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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Anonymous's picture
Anonymous
Replies 3
Last reply 5/15/2013 - 3:14pm
Replies by: Anonymous, Cindy VT

HI-

I visit this site often and post every now and then but I really have respect and admiration for everyone on here. This is the first place I turn to. I'm posting anonomously due to the embarrassing nature. In the last week or two my bowel movements have been unusual. I say that as everything moves normal, there is no blood and I have been frequent. Anyway, I have noticed a groove or indentation in my stool sometimes. It doesn't happen all the time but it sure has me freaked out a bit. I did the obvious internet searches and come up with nothing concise. In most cases it says it can be an inflammed hemorroid or constipation. It has also mentioned poyps. I'm still a few years away from 50 but I know that doesn't remove the risk. So it had me thinking...can this be a metaststic tumor from melanoma that has settled in my colon. I had my scan about 2 months ago and was all clear. I have now been NED for over 2 years. I was never staged as I had no primary leison found...only a small bump under skin and no lymph node involvement. Anyone out there have any explanation or experience with something like this? I know I should probably see a GI or at the very least go see my primary doc but I wanted to reach out here first.

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Anonymous
Replies 0

As some of you know, my husband was recently diagnosed with Melanoma. It was .54mm, mitotic rate of 3 and the dermatologist staged it at T1B. We went to MD Anderson last week and he had a wide excision and some lymphnodes removed for biopsy. We are waiting about 10 days on the result of that. In the mean time, we did get a copy of the original pathology and his blood work. The pathology staged him at a Clark's level IV. My questions are about the blood work as all of these are new words to me.

If you can give me some laymans terms on what these may/may not mean and if they are typically abnormal in melanoma, I would really appreciate it.

Thanks in advance.

 

High: MEAN CORPUSCULAR HGB   

Low: NEUTROPHIL PERCENT    

High: EOSINOPHIL PERCENT 

High: LYMPHOCYTE PERCENT   

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Linny's picture
Replies 1
Last reply 5/15/2013 - 11:43am
Replies by: BrianP

I've been trying to follow news on this vaccine because I'm in the trial for it. It seems like good news for the vaccine may be forthcoming soon. So let's keep our fingers crossed that the Phase III trial data is as pivotal as they hope it will be. If it is, it'll be great for those with Stage III resectable melanoma who are MAGE-A3 positive. If I remember correclty from the literature I got at the beginning of the trial, about 65% of melanomas test positive for MAGE-A3.


http://oncology.healthace.com/011413/oncology_report_011413_s1.pdf

GlaxoSmithKline: MAGE-A3 (Phase III/NSCLC & Melanoma)

Success Could Open Up a New Platform; 40% Probability of Success with Global Sales Estimate of £1.2B in 2018

GlaxoSmithKline (GSK) could be a beneficiary in an emerging area which utilizes the understanding of cancer as an immune disease. GSK’s candidate is MAGE - A3, an antigen-specific cancer immunotherapy (ASCI), which has shown interesting phase II data. Pivotal phase III data in NSCLC and melanoma are expected in 2013. We see 5%-10% GSK NPV upside on positive data, and minimal downside on negative data given consensus expectations.

We expect pivotal phase III data for MAGE-A3 in mid-2013. This applies to MAGRIT (NSCLC) and DERMA (melanoma) studies, which are both event-driven. As the MAGE-A3 antigen is not expressed in normal cells in the body, the MAGE-A3 ASCI only targets cancer cells. The MAGE-A3 ASCI is highly specific for its antigen, and as a result the product has low potential to harm noncancerous tissues that lack the antigen. The minimal side-effects and good tolerability seen in the clinical trial program of MAGE-A3 (and other cancer immunotherapies) are particularly encouraging when compared to chemotherapy which often has toxic, poison-like side-effects (nausea, vomiting, hair loss, bone marrow depletion, etc.). MAGE-A3 therefore has potential not just as a product but also as a platform, as proving utility in adjuvant NSCLC or melanoma might open the road for GSK to treating perhaps dozens of cancer types with vaccines.

While we acknowledge that cancer vaccines are currently a high-risk area of development, reflected in our 40% modeled probability of success and £1.2bn 2018 global sales estimate, we see several reasons for optimism in the product: (1) phase II studies showed strong trends to MAGE-A3 improvements on survival (DFS, OS); (2) all MAGE-A3 trials so far show impressive safety; (3) phase III studies have much more power to show statistical benefits than the phase II studies; (4) GSK has used gene profiling information to potentially identify responders; and (5) GSK has used more powerful adjuvants (immune boosters) which produce higher-quality results in its phase III trials.

For now, the potential and the risks are high for MAGE-A3 (and the business division that could emerge at GSK if the product works). Consensus does not model MAGE-A3 generally, so we see little scope for downside.

Stage III, Unknown Primary; 1 positive node in left axilla

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In 2006 when I was stage IIIB melanoma, I had several surgeries including in my brain, and I did interferon high dose for a week.  In 2005 I had a hysterectomy.  I was put on estradiaol. 

My Oncologist put me on another drug called Megestrol, or Megace.  I thought It was suppose to take care of hot flashes,

but apparently this drug stops tumors from growing, mostly in Breast Cancer Patients, but I was given it and maybe my tumors are not growing because of this drug?

I think it would be something to ask about.  Maybe it works with melanoma patients too.

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Janner's picture
Replies 1
Last reply 5/14/2013 - 10:24pm
Replies by: Hstevens0072

I got permission from Cigar Bob to post an update.  Dian is finally at home after hospitalization and rehab - back and forth.  She is recovering from a stroke she had as a side effect after IL-2.  She also had radiation on a benign tumor in her back that was causing a lot of pain.  She still has some pain issues and lingering effects from the stroke and the computer is not something she's up to dealing with yet.  Hopefully she'll be back on here after a little more time passes and she has a chance to heal.  Wishing her speedy healing!

http://www.MelanomaResources.info

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Anonymous's picture
Replies 3
Last reply 5/14/2013 - 8:29pm

I havebeen on Zelboraf for 4 weeks.   My doctor started me on 3 & 3.  Reduced to 2 & 2.  Now  2 & 3 but through all my scalp, especially upper neck has itched very much.  Any suggestins?

Phil 4:13 and also "It is what it is"

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mama1960's picture
Replies 2
Last reply 5/14/2013 - 6:41pm
Replies by: mama1960, NYKaren

Had first treatment today. Nausea not listed as a side effect. I've been throwing up since 20 minutes after I left treatment center. Anyone else have this happen to them?

It is what it is.

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nickmac56's picture
Replies 12
Last reply 5/14/2013 - 6:21pm

I am of a mind that alternative treatments as varied as coffee enemas, high dose Vitamin C, turkey trot mushrooms, clinics in Mexico are bunk and a way of nefarious people preying on the fears of people with serious diseases with the objective of extracting their money. 

My wife has very advanced melanoma - at this point it is at  the deadly disease stage with the dying part not that far off. Conventional therapies have failed, as have the new wonder drugs (Yervoy). She could go through a few more very tough chemo/biological regimens, but the evidence on their success is miniscule - naybe eke out a few more months but at a hihgly copromised quality of life. Especially if she has to treat more brain mets and lose more brain function.

So her therapist suggested she look at this alternative treatment - indicated in the subject line. I haven't found anything on this board that has looked at him or his theory and found compelling evidence to stay away, as I have had with researching  other suggestions from well meaning friends.

Anyone know about this, and care to offer facts or an informed opinion based on their research? I am not interested (for the sake of all of us) in rekindling the entire alternative medical approach debate. I am just interested in this one approach and this one clinic and if anyone knows of anyplace or information nexus where I can find anything about them which has a shred of evidenced based outcomes.

thanks, Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Anonymous's picture
Replies 6
Last reply 5/14/2013 - 5:51pm
Replies by: Anonymous, Janner, Phil S

I don't get how a person would know to even ask to get tested for a cancer gene?

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Sandy11's picture
Replies 7
Last reply 5/14/2013 - 3:32pm

Any recent experience with Chemo?  My husband completed IPI treatments in December.  IPI was awesome against the lung mets, but hasn't touched other tumors.  He also is among the not so lucky 2% that came away with Adrenal gland issues.  (Currently controlled with hydrocortisone)  He is not symptomatic and no mets in vital organs... that's the good news and he's still positive and fighting the fight.  He ws negative for the BRAF gene, so the doc says the next treatment option would be chemo.  We know that doesn't have the best track record against melanoma, but anyone have experience to share?  Nothing happening right now as my husband is feeling pretty well and plans on enjoying the summer. 

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THP's picture
Replies 5
Last reply 5/14/2013 - 1:19pm
Replies by: Anonymous, kylez, thrashter, THP

My husband will begin biochmotherapy for the first time next week.  I would love to hear feedback from anyone that has been through this.  What to expect, any tips or advice on the best way to get through this with the least amount of side effects.  We are not looking forward to this AT ALL!  Any help would be appreciated!

Thanks!

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Anonymous's picture
Replies 4
Last reply 5/14/2013 - 1:13pm
Replies by: Anonymous, Janner, POW

Had the original biopsy, full excision, wide excision with 'margins' is scheduled for the end of this month.....It was on the rim of my ear...that skin is so thin anyway, (and not much left since they keep cutting and stretching!)  is there a chance it could have gotten into my cartilage?.... also, they havent mentioned SLNB... should I ask? It is diagnosed at level 2 stage t1A, but they dont have details like exact thickness, or mitotic rate, which I understand are important factors... My doc is only an ear/nose/throat doc upstairs from my primary physician, and he hasnt refered me elsewhere, even with this upcoming surgery with margins... He insists on doing it... I dont want to question his knowledge, but I am worried that he's either not going to get all of it this time either, OR that it has already spread to nodes in my neck (one of my nodes was swollen, he felt it, said it wasnt swollen ENOUGH to be worried.. I dont know what to do :( :( :(

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buckytom's picture
Replies 5
Last reply 5/14/2013 - 12:23pm

Working through my doc at Mayo I started the 14 day on/14 day off Leukine treatment on April 23 - last of the first round treatments was on May 6. Did not have any side effects the first week - started to feel it second week - but the worst was the week AFTER i was done with treatments, still feeling very fatiged/achy/headache yet today - 6 days after my last treatment. Does anyone have any experience where their side effects came after their last treatment? Just trying to gauge when I can expect to feel a little better - and what the next round of treatment might be like.

Any help would be appreciated!

Tom

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JoWen's picture
Replies 7
Last reply 5/14/2013 - 8:51am

Hello....I am new to the bulletin board and have been reading through posted topics, not knowing exactly where or how to begin, Knowing that much detailed information is needed, I hope I have included all that's important.  We are at a point of not knowing which of the options given are the right to choose....any info would be greatly appreciated.

 Approximately 6 weeks ago, my fiance (age 63) had a "mole" removed from his neck, just above the shoulder line.  Phone call from PMD came and stated it was "malignant melanoma" Seen by general surgeon the following week and his affect just didn't sit well with me and immediately know a second option was going to be obtained.  Upon receiving the path report it stated the following:  Malignant Melanoma, Nodular, 2.5mm in thickness extending to the base of the biopsy with a separate portion of tissue showing a mm thick portion of melanoma.  Greater than 10 mitosis per millimeter squared. mm of ulceration. Melanoma seen in vascular spaces.  Clark level IV (deeper invasion cannot be excluded)  No perineural invasion.  Tumor infiltrating lymphocytes - non brisk.  cautery effect. incompletely excised.

Consulted with a melanoma surgical oncologist at the James Cancer-Research Institute @ OSU and surgery was scheduled two weeks later for a wide excision and sentinel node biopsy.  Day of the surgery, lymph node mapping performed and 2 sentinel nodes were removed.  Of the two, one showed metastatic malignant melanoma.  Of the five supraclavicular nodes, none showed evidence.  The path report also states that the largest focus of metastatic malignant melanoma measures approx 3mm in greatest dimension for the positive sentinel node.  Lesional cells are present in the lymph node parenchyma and capsular sinus.  No extracapsular extension is identified.   An incidental predominantly intradermal melanocytic nevus is present in the excised site. The positive node stained positive for Melan-A, HMB-45 and Tyrosinase.

The surgical oncologist set up an appointment with a medical oncologist for evaluation of systemic therapy options this Tuesday.  She gave two options...the first was completion of node dissection vs. MSLT2 participation.  She stated that a full body ct would be scheduled....pet scan is not done because she said these are microscopic cells and would not be picked up.  She also mentioned that with treatment option 1, the node dissection, the pharmacological treatment is interferon, which is not her choice because of the severe side effects.

We are trying to process and fully understand what lies ahead and what is the right decision moving forward.  I sincerely appreciate any information based on the results above.  

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abrowell's picture
Replies 4
Last reply 5/13/2013 - 9:28pm
Replies by: AllyNTAus, KnowThyself, Anonymous, Linny

hi all.  i am new to these boards as a user but have been reading them for the last few weeks--so helpful.  my husband had a mole removed from his bicep in march, was diagnosed with melanoma in early april.  the tumor was .8, with no ulceration and to trace of mytotic rate.  we were told the standard of care is to breathe a sigh of relief and do nothing. he's 45 with three kids (13, 12, 10).  it didn't like not knowing if the cancer had already spread, even though he was such a low risk for spread (something like 96% chance it had not spread).  i researched and found that at 40 years old and .75+ depth, SNB was starting to be recommended.  so we pushed and got it done.  unfortunately, two of four lymph nodes removed were cancerous (i don't know the details yet...macro/micro, etc.).  he just had a petscan on friday and will have lymphandectomy (sp?) on tuesday.  so this weekend and the last week has been awful and we are hoping for some good news.  i think he is stage iiia and we are hoping to stay there.

so here are several questions.  1) has anyone had such a "small" tumor that has spread to lymph nodes?  2) he feels perfectly fine, perfectly healthy, besides the surgical spots.  i'm guessing that from reading here that that means nothing and we'll find out soon enough whether it has spread to organs and other lymph nodes?  3) we are at stanford, and i feel very good about his surgeon.  he has only recommended petscan...should one get other scans or is this fine for now?  4) i know for the oncology portion that cal pacific and ucsf are highly recommended; has anyone stayed at stanford for the melanoma oncology (dr. reddy)?  5) finally, a good friend whose husband died of liver cancer recommended a doctor who runs a company called "good medicine."  you meet with this group (multiple doctors, nurses and researchers), they review all your records, and they can help recommend where you might be treated, with whom, etc, based on your needs as a family and the doctors' expertise, your stage, etc.  they are not specific to cancer or melanoma.  has anyone used a group like this? 

thank you for any thoughts you have.

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