Practicalities of ATG treatment?

[stephy]

ATG/cyclosporin treatment has been suggested by my consultant. He gave me some info about how the treatment works etc, possible side effects, and suggested I go away and think about it.

However for me the bigger questions are about the practicalities of the treatment and how it will interfere with life. I'm mAA progressed to sAA and I'd just got my head round the "transfusion as required" thing and slotted my life back round it - but now it seems things might have to change.

He mentioned I'd need 5 days in hospital for the course. What is this like? Is it in isolation? And then do you leave once the ATG is finished and continue the prednisolone/cyclosporin at home, or do you have to stay inpatient for longer? How well am I likely to feel then - how long until gently starting back to work, seeing friends etc?

Sorry for all the questions, just would like to have a really full picture to help me make my decision (although know this is a different journey for everyone so there's never guarentees).

Stephanie

[Neil Cuadra]

Hi Stephanie.

My wife was inpatient for 5 days while she received ATG treatment. She was in a private room and had a specific nurse assigned to watch her, but she could have visitors. After those 5 days she was released home but we had to come for regular checkups and/or transfusions.

Some of our forum members can tell you about it first-hand. In the meantime you can read other Marrowforums threads about ATG. Here are a few that I spotted:

Requesting success stories with ATG

going in for ATG next week

ATG

[JEZ]

If you put my name in (JEZ) and hit search, I have commented quite a bit about my experiences with ATG and Csa.... It was tough but 2 1/2 years later I am glad I did it. AA is something I am always having to adapt to in my life but I have learned to react as things change and do the best I can.....Best wishes in whatever route you decide to take.

[Neil Cuadra]

This link will retrieve all posts JEZ has made in the forums.

[Hopeful]

Hi Stephanie,

Everyone is different. You could get lucky like me. They kept me at the hospital for 10 days, but could have let me out sooner. I was in isolation for only 3 days (a more urgent case came in and they needed my bed). While in isolation, you can still have visitors if they are healthy. The air in the room is filtered, and it seems like everyone takes extra precautions to keep things sterilized while your ANC is low. You also get the best nurses, which is a definite plus

Expect to have a rough night after your first dose of ATG (flu-like symptoms, high fever, maybe cramps). Apart from that first rough night, I felt fine except for day 5. A nurse advised me to "get moving" as soon as possible. So, by day 2, I was walking the halls and stairwells twice a day (with a mask). When I got home, I continued prednisone and cyclosporine. I still had regular blood tests and got transfusions as needed. I was able to function like normal at home immediately, but again I was lucky as my doctor thought it would take a month post-ATG to feel okay. I still got tired early. Prednisone was a nightmare (literally). Everyday I *felt* better, although I still needed transfusions for awhile. Psychologically, it was very rough watching and waiting (and still is)!

If you have SAA, then you must either go with IST or a transplant. Watch and wait is not an option, as the disease will progress rapidly left untreated. Transfusions are not treatment.

Best of luck! Think positive thoughts!

[Lisa V]

Stephanie, you can read some of my previous descriptions of my husband's two ATG experiences in the link Neil has provided, or by searching my name too. He had a private room, but was allowed visitors if he wanted them. Actually, it was just me. I told everyone else it would be better to talk to him on the phone, which worked out well. Luckily he never became severely neutropenic. If he had, they would have tightened up on precautions to avoid infection, which they explained to me at the outset.

Hopeful brings up a good point, though. What sort of decision are you trying to make? Between ATG and BMT or between ATG and not treating at all? Those are two very different issues.

If you're looking at the relative impact the procedure itself will have on your life, a transplant is HUGE compared to ATG/cyclo. In fact ATG is often part of the transplant protocol. There you're looking at a minimum of 3 months down time, and with complications (which there often are), it could be much longer. The decision whether to go that route rather than trying ATG first would depend on your age and whether or not you have a good match. If you are young and have a sibling match, your odds for a complete cure are good.

If you don't have a sibling match or are over 40, then ATG is the usual first line of treatment. It doesn't guarantee a permanent fix, but doing nothing is not really a viable option for most people. I do know of a few people who have gone other routes, i.e. making strict nutritional and life-style changes, avoiding medications and other toxic chemicals, but I only know of one who has managed to achieve a full recovery that way. Spontaneous recovery with no action whatsoever is not unheard of, but it is pretty rare once you get to the point of needing transfusions.

Transfusions bring with them a host of problems too, like iron overload and histological incompatibilities. They may be unavoidable, but if there is a way to minimize the number of transfusions you need, my advice would be to take it. Transfusing alone is not a good long-term survival plan. I'm not trying to frighten you any more than you already are, just clarify some of the issues that go into making treatment decisions.

All the best with whatever you decide!

[leeslay]

Hi, I just completed my second round of ATG last week. I first did the rabbit ATG because I had an allergic reaction to the horse ATG. It did not work so my Dr wanted to try the horse ATG as it was either that or transplant.

I had severe serum sickness with the rabbit, but everyone reacts differently. The horse went a lot smoother I believe mostly because of the facility. They stopped it when I started getting sick and having reactions. They took it slow - about 6 days. I am currently on cyclosporine and prednisone. I hate prednisone and want to start weaning myself off. It keeps me up all night, I have had 5 hours total sleep in the last few days. I can't even take a nap during the day even though I can barely stand up from exhaustion.

I feel ok, just really tired, bloated from all the meds and my legs and arms are really weak. Thank goodness I have my family - wonderful husband and two girls - to help me out. They won't let me overdo it - I would if they didn't make me sit down.

I had always been very active, worked full time and worked out 3-4 days a week. We were always on the go and this has totally changed my life.

My counts were up as of Tuesday which was amazing because my rbc count never went up on its own, I was getting monthly transfusions which caused iron overload - that is a test I would demand they do monthly because my counts were skyrocketing and this all started in April. I am now on 11 exjade tablets a day, it is a very expensive medication. My platelets went up from 13 to 39 and my wbc was up. I did get a sinus infection right after I got out of the hospital last week, but I was put on some antibiotics and it went away pretty quick.

I would research the facility that your Dr wants to send you too. Make sure they have done the ATG before - the rabbit ATG was done at a smaller facility and they just kept pumping it in no matter how sick I was.

It is a big decision but I am happy we did the horse ATG, especially if my counts start going up!!

I hope this helps you, God bless you and watch over you.

[squirrellypoo]

Welcome, stephy!

Do you know if your consultant has been discussing your case with Prof Judith Marsh at Kings? She's the leading researcher and specialist in Aplastic Anaemia in the UK and as AA is still a rare disease, it's really worth getting her input on your best course of treatment.

I got referred to her a year ago, and although my diagnosis was altered to be hypo-MDS (which wasn't a bad thing as I then came under the care of Prof Mufti, who's the big MDS specialist at Kings!), I still find my clinic appointments with her to be SO useful - she can answer questions that even the other consultants there couldn't explain. I had my BMT there this summer in their dedicated BMT ward, the Derek Mitchell Unit, and the twin haematology ward, Davidson, is where the ATG patients (and us post-BMTers) go. I cannot speak highly enough about the care and the staff at Kings, and if I were you I'd totally push to get your treatment there if at all possible, because they (and Guys, to an extent) really know their stuff when it comes to haematological disorders. Patients from all over the world fly to Kings for treatment, so we're really liucky that we're already close by in the same city.

[destiny09]

Originally Posted by stephy

ATG/cyclosporin treatment has been suggested by my consultant. He gave me some info about how the treatment works etc, possible side effects, and suggested I go away and think about it.

However for me the bigger questions are about the practicalities of the treatment and how it will interfere with life. I'm mAA progressed to sAA and I'd just got my head round the "transfusion as required" thing and slotted my life back round it - but now it seems things might have to change.

He mentioned I'd need 5 days in hospital for the course. What is this like? Is it in isolation? And then do you leave once the ATG is finished and continue the prednisolone/cyclosporin at home, or do you have to stay inpatient for longer? How well am I likely to feel then - how long until gently starting back to work, seeing friends etc?

Sorry for all the questions, just would like to have a really full picture to help me make my decision (although know this is a different journey for everyone so there's never guarentees).

Stephanie

My daughter had both, she didn't respond to ATG treatment, she also had fungal infections and blood infections afterwards, she was in the Peds ICU, then hospitalized for two months afterwards. Cyclosporin has been hard too, she has huge increased gums that cause a lot of bleeding and have to have surgery on them. ATG has a risk of causing cancer, the risk is increased at each exposure of it. She is waiting for an bone marrow transplant, as she has had over 112 blood tranfusions since may- she is diagonsed with very severe aplastic anemia. Sorry for the Diagnoses, as it's been a rough journey for us. Her carepage www.carepages.com search alexisrose for this journey.

[Lisa V]

Originally Posted by destiny09

ATG has a risk of causing cancer, the risk is increased at each exposure of it.

While it's true that immune suppressants do increase your risk of contracting a variety of ailments, including some cancers, you really have to weigh that against your other options. The risk of untreated SAA or VSAA is much higher, in my opinion. All of the currently available treatment options carry a degree of risk, and that is true for many other medical conditions as well. Keep in mind that the transplant process involves even more immune suppression than ATG/cyclo. Unfortunately, the best we can do when faced with a life or death situation is try to choose the lesser of the evils and hope for the best.

ATG/cyclo has given my husband and me several years of normal life that we wouldn't have otherwise had. I know that sooner or later he may pay a price for it, but having weighed all of the alternatives, I am convinced it was the best choice for him. I'm really sorry your daughter didn't have the same response, Destiny. I can't even imagine what you must be going through as a parent. I hope they are able to find a good donor match for her!