Saw my oncologist about my new liver met yesterday
I’m having another SABR treatment for it and she would like a liver needle biopsy but this may not be possible due to the position of the met as it’s deep within the liver
She suspects that these liver mets may have a different genome and that’s why the Ibrance letrazole combo isn’t working...maybe they’re her +ve?
Anyway I’m staying on same meds as they’re working well on bone mets and pleural nodules
Tumour markers have increased as I would expect
Anyone here had this happen to them
Barb xx
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It sounds like they are being thorough. I really hope all goes well for you.
I’m having a re-scan in a couple of weeks to check on my slight progression to my axilla that showed up in October. I so hope all is ok and I can stay on current meds.
Thanks Jo for your kind message...sorry you’ve had progression as well...I feel that We go through an ok patch then something goes wrong
I’m also anaemic so tired all the time however I’m sure you don’t want to hear me moaning
We’re getting monitored and treated and will be fine although like you I really don’t want to change meds
I still want the old me back and it upsets me when I can’t do what I want...I’m going up to see my horse in a bit but not sure I’ve the strength to ride...I’ll decide when I get there
Barb - you can moan and groan on this board any darn time you need or want to. We are here to support each other at every step. Venting is allowed and encouraged! You’re entitled to be frustrated and low. The anemia surely can’t be helping. I hope you can ride this rough wave out and find relief soon.
We are here to listen and we all have our days, sometimes more bad than good. I know what you mean about the “old me “. I often wish I could go back 5 or 6 years and be that active healthy person.
Many prayers and well wishes as u plan next line of treatment or to stay on this one...🙏🏻💕
It is not the news you wanted to hear 😞. I hope they can figure out what meds will work for the new met. It’s ok to be down right now, give yourself a few days to adapt to the news and then back to living the nest life you can. Easier said than done I know. Keep us up to date as we are all rooting for you ❤️
If this is a new primary, would it be better because the BC would not have progressed? I don't know the answer, but I hope and pray it is whichever one is best for you. Hugs and blessings, Hannah
I’m sorry Barb. It’s a horrible sinking feeling when the news isn’t good and it takes time to adapt. You are certainly allowed to moan and groan. I’ll hope that your genotype hasn’t changed. None of us love Ibrance but it is the devil we know and change, unless it is for the better, is hard. Hugs. Elaine
Hi Barb,
How are you feeling today? I just wanted to see how you are. I hope you can find out what's going on in your liver. If it's something new that's not linked to the breast cancer, will that mean changing treatment or adding something else and sticking with what you are on?
Hopefully you will find out more soon. Do the iron infusions give you more energy? If so, that should be something to look forward to. I wish you well with your infusion and PET CT scan. I asked for another PET CT scan, but was told no.
The iron infusions are brilliant...I had one just before Miranda’s wedding and it gave me a boost...haemaglobin went up to 14... now it’s 9 and I can tell...feel weak and look pale
Why did you want another PET scan?... are you worried about something?
Having extra scans isn’t perhaps advisable...however you ought to be given a reason for the refusal
Changing the subject I Think I’ll get a Christmas tree tomorrow...I’m having a party (fuddle) next weekend for my horsey chums...it’s a bit of a tradition now ...it’s at mine as I have lots of room...hopefully that’ll cheer me up...I’m not feeling festive at all
I'm glad the iron infusions help make you feel better. Not long now until you are feeling better again. Wow! That's a good increase in your haemoglobin.
I just wanted another PET CT scan to compare the results to the one I had last year. I have noticed significant improvements, but just wanted that confirmed by having an additional scan. My oncologist admitted that cost was the driving factor in refusing another scan. She said that unless things were unclear on the CT scan, then I would not be getting another PET CT scan.
You have had a lot going on lately, so it's no wonder you are feeling down. I hope you feel better soon.
You're welcome, Barb. I hope you have a good Sunday. It looks like we're in for another cold and dreary day. At least it's not icy today! I was walking a dog yesterday and slipped on some ice. I managed to quickly get my footing again and did not fall, but I remember what my doctor told me about avoiding slipping and all I could think of was breaking a bone and how inconvenient that would be!
Let me know how you get on this week with your iron infusion and PET CT scan.
I’m at the stables and the ground is very hard and there’s some icy bits so daren’t ride in case Bugsy slips and I come off...a half ton horse landing on me wouldn’t be a good thing!!!
Certainly not! That would be awful! We went out to a local garden centre café for lunch and it was packed. I've just had a cup of tea and plan to work out soon. Have you been watching War of the worlds on BBC1 lately? It's the last episode tonight.
I haven't seen the film version with Tom Cruise. The only trouble with this version is the chopping and changing between the present and the future. I am looking forward to the final episode. In the meantime, Kim and I are engaged in a good fest.
I hope you will surprise yourself and have a wonderful time. I usually get happy and excited about Christmas but I'm not feeling it. That's ok, feelings change. I wish you the very best Barb, everyone loves hearing from you. Enjoy your horses and your horsey friends.
Good new about my grandson with special needs he's had a few sessions of therapeutic horseback riding! Half the time caring for the horse/stable half the time riding 🐎
I’m so pleased your grandson is happy with his horse therapy...it’s amazing that spending time around horses can have such a positive effect on a person
Winston Churchill adored horses and one of his famous quotes was
‘There is something about the outside of a horse that is good for the inside of a man’....he suffered from Great Depression episodes and found comfort in horses...played polo as a young man
Sorry I’m giving you a history lesson here!!!
Talking about Christmas...I’m a bit better about it this year but last year I was very depressed about it and wanted to run away....too much jollity and happiness around and I was feeling desperately unhappy ...thinking it would be my last one and telling folks not to buy me presents as there was no point etc....yet I’m here one year later ...seems strange now...
I read Churchills quote years ago and had forgotten it, thanks for reminding me.
Glad we should both be here for this Christmas, l remember being prett y sure l wouldn't be here for the first one after Mets because l was so sick then - but the meds worked and are working now!
Blessings, everyone wherever you are, glad we can be here for each other.
I want a real tree this year and my hubby was moaning as he said the fake tree is fine and why waste money on a real one....well I was so mad and shouted at him...this is probably my last Christmas then burst into tears....it’s the little things that upset me as people without mbc can think and plan for future events whereas I can’t even go there
Oh Sandra...all may be well so try not to worry...are you feeling different?
I was flabbergasted to find another met had appeared as I wasn’t feeling worse but assumed my tiredness was due to anaemia and the radiotherapy...I hope we can both stay on the same medication
Oh dear, Barb. So sorry to hear this. But the SABR treatment worked last time, right? So hopefully will again. It's a bore they can't get a proper biopsy. I have been reading about genomic testing and it seems an interesting way to target treatment.
In the meantime, hopefully everything else will stay stable on Ibrance. I have anemia too--since before I started Ibrance, so it's the fault of the cancer not the drugs apparently, and am planning to ask my integrated oncologist what, if anything, can be done. (I see him before seeing my regular oncologist...) If he has anything that sounds interesting to share, I will post it here.
My oncologist says if mine drops to 8 then I’d need a transfusion but at 9 an iron infusion is appropriate...having that tomorrow
Maybe you could do this...I hate being tired...I can’t face Xmas shopping and have bought most online which is cheating and I don’t feel right doing it but I had a trip into town last week...got the bus bought one thing and got the bus back...felt terrible...upset me actually as I can no longer do normal stuff
Barb xx
Hi Sandra,
Let's hope that the increase in breast pain is nothing to worry about. I don't know about you, but sometimes before a scan I find I get these random aches and pains that I can't account for. Then they go away again. It's like my body is playing tricks on me. Hopefully that's all this is and you can stay on your current medication.
Since you mentioned you were looking into genomic testing I wanted to share the tests. Here it’s called liquid biopsy and it runs about 100 mutation tests. I had it done. I am glad I did only because the treatment is laid out. I was positive for pik3 and her/neu turned positive. Whatever mutation is there, the treatment is determined also.
I was on faslodex, ibrance, xygeva, xeloda and had progression and reactions.
It is worth doing. The name of the company that runs the tests is Foundation One.
Foundation one number 888-988-3639. Maybe they have branched out.
Hope all goes well with biopsy.
♥️
Hi Sandra,
Oh I see. Sorry for the misunderstanding. I hope you get some good news from the scan. The pain may be something else. Let's hope it is not cancer related and may be arthritis or something like that.
Sandra I hope your pain is just from the current bone mets....mine got worse in a different area but it wasn’t progression...that’s why I had some palliative radiotherapy to my sacrum and it does feel a bit better
Maybe that’s what you need to help your pain...some ladies on here don’t get pain from their bone mets...god I wish us two didn’t...it certainly spoils my life
Yes it’s good to know someone in the same situation....as you say life would be more normal without the pain
I went to a yoga class last night and I can do most of the postures apart from the sitting forward bends...the pain where my fracture was is dreadful so I just miss those out and do the others....I just can’t sit around all day...though I do as just a short walk brings on the pain and I hate taking so many pain meds
Sorry Sandra I’m moaning as usual when your pain is maybe worse than mine
Infusion was ok yesterday apart from trouble finding a vein!!... got the same palaver to come this morning for pet scan...doesn’t help when cold weather as veins disappear..ah well
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