Rob and I went to MSK today for my first scheduled FOLFOX treatment. FOLFOX is cancer-speak for a particular cocktail of meds. The meds are fluorouracil (also called 5FU), leucovorin and oxaliplatin. There is a similar regiment that is also often prescribed – and I may at some point in the future switch to – which replaces oxaliplatin with irinotecan. In addition, I will get Avastin (also known as bevacizumab). There will be a quiz later on the spelling and pronunciation of each of these compounds, so please study up…
In consulting with Dr. S, I decided to participate in a study of a new medicine that has “shown some promise” in early trials. Luckily for you quiz-takers, it doesn’t have a name yet, only a number from the pharma company that created it. I’ll get this drug in addition to the FOLFOX plus Avastin regiment. As a result of joining the study, however, today became a prep day and my treatment will actually be tomorrow. Prep means – signing treatment forms (in triplicate), drawing blood, doing an ECG and a CAT scan (includes an IV of an iodine solution to give the pictures contrast). The iodine injection is a little curious in that it makes you feel warm from the inside out! Then we consulted with the chemo nurse to review the side effects, logistics, etc and got the appointment for tomorrow.
Then I took Rob to a nice lunch because it’s her birthday!!
The decision to do the trial drug took some discussion. I won’t have a chance to get this drug if I don’t go on the trial. In my current position, I don’t feel like I have the luxury to pass up potentially helpful therapies, if they won’t be available to me again in the near future (which this one won’t). Early indications are that it could be effective and it doesn’t appear to have significant side effects or do harm. Rob was concerned about potential side effects and the additional doctor visits, blood draws, etc that come with being part of the study. She was also concerned that there is no evidence that the stuff actually works or that it isn’t potentially harmful (some work has been done on both issues but only in a limited way).
In the end, Dr. S couldn’t give us definite answers one way or the other. He simply reinforced that I will get the standard of care (the quiz drugs above) either way. So, since it’s my body, I decided to take the chance on the trial in the hope that there will be a benefit. There is extra monitoring with the trial, so they will hopefully pick up any side effects early and I always have the option to drop the trial drug at any time for any reason.
It’s also interesting to note that this is a “blind” study where 1/3 of participants get a high dose, 1/3 get a small dose and 1/3 get a placebo. The doctors don’t even know who’s getting which. So, in the end, after much discussion, I may just be getting sugar-water anyway!
So, I’m now prepped (poked and prodded) and ready to start my first session in the big chemo chair. We need to be back at MSK at 8 am tomorrow and have been told to expect a long day…..I’m bringing a good book….
In consulting with Dr. S, I decided to participate in a study of a new medicine that has “shown some promise” in early trials. Luckily for you quiz-takers, it doesn’t have a name yet, only a number from the pharma company that created it. I’ll get this drug in addition to the FOLFOX plus Avastin regiment. As a result of joining the study, however, today became a prep day and my treatment will actually be tomorrow. Prep means – signing treatment forms (in triplicate), drawing blood, doing an ECG and a CAT scan (includes an IV of an iodine solution to give the pictures contrast). The iodine injection is a little curious in that it makes you feel warm from the inside out! Then we consulted with the chemo nurse to review the side effects, logistics, etc and got the appointment for tomorrow.
Then I took Rob to a nice lunch because it’s her birthday!!
The decision to do the trial drug took some discussion. I won’t have a chance to get this drug if I don’t go on the trial. In my current position, I don’t feel like I have the luxury to pass up potentially helpful therapies, if they won’t be available to me again in the near future (which this one won’t). Early indications are that it could be effective and it doesn’t appear to have significant side effects or do harm. Rob was concerned about potential side effects and the additional doctor visits, blood draws, etc that come with being part of the study. She was also concerned that there is no evidence that the stuff actually works or that it isn’t potentially harmful (some work has been done on both issues but only in a limited way).
In the end, Dr. S couldn’t give us definite answers one way or the other. He simply reinforced that I will get the standard of care (the quiz drugs above) either way. So, since it’s my body, I decided to take the chance on the trial in the hope that there will be a benefit. There is extra monitoring with the trial, so they will hopefully pick up any side effects early and I always have the option to drop the trial drug at any time for any reason.
It’s also interesting to note that this is a “blind” study where 1/3 of participants get a high dose, 1/3 get a small dose and 1/3 get a placebo. The doctors don’t even know who’s getting which. So, in the end, after much discussion, I may just be getting sugar-water anyway!
So, I’m now prepped (poked and prodded) and ready to start my first session in the big chemo chair. We need to be back at MSK at 8 am tomorrow and have been told to expect a long day…..I’m bringing a good book….
5 comments:
Good luck Wednesday with the start of the treatments.
One hundred percent of the shots you don't take don't go in.
- Wayne Gretzky
What lies behind us and what lies before us are small matters compared to what lies within us.
-Ralph Waldo Emerson
If you want a guarantee, buy a toaster.
- Anonymous
It is the character of a brave and resolute man not to be ruffled by adversity and not to desert his post.
- Cicero, Roman orator
I'd say I'm 100% confident that you'll be a better man for all of this when it's all over, but I won't. Why not? Because I'm not sure you can be a better man than you already are. I love you, you are in my thoughts every day.
- Kevin
Uncle Brian, good luck tomorrow! Say hello to the family for us. We are all rooting for you.
Love, Sara
Brian -
Your courage and outlook are awesome.
Caryn and David
If thoughts are any help you are in ours. I agree with your decision to participate in the trial since you can always withdraw. Try to get information along the way about how the trial is helping you.
I have greatly enjoyed reading
my husband's blog, and everyone's
comments. Thanks!!, the love is
radiating from our computer screen
and filling the room.
All I have to say about my list of
concerns is, I'm the worrier and
Brian is the warrior. I'd say we
complement each other nicely. You're the best, BB! RB
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