Two days after my diagnosis I was checked in the hospital for 5 days. I had four blood transfusions, two spinal taps in addition to daily chemo IV drip and in pill form. Then I was released.
Now they found traces of cancer cells in my spinal area. I have to back to the hospital for 7-10 days where I’ll be getting chemo injections via spinal tap every other day.
None of this is particularly painful. I haven’t experienced side effects to speak of, other than some fatigue. I don’t even feel sick. The future is filled with uncertainty, especially the next two months.
It sounds like you have cns involvement. My induction was a 30 day stay in the hospital. It was 24 hr chemo for a week straight. So after bringing the wbc count to zero, they keep you there till neutrophils reach a safe level. Without complications , it’s a 30 days stay.
I went on to have a donor stem cell transplant. They discussed it at about the 2-3 week mark when the mutation info was fully available. Have they discussed this as an option?