A Treatment Vacation with Destination Unknown
I have been going through a difficult patch in my blood cancer journey for the past several months. After nearly a year of not seeing my oncologist/hematologist, I recently had a visit and he got caught up on numerous medical problems I’ve been experiencing.
Catching up after delay in healthcare
It was not by choice that I didn’t see him; nurses and his assistant filled in while I guess he was busy dealing with COVID-19 and other patients.
My diagnosis of chronic myeloid leukemia came 7½ years ago. For the past six of those years, I’ve been treated with a tyrosine kinase inhibitor called dasatinib or Sprycel. I had reached “undetectable” levels.
Problems with side effects
Being “undetectable,” does not mean that there are no side effects or problems to battle. This past year in particular has been a terrible strain both physically and mentally.
To get to my point, my hematologist, a CML specialist, believes that issues I’ve been having with my veins have not been properly tested. He also said Sprycel could be causing an imbalance of oxygen versus blood and/or other issues impacting my arteries.
Who doesn't want a vacation?
Until I can get to the bottom of it and see a vascular surgeon, he is pulling me off Sprycel.
When I jokingly but half-heartedly commented that I always wanted a “vacation,” from treatment, the doctor looked very serious and shook his head. “No, you don’t,” he said.
Not this way, at any rate.
Some patients are given TKI breaks if their numbers are staying low. Quite a while back I asked if I could have such a break. He said I was not a candidate because my case is “complex.”
But now I am on an enforced “break,” because if Sprycel is negatively affecting my vascular system after all of this time, we can’t keep allowing that to happen.
I’m a bit frustrated. It’s been nearly two weeks now, and I still haven’t received a phone call to set up this “emergency,” visit with a vascular surgeon. My message to the doc on this subject remains unanswered.
Russian Roulette anyone?
Meanwhile, I feel like I’m playing Russian Roulette. I know many patients go off their TKIs and do just fine. They are fortunate that their leukemia levels remain low or non-existent.
On the other hand, some people lose their response after being off the drugs for a while.
It’s a chance you take for the greater good. But that doesn’t make it easier.
No pills for now
As for me, I’ve settled into the routine of not having to shove Sprycel pills down my throat with my evening meal. Every now and then, I think about it and then remember, “hey, I don’t have to take Sprycel,” tonight.
There is a worry that I’ll have some withdrawal effects. My joints and bones certainly ache but I don’t know if that is from my pill vacation, leukemia or something else.
Obviously, I hope when it is time to go back to treatment, everything bounces back and I reach “undetectable” status once again.
If I don’t, it will be another challenge to try to overcome. There are a lot of obstacles and roadblocks on this blood cancer trip.
I’d love to hear stories from others with CML or other blood cancers who had to stop treatment for some reason. Good or bad, their stories will help me feel less alone.
Do you experience brain fog?