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1st chemo tomorrow!

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Re: 1st chemo tomorrow!

Hi Hayz

Sorry you ended up in hospital but glad you were able to come home. How are you feeling now? has your temp come down? Are they giving you the tum injections to boost your immune system? I have my Tax tomorrow and Im really hoping I dont end up in hospital again. I am starting my injection the day after chemo for 7 days so Im keeping my fingers crossed that does the trick.
Hope your ok and manage to keep out of hospital. Happy New Year to you, lets hope its a much better one for us.
Take care
Love Karen xxx

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Re: 1st chemo tomorrow!

Nightmare - you certainly know how to find them! Love your description of your fellow inmates!

Hope that all you lovelies have a great end to what can only be discribed as a monuMENTAL 2009

I know we'll all be in slightly different positions at the start of 2010, but at least by the end of it we will have beaten the b*gger that is cancer treatment.

Lotsalove to all
xxx

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Re: 1st chemo tomorrow!

Hayz that is a total nightmare and confirms what I feel that going to A&E is pointless and at the holiday time even worse ! can you imagine what Hogmanay will be like ??? I have a dinner invite for tomorrow night and have advised my host (who is a good friend) that if any of the other guests have a cough/cold/wheeze/sneeze I'll toddle off home cause I don't want to risk an infection - she's cool with that.

Hope 2010 is a good one for you and your family - glad you are at home 🙂 x

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Re: 1st chemo tomorrow!

Hey Ladies

Hope you are all well!

Well, the dreaded Tax hit me again last night with a temp of 39& chest palpatations! I gave it an hour, but it was still as high so I called the on call onc in Edinburgh. She called me back and hour later!! and after 3 phone calls had arranged to have me assessed at my local hospital....'just go to A&E. They're expecting you & will take you straight to the on call medic who will assess you'!! YEH RIGHT!!

A&E had no clue who I was! Made me wait 30 minutes in the waiting area before taking me thru & poking & prodding at me, stuck 4 needles in me, gave me an ECG & a chest X ray then 2 paracetamol!! PMSL!...I have to say tho..the noisy drunks & 10 policemen were very entertaining!

I was eventually taken up to a ward 3 hours later....where I was stuck in a bay with 5 coughing & spluttering....and staring!!!.. OAPs.....it took some resistance not to panic & run, but all I could say was 'I'm assuming I'm not neutropenic then???. The nurse was lovely & kept saying that they had no side rooms & that I could discharge myself if I wanted!!??....my husband was half way out the door before she was finished! LOL

I waited 2 hours to see the doc (curtains closed to hide from the staring eyes...the snoring, giggling & grunting from the oldies had to be heard to be believed!!)...and they woke an old lady at 3am to take her for an Xray!! and put all the bay lights on!! OMG! Is that really necessary?? Poor Old dear had to hunt for her teeth!! NO JOKE!

The Doc poked, prodded & tapped...and asked to see my mx scar?? Never had that before! then said that she would like me to stay because of my temp so they could monitor it. I pointed out that I was now day 6 post Chemo & that my neuts could drop at any time & that I'd been told to be careful this week re infection & here she was asking me to put myself in that very situation. She kinda hmmphd & said that they would monitor my neuts. I asked what the oncs view on the situation was & she said 'ooh I don't know. There was no plan of action if your neuts were normal'! I asked if she would mind calling the onc to ask what she thought as I really wasn't comfortable in a room with 5 ill people....she wasn't too chuffed, but trundled off to call the onc.....then came back & said 'The oncologist thinks you'd be better at home!!!' YAY!!!

I'm so glad that I politely questioned the Dr. It scares me that they have so little understanding of chemo patients & their needs!!

...so excuse my big long story, but the moral is....don't be scared to question the Dr's if you're not happy with the situation. I would never have done it if my onc nurse hadn't told me that I can always refer back thru the oncologist no matter what the situation...I'm glad we had that discussion after my last admission!

Take Care Everyone.....lets hope we can all have a fab Hogmany...at HOME!! 🐵

Hxx

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Re: 1st chemo tomorrow!

Hi All,

Karen - just to say i started tamoxifen in 2006 and after a few months of enduring the side effects- no sleep, hot flushes etc etc asked my GP to change to Nolvadex-D (which is still tamoxifen, but by a different manufacturer)and the side effects were reduced almost overnight. Its a more expensive drug than regular tamoxifen, so isnt usually presctibed routinely. Anyway, it worked for me so it may be worth giving that a go. If not, its worth asking your GP to prescribe 10mgs twice daily, instead of 20mgs once a day, to lessen the SEs.

Having said all that - I think you eventually get used to not having quality sleep regularly, as most post-menopausal women do. Tamoxifen did make me put weight on very quickly (about a stone in a month), but after about a year and once id got used to the tamoxifen, working full time again and not being as tired, I went to slimming world and managed to lose the weight fairly easily and kept it off.

It is also well recognised that many women feel very isolated, lonely, worried and anxious when all the aggresive treatment is over, so what you are experiencing is very normal. We all become totally focused on finishing chemo, and look forward to life getting back to normal again once its over - and then we worry about the fact that we are still worried once it is over! I found that everyone else expected so much of me once the chemo finished, and didnt really appreciate that your body needs a long recovery period after all the treatment is over.

Anyway, hope this helps a bit.

Wishing everyone a Healthy and a Happy New Year,

K x

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Re: 1st chemo tomorrow!

Hi All

Sorry to hear Loocie you have yet another side effect courtesy of Tax. Only one more to go (little comfort I know) then hopefully things will get back to normal for you, well as near normal as they can when we have been through what we have. I am due my 2nd lot of Tax on New Years Eve. Went for my blood test today and to see the consultant, he wasnt there so I saw one of his team. I am having the tum injections for 7 days instead of 5 to help boost my blood count so as to avoid another stay in hospital. I really hope it works as I certainly dont want that again.
Hope everyone is keeping ok and side effects are not causing too much grief.
Good luck to anyone being chemo'd this week

Love to all
Karen xxx

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Re: 1st chemo tomorrow!

Hi Helen and all 🙂 I've just had my planning appointment sent to me - I'm going on Feb 10th, so will be a bit behind you. Will be interested to hear how you get on. If you needed to, surely you should be able to get an earlier appointment with you onc - if you could get the secretary's number, I'm sure she would look at getting you an earlier appointment?

I got to see my onc today who has diagnosed Epiphora. Great!!! The ducts that normally allow tears to drain away have closed up (thank you Taxotere), hence the tears spilling down my cheeks! This should (only should mind you) be resolved once the chemo stops. Talk about cheesed off - look good, feel great, I wish! I never realised how much I depended on presenting a normal front, and now (what with recent events) not only do I feel like a patient, I bloomin well look like one too! Rrrrrrrrrrrrrrrrraggghhhh! And breathe...

Hope all you lovelies that were swamped over Christmas are doing OK and that you are perky? And, hope that any other taxers out there do not get this bloomin side effect as it is the worst thing ever :'(

Perky luff to all
xxx

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Re: 1st chemo tomorrow!

JC
I'm already feeling the lack of support having finished chemo - the next appointment with the onc is four months away, I have no idea what will happen with regards to screening or follow ups etc. It's all a bit weird really. And a bit lonely, I've been left with all these ongoing side effects and no support to deal with them. And I start tamoxifen next week... oooer. I only have my GP to fall back on now and I don't think he really has a good idea of what it's all about.

I'm off for my radiotherapy planning this afternoon - am I the first of this group to have done this? I'm not even vaguely worried about it, just the tediousness of another trip to hospital and parking hell, and it's a different hospital from all my other appointments, so I don't know my way around.

I start tamoxifen next week, has anyone else started this? Not looking forward to more side effects on top of the side effects, but suppose that is our lives from now on. Here's hoping it's not as bad as I dread.

I'll let you all know how I get on

Helen.

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Re: 1st chemo tomorrow!

Hi girls,
Hope you've all had a reasonable Christmas, Ive managed to put on all the weight I've lost while on chemo!!!! Not good. Was quite pleased with myself but hey ho it'll have to be my New Years Resolution.
Loocie, I haven't had TAX 2 until Thursday and I've already had pink blotchy hands, went to a rash and started to spread up my arms, really irritated and very dry. Tried various creams and found aqueous the best (I am also prone to excema) now have to use loads of cream as all the blotchy areas are shedding layers of skin. Yes my nails are turning colour and have been very sensitive to hot and cold.
Luckily it is confined to my hands/arms. I have had pink puffy eyes for a few days and my Onc did warn me they would water a lot but only had that for a few days like the runny nose!! What we have to go through, still you only have one more.
Do you think that when our treatment finishes it will be difficult to get back to normal life without hosp appts, injections, blood tests etc? I do wonder how we will cope with the lack of attention even if it was unwanted attention as we didn't really want to be here in the first place. I have asked already to have my other breast removed as I certainly don't want to play this game again in a couple of years. I had a LOT of lobular cancer and that has a slightly higher chance of recurrence although my ONC did say he thought it was more likely to return elsewhere if it was going to. Lets not go there!!!
Helen, I'm glad you are feeling a little better, I still think there has to be someone who can help you, you seem to be getting
no help at the moment.
Good luck girls for those like me due our next cocktail this week.
Keep smiling everyone.
Love to you all,
Jane xx

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Re: 1st chemo tomorrow!

Hi Helen - well you've certainly explored a lot of avenues...seems as though you're getting short shrift where ever you turn. As you say some exercise may help?

In the summer (summer 2009) I ordered a copy of Amoena life magazine and in it was a discussion about tamoxifen. Some of the women there discovered that if you switch brands it resolves problems with side effects - such as the hot flushes. There is a forum at http://www.amoena.com/uk/Forum/DrugTreatments/ForumTamoxifen.htm and you can order back copies of the magazine at https://www.amoena.com/uk/CatalogueRequest/Catalogue_Request.htm Maybe you'll find something you can wave under your Gp's nose? Hope so?

Hope the rest of you are all perky and have managed to have a lovely Christmas time?

I've been beleaguered by side effects from either the tax or the antibiotics - not sure which. I started with a rash on my hand, which then spread to my cheeks. Then on Christmas eve my eyes started pouring as if I was peeling onions. This has got progressively worse (now red and puffy with chapped cheeks)and after spending a couple of hours in our urgent care centre, was dispatched with anti-allergic eye drops. They would've referred me to the ophthalmologists for some steriods, only there were none in! Going to see whether I can get an appointment with the oncs tomorrow.

My finger nails all hurt and are starting to look a bit niccotine stained (nice), and the skin is peeling off my fingertips...even nicer (must remeber not to grate any food as I'm not sure what I'll end up with - yuk!!!) I think it is the tax I'm sensetive too as I stopped taking the abx but still have the problem. Maybe they'll reduce the dose for the last cycle. Did I mention it will be my last cycle...the last one - woo hoo!!!!!

As you can imagine I look incredibly fetching with my bald head, yellow nails, peeling skin and pink, puffy, piggy looking eyes! Seriously doubt I'll meet Mr Right looking like this, hey ho! Still can't taste anything either which is a pain as I really fancy all the lovely goodies that are around at the moment (storing them up for when things get back to normal). Sweet things taste all bitter and disgusting, and savoury just isn't very flavoursome. Nevermind, hopefully it will pass soon.

At the end of the day I know we're having treatment for something that could potentially 'see us off' were it left untreated, but pleeeeeze...give us a break 🙂

Running away now as I've yabbered away at you for long enough.

Big cyber hug folks ((((x))))
Loo
xxx

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Re: 1st chemo tomorrow!

Hi All

thanks for all your supportive comments, it's nice to think that someone out there has some sympathy. I did actually have a good Christmas - spent it with friends rather than family (so much less stress!) and it was nice not having to do the cooking. I went for a five mile walk yesterday - the furthest I have walked since sept, and didn't my feet ache! And I've had my first bath since surgery - so nice (apart from the hot flushes which meant I had to keep sticking my feet over the side to cool down).

Not feeling quite so miserable now but still wondering how on earth I am going to cope.

I've spoken to my oncologist who prescribed the anti-depressants which aren't working and now I don't see him for four months, so no hope there. The bcn was sympathetic but just referred me to the oncologist although I will see her again at the end of Jan. My GP just said, I have to be careful what I can take as I can't have much due to the cancer and tamoxifen and basically I just have to live with it. And I had some counselling and all she said was that I don't have a steady enough mental base to create coping strategies and I just need to be easier on myself till I finish treatment. And the helpline at BCC was very nice and sympathetic but couldn't offer any advice.

So, I don't know where to turn next. I just seems I have to learn to live with no sleep every night and constant flushes for at least the next five years till I'm off tamoxifen - not much of a prospect really.

I've got a chillow but don't really know what to do with it - it's freezing when I'm not having a flush so can't really sleep on it. I've had to get rid of the summer duvet as it's too hot and get my very thin silk blanket out while the OH has two duvet's on his side of the bed!

Anyway, I am feeling a bit more cheerful and am looking forward to my first swim for months sometime this week and maybe back to the gym next week - I think some exercise will make me feel better and I hope I can start to lose the stone I have put on through chemo.

Thanks again for your words of advice and support. I hope you all had a great Christmas and have a good New Year too.

all the best

Helen.

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Re: 1st chemo tomorrow!

Hugs Helen - this is hell - please get some help - all the suggestions are sound love - fed up with sweating too - you must get some help - big big hugs to you and all xxxxxx

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Re: 1st chemo tomorrow!

Hi Helen,

Just wondered if you had spoken to the people at Breast cancer Haven in Fulham. They also have branches in Leeds and Hereford. You can speak to someone on the phone, just google them, it may be worth a call!

Thinking of you
xxx

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Re: 1st chemo tomorrow!

Hi Helen,
I agree with what Loocie has said, you have faced so much and come through it, I can't believe you are getting such little help now. Is there maybe another GP at your practice that you could speak to? Are you still seeing an Oncologist who also may be able to suggest something? I'm so sorry you are feeling like this but you know we are always here for you.
Love and special hugs,
Jane xx

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Re: 1st chemo tomorrow!

Hi Helen, wish I could say something constructive to you. Best i can do is send you a virtual hug ((((x))))

Sounds like things are pants, and that your GP is unable to understand what has happened to your life...but please don't despair as there are others who may be in a position to help. Maybe your breast care nurse can help; a Macmillan or similar team associated with the hospital or even the guys here at BCC? There must be someone that will be able to help you unravel the pickle that life after cancer treatment must be.

For a start counselling may help you to understand what has happened to you ( I'll be blowed if I can figure out what the hell it is we've been subjected to), and to rationalise the scary feelings that the thoughts of returning to the work place must evoke. And secondly there must be other opinions upon hot flushes and any residual long term effects that chemo might have.

You've had nothing but brown, mucky stuff thrown at you for the major part of this year, and you've taken everything and come out the other side. Just when you thought the nightmare was finally over you're being asked to dig a bit deeper and find someone that will help you over this hurdle, but you can do it.

Don't be fobbed off, there will be help out there for you, and don't give up, you owe it to yourself to make sure this period of your life becomes history...which stays firmly in the past!

Hope this doesn't sound patronising, just wanted to offer you something.

Lotsalove
xxx

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Re: 1st chemo tomorrow!

Hi everyone

Just want to wish you all a VERY MERRY CHRISTMAS and a HAPPY AND HEALTHY NEW YEAR. Lets hope that 2010 will be a great year for all of us. We deserve it!
Loads of love to you all
Karen xxxxx

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Re: 1st chemo tomorrow!

Happy Christmas All

hope the celebrations are as good as they can be, what with the se's, chemicals etc. I hope you can all relax a little and enjoy some of the time.

I haven't been on here lately because I am really struggling. I thought having finished chemo I could start looking forward to the end of treatment and getting my life back together. Unfortunately the incessant hot flushes are getting me down so that they have taken over my life and I am so depressed about what the future holds - not about the cancer but about my quality of life. I don't know how I am ever going to have a normal life ever again. I don't know how I will ever hold down a job again. I've had no sleep for six weeks, my GP is unhelpful and basically says 'tough luck' and won't prescribe me any sleeping tablets as he believes I will become dependent on them. Neither anti-depressants nor any of the quackery including magnets and acupuncture are helping and I am at my wits end. I went to the pub on Tuesday and threw up in the car park due to the side effects of the anti-depressants. They must have thought I was some drunken reveller, when I haven't had a drink for months.

I don't think I have ever been this miserable, it's worse than diagnosis or the whole of chemo - at least I had an end of that to look forward to, this has no end. I am not looking forward to Christmas and I am dreading the New Year as I have to start taking tamoxifen which is guaranteed to make thing worse.

I hope all of you are more cheerful than me, you seem to be withstanding the hell of tax very well and I hope you all have a great Christmas and New Year.

Helen.

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Re: 1st chemo tomorrow!

Hi

Just want to wish you all a very Merry Christmas and Happy New year Girls - sorry for those of you being swamped this week - and i sincerely hope your SE's are not too bad and that no one else ends up in hospital !!!!!!!
I asked Dr Dish my onc what % of swampers have sepsis - he said 5% - Funny that so many of us on this thread and from dx May thread have had it!!!!

Got a copy of a letter to my Surgeon/GP/Chemo nurses yesterday stating that I had quite significan side effects on first TAx and he is going to reduce the dose slightly - but if the Se's are significant again he may complete my treatment with weekly Paclitaxol (less harsh). Not keen on that.

I will be swamping next Wed 30th along with a few more of you - penultimate one!

Rachel (Mummytumbles)from dx May thread has arranged a weekend at Centreparcs Nottingham for the weekend 15th - 18th Jan 2010 there are 19 attendees at the moment but due to someone unable to go I think there is still space for one more if anyone is interested - the cost is @ £90 for the accomodation - need spending money for food/meals/activities (if you have the energy). If any of you are interested please let me know by personal message or on here - it should be a fabulous time - meeting other BC ladies LB1966 Lorraine is going and Al (cant remember her alias) - also Lulu - Sheenagh - Caro - Sharon (smallstar) Biggles (karen) - Dawn - Pauline and more. We have an executive new 2 bed villa and the remaining space is for a bed in the twin room.

Merry Xmas Lyn xxx hugs xxxx

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Re: 1st chemo tomorrow!

Hi

Just want to wish you all a very Merry Christmas and Happy New year Girls - sorry for those of you being swamped this week - and i sincerely hope your SE's are not too bad and that no one else ends up in hospital !!!!!!!
I asked Dr Dish my onc what % of swampers have sepsis - he said 5% - Funny that so many of us on this thread and from dx May thread have had it!!!!

Got a copy of a letter to my Surgeon/GP/Chemo nurses yesterday stating that I had quite significan side effects on first TAx and he is going to reduce the dose slightly - but if the Se's are significant again he may complete my treatment with weekly Paclitaxol (less harsh). Not keen on that.

I will be swamping next Wed 30th along with a few more of you - penultimate one!

Rachel (Mummytumbles)from dx May thread has arranged a weekend at Centreparcs Nottingham for the weekend 15th - 18th Jan 2010 there are 19 attendees at the moment but due to someone unable to go I think there is still space for one more if anyone is interested - the cost is @ £90 for the accomodation - need spending money for food/meals/activities (if you have the energy). If any of you are interested please let me know by personal message or on here - it should be a fabulous time - meeting other BC ladies LB1966 Lorraine is going and Al (cant remember her alias) - also Lulu - Sheenagh - Caro - Sharon (smallstar) Biggles (karen) - Dawn - Pauline and more. We have an executive new 2 bed villa and the remaining space is for a bed in the twin room.

Merry Xmas Lyn xxx hugs xxxx

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Re: 1st chemo tomorrow!

Hi girls,
Hope you are all ok and I wish you all a Happy Christmas and hope Santa brings you something special!!!!
Last bits of shopping to do tomorrow and then what is not done is tough.
Take care girls, don't work too hard.
Love to you all,
Jane xx

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Re: 1st chemo tomorrow!

Hi all - this snow really has scuppered things hasn't it? I walked home to my house yesterday (I used to jog it in about 4 minutes, so no great distance)and it was exhausting. Had no idea it would nearly finish me off, just thought it would be nice to get out into it...wrong!!!

Hope you're all getting on OK and that the SEs aren't getting in the way of your Christmases? I've managed to get a reasonable Christmas together, but not quite the same as I normally would do. Was a bit frustrated by this yesterday, but am more resigned to the idea now.

Meeting my girlie chums for lunch tomorrow which will be wicked - what I've been looking forward to all week 🙂

Side effects haven't been too mental although the tiredness is something I'm struggling with. I guess I just need to get used to the idea that I'm going to need a bit of building up.

Keep perky and well...only two sleeps left now - hope that those of you being swamped manage to enjoy Christmas. The fact that you're that much closer to finishing is cold comfort when you can't get stuck into the pies ;'(

Lotsalove and luck all
Loocie
xxx

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Re: 1st chemo tomorrow!

Hope everyone is as well as can be and has a nice Christmas!! We should all be proud of ourselves!

Here's to next year!!

xx

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Re: 1st chemo tomorrow!

Hey All

Hope the weather where you are isn't as bad as here!

I'm s'posed to be at the hospital this morning to get my bloods done before my chemo tomorrow, but the schools are closed & there's no way anyone is getting out our street in any kind of vehicle!

They're happy to do my bloods first thing in the morning, but it means I'll be at the hospital a few hours instead of just an hour :o( ....they did offer to delay my next Tax until the new year, but I wanna get it over with asap!....better get my winter walking boots looked out for my walk in the morning 'cause this snow isn't about to ease up anytime soon....I just hope I can get to the supermarket before Christmas or it'll be frozen chips & out of date milk on Christmas Day! LOL

...why am I LOL???....it's so not funny!!! :o/

Hope you're all well & have a fab Christmas xx

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Re: 1st chemo tomorrow!

Hi Karen, I am a week behind you and have my last TAx on the 7th of Jan. I asked my onc when the RT would start he said usually 4-6 weeks later. I aksed if there was any reason not to dealy it as it would fall over half term and the children have had a really rough time I would rather not be going everyday to to the hosp a two hour round trip. He said that there was not medical problems delaying it and that sometimes with people in poor health they can delay for up to 3 months and it has no effect on the outcome.

RP

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Re: 1st chemo tomorrow!

Hi girls,
Hope you are all feeling ok.
Karen, we seem to be on a par here, my next TAX is on new years eve and then around the 21st Jan. My ONC told me I would get a 4 to 6 week break to build up before starting Rads. I have to see him on the 30th to discuss Rads.
I hope I never have to have anything in my foot, doesn't sound like fun. Sooo hoping my veins hold out for last two chemos.
Good luck anyone still having treatment this week and hope everyone else keeps well.
Love to you all,
Jane xx

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Re: 1st chemo tomorrow!

Hi Hazel

I too had to have blood taken from my foot, never again! It was so painfull and I have a high pain threshold! I dont know if it was the doctor who did it but its not an experience I want again. I have to see the consultant (Mr Happy - not) on the 29th December I am going to beg and plead for something to prevent this happening again. I dont know if they can give me something but, if there is, I want it! I hope you are feeling much better now and you are able to enjoy christmas. My last chemo will be on the 21st January. My next one is on New Years Eve depending on bloods etc. Im hoping I am able to have a bit of a break before I start radiotherapy but not sure if you do or not.
Hope you keep well Hazel. Take care of yourself.
Love karen xx

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Re: 1st chemo tomorrow!

Hi girls,
Hayz glad you are back and Karen sorry to hear you have been in hospital too. I wonder if the antibiotics I was given to take after 5 days helped with my bloods (even if they did give me that horrible thrush). Because of them I don't have to have a blood test halfway through like I did with FEC.
The oral suspension has at last kicked in today thank goodness. I can actually eat something other than lukewarm soup!!!
Don't fancy having the needles in my feet or thigh, do hope my veins hold out for my 2 remaining cocktails.
Take care girls, only 4 more sleeps til Christmas!!! Scarey!!
Love Jane xx

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Re: 1st chemo tomorrow!

Ooh...forgot!

Jane, a friend of mine had a double mx & has to have everything in her feet/thigh!

Not my idea of fun...had to have blood taken from my feet when I was in hospital last week....bleedin Doctor made a right mess of my good arm attempting to put in a venflow (tried 5 times then I refused to let her near me again!)...it was such a weird feeling, like someone was trying to give me a dead leg!!

Hxx

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Re: 1st chemo tomorrow!

Hey Karen

Looks like your having the same problems as me with Tax. I managed to escape my wee hospital side room last week....wondering if there's anything at all we can do to help our poor blood to recover more quickly! I don't fancy a repeat of my hospital stay after each round of tax either!! Talk about bored stiff...and I didn't even feel unwell, which made it more unbearable!

I have my blood tests on Wednesday morning, prior to my next round of chemo on Thursday...fingers crossed my neuts are up 'cause I really don't want any delays..my chemo doesn't finish until the start of Feb as it is!

I'm still dead jealous of the lucky ladies who are finished after number 5 & those who are heading towards their last one.....This'll be 6 of 8 for me....only 2 more after this one!! WooHoo!! Can't wait for it to be over!

Hope everyone is well & has a SE free Christmas!

Hazel xx

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Re: 1st chemo tomorrow!

Hi All

Hope you are all ok and not suffering too much. Have been in hospital since Wednesday, was admitted with neutropenic sepsis. High temp so rang chemo ward, they told me to go up to the hospital had a blood test
blood count was non existant (and that was with tum injections) Put on antibiotics then had to have blood transfusion! I thought tax was going to be hard but I didnt realise it was going to be this bad. Got to go back in on Monday to the chemo ward for more blod tests not happy with my last lot of blood results. So fed up. Have got 2 more tax to go and if I thought this was going to happen again I would give up. Take care all.
Love karen xxx

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Re: 1st chemo tomorrow!

Hi girls,
Had a few bad days with this oral thrush, OMG it is sooooo painful. Have tried the chemist and now the doctors and waiting for the Nystatin oral suspension to kick in. I have not cried so much since the chemo started. sobbed in front of the neighbours, the doctor, on the telephone, on the computer, watching tv!!! What a wuss. I've going from hot flushes to shivering fits where I am so cold I go to bed almost fully clothed. And its freezing outside, we have about 4" of snow and more due. Thank goodness I have nowhere much to go.
I didn't know we could have anything put in our 'bad' arm , wonder what happens if you have a double mx with any nodes removed? What happens then?
Hope you girls are all ok,
Love Jane xx

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Re: 1st chemo tomorrow!

Hi Everyone,

Merry Christmas!

Had my second FEC this morning - so far not feeling too bad - but there's still time! Has anyone been brave enough to use their 'bad arm' yet for chemo? My veins are so much better on that side.

So 2 down 4 to go - not looking forward to last 3 of Tax, but hay ho we need to get on with it.

Best Wishes. Carolx

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Re: 1st chemo tomorrow!

Happy Christmas to you too Kath.... enjoy your chemofree time!!!

Sarah xxx

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Re: 1st chemo tomorrow!

Hello everyone, just writing to say I hope you all have a good Christmas and Happy New Year. Those who are finishing, well done, us lot coming behind, chin up, if the others can do it so can we.
It's going to be about April when mine finish. SE's have abated since Tues, mouth still a little rough, I found blackcurrent/liquorice sweets ( Asda) help with nasty taste
Off to Cornwall tomorrow as far as we can get from chemo great.
Take care, thinking of you all
Love Kath

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Re: 1st chemo tomorrow!

Hmmm magnets in your pants, now that sounds interesting - if that's the right word? Must google it to see what it's all about!!! Fascinating the range of subjects we get onto isn't it?

It's getting kind of exciting now what with people finishing their chemo. Hopefully those that are still on their journey can take some strength from those that made it through? It is pants, and exhausting, and debillitating, and undignified. Ultimately though it is do-able and will have a massively, positive impact on our futures :0

i'm now day 5 of second Tax and am doing ok - touch wood! Got some knee pain and am weary but at the moment, that's about it. Just taking things really easy as I want to be able to play next week, so focussing on building myself up. My mouth is a touch furry but nothing like last time, and my belly is much more comfortable...long may it last, purleeeeeze!

Like Lynn says Sarah, the injection is quite straight forward and will be well worth it

Keep perky and warm my lovelies xxx

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Re: 1st chemo tomorrow!

Hi Sarah

My husband did it - was really easy - just squeeze a lump of fat around tummy - look away - and he jabs it in - job done.

On last two FECS i was on granocyte injections for six days from ay 5 and they were awful as you had to mix up the compound before doing - very complicated - old chemo unit did not have license for neulast - i just could not stick the needle in myself - if you're worried will nurse come round - or you go into surgery/hospital?
Lyn x

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Re: 1st chemo tomorrow!

Hi all,

Still feeling really annoyed this morning that I never made it to no4 yesterday. Although I am pleased that they have a cut off point, wouldn't want to get poorly unnecessarily!! Especially as my youngest has a horrendous cold this morning (typical start to Christmas holidays!)
Also I've been taking the Maunka honey....£20 for a small pot....not sure that was money well spent!!
I'm so tempted to give up after 4, I really hate going to the chemo sessions, although all the nurses and my onc are really nice. The way it is making me feel is not good!!
I'm also not sure if I should be going out and about this week now.. if my bloods are low then i'll be prone to catching something...but then I was out all last week and I didn't!! Oooh!..this is just so confusing!! My white blood cell count was 3 and needed to be at least 3.5 to proceed!
I really need to snap out of this stoppy mood, before all my family fall out with me!! Plus, I have a lovely purple hand where the nurse pulled the needle out of me...ouch!!

Gemjunkie...do you do your neulasta yourself or get another to do it??

Take care all,
Sarah xxxx

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Re: 1st chemo tomorrow!

Sarah

the four cycles of chemo being enough for me really only applies to my sets of potential benefits so I think it's different for everyone! I took my onc's advice. I know what you mean about hating going to the ward - just being there made me feel nauseous.

I am sooooo glad I am not doing Tax, it sounds horrendous with everything you are all going through. I hoe you all continue to cope with things in the best way you can.

Loocie, I was reminded about your 'licking a lamppost phrase' this week. I have been taking everything I can find and which is allowed to help me through the hot sweats, which so far includes: anti-depressant vanlofaxine, sage tablets, zinc, magnesium and vitamin B6 tablets, starflower oil, oil of evening primrose oil, acupuncture, and to cap it all, I'm sticking magnets down my knickers. Honestly, I think I'm so desperate I'm falling for all the quackery that is out there,

The magnet thing is something called a ladycare magnet which I read about on some of the other threads - some people swear by them. Anyway, as Loocie says, I'll even lick a lamp post if that's what it takes.

So last night I had the first good nights sleep in 5 weeks, the hot flushes haven't gone away (I'm having one now just sitting here typing this) but they seem to be more manageable or I'm just getting used to them. Don't know if it's due to any of the above so called cures or just coincidence or because I took a large slug of night nurse before going to bed last night lol.

My GP won't give me sleeping tablets as he says I'll get a dependancy problem. Now I've got to work out whether anything's doing any good, I haven't told the OH about the magnet yet but sure he's going to laugh his socks off as I also wear it in bed at night, so he's going to spot sometime soon.

Oh we can but laugh. I'll laugh more when this cold goes, never seen so much gunge come out of a nose.

Keep smiling

Helen.

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Re: 1st chemo tomorrow!

Hi

Trumpet - congrats for getting through your chemo still entertaining the masses - what a relief for you - must feel lile a lottery win, except for the dreaded pig getting hold of you ruining your celebration!

Loocie - hope all the lamposts round your parents are safe and you are not in deep tax sh*te this week.

Jane dry skin may be a se of chemo/tax!!!! My onc gave me vitamin B6 (prescription version)and it has helped.
Have you got difflam mouthwash? - ask doc - if thrush then there is a drug - or nystatin emulsion to take.

Sarah - The bloods low is the neuts not recovering naturally during 3rd week (part of bone marrow/white cells that fight infections) and if you have the chemo then they will go lower and could be dangererously low - esecially if you get an infection - the neulast is great - one injection and the neuts are replenished even though the chemo then attacks them - mine were really high on Mon after injection last Thurs. I was put back a week after first and second chemo's - know what a disappointment it is - I am a whole regime behind now lol last one on 20th of Jan instead of 5th!!!!

I am a bit of an 'expert' as I have had the full set of SE's on both FEC and TAX so far = except the aches and pains - which i can only put down to the Bowen therapy which has helped my skeletal/muscular sytstem enormously.

Saw Dr Dish my onc tonight and because I have had such a nightmare with first TAX he had 3 choices for me: (He says all my se's were normal but extreme and that i am supersensitive - he is going to increase period of time on steroids so that i come down slower. May help with the madness).

Change to sister drug TAXOL which is not quite so nasty
Have weekly chemo injections- smaller doses!
Keep having taxotare but reduce the dose slightly

Have opted for no 3 as I want to get away for the weekend 15th Jan next one due on 30th so hopefully ok by 15th.

Feel like I am starting to crawl out of the pit of despair now and will try to do SOMETHING tomorrow.

Hugs to all of you xxx Lyn xxxx

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Re: 1st chemo tomorrow!

Hi Everyone,

Thanks for the well wishes! Yes, i am growing a snout as we speak, armed with tamiflu and a duvet, but really compared to chemo side effects its a nice break!

Sarah, it must be so annoying to get all prepared and then turned away that's awful. I mentioned i previous posts i took that stupidly expensive 'lifemel' honey all the way through and my bloods were always good, i didn't need any injections or anything. Think they were 6.2 at the last one, not that i understand any of that!

I agree that it's the psychlogical thing that is really hard about it all! I was turning into a bit of a fruitcake having strange reactions to anything that reminded me of the whole hospital and treatment thing. I just can't belive it is all over, it's not quite sunk in... normal life, not grouped into 3 weeks! It's going to be amazing and for all of us soon too.

Back to work for me on Monday, if i don't catch another strange disease for the last two weeks of my show and then a holiday and radiotherapy. That's another thing to experience!

Well, hope everyone is thinking positively about the good bits and making the most of them.

Keep going xxxx

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Re: 1st chemo tomorrow!

Hi girls,
Sarah, sorry to hear your news, hope you are ok Trumpet, glad most of us seem to be on the up at the moment.
Well it is snowing here in Surrey and cos I am not going anywhere I love it!!!! Wouldn't it be lovely to have a white Christmas. Can't remember the last one.
Can anyone tell me if a really sore mouth, like you've bitten your cheek 100 times and is spotty is oral thrush and if so what is the best thing for it? OMG it is so painful and driving me mad. All the other aches are miniscule and my fingertips aren't so sensitive but I have red blotches on my hands which are a bit itchy in places and my skin is very dry. My antibiotics finish today and hopefully my sensitive stomach will improve. I can't wait to stop taking all these tablets, some of them are huge and just won't go down.
REally must go and write the xmas cards, is it too late for second class post does anyone know??
Love to you all, keep smiling,
Jane xx

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Re: 1st chemo tomorrow!

Ooooo that's harsh Sarah, sorry to hear it, but playing devil's advocate, it is better to defer than to put yourself through something which isn't going to do you any good. I have to say it was my worst nightmare that this would happen to me, and do really feel for you. Also, having to shelve my own christmas plans cos I was in hospital makes me empathise all the more with you. Hope that you manage to get a good week in this week as you build yourself up for Tuesday - and you never know the SEs may be kind to you - here's hoping.

Trumpet, bet you're delighted you don't need to be swamped any more -guess you'll be partying once the oink, oink fever (or whatever it is) has gone?

Had my acupuncture just now so nicely chilled - installed at my folks and just waiting for all hell to break loose!!!

Catch up ron me hearties
xxx

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Re: 1st chemo tomorrow!

Hi all,

How are you Trumpet, hope it's not swine flu!!! How unfair!!!

I went in for 4th FEC today, after bursting into tears as I walked through the door....can't bear to be there..it's completely phycological as SE's weren't too bad last time either. I'm on anti-biotics for an abcess on my tooth, which nurses said was fine!! But when they did my bloods they were too low to do chemo today!!! So have scheduled for next Tuesday!! Which really mess's up Christmas plans and Visitors for new year. I guess I shouldn't have been so confident with my planning!! Set myself up to fail!! Really cheesed off with the whole thing to be honest!!

Interesting what you say about 4 lots being enough!!! Why do they put us through 6 lots then???? torture...mentally especially.

What are the reasons for bloods being low?? Or is it just one of those things?? ONC is going to give me Neulasta injection to do next week, he said hubby can do it for me!! (yeah right!)

Arghhhhh! I'm really so annoyed to be put back a week, when I could have been sitting here now with no4 under my belt!!

Hope everyone else is doing great.

Sarah xxxxxxxxxxx

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Re: 1st chemo tomorrow!

Well, these last few weeks have been a bit mental haven't they? What a bunch of rascals we are eh?

Can't believe what you've had to put up with again T, sounds like your first FEC all over again - with additional piggy pain thrown in for 'good' measure!
Had quite a nice day yesterday and feeling kinda human today, but know the SEs are just around the corner waiting to kick in. Can feel my muscles getting a bit achey, but so far no sign of the dreaded breeze block belly - could be to do with the fact that I'm only taking ondancetron and none of the other anti sickness.

Off to write some jolly Christmas cards now, which are so dreadful I'm ashamed to send them...still, better than nothing.

Keep shinning like the stars you are,
Lotsalove to all
Loo
xxx

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Re: 1st chemo tomorrow!

Well done Trumpet

I chickened out after four - also with the agreement of my onc - he suggested it! Apparently you need to do four to get most benefit, anything after that is just topping up.

Join the recovery club! I've also got a horrendous cold - disgusting stuff coming out of my nose, but think it's just a viral thing, nothing nasty.

It seems that we get through chemo and our immune systems are so low we get hit by every bug going.

hope you feel better soon!

Keep going everyone else, nearly there now.

Helen.xx

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Re: 1st chemo tomorrow!

Hi!

Hope everyone's ok. Sounds like everyone has been having a rough time. Nearly the end now!! Just a quick one cos have been on the phone to hospitals all night. They think i may have swine flu, will find out tomorrow, don't feel too bad, just a really high temperature and runny nose.

Anyway, just wanted to let the 5 Fec'ers that i am stopping after 5 with full agreement from onc. I spent 2 nights throwing up in hospital last week after last one and phoned up and said i oulcn't face another 48 hours constant vomitting and was it worth it for extra 1 treatment messing myself up mentally and physically. He said there is no clinical evidence to say 6 is any better than 5, they know 3 or more is better than less but 12 is no differnet to 6. i hope that makes sense!!

So if anyone else has been hit badly by 5, ask!!

Just wanted to pass that on.

Lots of love to everyone and hears hoping the piggy stuff goes away

xx

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Re: 1st chemo tomorrow!

Hi Kayteedid - had a brilliant night , ot til 12.12am so fet wuite normal. Have managed on half dose of antisickness tabs.(that was to stop contipation!) and it worked. Moved onto heartburn and quite tired but out tomorrow night again - am making the most of being so well. I have been very lucky. Hair dropping out is driving me nuts, sick of hoovering the bed but go for wig fitting Thurs,. Just being trying to hang on to some until I go out tomorrow then will just start combing everyday and put up with it falling out. At moment the hair thing is the worst for me but my friends are all able to laugh with me and gibve me support.Did not realise how good friends and collegues they all were. Hope you have a fab Christmas and New Year to get you ready for the next one .
Best wishes to everyone, hope you are all coping well. Love Marli.x

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Re: 1st chemo tomorrow!

Hi everyone feeling more in the land of the living today, still one goodish and one bad so should be able to deal with anything now especially with all your help, thanks.
Marli how you doing did you enjoy your curry? my next is 4th Jan as they're closed 4 days over Christmas and New Year.
All the best everyone. Love Kath XX
Loocie hope your home and feeling better X

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Re: 1st chemo tomorrow!

omg omg omg - glad i am not the only one losing it on TAX - (sorry ladies dont really mean that) no siuns probs and no aches yet - day 6 but the night stalking and screaming abdabs recognise big time -
i took 1 - 7.5 mg zopicone at 3am and slept until 8 am before waking in a cold wet towel! still comatose but awake.

Still very very groggy today but not capable of doing anything - even write a Xmas card!

Think TAX is a bit of a mixed bag and we need to go back to old threads to make some sense of it.

Hope you will survive this one better Loociex

Dawn you are going through hell too babes - the lack of sleep and sweats are whats doing me in - but also nooooo energy at all.

Feeling a bit better today as I have my son visiting - cheered me up to have some company -just hopig for more improvement daily - see Dr Dish the onc tomoro night! xxxxxxxx

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Re: 1st chemo tomorrow!

Hi all, only just back from secon tax - bloomin long day!!! All Ok, but have some news on things to help with SE's, so I thought I'd share.

The onc says that it is OK to take Aloe Vera, which should help with skin and any gut discomfort. And, it is OK to have the probiotic drinks and yogurts to help with managing thrush and the constipation / runs things.

He suggested taking 10ml of lactulose whilst taking the ondancetron to stop the constipation starting, but to knock it on the head once you stop it, so that the runs don't kick in. He suggested either oil of evening primrose or sage tablets for the hot flushes.

Finally, he recommended mouth washing with corsodyl from day one, for about a week to stop the fury tounge, burny gullet thing from starting. All sounds good to me, and this is what I shall try for this cycle, but the proof will be in the pudding...let you know

He did say that the first Tax after FEC is normally a killer, and that it does get better, so I've got high hopes for this one. Been given antibiotics to start on day five in the hope of keeping my line free from bugs.

Hope that you are perky - off for a chill out now
Lotsalove to all, and a positive big hug to ya
xxx