Second ATG at age 69?

[flyguy]

For background information I was diagnosed with MAA about a year and a half ago. Before this diagnosis a BMB showed NHL IV in my bone marrow but it wasn't detected in my last BMB following Rituxan infusions. The MAA was believed to be the primary reason for low CBC and I've been treated for over a year with CSA, which I couldn't tolerate, and now Prograf, also troublesome.
Blood numbers have been-- HG 7 to 9, WHC 2-3, and platelets 14 to 28. I underwent a difficult ATG for 12 days last Winter and was transfusion dependent for 6 weeks following the procedure. My CBC numbers are not responding to the Prograf and last week they were WBC 2.0, HG,9, and platelets 28. My primary hematologist says the optimum results from ATG (horse) is 6 months. I saw him last month for the 6 month appointment and the blood numbers were still low. He elected to give me 3 more months (till August)and review the CBC to decide what to do. In the meantime he raised my Prograf from 2 mg to 3 mg per day and it's almost made me bedridden. I sleep for 14 hours a day, have diarrhea, loss of taste and extreme fatigue. I tolerated it for 6 weeks but told my secondary hematologist I couldn't continue that dose because it was worse than the AA. I've now been put back on 2 mg per day. The CBC numbers were apparently unaffected by the increased dose so the side effects were unnecessary, although we didn't know it at the time. In August I go back to primary hematologist and I suppose we will discuss another round of ATG.
What experience have others had with a second ATG when the first wasn't successful? I'm too old for a BMT and have no donor. I've been very active in the past and the last year has really been difficult. I'd go thru whatever has a chance of helping my energy level but haven't heard much good about second treatments with ATG. I've been to Johns Hopkins for a consult and nothing was offered since I wasn't SAA (yet?). I'm very happy to be alive and doing what I can to resume a normal lifestyle, but a bit concerned about the risk vs benefit of more ATG. Any experiences or ideas would be appreciated. My doctors are very open but I don't know what else has worked for folks my age.
Thank you very much for your consideration.
Flyguy

[Hopeful]

Hi Flyguy,

I also had a lackluster response at 6 months post-ATG. My doctors also had me double my cyclosporine dosage at the time, which made me really ill with no benefit. I decreased my dosage after a month and ironically, at 8 months post-ATG, my counts finally started to rise...slowly. So, don't give up hope yet. If you are transfusion independent, you've had some kind of response. Your marrow can start to recover at anytime.

Because of the risks of infection associated with ATG or ALG (not to mention the risks of bone death with prednisone), my doctors didn't advise this approach while I was transfusion independent.

[lotusbud]

Hi Hopeful,
what do you mean by "bone death by prednisone"?

[Gloria J]

Hi FlyGuy,

Just wanted to chime in - give the ATG some more time - it took me almost fifteen months before I was transfusion independent after the ATG. Two years post-ATG, my platelets are in the 50s, Hgb in the 11-12 range, and white cells bounce between the 2s and 4s. Not amazing counts, but amazing enough for me.

It's so frustrating when your counts don't bounce back, but I can see from the posts here that not everyone responds so quickly. At six months past-ATG, I was still being transfused every four-five weeks, but by the one-year mark, it was down to every two months.

Unless your counts are trending downward, give it some more time.

Good luck!

[Hopeful]

Hi Lotusbud,

Avascular Necrosis (AVN) is a potential risk of prednisone. It usually effects the joints, most commonly the hips. It can occur months or years after treatment. It is not extremely common, but it does happen.

[flyguy]

Hi Gloria J, Hopeful, and Lotusbud. Thanks so much for the advise and information. I can see that my experience isn't isolated and that many factors have to be considered in further treatment decisions. I am past my 8 month evaluation from the ATG and the next will be the 9th month. The trend is that numbers are slowly drifting downward, though not critical. I sure appreciate the possibilities of creating secondary problems with another round of ATG and am even considering asking to get off the Prograf for about 3 months before making a decision about hospitalization for ATG. Just coming back from 3 mg a day to 2 had been helpful but I've never even approached the therapeutic serum level suggested, so why tolerate the side effects of a sub-therapeutic dose? Oh well, that's my thinking today. Maybe if the levels go up in August I'll feel better. I'm getting better at waiting these days, but not as good at repeating painful treatment unless it has a good chance of helping.
Thanks for the support and good wishes. I'll keep the group up to date with what's happening. Next CBC is 2 weeks.
One additional question-- Has sleep been a major problem for others since either CSA or Prograf? I'm weak and sleepy all the time but three different sleeping pills haven't made much of a difference. I'm not sure what is the AA and what is caused by the medication but it's a real problem since ATG.
Flyguy

[Hopeful]

Hi Flyguy,

One other option to consider is Campath. There are currently a few clinical trials for it that you may qualify for:

http://patientrecruitment.nhlbi.nih....ticAnemia.aspx

One benefit of Campath is that it is given outpatient.

I am also below the "therapeutic level" for Cyclosporine. My system just metabolizes it too quickly. It was too toxic for me to increase the dosage any higher. I do think the low dose is still having a positive effect on my marrow.

There just aren't any hard and fast rules on what levels should be for bone marrow failure disease patients. Again, everyone is different.