I’ve had a mixed start to the year. I’ve just recovered from covid. Luckily it was a mild case helped by the fact that I’m triple vaxed, but I still came off Ibrance for the duration of my quarantine (10 days here in Cyprus).
I was not expecting much change from my first scan since starting treatments, especially since both my first and second primary medications have been a bit stop and start.
I’ve only managed around 3 months on Kisqali before having to break all meds for over a month to try to allow my liver enzyme to normalise….and my secondary replacement (Ibrance) was then also interrupted when I had covid…and I’ve only completed two cycles of it now.
My CT scan shows a 40% reduction in my primary tumour and my bone density for all other mets has greatly improved.
I haven’t had a discussion with my oncologist yet. So far I’ve just been sent the report, but it look good I think.
Just thought I’d share some good news.
Best wishes from Zoe
xxx
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Thanks! Yes I’m hugely relieved. The CT scan was also easier than I remembered. My previous scans all happened on the day I was told that I was stage 4. I was in shock and the day is still a bit of a blur as I had a CT and also a full body bone scan with some sort of radioactive tracer that took hours to be absorbed while I had to drink litres of water…. However this time everything was super simple and quick. All finished in 20 mins.
There was some sort of tracer used half way through the scan, but there was only a brief pause of 5 minutes or so before the scan started again.It was only a half body, from head to hips …as so far that’s as low as my mets go, with no spread to organs. 20 mins , approx, was the whole procedure…including getting dressed into robe and then changed again afterwards. I remember having the total bone scan that you mention previously on my stage 4 diagnosis day, back in June last year. That was definitely much longer and more radioactive as I was told not to visit any very young children / babies for the next 24/48hrs.
My mets range from scull, spine, shoulders, breast bone, ribs and pelvis.
Thanks for your responses Sandra, you really are a brilliant support and a well of knowledge! I really appreciate the time and care that you put into this group.
Well done, we don't get a report here in UK until our oncologist appointment and that is followed by a letter to the GP which we are copied into. It doesn't ever have huge detail. I have to as for my neutrophil count and CA markers if I want to know. I hope your progress continues.xx
Thank you Beryl.The information at my centre seems to be made available. I get my monthly blood test results emailed as well as the tumour markers. My Greek is terrible though and my husband has to translate it all. I have monthly meetings with the oncologist too and we then discuss progress etc while I also have my Zometa infusion on the same day and also collect the next months supply of meds.
That all sounds very good. I've had mostly phone appointments since diagnosed in 2020. I had a couple of face to face in the autumn when they were discussing adding in zolondronic acid. My infusion is done at a different hospital so no oncologist around then! I actually go to four hospitals if I include blood tests, as depending on timescale some take longer to get them through and it's better to travel further. But I presume yours is through a private system? Now Greek sounds a bit challenging! X
Greek is a difficult language!! But I really have no excuses for not having picked it up after all these years!! It’s definitely been a challenge to keep health systems up and running through this drawn out pandemic! I’ve got friends in Uk who have had only online contact with doctors recently too. I go between two centres. The one in my home town is used for taking blood samples which are then sent to the capital oncology centre in Nicosia for processing. I meet with my oncologist in the Nicosia centre too.
They’ve managed to keep the doors open right through the pandemic…even when there were national lock downs. There is a no “plus one”policy though, which means my husband can’t come inside with me. Luckily I can get all the treatments and appointments through the local NHS.
Wishing you all the best with your treatments, hopefully the whole system will return to normality sometime soon and you will get more face to face appointments.
I will add my congratulations to those of others on your good news. Despite your treatment interruptions, it seems that the drugs you've taken have had a much desired effect, both on your breast tumor and your bone mets.
I believed you mentioned in your first post that you are taking Zometa, often prescribed to treat bone breakdown due to cancer. Although being given regular bone density tests is not the usual procedure in Canada where I live, these tests are, apparently, clearly recommended for breast cancer patients of all ages (not just postmenopausal patients susceptible to osteoporosis). According to breastcancer.org:
" No matter your age, if you've been diagnosed with breast cancer, your doctor will probably recommend a baseline DEXA scan before you start treatment and then regular DEXA scans as you move through treatment. This will allow you to make sure your bones are staying strong and take protective measures if you do start to lose some bone."
According to the original study,
Cancer Invest. 2002;20 Suppl 2:45-54. doi: 10.1081/cnv-120014886. PMID: 12442349.
"Zometa (zoledronic acid), decreases skeletal complications in both osteolytic and osteoblastic lesions", even though biophosphates were originally only proscribed for osteolytic lesions. This makes me rethink my initial declining of Zometa (my bone mets have all been described as osteoblastic (i.e. overgrowths).
It seems that your oncologist is taking good care of you. I think you mentioned initially that you are also taking good care of you through exercise, diet, etc. Good to know that it all seems to be paying dividends.
Thank you for your congratulations Cindy. I personally can say, I find Zometa a big benefit in stopping the achiness I previously had due to the position of some of my mets…. Which in turn then helps to keep me more mobile and improve general well-being.
That is wonderful news! Sounds like your treatments are working. Hope they continue to be successful for you. I also recently got over Covid and it was not too bad either, thanks to vaccines and booster. I stayed off of my Ibrance for about an extra week as I got it when I was in my off week. My recent bloodwork was great, hopeful my scan the end of February will be good, too. Sending hugs!
Thank you. Glad you also had mild Covid. We can add that to our list of achievements! Wishing you well for your up coming scan. The blood work results are a positive indication!
Awesome news! Thanks for sharing -It’s always good to hear great news! May you continue to have success with your treatment and may it continue on being manageable. Happy dance time 💃
Thanks again.I’m not a religious person, sorry no prayers coming your way from me….but I wish you the best of luck with your up coming scans. I hope you can continue with your current treatments also. Wow 45 months of Ibrance! Well done! I’m impressed.
I wondered about the necessity of changing into robes too. I was careful to not wear anything with metal parts that might show up and confuse images…but was told I should still change.
Since the current disposable garments are so uncomfortable and ill fitting, I brought my own cotton version that I got on Amazon. I find the scratchy synthetic fabric of the clinics gowns make me over heat as I still have some hot flushes from menopausal symptoms. The thing that I got on Amazon is not actually a hospital gown it’s more of a kaftan, but it’s a plain smooth cotton fabric with long sleeves and a longer hem so it’s not too short for my 177cm height. I feel a little more in control too, in that I’m wearing my own thing during the procedure.
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