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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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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Gracie's picture
Replies 6
Last reply 11/8/2011 - 8:36pm

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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lizzykittycat's picture
Replies 5
Last reply 11/8/2011 - 8:17pm

so, currently i am at stage 3a with 2 dissected sentinel nodes with micro mets (scattered in one and clustered in the other).  my surgeon at the njcc recommended proceeding with the removal of the rest of the nodes in that area.  he stated that i would have a 20-40% chance of lymphedema after the surgery that i will have to live with for the rest of my life.

yesterday, i saw dr. coit at mskcc in ny.  he seemed to have a bit of a different recommendation.  although he didn't say NOT to do the surgery, he presented some facts that really caused me to start to rethink whether or not to have it.  he played up the struggle that i would have with lymphedema.  he also stressed the fact that it's unlikely that the remaining nodes with be cancerous (20%).  he offered the option of entering a trial that randomly decides if you have the surgery or if you monitor closely. 

i'm having a VERY difficult time making this decision.  i'm leaning toward having the surgery, but am also terrified of having a swollen leg forever.  :(

has anyone been in this position?  if so, which option did you choose?  can anyone tell me if they experience lymphedema and to what extent it limits their life?

i have at least a month before my next surgery while my excision wound heals. 

i'd appreciate any insight.  have a great weekend.

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Bubbles's picture
Replies 8
Last reply 11/8/2011 - 6:26pm
 
This site provide good basic infor on the topics listed about.  C
 

chaoticallypreciselifeloveandmelanoma.blogspot.com

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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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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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