Results are in from HLA matching. My sister is not a match.
Cause that's how I roll, apparently. The path of MOST resistance. EVERY. SINGLE. TIME.
You know how people say that God doesn't give anyone more than they can handle? Well, God has a very high opinion of me, apparently.
New appointment with UCLA in a couple of weeks. We'll see what our next move is.
Stay tuned...
Friday, November 4, 2016
Wednesday, October 12, 2016
Testing...1...2...3...
Some days I ask myself, "Is this really my life?" How many people have to drive an hour to have labs run every ten days? How many people have to ask their family members for blood? (To get HLA typed?) How many 36 year old's have to juggle "old man cancer" on top of a full time job, building a house, and planning to get married? How many people with CML fail to respond to the miracle drugs that keep the cancer at bay for so many?
Oh, just me? Ok, then.
I guess this IS my life.
HLA test kits came in the mail last week. So weird. HLA stands for Human Leukocyte Antigen - which is a test that identifies the unique properties of a persons immune system. To put it simply - it's actually much more complicated - but essentially, HLAs differentiate "self" and "non-self" cells. The cells that are identified as belonging to an individuals particular body are left alone to do their own thing; the cells it sees as foreign are attacked and destroyed. HLA testing is used to determine compatibility for a Stem Cell or Bone Marrow transplant. The goal is to find a donor with cells that match your specific HLA antigens most closely, so that the body does not recognize them as foreign and try to attack them. During a SCT/BMT (stem cell transplant/bone marrow transplant) the recipients blood making cells are destroyed through chemotherapy and/or radiation (they keep on making cancer cells instead of healthy cells, so they're not doing their job right, anyway) and then the recipient receives cells from a donor that will hopefully grow and build a new cancer free blood making system. Easy peasy, right? Not so much. They pretty much have to kill off the recipients blood making system, rendering the body essentially defenseless to any kind of infection, until the donors cells start to grow and multiply, and start to provide some protection.
So why does any of this matter to me?
The first Ponatinib results are in, and they are not as good as I had hoped. If you'll remember, every couple of months I get tested for the amount of cancer that is still present in my cells. I've referred to it as a BCR-ABL PCR test. On Tasigna 800mg I'd reached an all time low of 4.003%. I was hoping that Ponatinib would push it down even further, but alas, my measurement on 9/23/16 was 9.487%. So, going the wrong way again. (Ponatinib is supposed to be the major bad-ass of all TKI's too, so I just don't get it.) The majority of people with CML respond well to TKI drug therapy, but I've never tested below 4% to date.
So, in light of recent testing, it's one step closer to the SCT/BMT back up plan for me.
My sister is amazing, for those of you who don't know this. I called her up Monday morning, made small talk about her children's parent teacher conferences, told her I had a bottle of apple wine for her, and casually slipped into the conversation that I needed a couple of vials of her blood, if she could spare it. And like a lightening bolt, she made it happen.
I, myself, have been in "avoidance mode". UCLA called me a month ago, and I refused to listen to the voicemail for three weeks. I finally decided to be an adult about it, listened to the message that prompted me to schedule my blood testing, wrote the contact number down on a piece of paper, and promptly shoved it in the bottom of my purse. Well, turns out that the transplant coordinator is better at her job than I am at being a responsible adult, and she called me again last week. (To my credit, I did answer the call, so I feel like I should get some kind of consideration for that.) She had blood testing kits out to me within two days. Now, my plan was to let them sit in my cupboard for a week or so, you know, just to adjust to the altitude up here (that's not a thing, I made it up) and give me a little time to stew about it, but Lacey wasn't having it. (When a person needs a SCT/BMT they first test all willing siblings. There is a 25% chance that a sibling with the same mother and father will be a match.) Time elapsed from when Lacey first learned about the testing, to the time they were being couriered to UCLA, was a total of about 2 hours. Thank you to my little sister for being the grown up.
Now that the tests are in, I fully expect to hear from no one for the next month or so. I'm not an urgent case, so it's very likely that no further steps will be taken unless something in my blood work goes considerably wonky in the not too distant future.
Which is not my plan.
I'm done with wonky. I'm done with special. Had enough of unique. I'd like to place an order for boring and predictable, please. C'mon body, a little cooperation would be nice this time.
Oh, just me? Ok, then.
I guess this IS my life.
HLA test kits came in the mail last week. So weird. HLA stands for Human Leukocyte Antigen - which is a test that identifies the unique properties of a persons immune system. To put it simply - it's actually much more complicated - but essentially, HLAs differentiate "self" and "non-self" cells. The cells that are identified as belonging to an individuals particular body are left alone to do their own thing; the cells it sees as foreign are attacked and destroyed. HLA testing is used to determine compatibility for a Stem Cell or Bone Marrow transplant. The goal is to find a donor with cells that match your specific HLA antigens most closely, so that the body does not recognize them as foreign and try to attack them. During a SCT/BMT (stem cell transplant/bone marrow transplant) the recipients blood making cells are destroyed through chemotherapy and/or radiation (they keep on making cancer cells instead of healthy cells, so they're not doing their job right, anyway) and then the recipient receives cells from a donor that will hopefully grow and build a new cancer free blood making system. Easy peasy, right? Not so much. They pretty much have to kill off the recipients blood making system, rendering the body essentially defenseless to any kind of infection, until the donors cells start to grow and multiply, and start to provide some protection.
So why does any of this matter to me?
The first Ponatinib results are in, and they are not as good as I had hoped. If you'll remember, every couple of months I get tested for the amount of cancer that is still present in my cells. I've referred to it as a BCR-ABL PCR test. On Tasigna 800mg I'd reached an all time low of 4.003%. I was hoping that Ponatinib would push it down even further, but alas, my measurement on 9/23/16 was 9.487%. So, going the wrong way again. (Ponatinib is supposed to be the major bad-ass of all TKI's too, so I just don't get it.) The majority of people with CML respond well to TKI drug therapy, but I've never tested below 4% to date.
 |
| BCR-ABL PCR |
So, in light of recent testing, it's one step closer to the SCT/BMT back up plan for me.
My sister is amazing, for those of you who don't know this. I called her up Monday morning, made small talk about her children's parent teacher conferences, told her I had a bottle of apple wine for her, and casually slipped into the conversation that I needed a couple of vials of her blood, if she could spare it. And like a lightening bolt, she made it happen.
I, myself, have been in "avoidance mode". UCLA called me a month ago, and I refused to listen to the voicemail for three weeks. I finally decided to be an adult about it, listened to the message that prompted me to schedule my blood testing, wrote the contact number down on a piece of paper, and promptly shoved it in the bottom of my purse. Well, turns out that the transplant coordinator is better at her job than I am at being a responsible adult, and she called me again last week. (To my credit, I did answer the call, so I feel like I should get some kind of consideration for that.) She had blood testing kits out to me within two days. Now, my plan was to let them sit in my cupboard for a week or so, you know, just to adjust to the altitude up here (that's not a thing, I made it up) and give me a little time to stew about it, but Lacey wasn't having it. (When a person needs a SCT/BMT they first test all willing siblings. There is a 25% chance that a sibling with the same mother and father will be a match.) Time elapsed from when Lacey first learned about the testing, to the time they were being couriered to UCLA, was a total of about 2 hours. Thank you to my little sister for being the grown up.
Now that the tests are in, I fully expect to hear from no one for the next month or so. I'm not an urgent case, so it's very likely that no further steps will be taken unless something in my blood work goes considerably wonky in the not too distant future.
Which is not my plan.
I'm done with wonky. I'm done with special. Had enough of unique. I'd like to place an order for boring and predictable, please. C'mon body, a little cooperation would be nice this time.
Friday, September 16, 2016
A Whisper
Well, I started Iclusig (Ponatinib). The warnings and cautions seem to escalate with each new drug I take. This one is the scariest of all, by far. Not scarier than untreated leukemia, though. I read through the package insert provided with my meds. Lots of not good things, and dire warnings. Then I folded the info sheet back up, threw it in the trash, and swallowed my first two pills. I've been swallowing them for a little over five weeks now. So far a few oddities...dry peeling skin on my face (weird), middle toe numbness for several days, freezing bum (don't know if it's related, but it's persistent - may just be the season changing), some bone pain. None of the big scary's though, so I'm doing good.
Did you hear that? I said I'm doing good. I whispered it, actually. I'm afraid to shout it from the rooftops yet, but so far, according to the blood work that I've had done (just regular monitoring, no cancer testing yet) many of my blood counts seem to be improving. Hemoglobin - up. No recent transfusions for me. White blood cell count - up. Just finally breaking into the "normal" range. Platelets - sucky. But the same sucky that they have been for the past year and more. Two out of three? I'll take it.
No news yet on if Ponatinib is working to reduce the leukemia cells. Testing in a couple of weeks, so time will tell, I guess. I do guess, and hope and pray, and whisper. But I don't shout it out. Not yet. I'm not tempting fate.
Did you hear that? I said I'm doing good. I whispered it, actually. I'm afraid to shout it from the rooftops yet, but so far, according to the blood work that I've had done (just regular monitoring, no cancer testing yet) many of my blood counts seem to be improving. Hemoglobin - up. No recent transfusions for me. White blood cell count - up. Just finally breaking into the "normal" range. Platelets - sucky. But the same sucky that they have been for the past year and more. Two out of three? I'll take it.
No news yet on if Ponatinib is working to reduce the leukemia cells. Testing in a couple of weeks, so time will tell, I guess. I do guess, and hope and pray, and whisper. But I don't shout it out. Not yet. I'm not tempting fate.
Monday, July 18, 2016
Dude, You're a Bummer Man
Seriously. Can't I ever come to the table with any good news. Always doom and gloom. Well, get ready for it.
So, remember how I was saying that things have not progressing as well as they should? Still on that trend. I am currently still on Tasigna 800mg, but it doesn't seem to be having the desired effect on my cancer. The skin on my face is turning white...or maybe brown...I can't tell if the discoloration is too much pigment or not enough, it looks like my sunscreen application went seriously amiss...but the cancer reading (my BCR-ABL pcr) is still at over 8% as of the end of May. So I know that 8% sounds like I am doing better, like things are moving in the right direction, since I was at 14% at the beginning of the year, but the truth of the matter is that I need it to go down below .1%. This is the all important milestone that I am trying to reach - if/when I get there, it will mean that the cancer has very little chance of progressing. (Progressing? Huh? What does that mean? Well, if the cancer is not well controlled by the medication that I am on, there is a risk that it will progress into a more serious stage called Blast Crisis - which is very hard to treat, almost always requires full chemotherapy, and will almost always require a bone marrow or stem cell transplant - if the patient makes it that long.) So 8% - while it is less than 14% - is still miles away from where I need to be, especially since I've been on Tasigna for more than 7 months.
The one bright shining light throughout this has been that I haven't had to have a red blood cell transfusion since April 8th, 2016. My reds have been falling at a much slower pace, while the other counts (platelets, WBC) have stayed MY regular standard sucky, but somewhat stabilized. A transfusion MAY be in my future, however, as even though they have not been falling quite as fast, my counts have still been falling and I can feel that I'm getting low.
The PA that I have been shuffled off to in my new cancer clinic (oh yeah, that's right, they have handed me off to a PA to treat my refractory CML, that sounds like a brilliant decision, right?) has actually made a bit of a brilliant move, and sent in a referral for me to see a Dr. at UCLA. I've walked this road before. My original oncologist tried to get me in to see someone at UCLA, and the insurance company denied the request. Seems like second time was the charm, as I had UCLA calling me to schedule an appointment, before I'd even received the approval of the request in the mail. And, another shocker! they've already fit me into their schedule and I had my first office consultation.
Let me tell you how that went. UCLA thinks that I might need a bone marrow transplant. To which I replied, "Hmm. No thanks." Actually, what the Dr. I saw said was that I have had a suboptimal response to all of the medications that I have tried, thus far, and if one is not able to control the cancer level, and/or if my bone marrow does not start producing healthy cells, I MAY need a bone marrow transplant. She has suggested that my Dr.(PA) change my medication to Ponatinib (if you don't know about it, don't look it up, the warnings are scary AF), and that she would present my case to the transplant board for approval IN CASE the Ponatinib does not work, and I do, ultimately, need a bone marrow transplant. They are going to start the approval process with my insurance company, and get testing kits out to my sister and I for HLA typing. The smarties at UCLA are loading me up in the chute. But I'm digging in my heels.
IF Ponatinib doesn't do it for me, there is still one more currently approved medication to treat CML called Bosutinib. The Dr. at UCLA said that she doesn't like to prescribe it, as it has a tendency to cause "acute intestinal distress", but personally, if it becomes my last option before a BMT, I would much rather take my chances with some diarrhea than chemotherapy, radiation, possible transplant complications (like death), severe Graft vs. Host Disease, and on top of that, probably some acute intestinal distress caused by trying to - oh I don't know - KILL OFF all of my blood cells and replace them with new ones, that HOPEFULLY my body will not reject. That sounds like something that could cause some intestinal distress. Let's try to avoid that if at all possible.
So here's my plan: Ponatinib first, and hopefully that's the end of the story. Luckily, statistics that I've looked up regarding Ponatinib suggest that it is very good at treating refractory CML. (Hey, that's what I have!) Some studies have even suggested that as many as 65% of people with treatment resistant CML have benefited from Ponatinib. So, I'm going to go ahead be encouraged by those statistics, while cautiously preparing for a less than stellar outcome, and in the meantime try not to be such a bummer, man.
So, remember how I was saying that things have not progressing as well as they should? Still on that trend. I am currently still on Tasigna 800mg, but it doesn't seem to be having the desired effect on my cancer. The skin on my face is turning white...or maybe brown...I can't tell if the discoloration is too much pigment or not enough, it looks like my sunscreen application went seriously amiss...but the cancer reading (my BCR-ABL pcr) is still at over 8% as of the end of May. So I know that 8% sounds like I am doing better, like things are moving in the right direction, since I was at 14% at the beginning of the year, but the truth of the matter is that I need it to go down below .1%. This is the all important milestone that I am trying to reach - if/when I get there, it will mean that the cancer has very little chance of progressing. (Progressing? Huh? What does that mean? Well, if the cancer is not well controlled by the medication that I am on, there is a risk that it will progress into a more serious stage called Blast Crisis - which is very hard to treat, almost always requires full chemotherapy, and will almost always require a bone marrow or stem cell transplant - if the patient makes it that long.) So 8% - while it is less than 14% - is still miles away from where I need to be, especially since I've been on Tasigna for more than 7 months.
The one bright shining light throughout this has been that I haven't had to have a red blood cell transfusion since April 8th, 2016. My reds have been falling at a much slower pace, while the other counts (platelets, WBC) have stayed MY regular standard sucky, but somewhat stabilized. A transfusion MAY be in my future, however, as even though they have not been falling quite as fast, my counts have still been falling and I can feel that I'm getting low.
The PA that I have been shuffled off to in my new cancer clinic (oh yeah, that's right, they have handed me off to a PA to treat my refractory CML, that sounds like a brilliant decision, right?) has actually made a bit of a brilliant move, and sent in a referral for me to see a Dr. at UCLA. I've walked this road before. My original oncologist tried to get me in to see someone at UCLA, and the insurance company denied the request. Seems like second time was the charm, as I had UCLA calling me to schedule an appointment, before I'd even received the approval of the request in the mail. And, another shocker! they've already fit me into their schedule and I had my first office consultation.
Let me tell you how that went. UCLA thinks that I might need a bone marrow transplant. To which I replied, "Hmm. No thanks." Actually, what the Dr. I saw said was that I have had a suboptimal response to all of the medications that I have tried, thus far, and if one is not able to control the cancer level, and/or if my bone marrow does not start producing healthy cells, I MAY need a bone marrow transplant. She has suggested that my Dr.(PA) change my medication to Ponatinib (if you don't know about it, don't look it up, the warnings are scary AF), and that she would present my case to the transplant board for approval IN CASE the Ponatinib does not work, and I do, ultimately, need a bone marrow transplant. They are going to start the approval process with my insurance company, and get testing kits out to my sister and I for HLA typing. The smarties at UCLA are loading me up in the chute. But I'm digging in my heels.
IF Ponatinib doesn't do it for me, there is still one more currently approved medication to treat CML called Bosutinib. The Dr. at UCLA said that she doesn't like to prescribe it, as it has a tendency to cause "acute intestinal distress", but personally, if it becomes my last option before a BMT, I would much rather take my chances with some diarrhea than chemotherapy, radiation, possible transplant complications (like death), severe Graft vs. Host Disease, and on top of that, probably some acute intestinal distress caused by trying to - oh I don't know - KILL OFF all of my blood cells and replace them with new ones, that HOPEFULLY my body will not reject. That sounds like something that could cause some intestinal distress. Let's try to avoid that if at all possible.
So here's my plan: Ponatinib first, and hopefully that's the end of the story. Luckily, statistics that I've looked up regarding Ponatinib suggest that it is very good at treating refractory CML. (Hey, that's what I have!) Some studies have even suggested that as many as 65% of people with treatment resistant CML have benefited from Ponatinib. So, I'm going to go ahead be encouraged by those statistics, while cautiously preparing for a less than stellar outcome, and in the meantime try not to be such a bummer, man.
Monday, March 14, 2016
Happenings
"God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And wisdom to know the difference."
I'm not really a very religious person, but this has been my mantra for the past few months. (I'm not a recovering alcoholic, either.) Things have been going...not exactly poorly, but not nearly as well as one could have hoped. When I was first diagnosed with CML, I was told that I was lucky because I got the "good cancer". There is no such thing. Cancer sucks. It's a life sucking, soul sucking kind of suck, especially when you have the "good cancer". Having the "good cancer" essentially means that you are supposed to pretend that you don't have cancer, and go about your daily life. It's harder than one might think.
Ignoring my cancer has been made more difficult by the fact that I've had Dr appointments every two weeks for nearly the past year. My blood counts continue to be very low - and I've consistently had to have red blood cell transfusions approximately every six weeks. Sprycel stopped working for me in November of 2015, as my PCR (BCR-ABL) went from 8% to 18%, and I was switched to a new drug called Tasigna. I'm on the highest dosage recommended (800mg daily), and my Dr. had taken to calling my cancer "refractory". (I looked it up. It means: leukemia that does not respond to treatment. Lovely, thanks for that.) Speaking of Dr's, my medical group decided to "outsource" their oncology department, and I lost my Dr at the end of February. Luckily, his replacement turned out to be the Dr. that I saw for my second opinion, so he at least had a cursory understanding of my case. At our first appointment, he was a little shocked at how low my (blood count) numbers were, but with my platelets coming in at 47, I assured him that they were actually on the rise, as I had been hovering in the 30s for months now.
Besides my new oncologist, I also saw a "specialist" at Loma Linda in January of this year. It took an unbelievably long time to get an appointment, and for the first 15 minutes, he thought that I had AML due to a typo on his summary sheet. When he found out that I actually have CML - something that he would have known if he had, in fact, looked at any of my medical records that I had painstakingly collected and had sent over - he briefly reviewed my history, suggested that I move to a lower elevation, try not to have so many blood transfusions, get better health insurance, and have a bone marrow biopsy, then sent me on my way. Three months of waiting, for that? Really? He must not have got the memo about the "refractory" nature of my cancer.
However, my oncologist did take his advice, and scheduled me to have a bone marrow biopsy. I felt like I needed one, but by the time the day came, I was pretty much petrified. Some hospitals/Dr's will put you under anesthesia for the procedure, but the practice that I am affiliated with just uses a local - lidocane. If anyone is wondering, they lay you on your stomach, and numb you up with a couple of shots of lidocane. The needle is pushed into your illiac crest (which is low on your back, almost down to your behind, either to the right or left.) It takes quite a bit of pressure to get it through the bone. They then take a bone marrow aspiration, which means that they suck some of the fluid from inside the bone. This is the part that was the most uncomfortable. It felt like a white hot zap was flowing through me, and out. Like the jolt of a nerve. Unnerving. Next, they twist the needle around in order to take a core - a piece of the bone. They're looking for about a cm piece, and unfortunately, my first core was insufficient, so they had to go back in and take another. Then they bandage you up, lay you on your back to put pressure on the wound, and send you home. Quite honestly, the anticipation was the worst part of my first bone marrow biopsy, for me. I've had dental procedures that have been more painful.
Unfortunately, more bad news when the report finally came in. It stated that I have a "variant" of the Philadelphia Chromosome that is resistant to therapy. In CML, in most cases, a portion of chromosomes 9 and 22 break off and switch places. This creates what they refer to as the "Philadelphia Chromosome". Upon review, they found that in 85% of my cells, a small portion of chromosome 9 was lost during the switch - the deletion apparently means that the drugs that have been developed to treat CML thus far, don't work quite as well as they should for me. This was further supported by a test that they also do which looks at 20 cells to see how many still carry the Philadelphia translocation. Nineteen out of twenty were positive for leukemia. So that's frustrating. To have to endure low blood counts, and almost monthly transfusions, and STILL not be making much progress toward eradicating the leukemic cells is absolutely disheartening. Crushing. Devastating.
My Dr's have started slipping questions like "do you have any siblings"? "does your sister look like you"? "have you been HLA typed"? "has she"? into the conversation. (Yeah, they're none too sly.) I haven't. And I'm not going there yet. Maybe Tasigna is going to kick in, and start kicking leukemia butt. (I'm giving it another month.) If not, then maybe Bosutinib is the one for me. Or Pontinib. While there is a chance that the medications are not going to work well for me, there is also a chance that one of them WILL.
And so...for now: serenity, courage, and wisdom, please be with me.
The courage to change the things I can,
And wisdom to know the difference."
I'm not really a very religious person, but this has been my mantra for the past few months. (I'm not a recovering alcoholic, either.) Things have been going...not exactly poorly, but not nearly as well as one could have hoped. When I was first diagnosed with CML, I was told that I was lucky because I got the "good cancer". There is no such thing. Cancer sucks. It's a life sucking, soul sucking kind of suck, especially when you have the "good cancer". Having the "good cancer" essentially means that you are supposed to pretend that you don't have cancer, and go about your daily life. It's harder than one might think.
Ignoring my cancer has been made more difficult by the fact that I've had Dr appointments every two weeks for nearly the past year. My blood counts continue to be very low - and I've consistently had to have red blood cell transfusions approximately every six weeks. Sprycel stopped working for me in November of 2015, as my PCR (BCR-ABL) went from 8% to 18%, and I was switched to a new drug called Tasigna. I'm on the highest dosage recommended (800mg daily), and my Dr. had taken to calling my cancer "refractory". (I looked it up. It means: leukemia that does not respond to treatment. Lovely, thanks for that.) Speaking of Dr's, my medical group decided to "outsource" their oncology department, and I lost my Dr at the end of February. Luckily, his replacement turned out to be the Dr. that I saw for my second opinion, so he at least had a cursory understanding of my case. At our first appointment, he was a little shocked at how low my (blood count) numbers were, but with my platelets coming in at 47, I assured him that they were actually on the rise, as I had been hovering in the 30s for months now.
Besides my new oncologist, I also saw a "specialist" at Loma Linda in January of this year. It took an unbelievably long time to get an appointment, and for the first 15 minutes, he thought that I had AML due to a typo on his summary sheet. When he found out that I actually have CML - something that he would have known if he had, in fact, looked at any of my medical records that I had painstakingly collected and had sent over - he briefly reviewed my history, suggested that I move to a lower elevation, try not to have so many blood transfusions, get better health insurance, and have a bone marrow biopsy, then sent me on my way. Three months of waiting, for that? Really? He must not have got the memo about the "refractory" nature of my cancer.
However, my oncologist did take his advice, and scheduled me to have a bone marrow biopsy. I felt like I needed one, but by the time the day came, I was pretty much petrified. Some hospitals/Dr's will put you under anesthesia for the procedure, but the practice that I am affiliated with just uses a local - lidocane. If anyone is wondering, they lay you on your stomach, and numb you up with a couple of shots of lidocane. The needle is pushed into your illiac crest (which is low on your back, almost down to your behind, either to the right or left.) It takes quite a bit of pressure to get it through the bone. They then take a bone marrow aspiration, which means that they suck some of the fluid from inside the bone. This is the part that was the most uncomfortable. It felt like a white hot zap was flowing through me, and out. Like the jolt of a nerve. Unnerving. Next, they twist the needle around in order to take a core - a piece of the bone. They're looking for about a cm piece, and unfortunately, my first core was insufficient, so they had to go back in and take another. Then they bandage you up, lay you on your back to put pressure on the wound, and send you home. Quite honestly, the anticipation was the worst part of my first bone marrow biopsy, for me. I've had dental procedures that have been more painful.
Unfortunately, more bad news when the report finally came in. It stated that I have a "variant" of the Philadelphia Chromosome that is resistant to therapy. In CML, in most cases, a portion of chromosomes 9 and 22 break off and switch places. This creates what they refer to as the "Philadelphia Chromosome". Upon review, they found that in 85% of my cells, a small portion of chromosome 9 was lost during the switch - the deletion apparently means that the drugs that have been developed to treat CML thus far, don't work quite as well as they should for me. This was further supported by a test that they also do which looks at 20 cells to see how many still carry the Philadelphia translocation. Nineteen out of twenty were positive for leukemia. So that's frustrating. To have to endure low blood counts, and almost monthly transfusions, and STILL not be making much progress toward eradicating the leukemic cells is absolutely disheartening. Crushing. Devastating.
My Dr's have started slipping questions like "do you have any siblings"? "does your sister look like you"? "have you been HLA typed"? "has she"? into the conversation. (Yeah, they're none too sly.) I haven't. And I'm not going there yet. Maybe Tasigna is going to kick in, and start kicking leukemia butt. (I'm giving it another month.) If not, then maybe Bosutinib is the one for me. Or Pontinib. While there is a chance that the medications are not going to work well for me, there is also a chance that one of them WILL.
And so...for now: serenity, courage, and wisdom, please be with me.
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