My 18th year since my diagnosis of secondary BC and 26 years since my primary diagnosis (Sept 94) and still going strong.
Covid19 was a blessing for me - yes really, it is an ill wind that doesn’t blow someone some good! I will explain.
I was due to start treatment for the Chronic Lymphocytic Leukaemia last year but, as the treatment included a possible round of chemotherapy, I wasn’t keen. Having had 3 rounds of chemotherapy for breast cancer, I didn’t want another one for CLL if I could help it but the first line treatment didn’t include the new ‘wonder drug’ Acalabrutinib. Thanks to Covid19 and the drive to keep patients out of hospital, Acalabrutinib was approved as a first line treatment and I started in the summer last year. The results have been amazing and my lymphocytes have reduced from 286 to 3 (they aren’t supposed to be higher than 4) so amazing results.
In 2003 I was in real trouble, my FEC treatment had failed after 4 months, I had several large tumours in my liver and it was speckled throughout, meaning that removing part of my liver was not an option. I was placed on a regime of Taxotere and Herceptin and have never looked back.
Why am I telling you all this? Well Herceptin (I am still on it and almost up to my 300th 3 weekly infusion!!) was only given approval by NICE in 2002 so I got that treatment just in time and, yet again, (thanks to Covid19) I have been placed on a drug that has dramatically improved my quality of life and survival rate.
I have had my first Covid vaccination and, after many many months of shielding, I am looking forward to a summer of freedom.
We all have a lot to thank the NHS for but I think I owe them more than most. When I needed them most a new, groundbreaking drug was found for me - twice! I have also benefited from the amazing work done to create the Covid vaccine (that makes 3 groundbreaking drugs!) and feel very grateful for all I have privileged and lucky enough to receive.
I wish you all strength and luck (yes luck to be in the right place at the right time like me) and a Covid free year ahead.
Health and happiness
Thank you so much for posting. It is great to hear you have done 18 years. I am currently 8 years post SBC diagnosis and sometimes think I must be running on borrowed time. I am glad you’ve accessed the treatments you’ve needed and wish you all the best for the future.
That is so encouraging!!! 18 years… I’m sure it hasn’t been all plain sailing during that time, but it just goes to show that it can be treated as a chronic condition. Amazing!! What type of breast cancer do you ladies have?
I know everyone is different and reacts differently to treatment, so it isn’t advisable to compare to each other too much, but my mum has sbc quite extensively in her bones and was diagnosed Sept 2020. It is estrogen positive and lobular… she has her scans next month and my anxiety is starting up!! The scans come round too quickly!!
Well done and what a marvellous post to read, especially for a newbie like me (diagnosed dec 20) and today frightened I won’t see another Mother’s Day!
I totally agree NHS is marvellous without it I doubt I would have survived my primary diagnosis in June 2017 stage 3 HER2 Er+ . Unfortunately now back in my hip still ER+ but now HER2- on fulverstrant and about to start palbocicolb after I have hip replacement surgery in 2 weeks to remove as much of mets as they can. My oncologist tells me ladies now surviving into double figures but not sure if I believed it.
It’s so wonderful to hear your story. I have Sbc in two of my vertebrae and have been taking Palbociclib for the last four years, but as Coolgirl says you do wonder how much longer this line of treatment will continue working for. You give me hope for the future! I hope you have a brilliant COVID free summer out there doing all the things we’ve missed over the last year. Sending lots of hugs
Good to hear from you Blondie!
A year ago you gave me and many newbies hope, and I’ve been looking forward to your 18th year post knowing it was due around this time… and you have not disappointed me ?
When you get given a diagnosis of no cure, and then get to read your journey it gives the hope that we can ‘live with’ IT. Thank you
it was great to hear that you are doing so well on herceptin & your new treatment for Chronic Lymphocytic Leukaemia. I have also been on herceptin since June 2004 for liver secondaries. So nearly 18 years. Medical research & NHS is amazing & I am so grateful as well.
I wondered if you experience any side effects of herceptin? I have a rare genetic immune deficiency & on treatment for that so it is challenging to know what are side effects & what are general aches & pain.
Take care & so glad all treatments are going well.
Lovely to hear your update Blondie. Hope the CLL treatment continues well.
Your story kept me going in my early years after stage 4 diagnosis. I’m now over 9 years down the line, most recently having had sterotactic rad for a brain met.