My sister, who is 51, just found out she has stage 4 metastic breast cancer which has spread to her bone (pelvic bone and chest bone). She has an appointment with 2 oncologists to get their opinion on treatment. Her first oncologist has recommended kisqali with aromatase inhibitor leprozole.
Can anyone who has had a good treatment experience share what worked for them? which inhibitor had the least side effects? How has kisqali worked for them? Any recommendations?
Thanks so much and God bless,
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JustFoundOut51
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I had Letrazole as the first line and I don’t recall any problems for the short time I was on it. Some people find it’s very successful and they’re still on it years later. My third line is Exemestane taken with Afinitor for the first ten months. I started Exemestane in July 2016 and I’m still on it.
There’s an unfortunate truth that your sister will find out. Everyone reacts differently and there’s no way of knowing what side effects you will get or how long any drug will work until you try it. If you have ER+ cancer these days it’s usually a hormone blocker and a CDK4/6 inhibitor as the first line. komen.org/breast-cancer/tre...
I’ve had no real problems with either Letrazole or Exemestane except Letrazole didn’t work for me even though my cancer is 100% oestrogen positive. Why would one work when the other didn’t? No idea. I can name several women who have been on Letrazole for up to a decade. As the bone Mets were moving up my spine and into my skull very aggressively I had IV chemotherapy and maybe that’s why the second AI worked or maybe it was the Afinitor.
I’m sorry to hear about your sister but bone Mets aren’t the worst kind of met to have. To be fair there’s no ideal metastasis to have but bone only is a bit easier. That’s my opinion anyway!
I had liver inflammation from Afinitor (it’s a rare side effect) and after ten months the liver numbers rose so high it was decided I would have to stop but as I hadn’t had real progression I was to stay on Exemestane until I did have progression. The oncologist thought I’d probably get another couple of years from Exemestane before the Mets went to my liver. That was in April 2017 and I still am listed as stable and with bone Mets only much to the surprise of the oncologists! All it shows is that there’s no way that doctors can accurately predict the path our cancer will take, no matter how well intentioned they are.
Sorry for the recent discovery. I have had a very similar experience. My cancer was discovered when I was 50 and it was stage 4 spread to bones then (skull, spine, ribcage, shoulders, collar bone and pelvis).
That was 2 years 5months ago and there's been no further progression.
I was started on the same primary med as your sisters recommendedation....Kisqali as the cdk inhibitor, together with Zoladex implant hormone inhibitor (a shot in the ovary area once a month that releases a slow dissolving dose that lasts until the next one and the side that it's shot into is alternated each time). I also had Letrozole oral hormone blockers daily, vitamin D with Calcium, and monthly Zometa infusions all prescribed by the oncologist.
I checked 2nd and 3rd opinions and all were the same.
For me the Kisqali caused my liver enzymes to rocket and I was switched to Ibrance instead. All other meds remain the same ....except the Zometa infusions are now every 3 months.
Everyone reacts differently so don't be discouraged, but I do advise that it's worth checking possible side effects out to know what to look out for....for me it was a rash like prickly heat on my arms and legs that signalled the Kisqali issues.
In general as the hormone blockers induce menopause your sis can expect to have symptoms associated like hot sweats, brain fog, achy joints, sleep disruptions and metabolism changes making it easier to gain weight...oh and also reduced libido.
Thank you so much, Zoe. Your advice is so much appreciated. I just shared with her your feedback and we are taking the precious advice we are getting here.
I was diagnosed in 2015 with two tumors in right breast, one ductal and one lobular. During mastectomy, they discovered it had already metastasized to entire skeleton. My oncologist was old with 40 years of experience. He put me on Anastrozole and Faslodex. It worked for 6 1/2 years. Virtually no side effects. I’ll be forever grateful that he put me on those two drugs and that I felt pretty good for all that time. Good luck with your decisions!
Hi nocillo - like you, two types b/c within 1 yr of each other and the 2nd one 8cm pleomorphic lobular was already metastatic to spine. That was 2 .5 yrs ago. Curious that you had two types of hormone blocker at same time but no cdk inhibitor. Best wishes anyway.
Second line of treatment was Ibrance and Tamoxifen that worked for about 2 years. Now I’m on Verzenio and Letrozole since September. The fatigue is practically debilitating at this point, but I may see if I can reduce the dosage. I’m on my 4th oncologist. We moved twice and one left for a director’s position. I trust my current one too. My original one retired anyway 😩
At 78, I'm much older than your sister. I've now been on 600mg of ribociclib (Kisqali) and regular letrozole since December 2021. This combination has kept my cancer mets in the normal range. Once I switched to a "5 days on and 2 days off" schedule, I was also able to keep my neutrophils at a reasonable level. However, your sister should know that the oncologist guidelines still recommend the 21 days on and 7 days off schedule despite what it does to the patient's neutrophils. I hope she has a research-oriented oncologist. Good Luck! Cindy
Hi , sorry about your sister's diagnosis. I was diagnosed spring 2020, and was on palbociclib and letrozole til recently, when the letrozole was changed to Fulvestrant because of possible patch developing in mammary lymph gland. I've not had side effects at all and have felt fit and well throughout since starting my treatment.Good luck,
I have same diagnosis as your sister. I’ve been on Ibrance and Letrozole 4 years. At first I was stable but now I'm NEAD. Joint pain and fatigue can be a thing but manageable,
I was diagnosed September 2019, I have been on same treatment since, with no progression. I have stage 4 breast cancer that metastasized into my bones.
I’m on ibrance 75mg and anastrozole.
I did do a round of radiation to my hip/pelvis, for pain mostly, I didn’t feel it was doing any thing.
I'm so sorry about your sister but hope she will receive great care from her doctors. I have been on Ibrance 125 mg which is the highest dose. Ibrance is also an inhibitor. I also take Letrozole. I have been on this combination for 3 years and am doing well so far. For me the side effects of Ibrance have not been difficult. The main thing is that my hair has thinned so I keep it cut short. All of these inhibitors affect blood counts but so far my white blood count and neutrophils have been okay. Everyone has different tolerances to these meds. Your sister should ask the reasoning for preferring Kisqali over the other inhibitors. I hope she gets the answers she seeks and can make a good decision about how to proceed. I'm sure yo will be a good support system for her. Sending her hugs and prayers.
hi. pls don't hold me to this, just going by info I believe I have read on this forum over time. I believe Ibrance was the first CDK4-6 inhibitor that was approved by FDA and many women were started on ibrance and it seems to have worked well for many. and then Verzenio and Kisquali, also CDK4-6 inhibitors, became available. each one with it's own unique side effects. everyone reacts differently and what works for one woman with limited side effects, whereas another woman may have serious side effects and are switched to a different one with success. and vice versa. also, if one CDK4-6 stops working, you can be switched to one of the others....so some women have been on all three at some point. ( I realize you know all this but explaining to JustFoundout as well😊).
but here is the part you may not be aware of...not sure? now that all three been available for several years now, they are doing comparison studies. I believe that the biggest difference in efficacy is that while Ibrance increases PFS (Progressions Free Survival), it does not increase OS (Overall Survival). whereas Kisquali, I believe, does increase OS. perhaps that is a determining factor when oncologists recommend a certain one over the other.?. just throwing in my 2 cents. like I already said, I am just going from memory...which is not so great these days😉. maybe others will agree or disagree.
best wishes to you💛. and best wishes to Justfoundout's sister💛.
Your sister is lucky to have such a wonderful brother, here looking for what others have experienced! Family support means alot! I'm a long termer with MBC, a bit over 19 1/2 years! Metastatic at first diagnosis. "extensive bone mets" in spine, pelvis, rib and shoulder blade. I went into "learn all I can" mode, bought books, attended BC and MBC conferences. There was a 30 year survivor at the first conference I attended and that sure gave me hope! Like others have said, each of us has a unique set of cancer cells and our own reaction to each drug. Bone mets are not considered lethal. When I was diagnosed the "targeted" drugs weren't available yet. My first med was Letrozole, with monthly Zometa infusions for the bone mets. I quickly became stable and got almost five years from the Letrozole. Next was Faslodex (aka Fulvestrant). which worked for me for over 9 years! It's given by injection in the hip, It was one shot when I started and was upped to two injections after a few years. Then another estrogen blocker, cannot think of it's name at the moment. My short term memory are not what they were and I saw a neurologist about that and he said it was normal for my age (77), whew! The side effect I got from the estrogen blockers was hot flashes, bright red face and sweat rolling down my face, impossible to hide or ignore! The drug Effexor has helped with alot--down many hot flashes a day to very occasional warm surges! Earlier this year it was discovered that my cancer had stopped being E+ and was now triple negative with fewer treatment options. So now I'm on actual "chemotherapy" , a pill called Xeloda. It's made my hands and feet red, both numb and sensitive, cold most of the time, but it is working! Having an onc I trust, good family and friend support, learning all I could, becoming stable and meeting others with MBC have been the things that have kept me sane during this crazy cancer experience. A woman I met described it as riding a roller coaster with a blind fold on and I think that's a great analogy! I sounds like your sister is on the right track! I hope she will do well for a long long time and that you and her husband will be with her with love and support. Oh, a sense of humor helps alot! lol
Thank you so much for your words of advice and encouragement! I quickly shared this with her and her husband. Your experience is invaluable and we will learn from shared experience!
I was diagnosed with stage 4 Breast cancer and started out with Doxirubicin (chemo) and radiation. The mets had spread to my brain, bones, lungs, lymph nodes. Rough time for sure. But that was 5.5 years ago. After chemo and radiation, I started on Ibrance and Letrozole. Also, an injection every 4-6 months to strengthen my bones (can't recall the name of it right now). I knew I was going to get sicker before I got better, and that line of thought actually helped me through it. Because I KNEW I would get better.
Try to keep positive thoughts and look at every good breath, and feel good moment as a great incentive to keep fighting. Be confident that your sister (and you) are included in many prayers! 🌺
JustFoundOut51 - you've received some great advice / information on treatment . I had early stage breast cancer and did all the treatment in 2008 which included 6 years of letrozole . When I had a recurrence to stage IV in 2019 , my oncologist put me on Ibrance (similar to Kisquali ) and fulvestrant (as my stage IV biopsy showed the cancer to still be estrogen and progesterone positive and I had already taken letrozole).
I've been on Ibrance / fulvestrant for 4 years my scans have shown no evidence of active disease for over 3 years. I feel pretty good on this treatment and chose to continue to work full time (I sell real estate and love my job !) like many people on Ibrance, it lowered my white blood cells too low and my dose was lowered twice in the first year . I have been on 75mg Ibrance for 3 years now .
Ibrance/ Kisquali and Verzenio are all cdk 4/6 meds and have really shown to give stage IV patients more time without progression (median is around 2 years). Kisquali has had the most favorable progression free survival stats to date .
As you know, this diagnosis is a shock and is devastating . It took me over a year to find a small, very small sense of peace. Initially, I thought i would die within 2 years . I'm still here and with stable scans at my 4 year stage IV dx anniversary (tomorrow !). We don't know how long treatment will work or what is next . We all just hang in there and support each other as much as we can . I had learned so much from others in this group and we welcome you and your sister .
Thank you so much Aprilfoolz❤️ Your words mean a lot to me, and I will share this with my sister and her husband. We are learning so much from the community - really love and appreciate all the helpful shared experiences and advice.
I've been on Letrozole and Ibrance since January 2018. I've had excellent results. My mets were hip, lower back and brain. I had gamma knife, radiation and surgery. Claritin has helped greatly with bone pain. Side effects level off over time, nothing that I would consider severe. I continue to work full time as a HS teacher. My dosage of Ibrance was reduced to 100 mg after several months. Good luck and God bless.
I should also add that I receive bone strengthening infusions of Zometa. I did these monthly for about 2 years, to which now I have them quarterly. I have managed really well with them as well.
I realize that you are getting reports on many different experiences, as well as explanations about the CDK4/6 inhibitors and less on aromatase inhibitors. I want to throw in my experience. -- First, is your sister post-menopausal? If not, it makes a difference in treatment. Do you know the type of metastatic breast cancer she has? There is estrogen receptor positive or negative, progesterone positive or negative, and HER2 positive or negative. About 80% of us are ER+ (or, with progesterone, HR+ -- hormone Receptor positive). So that is sort of the standard starting point. As someone else said, bone-only is the best place to be, given that no one wants to be here.
I started with fulvestrant and Ibrance (palbociclib). As Kokopelli noted, recent research has shown that palbo is the least effective of the three CDK4/6 inhibitors. Nonetheless, the combo worked well for me for two years. I had many metastases, but was NEAD (no evidence of active disease) rather quickly. I think fulvestrant worked incredibly well for me, and the side effects were minimal. It works differently from the other aromatase inhibitors (anastrozole, letrozole and exemestane.) -- Another thing you will learn here is that some of us are able to stay on the same meds for years. Others of us develop resistance and have to move on to another treatment.
Thank you so much TammyCross. she is ER+, PR +, and HER negative. And she has entered menopause (is that post-menopausal. I believe her onco has started a program (she is starting today actually) of kisqali, letrozole. I believe she will be on the kis for 3 weeks and then one week break, if I'm not mistaken - I will confirm.
Is kisqali of 3 tablets a day the usual dose, do you know?
Yes, she is post menopausal. That is good. She doesn't have to take another med to throw her into it.
I had a terrible time on letrozole and had to go off it. Fulvestrant injections were much better for me, anastrozole was a little better, and exemestane is the best of those three. If it is causing her too much trouble with letrozole (what I had was bad hip pain), she can switch to one of the others. Other people tolerate it.
Yes, Kisqali comes in 200 mg pills. To get the full dose, one has to take three at once. The regime is 3 weeks of 600 mg, a week off to let the body recover, then 3 weeks on, etc. As long as it works.
I am starting Kisqali this week, too. -- If I can get it free through the Patient Assistance Program at Novartis. It is taking a while to enroll. Not that I am destitute, but it is very expensive out of pocket. Even with insurance, my co-pays would be $4000-7000/month.
One has to have ekgs before starting Kisqali because of the risk of prolonged QT (the interval it takes the heart to regroup, roughly). Mine was already a little high, so my oncologist is starting me on 400 mg (two pills at once, once a day, instead of 3).
Initially mine was stage 4 breast to bone spread thru spine and hip. Area. I didn’t do I v chemo radiation or surgery. It was found aug 2018. I did ibrance and letrozole for three years. It worked but then tumor markers rose. Affinitor didn’t work well or fulvesterant by itself for a few months . No. -now on xeloda it’s working well.🙏 if you are young then chemo might be ok for you - I am 68 now and didn’t feel good about it. I wish you well. 🌹
Thank you so much Eliactida! Do you know why surgery to remove the breast tumor and then targetted treatment on the spine and hip was not considered? I was wondering the same as your diagnosis is very similar to my sister - though her spread was to the sternum and pelvic bone.
Most people don’t have surgery once the cancer is stage four. It’s not curable and while some people dislike the idea that the tumour isn’t removed there’s no advantage in having breast surgery. That’s been the subject of analysis which is why surgery is not generally offered. There is an advantage to keeping the breast tumour because it’s a way to measure the success of the drugs. When I was first diagnosed I was on Letrazole as I said earlier and I had bone Mets only. Progression is a thirty percent increase of real estate consumed by Mets or movement into a new organ. Mets are hard to measure because successful treatment will stop some Mets and heal the area but other Mets might continue. I have a pathological fracture of the right hip and it was the reason I found out I had cancer. It was extremely painful and I had radiation to it. But years later one scan might show activity in the right hip one month and the next scan it was doing nothing but the left hip had flared up. I was always declared as stable even though over time I have developed Mets from my head to my toe. The Letrazole was deemed not to work when the scan showed the breast tumour had doubled in size and bone Mets had moved into my skull. The last scan showed the breast tumour has completely disappeared from the scan. In March a mesenteric node had lit up but in June the progression had receded and the Mets were half the size. Coupled with the fact the breast tumour was no longer visible and the abdominal node was getting smaller it was decided not to change treatment yet. Having the breast cancer removed takes away a checkpoint that can be useful. That’s what I tell myself and as a friend who had survived early breast cancer was horrified that I would not be offered surgery, and she really couldn’t understand why I accepted that, I did need to convince myself that it was a good idea! And I believe it had been worthwhile.
Hello! Yes all was offered to me even though the dr told me he could not save me it is terminal. At that point I put it in Gods hands it was my choice. I personally didn’t feel I would make it as I have diabetes and slow healer it was to be a year treatment. I have had several friends that died after 2nd or third chemo. I know because there are others that have had it and are older than me. I’m 68 -I have lived a good life-kids grown and no grandkids . Read my profile and yes I was lucky to find another like me. She is still on Ibrance after 6 years and doing well. Everyone responds differently and I’m sure your sister will deceide what treatment is best. Be strong for her. We are all fighting this together🙏✝️
I am so sorry for your sister's recent diagnosis. I'm sure she and you are numb by the diagnosis like all of us that have received this horrible news. Many thoughts go through your mind. Rest assured this group will help. It is the forum I lean on the most. As an advocate for you sister I would recommend you or someone close to attend all her appointments with her and take notes, ask questions etc. Many times you will hear something different than your sister. From my experience my husband retained far more of the conversations and visit information than I did initially. A chronological diary of appointments and procedures could be very important. Particularly if you switch ONCs. Be her own best advocate and don't be afraid to ask any questions. Several books I would recommend reading
The Insider's Guide to Metastatic Breast Cancer. This book is a great resource for conventional treatments. (1st line, 2nd line, 3rd line treatments etc)
Eat Right to Beat Disease - Discusses the importance of gut health and food that can help stop progression and possibly kill cancer stem cell - All with research to back it up
How to Starve Cancer - Discusses pathways within the body to hopefully close to stop progression - more scientific (My husband had to read several times. It was over my head particularly after chemo brain)
The Metabolic Approach to Cancer
I would recommend getting her Vitamin D tested. Many ONCs don't make this a priority or care. Over 90% of breast cancer diagnoses are Vitamin D deficient, over 80% extremely deficient. From my research the normal above 30 is the minimum. If your testing is similar to mine the score I strive for is 80-90. I pay about $90 every 4 months out of pocket to have mine checked. It is my understanding if your Vitamin D is not sufficient your medication will be less effective. Please keep us posted on how things are going. God Bless!!
Thank you so much ba5083! What you shared is invaluable and I will relay this to them right away. It is such a blessing to have this community with the support and care shown❤️ I will definitely keep you updated as she begins her treatment.
A thought I had, and wondering if you know - why surgery to remove the breast tumor and then targetted treatment on the areas of spread is not more common? I just think logically, wouldn't it seem a better path, to remove the breast tumor first?
Once the cancer has spread there is no need to put the person through the surgical process. Although it is the primary site and seems logical that removing the primary would help stop or slow down the spread it unfortunately doesn't work that way. Once it has spread all sites now have the ability to release cancer stim cells to metastasize. I have always heard that cancer is spread with surgeries. Although true to some degree I have learned that oxygen actually kills cancer. What causes the cancer to spread is breaking up the tumor during surgery and the inflammation from the surgery. If it was only in the breast that would be the course of action.
My husband forwarded this article to me a couple of days ago that might be of some interest - dailymail.co.uk/health/arti...
Hopefully that helps. I will send you a direct message
I was first diagnosed in 2001. I had a mastectomy, chemo and radiation. On Femara for 5 years. Then in 2013 cancer metastasized to my bones. I was on Exemestane and Zometa for 7 years. I have tried Ibrance for 7 months but the fatigue was too much. Now I am on Kisqali. I have developed shortness of breath and have just started seeing a pulmonologist. At this time I do not know what is causing the shortness of breath. Wishing the best for your sister.
Thank you so much for sharing your experience, Cowgirl❤️❤️❤️ I will let you know how she does - she's on her second day with kisqali and letrozole. I just hope the side effects stay at bay or are manageable.
Hi. I am on my 3rd round of Kisqali (with letrozole) and doing well. ( I am 57 and had a breast cancer recurrence after 15 years in my lung; had a lung resection in June that determined the breast cancer has sprea.) Only side effect (and this is probably from the letrozole) is occasional hot flashes and occasional joint aches. I exercise five or six days a week (rotation of walking, peloton, weights, rebounder). I eat and drink pretty much everything. Sending love and light to your sister, you, and your families.
It's unfortunate to receive a MBC diagnosis. I've been down that road as well. I I had had stage I diagnosis for my 60th birthday 15 yrs ago. Went through the lumpectomy and arimidex for 5 yrs. Had an oncodiagnosis score of 7. I was told not to worry as my chance of recurrence was very small. Well, someone has to be in that very small group and it turned out to be me.
During a routine mammogram it was found to have recurred. I have stage IV MBC. The mets are in my upper spine and a couple of ribs. They are not noticeable. Since Oct, 2018 I have been on faslodex and Ibrance. I had easily manageable side effects, Joint pain, stiffness and thinning hair that is virtually unnoticeable, I have had no disease progression since starting this regimen.
I hope that your sister is one of the lucky ones. I was told this could be treated as a chronic disease. I didn't believe it. I was wrong. Good Luck. May whatever they put you on keeps you stable. Don't give up hope
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I am wondering again, what do those of you on kisqali do when your ANC is lower than 1?
NED with Kisqali
Kisqali and Insurance Company
