Hello!! My name is Kim I am 40 years old with newly diagnosed widespread bone mets no organ involvement. Started ibrance/letozol today and I am just so scared. Anyone have great success? Or any advice? TIA
New MBC - widespread bone 1st Day Ibr... - SHARE Metastatic ...
New MBC - widespread bone 1st Day Ibrance/letrozol -
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KimberlyB40
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Hi Kim,
Welcome to this site!
I don't have any personal experience with ibrance. My standard of care treatment includes letrozole, zoladex and zometa. But I just wanted to wish you all the best as you start your treatment. I hope you will soon respond to treatment. I was diagnosed with metastatic breast cancer in 2018 with two spots on my spine. Reach out to me at anytime if you want to chat.
Take care,
Sophie 💐
Welcome on here ! I am 57 and in the U.K. and was diagnosed with MBC , de novo , bone Mets , late 2017, and have been on Ibrance / Letrozole for 3 years and 3 months now . I have tolerated this protocol well , so far, and I have been “ stable” for more than two and a half years . I know how scary the initial diagnosis is and it will take time to adjust to a new normal. If you have any questions , please do ask here , or use the personal message option , as many of us on here have dealt with the various side effects , or the lovely ladies may just offer you support . My main tip is to drink lots of water (at all times), to keep moving and to rest when your body tells you to ! Take care! x
So encouraged that you have been stable for so long. Started Ibrance and Faslodex shots in Jan. I have a nodule and fluid on my lower left lung. My Onc said I may be able to be on this regimen as long as 8 yrs before having to make a change. God willing and fingers crossed. 🤞 Thankful that I get scans every 3 months to stay on top of any changes. Stay positive and stay strong!
Hoping this protocol works well for you for a very long time ! Take care! x
Hi Kim, Welcome!! Everyone has different experiences with length of treatment with Ibrance. I did Ibrance/Faslodex for just under 1 year before switching to Xeloda after disease progression. My mets are to my peritoneum so a little different animal, I guess. My biggest problem with that combo was the joint pain from the estrogen blocker. I found that the more active I stayed, the better I felt. I also took some joint health supplements that I found recommended on here. NOW Supplements, Glucosamine & Chondroitin with MSM. Not sure if it really helped but I felt like I was doing something about it when I took it, at least. Good luck!!!
Agree with above as I had similar side effects - lots of good threads on here about this combo.
I have been on Ibrance/Fulvestrant/Xgevia protocol for a little over a year and have had stable scans since beginning it. I have very little side effects. Really just weight gain and hair thinning. My weight gain could also be because before I began my protocol I had a spinal fusion surgery followed by partial hip replacement! I have tolerated the protocol well. I also have mets just to the bone. I know its scary but I wish you great luck...hang in there,
I have been on Ibrance since last May. No side affects except fatigue and I take care of that with a nap! Hope you do well on it!
I have been on Ibrance, Letrozole and Xgeva for 26 months with stable disease (bone mets diagnosed in 2018) and no noticeable side effects. I'm enjoying a good quality of life and I try to exercise every day. I hope it works for you as well. Take care Piera
Hi Kimberly I started ibrance/Letrozole on1st December and I was terrified after horrible time with intravenous chemo .
I’m now on my fourth cycle and feeling great .
Of course you get a low blood count , dry skin and a few aches and pains but I’m leading a normal in general an here’s hoping my first scan in April is good 🤞
Drink plenty of water , walk at least an hour daily a,Epsom salt baths and moisturise your skin well .
I’m sure you’ll be ok just keep a positive mind and sending lots of love and positive thoughts x
Hello Barbie and welcome to you too ! Glad that your first 4 cycles have gone ok (they were my most difficult ) and I hope you have a good scan in April . Keep positive ! x
Thank you so much , I’m hoping it’s working for me so I can continue on it and get back to being normal again !You take care and keep in touch xx
Welcome to the group. I have been on letrozole and ibrance for 12 rounds now and am feeling good and making constant improvement. I just keep positive and live as I've done for the last 26 since my first BC diagnosis, trying to make the most of every day. I've had no major side effects. I hope you have success and many healthy years to come. Carolynx
Hi Kim. I've been on the Ibrance/Letrozole/Zometa combo for widespread bone mets for 6 months now. Diagnosed mid 2020, ten years after my initial breast cancer diagnosis. Scans show no progression and some bone healing. Virtually no pain other than the usual aches one gets with age. Also virtually no side effects, just some fatigue now and then that can be managed, and hair thinning.
As others on here have commented, drink lots of water and try and get regular exercise. It take time to adjust to your new 'normal' - I'm only now realising that I've got many years of good quality life left in me. Take care.
Ruby, I’m glad this protocol is working well for you too and being well tolerated ... hope it continues for a very long time ! x
Welcome Kim. Glad you joined this group. You will find all kinds of support and information here. It is normal to be scared and worried but just know that there are many treatment options available. Ibrance didn't work for me but many find it works very well and very few side effects. Wishing you well and keep us posted as to how the Ibrance is working. And always ask for a second opinion if you want to be sure of everything.
Cheers, June S.
I have been on letrozole and ibrance and zometa for bone Mets for two years and so far everything is stable. I did have to drop to the lowest dose of ibrance to tolerate it. Hope all goes well for you. Theresa
Hi Kim. I was diagnosed April of 2019 with MBC in 80% of my bone marrow. I could tell by the look on my oncologist face she didn’t think I had long to live. My marker number started out at almost 1,600. It’s now at about 63. I’ve been on Ibrance and faslodex. Try to keep positive! ❤️ I have a healthy shake every day which I think has helped. Hang in there! ❤️🙏❤️🙏❤️🙏❤️🙏❤️
Wow that is a very hi number asn has dropped a lot... mine was only 250 and has slowly dropped to 74. Did you have any months where it wobbled and went slightly higher? And then went back to behaving? Did that make you anxious.
It went down pretty quickly. A couple of times it went up but then went down the next month. My oncologist said that’s normal. I didn’t worry about it because it didn’t continue going up. I think its harder for me not to get nervous with my number this low. I’m afraid it’s going to sky rocket. ❤️
Hi Kim and welcome.It is very scary to begin with, but you will find your way and it will all become quite normal.
I have been on Letrozole, Denosumab and Palboclilib for just under 2 years now and am working and carrying on as normal. I had to reduce down to 100 mg of Palbo when covid hit and have stayed on that dose.
Hot flushes are the worst side effect for me, but I am used t9 them and a fan in the bedroom helps!
Take care
Clare
BARBIE70• in reply to
Hi Bella I’m worried that my immune readings are constantly low when I have bloods before my next denousomab and 125 mg of ibrance .
I’m wondering if I should ask about reducing it slightly ?
Did you have the same problems xx
• in reply toBARBIE70
Hi yes my counts were hovering just over 1. My Nurse suggested I reduce to 100 mg because they were lowish and it would give me a better chance of fighting covid if I got it. Your Oncologist might well suggest lowering the dose, especially if you are feeling tired. I think it is a historical thing that the highest dose is used with medications as a matter of course. Download BestBirds book ‘The Insiders Guide to Metastatic Breast Cancer’ it’s full of useful information.Clare
BARBIE70• in reply to
Thanks Bella that’s really helpful ,I’ll download the book .Take carexx
Welcome, Kim. You are now a member of amazing women who will be there for you in good and bad times.I couldn't deal with mbc without them!
I wish you every success with your treatment. Ibrance has proven very effective and letrozole brought me to remission during my first go round with cancer!
Hi Kim. I’ve been on letrozole, Ibrance and xgeva for over 5 years after being diagnosed de novo in January 2016. As others have said, fatigue has been the biggest side effect but I’m still working full time. Every day is a blessing for me
Hello Kim. Welcome to the club. I was diagnosed with MBC in my bones in March 2017. I have been on Ibrance, letrozole and Xgeva injections since then. Everything remains stable. I have minor side effects, the most annoying for me is the dry eyes which causes them to water constantly. Hot flashes, thinning hair, and getting tired are just the new normal. Good luck and Stay positive.
Ibrance worked well for me for a year( often lasts much longer, but not for me! :(. )with minimal side effects....during that year I lived with my husband in Germany for 3 months, hiked for 5 days in Switzerland and a week in Portugal, and mostly felt pretty normal! One of the hardest parts was not being able to drink alchohol...and on the spectrum of problems, that’s pretty minimal! I hoper you have good results too.
Oh dear no one told me not to drink alcohol! Is that because of Ibrance or which other MED? Maybe I am not on it?
I was also on Letrozole, I think...but they did really discourage me from drinking....but double check. Now that I’m on Xeloda they say I can have a drink or two a week....
How’s Xeloda working for you? I just switched trying to get my liver under control.
I love Xeloda...I’ve been on it 4 months and everything has shrunk and my tumor markers have gone down. Some diarrhea (I take an Imodium every morning to prevent that) and often 60 to 90 minutes of very bearable queasiness (that I don’t notice if I’m busy) a day. Loss of fingertip and foot sensation, but also bearable....I hope I can stay on it a long time!
• in reply toBettybuckets
Oops me too.
Hi Kim! I was diagnosed de novo in July 2020. First oncologist (whom I have since left) started me on chemo even though we knew days before that I had suspected bone metastasis. I switched oncologists in early August, finished up the last of 4 AC chemo sessions, and started on Ibrance and Letrozole in late Sept. I have also been on Zometa for my bones since July 10th.
I was scared when I moved to hormonal treatment, as I knew nothing about it. As I learned about it (and MBC more broadly), I came to understand and be comfortable with this as the right treatment for me. It should have been first line all along. Anyway, like you, I was scared initially. I was on the capsule form of Ibrance during the first month, and I lost all the hair that was trying to come back after chemo, along with my eyebrows, etc. And, I did have a lot of joint pain (which, for me, was pronounced pain for what has been chronic pain for more than 20 years). When I switched to the tablet form of Ibrance in month two, the joint pain was less and my hair started coming back. It is almost long enough now for a pixie cut. Eyebrows came back too, but started to thin again last month. Looks like they are coming back now, so, this may end up being something I have to deal with longer-term. Started taking biotin for this.
I had my first scans since starting hormonal treatment on January 8th. There was no evidence of progression. And, I feel great. My next scans are April 2nd and 6th. Bloodwork is consistently good, with the exception of low white and red blood cell counts. I pushed my oncologist to test for things that may be affecting my counts, such as my iron and B12, etc. All those just came back as fine. That means, this is the meds. And I just have to live with it! I have needed to pause the restart of Ibrance (125) twice due to low neutrophils and platelets. Now we have started doing my blood work a little later after I finish my 21 days rather than immediately. So, typically about 5 days after my last Ibrance dose. My blood values are coming back within the safe range to continue on with Ibrance. So, no delays in my restart dates since we synced up my lab days a little better with my rebounding levels.
Here if you need support or have questions. This forum was one that I found just as I was about to start hormonal treatment. I've learned a lot, and I found a lot of hope here too!
Cos
xo
Hi Kim, 12 years after my initial 2001 diagnosis I had bone mets to hip and pelvic bones. My treatment from 2013 to 2020 was Exemestane/Zometa. 2017 had radiation to hip and T7. October 2020 found bone mets to sternum and T5 and had radiation. Oncologist added Ibrance along with Exemestane/Zometa. Dec 2020 there was no evidence of disease (NED). I will have a PET scan Mar 29 to see if Ibrance is still working. After 2013 diagnosis I had extreme anxiety. Doctors had a hard time finding the right antidepressant. Some made me feel like a zombie and others increased anxiety. Seroquel worked for me. I wish you the best. This is a great group for information.
Hi Kim, I was in your shoes 6 months about- but am 60. My former boss who works for the company that makes Ibrance discussed the data and side effects of Ibrance with me as I had left company. My understanding is that is works especially well for people without a lot of visceral disease. You are young so that will go in your favor and I hope that you will be like me and find the right dose- for me that was 100mg... this allowed me to not be exhausted with mouth sores all the time... and instead have almost zero side effects while getting th benefits of stable disease. Let’s stay in close touch.
Beth and toby
Hi Kim, I was diagnosed with de novo mbc in Feb this year and I am now on Arimidex and my second cycle of Ibrance. I was shocked by the diagnosis and very scared. I was in a lot of pain when I was diagnosed but after the first Ibrance cycle this subsided and I was able to return to walking, lap swimming and lightweight resistance training. My main side effects is fatigue but that’s also decreased after the first two weeks. I have found great comfort and support from the messages I received when I first introduced myself to the group. You can ask questions about anything and someone will answer. Please feel free to PM as well if you want to chat. We definitely have strength in numbers here!
I was on Ibrance from January 2017 til June 2020. Only issue was mouth sores. Was only in bones until then. Since June it has moved to my liver. Still trying to figure how to control the liver mets. Now on xeloda hopefully working.
Hello, Kim,Your story is mine three years ago. In November 2017, I was diagnosed with extensive bone mets to spine and iliac. I was prescribed Letrozole and Ibrance through August 2020. (Also an injection of Xgeva every three months.) At that point, I had mild progression and was switched to monthly Faslodex injections, while continuing the Xgeva.
I am doing well and you will, too. The worst period of time is the first six months while you are wrapping your head around the diagnosis and your new treatment regimen (ie monthly blood draws and occasional CT scans.) I experienced a lot of lethargy and aches, but those subsided over time. Your hair will thin a bit, so daily doses of biotin help a lot.
Over time, you come to trust that this is not a death sentence but a managed disease with many treatment options over a long period of time. God bless you, Kim. You will find a lot of comfort and knowledge from many of the women who post and respond here.
XXOO
Linda
Linda you are the best
Thank you, Allison! So are you! I love reading your posts! XXOO Linda
Hey Seattle Mom, I love on nz but am coming to Gig harbor to visit my friend Linda for 3 weeks in early April.. any chance we. An meet up while I am around?
That would be wonderful! I drive over to Bremerton occasionally to visit my parents’ gravesite and could easily swing down to Gig Harbor on the way. They have some great little restaurants there. We could maybe meet for coffee? Thanks for reaching out!Linda
💗💗
Hi Linda- I arrive April 3 snd stay 3 weeks. I would love to get coffee... if I haven’t managed to find vaccine, we can sit out side in spring sunshine snd socially distance... I have to get used to that as in nz we don’t have Covid.
I was diagnosed with breast cancer on March 1, 2004, and by the end of that month, learned that I had "extensive" bone mets. I am still here 17 years later and without symptoms directly linked to the blasted cancer. I am tired and my short term memory isn't what it used to be! I started treatment with Letrozole and got nearly five years from it. I was also on Zometa for the bone mets--it helps strengthen the bones and helps the mets heal. I switched from Zometa to Xgeva as soon as Xgeva became FDA approved as I was allergic to the Zometa and needed alot of extras to handle it. Then I got over 9 years from Faslodex, and now have been on Exemestane for over 3 years. I've had recent progression but nothing showing up in any organs besides the bones and still no symptoms in my bones. You would never guess that I have an advanced cancer if you saw me out and about. I see a bc specialist occasionally for a second opinion and am currently working with him and my local onc to pick among a few options. Surprisingly the thing I have gotten most upset about in my long time with this cancer was the retirement of my first and long time onc, a very wise woman who was on the same wavelength as I am, I really trusted her alot. Some of us do very well with bone mets and an E+ cancer which you must have. For me the first year or so was the hardest emotionally! It really does get easier. I hope you will do as well as I have!
OK, I have to ask... Over the entire 17 years did you not have any further progression, or did you have times of stability, times where it flared etc.? Did you change medications each time there were new areas of mets, or did you stay the course? Just curious...
Thanks. You are indeed amazing!
I'm happy to answer those questions, the best I can. I have indeed been "stable" for most of the time I've had this lousy cancer. We've (my onc and I) not rushed to change meds when there have been early signs of a bit of progression. I've not had pain in my bones. I have preexisting spinal stenosis (narrowing of the openings the spinal cord is in) and have neuropathy from that. I've had spinal surgery twice for the stenosis and the bone mets have made the surgery alot more complicated and time consuming but the surgery seems to have not done anything to the mets. Weird, huh!? My original onc and the genetics counselor she sent me to both agree with me that my family seems to have some genetic something that helps us live with cancer, something that doesn't prevent cancer but does keep cancer from doing its worst to us. (I wish I could clone that and share it with everybody that has cancer! ) I know that I am really really lucky to still be here. I think having an experienced onc who didn't rush to change meds at the smallest sign of progression helped. I've also learned to keep anxiety from influencing decisions and have done well in the not worrying department. I don't believe that has added to my longevity but it's sure helped quality of life! I'm going to post about the most recent decision I need to make.
You are amazing!!!
Take one day at a time and have trust in your medication. I’ve been on the same meds for over two years now. I have a CT scan every 3 months and blood test and treatment every month. I have a week of Ibrance every month. There’s good days and bad days. You just have to go with what your body tells you. Rest when you want to and don’t be frightened to have a cry or a shout when you feel down. It’s hard to say think positive at this early stage but we have all gone through these apprehensive feelings. Keep posting on here and you will find out how wonderful everyone is and how we all share going down the same road. Best wishes.
Rbeth• in reply to
Wow. What wonderful advice. Better than the the doctors. I was Taking Ibrance and Foslodex for 1 1/2 years. Then it stopped working. I had Mets in my spine and ribs and they turned to scar tissue. Gone!
I have mbc in the lining of my stomach and rectum. I have been on Xeloda for a year. I am now on one week on and two weeks off. I just took five weeks off and felt better. My cancer numbers after being off only went up 12 points. 121 to 134.
Drink a lot. I found coconut water is great to keep you from dehydration. Costco has organic not from concentrate. It comes in boxes of nine containers for about $15.00.
Rest when you need to.
Everyone is different, but we all support each other. Thanks everyone for sharing. Reenie
HI Kim
So sorry for the delay in responding to you post My tablet has been acting up for at least 3 weeks. I try to respond to others but nothing will post. I'm sorry you have had to join us but the ladies here are compassionate and caring.
I got bc in 2009 completed treatment 2015 bc again other side. This one spread to the bones only and still today I have no organ involvement . I'm finishing up my 10th year I wish you well and good luck
Stay safe
Regards Shelby
hello Kim and welcome. so sorry for your reason for being here though. I am a 64-year-old woman in Australia who was diagnosed with bone Mets to spine, ribs, skull and hips, nearly 3 years ago.
I was put on vibrance 125 mg and letrozole with Denocumab injections monthly as soon as I was diagnosed.
after realising my neutrophils were too low at the end of each cycle my doctor finally drop me down to 100 mg Ibrance a few months later, and I’ve been on that ever since. with one slight change last year when I started to get carpal tunnel syndrome in my both of my thumbs my oncologist then put me onto anastrozole instead of letrozole.
Apart from feeling tired often and apart from being old and having some aches and pains with the Mets are, as well as where they are not, and it’s probably more to do with not having great genes, for me, I am doing so well.
I often forget I've got cancer.
While I welcome you to the site, I am sorry you have to be here. I too have bone mets with no spread to organs. Was diagnosed in October 2019. Tried Xeloda. That did not do much. Then we were able to get a good biopsy that put us on the road to Ibrance and Fulvestrant with quarterly shots of Xgeva. I started the protocol in February 2020 and have been stable since then. I have tolerated IBRANCE really well. I initially had some nausea but that subsided. I'm not as peppy as I used to be. Worst side effect has been hair thinning but I think that is the Fulvestrant. I know this diagnosis is terrifying but as you get to know the ladies on this site, you will be given hope for the futurE. Amazing group of warrior women. Good luck...don't be afraid to ask anything of us all.
I have been being treated for metastatic breast cancer to the bones also never in the breast it will be 8 years on July 3 diagnosed but took me 2 years to get diagnosed been on many different treatments stay positive when one treatment stops working there are plenty more to go on. This sight is fantastic and you can find great comfort in talking to people on here for advice. Welcome to a Great group that no one really wants to need to join
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