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.
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.
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?
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.
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?
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.
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
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.
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
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
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,
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
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
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.
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.
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.
Luckily my ‘fat suit’ isn’t as big though!