Why not join the Living with metastatic private group? Access group via the link here.
Kisqali & Letrozole - thankful & fearful...
MargaretTurner
Member Posts: 14 ✭
Hi, I was diagnosed 7 months ago with metastatic breast cancer and am very thankful for Kisqali and Letrozole (which is working!) having been clear for many years after an original diagnosis of lobular breast cancer. Whilst I am very fortunate to be able to get on with life I do fear what happens once the medication stops working. Do others feel this way what are your coping mechanisms? How do we access information on newer better treatments even if not yet on the PBS or in trials? How can we access genomic testing in Australia that is affordable?
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Hi @MargaretTurner - so sorry to see you've joined our select little group here, after your earlier BC diagnosis xx. Lobular is the sneaky one - sometimes turning 'rogue' decades after the original diagnosis ... you may like to join the private metastatic group, where you can chat in 100% privacy with others with Mets. Jump on here & click join.
https://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer
That's great that your treatment is working well ... try not to get ahead of yourself .... your Onc team will be making sure you get the best treatment available, for the best results - tho it is also totally normal to wonder what happens once the meds stop working xx. Try not to dwell on it tho.
Lobular Breast Cancer Alliance is considered a reliable website & also has a dedicated Metastatic Lobular page, which is updated regularly and often mentions Clinical Trials.... they encourage ILC patients to participate in the trials - so it is important that your Onc knows this, so they can put your name forward, if this is what you would like to do. The more trials, the better chance of better treatments.
https://lobularbreastcancer.org/ilc-clinical-trials/Lobular Breast Cancer Alliance also has a dedicated Metastatic Lobular page, which is updated regularly ....
https://lobularbreastcancer.org/metastatic-ilc-information/
Every now & then we see overseas trials (not yet available in Aussie) and we ask 'WHY NOT HERE?' Any time new trials are available, it is important that your Onc be 'on top of it' and push for you to get onto them, if they suit your condition. We hope to have a dedicated 'Clinical Trials' area soon .... where everyone can see all the different trials in one spot ..... eg, there is a trial in UK & USA on a promising vaccine for Triple Negative BC patients .... but it has not 'started' in Australia yet ..... which is a shame.
If you are 'up to it' - other lobular members (me included) would be interested in what alerted you to the eventual Mets diagnosis, as it can show up in so many different areas - Was it specific back or hip pain, or maybe it was in another area? Were your concerns treated 'seriously' and acted up promptly?
We have a Lobular Private Group too, if you wanted to join that one!
I think the Genomic Testing will become cheaper as time marches on, as it is being used more often now - others will know more about it than me. Tho we had it done in 2019 when my husband was diagnosed with Mets - his samples were sent off to the USA for testing/results - and was quite expensive!
take care, stay well1 -
Wow - thank you so very much for responding and for the information incredible! The Mets were picked up as an incidental when having non-cancer surgery where two tiny nodules were found in the peritoneum (where lobular sometimes jumps to) and removed. I will join the private lobular breast cancer group also thank you.
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Hi @MargaretTurner
Also consider joining the private “Living With Metastatic Breast Cancer” private group on here.
Re clinical trials - your oncologist should know about these , but it may depend on the centre where you are being treated.0 -
Hi @MargaretTurner, I just started on Kisqali and Fulvestrant. Letrozole stopped working for me. So I guess if one treatment isn't helpful we go to another and the oncologist had knowledge of the range of options and also to clinical trail information about the non pbs drugs.
How to cope is a big question. Counselling can help, staying in the present moment is really helpful for me. I practice mindfulness and do meditation, yoga once a week and I just started some massage and reflexology which is free through my treating hospital. Maybe your oncologist or treating hospital can give you ideas. Another option is a support group. My hospital has an advanced cancer group once a month. Do you have a breast care nurse or have you tried the McGrath Foundation? Join the private mets group here as it's a good group.
Sorry you are in this situation. It's not easy that's for sure.1 -
Thank you so very much your comments and suggestions are really helpful!1
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Hi @MargaretTurner and @Cath62
I just wanted to say I recently tried reflexology after getting 3 free sessions at my cancer centre and the first session I fell asleep on the table which was a real surprise as it was 9am and I had 2 coffees at breakfast!
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That's great @Julez1958. I felt deep relaxation when I had it so have signed up for mote. I'll take whatever they are going to offer and give it ago. Whatever helps I say - it's all a bit trail and error as they saying goes.1
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I fell asleep during a reiki session whilst I was in Melbourne recently! Always a good sign!0
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Thank you for your motivation started group meditation today and yoga next week! Reiki and reflexology sound great and will look out for classes
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Hi Margaret,
we are on the same meds, it is nice to know I am not alone! I have my first CT scan this week since treatment started, I am glad you have had success with this treatment, it gives me hope. I have had 3 rounds of kisqali and it still makes me lightheaded and queasy for a couple hours after I take it (which is after breakfast). I take the rest of my cocktail after dinner. Are you coping better now with your meds? You are 7 months ahead of me on this journey. The future seems a rocky road, I do wonder what the next treatment will be once my cancer mutates and when that will be. I really don't want chemo again but that is the backstop. Living in the moment is sometimes hard, I have a few projects and am trying hard to read novels again (but only good ones, time is too short).
I have found exercise does help I am going to aqua exercise class 2 times a week. When I am feel more positive that I am not going to die soon I will go back to yoga.
All the best keep me posted on your progress.
kind regards Kim1 -
Hi Kim,Great to hear from you Kisqali buddy and likewise. I've been on the combination (with Letrozole) since April 2023 and it's doing its job superbly. Have PET scans every 6 months. I do seem to rotate through all of the side effects however, they are manageable and I've learned to work around them. Fatigue is the most common and I just give in to early nights. Agree coping with uncertainty is a challenge and find that meditation helps (when I remember!). There is always hope and other medications. I am buoyed by my oncologist in hearing that treatments continue to evolve and there will be another treatment if this fails. Agree don't think I could do chemo again that was challenging many years ago. Exercise I find helps my spirits and my body and swimming, walking, and Aqua Aerobics are favorites. Let's keep in touch x1
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Hello there,
I too am on both Letrozole and Kisqali. Well, I was until very recently. Have had 5 months of Kisqali, but my most recent full blood tests showed crazy Liver function tests. Had to have a liver ultrasound to ensure nothing scary or sinister, and will be off these until the levels come down to normal. There were a whole bunch of weird symptoms that I kind of ignored, but now make sense. I was taking my Kisqali before bed, and usually during the 2nd week I would get really bad headaches.
Will have to wait and see what happens next - have med onc again this week to see if my levels have started to return to normal and we'll go from there.
These side effects were on the EviQ information sheet for this medication, but because they were listed as weeks to months, I kind of ignored them.
Hope you're both feeling OK (as can be) on these meds.
take care
Kelly2 -
Hello Kelly,Good to hear from you and your experience with Kisqali. I did have a dose reduction early on which helped with side effects that were too much for my body to cope with. Hope your med onc visit goes well and you can start to consider plan b) with your oncologist. Keep in touch it's lovely to hear from others and share experiences it helps to not feel so alone on this journey.2
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Hi everyone - seeking advice on any particular travel insurance organisations that offer insurance cover for those of us living well with metastatic cancer. Planning an overseas trip for 2025. Will stay close or in countries with reciprocal medical arrangements. Is there any company that will provide cover for emergency evacuation insurance or cover in case of cancellation holiday insurance due to ill health prior to leaving? I already have general travel insurance cover for all else other than medical through credit card travel insurance. Oncologists encourage travel when well but insurance companies do not appear to accept their written OK to travel. Appreciate any advice - thank you
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Hi @MargaretTurner, apparently a company called All Clear provides insurance if your metastatic but I haven't checked it out. I believe it is insanely expensive and I don't know if it covers medical evacuation. You would need to check.
Medical evacuation is incredibly expensive. A friend who couldn't get travel insurance for a pre existing heart condition went to Greece to see his mother. Unfortunately he had a stroke and required medical evacuation back to Australia. That cost over $400,000. 00. His family set up a go fund me account, drew on their superannuation, sold what they could and also went into debt to get him home.
I love travelling so much. It has been an enormous part of my life but being metastatic now I am just travelling in Australia and will consider medical reciprocated countries. I am limited to my 28 day treatment cycle now but I do get around. Off to NZ for 2 weeks in October.
Happy travels1
