To introduce myself. I’m 50 years old and only got diagnosed in May this year. Having my overdue mammogram, I went from zero to being told I have stage four metastatic breast cancer that has spread to my ribs, breast bone, shoulder blades, spine, skull and pelvis.
The good news is that it’s just in my bones and the original left breast site. Being a hormone positive type and as I was premenopausal, I’m taking Femara and Zoladex . Also Zometa once a month to help with bone strength. I’ve just started Ibrance a few days ago.
I was previously taking an alternative targeted therapy medication (Kisqali), but that made my liver enzymes rise to 10x above normal. Having brought them back down my oncologist thinks I might be ok with Ibrance.
I was wondering if anybody has experienced liver issues with Ibrance?
I’ve learnt from my previous experience to drink loads of water. I’ve got my weight down by 20 kilos over 5 months and I eat healthily and exercise regularly.
I’m also hyper mobile (double jointed). I’ve found Pilates is really good for me as it’s relaxing and strengthening while not putting too much strain on my joints. A lot of other exercises are to hard, such as running, cycling and aerobics.
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Hi! I was diagnosed with de novo mbc in February 2021. I was going along without a care in the world, swimming, weight-lifting and hiking and within 6 weeks I was in so much pain that I could barely get off the couch. I was diagnosed with extensive bone mets in my spine, pelvis, sternum, scapular, skull and ribs. There was so sign of the primary tumor on my mammogram the previous year and it was difficult to locate on examination when everyone knew where it was based on imaging! So you can still be in this situation if you have had all your mammograms 😏
I have been on Ibrance, Arimidex and Zometa for 9 months. I built up to walking 3-4 miles a day as well as returned to swimming (slowly) and lightweight resistance training. I’m a big advocate for exercise. Nine months into my treatment I am back to swimming 1,500m and weight-lifting twice a week and I've also taken up Tai Chi!
I'm adjusting to my "new normal" and living my life the best that I can given that I have to cope with this disease that robs you of so much. . I find the information from the ladies in this group extremely useful and comforting. It was also great to hear the stories and experience from those who were in treatment for many years. Stay strong!
Thanks for getting back to me.Sorry that you are also in a similar situation.
I know what you mean about “new normal.”
Initially you wonder how you will ever function again…but very quickly we learn to adapt and get on with our lives.
I had some rib pain the previous winter before my diagnoses. The tests that I had then (ultra sound scans and x-rays) all came back negative….but no one was looking for cancer, we all thought it must of been an intercostal muscle injury.
Yes, your right , it is great to hear stories from people who continue to stay strong and hopeful after years of treatments. This gives us all encouragement and support to believe we can do likewise.
Thank you for your response.Tai chi sounds like a good idea too. I’ll give it a go and will find some online tutorials. It also will be good that it doesn’t require any special gear and I can even do it at home. I think it can be very grounding and relaxing too.
Wow really impressive water drinking!I thought I was doing well with 3 litres a day.
I know this is a crappy club to become a member of…no offence to you! But you all sound like a great bunch of positive and supportive people. I had been reluctant to reach out when my oncologist mentioned that she could put me in touch with other patients at the centre. That’s because of the drama and negativity that I have often seen around me during my appointments. May be it’s the Mediterranean temperament?
Coming from a very mixed nationality background I’ve never really fitted people’s expectations. Living on a small island people usually think I’m a visiting tourist.
My Greek language skills are awful as I grew up only speaking English….so this platform seems like a good fit!
For many, Ibrance is very tolerable. I felt tired on 125 mg and was reduced to 75 mg and that's worked well (with Faslodex and Xgeva) since March, 2018. I'm on the Xgeva only every third month now. Ibrance isn't great for your hair but it's great for longevity! I'm impressed with everyone's water drinking--I drink when thirsty. I go to the gym every other day and I often have a glass of wine with dinner
My oncologist has started me on the highest dose….she did the same with the Kisqali too. So we then have some wiggle space to later reduce the dosage if need be.Glad your staying active. If you don’t mind me asking …how bad was your hair loss with Ibrance?
I already have had a lot of thinning that I put down to being mostly from the hormone therapy.
I’ve just had my hair lobbed off to shoulder length to make it seem a bit thicker…but I still lose a hairbrush full every time I comb it.
I hope I last longer on the Ibrance than the 3 months of Kisqali….cheers to longevity!
I think the main effect with the Ibrance has been: (1) Dry-as-dust split-endy and (2) won't grow. But my hair is there!
With the initial treatments--back in 2016 I had chemo (the works--epirubicin, cycophosphamide, which I've probably just misspelled, taxol.) With the first two I lost all my hair right on schedule (my German doctor said I'd lose it "after 17 days" and lo! Brushed my hair on the 17th day and handfuls fell out. )
I'd been about to cancel the wig order and was glad I hadn't. Went there and let them shave the rest because it was falling into food I was cooking. Bristles grew back, then the full Brillo Queen look (Think Phyllis Diller if you're old enough to remember her . . . ) It's still a kinky frizzball; I still use hair oil (Trying Khadi brand rose oil now and have used L'Oreal's Magic Oil.)
Mainly: it's fairly full now, but frizzy and just doesn't grow long. Being past menopause may have something to do with that, but I'm reasonably sure that if I quit Ibrance my hair would look much nicer. But since I'd probably die a few months after that I'm not going to try quitting Ibrance.
You might want to get a genomics test. They are expensive--I crowdfunded for mine, which here in Germany seems to have embarrassed my insurance into paying anyway, so now I have a "desperation oncology" fund. The tests cost around 5,000 euro and mine showed me which of my wonky cancer genes are treatable and which not. I discovered, for instance, that the Letrozol I was on did nothing for me. I have info in case I want a clinical trial in a few years. Do one's genomics change? The Zillion dollar question, but now I know what my profile was in 2018.
I am given CT or skeletal scans every six months--it is a good idea to get those.
I’ve had a weird sort of chalky chemical coating on my hair whilst on Kisqali. Thanks for explaining your hair story.
I think I’ve had the test you mentioned. After my initial biopsy I had pieces tested for tumour markers and then some pieces were sent to Germany to be tested on a molecular level to check which treatments were viable for me.
Luckily I could get this all done within the NHS funded clinic I go to.
Scan wise, I had the works done initially …but am now waiting to get settled on some course of meds before having them all redone.
The other thing--Keep track of ErSo, that drug that should (we all hope) go into clinical trials. Another one that looks like a miracle, though at the moment it only eradicates human (I believe) breast tumors in mice.
Did you know that if we feel thirsty we are already dehydrated? It's fabulous you are doing so well and so long on Ibrance but you would be even better drinking more water regularly. (In fact it would help your hair too probably.) I was just telling a friend today that I have a little trick now to help me keep up my quantity of water, I'll often make myself down a full glass of water before eating my lunch. Or drink warm water with a little lemon before eating breakfast.
Hi there. I'm the odd one out in this bunch, Im a man! I'm here for my wife who was diagnosed with MBC with Mets to lung and Brain. She's only 39 and we have two small kids, she's triple negative so we really are in a fight. I find this forum and Sandra's knowledge and links absolutely priceless! I'm constantly reading papers and links shared on this forum and using the info. Sorry you are here, you are very welcome and with friends who support here. Good luck with your own journey, know you are not alone. Xxx ❤️ Leo (and Susie)
Welcome Discocat to the forum nobody really wants to become a member of ! But you’ve certainly come to the right place for help & support. Over the last three & a half years since my MBC diagnosis of widespread mets to bone, lung & liver, this is definitely the place where I have learnt so much & feel really supported.
I was stable on ibrance for two years. Unfortunately, I’m now faced with the challenge of controlling my liver mets … I’m now on my 6th line of treatment which is IV Eribulin & I’m tolerating it fairly well. Just hope it’s doing the trick!
Stay hopeful!!! I am facing the same with my liver. She is giving me issues by now falling in line and healing like the bones. I am starting to talk to myself lol. "Time to start heal", "love ya but sick cancer cells have to go". "Come on immune cells start kicking those cancer cells asses". Will see if that works in the next 2 mths LOL.
Ibrance doesnt affect your liver,well not mine ...to me was perfect for one year
Hi Disco cat - I’d like to see you on a dance floor!Sorry you are hear but welcome. I was diagnosed when I was 50 too. I am now 53 and on Ibrance, Zoladex (3 monthly) and the bone strengthener. I didn’t lose any hair, but it went wild, dry and curly so I’ve had it all cut to about 1.5 inch all over.
You sound like you are doing very well and coping. I am sure your climate helps too.
It’s good to talk to like minded strong women who are all ,unfortunately, in similar crappy circumstances.
Haven’t been on a dance floor in decades, I’m sorry to say.
My kitchen has to do…and usually is the case…I turn up radio 2 and pull some questionable ,but enjoyable, moves most days. Being a 70s child, Disco always gets me grooving!
We know our age when we crank up Radio 2.We used to go to discos in the school holidays. My friend and I used to work out dance routines. Good memories, thanks for making me reminisce.
Hey, those were the days!After being born in London UK my family moved to Cyprus in 1984. So my teenage memories are of 80s music in the tiny local discos of Limassol.
Remember those bad perms that everyone had....we would be well trendy now with our fried cancer hair!!
Hi Zoe; You have found the right place for info and support. We all love it here. You souhd on the right track of taking care of yourself and staying grounded. Cancer can be a bit of a roller coaster ride but quite doable. I was diagnosed late in life and am one of the oldies on this forum. I was diagnosed in 2013 and have been through most of the meds available. I am on Verzenio with Tomoxifen. I have bone and lung mets. What has gotten me through is if I don't like what the oncologist is saying, I go for a second opinion. I fortunately have a super good oncologist for that. I also learned early on that there are three good sources of info. John Hopkins, Mayo, and your national Cancer group. If it is happening they know about it. Also, we are blessed to have Sandra on this forum. She is a nurse and very knowledgeable. Sounds like you are in touch with Germany and I believe they are a good source also.
Good morning from Nova Scotia Canada 😁. I am fairly new to this game diagnosed March 30th MBC,, no chemo. 2 small back lesions and my liver. I am on Letrozole and Ibrance I am currently in my 5th cycle. My bones are healing but my liver has had tumour growth, same spot. I have to say I was down about it and up to now always positive. But I do have to say with this disease it's a roller coaster ride and have to roll with the ups and downs with treatment. I have a great onocologyst and with my current situation wants to just wait a couple of mths to see if she wants to change meds. I don't want to switch meds because I really don't have issues with these two. She does want to start bone strengthener. I believe I have to go to the hospital to have that one ? I know since my diagnosis I have completely switched the foods I eat, added omega3, vitamin De and C. I exercise everyday. I will be adding acupuncture as well. The biggest thing is attitude and you have a great one. I believe there will be a cure for MBC ❤
Almost the first thing my oncologist said to me was “ I can not cure your cancer” to which you think “#@*#!!!”
But we pick ourselves up, dust over selves down and start over again!
I’ve currently been cautioned not to take any extra meds, supplements or vitamins….can’t even have paracetamol…
As my liver has become sensitive and we don’t want to overload it. I would recommend the bone strengthener.
There are a few different options available. I take Zometa as an IV at the oncology clinic. The first time it was administered slower and took 30mins…but now it is 15.
Each time I go there’s a process of being weighed so that the correct concentration of medication can be mixed up, having blood pressure checked too and then being given the solution intravenously. The whole thing takes about 1hr, including waiting time. It definitely helps with the bone aches. I have been off it a few months and felt my ribs playing up again.
I am familiar with #%$ LOL. Funny thing about the liver. It can heal itself, just not cancer. My liver is quite healthy considering. Enzymes are reading very well just that little narly cell. It's just ticks me off it's growing. I know there are other things like radiation for the liver to keep it small. I have to over the thing that I don't like hospitals, that's where sick people go..ohhh wait..that's me 🤦♀️.
Does the bone strengther have side effects attached? I can't remember what medication, but she did say it is intervenis and it takes an hour. It's preventative as my bones leisions are healing a bit..all a bit at a time. But I am all about doing everything we can to stay strong and healthy. I am still hoping I will wake up and this would all be a bad dream.
Live long and prosper...I think Spock had the right idea there 🖖
The Zometa has had very little side effects for me. I read the possible ones could be flu like aches and temperature for a few days after the IV and that some people also had diarrhea. I was a bit cautious and stayed home the next day after my first infusion. I never had any flu symptoms but almost exactly 24 hrs after the first IV, I was rushing to the loo and spent most of the afternoon there!That only happen once with the initial dose. I’ve had it 4 more times with no side effects at all.
I know hospitals can be scary…especially in recent and still current pandemic times. It’s hardly a spa day or a candy store but if going there is gonna make you feel better than it’s better than either!
It's all fear based and one has to go through that. Take the good with the bad. This is a bit of a down day with hearing my liver grew. But one has to muster the troops, shake it off and keep moving 😁.
Hey Deb. Nova Scotia here aswell! On here as my wife was recently Diagnosed with MBC. We have 2 small Children. It be nice if we could chat more. Take care!
HiI hope your wife and family are well. MBC is a long process. Best thing is stay very positive. You have work at not getting upset with the downs, because the ups are there as well. I think the best lesson I learned is to just do the best you can. I meditate and know that helps me. Walk as much as I can, nature has a way of soothing the mind. I focus on my health, my family and my job. They keep my mind in the present and not all over the place. If you wife needs to chat feel free to reach out.
Hi and welcomeI was diagnosed Nov 2020. Went on Ibrance and fulvestrant and Xgeva monthly from Dec 2020. I’ve been great on all. After a year lost 21 lb with a healthier lifestyle,only eat organic and just don’t fancy wine anymore tbh.
Scans after 6 months showed a small reduction in tumours so next scan Feb 22. I will be sad when Ibrance stops working as I feel great and love working, but my oncologist said don’t worry plenty more things to try. I’m in UK. Have MBC to sacrum, rib, pleura.
Had breast cancer at 49 and returned at 55 then MBC at 57.
Becomes part of life doesn’t it, but as long as I’m alive and enjoying my life it can play second fiddle in my life as far as I’m concerned.
I drink loads of water, never did before but love water now. I also eat lots of nuts which really boost my energy levels. I’ve found from this forum a fountain of knowledge especially from Sandra, really comforting and supportive ladies who you can turn too in times of need. Just sharing something is enough sometimes.
I was recently concerned when I had to change my treatment to start a secondary one only 4 months in from my original diagnosis…but my Dr was reassuring too and said not to worry as she can think of at least 17 other meds for me to try and that there are others that will be available soon. She is a strong believer in the development of new treatments and has mentioned to me how she is treating other women who started out decades ago when none of the current medications I am now taking were available…. And how they went through dozens of various medications and treatments to now be on the same meds that I am starting out on. So it has helped me to see the bigger picture and to appreciate that new treatments are constantly in development and to stay optimistic.
I am hoping Ibrance will be a good match for me for a while at least as I’d like to settle into a bit more of a routine and get some more scans done.
Three days in so far, no side effects and I have normal energy levels. I went for a 2 hr walk today. The weather has changed and it has been raining here which has freshened the air up and made it feel more seasonal.
Good on you for looking after yourself so well! Great weight lose too!
So good to have you here. Welcome! It sounds like you are taking good care of yourself. Everyone is different, but I have found Ibrance to be easily tolerated. Just have issues with bloodwork and I'm on 100mg tablets with 3 weeks on...2 weeks off.
I wish you all the best on your treatment! Keep posting!
Hi and welcome Disco at. I'm much the same as you. Diagnosis out of the blue. 2 tumors in breast. One on clavicle. 4 in armpit. I'm now on furastatant as letrozole stopped working.. Mets in various bones and left lung active. However I feel OK at the moment and so live in the Now. You spoke about your mixed nationality and we are all nationalities here. My family is white British. Jamaican. Polish. And Chinese. We all love each other and that's how it should be. Lovely to meet you. Please keep in touch. All the best. ❤
Thanks for the welcome Aprilrose,My father is Greek (from Cyprus) and my Mums a mix of Dutch, German, Czechoslovakian and Arabic. They both moved to the Uk and I was born there and we stayed there until I was 13. We then moved to Cyprus.
I was never taught to speak Greek, so I had to go to an English school.
Over the years it has become much more cosmopolitan here as more and more nationalities have settled and made Cyprus their home, but back when we arrived it was very much a case of either being local or being considered a foreign tourist. There was even a different pricing scheme where “foreigners” were charged extra for almost everything….unless you spoke Greek and could bargain things down.
Hi Discocat, love your “name”. I’m very sorry to hear you got your diagnosis. And such a shock I’m sure. I think you should be fine on iBrance, it helped me for nearly 3 years and I’ve had issues with liver enzymes on past standard chemos but the iBrance was fine. I DO drink lots of water with these drugs though! If I don’t I get migraine and nausea very easily so keep drinking. I use key times to remind myself Eg. to chug an extra glass before I start eating, or before that cup of coffee, as well as always on my desk. I’m amazed how you lost so much weight so fast, that’s impressive! You have another Pilates lover here! It’s amazing. (But with spinal mets do be cautious about no legs overhead, or forward flexing when you’re lying on your back). Wishing you the best moving forward
HiThanks for the welcome and the warning about not to over extending in Pilates. I have a great instructor who I’ve been going to for years before my diagnosis. I’ve explained the cancer situation to her and she’s created an adapted programme, with my limitations in mind.
Losing the weight was not easy. I really almost starved myself. I made sure to eat lots of fresh greens and veg in general with some fruit and a bit of dairy….but in the beginning I was having less than 700 calories a
day.
The water helps to fill you up a bit. I’m now eating more… but making sure to be portion controlling . I still want to lose another 10 kilos….but I will do that more slowly now.
I had to get my weight down fast as my oncologist thought that would help my liver function.
When my enzymes spiked she took me off all meds…even the hormones…so in order to get back on the therapies I took a drastic diet approach. I don’t recommend that anyone tries such a restricted intake without first checking with their oncologist …mine literally told me “eat little, drink loads”
That's great you have a professional working with you for Pilates, its too easy to not do it right otherwise! And congrats on having the will to achieve your weight loss like that. Hard work, especially when most of us love eating You seem to have done it mindfully, if drastically, just don't get too carried away now
Welcome! Your story is similar to mine--diagnosed in my 50's, with "extensive" bone mets from the beginning. That was in 2004, and I'm still here. I got almost five years from Femara and am on just third line treatment now, with bone mets only until about a year ago. Some of us do really well for long periods of time, and there are more treatment options now than there were then. I hope you will do well, too!
Welcome. This is a very supportive group.
I am able to ride on my e bike when the weather is good. I am 28 miles of 3000 miles in 3 seasons - but -- the cold weather has kicked in here in MA. Unless there is a surprise warm spell, I will wait until spring to make the magic number.
Other coping tools I use (1) free guided meditation apps on Alexa. They are 5-7 minutes long. They remind me to breathe properly. That helps me relax a bit. (2) I have telemedicine calls with a counselor so I can vent without unloading on my family. We speak about every 4-6 weeks, even if I am feeling ok. I think of it like regularly changing the oil in my car. (3) I am trying to be more consistent in taking a rest break for 20-30 minutes at least 4 days a week. By nature I've always been active. I realize I can't maintain that pace any more. Fortunately I am retired now so I don't have to worry about falling asleep at my desk. (4) I take an occasional Xanax when the anxiety spikes especially around scan times.
Welcome to this caring and helpful support group. It really helps me by making the MBC journey less scary and isolating. I was diagnosed with widespread extensive bone mets in 2005. BTW- I just love your screen name!
I’m really finding this group to be a wealth of support and connection.
I’m sorry that you’ve got a similar mess of bone Mets like me…but the fact that you’ve had the strength and perseverance to be here, also helping to support others, after all this time makes you an inspiration to someone newly diagnosed as I am.
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You seem to have done it mindfully, if drastically, just don't get too carried away now 
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