going in for ATG next week

[flyguy]

Please forgive me if I ask questions that have been covered many times before. I just found this wonderful forum last night. I'm 68 years old and have a mAA diagnosis after being treated for NHL IV with Rituxan. My blood counts have continued to drop for almost a year and now platelets are down to 14 and RBC and WBC well below normal. I've been to see Dr Brodsky at Johns Hopkins and he now agrees that I need ATG. I've been on oral cyclosporin plus antibiotics for 4 months without remission of blood decline. Next week I go in for at least a week of ATG (don't know if it's horse or rabbit). I'm naturally somewhat anxious because of my age and also the serious reports of serum sickness. Can anyone give me an idea of what to expect during my hospitalization? I'll get 5 infusions over 7 days and expect I'll get benadryl and steroids as a precaution. I get a dual lumen port implanted next Wednesday so things are getting pretty busy for me. I'll get two units of platelets on Monday so hopefully they will last 2 days for the port procedure. Any information would be very much appreciated.
Thanks
Fly guy

[Gloria J]

Hi Fly Guy,

I received Horse ATG at NIH in April 2008. My counts were quite low just before I was admitted (.64 ANC, 7.3 Hgb, 9K Platelets), and I was given platelets and PRBC before the ATG. I had a PICC line installed, and it made everything very easy - infusions, meds, blood draws at five in the AM! I was very lucky - the first ATG infusion was just a little rocky - shakes and chills were relieved by IV Demerol. I slept through the rest of them. Don't hesitate to tell your nurse if you're feeling unwell during the infusion - they have all sorts of tricks up their sleeves to help you with symptoms.

Concurrently, I was taking Cyclosporine, Prednisone (to ward off serum sickness symptoms), an anti-viral med, an anti-nausea med (taking thirty pills a day did not suit my stomach!) a blood pressure med and Magnesium (since the Cyclo tends to lower magnesium and raise blood pressure). I also had breathing treatments monthly (Pentamadine) to ward off a particular type of pneumonia. The folks at NIH are angels, and made sure I was given everything I needed to be comfortable.

I was also lucky enough not to get any serum sickness symptoms at all, so I was weaned off the Prdenisone fairly quickly. Most of the meds I eventually stopped, although I still take Cyclo, a blood pressure med, and magnesium. I'm slowly being weaned off the Cyclo.

My counts improved only after about 15 months. At one year post-ATG, I was still being transfused about every 8 weeks. But June 2009 was my last transfusion, and these days my counts run - high 9s - Hgb, mid 2s - WBC, and 30Ks - platelets. Not spectacular, but I feel really well, and most of the time I'm not neutropenic.

It seems everyone has a different experience, not only during the ATG infusions, but afterward in terms of response. My response was quite late and I was offered re-treatment at one-year post-ATG, and chose to let the summer go by. Am I glad now that I did!

Expect to stay in the hospital at least ten-fourteen days, so bring lots to keep you occupied - books/crosswords/etc. Keep in touch with friends and family, they will help the most. I kept in touch by email, and that contact meant so much to me.

Good luck next week, and let us know how it goes!

[flyguy]

Originally Posted by Gloria J

Hi Fly Guy,

I received Horse ATG at NIH in April 2008.

Hi Gloria, Thanks so much for the information. I'm so glad you are stabilized and doing better. I don't know why my doc keep telling me that I'll be there exactly 7 days since I read often that sides can increase the hospitalization considerably.
I'll let you know how it goes. Glad the port will help.

Fly Guy

[Lisa V]

Fly Guy, if you click on "search" at the top of the page, and then enter "ATG what to expect" (or even just "ATG") a number of old threads will come up that you can read. Easier than going through the whole site trying to find them.

Basically, people's experiences with it seem to range pretty widely. Some do have a rough time with serum sickness, but my husband was one of the lucky ones in that regard. He's had horse ATG twice, and no serum sickness either time. The only real discomfort he had from the serum was after the first infusion on the first day. He had chills and fever and general achy flu-like symptoms, but they passed after a couple of hours. They give Tylenol for that, Benadryl to minimize any allergic reaction, and Prednisone to help prevent serum sickness. For him the Prednisone caused a lot of unpleasant symptoms (irritability, rash, thrush in the mouth, bleeding gums, food tasting funny, etc.), but since he hadn't had any serum sickness the first time, they started him on a much lower dose the second time around, and it was much easier on him.

Same with the cyclosporine. He'd already found his comfortable maintenance dose, so they didn't have to start him on such a high dosage. It's really trial and error and learning from past experience, but because of that he was able to resume work immediately the second time, whereas he was too tired and uncomfortable from all of the meds to do much for several weeks the first time. Since you're already on cyclosporine, that aspect should be easier for you too.

The only other difficulty he had really stemmed from our hospital staff's inexperience, and could have been easily avoided. To be fair, ATG is not a common procedure, but anybody who is familiar with the process knows that chills and fever with the first infusion are standard. Unfortunately, for his second round they made the unexpected decision to start him in the middle of the night when neither I nor his regular doctor were around to tell them that. The attending physician mistook the serum reaction for infection and put him on heavy-duty antibiotics, triggering a nasty C. dificile infection, which was much more miserable than the ATG treatment itself. Once they figured that out and took care of it, he was fine. I'm only mentioning this to show how important it is to have staff who are experienced with ATG. If we ever have to do it again I'm going to make sure that everybody knows what to expect, so they don't jump the gun.

Yes, your port should make things a lot easier too, particularly since you're getting a double lumen. Ken had to endure a lot of needle sticks the first time, but by round 2 he had a subcutaneous port by his collarbone, and that freed his arms up quite a bit. Don't be surprised if you need to be transfused quite a bit during the process. For many people, ATG tends to "eat up" platelets, so you may even have to get them daily while you're there. It varies, everyone is different. Response time varies a lot too. Ken took about 10 weeks to become transfusion-independant the first time, but only 5 weeks the second time. The overall response for him has been slow and gradual. Even several years later we're still seeing gradual improvement, although he'll often plateau for a while.

It seems ironic that Rituxan seems to have been the trigger for your AA, when that has sometimes been tried as a treatment for it! I guess that's true for a number of drugs used in cancer treatment, though. Just goes to show how unpredictable people's response can be, but I hope this treatment goes smoothly for you!

[flyguy]

Originally Posted by Lisa V

Fly Guy, if you click on "search" at the top of the page, and then enter "ATG what to expect" (or even just "ATG") a number of old threads will come up that you can read. Easier than going through the whole site trying to find them.

Hi Lisa,
Thanks so much for the information and ideas on what might happen. My onc says he has done 4 or 5 ATG infusions a year for 12 years so I sure hope he has trained the staff to handle odd reactions without panic. I hadn't thought about the problem of having the hands tied up for such long times, not to mention the stress of having so many extra sticks in the arms. I'll to the search for ATG and review the literature.
Thanks and good luck to your husband.
Fly Guy