Hello, everyone!
Last week was very busy at the BU Amyloid Center. I had three days of examinations, tests, and discussions. The final word is that the Velcade chemo treatments I've been doing for the last five months have put a big dent in the amyloid but haven't knocked it out. So without further treatment, the disease will get worse.
The doctors had a meeting on Friday to discuss my exam and lab results and have decided that I am eligible for another clinical trial. If anyone wants to look it up, it's H26320-Phase II Trial of MRD (Melphalan, Revlimid and Dexamethasone). The trial will require a monthly trip to BMC, plus weekly lab tests. It runs on a 28 day cycle and the chemo is in pill form. If I agree to be in the study, (which I do!), it is a year's duration. There are tons of probable side effects, but I should have a week or so each month when I feel pretty good and a couple of weeks of general fatigue and tiredness. The Melphalan, in particular, is a very strong drug, but I will be recieving low doses over a long period of time instead of a high dose "whack upside the head". This trial is like a marathon rather than a sprint.
I"m starting on November 8, so I"ll be able to have a good time at Sarah's 30th birthday party on the 5th. We had hoped to take some kind of a vacation this week, but flying is still problematical. Not to disparage the month of November, but there's no place really exciting we feel like driving to.....we may just do a "staycation" and do some movies, plays and museums right in the Boston area and eat out a lot! :) Will report later on our decision.....
OK....gotta run. We did our annual winter/summer clothes swap and I found out that everything is just too darm BIG!!!! So, we're going to do a little clothes shopping this afternoon. :)
Kisses and hugs to all! and "Go, Pats" against the Vikings tomorrow. I hope it's a Treat and not a Trick.
Cilla xxxxxxxxx
Cilla, your the greatest optimist and that is a HUGE component needed when fighting anything. Our prayers are with you and wish you the best. It was great seeing you a few weeks ago--keep me updated on your progress. Judy
ReplyDeleteHi Cill,
ReplyDeleteGlad to hear that a big dent has been made in the amyloid! Yes go shopping and treat yourself you sexy thing you...lol! I hope you enjoy your "stay vacation", lots to do in our areas. Thinking of you always, prayers and well wishes from everyone!
xoxoxo
Nancy
I agree with Judy, you have such a great attitude.
ReplyDeleteWishing and praying every day for you as you fight off this terrible disease. Hope to see you both again soon..
Have fun going clothes shopping today!!!!
Love to you, Maria :)
Yay. You are going to beat this. You looked great at Meg's shower. So glad you came.
ReplyDeleteLove, Jackie and Steve
Thanks for the update, was thinking of you all day Friday. Slow and steady wins the race , this is beatable it's just finding the right combo of therapy, thank goodness we have such great hospitals in Boston. Hey how about a movie next week, if Steve can spare you.
ReplyDeleteI've been thinking of you. Glad to hear you were accepted into this trial. I will pray that this does the trick and you are treated to a healthy bill of health at the end of the trial. Your strength, humor and optimism are amazing. Love ya, Lisa
ReplyDeleteCilla just want you to know I am pulling for you all the way. sorry I missed the luncheon as I was out of town but I want you to know I have benn praying for you since the beginning and checking on you thru Mary Noll. I know this is one fight you will win..sharyn K
ReplyDeleteCilla,
ReplyDeleteJohn and I will continue to pray for complete healing from your MRD Trial. All the hope and prayers so far have helped make the big dent! Keep smiling and know that we're all rooting for you and we all love you.
Love, Laura ... and John
Good luck tomorrow Cilla! You are doing an amazing job being so strong and fighting this! We will all continue to pray for you. XOXOX
ReplyDeleteCilla, I am so happy you are in this trial!!!! Thank God you have already made a dent, with the grace of God, and all your hard work. It sounds like it will be like a marathon, so stay strong mentally as you have been,and let God, family and friends keep uplifting you with prayer and love. I know you are going to be well again. Your doing it!!!! Love, Your Sister Mary
ReplyDelete