I am about to start on the TACT2 trial in one hour! Just found out I have been picked for Arm 1 which is the standard one, but gutted as was hoping for shorter one. Would have been on 8 x FEC so this one is now longer at 28 weeks rather than 24weeks. Is anyone else on this one? From what I have been told it is one other hospitals have used in the past so its nothing new.
Wanted to do the trail as think it is so important but all a bit scary. I know everyone reacts differently so I guess its just wait and see!!!
Any commments would be great.or any tips on Chemo in general
I’m so sorry its taken ages to respond to you, I haven’t been able to log on for a few days! I started chemo in May, but am on arm 2 of the TACT 2 trial. So, mine is exactly the same as yours, except my Epi was every 2 weeks rather than 3. That said it only makes my treatment 1 month shorter than yours, so not much difference really. Personally when I signed up for the trial I only wanted to be on arm1 or 2 so was well pleased. Wasn’t too keen on the idea of switching to tabs.
Well, I hope your first Epi went really well. You are now an official member of the ‘chemo caners’ and ‘red wee’ clubs!!! Hurrahh!!! I think you will be amazed at how quickly the time goes. I had my 3rd day 1 CMF yesterday, and since starting Epi in May I honestly don’t know where the time has gone. After my day 8 CMF I have a 3 week break, and thought I would struggle with this as it is obviously longer than the usual 2 week break I had been used to on the acc Epi. However, I must say that the time between treatments goes just as quick! I couldn’t believe I was back at the chemo day centre again yesterday, it felt like I hadn’t been away!!
Top tips for chemo:
Be sure to take your second dose of steriods (dex) no later than 2pm. If you do you may have trouble sleeping as they can cause insomnia. I always make an effort to have brekkie and lunch early to allow for this.
Travel bands (£7 from Boots) are awesome for nausea. They are drug free and you can wear them all day and night if you wish.
Dex can cause constipation, starting the day with a fruit smoothie and a high fibre cereal such as all-bran has kept this at bay for me!
Ginger (in any form, biscuits/ale/crystalised etc) is also great for nausea.
Drinks loads of water or squash, as much as you can handle! Helps lessen the effects of the Epi as it will flush it through quicker.
Invest in an ultra-soft bristle toothbrush, helps prevent sore bleeding gums. Colgate do a great one for adults.
Alcohol-free mouthwash such as Dentyl is great for when you switch to CMF as it helps prevent mouth sores.
Invest in a baby’s brush. My hair fell out 2 days after Epi No2 and prior to this my scalp was really really sore. Using a soft baby’s brush was essential during this time. I got a lovely pink Denman one. pricey but worth every penny.
Lucozade!!! Personally I couldn’t live without it the first few days after treatment!!
I hope that helps a little. Also, check out a great american site called www.headcovers.com. They do all manner of great things and I thing there’s loads of us on here that have invested in their wonderful terry towelling sleep cap! Postage is cheap and the goods get delivered v.quickly!
I wish you well as you start your chemo. Take care and be sure to let us know how you are getting on,
Thanks so much for all you fab tips. Haven’t had a great start to the Epi, was sick by 7pm on the first day and didn’t stop all night, had to call the doctor out to give me an injection. It is horrible stuff being bright red very weird when everything turns red!! Have managed to eat breakfast today for the first time. Just going for simple things at the mo.
Think I am suffering from the sickness as i have coeliac disease (gluten allergy) which is the same symptoms and its the same with your immune system attacking the drug or wheat. But have been given some more drugs by the GP yesterday so think they are helping.
My mum to got me some sea bands to and think they are helping too. I am drinking some lucozade as we speak, forgot I had some in the fridge until I read your reply. I have tried the cold cap but not convinced it is going to work as didn’t feel tight or even that cold!! You said yours came out on the 2nd dose, gives me another couple of weeks then!! Will check out that site. I have been told the CMF does not make you loose your hair and it sometimes even grows back during it? I have got used the idea of 28weeks an d as you said it will fly by.
What did you do about work? I was hoping to be back at work on Monday but not so sure now! I am an Occupational Therapist, i work in the community with people with learning difficulties. My job involves a lot of driving around to see people and so assessments so not sure how I will cope. Will just`have to see how it goes i guess. Have you felt tired with it at all?
Thanks so so much for you helpful tips i have written them all down
Was glad to hear those tips princess as I am due to start on E CMF next week,am finding the thought a tad daunting to be honest.But I know it’s necessary so have to do it. Worked it out the other day that will have been having treatment for almost a year by the time the chemo & radiotherapy is finished.I too am on the Tact 2 test on the standard , might have been nice if it had been one that made it over quicker but never mind just hope that they manage to gain something from it that will help others one day. Kath
Al - there are a million types of anti-sickness meds they can give you so if you haven’t got it nailed first time be sure to mention it to the nurses when you have your next session and they can change them. I have been on Ondansetron and Dex from the start, along with Domperidone additionally as req’d. Luckily this combination has totally worked for me from the start and I have never been sick. Personally I have found that the CMF makes you sell much less nauseous than the Epi does, so thats something to look forward too! I haven’t worked since I was first diagnosed in Mar. I was hoping to work during chemo (I’m in the Armed Forces) but I just haven’t felt able to or wanted to! I do have many ‘good’ days but also have some ‘bad days’. So, when I’m feeling ‘normal’ I’ll be bu**ered if I’m gonna spend those precious days at work!! Also, keeping my contact with big groups of people to a minimum has no doubt helped me to remain infection free. My hair started to grow back soon as I switched to CMF. I am mid way through my 3rd CMF cycle now and have quite an impressive covering, although I’m not ready to go ‘commando’ just yet!!! I found that the tiredness progressed as the Epi accumulated. I felt v.g after No1 and pretty good after No2 but No3 totally floored me!!! It is like nothing I have ever felt before! Don’t get me wrong, I was able to get out of bed and get myself bathed and stuff and didn’t need afternoon naps or anything, it was just my whole body felt physically exhausted. I would get ready to go out, but by the time I was ready I had no energy left! Hence the Lucozade!!! No4 was much better though and the CMF is better still.
Kath - I wish you well as your first chemo approaches. I was shi**ting myself when I went for my first one! I don’t mind telling you that I cried and everything!! My poor boyfriend was there to hold my hand and I couldn’t have done it without him! In all honesty though the sleepless nights I had before my first session really weren’t worth it! The whole experience was nowhere near as bad as I had allowed myself to imagine it to be. Me and my overactive imagination!!! I really hope you get on ok, what day are you going? My day 8 CMF is next weds,
Kelly thanks again , I was planning to work through it but not feeling the same thing as you!! I have a horse and really want to be able to keep that up, so going to try work on Monday but ask to reduce my hours to 9.30 - 2.30 or something as think i will be able to manage on that for the time being. But if you say the tiredness builds up I might not bother. Think you are right about not being in big groups, have said I wont go into work if anyone is ill. Also sometimes my patients can be poorly so will have to be really careful.
Really disappointed with NHS thought they would be good for sick pay but I only get 4 months full pay for 3 years service. I then go onto 4 months half pay. Not great as last thing I want to do is worry about money, have had offers from family but don’t want to be dependent!! We have put a claim in for our critical illness insurance for my mortgage. Have been told people have had good results, hope so as would be one less worry.
Kath - Good luck we are on the same arm!! you are only a bit behind me. Def take the anti sickness they give you!! I have had the same drugs for anti-sickness as Kelly and now i am taking them properly i am fine. Think i struggled the 1st night so much as the injection against nausea they gave me during the chemo wore off and i started to feel sick, by the time i took the drugs they would not stay down, should have taken them at the very early signs of not feeling right. Well have learnt my lesson!! The best description of how I have been feeling is like having a bad hangover!! I have been up and about today so not doing badly. The actually chemo bit was not nearly as bad as i thought like Kelly said. Don’t know what i was expecting!! One good thing was with the Epi bit the nurse has to push the syringe through so is with you most of the time, this made me feel better.
Best of luck and keep in touch, really good to know how others are getting on
al me too I have a Highland , fortunately if I do get knocked off my feet my husband will look after him. Poor man he didn’t sign up for s**t shovelling & had to do it for 6wks after my op, am hoping to be able to ride regularly even if not every day.Hope my boy will stop this b***y disease taking over my whole life. So now have to go to get Lucozade, have already bought the sick bands, oh dear not long 'til Tuesday.Don’t think I’ve stopped being frightened since they the diagnosis, was in a total panic the day before my op am hoping I’ll be able to keep a smile on my face Tue ( a good night’s sleep Mon would be nice too )
ah brill, I had been looking for a new horse when i got diagnosed, Had just found a 3 yo percheron x tb, the day before i got diagnosed! Put him on hold but then thought blow it I’m buying him anyway!! That was in June and he has been great. He was backed for hacking but not much else. I had to have time off during my 1st op, was back on board by 2 weeks, then my auxiliary clearance only kept me out of the saddle for 10days!! then had the last month to ride full time, even taught him to jump and went to the beach on Sunday. was so good. I haven’t been able to ride yet but plan to by sat. My poor mum has drawn the short straw of looking after mine but as she has my old horse as well she does not mind. Your Hubby must be great, would get my boyfriend near horse with out a lot of persuasion!! he he . think horses are great therapy. hope you get lots of riding in this weekend.
Thanks Mosheyb, already one the case!! So expensive but recon its worth a try, finding it hard to take in the evenings on an empty stomach as eating little and often at mo. But getting my morning dose.
I’m due to start my tact 2 trial arm 1 next week i wanted to go on this trial as the breast cancer i have is genetic so iam doing this for my 2 daughters and 2 grand daughters who have the unfortuate luck to have breast cancer from both sides of the family so this is for them maybe by doing this i can help their chances should they develope anything in the future so thank you everyone on the trial
Hi Joanne,
I am on TACT2 arm one and started my first epi today (20 May). I cannot think of a better reason for being on a trial than for you girls, I am doing this for my 3 daughters, no granddaughters yet but the odds are heavily weighted to girls as I only have one son and the darlingest grandson, who the storks decided to bless us with. Epirubicin is one of the big cancer busters and we get a massive dose on this trial, which is another good reason for joining for yourself. I am 9 hours after treatment and have no side effects but I am keeping my fingers crossed and will see how I am when I wake up. I feel like I can sleep tonight but was warned that I could be very awake from the steroids, I dozed for an hour until the dog woke me up barking at 9pm. Just taken my second ‘strong anti sickness’ as directed. Bright pink wee is fading fast so I am tracking the drug getting out my body by watching the change as it can irritate your bladder apparently.
It would be great if we could keep in touch and ask away if I can be of any help. Good luck.
Lily x
Lily, hope you are still feeling ok. Did you use the cold cap? I have my 3rd Epi on Friday (not on the trial but Epi 3-weekly then CMF days 1 and 8 for four months, then rads). I’ve used the neoprene cold cap for the first two and so far my hair has thinned, but not so anyone else would notice. It’s thinnest along the parting but probably looks worse because I haven’t coloured it since before the first Epi so there are too many silver hairs! My daughter cut it to between shoulder and collar length, and layered it a bit, and I’m only washing it every 4-5 days and combing it only once a day. A scant handful is in the comb each morning but none has fallen without being pulled by comb or hand. I got satin pillowcases (from an eBay shop) which are supposed to be kind to the hair. No need yet for wigs, buffs or beanies but they’re ready in case there’s a big moult next week.
I was constipated by the second night after the first Epi, relieved by Senokot for two nights, then had a touch of diarrhoea at the beginning of the 3rd week (after the middle week on routine antibiotics and antifungal tablets). Second Epi I took Senokot prophylactically the first and second nights, and had much less constipation, and no diarrhoea this time. I also phased the steroids so I took two the first day, then one on the second and third days, rather than two on the second day. Slept better as a result. Have had no nausea at all, and Omeprazole the second time worked better for slight heartburn than the Gaviscon I’d been guzzling. Do drink loads, it flushes it through quicker. My urine was normal within 7 hours each time, but I was rushing to the loo with the drip trolley attached as soon as the chemo infusion was finished!
Hi
Palomino, that was really useful stuff thanks. I dyed my hair just before chemo but I have been told that organic dyes are ok but I have only heard of Sainsbury seeling them. Or you can buy hair dye made for chemo patients from an ebay shop apparently, prob from USA. My treatment is the same as yours as I did not get the option with capecitabine that I wanted, I take the view that fate picked this one and the extra drug I get might be the very one that does it for me, fingers crossed. They don’t seem to know what exactly will work, so a computer selection is as logical as anything else. I cut my hair much shorter and had the cold cap, it nearly blew my brains for 5 minutes but pride stopped me from giving up too quickly, when sitting next to an adorable 73 year old lady who was wearing a helmet with no problem at all. She said ‘I don’t really see why I should lose my hair’. I said do you have breast cancer when I saw epi going in and she said ‘oh I do hope not dear, I had one off years ago’. The people you meet just do it every time, don’t you think. I was with several people who go every single week!! Hats off to them.
Joanne - one other bonus, I did not have to pay for my 7 prescriptions, so I guess your drugs are free when on a trial, and they really mount up as you get individual ones for each treatment.
Hugs everyone with your next step
lily x
Hi
bumping again as I know there are a lot of new TACT 2ers logging in. They must be having a big push to reach their final numbers for the trial, I am on arm one, the long long long long one. Hope you are well and you might like to read some of the comments above
Lily x
I am on tact 2 arm one. Now i’ve had my 3rd epi and wondering if the CMF is going to be any better as I have not had an easy time on epi, even with the antisickness pills I am sick for the first few days and nauseous for around two weeks. I am also extremely tired and fall asleep often, I was expecting to go back to work but am finding it impossible. I am hoping it is easier on CMF.
Liz x
I also drew the short straw and ended up on arm 1 of Tact 2 Have just had the first cmf today and so far so good. I was anxious as I’ve had a bit of a rough ride on epi, fatigue, nausea and most scary of all breathlessness. Pegging washing out or climbing stairs felt like I’d run a maratho(not that I’ve ever run a marathon.) My onc said many women find cmf easier as it doesn’t have the same ‘kick’ in it as epi and so side effects generally tend to be less severe.
Was also told my hair will now start to grow back so I’m holding on to all the good news at the moment.
Trish
Hiya, I’ve just had my second lot of the first cycle of CMF and although I’ve felt more nauseous than I did on the epi it is not as bad. Obviously, still got a long way to go before I’ve finished - and must avoid the habit of counting the number of needles I have left to go before I am finished and instead count down the cycles - but it will finish at some point soon.
Think I may have a solution to the bad taste in mouth. I sucked on ice lollies an hour before, through my chemo and hour after and so far no bad taste fingers crossed.
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