EPO

[celebrations]

Dear forum, especially those, who suffer from anemia, due to poor rbc counts:
– can you answer the question, how long the EPO worked with you?
– What side-effects do/did you have ?
– Is it true that when it stops working you are going to tx right away?
– Would you consider it probable that the danger of turning to AML is higher, than without using it?
– Did it do sth. to your wbcs and plts. either ?

Can we share experiences ?

Bye, Bergit

[Neil]

Hi Bergit,
I started on Procrit a little over 4 years ago and after 32 months switched to Aranesp.
My response to Procrit was almost immediate. HGB went to the 11.5 range. Energy level really increased!
No side effects with either Procrit or Aranesp.
My HGB with Aranesp is in the 11.0 to 11.5 range.
My WBC and platelets are getting a boost also. they go up a bit for a few days just after an injection. My doc indicated this is a fairly rare situation that he sees occasionally. Apparently there is a positive side effect where the marrow is stimulated to produce a few more WBCs and platelets. By the time I go in for my next injection they are both back at my “normal” range (1.0 – 1.5 and 10,000).
Both my hemo and internist watch my blood pressure and lipids. Both are in good shape.
Was on a 2 week interval with Procrit and am 3 weeks with Aranesp.
Pretty sure my doc made the switch because he gets a larger rebate from the Aranesp manufacturer.
The extra week between injections is also more convenient.
The only other difference is I now have a craving for sunflower seeds.
Cannot comment on tx since my counts have been holding.
One factor that may help is your iron level. Both need iron to function properly. Have your doc check your iron stores. If low a supplement might help.
Transforming to AML is tough to assess, If you are classified with RA, RARS or RCMD and are low to intermediate risk the chances are a patient will not go to AML. RAEB patients and those that are high risk have more of a possibility.

[Zoe]

I have been on Aranesp since February of this year. My hgb is now in the 11 range also. It actually went up to 11.9 3 injections ago (I get them every 2 weeks). I was so hopeful it would hit that magic 12.0, but alas it has droped back to 11.6. However, I am very happy in the 11 range. I feel great and I am even getting a bit of a tan this year.

I have had no side effects. My whites and platelets remain the same. My whites are normal, and my platelets run a bit high.

Zoe

[celebrations]

Neil and Zoe,
thanx for these encouraging news.
I get a shot every week, what is your dosis, mine is 1ml or 40 000 units per week, any idea how much you get?
Have a nice day, Bergit

[Neil]

Hi Bergit,
Am getting 300mcg every 3 weeks.

Zoe,
Best to keep your HGB 12.0 or under to conform with manufacturer recommendations. There were some problems with patients who got higher doses and were some where over 12.0 Wa never able to find out how high they were. They had clotting and heart issues and some reference to kidney/liver problems.
These were mainly patients who had previously had chemo and were then “overdosed” with EPO.
No specific referenc to MDS patients who were following manufacturer recommendations.

[Zoe]

Neil, Thanks for the warning about the 12.0 limit. That is what I meant actually, I was hoping to skip an injection

Bergit, I am currently on 300 mcg of Aranesp every 2 weeks.

Zoe

[Author]

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