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.

Expand/ Collapse Topic
 
Replies By
View Topic
JerryfromFauq's picture
Replies 2
Last reply 10/3/2011 - 3:44pm
Replies by: ValinMtl, Hawaii Bob

http://www.sciencedaily.com/releases/2011/07/110720142513.htm

Breakthrough in Melanoma Research: Protein Suppresses Progression of Melanoma

ScienceDaily (Dec. 23, 2010) — In a breakthrough that could lead to new treatments for patients with malignant melanoma, researchers from Mount Sinai School of Medicine have discovered that a particular protein suppresses the progression of melanoma through regulation of an oncogene, or gene responsible for cancer growth.

***************

"Researchers then manipulated macroH2A levels in melanoma and found that when they removed it in the early stages of the disease, the melanoma progressed more aggressively both in growth and metastasis. Adding macroH2A to late-stage aggressive melanoma cells created the opposite effect."

I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

jmmm's picture
Replies 2
Last reply 10/4/2011 - 5:32pm

Has anyone had a yervoy, or even through a trial (ipi) reiunduction?  My husband had a mixed response to Yervoy--2 solid tumors (one near his heart and one in his GI tract) completely disappeared, but 2 new ones have developed (before his 14 week scans) since then.  They are slowly growing.  We stumbled upon the fact that several people have had insurance cover Yervoy reinductions.  We are wondering how many doses anyone received.  I know that according to the website, they'll do a full 4 doses (assuming we can get insurance to cover it), but we know that some of the trials did doses less often.  We know that the cancer stopped growing and started shrinking sometime before his 2nd dose in the original reinduction--he stopped bleeding from the GI tumor) and are worried that a full 4 doses could be too much.  We were wondering about 1 dose every 2-3 months to simply keep the cancer at bay.  Any thoughts??  He's the only patient his doctor has on Yervoy.  We've consulted with a specialist a couple of times, but he says there's no "right" thing to do for the reinduction.  We were just curious as to what other people had done.  Thank you

Login or register to post replies.

glewis923's picture
Replies 4
Last reply 10/3/2011 - 12:07pm

Dear ALL fellow Met-mel fighters:  Just had MRI /CT scans:  very grateful about results:  

1)  No spread to other organs.  

2) Lung numerous tumors have shrunk dramatically or are gone.  A couple just stable but small.  Big medial hilar region that poped up also regressed.

3) Multiple brain tumors have mostly shrunk (regressed) or just stable.  Some or most could be just plain old dead! I hope.

4) Been on Zelboraf for almost 5 weeks......developed some "sores" that Mayo Dr. on Friday is convinced is Shingles!  I can deal with that, but strange.  Anyone else heard of such?

Background:  Since May 2009 several chemo & interferon.  Feb. had 7 brain tumors SRS zapped, and 10 days WBR.   Did regimine of Yervoy March thru May of 2011.  Started Zelboraf Aug. 19th? and still on it.  

I should have already been dead- Just very thankful that something- all of the above perhaps- has kept me mostly stable or regressed; but not naive enuff to think i'm anywhere close to being "Outta the woods"

 

Love ALL,  Grady.

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.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 10/2/2011 - 8:53pm
Replies by: Anonymous

Hi Becky,

Before you make a final decision on Yeroy, which could give you severe side effects, you might want to discuss PD1 & PDL-1 with your doctor.

It is a immunology treatment like yervoy with less side effects. So far, data as shown PD1 & PDL-1 drugs are more effective than Yervoy with very mild side effects if any.

Since you are at Angles Clinic, I heard that PD1 & PDL-1 clinical trials would be opening at Angeles Clinic soon.

I would definately ask you doctor about PD1 & PDL-1 before getting your insurance approval for Yervoy.

It would be greatly appreciated by all of us if you can CONFIRM  if PD1 & PDL-1 clinical trials will be opening soon at Angles Clinic. I think that all of us want to know where we could get a PD1 & Pdl-1 drug if needed.

Thanks & good luck with your decision for treatment

A.

Login or register to post replies.

nicole's picture
Replies 13
Last reply 10/3/2011 - 11:51pm

Hey everyone! some of you may remember me from years ago... my husband Sean passed away from melanoma in august, 2008...  Since then my life has been completely different! our daughters and i have had our good and bad days, but i think we are coping well...   Unfortunately though, the battle still continues for us! our youngest daughter ella seems to have been stricken with a very high risk for melanoma.. Not only has she lost her dad to melanoma, but by the age of 3, she had a spitz nevus removed and had to have surgery to have a descent sized dysplastic nevus removed... She is now 4 and has another 'spot' on her torso that measures 2.2cm by 9mm.. it is about a shade or 2 darker then her actual skin color and it has been there for about 2 months.. She sees a dermatologist regularly and i also took her in to her family doctor as soon as i realized this is a spot that is not going away! (at first i just thought it was a faded bruise). Her family doctor (who has actually been very wonderful with ella and has significantly helped keeping up with her skin checks) has recommended waiting and watching this spot and re-measuring on a monthly basis-her appt. with her derm is this coming wednesday. At first i agreed with watching it, but after thinking about it CONSTANTLY, i have come to the conclusion that i don't want to wait and watch it! I don't want to watch it grow and turn into something atypical! Yes, it looks harmless now, so why can't we remove it now before it does turn into something harmful?! I called her doctor back and let him know how i feel about the situation, but it is not as simple as just going to get a quick biopsy a the dr.s office-she will have to have a referral to her pediatric surgeon and they will have to put her out... so there are risks with that!  I have a feeling her dermatologist will say the same thing about watching and waiting. I guess this post is more of a venting post then a question!  Anyways... any suggestions for me? Any points that i should bring up with her derm to as WHY she should have this removed?! Anyone that has had any experience with pediatric melanoma-what did your childs melanoma look like?! I do know that a majority of childhood melanomas are not necessarily presented as a melanoma would during adulthood.. Does anyone agree or disagree that the risk is higher to leave it on her then the risks that may come by having it removed?! Any comments are appreciated! Thank you,

Nicole (Widow of Sean)

never, never, never give up! 

Login or register to post replies.

jax2007gxp's picture
Replies 6
Last reply 10/2/2011 - 9:55pm
Replies by: jax2007gxp, KatyWI, Richard_K, Anonymous, Beckyinsandiego

Hello friends,

Yesterday I was conducting "paper management" and discovered the mammogram order which I failed to get done this year.  It made me start wondering....would the PET/CT scan show other kinds of cancer beyond mel?  I know my scans revealed a likely thyroid issue (not cancer), so I'm thinking it could identify other hot spots where a different kind of cancer may exist.

Thanks for your feedback!

Jacki

Login or register to post replies.

Hi everyone,

Looks like some good news on this board right now which is great!  Seems like lots of people doing different variations of treatments.

 I just got my scan results from being on vemurafenib for 2 months.  50% reduction of tumors in lung, liver and bone!!  I had figured as much as I almost immediately felt soo much better!!.  We talked to our oncologist about switching to ipi once we got tumors either gone or  small enough size that we could switch over.  Original plan was wait until we saw signs that vemurafenib wasnt working anymore then switch, but now that clinical trial does not have control my husband and I are hopeful there is more freedom with the drug.    My hope was that we could switch to ipi or PD-1  while I was healthiest and then if that  didnt work for me go back on vemurabneib if needed. 

But for now oncologist wants us to be happy with results and not rush. My cancer has become agressive and he worries about jumping off drug too soon which might give current tumors or new tumors chance to grow before ippi or pd-1 had chance to work.  So for now I will be happy with my results and hopeful for the future :)

Any thoughts on this "plan" are welcome.  Also congrats to all who are responding so well to their treatments, you are all in my prayers.

laurie from maine

Login or register to post replies.

beccia1's picture
Replies 1
Last reply 10/2/2011 - 5:11pm
Replies by: Anonymous

how long does it take to get results from genetic testing

 

 

beccia1

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 10/2/2011 - 7:00pm
Replies by: ValinMtl, MariaH

While researching Dave's next step for treatment, I came across this study for MDX-1105.  I'm wondering if anybody out there is on this trial....NCT00729664 

On a side note, Dave's vision improved (after being blind for a week after IL-2) but everything still looks "dark".  He's on 80mg of prednisone and was hoping to stop taking it after his vision returned to normal, but that doesn't seem to be the case yet.  He's still unable to drive.  Even if he does end up being a responder to IL-2, he probably won't do another course.  He goes for scans on 10/25 and  sees Dr. Khushalani on the 10/26 for his results.  Who knows, maybe if he had a good response we can keep it stable for awhile and at least get Dave through hunting season without having to do any treatment.  Of course, that depends on his vision improving as well.  Ugh...

Best wishes to all,

Maria

Login or register to post replies.

kim2712's picture
Replies 4
Last reply 10/11/2011 - 4:18pm
Replies by: kim2712, Rebecca and Bob, Anonymous

Hi James,

I remember awhile back when I posted about the pain of losing my son you had said to email you if I wanted to talk. I can't find your email address. Mine is kim.hartzell@hotmail.com if you could please email me sometime.

Thank you,

Kim

Mom to Erik 6/11/1985-5/22/2011

Login or register to post replies.

JerryfromFauq's picture
Replies 5
Last reply 10/3/2011 - 3:50pm

This is a great article that discuses melanoma signaling pathways, the molecular drivers of this disease, molecular subtypes and developing proposed treatment guidelines for each subtype, including specific assays, drugs, and clinical trials. labs that conduct various tests, etc.  This information is written at a laymans level and is fairly easy to follow.

 Drug [<>] Company [<>] Status [<>] Clinical Trial [<>] Target

I have only posted the Abstract here.  The real meat is at the URL.

http://mmdm.cancercommons.org/ml/index.php/A_Melanoma_Molecular_Disease_...

I. Abstract

While advanced melanoma is one of the most challenging cancers to treat, recent developments in our understanding of the molecular drivers of this disease have uncovered exciting opportunities to guide personalized therapy decisions. Genetic analysis of melanoma have uncovered several key molecular pathways that are involved in disease onset, progression as well as prognosis. These advances now make possible classification of melanoma into molecular subtypes (unlike traditional histological subtypes), with proposed treatment guidelines for each subtype, including specific assays, drugs, and clinical trials.

This paper outlines such a 'molecular disease model' that can be used by both researchers and clinicians- clinicians could use it a guide in their therapy decisions and contribute to it with real-life patient outcomes data whereas researchers could refine molecular subtypes based on their findings and use clinical outcomes data to guide their research. This 'dynamic' paper will reflect latest scientific, clinical and technological advancements by providing a rapid process for submission, contextualization and dissemination of information and data.

I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

JerryfromFauq's picture
Replies 2
Last reply 10/3/2011 - 1:59am
Replies by: JerryfromFauq, Anonymous

This is a great article that discuses melanoma signaling pathways, the molecular drivers of this disease, molecular subtypes and developing proposed treatment guidelines for each subtype, including specific assays, drugs, and clinical trials. labs that conduct various tests, etc.  This information is written at a layman level and is fairly easy to follow.

 Drug
[<>] Company
[<>] Status
[<>] Clinical Trial
[<>] Target

I have only posted the Abstract here.  The real meat is at the URL.

http://mmdm.cancercommons.org/ml/index.php/A_Melanoma_Molecular_Disease_...

I. Abstract

While advanced melanoma is one of the most challenging cancers to treat, recent developments in our understanding of the molecular drivers of this disease have uncovered exciting opportunities to guide personalized therapy decisions. Genetic analysis of melanoma have uncovered several key molecular pathways that are involved in disease onset, progression as well as prognosis. These advances now make possible classification of melanoma into molecular subtypes (unlike traditional histological subtypes), with proposed treatment guidelines for each subtype, including specific assays, drugs, and clinical trials.

This paper outlines such a 'molecular disease model' that can be used by both researchers and clinicians- clinicians could use it a guide in their therapy decisions and contribute to it with real-life patient outcomes data whereas researchers could refine molecular subtypes based on their findings and use clinical outcomes data to guide their research. This 'dynamic' paper will reflect latest scientific, clinical and technological advancements by providing a rapid process for submission, contextualization and dissemination of information and data.

I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

ValinMtl's picture
Replies 24
Last reply 10/3/2011 - 12:48am

Well, went back to NIH with a great deal of trepidation!!  GOOD NEWS!!!  After 3 weeks, there has been 27% reduction based on the nodules studied and their diametres.  Did I get that right?  My doctor will provide me with a written report since at times like this it's difficult to understand.  I can certainly see the improvements.  My doctors tells me overall there is a 62% improvement if you do not focus on only the 'analyzed part'.....anyways I was going to wait until I had a proper written report from the doctors on Monday but I've waited long enough, I was petrified to say anything and now I will sing it to the top of the hills.  More detailed info will follow.

It is sooo nice to see something positive for a change.  To show how little is understood about this program, I had a little bit of a bad turn back in Montreal and ended up in the hospital for one day (halucinations)...one oncologist took my son (my son..NOT me nor my husband!!) aside and asked what were his intentions for his mother since she had only succeeded in 2 of 12 bags of  IL-2 and that is not success (well I've got the famous itch right now!!)...He did not take in to account the millions of good white cells (4.28 milllion) re-injected into my body nor stem cells nor radiation....Go figure.  I told Shaun to ignore his comment.

Dr. Hessman was my fellow and both Dr. Yang and Dr. Phan came by to congratulate me and apparently Dr. Rosenberg is just delighted.  They told me I am healing faster (ouuchh, my whole body aches especially the lymphedema leg still hurt) than many because of my determination and positive attitude....When I was being offered morphine and palliative radiation in Canada, I knew it was time to take things under my own wing. THANK YOU WARREN, your e-mail was such a God send and wonderful timing.  I had a date for palliative radiation in left groin within a day...I stopped it and spoke to NIH first.   IT WAS A DEFINITE DO NOT DO THAT UNTIL you see us.  Thank goodness.  If they had, they would not have been able to remove an area unafffected by radiation.  Hard qualifications all..in all..  BUT got through and was randomized to TBI side of trial same as Warren 5 years ago.

Combination treatment might be the wave of the future.  I had yervoy which I responded to very well but left behind two growths in left groin and other growths...TIL just might have killed the rest of the evil one!  One can pray.

God bless

And in honour (both past and present) of all our dear friends that fought so hard and volunteered for us to reach this new level of treatment for stage IV.   Val

PS  Warren how are you doing? I pray they have come up with a treatment for your Merkel cell carcinoma.  Val

Live Laugh Love Nothing is worth more than this day!

Login or register to post replies.

Beckyinsandiego's picture
Replies 10
Last reply 10/2/2011 - 8:57pm

My original melanoma was back in 1999 and since then I have had 4 recurrences. I am Stage IV and have activity in my sternum. My doctor wants to put me on Ipi and I was hoping to hear from fellow melanoma warriors out there about their experience with Ipi. I would like to hear success stories of course but I know that it does not work for everyone. Please share your story with me if you can. I know I am going to beat this disease like I always do. Keep positive because it is over 1/2 the battle.

Take Care of Yourselves

Becky from San Diego

Login or register to post replies.

djpayn's picture
Replies 6
Last reply 10/2/2011 - 9:18am

Just got my results back and am happy to say that i am now 3 years NED!! and i want to thanks all of my friends for being there for me when i was just starting this journey and all the times since. I really feel i couldnt have made it without all of your support, friendship, and kindness!!

 

Its been a tough year, so many have left us. They will all be missed dearly and remembered fondly.

 

smiles and hugs****

 

dawna

Login or register to post replies.

Pages