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Bone mets - please join in

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Re: Bone mets - please join in

Nicki had return of bc in 2013 when I had bones and peritoneal diagnosed..liver Mets diagnosed last November.and had docetaxol which only had small effect.then been on examsstene but ct show liver Mets progressed.thanks for your advice.xxsharon
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Re: Bone mets - please join in

Thanks to everyone for replying..i will ask for a liver biopsy when I go...just in case my receptors have changed..and see if she can offer anything.if not I will ask for second opinion..i may phone and ask for earlier appt..hardly a chance of that I think...thanks for all advice.take care everyone.sharon.❤
Community Champion

Re: Bone mets - please join in

Hello ladies.
Well I knew it ..got a mozzie bite this morning and hubby has just killed one in the lounge so off to buy everything possible to keep them away !!
Cant believe I slept eleven hours last nite without a pee or a flush. First time for ages
How are you all doing?
Xx

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Re: Bone mets - please join in

Hello Sharon
So glad u have had some good advice from everyone here ..what lovely ladies.
Just tuning in to say ..Hugs and thinking of you.
xxxx
Community Champion

Re: Bone mets - please join in

Hi Sharon, so sorry to read your post. I don't know anything about liver mets, but when I recently discovered a lump I phoned and got an emergency app with an onc. It was not my regular onc , but they were very thorough and helpful. Please take care M xxx
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Re: Bone mets - please join in

Hi sharon

So sorry to hear you have progression and also that I can't remember if you already had liver mets or whether your bone mets have now spread to the liver. My bone mets spread to my liver after 5 years on hormone treatment. I insisted on a liver biopsy, having read on this forum about receptor status changes. I'm glad I did as my HER2 status showed as having changed from nearly 10 years of being negative to now being positive. This has given me different treatments available which I wouldn't have been able to if I hadn't had the biopsy done. I would suggest that you contact your oncologists secretary saying that you need an appointment earlier than the scheduled one on 16th as its too long to wait for a change in treatment as far as you're concerned.  I know it's holiday season and that all the consultants in our hospital seem to take August off (grrrrrrrr!) but hopefully your appointment can be moved forward. Ask if a biopsy can be done.

If however you have had one done already I'm assuming it wouldn't have been too long ago therefore the results would probably be the same as current in terms of receptor status. In either case your oncologist should be able to put you onto another type of chemo, having seen from your postings that the hormone treatment hasn't been effective. Also it may be worth asking for a second opinion and travel to the nearest specialist cancer hospital. I'm in the south so I have been to The Marsden twice for second opinions but I know of The Christie further north and think that Sheffield has a specialist centre if you are closer to there. Your oncologist won't like it (mine was very huffy about it!) but you are entitled to it and it could open up other treatment options or even being considered for a trial of newer drugs or combination of drugs that aren't available locally.

Hope some of this info helps and sending lots of hugs your way as its a bummer when we get progression.

Nicky x

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Re: Bone mets - please join in

Hi Sharon, sorry to hear about your results, can't really offer any advice on liver mets though. I know it's a few weeks off until you see your onc  (which is rubbish!!) I'm the same I usually have to wait around 4 wks it's ridiculous! But I would think he/she will have a treatment plan ready for you to start on. 

Stay strong sending you a big fat cyber ((((hug))))

Janette xxxx 

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Re: Bone mets - please join in

Sharon sorry to read your post hope your ok you would think if they were concerned they would get you straight in! I'm sure there will be other things you can have maybe you should see if you can have biyopsy done I've seen on other site people's mets changing love Julie ❤❤❤❤
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Re: Bone mets - please join in

OH Sharon, It's so scary and disappointing when there is progression. I would think you should have more treatments, after reading your list! Hang in there and give your oncologist a call if you are worried. You shouldn't have to wait. Hugs! FF

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Re: Bone mets - please join in

Oh Andrea . That sounds a really good idea ..I will look online tomorrow ..I always have my window open even in winter ..feel like I'm in a sealed box now.
I bought mozzie bracelets but gave them to my son for camping so must buy some more too.
Hugs xxx
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Re: Bone mets - please join in

Hi Sharon, so sorry to hear your news. I wonder when your last status check was. Is there a possibility your cancer type has changed. If you haven't had it done for a while an option might be to ask for another biopsy to see as if it has changed the chemos won't make any difference.

 

much love to you xxx

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Re: Bone mets - please join in

Carolyn, I just cannot sleep with the windows closed so have them open the whole time. I've got insect screens though otherwise I'd be bitten to death! Now, When I saw insect screens, It's Velcro and net (from fly screen queen! Really cheap but does the job.

Feels cooler tonight though!

A X
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Re: Bone mets - please join in

Oh Sharon, so sorry to hear your news, I'm not much use either as i don't know anything about liver mets treatment. Hopefully when you see onc she'll have a plan of what you can try.

Big hugs Andrea xxxx
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Re: Bone mets - please join in

Oh Sharon..I know its hard but hopefully the more experienced ladies here will be reading and will know of other treatments that they have had after the basic stuff you have had.
It's a long wait for you now to see oncologist ..pity as you need an urgent appointment and new treatment.
Honestly .what am I like ..not much help really but I will be thinking about you and send you hugs xxx
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Re: Bone mets - please join in

Another winge ..3 ladies I spoke to at hospice told me they only ever wait a week before ct results.i always seem to wait about 4.once it was about six.too stressful..sharonx
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Re: Bone mets - please join in

Carolyn.i went to hospice today and iv got mouth thrush again ..so the McMillan nurse wrote me prescription.and said my ct results were in .i asked her to tell me so it was just a brief description.but she spent 45mins with me .more than hosp does.my oncologist appt is 16th.so I will know more then.i have had fec.capecitabine and recently docetaxol as chemos.and I have had five years tamoxifen.11 months letrozole and am currently on examestane which obviously hasn't worked..i dont know what the next option is or if there is one..xxsharon..
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Re: Bone mets - please join in

Oh Sharon.
I'm so sorry to hear this as you have done the chemo recently too.
Is there another hormonal you can try ? Or what options do you have now ?
Has oncologist offered you other treatments or even a clinical trial with ibrance maybe.
Keep posting here ..we are all here to help as you must be feeling so downhearted .
Hope you have settled your daughter into her new flat and try not to over do things ..easy said I know.
Sending you mega hugs xxxxx
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Re: Bone mets - please join in

Hi all found out today that iv had progression in my liver Mets.normal bloods but Mets bigger and slight ascites.feel down .so obviously examastane hasn't helped me..😞 sharonx
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Re: Bone mets - please join in

Oh ff
The treatments don't help us with the heat do they ?
I like September too although the darker nights are a pain. Usually I sleep with the Windows open ....but once we have rain after heat .the mozzies are about and they love me ..num num!!!☺☺
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Re: Bone mets - please join in

Rainy, hot, and humid here! I think I'm ready for Autumn as long as it starts early and goes into winter. Not a fan of winter! Need to get out of here today! Going crazy!  FF