hi everyone,new to the forum,my lovely wife who in april was diagnosed with breast
cancer,and had the lump removed along with 4 lymph nodes in may will start her
chemo next friday,i was just wondering what to expect,we have opted for the tact 2
trial and have been accepted for group 2 accelerated treatment,she has been so strong and brave about all this i was just wondering if anyone is having this accelerated treatment what sort of side affects are you experiencing
Hi simes,
you’ve definately come to the right place! Welcome, although I’m sorry that you are here (if you know what I mean?!).
I was diagnosed in March, age 34, and had a mastectomy and node clearance. I started chemo in May and have had 4 sesions so far. As with your wife I am on arm 2 of the TACT2 trial, accelerated Epi followed by standard CMF, 5 1/2 months in total.
I have just finished the Epi and have my first CMF next weds. Firstly, before each chemo session a blood sample is taken to check the count is good enough to have the chemo. I have mine at my local hospital the day before my chemo, in the morning. The next day I go to the chemo day centre for chemo. They connect you to a drip (apologies if you know all this already!) and give you some fluid, along with IV anti-sickness drugs. The Epi is red in colour (which means red wee!!!) and is given via a humungous syringe or 2. After this you are usually given some more IV anti-sickness. The cannula is then removed and away you go!
They will give your wife an assortment of anti-sickness tabs to take at various intervals once she gets home. It is important that she takes these, even if she feels ok. One of the anti-sickness meds is a steroid (dexamethasone). This may make her quite hyper for a while and may give her an increased appetite. Also, this is the one that tends to cause sleep disturbances, so Sky+ loads for her!!
As the epi is accelerated your wife will be having a ‘GCSF’ injection called ‘neulasta’ around 24 hours after each Epi. The district nurse can do this or yourself, or she can ‘self administer’. My boyfriend gave me mine. This inj stimulates bone marrow production and does have side effects. I would get some ‘bone’ pain, particularly in my legs, around 24 hrs after this inj. You can also feel generally ‘achy’, its fine to take paracetamol or nurofen for this. It goes as quick as it comes to be honest.
The other major side effects I have found is fatigue and tiredness. Also, you can get a very ‘foggy’ head. She may find at times that she just has absolutely no energy and her body just won’t let her do anything. I find that about a week after the epi I start to feel totally ‘normal’ again.
Personally I have never been sick on the chemo, although nausea has been a problem. I just take all the anti-sickness meds I’m given, wear travel bands and drink lots of water. If she is struggling with sickness she must tell the nurses who will change her anti-sickness tabs.
My hair fell out 1 day after my 2nd epi. This was v.traumatic, even though my OH had already shaved it off for me! Be prepared for tears!!! The hair falling out is as painful mentally as it is physically.
In a nutshell, the main side effects I have found with the accelerated treatment are the tiredness, achy bones and nausea. All of these disappear within a week though and I always have 1 good week. I found that the side effects got slightly worse with each treatment as it was accumulating. Apparently, another common side effect is constipation (because of the steroids). I never suffer with this but I make sure I eat a high fibre diet and drink LOADS of water!! You can get a sore mouth too so I recommend an ultra soft bristle tooth brush and alcohol free mouthwash.
I really hope this helps and I haven’t waffled too much!! The treatment will be tough on both of you but the time soon flies. Being on a trial is good too as it means they keep an even closer eye on us! Take care and I wish you and your wife well as she starts her treatment,
Kelly
-x-
P.S. Taste changes are v.common - I’ve not touched my fav ‘Strongbow’ or wine since starting chemo as I can not stand it!! Developed a yearning for alcopops instead now!!!
Re the dexamethasone:
The person I saw from pharmacy advised take the second daily dose probably around 2pm and certainly no later than 4pm because of the risk of insomnia.
mousy
hi kelly,many thanks for your reply,my lovely wife and i have just read it,and are mentally preparing ourselves
thanks again
simon
Hi Simes,
I’m just ahead of Kelly, finished my accelerated epi and yesterday had the first part of the second CMF - does that make sense???
Very similar to kelly main problems were naseua (not been sick once though) and extreme tiredness - on bad days I could easily sleep standing up. the good days with me totally out number the bad days and I have been thankful for not having the side effects that I expected.watch out for people with colds,bugs etc.I have had anti biotics 3 times - twice for chest infections and have found that when your body is low with an infection more side effects have the ability to creep in. The injection the day after chemo never gave me any side effects and different to Kelly my hospital doesn’t give anti sickness etc whilst giving the chemo - i had to take 4 steroid tablets and 2 strong anti sickness an hour prior to having chemo.
The hair loss for me was dramatic but mega helped by my daughter - happened about the same time as Kelly stated above, 2 days before I lost mine my 24 year old daughter had her long hair shaved off in work for Breast Cancer care -she raised more than £4600 so she was the one together with my other daughter who shaved off my hair when it started coming out in clumps. My husband was watching and my daughters boyfriend was taking photos like he took photos of my daughter having her head shaved - so there were no time for tears and as we had had a bald head walking around the house for 2 days I had got quite used to the idea
Just one thought - when she is having her chemo if you notice that the saline solution runs out just after the chemo finishes INSIST that they run more saline through the IV to wash out the veins. Mine weren’t doing this and as the chemo is so strong my veins have calapsed and we get HUGE diffidulties trying to find a vein for them to use and a very painful arm - annoying as this can be avoided
all the best luck with the treatment - try to get your wife (and yourself) to post your feelings on this site, it really does help as you will find that sometimes it helps to get rid of worries here instead of using the family for everything as obviously this is going to effect you all. I have a very close marraige but find this site brilliant for ‘off loading’ and have learnt loads from it
thanks for your comments kelyn,i am taking it all in things happen so fast,she went for her wig fitting last saturday
and ordered 3,they are so good and i have told her that i think she was a bit wary at first she has lovely long hair
at the moment and is trying to deceide whether to have it cut short before her chemo starts.any help on this matter
would be welcome,i no she gets quite upset about this subject.
Hiya Simon,
Just a quick one re: hair. I had very long hair when 1st diagnosed and was strongly advised to get it cut short prior to chemo. I was told that prior to your hair falling out your scalp gets v.v.painful and that the longer the hair, the more painful it would be.
This was a spot on piece of advice to be honest! I did get my very long hair cut short. Took my simon with me for moral support. I said nothing at all during the hair cut (my hairdresser knew what was what) and cried buckets when we got out of the hairdressers. Made Simon take me to the pub as soon as I had composed myself!!
When your hair starts falling out it really is v.painful and I don’t think I could’ve beared it if it were long. Also, its v.messy and long hair can get in your food and stuff.
Its a difficult decision for her. My simon actually shaved all my hair off for me after my first chemo session. I was glad he did,
Take care both of you keep in touch,
Kelly
-x-
thanks kelly,will keep you posted
simon
I had short to medium hair and found myself on a daily basis after the very first chemo session giving my hair a tug to see if anything was happening. when It did start to come out in my hand with a gentle tug it seemed as if i had a compulsive attitude to pull it out- I couldn’t stop but with each handful i would be saying - Oh sh** look at this.
My head ached for a good few days before I lost it all and the ache went straight after getting it shaved. I couldn’t have lasted any longer without shaving as it is frightening to see each handful coming out and see parts of your head bald - i was then in the frame of mind that nothing was much better than totally scraggy.
your wife will need lots of support when it happens but speaking to everyone, we all seem to adjust well afterwards
Hi Simes - I had my chemo 4 yrs ago, 6 x FEC, but understand the regimes are a bit different today. Ask about the cold cap - I was told it is not suitable for all chemos, and even with FEC it would only work in 10%. I got lucky!!! I kept my hair, although it thinned dramatically on top.
Nausea - I had dexamethosone in the IV drip before the FEC infusion, took the anti-emetic drugs faithfully, but because of Crohn’s complications, I got severe diarrhea and didn’t eat any solid food for 4 months. The hospital prescribed some yucky Frutijuice. Had to take dexamethasone daily throughout chemo. The nausea was pretty bad, but I found anything with ginger in it quelled the symptoms somewhat. I drank ginger ale, ginger beer, and occasionally for a treat, about an inch of Stone’s green ginger wine topped up with tonic or ginger ale.
Hope your wife does well - she certainly should with a wonderful, caring husband like you.
Liz.
thanks liz,we have asked about the cold cap but the doctor says it would not be suitable for her,well
i must say this site has been a great help to us,only 4 days to go to the first chemo session so will
keep you posted on how she gets on,just staying positive for her, i know she is dreading this friday
but we will get through it
thank you all again ,
simon
Hi Simon,
when I went for my first chemo session back in may I was soooooo nervous. Hardly slept the night before and was quite horrible to be around the few days prior. To be honest I was a bit of a bit*h. I’m only saying this in case your wife doesn’t seem ‘herself’ this week. Chemo is scary stuff.
My boyfriend had to literally drag me into the car when I went for my first session. I was petrified to be honest and seriously considered making a break for freedom when no one was looking!! I blubbed like a baby initially when the nurse first started injecting the chemo. Soon calmed down though, thanks to my amazing boyfriend and the wonderful nurses. Now I’m 4 down and feel like a pro!
I really wish your wife and yourself well for this friday. I am quite sure it will be nowhere near as bad as she is maybe imagining it will be, and I hope your first experience is as good as ours was. I still cry sometimes when I get home from the chemo day centre, not entirely sure why! Simon is prepared for this now, ever since I covered his beloved Newastle United top with mascara and snot!!
Anyway, take care both of you and let us know how you get on,
Kelly
-x-
Dear Simes
Just a quick one about hair loss. I am on FEC which is a different chemo to your wife’s, and I used the cold cap on my first session just over 2 weeks ago. However my hair is coming out at a rate of knots now (pardon the pun), and has been since day 15. It is a massive shock, and I am not prepared with wigs etc., but I did have my hair cut very short last Tuesday. No one can actually tell today that I have lost any as it’s very thick hair, but at the rate it’s going I’m sure it will be more noticeable soon. With regard to the chemo tell her that in my experience it was not as bad as anticipated, in fact it wasn’t bad at all! And with the anti emetics, I only felt a bit of nausea once or twice.
I hope it goes well for her on Friday.
And good luck with all the rest of the treatment, she will be fine I’m sure
Cecelia. x
Hi All
Mum has recently been diagnosed and is now facing the option of a third procedure to remove more cells or have a full masectomy. She has back mobility issues that complicate radiotherapy. Asisde the physical issues she is finding the psychological aspect of the diagnosis very traumatic. How I can I best support her? Who can she turn to?
Ian
Hi Ian - well, your Mom is blessed in that she has such a concerned son in her life. I don’t quite understand your post. Has your Mum had lumpectomy (WLE) and they couldn’t get clean margins? If so, perhaps mastectomy is the only option. When I was dx with an invasive tumour I was offered mastectomy and no radiotherapy or WLE and radiotherapy, so I chose the latter, always figuring I could go back for mastectomy if required. In the event, my tumour had spread to the lymph nodes, so I had to have total axillary lymph node removal, chemo and radiotherapy.
The diagnosis of cancer is very traumatic for anyone, young or old. My Dad died of bowel cancer at 59 yrs, my twin brother of brain cancer at 50 yrs, so I did have some experience of this dreadful disease, but it is quite different when you are diagnosed with it yourself. The truth then hits you.
Could you perhaps talk to your Mum’s breast cancer nurse and see what counselling facilities are available at her hospital? At my hospital in Devon, there is a “Mustard Tree Centre”, funded by the Macmillan Nurse charity, for all cancer patients. It is a drop in centre, where you can meet very compassionate counsellors any time 9-5 Mon to Fri. They also offer complementary therapies, such as aromatherpay, acupuncuture etc. and one on one counselling. Although I have never used them the Macmillan Nurses also offer good services - talk to your Mum’s GP and see if they can put her in touch with a local MacmIllan nurse. There is also a charity, Mare Curie Nurses, that help patients with cancer, but I don’t know anything about them, although I have made charitable donations to them in the past at friends’ fund raising activities.
I ithink the best way you can support your Mum is going to her appointments, and understanding what the various medics are saying. My husband (78 yrs old) came to every appt with me, as I was in no fit state to comprehend what was being said. I cannot over emphasise how much this support means.
I don’t know if this helped you, just clutching at straws and relating my own experience.
Take care, and hope your Mum does well.
Liz.
Dear Ian
I am sorry to read that your Mum has recently been diagnosed with breast cancer, for further support and information to help you to know how to best support our Mum you are very welcome to contact our freephone confidential helpline on 0808 800 6000. The helpliners are either breast care nurses or have experience of breast cancer so have an understanding of how you and your Mum may be feeling at the moment.
The helpline is open Monday to Friday 9am-5pm and Saturday 9am-2pm.
Kind regards
Emma
Forum Host
Breast Cancer Care
Hi Simon,
I just wanted to wish your wife all the best for tomorrow. The first session is always the worst, I guess its fear of the unknown and all of that. I was terrifed when I went for my first chemo and thankfully, like your wife has you, I have a very loving boyfriend who was so supportive. I couldn’t have got through it without him to be honest!
I am on E-CMF and yesterday, having completed the ‘E’ part I had my first CMF. Those first time nerves were back again and I don’t mind telling you I cried like a baby!! There was really no need to though when I think back now but I guess I was just scared. I cried when I got home and then for good measure I cried a few hours later too!!! Thankfully my boyfriend is now quite used to my ‘post chemo blues’, and since the day his beloved Newcastle United top got covered in mascara and snot he’s not cautious not to wear anything too precious!!
Anyway, enough of me wittering on! I really do hope all goes well tomorrow and that your chemo unit is a nice as mine is. Take care both of you and let us know how it goes,
Kelly
-x-
Dear Simes
Just wanted to wish you and your wife luck for tomorrow. I have my second chemo tomorrow and feel pretty relaxed about it as my first was really not bad at all. If there are nerves there, maybe ask for some Lorazepam which is what my oncologist recommended for me to take before chemo. This was mainly to calm me because I have a severe vomit phobia rather than being scared of the chemo! It worked very well as a relaxant. With regard to the chemo I could hardly wait to be hooked up… it’s what is going to make your wife and all of us ladies and gents better.
Very good luck to you both.
Cecelia. x
Hiya Simon & Mrs Simon!
Just wanted to let you know I have been thinking of you and I really hope it went well today,
Take care,
Kelly
-x-
hi everyone,
just to let you no about my wifes first session yesterday.arrived at the chemo unit abit aprehensive,but they made us feel really welcome,everyone
is so friendly it wasnt long before we where called into the ward area and the nurse made my wife comfy in a big chair i sat next to her while she had the
line put in and the treatment began,i think i was more nervous than my wife loraine,she said it went fine and didnt feel any sensations and was quite relaxed,
just avin a lie in at the moment with her,she has had her anti sickness tablet but has only really felt nausea yesterday tea time but had a ginger beer and felt ok just had a bit of a headache before bedtime but she says she feels ok just got to wait for the nurse to call to give her injection of pegfilgrastim to boost
immune system,will keep everyone informed of how we go on
once again thanks for your kind replys
simon