Thought I would give an update. Had to stop Femara. Lasted about 7 weeks. Bones, muscles and joints are so sore, cant lift my arms over my head. Pain Dr said it won't get better and it will take about a month for se to go away when they are this bad. Onco says should go away in 5-6 days, I tend to believe the pain doctor.
Right leg is still 2x the size of left, from rad tattoo on calf to hip. Both say lymphedema and suggest a stocking during the day, cant even reach feet to put on socks. Will see what the le specialist says and will have to have someone come to put it on in the am.
Was on Cipro for IUD, that threw off the coumadin levels, bouncing between 1.5 and 4.1, now testing 2x a week. Says there is no real science will need to keep changing dosage until we get it back to 2 -2.5. He says have to really watch for internal bleeding and blood clots, said it will help with clots but no guarantee that I won't get more as blood clots can come from the cancer, anti-hormonal meds, as well as inactivity. Was told to exercise, but keep off my feet because of the swelling, so I exercise laying in bed.
Started Oxygen. Can't tell if it has made a difference. I am too worn out from fighting the pain. Trying so hard to be active, but honestly the only time I even feel good is when I am sleeping. I wake up happy, then try to get up and it all starts again. I keep trying to find community activities that may spark enough interest that makes me want to get up. I am working so hard trying to stay up! But honestly feel I am losing that battle too.
He tried to get me in a Acupuncture trial, but I do not qualify because I am stage IV. He said research has come so far, I said not for stage iv! I explained the numbers, how less than 3% of the monies is going to stage iv research. He was surprised so I gave him some sites. ie. Metavivor.com He does research and comes from NIH. I asked him if he would help me find a trial. Currently there are none at this cancer hospital/center for stage iv. I agree overall there is a lot of recognition and trials for stage 1 - 3, but not so much for stage iv. This past year was a little higher, because money was committed prior to grants being cut. He cant find anything that I qualify for.