Back to my story about yesterday. I started off by signing all the paperwork necessary to get started on the trial. Then I took the UCSF shuttle across town to have a cardiac MRI. It took them a couple tries to find a vein, but they got it in there. Thankfully I'm not claustrophobic, so the MRI doesn't stress me out, in fact it was quite relaxing. I almost fell asleep! After the MRI I took the shuttle back across town, had blood drawn and had my port flushed (has to be done every 4-6 weeks). Last but not least I had an EKG. Assuming I pass all these tests (and everyone is pretty sure that I will), I will head back in to the city next Thursday for more tests.
Next Thursday will be a full day! I'm scheduled for a CT Scan at 8:45, Mammogram & Ultrasound at 9:30, blood draw at 11:20, meeting with the doctor to discuss intricacies of the trial protocol at 1:00, fine-needle aspiration (biopsy) at 1:45 and injection training at 3pm. After all that I'll be ready to start taking the drug (Lapatinib) on Saturday. The basic protocol is that for 5 days, I'll take the lapatinib twice a day, and take lots of drugs to stay ahead of the GI disturbances. Then, I'll be off Lapatinib for 9 days, and the cycle starts again.
I'm anxious to get started, but I'm sure as it gets closer I'll get more nervous.
Keith's mom is still in the hospital. Things are going along "ok" but measurable progress is still a little hard to come by. She's hanging in there as they try to dial in the drugs and wait for some response. The family has been pulling together, taking shifts to be there with her and keep a handle on all the meds and treatments.
Thanks for the report! You've been on my mind, wondering how things went at UCSF on Wed. Having your personal concierge is wonderful, and probably beneficial to UCSF, too, as this is such complicated and high-level care that you're getting. Since you're getting injection training, I guess that means you give yourself shots of Lapatinib? Hope that Lapatinib just gobbles up your cancer and that it doesn't take long to get good at giving yourself shots!
ReplyDeleteI'm so sorry to hear that Keith's mom is still in the hospital and slow to respond to the drugs. Is he still in Duluth? What a rough patch you two are going through - I'm sure you need his support and company, and at the same time want him to be with his mom. Thinking of you and wishing I could do something helpful, love, Sheila
Thanks so much for the update, Eileen. Wow, you are really getting a thorough baseline checkup. I'm glad that you were able to join the trial and get started quickly. You must be exhausted though.... hope both you and Keith can take some time out to relax. I think of you so often and hope that both you and Keith's mom get some good news very soon.
ReplyDeleteLove, ann
Thanks very much for the detailed report, Eileen. I have been thinking of you, as well.
ReplyDeleteA concierge… cool! But seriously, it is very useful and needed. You have enough on your mind. And, it’s nice to have a particular point person to ask questions, etc.
Wow, you have been through a lot already. But, as Ann said, it’s great that you are going through a thorough check-up before starting the trial.
I hope that it’s easy to get the hang of administering your own meds. Do you practice on oranges? Any special soups for this round?
Well, I hope that the Lapatinib is just the ticket and you see excellent results soon.
I am so sorry to hear that the news on Keith’s mom is not better. That is so stressful on all concerned, to say the very least.
Take good care.
Love, Jane
Congrats for getting through phase one! This is quite an operation at UCSF; thank goodness it offers good support. That's the way all of our health care should be; you deserve all the good service you can get. I'll be thinking of you next Thursday - that will be quite some day. I hope that Keith can come pick you up - you'll be exhausted.
ReplyDeleteI hope Keith's mom turns a corner soon and has some good progress. I'll say a few extra prayers for all of you. lots of love,
Ellen