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Is anyone having side effects of the Ibrance, Faslodex and Xgeva?

Gibbsbet profile image
11 Replies

I'm starting my 5 month of IBRANCE, Xgeva and Faslodex for Mets in my lumbar, sternum and pelvis. I Had 15 radiation treatments to the lumbar prior to starting the treatment.

I was diagnosed with stage 3 breast cancer w 9 malignant lymph nodes in April 2013. 2 surgeries then chemo and 26 radiation adriamycon, taxol and cytoxin.

I am 70 years old and wondering if anyone else is dealing with the weakness, wobbliness and leg and body aches. Overall I'm doing ok but some days I am just too tired to do much. I've always been strong and don't give in to sickness.

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Gibbsbet profile image
Gibbsbet
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11 Replies
darlenejulien profile image
darlenejulien

Aug 2nd I start my 12th month on Ibrance. So far my only side effect has been fatigue. I had stage 3 breast cancer March 2014, went through a mastectomy then chemo & radiation. Aug. 2017 they found that it metastasized to the bone in my spine. So far it's been controlled. Lately i'm having issues with heart burn (I'm on protonix), I do have restless leg syndrome but they have put me on meds for that. Not sure if that is part of a side effect from the meds. All in all I feel pretty good for 63yrs old!

Gibbsbet profile image
Gibbsbet in reply to darlenejulien

Thank you for your response. I've also noticed my skin is getting so bad ,. Looking so old lately. I'm wondering if the Faslodex is causing it.

SeattleMom profile image
SeattleMom

Hi, Gibbset!

I have been on same protocol as you since December 2017. I will say that I experienced the "wobbliness" you describe at different points in the first few months, along with aching knees. This has seemed to subside over time.

As for the fatigue, it has simply become an occasional part of my life; and I do give in to napping to restore my energy. Some of the side effects are occasional; others I have learned to deal with on a daily basis.

God bless you! XO Linda in Seattle

Gibbsbet profile image
Gibbsbet in reply to SeattleMom

Thank you Linda

Clair19 profile image
Clair19

I can only talk about the Faslodex, I’m on my third month. I just figured it was the cancer, but I think it’s the Faslodex and not the cancer. The reason I say that is because last year I had no treatment and the cancer was just diagnosed but I know I had it. I was working out going on vacations and felt great until the official Pet scan was read. It might be in my head but I don’t think so. After I had 6 months of the Red Devil I lost weight and felt horrible. I’m younger but still have a hard time doing and dealing with minor problems. I hope you get your strength back, maybe some meds make us feel lathargic too. 🙏

in reply to Clair19

It's the Faslodex, Clair. No question! It comes with the territory! Hang in there! 🙏😁

SusieIM profile image
SusieIM

It's normal to feel tired, hang in there.

Klamato profile image
Klamato

I get tired and weak some days but overall this treatment is better than the terrible chemo you experienced. Hopefully these treatments work. Take a couple of Advil and read a book on those bad days! All will be good. God bless!

4thTimesTheCharm profile image
4thTimesTheCharm

Sorry to reply so late after your post, but I'm new to the blog. Yes, I too understand the wobbles you feel. I am 65 and on my 4th treatment of the Faslodex / Xgeva / Ibrance protocol you are on.

The brief on my cancer history is 2001-Triple Neg BC (No node involvement); 2014 - E+ Bc (surg for "repair of radiation damage" so no nodes removed-but turned out to be BC); 2016 again E+ BC (24lymph nodes positive of 27 taken); 2018 Mets to bone - pelvis, sacrum, femur, thoracic ribs. Yes, I had all recommended surgeries, chemo, radiation therapy. After the 3rd BC, I was on Anastrazole, then Letrazole and couldn't stand either one for the joint pain. And finally Taxomifen, which obviously did not stop progression. When I was diagnosed with MBC to Bone, I finally quit my job.

Fatigue - daily, sometimes I take naps. Night sleeping is sometimes impossible without Ambien or something similar. Knees, hips, shoulders, all joints scream at once, and with no distraction (like working) - sleep is a challenge.

Wobbliness: Yes! and I've resorted to using a cane if I go out to store or other...but I can still make it back and forth to the mailbox down the drive and to the chicken coop without it. However, shortness of breath is also a concern and seems to be getting considerably worse. (I HATE using the cane, but concerned that my fatigue and lack of proper balance will lead to a fall, which will lead to a break...etc. Hurts my self-image as the doer, and hard-worker, the capable one to initiate things!)

Skin: dry as paper and easily irritated. Any sort of bug bite seems to be a major assault that takes more than a week to calm down.

So- What helps? Exercise...don't give up walking even if a cane or walker is necessary. We can't afford to let our muscles to lose any more strength! I attend a "seated strength" exercise class which helps me maintain mobility in upper body in general without over-stressing my hip joints.

I also use Gabapentin and Celocoxib (Celebrex) for joint pain. And sometimes I just give myself permission to simply quit and lay down just to rest. I try to not think of it as "giving up" but "revving up" for my next self-assigned task.

Lotion my hands whenever I can (I have bottles everywhere!).

Sorry for the length. Hoping and praying that by now (months after your original post) you're feeling some relief.

GreatMamy profile image
GreatMamy

I'm taking Ibrance/Faslodex/Xgeva. Ibrance/Faslodex for at least 5 years. Weakness mainly in the legs, shortness of breath (I also have tachycardia). Until this past spring 2018, I had trouble holding myself straight, walking even short distances and had pain in both legs that settled eventually in the right leg and was fast making me insane... After almost 2 years in pain, my son questioned my doctor about CBD oil who quickly admitted that he had a dozen patients using it! I immediately bought some and the pain relief has been almost miraculous. I am not pain free but this makes the difference between light and day. I have no taste or smell and was also losing weight due to lack of appetite. Cannabidiol oil (CBD) is also good for that. I've gained 10 lbs in the last 3 months! There are no official studies but people everywhere anecdotally report improvement in their life. With practically no THC, it is legal everywhere.

Exactly the same as you, except more. It just comes with the program! Being tired is worse than all the pains because I just can't get anything done most of the time! Prayers for you! Hang in there! I'm still laughing!!😁

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