2 Years in.....

[MovingForward4423]

So I am two years in after coming off treatment due to an SVT attributed to Ibrutunib. I still have a painful spleen that comes on with infection or vaccines.

Other than that I am doing well, bloods are normal. I hope to get another 2 years until I need to go back on treatment.

It's odd, I still get some fatigue, struggle with insect bites and bacterial infections. I guess its always there....

[Provence]

I am now 16 months off my treatment with Ibrutinib, which was halted because I developed intolerance to it. I feel very well, my blood counts are all good , but I do still have my strong reactions to mosquito bites and I do get tired more easily than I like. I do feel that that is the way my life is and that it will not change and so I must make the most of living within those limitations. It can be a drag since there are a lot of mosquitoes and other biting insects around here in summer, and even sitting in a car as a passenger exhausts me after just a few hours, but I am so grateful to have this break in the medication and to continue to feel so well. I feel it is better to accept what is and to be grateful for the blessing of a pause in the medication.

[CoachVera55]

Wow, so you came off of Ibrutinib for intolerance & not ineffectiveness & you got 2yrs. That sounds amazing & atypical. I had to come off of Zanubrutinib after 13 months because of intolerance & I’d love 2yrs off. You did not reach uMRD, right? I put on 40lbs with that drug & it will take awhile to get it off but I will. I’m very fatigued but my labs are good.

[MovingForward4423 in reply to CoachVera55]

You might find the weight gain is attributed to the down tick on the disease activity rather than the drug itself. As soon as I went on Ibrutinib my weight bounced back. One of the symptom I’m looking out for is weight loss,,,,.,

[CoachVera55]

When I track the weight gain it started with the untreated/under treated Pneumonia, steroids (which they happily prescribed but NO ANTIBIOTICS) & the stoppage of workouts for 8 months. I am a NASM Certified Nutrition & Fitness Instructor & my diet did not change because its my lifestyle. I lost 92lbs intentionally prior to starting treatment. Zanubrutinib went for my heart with chestpain in 13 days because I was doing my routine 1hr Cycling Exercise. I think that started the whole cascade of bad stuff but honestly maybe those drugs are just not compatible with me🤷🏽‍♀️

I had CT Scan & Echocardiogram changes that doctors downgraded or gave low priority too but they have been super accurate & that is what I follow now. These sophisticated expensive diagnostic tools have no reason to lie or exaggerate things, they clearly depict whats going on. I chose to follow the Oncologist who is not educated in cardiac/pulmonary area like those specialists. And even some of those ‘specialist’ try to downplay the findings but they just say silly stuff but put nothing in writing challenging the test findings, so I go with the written legal part of my medical record not on their undocumented unsubstantiated opinion 🤷🏽‍♀️

I am truly getting a whole new education behind ‘enemy lines’ lol. Everyone just doesn’t have your best interest at heart. At this new SIUH Northwell Florina Cancer Center, parking is atrocious with no thought of patients at all. Then this vertical model instead of horizontal & patients are sitting on top of each other. Well I asked the Nursing Assistant to put on a mask in a closed unventilated room with me & she gave me attitude. I don’t care about your attitude, follow my request or get someone else, periodt!!! Warrior Bae on Duty👊🏾

I can not afford to catch an infection from y’all & be out here begging for antibiotics ever again. No Ma’am No Sir 🤬

[MovingForward4423 in reply to CoachVera55]

I really don’t understand what you are trying to say. Maybe you could simplify your statement.

[CoachVera55]

Sorry about the long winded response. What I am saying is that my weight gain is attributed to a delay in providing antibiotics for a CT Scan documented Pneumonia!!!

I could not workout for 8 months & was given steroids. I did not have the Afib/SVT that is a common side effect with the BTKs but I had an infection that is very common, its the second most common side effect next to hemorrhaging but I was left begging for 3 months while I deteriorated😡

See you had the grandfather of BTKs Ibrutinib but I had the new kid on the block Zanubrutinib & if managed well I could of avoided these 40/50 lb weight gain, 3 ER Visits & now residual heart & lung issues.

I just hope now to improve my health & be off treatment for as long as possible. I had 13yrs 8mos of W&W, I had Chest Pain Side Effects 13 days on treatment & I just completed 13 months of BTK Inhibitor Treatment so I pray for 13mos to 13yrs without treatment 🙏🏾🙏🏾🙏🏾

I pray that you stay well & treatment free too. You guys give me hope, who have not reached uMRD but are stable 🙌🏾

I worked hard to get the weight off & I can do it again but slow & steady now!