6 months since ATG, fair response, maybe moving to BMT?

[susansr]

Had horse ATG in February 2010. platelets hovering at 30,000 and Hct at 28.
Transfusion-free for 12 weeks. Docs not satisfied with response and think I should consider BMT at this time. Am 54 y.o. and very confused what to do.
Any feedback?

[m mindas]

I also am moving to a SCT after horse ATG in Feb. 2010. However, I did not get any response. My platelets are not stable, Hemoglobing goes down slowly, but surely and WBC are about 1.7 most times. I am fearful of a SCT and not sure why another round of ATG was not recommended. I am hopeful about a possible cure with a SCT, though. I know it is a hard time at first, but in the end we may be rid of these diseases! I'd love to know how you do with your continued treatment

[flyguy]

Had horse ATG in February 2010. platelets hovering at 30,000 and Hct at 28.
Transfusion-free for 12 weeks. Docs not satisfied with response and think I should consider BMT at this time. Am 54 y.o. and very confused what to do.
Any feedback?

Hi Susan and Marian,
I'm afraid I don't have any answers but just wanted to say that I understand your anxiety and concern about the future. I'm 9 months out of ATG (horse) and saw oncologist yesterday. My numbers are just as they were before treatment-- Platelets 32,000, HGB 27, and RBC 2.2. He didn't suggest a second ATG because we got no response and I've had terrible side effects with Prograf so he took me off it. I'll get second BMB on Friday and we will discuss the results in 2 weeks. I'm 69 and he ruled out BMT because of risks and his only suggestion was a clinical trial with Neal Young at NIH. I feel a little like an orphan with no ongoing treatment but I guess it's just watch and wait for a while to see what's going to happen. I'm almost hoping something treatable shows up on the BMB as I'm discouraged for now. Good luck to both of you and I hope your treatment plans hit the mark.
Best of luck,
Flyguy

[Hopeful]

Hi Susan,

I think it is too early to jump the gun to a transplant. At 6 months post ATG, my numbers were very similar to yours. It took me 7 months to break through 40 with my platelets. For others it is even longer. I am still on cyclosporine and my platelets are still ssllllowwwwly climbing, now 20 months post-ATG.

Patience is key. If you have had a response (i.e. you were transfusion dependent and now you are not), I'd give it more time. Are you taking and tolerating cyclosporine?

[susansr]

I also am moving to a SCT after horse ATG in Feb. 2010. However, I did not get any response. My platelets are not stable, Hemoglobing goes down slowly, but surely and WBC are about 1.7 most times. I am fearful of a SCT and not sure why another round of ATG was not recommended. I am hopeful about a possible cure with a SCT, though. I know it is a hard time at first, but in the end we may be rid of these diseases! I'd love to know how you do with your continued treatment
So are you getting transfusions regularly? How does your doc feel about your status as recipient of sct?

I am on tacrolimus now. waiting to get other opinions about needing bmt or still waiting to see if my numbers may still rise over next 6 months. Seems like its inevitable getting bmt--now or later. It would be wonderful if its successful to be rid of this disease.

[susansr]

Hi Susan,

I think it is too early to jump the gun to a transplant. At 6 months post ATG, my numbers were very similar to yours. It took me 7 months to break through 40 with my platelets. For others it is even longer. I am still on cyclosporine and my platelets are still ssllllowwwwly climbing, now 20 months post-ATG.

Patience is key. If you have had a response (i.e. you were transfusion dependent and now you are not), I'd give it more time. Are you taking and tolerating cyclosporine?

Did your doctors put any time limit when to decide the period of "wait and see"was long enough & time to reevaluate treatment plan? One doc said to move ahead with transplant while other said to wait 6 more months; as you recognized the importance like him that I've been transfusion-free for 3 months and tolerating tacrolimus fairly well. Maybe its my age being 54 while you are 43. Don't know. Also, if I'm fairly healthy now aren't I a better candidate for bmt?It is so risky having bmt.

[susansr]

Hi Susan and Marian,
I'm afraid I don't have any answers but just wanted to say that I understand your anxiety and concern about the future. I'm 9 months out of ATG (horse) and saw oncologist yesterday. My numbers are just as they were before treatment-- Platelets 32,000, HGB 27, and RBC 2.2. He didn't suggest a second ATG because we got no response and I've had terrible side effects with Prograf so he took me off it. I'll get second BMB on Friday and we will discuss the results in 2 weeks. I'm 69 and he ruled out BMT because of risks and his only suggestion was a clinical trial with Neal Young at NIH. I feel a little like an orphan with no ongoing treatment but I guess it's just watch and wait for a while to see what's going to happen. I'm almost hoping something treatable shows up on the BMB as I'm discouraged for now. Good luck to both of you and I hope your treatment plans hit the mark.
Best of luck,
Flyguy
Dear Flyguy: thanks for your response. wondering if you are transfusion-free since your numbers are where you mentioned; if so, that's a great thing in of itself. What does your doc say about maintaining this while not on Prograf any longer? What kind of side effects hit you if you don't mind me asking? I get terrible tremors and since it caused me to be magnesium deficient, I get cramping. I also am considering contacting Dr. Young at NIH. Probably a good suggestion for you too. Let me know!

[Lisa V]

Susan, it's kind of a Catch-22 situation for doctors. On the one hand, they know that acting as early as possible may increase your odds for a successful transplant. On the other hand, waiting may save you from having to go through it at all. It's a gamble, though, so they just have to evaluate your numbers and try to guess where they'll go from here. What you have to keep reminding yourself, though, is that medical professionals are looking at odds and comparative "success rates", and usually not on the effect the course of treatment is going to have on your life. In their minds, a chance at full recovery may seem preferable to a life with lower than normal counts. Whether that is true for you on a personal, emotional or financial level is something only you can answer, but it is a question that must be addressed. Don't just assume they know what's best for you-- they don't know your life.

In order to even begin to make such a decision, however, you'll need to know if you have a suitable donor. Do you have a sibling match? If so, that may help weigh the argument in favor of BMT, but if not, I'd explore other options. Successes in MUD BMTs have increased in recent years, and they are being done on older patients now than would have been considered a few years ago, but it's still a rough road to travel. If you do decide to go that route, I'd look for a transplant center with plenty of experience and a good track record for AA patients. There are usually many snap decisions that must be made during the process, and a transplant team's expertise can make a huge difference in the outcome.

When you say "transfusion-free for 12 weeks", do you mean you still are? You don't give your Hgb, but with Plts in the 30s you should be okay there. If you're not showing any signs of relapse, I'd be inclined to wait a while longer. Counts can sometimes plateau and then start to creep up again, particularly if you don't attempt to taper off the cyclosporine too soon. If they're really "stuck", a second round of ATG may help to unstick them. Even if it doesn't, there are numerous people here who have simply learned to live with lower counts. It's not ideal, but as long as you're not needing transfusions and you are exercising some basic common sense you can have a decent life.

My husband's doctor started talking BMT at some point after his second ATG, but we wanted to wait. I'm glad we did, because his counts have continued to rise, albeit slowly. His Hgb reached normal range after a couple of years, and his Plts have been in hovering in the 100k range for the last couple of years. He feels fine and has a normal life, whereas if he had a BMT, even under the best of circumstances he would most likely be unable to work on our farm for a few years, which for him would be intolerable (not to mention bankrupting). It's an individual choice, I only bring this up as an example of the types of things you need to consider.

[Hopeful]

Hi Susan,

I would side with the doctor that wants to give it more time. 6 more months doesn't sound unreasonable, if you've had a response. My doctors were nervous around the 6 month mark as well. They tried increasing my cyclosporine dosage to see if I could get a more therepeutic level, but reduced it again after a month because I had trouble tolerating it. Maybe this is something else that you could look at??

I've heard from numerous experts that transplants should only be used as a last resort for people over 40 with AA because of the risk of death or serious lifelong problems with GVHD. I would be wary of centers that are trying to recruit you now, while your counts are stable.

I had consulted with a transplant team early on and was told that my chance of surviving 10+ years with a transplant was only 20%, and I have a perfect sibling match. That is a sobering statistic. Maybe my odds are worse because of the MDS and fibrosis factors, but it wasn't a risk I was willing to take when there were other options.

I had the same concerns as you early on. It seemed like everyone else was getting transplants but my doctors weren't even considering it. I thought that I wasn't getting any younger, so wasn't it better to do it now? However, although you feel healthy now, imagine how you'll feel when your counts are even higher! If you are having a response from IST, go with it. Enjoy life. Know that new research is going on in parallel everyday that may make transplants less riskier in the future, should you really need it someday. As soon as you break through the 40 barrier with your platelets, you'll know that you made the right decision :)

[flyguy]

Dear Flyguy: thanks for your response. wondering if you are transfusion-free since your numbers are where you mentioned; if so, that's a great thing in of itself. What does your doc say about maintaining this while not on Prograf any longer? What kind of side effects hit you if you don't mind me asking? I get terrible tremors and since it caused me to be magnesium deficient, I get cramping. I also am considering contacting Dr. Young at NIH. Probably a good suggestion for you too. Let me know!

Hi SusanR,
Thanks for the suggestions. I was transfusion dependent for a couple of months following ATG in November but never got a good "bump" in numbers so they were stopped with HG about 8.8 and platelets in the 30's. They have stayed there since with a small swing to 38, and down to 32 last week. I'm sure thankful that I'm not transfusion dependent but feel a little like I'm doing acrobatics without a net since I'm off Prograf-- I went to Prograf because Cyclosporin caused tremors, sleep problems, diarrhea and fatigue. The Prograf seemed a lot better when I started it in November during the ATG, but has become difficult to tolerate at even a 1 mg twice a day level. I'm so glad you mentioned the magnesium deficiency as cramps are an ongoing problem and the doc hasn't mentioned additional magnesium. Sleep, mild tremors, loss of taste, and fatigue were the biggest problems with Prograf. I've been off it for only 3 days and have more energy, haven't needed daytime naps, and sleep seems to be improving. Since I never got up to a therapeutic level, he didn't seem reluctant to take me off of it and I'm very happy. My quality of life, though diminished, is better now without the Prograf and I don't think the odds would be in favor of my seeking aggressive treatment, yet. I haven't had any tests since going off Prograf last week. I get a BMB on Friday, but don't think they will do another CBC that soon. I will see doc in 3 weeks to review the BMB results and am sure they will be taken then. My usual schedule has been to get CBC drawn every 3 weeks so I should get some baseline numbers to look at.
If you follow up with Dr. Young at NIH, I'd sure be interested in what study they recommend. I live in Atlanta and moving to MD for the duration of the study would be difficult, but I'll have to do something if numbers start down. I'll just keep my chin up and hope for stability for now. I'm so glad to have local doctors whose egos allow them to say they have run out of ideas for now rather than putting me thru another ATG. I'll let you know what future numbers indicate.
Thanks and good luck,
Flyguy AKA Ron

[Gloria J]

Hello Ron and Susan,

I'd like to chime in with Lisa and Hopeful on their advice to give the immune suppression therapy time to work, and not jump to transplant.

I, too, went through Horse ATG in Apr '08, and did not have a 'robust' response at six months - I was still getting transfusions every three or four weeks. But, by the one-year mark, they were two months apart, and the fifteen-month mark was my last transfusion. Last week, my Hgb was 12.1, ANC 2.06, and Platelets at 65K - not spectacular numbers, but certainly numbers with which I can function very well.

I know how difficult it is to live with low numbers constantly, the worry and despair is debilitating at best. But time is your ally, and the risks, at any age, associated with bmt would definitely encourage me (if I were in your situation) to give it more time.

On another note, I found that Magnesium definitely helped with leg cramps, but it was a fine line between enough to stop the cramps, and too much giving me stomach issues. I was lucky enough to tolerate the Cyclo well, but I would guess that some of the other symptoms you're experiencing are not just from the Prograf, or the Cyclo. Fatigue is classic with low Hgb, and the diarrhea could be from too much Magnesium. Are either of you on Prednisone also? That med alone will cause untold miseries!

Feel free to contact me, I'd be happy to share my ATG experience.

Good luck to you both, and hang in there, there are many of us out here who didn't respond in six months, but did approve over time. Our bodies don't know deadlines, and they're trying desperately to heal - give them the time to do that.

Best wishes,
Gloria

[flyguy]

Hello Ron and Susan,

I'd like to chime in with Lisa and Hopeful on their advice to give the immune suppression therapy time to work, and not jump to transplant.

Good luck to you both, and hang in there, there are many of us out here who didn't respond in six months, but did approve over time. Our bodies don't know deadlines, and they're trying desperately to heal - give them the time to do that.

Best wishes,
Gloria

Hi GloriaJ,
Thanks so much for your suggestions and interest. I see that you are medication free now and am so happy for you. It's so true that health is a relative thing. Your family doc would be upset with platelets in the 60's but having been far lower than that while sick makes us appreciate getting closer to normal.
I'm a bit over 9 months since ATG with solid, low numbers and would be surprised but happy for it to kick in now. I'm certainly not going to jump into a BMT as it's too risky, at least for now. I feel more boost in energy from getting off the Prograf than I ever did from the PRBC transfusions after ATG, but it won't show up in blood numbers, I bet. I get a BMB tomorrow AM and hope some treatment options turn up from the results. It's funny how you go from dreading tests to hoping something will show up!
Thanks for the magnesium tip. My cramps seem to be better the last couple of days with the combination of 5 days off Prograf and addition of magnesium supplements once a day. No diarrhea either. I think the immune suppressant drugs do a lot to our bodies. I've not needed a daytime nap since being off Prograf so it was the culprit as much as the AA, I guess.
Good luck on your remission and thanks for the help. BTW, does your hospital have a cancer wellness program? Mine does and it's wonderful for helping with anxiety and emotional issues that AA and cancer generate.
Thanks,
Ron

[susansr]

Susan, it's kind of a Catch-22 situation for doctors. On the one hand, they know that acting as early as possible may increase your odds for a successful transplant. On the other hand, waiting may save you from having to go through it at all. It's a gamble, though, so they just have to evaluate your numbers and try to guess where they'll go from here. What you have to keep reminding yourself, though, is that medical professionals are looking at odds and comparative "success rates", and usually not on the effect the course of treatment is going to have on your life. In their minds, a chance at full recovery may seem preferable to a life with lower than normal counts. Whether that is true for you on a personal, emotional or financial level is something only you can answer, but it is a question that must be addressed. Don't just assume they know what's best for you-- they don't know your life.

In order to even begin to make such a decision, however, you'll need to know if you have a suitable donor. Do you have a sibling match? If so, that may help weigh the argument in favor of BMT, but if not, I'd explore other options. Successes in MUD BMTs have increased in recent years, and they are being done on older patients now than would have been considered a few years ago, but it's still a rough road to travel. If you do decide to go that route, I'd look for a transplant center with plenty of experience and a good track record for AA patients. There are usually many snap decisions that must be made during the process, and a transplant team's expertise can make a huge difference in the outcome.

When you say "transfusion-free for 12 weeks", do you mean you still are? You don't give your Hgb, but with Plts in the 30s you should be okay there. If you're not showing any signs of relapse, I'd be inclined to wait a while longer. Counts can sometimes plateau and then start to creep up again, particularly if you don't attempt to taper off the cyclosporine too soon. If they're really "stuck", a second round of ATG may help to unstick them. Even if it doesn't, there are numerous people here who have simply learned to live with lower counts. It's not ideal, but as long as you're not needing transfusions and you are exercising some basic common sense you can have a decent life.

My husband's doctor started talking BMT at some point after his second ATG, but we wanted to wait. I'm glad we did, because his counts have continued to rise, albeit slowly. His Hgb reached normal range after a couple of years, and his Plts have been in hovering in the 100k range for the last couple of years. He feels fine and has a normal life, whereas if he had a BMT, even under the best of circumstances he would most likely be unable to work on our farm for a few years, which for him would be intolerable (not to mention bankrupting). It's an individual choice, I only bring this up as an example of the types of things you need to consider.
Lisa: you are so right about the odds game and everything you stated makes so much sense. Yes I will continue to wait out this time. Had my blood drawn yesterday; platelets inc to 31,000 but Hct is dropping slowly to 26.6; I had been transfusion-free for platelets for 4 months now but did need 1 transfusion of rbc's; doc said this is okay as long as I only need rbc's 4x/yr.
I do not have a sibling match but there are 22 possible matches for me from unrelated donors. won't worry about this now, though. do appreciate your thoughts. glad to hear your husband is hanging in there pretty well.

[susansr]

Hello Ron and Susan,

I'd like to chime in with Lisa and Hopeful on their advice to give the immune suppression therapy time to work, and not jump to transplant.

I, too, went through Horse ATG in Apr '08, and did not have a 'robust' response at six months - I was still getting transfusions every three or four weeks. But, by the one-year mark, they were two months apart, and the fifteen-month mark was my last transfusion. Last week, my Hgb was 12.1, ANC 2.06, and Platelets at 65K - not spectacular numbers, but certainly numbers with which I can function very well.

I know how difficult it is to live with low numbers constantly, the worry and despair is debilitating at best. But time is your ally, and the risks, at any age, associated with bmt would definitely encourage me (if I were in your situation) to give it more time.

On another note, I found that Magnesium definitely helped with leg cramps, but it was a fine line between enough to stop the cramps, and too much giving me stomach issues. I was lucky enough to tolerate the Cyclo well, but I would guess that some of the other symptoms you're experiencing are not just from the Prograf, or the Cyclo. Fatigue is classic with low Hgb, and the diarrhea could be from too much Magnesium. Are either of you on Prednisone also? That med alone will cause untold miseries!

Feel free to contact me, I'd be happy to share my ATG experience.

Good luck to you both, and hang in there, there are many of us out here who didn't respond in six months, but did approve over time. Our bodies don't know deadlines, and they're trying desperately to heal - give them the time to do that.

Best wishes,
Gloria
Gloria: thanks so much for your supportive comments. I just don't get it how your doctors knew to just give you time and not jump to conclusions that the ATG was or was not working considering you still required transfusions, maybe not as frequently, and your numbers were rising ever so slightly. It seems like their interpretations all vary so much. Lucky for you things have progressed fairly well. I am going to wait 6 more months before we decide anything else. Docs don't feel 2nd dose of ATG would be useful; that I agree with.
I take magnesium for the cramps but worst side effect from tacrolimus for me is the tremors. Can't stand living with the shakes.

By the way, when I was diagnosed with AA I also was diagnosed with celiac disease, another autoimmune disease. Transplant doc stated that would be eliminated if I had a BMT. So, possibly 2 good things could come of this procedure. Kind of tempting for me. Maybe.

[Lisa V]

Susan, have you considered trying Procrit or one of the other EPO drugs to help raise your red count? It often doesn't work for AA patients, but it did work for my husband, so it might be worth a try.

[susansr]

Susan, have you considered trying Procrit or one of the other EPO drugs to help raise your red count? It often doesn't work for AA patients, but it did work for my husband, so it might be worth a try.
I am umfamiliar with what EPO drugs even are; could you enlighten me, please. Doc never mentioned anything like that. Thanks!

[susansr]

Hi GloriaJ,
Thanks so much for your suggestions and interest. I see that you are medication free now and am so happy for you. It's so true that health is a relative thing. Your family doc would be upset with platelets in the 60's but having been far lower than that while sick makes us appreciate getting closer to normal.
I'm a bit over 9 months since ATG with solid, low numbers and would be surprised but happy for it to kick in now. I'm certainly not going to jump into a BMT as it's too risky, at least for now. I feel more boost in energy from getting off the Prograf than I ever did from the PRBC transfusions after ATG, but it won't show up in blood numbers, I bet. I get a BMB tomorrow AM and hope some treatment options turn up from the results. It's funny how you go from dreading tests to hoping something will show up!
Thanks for the magnesium tip. My cramps seem to be better the last couple of days with the combination of 5 days off Prograf and addition of magnesium supplements once a day. No diarrhea either. I think the immune suppressant drugs do a lot to our bodies. I've not needed a daytime nap since being off Prograf so it was the culprit as much as the AA, I guess.
Good luck on your remission and thanks for the help. BTW, does your hospital have a cancer wellness program? Mine does and it's wonderful for helping with anxiety and emotional issues that AA and cancer generate.
Thanks,
Ron
Dear Ron,
Hope the bm biopsy went ok. So glad to hear how much better you are feeling being off prograf. Do your docs think your numbers are stable enough to be off of drug? You know I'm in same boat of consistent low numbers, yet remaining above needing transfusions. Please inform me what their suggestions are for the future. My docs have agreed upon idea of waiting another 6 months before any other procedures. Good luck, SusanSR

[Lisa V]

Susan, EPO stands for erythropoietin, which is what the kidneys produce to help manufacture red blood cells. There are several growth factor medications (Procrit, Epogen and Aranesp are among the better known ones) which can be given as injections to help boost your erythropoetin level.

The thing is, many AA patients often already have an overabundance of EPO, since the kidneys tend to go into overdrive trying to replace those missing RBCs. For that reason, doctors often don't think to try it with AA. Our doc tried Procrit on Ken just to see if it would do any good, and was actually kind of surprised when it seemed to be helping. It wasn't immediately clear, however, whether his counts were simply rising from the ATG or from the Procrit, so we tested it out by stopping the injections for a while. The growth factors are extremely expensive, so it was important for us to make sure it was really worth it! It definitely did make a difference, and kept him above tx level for a couple of years while his counts recovered.

Even with the shots his Hgb was still lower than normal to start (in the 9s), but once it got up to 12.5 we started weaning him off it by reducing his dosage, and then the frequency, and finally stopping completely. His last shot was two years ago, and he's been able to maintain Hgb above 13.0 on his own since then. Of course he's still taking a (fairly low) maintenance dose of cyclosporine, so that helps too.

BTW, our hem/onc considers Hgb to be the only really important RBC to measure, since that is what affects your oxygen-carrying capacity. If my understanding is correct, Hct has more to do with volume. It will likely go up and down too when your Hgb does, but by itself I don't think it has as much impact on the way you feel or function.

In any case, something to think about. As I say, it doesn't work for everyone, but you never know unless you try it.

[Laura]

I tried EPO but it really didn't do anything for my HGB/RBC's. After awhile they did test my EPO level in my body and it was over 14,000....WAY high, just as was said, my body along with the EPO was overcompensating for the low HGB but my body just wasn't doing anything with it.

Laura

[flyguy]

Dear Ron,
Hope the bm biopsy went ok. So glad to hear how much better you are feeling being off prograf. Do your docs think your numbers are stable enough to be off of drug? You know I'm in same boat of consistent low numbers, yet remaining above needing transfusions. Please inform me what their suggestions are for the future. My docs have agreed upon idea of waiting another 6 months before any other procedures. Good luck, SusanSR

Hello again Susansr,
Thanks for the questions. The BMB went well last Friday and I opted for twilight anesthesia and am so glad I did. I've watched the procedure on Youtube and it seems barbaric. Anyway it will be two weeks- August 27th before I see my hematologist and get the results and we will try to come up with a plan. The nurse gave me a copy of my CBC drawn before the BMB and my HG had dropped from 9.1 to 8.6 in one week and platelets from 32 to 31. She said that standard procedure is to transfuse packed red blood cells when HG was 8.5 or lower. It seems like I'm going in the wrong direction but will get another CBC before doc's visit on the 27th. I looked back at my blood results and my numbers are lower than they were when I had the ATG in Nov.
I'm not really sure whether the doc is happy with taking me off Prograf or not. I asked for a 2 month holiday and he said to go off it altogether. Either way it's not even 2 weeks that I've been off it now and I feel better regardless of the HG numbers. I can't even imagine how others tolerate the dosages of 10 mg to 20 mg twice a day.
The only suggestions doc had two weeks ago were to investigate NIH clinical trials and as a last resort look up BMT studies. I have no donor so that is definitely a last resort. The NIH studies were all in Maryland and seemed to be trying stuff I've been on. If I don't become transfusion-dependent I can tolerate things as they are, but there is no guarantee things won't change. I guess that's life! Has your doctor made other suggestions for you? How much Prograf were you on and how did it affect you. Thanks for staying in touch,
Ron

[Hopeful]

Hi Ron,

I don't think there is a standard for transfusing RBC's. 8.5 seems pretty high to me, but everyone is different. My center dictates RBC transfusions by how you feel. The longer that you can hold off from getting them the better!

[susansr]

Susan, EPO stands for erythropoietin, which is what the kidneys produce to help manufacture red blood cells. There are several growth factor medications (Procrit, Epogen and Aranesp are among the better known ones) which can be given as injections to help boost your erythropoetin level.

The thing is, many AA patients often already have an overabundance of EPO, since the kidneys tend to go into overdrive trying to replace those missing RBCs. For that reason, doctors often don't think to try it with AA. Our doc tried Procrit on Ken just to see if it would do any good, and was actually kind of surprised when it seemed to be helping. It wasn't immediately clear, however, whether his counts were simply rising from the ATG or from the Procrit, so we tested it out by stopping the injections for a while. The growth factors are extremely expensive, so it was important for us to make sure it was really worth it! It definitely did make a difference, and kept him above tx level for a couple of years while his counts recovered.

Even with the shots his Hgb was still lower than normal to start (in the 9s), but once it got up to 12.5 we started weaning him off it by reducing his dosage, and then the frequency, and finally stopping completely. His last shot was two years ago, and he's been able to maintain Hgb above 13.0 on his own since then. Of course he's still taking a (fairly low) maintenance dose of cyclosporine, so that helps too.

BTW, our hem/onc considers Hgb to be the only really important RBC to measure, since that is what affects your oxygen-carrying capacity. If my understanding is correct, Hct has more to do with volume. It will likely go up and down too when your Hgb does, but by itself I don't think it has as much impact on the way you feel or function.

In any case, something to think about. As I say, it doesn't work for everyone, but you never know unless you try it.

Thanks for the valuable info. will discuss with the doc.

[susansr]

Hello again Susansr,
Thanks for the questions. The BMB went well last Friday and I opted for twilight anesthesia and am so glad I did. I've watched the procedure on Youtube and it seems barbaric. Anyway it will be two weeks- August 27th before I see my hematologist and get the results and we will try to come up with a plan. The nurse gave me a copy of my CBC drawn before the BMB and my HG had dropped from 9.1 to 8.6 in one week and platelets from 32 to 31. She said that standard procedure is to transfuse packed red blood cells when HG was 8.5 or lower. It seems like I'm going in the wrong direction but will get another CBC before doc's visit on the 27th. I looked back at my blood results and my numbers are lower than they were when I had the ATG in Nov.
I'm not really sure whether the doc is happy with taking me off Prograf or not. I asked for a 2 month holiday and he said to go off it altogether. Either way it's not even 2 weeks that I've been off it now and I feel better regardless of the HG numbers. I can't even imagine how others tolerate the dosages of 10 mg to 20 mg twice a day.
The only suggestions doc had two weeks ago were to investigate NIH clinical trials and as a last resort look up BMT studies. I have no donor so that is definitely a last resort. The NIH studies were all in Maryland and seemed to be trying stuff I've been on. If I don't become transfusion-dependent I can tolerate things as they are, but there is no guarantee things won't change. I guess that's life! Has your doctor made other suggestions for you? How much Prograf were you on and how did it affect you. Thanks for staying in touch,
Ron

Hey Ron: glad to be communicating with someone with such similar numbers.
My doc uses the Hct for deciding if I need RBCs; I am close to requiring a tx;
I'm hovering at 26.6.; while my Hgb is 9.4 and platelets at 31,000.

I remain on tacrolimus 20 mg/day. I truly wonder how it is helping since my numbers have been at a plateau for 3 months now. Who knows if it was removed what would happen. We are just sitting tight now to see if anything moves up. Otherwise, its either NIH or BMT. Keep me informed, SusanSR

[flyguy]

Hi Ron,

I don't think there is a standard for transfusing RBC's. 8.5 seems pretty high to me, but everyone is different. My center dictates RBC transfusions by how you feel. The longer that you can hold off from getting them the better!

Hi Hopeful (I like your name),
Yes, I agree about set levels for transfusions. I see two hospitals and one doesn't think of platelets unless they are less than 20 and the other has given them at 32. If they transfused by how I feel, I'd be getting a lot of blood ! When I did get PRBC following (h) ATG in November last year it never made me feel better but got my HG up to 10.6 at one point. Single and double doses of Procrit didn't effect HG levels either.
I sure agree that the less the better. Getting off Prograf has given me more energy than any transfusion I've had, in spite of lower HG number. This is a confusing combination of Mind and Body interactions. Guess this is one of those times to just wait and hope for a break or new treatment idea.
Thanks for your input and good to meet you.
Ron

[Laura]

I have seen centers do either transfusing RBCs how 1) how you feel 2) lower than 8.0. I have some use both of these standards. Platelets at Mayo Clinic don't get transfused if you are less than 10 or 20. It depends on the person and circumstances. THey used 10 for my threshold at first. Then when I had bleeding issues they kept it above 40.

Laura

[Hopeful]

Hi Flyguy (Do you like to fish?) -

I think "how you feel" is a very relative thing, since most people with bone marrow failure always feel tired. For me, I would wait until my HGB was below 7.5, and I felt really shakey. For platelets, my center looks for signs of bleeding. So, I would hold out until under 12. Once you get on the transfusion bandwagon, things can go downhill fast. So try to avoid it as long as you can!

It seems like us "older" people with AA (i.e. those of us older than 40), require longer immune suppressant therapy to achieve a response and sustain it. Possibly because cell division slows down as you age???

I kind of look at IST as analogous to Bush's war on terror: ATG is the "shock and awe" phase, while continued Cyclosporine/Prograf is keeping down the insurgents while the marrow tries to heal itself. If you stop this phase too quickly, the insurgents take over again and you are right back where you started. The question is...when do you remove the troops?

[flyguy]

Hi Flyguy (Do you like to fish?) -

I think "how you feel" is a very relative thing, since most people with bone marrow failure always feel tired. For me, I would wait until my HGB was below 7.5, and I felt really shakey. For platelets, my center looks for signs of bleeding. So, I would hold out until under 12. Once you get on the transfusion bandwagon, things can go downhill fast. So try to avoid it as long as you can!

It seems like us "older" people with AA (i.e. those of us older than 40), require longer immune suppressant therapy to achieve a response and sustain it. Possibly because cell division slows down as you age???

I kind of look at IST as analogous to Bush's war on terror: ATG is the "shock and awe" phase, while continued Cyclosporine/Prograf is keeping down the insurgents while the marrow tries to heal itself. If you stop this phase too quickly, the insurgents take over again and you are right back where you started. The question is...when do you remove the troops?

Hi Hopeful,
Thanks for the ideas and suggestions. First of all, I do like to fish, but am a pilot and fly when I feel "up" to it. You are right about the slippery slope of transfusions. They also make BMT more risky I hear. It's true about AA making you feel tired all the time so it isn't much of a diagnostic marker for me. I guess I'm just sort of confused about the whole treatment process that I've gone thru. First CSA for 9 months, ATG for 12 days because of serum sickness- and then Prograf for 7 months up till a couple of weeks ago. Blood numbers are stable and almost exactly where they were when we started in 08.
I was certainly shocked and awed by ATG (h), but it didn't seem to do the same to the AA. I'm not at all sure the Prograf had any effect other than increasing the fatigue. Since I got off it I have stopped needing 3 hour afternoon naps and can do short bicycle rides. Being a LOT older than 40 (69) might create different concerns for my doctors. I guess I'm basically Watch and Wait since I'm off Prograf and only taking Acyclovir now. Next week I get BMB results back and hope some new ideas arise.
Thanks for your knowledge in this area. I don't want to have to learn everything by having the problems first.
Ron

[Gloria J]

Hi Susan and Ron,

I'm glad to hear you're both still hanging in there. Your counts can certainly drive you crazy, especially when they seem to be only moving south.

My hematologist only looked at Hgb also when deciding on a transfusion, but he didn't like my Hgb to go lower than 8.5. However, as my body got more used to lower levels, 8.5 felt pretty good, and I convinced him to let me wait until it hit closer to 7 before a transfusion. He never gave much credence to the hematocrit. (along those lines, Susan, I'd feel pretty happy about 9.4!).

Of course, everyone feels differently at different levels, and I've always felt pretty strongly that one should be allowed to decide for oneself (I agree, Hopeful, hold off) when a transfusion is needed. There are too many other problems associated with frequent transfusions - the dreaded iron build-up, and consequent need for chelation (with its own set of problems), risk of development of antibodies (making it harder to find compatible blood). It's as though we are constantly playing dominoes, and waiting for them all to collapse - but have some faith in your ability to stay in the game.

On another note, Ron, the cancer center where I go does offer wellness services, one of which is two sessions of Reiki. I did take advantage of that (even though it's supposed to help boost your immune system - counter-productive for someone using IST), but, darn, did it make me feel great!

Try not to obsess about your counts, a bit up or down doesn't mean so very much in the scheme of things, and it's really all about how you cope with the counts that you have.

Be strong,
Gloria

[flyguy]

Hi Susan and Ron,

I'm glad to hear you're both still hanging in there. Your counts can certainly drive you crazy, especially when they seem to be only moving south.

On another note, Ron, the cancer center where I go does offer wellness services, one of which is two sessions of Reiki. I did take advantage of that (even though it's supposed to help boost your immune system - counter-productive for someone using IST), but, darn, did it make me feel great!

Try not to obsess about your counts, a bit up or down doesn't mean so very much in the scheme of things, and it's really all about how you cope with the counts that you have.

Be strong,
Gloria

Hi GloriaJ,
You have a good attitude and outlook on your situation. Thanks for your suggestions. We sure can get obsessive over numbers and I can't usually guess which way my numbers are going to be by how I feel. I did a 10 mile bike ride last week the day I got the 8.6 HG report. If people tell you you are sick, we usually try to oblige them!
Having two doctors isn't great for communication either. I always take results from one doc to the other, but their own communication is something I can't control.
We are so fortunate to have Wellness Centers. Your Reiki class sounds interesting. We have yoga, Mindfulness, guided imagery, Chi Gong, and many other classes. It's a great place for finding our spirit and meeting others sharing their strength and anxieties with us. It's a shame that AA is so rare. I've never met anyone in person with it. I feel like an orphan around so many with lung, prostate, breast, and ovarian cancer at our Center. We have food preparation classes and nutrition counselors who talk up the Omega 3 foods and immune- enhancing diets and it's embarrassing to say that I need the opposite- including Liver, pork and beef! I agree that our attitudes can make or break our physical limitations. . I guess it's just one day at a time and trying not to borrow tomorrow's troubles till we get there.
Ron

[Gloria J]

Ron,

I love that line - if people tell you you are sick, we usually try to oblige them! How true!!

I never met anyone either, until I went to the AAMDS conference - what an amazing experience! You should definitely try to attend one, or at the very least, a one-day local event - very worthwhile.

Keep well,

Gloria

[flyguy]

Ron,

I love that line - if people tell you you are sick, we usually try to oblige them! How true!!

I never met anyone either, until I went to the AAMDS conference - what an amazing experience! You should definitely try to attend one, or at the very least, a one-day local event - very worthwhile.

Keep well,

Gloria

Hi Gloria,
Thanks for the information on AAMDS conferences. I'll have to look one up and see if I can go. I guess we are a rare bunch. I've only half joked with my doctors and said that we could hold an AA convention in Atlanta under a bus stop shelter! I've been to a Healing Journeys workshop and it was incredible but didn't see anyone else with AA.
Re the people who oblige us by getting sick-- In my youth (many, many years ago) we used to play a terrible trick on the last person to report for work. We would all independently tell him/her that they looked a little ill, and asked how they felt. Usually they checked out sick by noon! Lets you know how important it is for our docs and support teams to be positive, doesn't it?
Keep smiling,
Flyguy

[pvinod]

still my daughter count low, H-ATG on Dec 2010 but still not response, should we have think for BMT?

For ATG response one big doubt in our mind. We feel due to lower dose of CSA we do not got the response. Our doctor start CSA from 10th day of ATG. Set dose 0.3 ml, her weight is 11 kg. After 3 month doctor made CSA level and that one only 63. so doctor increase dose 0.5 ml.

We believe due to that lower dose of CSA after ATG my daughter have no response.

As per ATG theory when we took the ATG, lymphocytes kill and for again that bad T lymphocytes does not grow CSA given. now in my daughter case when we took the ATG almost all lymphocytes kill but due to late start of CSA and lower dose of CSA that bad T lymphocytes grow back , hence still not response.

Please give us suggestion. If so do we need to take the chance of second H-ATG and start CSA at same day of ATG and with correct dose?

[Hopeful]

Hi pvinod,

This is such a difficult decision, but of course no one can make this decision for you. ATG alone used to be the standard of care for AA patients. The success rate was significantly lower than ATG in combination with cyclosporine. I can see your point that she may not have had the full effect of of the combination IST if cyclosporine was at sub-therapeutic levels initially. I do not know how the dosing is done for pediatric patients, so I can't comment on that.

In any case, action is needed now to prevent further progression of the disease. Make sure you talk to the transplant doctor as well, to full understand this option.

[Karenish]

I am now in my 7th month post rabbit ATg and immediate cyclo - docs were recently discussing looking at possible bmt because they reckon it hasn't worked, I said whoa there big fella's! and here is why.
I have felt really really well since the ATG, I have returned to work as an occupational therapist, do not get tired, have not had an illness since about 5 years ago when i got the flu. My whites and neuts have climbed to above critical level but nowhere near full counts. hb and plates have also stayed low and i have had to have plates every 10 days and red every 3rd week. (now on exjade) I have been adamant for some time now that they are pushing too hard saying it hasn't worked......recent bmb may show which i get the results for next tuesday....but heres the thing.
Like a previous poster said...i see that there has been a war of terror on my poor little bone marrow, for probably nay on 5 years if it was that virus that caused it. No way is my marrow going to all of a sudden spring into life just because those rogue T cells have been diminished. I feel (and i will hold my hands up if i am wrong) that my body knows what it is doing, I have now completed week 3 without a transfusion, yes if I climb my stairs the old heart beats quite quickly but with a few deep breaths it soon calms down and a normal beat ensues. I do not get tired, and I do not get sick.....something tells me something is working. The only side effects I have are from northesterone (to stop monthly bleeds) and the itching is stopped by a piriton tablet! I get mild cramps in my legs and feet but manage to keep them under control. My gums are sore from the cyclo, but i mouth wash frequently and once my counts have increased i will get them sorted. I have refused to get hung up on those numbers any longer and have asked the chemo nurses to only phone me if I need a transfusion, with the belief that no news is good news, and I know when there is something wrong.....I did when I was diagnosed...52 years on this planet gives you that knowledge really. I do find that trawling the internet can be an incredibly scary thing to do. So my advice to anyone would be...look at your quality of life now. If my counts climb a little and I continue to be able to function without transfusions then i dont care what the total counts are. I can eat in restaurants, I can go shopping in busy supermarkets at their busiest times, I can work, I can handle animals in fact there is nothing I cant do except of course extreme sports or juggle with pen knives. So, for me, BMT will be that absolutely the last resort, it will be when all other options have gone and my life is on the line...but somehow...I reckon that little guardian angle who has looked after me all my life will make sure I beat this disease and it has been a temporary but necessary blip in my journey through life. I do appreciate that not everyone lives in my little pollyanna world, but i am incredibly happy in it, and this disease does not intimidate me one bit - its picked on the wrong cookie here! (grin) xx