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Bone mets - please join in

funnyface
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Re: Bone mets - please join in

Renee, You have been quiet. Hoping all is OK. I know you had an overwhelming amount of appointments to get through! Wishing I could drop off soup to you too! FF

funnyface
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Maldives, Checking up on you! Hoping your procedure went smoothly! Wishing I could drop off some soup! Hugs FF

Carolyn52
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Hello crissy and nanofthree
Life's tough for you both at the moment so I'm sending u lots of hugs and stay with us here for kindness and support when u have the bad days ..but there will be good ones too to enjoy ..
People always say stop and smell the roses ..this can be a little treat ..a nice new lipstick, some choc or even a nice walk sometimes helps ..
Hugs xxxx
funnyface
Member

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Congrats Nicky! You are going to have a blast shopping, duemp trucks, footballs, work boots, sporty clothes! You will be busy plastering him with kisses! Enjoy! FF 

Nanofthree
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Hi Crissy.  I know exactly how you feel.  I have never felt as low as I do today.  I get so envious of people who live a 'normal' life, able to plan.  Of course nobody knows what the future holds but this is something else isnt it.  I too long to see my grandchildren grow up.   I am due to start Paclitaxol in 10 days time.  I have coped so well on the other treatments I have had over the past 8 years witH secondaries but this will be a whole new ball game.  Please try not to worry about your upcoming scans. I did at first and now realise that the energy I spent on worrying and taking it out on my poor husband was all wasted energy.  I am sure you will be fine anyway.  Just to let you know you are not alone. Xx

Nanofthree
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Hi Lindyloo.  I am due to start my new treatment on 18 September.  Couldnt sleep last night for worrying about it all.  I was on Vinorilbine and Epirubicin with my primaries 16 years ago and they were horrendous.  I have been on Capecitabine with secondaries, which of course is a tablet chemo.  Would you know anything about Epirubicin (also called Navelbine) which is a tablet chemo.  I was wondering whether to ask the hospital about this.  I really dont want to have to spend a whole day each week there, tablets are so much more convenient.  Unfortunately my hair has thinned a lot on Palbociclib so there isnt much to salvage!  If it was a full head of hair I would definitely try the cold cap. Xx

crissy
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Hi all I've been reading but not posting for a while because my treatment seems to be going ok.

CA15 has come down from 377 to 300. I understand that the norm is 30, but only been on Tamoxifen and Denosumab for 5.1/2months since mets in scull and spine diagnosed.

 

I have been reading your posts and the reality of this illness hits when I read how most of you have been on a very cruel rollercoaster ride.

 

It's the arthritus in feet, knees and hip that give me problems.

 

I know that the cancer is dancing around my body and looking for a spot to take a rest and deposit something nasty.

I am to have my first CT scan since diagnosis at the end of October, and to be honest I am terrified what it's going to show. I knew from the start of my breast cancer in 2013 that I would be lucky to go 5 years without secondry as I had 14 lymph nodes removed and they all had cancer in them.

 

It's just so difficult to just get on with it but we have no option. I want to stay around to see my 4 beautiful granddaughter 's  and my great grandson who is due early December to grow into wonderful people, 

 

Sorry to unburden myself on you all but on a bit of a downer at the moment. 

Lots of love hugs and kisses to you all, we are all in the same boat hopefully none of us yet are in the speedboat. We all want to be in that slow boat to China.

 

Crissy xxx

 

LYNDYLOO
Member

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Hi nanofthree

So sorry you have to go onto chemo. Just wondering have exhausted all the tablet form of chemo now?

Like you I am dreading going back onto chemo and loosing all my hair. I was not offered cold cap back in 2009. I would definitely give it a try now.

When do you start your new treatment?

Have a good weekend everyone.

Sending huge hugs. Linda

Carolyn52
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Hello nanofthree
I'm sorry that you have to start the big guns chemo and loose your hair ..it's a horrible side effect which most of us fear ..although mine was 13 years ago ..I remember it well ..my fringe coming out in the shower etc etc.
Maybe you could try cold capping. .lots of ladies here do and cope well ..I've seen ladies in he chemo unit ...yes its looks cold though !!

Yes ..got the printer set up eventually. ..think I'm too old for technology these days ..
Hugs xxx
Nanofthree
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Good evening everyone.  Nicky I am so thrilled at your news.  A new grandson is wonderful.  Do they live near you so you will see him loads?  I will PM you when I have worked out how to do it!  Any tips?  Well, I went to the hospital today and have been taken off palbociclib and Faslodex and will start Paclitaxol in 10 days time.  Feeling so very down.  I did ask about Eribulin and they said this is probably the next treatment.  So here I go on the wig hunt again.  It is 16 years since I last wore one so I am quite a bit older now so am trying not to go for something too trendy in case i look ridiculous!  I hope everyone picks up soon.  The weather doesnt help does it.  Carolyn I hope you arent still trying to install the printer!  Dont spend all weekend on it!  Xx

bonariensis
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Well the weather has been miserable but where there is rain there are also, occasionally, rainbows.

100_8962.JPG

bonariensis
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Hi Anneemay
Sorry to hear your news. Don't cancel your holiday unless there's no alternative. It will do you so much good. Bonxx

bonariensis
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Hi Nicky
I'm so thrilled to hear your news. Really special for you because of your long journey through cancer and your determination throughout. We can only thank you for sharing all the knowledge and wisdom you have acquired along the way. Bon xx

bonariensis
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Re: Bone mets - please join in

Hi Jellytot
I'm sorry you are having bad menopausal symptoms. I know that not sleeping can take over your whole life and drag you down. As others have said, try and find something good to do each day and if you could find someone to talk to who is concerned but not personally involved, it might help you.
big hugs Bon xx

PMOL
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Hi girls - just checking in too.

 

there must be somehthing in the air as I've been in the gutters too... well, still feel pretty overwhelmed too.  I know I should check back to see what I've told you or not but in between coming home and taking girls swimming so short of time.  Anyway, the latest is that the mets are now in the liver too... although not on the brain I do have mets on my skull which we didn't know ...

now waiting for the onc coming back but think he will say chemo... 😔

got to go but will tell you more later xxxxx

funnyface
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Annemay, That sure was a lot to take in. I'm always amazed at how fast this cancer can move. I get so upset when these oncs take there good old time with getting people on treatments. Let's  with the simple first. Have you ever had radiation to your bones before? I have not , but have heard most peeps say it can hurt worse for a few weeks b4 it gets better. For your liver and lungs it sounds like you need to get started on chemo to knock them buggers back. Maybe if they get you on a chemo your lung won't need drained. Have you had any oral chemos! I will admit the eye issue would have me worried, but maybe it's just a boney met that can be zapped. It would be great if you could squeeze in all these tests, go away for the week then start treatment on return. If you feel you need to get busy with treatment then do it. I know you want to go away, but maybe you can reschedule when you get things under control. I'm stomping my feet for you in anger! I'm so sorry this has put you in limbo. Not fair at all!! Big hugs! FF

Carolyn52
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Update on printer installation ...on step 6 now ..but two tubes of smarties are helping ..should be prescribed on monthly prescription as feel good therapy !!

It's having to keep scrolling through 15 language options to get to the next step. ..pity I can't speak foreign! !
Xxx☺☺
Carolyn52
Member

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Hello anneemay
Phew that's a lot of bad news to cope with but I'm sure your holiday will boost you a lot and maybe some clean italian air will help the sob effect.
I think the doom and gloom of winter and dark nights is pulling us all down a bit lately ...
Hugs xxx

Anneemay
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Well the weather is reflecting how I am feeling right now miserable and I think possibly a damn good cry would clear the air. I apologise for being so negative as I normall try to keep this disease in perspective and carry on with getting on with life. I saw my oncologist yesterday for review, following discontinuing Paclitaxol chemo last month as the recent CT showed further progression in the liver. I have also had radiotherapy to my right shoulder and spine due to pain which is still very evident after just over 2 weeks. The plan had been that I would commence Eribulin following a holiday that both consultants had said we would benefit from. So we booked a weeks holiday to Lake Garda Italy by coach and are due to go next Friday the15th we have been so looking forward to getting a way.

 

However after talking about my shoulder and arm re radiotherapy she asked me about my eyes, specifically how long my left eye had been smaller than the right. So now I am waiting for a urgent brain MRI to see if there are any mets there. I also mentioned that I have been getting SOB on excertion recently since stopping chemo. I do have a known right pleural effusion but again has this worsened since stopping chemo? She has also requested a CXR to see if this is the case and if so this will require draining.

 

Now I am in limbo waiting on a telephone call re appointments as until we know what we are dealing with I can't move on and am really anxious about whether I will be well enough to go. Ann xx

 

PS Big Hugs to all who are also feeling low at the moment this disease is constantly giving us highs and lows in our lives. Two steps forward and three back !!!

 

Carolyn52
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Well ladies on mission impossible here today ...

Bought grandson a all singing, all dancing Printer to do his homework on ... ( everything is on his I phone these days not in exercise books like mine was !) Anyway...an hour to unpack it so far ..with so many bits and bobs ....the instructions are in 15 languages and I'm only on step 4 ..inserting the ink cartridges !! It's going to be a long day !!
Wish me luck ...I have 2 tubes of smarties on standby to boost my sugar levels !!!
Xx📠📠📠
Carolyn52
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Congratulations nicky ...so now it's all about thomas the tank engine and not barbie ( after having 2 girls !) ..you will soon learn all the engine names !!
Jellytot ..there's nothing much else I can say as you have had some lovely replies but hang in there ...there are good days amongst the bad ones! !!
Xxxx
rosie53
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Awww congratulations Nicky, that is just wonderful news! Hope mother and son are doing fine.
Hugs Janette xxx
nicky08
Community Champion

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Morning ladies, it sounds like a few of us are struggling at the moment. Luckily for me I have a new grandson, born last night, to perk me up 😊👶🏻 but I fully understand how difficult things are for so many of us. The ones just diagnosed who are mourning the loss of the life they expected to lead and the longer term survivors who worry about how many treatments we have left and how long can we 'dodge the bullet'. It's not easy for us or the family, who support us but who  we don't want to upset. This forum is a good place to offload as we do all know how we all feel, something that even our loved ones and friends do not at times. I used to get so resentful about my 'healthy' friends and even now I can be very honest with them especially about me not being able to plan too far in the future. As I got my head around my mets diagnosis I started off planning a few small treats, a walk, a cinema visit, a meal out to lift me up. Once I got past the first 3 monthly scan I started to plan to do a few bigger things, until my next scan, so I planned in 3 monthly chunks. That way OH and I could still go on holiday and have something to look forward to. We have always booked things we know we can cancel ie hotels with free cancellation, flights that can be refunded (found this trick out by using Avios, all collected courtesy of supermarkets etc) so this took the pressure off us, or off me I should say. No need to claim on insurance and only travelling when everything was stable or I felt well.  It takes a while to get to this stage and everything at the beginning especially feels so awful. If you are feeling really down, Jellytot (and not surprisingly so as you deal with menopausal side effects as well as the loss you and your husband feel about not being able to have a family) it might be worth having some counselling? It's not for everyone but if you find the right person it might help? I have felt very down, borderline clinically depressed, on at least two occasions but luckily managed to get out of the black hole without needing to take any more tablets than I already do! On both occasions I also lost a lot of weight, like you JT, as I had no interest in food and everything seems so pointless. As with you FF my 2 daughters have grown up with my cancer, which is so sad. They were 14 and 12 when I had my primary but I count myself lucky that I have seen them grow up into 2 beautiful adults, gone through all of their education including university, which I didn't ever expect to be around for. My eldest got married last year and now has just given birth to my grandson. I count my blessings but do know that life is not easy for any of us as the big C word hangs over us all the time, but we get on and don't sweat the small stuff!

Nicky x

ps Nanof3 sorry you also are feeling low, do keep coming on here for support, or PM me as we are in a similar position both treatment wise and length of service!

Rose47
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Morning ladies, it's awful weather here too this morning.  

 

Jelly Tot I am so sorry you are feeling so down at the minute and sending you a big hug.  What about planning some nice things again but start off by making plans for a few weeks ahead to begin with until you start feeling stronger.  Keep busy if you can jelly tot and gradually you may find things feeling a bit more normal again.

 

You are so young and have been cheated out of so much and I truly feel for you. Xxxx

Hayeswen
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Jellytot

You are not alone I feel exactly the same as you. We too are planners and were looking forward to all the things we were going to do when we retired, when we had grandchildren etc and now I just can't see that happening. My husband and I have really down days and other days we are as normal as can be and enjoy life. It is such a rollercoaster. Sending hugs Wendy x
rosie53
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Morning ladies, absolutely horrible weather here this morning!
Nicky, so pleased for you, bet you are so excited and grateful!
Jellytot, really sorry to hear you are struggling, just want to say is please stay strong, sending you a HUGE hug ((((((()))))) xxxxxx
Hugs Janette xxxx
Nanofthree
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Hi Nicky.  So pleased to hear you have a new grandchild due.  Wonderful news!   My daughter was expecting my first grandchild 16 years ago, during which time I was diagnosed with primary breast cancer.  Then my second grandchild was born four years later.  I thought the cancer had gone and I could enjoy my life again.  Then secondaries in my bone were diagnosed in 2009.  Two years later my third grandchild was born.  She is now 6.  I dont know what will to me in the futur but the cancer has certainly made me want to spend as much time as I can with them.  As you say it is the uncertainty and now being able to plan for anything.  Life is so unfair.  My best friend had breast cancer 22 years ago.  Just had a lumpectomy and radiotherapy and that was it.  She is fine.   I am feeling very low at the moment.  You are not alone. Xx

funnyface
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Jellyfish, You have reason to mope!! You were given a rotten deal. I know it's hard to plan. Why don't you start with some small things. Maybe just another couple over for a movie, back yard game and a few drinks, maybe a comedy night somewhere, a yard or garage sale, pick pumpkins, craft night with friends. Just throwing out some simple ideas. Hugs FF

jellytot83
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Hello All, just checking in.

 

I'm doing okay side effect wise from my trial drugs.

 

However, I am having awful hot flushes and night sweats and not sleeping. I'm still struggling to eat and have lost a third of my body weight since May.

 

Mentally I'm not doing well. I'm so so sad all the time. I'm only 34 and I feel like my life is over. I know I'm on some amazing drugs but surely they are just prolonging the inevitable. I don't have children and I feel robbed of a life I wanted. I don't know what the point is any more. I feel so dreadfully sorry for my wonderful husband. I'm so low all the time and I don't think he knows how to cope (I certainly don't). We were both always such planners and now I don't feel I can plan anything at all. I'm sorry for such a mopey post xx

funnyface
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Nicky, Every special event is even more amazing when we make it to them. I have got to see all three of my kids move out and purchase homes. My son and daughter graduate college. My daughter get married. Oldest son doesn't want to get married. Other son doesn't want to get married but is in the solid relationship. We really like her. They say they are forever just not tiring the knot. I never thought I would see any of this. Every event I make I want more!! 

 

Congrats on the little bundle excitement! Either way football's or ballet shoes will be lots of fun. Jus t remember even if you aren't capable of chasing after the little one, there is plenty of things to do and teach. You can do all the fun parents hate to do, play dough and paint! FF

Carolyn52
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Hiya nicky
How exciting for you ..a little bundle of joy to cuddle and love ..do u know if u need to buy football boots or ballet shoes yet for it?
It will pull at your heart ...and your purse strings! !
Xx
nicky08
Community Champion

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Yes, Nanof3 I do think that!  Occasionally, ie during a long period of stability, I get lulled into a false sense of security but then the bl**dy disease comes back and bites me in the bum! Having said that in 2013 when I had progression to my liver I really did think I had weeks to live.  I was struggling so much with heart damage caused by FEC chemo (in 2008) and there was no-one to help deal with both of the life limiting conditions I had.  Having been referred to The Brompton cardio-oncology unit saved my life I think. So, I've had at least 4 'extra' years than I expected - even though I want more - as you have said.  Basically this disease robs us of our future, even though I have learnt to live in the present it's still tough on me and my family, as it is with all of us and our loved ones.  On the plus side I am hoping to welcome our first grandchild into the world any day now - another event I never expected to be involved in when I had my mets diagnosis in 2008.  At least this disease teaches us to treasure these moments.

Nicky x

Carolyn52
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Hello nicky and nanofthree

You both are such an inspiration to us here ..it's good to hear ..it's nearly two years ago now I sat in oncologists room to be told mine had returned after 11 years and I remember coming home and getting "my paperwork" in order so to speak. I'm still at letrozole stage but good to hear there are successful treatments to follow....although not so easy to tolerate ones !!

Anyway where is everyone ? It seems to be radio silence here from our regulars ..so stop reading and drop in and say hello ...
☺☺☺☺
Nanofthree
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Hi Nicky.  No problem.  I have been reading up about eribulin.  I will mention it on Friday when I am at the hospital.  Do tell me, after,living with such a long time with mets , you since 2008 and me since 2009 do you get that dread that time is running out.  I so want to be here for my grandchildren.  I know I have been blessed to have these years but at 68 I want more!  My mum lived till she was 80 and I want some of that. Xx

nicky08
Community Champion

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Hi Nanof3

I realise my reply was a bit worrying for you if you go onto eribulin. I have a friend with secondaries who has been on it a couple of cycles more than me and hasn't used the cold cap and although her hair thinned it's nowhere near as bad as mine - I just got unlucky as its not a chemo that states that you will definitely lose your hair. It is well tolerated and I have found it no worse than Capecitabine which I was on for for about 18 months back in 2013. But good luck with the current treament and hope it keeps working and your bloods don't get too hammered.

Nicky x

Nanofthree
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Dear Bibi44 and Nicky 08.  Thank you for your replies.  I feel a bit better about the Paclitaxol now but will certainly mention the Eribulin.

 

good luck if you do go onto Palbo Nicky.  It has now been too bad, just mild fatigue plus of course the hair thinning.  At least it saves on having to sit there having IV chemo which is a real bonus.  Good luck to everyone changing treatment at the moment. Xx

nicky08
Community Champion

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Hi Nanof3

I don't have any experience of pacitaxel, although have done its 'sister' chemo docetaxel, but that is a bit harsher I think. I have also been told my bone marrow could be getting compromised, maybe its because of the number of chemos etc that you and I must have gone through (I'm over 9 years with bone mets, the last 4 with liver mets as well).  I don't have any words of wisdom but in some cases a hormonal can be re visited (or at least I've seen it happen on this forum) so maybe it's not all chemo from here on in.  I'm due to come off eribulin soon, because of the bone marrow possibility (it hasnt actually been compromised yet but there's a feeling that it might) and go onto fulvestrant and possibly Palbociclib so it doesnt sound like its going to be any easier on the body and bloods in particular from what you've said.  Eribulin is another chemo that might be suggested?  It is a lot easier on the body than some and it does seem to be giving good results even if, like you and me, we've had several different treatments already over the years. I cope with it Ok but do need the gcsf injections on 3 days of the cycle and have used the cold cap (yuk!) but still lost about 50% or more of my hair and now have no eyebrows or lashes - great!  That has never happened before on any chemo so I'm quite surprised, I've always managed to hang on to them even when I've lost all my head hair. Hope this doesnt worry you but just wanted to add my experience.

Nicky x

Bibi44
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Nanofthree I didn't have too bad a time on paclitaxel, but I had the weeklies which are known to have very few side effects, esp not much bone marrow suppression. It's not like FEC or that type of chemo at all & my hair grew back whilst on it. I did do the cold cap though. The clue to the downside of weeklies is obviously in the name ... you are at the hospital every week. I used to have bloods on Fri & Pac on Mondays, to save hanging around, but it's wonderful to just keep living life as normal rather than being in that chemo bubble. I gather 3 weeklies are more like proper chemo. Good luck xx
Pippin
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Bit quiet round here.

Autumn's here.

I'm 10 months from finding out I have bone mets. I am well used to the diagnosis now but it really has taken me this long.

Pippin

funnyface
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Sorry Nano!! I haven't had paclitaxol. Let us know how it goes! Big hugs!! FF

Nanofthree
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Hope you dont mind but one other question to everyone.  Do you know what happens after Paclitaxol?  In other words, can you revisit a hormonal or will i be on chemo for ever now?  Horrible thought.  Xx

Nanofthree
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Hi Carolyn.  Hug gratefully accepted!!!!!!!!  I know it is a shock having the prospect of 'real' chemo.  I had such a rotten time with it 16 years ago when I had my primary.  Cant face the thought of it, let alone losing my hair again.  Ugh!!!!!   Take care. Xxx

Carolyn52
Member

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Hello nanofthree
Oh dearie me ..thought I would just say a Hello but I don't have any answers ( as usual) ....both funny face and still here have experience of this regime so hopefully they might be able to help.
Maybe you need to chat to bcn ( if u have one ..I don't! ) or oncologist. ...
It's always hard having to face the big guns chemo after taking the gentler treatments .
Sorry not much help but I will send a hug xxxx
Nanofthree
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I havent posted for ages.  Just getting on with life but now I need some advice.  PLEASE!!!!!!  Into year 8 with mets to bone.  I have had all the hormonals, plus Capecitabine and have now been on Palbociclib and Faslodex for 18 months.  Feel ok on this, the main problems being fatigue and hair thinning.  Since April I have had four blood transfusions due to low red cell count, plus my

white cells always fall at the end of each treatment and have to be helped up again with gcsf injections.  The hospital say that because my bone marrow is suffering I will maybe have to go onto Paclitaxol, something I have been dreading.   Does anyone have positive experiences of this drug.  Also does anyone know of any other reason why the bone marrow could be compromised.  I have already gone downmthe leukeamia road.  I get blood results next week.  Just dont know where to turn.  Nanofthreexxxxx. Thank you.

Carolyn52
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Hello ..Maldives
Just popped into wish you all the best for tomorrow and hopefully it will help and be a quick procedure .
Hope everyone is enjoying the beautiful sunshine here today ...Im off for lunch with Barton and Bon and yes cake will be involved .
Hugs xxx
funnyface
Member

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Maldives, The nerve thing sounds painful and annoying!! Wow, for being able fix it in 15 minutes. I would definitely sign up for that! You can do America!! I know your meds are making you tired but I'm sure this nerve pain and hubby not being home is playing on you too. Once your "Rock" is home you will be able to handle it! Depending on where you will be here maybe we could meet up. Wishing you the best with your procedure! Rooting for you!! FF

Carolyn52
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Hello Maldives. .fatty fatty bum bum

I shouldn't worry too much with the weight at the moment if they are keeping you going ..I expect they will start reducing them soon ..
My hubs takes them for chest infections and he seems to balloon very quickly and eats non stop like a little gremlin.
I'm glad u have had the op explained to you ..sounds like it will b quick and u will be asleep mostly ..nerve pain is agony so if this helps ..then you will be a lot more comfy
If the chemo is knocking you for six ..maybe they would reduce the dose a little ? But I'm not an expert on these things ..
Hugs xxxx
Carolyn52
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Hiya Alex
Yes guessed it was herceptin ..it's a magical treatment for lots of ladies that are her positive but sadly a lot of us are negative for it so have to rely on hormones /chemo.
I'm sure your posting will cheer up lots of ladies reading this though.
Xxxx
Maldives
Member

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Hi ladies. Thanks for your support. I know I'm stupid to Google things I should know better. I came across it by mistake then one thing lead to another giving me a terrible weekend of worry. I spoke to my onc nurse today and the metz they are talking about is in my jaw which I know about and has been there from the beginning although not so much. The treatment is for neuralgia pain in the face caused by pressure on the nerve.
From what I can make out I'm put to sleep then they wake me to see if the pain is still there then they put me to sleep again. Clever stuff. It only takes 5 - 15 minutes to do the procedure and there is no cutting involved. I think with that and the new chemo I was just overwhelmed. My hubbie is away too which doesn't help as he's my rock. I was planning on going to America on 20th September but there's no way I can go on this new chemo. It's knocked me off My feet. The fact I look like a sumo wrestler due to steroids is not helping with my legs. Size12 to 18 in two months. Hey fatty bum bum. Lol.
Anyway enough rambling. Thanks once again you lovely ladies. Xx
Alexde
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Hi Carolyn

 

I have been on herceptin and tamoxifen for nearly 9 year now.  I am glad I checked back into this forum although it has been upgraded a lot since I last used it, there is a good chance that I will end up posting stuff in the wrong place.  😀