To be nervous or not to be. That is my Q.

[sv0210]

Hi,

My name is Scott, and I was diagnosed with SAA in January 2011. I am in the Army and still in the Army somehow. Just a little background on me. I was medivacd from Fort Wainwright in Fairbanks, Alaska. I was sent to the University of Washington. After I arrived I was given a BMB which confirmed SAA. I went through ATG(horse) and I was put on cyclosporine. After about 30 days I was finally moved to Fort Lewis where I was transferred to the WTU(Warrior Transition Unit) I was monitored from there on my progress as I struggled to deal with my symptoms and Army life. In May I was released from the WTU with a partial remission and stayed on the Cyclosporine till August 2011. I was tapered pretty quick.

Since being off the medicine the Army deemed me fit for duty and sent me to Fort Irwin, California on December 19th, 2011. I have been having my blood counts monitored slightly and such.

What I am worried about is a possible relapse soon. Which is why I write this, and wondering what others think or noticed about a relapse they have had.

Right now my counts are good but seem to be on this rollercoaster....

When I first got here I had a RBC=4.9,WBC=6.8, PLAT=185 (Dec 27th, 2011)

Here are my following blood draws.
Jan 3- RBC=5.39, WBC=6.9, PLAT=169.7
Jan 19-RBC=5.21, WBC=6.8, PLAT=176.1
Feb 3-RBC=5.36, WBC=7, PLAT=143.1
Feb 11-RBC=5.40, WBC=7.2, PLAT=163.8

I expressed to the doctors how I want to monitor this and I feel like they either don't care or don't see it as important as I do.

I have been sick since I got here, and the reason I went in on the 3rd and 11th is because I haven't been doing anything at work to give myself random bruises so I wanted that checked.

The problem I am seeing is that my platelet's are on what I feel is like a roller coaster...They keep falling and jumping back up but never reaching the status of where they were on the 19th of december and on every occasion it feels to me like they go down and then when they go back up it is still decreasing in number as it goes 185 to 169 to 176 to 143 to 163...

So I am worried if anyone who has relasped saw this type of roller coaster with there platelets before relapsing. I want to be proactive about this even if these military doctor's don't want to be. I feel like it's going to continue especially with how life in the army is.

What's next a 163 to 138 to 154 to 120...etc..The main reason I ask is a friend of mine who relapsed said his counts were fine when all of a sudden one of his counts started to drop and then another and then another. I feel like I am just nervous and looking over my shoulder everyday now, wondering if this is my count starting to drop....=/

[Brendan]

Hi Scott!

I can't answer your question about the behavior of counts before relapse. I've had AA longer than you, but I've never successfully completed a Cyclosporine taper (I'm in year 7 of CyA therapy). And your counts destroy mine.. I could go back to my knife juggling if I had your platelets.

What I can tell you is that uncertainty reigns supreme with AA. Even with my super-long therapy, I can't tell you that I'm any more secure in my treatment than you were with your fast taper. I could relapse tomorrow, while you could go sans-relapse for the rest of your years. Such is the nature of our rare disorder. Certainly you have to take control of your treatment, and follow what the best practices are... but at some point you have to just come to terms with the uncertainty.

Anyway, that's enough philosophizing from me. I'm sure that other members whose situations are closer to yours will reply with more specifics than I have.

Take care,

Brendan

[sv0210]

Yeah, they said I had a very good response to the ATG. Higher than average, but those were some dark day's as well. I just remember reading a lot of things about fast tapers and such, and I start to get worried. My counts only recently as of November got above the 100 mark.

I just feel like if I don't keep the right eye on it. Then I cannot be proactive about it. I've only been off the cyclo since August and well that is still concerning to me. The cancer center of UofM wanted me to repeat ATG before I left to go to Fort Irwin but the Army said no. They believed that if I didn't I would see a possible relapse within two years. So ever since they told me that I can't stop thinking about it.

Guess it doesn't help with the stress of the infantry that these guys put on me by calling me a shitbag and such for having AA and not being able to perform at their level.

[Sally C]

Hi Scott,
I just wanted to tell you how sorry I am that the Army is not being more helpful or understanding.
I volunteer at the McGuire Medical Center in Richmond, Va. It's a shame you don't live near it as they seem to really take good care of their patients and the many Vets I have met seem very supportive of each other.
God Bless you in your fight against this disease and thank you so much for your service to our country.
Take good care and keep you chin up and your head held high.
Best wishes,
Sally
p.s. And you are not a shitbag. They wouldn't be able to do any better than you are doing were they faced with the same disease. Look upward for support and you will get it through God's Grace.

[Dick S]

Am I missing something here? Your whites and reds are well within normal range and your platelets are only slightly low. My experience with platelets is, you can get three different counts on three consecutive days up or down. When my platelets get above 80, I'm on cloud nine and I've as yet to get any treatment of any kind.
Oh, and I'm with the VA.

[sv0210]

First of all Dick your name goes with your attitude. I have only had these counts at this level since November. Secondly your with the VA? That means what to me as Active Duty? Thirdly I was asking a question, which all you had to say was I am not sure.

It's just from me wondering about things I have read. Where I read a percentage of people will get really high count's and then one will start steadily drop and then the others will as well. So I was curious if anyone could respond if that had happened to them.

You don't need to be an ass to me for wanting to be worried about that. This disease ruined my Military career.

[Karenish]

All I know is that I would be so chuffed if I had those counts to be sure! however, all counts fluctuate even if you do not have AA, it is the way of the marrow (sound like darth vader there) I would worry i your counts show a trend downwards, but up and down is quite normal.
Signing off now wondering if my hb at 8.5 and my plates at 25 will ever get to where yours are! good luck

[wwd]

First of all, I do not think Dick was trying to be an ass. I have read his posts for several years and that is not his style. My son had similar platelets (the rest of yours are better) counts as you have about the same time. As soon as he was off cyco. the platelets did drop into the 120 to 140 range and have remianed there for 4 years. He is now in college and doing well.

I think I can understand what you are going through. You want to fight and defeat this thing, but you you cannot. All you can do is work to stay in shape both physically and mentally and deal with it as it comes. I know as a parent, that is easier said than done.

Hope this helps.
WWD

[Dick S]

Originally Posted by sv0210

First of all Dick your name goes with your attitude. This disease ruined my Military career.

First off Scott, re-read Brendan's and then read Karenish and wwd's post, I meant nothing. To set the record straight, I don't have an attitude, but apparently you do. As a newbie, I think you have a lot of gall, you want help, but then lash out at people and at what you get if you don't agree with it. I realize you are scared and angry at your disease, we all are and it's not pretty to live with, trust me we know. Listen to your doctors and stop trying to self analyze. I've been on here six years and watched others much much much worse off than you suffer and DIE here.
Check you attitude at the door, read some of the old post of what people have lived through and we've lost and then please come back and we may be able to help you if you really want it.

[evansmom]

I agree sv0210,

Everyone here has the same fears and concerns you do. We are a group of patients, loved ones and caregivers that completely understand what you're going through (in terms of the AA treatment/response/risk of relapse) and we totally get your worry. No one on here bashes another. If a reply isn't coming across genuine, we give the benefit of the doubt and the member always clarifies the misunderstanding and proves their intentions were good. You assuming otherwise is uncalled for.

Now, as you are understanding, AA and it's response to treatment is very unpredictable. As it stands right now, with you being completely off cyclosporin, your counts are great and your platelets are stable at the low end of normal. Platelets can be very finicky and lots of day to day things can affect their numbers, like simple cold viruses, etc.

My biggest concern is the fact that you are still recovering from a life-threatening disease that is in remmission and you're back in full Army duty, and to make matters worse, you're receiving no respect at that.

If you were my son, together we'd find a way to get you permanently released from duty, citing the ongoing issues with dealing with the fall-out from your ongoing battle with aplastic anemia and the toll it has taken on your mental health (constant worry, fear of relapse, concern for lack of ongoing routine follw-up, etc.).

Many people are able to successfully return to their full-time employment or schooling but what you do for a living is extreme and not the least bit condusive to full recovery, both physically and mentally.

None of us know what tomorrow will bring. Our time on this earth is finite. You can't go through life worried about the 'what-ifs', but unfortunately having AA puts you in a category of potentially decreased life expectancy. Maybe you should come home, get the routine medical care you need and derserve, which will undoubtedly put you mind to at least some ease.

Just my opinion, best wishes,

[dfantle]

Hi Scott, first of all im so sorry you got sick. You are young and this is not something you likely ever thought you'd have to deal with, which is likely the same for anyone who has been diagnosed wih a serious illness. As Nicole said, you may be scared, or maybe even angry. Anything you are feeling is totally normal.

From looking at your counts and the lab dates, it looks to me like you are having labs every 1-2 weeks which is definitely often enough. With your stability, even some prominent clinics may not be checking your blood counts this frequently.

As another others on the site have said, your blood counts will vary every day, but with the varying counts you show it appears you are completely stable. And, as others have said, if you get sick, even with a simple cold virus, your counts will vary a bit more and even drop some, which is 100% normal even for healthy people. They should then rebound after the illness or virus has passed, however.

However, if you're concerned your current team is not taking this seriously enough, you may want to contact those at the University of Washington who treated you last year. If you do not have their email addresses or a phone number, I am a patient at the Seattle Cancer Care Alliance, which is part of the UW and may be able to help you find an email address/phone # if you have a name of who treated you.

Your platelet counts look high enough that any bruising should be no more than normal, for the most part. However after what you've been thru you may now be more sensitive to this than you were in the past.

The reason you're still not back to 100% is because it will take your body a good amount of time to completely heal from what you've been through and you are likely still ramping up with the heavy fitness regime you are likely in. It's truly not for us to say if you remaining in the Army is the right thing. I would rely on the team who treated you at the UW to share their thoughts on this. It does appear that you've remained stable since you've been back in the Army.

I would encourage you to be as healthy as you can with anything you put in your body, food, alcohol... and I would also ask the team who treated you about this.

Best of luck,

[mscrzy1]

Hello!

I'm so sorry to hear that you are stressed out so much by this and partly due to the drs. telling you that you will probably relapse. That was actually pretty sad of them to do that. I would say that your counts look great to me. I know your platelets are fluctuating, but the fluctuation is minimal and you are still at a great level. Honestly, I think they are running your cbc's too close together. I would try once a month. My counts are 10.1 hemo, 2.5 WBC, and 69 platelets and they are only checking mine every 3 months. I'm 15 years post ATG, though. Honestly, it's easier to actually see what's up and not catching the normal ebs and flows of my counts driving me insane. With my drop in counts these last couple of years, I've come to the conclusion that you really need to try your best to relax about the relapse. I know it's hard, but stressing about it will not help. Try your hardest to wake up and enjoy the fact that today you don't have to waste 4 hours of your day getting a blood transfusion! Enjoy the fact that you can climb that flight of stairs without practically collapsing. It's the small little triumphs that make life enjoyable. Go enjoy it! Nobody knows what the future holds, but we know what today holds. Treasure it. Also, try to remember that anger and resentment do nothing but poison your healing. Good luck to you.

[KimO]

I just wanted to provide some encouragement that with your great response to ATG you would be very likely to be able to achieve remission should a relapse happen at some point in the future. While there is a fairly significant number of those that respond to ATG that do relapse, there is a greater number that do not so the odds are in your favor. Finally, many who relapse are able to recover counts with cyclosporine alone, which was the case for my daughter.

I would also encourage you that the feeling of vulnerability and waiting for the other shoe to drop will most likely diminish over time. In our case, the relapse actually had the benefit of causing us to face that fear and overcome it.

[Lisa V]

Originally Posted by sv0210

The cancer center of UofM wanted me to repeat ATG before I left to go to Fort Irwin but the Army said no. They believed that if I didn't I would see a possible relapse within two years. So ever since they told me that I can't stop thinking about it.

I can see how a remark like that would get inside your head and make you worry, but I'm wondering why they think that. Since you had such a good response the first time, I don't understand why they'd want you to repeat it. I've never heard that sort of thinking before. If I were in your shoes I'd contact them and find out why they said that. Maybe that will help ease your anxiety somewhat.

I have to say, I'd be nervous about being on active duty this soon after treatment too, and also want to check it often, but I'm not seeing anything in your counts that signal a relapse. As Karenish and others have said, up and down fluctuations are normal. It's when they are consistantly down every time that you may have something to worry about.