ATg response

[kellym]

My daughter is now 6 wks post ATg and there had been no rise in any of her counts, she's had to have more tranfusions than before the ATg, has anyone else experienced this?

[Ryan Jay]

I had my ATG in early August of 2010 and my WORST week was in late September. Then things started to hold, then rise. On September, 20th I remember spiking a pen on the floor and slamming a book against the wall in the infusion room after I got another round of disastrous labs (real mature I know) Then they plugged everything but the kitchen sink into my PICC line and I just kept on going. I've been there and I know how frustrating it is.

[Lisa V]

Yes. It took us 10 weeks to start to see a response the first time. It's taken others longer. I know it's hard to wait, but this is nothing unusual. If you haven't seen any improvement at 6 months, then it might be time for Plan B.

[kellym]

Thankyou for the encouragement, it is so fustrating and every blood count she has i keep thinking the ATg has not worked. I can understand you throwing things!

[Karenish]

Kelly,
Don't panic! i had rabbit about the same time as your daughter...March 2011, she will have had more transfusions because the ALG destroys platelets on a daily basis until it has left the system totally which can be up to 3 weeks after infusion.
Then the only places where your blood can be made is the shoulders, chest, skull and hips (flat bones) so there is an awful lot of making to do. Counts dont normally significantly change until about 3 months, and you won't see a marked change until about 6 months...we are all different so some people respond quicker than others...all mine are still low, but HB keeps fluctuating from 8 - 10, but I know that this could all change next week! its very very hard i know, but keep the faith, get your daughter to imagine how its going to be when she gets better, get her to plan the future, I have found that this helps!
There is also an aplastic anemia site on facebook and you can see from peoples posts there that this is a personal thing, one lady has taken one and half years, but guess what, she is in FULL remission!
I have today been out to lunch with friends, we sat outside so I kept away from bug ridden humans (grin) so try and normalise your daughters life, make it busy and then the "waiting" isn't so bad. But yes it is frustrating because we pin everything on those counts rising. Remember...even well people have rises and falls in blood counts.
I had another 2 bags of platelets yesterday (monday) they apparently take much longer to be produced by our marrow. xxxxxx Karen

[Karenish]

Just to update you, I am now at the end of week 3 and still no signs of climbing...however white blood count up to 1.5 so I must have made that myself as they don't transfuse these! so something in the marrow is working. So hopefully Kelly this will put your mind at rest if your daughter is still in the same boat xxx Karen

[kellym]

Hello, karenish I've not been near a laptop for a while so couldn't reply. I hope you are well and have seen a improvement in your counts. Ella is now 10 weeks post ATg and nothing had improved at all, she still having just as many tranfusions and with each week that passes I lose faith, this really is a horrible disease, god bless all who are fighting it xxx

[Karenish]

same here, although I am lasting slightly longer.....I sobbed and sobbed the other day and consultant said everyone is different and they do not consider that it hasn't worked until 6 mnths, unfortunately it is human to measure our success on others, but we aren't the same.
I feel well, and they go on this, I am off for another transfusion today, but the platelets have lasted 3 days longer than they normally do, so perhaps my marrow is making some, but not enough to sustain me.......yet. I know its hard, believe me I really really do know! but stay optimistic, we can't rush these wonderful machines of ours.... hang on in there xxx has your daughter got any white cells yet?

[kellym]

Hi karenish, sorry to hear your counts are not moving up yet, ellas don't seem to be either, but we must all keep hope.
Ellas whites fluctuate between 1.0 and 3.0 they are all up and down, it's the same with her neutrophils they don't get higher than 0.5 they are up and down.
She has platelets roughly every 9 days the time between hasn't got any longer, blood transfusions are around every 4 weeks and she dd go 15 days longer last time so maybe it's a sign..who knows. Do you still have frequent transfusions?
She's having another bone marrow aspirate in the middle of June so I'll know more of what's going on then, but it's hard not to lose hope with this ATg
It could be on to bone marrow transplant next, which I'd hoped to avoid.
Hope you have some good news soon, Kelly xxx

[Karenish]

my whites are fairly static at 1.5 currently, but remember these only last 24 hours a day, so we are making them ourselves. HB is around 8 for me, and doesn't appear to drop below this, I can get by on this one believe it or not, I just take it easy, but opted for a blood transfusion this week as it had been ordered already! My neuts are currently at .97 so they have increased a tiny weeny bit. I am seeing my consultant tomorrow so will have a clearer idea then at what is going on. I still feel well so hope that is a good sign, maybe we are just slow responders? no doubt they will want to take a look at my marrow in June too, yeuch, I am incredibly tender around that area thanks to the cyclosporin - something must be working because we wouldn't have any counts at all if it wasn't! Ella sounds just like me, I was getting plates every week but these seem to be lasting longer and blood was always 3 weeks but this time i went for 4....lets keep positive thinking! xxxx

[Jo P]

Hi KellyM,
My son is 7 and had ATG on 29/12/2010. Although he has only had a partial response at this stage, he has gone 16 weeks without a transfusion. He needed more transfusions during and just after the ATG treatment which our Doctor explained was normal.

[kellym]

It's been exactly three months today since Ella finished atg and she had her bloods done today and they are all going down still.
I feel gutted today and like she's never going to get well, I'm having a bad day of it, aside from that ella is still running around with a hb of 6.9! She carries on as normal.. Thankfully her age must be helping!
I'm starting to feel like just getting on with a transplant now as it's feels inevitable unless a miracle occurs but I just don't think the atg is going to work now.

[Susy]

KellyM
I can absolutely relate to the feelings your having right now. You wait with such anticipation of your numbers/counts coming back - only to see them not improving. The lump in your throat and tears to your eyes are almost unbearable.
It took 3 months of my numbers continually trending down, before they became stable. Stable is by no means close to what 'normal' numbers would be (hemoglobin 8.4 - platletes 44), but stable has meant to me - no blood transfusions for 17 weeks.
I would continually shake my head when the doctor's kept telling me to be patient, that I shouldn't expect any results until 3 - 4 months, and yes, it might take up to 9+ months...I am now starting to believe, and I am not putting all of my emotions into my blood results.
Each day, I go by how I am feeling better, and that I have achieved another day without a transfusion.
Holding out hope for your daughter.

[kellym]

Hi Susy, thankyou for taking the time to write, it really means a lot hear from other people and you described to a tee exactly how I'm feeling, each bloodcount is heart wrenching, especially when she asks me if she's getting well soon.
I'm glad you've managed to be tranfusion free and hope your counts continue to rise for you and all the people on here.
I'm praying for a miracle and more patience!
Best wishes, Kelly

[mscrzy1]

I remember those days all too well. I would come in and the dr. would ask how I felt (knowing full well just by looking at me), but I'd always answer that I felt great! I'd tell him that my counts were definitely up in the hopes that I would be right only to find that once again I'd be hooked up for more blood and more platelets. I received my ATG in March of 1996. I was transfusion dependant until August of 1997...a whole year and a half after my ATG. I know that still doesn't change the hopelessness and defeat you can feel when you're in the thick of it. I'll be adding you and your daughter to my prayer list.

[Karenish]

Originally Posted by kellym

Hi Susy, thankyou for taking the time to write, it really means a lot hear from other people and you described to a tee exactly how I'm feeling, each bloodcount is heart wrenching, especially when she asks me if she's getting well soon.
I'm glad you've managed to be tranfusion free and hope your counts continue to rise for you and all the people on here.
I'm praying for a miracle and more patience!
Best wishes, Kelly

Kelly, honestly you are not alone - I went to the consultant last Thursday, he said that my counts were not doing anything abnormal, it is still too early to say if the ALG has worked and was quite cheery about it all. I came away feeling more positive, as he said I can return to work (I am an occupational therapist) which convinced me that I must be getting better. Then Friday the little red dots appeared again with avengeance!! I was so upset, I bawled down the phone to the chemo unit that i needed another blood test...so they did. Plates down to 11, HB 8 and the others just disappeared out of my mind as I was so upset. Monday I was back in having one bag of plates and two bags of blood, you almost feel like giving up, but then the little voice in your head argues with you. All the girls in the chemo unit said that its a rollercoaster and they aint kidding. I am normally an incredibly positive person and believe I have a little guardian angel who has looked after me through my life, but now I feel a little abandoned and out of control of the situation. I pray every day for a positive response, I know that they won't give up on me, but I know that the thought of another alg is draining....I am planning my own wedding for next year, we are looking for a house and for those little moments I forget I am not well. I am hoping that by returning to work I won't become so obsessed with these counts, but I just want to hear the words "its working". Hold on in there, sob when you need to, they have prescribed me some lorazapam to help, and I find that one of these when it really gets tough helps. Thinking of you, and holding on to all the supportive words of encouragement out there that we are not alone xxxx

[Snuuze]

I'm going to jump into the ATG Blues discussion. Mine was 2 weeks ago, so I have a long way to go until I feel better. Knowing that doesn't always mean much, though. Right now I don't really care much what the counts are (low), I'd just like to be able to walk across the room without being out of breath. Suddenly, the days prior to ATG look pretty good - a new standard for "normal" has been set! But one day at a time we can get through this and one day we'll be on the other side of the "River of Hope".

[Lori. K]

When I was diagnosed in 99' with my blood disorder I tried the horse serum atg in Aug of 99' the treatment worked right away with me as soon as I started the horse serum, my red blood counts stayed in the 10s and 11s for 2 in a half months and I didn't need a transfusion... after the 2 1/2 months I started needing blood transfusions every 4 weeks again. so far to this day that was the only treatment that actually worked on me. A couple years later I did the rabbit serum that didn't do anything for me! I ended getting serum sickness from it....
Now I'm seeing a bone marrow doctor and he wants to do a bone marrow biopsy on me since its been 6 years since I last got one and he's checking to see if anythings changed, since then if it hasn't then he wants me to give the horse serum a try again... I'm hoping it work for good! And ill be cured.. but since its been years I'm afraid maybe ill develop serum sickness with this or maybe it will make me have to get blood transfusions less than 4 weeks..... I guess you don't know until you try?
Right now I'm willing to try anything.. I'm sick and tired of being sick and tired! Lol

[edithr]

I'm also joining the ATG Blues group. It's been 8 weeks, Eric goes 2-3 times a week for blood draws. I should count my blessings as he is transfusion free, but when oh when will the counts go up. And Tuesday, they went down! I almost cried. Are there any stats that give usual response time? I know everybody's different, but if most people don't begin to respond before at least 3 months then I'll at least know he's typical.

[Karenish]

I joined in the webinar the other evening given by some top professor of haematology and I asked what is the average response time.... he said that they don't expect to see anything until months 3 - 6 after atg!!! Those who respond earlier are just lucky!!!
So I then asked should I be disappointed that I had mine in March and still no real signs of response.... he replied "not at all, you may not see anything substantial until the 5th month" He then went on to say that most consultants will review you at 6 months and if there has been very little or no response they will suggest a second atg, but that sometimes people start to respond at month 6 and they use a watch and wait.... I do know of someone who this happened to and they are now in full remission! Believe me, I know how awful this is, but I am not going to say it hasn't worked until my consultant says. Another blood test tomorrow...I feel very well, but still have some little red blood spots on the back of my hands so I know that my plates are low...keep the faith! xx

[kellym]

Hi, karenish
That's sounds very encouraging! Ellas coming up to the four month mark now and I'll admit to losing hope but maybe it will work.
She's got a bone marrow aspirate soon so that will give more of a idea as to what's going on.
We are off for some more platelets later, she's needing them every 8 days
I think it will be blood again in the next few days as her hb is 6.5 now and she's looks so pale but is still running about, children are amazing! I'm glad your keeping well, and thankyou I feel more positive after reading your message xx

[Lisa V]

Karenish, I wish our doctor had told us what that hematologist told you. Ours started pushing for a second ATG after one month, saying that "we should be seeing some indication by now". That is absolutely untrue, and fortunately by that time I had contacted the AA&MDSIF and found enough other patients online who were all telling me 3 to 6 months, so we opted to hold off on retreatment. In Ken's case, we started to see a response at 10 weeks. When I talked to the doc later about the 3-6 month conventional wisdom, he said "Yes, I know, but if you give a second ATG within a month of the first one you can get a cummulative effect from the two treatments. If you wait any longer, you lose that." I can see now where he was coming from, but we didn't know that at the time, and one month is just too soon to second guess what's going to happen.

That's why forums such as this one are so important. If you listen only to what the doctor is telling you and don't do your own research, you may not be getting the whole picture or the reasoning behind it. They may have their own agenda or be applying principles from some other disorder they are more familiar with. AA is not only a rare disorder, it's not even a single disease-- more like a cluster of closely related disorders with similar symptoms. So what works for one person may not work for another, and one person's timetable may differ from another's. Once you get to know your own (or your child's or spouse's) patterns of response, you become your own best expert and advocate. Until then, however, it can be a frustrating and frightening experience. Waiting is hard, but it's the name of the game for AA. I didn't understand what they meant when they told me that at first. Now I do.

Hang in there!

[Karenish]

Dear all,
the webinar was advertised by the mds aa people whose reference I am sure I got from here!!! I am based in the UK so there is no way I can attend those conferences they hold over in America, but this one was online and was available to those all around the world!
Someone on here has already mentioned his name and also attended the conference in person and have posted a link to his slides. If I find the post I will try and post the link!
The beauty of this webinar was that you could type your question and press send, then a chairperson would read it out for you, just stating your name and where you were from. Found it... http://forums.marrowforums.org/showthread.php?t=2150 its under Dr. Scheinberg cool dude or something similar!
xxx

[Gloria J]

Hello All,

Just wanted to chime in with my personal experience with Horse ATg - Months 1 -3 - transfusions every two weeks or so, Months 4 - 6 - every two and a half weeks, Months 7 - 9 - every month (big improvement!), but by Months 9 - 12 - every 8 weeks! My last transfusion was in the fifteenth month post-ATg.

Certainly took long enough! but that was two years ago now, and my counts have stayed pretty constant - Hgb averaging 10.7, WBC in the 4s and 5s, and platelets averaging 105K - not incredible counts, but certainly respectable.

I was given a choice at one year to repeat ATg, or wait, and I'm glad I did. My bone marrow finally decided to kick in, and do its thing. Now if I could just get rid of the PNH.... just started Soliris last week... but that's another story.

Just want to encourage you to be patient, and give your bone marrow time to recover, and work the way it should. I know how downright depressing it is to have low counts, and to know on the way to the lab they will be low, because you feel lousy, and have all the symptoms - the pounding in your ears, the debilitating fatigue, the headaches.... But it WILL get better - trust your body.

By the way, Dr. Scheinberg is 'one cool dude' who knows his stuff!

[julestheo]

Hi
I had my ATG (rabbit) Aug 10 and was told at the time that it is a very long road with AA it was not glammed up in any way I was also told that they would expect to see some signs between 3-6 months post treatment and if not another round of ATG would be offerred they were upfront with me, I was one of the lucky ones who has responded well to treatment I had alot of problems during the ATG but I have been transfusion free for 8 months still taking cyclosporine and in those couple of months after treatment when I was receiving transfusions it was worrying and frustrating praying for a sign but I kept my chin up and rememberred this is how they said it would be no quick fix a long road so I went along with it and kept as positive as is possible and had faith after all that is all we can do. I do believe it we have enough to deal with without putting pressure on ourselves and I think this can do more harm than good to a healing body, please have faith, god bless everyone going through this horribble illness