starting epirubicin/CMF on 18th July

[Guest user]

Hi Gill, on this thread - I just left a message for you on the one I started.

I am self employed too - as a Locum Dental Nurse. I have just said I am available at short notice only ie on the day or a couple of days later. They often phone to say someone is off today can I come in so I should get a bit that way.
I have had a really nice long term one for the last 6 months or so and it has been really hard to accept that I can't continue. It would have been so good - but there we are.

Tell them would they rather have curtain problems or the problems you have? No you can't, it seems impossible for people to understand problems that are not theirs.

We will get through this and be bigger stronger bolder people and we will rule!!!!!

In the mean time we will feel a bit queasy now and again 😞

Take care have a good weekend 🙂 Gill

[Guest user]

Hi there everyone-I am one of the cursed self-employed so will have to work whenever I can! have managed to convince myself that I will be completely fine, with a couple of days sickly after each dose...so have organised my chemo for lunchtime on Fridays. However....the one lesson I have learnt right from the beginning, is that you cannot plan for this rollercoaster as everone is different and even treatments vary.
I think I have realsied that I am a bit of a control freak and it has been hard to make myself say to people that I don't know for sure when their work will be done. Most take it OK actually, ALMOST everyone is very supportive. But I do have some clients that are rapidly getting pushed to the back of the cur due to their attitude!
I have a small soft-furnishings business and honestly, you would think that having new curtains was the most important thing on the bloody planet sometimes..
anyway...gripe over.
I feel reaaly upbeat today, the result of some very good nurses and consultants at the hosp today. What a difference it can make.
Love to all and hopes for non queezy sunshiny days
Gill

[Guest user]

Hi Mal and everybody - I was able to work full time as I am doing maternity cover at small construction co in Leam Spa and it is a doddle - no pressure, no stress and some days no work - they are the worst. I have also been very lucky with side effects as I said before. The two day weeks will take a bit of getting used to - need to do things on the days off - now where are those golf clubs and which end do I hold????

Lily - my bloods were better before 3rd than before 2nd - must be all the red wine!!

Everybody have a good weekend - let's hope the sun finds its way thru the clouds.

Keep well

LOL

Julia
XX

[Lily200]

Hi everyone,
hoping this finds you well or if not starting to improve. Yummmm I will def go with the cake remedy. Someone gave me a piece of that walnut cake with the 2 layers of buttercream today and now I am going to have to track one down to repeat the ecstasy! Nuts are good for the blood counts too so i can pretend it is doing me good. My neuts are heading south each time so I can't take it for granted that they will bw high enough to have chemo this time. They started off really good but we get such a big dose of epi on this trial, it takes its toll. Trying to do very little so my body gets on with repairs to the bone marrow instead. Lian, how are your neuts on the accelerated arm? Lots of luck for tomorrow and hope the veins are ok, watch out for phlebitis which is an infection in them. I have a port in my chest as my veins were considered crap from the start so no vein prodding for me, but I know it helps if you keep massaging the veins gently, especially in days after the treatment. You can rub arnica cream on which helps bruising. Maltomlin, it really varies according to where you live but some people pay for their anti-sickness, the lot and it is a prescription for every different tablet/rinse. I get 8 prescriptions at times! I have treatment in the same unit as a friend, she has to pay and I don't because I am on a trial. Could mount up to a lot of money so she has a pre paid prescription, about £28 every 3 months I think.
Good luck to everyone in the nuclear bunker this week
Lily x

[Guest user]

Hi All

Epi number 3 for me tomorrow!! My poor arm is feeling all bruised and poorly, so I hate to think what it will be like after tomorrow. Has anyone else had vein pain? I use my wheat pack to keep it all warm and toasty, but it only relieves it whilst it is on. Any of you have any tips for this?

On a brighter note I managed to do two laps round Bluewater the other day, my best mate shopped and I dropped 🙂 I have found that a little bit of exercise always perks me up - not the gym, just a little walk......oh and cake always helps 🙂

Lian
xxx

[Guest user]

Hi All

Well I've got my list from the 'Top Tips' thread and will be hitting the shops this week-end. I just hope I don't need most of it.

Gill - we'll have to compare notes along the way. I ordered false eyelashes online which arrived this morning but I don't know whether I'll bother. I don't think everyone's lashes depart. Perhaps we'll be lucky. Lily has explained the Tact2 trial. Basically there are 4 different treatment plans and you're allocated by computer. All 4 start with Epi for the first 4 cycles but 2 are accelerated (every 2 weeks instead of 3).

Julia - you've been working full-time? How did you cope with it? One of the reasons I went for the trial was so that I would be back at work earlier (if I was put on the accelerated programme). My boss has been really good and said that I can go in as and when I can, but I wasn't sure if I would be fit. I didn't know that you get free prescriptions on the trial.

Getting a bit twitchy about it all now. Really positive about the whole thing most of the time and then......

Really gutted that we should have been going on a big family holiday next week with kids & grandkids. They're doing their packing and I'm ordering wigs! Told them we'll make up for it next year.

Take care
Mal x

[Guest user]

Go cake on undergoing treatment, have bumped up for you.

J

[Guest user]

Hi: Just read thru this, I started epi week after Lily200 and I have been v.lucky with side effects. No hair but no sickness, sorted the constipation with All Bran and prunes (pretty vile but works). There is a recipe on here for the Go Cake have a browse and see if you can find it - understand it works. I've taken my after epi drugs religiously but made sure I had the last steroids by 3/4pm otherwise they keep you awake.

I chose not to go the trial route as I wanted to have some life between the treatments as I have been working full time until this week - now doing job share 2 days per week - five day weekends Horray!!

I have two great wigs both Raquel Welch jobbies, one from NHS and one from US website - Headcovers. Great service about 4 days delivery by Fed-Ex. If you go that route, get the best you can find and get your hairdresser to adapt to your usual style. They also do great hats, turbans, etc - just depends on what you want.

I had my 3rd epi on Tuesday, so far OK as usual but I never take it for granted. Switch to CMF after that and have meeting with Onc/Prof on 21 July where I have list of questions a mile long for him - hope is has put aside most of the morning not just 10 mins.

Keep in touch and we will all support you all we can. You will get far more information from here than the 'professionals' as we all have the bloody disease and are dealing with it in our own ways.

LOL

Julia

XX

[Lily200]

Hi,
I am on the TACT2 trial too, which is researching treatments to increase survival rates and improve quality of life while being treated. Arm 3 and 4 get tablets at home after just 4 x epi. I, like Joanne got arm 1, which means while her and I gently drive down the country road to the finish, taking 7 months. Frank goes flying past in a ferrari on the motorway, on extra injections! A computer decided our route but the upside of arm one is 2 weeks of fun in every cycle to enjoy, I think Joanne might get 3 weeks of fun, don't you? Epi/CMF is also the standard treatment for some areas so people are on it , who are not in a research trial. It is worth being on a trial just for having your own nurse and also all my prescriptions are free, whereas my friend had to pay over £30 on her first appointment as she is not on one.
I had epi 3 last week and have just shaken off the side effects. I skip out the unit fine and mine start on day 4 and have disappeared on waking on day 7, with a gradual movement in and out. No sickness so far, feel preggers so delicate, faddy eating, need heavy bland stuff, horrible mouth but no ulcers just feel like I licked the dog all night (both ends!!!!) and I get visual disturbances (but no-one else seems to get that), and I turn into a slug and velcro myself to the sofa. My family just laugh now as I cannot do anything for those days just let my body go with the flow and sleep when I want to and eat when I want to. So nothing scary, annoying, totally energy zapping but do-able. On the first one I slept for almost 24 hours on 2 days. It was great the time zoomed by. You will react differently and I hope you will all sail through this really well. Drink loads and eat fruit, the constipation on this can seriously get you.
Thinking of you. Just shout as and when things happen and someone will post a cure
Lily x

[Guest user]

I must have missed something...what are the ice lollies for?
I have stocked up on ginger biscuits, peppermint teat (yuk but good for digestion problems apparently) and pineapple pieces.
Going to drink lots of water and keep those fighting cells plump!
Had constipation from hell whilst getting op so really want to avoid that again.
Good Luck
Gillian

[Guest user]

I have put on my calendar for next wednesday 'KILL THE B*****D 1' and the next appt will be 'KILL THE B*****D 2' and so on till all the epis and cmf then rads are done. Then let the evil c come back GRRRRRRRRRRRRRRR bring it on!!!!!!!!!!!!!!!!!!!!

Do you think I'm up for the fight! Yup

Made me ice lollies, going to asda to get sorbet and some more magos to make smoothies. Now what else can you suggest.

God no more constipation PLEASE.

Love to all and we can hang in there togther

B

xxx

[Guest user]

Hi there Mal,
what is the Tact2 trial?
I didn't realise there were any online wigmongers, I will go and have a look later.
Let's hope we do as well as Lian and Joanne!
Off to search for an Amy Winehouse...
Gill

[Guest user]

Hi there Gillian I start with Epi on 18th too.

I'm also taking part in Tact 2 trial but don't yet know which arm. Have been dreading it but Lian and Joanne seem to be coping OK, just hope it's the same for us.

Ordered a wig online today but will wait and see what it looks like. Looked at eyebrows but don't want to end up looking like Denis Healey. Will probably just use eyebrow pencil.

Mal x

[Guest user]

Hi Gillian

I am on the same treatment 4x Epi & 4x CMF. I am having my 3rd Epi on Friday and so far so good. I am on the accelerated Tact 2 arm 2 trial, so whizzing through the Epi's. I have had limited side effects, so feel quiet lucky. No sickness, but quiet tired. Have a 1 year old little boy who wears me out!! But adorable. I too was really worried about hair loss, but now I am almost all bald, can't wait for it too fall out as is doing my head in malting all over the show. My mum was even plucking me like a chicken this afternoon 🙂 I was V sad when it 1st started coming out, and cried a lot, but then got over it, and am having fun with it, jumping out on other half and freaking him out with baldy head.....I am wicked! I got a few wigs to try on, courtesy of NHS, but look stupid, so am sticking to scarves and hats and who knows one day I may even go naked :)) I still have eyebrows and lashes at the mo (touch wood) but not holding my breath.

I found the wait for the 1st treatment to be my most anxious, but they gave me drugs to chill me out which helped for my next treatment. Now I am quiet excited about my next treatment on Friday coz I can't wait to get another one out the way.

Please don't worry about what other people will think about the way you look, they will just be happy you are well. I have found for me it has helped to be completely open with friends and family. I can't stop showing them my baldy head and reconstructed boob. They probably wish I'd put them away :))

Hope all goes well for you.
Love Lian xxx

[Guest user]

Thanks Joanne, I think I have 8 of each, will know for sure on Friday.
When I also get wig prescription...yuk. I am hoping I have the balls to go headressless.
Did you loose eyebrows and lashes etc? I think that would be the most difficult somehow. i feel i can cope with everything this process will through at me, it's everyone else I worry about, their reactions to the way I look.
good to know you are coping so well..best of luck with the rest.
Gillian

[Guest user]

Hiya

Iam on same treatment as you 4 epi and 8 cmf only had 2 epi third tomorrow but o be honest apart from losing my hair and been really tired after 2nd you wouldnt know anything was wrong I hope its as good for you as it is for me,

Joanne

[Guest user]

Well, this is a first for me! I am looking for comments from anyone about to start similar treatment or anyone who has been through it. I warn you now... I have a rather sick sense of humour!
I am coping pretty well I think so far, though a rather brusk surgeon just about sent me over the edge last week. It has been a real tonic to read through the threads of other people and to gain strength from the wonderful comments made by all the contributors. I just fancy a chum to mope with I think! Love and hugs to all.