Hi
I had my first treatment of the above on Monday and reading on here I dont seem to see this regime mentioned very often. Has anyone had experience of this medication please and if so how did you find it?
Thankyou
Mandy
Hi Mandy my wife had e-cmf in fact she had her last treatment today,on the whole her words it wasn’t to bad the EPI part she found quite doable with tiredness the major problem,she lost her hair after about 20 days shaved it off and looked lovely.Her advice is take all the meds they offer you whether you feel you need them or not.Make sure you tell them of any problems you might be having they have meds for most things.CMF was split into 8 with 4 lots of two injections going for two weeks and then off for two weeks with tablets for fourteen days,she had a couple of infections which the nurses said was a cumalative effect as we dorove home today she said to me well i am glad that is over but to be honest it wasn’t as bad as i thought it would be the very best of luck with your treatment and if you want me to ask her anything please PM me and i will ask her look after yourself
Hi Mandy
I had Epi/CMF last year finished Sept.
I would say for me the Epi was much better than the CMF however lots of people say the other way round. I think we ar eall different and just have to deal with any se’s as and when they come up. With the Epi I had very sore throat after 1st one and really bad indegestion which I had all the way through both Epi and CMF. When you go for your next chemo they will ask you what side effects you had and give you shed loads of medicines to combat them GREAT however I dont think I had the same se twice on Epi lol. With the CMF was supposed to have tablets for 14 days but was really really sick with them so moved on to IV for last 3 was better but still felt sick all the way through and had seriously sore mouth with each round.
As I said tho everyone is different but whatever side effects you get the hospital will give you something to sort it out.
I lost my hair just before 2nd Epi but it started to grow back whilst on CMF
Feel free to pm if you want to ask anything
Good luck!!!
Jill x x
Hi Mandy, like Tollie I had ecmf and finished in Sept, again, like her, I found the cmf worse. I also found that i wasnt so sick on the cmf so cut down on the steroids and the anti sickness meds which helped. My hair came back on cmf too which was a bonus. Its pretty common to have this regime in Shropshire if there is no nodal involvement.
If it helps, i mamaged to work through my chemo and a year on its all a dim and distant memory!!
Good luck!!
Hi to all three of you and thankyou for your responses. Its funny as they tell you in theory that the EPI bits the hardest part but the odd person Ive read about seems to say the opposite and also the lovely long list of side effcts that they give you they cirlced about half of them and say these will mainly affect you on the CMF bit! Great I’ll look forward to that! I have to say (I’ll poss live to regret this!) but I havent been too bad. Vomiting in the evening the day of having it, til I was jabbed that sorted that and then two days later felt very rough. Other than that have been constipated and have had the feeling that something is stuck in my “windpipe” for want of a better description! I suppose that’s a kind of indigestion! Expecting the hair loss in about a week or so, right when Im on holiday with the kiddies!!
Kevin I find it so lovely that you say your wife looked lovely when she shaved her head! Cant imagine I will, Ive tried those turban/ scarves on and I look like a bolied egg crossed with a new baby!
Jill Im waiting for the sore mouth bit and have bought the mouthwash stuff but so far so good! Did it kick in immediately?
I admire you daffodil for working through it. I have to say Im missing work and could imagine feeling up to it at some points (I had a bilateral mastectomy and recovered pretty well!) but Ive decided as I need to be able to give 100% to my job (midwife) and feeling that I need to prioritise my 3 kids (5,13 and 15) Ive decided not to. Im close to Shropshire (Staffordshire) but dont seem to hear of anyone on this regime here. (There probably is!) I didnt have nodes involved as you say.
Just one final question, now youve got me started! ;-). When do you think you start to feel like your normal self emotionally would you say? I have found the physical side of things pretty alright but the emotional side is so hard. I hate every bit of the whole cancer thing and the effects it has had on my life and my families life. Ive always been a natural optimist who loves my life but that seems to have done one and disappeared when I need it most. Im not sure if councelling/ Macmillan support would help me or just annoy me more as its going to be more time spent thinking about cancer rather than enjoying my life like I used to?
Thankyou again for your reponses
mandy
Hi Mandy
In addition to the support here, BCC can offer you further support ideas which may help, you can read about our one to one support and live chat here along with our helpline service where you can call to talk things through with one of our team in confidence :
http://www.breastcancercare.org.uk/breast-cancer-services
Take care
Lucy
Hi Mandy
Glad you are feeling ok! Sore mouth for me was after 2nd epi and than after every CMF lovely. The bit about having something stuck in your throat I had tablets for exactly that and just kept taking them through CMF just in case I think they call it reflux??? Soo annoying though leterozole or something tabs were called. I also worked through chemo had rads alongside 1st 2 cmf so had 3 weeks off for them but only coz at hospital everyday. I found that actually helped emotionally as made me feel more normal! It is difficult I think after the treatment finished because my cancer was triple negative so no further treatment I felt a bit abandoned and down as after being seen at hospital every 3 weeks or more often I was just left to get on with it and that was when I felt a bit emotional. What type is yours?
I have my check up with onc next month so will be a year after treatment finished for me have seen them once before and had breast clinic check ups. I now have lymphoedema as well even though supposedley low risk so am bit unhappy to have developed that so soon after but hey ho!
Hope you continue to be well please ask if anything I can help with?
Jill xxx
Hi again Jill thanks again for your response, I may ask for those tablets then at my next appt as as you say its a bit irritating!! I have heard other people say exactly what you have said about afterwards feeling a bit down after the roller coaster load of appts. At the mo I cant even imagine it. I had a really busy life beore all thia stuff but now I dont know what I did before all thes damn appointments!!
A bit more about me. I’m 41 with 3 children aged 5,13 and 15, I have a strong family history of bc. My mum sadly died 30 yrs ago of it when I was 9 and she was 32 and my sister wa diagnosed aged 35, 3 years ago and is now doing brill… Even though I knew it was always potentially there it still hit me like a ton of bricks. It was picked up on a mammogram that very kindly nobody let me know about til I rang and chased it 2 months later. They saw calcifications and reassured me really but after 2 biopsies discovered I had a 1.2 cm tumour (I think!) surrounded by pre cancer though , not in lymph etc her neg but ER pos. So I know I’ll be getting tamoxifen. I knew immediately I would go down the bilateral mastectomy route even though they said a WLE would do it. Interestingly though on the “unaffected side” there was a 6.5 cm area of high grade pre cancer (dcis) so blimey am I glad I picked that opyion!!
I was borderline for chemo apparently but I think my family history, my age and my desire to be treated aggresively swung it.
lymphoedema isnt something Ive even considered you know. What an annoyance after everything youve been through. I must admit I havent done those exercises much at all but I should!
Thanks again for your response
Mandy
Hi Mandy
You are welcome if I can be a bit of help I will. I am sorry about your mum and good news about your sister! My auntie had BC but that was over 30 years ago she is 89 and still going although not so strong now lol. I dont have children and a brother not a sister but he did have skin cancer 2 years ago and lost my dad to C 3 years ago! It never rains as they say!
I found my lump last year at 47 so before routine mammos start I assume you have had them as family history. I think you are very brave to have bilateral I just had WLE and that was enough! Mine was grade 3 and I had 2 other lumps of DCIS but they got good margins so only one op needed luckily. I had chemo cos of grade and my age it was nice to be told I was YOUNG ha ha.
It all seems a long time ago now and I really didn’t think I would ever get to the end but if you just take it one at a time it really does pass quickly you will be at the end before you know it. You will have to sit around and let the kids pamper you (although not sure about that with 5 year old!)
Does your hospital do a look good feel good session I went to one at mine and it was quite good meeting other ladies and some lovely freebies look out for them and book yourself on it.
Keep Well and let me know if I can be of any help although I forget sometimes how it was!
The lymphoedema is not too bad but the ugly sleeve and glove I could do without! I have a black sleeve and a “flesh” coloured glove (dont do black in my size) I am not sure I have ever seen flesh the colour of this glove though more like American Tan tights my Gran used to wear - You get the picture? Very attractive not!
Best Wishes
Jill