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Not on chemo

AnneS
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Re: Not on chemo

Hi all,Sorry to hear about your infection Debs. I hope it clears up soon and you'll be back out in the garden but keep leaving the ironing to Ian - that can wait!!
So good to see you posting again Kate and so glad you are feeling a bit better. I hope you get to go home again soon.Nice to see you posting again as well Celeste.
I feel I've turned a corner myself during the past fortnight as I think my energy levels are gradually increasing thank goodness and my joints don't seem to be quite as painful apart from in the morning with my strange dance while I try to get my feet to plant firmly on the ground and go shuffling downstairs like an old lady!!A couple of weeks ago I just kept getting so tearful and just felt I had no energy at all and was frustrated as I know how precious this time off-chemo is and I want to enjoy it but it's a big effort when you're on your own. I've seen close friends who live away both yesterday and today which has bucked me up no end and although I'm tired, having been to a concert as well, am still up and it's after 11pm which is a miracle!!Am going away with my dog to a cottage in West Wales next week and it will be bittersweet as I've stayed in the same cottage a few times with my ex-husband and I'll lay some ghosts to rest - a friend will be up there for 2 days whilst we're there so that will be a nice distraction and the whole thing will be a challenge for me to drive there alone and master the driving whilst there as my ex used to do it all.
Anyway I'm rambling!! Have a good weekend all - I've just joined a new social and activity group and am going on a Pamper spa day on Easter Sunday so am looking forward to that - just hoping the place don't cause any problems once I disclose my illness!!
Take care,

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Re: Not on chemo

.... yes ~Kate, if they cannot sort out the appt for nxt week - and they cannot so far - then yes - up to the ward again for me!

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Re: Not on chemo

Poor Debs - hope the infection gets better soon. i hate it when health prof don't believe you when you say you are ill or feel you have an infection. We know our bodies best and what is normal for us.
I'm in a different place to the rest of you regarding tiredness so think I won't be contributing to that part.
It was useful to be reminded that chemo takes a long time to get over so thanks for that.
As for me, I've got a wee infection - why do they make antibiotics so big!!
Otherwise not much to report as seem quite stable at present which is a strange feeling in itself!!!
Celeste - sorry to hear about the cock up with your herceptin. I hope they can sort it out for you. Do you mean by 'starting again' that you need a booster dose?
Kate

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Re: Not on chemo

Well I'm not on chemo either, but I am on pamidronate and herceptin - although I may have to start all over with herceptin because they have buggered up my appts over easter (I feel a letter of complaint coming on), I've also just in the last few days had a node removed to check for the metal fils too.

Jane, yup you are right, my onc is researching into the use of ritalin for women with secs who are experiencing severe fatigure in America. I also know someone with multiple myloema(sp?)Jane who has come off amitrytylene(spspsp?)as it is causing him exhaustion too.

I wonder if some of mine isn't related to the changes I made during chemo, i.e. installing a tele in the bedroom. I find it is ideal late at night particularly watching some old crime crap, as oppossed to thinking about depressing things. Clearly it isn't helping my internal time clock. It still doesn't make any sense that I can walk the dog whilst falling asleep. On the other hand even if i don't,(feel exhausted) I really do not want to spend too long in the company of even very good friends - I need more time out these days.

I still have more tools in my chemo box, but again i wonder if it depends on the mental fils result, or one just down the road.

I am certainly not ready to see this as my last spring or summer, still in the grip of some disbelief, which I am grateful for and on occasion I wish I had more of.

By September I will have an empty nest, and I am aware, that my thinking on this is very worrying. I am thinking i can be properly ill, without having to spray on a face for my children, and stay in bed for as long as I need to without having to get up because it worries them if I don't. I'm really going to have to sort out my head before then. Or I shall be like the g/parents in wily wonka

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Re: Not on chemo

Well today I could not have my pamidronate and avastin as I have a nasty infection. Did tell Dr D I thought I had one, sent home with strong antibiotics and blood pressure tablets. I told you I was ill!
Love Debsxxx

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Re: Not on chemo

Hi Kate,
I can't begin to tell you how wonderful it is to see you post again!
Sorry to hear 'mental fil' is giving so much gip, but I can relate to it, it sounds like me and my 'fil' I was at clinic yesterday and was told to take things easy and not expect too much too soon. If you thik about it chemo takes you to the brink of death and when we get an infection it nearly finishes us off. I truly believe if we can see a little improvement each day we stand a good chance of getting through summer. Lets hope with this thread we can all monitor our little steps of improvement.
Take care.
Love Debsxxx

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Re: Not on chemo

Hi
Thanks for starting this post - I was wondering where I could post now and you've yet again found a brilliant thread title.
I feel very odd now that I've been told I can't have any more chemo. I'm used to making my own decisions and feel I have been pushed into it but at the same time, I remember vineralbine giving me terrible diarrhoea and I just wouldn't cope with it.
I've got so far now and if a bad cold, which is what para flu is, nearly kills me then it doesn't seem worth it when chemo will drop my neutrophils etc further. I don't want to die from an infection after pushing so hard for more chemo.
Sometimes, I'm hoping to get strong enough to go home and at other times it seems to much effort to do anything and I just want to throw the towel in and give in and die.
It is my stomach and bowels which are giving me the worst grief and it's difficult to get sufficient pain control without being asleep all the time. I seem to be sensitive to so many drugs now and yesterday was a waste as I had double vision due to some anti sickness drug and just couldn't do anything. Been better today and been at home which was great.
I'm in a wait and see position regarding my belly as my clotting factors are all up the shoot and there is only a small amount of fluid there and the rest is inflammation in my 'mental fils'. It is more risky to try to get fluid out than leave it in.
It's odd having no chemo but I think it is the right decision for me right now and just see what happens.
Debs - glad your blinking eye has healed.
Love to you all
Kate

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Re: Not on chemo

I really believed last spring would be my last!
So I am embracing this one and all it's beauty. Just spent an hour in the garden I have done some chopping but had to stop, poor Ian has been told he will have to clear up my mess! I feel like I have just done a 12 hour shift in one of my old pubs.

Love Debsxxx

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Re: Not on chemo

Hi Marmite

I know that scared feeling of being abandoned. As you know I stopped chemo about three weeks ago and last week felt really panicky about being now just undewr care of GP and hospice nurse. Though I had thought about it a lot, I wasn't prepared for the shock and feeling of being abandoned. Being on treatment is such a security blanket (even when, as in my case, it wasn't working).

I've said before and it may sound hollow but I believe it passionately: I think people with cancer have to seek many different ways of having hope. I think on breast cancer forums hope is often equated only with the search for the next treatment, but I am trying to find hope in other ways...hoping for slow progression, hoping for symptom control, hoping for a period of reasonably well time. I know I'm going to die but I knew that on treatment too.

As you know I'm triple negative too and our options are much more limited (Oh how it annoys me when I read other posters proclaiming there are lots of treatment options...grrh...)and sped through all the standard chemotherapy options. My case is relatively unusual in that I have widespread regional recurrence and some dodgy nodes elsewhere, a query about inflammation in my lungs, but no real major organ spread yet. The only treatment option left for me was to try something called pegylated doxirubycin or seek a Marsden Phase 1 trail...which I decided wasn't for me.

Like you I wonder if this is my last spring...if it is thank goodness its such beautiful one this far. My GP and hopsice nurse are both great and I've talked to them about feeling abandoned...and been reassured its a 'normal' feeling...but scary nonetheless.

Take care

Jane

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Re: Not on chemo

Hi marmite,
I decided to open a new thread because a) I thought there were a few of us now not on chemo b) the forum was getting too quiet(for my liking)
c) there are only so many gormless purchases a girl can make!

You are so welcome to post along with us as are the others. I think we all find ourselves alone with this disease I certainly felt that way. Having just moved to Cornwall and then being told it was back and this is what I would die of! I was a voyuer for a couple of years before becoming a poster.

With luck we can all pull together with our varying levels of knowledge, plus with our oncs all over the country keep a check on what appears to be the 'normal' way of dealing with things once we have used up our chemo options. As you know Jane is triple neg so you will be able to compare treatment or lack of.

Well it is another lovely day day in Carbis Bay, my friend Elaine left for Manchester yesterday so Ian and I went to bed at a more respectable time with only one glass of wine in us. I am feeling less woozzzzy than the past couple of mornings.

Love Debsxxx

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Re: Not on chemo

I know it is not really apropriate that I post here,as I still am on chemo, but it is starting to fail (vonorelbine) and I think I only have one more combo left. Reading yout posts made me realise that I will be very scared when the chemo ends, and all the support that goes with it, as being triple neg I am on no other drugs. I will fell just left to die, with presumably just the support of my hospice nurse and G P.
I am really enjoying the spring weather and wonder whether it will be my last summer,is that being negative? I think I had better stop as I am begining to depress myself! I am 60 so must be one of the older ones.
Marmite x

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Re: Not on chemo

I had a clinic appointment today my onc was off as it is his birthday!
So I saw Dr D she is the palliative care doc so I will leave you to guess what the D stands for. Anyhow she was really nice although clinic was really busy and they were running 1 hour late. She said it will take about six weeks before I will feel the benefit of not having chemo pumped in me every week. We chatted about nerve pain and told me not to panic about the odd stabbing pain here and there as it is most likely due to nerve damage.
I am staying on avastin every other week and pamidronate every 3rd week.
I think it may help us all if we keep a bit of a diary re energy levels.
I have wobbly legs and get breathless so I am hoping that will improve.
Poor Ian has been doing the ironing for the last couple of weeks. Mind you he is responsible for the bl..dy egyptian cotton bedding that takes an age to iron!
Love Debsxxx

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Re: Not on chemo

Thanks Nicky - thats a helpful summary, it does sort of help dividing up the issues into separate categories, I have dealt with some aspects but not others. Trying to get more practical help with my son, but failing pretty miserably, but have rescheduled job and basically manage to get enough sleep...

I think there should be some sort of post chemo rehab course we could go on, I want to enjoy the time I have leftand also build up strength for next one as I am not ready to stop treatment, have to make up an exercise programee that does not involve going for a walk and then stopping for chocolate muffin, cake or brownie. Difficult,

Cathyx

nicky08
Community Champion

Re: Not on chemo

Hi Cathy
I've found my info from last year and it was compiled by Antonia Dean, one of the Clinical Nurse Specialists on this site so you could ask the helpline for more details. There isn't a leaflet as such but it was a number of slide presentations stating how it can affect you and how you can help yourself or get help. Nothing mind blowing other than common sense about looking after yourself, maybe having a blood test (that's if you've not had one recently) to see if you are anaemic, possibly try counselling as you do get a build up of emotions/stress etc which can get you down. Basically the categories to check are Pain - make sure it's being dealt with, Psychological factors, Stress, Exercise (if you are able), Sleep - get enough, Nutrition, getting help around the house (even if it's family/friends rather than a cleaner) and changing work patterns if you work and are able to make changes. Also maybe keep a fatigue journal so you can discuss things with your GP and be able to show how you're feeling. There, that's my infochat done! Hope you are not too tired to read it 😉
Take care
Nicky x

nicky08
Community Champion

Re: Not on chemo

Hi Cathy
I'll search out my info from September and see what was said about cancer fatigue.
Nicky x
(edited because I put 'chemo' not 'cancer')

AnneS
Member

Re: Not on chemo

Just found this thread! Good one Debs - a great idea. I've been off taxol and Avastin since last November and got the double good news in Feb that the finances in my divorce were finally settled in my favour and that I'm now the proud sole owner of my home and the even better news that my mets are currently stable and not active. Had expected myself to be euphoric and relaxed after 9 months of sheer awfulness and anxiety with my divorce and being on chemo. However, as others have said it takes so long to regain energy and it felt very strange after all the fighting both of the illness and for my security for it all to have stopped. I had a much better week last week after thinking I was starting to lose it as when my energy levels are low I get very tearful and had lost a bit of confidence in general.It's great to hear that others have this low energy and I suppose I need to be more patient with myself. It's so hard to get the right balance as I know my time off chemo could be limited and I want to make the most of it but when you feel like you're 90 and yet under 40 and suddenly single with most of my close friends miles away it's not easy!
I definitely feel my energy's improving slowly but surely after 4 months off chemo but I'm very slow and stiff in the mornings due to Arimidex and often not with it for a while due to my anti-depressants.I'm trying to be kinder to myself and just going with it if I feel tired and low. This morning I knew I felt really tired on waking up so I made a cup of tea and went back to bed for an hour and I did feel a lot better for it. I went to a support group last Friday which seemed very friendly and had a good speaker on managing menopausal symptoms. I've been taking stock a lot recently too as my life has completely transformed in the last 12 months but I'm still here! Have just joined a ladies only gym which will give me some motivation - they only do short 30 min circuit programmes and give free joining free for anyone with breast cancer. I told the girl I had breast cancer and she said but you've had the all-clear? Um no!
Anyway take care all x

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Re: Not on chemo

Well, that has made me feel better already.
Love Debsxxx

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Re: Not on chemo

Well, that has made me feel better already.
Love Debsxxx

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Re: Not on chemo

Debs

I pressed submit before I had finished writing...so me not you.

I have about an inch of thin hair now...I was totally bald after taxol but it grew back while on vinorelbine. A bonus!

Jane

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Re: Not on chemo

Jane , when I read your post earlier it only went up to the..... and then it ended. So I think my computer skills are crap! I do think for posters it is an age thing I am 58 and I thought I was 57 somewhere in chemoland I lost a year. I struggle with the computer but living away from friends and family has sort of forced me to learn primitive skills. I am so glad I have because going through all this cancer sh.t without finding out how others are dealing with it, well I think I would have given up!
Cathy, so true it seems to be taking forever to recover from taxol, there is comfort in reading post that others feel the same way. My mind has been thinking, 'well this is it the beginning of the end, always tired unable to walk the dogs, that is my lot now' It really does help knowing other are out there feeling the same.
I am hoping by September we will all have enjoyed a good summer, improvement in energy levels and our uggers kept at bay.
Fingers crossed for us all.
Love Debsxxx
Sorry Jayne you must have been posting at the same time. Welcome and I hope we get some comfort and support from this thread.

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Re: Not on chemo

Hi all - i'm not on chemo now - finished taxol x 18 last month....feeling tired and lots of aches and pains - knee and elbows????? stangely enough - have had wierd swelling to left and now right arm ( intermittant with some joint pain) but haven't talked to anyone about this yet ...but yes - a good thread to chew over physical and emotional responses to the lack of chemo .... and what will happen next............so wishing you all well and hair growing time .......jaynex

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Re: Not on chemo

Cathy: Yes I think age has something to do with it. I was 60 a few weeks ago and I know there are relatively few regular posters in their 60s.

I'd love some answers on fatigue which went beyond taking lots of rests and planning the day. I think it was celeste who posted recently about ritalin being trialled in the US for fatigue.

I think I am only now adusting to the idea that I'm going to be ill/tired for the rest of my life. I get upset just acknowledging that.

Jane

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Re: Not on chemo

i think this thread was a very good idea Debs...very good timing.

At the moment I am having a break as well. I think taxol is a comlete b**stard chemo and really takes it out of you. SOme days I wake up and I feel fine and then the next I feel really tired and muggy, I do take a half a zoplicone most nights and I wonder if this is something to do with it. Trying to pack alot into this break, but that brings its own frustrations as I then get very tired and a bit upset from time to time. Relatives are threatening right now to descend on me as I must be feeling well enough to cope (according to them !),

Jane - you could be right about that, its an interesting theory, it could just be that we are at the younger end of the curve, more IT literate as well.

Debs - I dont have to tell you but side effects of taxol just don't go away do they ? I would say after 6 weeks my energy levels have got better, and I took my son for a walk at the weekend, I suddenly realised I couldnt think of the last time that I had done that.

Nicky did they give you any really useful info on fatigue?

take care all

Cathyx

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Re: Not on chemo

Hi Nicky and Jane,

I have spread to the omentum not sure if the spelling is right so me being me I called it 'mental fil' the 'fil' is for infiltration. It has given me lots of problems can't eat feel full all the time swelling so as I hate it I thought I would think of a name.

Hope you are feeling o.k. Jane I know what you mean re no chemo feels like the safety net has been pulled from under you.

Well lets hope others join us, and this could be one of those helpful threads.

Love Debsxxx

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Re: Not on chemo

Hi Debs

Really good to see this thread.

After initial euphoria about not being on chemo I felt abandoned....my hospice nurse tells me this is 'normal.' It has been good not having the dreadful chemo fatigue but I have still been getting very tired...some days much worse than others. I am really muggy and sleepy in the morning...I wonder whether this is the impact of amytryptiline? My fitness levels are appalling. I get completely breathless walking up stairs or hills.

The pain I get from the tumours in my neck is a bit worse..and also from the nerve pain in my back..but controlled by morphine and oramorph (which bring their own constipation problems...)

I feel in a very scary place as I don't know how and where and when my cancer will spread from here. (but then none of us do) Having visible and touchable tumours is scary in a very particular way.

My GP (very good) working with hospice nurse is now responsible for my 'care'...and I'll only be going back to oncologist if I want scans or when I get symptoms which might need an onoclogist's input. Someone wrote on my recent thread that treatment brings its own dependence and I'm beginning to understand what that really means now I'm not on any treatment...its just me and my cancer.

Also I have slightly guilty feelings (where do they come from?) that I'm not 'fighting' hard enough...that I'm not chasing round the country after drug trials. My hospice nurse tells me that large numbers of people with cancer stop treatment after the amount I've had...but where are they? I am developing a theory that maybe people who frequent breast cancer forums are more likely to pursue treatment longer?

Jane

nicky08
Community Champion

Re: Not on chemo

Hi Debs, and everyone else in the same boat
I finished chemo in Sept 08 (6 x FEC) and this was the 1st chemo I'd had and the 1st treatment for secondaries. I'm very new to all this compared to some, including yourself, on here. I lost all (pretty much) of my hair and recall the Bobby Charlton look without affection. In fact by the end of it all I looked like the Little Britain character, Bubbles De Vere, when she doesn't have her wig on 😉 Luckily my 'fat suit' isn't as big though!
I have been on Pam since last May when I had my 1st chemo and am now on Arimidex as well. I do get achey at times, especially at night in bed which is odd. However scan results today show there's no progression and in fact the mets are 'healing'. I do get tired when I do too much and have to accept that this is part of me now. Having said that I feel pretty good atm but felt rough after my last chemo for several months. I expect to stay on Pam and A I's until things change (for the worse) and do expect to have chemo again.
I went to a BCC secondary BC event in Portsmouth last year and we did have a session on Cancer Fatigue which is a known or recognised side effect of secondary BC - so it's not surprising if we do feel tired given the treatments we have and tablets etc that give unwelcome side effects.
Hope you feel stronger soon, it's early days yet.
Nicky x
ps what is your 'mental fil'? I've seen you mention it before but don't know the term.

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Not on chemo

Hi everyone,
I am starting a new thread as there are a few of us now with secondaries but not on chemo. So I thought we could catch up with how we are feeling.

I am coming up to three weeks without taxol. My 'blinking eye' has healed so I am really pleased as this shows although I am on avastin/pamidronate still my body is healing albeit very slowly! I have an ugly angry red eye shaped scare on the right side of my cleavage and a tiny little hyphen type scare to the left side. I have always had very attractive cleavage so this is a bit upsetting. Not that anyone gets past my bald head and pink pig eyes as they are bereft of eyelashes and brows.

I am at clinic tomorrow and then on Thursday I have pam/avastin, well I hope I do!
My energy levels are really poor and my 'mental fil' is not good. It is almost impossible to get any info on this. Not many people survive long with this one, I am hoping taxol has given it a good shake up.

Well that is where I am up to without chemo anyone else want to tell us how they are getting on?

Oh I meant to say I have a 1970's comb over I have about 50 strands of hair 3inches long scattered around my head, not brave enough to put a picture on here, so all in all I have felt and looked alot better.

Love Debsxxx