This is was what I posted in my private FB group. Part of the reason I do these updates is to educate. They have also showed me I have a great circle of support
"This is an overdue update. I've been percolating on it mentally for awhile. So, where start? Firstly, I'm okay. No critical issues.
I started a new drug in February. Things went well after they reduced my dose. I had more energy (yay) and carried on. My scans were good. They showed stability in the bones, and they were monitoring another spot. No reason for alarm. My last two or three treatments started hitting me a bit harder, and my bloodwork numbers were starting to rise a bit. The oncologist and GP oncologists weren't concerned. They were though, monitoring. That's a good thing in my view. I had my latest scans (nuclear bone and CT) at the end of August. They showed some progression.
When I saw the GP oncologist after that, I was exhausted and probably looking a bit pathetic. He suggested I skip the next cycle partly because I would already be missing the second treatment in a three week cycle. I was not heartbroken. It also meant I would have the energy to move over to our current park.
I saw my oncologist a few weeks ago and she did change my treatment. She also told me about a genomic study out of Vancouver. I agreed to have her send the application papers. While I was there, she showed me my CT scan. That was pretty cool. I always wondered what they look like. I am so thankful to have this oncologist. She is top of her game with lots of experience. She's also dedicated and two or three steps ahead. I've known her almost seven years and really appreciate both the stability and ability to form a good working relationship with her.
I started my new drug on September 23. This is administered at the chemo clinic on a three week cycle. So, I get treatment on day 1, day 8 and then have a break on day 15. It is a conjugate drug that combines a couple things to do it's work. I understand it. At the same time, too many syllables right now. I was at the clinic for several hours for the first treatment. Treatment involves me taking "premeds" before I go to the clinic. There's an expensive anti-nausea drug that costs $125 for three capsules. Worth every penny. There's also a steroid and another more garden variety anti-nausea med. I'm very thankful for Fair Pharmacare that covers these drugs. When I get to the clinic, the nurse sets up the IV then I get more premeds. Benadryl and another anti-nausea drug. The first infusion of the treatment drug was administered over three hours. They do this to monitor things like allergic reactions and such. I was fine. The second infusion on day 8 is given over an hour after the IV premeds.
If I gave into the Benadryl afternoon nap when I got chemo before, the steroid would kick in at bedtime, like a big cup of strong coffee. Not with this one. I'm thankful because sleep is needed. The side effects of this drug have been challenging. Ive felt weak and wobbly, like an old lady. I've appreciated a good hand rail. I helped Steve turn our stick vacuum into a handheld. He did the actual work. It exhausted me. I haven't had nausea though I did take the "rescue" med to stave it off. I was fine. My guts have not been happy. I'm feeling closer to what passes as normal now. I can at least go out and do things. On a positive note, the neuropathy in my hands and feet from the last drug has mostly gone away. What a relief.
Some of you know, I've been accepted into a genomic study out of Vancouver. I've had the first visit with one of the oncologists by phone. I have a Zoom call with a nurse tomorrow to sign consents. I've been referred for a biopsy, which will happen at VGH in Vancouver. Hopefully soon. They will take the tissue and analyze it. They are looking for mutations in the DNA that will help ideally determine the best course of treatment. It's quite an exciting program. Still, one day at a time. It doesn't always work out.
The last couple months have been a challenge. I've had low energy and have generally felt like crap. My respiratory system did not like the wildfire smoke that rolled in in August. The steroid I got nipped the last few feathers in my airway, so that's a bonus.
I see the GP oncologist on Friday. I expect my dose will be reduced. Hopefully that helps.
Onwards and forward."
"This is an overdue update. I've been percolating on it mentally for awhile. So, where start? Firstly, I'm okay. No critical issues.
I started a new drug in February. Things went well after they reduced my dose. I had more energy (yay) and carried on. My scans were good. They showed stability in the bones, and they were monitoring another spot. No reason for alarm. My last two or three treatments started hitting me a bit harder, and my bloodwork numbers were starting to rise a bit. The oncologist and GP oncologists weren't concerned. They were though, monitoring. That's a good thing in my view. I had my latest scans (nuclear bone and CT) at the end of August. They showed some progression.
When I saw the GP oncologist after that, I was exhausted and probably looking a bit pathetic. He suggested I skip the next cycle partly because I would already be missing the second treatment in a three week cycle. I was not heartbroken. It also meant I would have the energy to move over to our current park.
I saw my oncologist a few weeks ago and she did change my treatment. She also told me about a genomic study out of Vancouver. I agreed to have her send the application papers. While I was there, she showed me my CT scan. That was pretty cool. I always wondered what they look like. I am so thankful to have this oncologist. She is top of her game with lots of experience. She's also dedicated and two or three steps ahead. I've known her almost seven years and really appreciate both the stability and ability to form a good working relationship with her.
I started my new drug on September 23. This is administered at the chemo clinic on a three week cycle. So, I get treatment on day 1, day 8 and then have a break on day 15. It is a conjugate drug that combines a couple things to do it's work. I understand it. At the same time, too many syllables right now. I was at the clinic for several hours for the first treatment. Treatment involves me taking "premeds" before I go to the clinic. There's an expensive anti-nausea drug that costs $125 for three capsules. Worth every penny. There's also a steroid and another more garden variety anti-nausea med. I'm very thankful for Fair Pharmacare that covers these drugs. When I get to the clinic, the nurse sets up the IV then I get more premeds. Benadryl and another anti-nausea drug. The first infusion of the treatment drug was administered over three hours. They do this to monitor things like allergic reactions and such. I was fine. The second infusion on day 8 is given over an hour after the IV premeds.
If I gave into the Benadryl afternoon nap when I got chemo before, the steroid would kick in at bedtime, like a big cup of strong coffee. Not with this one. I'm thankful because sleep is needed. The side effects of this drug have been challenging. Ive felt weak and wobbly, like an old lady. I've appreciated a good hand rail. I helped Steve turn our stick vacuum into a handheld. He did the actual work. It exhausted me. I haven't had nausea though I did take the "rescue" med to stave it off. I was fine. My guts have not been happy. I'm feeling closer to what passes as normal now. I can at least go out and do things. On a positive note, the neuropathy in my hands and feet from the last drug has mostly gone away. What a relief.
Some of you know, I've been accepted into a genomic study out of Vancouver. I've had the first visit with one of the oncologists by phone. I have a Zoom call with a nurse tomorrow to sign consents. I've been referred for a biopsy, which will happen at VGH in Vancouver. Hopefully soon. They will take the tissue and analyze it. They are looking for mutations in the DNA that will help ideally determine the best course of treatment. It's quite an exciting program. Still, one day at a time. It doesn't always work out.
The last couple months have been a challenge. I've had low energy and have generally felt like crap. My respiratory system did not like the wildfire smoke that rolled in in August. The steroid I got nipped the last few feathers in my airway, so that's a bonus.
I see the GP oncologist on Friday. I expect my dose will be reduced. Hopefully that helps.
Onwards and forward."
