4th October 2006
Hello everyone,
To those of you new to the board my mom has had stage IV NSCLC since July 2004 ( actually she had her first pleural effussion in June 2004 but the CT was not done until July). She had liver mets from the start and is currently on her 4th line treatment having done Carboplatin/Taxol, Iressa for 1 month then changed to Tarceva as it was just approved( she responded very well to it for 7 months and has had no actual tumor in her lung since the tarceva. It did work on the liver mets at first but then they started to progress, so next we did Alimta and when it quit working,Taxotere and Gemzar which she is still on. This last combo has held the liver mets stable since Feb. 2006, Mom gets a CT on Friday but I will not be surprized to see progression as none of the other chemos have worked this long.
Even if she is stable I think she has decided it is time to call it quits as this chemo has left her totally exhausted and eating very little and now she is having severe jaw pain. The dentist finds no reason for the pain. A few weeks ago she was feeling bloated but that seems to have passed but non the less she is just tired of feeling like crap all the time. If the cancer does not kill her the chemo is about too! Last night she was feeling real bad and said she has had enough and wants to call it quits as she does not want to live like this.
She was to get chemo today but it was cancelled as her platlets are too low (again). She will have the next week off too and by then the CT results should be known . If there is progression the doctor has said there is nothing more he can offer her and if there is not progression she will tell him no more at least that is what she is saying now.
I think she is comfortable with the decision and while I support her decision I will say it is not easy for me as she has been such a fighter that to see her give up is difficult even thou I do understand. It is difficult to see her this way which makes me even more in awe of some of you like Jan , Kim and Renea who have had to watch their husbands deal with severe pain for so long. How do you ladies do it?
An interesting thing is last week when she had her chemo her jaw felt better and last night she took her steroids thinking she was having chemo and she woke up with no jaw pain and looks and feels so much better, all from that steroid high. We called the oncologist and asked if she could do a week or two or the steroids and they said no they will give her pain meds instead as steroids can supress the immune system. That is true but I would worry about that more with long term use. To me giving pain meds is putting a bandage on it while the steroids could do away with it if it is due to inflammation.But I am not the doctor am I? I hope if she stops her chemo for good he will the allow the steroids so she will at least feel better before the cancer gets real bad rather then feeling drugged out from pain pills.
I guess we have reached the day I have dreaded since day 1. I am so very thankful that the past 2 years have been rather good and she has gotten to enjoy much of the time thanks to the Tarceva. But to say I am not upset would be a a lie as I find myself crying alot and when she made her little announcement last night it did tear a hole in my heart as her death will create a huge void .Despite my belief that she will just be continuing on her journey and that death is just a part of life as is birth It still hurts alot. I guess what I prayfor now is a peaceful way out for her.
That is all for now.My prayers continue for the rest of you on this journey. God Bless each one of you. JanMarie
To those of you new to the board my mom has had stage IV NSCLC since July 2004 ( actually she had her first pleural effussion in June 2004 but the CT was not done until July). She had liver mets from the start and is currently on her 4th line treatment having done Carboplatin/Taxol, Iressa for 1 month then changed to Tarceva as it was just approved( she responded very well to it for 7 months and has had no actual tumor in her lung since the tarceva. It did work on the liver mets at first but then they started to progress, so next we did Alimta and when it quit working,Taxotere and Gemzar which she is still on. This last combo has held the liver mets stable since Feb. 2006, Mom gets a CT on Friday but I will not be surprized to see progression as none of the other chemos have worked this long.
Even if she is stable I think she has decided it is time to call it quits as this chemo has left her totally exhausted and eating very little and now she is having severe jaw pain. The dentist finds no reason for the pain. A few weeks ago she was feeling bloated but that seems to have passed but non the less she is just tired of feeling like crap all the time. If the cancer does not kill her the chemo is about too! Last night she was feeling real bad and said she has had enough and wants to call it quits as she does not want to live like this.
She was to get chemo today but it was cancelled as her platlets are too low (again). She will have the next week off too and by then the CT results should be known . If there is progression the doctor has said there is nothing more he can offer her and if there is not progression she will tell him no more at least that is what she is saying now.
I think she is comfortable with the decision and while I support her decision I will say it is not easy for me as she has been such a fighter that to see her give up is difficult even thou I do understand. It is difficult to see her this way which makes me even more in awe of some of you like Jan , Kim and Renea who have had to watch their husbands deal with severe pain for so long. How do you ladies do it?
An interesting thing is last week when she had her chemo her jaw felt better and last night she took her steroids thinking she was having chemo and she woke up with no jaw pain and looks and feels so much better, all from that steroid high. We called the oncologist and asked if she could do a week or two or the steroids and they said no they will give her pain meds instead as steroids can supress the immune system. That is true but I would worry about that more with long term use. To me giving pain meds is putting a bandage on it while the steroids could do away with it if it is due to inflammation.But I am not the doctor am I? I hope if she stops her chemo for good he will the allow the steroids so she will at least feel better before the cancer gets real bad rather then feeling drugged out from pain pills.
I guess we have reached the day I have dreaded since day 1. I am so very thankful that the past 2 years have been rather good and she has gotten to enjoy much of the time thanks to the Tarceva. But to say I am not upset would be a a lie as I find myself crying alot and when she made her little announcement last night it did tear a hole in my heart as her death will create a huge void .Despite my belief that she will just be continuing on her journey and that death is just a part of life as is birth It still hurts alot. I guess what I prayfor now is a peaceful way out for her.
That is all for now.My prayers continue for the rest of you on this journey. God Bless each one of you. JanMarie