ATg response

[BerryP]

Hi i'm in England and I had rabbit ATG November 2010. Tolerated it well, no particular problems, some shaking on ciclosporin when dose was 300 per day. Had 2nd BMB in May and bone marrow back to what it was in September 2010. Thought they would just give me more ATG but they are consulting elsewhere to see if there are other treatments or combos available. I go end of next week so if I hear anything new I will post it here. I would say that they seemed to look for a response from 3 months onwards, but not before that. All the Doctors seemed to think that before then any response was too up and down to be reliable. It is very hard with AA to sit and wait, especially when you are worn out. Today I had lead bones and a dodgy arm but tomorrow I might feel a bit brighter. Does anyone else notice they have gone a bit dazed and confused. I lose stuff, burn myself, fall over, unable to drive and very jumpy and nervy. Very jealous of you Americans who are given your blood work whereas lots of times we get to guess! Still don't know my genetic fault, nor my pnh clone size. I think knowledge is a good thing, and it would certainly help folks make decisions about returning to work, planning etc. Every day is different and sometimes we all need to be a bit sad, usually that means you are not sad the next day. Hope that works for you, and give it some time.

[Neil Cuadra]

Originally Posted by BerryP

Very jealous of you Americans who are given your blood work whereas lots of times we get to guess! Still don't know my genetic fault, nor my pnh clone size.

Are you talking about King's College Hospital? If so, I suggest that you talk to the Patient Advice and Liaison Service (PALS) and explain that you are a well-informed patient and want regular access to your own test results. Actually, the hospital suggests that before going to PALS you ask at reception about any concerns you have, or ask to talk to a "senior staff member", but I suspect that's not going to solve the problem in general.

In my experience, the sharing of test results mostly depends on traditions and habits of the institution or doctor, not on an explicit policy to restrict access to test results. I've found that squeaky wheels get the test results they want. And if that doesn't work, use the formal procedure (see "How can I see my records?").

My wife "trained" her hematologist so that at the end of the appointment the doctor instructs the nurses to give us a copy of the latest labs. It was just a matter of consistently asking until it became a habit.

[Karenish]

Originally Posted by BerryP

Hi i'm in England and I had rabbit ATG November 2010. Tolerated it well, no particular problems, some shaking on ciclosporin when dose was 300 per day. Had 2nd BMB in May and bone marrow back to what it was in September 2010. Thought they would just give me more ATG but they are consulting elsewhere to see if there are other treatments or combos available. I go end of next week so if I hear anything new I will post it here. I would say that they seemed to look for a response from 3 months onwards, but not before that. All the Doctors seemed to think that before then any response was too up and down to be reliable. It is very hard with AA to sit and wait, especially when you are worn out. Today I had lead bones and a dodgy arm but tomorrow I might feel a bit brighter. Does anyone else notice they have gone a bit dazed and confused. I lose stuff, burn myself, fall over, unable to drive and very jumpy and nervy. Very jealous of you Americans who are given your blood work whereas lots of times we get to guess! Still don't know my genetic fault, nor my pnh clone size. I think knowledge is a good thing, and it would certainly help folks make decisions about returning to work, planning etc. Every day is different and sometimes we all need to be a bit sad, usually that means you are not sad the next day. Hope that works for you, and give it some time.

Hiya fellow UK..er....I am being treated at Stafford and I cannot fault my team, results are phoned over to me in the afternoon after blood test. Your hospital should be following the protocol given to them by London in so much that if the first doesn't work they give you a second dose which again is successful I believe in 70% of folk.
My brain is not too good on what day of the week I am on and names!!! but then I am 51 and normal forgetfulness does happen when middle age creeps up. Cyclo has many side effects, I get a constant ache in the shoulder blades and hips...funnily enough this is where marrow makes our blood!!! and hairy??? I have side burns like Amy Winehouse!! and I am blonde so I may have to dye them!! I can get shaky periodically but the nervy bit only lasts about an hour luckily. I am attending work already as my whites and neuts took a jump up 1 this week and doc reckons this brings me above critical and knows that I love my job so much that a return will be better for my mental health and wellbeing! You have a great attitude which i think is half the battle with this disease I for one allow myself those duvet days and I can always guarantee that by the next day it has passed. I have fought all my life for happiness and blummin A A is NOT going to win either!!! but I am allowed to lick my wounds now and then (grin). Keep us informed, I think a sensible statement was made earlier, there are many many types of bone marrow failure, with many many causes which nobody knows, and we are all unique, some may respond a week later, some up to 2 years, and in that we keep the faith! good luck and keep in touch xxxx

[squirrellypoo]

BerryP, I have to echo what Neil said - they absolutely should be telling you your CBC every time, and every result from your BMB. I've been at St Thomas's, Guy's, and King's, and they ALL have given me my results every single time. And if you can't wait around that day, or til your next appointment to discuss, I've had mine given over the phone or email many, many times, too.

I'm really not seeing any difference in care with the NHS and what the Americans on here are getting (apart from us not having to worry about insurance men, that is...).

[pvinod]

Hi ALL,

my 4 years daughter suffering from Aplastic Anemia since April-2010. we took the ATG on December -2010. Today 6 month is over but still she is transfusion dependent.

she need the platlate every 5 day and blood every 21 days.

definitely her nutrophil is increase around 20 ,but after some days is down to 8. nutrophil is up and down.

she is on cyclosporine now. Please suggest.

[BerryP]

Hi, thanks to all for their advice and support. Saw hemotologist today with husband and his brain is turned on so we were able to get info. It is undoubtedly my fault that I did not get sufficient info before. Being dazed and confused has not helped. ATG not worked, and I think they consulted with London to see if I was eligible for bmt. Risks too high, 58 years old and Doc reckons mortality for over 60's is thirty percent. I have a small trisomy 15 genetic abnormality and no reaction in my bone marrow to ATG at all. Transfusions between 6 weeks and 12 weeks at moment and some improvement in platelets (up to 70) so can't grumble. But now the really good news! I can fly to Europe, nowhere with a malaria risk and nowhere that needs injections and they will give me blood before I go to boost me! How great is that! I can genuinely say this is the first day I have seen the docs and come out smiling. Now all i've got to do is get insurance. Doc also said good idea to retire, so big changes ahead. Thanks guys for seeing me through the sad days. Doc did also say not going to get better so got to live with what i've got. Absolute tonic and could have kissed a man who told me I was not getting better but that's how it took me. Giving me blood tomorrow even though hb 9 to boost me cos liver bit dodgy. They wanted to give me an ultra sound and I felt well enough to jib at that. Would be interested to hear if anyone else has trisomy 15 as there is little on it anywhere. I would echo what everyone told me, talk to your doctor, however much you worry, tell him how things are. As my doc said we can't treat you if you don't let us know how things are going. Good wishes to all.

[Karenish]

PBERRY:That is lovely that you are so happy!!! glad that you have had a good chat with your doc, it always helps. Your plates are heaps better than mine and you are having transfusions much less than I do currently. Enjoy your holiday and make it day the first day to the rest of your life xxx

[squirrellypoo]

Originally Posted by BerryP

Now all i've got to do is get insurance.

I can highly recommend Columbus Direct for travel insurance with AA/MDS - they've got a targeted online questionnaire for existing conditions and you get a quote then and there. They quoted me something like £50 to cover a fortnight in America last fall, and the specialist insurers made me ring up, speak to someone who had NO idea what MDS was, and then quote me £300 for the same trip. So yeah, I was very happy with Columbus! But also remember to get your EU medical cover card if you haven't got one already (I can't remember the exact name, but it's a little blue card the size of a credit card that you need if you require medical help on the continent).

I'm so happy you've got some positive news anyhow!

[maryotaber]

It actually took 9 entire months for me to respond to ATG! My doctor was even convinced that it just wasn't going to work, but he let me get through my last year at school and fortunately we did wind up seeing improvement! Don't lose hope

[Neil Cuadra]

Originally Posted by maryotaber

It actually took 9 entire months for me to respond to ATG! My doctor was even convinced that it just wasn't going to work, but he let me get through my last year at school and fortunately we did wind up seeing improvement! Don't lose hope

Hi maryotaber. It must have been very hard to wait so long for improvement.

Patients who are told that a response can take many months may still start thinking that they'll have to repeat ATG, go to transplant, enter a trial, etc. before they've given ATG sufficient time to work. Your experience is important for them to hear, even though like many patients your ATG success wasn't permanent.

[evansmom]

Unfortunately, it's hard to say for sure if it was a delayed response to the ATG, or a gradual improvement of the underlying condition on it's own, over time.

[Karenish]

Well, latest report from consultant is that my counts have not really budged much since ATG - so another BMB due second week in august - I reckon his is a bottom man (grin) so came home had a darn good cry and then thought, sod it, the fight goes on! I am still feeling well, no infections (in fact apart from this diagnosis I have not had so much as a bit of cold in 2 years!!) He said that he may be able to see from the biopsy if the marrow is recovering, in which case we will then be able to make some form of informed decision. I told him about this site and that one lady took 18 months to recover and he agreed that this is not totally ruled out, he wished he could give a time frame but he can't. But agreed that staying positive was half the battle. My dad died earlier today so I am hoping that he will now too join me in the battle to beat AA to a pulp as two of us against it are better than one!
Try to stay focused everyone who is going through what I am, together we are formidable!!! and another plus....I am now on a staged return to work!! my last bag of plates lasted just over 14 days which was a record so maybe ...just maybe .... xxx

[kellym]

Hi, karenish
I was just wondering how how you are doing now and if your counts are moving up. We are on the road to a transplant now.
I'm sorry to hear about your dad, I'm sure he is watching over you now xxx

[Susy]

I know we all have very different stories and responses to ATG. I go onto this website often to read all the stories and questions out there, in hopes of someone having the same or similar story to mine. I am looking for just a kernal of hope that my recovery is around the corner.

Here is my recent update. I had my third BMB 2 weeks ago. Doctor's were concerned with some of my counts (mostly my enlarged MCV and dropping HCT). My HG is stable at 8.4, WBC 2.1 Platelets 43. They suspected that they would find MDS - but instead they found no abnormal cells and my stem cells, which were <10% last Nov. were now 40%...but my counts haven't changed in the last two years.

So, how can my stem cells be 'close to normal' but there is no effect on my counts? Is it just a matter of time before they all kick in and work, it's been 8 months now since my ATG. Has anyone else had this experience?

Hoping there is someone out there that can shed any light on this?

[Karenish]

Originally Posted by kellym

Hi, karenish
I was just wondering how how you are doing now and if your counts are moving up. We are on the road to a transplant now.
I'm sorry to hear about your dad, I'm sure he is watching over you now xxx

still pretty much the same!!! although i did last 14 days with the last platelets and 4 weeks with the blood - still feeling well......but not looking forward to 2nd bmb, buried dad yesterday so now have the usual floods of tears and angry at this disease for not letting me spend more time with my dad....but hey ho...there will be a reason....keeping the faith xxx cant have transplant....no match and told too old!! cheeky beggers (grin) I am only 51!

[Susan]

Hi Gloria, just want to say I have AA and PNH too. I'm on Soliris too and PNH has been may main concern since Prednisone raised my plts from 24 to 150. Prednisone messed up my bones, bad osteoporosis, so went off it.

Platelets have been slowly falling for 2 years but still ok at 88. ANC varies from low of .6 to 1.5. Had kidney failure from hemolytic crisis, now much better. Cyclo and history of kidneys issues not a good mix though.