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June 2019 chemo starters

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Re: June 2019 chemo starters

Hi Ruby,

glad you are feeling better now you are back home 💖 take things easy.

tonight i had some nausea kick in so have just taken Domperidone.  Hoping this helps me some.

also i think im like you....the back end plumbing isnt working properly...  not passed anything today but yesterday i managed ( sorry everyone ) 3 hard marbles...  im eating loads of fruit, wholemeal bread,  weetabix and plenty of water.    What is Movical ???  Over the counter or from hospital ?

thx  💖

Member

Re: June 2019 chemo starters

Hello everyone, hope you are all as well as can be expected, I am recovering much better in my own surroundings as predicted although still pretty off my face from my own personal pharmacy....however it is now day seven without a 💩😳 think the codeine and morphine have broken my plumbing! Chugging Movical and pretending it’s 🍷...

 

good luck for Thursday Zed, I found FEC doable personally, my top tip if you feel sicky or acidy is to remember that they often start you off with the cheap anti sickness 😉 don’t be afraid to ask for something different if it’s not doing the trick for you xx

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Re: June 2019 chemo starters

Hi everyone. Hope you all feeling a bit better. Just been for my new patient appointment with nurse & been given my first chemo appointment this Thursday (FEC). Will try the cap. Scary stuff

Member

Re: June 2019 chemo starters

At least they have let you out..... no matter how bad things are they just feel a little easier when you are in your own home.   

You sure are having a crap time arent you...  we just dont know what this awful stuff is doing to our bodies and how we react...

lots of rest inbetween loo trips,  water to flush everything nasty and be kind to yourself..  things will get better you just gotta go with it... sorry going on too much.

tc    Jan xx 

Member

Re: June 2019 chemo starters

Hi Chicken81,

sorry to hear you've felt grotty after your first session.  Just have to go with what your body tells you.

i'm not doing the cold cap as when i mentioned to my surgeon i have headaches she said the cap could make them worse.   

So i now have my ' wiggie '  and have ordered some cotton head scarves in different designs and a couple of sleep caps ,  so you could say i'm ready.... not really but no choice......

hope things improve for you.  I have my second session next friday....

good luck .... Jan xx 💖

Member

Re: June 2019 chemo starters

I have escaped the hospital! They agreed I could just as easily have the headache from hell and 🤮 in my own home so have let me home with a carrier bag of antibiotics for the uti I picked up, codeine, anti sickness and oromorph. Nice to be home but still feel like 💩 to be honest! Can’t stand up for more than a few seconds...am considering slithering to bathroom on my belly!

 

tomorrow is another day for all of us, let’s hope it’s a better one 😊 XX 

Member

Re: June 2019 chemo starters

Hello everyone, 

Had my first chemo, EC, Thursday.

Friday was OK for me, but Saturday, it was like I lost the day, just totally knackered beyond belief. Today I feel a little better, but I'm guessing I'll be resting up most of the day. 

I did use the cold cap. The first 30min before chemo was OK.

Then had to have 90min after chemo. The last 30min where horrible. I felt sick, was teary, just wasn't comfortable at all.

I'll give it one more go, but those last min were not nice at all. 

I'm still just lethergic is all I can say. Feel very weird not being able to just crack on with things. 

I've signed up to the race for Life for July 14th. Got 20 on the team so far.

Hopefully get into some sort of regime of training soon enough. The race is a few days before cycle three, so should be OK for it. 

Hoping everyone is OK. 

My head is a little hazy, not sure how else to describe it. 

Speak soon

X

Member

Re: June 2019 chemo starters

Well started on the tummy jabs,  took out of fridge half an hour before.  John did mine and didnt feel a thing.. yay........ no problem!   Good luck with yours xxxx 💖

Member

Re: June 2019 chemo starters

Hey Ruby,

thanks for your update... hang in there girlie 💖

took my jab out of fridge 1/2 hr before,  john did it for me n didnt feel a thing...yay...

stay in touch yeah ??  💖💖

 

Member

Re: June 2019 chemo starters

Hiya, I am still in but pain improving although now have a uti! Too many hospital carbs!

 

the thought of the injections is far worse than the doing, yes you pinch some flesh and put needle in at angle. It is self retracting. See how you go but I found it helpful to a) take out of fridge half an hour before and b) have some paracetamol handy (check your temp first) in case of fluey like symptoms 

 

Ruby x

Member

Re: June 2019 chemo starters

I have to have 5 days of injections too, it’s to prompt the bone marrow into producing more white cells ( I think that’s what they said) my hubby is going to try to do mine god help me 🤔

Member

Re: June 2019 chemo starters

Sorry to read you are having bad symptoms... maybe your are out of hospital now ..

i will be starting the Fili....something tummy injections tomorrow.   Was never told i would

be having these so bit of a shock.  My husband is going to do them for me.

once you've pinched the skin do you put the needle in at an angle ?  Was told this made it less painful or just straight in....

do hope things are beginning to improve for you..big hugs. 💖

Member

Re: June 2019 chemo starters

Welcome samarshall66 😊 

Chicken hope it went ok and cold cap not too bad?

i am still an inmate at my local hospital, came in for a head ct on Wednesday been here ever since. Severe headaches probably weird side effect of chemo or Filgrastim injections. Now got uti and sickness so looks like I will be here for a couple more days. Keep smiling ladies Ruby x

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Re: June 2019 chemo starters

Thank you for this great information. A bit daunted by the journey I’m about to embark on. Start on 18th. 

Member

Re: June 2019 chemo starters

Hope your are OK now Ruby. 

I've been for my 9am chemo and been sent home til 12.30 as they've double booked the cold cap, so I'm going second.

My mam can step in to look after my little boy after school, the other lady had child care issues, so I'll be in today but I might have a different day next time. 

I'm told I may need a picc line, so let us know about that ladies 

I'll update you later in the week for my first chemo 

Chicken x 

Member

Re: June 2019 chemo starters

Good luck for today Chicken81. Felicidad, I am having my picc fitted on Tuesday have been told I can drive home so hopefully shouldn’t be too sore.

 

i have spent last 24 hours in hospital due to severe headaches, head ct scan looks ok awaiting results of lumbar puncture then if ok hopefully home today ready for next chemo tomorrow. Am in isolation room as not sure if I have infection or not. Ruby x

Member

Re: June 2019 chemo starters

Chicken81 : it was called a Glomerular Filtration Rate test,or GFR, where they injected me with a small amount big radioactive tracer, and asked me to return 3 hours later to have a blood test. 

 

I just got the appointment for the PICC line on the 18th, early afternoon.I hope I don't feel too sore because I have tickets for a show in the evening! 😐

 

All the best for Thursday ❤️ 

Member

Re: June 2019 chemo starters

Felicidad, how will they check your kidneys? 

I know I had a blood test sent off and I never heard back and that's it. I think that kidney check was more for my MRI, so just interested to here. 

 

I'm all ready to start Thursday for my first EC, got measured for sizing of my cold cap at assessment Monday, so it's nearly time to start :/

Member

Re: June 2019 chemo starters

Hi Minimad -Good luck for this Friday! I am also TNBC but I will be on EC first and then Paclitaxel and Carboplatin (6 months in total).I am still through some testing (tomorrow they test my kidneys function!) and expected to start around 20th June(ish)

 

Rubythursday - glad to see you are not having too bad side effects so far! Smiley Happy

 

 

Member

Re: June 2019 chemo starters

Hi Minimad,

 

same regime as you, started last Friday. Fatigue bad, headache has been worst so far but more likely a reaction to the Filgrastrim injections. Have been prescribed codeine for the pain. Bit of light hair shedding but otherwise not too bad all in all!

 

good luck for Friday, remember everyone is different xx

Member

Re: June 2019 chemo starters

Hope you dont mind me jumping into the June chemotherapy thread..

starting my treatment for TNBC this Friday 7th June.

one day a week for 12 weeks of Paclitaxel.

one day a week , every 3 weeks for 4 cycles of Carboplatin.

anyone on here who can give me any idea what side effects are the most common ?

i know there will be hair loss 👩‍🦲👩‍🦲!!!

thankyou ladies. X💖

Community Champion

Re: June 2019 chemo starters

Hi rubythursday

 

I just love the photo showing your lovely pink cheeks - I remember them well when I was on all the steriods before chemo - that was 2 years ago now and it's funny how a photo like yours has brought it all back to me!!

 

Good luck with your continuing treatments x

Member

Re: June 2019 chemo starters

Hello ladies,

 

Well Arnold and The Trespasser and going to get obliterated soon so that’s a good thing! I didn’t name my tumour, I have had so many tbh I would just about have run out of names by now! I just call my cancer the bitch. We go to war every few years and I kick her butt!

 

Gig was great last night, been dog walking and gardening this morning, steroids are great uppers that’s for sure! Shame about the bright red face! No sickness yet, just a few sicky burps, first filgrastrim injection today - no issues but stocked up on paracetamol in case I get the lower back pain I got last time!

 

i was never a scout and got kicked out of the brownies for not doing what I was told but I think I am prepared for most eventualities!

33C6BFF4-3F52-4A43-B6E0-69E44CA57765.jpeg

 

Member

Re: June 2019 chemo starters

Hi,

I've named my lump Arnold.

After Arnold Swarchenegger.

From him in kindergarden cop, 'its not a tumor, no one's going to die'

 

My hairdresser suggested it so we call it a name rather than cancer all the time, less scary for my little boy. 

Arnold's gonna get drugged next week! 

Anrold had a metal chip inserted. 

Arnold needs to be scanned. 

Actually works really well. 

We'll be saying good bye to Arnold... 

Member

Re: June 2019 chemo starters

Hi Felicidad I used the fragrance free Faith in Nature stuff as well as Simple.  Changed them about a bit.

Member

Re: June 2019 chemo starters

Rubythursday - Well done for Chemo n1  and have a great time at the concert! And thanks for your offer to give me info, I will be asking a lot for sure Smiley Happy

 

daisydi so Faith shampoos and conditioners will be ok during chemo? That´s a relief because I usually use them so I don´t need to get a special one - there are plenty of things on my shopping list already.

 

Dsa1980 - fingers crossed this time it get really kicked off! All the best x

 

I am thinking on a name for my tumour. At the moment my favourite is TheTrespasser - since it is illegally living in my body without my permission Smiley Wink

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Re: June 2019 chemo starters

Ah thanks for info. Definitely going to try it. X

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Re: June 2019 chemo starters

Hello ladies,

 

chemo number 1 done and dusted, was there for eight hours in total. Off to Leicester now to see The Manic Street Preachers. Sick bag, thermometer and antisickness drugs packed just in case!

 

gotta love steroids but what goes up must come down!

 

have a lovely weekend!

Ruby x

Member

Re: June 2019 chemo starters

with you on the 'doing it again'

I had chemo in 2014 - i remember it wasn;t as bad as i'd predicted.

 

This time i am having Paclitaxol and Carbo weekly for 12 weeks - REALLY hoping it kicks it's butt this time!

 

x


@rubythursday wrote:

Thanks for the link Nikki/mai17. Some good stuff on there.

 

My mantra when previously having chemo in 2011 was “This too shall pass” and it did.

 

Ruby.x


 

Member

Re: June 2019 chemo starters

Hi, 

 

The thickness and length of your hair doesn't affect it working,  a know a lady who has just become an ambassador for Baxter who make the machines, i could put you in touch with her if that would help?

 

 

Member

Re: June 2019 chemo starters

Hi daisydi that is so helpful. My hair is really thick so sounds very similar. Another lady also told me to try it so I think I’ll take both your advice & give it a go but with a cut beforehand so I’m not dragging the tangles out like I do currently as that’s what makes me moult at the best of times! Thanks again 

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Re: June 2019 chemo starters

Hi there Zed51 Im from the Feb starters.  I have had 3FEC and 2T with one more to go.  I have cold capped every session. I still have all of my hair.  My hair is thick and I had it cut to shoulder length with some long layers before chemo.  I think whether it works mainly depends on the condition of your hair, i.e. has it had the life bleached out of it and also how the cold cap is put on.  It has to be really tight and pulled down so it touches the crown of your head. I also wash it with Simple shampoo or Faith in Nature and condition it and leave it to dry naturally.  No heat on it and very gentle combing.   I am so pleased I persevered with it.   Good luck x

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Re: June 2019 chemo starters

Am I correct in thinking the cold cap has more chance of working the less hair you have? Ie if I get it cut short (so also not so thick) beforehand it might work better but also not be so traumatic if it does fall out? I’m talking funky short hairstyle not number 1 yet! 

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Re: June 2019 chemo starters

Glad you have managed to keep some of your holiday felicidad - I am also doing six months in total, I did FEC T last time so if there is anything I can help with please ask. Chicken81 - how exciting, a new wig- hopefully the cold cap will work for you and it can end up like mine did after chemo scaring the crap out of unwitting visitors to my vegetable garden adorning my scarecrow!

 

Zed51 - I keep hoping it’s all a bad dream too, but as Mai17 says on we march :-) 

 

my first chemo is tomorrow, 8.30 for “the talk” and a whacking great load of steroids, then chemo then who knows..expecting to be there four to five hours, hoping my still knackered from last time veins on my one useable arm play nicely or it’s a central line for me apparently!

 

keep smiling ladies, this too shall pass.

 

Ruby x

ps still feeling a bit of a June fraud but I am here now so I guess I might stay!

Member

Re: June 2019 chemo starters

Hi ladies,

 

Came from my first oncology appointment today and told I am going on EC x 4 cycles and Paclitaxel and carboplatin for the other 4 cycles, 6 months in total. I am expecting to start around 20th June -I managed to keep some of my planned holiday for June so I feel better about it. Now it's time to go through the shopping list! Both nurse and doctor made me feel that it's all going to be well, that it won't be easy but that is worse in my mind so I will try to keep the positive vibes flowing for those days that I won't feel like even facing the world.

 

 

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Re: June 2019 chemo starters

Hi all 

just been for first oncology appointment today. Having 6 x FEC-T with the last 3 combined with herceptin & perjeta. These last two continue for a year!!! Targeted therapy drugs as hormone receptive cancer. I have another appointment with nurses next week then will start treatment sometime the following week. Scary. I still expected them to say it was a mistake when I told them my name in clinic today. Maybe not quite accepted it as much as I thought. Sounds like a long slog. Glad you are all out there somewhere too it’s comforting to know not alone (although wish none of us needed it) xx

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Re: June 2019 chemo starters

Got my wig today ladies. 

So if the cold cap doesn't work I'm prepared. 

Also I dye my hair and no hair dye for six months... I'll need a wig if I've still got hair. 

 

I'm really happy I've got one super close to my colour and style.

Community Champion

Re: June 2019 chemo starters

Ruby, many of us are too young for this but on we march anyhow!  From what I’ve observed of Carboplatin it’s a bit more harsh on the red blood cells.  We all react a bit different though.  X

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Re: June 2019 chemo starters

Nikki, 

i hope it zaps it too - and I hope I can help others, but also learn as Carboplatin will be new to me, tax is an old “friend” !

Ruby. X

 

ps even though I am a Nana to a nine year old I am still way too young at 49 to be matriarch :-) 

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Re: June 2019 chemo starters

 

Great story mai7 xxx

Member

Re: June 2019 chemo starters

Thanks for advice, I start mine in June, xxx

Community Champion

Re: June 2019 chemo starters

Ruby, indeed, i found little mantras helped to keep my mind on track. You’ll be a good matriarch for the June 2019 starters if you’ve done chemo already. 💪  Hope the chemo zaps it for good this time.    

 

Nikki. X

Member

Re: June 2019 chemo starters

Thanks for the link Nikki/mai17. Some good stuff on there.

 

My mantra when previously having chemo in 2011 was “This too shall pass” and it did.

 

Ruby.x

Community Champion

Re: June 2019 chemo starters

Hello June starters,  I had chemo in 2017 and was a May starter.  For anyone looking for suggestions for getting through chemo, here’s my story:  http://lifeafterlola.com/

Of course you may not get all of the SEs I had and some don’t kick in until further down the road but it’s good to have a few ideas to hand.  At least stay well hydrated, aiming for 2 litres of water per day.  

 

You can do this and if you trip over in the tunnel here’s my 🔦 to light the way.

 

Best wishes

Nikki. Xx

 

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Re: June 2019 chemo starters

deffo close enough!!!
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Re: June 2019 chemo starters

Hi Chicken81,

 

i was 38 at diagnosis, just a young pup like yourself!

i am BRCA negative.

not worse each time, just different and sometimes easier as clearer idea of what to expect I guess, although this chemo regime is new to me, well the carboplatin is - I had tax for three months last time, but this will apparently be a much smaller dose weekly!

i might be a fraud in this group,as I found out today I start on the 31st May, close enough I reckon!

Ruby x

Member

Re: June 2019 chemo starters

felicidad

I asked if my treatment could be after my 15th wedding anniversary party, been planning it for a Yr.

They said a week wait will not have any impact. 

My lump has not grown, asked when I had my clip put it. 

I'm at the end of testing, have a week off and then it's chemo. 

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Re: June 2019 chemo starters

Of course their advice and my health will be my priority. Good to know your Gremlin got shrunk ! Hopefully the op will get rid off the rest. All the best xxx

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Re: June 2019 chemo starters

Hi felicidad

I was diagnosed with HER2 positive/negative inconclusive so don't know yet if triple neg or not. Basically diagnosed 7/12/18 and didn't start chemo until 8/2/19, so you'll probably be ok for your holiday, just ensure you listen to the advice given by the medics. I'm currently awaiting surgery for a lumpectomy and some nodal clearance after chemo successfully shrunk my Gremlin. We had a short break just before chemo started and have just returned from a short break in France. Our main July holiday had to be cancelled. Good luck with everything. xxx      

Member

Re: June 2019 chemo starters

Hi

 

I  was diagnosed with triple negative yesterday and the idea is that  I start chemo in the next two-three weeks, for 6 months, then have surgery and radiation. I am on the testing phase, having MRI, cardio echo etc... and because of that the medical team won´t meet  until June 5th to discuss my treatment as a whole. I have some holiday planned from 13th to 24th so I guess I am going to try to see if I can start after I return -a treat before it all starts! Would that make a big difference?

 

And yes, I will go for the cold cap but probably get a wig and some hats just in case.