Hi All Had my first CMF WED Had a panic attack after .I am so fearful of everythind not just chemo. Even Panic about visitors or the phone ringing. Appetite not good , had the runs today rang onc nurse said to take imodium. At least I’ve got through first I am having to take ‘C’ in pill form for 14 days. F & M
intravenous day 1 and 8. I shall be so glad to finish the treatment. Just hope it works prognosis good. WLE smallish lump and I lymph node involved. Listening to relax tape but not easy.
Love Bobbiexx
HiKay Yes think its easier but my mind has’nt left the EPI yet so perhaps when I don’t feel so scared will be able to move on.
Bobbiexx
Bobbie, sorry your going through a bad patch, I hit an all time low at the end of EPI and beginning of CMF. Keep going, hair will appear soon (if not already) which helps a bit; the panic gets less and sleep eventually gets better. Just had CMF 3, one more to go, so a bit ahead. Wonder why they do such different regimes for cmf? I get hte lot IV every 3 weeks.
Thinking of you, here’s a big hug, Zoe ((()))
Hi Bobbie, I’ll be starting 4 x Epi in a fortnight, followed by CMF for four months, by IV on day 1 and day 8. I have taken a lot of persuasion to agree to it, pressure from family and friends against my own instinct to refuse it as the statistics didn’t convince me the horrors I will endure are worth it - and the difficulty for my kids (21, 19 and 16) living with me through it all. Their argument is that they want to know I’ve taken everything science offered me that might reduce the risk of a recurrence. With this in mind I have visited the chemo suite today and the very comforting nurse said it’s rarely as bad as people expect it to be, and when I said I doubted I’d be able to grit my teeth and stick it out, she said she has never known anyone drop out of the treatment without finishing the course. The relaxation tape sounds a nice idea, I’m planning to take my iPod with me but am going to practise visualisation techniques before going. I wish I knew about yoga but have left it a bit late to learn. Hugs and best wishes to you. Lyn xxx
Hi Bobbie - so glad to hear from you! Have been checking the discussion threads and my email but didn’t want to harrass you to find out how you were doing. Just remember, you’re halfway there now. I know exactly what you mean about visitors, phonecalls etc - it got really bad a few days ago when the phone just kept ringing and ringing and I just could not answer it. I had to ask my sister to ask my family to give me a bit of space a day or two later when I eventually managed to send her a text - of course, not only am I now worried that I’ve upset my family but they are also worried that I am spending too much time on my own so much so that they want to visit…!!! But I wouldn’t be without them and its definitely good to know that the nurses are on hand whenever we have any concerns. I hope you are feeling a little better now.
Fortunately, I had my second dose of Epi on Thursday - my neutrophil count had doubled in a day - which was reassuring - and although I feel nauseous again it doesn’t feel half as bad as it did after the first dose - but mustn’t speak too soon. Certainly the ‘novelty’ has worn off now and I am definitely not looking forward to the remaining 5 months or so of treatment - as if I ever was - but I do keep reminding myself why I ‘chose’ to go through this - Lyn, I really do think you’ve made the right decision - its not going to be easy but your friends and family will be there to help you through it all too. When the surgeon told me that he didn’t think I would need chemotherapy - I’ve had a mastectomy (with immediate reconstruction) - I was so relieved but not only after talking to a few friends subsequently was I convinced that he was only trying to see me through one step at a time and that, therefore, I would indeed need chemotherapy I did also begin to think that compared to Tamoxifen - which I will also be taking - I WANTED chemo - that is, the chemo would destroy the rogue cells rather than just prevent them from growing, so I can sympathise with your children.
I wonder too why they have different regimes for CMF - I shall be following the same regime as Bobbie and Lyn - but would much prefer it if they would just give it to me all in one go - but then I don’t know how I will react so perhaps not… I’ve also wondered why some people are given FEC and Taxotere - does anyone have any explanation?
Anyway, enough of me for now - I know I’ve rambled on and not said anything at all - but I need to take my next round of anti-emetics! I wouldn’t mind if with all these drugs I also experienced the same high I occasionally experience when I have a glass of wine but all I get is the hangover - and nothing like I’ve ever had before.
Lots of love, Naz
Thank you, Naz, for your lovely and helpful post. It’s great to hear you don’t feel as bad as after the first Epi. Nobody from the oncology dept has mentioned neutrophils - do they check this before each treatment? I too had mastectomy and immediate DIEP flap reconstruction. Chemo will be followed by rads, don’t know how many, and tamoxifen. I was told FEC and Taxotere was an option, a shorter but more aggressive course, and taking into account my defensiveness when first told chemo was recommended, and the fact that my youngest has GCSEs next term and it’s a particularly hard time for her already, the oncologist advised me to have the longer, slightly more gentle Epi-CMF. Roll on 2009! Love, Lyn xx
Hi Naz Repylying to you via site do thst Others may hopefully read this and if they are going through the same well it might help. As I have mentioned before I came off Ativan a few years ago and had slowly rebuily my confidence. Having Bc and chemo has sent it all crashing again . Have two visitors from abroad sometime in May cuz from Aus and old friend from Canada, I cannor stand the fear and panics of them visiting me , they won’t actually be staying with me but with relatives one in Cov the other nr Dudley . .I think I am going to be honest with them tell them how I’m feeling and offer to visit them at their relatives, obviously I want to see them but have to pick my own time due to chemo cycles, I would be interested in finding out if anyone else has suffered in this way mainly due to the panics. By the way I live in Rugby so neither are that far to visit. Am I being a coward or coping the on ly way I know , at this present time… Had to unplug phone from my bedroom the noise of it going off sends me into a flat spin. Sometimes I have to ask hubby to tell really good friends I just cannot talk at present., will ring them when I feel more human. All of them have been very understanding.
love Bobbiexxx
sorry just noticed loads of speeling mistakes , on last link … hope you can decipher it.
love bobbiexx
I really do sympathise, Bobbie - I have come close to pulling the plug on the telephone myself and even if it didn’t work I have tried to tell friends I’m not ready for a visit - I had an unexpected visit from a neighbour just the other day but could not turn them away and instead felt exhausted two hours later when they left! Ah, manners! But as you say, the best of them will understand - and we do have to tell them ourselves whether we are up to a visit, however difficult it might be to say at the time. I think you are going about it the right way - you are the only one who can tell how you are feeling - or going to feel - from one day to the next in between cycles - and if you are visiting them you can choose to leave when you prefer rather than feel awkward asking them to leave if they visit you. Although, of course, there is the travelling to consider - but as you say neither Coventry nor Dudley are too far to travel to and from. I’m just pleased to see you back on the forum!
Ah, so Epi-CMF is more gentle, even if it is more prolonged. I didn’t have a choice but am glad I’ve got the less aggressive course, although I also hope its also working! I had a LD reconstruction - about 2 months ago now - still have a seroma - which is awkward when trying to sleep - but which cannot be drained because of the risk of infection during chemo. I was fortunate in that out of the 17 lymph nodes that they removed not one of them appeared to be infected but I do find the whole experience really upsetting when I stop to think about it - mostly the loss of my breast (even if I do have a replacement). I struggle to look at my chest and struggle even more to touch it - but keep telling myself to just give myself more time… Enough again. This is perhaps more information than you would prefer to be reading… and I’m trying not to be so maudlin…
As for 2009 - indeed, I’ve written this year off, which is perhaps not the way to be looking at life under the circumstances but the only way at the moment that I feel I can cope with all of this for the time being.
I’m so sorry for being so misrable - wasn’t my intention. Perhaps someone can tell a joke and give us a little laugh!
Lots of love, Naz
Hi Naz You are not miserable !!! You may feel it and everyone on the site must feel the same. We use this sight to draw knowledge and comfort from one another, thats what it’s all about. Some off us may have different ops to the other one and different chemo but it all boils down to us being united in one course to kick this s****y stinking disease into touch. Wish I knew why I get the panics and sheer unadulteraed fear, when lots of you get through it without , although you all must be very frightened at times. Would love to hear from others who seemigly cope with this far better than me.
Love Bobbiexxxx
Dear Naz, dont ever think you are sharing too much when it comes to feeling crappy and fed up. Write it all down in this safe place and post it! Thats what we are all here for, each other, just like Bobbie said. Here’s something to cheer you up. Today my neighbour 4 doors away told me about his old uncle in his eighties. He is totally bald, he had cancer in his TEENS and had the very first chemo, they must have blasted him with massive doses - his hair never came back! Well, he’s a really cheerful and energetic old guy, still working as a milkman. An inspiration to all of us I hope.
My grandchildren (3 and 6) are coming to stay on Wednesday so I’ll be moaning by Sunday!
love Zoe x