[Russ]

Jeff, you will be in my prayers. May God bless and watch over you.

[Russ]

Kristy,
Continued prayers for you and your Mom.

[Russ]

Karen, check these posts where sweets is mentioned:
Sweets Syndrome–I crashed April 23, 2005
has anyone ever heard of immune system attacking transfusions September 19, 2006
IGIV has anyone ever heard of this September 14, 2006
Cellulitis September 05, 2006
Clofarabine August 22, 2006
Bumps under his skin and open sore August 18, 2006
Dacogen/Decitibine July 11, 2006
My visit with Dr. Kou. June 26, 2006 Prednisone treatment for RARS y-, 5- June 17, 2006
abbreviation protocol June 15, 2006
MDS and Thirtysomethings April 20, 2006
Where are Tah/donner and John ?? February 06, 2006
Nutritional Information November 04, 2005
Pineapple and Raw Black Sesame Seeds October 22, 2005
CMML Question October 09, 2005
Aspartame/Leukemia August 09, 2005
Hope you find some answers in the above.

[Russ]

Gloria, May the wonderful grace of God sustain and comfort you during this trying time. A prayer
goes out for you.

[Russ]

Speaking of boiled turtle shell and eye of newt, I understand Neulasta is made from the E-coli bacteria. (Ha) Regarding the iron overload, when I mentioned to my hemo/onc about not taking exjade figuring that the effects of iron would be a long way down the road, he agreed with me.
Patti, that ferritin over 3000 was pretty high and it may have been elevated long before that.
Prayers for all.

[Russ]

Thanks, Neil. That EPO was taken 17 days after the Aranesp on 9/6/05. That HGB increase to 11.7 was a long term (including 14 units PRBCs) and it did not stay up while continuing with Aranesp. It was up and down with no apparent correlation with the shots. All I can say is perhaps the HGB would have been worse without Aranesp. BTW, my last shot was cut back to 300mcg and there was much less nausea. Would you mind if I e-mailed you a Word doc showing CBCs and treatments?

[Russ]

Patti, Thank you for your input. It scares me a bit since like your MIL, I’ve been on Aranesp a long time and it doesn’t seem to help. That plus the fact my BM blasts went from 10% to 18% (Apr. to Aug.) My Hemo/Onc. has been great but he does seem to feel Aranesp is the way to go.
Prayers go out for you and your MIL.

[Russ]

Neil, My hemo/onc did not check my EPO or iron before starting however I just found an EPO test result for Sept 23, 2005. This was after a previous 500mcg of Aranesp on Sept. 6. The result was 34 mU/mL with a note the range is 4-27 mU/mL for 95% of individuals with normal hemocrit. (On that date my HCT was 33.1) Don’t know what this all means except perhaps the Aranesp is not working because of already high EPO. Any thoughts appreciated.

[Russ]

Kristy, Thanks for the update – wish the news could be better. Your mom and you will especially remembered in my prayers. God Bless.

[Russ]

Jen, Hang in there and go back over some of the old posts – there’s a lot of information and support. On your Dad’s CBC the WBC(white cell)
normal range is 4.00-11.00; HGB (Hemaglobin) is 13.0-17.3; RBC (red cells) 3.90-5.90; PLT (platelets) 130-470. Except for the low platelets your Dad’a numbers are pretty good.
Has he had a bone marrow biopsy (BMB)? – should have one to assess his condition. Prayers and best wishes.

[Russ]

Kristy & Sandy, Those were great answers for Leeman, I am encouraged by your comments. It becomes difficult to recall where your are now from your prior posts. Kristy, was your mom able to get back on decitabine and how’s she doing now? Sandy, what is the latest on your husband’s AML and treatment? Just saw the posts on MD Anderson where it mentioned Dr. Jeffery Moldrem’s vaccine and the remissions – how exciting, it would be nice to know an update on those trials. Prayers to all.

[Russ]

Neil, I’ve been on Aranesp since June 27, 2005. Averaging about 500mcg every 2 to 3 weeks, I asked doc to try 300mcg last Monday to reduce the nausea and it helped. My Hgb was 8.5 at start and was up to 10.5 in 4 weeks – part of that increase was 2 units of PBRCs. My hemo/onc did not check my EPO or iron before starting – can’t find if EPO has ever been checked but my ferritin is high over 1000. Thanks for your input.

[Russ]

I don’t seem to get the lift out of Aranesp that others have indicated. I keep a chart of my treatments and CBCs and haven’t noticed any HGB increase related to a shot of Aranesp. (It just makes me nauseus – mostly about the 3rd day after 500mcgs). PBRC txes are best for raising my HGB which has ranged from a low of 8.2 up to 11.7 – normally about 9 to 10. Comment appreciated.

[Russ]

Prayers for you and Jim,

[Russ]

Hi, Your husbands dx is different but I had asked my hem/onc about transfusions from family only and it seems it was a very complicated procedure in just the logistics of maintaining and delivering a specific blood supply. There have been horror stories in the past but the blood bank now is very safe – especially with irradiated PBRCs. With his HGB at 10.7, that is not too bad and your hemo/onc may prescribe procrit or aranesp. My guess and prayer is that he could avoid transfusions.

[Author]

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