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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Brettuss's picture
Replies 9
Last reply 8/11/2011 - 5:52am

 

My wife has what the dermatologist calls an "extremely high" number of atypical moles. Her father had melanoma, Stage III and is still alive and cancer free after 12 years. She went into the dermatologist on July 19th and they did a shave biopsy (I think) on the maximum number of moles they could do, five. Unfortunately, one of them came back positive for melanoma.

This scared the crap out of us. We have a 4 month old son. I can't imagine a future without her. She just became a nurse. We are finally hitting our stride. We are only in our late 20's.  This is insane.  Fortunately, the dermatologist thinks they got it all with the biopsy. Here are the official stats:

Depth of .75 mm, Clark's Level III, no ulceration, no mitotic evidence, margins clear.

They are going in on August 18th to take an extra 1 cm from around the site of the mole. If the tests there show no melanoma cells, and they have said they think it will, she will be given an 'all clear'. Based on the pathology results, there are no plans to do a sentinel node biopsy.

Is this news as good as we think it is? No melanoma would be better, but aside from in-situ, I think these results are pretty good - or am I grasping for something that isn't there? For those with experience, would you suggest pushing for a SNB even though it isn't officially recommended?

This was a huge wake up call to us. Her making her dermatology visit is also a direct result of the "Dear 16 Year Old Me" video, so THANK YOU to the people who posted that video. You probably saved her life.

Are there any of you who track your moles at home? What method do you use?

I want to make sure that we catch every last one of these bad moles right when/if they start.

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himynameiskevin's picture
Replies 14
Last reply 8/11/2011 - 1:29am

I realized not too long ago, that I haven't updated on here in some time. So here I am, there's not much to update on. Which in a way is good thing. I went back to the NIH about a month ago for my 6th follow up visit for monthly MRI and CT scans. The scans showed that there's still tumors all over my lungs and that they haven't really gotten any smaller from the previous month maybe a couple percent. If that. But the important thing is that nothing is growing, nothing new is showing and my brain is still clear. So of course, not the result we would all hope for. But good news and good result nonetheless. They've decided to let me take a two month break this time. And they're going to stop MRIing my brain since that last 10 MRIs show that it's been clear since the one nodule I had eradicated last year with the streaotactic radiation. So I go back August 30th. I don't know what is going to happen, but again, I'll cross that bridge when I get there. 

By the way, last week, July 23rd, was exactly one year since my dermatologist gave me the life changing news of "metastatic melanoma". The feelings and thoughts were indescribable, and although I hoped, I didn't imagine being where I am right now. Some IL-2, a little radiation, a bit of surgery, and some adoptive cell therapy has me feeling as physically normal as I ever have. Doing all the same activities I did before, (biking, camping, skydiving, music, swimming, reading, eating, loving, laughing, living). Even though I've still got these undesirables in my lungs, I can't really feel them. I mean sometimes I'll get a random pain. But everyone gets random pain so I don't know.  But I'm doing good for the most part. I've done more "living" in the last 8 months then I have in the last.... ..years.  I just hope I can say the same next year. I figure, if I can make it one year, well then maybe I can make it another. And then maybe do that again. And possibly again. And again... Next thing you know I'm 80. Oh that'd be nice...
We'll see.

 

Well that's all I've got for now. I'll keep updating time to time.
To everyone I know, and those I don't, I hope you're doing well.
-Kevin

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Sisterofmine's picture
Replies 1
Last reply 8/11/2011 - 1:04am
Replies by: tricialeigh44

My sister (stage IV since may of 2010) completed all 3 rounds of IL2 and now after two CT scans we are now moving on to IPI.  I would like to hear from anyone that has had this course of treatment, and what the results were.

Thanks

My sister is not waiting for the storm to pass and is dancing in the rain. 

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gabsound's picture
Replies 4
Last reply 8/11/2011 - 12:34am

Hi,

I completed first round of biochemo with Temodar, IL2 and Interferon. It went as well as I think it could have. Symptoms were mostly nausea, some anxiety and a rash which showed up on my face, chest and abdomen. I had a reaction to the Ativan and wont be having that again. I was also given Thorazine  for persistent hiccups along with nausea. I won't have that one again either.

The rash peeled a bit on my face as well as my chest. Nothing happened on the abdominal area.

My question to those doing IL2-what happened with the rash for round 2? Did it come in the same places? Did it get worse?

I start round 2 on 8/24/11.

Julie in Las Vegas

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The amazing new gene therapy for leukemia that can be used for other cancers, hopefuly melanoma:

 

http://www.cbsnews.com/stories/2011/08/10/health/main20090800.shtml 

CBS Evening News August 10, 2011

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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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Brief recap - I had a full, left lymph node dissection in June after reoccurence noted in May, 2011. Primary site was lower, left back in 2006. Initial PET/CT showed highlighted area to muscle in upper left thigh at same time as node detection. Removal of nodes showed 4 of 11 to be positive. Due to area in upper left thigh being positive, I was told I was Stage IV, resected. Within one week of surgery site was infected and I have since been medically packing the area. During this time I have gone for additional opinions.

I have traveled to Johns Hopkins and Sloan Kettering. My staging was noted to be Stage IIIb and Stage IIIc respectively. Johns Hopkins recommends Interferon since I would not be eligible for any trials at this time with no known, measurable disease. I am showing positive for BRAF. Sloan Kettering does not recommend Interferon nor do they use Interferon for any means of treatment at their Institution. Sloan Kettering feels there is not an added benefit with the use of Interferon, statistically, against reoccurrence coupled with the extreme side effects when taking this drug for the year. They would rather me not take Interferon and scan me every 3 months for the first year stating I have an 85% chance of relapse in the first year.

I would love to hear from those that elected to take Interferon and what assisted you in your decision process as well as  hear from those that didn't elect to take Interferon and why not.

Your feedback is much appreciated - I am fairly new to the board, since July, and truly feel the added benefit of being part of such a compassionate group of people, thank you.

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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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