September 2019 Chemo Starters

[katttz]

Naomi,

I was given two lots of anti sickness this time as well as three lots of painkillers(paracetamol, brufen, codeine).

Ive taken a few painkillers and a couple of anti sickness but nausea hasn’t really been a problem so far.

Abdo cramps when I need the loo are probably the worst thing and I’ve had this with all 3 chemo’s.

Happened in Blackpool today and I just had to dash into a hotel, obviously looking desperate for the loo 😳💩! 
Just explain and I’m sure you’ll be given enough to help should you need them.

Blackpool was fun, first time for the kids but I’m knackered now. So pleased we just drove from Leeds and didn’t stay over. Back home all cosy in my pj’s with a cuppa tea 😊

[Naomi40]

Thank you Sam

Everytime I have chemotherapy that vein becomes no good and I’ve cried so much because it really hurts when they are trying to find a good vein. I’ve been told the port it will be done under local anaesthetic but apart from feeling a bit of pressure or a pulling sensation that it won’t hurt.

[yorkshire_defector]

Naomi

My decision to go port was a jolly good one. The op is quick (max 1 hr) and was painless, its a little painful afterwards but healed within 2 weeks and is now sooo much easier than fannying around playing hunt the vein and am free of "oh dear another one's collapsed" - as my viens were doing.

Unlike the PICC there's no maintenance and you can swim with it.  Mine will be oiked out when I have my surgery.

I'd really recommend it, it is so much quicker as well to take bloods and you'll never need a cannula again (though you may need to go to chemo unit to set it up for any MRI contrast as I found the nurses in the MRI unit weren't trained to do port stuff).

Good luck 

sam x

[Naomi40]

Hi Katttz

Thank you for replying.

 I think the only thing that concerns me more is nausea and vomiting as I have a phobia of being sick. Do you get anti sickness medication before and after treatment.

Have a lovely time in Blackpool, have never been there but my sister says it’s great xx 

[katttz]

Hi Naomi,

I'm one week post docetaxil and I am feeling a few side effects but all manageable with a bit of pill popping. 
Achey joints started yesterday and a little nausea. I’m hoping this will pass in a few days then I’ll be back to ‘normal’ for the final week before it all starts again! 

Off to Blackpool tomorrow as a half term day out for the kids, we were going to  go on the train but decided to drive. It’ll be a long day and  if I feel dodgy  I can always go and flake out in the car for a bit ! 

A port sounds the right way to go Naomi, it must be bloody stressful for you.  Generally , I have ‘good veins’ but I’ve had a few misses. One: it’s painful and Two: you get wacking big bruises.

xx

[Naomi40]

Had my last lot of fec today soon it will be Docetaxel. Today wasn’t a good day, cannula went in but couldn’t take blood and was no different with the 2nd one and thankfully the 3rd one was successful only I have lots of bruises. It’s been decided a port is the best way to go as I’m running out of good veins. 

A little bit anxious about the port being put in but I’m guessing it’s got to be better then this every 3 weeks 

[Naomi40]

Hi Katttz

How did it go with having Docetaxel? 
I hope you are feeling okay.

 I have my last fec treatment tomorrow and my oncologist will let me know if I am having Docetaxel or another chemotherapy treatment instead after that. 

[yorkshire_defector]

Beryl

Hadn't realised you'd been back in hospital, what are you playing at? Have your cancer team not given you the FSG (??) injection things to do yourself?  They've been my saviour since hospital visit post round 1.

Glad you're now out but obviously would like you not to end up there each cycle...the poor nursing staff must be getting tired of seeing you (imagine a smiley face here - can't be bothered to fathom out technical challenges!!).

Sam X

[yorkshire_defector]

BonnieB
Re the PICC its pants that you found out after the PICC was done that your veins were too small. I went straight to the port on the advice of a lady in my chemo ward who has had both, and am sooooo glad I did.
I don't mind cannulation but playing hunt the collapsed vein was getting exhausting for me and the nurses and I now find that hand & arm are now still aching after last contrast I had with MRI at end Sept.

Obviously I am not you (you should consider yourself v lucky) but the operation was my first ever and was over in a flash, it was an hour max. It took c 2 wks to heal enough to not feel like one of the Borg and is sooo easy to get blood out and chemo in and doesn't hurt any more than the cannulation prick. Plus with a port there's no maintenance (a plus for me as am quite lazy and will do anything to avoid stuff I don't need to do) and your can go swimming too.
Also despite what I was told at the MRI unit (think its cos none of them are trained for port stuff so avoid it) the port can also be used for scan contrast stuff so there is no need for any more nasty cannula Hokey Cokey ever again.
There is an op to whip out the port and if you're yet to have surgery they do it at the same time.
Hope that's helped, you may however find, as I did, there's a waiting list (few weeks for me) so if you're interested I would pursue sooner rather than later.

Sam X

[katttz]

Hi all,

just checking in and it sounds like a few are going through the mill at the moment ☹️.

Berilperil: can’t believe you’ve been back in hospital. I hope those bloods are improving and you’re feeling an improvement at home. How frustrating, what are you being given to help your neutrophils? here’s hoping the rest of this journey improves xxxx

Naomi: sorry to hear you feel unwell too and are having a  delay.  I’m having docetaxil tomorrow. Consultant kept telling me not to worry about side effects and to not worry about what the nurses tell me. He thinks I’ll sail through....immediately had me thinking he’s trying to install a positive mental attitude as maybe docetaxil is a rough ride😬. We’ll see !

Louise: I’ve read dark nail polish can protect your nails. I’ve painted my toes navy blue and have shellac on my hands. However one of my big toes is sore and I can see black at the cuticle base. I’ve lost a few toe nails before through running and they grow back ok. I’d rather keep my fingernails though!

I had a consultant appt on Friday and my tumour has shrunk 25% but the cancer is still active so my pathway will not go with a 3rd EC but straight to pertuzumab and trastuzumab. I’ve had them both today and I’m back for docetaxil tomorrow afternoon. I’ll keep you updated on any side effects. Last week I totally felt like my normal self. Food tasted good, I had energy and even managed to run and I even had a night out with a few proseccos! 
let’s see what the next few weeks hold 🤞

Im booked in on a FeelGoodLookBetter day 5/11.  Hoping I feel well enough xx

Thinking if you all and sending positive vibes 😘

[berylperil]

Hi Naomi

I am on Carboplatin and Docetaxel for triple neg.  I too have struggled with neutropenic fevers,  and have in both round 2 and 3 required hospital admissions and been given  both IV and oral antibiotics each time. I have found the neutropenic infections pretty dispiriting to be entirely honest.

I am now thankfully home from hospital and hoping to enjoy a decent half term with my family.  Wishing all a good week. X

[Naomi40]

Was meant to have my 3rd cycle of fec today but my oncologist has said to delay it until next week as I have a cold and I’ve been given a weeks worth of antibiotics. My oncologist also said that I won’t be having Docetaxel after as they feel it will be too much for me and are now looking into a chemotherapy drug that I would have weekly instead. Also mentioned was a central line for treatment as my veins are playing up, but for now they will see how everything goes next week.

Has anyone else had Docetaxel and how were the side effects? Was anyone else offered an alternative? 

[bonnieb]

Well , I went to hav my picc line fitted on Wednesday to then have  my second fec treatment on Thursday to be told that my veins are to small for the picc . I cried , cannulation hurts so much , might now have to have a port fitted which I really am apprehensive about . Recovery at home after being very sick on Wednesday night early Thursday morning after  treatment . Also had an infected seroma which had to be drained last weekend and a full course of antibiotics, luckily enough they let me stay at home and not admitted to hospital . On a positive 1/3 of the way through my chemo  . 

[berylperil]

Hi 

Sorry to hear about your toenails Louise, are you on Docetaxel? Worth a quick call to specialist nurse?

No good news here either. I felt really quite bright on Wednesday after a rough 5 days post chemo. Short lived as now pinged back in hospital for a repeat of what happened in round 2.  Naff all neutrophils and a temp. Breathlessness and dry cough have also shown up too.  I was hoping to avoid drama with a reduced dose this time. Think I am proving to be a bit of a rubbish chemo patient. 

[louisep]

Hi

My toenails have started to go black. They are very tender. I have read chemo causes this. Any suggestions please how to stop this. Many thanks

Louise

[Naomi40]

Hi Everyone I hope you are all doing okay (as well as anyone can really)

The antibiotics finally did their job but I felt so rough for a few days.

 I managed to get out and about and take a few trips to the cinema with kids and partner and a little visit to McDonald’s on one occasion.

Chemotherapy on the 21st and I have had a sore throat and ear ache on and off for a few days. No temperature though and apart from feeling a lot more tired then normal I feel okay.

Sending hugs to everyone xx 

[yorkshire_defector]

Berylperil
Hi, had another enjoyable chemo experience this week (no reduced portions for me I'm afraid) and am feeling fine afterwards, just the usual tiredness, a bit of lack of appetite and having to set a million alarms to ensure I don't miss any medications!
Lucky you packing up the lap top - I'm still carrying on, and able to do c50% and am glad as need to pay the bills and all this cancer stuff you need - invested in some scalp balm as was getting a bit itchy and scalp was jealous as it is now on show and the rest of the body gets a good lathering of gunk each morning & it wasn't.

Great you've signed up for some stuff, let us know how you get on. I've found them odd, interesting and a good opportunity to meet others and share thoughts, views, fears etc.

Glad you got back the platelets back up so could have your treatments though those ingredients did not sound like they were going to make for a tasty meal but if it works then happy days.

Go for the coat & boots, last you far longer. Apparently my sister has acquired a turquoise wig fresh from a drag queen in Taiwan (she lives out there) which is winging (or should that be wigging...boom, boom) its way here, should be fun...! And I will wear it on the odd occasion just for even more stares.

All
Interesting topic on cinema, got a day with a girlfriend Sunday and I'd love to go for an autumnal walk somewhere but the weather is looking a little pants (and she is a soft southerner) so may also go for the cinema, have "narrowed" it down to Judy, Joker (yes not letting the darker films put me off) or Gemini...am a bit concerned that I will fall asleep though and waste the vast entry fee that it is nowadays (such a tight northener).

Went for my flu jab earlier and enquired as to whether I would need a pneumonia one - its being looked into, chemo doc recommended flu and pneumonia is good if its one with dead cells (no idea what that means but that's the one to have).

Have a good weekend with minimal side effects

Sam X

[katttz]

Berilperil, yay to platelet count! Keep eating what you’re eating, it’s doing it’s job. Hope all going well so far x
 
I like the sound of Sandra , you need to let her out the house. My mother in law is Sandra.... she sounds similar 😂

My wig is Wendy. Wendy doesn’t like the wind and needs restraining at times. My 10 year likes to wear Wendy and styles it with clips, bobbles and hats 😂.

I think I might get another wig.... decisions decisions 🤔

Hope everyone feeling good, great, ok, fab, brill. 😘

[berylperil]

Hi

My excessive food consumption has paid off! Platelets made it over the line for treatment. Have had dose reduction for both Docetaxel and the Carbo so hoping to avoid neutropenic sepsis drama this round. 

Kattz, my NHS wig (not yet seen in public), has been named 'Sandra' she is very blonde and bouffant (not like the website picture), Sandra is channelling 1986, she needs shoulder pads and blue eyeshadow to really rock it! 

Bizarrely I have had some hair growth in the latter part of the cycle, I am fluffy grey chick. It stands on end but is soft. Not a great look, but today's outing to get pickled and poisoned will no doubt sort it.

A friend wrote me a letter, she is on the chemo journey and on the subject of hair loss woe reminded me of a line in series 2 of Fleabag (recommended binge watch), where the line is given at full tilt after a salon disaster 'hair is everything' . I am sure many of us facing the cruel twist in the game of this side effect will concur and relate with Fleabag's sentiment. 

Anyway, over and out, let's see what delights the next 72 hours will bring. All the best to those on the treatment gig.

[katttz]

Hi Naomi,

worth trying some ice to numb the area. Other sites can be your thigh but check with your unit first. 
If it becomes unbearable there are numbing creams .... not sure if they would give you them but worth a try. 

Beril Peril:

Downton has passed me by , maybe I should start the box set from scratch. I do love a period drama and I have time on my hands 🤔

I have a few freebie cinema tickets so I’m totally going for a few solo visits during the day , it’ll have to be the deluxe recliner cinemas though! 

I’ve felt bushed again today, had a heart scan this morning and have pretty much been good for nothing all day! 

Booked in for a wig trim next week at my hospital. I bought the wig from a private salon, paid a fortune and I can’t stand it! I honestly look like a bloody American big haired politician. Picking the kids up today, I actually thought it was going to blow off in the wind... can you imagine 😂😳

I have also discovered I have a small head!

Nightnight all, will check in soon 😘😘

[mini mad]

I used to put an ice pack on the area i wanted to do my injection 👍

worth a try xx

[berylperil]

Hi Kattz, 

I too went to the cinema, but in the afternoon. Felt quite naughty to do this on a Monday when normally would be working. Gentle afternoon for me watching Downton abbey in my case, I dropped the age demographic in the cinema by about 20 years!! 

[berylperil]

Hi 

I too popped into the local  C support centre, and had a lovely reception (with tea and biscuits). Haven't been ready for this until now. Have put laptop away so work now on hold until after christmas. Booked a 'Look Good' session for next month, and going to sign up to the relaxation therapies on offer and join the ladies support group. This group does talks and is a social gathering so sounds good.

Today's activity involves cooking and eating! Yesterdays pre treatment blood check has found my platelets too low. Re -check tomorrow. I don't want a weeks delay, so crossing everything, roast beef, broccoli, nuts and chocolate are on the menu.

Naomi, don't think I have a lack of stomach fat in my concerns list. Plenty to aim for when I inject!  Might be worth a chat with the chemo nurse about alternative sites to inject in your case.   Hope you feel better soon.  Antibiotics should be kicking in and hoping you turn the corner soon. 

Will, update if I get my treatment to tomorrow. Sam, chemo twin, are you good to go tomorrow for treatment?

Ps still, no new wig purchase here, getting to the point of should I bother at this half way stage?! Maybe a new coat and boots instead!  

Take care all. 

[Naomi40]

Hi Kattz 

I haven’t been feeling that great today and I’m hoping the antibiotics start to make a difference tomorrow x 

Has anyone else been struggling with their injections? Normally they don’t hurt but it seems the places I normally do my injections in my stomach has started to lose some of it’s fat and now they hurt . 

Any tips would be greatly appreciated 

[katttz]

Hi everyone! 

Naomi, how are you today? Hope things are improving . 

Thanks for the info Sam, I think I’m ready to start booking in for a few sessions. I’m  in Leeds so it’s a huge hospital probably with lots on offer so I’ll start enquiring.

They are waiting for the Maggie Centre to open( anytime now as it was delayed)and they’re meant to be very good. Time to get myself out and about!

 I went to the pictures last night to watch Judy. Anyone seen it? It didn’t start until 20:50. I was convinced I’d be snoring before 10 but I got to the end 🙌

Not a very cheery film, in fact downright depressing but watchable all the same.

Don’t think I’ll view The Wizard of Oz in the same light again 😞

The sun is shining in Yorkshire , I hope it is everywhere else too 😘🤞

[Naomi40]

Shi,

Thank you. I also got the pharmacist to take a photocopy of the prescription and I have put that in my chemotherapy record book xx

[Shi]

Naomi please ring your unit and let them know what your doctor has prescribed you for the uti. Keep them informed on everything please so if you do end up in there they have your records up to date so will know what to give you if it happens. Please keep safe. 💕💕✨✨Shi xx

[Naomi40]

Shi 

Thankfully the receptionist chased it up and now I have a prescription for antibiotics. Too many different doctors taking over from my normal gp and notes not properly read etc. 

[yorkshire_defector]

Hi Katz
You asked about other charities & their services.

I also find the MacMillan monthly chemo thread useful for support & sharing stuff with, as with here there's lots of supportive & knowledgable ladies (and some gents) going though directly & indirectly what we are.

Other things am doing/have planned
- look good feel better workshops - through the same charity
- via MacMillan a couple of courses ("relaxation & visualisation" and "facing your world"), they do other ones also.
- via MacMillan 4 lots of massage/reflexology/reiki
- via MacMillan talk on diet from a dietician

Am lucky that macmillan have a office/showroom in the cancer clinic I visit.

Sam X

[Shi]

Naomi please ring your rapid response and speak to someone, I had a uti on 1st chemo, no temp so thought it was as nothing but rang my unit and I was on antibiotics drip for 6 days, please keep safe and speak to someone ASAP. 💕💕✨✨Shi xx

[Naomi40]

Kattz 

slight mix up and the nurse wrote down that my urine sample was abnormal and ++protein but didn’t write it down for the doctor and now I have to call back again later. I have left a text message for my chemotherapy nurse as I really don’t want to have to go down the hospital and I really hope that the doctor can write me a prescription today. I have moments where I’m too warm and then too cold but because I’ve always been like that I struggle to know if that’s normal. I don’t have a temperature so I’m guessing it’s normal. 

[katttz]

Hi Naomi ,

hope the antibiotics kick in fast. A uti isn’t nice. It might be worth ringing your unit to let them know your gp has prescribed antibiotics , they should be able to reassure you . xxx 

[Shi]

Glad you are getting it sorted with antibiotics. During chemo I was on the phone to the unit about anything, rather get everything checked so it’s ok so they can do their job of getting you through safely. It’s a rollercoaster you just keep hold and ride out the ups and downs, use the someone like me facility on here or speak to your Macmillan unit, there are things you can go on that could help you manage the ups and downs also the ask the nurse on here too they have more knowledge on how to help you. 💕💕✨✨Shi xx

[Naomi40]

Shi, 

My gp is going to do me a prescription for antibiotics x I still feel so clueless as to what to look out for but because of previous kidney problems and urine infections I notice the symptoms pretty quickly. I’m having a day where I feel so fed up and emotional 

[Shi]

Naomi phone your unit, the uti will need antibiotics quickly, please keep safe 💕💕✨✨Shi xx

[katttz]

Hi! Apologies once again for being rubbish at keeping up to date with everything. Think I was in hospital last time I posted! Well I’ve had my 2nd EC last Monday , doing ok so far. Bit of thrush on the horizon 🙄😩 but nothing else to complain about ( apart from my husband!)

Have read and updated myself and will be keeping in touch more often!!

Can I ask what charities/services you are accessing and what for? 
Think I’m at the point of wanting to reach out a bit now rather than feel I’ve got everything under control. Xxx 

[Mermaid1971]

Hiya Hazel. I too am on 6 rounds of FEC-T . BC stage 3 with lymph nodes affected. My hair has been past my butt since I was 13 so it was a big shock when it started falling out ( after cold cap!). I decided to take the plunge and have a mobile hairdresser come to the house so it didnt feel so exposed. She plaited my hair into separate plaits and we put the plaits into a bag to send to the princess trust to make wigs for kids with cancer. It helped somehow knowing cutting it off wasnt in vain. I'm left with a grade 2 but slowly turning into an egg as it rubs off on my pillow lol!!. On the upside my lovely, it's one less thing to worry about. Hair washing takes seconds and not having loads helps with the tropical moments caused by the medication!. Onwards and upwards my darling, we can do this!! Xxx

[AnnaGabanna]

Good morning everyone! Had a busy end of the week. I attended the Young Women Together Event up in London and I have to say it was brilliant. Learnt so much from the speakers and met really lovely people. But I think the paclitaxel is catching up on me as woke up this morning with sore throat 😩 No temperature tho. I will have to chase up that difflam that I have asked for last week. I have a blood test this morning as it will be my carbo/paclitaxel dose this week. Hopefully LFTs should be ok. Have a great day people ❤️

[Naomi40]

Good morning everyone, I hope everyone has had a great weekend x 

For me unfortunately after rushing to and from the bathroom most of the weekend it seems I have a urine infection!! I guess it’s just one of many things I’m going to have to deal with ☹️

[Shi]

wait still you finish chemo you all have faces like chick hair, it’s like a little fluffy downy hair, you just have to go with it, it does go normal it’s just you’ll look a bit Chicky for a couple of weeks 😁 💕💕✨✨Shi xx

[yorkshire_defector]

Ha, why is it that since the website seems to have changed re look that my "photo" now has a beard?  Strange as my chin hairs have stopped growing...can't change it either...

[yorkshire_defector]

Naomi

Just to add to the PICC line debate, I actually chose to have a PORT fitted as spoke to a lady in the chemo unit who had had both and I was sold on the PORT as comes with no pesky maintenance (dead lazy me).  It does need an operation to install but that takes max 1hr so you're a morning in hospital.  Plus as port is positioned on chest not as obvious as PICC plus you can swim in it (not me as can't bl00dy float!).

There may however be a waiting list or delay, I signed up and got the op about 4-5 weeks later.  They will take mine out at the same time as mastectomy.

Sam X

[AnnaGabanna]

@pinkflamingo I was actually looking forward to not having a period as I suffer from dysmenorrhea and abdo pain postmenses 😭 Saw my onco today and told her about my periods, she said to update her on my next chemo how I get on but she also said some women have multiple periods during chemo then premenopausal. As long as our FBC is fine especially the Hb ct it’s ok. I did ask whether I could supplement it with ferrous sulfate as suggested by one of the chemo nurses this morning (I had chemo AM, Onco PM), she said it causes constipation and black stool so not advisable. 

But if you are passing numerous  clots via heavy period make sure you mention it to them as they will need to refer you to gynae (still sccdg to Onco).

[pinkflamingo]

Not just me then!! Having been told that the chemo would stop my periods I was a little disappointed to get them two weeks apart 😫. I’m 54 and peri menopausal prior to chemo. 2nd FEC today 🎊   Still, on the bright side I’ve managed to shed 4lbs in the same 2 weeks (I can afford to, don’t worry 😉) despite my appetite remaining good!  

[AnnaGabanna]

Hi @Jencat I’m 40 so far I had 2 periods this month😓 Chemo this morning then onco afternoon. I will ask her tho x

[Jencat]

Hi AnnaGabanna, I don't know how old you are, but I think if you are post menopausal then you can have Zoldronic Acid. I had it alongside chemo and on it's own since I've finished chemo. It is a bone strengthener and my onc said it helps to prevent bc going into the bones and with a recurrence.

I hope your next session of chemo goes well x

[Jencat]

Naomi40, just wanted to reassure you about the PICC line, I couldn't feel it being done and had no problems with it. The downside could be that you have it flushed every 7-10 days, but I didn't mind that, I found it quite reassuring to go back to the unit in between chemo's x

[mini mad]

Hi Naomi40,

think its me you wanted to message re picc line.... i know what you mean re ' chemo fog/head ' 😆😆

the picc line is inserted into a good vein which they find via a scan.  It goes along the vein  under arm pit and ends up above the heart.  Sounds a bit daunting and believe me i was sooo worried,  but its not to bad.

i found the local anaesthetic jabs were more painful than the procedure itself.  But they dont take long then its numb...

with a picc  you have your chemo drugs and blood taken thru this, and also any meds you may need.  No more cannulas 👍👍

picc line just needs flushing through and dressing changed once a week,  its so easy.

hope this helps you decide.. mini mad xx 💖💖

[Naomi40]

I probably didn’t even reply to the right person then. I find with my 2nd chemotherapy under way I feel so much more disoriented and forgetful 

[Naomi40]

Hi Bonnieb 

Thank you for replying. 

How do they insert a picc line, was it painful at all and how do you manage with it?

Naomi