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Victoria W Sun Dec 18, 2016 01:36 PM

Questions about High Dose Cytoxan
I have recently been diagnosed with SAA and was started on cyclosporine/ATG. I've been on cyclosporine for about two months but it does not seem to be working. My doctor is starting to get things set up for high dose cytoxan while we wait to see if the cyclosporine starts working.

I was just wondering if anyone has done this treatment and their experience with it. Just trying to get some information from someone who has gone through it

Marlene Sun Dec 18, 2016 02:50 PM

Hi Victoria,

My husband John did High Dose Cytoxan as his first line treatment back in 2002 at Johns Hopkins. I would suggest, if possible, to meet with Dr. Brodsky at Hopkins for a consult. He ran the clinical trial and has the most experience with this treatment. One big factor in successful outcomes is experience and Hopkins has done the most high dose cytoxan treatments for AA as well as the use of High Dose Cytoxan post BMT to minimize Graft vs Host disease.

HyCy is like doing a BMT without getting the transplant so it takes longer to recover your blood counts.

John had a difficult time with it but he's been in partial-stable remission since 2004. He was not a candidate for a BMT since they did not do them for someone his age. He was 50 yrs old at the time. So his choice was ATG or HiCy.

Everyone's experience is different. Some sail through it but like BMTs, it is hard on a person. I view the treatment as having 3 parts. First the chemo....4 days of feeling like you've hit by a train. Then the period where your counts bottom out and you are the most vulnerable at this time when you're waiting for your bone marrow to kick back in. This is probably the most challenging part. Your'e on lots of meds like anti-biotics, anti-fungals and anti-virals. You'll most likely have some issues to deal with like a fever, etc. The third part is once your bone marrow starts working again, then you are in recovery. This can take a while too. John was still transfusion dependent for 20 -22 months post treatment, which was atypical. Most are transfusion free by 11 months.

He was out of work for one year and then part time for another.

The expectation was that he would be at Hopkins for two months. Usually, the white count kicks in enough that you are able to be discharged by to your local doc for supportive care like transfusions, injections of growth factors, etc.

John's white count did not kick in for 3 month which complicated things. He also had complications to his bladder from the cytoxan that kept him in the hospital for two and half months. All in all, we spent four and half months at Hopkins.

John was on the extreme end of the bell curve regarding expectations. He was very healthy prior to the SAA and was expected to do well. What we found is that no one can predict how you'll respond or react to the treatment. The best thing is to do your research on all options... attempting a second AGT, HiCY or BMT. If you can, get an appointment at Hopkins with Dr. Brodsky. He is in the best position to explain the ins and outs of the treatment. He also has the latest statistics on outcomes and expectations. Back in 2002, HiCy success rates where higher when it was used as a first line treatment. In other words, people who did not respond to ATG or if they relapsed after multiple ATG treatments, did not respond as well to HiCY. But please verify this as it may have changed.

As with any treatment, things can and will go wrong. It's not usually a matter of "if" but more like "when". So it's important to be at a hospital or with a doctor who is familiar with all that can go wrong and knows how to respond effectively. Experience really does count when it comes to managing these diseases.

We did a lot things with nutrition and alternative healing once we got back home to help his recovery. It's safe to say that even though John's red cells and platelets never fully recovered, he can lead a normal life. HGB holds in the 11 -12 range and platelet 90 - 110K. All very livable. His immune systems seem to work very well too.


Marlene Sun Dec 18, 2016 02:55 PM

Blood Journal - HiCY

Victoria W Sun Dec 18, 2016 03:38 PM

Thank you for sharing your experience. My doctor is from Hopkins and worked with Brodsky. He has explained things fairly well but I was just wondering what it was like coming from someone who went through it. Thank you. This helps me a lot

Hopeful Sun Dec 18, 2016 11:25 PM

Hi Victoria,

I would give the ATG/cyclosporine treatment a full 6-9 months, and look for any sign of improvement, before considering other treatments. Early responders can see improvements in 3 months. For the rest of us, it can take longer.

Marlene Mon Dec 19, 2016 09:09 AM

Hi Victoria,

That's good that your doctor is familiar with HiCy. Let me know if you have any more questions regarding this and I'll answer the best I can.

Wishing you the best going forward.


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