new member questions

[kellym]

hello, I'm new to this site, I have a 5 year old daughter only just diagnosed with aa in dec 2010, the doctor took a blood sample from my eldest child to see if she would be a match for bone marrow but it turns out she is not, so they are talking about atg treatment, I've looked all over the internet and seem to be going in circles.
my question is is atg a cure ?
does it include a long hospital stay?
I'm not seeing the doctor again until next week where I'm sure they will explain more
sorry if these questions have been asked elsewhere
thanks

[triumphe64]

This site can also be of great help.

http://www.aamds.org/aplastic/

[Ryan Jay]

Hi there,

I guess I can answer some of your questions.

The hospital stay for ATG can range from a week to two weeks or more depending on whether you have any side effects. I was in on a Monday and out the next Sunday. Not too sick, it just konked me out for the week. I felt WAY worse the next few weeks and then I came out of it.

As far as a cure...what is a cure? This is something that doctors talk about a lot. If you define cure as her counts going back to a normal/near normal range and her being able to live a normal life...then yes, ATG can be very effective.

No matter how successful your treatment, this is a disease that you will need to keep an eye on for the rest of your life. For me, it has become part of the routine of life. Wake up, go grocery shopping, take the trash out, go to the gym, check my cyclosporine trough at the hemotologist's office, walk the dog.

I would suggest you keep in contact with other patients though. This can be a very lonely world at times and there are some things that only other AA patients can help you with.

Ryan

[Lisa V]

The standard answer to the first question is that ATG is not a cure, only a BMT is a cure. That is pretty subjective, though. What they mean is that with ATG there's always the possibility of a relapse. That is true, but some people do not relapse, so for them, it might as well be a "cure". We've also heard from people who have relapsed after a transplant, so to my mind the distinction is not nearly as clear as the standard answer would suggest.

The bottom line is that ATG is a much less complicated procedure than a BMT, and the hospital stay and recovery time should be much shorter. Different medical providers seem to differ on how long they like to keep you in. My husband had no serum sickness issues, and he was in and out in less than a week the first time. On the other hand, I've heard of patients in other areas being held for several weeks just for observation, whether or not they had any adverse effects. I'd ask your doctor what the policy is at your hospital, Kelly.

Meanwhile, you might find it helpful to do a forum search for "ATG". You will find several descriptions of what the process entails and what to expect. Some people tolerate it better than others.

[kellym]

thankyou for the replys, it's great to know that people are managing this condition, I'm so glad to have found this site as it all seems very frightening at the moment

[Ryan Jay]

We've all been there. For me, the WORST was the first week after the diagnosis. I was in some dark places at times.

Once things switched from, "Oh my God, I have this horrible illness" over to fight mode, things got much better.

My advice to you is to go to the AAMDS website and download some of the webinars from Dr. Neil Young, Dr. Ron Paquette...and Dr. Margolis. They are very informative.

This can be beaten!

Ryan

[Neil Cuadra]

All patient families should get the free information packet from the AA&MDSIF.

[kellym]

thankyou for the info, we have to go for more tests next week and hopefully I will know where we go from there
we have had nearly 6wks of testing and it's the waiting and not knowing what's happening that's hard, from what I've read I will have to get used to that!
it's good to know other people are doing well

[Lisa V]

Yes, the waiting and the second-guessing is hard on everyone, especially at first. After a while it gets a little easier, especially when the counts start to creep up instead of down, but the idea that this is something you can be done with quickly and move on and forget about is something you'll probably have to let go of. This is your new reality, for better or for worse. That's not necessarily all a bad thing, even though it probably feels like the bottom has dropped out of your world. You can use that to connect with others who are going through the same thing, and to educate yourself and become an active participant in your daughter's treatment. Those are the things that helped me to cope during the early days, and I still value the sense of community I've found on forums like this one.

[kellym]

I am slowly get used to it, it amazing the things you get used to over time, my daughter is coping very well if you didn't know you'd think nothing was wrong with her, apart from pesky cough that won't go away!

[squirrellypoo]

Originally Posted by kellym

I am slowly get used to it, it amazing the things you get used to over time, my daughter is coping very well if you didn't know you'd think nothing was wrong with her, apart from pesky cough that won't go away!

Honestly, as someone who had AA and ATG as a 5 year old, let me tell you, it was way worse on my parents than it was on me! I didn't really understand what was going on, but things were new and I kept getting presents and lots of yummy applesauce (my mom figured out she could crush my pills into it and I wouldn't care!). Frankly, my only last effects from it was a superpower for needles!

I see you're in the UK - it might be an idea to see if your haematologist can send her BMB results down to Prof Marsh at Kings College Hospital in London for a second set of eyes on it. She's the UK's leading specialist and researcher in AA and she is WONDERFUL. She's also very interested in childhood AA and the longevity of ATG remission in patients, too.

[kellym]

she is enjoying all the presents and fuss too! ill look up that professor, that hospital is not far from me.
We saw our consultant yesterday and they are planning atg treatment in about four weeks, so im pleased something is getting started at last.

[Stacerph]

Kelly--

I'm sorry to hear about Ella's diagnosis. You didn't mention whether she has severe, moderate, or mild aplastic anemia; the difference is determined by counts at diagnosis. As someone mentioned, ATG can bring remission, sometimes for a long time. It isn't considered a cure.

The best ATG regimen according to Dr. Margolis at this time is the high dose 4 day treatment, rather than a lower dose 10-day regimen. Dr. Margolis at Children's Hospital of WI is VERY accessible, and he will talk with you, even if you are not his patient. I would recommend giving him a call. He is really amazing, and he will answer your questions.

Good luck. Feel free to email me if you would like to talk about ATG or BMT for AA.

Staci

[kellym]

hello, thanks for the reply, my doctor hasnt said if she has severe or moderate, shes only just been diagnosed and they have done another bone marrow aspirate this week to see if she has worsened.
Im guessing she has severe, she has platelets now 3/4 times every nine days and two blood tranfusions since dec 19.
In heself she is well and has lots of energy and is not tired, maybe as she is young its helping her cope better, i can hear her running about upstairs as i type lol
is the doctor you mentioned in the uk?

[kellym]

i forgot to add that her bone marrow cellularity is 20% is this severe?

[Hopeful]

Hi Kelly,

I would question your doctor as to why she wants to wait 4 weeks. There is a lot of evidence out there that prompt treatment (<21 or 27? days from diagnosis) leads to a more favorable prognosis. Perhaps this is just another reason to expediate the consult with another doctor!

Time is of the essence when dealing with a disease like aplastic anemia! I had about 2.5 months between diagnosis and treatment and things went downhill pretty fast towards the end of the wait.

Here is the criteria for severe aplastic anemia:

Any 2 of these in a hypocellular marrow (hers is):
* Absolute neutrophil count less than 500
* Platelets less than 20k
* Absolute reticulocyte count less than 60,000 /uL

I wish you and Ella the best! Continue to be strong and advocate for your daughter!

[Jen B]

Hi Kelly,
My son was 3-1/2 when he was diagnosed in December of 2008. His big brother wasn't a match for him either. We went through horse ATG and he had a partial response - enough to keep him out of the hospital for long chunks of time. Some patients go for a second round of rabbit ATG if the horse doesn't help, but that is being discussed whether or not the second round or straight to transplant is a better option.

This disease requires so much waiting and patience - of which I have very little. Hope for remission with the ATG, but put her name on the list to look for a match in case transplant is the way you have to go. You don't want to have them start looking when you are in need at that moment.

Feel free to e-mail me if you want to chat.

[kellym]

hello, thankyou for the messages, you are all very kind. We are still waiting to find out when our treatment is going to start, im seeing the consultant next week and he will tell us, i just want to start getting on with it now, i think he has left us waiting as he wanted to see if she had a virus and if her counts would improve by themselves before starting treatment, they have stayed the same though neither any worse or better.
Is it usual for neutrophils to go up and down? as hers is now at 0.4 where a few weeks ago it was 0.1
i wish you all good health!

[kellym]

We now know it's severe aa after last weeks tests and are going to be admitted to hospital in two weeks to begin ATg treatment, so fingers crossed it works, I'm am worried about the serum sickness I've been reading about though, but pleased treatment will start at last, it's been a long two months!

[Hopeful]

That is good news that they are moving forward with the treatment.

Try not to get too worked up about the serum sickness. Trust me, it will be harder for you than for her! Just remember that for every horror story that you read, there is another person that will have breezed through it.

Try to focus your nervous energy through the hospitalization on things that you have more control over. For example, ensure that all nurses/doctors/visitors are keeping things as sterile as possible. Her neutrophils will go way down before they go back up and the risk of infection is serious. Be vigilant that proper protocol is being followed for sterilization of her PICC line before things are injected into it. Also double check all drugs administered and their dosage.

I wish you both the best!

[kellym]

hello hopefull, thankyou for the advice i will make sure everyone is keeping things sterile, she is being treated in a cancer hospital and it is the cleanest hospital ive seen here (im in the uk) and has amazing childrens wards which im pleased about as our local hospital where we have transfusions is not the nicest place and i wouldnt want to spend a lot of time there!

ill try not to worry about the sickness i have read some horror stories though, but you cant help but read them, i find it helps to know all i can about this illness...still cant quite belive its happened.

all the best

[Jen B]

Ethan got through horse ATG pretty well, just a few headaches and after the fact, some transient rashes. Everyone is different and she may have a breeze of it! Keep positive...

[Lisa V]

Just about everyone I've heard from has had some initial flu-like symptoms (chills, fever, aches) during the first few hours of infusion, but that is not serum sickness, so don't be alarmed by that. It will pass quickly, and with any luck it should be smooth sailing after that.

[kellym]

Thankyou for the replys, we only have a few more days until we go in, I was feeling really positive, but now feel terrified by it all, I just pray ellas not going to too unwell with it all we have managed to keep her well the last few months. Hope you are all keeping well

[Ryan Jay]

Try not to bite off more than you can chew. Focus on day to day successes and not, "Oh my God, what if?" stuff.

Every day I would write about something that went well in a log book.. That seemed to work well.

You are going to be in really good hands through this process. ATG is usually administered by the cream of the crop.

Anything that you need help with, you can always come here and ask.

Ryan