Breast Cancer Now Forum

Hi Pawsome Started second cycle on monday.  Do you not get hair on brush and thin hairs falling on wash hair days?  I find i do ... View more

Today  started my second cycle of Ibrance.  I keep taking Letrozole.  Tumour markers were seen to have gone down last week in clinic.  PET will be performed on 30 April.  Hair issue still concerning me.  I have noticed more hair shedding especially when I wash my hair.  In your reply a few weeks back you mentioned you waited for side effects to come, do you mean by that  that you also did not experience shedding hair/hair loss/thinning? ... View more

@lollypop84 wrote: Hi ladies,  I had my first zoladex implant 2 weeks ago and today I’ve got lower back pain, is that a side effect and had anyone else had this? I spread to my spine so any ache or pain I tend to panic about xx   Hi lollypop84 Started Letrozole and Ibrance 4and 3 weeks ago.  The last few days back ache has returned (not as bad as before).  I had 10 sessions radio to decompress spinal cord compression which did the job and had no pain until the last few days.  I find area of back treated sore.  I especially feel as if my back on that area struggle a little fatigued when I walk and also feels like tingling heat when I touch area.  Not sure whether this is side effect of radio wearing away.  This is my experience at the moment.  I also worry because my mets is to T-9 .         ... View more

@Pawsome wrote: 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.  ... View more

@Pawsome wrote: 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. ... View more

@Ruby2016 wrote: Hi 4748, 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. ... View more

@catokitty wrote: Keeping positive is for me the hardest thing of all and moving on is an ongoing process.   I have got back to most of my normal activities and am doing my best to just live in the present and not stress about the future, enjoying each day.  I write down three positive things every day and I find this helpful.  It's great news that your radiotherapy treatment has been successful.  Good luck with next week's appointment xx s@catokitty wrote: Keeping positive is for me the hardest thing of all and moving on is an ongoing process.   I have got back to most of my normal activities and am doing my best to just live in the present and not stress about the future, enjoying each day.  I write down three positive things every day and I find this helpful.  It's great news that your radiotherapy treatment has been successful.  Good luck with next week's appointment 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.     ... View more

@nicky08 wrote: Hi Jennie60 Sorry to hear you are feeling so down this morning. Sometimes reading about other people’s secondary’journey’ isn’t helpful, sometimes it is. Unfortunately due to the nature of this forum you will be confronted with more stories like this than you would in the real world. I think also after the initial shock of finding out you have secondaries you start to cope with it all once a treatment plan is in place but then the reality of the situation can also hit you as it sounds like has happened to you. It’s completely normal to feel like this after all we’ve all been dealt a rubbish hand and we are entitled to feel sorry for ourselves! However there really are lots of treatments and daunting though some of them see we do seem to cope with them. I have now been living with bone mets for 12 years, the last 6 of those with liver mets as well and my main way of coping is to live for the moment. Don’t think of the what ifs, grasp each day and enjoy it, give yourself a mini treat or plan something however small to look forward to. Everyone’s own story is different from the next persons with this disease so don’t think that just because someone else’s situation is going one way that yours will have to. That is something I have definitely learnt over the last 12 years!  I hope this might help you. Try and pick yourself up today and plan something nice with your family over the weekend. I hope you feel more positive soon. Nicky x Dear Nicky I am finding myself in similar position.  Diagnosed with secondary in T-9 Vertebra only this last December.  I was hopeful that SBRT could be given to cure this however because of spinal cord compression had to head for conventional radiotherapy as an emergency.  Should say my primary was March 2015 - stage 1.  Had surgery, chemo and radio.  Was almost at my 5 year bench mark. I feel i am mourning the loss of my stage 1 and that is it for me.  Learning that there are people like you with 12 year survival lifts me. Treatment now is swap from Tamoxifen to Letrozole which i have already started and Monday i will commence Ibrance 125mg with injections of Denusomab every 3 months to strengthen bones.  I am hoping to restart work early next month but concerned i will not be emotionally fit, especially that i work as a medical secretary and have to deal with sick people.  The uncertainty of how Ibrance is going to affect me also concerns me.  Have you taken Ibrance yourself? ... View more

@Daylightdancer666 wrote: 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    Xxx May i ask, are you saying your crushed vertebrae are as a result of previous radiotherapy to back?   ... View more

@catokitty wrote: 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? ... View more

@catokitty wrote: 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?   thanks ... View more

@Gillyflower wrote: Thanks 4748       I'm glad to hear things are moving along for you a bit now as well and that you're getting more information.  It feels like hanging off the edge of a cliff until you start being able to piece together the bigger picture doesn't it?!     I've not had the radiotherapy to spine explained to me in detail yet so unsure what the aim is but presumably to try and get rid of the bugger cells they've found dotted around.  I'm being followed up as an outpatient so I am probably going to be waiting for a couple more weeks before I know anything more.     @Gillyflower wrote: Thanks 4748       I'm glad to hear things are moving along for you a bit now as well and that you're getting more information.  It feels like hanging off the edge of a cliff until you start being able to piece together the bigger picture doesn't it?!     I've not had the radiotherapy to spine explained to me in detail yet so unsure what the aim is but presumably to try and get rid of the bugger cells they've found dotted around.  I'm being followed up as an outpatient so I am probably going to be waiting for a couple more weeks before I know anything more.   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.     ... View more

@Gillyflower wrote: 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? ... View more

@LYNDYLOO wrote: Hi Kerenza Sorry you are in so much pain. Hope the hospital can get it sorted. Least you will know on Tuesday what they intend to do about it.  Just wondering did the hospital do a CT scan and bone scan when you were first diagnosed with breast cancer 4 years ago?  Good luck for Tuesday.  Linda  Hi Lyndloo and others in forum no  did not have CT scan performed nor bone scan at initial diagnosis 4 years ago.  I did not have lymph node involvement.  I had surgery x2, chemo, radio and on Tamoxifen.   Today I underwent 6th session of radiotherapy plus I had PET results given.  PET shows no other lesions.  Only lesion is that On T-9 which is been targeted with Radiotherapy.  Firstly radiotherapy to release spinal compression and then to eradicate.  As pleased as I can be with PET results I am concerned that radiotherapy will no eradicate lesion completely.  I will be seeing Radio Oncologist on Wednesday and will be asking him loads of questions. ... View more

@Gillyflower wrote: Hi all!   I've just joined the bone mets club, so to speak. I've already browsed through a fair few posts on this massive thread, which I have to say are utterly fantastic. There is an overwhelming positive vibe to most of the discussions here and it makes me so happy to know what a wonderful community of people are here 🥰    Quick intro and background for me, as I have a couple of questions about bone mets:   I was diagnosed Septmember 2018 at the age of 39. ER+ in left breast, quite a big tumour (over 5cm) but a Grade 1 growth. Full raft of 6 chemo cycles, mastectomy of left breast, lymph node removal and 15 sessions of rads. There was some concern at the time that there was an unknown lesion at C7 in my spine, however there was no change to this before or after treatment so Onc said we don't know what it is but right now, it doesn't seem to be cancer that's spread.   Roll forward to now, 8 months after finishing treatment. Back at work full time, started to get back pains, assumed it was work related (desk job). Physio saw me a few times then referred me for MRI.   Got the MRI results yesterday - told there's been a "vertebral body collapse with total marrow replacement" at C7, high risk of cord compression, evidence of new "metastic deposits" in T4, T5 and T10, L1, L4 and left iliac bone.   This is quite scary stuff for me to read (particularly as I don't understand how big or small all these deposits are and I don't know what some of the lingo means. I challenged the Onc today to ask how they can be absolutely 100% sure its bone mets just from looking at an MRI.   Anyway the bizarre part of all this is I have been feeling well and fine, the back pain went after a 2 week rest at work and lots of lovely walking, no pain in my neck, no symptoms whatsoever. Has anyone else had a similar experience?   I think because I still feel all "new" to this and having only just stepped off the treatment rollercoaster, I wanted to know if other people had experienced a similar timeframe before going from primary to bone mets?   I also just mainly wanted to waffle out of fear (thank you so much in advance for reading). Still sat in hospital and waiting for further scans and another meeting with Onc to determine where the disease is at and what comes next. Thanks to everyone who has shared your experiences on here, its been a huge comfort to me 😊   Sending love and hugs to all xxx @Gillyflower wrote: Hi all!   I've just joined the bone mets club, so to speak. I've already browsed through a fair few posts on this massive thread, which I have to say are utterly fantastic. There is an overwhelming positive vibe to most of the discussions here and it makes me so happy to know what a wonderful community of people are here 🥰    Quick intro and background for me, as I have a couple of questions about bone mets:   I was diagnosed Septmember 2018 at the age of 39. ER+ in left breast, quite a big tumour (over 5cm) but a Grade 1 growth. Full raft of 6 chemo cycles, mastectomy of left breast, lymph node removal and 15 sessions of rads. There was some concern at the time that there was an unknown lesion at C7 in my spine, however there was no change to this before or after treatment so Onc said we don't know what it is but right now, it doesn't seem to be cancer that's spread.   Roll forward to now, 8 months after finishing treatment. Back at work full time, started to get back pains, assumed it was work related (desk job). Physio saw me a few times then referred me for MRI.   Got the MRI results yesterday - told there's been a "vertebral body collapse with total marrow replacement" at C7, high risk of cord compression, evidence of new "metastic deposits" in T4, T5 and T10, L1, L4 and left iliac bone.   This is quite scary stuff for me to read (particularly as I don't understand how big or small all these deposits are and I don't know what some of the lingo means. I challenged the Onc today to ask how they can be absolutely 100% sure its bone mets just from looking at an MRI.   Anyway the bizarre part of all this is I have been feeling well and fine, the back pain went after a 2 week rest at work and lots of lovely walking, no pain in my neck, no symptoms whatsoever. Has anyone else had a similar experience?   I think because I still feel all "new" to this and having only just stepped off the treatment rollercoaster, I wanted to know if other people had experienced a similar timeframe before going from primary to bone mets?   I also just mainly wanted to waffle out of fear (thank you so much in advance for reading). Still sat in hospital and waiting for further scans and another meeting with Onc to determine where the disease is at and what comes next. Thanks to everyone who has shared your experiences on here, its been a huge comfort to me 😊   Sending love and hugs to all xxx Hi Gilly   i was diagnosed with grade 3 stage 1 invasive Ductal carcinoma back in March 2015.  I had surgeryx2 and sentinel lymph node testing. All was clear.  I received x4 sessions of EC chemotherapy followed by 25 sessions of radio and no way on Tamoxifen.   End of November I sneezed at work and pulled my back on the left hand side.  I was very sore for a few days and struggled getting up from sofa.  Pain was relieved eventually by analgesic and muscle relaxants. However, I found that on my middle right hand side of back there was unrelated pain.  I took further analgesic for 3.5 weeks and also went to physio.  I work as a medical secretary at our local hospital and spoke with the Pain Consultant about this very weirded pain that radiates to under my ribs.  He sent me for an urgent MRI, I thought it was an herniated disc.  2 days later, on the 27 Dec he knocked on my door at home as he is also a good friend and gave me the news that on the T-9 I have bc mets.  This I sent a horrible time for us and for all of us in this forum.  I am now undergoing 10 urgent sessions (6left) of radiotherapy as spinal cord was suffering compression.  I do not know what is next.  Radio oncologist will present case at MDT and decide follow-up plan.     ... View more

@raraJ75 wrote: Hi I was diagnosed de novo in September  - so double whammy!  For me it has been 4 years 8 months since early stage diagnosis and feel as if my life has crumbled.  I am awaiting PET scan, results which i am so anxious about and still have another 8 radiotherapy sessions to go.  The pain is the same, in fact maybe more of a burning feeling pulling round my ribs.  I just want to live many more years. ... View more

@raraJ75 wrote: Hi.  I have rads to my L3 vertebrae. I had 5 sessions although I had had most of the actual L3 removed via surgery.   I think the rads helped a bit although the surgery made the most difference to my pain levels. The pain was worse towards the end and just after but then did get better. My bowels were a bit upset too but as yours is a bit higher that may not be the case for you.  I think some of the extra pain came from just getting in and off the bed/lying still etc.  Were you diagnosed with this long after your primary?   ... View more