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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Charlie S's picture
Replies 6
Last reply 11/12/2011 - 7:18pm

Spoke with Jerry this afternoon.  He bled out twice over the weekend and had to be revived both times and is stable right now...................a DNR for this guy is Do Not Retreat.

He has a super team in Boston that are on him like scum on a pond and he is responding.

To clarify, he has both complications from melanoma and complications of treatment. Right now, his team is working to stabilize the cascading complications of treatment and actual treatment of disease is probably about another week to ten days out.

For those of you that are unaware, Jerry is the poster boy for ipilimumab in Boston. He was one of the first to get it in development trials before mergers and aquisitions and is one of very few long term documented cases that can be measured not in days, weeks or months, but now years.

He has also been a contibuting voice at the New England Melanoma Foundation throughout his travails. 

Quite the guy, please keep him in your thoughts.

Cheers,

Charlie S

 

 

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I am so angry right now. Just went to the doctor to find out which immuniotherapy my mom will receive for her stage 3C melanoma. The doctor told her that her only option is Interferon. She was hoping to be in the Yervoy clinical trial. Apparently, she is missing the opportunity to be in the clinical trial by 5 days. She receives all care & treatments at UT Southwestern (in Dallas, TX). The immuniotherapy should have been coordinated with the radiation so that she did not miss the window of acceptance into the clinical trial. 

She is going to start high dose Interferon next Monday. 

I feel like she was not afforded EVERY opportunity to be in the clinical trial. If the radiation had started 5 days earlier or ended 5 days earlier, she would have been in the clinical trial. I feel so angry right now.

Anyone else have a similar situation?

"Trust in the LORD with all your heart and lean not on your own understanding." ~ Proverbs 3:5

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Just found this video on PD-1.  It's the Curetech version starting in trials.  It's a little commercial, but good information. 

http://www.curetechbio.com/?TemplateID=29&PageID=181&TemplateType=14

The circumstances of our lives have as much power as we choose to give them. David McNally

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Just found this video on PD-1.  It's the Curetech version starting in trials.  It's a little commercial, but good information. 

http://www.curetechbio.com/?TemplateID=29&PageID=181&TemplateType=14

The circumstances of our lives have as much power as we choose to give them. David McNally

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premedy's picture
Replies 6
Last reply 11/7/2011 - 4:43pm

Does anyone have any info,date, articles referring to the possibility of receiving a long term response from ipilimumab.  More specifically I am looking to see if it is possible for a  person with Stage IV Metastatic Melanoma who received a response from ipiliumab and is now NED to live for more than 3 years without reccurrence.  I know it is a relatively new drug but it has been in trial since 2006 so was curious to see if there is any data or anything supporting the possibilty of a long term response to ipilimumab.  thanks!

pat

"without the bitter the sweet ain't so sweet"

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Replies by: washoegal

I'm a stage IV melanoma patient who had original diagnosis in 2002 at stage 1b, and went to stage IV in November 2010.  I have two large tumors in my lungs, one in the hylum of my right lungs and one in the subcarinal region .  I tried carboplatim and paclitaxol in Jan-Mar, then two rounds (two cycles each) of IL2 in May and August.  The chemo only slowed the growth of the tumors for a few months.  The IL2 shrunk the tumor in the subcarinal space by about 40% so far, but only stabilized the growth of the tumor in the hylum temporarily.  It's growing again slowly which is very frustrating.

While I'm considering next steps, I'm intrigued by the NanoKnife but don't see any other posts on the board about this.  It uses irreversible electroporation to "melt" the tumor cells, but leaves other normal cells unharmed.  Unlike cryo or other ablation technologies, it leaves no scar tissue.  It seems like a great way to reduce or eliminate the tumor burden where my energized immune system is still not effective enough.

Two US hospitals with nanoknife experience (Baptist Health in MO and Beaumont in MI) have told me I'm not a candidate due to size and location.  A hospital in Australia has indicated that it would take some work but that they can successfully ablate the hylum tumor.

I'm wondering if anybody has seriously considered this technology or has used it to reduce tumor burden.  I've read several articles and seen the YouTube video from Shand at UF, but would appreciate some first-hand experience or the knowledge of others in the forum.   Thanks in advance.

Curt

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bball's picture
Replies 2
Last reply 9/4/2013 - 11:19am
Replies by: kreedkall, ccbreeding

has anyone tried Zadaxin and/or Low dose naltrexone to boost the immune system

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prh126's picture
Replies 3
Last reply 11/8/2011 - 6:19pm
Replies by: Jim M., washoegal, prh126

Diagnosed with Stage 3A am trying to find a clinical trial - many trrials require that my inhaled corticosteroid prescriptions for asthma allergy be discontinued.  I guess my question revolves around the use of the corticosteroids if I don't get into a trial - will their continued use inhibit / suppress the immune system's ability to "fight" any possible lingering mm cells ?  

Thanx - Paul

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Phil S's picture
Replies 7
Last reply 11/8/2011 - 10:34pm

Phil and I are headed to MD Anderson this week for our first appointment on Thursday, so if anyone is around and wants to grab tea/lunch please let us know. I think JanOC and Robyn44 might be around, if we overlap days and can get together great! First time to Houston, so hope it goes well and we get offered some effective treatment. Leaving our two young children at home, so a little stressful and sad, thank God for family members who Love them. We would love to connect with other warriors in the fight, our recent battle with brain mets has been scary, but currently manageable. I take iPad so will check emails daily, pvjssim@aol.com. Blessings to all, Valerie (Phil's wife)

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Jan in OC's picture
Replies 7
Last reply 11/8/2011 - 7:10am

 

Well, we have had a wild ride here in Houston.  Just to update, in late August, Dirk had new brain mets & they were growing very fast (not clustered , but all over the brain).   First, surgery to remove the largest tumor, followed by 3 weeks of healing.  Early September was Bio-Chemo round #1, then 10 days of WBR immediately after chemo. After 5 days of recovery, another round of Bio-Chemo in mid-October.  After two weeks of recovery, the "dreaded" CT and MRI on Nov 1st.  

We met with Dr. Papa on Wednesday to review. Good news is that "most" of the tumors in his liver and lungs have not grown any larger since the start of bio-chemo.  BAD news is that none of the tumors are shrinking. The disappointing news is the MRI shows that he has several brain mets that have gotten larger.  We are waiting on MD radiation team to (hopefully) schedule Gamma knife on those.  

Dirk has some memory loss (almost like early alzheimers), reduced hearing in both ears and reduced vision in left eye.  We are hoping that some of his side effect will get better with time.  It is difficult to know what is chemo brain, craniotomy or from WBR.  

Papa has told us no more Bio-Chemo right now. He feels it is not worth it as there was no benefit (shrinkage).  He proposed starting him on Abraxene(?).  He also told us that the TIL's are no longer an option.  What to do? Don't know what (if anything) is left to us.  Anyone with suggestions? Words of Wisdom?

We have tried Interferon, done trials with BRAF, IPI and E-7080, and now Bio-Chemo (mixed 5 drugs including IL-2 and temodar).  Have had SRS, WBR and Craniotomy for Brain mets.  His tumor burden just keeps getting heavier.  We received the "talk" with the NP regarding quality of life VS quantity.  Dirk was surprised that it came up.  He did not think we are at that point.   

We are going to de-stress and just live this week!  Maybe take a drive to Galveston to see the Gulf (Dirk has not been there yet). What is there to do around Houston that will not use up a lot of his energy? Suggestions for fun are welcome.

Jan, wife to Dirk stage IV

 

 

laughter is the best medicine

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lhaley's picture
Replies 12
Last reply 11/15/2011 - 8:04pm

There have always been a few new at a time that have developed brain mets.  These last few weeks there seems to be many that have posted lately.  Unfortunately even during these short weeks Don has not only developed mets but also has passed. 

Some of you are already doing great! Some have had brain mets in the past and doing well.  Some are struggling.

Post and give a little info so that we can gain infor from you.

Linda

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nickmac56's picture
Replies 3
Last reply 11/7/2011 - 9:33am

My wife is recovering from her brain shunt surgery. With a bit of luck maybe she can go home tomorrow or Tuesday. Still have some work to do to get her off a catheter (so she needs to be able to walk a bit with support) and IV medication. Half her head is shaved (even though it was pretty short already from previous surgery and radiation) but she doesn't care too much given she is going to lose it in the next couple days from the prior chemo or when the WBR starts. There is some tension between the neurosurgeon and the radiation oncologist about when to start the WBR - it is scheduled for this Tuesday but the neurosurgeon wants to wait a bit longer to let the surgical site heal. She has douple vision which we hope resolves now that her brain is buoyant instead of being pushed down on her optic nerve. She is understandably sad that she cannot have chemo anymore (can't do chemo and WBR at same time and the chemo isn't going to work on her spinal fluid cancer) and hopeful the WBR buys her some time without impinging too much more on her cognitive capabilities. 

I wish there was something else we could do, but we are really at an end to treatment and now it's about palliation. That means it's all about pain control. And balancing pain control with nausea. It's been a challenge here in the hospital - with IV delivery - be interesting to find out how I can manage with oral meds.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Lisa13's picture
Replies 8
Last reply 11/7/2011 - 12:11am

Had 2 days of deep depression, but I'm putting that behind me and remaining strong and hopeful.

Even though I finished Yervoy 3 weeks ago and have 2 small brain mets, my lymphocyes as of this week were still high, so I'm really hoping they're going to help keep the micromets away in my brain and everywhere else. I'm a great responder to it, so that has to say something.

I sent an email to my team of Dr's and asked to put WBR on hold and just gamma knife the one that's easy right away.  They either have to figure out how to get the blood away from the other tumour or just get it out somehow. I'm saving WBR until I've got much more than 2. You can either be lucky that it doesn't come back for a while, or unlucky that it keeps coming back. I spoke to someone whose been dealing with 14 brain mets for 2 years!!!  SRS on all of them - there is hope people!!

2 Things - does gamma knife get rid of small tumours right away or does it take time?? For those who had blood in 1 of their tumours, what did you have done to eventually have it removed?

Lisa

 

Many impossible things have been accomplished for those who refuse to quit

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Replies by: Anonymous, BrianP, JerryfromFauq, BarbieGirl, bradcope1, Karin L

It would appear that the general approach may be viable.  The question is "Is it to the point that the viruses to be used are undertood and modified and will hold to the changes made to them without joning with the host genetic material and causing extra problems.  The following articles provide some  info as to the current state of this approach.  The last article I list is from the Lativian Center that has been working on this area for over 40 years.  They have a treatment called: RIGVIR.

This general approch is under investigation at some US centers.

 

http://biotech.about.com/b/2009/01/19/cause-for-caution-in-virotherapy-r...

[http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=...]

http://www.nature.com/cgt/journal/v9/n12/full/7700535a.html

http://www.jci.org/articles/view/41431

http://www.thedenverchannel.com/news/22425106/detail.html

    HERPES IN CANCER TREATMENT: Researchers at the University of California, San Diego are testing a type of immunotherapy for melanoma using engineered herpes viruses. Using a needle similar to that used for the flu vaccine, researchers inject the herpes virus into a melanoma lesion. The idea is the presence of the new virus alerts the body's immune system to attack the cancerous area. Daniels said the virus is engineered to be safe for non-cancerous cells, and the idea of using viruses to fight cancer has been around for hundreds of years.

http://www.ncbi.nlm.nih.gov/pubmed/18226503

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

http://www.latvia.travel/en/oncology-%E2%80%93-cancer-virotherapy

RIGVIR – for now the only preparation containing a live natural virus with oncotropic and oncolytic qualities or the ability to find and destroy malignant cells. It has passed all phases of clinical trials and has been registered in Latvia (reg. Nr. 04-0229), available in Latvia's pharmacies"

I would like to know what the actual trials were and the fatual conlusions drawn by reputable Oncologists.  Would like to have a trial conducted on the RIGVIR thru the FDA. or at leat thru some of the majjor USA Cancer Centers.

 

 

 

 

 

 

 

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

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heg50heg's picture
Replies 3
Last reply 11/6/2011 - 12:26pm

Today has been 1 year since I have been diagnosed with stage 3 melanoma. My Dr. says the first two years are the most serious times that melanoma can return, or at least that is when you are the most at risk for reoccurance. Any feedback on that would be appreciated as the oncologist I am seeing is not a melanoma specialist but a general practicioner of all cancers. So that is what I am wondering if after the first 2 years does my chances of advancing to stage 4 go down or what.

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