Home         Forums  

Go Back   Marrowforums > Treatments > Drugs and Drug Treatments
Register FAQ Search Today's Posts Mark Forums Read

Drugs and Drug Treatments ATG, Cyclosporine, Revlimid, Vidaza, Dacogen, ...

Reply
 
Thread Tools Search this Thread
  #1  
Old Sun Dec 18, 2016, 02:36 PM
Victoria W Victoria W is offline
Member
 
Join Date: Dec 2016
Location: Rock Hill, SC
Posts: 2
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
Reply With Quote
  #2  
Old Sun Dec 18, 2016, 03:50 PM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,304
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
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
Reply With Quote
  #3  
Old Sun Dec 18, 2016, 03:55 PM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,304
Blood Journal - HiCY

http://www.bloodjournal.org/content/...o-checked=true
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
Reply With Quote
  #4  
Old Sun Dec 18, 2016, 04:38 PM
Victoria W Victoria W is offline
Member
 
Join Date: Dec 2016
Location: Rock Hill, SC
Posts: 2
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
Reply With Quote
  #5  
Old Mon Dec 19, 2016, 12:25 AM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 665
Patience

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.
__________________
50 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.
Reply With Quote
  #6  
Old Mon Dec 19, 2016, 10:09 AM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,304
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.

Marlene
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
1 year after high dose cyclophosphamide treatment amandana AA 2 Sun Aug 26, 2012 12:06 AM
Was my dose of cyclosporin too high glitterandlace AA 10 Tue Jun 5, 2012 02:17 AM
Question about High Dose Cyclophosphamide Dre's Wife AA 3 Sat Feb 11, 2012 04:07 PM
Recently completed High Dosage Cytoxan regimen at Johns Hopkins. Ask me anything. Technique21 AA 20 Tue Jan 10, 2012 08:37 PM
High dose cyclophosphamide at Hopkins? michelle_lapuz AA 28 Tue Jan 12, 2010 02:04 AM


All times are GMT -4. The time now is 02:53 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2018 Marrowforums.org