ATG treatment...any info would be great!!

[nixychall]

Hi all

i have been dianosed today with aplastic anemia and my sister is not the best match for a bone marrow transplant so therefore my specialist is thinking of rhe ATG treatment... was wondering if anyone could shed any light on this and try keep me positive so i am not paniking or thinking the worst! Any info would be fab :-) thank you xx

[Phil Page]

I just finished my round of ATG. Treated here at NIH in Bethesda as part of clinical trial. 4 straight days of 4 hour infusion. There are side effects; some people get them, some don't, and there are different levels of reactions in everyone that are just not predictable. It was an easy decision for me. It's the standard treatment with 60-70% success rate in lieu of a bone marrow transplant. Since you don't know how you'll react, find a facility that has treated this before and the staff knows the symptoms and how to treat them. Most importantly, do the treatment during the week, not on the weekend! Best places are medical schools/research hospitals. My side effects were mostly 'shake and bake', and usually delayed several hours after treatment, but a good facility is ready with medication/management of the side effects. There is also a risk of 'serum sickness' for a few days after you complete treatment for flu-like symptoms. You'll get through it!

[Karenish]

You would probably get more replies on the AA bit - but I had ATG - Rabbit - 3 years ago. Nothing major for me luckily, had flu like symptoms on the first evening which they managed with paracetomol and anti histamines. Then I got a rash starting on the top of the body and over a week moved down to my feet - quite funny to watch its progression out of my body!. Got jaw ached one day, so that i couldn't eat my cornflakes, most put out, but we got through that by laughing lots as for once in my life I had to shut up, a few aches and pains in shoulders. Then pee the colour of stewed tea, and that was it really - all manageable - take it at a daily pace - get lots of sleep - you will anyway with the anti histamine they give you between transfusions. I am now 3 years in from diagnosis, living life to the max, slowly weaning off cyclosporin, which comes with its own side effects, but again manageable. Now eating very healthily and drinking alcohol to a minimum (2 red wines my max). Lots of fresh air and drinking loads of water. xxxx

[BobbyJD]

If you do end up needing treatment just make sure it is done at a center by a Hemo Dr. who has experience with this disease. Administration of the medicine and monitoring of side effects is critical. Keep in mind Horse ATG + Cyclosporine has the best response rates, with a slow taper of cyclosporine months later.

If your not aware you can visit aamds.org for more info, it is very helpful. Also, Dr. Neil Young at the NIH in Maryland is one of the world's experts on this disease so fish around the internet for some of his articles.

Most important thing is to do your own research, ask lots of questions, take lots of notes and make sure your Doctor knows what he is doing.

[N dean]

Hi all
my 3 year old son has been with SAA, consultants are undecided between a 9/10 match or ATG, they have said that ATG should be started asap after diagnosis for the best result, but we are now 4 months down the line, how long after on set of symptoms and diagnosis did people start ATG and how has your treatment gone or is going. Thanks natalie

[Neil Cuadra]

Natalie,

My wife was diagnosed with aplastic anemia, after a routine blood test, even before she was aware that the symptoms of low blood counts were so serious. She started horse ATG immediately after being diagnosed; they didn't give us a choice about it. She had only a partial response to the ATG, but that was apparently because it was actually a case of myelodysplastic syndromes, not aplastic anemia. Her diagnosis was changed, so our further experience isn't relevant in your son's situation. And of course that was treatment for an adult.

I don't know reasons why ATG might be delayed after diagnosis. It doesn't strike me as a "watch and wait" situation. Were they waiting to complete the search for potential donors?

Since you mention a 9-of-10 match, I assume that your son doesn't have a matched sibling, and that you're taking about an unrelated donor. According to a presentation that I attended a few years ago by Dr. Gabrielle Meyers, this is a situation (a young patient with SAA and a potential donor) where either a bone marrow transplant or immune suppressive therapy (with horse ATG and cyclosporine) can be the appropriate treatment choice.

I know that having to decide between two treatment approaches can be scary, but the doctors have a lot of past patient data to rely on, so I'd give a lot of weight to their recommendations. The more you learn and the disease and its treatment, the more you'll be able to partner with the doctors and help your son.

I'm sorry you have to go through this. Nobody wants to see a child undergo treatment for a serious diease, but the statistics are very favorable for the youngest AA patients.

[Hopeful]

Hi Natalie,
I am sorry to read of your son's diagnosis. Everything I have read and heard agrees with Neil - once a diagnosis of SAA is confirmed, you should begin treatment ASAP. If the disease is immune mediated, the immune system will continue to attack/damage the cells and bone marrow until it is stopped.

Ideally treatment starts within a month of diagnosis. My diagnosis was delayed, so my treatment was 3-4 months after presentation. I only had a partial response but it has been durable.

Your son has youth on his side, which is a very good thing in the AA world. Just be sure that you are seeing an AA expert and that his disease is not genetic, as treatments will vary then. Please don't delay.

Wishing you both the best!

[Junior48]

Natalie,

Neil and Hopeful bring up good points. Youth is certainly a benefit. most importantly, you NEED to see a doctor that specializes and/or has experience in dealing with Aplastic Anemia and PNH. Treatments vary, and to the inexperienced Doctor, symptoms can present similarly. as you can see from Neil's story with MDS.

I wouldnt be too concerned about the timeline, i have not read or heard anything negative about waiting to administer. it is all situation dependent and watch and wait could be a viable method. Many people can live and function daily with very low counts. I don't know too much about transplant other than it has come a long way and it is usually more successful the younger you are. However, from speaking with my sister's Dr. and reading treatment options, it seems that most AA Doctors recommend ATG treatment before transplant.

My sister had horse ATG about 10 years ago. She got treated several months after diagnosis but her counts were continuing a downward trend so it was time. she only needed that one round and has been on cyclosporine since. That line of treatment seems to prove most effective according to the research.

[N dean]

Hi thanks all for your help it turned out that my son had changed cmv status so the donor was no longer compatible, we went ahead with atg on the 29th of march our consultants (at 2 different hospitals are both haematologists and have experience with aplastic) have said that they want to see him with anc of 0.5 and transfusion free by 3 month we arr now nearly 13 weeks post atg we have anc of 0.41 but we are still have transfusions every week so no change there they are dscussing the next steps my son across the 2 hospitals management meeting next week so we will see if we are going to transplant or another option .