[julia69]

Originally Posted by Marlene

Johh did High Dose Cytoxan at Johns Hopkins in April of 2002. So we are into his fifth year of recovery and it's been a long one. He was transfusion dependent for 20 months on platelets, and 22 months for red cells.

His counts are still low but we are seeing a very slow upward trend. There were times his count would not budge for 6 -8 months, then make a small improvement and hold there again. So John has not been one of those where once the counts start climbing, they do so fairly quickly.

As of February 16, 2007: WBC - 2.7, ANC - 1.8, HGB - 10.8, Platelets - 43.

These are an all time high for him. His platelets finally started to move last September. Til then, they hung out around 18- 20K.

We would love to see these get closer to normal range. But I am truly amazed at how well he does with low counts. He's only caught the flu one time in the past five years. And with counts lower than these, he broke his wrist in 2004, ruptured his quad tendon, and had surgery for it in Oct 2006. I could not believe how quickly he recovered.

Our approach is to try to do as much as possible to make sure we get proper nutrition, avoid as many of the bad things as practical and to ensure we have a partnership with our doc. There is nothing at this time can medicine can do for John that will help his bone marrow. So we're pretty much on our own and get supportive care when needed. I forgot...there is one thing we are doing. John is on Exjade for his iron overload. Too much iron can effect your BM so we are anticipating that as his Ferritin levels come down, we will see improvements.

I think your instincts on the cyclo should be explored. I saw you posted on the other site. You may want to start a new thread there about Gabriel and see what kind of response you get. Be sure to post his treatments, dates, latest counts, and cyclo levels and how much he takes a day. 400 pills sound like a lot.

Hand in there.....Marlene

His cyclo. level was 250 ,The doc liked it there.His crit. level was high so he's drinking more water, let's hope.Gabe takes many pills since diag.
Thank's for all your help.
Best Health for all,
Julia and Gabe