Originally Posted by
SillyLoocie
So, it's a very cold day IMHO. I had to turn up the heat this morning. Some in this house keeps on turning it down & it's not me. So once again it is treatment Tuesday for me. However,,,,,I found out last week that the drug company is withdrawing the study. I am on the last official prescribed dose of this medication. I am apparently the last person left at PMH on the study. It has been so brutal to tolerate this drug. Other people had complications & terrible side effects on this "stuff". So what this means for me at this point, I don't know. It has been keeping the tumours in my lungs from growing, so it has been "working" for me. I thought that things were just falling into place at the hospital with only having to go down there once a month. So, my doc was going to advocate for me & request that the drug be supplied to me on compassionate grounds & that's where I stand for now. I am hopeful they will be on board & agree to supply me with the drug, so I can continue on with the treatment. If not, I guess we'll have to try another approach to this dilemma. KPT-330 has had some really awful side effects. I have medication for the nausea that is OK. Sometimes it works, sometimes it's not all that effective. I have to take other drugs too. Sometimes I feel like a walking pharmacy. I'm still leading a relatively normal life, I just tire very easy. I have to keep on believing & keep the faith.
So I guess, I'll be emailing my nurse today to see where it stands.
Signed,
Loocie in Limbo