Losing it

[misscakes]

Went to the hematologist today for a check up. This is what my CBC looks like:

WBC 3.0
LYM 2.0
GRA 0.8
LYM% 66.1
MID% 8.6
GRA% 25.3

RBC 2.34
HGB 8.8
HCT 26.7
MCV 114.1
MCH 37.6
MCHC 33.0
RDW 14.8

PLT 17
MPV 9.1

And my doctor is still telling me that we're waiting for my AA to get worse before we do a BMT. My biopsy last month showed 10% cellularity.

Any opinions out there?
I'm starting to freak out and think my doctor is incompetent.

[riccd2001]

I'm sure you'll receive some good opinions here. It might help if you could tell us what and when your previous CBC results were. They can say a lot if there is a trend showing.

[misscakes]

Sorry

CBC 10/10

WBC 3.2
RBC 2.74
HGB9.9
HCT 28.7
MCV 104.7
MCH 36.1
MCHC 34.5
RDW 15.6
PLT 38
MPV 12.2

CBC from 11/15

wbc 3.2 (down from 3.9 Oct 31)

lym 1.8

mid 0.3

gra 1.1

lym% 57.7

mid% 8.0

gra% 34.4



rbc 2.34

hgb 8.9 (down from 9.8 Oct 31)

hct 26.3

mcv 112.2

mch 38.0

mchc 33.8

rdw 15.1



plt 25 (down from 32 Oct 31)

mpv 9.7

(I dont have the full count from Oct 31, just the notes my hematologist made to show the decrease)

[evansmom]

Hi there,

If you could add a signature in "my settings" that included your age, date you were diagnosed, treatments you have already received including past transfusions if you've had any, that could help complete your picture.

Your counts do seem to be trending down and if they go down much further, you'll be needing platelets and red blood cells to sustain your energy and safety. Your ANC isn't too rich but you're safe from infections for the most part as long as it stays above 500.

When you speak of going to BMT does that mean you've had a round of ATG already? If you haven't had ATG yet and do not have a well matched sibling, I'd think you should be having ATG in the very near future, i.e. next few weeks to a month from now, provided of course your counts continue as they are currently or especially if they go down further. If you've had ATG and have had no real sustained response, then it is quite likely that you'll need to light the fires re: BMT. A few things about delaying BMT to consider: the longer you go with an ANC of 500 or below, the more likely it is that you will pick up a potentially lethal fungal infection; the more red cell and platelet transfusions you receive, the more antibodies you develop (not to mention iron overload which can tax the liver). Both of these factors can seriously impact the success of a BMT. All that to say that time is of the essence. You don't need to prepare for either of these treatments tomorrow, but discussions regarding next moves including securing a potential marrow donor should be happening now.

Hope this helps.

[misscakes]

I will add that to my signature! Thanks

What do you mean by ANC? I'm kinda new to all of this. I've had 3 platelet transfusions this year to maintain my platelets. I've had 2 bone marrow biopsies; one in May and one this past month October 10th. The first showed cellularity at 20-30% and the latter showed 10%. So it just seems to me like I'm a ticking time bomb waiting to crap out.

Neither of my doctors have ever even mentioned ATG. They seem to have absolutely no game plan. I do have a sibling that is getting HLA tested this week but they said even if she's a match it'll be a while before they decide to do the transplant.

[misscakes]

I googled it! How do I get that number from my CBC though? My BMB says "white cells are mildly decreased with absolute neutropenia".

[evansmom]

I believe your lab calls the ANC-absolute neutrophil count- GRA or granulocytes. Same thing so your ANC therefore is 0.8 (or 800, 300 higher than the minimally safe 500) so you are still protected.

Where are you located? If your docs haven't brought up the subject of ATG and you've been under their care for AA since May PLUS you've had some platelet transfusions they HAVEN'T GOT A CLUE. There are protocols they should be following. You need to get yourself under the care of an expert in AA. And furthermore, if your sib is a good match and your counts continue as they are, the right thing to do will be to go for BMT sooner rather than later. Wait and watch can be appropriate provided the ANC stays above 500(and you are feeling well without infections or fevers), and you do not need any platelet or red blood cell transfusions. If you fail any of these three criteria, you'd best be getting treatment of some sort.

[misscakes]

I am in Savannah, Ga. My doctor referred me to an "AA specialist" in Atlanta @ The Winship Cancer Institute at Emory. Neither of them have mentioned any sort of treatment plans other than a BMT at some point. Since my platelets are now at 17, my hematologist wants to give me a transfusion on Monday but I really don't want to just keep getting transfusions every week until they figure out what they're doing as I know it will increase the odds of my body rejected the transplant. My doctor told me today that they have found several preliminary matches through the National Bone Marrow Registry but they just arent ready to do anything. My doc here suspected AA whenever he first started seeing me and did the first BMB back in May. I was pregnant at the time and no one ever talked to me about saving the cord so I could use that instead of looking for a match. The more time passes the more I feel like I'm just going to die waiting for them to make up their mind. Now my doc wants me to see him 2-3 times a week to be monitored and transfused as necessary. What am I supposed to tell me job? Oh hey,they cant make up their minds so how about you pay me to keep leaving work. I have had a low grade fever for a few days now. I feel too tired to get out of bed and my bones hurt to tears constantly. I know I'm rambling now I'm just so frustrated!!

[evansmom]

First line treatment without sibling match is ATG, not BMT. Your quality of life is suffering and if you're having low grade fevers, you have the potential to get really sick really quick. You need to bring it up at your next appt. that you have informed yourself and that you now know it is ridiculous to be in limbo like this and that if you are starting to need transfusions and all your counts are low and you are suffering that you insist they find some protocol that describes the proper application of ATG, with prednisone and cyclosporin afterwards etc. etc. You'll have to step up and become a strong advocate. If you are tired, maybe a family member or good friend could be with you at your appts. and bolster you in your efforts to get them to start taking proper care of you.

Tell your docs you're done with the "ignoring the problem plan" and that you need to move on to the "let's do something to fix this plan".
Have an "enough is enough" attitude with them.

[misscakes]

Thanks for the advice

Sometimes ya just need a good kick in the pants!

[Neil Cuadra]

Originally Posted by misscakes

What do you mean by ANC? I'm kinda new to all of this.

You can find an explanation of your Absolute Neutrophil Count (ANC) on the Marrowforums ANC: Absolute Neutrophil Count page.

Calculating your ANC gives you an estimate of your level of risk of infection. If you blood test results include the required information, you can use the Marrowforums ANC Calculator to compute your ANC. The higher your ANC, the better.

Where the form asks for WBC, fill in the WBC value from your lab results. Where the form asks for POLY, fill in the GRA% value from your lab results. Where the form asks for EOS, fill in the MID% value from your lab results. Finally, where the form asks for LYMPH, fill in the LYM% value from your lab results.

Here's how it comes out with the lab results you posted:

October 10:

WBC: 3.2
POLY: ?
EOS: ?
LYMPH: ?

Result: not enough information to compute your ANC

November 15:

WBC: 3.2
POLY: 34.4 percent
EOS: 8.0 percent
LYMPH: 57.7 percent

Result: ANC = 1101, which is "mild neutropenia" (small risk)

November 22:

WBC: 3.0
POLY: 25.3 percent
EOS: 8.6 percent
LYMPH: 66.1 percent

Result: ANC = 759, which is "moderate neutropenia" (moderate risk)

[donna j.]

Hi Neil,
I am confused as I have WBC 2, LY 78.9, MO 8.8, GR 12.3, LY# 1.6, MO# .2,GR# .2. How do these translate over to figure out ANC?

thanks,

Donna

[evansmom]

It looks like your ANC is 200 (GR 0.2) which is very neutropenic. You are at risk for infections and need to avoid crowds, sick people, places where mould can be found etc. This is IF I'm interpreting your labs correctly. Often labs will call the absolute neutrophil count (ANC) the granulocyte count, or GR/GRA for short.

[Neil Cuadra]

Originally Posted by donna j.

Hi Neil,
I am confused as I have WBC 2, LY 78.9, MO 8.8, GR 12.3, LY# 1.6, MO# .2,GR# .2. How do these translate over to figure out ANC?

thanks,

Donna

Donna,

Even though your lab numbers don't have % symbols I believe that LY 78.9, MO 8.8, GR 12.3 refers to percentages because they add up to 100.

With that assumption, the ANC Calculator gives me these results:

WBC 2
POLY: 12.3 percent
LYMPH: 78.9 percent
MONO: 8.8 percent

Result: ANC = 246

As evansmom says, that's in the most serious category: severe neutropenia. That's not a surprise given your low WBC and it shows that you should do whatever you can to avoid infections.

[donna j.]

Neil and Evansmom,

Thank you. I have been advised, no crowds, no stores, no restaurants, only healthy family for Thanksgiving. After the Vidaza round, I'll be getting a shot of Neulasta.

(Was hoping you might come up with a kinder-gentler evaluation)

Happy Thanksgiving to All.

Donna

[Lisa V]

Kimberly, I second what Nicole is saying. Find a doctor who will talk to you about ATG right away. Depending on your age and whether or not you have a sibling match, you may or may not be a candidate for a BMT, but even if you are, doing a transplant when you've just had a baby seems like a really bad idea to me. The recovery time is just too long, and the restrictions on what you could do during much of that time would not include caring for an infant or small child. You'd be the one needing a caregiver for anywhere from a few months to a year or two (depending on how things go).

ATG, while not exactly easy, is still a much less drastic process and a faster recovery. At the rate your counts are dropping, I see no reason to wait, unless there's something we don't know about. Even so, I can't believe the subject has never even come up! You definitely need a second opinion ASAP.

[Marlene]

You really do need a final diagnosis at this point. It's good you are keeping track of your blood counts. Get copies of your bone marrow biopsy results as well as all your other blood work. You should have a current results for some nutritional elements like B12, iron, folate, copper, b6, vitamin D3 and zinc. Make sure they check those levels. B12 needs to be above 500. There's been recent research finding that a low-normal B12 serum count, once restored, can correct the blood counts. You need more than one b12 shot a week though since it's not the standard approach most drs take. Pregnancy is hard on the body and can deplete nutrients.

There is a third option for treating Aplastic Anemia. It's high dose cytoxan. Dr. Brodsky at Johns Hopkins Hospital has had very good outcomes using this protocol for SAA when it's the first line of treatment. He will also treat with ATG/cylo as well as BMTs. Hopkins is utilizing a protocol to reduce graft vs host disease with BMTs. I would contact them for second opinion.

You need to hear about the options available so you can make an informed decision. If you go the BMT route, a sibling match is the best. If you don't and have to go with matched, unrelated donor, I would really look into the BMT program at Johns Hopkins.

[Robi1Knobi]

Hang in there Kimberly!! Life is different with bone marrow failure, but teaches you how to be strong & enjoy the little things. We have all been there & keeping hope/faith alive & doing things that make you happy will keep you going. Its so frustrating trusting your life in other's peoples hands, but somehow we are all still here ). Learn how to keep yourself healthy in the meantime...hugs, Linda