Any experience with Feraheme infusion? results?

[Soflajoe]

I'm into year 4 of W&W. Last year I learned that my Iron was a little low and DR. Suggested that I take Ferrous Glucinate tabs. At that Time my HGB was at 11.5. Although my count improved, ever so slightly, it began to drop again, slowly. Had an upper GI and colon inspection performed indicating no signs of bleeding. About a month ago, my present Hematologist suggested 2 sessions of Feraheme infusion to get my iron levels up and assured me that would do the trick. I had one session about two weeks ago and the 2nd one, just yesterday. When they did a blood draw yesterday, prior to the infusion, my HGB count did not show any sign of increasing. Actually went down from 10.8 two weeks ago to 10.7. Anyone know if this is normal ? (Two years ago, my level was at 13.2, and so there has been a steady decline)

[AussieNeil Administrator]

Soflajoe, a few of questions if I may.

1) What are your red blood cell counts doing?

2) What stage are you - do you know?

3) Have you ever had a bone marrow biopsy and if so, do you know what percentage of CLL infiltration you had when it was done?

4) Do you know if you have an enlarged spleen or whether it has become enlarged since your diagnosis 4 years ago?

5) How much experience has your hematologist had with CLL?

Your 'change' of HGB with the Feraheme infusion can pretty well be discounted, because the basic repeatability of a HGB test is at best +/- 0.1; I've even seen +/- 0.3 stated as the repeatability. So to me it appears that your HGB is not responding to the Feraheme infusion. (+/- 0.3 repeatability means that a sample of your blood could be tested a few times and come up with results of say between 10.5 and 11.1 and all those results be considered 'accurate' within the capabilities of the testing process. This is in part why trends rather than one off results are more important.)

Hopefully you'll see an increase in your HGB at your next test, but if you don't then your hematologist will need to look for reasons why it is not improving. That could be due to a progression in your CLL (spleen increasing, bone marrow infiltration increasing, some degree of auto-immune activity in which your CLL disturbed immune system is removing some of your red blood cells), or there could be some other cause. Whatever the cause, your hematologist should have the training to find out what the cause is. I certainly don't, but I've highlighed above what could be probable influencing factors from your CLL from what I've read.

My red blood cell count has dropped 15% since my diagnosis (stage IV) 6 years ago at which time my spleen was found to be swollen. My hemoglobin has only fallen 5% in that time. I suspect in my case that the drops are due to increasing bone marrow infiltration as my hematologist says my spleen size hasn't noticeably increased. My hemoglobin isn't as low as yours and you are getting down to that level where you'll notice the shortness of breath when your body needs more oxygen.

I hope your hematologist can help you restore your hemaglobin level fairly quickly.

Neil

[Soflajoe in reply to AussieNeil]

Neil..thank you for your response. I can tell you that my wbc count is at 30.6. RBC is 4.44. hGB is at 10.7 and LY# is at 24.3. Yes, my spleen is enlarged and the abdominal pain comes and goes usually after a heavy meal. You are right about the shortness of breath upon occasion .

Scheduled for a CT scan next week. I did have a bone marrow biopsy about 4 years ago. I'll have to review that, but it definitely is the involvement of B Cells. Fish test Aldo performed.. Once again. Thank you

[AussieNeil Administrator in reply to Soflajoe]

Your RBC is just on the low side, which is probably why your hematologist is trying to boost your hemoglobin with the Feraheme.

Do you know why you are undergoing a CT scan? Their usage in monitoring CLL is gradually becoming the exception. I've only had one (shortly after diagnosis) and that was unusual even 6 years ago and probably because I had more of an SLL (nodes, spleen involvement) than CLL presentation (peripheral blood).

Neil

[Soflajoe in reply to AussieNeil]

Numerous enlargements of nodes in the upper abdomen. have changed dramatically in size this past year as well as the spleen.. That, along with abdominal pain is prompting them to repeat the CT.

Three hematologists are in agreement. I don't much care for all these scans. Over the past 4 years I've had 4 scans. Two within 6 months of each other.

[AussieNeil Administrator in reply to Soflajoe]

Sorry to hear that Soflajoe. Well done on getting a second (and third) opinion to try and minimise your scan exposure. CT scans do have their place in monitoring our condition when other means aren't able to provide the full story.

Please keep us informed of how you go with the scan and hemoglobin boosting efforts.

Neil