Marrowforums - Glenda H journey

Hi Glenda im originally from Gladstone:),now living in Bundaberg and having real problems finding a GP here who has at least seen this disease ..I was diagnosed low grade, the specialist didn't give me numbers etc etc just told me the plain hard cold facts(all the worst bits!!) and left me wondering and some what stunned..I have done tons of research on the net and i find this site amazing..so far my platelets and white cell count remain ok no blasts etc, and red cells that go screwy all the time.im wondering if you have heard of any one using a portable oxygen concentrator for those times when the red cell count goes ballistic.... or whether it helps or not!!I am really interested to find if your counts go up good luck with it all .go for it,any thing is worth trying. best wishes danielle

Quote:

Originally Posted by Glenda H (Post 27057)

Hello all :)

This is my first post on this forum. This is My Story and how it all began.
I live near Rockhampton in Central Queensland.

In Oct 2008 my mother-in-law said "Why don't you go and get your cholesterol checked." She had high cholesterol so I went for a blood test (probably the first one I've ever had) just out of curiosity. Anyway my GP called me back to say that my platelets were lower than normal. The test was 105 (range 150 - 400) and then I started having tests every 3 months and was considered having ITP. I also had an abdomen ultrasound which showed only mild problems. Later my GP referred me to a Physician who did a Bone Marrow Biopsy which said mild dysplasia. Anyway over the course of the next year or so the platelets went from 125 down to 84. During this time I went to a Naturopath but stopped going as didn't like his bedside manner.
At beginning of last year my GP noted that my haemogloblin count was starting to go down so after a couple months once again went to see the Physician. Anyway he then referred me to a Haemotologist who comes here. However he was on holidays so I had an appointment with another one down in Brisbane. He arranged for me to be fitted in to see the Haematologist who comes up here as well as other blood tests and another bone marrow biopsy. In the meantime I started going to another Naturopath here and found him much easier to talk to.

I had the bone marrow biopsy on 4th Oct and then had my first blood transfusion on 29th Oct. I also had another abdomen ultrasound, chest xray and echocardiogram all fairly okay. My haemogloblin had gone down to 57 (range 115 - 165) so I had not much energy and feeling rather fatigued. Since then I've had another 2 transfusions end of November and December. My last blood test count had gone down to 72 so probably will have another transfusion in the next day or so. The BMP showed monosomy 7 in 33% of cells and 2:20 translocation. Summary was Refractory cytopenia with multilineage dysplasia. IPS (Intermediate 2 risk group).

I have weekly blood tests (FBC and Routine Chemistry) and after visit with Haematologist (every 4 to 5 weeks ) he requests Iron Studies. He has spoken to me about having Vidaza injections which would mean having to be down in Brisbane for 10 days every month for 6 months.
At this stage I am trying some alternative treatments as well as Blood Type Diet (B+). The main one being treatment with a machine called Physiospect which looks at all areas of the body right down to DNA fragments and can treat those areas using Meta-Therapy. For this treatment I have to fly down to the Gold Coast and stay overnight. I usually do this every 3 to 4 weeks. This Naturopath also has me on Product B which was developed in USA (Telemore Support and Antioxidant). Since I started the transfusions I set up Charts for Haemogloblin, White Cell Count, Platelets and Neutrophils.

Regards

Glenda H