Fatigue: I was wondering if anyone has... - SHARE Metastatic ...

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Fatigue

I was wondering if anyone has figured out which med, Ibrance or Letrozole, causes the fatigue? I'm on 75mg Ibrance for the second month since lowering from 100mg. Yet I seem to be just as fatigued.

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I was on that combo and my markers started going up. She took me off letrozole first and I was still tired. But to be fair I think all of the meds are going to make us fatigued. Or it is the cancer, since I stopped Taxol 9 weeks ago and have not started a new med yet and I am still tired all the time.

Barbara

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I had a rough time on Ibrance. It was my first experience with the heavy duty meds after being diagnosed. I had to take naps every day which I hated. Fast track, bc of surgery, I had to off the Ibrance for almost four full months but still got the injections. Because my body was not healing from the surgical wounds which wound up taking fours months, not one month, my onco decided not to put me back on Ibrance. During this whole period though, I continued to get my falsodex injections so I think the fatigue was, for me, the cause of my excessive fatigue. After doing a scan before returning back to meds, they found a new cancer tumor in same breast, but luckily (I guess) it was the same type of cancer I had. She then put me on Verzenio (150 mgs. twice per day, horrible, could not handle it and stopped after two weeks), then 100 mgs. twice per day (felt the same as being on the 150 mgs. and again stopped after two weeks) and then the lowest dosage 50 mgs. 2 x per day and what a difference. I do NOT feel tired anymore, I don't have the severe diarrhea or stomach pains anymore, I don't nap anymore and I know almost day to day how I am going to feel. Sometimes I am tired but I think it's from stress, but for the most part, I feel more "normal" now on this dosage and drug than I ever did since starting this whole routine. The Ibrance made me so exhausted. This low dose of Verzenio, I don't need naps anymore. Wishing you the best.

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I was going to go on verzenio before the Taxol but I was so afraid of the side effects since I had just had bad side effects on Afinitor

Now I will consider it if the Kisqali does not work. Maybe I should ask for the low dose from the start.

Good luck to you, hope you get a long time on it..

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I’m on Verzinio and had really bad stomach pain and diarrhea then started using cbd oil and thca which is the thc but does not get you high helps tremendously also take Imodium if diarrhea starts I’m happy with the results so far. If you are prepared to combat the side effects I find it to be one of the more tolerable. I also get Faslodex shots and Exgeva shot as the cancer is in my bones. Hope you find the right one for you.

Barb

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Oops this post was meant for Jersey Girl. But glad all seems good with you I also couldn’t take Ibrance.

Barb

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I agree I think all the meds cause fatigue and our bodies are run down from the cancer also even with exercise.

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I think all of the meds have the possibility to cause fatigue, as well as just the cancer itself. I know Anastrozole, Letrozole, and Lynparza all caused severe fatigue, but now that I’m off all treatments, I’m once again severely fatigued.

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Wow Lisa! No treatments at all? How are you doing besides the fatigue?

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I officially took myself off treatment almost 5 months ago. Believe it or not, other than the fatigue and depression/anxiety, I’m doing good! My doctors are not thrilled, I still go for blood with my oncologist every month and my tumor markers have not really increased. I haven’t had a scan in six months. My last scan showed that the Lynparza has shrunk many of my tumors but I just couldn’t deal with the side effects. My doctors won’t do a scan until I show a major symptom of it spreading or 9 months to a year, whichever comes first, the anxiety of not knowing is what’s killing me!!! I do still take pain meds (I was diagnosed 5/2018 de novo with bone mets) but every new pain I have makes me think it’s spreading, but the doctors don’t take me seriously. They say they scan to see how treatment is making me improve, not to find out that it’s getting worse so until I can prove something to them, I have to wait.

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I admire you for your courage to stop treatments except pain meds. Yes, the not knowing must be nerve racking! Is it possible to pay for a scan out of pocket at a reduced, negotiated rate with your insurance?

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Probably not. My PCP is still my main physician (she controls my meds) and she works closely with my Oncologist and Psychiatrist and I really feel she is mad that I gave up treatment and wants me to suffer (well, ok I’m probably being paranoid but that’s how I feel!!). I’m so broke from all my doctors appointments that I couldn’t even afford a scan. I went on Disability about 5 years ago because my depression was so bad (I have worked full time since I was 18 and I was 43 when I got SSDI) and although the amount isn’t too bad, it just covers the necessities.

What else is going on with you? How are your treatments other than the fatigue? Any new movement or decreases in movement??

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I'ts hard to win in our situation. One step forward, one step back it seems.

My last scan showed everything stable (lung and lymphnodes mets). But I felt much better a few months ago, that's what worries me and I am probably trying to put that on the meds, and hoping it's the meds and not progression.

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After being on meds, I agree they can make you feel so much worse!! And you don’t know what’s the Cancer and what are the side effects!! I’ll be thinking of you and praying that it’s not progression!! ❤️❤️❤️

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Thanks Lisa ❤️❤️

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Aren't you on Medicare. I just hit Medicare this month. They pay for scans.

"Does Medicare cover CT scans?

Medicare Part B covers certain diagnostic tests that your health care provider deems necessary to advance a diagnosis or rule out a suspected illness or condition. These include CT scans. Other such imaging services and diagnostic tests include X-rays, MRIs, PET scans and EKGs."

There are many organizations that will help you with cost. I now can't afford my Verzenio on Medicare. They want me to pay for 20% of cost every month which is almost $2,500.000 a month. While waiting to enroll in a pooled trust spend down so that I can have Medicare and also get on Medicaid as my secondary insurer, I can't afford to pay. But I reached out to the pharmaceutical company that makes the drug and they are willing to help bc I do have Medicare Part D (for rxs) but still need to pay that high amount. So they do help women in our situation. I had to fill out a form and my onco filled out part of it. I have the Trust all set up, just waiting for Medicaid to approve my spend down (I have medicaid for two years bf having to go on Medicare and did not pay a penny.) Once approved, MediCAID will then pay my premiums of $135.50 and $37.90 for me increasing my SSDI again and also will pay whatever MediCARE does not. Since this is treatment for life, it's the only way to go. Nobody should not be able to get treatment bc they can not afford it. Luckily, my cancer center has great resources, social workers, attorneys (who help me). I hope if you look you can find organizations willing to help with even paying your rent or other needed assistance. Cancer is expensive. Wishing you the best.

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Well done!! I was diagnosed stage 4 early this year. I had a lumpectomy (at the time they thought it was stage2!).

Then i declined further treatment in favour of quality of life.

Started getting a bit out of breath so decided id give it a go and i start on 9th sep. I'll see how i manage the side effects.

At the moment the only reason i get tired is due to degenerative disease in my spine / hips which causes me a lot of pain and therefore i take codeine.

I wont hesitate to come off tteatmemt if the side effects are intolerable and regardless Im still considering the dog wormer tablets !!!

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I had to stop my Ibrance for five weeks whilst I was having radiotherapy and I thought I would feel less fatigue and joint pain just on letrazole but No I felt exactly the same but then the radiotherapy probably made me feel tired instead of the Ibrance ...who knows?

Barb xx

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I guess you're right Barb! Who knows, I'm probably trying to find an answer where there is none.

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Well I’m awfully tired at the moment but on stronger pain medication and I think now it’s that...even though I’m on the no Ibrance week still just want to lie down constantly

Nightmare

Barb xx

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Yes, the accumulated effect of all your meds to make it worse and painkillers sedate me too! By the way, my off week of Ibrance, I feel worse!!

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Yes when I was on that shit the off week was horrible- joint aches- I was only on it for 5 cycles did nothing for my bone Mets- now on Afinitor!!! Hope it’s doing something- I’m running out of choices or options-

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Ugh! I hope and pray Afinitor is working!!! How are the side effects on Afinitor?

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Low blood counts and mouth sores- do a steroid mouth rinse 4 times a day to prevent any problems- take it everyday along with examethane.

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I used to get mouthsores. I take a liquid B12 and I believe applying a few drops in the sores helped. I haven't gotten them since. When I feel one come up u immediately apply and absolutely no pain and they'll disappear. Doesn't hurt to try

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I feel worse on weeks off too! My onc says it's a cumulative effect and my platelets get low by my 3rd week. My body is working hard to recover so I can begin Ibrance again and get my shots.

It's a rollercoaster.

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That's what I was told as well. My onc suggested I try 5 days on 2 days off schedule. I'm going to try that seriously when I get back from my next trip and see if that'll help.

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Hope it helps!

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I never had radiation or chemo but I had a friend who got breast cancer before I did and she told me as bad as the chemo was, she felt the radiation was harder. She said she was always so fatigued after radiation. So maybe that is why.

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Yes I was warned radiotherapy would cause fatigue it that would start to improve after a few weeks...it’s nearly 8 weeks and I’m still so tired...not interested in doing things..also I’m on morphine patches for pain and I feel wierd as if I’m not here...think I’ll stop them and go back to the oral meds even though they’re not brilliant at least I feel like me...just like a zombie

Barb xx

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For me like I told the onco, it's all about quality of life. I said to her, I never married, have no family (siblings, cousins, etc), nobody depends on me so unlike most of your patients, I am NOT willing to give up a quality of life for possible additional months. I was honest I would rather have less time than be constantly put on meds that make me feel so awful that I don't leave my apt. I hated the Ibrance bc on my week off I felt like death. Then after two tries with 150 mg and 100 mg of Verzenio, twice a day with no breaks), the side effects were horrible. I read that with Verzenio and falsodex you average about 16 months of no progression while without the Verzenio and just the falsodex injections, you average about 9 months without progression. I had such a rough time with the Verzenio I said, I would rather take the 9 months so that I can enjoy my life rather than stay home bc of the side effects. We agreed one last try for the lowest dosage which is 50 mg. twice per day and that was the trick. I feel normal, I do not have to take naps and I can control and manage the constipation/diarrhea side effects. But I was not willing to take it feeling as bad I had been feeling.

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I am so glad the lowest dose works for you!

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I thankfully never had radiation. But I heard that with rads fatigue is pretty severe

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I stopped IBRANCE for three weeks due to neutropenia. I had much more energy! Stayed on letrozole, so I’m assuming (for

Me) the fatigue culprit is the IBRANCE.

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I started just over a year ago on Letrozole only and felt fine. No fatigue. So maybe that's what it is for me as well, after all.

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I was on Letrozol for 5 years with no exhaustion. Now I’m on Ibrance and Letrozol. There is a huge difference in the amount of exhaustion so I also blame the Ibrance. Elaine

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Wow! Maybe it is the combo then.

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Because an infection flared up while on Ibrance (I only did three cycles), they had to take me off it, gave me antibiotics that didn't work, so I had to have invasive surgery to cut tunnels in my inner upper groin area. I had been told the recovery would be very very painful and OMG they were right. But when first taken off the Ibrance to try five weeks of antibiotics (which did nothing to help the infection), I felt normal again and I told my onco it feels good to feel normal again and I realized how different I felt on the Ibrance.

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What a nightmare and then antibiotics not working?

Did you take Letrozole through it all?

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I was on falsodex injections since the beginning of treatment and continued the monthly shots while off of Ibrance and recovering from the horror of that surgery. I Anyway just about three and 1/2 months off the Ibrance, when it was time to go back on meds, after an ultra scan and another mammogram (which was not scheduled previously) they found a new cancer tumor far from my original one in same breast. So had to have biopsies and luckily the cancer tumor was the same type of cancer. I had no idea until my onco told me that you could actually have two different kinds of breast cancer in one breast or that this new cancer tumor could have caused my original type of cancer to change. Learn something new every day. I try and go with the flow so I don't get easily upset or anxious about these things. I always say that I feel better with just having cancer than I do taking the meds to stop the cancer from spreading but I guess that is for all of us.

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I so respect you for the way you handle your situation. You're so right, we have to go with the flow and have to deal with this cancer the best we can. ❤️

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They both make you tired n cause fatigue. I speak from my experience since my doctor give letrozole first and 4 months later I start Ibrance. So, when we are on that combo the fatigue can be worse.

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I also started Ibrance 4 months after the Letrozole.

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I had extreme fatigue caused by the cancer before I was diagnosed in 2017. Once I started Letrozole that fatigue lessened and pretty much went away for 14 months. Then I definitely felt fatigue during the few months I was on Ibrance at 125mg and 100mg. I expect that was related to the drop in red and white blood counts. I hope you feel better after a few more months at 75mg.

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Reading all the responses, it seems the interaction between Letrozole and Ibrance (successful treatment as it may be) is to blame for the fatigue. No?

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It’s been my experience that all meds caused fatigue. I’ve been on few different ones in the past 6 years. I took a week off of meds a few months ago and by the third day I cried because for the first time in 6 years I felt like my old self and forgot how that felt. I guess after so many years feeling lousy just turns into your new norm as lousy as it is I’m still standing 💃

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Yes, we have to accept the new normal. I am still here and standing; hot to spend time with my son who visited from Atlanta, so that beats the alternative ❤️

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I remember when being taken off the Ibrance bc of the infection I developed, after a few days I felt "normal" again. I was so excited bc I had forgotten what that felt like. My onco had emailed me and I said its feel great to feel normal. Unfortunately, my recovery from the surgery was long, very painful and I had to have a visiting nurse come every day to put medication in and re-bandage it. But it felt great to be off the Ibrance. I was off the Ibrance (but still getting the shots). Unfortunately, during that time off, a new cancer tumor developed in the same breast that I have a tumor and far from the new one. But it's the same type of cancer so I continue my onco took me off the Ibrance (and I was so so happy about that) and am now on verzenio. I had major side effects with the highest dosage 150 mgs. (you take verzenio twice a day with no breaks). She switched me to 100 mgs and same thing I stopped taking it because I had no quality of life. She then said let's try the lowest dose which was 50 mgs. twice a day and it made the world of difference. At least with this drug, I wake up knowing how I will feel day to day.

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I’m pretty sure it’s the Ibrance for me because I’ve been pretty anemic since starting it 20 months ago. My body has mostly adjusted because I’ve learned how to deal with it. BTW, I’m on the full 125 mg dose.

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Hi Mama, I am on my 6th cycle of ibrance. I also have noticed my iron levels are low so I am trying to increase my iron rich foods especially when I get toward the end of the cycle. Yes, I am anemic my last few Labs on ibrance. I am still experimenting to see what works with the fatigue. When I increase my iron rich foods it seems to help.

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Hi Wolverine,

The extra iron may not help. I have plenty of iron - there are two blood tests for that. The Ibrance won’t let us access it. My dr says that’s part of how it works.

Take rests as you can. I’ve been on Ibrance for 21 months, full 125 mg. My body sort of adjusted to being anemic. I have learned to strategize my energy usage. On days that I want to be really active (like swimming 2 miles), I don’t plan anything else for the day. When I plan dinner parties for my family, I accept help and contributions.

Sometimes I feel fatigued at 10 am. If I can, I take a nap.

Listen to your body.

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That's very useful information, Merma. I did not know that ibrance prevents iron absorption. Well I will keep trying, I'm beginning cycle 7 now. Today is one of those days I don't feel like getting up. Sometimes I can overcome it. I also have adrenal insufficiency due to a metastases on my adrenal gland so I take steroids. That causes fatigue as well so it's a double whammy for me. Well thank you for your advice I will keep trying.

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I only was on the 125 for 3 months

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Tbh I’m on letrozole but they switched brand at the pharmacy. I have lost some side effects but the fatigue is horrendous. Was tired before but this is crazy. Hope you sort it. Xx

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Thanks. I need to learn when I am most fatigued and what did I do to get to that point. I want to stay active but I guess need to monitor myself better

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It’s so tough on you because all you want it to be active and “normal” whatever the hell that is. Be kind to yourself and listen to your body.

Don’t push too hard. Good luck and everything crossed that you sort it out xx

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Thank you❤️

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I took letrozole for 11 years and had no fatigue or tiredness. I am now on ibrance and faslodex and have some tiredness but nothing I would call fatigue. So my inclination would be to say it is the ibrance that is causing your fatigue; I am so sorry...hoping you can find a "recovery" tool so you aren't so fatigued.

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You took letrozole for 11 yrs and no side effects, wow! Where are your mets? When you took letrozole did you also take any type of chemo?

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The letrozole was before metastatic diagnosis. Prior to going on it I had taxol, then surgery, then doxorubicin/adriamycin-cyclophosphosphamide (A-C) and more taxol, then radiation. Mets to ribs, liver, lung. No side effects on letrozole.

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Thanks

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I really believe now it's the two together that cause most of the fatigue side effects

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I believe it is a common side effect of the Ibrance , but also extreme fatigue can be from the cancer itself as many people experience it before they are diagnosed . Mine was much worse in the first 6 months of taking Ibrance 125mg / Letrozole but nowadays it has lessened to more occasional tiredness than actual fatigue . I cope with it by pacing myself and resting more when I’m at my most tired stage of the cycle ( for me that is usually from the middle part of week three to the early part of week four - my week off Ibrance). I read that Ibrance has a half -life of 29 hours, so it is still in your system when you actually come off it in week four .

Eating a balanced diet, drinking lots and walking in the fresh air, as well as resting when your body tells you, all do help tho ‘ x

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I eat the healthiest of diets and force myself to excecise. You're right about resting when my body tells me too. Maybe I wait too long and need to rest more often.

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it is my theory that the low blood cell counts are what causes MY fatigue ... it's like they dip on the 5th day and I can feel it; other than that, I can't comment because I don't take it the 21/7 way, I go the 5/2 way and only get a bit fatigued if it's my 5th day or I didn't sleep well the night before ... hope this helps! <3 xo

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I think it is both meds. I was on letrozole for 5 years after my initial dx and I was exhausted.

Now on Ibrance and Faslodex shots I'm still exhausted.

I think fatigue is just part of the mbc deal.

I get B12 shots every month from my palliative care doc and it helps. She also perscribed folic acid along with the B12.

I also try to walk everyday.

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I haven't read all the replies here, so many! I hope somebody had some good news for you. I was diagnosed with bone mets from the get go in March, 2004 and have had alot of fatigue off and on throughout all this time. Diagnosed way before Ibrance and the other targeted txs. I was on Letrozole and Zometa as first line tx and I remember being hit with waves of fatigue that made me feel as though I needed to lie down where I was standing, for a long long nap! I don't know if this is still with in tx protocol, but then quite a few oncs would prescribe Ritalin or the other ADD drug to help overcome the fatigue. I remember when my mother had lung cancer in the 1980's and had horrible fatigue. It would be interesting to know what percentage of cancer patients have fatigue that interferes with normal living! Sigh! Better than pain, but sure hard to live with.

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Hi Spiffy....

It is my understanding that it is primarily the Ibrance as it can cause your RBC counts to drop. However, you have a war raging inside you and the cancer itself is responsible for some of this fatigue also.

Terri

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Ibrance makes me tired im on 100 but i changed to anastrozole and i dont have the joint pain. Im taking more vitamins and it helps.

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Probably a lot of opinions, but I’m guessing Ibrance. My third week on is definitely when I’m feeling the most exhausted 😴

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I take letrozole before I go to sleep and this helps. I take Ibrance at 6pm. Thanks Reenie

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Any reason why you don’t take them at same time?

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For Ibrance I need to take it with food. Letrozole makes me very tired and my oncologist said that I can take it before bed.

Ibrance you have a four hour window to take it. Hope this helps. Reenie

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Hi, Reenie! What is 4-hour window? Never heard of this? Thank you! Linda

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Good question. My watch buzzes at 6:00 for me to take my Ibrance. I can take it within 4 hours such as up to 4 hours later or earlier. If I am going out, I can take it earlier such as 4pm or later at 8pm. I like to keep it at 6:00 as I need to take it with food and I am usually home to get dinner or a snack. Hopefully I answered your question. Thanks again Reenie

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Thanks, Reenie! Yes, answers my question! ❤️

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When I was put on Ibrance (only lasted three cycles) a nurse from Pfizer that federal expressed me the drug, would call every month to track how I felt, side effects, etc. She told me important to try to take the same time every single day within an hour and that if I forgot (which I did occasionally) to take it at that time and say two hours had passed, not to take it but let my onco know that I missed a dose.

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Linda if I helps my oncologist told me when I started Ibrance that to keep serum levels of the drug stable for maximum benefit it is recommended to take it around the same time each day but if it was within a 4 hour window (2 hours before or 2 hours later than previous day) that was perfectly fine.

Sandra

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