When did "response" become the "R" word?

[Ryan Jay]

Hi everyone,

Well, it's been about 45 days since my ATG treatment and I've been doing well so far (knock on wood). Despite feeling like I had been electrocuted or hit in the head with a baseball bat for about a week after the treatment, I pulled out of it okay.

Things have been a cookin' on my CBCs, but my doctor has been unwilling to call it a "response" so far. I'm wondering if he's just very conservative or it's just too early.

Here are my recent counts over the last month:

WBCs:

1.4, 1.5, 1.6, 2.0, 2.2, 2.7 (Today! Yay!)

Platelets: (I used my nadirs and threw out the post transfusion figures which would put my counts in the mid to high 20s)

3000, 5000, 7000, 9,000, 12,000 (Today.)

ANCs:

320, 440, 500, 660, 680, 790, 945 (Today!!!! Yay!!!)

HGB/HCT: bobble around 7.8/22 with transfusions every week. Although I've gone two weeks since the last transfusion. So, the gaps between transfusions are widening.

Maybe I'm superstitious, but my counts started moving up as soon as I started wearing my "Bravery" bracelet.

Anyway, I just wanted to share this with you guys. Keep up the good fight!!!

Ryan

[Lisa V]

I think your doctor's just being cautious, Ryan. While your counts do look promising, they are far from definitive........ yet. All lines can and do fluctuate, and the amount of change you're seeing is not outside the realm of everyday fluctuations.

WBCs in particular can shoot up (or down) in response to a cold or infection, in fact we actually had the opposite problem when Ken had his second ATG. His WBC shot way up during treatment, and he felt sick as a dog, whereas his first one had gone fairly smoothly. I knew something was wrong, but his doctor interpreted the rise as a response, and the fever, vomiting and diarrhea as a serum reaction. It wasn't. It was a C. difficile infection. After they finally figured that out and cleared it up, his white count dropped back down again. I'm not saying you have an infection, just that this is the type of thing that can cloud interpretation. I wish his doc had looked at other possibilities before assuming it was a response. It was way too soon.

On the other hand, 45 days is not too soon, and the fact that both your WBCs and Plts are moving steadily upwards instead of up and down is a very good sign! Just keep in mind, though, that the clinical definition of "response" to ATG is transfusion independence. Hopefully you are moving in that direction, but until you get there, I can understand his reluctance to call it too soon.

[Ryan Jay]

I tend to be a bit of a numbers geek. I'm sure I'm driving my hematologist insane. Oh well!

They checked me for any infections a few days ago, and everything came out ok.

I'm just sooooooo eager to get my life back.

I hope everything goes well with your husband.

Ryan

[Lbrown]

Good luck with the counts Ryan, and I hope they continue to rise.

Do you know what your lymphocyte counts are?

Deb

[Ryan Jay]

They were right at 48. High normal according to the CBC chart.

My ANCs and platelets went up again today. Every week I'm getting fewer of those "black lines of death" with the "critically low" marked on the report.

[Lbrown]

Lymphocytes were 48? What was the unit of measure?

Ours is 10^9/L, with a normal range of 1.00 - 4.00

[Ryan Jay]

September was a rough month!

Last three labs:

10/6 10/7 10/11

WBC: 2.6 2.26 2.9

HGB 7.1 7.6 8.2

HCT 19 20 23

ANC 1001 1400 1420

PLT 25 29 32


I guess this ATG stuff does work! Knock on wood.

[Lbrown]

Excellent, it looks like all your numbers are improving. That must be a relief!

Deb

[dmscott65]

It's great to hear that you are responding so well. I was diagnosed on 9/30, started ATG on 10/3 and am a few weeks out and sitting here wondering "what's normal". I've had the whole gamut of side effects, feeling flu-like, can't sleep, meds playing games with all of my body. But I haven't had any transfusion since I left the hospital on 10/7 after the original ATG therapy. I spent a night in hospital getting fluids and trying to deal with exhaustion. Sleep aids made me feel worse, so I'm using prayer to get me thru the nights. I have follow-up with my hemotologist and CBCs tomorrow. This has all been so overwhelming. It's hard to believe I felt like a normal, healthy individual only a month and half ago.

[Ryan Jay]

Hang in there! Those first couple of weeks after ATG are just awful. It gets better after about a month or so. Watching television felt like hard work to me during that time. Have you started your steroid taper yet?

I am right at the two month point and all three lines are moving pretty well. My platelets and WBC started creeping up at 6 weeks, now my HGB is doing the same. I've only needed one tfx this month and in September I had 7PRBC and 5 Plt. So, I was way down for a while.

Be strong!

[dmscott65]

I went to first f-up with my hemotolgist on Tuesday (since hATG). My white and red counts were increasing and my platelets had increased from 17 to 30 over the prior 5 days. Dr said that was "encouraging" and he's pretty conservative. I did need an infusion of Magnesium Oxide. Dr. kept asking me if I was experiencing joint pain from the cyclosporine, which I hadn't.....until that night. Oh my.... knees went into orbit about 2:00 am. Felt pretty achy all the next day. Not sure if that was from the Magn or if doctor jinxed me. Felt better yesterday and today. Even drove myself the 60 mile round trip for labs today.

And, yes I did taper down from 70 to 50 mg of Prednisone on Monday. My sister told me that might have been why I was feeling pretty achy also. I drop to 30 this weekend. Not looking forward to that.

Are you having any issues with the MCV numbers? I understand that is the size of the red blood cells, which means the bigger they are the more they crowd out the platelets, WBCs. And, sometimes they mutate and burst. My number was coming down post ATG in the hospital and shortly after I got home. But, I was getting B12 injections in the hospital, too. Now, my MCV is on the rise every time I get labs....I'm concerned about that.

[Lbrown]

Tapering prednisone down to nothing caused me a lot of achey joints for a couple of days. I also had achey joints while on cyclosporine, I had to take a lot of advil.

Deb

[Hopeful]

Just a warning...I would discourage anyone from taking advil/motril/aleve/aspirin while on Cyclosporine because of the increased risk of renal toxicity. NSAIDs interact with Cyclosporine.

Also, I was told that an elevated MCV is common with AA, even through recovery and beyond. It is an indication that that the marrow is stressed. My MCV only started to come down a couple months ago and then recently shot back up when a virus knocked down all my counts. How high is your MCV, Donna?

[Ryan Jay]

"Are you having any issues with the MCV numbers?"

My MCVs have been normal for a while. They did come up a little right before ATG.

Don't panic about your whites during the taper; they will probably crash just like mine.

[Hawaii Bill]

Originally Posted by Hopeful

Just a warning...I would discourage anyone from taking advil/motril/aleve/aspirin while on Cyclosporine because of the increased risk of renal toxicity. NSAIDs interact with Cyclosporine.

Also, I was told that an elevated MCV is common with AA, even through recovery and beyond. It is an indication that that the marrow is stressed. My MCV only started to come down a couple months ago and then recently shot back up when a virus knocked down all my counts. How high is your MCV, Donna?

Not to mention the blood-thinning effect on the platelets I believe they also have.

[Lisa V]

Where did you get that information about NSAIDs, Hopeful? Do you have a source you could point me to?

[Hopeful]

My doctor originally warned me about NSAIDs. I check all potential medications with this website, as just about everything interacts with Cyclosporine:

http://www.drugs.com/drug-interactio...losporine.html

[dmscott65]

My doctor strictly warned me not to take any aspirin or ibuprofen/NSaids. Tylenol was the only over the counter pain med they approved due to the blood thinning effect and the risks with cyclosporine. I believe I have a good team of Drs here at WVU Hospitals. I'm very fortunate to have a BMT Center and team of doctors so close to me (less than 30 miles).

I asked the Doctor about my MCV....he's watching, but not worrying. It was 116 at one point before diagnosis in September. Got down near 102 during ATG and went up to 105 last week. Happy to say it was 104 today and my platelets are up another 7 pts to 37. White cells are holding their own and RBC only went down very slightly last couple of days. I suspect the RBC count and the MCV have a correlation that will show a more positive effect if MCV continues down

Had my best day since leaving hospital yesterday and felt pretty good today also. Singing his praises for Good Days!!!
Thanks for everyone's encouragement! Wishing best to all of you as well!

[dmscott65]

I had another follow-up with my hematologist yesterday. Was pleased that my platelets have reached 40 and WBC is 4.3. Hemaglobin was 8.8, but he said that was going to fluctuate for a while. I was very happy with the news that he said I can try to work and do more, based on when I felt strong enough. Well, I felt like superwoman when he said it. Then, I came home and seemed very tired that evening. I had taken my kids to dentist earlier in the day, which is more running than I've done in a month. And, I was noticing a little more fatigue this weekend, and sleeping is still a challenge. On top of all this I suffer from esophageal spasms, which my hematologist knows little about. I hadn't had these in 3-4 yrs, but the fatigue and stress on my body has brought them back. So, in addition to the steroids causing me sleep problems, I'm now suffering from these spasms that feel like a heart attack. Dr gave me medicine that I used to take, which is a calcium channel blocker. This drops my blood pressure and makes my heartbeat race. You can't sleep when your heart is beating 116 times a minute......ugh!!!! Just exhausted with all the things that are going on with this body. I just want to get back to normal.....
If I feel good for a few days and try to go out and do something, I end up back in bed the next day. I'm only a month out from ATG....I guess I am getting ahead of myself. Still happy with my counts and progress. Praying for more strength, energy and stamina!

[pvinod]

hi Ryan Jay

glad to hear that u got good recovery.

Could you please share your differential WBC count specially neutrophils and Lymphocytes in percentage before ATG , day1 of ATG and after 1 month of ATG.

please share I want to compare it with my daughter.

[Ryan Jay]

Okay,

Let me give you some ranges here. This is what I have from my notes.

Pre ATG: ATG, last day 1 month out NOW

WBC: 1.6-2.0 0.5 1.6 4.6!!!!!

ANC: 400-600 700(steroid effect) 300 2,500!!!!

I'll dig for the labs if you want more details. Remember, everyone's Aplastic Anemia is a little different.

Hope this helps,

Ryan

[pvinod]

Hi Ryan Jay,

congress for getting good response.

Could you please share your differential WBC count specially lymphocytes and nutrophils for before ATG, day 1 of ATG and after one month of ATG.

please share.