I saw my onc today. I felt slightly reassured about my situation, but slightly uncertain as well. Would like to hear your opinions on some of the comments by my onc. Would also like to hear your experiences/tips on getting over similar bumps.
I am currently on tamoxifen + Zometa, wasn’t offered op and was told it’s very unlikely to be offered op in the future. I’ve recently noticed some changes so worried that tamoxifen is not working, hence the app today. He wasn’t sure whether the changes are BC (not very reassuring), but decided it wasn’t necessary for further investigation. He said he wouldn’t ring the alarm bells yet, but would give tamoxifen a bit more time (started it since Dec, 09) because tamoxifen can cause a bit of fluctuations in the beginning (is this true?). He also agreed to keep a closer eye on it, so my regular app with him has changed from every 6 weeks to every 4 weeks. (This is very reassuring because if things do go wrong, there’s a good chance it’s going to be caught early.) I am also reassured by him that even if tamoxifen does fail, it’s not the end of the world because there are still lots of treatments out there.
I had a little moan with my onc today because when I was on chemo, I had a very quick response and I could feel the improvement every week (if not every day). But tamoxifen seems to be doing nothing. (It must be doing something, at least it’s keeping it under control). I feel that I’m living from one app to the next and wanting to see more progress (at the moment, it seems to have got stuck if you know what I mean!) He felt a bit sorry for me but encouraged me to enjoy life a bit more rather than focus on cancer. Easier said than done!!! Of course I know a “normal” life is good for me.
I find the uncertainty of secondaries very difficult to adjust to. I want to be more active again so that I will have less time to worry. But if I plan too much and then realize that I can’t do as much as I used to do, I get frustrated and it just reminds me that I’m not as normal as I used to be. More trials and errors, hopefully I can find the right balance again.
Oh dear! Sorry didn’t mean it to be this long. Thanks for reading.
Hi…I don’t know if this helps m1yu but I was diagnosed stage 4 from the very beginning in 2003. Had breast cancer and bone mets, these were diagnosed after my hip spontaneously fractured. I’ve also never had a mastectomy. My first treatment was Tamoxifen. I have tumour markers taken, now every 3 weeks but then it was every 4 weeks. The CA15-3 markers. Info here, labtestsonline.org.uk/understanding/analytes/ca15_3/glance.html
(sorry if you know this already!) My markers are a really reliable indication of how well I’m responding to my treatment. Tamoxifen worked well for me for approx 15-18 months. But it took around 3 months after starting treatment to notice a significant change in my tumour markers. After 3 months they started to steadily decline. After Tamoxifen started to be less effective I was changed to Arimidex which worked well for nearly 3 years. My next hormonal, Aromasin, didn’t work at all and I was started on my first chemo, Xeloda (Capecitabine.) I’ve been on Xeloda for 2 years now, continuously, for me it’s worked really well, I’ve not felt ill, not had a day in bed with this chemo.
I always used to worry about when, what would happen when a treatment failed. I’m lucky to have had the luxury of time to be able to feel a little more relaxed about the situation. I try not to worry about what will happen next week, next month. When some hurdle, setback happens I’ll deal with it then…as much as that is possible. I feel lucky to have stayed so well and I’ve now had a long time to get my head round living with the constant uncertainty. Please be reassured there are many treatments left in your store cupboard. A couple of treatments have been introduced since my diagnosis.
It’s so hard to get used to living with secondaries.
I had many years of stability, no activity with hormonals. I hope you too have a long time with hormonals before having to have anymore chemo.
Not everyone wants to be monitored so often, so closely but I have my markers taken every 3 weeks and also see the same Oncology doc from my Onc’s team every 3 weeks. This suits me…in fact I think this monitoring has helped me stay well. It sounds good, to me, that you will also be closely monitored. I try and enjoy the days inbetween but it takes a bit of getting used to. You will find your own unique way of living life with secondaries…we are all different in our approach. Please private message me anytime. Take Care.
Love Belinda…x.x.x
It’s interesting you mentioned CA15-3, mine was slightly high before I started chemo, and then it went back to normal after my 2nd chemo and it has stayed normal every since. I didn’t have a very large tumor compare to some, but unfortunately, it made an early get away.
My thinking behind chemo is that it’s going to get rid of the cancer cells quickly and I can make a quick recovery. But then, having secondaries means that I can never get rid of it completely and I can never recover completely. I guess I just have to learn to live with it.
Hi again…and sorry about the long rambling reply by the way! I looked on hormonals as a way of enjoying some time before needing the big guns. You still have all the chemo options ready for when you need them…hopefully years from now. If your markers remain in the normal range those little pills are doing a great and really effective job. :-)…xx
I’ve always been told that it can take 2 - 3 months before you can be sure whether a hormonal treatment is working or not. I went back onto tamoxifen at the beginning of Jan, rather than trying another chemo (long story!!) and see the onc tomorrow for my latest blood test results which was the soonest he felt appropriate to evaluate whether it was working or not. My CA15-3 marker is quite elevated as well - was nearly 400 in late Dec. I’m not expecting it to have gone down on tamoxifen tomorrow but am hoping that it won’t have gone up again by so much!
My primary dx was in 2002 and then I was diagnosed with liver mets in 2007. Unfortunately unlike Belinda, I’ve not had any really long periods of stability which does make it hard at times but at the same time, it does make you really appreciate the times when things are more settled. And I’ve been lucky in the fact that I’ve felt pretty well most of the time, despite being on chemos and having various other interventions. As Belinda says, we do find a way somehow of living life with secondaries but each person has to find their own way really.
If tamoxifen and Zometa are holding things stable for you though, that is a really good thing even if the tumours are not actually shrinking. I think that “stability” is good can take some getting used to along with the idea that you will not be able to eradicate the cancer completely. So my hope for you (if I may) is that tamoxifen and Zometa continue to hold things stable and stop the cancer progressing for a very long time. And when it does progress, there will be many treatments (both hormonal and chemo)for you to have.
Hi Kay, I hope you have a good appointment tomorrow. I hope you find tamoxifen is holding everything stable. Are other hormonals an option for the future? Megace or Faslodex? Take Care, Good Luck…xx