Worried about side effects from CMF

Has anyone got any tips or advice about CMF and the side effects please,due to have mine on the 15th Aug.

I had CMF after Epi last year and found the side effects a bit worse than the Epi which was surprising as everyone said it was easier than the Epi!!!. I started with the tablet form of the C bit but was sooooo sick on them i had the next 3 by IV. I also had really sore mouth ulcers all the time. Had nose bleeds and fainted a couple of times! BUT I think I was the exception to the rule as most people find CMF quite easy compared to other chemos. AND the hospital gave me lots of medications to help with the se’s.
Hope you cope well with it and have few se’s like most people seem to

Hi Jill,thank you so much for replying.Ive been getting really worried because while at the hospital one of the lovely nurses told me i was doing really well with se’s and that with and that once i started the CMF my hair would start to grow back and the se’s were not as bad as the Epi. Next visit differant nurse,oh yes you will be fine but if the sickness is too bad you can take the tablets when your going to bed then you will sleep through it. Differant leaflets and info im getting are saying similar but also you have to avoid alcohol and you can loose your hair or it may start thinning. I havent got much hair anyway at the mo but ive booked a convalescent break and its the day after my treatment so im really worried i might have to cancel it.
Jill how was you with the Epi? i was brilliant the first two but the third was like i had been hit by a bus,pains all over my throat was so tight i had thrush in my mouth followed by a mouthfull of really painful ulcers. The fourth im just recovering from,i felt really sick and had no energy but just rested for the four days wich wasnt too bad.
Take care
Donna x

Hi Donna
I was not too bad with the Epi the first 2 I had terrible indigestion and sore throat and constipation with all 4!! But felt rough for about 5/6 days and then ok for the 2 weeks before next one. Worked all through chemo although for CMF felt worse by the 4th one seemed to get worse as it went on (sorry) I had no hair going in to CMF and it did start to grow back I had 1st EPI 15th March and hair started growing back end of July. THe CMF was a different se each time for me and I seemed to get every one in the leaflets lol. I didn’t drink alcohol with the CMF as everything tasted revolting! Although chocolate was ok! I spent the second week of each cycle only being able to suck foods as mouth was really sore with ulcers!
I hope you get to go away it was a few days before any se’s struck so hopefully you will be able to.

Hope it all goes ok for you
Jill x x x

Hi, just thought I would tell you my reponse to cmf as it was so different to Jill’s. On epi I felt that i could not move from the sofa for 3 days each time. The side effects were strong enough to stop me from going anywhere and no way could I drive in that time but it was over in 3 days. I had the worst constipation ever for a week and had to be vigilant or that became a major problem. I was never sick or even felt nauseous but took anti sickness meds as prescribed. No mouth ulcers. I had the cold cap and kept some hair but it was thin and a bald on the top. On cmf I had no days that i couldn’t go out or drive at all but felt very slightly off for longer. I had the runs on cmf, but again this does not seem a common effect. I couldn’t eat any fruit or veg for the whole time I was on it and was lactose intolerant for a few days after each dose too. But I could go out every single day, no sofa days and drove all the time. I didn’t have any mouth ulcers and felt so well that i stopped the steroids and anti sickness tablets (under guidance of the hospital)and was still fine. My hair started growing fast and i had 2 trims before it finished with a full pixie haircut. The C (cyclophosphamide) does often cause ‘swimmers nose’ and I was told that out of the 3 this was the one if any that would cause a reaction. I did get a pain in my nose that got much worse but stopped as soon as they stopped injecting it. So I was given piriton iv before it and had to have it on the slowest setting on the drip rather than hand injected, which is not as smooth. This solved the problem and meant I snored right through the longer time it toon. The M (methotrexate) is a weeny little yellow drug used by people with psoriasis and rheumatism too and my joints were really lovely while I had this and skin good too. Then F (fluorouracil) ia another big quantity like the C and was ok for me. I think it is one of the ones that gives you chemo brain and I did silly things like hitting the house when i drove home and having to stop to remember the way home. Very amusing to everyone else! There are 3 different ways of having the C. I was very worried beforehand especially about having to go on day one and back again on day 8 for more. Having bloods taken extra times was annoying but my neuts had gone up every time on the day 8 check from their day 1 level. so clearly it was not a problem too my blood counts. It seemed to me that people were much better on the e or the cmf and i wish you luck and hope that you are one of the people for whom cmf is a much easier time and the start of your new hair. love to you both. lily x

Hi Lily and Jill, thank you for replying to my post I really appreciate your feedback! I’m feeling a lot more confident about my CMF treatment.
Love Donna xx

Hi Donna
Just saw your other post re Liverpool I am on the Wirral. Are you having your treatment at Clatterbridge?

Hi Jill,no im having my treatment up at the Linda MCCarntney in the Royal Liverpool Hospital. I thaught that i would be going to Clatterbridge but as it turns out i only have to go over to Clattrbridge for a consoltation re my rads then i have to go to Aintree for all the treatments.Got to say i was so relieved i didnt have to travel so far everyday for the four weeks of treatment.
Donna x

Yes that is a relief for you Are you having your rads in the middle of chemo? I had mine with the 2nd and 3rd CMF it was great fun NOT x
Have you had your 1st CMF yet? Hope you ok if you have
Jill xxx

i had a similar experience to Jill and was told i was also an exception as most people i know found cmf easier but i did struggle with it a bit… with the epi i felt really crap for a couple of days but then felt a lot better but with the cmf i felt generally unwell the whole time… and shooting pains through my face and head while getting the infusion.

i had 5 weeks of rads after chemo.

good luck

Finding the above thread very useful as completed my epi yesterday now onto the delightful cmf well in 3 weeks
Mandy x