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.

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Hypophysitis Induced by Monoclonal Antibodies to Cytotoxic T Lymphocyte Antigen 4: Challenges from a New Cause of a Rare Disease

 

Specific human monoclonal antibodies antagonize cytotoxic T-lymphocyte antigen 4 (anti–CTLA-4 mAbs), a negative regulator of the immune system, inducing unrestrained T-cell activation. In patients with advanced or metastatic melanoma, one of these agents, ipilimumab, produced considerable disease control rates and, for the first time, a clear improvement in overall survival outcomes. However, accumulating clinical experience with anti–CTLA-4 mAbs identified a novel syndrome of autoimmune and autoinflammatory side effects, designated as “immune-related adverse events,” including mainly rash, colitis, and hepatitis. Autoimmune hypophysitis has emerged as a distinctive side effect induced by anti–CTLA-4 mAbs. This condition may be life threatening because of adrenal insufficiency if not promptly recognized, but it may easily be diagnosed and treated if clinically suspected. Hypopituitarism caused by these agents is rarely reversible and prolonged or life-long substitutive hormonal treatment is often required. The precise mechanism of injury to the pituitary triggered by anti–CTLA-4 mAbs is yet to be fully elucidated.

 http://theoncologist.alphamedpress.org/content/17/4/525.abstract?maxtoshow=&hits=1&RESULTFORMAT=&andorexacttitle=and&andorexacttitleabs=and&fulltext=melanoma&andorexactfulltext=and&searchid=1&usestrictdates=yes&resourcetype=HWCIT&ct 

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I just spent the whole day researching ways to convince my HMO, Northern Ca Kaiser, to pay for the testing, etc. associated with the Zelboraf/MEK Phase I trial I am trying to get into. I finally got some movement when my oncologist agreed to make the referral to UCSF. It still needs to go through the Outside Services review process, which occus at a local level.  What I needed was for a Kaiser doctor to initiate the referral and my oncologist was finally willing to do so. The factor that pushed him into changing his mind was the information that there were other Kaiser patients already enrolled in the study. I had to "encourage" someone at UCSF, where the study is taking place, to go through the files of the people currently enrolled to confirm that a Kaiser patient was amongst the enrollees. It was because of responses of people on this board, especially Harry, that I tried that strategy.

Thanks to all of you who gave me encouragement and advice. As Charlie noted, I can be persistent when I have to be but as many of you know taking on the "system" when you're cancer is progressing is a difficult task. The war is not yet won, since the Outside Service review physician can still refuse the request. I had already started a complaint process through the Health Plan administration, which I just put on hold. If I need to reactivate it I will. I burned up the phone lines and my internet connection this morning, but I was able to get movement so it was well worth it.

I think it is time for me to finally shower and get out of my bathrobe! Although maybe I will take a nap before that shower......

Gratefully,

Eileen L

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NYKaren's picture
Replies 4
Last reply 4/24/2012 - 10:38pm
Replies by: Karin L, aldakota22, NYKaren

Maybe the 3rd time typing this will be the charm.

I had my 3rd infusion on Thursday, and right after that my diahrrea went from controlled by Budesonine to having to add a 2 week course of Prednisone, to yesterday landing in the hospital.  Long story short, after much Dilaudid, CT scan and IV stroids, I have colitis and am now on 60 mg. Pred. 2x/day in addition to the Budesonine. Tapering hasn't been discussed yet.  Fourth infusion might be postponed if I get it at all.  He did say that we were looking for an imminune response, and we definately got it. At least i have until week 16 to finish Yervoy, and 4th infusion is usually at week 10, so I have 6 weeks to get over this. Also really bland diet--that helps a lot.

I have stage IIIc unresectable mel.  The areas that have mets large enough to qualify me for the new cohort of the BMS trial are on site on my scalp that was originally irradiated.So they don't count.  From my scalp down  my neck are mel satellite mets,  but none of the "fresh" ones are big enough!  Frustrating unless next PET scan shows more mel, which wouldn't be so good either.   

So tomorrow I go back to Dr. Halpern so he can continue freezing and we will probably add aldera.  I am insisting that leave the two largest mets alone to see if they grow large enough for the trial.    Good news is that the tweezed eyebrows that are growing back in are white.  Dr. Wolchok is very happy about that.

I know I'm hanging my hat on a trial and that's pretty crazy.  I wonder if they continue to have good results on the Merck and BMS trias, how long it would take to get FDA approval?  Can any of the more experienced members here even hazard a guess?  A year, five, ten??

If you've gotten this far, thanks for reading.  any input appreciated.

thanks,

karen

Don't Stop Believing

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Wilfred's picture
Replies 6
Last reply 4/24/2012 - 9:18pm
Replies by: Wilfred, gabsound, Linny

While spreading sunscreen (SPF 50) on my left bicep in February - in Jamaica at the Jamaica Inn where I thoroughly enjoyed myself - I notice a lump that had not been there before. I showed it to my wife and to my sister-in-law who is a nurse. They thought, as did I, that it was something to report to my doctor as soon as I got back to the US. WE got back to MD on Sunday evening, Dr D saw me at 3:00pm on Monday. The lump is about 1 inch in diameter and on the inside of my left arm. Dr D examined me and took a cell sample by aspiration. He gave me an order for a PET/CT and asked me to get it done ASAP. On Thursday of that week, 3/8/12, I had the PET/CT done at Capital Health Hopewell Hospital.The next day Dr D called to say the results were not good and that he wanted me to see Dr Scharfman at Hopkins.  I then went to Kentucky to spend a week as chaperone to some Portsmouth Abbey School students working on an Appalachia Service Project. Yesterday I picked up some CDs of the scan from the hospital to take with me to Dr Scharfman's on Thursday. A copy of the written report was in the envelope.

The report is 4 pages; good news can be reported in a sentence. There is a lot of terminology in the report that I do not understand. While reading it again last night,I used Google search to help me with various terms. For example: an SUV of 9.4 in my left bicep, intense uptake in the region of the pancreatic tail, focal abnormal uptake right hiliar region with suspected nodule of 7mm and an SUV of 15, intense focal uptakes within the left upper abdomen and mid abdomen, uptakes in my legs, lungs, colon. There are mentions of other uptakes in other places as well. The part that really bothers me is the in the Impression section: "Multiple focal areas of increased metabolic activity consistent with metastatic melanoma."

So...finally... I get to my point. What are the questions that I should ask Dr Scharfman on Thursday afternoon? This is the eighth time the M word has been used next to my name. I am positive and upbeat, worked my *** off down in Kentucky and told funny stories to the kids. My wife and children are very supportive and I am not afraid of the future. But I do want to understand what all this means before I meet with Dr Scharfman. Thanks, Wilfred

If you fight, you may lose, If you don’t fight, you will lose.

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Dgentz's picture
Replies 9
Last reply 4/24/2012 - 8:47pm

Hi! I'm due to start IL-2 next week after a recent surgery to remove more lymph nodes was not fully successful. I'm a bit scared of the treatment, based on things I've read about side effects.

Has anyone been through it recently?

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Hi
Just want to let you know my brain MRI from 11 weeks ago Proton treatment on two mets continues to show shrinkage. Other lesion in brain remain stable too. This is 4 weeks from first IPI reinduction. My blood is drawn each week and my liver numbers are very near to normal again. I continue with the 4 pills in the morning morning and 4 Zelboraf pills at night while continuing with the IPI infusions . I am a bit tired and bit unstable at times walking but all in all I feel good. I was really nervous about trying both Zelboraf and Yervoy simultaneously but so far it seems like it might have been the right decision for me. Next brain MRI not for 6 to 8 weeks unless something happens. Will update as new data becomes available, good or bad.
Thanks to all who contribute so much to this website.
Kathy D

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Jbrooks's picture
Replies 1
Last reply 4/24/2012 - 7:28pm
Replies by: scots

So much information should I or should I not... I am so confused, I have doctors saying well that is all there is and I should try and there are those who have done it and the melanoma comes back so strong they regret doing it.  I also have a blood clotting disorder that will be effected and that makes me worry.  I would love to hear from those who have done the treatment and those who have not done it and why.  I so do not want to regrett my decision but worry that either way  may be the wrong way to go.  I am 41 my melanoma was 2.1 in depth and one out of the two sentinal nodes had .25 tumor in the outside of the node.  They went back and took the area around the nodes and did not take all the nodes do to the fact of my clotting issue and not being able to have the swelling that may occur with the clotting issue that I have.  I don't know if any of that info makes a difference but that is what I was told.  My melanoma was contained and nonabrupted as well as nonmigrating good I guess, never thought I would say good and cancer at the same time,.

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Hi MPIP members,

A reporter fora majormagazine is developing an article about treatments for different cancers and she reached out to the Melanoma Research Foundation in hopes of speaking to a female melanoma survivor with a history of using Zelboraf. The reporter is hoping to speak to a woman in New York City and age 40 or above.

If you are interested in sharing your story, please complete this survey http://www.surveymonkey.com/s/JQH7V56by April30th.

Thank you to everyone within the MPIP community for your help in educating the public about melanoma! 

Shelby - MRF

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Jbrooks's picture
Replies 5
Last reply 4/24/2012 - 11:33am

So much information should I or should I not... I am so confused, I have doctors saying well that is all there is and I should try and there are those who have done it and the melanoma comes back so strong they regret doing it.  I also have a blood clotting disorder that will be effected and that makes me worry.  I would love to hear from those who have done the treatment and those who have not done it and why.  I so do not want to regrett my decision but worry that either way  may be the wrong way to go.  I am 41 my melanoma was 2.1 in depth and one out of the two sentinal nodes had .25 tumor in the outside of the node.  They went back and took the area around the nodes and did not take all the nodes do to the fact of my clotting issue and not being able to have the swelling that may occur with the clotting issue that I have.  I don't know if any of that info makes a difference but that is what I was told.  My melanoma was contained and nonabrupted as well as nonmigrating good I guess, never thought I would say good and cancer at the same time,.

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Greg - Kyles dad's picture
Replies 3
Last reply 4/24/2012 - 11:31am
Replies by: Becky, jag, Wilfred

A link to my son Kyle's activities after dx with stage IIIA in 2005; then progressed to stage IIIC in 2010.  He has moved on and hopefully can be an inspiration to some.

http://www.dailytarheel.com/index.php/article/2012/04/kyle_ernst_weightlifter_and_cancer_survivor_sets_sights_on_olympics

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Eileen L's picture
Replies 16
Last reply 4/24/2012 - 10:22am

Hi, folks. I have been diagnosed Stage IV for over four years and have had remarkable success with a drug called Nexavar, which is not suppose to work at all for us. Well, my luck has seemed to run its course.  I have a tumor on my adrenal gland that was stable for three years and now has taken off. It is up to 7cm per a MRI on Saturday. Was all set to go for surgery to remove the tumor when upon examining the MRI the surgeon realized I would likely lose my kidney if she removed the tumor, since it was so near to the renal arteries. So, now both my oncologists (one generalist, another Melanoma specialist) have recommended trying Zelboraf to shrink the tumor.

I am considering getting on the Genentech Phase 1b study, pairing Zelboraf with a MEK inhibitor. My Melanoma specialist, Dr. Daud at UCSF, thinks the MEK will boost the effectiveness of the Zelboraf by about 10-20%. While that sounds great, I also am without any therapy while I qualify for the trial and I am feeling like the Melanoma is going to overrun my body while I wait for the the trial to begin. I need to hold off on the Nexavar since I need to have a "wash out" period for the study. Have already been off of it for over a week in preparation for the now cancelled surgery. Since I can just start on the Zelboraf immediately if I don't wait for the trial approval, not sure what to do. Am seeing my "general" oncologist this afternoon and will discuss with him as well. Any thoughts would be greatly appreciated.

In the meantime, I have gone from being the poster child for positive thinking, living in the moment, making the most of every day, to a crying, weepy mess. I feel hopeless and defeated. I thought that I would be sitting in a hospital bed right now recovering from a laproscopic surgery. Instead, I am sitting in uncertainty, which I know is what we Stage IV folks do all the time. I just got so use to stable scans that I was lulled into a false sense of security, that somehow I was going to dodge the bullet depite knowing that the Nexavar usually doesn't work for more than 3-5years for the cancers it is approved to treat. The fact that I got over four years of stability from a medication that wasn't even suppose to work at all is a miracle which I am finding hard to be grateful for at this time.

Well, I guess it's time to stop the pity party. I am thankful for this board, I don't come here often, but there is always so much strenght and love here. I can use whatever encouraging words are out there. Any thoughts on whether to start the Zelboraf now or wait for the trial approval would be appreciated!

Eileen L

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Replies by: Eileen L, Harry in Fair Oaks, Anonymous

Hi gang. I am now doing battle with my HMO, trying to get them to cover the cost of tests required by this Pase I trial I am trying to qualify for. The study sponsors want the health insurers to pay for tests they consider usual care for melanoma patients. My insurer is telling me they don't cooperate/participate in Phase I trials. Any of you had any experience getting a health insurance company to pay for lab work, imaging studies, etc for a Phase I trial? I am appealing their decision but I would love to know if other HMOs and PPOs are covering this stuff. BTW, I am covered by Northern Ca Kaiser.

Thanks!

Eileen L

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himynameiskevin's picture
Replies 20
Last reply 4/23/2012 - 11:56pm

Hi everyone, I've been meaning and wanting to update, just haven't had anything to update on. But as of today, I've been on Zelboraf for six weeks, no noticeable side effects yet, not sure if that's a good or bad thing. One day I could feel the sun effecting/warming my skin a little quicker than normal. So I headed inside and have been really smart about my exposure since then. UPF clothing, umbrellas and such, and keeping a good eye out for any changes in my skin.

As for the good news, I had a PET/CT on Monday, my first one since starting Zelboraf. The report states that the things in my lungs are getting smaller. Finally. :) Of all the tumors/nodules in there, the largest, which was 4 - 4.5 cm in diameter a couple months ago is now reported at 2.5 -3.5 cm I think. And everything else inside me appears to be clear and normal. I know with Zelboraf, it’s most likely just a temporary fix, but maybe not, I've heard of a few people going on a year or two on the drug, and that gives me hope. Either way, it's a start, and will hopefully buy some time, maybe open up some other options. As for that steroid I'm on, I’ve tapered down from 4mg/morn and 4mg/night to just 1mg in the morning with just under a week to go until I'm completely off it. That'll be great, for it's had me feeling pretty crummy from time to time the last two months. I’ve got a follow up brain MRI on May 1st, and a couple appointments the following week, to talk and schedule another body scan. And that's it for now. Hopefully I'll be back to read and write more good news. Until then, always hoping for the best, for all of us.

-Kevin
 

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Rebecky's picture
Replies 2
Last reply 4/23/2012 - 7:15pm

Just checking in - 8 years NED, two healthy beautiful children (now ages 7 & 5).  Getting on with life, as my surgeon told me to those many years ago.

Cheers

Rebecky

Stage 1B (diagnosed April 2004)

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Lisa13's picture
Replies 24
Last reply 4/23/2012 - 6:09pm

Why is this happening??  Why would my brain tumour be growing since I had it done last November and now they say there's nothing they can do. Why can't people by resected or cyberknife!!

Some body help. I'm completely freaking out.

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

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