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Hope for a cure: Tom’s allo transplant journey (Part Five)

Home/Inspirational, Side effects, Transplants/Hope for a cure: Tom’s allo transplant journey (Part Five)

Hope for a cure: Tom’s allo transplant journey (Part Five)

Allogeneic (donor) stem cell transplant patient, Tom from Ohio, is in the middle of the action now.   Here’s an update in his own words:

January 16

Tom's drugsStopped at pharmacy on my way out of the clinc. $1500 and two bags later I have all of my necessary transplant meds. These are in addition to the drugs I’m already on now. Have meeting with pharmacist during chemo session to go over pill schedule.

January 17

Made it in for the beginning of the process. On my calendar they refer to it as day -5. Day 0 (zero) is transplant day. Unfortunately Tomthe glitches continue. I’ve been diligent about maintaining my Hickman (catheter); flushing the three tips daily and replacing bandage weekly. I did it all; no redness no blockages. I was looking forward to not having to get poked. Guess what, Hickman didn’t work! Nurse could flush it but could not get any blood return. They tell me I did everything correctly but “this happens every now and then.” Lucky me! All the nurses, most of whom I’ve worked with for years stopped in, shaking their heads at my luck. Tolerated the Fluderabine fine.

January 18

The next day they hit me with heparin and one other clot buster–I can’t remember the name of. Its working fine now. First day of radiation tomorrow morning.

January 20

Day one of radiation done and not so bad. Day started at 8:15 for one hour infusion of saline, along with zofran and Ativan for nausea. I have good kidney function, but apparently the extra hydration is to further protect the kidneys. No major nausea, just feel a little beat up. Was radiated for 30 minutes; 15 minutes facing forward, 15 minutes facing back. They made a big deal about how hard some find it to stand still for 30 minutes. I figured it would be no problem, but honestly the last 5 minutes were tough.

Started drugs today as well; 175 mg prednisone daily and day one of immune suppressants. The prednisone will be tapered over three weeks, but that amount will probably not be fun.

CBC showed no drop in counts yet, but it’s coming.

Tomorrow is last day of radiation and then cell infusion. I feel odd about it. I know some call it a birthday. I don’t really feel that way. I think I’m mad. Maybe the steroids are kicking in, but I don’t see tomorrow as an upbeat day. I feel like I’m picking a fight. I anticipate being knocked down, but I also anticipate getting up every time no matter what.

Tom, I’m sure our readers appreciate your honest account of what it’s like to go through something as traumatic as this.  I know I do!

It will be difficult for me to report about Tom’s progress in real time.  I’m sure he will find it tough to write even short updates soon.  But whenever and whatever I hear from him, I will pass along the news.

Is it just me, or are you surprised a mini-allo patient is being exposed to so much radiation?  I thought mini’s were supposed to be less invasive; a sort of “allogeneic light.”

Best wishes, Tom!

Feel good and keep smiling!  Pat