New to pancytopenia

[kirag1964]

Hi!

Two weeks ago I did my routine annual physical, and 3 days later (before 9am on President's Day - not a good sign!) got a call from my doctor saying my blood counts were low. He got me in to see a hematologist just a few days later, and they confirmed the low counts at that appt. We are obviously just at the beginning of trying to figure this out, but in reading some of your stories I can see why he was so alarmed! Here are my counts from that first CBC:

HG: 8
HCT: 22.9
WBC: 2.8
RBC: 2.14
Platelets: 28
Also, my MCV, MPH and MPV were all high - which indicates large RBCs I think.

The next counts from my hematologist have been similar, although my Hg is now even lower (7.3/7.4), my WBC are slightly higher (latest is 3.3), and my platelets also slightly higher at 29-37. But pretty much the same picture across the board, and all pretty darn terrible. In fact, when I went in last Wednesday the doctor was just glad that I was stable and not tanking further!

This was a huge shock to me because I am generally healthy and have not been feeling too terrible - certainly not as terrible as my numbers look! I have been more tired than usual, and having some difficulty with stairs, but was chalking that up to getting older and general stress (my mom has cancer; one of my kids has intractable epilepsy and may be getting brain surgery - I could continue the list but that will do for now!). But I am now trying very hard to take it easy because I do notice overdoing it causing some symptoms, in particular heart palpitations and general "shakiness."

Bone marrow biopsy is scheduled for Monday, with follow up with my doctor next Thursday. None of the other tests he has done have shown anything: B12 & folate levels normal; leukemia/lymphoma evaluation was negative; all my different white cells are at normal levels and no "blasts" (whatever that means). So hopefully the answers are in my marrow!

I'm a bit freaked out, and not sure what to think. Obviously something is wrong, but this really snuck up on me. I was glad to find this community, and I'd appreciate any thoughts about what they may be looking for, and what I can expect going forward.

Thank you!

[bailie]

Firstly, welcome to the forum. We understand the shock. The low counts definitely are affecting your stamina. I would wait for the results of the bone marrow biopsy before getting too excited. The blast count (basically immature cells that never grow up into normal cells) is very important.

Start keeping track in an orderly fashion of all of your results. This will help to spot trends. Don't rely on the doctor to do this for you. We wish you the best.

[kirag1964]

Thank you!

Yes, I'm trying not to get ahead of myself, but that's hard because I'm the kind of person who likes to research the heck out of things! I've done that for years with my daughter's epilepsy, and it's actually been very helpful. I'm just not used to having this be about me, and I'm not used to not feeling well.

I am bringing my husband to my follow up appointment so that I have a second set of ears listening to whatever they discover. Thanks again.

[Neil Cuadra]

Originally Posted by kirag1964

Yes, I'm trying not to get ahead of myself, but that's hard because I'm the kind of person who likes to research the heck out of things! I've done that for years with my daughter's epilepsy, and it's actually been very helpful. I'm just not used to having this be about me, and I'm not used to not feeling well.

My wife and I are also the types who research the heck out of things. That's what we did with bone marrow diseases, and it really helped us as we traveled the unwelcome journey we had found ourselves on.

[Charo]

Hi, when I first had low blood counts, I found it hard to keep track of things. There is so much new and unfamiliar information. Having a dedicated calendar or notebook where you write down questions as you think of them and keep notes of what the doctor says might help. Someone recommended that to me and I relied a lot on it during the early months. The reading at the National institute of Health website nih.gov is good. And, there are good treatment options out there!

[kirag1964]

Originally Posted by Charo

Hi, when I first had low blood counts, I found it hard to keep track of things. There is so much new and unfamiliar information. Having a dedicated calendar or notebook where you write down questions as you think of them and keep notes of what the doctor says might help. Someone recommended that to me and I relied a lot on it during the early months. The reading at the National institute of Health website nih.gov is good. And, there are good treatment options out there!

That's great advice! I'm used to tracking meds/seizures for my daughter with epilepsy, so I will set up a similar notebook for myself! Thank you.

I can't really think about treatment options until we have a better handle on what's going on! Hopefully tomorrow's bone marrow biopsy yields some information in which case I'll have more info by Thursday.

[Warburg]

How old are you? could you tell us what happened with your bone marrow biopsy?
Your blood-cell count was not at all terrible.

[kirag1964]

Originally Posted by Warburg

How old are you? could you tell us what happened with your bone marrow biopsy?
Your blood-cell count was not at all terrible.

My BMT showed ess than 10% cellularity (I'm 52). Diagnosed with AA in March at Upenn.

Currently running Day 4 hATG at UPenn with Promacta - it's been a bit bumpy but getting through it!

Only in this context would someone say those counts aren't terrible LOL but I know what you mean! My platelets hovered in the 20s before treatment, but my Hg went down quite a bit and I needed a couple of rbc transfusions. Luckily my ANC only went down to 1.3, but it was clear that things were not likely to trend upwards. My doctor did not consider watch and wait to be appropriate, and I elected to just jump into hATG now. I'm glad I did, because it's been quite hard on me, and I'm not sure I'd be able to get thru it if my AA had progressed farther!

Almost thru it and praying it works!

[Hopeful]

Hi Kira,

I think it was wise not to watch-and-wait if your were becoming transfusion dependent, and your doctors thought the cause was immune mediated.

The sooner you can wipe out the rogue T-cells, the better for the health of your remaining stem cells!

You are hopefully through the worst of your treatment and will start to feel stronger with each passing day.

Best of luck!

[kirag1964]

Originally Posted by Hopeful

Hi Kira,

I think it was wise not to watch-and-wait if your were becoming transfusion dependent, and your doctors thought the cause was immune mediated.

The sooner you can wipe out the rogue T-cells, the better for the health of your remaining stem cells!

You are hopefully through the worst of your treatment and will start to feel stronger with each passing day.

Best of luck!

Thank you!

It's honestly been a rough week. Apparently what my body likes to do when confronted with new medications is 1) get hives and rashes (I was not surprised because I am allergic to multiple antibiotics) and 2) swell up like a melon. My first issue was pretty severe hives on Day 1, but we were able to get on top of that. Then I got fluid overloaded (I was up at least 10 pounds in 48 hours - and that weight was taken after 2 doses of Lasix!), and developed pulmonary edema. At first I needed 4 liters of O2 to maintain sats in the 90s; now I'm on 1-2 liters, but my sats continue to drop into the 80s on room air, at least while I'm infusing ATG.

As a result, I have been threading a needle to get the medication in me! At first they thought I was having an anaphylactic reaction to the ATG, which would have been heartbreaking because we would have needed to discontinue treatment or switch to rATG. However, after that weight check it became clear that pulmonary edema was definitely the cause of my respiratory issues. But now I can only tolerate EXTREMELY slow infusions without exacerbating the edema - so instead of what most people do (first infusion slow, following infusions faster), my first infusion was 12 hours, and the following ones have been 24 hours (the second day was interrupted halfway thru by my respiratory distress and will be made up at the end on "Day 5").

So as long as the infusion is slow and I stay on oxygen and take benadryl regularly (I can now recogize the early signs of an inflammatory response so do this as needed), I am getting thru it! At this very moment I am more than halfway through bag 4, and then will just have the "make-up" bag from Day 2 to finish. Luckily I walked in here in pretty good shape or I'm not sure I could have handled the complications. I'm so glad I didn't wait!

I also know that I'm not going home until my sats are better on room air, but I don't think we can really address that until I'm done infusing.

And yes, my doctor definitely thinks it's autoimmune. I have a small PNH clone, and my telomeres are good. In addition, I have been able to use the new protocol with Promacta. So the chances are very very good that this will work (85-90%)!