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Recently diagnosed with secondary mets and just started treatment - could do with a bit of support.

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Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

I think the fatigue gets to us all and it must be a way of our bodies trying to go into overdrive in its attempt the repair during sleep. Well, that's my positive spin on it because it drives me crazy! Two years ago I was running 5k for cancer, now I can barely walk to the kitchen as the pain is so intense and my body just wants to sleep.
It certainly does help to converse with others in a similar situation on here. Sending positive vibes that you are on the new drug and it has the desired effect! Sue x
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Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hello ladies, no longer the newbe on here and it's only been two weeks since I was diagnosed with secondary mets on pelvis and hip. Just goes to show the frequency of this unrelenting disease but each day we are here is a day closer to finding a cure! Abney, I have no advice or words of reassurance but I do know you need never apologise for saying how you feel, good or bad!  I'm still getting to grips with replying to posts on here as I constantly feel confused and make the most simple errors in everyday life.  I went into the school where I work on Friday to hand in my sick note and the children were so wonderful and pleased to see me, it just boosted my mood immediately. For those couple of hours, I forgot my pain, illness, fear, and looked at their work, received endless cuddles and felt positively alive for the first time in weeks. We have an autistic base and my dear friend has an autistic son. He is now an adult but as a small boy, life was terribly demanding so I can empathise with your concerns.

I hope you have a good family network to offer you a bit of help, although it's hard for anyone who has not experienced tnbc to fully grasp the fear that secondaries bring. 

Thinking of you and wishing you the strength to fight once again! Hopefully someone else can offer you peace of mind with regards to your headaches. 

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi Everyone

 

My name is Lin and I was diagnosed with secondaries in my lungs, liver and bones yesterday - in a state of shock as I was 10 years this year from my primary breast cancer - so so very scared.  See oncology on Monday.  Abney my heart goes out to you xx  I am also in pain and can't believe how quickly this all seems to be progressing.  No matter how lovely everyone around you is they can never know the incredible fear you feel.  It must be so hard dealing with your little boy on a day to day basis and trying to cope physically and mentally - I hope you have lots of people around you supporting you.  My children are 21 and 24 and away studying and the thought of telling them breaks my heart. I am sorry I can't give you any advice but like you I am just at the beginning of this journey.      

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

So good to hear from you Paula. I'm Fiona, known as Fi

Well they're racing to get me onto chemo on Friday!! Port being fitted on Wednesday. I'd forgotten just how intensive it is at the beginning of a treatment plan. At the moment I'm not sure what chemo. I'm starting on a trial, so will be randomised, and either given the Paxotaxel (or whatever it's called) I would have had anyway (18 weekly chemos) or I'll have a newish drug called Cabazitaxel, which has shown some good results.   Fingers-Crossed the system picks me.  I really feel too I'd be doing something to help women who'll come after me. 

I've been tired for weeks, and not much appetite, and worried deep down, but didn't want to know. Stupid isn't it.  

If the chemo doesn't reduce my tumour after 12 weeks they'll start me on the oral which I can take at home but can cause bad diarrohea apparently. 

Thank you for the hug - one back xx I feel so reassured having these threads to make contact with others in similar situation. 
Fi x

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Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi Lollymum

Sorry to hear of your recent diagnosis, not surprised you're in shock. What sort of chemo are you having? I am fortunate to be able to have oral chemo as my veins are also knackered from FEC-T the 1st time round.

I too have liver mets plus a few others (lungs, lymph nodes and bones). It's been 16 months since my secondary DX and I do feel better now than I did at the beginning when I was in quite a lot of pain.

I suppose the SE depend on your chemo but my main issue is fatigue - permanently knackered tbh.  They say most treatment for secondaries are gentler than the ones they use for primaries.

Wishing you the best of luck and sending you a big hug.

Paula

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi, 

On my third anniversary of my 2014 diagnosis of primary bc I went to A&E with severe pain on my right hand side, and I have been diagnosed with secondary cancer on my liver.  I've spent the past few days feeling numb with shock, then following blood tests was admitted to hospital with very high calcium levels which my oncologist believes might be bone mets. I've had no bone pain, and my ct scan shows liver mets (lots) and lymph node enlargement in my sternam. My oncol can't see any indication of bone mets on my ct scan, which she says is unusual, but a bone scan is booked for Tuesday.  Everything is happening so fast. I have my port fitted on Wednesday as my veins are so bad from last chemo, and then chemo on Friday. 

I am so scared (especially when the pain is bad).  I'm trying to be positive and just get on with everything, but inside I'm dreading all the chemo and the feeling awful again.   I've been offered counselling to help with processing it all.  I can't bear to see my family go through the strain yet again. My daughter is just about to take A levels this summer.   I don't know if I'm posting in the right place but any info on the treatment SEs much appreciated. 

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Good evening ladies, have taken my quantity of amitriptyline and Naproxen but still in pain and unable to drop off to sleep despite being shattered following more radiotherapy. So thought I would see if anyone else was about.

 

I play a word game with a friend of mine on the iPad. We started 4 years ago when I was first diagnosed as a distraction and a way of keeping my mind occupied on something other than being ill. We have known each other since we were small children, it's funny how some friends just know what to do without really saying or doing anything extraordinary.

 

Before this diagnosis, I could never quite understand how those with stage 4 like myself could relish just a normal conversation about everyday things, shopping, work, cooking etc and being in control of your illness. Now though, I get it! To discuss everyday activities, to laugh and have fun help you forget, just long enough to carry on as normal. Being in charge of who to tell, what and when, is the only part of this bastard diagnosis that you can determine, own, it's yours, to do with as you wish and no one else has the right to do that.

 

So, I am going to try and sleep now and wish my cancer to leave me alone and go to hell! Best it does as I say or it will be sorry! I am not going down without another fight!! Be strong ladies, wishing you well, goodnight. 

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi sue,just wanted to say hi and welcome..we wish you weren't having to post on here of course but you will find  a wealth of support.you are already being inspirational with your amazing attitude.I am a glass half empty person but people like you do make me buck up,even though I relapse a lot.I was diagnosed in 2011 and in Jan 2014 went to my go cos I had a small lump in the sternum area. I was told it was a sebaceous cyst.this was also echoed by my Inc and breast surgeon until the July when it was finally confirmed as skin mets. Not one of the had an alarm bell ringing saying 'biopsy now'!! I was originally er+ but changed to triple negative and was only told about that 6 months later. Oh how I wish I had shouted loud then like I do now.look forward to reading your posts.xx

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Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

That sounds great, if I can work out where the private threads are! Xx
Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Good to hear from you Paula, I am 10years your senior but again, another positive message to inspire. I have always been strong and positive, shall enjoy my new found friendships! Xx
Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi Sue

I did get fobbed off for a while till I had chest pains caused by clots on my lungs. Actually went to BCN rather than GP and got excellent treatment from that point on.

My primary was worse, had been going to GP for a year and a half with painful armpit and not once did he even mention a possibility of cancer. (He retired shortly after my diagnosis thank heavens).

What I've taken from the whole experience is that we know when something is wrong and need to be assertive when it comes to treatment. I won't hesitate these days to speak up if I don't agree with what's happening, not like my old passive self who would just say thank you doctor and go on my way :-).

I am 15 months into my treatment for secondaries and doing well on bone strengthening injections for my bone mets and oral chemo for lung, liver and lymph nodes. Feeling better than I did at dx and enjoying a slower pace of life since retiring at the grand old age of 47.

Wishing you all the best. ((((Hugs)))))

Paula

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hello sue
I hope that more ladies reply and help you through all this ..believe me there are lots of ladies like ourselves that got overlooked with our aches ..I must confess I didn't push much at the time and just kept popping paracetamol as we were moving house and then I sort of put the hip pain on the back burner so I must accept I was partly to blame !!
As you are triple negative ..hormone therapies like letrozole and tamox etc won't feature in your treatment so hopefully the denosumab will keep the bone Mets under control but then there are lots of chemos that can be called in at a later stage if you need them. I call them the big guns !!!!
Anyway ..hopefully you will enjoy this forum and maybe join in the private thread and we have games, gardening clubs and all sorts running ...even a book club.
There is a thread called bone Mets ..please join in ...we " metsers" all meet there for a lot of banter and fun ..as well as the serious stuff !!
Carolyn xxxxx
Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi Caroline,

thank you for the quick response. I had my mastectomy in 2013 but have been in pain and my ability to walk etc has dramatically reduced over the past two years. I was even running 5k raising money for breast cancer but it would appear, like you, I was diagnosed as having all kinds of ailments. What makes me so cross is at the end of each consultation I would ask, are you sure the cancer isn't back? Each time the response was similar, we are all getting older, let's not look on the negative. Thankfully when I contacted the breast nurses myself they were amazing! They contacted my oncologist and am now on injections of denosumab, Calcium tablets to chew, naproxen and anatryptalin. I cannot thank them enough as I swear I thought I was going mad! However, I am where I am and will fight again. Your response has given me new hope and tomorrow, my husband and I have the awful task of telling our children. Not easy at the best of times but I can give them a positive bit of info by telling them a bit about your story! 

Thank you again and look forward to many more conversations on this, our next adventure! 

Best wishes, Sue xx

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hello sue
Sorry you haven't received any replies ..it's quiet here at the moment ..it's half term and lots of younger ladies with kids to entertain!
I'm.not triple negative like you but do have extensive bone Mets which like you got overlooked for a year ...I had hip pain and was dx with arthritis, sciatica and nerve damage etx etc and as my primary was eleven years previously ..was missed. By the time I got the scan ..I had a cracked pelvis, hip that was like honeycomb and a hole in femur which meant a emergency op for a pin to be put in to protect it from all collapsing !!
Anyway 15 months later I'm still here and on leyrozole and denosumab bone injections.
I don't take any pain relief apart from a hot water bottle sometimes !!
I'm afraid its the new way of life and we being women ..just get on with it !!
Anyway welcome to the forum and you will find a lot of kindness and support .
Carolyn xxx
Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi ladies, feel like the new kid on the block but just reading through your replies to each other makes me feel as if I have found some long distant family!

Being a few steps behind possibly, or in front (will know more tomorrow), stay positive is my first bit of support!

Even when it is difficult to see a good side to what is happening,

I find writing very therapeutic. I have decided that even though I intend to beat this until medicine catches up with cancer, I am making a book for my unborn grandchild. Things that others may not know about me. Favourite poems, music, songs, words and a potted history of family with memory joggers for others to say, oh yes, I remember that! 

I had triple neg back in 2013 with 12/15 lymph nodes affected. Chemo was a rough ride but I am a fighter, as all of you must be too. Then radiotherapy and a prognosis of 30% of making it 10 years. That was a red rag to a bull, I was not going to be beaten by cancer!!

 

For the past 18 months I have been back and forth to my GP with pain in my foot then hip and spine. I have been diagnosed with everything from plantar fasciitis to bursitis. I have seen osteopaths, podiatrists and colonoscopists. Finally in desperation I managed to get back in touch with the breast care nurses and since then it has been a roller coaster ride. Initially oncologist could find nothing wrong with my bloods but to be sure he hadn't missed anything requested an MRI and CT. Sure enough my gut instinct of 'listening to my body' was right and the cancer was back in my pelvis and hip. Unfortunately because it was not caught earlier, my bones have very little holding me up but I am starting injections and radiotherapy to try and increase my bones. 

 

Not sure I can add much to offer reassurance but I do think a positive attitude definately scares cancer and I intend to fight once again especially as I found out at Christmas I am to be a grandmother for the first time and I intend to be around for that!! 

 

I would be interested to see if anyone else had problems getting their local GP's to listen and take them seriously. I saw three different GP's and asked every single time if it could be the cancer coming back, only to be given another possible prognosis. I truly thought I was going mad or worse, becoming a hypochondriac! If nothing else, I would like for GP's to be made aware of how much more vulnerable Triple Negatives are. 

 

Wishing you all a healthier 2017, Sue

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi Abney, i have tried to look into immunotherapy but seems to be little to go atr at the moment. I am triple neg mets to skin, pleura and bone but there may be something for you in the trials line. I think it is still in its infancy although i know palces abraod seem to be using immunotherapy but as they are private it is very very expensive!! Awful to think a lot of the time our lives depend on money and budgets etc. Will keep looking into immumo and if you do and come up with anyhtinga let us know. Keep your chin up.

Marlene rose...thanks for sharing that you have hsd mets for 4 years...gives us all hope. Wish i could do as well as FF with 11 years!!

Moijan, i too am worried about chemo breaks...as you know i'm on one now. Everything they have tried before has become resistant so i just hope thats not the case with whatever they choose to try me on next. Trouble is i'm already at the 're-visiting' stage so it doesnt sound to hopeful.

Karen, hope you are a little more settled now and coming to terms with things. If i'm honest i dont think you ever do..you just learn to adapt and live with it. Sending you and everyone love and hugs. xx

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Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi MarleneRose, nice to hear from you. Sounds as if you have been having a tough time. Its nice to hear tho that you have had some success with the chemo. Sounds as if youve done well with such a long history.

 

I am doing quite well on Eribulin, just now, but that too is not a cure either. I do quite a bit of praying too. 

 

Abney, hope you are feeling a bit better and are having a good weekendxxx

 

hugs, Moijanxx

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Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi:  Sorry to hear of your secondary mets and just starting treatment.  Please feel free to contact me as I am in my mets and doing ok.  It is hard to do since we have done treatment before but I will pray for you and try and contact again to see how it is going.  I have been in treatment for Stage 4 Mets for almost 4 years so there are treatments to help us, not cure us, but help us live longer so hang on to the word HOPE.  That golden key is going to save all of us some day.

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Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Body:  I am also with secondary mets.  Was diagnosed with it four years ago.  14 years was ok with first BC then it reformed and made cancer soldiers again.  Bummer, I hate it.  At first I was able to take Hormone Therapy for about 2 and  one half years as my treatment.  That was so good, because the treatments were either oral or a shot.  Then markers, started moving up again and dr. said she would have to treat the MC with systemic chemotherapy.  Was and has been a bummer, but thus far has saved my life.  Without Taxol and Avastin as main treatment I am sure I would have left this earthly setting.  I really like living up until about two and one half months ago when my treatments of Avastin and Taxol are starting to become maybe just tad to strong, and for the first time I have gotten a sore throat and cold.  I think I have to start juicing again, but have been lazy for doing it. It truly does help.  Shame on me for being lazy, got a cold now, but at least sore throat is gone.

 

I hope they are able to start you on hormone therapy inhibitors rather than the chemo right away.  Let me know your progress.

 

Marlene

 

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Ff, I know you are right, but if the cancer gets resistant, not surewhat else I can have! They wont give us Ibrance...too expensive. Im just trying to get the best mileage from the drug, ive had three drugs get resistant and its spooky, as you know.

 

moijanxx

 

ps they got resistant after a break each timexx

Community Champion

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Moijan, In the 11 years I've been at this, I've had one 10 month break from chemo, 2 years of oral cap and now 15 months of penicillin. That makes 7 years of infusion. Not fun!!!! But I'm here! I will every year when on infusion, I would skip the month of December! I used to read on this site of woman taking breaks all the time to go on vacation. Their oncs said they had to enjoy life. That was when I asked my onc about it. He said bc my cancer was slow growing he didn't have a problem with it! Dec 2014 I couldn't bc I had just started gemcitibine in Nov., so I didn't even ask. I figured it needed to get working. Maybe, if things are going OK you could ask and plan something. FF

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi Abney

 

yes have heard sbout immunotherapy, its early days yet. I think its a bit like using a vaccine, ie finding  the driver cels, growing them outside the body, and altering them somehow so they attack cancer cells, but could be wrong!

 

i think the Marsden may be one of the hosps looking at  it, but am not sure. Im also not clear as to which cancer types its best for, ie, large concrete tumours or wether it also targets wide spread tiny mets...I have both in my liver.

 

you could look on Cancer Research uk and look at the trials bit, see where these are...... My guess is you might have to pay for it at the moment...but it spells out hope for us all.

 

so glad you have a good friend like that one you mention, I hope you feel a little better?

 

love, Moijanxx

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi Moijan

 

im pleased to hear you are doing well but im sorry to hear it takes up a lot of your time and is restricting. Sending a big hug your way.  

 

I have spent the last 3 days with my friend who had BC 8 years ago. Thankfully she hasn't got secondaries but it is always a worry to her. She has been a major support to me and understands all my fears however she is being really positive which is what I need. She has mentioned Immunatherapy - not sure if I have spelt it right but have you heard about this treatment? Meant to be very good.

 

It is really good chatting with you and all the other lovely ladies on here.

 

sending lots of love and hugs xxx 

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi Abney,

 

thank you for asking, just currently, im apparently doing very well on Eribuln...

 

But I would much rather be a Cape or a Letrozole lady, as 2/3 weeks Im attached to a drip for the drug, it only takes 30 mins max and usually im out of there pretty soon, but I miss being able to just go away for as long as I like. Cant plan holidays etc. and not really willing to take time out in case the cancer gets resistant.

 

i know im pretty blessed really, as things are chugging along.

 

I hope you are feeling a little better? And Karen too? Time seems to help us adjust and of course  we are all here for each other which I find really nice...

 

love and hugsxx

 

Moijanxx

 

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Thank you Moijan for your really lovely message. It is good to know there is some light in this darkness. My cough was there already as I have lung Mets. I'm really hoping Cape can shrink the little buggers which will mean the cough will also go.

Thank you so much for all your support. How are you getting on? Sending you a big hug xx
Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi lovely Abney and Karen,

 

Abney, I DO get a cough sometimes, often just before my chemo is due, strangely enough! I am on Eribulin and Ive noticed that my vocal chords are pretty mucusy when .i sing lower notes! Another lady said she gets just the same!

 

i think these chemos may well temporarily affect us in different ways.

 

With Cape...I cant remember but it makes sense it might because you are swallowing it arnt you. So try and up the amount of water you are taking...esp when you take the tabs to Flush them quickly past the voicebox and throat.

 

Abney and Karen, re the fears and tears...just want to say that I know it often sounds as if us 

 longer term cancer ladies sound very well adjusted and more adapted to our situation...than yourselves...and that can make you feel a bit on your own.  

 

What you are going through, we still do go through every now and then...but the initial shock does shake your confidence and it takes a little bit of time to get that back.

 

everyone does that in their own way, but yes chatting with others in similar stages can really help, as well as meeting up with good friends who havent got cancer, as they will bring back some normality into you lives and 

Help Balance thingsxxx

 

I was one of the very most frightened people when I was first diagnosed. I remember how lonely I felt especially at night. This Will get easier, you Will feel you have some control as your treatment progresses.

 

we are all here for you, keep postingxx

 

love and hugs

Moijanxx

 

 

 

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi abney

Thank you for your lovely message no I have not got a cough, chest Is a little tight it the headaches and aches and pains that are giving me grief.

Please keep in touch I will let you know when I start the cape seeing oncologist next Thursday to let me know when I starting hoping x praying that my next scan won't be till after Xmas so I can enjoy a good Xmas with family.

Keep smiling sure we will get through this together

Lots love karen xx
Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi Karen I'm so sorry you are on this journey too but this forum is such a support and makes you realise you are so not alone. Thankfully my headaches have cleared... I stopped taking ibuprofen and tramodol- also have limited my paracetamol intake as I think that's what was causing it. I was on those tablets for about 5 weeks and taking the max- had to stop pain some way!! I can't be sure that was the culprit for headaches but the fact they have stopped is making me think yes it was!!
I am on my week break from Cap. If I'm honest I am very exhausted and my cough is just awful - I don't get any sleep because of it and it's causing me to be sick but I don't think any of this is to do with Cape but the actual cough. Have you got a cough? This is what is really getting me down as its so dibilitating. I do hope it will go as its a constant reminder of the gremlin living inside of me! Oh I know what you mean about the crying. I just can't stop as I really still am in shock! And I just feel so grey:( but I hope once Cape does its work and the symptoms subside I will feel more positive. When I first spoke to onc he said it could take 6-8 weeks for me to feel better. So I need to be patient!!

Wishing you lots of luck on Cape and it will be really good to support each other. Please let me know how you get on. Have you seen the thread for Cape? Lots of lovely ladies on there who have been on it for years and have some fab advice.

Sending you a big hug
Abney xxxx
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Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi Abney

I was diagnosed with sbc in bones in July then lung in October I am due to start on cape next week and am petrified like you I ache everywhere and got bad headache think this the stress can't stop crying, so you not on your own

Would love to keep in touch and go on the cape journey together

Sending big love

Karen xxx
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Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Abney, just wanted to join the other ladies and say Hi and welcome..none of us want to be here but we all support each other through good times and bad and hopefully we can do the same for you. I had cape when i was first diagnosed as SBC and it worked whiole i was on it..i coped ok with it although i found eating at times when tblets were due was a pain. I am sure most of your aches and pains are stress related and that tghe cape will soon kick in and start working. Please rant and rave as much as you like, we will all be listening.

Let us know how things go. Lots of love. x

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Yes I agree with this - I get lots of random pains and a cough around scan time. Have no symptoms any other time!!
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Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

I was diagnosed with lung mets in February 2013 - I was stable on Cape and Tyverb for 18 months and have been stable since March 2015 on weekly Taxol (switched due to tiny progression). I feel well and am active - I walk by the sea a lot with my dog Molly. I have two boys (19 and 16) who were 14 and 11 on my orginal diagnosis, hope that gives you some hope xx
Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi Abney,

 

Sorry you've had to join us but you have come to the right place for support!

 

I was diagosed with lung mets almost a year ago. At the time I was coughing really badly. As the cancer has responded to treatment, it's got so much better. But at the time, I was prescribed some coedine linctus which did help. I don't know if it's compatible with your chemo but it might be worth asking.

 

Hang in there!

 

Marion

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Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

I think October is a hard month too it's good they are raising awareness for breast cancer but you find its on every programme and you can't get away from it x x
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Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi abney I was like you a year ago I was on chemo for a full year diagnosed primary then secondary soon as primary chemo had finished so had to start all over again with chemo I was devastated but now I'm back working part time I'm back at the gym my hairs grew back and I feel a lot better. I have mets some in lungs and liver they have shrank last two scans my next one is beginning of November so I'm a bit stressed but trying to carry on as normal it does get easier love Julie x x
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Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Abney Sorry you're having a bad night. I woke up and saw your post so I'm sitting up in bed thinking about you and sending you hugs. It's all so scary which makes you feel worse and stops you sleeping. I sleep badly too. I don't have experience of your chemo but from what I read it takes a while to get it right and for things to settle down. I really hope things get better for you this week. Bonariensis xx

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Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Thank you so much lovely ladies for all your replies. It does help. I'm having a particularly bad night. I feel so ill and I can't sleep. I do wonder if it's my body adjusting to the drug??? I'm so sorry you are all on this journey too but I really appreciate the support and advice. xxxx
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Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hi Abney,

 

like you, I went through what seemed like a total freak out, just before i began my recent course of chemo.

 

its all very scary. I had just been bereaved and i had headaches, neck aches , cough and sore throat. i was really tearful and I couldnt understand how the docs could just say, go on this chemo, when

i felt so very ill.

 

like Funnyface says, stress and anxiety can cause all those symptoms and once id had my first cycle of chemo, i felt so much better.  As the others say, Cape is a really good chemo and I wish you the very best response.

 

we do all go through these awful fears, my cancer journey started in 2001 and the cancer came back after 10 yrars, but however long youve bern travelling on this particulat train, fear still catches you out!

 

do keep posting on the forum, lots of lovely ladies will be here to support you.

 

Best wishes,

Moijanxx

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hello Abney

Welcome to our forum I am sorry you have had to join us. As alot of ladies have given you their account of capecitabine and given you the thread to go on I wish you success with the treatment. Many ladies have lived a long time with secondaries and I hope you will be one of those.

 

You will feel frightened especially having a young autistic boy the other ladies have explained your fear of all the ach and pains you feel we all go through that. Do you have someone who helps you with your son he will give you the strength to try to be normal although there may be times when you will need to rest. But you can still be mummy for a long time and come on the forum to vent your frustrations we are here to share your downs and ups

 

Love and ((((hugs))))  xxx

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hello Abney👍
I'm a secondary lady too, I understand your anxiety and concern for the future. I've done all the chemo and rads first time around and now I'm into my 16 month of Capecitabine. I have over time learnt how to manage my dose
Which is 1800 mg morning and night. My SE are aches and fatigue and headaches and generally feeling fed up. The worst time is between day 10 - 14 and my week off can be bad at times too as the toxicity has built up. This passes in time for the next round to start again! I have halved my work to 12 hours per
Week but due to stage 4 diagnosis we are entitled to claim the benefit of PIP. Ask
Me
More on that if you need information?
If I get enough sleep
And pace myself I can mange well, I am
On strong painkillers and these really help me, I've got past the worry of becoming addicted to them because I probably am by now but this is a very serious and painful illness so I'm not going to have hang ups over the stigma of painkillers etc they help my mind too rightly or wrongly but I'm coping with they're help. I'm on an antidepressant as well. Plus I have a strong faith which gives me peace and hope whatever my future holds. Surprisingly exercising has been a God send which surprised me as I thought it would finish me off but instead it energies me! I hope by telling you a little about myself it has helped you Abney, keep me posted about your progress, love Emma xx

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

HI Abney,

 

Just want to say hello really.  I'm newly diagnosed with secondary and  I wonder if every twinge I feel is cancer or just ordinary stuff.  You were only diagnosed a month ago so it's natural to feel down.  Personally, I went to my GP and am now on antidepressants.  After about two weeks I'm being to think they are kicking in and I can find my "new normal~ and enjoy being alive again. 

 

I suppose my message is ask for all the help that's available to you.  

 

Stacey

 

 

Community Champion

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Abney, Welcome! I hope coming here will help you release some of that fear. Not surprised at all that you are having headaches. Emotional stress, medication and stress from coughing all could add up to those headaches. I wonder also if the swollen lymph nodes in neck could be creating the numbness. Strange things can happen from this cancer that even doctors can't explain. I have lung mets too. My lymph nodes in my chest area are involved too, but not my neck. I use to have this weird sneeze! I would get a tickle in my throat and then sneeze, but the sneeze came out my mouth not my nose. Oncologist kept saying he didn't think it was from my cancer. Well I didn't have it before my cancer . I could sneeze at least 100x a day. Then in 2012 I needed radiation to shrink a tumor. A few doses of radiation and the coughing was gone. It has  been gone for 4 years now and I had it for 7 years. They claim they don't know how radiation could have fixed it. I think that tumor must have been pushing on a nerve and when it shrunk it stopped agitating it. Another weird thing to the story was when I got a cold the sneeze would go away. When the cold was gone the sneeze would work its way  back. I would start with one or two sneezes a day by the end of 2 weeks I would be back full force. I tell you this story, so you know strange unexplainable things happen. Please don't keep suffering with your  headache, ask for help with it. I will say before cancer I didn't even like to any kind of medicine, since cancer I realize there s no need to suffer! Good luck! FF

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Thank you so much Caroline. I really appreciate your reply and advice. I will head over to the treatments thread! Xxx

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Whoops ..Barton beat me to replying so a bit of a duplication..
Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hello Abney
Welcome to our family of kindness and support ..sorry you have had to join us here but there is a whole lot of info and support.
First of all ..suggest you go on the cape threads where the ladies there all can help you with the se of the chemo pill you are taking.
Hopefully a lot of your symptoms are stress at the dx and not the secondaries. Stress and shock can really cause a lot of unwelcome problems.
It's always harder when there are young children to think of but trust your oncologist , ask lots of questions and you will find a lot of very good info within this website too.
The capebecine thread is within " treatments" board ..it's been running for a very long time and most things are covered there and the ladies are always helpful .
Take a day at a time .....
Carolyn xxxx
Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Thank you Barton for getting back to me and also to hear your advice and experience. I'm really down at the moment so I really appreciate the support. I will definitely come and and join the thread. 

 

Thank you again xxxx

Member

Re: Recently diagnosed with secondary mets and just started treatment - could do with a bit of suppo

Hello Abney, sorry to read you have had to join us, and so sorry you are really going through the mill. I am on Cape. I have, in the past, had some nasty headaches, but they are a known se of Cape. They didn't last long, but were quite "sharp" while they lasted. They gradually subsided as an se in my case. However, please do not suffer in silence - please tell your Onc, and stress how worried you are. It is common that Oncs generally start you off on as high a dose as they think you can tolerate, then gradually reduce it if necessary.

 

Please join us on the Xeloda/Capecitabine thread in the Treatments section of the Secondaries area. There are some very wise and helpful ladies on there.

 

Wishing you the best.

 

Hugs. Barton.x

 

Member

Recently diagnosed with secondary mets and just started treatment - could do with a bit of support.

Hello I'm new here and could just do with a bit of support. I was diagnosed a month ago with secondary mets in the lungs, chest/neck lymph nodes and and lymph node in sternum. My primary was in 2014 and after a lumpectomy, lympth nodes removed from armpit, 6 rounds of chemo and 20 radiotherapy I was given "the all clear"! As it was triple negative I wasn't put on any meds. Start of this year after having the flu I never felt right and had consistent pains in my chest and back. After clear chest X-rays, mammograms and a bone scan my consultant referred me for a pet scan which is when I was diagnosed. I'm completely floored - didn't see that result and scared. I have a 5 year old autistic boy and I just want to be his mum not live in this nightmare again:(( I've been in terrible pain and I have an awful cough- caused by the lungs. This has now started giving me terrible headaches, jaw ache and ear ache. obi this all frightening me but pet scan didn't show activity in the brain. Nurses think it is the strain of coughing so much. I just started my treatment which is Capecitabine. Feeling horrendous:(( not sure if this is my symptoms still or the combination of the chemo too. Just feel like I will never feel better again. I have no energy, headaches, coughing, sore throat and just feel battered. Just wondering how long does it take to feel normal again, does it work? Anyone else experiencing headaches? I want to get my positivity back but I'm struggling. So sorry for the down post:(