Bone mets - please join in

[livlassie]

Hi Janine

I have had rad therapy to rib and hip areas without any pain flare up afterwards. However i had a single session to my lower spine which did result i an increase in pain. My main concern was that i hadn't been warned about this by the onc or the radiotherapy unit, so it took me by surprise and nearly sent me round the bend! Be aware and be prepared with proper pain killing meds and don't delay and try to tough it out before calling for help. If i had known i'd have been straight on to the onc unit or the PCT. I think it's all very personal and individual but be prepared anyway!  Good luck. xxx

[livlassie]

Val I haven't been on the  forum for ages as I hated the changes they made to it and couldn't cope with it. When I first posted on her, on the old old forum! You and some of the other ladies were so nice and gave me so much courage and hope at a time when I was reeling in shock.

I am so glad to see that you are still here and still full of life and kindness and inspiration to others.

Letrozole and zometa have stabilised my bone mets for two years now. Never dreamed two years ago that I'd still be well. Sure, the letrozole is a  bugger and makes every joint feel about  230 years old instead of 56 but I can cope with that  as long as it's working on the lesions.

I am away to catch up on all the posts I have missed over the last year or so. All the best to you an everyone else on here, xxx

[Buffy3]

Hi, nice to hear from you. You are right, on the move is fine but is getting up, could do with a crane 🙂 I also have a painful joint on right hand, onc thinks it maybe carpel tunnel. Hopefully it will settle as I really could do without that especially as its on my right hand. I am curious to see where this comment will go. Will it be attached to your comment or on entire thread!

[belinda]

Hi Buffy, lovely to read you were, at last, able to celebrate your first wedding anniversary in such a beautiful place. 🙂

I'm on Arimidex, again, a break from chemo so understand how you feel. I last had Arimidex 2004-2008. I'd forgotten how ancient I'd felt on it. Fine when I'm on the move but getting out of the armchair, bed I feel 101. Hope Letrozole is working well for you. And despite moaning a little I hope Arimidex is working well for me. 🙂

[midwife06]

Hi Buffy, I had such bad joints on letrozole that I started to experience carpal tunnel symptoms. My oncologist changed me to anastrazole , same drug type and my joints are much better, not pain free but so much better.

[Buffy3]

Hi, just testing. Had trouble logging back in...ended up with a screen that had a white cupcake with a cherry on top!!! Am doing fine at mo except letrozole is giving my poor body aches and sore joints. As long as the uggers are kept at bay can cope. I return to full time work next week...looking forward to it. My oh and I finally celebrated our 1st wedding anniversary on a fantastic Norwegian cruise around th fjords. Loved it. Love to you all lovely ladies. Buffy xxx

[Esha_Ness]

oops seem to have pressed the wrong something and lost a long reply ! So...................... welcome all to the new look forum. Watch this space.

[Mema23]

Thanks Val, I have read your posts as I have been trawling through the threads. You are my role model! Marion

[lizH]

Hi Ladies,
Just logged onto the new site! Glad i can see some familiar names and faces. love to all xx

[scottishlass]

Hello Mema23, My goodness lass you have been through the mill!  What a lot to deal with. I am on Zolindronate and was on Letrozole too but now on Tamoxifen instead. I have been having treatment for secondary bone mets for a ong time now, 14 years and first had BC 24 years ago. I am glad your family have rallied round to help you and as you say losing a bit of weight feels quite nice.  Keep posting to let us know how you are doing, Val

[Mema23]

Oops, pressed post too soon! Was going to say, have finally started some treatment for bony mets. Letrazole and zolendronic acid, will scan me in a few months to see what is going on. Had a horrendous month, open surgery to get a biopsy as its such a long time since my primary. Recovered from that and then got an infection in my wound, recovered from that and picked up C diff infection from somewhere. Had a dreadful 6 days in hospital and thought I was never going to be able to start some treatment. However, home now, recovering again and got back my sense of humour and onwards and upwards mentality. On a positive, I have lost a few excess pounds and all my lovely family have made it to Wales to look after me, although my youngest son turns out to be a useless nurse! Marion

[Mema23]

I miss the latest posts as well. Have finally

[belinda]

Hi all, oh dear I don't think I like this new forum. Just wanted to make sure our thread was still here. I shall miss the latest posts page I used to catch up with any news via latest posts.

[doodlecat]

Myfanwy, don't waste a minute of your time worrying about work. Look after yourself and evaluate work situation after your op. They have not got a clue.

June x

[Ramsfan55]

Oh dear Myfanwy that sounds like a grim group of people! You will get plenty of support from this lovely group so please try not to be down. Get this op out of the way and then perhaps you will be less stressed and therefore can re-evaluate your feelings about work and the people around you. Just surround yourself with those that care for you and love you. Don't waste your time on people who are selfish and inconsiderate xxxxx
suzanne xxxx
Val, love to you too in your continuing treatment plan x

[Coco0896]

Myfanwy18, please don't think like that. I cannot believe people would treat you like that, if they do, they are not worth knowing you are far better than anyone else, please do not despair, we will all get through this and how we feel, we are here to support each other, please believe that. I will PM you xx

[myfanwy18]

Hi,
Got my operation for recurrance on Wednesday. People at work don't seem to care, friend said I wouldn't be missed, other friends think it'll be water of a duck's back. Everything in me says I'm valid and should enjoy my life, but the support I'm getting makes me think a quick exist would suit everyone better. Sorry for being glum but my self esteem is zero right now.
Cx

[belinda]

Janine you must be in an awful amount of pain reading the combo you are on. 😞 No-one would want to be out and about in such pain. Rads do often make the pain worse at first. Not that that's helpful right now but it is still very early days since you've had your dose of rads. Amitriptyline is good (for me) with nerve pain. The pain clinic should be able to help, I really hope things get better soon for you..xx

[scottishlass]

Janine, I hope that your pain gets sorted out soon. The nurses there are brilliant at pain relief so I have heard from lots of people. The site will be off tomorrow so will hopefully hear how you got on when it is back and working again. Val

[Guest user]

Thank you friends for your advice and encouragement.

My oncologist got me in touch with my local hospice to help with pain relief as the pain has definitely got worse since the radiotherapy to my spine last Monday ( 12th August).

I am on Diclofenac, Gabapentin, Oxycontin, Co-Dydramol, Oxymorm, Steroids ( just for a few days to help after rads) and another nerve pain starting with Clon.... And I still can't lie in bed! The nurse at the hospice said my pain is very complex as it is bone, muscle and nerve!

I am trying so hard to be positive but I hate cancer so much and wish I could rip it out of me!

Friends have visited, but I am still not up to going out with them. My only trips out are to hospitals!

I was only diagnosed with time on 5th July. Am I expecting too much?

[scottishlass]

Thanks Esha ness and Belinda my dear old friends 🙂
I did ask my Consultant why they hadn't told me before but she just sort of said that they didn't always tell everything to the patient. But I thought our relationship was based on trust and if she is only going to answer questions that I have asked specifically and NOT to tell me other important things, I am not happy and plan to tell her how upset it made my feel, not because I have scull mets but the fact that she did not choose to tell me that I had.
The same happened at the dental hospital. I had been going every month since around December for them to keep an eye on my mouth/bone/toothy bit. A few months down the line, perhaps 4 months someone casually mentioned my necrosis of the jaw. I asked " are you telling me this IS necrosis of the jaw" and they said it was.....but no-one had actually told me that I had. They obviouly knew but chose not to tell me.
I also heard last week at the dental hospital that radiotherapy to the face/head can caue another form of necrosis that is caused by radiotherapy. Now my Radio Consultant decided that she would not give me radiotherapy to that part of the face/cheek where the scull mets are ( also in other places on scull) because they were so close to the necrosis. But she never told me that the radiotherapy itself could cause me other problems in the face. Why don't they just tell us everything and we can then make proper decisions. But I will be making sure in future that I want the whole truth and nothing but the truth!
Apart fro that I am feeling really well and enjoying life now that the chemo is over ( for the moment) and my hair is growing back. It looks a bit like the hairstyle that Muriel Gray has! Hope you are all muddling along. XX

[belinda]

Hi everyone.
Esha_Ness I'm not on the EE combo but I have been reading somewhere here that some are finding this a great treatment. Good Luck.
Val I think you have made the most sensible decision, I would, hopefully, be as wise as you if I ever find myself in the same position.
Janine, think I mentioned I was in a similar place pain wise last Autumn. I was only able to sleep on the sofa sitting up. Being me I had put up with the awful pain for a few months before I had an MRI and some emergency Rads over Christmas. I had some nerves being pinched, by bone mets, as they went down one leg. The pain was unlike I'd ever had before. My rads were to my sacrum I'd had rads there before but many years previous so I was able to repeat the area. And while all this was taking place I was referred to the Pain clinic. Gabapentin didn't work for me at all, it actually increased the pain. Then I was given Oramorph during rads and after Oxycontin which was marvellous and one Amitriptyline at night. The rads worked wonders too. I would also recommend the pain clinic at your hospital above your GP. They are so knowledgeable and know how to tweak treatments. At first I was nearly sleeping standing up I was on such a high dose of everything. Hope things improve soon.

[Esha_Ness]

Hi scottishlass
Have just read your post and fully appreciate and support what what you say. I am surprised that your Consultant chose not to tell you about your skull mets. Do you think it would help if you asked him what his reasons were for this? However when you have written about your medical care I have always been impressed by your treatments.
I have always been amazed by your continued support that you give us all..... The mother of the forum! so I hope we can support you too through this blip. Your OH sounds a gem too !
As for me my bone mets are stable but I have progression in my lung. Will be starting Everelomus and Exemestine in the next few weeks.
For those of you who are new to the forum, I was diagnosed with secondaries in 2010, 10 years after primary diagnosis. I continue to lead a full and active life with no symptoms.
Jan 2014 I will have been living with secondary BCC for 4 years.

[scottishlass]

Thank you girls, that means a lot to me. Hugs, Val

[Coco0896]

Hi Val, sorry you have had such a terrible time and respect you so much for the decision you have made as to what is best for you. hope you have a lovely weekend Meg xx

[Julesie]

Hi Val
Can entirely understand your decision re the biopsy and especially if you're not in pain with the necrosis. Can't understand why the consultant chose not to tell you about the skull mets though and, like you, I'd be feeling disappointed. I don't think it's daft for you to feel like you've been lied to. Unless someone has expressly said that they don't want to be told the detailed results of scans, I think we've a right to know everything.

[scottishlass]

I had another appointment at the dental hospital to discuss the mouth problem. The result? I do NOT want to have a bone biopsy done at the moment nor do I want surgery afterwards to remove the dead bone. The stories she told me sounded horrific and hey it's about quality of life isn't it? She told me about a lady who was in so much pain they had to remove her lower jaw. She was no longer in pain but it affected her eating and drinking and she had scars on her face as well. As I may ( or may not) be around for many more years to come I do not see the point of having any surgery as the neccrosis is NOT causing me any discomfort at all. I do have a numb face but it is slowly improving and only numb on lower lip to chin now. If I couldn't eat, drink or talk I would find life just unbearable. I can phone them again if anything changes but I just want to " leave well alone" at present. I return to see them in a month or so.
We are having French visitors arriving this afternoon. The come from Bordeaux where my elder daughter lives and they couldn't get anywhere to stay in town because the festival is on and the hotels are all booked up. They are flying off on Monday. but we do not know them although I have met the man once before . But they do not speak much English I am told. Shound be fun. Have loads of food and drink in. Have baked 2 cakes. But I think they will probably want to head up town to take in the ambience of the city as it is quite wonderful at the moment with all the shows going on. But they are free to do there own thing.
I am feeling pretty good at the moment but the though of now having scull mets has upset me a bit to be honest. I also found out I have had them for years yet my Consultant chose not to tell me and I am unhappy about that as I am the type of person who likes the honest truth. I found out from the dentist that rads on the face can also cause a different form of necrosis and this was the first time anyone mentioned it. Seems to me I am being told what they think I should know. It is my body and my life and I think I am disappointed and almost feel that they have lied to me ( although this is a bit daft, I know). Your thoughts/opinions would be good. Hello and hugs to all my bone mets friends. love Val

[scottishlass]

Hi Janine, I think you need to ask if there is a "Pain Speciaist Team" at your hospital. Are you on MST slow release morphine daily? I have experienced this type of really acute pain before but since i got my meds sorted I am generally pain free now. I take MST, Gabapentin twice a day and amitripptyline. You could ask to increse your Gabapentin too. I also have Oromorph for breakthrough pain but have not used it for months. There is no need to suffer pain like you describe. If unbearable you could phone your hospital and speak to the on duty Oncologist to talk it through. I once had to go to the hospital and get a morphine injection as the pain was relentless and nothing would shift it and it worked well. Let us know how you get on. Val

[Thumbie]

Hi Janine,

How awful. I don't think I've had pain as bad as this. Do you have other things to take as well as the gabapentin? You shouldn't be suffering like this. I had oramorph plus paracetamol when I was in bad pain from mets in my hip, before and after radiotherapy, and eventually on slow release morphine. This was prescribed by a Macmillan nurse from Hospice at Home. Do you have one? Mine is available through the weekend.

I hope they get it sorted soon.

All the best
Ruth

[Guest user]

Thank you for your replies so far 🙂

I had radiotherapy to my spine ( T 4-10) last Monday and haven't been too bad - so far! But my nerve pain has got worse from my spine on the left hand side through to my chest. It feels like red hot pokers in my skin and last night I was screaming in agony! 😞 I am already on Gabapentin.

I am also SO fed up with sleeping upright on my sofa as it hurts too much to lie in bed. This has been for 2 weeks now!

Is anyone else in/ or has been in this position? I desperately need cheering up please.

Best wishes to you all,

Janine xxx

[Thumbie]

That's good news Birgit. Letrozole seems to be working for me as well. I have mets in hip and spine. I hope you are not getting pain from your hip. I think swimming is excellent exercise for aching joints as it is not weight bearing. I have been trying to swim each week, but only in the trainer pool, not in the shingly sea! More power to you.

[Guest user]

Val, I agree, they really have no idea! I suppose to the consultant etc. 'bone mets' is better than other mets, but not for us that have to suffer from them. Glad to hear though that your brain scan was ok. Is your poor mouth a result of years of zometa?

Sorry to see that a few new ladies have had to join us. I've been absent a bit, enjoying the weather, despite the fact that my lymphoedema arm does not. But been swimming a lot, which helps a lot. Hubby has to help me in/out of the water - depending on tide there is often a steep shingle bank to climb up. Now have mets in left hip, but apparently stability is not affected, so no fear of suddenly breaking my hip. Have further appointment in September to discuss further options. Good news is though that cancer markers have not gone up, so Letrozole is obviously doing its bit.

[lucinda]

Hope they come up with some answers for you and a decision on the best treatment. Will be thinking of you. Just bone mets!...they have not got a clue as you say. I have just returned from my 100 mile round trip for rads ( the 4th this week and 2 more to do next week). The radiologist could not believe I travelled so far but even if I had treatment at my local hospital is does not have a radiology unit. Oh well almost there and hopefully the pain will reduce. Take care and enjoy your weekend.


Lynn xx

[Thumbie]

Best of luck Val. Hope they get a definitive diagnosis and treatment plan.

Ruth x

[scottishlass]

Got a phonecall tonight from the Dental hospital. I have to go in tomorrow morning to have a biopsy done of the exposed bone in my upper jaw. I was at the Dental hospital yesterday and they were looking at the recent CT scan of my head which showed scull mets. Now they want to see if the exposed bone is in fact osteonecrosis of the jaw or (just!) bone mets ( as has shown up on my ct scan). Having bone mets now in my cheek is not something I wanted to hear rally especilly as I have been feeling better. Hey ho. If only those without cancer realised just how much of our everyday normal life can be taken up with side effects/ treatments/ recovering from/ waiting for results etc. They just do not have a clue do they!

[Coco0896]

Hi all and thanks to Lemongrove for your comments. I was diagnosed with multiple bone mets a week ago and have been told by my Onc team that they will complete DS1500 form for me, I was told I have 2-3 years left which I know some people don't agree that I should have been told this but were they doing me a favour so that I could get some benefit help, don't know but I cannot believe that any one could say that this is only bone mets! It's outrageous some people have no idea what it is to be told you are stage 4 cancer and can not be treated, these people should try living in our shoes! Xxx

[myfanwy18]

Hello Ladies,
Don't post often but just to say got results of scan today. Scan fine, no change. Breast cancer recurrance was just some, even just one, cell that had got caught in "deadend lymph vessel near skin" from original op so another small op and change of tablets. Onc is changing me from Zometa to Denosumab to. Does anyone have experience of this drug? I'm jumping about the room with delight because the Onc said the op would be before I go to Cornwall on holiday at the end of the month so I'll have a care free (well relative with secondaries) time. Claire xx

[belinda]

Agree with 'only bone mets' comments. And once you have bone marrow involvement it restricts your treatments. But I read on the Secondary forums just recently, someone's Onc (I can't remember who, sorry) had told them they were not concerned about marrow involvement.

[Thumbie]

Thanks for your reply, Belinda.

Lemongrove, I am flumoxed by the DLA thing. How can someone be eligible for a DS1500 one day and be denied one despite having the exact same condition 3 years later and further into the prognosis? It is great that some treatments can hold things for a while but it's no cure and not a given. There are also invisible disabilities with bone mets, such as pain and fatigue.

Have the doctors been pressurised into denying DS1500 to bone met patients?

[dawnhc]

HEAR! HEAR! Lemongrove - I think I might just thump anyone that said that to me. I think the fact that my pain team at the Marsden were prepared to put me forward for an intrathecal drug device earlier this year at least tells me they were taking my pain issues pretty seriously.

Janine your experience sounds quite shocking especially that they weren't able to come up with any solution to help over a period of 2 hours. Sounds like an awful lot of indecisiveness. Interestingly I had a recent experience with sedatives and an MRI scan. Because I experience extreme pain when I have to lie flat on scanner beds I did ask my onc this time for his thoughts on what I could do to manage this and he suggested perhaps a sedative as obviously any more pain meds weren't going to achieve anything. So on the morning of the scan I took one Lorazepam and an hour before the scan another one. Brilliant all went well - no pain!!! Let me wind forward a couple of days....OH remarks on odd smell in lounge and wonders if pigeon left its calling card. I was surprised and asked 'what pigeon?' which prompts him to say he knew I was losing it!!!!! Well I don't remember any pigeon getting into our lounge and wonder if he is getting confused and it happened while our daughter was here and I hadn't witnessed the visit at all LOL. Move on another couple of days and I suddenly realised I hadn't heard from the Marsden about the MRI scan and if they had been able to arrange for the Medtronic rep to be there to make sure my intrathecal drug pump restarted again after the scan. Because of all the magnetic fields in the room it does stop the pump working and it has to be rechecked afterwards to see if it has restarted..... are you confused yet... have you realised I said I had already had the MRI scan...I started to get confused because half of me knew the day had passed and I remember Peter taking me but I recall nothing after that. Then I recalled some years back after having a hickman line put in and being given sedation for it and a nurse saying 'you won't remember anything afterwards'!!! and realised this is what had happened. The pigeon had visited us after we got back from the hospital so that memory was wiped as well. I even went so far as to ring the Marsden MRI dept and ask them to check if the Medtronic rep had been there after the scan and checked my pump. They took this quite seriously and passed it to the Superintendant of the Dept who called me back to assure me the rep had been there - gave me her name as well.
I'm not sure what to do when I next have a scan. It was a huge relief not to be in pain - or at least not to recall it - when having a scan but just a bit worrying that chunks of memory can be lost.

Dawn
xx

[Lemongrove]

It make me so cross to read on nother thread that people are being denied the opportunity to claim DLA under DS1500 rules because their doctors say they "only have bone mets". These so called medical professionals should know better. Bone mets can be extremely serious indeed. Bone mets in the spine can constrict the spinal cord and eventually cause paralysis and incontinence. Skull mets can grow inwards towards the brain and cause what the medics refer to as concomitant progression.
In my view, it's a shame that medics who tell a patient they "only have bone mets" can't be made to live with bone mets themselves, just for one day.

[belinda]

Good news from your scans Thumbie. I (think) tumour markers are very individual and it's the overall trend and what is considered normal for you which the Oncs go by when trying to guage if a treatment is still working. My markers were considered very high (for me) just before Christmas when they suddenly jumped into the hundreds. But my markers are normally hovering around the 30-50 mark when a treatment is working. The CT result showing the bones healing is great news, it's a shame about the hips but isn't that just typical! I used to be so fixated on my marker results but I was told the same as you, it's how you feel which is important.
Hi Janine, I had some emergency rads over Christmas and was able to use various wedges and supports the staff had to hand as it was much too painful for me to lie flat without bending my knees. I also used the instant relief liquid Oramorph, prescribed by one of the pain team at my hospital and was able to time the drops so I had some pain relief when I needed it. I had some increased pain at first, days one and two but the rads did work. I felt much better by the end of the week and before the rads I was in such a lot of pain. Hope next week goes well for you.
Hi Joanne, I had some pain issues on starting Arimidex so Exemestane could well be the cause of your recent pains.
Hope everyone is finding treatments effective and enjoying summer.

[Thumbie]

Hi All, I'm really pleased- found out today that my recent CT and bone scan show some possible healing in my spine (although a slight bit of progression in my hips). Also no sign of anything sinister in any soft tissue or organs.


Just one little niggle. I had the scans because the tumour markers were up. The oncologist today said that although they were high they were not rising but hovering around the 1500 to 2000 mark. That sounds mighty high to me, but my oncology team seem to go on how the patient feels and are happy for me to continue on letrozole and denosumab. That's good, because I don't want to change treatments and run out of options. But I'm a bit worried about those tumour markers. Anyone got thoughts/experiences?

[lucinda]

Janine so sorry to hear of your horrendous experience. I did have excruciating pain in my spine when first dx so can really smypathise. I am having rads this week to my left pelvis and have not experienced any increase in pain, I also hads rads to spine an right hip and did not suffer pain flare due to the rads. I found great benefit to my spine following the blast of rads.
Do you have any morphine type medicine for breakthrough pain you can take prior to treatment. The rads treatment is very quick,usually just a couple of minutes, but the bed is flat. I would think they have methods of treating people with mobility problems, I always have problems getting off any of the scan beds but I have kind of worked out how to roll off rather than standing straight up (keeps the staff entertained ! ) but have never become immobilised, that must have been really scary. I really hope it goes well for you and they have a plan.

L xx

[Guest user]

Does anyone know if a blast of radiotherapy makes back pain a lot worse at first? My treatment is happening next Monday.

I have recently been feeling so much better on the painkillers and am concerned about going back to the horrendous pain I was in, especially as I mainly live alone.

Many thanks,

Janine xx

[Guest user]

Thank you very much for your reply Thumble. The radiotherapy department do know what happened as apparently the staff were traumatised too! I find it very hard to believe that they were fairly clueless about what to do and I was asking for a strong painkiller or sedative and received nowt!

I can walk and got on to the table quite easily, but getting off felt like my back was being broken!

If they haven't got things in place next Monday, then I am doing a runner! Well, at least a slow walk out the door! 😉

I will let you know how I get on.

Janine xx

[Thumbie]

That's very worrying for you Janine. Would it be possible for you to have a very powerful painkiller, or even a sedative, just to get you through this process?Maybe you could phone the radiotherapy department and tell what happened. It may be that they have equipment and specific tables etc to help manoeuvre patients with extreme mobility problems, after all this must occur quite frequently.
All the best for your treatment. I found that radiotherapy helped when I was getting pain in my back and I was eventually able to stop the painkillers. It didn't kick in until a few weeks after the treatment. So don't despair if you do not get immediate relief.

[Guest user]

Hi Everyone,

I was diagnosed with breast cancer (Stage 1, Stage 1) in March 2010 and had a lumpectomy, radiotherapy and Tamoxifen.

On 5th July this year I was diagnosed with Stage 3 breast cancer and bone mets in my spine. I was very shocked and overwhelmed by how unbelievably painful bone mets are! I was unable to do anything due to the horrific pain!

I am on Arimidex, lots of painkillers and have had one bone strengthening injection in my stomach. I had the radiotherapy planning and tattoos last week, but it took 2 hours for the radiographers to get me off the CT scanner table as my back pain was so severe. I was pretty traumatised and shocked that the medical staff didn't seem to know what to do. Has anyone else experienced this?

I am due to have radiotherapy next Monday and am understandably scared now.

Janine xx

[Tylerrose]

Morning Ladies feeling a little wobbly this morning shaky but all inside really wierd feeling think the chemo might be kicking in a bit although it was only Friday don't feel poorly but really a queer experience, but ill get on with my day hopefully it will go away. Xxx