Hello, everyone. It's time for an update........The last month has had it's ups and downs. The new chemo regimen has been OK. The steroids help keep my appetite up and have given me a bit more energy. On the other hand, the "Dex" creates a lot of extra fluid around my lungs and causes swelling. So, I'm back to having a cough and wheezing. But the doctors are monitoring me daily; Steve sends my "vitals" to them via email every morning. Drugs are adjusted daily. Steve keeps track of all the prescriptions (at least 19 per day! ) and has a detailed medication chart (created by our daughter in law Brooke) that we use.
We've got our Christmas tree and Dickens Village up and decorated, thanks to Alan, Matt and Sarah. I've ordered most of our Christmas gifts on-line. Janet Robinson took me to the Walpole Mall today for my final shopping trip. We used the wheelchair and it truly is a blessing. I always resist using it; Steve insists and he is always right! So, now I need to wrap, and maybe get some cards out. We'll see......
The French family (Weatherbees, etc.) Family Christmas party is this Saturday. We're up to about 50 people just in the "immediate" family...there has been a baby birth explosion over the last couple of years. We rent a hall so the kids can run wild. Santa comes, too. It's a gathering I've been looking forward to for weeks! I'm sure I'll come home and take a nap after....
At the end of this cycle in late December, the doctors will be taking a Kappa Light Chain blood test to see if there has been any change in the Amyloidosis. I hope so! Please say a prayer...
I"ll send an update in early 2011. In the meantime, I hope you all enjoy a Merry Christmas and a Happy New Year.
Cilla
xxxxx
Thursday, December 16, 2010
Tuesday, November 23, 2010
Two weeks in....
Hello, everyone! This is just an update on the first two weeks of the clinical trial. So far, so good! Supposedly, I'm going to "crash" with some fatigue, etc. over the next couple of weeks, but at this point I have a good energy level (not my normal "HIGH" energy, but better than the Velcade chemo from June through October. ). We've done a lot more social activities....Games Night, a trip to the Museum of Fine Arts new Art of the Americas Wing (A must see!!), some nice lunches and suppers at friend's houses and I even accompanied Steve to the Stop and Shop. Once!
We had a long but productive afternoon yesterday at the Amyloid Center at BU/BMC. Lab work, a chest x-ray (fluid is better), and a meeting with all of the "big guns"....Kathy Finn and Anthony Shelton, the clinical trials directors; Dr. Sanchorawala, my hemotolgist/Amyloid specialist; and another doctor from Europe (Spain, Italy??) who is followng Dr. S. around to learn about the latest Amyloid treatment. They are brilliant and caring people...I feel very lucky to be in such good hands. They are keeping a close watch on me..Steve emails my blood pressure, etc. to them daily and they all chime in via email with suggestions for medication, etc. We go back to BMC on Monday for another round.
Hope everyone has a great Thanksgiving! Our kids are spending the holiday with their in-laws and we are having dinner (and watching the Pats game) at our friend Pat Barylick's house right across the street. We get the family back at Christmas!
Our church continues to be a wonderful source of help and caring. People bring meals twice a week and we keep in touch with visits, emails, etc. We hope to get back to worship very soon...especially with the Advent season. Love it!!!
That's it for today! Love to read your comments. Thanks for "following" me.....Steve says HI, too!
Cilla
xxxxxxx
We had a long but productive afternoon yesterday at the Amyloid Center at BU/BMC. Lab work, a chest x-ray (fluid is better), and a meeting with all of the "big guns"....Kathy Finn and Anthony Shelton, the clinical trials directors; Dr. Sanchorawala, my hemotolgist/Amyloid specialist; and another doctor from Europe (Spain, Italy??) who is followng Dr. S. around to learn about the latest Amyloid treatment. They are brilliant and caring people...I feel very lucky to be in such good hands. They are keeping a close watch on me..Steve emails my blood pressure, etc. to them daily and they all chime in via email with suggestions for medication, etc. We go back to BMC on Monday for another round.
Hope everyone has a great Thanksgiving! Our kids are spending the holiday with their in-laws and we are having dinner (and watching the Pats game) at our friend Pat Barylick's house right across the street. We get the family back at Christmas!
Our church continues to be a wonderful source of help and caring. People bring meals twice a week and we keep in touch with visits, emails, etc. We hope to get back to worship very soon...especially with the Advent season. Love it!!!
That's it for today! Love to read your comments. Thanks for "following" me.....Steve says HI, too!
Cilla
xxxxxxx
Monday, November 8, 2010
New Trial is Underway
Hello, everyone......the last couple of weeks with no chemo has been a pleasant respite. We got to have some Halloween fun with The Cat in the Hat, a Princess and a Dinosaur....Melrose Halloween parade and Trick or Treating in West Roxbury. Alan made a special "cocktail" for the adult trick or treat companions called "The Nightmare". I did not have one...stuck to cider and candy.
We took three days last week and went to the Berkshires for our "getaway". It was a nice change of scene; the foliage was shades of gold as it faded into November. By Thursday when we left in the pouring rain, most of the leaves were gone. We stayed at our timeshare at Bentley Brook at Jiminy Peak ski area which is midpoint between Williamstown/North Adams and Lee/Stockbridge/Lenox. So we spent some time in Williamstown at one of our favorite museums, The Clark. The next day we spent in Stockbridge at the Norman Rockwell Museum, another favorite.
We arrived home in time to get gussied up for Sarah's 30th birthday party which was a fabulous event hosted by her husband Matt, who really knows how to throw a party. It was in the pentouse suite at the new Liberty Hotel ( formerly the Charles St. jail) which overlooks the Charles River. Can't believe our "baby" is 30. And even better that Carrie & Paul and Brooke and Alan were there, too.
So, we'll gloss over the rest of the week-end and the horrendous Pats/Browns game. My Patriots earrings, which have brought them good luck this year, will have to be replaced with a different pair for next week.
So, today, Monday, November 8 was the first day at Boston Medical Center and starting the new clinical trial. It seems like a long haul (and it is! Could be up to a year...), but I'm glad to get started. One day at a time! From my totally unscientific and non-medical background, it seems that the Melphalan and Revlimid (chemo drugs) are both attacking the bad plasma cells...one from the inside and one from the outside. Not sure what the steriod (Dexamethosone) is supposed to do, but I found during the last trial that it did help my energy level and appetite. Unfortunately, it also wreaks havoc with my fluid levels, especially around my lungs and heart, and legs, so the doctors need to keep a close on on the lab reports, weight gain, etc. I will also be more susceptible to blood clots and a lower immune system, so will need to skip the flying and will also need to be careful who is around me, especially this winter with flu, colds, etc. Air hugs for all!!!
I was so good at the doctors today that "Daddy Steve" got me a treat on the way home from the hospital....a vegetarian burrito from Chipotle!!!! mmmmm....I ate the whole thing! Don't know when I'll be able to eat one of those babies again! But I"ll have the memory........ :)
So, that's it from me tonight. As my friend Lisa told me, this is the "new step of my recovery" which I thought was a great way to look at it!
Thank you again for "following" this blog, keeping us in your prayers and thoughts, your cards, meals, visits and LOVE!
xxxxxxx
Cilla
We took three days last week and went to the Berkshires for our "getaway". It was a nice change of scene; the foliage was shades of gold as it faded into November. By Thursday when we left in the pouring rain, most of the leaves were gone. We stayed at our timeshare at Bentley Brook at Jiminy Peak ski area which is midpoint between Williamstown/North Adams and Lee/Stockbridge/Lenox. So we spent some time in Williamstown at one of our favorite museums, The Clark. The next day we spent in Stockbridge at the Norman Rockwell Museum, another favorite.
We arrived home in time to get gussied up for Sarah's 30th birthday party which was a fabulous event hosted by her husband Matt, who really knows how to throw a party. It was in the pentouse suite at the new Liberty Hotel ( formerly the Charles St. jail) which overlooks the Charles River. Can't believe our "baby" is 30. And even better that Carrie & Paul and Brooke and Alan were there, too.
So, we'll gloss over the rest of the week-end and the horrendous Pats/Browns game. My Patriots earrings, which have brought them good luck this year, will have to be replaced with a different pair for next week.
So, today, Monday, November 8 was the first day at Boston Medical Center and starting the new clinical trial. It seems like a long haul (and it is! Could be up to a year...), but I'm glad to get started. One day at a time! From my totally unscientific and non-medical background, it seems that the Melphalan and Revlimid (chemo drugs) are both attacking the bad plasma cells...one from the inside and one from the outside. Not sure what the steriod (Dexamethosone) is supposed to do, but I found during the last trial that it did help my energy level and appetite. Unfortunately, it also wreaks havoc with my fluid levels, especially around my lungs and heart, and legs, so the doctors need to keep a close on on the lab reports, weight gain, etc. I will also be more susceptible to blood clots and a lower immune system, so will need to skip the flying and will also need to be careful who is around me, especially this winter with flu, colds, etc. Air hugs for all!!!
I was so good at the doctors today that "Daddy Steve" got me a treat on the way home from the hospital....a vegetarian burrito from Chipotle!!!! mmmmm....I ate the whole thing! Don't know when I'll be able to eat one of those babies again! But I"ll have the memory........ :)
So, that's it from me tonight. As my friend Lisa told me, this is the "new step of my recovery" which I thought was a great way to look at it!
Thank you again for "following" this blog, keeping us in your prayers and thoughts, your cards, meals, visits and LOVE!
xxxxxxx
Cilla
Saturday, October 30, 2010
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
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
Wednesday, October 20, 2010
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
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
Thursday, October 14, 2010
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
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
Thursday, October 7, 2010
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
Love to all who keep in touch. I can feel your prayers and good thoughts!!!
Love, Cilla
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