Stem Cell Transplant?
Hi,
following the decision to consider a transplant I’m now well underway with the testing process to make sure It’s the right thing to do. On the 18th JanuaryI went down to Birmingham for a follow up appointment with Dr Cook. We had a good chat and basically said that he wanted to check out the heart in more detail but was still recommending the transplant. He is setting up a meeting with the Cardiologist at Birmingham and then if the test results are positive then a final meeting on Feb 15th for consent to move forward.
In summary:
1. Stem Cell Transplantation is still a real possiblity but need to carryout more tests to maximise safety
a) Meet the Cardiologist (Dr Townsend) at Birmingham and let him coordinate some more detailed heart tests in two weeks.
b) Have a further bone marrow biopsy to check that the level of plasma cells have not increased since April 2008. If they have increased then a short course of chemo may be required before a transplant.
2. A provisional date for the operation/procedure is March 1st 2010
3. The procedure will involve a 3 week hospitalisation and then an estimated 2 month recovery period
4. Pre-procedure tests on heart, lungs and kidneys : UPDATE following a MUGA scan my LVEF was 75% which is above normal - really pleased with this. This test basically measures the proportion of blood that is expelled from the ventricle with each heart beat and is a good overall cardiac function measure. A further blood test will confirm another heart performance marker. Still waiting for my eGFR for my Kidney’s (previously 83 = stage 2 just under normal (90)). This test estimates the volume of blood filtered by your kidneys over a given period of time. The test involves a blood test which measures your levels of creatinine. Creatinine is normally cleared from the blood by the kidneys. If your kidneys are not working properly then this marker goes up.
5. Hickman line put into heart vein to allow transfusions and anti-biotics delivery during procedure and post period etc
Due to my cardiac involvement they want to make absolutely sure my heart is strong and within the tolerances as normally amyloid patients with heart involvement are not offered the chance of stem cell transplantation.
The benefits of this procedure are a much longer treatment free period and in some patients the condition does not re-occur as opposed to a course of chemo with a possible 12 month break from drugs.
The key information is that they think this window of opportunity for this procedure will disappear if not taken now as it is more likely that my overall amyloid deposits around the heart and kidneys may, over time, get worse and then no chance of transplant.
ps Lambda SFLC’s still around 90 to 100 meaning I need to act sooner rather than later otherwise more deposits in my blood and organs.
let you know how I go,
Phil
Filed under: Latest News on January 27th, 2010
I am really pleased to hear that you are making such progress. Having lost my partner at the age of 46 on the 2nd January, and after only knowing about Amyloidosis for 5 weeks, its heartening to see that there is light at the end of the tunnel> I wish you well with your treatment and will continue to follow your progress
Regards
Fiona