62394members
295online
328351posts
Turn on suggestions
Auto-suggest helps you quickly narrow down your search results by suggesting possible matches as you type.
Showing results for
- Home
- :
- About Liz_nz
Liz_nz
Member
since
12-10-2015
17
Posts
2
Hugs
20-05-2019
02:01
I have extensive bone mets and been having zoledronic acid every three weeks, but now I’m starting to get lower jaw problems so my oncologist has taken me off zoledronic. I’m trying to find out is this means the bad nine pain will come back. Has anyone been on zoledronic and then come off? Did your bone pain return? Thanks for any feedback Liz
... View more
20-03-2019
04:56
Hi im stage 4 Her+ breast cancer diagnosed in 2014. I’ve been having 3 month CT thorax, abdompelvuc scans with oral and IV contrast. All have gone well until my Dec 2018 scan when the IV contrast didn’t seem to have gone into the vein. The hospital gave me a sheet about extravasation. There was no pain, swelling or redness. Shortly afterward my oncologist called to say there was insufficient detail on the scan to see what was happening with the cancer. We agreed to do another scan in 3 months. i had a ct scan yesterday and told them about the extravasation last time, so they took extra care with the cannula and injected the dye slowly. The radiographer came out to me during the scan and repositioned my arm before continuing. Once again no contrast was showing in the image. Another radiographer was called, he checked the cannula and my arm. The cannula appeared to be ok and once again no pain, swelling or redness. Im really worried where this contrast is going and what is the impact on my body and also if they can’t get a decent image how will they know if there is progression. The radiographer said he hadn’t come across this before and whilst honest, it didn’t make me feel better. Last night I resorted to .Dr Google, but I couldn’t find anything remotely like this. i guess I’m just looking for some explanation or to know that someone has seen this before and that I’m ‘safe. Sorry if I’m being a drama queen 😞. Any and all advice suggestions gladly accepted. Liz
... View more
31-12-2018
01:33
I’m on 3 weekly zoledronic acid, pertusamab and herceltin. I was tried in Denosumab but was allergic to it. I found the pain started to ease after awhile but ?I still have bone pain due to the mets. There isn’t any reason to stay in pain though, various meds can really help. If you haven’t bonded with your macmillan nurse, speak tou your GP or oncologist, or even the nurses on the day unit ward. All of them have been very helpful for me. You certainly are not alone and there are so many support organisations that .im sure there will be someone local. Breast Cancer Care do local sessions where you can meet others living with cancer and they provide some great information. i hope you can find some local support and relief from the pain soon love liz
... View more
22-07-2017
07:05
Thanks for your feedback, it feels better knowing it not just me. I am having a week off work, and see how I feel after that. once again, thank you for your feedback. liz
... View more
18-07-2017
01:46
I was diagnosed in Jan 2015 with HER 2 stage 4. I am now on Herceptin, Pertusamab, Zoledronic Acid every 3 weeks and Letrozol daily. Ive had fatigue for a while but in the last couple of months it really seems worse, I have no energy to do anything. I'm not tired as such, just can't motivate myself to even do things I love. Walking to the kitchen to get a drink is sometimes too much effort. i do an office job full time and seem to be able to push myself mentally there, but outside of that... nothing. I can't figure out if I'm just becoming very lazy, of if this is really how I am now? Does anyone else feel like this? Do you have any suggestions how to deal with it? I'm completely at a loss.thanks for any input. Liz
... View more
16-06-2017
06:05
That is fantastic news. I'm on perusamab, Herceptin, zoledronic acid and loperamide now but my oncologist said if there is a change kadcyka would be the next move for me. this has really made my day bright, thank you for posting.
... View more
01-06-2017
05:40
I don't have any advice or feedback to offer, just sending you a big hug X
... View more
11-05-2017
05:32
1 Hug
Hi, I've been around the block a few times so not a young 'un. I have secondaries in my liver and they scare me a lot, however they have behaved well over the last 2.5 years. The white if my eyes sometimes takes on a yellow tinge, but my liver blood tests are still looking ok. other than my regular treatment, nothing special has been done about my liver mets hugs x
... View more
11-05-2017
05:25
I will apologise in advance if this sounds like a rant. im stage 4 BC HER II diagnosed Feb 2015. I have continued full time work while having Herceptin, Pertusamab and Zoledronic acid every 3 weeks. During my early chemo with Abraxane I developed horrific peripheral neuropathy but it settled down to just being a major pain in the bum within the year. niw my condition is stable but I have more fatigue than ever and over the past three weeks my workload at the office had got heavier and heavier. So I'm a bit stressed too. Ive read that excersize is helpful but the neuropathy makes it painful to walk far (I have recently got a mobility scooter) looking for suggestions I can fit into my life please. How can I get ride of this fatigue and get some life back?
... View more
08-05-2017
12:58
Need to add, initially I had joint pain when I first started having it. It does ease up though.
... View more
08-05-2017
12:55
Sorry to hear about your Mum. I was diagnosed in .Jan 2015 with SBC with mets to liver, left lung, and most joints and ling bones and various in spine. I am on biophisphates called Zoledronic acid by IV every 3 weeks and it really helped to stop the bone pain. I still do get pain but not as bad. It wold pay to have a dental check before starting with the biophisphates, because it can impede dental treatment. best wishes x
... View more
03-05-2017
08:55
Hi, I was diagnosed as stage 4 in January 2014 and at that time had a very busy role involving global travel. I have extensive mets in all long bones, both shoulders and hips and spine. I went back to work full time but with reduced (almost no) travel. My firm have been great allowing me to take time off for treatments etc. i take Wednesday afternoon off each third week for chemo (Herceptin, pertusamab, zoladtonuc acid) and 3 monthly heart and CT scans. The two biggest issues fir me are bone pain and fatigue. I'm using paracetamol, codeine and oramorph to control the pain, I try not to take too much because it makes the fatigue worse. when I developed really bad left hip pain my oncologist arranged for me to have a single shot of radiotherapy and that really helped. In terms of the fatigue, I do nit have it under control at all, and sometimes find myself just sitting and being too exhausted to walk to the kitchen to get water. Like you, I don't want to stop work but some days it's a really bug mountain just to climb out of bed. On those days, I try not to do anything That isn't necessary. hoping you don't get hit by the fatigue and my advice is to get pain medication that works for you Liz x
... View more
03-05-2017
07:58
I have only posted a couple of times but really need advice on neuropathy. it started in my hands and feet back in 2014 when I was on Abraxane and it is still just as bad today (Herceptin, pertusamab and zoledronic acid). My finger tips are quite numb some times and it's a bit like I've had an injection at the dentist up to my wrists. My feet always feel they are burning, Pins and needles and shooting pains up my legs. It goes up to about mid calf. walking is painful and makes it difficult to walk far. It also affects my balance I can be standing still and then suddenly I stager. I've told my GP, my oncologist and the nurses at the day unit but I have been told there isn't much can be done about it. does anyone else have this, and how are you coping with it? It is driving me crazy thank you for any advice. Liz
... View more
02-05-2017
07:37
Hi, i have been on this for just over 3 years (every 3 weeks) and initially the joint pain was severe but it eventually reduced to a point where I take paracetamol and codeine to keep it in check. I also take daily Ad-cal tablets to ensure my calcium levels stay balanced. i dud have some issues with potassium in the first weeks but that is resolved now. i hope things improve for you liz
... View more
20-10-2015
08:11
I am on long term Herceptin and Pertusamab since January 2014 with my condition stable. At my last oncologist visit she said they won't change anything whilst it is clearly still working. The results of my heart tests are good although the last test was down by 1% but the oncologist said it would have to get quite bad before they would stop the Herceptin while it is still working. Obviously not as long on it as you, but definitely a different message. can you get a second opinion on it?
... View more
