I was dx with a bone met at original dx in Oct 09. Recently I have been shamelessly picking the brains of other ladies with bone mets wherever I find them, and have found the process very helpful and often encouraging. It has enabled me to be less panicked about my prognosis, and given me a much better understanding of my condition. I now have a whole new set of questions to ask at my next consult - bet my onc can't wait!
I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought - so if you agree and also have bone mets perhaps you could check in here and we could get the process started. I know it's a bit quiet at the moment, with many away on holiday - but here goes .....
I completely understand your worry. When I had FEC last year I had to take a break between my treatments of 3 weeks whilst my blood counts settled down. Nothing had happened in the way of progression on my scan taken after this break so have hope and try to not get too anxious. Big hugs xxx
Thanks for that info ,i shall look into it and i see bcn plus oncologist next friday and will mention it to them ,although i did three weeks ago and onco said yes 2 hours each time to make sure i have no reaction,plus i did ask nurse and my own gp ,but all gave the same answer ,the only one that differs is a bcn from city hospital and she said the time had been cut to i hour,so will let you know how i go on as i can not see the point as have had 11 infusions of herceptin and perjeta ,but perjeta taken off me because can not take it with chemo tablets ,so had one injection in hospital and one at home but viewed for two hours ,quite frankly its a pain in the bum.
Just a quick post regarding your Herceptin. When it was changed from IV (needing 90 mins infusion time) to a subcut injection (taking seconds to administer) all ladies had to be observed for 2 hours after the first injection. My friend who had been in the IV version for over 15 years still needed to be watched for any reactions after she was changed to the subcut injection. However after the first one and assuming there are no reactions you shouldn't need to be observed. If they tell you otherwise maybe you can ask them why? When I was on Herceptin and Pertuzamab, both IV infusions, I went online and checked the guidelines for infusion times. I had to tell the very experienced chemo nurses that both could be given over a much shorter period of time than they were giving them to me. Once they checked with pharmacy they agreed. They weren't happy initially as I was telling them what to do but it literally saved me hours at the hospital every 3 weeks.
Can anyone offer any advice please? After several treatments I am now on Paclitaxol. I have had one course out of six, feeling ok but have now developed a tooth infection. I have potential ONJ so the tooth cant be taken out and I am on antibiotics yet again so the next course of chemo is being delayed until the infection clears. My question is, does it matter if chemo is delayed by a couple of weeks? I am really scared that it is going to run rampant during this time. Has anyone else had treatment delays? Feeling really low at the moment and need advice and reassurance. Thank you. Nanofthree xx
Thnaks for reply ,i will take her up on the offer ,it just made me think ,am i worse than i feel?,but the other nurse i have to cope with as long as on herceptin ,as apparently thats how it works ,a nurse monitors you for two hours after every injection so every three weeks,but to be fair she was very nice ,even offered to do some household chores for me if i so wished .
Glad you have finished your rads and hope the side effects wear off soon. I would take up the offer of a MacMillan nurse. They know and understand and will speak up for you if needed. And you won't have to sit with her for 2 hours!
Hugs Bon xx
yes had my doctor today for review and she said exactly what you are saying ,also told me she is leaving the practise ,not good news but will have a new face in two months time,
she also asked if i would like a MCMILLAN NURSE ,i did not know what to say as dont know if thats good or bad ,so have to think about that ,it has never been mentioned to me before so dont know what to think,
any answers gratefully appreciated.
take care reneex
FF really exciting. It's all the waiting ha ha. I adore my grandchildren and they really lift my spirits. I've had extreme pain these last few weeks. I often sleep in our recliner and it doesn't touch the pressure points. Getting into bed and trying to find the one position !!! I'm on a much higher dosage of morphine and nerve blocks. It's because my lower left rib has squashed nerves. Also I'm having radiation on the area next week. I asked for I've never been informed about this option it's only being on the forums that I knew about it. Disgusting really, I think I'm getting so angry because this scenario and many worse things have happened to me and it's only cos I had knowledge about certain things. I'm thinking of creating a leaflets for people diagnosed with bc and MBC. A good idea?
Hi Carolyn, yes my CT is of a similar time mine is the 27th, see onc for results the following week so not too long a frantic wait!!!!!
Letrozole hopefully still kicking the big Cs backside 👊
FF, glad to hear you managed a decent nights sleep, I always think you can deal with most things if you have had a good night's sleep!
Take care ladies Hugs Janette xxxx
Thanks ladies for holding my hand. Last night I decided to be brave and try to sleep on the sofa. I took my muscle relaxer and my pain pill, waited 30 minutes and gave it a try. I was able to do it with only a few twinges of pain getting comfortable. I slept 5 hours with no pain!! Then it was time to get up. It was a slow process, but I did it all by myself. When I would get pain I would stop and relax. The good news was these pains were quick and sharp but nothing like the ones I had been having! I have another chiro appointment tomorrow. Hoping this one will be the last one. FF
Hi ladies, not posted for a while been taking a little step back but have been reading most posts.
Funnyface, I had to jump on to congratulate you on your forthcoming grandchild, so pleased for you. Sorry to read about the horrible back pain you have been struggling with though, hope it soon settles down.
Nicky, congratulations on becoming a grandma/nana, I am so looking forward to having grandchildren but can't see it happening anytime soon!
Hi to all the other boney ladies old and new, hope you're all keeping well and warm now the weather is changing.
Hugs Janette xxxxxxx
nice to hear from you although not in a perfeect situation ,but at least you know what it is and that must be a relief for you,so carry on with the treatment and you will soon be good to go again.
i have finished my rads last friday and since felt lousy ,so tired i could sleep on the clothes line ,plus this horrible nausea to deal with which i am hoping is from that ,
keep you chin up girl .
Thanks you so much about your kind and tender support. At least I know now that it is not that horrible. However I am going to have a word with the oncologist first to see why does she think I need that treatment at that very moment. Hugs to all.
Averlia, I'm sorry to hear about your second cancer, but glad surgery could fix you up. Thank goodness you don't have to add more chemo. I don't like radiation. I've only had it for 2 weeks to shrink a tumor that was closing off my bronchus and had collapsed my lung. I got pneumonitis from the rads and landed in the hospital. The swelling of my lungs lowered my O2 levels which made my heart beat rapidly. The heart not beating correctly then made my O2 levels go down more. I was in a vicious circle! Rads scare me now! After all the problems healed I did have great results. My lung reinflated!! Yes, I would do rads again bc of the benefits.Best of luck. FF
I made a post about my back but apparently it is out floating around in the world. Thank you for your concerns and the congrats that you have sent for my granddaughter. It is not the spot of cancer acting up. I have a dislocated rib, pulled muscles, tendons or ligaments.I 've hurt my back before, but never the pain I was getting. I'm on muscle relaxers and oxycondone. Monday night I slept 9 hours in a row in a chair. I haven't slept 9 hours in many years. Yesterday, I went to the chiropractor and going again this morning. Today after chiro, I'm going back to work. My back is tender when sitting and walking. The muscles are sore after all the jolting and clenching pain. I slept in the chair last night again, bc I'm afraid to lie down.That is when the pain hits. I'm going to give it a couple more days before I try my bed again. I probably won't post much for a few days because the muscle relaxes knock me out. Hugs! FF
Ff, how are you? Are you out of hospital and out of pain now? Do let us know, I'm thinking aboutyou, you're such a trooper!
Hi all, I said I would report back on my spine radiotherapy. Now nearly 2 weeks after it I feel great, I was put on steroids for a while but off them now. I am now in no pain. Looking back I don't know how I carried on with th amount of pain I was in for a year. I am now back on chemotherapy. Good luck to you all whatever your decision about this, mine wasn't an option as it was starting to infiltrate the spine.
love to all as ever
hope you are feeling well after the op.
i've got mets on my spine and pelvis and in the summer my onc sent me for some radiotherapy. I honestly didnt think I needed it and as it's something that you can't have indefinite, didn't want to 'burn my bridges'. Anyway, had 5 sessions and has to be said have been great. Felt a bit uncomfortable during the treatment but once i did the sessions it has improved a lot and made me realise that I was in more pain than I thought.
you have to do what feels right for you so don't let anyone make a decision for you
I did not post here for ages and did not read to be honest, I think I only come back when I am feeling low and do not know what to do, quite a selfish thing isn't it.
I apologize, but probably some of you have felt the same way. I hope you are all fine.
Here is my small issue now:
I have been feeling ok, apart from my continuous bleeding dow there, so I continued insisting to be checked up and finally I was diagnosed with another cancer, this time endometriosis one, as if the other one is not enough. Luckily this one was a primary not invasive. I had a total histerectomy last week as they said that this is my only choice to have this one cured. No treatment needed afterwards. Now I am recovering. However my oncologist is not happy with the response of the bones so she wants me to have sam rads on my spine. I do not feel any pain at all and I am not sure I need that. I am so scared that after a radiotherapy I will start experiencing pains and I just do not want them, or at least would like to postpone them as long as I can. I know that I am selfish but I would highly apprecieate if you give me any kind of advise or share with me similar stories. I know that I will have to make the decision myself but yet, would be eager to know what you think.
sorry about your back problem ,i have three ruptured discs ,do you think another one has gone as is quite possible and no other pain like it ,so i feel for you ,,hope they sort it and soon .
Back pain is dreadful. I know. You shouldn't be surprised that it hurts so much when you are lying down. Everything seizes up. When I had a ruptured disc the pain was often worst at night. That's when I needed painkillers the most. Hope they find out what's causing the pain as soon as possible and can kill it.
Lots of hugs Bon xx
Lovely news ff, a real pick u up. Great having the birth to look forward to and just after Christmas is a great time so you can avoid that winter blues feeling.so pleased for you, hope you are well.
Bad night! I've been having back problems. Saturday night I slept in a chair, last night I tried to sleep in the spare bedroom. BIG MISTAKE!! When I lie down my back starts with spasms. They are stabbing, jolting an crushing. They take my breath away. Hubby was upstairs with the door closed. I barely got hold of my cellphone and called him. He didn't answer. You could drop a bucket of ice water on him and he would still sleep. I almost called for an ambulance myself, but could hardly get any words out of me. I managed to call hubby again, this time he answered. I screamed help and he knew I was bad. We tried for 45 mins to get me up. I was on my side and couldn't even get up on my elbow. Hubby would have to p read on my back every time I got a spasm. We ended up calling an ambulance.Hubby applied pressure to my back and the 2 other men pulled me up. OMG I will not be getting back in bed for quite a few days! I don't understand why this jolting crushing pain happens when I'm laying down. I can be perfectly still and it keeps happening. As soon as I'm out of bed it stops. My back was tender to the touch after this episode. But no more jolting pain.Sitting here waiting for the doctors office to open.I think I must need something for inflamation and a muscle relaxer. I want a MRI and if everything is OK an appointment with my chiro. I did read that repeatable can cause back pain. BY the way my finger nails have got thin and tender. So look much fun. FF
Yay FF, congrats and enjoy the shopping. We have just welcomed our first grandchild, a boy, a month ago. Never thought I'd see the day, when I was dx with bone mets 9 years ago, so it's extra special. The cuddles are lovely so you have plenty to look forward to.
ps hi to all other boney, and other, ladies (and gent!). Hope everything is going well with your treatments, I've just had good news from my latet CT scan showing that Eribulin has knocked back the liver mets to a single one now and all bone mets are stable or healing. Phew, scanxiety over for a while.
you will never ever have any spare cash again as all will be spent on this lovely child
best wishes to you and yours
Jobey my first baby was a 10 lb baby was presenting one foot down and one foot up. He was that way for weeks. They said no way, that I had to have a C-section. Lol he is my skinnest one now!
Congratulations!! My first grandbaby a little girl is arriving on 18th of this month!! She's breech so coming out of the sun roof which is why I know for certain when she's going to arrive! huge excitement here in anticicpation , can't think of her without welling up so god help me when she's born!! 💖💖
I have some SECRET news! For those of you who are friends with me on Facebook, I have sent you a private message there. This may not go on Facebook or I will be disowned! I'm going to be a Grandmom in January. I will be shopping soon for a tutu and ballet shoes. Soooooooo stoked! FF
what a fantastic pic i do hope you are going to frame it as something you may never see again so clearly and well woth keeping,thanks for sharing it with us .
we have country file on tv and they ask for unusual pics for their country file calendar ,,,sure this would win it ..
Did anyone see the harvest moon last night? My daughter took this picture of her children looking out across Start Bay yesterday evening.
Love and hugs to all. Bon xx