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lots of questions .... please can anyone help

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Re: lots of questions .... please can anyone help

Hi van, hope you will feel better soon knowing you are on the home stretch so to speak, had two fec so far and after allergic reaction again have now been switch to tax. My portacath worked fine for chemo but they won't take bloods from it so have nice bruising again from three attempts for bloods! No end in sight from all of this! At least a bit of sun so the kids can play out! Have a restful weekend. Tina

Re: lots of questions .... please can anyone help

Thanks Wriggly....

It is such a weird feeling.... energy sucked out of me.....and the weather doesnt help......aargh always moaning I am...

but you are right only two more left......thank god.....

I can sleep all day... tried to change the sheets today and couldnt manage it so curled up on them and fell asleep.... no why cant I do that at night.....

Summer duvet on... fan on.... weighed myself.... yuck ycuk and more yuck......

Keep smiling keep smiling..... laughter is the best medicine if I had the energy...

Hope you are well wriggly.... number 5.... wow.... well done you....
enjoy your weekend as much as you can....lots of rest...
take good care
Van

Re: lots of questions .... please can anyone help

So sorry the line didn't work out for you Van. I hope your veins hold out for you and the chemo fog lifts. I've just had FEC 5 and it does feel like the home run once you've had the fourth I think.
Hope you get some sleep soon - I'm the opposite, just cannot stay awake!
Erica xxx

Re: lots of questions .... please can anyone help

Hi jackie

I just looked at my spelling on last post.... how des this chemo affect every day things.... apologies for that...

Been away since one and thought sod it do something .....rather than listening to those birds... why so early... WHY

Chemo daze still around but arm so much better without the line in... the thought of dying from septicameia hit home more than the the BC...... made me take stock so much so Ive taken acouple of days of work..... will see how I feel next week..... have to remember life is for living not messing around with.....

Glad the sun is going to be out this weekend and i normally love it but boy oh boy not this time....

Nice to hear from you Jackie too.....I havent written as I felt I was being so negative and hated that....its amazing that 4 down and only 2 left is such abetter feeling than half way there.... Jackie are you havin radiotherapy.... if so hows it going....no idea what that entails....

Ive tried the manuka honey but it makes me gag....im such a wimp.... everything does at the mo....even taken those pills....that keep me awake at night to right stupid things on here....sorry if waffling.....

Even tempted to get up and walk the dog but he is soundo lucky thing.......he just looked at me as if to say how dare you switch that light on Im asleep......

Im going to stop rambling now..... have agreat day.....laughter is the best medicine.....
lots of love
Van

Re: lots of questions .... please can anyone help

Hi Van was wondering where you were.So sorry to hear that the line got infected, what a bummer,but you are 4 down that is good, I had rubbish neutrophils every time too even with GSCF but started having a tsp of Manuka honey every morning as well the plus 15 and I know this is only anecdotal but I had better WBC than before BC oh darling what can I say? just hang in there and LOL and hugs coming your way LOL Jackie

Re: lots of questions .... please can anyone help

Hello all.... havent written for a while....
line was fitted and ended up with two ifection and not had it taken out after fourth FEC yesterday.....yep only two more to go.... yippee.....

Went to the hospital today to have an injection to boost my white blood count and neutrophils..... lucky me.... ready for number 5

Off to bed now... chemo fog hitting home....

Re: lots of questions .... please can anyone help

Hi everyone, seems like we've all witnessed people having reactions, me too, but luckily never had one myself. Felt very sorry for the poor lady but as you say she was soon sitting up sipping a cold drink.

Van so glad you have finally got your line in, hope the bruising is settling and hope your SEs dont completely ruin the weekend. I am at the sore mouth and throat stage but still managed lunch and a (lukewarm) cuppa. love Carol x

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Re: lots of questions .... please can anyone help

Hi Van,

have a portacath in now, too, no more stress with the veins, thank god! Sympathise with the ordeal of having to watch the bad reaction to the drugs, what a panic that may have caused. I had anaphylaxis once as a reaction to a pain killer and it is very frightening!
Hope the SE's are keeping at bay! xxhugs, Tina.

Re: lots of questions .... please can anyone help

Hi Van
Hope you're doing O.K. Never had a line or anything fitted, but my veins became really horrible, got harder & harder to get canula in, & to get bloods done etc., so hope line helps you. When I was in for 1st Herceptin, & had to stay all day to be monitored, a man had a major reaction to whatever he was getting & within seconds he was on the floor, nurses & equipment everywhere, crash team in etc., never seen so many staff in haematology at the same time. I was almost in tears at this man dying on the floor in front of me so to speak, but the thing is, within an hour he was sitting up eating his yoghurt !
Shortly after that, the girl in the next chair to me had a reaction, not quite so bad though. I was much calmer then, just quietly moved myself & my cuppa soup out of the way, & carried on reading my book.
All the best
xx

Re: lots of questions .... please can anyone help

Van what a traumatic time you must have had hope the vein is settling I was advised to use Arnica cream on the sore/bruised areas and I think it worked ( did not have a line fitted but on repeated tries at finding a vein to put a cannula in)and on top of that witnessing someone having a major reaction too, must have been really scary all round.Hope you are able to rest up now. Lol Jackie

Re: lots of questions .... please can anyone help

Line fitted..... took two hours.... struggled to find that vein too... now that is very sore...

while there a woman having chemo had a major reaction to the drugs... and how scarey was that .....poor thing

i was ready to walk out....

so heres to tomorrow and jeremy kyle, this monring and loose women!
happy days !!!

Re: lots of questions .... please can anyone help

Hiya Van,

I'm completely with you on this one...I had my 3rd FEC last week and although this is probably my best one so far SE wise, I hate the feeling that I have to go through the same amount again. If we had 5 FEC's then it would be a bigger thing getting through the 3rd, in my head I would be MORE than half way there.

I can't have a PICC line or suchlike as I have a history of Tachycardia, my veins are really hurting but I am hoping they hold out! I hope getting your line in helps you, whatever can help you through this cr*p process I say!

Paula xx

Re: lots of questions .... please can anyone help

Hi Van

I had 4 FEC and 4 taxotere, double mx with lymph node removal on one side and radiotherapy last year. Just 18 months before I'd had a hysterectomy and bowel resection for endometriosis. Some days I didn't know how I could keep going. But the thing is you do get through it all. I tried to keep really focussed on what the treatments were doing ie. getting rid of the cancer.

I did have counselling too which helped me immensely. I did this via the Cancer Counselling Trust: http://www.cancercounselling.org.uk/
I had 9 sessions over the telephone (about 50 minutes each) and they ask for a donation. I can't praise it highly enough. I remember bursting into tears when I made the first phone call to try to arrange counselling as I was feeling so low.

take care and hang in there
Elinda x

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Re: lots of questions .... please can anyone help

Hi Ladies,
I saw a man wearing a t shirt today that made me laugh out loud so I thought I would share it with you! On the front it said

"With a body like this who needs hair" I would have bought it for myself and worn it with pride during the months I was bald (not that my body is anything to right home about)

Sometimes while you are going through treatment it is the small things that keep you going and laughing certainly helped me.

I hope you all like this as much as I did.
Jano x

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Re: lots of questions .... please can anyone help

Hi Van,

I am also waiting for central line (I am having a portacath done) to commence chemo FEC no.2! It's an emotional rollercoster but everyone says having the central line in takes the stress out of trying to find the veins! I wish too, one could just run away and hide but I think it's not an option, BC seems to catch up with you when you least expect it! I am looking forward to the day when it's not on my mind 24/7 and I am not lying there at 3am wide awake again! So many inspiring ladies here and after filling a tesco carrier with my hair this morning and sobbing my heart out, I know I must carry on however hard it may seem. You are not alone, I really feel for you and send a big hug, too. All the best for tomorrow! xxTina

Re: lots of questions .... please can anyone help

oh Van wish I could make it better for you and really hope Thursday passes off better for you. Sending you big virtual hug, it is a long emotional trip but we have to keep going, we owe it to ourselves to get better and get living again!!! I see you on that photo in a fabulous place, looks like a marina abroad somewhere, you must try visualize that and aspire to getting through it and back there again for sun and relaxation. I am visualizing Skiathos for me in the Autumn its a favourite spot and I havent had my honeymoon yet from December due to bringing wedding forward because of diagnosis and treatment intervening, so cant wait to get away.

I have started cycle six out of eight today and undergone radiotherapy and mark-up for my chest boosts of radiotherapy which commence tomorrow, so ever onwards. bouncing off the walls now with all the steroids and just hoping to try and get some sleep tonight. ever onwards and thinking of you and willing you to get through this week.

much love - Carol x

Re: lots of questions .... please can anyone help

Hi Van so sorry to hear you are having such a bad time. This whole BC thing is a b....y roller coaster isn't it And no feeling as you do is in the normal range not childish.. Can't comment on the mirena coilHope the PICC line helps. But have had more emitional se s than physical ones ( or it feels like it. Got into a complete heap and bordering on a panic attack when going for 2rd FEC ( 5th chemo) 1st 3 x MM hadn't worked.Decided I wouldn't survive emotionally ( and I think BCN agreed as she gave me 2 booklets on this ) if I didn't do something so arranged to see a psychotherapist for an assessment and have had 2 sessions with an art therapist since. Not sure about the art bit but it does give me a safe place to talk about the loss and life never being the same again etc etc.Also arranged to have reflexology and find that very enegising.The extreme tiredness I am sure was caused as mich by chronic insomnia as by the chemo as had not slept since late Nov. Had sleeping tablets from GP and 1st 2 gave me 2 x 14 hrs sleeps and have slept OK since without tablets. Hope some/any of this helps. Are you still working? and walking your dog/s? Hugs and Lol Jackie

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Re: lots of questions .... please can anyone help

Hi Van,
Sorry to hear you are having a bad time, are you taking cyclezine for nausea? I found this made me very sleepy so they changed me on to maxalon which worked much better for me. I also had a session of reflexology week 3 as it really seemed to boost my energy levels ready for the next chemo. I hope this helps

Jano

Re: lots of questions .... please can anyone help

Hi Van,
Hang on in there lovey. I found FEC 3 the easiest so far. The SE's were less, I got over it much quicker but am much more tired. I just have an afternoon kip when I need to. You might find having a line makes it less stressful. I had my third chemo through my Hickman line and it was so easy and so less stressful not having to worry about if they could get a cannula in.
I'm desperate to get on with my life too and keep looking at calender checking when it will be all over. I may refuse FEC 6 so its all over quicker, depends on how much difference 1 cycle makes to me.
Big hugs Van
Erica xxx

Re: lots of questions .... please can anyone help

Hello to you all... thank you

completely pants day today.... Veins have collasped in both arms and now I need to be fitted with a PICC tomorrow evening ready for chemo again on Thursday.... then found out I needed 25 radio therapy and not 15 that I first thought...

I am feeling totally flat.... so dont want to have anymore treatment and I know that is being very childish... but yep youre all right I am childish.... I am 40 years old and want to enjoy my bloody life again

Re: lots of questions .... please can anyone help

oops pressed too soon.

Wishing you well Van

K x

Re: lots of questions .... please can anyone help

Hi. Van,

Had 5th of 6 today and found that 3rd was my most emotional and difficult. think some of it was so many people saying that i was half way there. Well I felt actually that i still had half to do !!

4th was probably the best of the lot and will see in next few days how I react to 5th.

Have felt increasingly tired with each one but just rest when I need to and say what the hell to the housework etc.

Have had lots of ups and downs and it is B****Y hard but we will get there and look back in time and know it was worth it

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Re: lots of questions .... please can anyone help

I still have Mirena coil. Had lumpectomy end of March. At post op appointment the surgeon siad to have it removed but breast care nurse said to wait and ask oncologist as there are varied opinions. I'm seening onc tomorrow so plan to ask again. Another thing to do before chemo starts in a couple of weeks...

Re: lots of questions .... please can anyone help

looking forward to the distant memory.....

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Re: lots of questions .... please can anyone help

girls, you CAN do it.......... just focus on the positives, it's medicine that will make you better. I completed 8 cycles and finished November 09 and the last 2 were horrid, just felt completely washed out, but resolved myself to the fact that it was only 6 weeks of really feeling like cr*p. Listen to your bodies, don't push yourselves and it really will soon be a distant memory.
Much love
xxx

Re: lots of questions .... please can anyone help

Hiya Van will be thinking of you tomorrow. I am having my sixth cycle of chemo out of eight starting tomorrow. I found mid way hard and can remember being awake the night before and it freaking me out as the treatment went into my arm via the drip. I think we all just get progressively more weary as it goes along and I found myself almost anticipating the side effects.

take care, hope it goes well for you love Carol x

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Re: lots of questions .... please can anyone help

Hi Van

Sorry your feeling bad i totally relate i have been having a hard time the last few weeks and get no 4 1st TAX tomorrow. I have tried everything this time Acupuncture, hypnosis, eft and Louise L Hay tape. I think they have helped a bit but i am still a bit scared about tomorrow and the following days.

Am going to the Haven also if you have one nearby.

I had the merina coil too and i feel it played a part in this for me i am p+ and E+. My personality changed completly when i got it and had to have it out within 5 weeks, the onc has said there is no evidence which is true but my gut feeling is it did play a part for me.

Will be thinking of you tomorrow Van sending you a big hug.

Lots of love

Jayne

Re: lots of questions .... please can anyone help

thank you for your words of wisdom..... I really appreciate them

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Re: lots of questions .... please can anyone help

Like otheres have said, I found no 4 really hard. That was the one when I started crying whilst it was being. In fact I cried as I walked into oncology. The nurse said most people find no 4 really hard. Probably because you have as much to do as you have already done.
I also found no 5 pretty hard, but no 6 was a lot easier. It seemed to go very quickly getting from no 4 to no 6. I am now 4 weeks post chemo and I almost forgotten how I felt (a bit like giving birth but witout the lovely outcome!)

Re: lots of questions .... please can anyone help

Hi Van

I found the third and fourth round of chemo the hardest by a long way - and had a major wobble - I think most of us have a low point in the middle somewhere. At that stage it seems to be going on forever. Hold on in there - you'll soon be over half way.

finty xxx

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Re: lots of questions .... please can anyone help

I, too, am grade 3 triple negative and had a mirena coil.The hormone effect from the coil is very small and I was told highly unlikely to cause bc. However Triple negative bc is not hormone fuelled. We don't know the cause of it but it won't be the coil, the pill etc.
So sorry you are feeling down. Chemo is rough but you will get through it.
Love Kathy

Re: lots of questions .... please can anyone help

Hi Van

Sorry you don't feel so good it's all ups & downs isn't it ? For me, I remember not knowing whether to feel Oh good, halfway, or Oh God, ONLY halfway. So after this one you'll be past halfway, atleast I hope so, I had 6 altogether so maybe I'm assuming too much.
Anyway just to say I had a mirena coil in for 10 years, removed 2years+ before dx, & onc didn't seem to find that of any interest at all.
Good luck Van, you'll get there.

Re: lots of questions .... please can anyone help

Hi Van,

Sorry to hear that you are feeling quite wobbly with the chemo at the moment. I think it is quiet common to feel like that half way through, I know I did. I found chemo to have a build up of tiredness and fatigue, I was pretty tired by the last one. Best thing is to listen to your body and get as much rest as possible if you're tired. You will get there, I'm a year on from starting chemo and I'm much better now..There is no doubting that this can be a long haul, but it is doable...coming on here really helps on the difficult days...we are all here to listen.

Regarding the coil. There have been lots of discussions on here as to whether the mirena causes breast cancer. I know that it has been mentioned on the leaflet. Being triple negative, your cancer isn't triggered by hormones so I don't think having a coil in would cause it..The coil has progesterone in it..I am positive for progesterone and my surgeon and Onc made me have it removed immediately.

Wishing you all the best for Tuesday, hope it goes smoothly for you.

Fiona xxx

Re: lots of questions .... please can anyone help

Hi Van

Sorry youre feeling mixed up with all thats going on with your treatment plan. Ive used this site loads and I know there will be others along who will be able to help more than me.
I can only say I have still got the mirena coil in and saw some posts on here a while ago about it.
I checked with my GP who said it played no part in my BC. THe hormone in it is tiny aparently. But you may be able to do a search in this forum and see other veiwpoints/comments.
Hope you get peace of mind soon and continue with your treatment without more anxiety.
Best wishes
Cathie

Re: lots of questions .... please can anyone help

Thanks for your comments...

Im just having a down day as its near Tuesday and its making me tearful just thinking about it.....

I still think I havent come to terms with it.... scared of what it may do.... scared of everything....

but thank you anyway... ill ask about mirena coil on Tuesday

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Re: lots of questions .... please can anyone help

Hi Van, I was dx Feb 2009 with grade 2 triple negative. Had 4 ec, 4tax, then mx, then rads. Have had some therapy, some chats with counsellors, but the best is the hyponotherapy I'm having at the moment. There were times for me when I could think of nothing else but the bc, you can get through it. The chemo is tough, but its the best the medics have to treat the bc. Please do keep in touch with people on this site, I found it so helpful and met some wonderful people along the way. It is a journey, but there is light at the end.

Lots of love and hugs

Clare X

Sorry don't know about the coil, never had one, perhaps others have had.

Re: lots of questions .... please can anyone help

Dear Van,

I am sure you will soon get a lot of replies from other forum members, but please remember you can also call our Helpline to talk things over with one of our trained staff. The number is 0808 800 6000. They are open from 9.00am- 5.00pm on weekdays and 9.00- 2.00 on Saturdays.

Very best wishes

Janet
BCC Facilitator

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Re: lots of questions .... please can anyone help

Hello Van, sorry to hear you are not feeling very good. I guess you are just coming up to halfway with the chemo so that is a very big milestone. That is one of the ways I coped with mine (6x FEC). I finished chemo August 09. I cant help with info about the mirena coil but I am sure someone will come along with some info shortly. I found the side effects increased when my blood count dropped so do what you can with diet to keep that up - if it drops too low it can delay them giving you the chemo - it never happened to me but I was terrified it would do which would have knocked me off my path of ticking off each one and staying focused! I also know of other ladies who have had therapy and or anti depressants to help them so dont suffer in silence. All I can say is just bide your time, you will get there and life does get back to some sense of normal. Lots of love to you, Debbie x

lots of questions .... please can anyone help

FEC no. 3 on Tuesday and and so dont want to do it..... it is beginning to drown me with thinking of nothing else...

I have Grade 3 triple negative BC,.....(still cant say the word)

Can anyone tell me if the Mirena coil can cause BC?

Can anyone tell me if the side effects get worse for the chemo.... Week 3 used to be my good week but now im falling asleep....and grouchy?

Is there anyone who has had therapy over this? if so does it help. Not sure I am coming to terms with it

thank you for listening to me