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

Posted on January 22 2014 by Pat Killingsworth | 1,430 views

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

9 Comments For This Post

  1. Nancy Shamanna Says:

    hI Tom, Did the nurses get you to lie down and wave your arms in the air to help get the catheter started? i had to do a lot of ‘arm waving’ some days for that and of course tried to be really hydrated too. When the catheter was working I got hydration intravenously, and did try to drink a lot of fluids too. Good luck with everything!

  2. Russ Says:


    First off – God bless to Tom. I wish him well, and hope this works for him. (I am in Cleveland myself, but had my transplant at University Hospitals.)

    As to the radiation, I believe he is having that in place of chemo to kill off the bone marrow. I was at a local blood cancer symposium last fall, and one of the Clinic docs was talking about some upcoming trials for Allo patients. The idea is basically to use a gamma-knife to target the bone marrow and confine the damage to the marrow itself as opposed to the collateral damage caused by high dose melphalan. Turns out that they have been finding evidence that graft-versus-host occurs in areas that have had recent inflammation factor present. (And melphalan attacks the whole body, so essentially everything is inflamed.) The site specific radiation will hopefully prevent major GVHD and allow for smoother transplants. Pretty cool idea, I must say.

    Stay well,


  3. Christina Says:

    He’s a very brave person. I send him the best and most positive thoughts I can.

  4. Brian Helstien Says:

    Good Luck Tom, my thoughts are with you.

  5. Pam Says:

    Thank you Tom for sharing your journey. Wishing you all the best.

  6. Nancy K Says:

    There are a lot of people pulling for you Tom, myself included. I greatly admire your unsinkable spirit. This journey is a tough one and you are going down a pretty bumpy path right now. Keep looking to the other side. The best to you.

  7. Sheri from Idaho Says:

    Tom, thanks for sharing your story with us. And Pat, thanks for giving him an outlet to share it with us. At my last Dr. visit, I was told the next time I go through the SCT process, it will probably involve a mini-allo. So I am reading all of Tom’s posts with extra interest. Good luck Tom, and I will be thinking of you as you conquer this disease!

  8. Mark Says:

    HI Tom, Pat, and Russ,

    Best of luck moving forward, Tom. Positive energy being sent your way.

    Nice post, Russ. There are many different ways to do an allo transplant. GVHD is pretty much a non-issue when t cell depletion is used. Take note of this study from Sloan Kettering on relapsed/refractory myeloma patients and how little problem with GVHD the patients had.

    “34 pts with a median follow up of 31.6mos (range: 7.6 – 65.1 mos) of survivors are reported, median age 56 years (range 32 – 69). All pts engrafted promptly (median d+10, range d+9 to +12).TRM and acute GvHD (grade II-IV) at 12mos is 9% (95% CI: 2% – 23%) and 6% (95% CI: 1% – 17%). CHRONIC GVHD WAS NOT OBSERVED IN ANY PT.”

    It is great that allo docs keep improving the procedure. That is quite a contrast to the “myeloma thought leaders” that are satisfied with the mediocre results that 200 mg/m2 of melphalan produces for patients when they do an auto.

    Pat – I cannot believe I keep seeing the “C” word here on MMB. I always try and avoid using that “four letter word” here!!! I could not believe Dr. Durie actually included an allo study in his top studies from ASH 2013. First he starts discussing MRD testing and now allo transplant – Dr. Durie sounds more like Dr. Nicolous Kroger and Dr. Sergio Giralt every day!


  9. Bob Mungenast Says:

    Tom, thank you for sharing your story with us! Stay strong, and best of luck on this!

    Pat, I’m intrigued, also, by the use of radiation in Tom’s procedure. What do you think of Russ’s thought that radiation is being used in place of melphalan?

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