I have so many people asking a lot of the same questions. So I just want to give you guys my story...
I was diagnosed with CML on 8/22/18. (Over a year ago)
I was first given hydroxera to help quickly reduce my 364,000 wbc count along with reducing my spleen size. I was very very sick when I was first diagnosed. I didn’t know I was sick or what I had until an emergency room visit reveal I had leukemia.
My first BMB and meeting with a hematologist confirmed it was CML.
I was hospitalized and given chemo. I had a few different leukocytapheresis treatments. I was given steroids, pain medications, and a lot of other things. The first time I was hospitalized was kind of a blur.
I got out of the hospital and got sick again. My platelets had dropped so low along with all my other counts I had to stop all medications and get back into the hospital. I had tons of platelet and blood transfusions. The hydroxera had knocked down all my healthy cells leaving me with no immune system and inability to be on any chemo.
I was released from the hospital once my counts came up and stayed at a normalish number. I was finally able to start gleevec. I was on gleevec 400 and that was to toxic for me. Again I repeated my blood counts failing. I had to stop the tki. Now my bcrabl had responded and it was reacting positively to the tki but I couldn’t take it with out it knocking everything else down. So they lowered gleevec and I got to start 100 once all my numbers came back up. But even on 100 it still knocked my numbers to the ground.
Now that I had stopped and started 2x my bcrabl had gone back up.
We switched to sprycel. Repeat. Knocked my blood counts down had to stop.
In the process of all of this since I started over a year ago I have had WEEKLY (if not more) blood draws. 4 bone marrow biopsies.
I have been on and off tasigna for 3x now. It was working to the extent of knocking my bcrabl down but it was also knocking my platelets and blood counts down. Now, the tasigna is not making enough progress in knocking the bcrabl down and my platelets are starting to go down again as well. I am also currently on a medication to help my bone marrow produce healthy cells and it’s not wanting to work. This is buying my time until the transplant. It’s not a long term option. This is only temporary to get me to the next step.
I have been to Mayo Clinic. I’ve seen my original doctor since day 1. My doctor has sent my case to several other doctors including Dr Druker. They have all come to this conclusion. A transplant is my best option to be able to come out on the other side of this and live a somewhat normal life. It’s been over a year and the only thing we have managed to do is get my spleen size under control.
The cancer is now getting more aggressive and it is important to do the transplant before I go into accelerated or blast phase. It’s not unheard of for someone to respond the way I am. But it’s rare. Extremely rare to have all the adverse effects that I have had. And my body can’t keep up with the hell its been through.
I just got married 2 months before I was diagnosed. I have an almost 10 year old daughter. I am 28 years old. I want my life back. I might die trying to get it back but Atleast I’m giving it my ALL.
I don’t have any other choice.