Hi
great to have some more TACters to talk to. You know I really thought I had drawn the short straw at first getting arm one and wondered whether to pull out but I think this one really suits me. It knocks the stuffing out of me but luckily no sickness at all and 2 good weeks in every cycle to enjoy. The extra bonus is no injections, hopefully. Not sure how I can get through all this lot and still worry about an injection though. I had epi 2 last week so now bouncing about and enjoying feeling better. My side effects were less for dose 2 but I was really emotional with it. My worst side effects are the slimey mouth and terrible acid in the stomach.
I am really interested in how the CMF goes though and would love to keep in touch about your progress. This week when I got to Monday and thought soon you’ll be going back in again tomorrow, I started to panic. Told my husband he would be carrying me out the door to get me there. I just cannot imagine being able to put one foot infront of the other and go. Does something happen to make you feel better about it? The cyclophosphamide is the worst sick drug isn’t it? I think I will need to store up alternative anti sick drugs for that because my current ones work but still feel something through it, just don’t actually puke.
Joanne any news, you ok?
When are your next doses. Mine is 1st July which entitles me to a second dose in July too, buy one get one free, Fab!!!
Hugs
Lily x
Hi Lily,
Yesterday was my first cmf and was told that I think its the 'c’part (can’t be bothered to spell its long name) can make you feel dizzy and woozy if it goes in too quickly. I’m really scared when chemo starts messing with my head so they wrote on my notes to give it slowly. When the dizziness started I asked for it to be stopped for a minute until it passed. They were brilliant with me and it wasn’t too bad. I think a new chemo is always a bit scary the first time cos no-one knows how your body is going to react. So far I feel ok…no need to take steroids on this one and have been advised to take the milder nausea tablets first for a couple of days and keep the stronger ones for if and whn I need them so constipation should be less of a problem.
I’m still slightly anxious about going back next week cos when I was on epi there was no way I could have gone back after 1 week. but I’ll just keep my fingers crossed that it goes ok. At least I feel I’m over half way there now .
Good to talk
Best wishes
Trish.
Hi Trish, that’s interesting, I wasn’t aware that the ‘C’ of CMF made you dizzy - no-one explained that to me. I am taking it in tablet form but I have found that, although the nausea was worse on the epi, the nausea is more frequent on the CMF - and I feel lightheaded frequently too. Its a relief to know that it is probably due to the cyclophosphamide (a lesson in spelling for me - I have no idea whether I have spelt it correctly or whether I pronounce it correctly either - but who cares, I tried!).
Have you also been given Calcium Folinate to take 24 hours after the IV injection - I’ve been told that the methotrexate can be too effective - as I understand it, the Calcium Folinate is supposed to prevent your WBC falling too low.
All the best
Naz
Hi Naz,
no one mentioned anything about methotrexate to me nor have I been given Calcium Folinate. will ask next week. I wonder if they tell us about side effects more relevent to our situation. They know now that anything that messes with my head causes me to freak out a bit snd i know from following your posts that you had chem delays due to low neutrophils.
Hope cmf goes better for you
Trish
Thanks, Trish, yes, you’re right - the treatment is so unique to each one of us that they probably only advise us of side effects that they think might be pertinent to us - it just shocked me to be feeling a little dizzy, and not know why. I put it down to the drugs but, as always, my mind went into overdrive and I began imagining all sorts of other things too.
Yes, lets hope that the CMF is easier for both of us. Roll on September when at least the chemo should be finished. Are you still living with your family, rather than at home? I hope it is still working out for you all.
All the best
Naz
Read my earlier massage about sucking lollie for your mouth there excellent to stop bad taste in moiuth
Joanne
Hi
well you both made me feel a little easier about the doses. I know you can take the CFM in different ways, I will have all 3 via my port and no tablets. I have a dose on week one another on week 2 and then 2 weeks with nothing, is yours the same? Why don’t we have steroids on that part?
Lily x
Hi
I am really interested to know how anyone is getting on with the trial. I am just about to go in for epi dose 3 on Tuesday and read from some people that this one knocked them for six. I found dose 2 much easier physically than dose one but I was much more emotional.
How are you girls on CFM going, I am trying to prepare myself for it just in case. I am assuming we get a lot more symptoms because there are 3 different drugs. I have not been sick at all on epi so far (touch wood, fingers crossed) . Time flies by and I am really boosted by knowing that I will be half way through at the end of JUly if all goes to plan. Never thought I would manage it when I was first told I needed chemo. Did you see the onc between the drug changes?
Lily x
Hi Lily,
I’ve just completed first cycle of cmf (day1 and day 8) So far I’m finding it easier than epi which for me was fairly rough…two infections, antibiotics and the ‘steam roller effect’ which lasted a long time. I was told I wouldn’t need steroids and to take the milder anti- sickness tablets (domperimide) and save the ondansetron for if and when I needed it. I felt great after day 1 cmf …couldn’t believe what it felt like to feel ‘well’ again. Bit more nauseus than when I was on epi but definitely more energy and less fatigue. Had day 8 last Weds and still feeling not too bad,more tired but nice tired and not the dreaded fatigue tired if that makes sense. Next time I go I will be 3/4 through chemo…
I was told the ‘c’ part of cmf can make you feel light headed if it goes in too quickly so I asked for it to be given more slowly and so far I’m finding less side effects. I never get to see onc only nurse clinician who is great and answers all my questions.
I think you get more tired as it all goes on something to do with the cumulative effect. Good news is that hair starts growing back on cmf…have looked in mirror everyday but no signs yet…I live in hope
Hope this helps
Trish
Hi Trish,
I am so glad to hear you feel better although I have not had similar symptoms with epi so far. Hope I have not jinxed myself for number 3 on Tuesday! I always say I feel like a paper bag on a windy day after each dose but nausea has not really been a problem, more horrible mouth,eye disturbances but yes steamrollered for a few days. Dose 2 was much better than one, so hope it is again this time. The no steroids is good too. I am surprised that you use the weaker anti-sickness tablets, will you move to the ondansetron next time to see if you get less nausea? I just take the strong ones on epi for 3 days and then have not taken any but have ‘the champagne ones’ just in case. I di have to use ranitidine for stomach acid though quite a lot. How brilliant to be coming up to 3/4 through, seems a long way off. I am really jealous!
Keep me posted and hope you stay well. This was a great help
Lily x
hya everyone i too am going to sign up for the tact 2 going to see my oncologist on 11th to discuss it i was told that i shouldnt go to work as i work with customers i am more prone to infections and it would not be wise to so having about 6-7 months off when chemo start dont know if i will enjoy the time off though it all sounds horrible what you are all going through.
Lily… The symptoms of my 3rd epi were slightly easier than the previous two, I hope that’s a comfort to you.
Trish…Thanks for letting us know some of what happens with the CMF, it can be quite scarey not knowing what to expect. I can’t wait to begin this part of the treatment because it will mean I’m half way through.
Jackie…Good luck with the treatment, don’t read too much about other peoples symptoms, everyone is different and with a bit of luck you may not have many. In a three week cycle you will have some time where you feel ok it’s not all bad. I try to make the most of the good days and do things I enjoy.
Take care everyone,
Liz x
Hi Lliy200
I’m on the same as you although think your 2 days ahead of me. Read some of your symptoms ie-; sickness I have been lucky i havent had any at all in fact this time Ive had no side effects what so ever apart from being tired but even thats managable. The mouth part I dont know if you read my thread on mouth ulcers I sucked on ice during my chemo and my mouth hasnt been affected what so ever this time so i will continue doing it with every chemo. That was the worse part for me on epi 1 not being able to eat so thankfully with the help of orange ices it has stopped.
Joanne
Hi,
epi 3 has come in much quicker so feeling yuk and weedy, but not sick. My usual symptoms of labrador mouth (feel like I have been licking one all night and get a white tongue) and focus in eyes has gone as usual by the end of the day. Hope this means it passes quicker as hate this stage, trying not to drive at all as cannot see too well. Felt unwell on the day of my dose and really shivered with the cold cao, but sneezing after so prob just bad timing. No cold came out so maybe the epi zonked it! I asked about CMF and was told I will start supplements 24 hours before my first dose to counteract the effect the methotrexate has. Sounds quite worrying but it is the drug to treat lymph node cancer specifically, so must be a good one to have on board.
Jackie62 the best part of being on a trial is that you get your own research nurse to look after you and they are brilliant, plus extra checks over the years. Let us know which arm of the trial you get, this is the long one but you do get 2 week of fun in every cycle and it really isn’t too hard to get used to being off work in the well bit, if you can sort the finance problems it causes out.
Hugs to all of you
Lily x
Hi lily
We meet again
I was reading your post and as I’m on same treatment as ou I was doing bit of research into methotrexate.
Thought I would send you this
Methotrexate is similar to a normal body molecule called folinic acid, but has a slightly different structure. So it stops some cells working properly. Anti-metabolites often stop cells making and repairing DNA. Cancer cells need to make and repair DNA to grow and multiply.
Methotrexate also stops some normal cells working properly, causing side effects. You may have folinic acid 24 hours after you have had methotrexate. It helps the normal cells recover and helps stop side effects
Maybe that explain the extra drugs.
Apparently the side effect aren’t as bad with Epi.
Fingers crossed
Joanne
hi, ladies I havent posted much but found this site to be invaluable for info and all the support given.
I am on the trial and have just had the first two rounds of the cmf and just want to say that I have found it does get better. Was very nervous last week with the first one but it has been fine. It takes longer to go in as its two iv bags and one is two small syringes. I was lucky with the epi with no sickness and have not had any with this either.
I cant find where it was mentioned about not taking the steriods with the cmf - it takes so long to read through all the threads - but I thought I wouldnt take the second lot and thank goodness have not had the red face the next day so it is worth asking if you need them. And it gets better - the taste in the mouth is no where nearly as bad, at least it hasn’t been. I have found I am drinking more.
Good luck with the rest of your treatments
Lynda x
Hi
thank you both for that info, I am getting a little anxious about changing treatments as you get used to the devil you know, so to speak. If I stop having the extra hours with the cold cap, it will not be so long in the unit I guess. I was initially told 6 syringes for the second part, no-one mentioned a drip, although they flow more steadily and are usually easier, so will have to wait and see what they do. I know the trial sheet shows a number of different ways to administer CMF and some people have the C in tablets, which would not be my choice as I struggle with them at the best of times. I just cannot imagine going back in again next week, having just had epi 3 on Tuesday. Actually feeling better more quickly so far but not taking any chances in case it starts soon. I would love to get rid of the labrador taste, really bugging me today.
Lets all hope for a much better home run. Thanks for all that
Lily x
Hi Lily,
I had cmf using 3 syringes …2 colourless larger syringes ( c and f )and 1 very tiny yellow syringe . ( m )
I know what you mean about being anxious about changing chemo…I felt exactly the same.
I’m still finding cmf easier than epi but then I had a real rough time on epi so I suppose its only easier by comparison.
The dat 8 one has hit me a bit harder than Day 1 but at least there;s a good length of time to recover.
I’m just getting a bit sick of it all really as it seems to be one of the longer regimens. 28 weeks seems like an eternity
Trish
Hi
Trish I started another thread about stopping treatment early as I was feeling over whelmed at the time. Just thought I would bounce the idea around with the lovely ladies here and they were very much in favour of sticking with it. My standard treatment would have been 6 x FEC, all over in 18 weeks. So going 28 weeks and 12 doses in total seems really heavy. Are you in the same situation? I am confused that others have drips for the same treatment, not sure why that is at all. I have put on so much weight I will probably need all of the above!!!
Still you must be well over half way. Did you see the onc before you changed treatments to CMF? I am supposed to see mine after epi 4 on 22 July so will hope to get more info out of him then. This is a real tough decision to make isn’t it?
Hope you are feeling brighter. I am just coming out of the epi bubble that wraps round my head each time but no energy yet. Hard to think when you are having chemo about such potentially life changing things.
Hugs
Lily x
glad i found this site.i am having a central line put in tomorrow ready for starting chemo,arm one, on wednesday.its good to see that other people are going through the same.i did go on the tact 2 trial,i wasn’t bothered that i got arm one,i am just a bit apprehensive now that the treatment is imminent!.