requesting Neil's help

[bety]

Neil, because you are so knowlegable and have a diagnosis similar to my husband’s, Chris advised me to consult with you regarding my husband’s condtion. He was dx with
RARS following a BMB July, 2003. Despite low counts, and a young age of 83 at that time, except for cold hands, etc. he felt well. I am 6 and 1/2 years younger and do not have his energy.
After the diagnosis, he was given aranesp every two to four weeks. Initially, his hgb was kept at about 11 . Gradually, the counts declined despite an increase in dosage. In Feb. of this year, his hgb dropped precipitously to around 8. His wbc had always been low, ranging from 2.4 down to .9. Neupogen helped bring the wbc up to 2, but his hgb dropped to 6.7 (this past Thur). He had his first two tx packed red cell units on Fri. So far, he does not feel any different.
I asked his hem. if we should discontinue his iron medication. He said that since his ferritin level is within range, it could be discontinued.
I thought that because he might become tx dependent, iron might be contraindicated.
Yesterday and today he had a mild nosebleed. Platelets are at about 98.
A few months ago, our h said we should consider vidaza as a possible treatment. Because of the low counts and the terrible side effects that many patients have, I was afraid to start the Rx.
What are your instincts? Do you think he should continue with the iron? What do you think about vidaza and aranesp?
I have asked you enough for now. I don’t want to turn you off. I would appreciate your input.
All the best, bety

[Neil]

Hi Bety,
Would discuss any thoughts we exchange with his hemo.
Aranesp needs iron to function properly.
What dosage is he getting? 200mcg, 300mcg?
There is a balancing act to maintain with dosage. Too high and there are heart related risks (dependsopuon how high is HGB gets, dont want to exceed 12.0).
IF Aranesp seems to becoming ineffective has his doc considered a switch to Procrit?
Vidaza has its risks. Counts usually go down for a while. Does the doc have a plan on how to support his counts till/if they rise?
TX might be a means to get him back on track. It will take around 25 TX before ferritin issues arise, but you might want to consider his age on this point. Not sure how ferritin rate increases in one that is 83. Normally it takes about 14 years of TX before ferritin becomes damaging.
Platelets at 98 seem to be pretty good. Has the doc examined them for quality? How about clotting time? Any bruising, petrechiae?
Would also keep him in touch with his internist. Too easy to have other health issues come up while focusing on RARS. Don’t want anything to get out of hand.
How long has it been since his last BMB? Might want to see if there have been any changes.

[bety]

Neil, thank you for your rapid response and very helpful insights.
My husb is getting 300 mcg aranesp every 2 weeks. Up until Friday, he has been taking iron supplements. I thought he should stop taking them because I was afraid that the extra iron might be contraindicated now that he is becoming tx dependent. I did not realize that it takes several years for iron buildup to take place.
I’ve read that procrit is sometimes more effective than aranesp, but I don’t think my husb can tolerate the frequency. As it is, he is so depressed with every medical contact.
I am reluctant for him to have another BMB because of the discomfort and the big drop in his counts that came with it. This could have been a coincidence.
Although he was Dx in ’03, his counts have been dropping intermittently and gradually for the past 10 years. Because he felt well, we did not persue a consultation.
I’ll have to ask if the platelets have been examined for quality or clotting time. He has no bruising, petichiae, or bleeding gums
but suffers from rare but occasional nosebleeds. Our internist has been following his vital signs, which are generally within range. Systolic hypertention, which has been reduced significantly with juicing carrots and celery, has been an issue. We monitor his b/p closely. Because of the aranesp side effects (they tend to lower blood counts), we try to avoid b/p medication.
——————-
Husb:age 86, Dx 7/’03. RARS, pancytopenia with multilineage dysplasia. No abn. chrom. Now, non-responder to aranesp. Responds to neupogen. First tx Aug. 11, 2006

[Neil]

Hi Bety,
would look at increasing the Aranesp or trying Procrit.
If it increases his reds he should feel better and resolve the depressed feeling.
If he has not had a BMB for an extended time the results might be revealing/informative. He can be sedated if he has difficulty with them.

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