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  #1  
Old Sun Dec 12, 2010, 03:39 AM
Leung Leung is offline
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Response to ATG

Hi all,

I am new to this forum, but often visit this site. Thanks to all here who shared their knowledge and experience to support each other facing this dreadful disease. I posted in another forum last year about my niece with moderate AA trending towards severe phase. Since Dec last year, my niece needed RBC transfusion every 2 – 3 months, and she had ATG in Aug this year, now on cyclosporine. In the first week post ATG, her Hgb and neutrophil responded quite well, but Hgb then decline. Neutrophil sustained at above 2 initially for 1.5 months but then dropped sharply. Platelet only showed very little improvement. Has now reached the 4-month mark post ATG, still need RBC transfusion, neutrophil around 1.4 (pre-ATG 0.8-1.2) but higher when having fever, platelet between 27 – 37 (pre-ATG 18-27). Just trivial improvement so far. Doctor thought that her AA is likely autoimmune in nature, but such response to ATG is disappointing. Doctor mentioned lightly doing 2nd ATG, but not now, maybe next summer. We asked whether the interval between 1st and 2nd ATG will affect the chance of response in 2nd ATG. Dr. said no particular relation.

Dr. said to wait for 6 months after ATG. So now we can just wait and see whether there will be further improvement. Though I know response to ATG can be as late as 6 to 9 months, is such late response not common? By the time o f 6 to 9 months, there should be no more ATG in the body and the chance of responding is getting lower and lower? I would appreciate any advice/views and sharing, and any experience of slow but continuous improvement after ATG. My niece has no sibling match and has tested not Fanconi. Thanks.
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  #2  
Old Sun Dec 12, 2010, 02:47 PM
Lisa V Lisa V is offline
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Hi Leung, so sorry about your niece!

According to our doctor, the only benefit from a shorter length of time between ATGs is if you can do them within a month of each other. That way you can get a cumulative effect of the two together. Any longer than that, and the benefit is lost. That's why he started pushing for a second one after not seeing any improvement in my husband within the first month. Of course one month is too soon in most cases to see a response, so we wanted to wait, and eventually he did start to improve (tx-independant at 10 weeks).

Normally it is recommended to give it at least 6 months. Some responses do occur later on, but it is less common at that point. I don't really understand how it works either, since as you say, the ATG would no longer be in the system at that point. If your niece had not shown any response yet, I would say to give it at least six months. Since she did show an early response but has since declined, however, my feeling is that this may change the equation somewhat. Has anyone here had the experience of having counts rebound after a rise and drop like that? I'm wondering if that may have been all there is, in which case a second round might be better sooner rather than later. I'm just speculating, I'd welcome any input from someone with more experience.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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  #3  
Old Mon Dec 13, 2010, 01:43 AM
Hopeful Hopeful is offline
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Hi Leung,

Her ATG response seems similar to mine. A week after ATG, my HGB was at 11, but fell back down. I got my last RBC transfusion at 1.5 months post-ATG. My HGB slowly rose after that. Likewise, my ANC went up and then back down at 1.5 months. It took me 1.5 months post-ATG to be transfusion free for my platelets. They stayed in the 30k's for another 6 months. Then at around 7 months post-ATG, my counts began their sloowww rise. I have been on cyclosporine the whole time, and my doctors think my delayed response is because the cyclosporine is finally working, as the ATG is long gone.

My doctors also thought that my initial response to ATG was disappointing. I don't. I believe it killed off enough of the rogue T-cells that my marrow could start repairing itself, with the aid of cyclosporine.

I would wait the 6-9 months. Hopefully, she'll see an improvement soon. Is she still taking cyclosporine?
__________________
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #4  
Old Mon Dec 20, 2010, 12:53 AM
Leung Leung is offline
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Thanks so much for all your replies. Lisa, do you mind sharing more of your husband’s experience? What are the best levels of his blood counts after 1st ATG and when did he achieve such levels? Why did he need to receive 2nd round? How far apart were the two rounds ATG? Did your husband have much better and faster response to 2nd ATG compared with the 1st round? What are his blood counts now? Are both rounds horse ATG? Our doctor said it should make no difference whether it is horse or rabbit following 1st round of horse ATG.


Hopeful, thanks for your sharing. My niece is still on cyclosporine, but it seems that it has only slight effect so far. Her platelet has stayed in the range 30k to 34k for a month and it seemed to plateau at this level. In the latest reading 4 days ago, it has slightly risen to 39. Hope we can see gradual and continuous improvement. May I know your current platelet count and cyclosporine dosage? Did your doctor ever suggested doing 2nd ATG? Wish your platelet continue to rise. Have your HGB and ANC reached normal levels?
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  #5  
Old Mon Dec 20, 2010, 04:51 AM
Lisa V Lisa V is offline
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I don't mind sharing at all, Leung.

Ken never reached normal ranges following his first ATG, but he was tx-independant for about a year. His best counts were Hgb 10.9, WBC 2.6, Plt 29k, a little over a year after treatment. Perhaps he would have eventually normalized had he not attempted to taper off the cyclosporine. His doctor took him off it very quickly-- he went from 200mg/day to 100 for a couple of months, and then nothing. His counts started plummeting shortly thereafter, and resuming the cyclo by itself did nothing to stop it. He was soon back to being transfused every couple of weeks, so he had a second ATG 18 months after the first one.

His doctor felt that since he had shown a response to horse the first time, and hadn't had any serum sickness or other adverse effects from it, that it would be best to repeat the horse rather than switch to rabbit. That way we could keep the rabbit in reserve in case the horse ever stopped working. He did double the dose, however. The first round had been given over 5 days, and the second one was for 10 days. He responded more quickly the second time (tx-independant at 5 weeks compared with 10 weeks), and has reached much higher levels in both his red count and platelets this time. I'm sure part of this is because he hasn't attempted another taper (in doing another BMB during the relapse, they discovered a trisomy 8 mutation that they hadn't seen earlier, and there seems to be some evidence that those patients are usually dependant on cyclo indefinitely, so he's been taking it for over 6 years now).

His second ATG was in February '06, and he was also getting weekly procrit shots until his Hgb reached 12.5 a little over a year later. We gradually tapered the shots, and it has held up fine since then. Last count was 14.2. His platelets have continued to rise very slowly: 50k at 9 months, 100k at 32 months, latest count 132k. Our lab considers anything over 130k to be normal, and this month is the first normal reading he's had, nearly 5 years after treatment! His WBCs have been the least responsive line-- they didn't crash with the other two, but have never reached normal either. In the last couple of years his WBC has ranged between 2.9 and 4.0 (but will spike a bit more when he has a cold or infection).

I don't know how much of this is relevant to your niece, Leung, but I hope some of it helps.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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  #6  
Old Mon Dec 20, 2010, 05:29 PM
susansr susansr is offline
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Smile Response to ATG

Dear Leung,
My case sounds similar to your niece. I am 55 with moderate AA. In February 2010 I was treated with horse ATG, followed by an immunosuppressive drug similar to cyclosporine, tacrolimus. After 3 months, I became transfusion free from platelets, but still need RBCs every 2-3 months. My WBC count is normal.

So at 6 months my case was reviewed. Doc says I may be slow responder. My platelets never rose above 30,000 and still need the RBCs. And still taking the tacrolimus. So now we are discussing doing a 2nd round of horse ATG at my 1 year anniversary of 1st treatment. Not sure if this will be beneficial as my 1st response to ATG was disappointing. Theory is maybe I'll respond enough to also become transfusion free from RBCs and maybe kick up my platelet count to 50,000 which would be a much safer threshold than where its at now. So it is under debate.

Hope it is helpful reading another situation dealing with AA and treatment. Let me know what is being considered now for your niece.

Good luck, SusanSR
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  #7  
Old Tue Dec 21, 2010, 01:04 AM
Hopeful Hopeful is offline
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Quote:
Originally Posted by Leung View Post
Hopeful, thanks for your sharing. My niece is still on cyclosporine, but it seems that it has only slight effect so far. Her platelet has stayed in the range 30k to 34k for a month and it seemed to plateau at this level. In the latest reading 4 days ago, it has slightly risen to 39. Hope we can see gradual and continuous improvement. May I know your current platelet count and cyclosporine dosage? Did your doctor ever suggested doing 2nd ATG? Wish your platelet continue to rise. Have your HGB and ANC reached normal levels?
5k seems like a rise to me! At my last blood test, my platelet count jumped to 111k! Previously it was in the 90k's, so it may be a fluke. My ANC is normal and my HGB is low normal. My RBCs are slightly low. I am currently taking 175mg/day of cyclosporine.

My doctors tossed around the idea of a second ATG at 6 months, but weren't sure it was worth the risk since my response wasn't too dramatic the first time. At the time, they didn't think my platelets would get much higher than the 30k's. They also didn't think my response would last more than 10 months because of the MDS component. Needless to say, I'm cautiously ecstatic and hope I didn't just jinx myself by writing all of this!

Patience! Hope things continue to go well for your niece!
__________________
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #8  
Old Sun Jan 9, 2011, 06:21 AM
Leung Leung is offline
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Thank you all so much for your sharing. Susansr, your case is really similar to my niece. Are you now considering doing 2nd round ATG? Our doctor has not really talked about the next step. He said to wait for until 6 months post ATG. He lightly mentioned doing 2nd ATG before in response to our enquiry, but he seemed not too worried with my niece’s current counts, though the progress is not encouraging. It is now close to 5 months post ATG. Her ANC has more noticeable improvement (stay at around 2 for about a month) but platelets has recently dropped and has been hovering at 30+ for two months, and still need RBC tx. We have consulted another doctor who seemed of the view that if one starts responding to ATG, the rate of improvement should be quite quick. He also briefly mentioned repeating ATG, but no earlier than 6 month post 1st ATG. So we are now still “watch and wait”. I do not know whether increasing cyclosporine dosage can help (now 200 mg/day), and will ask our doctor in the next appointment. Hopeful, it’s nice to know that you continue to get improvements. This has given us a hope that perhaps my niece may be able to achieve slow but continuous improvements. Lisa, your sharing is useful. I wonder why your doctor doubled the dose in 2nd ATG. Isn’t it that there is a protocol, with the dosage somewhat calculated according to a patient’s body weight?
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  #9  
Old Tue Jan 11, 2011, 02:48 PM
Lisa V Lisa V is offline
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Quote:
Originally Posted by Leung View Post
Lisa, your sharing is useful. I wonder why your doctor doubled the dose in 2nd ATG. Isn’t it that there is a protocol, with the dosage somewhat calculated according to a patient’s body weight?
He got the same daily dose, Leung, just over the course of twice as many days. I wish I knew who our doctor consulted with who advised him to do this (I asked the name of the doctor, but he couldn't remember at the time, saying only that he was a specialist "in the Midwest". Perhaps Dr. Maciejewski at Cleveland Clinc? Just a wild guess.) At any rate, the advice that he got was that for every repeat ATG treatment, the length of exposure should be increased for best results. Therefore, if he were to do it again, it would likely be for 15 days, etc. I have never heard any one else say this, but it seemed to work fairly well for us.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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  #10  
Old Thu Jan 13, 2011, 11:50 AM
susansr susansr is offline
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Red face

Dear Leung: you stated that your niece is at 5 months post ATG; platelets hovering 30+, and still needing RBC tx. To me, from my experience, I was reevaluated at 6 months post-ATG, and with my platelets hovering 24+ and still needing RBC tx, to continue the "watch and wait". Platelets are the last component to rise and your niece at only 5 months post, seems to be heading in the right direction. Needing the RBC tx isn't great but is still acceptable at this early time. Hang in there, as difficult as it may be.

I am nearing one year post-ATG, and still in the same plateau; platelets values the same and needing RBCs every 2-3 months. Not to say this is ideal, but its my story. Always helpful hearing about others similar.

At this point we are in the talking stages of considering a 2nd round of ATG. Not sure when, how long, or any details. will keep you informed since it might give you some insight.
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  #11  
Old Wed Jan 19, 2011, 12:25 PM
Leung Leung is offline
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Quote:
Originally Posted by susansr View Post
I am nearing one year post-ATG, and still in the same plateau; platelets values the same and needing RBCs every 2-3 months. Not to say this is ideal, but its my story. Always helpful hearing about others similar.

At this point we are in the talking stages of considering a 2nd round of ATG. Not sure when, how long, or any details. will keep you informed since it might give you some insight.

Dear SusanSR, thanks for sharing your latest conditions. Yes, it is helpful when one heard from others with same disease and similar. I am thankful for this forum, for all those here to share their stories, knowledge and experience. I learn from here that we need to be patient when facing this disease. So I keep my fingers crossed for my niece and for others also suffering from this dreadful disease. I hope your response, though slow, would be further and further improved in the coming months, with a delayed response as some other members in this forum.
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  #12  
Old Sun Jun 12, 2011, 07:00 AM
Leung Leung is offline
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Hi all,

I haven’t posted here for several months. My teenage niece is already 10 months since ATG, and had just marginal improvement at around 5 month post and has recently declined back to pre-treatment level. I understand one has to be patient when facing AA. In the past 10 months, I kept reminding myself that ATG may take as long as 9 months to a year to work and so tried to stay positive. But now, seeing a downward trend, we have already given up our hope in this treatment. Her doctor also said it is unlikely she will improve further. My niece’s counts recently hovered around 20k+ for PLT, HGB 7 – 8, ANC around 1. My niece has been on cyclosporine of 200 mg per day (100 mg twice per day) since Aug last year and has started tapering in late April from 100 mg twice per day to 75 mg twice per day (i.e. 25% reduction). Doctor’s original plan is to reduce 25 % every 3 weeks, but as her counts are on downward trend, doctor hold the taper and her current dosage still remains at 75 mg twice per day. Doctor mentioned adding steroid if counts further deteriorate. He has also mentioned repeating ATG later. We hope but wonder whether repeating ATG will help, given her minimal response for the 1st time. We also wonder if steroid could help as my niece had tried steroid before ATG treatment.

Would appreciate any advice/views or sharing. Any body has similar experience as my niece? We are stuck now and feel rather helpless.
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  #13  
Old Sun Feb 26, 2012, 11:59 AM
marmab marmab is offline
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If and when to repeat ATG?

I'm hoping everyone on this thread is doing OK. There hasn't been a post in awhile. I am grateful for the knowledge, wisdom & experience of all those who take part in these forums. Sorry for this long post, but I value any and all input!

Some background: I had hATG in Sept. 2011, and am on CsA, along with Valacyclovir and Pentamidine for prophylaxis. At my upcoming appointment with my hematologist, he wants to discuss repeating ATG. I have had only a minimal response -- my plts rose above tx level between weeks 7 & 15 post-ATG, getting as high as 42 on one CBC (who-eee!). I have needed PRBCs all along, and am now needing plts again, as well. My diagnostic profile suggested that I was an ideal candidate for ATG/CsA. Supposedly up to 70% of people like me respond, so needless to say, I'm disappointed that it hasn't worked out for me so far. So...my questions:

1. I understand that the protocol is to repeat ATG after 6 months. Should I wait beyond 6 months post-ATG in the hopes of responding "for real', or was my brief rise in plts all that I can expect from this first round? (For those out there who have had a delayed response, did you have any minimal response in the initial 6 month period, like I did?) Does timing of the 2nd ATG matter?

2. I sailed through the ATG, but I'm on a relatively high dose of CsA (450mg/day) for my body weight (127 lb.) in order to achieve the desired trough level (my liver is evidently quite adept at chewing through this stuff). Although I'm tolerating this CsA level OK, I don't relish staying on this drug and dose for a long time (forever?) if I repeat the ATG. Are there any studies about the optimum CsA trough level in immunosuppressive therapy for AA & MDS patients, or is the dosage based on studies of organ transplant patients?

3. Should I look into something else entirely, like the Promacta trial at NIH for low-inter. MDS patients, since plts, especially, seem to be a particular problem for me? Although I have been tx-dependent for only 6 months, I have required HLA-matched plts from the 2nd unit onward, and have had further reactions to both plts and PRBCs. I now need IV Benadryl before every tx, which hits me like a ton of bricks each time.

Thanks so much, in advance, for any advice!

Marmab
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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  #14  
Old Sun Feb 26, 2012, 02:03 PM
Sally C Sally C is offline
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Hi Marmab,
Your experience personifies the complexity of these blood diseases.
Before I read #3 in your post I was already thinking of suggesting that you go to NIH to see what they think. My husband had Campath there in 4/09 with minimal response. He was the first patient in their low risk Promacta trial and started the drug in March, 2011.
I have posted about his great response under "Clinical Trials" which I'll direct you to instead of writing it again. Bottom line he has been transfusion independent for platelets and red cells since last spring. Cyclosporine did nothing for him - the Campath normalized his white cells only - but that was a blessing.
So you can fully appreciate his progress while on Promacta, he needed about 60 transfusions in 2009 (blood but especially platelets) and the same for 2010.
Please feel free to contact me via e-mail if you have any further questions that my posts haven't answered - shcalvert3@aol.com - or send a private message if you would prefer that.
NIH is a wonderful, healing place with doctors that will sometimes answer e-mails within minutes - they are so accessible!!
I also want to mention that Don has tolerated the Promacta very well. He just had a BMB in Feb. and all was well with the potential side effect of fibrosis - so far so good.
Best wishes and God Bless,
Sally

Last edited by Sally C : Sun Feb 26, 2012 at 06:57 PM.
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Old Mon Feb 27, 2012, 12:20 AM
Hopeful Hopeful is offline
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Hi marmab,

I can comment a little on #2. It is now thought that 5 mg/kg/day is the maximum dosage of CsA for AA patients to minimize unnecessary toxicity. I also metabolize CsA quickly. So, my expert does not even look at my troughs. (They never were at the desired level except when I was taking 12 mg/kg/day.) I've read articles that mention the problems with establishing a CsA dosage based on trough, given the differences in peoples' metabolism of the drug. It has been argued that a 2 hour reading may be more effective for people like us. Unfortunately, there haven't been any large scale studies done on this - and certainly none done on AA/MDS patients!

It looks like you are on ~8mg/kg/day of CsA, which is fairly high but not crazy-high. I was on 12 mg/kg/day of CsA and saw a rise in my counts when I decreased the dosage to the more saner 5 mg/kg/day. The rise happened about 2-3 weeks after I decreased the dosage. Maybe it was coincidence, but maybe not. I wonder if the extra stress of CsA on the kidneys negatively effects EPO/TPO production, which in turn holds down RBC and platelet counts. It may be worthwhile discussing with your doctor lowering your CsA now to 5mg/kg/day to see if it will have a positive effect.

How frequently are you getting platelet and RBC transfusions now? Have you been sick at all since the ATG? It's amazing how much a simple cold can lower your platelets when your marrow is fragile. Are your whites still low? Do you have a listing of your counts?
__________________
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Mon Feb 27, 2012, 09:01 AM
marmab marmab is offline
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ATG, continued

Thanks so much Sally and Hopeful, for your replies. I am typing up some questions, based on your input, to ask my hematologist at my appointment with him tomorrow.

In answer to how often I'm getting tx, I'm back to needing plts approx. once a week and PRBCs approx. every 3 weeks. I don't have copies of my CBC from last week, but one from earlier in Feb. shows:
WBC 2.5
RBC 2.46
HGB 7.6
HCT 23
PLTs 13
Creatinine 1.11 (my baseline is .7-.8; since I've been on CsA, it varies between 1.11 and 1.2)
BUN 37 (my baseline is 16-17; it has been in the mid 30s while on CsA)

I usually get tx when my plts are in the teens, and my Hgb is in the 7s. With the counts above, I got one unit of plts, and two of PRBCs. My plts have to be ordered a day in advance because they are HLA matched. Sometimes my hospital has PRBCs in stock, sometimes they have to be ordered too.

Regarding illness and counts, I have had two colds in a row since late Jan. and feel like I haven't completely shaken them, so as you mentioned, this is probably affecting my counts. However, unfortunately, my plts began their decline back in mid-Dec., after a brief response beginning at week 7 post-ATG. They had climbed into the 20s and 30s in Nov., peaking at 42 on one CBC, and then steadily declined, dropping into the teens again in Jan. (week 15 post-ATG). The interval between PRBC tx also seemed to improve a teeny bit back then (maybe 4 weeks btwn. tx rather than 3). Not quite sure if this qualifies as anything resembling a response.

We'll see how it goes at my appt. tomorrow. Thanks again!

Marmab
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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Old Mon Feb 27, 2012, 01:30 PM
Hopeful Hopeful is offline
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Hi Marmab,

I'd strongly encourage you (and all MDS/AA patients) to track your blood counts in a Excel spreadsheet. There is a nice charting function with Excel that can help you (and your doctor) look for trends. If you are not familiar with Excel and would like a template to get started, let me know and I'll post one here. In the spreadsheet, you can note your cyclosporine dosage, transfusions, as well as when you are sick. Believe me, it makes a huge difference over the long run in figuring out what is going on. It is easy to get caught up in arbitrary spikes up/down when you are getting your blood drawn weekly, or twice a week. The trends are what is important though.

Looking back at my counts, I was transfusion independent about 4 weeks after ATG. I also had a spike up to 41 about 8 weeks after ATG. My platelets then decreased to the 30's and sat there for 5-6 months before slowly rising.

So perhaps you did have a response like mine and the viral infections are really taxing your marrow right now. I've see drops in my platelets of 30% when I've been ill. Since you are in the early stage of recovery, you have less reserves to make new platelets if the current ones are being chewed up rapidly by a virus. It is also believed that viruses can also trigger relapse even once the marrow has "recovered".

Get well soon and good luck at your appointment tomorrow!
__________________
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #18  
Old Mon Feb 27, 2012, 04:15 PM
Polly S Polly S is offline
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Hopeful,

I would really appreciate seeing a template for tracking blood results. I am useless with IT and have been meaning to start tracking my results for months now but am not sure of the best way to do it!

Many many thanks in advance

Polly x

VSAA Dec2010, partial response to cyclo, Trans independent since dec 2011, keeping everything crossed!!
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Old Mon Feb 27, 2012, 05:12 PM
marmab marmab is offline
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Ditto

Yes, thanks for this tip, Hopeful! I do keep track of my CBCs and trends, but not with an Excel spread sheet, which is an excellent idea!

Other than my 8-week bump in plts in Nov. & Dec., my trends have been downward, and at a fairly predictable rate. I'm really hoping that this changes soon, especially since I've been getting some transfusion reactions lately. However, that said, every now and then I'm lucky enough to receive a great bag of plts -- much larger volume than usual (also a better match, perhaps, and maybe really fresh?), and I get a larger bump than is typical, and can thus go longer until the next tx.

Thanks again for your input -- your experience and knowledge is very helpful!

Marmab
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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  #20  
Old Tue Feb 28, 2012, 12:37 AM
Hopeful Hopeful is offline
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Hi Polly and marmab,

It looks like I can't post Microsoft Excel files on the forum. So, if you are interested, please send me a private message with your real email address, and I will send you a copy of the template that I use along with instructions for how to use it (assuming you aren't familiar with Excel). You need to have Excel loaded on your computer to run it.

If I get ambitious, I may try and write my own version of a CBC tracker that is simpler to use than Excel. I'll share it if I do
__________________
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #21  
Old Mon Apr 30, 2012, 12:18 PM
JoaquinM JoaquinM is offline
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Quote:
Originally Posted by susansr View Post
I am nearing one year post-ATG, and still in the same plateau; platelets values the same and needing RBCs every 2-3 months. Not to say this is ideal, but its my story. Always helpful hearing about others similar.
Hi Susan,
I have been living with 24,000 / 29,000 plaquetes for 15 years now (horse ATG was almost 30 years ago). Since I'm new at the forum, I will be opening a separate thread to tell my story, it might be useful for others...I had the ATG being 11 years old, now I'm 40. Not taking any medication for the last 15 years, other than folic acid, 5mg a day.
My full blood count is not spectacular of course, but I have a normal life
Kind regards,

Joaquin
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  #22  
Old Sun May 27, 2012, 06:13 AM
glitterandlace glitterandlace is offline
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Happy for you!!!!! =-)

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Originally Posted by Hopeful View Post
5k seems like a rise to me! At my last blood test, my platelet count jumped to 111k! Previously it was in the 90k's, so it may be a fluke. My ANC is normal and my HGB is low normal. My RBCs are slightly low. I am currently taking 175mg/day of cyclosporine.

My doctors tossed around the idea of a second ATG at 6 months, but weren't sure it was worth the risk since my response wasn't too dramatic the first time. At the time, they didn't think my platelets would get much higher than the 30k's. They also didn't think my response would last more than 10 months because of the MDS component. Needless to say, I'm cautiously ecstatic and hope I didn't just jinx myself by writing all of this!

Patience! Hope things continue to go well for your niece!
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  #23  
Old Sun May 27, 2012, 06:25 AM
glitterandlace glitterandlace is offline
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Quote:
Originally Posted by JoaquinM View Post
Hi Susan,
I have been living with 24,000 / 29,000 plaquetes for 15 years now (horse ATG was almost 30 years ago). Since I'm new at the forum, I will be opening a separate thread to tell my story, it might be useful for others...I had the ATG being 11 years old, now I'm 40. Not taking any medication for the last 15 years, other than folic acid, 5mg a day.
My full blood count is not spectacular of course, but I have a normal life
Kind regards,

Joaquin
I am VERY interested in hearing your story. Please give me the thread to your story!!!!! Just message me. =-) I am a firm believer also that you should not go to such drastic measures (ATG, Cyclo, Stroids) unless your levels are so continually low, that you are at risk of death. As long as you are transfusion independent IS the most important thing. Then you can work on it from there with diet, supplements, or herbs,,,ect. I am wondering how do you get your teeth cleaned with platelet levels that low? That is the only thing I am scared of doing right now. I haven't had my teeth cleaned for almost 2 years because of AA. =-( But my platelets are a little lower than yours. I won't get a platelet transfusion now until my platelets drop below 10. Before I was getting transfusions when my platelets were in their 20's at the doctors pressuring. I have now realized you REALLY do not need a platelet transfusion in your 20's. But I wish to be in my 20's again like you.
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  #24  
Old Sun May 27, 2012, 07:20 AM
MelanieW MelanieW is offline
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Join Date: Mar 2012
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Dear Glitter and Lace

It had only been 9 months since my last dental cleaning, but my platelets were at 28,000 last check and I said "I'm going". I had no problem whatsoever with the cleaning.

I had Horse ATg in March 2012 - last transfusions of PRBC and platelets were on April 17th (5 weeks post ATG). Last CBCs: Plt 28,000, HGB 8.7 and WBC 4.1. Next appt is this Wednesday.

My issue has been getting my tacrolimus trough up high enough where it needs to be. Last reading finally up to 4.2 which is close to the recommended level for tacro of 5 to 10. Dr. says this could cause a delayed response.
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  #25  
Old Tue Jun 5, 2012, 01:01 AM
dfantle dfantle is offline
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Hi, for the past year, until my Horse ATG this past March, my platelets were regularly in the 10-15k range and I was getting platelets 2-3x a week. I hadn't been to the dentist for a year and wanted to go before my ATG treatment, so my team scheduled a platelet transfusion the day before my cleaning, did a post count to ensure it was high enough (think it was in the 30k range) and gave me clearance for a light cleaning.

I'm now 2 months post ATG, and ever since, I gained at first 1day each week between platelet and blood transfusions, and GCSF shots, then 2 days and it's now up to 2 weeks (big difference from 2-4 days for Platelets, 1 week for blood and 2-3 days between GCSF shots). I'm cautiously optimistic, but also realistic that this may not continue to stretch out. Though It now looks like I'm starting to produce a few white cells and platelets on my own, which is so great after the last year of no production.

Please excuse typos. Sent from my cell phone
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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