63455members
333940posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

Member

Re: Bone mets - please join in

Hi,Madge & Tink, thank you. Huge hugs to you both,Helen xxxxxxxxxxxx
Hi,Madge,hopefully it will not be long for you too xxxxxxxxx
Member

Re: Bone mets - please join in

Yay Helen,

 

That's great news.  I'll be thinking of you next Tuesday.  You'll be done and dusted before you know it!

 

Have a great week of spoiling yourself and let others spoil you too ((((Helen)))).

 

Tink x

Member

Re: Bone mets - please join in

Hi Helen, at long last you're getting the surgery that you wanted!!!! Great news and wishing you all the best for next week, will be thinking of you!!!! Just hope my tumour and lymph nodes shrink enough for me to have surgery!!! The capecitabine is doing it's job!!!

Hi Chris, sorry to hear your news, wishing you all the best xxx
Member

Re: Bone mets - please join in

Hi,ladies,thank you xxxxxxxx just glad to get rid of at least the mother ship. And praying her "babies" behave for a long time.
Hugs to you both & hope you are all keeping well,Helen xxxxxxxxx
Member

Re: Bone mets - please join in

So pleased that you have a date, and a near one at that. Best Wishes for Tuesday. Xx
Member

Re: Bone mets - please join in

Hi Helen that's great that you don't have to wait long. Roll on next Tuesday!
Love Tracy xxx
Member

Re: Bone mets - please join in

Hi,Janette,thank you. You will get your bloods done regularly ,I get mine done every 3weeks before I have bone juice. It's to make sure all your bits are working properly ( not very technical ) it tests to see if you're anaemic ,liver function,kidneys ,calcium to name but a few. Don't worry about it it's a good way to keep an eye on you.
Cake was lovely,thanks.
Huge hugs,Helen xxxxx
Member

Re: Bone mets - please join in

Hi Helen, just want to wish you good luck for your op next week, been reading your posts and so sorry you have had such a rough ride with things, i dont really post much on the forum but i do read what you ladies write and it has really helped me as im quite new the secondary dx gang!!!

i have my first denosumab next week and have just received letter telling me to have bloods done 2 days before hand and a pathology form with "pre-chemo bloods" wrote on it?? does anyone know what that means? i thought it was a bone stregnthener??

Hope you enjoyed that cake Helen you take love Janette xxx

 

Member

Re: Bone mets - please join in

Great news Helen - I have been thinking of you today. Enjoy the next few days and good luck for Tuesday - heres hoping that everything will be on its way up for you from now  you deserve it!x

Member

Re: Bone mets - please join in

Hi,thank you ladies,I will,just had a huge piece of cake for a treat! No double,but I'm happy with what I've got at the moment. Just packed bag so I'm all ready to go lol
Massive hugs to you both,Helen xxxxxx
Member

Re: Bone mets - please join in

That's great news Helen. Glad he seems a nice person too. Makes a change for you to have someone you can get on with! My onc looks really young too but if your surgeon is a nice as he is you will be OK. Not long to wait either so as chocolates says, spoil yourself this week.😊 love Sheila. Xx

Member

Re: Bone mets - please join in

Oh Helen that quick? That's fantastic news. Now concentrate on having a few nice days before next week. So so pleased for you - not a double mx then? Was that too much to ask?

Huge hugs,

Hxxxx
Member

Re: Bone mets - please join in

Hi,lovely ladies,just to let you know I'm going in for my mastectomy on next Tuesday . It's taken a year to get one but at long last it's here,yikes!
Surgeon lovely man ( looked only 15!!though lol) glad I'm doing it as watching tumour grow on breast is awful.
Sending you massive hugs,Helen xxxxxxxxxxxxxx
Member

Re: Bone mets - please join in

Hi Helen, just wishing you good luck for today. You never know you might get a good outcome!! Will be interesting to see if you've been labelled a trouble maker after speaking out on Monday.

Huge hugs,
Hxxx
Member

Re: Bone mets - please join in

Hi chris, so sorry to hear of recent progression. I hope a treatment plan is sorted soon so you can get on with things and feel more settled.

Huge hugs,
Hxxx
Member

Re: Bone mets - please join in

Hello Chris so sorry you've had progression, it certainly sounds like you a lot to cope with at the moment. Hope you start to feel better soon.

Tracy xxxx
Member

Re: Bone mets - please join in

Hi Chris,

Sorry things aren't good at the moment. I know how you feel as I had been running pretty smoothly until last Dec when on top of my lung and bone Mets I had progression to the liver. I have since had taxotere and am waiting for a scan in two weeks to see what things are like now. My scan halfway through treatment showed some shrinkage to the liver tumours so I am hoping they are smaller still now! I certainly feel better than I did in Dec and Jan.

Hope you have good results from eribulin without any side effects.

Take care. Love Sheila. Xx

 

Member

Re: Bone mets - please join in

Hi Chris,

 

Sorry to hear that you've not been well lately.  The ladies on secondary live chat tonight will be there to support you if you can join us later.

 

Take care

Jo, Moderator

Member

Re: Bone mets - please join in

Hi,Chris,so sorry to hear you not doing to well. Hopefully the rads will help with pain. No,this C never gives you a break,when you think things are doing okay it kicks you down. You are a strong woman so
Hang in there and the Eribulin will kick it's butt. We are all here for you Chris xxxxxx
Sending you massive hugs,Helen xxxxxxx
Highlighted
Member

Re: Bone mets - please join in

Hi Ladies,

 

I haven't been on for a while and I've not been too good.  The MRI scan shown that there is progression to S1 and L2, I also have progression to the pleural, tumour in my lung has grown, there is a large lypnme node pressing on my neck and that I now have liver mets.  Im in a sink at the moment and don't really know which way to turn.

My oncologist has arranged Radiotherapy for S1 and L2 which was a heavy dose that made me very sick for a couple of days.  The pain has been pretty horrendous but I have got my doses about right now and using ibrufen and paracetamol which is helping.  I start eribulin in the 16th and have had to cancel so many things which hasnt helped my mood.

Im just trying to take one day at a time and hope that when I get through the worst of the fatigue I'll start to pick up again.

 

Life is never easy is it?  I really hope you are alll doing as well as you can be.

 

Love

Chris xxx

Community Champion

Re: Bone mets - please join in

Hi Helen, I've also been away so have only just caught up on posts. At long last someone seems to be doing something but I can't believe they have taken this long, grrrr.  Hoping you do get a surgery date asap so this part of your treatment can get going and you'll have more idea of what other treatment is needed.  My secondaries have changed from being only hormone positive to now being ER, PR and HER+ so it can happen. Strangely my oncologist (when I found out from a biopsy last year) was more surprised than I was that this can happen, duh. I recommended he read this forum!  Thinking of you as you wait for yet more appointments and well done for eventually getting your PIP (do we really have to fight for this all the time?) and for telling the BCN how badly you have been treated or in fact ignored.

Mileytom - don't beat yourself up for not having chemo first time around, I was exactly the same. Grade 1, no nodes, 90+% chance of a ten year survival and wham, got my secondary dx nearly 5 years afterwards.  Well, I suppose they got the 90+% bit right as I'm still here, but.....

Thankfully these forums again helped so much and reading them made me realise that it would have come back anyway whether I had chemo or not for my primary. I had chemo for my bone mets in 2008 and this kept them stable for 5 years, along with follow on hormone therapy until last year when I had spread to my liver.  However since starting Capecitabine (Xeloda)  last Feb everything again has been stable.  Just waiting (quite literally) for my next CT scan to see how things are going.  I'd also add that if you are coping Ok with the chemo I would do the 18 weeks (as thats the usual amount of time for 3 weekly chemo regimes anyway) and really hit the uggers with all that you can Smiley Happy

Hi to all other boney ladies, hope the treatments are working well and side effects minimal.

Nicky x

Member

Re: Bone mets - please join in

Hi,Sheila ,Lynne &Julie,thank you xxxxx yes,I thought when they did ultrasound they would have biopsies but apparently they only biopsy a couple so it sort of makes sense with my markers going up for a year that something else was going on. But again no one listens ! Now I'm having surgery they will biopsy all tumours,a bit late now !! Even if they had given me a CT scan in the last year that would have shown them something was up.
Oh well ,there's nothing I can do now but pray it hasn't decided to have a party everywhere else while they have been faffing about.
Huge hugs to you ,Helen xxxxxx

Huge hugs to all the wonderful ladies on here too xxxxxxxxxx
Member

Re: Bone mets - please join in

Hi Sheila I'm doing quite well, been very tied sleeping most of the time and lost my hair had a bit of a rash some pains in my legs but apart from that ok, thank you for your reply I have no 13 tomorrow I will see my oncologist first so I'm going to carry on give all I can thank so much everyone xxxx
Member

Re: Bone mets - please join in

Hi mileytom,

When I was diagnosed with my primary in 2008 the onc said that if I had chemo it would give me another 7% chance of the cancer not coming back. I decided to have chemo but it still came back so don't blame yourself. 

As for whether to carry on with taxol, I don't know what I would do. How are you coping with the side effects?

Whatever you decide, good luck. Love Sheila xx

Member

Re: Bone mets - please join in

Hi helen,

Well done for letting them know what you think! It doesn't sound as if your onc is listening though does it? When you see the surgeon on Wednesday she may do a biopsy then especially if it is going to be a couple of weeks or so before the surgery. When I was originally DX with my primary, I had a biopsy on the day I went for my first appointment because it looked suspicious. I hope your surgeon is more compassionate than your onc! Can you not change him? He sounds awful! Also, you should be getting a scan because of your bone mets. I can't understand why he keeps putting this off.

Good luck on Wednesday. Will be thinking of you. Love Sheila. Xx

Member

Re: Bone mets - please join in

Hi Helen,
I've been thinking of you all week, we've been away to Brighton in our Motorhome and I tend not to look at the internet when we are away!!! Sorry to hear about the new tumours etc. fingers crossed that the breast surgeon will offer you, your mastectomy that you've requested and hopefully offer you a double mastectomy because of your history. I'm glad you told them how you felt and your poor care !!!!! Congratulations on getting your PIP especially backdated to last august! you deserve it! and so does everyone else!! Thinking of you for your next appt.
Julie xx
Member

Re: Bone mets - please join in

Thank you so much Ladies the reason I'm doing well mentally is because of you Ladies so grateful I found breast cancer care forums xxxx
Member

Re: Bone mets - please join in

Hi,sue,thank you xx. Yes,I did say that to him being Brac and a double seemed prudent,but think it fell on deaf ears again.
Huge hugs and thank you xxxxHelen xxxxxx

Hi,mileytom,sorry I can't give you any advice with the chemo as I haven't had any. All I can do is wish you all the best with your treatment which you seem to be coping fantastically with and send you huge hugs,Helen xxxx
Member

Re: Bone mets - please join in

Hi Mileytom, I agree with Desi. We are not the experts and your onc should know best. Unfortunately no one can predict who gets secondaries. I know ladies with grade 1 bc with no spread who developed mets so please don't blame yourself. You need to focus on now. The only thing I would add is that if there is still some cancer cells left and you have responded well so far and can tolerate then perhaps it would be worth continuing. However as Desi said your onc should really be taking the lead on this.Perhaps you could ask for the scan reports so you can make a more informed decision.

Huge hugs and take care,
Hxxx
Member

Re: Bone mets - please join in

Hello Mileytom tricky question over whether or not to have more chemo can't help but think the onc should make this decision instead of leaving it down to you but you really shouldn't blame yourself for not having it before there are lots of ladies who have gone on to have secondaries who had chemo first time round. Good that you are coping with it tho. Good luck with whatever you decide. Take care xxx
Member

Re: Bone mets - please join in

Dear Helen,

                       Just posting to say wishing you all the very very best.  I hope your team listen to what you want.  I would have thought if they are saying that you have new tumours with new receptors wouldn't it make sense to do a double mastectomy as a precaution especially with the brac gene too.

 

Congratulations on getting your PIP too.  I hope you have some luck with your treatments now!!

 

Sue XXXX

Member

Re: Bone mets - please join in

Thank you Lynnq , that's what I thought some times I doubt my feelings, when I was dig with breast cancer 2009 said I border lined chemo it gave me a extra 2%so I decided against it I was put on lettrozol and zoladex and it came back keep blaming my self for not having chemo hugs back mileytom xxx
Member

Re: Bone mets - please join in

Hi mileytom....like you I don't often post but I do read this forum every day, at least once.
I didn't have chemo so not really able to comment on that, but, Since you are finding it doable I would consider that the more we are able to throw at this dreadful disease the better.
Hugs to you whatever you decide

Member

Re: Bone mets - please join in

Hi Helen been thinking of you today and just arrived home and caught up with your posts.
I don't really know what to say. Your Onc sound horrible, is he the only one available to you?
As you say at least it's not too long a wait until Wednesday but the wait, for this short wait has been a long one.
Hugs and kind thoughts coming your way

Lynne
Member

Re: Bone mets - please join in

Hi,Tink,I'm not sure how long pathology reports take. No,still no MRI or CT at moment. So still not sure if it's spread. But I do think after surgery that will be on the cards(I hope)
Huge hugs lovely lady xxxx take care,Helen xxxxxxx
Member

Re: Bone mets - please join in

Hi all you lovely Ladies, I don't join in on the forum a lot but I do read a lot of your threads and can I say you have all helped me a lot on my really down days,you are all very insperaional . I'm not very good with computers so sorry if I make any mistakes,I'm here to ask for some advise I was dia in Febuary with bone mets to my sternum and scram I had a spot on my lung which they wasn't sure what it was I started on 18 weeks of taxo which I'm finding doable,I had a scan 3 weeks ago which showed the spot on my sacram had shrunk lymth nodes on my sternum had shrunk mets in my sternum stable the spot on my lung isn't mets , now my oncologist said he was happy for me to stop at 12 weeks but if I want to can do the 18 I don't no what to do can anyone advise please thank you so much xxx
Member

Re: Bone mets - please join in

Hi Helen,

 

Glad that you got a few things off your chest and I hope your 'team' are now a little more on the ball.  Good to see treatment moving forward; at least your onc is thinking about whether you are now TNBC or HER+, but being back to square one is annoying.  When do they think your pathology report will be ready?

 

Are you going to have a CT scan or MRI as well?

 

Sorry, too many quesitons - huge (((())))) and good vibes.

 

Tink x

 

 

Member

Re: Bone mets - please join in

Helen, I just can't begin to know how you are feeling. Make sure you say the same thing to your surgeon about wanting mx last year. It's just dreadful. How dare your onc just smile. I'd like to slap his face - would make me feel better anyway.
At least the wait is only one day. Let's hope surgery is also really quick.

((((((Helen)))))

Hxx
Member

Re: Bone mets - please join in

Hi,chocolate ,oh crossed posts. I asked for double mx because of BRAC gene but he said he has to take a step back & hand me over to surgeon and double wasn't a priority. If mammogram shows anything on Wednesday obviously a double will be in order. I just wish they had listened to me a year ago when I asked. I did say to him I asked a year ago but nobody listened to me,he just smiled !
Yes,I agree sometimes they just think we are wobbly because of treatment & are not taken seriously .
But one day until Wednesday and hopefully I'll have a date for surgery then.
Thank you so much for all your support,don't think I could cope if I didn't have my lovely cyber friends on here.
Huge hugs,Helen xxxxxx
Member

Re: Bone mets - please join in

Hi,Tracy ,yes,they biopsies first primary lump last year and I was ER+ but he thinks the new tumours will be new cancers & probably will have a different marker as they've grown so fast over the last 8 weeks when I first reported them to BCN. No biopsy today he said the multiple new tumours will be tested when breast is removed. All terrifying at the moment and emotions all over the place. Still no CT scan or overly removal as he said mastectomy top priority,yikes!
Huge hugs,Helen xxxx
Member

Re: Bone mets - please join in

Hi Helen, how annoying, frustrating and awful was your appt today? Really feel for you. I'm so pleased you told the bcn how you feel. They needed to hear it - alas sometimes I think that they feel we are just emotional and affected by treatments so don't take us seriously. I hope in your case though that what you said sunk in.
I'm glad you are finally getting your mx - the path results - will they come after surgery or have they done a biopsy now? If after surgery it's further waiting - could the surgeon do a biopsy on Wednesday to speed things up? Also will you think about double mx? Is that an option or something you don't want to consider at the moment?
I really feel for you and sending you a huge hug. We're all here for you. Rest up now for Wednesday.

Take care,
Hxxxx
Member

Re: Bone mets - please join in

Hi Helen how frustrating for you! Did they not do a biopsy last year when you were diagnosed? Have they done another today?
Glad you gave them a few home trues hopefully it will have pricked their conscience!
Hope they speed things up for you now too.
Xxxxx
Member

Re: Bone mets - please join in

Hi,lovely ladies, well back from onc. He says he's removing one breast as very concerned about new tumours which has grown massively over the last 8 weeks. He thinks it may be TNBC or Her+ as it's not responding to hormones. I go this Wednesday to see surgeon and for mammogram on other breast. So will have a date on Wednesday (hopefully) for surgery. I did say to him I've been asking for this for a year & new tumours could have been avoided if I had mammogram last year at first diagnosis.

I also told BCN that there "tough love "approach to my care was not helpful & saying I should be used to going on onc day ward by now did not help with anxiety of going there every three weeks,also lying saying my results weren't in was cruel as I knew by that that markers were up. I told her I felt totally abandoned over the past few months.
Felt I got a few things off my chest ,but still back to square one with treatment as he won't change until pathology reports back.
Oh well here we go again.
Huge hugs to you all,Helen xxxxxxxxxx
Community Champion

Re: Bone mets - please join in

Maldives, glad to hear you are having a better day today and hoping that next week will give you some answers and a treatment plan which should help you feel a little more in control. It's a tough time so be gentle with yourself xx
Member

Re: Bone mets - please join in

Good morning ladies,

 

Thank you for you feedback.  I will know more next wekk when I see my oncologist.

having a better day today. sending love out to you all xxxxx

Community Champion

Re: Bone mets - please join in

By the way, don't worry about trying to reply to everyone individualy it would take for ever!, I can't always remember what everyone has said individually. A general post is absolutely fine xx
Community Champion

Re: Bone mets - please join in

Hi Maldives,
Sorry you've had to join us but glad you found us and hope you'll find lots of support and encouragement here.
I've been on Letrozole since dx with bonw mets 4 years ago so has worked well for me, it can make your joints ache.Radiotherapy should help your pain though it can cause a flare up and make pain a bit worse before better but not everyone experiences that.
Yes you can fly as well as you are well enough BUT there are often problems getting travel insurance, you will find threads on travel on site.
Good luck 2catlady with your appt tomorrow, hope you get answers and proper action plan,will be thinking of you.
Hope everyone has a descent week xx
Member

Re: Bone mets - please join in

Hi,Tink,thank you xxxx (((()))) hugs to you too,Helen xxxxx
Member

Re: Bone mets - please join in

Evening everyone,

 

I just wanted to say good luck with your appointment tomorrow Helen (It is tomorrow isn't it?).  I will be thinking of you and sending good vibes your way.

 

((((Helen))))

 

Tink x

Member

Re: Bone mets - please join in

Hi Maldives have you been offered radium to help with the pain!!!! as they were going to take the option away from my mum as the bone strengther helped a slight bit .... Until I said that it took her ages to get out of bed in a morning and she couldn't climb the stairs without pulling herself up ;-( she is now on day 3 of 5 radium treatment and has found the first day even helped her so hopefully the progression will carry on! Just to see her out of pain and doing what she wants to do has been a hell of a lot better than the three months seeing her wincing in pain ! Hole u have and have for your treatment plan in order with onc if not maybe mention to help with the mobility and pain !! X I'm quite new to this site too as just felt like I had to research ALOT before onc app and what to ask for I must say this site has helped me feel at ease in my lowest moments and felt like the answers and support on here among all the brave people are amazing x good luk and hope ur pain eases soon x