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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Lisa13's picture
Replies 1
Last reply 11/8/2011 - 4:25pm
Replies by: jim Breitfeller

Hi Jimmy,

First of all, my first scan after Yervoy treatments showed 50% regression in my lung mets - including some that are gone. 2 grea just a tad, but we'll see how those look on November 30th when I get my next scan. It could very well be inflammation.

Bad news - I got 2 brain mets while on ipi or before (small). My last brain MRI was July 28th, so I have no idea how long these have been sitting there. A couple of Dr's in the U.S. have claimed that people who have success on ipi may get brain tumours which get removed and not come back for quite some time.  Do you know anything about this?  I have 1 brain met that has bled and is now absorbing - we can't even see the tumour at all on an MRI and my oncologist is starting to wonder if it may be ipi that  has done this. Does ipi cause bleeding in tumours? 

Anyway, I'm really hoping my lymphocytes are in my brain now trying to keep anything more from growing. It's hard to believe that I can have so much success and then get these buggers to ruin my excitement.

Lisa

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

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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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I am so sad I can barely write but I need help fast.  I grew 11 new tumors in eight weeks while on the IL2 including two new 3cm tumors in liver, many in pelvis, lung, back head, not brain...  They are now fast growng and I am deciding whether to try GSK2118436 trial study or Vemurafenib or do nothing. 

The Ipi and IL2 did not work for me.  I am signing a contract today for a new condo.  If I do any of these treatment options will I be able to be on my own.  I have many friends and family who will look in on me but how have the side effects been for any of you?

The trial study team was to call me for an answer yesterday and I still cannot decide what to do.

Has anyone been on GSK 2118436 trial?  How were your side effects, day to day living and did you respond?

Please write me back.

Gracie

cancer is in my life, but is NOT my life

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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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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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AlisonC's picture
Replies 17
Last reply 11/7/2011 - 3:25pm

Hi fellow MPIP-ers....

I feel like I've been waiting so long for this moment and I know how helpful it was to me, when I was newly diagnosed at stage III, to hear good news stories. I'm aware that there are a lot of people struggling at the moment with stage IV (I have a good friend who is also) but good news also has a place here and I'm grateful to be able to share mine.

I got my 10 year scan results yesterday....brain MRI, whole body PET and a bunch of smaller things.... All NED.

I am thrilled and I know I owe a lot of it to the support I received. Thanks to everyone here for being part of that.

AlisonC
Stage IIIB
NED since 2001

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jmmm's picture
Replies 6
Last reply 11/7/2011 - 12:26pm

Does anyone know of groups that help financially with families dealing with melanoma? My husband had to stop working last month, after his cancer progressed in his brain and elsewhere. I temporarily quit my part time job to juggle his care, appointments, etc. We're looking for help with normal bills, copays for dr. Visits, copays for medication, or help with health care premiums. Any thought? The AmericanCancer Society didn't have any help.

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shellebrownies's picture
Replies 31
Last reply 11/7/2011 - 12:18pm

I am sorry to report that Don was called home to heaven late Tuesday night, November 1st. He passed peacefully, surrounded by his loved ones.

May God bless each and every one of you, whether warrior, caregiver, or loved one no matter what part of the journey you are on. Hoping you each have your own personal miracle.

 

I will still be on here, but I may need to be away for a little while or I may be on sporadically for a bit. 

 

Michelle, wife of Don always.

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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fenny's picture
Replies 12
Last reply 11/7/2011 - 10:46am

     HI all! I'm a Chinese from Fujian Province, the southern part of China. My sister was diagnosed with Stage I mucosal melanoma back in Dec 2009 and found to have advanced to Stage IV with PM (pulmonary metastasis)  this August. So far, she has gone through two surgeries and 13 cycles of chemo therapy. She has been on the following medication (said to be outdated by Catherine) from August  till now. 1. TMZ0.3g d1-5  2. Sorafenib 400mg BID (for PM)   3. Bevacizumab, Avastin   300mg q2w;q4w   Early last month, she went to Beijng for the third time for her treatment and her doctor said one lymph node in her left lung seems to go away and another one in her right lung seems to shrink. But I just wonder if the lymph nodes can go away so easily and start to doubt the PET/CT result. Did they make a mistake when doing the scan or when reading the scan result? The medical standard here in China is comparatively low and there are very few melanoma specialist except one named Guo Jun in Beijing Tumor Hospital. As melanoma patients all over China flood into Beijing to turn to Guo Jun for help, he is very proud and puts on airs when treating the patients. My sister went to Beijing 3 times and not until the third time did she see Dr. Guo in person at his office.  He translated a book titled "The Prevention, Detection and Treatment of Melanoma", written by Catherine, M. Poole, a 22-year survivor of cutaneous melanoma and founder of MIR (Melanoma International Founation). I called Catherine 3 weeks ago and she was very patient with my questions on the phone. She recommended me first ipilimumab (approved by FDA this March) and then anti-pd1 (a new clinical trial medicine). No idea whether you guys have heard about anti-pd1 and anyone is now on anti-pd1. Please let me know if you are and at what places in USA can patients have access to this new clinical trial. Catherine said that Dr. Guo Jun's Rx fails to keep up with the latest development in melanoma treatment, which freaks us out and takes away our confidence in the most authoritative doctor in China. sadThat's why I come here to seek more info from you all.

     As I mentioned above,  I doubt the result of my sister's PET/CT, i wonder if you know any doctor who's willing to read my sister's PET/CT scan she had in August. Sorafenib, a targeted drug for her PM, is kicking the crap out of her and killing her. I wonder if it is necessary for her to take this terrible untolerated drug if she doesn't have PM at all.  So please help find us a doctor to read her PET/CT scan. Thanks a lot in advance. BTW, a stage IV melanoma patient left me a message saying that he is now on pazaponib, a clinical trial at  Chao Comprehensive Cancer Center in Irvine California. It has stopped his progression for 14 months since he was discovered to be in Stage IV. Does anyone of you know about this new drug and is now on this drug too? Please let me know. This patient also mentions that he's taking high doses of resveratrol and green tea extract. Do you take some supplements to help stop or slow the progression. Please keep me informed. Thanks.    Our family is now in great confusion, not knowing whom to turn for help and how to continue my sister's treatment. Please offer whatever advice and help to  prolong my sister-in-law's survival. I really wish a miracle would work on her.  Many Thanks to You All!

 

 

 

 

    

    

  

 

Make Each Second Count!

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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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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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Amy Mason's picture
Replies 3
Last reply 11/7/2011 - 8:49am

Hi,

We are looking for young melanoma survivors/patients in their 20s and 30s to share their personal stories at New England based High Schools and Colleges during our Your Skin Is In program aimed at keeping teens out of tanning beds.  If you are interested in volunteering in our Speaker's Group please contact me at amason@mfne.org or 978-371-5613.  We'd love to have your help.  For more information about our Your Skin Is In program visit http://www.mfne.org/public/events/yourskinisin.php.

Thank you,
Amy

Amy Mason
Event Manager
Melanoma Foundation New England
111 Old Road to Nine Acre Corner, Suite 1005
Concord, MA 01742
p 978-371-5613  f 978-371-0109
email amason@melanomafoundationne.org
web www.melanomafoundationne.org

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