Aranesp Question

[Zoe]

I have been on Aranesp since Feburary of this year. Initially on 200mcg every 2 weeks, they upped me to 300mcg, this boosted my hgb into the 11 range. Very nice. Since May however, when I hit my high of 11.9 I have dropped just a little every draw. Last lab showed 10.8. I realize that is not really low with MDS, however, I am wondering if this is the beginning of the end of Aranesp for me.

Any one start a decline with Aranesp or Procrit then bounce back up? I seem to be very sensitive to my hgb levels. Sitting at 10 is an effort. Once I hit the 9 range, I am worn out. Life is really busy right now, with no hope of changing soon, I really need to hold on to my energy level.

Zoe

[CarolineG]

Zoe

My Dad has had to change dosages and frequency of shots for the entire year that he has been taking Aranesp. Right now we give him 60 units every second week. His hgb is slowly dipping. A shot used to boost him from 120 to 145 and we would give him a month to let his hgb drop to 120 again before he needed another shot. Now, for the past couple of months I have been giving him a shot every second Friday and he remains between 107 and 112. Once he gets down to 100 and stays there I would assume that they will boost the dosage again. At one time he was taking 150 units at a time.

Hopefully, your life will slow down soon so that you can save your energy. Maybe you need to rest more.

Caroline

[Neil]

Hi Zoe,
You experience with Aranesp is much like mine. Have been on it since 6/29/06 after almost 3 years on Procrit.
My HGB has bounced around from 11.9 to 10.5. It seems that it will drop with one injection and go up with the next. Can’t really say it has been consistent. I started at 200mcg and went to 300.
Amgen and J&J want a dosage that will keep HGB at 12.0 or lower to avoid any possible clotting or heart issues,
I do not feel much difference between a period when I am at 10.5 vs 11.5. Am on a 3 week interval between shots. Suspect my counts would be a little higher if it was a 2 week interval.
If you feel your counts are getting lower over time you might want to discuss raising the dosage. An increase in dosage and a longer interval between injections might be a possibility. It is a lot more convenient.

[Zoe]

Thank you both for your responces. It helps me feel better. I have tried to reach my nurse practitioner (sp?), but have not received a response. That is unusual, so I am going to follow up on Monday.

Caroline, you said, “Maybe you need to rest more.” Yeah, I know, my mother tells me that all the time. With a 12 year old and 2 fifteen year olds at home who all love to stay busy in different activities, it is hard. I want them to stay involved in healthy, fun activities.

Neil, I will ask about increasing the dose and speading them out more.

I feel more hopeful now, thanks again,
Zoe

[celebrations]

Zoe, I think we’ve met on marrowforums…I feel the way you do.
I give myself EPO shots once a week.
I started in April, when my Hgb was on 9,0..then it has developped well due to the EPO up to 11,3…I never have increased the dosage so far.
Since about two months the Hgb drops slowly, last time it was 10,0 only!
Although my hemo isn’t concerned yet, I AM
cele

[Zoe]

Celebrations,

Yes, we have met over there.

I don’t want to hit 10 again for a long time. I wonder why some of us seem to notice smaller changes, while others can maintain a regular routine at levels as low as 8. I can function at 10, it just takes a lot more effort. I have 3 more weeks until my next lab. Sometimes that helps me forget about it, sometimes I find myself paying too much attention to my energy level and palm color. I was at the point where I didn’t think about MDS much, I am working to get my mind back in that place.

My fear is that it will keep dropping. If it stays here for a while I will calm down.

My girls are all gone for the weekend. So I have rested and putzed around the house, enjoying the break.

Zoe

[CarolineG]

Zoe,

I had the same question that you do. Last week I had the opportunity to ask my Dad’s Kidney Specialist why Dad’s hemoglobin was 107 that day and yet all he wants to do is sleep around the clock. I was told that Dad is also anemic and that in his case the lack of iron in the blood affects his hemoglobin which in turn affects his energy level. Then they gave us a prescription for Iron Pills.

Maybe you are low in iron. It should show on the same blood test as the rest of your counts.

Hope this helps a bit.

Isn’t it quiet and odd when they are not home? Mine are 22, 21 and 19. All live with us and are very busy as well. Between them, their friends and their horses, it is never quiet here. I understand how busy you are.

Blessings,
Caroline

[Zoe]

I don’t know what my iron levels are. They haven’t been checked in quite a while. Last check ferritin was running on the low end of normal, but within normal, same with iron, TIBC. Saturation was in the middle of normal. BMB’s show no iron in the marrow.

I was taking iron, but have been instructed not to, due to the MDS. Taking it seems to make no difference in the absence of marrow iron.

It is really quiet without my girls and I miss them, but I think I am going to take a nap before they come home today. They have called and kept me up to date on the latest while they are gone though :^)

Zoe

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