I just asked my doc if he had heard of the 60 day slump. He said no so I explained what little I had read. He said I should stick to I.T. :> jokingly, of course ...

Hi all,

Just checking in. I'm day 56 and missing my home and family terribly. Tired of the hotel life but it's better than hospital. No real issues other than minor skin GVHD. Day 30 chimerism was 100% donor! Hoping that stays this way. Started a study thru loyola to assess if these two drugs (Vidaza injections and Valproic Acid orally) lower relapse rate. No downside other than the injections burn! Ev hope you are doing well!

Great news! Are you seeing Dr Stephanie Tsai at Loyola?

Yes! She is my dr. Love her!

Such amazing news Tammy!!! Praying you are home soon with those three precious boys and the love of your life!!!

I pray for toy every single day!!!

Blessings
Xoxo
Julie

Awesome news! Very happy to hear Tammy!

Great to hear, Tammy! I wasn't expecting to be told I could go home before day 100 but I hope the same surprise is in store for you!

Well, I'm back in the hospital for a few days to take care of a blood clot in my left leg. Been bothering me for a few days so we did an ultrasound at my weekly outpatient appointment which confirmed DVT. Doc has me on a heparin drip along with getting platelet transfusions to keep them above 50.

Was surprising to get the clot given my platelets have been struggling to get close to 50 for weeks now, along with the fact that I've been fairly active including plenty of walking. Oh well, I've been on the interesting side of odds for a while now.

My WBC was 1.7 yesterday and hemoglobin was 7.0 today so I'm also getting a red blood transfusion right now. On Day +82.

Everett,

So sorry you are back in the hospital but grateful the clot was discovered. Praying for your continued remission and recovery.

Blessings
Julie

Thank you, Julie!

Quite a few people (myself included) are getting a big of a laugh out of this. Previously with the Essential Thrombocythemia there was a lot of concern that I would get a clot due to my platelets being in the millions. Just before my consolidation chemo there was even some disagreement on giving me high doses of Hydrea to bring them down due to the clotting risk. Well, I never got a clot then but now I get one with my platelets at 40k. Go figure!

Oops ... "bit" of a laugh!

That is crazy! So glad they caught it. I'm nearing three years out from chemo, praise God and my platelets have never made it to the normal range although my clotting factor is great. When I had my hickman removed which was in almost a year, much longer than most I hat my clotting checked because my platelets were so low still. I had a very high factor. My med team kept me on Coumadin the whole time even though my platelets were always Rock bottom.

Interesting. I'm suspecting low counts are in my future but it's good to know it may not be that big of a deal.

Everett,

DVTs have more to do with the clotting factors than they do with platelet counts. I am glad they caught the DVT. You should be fine. With regard to your counts in general, as I have posted before, the reconstitution of the bone marrow takes a variable amount of time to occur as the transplanted marrow gets used to your bone marrow environment. Your counts will rise with time. You have a great attitude. Just focus on getting out of the hospital.

Cliff

This new format is awful! Haven't been ignoring you, just didn't have time to figure out how to find you! My 100 days are up Thursday and I can return home to my family.