Fatigue

[Alnmouth]

I have been on ibrance and letrazole for 5 years. I was diagnosed WITH MBC 5 years ago after being cancer free for 20 years from my breast cancer diagnosis. My last CT scan a month ago shows still no spread, apparently I have the most least aggressive type of breast cancer. I don't want to "rock the boat" but I am so short of breath and fatigued.I feel like a complete invalid. Any suggestions ladies?

[SeattleMom]

Maybe check into B12 booster? I’d check with doc first, but there are health centers and some spas that provide these too. God bless you!

Linda 🙏🏻🙏🏻💗💗

[Alnmouth in reply to SeattleMom]

I take vitamin B12 daily

[Tam-56 in reply to Alnmouth]

You are doing great! Get nutritionist ….maybe too much Vitamin B?

[Claireperth]

wow 5 years is fantastic! I only lasted 9 months and now I am on a drug trial that isn’t helping. You definitely need to see your GO/doctor as any other type of infection needs to be treated. Good luck 🌸

[Alnmouth in reply to Claireperth]

Thanks

[HbbM]

you definitely need to get to the bottom of shortness of breath. Do you know if you’re anemic? It may be a byproduct of that.

[Alnmouth in reply to HbbM]

Yes I am a little anemic

[HbbM in reply to Alnmouth]

me too. I’m trying to address it with beef liver capsules, spirulina and chlorophyll. Trying to avoid iron as cancer can feed on it. If I do take iron I use a bioavailable one and chase it with Arteminisin which kills cancer. You could also get your B12 levels checked. It isn’t easily absorbed in supplemental form so a B12 shot is best. The anemia would be the first thing I would check. Then see if your doctor can help you brainstorm what could be the next thing to check.

[Alnmouth in reply to HbbM]

Thanks

[Ntash01 in reply to HbbM]

Please let me know how Spirulina helps you? It’s been recommended to me and would like to know the benefits you’ve personally found if you don’t mind sharing. Do you juice at all?

Nx

[Red1246]

Alnmouth: so good to hear you’ve done well on both for so long. Many have much worse side effects or the meds don’t work at all and they go from drug to drug to trials. That said, I know how frustrating and alarming it can be to have so little energy. I have been on Ibrance and Letrozole since 9/2019 and only recently I’ve also felt extreme fatigue and sleep late and nap frequently. I’m just back from holiday and will see my doctor (not oncologist) next week and ask about B12 shots. I’m with Kaiser and I don’t know if they administer them.

I also suffer from shortness of breath but know that’s caused by a paralyzed diaphragm which occurred after radiation for breast cancer in 2010. There’s nothing they can do for this.

I would encourage you to ask your doctor for advice as well regarding the breath shortness. There may be a simple solution. Hope you continue to remain stable for many years to come.

[Nocillo]

I’m not usually out of breath but 5 or ten minutes of housework and I need a rest. Frustrating but it beats the alternative.

[TeddyChowChow]

Hi! Congrats on the 5 years! I am about the same amount of time on Palbo/Letrozole. I don't have the same energy I had 5 years ago but mostly am not fatigued. I find myself fatigued when my neutrophils are low... Either I'm fighting off an infection or cold of some sort or I'm stressed. I was on 125 but found my neutrophils were low too often and I was ending up having to skip weeks. I've been lowered to 100 and haven't had low neutrophils since (15 months now.) How are your neutrophils? Please do talk to your oncologist about the shortness of breath. There is a rare side effect of palbo with lungs so it is worth mentioning and talking about. I haven't had that but my asthma is way more sensitive nowadays so have a new inhaler from my GP.

Anyway, sorry you are feeling so fatigued. ☹️. Xx

[WhippetX2 in reply to TeddyChowChow]

Hi, I was interested in your lowering of dosage from 125 to 100. I have been on Ibrance 125 for two years and have fought low neutrophils the whole time. I have had to skip weeks and they do bounce up, but just barely. My onc has wanted to lower the dose to 100 but I have persuaded her to keep it at 125. I guess I have been worried that a lower dose would not be as effective. However, I have read on this forum that if Ibrance works for you it works just as well at a lower dose. Thanks for your post. I think I'm about ready to say "lets lower it to 100".

[TeddyChowChow in reply to WhippetX2]

Hi,

I don't know that I can say much about the background statistics on how well it works at different mgs. Originally, I was disappointed when lowering it was talked about thinking the same. My tumour markers have been slowly floating up for several years but, in my case, there was no change in rate of increase before or after the lowered dosage. The skipping weeks seemed to have more of an impact on my markers than the changed dosage. I know opinions vary on the topic so can imagine it is a very person dependent choice. I doubt there is a 'right answer'. xx

[LadyKatarina in reply to TeddyChowChow]

Check out this site--all the research here was done by MBCers. They did a big study and presented it at the ASCO meetings. Even the FDA is now touting the line: "Less is more!" They are requiring all new drugs to be trialed at various dose levels. Why do we think that more is better? Best to you!

[Alnmouth in reply to LadyKatarina]

Thanks

[RedAzalea]

Please have your oncologist order a chest CT scan and out-rule “ Interstitial lung disease” or “pneumonitis.” These are 2 very serious sideffects of Ibrance. Several people on this forum have suffered from it. You can read a lot in archived posts

For Verzenio fatigue, I use low doses of Ritalin and Adderall so I can work. But B12 shots sound great and healthier if approved! Good luck and congrats on the 5 years😻

[Alnmouth in reply to RedAzalea]

I get 6monthly CT scans of chest and abdomen.I also have a large diaphragmatic hernia which I think could be causing some of the problems

[Alnmouth in reply to RedAzalea]

I have literally just had one

[BettyBoop3000 in reply to RedAzalea]

You use Ritalin AND Adderall both?

[RedAzalea in reply to BettyBoop3000]

hey there,

I take nothing every day, or consistently. If I have to work a very long day, and I’m starting early, I will take a time release Adderall.

I use both as they serve different functions. Ritalin can be taken slightly later in the day and it won’t interfere with sleep. The time release stimulants…you have to take early in the morning and it slowly hits your system. Time release is great if you have a long day! Whereas Ritalin wears off much quicker.

Most days, if I take something, I will take 5 mg of Ritalin. Often, if I just need a bit of a pick me up, I cut the 5 mg in half. Also, if it’s later in the day, around 2 PM, I take a small part of the 5 mg as it can interfere with sleep.

I microdose all these drugs. Occasionally,I don’t use the full capsule of the 10 mg time release. I only use part.

That said, if I’m really tired, didn’t sleep well, I will take the full dosage. The key is to find your rhythm and go with what you need….

As I mentioned, I never take these drugs every day, so dependence never develops.

Maybe there’s natural alternatives. I hate to advocate more drugs for our overtaxed livers.🥱🥱🥱My oncologist is opposed to all herbal, Chinese, medicine, and most vitamins. She claims that a lot of these things can interfere with the absorption of the cancer drugs. Therefore, I really don’t experiment or take anything holistic. But frankly, I don’t know what the optimal thing to do is. I am just following orders….But that doesn’t mean other people should. I just don’t have the bandwidth to research it all.

Best of luck

[Andersl]

I agree with the others about getting the shortness of breath checked out. I'm in the UK, stage 4 from diagnosis and currently on Kadcyla every 3 weeks. I feel fatigued for a few days after treatment but my energy levels get back to normal a week before the nextv3cweekly cycle.

I'm HER+, HR+, ER+. I'm 4 years + from diagnosis. I only took Letrazole for a few months. Side effects were horrible and I found research that said if you're post menopause there's very little benefit. Just mentioning this in case it's an option that may help but talk it through with your oncologist first..

I'd be pleased to hear what the outcome is.

Take care xx

[Justme153]

Please get the shortness of breath checked out !My husband and I both have cancer and we where told that cancer puts us at a high chance of blood clots. When my husband started feeling a slight bit breathless walking up hills he chalked it up to getting older. Not!!!!! He had blood clots in his lungs . We are lucky he survived. Every doctor we saw then and since has told us people dont survive the type of blood clot he had . He had a large saddle pulmanary embolism! ( Now this is after he waited for over a year thinking his breathlessness was old age. ) So go get checked rule out blood clots in your lungs!!!!!!

[HbbM in reply to Justme153]

how was the blood clot diagnosed? Glad they found it!!

[Justme153 in reply to HbbM]

He collapesed in our kitchen . I called the ambulance at the emergency room they did a D-dimer test and CT scan when they saw what it was they shipped him to pittsburgh . They thought they where going to have to do an emergency operation of putting a wire up through a vein and into the lung to break it apart. But the blood thinning medication did the job . He has to stay on it for ever.

[Northcarolinafighter]

yes! My counts were low and I had to stop for a week, so I know what u mean. I have been on that protocol for 2 years. So this is what I did. I did a lot of research, trying to figure out how to boost myself up. I found a protein powder that is vegan, I watch for soy and sugar. This has hardly none or non at all. It has folic and vitamins with it, in just one shake. I feel energized and I have get up and go off the couch. Natures bounty. I didn’t want to take more pills, so this works out great. It worked for me anyway. I’m excited to see my numbers now. And I have it with unsweetened almond milk, not water for more nutrients. It’s at CVS

[CLC-52]

Yes! Have you ever gotten acupuncture for fatigue? Helps with my shortness of breath too. I also get B12 and CoQ10 shots (good for our hearts) which also helps with energy. It’s a great combination for me.

[Aquadog]

You're doing great getting to five years! I also have a BC my oncologist called "indolent" - very slow growing (for now). I'm just over six years on Ibrance/letrozole and was on 100mg of Ibrance for over five of those years - don't fear reducing the dosage. For many of us it's the only way to stay on the drug because of side effects.

Six months ago began having regular trouble keeping my neutrophils up and the fatigue was debilitating. (There is some research that indicates long-term use of these drugs can result in new and/or heightened side effects.) In January I changed to 75mg Ibrance and I take it with letrozole at 8:30 at night. It has made all the difference in controlling my afternoon fatigue. You didn't say when you take your meds, but perhaps lowering the dosage/changing the time you take it could help?

I don't have any trouble with being short of breath, but I know both letrozole and Ibrance can cause problems that way. Did you talk to your doc about it? A lower Ibrance dose may help with that, too.

Sending hugs

Susan

[Beattheodds]

If misery loves company then I’m right there with you! I’ve been on Ibrance for 3 1/2 years with progression of lung Mets one year ago so changed from Arimidex to Faslodex. Did notice less tired on Faslodex but still dragging myself through the day. Onc lowered dose of Ibrance to 100mg but won’t go any lower. I’ve noticed lately how quality of life is directly related to my inability to take part in activities. Guilt occurs since I “should” be “happy” that there’s no progression of cancer but it does get me down. Sorry I don’t have any suggestions to help you with your fatigue and if you find any please let me know.

[Jaynikan]

Check your vit D and platelets .the platelets reduce when you take ibrance especially towards the end of schedule i take food that helps in increasing the platelet nevertheless it never reaches the required level .i take homeopathy medicine which has papaya leaf extract which helps to keep the level and tiredness under check

[Fiercefighter13]

Could be thyroid, or low vitamin D, or low B-12, folate? Out of breath can also be low red blood cells, anemia. Best thing to do is talk with your doctor and follow up with blood tests and possibly another scan to be sure? Hope you figure it out and that it's easily corrected. Take care!

[Merma]

Hi,

You didn’t mention your dosage, but when I went from 125 mg to 100 mg, it made a big difference. I’ve been on Ibrance for almost 5 ½ yrs for metastic endometrial cancer. I swim 3 to 5 times a week and also do synchronized swimming.

What I notice is that the side effects sort of build up over the years. For instance, I get more skin bacterial infections now. For the fatigue, I try to manage my energy levels and rest when I need to. I love swimming and being with my grandkids, so I plan my days around what I want to do. There are trade offs, but being in remission is also a good thing.

[NPmary]

Your doc might want to grt a chest CT.

[lovnmycat]

hi Alnmouth,

I’m very glad to hear you are still having no sign of spreading.

I’m also on Ibrance and Letrozole and suffer from fatigue but I’ve had a lot more energy lately. I make it a point to drink extra water, and although I do t always feel like it I try to stay active with walking. I also take 20mg of encapsulated pure brand melatonin at night. My Dr. told me it can also help with cancer patients but noticed that brand in the encapsulated form does not make me feel groggy in the am. No side effects so far.

Hope this helps.

Cj

[Dragonfly2]

hope you have found some relief by now.! I too suffer from breathlessness but my blood numbers show low red and white blood cells…s the red cells can’t carry enough oxygen if I pick up the pace in walking etc. I have improved lately because I am using alternative dosing…five days on and two days off without a break …in a 28 day cycle you virtually take the same amount of pills…but that two day break really makes a big difference in how I feel and my endurance is much improved. I have posted on this before…search for alternative dosing IBrance.

Best wishes