Blood Counts:
HBG:15.5
PLT: 260
WBC: 7.46
ANC: 4.26
Hemoglobin was a little bit high during my last round of tests. They said that it could be from dehydration, but that it bears watching, and that they will keep an eye on it.
Being on steroids is so hard. On the one hand, I believe that they do have a positive impact on my joint issues. They don't eliminate the pain, but I feel like they might help alleviate the inflammation a tiny bit. (I was also prescribed a topical ibuprofen gel...it does absolutely nothing.) I was put back on 40mg of prednisone daily at my last appointment, and have tapered down to 25mg. Don't get me wrong, my fingers are still stiff and sore, and the joints in my toes, feet, and ankles can't tolerate much activity without pain, but I feel like the steroids are keeping it from getting much worse, as I haven't had very much progression into my other joints, like elbows shoulders or knees yet. So far the pain and stiffness is keeping to the periphery, so that's better than nothing.
Downsides are that, once again, I can't sleep at night. I spend hours lying awake, alternately staring at the wall, or the inside of my eyelids, just hoping that I can get more than 4 hours or so. My face is starting to fill out and look a little jowly and round again (which I hate), and I've gained back one of the lbs that I had worked so hard to lose. Just trying to remember that they are hopefully just temporary, as my Drs have decided to try to see if Jafiki (ruxolitinib) can help with my joint issues. I should be starting it in the next couple of days, and I'm hoping that it helps with my chronic GVHD. If it does, then we can discuss tapering off the prednisone again.
And by the way, how bummed am I to have developed chronic GVHD when I had literally no signs of acute GVHD in my first hundred days post transplant? I thought I was home free. While I'm thankful that the manifestations of GVHD have not been severe, I'm also concerned about progression, as my symptoms literally came out of nowhere, and are not completely alleviated by steroids.
Adding to my medical anxieties, I learned at my last appointment that the nurse practitioner that I have been seeing since I was released from the hospital is leaving UCLA. On top of that, my doctor just went on maternity leave, and won't be back until May. So I'm feeling a little bit abandoned. I have no doubt that my new NP, and my interim Dr will be more than capable, it's just a bit difficult having to form new relationships, and explain all the nuances of my medical history to new people.
Wednesday, February 27, 2019
Monday, February 11, 2019
Day +151 Expectations
My blood counts continue to look good, but the joints in my hands and feet continue to ache. I have been back on 10mg of prednisone (steroids) for almost three weeks now. They do seem to help some, but they don't eliminate the pain and stiffness. They've done blood tests checking for arthritis and inflammation, as well as some for graft vs. host disease, but nothing has come back red flagged...meaning nothing is off the charts high. So they don't really know why. All I know is that door handles are difficult, I struggle to open jars and bottles, and tasks like typing...remaking the bed...grasping anything heavy or awkwardly shaped are all very painful, and difficult. My dr. mentioned perhaps switching me off steroids and onto a medication called Jakafi, as it has been known to help with GVHD, but if my blood tests don't support that diagnosis, I'm not sure if I'll be able to get insurance approval.
So I'm not sure what the game plan is at this point. The steroids make me hungry, occasionally sleepless, and give me a dull headache (not to mention long term steroid use has major negative impacts on bone health and can cause bone degeneration and osteoporosis.) I've tried Ibuprofen, as well as a very expensive ibuprofen gel, at the urging of one of my doctors to help with the joint pain. Neither have helped. All I know is that my joints ache like they never have before in my life - and it's not the weather (or my age...I would hope, at 38).
In recent testing, my vitamin D level also came back very low. They are having me take 50000 IU of vitamin D weekly for 12 weeks to try to bring it up to an acceptable level. The doctor said that low vitamin D could play a role in my fatigue, and that it may get better as my level increases. I've taken 3 doses so far, and I'm not running any marathons, so we'll see if it gets any better. I had an appointment scheduled with an endocrinologist to check that my adrenal glands are functioning correctly, but had to cancel when I went back on prednisone, as the testing cannot be done accurately while on steroids.
Good news is that my BCR-ABL test came back (this is the test that I've been having ever since i was diagnosed that tests the "cancer level" for CML). Before I went to transplant, my number had inched back up over 5%. My recent BCR-ABL was negative. Meaning no cancer. No leukemia. For the first time in almost 5 years, I can say that I don't have cancer. At all. Most CML patients in this day and age never get to say that, so in that respect I feel very fortunate.
As much as I hate to say it, I have to admit that I feel like a horrible and ungrateful person most of the time, because to be honest, I felt physically better before my transplant. I felt physically better with low levels of cancer, than I do now almost 5 months post transplant. There it is. No caveat to add to that, no "well at least..." I'm happy that I don't have cancer any more, but I'm sad about the things that treatment has cost me.
I've been trying to lose some of the weight that I seem to have acquired. (No one ever tells you that's going to happen. They tell you about the chemo nausea and weight loss, but they never tell you about the medication weight gain.) It's coming off twice as slowly as it went on. I purposely gained 15 lbs before I went into the hospital, thinking that it would help me once chemo killed my appetite. That never really happened for me, and with three months on high dose steroids, I gained another 15 lbs. In the past 6 weeks, I've managed to ditch 7.5 lbs, but it's been a struggle, especially since I'm on steroids again, and they make my stomach think my throat's been cut (aka I'm always hungry), and exercising a lot has been difficult since my ankles and toes start killing me after about half an hour on my feet. Struggling, but trying hard.
Hair is also coming in a bit more. Every week I can see a little less scalp, so that is a good thing. Very soft, and kind of dappled in color. I've heard that it often comes in curly - like Richard Simmons curly - after chemo treatment. So far, laying pretty flat in most spots, so I hope to dodge that bullet.
Still traveling to UCLA every two weeks. Sometimes (especially when the weather or traffic is horrible) it feels like a waste of time, since my doctors don't really know what to do about my recent joint issues, and according to them, compared to other transplant patients, I am doing "so, so well". I don't want to be compared to other patients, though. I want to be better than *I* was before. Maybe I have unrealistic expectations.
So I'm not sure what the game plan is at this point. The steroids make me hungry, occasionally sleepless, and give me a dull headache (not to mention long term steroid use has major negative impacts on bone health and can cause bone degeneration and osteoporosis.) I've tried Ibuprofen, as well as a very expensive ibuprofen gel, at the urging of one of my doctors to help with the joint pain. Neither have helped. All I know is that my joints ache like they never have before in my life - and it's not the weather (or my age...I would hope, at 38).
In recent testing, my vitamin D level also came back very low. They are having me take 50000 IU of vitamin D weekly for 12 weeks to try to bring it up to an acceptable level. The doctor said that low vitamin D could play a role in my fatigue, and that it may get better as my level increases. I've taken 3 doses so far, and I'm not running any marathons, so we'll see if it gets any better. I had an appointment scheduled with an endocrinologist to check that my adrenal glands are functioning correctly, but had to cancel when I went back on prednisone, as the testing cannot be done accurately while on steroids.
Good news is that my BCR-ABL test came back (this is the test that I've been having ever since i was diagnosed that tests the "cancer level" for CML). Before I went to transplant, my number had inched back up over 5%. My recent BCR-ABL was negative. Meaning no cancer. No leukemia. For the first time in almost 5 years, I can say that I don't have cancer. At all. Most CML patients in this day and age never get to say that, so in that respect I feel very fortunate.
As much as I hate to say it, I have to admit that I feel like a horrible and ungrateful person most of the time, because to be honest, I felt physically better before my transplant. I felt physically better with low levels of cancer, than I do now almost 5 months post transplant. There it is. No caveat to add to that, no "well at least..." I'm happy that I don't have cancer any more, but I'm sad about the things that treatment has cost me.
I've been trying to lose some of the weight that I seem to have acquired. (No one ever tells you that's going to happen. They tell you about the chemo nausea and weight loss, but they never tell you about the medication weight gain.) It's coming off twice as slowly as it went on. I purposely gained 15 lbs before I went into the hospital, thinking that it would help me once chemo killed my appetite. That never really happened for me, and with three months on high dose steroids, I gained another 15 lbs. In the past 6 weeks, I've managed to ditch 7.5 lbs, but it's been a struggle, especially since I'm on steroids again, and they make my stomach think my throat's been cut (aka I'm always hungry), and exercising a lot has been difficult since my ankles and toes start killing me after about half an hour on my feet. Struggling, but trying hard.
Hair is also coming in a bit more. Every week I can see a little less scalp, so that is a good thing. Very soft, and kind of dappled in color. I've heard that it often comes in curly - like Richard Simmons curly - after chemo treatment. So far, laying pretty flat in most spots, so I hope to dodge that bullet.
 |
| Almost real hair |
Still traveling to UCLA every two weeks. Sometimes (especially when the weather or traffic is horrible) it feels like a waste of time, since my doctors don't really know what to do about my recent joint issues, and according to them, compared to other transplant patients, I am doing "so, so well". I don't want to be compared to other patients, though. I want to be better than *I* was before. Maybe I have unrealistic expectations.
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