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  #1  
Old Thu Nov 9, 2017, 08:36 PM
hope50 hope50 is offline
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SVAA-HORSE ATG + CYCLOSPORINE need some help

Hello everyone,
My mom was diagnosed with SVAA 2 months ago, after 3 bone marrow biopsy. At the end of September she had H-ATG + CYCLOSPORINE treatment and everyday shot (I don't remember the name) to increase her WBC. Six weeks after the treatment she hasn't had any improvement, she is transfusion dependent for platelets and blood. WBC .4 -.8, Platelets under 10.
She's been in the hospital for the past 8 weeks. After her ATG treatment she got blood infection from the IV, she's on antibiotics for the past 6 weeks. The bacteria created a clot in the right valve of the heart and it"s still there.
She got pneumonia and sepsis which put her in intensive care for a day due to septic shock. It was a very difficult period for her and us, especially when she showed some signs of delirium. Today she doesn't need the oxygen tank, she's doing fine on her own and she doesn't have any delirium signs.
A week ago she got infection (fluid build up) in the anus area for which she's taking antibiotics.
She has no appetite and if she eats anything she vomits, and she sleeps all day.
Yesterday one of the doctors told us that she wants to put her on Campath (Alemtuzumab), she also said that she wants to do another bone marrow biopsy. This was a change of plan because at the beginning of treatment we were told that after ATG treatment she was going to be put on Promacta. We can't afford to buy the medicine.
Does anyone know how or where we can get Promacta at an affordable rate?
Does anyone have experience with Campath?


All comments and experiences will be appreciated.

Thank you.

Last edited by hope50 : Thu Nov 9, 2017 at 09:36 PM. Reason: added more sentences
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  #2  
Old Fri Nov 10, 2017, 12:05 PM
Hopeful Hopeful is offline
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Hi hope50,

I am very sorry to hear about your mom.
It sounds like the repeated infections are taking a toll on her counts. Is she at home and infection free now?

I'd be nervous about throwing even more drugs, like Campath (another immune suppressant), at her right now. It takes many months before most people see the positive effects from the ATG. A repeat BMB is a good idea.

How old is your mom and where are you located? You may be able to find a clinical trial near you for Promacta or you could consult with the experts at NIH. You could also try writing the manufacturers of Promacta and sharing your story. Some people have had success with this on this forum.

Best of luck to you and your mom!
__________________
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.
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  #3  
Old Fri Nov 10, 2017, 02:42 PM
hope50 hope50 is offline
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Hi Hopeful,

Thank you for your response.
My mom is 67 years old and she is still in the hospital at Colombia Hospital NYC. We live in NJ. She's been there since September 12 2017. She had ATG treatment September 27 till September 30. It's been 6 weeks since ATG and still Platelate (3 per week) and blood ( 1 every four days) transfusion dependent.

I myself don't agree with Campath treatment, I would prefer to wait for a few weeks (at least till the infections are cleared) to see any response from the ATG and Cyclosporine treatment. If there are no results from the first round of ATG, I would prefer a second round of ATG rather than Campath.

My biggest concern is that she's getting too many transfusions.
Is there a specific time period when Promacta needs to ba taken after ATG treatment to have better results?

We are hoping for the best.

Last edited by hope50 : Tue Dec 5, 2017 at 09:27 PM.
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  #4  
Old Mon Nov 13, 2017, 12:44 PM
Hopeful Hopeful is offline
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Hi hope50,

I hope the hospital is getting a handle on your mom's infections. That should be their number one concern right now. Infections will burn through RBCs and platelets, thus requiring frequent transfusions in someone who has already has an empty marrow.

I think you are wise to push back on the Campath. ATG/Cyclosporine is the gold standard for the treatment of AA. However, even if she wasn't having severe repeat infections, it would take 3 months for an early responder to note a change in their counts! For most, it can take 6-9 months to see a response. I have never heard of someone trying Campath 6 weeks out from ATG.

Campath will hold the lymphocytes down for a longer period of time than ATG, making your mom even more susceptible to infection. There was a kind soul on this forum (Greg H) who had some success with Campath for MDS, but it was used as a first line of treatment for him - not after ATG.

If she were my mom, I would focus on getting her infection free. Her marrow can't heal if she is continually fighting severe infections. What is her ANC now?

Promacta is a new addition to the treatment regimen of ATG/Cyclosporine. It is still part of many clinical trials at NIH. So, they are still learning best practices with regards to its administration. Since you are in the area, when your mom is out of the hospital, I would recommend consulting with NIH to see if she is a candidate for a clinical trial with Promacta. Then she would get the drug for free.

I hope you and your mom find continued strength!
__________________
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.
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  #5  
Old Tue Nov 14, 2017, 09:33 PM
hope50 hope50 is offline
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Hi Hopefull.
Her blood count today were: Wbc 0.48, Rbc 2.21, Hemoglobin 6.4, Pl 51 (she had pl transfusion night before). Today she had blood transfusion 1unit.
Tomorrow she will have bone marrow biopsy. She had 3 before Atg, but this time I'm scared, because of her very low wbc and 3 infections already.
But doctors orders what can I do.
Her bilirubin total is to high 4.9 and I sow her swollen legs and yellowish eyes. Doctors keep saying that thay had control, but I don't think so.
I pray so much that every thing goes fine tomorrow and after.
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  #6  
Old Thu Nov 16, 2017, 01:54 AM
Hopeful Hopeful is offline
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hope50,

I hope your mom is doing okay and that they are trying to address her issues.

Don't be afraid to question your doctors or ask for a second opinion/evaluation, even at the same hospital if necessary. Trust your instincts if you think something isn't right.

You are in my thoughts.
__________________
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.
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  #7  
Old Sat Nov 25, 2017, 01:56 PM
hope50 hope50 is offline
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Hi Hopeful.

The reason why I'm writing so late is because I was waiting for some good results. But unfortunately nothing good is happening.
First she got a small intervent in the anus area, when they left a small tube to let the fluid(infection) drain out. 
After that she had a scan for her clot in the valve and still there even after 6 weeks on antibiotics.

Pneumonia is getting worse. Yesterday the doctor removed the water that was around the lungs. Today they took a sample of the bacteria in the lungs that caused pneumonia.....
Question??? So why they didn't do this weeks before, and find the name of the bacteria so they can give her the right antibiotic?


Also today her doctor told me that he stopped giving her cyclosporine. The BMB shows to him that the bone isn't producing any new cell, (cellularity 5%)...and her liver isn't so good.
So he stoped cyclosporine and maybe (god help us) we will start with promacta next week. 
Can this work???
Please I need some opinion...?
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  #8  
Old Sun Nov 26, 2017, 03:03 PM
Hopeful Hopeful is offline
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I am sorry to hear that your mom is still struggling with infections. I imagine the doctor's main concerns are to get the infections under control and restore her liver functionality. Both cyclosporine and Promacta are hard on the liver. So be sure that you are consulting with someone with experience with Promacta to make sure that it makes sense for her. None of these drugs are benign.

For example, this was taken from the Promacta website:
"Boxed WARNING: What is the most important information I should know about PROMACTA? PROMACTA can cause serious side effects, including: Liver problems."

Infections will burn through both red blood cells and platelets and can cause an empty marrow. Have they tried G-CSF to help her ward off infections? I am not a doctor or a medical expert. I am just trying to give you more options to discuss with her doctors.

I hope they can get her pneumonia under control.
__________________
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.
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  #9  
Old Mon Nov 27, 2017, 09:01 PM
hope50 hope50 is offline
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Hi Hopeful and thank you so much for your response.
I know that you are not a doctor but your advice are very professional and helpful for me. I have read some of your replays to other members and help me a lot.
Even I don't know you as a person you are such a lovely and good heart person that help as much as you can every body. God bless you

I know that my mom was taking every night a shot for the white cells but I didn't know the name. As you mention G-CSF, today I asked the nurse for the name.
It was called GRANIX. Of course I google for this medicine and I became more confused.
More I search more I read about FILGRASTIM. And I don't understand why they didn't give FILGRASTIM to my mom??? It's more expensive or what?!
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  #10  
Old Wed Nov 29, 2017, 11:49 AM
Hopeful Hopeful is offline
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Hi hope50,

I think GRANIX is just another formulation of G-CSF. The more traditional one that I have seen here is Neupogen. I don't know what the difference is between the two formulations though.

Is your mom's pneumonia under control? Has her liver functionality improved? Is she still in the hospital? If she still has an active viral infection, that will lower her WBC.

Was she ever tested for hepatitis?
__________________
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.
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  #11  
Old Sun Dec 3, 2017, 03:31 AM
hope50 hope50 is offline
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Hi
She is still in the hospital (almost 3month).
Pneumonia is under control but still there. Her liver fortunately is improved so it was from cyclosporine. She had started promacta 50mg. Her blood count are very low and normally she is transfusion depended (platelets and blood). She feels very tired and had difficulty to breath. I hope and pray that promacta do "a miracle" and have my mom back home healthy.
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