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[Olga1962]

Hi i have just joined, was diagnosed with breast cancer in June this year, within a week i was told it had already spread to my bones so no cure but could be treated. I have been on letrozole and denosumab injections since then and have now just started ibrance, worried about side effects and how soon do they kick off

[Tap321]

Don’t worry! Ibrance is an amazing drug. Some have a lot of fatigue. It was hardest for me the first few weeks and then got better. I hope you do well on it.

[darlenejulien]

I'm on my 2nd cycle of Ibrance 125 mg & the only side effect I have had is fatigue. But then I'm always tired since I'm also an anemic. I've had no ups or downs while on it or off it for the 7 day's. I hope you do great on it!

[Boogitymom]

I’ve been on Ibrance and letrozole since March 2016, mine had also spread to the bone, I’ve had no progression of the cancer. Have had fatigue and some joint pain as others have. But overall the side effects have been minor. It does seem to be the new miracle drug with many positive results. Sending prayers your way.

[Hidden]

Good luck and prayers your way. I just finished cycle 7. The 3rd week for me is pretty much a wipeout due to fatigue. I'm consistently on 75 mg with 2 weeks off because of poor neutrophil recovery. We'll see what the next set of scans say...

[tmills64]

I also have mets to bones. On my 9th cycle of ibrance and letrozole. Some fatigue and joint and muscle pain, Nothing to bad at all. You will do great!

[Barbarasue in reply to tmills64]

I also have mets to the bones. I have been taking ibrance since 3/17 and letrozole . Alot of fatigue And recently my hair is falling out. Thinking it has to do with the ibrance. My doctor doesn’t let me take it again after ther 7 day wait period until she checks my blood work. Usually it’s seversl weeks later before I take the ibrance again. I have avascular necrosis in my hip and the pain is unbearable. The meds just mask the pain for a few hours any suggestions.

[Magz52]

Hi Olga, I’m sorry to hear about your breast cancer with bone mets. I’m sure you know that you can live with this for many years & if you can manage your pain well, you can lead a near normal life. My bone mets were diagnosed 7 years ago. In addition to pain relief medication I have Anastrozole. I used to have biophosphate infusions monthly but when Denosumab was sanctioned for use in the UK my oncologist changed me over to them. That must have been about 5 years ago but I can’t exactly remember. I haven’t suffered any side effects at all until recently. I was very much aware of the importance of good dental hygiene. Likewise, the potential problem with osteonecrosis of the jaw. So when I started to have some pain in my jaw, my Oncologist stopped my Denosumab injections & referred me to our Maxillofacial unit. Some pieces of bone had made their way to the surface of my gum in the lower jaw. Also, there is a loose tooth in the same area. I was given a mouth guard initially to prevent me biting down on the problem area in my sleep. When I had gone 6 months without Denosumab, the Maxillofacial dental surgeon removed the pieces of bone which had become detached from my jawbone & had made their way to the surface of my gum. She said if the wound heals well she will remove the loose tooth at the next appointment. I should then be safe to restart the Denosumab injections as the benefits outweigh the side effects.

I hope this helps you Olga. Good luck with your treatment. Enjoy life to the max. I was unfortunate to have a fall & fracture my hip 3 years ago. As it was not displaced & due to the cancer in my femur, the orthopaedic surgeon said he would leave it alone unless it gave me problems. Unfortunately I had another fall which I ignored & my hip is now displaced. It is not only causing me pain but it has caused my body to become badly distorted & is making standing & walking almost impossible. A hip replacement has been discounted due to the cancer in my femur & the orthopaedic surgeon has told me to accept I am now wheelchair bound. I only add this to make you aware of the possibility of bone fractures & the importance of being thoroughly checked out should you have a fall or anything.

[PJBinMI]

I'm a long termer with E + bone mets. Some of us with bone mets only do well for a long long long time! I'll hit the 15 year mark this coming March, and bone mets were found right after I was diagnosed, too. It's quite a shock to get this diagnosis. But if we are stuck with MBC, bone mets only that are E + is probably the best profile! The estrogen factor gives us treatment options that are usually easier than chemo, and we don't generally die from bone mets since the bone meds have been created. So there is alot to be hopeful about. Do let your onc know immediately if you have breathing problems.

[Terilyn12]

I have mets to bones and lungs - on my 10th round. I am tired most of the time and low neutrophil counts .. (on 125 for Ibrance). My scan last month showed drop in most areas so it is really worth being tired!! You will do great. !