Am wondering if anyone else is experiencing deep exhaustion from Ibrace? Omgosh, I'm just a zombie. Was on 125mg and my wbc got down to 2.8 so too low, just started back up at 100mg. After raising my wbc to 5.9. 2 weeks off. Oiy. I have a 10 year old special needs son. His main caregiver. I plan on sticking around a LONG TIME and simply living with this. Had to do bone strengthener and wow did that take me out. I feel like since I've been getting treated my quality of life has suffered big time. Coffee makes me anxious. Plus I'm trying to alkaline my body so cancer doesn't spread. What are some of the nutritional things you are doing to keep your life force from these meds.
Thanks for your time.
Zzzzzzzzzzz
NICHOLA
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Colacancer
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Are you stage 4 or metastatic? This forum is for metastatic, of which there is no cure. I only ask because the drugs for metastatic may be different at some point and we wouldn’t be much help if we’re not taking the same things, procedures etc. Since you are taking Ibrance and a bone strengthener, I can speak to those two drugs, at least my own experience. Yes, fatigue is a very real side effect. I don’t do nearly what I used to do. A few minutes of housework and I rest. I sit around, a LOT! It’s a complete lifestyle change. It has gotten a bit better over the years, 8, but still very fatigued. The day after my bone strengthener I pretty much sleep all day. Remember to drink plenty of fluids too. I haven’t changed my diet one bit. I’m going to eat what I want. Not going to spend my time figuring and measuring. That’s just me. I hope you have some kind of support group that can help you. It’s tough to take care of yourself and someone else too. Good luck 🍀!
Geniune question. What is the difference between stage 4 and metastatic? I know I am MBC but I assumed these terms are synonymous, as per the UK Health Service definition which I will paste here: stage 4 – the cancer has spread from where it started to at least 1 other body organ, also known as "secondary" or "metastatic" cancer
I did not know stage 4 was classified as such. My brother-in-law had stage 4 colon cancer, but it had not spread. I will look up the definition and see if it’s different here. Thanks!
Metastatic is Stage IV. It means the cancer has spread to a distant part of the body. The same is true for colon cancer: if it is metastatic, it is graded stage IV.
I found something that says different types of cancer may be staged differently. Maybe that’s why my brother-in-law was stage 4 but not metastatic. So much to learn always!
I am stage 4 . 3 masses in my rt breast 2 nodes, lesions on liver ,lungs and spine. I have 180ed my diet but I am definitely having my treats here and there. I had too. If it takes me out and I'm eating sprouts instead of a burger, I'll be pissed 🤣🤣🤣I've mainly cut out junk food and sugar. Sweets cookies and cake. I was a baker. And have a 10 year old so Mc Donald's and cupcakes were a staple.. so no more of that.
My Heart goes out to you. I am Stage4 Metastatic CC also spread to other organs. Fatigue for me is basically now a stay over guest who rarely leaves. I have changed my diet not significantly but I never eat fast food and that's been for a great many years now. I do crave a cheeseburger and fries but I am not craving the pain and aftermath. My Cancer is also in my stomach so eating has become rather painful. I currently have a Sausage &Cheese Pizza in my freezer that I will buy and cook every now and then. I always regret it though bc the grease and cheese wreak havoc on me. I still just look at this one and haven't had the urge to cook it. It may just get tossed out...
Trying to heal my gut as my Dr. says we need to do. She has helped me immensely.
If you are going to indulge, I guess I would say to eat small meals. Chew everything and just very minimal meals. Drink lots of water and keep your body hydrated. I tend to forget that one. I have had to retrain myself to always keep a full glass of water nearby and just keep drinking because it truly is super important.
I do not eat any cakes or pastries ever. No more spicy food. No processedfoods. Though Mac and Cheese I do eat they are a comfort food. Nothing with questionable ingredients. And even lettuce is very hard on me since my appendectomy many years ago. If you are able to still eat all of those well, I guess you are very lucky.
With fatigue I have learned what time of the day my energy is optimal and I use it wisely. Usually a nap and never schedule more than 2 appts per week as they exhaust me. I can spend a day sleeping and allow my body the rest she needs. If you can learn to listen to your body and not ask too much then you will do better. My workouts have significantly suffered and I miss them. If I want to be around for as long as possible I have to be really gentle with my body.
I hope that helps. Sending you a warm gentle hug. Stay Well & Stay Blessed 💝💐🌷
Thanks you!!I eat like a guru now. No wheat, no dairy no soy, no garbage. But after radiation, YOU KNOW I AM PLANNING ON A WHOPPER!!hahahah. It's close to my stomach so we'll see how I feel tomorrow. You are so kind I'm so sorryvforbyourbstomach stuff. Takes all the comfort out of our situation when we can't have a heavy meal to kind of ground us, You know?I do try and eat all organic and tons of veggies and fruit. Always balance with a walnut or pumpkin seed. I juice too
I truly hope it is not near yr stomach too. That's the last thing you need. I have BC metastasized too. Darn it!It must be really hard having been a Baker to give tha up. I miss the smell of all the Baked Goods because there is nothing like it. As for cupcake frosting....salivating here! I agree with you though you absolutely have to treat yourselve. I did all the right things for my whole life and so for this to come up and get me now is such a terrible surprise. As it must be for all of us. I have read about many athletes getting Colon Cancer and I was an athlete and ran long distances for much of my young life. I truly do wonder if there is any correlation at all?And this has been simmering in my brain ever since diagnosis so I have to say it:
I actually became very sick after I got the J&J Covid vaccine and I had 2. And I know I know.....not related and yet, here I am 51 Non Smoker, NonDrinker eat well exercised all my life and then suddenly I got that vaccine and I became very ill and then was sick for months and nearly died and they said-you now have Colon Cancer and my life has never been the same. So it's just a thought that sits in the back of my mind like, huh? Too late now though....
Anyway, clearly You are Super Healthy and again doing all the right things! I will leave you with 1 Coping method for yr cravings. It's a little bit gross but hey, we are both Stage4 Metastasized Colon Cancer!!!!If that doesn't Suck Big Time! I dk what does?!
If I want something really badly
McDonald's French fries, Cheeseburger the yummy stuff...I will buy it. If I take the bites and chew it and enjoy the taste for a few seconds then, I know super gross
Spit it out and don't swallow it...then I can basically eat but not eat the whole thing. Anyway, it has helped me.
Again I send you warm wishes and am here for you. While it is NOT the same thing I have my dog who is my closest family member and I am desperate to keep going for him too. You have an actual son who needs you and I get it. This is very very hard.
Warmest Wishes and Enjoy that Whopper if you get it 💝💐🌺🙋 ~
You are so cute. Oh I'll eat that damn whopper and love it.. and whoabdobI have TO AGREE WITH YOU. MY CANCER SPRUNG UP AFTER HAVING COVID. I was actually in the doc to check 5o see if I had long haul covid. And I got 3 of the shots. I was not a health nut at all. I was a jazz musician!!!but a foodie and baking is the fun time with my son. He loved doing it. But I do SERIOUSLY THINK COVID had a part with this. I didn't have a lump until 2 months after I had it. No breast cancer in my family???and by February I just mentioned the bulb in my boob and my doctor looked horrified. When she felt it. She knew.then all the tests came back and it was everywhere. But I think this grew after covid. I blame covid. They have no idea what covid can do. And so many healthy people getting major cancers out of the blue I think it did something so profound to my immune system.. biological warfare. I wear a mask everywhere now. I s3riously agree
Well we have many things in common.Can you still bake with yr Son just use Almond flour or other types of ingredients? When I was little there was this Amazing healthfood store and they had a healthfood bakery. They made the BEST Oat Cookies and Carrot muffins. Truly healthy stuff. I used to live literally on their food. Is that a possibility?
You can clearly still play that fabulous Music? Music has Saved me from severe Depression in this whole mess. You are still thriving in this Life in many many ways!!!
You seem very Strong and I admire yr perseverance. Happy Day to you 🐦🌷🎶
Back at you , sweety. I literally am so low energy for baking and my son doesn't actually Eat any of it.. so it's a huge waste of money. And I literally don't want to eat it. Just trying to keep the snacking down . Weight isn't good for estrogen driven cancers so I'm trying to stay without so much baked goods. And definatly no sugar. I wish my kid would eat!!hahaha. He eats 5 things. And half I have to chew for him. Tough. Autism makes cancer look like a joke!!hahaha. Im used to challenge. But I am dealing emotionally with the fact that cancer emotionally has to do with hopelessness and unfogiveness.so I received I wasn't foglrgiving my sons disability. All the brutal challenges. 10 years of tough. So resentments to always fighting are tough. So I'm working on a mindset of , I forgive and love and accept. Love my son more then anything. Lots of things ads up to why we got sick. So I'm trying to peel the onion and release the sickness. That this doesn't have to be a death sentence. Blessings friend. GODS THE LAST ONE TO SAY
Hi, I also got diagnosed with MBC after having covid. I had shortness of breath, thought I had long covid but found I had breast cancer that had spread to liver, lungs and spine. No previous history of cancer, and no breast cancer in the family. Had eaten healthy, and kept fit all my adult life. I'm on Ibrance and Letrozole, get tired but do what I can and then rest which is quite often. I try to eat healthy but have still cakes, chocolate and anything else I fancy, I'm not going to deprive myself anymore!!! Wishing you all the best.
2 years ago my Oncologist had to switch me off Exemestine (Aromasin) to Ibrance after finding a new mass formed in the splenic area of my abdominal parietal tissue. She also prescribed Faslodex treatment started in July?🤔 . Went off Ibrance 1 week before March 3 for Arthroplasty Replacement surgery. 1st week of April Onc said it was safe to start again. Meanwhile, I'm moving into a new apartment (with help) when I suddenly develop a horrific bloating in my abdomen that led to not being able to keep any thing down that led to 2 ER visits & admitting into the hospital. Diagnosis was Parenthesis (?). I developed massive fluid buildup. No GI on staff on the weekend, so had to wait until today (Monday). From 1p - 2:30p the drained 5 Ltr out (2 buckets meas. 2.7 Ltr each). Also took a sample to hospital lab for testing. They're worried either cancer caused or liver. Is this Ibrance caused?
Oh geez that's terrible. I'm so sorry. I do Acupuncture weekly and cranial sacral work. Once a month. I try and get 6000 steps in a day too. Just to move lymph. Do they think it's a reaction to the drug were all so different and individual. I do find deep relief from a great acupuncturist. Keeps the garbage flowing
the Ibrance caused me great fatigue as well, but there are lower doses and different methods of taking them. I am on the .75 dose, and it is much better for fatigue, as well I now take Ibrance two weeks on, and two weeks off, the original 3 weeks on, and one week off didn’t raise my white blood cells enough and was very unwell on the 3rd week.
I find that over time side effects do seem to get better.
Perhaps worth talking to your oncologist about a lower dose and scheduling
We lowered from 125 to 100 right now. So we'll see how I fair. Im starting to get more energy. I think the bone strengthened just did me in. I slept almost 15 hours. Had too.
great I hope you see improvement- can you tell me the bone strengthening meds you were on- I have start a bone Med soon but don’t know what it is- I hope there isn’t a lot of zombie fatigue
oncologist don’t seem to be schooled in nutrition, my best experience is being on good supplements!
I’ve been on ibrance and anastrozole since 2019, and fatigue is still a big issue. So I will make sure to get all my vitamins, calcium, vitamin B shots (monthly)zinc,calcium, magnesium,curcetin,probiotics,omega 3&6,
Hi Colacancer. My only comment is dont be trying all the new fangled garbage that everyone and there brothers pedal about ways to stop cancer and other diseases!!! Do what the doctors tell you eat healthy and in moderation and exercise as much as you can on a regular basis!!!!
Oh I am doing what they tell me and have made sure to check for contraindications. I do Chinese medicine with western to chill out the misery of side effects. All approved by the oncologist. I don't do any guru stuff unless the oncologist gives me the green light. I don't want to interfere with anything they do
Hi. My oncologist said exactly the same thing. She said a lot of people when first diagnosed want to try these diets that are supposed to cure cancer. She told me to just eat normal healthy foods, keep hydrated, and do light exercise if I can, I have bone mets so I can't do a lot of exercise. Like you say, everything in moderation. Best wishes.
Hi Nichola. Sorry you're dealing with that heavy fatigue. I went through that, too. My solution turned out to be two things - taking Ibrance and letrozole about 8:30 at night and switching to a lower dosage of Ibrance. I couldn't tolerate the 125mg so was only on it for four or five months (my neutrophils were .7 or less) then switched to 100mg for 5 1/2 years which worked great. In February of this year I switched to 75mg and the difference is fantastic (I have energy in the afternoon - and still no progression) so I hope you will react to the 100mg in the same way. BTW, I haven't seen a WBC over 2.7 since September of 2020, but my oncologist isn't really concerned. His focus is on keeping the neutrophils at 1.0 or over.
And the bone strengthener side effects were quite the roller coaster ride for me the first four or five months, but they did stop.
Hang in there! We don't give out medical advice here, but there are a lot of great ideas on how to handle side effects. Always, always run these ideas by your medical team first!
I was on Ibrance for 4 mos. My WBC's got too low and weren't recovering so my once took me off it. I got extremely tired. Zombie describes how I felt. I didn't realize til it wore off how depressed I was on it. I am on Everolimus now. I think Ibrance worked better but my WBC's are improved and I am not experiencing the awful fatigue.
I can only imagine how exhausting it is to take care of this new you while taking care of a child with special needs. I was diagnosed mBC in January , on 125 mg Ibrance, Letrozole, and Xgeva every other month. My only problem with the meds was when my white count dipped in February. But it started to bounce back on third round of Ibrance in March. Now I feel like my side effects have disappeared. You didn't mention an AI inhibitor or SERM like Letrozole. Was wondering if you were on anything? But mostly am reacting to comment on alkaline diet. While an alkaline environment in the gut may be good against the cancer it's not clear that an alkaline diet will produce an alkaline gut-- it's all based on the overall chemistry in your body. I really suggest you just try to cut out sugar and preservatives (so mostly sweets and junk food), eat smaller plant-based meals, but eat often and drink a ton of water. Also, I love this site about diet and nutrition during cancer--- they do their homework and their research and you can count on them for reliable info-- American Institute of Cancer Research, aicr.org/. Be sure and talk to your onco about your diet too. Hope you got your zzzzz's. Stay strong.....
I eat really healthy organic piles of veggies and fruit mixed with nuts clean proteins. I'm on exemaston too. And 100mg Ibrance. Getting radiation on my spine tomorrow for 2 weeks so I have to stop ibrance during that. And yes the special needs child. We'll hes intense and10 years old severely autistic. The 1 percent so it breaks my heart that I'm so wrecked and can't keep up with him. Makes him more stressed to see his usual power house mom, so spent. He knows I'm sick but not sure how much he understands. I try to make it very light. But sometimes I want to just break down. Hes 10 in diapers bad good issues learning issue. 10 going on 4 years old. Can't do anything for himself. Not even chew his food. So it's deep. Well be going to stay at the hospital again becaus3 he has a compacted bowel. So yes its a tough one. I plan on sticking around a Kong time. We just haven't found the sweet spot with my meds yet
I was pretty much okay on Ibrance (full dose) and Fulvestrant, a little tired one day or two. Now I am on Verzenio (lowest possible dose) and anastrozole, and the fatigue is kicking my butt. I spend many days in a fog, I do one or two things then have to rest. I often fall asleep for 20 minutes to an hour in the evening (then I am a live wire when it is too late to do things). So, whether the cause is Ibrance or Verzenio, dealing with the side effect is probably the same.
Early on, I started taking Wellbutrin (buproprion) 150 xl because a nurse practitioner I was seeing found a study that showed it helped women having fatigue from breast cancer meds. It seemed to work with my initial treatment. It doesn't touch the fatigue I am having now. I am going to an integrative medicine doctor in a couple of weeks. They use things like acupuncture, massage, exercise (I am already doing that), and meditation. I read at the website of a "cancer-related fatigue clinic" -- there is such a thing?! -- that mindfulness works best! That is not good news for me.
I have also spoken to an oncology nutritionist about stronger drugs. Some people with mbc and no energy take a low dose of methylphenidate (e.g., Ritalin). It seems to be used mostly for cancer patients taking opioids for pain, though.
But first, my oncologist ordered a PET/CT. I guess she thinks the pain and fatigue I am having now are signs of progression. Pretty depressed about that. On the other hand, she only thinks cancer and has neglected referrals that might address side effects. Will know by Tuesday. Hate the waiting! No, the waiting is better than bad news.
Hello, I have been on Ibrance for exactly 5 years--I took my first dose in May 2018. I experienced a lot of fatigue at the beginning, but my body gradually adjusted to it, and while I still have some fatigue at times, things are better. I was on 125 mg for the first few years, and then switched to 100 mg because my neutrophils were too low. All in all, I have found this treatment very doable. I still work full time, and am involved in many activities. I hope you will find it doable as well.
Hello and sorry to hear about your diagnoses. I was diagnosed last July and started Ibrance and Letrozole in August. I also had very bad fatigue but it got a lot better. It took about 4-5 months but I was able to go back to work and walk at the gym so hopefully this helps. I found drinking extra water helped me but also I found I was more productive in the am. I still fall asleep and get a lot of fatigue at night but overall way better than it was the first few months.
I want to tell you I had left my job in 2000 to be a stay at home Mom, for our medically and mentally challenged son. It alone was a 24/7 job! Hubby kept working and of course we needed health insurance from a reliable source. I should have NO hair simply from trying to help my son do life! Now me w/MBC, he lives in a Group home and is 32 yo. Please realize you are trying to juggle many things, seek out support everywhere you can!!!!
Oh I do. I wish it was more at the moment. Hes home from barfing half the night, and I was up cleaning , after bad reactions to bone strengthened, and ibrace and now waiting for radiation. I'm currently wrecked. Not sure wht to expect from radiation. Barely functional at the moment. My son is pretty severe and I'm single parent. So it kicks my ass. 24 /7
I'm a caffeine addict, coffeeholic, but I've tried switching to Chai tea replacing coffee. Also, when cooking food, looking for spices that can boost energy (as long as they don't have a bad react to the Ibrance. Like clove oil.). Walks outside in the air breathing deeply have also helped me.
I've been doing on and off that Mushroom coffee. So tasty. Yes missing coffee. Tea upsets my guts. Still recovering from the bone strengthener. Wow , bad reaction to that. Now I'm on 2 weeks of radiation and don't get to take Ibrace during this time. So of course I feel better. Hahaha. Walking I do after resting. I live in MN and its been a brutal cold and dry windy spring. Like tomorrow is gonna finally hit the 50s!!so I'll get a good walk in then. I have a 10 year old special needs child with energy of 17 crack heads. So it's tough to keep up care of him. He was up throwing up all last night so hence the extra exhaustion. And radiation today after that was tough. So hopefully he's turning his corner. He has terrible bowel issues and we'll, be in the hospital soon for him.. oiy. Thank God we live with my folks for extra help. One kid knocks out 3 people. 🤣🤣🤣Thanks
I take my ibrance (125) at night right after dinner. 7:30 PM. I don't experience fatigue with it that way. I also get monthly xgeva injections, and so far they don't bother me. That said, I was originally on verzenio (125) and I was a complete zombie, falling asleep in my chair and nauseous all day. My throat swelled and I could barely swallow soup much less solid food. Now, I enjoy my meals. I feel like my attitude towards what I eat is as important as what I eat, so I treasure every mouthful. I also try to do everything in moderation. I try to walk every day, but not over do it. I eat small, regular meals, and I take vitamins every day as directed by my oncologist and primary care doctor. I drink enormous amounts of liquid, but it is what my body wants, so I go with the flow on that. The week I'm off ibrance the craving for liquid subsides. My go to beverage is polar seltzer water with a splash of juice.
Hi! I was diagnosed in 2013 at the age of 43 and diagnosed with recurrence to bones, liver and lungs etc on 2/6. Just started Ibrance and Faslodex. So far just some mouth sores but I just started. Didn't have any pain prior but treatment has me in pain in one area or the other each day. Ugh. I'll keep you posted in a month. Best to you!
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