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Starting chemo in September???

elma55
Member

Re: Starting chemo in September???

Just had a phone call from the hospital's wig fitters to arrange my appointment, just in case I lose my hair – had my 8-weekly trim on Saturday (sadly haven’t got the courage of Batman just yet) and made another appointment for 8 weeks hence, just in case …

 

Flu Jab – Although it’s a good idea to have one providing the timing is right, my GP told me to check with my onc or BCN first, especially if chemo is close to starting or has already started.

 

Lulu - swamp juice actually makes it sound palatable, think I can do that 🙂  It’s good that your onc is keeping you in the loop.  Wonder if you can choose which bone marrow booster to have as neulasta (probably the most expensive) would suit me fine (not good with needles, go horizontal thinking about it) – chilled drinks can for numbing the local area is a great idea  xx

 

Hazey - good luck with your scan results today  xx

 

PTB, Tracey and Ally will be thinking of you tomorrow, let us know how you get on if you can xx


Hi Maseo, there are plenty of wobbles here too but we’re all here for you xx

 

Sam – Burgundy Book rules suck!  Like Nikki suggests, maybe you can meet up with them out of hours xx

 

Hi Kate - you’re absolutely right, keeping busy is the best thing xx

 

Hi DTebbs, welcome aboard!  As you’ll see from earlier posts some of us have already started treatment, and are doing really well.  We’re all here to share and support as and when … xx

 

Pips, you’ve just made me laugh out loud - go ahead and kick him! xx

 

 

pips64
Member

Re: Starting chemo in September???

Morning Stars

 

Good luck today for all those of you with ONC appointments today 🙂  Day 3 of SE's all i can say is someone hit me with an acme mallet. Im alright just got a headache which I can't seem to shift. Sure I'll be ok.  Off to rheumatolgists laterr, bring on the pain , he justs love to manipulate joints 😞  . I'll kick him today

Blue_topaz
Member

Re: Starting chemo in September???

Hi Everyone

 

Hope you don't mind me joining in.  I am due  to start chemo next week.  Dreading it too.  I was dx with invasive lobular .  cancer - left breast, had mastectomy, then full axcillary clearance after SN showed cancer cells in two nodes. MRI showed the other breast is clear  - although I am still considering having this removed after treatment. 

 

I am having FEC-T , going to try the cold cap, although I know it may be uncomfortable, suffer with headaches, so not sure if this is a good idea, but I will try anyway.  I was told told the first session is the worst, as you don't know what to expect or what side effects you would expect to happen. So I am sure I will be wanting loads of advice and support.

 

xxD

KatePB
Member

Re: Starting chemo in September???

Hi all

Good to read all comments and know others are going over similar emotions, etc.  Thankfully I'm feeling much better today - no tears so far!!  Busy today with lots of chores to complete.

KatePB
Member

Re: Starting chemo in September???

Nikki
Had my seroma drained four times. It's seven weeks today since I had my mastectomy. My surgeon prefers to use glue so I did not have a drain this time. 11 years ago when I had a partial mastectomy and then lymph nodes removed in two separate ops I had drains both times and did not need to go back to hospital as district nurse visited me at home daily both times to look at drain and eventually take it out. Hope that helps. Take care. K. xx
Nikki49
Member

Re: Starting chemo in September???

Samjs, I asked my cs he said good question make sure you ask the onc!!
I think this Burgandy Book u mention is a load of bull***t how ridiculous bloomin bureaucracy gone mad in my opinion. Can u not meet up after work for a quick drink with your colleagues instead?
It is strange how the littlest of things can turn your day upside down at moment. I burst into tears this morning cause I couldn't get an over the head top on.

Will be interesting to see when the 4 of us with onc appointments today actually start.
Take care xx
samjs
Member

Re: Starting chemo in September???

Hi stars,

Nikki I think it's cos you are triple negative the coil wasn't meantione dbefore. Mine was 8/8 on both hormones and I had that results just from teh biopsy. BC consultant  told me to get it  removed immediately!! Luckily I had an appointment  to have it changed for a few days later.

Feeling a bit sad after reading an email. I intended popping into school to see my colleagues (if I don't get to Greece) and the head teacher has asked that I don't as he doesn't want to compromise me, the school as my employers and HR maybe on his back as they have to abide by the Burgandy Book rules . (This is a school thing). This has knocked me for 6! I do feel rather fragile  today due to onc appoint this afternoon.  I  wante dto see them before I lose all my hair!!Sorry to those of you who have read this on FB.

 

4 of us with onc appointments today then. Anyone up at the bar today? xx

 

frenchfancy
Member

Re: Starting chemo in September???

OMG! Barbs. Been busy with bits so far this morning and completely forgot about this time next week. How did that happen? Have PM'd you re-FB so just let me know how you want to do this. Good luck at opticians today. I have an appt with nurses to check wound again. They'd better see an improvement, do not want any delays getting started. Grrr!

Hazey_85, they might call you to give you all clear as well so don't think the worst if the phone rings. They called me with bone & CT results. Hopefully good news for you too.
Lulu, thanks so much for the info on the jabs. I'm sure they told us all that at our Onc appt but as with a lot of the details, it needs to go into my head a few times before it stays there. Think this will become known as 'chemo brain' haha!
SpikeyRed, thanks for looking in on us. Hope you & all the other Maisie's are doing ok. If I get a chance will pop over to see how you've all been coping x

In case I haven't said yet, best of luck to all you lovelies with visits of one sort or another.
Will see you all later. Xx
frenchfancy
Member

Re: Starting chemo in September???

Yeah, Maseo, Pm is great and she'll add all your details. Will also let us all know when she posts updated info. Any probs let us know x
Maseo
Member

Re: Starting chemo in September???

Hi

Thanks for replying how do I let Barbs know?  Is this by pm - have a few probs negotiating around the new site?

George

frenchfancy
Member

Re: Starting chemo in September???

Morning Maseo, and welcome to the Stars 😃lovely to have you on board. I think everyone of us is still a little overwhelmed by where we find ourselves but its absolutely fine to be teary & a bit scared about it all. We have no problem being a listening ear if you need a moan, rant, or to tell us how you're feeling. We're all here for you. Big hugs (((x)))
Barbs (Barbarella63) has a list with everyone's details/dx/treatment dates etc so if you want to let her know where you're up to we can all keep a look out for you.

Keep letting us know how you're getting on xx
Maseo
Member

Re: Starting chemo in September???

Hi Superstars

 

Any extra questions I should be asking the chemo nurse tomorrow?   All suggestions gratefully received.

 

Georgina.

Cinderssarah
Member

Re: Starting chemo in September???

Nikki49 - my thoughts exactly. Mine was put in to control my fibroids and is overdue for change anyway and no one would answer the question of what to do about it  til last Friday - lol fibroids are the least of my problems now!

Sarah x

Barbarella63
Member

Re: Starting chemo in September???

Just realised I got away with the word fart not being bleeped!!!!!!
Barbarella63
Member

Re: Starting chemo in September???

Morning laydees😃 good luck girls with the Onc apps today may all your news be positive, ill be thinking of you all and waiting to update the list with your cocktail start date. Woke up this morning and thought EEK I start the chemo A WEEK TODAY ARGH feeling a tad nervous.....only option is to take my mind off it and that could involve spending more dosh oops think OH will be relieved when I am no longer feeling up to going out on spending sprees, but then I reminded him about Internet shopping and he visably paled haha I'm still farting around with the blooming Facebook group LULU,did you get my invite? Have now sent friend things to SAM Sarah Hazey and Bonnie you'll have to accept before I can add you! Anyone else that want in let me know! Also if you don't have Facebook you could sign up and just not add any friends but me and you will get access to the group without anyone knowing you are on, all posts and pictures to the superstars group are SECRET and can only be seen by other members so don't worry no one will know about it if you don't want them to!!
I've got an eye test today so I shall be off to town for that hope all of you manage to have a good day and Onc girls check back with us so we know you guys are ok Barbs xxxxxx
Maseo
Member

Re: Starting chemo in September???

Hi all

 

I think I have just posted to the August thread, and as I start my first cycle on Wednesday - perhaps I should be here with you guys.    I still not very strong, tears and fears.............. but I am trying.

 

They really have changed the web site haven't they - still have a few problems on finding where everyone went!

 

Georgina.

Nikki49
Member

Re: Starting chemo in September???

Cinders - yes of course, I'll put up the answers here. I'm triple negative so maybe I won't have to have it taken out, although I am wondering whether I should get it taken out anyway. Since dx I'm suspicious of everything that I put in my body.
Nikki x
Cinderssarah
Member

Re: Starting chemo in September???

Nikki49 Will you let us know aout the flu jab I forgot to ask??? My onc said the mirena coil had to come out (i'm ER+), just have to find someone to do it (doctor surgery don't run the service so have to try the family planning clinic and if that fails then they'll get the gynae dept to do it-large sigh)

Sarah x

Nikki49
Member

Re: Starting chemo in September???

Good morning Stars,
Well haven't you all been busy, I had a whole page to read 🙂

Frenchfancy - sorry to learn your mx wound isn't healing too well, I feel a bit of a wimp now moaning about my seroma.
Chezzap - thanks for the encouragement, hugs right back at you xx
Rachelr - poor you 5 weeks, I'm out of surgery 4 wks for mx & 3 wks for ANC, I've had it aspirated twice but I'm definately gonna have to have it done a third time, fingers crossed that'll be it.
Katepb - how many times did you have your seroma drained & how long after surgery did it eventually stop filling up?
Thebatman - how brave are you shaving your hair already, I don't know whether its a case of head in the sand but until my hair starts to fall out I don't think I could do that. I love my hair it's the most I can do to look at pixie hairstyles at the moment, I'm seeing onc today if he says yep you're deffo gonna lose your hair then I'll go get a pixie cut.
Spikeyred - thanks for the good wishes, I'm actually going to print out a treatment calendar to put on my fridge so that I can tick of the days, I guess it'll be a bit like an advent calendar leading up to the big day when treatment is finished 🙂
Samjs - I'm at onc too today, so I'm currently sitting here writing up a list of questions, so far I have :- flu jab? Marina coil should it be removed? Will my hair deffo fall out? Not so sure about the cold cap? Cannula v picc. What are you gonna ask?

As well as an onc appointment I also have the hygienist today I think I hate her more than the dentist 😞 but in the great scheme of things guess she isn't that bad now.

Have a nice day stars, take care xx




Bonnie8862
Member

Re: Starting chemo in September???

Thank you lulu for all the great hints these things really help when shared .. Understand it much more now
Cinderssarah
Member

Re: Starting chemo in September???

Morning Sam good luck today - onc told me on friday it would be about two weeks to dunk day and there was some flexibilty in that so fingers crossed you'll get your Greek getaway 

Sarah x

 

 

samjs
Member

Re: Starting chemo in September???

Looks like it's me, lulu and Bonnie seeing onc today.  Harry hope your results are good, they rang me to tell me I didn't have bone Mets. Agree with lulu that getting bad news is almost better than the waiting. Each time I had a appointments I would be so worked up, then when given bad news it's was almost a relief because I knew what I had to deal with.

I am not up until 4-15 and am praying we can nip off to Greece for a week,already found flights for tomorrow afternoon. Will check back in later, hopefully with news I can go. 

Not sure if anyone is  at the bar today, if so good luck.

Sam

 

Ps French fancy think I may have accidentally declined friend request on Facebook can you send again please.

spikeyred
Member

Re: Starting chemo in September???

Good morning stars, just popping in from August to wish all those starting this week the best of luck. Hope it all goes smoothly and the se are ok. It is good to get things started and then you can start crossing each off off and another step of the journey completed. I had my hair all shaved this weekend so that was another milestone and boy it feels much better now it has gone. Thinking of you all xx
Lulu34
Member

Re: Starting chemo in September???

Ptb red pandas are my fave... They are super cute.

I have an appt with my onc tomorrow..... Not for results.... I just think hes wanting to keep me in the loop so to speak..... Would rather be getting on with treatment as will be xmas at this rate. Hazey good luck with your bone scan results.... Waiting for results is the pits... Its weird how sh1tty news is somehow easier to deal with than not knowing its good news.... Brains are strange things! But hoping they phone and out you out your misery either way and dont just leave you to guess.

Good luck to you ladies with appointments or getting their swamp juice this week.

With the steriods if you try to take them first thing in the morning and the second lot about lunch time you might find you dont get the sleep disturbance.... Would definitely recommend taking them before 4pm or you'll be up all night.


The neulasta is a one off injection given into the tummy area about 24 hours after your chemo..... Its a type of medication called GCSF (granulocyte colony stimulating factor) which encourages the marrow in the long bones especially the femur (thigh bone) to create new blood cells.... Thats why you can get achy legs but it doesnt get injected into the bones and the needle is very fine and small similar to an insulin needle.... Other names are filgrastim, pegilated filgrastim, leograstim.... Some are given as a one of dose like neulasta, but others are given, 5,7,10 or even 14 days. You can do them yourself or get a family member to administer it or a nurse can do it for you at home or at your gp.

I did mine myself when I had chemo last time as i was having taxotere and carboplatin which are hard going on the white cells.... And it did the trick.... It was just given as standard.... First chemo i had was Epi-CMF and my bloods dropped each cycle but never low enough to delay treatment or need GCSF.

When i did my jags after Tax&carbo I had to keep it in the fridge and remove to leave it at room temperature for 30 mins before injecting it.... and during that 30 mins i stuck a cold can of juice down my leggings so my tummy would be a wee bit numb where the injection went in.... although im a nurse id never given a jag to myself so was really anxious but after the first one it did get a bit easier for the next 5 cycles.... the instructions are on the pack and pretty self explanatory. So fingers crossed for you guys.

Love and hugs
frenchfancy
Member

Re: Starting chemo in September???

Why is we've all decide to write novels today? Answered on a postcard please!

-Chezzap, nice to know we've got someone with previous experience looking out for us as well as each other doing the same, thank you. Have been too scared to check out the Maisie's but have said here that's probably due to a 'mini-denial' phase I've been having!! Terrified what it could do to us. I hate this being poorly lark. Not fun!! If I'm feeling brave some time this week, might take a peek.
-thebatman, I haven't got the bottle to do the shave just yet. Not only that, I still don't have a stitch to wear!! Will start my search in earnest this week.
-Barbs, we always used to holiday somewhere in the UK, until we discovered a lovely area in France. Everything else feels like second best now. Next year again maybe?!? Btw, didn't realise you were trying to sort out Sam &Bonnie for FB. Never mind, they'll get 2 new friends for the price of 1, haha
-Rachel, does injection have to go into the bone? Or am I just thinking the worst? How big is the needle? They asked us if my OH was going to give me the jab & really not convinced if it has to go in too far. Hate needles & they hate me!!
-PTB, lost count of how many yrs we've said will go to Chester Zoo...and we only live 20mins away! Glad you had a lovely day out. Have seen a pic of the new panda cub, sooo cute. Not surprised you wanted to take him home! Have really tried to stop the 'what if' way of thinking. Have found it not productive & no point wasting time worrying about things we can probably do nothing about. Much more serious things to worry about, like what the heck (*watered down!! Ha) am I gonna wear on my little baldie head when the time comes?seriously!! Am I the only one here that's not got it sorted?
-Kate, that's good advice from PTB re keeping busy..will be finding as much as possible to keep me occupied this week. It's going to be a long week as I've a never-ending ToDo list

Just another shout-out to anyone with any appts/scans/ results tomorrow(today) the very best of wishes, and for anyone due to have your first trip to the bar this week, try not to stress too much. We all know this is the only way we can help to beat this sucker!

Keep well, stay strong and keep shining xx
Bonne nuit 😴

pps- for all those we might not have heard from recently, hope thats a sign you're all doing ok!

pps- will update tomorrow where the 'french fancy' comes from. Not a very interesting tale though, so you've been warned 🙂
Hazey_85
Member

Re: Starting chemo in September???

Hi stars

Good luck to all those getting results or having onc appointments tomorrow (Monday) let us know how you get on.

I should be getting my bone scan results tomorrow sooooo nervous!!! They said they'll call me if its shown up in my bones... going to be on edge now every time my phone rings 😕 already think every little twinge is bone mets!

Rachelr- glad them after injections aren't too bad, like you my hubby had been volunteered to do mine. Hope you manage to get more sleep tonight and nausea has passed. Keep us posted.

Nikki- sorry to hear seroma has made an uninvited appearance blooming nuisance, have they said they'll drain it again??

Chezzap- thanks for your words of encouragement, suddenly all feels very real so once we've all got one underway lets hope we know what se's we're dealing with and get on top of this!

Thebatman- well done on being brave and shaving your head, thats one less thing to sort out. my wig is on order so won't be long before I'm doing the same think I'll feel much more in control than waiting for it to fall out.

Frenchfancy- so glad you had a nice break! Apart from being shattered I hope it took your mind off things and you've got some good memories from it.

PTB- glad you enjoyed the zoo shame about them unicorns but I would've been right behind you in smuggling them red pandas. Hope you've managed to have a nice chill this evening.

Hoping all other stars are doing ok. Big hugs to all!
Sleep tight
Xxxxxx
Cinderssarah
Member

Re: Starting chemo in September???

Sending good wishes to everyone who have hospital visits of one sort or another tomorrow Woman Happy xx

Guest user
Not applicable

Re: Starting chemo in September???

Good evening Stars,
Gosh you go out for the day and then there you all are posting away and I have a lot of catching up to do. Spent a wonderful day at the zoo even though it was a tad chilly. Sadly no unicorns but I did nearly come home with a red panda stuffed in my handbag! What a gorgeous little creature. Absolutely shattered now so it's a definite total collapse on the sofa this evening and a " chat" with the Stars.
Bonnie I think my sleep problems are purely anxiety, apprehension and fear of the unknown. Unlike all you other Stars chemo is my fist challenge. The waiting around from dx to now has been awful as I'm sure everyone will agree. There has always been something to worry about. And once I wake up my brain goes into overdrive pondering over "what if this" and "what if that" . I'm sure you know what I mean.
So sorry Nikki that your day has been so rotten. Hope by now it has improved and that you manage a good nights sleep.
Bonsoir Frenchfancy. Wondering about the "A bientôt". Is there a French connection? Originally thought your ID might refer to those delicious little cakes but now I am doubtful, especially knowing you have cancelled a holiday in France. Hope you have enjoyed your mini break. We all need lots of treats at this time. I'm with you on the fighting our way through this. I know how hard it's been for me so far and I've got a hell of a way to go yet. Despite all my anxiety and fears I am determined to get through all of this. My family and friends tell me I'm a strong women and I have to keep that in mind to achieve my goal.
Thanks Chezzap for your good wishes today. I often take a peek at what you Maisie's have been upto. Gives me a bit of an insight into what lies ahead and quite a few chuckles as well.
Kate as you can tell from the above I'm right there with you. Just try to keep busy for the next couple of days and most of all stay positive.
Everything you have said thebatman is absolutely right. Terrified we may all be but deep down we know what we have to do. Haven't had the courage to shave my head yet though!! More like cowardly lion rather than a tiger!
Well Barbs sounds like you've had a great Sunday. It's great when someone else is paying isn't it. Know what you mean about the cancer card too. Hope the eyebrows settle down and you don't frighten too many people while you are out and about enjoying yourself.
Well it would seem that my posting is rapidly becoming a novel just like Barbs so I am going to sign off with big hugs and love to all you wonderful Stars. Good luck to everyone who has something to get through tomorrow xxxx

Guest user
Not applicable

Re: Starting chemo in September???

Barbs: Its a zero (no attachment). Nothing like a shaved head to bring out the cage fighter in you!

Barbarella63
Member

Re: Starting chemo in September???

Helllloooopo girlies been out to the pub for lunch which was fabbbbb! Gotta be some bonus to having the cancer card had LOTS of treats lately and positively no moaning despite the vast amounts of money I've been spending on potions and hats and god knows what else!! Had the eyebrows finished off yesterday OMG they look scary...they go very dark when you have them done (they fade by 30%) and I have to put this stuff on them to keep them moist, so they look a bit gooey lol and the hair has to be pinned off the face so it doesn't infect the brows so all in all I looked most attractive at the pub hehe wasn't going to stop me going tho!!

So as you can tell I'm not as clever as I thought I was and am having probs with the bleeding Facebook group, however it will be sorted and I think it will be great to see each other as real people and not just on a cancer forum, we can put our photos on, I think (I will put my baldy head on when the time comes) and loads of other stuff! And we can say what we like without being bleeped lol. I know it won't be for everyone and we will still be here on the forum but its just a more personal outlet for those that want to really get to know each other! So bear with me! I've found frenchfancy and made her an adminer Ashe seems to know what she's talking about, and when lulu replies to the invite ill make her one too then hopefully between us it will be done!!!!!

Anyway I've been catching up on your posts
Rach glad you're not feeling too bad, and the injection was doable, shame about the lack of sleep and the dodgy taste buds but I guess things could be worse!! How's the joints after the jab? I've heard they can ache!! Anyway keep drinking the fluids and hopefully you will continue to do well, lots of love to you xxx

Bonnie going to be thinking of you tomorrow girl, sending loads of positive vibes to you and really hoping your results are good. When you've got your date to start let me know and ill update the list!!

Nikki can't believe your blooming seroma is back, how rude!!! It's like the guest that won't leave the party!!! I do feel for you, the short time I had mine was hell. Really hope it settles and you can start to move on from it. Sending you a mahoosive virtual hug!

Kim/frenchfancy sorry to hear you have healing issues, what a drag!! Still I've made you an adminer on the Facebook group so sorting that out will take your mind off things hehe Cardiff is a nice city, perfect for a mini break!! I'm all over the mini breaks at the moment lol if I can't have a full blown holiday I'm having some mini breaks - been to Norfolk, London and the Lake District ...lovely sometimes I think we forget how lovely the UK is!!

Chezza nice to see you spying on us for a change...makes me feel better hehe hope things are ok with your dad and poor Sergio, stay positive and don't lose that wicked sense of humour!!! As you can tell the copying continues lol a Facebook group is coming (hopefully before we have all finished chemo haha)

Kate keep your chin up, everyone has a wobble now and again but we need to remember that thousands of poor sods have done this before us and got through it and we will too!! We are all here for when you feel upset and fed up, no one quite knows what you're going through like someone who's going through it too!! Get yourself on Facebook 😃
Bonnie/batman still working on adding you to the Facebook group, have sent you a msg.LOVED your fighting talk, what number have you shaved your head to? You sound well up to the challenge, I'm loving your positive thinking, we do need to get tough and DO THIS!!!

Phew that was a novel and a half, hope you haven't nodded off reading it haha Barbs xxxx









frenchfancy
Member

Re: Starting chemo in September???

Good afternoon one & all,

Hope we are all enjoying our Sunday afternoons. For those of us fit & able, what have we all been up to? And for anyone not shining quite so brightly today, your time will come soon enough!! Thinking of you all xx

Just a quick update for something Barbs had mentioned yesterday. If anyone is interested, there's now a 'secret' group on Facebook that she has sorted out for us to meet up on as well. It doesn't mean we have to choose one or the other, as I know some of us don't or won't use FB , and this wonderfully supportive forum will of course still be here for us all but it might be nice to put faces to names, etc. or get an idea what's going on in our lives besides this horrible intruder!!
Anyway, let Barbs or me know, via PM, if you'd like to be included or if you have any questions about it and we'll see if we can get this up & running. Apparently the Maisie's already have one on the go which works very nicely.

That's me done for now as I keep losing a signal. We're on the train home after our 'mini-holiday' in Cardiff. Not the most exciting choice of places I know but what a lovely time we've had 🙂 To be honest, probably done a bit too much over the last few days. I'm absolutely shattered!!

À bientôt!! (Until later!) xx
frenchfancy
Member

Re: Starting chemo in September???

Hi the batman,

Couldn't agree with you more! We all know we have to come out fighting as hard as possible and do whatever it takes for however long it takes to kill this thing dead. I know what I'm finding difficult is that, no matter how hard we try not to let it, we lose some control of our lives to varying degrees. And I for one am not dreading the day the chemo starts but more the fear of the unknown on a daily basis.

We are all strong, determined and, I'm absolutely certain, fully prepared to fight to the death...of this disease!!
Guest user
Not applicable

Re: Starting chemo in September???

Ive Just shaved my head ready for my 1st chemo this Friday.

 

For those of us apprehensive about starting chemo this month i want to say this:

This is a battle with cancer.

We have to fight it hard with everything weve got.

Chemotherapy, Radiotherapy & Endocrine treatment are our weapons.

We are ready for the fight ladies. Dont dread the day the chemo starts because every day until then the  **bleep** cancer can multiply away without any resistance.

 

 

KatePB
Member

Re: Starting chemo in September???

Hi all

Thanks for the good welcome.  As I wrote yesterday I start chemo on Weds 4th, with blood tests on Tues 3rd.  Not been a good couple of days for me.  But as some of  you have written sounds like par for the course.  Been very tearful which just is not me and apprehensive.  Cannot wait for Tuesday and the whole process to start.  Thankfully the seroma appears to have gone, or at least reduced and just draining naturally in my body, so no more visits to hospital to have that drained.  Best wishes to you all.

rachelr
Member

Re: Starting chemo in September???

Hi Bonnie,

It probably is the steroids keeping us awake - I am having to take Dexamethasone for 4 days  - I thinks it is to prevent sickness/nausea and then I have some back up pills called Domperidone which I can take if I feel nauseous (and these have been really good ).

 Neulasta is an injection (or a course of injections) which help you to produce more white blood cells from your bones and so reduce the risk of the dreaded neutrpenia sepsis. Some hospitals give you it automatically but others wait and see if you have a problem with your WBC  levels as I believe that it is very expensive. And of course, as with everything that is supposed to help us, there may be side effects ; I was warned about pain in my hip & leg  bones.

Hi Nikki - poor you. Seromas are such a pain (literally). I have still got mine 5 weeks after surgery altho'  it is about half its original size. It felt like it would never go  -  I had to have it aspirated twice but they were happy for me to have chemo just as long as they thought it would need no further aspirations. Mind you it seems to have got a bit bigger since my chemo which is a little worrying after it was decreasing nicely until then!?

 

xxx

chezzap
Member

Re: Starting chemo in September???

Hey girls its officially star season now!!!

 

Good luck to you all intrepid pioneers!!.  Dont be scared its DOABLE!!!!!!!!  Not pleasant by any stretch but most definitely doable.

 

It will soon be October and then you will feel like wise old sages no longer the new kid so the block so to speak!!!

 

massive hugs to you all xxxxxx

frenchfancy
Member

Re: Starting chemo in September???

-Katepb, welcome to this group of wonderful ladies. I hope you'll find it as helpful & supportive as I have found so far.
-Sam / nicky49 / bonnie8862 good luck for Onc appt tomorrow. Lets hope you don't have to wait too long to get this show on the road!
-Bonnie8862-also feared the worst when they did extra scans. They tried to reassure me it was just to find out what dealing with though and it was unlikely to change chemo plan either and luckily mine were also clear. Will keep everything crossed for good news for you. Also, easy to say I know, but try not to worry too much
-Sam, we also needed to get away for a short break, just back from Cardiff & while not the hols we had to cancel in southern France at least we've had a break b4 getting stuck in. Just be careful not to do too much! If ur flying, was told I'd need a sleeve for arm in case of lymphodeama. Not sure if this is a risk for you but worth checking maybe.
-Nicky, so sorry to hear seroma has reared its ugly head again. It does seem to take forever & am actually finding my 'ridge' (ex-seroma) seems to be spreading across chest so fluid is not being absorbed by my body as had been told. Still trying to get the mx wound to heal as well 6wks down the line - so understand your frustration.
- For everyone who was dunked this week, hopefully all your se's are easing off. I am taking notes though in preparation for next week, so any advice is invaluable.

Hope everyone is getting a bit of this lovely weekend weather and enjoying it to the fullest.

Big hugs to anyone in need if one (((x))) and lots of positive thoughts for anyone due to get started for real this week. Will catch up with you all soon 🙂
Nikki49
Member

Re: Starting chemo in September???

Good morning Stars,
Hope all of you that have been dunked so far are having no or at worst minimal se's.

My seroma saga continues 😞 it's back not quite as big as last week yet! but sore enough to put me back on regular pain killers as its pulling on my ANC wound, the stretched skin feels like sun burn 😞
It's really getting me down now - I had a good old blub about it this morning, how much longer is this going to go on for?

I'm over the blubbing now , now I'm just really pee'd off with it all.

Sorry rant over, hope your all having a better Sunday than me xxx
Bonnie8862
Member

Re: Starting chemo in September???

Elma and racheir ill try to stay positive keeping busy so that helps.
I notice a few ladies are nor sleeping and are on here in the middle of the night . What is it that keeps you awake ? I notice one post mentioned the steroids why would this be ?
Racheir what is neuulasta and what's it for ?
rachelr
Member

Re: Starting chemo in September???

FEC-T, First FEC, Day 3

Hi Stars ,

Welcome Kate , best of luck for the 4th .

Jo, like you I found that the Neulasta jab was fine - I didn't look but hubbie said it worked! I'm only having one  jab  after each chemo so that's not too bad.

Gold,  I have been drinking lots as well - my nurse said that the 24hrs after chemo were the most important - but I found it really hard as I did not like the taste of tea, coffee or tap water any more and the only things I can manage now are sparkling water and squash.

Bonnie, we will all be thinking of you on Monday - like Elma says, try not to worry too much xx

 

Pills are still keeping nausea at bay but only 3 hrs sleep last night - an improvement but I am feeling rather zombie -like.

Rachel

 

Lulu34
Member

Re: Starting chemo in September???

Barbarella iv sent you a Pm. Even if its secret there usually is still away of seeing a page and requesting to join so not quite sure whats up... But if you can add me i can try and see compared to the other groups.

Xxx
Barbarella63
Member

Re: Starting chemo in September???

List














NME/DIAG. DATE/TMNT. NUMBER. LOCATION

Avonlady/no details. 28/8. #1. No details

Rachels/WLE gde3 ER/PR/HER2- 29/8 FEC-T. #1. Reading
HEvg123/MX/ANC(3/?). 29/8 FEC-T. #1. Kent coast


Jo43/WLE/ANC(2/20). 30/8 FEC-T. #1. Bucks
Gold63/MX. 30/8 no details. #1. No details
Pips64/WLE ER/PR/HER2- 30/8 FEC. #1. Cheshire


PTB/no details. 3/9 FEC-T. #1. Wrexham
Tracey46/no details. 3/9 FEC-T. #1. No details
Ally51/no details. 3/9 no details. #1. No details


hg12/no details. 4/9 FEC-T. #1. No details
Katepb/no details. 4/9 ???? #1. No details


Beam67/WLE gde3. 6/9 FEC-T. #1. No details
Thebatman/MX/SLN(0/2)gde2ER8-PR3+HER2- 6/9 TC. #1. E. Anglia


Barbarella63/MX ANC(2/16)gde2 ER+PR/HER2- 9/9 FEC-T. #1. Lincoln
Frenchfancy/MX/ANC(8/22)gde3 ER/PR+HER2- 9/9 FEC-T. #1. Chester


Hazey85/MX/ANC/(24/43)gde3ER/PR/HER2+. 11/9 #1. Warwicks

Lulu34/TBNC lung mets. ?? CARBO-T. #1. Unknown


Cinderssarah/WLE/ANC(1/16)gde2ER+ No date yet.

NIkki49/MX/ANC(0/11)gde3ER/pR/HER2- ". ". #1 Fareham


Elma55/MX/ANC(12/15)gde3ER/PR/HER2- ??? FEC-T #1 Chichester

Bonnie8862/MX/ANC(14/16)gde3HER2+\ER/PR- ". ". Gatwick

Samjs/WLE. ". ". Northants

Sarahsomething/MX/ANC. ". ". Berkshire

Jinxy12. Kent

Bonellie/MX/ANC(4/7)gde2 ER+|HER2? ". ". Unknown

Austigirl/MX. No other details
Barbarella63
Member

Re: Starting chemo in September???

Ok I'm crap at Facebook groups clearly!!! I have made it secret and I think that's why no one else can see the link! Works perfectly for me lol sadly I don't know how to change it from secret so if you send me your Facebook names I should be able to add you....fingers crossed if anyone is good at secret groups....that's you Lulu!!!!! P,ease tell me how to sort it ta xxxxxxxx
elma55
Member

Re: Starting chemo in September???

Hi Cinderssarah, sorry I almost missed your late night post yesterday cos it’s been so busy on here today. So you’ll be having chemo with the rest of us, much better that they throw everything they can at it, and as you say it means you get to stay with us lovelies! xx

 

Jo, thanks for all your tips especially the one on checking our temperature at different times of the day BEFORE chemo starts so that we know what's normal for us - brilliant idea!  No I'm not dunking  just yet, hoping it will be 24th September but still waiting for confirmation.

 

Nikki - good luck on Monday with your onc appointment and scan results – hope the seroma is behaving itself now? Also Samjs - hope you can squeeze a week away before your start date – my onc was fairly flexible with me as long as further treatment started within 12 weeks from surgery.  Bonnie, you too – I’m Grade 3 TN with large tumour and high nodal involvement and my scans came back clear, easy for me to say but please don’t worry xx

 

Hello Kate, welcome aboard!

 

PTB have fun hunting for those unicorns tomorrow.

 

Thanks Lulu for all your tips on possible side effects – fresh pineapple always makes my mouth sore so will be interesting to see what chemo and fresh pineapple does to it, ho-ho xx

 

Looks like a starry night tonight, sleep well all xx

 

Bonnie8862
Member

Re: Starting chemo in September???

Welcome katepb ..

Pleased most people who have been for the first calling are doing ok. I had visions of being stuck in bed for days or laid up in hospital ! Imaginings cause my mind to go a bit crazy ..

I have my onc appt on Monday and boy am I scared . My BCN has try'd. To prepare me for it as I had large lymph node involvement and her2+ and at least two grade three tumours .. Have now had to had bone scan and body scan and have been to told they are doing them for a reason .. Bloody brilliant get the coffin ready !! I'm not giving up that easily .. Bring on the chemo bring on the rads and herceptin and I will deal with it .. After all we don't really have a choice .. Hey ho onward and upwards ..

I am on Facebook but the link didn't work for me ..

Take care stars one and all


gold63
Member

Re: Starting chemo in September???

Hi pips64
I feel ok still after my first dunking yesterday- even having cheeky glass of wine BUT I have drink plenty of water over the last few weeks and continue to do so - sure this is helping in heaps. (big glass in morning first thing to flush you out!)
Also made lots of different types of soups
and just eating small amounts but regular.
Really hope you feel better from the nausea soon. xxx
gold63
Member

Re: Starting chemo in September???

Hi KatePB - welcome to the group.
Not good to be having the treatment as you say, but we can lean on each other and WE WILL get each other though this.


Big hugs xx
Guest user
Not applicable

Re: Starting chemo in September???

Hi Kate and welcome to the Stars. Hope we can be of some support to you as we battle through the next few months sharing the ups and downs, tears and giglgles. Take care and keep in touch and let us know how you are getting along. x
Hazey_85
Member

Re: Starting chemo in September???

Hi Kate welcome like the other stars say hope we can all be here to support you and get through this together.

Ooh thanks samjs haven't tried TK Maxx yet, don't blame you for wanting to get away as you don't know when you're going to feel well enough to go next.

jo- like you I've been caught out a few times too and have usually left my bra downstairs with 'comfy' in when ive got fed up of it so people dont know where to look either at my lop sided chest or bra hanging over the door ha ha. Either that or my little girl is trying to wear it on her head when people are round ha ha.
Hope your evening remains restful.
Barbs-I tried clicking on that link but it doesn't work you may have to add ppl to the group to see it.

Xxx
Lulu34
Member

Re: Starting chemo in September???

Hi ladies

Thanks for all your comments.

Barbarella happy for you to add my info to your itenerary.... Not sure of dates yet for chemo.... But lung procedures on 12th.

Cant get your FB link to work barbrella


Im in loads of FB groups.... Like breast friends, BC chatter which are general groups also edinburgh breast buddies and have contacts with some other local fb groups. For those 45 and under there's the younger breast cancer network... a couple of groups for mets and recurrence girls... Also some for Tnbc and brca girls.... If anybody wants to join any other groups please drop me a wee message.

Toothbrush wise i got a baby one because it was soft but actually the plastic head was too big for the small amount of brustles and kept jabbing myself so just got a nice compact head adults one with soft bristles.... And childrens toothpaste or gel type ones as strong minty ines felt like they were burning my mouth.

I had a very sore mouth on tax and used bonjela for ulcers, fluconazole and nystatyin for thrush, difflam rinse to prevent infection, and biotene gel to help make my mouth moist.... My mouth actually became quite puffy and enflammed and it was like my tongue didnt quite fit in my mouth..... I tried pinapples which a lot of folk find really helps but it was kinda stingy for me so i avoided it.

Anti sickness meds.... I would say take regulary as prescribed as it does really help keep things under control andit you find they arent helping get back in touch with your unit or gp asap and dont suffer in silence.

Take care starries xxxx