Praising almighty God for answered prayers, Ev!

My family prayers for yours daily!

Blessings
Julie

Awesome news Ev! Very happy and thankful. Prayers still coming daily.

I haven't had my blood tested in almost six weeks. Next appointment is next Friday. I am stressing about relapse. Not really sure why....

John,

It seems that we all get anxious when we are about to have our bloods checked. I think I have finally gotten over that, but it took a long time (sadly, years!). Even though it is easier said than done, try to always think positively about the bloods, because they will be fine. You have already weathered the worst of the storm. It is time to enjoy some halcyon days.

Cliff

Sorry I hav not checked in! Ev, glad you're doing well! I'm doing fine also. Still dealing with nausea and nothing tasting good and no appetite but still eating. Can't wait for my taste to return! I'm day 25 post transplant and day 27 post chemo. Keeping you all in my prayers.

No apologies necessary, Tammy! Great to hear from you and to hear positive things!

Tammy,

UGH....the taste thing!! It is awful, but you will find foods that you actually enjoy eating. My foods were grapefruits (weird), linguini, and eggs. That was my entire repertoire for a while. All I can say is that your sense of taste will DEFINITELY come back. Keep eating as you are doing. I am so happy that things are on the mend.

Cliff

Ok so I'm worried. Friday my platelets were 110. Tuesday 49 and now today 23. Has anyone experienced falling platelets after transplant and been ok?

Well the highest mine ever got to since transplant was 70. And they have been kinda falling since they hit that high. My last few #s taken every other day were something like 54, 50, 42, then 37. I'm at my Friday outpatient visit now and am interested if they'll be up or down today. I'll post it when I find out.

As far as whether to be worried well from what I can tell platelets are a bugger for awhile for at least half the people post transplant. When I talked to my doc on Wednesday about mine he pretty much said GVHD was my issue.

There's a lot of info out there about prognosis with platelets at certain levels at days 60 and 100 and all that led me to believe was that everybody's situation is different and any concerns should be discussed with your doctor. I read an interesting story about a woman that had her platelets go up after transplant then come all the way back down to 5 around day 70. The report stated her platelets did recover and she was doing well.

Anyway this got longer than I thought it would but I'm right there with you wondering about platelets. I'm jealous of the triple digits you saw!

- Everett

My dr said my platelets dropping is ok for now as it could be due to GVHD (I have a rash on my back and peeling palms). She also said I'm still very early in process and my platelets may not stabilize for awhile. Bottom line: she isn't concerned and told me not to worry.

Tammy,

Although I am far from A SCT expert I have read a ton on the other AML support group I frequent at the lymphoma leukaemia society about 30 and 60 day count slumps. Please read below. I'm praying fire you and Everett daily.

http://community.lls.org/topic/16225-new-post-bmtday27-and-lab-values/?fromsearch=1


Blessings
Julie

Thanks for that, Julie! Not sure if I mentioned it but my whites were down this week. 2.9 on Monday so I got a shot of Neupogen which got me to 5.4 on Wednesday. But today I was back down to 2.8 and wondering if this was "a bad thing" happening. Interesting stuff that there is a common slump @ 60 days. I'm on day 53 I think. Platelets are 40 today.

Glad to hear you got a "don't worry", Tammy!

My platelets initially jumped to around 300 post transplant, then rapidly fell down into the 40s. Now, over six months later, they have stabilized in the mid 100s. I was pretty worried when they fell so rapidly around the 30 day point, and when my eosinophils came back at the same time, the doctors were worried about relapse. But everything resolved itself, and now the doctors chalk it up to my new immune system sorting itself out.
Ev, my white count dropped pretty rapidly around day 50-60 too, along with reds, and took several weeks to rebound. I wouldn't worry. I continue to pray for both of you!

Eve and Tammy

Jeremy's also dropped at this point after his transplant and I remember reading of several others on transplsnt team 2014 doing the same thing.

Hugs and prayers.

Karen

Guys,

When you get a SCT, there is more to the recovery process than simply getting the new stem cells. Every bone marrow creates an environment for the cells to grow, and there are expected fluctuations (some very significant) as the cells repopulate an acellular marrow. My platelet counts went into the 100,000+ range very quickly. My ANC, on the other hand, rose to a low normal range and then plummeted 3 months after transplant. I received IVIG (immune globulin). I don't know if that mattered, but my counts ultimately recovered and now all of my counts are in the normal range (4.5 years post transplant). It took years to finally achieve a totally normal hematocrit, and I hovered in the upper 30s for years. The situation in the marrow changes a great deal early on, but still has the potential to improve over several years. The cells that have the briefest lifespans (neutrophils and the platelets [which actually are fragments of cells]) fluctuate the most. Relax and believe what your doctors are telling you. They have seen it all. NEVER hang on your counts. It is not good for the head.

Cliff

Thanks for the words of clarity, Cliff. Worry sets in way too easily at the tiniest change.