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

[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]

Originally Posted by 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?

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]

Originally Posted by 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.

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]

Originally Posted by 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

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