Well, they weren’t kidding when they said to expect a long day! Rob and I made the 6:35am to Penn Station this morning and got home a bit before 7 pm. Being the first visit, it was longer than the on-going will be, I’m told.
Before I get to describing the day, I want to point out that in this entry, I’m going to talk a little about pain and side effects. I don’t plan to turn this blog into a litany of complaints but I do want to document some of the initial things. I’ll start a separate paper log of symptoms, etc for the doctors as part of the treatment’s on-going monitoring.
I’ve also been amazed at the friendliness and kindness of everyone at MSK. From the receptionists to the phlebotomists (look that one up, Sara!) to the nurses and technicians, they all do their best to make it easier to get through the treatments. And the treatments, generally, are a lot of waiting around followed by being poked with a needle or two. Then you get an examination or a ride in a medical device. Clothing is optional…
The agenda for today was blood draw, visit with the oncologist, treatment and an ECG. Since I gave blood yesterday (twice), I questioned whether the draw was needed, but after a couple of calls, I was told that yesterday’s draw was my draw to qualify to be in the study. Today’s draw was my pre-treatment study. As the day went on, I had additional blood drawn after each individual dose was given (I’ll get to the dose sequence later).
To start treatment, I met with Dr. R since Dr. S is not in on Wednesdays. I learned that Dr. S saw 40 patients yesterday! Since he has always taken the time to fully explain things to Rob and me, I can’t imagine how long the day must have been (maybe his on-going patients don’t ask as many questions as we newbies do). Anyway, I liked Dr. R a lot. She too, took the time to talk through things. One issue I’ve had is an on-going acid reflux. I started having the problem sporadically (read: after business dinners involving rich food, wine and coffee) but in the last few months have taken quite a bit of Pepcid AC (without the benefit of rich food, wine or coffee!). In fact, my acid reflux actually showed up on the PET scan a few weeks back! Dr. S yesterday suggested that I start a daily oral anti-acid drug but didn’t write the script. I asked Dr. R today and she wrote a script for Protonix (pantoprazole).
I also asked her about a mild pain I’ve in my stomach for a couple of weeks. I had thought it was related to the ab surgery but everything else has gone away. It actually just feels like a cramp. Based on its location, Dr. R said that it could be pain from one of the liver lesions. I was wondering when I’d feel some symptom from the actual cancer. If it gets worse, I can take something for it but for now, I’ll let it go.
While I'm mentioning scripts, I should note that Dr. S wrote a script yesterday for anti-nausea medicine in case I get that side effect. The drug is Prochlorperazine. This drug will also be on the quiz I mentioned yesterday, so please add it to your notebooks!
So on we went to the 7th floor where they do a lot of the chemo for people in studies. I asked one of the nurses how many studies are going on and she started naming them and counting on her fingers. When she unlaced her shoes, I said she could stop as I got the picture.
There is some waiting before you get chemo because the doctor writes the order and the MSK pharmacy fills it on the spot. This usually takes about 90 minutes. The nurse brought Rob and I to a room with a reclining chair (the big chemo chair) a bed and a couple of other chairs. Fortunately, our room had an exterior window and Rob & I both enjoyed the bright sunshine and view down 3rd Avenue. The nurse killed the time by setting up my port with an IV and tapping a vein for some blood draws.
The chemo arrives in big bag full of smaller bags. The nurses take out the bags and read off the dosages and my name & serial number and then enter them into a computer in the room. This way we all know these are my drugs. I started with 6 little pills (2 different anti-nausea meds. At least one is a steroid and I’ve heard other patients say it makes you feel “good” for a few days and then you crash. These meds were Zofran and Decadron.). Next I had a two hour infusion of Oxaliplatin and Leucovorin. Then we had a quick IV push of 5FU before going to 10 minutes of Avastin. Then, I took a 30 minute chemical break before we finished off with my mystery bag which is labeled to say “this is either the experimental stuff or placebo but we’re not telling”. The last drip took 1 hour. As mentioned above, between each drug we drew some blood for analysis.
And then finally, we are on to the 48 hour “pump”. I will continue to take 5FU by slow infusion for 48 hours. To do this, they leave the port in my chest connected to what basically looks like a baby bottle. The bottle has a balloon in it filled with 5FU. When the balloon is completely deflated – about 46 to 48 hours later – I return to MSK to have the port disconnected. In the meantime, I have a very fashionable baby-bottle holder to attach to a belt loop or wear on a strap around my waist with a thin line going up to the port. I do believe that in the future, this technique will be adopted by America’s youth, much like the iPod nano, to infuse themselves with their own personal nutritional concoctions of choice. And the holders will be a fashion rage, created by the finest designers. You wait – I said it first!
During the treatment, I mostly dozed or read the paper. I also ate my complimentary turkey sandwich. Rob ordered off a menu she needed to pay for (hey, yesterday was free birthday lunch day!). We also made calls to our health insurer since it’s “open enrollment” time and we want to make sure we pick a plan that covers all my stuff. Never a better time to be on hold for all those voice response systems than when you’re lazing around in your big chemo chair.
After all the drugs, I got a quick ECG to make sure the heart still works (it does) and we were out of there (it was about 4:40 pm). We got there at 8:15 am.
A quick note about side effects: Not a single tinge of nausea so far (yeah, baby!). I do have an immediate reaction to the Oxaliplatin called neuropathy. This is a pins & needles feeling in the fingers and toes along with a very strong sensitivity to cold. Walking the 100 yards from the train to my car in about 30 degree weather felt like a trip to the artic. I’m going to have to bundle up for work tomorrow! I also have a strange (but very sharp) pain in my jaw when I eat but it goes away after a minute or so. And, cold drinks are painful to my throat so drinks are better at room temperature. Not-too-hot tea is fine, though. Alright, I’m done whining now….
So that’s the story. Now you know what a day of chemo is like in the Big Chair. I go for round two in two weeks.
Before I get to describing the day, I want to point out that in this entry, I’m going to talk a little about pain and side effects. I don’t plan to turn this blog into a litany of complaints but I do want to document some of the initial things. I’ll start a separate paper log of symptoms, etc for the doctors as part of the treatment’s on-going monitoring.
I’ve also been amazed at the friendliness and kindness of everyone at MSK. From the receptionists to the phlebotomists (look that one up, Sara!) to the nurses and technicians, they all do their best to make it easier to get through the treatments. And the treatments, generally, are a lot of waiting around followed by being poked with a needle or two. Then you get an examination or a ride in a medical device. Clothing is optional…
The agenda for today was blood draw, visit with the oncologist, treatment and an ECG. Since I gave blood yesterday (twice), I questioned whether the draw was needed, but after a couple of calls, I was told that yesterday’s draw was my draw to qualify to be in the study. Today’s draw was my pre-treatment study. As the day went on, I had additional blood drawn after each individual dose was given (I’ll get to the dose sequence later).
To start treatment, I met with Dr. R since Dr. S is not in on Wednesdays. I learned that Dr. S saw 40 patients yesterday! Since he has always taken the time to fully explain things to Rob and me, I can’t imagine how long the day must have been (maybe his on-going patients don’t ask as many questions as we newbies do). Anyway, I liked Dr. R a lot. She too, took the time to talk through things. One issue I’ve had is an on-going acid reflux. I started having the problem sporadically (read: after business dinners involving rich food, wine and coffee) but in the last few months have taken quite a bit of Pepcid AC (without the benefit of rich food, wine or coffee!). In fact, my acid reflux actually showed up on the PET scan a few weeks back! Dr. S yesterday suggested that I start a daily oral anti-acid drug but didn’t write the script. I asked Dr. R today and she wrote a script for Protonix (pantoprazole).
I also asked her about a mild pain I’ve in my stomach for a couple of weeks. I had thought it was related to the ab surgery but everything else has gone away. It actually just feels like a cramp. Based on its location, Dr. R said that it could be pain from one of the liver lesions. I was wondering when I’d feel some symptom from the actual cancer. If it gets worse, I can take something for it but for now, I’ll let it go.
While I'm mentioning scripts, I should note that Dr. S wrote a script yesterday for anti-nausea medicine in case I get that side effect. The drug is Prochlorperazine. This drug will also be on the quiz I mentioned yesterday, so please add it to your notebooks!
So on we went to the 7th floor where they do a lot of the chemo for people in studies. I asked one of the nurses how many studies are going on and she started naming them and counting on her fingers. When she unlaced her shoes, I said she could stop as I got the picture.
There is some waiting before you get chemo because the doctor writes the order and the MSK pharmacy fills it on the spot. This usually takes about 90 minutes. The nurse brought Rob and I to a room with a reclining chair (the big chemo chair) a bed and a couple of other chairs. Fortunately, our room had an exterior window and Rob & I both enjoyed the bright sunshine and view down 3rd Avenue. The nurse killed the time by setting up my port with an IV and tapping a vein for some blood draws.
The chemo arrives in big bag full of smaller bags. The nurses take out the bags and read off the dosages and my name & serial number and then enter them into a computer in the room. This way we all know these are my drugs. I started with 6 little pills (2 different anti-nausea meds. At least one is a steroid and I’ve heard other patients say it makes you feel “good” for a few days and then you crash. These meds were Zofran and Decadron.). Next I had a two hour infusion of Oxaliplatin and Leucovorin. Then we had a quick IV push of 5FU before going to 10 minutes of Avastin. Then, I took a 30 minute chemical break before we finished off with my mystery bag which is labeled to say “this is either the experimental stuff or placebo but we’re not telling”. The last drip took 1 hour. As mentioned above, between each drug we drew some blood for analysis.
And then finally, we are on to the 48 hour “pump”. I will continue to take 5FU by slow infusion for 48 hours. To do this, they leave the port in my chest connected to what basically looks like a baby bottle. The bottle has a balloon in it filled with 5FU. When the balloon is completely deflated – about 46 to 48 hours later – I return to MSK to have the port disconnected. In the meantime, I have a very fashionable baby-bottle holder to attach to a belt loop or wear on a strap around my waist with a thin line going up to the port. I do believe that in the future, this technique will be adopted by America’s youth, much like the iPod nano, to infuse themselves with their own personal nutritional concoctions of choice. And the holders will be a fashion rage, created by the finest designers. You wait – I said it first!
During the treatment, I mostly dozed or read the paper. I also ate my complimentary turkey sandwich. Rob ordered off a menu she needed to pay for (hey, yesterday was free birthday lunch day!). We also made calls to our health insurer since it’s “open enrollment” time and we want to make sure we pick a plan that covers all my stuff. Never a better time to be on hold for all those voice response systems than when you’re lazing around in your big chemo chair.
After all the drugs, I got a quick ECG to make sure the heart still works (it does) and we were out of there (it was about 4:40 pm). We got there at 8:15 am.
A quick note about side effects: Not a single tinge of nausea so far (yeah, baby!). I do have an immediate reaction to the Oxaliplatin called neuropathy. This is a pins & needles feeling in the fingers and toes along with a very strong sensitivity to cold. Walking the 100 yards from the train to my car in about 30 degree weather felt like a trip to the artic. I’m going to have to bundle up for work tomorrow! I also have a strange (but very sharp) pain in my jaw when I eat but it goes away after a minute or so. And, cold drinks are painful to my throat so drinks are better at room temperature. Not-too-hot tea is fine, though. Alright, I’m done whining now….
So that’s the story. Now you know what a day of chemo is like in the Big Chair. I go for round two in two weeks.
11 comments:
Uncle Brian, I'm so happy that you don't have nausea! It seems like you're faring well so far. I hope you get some sleep after such a long day! We love you.
Thanks, Sara Beans! I read your blog (you go girl!). I'm going to bed now - and so should you!!
PS: Tell your Dad I loved his comment - he rocks! As my big brother, I've always looked up to him (and not just because he's 4 inches taller...)
Brian, so far so good! I hope that the nausea stays away and you can keep bundled up and warm. Thinking and praying for you!! - Adriann
Hi Brian and Robbie. Paul and I are following along. Thanks for sharing so much info. It's reassuring to hear about the good care you're getting, and we were glad to hear that you're down to one house. That must have been a relief. Let us know when you're up for a visit, and some more mac n' cheese.
You both are strong. You can do this.
Lots of love, Carolyn
Yeah, Brian!! I love Zofran - used it after an evening of fun and frivolity while on vacation - I would have been in my hotel room all day had it not been for the Zofran! Thanks for posting!! Stay strong
So Zofran is a "recreational chemotherapy"??? BB
Brian,
With all the details, what will I talk to Robbie about on our walks? Like that's ever a problem.....
That said, I am so happy that you're blogging and I can hear your voice as I read. See you soon. I'll be picking up Robbie in a few minutes.
Dear Brian,
Thanks for blogging...its great to "hear" your voice sounding so strong about the whole process. I can't say it was great to call up memories of the big chemo chair, but it was nice to be reminded how wonderful everyone is at MSK..they must have a "fundamentally decent human being" check box on their emploment applications. Sounds like you are chatting everyone up and making yourself generally beloved. Keep up the good work! Love, Kathryn
SO far, so good. We're keeping you in our thoughts.
Brian
What is the nature or extent of the study you are contributing to? In other words the "mystery bag" is chemo or a modifed version? BTW thanks for share the details.
Also for internal body humor you have to watch Fantastic Voyage with Rachel Welch being attached by antibodies!
Hi Brian,
Thanks for sharing this. With what Helene's dad is going through for Melanoma, this helps me understand a bit better what his visits are like. (He's not a blogger.)
Is apple pie on your must eat menu. Let us know, Apple Pie will travel.
Paul and Helene
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