Dear everyone.
I am just hoping for some words of encouragement or advice! I have recently been diagnosed with her2pos ER/PR+ breast cancer which has spread to my left femur. Today, I went to meet the chemo nurse and we chatted about my forthcoming treatment. I thought I was having 18 weeks of Taxol with herceptin every 3 weeks. To this she replied that for people like me that I would normally be on chemotherapy for as long as I can tolerate it and the plan was to give it initially for 18 weeks. Then when that one wears out I would have to go on to another one. That I would only have chemo holidays. I had mentally prepared myself to have the herceptin every 3 weeks but the thought of chemo ‘forever’ is quite terrifying. The thought of being bald for years too is so sad. Was I naive to think that the taxol could get me to NED for a while at least. I thought that there may be breaks of years between the chemos!
Just trying to comprehend this potential new reality for me. My consultant had said I could have surgery after the 18 weeks if I wanted it.
Many thanks in anticipation of any advice!
PumpkinSue
Sue, I’m so sorry you find yourself on this side of the boards with us, but you’ll find lots of support and information here from others who are in the same boat.
Your treatment plan now and in the future will depend very much on how you respond to each drug. If the Taxol is working and you’re coping well with the SEs, you and your onc may decide you want to stay on it longer to knock the cancer back as far as possible. But if it isn’t working for you, you’ll change to a different drug. Or if you get an amazing result from it after the planned 18 rounds, you may switch to a gentler maintenance drug. I know of women who have been in each of these three scenarios.
As your cancer is hormone positive, you might be able to switch to one of the hormone therapies and there are tablet form chemos too. Many people get great results for extended periods while maintaining a good quality of life with these drugs.
As you have secondaries, you will probably always be on some kind of treatment. But some people do have complete breaks from treatment if they’re doing well, even if they are sometimes only for a short while - I think that actually, most of us feel happier when we are in some kind of treatment as it feels better for us to be doing something. And the “good” news is that there are lots of treatment options available for you, as you’re receptor positive for both HER-2 and ER/PR.
I hope this helps a bit. Keep reading and keep posting, so that you can gather as much information as you can cope with. And remember that chemo nurses know lots about chemo, but not necessarily about the whole picture… Look after yourself.
Hi Sue, Angelfalls has explained treatment life really well, I would only add that I have only ever had a couple of months with no treatment at all and I’m usually happier when I’m on a treatment be it chemo or hormonal. The chemo nurse has no idea of how long a treatment will work for you, we are all different in our responses to treatment. I had over 4 years with Capecitabine when the average time for a patient with this chemo is, I believe, 18 months. I’ve had years of stability, a good quality of life on both hormonal and chemo treatments. Take Care. x
Hi Sue
I had the same treatment as you and 3 and half years before I needed to switch to Xeloda and lapatinib the I had another year before needing to switch Xeloda (tablet chemo) for as long as it works. Some people do years on Herceptin alone.
Hope this info helps
Sue
And with capecitabine, your hair regrows - I’ve often had comments from people surprised that I have my natural hair (it is a bit thinner but this doesn’t show unless you look closely at my hair from behind).
Even for those of us who aren’t Herceptin girls, there are many other non-chemo treatments being developed. Some are becoming standard treatment (everolimus + exemestane, I think, but I’ve not had this combo), others are available if you sign up for a clinical trial.
But most important is if you can have some genetic tests, which many hospitals now offer - you give permission for your stored tumour tissue to be tested, and probably a blood sample too.
If these genetic tests show that you have a particular mutation, and there is a new (non-chemo) drug being developed that targets that mutation, you might be offered that drug with very good chance of successful treatment.
I do hope this helps and encourages someone. Chemo is no joyride, and a time will come when I will say “enough is enough” - but for the moment I am grateful for today and keeping some sanity if I don’t try to look too far ahead. Even having chemo in summer can be pleasant, we can stay cool in the shade and enjoy the flowers, trees etc. rather than having to travel through the snow and ice for our treatment as happened to me when I had my last conventional chemo in 2010-2011.