ATG/Cyclosporine starts today

[edithr]

Wish my son luck, tx starts this morning. They did the horse allergy test thing last night, no problems.

The docs paint such a rosy picture - they say side effects are no big deal, he'll be back to school a few days after he gets out of the hospital, his summer camp job will be no problem. And, most importantly, they tell me that when this year is up there is an 80% chance that we will never see them again.

Please tell me the truth. Is is going to be a cake walk?

[Neil Cuadra]

Edith,

The odds are in your son's favor. Although I'd be surprised if he had absolutely no side effects (other than getting better!) any side effects are likely to be temporary and manageable. Teenagers respond well to treatment so I think his doctor has excellent reasons to paint such an optimistic picture.

Good luck! Please tell us how it goes.

[Ryan Jay]

As much as I don't like to (respectfully) disagree with the owner of this forum, I wouldn't have been as optimistic if I were those doctors.

Not for his long-term prognosis but his ability to return to school so soon. Summer camp, maybe?

My sense with ATG is that you may not see a lot of symptoms on paper, but you still feel really blahhhh for a while.

According to my doctors, I tolerated the treatment "well." Easy for them to say, they didn't watch me do a face plant into my Chicken Marsala because I barely had the strength to sit up straight at the table. After about 4 months, I was hiking up mountains in full remission.

But again, the teenager factor could help him bounce back.

I guess my point is, don't get down if he has a bit of a rough time with it.

[edithr]

Whew, day one is over. About 2 hours into the tx he got hives. Like, suddenly. One minute he was fine then then next, boom. On his face and arms. So they discontinued the tx, gave him more bendadryl and then restarted the IV about 3 hours later at half the drip rate. The only thing after that was he had some heart palpitations about an hour after the tx was done.

Does that sound right?

Ryan - I too would be shocked if he went to school next Monday and was fine, but like you said he's got that teenager thing in his favor.

[Stacerph]

When my son had his ATG, he got hives on the first day, and then not again for the remaining 3 days. He felt pretty good afterwards, and he returned to school about a week after he was home. He was 6.

[edithr]

Thats great! Makes me feel very hopeful for my son. Thanks for posting.

[Karenish]

I don't know if I was lucky, but I fretted like mad before the treatment, reading all sorts of horror stories on the internet, but have to say it was not half as bad as I had imagined. I kept a blog which you may like to read. But basically I had one fever on the first night of the treatment, which they soon had under control, then a couple of rashes which were kept at bay by piriton. one tiny bit of nausea which lasted all of about 3 minutes so not sure where that came from, did not vomit as they gave me anti sickness med. Got jaw ache for a couple of days which I believe is common, it isn't awfully painful, just feels like it does when you have been to the dentist and had your mouth open too long. Palpitations came and went but I just listened to relaxing music and did some deep breathing. I think the best advise is to drink lots of fluids and keep eating, passing water and opening bowels gets rid of the ATG so your body can sort of recover. I had achey joints on the first few days of cyclosporin but once your platelets have thickened the blood a bit that has gone and I am on 2 x 200mg of the stuff daily along with anti virals, anti fungal and antibiotics, plus something to keep my tummy settled. All in all it has not been at all uncomfortable. The treatment keeps improving the more they give it. All I need now is blood levels to return to normal, and we are on the road to recovery, I don't care if they call it remission, I just want to be well again and firmly believe I will be! good luck and contact me if you want to read the blog karensusanw@hotmail.com

[Lisa V]

Sounds like the doctors are giving you the best case scenario in order to calm your worries, Edith. Hopefully they will be proven right, but each patient's case is slightly different from the next.

Everybody I've heard from has had chills and fever with the first infusion, so that is pretty standard. It generally clears up after a few hours and doesn't recur, unless you develop serum sickness (which I think would come later on?) I've heard of people getting hives before, and slowing down the rate of infusion should help that.

As for recovery time, it can vary. My husband sailed through the first ATG with no discomfort (apart from those first few hours), but the high dose of cyclosporine they had him on initially (calculated based on body weight) made him tired and hoarse and gave him hand tremors. He also had lots of unpleasant side effects to the prednisone, so he was not able to do much for several weeks until we tinkered with his meds a bit.

The second time, in comparison, was a fast recovery. By that time we knew what his optimum cyclo levels were, and since he'd had no serum sickness issues the first time, he was able to get by with much less prednisone. He was back at work the next day, so it is possible. It was the other meds rather than the ATG itself that made it difficult the first time.

As for the 80% chance you'll never see them again, that sounds a bit optimistic. My understanding is that ATG has a 70-80% rate of response, which doesn't necessarily mean full recovery of normal counts, just keeping them above transfusion level (aka partial remission). Add to that the chance of relapse, which off the top of my head I think is around 30%, and you have a slightly different picture. On the other hand, as medical knowledge and treatments improve, the odds improve too, and old statistics don't always reflect that.

[edithr]

Ahhh... that sound you hear is me breathing a sigh of relief. We are home! Karenish, you were right - the anticipation was really the hardest part. I imagined all kinds of horrible things going wrong, and thankfully we (he) pretty much sailed through it.

Like I posted earlier, he had hives the first day. The second day he got heartburn, nausea, vomiting, shakes, chills (are they the same? he was shaking pretty bad), fever. So Lisa V, add us (him) to the list of fever & chills. It lasted a little over three hours, but because of the fever he was stuck in his room for 24 hours in case it was something else. So I took Karenish's advice, and from then on I made him drink plenty of fluids, and I don't know if it was that or additional meds, all I know is that he did not have it again.

Counts - WBC 4.0, PLT 42, neutrophils 3300-ish. Does that sound good? They're the best numbers we've seen.

[fibogann]

Hi edithr,

My son went back to school (college) almost immediately after his ATG, but was warned that being in a crowded place such as a lecture theatre or a tutorial class might be bad as it is easier to catch an infectious disease such as a cough or flu due to low neutrophils. But he went ahead nevertheless.

The outstanding difficulty is, apart from the danger of catching a cold and flu that after ATG, the three bloodlines deteriorated. Once the red blood cell counts drop as a result post-ATG, my son could hardly mount a flight of stairs to his tutorial class - he was almost unable to walk the usual steps to the classroom, and came home extremely distressed and for once, began to look me in the eye and asked,"Dad, am I going to die?". That was when I broke down and cried.

Yes, I agree that with your son has the advantage of youth with him. But by and large, if you decide to allow your son to return to school immediately post ATG, be aware and be prepared for these two main things that commonly occur - the dangers of a low neutrophils, and lack of breath and stamina due to low red cell count post ATG.

I will recommend that you get a therapeutic air filter for him as it helped my son tremendously, to ensure a better air quality for him during the recovery process.

I wish your son all the best, and I pray also for his speedy recovery.

[edithr]

Hi Fibogann,

As for red counts, Eric's has never been that low - if I'm reading his labs right then his was 3.46 on a scale of 4.5-5.3. He did not have fatigue prior to tx, how about your son? Should I expect Eric's to get lower because of the ATG or Cyclosporine?

I think I will go to Home Depot tomorrow and get the better air filter, thanks for that. As a bonus, will it cut down on my dusting?

So your son was one of the 70-80% who has not needed more tx? Thats awesome. I can totally understand crying if my child asked me if he were going to die.

Can I ask too what herbal supplements you used? I see it in your tag line.

Also, the docs don't seem to be too concerned about crowds, which is surprising to almost everybody I know.

[fibogann]

Hi edithr,

The haemoglobin count was good before ATG. The red cell count was holding for a while after the ATG and then dropped below the threshold level where a transfusion was required. I understand that the ATG will wipe off some red cells as well, so it is not uncommon to see the three blood lines to drop ...so I'll won't be surprised the red cell count will drop in your son as well after the ATG.

For the platelets, my son used shark liver oil as a supplement to boost the platelets count. For the aplastic anemia itself, a herbal supplement called Blood Well and Blood Tonic was used. During the period when my son continued to attend class, he did got infected with a cold and cough or a flu through the classroom. The herbalist recommended him to go on Black Cumin seed oil and cordyceps, which helped him recover fast without the antibiotics. Hope the experience you read of here in this forum will be very beneficial to you as it has been to me.

Best wishes,

[Joanna]

I am extremely low on energy, constant fatigue & being out of breath. I knew sth was going on but my physician doesn't care to even look at me. When I was abroad on the trip, an emergency situation led me to the hospital where I was diagnosed with 2 very serious issues. It is not anything concerning blood directly so I am off topic now. But that question..."Am I going to die..?" comes to me sometimes, recently more often. And I don't have anybody to take care of me...
Sometimes it got so bad that I have done sth stupid, desperation makes ppl do stupid things...ended in ICU when they rescued me.....
The lack of perspective is sth I don't know how to deal with. Firstly - they discovered only few of health issues and some of strange symptoms are undiagnosed yet because the doctors don't treat me seriously. I've spent last year trying to find ONE doctor in here but in vain. If not for that emergency abroad, when they immediately looked into things, I would have never been diagnosed at all...

[scully]

I recently finished ATG at Moffitt on Feb 4th. Durning my stay it was a cake walk. Zero problems, good appitite on and on. About day five after neturning home I developed "Serum Sickness" Very suddenly overnight I began to breakout in rashes, bruising head to toes. Scared the heck out of me because this was a Saturday and hard to find someone farmilier with your case or protical. Anyway I had alot of pain first legs then arms. But it all passed fairly quickly. I was working from my home office within 10days "to tired to go anywere and all the meds made me feel a little goofy. Did not sleep much because of the prednisone, if he is on that have him take it early in the day. 30 days after I am able to travel for my job, I drive about 1000 miles a week round trip from Ormond Beach Fl to Naples and in between. No problems I try to stay out only 3 days a week. I was off the neuprogen shots in about 10 days after. My hgl is doing well at about 10, whites up and down but a bit better and Platlets seem to do what they want put remaine consistantly over 20. I'm glad I did it, I put it off for a while because I was terrified. But my entiree outlook on life and well being has changed this month. Don't self diagnose on the internet it will drive you crazy, and Keep the faith.

Good luck to your son and family.

Male dx 2010 MDS 46y

[edithr]

Hi Scully,

I don't know why this old thread (two years) was brought up, but I thought I'd chime in. ATG went pretty good (just some hives and mild flu like symptoms), and Eric went back to school a few days later. No serum sickness either. The prednisone made him a little more likely to get mad at little things, but he recognized it was happening.

I have learned so much since then, I feel like I should get college credit for hematology 101. I agree 1000% about self diagnosing from the internet!

Are you on cyclosporine now? How hard is it for you to keep out of the sun in Florida?? I hope you see results from treatment. That was the other thing that I was obsessed about for a long time: lab results. He was going three times a week, and I would make myself graphs and charts with all the information I had.

Best to you.