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Aches, pains on Ibrance + Letrozole

Kats2 profile image
37 Replies

Hello. Does anyone experience all kinds of aches or pains in muscles or anywhere else while taking Ibrance and Letrozole?

I’m ending 3rd cycle of 75 mgs of Ibrance and the area towards my left shoulder is killing me! Seems this whole left arm aches upon moving it.

Also I’ve had pain on the right side of my right foot and now left side of left foot. It actually causes me to limp. The doctor says it’s NOT neuropathy.

Then, out of the clear blue, my left calf started giving me intense pain like severe cramps. I have to stop walking and rub the area til the pain subsides. I complained so much about this aching calf that I was sent for an ultrasound to rule out a blood clot. I haven’t heard the results yet, but it seems that after 2 weeks of agony, the pain is subsiding a bit. It’s so crazy!

I’ve never had so many aches and pains in so many different areas. Was wondering if this is common being on oral chemo drugs?I didn’t have this with Xeloda or Afinitor.

Has anyone out there experienced this bizarre achiness and pain? Do you use cream on the areas and pain meds? That’s what I’ve been doing, but it’s so aggravating!

Thanks for any info on this condition. Kats2

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37 Replies
demanos profile image
demanos

Make sure you are staying hydrated. Take magnesium for the muscle cramps. You can also buy magnesium cream to put on your legs. Join pain is common on these meds. The secret is double hydration! I also take a Motrin every 4 hours. Good luck!

Kats2 profile image
Kats2 in reply to demanos

demanos,

Thanks for the suggestion of the magnesium cream. Also the double hydration. I usually drink lots of water throughout the day, but I haven’t been visiting the bathroom excessively, so perhaps I do need more liquids.

Is Motrin stronger than 400 mgs of Ibuprophen? I also have a prescription for Oxycodone .5 mgs which I’ve been taking off and on.

Anyway, thanks for writing with the suggestions. It’s appreciated! Kats2

Tap321 profile image
Tap321 in reply to Kats2

Motrin and ibuprofen are the same. I take glucosamine confronting with MSm and helps aches and pains so much.

Maludagui profile image
Maludagui in reply to Tap321

Hi. I take glucosamine with chondrotin and help a lot too

Tm7777 profile image
Tm7777

I take 3 Motrin at 5am every day relax a while than get on with my day. I take it slow if I don't I have aches and pains. I do take pain meds but only. It's my last resort. I'm heading for 2 years with mbc I've only took pain meds 4- 5 times. Moist heating pad works wonders.

Partia profile image
Partia in reply to Tm7777

Where are your mets?

Partia profile image
Partia

It has to be the letrozole doing that. It is known for causing awful pains. I too kind of limp when I get up on the right side. It hurts your bones, joints and muscles. Like we don't have enough problems!!

Kats2 profile image
Kats2 in reply to Partia

Partia,

I totally agree with you. With bone mets already, who needs more pain? I need to find out more about Letrozole. On top of this, I think arthritis is at play too. Help!

Kats2

Partia profile image
Partia in reply to Kats2

The pain letrozole causes is like arthritis from what other people tell me. I had never had arthritis before so I wouldn't know but from what I've heard it does sound like what I feel now from the stupid Med. But yet this med is saving my life so I can't complain too much. Also if you think it could possibly be a blood clot do not take any type of ibuprofen at all. I had a blood clot from my cancer and I'm on blood thinners and I am not allowed to take Ibuprofen

cancerfighter profile image
cancerfighter in reply to Partia

How are you doing? What were the symptoms of your blood clot? What type of pain? I have been having a lot of pain in my legs. My pain comes a goes very suddenly, very short and moves away to other place in the legs,but sometimes is a kind of pain that stays put but that pain is like my legs are burning inside. I take Ibrance and exemestane and a monthly injection of donusomab. I am worried about blood clots if you ou someone else could answer it would be much appreciated. Keep fighting sister's warriors. All the best to everybody.

Boogitymom profile image
Boogitymom

Yes, I also have random aches and pains, even though my scans show no activity. I’ve been on 125 mg of Ibrance since March 2016. I get severe leg cramps also and the only thing that seems to help is just trying to rub it out and time. I’ve found some relief soaking in an epsom salt bath. Hope this helps

Tap321 profile image
Tap321 in reply to Boogitymom

Would magnesium help the leg cramps?

Boogitymom profile image
Boogitymom in reply to Tap321

I think so, I find if I eat a date every day, the cramps are less

Triciagal profile image
Triciagal in reply to Tap321

Yes, magnesium will help, but there is more than one type of magnesium. For myself I get Magnesium Glycinate at a 400mg dose. If you are bothered at night with try taking this before bedtime. Being a retired nurse I advise folks to get supplements in capsule or liquid form. While a tablet type might be less expensive, our body has to put out a lot of energy in order to break down or 'tabletize' the tablet. Decades ago too many docs pooh-poohed vitamins telling their patients they were useless. The reason the MD group thought this was because tablets would be found floating along the top of a septic tank. So as far as American medicine goes these folks deemed vitamins "useless."

PJBinMI profile image
PJBinMI

When Letrozole stopped working for me, after almost five years, and I stopped taking it, I was really surprised by how much better my joints felt!

Mimiholl profile image
Mimiholl

To Kate 2

Yes this is exactly my experience . Leg cramps, shoulder pain, aches everywhere. Neuropathy spread from feet and hands to left leg. Don't take magnesium unless your blood level warrants it.

I use joint flex, it's great. I'm also on meloxican for my osteoarthritis, and xjeva blood thinner so I can't take Advil or anything. But as long as ibrance and letrozole working, I'm going to live with side effects.

I try to walk at least a mile a day and take balance and core stregnthing classes twice a week.

Hang in there, I am having all my scans this week trying to stay positive.

Kats2 profile image
Kats2 in reply to Mimiholl

Mimiholl,

I’ll have to look into Joint Flex. Another good suggestion. Thanks. Kats2

Selmac profile image
Selmac

When I was first diagnosed in 2013, after my chemo and surgeries I was put on Arimidex. I could barely walk and the pain was horrific. They switched me to Femara. After a few weeks I was fine. Just switching made so much difference.

Kimr2081 profile image
Kimr2081

My guess is its from the Letrozole but I fortunately have not had any side effects other than insomnia. I hope it gets better for you.

Partia profile image
Partia in reply to Kimr2081

I took Letrozole for several months and didn't have any of the joint pains that I have now. I almost think that it just started building up in me and at some point was just too much

Bluebird77 profile image
Bluebird77

I have body aches and pains, joint pains, and random pains here and there. I was on Letrozole alone for six months before starting Ibrance so I know that it's the Ibrance. Waking up in the morning is the worst, I am stiff and stooped over and everything hurts until I get in the hot shower and get moving.

dianeygirl profile image
dianeygirl in reply to Bluebird77

Me too!

Kimr2081 profile image
Kimr2081

None of that for me but I am starting a new treatment plan because my scans showed that a couple of the lesions had grown. Praying that I do as well with the side effects of these new drugs. Ugh!!

Hokie profile image
Hokie

Hi, I’ve been on 75mg ibrance for almost a year, before that I started on the 125’s for about a year and the 100’s for about six months, I’ve been on letrozole the whole time. I noticed my joints felt like I’ve aged 10 years in the 2 1/2 since diagnosis. My doc said that letrozole affects the bursa in your joints, causing an inflammatory type response. So I take Aleve when it acts up. I’ve found that trying to as active as I can on the good days seems to help my joint pain on the bad days. Mostly it’s my hips and feet, my bone mets is in my upper body so I find it crazy that the pain is coming from other joints🙄 hang in there, just keep moving as much as your body lets you

Kats2 profile image
Kats2 in reply to Hokie

Hi Hokie,

Thanks for your reply. That’s probably what’s happening to me pain-wise. Someone else said that Letrozole may be the culprit. Is Aleve better than Ibuprophen or Oxycodone? That’s what’s I’m using right now. All I know is that physical activity, which I was used to doing a lot, causes me lots of pain all over my body either that day or the days following.

I don’t remember having such muscle and bone pain with the other medicines I was on. I’ll do the best I can, though, since this combo has even the most effective for me so far in bringing my tumor markers down, even on the lowest dosage of 75 mgs of Ibrance.

Thanks again. And good luck with your treatments too! It’s encouraging to know that you’ve been on Ibrance for so long. I hope you continue to do well on it. Best wishes. Kats2

Lisa-n-AZ profile image
Lisa-n-AZ in reply to Kats2

I'm 1 yr MBC, 10 cycles ibrance, letrozole. Aleve works for my daily pain. Motrin rips my stomach up, so not an option. Best wishes. Lisa

Hokie profile image
Hokie in reply to Kats2

my doc suggest the aleve for me, it just last longer than ibuprofen, both work as anti inflammatory meds. Always get an ok from your doc before starting any new meds. A lot of things out there I’ve found can interact with the ibrance. For instance, found out that green tea is a no-no cause of interaction. I do have tramadol prescribed for me, I try to take it only when the hurt increases. The more I read here I’m finding that we all have different reactions to the meds. The only other thing I take is an Advil pm each night before bed, it helps with my insomnia and the aches during the night. Best wishes and hope you feel better

Kate407 profile image
Kate407 in reply to Hokie

Hi Hokie, how did you find out about green Tea interacting with Ibrance? I just saw the post about not eating corn or soybeans if being on HT treatments. So much for eating popcorn (my favorite snack food!) & getting fiber. Thank you for telling us about the Tea.:-!💓

Hokie profile image
Hokie in reply to Kate407

Hi Kate407, I had been reading about different vitamins and effects, my niece works in a company that makes vitamins. Anyway I was telling her about my fatigue and she suggested green tea and sent me a bottle of it. Long story short, I brought it to my onc at next visit to make sure it was ok, she looked it up in some medical reference guide and said no because it interfered with ibrance. So there went another route to beat the fatigue ☹️. I had heard to stay away from soy products but had not heard about corn. What’s up with that? I’m having trouble with eating vege’s because ibrance makes me have serious digestive issues with fiber and I’ll leave it at that. I really miss salads. I’ve found if I eat like 1 cup of iceberg lettuce once a week I’m ok. Spinach nope, mixed leafy greens also nope. Any suggestions? Have a good day

Kats2 profile image
Kats2

Thanks Lisa-n-AZ,

Do you take Aleve a lot during the day or just once?

Do you take anything before going to sleep? I think I under-medicate during the day, then when I get home my back, etc. hurts so much! After sitting in my rocking chair with a heating pad behind me for a while, the pain eases up. But I take 400mgs Ibuprophen at the same time.

At bedtime, I’ll take 1 Oxycontone. Sometimes I’ll take an anti-anxiety pill at that time to help me stay calm and relax for sleep.

I’ll try the Aleve soon. Thanks for writing. Kats2

lynzer profile image
lynzer

Ive been on Ibrance and Fslsodex for about 3 months. I’ve also been getting random pains esp in my shoulders and knees. Sloan Kettering suggested a Fetynol patch for pain. Other than that, nothing has been working. The morning is the worst but after a hot shower and some stretches, I feel much better during the day.

Kelly001 profile image
Kelly001

Yes I have similiar aches that you are describing. The one in regards to your arm. Mine is both arms. I have aches in my jawbones. Also, tingles in my upper back. It is just aggravating. I try and put pain cream relief on them & also take Tylenol but if my scan looks good next week I will ask if I can come down to 100mg instead of 125mg on Ibrance. I have liver mets so I hope this is just aches & pains from the Ibrance/Falsodex combo.

Kelly

PLASEM profile image
PLASEM

Letrozole cause joints pain, I have pain on my hips specially at nights or when I am sitting for long time and I apply pain creams and lotion because pain pills can damage the liver and kidneys, the protein in my urine is abnormal so I try to live ignoring this pain but I switched from Letrozole to Faslodex and see what happens still with pain I got three shots only, take care and God bless all of us

I had cramps in my calves during my second cycle but they’ve passed. Undoubtedly to be replaced by some new ache! Good luck.

shepherdlover profile image
shepherdlover

Ditto on the cramps & misc pains all over, but not necessarily due to the Ibrance and Letrozole as sometimes I've had similar symptoms due to other health conditions. Many of my family members run low on potassium and/or magnesium, which I already supplement daily anyway. If/when needed, I take an extra one of each, + drink pickle juice & use magnesium on the cramp areas. There are many other side effects that occur intermittently, but none of them are all the time. Best wishes to you!

Kdiet profile image
Kdiet

I have had eight cycles of Ibrance and Letrozole at various doses. It looks like I will be staying at 100mg Ibrance. If I do not get my Zometa infusion every three months, I start to get lots of bone aches and pains. The pain erupts not just where the cancer has been but also spots with incipient arthritis. Regular Zometa treatments are very important for me.

Pinkroses21 profile image
Pinkroses21

I’m on Letrozole after surgery, chemo and radiotherapyI had joint pains during chemo to the point I was on morphine and walked with a stick

Now ongoing joint pains with Letrozole after trying alternatives this seems to be the least painful

I try stretching and moving about when I get up to get things moving, not sitting too long else I get stuff and I take cocodamol and naproxen

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