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Not good news

48 REPLIES 48
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Re: Not good news

Oh Bev,

 

How awful, my heart really goes out to you.  I am sending positive vibes your way, I truly hope you have many more Christmas dinners to come.

 

Take it easy xx

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Re: Not good news

Thanks for your commets ladies. i have alrady had a second opinion as i lost all confidence in curent team after my 6th month delay due to misdiagosis.The second onc basically agreed that my treatment plan was correct. I have now had copy of my gp letter and although he has said he is still against stayingon cap everything will be reviewed when i have had scans etc at end of this round of treatment. For the lady that askes (sorry cant see your name now and chemo brain has kicked in!!) i live in leics and am being treated i staffs. x

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Re: Not good news

Cw,that's a load of cods wallop . Belinda had 4 1/2 years on cap and her good friend has 8 years on cap.
PLEASE shout loud at them or get another opinion. It's shocking how hospitals aren't even on same page regarding treatments !
Hugs,Helen xxx
Ps ring bcc helpline to talk to their team . They are really knowledgeable and can give you fact to tell them. Xxxx
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Glo
Member

Re: Not good news

I'm not on cap, but it was mentioned to me as a possible after my present treatment of everolimus/exemestane, and my BCN/ONC said you can stay on it indefinitely.
Def a second opinion needed! Where abuts do you live?
Glo

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Re: Not good news

hi .....CW17...I would agree with second opinion......I have bone mets (diagnosed nearly 4 years ago when I was 51 after primary diagnosis aged 45)...after one year on hormone treatment I started Capecitabine in Feb 2012 and have been on it since with stable scans and markers....I have had a few breaks varying between 1week and 3 weeks but restarted it each time before markers have changed.......different oncs, different treatmentsand different plans!...........your second opinion should be with an onc who meets within a different MDT...otherwisw essentially the same opinion!xx

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Community Champion

Re: Not good news

CW, You definitely need a 2nd opinion. Don't hesitate.

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Re: Not good news

cw17...you must get a second opinion!! I certainly wouldn't be happy with his decision. Don't hesitate...can u speak to someone on monday?
Love bev xxx
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Re: Not good news

CW, maybe you could seek a 2nd opinion?? Your onc seems out of touch if I might say so...

A break from capecitabine is indeed possible, I speak from experience.  I had 2 years - bone and liver mets stable, tumour markers below 100 (which, for me, is good) I asked to stop because of SEs, my skin is quite sensitive to chemo and I had had enough of hand-foot problems.  My onc told me that the longer the break before re-starting cape, the more likely it is to work 2nd time around.  After 3 other treatments -  tamoxifen (which didn't work for me), eribulin IV chemo, and letrozole (also 2nd time around) I re-started cape in July 2014 at same dose as before.  Liver function results have improved so it seems to be working again Smiley Happy

Hope this helps.

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Re: Not good news

Thanks ladies..saw my onc yesterday and mentioned it again: he was adamant i cant sty on it after 6 cycles. He said he has never prescribed it for anyone longer than 10 cycles. The nurse in with him did join in by saying "but you can have a break from cape and then start it again" but he 'shouted her down'. He seemed to think radiotherapy and letrozole would be enough. This worries me as i've already been on arimidex and aromasin and they clearly didnt work!! i really do feel that, even if this treatment does work, i will then be let until it rears its head again by which time it would be too late??

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Community Champion

Re: Not good news

CW, I had 5 years out of vinorelbine and 2 years out of cap! Also was friends with Marilf who was the queen if cap! Good luck! Funnyface

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Re: Not good news

cw I would love to meet your chemo nurse. :-) I was on Cap for four and a half years my late friend, used to post here as marilf, was on Cap for eight plus years. When it does work Cap can work for a very long time. I have other friends where Cap never made a difference but they then had success with other chemo therapies. X
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Re: Not good news

Thanks....I've heard i can probably give myself the neulasta injections after the first but think I'd prefer district nurse to do all 3.
By the way EJ81..I'm sure I've spoken to someone on here who has been on Cape for 2 years and someone else over 4 yrs! So i wouldnt take much notice of your bcn....hope someone can come on and verify that for you.
by the way....what happens when you come to the end of your course of chemo (the 3 or 6 cycles?)
Do you then have nothing and just wait for them to grow or spread again??
Love bev xxx
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Re: Not good news

Hi so sorry to hear your news...if its any consolation i had the injections during my fec treatment 3 years ago..i did them myself and was fine. i am now on dotaxol..coming up tp my 6th and last one and although i feel really poorly for the first week i dont think its as bad as fec. Because i was so sick on fec my onc prescribed Aprepitant from the beginning of this round of treatment. I'm also on cape and have been told i can only have 10 cycles...my chemo nurse thought i was bomkers when i told her i'd rad about people being on it for years. Its really scary not knowing if these treatments are working isnt it. Sty srong..i'm sure you will be ok with dotaxol. x

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Re: Not good news

Bev,
Just seen this thread - how disappointing and frustrating! Recently had similar experience of chemo not working. At least you (and I) were scanned after only a few months so you're not carrying on with something that isn't doing the job.
Deep breath, and on to the next one. I'm keeping everything crossed for you that this is the one for you and you'll be posting happy news on here soon. Xxx
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Re: Not good news

Thank you jo, tink and funnyface.
Thats so encouraging FF....sorry to hear though that you had such a rough time in 2012. But it just goes to prove how tough we really are and how much our bodies can take!
Hope i get the same positive results 💖
Love and hugz...bev xxxx
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Community Champion

Re: Not good news

Bev, I just came on and saw all the supportive posts to you. I'm sorry that you didn't get a very good response to your chemo. I will refresh you, I have lung mets too and xeloda just failed me too. I started gemcitibine today. What I wanted to tell you was that back in 2012 my right lung collapsed, I did radiation and got pneumonitis from radiation and put my heart and lungs in a spin. I landed in the hospital and came home on O2. They said my lung would most likely not reinflate, well it did! One year later after this my oncologist told me I had been in really bad shape back then and my life had been in jeopardy. I only tell you all this to give you hope and put the fight back in you!! You can do this! I'm hoping this chemo kicks a$$! I haven't had that drug yet, so I have no advice! Hugs FF

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Re: Not good news

Bev, just came on and saw your post.

 

I'm so sorry cape didn't work but as the other ladies have said there will be another treatment that will work for you.

 

I can't add much that hasn't already been said but wanted to say that I am thinking of you and hope that your new treatment kicks the uggers into touch.

 

(((Bev)))

 

Tink x

 

 

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Re: Not good news

Bev - so sorry to hear your news and just wanted to add my support along with all the lovely people who have posted. Stay strong and we are all here for you.
Sending best wishes to you and your family
Jo xx
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Re: Not good news

Thank you so much everyone....youve really made me feel much more positive. ..honestly. and thank you LD for your lovely words and huge welcome to our lovely group.
Nicky glad to hear its doable. I had the nasty gsf jabs 9 years ago with FEC but this time theyre giving me neulasta which boosts the white blood cells immediately with no nasty se's. Its more expensive than gsf so I'm lucky!
Also theyre giving me the new Paxman scalp cooler instead of old coldcap. That didnt work for me 9 yrs ago either! This one almost guarantees to keep your hair...so I'll give it a try. They wet your hair and apply conditioner first. I can always resort to my wig...its still nice but they have offered me a voucher as well for a new one in case i do lose my hair.
Good luck to you all having results and tests this week and a huge thank you again for bucking me up!
Bev xxxxxxxxxx
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Re: Not good news

Bev-although I'm a newbie here I've been reading all your old posts and you come across as such a positive caring person so I want to add my support like all the other lovely ladies. As I spend so much time googling these days, I know there are definitely lots of treatments available for you to try and they will work. From all the responses you are well loved on here and all your friends will help you get through this setback and treatment. Sending a big hug your way. LD x
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Re: Not good news

Oh,bev,sweetheart ,I've been thinking of you all night. Please stay positive I know it's hard. This chemo WILL work it's the big guns chemo and it will blast the little #s .
We are all here for you and share your pain.
Stay strong lovely lady ,Helen xxxxxxxxxxx
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Re: Not good news

Hi Bev, so sorry to hear your bad news and I know what a blow this must be for you and your family but I'm glad they are moving you onto another chemo that should be harder hitting on the little uggers.  I'm currently on docetaxol (with Herceptin and Perjeta) and just had my 4th cycle last week.  It's doable, probably more so than FEC which I had 6 years ago and certainly no sickness or nausea.  On FEC I needed the GCSF (?) injections as I was so low for neuts and wbc but this time around they are both very high so I've not needed them, and this was after going straight from Cape onto Docetaxal so they hadn't had much time to recover.  Wishing you all the best but do ask any questions about the chemo and its SEs, I'm well versed in it all now!  BTW you will lose your hair so think about getting organised with a wig or headcoverings, at least they keep your head warm in this freezing weather! Take care

Nicky xx

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Re: Not good news

Bev, so sorry to hear your news. We were all "rooting" for you, as the Yanks say. I'm afraid I don't have anything different to add to what other people have said, but I just want to emphasise that we do have lots more options left, as my Onc.told me. There are many more treatments out there, and more being developed every day. Don't forget how much money is being given to cancer research. And of COURSE you will have more than this Christmas ahead of you! We all know what it's like with the bad news, so you go ahead and cry if you want to. Hugs from me, too, and we are all thinking of you. Best wishes, Barton.x

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Re: Not good news

Oh Bev so sorry to hear your news, its only natural to be upset and scared,.
Stay strong flower i don't know anything about the kind of treatment you are having but i know there is lots of different types out there and they will find the right one for you....oh and you will certainly be be here to celebrate christmas!!!
sending you a huge hug love Janette x x
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Re: Not good news

Bev i am just catching up on recent posts and am so sorry to hear your news. I dont know anything about the treatment you will have but please dont fear the worst about it...easy for me to say i know. Also this is NOT your last xmas! I can only echo the other ladies in saying there are many other treatment plans out there and what works for one lady doesnt work for another. Please stay positive xxx
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Re: Not good news

Thank you too Emperortooco. Everyone is so lovely on here and keen to give encouragement. I really appreciate it. I feel so lost at the moment. xxxx
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Re: Not good news

Thank you Gillg. I hope i can tolerate it just as well. Ive been reading about the side effects and the Onc told me i could be quite poorly. Im dreading it. Are you due a scan soon to see if its working? How many will you be having? They told me 3 to begin with but if its seen to be working...may give me another 3. Xxxxx
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Re: Not good news

Bev, just felt as though I had to reply to your news. Your words to me following my thread on end of life following the very recent loss of my beautiful mother truly touched my heart. I just want you to know that I,m thinking of you and as so many have said this will not be your last xmas, there are many options still available to you and by the sound of it there is much love for you on here, big hugs to you xxxx

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Re: Not good news

I'm so sorry to hear of your progression, being newly dx I am still at acceptance stage but firmly believe that treatments are out there and you will find your magic potion. I have just had my 3 rd dose of docetaxel and find it ok. No real side effects just a build up of tiredness at the moment. Just sending hugs....xxx
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Re: Not good news

Thank you so much chocolates and porky. I'm just praying this one will work...i dont care how awful it may make me feel...i just want to get through it and see a future of sorts....it does sound as though this could be more effective.
I feel drained..will take a sleeping tab soon and go to bed xxx
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Re: Not good news

((((((((Bev)))))))), oh this has made me cry. I'm so sorry at this awful news. I so wanted the Cape to work for you but I also know ladies where it hasn't. Thank goodness your hospital scans to check so it has been picked up already. Some hospitals wait a few more months so that is a positive. Let the tears come now and get as much rest as possible - allow yourself to accept this latest setback in your own time. However, you have a new treatment plan and that is going to work. Docetaxol was awful for me but boy did it knock the uggers into outer space. The success rate is much higher with this. It can be difficult but once you have got over this little hiccup you will be able to manage it Bev. You need a few days though so don't be hard on yourself. Your family are there for you too - they will help you and you must let them on days when you don't feel so well. I kept going on this chemo because I visualised it killing the Cancer - that kept me going.

Look after yourself Bev - we are all here holding your hand xxxxxxx
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Re: Not good news

Bev Im so sorry to hear your news but please dont think this will be your last Christmas - as everybody has said there are lots of other treatments to try and new ones coming on stream all the time. I had docetaxol in March to June this year and was dreading it. It was the first chemo that I had had as I had a double whammy diagnosis three years ago which until then had been controlled by hormone treatments. The first dose was horrible - the main side effect for me being tiredness and headaches initially. I also had the injection to boost white blood cells which did make me ache. But after the first dose the others got easier, I think my body was more used to it and the breathlessness that I had had before I started went after the second dose. The scan at the end showed a really good response. So I will keep everything crossed that you have a similar experience.xx

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Re: Not good news

Dear Bev,
Sorry to hear your news, but you've got to kick *** with this god awful disease!!! As the others have said that some treatments respond better than others, there will be one for you!!!! Keep strong, we are all here for you.
Love
Julie xx
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Re: Not good news

Is anyone else on docetaxel or been on it that can advise on side effects and whether it worked where other chemos failed? xxx
Member

Re: Not good news

Bev, so very sorry to hear your news.

I can only echo what the others have said & hope that the next chemo gives good results.

A big hug,

Monica

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Re: Not good news

Dear Bev ,

Really feeling for you.

Thinking of you.

I am starting chemo again and really hating the thought .

Big hug xxxxx

Liz

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Re: Not good news

Thank you belinda and mrs blue...you certainly can give me a hug....please! Im still so tearful. Cant really take it in. I felt sure the cape was working. 😧
My children are so upset again now too. I hate hate hate what its doing to them x
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Re: Not good news

Thanks for your lovely kind words...so encouraging and i need that at the moment! I dont think that 3 months was very long before the cape stopped working.
If the next one doesnt last long either how long will i have??? There cant be many more options...so scary xx
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Re: Not good news

Bev - so sorry you've had rubbish news... may I echo Belinda's comment, some chemos don't work for some people.  I think many people whose mets didn't respond to Cape do well on docetaxel, and definitely vice versa (my oncs wouldn't give me docetaxel).

Do allow yourself to accept help (where appropriate) over Christmas etc. 

((hug)) if I may.

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Re: Not good news

Bev I'm really sorry to hear your news. I think, from reading of other's experiences over the years Capecitabine either works well or hardly at all, I know many people who have found it didn't work for them. They went on to have much more success with other chemo. Your new chemo is different again in every way and I hope this will be the right one to knock the mets back hard, while being as kind as possible to you. Good Luck, you will have so many here wishing you well.x
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Re: Not good news

Bev so sorry to hear your news no wonder you feel like crying.Think positve I know it's hard but we all react to Chemo differently and one Chemo might work for one person and not the next everybody reacts differently .this chemo will hopefully kick the little buggers and I'm sure this will not be your last Xmas as there are still plenty more treatments for you to try.
Stay strong lots of hugs coming your way
Kaye xxx
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Re: Not good news

Bev ,xxxxx you will get good news ,you just hang in there. This chemo will work.
Xxxxxxxx huge hugs xxxxxxx,Helen xxxxxx
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Re: Not good news

Thanks helen. ..i just feel that everyones having good results from cape but not me. I always seem to have bad news each time i go for results. I never seem to come out of there with a smile on my face 😯
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Re: Not good news

Dear Bev
I am sorry to read your news, don't forget our helpliners are here to help you during this difficult time so please feel free to call

0808 800 6000 9-5 weekdays 10-2 Saturdays

Take care
Lucy BCC

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Re: Not good news

Thank you desi and flo....yes my onc said the district nurse will come each time and give me the injection. I had it when i was on fec 9 years ago for the last 3 doses. Its so hard now to look on the bright side. Xx
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Re: Not good news

Oh bev,I'm so sorry about your news xxxxxxxxx this WILL NOT be your last Christmas so please don't think that.
This chemo will kick the #s to hell and back.
Massive hugs coming your way lovely lady,stay strong ,Helen xxxxxxxxxxxxxx
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Re: Not good news

Bev - I'm really sorry to hear your news as well. No wonder you feel desolate and like crying. The only thing I can say is that I found Docetaxel much easier than FEC. I had the blood cell boosters too. I was able to be much more active on Docetaxel and I didn't have any nausea or vomiting with it, unlike FEC. My mother gave me the first injection but after than I did them myself - you just pinch the skin on your tummy and the needle is really quite painless. I would suggest you get the District Nurse to do it for you first to show you what to do as the instruction leaflet doesn't make it clear exactly what to do.

 

Wait to see how you get on with it as we all react differently. I was told my latest chemo wouldn't make me sick or make my hair fall out - but it's done both. Also, just because one treatment doesn't work for you doesn't mean this one won't.

 

Warm wishes and hugs.

Flo

X

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Re: Not good news

Oh Bev im so sorry don't blame you for wanting to cry. Let it out then pick yourself back up. It will not be your last! I have these injections they can make you feel a little unwell at first but second time wasn't so bad. Sending you lots of love and big hugs xxxx
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Not good news

Bad news at clinic today...both tumours in lungs have grown by about 20-30%.!! Capecitabine hasnt worked. I feel desolate. Only been on it 4 months. Will be starting docetaxel next week highest dose....which means district nurse has to come the day after each one to inject me to boost bone marrow into producing white blood cells. Told me i wont be very well on it....i just feel like crying. Im sure this will be my last xmas. .... ...