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I've had CML for 20 years and want to encourage others
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (102)Comment receiving replies
Thank you again Lori. I am doing fine on the hydroxy 1000mg in the morning. I will see what happens when I have to raise it another 1000mg. Maybe Sherrill agree to twice a day instead of taking 4 in the morning. What is also interesting Lori is I haven’t had to take Tylenol. I was taking 1000mg twice a day.
I was scared when they talked about chemo because I did accelerated chemo and radiation 17 yrs ago. For breast cancer. I was very lucky I was able to work through it all. I read if you have done chemo in the past it might not be as effective if you have to do it again. Also I read as a 76 yr old with CMML life span is 20-30 months. Yikes. That caught my attention. I think I better stop with google. I have my faith and decided to turn it all over to God. I also know that God doesn’t like it if we go back and forth once we ask him to take charge. Trying hard to stay out if his way.
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Hi @jacklyn, if your doctor does increase your dose of hydroxy from 1000mg daily to 2000mg, you might ask if you can cycle up slowly by adding a pill per day incrementally. I was able to do that with a few of my meds so that it wasn’t an abrupt change and side effects were kept to a minimum.
When hydroxy is used for patients with CMML, from my understanding, its purpose is to bring the numbers of white blood cells, including monocytes, down to normal. It may also help shrink an enlarged spleen. Your doctor will most likely check your blood numbers to see where your white blood cell count is before adding the increased dosage.
That’s amazing that your pain level has diminished so greatly and a positive side benefit! HU can slow or stop cancer cells from growing in the body so that may be why you’re feeling so much better. I had a similar experience when I started my first round of chemo. At that time I was in the hospital where the infusions were daily for 7 days. My sustained fever of 102 disappeared and I physcially started feeling better during chemo. So my first exposure to the toxins I feared in my imagination turned out to be my life savers in the end! ☺️
Ohhhh my goodness, yes, please stay away from Dr Google! 😅 To be sure, there are some great articles out on the internet but searching can also lead us to information that may not necessarily apply to us directly. Just reading a piece of mis-information can plant a seed in our imagination that can grow out of proportion! If I paid attention to my projected life span I would have been gone 5 years ago. I have no plans on checking out any time soon! So just enjoy every day! I read a bumper sticker yesterday. It said “Live life like they left the gate open.” and I’ve been doing that for years. Don’t worry about ‘what ifs’. ☺️
Good luck Tuesday. Let me know how your oncology appt turns out!