Living with Brain Cancer

I posted our story about my husband and I want to share the rest of the story with other people who are coping and fighting this disease. We had arrived at an impasse with treatment that consisted of irinotecan and avastin and had to quit for while. We waited while my husbands platelets kept going down down down. HIs other blood counts were down as well.

Finally we had to head back to the hospital as he was covered in pitechia [?) blood spots] and was getting weaker and more confused and belligerant. His platelet count was down to 18 and finally went down to 11 so we started on blood transfusions, platelet transfusions and then more transfusions and more transfusions and we were not getting the results we wanted.

Finally his oncologist ordered a bone marrow test and it was discovered that his bone marrow was not producing. This was a new and isolated reaction to the irinotecan/avastin treatment from all we could ascertain. There was no protocols for this reaction so we had to go to try everything and we did.

We finally used a treatment that is used for ITP and got his platelets to kind of stop dropping but they were very erratic and did not go up to where they needed to be. We brought him home and for the first 6-7 weeks he improved and seemed to gain some strength but then the downhill started.

He only stayed with us for another 6 weeks before he gave up the fight. Our family is coping with our loss but are grateful for the extra 3 months we had with our Husband and Dad. There seems to be treatments that are newer and the question you have to ask yourself is whether you are willing to risk everything for more time or maybe a breakthrough. This does not make you an experiment - it makes you a very courageous person. My daughter is fighting a totally different kind of cancer and they gave each other courage. Needless to say I admired my husbands courage and my daughter is something else!!

Do something for cancer research while you work through all the problems associated with these terrible cancers and it will help you cope with all the turmoil.