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June 2019 chemo starters

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

Member

Re: June 2019 chemo starters

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

Member

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 

Member

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

Member

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! 

Member

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.

 

 

Member

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

Member

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

Member

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 :-) 

Member

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

 

Member

Re: June 2019 chemo starters

deffo close enough!!!
Member

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. 

Member

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

Member

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.

 

 

Member

Re: June 2019 chemo starters

Hi

Just popped in from the February group and seen your post regarding false eyelashes. The ones we were talking about are Eylure C which are currently only available in Boots, in store or on line. They were mentioned during my Look Good Feel Better session a few weeks ago. We would all highly recommend the make up session so sign up as soon as possible.

Pop into our group anytime if you have any questions, worries or just for a chat. I'm sorry you find yourselves here but you can and you will get through this. xxxxx

Member

Re: June 2019 chemo starters

Ruby Thursday, you made me laugh with your extreme diet comment. 

Fourth cancer, wow, has it been worse to deal with each time? 

So you were 37 for you first diagnosis, same as me now.

Have you been tested for that gene? 

Welcome to the June chemo team, so sorry you find yourself here again. X

Member

Re: June 2019 chemo starters

Hello Ladies,

I am starting chemo (again) in a couple of weeks so hope to join in on this thread :-) I was originally diagnosed 2008 with recurrences in 2011, 2012 and a month or so back. Latest tumor is triple neg so I will be having carboplatin with weekly Paclitaxel for six months.

 

i did FEC T back in 2011 and have also had letrozole, tamoxifen, goselerin, arimidex, mastectomy, Free tram flap reconstruction, full axilla clearance and I have also had my ovaries removed. Basically I am extreme dieting by losing non essential body parts :-) I am currently 49. All my recurrences have been local so far. 

 

Ruby.x

Member

Re: June 2019 chemo starters

Just bought some ice pop makers from Sainsburys, so list is again shorter. 

I've hardly any eyebrows so already pencil each day, so wonder how different it will be for me, as I'm not blessed with thick brows, I literally hardly pluck as it's only ever the odd one that is out of line. 

I will miss lashes though, seen on a fb group that there are lashes available to buy specially for hair loss, but not sure where these are bought from. 

I'll look out for the course, I'm guessing this will be offered from the chemo ward? 

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

hi,

Yes the crash is like feeling very down, some people get it worse than others of course, I felt teary and quite snappy. 

As for the menopause, chemo sent me into mine, I got one period during the first cycle and have none since.  I am now on Tamoxifen too which definitely causes the menopause I think, although some continue with periods.. again it seems to vary.

Glad to be of help, if I think of anything else I'll let you know.  Ooh if you get the chance to book on the Looking Good Feeling Better course get it booked now.. its a fab day where they show you how to do your makeup (drawing in eyebrows when they go is a real art) and you get given a lovely bag of cosmetics but I know the courses get filled up quickly..

Thinking of eyebrows...they didn't seem to go until about cycle 4/5 (along with the eyelashes) but surprising how quickly they came back too.

Kip

xx

 

Member

Re: June 2019 chemo starters

Any tips help! 

I've a to buy list and I'm almost at the end, been an expensive time getting prepared! 

Is it in the chemo we go through induced memapause or when we have hormonal injections and tamoxifen.? 

I've got my menopausal supplies in already anyway. 

Just to get boiled sweets now and ice pop maker and I'm sorted. 

Member

Re: June 2019 chemo starters

Hi, I hear steroids and think weight gain, last thing I want. 

But if its only a day on them I suspect there should not be a weight gain issue then. 

 

So crash, be like just feeling down? 

 

Thanks for heads up 

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

Me again..one more thing.. Steroids.. you get given these with your medication.. be warned.. lots of us suffered the blues when we stopped the steroids (usually after a day or so) this is well documented and called the steroid crash.. only lasted a day or so for me but just in case you wonder whats happening.. its all normal.. some cycles were worse than others but its ok to shout, cry and stamp...you are having chemo so you are allowed!!!

Kip

xx

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

Hi June ladies, so good to see you are already forming a group and helping each other out.  I am from the June 2018 group.  I had surgery first (Grade 2 IDS), so single mastectomy no recon and then 3 x FEC and 3 X T chemo, followed by node clearance surgery and then 15 x rads.   The total fear of chemo is pretty much what everyone feels...but once you get going you feel more in control and can find ways to cope with any side effects you get.  A couple of tips which helped me were:

  • Make sure you drink lots of water, especially the day before chemo, day of and day after.. helps to keep the veins plump and hydrated and to flush it though.  If you are having FEC.. one of the drugs (the red one) makes you wee red for a couple of days.. so don't panic.
  • If you feel nauseous and your medication doesn't work - don't hesitate to call the chemo line as they have other drugs that may help you.. one drug may not suit everyone.
  • Eat what you can when you can.. sometimes your taste buds go wandering and I found tonic water tasted ok, lime cordial and pineapple juice too.
  • Anything ginger helped, dry crackers and sucking on boiled sweets too.
  • Fresh pineapple is good for cutting through a furry mouth.
  • Take all the medication they give you.. don't be scared its there to help. 
  • Call the helpline if at all worried...they are there to help you.
  • take your temperature every day and if its up.. call the line!
  • Hair - a big question.. I didn't cold cap and mine started to shed by about day 12 of the first chemo...its very sore and tingly when its starting to go.  It was a hard day for me when I had it shaved off but eventually you get used to it and once its gone you stop fretting about it going.   As a plus it started growing by the last round of chemo and 8 months later it is thick and bushy (albeit grey and curly!).  I got a wig before I lost my hair, my hospital gave me a voucher for it, but I also used hats and scarves too.  Wigs can be a bit warm.
  • Take it easy, you may feel tired somedays so rest whenever you feel you have to..I found I could still manage a walk everyday, sometimes only a little one but it all helped.   And there were plenty of days in the cycle when I felt up to going out and doing stuff, just avoid crowds during the low white cells week (usually the second week).
  • Soft toothbrush - use a baby brush as your gums can get sore.
  • Mouth wash - Difflam mouthwash is good when your mouth tastes yucky too.
  • MOST IMPORTANTLY OF ALL... keep on chatting on here.. you'll all discover tips and advice as you go along...

I hope some of these help...

Kip

xx

 

Member

Re: June 2019 chemo starters

Yes Chicken81, lets see if we can do it! I have bought  2 wigs already.just in case and I have bought a huge flask to keep me warm!!

Member

Re: June 2019 chemo starters

Ten min is the goal then, I'm June 6th so just a few days after you.

Got to get my wig next week, just incase I need it. 

Member

Re: June 2019 chemo starters

Hi! I have non hormone responsive (triple negative) grade 3 about 45mm tumour so chemo for me first  too. Round one due on 3 June and going to try the cold cap.

 

Apparently if you can bear to have it on, after 10 mins it goes jumb so hoping I can persevere x

Member

Re: June 2019 chemo starters

Hi there, I  triple negative too, PICC line next week and first of x12 weekly paclitaxel/carbo on 3 June after chemo will be surgery x

Member

Re: June 2019 chemo starters

Hi Lisa, I'm June 6th, so I'm one day behind.

I think my chemo is x4EC and x4 TCP I think are the initials.

 

Member

Re: June 2019 chemo starters

Hi,

I’m Lisa. I have Triple Negative Breast cancer stage 3. I had a mastectomy end of March and I’m starting my FEC-T REGIME for 18 weeks on the 5th June. I’ll have my PICC line fitted on the 3rd. 

I got all my dates today and although I was expecting it all it’s been a shock that it’s all so real. 

Member

Re: June 2019 chemo starters

Hi, 

 

I had my first round of Fec-t on Monday and used the cold cap. Won't know if its been successful yet but I was OK with it after about the first 10mins or so. I've had little side effects so far apart from some red flushing on my face and torso but that could be from the steroids. I too was recomended chemo first to shrink my tumour but I had already decided on a masectomy so wasn't really relivent for me. I think it can be reassuring to have the chemo first as you have evidence that the chemo is working plus they can easily swith the drugs etc to get a better response. My anxiety now is I won't really know if there is any rogue cells anywhere and if there are I won't know for sure if the chemo zapped them.

Mangomun

Member

Re: June 2019 chemo starters

Good luck . I had surgery first just to say it's nearly eight weeks since I started chemo and I still have most of my hair ... stick with the cold cap . Take the sickness meds rest plenty drink lots of water it won't be as bad as you probably think it will x 

Member

June 2019 chemo starters

Hello, I'm starting a June group as I'm starting first week in June. 

I've to have chemo first before surgery then radiotheropy, hormone injections and then hormone tablets. 

 

Chemo first was a shock as I assumed I'd have surgery first like most people seem to. 

But I've a 35mm lump that needs reducing and I'm grade three so cancer needs stopped.

 

I'm having a cold cap 🧢 

Anyone else?