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Thursday, May 2, 2024

Long Over Due CML Update

CML Update


It has been eons since I have done an actual health update.

One of the "good" things about having a chronic cancer (treatable, not "curable"), is that if you are one of the fortunate ones to respond to treatment, life eventually levels out and your body begins to accept its treatment and its new normal.

For me, this has been a blessing. I am not going to lie, the beginning was rough, and I have had many bumps along the road, but for the past several years I seem to have been able to just live. I do not take this blessing lightly.

One of the greatest struggles I have endured is my continual pleural effusions caused originally by Sprycel. A switch to Bosulif, has reduced my pleural effusion and eliminated my need for weekly thoracentesis.  

This has enabled me to return to a more consistent and active lifestyle, which I have embraced wholeheartedly. I often feel that I had better get to it, while the getting's good.

I have traveled to Europe numerous times, taken cruises with family and friends, and even made a major move from Idaho to Tennessee, in order to be closer to my grandchildren. All of these adventures are still more challenging than they were prior to my diagnosis, but I refuse to let CML stop me in my tracks.

Fast forward to the beginning of 2024. 


Because I moved away from California decades ago leaving behind my daughter, my sister and her family and a plethora of dear friends, we return every year from December through March just to visit and feel the love.

This February I developed a very juicy, annoying cough that lasted for nearly a month. Other than the cough, I felt fine. Many people in the Palm Springs area seemed to have the same cough, and I was told that the hurricane that went through this past summer stirred up a lot of "stuff" from the desert sand, thus making people cough,  so I was not concerned. It did cut into my swimming and hiking time so that did not make me happy, but otherwise, it was just a major inconvenience.

Or so I thought:

Prior to returning home the beginning of March, I went see my CML specialist for a routine cancer check. This year was no different except......it turned out to be not quite as routine as I have become accustomed to.

First stop, blood pressure; typical BP for me is 120/65 ish. First reading 188/98!!! Say What???  Check it again!! 192/99!!!! Check the other arm! 190/90!! At this point, I am totally freaked out! I have never, ever had a high blood pressure reading in my life. I know many would not be concerned, and many would say it was because I was "at the doctor's office" but I know better.



Next stop blood test results: all out of whack, particularly my potassium. Then came the thump on the back and I went from being a star patient to a problem child. The thump led to a chest X-Ray to confirm a large pleural effusion around my left lung. I suppose I was not surprised, as my last night of dancing left me gasping for breath before I even danced one song, and I also was unable to walk and talk; an increase in my shortness of breath.

All of these things were a huge reminder of the fact that yes, I really DO still have cancer. CML has been quite predictable for quite some time, but it certainly has not gone away. I'm not going to lie, I was freaked out, angry, and seriously concerned. 

The game plan was to take me off of Bosulif, for possibly a month, treat the pleural effusion with prednisone and two diuretics and return in one week. At this point, we do not know whether the pleural effusion is from the cough (my best guess), or the Bosulif (which I am reluctant to switch from) I suppose that time will tell. 

Next order of business is changing my flight home until I am stable, which is not a bad thing because I am with my daughter and her family.

After a week of medication and a medication break, coconut and banana smoothies from my daughter (high in potassium)  I am happy to say that my pleural effusion is reducing, blood work and blood pressure are coming back in line with my normal, and I feel less stressed about the situation. I think I will live and I am not as freaked out as I was.



What I have learned, living with cancer for thirteen years is that it gets easier in some regards, more difficult in others.

One more week of the same regiment and another trip in to Los Angeles and I am so grateful; my pleural effusion is better than it has been in eight years, and everything else blood-related is back in line with my normal.!! My x-ray is soooo pretty, that I may just frame it! I am reminded what it is like to really BREATHE and I am grateful for the excellent care of my CML Specialist. 


Now to monitor everything once I get home to see whether the culprit was the cough or the Bosulif. I am banking on the cough.

I will keep you posted.



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5 comments:

  1. Thanks for the update

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  2. Thank you for the update

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  3. Thank you for the lovely write up.

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  4. Good to know, best of luck!

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  5. Nice that you didn’t have to have a Thorocentis!

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Bricks for the Brave!!