Potential Donor is NOT a match :(

[Dre's Wife]

Well, the doctor came in and dropped a bombshell on us. He said the two potential donors that were found on the registry are not suitable donors. So, they have started my husband on a lower dose of cyclosporine (the higher dose he had previously caused his kreatinin to rise to dangerous levels). He may also undergo another ATG cycle and be given another type of medicine. I don't remember the name of it. All I know is it starts with a "c".

Are there a lot of success stories of people beating Aplastic Anemia through the use of medication?

Thanks,
Worried Wifey

[evansmom]

What protocol are your husband's doctors following? If he's only had ATG 3 months ago, it's too early to deem it unsuccessful. One should wait, if possible (i.e. no serious infections or other ongoing complications), at leat 6 months before the team can say the ATG didn't work. Then plans are made for the next move, whether BMT or repeat ATG or high dose cytoxan.

It is seldom that a response is seen 3 months post ATG so I fear the team is jumping the gun a bit.

I assume both national and international bone marrow registries were searched?

[mscrzy1]

Like Evansmom stated, I, too, think that worrying about a BMT donor is a little premature. However, I do remember them searching for one for me at the same time of ATG, so it's probably something they would like to keep in their back pocket for future use if necessary. Don't get too upset because there are many of us AA survivors who did not receive a BMT and found remission through drug therapy.

[JodyW]

Erica,
My son was diagnosed with VSAA in March 2011and began ATG/cyclosporin in April. He became transfusion independent around July but due to effects on kindneys had to have his Cyclosporin reduced and then returned to transfusion again. He has been back on transfusions about every 3 weeks since they dropped his dosage. For reasons I wont get into here, Trevor wont recieve a BMT. When I was in your place someone had responded to me to watch a video on http://www.aamds.org/ regarding the success of supressent therapy vs BMT. After veiwing the video I was no longer convinced that a BMT was the only answer. Im not sure of which video, but the info on that site will help you tremendously. Hopefully that helps you in some way.

[mscrzy1]

That's right, Jody! That was me and I remember which one I recommended for you. https://live.blueskybroadcast.com/bs...27&MA_ID=16322 It's a great resource and definitely helps AA feel a little less daunting.

[Dre's Wife]

Thanks everyone for responding. The doctors are thinking about starting another round of ATG either this week, or letting him go home for a few days and return later to get it. He had a round of ATG in September and the doctors feel like his counts should have went up, but they didn't. He was taken off of cyclosporine but now he is back on it. They are starting with low doses and are increasing his dosage every few days. They are not ruling out the possibility of a BMT. They are now in the process of checking the international registries. I hope he gets better soon. We have been stuck in this hospital since September and he is starting to get discouraged and unmotivated.

[evansmom]

What hospital is your husband being treated at? I'm sorry, but they are not following appropriate protocols for using ATG/cyclosporin to treat his AA.
ATG will NOT work if it isn't used properly.

I would be asking a whole lot of questions in terms of how experienced they actually are in treating AA. I would be looking to gettting a second opinion from a centre of excellence that knows how to treat AA properly.

This disease requires precise treatment, not half-hazzard guessing and experimentation.

[Dre's Wife]

He is being treated at Wake Forest Baptist Medical Center in Winston-Salem, North Carolina.

[mscrzy1]

Was your husband having major side effects from the cyclosporin? Evansmom is right. Your husband should have had continual dosage of cyclosporin up through March at the earliest, and many AA patients continue cyclosporin even longer than that. ATG doesn't work alone and the combo takes a while to take effect. You may want to ask your husband's medical team to call the AA experts at NIH to verify their treatment plan. If his drs. refuse or hem-haw your suggestion, you may want to be searching for another medical team.

[Dre's Wife]

He had a round of ATG then he was on cyclosporine. However, the cyclosporine caused his calcium levels to increase and he went into kidney failure. As a result, the cyclosporine was stopped and he had to be on dialysis to give his kidneys a rest and hopefully restart them. The dialysis worked and now his kidneys are functioning fine. So now the doctors have started the cyclosporine again. They started with a low dosage and are slowly increasing it while paying close attention to his calcium levels. In addition to everything else, my husband has an infection that keeps lingering around to different parts of his body. One of those infections is an old IV site that became infected. He has had three surgeries and isn't healing as fast as expected due to AA. He has even had pneumonia! Our life has been a roller-coaster ride since the end of September!!

[Hopeful]

I agree with everyone else. The best thing that you can do for your husband is to get him home and get a second opinion from someone with experience in the treatment of AA. Do not let him get another round of ATG without first consulting with an expert in this disease!

Why is he being kept in the hospital so long? What are his counts (HGB, ANC, and Platelets)?

^^^^^^^^^^^^^
Sorry - I didn't see your previous update before posting mine. ATG is hard on the kidneys and usually takes more than 3 months to work (especially if your husband is suffering from repeated infections). I still stand by my comments that he needs a second opinion before repeating the treatment.

[Greg H]

Hi Erica!

It must be a serious drag to be in the hospital for so long while making what seems like no progress.

You started out by asking whether immunosuppressive therapy is a viable option for treating AA. I think you can tell from the responses so far that the answer is yes. But plenty of folks also choose transplant.

You've gotten great feedback from folks on the standard approach to ATG and cyclosporine, but I think we all could probably agree that kidney failure might be a good reason to stop the cyclosporine. And I don't think we can blame the good folks in the hematology wing at Wake for the fact that Andre's kidneys proved to be more sensitive to CSA than the kidneys of some other folks.

Your docs, by reintroducing the CSA and gradually increasing the dose, are hoping to see some response, without trashing Andre's kidneys again. That seems like a very sensible approach and exactly what needs to be done before resorting to more ATG or some other drug.

That said, I'll bet, if it can be done safely, given the infection risk, procuring a discharge for Andre and letting him sleep in his own bed for a while would do worlds' of good for his morale (and yours).

A couple of folks have mentioned the National Institutes of Health, whose docs are very well-respected experts on AA. One thing that you might not have picked up on is that, if you can obtain an appointment at NIH, it will cost you and your insurance company nothing. You'll have to get to Maryland, of course, and pay for a hotel, but any testing and consultation would be free of charge, because NIH is a taxpayer-supported research institution. It may be an option worth pursuing, given that your husband's case is proving a bit more challenging than some. If you're going to take that step, it would make a great deal of sense to do it before bring more ATG or any alternative.

Take care!

Greg

[JodyW]

Erica

As I said in earlier post, Trev had been transfusion independent for a month or so when he began having Kidney problems due to the CyA. The Dr. didnt take him off the cyclosporin completly, but they did reduced it by half. Unfortunatly he began needing Hgb transfusions again. During that time he developed multiple infections in his pic line and then mediport and then another pic line. I was convinced he would stay on transfusion and a BMT or second round of ATG was going to be the only next chioce. Trevor had been recieving trans.. every three weeks. He would have been due for a transfusion this past Monday but im happy to say his Hgb came back at 9 and platelets at 113. That's the best news ever. Trevor was first diagnosed March 23 2011. My guess is on March 23, 2012 he will be transfusion independent with good functioning kidneys and no killer headaches. Hang in there , dont panic and keep asking questions..

[Neil Cuadra]

It sounds like Trevor has the right cyclosporine dose for the moment. Doctors often tinker it to find the right balance.

Keep up the good work!

[Dre's Wife]

The doctors are having to continuously adjust Andre's dose of cyclosporine almost daily because his creatin levels keep rising and they don't want his kidneys to shut down again. The doctors are doing all they can to let him go home for Christmas. Once discharged, he will become an outpatient until his doctors decide which direction they are going to head in next. His doctors are in the process of sending his medical information to NIH. I hope they can give some good suggestions as to heal AA.