I wanted to let you know that I'm faring well with the blood test results on the trial thus far, and have my energy back which is great. I hate the thought of having to have so many CT scans on this trial, but I also understand why being something that is relatively new.
Yesterday, I read a post about someone who is dealing with a cough on a different drug, and what I'm experiencing has been a periodic cough, but also either a persistent nasal congestion or a very "leaky faucet", so to speak. I'm not able to taste or smell, sigh, and tested negative for Covid. Is it possible these symptoms could be related to the drug, and how would one even know, if so? If it is a cold, it's the longest cold I've ever had, being over 3 weeks.
Thanks!
Schubert
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Schubert1870
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One of the reasons the researchers ask you to keep a diary of all symptoms, and ask you the same long laundry list of questions (have you noticed a change in eyes, ears, bathroom, etc.etc.etc.) most every visit, is how these side effect profiles are developed.
No way to tell if it's increased sensitivity to fall tree allergens, or the drug itself doing it, or if you've picked up one of the myriad of respiratory things going around. I had an interesting conversation at the dog park today, with a woman who told me she got (don't recall the name) from her pet birds.
Thank you, SofiaDeo. Initially, the scariest symptom I had, and thank goodness no longer, were my eyes being blurry. The oncologist notated it right away, along with my now cold or whatever it is symptoms. Wow, how odd contracting something from a pet bird, but then again in today's world, I'm not all that surprised. I love petting everyone's dogs where I live, so I hope they are safe to be around! 🐕
She had a number of them, but yes, it is odd, isn't it!
I'm sure if you aren't putting your hands in your eyes/on your face, or in your food/mouth, before washing them, petting dogs is OK. When I left the dog park I had an itchy eye, and rubbed it with a knuckle instead of a finger tip. I just try to be mindful of hands/fingers, and where they have been.
Glad that eye problem went away for you. I hope it doesn't pop up at higher doses in others.
I try to be mindful as well, but since I contracted something here, I was likely in an unthinking moment, probably in a hurry to have to be somewhere else. Lesson is always in learning mode to keep my head proactive. 🙂
It will come more naturally with time. For me, after first working for years in a microbiology lab handling potentially infectious patient specimens while in college, then later mixing standard chemotherapeutic agents during my career, I already had the "mindfulness" down pat
I experienced the blurry eye phenomenon during the Gazyva infusions. My sight recovered quickly and I dismissed the incidence. At about 3 years post treatment, I started experiencing progressive vision loss. About 60%, distortion, and blurry in the left eye. Right eye varies as the retina tries to heal and then digresses constantly. The diagnosis given was CSR - my.clevelandclinic.org/heal...
Research shows extended use of Corticosteroids/Prednisone etc... as possible influences for retinal detachment.
The aging process is also known to include vision problems as are many other challenges that we experience when we live longer. Therefor in my view, I have accepted the condition as a consequence of living longer, as there is no absolute proof of the cause nor is there a curative resolve.
I am advised by the optometry professionals that lutein supplements before, during and after treatment may improve the retina and macula health. There again, no absolute proof.
If I could do it over again I would supplement with the lutein as there is no harm in it, and if it works; Can't put a price on clear vision! Nothing to loose, Much to gain.
Glad you are having a lot of success with the CLL treatment. I am nearing five solid years of remission since discontinuing O+V.
First off, I am so happy for you about your lengthy remission since discontinuing O+V. That is music to my ears.
Ironically, the year I was diagnosed with CLL in late 2011 was around the same time when my right eye had a detached retina. Emergency surgery was needed the next day. The surgeon also did laser work on the left eye as she notice small holes forming. Fortunately, I was able to stay at my brother's house for a week afterwards. Along with that came double hip replacement in 2012, and ever since, I have often wondered if there was a correlation with everything happening all at once pretty much. Oddly enough, in a way, I feel better at 67 than I did back then.
Thank you, FiArt12X. I must admit it was scary at first to be on a trial, but now would do it all over again. Attitude plays such a major role having chronic cancer.
I was on a trial when I first started treatment in 2011. It helped that I was given a medical card saying "warning patient on ARTIC trial" It appealed to my inner macho. A small reward for what was a version of FCR which was hard going.
It is intimidating to be taking medications for CLL. Being treated for CLL was the first time I had taken any medication beyond the ordinary so I was nervous. I’m glad you’re sharing your symptoms with your doctors and hopefully it will become clearer what’s going on.
Thank you for your sentiments. I never thought of taking CLL drugs as intimidating, but now that I think back to Imbruvica days in 2014-15, that feeling was there. Some of the best words another patient said at the time was to think of them as taking BP medication or Levothyroxine that I was already taking. Self-psychology works for me!
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STATIC dilemma
Untreated CLL with 17 p deletion
