I'm starting a trial tomorrow
Crow71
Member Posts: 679 Member
I have decided to participate in a phase 1 trial at Duke. I don't like the whole idea of trials, but the drug I'll be taking is unlike any other trial drug I've investigated. The drug is called Medi-565 and was developed by MedImmune.
It's known that one reason some immune systems don't properly deal with cancer cells is because they don't "see" the cancer. Medi-565 is designed remedy this.
From the study info packet:
"MEDI-565 is a small protein that binds to both the CEA on GI cancer cells and to other cells in your immune system called T cells. These T cells then direct your immune system to kill these cancer cells that express CEA before they grow into more cancer cells."
In other words, the drug doesn't kill cells, it helps your body kill the cancer cells. That goes hand in hand with my current treatment plan of supplements. In fact one of the supplements I take is to supercharge T cells. And, sInce the drug doesn't kill cells, it doesn't have all of the toxicity of "regular" chemo drugs.
"But Crow, you carrion eating, cawing ****; what are the negatives?" The biggest downside is that we don't know what the downsides are. Animals don't have T cells, so very little animal testing was done. The doctors are thinking that there may some allergic reactions. Could be mild, could be severe. The drug interacts with the immune system, and the immune system may reject the drug.
"Well Crow, you messenger of death ****, how have all the other people who have taken the drug faired? Has anyone died?" I heard the first guy at Johns Hopkins is doing really well. I'll be the second.
"Seriously Crow. You'll be the second human to take this drug!? That's insane. I think somebody laced your refer with stupidity."
I'm feeling a little conflicted, but I think this is the right thing to do. My cancer continues to grow as does my pain. My liver function is great despite having 30 or so tumors in or on it. The lung mets are still small. It's the peritoneal mets that are a problem. I've got at least 3 that have grown pretty big. The big one at the surface of my abdomen is pushing against my intestines and liver. Despite this I don't feel desperate, but I do feel like I need to be doing something more than supplements. The trial feels like the right thing to do.
The trial is a 3 hour infusion for 5 days plus observation time, with lots of tests as we go. Then I have labs every Monday for three weeks. Then the 28 day cycle starts over gain. At the end of the 2nd 28 day cycle I'll have more scans and we'll see where we're at.
I welcome any questions that you have. I would also be happy to email you the study info document. Just pm me your address and I'll send it along.
Take care everybody. Stay focussed.
Roger
It's known that one reason some immune systems don't properly deal with cancer cells is because they don't "see" the cancer. Medi-565 is designed remedy this.
From the study info packet:
"MEDI-565 is a small protein that binds to both the CEA on GI cancer cells and to other cells in your immune system called T cells. These T cells then direct your immune system to kill these cancer cells that express CEA before they grow into more cancer cells."
In other words, the drug doesn't kill cells, it helps your body kill the cancer cells. That goes hand in hand with my current treatment plan of supplements. In fact one of the supplements I take is to supercharge T cells. And, sInce the drug doesn't kill cells, it doesn't have all of the toxicity of "regular" chemo drugs.
"But Crow, you carrion eating, cawing ****; what are the negatives?" The biggest downside is that we don't know what the downsides are. Animals don't have T cells, so very little animal testing was done. The doctors are thinking that there may some allergic reactions. Could be mild, could be severe. The drug interacts with the immune system, and the immune system may reject the drug.
"Well Crow, you messenger of death ****, how have all the other people who have taken the drug faired? Has anyone died?" I heard the first guy at Johns Hopkins is doing really well. I'll be the second.
"Seriously Crow. You'll be the second human to take this drug!? That's insane. I think somebody laced your refer with stupidity."
I'm feeling a little conflicted, but I think this is the right thing to do. My cancer continues to grow as does my pain. My liver function is great despite having 30 or so tumors in or on it. The lung mets are still small. It's the peritoneal mets that are a problem. I've got at least 3 that have grown pretty big. The big one at the surface of my abdomen is pushing against my intestines and liver. Despite this I don't feel desperate, but I do feel like I need to be doing something more than supplements. The trial feels like the right thing to do.
The trial is a 3 hour infusion for 5 days plus observation time, with lots of tests as we go. Then I have labs every Monday for three weeks. Then the 28 day cycle starts over gain. At the end of the 2nd 28 day cycle I'll have more scans and we'll see where we're at.
I welcome any questions that you have. I would also be happy to email you the study info document. Just pm me your address and I'll send it along.
Take care everybody. Stay focussed.
Roger
0
Comments
-
Dear Roger
I am glad you have found a trial that you feel is in the direction you want to go.
Being second to try out this possible miracle is a big deal and it is super that you want to be that person. Where would any of us be without someone going first or second?
I am praying that this is THE ONE which shows positive results for you with little to no side effects of its own.
You say it feels right, then go for it with gusto!
Hugs,
Marie who loves kitties0 -
Roger
This should be an interesting "science experiment", Roger. Trails have to be blazed and it looks like we're the ones that have to clear the path for others to walk down.
I remember being Numero Uno for my DaVinci surgery and it opened the door for others to follow, so it can be a good thing to be early in line. I'm sure you're apprehensive about it, but I feel you are giving yourself every good chance that you see.
I stand with you as you move forward and eagerly await what you find out.
-Craig0 -
Just goodluck mateSundanceh said:Roger
This should be an interesting "science experiment", Roger. Trails have to be blazed and it looks like we're the ones that have to clear the path for others to walk down.
I remember being Numero Uno for my DaVinci surgery and it opened the door for others to follow, so it can be a good thing to be early in line. I'm sure you're apprehensive about it, but I feel you are giving yourself every good chance that you see.
I stand with you as you move forward and eagerly await what you find out.
-Craig
roger,
When I read your post all I can think of is
"Yes balls of steel", number two what a legend.
I pray it works for you and all to come.
Now I will be praying for you and john.
hugs,
pete0 -
Wow
Hi Roger,
Wow- this trial sounds very interesting and intriguing. A little scary as the outcomes are basically unknown, but also sounds like it could have amazing possibilities!
I will be watching you carefully to see how this goes, as I'm always wanting to know my future possibilities. I'm rooting for you and praying too.
Also, in response to your reply to my post on my scan results, I'm sorry that it upset you so much. I know how you feel though, hearing other people's results reflects on ourselves too and how much hope we hold. Well, just remember that there are quite a few people who have been stage IV that are now talking about how long they've been cancer free. Hasn't happened with us yet, but it still gives me hope that it is possible.
You take care & fight on!
Lisa0 -
Roger:
You know how much I care about you and your little family. I have done some research on this T-cell stuff in the past but must admit a lot of it was medical talk I simply did not understand, even with a medical dictionary on hand. It is indeed promising for the future of cancer therapies.
Although a bit scary, it is a promising option for you at this point in your journey and will afford the docs much knowledge.
If you are unable to post please have Kim do it so we can follow your journey.
Wishing you nothing but the best, but, you already know that.
Hugs to you and that wonderful wife and kids of yours - Tina0 -
I am glad
Roger,
I am glad you have found a study that you are interested in participating in. It sounds like a really interesting one, too. I hope this is extremely successful + we will all say we know the 2nd person who participated in this Medi-565 study + now look at him!!!
Good luck + please let us know how it is going.0 -
This comment has been removed by the Moderatorlisa42 said:Wow
Hi Roger,
Wow- this trial sounds very interesting and intriguing. A little scary as the outcomes are basically unknown, but also sounds like it could have amazing possibilities!
I will be watching you carefully to see how this goes, as I'm always wanting to know my future possibilities. I'm rooting for you and praying too.
Also, in response to your reply to my post on my scan results, I'm sorry that it upset you so much. I know how you feel though, hearing other people's results reflects on ourselves too and how much hope we hold. Well, just remember that there are quite a few people who have been stage IV that are now talking about how long they've been cancer free. Hasn't happened with us yet, but it still gives me hope that it is possible.
You take care & fight on!
Lisa0 -
Hey kiddo!
I think that's just awesome, Roger! I've read about that therapy a while ago, and when i asked my onc about it, he simply said it wasn't available. There is a whole line of these bio-engineered therapies that are supposed to be coming out to train our bodies to recognize the bad cells from the good, and annhilate them. I'm so happy they're being tested now. It sounds so much better than chemo. You know me, i believe it's all about immune function, and i think you do to. Belief is half the battle, so this will definitely work!
Good luck with it, and i will be looking out for your posts about how it's going.
Hugs!
Krista0 -
Roger!
Awwwright! Nothing better than to have a plan... and be able to stick to that plan. Yes, Trials are tricky and we, the lay people who are depending on them, don't REALLY understand all the ins and outs of them. On the other hand, by the time they get to the human trial stage, a lot of research and study has gone into them. It's not like us laypeople who do things like, "Gee, I wonder if I were to boil some tulip leaves and add garlic to the brew, if that will be the new cure all?" As lay people we really do try to understand and want to find the magic bullet so badly that we tend to jump to conclusions based on heresay. But with trials, there have been researchers, scientists, medical experts and a whole army of various experts putting their .02 in, coming up with conclusions on paper, doing tests pre-human and getting it to such a stage that it makes sense now to do human trials. Sometimes, I have to say it's probably better to even skip over the animal testing (no, I'm not going to get into a discussion for/against animal testing... that's a whole other kettle of fish), because animal systems are NOT the same as human systems. Some are very similar, but the two are not the same, so after you spend a few years doing the animal testing, it's like starting over to do the human trials.
I think what you are doing is very brave and yet it seems like a natural option, and one that you are eligible for. The little one/two sentence about what the drug is suppose to do (build up the T-cells so the T-cells do the attacking on the cancer cells) makes sooooo much sense if you have followed the history of AIDS medications. Look where we are with AIDS now? Back in the early 80s when AIDS first hit North America... not only did we not know what it was and it was assumed only gay folk could get it (gee, even in the 80s, human knowledge was so primitive and based on rumours and what we see is what it is) and it did not affect the hetrosexual world, this disease became a disease of epidemic proportions. Cancer is a disease of epidemic proportions too. During the 80s and early 90s, if you were diagnosed with AIDS it was an automatic death sentence and from diagnosis to death, NO ONE lived more than 2 years. There was no 5 year survival rate, 2 years max and most didn't last that long. They came up with one or two drugs for AIDS which did nothing for survival rate, but both drugs were to build up the immune system. Now, here we are in the 2000's and AIDS is no longer a death sentence in North America. There are now drug cocktails that YES, they are custom designed for each individual based on their immune system and as long as people are taking their meds, they are showing no sign of HIV or the disease (they are HIV/AIDS NED)... but if they stop taking their drug cocktails, then yes, the disease is still there. It's unfortunate that these AIDS drugs are not available to everyone (think third world countries and/or countries that don't supply them as part of their healthcare) but for those who do have them, they are living long, healthy lives, even though they have been diagnosed.
THAT is what these trials can do for us.... and someone had to be the trial participants for the AIDS cocktail drugs... and chances are they are still around to talk about it
So you may be on to the magic cocktail that is going to be the Roger cocktail... and we will all be following you with great interest!! Sure it's scary... being the first to try anything with no one having succeeded or failed before you... that's a huge step. But think of the rewards if this works the way the researchers and experts who are putting this trial together think it has the potential for
Good for you and I'm sending sparks and thoughts that this is THE ROGER COCKTAIL!!
Cheryl0 -
Crow........kristasplace said:Hey kiddo!
I think that's just awesome, Roger! I've read about that therapy a while ago, and when i asked my onc about it, he simply said it wasn't available. There is a whole line of these bio-engineered therapies that are supposed to be coming out to train our bodies to recognize the bad cells from the good, and annhilate them. I'm so happy they're being tested now. It sounds so much better than chemo. You know me, i believe it's all about immune function, and i think you do to. Belief is half the battle, so this will definitely work!
Good luck with it, and i will be looking out for your posts about how it's going.
Hugs!
Krista
I want to thank you for doing this.........for you and your family.......I know that all of us have our choices and I respect anyones choice whether I agree with it or not, honestly, when you made a choice to do no more except the regimen you took it really got to me. Now, I see that a trial becoming available and I see the spark back...I like seeing the spark in you return, and I like the choice that you are making in doing this trial...not that its any of my business, but I see the survival instinct becoming very very active....it bodes very well with you.........Love Hope and Thanks............buzz0 -
Hey Roger
Glad to see you as upbeat as you are and with a plan! I will be sending many sparks your way tomorrow and all the tomorrows afterwards. After all, you are the Master of 'sparks' and you so graciously taught us semi's the art of sparking
Roger, my sister was in a trial similar to yours, in that she was one of the first to be studied using certain meds.It was successful and has helped many, many people live longer, better lives.
Good luck to you and here's hoping you have excellent results.
-Pat0 -
Roger that's what I would do too, so I think is theJaylo969 said:Hey Roger
Glad to see you as upbeat as you are and with a plan! I will be sending many sparks your way tomorrow and all the tomorrows afterwards. After all, you are the Master of 'sparks' and you so graciously taught us semi's the art of sparking
Roger, my sister was in a trial similar to yours, in that she was one of the first to be studied using certain meds.It was successful and has helped many, many people live longer, better lives.
Good luck to you and here's hoping you have excellent results.
-Pat
correct decision , I pray for the success of the trial !
Hugs my friend! And please keep us informed about !0 -
Know the feeling
Roger
As you may have read my partner recently wnet on a trial, E7050, lets just say for someone who was feeling well, no symptoms, no weight loss since diagnosis it did not go well. 16lbs in 13 days loss, no appetite, we are working on theat now and no tolerance anymore to having any fruit juice, when we stopped and chatted with the Doc I suggested they use it as an anti-obese drug, take it and you'll never eat again !!!
I wish you well, we are waiting to hear tomorrow about another trial, might even be the same as yours, though there are lots ongoing.
The Drug Development Unit here in the UK is the national lead so we are well placed, how wee see it is that, sooner rather than later someone will come up with the treatment to 'stop' it, the race is on, whoever gets their drug through first wins and so do we, when options are limited sometimes you have to step up.
I hope it goes well, I shall be watching your posts so if it works for you we can see if they are trialling it here.
I shall post up on what my partner is offered next and keep the group here informed.
Good luck,
Gary0 -
Roger Dodger.....taraHK said:Good luck!
Good luck! And please keep us posted.
Tara
Hey you....... It seems everyone has taken the words right out of my mouth so ditto on all responses!! This really sounds like a promising trial. I am so happy you are a part of it and if your gut is telling you..DO IT...,.then by God...you gotta do it!!! Keep us informed and sending some hot arse vibes your way!!!!!!!!! Take care..
Love ya my friend....... Jennie0 -
Thinking about you!
Roger,
I have been thinking about you a lot lately and I wondered how you were doing on the supplements. When I read your post I almost wanted to cry...tears of joy and hope. I admire you so much and I know you and your wife have given this a lot of thought and feel it is the right path to take. Honestly, I would make the same decision and enter this trial, too. It sounds so promising and makes so much sense. It's about time they find a cure for this disease, so why can't this be the "one". You will be in my prayers tomorrow as you begin this trial, Roger. We are all here cheering you on.
Hugs,
sara0 -
This comment has been removed by the Moderatorsasjourney said:Thinking about you!
Roger,
I have been thinking about you a lot lately and I wondered how you were doing on the supplements. When I read your post I almost wanted to cry...tears of joy and hope. I admire you so much and I know you and your wife have given this a lot of thought and feel it is the right path to take. Honestly, I would make the same decision and enter this trial, too. It sounds so promising and makes so much sense. It's about time they find a cure for this disease, so why can't this be the "one". You will be in my prayers tomorrow as you begin this trial, Roger. We are all here cheering you on.
Hugs,
sara0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.9K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 398 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 794 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 63 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 540 Sarcoma
- 734 Skin Cancer
- 654 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.9K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards