The joy of Oral chemo
It's been a while... Seeing Celeste's udate I though I would add my own and share some positive news in what at times is an overwhelmingly shitty "journey".
I too had scan results a couple of weeks ago. I was feeling pretty positive as my skin met had responded so dramatically to the xeloda but as I have always been asymptomatic in my lungs I didn't know what to expect. Well, the GREAT news is that I have had a very impressive response. After 2 1/2 cycles of Xeloda and Tykerb I have seen a substantial reduction in most of my lung mets, my axilla node is nowhere to be found and my skin met is a mere pale pinkness on my breast. I asked my onc if any mets were gone and she said many, many were gone and the radiologist was gobsmacked and wondered what wonder drug I was on... Just Xeloda and Tykerb - I responded to something routine! I have never seen a met disappear - I've only had stable or progression so this is a good result.
My joy is tempered with reality that this may stop being effective but for a few days I relished the fact that the cancer finally responded and retreated! We are hoping I may get 18months-2 years out of this combination.
I have reduced dosage a little as the fatigue was incredible and I had GI issues and then started to get "the" rash. The new dosage seems to be fine and completely tolerable. My skin is still crap - dry as a desert but the hand foot so far isn't too bad and the bottom side of things only flares every now and again and if I avoid some foods is negligible.
The other Joy is that the treatment is all oral - no hospitals! Woohoo! No sick people, no depressing blue/grey chairs, no disinfectent smells, no time wasted sitting in a chair indoor when the sun is shining outside! All Good.
So, what does this mean? I don't know, the oncs don't seem to know most of the time either - such is the hit and miss nautre of oncology. If A doesn't work let's try B, If A and B don't work maybe C will - oh look C is working! Maybe if we add C to A and B it will be even better and so on and on....
I'll share a few other thoughts as I want the stories of women with Advanced BC to be out there and not hidden in secret groups for fear of upsetting the "early" girls. We all have to be in this together and my story is as valid as anyone else's early or not. If you are uncomfortable reading my story about advanced breast cancer and it's unique challenges then please, feel free not to read.
I had an experience in February where another BC mum I met locally emailed me to say she had just found out she had secondaries (she had just completed treatment for EBC at the end of last year) - she died 9 days later - this completely knocked me for 6! We never had this on our radar. We know that this disease is likely to end my life but I have been very focused on managing it as a chronic illness for the long term. My friend's death, leaving 2 young children sent me into a spin. How likely was this scenario for me? I asked my oncologist for a prognosis (I've never asked and she's never offered) - thankfully she wouldn't give me one but did promise to tell me when she felt things were turning for the worse and it was likely that I had less than 12 months. I am so fortunate to have the oncologist that I have, to have someone willing to work with me, someone talks about what we can do next, what the new developments are rather than doom and gloom that others get. I went to my new friend's funeral, I cried a load of tears, I laughed, sang and thought about my own funeral. I answered my children's questions about her death, I cried with them and wiped tears with them when they worried about me dying. I learned more about being alive and living right now and shared that with my children. Someone known for such a short time but who taught me valuable lessons.
The other news is I have been diagnosed with osteoporosis. Seems early menopause and family /genetic factors have seen that I now have osteoporosis in my spine, osteopenia in my hip and likely disease elsewhere. So now we have to work out how to treat it. Luckily again my oncologist is anticipating that I will be here for a while yet and figures it is worth treating me. She also sent me to see my breast surgeon to check my other breast - he was a little surprised and said that he guessed she figured I wasn't going anywhere yet as most oncologists once you were ABC don't worry about things like cancer in the other breast. That's one of the other things about having ABC - many consider you "terminal" and by definition we are, but so is everyone, we all die of something. Given Stage 4 status the little things to some don't matter anymore - i've never worried much about my manky boob but noone even discusses it anymore - when it was EBC all the talk was of reconstruction and moving on. Now, no one care that I have a ridiculous looking breast, that at 39 I am in menopause so intimacy and the reduced ability to enjoy it has become an issue - no one cares - you are alive at the moment - be thankful! I am, I would do just about anything to be here for my kids but I do understand how people get tired and say "enough". I am nowhere near that yet but I have had times when the side effects have seen me wonder whether I can go on like this indefinitely for my family ? The feelings are fleeting thankfully and the side effects under control but I get it now. There is never an end in sight to treatment - never an end in sight to the chemo, the side effects. I am only now realising that this is my life from now on for however long it may me. I think I always Hoped I would be one of the 2-4% who achieve a long term remission - I now realise that if I manage to stay alive for more than 3 years that i will have achieved something significant. I realised the other day that I may never feel vital and young again. I know this happens to all of us but it has been thrust upon me. I still have friends having babies and I am menopausal and can't even contemplate seeing my children finish school sometimes. I feel robbed.
But for all of this - I am not on a downer, it's just that this disease is so present, it infliltrates every aspect of my life, my relationships, my family, my finances, my hobbies - I cannot think of an area in my life that is free of cancer.
So for now I am thankful for regression of the cancer, for the freedom of oral chemo, for the happy reality that I am still asymptomatic, for the ongoing efforts of researchers, for waking up this morning and riding my bike to the park with my son in the sunshine. It is good to be alive.
A xx
