I've now taken 3 doses of the new medication. Still feeling completely fine- no side effects whatsoever. I just got my 24-hour follow up phone call from the hospital, and I emailed Dr Kang earlier to let him know that we were officially started.
So other than being tired- which is due to getting very little sleep after our late trip home last night- I feel good today.
Cheers!
Thursday, September 29, 2016
Wednesday, September 28, 2016
Drug Trial Cycle 1- Day 1
Getting ready to head back to Maryland! It's been a long but good day.
We started off the morning with another set of labs (just blood and vitals, no scans this time). Then we got a break while they processed everything and we grabbed some breakfast. Around 1pm, I took my first dose of the trial medication. Then we stayed in a treatment suite for 6 hours, during which time they took blood and EKGs at certain intervals to measure any reactions I might be having to the drug. At the end of the 6 hour period, they gave me the medication for the next 2 weeks, and we went and had dinner.
Our next appointment is October 10th. Between now and then, I have to take 4 pills twice per day and keep a record of each dose on a form they gave me. On the 10th, I'll go back, get more baseline lab work, take another dose there, and we'll do the whole thing over again. If I'm reading the paperwork correctly, this is only for the first cycle (which comprises 28 days and these 2 visits). After that, it sounds like the visits will be much shorter and simpler. It doesn't specify when they'll be doing more CT or PET scans; I'm not sure if they do that regularly or if it's at the discretion of the doctors.
So far, I feel completely fine and normal. The side effects of this drug so far recorded have been few and mild, so they were not expecting any severe reactions.
So that's where we're at! Officially on the new treatment- please send prayers and positive thoughts that it will do it's job well!
Just waiting for our car now and we'll be on our way home.
We started off the morning with another set of labs (just blood and vitals, no scans this time). Then we got a break while they processed everything and we grabbed some breakfast. Around 1pm, I took my first dose of the trial medication. Then we stayed in a treatment suite for 6 hours, during which time they took blood and EKGs at certain intervals to measure any reactions I might be having to the drug. At the end of the 6 hour period, they gave me the medication for the next 2 weeks, and we went and had dinner.
Our next appointment is October 10th. Between now and then, I have to take 4 pills twice per day and keep a record of each dose on a form they gave me. On the 10th, I'll go back, get more baseline lab work, take another dose there, and we'll do the whole thing over again. If I'm reading the paperwork correctly, this is only for the first cycle (which comprises 28 days and these 2 visits). After that, it sounds like the visits will be much shorter and simpler. It doesn't specify when they'll be doing more CT or PET scans; I'm not sure if they do that regularly or if it's at the discretion of the doctors.
So far, I feel completely fine and normal. The side effects of this drug so far recorded have been few and mild, so they were not expecting any severe reactions.
So that's where we're at! Officially on the new treatment- please send prayers and positive thoughts that it will do it's job well!
Just waiting for our car now and we'll be on our way home.
Friday, September 23, 2016
The Date Is Set!
Next Wednesday, September 28th, we go back to NYC to meet with the docs and start my treatment!
They've already scheduled me for my first follow-up on Monday Oct. 10th as well. We'll be on a 2-week schedule for a few months, until they determine that I can go to a monthly schedule instead. I'm not entirely sure yet what the 2 week follow-ups will entail- I know I'll be getting frequent scans, but I'm not sure if that's EVERY 2 weeks, or if every 2 weeks is just a regular follow-up appointment and they'll scan when they feel like it. We'll probably get those types of answers when we go up on the 28th.
We got our copies of my CT and PET scans, but without the reports (which aren't finished yet) we're not entirely sure what we're looking at yet, so I'll hold off on any commentary about that until we get the reports in. Hopefully they're the same or better than my last set of scans, which was between rounds 2 and 3 of chemo.
I'll update again when the reports come in, or after the 28th, whichever comes first!
They've already scheduled me for my first follow-up on Monday Oct. 10th as well. We'll be on a 2-week schedule for a few months, until they determine that I can go to a monthly schedule instead. I'm not entirely sure yet what the 2 week follow-ups will entail- I know I'll be getting frequent scans, but I'm not sure if that's EVERY 2 weeks, or if every 2 weeks is just a regular follow-up appointment and they'll scan when they feel like it. We'll probably get those types of answers when we go up on the 28th.
We got our copies of my CT and PET scans, but without the reports (which aren't finished yet) we're not entirely sure what we're looking at yet, so I'll hold off on any commentary about that until we get the reports in. Hopefully they're the same or better than my last set of scans, which was between rounds 2 and 3 of chemo.
I'll update again when the reports come in, or after the 28th, whichever comes first!
Wednesday, September 21, 2016
Almost There!
Well I won't say yesterday was fun, but, we got everything done anyway. Blood work, EKG, echo-cardiogram (ultra-sound of the heart), CT scan, PET scan, plus a regular exam and meeting with the trial docs. My system is currently full of contrast dyes and radioactive sugar. Yay me!
None of the results are back yet except the blood work, which looks normal. All the other stuff will probably take a few days. They're also mailing us copies of the scans on disk to add to our ever-growing collection.
So now we wait. They'll be giving us our date for next week soon, hopefully that will just be an up-and-back trip with no overnight; it sounds like they're willing to cover train tickets for both of us, which would be great.
So, that's all for now. Sometime in the next 10 days I'll be starting my new meds. And then it will be follow-ups every 2 weeks for a couple months to see how it's progressing.
So excited for real progress!
None of the results are back yet except the blood work, which looks normal. All the other stuff will probably take a few days. They're also mailing us copies of the scans on disk to add to our ever-growing collection.
So now we wait. They'll be giving us our date for next week soon, hopefully that will just be an up-and-back trip with no overnight; it sounds like they're willing to cover train tickets for both of us, which would be great.
So, that's all for now. Sometime in the next 10 days I'll be starting my new meds. And then it will be follow-ups every 2 weeks for a couple months to see how it's progressing.
So excited for real progress!
Monday, September 19, 2016
Testing, Testing...
Well, we just arrived in NYC for the next phase in our drug trial journey. Tomorrow I spend the day meeting with doctors again, and getting various tests/scans/blood work/etc. done all day. I have to get up early and have a big breakfast, because after 11am, it's nothing but water until after my scan at 5:15pm. :-( I'm not a fan of the starvation scans, but, they're necessary.
The drive up was super easy, we made it in just over 3 hours. The trip was sort of spur-of-the-moment: we were originally planning to wake up really early tomorrow and drive up. But that would have meant waking up around 4am and leaving at 5am and hoping that traffic was in our favor. We found a great last-minute deal on Hotwire, at a hotel just a couple blocks from the hospital, so we snagged it, threw our stuff together, and hit the road about 20 minutes after deciding to go for it. :-P It was actually kind of a fun little adventure.
After we checked in, we promptly took a walk to our favorite little bar and had a nightcap and some of their awesome Belgian frites for a midnight snack. We're going to stop back by for dinner before we head out of town tomorrow night. It's such a fun little place, and the food is great.
Anyway, just winding down for the evening, after all that we'll still get nearly 8 hours of sleep before we have to wake up tomorrow. So much better than waking up at 4am! This was definitely a good idea.
Tomorrow won't really bring much news, but I'll post an update after we're finished anyway!
The drive up was super easy, we made it in just over 3 hours. The trip was sort of spur-of-the-moment: we were originally planning to wake up really early tomorrow and drive up. But that would have meant waking up around 4am and leaving at 5am and hoping that traffic was in our favor. We found a great last-minute deal on Hotwire, at a hotel just a couple blocks from the hospital, so we snagged it, threw our stuff together, and hit the road about 20 minutes after deciding to go for it. :-P It was actually kind of a fun little adventure.
After we checked in, we promptly took a walk to our favorite little bar and had a nightcap and some of their awesome Belgian frites for a midnight snack. We're going to stop back by for dinner before we head out of town tomorrow night. It's such a fun little place, and the food is great.
Anyway, just winding down for the evening, after all that we'll still get nearly 8 hours of sleep before we have to wake up tomorrow. So much better than waking up at 4am! This was definitely a good idea.
Tomorrow won't really bring much news, but I'll post an update after we're finished anyway!
Friday, September 16, 2016
No Chemo Next Week!
We're still not ready to say 100% that I'm done with chemo, but, Dr Kang said that since we seem to be very close on the drug trial, we can postpone further treatments for the time being.
We have been in touch with SK, and they know that our insurance was approved and are currently working on putting together the list of tests they need to run on me and getting those scheduled. We don't have a date yet, but it is definitely in the works. We did let them know that my wash-out date is the 23rd, and that I was supposed to be due for another round of chemo already, so they know that we're on a tight schedule and hopefully they will get us in quickly to avoid me having to go back for more treatments.
My pneumonia is pretty much cleared up, I still have a little congestion but I'm feeling a lot better. My taste buds are slowly returning. Overall, feeling pretty decent.
Will post again as soon as we get an NYC date!
We have been in touch with SK, and they know that our insurance was approved and are currently working on putting together the list of tests they need to run on me and getting those scheduled. We don't have a date yet, but it is definitely in the works. We did let them know that my wash-out date is the 23rd, and that I was supposed to be due for another round of chemo already, so they know that we're on a tight schedule and hopefully they will get us in quickly to avoid me having to go back for more treatments.
My pneumonia is pretty much cleared up, I still have a little congestion but I'm feeling a lot better. My taste buds are slowly returning. Overall, feeling pretty decent.
Will post again as soon as we get an NYC date!
Friday, September 9, 2016
Best Day Ever
We got the call! Our insurance company has approved my treatment at Sloan-Kettering. That was the last obstacle in our path. Now we can move forward.
Monday we're going to call SK and find out when they want us to come up. Right now, Sept 23rd is the first day I'm eligible to start the trial medication. They may have us come up sooner to get the scans done, we're not sure yet.
Obviously this is great news. It's very likely that I will not have to do anymore chemo. My tastebuds are currently recovering well, and it's definitely nice to think that I won't lose them again. Or take another week off work. Or a million other things.
Updates will be posted as fast as we get them. Love you guys.
Oh, and to top off this awesome day? My incredible husband got a raise. :-) It's been a really good day.
Monday, September 5, 2016
Happy Labor Day
Well it appears I spoke too soon on Thursday- although chemo went easier this time, the cold I had been developing right before my treatment flared into a nasty chest cold as my immune system started dipping. Last couple days were pretty rough, but they've got me on a bunch of meds now and I'm happy to say I'm on the mend. I took an extra day at home today, but I'll be back to work tomorrow. I have a short week at work, we're leaving Friday afternoon to go down to Ty's family lake house and hang out with some of his family for the weekend. Ruff will enjoy it, he can swim off the dock.
I was supposed to be getting more Zometa on Tuesday, but between my illness and some scheduling issues I've cancelled that. There's not a strict schedule for it, patients receive treatments anywhere from 4-12 weeks apart, and this was only going to be 4 weeks, so I just asked them to let me delay it a couple weeks until I'm feeling up to more treatments. If I have to get another round of chemo, maybe we'll do it then. If Sloan-Kettering calls first, we'll just get it scheduled when we can.
We did get a call from them on Friday. Nothing big, just our case manager introducing herself and letting us know that she was working on our insurance requests. I believe she said they were sending the papers out that day, so hopefully we can start looking for a phone call in the next week or two. She was very nice- if you have need for a clinical cancer trial, I strongly recommend Sloan Kettering. We have been nothing but pleased with their staff and even though the process is taking longer than we hoped, I don't think it's anything against them, they seem to be working as fast as they can.
Well my Sudafed and Oxycodone are beginning to interact in fun ways, so I'm going to stop trying to type now and just zone out in front of the TV for a bit. :-P Keep the prayers coming!! Love you guys.
I was supposed to be getting more Zometa on Tuesday, but between my illness and some scheduling issues I've cancelled that. There's not a strict schedule for it, patients receive treatments anywhere from 4-12 weeks apart, and this was only going to be 4 weeks, so I just asked them to let me delay it a couple weeks until I'm feeling up to more treatments. If I have to get another round of chemo, maybe we'll do it then. If Sloan-Kettering calls first, we'll just get it scheduled when we can.
We did get a call from them on Friday. Nothing big, just our case manager introducing herself and letting us know that she was working on our insurance requests. I believe she said they were sending the papers out that day, so hopefully we can start looking for a phone call in the next week or two. She was very nice- if you have need for a clinical cancer trial, I strongly recommend Sloan Kettering. We have been nothing but pleased with their staff and even though the process is taking longer than we hoped, I don't think it's anything against them, they seem to be working as fast as they can.
Well my Sudafed and Oxycodone are beginning to interact in fun ways, so I'm going to stop trying to type now and just zone out in front of the TV for a bit. :-P Keep the prayers coming!! Love you guys.
Thursday, September 1, 2016
Round 4: Thursday
Hey blog fans! Just checking in. Still doing good, this round is definitely going easier than last round. We may never know exactly what made last round so rough, but, since this round is going easier I won't question the whys and wherefores. :-)
Tomorrow afternoon the pump comes off (yay freedom!) and Saturday it's back to Hopkins for my Neulasta shot. Then the rest of the weekend is for resting, and back to work on Monday.
Tuesday I go back to get the Zometa (bone strengthening) treatment. Hopefully that's not what made last round suck, cause otherwise my work week is going to be a little rough. But we'll see. I'm hopeful. Been taking it really easy, staying well fed and hydrated and out of the sun, so hopefully all that will work in my favor.
Still waiting to hear news from Sloan-Kettering. They said the insurance process could take a few weeks, so there's no reason to be alarmed. Just waiting patiently. I'm sure we'll touch base with them soon.
So that's about it- doing good, hanging in there, carrying on with life as always. Thanks as always for all the thoughts and prayers. <3
Tomorrow afternoon the pump comes off (yay freedom!) and Saturday it's back to Hopkins for my Neulasta shot. Then the rest of the weekend is for resting, and back to work on Monday.
Tuesday I go back to get the Zometa (bone strengthening) treatment. Hopefully that's not what made last round suck, cause otherwise my work week is going to be a little rough. But we'll see. I'm hopeful. Been taking it really easy, staying well fed and hydrated and out of the sun, so hopefully all that will work in my favor.
Still waiting to hear news from Sloan-Kettering. They said the insurance process could take a few weeks, so there's no reason to be alarmed. Just waiting patiently. I'm sure we'll touch base with them soon.
So that's about it- doing good, hanging in there, carrying on with life as always. Thanks as always for all the thoughts and prayers. <3
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