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Bone mets - please join in

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Re: Bone mets - please join in

You’re very welcome. Yes, it’s Unicorn Grocery! It takes me about an hour to get there but I go every week, initially it was for my fruit and vegetables but I buy all sorts there now, I love the place! Some things they sell aren’t organic but all the fruit and veg are. It’s usually on the top row near the fresh chillies and garlic. 

I’ve just looked on fb (btw you’re not alone I only joined after my diagnosis and don’t do all the friends stuff!), it’s typical of anything to do with supplements, some say their Oncologist advised against it, others that their Oncologist advised they take it! Seems a bit like Soya and linseed, some say to avoid linseed yet all the research I’ve read is strongly in favour of adding it. I did read one interesting comment which said, all the research now points to eliminating processed sugar, yet many are happy to eat that! While I do take supplements if I can add things in food form, rather than as a supplement, I do. Hope things get sorted for you soon... Kate xx

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Yes I do live in the area (well 20 minutes away) is it Unicorn Grocery? I’ll nip in next week sometime.

Thanks for all the info Kate, much appreciated.

hugs Janette xx

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Janette, I’ll take a look later and see if I can see anything. There are a lot of people with various illnesses, including cancer, in that group who take it. If you live in the area and don’t just go to the Christie for your treatment I’d go to Unicorn and buy fresh organic turmeric (they also have the powder) and add it to your cooking, you can cut it up for casseroles etc or just grate it into things like porridge, I don’t find it alters the taste but it does stain things orange! I wouldn’t have a clue about the cost of an MRI, I know someone who paid around £800-900 twenty years ago for a CT! Kate xx

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Thanks Kate, I think I’m the only person in the world who’s not on Facebook!! Lol really do need to get in the modern world, I think I’ll have to get my daughter to get me on it.

 I got my appt today for the liver MRI, 3rd February!!! Hubby has been on the phone to the Christie (where I’m treated) today to see about getting it done private, just waiting for a call back although I feel it’s going to be very expensive!

hugs Janette xx

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Hi Janette, I don’t take capsules, did do when I went to America on holiday, but I do add a lot of turmeric when I cook, also to juices and smoothies, and I’ve been doing so for about 4 years now. I haven’t read anything about not taking Turmeric with Letrozole, have read something about taking it with Tamoxifen, did say it was still fine for culinary use. If you’re on Facebook there’s a really good group called Turmeric Support Group, the admins are really keyed up on all things Turmeric related. Kate xx

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Hi ladies, just a quick question, dose anyone take turmeric caps or know anything about them?? 
I’ve been taking for around 3 months but have just been reading that caution should be taken with hormonal conditions as it could make hormone sensitive conditions worse!! 
hugs Janette x

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@4748 wrote:

@MaggieB wrote:

Hello,

So sorry you received such  dreadful news, at this time of year especially. But you've come to the right place, so many lovely people here with positive approaches and experiences, even though the diagnosis is awful. 

If it's just in your bones, once you have radiotherapy or whatever is needed to get the pain under control you can receive bone strengthening and other treatments to stabilise the cancer and strengthen your bones.

We are all different with our diagnoses and response to treatment, but I  found out I had secondaries in my vertebrae (T9 & 10) two and a half years ago and one was actually broken.   Like you I had dreadful pain extending round to the ribs. But now I do aerobics, weekly shopping, walk loads and all the rest.  "Just don't do star jumps" said the  physio!

Good luck with radiotherapy and the PET scan, keep us posted and may you enjoy a good new year.

Big hugs

MaggieB


Many thanks for your encouraging words.  Started radio low dose radio today.  The pain is just as you describe it.  I cannot sit for more than 10 minutes without having increasing pain at L-9 right hand side and that awful knot under right rib.  I cannot wait to be able to sit up in car, having to lie back all the way.  reached this point of pain in the last 3.5 weeks.


MaggieB, forgot to ask, did you have radiotherapy or surgery to those vertebrae and how long before you returned to normal with regards to pain?  It just feels it is never going to get better. Today I had my PET scan done and I am very anxious about results.

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Hey all 

How we all? Im full of Cold slowly going but think my cough may linger. 

 

Done not much last few days just sleep meds eat

 

Im preparing myself for next week in which I have blood test Monday Tuesday ct planninf and radiotherapy treatment on back Wednesday if nt bloods are alright back into hospital I go to get this denaasaub injection Thursday afteenoon ive got cofee date and get mt brows. The weekene nt sister neohew hubbt coning uo depending how I feel a meal out because my birthday week aftee hoping radiotherapy doesn't wipe ne out too much xxd

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Thank you Kate, good luck with your scan.

hugs Janette xx

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Hi Janette,

Just wanted to say I’m thinking about you. I have a scan coming up and can’t help thinking my luck will soon be running out, as I’m well into my 5th year post diagnosis now and, as I was dx straight to stage 4, wonder how long “it” had been lurking! 

Hope you get an appointment sooner rather than later. Sending you a hug...

Kate xx

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Hi Nicky, thank you so much for your reply.

Probably sounds pathetic but I literally feel like I’m in a dream!! I know I have been extremely lucky to have been stable for 6 years with easy treatment and I knew that at some point the nasty beggers would raise their ugly heads again but I still feel like I’ve been slapped in the face! 
The worst thing is this waiting around for my MRI I’ve been on the phone this morning and there are no appts at all through January so I asked if I could go on a cancellation list and was told there’s also a cue on that so it’s hanging around now for at least 6-8 weeks before I know anything else!!!! I just to know whats going on and get started on any new treatment.

sorry for the rambling, just feeling so stressed out at the moment!

hugs Janette xx

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Hi Janette - and big hugs to you.

I know what it feels like to get a diagnosis of another site/organ after years of bone mets.  You get lulled into a false sense of security don't you.  I had about 5 years on Anastrozole after my bone mets were dx and no other organ involvement and stable bone disease for pretty much all those years.  After an unrelated pain in my hip I had a CT which showed up liver mets - and an increase in the bone mets.  I was aware that it is unlikely to 'only' have bone mets and that at some point they might spread but I had hoped it wouldn't happen to me.

Anyway I went on to Capecitabine which worked for about 18 months (this was back in 2013) and have been on various other treatments since then - as we all are in one form or another.  My team tends to swap between a hormone treatment and chemo (which knocks the uggers back a bit more aggressively) which has worked successfully since. 

You could ask for a liver biopsy but these are not always possible due to the siting of the lesions, this would determine whether the receptor status of your BC has changed however it sounds like it's probably the same as the bone mets, it's just got clever and got around the barriers that the Letrozole had put up.

What will be a shock, which it was to me, was suddenly to be back so often at the hospital and back on the treadmill.  I had had 5 years of just picking up my hormone treatments from my local chemist with the odd 3 monthly or 6 monthly oncology appointment so I found it very unnerving.  However if you are put onto another hormonal you may not need to be going there as much as I was when I was on capecitabine.

Good luck and feel free to PM me if you want, I'm also hormone positive, HER2 negative as you are so have been through a lot of related treatments!

Nicky x

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Hi ladies, I’ve not been on the forum for a while, but yesterday I got a call from the hospital to go and see onc regarding my CT two weeks ago, they have found a few “spots/nodules” on my liver, (been stable for almost 6 years with bone mets) onc has requested an urgent MRI to look closer then they will take it from there.......roll on the waiting game!!!!! 
Just wondering if anyone has any info/ experience on this, she said it will be a change in treatment ( been on letrozole for over 5 years) I don’t really research treatments I kind of like to deal with things as and when needed! 
hugs Janette x

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I find most difficult bit is pain i was diagnosed in june  but was having back pain before that. Ice had radiotherapy various parts of body and irs worked wonders.im getting more next week for some pain relief and put forward for mri scan due maybe surgery which heard can be very successful xxxxx

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@MaggieB wrote:

Hello,

So sorry you received such  dreadful news, at this time of year especially. But you've come to the right place, so many lovely people here with positive approaches and experiences, even though the diagnosis is awful. 

If it's just in your bones, once you have radiotherapy or whatever is needed to get the pain under control you can receive bone strengthening and other treatments to stabilise the cancer and strengthen your bones.

We are all different with our diagnoses and response to treatment, but I  found out I had secondaries in my vertebrae (T9 & 10) two and a half years ago and one was actually broken.   Like you I had dreadful pain extending round to the ribs. But now I do aerobics, weekly shopping, walk loads and all the rest.  "Just don't do star jumps" said the  physio!

Good luck with radiotherapy and the PET scan, keep us posted and may you enjoy a good new year.

Big hugs

MaggieB


Many thanks for your encouraging words.  Started radio low dose radio today.  The pain is just as you describe it.  I cannot sit for more than 10 minutes without having increasing pain at L-9 right hand side and that awful knot under right rib.  I cannot wait to be able to sit up in car, having to lie back all the way.  reached this point of pain in the last 3.5 weeks.

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Re: Bone mets - please join in

Hello,

So sorry you received such  dreadful news, at this time of year especially. But you've come to the right place, so many lovely people here with positive approaches and experiences, even though the diagnosis is awful. 

If it's just in your bones, once you have radiotherapy or whatever is needed to get the pain under control you can receive bone strengthening and other treatments to stabilise the cancer and strengthen your bones.

We are all different with our diagnoses and response to treatment, but I  found out I had secondaries in my vertebrae (T9 & 10) two and a half years ago and one was actually broken.   Like you I had dreadful pain extending round to the ribs. But now I do aerobics, weekly shopping, walk loads and all the rest.  "Just don't do star jumps" said the  physio!

Good luck with radiotherapy and the PET scan, keep us posted and may you enjoy a good new year.

Big hugs

MaggieB

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@Daylightdancer666 wrote:

Hey funny face im eewkkt hoping the spinal surgeon will carry it out sick of. Pain im in just hsd second dose of oral.morphine kd the day before my shower as that triggers it along witj every otner meds I'm like a rattle like fulk or cold xxx


Hi all

Diagnosed with secondary bc on T-9 vertebrae only 6 days ago.  In pain which radiates to under ribs.  Starting radio today and will be having PET tomorrow.  Really scared of dying, is this it?  Initial diagnosis almost 5 years ago.  I need encouragement.

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Hey funny face im eewkkt hoping the spinal surgeon will carry it out sick of. Pain im in just hsd second dose of oral.morphine kd the day before my shower as that triggers it along witj every otner meds I'm like a rattle like fulk or cold xxx

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I did so well with that surgery. It was two years ago. For me it was the best thing ever. I hope if you have it that it works as well for you! Best wishes!  It's called kyphoplasty! Just noticed my post from before changed the name of it. Good luck! FF

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Ooh glad you popped this uo lynsey loo 

 

Hey hey funny face i dinslkt gor referred to medical oncologist who i saw on xmas eve hsd referred me to radiotherapy as she thinks its skm mechanical regarding crushed vertebrae.

 

So she emailed spinal surgon who hss requested up to date mri she has requested ss urgent as my pain since last speaking to you got hell worse ive been on steriods on xmas day km taking more oral morphine but she mentioned procedure you mentioned sound promising how you been since xxxx

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Bumping up as slipping down page

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Daylightdancer, I don't know if you know, but I live in the states. My operation was same day surgery.They did plan on me staying bc of my lung mets. They came in after surgery and let me go home. I had no pain when I left! FF

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Hiya 

Ive had mri before depending on results with ct they may refer me to have one. 

How did your procedure go were you just day case 

Xxx

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Daylightdancer, Get an MRI of your back. My vertebrate broke at T-11 & T-12 after having hiccups for an hour. They had to pin it and cement it. Called kyphoplasty. Pain free afterwards. FF

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I know that feeling my femur and hip got painful ages ago got point barely walk mentioned radiologist ans she said I had lump of cancer there so I got radiotherapy and touch wood it hasn't returned I'm starting to worry my crushed vertebrae is csncee with how much pain I'm in xxx

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Hi Cazzy , thanks I yes really devastating losing my lovely mum ! , I’ve been on an Anastrozole for last 5 years and has worked well but this constant pain in my lower half is making me feel that things have changed ! You can almost put the whole cancer thing in another box until you get a pain flare up and all the worrying thoughts just get brought to the front of your mind !! X

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Hi 

Helen sorry to here about your mum what medication you use I find my knee been painful mostly from lethzole.

Love and hugs 

Cazzy x

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Hi all 

been a while since I posted ,I’ve had bone mets since 2012 , with very no real progression over the last 5 years !! However for last 3 weeks had groin , hip and knee pain pretty much constantly, really worried that I have progression,has any one else had any experience of this ? Hoping its rheumatism but probably not , been stressful 6 weeks as lost my mum and now thinking it’s brought this to the surface ! 
Helen x

 

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Hello. 

Ive not experienced treatment you are on but hope side effects don't get any worse for you 

 

Unfortunately upping my morphine was not working. So I rang my macmillan hadn't spoken to her for while so I ended pouring my heart out to her so it was decided to up by pre gablin to 250mg twice day I needed a review at gps about my anti depressants as I'm struggling she referring me to physcologjst.

Anyway went to gp she upped my anti depressants was very reluctant to give my lorazpam which I have when I'm anxious because I shake etc I don't have it often considering Im nearly finished box I got when discharged in June which irritated me slightly but I gotta be careful with the meds I'm on also mentioned cramp in my leg and thought was due low calcium and as there long time between oncologist appointment wanted blood test but she said cknd back next week and I said is there anything can do about it and she mentioned well your calcium low and eat yoghurts yet I know you can get quinny so Cazzy not best pleased

 

Good news mum's operation went well and she's home

 

Xxx

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Hi all, I have started treatment with Docetaxol on 18.11.2019. So far I have been well apart from the past two days when I was feeling as if I had a flu. Today much better and will go outside for a small walk. Hope everyone is feeling warm and painless. I will be using also the cold cap which I find managable, so hopefully it will work. How many rounds of Docetaxol have you been having? I have been told that possible 6.

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Aye I'm in 32 the increase from 20 to 30ng seems helped no oral morphine been in bed lot today didn't sleep well got sleep. Half four

 

I agree it's just not pain physically it's emotionally as well everything adds up especially in my case when my mum got diagnosed two days ago with thyroid cancer which is crap and got. Welfare meeting tomorow at work as been off six months hoping. I sleep better tonight I've had lovely hot shower in clean pj's and. Just gonna eat remains of take away curry watch masterchef head to bed xxx

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I am sorry that both of you have got increasing pain, and yes it is very scary as the cancer journey is always associated with pain in suffering, but I would say that sometimes our pains are not definitely from the cancer itself. I know that this may not matter to you but for me it does as I know that combined with the cancer journey we are not getting any younger. Please, however do not suffer in silence, as your oncos about ways to decrease pain, try also natural anti inflamatary sources, do not give up to the panic, I know it is hard I am in the same boat too, I know that it is gradually going to sink, but we need to face the problem, accept it and go on trying to live as long and as well as we can. Do not know where you are based but from my experience CBD oil helps with pain and sleepless nights. 

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I've not yet had my scan due it end this month but me too my pain increasing I'm in 20ng zoromoroph twice daily had two lots of 4ml of oramorph so far today plus two lots of paracetamol as slept over was supposed be half eleven  second dose had ten to one.

 

I dunno if knee joint pain from lethrzole as they changed my brand or what but I know my crushed vertebrae been painful few days 

 

Xxx

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Bone pain. My latest scan showed nothing much changed but my pain is gradually increasing. I have a new pain in my right arm (xray showed a possible something, bone scan showed up nothing) onc has requested an mri on that arm. The sternum pain is also flaring up at the moment but I've had radiotherapy on it twice already so not sure what other options are left. I so much want to be pain free. I'm on 40mg Zomorph twice a day and recently been needing to take extra Oramorph during day and an extra 10mg of Zomorph before bed just to be comfortable. Any other suggestions that people have found helpful?

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Hi Nicky yes I have not posted for a very long time, I tend to stay away from the forum, as I hate letting everything connected to cancer get most of my time and attention. I work and this is something which distracts my attention and by feeling that I am ale to do it, I gain much confidence. I hope it will be like that for a longer period though...

Thanks for sharing your experience with me, I feel very reassured now once I see that someone found it manageable. I have started thinking of agreeing to the Docetaxol treatment as I am thinking this is not going to affect so much my quality of life. And after all if I cannot  bear it it could be changed to the "milder" dose or ...who knows....A decision should be made and I need to carry on somehow. I think I just lost my confidence and will to fight which I had 3 years ago when diagnosed. A lot of things have changed and it cannot be another way as I have entered the menopause and the disease progressed a little.. I will ask definitely about a second opinion and thanks a lot about the information you have provided. 

Hope everything goes well with you and you do not find making decisions so difficult like me. How many treatments have you undergone so far?

 

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Hi Avrelai, it’s been a long time since you posted on here, which is good thing for most of us!
Sorry to hear that you had a scary situation with Cape, I’d never heard of a cardiac spasm but I expect it’s put your oncologist in the mind of not continuing with it, even at a lower dose. In my experience oncologists may be experts in their chosen field but understandably are not experts in other linked fields such as cardiology despite them overlapping quite a bit. I also fully understand your dilemma about which treatment to start next and it’s always difficult when you, as the patient, are given the choice. I have been in a similar situation and it’s not easy weighing up the pros and cons of effectiveness of a particular treatment over another one against quality of life ie not ‘living’ at the hospital every week. I am expecting to have to make some similar decisions soon depending what my recent scan shows and even if not immediately it won’t be much further in the future. 
As to advice about the 2 chemos I have had docetaxel, back in 2014, and found it easier to cope with than the first chemo I ever had FEC, which is the worst by far. I hated being on steroids and the side effects you get from coming off them. Like one of the other ladies I did suffer from constipation but I think that’s the steroids. The first cycle gave me horrible nerve type pain but I didn’t get it on any other of the 6 cycles I had in total. I did loose my hair (again) but it did grow back after chemo was finished. I did find the cumulative effects of chemo affected my levels of fatigue but was able to go about doing general things in between cycles. My concern, as your is, about pacitaxel (which will be the next recommended chemo for me) is that you have it weekly and your life is ruled by blood tests and chemo visits. 
A couple of suggestions for you is an you get a second opinion, at a separate hospital/centre of excellence so you get a different view. Also, but this might be a bit of a long shot and depends where you live in relation to travel, can you get a referral to the cardio-oncology unit at The Brompton hospital in London? They specialise in heart related issues caused by cancer treatment and is an NHS run clinic. I have been under their care for 6 years now, initially with a lot of additional cardio care but more recently as an annual checkup.

Good luck with whatever treatment comes next and hoping it works well for you.

Nicky x

 

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Hi avrelia, 

 

Best to speak to your onc about it. Don't forget you can always stop and change treatments if it's not working for you, the choice is yours. 

Dont worry too much about it, just take it day by day. 

Best wishes xx

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Oh Channie I see now. I cannot immagine myself to go to the hospital every single week for chemo, my breastcare nurse explained to me yesterday that there is pratically almost no difference between the two drugs they have offered to me and  I only need to think in terms of time, as Docetaxol is going to be given every 3 weeks and Paclitaxel will be every week. However what I have been reading is a bit different as it appears that both of them are from the same family but with Docetaxol you are less likely to develop neuropathy, but hairloss might be permanent. Also according to some studies Docetaxel is delaying the progression more effectively.....I am still struggling to understand everything and also the fact they they have not offered to lower the dose of the Xeloda and see if it will be working. Is there anywhere I can go and speak to someone in person about all these, or I might even get more frustrated. My haed is a chaos. Sorry all that I am such a moaner these daysXXX

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Hi Avrelia, 

 

No, paclitaxel took me 5 months to complete. As you get a week off after 3 weeks of having it weekly. So it takes about a month for one cycle. I was suppose to have 3 more rounds of it, one more cycle, but I asked to stop it as couldn't endure anymore. I was off work the whole time for it due to the pain and fatigue. 

 

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Hi Avrelia.

I had Docetaxol with FEC 3 of each plus surgery and radiotherapy . Cold cap wasn't offered by my local hospital at the time though it is now. Regards side effects I was able to work all through my treatment so they can't have been that bad. 

Hugs xx

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Hi Kirky_68 I can see you have been through a lot, and I am sorry about your awful experience with losing your hair. Did you try the cold cap? I am really afraid of losing my hair permanently. Back in 2016 when i was on EC i lost all of it but it grew back a month after I finsihed and it was all fine. I am ok with SE if they are mild but I am not sure how will I cope if they are severe. I was also a bit surprised that my oncologist did not lower the dose of cape to see if it is going to work for me, not just rush to the next available treatment. I hope you are ok on your current one and you will have many more years to come. Were you only on Doxetaxol at that time or you used it as a combination with other medicines?

Channie thanks for sharing well done with Paclitaxol it seems that apart from neurophaty there are no major side effects I mean severe ones. You said you had 15 rounds of it does this mean that it was only for 15 weeks which is less than 4 months? 

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Hey hey 

Ive been in lot of. Pain with crushed vetbse lately it's annoying I'm. On paracetamol mst pre. Gablin had oral. Morphine so far today xxx

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Hi Avrelia

I had Docetaxol in 2013 as part of my treatment for primary bc.

It made me fatigued and constipated mainly as well as a metallic taste. I lost my hair and it never really grew back which broke my heart. 

I was diagnosed with secondaries 2015 lungs, liver and bones. I had Capecitabine for 2 years. Originally it gave me spasms like you but had the dose reduced to 60% and that was enough to keep me going for 2 years. 

In 2018 I had Paclitaxel 18 rounds every week. Main se were fatigue and neuropathy in left foot but not completely debilitating. 1st 12 were okay but the last 6 were a slog. Paclitaxel kept me stable for 12 months until very recently. I am now on Eribulin weekly.

I was very frightened about Pac after having such a hard time on Docetaxol but very glad I decided to do it. A year has been a precious gift that I am very grateful for. 

Everyone is different and your experience might be different to mine but you can always stop whenever you want. 

Good luck and big hugs from me xx

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Hi avrelia, 

Sorry to hear you're having a tough time, hugs to you. Treatment can be scary but we must plough on to fight the disease from getting any worse. Never give up any hope of being able to reduce or stabilise the nasty cells. 

I've had Paclitaxel, started Oct last year and finished in March this year. You have it every 3 weeks on then get a week break. For me the side effects weren't great at the start I had alot of bone pain, achy joints , was nauseous and was tired alot no energy whatsoever, was in bed mostly ,took painkillers, felt well on the first few days after having it probably because of the steroids then it kicks in. You do lose your hair but it grows back and mine started growing towards the end whilst I was still having it!  Your palate changes and sometimes things can taste metallic I use to love cold foods and this was during winter. But everyone reacts differently to drugs not everyone gets these side effects. And it may not affect you like it did me. I came through the other side of chemo after a few months and felt better towards the latter end I think your body becomes used to it. I had 15 rounds of it and then asked onc if I could come off it as it was so enduring towards the end I couldn't take much more. You can always ask to stop it. But the good news is it worked, and my cancer cells which are in the bones only stabilised and it did its job! All the pain and suffering was all worth it.

I'm now on a hormone medicine aromasin once a day and that is working well my last few scans and onc meetings have remained stable.  

I hope all goes well for you, let us know how u get on. 

 

 

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Hello all,

I have not been around as 2 treatments have failed I was in hospital and now I am back home faced with a dilema what to do with my next line of treatment. I have read some of the posts and I am glad that I can still see some names I have met here initially, may God bless you and keep you all safe. I apologize in advance for my sad and negative post.

I am having some tough moments this year, namely having to deal with progression from bone metastasis to increased bone metastasis and liver ones. In June I had to start Fulvestrant and Abemaciclib, which did not work at all, started Capecitabine in October the beginning and ended up in A and E with Coronary spasm. Now, as the oncologist says I have run out of chormonal treatments and milder treatments she is offering me 2 types of chemo to choose from Docetaxel or Paclitaxel. The first one she says will be given every 3 weeks and second every week. She has explained that the second one has less severe SE, and that is why it is prescribed to patients who are not so fit as I am. I am very very sacred I do not want to end up in hospital again I feel so well when I am not on any medication I do not have any pain and I do not want to pull the devils tail and start  suffering because of treatment not because of the illness. I know that my tumor markers are rising and my liver function is worsening according to the latest blood tests but I simply want to have a good balance between SE and treating the illness. I am so scared. Please anyone who have been through either of these chemos share what sides effect you had, did it work for you when did they notice any results.....I know that we are all different but I need to hear some stories in order to make up my mind. I just want some quality life, even if it is shorter than the SE one.

I know it is my decision I have read all the leaflets I have received about the side effects of both drugs but I need to hear real time stories probably, do not know. I am also concerned about losing my hair again and especially when I have read that with one of the drugs I can loose some if it for ever. Are there many such cases?I know this is not the most important thing but for me it matters a lot. I want to scream it is so so hard. I have not given up may be because I am so asymptomatic. I just want to delay the symptoms as much as I can! I want quality life. I do not want to stay in bed and wait for pains and aches and .....death.....Sorry for the negative post. I feel so alone........

Please if anyone has been recently on one of these treatments could you share your experiences? I am also a bit confused as the oncologist said that I might have both them in the future anyway so it seems that it is just a matter of choosing which one to start with. I thought that they are from the same family and they are excluding each other. Please tell me your opinions about that too. Thank you

Thank you allXXXX

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Re: Bone mets - please join in

Hi Rachel

 

I have been living with bone mets for nine and a half years now and am still here and doing ok Smiley Happy

 

Initially I  had CT  scans every 3 months and annual mammograms. Now my Onc says (like yours does) that mammo is not necessary as CT would spot things. I  had a lumpectomy/WLE so unlike you my primary was removed. I  think if I  still had my primary I'd want more reassurance and would be asking my Onc for mammo occasionally just to keep my mind/emotions under control (but that's just me).

 

After a while of being 'stable' my CTs moved to 6 monthly - there was a suggestion at one point that I move to annual CT but I wasn't happy with that and Onc continues to do them 6 monthly.

 

I've asked the question about arms and legs myself and the response I  got is that mets don't normally go to the 'long' bones. I know that this isn't actually true as I  know women who have bone mets in their legs/ankles. It would seem general practice thouh to only look at those areas if a problem arises. I do have a nuclear bone scan (different from bone density scan) every 2-3 years and that does normally deal with whole body and would show up 'hot spots'

 

Hope this  helps a little. Good luck with treatment x

 

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Re: Bone mets - please join in

Val

Your post is so inspirational to read and I pray myself and other people on this site that we can say the same thing in years to come.

 

I do have a question due to your years of experience and other members out there over scans with bone mets. I apologise if this has been covered at some point before........ But oh my there are so many posts I can't read through them all to check. 

 

I was diagnosed primarybreast cancer and bone secondaries to my manubrium (part of sternum) right pelvis and right humerous in one go out the blue last October. But my scans are every 4 months as a CT and my arms and legs are out of the scanner. So my question is how does anyone know if other areas of bone are effected if this is how I am imaged each time. Also what type of scans do other people have to keep an eye on this, plus do I or should I have yearly mamograms as when I brought this up with my consultant he said it would be picked up on my CT Scan (my primary is still in situ).

 

Any advice would be great as I find areas and hospitals seem to be different. 

Rachel xx

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Re: Bone mets - please join in

Maggie and all. October is my favorite because I love the colorful leaves, pumpkins, gourds, and fall flowers. I like sweatshirt and jeans weather. Although today it was 95° F, here. I cleaned and finally got in the attic and got out my Halloween and Fall decorations. I was supposed to do it a couple of weeks ago and didn't get it accomplished.Cleaned out all my flower pots with annuals in them, brought in my herbs and went shopping for pumpkins, gourds and mums (fall flowers). All finished. 

 

I took pumpkins, gourds,and flowers to my grand daughter. She will be 22 months soon and doesn't call me anything. One day I got her to call me nana and then she went and got a banana. Today when I stopped I said grandmom brought you a pumpkin, gourds and flowers and she said Nana and touched and wanted picked up. I guess I'm officially Nana! F2F

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Re: Bone mets - please join in

Hi ff

Is September /October your favourite month for a reason or because it's a lovely month with fall just starting? Woke up inspired by your words and had a great  walk in the sunshine with a good friend . You're right ... we won't be dictated to!! 

Ps hope the nails are getting better.

Maggie

xx

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Re: Bone mets - please join in

Maggie, I'm sorry you had one of those awful nights!! Believe me I still have them too! That's when I do my best cleaning! Lol, I'm upset and I throw things away better then! I refuse to let this blasted disease to dictate who I am. Smile and have a better day!  It's my favorite month so I have reason to smile! FF