Hi all
Well had my first CMF yesterday no sickness just feel its all in my head mouth very dry and my face is so red i think thats of the steriod injection although i did not get any tablets to bring home just sickness ones if i needed them which i am pleased the steriods just give me the munches and keep me a wake been very flu today but i was so anx yesterday about having my chemo in surgery arm onc recalculated my doses so it was not as harsh on my veins.
;ily i pleased you are going back to work its good to have adiffrent routine from hospitals but i don’t know how you are doing it so soon i am so worn out i feel i need a year off just to recover.
Carol hope you second half went well i am just behind you in that i try count how many i have had not how many i have left because i could cry at the thought of going to april and then starting rads i dont know how many i am having of them do you have to have rads.
hi all, Glad to hear Popet all went ok… Hope your se are manageable. Lilly it does sound a bit daunting the whole return to work thing. Im sure you will manage. I wish you lots of luck and strength in coping with the transition. Carol, hope you are ok now, possibly enjoying a few good days. Im still doing well fortunately. Even my veins are starting to feel a bit better now that im on the tablets. sending lots of cyber hugs to anyone who is gloomy or struggling with se’s xx carmel
Yes Poppet - I have rads at the end of the long chemo road too. Thankfully feeling better - Lily I’m sorry to read on another thread you’ve had such problems. Hope you’re healing now.
Thanks Carmel for the cyber hugs - so glad you’re doing well
xx
Hi everyone, Glad to hear you are all just about OK. I’ve had my penultimate CMF - cannula in first time again, why couldn’t they do that at the beginning! I have felt worse than previously, even got the sick bucket out on first night, but thankfully didn’t need it! I seem to have a bout of vertigo at the mo which is making me feel giddy and disorientated when I move my head too fast. I’m hoping this is a virus and not anything more sinister. Feeling really excited about going for rad planning app next week, when will have a CT scan. Sad isn’t it, but it is such a change from my usual routine. My head rang to ‘talk’ about my return to work after Easter, as he needs to let my replacement know where she stands. He seems really happy to let me back part time, and says my timetable will be very flexible … not sure if that is good or bad! LOL
Big hugs, Shelagh x
I’d also like to say that I’m glad you’re all feeling reasonably ok. I had my cmf as well yesterday. Five down only 3 more to go! Hurrah. Only two attempts for the cannula this time, even managed to use one of the veins that had been playing up from epi, so hopefully we won’t have too much trouble with the rest of treatment. I was beginning to worry just before Xmas that they would want me to have a line in and didn’t really fancy that at all. So far so good again with this dose. I’m taking the sickness meds and ranitidine for heartburn, but not experiencing any side effects so far. Hope the rads burn is starting to heal up now Lily. You’ve had enough things to put up with during your long journey. I had a letter from work yesterday informing me that I go on to half pay from this month so am popping in to see them at lunch time, after a visit to the pub with some of my colleagues, to see how I go about claiming Incapacity for the next couple of months. I’m not having rads, so hoping that I will be fit enough to go back just before Easter. They have a good phased return system so with Easter and the holidays I’ve accrued over the last few months, I think I should be able to ease back into ok.
Get my bloods done tommorrow for 2nd cmf of 1st cycle if that makes sense i still very anxious had not a lot of side effects with first one so hope thats its the same i do have alot of tingling in my legs and they feel heavy but will mention this again to chemo nurse.
Did yous get steriod tablets to take after cmf as i only got sickness to take if i need them
.
Hopefully my veins will be better in my good arm for next cycle.
Its nice to hear that yous are returning to work it makes me feel i can do this as i feel more emotional on cmf than i was on epi i keep wanting to throw the towel in but maybe its just seems i long haul
No I’m like you, I only get the steroids as part of my IV treatment, none to take home. I’m glad about that as it means my sleep pattern isn’t disturbed as much. I must say though that I do tend to drink lots of water on my first couple of days and then end up at the loo at least a couple of times during the night! Can’t win really. My veins are definitely starting to improve now from the epi, and only three more IV treatments to go. I’ve been into work today and we’ve arranged a meeting on 10 March to discuss phased return. I can always change my mind nearer the time if I don’t think I’m ready to go back, but it does make me feel more positive looking ahead to a return to normality after 8 months of surgery and treatment.
Hi,
wow we are moving along on this thread. Hope you all feel like you are making progress on that marathon trip called epi/cmf. So great to read that it has been a very successful treatment for BC, and that was from an american doc and they are way ahead of us.
I brought steroids home with each CMF dose too and when i forgot them I got urticaria everywhere so always took them after that. I think it was connected to my reaction to the Cyclophosphamide part. I too was very excited to be on rads and wouldn’t worry if I had to do that bit again. A burn is easy peasy compared to chemo and no cannulas either - what bliss. I guess our expectations are quite low after chemo!! My burn is fine, just peeling a lot. The trick is to stop the skin on the underneath of the radiated boob touching the skin of your chest. So it only gets you if you had a lumpectomy and have big enough ones/ old enough ones to head that far south.LOL.
Just a word of warning - I was given my hormone tablets’ prescription at my rads planning day. So it might be an idea to read up the threads on hormones so you know a bit about it before then. I read that there is an expensive brand of tamoxifen called nolvadex-d and that it had few or no side effects. After reading about people being woken up all through the night, every night I talked my onc into prescribing it. The GP then just followed suit. Anyway just a tip for you to follow up if you wish to. I have been on nolvadex for 7 weeks and have had no hot flushes or joint pain at all so would not switch to the ordinary brand for anything.
When my SSP was about to run out I was sent a form, which explained how to claim incapacity benefit but it took them ages to process it. I got £75 weekly, which is not means tested, it is an automatic right. It changed in the middle of my claim and went down to £60 unfortunately. They made me go for a back to work interview at the job centre today and it was a waste of time as I have a job! Lalala check out what will happen regarding your pay before you go back. In my case, on half pay, it meant even if I worked part time i received no more pay than if I was at home, so I didn’t go back!!
Big hugs for all you brave people fighting off the poison this week
Lily x
Hi everyone - Lily great to hear from you and read your words of wisdom!! Is the good news about the success of this chemo recent - every bit of info helps!!
I have all the drugs to take home on cmf as I did on epi - plus something to prevent mouth ulcers. So I’m still rattling but don’t mind if it helps to prevent the se’s. Feel quite normal at the mo - just tired - soooooooooo different to epi’s. Glad some of you are planning the next part of your lives - 8 months is a long time for treatment etc - I’m sure it knocks your confidence a bit thinking about returning to work. No idea what’s happening with me yet on the work front - but I s’pose it’s early days. Mind you on SSP - I could do with more £’s!! Shelagh - how do you feel about returning to work?
Great news as well about the “epi veins” improving - my arm is still really sore so I have that to look forward to. Any news of your hair starting to grow on cmf!!!
Good news on the hair front. Mine is now like fuzzy felt and started to reappear after my first cmf. It is definitely starting to make an appearance but not sure what colour it is going to be. I was mainly ash blonde before but the regrowth could be anything from blonde to grey/white, we’ll just have to wait and see!! Could be interesting.
Hi Jackie
That’s good news !!! I used to think I was blond … but who knows now?? Fuzzy felt would be good after bald!!! How do they do a phased return to work where you are? I’m Year 2 in an independent prep school (owned by my boss - hence my £10 a day statutory sick pay!!) - so I think it’s sort of up to me when i feel fit enough, but obviously my replacement needs to know. I should finish chemo beg of April then 3 weeks of rads - don’t want to go back before I’m ready, but need some money!!
Hugs to everyone - especially if you’re having a rough time - if I can do this, you can!!
xxx
I finished my epi in december and got my my first CMF about 2 weeks back…after few days i experienced lots of palpitation and also choking sensation in my throat…went to a and e…doctors said one of cardiac enzymes Troponin I slightly high, i was kept for 2 days for monitoring and then discharged…now iam on break as my onc will see me on 28th iam off chemo at the moment.
Has anyone experienced the same? If yes then was the chemo stopped? Is this happening because of my age I am 70 yrs old and really want to have these last 4 lots of cmf.Please do provide your input.
Many thanks for your informative posts Lily. I have made a note of nolvadex-d ready for rad planning meeting next Tue. Interesting what you said about incapacity benefit too. I was sent the forms to claim when SSP finished, but they didn’t send my original med cert and have been waiting for it for ages. I tried to see if it was means tested on the website, but I defy anyone understanding anything on there … and I’m a teacher - what hope for those more reading challenged!!
I’m on half pay at the mo and seem to be managing on it, but it runs out at the end of April when I will have been off work for a year. Time seems to have both flown, and gone really slowly.
I’m not sure how I feel about returning to work Carol. Happier that I will not be expected to teach Lit and Num groups as I’m not really up to date with the new frameworks. I was a ’ floating teacher’ last year based mainly in Y6 with small SEN groups, but my timetable for this year was a Y5 Lit group, a Y5 Num group and a Y4 Lit group, as well as covering Y4 & 5 classes in other subjects. My replacement will now continue with my timetable for the summer term, and I will be covering anywhere and everywhere replacing our regular 2-days-a-week supply teacher. This could be good, but may also be hell! I will need the £’s too though, so will have to give it a try.
Sorry to hear vein pain is a problem for some of you. My epi arm was bad too, but seems to have eased whilst on CMF - I can put my arm above my head without any pain now and there is only a bit of pulling. I did have a scare just before Christmas when I got a large red, hot, itchy swelling just above my wrist. I thought it may be a thrombosis and had it checked, but as it started to reduce in size they reckon it was just one of my ‘epi’ veins trying to heal. I still have a bruise-like mark, bit like a varicous vein, but I hope that will eventually go away. My hair also started growing back as soon as I started CMF and is now about an inch all over … sooo much warmer. The colour is a bit disappointing though - mainly grey with a bit of blondish brown I used to be ash blond like you Jackie.
Shammo I haven’t had your se on CMF - sounds a bit scary. I hope it gets sorted for you so you can continue the treatment.
Like Lily says, it seems weird we are all starting to think about the end of treatment - must be a good thing!!
Hi,
Carol, the rads nurse told me they recommend you take 3 weeks off after rads. You can’t get a back to work certificate from the GP for more than about 2 weeks ahead so you can’t plan too far. I know some people work through rads but after epi/cmf I wasn’t up to it. I had a 50 mile journey each day so that was another factor for me. I have taken 4 weeks off from rads as I will be going back full time. Going back to school a couple of weeks before half term to ease myself in and also not returning on a Monday, so the first week is short.
Shammo, epi can affect your heart, which is why you have to have an ECG before you start. It might be an effect from the epi or from the new drugs. One lady I write to had heart trouble and she was not allowed to continue but she was moved to another chemo drug. They did not just stop the lot. I think you will have the enzymes and your heart checked out and they will decide from what that does or doesn’t show up. The other lady was 40ish I believe. I don’t think age will be a factor but the condition of your heart will be. Good luck.
Hair is sounding impressive everyone. The pixie look is in this year.LOL . Sainsbury do a nice organic, no chemicals hair dye in quite a few shades. I did mine during chemo and it really makes the hair block together and look thicker. I have badger shaded bits popping through again, so going for a 2nd dye next week.
Take care
lily x
Hi all
Well had 2nd CMf of 1st cycle all went ok but has have yeast infection in mouth and throat(yuck) does anyone else get a really bad head and bright red face thenight of there cmf i did on epi but not as much i think its the steriods they injected.
My hair had started to grow on my 3rd epi which scared me because i thought the chemo was not working but onc said it was i had strong hair follices but it slowed down to just fuzz but still i look every day and get excited when i can see new growth. Hair on the lip is back did not need that no eyebrows yet are down below.
Take Care
Poppet x
Yes poppet I get a really, really red face the day after cmf. Sometimes a bad head too. I used to get a less red face when on epi, so assume. as you do, that its the steroids. I have a friend on cmf that gets really bad thrush in her mouth. best wishes to all S x
hi everyone… hair regrowth! me too. I have fuzzy felt which is great but as some of you have said… the colour or shall we say lack of it is a tad disappointing. Looking in the mirror i just look a bit less like an alien, which has to be a good thing.
Thanks for all the tips lilly, I too am going to make a mental not regarding the hormone treatment.
Im on my second cycle of Xeloda now and so far so good. I seem to be getting sore feet now which is a known side effect but manageable. Overall i just feel a bit more normal… at last. This regime is so different to epi!!!
take care all
xxx carmel
Hi everyone - just needed to let you know I’ve had a fairly “normal” weekend at last!! Yippee!! Hope the drugs are being kind to you all - keep your fingers crossed for me for some fuzzy felt growth!!
xx
Hi Fuzzyfelters,
might be worth asking about reducing the steroids when on Cmf. I dropped one each cycle and lost the red face and blurred vision that had been really slowing me down. I couldn’t come right off them as I react to cyclophosphamide but only took 3 each cycle. Nurse said many people take nothing on cmf. I only took one anti sick tablet, the first night on cmf. They let me reduce my dose as I felt like it, so worth asking. I found all my side effects were coming from the so called cures they gave me!!!
The hairdresser told me gentle massage on the scalp encourages blood flow and helps hair grow faster. Worth a try. Mine is over 3 inches now and so I was very peeved to hear that some of the aromatase inhibitors make your hair thin!!! I will go mad if it happens when I switch to AIs.
Take care
Lily x
Hi all
Well we all seem to be having some hair growth i feel like a child i keep looking in the mirror and smiling when i see anew little stubble OH keeps on rubing my head i am frightened he will rub my bit of fluff off.
Hows everyones treatments going? I must say i do feel better on cmf but still yuck i have this prickling sensation in my legs they think it may be nerve damage but i cannot get straight answer my onc is very hard to talk to she looks at me as if i have gone crazy i sometimes feel like saying here swap places and see how you feel (sorry moan over).
Lily have you finished all your rads now are you changing hormones i have to have them but are not so hot on whats available and se.
I cannot beleive that i have managed to take longer walks and do a little bit more in the house as with epi i was acouch potatoe i could just could not be bothed to move i hope this continues like you Lily my bloods last time have shot up as i was always very low on epi.
Well take care i am away to check hair growth
Poppet x
I used to be ash blond like you Jackie.