We did our annual intensive evaluation at the BU Amyloidosis Research and Clinic this week and I can report things are going well. As the doctors keep telling us, the most important factor is how Chris is feeling overall, from her own perspective. When asked by all of the various doctors in each of the exams, she always responded with a strong "I'm feeling good!". To me, she looks great, she continues to have lots of energy, she has a positive disposition, and things are going well in her life.
Of course we watch her "numbers" maniacally, and I'll give the basics here as I do not yet have the final report. The most important, her FLC (free light chain) was 45. This continues to inch up ever so slowly in my mind, but they always say the increase in 'insignificant". I look at the overall trend and I do see the random jumping of the number in a + or - 6 point range (39 -45) but that is off a baseline of 600+ back 4 years ago, so overall pretty stable. Chris' other biomarkers also remained equivalent. We watch the 24 hour proteinuria, the BNP, the left ventricle ejection fraction, and the overall heart wall thickness. In general, all seem to be stable although jumping around each evaluation. We will get the famous "call" on Friday, but I've become enough of an expert that I know exactly what they will say: "things look good, don't worry about the slight rise, you look and feel great, so lets do another blood and urine test in 3-4 months". So bottom line is that Chris continues to have a "Very Good Partial Response". My nature, as stated many times in previous blog posts is to keep going until we get a "very good complete response", but they keep telling us there is no need yet. So we live our lives as fully as we can, even thought we know the amyloidosis will come back at some point.
As a quick update as to Chris' ability to live a good life, 4 years after her stem cell transplant, she continues to walk 2-3 miles in the woods most days, goes to a personal trainer 3 days a week, and yoga two times per week. She gardens, helps many of the senior citizens in her life, and travels. This spring Chris and I went to Dubai and India for 2 weeks and she did great. These were long days of trekking through cities like Mumbai and Muscat, but she never tired or felt any nausea or limitations. We even went skiing at an indoor ski slope inside the worlds largest mall in Dubai. She watched our daughter Abby graduate from college in May, will help her move to an apartment in Philly this summer, and will get away most summer weekends to Maine or NH. Finally, we have plans to go to Oktoberfest in Munich followed by a week in Tuscany this fall with our good friends and another trip back to London to see the Patriots play at Wembley. I mention these trips only to let amyloidosis patients understand a few points: 1) it is possible to keep a very active life post diagnosis and post treatment and 2) our belief that we need to do the things we want to do when we can. We never take Chris' health for granted and we never want to regret not taking advantage of her current strength to do the things we want to do. Effectively we have a "carpe diem" approach and I would encourage that attitude amongst all amyloidosis patients.
The other important element of the week at BU is the "support group" meeting on Tuesday. Here, all of the weeks visitors to the center get together and share their stories. I am always fascinated by the stories: how were people diagnosed, what were their symptoms, where are they in the process, what is their disposition, etc. This session included two first time visitors with the deer in the headlights look, a survivor of six years and another survivor of 15 years. Very inspiring stories. I think how scared Chris and I were at our first support group session and the fear we had after reading the stats of average life expectancy. I know the first time visitors have that exact same fear, but I am hopeful that the stories they hear give them hope. Additionally, I think everyone learns the critical importance of a full time caregiver. Those of us who were caregivers shared some of our stories about lifting our patients out of bed, getting them dressed, fed, cleaning up all kinds of messes, etc. Nobody can fight this alone and the caregiver/advocate role is the unheralded, often frustrating, and always rewarding responsibility of someone who has to swallow their ego and their own fears and be the rock of support for the patent.
I continue to watch every clinical trial and every published paper as I have set up Google alerts on key words which I get daily. The trials continue to make progress and the drug combinations or "cocktails" continue to seem to be promising. Velcade (Bortezomib) is now often given orally as a treatment option or in low doses prior to stem cell transplant. Additionally, the combination of velcade with cyclophosphamide and dexamethasone seems to be promising.
So overall, things continue to go well for Chris. However, to be sure, we never take a single day for granted. I know many of the stories such as Paul in NY and the doctor in CT, and those with less successful responses and we both think of all of them often. We have also learned of acquaintances who have recently been diagnosed and will do all we can to reach out and help.
I'll post another update after we get the formal evaluation results. As always a huge THANKS for all those who have helped and shown interest in Chris for the last four years. It means everything to us.
Of course we watch her "numbers" maniacally, and I'll give the basics here as I do not yet have the final report. The most important, her FLC (free light chain) was 45. This continues to inch up ever so slowly in my mind, but they always say the increase in 'insignificant". I look at the overall trend and I do see the random jumping of the number in a + or - 6 point range (39 -45) but that is off a baseline of 600+ back 4 years ago, so overall pretty stable. Chris' other biomarkers also remained equivalent. We watch the 24 hour proteinuria, the BNP, the left ventricle ejection fraction, and the overall heart wall thickness. In general, all seem to be stable although jumping around each evaluation. We will get the famous "call" on Friday, but I've become enough of an expert that I know exactly what they will say: "things look good, don't worry about the slight rise, you look and feel great, so lets do another blood and urine test in 3-4 months". So bottom line is that Chris continues to have a "Very Good Partial Response". My nature, as stated many times in previous blog posts is to keep going until we get a "very good complete response", but they keep telling us there is no need yet. So we live our lives as fully as we can, even thought we know the amyloidosis will come back at some point.
As a quick update as to Chris' ability to live a good life, 4 years after her stem cell transplant, she continues to walk 2-3 miles in the woods most days, goes to a personal trainer 3 days a week, and yoga two times per week. She gardens, helps many of the senior citizens in her life, and travels. This spring Chris and I went to Dubai and India for 2 weeks and she did great. These were long days of trekking through cities like Mumbai and Muscat, but she never tired or felt any nausea or limitations. We even went skiing at an indoor ski slope inside the worlds largest mall in Dubai. She watched our daughter Abby graduate from college in May, will help her move to an apartment in Philly this summer, and will get away most summer weekends to Maine or NH. Finally, we have plans to go to Oktoberfest in Munich followed by a week in Tuscany this fall with our good friends and another trip back to London to see the Patriots play at Wembley. I mention these trips only to let amyloidosis patients understand a few points: 1) it is possible to keep a very active life post diagnosis and post treatment and 2) our belief that we need to do the things we want to do when we can. We never take Chris' health for granted and we never want to regret not taking advantage of her current strength to do the things we want to do. Effectively we have a "carpe diem" approach and I would encourage that attitude amongst all amyloidosis patients.
The other important element of the week at BU is the "support group" meeting on Tuesday. Here, all of the weeks visitors to the center get together and share their stories. I am always fascinated by the stories: how were people diagnosed, what were their symptoms, where are they in the process, what is their disposition, etc. This session included two first time visitors with the deer in the headlights look, a survivor of six years and another survivor of 15 years. Very inspiring stories. I think how scared Chris and I were at our first support group session and the fear we had after reading the stats of average life expectancy. I know the first time visitors have that exact same fear, but I am hopeful that the stories they hear give them hope. Additionally, I think everyone learns the critical importance of a full time caregiver. Those of us who were caregivers shared some of our stories about lifting our patients out of bed, getting them dressed, fed, cleaning up all kinds of messes, etc. Nobody can fight this alone and the caregiver/advocate role is the unheralded, often frustrating, and always rewarding responsibility of someone who has to swallow their ego and their own fears and be the rock of support for the patent.
I continue to watch every clinical trial and every published paper as I have set up Google alerts on key words which I get daily. The trials continue to make progress and the drug combinations or "cocktails" continue to seem to be promising. Velcade (Bortezomib) is now often given orally as a treatment option or in low doses prior to stem cell transplant. Additionally, the combination of velcade with cyclophosphamide and dexamethasone seems to be promising.
So overall, things continue to go well for Chris. However, to be sure, we never take a single day for granted. I know many of the stories such as Paul in NY and the doctor in CT, and those with less successful responses and we both think of all of them often. We have also learned of acquaintances who have recently been diagnosed and will do all we can to reach out and help.
I'll post another update after we get the formal evaluation results. As always a huge THANKS for all those who have helped and shown interest in Chris for the last four years. It means everything to us.
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