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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london22's picture
Replies 5
Last reply 12/27/2012 - 1:35am
Replies by: BrianP, Snickers60, vicuk, Swanee

I am the son of a woman, 63, diagnosed with melanoma. The melanoma is currently underneath the armpit and quite large (large marble). A CT Scan has come back clear although there is the smallest sign of cancer in the 8th rib. The Doctor has suggested Zelboraf for now. We are waiting for the drug to come through and may have to start a little chemo before we receive it (NHS UK). I am desperate for everything to be well. I lost my Dad when I was 15 and am 22 years old now. I am writing for support and advise about what we mght expect. I am unsure what stage my Mum should be placed under as it is ony in the 8th rib and not yet in any organs. I love her so much the panic sets in that I may be losing her. I need help and support from my new fellow warriors. 

Loved today and forever

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News

Merkel Cell Carcinoma Prognosis Linked to Vitamin D

 

IMNG Medical Media, 2012 Nov 7, B Jancin

Case Report Indicates Melanoma Treatment With Vemurafenib Can Trigger Leukemia

 

IMNG Medical Media, 2012 Nov 7, JS Macneil

Imaging Unwarranted in Primary Cutaneous Melanoma

 

IMNG Medical Media, 2012 Oct 25, S Worcester

More Evidence Links Tanning Beds to Skin Cancer

 

IMNG Medical Media, 2012 Oct 11, MA Moon

Dual Kinase Therapy Slows BRAF Mutated Metastatic Melanoma

 

IMNG Medical Media, 2012 Oct 1, S Freeman

SPECT/CT Before SLN Excision Improves Melanoma Survival

 

IMNG Medical Media, 2012 Sept 11, J Smith

KIT Inhibition Promising for Select Few

 

IMNG Medical Media, 2012 Aug 20, D McNamara

GSK’s Oncology Expansion Heavily Dependent on Dabrafenib, Trametinib

 

IMNG Medical Media, 2012 Aug 7, S Sutter
 

 

Expert Opinion

Dual-Targeted Therapies for the Treatment of Metastatic Melanoma

 

Interview by L Scott Zoeller, 2012 Nov 16, Igor Puzanov, et al
 

 

Journal Scans: Research

Deep Muscular Fascia Preservation and Locoregional Control in Melanoma

Free Journal Content

Surgery, 2012 Dec 4, TE Grotz, et al

Obesity and Risk of Malignant Melanoma

Free Journal Content

Eur J Cancer, 2012 Nov 29, TN Sergentanis, et al

Dabrafenib in BRAF-Mutant Melanoma Metastatic to the Brain

 

Lancet Oncol, 2012 Oct 7, GV Long, et al

Significant Risk of Skin Cancer Associated With Indoor Tanning

Free Journal Content

BMJ, 2012 Oct 2, M Wehner, et al

BRAF–MEK Inhibitor Combination Delays BRAF Resistance in Melanoma

 

N Engl J Med, 2012 Sept 29, KT Flaherty, et al
 

 

Journal Scans: Review

Epidemiology and Management of Uveal Melanoma

 

Hematol Oncol Clin North Am, 2012 Dec 1, Y Yonekawa, et al

Merkel Cell Carcinoma

 

Hematol Oncol Clin North Am, 2012 Dec 1, SY Han, et al

Antitumor Effectiveness of Electrochemotherapy

 

Eur J Surg Oncol, 2012 Sept 12, B Mali, et al
 

 
 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Fen's picture
Replies 3
Last reply 12/26/2012 - 5:28pm
Replies by: bigb0624, Fen, dellriol

I apologize for taking up space for an unrelated issue.  I need to find a decent derm in St. Louis - not necessarily a melanoma specialist, just someone who is good who a relative can get to see quickly.  Anyone have any suggestions?    Thanks in advance.    Fen 

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o2bcheri's picture
Replies 7
Last reply 12/26/2012 - 5:22pm
Replies by: JakeinNY, o2bcheri, Anonymous, Tim--MRF, POW, buffcody

I saw this story posted on the FaceBook page for the National Cancer Research Foundation.. the creators of Cellect... the natural supplement that has been miraculous in treating cancer... 

thought i would share with you guys... This just happened this past weekend... its soooo exciting!!!  

 

 

Over the past weekend, we thought Andy was going to die from his lung cancer. He was having trouble breathing, doctors first thought it was pneumonia because he was diagnosed with lung cancer, Lippo Sarcoma, this past Memorial Day. Because Andy refused all treatments and only took Cellect, they told him he would die before the summer was out. Here we are approaching Christmas. He was having a difficult time catching his breath, we honestly thought it was the end for Andy, but he was still grateful because he lived longer than the doctors offered with their treatments. The doctor called in hospice care at the hospital. We were all upset because this was the end. 

Sunday after night, Andy was heaving and heaving, the doctors wanted to up the morphine to cause him to relax and die. While the doctors were trying to set up the equipment, Andy was having trouble breathing, and was choking, a team came in to clear the airway, then they saw something in his throat. Some tools, I do not know what they are, like long thin clamps, they pulled it out.

All of a sudden Andy started to inhale so deeply like he just finished a marathon, trying to catch his breath. But he was smiling and happy, it was not a struggle, after a few minutes, he was able to calm down and breathe more normally. The doctor said that he was breathing normal but that there was a lot of blood but pulse, and blood pressure were closer to normal.

They canceled the morphine and started to help him calm down. The oxygen levels improved and everything was improving a little at a time. The doctor said that it appeared to him that the lung tumor had started to die and detached from the lung area and Andy’s body was trying to get it out. Three hours later, Andy was able to eat a regular meal. 

This is similar to what happened in the past after he had a massage therapy. The doctors at that time thought it was coincidence. There is no way it was coincidence, now they are listening. 

Monday was a PET scan to see how the tumor was in his lung. Andy did not have any stress or pain. During the pet scan, the tech asked Andy many times if he had a tumor in the ling because he could not find it. When the tech went to older test results, he was able to see it. He would not comment at all to Andy. We did not care what the scan said because Andy was feeling great and was only interested in going home. 

As soon as the doctor came in, the tech almost ran to him, they disappeared. 20 minutes later, the doctor came back and told Andy that the PET scan does not show anything. The pathology confirmed that the tumor that came out was cancerous, and because there is no evidence in this new scan, he said it is safe to say that the tumor he coughed out was that same tumor. He said he never heard of anything like that before.

When Andy asked if he was cancer free, the doctor grabbed a chair and sat down and said that he has no idea what happened, but he did say that the cancer that came out was from the lung. When he saw all that blood, his first instinct was that the cancer grew massively and that the blood was a bad thing. Now he believes that the blood was caused because the cancerous tumor was dying and tore away from the walls in the lung, causing some blood and healed afterwards. He said he never saw that before. 

He said that he is being cautious, he wants to wait a few months to see what happens. Andy said that because the doctors told him during the Memorial Day weekend that he would be dead in a few months, he already passed his given time, so, he is patient and will wait.

Andy is still weak in his legs and arms because he was in bed so much. The doctor said that because there is no evidence, he was not sure what to do, so Andy said he wanted to go home. We brought Andy home last night. He woke up this morning and kept taking big deep breaths and now wants to challenge anyone. I think he is happy. He wanted pancakes and bacon with lots of maple syrup. He drank Tetley tea called British blend. He said that is Fred’s favorite. I don’t know if that is true. 

This morning, he declared that he no longer has cancer and will not return to his doctor for any tests. I think when he calms down, he will probably agree to non-evasive tests. I told him that he has to show the world that he is a survivor and that he will need to take those tests to validate it. 

This is a wonderful Christmas. To think that Andy was within minutes of getting a lethal amount of morphine to be put down like a dog. And here his cancer is out of his body. I wonder how many people had coughed up blood or tumor particles, or had pneumonia like symptoms and their doctors thought that it was increased cancer. Now we saw first-hand that it was the cancer breaking down and the body trying to get rid of it.

I hope that this update puts a smile on your face just like our entire family is smiling, it is the best Christmas present we could have ever received. Thank you Laurie and Fred, you saved our family

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POW's picture
Replies 11
Last reply 12/26/2012 - 1:14pm

My brother was diagnosed 6 months ago Stage IV with mets all over, including the brain. A combination of WBR and Zelboraf worked well for 5 months. Recently, a liver tumor started growing again and his oncologist said that he was becoming resistant to the Z. He is now off Z for a 30 day "wash out" period and then he will either get into an anti-PD-1 clinical trial (fingers crossed) or he will try try Ipi. Both of these treatments are based on monoclonal antibodies.

My concern is that melanoma that is resistant to Z often comes back more aggressive than it was originally. I think I'm beginning to see signs that his brain tumors are growing already (slurred speech, extreme fatigue, unstable walk) although this could just be paranoia on my part. My concern is that his tumors will grow so fast that he won't survive the wash out period plus the 4-8 weeks it takes these antibody-based treatments to exert an effect. But, really, what choice does he have? Any hopeful stories out there? Any suggestions?

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mel123's picture
Replies 34
Last reply 12/26/2012 - 11:08am

I'm curious about how many of us have a family history of melanoma; I personally feel like any cancer is part genetics, part environment, but I thought an informal poll of the melanoma community might be telling. I have a family history, but also have gotten sunburned several times and used tanning beds,  and I'm sure that there are people who only had one of those factors, or maybe neither. 

"For God has not given us a spirit of fear, but of power and of love and of a sound mind" 2 Timothy 1:7 melwithmelanoma.blogspot.com

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Nell's picture
Replies 5
Last reply 12/25/2012 - 8:28pm

Heard that testing of the vaccine POL-103A is starting for Stages II and III..anyone know much about this?

One voice can make a song; one life can change the world.

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mama1960's picture
Replies 5
Last reply 12/25/2012 - 1:26pm

I am so thankful to able to spend another Christmas with my family! I am recovered from surgery and feel really good. I hope every patient and caregiver affected by this terrible disease has the best possible holiday.

It is what it is.

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mom.of.2.littles.MIS's picture
Replies 1
Last reply 12/25/2012 - 9:32am
Replies by: buffcody

Hi there

I am new here.

 

I was diagnosed w. Melanoma in situ 10 days ago, on my neck and was able to have a wide excision done the same day.  The margins came back clear.

 

So I thought phew....

 

well 10 days later, I just happened to feel a palpable lymph node the size of a pea in my posterior cervical lymph nodes.  This is just 2cm or so away from the edge of my incision.

 

 

I am so nervous ;/

My derm said to wait it out a few wks 

 

I chose to go ahead and see my family dr and a gen surgeon who I have seen once prior for unrelated issue.  I will be seeing them both next Thursday (27th Dec)  I have a huge deductible, so I also wanted to get these appts taken care of as deductible was met, but who am I kidding, I am getting seen b.c I want to be thorough and I want to get it biopsied if need be....

 

I am not sure of what my questions are...

 

Does anyone think I am jumping the gun? I have 2 tots at home, I really feel like I want to nip this in the bud ASAP.  I also am not sure what I am wanting the drs to tell me this Thurs?  It seems so sketchy to me that it is so close to surgical site and to be palpable...I understand that it could be from post-op recovery from the MIS surgery/excision.  But I just am not sure.....Should I be thinking I will have it biopsied? or a scan? I have heard they can do CT scans? I am allergic to iodine, which means I couldn't use contrast, so I am not sure I could have that done.  What is the lymph biopsy like? Is there risk of spread when they remove the node? or risk of lymphedema locally??  I'm sorry for all the Qs, thought a patient perpsective would help me to think more clearly...

 

Anyone heard of this happening with MIS?  I know I am supposed to be happy that I was in the 99% clear range and I totally was until I accidentally felt this lymph node.  I have never felt a palpable post cervical node prior, I def have felt ant. cervical w. sore throat or allergies/sinus issues etc...

 

Thank you for taking the time to read

Any advice would be appreciated

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Over the past couple of months that I have been reading the posts on the Forum, I have seen this question raised.  I came across a just published aritcle, or at least the abstract of an artcle, on the topic.  A read of the abstract makes me think that side effects from PI  would be more of a "bear," as one poster described them than conventional. The positives of PI seem to be linked to  its convenience in administration but not length of application period.   A link to the abstract is below.

http://journals.lww.com/immunotherapy-journal/Abstract/2013/01000/Real_life_Experience_With_Pegylated_Interferon_and.7.aspx

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buffcody's picture
Replies 2
Last reply 12/25/2012 - 5:51am
Replies by: LynnLuc, POW

My wife the other night was rejoicing that I was now NED.  I said I thought that was not clearly the case.  I've only had one met to the body.  That was surgically removed, and my last PET scan was negative for any cancer.  But my last MRI showed me with two very small brain mets.  Both of those were "dealt with" by SRS, according to the onc, successfully.  Does successful SRS treatment of the brain mean that my brain is currently NED?  Guess that's my question before I claim the status. I know, despite being hit by SRS, you can still see something on MRIs in the area that was radiated.

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Erinmay22's picture
Replies 7
Last reply 12/24/2012 - 1:38pm
Replies by: Erinmay22, Tina D, vivian, POW

 

Got my scan results. As my doctor said 'basically everything looks ok'. Except that a lymph node they were unable to remove during surgery has grown. Ipi can take awhile to kick in, right?   
 
Next steps - being referred to the immunotherapy team at Sloan to try and get started on the anti-pd1 trial in January. Will share more details about that trial once I get more info!  
 
The last 2 trials I tried to get in to didn't work out (meaning I didn't get in).  I was too far past the date with the Ipi trial in Jan 2011 since they had to biopsy lung nodules.  Then after lung nodules confirmed melanoma in Mar '11 I tried to get in to the braf trial.  When they scanned again in Apr everything was gone and I couldn't get in to the trial...  and then within 6 months both were fda approved!  Let's see if a 3rd time of trying to get in a trial is the charm?  One can dream, right?  :)  Now if I could only get my anxiety under control!  lol!
 
Happy Holidays Everyone!
Erin
www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Anonymous's picture
Anonymous
Replies 10
Last reply 12/24/2012 - 8:59am

I didn't post often, but frequented the site to find helpful info. My mom passed away Friday evening after a 10 month melanoma battle. She was young, vibrant, giving, caring, so loving... I could go on and on. I pray for each and every one of you, patient and caregiver, and those of you who have lost a loved one to this horrible cancer. Never give up.

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mom.of.2.littles.MIS's picture
Replies 2
Last reply 12/24/2012 - 8:25am
Replies by: Janner, jmmm

Hi there

I am new here.

 

I was diagnosed w. Melanoma in situ 10 days ago, on my neck and was able to have a wide excision done the same day.  The margins came back clear.

 

So I thought phew....

 

well 10 days later, I just happened to feel a palpable lymph node the size of a pea in my posterior cervical lymph nodes.  This is just 2cm or so away from the edge of my incision.

 

 

I am so nervous ;/

My derm said to wait it out a few wks 

 

I chose to go ahead and see my family dr and a gen surgeon who I have seen once prior for unrelated issue.  I will be seeing them both next Thursday (27th Dec)  I have a huge deductible, so I also wanted to get these appts taken care of as deductible was met, but who am I kidding, I am getting seen b.c I want to be thorough and I want to get it biopsied if need be....

 

I am not sure of what my questions are...

 

Does anyone think I am jumping the gun? I have 2 tots at home, I really feel like I want to nip this in the bud ASAP.  I also am not sure what I am wanting the drs to tell me this Thurs?  It seems so sketchy to me that it is so close to surgical site and to be palpable...I understand that it could be from post-op recovery from the MIS surgery/excision.  But I just am not sure.....Should I be thinking I will have it biopsied? or a scan? I have heard they can do CT scans? I am allergic to iodine, which means I couldn't use contrast, so I am not sure I could have that done.  What is the lymph biopsy like? Is there risk of spread when they remove the node? or risk of lymphedema locally??  I'm sorry for all the Qs, thought a patient perpsective would help me to think more clearly...

 

Anyone heard of this happening with MIS?  I know I am supposed to be happy that I was in the 99% clear range and I totally was until I accidentally felt this lymph node.  I have never felt a palpable post cervical node prior, I def have felt ant. cervical w. sore throat or allergies/sinus issues etc...

 

Thank you for taking the time to read

Any advice would be appreciated

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DA Boston 42's picture
Replies 3
Last reply 12/23/2012 - 10:25pm

Hi everyone,
I used to take zelboraf and want to take it again.
I also used it when it was a clinical trial. I am of course BRAF positive.
Anyone have any thoughts about doing Zelboraf again?
Please respond!
Thank you,
Don Armstrong

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