in concert with IL-1 causes T-cell activation

IL-6 induces STAT 3 Signaling

IL-6  Plus TGF-b induces the Th17 cell phenotype

http://4.bp.blogspot.com/_QjnhWpqRSpg/TJYpQ_j4XrI/AAAAAAAAASk/3zRkLayHDkk/s1600/Differences+in+Functional+profiles.jpg 

If you look at the above  micrographs, you will see that the two patients that had Relapsed (10710 and 10737) had IL-1b and IL-6 missing. The  Macrophages were not activated!!!! The "Danger Signal " known as inflammation was missing!

The missing combination of IL-1 and IL-6 meant no T-cell activation. And no induction of the Th17 phenotype. It is now becoming a lot more clearer based on Dr. Gajewski's findings.

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Lisa13's picture
Replies 1
Last reply 10/17/2011 - 1:55pm
Replies by: AlanM

Last Thursday was my 4th infusion. I've been tolerating Yervoy (ipi) very well with very limited side effects. Last night, I woke up in the middle of the night with the worst itching on my head and arms. I also had a small rash on my arms. My body felt like I was having an allergic reaction, so I took a benadryl and the itching and rash went away.  Today, I'm experiencing a bit more rumblings in my stomach so my immune system is obviously revved up and hopefully doing what it needs to do.

This just goes to show you that symptoms don't always come on this drug. The immune system needs time to work and when it's ready, it let's you know!

Lisa - Stage 4

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

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dawn dion's picture
Replies 21
Last reply 10/17/2011 - 12:40pm

I know lots of folks here take curcumin and I have been considering taking it myself.  Anyone know how much a person should be taking?    Thanks for the info.

Hugs and Smiles

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Jeannie C's picture
Replies 9
Last reply 10/17/2011 - 9:10am
Replies by: Jeannie C, LynnLuc, Anonymous, Janner, Jamietk, jackiewin

I was diagnosed July this year with stage 2 melanoma. on the side of my nose. I just had a third surgery Oct 12th, undoing  the forhead flap graph. Now i have a few cosmetic procedures to follow, but I'm concerned about the melanoma recurring. I was treated at Sloan Kettering in NYC, and I'm wondering why no one there mentioned cat scans as part of future screening. I was led to believe skin examination every 3 months would be sufficient. Sentinel lymph node biopsy came back negative, so I figured I was in the clear. ???? I always thought melanoma was an "external" cancer, not something that could affect the brain, lungs etc??? Do I need to seek out another doctor?

Life is, you are, be. The great cosmic imperative is to simply be.

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j.m.l.'s picture
Replies 2
Last reply 10/17/2011 - 8:44am
Replies by: Lisa13, momof2kids

I am past my second dose of yervoy. I have experienced almost no side effects. Some constipation, one bit of itching and thats it. DOES ANYONE HAVE ANY IDEA WHETHER THE IPI IS WORKING AT ALL. I thought that having some mean side effects actually meant that the drug was revving up the immune system. thanks much

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