Ribociclib/Kisqali with Letrozole - Any one on this combo?
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Hey all,
I just got appointment notification for CT scans of chest, abdomen and pelvis. These will be my first scans since starting this tx plan. I'm a little surprised as I thought I would have a bone scan to see if meds are working. Is this pretty standard? I'm panicking a little. Lots of anxiety this week for some reason.
I see MO tomorrow before starting my third cycle. Oy veh!
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If you haven't been scanned since the metastatic diagnosis, I would say normal protocol. I've had 3 pet/ct scans to follow progress of treatment and My MRIs yesterday because of pain. Try not to stress too much. Caution is good. Have a good one. Hugs and a peaceful night. J
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Had a CT scan yesterday with slight reduction to tumors. Things seem to have slowed down a bit but I am more than happy with the results. This is my 11th round of Kisqali. I am on 400mg per day and this allows me to lead a fairly normal life with minimal side effects. I have had an ache in my back, but the CT ruled out anything sinister.
My sugar skyrocketed after sweet binging over xmas so I decided to go on the Keto diet. I started on 27/12 and have already lost 4K (some of which I will put down to fluid) My sugar levels are back in normal ranges, and my blood pressure has dropped from 137/83 to 110/70. I will have to wait for blood tests to see what my lipids are like, but overall I have much more energy. I have heard some cancer patients have had good results in tumor reduction when on this diet too, so I will see what things look like after my next CT
Hope everyone is having a smoothe transition into 2019 and that Kisqali/letrozole keeps working for all of us!
Jackie
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Well my white count dropped again so I get another week break off meds and then I go to 400mg a day. Good news is that my MO said from blood work and physical exam he feels drugs are working. CT scans will tell for sure. I'm having them on February 4. I also got some alleviation of anxiety about some SE so that's good.
Hope you all are having a good day!
Cheer
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Sherry, I behaved the same way and after count went up I went to 400 and had no other drops in white blood count. You have natural anxiety but even the meds cause horrible anxiety for me but it sure kick the cancer into low gear.
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Thanks JoE777- that makes me feel better knowing others have done well on 400mg. I am so thankful for everyone who shares their experiences on these boards!
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I have been on the Kisqali/Letrozole combo since April 2018 and just found out that one of the meds has stopped working, not sure which one but from what I have read it sounds more like the Letrozole. The information out there reads that it is most likely the AI and not the targeted therapy that stops working. Also, my MO told me that it seems as though a lot of these treatments stop working after about 9-10 months. Now I'm faced with either getting involved in a clinical trial of Cisplatin and Veliparib (a PARP inhibitor) or trying Afinitor and Falsodex. The Kisqali worked great for most of the time, my PET scan in June showed significant improvement but now my scan I just had Monday showed that some of my bone mets have come back or gotten bigger. So now I have decisions to make. Has anyone else had this happen? If so, what was your next treatment option? Should I try a clinical trial or stick with something that has been around a while? Thanks for the help in advance.
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I have been on the Kisqali/Letrozole combo since April 2018 and just found out that one of the meds has stopped working, not sure which one but from what I have read it sounds more like the Letrozole. The information out there reads that it is most likely the AI and not the targeted therapy that stops working. Also, my MO told me that it seems as though a lot of these treatments stop working after about 9-10 months. Now I'm faced with either getting involved in a clinical trial of Cisplatin and Veliparib (a PARP inhibitor) or trying Afinitor and Falsodex. The Kisqali worked great for most of the time, my PET scan in June showed significant improvement but now my scan I just had Monday showed that some of my bone mets have come back or gotten bigger. So now I have decisions to make. Has anyone else had this happen? If so, what was your next treatment option? Should I try a clinical trial or stick with something that has been around a while? Thanks for the help in advance.
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hello,I am from South Australia. A long time metster. I am trying to get onto this combo but due to it not being my first line treatment, it will cost me $5000 Australian dollars per month for the Kisqali. It is available on the PBS scheme if it is first line treatment, so I have started a petition to get this changed. So I have been on Femara since October last year with fantastic results. I am wondering if there is anyone on this thread who is on this combo as a second line of treatment and how you are going? My oncologist has recommended that I add Kisqali to it and I am waiting to hear back from him as he is contacting Novartis to see if I qualify under compassionate grounds. thank you.
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Odom's mom, I got a good year on Afinitor and Faslodex, which is standard, if that helps any
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hi Mandy, welcome to the group. I'm sorry it's not available for you. Always wondered how they define first line treatment, is it subjective to the onc? I read about the protest after my onc offered me. Good luck with norvatis!
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Hi Operahouse
Yes, I have a couple of petitions going. One is online and the other are paper ones. My local MP is going to present it to Parliament when they sit in February. I have oer 5000 online signatures and although my printed signatures only started last friday, people are so wonderful and in agreement.
Medicare would have a record of each drug that we are prescribed. Because I have had mets since May 2012 and i have been prescribed in this order since mets, Aromasin, then Xeloda, then Afinitor and Aromasin Combo, then Xeloda again, and last Fulvestrant since October. (I only have 2 more options left, so I really need this Kisqali as the trials have proven for second line treatment that the success rate is higher than for first line treatment). My onc is fighting for me under compassionate grounds. My chemo nurse wants to start a go fund me page. My local cancer support group wants to start fundraising for me, and even my 3 children want to help pay for the treatment. I refuse to take anyones money... we are so far behind the US and the UK and this needs to change. If you can help with my petition I would be happy to post them out to you with a stamped self addressed envelope. hugs
mandy
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Hi all,
Mandy, we really need to get this Kisqali thing happening for 2nd line treatment..Is there an on-line link to your petition? We need to get it out there on social media.
I have just got back from my onc after having all my yearly scans and tests last week. My bloods are normal, sugar is good, can’t measure my liver met it is so small and my ultra sound findings of left breast mass have gone from 28 x 27 x 67 to 17 x 11 x 16. I hope the Kisqali combo will keep working for me in 2019! The only real side FX I have is lethargy and an occasional hot flash.
NOT today Cancer!
Cheers,
Jackie
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hi all,
Jackie, happy for your results. I just finished first cycle and managed to keep SEs to minimum. Still a while to go before my next scan.
Mandy, I feel for you. We need to take actions before we run out of options. Who has that much money considering it could be a long term treatment. So sad it works this way. Let me know what I can do to help with your petition.
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Hi Jackie and operahouse, I can post the petitions to you or the online petition is on CHANGE.ORG. It asks for donations or to share on facebook, just skip that part or it may say no thanks. I am really also hoping from someone in UK or US that is on secondline treatment with this combo or for reaffirmation that it has been approved in those countries.
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Hey everyone, here is the petition link.. I have pasted it on twitter... would be really good if everyone got behind this and signed then posted the link on your social media sites
Cheers, Jackie
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Hello girls hope you are doing as well as can be. Welcome mandymoo.
Sorry to hear about your story I don't understand why isn't kisqali available for everyone. Good luck with Novartis. Reading your story that you're a long time metster gave me some hope that I may have a few years left in me. My onc not telling me much only that's its stage 4 mets to ribs and lung effusion. He said we can't cure it but we can manage it.
I finished taking the first 21 days of kisqali. I suffered a lot of rib pain and a strange pain hard to describe in the middle of the chest right above the stomach. That pain started after taking kisqali for about 14 days and it got worse every day. I was looking forward to yesterday the first day off kisqali but it was the worst day ever. It felt like an elephant standing on the bottom of my chest. And also my ribs hurt as if I had a belt around me that being tightened every 15 minutes. I took half an endone last night after I couldn't stand the pain. My temp was rising. I drank 50/50 lemon juice that we squeezed and water to take the temp down. It only went up to 37.9c and got it down to 37.6 when I went to bed. Had to wake up hourly to pee. Don't know if it was from the endone. This morning I felt like I've been through a wringer but surprisingly the pain in the middle of the chest was only about 3 compared to between 8 and 9 out of 10 last night. So I know it's one of kisqalis side effect that I haven't read about. This afternoon I could feel my temperature rising I drank lemon with water straight away. I hope I can get it down. It was 37.1c at 4pm and now 37.7c at 5.20pm. I guess more lemon juice. I also have flu like symptoms with very runny nose worst in the morning. I'm looking forward to tomorrow hoping to feel better.
This was not a whinge or a complaint I was simply reporting my journey on kisqali.
Cheers Samuka
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Samuka, my cardiologist and oncologist told me to call them immediately if I had chest pain. It is a side effect but one you need to report. Please do. J
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Samuka, please report this to your oncologist or go to ER when you get these pains. I struggled a lot when I was on Aromasin/Afinitor combo and I had a lot of gall stone attacks which caused me these terrible pains and also my gall bladder became quite inflamed. I did go to ER the first couple of times and it definitely was not my heart or lungs, and I learned to keep away from certain foods and I persisted.
Kangaroo, Thank you for putting the link up for me. I am not that computer savvy. My Federal Member of Parliament is taking my case to Parliament when it sits next month, although I doubt that much will get done, so I am persisting with my petitions both online and paper petitions. I am so lucky that my oncologist mentined this to me. Imagine all the other metster ladies who do not know about this combo in Australia or who dont understand?
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Hello everyone
Well what a day and night yesterday. Last night had to call an ambulance and I ended up in hospital. My temp went up to 39.6c and I couldn't bring it down. My pain was bad. I laid down and was freezing couldn't warm up having 3 blankets on and winter jamys. I was treated in the ambulance in my front yard with morphine and some panadol before taking me to hospital to bring the fever down. 3 hours later in the hospital my temp was still over 39c. I was put on antibiotics drip. They took heaps of blood for blood culture's and some other blood tests. That morphine worked its magic. They have admitted me in the ward today and have to stay for at least a couple of days to do more tests and until my white blood count goes back up. It went down to . 8 I'm on more antibiotics drips. They going to check my pancreas and gall bladder. The infection is put down to uti but not sure yet. Also going to do ultrasound. I'm scared to go back to kisqali next week but I also don't want to stop it if it helps with cancer. I though my rib pain is from cancer but it's more likely from kisqali.
Keep getting better girls. 😊
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my cardiologisted reminded my doctors not to use antibiotics that will cause QT since kisqali can cause that as a side effect. Sorry to be so anxious
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hi all,
Samuka, Sorry for the drama. Hope you will get well soon.
I'm on the break this week. But my wbc is too low, my onc requested another blood test tomorrow. They will let me know by Friday if I can continue next week. Any tips to increase wbc, ladies?
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Samuka, sending you gentle hugs... hope everything gets back to normal for you soon.
Operahouse..I eat about 1/4 cup of natural yoghurt and a piece of citrus daily and I think this helps with my wbc
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Samuka, sorry for your troubles. Sending positive and healing thoughts your way!
JoE- what is QT?
Operahouse- I'm on my last day of a two week break because my white count dropped too low. I'm staring my third cycle tomorrow but at a reduced amount. I'm going to be taking 400mg a day instead of 600mg. My MO was happy that we got two cycles in at 600mg and I have heard here that many people have had success on 400mg.
I'm anxious about having my scans on February 4 to see if this combo is working for me!
Cheers
Sherry
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Sherry, layman description, when you look at your EKG you see the four peaks and four short distances between each peak of the heart beat. The distance between each beat should be the same length. A long QT means that one of those is longer than the other 3 which can cause stroke or heart attack at the worst. Center chest pain can be a symptom. I didn't have heart problems before I started kisqali but I had a tendency to have chest pain due to stress and anxiety so I had many tests to check my heart and had to have a release from a cardiologist to be on the safe side.
Flip side-I had great success on kisqali and am on a break because stability in disease. However, I have onc appointment this morning to check my status along with zometo infusion. Sorta anxious since I know it can flare anytime.
Didn't mean to scare anyone but my doctors are supper cautious but they swear by kisqali for those who can tolerate it. I do too!!!!! Hugs J
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thanks for the info JoE, and good luck today! Sending positive vibes that your MRI results give you good news!
I have Zometa infusion tomorrow.
Cheer
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Jackie, thanks for the tips. I will give them a go.
Sherry, my onc said same thing about reducing the dosage if my wbc is too low.
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Hi Girls
I found a lump under my arm on the 22nd December holiday time for all Doctors. I went to my breast surgeon who did a FNA on it and told me it was lobular cancer in the skin . When the pathology came back it said it was suspicious of kidney cancer but breast cancer could be ruled out because of the lump location. I have been beside myself thinking I had metastatic kidney cancer as well as the breast, I had my kidney removed in Sept 2017 because of cancer . I had a GA and lumpectomy and after a month of anxiety results came back clear.
I find managing anxiety so difficult , the relief is unbelievable.
Thanks for listening Mandy
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Mandy- I'm so sorry you had to go through that but very happy for your good news! We do tend to live our lives in a constant state of fear and anxiety so when a good day comes I try to grab it and take full advantage! I find I'm still trying to find my new normal after this latest diagnosis
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hi all,
I'm ordering supplements. My onc said most supplements are fine, however it is a new drug, there is still unknowns. Has your doctor ever mentioned any supplements that we shouldn't take on this combo.
Thanks
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