Bone mets - please join in (Part 1)

It must be difficult Val to have your help taken away. I hope your husband has a speedy recovery.

I have been thinking about all the avoidance stuff that I do and it would probably be different for some people depending where the bone mets are.

I never travel by bus anymore, they jerk and jolt you all over the place, had too many days of pain following a short bus journey. I also have suffered from sitting on all types of chairs apart from my desk chair, hospital appointments are a bit of a nightmare as you sometimes end up sitting on those hard plastic chairs for a couple of hours. I figured out that in my desk chair I lean forward to use my computer, taking the weight off the base of my spine. So now when I sit anywhere I lean forward slightly - the difference its made is pretty impressive.

There are plenty aids, for gardening and suchlike on the mobility sites to avoid bending. Not that I do gardening but I know a lot of people do enjoy it.

I am sure there are loads more avoidance techniques I do but the taking the weight of the base of my spine has helped me the most.

Best wishes to all x

Dawn I am on 900mg gaberpentin per day. Along with the pain relief I am also on zopiclone which are sleeping pills. So yes I do have trouble with sleepiness, but not often whereas I do have more trouble with fatigue - these of course are very different from each other.

I have managed down my oxycontin last year, but I had not realised that this would involve going through withdrawal symptoms which were horrendous. I do consider managing down even more, but as I have been in pain of late I am querying the wisdom of that.

In terms of arthritis, the scan has been able to identify that which is cancer and that which is arthritis - I imagine they have different signals.

Celeste

Hello Everyone
I got bad news at the hosp the other day, basically the cancer is in every vertebra in my spine, going right up into my neck, and it has also spread to the humerus bone in the shoulder. It has been the cause of intense shoulder and arm pain for the last few months, which I had been told was tendonitis, but itā€™s not. I am going to have a blast of radiotherapy on the shoulder next week. When you have radiotherapy on a bone, does it give you instant relief from the pain or does it take a while to take effect does anyone know? Also, will this only be a temporary measure and will the pain return?I am really down at the mo, if anyone can encourage me, it would be great.
Best wishes to all of you,
Love from Claire x

hi claire

sorry to hear of your bad news.

i had radiatherapy to my lower back and also my left rib cage back in february which had been causing me excruating pain it took a week or two but the pain virtually disappeared I do have to say though in the last fortnight the pain has returned lasting for a few days but again has eased off for now.

max x

hi claire,

so sorry to hear that your bone mets is worsening. How long since it was diagnosed and what treatments have you been on for it? I have had radiotherapy to various parts of my bones including the neck, both hips and twice to the lower spine. I donā€™t think many people get instant relief - sometimes it can get worse for a few days before it starts to get better. It is worth knowing that 'cos to find it getting worse can be quite depressing if you donā€™t know why. I think everyone reacts differently but for many it does bring relief and often it is long lasting. My neck and one of my hips was zapped about 8 years ago and have not given trouble since.
Hope this helps.

Dawn
xx

Hi Claire, I have had radiotherapy on my lower back and also my ribs twice. Unlike other radiotherapy I only had one session for my ribs but my lower back I had a few sessions, but not a full week. I didnā€™t notice instantly but it did help and the benefit has lasted for a long time. I had tattooes on the spots but they are smaller than my freckles so not noticable. I am sorry that you have had this new diagnosis. I hope that some painkillers may help. Any questions at all, just ask me. Take care. Love Val

Hi Claire, you certainly have alot to take in at once but when I was speaking with my Onc two weeks ago she didnt seem bothered as to how many place in spine mets were but the fact that that are contained makes the difference. Im still waitng for my reslts of my cat scan so dont know if Im anywhere other than multiple spinal mets at moment.

I had my one off radiotherapy dose 16 days ago, before which the pain was exruiciating, it still is sometime but there are moments to where pain has definetly decreased, One couple more big bonusā€™ for me is that I can move my feet and toes more and the twitching/numbness to my legs/buttocks/vagina are improving too so its must be working in some positive way.

The worst part for me has been the sickness but I was very low before I had rads, I had gastroenterirtis so didnt feel 100% ready to deal with rads but didnt want to wait any longer as the pain was too much to handle. Yes 2 weeks on Im being sick about 2-3 times a day but maybe you will take to anti-sickness better than I did.

For the discomfort I have had over last 2 weeks the positives have far out-weighedthe negatives and if you can think positively that this isnt the end of the road its just another hump to go over Im sure you will do the rads and see an improvement.

best of luck follow you instincts they rarely let you down xxxx Ann B x

Hi Claire, Iā€™ve had two separate sessions of radiotherapy in the last year, both to the spine. The first one took a few weeks to show improvement but the last one about 8 weeks ago gave me relief almost straight away. Depending on where the radiotherapy is going to be given, anti sickness tablets and a few days of steroids are given. These worked well for me.

Best wishes

Paula x

Thank you all so much for your responses. It does make me feel better. I am trying very much to feel that this is a hump to go over, and not the end of the road, although one family member thinks Iā€™m on my last legs! I have just had gastro enteritis and am recovering from that - I guess the enforced rest I have had due to that has helped rest my arm, which is less painful now, but I hope the rads takes away the numbness and pins and needles which is really annoying. And I desperately want to be able to drive again. I havenā€™t been able to drive for a couple of months because the pain is too bad and driving makes it worse. The Onc is referring me to a Mac nurse, and I hope to talk to her about the possibility of giving up work, but that would only be poss if I could actually get DLA, as I am on my own with children and canā€™t afford to lose my salary and Tax Credit.

Take care everyone.
Love from Claire

I am very sorry to hear of your pain. As for DLA you should be entitiled to this as soon as you are diagnosed with secondaries. I found that the ladies on this site were a mine of information. Your macmillan nurse will help you with the forms. My wonderful maccy did, she filled it all in, all I had to do was sign and give my NI number.It is not means tested and I felt a little guilty at first about claiming as I am very lucky to have not much pain at present and although signed off work at the moment hope to return in October.She pointed out that it will help with utility bills( obviously when you are at home you use lights heating etc) car parking at the hospital, which are outrageous at our place, and phone calls etc. She even suggested that she may be able to backdate it to my dx date in May. The DLA should then open doors for you to perhaps be able to get a modified car, or at the very least a blue badge. The maccy will be able to help you with all this and may go a long way to making practical things better.
x sarah

Hi Claire,
Have been reading this thread with interest as I to have bone mets, I posted my history a few pages back.
I feel for you being on your own and having to go through all this hassle that we ladies have to put up with. I do hope you get relief from the pain with the radio.
I would seriously ask your mac nurse about DLA, it is not means tested and you should get it with having bone mets.When I first applied for it my mac nurse took the form away and filled it in for me, as some of the wording is quite scarey and you havnt got to take it litrely, as you should be able to claim under the special rules.
I hope all goes well, please take care.
Roz xxx

Hi Cromercrab,
Sorry, didnt mean to go over what you had already posted to claire, your post wasnt there when I read the page but then when I submitted there you were.I think the DLA is very helpful to us as you have pointed out.
Hope all you ladies are having a good day today.
Lots of love
Roz xxx

Hi Dawn
Sorry I didnā€™t answer your question about my diagnosis. I was originally diagnosed in 1996 with the primary. Then in 2006 I had a lymph node come up in my neck for which I had chemo and rads. Then in 2008 came the secondaries in my spine and ribs. I have been on capecitabine for the last year which has shown good results in my blood tests, but obviously the mets have still been increasing in my bones at the same time, which was a shock, as I felt the chemo should keep everything in check. My Onc says I should be glad itā€™s not gone to my liver or lungs and that the capecitabine must be doing a good job to have stopped that happening. Iā€™ve just had a phone call from work, they say they would like to get occupational health involved and that it might be poss for me to retire on the grounds of ill health and draw my pension as though I was 65 (I am 44.) This might be a good option, as I am about to start back on the capecitabine again and it does make me very tired and I donā€™t think I could work full time anymore. If I canā€™t get DLA I may have to sell the house and go and live with my Mum as I donā€™t know how Iā€™d pay the bills. But I am waiting for my surgery to refer me to a Mac nurse and then I can talk it all over with her. What scary times these are, I donā€™t reckon people have any idea what we have to go through, with the ripple effect of having cancer and all the troubles and uncertainty it brings.

Take care,
Love Claire x

Hi Claire,
Just wondered if your surgery has put you in contact with the mac nurse yet,if not I would start to ring the surgery and ask them for a name and number so you can start the ball rolling. You are very much entitled to DLA and it would be one less worry for you if you got the money as in a lot of cases they will backdate it.Sounds like your company have your best interests at heart.
Hope you have fully recovered from the gastro enteritis. The rads should soon kick in and take away some of your pain, then you will be back on the road.
Please take care, lots of love Roz xxxx

Wholly endorse what Rozvi says in her postā€¦

Iā€™m hoping that after my bone scan on Sept 8th it will be confirmed that I have treatable mets in either back or ribs where my current new pains are (original dx left shoulder - Tax x6 rads x5 aromasin,ad-cal,bondronat regime). All responded very well and have had 8 months like a goodā€™un but recent pain issues suggest spread to me despite my last markers being good. Iā€™m braced for more rads if nec but donā€™t relish the prospect of chemo againā€¦ ho hum keep plodding on grateful that my marvellous Mac nurse has sorted out a recent bout of horrid gastritis and balanced the pain relief meds. bcc is ab. fab. but, face to face when the chips are down temporarily, where would we be without the Macmillan team?!

All the best to you all as we bump along the roadā€¦teachehrjy

Hi Claire,

Just read your posting on this thread and the bit about work getting in contact with you re early retirement.

I was diagnosed just over 3 yrs ago and had bone mets and lymph involvement from the start. After a year off for treatment I tried to go back on a staged return basis doing 2 half days a week. I lasted 4 weeks before going off again. A month later, I asked to be considered for early retirement due to ill-health even though I was warned it would be highly unlikely I would get it at all. It was one hell of a struggle and took over 4 months but finally when the pension fund doctor saw my case he immediately granted me full retirement so I get my pension as if I had worked to 62 (company retirement age). I was just turned 43. It took a lot of adjustment but Iā€™m soooooo glad I did it and the point of my ramblings is that I would say if the company are offering it to you, snap their hands off !! Itā€™s not easy but well worth it in the long run. I still get incapacity benefit and since Feb this year Iā€™ve had dla - apparently I could have had it from the start but Iā€™ve never had a Mac nurse and no-one told me about it.

Good luck with everything and if you want any more info on my experiences, feel free to pm me.

Liz

PS - What you said about the ripple effect of bc is so true and Iā€™ve found the time after treatment harder than the treatment time itself (donā€™t count the hospital trips for zometa and drugs now!)

Hi Claire

Sorry you are having such a hard time just now. Just to reinforce what the others have said you are definately entitled to DLA. I sent off for the form myself and took it to the local CAB office who were very unhelpful and said I would not be entitled to it because it was JUST bone mets!! Someone on the forum advised me to go to a mac nurse and she sorted it all out through special rules signed by my GP. I finally got it and it was backdated till the day I first sent off for the form - very nice!! As the girls have said it is not means tested - I am still working but it is a great help and you deserve it.

Good luck and I hope things improve with your radiotherapy. I have also had two blasts it on my spine and although I was very sick the first few days afterwards it was well worth it. Make sure to ask for some anti sickness tablets and I do hope it helps you.

Anne x x

Re DLA, I donā€™t know what my Maccy wrote, but I got it within a week. I am now applying for the disabled railcard which will give me and accompanying person a third off fares. You just have to send a copy of your award letter. I am going to the Penny Brohn centre in October, hopefully, and this will help loads with the costs.I just have to get my head around the ā€˜disabledā€™ thingy.
x sarah

I just found out today that I have secondary bone cancer. I was first diagnosed with breast cancer in 2003 and at that time never once considered the possibility that I would die. In April of this year I was discharged by the onc and felt life couldnā€™t be any better, I full expected to live a normal and long life. Within two months of being discharged I found a massive lump in the chest wall on the side where I had already had a mastectomy. Since then I have found a smaller one in the other breast and one at the top of my spine. That has now confirmed to be bone cancer. I have no idea how extensive the bone mets are, I was so shocked when I got the news, I didnā€™t think to ask.

I donā€™t feel any sense of hope at all at the moment. The onc was quite negative, his exact words were he couldnā€™t in all honestly tell me I had 10 years (Iā€™m 45). He also told me I shouldnā€™t expect a normal life span but he couldnā€™t say how long I had left as I could get run over by a bus tomorrow. Plus, I keep reading things like ā€œincurableā€ and ā€œpalliative careā€ and how treatment from now is about prolonging life not curing the disease. Iā€™ll never be well again.

If I could use one word to describe how Iā€™m feeling right now itā€™s ā€˜sadā€™

Hi crawfo - youā€™ve come to the right place, youā€™ll find plenty of support here from people in a similar position. I am so very sorry that you have had this devastating news, just when you thought it was all going so well - we all know exactly how you feel. But as shocking as a secondary diagnosis is, having bone mets isnā€™t necessarily as bleak as it sounds. There are many ladies that find their bone mets can be kept stable and have a high quality life, although perhaps not in the same way as pre dx.

I think my onc said the same sort of things as yours, but with a more positive spin. Certainly there is no cure (yet) and there are no guarantees, but she thought there was every chance that I would live long enough to die from something else!(Iā€™m 51) Iā€™m on two drugs that I tolerate very well, just some stiffness (which may even be a hangover from chemo, and not these drugs).

Perhaps it is too early for your onc to have given you a treatment plan - but I imagine you will be put on bisphosphates straight away to strengthen your bones. These are relatively new drugs and have made a huge difference to the treatment of bone mets.

If you have time read back over this thread from the beginning - you will find there are many here that have been around for years with bone mets.

Keep in touch and let us know how you are doing.

Love finty xx