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 Mutant Ninja Quilter :-)