Post Xmas chemo starters thread

[Katherine62]

Yes. I've worked out the best way is if you PM here or Brewster or Maggie or Sammy with your email address we will send you an email invitation to join.

Come! Please! You can swear on FB if you want to and it is completely utterly secret and private. No-one will see it, or know you're in the secret group, no notifications on your  page that friends see, no notice that you've joined.

janexx

[Brewster]

Hi Girls

Just for clarity.... jane has set this up and I think that she (or i) have to add you as a friend request first and then we can add you.. But Jane has gone off line so it may have to be tomorrow , I'm not very techy. 😄😄😄

[Balli-Boo]

Hi Jane.

I sent it.

excited. 🙂

[Salsaroja]

I have sent you an inbox re Facebook Brewster - thank you 🙂

[Brewster]

Maggie, PM me your name on facebook and photo description so I know it's you and I will add you xx

[maggie59]

Me too..

[sammyj]

Worked it ot, have messaged you xx

[sammyj]

How do i private message you? would love to join the FB group, starting chemo 13th Jan xx

[Katherine62]

send me or Sam your FB profile name and description of your FB profile pic in a private nessage here and we'll join you in

Jane. x

HURRY UP!

[Brewster]

Jane and I are lonely on the FB page 😄😄😄 starting chemo Jan? Come and join us

[Katherine62]

Okay..... I've set up a secret facebook page, called The January Crew. If you privately message me with your facebook name I will join you......... i may have to send you a friend request first, I dunno, i've never set up a private group before.

Everyone very VERY welcome.

Jane xx

[Brewster]

Yes happy for t threads to be merged

FB would be good too

S xx

[Balli-Boo]

Hiya. FB page would be good.

Thanks.

[Katherine62]

Do we want the moderators to merge this with the other thread the 'anyone starting in January?' one?

say what you think. this IS a democracy!

jane

[Katherine62]

porrrige with semi skimmed milk or rice or almond milk if you're off dairy?  Very tummy protecting.

j

[maggie59]

Haaa yes, had thought the same re the thrush, just what I need on top of the acid reflux etc.

I have put a call in to the doc so that she can supply me with everything I need to cope with the side effects of 288 antibiotics

Ah yes, forgot your diagnosis changed too - so ours is really similar. Wonder why the treatments are different? The 12 weekly are kinder on your body I think but just takes longer to finish.

Good idea re the facebook group - these forums are open for the world to read and sometimes a bit of privacy might be better. As you say, we can still join in these boards.

How can I put on weight in hospital?? 5 lbs on in two days ??? Might have been the cooked breakfast, lunch, dinner and biscuits I guess..plus two days of doing nothing and jugs of lemon barley.

Now need to make sure that I eat before all these tablets too - oh no!! Need to find something low cal that still takes the edge off them. Bananas?

Hey ho ladies...

M x

[Katherine62]

Just a thought.....

what do we all think about starting a private Facebook page for us all. Obviously we'll still rely heavily on this forum, but i noticed a lot of other 'monthly Thread' women have done this?

[Katherine62]

No they thought mine was lobular but then the Onc said final reports showed it ductal. I dunno, everything changes all the time during the dignosis bit.

Hope you're taking probiotics and things Maggie..... I should think a nice bit of thrush would really put the cherry on the cake for Christmas.

xx

[maggie59]

Yes drugs not easy to take as they affect my stomach too. I am going to be taking them though over Christmas too which isn't much fun. Might see if there are any alternatives but doubt it.

Drain is interesting. Quite unobtrusive to wear and compared with the discomfort I had under the arm it is painless. There is a bung thing in the bottom to empty it and markers up the side to measure the contents.
Only downsides are that if anyone hugs me the bag crackles and I can't have a shower as mustn't get moisture into it. Back to shallow baths and flannels! Not for long though..

Think the only difference is that you are lobular? They thought that mine was but it's not.

Maggie x i

[Brewster]

Morning all xx

Maggie, you will be rattling 😄😄 keep taking the drugs !!

Funny isn't it how everyone gets something slightly varied with the chemo. I'm having 6 x EC followed. U taxol I think.
Have been reading about the F in FEC. And there is different opinion about whether it adds anything or not and some think it does and others think it doesn't? So I guess it depends on individual practice at a particular hospital.

At this moment in time I will be glad to have anything that can help 😄😄

[Katherine62]

Wow that's a lot of drugs Maggie. You must have felt proper poorly. How's that bagpipe drain working out? 

You're an EC too. I wonder you are EC and I am FEC, when we both had similar path reports.

[maggie59]

Interesting isn't it what different paths we are taking in terms of treatment?

Some ports some piccs and a real mix of drugs. For me 4 x 3 weekly EC then 12 x weekly taxol.

Having said that I have come back from the hospital with 24 yes 24 (6 tabs 4 times a day) of antibiotics to be taken for 12 days! This is on top of the 2 days IV. Do you think they know something I don't? No minor infection by the sound of it.

Maggie x

[Balli-Boo]

Hello.

definitely together Jane.

Will be thinking of all of us.

Have my pre chemo meeting Monday.

I dont understand why I am having the docetexel before the FEC.

Everyone on here and on other sites where I have looked for info - they seem to give FEC first.

Love

Bel

x

[Salsaroja]

Hi Balli-Boo - I am a couple of days ahead of you on 30th Decmber - I am starting with EC for 4 cycles and then Docetaxel for 4 ycles with 18 cycles Herceptin. Will be thinking of you 🙂

Stepping into the unknown!

PS Glad you are feeling better Maggie 🙂

[Katherine62]

Hi Balli

I think lots of us are starting within a few days of you so we'll all be on first go together.

Together is the key word here.

love jane x

[Balli-Boo]

Anyone having their first chemo FEC T on 2.1.2014 ?

[Brewster]

Thanks Jane!!! Yes feeling tons better, can't believe it.... Thought I would never turn that corner 😄😄😄

[Katherine62]

Hi Sam...

I see from another thread that you're feeling better after your problems post-op as well..... so you and Maggie both deserve an extra good night tonight.

so pleased for you.

jx

[Brewster]

Great news Maggie that you are on the mend !!!

I am right behind you all. I see the oncologist on 8th Jan and start EC chemo on Jan 9th.

Waiting for portacath date . But looks like we will all be starting together YAY !!!!
Not sure why I'm not getting the F and just getting the EC, But will ask when I see the oncologist

Hope you continue to get better Maggie !!

Sam xx

[Katherine62]

Maggie i am SO PLEASED for you. well done!

Same days too, who'd have thought it...

jx

[Katherine62]

I will! I'm not squeamish but I don't like the thought of that tube in me for all those months. Still, they reckon easier and fewer problems than intavenous catheter... although of course not nearly as smart as MAGGIE'S PORT.

Have just ordered a waterproof sleeve for it from ebay. I shall have to test it out beforehand and see if it really is waterproof.

Bath time will never be the same again.....
jx

[sammyj]

Hi Jane
I'm having a picc line fitted on Jan 12th to start chemo on 13th, was a bit worried about it (I'm a bit of a baby!) but was told yesterday it shouldn't be painful and I shouldn't be able to feel it once is in. You can tell me how you get on as you're a week ahead of me!
Sam xx

[maggie59]

Maggie might well be on the port tonight! More likely the Sauvignon those because I am free to go home,,,,yay. Husband on his way to get me.

Never would I have believed that 2days of IV drugs would have made such a difference. I have transformed from a miserable, worried, poorly wreck with a scarlet boob and a tennis ball under her arm into..well...into ME.!

Jane listen to you, ports and piccs...all this terminology we are getting familiar with!

It stuck me today as I packing my stuff to come home that I am becoming an expert in hospital packing. Chargers, laptop, ipad, notebook, kindle, squash, sherbet lemons (yes I had some left) oh and pjs and clean knickers to come home in.

Well your timing is exactly the same. Wed 5th port fitted and Thursday 6th first chemo!

At least we can enjoy Christmas and new year then have a few days to get back into routine.

Maggie x

[Katherine62]

I've just got a letter with my start dates which made me a bit quakey.

3rd for chemo talk

5th bloods and picc line

6th the first poisoning .

ARGHHH!!

Anyone else having a picc line?... I know Maggie's on the port, so to speak, but my hospital don't do them, but they do like their piccs from the off.

janex

[Salsaroja]

Heal well Maggie - laughter is the best medicine but mind those drains 😉
karen x

[Katherine62]

Hurrah!

You make your new drain sound like a set of bagpipes!

Love Jane x

[maggie59]

Hi All

Back on track now to join you in January!

To cut a long story short. Managed to end up in hospital yesterday with infected boob which was not responding to oral antibiotics. Bright bright red, swollen and oh so sore.

IV antibiotics yesterday and incision and drain under node scar today with further IV drugs through until tomorrow then more to take home. Have fancy bit of kit called a corrugated drain fitted which consists of a bag fitted over a pipe that keeps the wound open. I think that he bag sort of sticks on but need to be shown how! That should be fun.

Home tomorrow, drain out after a week, Portocath fitted between Christmas and New Year and Chemo hopefully first week in Jan!

Ladies I am feeling much brighter, my arm actually hangs by my side instead of bouncing off my boob and I am UP FOR IT!

Amongst the serious stuff we are going to have such a hoot.

Maggie x

[Brewster]

Hi Jane

I have Ben out today for lunch, first proper outing since bilateral mx two weeks ago. I have a house full at Xmas which I'm really looking forward to. They can all muck in and do the work and cooking !! I haven't got a date yet for chemo but will DEFINITLEY start in January

Sam x

[Katherine62]

Hi all

Starting chemo first week in January FEC-T for six goes. I've had a LOT of wobbles about chemo, but am now resolved it's the way forward.

How's everyone coping with Christmas run-up? We (husband and daughter and me) keeping it low key but just thankful that I won't be having to cope with chemo over that time, both practically and emotionally.

Jane

[Salsaroja]

Hi Brewster - sounds like we have similar diagnosis... cant wait to start either yet very glad that I will have a 'normal' xmas with my children before the challenging times ahead. Karen x

[Murphy69]

Hi all was told about this thread by Brewster .hope over to it though my date for chemo is the 23 rd dec though i still having some drninage off my back where they took some muscle to support my reconstruction . At least its diwn to 260 ml over four days . I hoping to be less by end of week . If not I could well be starting in jan with you all. I have had a mastectomy , on right side , lymph node clearance 20 nodes out of 24 tested positive for cancer and reconstruction done on the same day l do far healing well . Four weeks since op . Been told it was a grade three tumour thats owned three other tumours in the breast as well so mastectomy as the best choice of treatment . I am having FEC-T fir four and half months with herceptin , radiotherapy after chemo finishes , herceptin for the remainder of 8 months , then tamoxefin for five years . The thought of not having a nipple till this time next year is very upsetting for me and I just hope this time in 2015 I will be in a much better place and have a less stressful Xmas than I have had to face this year. I think I will have to stop myself bring so excited that I have a new nipple for xmas if it is . I hope mt ct scan wed is clear results on the 22 nd so hoping for good news before Xmas that the bloody thing has not spread else where . Helen xxx

[Brewster]

Hi Karen and all the other lovely ladies joining together ready for January chemo.

I haven't got a start date yet but DEFINITLEY chemo as triple negative, close margins, grade 3

Can't wait to start in a weird way so i feel,I am doing something to knock this on the head !!

[sammyj]

Hey Ladies

Can I join you? starting chemo on 13th January, I have had a WLE and SNB and that showed 2 of the 3 nodes damaged so had a clearance on 5th December. I'm booked to have the "picc line" fitted on the 12th then have 6 lots, 3 weeks apart. Not bothering with the cold cap, although the hair loss scares me more than anything I don't think I can cope with more discomfort than I need! Feeling positive, this time next year it will all be a thing of the past. Together we'll beat it

Sam xxx

[womblemum]

Hi all,

 I am new to these forums, but believe I may be joining you ladies in the New Year.

I was diagnosed on 27th November and had WLE and SNB on the 5th December.  Saw consultant last Friday for results and tumour was 21mm but thankfully clear margins and SN was clear... good so far!  It has been graded as a grade 3 so they are now talking of chemo then radiotherapy and it is hormone responsive so tamoxifen for 5 years after that.

Got a meeting with the oncologist later today so feeling a bit nervous and unsure what to expect.

Have been reading the forums for a couple of weeks now, and I must say it really does help to know you are not on your own.  I am so lucky that hubby, friends and family are so supportive but I guess sometimes it just helps to read about others going on a similar journey.

Take care lovely ladies xx

[Balli-Boo]

Hello Brewster an January Chemo starters.

I saw onc last Fri for first meeting. 

Hospital just phoned. Pre chemo meeting Monday.

2NDJan.

Having 6 sessions FEC T starting with the T first.

Thinking of trying out the cold cap.

If I can stand cold/pain and it works then great. If not then... great too as life/ death sitution.

I knew on 28/11/2014 I would be having chemo.Now I have date.

All getting closer.

I am petrified of course. Ladies on this blog have helped keep me going.

I am quite a positive person so hopefully I have helped others also.

Planning to have a nice family Christmas.

Trying not to think about chemo too much but.....

So glad that I went for that mammagram and it was picked up.

Roll on. The quicker get started the quicker next stage!!!

Cant wait to get to other side. After chemo I have to have axillary clearance then radio. So...

looking at fair few months yet.

All the best everyone on here.

Lets help each other get through.

x

[Salsaroja]

Yayy I found you all - I am Karen, just turned 46, single mum of 3 sons, dance/fitness instructor - I have been posting on the forum since my diagnosis on 20th november! I have been using this resource as find it helps me to talk to women who understand where I 'am at' rather than friends who love me... ❤️

I start my chemo on 30th December so thought I would join this thread as well as the post xmas one. I am stage 3, grade 3 fast growing, 2 enlargements in lymph ndes but CT scan show rest of my body is clear 🙂 I am borderline triple neg...

Doc's have now moved my surgey back and need to start the chemo first as tumour has gone from 25mm to 45mm in 2 weeks 😕 Scary times, emotions everywhere, exhausted and trying to fit in what I can when I can to prepare. Just wanted to say hello and will be joining in as and when... Best wishes to everyone
Karen x

[Katherine62]

Scans clear! Deep DEEP relief. Husband said it was the best news he'd ever had and we were both silly with relief. Chemo booked to start Jan 5th... I said i wanted a breathing space. XXX

[Brewster]

Ahh Maggie , you will be a member of our elite post Xmas club xxx

So sorry your chemo is delayed but good to have Xmas chemo free

Hope the antibiotics have kicked in now ?

Will pm you xx

[maggie59]

Looking more and more likely to be starting with you ladies in the new year!

Port thingy and chemo cancelled because of infection in breast.

Seen surgeon today and had over 50ml fluid aspirated from under node scar - the fluid had become infected.

On antibiotics and review again Monday but unless clear nothing will happen until the new year which mentally is a bummer.

Suspect it might need to be aspirated again.

Getting very frustrated

Maggie x

[Mariena12]

I am going wig shopping today with my friend, well just for a look anyway, I wasn't too sure how far in advance you have to order a wig, but I think it's not long. How soon does your hair fall out? I have no start date yet for my chemo but I think it will be either the 5 or 12 January, I will be armed for this 🙂 I'm going to try to relax at Christmas and live it up a bit. Under arm has a burning sensation after the lymph nodes got removed and it is really annoying, it has taken me a lot longer than I thought to recover physically from this, I won't go there about my mental recovery that is a different story. I had a mx and reconst on my left side, implant first, then I had the temperature etc and implant failed so had to go back in and get the balloon thing. So my chemo should have been earlier but got pushed to January. At least we can get through Christmas