ad 4. It is not sure if the data of six months of intake will be expressive enough. In case of a worsening oder stagnation of the condition of your father could this also be caused by desease progression or by finishing the EPO-support-medication, not so much by not-helping qualities of wheatgrass. There is also not existing a period of preceding transfusion therapy without epo and without wheatgrass - for comparison of the two periods. Hopefully, that you will realize some positive changes nevertheless.
This could be:
- A higher Haemoglobin-Level at Transfusion date
- again longer intervals between the transfusions
- Ferritin would not climb oder even decrease
- general better feeling
ad. 7. Ferritin Levels
7.1. Its not necessary to be astonished about a variation of the Ferritin-Levels in near future.. Ferritin is a marker, but does not exactly represent the transfusional iron burden in den body. A study has shown this fact and highlights the need of using also methods like - counting the number of transfusioned packs and the Liver Iron Load.
http://www.nature.com/nmiddleeast/20....2010.108.html
(you must log in for the full text,so i copied it into this posting, registering on nature.com is free)
doi:10.1038/nmiddleeast.2010.108; Published online 17 February 2010
Research highlight
Serum ferritin as a measure of iron overload
Helen Pilcher
Increasing numbers of patients with sickle-cell disease are receiving chronic blood transfusions to minimize disease-related complications. Left untreated, blood iron concentration can build up to toxic levels (iron overload), so patients commonly receive chelator drugs and have their iron levels closely monitored. Serum ferritin (SF) levels are widely used to monitor iron load; however, the reported relationship of SF to other iron-load measures varies among studies, raising questions about the validity of the biomarker.
To resolve this issue, an international research team, including one representative from Lebanon, compared SF against two other measures of iron load in 271 patients receiving chronic blood transfusions as part of two clinical trials for stroke prevention. SF levels were found to be nonlinear compared with the increasing iron load estimated from transfusion history and liver iron concentrations, and this disparity was most pronounced at intermediate SF levels (~1,500–2,500 ng/mL). SF levels were more reliable at the extremes, with low levels (<1,500 ng/mL) indicating a mostly acceptable iron load, and high levels (>3,000 ng/mL) indicating a significant iron load and an association with liver injury.
These results question the reliability of SF as an iron-load measure, particularly at intermediate levels, and highlight the need for other methods to monitor iron levels accurately in the blood.
References
1. Adamkiewicz, T. V. et al. Serum ferritin level changes in children with sickle cell disease on chronic blood transfusion are nonlinear and are associated with iron load and liver injury. Blood 114, 4632-4638 (2009). | Article | PubMed | OpenURL | | ChemPort |
7.2. A lot of MDS-Patients haven already an elevated ferritin-level when they start with the transfusions. Knowing such a fact from your father could be an additional information for you. Do you know his ferritin-level at diagnosis?
7.3. Your father ought not to have much more than 1.000 ng/ml Ferritin. A study on MDS and Chelation therapy suggests that iron overload has itself an adverse effect on survival (there are some studies in the same direction):
This is the study:
http://asheducationbook.hematologyli...ull/2009/1/664
Supportive care and chelation therapy in MDS: are we saving lives or just lowering iron? Heather A. Leitch1 and Linda M. Vickars1
ad 8. Which sort of liver functioning test did your father?
A few days before my transplantation - after having had 25 Packs of erythrozyte- concentrates during the chemos and after 16 days of Exjade, my ferritin was 1000 resp. 1250 (different laboratories, i took two analyses at the same time), but the magnetic resonance tomography told me, that my liver and my spleen had already signs of weakening concordant with the diagnosis of secondary hemosiderosis..
9. (not mentioned yet) Could you also, please, record the HB values at times of transfusion (or when taken elsewhere?)
Actually i have some infection. I usually take one sort of antibiotics as a general prevention therapy, as i am immunosuppressed. Now i needed temporarily a second one. The one my doctor prescribed caused an allergical reaction the day before yesterday. Today i have another pills, hope this will work without complications.
Wishing you and your family the very best!
Regards,
Margarete