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marianne88 profile image
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Hi. Does anyone have awful fatigue the week off of ibrance and more joint pain. Thanks. Marianne

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nstonerocks profile image
nstonerocks

Hi Marianne

Fatigue doesn’t seem to have a strict pattern with me. I go off Ibrance next week and I am just dragging today. My bones feel like jello. I did have a busy day yesterday but this is extreme physical fatigue. Some months I don’t feel it. I’ll get labs Monday. It will be interesting to see the results. Juicing helps.

nstonerocks profile image
nstonerocks

Oh and as far as joint pain, yes in left hip and feet. But I thought that was probably the letrozole.

Snowcone16 profile image
Snowcone16 in reply to nstonerocks

I get pain in my feet too. Specifically the top of my feet can hurt or be extremely sensitive if I bump into anything. I’m still trying to figure what is meant by joint pain. I get overall stiff. Maybe I’m sore in morning. But my most recent is like a 2x2 inch square on my back rib cage. Tender to touch and if I lay on it.

blms profile image
blms in reply to Snowcone16

Look into a very good VIT B

Snowcone16 profile image
Snowcone16 in reply to blms

Yes, I’m definitely going to try B.

blms profile image
blms in reply to Snowcone16

ask him about b12 shot or just your GP

Bluebird77 profile image
Bluebird77

Yes but for me it's worse the last few days of the Ibrance, and the week off I feel better.

Teddielottie profile image
Teddielottie in reply to Bluebird77

Same x

Snowcone16 profile image
Snowcone16

I’m just a couple days into 4th cycle. I think my last 2 cycles, the fatigue came in the first week of starting. Although I know I’ve had other symptoms in my off week - nausea. I’m trying to find the pattern too. So far at 3 days in this cycle, I’m still feeling good energy.

I take iron supplements. They initially helped me immediately. In the past 90 days, I’d say I had 5 extreme fatigue days. 1-2 of them were from a cold though.

Ps-I take Ibrance anywhere from 4-7 pm

blms profile image
blms in reply to Snowcone16

Get your B12 drawn from your primary. It may be that, not iron.

Snowcone16 profile image
Snowcone16 in reply to blms

You’re right. I don’t supplement with B so it could be the missing link. Been reading good information on B17 benefits in one of my books.

Iron looked good Tuesday and so far today, feel normal. Maybe a midday green tea or coffee...

❤️

blms profile image
blms in reply to Snowcone16

Also what I found to be extremely beneficial was a B 12 shot once a month. It really does help you with energy and makes you feel much better. That of course is not going to give you the other day vitamins but if you take of good quality be vitamin that doesn’t upset your stomach and I can send you the name of mine, and a B 12 shot you’re probably staying in range. I wound up taking methyl folate in addition to the B 12 shot which turns into B 12 and at my B 12 got a little bit too high so I had to wait a whole month and have it rechecked again early August. So I would’ve been better with just the multi be on the B 12 shotguns

blms profile image
blms in reply to blms

I also read from someone that did the coffee enemas that when they mixed the coffee with water or whatever you use it with at one point they put too much coffee I made them very hyper. Chris were always so tired I’m not sure that would work. But I am very sensitive to caffeine so I would do a very weak it and I don’t drink coffee at all so I would do a very weakened Formulabut I haven’t tried it yet.I’m using voice recognition for my texting so excuse the spelling is N the lack of punctuation wherever indicated

blms profile image
blms in reply to blms

I have never taken iron supplements or even multi with iron when I used to take multi vitamins. Iron really upsets my stomach and was hard on my liver. I actually got jaudice. B12 shots ar really nice and unless you are anemic I would not take iron.

Snowcone16 profile image
Snowcone16 in reply to blms

Was directed by my oncologist to take the iron because I was anemic. But my ferritin level seems ok but some of the blood reports I read mentioned macrocytic and microcytic blood cells. I guess they are different shapes from what I googled. Said it usually indicates anemia.

blms profile image
blms in reply to Snowcone16

Yes, I have the same problem but have been told by my oncologist and other doctors that the MCV and MCH are both larger red cells because of the Ibrance. Yes, it is a form of anemia but I am not, as yet, anemic. The red cells are under attack as well as the white in the bone marrow and this is their way of surviving by enlarging. I was very distraught when I first saw mine but a bit more relaxed now--if there is such a thing!! How high have yours gotten? Mine are slightly high but I still don't like it. Although my other red counts are fine at t his point. Did your oncologist say it was because of those counts or other red blood work?

blms profile image
blms in reply to blms

Maybe you can also take b12 shots.

Crazydentist profile image
Crazydentist in reply to blms

Hi

My red cells are larger..and my haemaglobin was low

My onc prescribed B12 and folic acid tablets and haemaglobin has gone up a bit..obv it’s the Ibrance..ugh

Barb xx

blms profile image
blms in reply to Crazydentist

Yes the MCV and MCH both get larger as they fight to survive from the Ibrance attack.

HopeinNJ profile image
HopeinNJ

My last week on and week off I have increased fatigue. I have aches and pains I attribute to Letrozole. All in all both are well tolerated considering the job they are doing. ❤️

blms profile image
blms in reply to HopeinNJ

do you take a iipid reducer?

HopeinNJ profile image
HopeinNJ in reply to blms

Actually I do. I take Crestor. I took that for years before my MBC diagnosis. The Letrozole has actually increased my blood pressure and cholesterol. I have had to add Blood pressure meds to my list of meds.

blms profile image
blms in reply to HopeinNJ

I can tell you that Crestor, as well as others, creates a lot of joint and bone pain. I stopped taking mine as there is NO evidence that it stops heart attacks when your cholesterol is lowered. I did change my diet and my levels went down. All joint and bone pain stopped after stopping my crestor. several doctors told me that was creating my pain and they were right. Think about it. I honestly do not think it is letrozole. I do not miss a day of letrozole although I have missed my Ibrance.

HopeinNJ profile image
HopeinNJ in reply to blms

Thanks. My cholesterol is familiar diet helps some but not enough. I need to definitely be more restrictive though.

blms profile image
blms in reply to HopeinNJ

Yep so is mine but when I went green and cabbage type diet and eliminated wheat and sugar, meat and eating a little only of wild fish only//my cholesterol dropped 100 points. So I now tell doctors not to tell me that I can’t do anything for that family curse!

With that said, I do cheat and eat some if those old good foods and my numbers go up but still about 70 points lower than they used to be. So I’ll take that! Plus Prolia raises cholesterol so that doesn’t help! Intermittent fasting also is helpful!

Oh to envy those days before 45 when I could eat all day and not gain a pound!

Cshipley123 profile image
Cshipley123

Hi! My fatigue hits the week I’m off too. Ususally day 3. Although I have an everyday tiredness always. I’m on my 7th round of ibrance. Best wishes coming your way!

Latina317 profile image
Latina317

Yes I’m exhausted during my 7days off

barbarac76 profile image
barbarac76

Yes, the fatigue sets in for me on my week off. I was told it is because of the buildup of the ibrance in our body.

Epinto profile image
Epinto

Hi marianne88. How r u doing? I have been on the faslodex and ibrance for 26 months now and grateful!!! Yes I get tired toward the last week and sometimes the week off. If I do too much which I usually do, I am wiped out and look awful too! Going for pet scan in the beginning of August and praying that there is nothing new. Be well!

equavel profile image
equavel

I suspect that I have more joint pain in my week off

I certainly have increased discomfit the days. After I take Xgeva

I am unsure as to what is really is the culprit

Xgeva, letrozole, or ibrance

Or likely all of then

lynnhbtb profile image
lynnhbtb

YES!! Joint pain lately, but I thought it might be from Xgeva.

Jerseygirl45 profile image
Jerseygirl45

I just started keeping a log of how I feel daily so I can see if there is a pattern. Some days I feel good without pushing myself so I want to see if I can make plans if I know there will be a good day. Crazy I guess😘

Jerseygirl45 profile image
Jerseygirl45

That is what I am trying. Some days I feel so good I do a lot laundry,cleaning. Some days I can't get out of chair.

BeckyHobson profile image
BeckyHobson

Hi Marianne,

Long time no chat lol

How are you?

My doc had a good point about the fatigue we feel at the end of week three and our off week. He says he thinks that by that week off our bodies are experiencing the full effects of 3 weeks on. Made sense to me.

My body has adapted to the fatigue and I really only need naps the week off and those are just one hour power naps late in the afternoon.

However, my lower body joint pain is awful these days. It gets really bad the more active I am? Almost like the discomfort I had before switching from letrozole to Aromasin last winter. I have added Fulvestrant (butt shots) to my drug party and I suspect that is causing the leg/knee/hip issues but I’m not going to complain lol

I’ll power on and let the meds do their thing.

Take Good Care,

Becky

Katiesblue profile image
Katiesblue

Hi, I'm posting this for my Mother. She's on Ibrance and Letrozole for about a year now. She seems to be tolerating it well other than the fatigue. She has noticed that on her week off (week 4) she tends to get dizzy and nauseous but not on week 1-3. Has anyone else had this problem? Is this just part of the side effects that she has to live with?

Thanks

Katie

Puppy_love profile image
Puppy_love in reply to Katiesblue

Yes I also get dizziness and nausea,

Puppy_love profile image
Puppy_love

Fatigue, sinus problems, eyes tearing, some nausea and difficulty sleeping.

Likes profile image
Likes

Hi Marianne Yes. I Have so much joint pain and fatigue. I had so many mouth sores day 16 of ibrance I had to stop it then .. 2 days ago.

I hope you feel better!

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