Hello lovelies. I'm 7 1/2 years into my first treatment protocol. Currently on 75mg Ibrance (three weeks on, two off) and letrozole daily with Xgeva shots quarterly. My neutrophils haven't been great - never over .9 and occasionally .6 or .7 but my doc doesn't think that's too important. He doesn't test my tumor markers because they're not reliable (they were in the normal range when I was diagnosed). While the drugs are keeping the cancer at bay (very grateful for that), I am dealing with pain in my feet, hips, and legs and heavy fatigue in my last week of Ibrance. It's beginning to affect my lifestyle a lot and I've talked to my oncologist about it. He has suggested waiting one more month before discussing a change. One part of me hates the idea of changing, another is hoping I might have a better quality of life.
I'm not asking for medical advice, but has anyone made the jump from one drug combo to another to improve side effects and did it help?
Thanks for any input or ideas.
Susan
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Aquadog
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I’m on Verzenio and Faslodex injections once per month for the last 2 years. I got 5 years on Arimidex so I can’t complain. I have been thinking of talking to my Onc about maybe going back on Arimidex for a while. I was on Xgeva for 5 years until I developed ONJ, stopped then had my spine collapse a bit and another couple of fractures. It’s a dilemma is it not. Scared of stopping but would like some normality. I expect that’s just not possible. What are your thoughts going forward? I had to reduce the dosage on Verzenio from 150 to 100. I wonder if a further reduction might be the answer sigh. Good luck Chris
Hi Pachira! I’ve been on Verzenio and Faslodex for almost 3 years after progressing on Ibrance and Femara. Because of terrible diarrhea I ended up reducing my Verzenio to the lowest dose which is 50. I still do get diarrhea but not nearly as bad as it was at the higher dose and I feel ok. I had scans last week and no evidence of active disease.
That’s great news! I’m glad you’re still doing well. I’ll have a wee talk to my Onc when I see him in September and see if he’ll let me go down. I did ask him once before but he wasn’t amenable then. Thank you for the input Chris
wow - just wow that you’ve been doing so well. I’m not there yet so haven’t any suggestions re meds but maybe you could do an inventory of daily routines - activity, , table tennis/games, food, rest times, times of your meds/supplements etc etc to see whether there’s a work around ie new activity or 10 min power naps without changing meds to counteract the fatigue and aches
I am happy you have been able to stay on this protocol for so long. That is amazing. I am almost 4 years into treatment with 125mg Ibrance and Letrozole. I have not had really low neutrophils and my tumor marker is slightly above the normal range. I am not on Xgeva as I was worried about the side effects from that. I have recently been having some sciatic nerve pain on my left side but it has not stopped me from doing anything and my last scan was clear. I do monthly massages, take epsom salt baths a few times a month and do daily exercises, which seem to help with any pain I have. I'm glad you are having good results with your treatment but sorry that you are now experiencing pain and fatigue in your last week of Ibrance. Before making a change in the treatment protocol, could you maybe ask your doctor for ideas on complementary things like massage, acupuncture, magnesium that might help with this symptoms? If the treatment is keeping the cancer away, I would not want to change that protocol unless I had tried some alternative things that might help. Best wishes to you. Sending hugs and prayers for some ideas from your doctor.
months . My side effects come and go but I do my best to cope as the alternatives seem to have more potential side effects. I don't mean to minimize what you are going through, just my opinion.
I'm so impressed that you have had such good results.Although I am grateful for where I'm at and hope to be on this protocol for as long as possible, I have wondered about long term side effects. We are probably just getting to the point where a single protocol for so long is becoming more common.. Hopefully new readers h and studies will address this issue.
My reading of breast cancer research suggests that ribociclib (Kisqali) in combination with letrozole works well for many breast cancer patients in middle age. I've been on it for five years, and my cancer markers remain in the normal range. About two years ago, I gradually changed meds (both meds) to 5 days on (weekdays) with weekends off. On this consistent schedule, my neutrophils returned to a reasonable level, and I didn't experience unusual pain or fatigue. I wish more oncologists would consider this more balanced approach to ongoing medications.
Hello Aquadog, I am wondering are you on any pain medication for your feet, hips, and legs?Are you on letrozole too? I get when it's painful and the pain keeps you from being able to do anything. I am understanding that you really don't want to change your current treatment? I am on Ibrance 100mg and letrozole right now. And letrozole gives me stiffness and joint pain but moving helps me. On 100 mg of Ibrance I feel no fatigue like I did. So I understand the fatigue I had an overall not feeling good on 125 mg of Ibrance and like you low neutrophils that stayed low too. With you being in the lowest dose of Ibrance what is your next line of treatment? And what would be the possible side effects of that protocol?
I am currently on gabapentin, Advil, Delta 9 and the occasional hydrocodone for pain. It works somewhat. I don't really want to change my treatment, but even my husband (my biggest cheerleader and support person) agrees it's beginning to affect my daily living. In May we moved from Texas to Western New York and into our dream home that we built from the ground up. Our future was to include a lot of exploring and hiking, but there's no way until I get all these side effects under control. Not feeling sorry for myself! I may have to accept this reality and I'll learn how to work around it all, but if changing medications is the answer, I'm all in.
So happy to hear you have been able to get 7 years plus on your first line treatment (how fantastic), unhappy to hear you are dealing with pain and fatigue.
I am 8 years younger than you and almost 2 years on max dose Ibrance, letro and faslo (mets to right lung, markers in normal range). I am not as far down the road as you but am finding stiffness and some joint pain an issue already.
For the moment I am able to manage all stiffness and pain by exercise.....(apologies if with your pain you can't manage exercise but hoping you may find my experience helpful).
I have had to change my work hours to facilitate my exercise regime to help stiffness etc. I start with swimming /cycling/walking first thing in the morning and weights/yoga during afternoon/early evening. Heat helps too so I use the sauna in my local gym when I can. Honestly this all feels like my other full time job but it really works! (good /for my mental health too) If I don't do this, I find myself in trouble pretty quickly with stiffness/pain etc. (Also interested to read of MSK clinical trials being run into the (hopefully positive) effects of exercise on tumor growth. I see that you hike etc so hope I am not stating the obvious here.
I hope this is of some help, very best, hope you get back hiking soon, Kahe
I'm just over 3yrs since first diagnosis de novo. I was switched early on from Kisqali to Ibrance. In my case the first treatment (Kisqali) affected my liver function but scans showed that even after only 3mnths my primary tumour had shrunk considerably....on this basis my oncologist said that this type of CDK inhibitor medication was working for me and once my liver enzymes went back to normal I was switched to Ibrance....which has so far created no liver complications.
It's my understanding that the 3 types of this treatment ,Ibrance ,Kisqali, Verzenio are interchangeable and each has varying side effects.
Also....I forgot to mention....when I asked my oncologist about the joint pains that I get she said its the Letrozole and Zoladex implant...that both block estrogen.Some others here have switched brands or used alternative types with lowered side effects...so may be discuss changing the hormone treatment rather than the CDK inhibitor?
As I'm a bit younger I'll have to continue with the ovary function inhibitor (Zoladex) for a few more years, but after that she said that once I'm confirmed to be fully menopausal she will stop the monthly implants....and that might ease some of my joint issues.
Luckily I find my aches shift about and have been manageable without any pain meds.
Good luck to you and congrats on your move to your dream house!!
That sounds like quite an undertaking!!
I'm about to move in the next few months ....have to start packing and scrapping soon!
Are you stable or NEAD? I've been stable for 7 years. I stopped Kisqali after a year due to SEs and stayed on Letrozole alone for years. Kisqali /Letrozole resolved all tumors except one bone met. I had high dose radiation to the bone met, and then remained stable for six more years. You can choose to just stay on an AI.
hi. Such a good response. I’m on the same They delay me in anything lower than 1. So they start back on Ibrance with a .6 or7? I have to be tested and then start if 1. So he’s not concerned that’s interesting.
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