Hi everybody, I was wondering if somebody out there could help me? I was diagnosed in August this year and had a SSM and full ANC in September. I’m a healthy 40 year old with no family history of BC. I had my first chemo last Monday, EPI for x 4 and then CMF and have done nothing but be in bed since. I’ve had pains in my joints, unconytollable nausea despite anti sick drugs, diarohhea and have lost nearly a stone in weight. Given that I was only just under eight stone pre chemo, its weight that I can’ afford to lose.
I only went ahead with the chemo as i felt that I would be ostracised by my family if I didn’t go ahead with it. I am more than happy to ditch the chemo and just go for the radio and hormone therapy, I don’t want my life to be anything like it has this last week for the next six months. Can anybody share with me if they had been in a simlar situation and not had the chemo and if so, what was the response from yout breast care team? Please help
What a horrible time you have had. Have you talked to someone at the hospital? The sickness sounds awful and you should at least be able to get alternative anti sick medication.
Many people don’t have the awful side effects you are getting and you really do need to talk through what is happening so you can make a sane decision about whether to continue chemotherapy.
best wishes
Jane
Hi I am getting the same chemo as you i go for my 3rd next Friday. Like you i was sick and had the shakes really badly i also got the worst period ever i told Dr they changed my tablet 2nd epi i still was abit sick but the shaking stoped and i felt i whole lot better talk to someone they have anti everything theres no need to suffer.
You will also get lots of support from this site.
When do you get your next epi or you on the trials?
Hope you feel better and if i can do this any one can
Poppet
Hi Poppet and Jane. Thanks for your replies! I’m due to have my second EPI two weeks tomorrow. I was really nervous that I would have bad sickness and the meds that they gave me are supossed to do the job but unfortunately not. I’ve had pains, cramps, blurred vision, sleeplessness and nausea and diarohhea and can seriously do without it. I know the chemo is there to help prevent a secondary but if this is what its going to be like then I’m not prepared to go through with it. Poppet… you sound like you’ve been through the mill as well??? Has your appetite been affected? x
Hi the first time it was i could only eat porridge and toast and plain crisps.
But they can get the right tablets mine was a side effect of the sickness tablets they did not agree with me the blured vison was steriods and settled down have you asked about pain killers for joint pains and also make sure you drink plenty even if you are sick. some time when we get nervous it reacts with the chemo to it is so frighten when we have that first chemo but think very careful about stoping chemo because you can not reverse your decision and might regreated acouple of year down the line its a desicion only youcan make but i would try another one and get onc to change tablets we are all here for each other and help each other through this period in our lives.
Hugs Poppet
Thanks for your support. The side effects are just plain pants aren’t they? I’ve been reading some of the other discussions that have been posted and we all seem to be suffering them in one form or another. I’m going to see my consultant later in the week to discuss treatment options etc. By the way, have you had a CT scan?
Hi Sausage
I can see that you have received support and valuable advice here from your fellow users. I am sorry to read that you are going through such a trying time with your treatments, please call our helpline for further information and support, it is open mon-Fri 9-5 and Sat 9-2, the staff here are either specialist breast care nurses or have had breast cancer themselves.
Best wishes
Lucy
Hi
No i have not had any scans i had grade 2 inva duct tumor with 3/17 node infected thats what made my decision to have the chemo was the node involvment and ben only 45 i thought i wanted the best chance of stoping secondary bc. I hope all goes well for you
Poppet
Hi Sausage
I had Epi 2 years ago and I was really sick on the first one, the next 3 were fine. Talk to your team and as Poppet said think very carefully about stopping chemo as you cant go back.
Best wishes
Sue
Hi there, God it sounds like you have had a terrible time… so sorry to hear that. I am on the same regime as you…and have completed my third epi just over a week ago. I was just wondering how prepared you were for the first one… I didn’t discover this site until id done my first epi but I quickly got up to speed by reading the tips thread… I think it has helped me to know that at best I have to right off a week, get a slow week and then hopefully have a good week. Fortunately that seemed to be the case with my first one and although I didn’t as bad symptoms as you I was very rotten… Like others have suggested, I was quick to get my meds changed because id heard that the first line (often cheaper) anti-sickness meds don’t work for everyone. Second time round my sickness was controlled but i had a truly awful time… but low and behold this one has been fine. Only tiredness to content with. I suppose what im trying to say that this epi is nothing if unpredictable. I wonder whether you might give it another go before making your decision… because things might be managed a bit better for you. I was encouraged to ring the team the minute things were too difficult… I hope this support was offered to you and that you might be able to make use of it.
just sending lots of courage as you mull over this difficult decision. xxx carmel
Hi,
well I have just finished epi/cmf last week and I can honestly say I have totally amazed myself as I wanted to give up so often. Yes I have had all those side effects and quite a few extras on top ( i have had liquid tears and artificial saliva - yuk)but no-one can really appreciate just how you feel either. I have to tell you that epi is one of 2 main drugs that is now included in almost all regimes because they boot cancer up the backside so well,searching round the body for any tiny micro strays that may have wandered off to cause havoc somewhere else. No-one knows who it will come back in but you can improve your chances a lot by having chemo. Secondary cancer is something you want to avoid at almost any cost I would say. We are fortunate that over the past few years they have now decided to give chemo to people with early dx that would not have been given it previously. In my area everyone virtually, under 50 is recommended to have it now, for any cancer dx. We apparently have one of the high survival rates so I just go along with whatever they say. Having watched 3 people with really good dx get it back 3 years later and then be fighting secondaries, it was not such a hard decision for me and also looking at my 4 childrens’ faces. So that is the big argument for having it. Can I remember lying down thinking about asking the vet to put me down? Yes but it seems so much dimmer and less important now and much more important that I got it done.
There are several things you can do right now as going into chemo calm is half of the battle. When I panic, my side effects rocket. Also neurofen or alcohol after chemo can double its toxicity, so avoid those. Drink and eat really well on the days before and that day as much as you can, it helps to line your tummy. I always had a cooked breakfast before | went and had at least 3 drinks while in there. Phone your BCN or the unit and tell them how ill you have been. I phone all through each cycle for advise when I need it and boy did I! They can sort the sickness out, my friend used to take 2 lots each cycle to combat it as she was sick before she even got home each time. The blurring is caused by the steroids and settles if you stay still and don’t try to look too far ahead. I went to a supermarket with it and got vertigo and flashing vision but found sitting about settled it. Immodium for the trots and watch your milk intake for a few days, it took me 6 cycles to realise that when I get the trots I can’t tolerate milk. You sound like me that it does take its toll heavily and I would just recommend that you stop trying to do anything else if at all possible and just go with the flow, like a cork in the ocean but keep a diary so you know exactly which day you will be starting to improve on. I am really sorry that i sound like someone’s Mother here and send you giant hugs to get through this. I hope any of this helps but try to keep the big picture of a cure from primary Bc in your head. We will always be here to support you if you choose to battle on. Why not try the next and decide from then but with lots of help with better meds. If not then then the very best of luck and we all understand that decision too, more than you know.
Cyber hugs
Lily x
I would like to put Lily’s points in perspcetive.
Yes chemotherpay does save some lives at primary diagnosis. It may, depending on original prognosis improve chances of recurrence by 5%,10% or more…as do the use of hormonal treatments.
But we each have to weigh up what our individual percentages mean for us. We each have a different approach to risk. If you have an 80% chance of no recurrence than you may or may not want an extra 5% chance wheraes if you have a 80% chance of recurrence reducing that by 5% may mean more.
Many many perople have chemotherapy for no benefit…the problem is no one knows who they are going to be. Some people are left with awful permamnt side effects from chemotherapy.
We are al ong way from a cure for breast cancer. Yes chemotherpay improves chances at rimary diagnosis but not necessarily or always.
I have by the way had loads of chemotherapy for both primary and recurrent cnacer (which is terminal). I still don’t know whether I have taken the right decision…
Jane
Hi Sausage,
you know that is what is great about this site, you get the benefit of so many different viewpoints. Go with the one that suits you sweet and whatever you decide, stick with it and don’t look back. I would always have a chat with the onc though as he might even agree with you or offer an alternative. Good luck.
Lily x
Excellent comments Jane RA. I was thinking how to word what I wanted to say and then read your comments and you’ve “put it in a nutshell” - so thank you!
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Hi Sausage,
I hope my coments don’t put you off making an informed decision re whether to continue or not. As others have said it’s best to discuss how you feel with your medical team who best know the benefits chemo may bring.
I was on epi - cmf earlier this year and had all the symptoms you describe. My anti sickness meds and steroid use was changed but to be honest it only gave a small improvement. I suppose back then I decided that as I’d started I just had to grit my teeth and get on with it. I’d read that cmf was easier so I was relieved when I started cmf. The first one was much easier than epi so I thought I’d cracked the worst, Not so…I ended up so ill in hospital twice that my onc decided to stop chemo.
Because of the severity of the infection I have been left with twisted muscles and nerve endings around my spine. They are now thinking this may be permanent but only time will tell. In the meantime I have regular nerve blocking injections which help me walk without pain.
I’m starting to think that there isn’t enough said about possible permanent side effects of chemo. I read all the literature but I don;t remember reading about side effects possibly being permanent. I guess it would frighten some women from even starting but had known it would have gven me more information to throw into the equation when I was making my decision. The benefit for me was 5.6% so it was relatively small. I’m not sure how I feel about it all now. i know I gave it my best shot to prevent recurrance but I’m fed up thinking I may have gone through the whole sh*t with little beneft and permanent walkng problems.
Not everybody has as bad reactions as I had. As my onc said ’ you are in the minority’ just bad luck I guess.
Do talk to your team and share your feelings…they have expert knowledge in dealing wth your cancer but you are the expert when it comes to how your own body works.
Good Luck with whatever you decide.
Trish