Hello all, I share many of your responses. Oncology has not given me any real responses. Have not gone or asked about T-Cell since currently on Brukinsa. Moved to East coast waiting on new cance center to see what is or may be next.
Tiredness from October 2024 through May 2025 seems to have diminished. Some symtoms on and off, aches on certain joints come and go. Not sure what to expect just live each day and enjoy it as it comes. That brain fog Thank God has not been around fo some months. 😁

thanks Robert. As I said I wish we had a better roadmap at least letting us know what to expect by the preponderance of us. A 20 minute visit is not enough. Also, VERY sad that we'd have to choose between money and life. I just watched a show on Netflix called Critical: Between Life and Death based in London and tried to imagine what the costs were to save not only lives but limbs. I guess in capitalistic American government we now have a price. Shameful. Steve Jobs replaced several organs including his liver (what, there's a donor waiting list?) to fight pancreatic cancer which is pretty much lethal unless caught very, very early. He also delayed his treatment which was just plain old hubris. Trying to get myself and my child out of this country to "humane" socialistic country. Who Are We?

This is just one of many way to treat luekemia. I think the expense is $500,000 but the effect is postive with "controlling" the mutated cells. There is medication that may cost $15,000 per month to "control" the mutated cells. Be aware that the control may be lost and the mutated cells can possibly come back? You should look up this information and confirm the possible results?

Jo, the medication I take is like 15k a month in the US and only $150.00 in India for the same drug and doseage for a month. My insurance would pay all but 3k but who can afford that for the rest of their lives? It is pathetic what the drug companies charge us. Until they are given stiff limits, nothing will change. If one can't get help with the cost, what is going to happen? We are going to lose a lot of cancer patients and that is sad.

I think we decide how we want to many our life? The atch and wait is an experiment with a person's life to only respond when some unknown number is crossed. I had a doctor who increased my number each time my count surpassed the old number. I think decided to do something before I had organ damage from those bad WBC cells. We experiment it we do nothing or if we do something? I think the cost may be the biggest reason for medication because the "T" Theropy is very expensive and it seems to be effective until those bad cells mutate and control is lost.