Hi
I need to bounce this idea off some people before I go in to see my onc, which will probably be at the end of July, no appointment date sent yet.
I am on a trial (TACT2 ) and was randomly given arm one, which is 4 x epi and then 4 x CFM, taking 7 months to complete so much longer than the standard 18 weeks of FEC in my area. I was initially very disappointed as this was the only arm I did not want but have come to appreciate 2 weeks in each cycle with no side effects or work, to get better and actually enjoy! The onc told me at the start that he was quite happy for me to pull out after dose 6 and that he had told a number of other ladies that they could do this too. Financially being on this arm means that I go to half pay before finishing chemo and I have rads after that too. If my doses stay on time and I am fortunate enough to stay well I will remain in half pay until I go back but it will be quite tight and not take much to go over the date.
I know I am luckier than many of you with my pay but should I even consider pay in my decision?
Do you think I should pull out of the last 2 doses? Each of these last 4 CFM doses involves going 2 weeks in a row (8 doses in total) so that would actually be 4 less treatments and 4 less blood tests. Your opinions either way would be really appreciated so I can mull it over before my 10 mins with the big man and having to decide on the spot. (relevant info - I had a 24mm ductal tumour with no nodes involved, lumpectomy but vascular involvement was just starting to appear.) Thank you so much.
Lily x
I honestly dont know what I would do Financialy it would make sense Iam only on basic £75 SSP at the moment but hoping to get DLA. But its not much less than my part time pay. As for the chemo thats a hard one I know it rough on you and I would be so tempted to say stop but can I ask you something maybe a little brutal. If you stopped and it came back you would be cursing the fact that you never finished maybe this will play a big part in your decision I hope Ive helped a little
If it was me, I’d finish the chemo, horrid stuff that it is, and want to do all I could to try to stop my disease here and now. Why does the onc want you to stop anyway? You must have been offered the full course of treatment for a reason.
Hi there Lily,
Your decision, of course - I’d go the distance. A bit of pay deprivation at this stage is better than the slight worry in the back of your mind that you didn’t do everything that was offered. I’m not through my treatment yet, but seems to me that some women who have more or less completed everything are still plagued by the possibility of its return/secondaries etc. - reasonably enough. I think I’d find the knowledge that - ‘I’ve done everything I can - if it hits again, that’s tough’ - good for my peace of mind. It would be out of my hands at least. And, quite frankly, while our oncologists are no doubt all lovely people with the greatest commitment to doing the best possible for all their patients - let’s face it, they lose some, and can’t really afford to get too enmeshed in the decision-making processes of all their punters. If the course of drugs is ‘thus’ and you don’t want it? Time’s up. Next patient.
Be happy with your decision, whatever it is.
M-L xx
HI Lily MY Onc had to stop my Cmf after 2nd course had same as you EPI-CMF.I was so ill that ONC decided it was to much for me ,lost two stone in four months (only good thing about it) also had pancreatiitis and was hospitalised.Onc said Epi was the main man. However to make up for that he has put me down for 25 doses of RADS , I have just had first seven doses. Then 5yrs of Tamoxifen.Anyhow those are the facts from me do’nt know if it will help your decision but whatever you decide keep in touch. I had WLE 18mm nonpalbable tumour, sentinel node biopsy 1/7 lymph node involved (op Nov 07) I personally would have liked to finish mine if I had not ben so ill. I trust my Onc and know that he made the right decision for me. love Bobbie
I agree with ML & Fiz - no doubt in your mind with having done all you can then.
I’m in the same boat with pay, and am currently frantically trying to budget ahead to stay on top. I work within the NHS with patient contact (I’m a midwife) and I could work if I wanted to , but I’d have to make a lot of fuss about it to do so. if you are well for a lot of the time could you come to an arrangement with your employer and work too when you can to ‘conserve’ sick time?
Good luck with the decision making. Remember, life’s short.
Lily, I would rather go through all the treatment now, with the side effects including practical ones than wake up one day and wish that I had finished. Margaret
I too would go the distance, I want to know that if it did come back I had thrown everything at the thing, where as I would always be thinking what if???
I’m only due to have my second FEC on monday but after my first I was ready to throw in the towel. I have now decided it’s something I have to do and am determined to carry on. I have to admit I will be counting down so whatever you decide make sure its what you want.
Babs
Hi
thank you so much to everyone that has added to this thread, I think you have all come to the same opinion really. I have to say ‘no regrets’ is how I talked myself into going through with the chemo at all, so my head does say finish it as long as you are well enough. The rest of me thinks having 8 doses instead of 12 (as the last 4 are doubles) sounds fantastic! I read about a small risk of getting leukemia in 6 years from the treatment and that does spook me too. To answer a couple of questions you raised. I am a secondary school teacher so it would be too complicated to keep passing work on for cover and homework, marking, etc and the kids would suffer, they don’t want the children to know what is wrong either. I am fairly certain I could not cope and there is also the high risk when my immune system is down to consider, as I would be in contact with so many bugs (1200 kids). I think if I was in an office I would try to work but I cannot just leave early if I cannot manage. When asked to consider the trial I said but if I get arm one it is 7 months and I may have a problem financially, the onc said I would be happy for you to pull out after 6, I have told other ladies this. Do you think he will be able to give an idea about what difference the 2 extra ones would make? I have been too scared to ask for stats so far but reading others who have talked about theirs I get the idea mine would probably be quite good, not that there are ever any guarantees.
I am going through this with a friend who has 6 doses and I have to go 12 times, despite hers unfortunately not being the first time with BC. I just think it will be really tough when she finishes and my brilliant support from her stops, we have chemo on the same days. Do you know what I mean? well thank you anyway, if you think of anything else please keep posting, I really appreciate your input. You will have to put up with me moaning for a lot longer if I go to the end!!!
Hugs to you all, hope it is going ok for you right now
Lily x
your friend isn’t going to not be there when your chemo stops - she just won’t be physically in the room with you at admin times.
Can you not come off the trial and go for the straightforward (quicker) route??? It seems that the chemo is often changed in order to cope with problems/symptoms that arise anyway… I’m of the understanding that the first bit of the trial is the same as the standard treatment anyway…
Yes - working in a secondary school wouldn’t happen would it! Remember that holiday periods when sick are taken at the end of the sick time, and with the summer hols coming up, that whould also but you some time…
My kids have a teacher in their school who ‘isn’t going to be around for a while’ and they can’t eek any information out about her problem. My daughter got very distressed yesterday and suddenly cired saying ‘mum, what if Ms M has BC like you?? She won’t even know that we are thinkning of her and that now she’s gone we think she is a relly good teacher’ !!
I suggested that she write her a get well card saying those things… sure Ms M would like that, whatever is wrong!
Hi Lily
I did not have to have chemo, just WLE and SNB, re-excision (margin not clear) and then rads. Now on Tamoxifen.
I like you am a high school teacher, although p/t 60%.
I told the children at school why I was away, not at first, I would have burst in tears at first, just said had an op. non specific. I could have left it there but felt it right to tell them. Having, being treated for breast cancer, well any cancer, affects so many, it is part of life and reality. I think as long as you are ok with them knowing and sensitive with info. then I think it is appropriate to tell. I have a few students whose mum has bc and has had matectomy and just finished chemo and it was ok for them to know about me and talk to me, the eldest did quite often.
I was worried about time off work and finances, also being p/t and that is my only income I would seriously struggle in on half that. Would only pay the mortgage.
I was told by breastcare nurse that if on full pay during sick leave stay off til the end of treatment. This I do not think is the best advice, since it depends on what treatment you are having, how you may be both physically and emotionally, how long the treatment will last and whether you can keep a roof over your head. Yes it was really impractical going back after surgery the first time for three/four weeks and them half term and then a week for reexcision… so going back would have messed up the students. Chemo I did not have to do so for you there is a risk, but I may have considered working through some of it, I know some ladies do, there are probably a few teachers out there who may give you some advice. But maybe that is totally unrealistic. I worked through rads and that was fine, may have been tired but at least I did not spend days at home waiting/dwelling/contemplating my navel… Hospital timetabled me at the end of the day for zapping. Unfortunately I never managed to use my time off work in and creative way, I found it very depressing.
I went back to work during rads for another reason, I thought what if it came back and I had to have more treatment and time off work? Life is unpredictable.
I think that if I was on a course of treatment as long as it was what the onc. felt was the best for me than I would stay the course. I do not doubt it must be pretty frightening.
Sorry for rabbiting on Lily. Look after you, do what you feel is right for you.
Alicex
hi i think its a personal decision. i was due to have 6 fec but it didnt agree with me and i stopped at four. it was a hard decision but my onc said it wil havedone what its meant to do i have given it a good go and she wouldnt loose any sleep over me stopping. so i did i have no regrets and feel healthy has it worked i will never know i have to be positive. good luck.
Lily,
If you are a teacher, the sickness year ends, i think on 31st March. If you could go back to work even just for a day or two, you would be entitled to use sick leave from the current leave year, up to another 100 days on full pay -assuming you’ve been working for over 3 years.
Hi,
thanks again ladies, some great comments to help me bounce this about in my head. I did go back to work after the dx and worked up to the last school day before surgery. As this was before a half term, my first day sick was 14 April making my sick leave is in the 08/09 year. I do get 100 working days but this will stop mid October, my chemo ends mid Nov and then I was told I would have about 3 weeks before rads start. not sure how well you feel after rads to go straight back. Also despite being at a huge hospital, I have to drive to another area for rads with no parking, so not easy to rush in and out. It will be an hour in the car each time if the roads are quiet and it is a notoriously manic main route so often delays. I will hang onto the late appointment plan or just do mornings possibly. What happens if you do half a day on half pay because there is no point if I still get half pay.
I was interested in the idea about coming off the trial but 6 x FEC is our standard treatment, I will def ask about that though. I do like trying to help the next generation though, especially as I have thrown my 3 daughters in the line of fire possibly. Where would I be now if others in the past had not agreed to join the trials, which my better prognosis has resulted from? That is one of my positives to do a little bit of good. Hope Ms M is not with us though and your kiddies don’t miss her too much. I think of my tutor group as my other little family and just didn’t wanrt to worry them. One has had her Mum and another relative with BC, both triple negative and young, and she has really lent on me when she needed to let off steam or results were not good for them. Some I have met their Grandparents or chat to parents each week to try to get them back on track for their GCSEs, so I get really involved with them all. I have 4 pupils who are not allowed to see one parent and get very distressed at times. The list goes on and I love them to bits.
Well you have given me more to think about and I will ask the relevant questions. I might ask my research nurse if she is back on Tuesday when I next go in the nuclear bunker! Hope you are all ok and good luck with your next treatment.
Love
Lily x
Hello Lily
My sister is on the same trial as you and I know she needs to finish the TAC2 course. I am on 6FECs and borderline for chemo - just 2.8% benefit according to adjuvant online. The oncologist said I could end early if I couldn’t take it [76yrs age!]. I have 2 more to go and will stick it out. As a retired nurse teacher/researcher I just feel that any chance of mopping up a micro metasteses should be taken. So my decision like yours comes down to personal choice. We’re borderline! Lucky us. We can factor in other things - not in my case - but in yours - like surviving financially.
But you are on a trial so this is impinging on your decision. As I see it the key question to ask the oncologist is 'what is/would be the optimum course for you [with these drugs] - regardless of the trial? If the answer is that you don’t need the last 2 - except for the trial - then you can give more weight to financial issues.
I just have a hunch though that you’ll see it through to the end.
Whatever you decide Lily I wish you all the luck and love in the world. Thanks for you input with my problems too. And good wishes to all you brave ladies with bc - how I wish I had had a true understanding of all your suffering when I was actively nusing and teaching!
Love feistysisterxxx