Bone mets - please join in

[Carolyn52]

Thanks Sue for replying about the femur pin and Im sorry that it did not work for you and you have had to have more surgery. Its tough dealing with all this but reading through some of the threads on the board there are some very brave people here ........Im  such a wimp and I am very confused as I can feel the pull of the pins from the nail although it was eight weeks ago now and of course the pain from  the cancer in  the hip and pelvis is also  still there !!!  It seems to be a rare treatment as you were the only reply and the Surgeon said that it would be back to full strength now the pin was in and to give it some welly !!  Im not so sure though !! 

Im seeing my Oncologist on Tuesday to start the denosumab injection but only after my blood test to make sure all is well.

Im a bit confused about " markers" I keep reading about on the board ........do they show on blood tests or scans ?  

Carolyn xxxxxxxxxxxxxxx

[Marie123]

Happy hols Lynn xxxxxx M

[nicky08]

Have a fab time Lynn, you deserve it! I'm sure it will be warmer than the UK after all it's freezing here!

Hi all boney, and other mets, ladies. I've been reading but not contributing much at the moment, a very busy start to the year for me which has meant I'm not on my tablet/PC as much at the moment. Hope everyone is doing well on their treatments and the newbies are getting some answers to their questions, both on here but more importantly at their oncology unit.

Nicky x

[Lynnq]

thank you

xx

[Marirose]

Enjoy your holiday no matter what the weather is like xxx

[Lynnq]

Hi FF. I have packed some warmer clothes. At the moment I am at the airport hotel in Manchester. Husband & I just been for a walk - it is very cold, but at least it is dry and bright. Can't be as cold as this in Florida.....

[funnyface]

Lynne....Florida is having a cold spell....hope you packed a jacket!

[scoobiesue]

Hi ,I have had my femur pinned. I had a fall and the femur snapped. The bone was so damaged that the pins snapped 9 months after the operation. Last week I had a full hip replacement with a long pin. Like you I felt that no other person was available to share my experience. I am happy to help with any questions you may have. Wishing you and all of our ladies well Sue

[rosie53]

Hi ladies, hope you are all keeping well. 

Chocolates, sorry to hear you have been struggling with pain, it really brings you down doesn't it.

Oh Lynn, florida holiday how exciting,  hope you have a fantastic time. 

Sorry Carolyn I have no information or knowledge on your question. 

Well ladies iv gone and done it......We've bought a puppy 🐶 a little cavachon, I'm going to collect her on Thursday, must admit I'm a little nervous about it but also excited, not had a dog since I was a child.

Hugs Janette xxxx  

[Carolyn52]

Just reading these threads and I wondered if anyone had had a nail put into their femur to stop it breaking through the cancer damage in hip and pelvis etc. 

Even in hospital back in November when I had this op - there was no one else with similar and so I feel a little bit out on a limb. Obviously I have googled this but would like to hear from anyone else that has actually had the same. 

I take letrozole and adcal daily and next week start denosumab injections for my bones.   

I had primary breast cancer in 2004 and after 11 years its come back with vengeance now and Im still trying to get to grips with all this !!!

[Chocolates]

Lynn, have the most amazing holiday.  Look forward to hearing all about it on your return.  You so deserve it xx

Law, I'm sorry your mum is having such a difficult time.  I think the very little and often with the food might be the way to go - with a load of patience from you.  I really hope things pick up soon xx

We had a slight dusting of snow on Saturday but other than that just jolly cold.  I'm struggling a bit with a bad back - I think it's finally on the mend but has been very painful.  The morning is the worse - getting out of bed.  Once I'm up it eases over the day but first thing is unbearable.  Have to admit to shedding a few tears it's been that painful.  Told my team and had bloods done this morning and seeing onc Thursday just to double check.  If no better I bet it's the dreaded scan.  Haven't had one for well over a year and want to keep it that way at the moment.

anyway huge hugs to you all.

hxxxx

[redridinghood]

Law,

So sorry your mum is having difficulty at the moment. Janette mentioned the Royal Marsden Cookbook. There is also advice on their website: https://www.royalmarsden.nhs.uk/your-care/living-and-beyond-cancer/eating-well. At the bottom you can click on the link to the Eating Well leaflet, or try this link: https://www.royalmarsden.nhs.uk/sites/default/files/files_trust/eating-well.pdf. It is quite long and detailed, but informative. Keep going to the end! There is a section on having a sore mouth. Maybe the secret is a little.....even a very little........and often. Anyway, try the Marsden stuff. Love to your mum.

mo      xxx

PS Google the actual cookbook. There are good reviews, and it is available through amazon........of course!

[rosie53]

Hi law, sorry to hear your mum is struggling at the moment, Julie is right there are lots of different protein/build up drinks to try also I have the Marsden Cancer Cookbook, it has lots of different recepies to try aimed at different cancers and treatments you are having, it's really useful and informative 

Take care Janette xxxx 

[JulieD]

Hi Law,

Sorry to hear your Mum is having a rough time. There are different types of 'build-up' drinks maybe you could ask yor GP or hospital if you can try a different type to see if your mum likes them any better. You may have heard of Wiltshire Farm Foods, they deliver froen ready meals, hey do a range of 'soft' meals for those with eating/swallowing problems so might be worth looking at. I think I saw something on the Macmillan site about eating gor those with mouth/throayt cancer which might also give some ideas which could help your mum at the moment.

Sending you a hug too, it's hard for loved ones xx

[Law36]

Hi my mum has had mets in her spine , ribs, arm , lung and has been on denosumab for around 18 months . She then noticed an ulcer in her mouth around 4 months ago but was assured it was nothing to worry about ... This ulcer has grown and making eating very painful ... She had mri scan snd unfortunately have said that it is cancer in her mouth ...:-( she is now in 3 rd cycle of cape and starts radium to her mouth on the 26 Jan ... Finding It very hard at the min all round and having problem with eating Ect which she is outing Weght too:-( getting really worried and trying to stay positive ... She has been prescribed protein shakes but she doesn't like them and making her gag ... Does anyone know anything else she could try or other drinks as she needs to keep eating for strength but says she can't eat as so painful in her mouth xxx

[Lynnq]

Hi Marirose.....we are actually closer to Doncaster than Leeds...   Between Goole and Selby.......haven't seen any snow at all but we had a very hard frost.

off to Florida on Wednesday, can't wait to see a bit of sunshine.   Just husband and me, for a relaxing break.

hope that you have a lovely time on your spa break tomorrow

xx

[scratch]

Hi I have Reiki.and reflexology.both are fantastic.grounds the body and mind for short time.some people don't believe in reflexology when cancer .check with your oncologist or nurse...a lot of churches do healing for a donation.its the same as Reiki..i pay about 25pound for hour...sometimes go to a local church..its all about universal healing.i believe in it..give it a try...xx

[julzd]

Hi have any of you had reiki treatment I had a go last week it was relaxing I was thinking of acupuncture next anyone did this ? X x

[Marirose]

Hi all 

Mo thankyou for your post on ONJ I must admit I didn't know what it meant it was certainly interesting. Wouldn't it be nice to have an abreviation thread so that we could refer to it I do get confused at times.

Lynn I am suprised you have not had the snow we have and we are not far away from you alright it is almost gone now I am near Doncaster. I hope you have a lovely holiday.

I am going to a spa treat tomorrow from one of my son's, Hubby and I get a spa treat and then evening meal and bed and breakfast. 

Love to all xxx

[redridinghood]

Enjoy your holiday, Lynnq! Hope it is somewhere nice and warm. Apart from being cold, Jan & Feb are so depressing......dull and drab. Roll on March!

mo

[Lynnq]

Thank you Mo
I do know that bone strengtheners can cause problems with jaw, teeth etc and was told to tell my dentist that I was on Zometa, just didn't know that it had a name!! Now that they have stopped my Zometa won't need to worry about it.

Like you I have picked up lots of info from these threads.

No snow here yet but very cold....

We are going on holiday on Wednesday so hoping it stays away until our son has dropped us off at Manchester airport and got himself home ... Back across the M62 to Leeds

[redridinghood]

Lynnq,

ONJ is osteonecrosis of the jaw. Bone strengtheners are meant to do that......strengthen the bone. But they seem to be associated with this problem, but only in the jaw. Any damaged or upset bone can have trouble healing on these strengthening drugs......... Bone necrosis is when the bone will never heal. (Actually I have a friend with necrosis in her ankle bones after falling off her bike. The bone won't ever heal inside. Rare.) The trouble with the jaw is associated with teeth......they can suffer decay, or infections, or you may need root canal work or, worst of all, tooth removal. ONJ is not inevitable, but a small risk. So.......if you need an extraction you would be advised to come off the drug for a few months first, then stay off it another few months after dental work, because of the risk of ONJ. My oncology team have said that I could only have an extraction in the hospital, not with my dentist, because of this risk.

I have read on these threads of people on bone drugs who have successfully had extractions, with the precautions above, and no problems. It is a risk. I am on denosumab and had to have teeth checked before going on it. And I would have to come off it for major dental work. Nothing, so far. Having said this I have met someone at my BCC secondary meetings who has suffered ONJ and lost teeth because of it.

I am not an expert! But I have picked things up on threads and talking to my dentist, because I am on denosumab. It applies to bisphosphonates too. It is not really understood. No harm in knowing about it though.

Snow outside. Ugh. But thawing.

mo

[Lynnq]

Hi everyone, thanks for your input regarding the Zometa.
I have not come across ONJ before - I don't think - what does it mean?

[Marirose]

Hi everyone

Thankyou for your post Dawn I always enjoy your posts I find them interesting and informative. I too have a electric scooter which I enjoy being able to go out with the family when walking before I could never take part and now it gives me a little independance. 

The discussion about bone strenghening I find interesting I am on Denosumab been on it 3 years now I often wonder how helpful is it.

Love to you all xxx

[Tournesol]

Hi, hope everyone is keeping as well as possible (and as warm as possible at the moment!). I thought I'd add to the bisphoshonates discussion. I've been on them for nearly 6 years, and it's a constant background worry as to if and when ONJ will occur... I've also heard of people reducing the frequency of the treatments after a few years, but that always seems to relate to Zometa or other IV or injected bisphosphonates, and I'm actually on the tablets. I've asked my oncologist about it and been told that NICE guidance is that you stay on them unless you no longer have bone mets (in my dreams...) or you have other more urgent problems. So what I end up doing is taking a break for a few weeks or months every so often, especially if I'm having any dental treatment, and then going back on them when I get increased pain or get worried about not taking them. It's really not ideal though! Dawn, you may well be right about them only looking at the short term need and I guess there's no commercial advantage at the moment in anybody looking into the long term effects so I don't really see us getting any help with these decisions. But if anyone does have any further guidance from their onc, study results etc I'd be really interested to hear it.

Best wishes,

Tournesol x

[dawnhc]

Hi all - sorry that I haven't been posting for ages although like many I do try to keep up with new posts - especially this thread. I think we would all be amazed at how many people have posted to it since finty first started it over 5 years ago. I remember in its early days counting up and then giving up after I got to over 100! 

Marirose like you I have limited use in my legs (though not through MS - that must be really hard for you coping with 2 such nasty diseases :(. Mine has been due to the extensive bone mets I have had since 2002 and the considerable damage it has done to my spine, hips, pelvis etc. A soft tumour managed to wrap itself around a bundle of nerves exiting L2 (lumbar spine) which in turn prevented the nerves sending messages to the muscles in my left leg. Those muscles just stopped working and atrophied, mainly ones in my buttock area and big muscle in thigh, so I can't trust that leg to behave. I have found a rolator really useful round the house and firmly believe like you that it is a case of either use it or lose it. But the leg isnt strong enough to walk any distance outside the house so I have a lightweight scooter to get around for hospital visits etc. Things are made worse because I do have a 2nd disease that affects my spine where the paraspinal muscles have atrophied so I have no strength in those muscles to hold my back up. So what with a dodgy leg and back that would be better suited to something running about on 4 legs! a few extra wheels come in handy.

Lynnq I was interested to read your post about stopping zometa. I can understand you being anxious about that. I wonder when someone discovered how much bisphosphonates could help repair bones, if they looked at us poor s*ds with holey bones and only thought 'short-term needs'. I think it is only in more recent years as newer drugs became available that a lot of us found ourselves living longer and becoming dependent upon drugs to keep us alive, but with little research into the long term effect of some of them. I know quite a few hospitals are now extending the interval between treatment with 'bishbosh'. I have been on one kind or another 3-weekly for 13 years now and paying a high price. I recently had a molar fall out after a lot of pain. Once it was out - great - the pain stopped. But only for a few weeks and now it returns at regular intervals needing a dose of ABs to stop it. I saw my local max-fax unit this week and the doctor had an OPG x-ray done (the kind that goes right round your head imaging the teeth and jaw). She thinks I might have either a recurrence of bone met in my jaw or the dreaded ONJ and wants a biopsy done. For someone scared of dentists that thought is even more scary. Think I might need something to keep me calm before it is done or I might bite someone LOL. I was told by the 'throat & neck' consultant at Fulham Road Marsden before the tooth fell out that she wouldn't extract it because the many years of bishbosh treatment would not allow the bone to heal and so the hole would be prone to infections and all sorts of problems.

Sorry folks - as usual when I haven't posted for a while I tend to go into overdrive ........ so I better shut up now before I start on the next chapter. Love to you all - I know many of you are going through tough times and we are all missing a lot of dear friends from this thread but let's try to keep it going for the many that continue to find us and need our support.

Dawn xxx

[Marirose]

Hello to my bone met friends

I was wondering how does the pain in the back effect you when you have mets in spine pelvis and legs. I have had the met on my sacrum and a slip disc 3 years now.But the mets in pelvis and legs are newly dx. I haven't had pain in the back but recently my back has started to ache not alot but I do get annoying leg pains which paracetamol in the night work and if bad a codiene with it. I do try to walk with my rolator a walker with wheels and a seat I feel if I don't use them I will lose them my walking is limited but some of that was due to M.S in the right leg.

Hope I don't sound as though I am moaning I know it will come one day but my physiotherapist recons I have a high pain thresh hold I'm not that good. 

Thanks for reading this xxx

[rosie53]

Thank you Lynn, I do walk a lot, I have always enjoyed going for walks, prob can't do as much as I use to  (need more pit stops now) but I do as much as I can.  

Janette xxxx 

[Lynnq]

Hello Janette...yes I did struggle with joint pain.  I was taking the full amount allowed per day of paracetamol along with the full amount of Naproxen.   Pain was in knees, hips and sometimes wrist and fingers.  It is much better now

I only take paracetamol and not even on a daily basis.  I walk every day (weather permitting)  and that makes me stiff but my doctor tells me that it is better to walk and take the painkillers than to not walk..    He says that one gets more from walking than just the exercise...

i also used to get aches in my upper thoracic spine, where my mets were/are???    and I don't seem to have that any more either....

[rosie53]

Lynn, quick question, have you struggled with joint pain on letrozole? I have had a lot more pain in my joints since starting them around 10 week ago, that being worse in my right hip  (where I have the worse disease).

I had my TMs done around 3 wk ago as I was so stressed out that things were getting worse and they are on the way down.....yippee was 167  and latest is 127 that's the lowest they have been in over 12 month so I am happy with that just hoping my CT results are just as pleasing!

Take care hugs Janette xxxx 

[Marie123]

Hi Lynn , great news, enjoy. Marie xxxx

[Lynnq]

Thank you Janette, Marierose and Redpark or replying.

Of course what you have all said is sensible. I will still see onc every three months. My TMs have stayed around the 35/40 mark for about a year. I will still have them monitored at my 3 monthly check up. My onc goes by my TMs, in my case - he says - that they are a good indicator, but knows that in some cases they aren't. He only does scans if I have any symptoms etc. I went for over a year with no scans, but then they arranged two quite quickly when I had really bad neck pain - which turned out to be a trapped nerve - so they do react.
I was diagnosed just as they were changing over to denomusab, onc said they would change me when it was more established. But I had such good results they decided to stick with the zometa....

I expected them to reduce the time between the infusion to every three months or so. Guess it is just the complete stop that threw me.

I feel a bit better actually now that I have shared my silly fears with someone....

I really hope that you have the same response as me as well. As much as I wish it for every other person that faces this awful disease....

[rosie53]

Hi Lynne, that's fantastic news for you although I can understand your reservations about your onc stopping the zometa, (I don't have that one mines denosumab) as long as your still getting your 3 monthly checks so that he/she is keeping an eye on you I would see it has a positive, are you still going to have regular scans and TMs done?  I would want that for peace of mind. 

I see my onc for results of my first CT since starting letrozole in October and praying I the same response as you have had!!!

Hugs Janette xxxxxxx 

[redpark]

HI Lynnq

I am in the same stiutation as use having Letrozole and Zometra. I know that the Onc said that after I have had the infusion for a few years they would stop it as it would have strengthen the bone as much as it would and also there can be long term effects on the kidney. I would ask your onc or the BCN why they are stopping it in your case you are entitlied to a reason. All the best

Sarah

[Marirose]

Hello Lynnq

It is understandable you are concerned but it is good news that Letrozole has worked so well for you so congratulations for that. You will always have the worry of cancer that will not go away but stay positive your onc will know what is best for you. Did you have a scan and will you be able to have another after 3 month I would be inclined to ask if a scan would be possible. But good luck and enjoy your freedom and keep in touch.

Geordiex and Janette I will certainly get the Sound track

Love to all xxx

[Lynnq]

Hello everyone.

i saw my onc today, usual three month appt.  as a lot of you know I have been very lucky since dx just over three years ago - had  letrozole tablets every day and Zometa infusions every four weeks along with adcal.....

anyway I have not had any progression and some of my mets are no longer showing.......for which I am truly grateful

today onc said that we can now stop the Zometa altogether....and when I asked he said that there would be no replacement, just letrozole.

probably a bit silly but I feel a little anxious about that.  I will still see him every 3 months, and I am sure that he is right but......

sorry to be worrying over such a little thing when so many of you have much bigger problems to face.....

has anyone else ever had Zometa stopped?     

[rosie53]

Hi Marirose, my son bought it me last year when it came out. think he got it on - line. I keep it in the car, it's such inspirational song, all my family know it's "my fight song" too. 

Hugs Janette xxxxxxx 

[geordiex]

http://youtu.be/xo1VInw-SKc

[Marirose]

Morning all

I did see that Holly Kitchen died over Christmas just after our lovely Belinda so sad more so when they are so young and leave young children. Rachel Platter's Flight song is really a lovely song and I wonder if it can be purchased I tried to look for it but couldn't find it on sale anywhere at the time I first heard it.

To everyone who is at a difficult time I wish you lots of love and hugs xxx

[stresshead]

Such sad news about Holley....i wish there was some way her video could be put on mainstream TV so everyone could see the devastating effect of this awful disease. She was truly an inspiration. RIP Holley. x

[redridinghood]

Dear Holley.....she was strong, brave, funny, and worked so hard for stage 4 breast cancer. She made a difference. What a clever video she made for us. Prayers for her beautiful family. She was so proud of them. Another star in the night sky. Keep an eye on your little boys Holley. They still need you.

[rosie53]

Hi ladies, hope you are all keeping well. I've just seen on Facebook that Holley kitchen has passed away, do you remember her putting the video on Facebook with Rachel Platter's Fight Song playing in the background? It's so sad.

Hugs Janette xxxxxxx 

[Mermaid007]

I do walk on my treadmill as I think that helps all of the bones in general. I also do general simple yoga stretches. I think swimming would also be good. X

[Sameelee3]

Ok thank-you, that's really helpful. Ive got stiffness across my back now, and it could be down to the fact that I used my Green Juicer the other day and was using all those muscles that haven't been used that much lately as I've been protecting my back. But my stupid head is saying... maybe it's not that! The notion of " healing pain' does make a lot of sense, as I suppose when the cancer cells are blasted, the vertebra is left with gaps and is so damaged that the body has to work hard to create new bone to fill up what's not there. Did you do exercises to help? Thinking about gentle stretches etc, but dont want to do more harm! 

[Mermaid007]

Hi Sameelee, the rads results weren't instant. The discomfort was less like you say but gradually got even better over the following few months. I still sometimes get what Marie called the 4pm lower back ache with a real need to lie flat and I still find a days shopping takes its toll on my lumbar region but overall it's good. It may be that yours is even better than mine after a few months because I had to have an operation on a vertebrae in lumbar region so cd be why I still get aches. It will take time but I have been told that " healing mets" can be quite uncomfortable so take heart in that. Xxx

[Marie123]

Hi Sameelee, I had a 5 day blast of rads to my spine  Nov 2013. The pain relief was amazing. However, I did have what I called the 4pm ache afterwards This lasted for sometime.I didn't need pain relief I was just aware of an ache The neuro people have explained this as healing pain. They still keep a close eye on me. Infact seeing them tomorrow. I know it's hard to distinguish what is healing and what is not . Maybe keep a diary of what is happening . Sorry if this sounds muddled. Sendingyou postive. vibes. Marie xx

[Sameelee3]

Hi Ladies; and hi to Mermaid2007.and anyone else who had rads to the spine....... i have a question for you..... I had 5 radiotherapy blasts just before Christmas and mentioned before that I'm on Exemestane. The pain I had before the rads has definitley lessened, but my back does still ache across the centre area and I keep wondering if this is normal or a sign that the rads haven't  worked. Apparently it was quite a high dose that I had each time....but I have no idea whether I shoiuld be pain-free now, or not!. I also keep imagining tingling sensations under my arm and across my front sometimes and have a fear that the cancer has spread to lymph nodes already..... I can have a mammogram any time in Feb, so will do so early next month.  

My back doesn't hurt when I'm lying down and no longer keeps me awake at night, but if I stand or sit up at a desk or table for too long, I definitely need to rest or take a paracetamol. It is nowhere near as bad as before, when I was on Co-codamol 3 times a day and using a tens machine, but it is still there.... 

So, I guess what I'm asking is whether this is normal or not? i'm trying to visualise what might be happening to the bone tissue as it tries to heal and recover.... and the soft tissues damaged by the rads and how tight they might have become.... but I just don't know.... 

Anyone able to offer any wise words? 

[Chocolates]

Janette, whoa - you go girl.  That's fantastic.  Christmas Day on a lovely hot beach.  Can't beat it.  Yes I'm doing ok - usual niggles and pains but nothing major hopefully.  Still working, busy as ever.  Just getting on as best as we all are really.  Have a good week xxxx

[rosie53]

Hey chocolates, lovely to hear from you. Hope you are keeping well, thank you for your comment about my treatment, we went to the traval agents yesterday and booked to go to gran canaria for Christmas 2016!!! Being on a beach on Christmas Day is something I have always wanted to do and I thought whilst I am fairly fit and healthy enough to do it  (so to speak) am going for it 😆.

Hugs Janette xxxxxxx