I haven't posted for a long time but am glad some of you that helped me so much when I was first diagnosed are still posting helping others. I was told I had bone mets fairly quickly after a mastectomy, first lots apparently then just a little bit in my spine, that was October last year. I've only had Tamoxifen and Zolly but seem to be ok, no pain, which, reading your posts I am most thankful for. I have been put forward for a DIEP flap reconstruction at another hospital but have been referred to a multidicipline team at that hospital so I don't know if it will happen or not. I was surprised at how I felt - I think knowing I would get a reconstruction helped me cope with losing my breast but the thought of not getting one makes me want to cry and grieve the loss, all this time later which I really didn't expect. Anyway, for anyone who is worried they are just on Tamoifen and Zolly acid don't worry, it can work very well at keeping you well.
Hello Annie, I have no experience of marrow problems but I wondered if you would be having neulasta injections? I'm no expert, I may be wrong, but I think the injections might make it easier to have your chemo because of your low platelets and other problems. I'm sure I have read here, somewhere, that weekly taxol is kinder. I hope it does a great job for you. Lots of Love..xx
Sorry I’ve been quite a while, things haven’t been great. Thanks for the wheelchair post Julie. I’ve been able to go out in it the last few days and just being out by the sea air makes such a difference. I feel so guilty for Mum or Hubby who has to push it, but my tiny 3 year old gets on my knee and thinks its great. A welcome however temporary measure. For reference we hired it from the red cross for a ‘donation’ and we don’t have to take it back until January! Hope you’ve had a lovely weekend with the family Val & Susie. Mum has flown over here to be with me and its so lovely just having her here and she’s such a support to OH, who I think almost lost it this week.
Sarah- sorry to hear you were struggling with SE. Which are you struggling with most? You mentioned more navelbine or an op, what kind of op?
I’ve had a weird week this week and wondered if anything like this has happened to anyone else. I had my results from a bone scan that showed pretty extensive bone mets in spine, rib, skull, humorous and femur and on top of the terrible pain I’m experiencing, my Hb and platelet’s (both produced in the bones) dropped very quickly. Any kind of moving was impossible; I was so short of breath and faint. I was eventually given a blood transfusion that has made walking around manageable and I’m about finding a cocktail of painkillers to get me through the day. Plan for radiotherapy for pain has been abandoned in favour for weekly taxol to treat my disease while its so active. I’m going to have a picc line fitted, have a bone marrow biopsy and begin my treatment this week. Does anyone have experience of any of this?
This last week has been so frightening, I’ve felt so poorly and in so much pain and my OH has really struggled and been frightened too. I’m optimistic and ready for treatment next week, but these setbacks are so hard to come out of.
Big hugs to everyone x x x
For those of you hopeing to get away. Enjoy and try to forget every-thing.
I am away with my daughter, son-in-law and grand-son tomorrow to Wales. Hope there isn't too much rain!!!
Trash x x
Happyfeet, thanks for PM, have replied. Hope you have good weekend.
Cromercrab, sorry you've got SE, hope they are subsiding and you manage to get away to Cromer - enjoy! xx
Just remember if you're not happy with the info from the Reg, there's nothing to stop you hassling your consultant through his secretary 😉 Hope all goes well.
Just sitting in clinic and thought I would see onc but turns out I shall see registrar. Don't feel so confidant with him. Waiting to see whether it's time for op or more navelbine. I just have to hope he's been through my notes with registrar. I just hate the waiting and being unable to plan very far ahead 8-(
Sorry for the moan ladies xxxx
Thought I'd paste this inspirational link, again, have done so before numerous times so sorry but as it's Secondary Awareness Day. I still find it a boost.
Oh the joy of diching the "Nora Battys" Hope you go on alright.
I am feeling very sorry for myself a fte having a flu and pneumonis jab and have a ver swollen and sore arm The nurse didn't seem to think two jabs in one arm would cause a problem. Not her arm though!!
Hi Susie, I keep meaning to PM you but keep forgetting ....sorry. I am glad you are doing okay and hope you are still having cakes and coffee with Liz. I haven't baked for ages and am ready to start any time soon making cakes and bread that my family enjoy most. We didn't get to France although we had paid for our flights and the caravan has been redundant all summer. But we plan to use it to get away after my daughter returns to France....but I don't want to think of that yet! Keep well and great to read your posts as usual. Love to all, Val
That must be hard for you to be separated from your family when going through treatment. Satffordshire isn't that far from me in South Cumbria. I have managed to meet a few of the other ladies on here and will see more of them next week in London which I am really looking forward to.
I have had secondaries diagnosed since two years ago (October 26th actually - funny how these dates stick in the mind). But, I am still here, taking the medicine and living as well as possible. I am one of the lucky ones in that each of my chemos has worked for me thus far, although unlucky in that I have spread in lungs, liver and bones.
I haven't done anything with crab apples but we had an enormous crop of damsons this year and that has been enough to cope with. I have 21 pints of apple & damson juice frozen ready to make more jelly with once I have some more jars, I keep running out!
Happy jamming! Sue xx
I've seen your posts Sue, but no, don't think we have ever communicated directly! I'm about 20 months into this secondary lark, and it's been up and down but I'm still here, still feeling like "me" inside even if sometimes the outside doesn't work as well as it might.
I managed to get some crab apples from our local freecycle group so have been busy making crab apple jelly and cheese, and then another batch with added chilli - all seem to have worked well, so just working up my energy to tackle the third and final carrier-bag full.
Must have been lovely having your daughter home. My eldest is hoping to study Eng Lit at uni starting next year. Mind you, we are all scattered to the winds at the moment anyway: Our family is based in Oman, but I spend a lot of time in the UK having treatment at the Christie, so at the moment I am here in Staffordshire, my son is at boarding school about 2 hours away, and my husband and two daughters are living/working and going to school in Oman. Thank goodness for mobile phones and Skype!
Best wishes to all,
Afternoon girls, weather is miserbale here so I am catching up with what is going on.
Annie, so sorry to hear that you are in such pain with bone mets. I know how you feel as that's how I found out I had secondaries, I had terrible pain and though that I would be in a wheelchair within weeks - prognosis was awful!!! BUT.....yes, I had radiotherapy to the 2 areas of my spine that were affected and it worked! I am still taking Diclofenac and also Amitriptyline (25mg) at night and this keeps me pain free. As the others say, if you can get rid of the pain you can almost forget about the illness itself, but constant pain causes worry and wears you down. So, I am sure the radiotherapy will help.
Yes, I was on a combination of Vinorelbine and Capecitabine from last November through to April this year and side effects were tolerable, soreness to feet mainly but not as bad as it has been since I have been on Capecitabine alone since July - weird! The Vinorelbine/Capecitabine combination worked well for me. I have a scan in 2 weeks time to see if the Capecitabine on its own is till doing the trick and keeping things stable.
I have been getting twinges at the top of my left femur where I know I have mets, I sometimes wonder if it is psychological? Anyway, nothing too much to worry about at the moment.
I find baking cakes/biscuits very therapeutic. I have just made marmalade this morning so that had been quite satisfying. I have any number of other things to do but sometimes hard to get motivated.
Val, I am so glad you are much improved and hope that you have a fabulous time with your daughter. My daughter came home for a 'decent meal' on Sunday after the first 3 weeks at Manchester Uni. It as was great to see her and have some cuddles.
Hi Julie, don't think we have exchanged posts yet. I never know exactly which thread to post on as I have mets all over the place, not just bones - I am just so greedy!
Belinda, you are a star! You are always there for support. Thank you.
Hugs to you all Sue xx
We three must keep in touch more as we sound as if we have all experienced the same kind of bony problems and operations. I "borrowed" my Mum's wheeelchair but never actually used it so that is going back to dad as he keeps it in the car for her. (She doesn't go out much as she keeps refusing to go back to the nursing home afterwards but that is another story!). Keep well Julie and Belinda. I am getting so excited as my ED is arriving on Thursday. Cannot wait to see her and we have a small family get to gether arranged for Saturday with her cousins, uncle and cousins 2 children who she wants to see more than any of us! Well I did see ED when we were in France in the summer. Hugs to you both. You are amazing ladies. How do we keep so upbeat do you think? But we do. Val
Great that you don't have to wear the hideous stockings any more Val! What a relief.
Annie, I'm another one who has had a pin put through my femur, and another whose pain was not in my hip! Actually, my pain was mostly in my ribs and torso, partly due to tumours on the ribs but also because I was walking so badly I think. The main sensation I had in my leg was that it was going to give way. I wnet onto crutches/into a wheelchair for 2 weeks prior to my op, and then had it for 4 weeks afterwards too. It is lovely to be able to get out and about, so well worth it. It's amazing how places differ in their wheelchair friendliness though - I had never noticed before how bumpy the pavements are and the height of the kerbs in our town. Modern shopping areas are much more accessible!
Re radiotherapy, I've recently had three lots - palliatively to my ribs and the base of my spine, and then a single dose after my hip surgery to "sterilise" the area. I'm currently on Abraxane and Xeloda, and apart from side effects (achy legs from abraxane, sore feet from Xeloda), am now pain free.
Best wishes to all,
Hurrah you can bin the Nora Batties Val..I bought some 'neutral' pairs when I had to wear them, still horrible but the hospital had sent me home in thick white ones. x
Sounds like we have has similar problems Belinda. One good thing she said today was that as I was quite mobile now I could stop wearing the blasted surgical stockings as I have been wearing them for 5 weeks now. It was sheer bliss to remove them! Keep well Belinda. It is great to see you posting on the threads. Like your company. Love Val
Hello Val, yes it's true re knee pain due to hip. I didn't realise, just before my hip fractured fully I was walking on a hairline cracked hip and it was my knee that was so painful. I'm sorry to hear about the fracture. I had 5 sessions of rads after my op, was told it was to mop up any bc left there. My x-rays make me look bionic, I have an extra long pin going down the leg. Enjoy some lovely time with your daughters. 🙂 x
Hi Annie81, SusieV who posts on here has been on Vinorelbine and you could PM to ask her about it ( is she doesn't see your request on here that is). I know she won't mind. My Oncologist mentioned that I may be able to use it sometime in the future and I remember SusieV talking about it to other ladies.
I had an appointment with my Radiologist today and she went over my xrays after my recent op to my hip and thigh. Unfortunately when they were putting the metal pin into my femur my femur fractured at the top. It was strange seeing it on my Xray. The next step is one blast of radiotherapy from my pelvis to my knee. She told me I may fell a little more pain until the radiotherapy dies its job.
I told her my knee was painful but I had found out before my op that I had arthritis in my knee ( never knew I did as had no pain). But knee very sore since I started driving and doing more around the house. She told me that often pain felt in the knee is caused by pain from the hip! You learn something new every day!
I have requested to delay my radiotherapy until after the 24th as my daughter is coming to stay for 10 days. She said that would be fine. All in all it has been a long day. Goodnight ladies. Val
Hi Annie, I hope the rads help. I have a friend in the U.S. who has been on Vinorelbine for years now. She has lung mets and has tolerated the chemo well, she works, has early morning starts. My mobility was affected at the start of my diagnosis when my hip fractured in 2003. After my hip replacement I had 5 weeks, approx, on crutches but used hospital wheelchairs when I visited there. My husband used to steer me round hospital corridors at great speeds.
I have a yearly appointment with my orthopaedic dept to check my replacement hasn't moved, come loose etc. They have always talked about replacing the replacement (if I'm still around) when it might need changing. That's me adding the 'if' the orthopaedic doctors are always very positive.
The little bear sounds great and nice to hear you are playing 'Big Cook Little Cook.' 🙂 xx
I’ve been to see my lovely oncologist who has suggested radiotherapy to my hips and femur for the pain. He says I’ll have this within the next 2 weeks, then I’ll start Vinorelbine with Herceptin. Has anyone had Vinorelbine in the past? I believe it’s reasonably well tolerated. I’m anemic too, so hopefully when I get this resolved I might begin to feel a little more like myself. There’s a wedding I want to attend in a month’s time and I really hope I’m well for this. On the plus side being off work I’ve been able to start knitting again, just starting with a little teddy bear to practice on and my 3 year old and I made the most delicious lemon cake. My hubby’s going to hire a wheelchair from the red cross tomorrow so I can get some proper fresh air – hopefully a temporary measure. Has anyone else had their mobility affected?
I have just had 5 sessions of radio on my hip and pelvis and although before that I hadn't realised the pain was bad, since it's gone i feel so much better. Hope that makes sense!!
My cancer centre has a pain management consultant who is excellent.
Thinking a bout you all
Pat x x
Hi Annie - another one suffering the effects of ongoing pain :(. The problem is that the cause of pain can be quite different for each of us even though we may all have bone mets. I have had bone mets for 9 years now and they were extensive right from the start although pain was never really a problem in the early days. It has been the last three years that things got so much worse and I went through so many different meds, amounts and combinations but nothing has really helped. I have had rads to lower spine & hip on one occasion, then a couple of years later just to the lower spine when they found that the probable cause was a tumour growing alongside the spine which has wrapped itself around the nerves that exit at L2. I have also had injections into the epidural space with pain meds which if successful can last several weeks or even months, but sadly these didnt work for me either. As I said earlier - the problem is identifying what exactly is responsible for the pain. I find I need increasing amounts of pain meds and just hate not being able to function on a normal level - so have recently reduced the amount I take and put up with the additional pain. Sometimes it makes you quite fed up but at other times I push myself and do a lot more knowing I will pay for it !! but at times consider it worth it. I do think in other countries they have more advanced techniques than we have here in UK.
It has been good to read of a number of you on this thread getting good results recently.
Thank you all so much again for your words of wisdom. They’ve given me and my husband some peace of mind. The pain at the moment is so debilitating and the first line of pain relief (morphine) makes me feel so unfamiliar. A short blast to my lumbar spine and sacrum has been mumbled about before, so this gives me much hope. Like you Belinda, the pain almost came out of nowhere and is so severe, the thought of being in constant pain is scarier than anything else, but I feel much more confident now. I’ll let you know the outcome of my appointment on Monday. Thank you so, so much to everyone who posts. Annie xxx
I have also had radiotherapy for pain relief which has worked very well, to my hip when I was first diagnosed, and then more recently to the base of my spine. I think pain relief is so important - I was in persistent pain earlier this year which has been resolved by chemotherapy and a hip operation, and the difference in me is remarkable. I don't think I had appreciated how debilitating constant pain can be.
I do hope you can get sorted out with effective pain relief soon,
Hi Annie I had just one blast of rads to my sacrum when it was causing some severe nerve pain down my leg (the pain came on suddenly out of the blue.) This was 3 or perhaps even 4 years ago..the pain was worse for a couple of days after treatment which I was warned might happen and then the pain just vanished and has never returned.
Oh I forgot to add that Radiotherapy has helped me with pain in the ribs and sline. Not weeks of treatment but short blasts. It took a few days to notice the improvement but it did work and I have an appointment on Monday with the Radiologist to see if any radiotherapy is needed after my recent op. Discuss it with your team but it certainly helped me in the past. Val
Hello Annie, Yes I am an expert regarding pain. There are lots of good meds you can get to help. Do you have a Palliative Care team at your hospital? I was referred to them by my Oncologist a couple of years ago and have been to see them recently too. They really know about all sorts of things and juggled my medication and that made a HUGE difference. For instance my Gp was giving me diclophenac but they changed it to slow release 75mg twice a day instead of the normal tablets. They also gave me Gabapentin for nerve pain. (They gave me a tens machine but I never need to use it). I have also been given patches to put on the painful areas called Lidocaine.
I am not on all these tablets now and am back to my normal meds since I got out of hospital after an op last month to put pins in my thigh and hip. I realise this is far too much information but what I suggest is you ask if there is such a Pain Specialist in your area. If I can answer any other questions please feel free to ask. I have been dealing with bone mets for 12 years so know all about the aches and pains. By the way I am pain free at the moment and feeling well. Hugs to you, Val
Sorry to hear you're still suffering. Does heat (pads, baths) give you any relief? Accupuncture, meditation?
You've probably tried them all but sometimes worthwhile thinking about supportive things that go along with meds...
Thanks for your support everybody, you’re all so reliable. I’m in quite a bit of pain taking Morphine Sulphate MXL 30mg twice a day, plus Oramorph 3 or 4 times throughout the day. Also regular paracetamol & diclophenac. I’m flat out, spaced out and still not really comfortable, pain mainly in my back and hips. I know that if I could get on top of my pain, I could deal with everything else. Does anyone else have issues with pain? Does anyone have any tips? I wonder if I’ll have radiotherapy for pain – has this been effective for anyone else? My cancer is ER PR –ve, so I get to escape the joys of tamoxifen and the like.
With you on the head out if the window! I'm still sporting the full Kojak but the kids passing on the way to school think it's funny 😉
Sorry to hear your news Annie will have you in my thoughts. I too am finding I am very stiff after sitting down but it does wear off when I have moved a round for a bit. Will certainly try the toe thing and see if it helps.It's a good job I love alone as I shriek when i get out of bed in the night ot stick my head out of the window to cool down from the hot flushes!!!!
Love Pat xxx
Thanks Belinda that's exactly the problems I have got, although I had them with tamoxifen, they seem so much worse. I will try the exercise. I have noticed my knees feel alot worse!!
Thanks again Mandy x
Hi all, Annie I hope you find out quickly the reason for these suspicious blood tests. The waiting is just awful. Same for Val on Monday, will we ever get used to this waiting for results? 😞
iamok, I had similar on bisphos and Arimidex..(and Tamoxifen, just remembered) I didn't take any supplements as I wasn't convinced any of them would work but perhaps others know of some helpful ones. I did find my side effects got better over time..or maybe I almost got used to them??? I was always worse after sitting still for a while and could walk some of the stiffness off. Before getting out of bed in the mornings I found pulling my toes upwards, for a few seconds, legs straight helped. It's an exercise that's been mentioned on the forums before. As I especially had ankle stiffness I found it really helpful.
Annie send you a big hug, hope you feel better when you get a plan x
Glad to read others are doing well and congrats tothe 'stable Mable's '
Sorry I don't post much but I do catch up everyday and get a boost from your posts
Looking for some advice, now on zometa, letrazole and iv biophosphates and really suffering with SE.
Too many to moan about LOL, the main thing that is getting me down is stiff painful joints, can any one advise me of supplements that are safe and have helped???
Thanks Ladies have a lovely weekend x
Hi Annie, Sorry you are in a dark place right now. we know just how that feels so understand what you are dealing with. Its not easy and its a bit of a rollercoaster ride at times. But often things are better than we think they are and you just need to take a deep breath...we are here for you and I hope once you see your Oncologist next week you will know a bit more. I am seeing my Oncologsit/riaotherapist on Monday. Its the waiting for results I hate most. Once I know what I am dealing with I usually feel a bit better. I have had bone mets for over 12 years so know how difficult it can be at times. But keep in touch and we will help you through the dark days. I log on most days to see how everyone is doing. Love Val
I know you're worried but keep breathing and try to stay in the here-and-now. I work with livers as a Clinical Nurse Specialist and believe me, liver function tests (LFT's) can be raised for all sorts of reasons.
Sometimes people can run with raised LFT's and that's just normal for them. Today, one of my liver enzymes was raised but I'm putting that down to chemo. In themselves they can be an indication of change but not always significant. (I have liver, lung and spinal mets).
For a definitive result, you will need a liver ultrasound to rule out mets. Sometimes any spots which appear can be cysts so a US is needed to check things out.
Love and hugs,
Hi ladies, mets it now in spine, ribs and skull. Plus my blood tests show a suspicious liver. I’m going to see my onc next week for my plan and I just need you all to tell me it’s going to be ok. I’m in a pretty dark, sad place.
Thank you all - it really is such a relief as I'm sure you know if you get the same results. Belinda - I didn't quite burst into tears but nearly hugged my Onc, which would have been quite nice 😉 Even though he had been insistent that I was OK I do know he hasn't actually got Xray eyes so can't actually see what's going on inside me! Now onto pursuing Cyberknife as I only have 2 areas of mets, will let you know how that goes in due course, not holding my breath though.
wow! i am really pleased that i came on here tonight as so much good news for you ladies and to read that a few of you are now stable is so good! I am so happy for you.
Thanks Dawn and Lizcat for the useful info about Zoladex, it is much appreciated. I think it is probably best to keep to monthly then.
Thanks belinda for the link - there is so much to take in isnt there.
Agree it's fantastic news and again, thanks to all of you for your
advice and encouragment. i am very positive about it all but, to know
that you are all doing so well realy does make it easier.
Love Pat x x(Trash)
Fantastic news Nicky - so pleased for you. It must be especially good news with not having had a scan for 2 years too. May it continue like this for many years to come for all of us.
Well done Nicky, glad the scans went well. Hope you can let your hair down over the weekend to celebrate the good results. Phew.....Long may it continue. LOve Val
That's great Nicky!
Always so nice to hear good news on these threads - thanks for sharing with us & long may your stability continue!