Adding Kisqali to Letrozale treatment

[mimosa412]

It was just suggested to me to add Kisqali to my treatment of Letrozole. I am "cancer free" since I had a masectomy and everything was taken out. Are there any others on this chat with the same experience?

[awesome4ever]

Hi Mimosa412. Congratulations on being 'cancer free'. This board deals with women who have metastatic breast cancer with no chance of cure so probably is an inappropriate board for you. You will probably have more in common with any questions you have on a board dedicated to people who have or had breast cancer in other stages rather than advanced like here. Good luck. I think the link below is to a board where you should find more support for your needs at this time. Take care.

healthunlocked.com/share-br...

or

healthunlocked.com/breast-c...

[mimosa412 in reply to awesome4ever]

thank you for your reply. I did find some helpful information on the sites you recommended. I am new to this platform so how do I get to see different group postings?

[awesome4ever in reply to mimosa412]

Hi Mimosa412. I'm happy that you found helpful information on the other sites. Several ladies on the board have disagreed with my comments to you. Trust me they came from a place of love and you not having to read so many of the topics that are very real to us at Stage 4 but are not with early stage. I know I wouldn't want to be a member of this Advanced cancer board if I didn't need to be. No disrespect to the lovely ladies here but personally I would much prefer to chat with others in similar situations to me and to be always looking forward with positive thoughts and not ones thinking of when the other shoe will drop.

As to seeing other group postings....in the link above to the right you can click on "My Hub". Click on communities and join whatever boards are of interest to you. Once you join the boards you will have access to read all the posts. I believe they will all appear together on your one main page. You may end up with lots of posts if you join multiples so just adjust your settings on each board to make it easier to see and read.

Happy New Year to you and my wish to you is that you stay cancer free for many years to come. Take care.

[bikebabe]

awesome is right. There’s another forum where you will probably find posts about trials of cdk4-6 inhibitors (kisqali/ibrance) for women post surgery and ‘cancer free’ but at high risk of recurrence. It’s about weighing up the risk/benefits. Best wishes for your own journey.

[Mimiholl]

I too have been cancer free stage IV breast cancer and t7 bone cancer had 26 rounds of red devil a lumpectomy and 6 weeks radiation . since 2017. I have not had any recurrence but every months labs and every 6 months full body scans an full ct scans , still make me very nervous as to whether this will be the time the time they tell me it returned. I have had many scares with labs , and changing meds from ibrance 125 or 100. I’ve been sick with serious problems and had to go off meds for periods of time. I’ve had infusions and blood tranfusions too.

This is definitely where I should be asking questions or responding to others who have experienced the same . So Mimosa this is where you belong asking questions and seeking help we are all on the same journey ad in a club we didn’t ask to join. Stay blessed and healthy and enjoy this time.

[Best521 in reply to Mimiholl]

Hi Mimiholl, Thank you for your beautiful response to a fellow traveler on this journey. We all belong here sharing our experiences. Your strength and strong voice is inspiring. After reading your history, I look forward to learning more from you. My top notch care team has the medical treatment piece well covered; it is the people who come here to share their stories that I value. A big welcome to Mimosa412! We are a special group of people living our lives to the fullest and thriving, despite a scary diagnosis. We have much to look forward to given the advancements in treatments. Hopefully one of the members here could share their direct experience of Kisqali and Letrozole with you.

[awesome4ever in reply to Mimiholl]

Mimiholl absolutely this is the board for you. You are stage 4 and that makes perfect sense. I will say though my belief and that of most of the medical community is that when you are stage 4 you are never cancer free. The poster I was advising is probably either a stage 0 or stage 1 and I still feel strongly that being on a board with people with much more advanced cancer such as us is not a good idea. Mentally in my opinion it will just always put thoughts of reoccurance in their mind. Yes we know that reoccurrence happens frequently but really should a patient who is lucky enough to still be early stage spend all their days waiting for it instead of enjoying the fact that they are 'cancer free'. The struggles at that time are different than the ones we face. Any of the CDK 4/6 inhibitors such as Kisqali are now routinely given for early stage breast cancers so the poster will get many points of view from ladies with similar struggles. Sorry I'm not arguing, just stating my thoughts.

[Kerryd22 in reply to awesome4ever]

I agree with you, awesome4ever. Treatment is different for early stage cancer and outcomes are more positive. At stage four we’re terminal. And the approach of the medical teams is different. I’m on palliative treatment and have been for 8.5 years. I have little knowledge of what happens for early stage cancer as I was diagnosed de novo so any advice or comment I make is related to my experience at stage four. And to be honest I don’t want to become involved in discussions of early stage cancer. It’s curable. Mine isn’t. I’d prefer not to confuse the two.

My personal feeling is that we’re all best served by discussing our experiences with those who are in a similar situation.

We’ve discussed end of life decisions here. At stage four that’s to be expected. At the early stages it’s not. It’s a shame but it’s a fact of life.

All the best

Kerry

[Best521 in reply to Kerryd22]

Hi Kerry,

You raised a great point of discussion here between Terminal and Early Stage Breast Cancer. My diagnosis is Advanced Stage IV, treatable not curable. As I start my third year living as fully as possible with MBC, I have not been diagnosed as terminal. My oncologist fondly reminds me there are a number of tools in the toolbox offering much good life ahead of me. There are many people diagnosed with MBC who are thriving while living five, ten, or more years with MBC. Yes there are differences between all three diagnosis's as well as similarities. I am not one for hard lines but it begs the question should there be a separation between each of the stages without any crossover? You got me thinking 🤔

Happy New Year! Wishing you the Best in 2024.

[awesome4ever in reply to Best521]

Hi Best521. It clearly was written on all my documents from the start that my condition was terminal. I agree with you about treatable not curable of course and truthfully those words make us all feel better don't they. I remember when I first joined the board there was many discussions around calling MBC a chronic illness. Again I think that was coined by some oncologists to make discussions easier with patients. Like everyone else I was grasping at any piece of good news that I could get when I was first diagnosed so I asked my oncologist what she thought of that. We are close and I respect her....I remember she said to me and my hubby that as much as she would like to tell us that she agreed she just couldn't professionally say that it was. With chronic conditions as long as the patient takes care of their disease and follows advice they will continue to live a long life. With our metastatic disease we really have no control. We can do everything right all the time but the cancer always has the last say and we will all get progression no matter what we do.

I am very thankful that we do have more tools to fight and still maintain a good quality of life and the introduction of the CDK 4/6 inhibitors like Palbo for me when I was diagnosed back in 2018 has been a gamechanger. Without that I would have started on hormone therapy alone until it failed, then Xeloda and finally various infusion chemotherapies. I know in the US you have more options.

As to different boards for various stages, most support sites do distinguish between advanced cancer and early stage. I would personally never join an early stage cancer board and want to listen to all their success stories, which although I am truly happy for them, they aren't relevant to where I am at this stage. Obviously I wish they were but that ship has sailed unfortunately. Anyone can join whatever board they want but I do think it is important that they be told that there are perhaps more appropriate options for their stage. Take care.

[TammyCross in reply to awesome4ever]

Agree. My oncologist did not say "terminal," but I attended a virtual conference on metastatic bc and the keynote speaker, an Italian (I think) researcher began by saying, "It should be chronic but we are not there yet."

Also, I am on an aromatase inhibitor and about to start Kisqali. That decision is a no-brainer for me because I have stage 4 bc and the goal is to prolong life (OS) and PFS (progression free survival). It is a very different decision if one is "cancer free,"as I was for 11 years. I don't think I would have done it then -- but I was ignorant of the possibility of metastasis since I thought I was done with cancer.

[awesome4ever in reply to Kerryd22]

Thanks Kerry. Our journey is similar it seems. I was also diagnosed De Novo from the start and I am also deemed terminal here and any treatments/procedures I receive are part of palliative care. With our healthcare systems being more restricted than in particular the US we know we have less tools in our toolbox and we can't ask to try various different drugs just because we meet the criteria. My oncologist has to follow a pre-determined algorithm of treatments already approved by our Healthcare board. Unless a new drug can show it is far superior to something already on the board it will come down to cost in a public funded healthcare system. Take care.

[Best521]

Hi mimosa142, Great question and so wonderful to see you proactively taking positive steps to manage cancer. Knowing as much as possible about the potential effects of Kisqali and Letrozole is extremely empowering regardless of breast cancer stage. Hopefully you will find some great answers here. There are also a lot of inspiring people who are able to share good outcomes with you here and in other supportive communities.

Keep asking and Happy New Year!

[Cowgirl1951]

Mimosa412, I was on Kisqali for a year. After 6 months I started to have shortness of breath. I love to Carolina Shag Dance. I had to give it up because I would be gasping for breath after one dance. I told my oncologist. She took me off of Kisqali October 29. After a month I still had the same issue. Finally got an appointment with Pulmonolgist in November. Inhalers did not work. Dec 6 CTA scan showed Pneumonitis (lung inflammation) from Kisqali. I have been on prednisone since Dec 8. I don't feel like I am better. I don't leave my house without my daughter to go to appointments. If you do take Kisqali beware if you start to have shortness of breath. Stop it early and don't get to the point of Pneumonitis. We are all different. It may be great for you. Just be cautious. I have bone metastatsis only and should not be feeling the way I do. My vitals and bloodwork are good. Thank goodness the Pulmonolgist ordered a CTA for PE. I am a 22 year survivor. Metastatsis occurred March 2013. I hope you stay no evidence of disease (NED). Wishing you the best !

[Kerryd22 in reply to Cowgirl1951]

Ok cowgirl -my curiosity is piqued

What is the Carolina Shag Dance? Sounds energetic. Is it like line dancing?

I haven’t had Kisqali myself but it’s not the only drug that causes that side effect, unfortunately.

I hope your lung issues clear up because bone Mets should be relatively easy to deal with (although I know sometimes they aren’t) and unexpected complications are hard to deal with.

As you say everyone responds differently to each drug so it’s only when you try the drug that you’ll actually know what it’s doing for you.

All the best

Kerry

[Cowgirl1951 in reply to Kerryd22]

Hey Kerry, The Carolina Shag Dance is a swing dance like a jitterbug for couples. I live in Richmond VA suburbs and we have a local shag club. Every Spring and Fall there is a gathering of dancers from across US that meet in North Myrtle Beach SC. I was doing this to keep my body going and it is such a feel good dance.

Last Sept I went to The SOS Fall Migration on Main St North Myrtle Beach and stayed in the condo while my friends went dancing. I hope that I am well enough to go in April 2024.

I hope this link is successful. If it is not Google Charlie Womble and Jackie Magee. They are champions and are married.

youtu.be/aL2fra9nl6w?si=wwj...(Not working as expected?)

Enjoy, Kay

[TammyCross in reply to Cowgirl1951]

That would take a lot of breath! Better to look at non-champions. I have my group doing the Cupid Shuffle. Much easier!

[Cowgirl1951 in reply to TammyCross]

I love the Cupid Shuffle. It takes wind to do that too. I look forward to when I can dance again. Dancing is my passion.

[Discocat]

Hello

I have been on that combination.

As my first treatment plan at the start of diagnosis I was on Letrozole, Kisqali and also Zoladex and Zometa monthly.

It's difficult to compare through as in my case "success" was gaged by seeing shrinkage of the primary so it's a bit of a different situation.

I was only on Kisqali for about 3 months and it made my liver enzymes shoot up.

Symptoms were tiredness, tenderness in lower back shanks and a rash like prickly heat on my arms and legs.

I was switched to Ibrance that I continue to take and remain stable with no evidence of active disease (NEAD). But as I'm stage 4 with extensive bone mets I will never reach NED as there will always be traces of cancer.

Wishing you all the best and hope the combination works well for you.