OT My, how time flies! - Page 2

not a necessity. When you are better, they'll be a luxury >g<

>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 :-)