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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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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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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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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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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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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elefk's picture
Replies 7
Last reply 2/20/2011 - 1:54pm
Replies by: JerryfromFauq, elefk, Anonymous, Fen, washoegal

I am newly diagnosed with internal melanoma. I would like to hear about anyone on clinical trials or other treatment plans.

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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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lhaley's picture
Replies 15
Last reply 2/20/2011 - 6:59am

I never thought I would be happy to hear those words, aren't we all looking for clear scans! But I'm thrilled.  One nodule in lung is still 7 mm and the other is 4.5 mm.  No change from last scan (for smaller nodule it's been at least 2 scans).  In the past I've had PET/CT's, this time they did the PET and also a diagnostic ct of the chest, abdomen and pelvic area.  He feels they have more of a baseline now to go on.  Mel specialist says that while last scan he was worried he's not thinking the same thing now since all else is clear and this hasn't changed. No light up at all from it on the PET! Next scan in 3 months!

Meanwhile he was very concerned when he learned that my breast has been pink.  Called in the surgeon that had done my surgery several months ago.  They couldn't feel anything but he talked about always being on the look out for breast cancer. WHAT!!  So, they have ordered a mammagram for the right breast and told me that I have to somehow get through the bilateral mri.  While they don't think there is a problem I can't ignore this.  But for the night I'm going to just sit here smuggly knowing that it's Linda 5, melanoma 0!!

They also checked the liver numbers again, don't have those results yet.   Long day. Left at 7am and walked in the door at 8pm.

Linda

Who knows if I'm NED or not but been stage IV since 06 and doing great!!

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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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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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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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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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CLPrice31's picture
Replies 25
Last reply 2/18/2011 - 11:58pm

Hi all! I am the latest newbie...stage 3, "some would say stage 4" 23 year old from Virginia.

It started similiarly to many other stories. I was washing the dishes, had an itch, scratched my back and felt something unusual: the mole on my left shoulder felt like a scab. When I had my boyfriend look at it, he realized there was a clear fluid coming from it. Although the mole had healed by my appoinment with my dermatologist, I decided to have it checked out anyway. He seemed confident it was nothing, but just to be sure, he removed it.

On January 10, 2011 I went in to have my stiches removed. I am joking with the nurse, making plans for my evening, when the doctor walks in. I hear, blah, blah blah, "Malignant Melanoma. No, I wish I was joking."

Oh.

That is SO not what I want to hear...

On January 26, 2011 I went in for a wide excision and a lymph node biopsy. Unfortunately for me, 4 areas lit up when the tech's injected the dye: both armpits, both sides of my neck. Prior to rolling me into the OR, my surgeon let me know that if he could find the lymph nodes, he was removing them. Waking up from surgery, he, who I refer to as Dr. Pink (breast cancer advocate,) was right there...Yes, he removed nodes from all 4 areas. Yes, it's going to hurt for a while.

(Dr. Pink was right about the pain...OUCH. And the numbness I still feel 2 weeks later? Very odd. Lucky for me, my body rejected either the tape they used to cover the incisions or the glue used to seal me shut...Now I am covered in an itchy, raw, red rash. I started an antibiotic a week ago, so far it is not working.)

A week of pain and waiting passes...the oncologist, (who I refer to as Dr. Bad Mustache. Love him but...!!) calls me into the office. 3 out of 4 locations tested positive for metastatic malignant melanoma.

More bad news.

Off I go for the PET CT and MRI...Both came back clear! Finally...good news!

Now...here's where I need help. My oncologist here believes Interferon is my only option at this point.

I don't like what I have read about Interferon so far.....Experiences from you all? Thoughts?

I have an appointment with Dr. Mark Dickson at Sloan Kettering in New York City on the 25th of this month. Any opinions here?

My oncologist here stressed that I am an "odd" case. My original melanoma was only 1.15 mm. It hardly made critera for additional testing. He admitted to us this week that he did not believe my lymph nodes would come back positive. And he especially could not believe that multiple locations were positive. In his words, "You are an odd case. Right now all we know is that it has the ability to spread."

Any advice, support, experiences...I would greatly appreciate hearing it all. Like many of you, I have a hard time resting. I am doing as much research as I can possibly do, but sometimes that does nothing but terrify me even more!

In advance, thank you for any and all help!

"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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KellieSue's picture
Replies 3
Last reply 2/18/2011 - 11:13pm
Replies by: lhaley, glewis923, Lori C

Well, met with oncologist today and I did test positive for B-RAF. But.....apparently my insurance company now has to pre-approve me for a clinical trial. WTF? It's not like they will be paying for it, well I guess if I get the chemo arm they will. But c'mon. I wait 2 weeks for the results and then I have to wait again? If I'm denied I know my oncologist will just keep reapplying until they say Yes.

I had a good long discussion about all my options and I feel confident going forward with B-RAF. IL-2 is not out of the picture but with the toxicity I faced with it and the long recovery I would not finish the round now, I would start over again. I'm not against it but right now I'd prefer to try something that might not make me so horribly sick.

Another 8 weeks of ALT-801 might be an option also. DR. is trying to allow them to dose me at a higher dose than before. I responded both times I did an 8 week cycle.  

So I guess waiting around again.

Kellie(from Iowa) Stage IV since June 2008

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

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