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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lindas58's picture
Replies 5
Last reply 2/21/2011 - 11:34am
Replies by: MichaelFL, lindas58, Janner

My husband was diagnosed in Dec 2010 with a melanoma on his back. Has since been removed along with the sentinal nodes in his armpits. (they were clear).  I am very confused about his diagnosis & was hoping maybe you could answer some questions  for me. Initial pathology report was very brief, 0.42 Breslow depth,  clarks level lll, 1.6 x 1.1 cm with ulceration. We can't seem to get an answer on what stage this is or if we should be concerrned at all. The drs feel there should be no re-occurance. I am beside myself with worry it will show up elsewhere. The oncologist did tell him a few things to watch for but I feel this isn't enough. Am I just a worry wort?

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lindas58's picture
Replies 3
Last reply 2/24/2011 - 9:35pm

My husband was diagnosed in Dec 2010 with a melanoma on his back. Has since been removed along with the sentinal nodes in his armpits. (they were clear).  I am very confused about his diagnosis & was hoping maybe you could answer some questions  for me. Initial pathology report was very brief, 0.42 Breslow depth,  clarks level lll, 1.6 x 1.1 cm with ulceration. We can't seem to get an answer on what stage this is or if we should be concerrned at all. The drs feel there should be no re-occurance. I am beside myself with worry it will show up elsewhere. The oncologist did tell him a few things to watch for but I feel this isn't enough. Am I just a worry wort?

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Replies by: Janner

Here is an abstract from a recent study that finds that a fever can be beneficial when receiving treatment.

http://meeting.ascopubs.org/cgi/content/abstract/28/15_suppl/8569

It seems that a higher than normal temperature is a sign that the immune system is responding as it should. Could it therefore be that fever-reducing medication should be avoided if possible?

 

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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lslv's picture
Replies 3
Last reply 2/21/2011 - 7:59am
Replies by: Vermont_Donna, lslv

hello, i was diagnosed with stage 3c melanoma and had 42 lymhnodes removed from my neck in november and two were positive.  i am currently NED.  i started ipilimumab have had three treatments and have developed swollen lymphnodes in my neck starting 4 days after first treatment. they ae soft and movable and i had two needle biopsied and it came back negative. i am curious anyone has expierienced the same or heard of it.  Iam still nervous about them.  thanks in advance.

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ValinMtl's picture
Replies 3
Last reply 2/24/2011 - 9:46am
Replies by: ValinMtl, Vermont_Donna

Hi Donna, I read your reply below and was wondering about the"solaris garment".."its thick and padded kind of like an oven mitt, that you slip your foot and leg into..it goes toes to groin".  Could you tell me where you were able to purchase it? 

I fly up from Florida for CT scan on Tuesday...stressful time.  Left groin is still swollen and the new sub-qs are still there although many of my other lesions have diminished....I'm praying hard.

Val

Live Laugh Love Nothing is worth more than this day!

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CLPrice31's picture
Replies 4
Last reply 2/22/2011 - 1:00am

So, my very first meeting with Dr. Dickson at Memorial Sloan Kettering is on Friday. I am anxious for it to get here! Ready to get the show on the road!

 

I am trying to put together a list of questions that I make sure to ask him. I know I don't want to overwhelm him with every question under the sun, but I was wondering if there are any qustions you all wish you had asked right away. You know, the question you thought of AFTER you got home.

 

I figure if I have a list, I will be less nervous and the appointment will be as successful as it can possibly be. smiley

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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heg50heg's picture
Replies 13
Last reply 2/21/2011 - 12:30pm

Hi everyone , this is my first post on hereb and I really could use some info. Iwas diagnosed as stage 3 melanoma after having a wide excision surgery and lymph node mapping with 2 nodes removed and one come back posative for cancer . In jan o this year had rest of lymph nodes under arm removed amd all were negative. Went to see a chemo dr. and he wants to scan my brain and lungs and abdomen to see if the cancer has spread. that really scared me as my surgeon said I was stage 3 and would have to do a year of interferon and now this dr says something different . What do I believe or does any Dr. really know what this desease can do to person. any thoughts or prognoses info would be apprciated

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kpcollins31's picture
Replies 19
Last reply 3/19/2011 - 9:46am

I am 37, the father of three young boys, and the sole provider for my family. I was just diagnosed with melanoma on Friday (2/18/2011) and am wading through all this new information. It is intimidating and frightening. I had a growth on my forarm... was large and unsightly but the doctor was not concerned. Initial diagnosis was keratoacanthoma. Now I get this report on a malignant melanoma... Breslow thickness >8mm, Clark level V, ulceration present, mitotic rate of 7. All Greek until I start doing some reading. Now I am almost wishing I had not read anything. Still a little shocked and scared. I am scheduled for a sentinal lymph node biopsy in a week on my birthday of all days. Hoping for the best present ever which would be a negative result.

Happy to have found this forum in my reading. Wish me luck.

Kevin

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Eileen L's picture
Replies 4
Last reply 2/20/2011 - 10:43am
Replies by: jag, dawn dion, Sharyn, lhaley

Hi to everyone. Haven't been on the boards in months and I see lots of new names. For all of you newly diagnosed folks, you have found the best place to get support and information. When I was first diagnosed stage IV in September, 2007 this board saved my butt!

I got results of my every four month scans this week and I continue to be stable. I have a few small tumors on my lungs and one on my adrenal gland. All have just been hanging out without any growth for the past two years. Oncologist has now recommended going to scans every six months, which I am OK with at this point.

For those who don't know me, I originally received a course of chemo (carbo/taxol) coupled with a drug called sorefenib/Nexavar. Sorefenib/nexavar is a BRAF inhibitor as well as an anti-angiogenic, FDA approved for kidney and liver cancer. Didn't prove effective for melanoma during Phase III trials, but a few of us lucky devils responded to it.  So I have been on the sorefenib/nexavar for over three years now!

Happy weekend to all!

Eileen L

Stage IV

 

 

 

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It was just suggested to me by a new friend to post this question.   I am B-RAF positive.  How many of you out there that are B-RAF positive have ever had any luck with IL-2.  What was your experience.   Would love to hear your answers, since I am currently trying to decide my best course of action.

Hugs and Smiles to you all

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

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Valentine's picture
Replies 2
Last reply 2/21/2011 - 9:28am
Replies by: Suzan AB, Vermont_Donna

I am almost 1 year NED.  Feb. 25 will be the one year anniversary of when they removed the lymph nodes in my left groin.  Prior to that I had 2 surgeries to remove melanoma from the bottom of my left foot. I staged at IIIb.

I have been wearing a thigh-high compression garment since May, but I have a lot of fluid hanging around my abdomen.  It took me from November to February to get an appointment with a lymphatic therapist. She has been teaching me the self massage routine, actually my husband helps me too.  So, we have only been at this a short time. Last night I/we noticed a very tender area on my side a few inches below my armpit. With my arm in the right position, there is also a lump or hard area to be felt.

I am hoping that this is somehow related to the lymphedema and is not more melanoma. On the other hand, I'm not feeling quite as jubilant as I was about reaching the one year mark. I actually had planned to celebrate like it was a birthday or something because I feel like all the time that I have lived since the cancer was removed is a gift from God.  Even with all of the physical restrictions, I am glad to be alive. Now I am afraid that the cancer may be back. The only good thing is that in the next 2 weeks I already have appointments scheduled with all of the appropriate doctors, so it will get looked at several times.

Has anyone else had something similar happen?

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It seems that melanoma stem cells are one reason why current treatments have limited success once metastasis has taken place. Although there is still much work to do, some promising research has been taking place. Here is an article that makes interesting reading:

New Therapies Offer Insight Into Battling Deadly Melanomas 

http://health.usnews.com/health-news/family-health/cancer/articles/2011/01/31/new-therapies-offer-insight-into-battling-deadly-melanomas

 

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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dawn dion's picture
Replies 4
Last reply 2/20/2011 - 3:53am

Good Morning All,

Okay I am very new to this whole thing, as I have said before, and I am CONFUSED!!!!!  Can some please explain the whole B-RAF positive thing to me.   I tested B-RAF positive, and frankly I am unsure of which route I want to take.   When my Dr. and I where discussing options and believe me it was breif she never once mention chemo to me, yet in the posts you all are talking about a chemo arm.   Did I miss something?   Please help me understand this.  My understanding is that Melenoma doesn't respond to chemo.  Again I am so CONFUSED!!!!

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

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glewis923's picture
Replies 2
Last reply 2/19/2011 - 3:12am
Replies by: Anonymous, glewis923

I'm sure most of you are aware of this, but here's a new version email today.  I just wanna know where I can stand in line to get it !,  and then stand in line to get IPI at the same time,  and not tell the respective Drs. that I'm getting both !!!!!

http://www.cancernetwork.com/melanoma-skin-cancer/content/article/10165/...

 

Love, Grady & Family.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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