May 17, 2017

Just When You Think You Have Things Figured Out…

Today was my appointment to meet with Dr. H and the MUD (transplant) Coordinator and go over the details of my upcoming DLI (Donor Lymphocyte Infusion). For those of you keeping up with all the abbreviations connected with my disease and treatment plans, you get a cookie! Call Bethany! ☺

As of right now, the DLI is scheduled for July 26 with Rituxan infusions scheduled the two Fridays before and after. I’ll be getting a PICC line (Peripherally Inserted Central Catheter) since my veins are 1) so small, 2) so wiggly 3) so tired and 4) I will be receiving so much stuff in such a short period of time. This will definitely be so much easier on me.

However, and here’s the main reason for me still being awake and writing this post tonight, none of this will even happen if this RASH turns out to be what my doctor and I both think it might be. GvHD...Graft versus Host Disease. Yep. Well, how on earth could I possibly have GvHD before I even have anything done, you ask?! Good question! I did have something done…five years ago! And I’ve already had mild GvHD. I asked my doctor today if she thought my mixed up chimerism and increasing lymphocytes might have gotten together and decided to revolt? While a long shot, she said it was definitely possible. Normally, if a transplant patient were going to have ongoing chronic GvHD, they would have continuing visible symptoms. I haven’t. I have had rashes a few times, but not continually. I have also had some minor stomach issues (gut GvHD), but again nothing ongoing.

So what does this mean and how does it affect the DLI. Two fold. First of all, if it is indeed GvHD, the DLI has to be cancelled because I have to be GvHD free for at least six months before treatment. Second, the DLI might not end up being necessary (at this time) IF the rash is GvHD and IF the GvHD prompts the GvT(L) effect. WHAT? You’re killing me, Tamara! There is a negative and a positive side to GvHD. We want a little of it so we know that the donor cells are doing their job. We just don’t want so much where they try and kill me! GvT(L) stands for Graft verses Tumor (or in my case Leukemia) effect where the donor cells seek and destroy the remaining bad guys. So the balance is for the donor cells to kill the bad guys without killing me (the host) in the crossfire.

The possible crazy, miraculous positive that we should be finding out with Friday’s biopsy is whether or not this rash is GvHD. Then we can pray for the GvL effect to take off and perhaps God will choose to miraculously (I can’t think of another word) get my numbers back on track without going through treatment! If it is just a rash, please pray that they can get it under control quickly and we can move on with the plan as it stands now. I’m good either way. God already knows the outcome. I’m just here for the ride. And it always seems a bit crazy from this side!

Stay tuned.


  1. Praying. I understood all that of course. Go Mr. RIS (Rogue Immune System)! Do your damage in the right places!

  2. And thanks for the friend on FB.

  3. It's nice to have someone who actually understands all of this! Glad you are well! ❤️