HI. After four weeks of no chemo, I'm feeling very strong and "normal". The white cell count is up, the Kappa Light Chains are down (which I am very grateful for since I thought a month of no chemo might cause a reverse trend). Steve and I spent the afternoon at Boston Medical Center last week and got clearance to resume the clinical trial and I started TODAY with a new round of pill chemotherapy, plus steroids. Turning in my vitals daily ("Dr. Steve" takes care of that with the blood pressure, temp and reporting weight). IF there are any big changes, Dr. Sanchorawala takes charge and orders more or less lasix or a visit to BMC. Otherwise, Steve manages things from here. I have lab tests done weekly at a lab right in Walpole. Again, if things go awry, then it's an "easy" drive into Boston to BMC.
This last month we took advantage of my feeling relatively good and did several dinners out with friends (always on the early side) and some fun family activities (puppet shows and bowling with Elizabeth and Charlotte) and some playtime, visits and lunch with Casey) and their parents! Sarah took the train out one night and we had a rousing game of Scrabble and dinner at the 204. Steve and I have seen more movies in the last month than in the last year.....we go to the afternoon matinee/senior discount at Patriot Place and have seen "True Grit", "The Fighter" "The King's Speech" and "The Town". So we're all set for the Oscars.....enough to make some educated decisions and enjoy The Red Carpet. As most of you know, since you are experiencing it, too....the weather has been atrocious. HUGE snow mounds everywhere. We are SO happy to be living in a condo where someone else does all the shoveling and plowing. Even an extra assessment will be worth it. We made a deal with a friend who drove to Florida last week to use her garage for the month of February, so the second car can stay dry and out of our driveway to let the plow guy do his work.
So....I got sidetracked. The fight against Amyloidosis is going well. I'm not quite so bummed about not qualifying for the stem cell transplant since the long process seems to be working, too. I have great HOPE that by spring we'll have more good Kappa Light Chain results and maybe can plan some vacations and whether I can go back to work at some point. Life is good!
Love, Cilla
xxxxxxxxx
Monday, January 31, 2011
Sunday, January 2, 2011
Holidays 2010
Hello, everyone.
We had a bit of a hectic Christmas week-end. All the grandchildren hd various ailments (pneumonia, Ear infections, stomach bug....) so we ended up with a split celebration with me wearing a mask and having to sit at least three feet away from anyone. Some healthy and recovering family members spent Christmas Day at Alan and Brooke's house. They put on a delicious buffet and a good time! The other members of the family came to our house on Sunday. So we got to see everyone, but not everyone saw each other.......So next week-end, we are going to try again for an all-family get together, as long as everyone is healthy and we don't have another blizzard!
The Monday after Christmas I got a call from Anthony, the nurse in charge of my Clinical trial at Boston Medical Center. He said my white cell count was extraordinarily low ( a common side effect of the treatment I am receiving). He told me to discontinue the remainder of the clinical trial drugs (Revlimid and Dexamethosone) until the count went up. Also the mask is now standard gear if I am around the grandkids or anyone, really.....Only air kisses and air hugs allowed. We'll check in tomorrow (Jan. 3) to see what the next move is.
Hope everyone had a fun New Year's weekend. I was NOT sorry to see 2010 in the rear view mirror. Looking forward to a healthy and happy 2011 for all! (Oh, and let's not forget the Patriots! Go Pats....all the way to Dallas!)
Steve sends greetings! And special thanks for all of our Christmas cards, treats and meals. We couldn't do this without such support.
Love, Cilla
We had a bit of a hectic Christmas week-end. All the grandchildren hd various ailments (pneumonia, Ear infections, stomach bug....) so we ended up with a split celebration with me wearing a mask and having to sit at least three feet away from anyone. Some healthy and recovering family members spent Christmas Day at Alan and Brooke's house. They put on a delicious buffet and a good time! The other members of the family came to our house on Sunday. So we got to see everyone, but not everyone saw each other.......So next week-end, we are going to try again for an all-family get together, as long as everyone is healthy and we don't have another blizzard!
The Monday after Christmas I got a call from Anthony, the nurse in charge of my Clinical trial at Boston Medical Center. He said my white cell count was extraordinarily low ( a common side effect of the treatment I am receiving). He told me to discontinue the remainder of the clinical trial drugs (Revlimid and Dexamethosone) until the count went up. Also the mask is now standard gear if I am around the grandkids or anyone, really.....Only air kisses and air hugs allowed. We'll check in tomorrow (Jan. 3) to see what the next move is.
Hope everyone had a fun New Year's weekend. I was NOT sorry to see 2010 in the rear view mirror. Looking forward to a healthy and happy 2011 for all! (Oh, and let's not forget the Patriots! Go Pats....all the way to Dallas!)
Steve sends greetings! And special thanks for all of our Christmas cards, treats and meals. We couldn't do this without such support.
Love, Cilla
Thursday, December 16, 2010
It's beginning to look a lot like Christmas......
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
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
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
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