1. < Blood Cancers & Disorders

What treatments are available for aplastic anemia?

Posted by alpinegirl @alpinegirl, Jan 7 1:06pm

as 86 years old and no health problems, seemed to have anemia
problem with hemogloblin down to 6 and several transfusions. need to know what type of treatment - for someone who believes in
the quality of life.

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rockitman | @rockitman | 3 days ago

I'm very sorry the treatment did not work for your wife.
I have been very lucky so far. I got my 5 day ATGAM (equine) treatment in February (1-5) 2023 and started taking Cyclosporine 400mg, Promacta 100mg, Prednisone 100mg, and an antibiotic. I was still getting blood and Platelet transfusions till middle of March. By April 1st I had started getting results and my platelets started raising and so did my blood cells. By December 2023 all my blood cells were (low end) normal and I had 275K platelet count. I had to start to ween off my Cyclosporin after 6 months, and had to ween off my Prednisone in just a few months, I stayed on Promacta till Jan 2024, then I had to completely ween off the promacta.
My numbers are dropping slowly, my blood cells are just .1 below normal, hemoglobin is good at 13, Platelets are down to 112K as of Yesterday's blood tests. I only take 50mg of Cyclosporine now. But I am fairly stabilized right now.
Moffit is not worried yet, and said they would increase my cyclosporin as needed, but can never resume promacta as it can also cause bone marrow damage if over medicated.
I am 77 and also cannot get the stem cell transplant.
I wish your wife the very best and pray she gets this under control.
My dr said they can repeat the ATGAM again if needed. But hopefully I can maintain my current health.

REPLY
Mentor
Patty, Volunteer Mentor | @pmm | 3 days ago
In reply to @joetex "I just found this group so my comment is late. My 82 year-old wife has had..." + (show)
@joetex

I just found this group so my comment is late. My 82 year-old wife has had severe aplastic anemia for a year. She was treated with ATGAM, Promacta, cyclosporine, at MDAnderson in Houston. She is not eligible for stemcell transplant. She slowly improved then declined and doctors said the treatment has failed. She goes in 3 days a week for bloodwork and gets platelets and blood once or twice a week. We are looking at a different followup treatment using campath which requires ten days of infusion in hospital and will leave her very weak. It has around 30% success rate. This has been a very difficult experience.

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@joetex
I am not familiar with Campath so I did a search. Looks like it has been replaced due to immunological risk with a new drug by the same brand. I’m so sorry that her previous regimen stopped working. Hopefully the replacement for Campath will be an option. Perhaps those more familiar with treatment options can shed some light.
Our director tagged a few members… @alpinegirl
@aeft @rockitman @yanis @leilab1 who might chime in.
Medical facilities run on a skeleton crew during the holidays and it may be hard to get anything scheduled. The ER is always an option for us in a medical emergency.
Will her oncologist/hematologist provide the follow up?

REPLY
2 replies
Mentor
Patty, Volunteer Mentor | @pmm | 3 days ago
In reply to @joetex "I just found this group so my comment is late. My 82 year-old wife has had..." + (show)
@joetex

I just found this group so my comment is late. My 82 year-old wife has had severe aplastic anemia for a year. She was treated with ATGAM, Promacta, cyclosporine, at MDAnderson in Houston. She is not eligible for stemcell transplant. She slowly improved then declined and doctors said the treatment has failed. She goes in 3 days a week for bloodwork and gets platelets and blood once or twice a week. We are looking at a different followup treatment using campath which requires ten days of infusion in hospital and will leave her very weak. It has around 30% success rate. This has been a very difficult experience.

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https://www.pharmaceutical-technology.com/news/cellectis-starts-alemtuzumab-revival-with-fda-orphan-drug-win-in-leukaemia/?cf-view

REPLY
joetex | @joetex | 3 days ago
In reply to @pmm "@joetex I am not familiar with Campath so I did a search. Looks like it has..." + (show)
@pmm

@joetex
I am not familiar with Campath so I did a search. Looks like it has been replaced due to immunological risk with a new drug by the same brand. I’m so sorry that her previous regimen stopped working. Hopefully the replacement for Campath will be an option. Perhaps those more familiar with treatment options can shed some light.
Our director tagged a few members… @alpinegirl
@aeft @rockitman @yanis @leilab1 who might chime in.
Medical facilities run on a skeleton crew during the holidays and it may be hard to get anything scheduled. The ER is always an option for us in a medical emergency.
Will her oncologist/hematologist provide the follow up?

Jump to this post

Thanks for the information. It was pulled for financial reasons actually to let the manufacturer bring out a higher-priced drug. They got a lot of criticism and it is now free to medical facilities for leukemia patients and others. There is immunological risk for sure, and that’s what we are having to consider in deciding to do the treatment. Thanks.

REPLY
joetex | @joetex | 3 days ago
In reply to @pmm "@joetex I am not familiar with Campath so I did a search. Looks like it has..." + (show)
@pmm

@joetex
I am not familiar with Campath so I did a search. Looks like it has been replaced due to immunological risk with a new drug by the same brand. I’m so sorry that her previous regimen stopped working. Hopefully the replacement for Campath will be an option. Perhaps those more familiar with treatment options can shed some light.
Our director tagged a few members… @alpinegirl
@aeft @rockitman @yanis @leilab1 who might chime in.
Medical facilities run on a skeleton crew during the holidays and it may be hard to get anything scheduled. The ER is always an option for us in a medical emergency.
Will her oncologist/hematologist provide the follow up?

Jump to this post

Her oncologist is definitely recommending Campath since he doesn’t think anything else offers a chance for improvement. A treatment with rabbit ATG is out because cyclosporin was too hard on her kidneys.

REPLY
1 reply
Mentor
Patty, Volunteer Mentor | @pmm | 3 days ago
In reply to @joetex "Her oncologist is definitely recommending Campath since he doesn’t think anything else offers a chance for..." + (show)
@joetex

Her oncologist is definitely recommending Campath since he doesn’t think anything else offers a chance for improvement. A treatment with rabbit ATG is out because cyclosporin was too hard on her kidneys.

Jump to this post

It must be hard on both of you when treatment stops working.
I’m appalled at what happens when pharmaceutical companies put profit over patient care. I guess uproar in this case served to be of benefit.
Best of luck with this.

REPLY
booker | @booker | 2 days ago
In reply to @joetex "I just found this group so my comment is late. My 82 year-old wife has had..." + (show)
@joetex

I just found this group so my comment is late. My 82 year-old wife has had severe aplastic anemia for a year. She was treated with ATGAM, Promacta, cyclosporine, at MDAnderson in Houston. She is not eligible for stemcell transplant. She slowly improved then declined and doctors said the treatment has failed. She goes in 3 days a week for bloodwork and gets platelets and blood once or twice a week. We are looking at a different followup treatment using campath which requires ten days of infusion in hospital and will leave her very weak. It has around 30% success rate. This has been a very difficult experience.

Jump to this post

My wife is 85. Her diagnosis is also aplastic anemia, still current after 7 weeks in the hospital and now for over 4 weeks at home. Meds: 3 cyclosporine and 1 Alvaiz daily, Vitamin B12, few others. For 3 weeks now her platelet level has remained at 21 without an infusion, and she now stays awake most of the day, has returned to cooking meals, moving around the house, even stairs, without extreme worry that she will fall. Helping also, we think, is her return to fruits, vegetables, nuts, greens, fish, poultry, and meats (hospital food wasn't always helpful). Not up to walking longer distance than a block or two, but hopeful. We know that she has a serious illness, currently incurable, and she is not a candidate for stemcell transplant.

REPLY
1 reply
joetex | @joetex | 2 days ago
In reply to @booker "My wife is 85. Her diagnosis is also aplastic anemia, still current after 7 weeks in..." + (show)
@booker

My wife is 85. Her diagnosis is also aplastic anemia, still current after 7 weeks in the hospital and now for over 4 weeks at home. Meds: 3 cyclosporine and 1 Alvaiz daily, Vitamin B12, few others. For 3 weeks now her platelet level has remained at 21 without an infusion, and she now stays awake most of the day, has returned to cooking meals, moving around the house, even stairs, without extreme worry that she will fall. Helping also, we think, is her return to fruits, vegetables, nuts, greens, fish, poultry, and meats (hospital food wasn't always helpful). Not up to walking longer distance than a block or two, but hopeful. We know that she has a serious illness, currently incurable, and she is not a candidate for stemcell transplant.

Jump to this post

She has had a great response to her treatment, it sounds like. Was she given a major treatment while in the hospital, such as horse ATG? Is she on Promacta? I think you are both fortunate with where she is now. So good to hear it.

REPLY
booker | @booker | 2 days ago

Thank you. I don't know that she was give horse ATG. Not on Promacta. Thanks for your encouraging thoughts.

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