[KMac]

Paul,

I echo the sentiments of slip-up-2 and riccd2001; that you should be very concerned, and that you should do everything humanly possible to get yourself to Fred Hutchinson ASAP. I understand they are literally among the best on earth for treating difficult blood diseases.

When my serum ferritin went over 3000 after ~20 units of blood (happened within 3 months, I was extremely transfusion dependent there for a while), my doctors at CBCI (Colorado Blood Cancer Institute) had appointments set up for me to get organ imaging almost immediately. Further, the hospital staff worked with my insurance company to get me started on an intense chelation regimen (desferal), and found a home health care service to deliver the treatment to my door and train me in self-administering it. They did all this for me within a couple of weeks, not within years.

That was two years ago. My ferritin is down below 1000 now, and I've been far from needing any transfusions, I have my life back. I look back and realize how very lucky I was to be treated at such an excellent place, and wonder if I wouldn't have responded as well, if not for the high caliber of CBCI and my entire treatment team.

You are clearly asking all the right questions, I am so glad you made your way to Marrowforums.

I hope I am wrong in saying this, but I'm left with the fear that your current oncology team may not be competent in treating your illness. If they haven't figured out the root cause of your anemia at this point after three years, I fear they will not be figuring it out now or in the future either. Further, it seems inexcusable to me that they have allowed your iron levels to get to this point, and even now are still not recommending imaging or chelation. Your doctor just sits there year after year pumping you full of blood and scratching his/her head, without the wisdom and humility to refer you to a more experienced hematologist/oncologist? That strikes me as unconscionable and insane.

My disclaimer; of course, I am a patient, not a doctor. Perhaps I speak harshly out of turn. But I'm a patient who is tired of hearing about other folks with blood diseases not getting the treatment they need and deserve, when there really are excellent doctors and hospitals out there that can help us.

I wish you the very best in your fight.