Hi, I’m new on here, I was diagnosed in A&E after a fall (I’m only 42) at the beginning of November. Cranium, spine, pelvis and femurs also lung and liver. I was in hospital on a lot of morphine for 3 weeks, then radiotherapy, then I was pretty much asleep for 6 weeks. I became very thin and week. In January I had pins put in both femurs. Two separate operations so I had a lot of anaesthetic. When I left hospital 3 weeks ago after a 2 week stay the reality hit and I had what can only be described as some sort of mental reaction to the ‘post op blues’ which made me completely loose it. Feeling suicidal, shaking, panic attacks. I am pretty much house bound but I’m almost able to walk with out crutches inside. Still can’t do much for myself. Poor husband is looking after me and our two small children. I can’t think of anything but how ill I feel and I’m so worried I’ll never be a proper mummy again. My body is improving all the time on the Ibrance combination, the doctors are positive, but my mind has fallen apart. Forgot to say I’ve been in a neck brace all this time as they are worried about a pathological fracture in my neck, hoping this will heal with Ibrance.
Can I get over this and be normal again? And does anyone know how long it will take me to recover from 3 months in bed?
Any support gratefully received x
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I thought the pathological fracture I had was bad enough and I live on painkillers
Was diagnosed April and have managed to ride my horse again since July so don’t give up you will improve with the medication..are you on letrazole as well?
This site is a lifesaver for me..there are some wise women on here who have been through different treatments and can give you advice
I’ve had to resort to antidepressants recently as was trying to cope but realised I needed help..just started so we’ll see
Thank you. Yes I keep forgetting it was major surgery! Just want to be normal so much x
Hi,
You have been through so much since your diagnosis. It is no wonder you are feeling so low at the moment. Has your medical team told you how long it will be until you are likely to see an improvement? At least if you know what to expect with that then you can have something to look forward to. I hope that you have some strong painkillers that will help you manage the pain. Don't try to go it alone if you are in pain. I tried that when I had a bad reaction to radiotherapy last year and it didn't work, so if you are not able to manage the pain I would talk to your oncologist and see what can be done to help you.
I'm sure your husband loves you and wants to do what he can to help. I think we sometimes trick ourselves into thinking that we are being a burden, but think of it this way: if the roles were reversed wouldn't you do the same for him? If you feel that he is struggling, can you call on friends or family to help with some babysitting, collecting prescriptions or shopping? Or maybe see if they can drop round meals that you can freeze for later on so that your husband does not have to cook.
If you are able to, I would recommend nice relaxing baths. I sprinkle Epsom salts into the bath and some essential oils, and then just lay back and unwind. I feel so good afterwards.
In response to your question about feeling "normal" again, I would say that life changes once you receive a diagnosis of metastatic breast cancer. It will never be the same again, but that does not mean to say that you cannot still enjoy your life. But before you can do that, you need to heal from your surgeries and pain.
Please continue to reach out to us on this site, your GP, oncologist, husband, friends and other relatives. There are so many resources where you can ask for, and receive, support.
Thank you so much for such a long reply. Yes you are right, I’m being impatient on the recovery time. I don’t think anyone gave a time frame as I’m so weak. I was running 10k races only a few months before this all happened so I was really lean. My muscles have just dissolved and I look like a skeleton. So hard to get my strength back x
I lost a lot of weight after my diagnosis and was frail..I wasn’t fit like you but was riding/competing and driving a 7.5 ton horsebox... now I probably would struggle to lift the ramp!!
It’s very heartbreaking to not be the ‘you’ you once were but you will gradually improve to a new level as I’ve had to do..it’s bloody awful though and I totally understand how you feel
I regularly have angry crying episodes..usually when I’m by myself then I try and get a grip but that’s not always possible
You may go through phases of negative then positive feelings..all normal
You're welcome. I wouldn't say you are being impatient. When you are in pain and feeling weak it is only natural to want to move things along and to want to feel normal again. I self referred for some physiotherapy last year and that helped me feel stronger. You can get it for free on the NHS, so you don't have to worry about going private. Perhaps you can do the same thing when you are feeling up to it. As you have lost so much weight you might also want to talk to your GP about that to see what you can do to help put some weight back on. I had a Macmillan cancer cookbook that I gave to a friend whose friend is in a very bad way. There are some great tips in there about recipes if you are too tired to cook a complicated meal, if you want to gain weight, lose weight, or you have trouble swallowing. I would stop by your local Macmillan centre and pick up a copy. I have even seen some in my local library. x
You can get thru this, your “normal” has changed and you will always be a proper Mum because it’s you your children need and love. I am so sorry that you are dealing with so much at once. When I was diagnosed, I was just like you. Suicidal, shaking, anxious. I actually wanted to lose my mind, but just couldn’t manage to cross that line. You can scroll thru my posts and see how hard this journey was and is. I’m older and my son is raised, so I feel for you being younger with a young family. Please see a therapist and get help putting yourself back together emotionally. A lot of us are on antidepressants. This thing is more than you can handle alone. Pain control is essential. Until you are more comfortable, everything else will be disproportionately worse. There is hope. Lots of different drugs and new ones being discovered all the time. My goal is too live long enough for the next great drug to work if and when Ibrance and Faslodex stop working for me. It does get easier, but never easy. You will find the things and people that support you. I lived my early days in constant mourning for myself and waiting to die . After a while I realized I wasn’t going to die any time soon. This was not how I wanted to go thru life. I hope you like your oncologist. That’s so important. Everything you are feeling is normal. Please post back and let us know how you are. Please feel free to vent. We all need to, and the women here live what you are going thru. ❤️
Sat on the couch wrapped in a blanket (it was Juiy) and shook for a few weeks. Maybe close to a month. My sister in law came to stay with me and sat with me. She didn’t say much, but just being present meant so much to me. I had been in therapy, but stepped it up and went on antidepressants, which kept me from sinking.
Sounds terrible, great to hear that is in the past, finding this forum has been great for me. I thought I was loosing it! Yes I need to find a therapist. I’m a bit scared of antidepressants and reluctant to add more drugs to my concoction but if I can’t get out of this then maybe it’s a good idea? Are you still on them? X
Yes. I am a nurse and I don’t like being on too many meds either, but have made up my mind that antidepressants are something I need for the rest of my life. I am on a very low dose of Elavil and feel no side effects. There are so many types out there, it may take a few tries to find one that is a good fit for you. I don’t see any downside to trying it at least. A good therapist is at least as important imho, and you can vent and cry without worrying about overloading your loved ones.
Hi; I fought of the need for antidepressant Zoloft—my primary doctor recommended it as it truly helps with anxiety and for me that fed into my depression as anxiety can feel like ur losing it and cause despair and suicidal thoughts as can depression. If your home bound a physiatrist May send PT (Physical Therapist) & OT (Occupational therapist) to your home—you could then ask for s psych nurse who could give you talk therapy and or recommend an “on-line” therapist which I’m told insurance WILL pay for as I think we all try to be strong and those around us want to GIX is—but they can’t so I think I try to lessen that frustration on my family by being fixed and it does add to my anxiety because IM SO BROKEN—but I must say once I tried the Zoloft my anxiety stopped for the most part (my scans are tomm and I have “severe Scan-Xiety this time—I think cuz I’m getting up into my 16th cycle starting today.
Last ? Does anyone know why doc would only run one of the two Cancer markets? Thx sorry to ramble!
I hope you feel better and can’t imagine what your going thru—remember MAJOR surgery cannot he recovered from overnite and realistically just take it slowww cuz the meds do help but are not without their muscular achy & extreme fatigue (for me both are intermittent); I have good days not so good days and sometimes even great days (for me it’s during week one—then the cycle repeats. I’m so glad I just volunteer and I’m retired/disabled. Careful of being afraid of the STIGNA on mental health issues; they are real. Bi also take Ativan before flying and for my scans and one with Ambien at bedtime to help me fall asleep; once I shut my brain off I sleep solid n soundly. Drink plenty of water—like 2 2-liters a day; wen ur able take baby steps; sit outside 10 mins a day you need sunshine n fresh air; then walk up driveway and around house for 15 mins a day; gradually stop counting and change it up tru a short hike ur walk beach. Try to start reading/audiotapes work too! Knitting may help too—I get hyper focused on NETS” &death sometimes and that’s hard to take in that we may stay in Ibrance/Letrozie indefinitely until better one comes out—I am definitely positive there’ll be a cure—but it’s The Who knows wen that is all too much to handle for me!
You all take care.
Prayers and fingers crossed my son graduates high school in10 weeks; it’ll be nice to see that (if he does his work n stops messing with pot!). No motivation teen + pot=disaster. He’s got seniority’s too and won’t even believe there is a lite at the end of the tunnel! Capt Diem everyone. I’ve too all
Oh my dear, I know what you are going through, after seven years of survival from bc I thought I am done with cancer! I am much older than you are however when last November after being in severe neck pain for 4 months finally they diagnosed me with bone cancer, I said to my self I don’t want to go through agony of this none sense agian and decided to end my life but then thinking of my grand daughter and how she will have to carry this for life made me to go through this new normal again! You will get through this I promise you, think of your children and you nice husband, a lot of people go through this without someone. I still wearing corral, I know how hard it is. Today I met with my onc and he told me it is shirinking. may be I need to we’re it for 2 more months and I can take it off, that means treatment (IBRANCE faslodex and xgeva is working) ! I hope in near future you will hear good news and since you are younger your recovery would be much faster.
Poor us, are you still in the Miami collar or have you changed to a soft one? I’ve been in mine since 1st nov. The first week was spent lying flat in a trauma ward on loads of morphine. They’ve just changed me to a soft one as I said it was making me depressed, It made me feel out of touch with my body and I couldn’t hug properly. I have an X Ray in 4 weeks. Really hoping they say it can come off. It’s so stressful isn’t it worrying that the bone could collapse? I think we’re both probably past the worst. I almost can’t imagine being able to drive again or pick things up of the floor. Really hope yours comes off soon X
Yes, it is really uncomfortable! mine is aspen vista and doc told me I have to wear it all the time except when I am taking showers! Sleeping and basically as you know everything else is very cumbersome! I am going to have ct scan on March 21 and depending the result I guess he will decide what to do? I pray for you and hope your X-ray result is good and you can get read of it soon. But as you know life is a challenge! I promise there is a light at the end of the tunnel for us!
You have had such a rough time. It's very early days yet and you are still in the state of shock we have all experienced to some extent on diagnosis. None of us really know much about living with mbc until we start doing it. From what you've said you've been pretty much out of it since your diagnosis, give yourself time to get your head round it. The first step is to realise that this may not be curable but it is treatable and there are very effective treatments available, your doctors have good reason to be optimistic. Many of our oncologists have described mbc as an ongoing long term condition.
Your muscle strength will return as you start moving around and I think the suggestion of physio is really good but you will probably need to ask for it, it won't necessarily be offered unless you do. Recovery time varies for everyone, just give yourself the time you need to find your strength again. The right level of exertion is hard to find and you will probably find that if you overdo it it takes longer to recover. Make sure you listen to your body and if you need to rest, rest. Fatigue is a side effect of the meds too and you have to learn to deal with it. The physical symptoms you describe are a completely normal physical reaction to what's happening with your mind and body.
Anaesthetic has a huge impact and some people find it has a depressant effect and so is morphine. It takes time for these drugs to fully leave the system. The real problem with this disease is what it does to our heads. Having someone independent to talk things through with can help tremendously. You can say things to a therapist that you couldn't say to any one else. Saying the unspeakable out loud can make it less scary.
Stop thinking that you aren't being a proper mummy. You may not be up to doing the everyday stuff but you love your kids. That's what being a mother really is. You will take up the reins again when you are feeling better. Let yourself be looked after for now, you'll soon be back to looking after everyone else.
Life will never be as it was but this doesn't mean that it will be worse than what you had before, just different. Be kind to yourself and give yourself time to heal and grieve for what has gone.
Thank you Julie, that is an amazing reply, I feel encouraged by your words. When were you diagnosed? You sound as if you have managed to accept it. I find it hard to put my full faith in doctors but I’m going to have to learn. I think I’m still feeling the anaesthetic 4 weeks after - do you think that’s possible? X
I'm no expert but I've been told that the effects of anaesthetic can stay in your system for more than 8 weeks. From my own experience I can believe that.
I was initially diagnosed and treated for breast cancer in 2016, had a year on tamoxifen and then had my mbc diagnosis last march. I have widespread bone metastasis and had a broken vertebrae. The first months are really tough, you are in shock, constant pain and the thought that you have cancer just doesn't leave your head. For me it was like a squash ball constantly bouncing around. And if yours is hormone positive you have to deal with your hormones too! Just when you thought things couldn't get worse!
The treatment should help with the pain and as that subsides you should start to feel better but it takes time and energy that you won't have at the moment which is where time comes in. You are going to feel better never forget that.
Let your family look after you. Your husband is probably feeling absolutely helpless. Letting him take care of you will help him to feel that he's doing something positive, and that goes for any other close friends and family. That will take some of the pressure off you.
I have no trust in doctors, I've learnt a lot more from reading the posts on this site than I have from the medical team. When first diagnosed I was anticipating death at any moment. Reading the posts on here has made me realise how many treatment options are available and how effective they can be. I also realised that I wasn't alone and when I need to let off steam or rant there is someone who really understands.
So small steps and let yourself feel pleased when you've achieved them and don't beat yourself up if you don't, just try again tomorrow. As your energy improves start to put a simple structure into your day, that might make you feel more positive and as though you are starting to get yourself back.
When you look back on this time you will realise that it was a short time but at the moment it feels as though it will never end. It will.
Hi Julie, you haven’t written too much at all! So kind of you to write at all. I was 2016 too, came back last November. So unfair, my mum and my aunts all survived it. I was only 39 so I wasn’t looking out for any signs. Mine happened during pregnancy which is an extra kick. How can there be an illness so cruel? Wish I’d gone to the doctor sooner but those thoughts I have found are very destructive. I’m so pleased that you are reassuring me that I will get better and that the treatment works. When I was in hospital I was pretty out of it and I thought they said 2yrs but I’ve since found out that it’s 2.5yrs meridian time on Ibrance so I guess that means up to 5yrs but they did not make that clear at all. Mine is hormone positive which I guess is a good thing in treatment terms? X
I lost 3 of my aunts to this disease back in the 1990s and 2 uncles to prostate/testicular which they now seem to think is connected. They all went within a few years of diagnosis but the treatment they received was so different to what's available to us. My mother has 9 brothers and sisters and she is the only one who hasn't been affected by this disease.
I knew mine would come back but couldn't get an appointment to see my oncologist and my gp diagnosed arthritis. First time round I was told I wasn't the type to get cancer and it took me a year to get to the consultant. But as you say 'what ifs' are destructive, we are where we are.
Its a disease with a very sick sense of humour, I can't imagine what it must have been like to get a diagnosis while pregnant.
If any one gives you a timeframe until you've exhausted all treatment dismiss them. No one knows and there are plenty of women who have been on first line treatment for many years over in the states where it's been available longer. Statistics don't apply to individuals. Lots of ladies move off ibrance quite quickly because of the side effects which brings the average time of use down.
I'm now on my 12th cycle of ibrance 125, faslodex and denusumab. I didn't have the awful time you have had to start with but it wasn't a good time so I can understand what you are going through. I am very lucky that the regime suits me and hopefully it will suit you too.
I'm now 51, I work full time and drive a round trip of 90 miles to and from work each day. I enjoy photography and walking, I swim and do pilates, I have 2 grown up children living at home creating mess - a normal life, but I do get tired.
I have to make sure I get enough sleep, eat a balanced diet and exercise within reason and rest when I need to.
Seeing my aunts cope with bc was a lesson, they all made the decision to live until they had to stop. No one knows what is going to happen tomorrow and no one is promised tomorrow, in a way we are the lucky ones because we know that we have to value every moment. Let yourself look forward to feeling stronger. My son is 21 today, not long ago I worried that I wouldn't be here to see it
Thank you, I’m so pleased that you are able to have such a fulfilling life on Ibrance. I’ve been so worried about taking it after seeing the side effects. I took it for a week and ended up in A&E then another week and stopped for surgery (my white cells were then too low to operate). Then I took it for 9 days and was fine so I’m 3 days in to hopefully my first full 3 weeks so then I’ll know what to expect. Have you found the fatigue has improved over time or have the side effects you’ve experienced been constant?
Sorry to hear about your family history. I mentioned to someone medical that there was breast cancer on my mums side and prostate on my dads and she said that was a very bad combination so perhaps that’s why I’m here? I do worry about my brother. We’re your aunts and uncles roughly the same age?
I’m so pleased to hear that you got to see your son turn 21, that is obviously a complete dream for me with my children. Let’s hope for advances in treatments.
You are so right about tomorrows, I will reread that next time I’m having a meltdown.
I also really like photography, walking and swimming - I can’t wait to be able to walk again.
The oncologist told me to drink 3 ltrs of fluid a day while taking ibrance and I nodded but thought that's ridiculous. Well it really helps with any side effects. When I get dehydrated I get tired. For the first few months I used to have to nap at work. I have amazing colleagues and the ability to sleep sitting up, and as long as I don't snore they don't disturb me. Though falling asleep during a briefing from the director of finance was a little embarrassing! but the fatigue has definitely improved.
I've had gene testing and I don't have the Braca genes but I was told that they are still looking for others that predispose you to cancer. My granddad had stomach cancer in his 40s and unusually for the time survived. I was told that they think there is a link between stomach, breast and prostate cancer. My uncle's and aunts who died were all in their 50s or early 60s. I was annoyed when I was diagnosed at 47, I expected to get it but not until my late 50s.
I worry about my brother too and he's used to me asking personal questions about his need to urinate during the night
There are advances in treatment happening all the time You will be back out with your camera before you know it, though you may need a new light weight carbon tripod
I agree with laurac1014, finding laughter helps release some positive endorphins which go a long way to bringing you slowly out of the ‘fog’. It takes some time but you’ll get there, one day at a time.
Lots of good advice from all of these great women! But I understand about wanting a time frame. It helped me stay together and keep moving one day at a time. My doctor told me “by the end of the summer”. I was diagnosed in April, had extensive bone mets with 2 thoracic compression fractures that were giving me enough pain that I slept in our recliner for two months because I couldn’t get in and out of bed. After radiation to the fractures and continuing treatment with Ibrance and Letrozole, I hit my new normal in September. But I did not have major surgery. But you are younger and more fit to start. All those things make it very hard to predict. PT helped a lot with the weakness that was the result of not moving for two months. I did what I could and took as many rest breaks and as long as I needed. In the beginning I planned on one thing per day and then two things. And that one thing was a shower and getting dressed and I was exhausted. Now I am playing with grandchildren, quilting, and just returned from a reunion cruise. Just know that it will get better. I was glued to my iPad in the early months. I could blot out things by playing games and reading, and stay connected with texts and emails. Do whatever works for you.
Hi Red, thank you for your message, it’s good to hear from someone else who was bedbound by this. I was so ill when they diagnosed me. I’m at that stage now, sometimes I don’t manage a shower then I feel rubbish about myself, good that it’s not just me. How is your back now? Do you still need painkillers? X
The initial back pain from my compression fractures is gone due to having them irradiated but I have so many other lesions in my bones that I am still on pain medication. I wear a Fentanyl patch and then take Dilaudid for breakout pain. What are they giving you for pain? If it’s not enough, talk to your docs. That combination allows me to do the things I want, but I’ve never been a runner or big exerciser. I have been told my pain will never go away due to the damage the cancer did, but I can deal with that since my docs don’t question my need for the pain medication. When you do start moving more I would recommend PTand swimming. PT worked on my balance and leg strength which came back quite quickly with the right exercises.
Don’t ever think of yourself as a failure. You are a champion dealing with pain. If you do nothing more than get through another day, you are that much closer to feeling better. Hang in there!
Yes, I can walk a couple of miles. Standing still and sitting in the wrong chair are both things that set my back pain off but up and moving isn’t too bad. I haven’t tried much except fairly flat. I kept up with my 6 foot son and his wife and kids on a short hike we did the other day when there was still some snow on the ground. They didn’t slow down for me...and I realized they have much longer legs, and the kids ran circles around me, but they are 5 and 8 year old boys! It felt good to be out on a clear cold day. You will get there. I could not imagine being able to do that 6 months previously, when I was hobbling around with a cane. I also have a marvelous massage therapist who really helped when I was able to get out of the chair.
Hi, I am sorry to hear what you have been through. Just to let you know that things can improve and you can feel back to normal again with a bit of time. I was diagnosed de novo in May 18, it was in all my spine, pelvis, hip, femur and a tiny spot in liver. I had 3 fractures in my spine and I had to have a total hip replacement op to be able to walk again. I am 44 with 2 small children. For two weeks I was in a wheelchair and they were not sure if I could be operated on. That was the toughest time of my life, thinking I was going to be disabled for ever. I could not walk my children to school, cook dinner, or move much... however...I started Ibrance, radically changed my diet, supplements... and little by little I started regaining my strength. Every month I saw a little improvement. My latest scan showed no disease in any bones and primary reduced by more than half. It's amazing how our bodies can regenerate. I feel good again, I go to the gym 3 times a week and I feel back to normal! So there is hope and you will get there with a bit of time!
Doctors did not tell me anything about recovery frames and it was scary thinking that I would never get better but you will! All the best xx 💕
Hi Eva, thank you for your message, I am 42 so we’re almost the same age. Great to meet someone similar to me. I have felt very alone through all of this. I was in a wheelchair too for several weeks, not a positive experience. Did your spinal fractures heal with Ibrance? I’m hoping that will be the case with my neck. Originally they were going to operate but couldn’t reconcile the risk. All very scary. How long did your hip take? Are you able to take your children to school now? And cook etc? I’m trapped in bed or in my chair for most of the day. When my husband has to leave me on my own I freak out because I can’t do much for myself so I feel very vulnerable.
What diet do you follow and what supplements do you take? I’ve been taking CBD oil for anxiety but I think it makes me have less energy but at least it sedates my mind a bit. I think being able to go to a gym would make me really happy but I don’t even think I could go to a cafe at the moment.
Very encouraging to hear that you are 6 months ahead of me and feeling a lot better.
I’ve just had a ride out on my horse..not far or fast but some trotting ..had to take strong painkillers but what the hell
It’s distressing being by yourself..this happens to me a lot..my husband just goes off and does his own thing which upsets me sometimes..my daughters are grown up and one in London and I miss them dreadfully
So I have to force myself to go out even when I don’t feel like it..it must be dreadful when you physically can’t do that...it won’t last forever..just keep telling yourself that
I used to go up to see my horse and cry all over him..was too weak to even groom him,. Now I’m back on board
Hi, You need to get as much help as you can at the moment. It will hopefully only be a few short months before you start feeling better and then you can get back to normal. My mum stayed with me for 5 months, she would shower me, get me dressed, etc. Also my husband was great. He was my chef and juice maker, still is sometimes! I am very lucky to have such support.
Re: medicines, I am also on Zometa and I think this really helps to heal the bones. I still need to rest my back every now and then, especially when I do a lot, but it resets and pain goes away again. I took paracetamol everyday for 9 months straight (and some morphine) but stopped after my hip op probably sometime in July last year. I have not taken any painkillers since then.
I follow a plant-based diet, no sugar, no dairy, no glutten and occassionally fish. All organic. Veg juices twice a day. Feel healthy and with energy. Also take turmeric, mushrooms, glucosamine, Floradix, Omega 3 fish oils and a probiotic. Nourkrin for hair thinning as it can thin with Ibrance, especially at the beginning, in my case.
I have a normal life and do all the things I used to do before. I have stopped working, though, and have a more relaxed life, however, I am thinking of starting my own business soon!
Good books to read to make you feel better: Radical Remission, Chris Beat Cancer, How to starve Cancer, Tripping over the Truth and The Cancer Revolution by L. Connealy.
Thank you. I started a business after my last treatment, producing prints from my paintings. I was doing really well and had a little Gallery space. I’ve lost it all since I’ve been ill, no more studio etc. It’s broken me as it was my dream. I’m so pleased to hear you are thinking of starting a business that gives me hope I could start mine up again from home. What are you hoping to do? Do you feel nervous about progression or are you completely confident with your meds? I’m Ibrance and Letrozole. I was going to say no and do just cannabis oil at one point but I wasn’t brave enough and now talking on here I’m beginning to have faith in the drugs. How is your hair now? I have a similar diet, I had been thinking what’s the point with taking chemo but I can see that you are doing well on it so that is good. I’m so pleased you messaged me I was on a Facebook group for young women and it was really negative - everyone freaking out like me! So to hear from you has been amazing. My husband just took me out to get some air and we bumped in to a friend’s husband who was going on about what a great life they are having. I’ve not seen anyone since my diagnosis- just family. So I’m guessing this is something else to get used to. We were in the middle of trying to sell our house and now all plans for the future seem irrelevant or pointless. I can’t look at Facebook anymore as I can’t bear seeing other people who are not ill - have you conquered this as well? This ‘new normal’ is going to be hard! X
Hi, you are going through the worst at the moment, so everything seems bleak. I remember being bed-bound and seeing my friends' photos on walks with their children... it was very sad... but I can do that now 😊. I was scared of starting Ibrance (and letrozole) but it has not been that bad, better than chemo! I was very upset when my hair started thinning but it stopped after 3 months and I have tiny hairs growing now. I wear the halo couture extensions sometimes.
I am reading as much as I can and I feel more hopeful. I don't think we can trust 100% the current standard of care, as all they do is treat the symptoms and not the cause. That is why I am doing the diet, etc because I believe we have more chances of surviving adding other things and not just by taking a pill.
I am a bit paranoid with all the chemicals in beauty products and started making my own, which I love. I also started making my own natural soaps and candles and I am starting a little business selling those. I want to create beautiful but completely chemical free products. I was a teacher before so I am doing something completely different for now. Hopefully you will be able to get back to your business soon, it sounds like you are a creative person. For now though, just rest lots to help your body get better!
I agree with you about not completely trusting the treatment we are on. After all, once we hear the words "metastatic" or "advanced cancer" oncologists are focusing more on alleviating our symptoms rather than treating us with a view to a cure. This is in contract to the way they would treat patients who are diagnosed with early stage breast cancer. I can attest to that, because when I was initially diagnosed last year I was told it had been caught early and did I want a lumpectomy or a therapeutic mammoplasty? They didn't even entertain the idea of a mastectomy.
I feel the same as you about gradually moving more towards natural products. My deodorant, hand soap, washing up liquid, toilet cleaner and a few other things are made from natural products.
I am also reading as much as I can about cancer, particularly cases of radical remission and how other metastatic cancer patients turned the clock back and were healed and even cured from their disease. We can all reach that stage too! I have confidence and faith in that. I will not accept that there is no hope.
It is really frustrating that they are looking at alleviating our symptoms but not at curing us. On Monday I saw my onc and I mentioned my good ultrasound results (it has reduced by more than 50%) and it is small enough to be operated now. However, she did not give any importance about the good results and also said that having an operation or cryoablation might not be of any benefit (again probably because they think that at stage 4 we are always going to have this disease). She reluctantly said that maybe in the future we could consider it. I left quite deflated but made me even more determined to try and achieve remission. xx
Your oncologist sounds a bit like mine. She has been giving me good news since August, the tumour has been shrinking, and I am stable, but she still feels that surgery is out of the question. I'm seeing her tomorrow morning for my CT scan results. I already have my pathology results printed up to refer to and I am onto page three of notes that I want to go over with her.
Yes, that's my hope too! I started reading How to Starve Cancer yesterday. I am already on my third page of notes. Once I have read it through thoroughly I will devise a plan of action and show it to my oncologist. She already knows I favour an integrative approach. She has approved of what I have done so far (physiotherapy, exercise, diet and so on). Hopefully she will be on board with the next stage of my plan. If not, I will try my GP and if she isn't interested I will look for a private doctor to help me. Our very lives are at stake.
I am on Jane McLelland's Facebook page. It is very interesting and you can learn lots about the different repurposed drugs and people's experiences with them. My best friend is a diabetes consultant and is currently reading How to Starve Cancer and she told me she thinks it is very interesting what Jane proposes. I am happy that doctors are not dismissing it.
On Jane's page a few people are recommending integrative doctors such as Dr Rosenberg in USA and Dr Callebout in UK. I think I will get in touch with Dr Callebout at some point in the near future. I will feel better having some guidance from an integrative doctor so I do not solely depend on my NHS onc's opinions.
I am also a member of Jane's Facebook page. I have come across some interesting information so far. There is so much to learn!
I have heard of Dr Rosenberg too, but I don't want to travel to America for treatment. Whereabouts is Dr Callebout based in the UK? I also want an integrative approach from doctors who are open minded and willing to try to cure us. I don't want to just be seen as someone who is on borrowed time, but a real person who deserves to live. I am not holding out much hope from my oncologist. I'll see what she says when I see her tomorrow.
Hi Eva, did you go through menopause with Zoladex? I’m an emotional wreck and I was wondering if it’s the Zoladex. Do you know how long it’s supposed to take? My nurse said a few months but I don’t know who to believe anymore. I asked Sophie the same question. I hope it’s not a bit personal x
Hi Sophie, are you planning to stop taking the chemotherapy drugs in favour of a different approach or as well as? I thought about Rick Simpson oil for a bit and did a lot of research. I found that ER+ you can do it with a different ratio of oil but then I got scared and took the chemotherapy. X
I'm not on chemotherapy. I'm taking aromatase inhibitors and bisphosphonates. My plan is to incorporate conventional treatments with alternative therapies, with remission as my goal.
Sorry to be nosey but do you know why? I’m just about to be transferred from a big hospital in oxford to our local hospital in Dorset and I’m really worried that they won’t be able to offer me the latest treatments x
I was premenopausal until they gave me Zolodex - just finishing my 3rd month and I’m definitely menopausal now! Maybe that’s why they didn’t start me for a month or so? I know some people have it for their second line. So hard to know if you’ve agreed to the right treatment x
Sorry lots of questions... did you go through menopause with Zoladex? I’m an emotional wreck and I was wondering if it’s the Zoladex. Do you know how long it’s supposed to take? My nurse said a few months but I don’t know who to believe anymore. X
I am on Zoladex, Letrozole and Zometa. My periods stopped two weeks after my first Zoladex injection. I still have my ovaries, so that's why I have to continue with the Zoladex. The emotional toll is normal following this diagnosis. I don't think anyone can put a time limit on it, as your emotions are bound to go up and down. x
Just to encourage everyone, I was diagnosed stage 4 de novo in February 2016, thanks to ibrance and letrozole my tumor is gone and my bone Mets have healed. I’m so glad now that no one offered me surgery!! Although I did have my ovaries out in March of 2016.
I am still on ibrance and letrozole and my last scan showed no evidence of disease. I also am following a plant based lifestyle.
My insurance company approved it in July of 2016, and I’ve never missed a dose. I’ve had good news scan wise ever since. I only have scans once a year and see my doctor every 3 months. I’d say a year in I had come to terms somewhat with the diagnosis but my sons are grown up, I think
It would be much harder with young children.
Sending you hugs and I promise you will feel better!!!
When first diagnosed I was very strict, no sugar no oil no animal products etc. now I occasionally will have sugar or will eat something with oil. Luckily my sons and their significant others have been vegan for sometime and my husband embraced the lifestyle wholeheartedly. I’ve gotten to be a much better cook and we are much healthier!! I actually always thought at some point I would go vegan because I am an animal lover so this has been a change I’m quite happy about. I also do not drink any alcohol. Which was actually tougher to give up than animal products!!!
That is great news! This is what we are all trying to achieve and it is very encouraging to know that it is possible. I am sure the plant based diet is helping the drugs work better.
I think it is great that you do not have to go to hospital as often, every time I go my heart sinks!
Are they planning to keep you on Ibrance, etc. I think the 'grey' area is to know whether it is possible to stop medication once there is no evidence of disease.
My oncologist and I discussed going off it but quite honestly my week off I don’t feel quite as good, I don’t sleep as well either so he said let’s not change anything then for now. I’ve talked to other women also who don’t feel as good on their week off.
I'm so sorry you have had to go through all you have been through. Damn cancer! I wish you the best in your recovery. Sounds like you have a wonderful caretaker. Take it slow and it will get better. You may want to talk to your onc about some meds for your depression. They really help. Mbc is such a crazy dx that we all need help coping. We are all here to help each other. You have found a wonderful place for support and encouragement and the perfect place to vent and also get real life advice. Love and hugs, Marianne
Thank you for your kind words. Yes I’m so happy to have found this forum. It is so hard to get my head around especially as I was holding out for life to begin at 40 and now I have no idea what’s going to happen! X
It is so hard to wrap your head around. I really think everyone on this site is still trying to do that. I wish you well on the path ahead. I pray it's an easier road for you.
Oh my sweetie! You’ve been through the wringer with this thing! And right off the bat too...sending lots of prayer your way...and to answer your question I tell people it takes like a year to get used to it...at first it’s all consuming then it’s like annoying seasonal allergies that u deal with twice a year but the rest of the time life goes on...and it will get better once u recover from this major surgery...😀💕
Thank you, yes it’s been shocking! Hopefully I’m not too damaged and the drugs do seem to be working. I’m feeling pretty fearful of a future of treatment but you are all managing it so I need to be brave. How long have you been dealing with this? X
De novo means from the beginning...I’ve always been stage IV...I’m triple positive so I’m on Perjeta Herceptin Zoladex Arimidex And XGeva...no real issues now! 😀
Honey, with God ALL things are possible to those who believe! We must have hope ALWAYS! It is the greatest gift ever given to us. I hope with all my heart that this will find you well and healing; I pray to God, in Jesus name, that you are totally healed and able to have a full and abundant life, and raise your babies! I pray that the Holy Spirit will lead you in all wisdom as to your treatment choices. I have heard such wonderful things about ibrance, praise God, I have faith that this WILL WORK FOR YOU and thanking Jesus in advance because, you know, He is the Great Physician! <3
Hello! You are right to feel the way you are feeling. You are going through a lot of pain and heartache. I believe we all are in shock with the diagnosis and in tears. I was scared at first, in disbelief and didn't understand why this had happened! There becomes a "New Normal". I was diagnosed in May of 2017, Stage 4, ER+ PR+ Her2-, metastasized to my rib bone. Fortunately, there was only spot on my rib bone. I had a single mastectomy and have been on Ibrance and Letrozole since July 2017. I have had 20 cycles of Ibrance at 125mg. with few side effects, however this month is the first month that my White Blood count has been too low for me to start the medication.
I have gone through the crying, anger, fear, acceptance. And I go back through these cycles. What I fear the most is not being here for my children, and not seeing their lives unfold. But many days, I totally forget that I have cancer. My life has changed and I know it will never be the same. I try my best to take care of myself. Many women are so nurturing we forget to take care of ourselves. So, that is key. Learn to take care of yourself, say no to the things that you don't have time to do, and listen to your body. Meditation or prayer is very helpful. Diet is key to giving your body the nutrients that you also need to heal. I have turned to a whole food plant based diet. It is easy for me, because I love vegetables, grains, nuts, beans and fruits! But as my husband says, he would starve on my diet. I work full time as a 5th grade teacher, and love what I do. The kids keep me young and keeps my mind off of me for 9 hours a day. I hate getting up so early, but working is better than sitting at home being idle.
In the beginning of my diagnosis I had many many questions. I came with questions at every appointment to my oncologist. And by the 4th appointment, he said to me "Theresa, just live your life." I was so upset! I felt like saying "F...Y.." to him! How could he say that to me? He didn't know what I was going through! He didn't have cancer! But, after more months of appointments, and having NED with my scans, I am understanding what he meant... which is enjoy the time we have now. Enjoy the moment we are in. You are going through a most difficult time right now, and it seems impossible to think of how your life will be in the future. But, I am hoping you will feel better and soon be able to move on to your 'new normal'. God Bless you, and all the women on this site, and our families. XO
Thank you, you are amazing for being able to work through this, you are lucky yours was picked up before it had gone too far. Thank you for your message X
Thanks, Sandra! I have just gone over my three pages of notes with my husband that I want to mention to my oncologist. When I saw her in November I had seven pages of notes to discuss. She must hate me!
Do you feel much better in yourself now? I’m very weak, my CA15-3 is about 225 at the moment so I’m guessing I’ve still got a lot going on. Hoping it will go down and I’ll feel almost normal again - do you feel normal? X
I feel very normal now, I work full time and work out everyday. But remember I have 3 years of this under my belt and I don’t have small children. You will bounce back and your tumor markers will go down.
I don’t know if you are on Instagram but if you are check out Stephanie Seban, Nalie Austin and authentically Leslie. These are just a few that will inspire you. When I was 1st diagnosed I felt so alone, my husband was wonderful but he was dealing with his own grief and I didn’t want to add to it. There are a ton of women who were in such bad shape and they have recovered. On Instagram if you put in ibrance as a search tag it will bring up a ton of women who are just like us!!!!
Thanks Sandra, I really struggle with the hope part of things but everyone is saying it gets easier so I guess there’s hope in that. Thank you for your message X
It is really hard what you are going through, it will get better little by little yes at the beginning is really hard to accept this diagnosis, but now thre are different chemo pills and Ibrance works
It is very important your attitude, of course you will have good and bad days
Take one day at the time
In my case my first cancer was thyroid cancer in 2001 then 2014 breast cancer stage 2 I decided to have bilateral mastectomy to avoid recurrences, I had chemotherapy and radiation and took tamoxifen, I was on shot term disability for 6 months but my cancer came back
In July 2017 I got MBC diagnosis cancer on my bones, I was under control with my oncologist and everything looks ok
On May 2017 I traveled to South America and came back sick I was having difficulty breathing so I had different test it was a bad GERD reflux and my the doctor ordered CT of my chest where it showed metastasis bone cancer on my ribs, I couldn’t believe it, I started Ibrance Letrozole and Xgeva I took it for 16 months and it stopped working I have progression of my cancer I am taking Versenio and Falsodex, I have a lot of pain on my hips
I try to live my life thinking I have a chronic disease and I try not to focus on my pain I changed my diet supplements, calcium vit D3 glucosamine Turmeric Biotin probiotics and others vitamins but for now I stopped I am only taking calcium and vit d3 because I have gastritis I do exercise and walk and all this time I have been working full time, I keep traveling, and I Keep praying it really helps me too
On this website you will find people who can help you.
Hi Toomanyquestions, I wanted to let you know that like you I had a pin placed in my femur. I found out that I had MBC when I got up one morning and could not walk. In the ER they determined that my femur was about to break, and gave me the shocking news that cancer was the cause. I ended up with a pin in my femur. Once the incision healed, I went through radiation therapy. During radiation therapy, I started have a lot of problems with my back as well as my leg. I couldn't lie down and had to sleep in a recliner, and then I had to use a walker to walk. My radiation oncologist prescribed physical therapy which greatly helped with the back, and my walking has gradually improved. In August I was put on Ibrance and Letrozole as well as Xgeva injections (every three months).
I mostly want to let you know that as of today, I am really starting to feel a whole lot better. The physical therapy seemed to work and my walking is a whole lot better. I am doing strength training exercises in the gym (nothing extreme) but the weight seems to be helping my leg feel better. My last scan was the first one in which I received stable results, so I am really hoping that that continues with the Ibrance and Letrozole combinatione as I have been able to tolerate the Ibrance and Letrozole combination well.
I cannot imagine how difficult it would be to have pins placed in both femurs so close together, but I do want you to know that I am confident that you will feel better as I do. It may take longer than you want. I am not the most patient person so that part was hard for me. It sounds like you were in a lot better shape than I was when you had your pins put in, so I am thinking that you will probably experience a full recovery faster than I did.
Thank you so much for your reply. Yes 2 femur pins has been terrible and the anaesthetic from x2 long operations sent me completely loopy. I’m glad to hear you are feeling better. That is really encouraging, I’m also very impatient. I hate having no stamina. I really look forward to being able to work out. Thank you, you have cheered me up Xx
It is hard for me to remember but I think it was probably three weeks to feel like I was over the anesthesia and was able to stop all painkillers. I didn't like how the pain killers made me feel so I tried to wean myself as quickly as I could. However, please remember that I only had one operation, and it was not a long operation. Two operations probably will take longer. I will say that the first three months were the hard months, and then gradually I started to feel better, and now I am feeling pretty good and more like my old self. My mom says she knows I am better because I am walking a lot faster than she can like the days before surgery. Hope this helps! Take care!
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