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Tips required for CMF

30 REPLIES 30
Lily200
Member

Re: Tips required for CMF

Hi ladies,
I have returned with the first double dose completed AND I didn't have to be dragged out the door. Hooray. Hoping not to jinx myself but so much better on CMF so far, as you said I reallly feel more like myself and bald patches have hair of half an inch already, so heading for a pixie cut before too long I hope. I am having mad visual disturbances occasionally which I have to talk to the onc about.The first time I was 12 miles from home and going 60mph when the windscreen startedto wiggle around, flickering wentMum's and broke the journey into short parts when better. It was like I imagine an acid attack would be, but have no experience of drugs so that may be wrong. After I got to Mum's I lost the whole ceiling and could not see anything over my eyebrows. Thought I might check in at opticians incase of glaucoma but could be stressor migraine apparently. It came back for 3 minutes today when Oh rushed me before we went to the unit. Apart from that a delicate tummy but just having to be careful rather than big problems so far. Will be very happy if I manage to keep it like this throughout. Here's hoping! I do get a reaction on the last part of the CMF each time so have to have it in a drip and even got it back today after that change. I have to have the last tiny part of the C dripped at the slowest pace or go faint and terrible pains in my nose and head. Today I shouted stop early so did not get into the state I was last week and then carried on fine.
Sukes well done for not going in. Do you have rads next? Liz you wre right it is 21 days until I go back. My last one will be end of Nov, what a long way to go. Keep bouncing along and hope you stay well
Lily x

Guest user
Not applicable

Re: Tips required for CMF

Hi Ladies,

glad to hear you are plodding throu the CMF - its not as bad as the others well for me anyhow. I was thinking if i was still on chemo i would of had another dose today - thank god its all over and the finish line is drawing closer.

Keep your chins up and hope goes well

sukes

cookieliz
Member

Re: Tips required for CMF

Lily,
Been again today for CMF and feeling ok so far, did get the strange feeling up the nose this time but it didn't last long. Yes it is 3 weeks off for me (I wish it were 2 ) all going well I have my last dose on 28th October the finishing line seems a little bit closer now.
I am assuming you would get your 2nd dose of the first treatment today I hope all went well. Let us know how you get on.
Liz x

Lily200
Member

Re: Tips required for CMF

Hi Liz,
well I have no side effects at all so far, so actually feeling fortunate at the moment. Long may that last but it will be a few more days before I am sure I got away with it. it was not so bad having a port as you don't have the hygiene problems of lines, it is just facing the op really and a few days for the wound to settle, nothing else. I am sure if you warn the family ahead, they will be fine. I let very few people see my bald bits, just keep my hairband over it or wear a hat. I am going through to November too, seems like such a long time doesn't it. I got quite anxious when someone new who had not even had their first dose was going to be finished before me! mad me want to jump ship early, still might it depends on how the CMF goes. the week off pushed my neuts up to 5.8 so that is hopefully making me feel better too.
By the way I get 2 weeks off, are you sure you don't?
Take care and good luck
Lily x

cookieliz
Member

Re: Tips required for CMF

Sorry to hear you had such a rotten time Lily and there I was trying to help you feel better about getting it. I have been getting my chemo in the back of my hand but the veins are getting worse with each visit and I dread having a port put in. In my last post I got my dates all wrong, you are right it is this tues 26th then again on sept 2nd. My sister & neice are coming up from yorkshire (I live in Scotland) to stay this weekend and they have not seen me without hair yet so I am not looking forward to that, never mind all this will be over by November all going well............says me telling myself to think positive.

I hope tuesday is better for you Lily then you get 3 weeks break FANTASTIC!!
Take care,
Liz x

Lily200
Member

Re: Tips required for CMF

Hi Liz,
first one did not go so well. It was fine until the last 5 mls of the 5 tubes when I got a reaction so they had to stop until I recovered. Terrible stinging in my nose which turned into pain and then blocked so I could barely breate through it. Got a terible pain in my head, went hot and dizzy and realised I was going to faint. It was all over ina bout 15 mins but panicked in case it was anaphylactic shock and I was going to collapse or worse!! The nurse was great, very calm, so had to wait until better and have rest very slowly. They think it may be because I have a port so it is going straight into the top of my heart and they say if I have it through a drip with double saline it will be fine on Tuesday. Am I looking forward to that??? Really anxious for next time now. When I got home my Mother in law had died of cancer so it was a rotten day.
On thr bright side I have no side effects today and feel more normal than on eppi, fingers crossed it will last. I have my next on Tues, the 26 same as you. Hope you continue to stay well
Lily x

cookieliz
Member

Re: Tips required for CMF

Hi Lily,
I have had the best week since I started chemo, my energy level is much better this time long may it continue!! I am not on any supplements and wasn't told of any, my mouth has been quite tender but is starting to heal now ( clean teeth 4 times daily, gargle with "Difflam" and have been given "Nystan" for infection and also sachets of "Gelclair" which tastes like bonjela, I have also been treating the corners of my lips with "Germaline" this took away my cold sores and I put lipsil on my lips) sound like a major routine when I see it written down but it does the trick.

Looking at your posts it looks like you should now have been for your first treatment I hope it went well, keep us posted. My next treatment will be tues 29th aug and again on tues 5th sept. My hair is coming on now but not quick enough, checking it every day doesn't help, it's like watching a kettle boil.
Take care,
Liz x

Lily200
Member

Re: Tips required for CMF

Hi Cookieliz,
I should have my first CMF on Tuesday, if the onc thinks I am well enough tomorrow. I had a lot of problems after epi 4 so it had to be postponed. One of the things was pockets of fungus right through my body so not happy about the methotrexate!! Are you taking the supplements for it? At least I should be going into this as well as possibale after an extra week off, well that's the plan! This 2 weeks in a row is really depressing to think about. How far along are you?
Hope you are well
Lily x

cookieliz
Member

Re: Tips required for CMF

Lily
just wondering if you have had your first dose yet?
In answer to your question about the feeling in the nose......no this never happened to me.
A week has passed since my day 8 dose and I am definately doing better on CMF so far, I have developed a fungal infection in my mouth which is not pleasant but I have been advised on how to treat it, apparently the Methotrexate can cause this, apart from this I am on the up and it seems like I may be about to have two good weeks instead of one.
Good luck Lily, nearly half way there!!

Sleepyjean,
Looks like we are at the same stage, hair growth is very encouraging I can't wait to get rid of the wig. I get my family to check my hair every day now I'm like a child with a new toy.

sleepyjean
Member

Re: Tips required for CMF

Hi sukes. I am feeling less tired on cmf, had 4 epirupicin prior to that only side effect gritty eyes and the ever popular wind
mother nature is cruel I think she is really a man, we end up looking like honey monsters who far constantly.
I shaved my head in may and now have some kitten fur and a definate 5 o clock shadow which I admire constantly when my wig is off, how sad am I, have only had day 1 and 8 of cmf. Good luck x

Lily200
Member

Re: Tips required for CMF

Hi Sukes,
thank you so much for the rallying call. I have been struggling badly but as usual when the symptoms start to subside it all looks a little easier to cope with. An extra week off should see me starting CMF positively and feeling well. I will have my 2nd CMF of the first dose, on the day you finish, if the onc lets me start again on time. You are amazing coping with tinies too. I think I remember writing to you when it got tough, I wonder whether it was about this same time. Perhaps we get a mid way crisis!
Thanks and lots of luck to you
Lily x

Guest user
Not applicable

Re: Tips required for CMF

Hi Lilly,

My final dose is on tuesday 18th. I only got a tingling sensation on the nose and that was when the nurse was administering the chemo too quicklu. When i told her to slow down it did get better and it only lasts for a few minutes. It the farting i have trouble with - chemo farts big time.

Fortunately i have not had any chemo sessions delayed 3 epi, 3 tax and 3 cmf and have been okay - tax was rough going but doable.

I was given the choice i can miss some doses but i insisted i wanted everything they throw at me as i want to live and not die!.

you can do it - i've done it with 3 little ones in toe - keep your chin up hon.

hugss

sukes

Lily200
Member

Re: Tips required for CMF

Hi,
well done Sukes, wish I was you at the end!! Congratulations on getting through so much.
Liz, thanks for the update and very reassured to hear you are not too bad. I have had no sickness on epi. I also panic if anything goes wrong on the day, but then get on with whatever it chucks at me. I have my drugs through a port and if they miss it, I really start to feel ill and then get worse symptoms. Someone said you can get a nasty sensation up your nose with CMF, which I did not like the sound of at all, did you get this? I have had a horrid time with epi4 and I am not allowed to have the first CMF on time now. I should get it in a week if declared fit by the onc next week. He said just the 4 big doses of epi alone,would have been enough and now any more we have is just increasing our % even more. I have said I will chug through CMF and see how it goes but will be asking to come out after number 6 if I even get close to how bad I have felt recently. Strangely my neuts are just lapping the chemo up at present and even at my lowest point are high enough for the next one. Unfortunately my insides are just not up to it. I told him, the way I am going I will die of no teeth, a hernia, a ruptured ulcer and strangulated piles before the BC ever gets me!! Tell me how you are managing to do so well?
So pleased to hear from you, I needed some encouragement to get going again. Keep me posted.
Lily x

cookieliz
Member

Re: Tips required for CMF

Hi everyone,
Thought I would pop in to give an update of my first CMF.

Last tuesday I had my first dose and was very anxious about the change of drugs.Throughout the treatment I felt a little nauseous and a little shaken up when it was all over (I think this may all have been caused by my state of mind rather than the treatment)
The following morning I was sick (same as with the epi) but have not had the constant feeling of nausea the rest of the week which I had with the epi. I am feeling a lot better with this treatment so far, constipation and breathlessness has been my main problem but I am not as tired as before.

Yesterday I has my second dose ....day 8 and I am glad now to have a break I actually feel like i'm on holiday. I woke this morning with no sickness and feel fine, things are looking up I hope it continues.

The best news I have to report is .......wait for it..............I now have a very light covering of HAIR even though it is only about 2mm it has been a little boost to how I am feeling.

Lily I hope you feel encouraged that the epi has finished and things may be about to improve.

Sukes I am thrilled that you are almost finished your chemo, I hope you have a big celebration.
Love to all
Liz x

Guest user
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Re: Tips required for CMF

All,

I'm having my last CMF nxt week and the final dose the week after so that will be the end of chemo thank god!. I haven't been to bad on the CMF other than the farting - its horrendous ! kids run when i tell them i going to drop one.

I can't believe i'm near the end. Back in feb it seemed like such a long road but the end is so near now.

You guys can do it and its not as bad as the TAX!
Take care
Sukes

Lily200
Member

Re: Tips required for CMF

Hi Liz,
I will follow your progress carefully, so keep me posted please. I am on TACt2 arm one, the long country route too. Lucky us. I had epi 4 on Tuesday and am currently in that muddled state with focus gone and feeling the effects of this heat today. Drinking like crazy but still have the dryest mouth ever, just cannot relieve it despite constant cold bottles of water helping for small amounts of time. Getting worse as it gets hotter I think.Like you it is the going back for the second one that is spooking me most, as I would have to be dragged there screaming if it was this Tuesday after epi 4. Got to be brave for the long term good I guess!!
I am anxious about changing drugs but will see the onc in between for a chat too.
Sukes I am having all mine iv so no tablets, it can be done if you struggle to get them down. My unit always do all 3 iv apparently. Naz glad to hear you felt a bit better on it,and hope that lasted.
Good luck everyone, whichever part you are on now
Lily x

cookieliz
Member

Re: Tips required for CMF

I go for my first CMF on tuesday was wondering how you are all getting on and what side effects go with it. It was such a relief for me to complete the course of epi as I have struggled through and hope the CMF is better. The oncologist said the side effects may be much the same as with epi, I hope not because on day 8 I can't imagine sitting in the hospital without falling asleep.
Chemo must be the best cure for insomnia !
Liz x

Guest user
Not applicable

Re: Tips required for CMF

Hi All,

Had my top up of CMF dose 1 yesterday. Taking the tablets every 6 hours is a bit of pain but has to be done. I had CMF on Tuesday and to be honest yesterday I was totally out it it. Don't know if i over did it as i went to town after chemo and them my daugthers induction day for school so it might just have caught up with me. Today i'm feeling fine. A day in bed and i feel so much better. I'm still trying to get over the pains from Taxatore but CMF so far hasn't been as bad as epi or the dreaded tax. Naz - My legs especially my thighs are hurting when walking up a slight hill and the stairs. I'm not napping really during the day as it can be hard with 3 little ones. I read your thread about the fish thing but try not to worry too much about herceptin - i know easier said than done. At then end of the day what ever they give you it will be to help you and give you a better chance.

I have made up with the OH but i also am a bit like you within the same discussion we shout moan, laugh and growl with few cuddles - but more than last week which is nice.

Anyhow i'll speak to you soon.

take care
Luv
Sukes

naomifel
Member

Re: Tips required for CMF

Hiya, today was day 8 of the first cycle of CMF - thankfully, now, I've got 3 weeks to look forward to where I don't have to return to hospital. And I've only got another 3 cycles to go. Yippee. Unfortunately, I may need herceptin for a year afterwards but have to confront that if and when I need to. So far I've found the CMF easier to manage. I am very tired - legs struggle to work sometimes - and I still need a nap in the middle of the day - but although I am nauseous it doesn't seem to be as bad as it was with the epirubicin. And - my hair seems to be regrowing - or at least my scalp looks much darker all over, which is a relief as I was expecting it to return grey!

I know exactly what you mean about getting a little TLC without having to ask for it - it drives me mad that I have to spell everything out to my OH. I cannot understand why he cannot guess for himself that I might be a little upset sometimes and just need comforting - even when I don't appear to be upset, and perhaps especially when I don't appear to be upset. I hope, though, Sukes, you are back on talking terms now. Although if you are anything like me at the moment I can be talking to my OH okay one minute, shouting at him the next and laughing with him immediately afterwards. I do keep telling myself, though, that this isn't just about the diagnosis, chemo etc - inevitably we are not always going to see eye to eye. We didn't beforehand so why should anything have changed now!

I am going on and not saying very much. I hope that wherever you are in your regime you are all doing okay.

Keep in touch.

Love Naz

cookieliz
Member

Re: Tips required for CMF

Thanks for posting this Sukes. I am on tact2 trial arm one and have one more Epi then 4xCMF and I was wondering what to expect with the CMF. Please keep posting to let us know how you are doing.
Take care,
Liz xx

Guest user
Not applicable

Re: Tips required for CMF

Hi All,

Just had CMF yesterday and so far so good, but i'm still trying to get over the symptons of the dreaded Tax, My legs really hurt and i will be glad when i get my physical strength back again.

I will keep you posted.

Sorry to hear about OH.... I haven't been speaking to my'n for a few days. All i want is a bit of TLc and even thats hard work or i feel i shouldn't ask for a cuddle he should just give me one. I've assumed he should know me by now. I had a chat with him 2day and told him i just want a bit of tlc so lets see how it goes.

Speak to u soon
Sukes

Guest user
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Re: Tips required for CMF

want to add something else. before i was diagnosed i couldnt imagine coping with cancer but im 6 months on now and i have to say you learn to live with it. ok there are days when i sit thinking is it growing somewhere else in my body? will i live to see my young boys grow into men ive even planned my funeral but then i stop and start to think positive and it helps. so ive got cancer or as my husband and oncologist say youve had cancer its been taken away this treatment is to prevent it coming back. whichever way you look at it we cant change whats happening to us we have to get on and live with it. i was also told by my oncologist to not go on any silly diets just eat a good balanced varied diet and if i fancy a glass of wine or 2 or 3 then have one as long as its all done in moderation. i even went to see the foo fighters at manchester city ground 3 days after my chemo surrounded by 40,000 people!! and we have to avoid large crowds. if you feel well my advice is to get out and enjoy life dont become a hermit it doesnt help.

Guest user
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Re: Tips required for CMF

hello im new to this so bear with me i was diagnosed on 16th jan 2008 im 35 years of age. had mastectomy and was told no lymph nodes were involved. i am undergoing 6months of chemo which started on 7th march. i had 4 doses of epirubicin and have currently had 4 doses of cmf with 4 left to go. i have my chemo on a friday and must admit i feel completely fine by monday. whether im one of the lucky ones please let me know. i feel drowsy as the cmf is going in and get a runny itchy nose aswell but this soon passes. i tend to spend friday in bed i just feel worn out but the anti sickness drugs i am getting work wonders. saturday the woozyness has passed but just feel exhausted. sunday i leave the house for the first time and put my make up on!! but must admit climbing the stairs is a chore. by monday im fine. i have however experienced a sore mouth after my last cmf last friday so hot drinks are to a minimum. also my hair is starting to grow back albeit thin but im now shaving my legs every other day and even the bit down below!!!

naomifel
Member

Re: Tips required for CMF

Hiya, Sukes, am I right in thinking that you are due to have your first dose of CMF this week. Or perhaps you have already had it?

All being well, I should have my first dose tomorrow, having had a week for my WBC to recover.

Let me know how you get on.

Naz

P.S. Thank you so much for your response to my post last week - my OH facing redundancy, me feel really down etc. Still struggling and tempers are flying (my moods are definitely erratic) but just have to ride the rough with the smooth. But thank you so much.

Guest user
Not applicable

Re: Tips required for CMF

Hi All,

Thanks for the comments. I read a thread on how some found the CMF really hard work. To behonest i've found the TAX terrible. The pains are horrific and i've still got them . Its my legs they just constantly hurt, but its the accumlative build up. I've also suffered with my mouth quite badly but i know its got to be done.

Lily - i'm not on the tact2 just been on the epi, tax and now cmf.

Rosie - My hair has started to come back very slightly on my head with the tax i look like a newly hatched chick....... I'm going to the bullring on friday with my niece which will be interesting, and I keep on eating out. I know this is something we are supposed to avoid but i can't remember when i ate out so much. I keep on thinking what the hell we need to make the most of it.

I must admit i thought we would have got more responses but hey ho.

Take care and thanks
Sukes

rosebud454
Member

Re: Tips required for CMF

Rosebud454

Hi Sukes, I had epi followed by cmf. Because you have cmf one week and then the following week, it does sap your energy a bit more, but apart from that I found them quite similar, maybe slightly better on cmf. One bonus was that my hair started growing back during cmf. Remember to make the most of your good days and arrange to go out or do something that makes you happy.
Good luck,
Rosie

Lily200
Member

Re: Tips required for CMF

Hi
I read that CMF was easier for some than epi too, hope that is true. I have just had one epi and due the next on 10 June. Weathered the first one pretty well compared to my expectations. Yes I am on arm one - the long country route! I love the good week, except I managed to eat something dodgy but ok now. Are you on TACT 2 as well? My trial sheet said I had the tablets on the CMF part but the research nurse has already told me they are going to put it in iv at the same time so I don't have to worry about swallowing tablets. Thought this might be of interest in case you find the tablets a problem. Good luck to both of you, hoping for a smooth ride through the next stage.
Lily x

naomifel
Member

Re: Tips required for CMF

Hiya, I've been watching out for replies to your post, Sukes, as I, too, am about to start CMF - this Wednesday, blood test being okay. I've heard mixed reviews - that its not as tough as epi, that its tougher - but I gather from reading the other posts that Taxotere is not especially kind either (as if any of them are!). I understand that there are different routines but I will be having two injections over two weeks (M& F) plus 14 days of oral medication (C) and then a two week break. I understand that I will have a blood test in between the first and second IV chemo (great - I love needles!) and that I will also have to take some additional pill after each dose of IV to counteract its effect (apparently the F is strong).

As I say, all being well I should have my first dose tomorrow so I should be able to get back to you with how I am doing, at least after the first few days, before you have the first dose yourself - what day are you expecting to have it?

Not sure where you are, Lily, in your treatment - I think you are on arm one of Tact 2 trial - but hope that you are managing okay.

Perhaps we can help ourselves through this together?

All the best

Naz

Lily200
Member

Re: Tips required for CMF

Hi
Not yet but I am heading that way too so interested in any comments too. Try putting CMF in as a search because there are some old threads. Hope it goes well and keep me posted please. I was a bit unsure about going 2 weeks in a row, because I would not make that on epi. Do you know whether they are small doses, hence the 2 visits?
Good luck anyway
Lily x

Guest user
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Re: Tips required for CMF

Hi,

Is anyone there who can comment on CMF for me please. I'm due to have it next week and want some tips if any.

Sukes

Guest user
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Tips required for CMF

Hi All,

I've finished 3 epi and 3 tax and now due to receive 3 CMF. Can anyone tell me what i should expect on the CMF? Do's Don'ts etc.,

Sukes