its been a long time since i was on this forum , i have now had 4 months of epi and started cmf 2 weeks ago , the problem is that iv been very very sick with both regimes of chemo iv also been neutrapenic twice , i am finding it very hard to cope with the chemo and have come very close to saying i dont want it anymore but i have 3 kids that i have to keep going for i feel my marriage is breaking down and i find it hard to talk to people about my feelings anyone out there who feels the same xxx
Hi
this is my first time on the forum and I am not sure what to say but I think I know what your mean. My situation is that I have just completed my third epi and already want to give up. I had a high grade tumour which was removed in June, no sign of spread. But adjuvant chemo was advised.
The sickness and fatigue has been unbearable. When I started it was implied that I needed it to guard against secondaries, although there was absolutely no sign that I would have any. Last week I was told I was Hercept+ and therefore that is why I had rapid tumour growth without spread to lymph nodes. Because of that it turns out that my survival chances with or without chemo are quite high and imrove by no more than 4 or 5% with the chemo. But the Hercep+ means recurrance is more likely. So my oncologisit says I can stop the epi and try the next chemo stage of cmf, and if I don’t like that go straight to Herceptin! Feeling a definite lack of guidance. On the other hand, I am told the cmf will be easier but then I was told that i’d only have a few bad days on epi. Well, I have a week of nausea, then a week of general illness and fatigue, then, if I’m lucky, one week ok. Frpm what you say, I think if I suffered with one I will suffer with the other.
Problem is though, like you, a have a child although it is just the two of us. And the struggle between what I think I ought to do to ensure the longest life possible and what I want to do to have a good quality of life now is horrendous. I simply cannot bear the idea of carrying on with chemo, it’s like my life is on hold, and I haven’t gone through as much of it as you, but I can’t be sure how much difference that few percentage makes. My son is 15 and I find myself trying to work out the percentages of how long I need to live to see him ok! It seems unreal at times but it’s the only way I can make sense of anything.
I’m afraid I have no answers but if you want to talk about it I’m here.
xx
Hi there
I had 6 treatments of epirubicin and it is horrible horrible stuff but it does end. Im sure it makes you feel depressed. I cried loads a few days after I had it and didnt want any more and said so. Spent ages in bed as I couldnt be bothered to get out of bed I felt so rubbish. But that was back in August and its all forward now.
You both are more than half way through and next week when you feel better it is easier to make decision then when you feel crap.
My sickness was helped with different drugs than the ones they give out at the hospital. Go and see youre GP for something better.
I was also neutrapanic 4 times and it sorts itself out in the end.
It does end.
Lyn xx
Hi Jaydeek
I can sympathise with you as I was told CMF would be a breeze compared to epi. I don’t have any answsers either but my recent experiences might provide some help. I suffered with the first two epi but once my anti sickness meds were sorted - I was given apprepitant - the last two were easier to cope with. Following my first cycle of CMF, which was less harsh in terms of the usual side effects, I had a melt down as I felt I could not cope with more chemo as although the side effects were not as bad they lasted the whole two weeks which I found very difficult. I spoke to my oncologist about giving up (well, I cracked up and sobbed all over the poor man). He saw me on the day I called and was incredibly supportive and said I could give up and move on to radiotherapy or that he could increase the gap between the two doses to see if that helped. The day after I was admitted to hospital with neutrapenic sepsis and chest infecton where I stayed for 7 days which I think was the actual cause of the melt down. However, once I was treated for my infection I felt I could go on as I had some control over the treatment and also knew that I would worry about the possible consequences of giving up. I have been told the chemo would add a 5% increase to my outlook. For my second cycle they reduced the dose by a 5th because of my infection and this has really made a difference. The side effects have been greatly reduced (almost non existent) and I am finding it much easier to cope and can finally see a light at the end of the tunnel. I had 1st dose of the 3rd cycle on Tues and they have continued to keep my on the reduced dose and so far so good.
I am not sure if you have spoken to your oncologist or how approachable they are or if they have already made changes to your treatment but mine changed my anti sickness meds until they found one that worked while I was on epi and they’ve kept me on the same meds for cmf as they did work. I also found that being given a few different options regarding the chemo has really given me the strength to go on and see it through so maybe a chat with them will give you the strength to carry on also if that is what you really want. There are changes they can make that can make a real difference. I’m sure you’ll also recieve some further support from other forum members which might help with your dilemma.
I wish you the best of luck and hope you find the help you need at this very difficult time.
Karen x
Hi,
I am on 4 x epi/4 x cmf and had the second half of dose 6, (so the second CMF double) this week. I can totally understand anyone getting cheesed off on this one as it is so long compared to others and the doubles are sent to challenge anyone. I have had many physical and mental crisis on this and thought hard about giving up. When i struggle I remember the posts of some of the poor people who experience such pain on tax and I just know that is where I am heading if this one does not work. There are other options but how many if we give up in the middle of this one, so I am trying really hard to see this one right through.
I was very poorly after epi 4 and not much better on epi 3 but struggled through the max dose. My reward was the onc saying, that epi alone had done it and now CMF is building you up even higher each time. So now I am some weeks beyond the horrid time, it is easier for me to say i am really glad I did it. I was told he has a 90% success record and thinks this treatment is good, so if you can hang on do so and I promise you will be glad. Obviously some people’s health make this a very different decision and my neuts keep going up on CMF despite the close doses, so I am in a different position from some of you. I find that CMf is milder but lingers and does affect my mond, making me want to give up. Remember alcohol close to the M doubles its toxicity as does some painkiller tablets. Ask for more drugs if you need them. By the way I have early Bc, grade 2 with no spread so it is all preventative, all 7 months of chemo and rads!! I started this early May and go through to end of Nov if I can cheer anyone along with me but I do rollercoaster myself so not always chirpy. It has been hard watching people start after me and be finished before me.
Look at the faces of those children every time you doubt this and always make a decision when you feel well. We stand at this point with primaries once, keeps me chugging along and the support of lovely friends on this site
Love to you all
Lily x
thankyou so much for all your advice because sometimes it feels like im all alone , i started chemo in april and it will be christmas when the chemo finishes then i have 25 sessions of radiotherapy i was dx with grade 3 most aggresive cancer so i was told it was not an option to stop the treatment , it is good to talk to someone who is going through the same as i am , i was reffered to the douglas mcmillan hospice the nurse has come to see me and she is trying to help to control the sickness they are trying me with ondansetron and metoclopramide the next step is a syringe driver which i had in hospital but that is the last resort , i have to keep saying to myself iv got to do this for my children , i have also had to have another scan because i have found another lump i my other breast so i feel its 2 steps forward and 20 back i would just like to say thankyou to everyone who replied to me xxx
Jaydeek,
so so sorry you have another lump to contend with and hope this new one is not a problem too. You just don’t need anything else do you? Depending on what they find, they may change your treatment from that, so then you may change side effects. I will be hoping for some better news for you.
I think if they get the sickness under control you will find it much easier to cope. Just keep hanging in there, in the fable the tortoise took a long time to get to the finish but he still won.
Love
Lily x
Jaydeek,
How are things for you now?
I have had 5 FEC, 1 to go, and am desperate not to be so sick again. I have levomepromazine, Ondansetron, dexamethasone and metoclopramide.
What was the syringe driver like? Did you have it again and did it help?
Irina x
Hi Irina
I had BAD sickness whilst on chemo. After 4 cycles I spoke to my oncologist who changed my steroids and although I still felt nauseous I stopped vomiting. This really made a big difference to me as I had 8 cycles.xxx
Granisteron is a very good anti-sickness…heavy going stuff. Ask your oncologist about it - you can combine it with Dom Periodone.
It worked for me…
I had “Emmend”. I was concerned as all I had to take was one tablet just before chemo and then one tablet for the next two days. I thought I would collapse whilst having chemo if the tablet didn’t work but amazingly it did work!
Good luck! x
hi everyone
i too found emmnend very good. would recommend it.
healing blessings to you all x