Hi everyone hope you are all well. I have had two lots of fec now and have had enough. Has anyone thought about stopping the chemo or has anyone actually stopped. I feel I have had enough of being messed about with. I was told the cancer was gone and this is just preventative.
Does anyone know any statistics of the cancer coming back if you have chemo and if you don’t. I haven’t been told. Its a bit of a cattle market where I have my treatment they are so busy there noone seems to have time to talk to you.
I would be grateful if anyone could help as I am not sure what to do.
Paula xx
I am so sorry you are feeling like this…yes I did think that i should stop but then even if there is just a 1% risk of there being cancer in my body I am prepared to see these 6 FEC out. I want to be there to see my children have children and beyond. This is the best insurance policy I know about and even if things are tough and I feel like I have hit rock bottom at times I really truly think that I would be wrong to stop treatment.
Isn’t there any where else that you can get treatment?
I am not being much help am I, sorry.
I really hope that others can help better than me.
xxx
I stopped after 4 FEC…not a decision that was taken lightly…it was discussed with 2 onc’c, BCN and GP…quite fortunate in that onc’ was very helpful…once decision to stop was made i was told i had been borderline chemo.
I would try and discuss this with onc, BCN etc, what grade, stage were you were there any nodes involved or vascular invasion are you pre-menopausal?
karen
Only you can decide what is right for you but you need to have informed choice, therefor, you must talk this through with your onc before taking such a direction.
In support for how you feel, some people sail through chemo, others, me included have a rough time. There is quite a lot your team can do to help with side effects. Make notes of your porbs and symptoms and discuss them with someone before your next treatment, even if it is on the day. I say this because your pre chemo anti sickness drugs can be tweeked and this went some way to helping me.
It is not unusual to have these feelings. By my last chemo I found myself saying that if I had to have it again, I would think twice. Now, only 3 mths later, I think I would have anything they threw at me to be here for my family and see them grow up.
We are all different, with different grades of BC with dif tolerances to chemo etc etc. It’s your choice. I hope you can make the right decision with support.
Irene
Hi Paula
I nearly gave up after 3 of 8 but managed to persevere as I intended refusing radiotherapy (which I did) as they were undecided whether or not I would benefit and as they"erred on the side of caution, were giving it me". I think you need to discuss with onc or bc nurse how beneficial chemo is in your case.
Don’t blame you though. L:ike Irene I am 3 months on but I am definitely not having chemo again - whatever.
Good luck in making your decision
Marilyn x
Hi Paula, please try and perservere, You have had two so might as well carry on. Believe me there were times when I was going through chemo when I couldn’t evern muster up the energy to use the remote control even if I could have had the energy to concentrate on the tv. I had every symptom going as did a few of my fellow sufferers. It is to me a bit like childbirth. I remember it being painful at the time but I still did it again and again in fact 7 times. I have not forgotten feeling ill but it is all behind me and I never think of it now. three months on. I do thiok about bc all the time but I wouldn’t hesitate to have more chemo if I needed it. I am now getting a bit of hair and my nails are beginning to grow(lost some whilst on taxotere) I think the time went very quickly on chemo. You can do it we will all listen and support you. Love Eileen
Hi Paula,
yes, I did seriously think after 2 FEC that I could not possibly continue. I also have Crohn’s and had to stop my normal weekly chemo (methotrexate) and I could not eat even home made vegetable soup with the solids strained out, without severe diarrhea. Couldn’t even make the 6 steps from my bed to the lavatory at times and was embarrasingly faecally incontinent in the street twice, so I stopped going out, except for visits to the hospital. My Oncologist got me some hospital prescribed Frutijuice (9 flavours, all yucky) and I spent some 4 months on this awful stuff, 3 cartons a day. However, the thought of having microscopic cancer cells in my body that the surgeries had not gotten rid of, made me persevere. It is a personal choice, and everyone has the right to make their own decisions. Looking back, some 4 years now, I do remember how very difficult it was for me, and indeed my husband, who had to make and eat his own meals alone at the dining table, but I know that I made the right decision in the context of my prognosis. I think the Onc said I had a 4% better chance of no recurrence with chemo, and an additional 5% with radiotherapy. I had both and don’t regret my decision for one moment. Indeed, I would go through it all again if the cancer recurs. I just want to live, and 4 months of chemo is not long a time in the context of living a longer life.
Do talk to your Oncologist about your own prognosis and what benefits chemo will give you, then make your decision.
Take care,
love, Liz.
P.S. Just looked at your post again re stats on recurrence with or without chemo. I don’t know the answer, but JaneRA , ChristineMH or Mole probably do and hopefully will respond. I think of them as the “PH.d’s of bc” on this site as they are so knowledgeable. Only this past week I have heard from an old friend whose sister had an unusual form of bc (yellow fluid leaking through the nipple) 12 years ago - she had a mastectomy and radiotherapy and no chemotherapy. Her cancer, same form, (she won’t discuss her bc so I don’t know exactly what she had) has returned in the other breast. This past Tuesday I went to get my hair cut and my hairdresser (who was dx 5 yrs ago) said her cancer has returned in the same breast (she originally had a 6 cm tumour with neo-adjuvant chemo before lumpectomy and radiotherapy) and she is having a mastectomy later this month. So - don’t know what this means in terms of stats. One had chemo, other didn’t, but they did have very different, and unusual forms of bc. To complete the old cliche of “things happen in threes”, a dear male friend in Florida has also this past week, had cancer return in his remaining lung, after 7 years of being told he was stage IV terminal. He had a lung and a kidney removed, 3 lots of chemo, yet is still here at 78 yrs. old, so there is always, hope.
Love, Liz.
Dont know if this will help but I had three cycles of FEC
First two i was really rough but the third one I sailed through -no sickness or any other side effects
So for me It did get better and possible will for you
Jools
Hi Paula, i know exactly how you feel beleieve me! i was so bad on FEC, i had the second one and said rights thats it i cant take any more. I went to the clinic on the day that should have been for my third and told my onc that i wasnt having anymore. My cancer was 2cm, grade 2 stage 2 and just one lymph node infected (and that was capsulated) , i am in France so they have different guidelines etc . Anyway, he told me i had to go on, as i just sat there weak and crying in his chair, next thing was he got me by the arm and dragged me into a little private room with a bed and shouted the nurse into me, i didnt have the strentgh to physicly fight and they got it into me as quick as possible.He kept promising me that i would find the taxatere much more easy to tolerate and that i would be sick on it (they tried everything while on FEC and nothing would stop me puking), i have to say if it wasnt for him i wouldnt have seen it through.
I started my taxatere and although i had various side effects it was NO WHERE near as bad and the last one i didnt even end up in bed.
They told me that FEC is a hard one for people to cope with so dont know how many you are having? is it possible to have TAX for your last 3.
I really do feel for you, i do know how you are feeling but you have to go and have the next one, you will get through this…promise
love shirl X
Thank for your replies. I know I should carry on for my kids but am so fed up with feeling ill and tired. I am having tax for my last three but was under the impression that was worse. I had three tumours, 22mm 19mm and 6mm they were grade 2 and oestrogen pos. 1 lymph node out of 11 affected. The nurse that did my last fec said that was really unusual to have 3 tumours. I didn’t have a mastectomy the surgeon maanaged to remove it all. I’m trying to get a headwear business off the ground but the thought of getting the sewing machine out, I don’t seem to have enough energy.
I will carry on now I have read all your replies, if not just for my family. Just want it to all be over.
Thankyou again guys for your support.
Paula x
Hi Popsi
I think you have made the right decision, there light at the end of the tunnel, and we will be here for you, some of us (with our crazy sleep patterns) often 24hrs a day!
Love Irene
We will do all we can to get you through it, just hang on in there, one day- one treatment session at a time (dont look at the whole picture) you will make it through this nightmare. Nobody says its easy, coz its not and when you feel like giving it up just think ‘i will wait till tomorrow’ then thats another day over with!
The feeling at the end of your last chemo, when the nurse takes that needle out - WOW its the most fantastic feeling in the world.
Hi Paula,
I’ve just caught up with your thread. I am so glad you have decided to carry on with your chemo, I truly believe you have made the right decision. I started my chemo in May, I am on E-CMF. I remember feeling at my worst after Epi No3 and thinking ‘thats it, I’ve had enough of feeling like this, I’m not putting myself though this anymore’. I was at a really low ebb and seriously considered stopping, although I know I never would have done it. Things are slightly different for me though as I had lymph node involvement. Even so, I still would not stop as I am 35 and there are so many things I haven’t done yet and so I am willing to take everything they want to throw at this little blighter!!!
I have no doubt that at times, everyone who goes through chemo will feel like you did yesterday, at some stage or another. I would find it very hard to believe if someone said they had never had those feelings of despair and wanting to stop the treatment. Even for the people who’s side effects are minimal compared to others it is still tough.
It may sound dramatic but I would not wish chemo on my worst enemy. Although today I feel ‘well’, I know it will be a different case when I go for my next CMF cycle next weds. Unless they have been through chemo it is almost impossible to describe to someone just how bad chemo can make you feel, both physically and mentally.
Recently I have been struggling with the ‘mental’ side of the treatment and its side-effects, so I booked myself some counselling through my local support centre and I had my first ‘session’ last week. I found this to be extremely beneficial, perhaps its something that may be helpful to you?
The rest of your chemo will go quicker than you know, and, as Irene says, there most definately is light at the end of the tunnel, for all of us,
Take care,
Kelly
-x-
Hi Paula,
Like you I had three separate tumours, all small, (3mm, 3.5mm and 6mm), the only sign I had anything at all wrong was when I discovered a little lump under my arm, which turned out to be an enlarged lymph node infected with secondary bc cells. All my cancers were different, one being DCIS, one being hormone positive, and one being HER2 positive. I had a mastectomy and axillary clearance, only that one lymph node which I first discovered was affected out of 17 removed.
My treatment is much the same as your own, except I am having 4 x FEC (I have had 3 now) followed by 4 x Taxotere. Then Radiotherapy and 12 months of Herceptin plus 5 years of Arimidex. The third FEC has been the worst so far, and has taken me longer to get over…terrible heartburn/indigestion and complete exhaustion. I too, have said that I was not going to put my body through it all again, but the next one is due in a week’s time, and I expect I shall be keeping my appointment even though I feel like chucking it all in!
I asked my Oncologist what percentage increase all this would add to my chances of non-recurrence/spread and he wouldn’t discuss it…saying only that he dealt in statistics not percentages, and statistics showed that the treatment he proposed for me was my very best chance of surviving to celebrate my 100th birthday!
The other ladies on here who have finished their own chemo regime, have surely given you and I the courage to go on? They have fought their way through it and come out the other side knowing that they have given it their best shot.
Hopefully we can do it too and will celebrate many many more birthdays with our families and friends.
Hugs
Dee
x