Still alive and kicking. I know that when a cancer blog goes quiet for several months you start to wonder.
On the surface, largely ignoring the fact that I have cancer. Deep down, minorly freaking out.
PCR test in August came back at just over 3% IS, which is the lowest PCR that I've ever had. Same song and dance ensued. Doctor strongly encouraged proceeding to transplant, I dug in my heels and asked for more time. Since I am ultimately the decision maker; time reluctantly granted.
Regular oncologist is useful for writing prescriptions, obtaining prior authorizations, collecting copay amount, and deferring everything else to UCLA oncologist. Ordered a FISH test, instead of PCR for testing in October. FISH test not quite as useful to me, in terms of measuring response, since I've only ever had one other FISH test on peripheral blood, and several PCRs. Anyway, FISH results reported 20/100 cells positive for the Philadelphia Chromosome. So, 20% cancer. Most discouraging thing about it was the observation by the analyst: "Although this result suggests a change since the previous studies (2016), when 42-95% of cells showed a Ph, it is consistent with persistence/recurrence of the abnormal clone."
Simply put - three and a half years, and five different treatments later - cancer is still there. But, I mean really, putting it into perspective, WHAT ELSE IS NEW?
Next appointment with UCLA is looming on the horizon. I've had two minor infections this month alone. I haven't had any blood work since October. Totally ostriching, trying to enjoy the holidays, and swallowing my pills everyday.
And life goes on.
Tuesday, December 19, 2017
Friday, May 26, 2017
Dodging Bullets
My appointment extravaganza at UCLA did not start off well. Firstly, it took us almost five hours to get there. So I was over an hour late for my 7am appointment. I called as soon as I knew that we weren't going to make it (due to some accidents, and terrible monday morning traffic), but no one was in to answer the phones yet. So I called right at 7am, and spoke to someone nice that told me to just try to get there as quickly as I could, and they would squeeze me in. Whew.
So at about 8:15 we finally got in and parked, and I went to have my echocardiogram and the girl at the desk told me absolutely not. We were much too late, and they could not - contrary to what we had been told - fit me in; I was going to have to reschedule. Arg. So basically, I got up at 3am, had been on the road for 4+ hours for no reason at all. She was pretty unyielding, and it seemed like there was no way it was going to happen, so I walked away, and went on to complete my other scheduled tasks for the day.
Went down and had a chest x-ray - which took a total of less than ten minutes, from start to finish. Moved on and had labs drawn - the tech asked what I had done to make my doctor mad, as the order was for 9 vials, and one pee test.
Keith and I were starving, but I had an appointment scheduled with the social worker at 10am, so we didn't have time to jet off and find something to eat. The social worker is my favorite person so far that we've met at UCLA. Great sense of humor, great source for information - she gave us info on discounted housing, what to expect timeline-wise post transplant, and listened to our concerns. This appointment ended up going long, and we were with her for over an hour.
Next up was more labs (just 3 vials this time) to test BCR-ABL, and another superfluous CBC and metabolic panel, then Keith and I were finally able to go get something to eat before my scheduled 1:30 appointment with the Oncologist.
Turns out, going out to find something to eat in west LA at noon is a shit show. Every thing was super busy. We ended up at a filthy Chik fil a. The food tasted good - but again - we were starving, but the facilities were so dirty. They only gave us one napkin apiece, and it was just generally loud, unsanitary and disappointing.
The fun continued with an appointment with my Onc. She came in and told me that she was concerned about my ability to stay on Bosulif because of the rash that I got, and they she recommended that I proceed to transplant. They have identified three 10/10 matches for me, but she has not chosen the best candidate yet. Once transplant is decided upon, depending on the donor's schedule, I'm looking at a timeline of 4-6 weeks before the transplant takes place. Whoa. Just whoa. (I totally expected her to say 4-6 months, and I'm pretty sure that my face drained of all color when she told me this.) I suggested that since I had not had any further adverse reaction to Bosulif, that I would like to stay on the drug for 2-3 months to see if it could be effective for me. She agreed to call me when the test results came in for my BCR-ABL, but also expressed her doubts that Bosulif would have had any effect on my levels, considering I'd only been on it for a month (which included a 4 day drug break due to rash). I felt sick to my stomach, knowing that I was facing a summer in the hospital. I was so thankful that Keith was there with me so that he could ask questions, and hear first-hand what the doctor had to say. So much gets lost in translation when I'm trying to re-convey everything that was said.
The cherry on top to my already stellar day was a 4pm pulmonary function test, which crushed the last shred of hope that we had to get out of LA before rush "hour" traffic. The test was...interesting. A lot of breathing into a machine that measured my breaths, exhalation, and lung capacity. At one point the tech asked me if I had asthma - which I took to mean that I was failing the test, as I do not have asthma, as far as I know. (I've always had a little trouble catching my breath when exercising hard, but had attributed it to being overweight and out of shape.)
We left LA around 4:30pm and were able to stop for dinner,and make it home by 9pm, so I feel like we did really well traffic wise for the end of the day.
Digesting the news that I was looking at having a transplant in a month or two was incomprehensible, and we were both sad, quiet, and subdued for several days. Who was going to take care of our cats? How were we going to be able to afford it? What was I going to do about work? My health insurance? Who was going to take care of the rental house? Who could we get as an alternate care giver while I needed constant monitoring? Our heads were spinning, but we're both strong people, and even stronger together, so we knew that no matter what, we'd be alright.
Fast forward to Friday - four days later. I was online shopping for wigs (I think I'm going to need a wig if I lose all of my hair. I look like Axel Rose in hats/bandannas, and I'm not confident in the shape of my bare head) when my doctor called me. She had just gotten my BCR-ABL test results and I was down. Down to 5.6%. Which - lets face it - is incredible. When you consider that I was at 9% back in March, and I was only on Bosulif for one month, the test results are incredible. She suggested that if I wanted to wait 3 months and retest, she was amenable to that plan. Holy shit! The doctor that told me that she didn't believe that the med that I was on would have any effect just gave me a reprieve? A small miracle.
I hate to admit it, but I've got such mixed feelings about this result. On one hand, I'm overjoyed that I'm finally having a good response to TKI. On the other hand, historically, on other TKIs, I tend to respond for a number of months (usually 9 or so) and then my BCR-ABL climbs. So am I really just delaying the inevitable by waiting? Am I merely postponing a transplant, or have I dodged a bullet? Is this just a temporary reprieve so that we can get our shit together and get better prepared, or is it the result that I've been so fervently hoping for for the past three years?
Too soon to tell.
So at about 8:15 we finally got in and parked, and I went to have my echocardiogram and the girl at the desk told me absolutely not. We were much too late, and they could not - contrary to what we had been told - fit me in; I was going to have to reschedule. Arg. So basically, I got up at 3am, had been on the road for 4+ hours for no reason at all. She was pretty unyielding, and it seemed like there was no way it was going to happen, so I walked away, and went on to complete my other scheduled tasks for the day.
Went down and had a chest x-ray - which took a total of less than ten minutes, from start to finish. Moved on and had labs drawn - the tech asked what I had done to make my doctor mad, as the order was for 9 vials, and one pee test.
Keith and I were starving, but I had an appointment scheduled with the social worker at 10am, so we didn't have time to jet off and find something to eat. The social worker is my favorite person so far that we've met at UCLA. Great sense of humor, great source for information - she gave us info on discounted housing, what to expect timeline-wise post transplant, and listened to our concerns. This appointment ended up going long, and we were with her for over an hour.
Next up was more labs (just 3 vials this time) to test BCR-ABL, and another superfluous CBC and metabolic panel, then Keith and I were finally able to go get something to eat before my scheduled 1:30 appointment with the Oncologist.
Turns out, going out to find something to eat in west LA at noon is a shit show. Every thing was super busy. We ended up at a filthy Chik fil a. The food tasted good - but again - we were starving, but the facilities were so dirty. They only gave us one napkin apiece, and it was just generally loud, unsanitary and disappointing.
The fun continued with an appointment with my Onc. She came in and told me that she was concerned about my ability to stay on Bosulif because of the rash that I got, and they she recommended that I proceed to transplant. They have identified three 10/10 matches for me, but she has not chosen the best candidate yet. Once transplant is decided upon, depending on the donor's schedule, I'm looking at a timeline of 4-6 weeks before the transplant takes place. Whoa. Just whoa. (I totally expected her to say 4-6 months, and I'm pretty sure that my face drained of all color when she told me this.) I suggested that since I had not had any further adverse reaction to Bosulif, that I would like to stay on the drug for 2-3 months to see if it could be effective for me. She agreed to call me when the test results came in for my BCR-ABL, but also expressed her doubts that Bosulif would have had any effect on my levels, considering I'd only been on it for a month (which included a 4 day drug break due to rash). I felt sick to my stomach, knowing that I was facing a summer in the hospital. I was so thankful that Keith was there with me so that he could ask questions, and hear first-hand what the doctor had to say. So much gets lost in translation when I'm trying to re-convey everything that was said.
The cherry on top to my already stellar day was a 4pm pulmonary function test, which crushed the last shred of hope that we had to get out of LA before rush "hour" traffic. The test was...interesting. A lot of breathing into a machine that measured my breaths, exhalation, and lung capacity. At one point the tech asked me if I had asthma - which I took to mean that I was failing the test, as I do not have asthma, as far as I know. (I've always had a little trouble catching my breath when exercising hard, but had attributed it to being overweight and out of shape.)
We left LA around 4:30pm and were able to stop for dinner,and make it home by 9pm, so I feel like we did really well traffic wise for the end of the day.
Digesting the news that I was looking at having a transplant in a month or two was incomprehensible, and we were both sad, quiet, and subdued for several days. Who was going to take care of our cats? How were we going to be able to afford it? What was I going to do about work? My health insurance? Who was going to take care of the rental house? Who could we get as an alternate care giver while I needed constant monitoring? Our heads were spinning, but we're both strong people, and even stronger together, so we knew that no matter what, we'd be alright.
Fast forward to Friday - four days later. I was online shopping for wigs (I think I'm going to need a wig if I lose all of my hair. I look like Axel Rose in hats/bandannas, and I'm not confident in the shape of my bare head) when my doctor called me. She had just gotten my BCR-ABL test results and I was down. Down to 5.6%. Which - lets face it - is incredible. When you consider that I was at 9% back in March, and I was only on Bosulif for one month, the test results are incredible. She suggested that if I wanted to wait 3 months and retest, she was amenable to that plan. Holy shit! The doctor that told me that she didn't believe that the med that I was on would have any effect just gave me a reprieve? A small miracle.
I hate to admit it, but I've got such mixed feelings about this result. On one hand, I'm overjoyed that I'm finally having a good response to TKI. On the other hand, historically, on other TKIs, I tend to respond for a number of months (usually 9 or so) and then my BCR-ABL climbs. So am I really just delaying the inevitable by waiting? Am I merely postponing a transplant, or have I dodged a bullet? Is this just a temporary reprieve so that we can get our shit together and get better prepared, or is it the result that I've been so fervently hoping for for the past three years?
Too soon to tell.
Sunday, May 7, 2017
A Rocky Start
Well that didn't go well.
I finally got started on Bosutinib April 13th. The Dr. told me, but still, the nausea took me by surprise. I was so sick the first day i drank a whole liter of diet seven up and little else. It got some better, but I have to say that I experienced some level of stomach discomfort every day for the first ten days. Then, on the tenth day, I broke out in a full body rash. Hives everywhere except my face, feet and hands.
It happened on a weekend, so I kinda just sat around waiting for things to get better. Which they did not. So, Monday morning, I high-tailed it into my pcp who gave me a steroid shot, and a prescription for a prednisone taper. Finally got ahold of both of my oncologists. Regular onc told me to wait for the rash to clear completely, then wait a week, and restart Bosutinib. UCLA onc told me that this "reaction" was not a good sign that I would be able to tolerate Bosutinib for the long run, and told me not to be off of a TKI for more than a week. She has also accelerated my sct/bmt pre-testing, and I'll be squeezing a pulmonary function test, echo-cardiogram, meeting with a social worker, and other various blood tests in - along with my appointment with her on Monday May 15th. The steroids helped clear up the red patches, and within three days they were no longer raised and much less pronounced, so after a four day medication break I restarted the Bosutinib. No recurrence of the hives, and the stomach issues, while still present, appear to be less severe. So far.
It's been another ten days on medication, and the rash has not reappeared. My only fear is that I will not have made very much discernible progress at my May 15th appointment, as I will only have been able to be on Bosutinib for about a month. Beginning to face the reality that a stem cell transplant may be in my future. I've still got hope, but this little episode provided a healthy dose of reality.
I finally got started on Bosutinib April 13th. The Dr. told me, but still, the nausea took me by surprise. I was so sick the first day i drank a whole liter of diet seven up and little else. It got some better, but I have to say that I experienced some level of stomach discomfort every day for the first ten days. Then, on the tenth day, I broke out in a full body rash. Hives everywhere except my face, feet and hands.
 |
| They didn't itch. |
 |
| Hives everywhere. |
 |
| My arms were the worst. |
It happened on a weekend, so I kinda just sat around waiting for things to get better. Which they did not. So, Monday morning, I high-tailed it into my pcp who gave me a steroid shot, and a prescription for a prednisone taper. Finally got ahold of both of my oncologists. Regular onc told me to wait for the rash to clear completely, then wait a week, and restart Bosutinib. UCLA onc told me that this "reaction" was not a good sign that I would be able to tolerate Bosutinib for the long run, and told me not to be off of a TKI for more than a week. She has also accelerated my sct/bmt pre-testing, and I'll be squeezing a pulmonary function test, echo-cardiogram, meeting with a social worker, and other various blood tests in - along with my appointment with her on Monday May 15th. The steroids helped clear up the red patches, and within three days they were no longer raised and much less pronounced, so after a four day medication break I restarted the Bosutinib. No recurrence of the hives, and the stomach issues, while still present, appear to be less severe. So far.
It's been another ten days on medication, and the rash has not reappeared. My only fear is that I will not have made very much discernible progress at my May 15th appointment, as I will only have been able to be on Bosutinib for about a month. Beginning to face the reality that a stem cell transplant may be in my future. I've still got hope, but this little episode provided a healthy dose of reality.
Tuesday, April 4, 2017
Three Year Cancerversary
Its my cancerversary. Its not a day that I celebrate or want to re-live. 4/4/14. According to wikipedia:
Number 4 (四; accounting 肆; pinyin sì) is considered an unlucky number in Chinese because it is nearly homophonous to the word "death" or "decease" (死 pinyin sǐ).
Well isn't that a gem of information.
I will be commemorating the day with a visit to the dentist. Seems appropriate.
Number 4 (四; accounting 肆; pinyin sì) is considered an unlucky number in Chinese because it is nearly homophonous to the word "death" or "decease" (死 pinyin sǐ).
Well isn't that a gem of information.
I will be commemorating the day with a visit to the dentist. Seems appropriate.
Wednesday, March 22, 2017
Another One Bites the Dust
My UCLA oncologist made good on her promise, and actually called me back with my test results last week. My BCR-ABL pcr went up (which is the wrong direction for it to go) from 5% when I was there in November to 8% on March 2, 2017. She suggested that we proceed to transplant.
Which is easy for her to say since by "we" she meant me. I was a little bit dumbstruck as I felt that we had just discussed the plan of action, which was to switch to Bosutinib if my BCR-ABL came back higher. I reminded her of the plan. She again expressed that she felt that if Ponatinib did not work for me, that she was very skeptical that Bosutinib would be beneficial. I straight up told her that I am not ready to "proceed to transplant". My life is relatively normal, despite my cancer not being at "safe" levels. I can't reconcile myself to undergoing a stem cell transplant until I have exhausted my available options. Bosutinib is currently my last FDA approved TKI option, and I intend to give it my best shot. That said, I know, and fully understand that having a transplant is now more of a probability for me.
So why am I all bent out of shape about having a SCT when it could essentially cure me? A transplant is not a decision that can be made lightly. Besides a high mortality rate, there are a whole host of other complications that could arise. From graft failure, organ failure, infertility, secondary cancers, all the way to death. (Lookie here.) It's hard for me to imagine going from my normal life, to locked down in a hospital for potentially 30+ days, and recovering from the most invasive medical procedure there is. A realistic recovery time for a stem cell transplant is at minimum 6 months to about a year. A FREAKING YEAR. Some complications can last a lifetime. So maybe you all can understand why I'm more than a little reluctant to jump right in when there is still a possibility (however remote it may be) that I could respond to drug therapy.
Hopefully next week, I should be trading in Ponatinib for Bosutinib. And hopefully Bosutinib will beat my cancer into submission. Or remission. That would be great too.
Friday, March 3, 2017
Hold your Horses
Where to start? Honestly, I've been doing my damnedest to ignore my leukemia lately. Continuing to take my daily pills, and have monthly lab work, but otherwise neglecting all things cancer related. UCLA has a way of pulling me out of my little fantasy though, every time.
A couple of weeks ago, I received a call from my transplant coordinator. (Oh, yeah, in case I didn't mention it, I apparently have a "transplant coordinator".) She called to let me know that despite my sister not being my HLA match, that she had done a preliminary search in the world-wide registry, and it looked to her that I had AT LEAST ten potential matches. This call elicited both relief and panic at the same time. Relief knowing that if I do need a transplant, I will most likely have a good match. Panic at the thought that I might need a transplant. After she told me the good news about potential matches, she continued to let me know that she was working with my insurance company to get my pre-transplant testing lined up, as my doctor was prepared to proceed with the BMT/SCT. Uh, what? 'Scuse me? Shouldn't I have been the first one to know that? So I voiced my concerns, and told her that I was in no way prepared to "continue to transplant" at this point. Unaware that my doctor had not discussed this with me, she set me up with an appointment to talk with my doctor, so that we could get on the same page.
I have been metaphorically digging in my heels ever since.
So I went in with a game plan. I wasn't going to be pushed into anything, especially something that would most certainly change my life, and even had the potential to end it. I wasn't sure what my last blood work had shown. I had tried to call for results, and left several voicemails on for several different people, but they seemed to disappear into the ether, as I never heard back from anyone at all. So I told myself, "Self, if it was bad, like bad, bad - they would call you. Take the fact that they are not calling you as a good sign." And I let it go. Which is so unusual for me, but I've had a lot of other things going on, so it was a bit of a relief to let cancer fade into the background for awhile.
I met with my doctor yesterday.
And it wasn't bad. My PCR according to her, when I was tested back in November was at 5%IS at the UCLA lab. (Slightly concerning - my PCR was 7%IS in January at my regular lab, so if accurate that is a step on the wrong direction.) I went in ready to defend by position, but I didn't have to.
I told her straight that I didn't want to proceed to transplant until it was my last option, and I felt that if my current dosage of Ponatinib was not enough to keep my leukemia under control - which it has never been, by the way, under control that is, according to the National Cancer Network guidelines - I would like to either go to a higher dosage of my current medication, or switch to the last FDA approved drug available to treat CML - Bosutinib. We agreed on a course of action. If the blood work that I had done yesterday (which won't be back for a week or so) shows that my PCR percentage is under 1% we will continue as usual and put all transplant planning on hold. If my PCR is still over 1% after 7 months on 30mg Ponatinib, we will switch to high dosage (500mg) Bosutinib, and test at 3 and 6 month intervals, while simultaneously continuing the preliminary preparations for transplant. She let me know that she believed that if Pontanib didn't work, that she felt that it was unlikely that Bosutinib would work any better, but as long as my cancer does not show any signs of progression, she was willing to let me give it a try.
So that's where I am right now. I am running out of viable drug options. Next week, a single blood test will decide my fate. If they ever call me and let me know the results, that is.
A couple of weeks ago, I received a call from my transplant coordinator. (Oh, yeah, in case I didn't mention it, I apparently have a "transplant coordinator".) She called to let me know that despite my sister not being my HLA match, that she had done a preliminary search in the world-wide registry, and it looked to her that I had AT LEAST ten potential matches. This call elicited both relief and panic at the same time. Relief knowing that if I do need a transplant, I will most likely have a good match. Panic at the thought that I might need a transplant. After she told me the good news about potential matches, she continued to let me know that she was working with my insurance company to get my pre-transplant testing lined up, as my doctor was prepared to proceed with the BMT/SCT. Uh, what? 'Scuse me? Shouldn't I have been the first one to know that? So I voiced my concerns, and told her that I was in no way prepared to "continue to transplant" at this point. Unaware that my doctor had not discussed this with me, she set me up with an appointment to talk with my doctor, so that we could get on the same page.
I have been metaphorically digging in my heels ever since.
So I went in with a game plan. I wasn't going to be pushed into anything, especially something that would most certainly change my life, and even had the potential to end it. I wasn't sure what my last blood work had shown. I had tried to call for results, and left several voicemails on for several different people, but they seemed to disappear into the ether, as I never heard back from anyone at all. So I told myself, "Self, if it was bad, like bad, bad - they would call you. Take the fact that they are not calling you as a good sign." And I let it go. Which is so unusual for me, but I've had a lot of other things going on, so it was a bit of a relief to let cancer fade into the background for awhile.
I met with my doctor yesterday.
And it wasn't bad. My PCR according to her, when I was tested back in November was at 5%IS at the UCLA lab. (Slightly concerning - my PCR was 7%IS in January at my regular lab, so if accurate that is a step on the wrong direction.) I went in ready to defend by position, but I didn't have to.
I told her straight that I didn't want to proceed to transplant until it was my last option, and I felt that if my current dosage of Ponatinib was not enough to keep my leukemia under control - which it has never been, by the way, under control that is, according to the National Cancer Network guidelines - I would like to either go to a higher dosage of my current medication, or switch to the last FDA approved drug available to treat CML - Bosutinib. We agreed on a course of action. If the blood work that I had done yesterday (which won't be back for a week or so) shows that my PCR percentage is under 1% we will continue as usual and put all transplant planning on hold. If my PCR is still over 1% after 7 months on 30mg Ponatinib, we will switch to high dosage (500mg) Bosutinib, and test at 3 and 6 month intervals, while simultaneously continuing the preliminary preparations for transplant. She let me know that she believed that if Pontanib didn't work, that she felt that it was unlikely that Bosutinib would work any better, but as long as my cancer does not show any signs of progression, she was willing to let me give it a try.
So that's where I am right now. I am running out of viable drug options. Next week, a single blood test will decide my fate. If they ever call me and let me know the results, that is.
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