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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Karolina's picture
Replies 4
Last reply 11/9/2011 - 9:29am
Replies by: Karolina, Hereiam, Janner

Hi,

since I have found out that my friend has a nodular melanoma, i started to be more concerned about myself as well. I have quite a lot of moles on my body and I was wondering whether it would be good to remove any of them which are kind of the biggest or the most "different"? Would removing moles prevent potential develop of melanoma?

I saw a melanoma specialist last week and she didn’t suspect anything at the moment. She referred me to the photographer as she thinks that this is a good way of monitoring my moles: to have some pictures of my moles as a base for comparison of any changes. Sounds sensible… However, I was wondering if by removing two moles which I have on my back and which are prominent would be something right to do?

your views are very welcome

k.

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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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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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Karolina's picture
Replies 3
Last reply 11/9/2011 - 4:58am
Replies by: Karolina, Anonymous, Janner

I wonder if you can help me. It is almost a week since my friend had SNB. Her wound under arm is swollen. Is it a normal reaction? Is it related to the cancer or to the surgery?

thank you for your help

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Lisa13's picture
Replies 3
Last reply 11/9/2011 - 3:07pm
Replies by: Lisa13, momof2kids

First of all, I wish you the best of luck with your scans coming up.  There may be incredible news that your tumours are shrinking.

I wanted to ask you about your brain met. Did you have the one remain in your brain because it was bleeding and when it stopped, two areas were gamma knifed?  The reason I ask is because I decided against WBR right now. The radiologist suggested I wait 3 weeks, have another MRI to see if the blood is gone and then gamma kife both. He doesn't think they will grow much bigger in the next 3 weeks as they've been there for awhile and likely bled a week or 2 ago. They can't even see a tumour at all because of the blood, but they expect it's small like the other one.  What were your Dr's thinking if your bleeding didn't stop??

It sucks that ipi worked so well on me, but I grew 2 small brain tumours sometime between the end of July and now.  I'm still hoping that the army of lymphocytes can still crawl into my brain and stop anything further from growing for a long time.

I feel good things for you :)

Lisa

Stage 4 - 50% reduction in lung mets - most even disappeared - 2 may be inflammed

2 new brain mets since ipi, but nowhere else

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

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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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dearfoam's picture
Replies 5
Last reply 11/9/2011 - 12:24pm
Replies by: dearfoam, deardad

Took dad for his CT scan (chest/ abs/ pelvis) this monring and got the results before lunch. I did not ask for a paper copy today; just plain forgot.

Doc says unfortunately the chest tumors showed about 10% growth and the oters in the abdomen and pelvis showed even more. The spleen in particular is up to 3.3cm from 1.9cm in late August (last CT scan). The spleen met was discovered in late April so it has only grown - in fact the best we ever heard about any of the chest/abs/pelvis mets was "mild" and "stable" over the summer. The others include one on colon, one on left adrenal gland, others scattered about here and there.

So for the good news: Since dad has been on Temodar since early May of this year, the doctor said it is time to move on to Zelboraf as his BRAF results had FINALLY come back conclusive, and positive for the mutation. The test was for one of his moles removedin October. However we still do not know if there is going to be a response because it appears he has had more than one primary melanoma, and they might be different from one another. There are a lot of variables! Testing his brain, lung and spleen mets was deemed too risky, by the way, so we are banking on the BRAF gene form this mole matching the other mets.

Of course the next MRI isn't until December, so will have to wait on that, and by then hopefully we will see some shrinkage upstairs. 

And frankly, this was a long-wait-but-way-too-quick-consult today. I even brought a typed list of questions and a letter to the doctor's office before the CT scan (3 hours before we saw Dr.) so he could go over some more sensitive issues with dad, man to man, but it appeared that he had not read it or just plain ignored my request. I saw it in his hands, but it looked to tidy to have been read. I am telling myself there were more pertinent issues distracting him today.

I am still having trouble having to remind dad he is not mentally or physically in shape to do some things he woudl like to do, such as hop on a plane across the country or go back to working out of town living in a hotel without any help. I know it sounds bad to have to discourage him, but he is just too oblivious to his wellbeing/safety and symptoms and the level of care he needs and receives. I really needed the doctor to help, but maybe he will at the next follow up in three weeks? If not I might try to schedule with the Supportive Care clinic, but hearing things from the more authorative Oncologist is probably most likely to be effective or sink in.

We applied for assitance with the Zelboraf, and either way should be getting it by the end of the week. I hope he will be approved - all these drugs are so expensive. I am also curious how severe the side effects will be as he had very few side effects from Temodar - just some fatigue and diarrhea. He will be goign to stay with my sister for a week and a half starting next Tuesday, and I hope we have side effects figured out before that!

Thanks for your input,

DF

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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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