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

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  #1  
Old Wed May 21, 2014, 01:40 PM
ussoccer004 ussoccer004 is offline
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ATG+ Cyclosporine

Hello guys, I had some questions and concerns and from the veterans who have gone through this already any feedback is greatly appreciated. I have PNH already and my ANC is constantly .5 with a WBC of 1.9-2.1, Hemoglobin is at 10 and platelets are at 130K. My lymphocytes stay around .8.

I have talked with my doctor and have gone to the NIH about my condition, they believe it all started because of the EBV (epstein barr virus) and turned into autoimmune aplastic anemia. I respond well to Prednisone which bring my counts into the normal range and currently I am on Soliris which has been a miracle drug in my perspective and what I was dealing with before Soliris.

My fear in starting ATG+ Cyclosporine is the JC Virus, which I am reading a majority of the population has the virus but due to a healthy immune system lies dormant. We are wanting to try ATG+ Cyclosporine to bring my counts into normal range again and see if I maintain these counts.

I have read of patients with worse ANC of .2 and .0 going forward with ATG, minus the side effects of the drugs they have a positive outlook based on the drugs.

Is the fear of JC Virus/ PML a legitimate concern with this treatment?

At this point I understand the risk of MDS or any cancers, I am just tired of getting sick from the low white blood counts.
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Old Wed May 21, 2014, 11:25 PM
Cheryl C Cheryl C is offline
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My WCC and other counts are normally lower than yours, but I manage to keep well most of the time. I used to get lots of infections. A couple of natural easy things I've found helpful in avoiding infections (you may already be familiar with these):

1. Avoid foods containing cane sugar. Unheated honey is fine.
2. Take 5000 mg Echinacea and a product containing astragalus as soon as you feel a sore throat starting and continue until the soreness is gone.
3. Be fanatical about hand washing.
4. If you are prone to urinary tract infections, have cranberry capsules on hand and take them on the slightest hint.
5. Coconut oil is an antiviral. Read more on http://www.coconutresearchcenter.org/index.htm
6. Clean wounds/bites with hydrogen peroxide ASAP.

All the best!
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Thu May 22, 2014, 12:36 AM
Amz904 Amz904 is offline
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Hey ussoccer004,

I actually got ATG and cyclosporine when my ANC was .0 and my WBC was " less than 0.1" in early January. Due to my low counts I did face a small rough patch with my fair share of infections/viruses. But thanks to some heavy duty antibiotics, I made it through fine and have been infection and fever free since the end of February! (My counts now are ANC: 0.5 WBC: 1.0 with the numbers continuing to rise)

Have you talked to your doctor about maybe getting Neupogen shots? They can help boost your WBC temporarily after treatment while your body starts making WBC on its own to help lower your chances of getting any of the viruses you fear! In my case since my counts were initially so low, the shots never worked (probably since there was nothing happening in my bone marrow for the neupogen to stimulate) but in your case since there is at least something happening in your bone marrow, theres a good chance it can help!
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Old Thu May 22, 2014, 09:09 PM
ussoccer004 ussoccer004 is offline
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Join Date: Feb 2014
Location: Orlando, FL
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Quote:
Originally Posted by Amz904 View Post
Hey ussoccer004,

I actually got ATG and cyclosporine when my ANC was .0 and my WBC was " less than 0.1" in early January. Due to my low counts I did face a small rough patch with my fair share of infections/viruses. But thanks to some heavy duty antibiotics, I made it through fine and have been infection and fever free since the end of February! (My counts now are ANC: 0.5 WBC: 1.0 with the numbers continuing to rise)

Have you talked to your doctor about maybe getting Neupogen shots? They can help boost your WBC temporarily after treatment while your body starts making WBC on its own to help lower your chances of getting any of the viruses you fear! In my case since my counts were initially so low, the shots never worked (probably since there was nothing happening in my bone marrow for the neupogen to stimulate) but in your case since there is at least something happening in your bone marrow, theres a good chance it can help!
I think neupogen is probably the way to go at this point. Are you aware of any long term side effects? Being on the shot for years. I am happy atg worked for you. I also hope it keeps getting you to where we should be.
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Diagnosed PNH 2014/ Autoimmune AA 2006 treated with prednisone/ Hemoglobin 10.1; ANC .55; Platelets 150K
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  #5  
Old Thu May 22, 2014, 09:13 PM
ussoccer004 ussoccer004 is offline
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Join Date: Feb 2014
Location: Orlando, FL
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Quote:
Originally Posted by Cheryl C View Post
My WCC and other counts are normally lower than yours, but I manage to keep well most of the time. I used to get lots of infections. A couple of natural easy things I've found helpful in avoiding infections (you may already be familiar with these):

1. Avoid foods containing cane sugar. Unheated honey is fine.
2. Take 5000 mg Echinacea and a product containing astragalus as soon as you feel a sore throat starting and continue until the soreness is gone.
3. Be fanatical about hand washing.
4. If you are prone to urinary tract infections, have cranberry capsules on hand and take them on the slightest hint.
5. Coconut oil is an antiviral. Read more on http://www.coconutresearchcenter.org/index.htm
6. Clean wounds/bites with hydrogen peroxide ASAP.

All the best!
Definitely will be looking into this. Have you ever had mouth ulcers/ sores on the inside of your mouth? Canker sores?
__________________
Diagnosed PNH 2014/ Autoimmune AA 2006 treated with prednisone/ Hemoglobin 10.1; ANC .55; Platelets 150K
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  #6  
Old Sun May 25, 2014, 02:20 AM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
Yes ussoccer04 - I used to get mouth sores but not for a long time now. Coconut oil pulling, or swishing around Active+ antibacterial Manuka honey (Medihoney is a common brand) are very good for mouth sores.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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