Started my fight against cancer with an MX ( no recon) and ran a thread following my progress. With that behind me now and chemo shortly to commence I thought I would do a new thread following my chemo journey to try and take away fear of the unknown for those who will be facing this type of treatment.
There’s a slight disclaimer though. I’m having treatment as a private patient ( thank you Mr Employer) so whilst the chemo drugs will be the same as for NHS patients but I’m guessing there might be better access to more expensive anti-sickness meds etc. & definitely Molly coddling as the hospital is small. I should also point put that this is my second experience of chemo as I had it for my first DX back in 2006. The drug regime is different this time though. Still undecided whether it’s better or worse facing it second time around! Anyway better start my thread.
Went to see my BCN today to chat about me starting chemo. She warned me that the ‘T’ part of my treatment ( second half) may result in me losing nails because they become sensitive to UV light. Apparently to try & avoid this one of the best ways is to wear very dark nail varnish. She gave me vouchers ( provided by the local support group) for manicures to have the dark polish applied. Apparently she will even come to the hospital and do the manicure whilst I’m having the drip administered ‘T’ (takes about an hour to be administers). Sounds good to me although not sure I can go for black & will probably plump for a dark maroon…but having said that, dark painted nails far better than no nails!
Got to make a decision about veins. I’m conscious that my poor right arm has already suffered from one chemo regime. With lymphoedema in my left arm I could do with preserving my right arm for future non chemo things such as blood tests etc so I enquired about alternatives. The hospital favours a porta- cath which sits just under the skin and links into a major vein near the heart. Drugs can be given and blood taken from this port so I reckon this sounds a good option. I’m quite happy for them just to sedate me & put one in ( as opposed to knocking me out). I need to let them know my decision Monday when I see my Oncologist to confirm I’m doing chemo & sign the consent forms ( i blubbed when I saw him last & he wouldn’t let me consent whilst upset). The small op would be done Thursday ready for the first chemo…Monday 20th Feb.
I also went up to meet the chemo team ( two nurses). The one on charge is the same as I had last time & she gave me a big hug. She was the one talking to me about the port & I’m pretty certain I’ll still be saying yes come Monday. She talked about the treatment cycles ( all are on a 3 week cycle) & gave me some bedtime reading about the drugs ( not read it yet) and some bumpf about the port. She said lots of different types of anti sickness meds. Hopefully I’ll get through this ok again (wasn’t sick once last time) and we giggled about the ‘ants in the pants’ injection before the chemo ( you get a reaction in your bottom area when this is administered).
So… countdown begins, hoping my body copes in a similar way to last time ( no sickness) but a bit nervous about the nail losing body aching ‘T’ that I’ve not had before. Deep breath, no need to worry about that one yet, for the FEC to get through first!
Hey twinkly
I’ve read lots of your posts and applaud how upbeat you usually are. I’m presuming the T you refer to is taxotere or docetaxel? I’ve just had T and Avastin + FEC. I wish somebody had warned me about polishing my nails. Mine look like they belong to a corpse or a clumsy blacksmith!!!
Whilst I’ve been nauseas on this I’ve never actually been sick, but the other side effects were a shock. Just be prepared for the usual. I don’t want to be doom and gloom but I felt like I’d been hit by a truck! I had an anaphylactic reaction to the T on the 3rd time of it being given, seems they pushed it through too quickly so don’t let that happen! A porta cath sounds fabulous - no more painful protesting veins!!
I’m sending you a big hug and lots of good wishes and positive vibes. Xxx
Good luck xxx
Love Sharon x
From my experience of FEC I would recommend the portacath - I had a picc line fitted for no3, definitely invaluable but a bit of a pfaff. From what I’ve heard the ports are the next model up & you are less tied to having it flushed every week. I am dreading my next blood test now I’ve had my picc out!
I also sucked ice lollies whilst FEC was being given - I rarely lost my taste (poss a handful of days in the whole 6 cycles) and very little in the way of mouth ulcers.
Just completed my 2nd course of chemo after having epi-cmf in 2009… This time around I have had 6x carboplatin and taxotere (T)… I did wear dark nailpolish on fingers and toes… Finger nails started falling off the day before chemo 5… They aren’t gone completely and look i have an extremely bad nailing habit as they are all about half the size they used to be and the tops broke off first and the bits that are still attached have 5 soon to be 6 ridges from when I had my chemo… My toenails are totally intact although fingers and toes are all a bit tender at the tips and the nail beds… Very difficult getting tablets out packets!
Dont mean to scare you but I also had a bad reaction to tax… It started after 5mls of the first infusion was administered and I turned bright red and was having hallucinations of silver glitter floating down the walls… It was delayed for a while as i was given piriton and hydrocortisone infusions and he restarted and given more slowly over about 2-3 hours instead of an hour. Just meant I was in the hosp for about 6 1/2 - 7 1/2 hours but my last one on Thursday was only in for 5 hours!
The side effects usually kick in 3 days after chemo… Seems to be similar for most people… I have a very painful mouth for about a week and have all sorts of potions and tablets to help… It’s not gotten worse but not any better either but they don’t want me to stop them incase it does get worse.
Portacaths are relatively new and tend to be more common in the private sector than the nhs… My veins are knackered from my original chemo so after my second lot of tax&carbo I got a Hickman line inserted which has been great.
Hi Sharon Annie & Lulu. Thanks for your posts. Looks like the ‘T’ (doxithingy…lol must read the literature) will be an ‘interesting’ ride! I’ll just keep my head down & focus on the FEC. Thanks for the tip about ice lollies…will stock up on those and take one in a lunchbox with a freezer block to suck whilst the FEC is administered.
The things we go through fighting this disease! I am lucky though having private healthcare as the personal touch & seeing the same surgeon/BCN/Onc is great for continuity & they get to know you so it’s more obvious if things are going wrong. I’m also kept well informed which is nice too. It all helps & the chemo nurse confirmed breakfast & drinks are still served ( bacon butties yum) whilst we wait for the treatment.
I had 3 FEC followed by 3 Docetaxel and had a portacath fitted as I am herceptin for a year - FEC made my veins pack up so wish we were fitted with them as a matter of course. My portacath has been fitted on the NHS, but it can not always be used if you have to have CT scans, MUGA scans or MRI scans.I found FEC made me ‘spaced-out’ and headachey, and was only sick once on the 1st 2 doses, but much preferred FEC to the ‘Dreaded Docetaxel’ which I describe as the having a ‘sting in its tail’. No problems for the 1st couple of days after having it but as soon as the steroid wore off, boy - did I know it. I felt as if I had doubled in age overnight and my feet were killing me. I swear that everytime I went upstairs there were more stairs than the time before! The neuropathy in my feet and hands has now gone, but it did linger on for a couple of weeks, and the fluid retention caused by the steroids did too.
Even my eyelashes and eyebrows decided that they had had enough once I went on to Docetaxel and after staying with me faithfully through FEC they then abandoned ship! Be warned! At least on FEC I could wear eyemake-up but putting mascara on one solitary eyelash is NOT a good look!!
I had my last docetaxel at the end of September and my eyebrows and eyelashes are coming through now and thickening up. I have been lucky and haven’t lost any finger or toenails, but they still look discoloured even now so do use nail strengthener on them and continue with it even after you have finished your chemo as the effect takes a long time to grow out. Try and keep your fingernails short too. Strangely, the full impact on my fingernails only made itself apparent a couple of months after my last docetaxel too.
I also found that for the first few weeks after finishing docetaxel my eyes would water uncontrollably so wearing sunglasses whilst outdoors helped to some extent so be prepared for walking down the street seemingly crying your eyes out which then causes your nose to run so that you end up sniffing away like a snotty-nosed kid!
On the bright side though all these side-effects do go away - some sooner than others and one day you will look in the mirror and see that old you looking back once more. I haven’t quite got there yet, but the hair is sprouting - a sure sign that spring is on its way!!!
Just been to see my Onc today to sign all the consent forms. He took one look at the coughing wreck in his room and wrote me a prescription for anti- biotics. Chemo is delayed a week whilst I get myself well again so a start date of 27th Feb now pencilled in. Just realised this means my second cycle won’t start on my birthday but a week later so that’s good. Between now & 27th Feb need to have an echocardiogram to check my heart is ok (as it’s already done chemo before) plus have my portacath fitted. Am hoping they leave me alone this week. I just need to rest & get well. When it starts I will be having 3 x FEC then 3 x Docetaxol. …can’t wait …not! The sooner I start though the sooner I finish. At least I will enjoy Xmas this year.
Hi guys
Just wondering if I can ask a question actually (Lulu, perhaps one for you?). I’ve just finished my last FEC but I’ve got pain in the back of both hands (site of cannula) and all the way up my arms to my elbow, particularly sore over the wrists. I’m presuming this is my veins?? Am I right and will this have any longstanding problems in the future or be problematic for forthcoming surgery? I’m not due to see surgeon until 24th then onc on 27th.
Is there anything I can do to make it better?? I have to admit I stopped taking the steroids before I should have done after last FEC, just sick of taking pills and injections (the thought makes me nauseous), would stopping steroids have anything to do with this pain??
Cheers
Hi Kiwi,
Hope you don’t mind me nipping in respond… it is just I had the same thing when I had FEC. The Epirubicin (the E, the red stuff) is very hard on veins and can cause damage, as you say, at the cannula site and on up the arm. I had it in both arms too as being neo-adjuvant I had two usable arms. The first time I had it checked by GP who confirmed it wasn’t infected, so just to take painkillers if it was too bad. My onc told me to try to stretch outthe affected arm/s gently to straighten out the vein and stop it shrinking. Within a few weeks both arms were absolutely fine. I have seen threads where people say they used things like wheat bags you heat in the microwave on their sore veins to ease the soreness.
Once I switched onto T (Docetaxel/Taxotere) no more vein pain arose as it doesn’t do what the Epirubicin does.
Hope your arms are better soon, vein pain is rubbish.
PS, nothing to do with taking your steroids or not.
Sharon,
I have had 3 FEC and have had same problems with wrists - both, even though I had mx first and so can only use other side for chemo and blood tests. I’ve always taken all my steroids so you can stop blaming yourself about that. I take it that it’s just an SE they don’t mention. I also have miserable pain in one ankle that makes walking difficult at times.
The pain up the arm is from poor battered veins. My ONC told me to massage it gently in the bath and also gave mr analgesic rub to use. The one vein that has been used for two out of three FEC looks like a lost cause to me. At
least if you’re having chemo before surgery you’ve got two arms to use. It’s only after lymph node removal that you can’t use your surgery arm.
Let’s live in hope that the aches and pains disappear after chemo ends.
All the best,
Kathleen
My hand and wrist are also really sore. I can track the pain up to my elbow and strangly I also have soreness in the other hand which can’t be used as I’ve had lymph node removal. I have noticed that when its cold I really feel it extra sore. I still have 1 more FEC to go before switching to TAX so hoping I have a vein left for it.
Hey everyone, just a great big congratulations for keeping on with your chemo- I guess I never felt I had much choice but I just wanted to say its a huge achievement and we could all do with a pat on the back for that I think. On the T front - the nusre watched me like a hawk for the first few minutes of the T infusion but I was fine apart from a very hot flush so she slowed the drip down…in the end T was an easier ride for me that FEC. However watch out for tingling in hands or feet - do mention it if you get it cos I had my last dose reduced due to it …it can last a while if not paid attention to. very best of luck, Nicola
Just off to the hospital to have an echocardiogram to make sure my heart is ok prior to starting chemo. Portacath op is next Tues & first chemo the day after…can’t wait…Not!
Lulu i noticed you said that you had E-CMF in 2009,how did you find it as that is what i am having,only had 1 so far juicing #2 is tmw…any tips??
Emma xx
I had E-CMF in 2006. I did ok. Managing to keep drinking is the key to coping with the ‘E’ but it knocks your taste buds out & water ends up not tasting so good. I remember experimenting with lots of fizzy drinks! I found the CMF bit easier than the E & my hair started growing back during the second regime.
thanks for that Twinky,yeah i found my taste buds have gone awol!!thats promising abou hair growing back during CMF,i guess its not a guarantee for everyone but here’s hoping
xxx
I had funny taste on Epi too, but liked fizzy juice as it took that scuzzy layer off my tongue and gums… I got sore veins from infusion, didn’t get sick but did have some nausea, hair fell oout on day 17, felt very tired and chemo brained… Loss of concentration, poor short term memory, forgetfulness… Itchy, dry skin… Dry gritty eyes… I felt really crap for the first week and then I felt better on my next week.
I found the CMF was worse… I had major pain when i was getting the cyclophosphamide… Was shooting pains in my face, around my nose, eyes and forehead… This is a pretty rare side effect though most people just get a tickly nose… And I couldnt eat curry on the CMF which I could on Epi as my mouth was more tender and got ulcers.
I like the feeling of feeling better which I got from the epi… I know I felt really rubbish but then felt good again whereas with the CMF I just felt a bit naff all the way through… Not awful and not good… Some people prefer the CMF cos they don’t like the awful bit you get from epi.
There used to be an EpiCMF thread but you could start another one as I’m sure there are probably more than you getting it and it’s good to compare notes.
I think I pretty much sailed through it but my family tell me I must be looking through my rose tinted spectacles… And maybe it was quite as easy as I remember as I didn’t work though it, but it was manageable but just not very nice.