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Starting chemo in September???

Barbarella63
Member

Re: Starting chemo in September???

Nice plug girls xxxxxxx
frenchfancy
Member

Re: Starting chemo in September???

Hi Julo,
I'm so glad you've found us here, though not so pleased about the reason why you've had to join us. It's an awful thing to happen to anyone and believe me, we all understand exactly what you must be feeling right now. I'm sure everyone here will be as supportive as they have been so far. A more understanding, friendly, funny group of girls you'll struggle to find and with them my journey so far has been so much more bearable.

Regards your PICC line, I had mine fitted 3days before my first round (about 2-3wks ago). I made the decision to have as the thought of them searching for a suitable vein every time I have a treatment or they need blood etc was unthinkable. Virtually non existent! I truly thought a PICC would be my best friend and in a lot of ways it is. It doesnt really grt in the way as they fasten it down securely and put padding and dressing on to avoid you catching it. I have a district nurse that comes to flush it weekly which keeps it from blocking and to ensure no infections develop. When they put it in initially it can take a little while to make sure they get it in just the right position, and they will do a chest X-ray to confirm this. It's worth making sure you leave plenty of time from beg to end.

There some things I wish I'd known before hand though. They may only provide temporary covers so that you can have a shower or bath, so you'll need to get a more substantial one (found quite easily online). Also, as mine is on the opposite arm to surgery site they are now not able to take blood pressure from either arm. Had lots of fun trying to do it on my leg recently!!! That's a story for another day. And also it's worth investing in a heat pad of some description as they advised to apply gentle heat to your upper arm 3x daily to avoid mechanical phlebitis (again you can find info online).

Hope this helps Julo, sorry so long winded.

It might help to know, though I'm sure someone will already have mentioned it to you (Barbarella63!!!) that there is also a secret Facebook group which I think nearly everyone here belongs to now. It's another, very fun and relaxed way of getting the same advice, experience and all round knowledge from all the ladies AND with lots of hilarious extras to go with it. As I said, could not have coped so far without it. if you want to join, send a Private message to Barbarella with your real name and she'll get you sorted. If you don't already have FB, it's worth setting up just for this. I can reassure that everything through that group is TOTALLY private & will not be seen by anyone you don't want!!

Stay strong, keep smiling and welcome to the September Stars xxxx
Lulu34
Member

Re: Starting chemo in September???

And to whoever was asking about injections in the tummy.... Not everybody gets them each unit has their own protocol.... They are to boost your blood cells becuase the chemo depletes them and you can be more more prone to infections and the injection help to make you less likely to get infections

Some units will wait and see if your bloods are rubbish and then give them with your next cycle, some will give routinely on taxotere but not on fec. Some will give routinely on fec and on tax.

There are more than one type of injection... Some are smaller doses which you get or are given for 5,7,10,14 days depending on how good or bad your blood levels are.... This can be drugs called filgrastim or leograstim (i think its something like that)

The other type of injection is a one off dose given about 24 hours after chemo..... Its normally called neulasta or peg filgrastim which is a kinda slow release blood cell booster.

Some units encourage yo to do them yourself or get a member of your family to do it.... Some will advice you go to your GP nurse and some might send in a district nurse to do it for you.

I did mine myself when i had tax two years ago..... Hated the thought but the reality wasnt that bad tbh.

The injections are pretty expensive and i think thats why some units wait to see how you respond to chemo before giving them as the neulasta is over £600 per injection so its the most expensive option and the daily ones are about £30-50 a shot.... So five daily dose is a lit cheaper than the one-off dose.

Dont know that id like to inject myself more than once a cycle!

Welcome to the new ladies... Do come and join us on FB... Its very active and interactive!
Nikki49
Member

Re: Starting chemo in September???

Fec 1 Day 13
Welcome Julo to the September Stars, all the stars are a wonderful bunch, as you can see Barbarella63 keeps us all nicely organised :-). Please consider joining us on fb, it's super secret, lots of advice and plenty of giggles xx
Guest user
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Re: Starting chemo in September???

Hi Julo
Good to meet you ... I only joined a few days go and the ladies here are lovely, supportive and whacky in a wonderful way.
I'm starting 6 xFEC tomorrow with picc line but I wasn't given the choice. Having line put in tomorrow so will let you know xx
Barbarella63
Member

Re: Starting chemo in September???

Lisabeth up tomorrow for everyone's info xxxx
Barbarella63
Member

Re: Starting chemo in September???

Julio welcome to the group so sorry you too are in this awful situation but we are all here to help each other and you won't find a nicer group of girls trust me! You are not alone on the 26th Kraftireader is having number 2 that day and will be virtually holding your hand 😃 I don't have a picc line I'm a good old fashioned cannula girl, but I found the actual experience quite underwhelming, I think I expected to spontaneously combust when they were putting it in! I had 2 syringes full of red stuff that the nurse sat and put in didn't feel a thing, then they put up a drip thingy and the other part which was a clear liquid and that was dripped in slowly for an hour, felt a bit stuffy in the nose at one point but that was all. Had a cup of tea then it was all over. Went and had the obligatory red pee then went home! So really nothing to fear, I sat in a big room with lots do other people all getting their own cocktail mis, everyone was very cheerful and chatty not what I'd expected at all! They give you a shed load of meds to take home with you, it's like leaving the birthday with a party bag lol! Any questions you think of write em down and ask on the day the nurses are very helpful. Are you gonna use the cold cap?i decided not too couldn't bear the thought of being there for hours and then not being able to wash your hair more than once a week and no hair dryer or straighteners, thought I'd rather be bald and have a nice wig than have dirty unkept hair sitting there, but if you do use it I believe it's quite successful for a lot of people!! By the way gotta mention this ....have you got Facebook? If not get it and join us in our secret group September superstars on there, it's lively amusing helpful supportive and fun with photos of us with and without hair and lots of other things and it's just a bit more personal. Please think about it and if you want in (29 out of 31 people on this page are in it) send me a message with your real name and I'll send you the link for you to request to join. I've added you to the list welcome aboard the star ship xxxxx



NME/DIAG. DATE/TMNT. NUMBER. LOCATION

Rachelr/WLE gde3 ER/PR/HER2- 29/8 FEC-T. #1. Reading

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


Bonnie8862/MX/ANC(14/16)gde3HER2+\ER/PR- 12/9 #1 Gatwick

Avonlady/WLE gde3 18/9. #2 Notts
Seaview. 18/9. #1

Cinderssarah/WLE/ANC(1/16)gde2ER+ 20/9. #1. Abergavenny
Jo43/WLE/ANC(2/20). 20/9 FEC-T. #2 Bucks
Gold63/MX. 20/9no details. #2 No details
Pips64/WLE ER/PR/HER2- 20/9 FEC. #2. Cheshire

Lisabeth. 23/9. #1

Ally51/no details. 24/9 no details. #2 Solihull
Elma55/MX/ANC(12/15)gde3ER/PR/HER2- 24/9 FEC-T #1 Chichester
Tracey46/no details. 24/9 FEC-T. #2. Hertfordshire
Susie-g MX/ANC 8/12 gde3 HER2+. 24/9 FEC-T. #2. W Sussex

Maseo/WLE/ANC4/18gde1/ER/PR+HER2- 25/9 FEC-T. #2. Coventry
Hawkie.gde3 HER2+ 25/9. T/Herceptin/Perjeta #1. Newcastle
KatePB. 25/9. #2. Sheffield
PTB/no details. 25/9 FEC-T. #2 Wrexham

Kraftireader. 26/9. #2
Julo. 26/9. #1

Samjs/WLE. 27/9 FEC #1 Northants
Thebatman/MX/SLN(0/2)gde2ER8-PR3+HER2- 27/9 TC. #2. E. Anglia
HEvg123/MX/ANC(3/?). 27/9 FEC-T. #2 Kent coast
Beam67/WLE gde3. 27/9 FEC-T. #2 Gloucester


Barbarella63/MX ANC(2/16)gde2 ER+PR/HER2- 30/9 FEC-T. #2 Lincoln
Frenchfancy/MX/ANC(8/22)gde3 ER/PR+HER2- 30/9 FEC-T. #2. Chester
Helenr51. MX/ANC 30/9 FEC-T. #1

NIkki49/MX/ANC(0/11)gde3ER/pR/HER2- 1/10 FEC-T. #2. Fareham
Blue-topaz/MX/ANC2/? ER/PR+HER2- 1/10 FEC-T. #2 Wigan
Lulu34/TBNC lung mets. 1/10 EC-/Genetipib? #1. Edinburg

Hazey85/MX/ANC/(24/43)gde3ER/PR/HER2+. 2/10 #2. Warwicks

Naturegirl15. 4/10. #2
Pots14. WLE gde3 ANC 5/12 4/10. FEc-T #1

Austigirl/MX. 8/10 FEC-T. #2. Unknown

Sarahsomething/MX/ANC. 10/10. #2 Berkshire



Jinxy12. Kent
Bonnellie/MX/ANC(4/7)gde2 ER+|HER2? ". ". Unknown

elma55
Member

Re: Starting chemo in September???

Hi suzzie-g, I'm from West Sussex too. Had MX/ANC in July and start my first cycle of FEC-T on Tuesday. I have a seroma but haven't had it drained - It is smaller than it was but still a nuisance as it restricts movement. The group has been a great help to me, not only for support, but for information based on personal experiences. There's also a private Facebook group version which is less impersonal and good humoured. Where are you having treatment? I'm at Portsmouth because my local chemo unit doesn't treat breast patients. xx
Guest user
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Re: Starting chemo in September???

Hi Lisabeth
I had a daily course of seven injection starting two days after chemo, also for the production of white blood cells. My son did mine, alternate sides of tummy. Not painful at all. xx
Guest user
Not applicable

Re: Starting chemo in September???

Hi I'm starting FEC chemo on Thursday 26th so it would be good to join the September stars! Feeling apprehensive and any comments on what happens , how it feels etc would be appreciated. I opted to have a PICC line put in, how does this feel, does it get in the way?? Argh so many questions going around my head!
Cinderssarah
Member

Re: Starting chemo in September???

Chemo brain means i'm struggling to follow so many new posts and remember who's who. Welcome to the newbies and i echo everyone elses suggestion to join us over on the dark side 😄 xx
Barbarella63
Member

Re: Starting chemo in September???

Don't worry about the injections they're fine honestly!! Austigirl so nice to hear from you again, glad you're doing ok, I'll add you to the list for your next one, I've guessed the date hope its right!!



NME/DIAG. DATE/TMNT. NUMBER. LOCATION

Rachelr/WLE gde3 ER/PR/HER2- 29/8 FEC-T. #1. Reading

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


Bonnie8862/MX/ANC(14/16)gde3HER2+\ER/PR- 12/9 #1 Gatwick

Avonlady/WLE gde3 18/9. #2 Notts
Seaview. 18/9. #1

Cinderssarah/WLE/ANC(1/16)gde2ER+ 20/9. #1. Abergavenny
Jo43/WLE/ANC(2/20). 20/9 FEC-T. #2 Bucks
Gold63/MX. 20/9no details. #2 No details
Pips64/WLE ER/PR/HER2- 20/9 FEC. #2. Cheshire

Lisabeth. 23/9. #1

Ally51/no details. 24/9 no details. #2 Solihull
Elma55/MX/ANC(12/15)gde3ER/PR/HER2- 24/9 FEC-T #1 Chichester
Tracey46/no details. 24/9 FEC-T. #2. Hertfordshire
Susie-g MX/ANC 8/12 gde3 HER2+. 24/9 FEC-T. #2. W Sussex

Maseo/WLE/ANC4/18gde1/ER/PR+HER2- 25/9 FEC-T. #2. Coventry
Hawkie.gde3 HER2+ 25/9. T/Herceptin/Perjeta #1. Newcastle
KatePB. 25/9. #2. Sheffield
PTB/no details. 25/9 FEC-T. #2 Wrexham

Kraftireader. 26/9. #2

Samjs/WLE. 27/9 FEC #1 Northants
Thebatman/MX/SLN(0/2)gde2ER8-PR3+HER2- 27/9 TC. #2. E. Anglia
HEvg123/MX/ANC(3/?). 27/9 FEC-T. #2 Kent coast
Beam67/WLE gde3. 27/9 FEC-T. #2 Gloucester


Barbarella63/MX ANC(2/16)gde2 ER+PR/HER2- 30/9 FEC-T. #2 Lincoln
Frenchfancy/MX/ANC(8/22)gde3 ER/PR+HER2- 30/9 FEC-T. #2. Chester
Helenr51. MX/ANC 30/9 FEC-T. #1

NIkki49/MX/ANC(0/11)gde3ER/pR/HER2- 1/10 FEC-T. #2. Fareham
Blue-topaz/MX/ANC2/? ER/PR+HER2- 1/10 FEC-T. #2 Wigan
Lulu34/TBNC lung mets. 1/10 EC-/Genetipib? #1. Edinburg

Hazey85/MX/ANC/(24/43)gde3ER/PR/HER2+. 2/10 #2. Warwicks

Naturegirl15. 4/10. #2
Pots14. WLE gde3 ANC 5/12 4/10. FEc-T #1

Austigirl/MX. 8/10 FEC-T. #2. Unknown

Sarahsomething/MX/ANC. 10/10. #2 Berkshire



Jinxy12. Kent
Bonnellie/MX/ANC(4/7)gde2 ER+|HER2? ". ". Unknown
Guest user
Not applicable

Re: Starting chemo in September???

Thanks Nikki. Perhaps they'll mention that on Monday ! Have enough flab on my tummy so I won't struggle to find somewhere to stick it.
Nikki49
Member

Re: Starting chemo in September???

The injection is to encourage your bone marrow to produce white blood cells. I had one injection that had to be done 24 to 48 hours after chemo. I know some of the girls have to have more than one, I'm not sure why. It's nothing to worry about you don't feel it, I got my Mum to mine in the flabby part of my tummy.
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Re: Starting chemo in September???

I think I must be really green as to what to expect. I've been told I will have steroid put into picc line at first dose but nothing about any tablets other than anti emetics and haven't been told I need to inject myself with anything. What are the injections for ? Stressing myself a bit !
Guest user
Not applicable

Re: Starting chemo in September???

Hi Austigirl
Lovely to hear from you. And really pleased to know that you are managing to get through the SE's. Let's hope they stay minimal. I have been more than lucky on that score.
Like Nikki says we are quite active over on Facebook too so if you feel like it come and join us over their too. x

Nikki49
Member

Re: Starting chemo in September???

Hey Austigirl welcome back, we have set up a super secret Facebook group, easier to post & we have a right giggle, if you fancy it PM babarella63 & she'll get you joined x
Austigirl
Member

Re: Starting chemo in September???

Hi ladies. It's been a while but I'm here finally. Had my first FEC on 17th sept. SE not been too bad really although not at all a pleasant experience. I had bit of sickness on my first night but just nausea since then. The worst for me has been the steroid SE. I haven't known where to put myself - can't sit down, can't stand up, been dragging other half out for many walks just to keep moving! Took the last of those yesterday so hopefully things will improve tomorrow. At the moment can't imagine how I'm going to get through 5 more of these but everyone else manages so I'm sure I will too.

Hope all you ladies are doing ok, nice to know that we are in this poop together and will come out the other side most importantly. I find it comforting to hear of people who are on the other side of their treatment right now as it gives me hope xxxx
Austigirl
Member

Re: Starting chemo in September???

Hi ladies. It's been a while but I'm here. Had 1st FEC on 17th sept. SE not been too bad I guess although really not enjoying it much. Had sickness on my first night but just nausea since. The steroids have been driving me nuts - dont know where to put myself most of the time. Can't sit down, can't stand up, been going for many walks! Took my last does yesterday morning so hoping this will pass very soon. Not eating much really but again that seems to be getting slightly better each day. At the moment wondering how I will get through another 5 of these buts everyone does so I guess I will too.

Hope all you other ladies on here are doing ok. Nice to know we're in it together 🙂 xxxx
hawkie
Member

Re: Starting chemo in September???

Welcome Suzie, sorry you find yourself here though.

 

Can recommend the FB page, might make you blush though lol!  But aside from blushing, or is it a hot flush, its very helpful and amusing.  Ive not started chemo yet, got that pleasure on Wednesday so Im a virgin still!

 

Jayne xx

Guest user
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Re: Starting chemo in September???

Hi there Suzie, welcome to the September Stars where you will never be alone. These stars are the best virtual friends you will ever have. Their support, help, wit and wisdom is relentless and without them my days would be a lot harder to deal with.
I too started my chemo on the 3rd but my next will be 25th. I am doing chemo first with WLE and rads to follow.
Like Barbs and Nikki have said we are on Facebook too where we really do get down to the nitty gritty. Hope you can join us there too.
Keep up the fight, Star! xx
Nikki49
Member

Re: Starting chemo in September???

Hi Suzie, welcome. I too have been troubled by seroma problems - have been drained 4 times , one session he got almost 800mls!! Last week was 480mls couldn't have it done this week cause this is my low immune week however thankfully it isn't too bad at the moment but I am booked for next week hopefully for the 5th and last time. As Barb says a lot of us are using fb, easier to use and we do have a good giggle would be nice to see you there xx
Barbarella63
Member

Re: Starting chemo in September???

Sue sooo glad you have put something on here, it's important to know you are not alone!! Welcome aboard the star ship, sorry you are in the awful position of having to join us but we will get through it together!! I will add you to the ever growing list so we don't miss you when you get your next hot chemo date on Tuesday. You are not going alone Ally Ema and Tracey are going with you that day all up for number 2 apart from Elma who is still a chemo virgin lol. I know I keep banging on but have you got Facebook? Please consider it if not and get it 28 of the stars are on there and the banter and support is second to none. Dm me your real name and I'll send you the link and look out for you, hope you join us xxxxx



NME/DIAG. DATE/TMNT. NUMBER. LOCATION


Rachelr/WLE gde3 ER/PR/HER2- 29/8 FEC-T. #1. Reading

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


Bonnie8862/MX/ANC(14/16)gde3HER2+\ER/PR- 12/9 #1 Gatwick

Avonlady/WLE gde3 18/9. #2 Notts
Seaview. 18/9. #1

Cinderssarah/WLE/ANC(1/16)gde2ER+ 20/9. #1. Abergavenny
Jo43/WLE/ANC(2/20). 20/9 FEC-T. #2 Bucks
Gold63/MX. 20/9no details. #2 No details
Pips64/WLE ER/PR/HER2- 20/9 FEC. #2. Cheshire

Lisabeth. 23/9. #1

Ally51/no details. 24/9 no details. #2 Solihull
Elma55/MX/ANC(12/15)gde3ER/PR/HER2- 24/9 FEC-T #1 Chichester
Tracey46/no details. 24/9 FEC-T. #2. Hertfordshire

Maseo/WLE/ANC4/18gde1/ER/PR+HER2- 25/9 FEC-T. #2. Coventry
Hawkie.gde3 HER2+ 25/9. T/Herceptin/Perjeta #1. Newcastle
KatePB. 25/9. #2. Sheffield
PTB/no details. 25/9 FEC-T. #2 Wrexham

Kraftireader. 26/9. #2

Samjs/WLE. 27/9 FEC . #1 Northants
Thebatman/MX/SLN(0/2)gde2ER8-PR3+HER2- 27/9 TC. #2. E. Anglia
HEvg123/MX/ANC(3/?). 27/9 FEC-T. #2 Kent coast
Beam67/WLE gde3. 27/9 FEC-T. #2 Gloucester


Barbarella63/MX ANC(2/16)gde2 ER+PR/HER2- 30/9 FEC-T. #2 Lincoln
Frenchfancy/MX/ANC(8/22)gde3 ER/PR+HER2- 30/9 FEC-T. #2. Chester
Helenr51. MX/ANC 30/9 FEC-T. #1

NIkki49/MX/ANC(0/11)gde3ER/pR/HER2- 1/10 FEC-T. #2. Fareham
Blue-topaz/MX/ANC2/? ER/PR+HER2- 1/10 FEC-T. #2 Wigan
Lulu34/TBNC lung mets. Results 1/10 EC-/Genetipib? #1. Edinburg Hazey85/MX/ANC/(24/43)gde3ER/PR/HER2+. 2/10 #2. Warwicks

Naturegirl15. 4/10. #2
Pots14. WLE gde3 ANC 5/12 4/10. FEc-T #1

Sarahsomething/MX/ANC. 10/10. #2 Berkshire



Jinxy12. Kent
Bonnellie/MX/ANC(4/7)gde2 ER+|HER2? ". ". Unknown
Austigirl/MX. No other details



Guest user
Not applicable

Re: Starting chemo in September???

Hello All, I am new to this website but have been reading everyones postings, and thought I would like to join please, there is something comforting in knowing you are not alone on this horrible journey.  I am 46 yrs, living in west sussex, I was Dx in June had a MX in July with delayed reconstruction, I have had a recurring seroma that will not go away, bain of my life! been drained 3 times, last time was last week following a trip to a & e as it looked infected, wasn't thank goodness. I had anc at the time of MX. On seeing the oncologist in August I was told I had 3 lumps removed totalling 5.2cm all grade 3 I am HER2 + est+ 8/12 positive nodes  the breast tissue that was removed showed alot of pre-cancerous cells, so my treatment includes chemo, 6 cycles FEC-T, radiotherapy  3 weeks, 18 rounds herceptin, 5 years tamoxifan, reconstruction, followed I should imagine by some sort of rehab as I have never taken so many drugs.

 I had my first chemo on the 3rd of September where my vein was so small that it took 1 1/2  hours to adminster the red juice, so last tuesday I had a port fitted, surgeon said I had the worst veins he had seen all year! thanks  but didn' t fill me with pride. Anyway I have second dose on tuesday, I have clipped my hair off as walking around shedding hair like the dog, and it was very uncomfortable scalp quite sore, thought losing my hair would really bother me but hasn't yet.

I am off work for the duration of chemo as I work with the under fives and families, and little ones are very good at sharing their germs around, been popping in on good days to stay in touch and see the world going on as normal.

My se's from the chemo have not been to bad, not pleasent but I have survived, had alot of trouble with the 5 days of injections, bone pain and motion sickness even when lying down, so I was given drugs to treat these se, and then more to treat the se of the se drugs, seems mad to me , but I was told that the onc will be able to give me a different type of injection, which may well suit me better.  Here's hoping.

Hope everyone elses se are manageable!! Sue                 

Barbarella63
Member

Re: Starting chemo in September???

Morning lovely stars! Gosh you lot have been up having a party without me!! Sorry some of you have been awake in the early hours, it's always the worst time when your brain goes into overdrive and thoughts run away with you! Hope you managed to get some sleep and hopefully still pushing up a Z or 2. Now. Pots I'll update the list with number 2 you're prob buzzing from the steroids which is why you're up in the wee hours, ff what's your excuse???? Seriously I hope you're ok lovely!! Lulu....think I said it all on Facebook!! But I know that you are a fighter and even when you are feeling too tired to be that fighter I hope you will come to us for the shoulder that we all need sometimes, although after seeing on Facebook that you have over 1000 friends I'm sure they will be queuing round the block to give as much help and support as they can, but you know what I mean. Please continue to keep us in the loop we don't wanna lose you from the stars! Best you get a few more pink wigs, can't be seen in the same one everytime and with that schedule you're gonna need a few!!!! PTB morning!!! You been up editing photos by ant chance??? Or just dreaming about them!!! Have a good day stars - dare I mention.........HAVE A SERIOUS THINK ABOUT FACEBOOK!!!!
Out of 34 active members on here 28 are on the Facebook group and it's very active xxxxx



NME/DIAG. DATE/TMNT. NUMBER. LOCATION


Rachelr/WLE gde3 ER/PR/HER2- 29/8 FEC-T. #1. Reading

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


Bonnie8862/MX/ANC(14/16)gde3HER2+\ER/PR- 12/9 #1 Gatwick

Avonlady/WLE gde3 18/9. #2 Notts
Seaview. 18/9. #1

Cinderssarah/WLE/ANC(1/16)gde2ER+ 20/9. #1. Abergavenny
Jo43/WLE/ANC(2/20). 20/9 FEC-T. #2 Bucks
Gold63/MX. 20/9no details. #2 No details
Pips64/WLE ER/PR/HER2- 20/9 FEC. #2. Cheshire

Lisabeth. 23/9. #1

Ally51/no details. 24/9 no details. #2 Solihull
Elma55/MX/ANC(12/15)gde3ER/PR/HER2- 24/9 FEC-T #1 Chichester
Tracey46/no details. 24/9 FEC-T. #2. Hertfordshire

Maseo/WLE/ANC4/18gde1/ER/PR+HER2- 25/9 FEC-T. #2. Coventry
Hawkie.gde3 HER2+ 25/9. T/Herceptin/Perjeta #1. Newcastle
KatePB. 25/9. #2. Sheffield
PTB/no details. 25/9 FEC-T. #2 Wrexham

Kraftireader. 26/9. #2

Samjs/WLE. 27/9 FEC . #1 Northants
Thebatman/MX/SLN(0/2)gde2ER8-PR3+HER2- 27/9 TC. #2. E. Anglia
HEvg123/MX/ANC(3/?). 27/9 FEC-T. #2 Kent coast
Beam67/WLE gde3. 27/9 FEC-T. #2 Gloucester


Barbarella63/MX ANC(2/16)gde2 ER+PR/HER2- 30/9 FEC-T. #2 Lincoln
Frenchfancy/MX/ANC(8/22)gde3 ER/PR+HER2- 30/9 FEC-T. #2. Chester
Helenr51. MX/ANC 30/9 FEC-T. #1

NIkki49/MX/ANC(0/11)gde3ER/pR/HER2- 1/10 FEC-T. #2. Fareham
Blue-topaz/MX/ANC2/? ER/PR+HER2- 1/10 FEC-T. #2 Wigan
Lulu34/TBNC lung mets. 1/10 EC-/Genetipib? #1.Edinburgh Hazey85/MX/ANC/(24/43)gde3ER/PR/HER2+. 2/10 #2. Warwicks

Naturegirl15. 4/10. #2
Pots14. WLE gde3 ANC 5/12 4/10. FEc-T #1

Sarahsomething/MX/ANC. 10/10. #2 Berkshire



Jinxy12. Kent
Bonnellie/MX/ANC(4/7)gde2 ER+|HER2? ". ". Unknown
Austigirl/MX. No other details



















Jinxy12. Kent
Bonnellie/MX/ANC(4/7)gde2 ER+|HER2? ". ". Unknown
Austigirl/MX. No other details
Guest user
Not applicable

Re: Starting chemo in September???

Good morning Stars
Seems to have been a fair bit of activity here during the night and the early hours. Hope you managed to get some sleep. To all the Stars waking up after their dunking yesterday, I hope the SE's are being kind to you (and staying away). Just make sure you all rest up and get those fluids inside you know it makes sense!
Love to all the Stars out there who we haven't seen shining here for a while. I hope you are all ok.
Lulu, so sorry the results weren't the best but let's hope this new drug works well for you. Seems like you have rather a busy schedule ahead but whenever you get started you will always be our Superstar. Love and hugs to you xx
Nikki, don't go too mad. It's the weekend after all! x
On that note I hope all the Stars have the best weekend they can. love to all. xx
Nikki49
Member

Re: Starting chemo in September???

Fec 1 Day 12
Good morning stars, I hope that yesterday's dunkees had a good night and se's remain minimal. I didn't sleep too well last night 😞 I have absolutely no idea why..... Busy brain that's all. So thought getup and try to get more active today whilst I feel good as I'm beginning to put weight on sitting around, eating and watching too much trash tv.
Hope you all have a good day, take care xx
Nikki49
Member

Re: Starting chemo in September???

Lulu, {{hugs}} what can I say other than sorry about your cr4ppy results, this trial drug does sound promising and it's certainly about time something went your way xxx
Guest user
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Re: Starting chemo in September???

Hi Lulu, can't sleep so scanning the forums and read your post about your treatment and trial. Wow - you will definitely need a personal organiser to keep track! It sounds promising though, so could be really good news. Not surprised to hear how you've been feeling, sometimes this disease is just massive, so be very gentle with yourself. Whatever, you are very definitely a September Star!
frenchfancy
Member

Re: Starting chemo in September???

Hi Pots,
How are you feeling now, a few days after round 1? Hope any se's are settling down for you. I don't blame you for going for portacath, if I'd had it as an option would've taken it hands down!! I'm like you with virtually non existent veins, probs with bloods/CT contrast/etc so when the chemo nurses said I could have a PICC thought it was going to be a godsend. How wrong was I? After a temp spike earlier this week, was told to go to A&E for bloods, checks & the like. However instead if using the PICC they proceeded to 'attempt' several times i may add to get a cannula in...not an easy task either. When I asked why they couldn't use the PICC they told me nobody there had had the specialist training needed to be able to use it!!! Bl00dy joke!!! Needless to say if I can avoid that dept again I will be doing so. Stick to those that can use it properly.

However, with regards to your concern about everyday convenience of having it, not really an issue. Other than the fact you have to keep it clean & dry, which you can get items to assist with this, it doesn't get in the way. The district nurses comes to flush it weekly & redress it with plenty of padding & coverage to keep it secure. The one thing I would urge anybody to consider is how blood pressure would be taken if, like me, it's on the opposite arm to surgery site (for obvious reasons). I now have the problem of them only being able to do BP on my one good leg as I have lymphodeama in the other. Oh we did laugh!!!
Don't know if this helps at all for anyone considering PICC but thought it worth a mention.

Hope you manage to get some sleep Pots, as well as any other night birds xx
Pots14
Member

Re: Starting chemo in September???

Barbs - my next one is on the 8th Oct. Think I only got offerred alternative to cannua because of the trouble they had with CT (gave up with cannula); chemo nurses took one look at veins and said, nope. Normally they'd do a picc line, but I was v. worried about yanking it (can be very careless and also very active lifestyle - normally).Was offered portocath straight away (just couldn't fit it in for 1st treatment). Felt quite guilty because I know it's v. expensive, but after my first dunking  and them having trouble again I just feel relieved it's going in next week. Presumably you're having a chemo review before your 2nd why don't you have a chat with them about the vein alternatives?

 

Can't sleep - hope the rest of you are snoring like babies!

Pots14

Pots14
Member

Re: Starting chemo in September???

Oh Lulu - don't really know what to say, just the biggest hug to you. If I'm honext it's probably a fear we all have, but i'm so sorry it's happened to you. just puts everything into perspective and to grab every moment while we can and don't waste a second! Trial sounds complicated, but at least it's a positive step that they can still treat. Hope you're not up in the middle of the night and are managing to get some rest to fight another day. LOL (old fashioned one!)

Pots14

Lulu34
Member

Re: Starting chemo in September???

Hi stars got my results today and its confirmed as lung mets which they are treating as triple negative as they dont think these is enough tissue left to test for her2 but its only a very small percentage that change from her2 neg primary to her2 pos mets so its unlikely and wouldnt change the treatment anyway.

Think im def gonna go woth the ENCHANT trial which is using a drug called ganetespib and is showing some promising results in both TNBC and lung cancer so hopefully that means it will work wonders on TNBC lung mets!

A bit sad that this is actually a reality now and no 1 in a million chance it could be some weird virus from outer space that they can clear up with antibiotics.... Just need to hope that the ganetespib is the miracle cure.... Or at least the miracle "massively slowing down progress" drug. Iv actually been a bit upset today for the first time in a month but will just ned to have a good sleep, dust myself down, and come out fighting to kick the barsteward into touch!

The schedule for the drug is quite intense .... Its given on a tuesday and thursday by IV for three weeks then i get a week off then three on 1 off again for 12 weeks initially or longer until it stops working.

Also need loads of ongoing checks so lots of scans, ecgs, bloods, obs etc

I have this very complex time table of events eg ecgs on wk 1 of each odd numbered cycle, chest and abdo ct every 6 weeks during trial for a year, bloods week 1 and week 2 of every cycle, tumour markers week 1 of every cycle... Def need the time table lol.

Seeing my onc next wed to hopefully sign up for it and get all my pre trial scans sorted too.

I was given a provisional starting date of 1st oct but still a star at heart!
Barbarella63
Member

Re: Starting chemo in September???

Sarah somehow I missed you off for yesterday I am truly sorry but very glad you are ok.i will put you in for 3 weeks time hope that's right as don't want to miss you again. Please think about joining us on Facebook...please pleas its great loads of support and a few laughs too,xxxxx








NME/DIAG. DATE/TMNT. NUMBER. LOCATION


Rachelr/WLE gde3 ER/PR/HER2- 29/8 FEC-T. #1. Reading

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


Bonnie8862/MX/ANC(14/16)gde3HER2+\ER/PR- 12/9 #1 Gatwick

Pots14. WLE gde3 ANC 5/12 17/9. FEc-T #1

Avonlady/WLE gde3 18/9. #2. Notts
Seaview. 18/9. #1

Lulu34/TBNC lung mets. Results 20/9 EC-/Genetipib? #1. Edinburgh
Cinderssarah/WLE/ANC(1/16)gde2ER+ 20/9. #1. Abergavenny
Jo43/WLE/ANC(2/20). 20/9 FEC-T. #2 Bucks
Gold63/MX. 20/9no details. #2 No details
Pips64/WLE ER/PR/HER2- 20/9 FEC. #2. Cheshire

Lisabeth. 23/9. #1

Ally51/no details. 24/9 no details. #2 Solihull
Elma55/MX/ANC(12/15)gde3ER/PR/HER2- 24/9 FEC-T #1 Chichester
Tracey46/no details. 24/9 FEC-T. #2. Hertfordshire
Maseo/WLE/ANC4/18gde1/ER/PR+HER2- 25/9 FEC-T. #2. Coventry

PTB/no details. 25/9 FEC-T. #2 Wrexham
Hawkie.gde3 HER2+ 25/9. T/Herceptin/Perjeta #1. Newcastle
KatePB. 25/9. #2. Sheffield

Kraftireader. 26/9. #2

Samjs/WLE. 27/9 FEC . #1 Northants
Thebatman/MX/SLN(0/2)gde2ER8-PR3+HER2- 27/9 TC. #2. E. Anglia
HEvg123/MX/ANC(3/?). 27/9 FEC-T. #2 Kent coast
Beam67/WLE gde3. 27/9 FEC-T. #2 No details


Barbarella63/MX ANC(2/16)gde2 ER+PR/HER2- 30/9 FEC-T. #2 Lincoln
Frenchfancy/MX/ANC(8/22)gde3 ER/PR+HER2- 30/9 FEC-T. #2. Chester
Helenr51. MX/ANC 30/9 FEC-T. #1

NIkki49/MX/ANC(0/11)gde3ER/pR/HER2- 1/10 FEC-T. #2. Fareham
Blue-topaz/MX/ANC2/? ER/PR+HER2- 1/10 FEC-T. #2 Wigan

Hazey85/MX/ANC/(24/43)gde3ER/PR/HER2+. 2/10 #2. Warwicks

Naturegirl15. 4/10. #2


Sarahsomething/MX/ANC. 10/10. #2 Berkshire

Jinxy12. Kent

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

Austigirl/MX. No other details
Guest user
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Re: Starting chemo in September???

Hi Stars,  just to let you know that I went for my first cocktail hour yesterday (a  bit sick yesterday evening but fine so far today, touch wood).  Thank you to all the stars that have been reporting back, been a big help as I was waiting for mine. Sorry Barbs about your run-in with A&E, hope you are feeling better now.

 

Best of luck to those up next, for what it's worth I found the actual day a weird sort of relief, especially after all the stress about it starting and the nurses were great, explaining everything as they went and making us feel at home.  

And for the record, here's the rest of my details: ANC (3/14) gde3 ER/PR+ FEC-T #1

Barbarella63
Member

Re: Starting chemo in September???

Next up is Lisabeth on Monday xx
Barbarella63
Member

Re: Starting chemo in September???

Hi pots, nether regions feeling much better thanks to the eventual arrival of industrial strength antibiotics hurrah!! Hope you are feeling ok still!! I'm a bit worried about my veins to be honest, only got one available arm due to ANC and after my lovely hospital visits and loads of Cannulas this last fortnight I'm just hoping they are gonna be ok for cocktail number 2 on the 30th!! All looking somewhat bruised at the moment so fingers crossed they recover, as no one has offered a portacath or other such things!!
Glad the list is proving useful, it is good to know who's next etc, don't want to miss anyone at the end of the day!! Do you know when your next one is? Don't forget to let me know and I'll update 👍 xxxxx
KatePB
Member

Re: Starting chemo in September???

Here's wishing everyone a good weekend. Trust you do not get too many side effects, get the rest you need and can eat whatever you fancy.  Hugs to all.  xx

Pots14
Member

Re: Starting chemo in September???

Hi,

thinking of you 2nd timers and hoping you have a reasonable time of it - Jo, Gold and Pips and 1st timer Cinderssarach - hope it goes better than you expect

 

Lisbeth - I also have trouble with keeping up - wouldn't have a hope in hell's chance if it wasn't for Barbs list! Hope you've got something lovely planned for a fun and busy weekend and that everything goes as smoothly as it can do for your 1st.

 

Hawkie - yes it's me with the bad veins. Know what you mean when you get excited over little things. I was so chuffed after my seroma was drained to have an armpit that looked like mine after 2 mnths I ended up showing my14yr old  son who recipricated by showing me his armpit hair (of which he is very proud!)

 

Lulu- you're probably waiting in the hospital now. Sending all my positive thoughts your way

 

Barbs - not sure what we would do without you doing the list. Your nether regions seem to be letting you down somewhat ! Hope all now under control and you're getting a hospital free day.

 

Love to all,

Pots

 

 

 

 

Barbarella63
Member

Re: Starting chemo in September???

Hugs lulu xxxxxxx
hawkie
Member

Re: Starting chemo in September???

hope you get the results you want Lulu, fingers crossed xx
Lulu34
Member

Re: Starting chemo in September???

Hawkie great news about your CT scan..... Its funny what things we get really pleased about.... Like m friends going Yay! Iv got arthritis (not bone mets). Yay! Its just the SEs of tamoxifen making me act like a crazy woman! Im hoping for "yay! hormone positive bc lung mets"

Naturegirl a lot of things on your list i was completely incapable of doing during chemo when i had it before.... Chemo can affect the way you concentrate and your memory and makes you tired so i found things that i didnt need to use my brain too much for were best ..... Planting crops on farmville, easy sudoku , daytime trashy telly like border patrol or how lean is your house... Anything with a plot and id ad it.... What i did do was go to therapy courses at our local maggies centre and found out i could actually do some half decent painting and that was something i could do during treatment.

Lisa i also like sticking needles in other people just dont like it happening to me.... Havent had a picc but had a hickman and it was a bit uncomfy and could feel the sensation of being pulled and tugged and manhandled but not really sore more just pressure and yukky sensation.... But was glad i had it done.

And thanks ladies... I have my list of questions but appt not till lunch time and his clinic is always late so will try and remember go update you all later.


Sending good luck wishes to todays dunkers!

Love and hugs xxxx
Guest user
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Re: Starting chemo in September???

Naturegirl15 - I love your list of things to do to stop the boredom - I'm sure other people will have more suggestions, you should start a thread with it.
Nikki49
Member

Re: Starting chemo in September???

I second that Barbs, fb is so much easier to use, we get to share photos, don't get censored, it's all very secret none of your fb buddies will know or you could open a separate fb account just for the group. No pressure I just feel you're missing out xxx.
Barbarella63
Member

Re: Starting chemo in September???

Well noticed Nikki!! Sorted 👍 gotta shamelessly plug the Facebook group....please please consider it girls, its so good for lifting spirits as we are just a little more lighthearted and amusing as well as all the support stuff!








NME/DIAG. DATE/TMNT. NUMBER. LOCATION


Rachelr/WLE gde3 ER/PR/HER2- 29/8 FEC-T. #1. Reading

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


Bonnie8862/MX/ANC(14/16)gde3HER2+\ER/PR- 12/9 #1 Gatwick

Pots14. WLE gde3 ANC 5/12 17/9. FEc-T #1

Avonlady/WLE gde3 18/9. #2. Notts
Seaview. 18/9. #1

Lulu34/TBNC lung mets. Results 20/9 EC-/Genetipib? #1. Edinburgh
Cinderssarah/WLE/ANC(1/16)gde2ER+ 20/9. #1. Abergavenny
Jo43/WLE/ANC(2/20). 20/9 FEC-T. #2 Bucks
Gold63/MX. 20/9no details. #2 No details
Pips64/WLE ER/PR/HER2- 20/9 FEC. #2. Cheshire

Lisabeth. 23/9. #1

Ally51/no details. 24/9 no details. #2 Solihull
Elma55/MX/ANC(12/15)gde3ER/PR/HER2- 24/9 FEC-T #1 Chichester
Tracey46/no details. 24/9 FEC-T. #2. Hertfordshire
Maseo/WLE/ANC4/18gde1/ER/PR+HER2- 25/9 FEC-T. #2. Coventry

PTB/no details. 25/9 FEC-T. #2 Wrexham
Hawkie. 25/9. #1
KatePB. 25/9. #2. Sheffield

Kraftireader. 26/9. #2

Samjs/WLE. 27/9 FEC . #1 Northants
Thebatman/MX/SLN(0/2)gde2ER8-PR3+HER2- 27/9 TC. #2. E. Anglia
HEvg123/MX/ANC(3/?). 27/9 FEC-T. #2 Kent coast
Beam67/WLE gde3. 27/9 FEC-T. #2 No details


Barbarella63/MX ANC(2/16)gde2 ER+PR/HER2- 30/9 FEC-T. #2 Lincoln
Frenchfancy/MX/ANC(8/22)gde3 ER/PR+HER2- 30/9 FEC-T. #2. Chester
Helenr51. MX/ANC 30/9 FEC-T. #1

NIkki49/MX/ANC(0/11)gde3ER/pR/HER2- 1/10 FEC-T. #2. Fareham
Blue-topaz/MX/ANC2/? ER/PR+HER2- 1/10 FEC-T. #2 Wigan

Hazey85/MX/ANC/(24/43)gde3ER/PR/HER2+. 2/10 #2. Warwicks

Naturegirl15. 4/10. #2


Sarahsomething/MX/ANC. ". ". Berkshire

Jinxy12. Kent

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

Austigirl/MX. No other details
Nikki49
Member

Re: Starting chemo in September???

Happy Friday stars, beautiful sunny morning on the south coast today, hope its nice in your part of the world?
I have just been having a quick look at the list and have noticed Barbs that you have katepb on there twice oops 🙂
Also we do not appear to have heard from Rachelr, hg12 or Bonnie8862 for quite some time , perhaps they have decided the forum is not for them. If you're looking in girls I hope you are ok, perhaps you could let us know so we don't worry.
Have a fab day everyone xx
frenchfancy
Member

Re: Starting chemo in September???

Lulu, think I've already said so, but just in case not, good luck with results tomorrow. Hope it's not what you don't want to hear xx all the other ladies up for a dunk, Jo, Pips & Gold, who know what to expect and cinderSarah, our first timer, really hope l goes smoothly and you come back to us safe & sound xxx

Bonne nuit tout le monde xx 😴😴
Guest user
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Re: Starting chemo in September???

Know how you feel about needles. I take people's blood daily so used to putting needles in people but don't like it being done to me !!
Picc line on Monday !! Is it uncomfortable being inserted ? Nurse in work said it was a little but ok if you have local ??? Something else to look forward to !!
Best of luck to everyone glowing tomorrow and everyone else hope all ticking along ok. I haven't got used to who is doing what yet but will try and keep up ! xx
hawkie
Member

Re: Starting chemo in September???

LOL Mr Hawkie was the same 😉 Not that I can look either though!! Sleep well x
Guest user
Not applicable

Re: Starting chemo in September???

Hi that was same with us yesterday I'm having the canula and the nurse is asking oh if he is ok he just did not look