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.

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My father has stage 4 Melanoma. It was removed off his leg March 2012 and again January 2013. Petscan was clear- 8 weeks later cancer is everywhere. He has had his first dose of yervoy... He was in the hospital before the treatment and now after- he can barely sit up has no energy, no appetite and needs hospital fluids... Has anyone else been this effected? I don't think he can live like this through 2 more Yervoy treatments and then wait for the turn around...is there anyone out there who can give me hope.?

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My father has stage 4 Melanoma. It was removed off his leg March 2012 and again January 2013. Petscan was clear- 8 weeks later cancer is everywhere. He has had his first dose of yervoy... He was in the hospital before the treatment and now after- he can barely sit up has no energy, no appetite and needs hospital fluids... Has anyone else been this effected? I don't think he can live like this through 2 more Yervoy treatments and then wait for the turn around...is there anyone out there who can give me hope.?

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http://online.liebertpub.com/doi/full/10.1089/jir.2012.0167#utm_source=P...

 

Immunomodulatory Effects of Interferons in Malignancies

To cite this article:
Joseph Bekisz, Yuki Sato, Chase Johnson, Syed R. Husain, Raj K. Puri, and Kathryn C. Zoon. Journal of Interferon & Cytokine Research. April 2013, 33(4): 154-161. doi:10.1089/jir.2012.0167.

Published in Volume: 33 Issue 4: April 9, 2013

 
Author information
Joseph Bekisz,1 Yuki Sato,2 Chase Johnson,1 Syed R. Husain,2 Raj K. Puri,2 and Kathryn C. Zoon1
1Cytokine Biology Section, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, Maryland.
2Tumor Vaccines and Biotechnology Branch, Division of Cellular and Gene Therapies, Center for Biologics Evaluation and Research, Food and Drug Administration, Bethesda, Maryland.
Address correspondence to:
Dr. Kathryn Zoon
Division of Intramural Research
National Institute of Allergy and Infectious Diseases

National Institutes of Health

Bldg 33, Rm 2N09G.2
33 North Drive
Bethesda, MD 20892

E-mail: kzoon@niaid.nih.gov

Received 19 December 2012
Accepted 28 January 2013
 
ABSTRACT

Investigation of the antitumor and immunomodulatory activities of interferon (IFN) began shortly after the cytokine was discovered in 1957. Early work showed a direct correlation between administration of IFN and inhibition of symptoms associated with virally induced leukemia in mice as well as an increase in their survival time. Subsequent studies with purified IFNs confirmed the direct and indirect stimulation of immune cells, resulting in antitumor activities of IFN. Clinically, IFN-alphas (αs) have been shown to have activity against a variety of tumors. Initially, the U.S. Food and Drug Administration licensed 2 recombinant IFN-αs for the treatment of hairy-cell leukemia and then later for several other cancers. The success rate seen with IFNs and certain tumors has been varied. Unfortunately, some neoplasms show no response to IFN. Monocytes/macrophages play an important role in cancer progression. Monocytes in combination with IFN may be an important therapy for several cancers. This article focuses on the role of IFN and monocytes alone or in combination in affecting malignancies.

 
Introduction

Interferon (IFN) was defined as an antiviral agent by Isaacs and Lindenmann (1957) and by Paucker and others (1962) for its antigrowth activity. Intron-A (IFN-α2b, recombinant; Schering-Plough) and Roferon-A (IFN-α2a, recombinant; Hoffmann-La Roche, Nutley, N.J.) were the first IFNs licensed by the U.S. Food and Drug Administration (USFDA) for the treatment of hairy-cell leukemia. This event was indeed a milestone and served to introduce biotechnology-derived products for the treatment of cancer. Later, the USFDA licensed Intron-A and Roferon-A for AIDS-related Kaposi's sarcoma (1988). Subsequently, Intron-A was licensed by the USFDA for malignant melanoma (1995) and follicular lymphoma (1997), and Roferon-A was licensed for chronic myelogenous leukemia (1995). IFN-γ1b (Actimmune) was licensed by the USFDA in 1991 for the treatment of chronic granulomatous disease and in 2000 for the treatment of malignant osteopetrosis. The primary functions associated with IFN-γ are related to host defense and immunomodulation (e.g., antiviral defense and MHC class I upregulation), but its antitumor effects have been widely examined. Studies show that IFN-γ plays an important role in tumor surveillance. In addition to antitumor effects associated with the immune system, IFN-γ affects tumors directly by virtue of its antiangiogenic and antiproliferative properties (Miller and others 2009). IFN-γ has been used for the treatment of various malignancies, including ovarian and colorectal cancers, as well as in combination with IFN-α in the treatment of chronic myelogenous leukemia, although with mixed results (Zaidi and Merlino 2011). Interestingly, IFN-γ has not been approved as a single agent by the USFDA for any malignancy.

Although Type I and II IFNs were used with varying success with certain neoplasms, exploration and possible enhancement of the components that contribute to these effects are, therefore, of great interest. This review will focus on some of the mechanisms of IFN signaling related to the antitumor and immunomodulatory activities associated with Type I and II IFNs that lead to cell death in vitro and in vivo. The role of immune cells, especially monocytes, and their interaction with IFN and their resultant antitumor activity will be discussed.

 

Article full text continues at link above.  Pretty technical stuff.

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Anybody have any information regarding the effect if any on bone density? Have been having terrible pain in right shoulder. Went to doctor, had drags, MRI, got called back to do CAT scan. Have a break in arm bone just under shoulder. Doc says bone "doesn't look right" Wants to talk to my oncologist. Afraid it might be mets. Grasping at straws.

It is what it is.

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Anybody have any information regarding the effect if any on bone density? Have been having terrible pain in right shoulder. Went to doctor, had drags, MRI, got called back to do CAT scan. Have a break in arm bone just under shoulder. Doc says bone "doesn't look right" Wants to talk to my oncologist. Afraid it might be mets. Grasping at straws.

It is what it is.

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Anybody have any information regarding the effect if any on bone density? Have been having terrible pain in right shoulder. Went to doctor, had drags, MRI, got called back to do CAT scan. Have a break in arm bone just under shoulder. Doc says bone "doesn't look right" Wants to talk to my oncologist. Afraid it might be mets. Grasping at straws.

It is what it is.

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DebFromOz's picture
Replies 2
Last reply 4/19/2013 - 12:46pm
Replies by: DebFromOz, DebbieH

hello old mates! I thought i would pop in and say a quick hello - have been NED for a few years and its coming up to my 17 year anniversary this year living with the beast! Have missed you all and our chats but just wanted to let you all know im living the life and think of you all often and hope you are all doing well!

My little baby, Charlotte is turning 7 this year , that time has gone so fast.

I turned 40 last year - something they said wasnt meant to happen - as the beast was supposed to get me 5 years from my initial! HA kicked its butt didnt i????

im out having a blast on my horses and jumping higher than i ever did!

Paul is great.

The house is finally starting to get renovated after 13 years of living in it. ( cant do this too fast these days!)

My health has been up and down - but thats to be expected with the cold weather approaching us fast these days my asthma is always playing up!

Hope to catch up a bit on whats been going on - im mainly on FB these days and would love to catch up with the oldies i used to hang out with more!

Talk to you all soon

Deb

PS Kim K - i need updates - i miss our chats more than anything! The girls must be growing up too fast! FB me girl!!! PLEASE!!!

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hello old mates! I thought i would pop in and say a quick hello - have been NED for a few years and its coming up to my 17 year anniversary this year living with the beast! Have missed you all and our chats but just wanted to let you all know im living the life and think of you all often and hope you are all doing well!

My little baby, Charlotte is turning 7 this year , that time has gone so fast.

I turned 40 last year - something they said wasnt meant to happen - as the beast was supposed to get me 5 years from my initial! HA kicked its butt didnt i????

im out having a blast on my horses and jumping higher than i ever did!

Paul is great.

The house is finally starting to get renovated after 13 years of living in it. ( cant do this too fast these days!)

My health has been up and down - but thats to be expected with the cold weather approaching us fast these days my asthma is always playing up!

Hope to catch up a bit on whats been going on - im mainly on FB these days and would love to catch up with the oldies i used to hang out with more!

Talk to you all soon

Deb

PS Kim K - i need updates - i miss our chats more than anything! The girls must be growing up too fast! FB me girl!!! PLEASE!!!

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vivian's picture
Replies 4
Last reply 4/21/2013 - 3:14pm
Replies by: vivian, rbruce, Kim K, kylez

Hi All,

I had a VATS wedge resection of a lung met (lower left lobe) back in November 2012.   The surgery went well and I have been NED since - Yay!  However, in the last couple of months I have had continuing moderate pain which seems to be located underneath the front ribs in the area of the stomach.  Nothing shows up on scans, and there is nothing palpable.  The oncologist says this is likely  referred pain from the VATS.  Obviously nerves and muscles were disturbed, so perhaps that is true, but it just doesn't feel nerve or muscle pain, more "organic".  The whole left side of my upper body is weird anyway because of the original wide excision, the lymph node dissection, an in-transit excision, and finally the thoracic surgery.   I was pretty convinced that the scans were going to be bad, because of the pain, but fortunately I was wrong.  Do any of you thoracic surgery veterans have experience with referred pain?   Would you just wait it out and see if it goes away or lobby for further testing?  Thanks for any help/advice!

Lear 

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Kim K's picture
Replies 1
Last reply 4/23/2013 - 11:18am
Replies by: dian in spokane

Or was it just her spine that was clean.  How is her lung met?  If she is really NED from the IL-2 we need to shout out loud and congratulate her.  Her odds of living another 5 years just shot up if that is the case!  Plenty of time to get that hand of hers back to playing dueling banjos without skipping a beat.

Hang in there Dian!  We are all pulling for you.  You are one tough cookie!

Aloha from Hawaii,

Kim K

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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Conrad Lihilihi and Dr. Khasha Touloei made this very well edited video about 4 minutes long. It included some interview snippets with me about 2 years ago, where I talked about the treatments I had had up to that point. If you want to get to know me a little bit the link is http://www.youtube.com/watch?v=cGzoPVs_PFc.  
- Kyle

2 primaries; lung/brain mets in past; paratracheal lymph node currently; participating in  Opdivo/Lirilumab trial

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betsy's picture
Replies 11
Last reply 4/19/2013 - 10:25pm

Ron was staged 3c 4 years ago with primary in his back removed and all inguinal and partial iliac (not sure how many) nodes on left side removed. It was a large, deep tumor, and I don't think the doctors felt extremely positive about it.
Now, after his 4 year clean scan, which is AWESOME, I find out they plan on stopping the PET CT scans after next year, and I'm shaken. I understand with my head and I have a year to become comfortable with this, but I would like input from others. I know 5 years is a big deal, but I also recognize the capriciousness of melanoma.
We discovered melanoma only after lymph nodes were large enough to be readily felt, and it seemed sudden. I don't EXPECT melanoma, but I don't want to take a chance on finding something out too late.
I'm coming here again because I have always received comfort when needed, and solid information and advice.
Thanks,
Betsy

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ncdaniel's picture
Replies 2
Last reply 4/18/2013 - 11:25am
Replies by: POW, Tina D

My wife is experiencing memory loss since she had one dose of Yervoy. She previously had IL2 and seemed okay with that maybe slight memory loss. But this time it is much worse. She many time cannot remember the name of something or how many pills to take and sometimes is just slightly confused. She has been on 80mg of prednisone ( now 30mg)  and has had only one dose of Yervoy before colitis started and was treated with 100 mg  prednisone. Also was treated with Remicade (one dose) in the last month. She is scheduled to have scans in three weeks and a brain MRI done. I am just wondering what other experienced did this clear up or is there concern of brain METS.

Daniel 

Trust in God - Live one day at a time

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NYKaren's picture
Replies 1
Last reply 4/21/2013 - 1:44pm
Replies by: aldakota22

Hey Al,
We're missing you 'round here.
Hope you're okay
Karen

Don't Stop Believing

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Charlie S's picture
Replies 31
Last reply 4/18/2013 - 11:28pm

For many reasons when one of our own fall on challenging times, be it out fear or apprehension, it is easy to draw back and say nothing.

So, I want to say something. 

YOU GO DIAN !

Yes, it sucketh from great heights that post IL2 your body imploded.  Yes it sucks that your body had done so well in tolerance of the offense, but stuff happens and you know it.  You have overcame more than this in the past which is why you are strong and will overcome, adapt and conquer the new challenges ahead

Your conjoined alter ego, Cigar Bob , has stood beside you and with you.  The two of you are as one.

In a better day on this board, many of us physically met, in person, the people we posted to, and chatted with.  To my delight, Dian and Bob were two of them.

I don't do facebook but I do MPIP and by golly Dian and Bob, know we are behind you.

Sooooooooooo, come on MPIP'ers, step up, pound your chest and shout to the skies two words..............GO DIAN.

If we shout loud enough, she and Bob will hear us.

Oh yeah, be sure and post it too !

Keep going you two.

 

Cheers,

Charlie S

 

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