Powered By
Kelly. Things get better for us but may I ask? Aren't you on another pill to? 🤔 They put me on 1 Sprycel 100mg/day, Hydroxyurea 4 pills a day to get the WBC=White blood cells count down to a safe level. The Hydroxyurea is a chemo this kicked my butt as if your on it this I bet could be the weight you losing etc. Also, the first 3 months are the hardest, especially the first month. Also when Oncologist put me on Hydroxyurea they put me on ALLOPURINOL for gout. The Hydroxyurea can cause gout, it's to prevent. I experienced Fatigue, Muscle/bone pain, limb numbness, headache few times, a migraine, flu symptoms with high temperature I had 104. First 2 weeks I had all this. The 2nd week I had the flue symptoms with high temp, & numbness then heart palpitations... this scared me as my left arm was numb when that happened, so I left work and went to urgent care immediately. They said no heart attack as vitals were normal. So then started getting brain fog. 🧠 short term memory loss.
Now I'm Fantastic on Bosutinib 400 mg. I had to switch as most those symptoms didn't go away and I had skin rashes with big bumps too leukemia bumps with the meds. Weird. But Bosutinib 400mg... first 10 days I had bad Diarrhea on this. But now I'm Fantastic been on it for 6 months and more now. My leukemia was at 78% 216.6 WBC count on 4-3-23 Diagnosis date. Now I'm at 0.034% Leukemia 5.4 WBC count. Just keep an eye & feel for symptoms and update your Oncologist with them. I'm wishing you the best and you can message me anytime. As there is also lls.org get a free care 📦 to learn about our condition. Also, lls.org call for grant help (Phone number can only be seen by the question and answer creators). Call maybe 1 time a month or so to check back in for grant help. As they can help and pay for your insurance premiums and medical costs.
I know seems very overwhelming but your not alone and we're all here for help. Also, Facebook has like 2-3 CML Leukemia groups to share symptoms with one another. It helps so much to talk to all of them and us here throughout our journey! Trust me. 🫂 Thanks, Your new friend, Ricky Las Vegas NV Painter at a hotel and casino
Thank you for your response, Team. Now I don't need to burden my oncologist with this question. I suspected my CML would evolve into the other phases but wasn't sure. I'm 84 and was diagnosed 5 years ago, went into remission briefly, but my numbers are drifting up again. I take Sprycel 70 mg. QD as a secondary drug to replace Gleevec. I guess it's a day-to-day situation then. I am concerned about splenomegaly and know the spleen is another organ that fights infection (I guess this means that the infectious agents stay in the spleen and don't get resolved/absolved with splenomegaly?) It's really depressing to know, and just as depressing to not know. No one wants to be in hospital for IV drugs just to continue on a no-win pathway. So it's stiff upper lip and a day to day situation. Maybe I'll die from something else entirely--You never know. 🤣 Thanks again.
Honestly I'm not sure. An Oncologist can maybe answer this for you. I've only been Diagnosed a year and 4 months. I'm told if you catch it very early you have more of a fighting chance to stay Negative but take the pill for life. There is a chance they can try and take you off the pill after 3 years of being Negative from CML for a lot it comes back. So this is why they don't like to say cure. Potentially can be.
@A MyLeukemiaTeam Member I'm kinda beating around the Bush here but... I don't wanna get you worried at all. What I mean is not everyone goes through the same symptoms but I do want to give you the heads up just in case you do you can message me. For any one of us obviously :). I also had some skin rashes from sprycel. I also have the lotion and the styroid clear cream that the dermatologist gave me it is a symptom of the leukemia/meds. The point is to tell you not to worry at all as there is Hundreds of thousands Ava's with the same condition and/or similar. There is lots of hope for most of us so we have to stay in that mentality because there is most definitely Hope. Keep that mindset in there like that and best I can tell your time with your hobbies on your downtime this way you're not constantly thinking the negative about it. And remember a great way to start is to get that care package I was talking about through lls.org have them send that to you. They even have webinars for us to log in to and they send you emails if you want to sign up for those emails and you can watch live scientist/doctors that specialize in this condition. Before the webinar you can sign up for it online and you can submit one major question you have an enter it in online before it happens. You have a great day and to all of us hope that we all get to that magical number 0 there is hope. Love all As we are in this together :).
@A MyLeukemiaTeam Member yes everything u just said I have heard the same thing! I only wear a mask at work due to the fact I work at a high school around kids all day!! My throat has been sore all day and the only thing doc is allowing me to take at the moment is Benadryl
Join
Your Privacy Choices
