Scan results

[Liessie2014]

hi everyone , I have just had my oncologist on the phone with scan results , she said the nodules in both lungs have grown by millimetres, she said I can stay on Ibrance and Letrozole , for now , until I have the next scan in 3 months time , I am a bit concerned , I have been on the same meds for 4 years so I am lucky , it’s just a weird feeling at the moment , I am staying positive and carry on as normal as I can , I don’t know wether to tell my family about the changes or just wait until my next scan

[Kahe]

Hi Liessie, i am also on ibrance for 2 years and have mets in my right lung.

A while ago i had a couple of mm increase in one tumour. My oncologist suggested waiting 3 months before scanning again. When we did scan, all was fine. I was told it cld have been a difference in measurement that was not relevant.

I have had an increase of 1 mm again in a tumour, this last scan. As with u , oncologist has advised to wait and scan again in Jan. Hopefully we will both be fine and these differences are not relevant. Best of luck K

[Liessie2014 in reply to Kahe]

Hi Kahe, Thankyou for your positive reply , and yeah Hopefully we will both be fine after our next scan ❤️

[Kahe in reply to Liessie2014]

Hi L, just to update you on my situation. I got a copy of my scan results today to see that "a few" of my nodules had increased in size. So not just one but "a few". Like you i will wait until late Dec or Jan to scan again. Fingers crossed for us both. I will keep you updated... take care K

[Liessie2014 in reply to Kahe]

Hi Kahe,thanks for your update, I will keep my fingers crossed for us both too, ❤️

[Kerryd22]

I have been years on Exemestane but in 2023 a scan showed progression into a new mesenteric node. The radiologist told the oncologist to order a follow up scan in 12 weeks and not to change treatment yet. In 12 weeks the met was half the size. In six months it was again half the size. It disappeared entirely on the next scan. Just because you have had a very small progression it doesn’t necessarily mean failure. That was my experience and as you’ve been stable for so long it could easily be yours too.

All the best

Kerry

[Liessie2014 in reply to Kerryd22]

Thankyou ❤️

[TE53_67]

I have also been told that 1mm on an already small node is so hard to measure. Try not too worry too much. X

[Liessie2014 in reply to TE53_67]

Thankyou ❤️

[Liessie2014 in reply to TE53_67]

Thankyou ❤️

[love2golfwell]

Sending you hugs and prayers and hopefully your next scan will show good results for you. I'm glad your doctor is not being quick to change your meds.

[Liessie2014 in reply to love2golfwell]

Thankyou ❤️

[Kiss_my_grits]

it may be that the change could be a measurement issue, and 3 months time will show which. It’s all nerve wracking! Glad you have gotten four years, you may get many more!! 🤞🏻

[Liessie2014 in reply to Kiss_my_grits]

Thankyou ❤️

[Beryl71]

I had same changes last year. I really wanted to stay on ibrance so my oncologist changed letrozole to fulvestrant injections. I've got better and better and the growth in the nodules was reversed. They are now too small to measure and tumour markers are down. So just another step along the way. Try not to get too down about it. Good luck! X

[Liessie2014 in reply to Beryl71]

Thankyou ❤️

[Gingerann1]

I agree with the other posters but wanted to comment on your question about sharing with family. If it helps you while waiting for your next scan to share that you are a little nervous about next scan results and need a little support it may help to share . If you don’t want to worry them about something that may turn out to be nothing than waiting until next scan results may be wise. You know your family best….. Praying that you will get good news!🙏🏻

[Liessie2014 in reply to Gingerann1]

Thankyou ❤️

[Hazelgreen]

If your next scan is discouraging, ask your oncologist to check out the research findings with ribociclib (Kisqali). You may find this pill is as easy to take as Ibrance. Best of Wishes, Cindy

[awesome4ever in reply to Hazelgreen]

I think she lives in the UK and likely will not have the opportunity to switch from one CDK4/6 inhibitor to another after she has had an extended run. I'm Canadian and when my Ibrance failed, switching to another one in the same group was not an option. I'm under the age of 65. Take care.

[Hazelgreen in reply to awesome4ever]

Hi Awesome, I'm a Canadian in Saskatoon, SK. Perhaps because he knows I read research, my oncologist doesn't try to dictate my treatment. Not many physicians actually take the time to stay up-to-date...

According to the online comparison, "The choice between Kisqali and Ibrance may depend on various factors, including patient characteristics, side effect profiles, dosing schedules, and the specific combination of therapies used."

My understanding is that ribociclib has been shown to be effective in cases where palbociclib has not.

Best of wishes, Cindy

[awesome4ever in reply to Hazelgreen]

Yes I knew you were Canadian. I keep up with all research as well and my oncologist is wonderful. She doesn't dictate my treatment as we make all decisions together within the guidelines but there is a pre-determined algorithm of treatments that are covered by the cancer board. I've read all the papers on Kisqali and I know it is the preferred 1st line of treatment for HR+HER2- now but when I started back in 2018 Ibrance was the only CDK 4/6 inhibitor on the market and I got 5 years from it. I'm assuming that when you started on anything beyond an aromatase inhibitor it was Kisqali and it's wonderful that it is working well for you and that the ongoing papers support it's efficacy. May it keep working for you for a long time. Take care.

[Hazelgreen in reply to awesome4ever]

Why did you say, "when my Ibrance failed, switching to another one in the same group was not an option"? That made no sense to me as clearly what is most important is to find a treatment that works!

[awesome4ever in reply to Hazelgreen]

Hi Hazelgreen. Unless you have private insurance coverage the drugs that are funded by each province have restrictions as to what each individual can access fully funded. Saskatchewan is no different. Each province determines what they will cover regardless if it has been approved by Health Canada and been vetted through the CDA (Canada's FDA equivalent) and you can find those details here in the FAQ's.

saskcancer.ca/health-care-p...

Here's a link to the cancer drugs that are funded in your province.

saskcancer.ca/sites/default...

Under any of the CDK 4/6 inhibitors it clearly states:

"Only one CDK 4/6 inhibitor (ribociclib or palbociclib) in combination with a non-steroidal aromatase inhibitor is funded in the first-line setting"

This is what the oncologists are governed by and therefore limited to prescribe. There are many restrictions and caveats as to what can be prescribed and when. As I said if a patient started one of the CDK 4/6 inhibitors and couldn't tolerate it even at lower levels then the oncologist could prescribe another but once a patient has had a successful run on a drug then the limitations apply. Hence I had 5 years on Ibrance so when it was deemed that I had to change treatments as it was no longer working my next line of treatment had to be from a different category of drug...I was moved to Everolimus and Exemestane.

Hope this explains things. Take care.

[Liessie2014 in reply to Hazelgreen]

Thankyou ❤️

[Liessie2014 in reply to Hazelgreen]

Thankyou❤️

[Hazelgreen]

I was first diagnosed with breast cancer at age 60 in 2006. After surgery, I declined chemotherapy, but took the usual adjuvant tamoxifen for five years. It was another eight years before the swelling of my right arm in 2019 made it obvious that the breast cancer had metastasized. Meanwhile, I had forgotten about it.

Since I refused chemotherapy (I decided my age of 74 made it likely that I could not afford to kill more cells), I was only offered tamoxifen as treatment. I initially took a double dose of tamoxifen, and this brought my cancer markers down to almost a normal level in the first year. However, my oncologist refused to allow this in the second year so my markers again rose dramatically. A new oncologist then prescribed ribociclib (Kisqali) which I now take in 400 mg doses (only on weekdays) but I monitor my cancer markers monthly to ensure that they stay in a normal range.

I have not heard about a "pre-determined algorithm of treatments that are covered by the cancer board" in Saskatchewan. This makes zero sense to me! All effective cancer treatments should be covered by all "cancer boards", if such exist.

Kisqali is a similar drug to Ibrance, but it is more effective overall. I would ask for another oncologist if I were you. At the very least, I would demand a trial of six months on Kisqali. Keep in mind that our tax dollars pay for both our medical treatments, and the training of physicians in Saskatchewan. Like all government workers, they are there because we pay them to serve us (I tell you this from the perspective of a former federal civil servant).

[Books48]

Hi Lessie, I can understand how you feel! With changes I don’t want to even tell my husband! I have been on ibrance for over 3 years now! I know more changes can happen, but I think our drs. Are very good at making a change to help! There can be a desecration in measuring, so try not to worry too much (easier said then done-right?)! Let us know about your next scan-I am sending prayers and lots of positive thoughts🤗

[Liessie2014 in reply to Books48]

Hi Books48, Thankyou , I will let you know about my next scan results , it seems mad that it will be in 2025 , ❤️