Got a good amount of sleep last night. Woke up feeling good. So far the day has been just like any other... just eating, and resting, and staying on my pill schedule. They said I would likely not have any issues for a few days, so I'm not expecting much. But I'm making sure I don't overdo it just in case, and of course staying on top of my meds is essential.
We did get emails confirming my next appointments. I go in for blood work and a follow-up with Dr Kang's office on Friday the 17th, and then round 2 of chemo will be Monday the 20th. We leave for the beach that Friday. Hopefully this round will give us a good indication of what to expect for the trip, in terms of if or when any serious side effects will set in.
That's about it for now... things are thankfully quite uneventful at the moment.
Tuesday, May 31, 2016
Monday, May 30, 2016
First Treatment & Chemo Details
So some people wanted more specifics about my chemo, so for those who are interested here are the details.
I'm receiving Cisplatin and Docetaxel by infusion every 3 weeks. The 4-day pump is called 5-Fluorouracil. They'll hook me up to that before I leave here today, and it will come off again Friday.
Saturday I come back for a Neulasta shot- that will help stimulate my immune system to produce more white cells and platelets to replace those being damaged by the treatments.
They're also giving me lots of IV fluids, as well as anti-nausea meds, steroids, and other stuff to help make me feel better and counteract the side effects of the treatments. I have a goody bag from the pharmacy of more of the same to take home with me. So hopefully we'll be able to keep the side effects under control.
First Treatment:
So far I'm doing well, I've been snacking and drinking the whole time, watching TV and playing with all my gadgets. Really it's not much different from what I'd be doing at home right now, except that I'm here, and there's a needle in my chest. We came very well prepared, a cooler full of food, my notebooks for writing, coloring books, phone, computer, etc. I'm in my flannel jammies with my fuzzy slippers for comfort. I have my heating pad, and multiple pillows. There's even a TV in my nook. I can't complain at all in terms of general comfort. So far the treatment hasn't bothered me much either, although it may set in worse as time goes on. But right now, doing good!
:-)
I'm receiving Cisplatin and Docetaxel by infusion every 3 weeks. The 4-day pump is called 5-Fluorouracil. They'll hook me up to that before I leave here today, and it will come off again Friday.
Saturday I come back for a Neulasta shot- that will help stimulate my immune system to produce more white cells and platelets to replace those being damaged by the treatments.
They're also giving me lots of IV fluids, as well as anti-nausea meds, steroids, and other stuff to help make me feel better and counteract the side effects of the treatments. I have a goody bag from the pharmacy of more of the same to take home with me. So hopefully we'll be able to keep the side effects under control.
First Treatment:
So far I'm doing well, I've been snacking and drinking the whole time, watching TV and playing with all my gadgets. Really it's not much different from what I'd be doing at home right now, except that I'm here, and there's a needle in my chest. We came very well prepared, a cooler full of food, my notebooks for writing, coloring books, phone, computer, etc. I'm in my flannel jammies with my fuzzy slippers for comfort. I have my heating pad, and multiple pillows. There's even a TV in my nook. I can't complain at all in terms of general comfort. So far the treatment hasn't bothered me much either, although it may set in worse as time goes on. But right now, doing good!
:-)
Saturday, May 28, 2016
Port & Chemo Updates
The port installation went very smoothly yesterday. I spent the night very comfortably and woke up feeling normal. With the exception of a little tenderness in the immediate area, I feel very good. From now on they'll be able to draw blood and administer chemo through this port without having to mess with my veins any more, which will be a nice break for my poor arms.
Some updates on my chemo, which starts this Monday (May 30th):
Unless Dr Kang changes something, I'll be receiving 3 chemo drugs. It will be one treatment every 3 weeks. The first appt is scheduled to last 6 hours, I don't know if that will be the norm. One of the drugs he mentioned involved a 4-day pump for each treatment, the other 2 will be administered during the 6 hour infusion sessions. I will be going to Hopkins for these treatments. Someone from their home care service will be coming to the house on the 4th day from treatment to remove the pump. As far as I know, it will be hooked up while I'm at the infusion center.
We have no indication yet of how long I'll be receiving chemo. I imagine that they'll be doing various CT/PET scans periodically during my treatment to assess our progress. And we will still be looking into that clinical trial as soon as Dr Kang thinks my condition is stable enough.
Yes, I will probably lose my hair. No, please do not shave your heads for me. Next week, as soon as I'm feeling up to it after my treatment, I'll be going in to get it cut short so that when it starts going it won't look so bad. They said it will probably be a few weeks after my first treatment when it will start to go.
Ty and I have spent a lot of time preparing for these treatments. We are stocked up on good foods (I even get to relax my sugar restrictions a little, as long as I'm eating something). We'll be bringing laptops, books, games, and other activities to the chemo sessions. In the event that he can't be at one, I'll be reaching out for volunteers to keep me company, but for now we're good on that front.
Some updates on my chemo, which starts this Monday (May 30th):
Unless Dr Kang changes something, I'll be receiving 3 chemo drugs. It will be one treatment every 3 weeks. The first appt is scheduled to last 6 hours, I don't know if that will be the norm. One of the drugs he mentioned involved a 4-day pump for each treatment, the other 2 will be administered during the 6 hour infusion sessions. I will be going to Hopkins for these treatments. Someone from their home care service will be coming to the house on the 4th day from treatment to remove the pump. As far as I know, it will be hooked up while I'm at the infusion center.
We have no indication yet of how long I'll be receiving chemo. I imagine that they'll be doing various CT/PET scans periodically during my treatment to assess our progress. And we will still be looking into that clinical trial as soon as Dr Kang thinks my condition is stable enough.
Yes, I will probably lose my hair. No, please do not shave your heads for me. Next week, as soon as I'm feeling up to it after my treatment, I'll be going in to get it cut short so that when it starts going it won't look so bad. They said it will probably be a few weeks after my first treatment when it will start to go.
Ty and I have spent a lot of time preparing for these treatments. We are stocked up on good foods (I even get to relax my sugar restrictions a little, as long as I'm eating something). We'll be bringing laptops, books, games, and other activities to the chemo sessions. In the event that he can't be at one, I'll be reaching out for volunteers to keep me company, but for now we're good on that front.
I won't say I'm *excited* exactly? to start chemo, but I'm glad that it's starting. It needs to happen, and getting healthy is my end goal, so I'm prepared to do whatever needs doing. I'm in overall good health- other than the soreness in my back, I feel quite good. And I'm in very good spirits, thanks to my wonderful friends and family- the constant flow of good thoughts and prayers is doing more than you can imagine.
The rest of this weekend will be focused on resting and staying well fed and hydrated. I get to sleep in Monday, my appointment isn't until 12:30pm, so I can rest up, eat a good breakfast, and then get on the road.
I will up date as soon as I'm feeling up to it after my treatment.
Thursday, May 26, 2016
The Wheels Are Turning
Well, here we go!
Got some blood work done today, tomorrow I go up to Hopkins to have my chemo port installed. I don't have an appointment set for chemo yet, but we're trying to get me in on Monday. I've cleared my work schedule until June 6th, the house is in order, my grocery shopping is done. I'm as ready as I'll ever be. Let's get this show on the road!
Got some blood work done today, tomorrow I go up to Hopkins to have my chemo port installed. I don't have an appointment set for chemo yet, but we're trying to get me in on Monday. I've cleared my work schedule until June 6th, the house is in order, my grocery shopping is done. I'm as ready as I'll ever be. Let's get this show on the road!
Tuesday, May 24, 2016
Preparations
Spending the beginning of this week preparing for my first treatment. I'm getting the house in order, catching up all the housework, laundry, linens, etc., and going grocery shopping. My hope is that I'll have things taken care of so that if the treatment does knock me on my ass, I'll be okay to spend a few days in bed without things falling apart around the house. I got a good start on it yesterday, today I'm going to finish up the rest of it, go shopping, stock up on cat food, and so forth. I think it will help a lot if I'm not stressing about chores while I'm trying to recuperate.
Hoping that tomorrow I'll hear back from Dr Kang on when the exact time and day will be.
Hoping that tomorrow I'll hear back from Dr Kang on when the exact time and day will be.
Monday, May 23, 2016
Starting Treatment
Dr, Kang contacted me this morning after reviewing the scans from last week, and suggested that we go ahead and start chemo this week. I don't have a specific day yet, still waiting to hear from him again with more information. I'll be spending the next couple of days getting the house and shop prepared for any down time I have to take.
Monday, May 16, 2016
Testing & Clinical Trial Updates
I have 2 tests scheduled this week. This morning (Monday) I had an MRI done on my nasal tract to check for tumors. Wednesday afternoon I have another chest CT scan to try to get an idea of the growth rate of the chest tumors. I'm not sure when I'll get information back about either of those- at the moment our next follow-up with Dr Kang is not until the 27th.
We also got an information packet for a clinical drug trial out of Sloan Kettering Hospital in New York. They're running a small phase 2 trial that includes the rare type of tumor I have (INI1 Deficient). It's encouraging that someone is working on this type of cancer since it affects so few people. I sent the basic information to Dr Kang and am hoping that we can discuss it with him soon and decide if it's a good idea for me to enter into it or not.
So, as always- still waiting. But I'm in good health and humor, and at least I feel like there's finally some forward momentum happening.
We also got an information packet for a clinical drug trial out of Sloan Kettering Hospital in New York. They're running a small phase 2 trial that includes the rare type of tumor I have (INI1 Deficient). It's encouraging that someone is working on this type of cancer since it affects so few people. I sent the basic information to Dr Kang and am hoping that we can discuss it with him soon and decide if it's a good idea for me to enter into it or not.
So, as always- still waiting. But I'm in good health and humor, and at least I feel like there's finally some forward momentum happening.
Thursday, May 12, 2016
Johns Hopkins Updates
Well, we're getting closer!
Dr Kang at Johns Hopkins is reasonably certain that what we're dealing with is a rare sinonasal cancer. We're doing one more MRI this coming Monday to examine my sinuses and see if they can find anything unusual to biopsy in order to be 100% positive, but all the information he has is that this is looking like sinonasal. He also ordered another chest CT in order to see how fast the tumors are growing. All this information will help him decide exactly how aggressive to be with my treatment. Right now, his working plan involves chemotherapy with 3 separate drugs, administered on a 3 week schedule, and at some point some radiation for the bone areas. This is not confirmed yet though, he just mentioned it as what he's looking at right now based on his current information. The two tests are Monday & Wednesday, and we have a follow-up with him the following Friday. That appointment is subject to change depending on the results from these tests.
I'm a little disappointed that we're not moving faster, but I know that getting the right answer is more important than rushing into treatment, so I'm trying to be patient. I appreciate all the love and good thoughts that have been flowing in from all directions.
Will keep you posted!
Dr Kang at Johns Hopkins is reasonably certain that what we're dealing with is a rare sinonasal cancer. We're doing one more MRI this coming Monday to examine my sinuses and see if they can find anything unusual to biopsy in order to be 100% positive, but all the information he has is that this is looking like sinonasal. He also ordered another chest CT in order to see how fast the tumors are growing. All this information will help him decide exactly how aggressive to be with my treatment. Right now, his working plan involves chemotherapy with 3 separate drugs, administered on a 3 week schedule, and at some point some radiation for the bone areas. This is not confirmed yet though, he just mentioned it as what he's looking at right now based on his current information. The two tests are Monday & Wednesday, and we have a follow-up with him the following Friday. That appointment is subject to change depending on the results from these tests.
I'm a little disappointed that we're not moving faster, but I know that getting the right answer is more important than rushing into treatment, so I'm trying to be patient. I appreciate all the love and good thoughts that have been flowing in from all directions.
Will keep you posted!
Thursday, May 5, 2016
Updates
We didn't get as much information from our Tuesday appointment as we were hoping for, but we did get some.
My MRI came back clean- no brain tumors.
The bone biopsy came back positive, for the same type of cells they found in my chest.
Unfortunately they still haven't made a positive ID of what we're dealing with.
The good news is, next Tuesday we have our first appointment at John's Hopkins. Hopefully by then we'll have some answers, and be able to start formulating a game plan.
Keep those prayers coming! Love you guys.
My MRI came back clean- no brain tumors.
The bone biopsy came back positive, for the same type of cells they found in my chest.
Unfortunately they still haven't made a positive ID of what we're dealing with.
The good news is, next Tuesday we have our first appointment at John's Hopkins. Hopefully by then we'll have some answers, and be able to start formulating a game plan.
Keep those prayers coming! Love you guys.
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