6 replies to this topic

[jmoorhou]

Does anyone know, I'm going in this direction after three months on Gleevec...I am getting B12 shots....thanks

[cleocans]

I am on Sprycel but my onc let it get down to 9.  If it went any lower I was going to have a blood transfusion.  It started to go back up and I never had to have one.

[HeatherZ]

I am anemic and my hemoglobin has often dipped below that.  My old Onc used to give me IV iron when I got below 10.  My new Onc (old one retired) said he does not believe in the IV iron and I should just eat some high iron foods to build back up.  Right now I am sitting with my hemoglobin at 8 and dropping.  He said once it hits 6, insurance will pay for a transfusion.  I must say, even at 8 I am pretty miserable.

[Melanie]

The point that my Onc ordered blood transfusions was anything below 8.5. Labs differentiate in what number range are considered normal for their lab. Normal range for may lab is 12.0 - 16.0.  I've had several transfusions and the relief is very noticeable. My HBG is steady now at around 10.0 - 11.0 and am able to do most everything I want as long as I pace myself.  Walking everyday has helped. 

It's not uncommon for your numbers to drop at the beginning of TKI treatment.  Typically, they go back to the normal range as your body adjust to the meds and the leukemic cells die off and are replaced with new ones.

HeatherZ -  [He said once it hits 6, insurance will pay for a transfusion.]  That seems pretty low before insurance will pay. May want to check with your insurance and see what they are basing that off of.  May be the diagnosis of anemic vs CML. You would think that the combination would allow for a transfusion whenever the Dr thought it was needed, instead of the insurance company dictating your treatment.  Just think it's worth a check.

Best to all!

[HeatherZ]

12 - 16 is the normal range for my lab too.  I think the new Onc is just annoyed because I am still having periods.  The reason I am so low right now is I have been bleeding for over a month straight.  I am under the care of the GYN but everything she is doing is not working.  I just had  a biopsy to look for cancer and once those results are in we will come up with a plan on what to do next.  When I had the CBC done by the GYN after a particularly bad weekend of bleeding, I was at 9.  I caled the Onc to request Iron because that is what the last Onc would do for me.  This guy wanted to see me and when I left the appt I was honestly pissed off.  As I thought about it, I did agree with what he was saying but it is still a hadr pill to swallow when you feel so bad.  Since then, the bleeding has slowed and at last check (before my surgery) I was at 8.  My surgery was last Wed and I have continued to bleed almost constantly since then so I really wonder what it is down to by now.  I feel so bad it isn't even funny.  I get periods where my heartbeat is irregular for no apparent reason.  I cannot seem to regulate my body temperature so even though it is in the 70's, I was sitting at my daughters softball game wrapped in a blanket.  My head is pounding constantly.  I guess at this point I am almost afraid to call the Onc just to hear there is nothing he will do until I stop bleeding.  Mentally this is really wearing me out. 

[jmoorhou]

  Is there any way you can go to a Naturopath, who could probably give you an Iron IV, they also give B 12 and B complex shots usually at about $20 shot, they can also train you to give yourself your own shot, you buy in bulk and save money that way.

[HeatherZ]

I'll look into that.