Linda Cohen is a survivor of small lymphocytic lymphoma and was identified in 2009. Compensate for all of Linda’s blogs right here!
I’ve had lymphoma for 15 and a half years — however who’s counting? I’m! That’s for certain. Once I was first identified, I learn every little thing I may about my continual lymphoma. Again then, the typical survival fee was mentioned to be 10 years. That was a few years in the past. Lately, I made a decision to look once more to see what’s being mentioned as we speak. Most sources now say that individuals can stay for many years, particularly if identified early. That’s definitely a way more optimistic outlook than what I learn 15 years in the past. Blood cancers have benefitted from a lot unimaginable analysis, resulting in new therapies and medicines.
I’ve been on Calquence (acalabrutinib) for 2 and a half years now. A few of you might be acquainted with the brand new minimal residual illness (MRD) blood check. When my physician first examined me, he informed me it was so new that medical doctors weren’t even certain the way to interpret it but — there was no established protocol. I’ve now been examined twice, and fortunately, every time my numbers have gone down.
Three months in the past, my physician urged I cut back my dose to at least one tablet a day as a substitute of 1 each 12 hours. I used to be hesitant, however he was involved about some negative effects, particularly how simply I bruised. Then, at my most up-to-date go to, he informed me he’s really taken some sufferers off the medicine fully as a result of new analysis exhibits the most cancers could not return for a few years. “It’s higher to be off of it at this level, together with your MRD quantity so near zero,” he informed me. “It can come again, however you possibly can all the time return on it. Who is aware of what number of years that may take? Being off the drug additionally has its advantages.”
Nonetheless, I felt scared.
I really feel so good on Calquence — residing a standard, productive life. I requested if we may wait three extra months and do the MRD check once more at my subsequent appointment. I wish to see what occurs after being on a decrease dose for some time. I needed to see how my numbers have been trending. My husband was prepared for me to cease taking it, however my physician heard my hesitation and agreed to attend till our subsequent go to to resolve.
Now, I discover myself serious about it on a regular basis. Perhaps this may be an excellent time to have my knee changed since I’d should cease the medicine earlier than and after surgical procedure anyway; it acts as a blood thinner. Perhaps I may begin consuming grapefruit once more, one of many solely meals I’ve prevented as a result of it interferes with the medicine. Perhaps I received’t get as many infections — Calquence suppresses the immune system, and my white blood cell rely is on the low facet.
Writing CURE blogs helps me course of all that I’m going by and I’m beginning to persuade myself that I ought to take my physician’s recommendation. Perhaps now’s the precise time to cease this BTK inhibitor. It’s been killing not solely my most cancers B cells however all my wholesome B cells as properly.
I additionally wish to emphasize how a lot writing helps me. That’s why I’m so grateful to my daughter, Jaime, for giving me my first ten-year journal over a decade in the past. I’m now on my second one! It has simply sufficient area for a number of ideas every day, with all 10 years listed vertically on one web page. It’s not intimidating, and it’s so attention-grabbing to see what I wrote presently final 12 months — and even years earlier than.
So, I’ll depart you with this advice: Purchase a 10-year journal! (You will discover them on Amazon.) And bear in mind, shopping for a 10-year journal is a bit of like shopping for inexperienced bananas — it’s an indication of optimism.
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