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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Anonymous's picture
Anonymous
Replies 5
Last reply 2/21/2012 - 11:47am

Were you told benign mole or minimally atypical and turned out it was actually malignant?  VERY frustrated.

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This post has been in the works for five years. It is with my tenacity and help from researchers around the world I am able to present this paper. It is still in draft form but I thought was important enough to just get it out there. It may be to technical for the average person/patient but, it is well worth downloading and presenting to your oncologist and or medical team.

The gist of the paper is we have responders and non-responders to therapy. WHY?? with the help of Four on the most influential researchers in the Melanoma field, Dr. Craig Slingluff, Dr. Thomas Gajewski, Dr.Kingston Mills, Dr. Jim Allison and others, I was able to put some puzzle pieces together to tell a story. A story that may just save your life

In short, the non-responders may be/are missing the "Danger Signals" inflammatory Cytokines. Why, because their tumors are most likely harboring M2 phenotype macrophages (TAMs) Tumor assisted Macrophages.

But these TAMs have plasticity. This means they can change phenotype based on their miroenviroment. With some coaxing they can be change into M1 macrophages which in turn actiavate the T-cells. This means the patient needs to have therapies that promote M1 and Th1 cells. Well both Dr. Allison and Dr. Mills have discovered ways to do just that.

Please take some time to download and read this historic paper. It just may be the game changer for cancer.

 https://www.box.net/s/mzxb1b2o0tue44a3z3xo

 

I am going end with one slide.

 

 

“It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change.”

~Charles Darwin~
Take Care,
Jimmy B

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deardad's picture
Replies 4
Last reply 2/13/2012 - 3:56pm

Hi just wondering for those on Zelboraf....once you have reached your 5th cycle do you then have a scan in 3 months? I find that weird considering the median response is 7months? My dad in Melbourne will now be scanned at the 8th month unless they feel something by physical exam.

Hate Melanoma.....

Keep fighting.

Nahmi from Melbourne

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HelperDaughter's picture
Replies 5
Last reply 2/21/2012 - 11:46pm

Just an update.  we took my mom to hospice today.  history: spot removed in 2003, diagnosed at stage iv in June 2011 by a bump under the biopsy site and a bump in her lymph node.  Turns out it was in both lungs, her small intestine, and her brain (in addition to her lymph node and leg).  All under 3 cm.  She had SRS for a < 1 cm lesion in her brain in the fall, then a craniotomy in December for a brain lesion that was bleeding.  She was bleeding internally from the small intestine tumor, needing 2 units blood weekly, and was risking an obstruction, so she went ahead with a bowel resection January 5. 

I never imagined my mother would never come home.  She suffered so many horrible complications following the bowel surgery.  my understanding is that she developed a bowel leak/fistula so they had to put a drain in and she wears a sac that drains out her bile.  They were unable to fix it despite two endoscopic procedures that are apparently cutting edge at SK (they go in endoscopically and put in these high tech clips that close the tissues and dissolve after the hole heals).  totally neat (if it worked).

she received the most excellent, caring, compassionate care at SK.  i cannot recommend it highly enough.

Anyway, we had scans this week that showed that the cancer recurred in the brain at the spot where it had been before, as well as multiple other spots in her brain, and also went to her stomach and adrenal glands, where it had not been previously.  SK docs told us they would do whatever we wanted to do, but we knew it was time.  my mother expressed two weeks ago that she did not want any more brain surgery, and WBT is crap, from what i understand.

 the new brain mets are what's going to kill her.  she's not all there anymore, and this has happened within the past week to week and a half.  the doctor told us that in essence, because the tumors were in the frontal lobes (bilateral) she was essentially experiencing a lobotomy (i was a little surprised he used that word but hey, i guess it gets the point across).  she can answer yes and no questions (are you in pain being the most important one) but is totally iffy on other stuff.  she recognizes us and can tell us she loves us, for which i continue to be grateful. 

i feel a little weird.  i seem to naturally fall into talking to her as though she's a three year old. she doesn't answer anything other than yes or no questions.  she *seems* to like it when i will say a funny rhyming phrase to her, and she will say it back.  for example, we were talking about it snowing today and i said, "oh no, look at the snow" kind of to myself, just to be silly.  I then turned to her and said it and her face all lights up and she repeats, "oh no, look at the snow." 

eh.  cancer sucks.

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Jeff&#039;s Mom's picture
Replies 20
Last reply 3/14/2012 - 12:04am

Jeff will start IL2 on Monday.   Thank you to all who responded to my previous post.  Each reply lifted my spirits and renewed my hope that Jeff will be a lucky responder!!  There is so much support and knowledge on this board - just amazing!

I am interested in the anti-PD1 drugs out there - what is the difference between the MDX 1106 and the MDX 1105?  Molecule size??  Anybody know?

I also watched Dr. Weber's webinar on TIL...anyone done TIL? Very interesting and also the combination of Yervoy and anti-Pd1 might be a viable option as a clinical trial.  This is a Phase 1 trial with escalating dosages.  Anyone know what the usual dosage of anti-PD1?

Any info would be greatly appreciated - thanks again,

Jeff's Mom

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Maxximom's picture
Replies 2
Last reply 2/10/2012 - 7:20pm
Replies by: SteveBMe, yoopergirl

Today I got in touch with the Medicare coodinator and found out that NO approval is needed if you have "original Medicare" and NOT Advantage plan and that I was told incorectly that I was not "approved" and should have had my first Ippi treatment yesterday. Somehow the Nurses and doctor had the wrong infomation and communications were messed up. I don't know who was at fault..but it is over and after I gave her a pretty strong lecture about better communications.. I was able to schedule my first treatment for Monday...hoppefully all will go without a hitch. I have both Medicare and a Medigap policy.. this mess should not have happened. Please be proactive people!

Joan

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Anonymous's picture
Replies 16
Last reply 2/12/2012 - 3:18pm

Hi ! Thank you all for being here and sharing information .I am glad I found this forum.

I was diagnosed with melanoma Breslow 2 mm and Clark's II , margins clear on my right breast last month. I am worried my doctor said  My wide excision and SNB will take plase in march only ( will be 3 months since mole removed!!!!!!) Is it normal or it will spread all around my body during this long time???

And another question - I know Clark is ot so popular ow ,but ayway it does mean something and how is it possible to have such a thick ( 2 mm) melanoma and only Clark's level II ?????

Do I have any chances to survive that??

I am only 31 ,newly married and wanted to have children .

Thank you for all your support and I wish you all the best

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natasha's picture
Replies 9
Last reply 2/12/2012 - 10:18am
Replies by: Lauri England, SteveBMe, natasha, Minnesota, Anonymous

I am so glad I found this website. I was diagnosed with melanoma last month .I am 31 ,I still don't have children and I wanted a child. No looks like everything is ruined.. Please , answer if you know - do I have chanse to survive with 2 mm thick melanoma and Clark II , margins clear on my breast? I cannot sleep and I lost my hope..  I am in UK and doctor said I will have my Wide Excision and SNB only next month (they are busy0,so it will take 3 months since mole removed !!!!!!!

I do know Clark's not so popular now ,but anyyway it does mean something and I cannot understand how is it possible to have such thick tumor (2 mm) and only  Clark level II?

Please ,colud you reply on my post with some information ,.

Thank you for beeing here and sharing your stories.

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SteveBMe's picture
Replies 9
Last reply 2/10/2012 - 10:14am

Good evening all.

Well, it is now officially 8 years since my last recurrence (February 10, 2004 since my last surgery), and I cannot tell you how good it feels.

I remember coming here (the old BB format) in the middle or end of February 2004, to tell how I barely made it through my last surgery, and how sure I was I would be dead in some 18-36 months.

I just had my latest, now annual, scans-- whole body PET, and an MRI of the brain. I received the reports in the mail yesterday, and I am clean!!!!!!

In talking with someone at the local diagnostic radiology clinic the other day, they told me that more and more people are living longer, and actually surviving this nasty hate-monger-- MM.

While I've yet to meet any of them, it sure is nice to know....

Hang in there.... Hope exists.

Jesus lives!!!

Follow Jesus. That way, even if you do die, you'll live forever in paradise with the One Person who loves you enough to have died for you, and rose to conquer death so we can be justified before God.

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Maxximom's picture
Replies 2
Last reply 2/9/2012 - 4:21pm
Replies by: Maxximom, washoegal

I was supposed to have my first Ippi treatment today. I reported to the James Cancer Center early and found out that Medicare still had not approved my treatment. I was really furious that no one called me to cancel yesterday or this morning. They were very appologetic and rescheduled foor next Thursday. I was so geared up for today's treatment. I felt so bad that my daughter dropped me off and then had to come back to get me. Another week of waiting while this monster grows inside of me.

Joan

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annem's picture
Replies 5
Last reply 2/11/2012 - 8:14pm

My husband was first dx in 1998 with brain tumor treated with 15 rounds of WBR.  After a second brain tumor, stomach tumor, lung tumors, 4 rounds of biochemo and gamma knife, he has been cancer free since 2003.  He was diagnosed with radiation induced dementia in 2005 and had a stroke in 2009 which left him unable to walk without a walker and unable to talk.  He is only 58 years old.  About two weeks ago he began holding his head as though he was in pain and he has lost about 25 pounds since mid-December.  An MRI yesterday revealed no new tumor activity but an abnormal thickening of the brain at the back of his head.  The neuro is sending the MRI to the onc but tells me right now he is calling it an abnormal thickening of the dura - he says it may or may not be new disease.  He asked me if I had thought about hospice.  This has thrown me for a loop.  Although my husband has been unable to talk and had obvious comprehension issues, he knows me, he knows the kids, watches his beloved Okla State cowboys ... I told the doctor my main concern is that he not be in pain.  I'm not sure what this means but didn't know where else to turn.  I haven't posted here in a number of years but I always got great comfort in the discussions and suggestions.  Hopefully, someone will have dealt with this issue and can offer some advice.  Thanks.  AnneM, caregiver to husband, stage iv

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emilypen's picture
Replies 11
Last reply 2/10/2012 - 5:21pm

 

Just wanted to check in to announce the birth of our son Jamieson . Feb 3rd at 11:37 am via c-section ( baby was breech. 6 lbs 12 ozs at 37 weeks and 1 day.

Hospital was amazing in accommodating my husband with his wheelchair and my mom and caregivers... he got to be in the OR and held the baby before I did!

It seems like Jason has been saving all his energy to make it to the delivery date and now he is relaxed and letting nature take it's course. I'm sure it won't be long now but im so happy i got to share the last 5 years of my life with and that we got to create a new life together.

Emily

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justlittleoleme's picture
Replies 2
Last reply 2/10/2012 - 8:10pm
Replies by: fdess056, rbruce

My hubby finished his fourth ipi induction infusion yesterday.

The tumor testing came back and he is braf wild type.  Help me know what this means to us.

I think it means that there are no immunotherapies out there now that would help.  He has scans again on the 24th of February.

They are keeping watch on something in his left parotid now.  It is currently 6mm.  They aren't sure what it is.

Of course, they tell us the likelihood that he would get melanoma bilaterally in his parotids is highly rare.  I think that is where we live!

barb

We don't know how strong we are until being strong is the only choice we have.

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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eerye70's picture
Replies 8
Last reply 5/31/2012 - 1:46pm

Panic, insanity, anger, fear,  I have been through so many emotions these few months I don’t know what to say.

In the fall of last year, I had a small mole on my right shoulder. I had it since I can remember. It got darker. I got worried and scheduled an appointment with a dermatologist. I have moles all over. My mom has moles. I am just speckled. I also have to say, as a teen, I totally did the sitting out with baby oil and iodine for the perfect tan. I didn’t do tanning beds until the last two years. I have several scars on my stomach and I wanted them to fade into one shade. So I did insane tanning, daily, 20 minutes for about 3 months total out of the two years. Back to fall. I went to the derm. He took one look at it  and said, oh yeah, that has to go. They cut it off and sent it to path. He said, its most likely nothing, but we send it to pathology and I will see you back in two weeks. Then I left. I went home and began to hit the internet. I found this site and began doing research. My mole was larger than an eraser, irregular borders, irregular coloring, and evolving or changing. I couldn’t believe that I had just ignored this thing for years. Literally for years. I had noticed it, thought about it and just went on my merry way. For years.

Well, the dr calls and says, come in to see me. Of course, you know. You don’t get a call for nothing out of the ordinary. I guess the good news is that it is in situ. That for all my putting off, it is supposedly been caught at the surface, most superficial level. But they don’t know, and can’t know, if it didn’t send off some little buggers in the body to take root some place else. The likelihood is that it hasn’t and that when they went back and removed it with the clear margins etc etc, is that it is gone forever. But then, well, being me. I did all this research. I see the people who started out as in situ and it returned. I am furious that there is no way to keep track of this thing at this stage. I hate that there is no monitoring for this other than seeing my derm regularly. The likelihood of it returning in another mole being so small, it seems insane. I don’t know. Am I crazy? No blood test, no xray, no nothing. How do I know I am not going to be in the percentage that it returns? There seems to be nothing I can do to reduce the chances. I hate that I have no control. I hate that I have this evil little monster lurking in the back ground. Did we cut all of him out, or is he still hiding, waiting for when my immune system is down on its luck and pounces on me?

Why exactly, if this friggin cancer so darn deadly, is there so little research money being spent? Why on earth is this some big collosal secret? Why isn’t someone going into our high schools, before proms telling these kids, tanning beds can kill you? I don’t know. I am ranting. I am raving. I am upset. I don’t sleep. I can’t eat, I obsess over this day and night. I have read every single post on this board and I have come to “know” so many warriors. I cry over the sweet, smart, funny people that are gone and I think, these beautiful people are gone. And while we are all the luckier for having been in their orbit, but I should have never known of these people, they should be happily going about their lives. I don’t want to imply with my part about tanning beds either, that these people brought on their cancer either, because I know that sun and uv is only a part of the ugly truth. There are so many more issues and I am angry that we don’t even know those either!

So thank you for reading my introduction to me. I guess I have a lot of “issues” to work through. I plan on being more verbal now and less lurking. I need to get this out of me, to process these emotions, to offer support and give encouragement and just try to return to a new normal. One day at a time…

Time to put on your big girl panties and deal with it!

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