First, thank you to all of people that send me encouraging comments. I understand in your heart and minds the empathy and wishful thoughts everyone has on this sight.
My intentions for posting my experience is educational in the hopes many that may be presented with similar situation could learn from these postings and take from it what applies to you. CLL (I’m guessing other cancers as well) affect each person more individually than we anticipate. Circumstances dictate when( maybe never) and type of treatment available and best for you! My hope is truly most of you will never have to consider what I’ve had to do. In reality the percentages are very high you won’t!
On Sept.8 Sunday, day +73 I started to have some diarrhea. Normally I take an Imodium or two and it takes care of things. Labs on Tuesday and a Thursday with clinic and lead Dr. Encouraging news from labs about rising platelets 67 & 74.; great trend. However, the diarrhea has continued and it is with great physical discomfort and sometimes out right pain! Imodium has not been its usual effective response.
My Dr. does not seem overly concerned even if it is Graft Vs Host Disease (GVHD) Most of my other labs are still in the normal range, or holding fairly steady. She decides to put me on a low dose of Prednisone 40mg until next week’s clinic to see how I’m doing. She has also orders a stool sample and colonoscopy to rule out Cdif and GVHD. No Cdif, the earliest c-scope available is Oct. 10. Hoping for a cancellation to get me in earlier. I have experienced a waining of the discomfort, pain, frequency and immediacy of the diarrhea since starting the Prednisone Friday. It’s now Saturday October 14 day +79. I do still have the diarrhea.
As you are able to access this can be a bumpy road towards recovery. Whisful thinking and some great days bring naive delusions I’m out of the rough waters and smooth sailing is ahead. Realistically I know I’m closing in on day 100 when many medications are stopped and expected less side effects will be experienced. Yet, I’ve been told by other BMT recipients and medical professionals it takes up to a year to feel”normal again. Looking forward to those benchmarks.
My journey with Ibrutini 🏃🏻(Day 19)
