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Just had labs and 3rd infusion of Rituxin. My absolute doubling time was 3 months. The lymphocyte levels remain unchanged, at a high level.
The oncologist said the lymphocyte levels may remain as my new normal. The pyoderma gangrenosum has stopped its growth.
The oncologist stated she would not have begun therapy but her discussion with my dermatologist made her agree to begin Rituxin. She does not seem to understand or acknowledge there is a connection between PG and CLL nor is there a need for treatment. I have sent her articles from medical journals but I don't know if she reads them .
Last week her PA said normal therapy is 4 weeks of Rituxin then go to monthly. The oncologist seems to be planning the 4th infusion then a blood test to see if treatment is warranted . I asked if my IVHG was mutated or unmutated and she didn't answer, just said she was going to run a flow cytometry test again .
Last evening I got results from a manual reading of the most recent blood test and smudge cells remain at 2+ (more than half the lymphocytes are smudged) and now it says my platelets are enlarged .
I'm not sure what that means but it can't be good .
I am very confused and don't know what to do. The oncologist doesn't seem to know or understand my condition.
Replies to "Just had labs and 3rd infusion of Rituxin. My absolute doubling time was 3 months. The..."
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Hi Carol, I can feel your anxiety growing…so I hope you don’t mind but I’m going to suggest to avoid reading your blood work or at least ‘reading too much into your blood work’ and wait for your doctor’s interpretation. Often it’s so easy to take things out of context and fear the worst.
I know you’re concerned about seeing smudged cells and enlarged platelets. Smudged cells are basically cells that collapse and ‘smear or smudge’ while being prepped for a look-see under the microscope. The cells have weakened outer membranes and from my understanding, are very common in patients with CLL. Enlarged platelets, again from my understanding of seeing this in my own blood work, aren’t always of concern unless they are all large. Finding a few enlarged platelets in blood work can be a related to a variety of reasons. I remember being alarmed but they were of no consequence.
I think what will be important is the cytology report to see how well the treatment is working for you. Rituxin is one of the first line treatments for SLL/CLL. Because it’s an anti-inflammatory medication it might also help with the PG so that is likely why your doctor suggested the treatment. I was on Rituxin for a month and it was a life saver for me.
It doesn’t sound as though you have a great communication level between you and your oncologist. Not that she’s dismissive but she sure doesn’t sound like she’s willing to dig more deeply into your co-conditions or help you find answers to your questions That’s incredibly frustrating.
Is this a hematologist oncologist, a doctor who specializes in blood cancers? Are you able to find another provider for a 2nd opinion?