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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triciad's picture
Replies 8
Last reply 8/10/2011 - 5:53pm

Hi All,

I just got a copy of my path report from my surgery from 7/20.  It says "the mitotic index is 2-5 mitoses/high powered field (20x).  There is extensive tumor necrosis."

I would greatly appreciate it if anyone could translate this for me.  Please tell it to me straight.

Thanks!

Tricia

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Are you living with melanoma? News from yesterday suggests that the FDA’s decision on investigational drug vemurafenib (Zelboraf) may come as early as this week or next.  The Melanoma Research Foundation may receive requests from newspaper or television reporters to speak with patients who have either been on the treatment or whose treatment decisions might be affected by the FDA’s decision.  If you have taken this drug or may consider this treatment if it comes to market, and you are willing to share your story, please take a moment to fill out the following survey: http://www.surveymonkey.com/s/V92M8SX.

Many thanks!

Shelby - MRF

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Eileen L's picture
Replies 8
Last reply 8/10/2011 - 2:41pm

Hi folks. I haven't been on the bulletin board very much over the last six months, use to come here quite often when I was first diagnosed Stage IV, which will be four years ago in September! Just had my six month scans last week and my two remaining tumors remain essentially stable. So another six months before my next set of scans. Yahoo!!!

For those of you  who don't know me, I was one of the very fortunate few folks who responded to an early BRAF inhibitor, Nexavar, which is also an anti-angiogenic. Have been on the medication for almost four years now. This drug is no longer used for Melanoma patients since it failed its Phase III trial for mel, but since it is still used for other cancers is available.

Although I don't come to this board much anymore, I am filled with gratitude for all the support I received here when I was first diagnosed. This is an awesome community!

Eileen L

 

 

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aynw's picture
Replies 3
Last reply 8/10/2011 - 2:33pm

I have done a number of searches and have been unable to find any others who have encountered this, but am sure there are.  If so - I'd like to hear from you. 

I started the high dose interferon June 22.  First week labs showed elevated liver function and low neutraphils - both outside of the acceptable range, so oncologist put me on a 1 week break and reduced the dose by half.  I was put on 1 week breaks after 2nd week and 3rd week, again because my neutraphils were too low.  Throughout, I was generally feeling fairly well, considering some of the side effects others have reported.  When I went in to see the oncologist last week he advised that he is terminating the interferon treatment as he doesn't feel it is safe, and that I will get into trouble very quickly once I start the injections.  I was surprised and disappointed...I know many don't complete the year, but I hadn't heard of anyone who wasn't able to get through at least the high dose round.  Has anyone else encountered this?  Are there any other options for me other than wait and watch?

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AZ_Gal's picture
Replies 2
Last reply 8/10/2011 - 1:55pm
Replies by: MichaelFL, lhaley

Everything came back clear!!! So for now I am NED!!!! YAY!

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awg's picture
Replies 9
Last reply 8/10/2011 - 12:29pm

I am in my last week of Interferon infusions. The side effects have been very mild (in my case) and I am very thankful for that. The one thing I have noticed is that food taste horrible and nothing tastes the same.

 

Will my taste return once I transition to the 3 shots weekly or is the change to my taste buds here to stay?

I am also interested to see how many of you completed the IV Infusions and decided not to continue with the 3 weekly shots? What made you make this decision?

 

Thanks,

 

Allen

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TracyLee's picture
Replies 3
Last reply 8/10/2011 - 12:17pm

Hi y'all,

First, my deepest sympathy to those who are in such pain over the loss of their loved ones. I lift each of you in my prayers.

I was admitted through the ER last Monday, stayed until Wednesday. Had to have two lung drains, just to get to a stable point until I went to Philly.

I was joking with my family, in the past week, I've had 3 thoracentesis (drain my lungs), 5 chest x-rays, CAT scans of chest and abdomen. Honestly now! And I still had to go BACK to the ER for yet another thoracentesis this past Sunday.

I went to Philly yesterday, and left with BRAF meds in hand. While I was not impressed AT ALL with my original consult up there, yesterday was a very pleasant encounter.  So, my hat is off to the U of Penn staff, and Dr. Schuchter.

Per Dr. Schuchter, since I just completed ipi, and am now doing BRAF, I have a very good shot at a positive response. I'm sure many of the more knowledgeable board posters are well aware of this, but I was not and was happy to hear it!

Praying for those of us in treatments, lifting those who are suffering.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Replies by: triciad

There has been some talk on the board recently concerning alternative medicines, herbs, dietary supplements, botanicals and other products etc., so I just wanted to post a few websites I have used over the years. If one has time, both websites are good reading. One will also find other areas of interest as well.

American Cancer Society:

Dietary Supplements: How to Know What Is Safe

http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/DietarySupplements/dietary-supplements-advertising

Also from ACS: Complementary and Alternative Medicine:

http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/index

Memorial Sloan Kettering:

Herbs, Botanicals & Other Products

This provides a alphabetical or search evidence-based listing of information about herbs, botanicals, supplements, and more.

http://www.mskcc.org/mskcc/html/11570.cfm

Michael

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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KellieSue's picture
Replies 2
Last reply 8/10/2011 - 9:22am
Replies by: triciad, MichaelFL

Could be sooner rather than later.

http://www.reuters.com/article/2011/08/09/us-roche-melanoma-idUSTRE7783NK20110809

 

Kellie(from Iowa) STage IV

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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MariaH's picture
Replies 7
Last reply 8/10/2011 - 7:37am

Dave was scheduled to start IL-2 on Monday, the 15th.  He went to our local hospital after having a "tightness" in his chest and they did a CT scan.  The scan showed significant growth in his lymph nodes in his chest, now pressing on a major vessel.  They called today and are scheduling him to start radiation prior to IL-2 (they worry that the swelling during IL-2 may cause the vessel to be compromised).  IL-2 has been postponed until the 22nd now.  I'm not sure what type of radiation they are doing, as they mentioned maybe 1-2 sessions of high dose.

I hate this damn disease, and my frustration level is through the roof right now...

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trishahimm's picture
Replies 13
Last reply 8/10/2011 - 4:21am

I am new to this, and my post might end up a little long, but please, any information will help.

My 59 year old father was diagnosed with a large malignant melanoma on the ball of his foot in May. It had been growing there for months before he finally had it tested. His GP told him it looked like he stepped on something and to put neosporin on it in August last year. Instead of going back after a few weeks when it didn't go away, he just put Neosporin on it everyday for months as it continued to grow larger. I knew nothing about this until May when he was diagnosed. A month ago, he had the tumor removed and plastic surgery to hopefully keep the foot usable. Before the surgery, the surgeon was very bleak about my dad's prospects, saying that it was a particularly rare type of melanoma and to basically start to think about how he wants to be cared for at the end. We were all panicked, but then the PET scan was clear, so we were then very excited that it was just in his foot. They removed 5 LN during the surgery from his groin area, we thought just as a precaution since the PET scan was clear. I didn't know until later that the PET scan doesn't show cancer in the LNs. A week later after we were all celebrating his good luck, we got the news that 4 of the 5 LN had cancer and that he needed another surgery to get the rest of the LN in his groin and thigh area, and then he would need immunotherapy. This next procedure was postponed several weeks due to the extensive wound on his foot.  Finally on Friday, they did a radical lymphadenectomy. We also found out Friday that the 4 cancerous LN they already took out were black. The dr said she removed extensive tissue from mid thigh up into his abdomen. There were several additional black LN found, one of them "deep in his abdomen" and that she took out as much as she possible could with this surgery. She said they have decided they will now do radiation on that area before they start the immunotherapy. She told my mom that they will do all they can, but that they found this very late, and that we are "behind the 8 ball now". My mom just blows her off and calls her "Negative Nancy" all the time and doesn't seem to want to hear any of it. She is of no help at this point in the discussion.

I have read so many positive posts of you all living years with melanoma or even cancer free, but the Dr told my mom if we look online, that we cannot compare, as his melanoma is different than what we will see on the melanoma sites. What does that mean? What info can I give you that might help me find others that have this "rare" melanoma? I have the pathology report from his biopsy that has some info on it that I tried to look up last month, but what denotes that it is a rare kind? Also, what stage is he? 3C? or since they found all the other nodes does that mean he is stage 4? I am confused. Any information will be appreciated, I want to understand what we are up against and what questions to ask the oncologist this week. My dad has practically given up already.

Trisha in CA

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/9/2011 - 9:22pm
Replies by: Angela C, Anonymous, Terra, Tim--MRF

Hello.

I am a Stage IV patient and just had a brain MRI this week and the results say, "There is a minimal punctate focus of enhancement along the high anterior right frontal lobe. This measures 2 to 3 mm in maximal size and is on the cortical surface. This is a new finding when compared with the previous exams and is suspicious for a tiny metastatic lesion."

I've never had any mets to the brain before. So, is there a possibility this could be something other than melanoma? I'd love to think that is the case, but I don't want to be unrealistic. A Stage IV Melanoma patient having something show up in the brain is a big red flag. This is very tiny. So, will they just assume it is melanoma or do they ever attempt a biopsy?

If this is melanoma, how will they most likely treat it? Am I looking at Gamma Knife? This is outside of my field of experience with melanoma so far and I'm trying really hard not to freak out right now. I won't see the doctor until next week  to discuss what he thinks needs to be done.

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

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Lisa13's picture
Replies 2
Last reply 8/9/2011 - 8:38pm
Replies by: Nan in Nebraska, Rocco

Since ending dacarbazine a month ago, I started going back into my vitamin and supplement program. Mainly I focus on high does of Vitamin C, Vitamin D and a Potent Multi Vitamin and some green tea extract.

Tomorrow I start ipi and assume I won't be able to take any of these supplements during the trial - is this true or have others taken vitamins while on ipi? Gene S - you had mentioned back in June taking high dose Vitamin D and even red wine :) Was this okay with your oncologist or did you go against his suggestion? Can you enjoy a glass of wine on ipi? 

Lisa - Stage 4

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

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Lisa13's picture
Replies 1
Last reply 8/9/2011 - 7:42pm
Replies by: MichaelFL

There is alot of talk about this new vaccine that is showing promise in clinical trials. That being said, is it only for BRAF positive people and can it be used after ipi? 

Lisa

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

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I spent the past few days at the NC Mutual Drug Show and sat in on my husband's CE seminar. The topic was treating vascular disease with compression and the presenter owns the pharmacy this link is for. His store is in Texas and he's the pharmacist there...educated as a pharmacist and "certified in Phytomedicinals (plant-based medicines) and Alternative Medicine by A.N.M.P." He practices an integrative pharmacy and is innovative in that.

All that to say that I learned quite a lot just from what he said about what he's seen work in herbals and alternative meds. Being a pharmacist, he also knows what to avoid, how things mix, etc.

His store:   http://fmherbalrx.net/    Flower Mound Herbal  Pharmacy in Flower Mound, Texas. He plans to expand what he offers about this topic in the next few months; right now, not too much is there, BUT, I pass this along because he is qualified to discuss this and invites contact and questions...contact info on website. So many on here have questions about this and are trying things, I want you to be as safe as possible and would suggest contacting Dennis Song at this store.

A couple of things interesting: he did stress talking with your pharmacist about any supplements to check for interactions. Getting people's opinions about these things may not be the best step, you need to know about possible interactions.

Since we have to be concerned about our immune systems, I took note when he said elderberries are really good for boosting it and for lowering blood sugar.

He also gave the 4 supplement brands he sells: Metagetics, Life Extension, Ortho Molecular, and Xymogen.

If you're experiencing vascular problems try: grape seed extract, Butchers Broom, Horse Chestnut Seed Extract, Blueberries, Red Wine, Elderberries, Sweet Clover, Pycnogenol. Discuss low level compression with your dr.

And, a final tip: don't read the front label of bottles, read the back label...that's where you'll find the nutritional content.

I'll be the first to admit, I considered this stuff equal to quackery before hearing him and talking with him after the seminar and learning his credentials. I learned to be more open, but only to what someone, like him, says. I feel he's qualified. He backs up what he does with studies and what he's seen work through the years. I actually invited him to come on here sometime because this is discussed and questioned sometimes.

If folks are going to go this route, I want you to be as safe as possible, there's so much junk out there that preys on our fears. Hope this helps.

Grace and peace,

Carol

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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