OT My, how time flies!

Rita L. in MA <One eyed> Mutant Ninja Quilter :-)

Rita L. in MA - <One eyed> Mutant Ninja Quilter :-)

> Hi All,
>
> It is astonishing to me that two months have passed since the last time
> I sent an update on the state of my health to this list! Given that,
> the message will likely get very long :-) For those who would just like
> the "short and sweet" version:
>
> I had been doing very well for quite a while. In August I learned that
> my treatment ( Avastin ) was not working as well as hoped and I was
> back-sliding a bit. A new drug ( Tarceva) was ordered and I was to
> switch to that in September. For a variety of reasons that change
> (which turned out to be an addition rather than a change) didn't happen
> until the end of September. Then I caught a very bad cold that went to
> pneumonia and probably owing to some of the medications for that, my
> blood pressure rose to unsafe levels for the continuation of Avastin so
> I am on the new drug alone until the BP issue can be resolved. Despite
> all of this, I am feeling quite well except for a lot of fatigue -
> afternoon naps are nice though :-) That is the short story. The long
> story follows for those who like details.
>
> *** *** *** *** *** *** *** *** *** *** *** *** ***
>
> Previously on all-about-rita:
>
> Things were going along fine until August when CT scan revealed that
> tumor had enlarged a bit and that there was evidence of spread in both
> lungs ( pretty much like the original diagnosis only not quite so bad).
> Avastin is not working as well as we had hoped and I need to switch ( I
> thought ) to another drug - Tarceva. It takes some time to get approval
> and the switch is planned for September.
>
> The last month or so:

--------------------8<Gently trimmed saga>8-------------------

>
> Thank you for your continued support. I can feel it every day!

> Hi All,
> It is astonishing to me that two months have passed since the last time
> I sent an update on the state of my health to this list! Given that,
> the message will likely get very long :-) For those who would just like
> the "short and sweet" version:
> I had been doing very well for quite a while. In August I learned that
> my treatment ( Avastin ) was not working as well as hoped and I was
> back-sliding a bit. A new drug ( Tarceva) was ordered and I was to
> switch to that in September. For a variety of reasons that change
> (which turned out to be an addition rather than a change) didn't happen
> until the end of September. Then I caught a very bad cold that went to
> pneumonia and probably owing to some of the medications for that, my
> blood pressure rose to unsafe levels for the continuation of Avastin so
> I am on the new drug alone until the BP issue can be resolved. Despite
> all of this, I am feeling quite well except for a lot of fatigue -
> afternoon naps are nice though :-) That is the short story. The long
> story follows for those who like details.
> *** *** *** *** *** *** *** *** *** *** *** ***
> ***
> Previously on all-about-rita:
> Things were going along fine until August when CT scan revealed that
> tumor had enlarged a bit and that there was evidence of spread in both
> lungs ( pretty much like the original diagnosis only not quite so bad).
> Avastin is not working as well as we had hoped and I need to switch ( I
> thought ) to another drug - Tarceva. It takes some time to get approval
> and the switch is planned for September.
> The last month or so:
> September comes and now things get sticky. Ray, Jean (my sister) and I
> have a vacation planned for two weeks beginning September 20th until
> October 4th. I have explained this to Dr. D a couple of times since the
> August report and arranged appointments to work around those dates. She
> doesn't want to put me on new medication until after we get back. I
> find this frightening but she says I will be fine. She says that she
> will get approval and order the Tarceva. Meanwhile, I continue to get
> Avastin because it "sort of" works and is better than nothing. In fact,
> we decide that I will continue to get Avastin in conjunction with
> Tarceva because recent studies indicate that they form a symbiotic
> relationship and are more effective together. On Sept. 18th I have an
> appointment to see her and get an Avastin infusion. She asks me if I
> have picked up the Tarceva (it is in pill form) from the pharmacy.
> What? Nobody told me that it would be at the pharmacy. I had foolishly
> assumed that it would be dispensed at the hospital. I was also
> expecting to get it after returning from vacation. Her feeling is that
> I should have it with me "just in case". Fortunately one of the nurses
> thinks to check with the pharmacy to be sure that the drug had been put
> up for me. It hadn't. Turns out that not only does the Dr. need to get
> an approval, the pharmacy does too and they didn't get it. Many phone
> calls are made to many people while I sat comfortably being medicated.
> It all works out in the end. I get the pills and instructions to start
> taking them whenever I think I need to. I just LOVE having that
> responsibility - not! Further discussion results in her telling me to
> start taking them on the second Monday of our trip. So far, so good. I
> will do this and will see her on the Monday after we return.
> The first week of vacation went well. We had deliberately avoided
> planning too many activities. This one was for rest, relaxation and
> visiting a few friends the we only get to see very rarely (like our Pat in
> VA :-) We had a very nice lunch and chat one day.). On Tuesday
> of the second week Jean caught a pretty bad cold. She did her best to
> stay away from me so I wouldn't get it but by Thursday I had it too.
> Friday was a "last chance to do whatever we missed" day as well as a
> "pack up" evening in preparation for a Saturday morning departure for
> home. I managed to get through that day but was very tired and had
> almost no appetite :-( The ride home (10 hours) was tiring and I was
> feeling worse with every mile. Ray does all the driving but just
> sitting there was wearing me out. At mid-day I decided to call my
> doctor and ask if this could be related to or complicated by the Tarceva
> that I had been taking for 5 days at this point. Of course, it was
> Saturday and she was not on call. The on call doctor didn't think that
> the Tarceva had anything to do with the cold but he approved skipping it
> for a few days. By the time we were nearing home, I decided that I
> wanted to skip our traditional stop for dinner before getting to the
> house. I just wanted to go to bed. I did go to bed but continued to
> feel really bad. I called the doctor again. This time he recommended
> the ER, which Ray had pretty much decided we needed to do anyway. This
> was a novel experience for me. I could find my way around Emerson's ER
> with a blindfold on after taking others there so many times but this was
> my first time as a patient! It isn't really much different :-) Three
> hours, two nebulizer treatments, a chest xray and a cursory exam later,
> I was sent home with a cough syrup prescription and a Vicodin tablet to
> get me through until Monday - visit with Dr. D.
> Monday's (Oct. 5th) appointment was meant to be an Avastin infusion and
> a check up to see how I was handling the Tarceva. Of course, I had a
> lot more to talk about. Not only was I suffering the cold but I was
> dehydrated as well. The Tarceva is, so far, a non issue. It is
> supposed to produce a facial rash after a few weeks but has not yet done
> so. Its major side effect for me up to this point is fatigue. I'm
> hoping that problem will resolve or reduce after all the extraneous
> medications prescribed for the ^#$^% cold, which morphed into pneumonia,
> are purged from my body. My dresser looks like a CVS annex. Avastin
> raises blood pressure and cannot be given if one's pressure is already
> at the "high" level. The inhaler that was prescribed for the pneumonia
> symptoms raises blood pressure. I can't even begin to guess what the
> other stuff does. Anyway, my pressure was too hight to get the
> scheduled Avastin on that Monday so I was asked to come back on
> Wednesday to try again. I did get a fluid infusion for the
> dehydration. Same story last Wednesday - no Avastin but did get fluids
> and was asked to come back in a week - Thursday of this week - to try
> again. Pressure is still high and still no Avastin - no fluids this
> time either though :-) I'll go back next Thursday to try again. My
> arms are looking like purple pin cushions :-(
> So, that is where I stand at the moment. I have no idea how my cancer
> is doing because of all the "noise" around it for the past several
> weeks. I do hope that the BP issue resolves because I very much want to
> have both drugs working for me. Right now it is pretty much just
> Tarceva because the Avastin should be purged by this time. I am told
> that it takes a couple of months for any discernible effects of Tarceva
> to appear so there is no benefit to having a CT scan for a while.
> Whatever! Except for the fatigue I am feeling pretty good. I have been
> on house arrest for two weeks but will probably go into my office next
> week if I wake up. We'll see.
> Thank you for your continued support. I can feel it every day!
> Rita
> ----------
> Rita L. in MA <One eyed> Mutant Ninja Quilter :-)
> --
> Rita L. in MA - <One eyed> Mutant Ninja Quilter :-)

> Hi All,
>
> It is astonishing to me that two months have passed since the last time
> I sent an update on the state of my health to this list! Given that,
> the message will likely get very long :-) For those who would just like
> the "short and sweet" version:
>
> I had been doing very well for quite a while. In August I learned that
> my treatment ( Avastin ) was not working as well as hoped and I was
> back-sliding a bit. A new drug ( Tarceva) was ordered and I was to
> switch to that in September. For a variety of reasons that change
> (which turned out to be an addition rather than a change) didn't happen
> until the end of September. Then I caught a very bad cold that went to
> pneumonia and probably owing to some of the medications for that, my
> blood pressure rose to unsafe levels for the continuation of Avastin so
> I am on the new drug alone until the BP issue can be resolved. Despite
> all of this, I am feeling quite well except for a lot of fatigue -
> afternoon naps are nice though :-) That is the short story. The long
> story follows for those who like details.
>
> *** *** *** *** *** *** *** *** *** *** *** *** ***
>
> Previously on all-about-rita:
>
> Things were going along fine until August when CT scan revealed that
> tumor had enlarged a bit and that there was evidence of spread in both
> lungs ( pretty much like the original diagnosis only not quite so bad).
> Avastin is not working as well as we had hoped and I need to switch ( I
> thought ) to another drug - Tarceva. It takes some time to get approval
> and the switch is planned for September.
>
> The last month or so:
>
> September comes and now things get sticky. Ray, Jean (my sister) and I
> have a vacation planned for two weeks beginning September 20th until
> October 4th. I have explained this to Dr. D a couple of times since the
> August report and arranged appointments to work around those dates. She
> doesn't want to put me on new medication until after we get back. I
> find this frightening but she says I will be fine. She says that she
> will get approval and order the Tarceva. Meanwhile, I continue to get
> Avastin because it "sort of" works and is better than nothing. In fact,
> we decide that I will continue to get Avastin in conjunction with
> Tarceva because recent studies indicate that they form a symbiotic
> relationship and are more effective together. On Sept. 18th I have an
> appointment to see her and get an Avastin infusion. She asks me if I
> have picked up the Tarceva (it is in pill form) from the pharmacy.
> What? Nobody told me that it would be at the pharmacy. I had foolishly
> assumed that it would be dispensed at the hospital. I was also
> expecting to get it after returning from vacation. Her feeling is that
> I should have it with me "just in case". Fortunately one of the nurses
> thinks to check with the pharmacy to be sure that the drug had been put
> up for me. It hadn't. Turns out that not only does the Dr. need to get
> an approval, the pharmacy does too and they didn't get it. Many phone
> calls are made to many people while I sat comfortably being medicated.
> It all works out in the end. I get the pills and instructions to start
> taking them whenever I think I need to. I just LOVE having that
> responsibility - not! Further discussion results in her telling me to
> start taking them on the second Monday of our trip. So far, so good. I
> will do this and will see her on the Monday after we return.
>
> The first week of vacation went well. We had deliberately avoided
> planning too many activities. This one was for rest, relaxation and
> visiting a few friends the we only get to see very rarely (like our Pat
> in VA :-) We had a very nice lunch and chat one day.). On Tuesday
> of the second week Jean caught a pretty bad cold. She did her best to
> stay away from me so I wouldn't get it but by Thursday I had it too.
> Friday was a "last chance to do whatever we missed" day as well as a
> "pack up" evening in preparation for a Saturday morning departure for
> home. I managed to get through that day but was very tired and had
> almost no appetite :-( The ride home (10 hours) was tiring and I was
> feeling worse with every mile. Ray does all the driving but just
> sitting there was wearing me out. At mid-day I decided to call my
> doctor and ask if this could be related to or complicated by the Tarceva
> that I had been taking for 5 days at this point. Of course, it was
> Saturday and she was not on call. The on call doctor didn't think that
> the Tarceva had anything to do with the cold but he approved skipping it
> for a few days. By the time we were nearing home, I decided that I
> wanted to skip our traditional stop for dinner before getting to the
> house. I just wanted to go to bed. I did go to bed but continued to
> feel really bad. I called the doctor again. This time he recommended
> the ER, which Ray had pretty much decided we needed to do anyway. This
> was a novel experience for me. I could find my way around Emerson's ER
> with a blindfold on after taking others there so many times but this was
> my first time as a patient! It isn't really much different :-) Three
> hours, two nebulizer treatments, a chest xray and a cursory exam later,
> I was sent home with a cough syrup prescription and a Vicodin tablet to
> get me through until Monday - visit with Dr. D.
>
> Monday's (Oct. 5th) appointment was meant to be an Avastin infusion and
> a check up to see how I was handling the Tarceva. Of course, I had a
> lot more to talk about. Not only was I suffering the cold but I was
> dehydrated as well. The Tarceva is, so far, a non issue. It is
> supposed to produce a facial rash after a few weeks but has not yet done
> so. Its major side effect for me up to this point is fatigue. I'm
> hoping that problem will resolve or reduce after all the extraneous
> medications prescribed for the ^#$^% cold, which morphed into pneumonia,
> are purged from my body. My dresser looks like a CVS annex. Avastin
> raises blood pressure and cannot be given if one's pressure is already
> at the "high" level. The inhaler that was prescribed for the pneumonia
> symptoms raises blood pressure. I can't even begin to guess what the
> other stuff does. Anyway, my pressure was too hight to get the
> scheduled Avastin on that Monday so I was asked to come back on
> Wednesday to try again. I did get a fluid infusion for the
> dehydration. Same story last Wednesday - no Avastin but did get fluids
> and was asked to come back in a week - Thursday of this week - to try
> again. Pressure is still high and still no Avastin - no fluids this
> time either though :-) I'll go back next Thursday to try again. My
> arms are looking like purple pin cushions :-(
>
> So, that is where I stand at the moment. I have no idea how my cancer
> is doing because of all the "noise" around it for the past several
> weeks. I do hope that the BP issue resolves because I very much want to
> have both drugs working for me. Right now it is pretty much just
> Tarceva because the Avastin should be purged by this time. I am told
> that it takes a couple of months for any discernible effects of Tarceva
> to appear so there is no benefit to having a CT scan for a while.
> Whatever! Except for the fatigue I am feeling pretty good. I have been
> on house arrest for two weeks but will probably go into my office next
> week if I wake up. We'll see.
>
> Thank you for your continued support. I can feel it every day!
>
> Rita
> ----------
> Rita L. in MA <One eyed> Mutant Ninja Quilter :-)
>