Silverlining,
Even we ( mum and I ) are from czech republic, inbetween scans is not a really support. Mum has got me, who goes with her, does silly things make her smile and study internet to have at least some answers for her questions…bit sad, that the system as soon as they have not tax paid from you, they somehow quickly forget that you was here for the system for many years…make ne angry, system sucks???
I need to deeply apologise, my message was for Silverlining, not Bonareis.
Bonareus, so happy, you do well and all is stable! Thank you, that you have been here for us with all your support. May i kindly ask you, what you having for problems, insurence in UK ( i asume you are from Uk ) ??
I don’t know if this is the right thread to ask, but does anyone else have experience of a bad reaction to Paclitaxol? I have only had 2 weekly doses, but each time my breathlessness has worsened. Onc thinks it may be the chemo side effect.
I am currently house bound as any exertion sets me off. It is possible that they will bring me in to the ward this weekend to scan for possible clots.
If I have to stop the Paclitaxol, I’m worried that there won’t be anything else for me. I have lungs mets and bone mets on my sternum
Hi. What medication are you on to stabilize your lung tumors?
I’ve just started weekly a Paclitaxol and also will have bone strengthening injections monthly
Thank you for your replies. I hit a wall yesterday when the onc told me I may not be able to tolerate the Paclitaxel; overtired, oversthinking and just plain fed up!
Today I have pulled up my Big Girl Pants and decided to look forward to seeing my gorgeous pocket rocket grandson tomorrow!
In the meantime I am working to manage my breathing and bought a v shaped pillow to help at night. Part of the problem is that my husband works away Mon to Fri, so the nights alone can be scary. He is now home until New Year. I understand now that there are alternative chemos I can try if this isn’t possible. Thank you all, you are a lifeline.
Hello, i just wanted to wish you all a happy Christmas and positive scan results for the new year
Big hugs to all
Ramade
Christmas wishes and good luck to all . Here’s to a great 2019xxxx
Wendy x
Happy Christmas to everyone and thank you for all the support and encouragement. Here’s to strength and peace in 2019 x
Hi is anyone on denosumab? I have to see onc every four weeks to pick up ibrance (palbociclib) and also return every 6 weeks for denosumab. Never get out in anything under 3 hours even when it’s just a quick injection.
My GP won’t fund ibrance so that’s fair enough but I wondered if GPs will do denosumab or if anyone is trusted to do it at home? Really don’t want fortnightly hospital trips.
I am on Ibrance and Zometa and Anastrosole. I have Zometa every four weeks and also have to see the oncologist every four weeks to get the Ibrance. I’m one a low dose and one week on one week off as my white cell counts are low. Often the appointments don’t work out to be on the same day so I have to go consequtive weeks. It is time consuming but the hospital is near my work so it’s okay. I haven’t heard of anyone having it at home but this is the right place to ask. Could you try and have both on the same day? I sometimes can which is good. Best wishes Anne
Just joining in for a bit of support. I was admitted onto the oncology ward on Boxing Day with a chest infection; I already had breathlessness which had been exacerbated by the Paclitaxel so not good!
I’m having IV antibiotics and steroids and feeling much better, in fact there is some suggestion from the CT that there has been an underlying infection for a while.
Not sure if I will be allowed home today as there is talk of a chest drain, despite my consultant saying it wasn’t necessary last time I saw her.
Feeling a bit fed up, and trying to convince myself that next Christmas will be better…
Lovely good evening,
I wish you all clean scans, good fight, stay strong and positive in the upcoming 2019.
Hugs???
Hi Riversidedawn
I have been on Denosumab for 5 years, it was licensed in late 2012 & I was put on it when diagnosed Dec 2012 so GP saying it’s a new drug isn’t quite true. GPs don’t tend to administer it because it costs too much, I was told £150+ per injection back in 2012!! Having said that, my local hospice will give it & I know someone on this forum who self administers at home. My chemo unit & onc are very flexible as to when I get Denosumab-they tend to tie it in with whichever chemo I happen to be on so I have had 4 weekly, 6 weekly , 8 & 12 weekly. All the best with your treatment.
Helen x
Correction! Been on Denosumab for 6 years not 5!
Yes I wish everyone here a happy new year with good results from whatever scans/ tests and good responses to whatever treatment. May this be a year of success for all.
Next Christmas it WILL be better!!
Next Christmas it WILL be better!! Jayrand56!
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?
xxx
Morning all
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 .
thanks
x