Hi lilly you are up as late as me… bad girl… I keep meaning to go to bed early but just don’t seem to manage it. I have always been a night owl rather than an early bird. I knew you’d post some good tips… Hope that helps Poppet! night night xx carmel
Hi Poppet
I’m on the same treatment as you. I had accelerated epi every two weeks, which I finished at the middle of November and have now had two double doses of cmf. The epi was by far the worse, No2 nearly wiped me out with dizzyness, heartburn and fatigue, but I got through it. The cmf is so much kinder, no dizzyness at all which I think was the worst se for me. I still have my tired days if I do too much but I know that if I pace myself I will be fine. Just had a fantastic Xmas with my younger daughter, SIL and granddaughter, who will be 3 in January. It was lovely to have a totally believing person in the house at Xmas, her face was a picture when she saw all her presents. I hope you all enjoyed Xmas without too many se’s.
Jackie xx
Hi
Thank you all you have give me some reasurance about cmf i think its that unknown feeling again and i have these veins that don’t want to play ball.
But come new year they will have wine flowing through them and not chemo so that might perk them up as i don’ get my next chemo until 9th so plenty of time to dilute the alochol and if i am sick are dizzy so what i will of enjoyed it .
Thank you take care
Poppetxx
Hi,
Carmel I would rather be up all night and sleep all day, doesn’t do much for the bags under my eyes though!!! I just can’t face going to bed it seems like such a waste of feeling good time. Hope you were well enough to enjoy Christmas.
Jackie I spent Christmas with my 3 year old Grandson. He was so excited he nearly burst when he just opened Christmas cards with Santa or reindeer (the wettest animals in the world.LOL) on. What a brilliant age to watch their wonder. He has had me wearing a cracker hat since Christmas, hope I can ditch it soon!!
Poppet, I had to have a port in my chest, as they told me from the start that my veins would not manage 4 epi let alone 12 treatments. Epi hardens the inside of the vein making it narrower and they could not get in mine easily beforehand. If you have a lot of vein trouble they may suggest having one or a line put in. Try massaging them regularly with arnica or vitamin E cream, it helps some people. CMF is known to be much milder and cause fewer problems, my research nurse told me that when I was scared about changing. Know what you mean about the unknown and how alone you feel with that part.
Big hugs for the next stage
Lily
Great to hear about the three year old grandchildren… my five year old is a believer which is just fab but I have to be very on the ball with all his questioning. He’s got a bit of a science brain it seems… hell bent on catching me out. Fortunately my ten year old is well on board with the conspiracy so is good at helping me out. So far so good on the tablets. Only a little bit of sickness so far and tiredness i can cope with. Long may it continue. Actually i went to a pilates class yesterday- Hallelujah, that’ll be a first then. Hope to do that again, if this form continues.
hope all are well. xx carmel
Hi all, glad to hear you’ve all been having a good Christmas. I have too. No little ones to make it magical, but big daughters to make it special. It’s been great having distractions … makes you forget for a while what we’re going through. And it seems like ages since the last chemo, and I still have another week till the next one.
Poppet and shammo, sorry to hear you have suffered from the epi, but it does seem to be the treatment that everyone finds worst. The CMF is much easier, but for me it has ‘quietly’ affected my white blood cell count making me very susceptible to infection. I too have had lots of problems with veins so had a Hickman line fitted after 4th dose of CMF. It was great for a while, but then I got an infection in it which has delayed treatment a lot. They’ve taken it out now, but my veins are getting much better since epi’s stopped, so the cannula torture has not been too bad.
Can’t believe you’ve managed to go to exercise classes Carmel. I can’t wait to go swimming again … but am not even going shopping at the mo so think water mixed with other peeps is defo not acceptable. I really don’t want to get another infection 
Hope you all have a great New Year’s Eve celebration … and best wishes for a more healthy 2009. S x
Hi all
Hope everyone is ok and ready to enjoy the new year celebrations.
Lalala when after the treatments can we go swimming as i love going the thought of exercising at the momment makes me tired i don’t know how you are managing to do that Carmel.
I thought about a hickman line as Lilly200 also had one but i have heard so much about infections and i have had thrombois in the past and i have heard you are at high risk of getting one i think the veins have become more upsetting than the chemo.
Well this is my week for not been able to focus as eyes are sore so i will wish you all a healthy 2009
poppet xx
Hi girls
After 5 days without the internet I’m back - hope you’ve all had a good Christmas & hope some of you will be able to have a fab NYE. Lily - I cannot believe you finish tomorrow!!! Yippee!!! Well done you - this long country road is very windy indeed (windy not windy!!!). Loved reading about the little people at Christmas - how fab!! My lads were here for the festivities & I wasn’t feeling too bad tho’ epi 4 has a lot to answer for!! Start cmf on Fri bloods willing - and hope to feel better than I have for the last 3 months!! Still … as long as the chemo does its job that’s all that matters…
Good luck to anyone starting/having/finishing treatment!!!
xxxx
Hi,
just wanted to wish you all a happy new year. I finished rads on 31 Dec so goodbye to that annoying journey each day and hell lie ins. Just in time for the school run again!! I should be going back to work this month after 10 months off, so that is a big thing to think about. I am trying hard to do more and build my energy level sup. Most worried about not being able to do the basics whenever I want, when back teaching!!!
So this is the year you all finish your chemo, hope you feel like time is starting to move along a bit more. I found going in to a 28 day cycle made the time go much slower and got a bot cheesed off at times - well a lot cheesed off really! Poppet you sound just like me with the lack of focus, used to drive me mad but CMF does not so that, so soon be gone. I had a port which is buried in your chest with no parts visible to the outside, not a line. Carol I agree b… epi 3 and 4 had a lot to answer for, as mine accelerated each time. Hope Friday goes well, my neuts shot up on cmf so hope yours improve too. Lalala you are having a tough time with your bloods and infections. Hope they get it more settled for you soon. Carmel I can’t believe you are managing exercise, well done superwoman!! Jackie hope cmf is still going ok, mine built up and I had the runs badly on the last doses.
Hope you all managed to enjoy a little of Christmas at least and take care with all these bugs about. I had a flu jab yesterday, ready for being back at school with 1200 plus ‘bug bearers’. LOL
Lily x
How lovely it must feel to have finished your rads Lily … but ohhhhh the thought of going back to work makes me droop with tiredness. Do you really have to start so soon after treatment - or is it by choice?
Poppet, not sure how long you have to wait till you can swim. I guess it depends on whether rads cause problems with your skin or not. I’m about to renew my gym membership in the hopes I can use it a bit more this year!
I hope CMF has been ok for you so far Carol. My next one is on 6th Jan, so will be back down the abyss with you again soon
Hope everyone else is OK? Big hugs, S x
Happy healthy New Year everyone! Ok which one of you lovely ladies was telling porkies?! Had first cmf today - horrendous problems getting cannula in (will prob need a line) and have felt really disgusting since … have you heard of people feeling bad on both epi and cmf ? If so this will be v tough - & my next chemo appt is Weds. Certainly can’t face that at the mo
Lalala - good luck for the 6th - hope you get on better than me…
Lily - even the flu jab is good news! Sop pleased you’ve reached the end of this marathon & are facing “normal” again (not that it ever will be I know). I could certainly do with a bit of normal at the mo. You have kept me going on here - having the same treatment… I may just need you a little longer …pls…!!!
Going for a sob…
xx
Hi,
oh Carol sorry to hear that. I dreaded every one but the seconds were not as bad as I thought they would be. Strangely my neuts shot up to 5.8 on each of the second CMFs. Every single second one went higher than the first. A lovely lady I met on my first appointment (to be made radioactive before the op) has been on exactly the same treatment as us. The only symptom she had on epi was that she got a little bunged up and a couple of her nails changed colour!!! I had so much trouble I could not believe she was so lucky. I really struggled and had artificial tears, artificial saliva, steroids on my tongue, thrush medicine on my tongue, thrush tablets and 6000 cures for constipation, piles and total blockages!!! I was beside myself that someone else could be so lucky. When I bumped into her after cmf (we had doses on different days) she had lost weight and been really ill on cmf needing a big blood transfusion and injections each time to boost her system as neuts dropped through the floor. She had also had numerous infections and been unable to eat for a lot of it. It just affects people so differently. Lalala you might be heartened to know that she went on to complete the treatment and was fighting fit ready for rads, finishing just before me. She also lost weight and looked very glam!! Carol what are your side effects? I found that if I had a stressful time in the unit, I was always much worse straight after. So we started going early and going in the hospital canteen for a big cooked breakfast each time. CMF always needed me to keep eating and drinking loads on the day. Did you get the swimmers nose on the cyclophosphamide? That is the drug that usually causes a problem if any are going to on CMF, so I always had mine last. They had to change the way I had that several times before it settled. Thinking of you and I always suddenly got better on the weekend before, hope you do too. I would be glad to hang around and try to cheer you along through this long stretch.
Waiting for my call to summon me in to work to talk about my return!!! It is up to me when I go back really as my GP will sign me off for as long as I like, he says. Trouble is my wages are really low now and I want to have a nice holiday this year so need to fill the coffers up a bit.
Take care this week and big hugs to anyone diving down the dark hole
Lily x
Hi
So sorry to hear that cmf isn’t treating you well, Carol. As you know I’ve now completed my first two doubles and am due at clinic on Friday for bloods for 12 Jan chemo. I’ve been lucky that the se’s are much less on cmf than on epi. I hated the dizzy feeling on epi. I did have a slight reaction to the cyclophosphamide in the chemo unit and had to sit and wait while they pushed an extra bag of saline through. It made me feel hot and dizzy, but soon wore off. I found that sucking sweets while they were giving me the cyclo helped to stop the funny nose feeling. Like Lily my bloods were better for my day 8 treatment than they were for day 1 but not as high as Lily’s.
It must feel wonderful Lily to know that your treatment now only consists of taking tablets. I can’t wait for that. Not too long to wait though as I am not due to have any rads as had a mastectomy. I don’t envy you going back to work so soon. Will you be able to go back on a phased return or will it be straight back to full school days? I know that once I feel up to it, work will sort out a phased return for me, so I will be able to slip back into the swing of things gradually. On top of that I have been accruing holiday days since August so will be able to shorten each week with holiday if I feel the need.
Is it your last one on the 6th Lalala. I’ve lost track now. Looking back I know that you hoped to have been finished before Xmas but with your low wbc everything got delayed. Good luck on Monday and hopefully the se’s won’t be too bad.
Glad the tablets are good for you Carmel and will be thinking of you on Friday Poppet while I’m waiting for my onc appt and bloods.
All the best to anyone I’ve forgotten. Here’s to a fantastic 2009.
Jackie xx
I have one more after the 6th Jackie, scheduled on the 27th Jan, as the onc decided to change me to CMF one week then 2 weeks off, like epi. I was scheduled to finish on 16th Dec originally!! Never mind though, I’ve had lots of time to recover and get my neuts back up, and it gives my veins time to plump up too. I only found the first day of CMF a bit off Carol - straight after the treatment heady then headachy the next day. I hope the se’s clear up fast for you and that you don’t have the nightmare that Lily’s friend had. Shame you have to go back to work so fast Lily, but needs must I guess. I’m hoping to go back part time after Easter, and may try to stay part time if I like it and can afford to. OH thinks its a good idea, which is half the battle! LOL
Take care all, S xxxx
Hi,
well time is moving along for everyone. If you get a chance look back at one of your first postings and see just how far you have all come. It is so brilliant to be off chemo, although you need the patience of a saint waiting for the final one to disappear!! That will be all of you before you know it, the last quarter definitely goes faster. I am in the strange situation of being on half pay, which means that I receive the same amount by working part time as not going in at all. It is also worse for my classes if they have lots of changes, as it is unsettling. So it is everything or nothing but I will ask for less lessons and hope they will be agreable. I thought I would go back close to half term in case I get completely pooped. I have a sore under the boob burn from rads at the moment. It got worse after I stopped and is really dark. Apparently I keep cooking and peek 7 - 10 days after finishing!!! So that might delay me a bit, time will tell.
Jackie I had the same reaction to cyclophosphamide and had to have it through a drip instead of injection. Whe I stilll had it , but milder they slowed the drip to take an hour, on the slowest speed. When the onc heard about my reaction he made me have piriton as a precaution. That made me sleep through the whole thing, just knocked me right out.
Good luck everyone in the nuclear bunker soon
Lily x
Hi
Thanks so much for your support everyone - I’m beginning to feel better after my first cmf! Work is still a long way off for me - take it easy girls if any of you are thinking of returning. You’re lucky to be on half pay Lily - but totally understand how unsettling it is for the kids if there are lots of changes.
Good luck everyone - hope you’ve had a good weekend
x
Carol, so sorry that the CMF didn’t get off to a good start… hope things improve. Its such a lottery isn’t it. Im now on the tablets and feeling fairly normal it has to be said. Iv been warned that the side effects are cumulative so Im making the most of getting over epi and not having the Xeloda side effects yet! hurray. Like you lily, i had lots of problems with teary eyes and needed the tear drops. glad im through that… well i hope.
Good to catch up on all your news…
Im getting back to doing a few jobs and being a stroppy mum again. Im sure that the kids prefer it!!. On their case about stuff that just gets passed on during the difficult weeks…
Im not superwoman, though id like to be, but i thought pilates was within my low energy capabilities and im right. You go at your own pace and don’t get out of breath because its not a cardio workout. Id recommend to anyone on the mend.
I haven’t got a job to go back to… so when im ready it means applying. Will def put that off as long as possible.
Glad to hear progress is being made… it is very encouraging for those of us with a bit to go.
xx carmel
Hi all
well getting really nervous for Friday and first CMF they had take blood from top of my foot and the chemo going into affected arm not sure what happen next week as they said my veins in other arm may be ok by then my veins have become such a pain it making me more upset than having the chemo.
Hope you are all doing ok?
Is it me are does anyone else find they can not rember things i am finding i need to write everything down my kids call it my chemo brain.
All take care going for my sleep as i am like a baby need afternoon nap
x
Hi there
Yes it certainly does seem a lottery!! Had second part of first cmf which means I’ve done 6 chemos and have 6 to go. The epi has really wrecked my veins so I can sympathise poppet - I was really worried today too - but it took 3 goes which was better than last time. Have stopped crying today - I’m sure it’s all drugs related… sorry to have been a whinge couldn’t help it - and I knew you guys would understand. And can you believe I felt guilty for not staying positive - that word has so much to answer for!! Hopefully the post chemo drugs wil;l keep me smiling for a couple of days. Chemo brain is a definite too - my family think I’m affecting them by osmosis now!! They’re getting very good at finding the right word for me when I’m stuck and finishing my sentences!! Afternoon naps are great - take them when you need them and don’t beat yourself up.
Lily - what news of work? Term started today - again I felt weird/upset not being part of it - must be mad!
How’s the rest of you??
Hugs to anyone feeling rough
xx
Hi
Carol my husband seems to pick up my side effects and i often say he is getting a slight dose being with me. He now has to take a glass of water to bed too, for his dry mouth!! Or is it a man thing wanting any food or drink going???Hmmm.
I plan to go back to work at the end of Jan but still waiting for details from the school. I lurch between being really excited to see all the kids and my friends and being terrified I will cry or lose the plot with my chemo brain. I can’t remember any door codes, time, etc so will feel like a new person again for a while. I have been told I am likely to be supporting classes to settle me in, so terminal boredom may be the worst thing to put up with!!! Such mixed feelings, how about you?
I am not very ‘P’ either at present. Felt a bit like I forgot to renew an insurance policy when chemo and rads stopped. Everyone else gets so excited at the end of each part but it does feel really odd after being treated for so long. I know just how you feel, thinking that you have been through all that and have 6 left still. People on FEC finish so quickly in comparison, it can get to you a bit at times, as you feel yours is going on forever in comparison. From the start of the next one you should feel like it is moving on though, I hope so.
I am nursing a really annoying rads burn. They turn up where the boob touches the chest in a semi circle. Mine has decided to blister and peel so have had to ask advice from the hospital and now it has a dressing on it and feels much better. It started on day 16 and I had 15 rads!! You keep cooking like a microwave for another 7 - 10 days after it stops. As it is a 50 mile drive there and back I have to describe it over the phone. The process itself is a doddle and no pain. Just the luck of the draw with the burn it seems.
Hormone tablets are going really well and no hot flushes at all so far, fingers crossed.
Keep chugging everyone, the tortoise won the race
Lily x