Hi, I remember the same thing after starting palbociclib. I kept waiting for the side effects to start after hearing they could be quite bad. Tbh mine never did. I’ve had a few days where I’ve felt bad due to headache/nausea at the start of each cycle but things have settled down now I’m on cycle 4. My team said the goal was to make me feel like I’m not actually on treatment and they have lots of ladies on their books who feel like that. I originally thought they must be talking nonsense but actually after a few months and things settling down they were right. Most days I don’t feel like I’m on treatment and I’m able to have moments in the day now where I don’t think about the cancer. My hospital have around 20 ladies on palbociclib and they’re all dealt with by the same person so they’ve got quite a bit of knowledge about the drug and side effects - more so than my BCN - so I speak to them if I have any problems. But as it’s new to the NHS they are constantly learning about how it affects different people. I’ve got lung mets and bone mets (spine, rib, sternum and pelvis). I’ve also spoken to lots of ladies on this combo and whilst it doesn’t suit everyone a lot of ladies are doing very well on it xx
Thanks so much for replying. I have just taken 125 Ibrance (day 5) and still waiting for side effects just as you say. I am a bit obsessed with my hair though, and, even counting how many hairs I lose when I comb in the morning and at night and taking note of it. I used cold cap 4.5 years ago during chemo and retained as much as 50 - 60 % of hair, worked hard on it and would not like to lose my thick hair now. The hair issue I sent just an addition to the anxiety of having been diagnosed with secondary bc.
Hi 4748- I’m on the same treatment as you and currently on my fourth cycle. My first scan shows the treatment is working and most of my mets have shrunk by 50% after being on treatment for just under three months. I also wanted to respond to your concerns about your hair thinning concerns - I know this is listed as a side effect and some ladies do experience this - but my hair hasn’t thinned at all. I have really thick hair and my hairdresser hasn’t noticed any difference in its thickness at all. The only think I have noticed is that is is growing a lot more slowly but that just means fewer hairdresser appointments. So it might be worth waiting and seeing what happens with your hair before getting it cut unless you wanted a change in hairstyle anyway? I’ve not done anything special with mine - still using exactly the same shampoo and conditioner and also blow drying and styling it everyday the same way I did before starting treatment xx
Many thanks for your reply. I have a solitary bc mets in my T-9 (praying there will me no more since last scan and starting treatment 4 days ago with Ibrance and 11 day shift with Letrozole). I was very close to spinal cord compression and had emergency x10 sessions of radiotherapy early Jan 20. I am hoping to get SBRT in May but first need pet/ct done in May to review whether treatment is working. The last few days I have picked up a little emotionally but still finding the diagnosis very hard. Feels like a death sentence and now, as if this is not enough add on top of it the ‘hair issue’ as side effect. I have very good hair too. Had it cut yesterday shoulder and really missing my long hair but obsessed with checking hair loss.
I have tried looking online how soon after taking Ibrance one should expect to experience side effects such as vomiting, not feeling well, hair loss etc but cannot find anything online. I asked one of the breast care nurses but there does not seem to be much knowledge on the drug - she actually thought it would be straight away - not sure about that.
Hello gilly flower
Thank you for your reply. It seems there is lots of different proceduree for crushed vertebrae, depending where crushed vertebrae is located on the spine i just hope mine isnt hsrdenes in that position you know? But least finally ive been referred to someone and im thinking he wouldn't see me if he couldnt do something you know what I mean xxddd
I am on the same treatment plan as you (plus I also have Zoladex/Goserelin injections). I was diagnosed with bone mets less than 3 months ago so I can’t give you personal confirmation as to the efficacy of Letrozole and Palbociclib. I do know that Palbociclib was only approved by NICE in the last few years and I have seen posts on here from ladies who have had positive results.
However, I can personally give you my own experience re hair thinning. After the first treatment cycle, I lost a fair amount of hair but this has has now slowed down to just a ‘normal’ amount of hair loss. I’ve read elsewhere that this has been the pattern with other women too.
Best wishes xx
Many thanks for your reply. I have very thick long hair (almost to waist length). I will be cutting it shoulder length tomorrow though cause I do not want to see long strands in shower. I hope I have no loss and hope treatment works.
Best wishes xx
Since i last posted i have been seen at the Royal Marsden in London. They have recommended the following treatment : Ibrance (Palbociclib), Letrozole and Denusomab. Started Ibrance yesterday and Letrozole 9 days ago. Still waiting for Denusomab. SBRT not offered at Marsden however, will have petscan in May and depending on outcome MDT at home might consider me having it done in Spain. At present apprehensive about Ibrancr an Letrozole working seeing i have not had biopsy and apprehensive about hair thinning/losing hair with treatment.
I recently had something called a corpectomy for a collapsed vertebra in my upper spine, near the neck.
Basically they removed the vertebra that had turned all soft and spongy and put a small metal cage with pins in to stabilise my spine. The surgery took around 4hrs. Recovery was fine and I was actually surprised at how quickly I was being told to mobilise and get back to normal (without overdoing it of course). I stayed in hospital for 3 nights after surgery. It was a really good procedure and I felt loads better afterwards, it really helped with all the pain I'd experienced prior to the op.
Good luck with your spinal appointment, let us know how you get on xxx
Lambo - sorry to hear you're in so much pain, it really makes everything harder doesn't it? Sending hugs xxx
I have been using hypnotherapy and music for pain relief - a bit alternative I guess but it seems to help me and there is some scientific evidence that suggests both have positive effects on pain relief for people with cancer. I'll see if I can find the links in case anyone is interested.
In terms of the travel insurance I'm sorry to say I have no idea! It does seem odd!
Hi I've not been on the forum for a while. I was diagnosed in April last year with bone and liver mets. I have mets in all my bones, but was wondering if anyone knew why there is a focus on mets in the skull. I applied for travel insurance and was specifically asked if I had mets in my skull!! As I say I've got mets everywhere but they were only interested in the skull.
i also take OxyContin and oxynorm for pain relief but still find the pain in my hips and knees unbearable. Anyone found anything that actually makes them pain free.
i hate this disease, I'm only 48 but feel about 98. X
Hi Nicky, I just wanted to thank you for taking the time to reply to me. At the moment I'm finding it hard to think about anything other than the scan results next Tuesday, I suppose that's normal though! Part of me doesn't want to get them because I'm afraid of receiving bad news, but equally this living in limbo is taking it's toll on me too. I suppose really the technician on Tuesday shouldn't have told me what was being looked at in more detail as it has increased my anxiety, but it has given me some time to try and prepare myself a bit for potentially mets. Since the scan I have been more aware of my back, but I suppose that's not an unusual reaction x
It will be very hard, if it is mets, to cope at the beginning. We have all been there and understand the fear, shock and sadness. However I think all of us, me included, felt better once a treatment plan was in place and also when we knew what we were dealing with. The main thing though (again, if it is mets) is not to blame yourself. There is no way you would know. I have actually been asymptomatic (ie no symptoms) pretty much the whole time before and after mets were diagnosed. I also didn't know I had a recurrence and even the breast surgeon thought it might be scar tissue and it was only a biopsy that showed it was a recurrence. They investigated after a routine mammogram showed up an area, which turned out to be a small recurrence. The other advice would be not to Google anything! Statistics are way out of date. Stick to informed websites such as this one and this forum has been invaluable over the years to swap stories with real women going through the same issues, treatments ups and downs.
I hope you get some answers soon and that it isnt bone mets, as I said in my earlier post, however we are here to help if it is.
My crushed vertebrae was due to my cancer
Yes that what my dad believes inksy have the injecting of cement has it helped you? I'm small anyway hahah xx
Helloo its ne cazzy if anyone remembers me im the one who hss suffered alot with back pain which we believe is due to ny crushed vertebrae ss hsd radiotherapy part of ny back which was t part and have had radiotherapy oreciousky on lumber thorasic femur skull and neck which has worked amazingly pain relief was such difference. Anyway my medical oncologist referred me to spinal surgeon who said he wanted up to date mri scan which I had last week anyway today i received letter with appointments in two weeks tl see him
Has anyone else had surgery on crushed vertebrae
May i ask, are you saying your crushed vertebrae are as a result of previous radiotherapy to back?
Hi, I had surgery for fractured vertebrae which was decompression and fixation. They shored up my spine with a combination of carbon rods, screws and cement. I believe for crushed vertebrae there is a procedure called vertebroplasty or something similar where they inject cement into the vertebrae. It is a short operation and just requires an overnight in hospital. A friend of mine had it done last year for vertebrae damaged by osteoporosis not cancer and she made a very good recovery. My spinal surgeon was very straight talking and clear about the surgery. I found the surgeons to be much more upbeat than the oncologists. One thing is people often lose a bit of height as the vertebrae are compressed together. Good luck with your appointment xx
Has anyone else had surgery on crushed vertebrae
Thank you Nicky for your kind reply. I thought 20 years for chemo tablets was optimistic as well, but I didn't want to say too much as YD was with me and I know she's worried. I have read some of your posts before and know that you've had bone mets for sometime now and doing well. I can't see how mine can't be mets as the consultant wanted a 3d scan done, surely arthritis etc would have shown up? I don't know if she was looking a my chest or spine, I assumed spine, but it could be my chest.
The thing I'm really struggling with is if it is bone mets, why didn't I notice and why didn't I spot my local recurrence a bit sooner because if it has spread, it might not have done then, so it's my fault and I can't get that out of my head. My mammogram was clear in August and the consultant said the hardness and lumpiness was from radiotherapy and normal. I've got a lot of scar tissue, so still can't really feel a lump. My breast had a bit of a mark on it, but I didn't realise it was anything for a few weeks. When I was told I had bc again, the nurse said although they'd done a biopsy, they didn't expect it to be cancer as it wasn't showing up as that on the scan, it just didn't look quite right. I just don't know how I'll cope mentally if I have got mets and be able to live a normal life without feeling sad all the time x
Sorry you find yourself worrying about the possibility of bone mets. I had a similar experience 12 years ago when I had a local recurrence and needed a mastectomy. The pre op scans unfortunately showed up bone mets and my mastectomy was cancelled. I started on chemo (I hadn’t had it, or it wasn’t deemed necessary, with my primary some 4 years prior to that) and then went onto hormone treatment . Obviously it was a huge shock to me as it was totally out of the blue, no lump to feel, no pain in my bones so I understand how you must feel. Hopefully the next scans won’t show that you have bone mets but if you do there are lots of treatments out there as your BCN has said. I do think she is being a bit optimistic about tablet forms of chemo working for 20 years however. But there are many treatments that have become available even since I had my secondary diagnosis which all work to stop the secondaries although you generally have to swap and change them as they become ineffective over time. Regular scans help with determining how effective a treatment is.
Once you know whether the ‘funny bone’ is or isn’t bone mets you will no doubt have more questions so do come back and ask away if it is found to be bone mets . We’re here for advice and support and can help with lots of questions and answers that you at not think of at the time of your appointment. Good luck with the next scan and fingers crossed it turns out to be wear and tear.
I hope you don't mind me joining your thread as I haven't actually been diagnosed with bone mets yet, but I've got a feeling I might soon be and I'm feeling very anxious and fearing the worst. I had BC 2 years ago and it's recently come back in the same place. Because it's a recurrence, I've had to have staging scans before I can have to have a mastectomy. Today I had the bone scan, but then also had to have a 3D scan on a 'funny bone' that the consultant wanted to have a closer look at. I was told this can often happen and it doesn't always mean cancer, but I've got it in my head that it must be now.
I then spoke to my BC nurse, who was very reassuring and said depending on the results, I'd still have my op and chemo either before or after. If the cancer has spread, I'd take chemo tablets and women can take them for many years-she said 20, is that right? I must say since the scan, I feel like I ache everywhere now! x
Hi FunnyFace and Mist11,
I am receiving treatment in Canada. But, most of my family members (my side) live in California. Some in SF, some in San Mateo, some in San Leandro. My brother in San Mateo 2 years ago bought another house in Philadephia.
My mom in law was diagnosed BC last year. Very early stage. She is a pharmacist in Kaiser Hospital I did not have a chance talking to her. She is receiving her treatment at Kaiser but my understanding, there does not have a cancer center (?).
My mom got her treatment at St Mary's in San Fran.
I am ER+ HER2+. My next 3 monthly CT scan will be in March.
Misty11, wish you all the best in your scan/biopsy next week.
Misty11, Where In the US are you from? This is a fantastic place for info and friends. If I can be of any help give me a shout. FF
You are not imposing at all - the Internet is great for making the world smaller and a warm welcome to you. It’s great you have found the posts encouraging.
I appreciate it’s a worrying and scary time for you and I sincerely wish you all the best with your upcoming scan and the biopsy.
Misty, I live in the US, too. About 30 miles west of Philadelphia. I have lung mets. They were discovered10 years after my primary. I have had them for 14 1/2 years. Due for a scan later in Feb. Hugs and best wishes, FF
I’m new here too. Cat scan Friday too see what’s going on. Biopsy next week. Scared and nervous. 11 years in remission and it decides to visit again. All of your posts are encouraging. I hope too I’m not imposing because I live in the United States. Thanks
My oncologist told me that single mets are very unusual as bone mets usually are around somewhere else in the body even if they don't show up on scans (I think they have to reach a certain size before they can be seen). She said the current survival time for my presentation is about five years but now because of the newer drug treatments available many more people are going on for longer. However the radiology consultant at the Marsden mentioned the possibility of the treatment being curative. Re follow up treatment I am now on abemaciclib 100 mg every day and have monthly injections of fulvestrant and denosumab. I'll continue on this until there is any progression which I hope won't be for a long time fingers crossed. I feel fine most of the time and just have some stomach upsets from the abemaciclib but this has improved a lot. Oncologist said I am doing very well and currently there is nothing worrying. Apparently my recent whole spine MRI was difficult to interpret because of the rod and screws plus cement at the operation site but it didn't show any new disease which is a relief. I had a biopsy before surgery to confirm that it was a breast cancer met and not a new spinal cancer but I have an idea they don't do biopsies after treatment because of the risk associated with a biopsy to the spine. Mine was done under sedation and CT and I had an overnight in hospital There was a thread somewhere here about it but not sure, it might have been on the Macmillan forum. Anyway good luck at the Marsden. I think it is very positive being offered stereotactic radiotherapy because the criteria are very strict. Keep us posted x
Many thanks. This is also what my radio oncologist said that SBRT would be curative for the solitary mets. Not sure what to think about all of this. It has come down as unexpected. I have not yet had SBRT done yet only conventional radio to protect spine - and it has worked. Keeping positive is still not coming easy. Did it take long for you to move on?
Hi Friday - I had stereotactic radiotherapy to my spine at the Royal Marsden Chelsea in September. I had a single met at L2 which caused a fracture and spinal cord compression and I had surgery to decompress and stabilise it at St George's Hospital. I was walking around with the fracture too and GP told me it was sciatica. A month or so after surgery I had three sessions of SRBT each lasting about 35 - 40 minutes. I had a planning CT and MRI a week or so before starting treatment. It delivers a very high dose targeting the area very precisely to avoid damage to surrounding tissues. I felt very tired for a couple of weeks but no other side effects. I slept a lot. I did feel sick immediately after each treatment but I think that could have been due to a separate issue of raised calcium. They gave me sickness meds which helped a lot. Everyone at the Marsden was very kind and helpful. Good luck with everything xx
Many thanks for this info. I have already had decompression to spinal cord with conventional radio. They tell me solitary mets are unusual though. I am hoping they can do me a biopsy of T-9. Prognosis wise what have they said with a solitary lesion and follow-up treatment plan?
I have radiotherapy in various parts back and spine if you want know anything
Update on cazzy land is I got mri scan in two weeks and the spinal consultant is going to look at my crushed vertebrae see if he can do anything I had radiotherapy to my t part spine few weeks ago ease pain but she doesn't think will do anything and so far not xxc
Still so unsure of how things will move on. Being in that uncertain place is horrible. Still finding hard to understand how this has happened. Next week 2 days of seeing Oncologists and then visit to Royal Marsden for their opinion there.
Hi again everyone,
Just wanted to hop on (after finally getting out of hospital last night) to say a huge thank you to everyone who replied to my post about a week or so ago. I am only just learning to use forums so its taken me ages to figure out how to post a reply!
I have had a type of surgery called a "corpectomy" of the C7 vertebra. Turns out the bone mets had been there a while, which I hadn't known about. As a result the C7 collapsed on a nerve (how I'd been weightlifting, walking and generally running around for the past 4 or 5 months I have absolutely no idea!) Radiotherapy to spine is next and then its hormone therapy and all the bone building drugs that go with it.
I wanted to share that I've found some good success with using hypnotherapy to manage my pain, deal with my stress and anxiety and keep me feeling relaxed as much as possible recently. I was lucky enough to get this through my hospice at my primary diagnosis and used it through chemo with good results. I've just been reading some interesting research articles for which there is some clinical evidence to substantiate its positive effects. I'm a bit fascinated by how much the mind stuff can affect the body.
Sending hugs to all of you who need it today xxx
Glad you are out of hospital and clearer about where you are at. Since last messaged ibhad pet/ct which just shows T-9 lesion. I have had 10 rounds od raditherapy to decompress spine, in my case too it is a miracle that i am walking. Oncology MDT on Tuesday will discuss my case. I have an apointment at the Royal Marsden London on the 31st Jan for opinion. Oncologist seeing me suggesting SRBT radiotherapy 5 sessions as curative, were you suggested this too instead of surgery?
Hi again everyone,
Sending hugs to all of you who need it today xxx
Hi sorry keep adding to the turmeric thread but it has my interest sparked. This is the best informed info I've found https://www.cancertherapyadvisor.com/home/tools/fact-sheets/turmeric-and-cancer/
Also to all of you a great big thank you for sharing. As a new secondary your ups and downs but the fact you're here still sharing is an inspiration and hope to all of us newbies.
Eribulin is given week one and week two (days 1 and 8) then nothing in week three until we start again on the next cycle, each cycle being the usual 21 days.
I have, through being in here for such a long time, heard of gem-carb so I do hope you are able to have it once you know the results of any tests.
Thank for your reply regarding your treatment. Is that one given weekly then?
It is probably too late for me I have often asked about a liver biopsy but never had one although the oncologist did say even st the beginning with my liver tumour is in an awkward position even for RFA or surgery.
If my kidneys are upto it they have suggested a chemo gemcitabine plus carboplaitin.
Good luck with your scan and results.
No problem with you asking, we have followed similar paths in our years haven't we?
I'm currently still on Eribulin with a scan due this week, results not until 2-3 weeks later which I'm happy to wait for to be honest. I've been doing ok on it, just fatigued when I do too much, and all the niggly smaller side effects get you down at times but you have to put up with them. I had an extra week off this last cycle to give me a chance to recharge the batteries a bit but back on it this afternoon for the next dose.
In sory to here your news linda i oass yih bug hugs and hooe they find yiu teeatment il have my fingers and toes crossed for you
Love cazzy and lister cat xxx
Thank you for your reply. The oncologist I saw yesterday was shocked at how things have changed . Stress can play a big part I think.
If you don't mind me asking how is your treatment going? I can understand if you don't want say.
Turmeric seems to have no known side affects from articles I've seen but the research is limited. Some say this is because the drug companies can't patent it, I know cancer is big money to many but seems odd to me. Having said that you can't ignore it's results so I will be asking my oncologist about taking it too. Thanks for the question Rosie it has sparked my interest. 🤔
I have also replied on your CT Results thread and then saw this posting as well from you. You know we are here to support you, as you have done for us over the past 10 years. As you mention about the death of your sister maybe speeding things up. When my Dad died very unexpectedly in October 2017 I was under huge stress supporting my Mum and dealing with all the legal stuff and thought to myself at the time that if my liver mets were going to come back then that would be the time (this was after my liver resection when all of them were removed). And of course they did.
Huge hugs to you , take care and keep in touch when you can.
You could have knocked me down with a feather one minute to be told stable at last scan in September then this I new things could go wrong did not realise how fast. My advise to you girls is live life till the full. I must admit I certainly did.
Thank you all for your kind wishes much appreciated.
Hi true2wish, thank you for the info I will look into it, I did clear it with my oncologist before starting on them and she said it was fine????
Linda I’m so sorry you have had bad news today, stay strong, hopefully they can get you on some treatment soon!
take care, huge hugs Janette xx
Oh Linda, I am so sad to read this post about your results. Let's hope that there is something you can be given as soon as possible. My thoughts are with you.
Sending (((((cyber))))) hugs,
Hi all bone mets ladies
I have posted on the CT scan results thread but I thought I would also say it here as all you lovely ladies have been such a good support over the years.
I have not had good news today more spread to liver also 3 brain mets. Think with loosing my sister in November last year suddenly has quickened things up.
Depending on my kidneys there is a treatment they can try.
Once again thank you ladies for your support over the 10 years.