Chemo Works or I How Lost 40 Lbs in 4 Weeks
First of all, welcome to my new blog! I decided to start a new one to reflect my new diagnosis (hopefully I won't have to do this again in 4 years!). I went with 'Prose for POEMS' instead of 'Poetry for POEMS' because the idea of poetic updates terrifies me. My poetry days ended with the angst of adolescence. If you missed my last post or are new to this, please feel free to take a trip down memory lane at https://workingcidp.blogspot.com/.
I finished my first chemo 'cycle' this week and figured I'd share some thoughts on how it is going so far. There are many types of chemotherapy out there and many different dosing schedules. I'm doing a modified version of a regimen called CyborD, which was designed for multiple myeloma patients as a preparation for stem cell transplants. Apparently it is also very effective for POEMS patients. So what is CyborD? Well, it's a combination of two chemo drugs -- Cyclophosphamide (taken as pills) and Bortezomib (given as an injection), and a steroid -- Dexamethasone (also pills). I take all three once a week at the cancer centre. I also get weekly blood work and a check-in with a Nurse Practitioner to make sure I'm on track. I will go through 4 cycles, each 4 weeks long, so 16 weeks total.
As far as chemo goes I think I'm getting off fairly lightly. For one thing, my hair is (at least so far) hanging on. For another, I don't need to spend hours hooked up to an IV. My side effects are also really not that bad. I don't want anyone who has been through rough chemo to think that I don't appreciate how lucky I have been so far. I'll get the real deal when I go for the stem cell transplant though, so I'll enjoy the easier ride while I can.
What do I make of my first cycle? Let's start with the good. As the title of this post implies, I've lost Floyd, my fluid baby! I have lost so much weight (all fluid) that they had to adjust my dose this week. I'm no longer all topsy-turvey and bloated. This has improved my mobility significantly, although I kind of look like a plucked chicken and need to do some serious muscle toning. Now, you may think that this is a great weight-loss program but there are better ways to do it. I basically spent a year not eating and gaining weight, then started treatment and eating and lost it. I'm sure the scales will (literally) even out eventually. My weight has been a rollercoaster since all this began almost 5 years ago. I've learned to roll with it and keep an array of sizes in my closet. I may treat myself to some new skinny jeans though.
Possibly more importantly my blood work is improving. I was in pretty dire shape a few months ago with some troubling blood chemistry. I'm not going into specifics here as I hope the numbers will mean as little to you as they did to me a few months ago. However, after months and months of not being sure how to fix things, they are starting to turn around. I'm still anemic and am eating my weight in Tums every day to keep up my calcium, but things are much better. Counts are going up where they should and down where they should. So far my one good vein for blood work is even holding up (this is a miracle in itself)!
Another sign that things are working is that my cherry hemangiomas (red moles) are starting to fade and shrink. I've had these red moles for at least twenty years but they really started to spread and grow 6 years ago or so. They may, in fact, be my first POEMS symptom, though they are not uncommon on their own. Anyway, I noticed the other day that some have disappeared entirely, while others are smaller and faded in colour. I've also noticed that my hands and feet are less purple. These both relate to the 'S' of POEMS - skin changes.
Now it isn't all roses. Chemo, even a fairly light regimen, is still pretty hardcore. I have side effects. I'm tired and fatigue easily. You'd think I'd be used to this as it was a side effect of IVIG too, but this is different. I need to be really careful not to wipe myself out too much as I have no immune system and can basically catch anything that floats by me. I notice that my energy is lowest in the 2 days after treatment and best in the 2 days before my next dose. Treatment days are a battle between fatigue and steroids. I am buzzing with energy while aching with body fatigue. It is very disconcerting. I hate steroids.
I have other side effects that vary through the week: nausea, headaches, muscle aches, etc. These are mostly manageable with drugs but aren't particularly pleasant. I'm still getting the hang of it all and looking for patterns so I know what to expect.
I continue to experience problems with breathing. I had a lot of fluid removed from my lungs a few weeks ago but have not yet fully recovered. I'm not using my full lung capacity, so I get winded easily. I'm working on it by using a little gadget called a spirometer. It is improving, just more slowly than I would like. This and the fatigue are keeping me from singing in choir this fall, which makes me sad. Choir is the one 'normal' hobby I've managed to continue through all of this and I really look forward to getting back to it.
Overall I must say that chemo has been a boon to my quality of life. I never imagined that I would feel so much better so quickly. Indeed, I always imagined that chemo was a necessary evil that made things worse so they could eventually get better. My experience so far is that the good significantly outweighs the bad. It's been a long time since I have seen any improvements and I am really trying to make the most of every one of them. I hope things continue like this through the next cycle. I'll keep you posted.
Ciao for now.
I finished my first chemo 'cycle' this week and figured I'd share some thoughts on how it is going so far. There are many types of chemotherapy out there and many different dosing schedules. I'm doing a modified version of a regimen called CyborD, which was designed for multiple myeloma patients as a preparation for stem cell transplants. Apparently it is also very effective for POEMS patients. So what is CyborD? Well, it's a combination of two chemo drugs -- Cyclophosphamide (taken as pills) and Bortezomib (given as an injection), and a steroid -- Dexamethasone (also pills). I take all three once a week at the cancer centre. I also get weekly blood work and a check-in with a Nurse Practitioner to make sure I'm on track. I will go through 4 cycles, each 4 weeks long, so 16 weeks total.
As far as chemo goes I think I'm getting off fairly lightly. For one thing, my hair is (at least so far) hanging on. For another, I don't need to spend hours hooked up to an IV. My side effects are also really not that bad. I don't want anyone who has been through rough chemo to think that I don't appreciate how lucky I have been so far. I'll get the real deal when I go for the stem cell transplant though, so I'll enjoy the easier ride while I can.
What do I make of my first cycle? Let's start with the good. As the title of this post implies, I've lost Floyd, my fluid baby! I have lost so much weight (all fluid) that they had to adjust my dose this week. I'm no longer all topsy-turvey and bloated. This has improved my mobility significantly, although I kind of look like a plucked chicken and need to do some serious muscle toning. Now, you may think that this is a great weight-loss program but there are better ways to do it. I basically spent a year not eating and gaining weight, then started treatment and eating and lost it. I'm sure the scales will (literally) even out eventually. My weight has been a rollercoaster since all this began almost 5 years ago. I've learned to roll with it and keep an array of sizes in my closet. I may treat myself to some new skinny jeans though.
Possibly more importantly my blood work is improving. I was in pretty dire shape a few months ago with some troubling blood chemistry. I'm not going into specifics here as I hope the numbers will mean as little to you as they did to me a few months ago. However, after months and months of not being sure how to fix things, they are starting to turn around. I'm still anemic and am eating my weight in Tums every day to keep up my calcium, but things are much better. Counts are going up where they should and down where they should. So far my one good vein for blood work is even holding up (this is a miracle in itself)!
Another sign that things are working is that my cherry hemangiomas (red moles) are starting to fade and shrink. I've had these red moles for at least twenty years but they really started to spread and grow 6 years ago or so. They may, in fact, be my first POEMS symptom, though they are not uncommon on their own. Anyway, I noticed the other day that some have disappeared entirely, while others are smaller and faded in colour. I've also noticed that my hands and feet are less purple. These both relate to the 'S' of POEMS - skin changes.
Now it isn't all roses. Chemo, even a fairly light regimen, is still pretty hardcore. I have side effects. I'm tired and fatigue easily. You'd think I'd be used to this as it was a side effect of IVIG too, but this is different. I need to be really careful not to wipe myself out too much as I have no immune system and can basically catch anything that floats by me. I notice that my energy is lowest in the 2 days after treatment and best in the 2 days before my next dose. Treatment days are a battle between fatigue and steroids. I am buzzing with energy while aching with body fatigue. It is very disconcerting. I hate steroids.
I have other side effects that vary through the week: nausea, headaches, muscle aches, etc. These are mostly manageable with drugs but aren't particularly pleasant. I'm still getting the hang of it all and looking for patterns so I know what to expect.
I continue to experience problems with breathing. I had a lot of fluid removed from my lungs a few weeks ago but have not yet fully recovered. I'm not using my full lung capacity, so I get winded easily. I'm working on it by using a little gadget called a spirometer. It is improving, just more slowly than I would like. This and the fatigue are keeping me from singing in choir this fall, which makes me sad. Choir is the one 'normal' hobby I've managed to continue through all of this and I really look forward to getting back to it.
Overall I must say that chemo has been a boon to my quality of life. I never imagined that I would feel so much better so quickly. Indeed, I always imagined that chemo was a necessary evil that made things worse so they could eventually get better. My experience so far is that the good significantly outweighs the bad. It's been a long time since I have seen any improvements and I am really trying to make the most of every one of them. I hope things continue like this through the next cycle. I'll keep you posted.
Ciao for now.
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