ATG

[Bobbye A]

Hi everyone!

Can those of you who have been through ATG therapy tell me what, as a caregiver, I can do to make this any easier or less stressful for someone.

Can you tell me what to expect. I realize it is different for different people but I'm starting out with a patient who is clostrophobic and afraid to be shut in a little room for ten days to begin with and of course petrified to be in a hospital situation with NO white blood cells.

Is the ATG treatment likely to make things worse before they, hopefully, get better. With wbc of .7 and no neutrophils it can't go very much lower. I know I have read it can be very painful, is the pain likelly to start right away or wait until the body starts having a problem with reaction to the drugs? Does what they use to control the pain usually work? I'm trying to get some idea in advance how we might head some of this off or at least figure a way to help pass the time. I'm not sure if the hospital TV's are equipped for DVD's or not. There was a problem with that last time, and she says she can't concentrate to read, etc.

I appreciate ANY suggestions offered.

Bobbye

[Connie]

Bobbye,
All I can really say is to be there when you can. My husband came to visit me each day. Except one, I was too sick that day. I had a tv with a video machine in my room. I borrowed videos of our Church service to watch. It is hard to concentrate though. A friend gave me some little games, like tiny puzzles, and little key chain games. I assume she will have a telephone in her room also. And my husband brought me some of the mail to read. Like cards. I did sleep a lot also.
Warm no-slip socks or slippers are very helpful too, as I got very, very cold.
All of my blood cells dropped very low. So you might expect that to be a possiblity. It takes a long time for the blood counts to go back up again, so try a lot of patience.
While in the hospital room, I was not able to have much company for a few days. Any company had to wash their hands, and could not enter the room if they had even sniffles. I had to wear a mask if I left the room.
As far as pain went, it seems to me that most of it started about a week after treatment. I was pretty lucky there. Didn't have much bone pain. That could be from Neupogen. I did have terrible head aches, but they came when it was about time for a red cell transfusion. They did give me meds to help with the head aches and the transfusion helped also. You can always try other meds if one doesn't work for you. Just explain to the Dr. that one doesn't work. They will prescribe another.
Bobbye, we are here for each other. We like to help when we can. If you wish, you can write me at
prissy1922@aol.com
Good luck!!!! Hang in there, it does get better.
Connie (diagnosed SSA in 2000. Took ATG, short remission. Then took ALG in 2001.
Now in full remission?)

Originally Posted by Bobbye A

Hi everyone!

Can those of you who have been through ATG therapy tell me what, as a caregiver, I can do to make this any easier or less stressful for someone.

Can you tell me what to expect. I realize it is different for different people but I'm starting out with a patient who is clostrophobic and afraid to be shut in a little room for ten days to begin with and of course petrified to be in a hospital situation with NO white blood cells.

Is the ATG treatment likely to make things worse before they, hopefully, get better. With wbc of .7 and no neutrophils it can't go very much lower. I know I have read it can be very painful, is the pain likelly to start right away or wait until the body starts having a problem with reaction to the drugs? Does what they use to control the pain usually work? I'm trying to get some idea in advance how we might head some of this off or at least figure a way to help pass the time. I'm not sure if the hospital TV's are equipped for DVD's or not. There was a problem with that last time, and she says she can't concentrate to read, etc.

I appreciate ANY suggestions offered.

Bobbye

[Lisa V]

Bobbye, it's impossible to predict how your sister will react to the ATG, but it isn't necessarily painful, so don't assume that it will be. What seems to be fairly standard is some heavy-duty chills and fever and general flu-like achiness following the first day's infusion. They gave my husband Tylenol for that and it passed in a few hours. After that he had no discomfort from the treatment, although he felt tired and slept a lot. They give Benadryl as part of the pre-conditioning and it kind of knocks you out. Just as well, you have to get your sleep when you can in that kind of setting because they're always coming in and doing something, day or night.

He hated being cooped up in a hospital room for days too, and got pretty depressed. I'd come and make him get up and walk the halls with me, so at least he'd get a little excercise. As Connie said, it gets really cold in those rooms too, so a sweatshirt or extra wrap and some socks are a good thing to have. Also a robe from home, unless she doesn't mind walking around in a hospital gown.

It is likely her counts will go down before they come up again. ATG tends to "eat up" platelets, so she may need to be transfused often. The worst part of the regimen for Ken was the prednisone. It made him really irritable and made food taste funny. This became more noticeable once he got home, when he'd been on it for a while. Other people may get an increase in appetite with it, but he couldn't stand the taste of most things, so it's an individual thing. It also gave him thrush (oral yeast infection), and of course the puffy face, which I think everyone gets. It all goes away as soon as you stop taking it though, and it does help prevent serum sickness.

Cyclosporine is also a part of the regimen, and there may be side-effects to that too, like hand tremors and extra hair growth. If she's getting Neupogen that can cause some bone pain too. I don't think it's usually extreme, but then I'm not the one who had it so I can't swear to that.

I guess the best thing you can do is just be there and be supportive and try to create as much of an atmosphere of normalcy as you can. It also helps to take notes and ask questions of the medical staff and try to gain a better understanding of what they're doing and why. Often this is too much for the patient themself to cope with, especially if they're kind of out of it with all the Benadryl and other meds going in, so having an advocate is a very useful thing.

[David A]

Hi Bobbye

Just over a month ago I had ATG treatment for AA /MDS at Royal North Shore Hospital in Sydney Australia. I had anticipated that I would be put into a ward on my own, but in fact I shared a ward with three others. After being given a reaction test for ATG, the ATG transfusions commenced on the second day. There was little pain, and everything seemed to be going just fine for the first couple of hours, but then I started to get itchy all over and broke out in an incrediable rash. They interrupted the ATG transfusion and gave me medications to reduce my reaction. Two hours later they recommenced the ATG, but at a much slower rate. This seemed to work just fine. I had another 4 bags of ATG over the next four days at this slower rate, with each transfusion lasting about 8 hours. I was also on a high dose of cyclosporine (450mg) twice a day as well as prednisone (40mg) twice a day.
During my stay in hospital I had great difficulty sleeping and my blood sugar levels went very high on a couple of occasions. Fluid retension was also a problem. After six days I was released from hospital and have had weekly blood tests. My cyclosporine is now down to 150mg twice a day and I have been totally weaned off the predisone. Two weeks after getting out of hospital my platelets count went down to ten and it looked like I was about to get my first platelets transfusion. However they did another blood test and my platelets had increased to 18. Since then my platelets have increased each week. They are now up to fifty. Both red and white counts are both below the normal range and are much the same as when I went into hospital. The main side effects to the medications have been that my vision went a bit strange (seeing flashing lights) and I could not tell if the shower was hot or cold. At the moment, five weeks after I got out of hospital, the most disturbing thing is that I get bad cramps especially at night. I am taking magnesium tablets as my magnesium level is low, but this does not seem to be helping all that much with the cramps. I walk the dog each day but if I do much more than this I pay for it the next day. I have been very lucky in that I have not had any fevers, colds, flu etc. Hope this experience helps anyone who is about to undergo this treatment.

Cheers, David A

[EmilyK]

I have had ATG on two seperate occassions. Both of my experiences at the hospital went very smoothly. I had a moment of leg pain that lasted for a few hours which they were able to treat with pain medications. I also had hot flashes which were a result of all the steriods not the ATG. The treatment honestly wasn't very bad. I did have serum sickness on both occassions but it occured after the treatment when they began to take me off of the steriods. This was very painful, but it went away as soon as my doctors increased my steriods. This was also treatable with pain medications and it did not last more than a few days. Each time I have had ATG my counts did go down at first, but not for long, and after I got over the treatment I went over 2 years without transfussions. This is my experience, but like you said each person will react differently!

[michelle_lapuz]

I underwent ATG therapy in October and it honestly wasn't too bad....the toughest part was probably the insertion of the PIC line but after that it was smooth sailing. The Sol-Medrol (prednisone) at high dosage was probably the toughest to deal wilth but it did the trick for preventing side effects from treatment. I did develop serum sickness after my doc prematurely tried to wean so I had to endure an extra high dosage of Prednisone for a few weeks (which is tougher than the treatment itself). I am still awaiting a response but am told that it could take a few months before we see it. Hang in there, you will do awesome Bring lots of books and maybe an instrument to learn, it will pass the time quickly......

Good luck,

Michelle

[Birgitta-A]

Hi Michelle,
Do you only get ATG and prednisolone and no other drug like Cyclosporine?

Good luck with your treatment!
Kind regards
Birgitta
68 yo, MDS intermideate-1 dx May 2006, transfusion dependent, Desferal 4 days/month, Neupogen 2 days/week, Presnisolone 5 mg/day. Asymptomatic.