MDS/RARS/No chromosone problems

[franb rars dx 12/06 age 57]

Hi All,

Just wanted to get some feedback, just dx late last year, not on any treatment yet. Last visit my hgb was 9.5, was told when it goes below that, hematologist wants to give me Aranesp Inj.
Since that visit, I’ve had weird feeling like ears popping along with dizziness. Can anyone tell me what symptoms they experienced when their hgb gets low? Any experience with Aranesp and how it worked for you? At what point do they give you blood? I am reluctant to start on the Aranesp Injections, but figure I’ll have to, if I keep feeling this way. Thank you and hang in there everyone!

[Zoe]

I just started Aranesp when my hgb was around where yours is. I felt exhausted! Took naps every day, needed frequent breaks, if I looked at my calender and it had more than 2 things scheduled, I would feel like crying because it felt so overwhelming to me. I know some people function well on much lower hgb, but I just can’t. Between work and being a foster parent, I need my energy! I did experience lightheadedness when I pushed myself, which my schedule often requires. Once I get around 10, I start dragging, below 10, and life is miserable.

Aranesp has been a miricle drug for me. My hgb is up to 10.8. I forgot I could feel this good. My Nurse Practitioner told me that they base tx on symptoms. She said they have some folks they tx around 10, and others they wait until it gets lower.

Zoe

[franb rars dx 12/06 age 57]

Thanks for the info Zoe, how often do you have to get the Aranesp Injs?

Fran B

[patti]

Fran,

Generally, when you start feeling your heartbeat in your head or your ears feeling funny it’s a good time to get a blood tx. That usually is a good signal your a little too low. That frequently is the only sign my MIL has that she’s low and needs blood because she can function with a pretty low hgb.

patti

[josey]

I have just one dose of Aranesp left to get. I get the shots everyother week. I havn’t seen any results yet, my count still stays around 8.4. I want to hold off with tx until it gets under 8, I seem to function ok with it under 9. Of course I am tired most of the time, but I am retired and can rest when I have to. My doctor told me it may be awhile before the results show up. My biggest worry is my platelet count which stays around 10, I was started on Cyclosporine to see if that will bring it up, before I start on any MDS drugs. Good luck with the Aranesp, just make sure they inject it slowly otherwise it really hurts. Joanne

[Russ P.]

Aranesp seems to work for some people but be cautious. Your EPO should be checked 1st and if normal it may not help. That was my case and I suspect the Aranesp may have pushed me into AML.

[Author]

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