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  #1  
Old Tue Apr 14, 2015, 11:31 AM
TASHMAC TASHMAC is offline
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Relapse 2.5 years post successful ATG

Hi,

I am just wondering whether anyone else has relapsed after having ATG (Horse) + cyclosporine. In my case I responded very quickly to the ATG (had ATG in November 2012) and within 4 months of having the ATG I had normal blood results. My doctors implemented a very slow taper of the cyclosporine. In January 2015 we reduced my cyclosporine to 75mg / day (last reduction was November 2014 were we reduced it to 100mg) and by March all my counts were down. My doctors then decided to increase cyclosporine to 200mg/day and have indicated that it may take 4 weeks before we know whether the increased drug has worked. We are 2.5 weeks in and my counts are still falling.

I am just wondering whether this has happened to anyone else and whether they responded? If they did respond how long it took to respond and whether they are ok now and simply needing to take a higher level of the cyclosporine.

I am also interested to know whether relapse typically means that the AA is only going to get worse or morph into something else.

I have yet to have a BMB.

Thanks.
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  #2  
Old Wed Apr 15, 2015, 02:04 AM
Hopeful Hopeful is offline
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Quote:
Originally Posted by TASHMAC View Post
Hi,

I am just wondering whether anyone else has relapsed after having ATG (Horse) + cyclosporine. In my case I responded very quickly to the ATG (had ATG in November 2012) and within 4 months of having the ATG I had normal blood results. My doctors implemented a very slow taper of the cyclosporine. In January 2015 we reduced my cyclosporine to 75mg / day (last reduction was November 2014 were we reduced it to 100mg) and by March all my counts were down. My doctors then decided to increase cyclosporine to 200mg/day and have indicated that it may take 4 weeks before we know whether the increased drug has worked. We are 2.5 weeks in and my counts are still falling.

I am just wondering whether this has happened to anyone else and whether they responded? If they did respond how long it took to respond and whether they are ok now and simply needing to take a higher level of the cyclosporine.

I am also interested to know whether relapse typically means that the AA is only going to get worse or morph into something else.

I have yet to have a BMB.

Thanks.
Hi TASHMAC,

I am in the same boat as you, but I am 6+ years from my ATG. I would encourage you to get the BMB sooner vs later. My doctor delayed doing it for almost a year after I restarted the cyclosporine. My marrow was slightly hyperplasia by then and was morphing. I regret not knowing whether my marrow was hypocellular at the time of my relapse, as this would have been a clue that an immune attack was going on vs something else.

I am conflicted on using cyclosporine alone as a salvage treatment. I am currently taking a low-dose of cyclosporine, and my counts continue to fall. I know that a few people on this forum were able to restore normal counts on higher dosages, but I don't think it was long-term before relapsing or other cancers occurred. I am interested to hear whether there are any long-term survivors out there on cyclosporine salvage treatment.

On the flip side, if you had a robust response to the first round of ATG, the literature that I read seems to indicate that you will likely respond to another round of ATG/ALG and that relapsing doesn't have a negative impact on long-term survival. That's why I wonder whether it is better to try to band-aid with cyclosporine vs going for the big guns with ATG.

I am interested in what you learn, and wish you the best!
__________________
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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  #3  
Old Wed Apr 15, 2015, 05:54 PM
TASHMAC TASHMAC is offline
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Hi Hopeful,

Sorry to hear that you have also suffered from a relapse but thank you for your reply. This disease is such a roller-coaster.

The concern I have is that once you relapse that you are more predisposed to something much more sinister and/or if you do manage to respond to the cyclosporine that you will never actually be able to stop taking it.

My doctors are still convinced that the relapse is due to the reduced cyclosporine, in my case I also stopped taking birth control in December and had dropped the cyclosporine to 100 in November and then it was dropped again to 75 in January. Research does show that birth control impacts cyclosporine so it is possible that the reduced cyclosporine combined with stopping the birth control is why I relapsed but it is difficult to say to what degree the birth control impacted the cyclosporine. I had hoped that my results would have stopped falling given we increased cyclosporine to 200mg about 2.5 weeks ago.

Did you respond well and quickly to the ATG? Did you have ATG a second time or have you simply stuck with trying the increased cyclosporine? If you simply increased cyclosporine how long did it take for you to show a response? You indicated that you wish you had had the bmb sooner as it was an immune attack - are you able to provide more detail in this regard? I have been suffering from a minor cold which has been on and off since early February and my 2 young children have had the same thing for the same period of time. I have just started to take antibiotics as we thought it might be worth a shot. I have not suffered any fevers.

I look forward to hearing from you.
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  #4  
Old Wed Apr 15, 2015, 08:44 PM
clairekim clairekim is offline
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Hi there.

My wife Claire, too, relapsed after successful ATG + Cyclo treatment back in 2011. Back then, her counts moved quickly but did take upto a full year before reaching normal levels.

She relapsed in Oct 2014. She had another Horse ATG + Cyclosporine. We also added Eltrombopag this time. However, unfortunately, we haven't yet seen a robust response. After 4th month, her counts moved a little. She stayed transfusion independent for 2 months now, but her counts steadily moved downward again. And here we are today at MDAnderson in Houston, getting prepared for transfusion again.....

We are now seriously considering BMT. She only has 9/10 donor. So we are meeting with doctors at NIH next month, hoping there's a good clinical trial for us. Specifically, we are interested in haplo BM + Stem Cell co-infusion transplantation trial.

The odd thing is that Claire's latest bone marrow biopsy showed >40% cellularity and her Retic count is now in normal range. Yet her CBC counts are not moving in the right direction.....

Good news...she doesn't have any signs of clonal evolution.
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Claire, mother of 2, first diagnosed in Nov 2011. Remission post ATG+cyclo. Relapsed in Oct 2014.
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  #5  
Old Thu Apr 16, 2015, 01:04 PM
TASHMAC TASHMAC is offline
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Clairekim, thank you for your response. I wish your wife all the very best and do hope that the NIH have some alternative options for you.
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  #6  
Old Thu Apr 16, 2015, 02:55 PM
Hopeful Hopeful is offline
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Quote:
Originally Posted by TASHMAC View Post
The concern I have is that once you relapse that you are more predisposed to something much more sinister and/or if you do manage to respond to the cyclosporine that you will never actually be able to stop taking it.
I think that once you have AA, unless you have a successful transplant, you are always predisposed to something more sinister because the bad clone is still there. It is true that you may have to stay on cyclosporine indefinitely, but it may be at a very, very low dose.

Quote:
Originally Posted by TASHMAC View Post
My doctors are still convinced that the relapse is due to the reduced cyclosporine, in my case I also stopped taking birth control in December and had dropped the cyclosporine to 100 in November and then it was dropped again to 75 in January. Research does show that birth control impacts cyclosporine so it is possible that the reduced cyclosporine combined with stopping the birth control is why I relapsed but it is difficult to say to what degree the birth control impacted the cyclosporine. I had hoped that my results would have stopped falling given we increased cyclosporine to 200mg about 2.5 weeks ago.
I have also read that birth control pills and cyclosporine interact and should not be taken together. It seems likely that stopping them both at the same time probably resulted in a larger decrease of the cyclosporine concentration in your system.

2.5 weeks on a higher dosage of cyclosporine is probably not enough time to see a reaction. The cold is not helping things either It takes 2-3 months for it to build up in your system again. Unfortunately, it is unclear what the levels were before because of the birth control interaction. Did your doctor do trough or 2-hour cyclosporine (the peak) measurements?

Quote:
Originally Posted by TASHMAC View Post
Did you respond well and quickly to the ATG? Did you have ATG a second time or have you simply stuck with trying the increased cyclosporine? If you simply increased cyclosporine how long did it take for you to show a response? You indicated that you wish you had had the bmb sooner as it was an immune attack - are you able to provide more detail in this regard? I have been suffering from a minor cold which has been on and off since early February and my 2 young children have had the same thing for the same period of time. I have just started to take antibiotics as we thought it might be worth a shot. I have not suffered any fevers.
I did not respond rapidly to ATG. I got off of transfusions fairly quickly, but my counts didn't really start rising for ~7 months and then they rose very slowly. I am a partial responder, as my platelets never quite reached a normal level.

I was on cyclosporine for ~2 years before I started tapering. My platelets were still slowing rising at this time, but I had a new doctor, and he thought they were high enough. I started a very slow ~2 year taper.

My platelets stopped rising but seemed to be holding for most of taper. When I got down to a very low dosage of cyclosporine, they started their slow and continuous fall. I was off cyclosporine for a little less than a year. My counts have slowly fallen the entire time at about the same rate that they were previously slowly rising.

My doctor tried to rescue things by restarting me on a very low dose of cyclosporine. He would not give my a BMB prior to restarting as he didn't think it would change anything in his treatment. My counts held for about a year but now are slowly falling again.

I finally had a BMB ~1 year after being back on cyclosporine. Things look different in the marrow when you are on cyclosporine. I wish I had it done before I restarted.

My case is different from yours because I am an AA/MDS overlap. My marrow does not look like I have AA anymore. I am hoping my condition is still immune-mediated and will respond to IST.

If I could do this differently, I would not have tapered while my counts were rising and I definitely would not have continued to taper while my counts were falling. I also would have gotten a BMB before restarted cyclosporine.

I hope this helps and that you start to see a response!
__________________
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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  #7  
Old Thu Apr 16, 2015, 03:11 PM
TASHMAC TASHMAC is offline
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Thanks for your reply Hopeful. I had ATG mid November of 2012 and only required 1 rbc transfusion and 2 platelet transfusions post the ATG - my last transfusion was the 23rd of November 2012 so I responded very quickly. My doctors started tapering cyclosporine about 6 months post the ATG.

The interesting thing is that about 14 months post the ATG my plt count started to taper as well albeit it always remained within the normal range. From February 2014 my plts virtually dropped by 10 each month but all other counts remained steady. February 2014 Plts were 240 and by November of 2014 they were 180. By February 2015 they were 130 and now 31. As such I do wonder whether it is simply a case of finding the right level of cyclosporine for me and that the combined drop in cyclosporine and stopping the birth control simply triggered the fall.

Unfortunately we had not been tracking my cyclosporine trough levels.

I also have a small PNH clone.
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  #8  
Old Thu Apr 16, 2015, 11:50 PM
Hopeful Hopeful is offline
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Hi TASHMAC,

Is the PNH clone new? Having a small PNH clone is a positive sign that you have an immune attack going on that will likely respond to IST. Being an early responder is also a positive sign that you will respond to a second round of ATG.

From what I have read/heard, it seems like relapse is more frequent with people who had a rapid response to ATG. Perhaps it is because cyclosporine is discontinued too early while the bone marrow is still in a fragile state. The bad T-cells are still there, albeit in smaller numbers. If there is no cyclosporine to keep them at bay, and if the marrow is not back to normal cellularity yet, it seems plausible that the bad T-cells could eventually overpower the marrow again. That's my theory on why early responders relapse. Perhaps that is what happened in your case.

The million dollar question is once you start to relapse, does it make more sense to let it go and just knock everything out with ATG again, this time being smarter about tapering off of cyclosporine? Or is it better to try to stop the relapse with cyclosporine alone? I am starting to think a second round of ATG is the way to go, although I don't relish the thought. I wonder if attempting a cyclosporine rescue is just postponing the inevitable full blown relapse and potentially putting the patient more at risk because of kidney toxicity and increased cancer risk. Once your counts have fallen significantly, is it too little too late to really make a difference long term with cyclosporine alone?

I am interested to hear what your doctors think. They seem to be on top of things.
__________________
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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  #9  
Old Fri Apr 17, 2015, 09:46 AM
TASHMAC TASHMAC is offline
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Hopeful, I honestly have no idea and at this point in time don't know whether I should just go straight for ATG or keep with the cyclosporine. I the back of my mind I seem to think that ATG again is more toxic on my body than long term cyclosporine - would appreciate your thoughts in this regard.

As for my PNH clone it has been present all along - low level - but just received results back from recent tests and the clone has increased in size and am now waiting for doctors to give me further information in this regard. Results now are PNH Erythrocyte clone .12% and PNH Granulocyte clone 2.14% previously these had respectively been .01% and .67%.
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  #10  
Old Sat Apr 18, 2015, 10:22 PM
Hopeful Hopeful is offline
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Quote:
Originally Posted by TASHMAC View Post
Hopeful, I honestly have no idea and at this point in time don't know whether I should just go straight for ATG or keep with the cyclosporine. I the back of my mind I seem to think that ATG again is more toxic on my body than long term cyclosporine - would appreciate your thoughts in this regard.
I wish I knew what the right thing to do was! I agree that ATG is pretty toxic and there is always a risk that you could have a serious complication from the procedure. On the other hand, if you have to go this route, I know that there are a bunch of success stories from people who relapsed after too fast a taper and had a successful 2nd round of ATG.

Personally, I am not anxious to go through ATG again, but I am also growing less optimistic about long term cyclosporine as a salvage treatment. Have you heard of success stories from people that were on long-term cyclosporine? Success stories to me are 10+ years survival after relapse with kidneys still intact

I remember Dr Young gave a great presentation a few years back where he talked about why ATG was not a cure. He showed that they had found the clone of bad T-cells that were beaten down after ATG, but remained in the marrow in small numbers, nonetheless. I wish they did a similar study with long term cyclosporine usage. Wouldn't it be interesting to see whether the clone continued to grow (but at a slower rate) or whether it stayed small (or got smaller) while on cyclosporine.

I am interested in what your doctors have seen. At my next appointment, I will ask my doctors what they have seen in practice and will report back
__________________
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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  #11  
Old Sun Apr 19, 2015, 09:28 AM
TASHMAC TASHMAC is offline
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I have heard from 2 women who relapsed about 11 to 15 years ago and had a second round of ATG and are still taking a low dose of cyclosporine today about 50 mg/day and have no symptoms. Both women were teenagers/early twenties when they had the second round of ATG.
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Old Sun Apr 19, 2015, 12:44 PM
Hopeful Hopeful is offline
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That is encouraging! I wonder if that second round of ATG was required to turn things around though. Like you, I am still hoping that I can avoid it!
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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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  #13  
Old Sun Apr 19, 2015, 01:31 PM
sues sues is offline
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I am on day 16 since they began treatment with atg and cycosporine. It has been hell and I almost regret doing it, but with severe a a I will just die.
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  #14  
Old Sun Apr 19, 2015, 04:22 PM
vickij vickij is offline
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I had hATG in April 2012 for AA, my blood counts were good until we started cutting back on cyclosporine & my numbers started to drop. I did not know anything about AA or MDS but I had a wonderful onc/hemo Dr. Every visit he would talk about another ATG or bone marrow transplant. When hmg kept falling he did another BMB in April 2013 & it showed MDS. He wasn't sure of transplant because of my age ( 59). I went to transplant Dr & had all kinds of tests & was cleared for transplant. I was very lucky that they found a 10/10 match on donor registry. I had transplant June 2013. I was taking cyclosporine & several other drugs but hmg would still fall. When it dropped to 7 I would need transfusion. This went on until June 2014 when my blood type changed to my donors type. I was O neg, he was AB. I haven't needed transfusion since. I was tapered off of cyclosporine Dec 2014 & doing good trying to get use to my new normal. I m very thankful for this forum, I have learned so much about these crazy blood cancers.
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62 yr old female. dx AA 3/12.treated with ATG 4/12.dx MDS 4/13. MUD BMT on June 25th,2013
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  #15  
Old Mon Apr 20, 2015, 12:42 AM
Hopeful Hopeful is offline
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Quote:
Originally Posted by sues View Post
I am on day 16 since they began treatment with atg and cycosporine. It has been hell and I almost regret doing it, but with severe a a I will just die.
Hang in there! You are almost through the worst of it!

Remember this advice:

1. Don't be in a hurry to taper off of cyclosporine if your counts are still increasing and you are tolerating it okay.

2. Do not taper quickly! Monitor your counts vigilantly during the taper.

3. If your counts start decreasing, stop the taper until they stabilize for a period of time.

Best of luck!
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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 Apr 20, 2015, 09:26 AM
sues sues is offline
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Seems like I will be stuck on Cyclosporine forever, or have to get a transplant. I am not sure if this was the best choice here. I am having bad leg and arm pains at night and I really am afraid of this drug ruining my kidneys.
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  #17  
Old Thu Apr 23, 2015, 09:44 AM
TASHMAC TASHMAC is offline
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I meet with my doctors yesterday and while my counts have fallen further they have recommended that we continue with the cyclosporine albeit they have decided to increase cyclosporine by 100mg a day and have also suggested I start taking prednisone 40mg per day.

They starting talking about other options if counts did not improve and suggested that if we were to do ATG again rather than doing ATG Horse (which is what I had the first time) they would use rabbit. They also mentioned another drug which is supposedly commonly used with MS but is similar to ATG - "compass"??? Not sure of spelling. Has anyone heard of this drug or used it with AA?

I am still awaiting results back from my bmb but son far it shows no signs of leukaemia.
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Old Thu Apr 23, 2015, 11:33 AM
Hopeful Hopeful is offline
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Hi TASHMAC,

Campath (alemtuzumab) is the alternative to ATG/ALG. You can check out the posts by Greg H on this website for a detailed overview of what it is and how it worked for him. It is a newer treatment for MDS/AA.

Rabbit ALG is typically given for relapsed AA because of the fear of a stronger adverse reaction to horse ATG the second time around. However I don't think clinical trials have shown that this is the case. So both are options.

Here is a good article on Campath for SAA.
http://www.bloodjournal.org/content/...o-checked=true

I recently read another report that said that if you had a quick and strong response to ATG the first time around, you are more likely to relapse, but you are also more likely to respond to another round. The reason being is that you are less likely to have significant stem cell damage than those who took longer to respond. The article went on to say that people who took longer to respond to the initial ATG are less likely to relapse but are also less likely to respond to another round.

Are they trying the prednisone because they think you may have an ITP component? Push for that BMB because you will be better able to tell if this is true!

I hope the cyclosporine works for you!
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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 Thu Apr 23, 2015, 10:07 PM
TASHMAC TASHMAC is offline
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Thanks for all the helpful information Hopeful, you are a wonderful support.

As for the prednisone, we are including this because last time when my hgb was not responding post the ATG they decided to have me take prednisone and it seemed to do the trick. It looked like I had hemolytic anaemia but I was coombs negative so they were baffled by why my hgb was lagging when all other counts were improving, so decided to use prednisone. I think the other thing that is perhaps a tad different with me is that while my plts are the first to fall after the ATG they were the first to recover and very quickly - 3 months post ATG - they were 220. From what my doctors have told me this is not the norm.

I have preliminary results back from BMB and at this stage I am clear for Leukaemia and MDS. As you can imagine when I found this out it was a huge relief. They are however waiting for full results (mutations etc.) and this may take another week or more.

They did not directly answered my query re what this relapse means long term and further if I respond to the increased cyclosporine (which would be great) what this means... I think they just don't know. They did seem very anti going straight to ATG now.

I would also like to understand more about whether cyclosporine at say 200mg a day is considered a high dose or relatively mundane.

With respect to the Campath it seems that this could be also an alternative option to taking cyclosporine and I could potentially have a one of monthly injection of Campath in lieu of the cyclosporine.
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Old Fri Apr 24, 2015, 05:06 PM
Hopeful Hopeful is offline
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Originally Posted by TASHMAC View Post
I would also like to understand more about whether cyclosporine at say 200mg a day is considered a high dose or relatively mundane.

With respect to the Campath it seems that this could be also an alternative option to taking cyclosporine and I could potentially have a one of monthly injection of Campath in lieu of the cyclosporine.
Hi TASHMAC,

Cyclosporine dosing is dependent on your weight.

4-6 mg/kg/day is considered a "standard dose", based on my expert doctor's opinion and other things that I have read.

I would consider anything under 3 mg/kg/day a low dose and anything over 6 mg/kg/day a high dose.

To find out what you are taking, convert your weight from pounds to kilograms by using a Google calculator. Then take your total daily dosage (200 mg) and divide it by your weight in kilograms. This will tell you how many mg/kg/day you are taking.

With regards to Campath, I wouldn't think of it as an alternative to Cyclosporine but as an alternative to Rabbit ALG. It leaves you with a higher risk of serious infections for a longer period of time then ATG.

Hopefully, the cyclosporine will work instead!
__________________
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 Sun May 17, 2015, 06:36 AM
rukalukavina rukalukavina is offline
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Some good advises here.

I've also relapsed few months ago, after rATG in 2009 (my counts rose quickly) and a high dose CyA in 2011 and slow CyA taper (25+0+25) until March this year.
They took me off of CyA completely, so I'm now receiving platelet transfusions since they are mostly affected.
My doctors were considering ABMT, maybe rATG again (since hATG is not approved yet, here in Serbia).
Anyway, they are preparing me for an ABMT but rATG is not excluded too. Sometimes I have a feeling they do not know what is better for me, because I'm not VERY sick (platelets are 16 now).
Sometimes I go , then then then ...

Sleep a lot, do something You like and feel free to express Yourself, eve if it is anger or frustration. They are healthy emotions
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Diagnosed with AA in 2006; on CyA 2006-2014; treated with rATG in 2009; relapse in march 2011, high dose CyA + tapering - success (all values normal); low values in 2015; discontinued CyA, rATG+CyA December 2015; Working full time as of June 2016: CyA tapper to this day.
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  #22  
Old Wed May 20, 2015, 10:08 PM
TASHMAC TASHMAC is offline
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As an update, I gave the increased cyclosporine 6 weeks and at one point it looked like it may have been working, as retic count was improving and platelet were holding at 20, but about 10 days ago my counts started to stall and then started to slip back again. As such we decided that it was best to move forward with a second round of ATG (rabbit). I had my first infusion yesterday and suffered some minor serum sickness and today I had virtually no symptoms at all. My counts post the first infusion have already taken a dive which is a good sign. I am feeling very positive and believe that having the ATG (rabbit) was the best option for me.
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  #23  
Old Thu May 21, 2015, 05:17 PM
Hopeful Hopeful is offline
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Good luck TASHMAC! I think you made a good choice and hope you will be feeling stronger everyday!
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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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