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June 2019 chemo starters

Member

Re: June 2019 chemo starters

Bless you sound like me. You could sail through or you could be tired it really varies. I cry at the hospital and when I get a hospital letter as it reminds us What’s going on and it becomes all fresh again. Good luck to you and I didn’t go for cold cap either xxx vicxxx 


@MrsVelo wrote:

Hi ladies, well after what seems like a long wait my chemo starts next Thurs 27th.  Paclitaxel weekly for twelve, Trastuzumab every three weeks for a year.  Had two ops earlier this year, HER2+.  Decided againgst cold cap, can't be ars**d, will probably need a scarf anyway so thought I (we) are going through enough why add more pain/discomfort.  I realise it's personal choice though, anyone choosing it is braver than me!  Had PICC line in yesterday, not tooooo bad, but every time .i go near the hospital it sets my emotions off and I struggle not to cry.  Am dreading chemo.  At home I just act normal.  The day after my first one I am due to go to the I.o.W for the day cycling!  No idea if that will happen as no idea how I am going to feel.  Does it wipe you out after just one session?  Oh flip, I am seriously dreading the next three or four months. 


 

Member

Re: June 2019 chemo starters

Hi ladies, well after what seems like a long wait my chemo starts next Thurs 27th.  Paclitaxel weekly for twelve, Trastuzumab every three weeks for a year.  Had two ops earlier this year, HER2+.  Decided againgst cold cap, can't be ars**d, will probably need a scarf anyway so thought I (we) are going through enough why add more pain/discomfort.  I realise it's personal choice though, anyone choosing it is braver than me!  Had PICC line in yesterday, not tooooo bad, but every time .i go near the hospital it sets my emotions off and I struggle not to cry.  Am dreading chemo.  At home I just act normal.  The day after my first one I am due to go to the I.o.W for the day cycling!  No idea if that will happen as no idea how I am going to feel.  Does it wipe you out after just one session?  Oh flip, I am seriously dreading the next three or four months. 

Member

Re: June 2019 chemo starters

Thats good to know thanks, if you fancy a day in Folkestone I’m doing the breast cancer tea party on 29th June xxx


@Jencat wrote:

Try not to worry about the picc line Avilajo. and mini mad, I had one put in when I had chemo and I didn't feel anything! 

I'm near Rochester Avilajo xx



 

Member

Re: June 2019 chemo starters

Try not to worry about the picc line Avilajo. and mini mad, I had one put in when I had chemo and I didn't feel anything! 

I'm near Rochester Avilajo xx

Member

Re: June 2019 chemo starters

Thank you 😘😘😘

 

 

 



@mini mad wrote:

Hi Alvilajo,

Sorry to read you're suffering somewhat and then to get that letter.  Not surprised you're worried but all i can say is " try not to worry "....   i know i know its easier said than done but we just have to stay positive and strong...  we're WOMEN WARRIORS..... somehow we take what life throws at us and just get on with it......   getting carried away here....🤷‍♀️🤦‍♀️

I have my picc fitted next thursday so i will want to know how you get on next wednesday 🤞🤞

good luck and big hugs to you all.. xx💖💖

 

 

 


 

Member

Re: June 2019 chemo starters

Hi Alvilajo,

Sorry to read you're suffering somewhat and then to get that letter.  Not surprised you're worried but all i can say is " try not to worry "....   i know i know its easier said than done but we just have to stay positive and strong...  we're WOMEN WARRIORS..... somehow we take what life throws at us and just get on with it......   getting carried away here....🤷‍♀️🤦‍♀️

I have my picc fitted next thursday so i will want to know how you get on next wednesday 🤞🤞

good luck and big hugs to you all.. xx💖💖

 

 

 

Member

Re: June 2019 chemo starters

Hi I thought it was good having two lol. I live in Folkestone xxx


@Jencat wrote:

Hi Avilajo, just wanted to say that I'm thinking of you re onc's letter. Although they're writing what has been discussed, it seems to look worse when it's written down. With regards to the nodes, I might be wrong, but I thought having 2 wasn't too bad. I had 3 and I remember the consultant saying that made me more borderline for having chemo. 

I think you might be in my neck of the woods as you mentioned Canterbury! x


 

Member

Re: June 2019 chemo starters

Chemo two weeks yesterday but see oncologist next Thursday and pick line next wed xxxx


@rubythursday wrote:

I don’t know tbh, worth checking out though - when is your next chemo?


 

Member

Re: June 2019 chemo starters

Hi Avilajo, just wanted to say that I'm thinking of you re onc's letter. Although they're writing what has been discussed, it seems to look worse when it's written down. With regards to the nodes, I might be wrong, but I thought having 2 wasn't too bad. I had 3 and I remember the consultant saying that made me more borderline for having chemo. 

I think you might be in my neck of the woods as you mentioned Canterbury! x

Member

Re: June 2019 chemo starters

I don’t know tbh, worth checking out though - when is your next chemo?

Member

Re: June 2019 chemo starters

Could anemia kick in in just a week. Hope you had lovely meal xxx

Member

Re: June 2019 chemo starters

I am 49 as well, I have been most definitely post menopausal for the past six years. It’s not so bad, just different.

 

if you are knackered and breathless you might just have a touch of anemia maybe? I am also tired, but functional mostly, had lunch with my youngest today - it is his 20th birthday today, he was 9 when I was diagnosed first time round! I have more chemo tomorrow, then planning (if I don’t react like last time) to jump on a train to London to go see Bon Jovi at Wembley then spend the weekend in London..well I will be high as a kite on steroids so might as well make the most of it!

 

xx

Member

Re: June 2019 chemo starters

Aw ruby bless, sorry I do feel  lucky catching it early but one day they say two nodes is good and the u read that. I didn’t want to know my scoring as I would just worry so just accepted that they know best. It’s scary s**t this stuff. I’m 49 and yeh pre menopausal. I went to Canterbury today with hubby for a bit of retail  therapy but was exhausted. It feels like I’m on a mountain high up in Peru where energy’s affected, that’s the only way I can describe it. How are you feeling hun xxxx

Member

Re: June 2019 chemo starters

Hey Alvilajo,

 

i know its it’s hard but try not to be upset, the AI’s are generally considered to be more effective at keeping breast cancer away, I had a recurrence within two years on tamoxifen and went more than seven with Letrozole, and I was unlucky - many, many women never have it come back at all!

 

i guess from how young you look in your picture you are premenopausal? Zoladex is ok, as is Letrozole. I have done both and I have had my ovaries removed too to stop the oestrogen, please ask if there is anything you want to know.

 

This whole hellish experience is an emotional rollercoaster and we all wobble from time to time.

 

ibuprofen combined with paracetamol, plus a heated back pad helps with GSF injection pain. Don’t suffer, talk to the chemo team.

 

Sending you a big hug.

 

Ruby xx

Member

Re: June 2019 chemo starters

Hi ladies how’s your day been?

fatigues kicked in again today and the worst ache/ pain in hips and lower back probably from injections. Had a letter from oncologist, well a copy of what he sent to surgeon which upset me a bit. I can’t have tamoxifen as I take sertraline and have for years so he’s written as she has 2 positive lymph nodes categorising her as high risk, he suggests I receive hormone therapy with an aroma tase inhibitor and zoledex for at least 3/5 years. I knew this bit the wording high risk had set me off again 😢 xxx

Member

Re: June 2019 chemo starters

Good luck.. 💖💖

Member

Re: June 2019 chemo starters

Make some prune buns, worked for me and give u something to do 😘


@Zed51 wrote:

Hi all. A week since my first FEC & I’ve had constipation & sore mouth issues but both seem to be subsiding using all those meds people have talked about. I have fuzzy head at various points in day but worse first thing I think. Not enjoying having the tummy jabs but only 2 to go now this time. I think the most frustrating thing is being at home alone when I’m used to being up & about & full time teacher. Life is usually packed so I’m trying to do some little things to entertain myself! Can’t focus on reading etc but having a dog to walk is very helpful. Hoping week 2 starting today means more energy but know it’s the more likely one for immune system issues. I need to learn knitting or something! 🧶 


 

Member

Re: June 2019 chemo starters


@felicidad wrote:

Morning ladies!I am glad to read about all of you.Today is day one of EC for me at 1pm and I am cold capping.A bit anxious but I have fabulous people round me who have helped me to prepare for it .

All the best to everyone x



Hope all runs smoothly xxx

Member

Re: June 2019 chemo starters

Hi all. A week since my first FEC & I’ve had constipation & sore mouth issues but both seem to be subsiding using all those meds people have talked about. I have fuzzy head at various points in day but worse first thing I think. Not enjoying having the tummy jabs but only 2 to go now this time. I think the most frustrating thing is being at home alone when I’m used to being up & about & full time teacher. Life is usually packed so I’m trying to do some little things to entertain myself! Can’t focus on reading etc but having a dog to walk is very helpful. Hoping week 2 starting today means more energy but know it’s the more likely one for immune system issues. I need to learn knitting or something! 🧶 

Member

Re: June 2019 chemo starters

Morning ladies!I am glad to read about all of you.Today is day one of EC for me at 1pm and I am cold capping.A bit anxious but I have fabulous people round me who have helped me to prepare for it .

All the best to everyone x

Member

Re: June 2019 chemo starters

It’s a good job we’ve got each other it makes all these abnormal things feel more normal lol xxx


@mini mad wrote:

I've had some sharp stabby pains in my head but not fuzzy feeling 😳😳 xxx



 

Member

Re: June 2019 chemo starters

I’m on ec epirubicin and cyclophosphamide. I will mention it next week x


@rubythursday wrote:

Hi Alvilajo, I had ear problems with carboplatin, lots of background noises, pain and super sensitive. Which chemo are you on? Might be worth checking if it’s a known side effect?

 

Ruby xx



@rubythursday wrote:

Hi Alvilajo, I had ear problems with carboplatin, lots of background noises, pain and super sensitive. Which chemo are you on? Might be worth checking if it’s a known side effect?

 

Ruby xx


 

Member

Re: June 2019 chemo starters

I've had some sharp stabby pains in my head but not fuzzy feeling 😳😳 xxx

Member

Re: June 2019 chemo starters

Hi Alvilajo, I had ear problems with carboplatin, lots of background noises, pain and super sensitive. Which chemo are you on? Might be worth checking if it’s a known side effect?

 

Ruby xx

Member

Re: June 2019 chemo starters

Hi ladies, has anyone else noticed a fuzzy head when turning quick or on hearing a loud noise,  more like a shock zap feeling, strange 🤔


Member

Re: June 2019 chemo starters

Someone mentioned tinned prunes in syrup the other day so I thought I’ll make some prune buns with them. They are yummy and hopefully will do the trick image.jpg

 

Member

Re: June 2019 chemo starters

I’m day 7 in and mines been a little sore for 3 days xxx


@Chicken81 wrote:

Hello ladies, 

I have had my first EC chemo and so far no sore mouth. 

When is it likely this might happen? 

I'm back next week so wondering if I should pre-empt and ask for something when I'm in next wk? 


 

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

Hi, you can buy Difflam over the counter, but you shouldn't have to.. I got given mine by the hospital.  It was not Difflam (as that's a brand name) but the hospital own stuff and then they gave it to me every chemo cycle.   If you are getting a thick furry white mouth/tongue it may be oral thrush and you need fluconazole for that.  I got tablets which I took 1 a day from the moment it started to fur and then for a bout 10 days.  They also gave me something to swish round my mouth but fluconazole is best.   Ask the chemo line or your Onc nurse about it, then you should get it every cycle with your other tablets.

It doesn't mean you will get the sore mouth every cycle and some don't get it at all, but its best to have something ready and as soon as I felt the slightly mouth problem I hit with the mouthwash etc.   

And just remembered I also used Biotene mouthwash after cleaning my teeth and sometimes during the day, its available over the counter (and you can get a toothpaste too) and its much milder than some mouthwashes and designed for chemo patients.. good when you mouth is sore.

Kip

x

Member

Re: June 2019 chemo starters

Hello ladies, 

I have had my first EC chemo and so far no sore mouth. 

When is it likely this might happen? 

I'm back next week so wondering if I should pre-empt and ask for something when I'm in next wk? 

Member

Re: June 2019 chemo starters

It’s especially frustrating when you are not necessarily feeling 100% anyway and even simple things can feel like a big effort!  I love and respect the people in the NHS, but the process and logic could really do with a rethink sometimes!  How daft that you have had to buy it over the counter when your doctor could easily have sent the prescription straight to a pharmacy of your choice?

 

I am sure you all do but just checking everyone has their free prescription card? 

 

Anyway, hope it helps with the sore mouth :-)

 

Ruby xx

Member

Re: June 2019 chemo starters

How wrong is that, I told my doctors what I needed on  advise from oncology dept, they told me easier for doctors to prescribe than waiting for hospital. It’s not easy Is it 🙄 I would ring doc back and complain xxx I’ve been prescribed chlorhexidine mouthwash!


@mini mad wrote:

Re Difflam...

 

so rang my dr surgery n spoke to pharmacy.  Xplained about my sore mouth and the chemo and said nurse said to get Difflam mouth rinse from them as my nxt session was this friday but i should start to use it now.

guess what....  they wont give me any because 1. Ive not had this before from them  😳😳  and 2.

they need to see a prescription from the hospital....  👿👿👿

eventually sent my hubby off to Boots chemist to buy it over the counter...  what a joke...😖😖

just another day....   stay strong...🤷‍♀️🤷‍♀️ xxxx

 


 

Member

Re: June 2019 chemo starters

Re Difflam...

 

so rang my dr surgery n spoke to pharmacy.  Xplained about my sore mouth and the chemo and said nurse said to get Difflam mouth rinse from them as my nxt session was this friday but i should start to use it now.

guess what....  they wont give me any because 1. Ive not had this before from them  😳😳  and 2.

they need to see a prescription from the hospital....  👿👿👿

eventually sent my hubby off to Boots chemist to buy it over the counter...  what a joke...😖😖

just another day....   stay strong...🤷‍♀️🤷‍♀️ xxxx

 

Member

Re: June 2019 chemo starters

Same problem here mini mad xx


@mini mad wrote:

Thanks Kip for your  reply.

i gave the team a call about my sore patches in my mouth and was advised to start rinsing with Difflam asap. ..  have quite a furry tongue now.   Not sure if its oral thrush, will the Difflam be good for that too ??

having next treatment on friday so will get the nurse to take a look 😳😳

Hope everybody is having a  reasonable day....  keep going 💖💖💖💖


 

Member

Re: June 2019 chemo starters

Thanks Kip for your  reply.

i gave the team a call about my sore patches in my mouth and was advised to start rinsing with Difflam asap. ..  have quite a furry tongue now.   Not sure if its oral thrush, will the Difflam be good for that too ??

having next treatment on friday so will get the nurse to take a look 😳😳

Hope everybody is having a  reasonable day....  keep going 💖💖💖💖

Member

Re: June 2019 chemo starters

Hi nic I started last week. I would defiantly ask for anti acid meds and a mouth wash, cold cap I was told conditioner and a water spray and a hat to wear home. Lip balm also rocket lollies are nice as I wanted cold and sweet. Ginger biscuits good for sickness apparently but I only had the one morning I felt sick. Good luck and let us know how it goes xxxx take note pad to write down tablets and times to take as you forget lol x


@nicolaJ wrote:

Hi everyone, hope you are all having a good day (well as good as you can under the circumstances) this thread is great for picking up advice and tips. Even though we all have family And friends to support us it’s nice to talk to people going through the same thing

.

I am starting my first EC session next weds with cold cap. Any tips on what I need to take with me or anything I need to do to be prepared?

not exactly sure what the process is on the day just that the nurse said i will be there for a few hours 

thanks in advance

Nic xxx


 

Member

Re: June 2019 chemo starters

Hi everyone, hope you are all having a good day (well as good as you can under the circumstances) this thread is great for picking up advice and tips. Even though we all have family And friends to support us it’s nice to talk to people going through the same thing

.

I am starting my first EC session next weds with cold cap. Any tips on what I need to take with me or anything I need to do to be prepared?

not exactly sure what the process is on the day just that the nurse said i will be there for a few hours 

thanks in advance

Nic xxx

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

Hi mimimad,  I suffered with a sore mouth too, I used salt water gargle regularly especially after eating. I was also given Difflam mouthwash and nearer the end I got Fluconizole tablets to take to combat oral thrush. I left it rather late to seek advice for the thrush on cycle 4 and let it get quite bad but I was ready the next cycle and hit it before it could start.   So get advice sooner rather than later.

As for diet advice I was told to avoid shellfish,  unpasteurised stuff,  soft cheeses etc.. Bit like being pregnant. Wash salads etc.   It's confusing when different hospitals say different things. 

Kip

Member

Re: June 2019 chemo starters

Hi Minimad, my only tip would be maybe give the chemo suite a call in the morning - they might want to give you something for the sore mouth. 

 

Liquorice is known for that that side effect 💩 and it tastes good!

 

Ruby xx

Member

Re: June 2019 chemo starters

Hi ladies,

 

so how are we all doing today ?

read your leaflets with interest,  dont think i was given any literature on what to eat/not to eat...

 

think the liquorice i had yesterday ' moved ' things this morning 😆😆😆so gonna take a piece everyday..

today i have 2 red sore patches on the roof of my mouth....  starting salt water rinses and will talk to nurses when i go for session this friday....  any other tips for me ??

onwards   Upwards..  xxx 💖💖💖

Member

Re: June 2019 chemo starters

The crossed out list is what has been superseded, I agree with you re the sandwiches though and most takeaways in my opinion are too risky. We cook mostly from fresh and grow some of our own fruit and veg, eggs come from a friend who rescues battery chickens so all vaccinated against salmonella etc and free range.

 

it is probably easier if you don’t eat those foods, I for one am craving Roquefort big time! :-) 

Member

Re: June 2019 chemo starters

Luckily I don’t eat the things it says don’t eat. I certainly wouldn’t eat a prepacked  sandwich after the watching the news x

Member

Re: June 2019 chemo starters

Interesting. This is what my leaflet says, some quite big differences? Especially the pro biotic yogurt bit and seafood. I was wrong about the eggs, but the nurse did tell me that!0AED1064-E47F-48C1-9B2C-2BE201CE696A.jpegCDC22065-B7FF-4ACA-9408-8DB44BC693A1.jpeg

Member

Re: June 2019 chemo starters

Hi ruby

This is the booklet I got last week , hope this helps xxx9D1C98E4-2D43-4E40-9670-E59C591BD928.jpeg

 

78D6E26C-7FC1-4F99-8EB5-FDB323E34079.jpeg

 

Member

Re: June 2019 chemo starters

Hello Ladies,

 

Hope today has been a better day? How are you all?

 

I have been thinking about the advice we have been given re food and drink on chemo and it occurred to me that we may have been told different things.  When I went for my chemo talk the nurse was very insistent to point out that the old advice (that I followed in 2011) had been updated and many of the no no’s from then are actually now ok.

 

so the advice I have been given is that anything pasteurised (cheese, pate etc) even soft cheeses is ok,  but not mouldy ones or unpasteurised. Eggs should not be raw but a reasonably well cooked dippy egg is ok. RAw meat and fish to be avoided, bagged salads to be washed again, alcohol in moderation, special occasions only. Personally, if I go neutropenic at any point I will avoid all the above for a while!

 

Curious as to what advice others have been given?

Ruby x

Member

Re: June 2019 chemo starters

Minimad - I cant speak for others but yes for me last time it got tougher as I got weaker. Some people genuinely sail through it though with few issues so try not to preempt!  I worked for the first four months of my last chemo in 2011, this time I haven’t worked since surgery. We are all individuals and there is no right or wrong way here 😊

 

Ruby xx

Member

Re: June 2019 chemo starters

Hey ladies, re alcohol - I was told special occasions fine in moderation, frankly any day I don’t feel like poo and it doesn’t make me feel poorly if I want an alcoholic drink I will have one! This is a long old road we are on, I won’t be done with chemo till at least Christmas and yes of course it affects the liver but my view is I want to live while I am alive. This is my second time with chemo and my fourth recurrence. Whether I like it or not I have been fighting this disease for more than ten years now.

 

chemo was and is for me a horrible melody of some good, some bad and some truly challenging times. Enjoy the good ones, whatever your joy in life is! Rubyxx

Member

Re: June 2019 chemo starters

Yes wedding was lovely thank u. Xxx

Member

Re: June 2019 chemo starters

Regarding alcohol, I was told the occasional drink was fine. But they said do be careful as you're right your liver is impacted on because of the chemo. 

 

I think I'll miss most the dippy eggs and poached eggs, as I was told no runny yolk. 

 

Started my training for the race for Life I'm doing between chemo cycle three n four. 

Deffo will be a fast walk, super slow jog. 

Team of 40 so far, so looking forward to that July 14th 

 

Kip Community Champion
Community Champion

Re: June 2019 chemo starters

Hi all,  sorry to hear some of you are getting some SEs but you are all doing well in seeking the right help and from your team.  I had to use Difflam mouthwash and helped a lot, also used cooled boiled salt water after every meal... That really helped too.  I remember the "I can't do this"feeling.. Hang in take a, day at a time.. You'll do it...im willing you on...Kip

Member

Re: June 2019 chemo starters

I wake up and think to myself " thats another day " nearer to competing my 12 weeks  👍👍

 tc xxxx 💖💖💖💖

did you enjoy the wedding ??