Why can't I go to the doctor and hear something really great? Every time I go, the news is not so hot. I mean, it's not horrible, as in "You have X months to live" but still...
The cancer has progressed. They found all kinds of excitement going on internally. The lymph nodes that were affected are bigger now, and the spot in my lung has continued to progress and now I have an ovarian cyst that we have never seen before. As my doctor put it... "It's not like your progression is on an express train; It's more like you are on a galloping horse." So I have all sorts of options for this, but the option that my doctors seem most excited about is a Phase 1b trial by Novartis. The clinical trial supervisor has gained a slot for me. Now we just have to get all my prior scans to her and see if I am approved.
For anyone who doesn't know... a phase 1 trial is described as:
"Phase I studies assess the safety of a drug or device. This initial phase of testing, which can take several months to complete, usually includes a small number of healthy volunteers (20 to 100), who are generally paid for participating in the study. The study is designed to determine the effects of the drug or device on humans including how it is absorbed, metabolized, and excreted. This phase also investigates the side effects that occur as dosage levels are increased. About 70% of experimental drugs pass this phase of testing." - From UNC-CH clinical trials website.
This is a trial for a HER-2/ HER-3 fighter. There is no information even posted yet on this trial, as it opened on the 25th of March. When I get more info, I will share it.
Michele is worried, stressed and scared. Mom is the same. Me... not so much. I have used up all my worried and scared for now. I knew it was progressing. I could feel it. I knew deep inside that the Xeloda wasn't working. Any drug that comes at me with so few side effects... especially with the way I attract bizarre side effects, was not quite strong enough for this body. But I would like to thank the people at Genentech. Their drugs help so many people and I will be going back on their miracle drug Herceptin while we wait for the trial to either accept or reject me. We know that it works for me.
So... why am I doing this trial? Well... if I get accepted, the trial is a chance with a drug that they have high hopes for. It is combining a drug I know has worked for me in the past with a drug from a well respected company that they have high hopes for. Also, if the trial takes me, I will be checked more frequently. If the drug is not working for me, I still can go back to my other options. If I use one of the other options first, then I don't qualify for the trial. So, as Michele put it... this is another torpedo in our arsenal. I understand the risks, and I am okay with them. It may not work for me. It may give me really bad side effects (but I am used to that), and then there is the biggie... it may be life threatening.
I know a lot of people would look at that last risk and say Heck No! No trials for me!, but I am not that person. If something were to happen, if there were some really adverse side effect, at least we would discover it on one person instead of having it happen to hundreds. Giving this a shot for me is a chance to help women I will never see, but whose lives I hope to have a part in saving. I really hope it works for me and that I sail through it with flying colours, with my cancer held in stasis (which is the goal of this test from what I understand). But even if the worse should happen, at least my life will have been lived as I always try to live... in service to others.
The cancer has progressed. They found all kinds of excitement going on internally. The lymph nodes that were affected are bigger now, and the spot in my lung has continued to progress and now I have an ovarian cyst that we have never seen before. As my doctor put it... "It's not like your progression is on an express train; It's more like you are on a galloping horse." So I have all sorts of options for this, but the option that my doctors seem most excited about is a Phase 1b trial by Novartis. The clinical trial supervisor has gained a slot for me. Now we just have to get all my prior scans to her and see if I am approved.
For anyone who doesn't know... a phase 1 trial is described as:
"Phase I studies assess the safety of a drug or device. This initial phase of testing, which can take several months to complete, usually includes a small number of healthy volunteers (20 to 100), who are generally paid for participating in the study. The study is designed to determine the effects of the drug or device on humans including how it is absorbed, metabolized, and excreted. This phase also investigates the side effects that occur as dosage levels are increased. About 70% of experimental drugs pass this phase of testing." - From UNC-CH clinical trials website.
This is a trial for a HER-2/ HER-3 fighter. There is no information even posted yet on this trial, as it opened on the 25th of March. When I get more info, I will share it.
Michele is worried, stressed and scared. Mom is the same. Me... not so much. I have used up all my worried and scared for now. I knew it was progressing. I could feel it. I knew deep inside that the Xeloda wasn't working. Any drug that comes at me with so few side effects... especially with the way I attract bizarre side effects, was not quite strong enough for this body. But I would like to thank the people at Genentech. Their drugs help so many people and I will be going back on their miracle drug Herceptin while we wait for the trial to either accept or reject me. We know that it works for me.
So... why am I doing this trial? Well... if I get accepted, the trial is a chance with a drug that they have high hopes for. It is combining a drug I know has worked for me in the past with a drug from a well respected company that they have high hopes for. Also, if the trial takes me, I will be checked more frequently. If the drug is not working for me, I still can go back to my other options. If I use one of the other options first, then I don't qualify for the trial. So, as Michele put it... this is another torpedo in our arsenal. I understand the risks, and I am okay with them. It may not work for me. It may give me really bad side effects (but I am used to that), and then there is the biggie... it may be life threatening.
I know a lot of people would look at that last risk and say Heck No! No trials for me!, but I am not that person. If something were to happen, if there were some really adverse side effect, at least we would discover it on one person instead of having it happen to hundreds. Giving this a shot for me is a chance to help women I will never see, but whose lives I hope to have a part in saving. I really hope it works for me and that I sail through it with flying colours, with my cancer held in stasis (which is the goal of this test from what I understand). But even if the worse should happen, at least my life will have been lived as I always try to live... in service to others.
You have the best attitude ever and we are very proud and amazed by you. Stay strong we love you...your family in ohio
ReplyDeleteThank you and I love you all too! I get my strength from my loving family... so thank you for that too. I couldn't do this if it wasn't for that.
DeleteI am so sorry to hear that it is continuing to progress. I pray for you daily and I am encouraged by your positive attitude and strength. Thank God, He gives us an amazing amount of strength and a peace that passes all understanding, I can see those things in you and know that He is with you in all circumstances. Are you still going to TX, was it? I haven't seen any updates since I am not on Facebook and just wondered if that was still an option. Jason, the girls and I continue to pray for you and I hope that this trial will be effective and you will see improvement with few side effects ( I am a side effect queen as well, so I know how that is!) Stay Strong and never give up!
ReplyDeleteAll I can say is I love you and will do whatever you need me to.
ReplyDeleteDawyn-your strength and resolve is what is pushing you through this hell! Keep standing tall and strong! You are ALL always in my thoughts!
ReplyDeletexoxo
Katy