Hi folks
I apologise now for the long post but would really appreciate personal opinions / experiences of treatment with Capecitabine and Pacletaxil and would like to tell my story and why I am having problems deciding which would be best for me.
April 2014 – diagnosed with left sided lobular breast cancer. Mastectomy followed by chemo and probably radiotherapy was my treatment plan.
May 2014 – bone scan – no abnormalities detected
May 2014 – liver scans (US / CT / MRI) – two small spots on liver. Unable to say if cancer or not so mastectomy no longer an option and chemo now treatment of choice
June to Oct 2014 – 6 cycles of chemo ( FEC-D). Other than losing a lot of my hair (used cool cap) all of my brows and lashes, I was really lucky and didn’t really have any other side effects and was able to work through the treatment.
Oct 2014 – CT scan – no change in liver but shows cancer in my bones (spine, sternum, pelvis and left hip). I could feel a big reduction in the size of one of the breast lumps.
Nov 2014 - started Denosumab and Tamoxifen tablets
Nov 2014 – Bone scan – no abnormalities detected (have since been told if the cancer in bones is small enough spots, a bone scan will not pick it up). Informed that it would be CT scans which would keep a check on my liver and bones.
Feb 2015 – CT scan shows all stable. Informed that the two liver spots may not be cancer as they have never changed during or after chemo.
May 2015 – CT scan shows liver and bones are stable. Informed that the two liver spots were unlikely to be cancer as they have still not changed. I told Onc that I felt the larger breast lump had started to grow again. Told the scan shows breast lumps are not showing as growing.
Aug 2015 – CT scan shows stable. I told different Onc that I felt the larger breast lump had started to grow again. Told the scan shows breast lumps are stable but you know your body so we will get an US scan.
Aug 2015 – USS confirms breast lump is growing. Decide on a mastectomy with lat dorsi reconstruction despite being told by surgeon that this will not cure me or improve my diagnosis.
Sept 2015 – Had mastectomy and made a great recovery. Managed to go on holiday to Turkey 7 weeks later.
Jan 2016 – found a lump in my other breast. Doesn’t show on US scan so everything clear.
Feb 2016 – CT scan of bones and liver. Found another bigger lump in breast, not there 5 weeks before. Biopsy shows it is another lobular cancer. Unable to say if a new cancer or spread from other breast
Mch 2016 – CT scan result shows a new bigger spot in my liver. Shows bones are stable. I say that I feel the cancer is growing in bones as pelvis and left hip are getting sorer and I am having trouble sleeping at nights, but no, the scans say bones are fine.
Mch 2016 – MRI of liver. Confirms that there is cancer in my liver. Given a choice of treatments – change my Tamoxifen to another hormonal tablet, clinical trials or chemo, with the choice of IV Paclitaxel or Capecitabine tablets.
This is where my problems start. I have been getting conflicting info re the two treatments. My personal circumstances are that I am mid 40’s, single, with no children. I am working although assigned to a desk job now. I love my holidays and get away to my apartment in Turkey at least 4 times a year for 10 days to 3 weeks at a time. I live for my holidays as I am not lucky enough to have children.
Last week when I was told I needed treatment and I had narrowed it down to chemo, I had pretty much decided that I would have the IV chemo. I knew I would lose my hair again and that broke my heart as I am only now feeling confident about my appearance again. But I had decided that I would blast the cancer in all areas and could then move on and recover again. I felt that the tablets would be long term and would not allow me to holiday.
But the way my Onc spoke, I would be on the IV chemo for many weeks with a break and then be back on it. He described the Cape as being more flexible with a three months on / three months off cycle which would be more flexible and would allow me holidays and also to keep my hair. He said both would be as effective as the other.
I was elated as I felt I had a win / win situation – I could have my holidays and keep my hair. I just needed to decide whether to have a quick holiday before I started the tablets or start as soon as possible. This would allow me to go on holiday in September and may even alleviate the pain in my back sooner.
But today, I went to the Onc unit to get my Denosumab injection and had a chat with the nurse. She told me that the IV would be a set amount of treatments and would then stop. She said though, that it would normally be 18 weekly treatments (not the 12 that I thought after reading up on things here) and that a lot of women don’t manage to tolerate the 18 weeks in a row so that would prolong the treatment. She then went on to say that the tablets would be more flexible as after a few cycles, I could factor in a few weeks off to have my holidays. The problem for me though is that I am not a ‘one holiday a year’ person. So would the tablet regime allow me numerous holidays a year? And then the nurse told me that Cape makes you extremely sensitive to the sun and you are not able to sunbathe. That’s what I do all day when on holiday.
I was extremely upset as I feel that every time I make a decision about my treatment (I had already decided another mastectomy before being told that was not an option) I get the rug pulled from under me. I then spoke to another Dr who explained more to me. She says that there is more flexibility with Cape as we could factor breaks in but I am still not sure how many I could have. I want my holidays but don’t want to find that I am adapting my chosen treatment so much that it is not effective. She also said that it may be possible to travel while taking Cape. And she said that she would find out from the pharmacist how photo sensitive the Cape would make me (I tan easily and have a good tan just now).
I am hoping to have the relevant info soon so that I can make an informed decision as to what is best for me and will allow me a quality of life that I want.
So ladies (and apologies again for prattling on) your experiences and answers to the following questions would be much appreciated:
- With Capecitabine – can I travel abroad while taking it or would I need to be on a break? If on a break, how long would I need to be off it before safe to travel?
- How many breaks maximum is it safe to have if I had to come off it to travel?
- How sensitive to the sun does Cape make you?
- Would I be better off having the Paclitaxel and just get the treatment over and done with instead of having an ongoing treatment?
I just need to make a decision and quickly. Whilst all of this has been going on, I lost my lovely mum to cancer last June. Hers was breast and then she was diagnosed with a primary lung cancer. It has been a tough time for me trying to keep going and remain positive. My holidays are what keeps me motivated.
I hope someone can give me a pointer to help me make a decision
Thank you