I started out on Ibrance at 125. After a few months my neutrophils weren't terrible, but borderline. I convinced my oncologist to lower to 100. Now I am wondering if I have a chance to go to 75.
My only reasoning being my personal comfort, mostly hoping for less fatigue. My fatigue is tolerable, but I would love to have less, if possible. I am also thinking that maybe this is getting greedy as my cancer is stable and I am mostly doing what I want. I also wonder if there could also be the possibility of needing a reduction in the future for other reasons. I have seen some posts where people go to a lower dosage after years. It is so frustrating that they prescribe the highest tolerable instead of the lowest effective dose. When I first started the medication I asked the pharmacist about why I was starting with the highest instead of the lowest dose and they advised that the dosing is just personal preference of the prescriber.
Any thoughts would be appreciated.
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I started Ibrance 2.5 years ago at 125, then about 10 months ago I was lowered to 100. Now I am at 75. Not sure why they start so high but my WBC was low and now it’s almost back to normal. I’ve always been tired on all three doses and I guess that won’t change. Naps are good! Hope this helps? Hugs!!
I have done several combination. I started on 100 3w, Then 100 every 2 days, Then 75 3w, then a mix of 100 and 75, now I do 75 2weeks on 1 week off. I feel well and I pass my blood tests. My oncologist says it doesn't matter so much what the strength is as long as I don't have extra long gaps.
I feel the same way. I think if I had been on the lowest dose earlier, I would have been able to keep the schedule and then not had a recurrence. I had been on 125 for about 2 ½ yrs, then 100 for about 3 yrs, and now 75. We think (Dr and I) that because the 100 got too toxic and I had more than one week off several cycles, I had the recurrences. Now it’s nearly 6 ½ years altogether.
I was diagnosed highest and have been on that nearly four years. I thought higher meant it worked more aggressively. But luckily I haven't had too many issues. Good luck. X
I started on 125 but was reduced to 100 after just two courses - my neuts were very low on both the first two so I had to have an extra week off. Since being on 100 I've been fine as far as bloods are concerned. I do get very tired in the third week of pills and have started having things like oral thrush, small nosebleeds so I am going to flag these to the oncologist when I see him next. I have heard of people who've take a break from ibrance for a couple of months to build themselves up and then return to the regime.
I have taken several breaks, and did well. Most of my side effects leveled off after a few months, but would reoccur )although for not as long) when I started back up.
I have been on 125 for almost 3 and 1/2 years and have done well so there has not been any discussion about lowering the dose. I was told that dose was considered the standard of care. I have not had a lot of side effects but if a lower dose would be just as effective, I would be interested in that. Best wishes.
I went from 125 to 75 after being on 125 for only a couple of months. My neutraphylls and wbc just could not handle it and ended up in hospital. Even tried a lot of combinations on 75 before I could manage. I do rwo weeks on and two weeks off. Theresa
I was on 125 and I got mouth sores too , mine was lowered too 100 , I have had the odd white low white blood cells and meds delayed for a week a couple of times , but overall I am doing well I have been on it for almost 4 years , I have a scan every 3 months , I am due one 29 th April , so fingers crossed , all good ,
Started on Ibrance 175 back in Aug 2023, 1 month later moved down to 100 because of affect it had on my Blood and Hemoglobin, my neutrophils had gone from a 5,8 to now a 2.3. I'm also on Flurestrant injections once per month. My Tumors are shrinking and in some cases completely disappeared. Almost zero side effects other than some nausea maybe once every other month. I exercise daily, eat lots of protein and vegetables and take B 12 and Iron to try to keep my red and white blood cells in the positive range, but the Ibrance works to kill both good and bad blood cells to combat the cancer. I have stage 4 Met Breast cancer than has spread to the bones. So far so good in my 8th cycle, Prayers to all here for healing
I was prescribed 125 mg of Ibrance in 2019. After half a year, I had side effects, it was difficult for me to breathe and the nutraphils were low. My doctor reduced the dose by 100 and then by 75. There was Covid and they stopped my treatment. Then when we returned, I asked take the doctor off completely and try without it. After 4 years, I developed a metastasis in the liver and the doctor again prescribed 75 mg for me. Nutraphil 1 and sometimes a little higher, but no fatigue. I’m not very sure that Ibrance helps me, because City Scan showed a slight increase in met in the liver. We are waiting for the next city scan. Maybe my information will help you. Good luck!
I too was put on the highest dose , 125 mg. I felt let's go as aggressive as possible to kill those cancer demons. I experienced fatigue and low neutrophils and my white count. My oncologist told me it would be safe and not change the efficacy of the drug if we lowered it. We did, I am now on 100 mg and feel great. Fatigue hits now toward end of third week which is much more tolerable than the entire time. However, the $64,000 question still remains - why start us on the highest dose if the lowest works just as well. My answer - the higher dose costs more......
hope you consider lowering your dose, quality of life is so very important.
Great question, why start on highest dose and go down if problems develop? Why not start on lowest dose and move up? BestBird was working on this and making some headway.
My oncologist starts on the highest dose typically, unless there is a reason not to (started on reduced dose of 400 mg Kisqali because of concerns about effect on heart). But when I have a bad effect, she reduces the dose, saying there is no evidence that the higher dose is more effective!
I cut back to 100mg about a year ago with hopes to reduce fatigue. I hadn’t noticed any improvement until recently when my GP noticed my iron was a bit low. He suggested Iron Ferrous Sulfate 65mg which I can purchase over the counter. I have more energy and my finger nails are not brittle and cracking like before. The GP thought it might help with my severe muscle cramping too, but I don’t think so as yet. Start with a stool softener as it will constipate at first. Also it takes time before you will notice results. For me it was about 6 weeks in. I have been on Ibrance for almost 6 years with good scans for the last year or so. Breast cancer - lumpectomy no tolerance for Tomoxifen (sp) progression to bone Mets and then started Ibrance, faslodex and xgiva. I do wish I could find a solution for painful cramps and sciatica type pain which has developed. Magnesium helps only somewhat. Best wishes to you.
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