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anyone starting chemo in August?

Re: anyone starting chemo in August?

Hi ivorymummy To be honest thick I may be lol but I don't know what FEC means I'm on docetaxel, herceptin and pejeta that the new drug that my onc had to apply for funding for as its new and not an nhs drug Having 6 chemo but after that is finished I will carry on going to hospital every three weeks for as long as the other 2 drugs keep the beast away months years no one knows, it's how long is a piece of string saying hope all hope you and Jacquie and all the other girls that ate up tomorrow. Minimal se,s xxxx rose

Re: anyone starting chemo in August?

how you feeling Gilly??

I was exhausted today but have got better as day got on.

Not liking this cummulative tiredness lark

Sam whats status on boob???

Re: anyone starting chemo in August?

Julie do try and massage the underarm and back of it when you can, it definitely helps to bring back the feeling. The sunburn will go but the numbness wont. I used to massage mine in the bath. I had horrendous cording too from day 3 and it took 8 weeks to go, including physio. It is still a bit tight but if it never gets any better now I do have full use of my arm, just numb in armpit  xxx

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Re: anyone starting chemo in August?

LynnK I am doing 8 cycles with a canula as my HA don't do PICC lines x

Re: anyone starting chemo in August?

good luck to all of you who are up tomorrow whatever your bar names may be.

got a feeling Pip is in September though as she is in the Sept stars group

 

Gotta get one of those t shirts Lynsey they are brilliant

Julie the sunburn feeling does subside but the numbness lasts longer.  If you feel with ordinary exercises not doing enough see a physio they will give different exercises and massage with coco butter or bio oil is another good one

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Re: anyone starting chemo in August?

Thanks Meg, that's reassuring. Jxx

Re: anyone starting chemo in August?

Sorry didn't realise what you were saying, I get it now!!! Hope all goes well for you tomorrow xx

Re: anyone starting chemo in August?

Hi Julie66, sorry to hear you are still suffering, I know it does take a long time for everything to heal up and feel less sore it took me around 8 weeks to be less sore, but it is so annoying , you will get there soon. take Care Love Meg xx
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Re: anyone starting chemo in August?

Hi Coco, I don't mind at all being Octopussy.  I just meant that Jacquie and I are on our 2nd round, whilst as I understand it, the others are on their first.  Thought that was the idea behind the names??  Otherwise you'll always get different groups overlapping, won't you?

Re: anyone starting chemo in August?

FEC-T #1 day 9

 

Oooh er ..... chemo brain is hurting trying to get round the new site!

 

Thanks to all you lovely ladies who post so regularly. The 'invisible' support is fantastic & there's always something to make me smile.  Hope everyone is doing OK.  Day 9 for me & I feel almost human - Woo Hoo ! Had quite a come down from the steroids, bad bone ache from the injections, fatigue, sore mouth, headache, insomnia & now itchy hands(?) but it is definitely doable.  GP & BC nurses have been wonderful.  Have survived so far on peppermint tea, ice lollies, baked beans & melon .... not sure how healthy that is but it has worked for me.

 

I have been interested in hearing about all your picc lines .....I was wondering if anyone knows if  it is possible to do all 6 courses via a cannula in the hand? No one has talked to me about a line as I have "good veins" although not sure how long that will last!

 

Good luck to everyone this week - keep well. Lynn.

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Re: anyone starting chemo in August?

I'm now 5 weeks post mx and removal of 16 lymph nodes and don't know whether I'm being impatient but I'm still so stiff! In fact, I'm sure I'm stiffer now than I was at the start but do exercises every day and I know I've had problems with seromas and infections but arm pit is still so painful at times and arm still sensitive although at least not as numb as it was. Will this get better or might I be stuck with some discomfort for ever?

Re: anyone starting chemo in August?

Hi Ivorymummy, there are actually 8, of you tomorrow so I suggested the name of Octopussy for you all, hope you don't mind?! Thinking of you tomorrow. Meg xx
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Re: anyone starting chemo in August?

Okay, sorted out the order of messages on the forum, and have bookmarked this forum, so hopefully, it will always take me to last unread post...we'll see.  Now got to work out how to access the forum on my phone.  Can't say I'm over-impressed (sorry, BCC!), but I guess it's like anything new.

 

Well, I had my second blood test this morning to see if my WBCs had shot up.  Spend all day on tenterhooks waiting for THAT phone call, and (drum roll please) it DIDN'T COME!!  Yay!  Means I am back for FEC 2 tomorrow (unless GP didn't send the blood off, or hospital forgot to call, or any one of a numebr of disastrous situations.  Not that I'm pessimistic, you understand, just realistic!).

 

Rosie - do I recall that you had FEC 2 today?  Hope it went well.  Does that mean it only Jacquie08 and me tomorrow for 2nd round?  Could we be the Three Silly Twerps?  (The joke being that there's only 2 of us?)

 

Anyway, holding virtual hands with all up tomorrow. xx

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Re: anyone starting chemo in August?

Hi all

 

Hope I'm doing this right as like everyone else I'm a bit confused about the new forum!

 

Just wanted to say good luck for tomorrow to Venice25, Lynsey44, Jules06, Nichola6, Pips64, Ivorymummy and Jacquie08.  Personally I love the new name.

 

TW

 

Re: anyone starting chemo in August?

Well i like both names for our group heading to the bar tomorrow but as we are now 8 i think Octopussy is good!

 

i was just off enjoying some time with my OH and best friend and her family feeding the ducks by the lake near my house its been a lovely evening. Am going to go get my stuff ready for the first one tomorrow im very nervous now!

No chezza our last messages seem to have disapeared 😞 so i didnt get the last reply! here is the link to the t-shirt i sent you http://www.cafepress.co.uk/mf/53947076/yeah-fake-breast-cancer_tshirt?productId=529295244 it is a quality top and they have some other really good ones on there! i think when i do race for life next year with my best friend we will order some tops off there!

 

Re: anyone starting chemo in August?

Hi Maisie's fine after second session at the bar today took anti sickness tab as soon as I got home I've a little indigestion so have taken the new tabs pescribed so hope that kicks in soon other than that feel fine. Hope everyone is having minimal se,s xxxxx Rose

Re: anyone starting chemo in August?

Glad to see you back Angie from the bar and hope you stay ok and don't suffer. Hope all Maisie's are doing ok this evening. had my first Denunsomab Injection today, it was a very surreal experience but all ok, at least I can say I am having some treatment now!!! Good luck Octopussy group at the bar tomorrow, thinking of you all for a smooth run. Xxx

Re: anyone starting chemo in August?

Julie66 don't worry if your September you can be a star AND a Maisie ...twice the fun xxx Barbs

Re: anyone starting chemo in August?

Good luck to all ladies at the bar tomorrow.  Hope all goes smoothly and minimum se's.

 

Just been reading about nurse not taking blood from picc line.  I thought that was one of the advantages of having a picc line, having blood taken from it?  When the district nurse comes to me on Monday 2nd Sep (day before next chemo),  I have been told she will take blood from the picc line.  I guess I will now have to wait and see if that does happen.

Re: anyone starting chemo in August?

We will expect you to be shaking maracas in Butlins Chezza!!

Re: anyone starting chemo in August?

Gilly with you there Hun xx hope we feel better soon. Can't do much with this forum I think I'm missing all latest s posts. Hope everyone's ok , luv to all Maisie's xx ju

Re: anyone starting chemo in August?

Managed to find thread and changed avatar, I think? Also changed posts to how they were before. Agree with many of you that it not showing unread posts is a pain as I pop in and out during the day. Have had a lovely day out with family and now off out for meal too, living it up while I can!!Glad to hear those of you recently dunked are back ok. Jacquie, sorry to hear cold cap hasn't worked for you, I've still got mine but it is only day 9 for me. Hope everyone a good night with minimal se's. Bev xx

Re: anyone starting chemo in August?

Have changed my avatar to these as  I used to have a nice pair of marracas!! Ay caramba!!!

Lynsey if you get chance post that link of the t shirt to the forum its quality

cheers Meg just seen message pop up

Re: anyone starting chemo in August?

No it didn't will PM you address again xxx

Re: anyone starting chemo in August?

Glad everyone has been finding us alright on this new "improved" forum, hahaha!!

I have had a day where I feel like I am wading through cement and weigh twice my usual weight, if anyone knows what I mean? A bit headachy but just heavy is a good word xxx

Re: anyone starting chemo in August?

sorry that was Jill wasnt i not lols you are both giraffest am confused with everyones avatars!!!

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Re: anyone starting chemo in August?

Tolliebelle (Jill) I was told by my GP that they won't take bloods from my PICC line as there is a risk of diluting the sample with the saline wash and therefore affecting the results.

Penn x

Re: anyone starting chemo in August?

yes lols levo ones worked great for me but can make you drowsy which is why they say avoid driving

personally after the steroid crasha nd insomnia I welcomed the drowsy feeling plkus they stopped me being sick.  I have a supply of them in now for next few days just in case 

Re: anyone starting chemo in August?

ah Meg all my pms have gone from last few days

can you send me your address again

cheers

Re: anyone starting chemo in August?

ha ha genius Meg

Meg did my pm come through to you before??

I sent some before I realised it had all changed.

Re: anyone starting chemo in August?

Evening Maisies

 

I phoned the triage this morning ours is a pager  was answered straight away. They were very thorough! I have been given Levomepromazine? I have taken one and so far so good but this did happen with the cyclezine so will wait until at least tomorrow.

I have a picc line and nurse wanted to take bloods today but instead of undoing all the sticky plaster she used my hand???? And has blown the vein!!! I now have lovely swollen and bruised hand!

Chezza these were the ones you said worked for you I was told not to drive??? whilst taking them were you told this? How long did you take them for?

Hope everyone is coping OK Rollercoaster glad you are feeling bit better.

 

Good luck to all attending the bar tomorrow

 

Jill xx

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Re: anyone starting chemo in August?

Coco (Meg) - Octopussy is a great name!  Those on Friday 23rd do you want to change from Magnificent 7(+1) now that there are 8 if you?

Penn

Re: anyone starting chemo in August?

Hi Penn pity they couldn't have been called Octopussy, those for tomorrow, such a large group! Xx

Re: anyone starting chemo in August?

Hi Maisie's how confused are we all?!!!!! I think it's going to be hard to get our head around the new forum but we will and soon we will not see a problem. Hope everyone is feeling ok and SEs are manageable xxx
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Re: anyone starting chemo in August?

Hello Maisies,

Back at last.  Failed miserably to change my avatar back to my Crow so stuck with avatar provided by Forum for the time being until I can sort it out.

 

A good day, no side effects apart from failing hair.  Spent a good part of the afternoon sat on a bench with friends, gazing out to sea and waiting for a WW2 Catalina flying boat to go passed.  Fabulous.

 

It is the Magnificent 7+1 up to the bar tomorrow, that is: Venice25, Lynsey44, Jules06, Nichola6, TLW, Pips64, Ivorymummy and Jacquie08 – good luck to you all.

 

Now if I could only sort out how to upload my Crow…

Best wishes,

Penn x

Re: anyone starting chemo in August?

Breezy go to my profile, then avatar and it has an option upload an avatar you can then click on that and upload from your computer. I can not work out how to write info about me. I thought I found hwere to post but then it wanted a personal  weblink and I didn't know what to do and leaving it blank wasn't an option. Sure one of the facilitators will help us.

Happy anniversary on second dunking tomorrow Jacqui. Annie that is awful not being able to contact anyone. I ahve found out my friend waited 6 weeks for onc appointment then another 10 days for chemo to start- so at this rate I will be starting mid September!!! Not happy. ALong with two holes in  wound now leaking! xx

 

Re: anyone starting chemo in August?

Hooray. In the last hour have suddenly started feeling much better, nearly human, think i might actually make it out of bed for dinner on the sofa with my heroes, OH and daughter. Hope everyone else is managing new forum format and ses without too much trouble.

Re: anyone starting chemo in August?

Annie when I phoned yesterday I had to re phone a pager. Seemed like some central line who then contacted someone but they phoned back straight away . Hope,yr ok xxx

Re: anyone starting chemo in August?

Chezza not like this.  I have no idea where the last unread is so I will have missed loads of posts.  Not a clue what my avatar will be til I post this.

Angie can see you have had your chemo so good one as you were worried about that

Good luck to the maybe magificent 7 or maybe 8 up tomorrow if they are able to find the thread

Lynsey I managed to reply to your pm but dont know if it sent or not

Re: anyone starting chemo in August?

Annie, when I phoned the helpline both times (during the day and during the night), I got straight through to someone.  Maybe it varies depending on your health authority?  If I had an urgent problem and could not get to speakto someone, I would take myself off to A&E. 

 

Anne x

Re: anyone starting chemo in August?

Well done, Angie, glad you're back!

 

Just wondering - does anyone else have problems contacting their helpline?  I've spent most of the day waiting to be called back - surely it should work better than that?

 

When my temp shot up last week I still got the recorded message and had to go through the switchboard to track someone down.....not very good!

 

Annie x

Re: anyone starting chemo in August?

hi girls is this right click reply?  Well I am day 21 #1 so I guess that means chemo 1 in complete!

2nd dunking tomorrow, had bloods done yesterday and no phone call to say they aren't ok so assume no news is good news.

My main trauma this week was having my hair fall out in clumps my lovely hairdresser came to the house yesterday tried to scissor cut it very short but it was just coming away so much she said clippers grade 1 !!   was better than I thought as my little granddaughter was here so didn't cry.  OMG the hair (stubble) that is left is so grey it looks white at the front.  It is is still hurting too hope it will settle down now.  So  think we can safely say I am not one of the 30% that cold cap works for!  At least tomorrow I will be sooo much quicker at the bar.  I have followed so many of you and had a little spending spree at annabandana what a lovely choice.  Had my first night out in wiglet which was fine if a little itchy.

 

Struggling a bit with this new format I have changed it back to oldest to newest but I do think last unread would be useful?  Changed profile pic on my tablet so shouldn't think your i pad won't do it? I chose a giraffe and then thought I would have a pic of me at my surprise birthday party with lots of hair, happier times!  Hope everyone is doing ok? We have been a bit out of sync this week but hopefully will be better now it's running again.  Good luck to all my fellow dunkers tomorrow and I hope you're se free tonight Rose?  Avonlady you sent me a message and I replied but because it was during the changeover they are now lost!  Hope you are doing ok too?

from your Baldie Buddy Jac xx 

 

Re: anyone starting chemo in August?

Hi Angie,

Great to hear all went ok, and that so far very little side effects......let's hope they stay that way.  Hopefully, you will have no further problems with your picc line.

 

Anne x

Re: anyone starting chemo in August?

Hey Angie, good to have you back again, put your feet up and relax now and I hope your SE's are minimal xxx

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Re: anyone starting chemo in August?

hi everyone had 1st lot of chemo today felt abit weird wen it first went in and not hot and clammy. hope others find us here, very tired im afraid, seem to have lost friends and messages??

just had anti sickness tabs been told to take them for three days, picc line had to be redresed as was bit of a mess, and were i had blood tests yesterday has gone all red, they didnt seem to know why.

hope everyone else is ok

 

thanks for all the encouragement 

 

angie xx

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Re: anyone starting chemo in August?

Ah yes, sorted oldest to newest, better but still doesn't take you to unread posts? Also there's no information on anyone's about me page now so we can't see each others DX info, and I can't add my avatar but maybe this is because I'm on an iPad? Xx

Re: anyone starting chemo in August?

Well I managed to get the pic rotated lol

Re: anyone starting chemo in August?

How do we add info to pic about us on profile?

Re: anyone starting chemo in August?

Anyone know how I rotate my avatar pic?  Cannot seem to change it Man Sad

Re: anyone starting chemo in August?

Well I've found my way here.  Guess it will take a bit of getting used to Smiley Frustrated