Well, I kinda hijacked Pin's "Feeling Down" post and snuck in my recent PCR status. Thanks to everyone who was happy to hear the great news. Well, it appears my PCR came back as undetectable for bcr-abl. That means, PCRU. Crazy. I cannot believe I am writing this. I have to admit, it doesn't take away the fear of having CML. Now I will stress if the test detects anything. But it feels like a major milestone in my treatment.
Here is my history in a medium-sized nutshell.
- Never felt sick, no bruising, fatigue, etc., but a bump started growing under my ribcage, (that I couldn't suck in). It hurt a little when my kids crawled over me. Went to routine yearly check up and had 180,000 WBC count (my PLT were not that far above normal, so the CML I had did not show up 1st with significantly elevated PLT before the elevated WBC---I had had a CBC & EKG 8 months before diagnosis, (after giving birth), to get a discount on my life insurance premium, and all came out normal--so, the disease seemed to rear its ugly & detectible head rather quickly). And as far as ironies go, my husband has a greater amount upon his death than I. He felt I was in the best shape and I was younger...go figure.
- Put on hydroxyurea and Gleevec after a week in the hospital (kept up this regimen for a couple of weeks after discharge until I called and asked if I still had to keep taking the hydroxyurea, which made me feel like crap, and to which the onc.said, yes, of course, like I should have known to stop it on my own).
- My platelets took a quick and huge dive (I think I got lower than 20,000---but I showed no signs of bleeding internally, no bloody noses, my cuts healed normally and no bruising).
- My WBC and ANC, went down to dangerous levels (WBC 1.0 and ANC below .5). The onc said I should stay away from people, esp. crowds, eat no raw food, etc. Told it would be best to stay home by for holidays and events that had lots of people.
- Prescribed Neupogen (later Neulasta) shots (to raise WBC/ANC). Had to learn to give myself shots at home because the onc wanted me at "Cancers R Us" every other day for blood work & shots. (couldn't manage because of the baby and little toddler--far drive and very long waits if they didn't forget me in the waiting room as they sometimes did).
- Started to have extremely heavy menstruation. Was almost admitted to hospital for hemorrhaging (BTW, a drug change and birth control pills did the trick--progesterone was a flop).
- At 6 months, had to fire the onc who came with the famous, university hosptial/Cancer R Us center (she told me her plan for me was to stay with Gleevec, never change to another drug, and she would give me a stem cell transplant when I turned 50). I felt she had a poor understanding of CML and she was creeping me out to a point where I feared for my life under her care--she was a transplant Dr, and told me all the time I was doing badly (wasn't at 0) and would eventually need a BM transplant. She then started to pass me off to a PA---my opinion, cancer patients should never be abandoned solely to a PA unless it is years later and for maintenance purposes. Getting rid of the onc was very hard for me because I was told she was one of the best doctors for leukemia at this famous university cancer center (by another doctor).
- Shots did not increase the WBC or ANC much. Maybe once got ANC 1.0 on shots. My WBC was a little above 1.
- Found new and wonderful onc closer to home who didn't shout fire with everything that was happening, told me to go out and live my life, and celebrated the good things that happened. And had a wait and see attitude (but now set long term plans). She also let me bring the kids, (I had no one to watch them so frequently, but with this onc, she didn't demand that I have a CBC every other day--I looked like a drug addict with all the needle punctures on my arms and bruising from it--guess a lot of you can relate).
- Anemia got worse, started to have continuous menstruation where blood just poured out of me. My HGB fell to 5.
- I was set up for a transfusion (it takes time for typing--and since I have a somewhat rare blood type, it takes a little longer). Told the only risk was an allergic reaction to the preservatives or blood, and that was a 1 in a "gazillion" chance--as the onc's nurse put it).
- Went into anaphylactic shock with my first transfusion---just to say, I have not had a smooth ride on this CML trip. I had this allergic reaction as soon as the blood hit my veins and my throat started to close up. I wasn't really sure what was happening. I called to a nurse who walked by the infusion room and told her my throat felt funny. My blood pressure suddenly plummeted. Then, all of a sudden, the room was crowded with 9 people (I counted) and they shot me up with all these drugs---needless to say, the future blood transfusions left me feeling horrible (most people feel great). I had to wait for hours after to drive home because the extra drugs make you sleepy.
- Therefore, I had to start taking Aranesp to increase my red blood cells (which are extremely painful shots). I had to hold it together for my kids as they watched me get the shots, (at home, my son started poking me with sharp objects he would find in the garden, etc. ugggh!). Nevertheless, the kids enjoyed going, would make friends with all the elderly cancer patients, doctors, phlebotomists & nurses who spoiled them with them treats and juice--and as guilty as I felt bringing them to a cancer center (only when healthy, or course), they were well behaved--except for the one time my son brought his little trucks and drove them through the dirt in an indoor planter dumping it out all over the floor, and the time when they refused to move from their hideout under the leaky drinking fountains). However, I think they made a dreary place a little happier. Sadly, the CML had to be a family affair. Some people can hide it from their kids, but since I was nursing them and had to suddenly stop cold turkey and had no one to watch them, I had no choice. I think we are OK. Now that the kids are 3 1/2 years older, they seem relatively well adjusted.
- After reading more on this LLS board and with the FDA approval of Sprycel, I asked for a drug change. The onc agreed it couldn't hurt and mentioned Tasigna. I asked for Sprycel mostly because it is a once a day pill, thus easier to take and it was chemically dissimilar to Gleevec (which I was getting slow results with and what appeared to be tons of side effects---severe anemia, pancytopenia, yada, yada)
- After about a year, my blood counts came up. The shots ceased after a few months. I could take my kids to the park and not struggle for oxygen just crossing the room.
- My PCR continued to trend down with a few blips up, but then down again.
Still, I have yet to have normal blood counts. Some are close to normal, but they fluctuate a lot. And I don't know if my blood issues were solely due to the disease, the drug, or a combo. I am not sure if my blood counts went up due to Sprycel only, or just sticking with the a drug with no breaks despite my blood counts getting really low. In the first month after dx, I was hardly on Gleevec because my counts dropped so severely. By the 2nd month, my 1st onc emailed Dr Druker who told her not to give me any breaks any more. From that point on I had no breaks ever. I even switched from Gleevec to Sprycel with no break. It was brutal, but I survived. All the things that happened to me, the anemia, very low blood counts, etc. does not mean a patient with CML cannot have a CCyR, MMR, or even become PCRU. I am not really sure what normal blood counts mean on a TKI (but it is the gold standard, right?). But, normal blood counts are not necessary to achieve PCRU, clearly. All the issues I had do not seem to correlate with me having a poor response to the TKI (like the 1st onc predicted). I am sticking to, we still cannot predict the future. We will have to wait and see. For now, things are good. I have chronic mouth sores since starting Sprycel, but are the sores and low counts solely due to the drug? Who knows? End of story until I have to deal with the next thing, or not.
Hope this mini novel helps someone who is told high WBC at diagnosis, a huge spleen (and other organs---my liver was also huge), average to slow progress and low blood counts mean poor prognosis (or the drug is not working well). Again, there is no way to predict this right now. Only time will tell.
I was diagnosed Thanksgiving 2009, (3 1/2 years ago). I will continue to take my daily pill. I understand that my prognosis is still unknown. But, as it stands, I may stand a better chance of outliving the CML. For the first time, I can talk with much less reserve about seeing my kids grow up and retiring with my husband.
Cheers, love and good health to all my old BIFs and the new.
P.S. I in no way wanted to infer that drug breaks are bad. It is just another way to treat CML. AND Gleevec is an awesome drug (I couldn't wait to take my first pill--seriously!). As we are all different, we respond differently to different medications. The drug change for me was a shot in the dark. As it appears I have less side effects on Sprycel and needed a bit of a stronger drug.