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  #1  
Old Wed Feb 22, 2017, 05:47 PM
Spideog12 Spideog12 is offline
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Survival outcome for people aged over 70 years with SAA

Hello,
I am new to Marrowforums. I need to find out what is the prognosis for a person aged 80 years of age of recovering/surviving from severe aplastic anaemia. How long potentially could a person of this age continue to live for after a course of ATG / cyclosporine.
Secondly how important is infection control / barrier nursing before, during and after the treatment. Any information would be greatly appreciated. A very concerned son.
Certa Bonum Certamen.
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  #2  
Old Wed Feb 22, 2017, 09:06 PM
Neil Cuadra Neil Cuadra is offline
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Spideog12,

You are doing the right thing by asking questions and gathering information. Look for as many sources as you can.

Many physicians will hesitate to predict the lifespan of a patient because they don't really know the answer. Patient statistics provide data, but outcomes vary so much from patient to patient that statistics can be misleading. Unfortunately, when physicians make an educated guess, some patients treat it as fact, rather than the estimate that it is. It would be even harder for laypeople like us (forum members) to give you a useful prediction.

One thing we can do, however, is to identify the factors that affect the prognosis. Age matters, but the exact age may not be as important a factor as general health and the types of other health problems the person has. It's also important to note which blood counts are low, and how low they are, because that's directly related to risk.

When it comes to ATG, you'd compare possible outcomes with ATG and possible outcomes without ATG. With ATG, you risk the side effects of treatment and of blood counts getting worse before they get better. Without it, the person would probably get transfusions and/or growth factors to maintain blood counts and the risk is that this type of supportive care wouldn't continue to help over time. Unfortunately, death can be the outcome in either case, from treatment or from lack of treatment. For this reason, physicians with SAA experience, and who know the patient's personal history, should give the advice.

On the positive side, successful ATG can give people a normal lifespan.

I think "barrier nursing" refers to protecting doctors and nurses from patients who might infect them, and that doesn't apply to SAA patients. But infection control for a patient with a low white blood cell count is definitely a key part of care, no matter what treatment is used. When a person's platelets are low they should take extra precautions against falls or other injuries. A person with a low red blood cell count should avoid over-exertion, because they have limited energy capacity. These precautions depend on blood counts, no matter what phase of treatment you are in.
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Old Wed Feb 22, 2017, 11:43 PM
Spideog12 Spideog12 is offline
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Thank you Neil for your prompt answer.
All three blood counts extremely low. Washing of hands by some staff not carried out. Also when sent for CT scan in another part of the hospital no facial mask was given. My mother had to pass through the main public corridor of a very busy hospital on her bed during public visiting hours. No private corridor linking her building to diagnostic department which I feel is shocking under the circumstances. Not just for my mother but for other vulnerable patients whose immune systems are compromised. I accompanied my mother on this paticular occasion and observed it at first hand.
I have concerns about the consultant heading up the team and possible lack of dealing with enough such cases in the past. I challanged him on one occasion with respect to my mother's condition with a number of questions and I felt I was given short shrift with vague answers to my questions. I got the distinct impression he was not comfortable with being quizzed in front of his understudies. Not at all happy.
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Old Thu Feb 23, 2017, 01:21 AM
Hopeful Hopeful is offline
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Hi Spideog12,

I remember reading an article about treating SAA in the elderly. When looking for it, I stumbled upon this slide presentation that you may find interesting:

https://www.ebmt.org/Contents/Resour...helliFinal.pdf
__________________
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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Old Thu Feb 23, 2017, 09:14 AM
Spideog12 Spideog12 is offline
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Thank you Hopeful.
I had come across this slide presentation a number of weeks ago and found it quite revealing. If there is anybody who would like to share their experience of receiving proper nursing care while undergoing SAA treatment in a hospital setting I would be most grateful.
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Old Thu Feb 23, 2017, 11:51 PM
Hopeful Hopeful is offline
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Spideog12,

I could tell you a lot of horror stories! Be vigilant!

I was supposed to be in a private isolation room. That is the ideal scenario. Everything comes to you. However, my hospital was overcrowded and I got bumped to a less than ideal room very quickly.

I would highly recommend that you bring a big bottle of hand gel and put it in a prominent location, if this is not standard practice at the hospital. Insist that everyone gels up when entering the room. That was standard practice.

Bring your own hospital grade masks to filter out airborne bacteria for your mother to wear when others are in the room or when she is being transported throughout the hospital. Give her a box of gloves to use when she is walking around and touching public things at the hospital.

If you can be her eyes and voice during the days that she is receiving the ATG, that would be most beneficial. Her ANC will bottom out close to 0 before it rises again. Make sure all of the nurses/doctors are following proper protocol. The first night will be the scariest.

I had a ton of different nurses, some very good, some not so much. My best nurse told me that I should be adamant whenever someone cleaned the tubes of my port with alcohol - that they wipe it vigorously for the full 30 secs with alcohol and then let it dry (for 30 sec??). That was protocol. It wasn't a quick swipe.

Do you have a choice in facilities? You really want to be at a place with experience treating SAA with ATG so that they know how to respond.

Wishing you and your mom the best!
__________________
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 Fri Feb 24, 2017, 03:44 AM
Spideog12 Spideog12 is offline
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Thank you so much Hopeful for your response.
I knew things were not right. I feel they gave up on her too easily. Very same as your own experience. Some nurses were excellent and some were less than adequate. I will do my utmost to make sure this substandard of care is rectified.
People need to stand up and not be intimidated to ask as many questions as possible regarding the care of a loved one.
My advice to anyone in this situation is to get your family on board and to liaise with the consultant on a daily basis. Get up to speed on the terminology of the disease and if you are not happy with what is going on voice your concerns in the strongest manner possible. Believe me it may be the difference between life or death.

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