Merck EAP PD1 - some info

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6/26/2014 3:06pm
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Replies: 7

Dunno if this info helps but I saw my local doc yesterday and was suprised to hear some of his patients he sent to mayo have been turned away from Merck's EAP PD1 NCT02083484. He said it is because they were in wheel chairs.

As we see on clinicaltrials.gov this does require a 0 or 1 for the Eastern Cooperative Oncology Group Performance. I guess I never noticed that before eventhough I had read it several times. So if you are trying for this trial and are in a wheel chair I dunno what to say about it other than my own story. Back in February the docs were saying I was a hairs breath from being paralyzed. They said anyone else with that much spinal cord damage would already be paralyzed. So yeah I was in a wheel chair some. But I got some good radiation to the tumor that was pressing on my spinal cord that shrank it by about half so now I walk my 2 miles a day and get this PD1 just fine. Also before the radiation they gave me steroids that a scan in preparation for the radiation proved in the matter of a week or so provided more room in the spinal canal for the cord thus making walking much easier. So I dunno what else to say but I hope everyone who needs this medicine gets it somehow.

 

tcell - (6/27/2014 - 3:42am)

Hi Arthurjedi007,

thanks for the information. I think we have a similar problem as mets in the spine are concerned and wanted to ask you a few things.

i am based in Austria, was dx with stage IV in February, among plenry of other mets I have one small met in the hip bone, one in TH-10. According to my oncologist there is no need to worry at the moment. I have been on Taf / Mek for 4 months. Scans last month showed that all mets had decreased considearbly. Only the bone mets had not changed in size with the possibility that what can be seen in the CAT scan is already not active anymore.

i had asked them about the option of radiation and / or Zometa but they said that this was only done as a palliative measure in case you have pain as it does not really promise much success.

would be grateful if you could share your experience with your vertebra met. What does "that much spinal chord damage" mean?

thanks,

Chris

It sounds great that the Taf / Mek combo has done some great help for you. Most people with mets in their spine have no issue like I have had.

The spinal cord issue is really what the doctors first saw for me. I woke up with a bulge on my side they later diagnosed as a seperated right external oblique muscle. The first CAT scan showed spinal cord compression at the T10. Basically for me the spinal cord damage according to 2 medical oncologists was caused by the swelling and inflammation of the tumor in the T10 vertebrae. If that swelling increased a hairs breath in a certain direction I would have been paralyzed. According to several neurosurgeons and radiologists the best I could understand since they seemed to say different things is over half the T10 vertebrae had been dissolved by the cancer. Also the spinal canal did not have room for the spinal cord thus causing spinal cord compression. From April to February of last year I lost about an inch in height but none since. According to the PET scan the entire T10 seemed to be cancer cells.

I was that way in June of last year where a non melanoma oncologist had me start curative radiation at the t8, t9, t10 and t11 vertebrae. But after only 2 treatments he saw the PET scan showed lots more tumors so unknown to me he had the radiation oncologist change from curative to pallative radiation with the plan I would get into the taf/mek/ipi trial that was going on at the time. Pallative is really only for pain and wears off rather quickly. I went to mayo and a local melanoma oncologist but that trial never happened for me and I found out later it got cancelled due to toxicity. They tried zelboraf which shrank nothing. So they tried ipi which shrank nothing and the radiation wore off so I was right back being almost paralyzed except even closer because the tumor was bigger. I started the taf / mek combo then stopped for the stereostatic radiation to the T10 then started back on the taf / mek combo. The radiation seemed to have shrank the tumor by about half so now the doctors don't seem concerned about it anymore. The taf / mek combo kept most everything else from growing and even a few of the bone mets shrank a little except for the big one in my left scapula which grew a lot and spread to a lymph node. Now I'm on merck's eap pd1 hoping it will chip away at this disease.

For me they seem to always do PET scans. An MRI scan is good for seeing spine issues.

Since you are on the Taf / Mek combo and it seems to be working if I were you I would stick with it for now. My local doc has had people on a trial of it for 2 years now he said and now it's approved here by the fda as a combo. I also encourage my fellow mel warriors to be thinking of an immunotherapy treatment for longer term results. Like ipi but preferably either nivo or pembro pd1. Maybe even a pd1 combined with anti-kir, anti-lag or something but preferably after they have perfected it so you can avoid the side affects.

So yeah just because you have mets in your spine does not mean you will ever have to deal with spinal cord compression or anything like that. It sounds like you are being treated with the latest and greatest braf combo so you should do great.

Best of luck to you.

Artie

tcell - (6/28/2014 - 4:44am)

Hi Artie,

thanks for all the information. This sounds like a very rough ride you must have had. Hoping the PD1 will do the best it can do for you!

All the best,

Chris

tschmith - (6/28/2014 - 10:01am)

Hi Artie!  I've had similar problems to your's. First had a small melanoma removed from my arm in 1998 and then, Surprise!, it returned in my brain and was discovered 2/13...had fallen and thought I had concussion but CT scans showed a tumor in my left frontal lobe...the return of Melanoma probably via a small met in my lung.  Then... Melanoma, attacked my L2 Vertebrae and I experienced a 50% collapse.  Prior to surgery they tried conventional radiation.  Wondering if SRS would have worked better.  On 10/29/14 they performed an emobolization of the tumor, cutting off most of the blood supply.  Good move on the doctor's part!  On Halloween (!!!) I had surgery/fusion...two rods, 6 screws. They tried their best to remove all the tumor but couldn't.  The nurses and surgeons were dressed in halloween head dressings and Inova Fairfax is on Gallows Road....GOT to find your sense of humor in all this mess!  i did well with the surgery and was able to get off that miserable Fentynl patch.  OH...I have lots of other mets creeping around.  Mass in chest wall, some in the hip, marbles floating around in my abdomen,  liver...not sure after Yervoy may have disappered.  Crainiotomy/ SRS has been successful so far since 2/22/13.  Failed Yervoy after two infusions due to Pituitary deciding to not make cortisol however recovered very quickly with steriods.  Have been treated at UVA, Hopkins, NIH (gene transfer therapy failed...tough trial, good care, and great doctors but it just didn't work), and now my Hopkins doctor has referred me to Georgetown for Merck PD1 EAP.  Met with Dr. Atkins on Tuesday and just need to get blood work before I can start.  The spine still bothers me, stiffness and a weary feeling...I too walk but I'm not up to 2 miles.  (I'm 59 but I was always a walker and my eventual goal is 3 miles.)  Do you wear a back brace?  My PT said to use the brace while my neurgosurgeon says do core exercises to support the back.  The vertebrae is still fractured. I use Aleve or Advil when needed at this point.  I too am hoping that the anti-PD1 will do it's job.  My doctors are very interested to see how it will react with the T-cells I received at NIH.  OH...have you ever tried Xgeva?  I was on it but was taken off for the clincal trial at NIH for various reasons. However, it seemed to be helping and will ask if I can resume the injections while on Pembro. 

Best of luck to you!  I'll be looking for updates and praying for the results we're all hoping for!

Terrie

Wow Terrie you have been through way more than me. Yes I am on Xgeva. I guess it is doing something because I have lost no more height since I started it in February. At Mayo they checked with the trial folks and they allow taking Xgeva while on Pembro because it is not for treating the cancer it is for treating bone fractures. I got a back brace that was made for me which I used to wear only when I was in the car but now I usually don't even wear it then. My oncologist says to wear it if I feel like I need to so I now only wear it on the long car trip to mayo. A brace if you wear it a lot if I understand correctly basically weakens your muscles so I try to avoid wearing it. I don't do the core exercises or any exercise except walking because I don't want to mess my back up any more than it already is. Knowing me I would do the exercise wrong or something.

Good luck at Georgetown with this awesome pd1.

Artie

tschmith - (6/28/2014 - 10:01am)

Hi Artie!  I've had similar problems to your's. First had a small melanoma removed from my arm in 1998 and then, Surprise!, it returned in my brain and was discovered 2/13...had fallen and thought I had concussion but CT scans showed a tumor in my left frontal lobe...the return of Melanoma probably via a small met in my lung.  Then... Melanoma, attacked my L2 Vertebrae and I experienced a 50% collapse.  Prior to surgery they tried conventional radiation.  Wondering if SRS would have worked better.  On 10/29/14 they performed an emobolization of the tumor, cutting off most of the blood supply.  Good move on the doctor's part!  On Halloween (!!!) I had surgery/fusion...two rods, 6 screws. They tried their best to remove all the tumor but couldn't.  The nurses and surgeons were dressed in halloween head dressings and Inova Fairfax is on Gallows Road....GOT to find your sense of humor in all this mess!  i did well with the surgery and was able to get off that miserable Fentynl patch.  OH...I have lots of other mets creeping around.  Mass in chest wall, some in the hip, marbles floating around in my abdomen,  liver...not sure after Yervoy may have disappered.  Crainiotomy/ SRS has been successful so far since 2/22/13.  Failed Yervoy after two infusions due to Pituitary deciding to not make cortisol however recovered very quickly with steriods.  Have been treated at UVA, Hopkins, NIH (gene transfer therapy failed...tough trial, good care, and great doctors but it just didn't work), and now my Hopkins doctor has referred me to Georgetown for Merck PD1 EAP.  Met with Dr. Atkins on Tuesday and just need to get blood work before I can start.  The spine still bothers me, stiffness and a weary feeling...I too walk but I'm not up to 2 miles.  (I'm 59 but I was always a walker and my eventual goal is 3 miles.)  Do you wear a back brace?  My PT said to use the brace while my neurgosurgeon says do core exercises to support the back.  The vertebrae is still fractured. I use Aleve or Advil when needed at this point.  I too am hoping that the anti-PD1 will do it's job.  My doctors are very interested to see how it will react with the T-cells I received at NIH.  OH...have you ever tried Xgeva?  I was on it but was taken off for the clincal trial at NIH for various reasons. However, it seemed to be helping and will ask if I can resume the injections while on Pembro. 

Best of luck to you!  I'll be looking for updates and praying for the results we're all hoping for!

Terrie

tschmith - (6/28/2014 - 4:46pm)

Don't know how I posted twice!!!  

Terrie