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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MattF's picture
Replies 4
Last reply 8/27/2012 - 1:06pm

On 16 July I had my shave biopsy of a 1cm wide, thickness unknown but atleast 1mm Malignant Melanoma from my chin at base of my ear.

I am waiting to get in to have Wide Excision and SLNB.

My question is could the Melanoma have grown back in at the shave site? I could have sworn it was clean the day or so after the Dermatologist shaved it off, but now i see little brown parts in and around the area.

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Is anybody currently doing the trial of Zelboraf and Yervoy combined?  If so, have you had positive results?

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Tina D's picture
Replies 9
Last reply 8/27/2012 - 3:45am

Hi all, I have been on Zelboraf for over 2 months, have had six different areas removed by my dermatologist, one turned out to be a squamous cell. These areas are easy to recognize as new and unusual. My question is this. The moles on my back are forming halos, and I know that to be an immune response... but the moles on my extremitiies are all getting darker. The dermatologist noted this yesterday, and was not completely sure what it meant. I am the only pt on Z for both my dermatologist, and my oncologist. I did call the Z hotline, and they are wonderful, but it really still came down to them saying that the dermatologist is the one to examine and make a judgement about them. My question is this. Has anyone had darkening moles? If so, did the Dr give any explanation as to whether this may be a negative indicator? Or what it may mean, or what should be done abt them? Thanks so much for any responses to this. I read on here regularly & take encouragement from many of the posts. My first set of scans since starting Z will be on the 6th of August. I'd be lying if I said I have no scanxiety abt these upcoming scans. I am doing my best to keep my eyes on the Lord, and my hope in Him alone.He is faithful regardless of my circumstances, and in the midst of them.

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MattF's picture
Replies 11
Last reply 8/26/2012 - 4:42pm

Ok diagnosed from pathology (shave biopsy) atleast 1mm right cheek.

Has not been excised.

Have appt with general oncologist tomorrow (24 Aug) after referral went from Derm through insurance.

I realized today that MD Anderson is only 3 hours away and is covered under my insurance (Active Duty Military Tricare) and my PCP agreed to put in a referral for MD Anderson Melanoma Skin Center. I called MDA and they said as long as they get a ref (insurance is verified) and medical record they can take new patients within 7 to 14 days.

Am I being nieve? is it that simple to get in there? Am I stupid for ever going down the general oncologist road?

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Charlie S's picture
Replies 24
Last reply 8/26/2012 - 4:15pm

25 years, a quarter of a century, two and a half decades, six years shy of half of my life, I have had melanoma( suffered from, my doc likes to tell his interns)  Stage III unknown primary in 1987, BIG surgery and then melanoma lay in wait nine years until  1996 when the diagnosis became Stage IV..  

Seven recurrences , fourteen surgeries, Well over two hundred infusions of different drugs, cumulative medical bills over the years surpassing three milllion dollars, one pharmacy bill alone of one hundred and eighty six THOUSAND dollars. Have had it seems, every complcation and side effect of surgery and treatment known to man. Hired doctors and fired more.  Married, divorced,, launched four startups, returned to college, made lots of money, lost lots money, my girlfriend took her last breath as she died in my arms due to complications of melanoma;; even was desperately close to being homeless.

I have made friends and lost friends, learned what love truly is and encountered enemies

And here I stand before you with the score at 25 for me melanoma.  Yes, you melanoma have won some battles and wounded me deeply to my core, but in the war that that has been before me  with you. the score is still Charlie 25/Melanoma Zero. and I am ahead.

Numerous times in the past I have encouraged you to give me your best shot and you certainly have, but the overall score is mine to own.

To others new and old, my story is not unique.  People do survive.  Yes the treatments and surgeries can be harsh, the decision to choose which one can be paralyzing.  And yes, sadly, some people do not survive.  Since none of us are getting out of here alive anyway; make your choices wisely.

There is no silver bullet I can say to any of you.  However I would urge people to try (hard as it may be) to make medical decisions based upon science and not emotion.  As an example,I read somewhere here that diet change alone would be better than interferon.  That statement is not supported by science, but is appealing for emotional reasons

Something else is the statistical numbers game.  Do not get caught up in it.   In 1987, there was not an AJCC a "chart" to show my odds; in 1996 there was and it was 2% five year survival for me.  Not.

 For all I know, and for all I have seen, at the very best , any treatment for advanced melanoma is 20% success.  That is our lot.  

I do know however many people where surgery alone did it and they are alive, same with chemo, same with bio-chem, same with interferon, same with GMCSF, same with IL2, same with yervoy, same with Zelboraf, same with AVastin.  I also know an equal amount of people that no matter what treatment, died.

Yes, clinical trials are scientific experiments that use human beings as test subjects; but without participation, no new treatments will become available.

For me, I have been lucky that melanoma has became a disease of management; not easy mind you, but it IS possible.

For all of you, please know that it is possible.

Cheers,

Charlie S

 

 

 

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Carol Taylor's picture
Replies 10
Last reply 8/26/2012 - 3:00am

There's been much recent discussion and mention of using aloe vera, herbals, and other natural products. My daughter, Jessica, has her PharmD and is a licensed, practicing pharmacist. The other night I asked her about the use of aloe vera in treating cancer and we had the most interesting discussion and I learned A LOT! (Love to see my tuition dollars at work!) I asked her to write down what we discussed and email it to me so I could pass it along to you. Whether you take any natural products or not, you may find this very interesting and educational.

I'm not trying to dissuade anyone from doing what you're doing, but I am trying to pass along relevent info that may be useful in making decisions that you can live with and help you live. It took her two emails to get everything in that she wanted to say, so I put them together and here it is:

"Aloe vera and other herbals or natural products are not FDA approved.  This means that the company that manufactures the product does not have to do clinical trials or provide any evidence to support the claims that are made on the label.  The manufacturer also does not have to prove that the list of ingredients on the label is actually what is in the product.  Therefore, there is really no way to know what is in the product you are buying or how much of an ingredient is really in the product.  In other words, 100% aloe vera juice really does not have to be 100% aloe vera juice and there is no way to know if it is or is not.  A product can also claim to cure anything, and there will be tons of websites online that will claim that it can cure anything, but in reality there is usually very little data, if any at all, to support the claims.  With prescription and over-the-counter medications, it is up to the company to submit clinical trials to prove to the FDA that the product is safe and effective, is what it says it is, does what the company claims it does, etc.  With natural products, the burden is on the FDA to prove that the product is harmful and pull it off the market.  Also, don't assume because it is "natural" it is safe and has no side effects or drug interactions.  Cyanide is natural.  Everything has properties that will act in the body in some way and possibly cause side effects or possibly even be harmful.  There are hundreds of drugs with different properties and actions in the body, so it is entirely possible that a natural product could interact with something.  However, some natural products like fish oil and niacin have been researched and are widely accepted, used and prescribed regularly by physicians, and are included in medical treatment guidelines.  The safest thing to do is ask your doctor or pharmacist before using any herbal or natural product.
  Next, I have done some research into legitimate data regarding benefits of aloe vera in cancer and risks, side effects, drug interactions, etc.  I found that in 2002, the FDA pulled OTC laxatives that contained aloe due to lack of safety data.  I also found that high doses of aloe vera can be harmful and case reports of hepatitis have been reported.  Case reports are rare instances of something happening, so they are not enough to say high oral doses of aloe cause hepatitis, but they are hints that there may be a problem and that studies need to be done to further investigate.  The NCCAM, which is the go-to website for legitimate up-to-date herbal information, stated that a two-year study of orally consumed aloe in rats actually showed carcinogenic activity.  This cannot be applied to humans, but it shows there could be a problem with aloe ingestion.  MayoClinic stated that aloe may reduce the risk of lung cancer, but ingestion for over a year could increase the risk of colorectal cancer.  There is little data, which is conflicting, but there are risks of ingesting large oral doses of aloe vera.  Further studies need to be done and I did not find any data to support aloe for melanoma treatment, so the risks aren't worth the possible benefits.  Now there are tons of unreputable websites that speak highly of aloe's healing power, those may be what they are seeing.  Here are the websites I found;

  http://nccam.nih.gov/health/aloevera/

http://www.webmd.com/vitamins-and-supplements/lifestyle-guide-11/supplement-guide-aloe-vera

http://www.mayoclinic.com/health/aloe-vera/NS_patient-aloe/DSECTION=safety

Feel free to pass the websites along and you may want to suggest Melanoma Prayer Center users look up natural product information at one of these places and ask their doctors or pharmacists before using anything.

Jessica sent this as a brief follow-up email; “I mentioned about aloe being a laxative.  Because of this it can cause electrolyte imbalances.  I meant to mention this but if you look at the websites you will see it.”

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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AllyNTAus's picture
Replies 5
Last reply 8/25/2012 - 7:21pm

Hi everyone,

I was just wondering what others taking either the GSK or Roche BRAF inhibitor are finding in relation to hair loss - I am in week 14 of taking Dabrafenib, and in the last couple of weeks I have really started shedding a lot of hair, luckily I started with very thick hair but I am wondering where this might end up. Talking with a friend yesterday, she suggested that if I had some idea I was going to have complete or near complete hair loss I could start getting a wig made now, I hadn't thought about that.

I know this might seem like a pretty superficical concern in the context of what everyone here is going through, but if you have any experiences you are prepared to share I would be grateful.

Best wishes to everyone

Ally

A bad day's fishing beats a good day's work everytime

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GaylaB's picture
Replies 19
Last reply 8/25/2012 - 9:02am

I was diagnosed on 7-12-12

Had WLE and SNB on 8-1-12 at Emory, just got path report today which is SO confusing.

Clinical stage is IIA, T3, N0

However due to the 2nd node shows scattered subcapsular immunopositive cells and immunistains for S100 are negative there was a comment attached that stated "Multiple recuts and melan-A immunostains do not resolve the issue of whether the immunopositve cells in part B represent metastic melanoma or nevus, metastatic tumor cannot be excluded.

2 pathologists came to the same assessment

This additional information made my surgeon restage my cancer to stage III and has scheduled PET and complete lymph node removal of the groin (20 nodes) on August 29.

Only 2 nodes were removed at SNB.

Margins of WLE are clear and although we thought we had GOOD news with the stage IIA, after she changed it to III we became extremely distraught.

Any info you can give would be appreciated!

God still performs Miracles,

Gayla

Never give up- God is my healer

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Snickers60's picture
Replies 4
Last reply 8/25/2012 - 2:01am
Replies by: Amanda, Anonymous, awillett1991, Charlie S

Have you all heard anything about this ???    I Just wrote about it in my HOME FROM MDA post,  but wanted to bring special attention to it, as Dr. B. toldus again that it will be available by Oct. - Nov. of this year !     It's for people who are completely NED !    Supposedly, it prevents it rather than havingto take chemo/Zel - other kinds of treatment,  forever !   

He will be back at a meeting in late Sept. 2012 for an update of the release date.   We cannot find anything about it on the net.  Would that be fantastic or WHAT !!!   :-)

YA'LL HEARD ANYTHING ABOUT IT FROM YOUR DOC ?

 

Nancy (devoted wife of 3 X Warrior Wayne) 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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triciad's picture
Replies 8
Last reply 8/25/2012 - 12:45am
Replies by: Amanda, lhaley, Anonymous, Randy437, Laurie from maine, triciad

Hi Everyone,

I have a friend with brain mets.  Does anyone know which drugs cross the blood-brain barrier?

Thanks so much for your help and keep up the fight!

Tricia

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Hi Kevin,

 

I have not been on the board for a few weeks and trying to catch up.

Have  you finished your WBR...any side effects?? I hope you are doing well.

You are such a strong young man. I pray you & Brenda have a life time of health that takes you on  wonderful adventures.

God Bless You.

Kayla

 

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rrrule32's picture
Replies 6
Last reply 8/23/2012 - 9:26pm

Has anybody here taken Zelboraf, stopped because of side effects, and restart the Zelboraf and have it not work?

My fiance is stopping Zelboraf for a small amount of time in order to let her nausea pass.  The Zelboraf has been working.  A part of me is worried that when she goes back on that it all of a sudden won't work.

Anyone have this issue?

Thank you,

Travis

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himynameiskevin's picture
Replies 23
Last reply 8/23/2012 - 3:58pm

It's been a ride.

I know Brenda updated my status for me as I was down and out, and kind of remember her reading your replies from my bedside in the hospital room. Thank you all for staying by my side during the must unfortunate and of difficult times.

A quick recap: MRI on July 23rd and "detailed" MRI on Aug 3rd showed more tumors in my brain. 3? 12? I didn't want to know, I was told that they were 1cm or lower and WBR would be the next best thing as have already SRSed 10 in February, it didn't seem like a race to win.

PETscan on the 6th showed more progression and less progression in certain parts of lungs, but the bad outweighed the good. Affirming Zelboraf has run it's course, for now. Also a node, in my right groin is swelling again, same one, same spot as in February. Other than all those. That's it.

For a week or so before the second MRI I hadn't had much of an appetite and had a bit of anxiety, losing  weight, and not feeling too hot. Dizziness and fatigue. On the 6th, the day of the PETscan, things got rough, no appetite, started throwing up everything that went past my throat and real bad headaches. Around 3am of Tues I went to the ER, vitals ok, since I had just got scans, they stabilized me, they got me on steroids for swelling, a prescription sleep aide and some and nausea stuff.

12 hours later, after no help from these meds, Brenda called my docs, and they told me to come in right away to be admitted. By this time, I couldn't walk at all, complete vertigo. I've never had a drink or been intoxicated in my life, but it was probably like that. Slow steps with Brenda's shoulders and crawling to her car. And that was that, on our way I was a little scared but happy nonetheless. Looking forward to being under professional care. A lot of care was put toward me. Checked in, nurses and everyone were so great. My room was real nice and cozy. My mom flew out from NC, and took care of me like only a mother can. Stayed in my room and made my time there tolerable, and helped me get a little better day by day. She has to go home in a few hours though. :/ At least she was able to see me mend.

When I went in I was 122lbs, low for my usual 129 10yr avg. I was on stretchers and hover mats for days. I only threw up twice, once right when I arrived, and once on the first trip to WBR. I blame anxiety. They started WBR a week ago today, will continue everyday, until the end of next week I think. By Friday of last week I was wheel chairing it. And Saturday, a few walks outside with a walker. By Sunday they had me off all IV's/fluids. Labs are stable and I was able to walk, kind of like new born Bambi. But now, Wednesday, not too bad, calves still a little weak and crampy, so I take it slow, but hopefully be back to normal sooner than later. The steroids definitely helping my appetite, back up to 128 and keeping everything down, no problem. Not sure how swollen my face will get this time, but I'd sure prefer a swollen face over a swollen brain.

Future plan is still the same: just see if I can obtain some stability in my brain, knock these things out the best I can. Should be starting Temodar very soon, waiting on calls/approvals today, (did a low dose for a few days in the hospital) went alright. If I can buy some time, maybe a Temodar/Zelboraf combo? If I can get off the steroid, maybe IL-2 again? If something gets approved, maybe a compassionate use trial?

We'll see. For now I'm just going to try and feel better today than yesterday and see what happens. Try to keep doing that. Because somehow I'm still here, I should savor this gift. 

Thanks for reading, I'll keep you updated best I can.
Genuine love to my Brenda, my mom, and to all of you for sticking by my side, encouraging, hoping and and sharing stories of good health during these rough times.

To our futures. -Kevin

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rrrule32's picture
Replies 8
Last reply 8/23/2012 - 9:34am

Hello,

Does anyone know if the following supplements can effect the way Zelboraf works?  My fiance is on Zelboraf, but I also just started her on a whole bunch of supplements.  Here is the list of some of the ones I'm curious about:

Resveratrol

Turmeric

Quercetin

Aged Garlic Extract

Eugenol (Cloves)

Fenugreek

 

Thank you for any info you might have.

Travis

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JerryfromFauq's picture
Replies 1
Last reply 8/23/2012 - 9:02am
Replies by: walesgirl

 The management of in-transit metastases is challenging, since the treatments and extent of disease vary greatly based on the number, depth, location, and distribution of lesions, and on their biological behavior. A number of different treatment options exist, but there is no level 1 evidence to guide clinical decision-making. Herein we present our institutional treatment algorithm, which allows for individualization based on the patient's presentation.

 

In-Transit Melanoma: An Individualized Approach

 
By Travis E. Grotz, MD1, Aaron S. Mansfield, MD2,3, Lisa A. Kottschade, CNP2,3, Lori A. Erickson, MD4, Lori A. Erickson, MD5, Svetomir N. Markovic, MD, PhD2,3, James W. Jakub, MD1 | December 30, 2011

I'm me, not a statistic. Praying to not be one for years yet.

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