Week off of ibrance

[marianne88]

Hi ladies. Just wondering if anyone else feels More crappy on week off of ibrance. I also have a lot more joint pain everywhere. It always scares me. Thanks. Marianne from Boston

[TE53_67]

Yes I do per se. The first week on, I could jump over a five bar gate ! Then second week I get tired and the third alittle more tired. The two weeks off( due to low neuts) I feel sluggish and the pains start. Unsure why, but not worried. The official tests are the measurement always x

[GollyG]

Yes, I do. I put it down to body recovering from the drug, bone marrow producing more neutrophils. I don't know if I was ever told this, but it's a comfort.

[U2Rocks]

Yes I do too. And the body aches are everywhere. I can’t do as much as I use to in the afternoons mostly due to achy joints but also more tired.

[Mimiholl]

Morning, Yes the same for me . As the days continue more aches and pains. I am having knee replacement in 10 days so I had to go off Ibrance . I have been off it 2 weeks now and can notice the difference. I will go back on it after surgery, but not sure of date. I did not have to go off letrozole. The reason for withholding Ibrance , is that it lowers immune system which would increase my risk of infection. I was worried they would take me off letrozole , but thank goodness no. I will be on anticoagulants to prevent blood clots which can increase because of letrozole.

🙏Marianne from Raleigh (Mimi)

[Suzierox]

I honestly don't notice a difference, however, I am on the lowest dose @ 75mg. I was taken off for three weeks in preparation for a cruise to build up wbc. Back on for two and half months and off again for two weeks for low neutrophils. During that time, I still got Faslodex shots. With all the stops and starts, I can't say as I've noticed anything more than my standard aches and belly issues. Hope you feel better soon 🙏

[Hidden in reply to Suzierox]

Belly ..lol ..l never had one before nowIt's annoying...one day flat next l look 6 months pregnant...l don't like it .

Oh well...loose tops

[Tolife_18]

Hi Marianne, I’m almost 2 years on the same Ibrance/Letrozole regimen and hope to continue. 🤞At the beginning, I felt worse at the week off. It’s likely due to blood counts being the lowest at this point. I see mostly no difference know.

In terms of the joints aches, try drinking tart cherry juice. It’s somehow helps and I like the taste when mixing with seltzer. I buy it in Trader Joe - organic, no sugar added, not from concentrate.

No harm done even if it won’t help.

Wishing you the best!

[NShaft in reply to Tolife_18]

I take tart cherry capsules and believe it helps with the aches. When I run out and don't reorder right away because I think it's really not doing anything I can feel the aches start up again.

[Tolife_18 in reply to NShaft]

Thank you for letting me know about capsules. How many a day do you take?

[NShaft in reply to Tolife_18]

I take one a day. I can't remember the dosage but I avoid the super ones like 5,000-10,000. Maybe 500 mg?

[bracelets1]

Hi Marianne- I am 4 months into Ibrance/Letrozole combo. I haven't noticed a pattern yet, or maybe I just don't have one because I am trying to be aware, since I have read here that some notice a difference between weeks on and weeks off. But, no matter on or off, my joint pain is pretty constant. An occasional day of it not being as bad as another. And again, not so bad that it stops me from doing most things, but it can slow me down a bit. My onc allows me to take 7.5mg of Mobic (meloxicam is the generic name). This seems to help me a lot. You could check it out and see if you have any conditions that would prohibit you from taking it. And yes, all pains worry the heck out of me too! I break a toe nail and I get scared

🤣 Michelle from Louisiana

[Eliactida1955]

When I was on it, I took it about 3 years and that week I was off I felt better off of it. I wish I could go back as on affinitor and aromas in makes me nauseous at time but I really think it’s the letrozole that made me weak while I was on Ibrance. Hang I there!🙏✝️🌹

[BritSammy]

Absolutely feel worse. I am so tired have upset stomach, constipation etc. the first week back on I could go ten rounds with Mike Tyson😳🤣

[PreciousPete]

I was originally on Ibrance until I was switched over to Kisqali…..very close to the same medication and taken the same way with a week off. My oncologist recommended taking non drowsy Claritin to help with bone pain, which I take along with prescribed pain medication. It’s been shown that the antihistamine has anti-inflammatory properties in it. I take 2 pills every day…..for bone pain the dosage can be anywhere from 1 to 4 pills daily.Speak to your oncologist about Claritin…..I’ve been taking it now for a few years and my oncologist is the head of oncology. Sending positive vibes your way!

[JeniMcC]

Hi Marianne 88, My joints feel worse on my week off as well. My hands swell, my knees hurt, and it’s harder to recover from exercise because my joints get so swollen. It doesn’t deter me from doing it, but it’s always a surprise. You’d think after two years that I’d be used to it! Ibuprofen does help, if I remember to take it. Swimming also helps a lot. I’ve gotten to the point where I look forward to my first week back on Ibrance. The joint pain almost immediately subsides. My oncologist says it’s definitely the Letrozole that causes the joint pain, but since I’m so stable, I don’t want to change to a different hormone blocker.

[Fiercefighter13]

I was on Ibrance 100 mg/Letrozole for almost 3 years, and I always felt unwell on my week off of Ibrance. It was always curious and strange to me feeling that way because I "expected" I would rebound and feel better on my week off. I was neutropenic on Ibrance, but outside of that, I never had side effects that I could quantify with words, just felt really unwell on the week off. My markers started going up for the last year and a half, but my scans were NED. I finally asked my doctor to switch me to Verzenio, which I started a month ago, and I have felt so well since I started Verzenio, it's hard to explain, but I think I got used to not feeling well on Ibrance and didn't notice the subtle unwell feeling I was having. I don't know if Verzenio will ultimately make me feel the same unwell sensation with time, but for now, I feel so much better......the fatigue is gone, the distaste for foods are gone, and I just feel really good.

[Totheriver]

I am also on ibrance and letrozole and feel lousy on my second week off. I am 2 weeks on and 2 weeks off. I have a lot of nausea starting midweek of my first week off. Wondering if anyone else has this and what they take for it. Thanks, Theresa

[Timtam56 in reply to Totheriver]

Thank goodness (or thank the great cosmic jester). I have never felt nausea on my ibrance, letrazole/anastrozole meds. But I get awful headaches. Aching joints. Really dry skin/extremities of feet and hands. Sometime I think I'd be better of not here, it's really that bad. But. Then I cone out of my slump and am thankful for still being alive.

Crazy huh?

[goat2017]

When I was on Ibrance I took it everyday and really didn't have many side effects. I am now taking a different medicine . One week on an one week off. More fatigue and some body aches. Ibrance worked for over a year then stopped. The meds I am taking are working but with more side effects. I don't mind the side effects as long as the medicine is doing it's job. Good luck and best wishes.

[Aquamoron]

Absolutely. Although I’m only on my 8th cycle and each one feels slightly different the week off is typically my ‘slow week where I try to just ramp down and rest and stretch more often.

[Hidden]

Hi ..l feel the same no difference.I just keep my body moving

It helps..My work l walk 8 hrs a day

Picking g orders ...l like my work place

No time to think

its when l go back on for 3 days night sweats heavy ..then gone...100mg ibrance..with letrozole Lower back pain most of the time

I work..excersise...l just don't think about it...if feels bad half tylone 30mg

Doctor gave me 20 mins later

Hello lol no pain

Hugs ..Enjoy life..Smile

[mudakurag]

Because I don't keep super records handy I don't know when I have more pain , but it sure seems like it is often times on the week I am off ibrance. My fatigue level is is so bad at times I just want to take naps and lie down all day long. Im often very tired on and off Ibrance.Im also on Letrozole and thought that was the cause of my increasing joint pain . But my doctor said I should try staying off it for a week or two , the letrozole , and I didn't feel any relief from the joint pain .I haven't figured out what the pattern for the fatigue is or if there is one. I've been on ibrance for 4 years. When I tell my doctor about the extreme fatigue I experience frequently , she really has no replyMary

[Timtam56]

Yes. That's why we are taken off it.

It has built up over the 3 weeks, and our bodies need a break from it and we are usually nuetropaenic. Then if your bloods are okay you'll get the go-ahead to go back on it. That's my understanding anyway.

Ps. I've been on this 1st line of treatment for 4 years now. 👍👏👏👏👍

[AuntC]

After two years on the recommended does of Ibrance, 3 weeks on 1 week off, my onc changed it to 2 on & 2 off. My WBC stays good & neutros stay within normal range. And best of all, I'm stable. I feel good most of the time now except for a little fatigue once in a while. But it could be my age, I'm almost 76. The only time I feel bad is after my Zometa infusion & I only get that every 3 months. So I guess I'm feeling blessed.