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June 2019 chemo starters

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 ??

Member

Re: June 2019 chemo starters

Hi Ruby,

 

glad you've managed to have some ' normality ' to your day and quality time with your husband.

im having my PICC line fitted thursday of next week,  the guy is on holiday this week 😖😖 typical....

do you think that side effects get more troublesome the further you go into the treatment ??

so far i feel ive been quite lucky ....  just waiting for the WHAM .....

 

noticed you mentioned a glass of red 🍷🍷.  I was told not to drink until i had finished the chemo.

its a strain on the liver apparently....  and i believe that one of our drugs does contain alcohol...

have read this somewhere on the internet....

hoping your ' good ' times continue.  tc  xxx 💖💖

Member

Re: June 2019 chemo starters

Aw bless ya your right. What a challenge we face ay xxxx😘

Member

Re: June 2019 chemo starters

You arent the only one who has thought " can i do this " ??

but we have no choice do we....   so when you are thinking this just try to remember theres an awful lot of us out here that are thinking exactly the same thing....but  we have to do this 💖💖💖💖

hoping you dont get too much nausea and the mouthwash helps... stay strong.

 

Member

Re: June 2019 chemo starters

Glad u had a nice day, I managed a nap too. Doctors prescribed my mouthwash which oncology recommended. First time today I’ve thought I can’t do this xxxx

Member

Re: June 2019 chemo starters

Hello ladies, for me  today was a good day, managed couple of hours looking at the beautiful garden at Grimsthorpe castle with hubby. Hips and back have bone pain now and I did have a three hour nap when I got home but all good! Enjoying a small glass of red now waiting for dinner. Fatigue is grim, but just keep going 😊 

 

Alvilajo, sorry today was tough - make sure you talk to your chemo team about the mouth if you haven’t already? Xx 

Member

Re: June 2019 chemo starters

1st rough day today, not much energy and felt so sick first thing but wasn’t. honestly thought I was going to pass out felt so crap but it passed as quick as it came on thankfully. I’ve got a swollen bottom lip and sore gum so ordered some mouthwash should be at pharmacy tomoz. How’s all you lovely ladies doing today xxxx

Member

Re: June 2019 chemo starters

Hi mine are 3 weeks apart and 2 weeks apart for last 4. I’m not working and haven’t since diagnosed, I work for Royal Mail and they have been great. Yes everyone’s slightly different with treatment xxx


@nicolaJ wrote:

Hi Alvilajo

Good to read your first session went ok, you hear of so many horror stories, how many weeks apart are your sessions? there are so many different types of treatment even when we seem to have pretty much the same diagnosis.

Are you working through the treatment? I’m hoping to just have a couple of days off afterwards but don’t know if I’m being naive, suppose will just have to see how it goes.

take care and look after yourself. Xxxx

 


 

Member

Re: June 2019 chemo starters

Hi Alvilajo

Good to read your first session went ok, you hear of so many horror stories, how many weeks apart are your sessions? there are so many different types of treatment even when we seem to have pretty much the same diagnosis.

Are you working through the treatment? I’m hoping to just have a couple of days off afterwards but don’t know if I’m being naive, suppose will just have to see how it goes.

take care and look after yourself. Xxxx

 

Member

Re: June 2019 chemo starters

My hubbys the best at injections yay 😁 1 done 4 to go 🤪

Member

Re: June 2019 chemo starters

Hi Nicola, very similar, had lumpectomy and armpit clearance 2 nodes involved. Having 4 rounds of e/c and 4 placlitaxel. Injections start tonight too 😬. First chemo was Wednesday and had 3 good days, sat and sun ok but bit teary. Indigestion as well so ask for some medication just in case you need it. I’ve had no sickness and today have had no steroids or anti sickness tablets and feel ok just a bit washed out now and again. Take care hun xxxx and decided not to use cold cap myself xxx


@nicolaJ wrote:

Hi ladies

I’m new to the thread and due to start chemo on the 26th June.

I was diagnosed in February and have had a lumpectomy and full node clearance after the biopsy showed a cancerous node.

Having 3 x EC and 3 x Doxcetol (not sure I’ve spelt that right) going to try with the cold cap and see how it goes.

Is anyone else having the same treatment?

Hope you all have a good weekend xx


 

Member

Re: June 2019 chemo starters

Really how Stange but good to know to prepare for anything xx


@mini mad wrote:

If you mean after my tummy jab then no i dont but this time i did get a little numbness under my eye on my cheek...


 

Member

Re: June 2019 chemo starters

If you mean after my tummy jab then no i dont but this time i did get a little numbness under my eye on my cheek...

Member

Re: June 2019 chemo starters

Mini mad, Do u feel achey quite quickly ? Xx

Member

Re: June 2019 chemo starters

Had my first jab just now after 3 days off.

john is doing them for me and i found them not painful if you find a good solid roll of tummy fat !! And hold it tight between your fingers..  you'll find your own way of doing them thats best for you xx

good luck withtonights injection... xx  the first is the most worrying...xx

Member

Re: June 2019 chemo starters

Thanks Jencat 👍

they did give me Isobon tablets daily but had horrendous chest pain so having the infusion every 6 months for 2 years..  onwards n upwards.. 💖💖

Member

Re: June 2019 chemo starters

Hi mini mad,

I think Zolindrome could be the same or similar to Zoldronic Acid which I had every other chemo and have every 6mths for 3 years.It is a bone strengthener, but also my onc said it was to help stop cancer spread to the bones x

Member

Re: June 2019 chemo starters

I start the injections tonight I’m not sure who’s more nervous me or hubby as he’s doing them xxx

Member

Re: June 2019 chemo starters

Yes I am having Carboplatin every 3 weeks then Paclitaxel weekly. Filgrastim is suspected as the cause of my 12 day migraine from hell that had me hospitalised for five days first cycle. Not looking forward to doing another course starting next Saturday!

 

never had Zolindrome.

 

Ruby xx

Member

Re: June 2019 chemo starters

Hey Ruby,

 

are you having carboplatin every3 weeks with Paclitaxel every week ?

how does  Filgrastim affect you ?  I seem to get painful knees.

nxt friday after my 3rd session im having another infusion called Zolindrome.. ithink ...

something to do with calcium keeping bones stronger.. you had this ??

sorry its all questions....but thank you...💖💖💖

Member

Re: June 2019 chemo starters

Thank you I certainly won’t put myself through that again xx hope your ok xxxxx

Member

Re: June 2019 chemo starters

Sorry lovely to hear you had a rough time at A&E.   Did you take your red card with you to show that you are having chemo treatment ???

i have also had real painful chest pain.  Took Lansoprazole at home but spoke to chemo nurse last friday during my treatment and she sent the doctor to me for a chat.

he has prescribed Omeprazole but so far 🤞🤞🤞i havent needed to take one yet.

wondering if maybe it was because i had 2 chemo drugs on my first session and now i have just one for 3 weeks..

chin up....a day at a time..... we're all here to chat and offer advice it we can 💖💖💖

Member

Re: June 2019 chemo starters

Thanks ruby, it was horrible. I slept well tho but teary this morning. I think my anxiety has raised its ugly head over last few days. I think I’ve coped really well up to then. I will ring my doctors tomorrow for a prescription xxxxx

Member

Re: June 2019 chemo starters

Welcome nicolaj and charliehedgy 

 

Alvilajo I am sorry you had such a rubbish time, that absolutely should not happen if I was you I would make a complaint. 111 is perfectly capable of faxing a prescription for a chemo patient directly to a pharmacy you should not have needed to sit in a and e at all as if they suspected infection oncology should have called you in. I know for a fact 111 can do this as they did it for me yesterday when my uti recurred, I spoke to oncology who referred me to 111, I had a telephone consult with doc and he faxed a prescription to my local Asda within about fifteen minutes.

 

if you have to go to a and e again make sure you tell them you are on chemo and you may be neutropenic. They should at least try to isolate you away from people who may be infectious.

 

you might need something a little stronger than the over the counter stuff, omeprazole and lansaprozole are both good. Your gp or your chemo suite can prescribe these, as can 111.

 

Pick yourself up, dust yourself off - you will be fine 😊 sending you a big hug, Today is another day, you have got this!

 

Sorry if I sound bossy (I am) but this kind of thing makes my blood boil and is totally avoidable when on chemo!

 

Ruby xx

Member

Re: June 2019 chemo starters

Hi Minimad, I am on carboplatin with weekly paclitaxel. Yes I have the Filgrastrim on days 2-6 then 16-20 of the cycle. Filgrastrim doesn’t like me much!

 

Ruby xxx

Member

Re: June 2019 chemo starters

Hi ladies

I’m new to the thread and due to start chemo on the 26th June.

I was diagnosed in February and have had a lumpectomy and full node clearance after the biopsy showed a cancerous node.

Having 3 x EC and 3 x Doxcetol (not sure I’ve spelt that right) going to try with the cold cap and see how it goes.

Is anyone else having the same treatment?

Hope you all have a good weekend xx

Member

Re: June 2019 chemo starters

Worst evening, rang out of hours oncology for a prescription to get some anti acid tablets and was advised to ring 111 which I did, then told to go to a&e. And say I’ve been told to get there within the hour!! Sat there for 2 1/2 had blood pressure done then sat again waiting. Ended up having panic attack in waiting room and had to get out. What a state to get in, I left couldn’t face going back in. Bought some gaviscon and going to bed now feeling embarrassed and low. First chemo was Wednesday and was feeling ok 🙁

Member

Re: June 2019 chemo starters

Hi every He, 

Also a June starter I’m starting on Wednesday 19th. My surgery that was planned for Monday 17th has been cancelled and we are trying chemo first. Anxious nervous and apprehensive aabout starting but I’m trying cold cap a well. Had some hints and tips from a few others in a thread who have had massive success. 

Member

Re: June 2019 chemo starters

Hi Ruby,

thx for your reply.

are you having to have the tummy injections ?  To encourage bone  marrow to produce more white blood cells ?

sorry...chemo brain already 🤪🤪...  whats your treatment plan again ??  Xxx