[lescolb]

Thanks for your reply. I’ve been taking 200 mg of Thalomid for the past 16 months. What dosage is you Dad on? I can’t seem to transcend the tranquilizer effects of that dosage. I adapted pretty well to the 50 mg and the 100 mg dosages, but the 200 mg really has done me in – I’ve been at that level (200 mg) since mid Oct 2005.

Sorry to hear he has TB also. That may be complicating things too.

THanks for the info.
Lescolb

[lescolb]

Hi Sara – long delay I know – at present the diagnosis is MDS, RA. However, without a look at the marrow, they really cannot tell re: excess blasts, sideroblasts, chromosome abnormalities. I am going to Phila on Monday for another try. They will be sedating/anesthatizing me and I am not sure what the docs will try, there was some talk about a surgical biopsy. Guess they will discuss that on Monday prior to the procedure. Wish me luck!!

[lescolb]

SOrry for the delay in replying. I was away for while. http://www.medicalert.org is the website for the Medic Alert program. When you enroll, make sure to use the phone support in entering your health information. The web site is more geared to Heart, Diabetes, Dementia issues – and the phone support personnel are very conversant in our disease issues – unfazed by the concepts/issues of transfusion dependent, irradiated/leucocyte reduced blood products, etc. They will also help hyou decide what information is most important for the engraving on the bracelet/medallion. In addition to the
bracelet/medallion which gives brief information and your file number and the conctact number for the Medic Alert data base, they issue hard plastic cards that have more extensive information on them. They also have decals for your car so that EMT’s will know to look for further information in the vehicle. I also have hard plastic cards in my wallet and in the glove box of the car, and on my refrigerator.

Good luck

[lescolb]

Hi – Thanks for the note. All of my bone marrow aspirations have been “dry”. In my case, the Doc explained that the cells are so tightly packed in the marrow that they are like cement and they cannot aspirate anything – kind of like when you are having a venopuncture and the tech misses the vein
– the tissue there will not come out of the needle. It is frustrating , and rather counter-intuitive that a packed marrow (hypercellular) will not yield a specimen – you’d think that the cells would pop out without any suction on the syringe – but I guess this is not so.

I cannot make any claims about what is happening with your husband’s aspirate – keep asking additional questions until you get an explanation.
(at times I still scratch my head and wonder if the explanation I’ve been
given- and mostly accept – is not just double talk).

The docs do the best they can though. Was to the office yesterday – and we discussed sternal aspiration – and the possibility of an “Open hip biopsy”
with the orthopedic surgeon to make a much larger hole in the hip bone and actually dig out a specimen. Please remember that this has been going on for 6 1/2 years with me – and this solution may be rather drastic. Without the sample of cells from the marrow, they do not have any material on which to do the Chromosomal studies, look at the precursor cells _ and determine if there are any ringed sideroblasts, excess blasts or flakey platelet and white cell precursors. At present the only effect is severe anemia – although the platelets are very small, there are plenty of them.

Take care – hope this helps you understand more.

[lescolb]

I believe your best bet is the Medic Alert program. Minimal information is engraved on the bracelet/medallion but it refers back to Dr and extensive profile that you provide. It can be updated online and there are cards, car decals etc to carry to back up information. It took me some time to decide how to tackle this, but this seems the most flexible and efficient way. There is an enrolment fee and a yearly maintenance fee – nominal? $ 35 includes the basic bracelet, $ 20 annual renewal, unlimited updates on the data base. As condition changes, treatments change, you can add information rather than re-engraving bracelet.

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