Hi Kelyn!

Hi Kelyn!

Hi Kelyn! Hi Kelyn,

just seen your reply to hazel and rather than hijack her post I thought I’d start another to see how you’re doing. I couldn’t remember whether its 1 or 2 CMF you’ve had so far (you’re gonna tell me its 3 now!), but was wondering how you are feeling. I have 1 more epi on weds then start CMF on 11th July. I have felt really really tired this time round, although I am feeling much more ‘normal’ now (just in time for round 4, typical!!), does the CMF make you feel as tired for as long as epi does?

I’ve prob asked you this before but as you know I’m starting to stress about the changeover!! I’m just hoping my veins hold out for my last epi on weds as they’ve been quite sore. I’ve been putting some cream on them that the hosp gaveme and just hope they can hang on!

Anyhoo, enough about me, how you doing?

Kelly
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Hiya Kelly,

I stressed out about changing over as I went through EPI’s reasonable good and thought that I would then have a disaster with the CMF’s.

I’m not that much in front of you. I’ve had the first cycle of CMF, both doses and due to start the second cycle of CMF 4th July.

Having the drugs is not nice as I feel like I have a horrible hangover - although this doesn’t last long. side effects have been better that EPI - very little sickness and because of this on the second dose of the 1st cycle I even cut my steroids in half to avoid so much wait gain. I had more sickness (only feeling sick) but easily managed with the low dose antisickness tablets they give. Still knackered but so far not as much as the EPI’s. funny thing was that I was shopping on saturday and feeling great then suddenly I felt very light headed and sickish and for a few moments I had to think what was causing it then realised ‘oh its the chemo’ so it shows that I’m having a ‘good’ time with chemo.

The bad news… I was told that CMF was much better for the veins as like you my arm hurts like S**T and was told that this one wouldn’t effect the veins - DONT LISTEN TO THEM my vein hurts just as much after CMF. This can easily (in my mind) be avoided by running more saline solution through the vein to ‘wash it out’ afterwards as there was hardly any solution left after the CMF had gone through so next time I’m going to insisit (well at least try!!!) on having more saline to wash it out as my arm pain is really getting to me.

Sorry if I’ve waffled - good luck on the last epi

Thanks Hi Kelyn,

glad to hear you are doing ok on the CMF so far. My first is due on Weds 11th July, oh my god!!! Am a little worried about it going in as you’re one of many who have told me you can feel a little ‘odd’ when its going in. I’m such a baby and am hoping and praying I don’t start freaking out or anything!!

I will defo keep an eye on how much saline they run through afterwards, my veins can not keep taking such a battering! So far I have had no actual sickness with the epi, although the more I’ve had the more nauseous I have felt and for longer too. This time round I’ve taken the ‘domperidone’ additional anti-sickness meds loads and I’ve not had to previously. Its reassuring to hear that you’ve found the sickness much better on the CMF. Hope I fare the same!!

Good luck for your next round of CMF. Hope your veins are treated more gently! I shall let you know how my final epi goes on weds,

Take care,

Kelly
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Hi Kelly,

I found that the way for me to be ‘good’ with Epi was to take everything they threw at me so I took all the domperidone as a precaution and found that I then had very little feeling of sickness, when i had used up them I then took the other milder ones for a few days.

Are you aware that they don’t give you any domperidone with the CMF, when I first found out I was horrified as I thought they were a must but I can honestly say they were right and they are not needed. They also don’t give you a supply of steroids to take before you have the CMF (i was taking 4 steroids before each EPI) I didn’t fancy going totally cold turkey so I do take 2 steroids an hour before I have CMF - I’ve told the chemo nurse what I do and she has said she would do the same if she was in my shoes.

The lightheaded /hangover feeling when the CMF goes through isn’t that bad. I just shut my eyes for 5 minutes and relax and it does tend to go away as fast as it came on.

Oh another thing I’ve just remembered… My hot flushes have started with the CMF. They are a pain in the a*** but don’t seem to be that bad just very annoying so I dont know if I’m having a milder version of what I’ve heard with everyone else or perhaps they 'll get stronger over time

Wont be tooooo long and then we can start comapring rads then we’ve almost reached the light at the end of our tunnels

Domperidone Hiya,

I have never been given any steroids to take pre epi, it seems they do things slightly differently wherever you go! I was chatting to the chemo day unit sister last time I had my epi about the CMF, and she said I would be given exactly the same anti-sickness meds, inc domperidone, when I change over. I’ve also been told I’ll be given something to take every 6 hrs for the first few days after to try and keep mouth ulcers at bay. Have you had this?

Along with your additional steroids you were taking beforehand did you also get the steroids infused about 15 mins before they started the epi? Thats what I have been having and that, along with whatever they give me at end, seems to be doing the job (fingers crossed!).

I think you tipped me off about hot flushes the other day as I went out and bought a tower fan in anticipation! I’m thinking of getting one of those chillow pillows too, but think I’ll suck it and see for now. I’ll defo follow your lead and shut my eyes and chill whilst the CMF is going in. Will be relieved once I get the first one over with I think!

Woohooooo to comparing rads, I soooo can not wait for that day! Don’t want to wish our lives away but can’t wait for chemo to finish!

Kelly
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Hi Kelly,

It does soundas if they do things different down here. It was only the very first EPI that they put steroids and anti sickness stuff in the drip. after that I was always given steroids for approx 4 /5 days plus another 4 tablets to be taken 1 to 2 hours before next chemo. also given extra domperidone - 2 of them to be taken 1 to 2 hours before - all of this has stopped on the CMF as they say you don’t need it.

I must say that I feel a lot better without the domperidone as they made me soooo constipated.

I don’t need a chillow pillow as yet - so your decision of suck it and see seems the right one.

Must say - today I feel almost normal - been out bought loads of stuff and feel great

Epi finished, hurrah!!! Hiya,

well, I had my final epi today and it feels great!!! They had an absolute mare trying to find a vein, just as I had feared! Anyway, they ended up putting it in a vein just below my thumb which was a bit bizarre and not the most comfortable of experiences when the cannula was going in! Its the 3rd time on the trot that my right hand has been hit, my left hand ought to feel ashamed of itself!!!

So, I’ll soon be moving on to the next stage like you. I’m a big girl now! First CMF 2 weeks today. I’m nervous as you know but hopefully it’ll be ok.

Hope you’re ok,

Kelly
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Hi Kelyn,

how did it go today?? Are you feeling ok?

Kelly
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