Kairit and I spoke a few days ago. She had been to see her doctors at Tartu University Hospital. .) It seems one of her doctors is still not yet sure that Kairit has ALS. They want her to try what she calls a "chemistry" treatment called cyclophosphamide (cytoxan), a chemotherapy drug normally used for some types of cancer. It is also used in treating MMN or multifocal motor neuropathy.
treatment.
Kairit then sent me the following email...
"I think I'm not doing this. I'm sooo weak. I need my good blood and good bone marrow.
And I need to eat and never be sick and throw up. I really don't know- can I throw up or do I suffocate in the first 5 minutes? Experiments?
Doc say- the chemistry I need do in to the vein and that I need to do it again in 6 months.
But I have 2 months to thinking about this. Today and tomorrow I know- I'm not doing this. If I need to die, then without throwing up. :)))
In the meantime, I will continue to send her protein powders and vitamins and mineral supplements to keep her body as strong as possible. She feels well, but for the muscle weakness in her hands and legs.
I cannot advise her as to what to do. I understand the reluctance at trying such difficult treatment that can cause toxicity and so much harm to one's organs. Life is precious but if the treatment is not a cure but ravages your body while possibly giving you some more time…
What quality of life is there? What price? These are questions only the patient can answer. I wish my niece the gift of time lived as well as possible.
