This post might be of most interest to those taking Jakafi and preparing for transplant, although what happened to my husband yesterday is uncommon.

Things seemed to be going smoothly R’s 1st day and a half in the hospital. His plan includes 3 days of “Fludarabine” chemo, the milder chemo that wipes out much of his immune system followed by 2 days of Melphalan, the intense chemo that kills off most of the cancer cells. Donor cells get infused on Friday.

R was in good spirits yesterday morning—walking the halls and even trying meditative tai chi!

But things fell apart around noon.

The moment the 2nd day’s chemo drip started he felt short of breath, his face turned red then purple, his eyes got bloodshot, and he started shaking (A LOT) because of extreme cold. He also threw up a few times. Despite all this, his vital signs looked normal! The nurse called for an emergency response and 10 staff ran in. Something was clearly wrong and getting worse.

They immediately started antibiotics in case of infection, gave him a mild steroid in case of inflammatory problems and a Benadryl in case of an allergic response. His breathing remained strained for about an hour with a slight dip in oxygen saturation rate . His face stayed flushed/purple for a few hours. Not long after the initial incident he got a fever of 101 F.

An allergic reaction to Fludarabine is rare and they had JUST started it when he went downhill. They weren’t even sure a single drop got in because they start with saline in the line.

After multiple conversations the doctors realized that R’s November 4 collapse happened the morning after he missed a Jakafi (targeted myelofibrosis medication) dose the night before because he fell asleep early. He’s been on Jakafi for about 2 years. Starting a few days ago, docs began tapering his Jakafi dose, a necessary step before the transplant.

What doctors think R experienced in both cases was an extreme Jakafi withdrawal, occurring in 1-5% of cases (according to research on the web). This can happen even with a slow drug taper or one missed dose. Caveat for every one of my posts: I am not a doctor so do your own research and talk with trusted medical professionals.

After his breathing returned to normal and he felt much better they restarted the Fludarabine drip and everything went fine.

The steroid dose most likely controlled further Jakafi withdrawal.

The emergency hospitalization in November also resulted from exceptionally rapid growth of his spleen causing bleeding into his abdominal cavity. That probably came about because of a rebound effect from coming off of a drug study medication.

But, hey! The transplant is still on schedule. R is in excellent spirits and zooming around the hallway to get his steps in. He took a shower and reorganized his room furniture!

He starts Melphalan tomorrow. The unpleasant side effects of that will start a few days later. He’s prepared for hair loss with 3 different caps, one of which has pickles on it. 😬