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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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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Emrina's picture
Replies 4
Last reply 2/18/2011 - 9:05pm
Replies by: SusanE, Hawaii Bob

Good Day to you all from South Africa.  My husband was diagnosed with Stage IV MM on 22 December 2010.  The Melanoma has spread to 2 occipital lymphnodes, right cervical lymph node and additional smaller (sub-cm) nodes as well as a single  node present in the posperior mediastinum and both lungs (muliple bilateral pulmonary metastases).  He was given 3 options.  No treatment, DTIC or the Clinical Trail.  We went for a 2nd opinion and the diagnoses was the same.  He was approved to take part in the OncoVex Clinical Trail.  Luckily he got the OncoVex GM-SCF arm of the trail.  He had his first injection on 18 January 2011 and the 2nd on 8 February 2011.  His next injection will be 22 February 2011.  He had side effects like headaches, vomiting, nausea, body aches and pains, tiredness and overall just not feeling well.  With the 2nd injection he had with the mentions side effects diaree also.  I have found only 1 guy in America that was on OncoVex for a year and he a "partial responder".  Is there anybody out there that is willing to share their experience with OncoVex with us. 

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mom3girlsFL's picture
Replies 1
Last reply 2/18/2011 - 7:37pm
Replies by: JakeinNY

Hi Everyone,

I have been an on/off "browser" since my initial diagnosis in 92 and find myself needing a support system.  A brief history:

1992 mole removed from shin, clark III/iV, breslow .9mm, wide excision performed

2010 enlarged groin node, PET confirmed

3/10 groin node dissection, 4/5 nodes melanoma

4/10 port installed, begin high dose interferon

5/10-8/10 hd int complete, self inj started - on and off treatment due to low wbc

9/10 PET new node, obturator node lit

9/10 obturator node/radical lymph node dissection, 9/11 nodes melanoma

Failed interferon.  No trials take me due to auto immune disease

11/10 NED!!!  PET clear!!!

11/10- present "watch and wait"

I feel like the luckiest girl alive after a year of sheer hell!  I am grateful for a place like this to come to.  I hope I can provide others with insight as well as continuing to learn from all of you about different treatments.  I hope to offer support and hope because I will be sure to ask for it myself as my journey continues.  Thanks for listening.

Laurie

Do not fear tomorrow, God is already there.

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Redhorse's picture
Replies 3
Last reply 2/18/2011 - 7:28pm
Replies by: LynnLuc, lhaley, TAC

Not sure what to do. Doc wants to cut me Dow the middle to get biopsies from both lungs. I can also just go with him taking one nodule from my left lung, see what it comes up with, and then wait for one of the nodules in right lung get big enough for another cutting session. I also have "numerous" nodules in the bottom of both lungs.
I don'think it is the same cancer. I have been diagnosed with prostate cancer that spread to my bladder, and had melanoma removed from chest in2007,
Anyone had this type of surgery, and if you had them go down the middle, please let me know how that turned out.

Thank you,

Miley

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