Kisqali/ribociclib, Faslodex/fluvestrant & Xgeva combo - Anyone?
Comments
-
tangandchris - your experience with your first faslodex shot reminded me of mine. It was the week I received the new diagnosis, and in order to get the faslodex injections, I had to go to the same infusion center where I had received chemo and rung that bell three years earlier. I was shaking and in tears. I was taken by such surprise by how being back there affected me. The poor nurse offered to wait, but I just wanted to get out of there.
Anyway, the injections I've had since then haven't been terrible. It was just the shock of everything. I hope things have gone better for your since.
0 -
Hello everyone, just checking in to see how you guys are (still!) doing on Kisqali? Holding steady? How’s everyone feeling? I finally got approved for K & starting soon. How quickly did you notice se? Thanks for any info. Trying to prepare myself for round 1…. x
0 -
Hello All,
New to this page. My name is Jane and I was dx'd with MBC about 6 weeks ago. I am on Faslodex and Kisqali.
I'm only at end of my second week of first cycle of Kisqali and side effects have not been too bad so far. Some nausea but not terrible, right after I take it (I've been taking in eve after dinner). The nausea passes in about 20 mins or so. I was definitely interested in hearing others report that fatigue can build once into the third week, so we'll see how that goes. I'm def very tired early in the evening but I've never been a night owl anyway, lol. I was at the beach this week and my skin is definitely more prone to burning now and I also got some skin rash after being in the sun. Shade it will be for me from now on!
The Faslodex butt pain has been a bit of a problem so I will def try that massaging and walking right after the injections that was recommended - thank you. It's been super hot here in NJ so the hot flashes have not been fun!
All this being said, I'm finding the se's manageable so far. But of course it's all still new to me!
Looking forward to sharing and learning together.
Jane
0 -
Hi Jane!
So glad you’ve joined this thread. We are on similar timelines (same dx timing) but I haven’t started K yet. Still working through the insurance process. I will hopefully start next week. I will also be at the beach so Ill be very careful in the sun! Thanks for the warning.I’m getting my 2nd round of Faslodex tomorrow. I was very sore the first time. The nurse put the shots in my hips which (I’ve read) is the safer area in order to avoid aggravating your sciatic nerves. Also to warm up the “syrup” & have the nurse inject it very slowly. I’m going to follow this advice tomorrow & hope for less soreness.
Good luck on this treatment & keep us updated. I’ll do the same.You might want to fill out your profile so we’ll understand your dx better. The ladies on these threads are a wealth of support & information!!
0 -
Hi NCYogi-
I didn't even know there was a profile to fill out lol so will do so now. Glad to connect with you and others here!
Jane
0 -
Hi Jane,
Just checking in to see how you’re doing? I started Kisqali & so far I’m fine but it’s only been a few days! Hope you (& everyone else) is doing well. x
0 -
Hi all,
Thanks for checking in NCYogi. I'm literally just about to take my last dose of Kisqali for this first 21 day cycle. Feeling well overall - just tired by around 6 pm (now lol) and still some skin rash. My MO told me I could take an over the counter antihistamine for the rash and that seems to be helping. Hope Kisqali goes smoothly for you - overall I can't really complain about it!
Jane
0 -
Hello everyone
On no my 3rd round of faslodex added kisqali 3 pills 600mg today reading up on your posts
Just wondering how everyone is doing have many people had this combo shrink Mets
Hope you are all doing well
0 -
Hi Beth! I’m on my 3rd cycle but haven’t had scans yet so I’m not sure about effectiveness (yet). I can tell you that my breast tumor (large!) has shrunk a lot because I can barely feel it & it WAS big & hard. My SE have been minimal so far. I’ll let you know after my scan. Fingers crossed for all of us
0 -
Hi Yogi nice to meet someone else on it
Just the fact your time has shrunk is great news I am so happy for you
So far not much SE. either I’ve just had some heartburn and trouble sleeping so I think I will stop taking in evening and take maybe at lunch Just wondering what time you take yours
Yes please keep posted about your scans very appreciated
I’m feeling hopeful for you
0 -
I've been on this combo about six months. At my first set of scans, the mets on my liver had reduced by 50%. No change to the tumor in my armpit. I've got my next set of scans in about two weeks. I have not had bad side effects except in the last month or so I've started getting joint pain from the faslodex. My family took a trip to Disneyworld earlier this month and by the third day I had to rent a scooter because the pain from walking all day was keeping me from enjoying the trip. I felt bad about that, but the scooter really helped. I generally take my meds at night with a protein shake, then follow them up with a dose of medical THC (cannabis tincture). The THC helps me sleep and reduces nausea.
I'm also on a whole stack of supplements prescribed by a integrative medicine doctor with a background in oncology. I think they help with the side effects. I only really started noticing the joint pain when I let some of the more expensive supplements run out.
0 -
Nola wow 50% that’s a huge amount of gone from your liver. Im very impressed sounds like it’s really working for you. Hopefully next scan shows improvement in your other areas
I am hoping to add canibis oil into my mix once settled in on other drugs so maybe will help me with any upcoming SE
Glad you were able to get scooter to finish enjoying your trip Thanks much for sharing
0 -
Hi again, I take my pills with dinner to avoid nausea. I’m not sleeping great but I blame that on my sudden menopause (oopherectomy) & faslodex. 🤷🏻♀️ Hot flashes wake me up nightly. I’m going to try acupuncture & see if that helps. What cannibis do you use? Thc is illegal in NC & I haven’t investigated the medicinal route yet. Any advice is welcome!
0 -
yogi- sudden menopause sucks they did it with me in beginning of treatment. But a few of. My friends said my major symptoms with it were shorter than they had doing it regular so maybe that’s something good out of it.
Would love to know if acupuncture helps I am so curious.
0 -
I'm currently on this regimen. I'm on Xgeva as of 3 months ago, added late. I was searching for Xgeva info, but I'm not seeing much here.
I had my 3rd shot today and by the time I got home I felt completely wiped out. Surprisingly because I didn't notice this the other 2 times.
Do yall notice Xgeva adding fatigue? Of course I was told this drug has minimal se's lol. Don't they always say this?
0 -
Hello, starting Kisqali, Exemestane, Lupron and Xgeva tomorrow. Wondering if anyone is still on Kisqali on this thread and how are se? What to expeft
0 -
Same, I am switching to Kisqali, will also be on Lupron and Arimidex. Am curious how people are doing and what to expect as well? Thanks!
1 -
Hello, I’m on Kisqali/Faslodex/Xgeva combo. Started in November of 2023. SEs include hair thinning, some queasiness (mostly in am), skin rash with stinging and itching (medical team said to take Zyrtec and Pepcid and prescribed a steroid cream that cleared up the rash, but still have itching that’s worse at night so I take the Zyrtec & Pepcid and helps some. Have experienced some constipation as well as some diarrhea (I have a pretty sensitive GI system anyway). Metumcil and colase daily helps tremendously;. In the beginning I had loss of appetite. It’s better now, but mornings are rough. Food seems unappealing but I do eat because I know it’s necessary. Also has affected my taste, but that gets better on my “off week” of Kisqali. I take the Kisqali in the morning (eat breakfast first). Has anyone else experienced feeling blah, queasy, a mild malaise in the morning that usually goes away by noon? Just wondering if it’s the timing of taking Kisqali.
0 -
Hi Everyone
I have been reading and posting on this site for almost 2 years and don't know how I missed this thread.
I have been on Kisqali/faslodex/Xgeva since August 2022. Started at 600 mg Kisqali, quickly dropped to 400 mg because of GI issues. Have noticed hair thinning, milder GI issues and occasional fatigue, but still manage to live a fairly normal life. My scans 10 days ago were stable, so I have a reprieve until July unless something shows up in my monthly blood work. I find taking Kisqali after dinner works best for me.
My mets are bone only. I do have bone pain and joint stiffness, but I have quite a bit of arthritis and I think the faslodex aggravates that.
I feel fortunate that cancer didn't strike until I had retired and my children were grown, so I don't have the stress of work and child-rearing.
I hope that this combo gives each of us a long run!
Eleanora
0 -
Hi!
I just finished my third cycle with Kisqali (fourth Faslodex). I started with Zoladex a few weeks ago. My side effects have been mild GI issues, dry eyes and feeling a bit tired. The last Faslodex injections caused more pain that lasted longer but I think the nurse did not to it the right way. I am having my first scan in two weeks. My treatment is based on my first diagnosis in 2014. I only have sclerotic bone mets which makes it hard to biopsy. My biopsy did not have any tissue to analyze and my doctor do not think we should try again. I have asked for a second opinion. So a bit worried.
0 -
I have just begun my 4th cycle of kisqali/femara. Like @mimmi7, I only have sclerotic bone mets which makes it difficult to measure during a short period of time whether the drugs are effective. My tumour markers are down to normal levels and ALP levels only just outside normal levels. I have been extremely lucky with side-effects. My body seems to be working through the list of them, but I only ever seem to have most of them for 2 days. Even the hot flashes have stopped and the excessive sweating has greatly reduced. Minimal joint pain, but I am exercising daily and on an anti-inflammatory diet. I have scans on 8 Feb and MO appointment on 12 Feb so maybe will find something out then. I am very happy MO doesn't want to do biopsy at the moment. But she changes her mind about a lot of things. 😖
0 -
Hi everyone. Just wanted to introduce myself having just being DX with liver mets. I have had several recurrences prior to this DX so not surprised to find myself here. I am hoping the side effects from this combo won’t be like the chemo I have had in the past. Fingers crossed.
I have used these forums several times in the past and found them very supportive. My liver Met is currently 30mm so hoping this combo will get it under control.Have a good day everyone 😀
1 -
Hi everyone, just coming on here to say hello to everyone. I'm on day 6 of my first cycle of Kisqala and feeling bleh. The first time I felt nauseous was at lunch time yesterday and I took some cyclizine. I was zonked for the rest of the day though I was able to eat dinner. Today felt nauseous again at lunchtime but decided to take nothing and couldn't eat this evening because of nausea. I've just taken another cyclizine but I'll be out for the count for the rest of the night. What do you all take for nausea and is there a med that doesn't make you very sleepy? Thanks and hugs to everyone x
0 -
Hi,
I’m on my 5th cycle of Kisqali and I remember my first cycle being fairly rough. Like you, I felt bleh, no appetite and nauseated right before meals (which made the no appetite situation worse). What works for me is Zofran. After the first cycle the nausea was very infrequent, thank goodness, and my energy level improved. I hope for the same with you. What I’m dealing with this cycle is a itchy rash that expanded from my chest and back to my face. Some hair thinning started pretty early on too.
0 -
Hi @colibri_girl , I asked my gp today for a px for zofran, as you have to leave 8 hours between valoid doses, but she said zofran's ultra strong and only for people on chemo and gave me px for stematil instead. I'll try it but I'm really struggling with loss of appetite and nausea. To crown it all I was minding my adorable grandson (patient zero) for the weekend and we've all come down with a chest infection so I'm also on antibiotics now. I think I'd rattle if you shook me! I have a bad pain in my right hand side below my ribs but doc says it's not my liver tg. I'm having my 2nd ECG on Wed together with my bloods so hopefully all will be well xx
0 -
Hi aoibheann,
Interesting info from your gp. I never felt any effect from the Zofran (other than the positive effect of eliminating my nausea). I did take it steadily during my worst days of chemo with my first diagnosis 5 years ago. Again, not adverse effects. But obviously you want to follow your gp’s advice. Do you have an oncologist? If so, I’d ask them.
Hope you get though the chest infection quickly. As a famous comedienne, Gilda Radha, as her Rosanne Rosannadanna character once said “it’s always something.” That is is. Be well.
0 -
Hi everyone. Anybody else have trouble with their WBC at the beginning? I had to delay starting my second cycle because of my WBC. Now after two weeks of Kisqali my WBC has plunged again and I have to stop for a week and then have another blood test.
I am feeling pretty demoralised at this point :(
Cathy
0 -
My WBC and neutraphils plummeted with my first cycle of Kisqali. However they came back to a safer level with a week and have been stable. My body adjusted, I assume. I hope yours will too.
0 -
I am on my 6th cycle of kisqali. My neutrophils got down to 1.2 but now are stable at 1.9. Touch wood - I have been lucky with the side effects from kisqali - my body has adjusted fairly quickly.
0 -
I seem to be getting a slight fever about an hour after I take Kisqali in the evening which is a little concerning. Fever is listed as a side effect, has this happened to anyone else? It could also be the paracetemol I took.
0
