The Next Phase....New Clinical Trial

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

The end of the "cycle"

HI, everyone.....

Today was the end of a five month chemo cycle to see if Velcade (the chemotherapy drug) and Dexamethosone (the steroid) would "cure" or put me into remission for Amyloid.  Unfortunately, the latest "Kappa Light Chain" blood test didn't show any change from the last time or for basically the last six or eight weeks.  So, the good side is that it's "stable"; bad side is the doctors need to come up with another idea or two for treatment.

Next week I will be going to Boston Medical Center for three days in a row (M-T-W) for a reavaluation.  The tests will be basically what they did during my first three day visit last May:  Bone Marrow Biopsy, a flood of urine tests, pulmonary tests to see what my lung capacity is, echocardiagram, and probably others I can't remember now.  The doctors will then gather all this info and meet together on Friday afternoon.  I will hope to get the results sometime on Friday; if not, it will be Monday.

So, if they decide to give me "a break", then Steve and I will try to plan a last minute vacation someplace....it will depend on whether I am allowed to travel by air or by land.  Any ideas, anyone???  Someplace warm would be my first choice. That would be tough if I have flying restrictions.  :)

Yesterday was a really wonderful day.  I was invited to lunch by a couple of people from my RE/Max office and it turned out to be about 25 brokers from three different offices!!  They all came to say how much they missed me and to wish me well.  It was overwhelming....... my "pals".  I do miss them. I work with the best Realtors in the area and the fact that they would take two hours out of very busy days to come and say HI really meant a lot to me.   I got home about 2 and went to  bed and slept until 6!!!  Steve and I then caught up with the final episode of "Mad Men" which I could talk and talk about, but I won't.  If anyone wants to dish with me about what the heck Don Draper is possibly thinking, send me an email........And we dislike Betty even more! :)

OK, when I know my next treatment options, you will be the first to know.  Keep the prayers and good thoughts coming.  I will need them for sure.

xxxxxxxxxxx

Cilla

More Information

HI...Yesterday was another "lost week-end" at the Boston Medical Center, but we did leave with some good information.  We had an early apppointment which meant we found a perfect parking space right away, didn't have to wait long in the reception area and got one of the nice rooms in the stem cell area.  Blood work done in a timely manner, Steve went to Dunky's and brought back a breakfast sandwich and tea for me.....which was fortuitous since the hospital food we were offered later was gross. Steve splurged and had TWO donuts and coffee.  Anyway, the rest of the morning went smoothly and we were DONE by about 11:30......except that an appointment had been made for us to see Dr. Berks the pulmonologist (lung guy) at 2:30.  So we hung out and waited. I remarked that he'd probably want me to get an x-ray, and sure enough, after he arrived at 3:30 and spent about an hour with us....he really is a good guy.....we were then sent off for a chest x-ray.  The results showed that there is more fluid on my lungs than the doctors had realized...which accounts for the horrendous cough, wheezing and shortness of breath I've experienced over the last six weeks or so.  So, extra lasix for me and I"ll be seeing Dr. Berks again soon! :)  When we finally got out of there around 5, we despaired about the traffic on the Expressway.  However, we used the HOV lane down to the split and just narrowly avoided an accident scene and were home in less than 40 minutes....a world record, I believe!
So.....one more treatment in this cycle, then the 3 day evaluation  (including a bone marrow biopsy) and then "We'll see", as my father used to say! 
I have lots to look forward to over the next few weeks.....Pats game on Sunday, Halloween with the grandchildren, and by early November (Sarah's 30th birthday) I hope to have good news and a plan of action.
Thanks again, everyone, for your continued thoughts, prayers, delicious suppers and snacks, cards, etc. Last Sunday afternoon we drove up to Rockport and Gloucester for an Artisans Tour.  We saw some great pottery, paintings and incredible North Shore ocean views. Good for the soul. The Labyrinth Walk at church last Sunday night was a wonderful treat for the soul,too.  Looking forward to the healing services starting next Monday, the 18th.  Come on down!   All these experiences I savor in my heart every day as I continue my R&R at home and wait for life to get back to "normal"!
Love, Cilla  xxxxxxxx

Uneventful Wednesday

HI...Nothing exciting to report.  Regular chemo treatment with a long wait in the waiting room beforehand.  Luckily, by waiting, we got a nice quiet single room in the stem cell transplant area...bliss!  Next week we have an earlier appointment, so hopefully that will take care of the long waiting times.  So, two more treatments to go, then the evaluation.  I am a little nervous and bummed that after five months, even though the "numbers" are down, there's no remission.  I know the doctors will come up with a plan.....stay tuned!
Love to all who keep in touch.  I can feel your prayers and good thoughts!!!
 Love, Cilla