Yesterday I had my most recent Avastin treatment. Things went smoothly and the next one will be 4 weeks from now instead of 3 weeks. I had to delay it a week because of a professional committment. Which tells you I am back at work full time and slowly increasing the work load and once again meeting deadlines and honoring committments.
Really, it is reminding me that the ZEN days of chemo when I had to let go of everything and just live in the moment, watching America's Next Top Model and Project Runway and not worrying about anything beyond whether I should invest in some 4 inch heels after I finished chemo were... well they had some aspects to recommend them.
Living in the moment is not that bad.
BIG NEWS - this coming Saturday Oct 16 I have my first appointment for a hair cut since my head was shaved last December. Not that there is really much to cut or that I really want it shorter, but at least it will be intentionally shaped a bit. And mostly, I just like the idea that I have enough hair again to think about cutting it! YEAH for small victories.
Tuesday, October 12, 2010
Tuesday, September 21, 2010
Sorry for being so slow to update
In response to a couple of complaints that I have not updated my blog, i apologize. I am slowly progressing week by week, but since that means I am now working a full 40 hour concentration week at work, I still tend to have limited energy on the weekend and spend a lot of time zoneing out to ensure adequate energy to make it fully through the work week.
I continue to do well. I still get Avastin every 3 weeks - last time yesterday - and will continue to do so through early 2011. And I get physical exams every 6 weeks - next one tomorrow - as well as laboratory testing every 6 weeks - next time in about 3 weeks. And periodic CT scans.
The results of every thing continue to be good - the labs are all normal, the CA-125 (a marker for ovarian cancer that was over 250 before my surgery) continues to be below the normal range. The CT and exams have been without any evidence of disease.
In other words, all things are good.
The recovery continues to be better week by week, but still slower than I would like. I am really working full time now - 40 hours a week of strong concentration - but have to titrate my efforts during off hours to be able to sustain that. My hair is back - not long enough for any intentional shaping, and a rather dull color halfway between grey and dishwater brown. But who can complain?
It has been a busy couple of weeks, with my Aunt Marian in and out of the hospital and needing more assistance from me, a niece moving in and another visiting for a weekend. But that has all been good and it is nice to learn that I can now gear up to extra stress when necessary.
Nothing too exciting to add - but in this world that is pretty good. Hope you all are well. Thanks again for your support.
I continue to do well. I still get Avastin every 3 weeks - last time yesterday - and will continue to do so through early 2011. And I get physical exams every 6 weeks - next one tomorrow - as well as laboratory testing every 6 weeks - next time in about 3 weeks. And periodic CT scans.
The results of every thing continue to be good - the labs are all normal, the CA-125 (a marker for ovarian cancer that was over 250 before my surgery) continues to be below the normal range. The CT and exams have been without any evidence of disease.
In other words, all things are good.
The recovery continues to be better week by week, but still slower than I would like. I am really working full time now - 40 hours a week of strong concentration - but have to titrate my efforts during off hours to be able to sustain that. My hair is back - not long enough for any intentional shaping, and a rather dull color halfway between grey and dishwater brown. But who can complain?
It has been a busy couple of weeks, with my Aunt Marian in and out of the hospital and needing more assistance from me, a niece moving in and another visiting for a weekend. But that has all been good and it is nice to learn that I can now gear up to extra stress when necessary.
Nothing too exciting to add - but in this world that is pretty good. Hope you all are well. Thanks again for your support.
Saturday, August 28, 2010
New CT, Avastin next Monday
I had my most recent CT last Thursday - still no evidence of disease. And I have my next dose of Avastin on Monday.
This whole recovery process is slower than I had anticipated. I am better every week, but still running out of concentrating ability by Friday and having to carefully titrate my physical and mental energy investments. This is normal, I am told / was warned by my doc and chemo nurse and other women who have been through the same process. As long as I am having good outcomes I try not to complain.
Hard to believe that September is just around the corner. Where did the summer go? Since I don't tolerate heat very well these days, for once I am not sorry to see the summer go.
This whole recovery process is slower than I had anticipated. I am better every week, but still running out of concentrating ability by Friday and having to carefully titrate my physical and mental energy investments. This is normal, I am told / was warned by my doc and chemo nurse and other women who have been through the same process. As long as I am having good outcomes I try not to complain.
Hard to believe that September is just around the corner. Where did the summer go? Since I don't tolerate heat very well these days, for once I am not sorry to see the summer go.
Saturday, August 14, 2010
No evidence of residual disease & genetic testing results
My sister asked when I will know if I am in remission, and several of you have asked for updates.
At the moment, just over 9 months after surgery and more than 3 months after finishing the standard chemotherapy, I have no evidence of residual disease by physical exam, CT scan, or blood test (CA-125, which is not reliable for everyone but was elevated in me prior to surgery, less so but still high after surgery and before chemo, and has been in the normal and very low range very since). That is good news. That is, in fact, as good as it can get at this point.
I am still taking my investigational drug, Avastin, every 3 weeks through next February or so. I have developed high blood pressure as a result of the Avastin - a common and some times dangerous complication. But so far my blood pressure is adequately controlled with my medication, so I can continue the Avastin hopefully through the end of the intended course.
I had my most recent physical exam last Thursday (occur every 6 weeks), and will have the next set of lab tests (also occur every 6 weeks) and the next CT scan before this month is out. So all is good.
My energy, stamina and mental concentration continue to improve weekly, but are still not back to normal yet. The neuropathy (nerve damage from the chemotherapy that resulted in numbness, tingling and weakness in my feet and legs) has improved tremendously but still is not back to normal. It has improved enough for me to realize that I have a corn on one foot and probably a Morton's neuroma (a painful nerve condition) on the other that were not bothering me as long as my feet were numb - so recovery is a mixed blessing! I am not getting back to normal as fast as I would like, and it is harder and harder to tell, when I nap on a weekend day, whether that is evidence of wisely "listening to my body" or evidence of just being lazy. Good to be at a point where I have to worry about the difference again...
How long can I expect to continue to have no evidence of disease? Impossible to tell. And believe me, I have tried to find medical literature that will predict it for all sorts of reasons. Most recently my air conditioning went out this weekend and I have to decide between a short term investment of replacing an engine and condensor or a long term investment of replacing the whole system.
One study predicts an average of 10.4 months before recurrence among stage III and IV patients who got standard chemo, extended nearly a year longer by Avastin (I am stage III, but Stage III C, so close to stage IV). Another predicts an additional 2 years on average of disease free survival added by the investigational dosing I got on this investigational trial. Overall the statistics say 20-40% 5 year survival and about 10% 10 year. And if you get 10 years out without evidence of recurrent disease, I am not sure what that means with ovarian cancer, but I think you can think in terms of possibly a cure. Who knows. I have good reason to be optimistic that my experience may be predicted by the more optimistic statistics, but no way to know for sure.
I think I am going to replace the whole AC system and assume I am investing for the long run.
Since there have been at least 2 instances of ovarian cancer and another 2 of breast cancer among our extended family and I know some of you have been worrying about what it means for your own risk or that of your daughters, I decided to get tested for the BRCA1 and BRCA2 genes (the genes recognized to be associated with hereditary risk for ovarian and breast cancer). The good news is that my tests were entirely normal with no mutation detected. Does that absolutely garantee that there is no increased genetic risk for breast or ovarian cancer in our family? Well, no. There is always a possibility that there is a rare genetic risk not recognized by these tests (and not yet identified by science). But it makes it unlikely.
And it is also possible that others of you may have one of these mutations, even though I do not. If you really want to know your own risk, then you (or your mother) needs to be tested. But this suggests to me that there is likely no clear genetic risk that came through the Walker side of the family, which is the side shared by 3 of the 4 cases mentioned above. So my disease does not likely have ominous implications for anyone else.
On another note, last week 3 women asked me who cut my hair. It made me laugh. But grateful that I again have enough hair for people to actually mistake my style as a fashion choice, I optimistically dropped by my stylist to inquire how much longer it needs to get before he can do some intentional shaping. He told me to come back in another month or so...
I think I am going to keep it short. It feels great in this really hot weather and is awfully easy to manage.
At the moment, just over 9 months after surgery and more than 3 months after finishing the standard chemotherapy, I have no evidence of residual disease by physical exam, CT scan, or blood test (CA-125, which is not reliable for everyone but was elevated in me prior to surgery, less so but still high after surgery and before chemo, and has been in the normal and very low range very since). That is good news. That is, in fact, as good as it can get at this point.
I am still taking my investigational drug, Avastin, every 3 weeks through next February or so. I have developed high blood pressure as a result of the Avastin - a common and some times dangerous complication. But so far my blood pressure is adequately controlled with my medication, so I can continue the Avastin hopefully through the end of the intended course.
I had my most recent physical exam last Thursday (occur every 6 weeks), and will have the next set of lab tests (also occur every 6 weeks) and the next CT scan before this month is out. So all is good.
My energy, stamina and mental concentration continue to improve weekly, but are still not back to normal yet. The neuropathy (nerve damage from the chemotherapy that resulted in numbness, tingling and weakness in my feet and legs) has improved tremendously but still is not back to normal. It has improved enough for me to realize that I have a corn on one foot and probably a Morton's neuroma (a painful nerve condition) on the other that were not bothering me as long as my feet were numb - so recovery is a mixed blessing! I am not getting back to normal as fast as I would like, and it is harder and harder to tell, when I nap on a weekend day, whether that is evidence of wisely "listening to my body" or evidence of just being lazy. Good to be at a point where I have to worry about the difference again...
How long can I expect to continue to have no evidence of disease? Impossible to tell. And believe me, I have tried to find medical literature that will predict it for all sorts of reasons. Most recently my air conditioning went out this weekend and I have to decide between a short term investment of replacing an engine and condensor or a long term investment of replacing the whole system.
One study predicts an average of 10.4 months before recurrence among stage III and IV patients who got standard chemo, extended nearly a year longer by Avastin (I am stage III, but Stage III C, so close to stage IV). Another predicts an additional 2 years on average of disease free survival added by the investigational dosing I got on this investigational trial. Overall the statistics say 20-40% 5 year survival and about 10% 10 year. And if you get 10 years out without evidence of recurrent disease, I am not sure what that means with ovarian cancer, but I think you can think in terms of possibly a cure. Who knows. I have good reason to be optimistic that my experience may be predicted by the more optimistic statistics, but no way to know for sure.
I think I am going to replace the whole AC system and assume I am investing for the long run.
Since there have been at least 2 instances of ovarian cancer and another 2 of breast cancer among our extended family and I know some of you have been worrying about what it means for your own risk or that of your daughters, I decided to get tested for the BRCA1 and BRCA2 genes (the genes recognized to be associated with hereditary risk for ovarian and breast cancer). The good news is that my tests were entirely normal with no mutation detected. Does that absolutely garantee that there is no increased genetic risk for breast or ovarian cancer in our family? Well, no. There is always a possibility that there is a rare genetic risk not recognized by these tests (and not yet identified by science). But it makes it unlikely.
And it is also possible that others of you may have one of these mutations, even though I do not. If you really want to know your own risk, then you (or your mother) needs to be tested. But this suggests to me that there is likely no clear genetic risk that came through the Walker side of the family, which is the side shared by 3 of the 4 cases mentioned above. So my disease does not likely have ominous implications for anyone else.
On another note, last week 3 women asked me who cut my hair. It made me laugh. But grateful that I again have enough hair for people to actually mistake my style as a fashion choice, I optimistically dropped by my stylist to inquire how much longer it needs to get before he can do some intentional shaping. He told me to come back in another month or so...
I think I am going to keep it short. It feels great in this really hot weather and is awfully easy to manage.
Tuesday, August 3, 2010
I keep hearing I need to post an update
So here it is. My blood pressure seems to be doing well - dialystolics (lower number) usually below 90 which is good and systolics (high number) staying in reasonable ranges as long as I remember to take my medicine.
the medicine itself sometimes has the side effect of making people feel really tired and sometimes even inducing clinical depression. I don't recognize an impact, but it would be hard to tell since I am tired all the time these days anyway but anything feels better than I did.
Strength and endurance continues to improve by the week. I am not doing a detail (have been loaned to another office for a temporary project) that has me working and concentrating all day. I can tell I am more tired at the end of the day, but I am managing close to normal productivity although I still try to keep my day to 8 hours and no longer. So that is all good.
Some days I feel almost normal. And other days I feel like this is the hardest part, with certainty about the future lending a sense of urgency to the desire to recover fully and complete every thing that matters as efficiently as possible. When it all gets overwhelming I retreat to the recliner and nap. Things are usually better when I wake up.
And the neuropathy continues to retreat. Some days i am hardly aware of it until I pay attention to the fact that I continue to walk more like Frankenstein than a ballerina. Still balance is less of a problem and the feet are feeling closer to normal. All is good.
Louisa
the medicine itself sometimes has the side effect of making people feel really tired and sometimes even inducing clinical depression. I don't recognize an impact, but it would be hard to tell since I am tired all the time these days anyway but anything feels better than I did.
Strength and endurance continues to improve by the week. I am not doing a detail (have been loaned to another office for a temporary project) that has me working and concentrating all day. I can tell I am more tired at the end of the day, but I am managing close to normal productivity although I still try to keep my day to 8 hours and no longer. So that is all good.
Some days I feel almost normal. And other days I feel like this is the hardest part, with certainty about the future lending a sense of urgency to the desire to recover fully and complete every thing that matters as efficiently as possible. When it all gets overwhelming I retreat to the recliner and nap. Things are usually better when I wake up.
And the neuropathy continues to retreat. Some days i am hardly aware of it until I pay attention to the fact that I continue to walk more like Frankenstein than a ballerina. Still balance is less of a problem and the feet are feeling closer to normal. All is good.
Louisa
Saturday, July 17, 2010
New Wrinkle
Thursday I had my 6 week stop for laboratory testing. Elizabeth, my excellent chemo nurse, noted that my Blood pressure was running high and asked if that had been a problem before. I had taken my BP regularly at the beginning of my chemo but had neglected to do so in recent months.
I was feeling pretty lousy Thursday and returned home to nap in the recliner and watch TV. So I was pretty relaxed when I decided maybe I should haul out my BP kit and take my BP again. Wow - never knew it could be that high. Repeated it several times thinking maybe I was doing something wrong, but it just kept being high and sometimes getting higher, including the next morning when I took it before getting out of bed, and again before departing for work.
So to make a long story short - yesterday I got to start medicine for hypertension. This is not so unusual I think - as this is a known complication of the Avastin. I am relieved that I get to take medication for the BP and keep taking the Avastin.
And I feel much better today. Interesting, as I always tell patients that high blood pressure does not make you feel bad, but it raises your risk of stroke and heart attack so it is important to treat it. But now I am wondering if my feeling lously all over, then better after starting the meds means that, at least some times, hypertension DOES make you feel bad as well as raising your risk of stroke and heart attacks.
You learn a lot by being a patient. Maybe I should take my BP again and see if feeling better corresponds to a lower BP...
Always something new and exciting.
I was feeling pretty lousy Thursday and returned home to nap in the recliner and watch TV. So I was pretty relaxed when I decided maybe I should haul out my BP kit and take my BP again. Wow - never knew it could be that high. Repeated it several times thinking maybe I was doing something wrong, but it just kept being high and sometimes getting higher, including the next morning when I took it before getting out of bed, and again before departing for work.
So to make a long story short - yesterday I got to start medicine for hypertension. This is not so unusual I think - as this is a known complication of the Avastin. I am relieved that I get to take medication for the BP and keep taking the Avastin.
And I feel much better today. Interesting, as I always tell patients that high blood pressure does not make you feel bad, but it raises your risk of stroke and heart attack so it is important to treat it. But now I am wondering if my feeling lously all over, then better after starting the meds means that, at least some times, hypertension DOES make you feel bad as well as raising your risk of stroke and heart attacks.
You learn a lot by being a patient. Maybe I should take my BP again and see if feeling better corresponds to a lower BP...
Always something new and exciting.
Saturday, July 10, 2010
Update July 10,2010
Just returned from 9 days in Cherokee NC practicing medicine at the Cherokee Indian Hospital Urgent Care Clinic. Can't say I was really able to pull my weight, but at least I pretended to. For example, one day in clinic I saw 5 patients - the other doc saw 15 in the same time period. But the Cherokee folks were very supportive as usual, I enjoyed the switch and it gave me a good opportunity to compare my current progress against a real benchmark. In Atlanta and at CDC after spending the last 2 month of chemo in a recliner chair just about anything I do feels like progress. In Cherokee the bench mark was what did I usually do when there.
First - I could not pick up my "clinical bag", a large canvas sack that stores all the things I need (or may need) when practicing clinical medicine but do not (or rarely) need at CDC. When I finish a clinical stint I wash my white coat and repack the bag so it will be ready for the next time. It is usually packed with things I use often (like little paperback references) or continually (like my stethoscope) but also with things I use rarely or only theoretically need (like a large book on trauma medicine). IT is always too heavy, and I also think I should lighten it up. But this time I had to remove the things I knew I would not be using this time around before I could pick it up.
Second - I found the hike up from the lower parking lot - which always leaves me thinking I need to work out more - was totally exhausting. I managed it but had to stop and rest several times. After the first couple of days I parked in the closer patient parking or permenent staff parking areas and avoided the hike.
Third - just sitting on a stool without a back is more energy demanding than sitting in a chair with a back. I never really noticed this before, but i was very aware of it this time.
Fourth - On Monday it was a holiday so the clinic was closed and I was an add on in the ED. I bowed out and went home after only about a 6 hour day feeling really exhausted. And despite my plans to capture some of the folks who were very supportive to me during chemo and take them to lunch after church on Sunday, without an alarm I failed to wake up until 11:45. So no church, no capturing, no treating folks to lunch or even seeing them. Well - next time.
Fifth - in addition to the physical stamina limits, It was very clear to me that as I get more tired, my ability to think clearly and precisely and efficiently also declined.
Still all in all it went relatively well. I was delighted to be back in Cherokee and Sylva for a short while. I really enjoyed being in the mountains. And it was good to have a more solid comparison to assess where I stand in terms of come back. And the increased physical demands left me thinking it is probably time to begin intentional exercise again - although likely limited to the end of the week so I don't wear out when I still need to make it to work the next morning.
First - I could not pick up my "clinical bag", a large canvas sack that stores all the things I need (or may need) when practicing clinical medicine but do not (or rarely) need at CDC. When I finish a clinical stint I wash my white coat and repack the bag so it will be ready for the next time. It is usually packed with things I use often (like little paperback references) or continually (like my stethoscope) but also with things I use rarely or only theoretically need (like a large book on trauma medicine). IT is always too heavy, and I also think I should lighten it up. But this time I had to remove the things I knew I would not be using this time around before I could pick it up.
Second - I found the hike up from the lower parking lot - which always leaves me thinking I need to work out more - was totally exhausting. I managed it but had to stop and rest several times. After the first couple of days I parked in the closer patient parking or permenent staff parking areas and avoided the hike.
Third - just sitting on a stool without a back is more energy demanding than sitting in a chair with a back. I never really noticed this before, but i was very aware of it this time.
Fourth - On Monday it was a holiday so the clinic was closed and I was an add on in the ED. I bowed out and went home after only about a 6 hour day feeling really exhausted. And despite my plans to capture some of the folks who were very supportive to me during chemo and take them to lunch after church on Sunday, without an alarm I failed to wake up until 11:45. So no church, no capturing, no treating folks to lunch or even seeing them. Well - next time.
Fifth - in addition to the physical stamina limits, It was very clear to me that as I get more tired, my ability to think clearly and precisely and efficiently also declined.
Still all in all it went relatively well. I was delighted to be back in Cherokee and Sylva for a short while. I really enjoyed being in the mountains. And it was good to have a more solid comparison to assess where I stand in terms of come back. And the increased physical demands left me thinking it is probably time to begin intentional exercise again - although likely limited to the end of the week so I don't wear out when I still need to make it to work the next morning.
Tuesday, June 29, 2010
Update - June 29
Since my last update I have received my Avastin (yesterday Monday June 28) and had a follow up exam with my physician (a couple of weeks ago). the exam is still good with no evidence of recurrence, and the lab test CA-125 remains in the low normal range. All good.
When I went for Avastin yesterday my nurse had trouble getting blood return through my port. (the "port" is the thing that was inserted into a vein to give constant access to my blood and veins. "Blood return" means when the nurse injected a syringe of liquid into the vein through the port, but then pulled back to create a vaccume blood came into the syringe. Or in this case, blood did NOT come into the port). This means that little blood clots have developed on the inside of the port blocking blood access. This has happened only once before - when I went to the place in Atlanta for one of my blood transfusions.
In this case the problem is probably that blood is so infrequently collected through this port and medicine so infrequently injected. I only receive the Avastin every 3 weeks now, and I only have blood work done every 6 weeks.
the nurse was able to fix the problem by injecting an enzyme that digests the blood clots - but she had to do it twice. And wait 45 min - 1 hour after each injection to see the result. Since my medicine was not available when I arrived and we had to wait for that, only to learn that the port was not working, and then had to inject the streptokinase (the enqzyme that eats blood clots) twice and wait an hour after each injection, I was at the doctor's pretty much all day. Good thing I took work along. And good thing my colleague did not take me up on my offer to come into work that afternoon after I finished my chemo (anticiapted to be by noon, but not completed till nearly 4 pm).
Other news:
(1) My hair is coming back!!! I am so happy to have hair at all that I don't care if it is very short and sort of sparce and I still look like a marine at boot camp (a very old, very fat, very out of shape marine...)
(2) last week I took Thursday off and drove to Jackson, Mississippi to see neice Louisa M Chapman and her regional ballet troupe perform in the international ballet competition. It was well worth the trip, even if we could not find a very exciting place to have dinner after ward. I gather that Jackson, MS residents do not fancy night life outside of their living rooms.
(3) Tomorrow night I go to Cherokee NC to practice clinical medicine again in the Cherokee Indian Hospital clinic July 1 - 9. I think I am up to it, but I am a bit nervous about the ability to manage a day that is more physically stressful (have to stand and walk all day) and that requires constant attention and decision making. for obvious reasons, I am skipping the ED this year. dEfinitely not up to that yet.
(4) Main continuing problem is the neuropathy that developed from one of my chemotherapy agents. It has definitly improved since I finished the standard chemo. However, I still have trouble with my feet, am clumsy walking and occasionally have balance problems. I just have to hope it continues to improve. On the good news side, I no longer have to ask the vet to apply flea stuff to my dogs becasue i can again manage to open the containers myself. For a while there I could not. I stil have clumsy hands occasionally, but I think it is mainly normal clumsy rather than neuropathy clumsy. I am inclined, however, to attribute all my typos to neuropathy, rather than attribute them to sloppiness or my historic problems with spelling anything correctly.
Louisa
When I went for Avastin yesterday my nurse had trouble getting blood return through my port. (the "port" is the thing that was inserted into a vein to give constant access to my blood and veins. "Blood return" means when the nurse injected a syringe of liquid into the vein through the port, but then pulled back to create a vaccume blood came into the syringe. Or in this case, blood did NOT come into the port). This means that little blood clots have developed on the inside of the port blocking blood access. This has happened only once before - when I went to the place in Atlanta for one of my blood transfusions.
In this case the problem is probably that blood is so infrequently collected through this port and medicine so infrequently injected. I only receive the Avastin every 3 weeks now, and I only have blood work done every 6 weeks.
the nurse was able to fix the problem by injecting an enzyme that digests the blood clots - but she had to do it twice. And wait 45 min - 1 hour after each injection to see the result. Since my medicine was not available when I arrived and we had to wait for that, only to learn that the port was not working, and then had to inject the streptokinase (the enqzyme that eats blood clots) twice and wait an hour after each injection, I was at the doctor's pretty much all day. Good thing I took work along. And good thing my colleague did not take me up on my offer to come into work that afternoon after I finished my chemo (anticiapted to be by noon, but not completed till nearly 4 pm).
Other news:
(1) My hair is coming back!!! I am so happy to have hair at all that I don't care if it is very short and sort of sparce and I still look like a marine at boot camp (a very old, very fat, very out of shape marine...)
(2) last week I took Thursday off and drove to Jackson, Mississippi to see neice Louisa M Chapman and her regional ballet troupe perform in the international ballet competition. It was well worth the trip, even if we could not find a very exciting place to have dinner after ward. I gather that Jackson, MS residents do not fancy night life outside of their living rooms.
(3) Tomorrow night I go to Cherokee NC to practice clinical medicine again in the Cherokee Indian Hospital clinic July 1 - 9. I think I am up to it, but I am a bit nervous about the ability to manage a day that is more physically stressful (have to stand and walk all day) and that requires constant attention and decision making. for obvious reasons, I am skipping the ED this year. dEfinitely not up to that yet.
(4) Main continuing problem is the neuropathy that developed from one of my chemotherapy agents. It has definitly improved since I finished the standard chemo. However, I still have trouble with my feet, am clumsy walking and occasionally have balance problems. I just have to hope it continues to improve. On the good news side, I no longer have to ask the vet to apply flea stuff to my dogs becasue i can again manage to open the containers myself. For a while there I could not. I stil have clumsy hands occasionally, but I think it is mainly normal clumsy rather than neuropathy clumsy. I am inclined, however, to attribute all my typos to neuropathy, rather than attribute them to sloppiness or my historic problems with spelling anything correctly.
Louisa
Monday, June 7, 2010
Labs last Thursday, Avastin today
In the past couple of weeks I graduated to only getting labs tested every 6 weeks - which means my blood cell counts have come back to more or less normal after the standard chemo and remained stable for several weeks. That is good news.
My most recent lab tests were last Thursday, followed by Avastin today. Currently my energy seems to take me pretty well through 3-4 days a week, then I get worn out and take it very slowly for a couple of days and recover. This week I am stepping up to working 4 (rather than 3) days a week. We will see how it goes...
My hair has returned to a sort of peach fuzz state all over my head. I suppose if you have not seem me at the end of my chemo with essentially no hair it does not look like progress. But believe me, it is progress. These days I mostly go hatless except when I need protection from the sun, which is any time I am out.
Results of the clinical trial that tested women who got standard chemo against women who got standard chemo plus Avastin during and for 10 months after standard chemo have been released and document a "progression-free survival" (time you live with no evidence of the cancer coming back or growing larger) advantage of about 4 months for women who got Avastin over those who did not.
Since I am getting Avastin, this is good news for me.Combined with the Japanese trial that suggests that dose dense TAxol (the kind of standard chemo I got where I received carboplatin every 21 days but got Taxol every week) gives on average about a 2 year progression=free survival advantage over the standard method of dosing (carboplatin and taxol both only once every 21 days) and i am feeling that it was a very good thing for me to have entered this trial.
The remaining question, which the trial I am in is designed to answer, is whether there is a survival advantage to getting standard chemo directly into the belly (intraperitoneal or IP) rather than into a vein (Intravenous or IV). Guess we will have to wait for the outcome of this trial to learn that answer. STudies to date suggest that there may be some advantage to IP treatment over standard IV chemo, but that is the chemo where both drugs are given only once every 21 days. No way to know what would happen with the Dense dosing of Taxol which I received.
Meanwhile, I increased my work days from 3 per week to a planned 4 per week starting this week. I have no plans to "overdo it" as many have expressed concern that I might. But at the same time, I see no advantage in prolonging an convalesence any longer than necessary. Sitting watching TV is loosing its charm - but I need to build back a bit more strength and endurance before i am ready to venture out on vacation trips or other outings. So pushing myself a little bitter further physically and mentally every week seems the best way to maximize the efficiency with which I get from where I am to where I want to be.
Thanks for your support.
My most recent lab tests were last Thursday, followed by Avastin today. Currently my energy seems to take me pretty well through 3-4 days a week, then I get worn out and take it very slowly for a couple of days and recover. This week I am stepping up to working 4 (rather than 3) days a week. We will see how it goes...
My hair has returned to a sort of peach fuzz state all over my head. I suppose if you have not seem me at the end of my chemo with essentially no hair it does not look like progress. But believe me, it is progress. These days I mostly go hatless except when I need protection from the sun, which is any time I am out.
Results of the clinical trial that tested women who got standard chemo against women who got standard chemo plus Avastin during and for 10 months after standard chemo have been released and document a "progression-free survival" (time you live with no evidence of the cancer coming back or growing larger) advantage of about 4 months for women who got Avastin over those who did not.
Since I am getting Avastin, this is good news for me.Combined with the Japanese trial that suggests that dose dense TAxol (the kind of standard chemo I got where I received carboplatin every 21 days but got Taxol every week) gives on average about a 2 year progression=free survival advantage over the standard method of dosing (carboplatin and taxol both only once every 21 days) and i am feeling that it was a very good thing for me to have entered this trial.
The remaining question, which the trial I am in is designed to answer, is whether there is a survival advantage to getting standard chemo directly into the belly (intraperitoneal or IP) rather than into a vein (Intravenous or IV). Guess we will have to wait for the outcome of this trial to learn that answer. STudies to date suggest that there may be some advantage to IP treatment over standard IV chemo, but that is the chemo where both drugs are given only once every 21 days. No way to know what would happen with the Dense dosing of Taxol which I received.
Meanwhile, I increased my work days from 3 per week to a planned 4 per week starting this week. I have no plans to "overdo it" as many have expressed concern that I might. But at the same time, I see no advantage in prolonging an convalesence any longer than necessary. Sitting watching TV is loosing its charm - but I need to build back a bit more strength and endurance before i am ready to venture out on vacation trips or other outings. So pushing myself a little bitter further physically and mentally every week seems the best way to maximize the efficiency with which I get from where I am to where I want to be.
Thanks for your support.
Monday, May 24, 2010
First professional travel, peach fuzz extending its territory on my head
Last week I did my first professional travel since Chemo - 2 days in Washington DC attending a meeting (wed) and chairing a meeting (thurs). I am pleased to report that all went well. My energy and concentration were adequate for both tasks, although on Wed I did take an hour long nap between the meeting and dinner, and on Thurs after the meeting ended an hour earlier than scheduled, by the time it had been scheduled to end I was in my hotel room in my PJs sacked out on the bed watching TV. I did not leave that room again until I checked out the next morning - even ordered room service in for dinner.
But it went well, and I was able to visit with several friends in the DC area before returning to Atlanta Sunday night.
Other evidence of progress:
(1) my blood cell counts have been high and stable enough that I was able to skip my lab test the previous week. Hopefully soon the weekly testing will no longer be necessary.
(2) my head is mostly covered by peach fuzz - all areas except the very top. Clear evidence that however slowly my hair is starting to return. YEAH!
My 3rd dose of Avastin, the investigational drug that I get every 3 weeks for nearly a year after finishing the standard chemotherapy on April 12, will be 2 weeks from today. In the absence of really major events, I probably will not update this blog more frequently than at the time of each dose of Avastin. In other words, every 3 weeks starting 2 weeks from today.
Again thank you for your support.
But it went well, and I was able to visit with several friends in the DC area before returning to Atlanta Sunday night.
Other evidence of progress:
(1) my blood cell counts have been high and stable enough that I was able to skip my lab test the previous week. Hopefully soon the weekly testing will no longer be necessary.
(2) my head is mostly covered by peach fuzz - all areas except the very top. Clear evidence that however slowly my hair is starting to return. YEAH!
My 3rd dose of Avastin, the investigational drug that I get every 3 weeks for nearly a year after finishing the standard chemotherapy on April 12, will be 2 weeks from today. In the absence of really major events, I probably will not update this blog more frequently than at the time of each dose of Avastin. In other words, every 3 weeks starting 2 weeks from today.
Again thank you for your support.
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