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

Wednesday Warrior!!!



Brenda & Cilla hangin' out at BU

 Today Cilla had her weekly "Velcade" (chemotherapy) and "Dex" (steroid) treatment and was accompanied by her friend, the lovely Brenda Stewart (thank you Brenda!!).

I was fortunate to join the two ladies for an extended lunch break and got to spend some "QT" in the BU Medical Center chemo treatment ward. We gossiped (exactly how many twins are there on Arrowhead Lane in Walpole??), talked business & current events (where is all the Haitian aid money? What's with all these blogger's making movies & millions and how can we do that???), and had tasty (if not messy) sandwiches from Blunch...Try the "Cilla" next time you are in there- cheddar cheese, artichokes, roasted red peppers & tomato panini with extra, extra napkins!

Medical recap based on our visit from "Dr. S.": 

• Cilla has recently been experiencing some pretty significant coughing and wheezing fits. Dr. S. said the wheezing/coughing and evidence of fluid increase over the last week or so is definitely related to being on the "Dex" now for 4 weeks. She reduced the Dex (steroid) down to an "8" for today (last week was 10, she used to be on a 20 back in May/June) to hopefully help with the wheezing & coughing.
• The "tingling" in Cilla's hands & feet is also a direct result of being on the Velcade for as long as she has, however, there is nothing she can do unless she lessens the Velcade which Cilla does NOT want to happen. Cilla made it clear to Dr. S. that she will take the dose "as is!" despite these annoying (and sleep depriving) side-effects.
• Dr. S said Cilla is STRONG and doesn't complain and that she "is doing very, very well"!
• Dr. S. said Mom could probably fly somewhere or "take a break" soon...but TBD
• Dr. S sends her support to all, especially to "Mr. Weatherbee" who had to work today...I think she might have a little crush...but who doesn't love Steve??? :-)

The schedule for October is as follows:

• Chemo will continue to be every Wednesday until October 20th (Oct. 6th, 13th & 20th). 
• Cilla will undergo a three-day evaluation in the BU Amyloid Research Center beginning on Oct. 25th...hopefully she'll get to spend some time with the "cute" clinical Dr. that Janet Robinson & Cilla liked so much. :-)
• On Friday October 29th, the "Amyloid Team" will do their weekly amyloid patient assessment meeting and determine the next path for Cilla. It could be more chemo, it could be a break, it could be a Stem Cell treatment...we are not sure yet so stay tuned!!!  

Love to all & thanks for reading!
-Sarah

Hello all,
As promised I'm posting a medical update on Cilla. As they might say say in the newsroom, today was a slow news day. We zipped in to the Boston Medical Center this morning courtesy of the hardly used HOV lane on the Southeast Expressway (Boston drivers are averse to ride sharing), then found a spot in the hospital front entrance Handicapped lot (not always the case), and got up to the waiting room around 10:20 for our 10:30 appointment. Then we had to wait for over an hour to get a bed and cubicle for Cilla. There's too many sick people these days! Next to Cilla's cubicle was an 82 year old man who appeared to be delerious, alternately singing "Take me out the the ballgame" and crying out for a sandwich. Today we didn't have a visit from our doctor and they just drew blood for Cilla's weekly lab tests. Everything seems to be about the same.
I'll let you know if anything "newsworthy" comes up. In the meantime, thank you all for your conitinued love and support.
Steve

A Beautiful Day!

HI, all.....Today was such a nice day!  Brooke and Casey Rex came by for lunch (and brought some for us!) and we all ate outside on the deck.  After they headed home, we decided to take our maiden voyage in the wheelchair lent to us by John and Shirley Lilly.  I have been fighting the idea of using/needing a wheelchair, but it was time to give it a whirl. 
So, Steve and I went to the Walpole Mall to go birthday present shopping for Charlotte at Barnes and Noble.  We had a tough time getting through the big double doors (try being a "disabled person" once in a while and you will see it is not that easy to get around!), but luckily some people came along and held the doors open for us.   The B&N salespeople had to move a few items around so I could get closer to the shelves to check out the stuff.  THEN, on the way out, I lost control and smacked into a display shelf of audio books.....everything came tumbling down, including the shelf.  So embarrassing! :)   Steve picked up all the merchandise, but we left the shelf for someone else to fix.  A store employee and a customer held the doors open for us for a speedy getaway........
After really resisting the idea of "succumbing" to a wheelchair, I have to admit that even with the problems we ran into, the wheelchair helped me stay a lot longer at the mall and enjoy the day.  So, hopefully I"ll only need it until the end of chemo and then be able to stay on my feet longer.
We ended the day at our usual haunt, the 204 Washington, and I'm ready for a new round of chemo tomorrow.
Thanks again to everyone for your prayers and support!  xxxxxxxx  Cilla