Tiredness and dose reduction kisqali
hey everyone.
my first post. I am 18 months into treatment with stage 4 in bones. Ive had a couple late starts on treatment due to neutropenia and a gross gastric event shall we call it.
anyone else really tired sometimes on this stuff??
I’m lucky fortunate to have stability on this stuff and very grateful for that but it really is pretty knackering in comparison to what I used to have energy wise. It might also be the cancer and the letrozole. Anyone done a dose reduction for tiredness? My primary onc says don’t do that so I am loathed to go against what she says. A second opinion Onc at Marsden says try it.
Would love to hear any og your thoughts. Sending you all a tonne of love and light on what is sometimes a hard and heavy ride. We got this… sometimes and it’s ok to fall apart too but let’s keep going is todays vibe xxxx thanks you all. 😘😘
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@dangermousexl I am only a few months into my kisqali treatment so I am not an og by any means. But, I was just talking to my onc about fatigue. It’s likely a combination of things for me. I finished radiation about 3 weeks ago and I haven’t been regularly exercising since because it wiped me out. So my onc and I discussed regular exercise and maybe acupuncture. But, she said if next month when I see her, I’m still feeling it, she would try a dose reduction. It wasn’t her first recommendation and I didn’t bring it up but, for what it’s worth, it was definitely on her short list of remedies.
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thanks xx helpful to hear someone else’s experience. I’ve not had radiation yet. I’ve had a few times of low white blood cells at end of each cycle now and I think Onc holding onto max dose as it’s working and stable so I see the point. Also interesting the breast nurse said maybe try not taking letrozole for 6 weeks is an option..
I’m very cautious of not taking medication that’s working but then being fatigued to the max is also pretty rough so will see what happens this cycle and take a view. Thanks so much for your reply. Good to hear someone else’s experience and sending you very best xx
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also og was supposed to be of!! Xxxxx
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I have mets in my bones, liver, lungs and right eye. Unfortunately my mets were only discovered 8 months after my first symptom—pain in my right humerus bone. It was misdiagnosed as tendinitis, mild arthritis and also frozen shoulder until a trip to my optometrist in January 2026 (due to strange flashes in my eye) discovered the cancer. I completed 10 rounds of radiation on my humerus, right pubic bone, sternum and eye in the third week of February 2026. The rads to the pubic bone caused severe nausea and loss of appetite, and of course the overall fatigue was debilitating. I started on Kisqali/Fulvestrant only three weeks after completing radiation and at the two week period I became debilitatingly ill. Extreme nausea and heartburn, throwing up, etc. I stopped the Kisqali cycle 4 four days sooner as I couldn't even get fluids down I was so sick. Ended up in the ER to have 3 litres of saline pumped into me, but even a week later, while I can eat and drink again, I'm still weak. I'm seeing the onc on Monday and I've already told her secretary that I don't know if I can continue, but I'm willing to if they reduce my dose and give me some more time to recover from radiation and my low blood counts before restarting Kisqali/fulvestrant.
Has anyone else experienced such severe symptoms on this protocol that resolved with a dose reduction?
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I am about to start Kisqali and anastrazole. I note in the literature that it says to take them at the same time every day. Just wondering if it is better to take in the morning or at night. Option is also with food/without food. Make a difference? This is the start of my 6th regimen.
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Hi @fred_ginger
Thank you for joining the community boards and for sharing your question. Taking Kisqali and Anastrozole at the same time each day can be helpful, not only so you remember to take them, but also to help keep medication levels steady.
As for the best time to take them, it often depends on how you feel and what side effects you may experience. Some people prefer taking them in the morning, especially if they notice trouble sleeping. Others may choose evening if they experience nausea and prefer to sleep through it.
Both medications can generally be taken with or without food, though some people find taking them with food helps if they have an upset stomach.
The most important thing is choosing a time you can be consistent with. If side effects come up, your oncology team can help you adjust timing if needed.
Hope this helps. 💗
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Began taking 600 mg of kisqali and 1 mg of anastrozole on the 11th of May. Sailed through the first week with apparently no side effects. I take it every morning with breakfast—have to take it with food as the Kisqula pills are large and I have difficulty swallowing it. But food pushes it down. I am now on day 10 of 21 and have noticed the past few days that the fatigue has set in. Went back to bed after breakfast and stayed there another 5 hours. I am taking liquid Tylenol for joint pains, sore throat, and low grade headache which eliminates those issues.
I had read on some post how important exercise is when dealing with these drugs. I try to go to the gym 5 days a week for one-hour classes. I missed two days this week due to appointments and today I was just too tired. Hopefully I can get the ball rolling tomorrow!!
I really appreciate reading how everyone else is coping. We are certainly all in this together.
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@fred_ginger The side effects start to diminish with time, I found, so you might want to give it a few more months. This is all pretty new, and maybe you are just feeling the effects of exercise. Exercise will definitely help with the joint pain and fatigue as you get used to these powerful drugs. I guess I'd say give it some time.
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Good morning all. Just saw this thread and wanted to add my experience in case it's helpful.
Diagnosed Stage IV in May, 2022, with mets to right pelvis and clivus bone in the skull. 10 rounds of SBRT to both areas, then after a 1 month recovery period, began Kisqali at 600 mg along with Fulvestrant. Initial side effects were so brutal that Kisqali was stopped for 10 days and then resumed at 400 mg. Side effects (nausea, diarrhea, extreme fatigue, intestinal cramping) were still pretty difficult, and MO prescribed bentyl (common medication for IBS) as a rescue med when the cramping pain was intense. Took about 3 months for my body to adjust and while I still have side effects, they are generally manageable as TOC noted above. There are many studies indicating that 400 mg is just as effective as 600 mg. For the past 12 months I have felt worsening fatigue/exhaustion and nagged MO until she ordered iron tests. She prescribed monthly iron infusions and B12 injections, as well as oral B12 daily. Started to feel improvement after about 6 weeks.
Throughout all of this my QOL has ranged from good to very good. At almost 76, I'm able to perform all the tasks of daily living, exercise regularly, garden, travel, and most importantly, play with and help care for my grandchildren. I am very thankful that Kisqali/fulvestrant/xgeva has lasted 4 years so far, as studies indicate that the longer you can persevere with first line treatment, the better success you will have with subsequent lines.
No one else can live in your body and experience your side effects. What I wanted to convey is that, from my perspective 4 years along the road you're travelling, the struggle to stick with it has definitely been worth it.
I wish you reduced SEs, improved energy and clear scans.
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Hi All! I'm new here as well and would love to share what I've learnt over the years.
Fatigue on Kisqali is really common and you are far from alone in that. The neutropenia-related dose delays can themselves leave the body playing catch-up, and when the bone marrow is working harder to recover, exhaustion tends to pile on top of whatever the drug itself is doing. Some people find the fatigue shifts a bit once their counts stabilize between cycles, others notice it stays pretty consistent throughout.
A few things that tend to come up in these conversations: tracking when in your cycle the tiredness peaks can be useful information for your team, and distinguishing between "I need rest" fatigue versus something that feels more like breathlessness or heaviness worth flagging sooner. Your oncologist has likely seen the full range of how this plays out and can look at your counts alongside how you're feeling.
You mentioned a gross gastric event too. If nausea is still layering onto the tiredness, that combination can really grind a person down.
Wishing you all the best!
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Hi and welcome @flipster and thank you for jumping in to support others already. You shared this in such a thoughtful, compassionate way, and we know it will help people feel less alone. Fatigue on Kisqali can really wear people down, especially when low counts, delays, and nausea all start piling on at once. We especially appreciated your reminder to notice patterns and keep the care team in the loop about how things are feeling day to day. Sometimes just hearing “yes, this happens to others too” can be such a comfort. We’re really glad you’re here and hope you’ll keep sharing your experiences with the community. 💗
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Thank you for all your comments. Really helps when I am new to this regimen. After dragging around all week, I began to pick it up on Thursday: went to water aerobics, did an hour at my VA volunteer job, and a little grocery shopping. Friday I took a friend to her doctor's appointment and we went out to breakfast. Yesterday, I managed about an hour of gardening and today another hour. Instead of fatigue, I've noticed that I'm tired but don't sleep all day because of it. I am able to sit and read, work on the computer or watch TV. I would say that is progress. I begin the third week of the first round tomorrow. Will see if side effects (joint pain, low grade headache and tiredness after exercise) diminish some more. I see my oncologist after the second round. Plan to continue 600mg/day for the second round. I do keep a journal almost daily to track how I feel.
BTW Fred and Ginger are my 16 year old cats. I am working hard to outlive them!! So far, they are doing great.
Onward and upward. Kate
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