Share your story ask questions?
How long have you been on ibrance? I... - SHARE Metastatic ...
How long have you been on ibrance? If you care to share other details, like type of Mets, side effects, tolerancec etc I’m moving to California in June & think I’m going to either Stanford univ or UCLA (both “Comprehensive Cancer Care” centers. Right now I’m @ MGH (Massachusetts General Hospital) & DANA FARBER CANCER INSTITUTE. Any advice on California docs is welcome-I’ll be living in San Luis Obispo (Central Calif.)😍 Also any advice on teenagers I have 17 yo boy who is a senior with the typical issues of that age plus my do & moving to Calif.? Thx all!!
Written by
Bailey3266
To view profiles and participate in discussions please or .
Read more about...
15 Replies
•
Hi there
I have widespread bone mets and started Ibrance June this year ..had to stop the 125mg dose after 2 weeks due to low white and red blood cells..I started the 100mg dose in July..taking iron folic acid and B12 for the anaemia which has helped..white cells are borderline but my oncologist doesn’t seem concerned..I guess she would rather me take the drug than give up on it
I feel better now I’m not anaemic..my main problem is pain from a fractured vertebrae which is nothing to do with the Ibrance
All in all I feel ok on it
Good luck if you’re starting it..don’t listen to people complaining about side effects..you’ll be fine
Barb xx
Barb,
Thx. Thx for sharing your situation & for encouragement. Sorry to hear ur in pain; hope it’s manageable. I started ibrance /femara combo on 11/17 (idk how many cycles that is though).
I have Mets in lymph & lungs and ibrance has improved that with little s/e other than low wbc ~4.7 (knock on wood)! I think the femara is worse side effects-wise; but all in all I’m glad to be on this combo and tolerating it well (more than I’d hoped for; when I first heard stage 4...well you all prob know the feeling!
Just thought if we all shared stories of length on ibrance and types of Mets side effects & good/bad news this could be nice support thread?
Thx again! Happy holidays to all.
I will be starting Ibrance next week. I just posted almost this exact thing. I’m on Letrozole and have minimal side effects so far. Will you be starting this soon? I have it in my plural fluid. I am 7 years out from original dx.
Sunnydaz,
I started 11/2017 Ibrance & Femara. My original DX was 5/2010–so we have similar course. Wishing you well. I think I’ve read that some ladies have been on this drug regime past what I see as the average time of 22.4 months & I think new data is out or just coming out @ conference in TX saying 27 months is now average. I also think I saw someone who was in initial trial sometime in 2015 so that’s ~ 3+ years... I know we’re all different; but that’s very hopeful. & immunotherapy is also hopeful; but I don’t know much about that if it’s still in trials or approved yet?
Well thanks for sharing & keep us posted how you’re feeling. (If it’s better for you I can reply to your thread and delete this one; so info can go to one place?
Wow! I would love to get 3 or more years out of this. Did you have plural effusion too? I will have my 4th thorosentesis sp? tomorrow. I hope it starts working fast and continues.
I’m still figuring out how to navigate this site lol Let’s definitely keep in touch as we start this journey. If you think it would be easier definitely post to my thread. Sending positive thoughts and prayers xo
Hi there
I had a couple of pleural effusions at initial diagnosis of mbc ..these have now disappeared..I have widespread bone mets though which are apparently stable..been on Ibrance since June
Barb xx
Hi Barb,
Did they need to drain your lung? Also did they tell you why you had plural effusions in your lungs if it’s bone mets. They only found cancer cells in my fluid. I’m so confused about it. The draining process has caused a lot of pain in my ribs on that side. I dread having it done again tomorrow. I have to sit up to sleep because of the pressure.
On top of everything I think my 7lb maltipoo ate my Letrozole tonight. I had it on the side of the couch arm and don’t remember taking it! Ugh
Hope everyone has a good evening
Hi there
I was fortunate that my effusions were small so didn’t have to be drained..I was breathless though but feel better as I can walk further now
Naughty doggie eating your letrazole..hope they don’t make him/her?..weird!!!
Barb xx
🙀
I have been on Ibrance and Letrozole combo since July of 2015. It had just been released in February of that year. I had bone Mets to left shoulder and some undetermined lesions in the liver. I was 8 years out from initial dx. My local onc started me on taxotere and zometa immediately. I had one dose of taxotere then moved to a university onc. They stopped that therapy and started me on the Ibrance. I have done very well on this therapy and hope I get more years on it. I do take Xgveva every 2 months for the bone Mets. Prayers for you on this journey.
Wow! Amazing! Glad to hear & thanks for sharing. Prayers back at you! I’m switching to university care in June (I added addendum in my original post).
So this February will be 4 years; WOW! Thank you for sharing. Congrats & prayers back at you and all who are here.
Hi Bailey!
I was on Ibrance / Letrezole for about 40 months and recently switched out the Letrezole for Faslodex, remaining in Ibrance. I have widespread bone mets and was seeing a slow increase in "avidity"/uptake rate/"heat" on PETs with modest increase in size of existing tumors (no new ones, though), hence the change...
Side effects of Ibrance are minimal; fatigue, especially during the week off; bad hair (! 
); and very low ANC (absolute neutrophil counts, as low as 600), but I've stuck with the 125 because based on no science at all (! ), I just sort of feel like more is better.
Re: kids, yes, it's certainly a challenge. I've remained sanguine about the medical stuff, counting myself lucky at every stage, but my children, about your son's age when I was diagnosed and now in college, have both suffered a bit, e.g. anxiety. As much as I regret what they are going through - not to mention what will come - I do see a silver lining in that most of life's challenges and heartbreaks are learning experiences and result in personal growth. But it still sucks! They worry about me, and it breaks my heart when I see a flash of fear in their eyes. I am always honest with them and assured them that if they hear no news it's because there is no news.
One way they've dealt with this is that they started an online business selling really wonderful care packages that people can gift to their loved ones undergoing treatment. They did all sorts of research and trials to find out about side effects and what can be done to counter them. I think it has been therapeutic for my kids and their hearts really go into packing and sending each gift. This is not a "plug" -- we patients are not their target market -- but the business is nightingalecarepackages.com
Re: California. I'm based in Dallas but, in addition to my local doc for monthly labs, zometa infusions, etc., I have been seeing a doc at Sloan Kettering in NY for a couple of years. I had discussed with her the possibility of switching my secondary Onc to LA, in large part because the climate is better for my regular visits (!). My doc and wonderful nurse encouraged me to see a doc at Cedars Sinai -- not a comprehensive center -- but they said that Dr. Heather McArthur, who had worked at MSK for years, was simply amazing. I don't know that I would give up the comprehensive cancer center for a particular doc, no matter how amazing, but I thought I'd mention it.
Best of luck to you! I envy you, moving to California! I'm sure you'll get great care out there!
Lynn
Hi,
I was on Ibrance and Letrozole but unfortunately it didn't work for me and we have found that the hormonal therapies are working for me so now am on Xeloda which is an oral chemotherapy. My doctor is local for me but is associated with UCLA. I like that as they have so many resources. He has indicated that there is another drug that can be added to a hormonal therapy for people who it hasn't worked for in the past. So I always feel like he has so many other options if one is not working. I live in Orange County CA. UCLA is in Westwood and excuse my french is a bitch to get to but if you have a local doctor like mine who is associated with UCLA then you might be okay. Now sure how far SLO is from Palo Alto where Standford is located. Thinking you couldn't go wrong at either facility. I love SLO! Hope you like it too.
Merry Christmas,
Kim
Is there anyway your son can stay in Mass. and stay at his school? Mid senior year move can be hell on a kid! I speak from experience! My father left my mother about six weeks before I moved across the country to go to college and my mother had to move to find work and that meant moving my brothers in 11th and 7th grade. It was brutal for all of us. I don't know how parents divorce and mother with cancer compare in terms of stress on the kids, but seems to be as though both can seem like the floor being dropped out from under. Does your son have enough credits to graduate early, end of this semester? Then start college rather than high school in California? I grew up in northern California, birth thru age 14, and I know it has changed alot since then but I suspect it will take some getting used to for all of you. Different weather, different traffic patterns, different style of housing. different ambiance. A factor to consider in deciding which cancer center to go to might be to drive from where you will live to each and see if there are major differences. You may really find driving in Ca much different than driving there in Mass. If you son is not seeing a therapist of some kind, that would be a good idea for him, too. If he resists, push him to agree to six sessions and then you'll accept it if he does't want to go back, and try to help him find somebody with experience with older teens with a sick parent. I hope that a year from now your family will feel good about this move!
