It's going to take a bit longer to grieve the loss of a treatment that had seemed like the greatest opportunity to nail Amanda's ovarian cancer forever.
The much-ballyhooed treatment that we'd put so much hope into as the best chance to extend Amanda's life is no longer an option, thanks to complications from the very same treatment.
I've written here about intraperitoneal chemotherapy -- IP chemo, aka IPHC or HIPEC -- and how it's done: a port is surgically implanted to pour intense doses of cell-killing chemicals into the abdominal cavity in hopes of bathing any stray cancer cells and remaining tumours in a toxic bath. Better to soak the bad guys in the killer juice directly, the theory goes, than to flush the whole body with with harsh chemicals in the hope that some of it will reach the target.
In Amanda's case, some of the chemo fluid seems to have leaked from the port site into surrounding tissue during one of the two IP treatments she was given. That's led to some significant inflammation and more pain than she's ever experienced before. It's like she's been burned from the inside out. Everyone's surprised at how much even the slightest touch causes her intense pain.
She was admitted to hospital last Thursday after spiking a fever. The doctors found the source of the infection and have been treating it, but are also taking the opportunity to explore that hard, swollen, painful mass in her belly and try to get a handle on her pain for the first time in nearly two months.
The doctors considered Amanda's bad reaction to the chemo leak and made the tough decision that she won't be getting any more IP chemo. This was devastating news, since she's been reading studies that show a significant improvement in life expectancy with each course of IP treatment. She's been pleading with them to keep going with IP even if it hurts. This was the great hope. Now it's not even a maybe. It's not happening.
But the docs say the risk of further damage is too high, and that another leak would mean an end to chemo entirely.
So, there's a new plan. It's going to be aggressive. As I understand it, this will mean chemotherapy every week for the next month or two, instead of two out of three weeks. This all hinges on her blood counts remaining at safe levels, and side effects being kept within safe limits. She has been experiencing side effects, obviously -- her hair fell out (but has come back somewhat), she's had awful bone and joint pain, and she's losing feeling in her feet.
They won't just be giving her more frequent treaments -- they're even talking about giving an extra one. What kind of person sees an extra dose of toxic chemicals being infused into her body, attacking her bone marrow, kidneys, skin, nerves and blood supply as a "BONUS TREATMENT"? Our Amanda, of course. Gutsy broad.
Blood counts became a concern this week. While Amanda's white blood cell counts were better than expected, her hemogoblin levels had fallen below a safe threshold. She'd be given a transfusion for the first time in her life. It was hoped she'd get some kind of energy boost from that, but she's still tired and logy. (I refuse to say hemoglobin and instead say hemogoblin. Because it's fun, so shut up.)
The painkillers are also knocking her back. She'd gone way too long without adequate pain management. Imagine the worst pain in your life, but it goes on all day, every day, and no one seems to be helping. Really, to be fair to the docs, I don't think they were told how bad it was and how little relief she was getting. Now that they know, they don't want to send her home until the right dose is found. So far they're up to 2.5 times what she was taking at home and she's still hurting.
We're also going to work on limiting her activity at home so she doesn't overextend herself and miss a dose, or push too hard and aggravate the sore spots.
One piece of good news is a port of a different sort.
Welcome the PICC -- a peripherally inserted central catheter. In her case, a SUPER PICC!!!!!!11!!!!
Up at the top of this post, there's a picture of Amanda's new PICC. Below is a video from someone else.
I mentioned before that it's been awful to watch Amanda poked again and again with failed IV insertions. Well, the PICC is basically an IV that's done once and left in. It's been inserted in her arm and threaded all the way to a place near her heart. Any time they need to give an IV infusion or take blood, they'll just use this little dongle.
So, that's the wrap-up for now: A week in hospital after a fever, and a change in strategy for the last leg of the chemo schedule.
We're all looking forward to having her back home and feeling better!
The much-ballyhooed treatment that we'd put so much hope into as the best chance to extend Amanda's life is no longer an option, thanks to complications from the very same treatment.
I've written here about intraperitoneal chemotherapy -- IP chemo, aka IPHC or HIPEC -- and how it's done: a port is surgically implanted to pour intense doses of cell-killing chemicals into the abdominal cavity in hopes of bathing any stray cancer cells and remaining tumours in a toxic bath. Better to soak the bad guys in the killer juice directly, the theory goes, than to flush the whole body with with harsh chemicals in the hope that some of it will reach the target.
In Amanda's case, some of the chemo fluid seems to have leaked from the port site into surrounding tissue during one of the two IP treatments she was given. That's led to some significant inflammation and more pain than she's ever experienced before. It's like she's been burned from the inside out. Everyone's surprised at how much even the slightest touch causes her intense pain.
She was admitted to hospital last Thursday after spiking a fever. The doctors found the source of the infection and have been treating it, but are also taking the opportunity to explore that hard, swollen, painful mass in her belly and try to get a handle on her pain for the first time in nearly two months.
 |
| Taking a PICC -- Amanda's brand-new dongle that replaces the need for more IV pokes. Plug-and-play access to her deep, bloody insides. |
The doctors considered Amanda's bad reaction to the chemo leak and made the tough decision that she won't be getting any more IP chemo. This was devastating news, since she's been reading studies that show a significant improvement in life expectancy with each course of IP treatment. She's been pleading with them to keep going with IP even if it hurts. This was the great hope. Now it's not even a maybe. It's not happening.
But the docs say the risk of further damage is too high, and that another leak would mean an end to chemo entirely.
So, there's a new plan. It's going to be aggressive. As I understand it, this will mean chemotherapy every week for the next month or two, instead of two out of three weeks. This all hinges on her blood counts remaining at safe levels, and side effects being kept within safe limits. She has been experiencing side effects, obviously -- her hair fell out (but has come back somewhat), she's had awful bone and joint pain, and she's losing feeling in her feet.
They won't just be giving her more frequent treaments -- they're even talking about giving an extra one. What kind of person sees an extra dose of toxic chemicals being infused into her body, attacking her bone marrow, kidneys, skin, nerves and blood supply as a "BONUS TREATMENT"? Our Amanda, of course. Gutsy broad.
Blood counts became a concern this week. While Amanda's white blood cell counts were better than expected, her hemogoblin levels had fallen below a safe threshold. She'd be given a transfusion for the first time in her life. It was hoped she'd get some kind of energy boost from that, but she's still tired and logy. (I refuse to say hemoglobin and instead say hemogoblin. Because it's fun, so shut up.)
The painkillers are also knocking her back. She'd gone way too long without adequate pain management. Imagine the worst pain in your life, but it goes on all day, every day, and no one seems to be helping. Really, to be fair to the docs, I don't think they were told how bad it was and how little relief she was getting. Now that they know, they don't want to send her home until the right dose is found. So far they're up to 2.5 times what she was taking at home and she's still hurting.
We're also going to work on limiting her activity at home so she doesn't overextend herself and miss a dose, or push too hard and aggravate the sore spots.
One piece of good news is a port of a different sort.
Welcome the PICC -- a peripherally inserted central catheter. In her case, a SUPER PICC!!!!!!11!!!!
Up at the top of this post, there's a picture of Amanda's new PICC. Below is a video from someone else.
I mentioned before that it's been awful to watch Amanda poked again and again with failed IV insertions. Well, the PICC is basically an IV that's done once and left in. It's been inserted in her arm and threaded all the way to a place near her heart. Any time they need to give an IV infusion or take blood, they'll just use this little dongle.
So, that's the wrap-up for now: A week in hospital after a fever, and a change in strategy for the last leg of the chemo schedule.
We're all looking forward to having her back home and feeling better!
I hope everything goes ok for you guys.I know what you are going through and it's very hard.My wife had a bad reaction to her chemo and it hit her hard.It's a long journey but I know you guys can do it. You guys are in my prayers God Bless.
ReplyDeleteChuck Carter.
I hope everything goes well for her - my own mother is battling ovarian cancer as well, and I'm kind of her only emotional support myself. Amanda is a brave woman to be fighting cancer, and you're brave for supporting her. I hope everything goes well - you and she aren't alone out here.
ReplyDeleteJohnathan
Thinking of you both, time and patience are the key. Good luck and peace to you both. X
ReplyDelete