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Jul 20, 2012 01:08 AM, edited Jul 20, 2012 01:12 AM
Here it is very late and I am reading and trying to catch up. Needless to say with Oxy and some Ativan not doing to good.
First I was very lucky when I fell I did not break a bone - fully expected a hip or back fracture. I had some pretty large blue places on my arm and shoulder.
Ladies, I don't know what to think of the Abraxane. I now have 6 doses behind me. This is my week off. I start my last series on Monday along with the wonderful Zometa. Both times on my week of, by the end of the week my ankles are swollen that I can't see that I have ankles and am swollen to my knees. Left seems to be worse than the right. Then I start Abraxane again and it goes away. Strange, I think very strange - does anyone else have this?
Also, my pain level has really increased. Vicodin long gone. Was placed on one 12hour Oxy twice a day and then Oxycodone 2tabs. q6h. for breakthrough pain. Monday, we had to up it to two12hour Oxy. I told my oncologist that I thought if the chemo was working, shrinking the mets, that I would have less pain, not more and would not keep having more sore sports. He told me that was true BUT he didn't think I had been on Abraxane long enough- so do the next three cyles and we will scan.
I have been having some vision problems, being off balance, headaches, not feeling together in my head - not sure how else to describe it. He tested me 3 weeks ago and did notice some neurological issues but think he felt it was due to the spine and the extensive mets. This has gotten worse and he wanted to do a brain scan. Well, my husband had just told me something that had been going on with him for several week and that scared me so was more focused on him getting attention (he has had colon cancer). He checked out fine but honestly with all the pain and then worry about him, I emailed and ask him if I could postpone the brain MRI until we met again on the 23rd and we could re-evaluate. I can't decide if I get tired and I have off balance problems and then that makes me nauseated or I get nauseated and it causes me being of balance. The vision problems is not like all the zig zag patterns of a migraine aura - a bit different but vision still messed up and I get a very light headache and nausea. But coming home and reading about brain mets, it says that "my type" of BC is not one that normally goes to the brain.
I do ok with the Abraxane until that 3rd treatment - boy the mouth problems. Yes, I have the mouth wash and even the Duke's Mixture - just miserable with tongue feeling horribly burned and sore in the mouth for about 4 days before it starts to improve.
Not sure what I think of Abraxane - honestly with the increased pain I have had, it really makes me wonder if it is working. I guess only the scans will tell. Will start that series on Monday but really am interested if anyone else had the swelling/edema of the feet on the week off and the mouth sores shortly after the 3rd treatment. My pain is lots worse and has really affected my QOL
On a positive note, I had three lades that I met at BCO almost 7 years ago come visit for two days. One lady was here for two nights, picked one up at a meeting place yesterday and took her back to the airport today and then the third one lives in Va and came around 10:30 this morning and everyone left around 3:15. It was wonderful. I had met them all before. People look at you really strange wondering how on this earth you can form that kind of friendship over the internet, how much do you really know about them, etc. but we all just clicked and stay in touch daily. They "get it" mentally, physically and emotionally. No matter how much our family loves us - they don't understand the daily struggles.
Like all of you, you get up and live your day as best you can. Cleaning my house has certainly changed. It is spread out over a few days instead of doing it all in one. Fatigue on Abraxane for me has been tough but then chemo just seems to bring me down to size and hit me with fatigue.
Love to hear about the swelling and mouth sores. Since i am still so new at all of this, I don't know lots about the other drugs some are starting - something tells me I might.
My oncologist only says that this is a chronic disease and can be treated successfully for 10 years or more. I take my scans to my radiation oncologist and he is a family friend and when I say 3-4years he says he feels that is reasonable. My DD takes my scans and reports (she is an RN another state) and shows her doctors and they tell her 3-5 and talkes to her about the pain. No she didn't tell me, she was trying to help my husband understand what was coming. So, I do think they have "ideas" and I am ok that I know those things. I don't dwell on them, it is up to me to fight - just that so far since I was diagosed we don't seem to have the bone mets near stable or under control. I had widespread, extensive bone mets when discovered and it has only gotten worse. Looking for a good scan report in 3 weeks !
Late and I am tired from having my friends here - they weren't any trouble, house is to quiet without - just the level of energy that I seem to have lost. Haven't been on the site much at all - to much going on. Will try to check in more frequently but I feel inadequate in helping others - I seem to be asking for lots of help myself. 2 1/2 months and it will be a year since I learned I had metastatic disease.
Overlook spelling and typos - to tired to do a check. Blessings ladies, Brenda
Dx 8/18/2005, IDC, 3cm, Stage IV, Grade 2, 0/7 nodes, mets, ER+/PR+, HER2-