I am new to this.. was told yesterday that I have some spots on my liver and on my spine and pelvis. I hurt my leg back in Oct which they said was a muscle strain, I then fell 3 times in the next few months and the pain increased. They suspected a fracture of pelvis which turns out was true but only because a spot of cancer was on the bone and had weakened it. I was on tamoxifen although was having a few weeks off.
I only finished Herceptin last Feb (I am triple positive) after single mastectomy , chemo FECT and radio and petumazab. They think perhaps it was there all time but so small no one could see it on scans but since treatment ended its started to grow. I started to feel a little bloated on and off the week before xmas but have had IBS in past so just presumed it was an attack.
Not sure what to expect - v scared . any positive experiences out there please .
My hospital decided to try getting patients to do their own denosumab injections at home, it was to be delivered to my home. I was not keen and asked if my GP practice could do it but was told they were not licensed to do it. So much for care in the community! Have not heard any more. Usually it doesn't take very long and when my hospital appointments were quite spaced out it was quite reassuring to see a nurse regularly. I am going onto 6 weekly injections now to coincide with capecitabine appointments.. Had a lot of bone pain after last injection so am pleased they will be less frequent.
Sorry you have to join us but you have definitely come to the right place for support and to ask questions.
I have been an active member of the secondary forum for over 10years now and I must say in all that time I’ve not heard of anyone having their sternum removed. There have been other surgical bone procedures such as hip replacements but not the whole sternum. Obviously there must be someone out there who has had it done but no-one has posted on the forum as far as I can remember. Therefore you may not get any advice as we tend to give it if we have experienced the same.
I would get a second opinion, you’ve got nothing to lose and maybe find out if there’s a specialist surgeon who has done this before. I recently had liver surgery and was very grateful for the fact that my surgeon (at my local hosptial) is one of the leading abdominal cancer surgeons in the county. It gave me great faith in his abilities and trusted him with his opinion about my particular case and recovery times etc as he has done the same surgery many times.
In terms of survival rates whether you have surgery or not it is of course impossible to answer. Having said that I have had no surgery or radiotherapy to my bone mets in the time I’ve had them and although they are now more wide spread than they were they have never caused me any issues or pain - and I’m still here!
Sorry I can’t be of more help, maybe someone else can. Good luck though with your decision and let us know how you get on.
Hi All - I'm new to this and would like to pick the brains of all of you amazing ladies.
I was dx with BC in April 2018 and two weeks later an MRI scan and PET CT scan showed I had a solitary secondary bone met lesion in my sternum. I had chemo (FEC-T) followed by lumpectomy (x2) to remove primary. I am currently on anastrazole and zoladex (goserelin).
I have been told by the relevant surgeons that I am a good candidate for sternum removal (and rebuilding) but my oncologist is not keen. I still have to have RT and my oncologist said palbociclib is the next stage of treatment. I am at a cross-roads because the option to have the surgery is purely down to me and as I am a rare case there is no literature to support whether removal slows down progression of the disease. I am 47 and want to give myself the best shot but it's a massive surgery and will take months to recover from.
I'm going to ask for a second opinion on this from other oncologists.
Has anyone else been in this situation? I would love to hear from you. Yikes! What do I do?
Riversidedawn, my hospital recently changed to giving Denosumab 3 monthly, saying it stays active in the body for such a long time, the Maxillo Facial team I see also agree with this, obviously they are concerned re jaw issues. Both teams say it stays in the body beyond 3 months and my dentist says he’d be surprised if it didn’t stay way beyond that! I was told later results agree with this and extending the time between doses reduces the risks of onj. When my hospital protocol was monthly my Oncologist always said not to worry if I went 6 weekly or even missed a dose, so assume they have always known how it stays in our systems.
Could you ask to adjust the frequency to fit in with your other visits? Kate x
Wow, Riversidedawn, that is a long time for just a quick injection. As the other ladies have said you could ask if your GP will administer it but unless the nurses are trained I don’t think they can. I have had Denosumab for nearly 6 years now and have had it at varying intervals depending on the other treatment I’m on. At present I have it 4 weekly along with my fulvestrant but have had it 6 weekly. If I’m continuing on fulvestrant (after I find out my recent scan results) I am going to ask if it can be 8 weekly. Each time I go for my injections and port a cath ‘flush’ I’m in and out within 30 mins give or take 10 mins, waiting around for 3 hours is awful so I don’t blame you trying to find out how you can get it done more quickly. I don’t think oncologists, or chemo nurses, understand that once we have secondary BC we are spending too much of our valuable time in a hospital so want to get out ASAP!
Hi. I am on denosumab. I get my injection every four weeks at hospital when I am picking up my palbociclib. I can be in and out in 20 minutes but sometimes there is a glitch with the prescription or no room available. I have asked if I could have it done at the GP but was told as it was a relatively new drug it was to be administered at the hospital. I don't always see my onc when I am in. If my bloods are OK I get a phone call the evening before to ask how I am doing. I have the option to see him if I want to but much as he is lovely and very approachable I prefer not. I find it is the best approach for me at the moment.
I have Denosumab every 4 weeks at my dr's surgery. You should ring them and see if there is a nurse trained to give the injection.
A Happy Christmas from me as well 🎄🎅🏻Wishing you a lovely time with your family and friends.
Hello, i just wanted to wish you all a happy Christmas and positive scan results for the new year
Big hugs to all
Some people have an allergic reaction to one type of chemo but not necessarily another. There is another taxane, docetaxel, which works in a similar way but doesn’t necessarily mean you would react to it in such a bad way. There’s also Eribulin which is completely different and is well tolerated plus of course Capecitabine. Some of these other chemos can’t be given until after another one has been tried. I’m sure there is one (there are more than these I’ve mentioned) that will work effectively without the distressing side effects.
Jayrand56, About 4 1/2 years ago I had been on gemcitibine for about 10 months. Hubby and I HD gone away camping for the weekend. I was fine Friday when we left. I woke up Saturday morning extremely short of breath. I couldn't even walk a few feet to the outhouse. I was out of breath even putting socks on. We were due to go home Sunday. We packed up to go home and when I went to hug our friends bye we were all crying. Everyone thought I had taken a turn for the worse and that this was it, including me! I had never been that SOB with my lung mets. Monday morning I called my oncologist and he had me come in right away. They scanned me and there was no change in my cancer. I had pneumonitis. Which is inflammation all the lobes of the lungs. He took me off gemcitibine and all treatments for a month. I had to go on O2. In about 3 weeks I was fine, but my run with gemcitibine was over. FF
Just a lil' question...my onco. never uses tumour markers as he does not believe in them.....may i please have your feedback on this one?
How many of you feel supported in between scans?? I believe there is work in parliament on raising the care of 'all' secondary cancer patients.......not very festive...ooopsie..xx
Hi Magick and Butterfly
Welcome to the forum. I had primary bc in 2009 and was treated with radiotherapy and tamoxifen. 6 years later mets in my pelvis and skull were discovered during an investigation for something different. I was treated with exemestane which worked for 2 1/2 years but I'm due to start capecitabine after Christmas. I had some difficulty persuading my consultant that ex wasn't working any more. Lots of women have the same problem. We know our own bodies.
You mums are lucky to have your support
Butterfly, Welcome. The good news is that it didn't come back for 10 years! This might mean that it is slow growing. I went 10 years and then it showed up in my lungs.I have been here 13 years with it in my lungs.
Best wishes for your mom! FF
Hello Silver, It’s lovely to hear from you! Sorry to read you’re still in pain but so pleased about your biopsy result. I hope you have a much better year ahead, don’t forget to let us know how you’re getting on. Very best wishes, Kate xx
Merry Christmas to you to Silver, i do hope your pain subsides, i found gabapentin works well in lrge doses, and morphine excellent into the vein, but no joy from morphine by mouth or patches.i was wondering if the new cannabis oil would help you, it is available on prescription now i believe. you have all my sympathy, constant pain takes up all your energy. thinking of you.
..dear funny/f........just lovely to be understood, albeit from afar........even my oncologist shows no empathy......where does one go? Thank goodness i've a super rheumatologist.....xx
Merry Christmas Silver! Hoping your pain regimen kicks in and makes you more comfortable. I think when we get other things wrong with us along with already having cancer we get overwhelmed. I find drs and friends don't understand it. You tell them you have arthritis and you can tell that they are like So does everyone else! Yeah, but we have cancer, plus side effects of treatment and other things. Grrrrrr! But somehow we still keep going! FF
To dear Kate21; funnyface; rosie53; bonariensis; Anne30 & ramade.........& anyone else I've missed.....
Just popping by to wish you & yours a very Happy Christmas and a safe, happy, healthy 2019!!
My oral biopsy came back as hyperplasia...so missed the bullet but they are going to be vigilant......
I'm still in a lotta pain, but I'm now on Morphine and Gabapentin.
Inflammatory arthritis just kicked off in my small joints...nae gr8 timing.......but hey ho....ho, ho, ho...here we go....
Love & all good wishes to u all....