starting chemo in june 2014

[Cas164]

Roxie, wishing you an easy passage through to the end :-))

Casx

[Roxie65]

Fingers crossed for you both that it goes ahead next week!! I have had chemo 5 this afternoon and the feeling that this time in 3 weeks time chemo would have finished really is a great feeling and has given me a boost.  Good luck!!!! xxxx

[Cas164]

Hi Julie , hopefully chemo will be ok for next week, fingers crossed. I'm feeling brighter already as antibiotics must be working. I've had two different responses re cranberry juice. The onc last time said drink loads plus cranberry. The nurse last night said they now don't routinely recommend cranberry! I know certain foods such a grapefruit interfere with docetaxol so wondering if cranberry is similar. I can't find much on google either. My bc nurse today had no idea so I'm left in a bit of a dilemma !! Hay ho if that was my only worry I'd be laughing!

Roll on no 5 the 1 more to go !!!! Xxxx

[Julie286]

Hi cas, that's a nightmare getting infections. Will you still get your chemo next week? I'm feeling ok but my bloods (neutrafils) have been really low each time and it's been touch and go as to whether the chemo has gone ahead each time. I know they'd only delay a week but I'm so desperate to keep to the schedule and have it over and done with. Have the antibiotics done the trick? I'm assuming cranberry juice is ok to take (supposed to be good under 'normal' circumstances)? Have everything crossed that we both go ahead next Wednesday and then again 3 weeks later - 24th September here we come!!!!!!! Xxxx

[Cas164]

Has anyone else had problems with urine tract infections. I'm totally fed up as was hoping to feel nearly normal this week before number 5 next Wednesday but ended up back in hospital with my. 2 nd urine infection. So back on antibiotics and feeling totally miserable :-(((((

I have to say I haven't had the energy or enthusiasm to get my forms filled in for the gene testing. I am double negative with her positive. I will be having surgery once I've finished chemo., then radio . I will speak to the surgeon after chemo and decide whether it will be a double or single mx . My family history isn't good but my main concern is that I have 2 daughters and would hate to pass on my faulty genes . Anyway one step at a time.

We are all getting close to the chemo finishing line ,

Cas x

[Roxie65]

Hi Everyone

I totally agree with Julie, if we cant be ourselves on here where can we.  We all know that feeling down is a big part of this horrid disease and treatment and we all know that daily we put on a brave positive face for family and friends.  But here we can let it all out and no one says you have to stay positive because they understand that letting it all out does not mean we are not positive, it means we need a release and here we can do that.  That how we can support each other in a way others cant support us.

I was eligible for gene testing due to having triple negative but also my family history made me eligible too, otherwise I would not have qualified.  As they do not know what "feeds" so to speak triple negative in England that makes you eligible for gene testing.  Thankfully mine wasnt fuelled by a faulty BRCA1 or BRCA2.  That is why I have agreed to be involved in the research for them to identify new gene faults that cause both ovary and breast cancer as the more they can identify the more we can guard against getting it again.

I do know you can still get gene tested if you dont qualify but it costs around £2000.00.  To be honest if you dont qualify then the chances are you dont have the fault gene's anyway.

Hope this helps.  Hope your are feeling better today runner!!

Onwards and upwards.  xxx

[Julie286]

Morning. Runner, don't apologise for being down - if we can't be down on here where people know how you're feeling - then we're all in trouble! I find that people expect you to be so positive all the time but it's so incredibly emotional and having so much time on your hands just gives you the opportunity to go over and over things. Having a good cry doesn't even help that much any more!!! Is everyone getting gene testing? I had skin cancer a couple of years ago (caught early thankfully so only needed it removing) but because I'm relatively young (45) I assumed I would get gene tested ..... But all I had was a family history questionnaire to complete and they may or may not offer screening (for other cancers I assume?) they don't think I'll be gene tested. I have 2 teenage girls and a sister 10 years younger than me and for their sake I would like the opportunity to be tested. Does the type of cancer make a difference? Mine was lobular? Hope everyone is getting on ok. 5th FEC next Wednesday then only one more after that. Just feel so tired - but there's a tiny bit of 'light at the end of the tunnel' now and that (along with amazing family and friends) is what's getting me through now. Off to Edinburgh for a girly day tomorrow - weather forecast is miserable rain but my wispy hair now only takes a few minutes to dry and my head band covers most of my head ..... 'Every cloud ....' as they say!!!!!! Xxxx

[runner29]

I've just had my 5th chemo so please accept my apologies for not naming people but my head is fuzzy! I've been trying to get gene test but was told 18 weeks! I then transferred my treatment to a different hospital (for reasons to do with the surgeon being an idiot! Lol) and they said to re-refer and note that it was urgent as I was 29 with triple negative and it may help inform surgery decisions. In all honesty won't as my new surgeon has already agreed to take them both off thank God!

As an aside I'm feeling pretty rubbish lately, finally got my results of MRI after cycle 4 and it said the 27mm tissue has only reduced to 24mm but the tumour volume has decreased, I asked my BCN what that meant and she said that she didn't know and that I'd have to ask the oncologist. Can't get appointments easily with the oncologist and I'm left thinking what is the point if this isn't even working! Sorry to be so down xxx

[Roxie65]

Hi Cas

Thanks tomorrow is my next one.

Was your gene test not put down as an emergency as part of your treatment plan?  They done mine as that so I would know what to do after chemo.  They then told me from the gene place they would see me in September, but once I said I need the results then they see me on a cancellation.

Good luck everyone hope all is going well!! xx

[Cas164]

Brilliant Roxy about your gene test. I've hit a brick wall trying to get mine sorted and not expected to hear/ get an appointment for 18 weeks! So I'm concentrating on getting through my chemo first before I go on for surgery and radiotherapy.

I'm sure you will get through your next two chemos. I think as we all know each one throws up its little challenges and we deal with them as they arise. So be positive hold on to the fact you have a light at the end of the tunnel you are nearly there :-)) x

[Roxie65]

Hi everyone

Wishing everyone especially those with all the added complications all the best.

After last posting about my last chemo's side effects being minimal I was hit by a load of new side effects which knocked me sideways so not posting I am doing  well again so as not to tempt fate!

I was wondering how I am going to cope with the last two chemo's evern considered not having them at my lowest point but today I received my gene test results which were negative and although I thought I wasnt worrying over them the weight has been lifted from my shoulders.  I couldnt wait to tell my sister and kids that they dont have to worry, such an amazing feeling.

So now I am going into my last two chemo's knowing my radiotherapy has now been booked to start about a week after my last and I can hopefully see an end to all this horrid treatment by the end of October. Having to have boosters to the radiotherapy but can handle that thought now.  I wont count my chickens though until all finished!!!

Good luck and love to you all xxxx

[cowgirl]

Hi Ria,

I also am sorry about your news....hoping they can figure out a good solution for you.  Lots of good thoughts for you....

Merrill

[Roxie65]

Hi Ria
So sorry to hear your news. I think if I remember right you have only had one dose of the new chemo drug, is that right? Will they not try it for a bit longer before they do surgery? I have everything crossed for you and hope things go well. Will be thinking of you. xxx

[ria2056]

morning ladies

Well had my ultrasound yesterday and it was not good news my large 4inch tumour has not shrunk at all, seems the only reason it feels smaller is chemo has softened it.

Now very unsure with the next stage of my treatment.

[Julie286]

Fabulous news! I've heard of lots of people missing the last chemo - and you've had the bulk of it. Hope there's soon going to be big celebrations in your house!! Lots of love xx

[Roxie65]

Hi Cowgirl

Thats brilliant news that there is no tumor!!!  Hopefully with the other options the chemo you have had so far will have been enough.  I am sure when you see your oncologist they will put your mind at rest as how things will proceed.  Big hugs and wishing you all the best xxxx

[Cas164]

Hi Cowgirl,

A huge hug and best wishes for the next part of your journey.

Casc

[Pixie100]

Hi Cowgirl

So glad to hear your results came back clear. Good luck with the next stage. Hopefully you've had enough chemo by now. It seems from this forum that it's not uncommon to have to miss the last round.

Pxx

[Jbf57]

Hi Cowgirl
Fantastic news! So very pleased for you and you must be so relieved. Fingers crossed that the treatment you've had so far will be sufficient and that anything you have next, like tamoxifen will continue to keep things going along the right path. Take good care of yourself.
Best wishes Jane xxxxx

[cowgirl]

Dear "thread" friends,

I can't tell you how much I have appreciated your kind words and support.  Late this afternoon I called the oncologist's office to get the results of the MRI of my brain that I had yesterday....everything is clear or negative!   There is no evidence of a tumor in my inner ear - thank heavens!   I have been a wreck.  It is kind of "good news/bad news", because it means that I won't need brain surgery, but the chemo drugs are causing the problem and although I need the final chemo treatment, apparently I can't risk more damage to my inner ears.  So, I guess I am going to have to hope that 75% of my chemo treatment is good enough.  I will meet with my oncologist next week and maybe start tamoxifen or whatever.  

Love to you all and I hope you are getting through this....

[Julie286]

Hi cowgirl. Sending you all the love and best wishes in the world. Hope everything's ok xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[Roxie65]

Hi Cowgirl

Thinking of you and hoping that all turns out well.  We are all behind you xxx

[runner29]

Cowgirl sending positive thoughts your way. I really hope the MRI does nor show any tumours and that the vertigo gets better. Xxx

[Jbf57]

Hi Cowgirl, thinking about you and hoping you get your MRI results quickly and can get this awful vertigo etc sorted successfully and with a good outcome for you. I'm sure everyone on this thread is wishing you well.
Janexxxx

[mummy2dolly]

I hope you don't have to wait too long for your MRI results cowgirl and that there is nothing sinister there. Please keep us posted....

[Lucy_BCC]

Hi cowgirl
I am sorry to read you have this worry, our helpliners are on hand with practical and emotional support for you, please feel free to call 0808 800 6000, lines open again in the morning at 9am

Weekdays 9-5 and Sat 10-2

Take care
Lucy BCC

[Cas164]

Cowgirl sending you the positive thoughts and energy. Take comfort in the fact the medics are looking after you and finding all the facts to make the right decisions. Fingers crossed for you. Xxxxxx

[cowgirl]

Hi Everyone,

I hope all of you are getting through this ....I keep having this awful dizziness/vertigo with the chemo (TC).  The 1st and 2nd chemos caused just a few days of dizziness each time, but here it is 2 weeks after my 3rd chemo and I am still not much better.  I have been really wobbly.  My oncologist sent me to see an ear/nose/throat doctor to try to figure out this vertigo.  Well, that doctor said that I shouldn't have any more chemo, because it appears to be damaging my inner ears and causing the dizziness - possibly permanently.  But he also said I need an MRI of my brain/ears because there may be a tumor growing in the inner ear.  I went to talk to my oncologist after I left the ENT doc and he said that while it is not good to miss my final chemo (I would only be getting 75% of the benefit), but having permanent dizziness is worse.  What a mess - between a rock and a hard place.  So, I really don't know what to expect, but it is terrifying.  The MRI is this afternoon.

[Cas164]

I wish all the positive thoughts and energy could be bottled up especially for us all on chemo days and there after. Had my first docetaxol today not sure what to expect so far so good although haven't really had energy to do anything apart from a little surfing of the net and listening to desert island disc podcasts!

I'm hoping for a easy ride so can I have lots of positive energy and thoughts catapulted towards me please and I'll pass them on to the next person when needed.

Cas x .

[Jbf57]

Morning one and all!
Up with the lark, actually I don't think anything was stirring at 2 am, no correction, husband was snoring for England, the rest of the UK and Europe! Was already awake though, probably thanks to pondering about starting tax today and also no doubt down to yesterday's steroids, even though I took them before 11am. Never mind! All in a good cause. Hope everyone having treatment today fares well, and of course best wishes and positive thoughts to the rest of you whatever stage you're at. And Jinny, if you happen to read this, chin up, best foot forward and remember you're going through this difficult time in order to give you the best possible chance of beating bc! We're all going through it, you're not alone, and certainly lots of other people are suffering with you. Take care, let us know how you get on. I'm going to load the washing machine, make another cup of coffee and see what delights I can find on Netflix to pass the next hour!
Best wishes to everyone xxxxxxx

[Roxie65]

Glad all went well so far Ria fingers crossed no side effects xx

[ria2056]

Afternoon All

Well went in at 9.30 and it turns out that this new chemo drug has to be made up on the morning you come in, its called Abraxane, so far so good so alot happier now just waing fof side effects to kick in

[Roxie65]

Hi All

Had a trainee do my bloods the day before chemo and lets just say my blood shot everywhere and made my daughter feel sick lol then chemo day I had a nurse who really didnt want to be at work lol...she shoved the catheter in and it hurst as she wiggled it round and then took it out to tell my my veins look fat but they are actually really thin and it had gone right through and bent it.  I then felt sick before chemo started lol.  

Things then improved and she gave me the extra flush I needed when she disappeard for 20 mins to go to the cash machine lol another nurse came over and put a fast flush through which was good.  Well all that said my side effects are still there but so far not as bad.  Not sure if its all these meds now working or whether my body has now got used to FEC but I still feel nausea but not sick or nearly as bad, Heartburn still a problem but taking what the hospital gave me ply having gaviscon at night not sure if I should but helps and the onc agreed that with the lactose she gave me I could also take 2 senna at night which has helped slightly.  My arm is swollen and a little sore but not too bad but that did come on later last time and it was still hurting from last time so that may be it.

Anyway I am much more positive this may be a better regime so fingers crossed, so ladies hopefully there is hope for us all not to have such a rotten time.  

Thinking of you all going through your trials and hoping that things are also improving for you all and I hope Ria that this chemo works for you.   we are all thinking of you.  Big hugs xxxx

[cowgirl]

Hi Ria, I am hoping for the best for you with the latest chemo drugs.  We are all there with you.

[Pixie100]

Good luck today Ria! Hope it goes ok this time.

[Roxie65]

Good luck Ria fingers crossed this one will work!!! xx

[ria2056]

Well saw the oncologist this morning, whom has decided that she wants to give another chemo drug a go, this one I can not even pronounce, but she informs me its not used often as it is very expensive, so tomorrow morning I am having my third different type of chemo in as many weeks, the SEs will be about the same if not worse, so looking forward to that NOT?

If all else fails and third time lucky goes wrong then its down to surgery I go to remove the offending 4inch tumour

[Pixie100]

Hi everyone

I had fourth cycle of AC last week and seemed to do a bit better this time. Three days mostly in bed feeling sickly but since then the meds seemed to have kicked and have not had such bad nausea. I was advised to avoid eating bread and that may have helped. Have also been using lemon and ginger a lot in food and drinks. Took senna tablets before and after chemo and has helped a bit with the constipation. Somehow feel like I am getting chemo out of my system quicker this time. Not sleeping well with the steroids and have had loads of hot flushes and nasty taste in mouth but would rather that than the sickness.

Px

[sugar8]

Good Luck Louise3721
You must be thinking. What a relief?. Hope you fell healthy and stronger every day. What a roller coaster cancer is!!

[Cas164]

Hi Runner,

My first dose is next Wednesday . I have to go in Tuesday for my first herceptin then have the docetaxol the day after. So a fun week in store for me....

I found FEC ok once you get over the first few days of keeping the nausea under control which for me was to make sure I took donperinone tabs every 4 hours for a couple of days after. However, I think maybe the further you go through treatment the harder it is to bounce back as quickly.
I wore a cold cap for each FEC the last time was unpleasant however I still have hair although balding on top and quite thin. I've been able to get away with a baseball cap but I don't think I will bother with the cold cap from now on. I intend to get my hair cropped really short so it can all grow back together I hope!
I suppose we can all just look forward to a brand new head of hair after treatment!
I will keep my fingers crossed that I will sail through it as quickly and easily as possible.
Casx

[runner29]

Ria I'm so sorry to hear about all the crap you're going through with this at the moment, I also had a massive allergic reaction to my second docetaxol and couldn't breathe this was also after 20mls. They stopped it, gave me IV steroids and antihistamine then waited 30 mins for it to go round my system, slowed down the docetaxol from 1 hour to 1 and a half hours and managed to give me the chemo.

Cas I've just finished 3 docetaxol, had my first FEC on Monday and docetaxol isn't as grim as you might think. I did have some SEs, incredible bone, muscle and joint pain on day 4 of my first cycle which put me in bed all day unable to move but then I was prescribed extra steroids to take through til day 5 and these really helped, I managed to pretty much carry on as normal. I had a dodgy high temp fainting issue as well but think this could have happened on any chemo drug. With hair I still have a fair covering on my shaved head, just the side bits where I have slept have rubbed off and my lower lashes but still have my top and eyebrows. I was told the opposite that when you start FEC it will all come out. I wonder if it's just a cumulative thing and when you get to your last cycles it all starts to go? When is your first docetaxol?

Xxx

[Louise3721]

Hi ladies just dropping in from April thread. So sorry to hear that chemotherapy has been so hard on you. Please speak to your oncologist the nausea drug I have is Emend and its very effective

Ria i am impressed that you have been to work I have not been in since March I too have horrible time with s/es. I dread my chemotherapy and get sick so I am on tranquilisers to take before chemotherapy and they work well.

I was told that the effects of chemotherapy are accumalative and on our thread we all agree that this is the case. But we also agree that it's better than cancer.
Chin up ladies make sure you you tell your onc every side effect because there is a lot of drugs to help u. Also ask about alternative therapies my hospital offer these free. Make sure u sign up to looking good feeling better course because its great fun free and you meet ladies in the same boat.
Good luck and there is an end I have final chemotherapy tomorrow righting off next 10 days but can't wait to be done xx

[angel77]

Hi cowgirl...you sound exactly the same as me
I had my 3rd TC-h and ive never felt so rubbish in my life after it. I had it on 25th july and still feel rubbish now
I have a hacking cough and my doctor said its a chemo cough lol crazy
..im.due my last one on 15th of aug and like u im.dreading.it
My doctor said after every chemo they get more worse 😞 just want all this to be over now
If i feel.like this still ill on the day of my next chemo i know im going to suffer worse.. ive been in bed 5 days and thats not like me xxxx hang in there xxxx

[cowgirl]

Hi Ria,

I am so sorry to hear about your problems with the chemo and I don't blame you for getting depressed.....I had my 3rd chemo (TC) a week ago and I expected to feel horrid for maybe 3 or 4 days, but this time it was much worse.  Here it is a week later and I am finally starting to feel a little better.  I felt so awful (still throwing up and terribly dizzy) yesterday that I just lay on the couch and cried - and Ria, I don't have nearly as much as you have to feel miserable about..... My poor husband was running around to pharmacies trying to find a new nausea drug that the doc prescribed.  This crappy disease and wicked treatment - $%!&.  Ria, I hope they can figure out how to help you get your chemo.  I have one more round of this chemo in two weeks - and since the side effects are just getting worse and worse, I am already dreading it.  Hang in there everyone.

[ria2056]

well yesterday was awful, had a massive allergic reaction to the doxetaxel this time 7 minutes and 20 mls they had to stop it. Iam now back to square one

My FEC did not work my white blood cell were low which set me back a week with work, last week DC gave me horrid SE and i had to have a week off work and yesterday did not go at all so i am really upset my chemo is now delayed and now work is mucked up again. 

Got oncon Thursday and probably start another regime.

Is there anyone who has had this type of chaos with chemo , cause I am getting really depressed about it

[Cas164]

Ria, hope you are doing OK Sending you lots of positive thoughts and energy . Casx

[sugar8]

How are you Ria and moan you should.

stay positive
Sugar8

[Roxie65]

Good luck Ria hope it isn't as bad as you think and the steroids help. xx

[ria2056]

Off to chemo this morning and dreading it, i was really bad with my new regime and oncologist informed me it is not going to get any better this time. I am going to get extra steroids but hell not looking forward to being bad for 10 days at least 

Sorry for the moan 

[Flutte]

Hi all,

Hope everyone coping ok and enjoying a slight distraction with Commonwealth games.

Thought I would share a funny with you... I have a picc line and on Tuesday went in for normal pre chemo bloods.  Well the nurse not happy with the way it looked and thought it might be infected so had to see doctor.  Doctor thought there might be a clot so sent off for a doppler ultrasound.  When we went to the department for it a nurse said you must be from Oncology, after I asked my daughter how did she know and my daughter said it must be something to do with you wearing a bandana and looking like you have no hair under it...lol.  When I went in for the doppler the lady said take off your trousers and shoes.....well the picc is in my arm...so I was just stood there looking from my arm to my legs in total confusion until my daughter told her its my arm...she then apologised and explaned she had been doing legs all morning.  Upshot was no infection and no clot. 

Had 3rd Fec yesterday and now like most of you half way through.  Change to 3 x Tax from next time.

Take care all.  xxx