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November 2017 Chemo Starters

Community Champion

Re: November 2017 Chemo Starters

Hi Lesley

The tingling in your hands and feet is a side effect of chemo. You may have a little bit of neuropathy, as it can effect the nerves. I certainly had this in my feet. I think it started about half way through my first cycle. So I mentioned it at my next appointment. The oncologist made a note of it, but didn't seem particularly worried. I think it lasted maybe a month and then went. You should tell your team, as if it gets worse then they could adjust your chemo. But I just wanted to assure you that it is common. Just let the oncologist know before your next cycle.

I can't remember my breast feeling any different, but I do remember it seemed to attack all my weak points. Again, let the oncologist know.

Best wishes

Sue xx

Member

Re: November 2017 Chemo Starters

It could be a normal side effect and then you can stop worrying about it and concentrate on fabulous you xxx
Member

Re: November 2017 Chemo Starters

yes I've got a number - I know I need to call Smiley Sad

 

xx

Member

Re: November 2017 Chemo Starters

Morning Lesley,
Did they not give you a number to call with any questions??? I would definitely be calling them to ask about tingling just for your own piece of mind so you can stop worrying????
Good luck xxx
Member

Re: November 2017 Chemo Starters

morning all

I'm on day 6 now and hopefully coming out the other end.

Yesterday was my first steroid and anti-sickness free day - I feel nauseous all day, but managed to eat and wasn't sick.

I have woken feeling nauseous again today.

 

There's a couple of things I wanted to run by you ladies......

The first one is just a feeling, nothing I can put my finger on, but my lumpectomy site 'feels' different.  Not in a physical way that you touch it, but from the inside.  I have felt more 'aware' of it for the last few days.  I have checked and it's not swollen, it's not hot, nothing looks different from the outside, it just feels differnet from the inside - denser somehow.    I probably sound like a mad woman!!!

Has any one else experienced this??

 

Also I noticed a slight tingling in the sole of my right foot on Sunday night, it has persisted but got no worse, it is only very slight, not even pins and needles but it is there.

Overnight I was woken with the same tingling in my right hand.  I got back to sleep again and it's not in my hand this morning.  My foot is still tingling.

 

I have no contact with the hospital until 48hrs before my next session when they check my bloods.  Should I be telling them about this tingling in advance?

 

Any advice gratefully received! 

 

thank you xx

 

Member

Re: November 2017 Chemo Starters

Morning ladies,
I feel like I've been let off lightly this cycle. Fingers crossed it continues. I didn't get any injections so after 4 day hangover I've not been too bad.
Although day 14 lady tuft has started to go. It's not like I had to get up this morning and Hoover the bed. Just coming out in sprinkles :0(
Otter hope your smashing that application!!!
Anadan did you get a wig???
I've ordered one I've not tried on after the cheeky bob that wouldn't be ready till feb ha!!!
Hopefully I get it this week for another day in the city. Love the Christmassy shops :0)
Happy Tuesday everyone xxx
Community Champion

Re: November 2017 Chemo Starters

Hi

Chemo certainly messes up your periods! After my second cycle, I had one that lasted 2 weeks, which is unheard of for me. Then I didn't have one at all! 

At the end of my chemo, they put me on zoladex and letrozole, so I haven't had a period since. Every cloud........!

Hugs

Sue xx

Member

Re: November 2017 Chemo Starters

Hi anadan

Hope the wig shopping went ok mine sat in bedroom on plaster head but not sure if I will wear it 👩

 

Periods 🙃 I'm at that funny age when I have no idea what they are meant to be doing 😕 the last one I had was when I was 1st diagnosed back in July but my body is definitely having a laugh as day 5 it decided to give me the heaviest longest ( still going) I've had in years just when you don't want one😥😣

 

Just as long as it hasn't affected my blood count 😱

 

Hi ok perfect you are all keeping nice and warm

Member

Re: November 2017 Chemo Starters

Hi anadan, I had my last period just before chemo 1 and not had one since despite the nurse telling me it should happen, it's now nearly 3 weeks late. I'm going to ask about it again tomorrow whilst I'm at chemo 3, but I think they can stop, some ladies on our October thread have still had them.

Member

Re: November 2017 Chemo Starters

Hello Ladies,
I don't have any pains after 3 injections so far, fingers cross it doesn't change ... I self administer them, it's not too bad, we can do it 👊
My Epsom salts have come and everybody in the house had a relaxing bath apart from me as I'm on my period ... do you think it's my last one ?😢 I can't stop thinking it's my last one 😢
My mouth went a bit dry and 'wrinkly' on day 5, but I rinse it regularly with benzydamine which I got from the hospital, so far so good x
My hands are terribly dry.

Now off to my first appointment for a wig 😬

Have a good day and stay strong xx
Member

Re: November 2017 Chemo Starters

Morning ☀
I hadn't heard about clarytin and wonder if this us something worth trying. I had a couple of ibuprofen yesterday and only had slight back pains last night. With the clarytin, is it just one a day for the duration of the injections?
Back to the hospital later for bloods & info in preparation for having a port fitted on Saturday
Member

Re: November 2017 Chemo Starters

hi blueash

thanks for the tips, just to confirm, do you take the clarityn with the injections or wait for the joint pain and then take the clarityn?

I'm not a wuss when it comes to pain, but always better to avoid it in the first instance!!

thanks for your help

Lesley

Community Champion

Re: November 2017 Chemo Starters

rabbit I finished my Herceptin in August and you will be amazed at how quickly those injections come around. Chemo is the hardest part of this journey and after that everything else seems easy.

 

I had my diagnoses in May of last year. Surgery in June, chemo with Herceptin early August and rads in November. My chemo was cut short because my blood counts went too low to continue with it.

 

I remember feeling overwhelmed at the thought of going through all that I did but knowing that others have been there and come through it all was such a help xxx

Community Champion

Re: November 2017 Chemo Starters

Claritin hay fever tablets with take away any bone pain from the g-csf injections

http://myangrycancer.blogspot.co.uk/2013/02/claritin-is-worth-its-weight-in-gold.html

Member

Re: November 2017 Chemo Starters

Hi November ladies! I think it does depend on where you are. I haven't been given any injections, maybe some hospitals see how you cope without first (maybe to save them money, but also save you from additional SEs and drugs if you don't really need them).

 

Lesley, I didn't really suffer from nausea on first cycle I also had meds for 4 days and didn't get any second wave of nausea so you should be ok. I did have some donperidone that they said I could take if I did feel sick, but I didn't need them.

 

Hopefully I'll be having my 3rd fec on Tuesday  🤞🏻bloods will be ok.

 

The weather is really miserable here now ☹️ A good day to be snuggled up on the sofa!

 

Enjoy your Sunday afternoon ladies!

Member

Re: November 2017 Chemo Starters

Hello November team, I am just checking in to see how you're all doing?

 

I am on day 4 post first cycle of the 8 cycle accelerated EC-T regime. Not too dreadful so far (lots of wood touching going on as I write that and I know it probably will get a lot harder but I am trying not to look beyond the immediate). Some nausea, but not unbearable. I have exercised every day, although not felt like getting my kit on and no where near my usual pace/range, I have been so much better afterwards. Getting out for short stretches has also helped even if I felt like hibernating. Sleep has been a bit up and down and it is in the small wee hours that the racing thoughts and anxieties creep in, but I am trying to breathe deeply and not panic when those moments strike. I am cooking and doing basic stuff around the house and also managing to work from home, although I crash out by 9.30 p.m and need to go to bed. Mouth made much more comfortable by Biotene and skin which has flared up/dried out horribly already is soothed by bio oil and heal cream. We'll see what happens, but it is just great to know there is a crew of chemo buddies with invaluable wisdom and support from those who have gone before me. Thank you everyone. xx

Member

Re: November 2017 Chemo Starters

Hi all

I haven't been given injections but a course of antibiotics for 7 days l think my hospital only give the injection if your white cell is low

Or maybe I didn't get them this time as count was ok and if they are painful anyway it would have added to my FM

 

Will ask next visit getting a rather long list for oncologist😯

Community Champion

Re: November 2017 Chemo Starters

I didn't have any injections?! Don't know why but cell count was fine throughout. You can buy diflam over the counter but ask for it on prescription so you don't have to pay. I was given it with each round of chemo.
Member

Re: November 2017 Chemo Starters

Hi Lesley, I'm from the August thread. I just wanted to let you know that not everyone has side effects from the injections. I've had between 5 and 7 days of them for all 5 of my sessions so far and I've had no side effects at all. Also, like you I had minimal nausea. It's unlikely that you will get a second wave, I never did.
Love to all November ladies xx
Member

Re: November 2017 Chemo Starters

Thanks Sue, that's reassuring to know - I finish tomorrow so hopefully everything will be ok after 👍
Member

Re: November 2017 Chemo Starters

Thanks Ali, yes I was in tears too and normally I have a high pain threshold, but this was agony. I onlt have a dull ache now and am not looking forward to last 2 injections but thanks for saying it doesn't too long 🤞
Can difflam only be bought by prescription? I'm mouthwashing daily with Aloedent but difflam seems to come up a lot so wondered if it's worth giving it a go.
Otter, hopefully your oncologist will be able to give you something for the pain and wouldn't it great if this cloud had a silver lining by easing other problem areas. 🤞
Lesley, my cake cravings have passed, except I now have a cupboard ful!! Anyone for tea & cake??
With the injections - I was ok until last night but I'm on 10. They are quite straightforward - my belly looks like a dot to dot. It's looking a good day for a walk 👣😎
Take care everyone & enjoy your Sundayand without rain there wouldn't be rainbows 🌈 🤗☄💫
Community Champion

Re: November 2017 Chemo Starters

Morning Ladies

Gcsf injections....... these seem to vary depending on which hospital you are at. Like you Lesley, I had 5, but some get more and some don't seem to get them at all. (Unfortunately, I think its down to cost) . They are used to boast your white blood cells, which in turn are there to fight infection. The injections are very effective. I managed to get through chemo without picking up an infection. However, as always, there are side effects, and this seems to be joint pain. Ibroprofen worked well for me. The pain is very short lived. As soon as I stopped the injections, the pain went away the next day. It's just another thing to deal with unfortunately.

Best wishes

Sue xx

Member

Re: November 2017 Chemo Starters

Morning all

I am day 4 now, so last day of sickness and steroid meds ... not sure how I feel about that.

I think the fatigue may be passing as I couldn't get off to sleep that well last night, so I am taking that as a definite positive.

Other than the first evening, I havent had much sickenss or nausea ..... so now I am worrying, is there a second wave about to hit me???

 

I am worried about these injections, firstly about administering them.  It seems ridiculous to get a DN to come around to do them so I agreed to do it and I am sure once I do one I will be fine.  But I am also worried about the side effects.  Bad joint pain doesn't sound appealing at all!!  I am having 5 days worth, is this what everyone else has??

 

Anyway, I am going to try and get out for a walk and do some washing etc today and try and eat a proper meal rather than the comfort food I have been eating so far.

 

love and hugs to everyone

xx

Member

Re: November 2017 Chemo Starters

Hi ladies

Thanks for all the advice my mouth has been a bit sore and was using the Corsodl mouthwash but finding it makes my mouth sting. even when diluted so will ask about the other

 

It would be great if chemo would cure FM but as its not an inflammatory condition but a neuropathic one I don't think lm that lucky and as I'm having FECT apparently the T bit can make it worst 😥 so as this first one was bad enough going to need something else to get me through 

 

On the upside if it's going to help my IBS that would be great🐶

Member

Re: November 2017 Chemo Starters

JC the pain is fhocking i knoe. It is like a throbbing of the bones in your back and pelvis. Made me cry and i'm.not a wuss!!

The co codamol and bath do help. Also the ibuprofen in between. It ladted anout 30 hours for me then just went so take heart. I am day 5 cycle 3 today so 5 injections to go.nit usually hapoens on day 9 for me too but i am not going to think about it just yet.

Hope you feel better soon.

Sore mouth - definitely Difflam and Daktarin oral gel. Suffered badly first round despite using biotene. But as soon as i got difflam and gel it eased. My doc put it on repeat prescription for me so 2nd cycle i headed it off by ising difflam straight away and i am doing the same again this time.

I also get cold sores and the blisteze intense moisturiser has been amazing for them.

Keep going ladies. We will all get there eventually xxx
Member

Re: November 2017 Chemo Starters

Wow!!! I'm in an Epsom salt bath just right now. It was day 9 and it was going so well - the fog had cleared  and life seemed back to normal.  Yay!!!! Or so I thought  ...

About  10.30pm my lower back started to ache and then wham!!!! The pain just hit me, a bit like a contraction pain in waves, there was no relief from it.  I tried going to bed but this pain wouldn't be ignored. I ended up taking an ibuprofen and phoning the hospital.  I spoke to a very nice doctor who explained that it was probably due to the injections - I have had 8 & have 2 left!! He said I could take ibuprofen & codeine 3 times a day, drink plenty of water & a bath may help.  So here I am ...

Guess I'll be having a lie in tomorrow 🤞💫☄

Community Champion

Re: November 2017 Chemo Starters

Hi ladies I'm from November 2014 thread! Definitely recommend the difflam mouthwash.

It's interesting to hear about your aches and pain otter and buddyfan. I found the reverse during chemo that my back pain (from an accident 30 years ago), arthritic wrists, knees, toes and IBS all disappeared during chemo and for about 6 months after! IBS is still under better control than ever!

My oncologist said it's common for pain caused by inflammation to reduce because of anti-inflammatory properties of chemo.

Epsom salts very good, keep pacing yourselves and prepare food etc during your good weeks.

A little exercise, relaxation, meditation helps too. I was introduced to Yoga Nidra during radiotherapy and found it very helpful - you can download it for free online, have to listen to a few to see what works for you.

Keep going ladies, it's tough but you will get through it xxx
Member

Re: November 2017 Chemo Starters

Otter, my sil with FM said pace yourself. If you do something one day make sure you rest the next........listen to your body and not to fight it. Also keep warm.
Member

Re: November 2017 Chemo Starters

Hi Buddyfan

 

Thank you I will have a look at the course

 

 

I'm already on amitriptyline, pregrabelin and codine maximum dose so will ask oncologist if the is something I can take for the breakthrough pain

 

At least pain has calmed down now but just can't face having to go through another week like the last😞 and I don't feel safe to drive yet as concentration is shot which as hubby doesn't drive feel I'm just stuck in doors🏠

 

Will try to finish knitting my hat for when my hair goes as not sure if I want to wear the wig 👩

Hope everyone is doing ok at least I seem to be getting my taste back 🍰🍫🍬🍩 so chocolate here I come😊

 

Member

Re: November 2017 Chemo Starters

Hi Otter, I’m from the October board but Ruth said you are struggling with fibromyalgia pain. I don’t have f but I do have nerve pain with severed nerves from an accident in 1979. My sil also has fibromyalgia and has been through chemo for myeloma so I’ll ask for any tips.

Re nerve pain, if you aren’t already on amitriptyline or pregabalin, it might be worth seeing if your gp would prescribe them. They would start you with amitriptyline, but I would try and go straight to pregabalin. If you do, make sure you slowly build it up, otherwise you will have horrible side effects. I’m on 150mg x2 day. I also take dihydrocodeine for break through pain. As a side product, you will be on stronger pain killers than non-nerve pain chemo ladies, so it helps the chemo pains.

Generally, both I and my sil found a reclining chair invaluable to help with bone ache.

I was recommended mindfulness by a friend with fibromyalgia. I’m currently doing a course with my pain clinic. But actually anyone can do the course. Go to https://palousemindfulness.com/ and just work your way through the stuff on the left. It’s free, no registration needed.

One of the best nerve pain relief techniques is distraction. If I can do something that is engrossing, often the pain will go, even though I am fully aware of my paralysed arm. So, puzzles, Sudoku etc. For me it’s embroidery which I had started doing about a year ago, before bc reared its life blip.
Shi Community Champion
Community Champion

Re: November 2017 Chemo Starters

For the sore mouth see if onc can prescribe difflam mouth wash. I didn’t get sore mouth as been using biotene mouth rinse, but the difflam just gives your mouth an additional punch of keeping germs at bay so if anyone’s starting with mouth thrush, get onc to prescribe this for you. 💕💕✨✨shi xx
Member

Re: November 2017 Chemo Starters

I've found this forum a lifeline, we're on this journey together. The whole chemo thing seems a bit of a roller coaster ride 🎢 and although we may be having different symptoms there seems to be someone who can help or make you laugh 😄

It's good to connect to ladies who are going through the same tough times and understand ☄🤗

Member

Re: November 2017 Chemo Starters

No worries Sue, I'm happy to try and provide any help I can to help ease others SEs through this assault on our bodies. The last thing we want is to hear people suffering if we can offer some tips to help. Our thread has quite a lot of ladies and we're a very chatty sharing bunch so even if I haven't experienced some of the SEs I've read and supported them through theirs! Hope you have a great day! 😊

Member

Re: November 2017 Chemo Starters

ah thank you. It' good to have this forum. Everything is abit scary and new.
Member

Re: November 2017 Chemo Starters

Afternoon everyone - hope you're managing to enjoy the weekend.  Weather doesn't inspire getting out for a walk. It's day 9 for me and from yesterday it seems as if I have come out of a fog 😀 🎉

Lesley and AnnaKarenina, hope you're both doing ok  and have been drinking plenty.

Anadan, our hospital has a MacMillan unit attached for help and advice for wigs, scarves etc,  maybe see if your local MacMillan 's can help you or advise you where to go.

Otter,  I'm glad you're feeling as if you've turned the corner and you have more time for your application.  Hope you have some success with your oncologist as there is enough to put up with.

Welcome TrishJune, I have a teaspoon of manuka honey daily as well as mouthwash (without alcohol) and so far so good 🖒☄🤗

Community Champion

Re: November 2017 Chemo Starters

Morning Ladies

Just wanted to say hi and see how you all are?

Thank you to Meesh and Chaffinch for popping in. It is so helpful to the new Ladies. Sometimes they come up with issues that I didn't encounter myself, so I don't always have the appropriate advice, so thanks.

Best wishes

Sue xx

Member

Re: November 2017 Chemo Starters

Sorry to hear about your pain issues Otter, chemo causes aches and pains if it’s own do you have a regular consultant who deals with your FM who could liaise with your oncologist?
Trishjune, welcome. I have found Biotene Mouthwash, toothpaste and gel very good for my dry mouth. I’ve used the mouthwash regularly throughout the day from day one of first cycle and have only had a couple of ulcers and the tip of my tongue has been sore a few times. It gives great relief. You have to properly swish it around your mouth for about 30 seconds which seems a long time. If I feel an area that stings slightly I concentrate on keeping it there for a few seconds. I seem more prone right at the back of my jaw. So far so good. They are not cheap but seem to work. Biotene is specifically for chemo and medically induced mouth problems. Superdrug sell the mouthwash and I think Boots sell all 3. I have continued to use my electric toothbrush too and clean my teeth 3-4 times a day for the first couple of weeks while my mouth is dry. 2 cycles in and this regime seems to work.
Member

Re: November 2017 Chemo Starters

Hi Otter, sorry to hear your FM is causing issues, hopefully the lady from our thread will be along to help soon. Have you tried bathing with Epsom salts as I know others have recommended that for aches caused by chemo? Sending you 🦄🦄✨✨🦄🌟💫💫🌟⭐️✨🦄 🤗🤗🤗🤗 

Member

Re: November 2017 Chemo Starters

Hi Trishjune, sorry to see you here but the forum is brilliant for support, advice and laughs along the way. I haven't suffered with a sore mouth, but I know some other ladies have and have advised to use a soft kids toothbrush with some diflam mouthwash which they have got from doctors or chemo team. It might be worth calling your emergency number as they maybe able to provide you with something. Others have recommended gargling with salt water or with water mixed with bicarbonate of soda. That may help you until you can get something else sorted.

 

ive just been following my normal cleaning routine of electric toothbrush (but on slow setting), airflosser with corsodyl mouthwash (which some others also recommend for sore mouth) and corsodyl mouth rinse after.

 

Hope that helps and hope you get it sorted soon. ✨💫💫⭐️✨🌟🦄🦄🦄✨⭐️⭐️

Member

Re: November 2017 Chemo Starters

I'm new and any tips would be gratefully received. Had my first chemo 10 days ago and doing OKish but if any one has tips for mouth ulcers I's be very grateful.

Member

Re: November 2017 Chemo Starters

Hi Otter there is a lady on our October thread who is also dealing with pain issues alongside her chemo I will see if she can pop over to this thread and say hello to see if she has any helpful advice ♥️ Ruth
Member

Re: November 2017 Chemo Starters

Hi Meesh

 

Thanks I'm starting to finally turn the corner on this 1st cycle 🤗

 

I think I will have to talk to the oncologist about how they are going to manage the rest as I don't feel just cause the unit doesn't understand FM I have to basically suffer as otherwise it will be hard to put myself through this as the Onotype was borderline and I'm still finding it hard to accept that I really need Chemo

 

I know giving up isn't really an option but end of February seems a long way off if I'm going to be so unwell and in unbearable pain all the time

 

Work have at least given me a week extra to complete my job application as not had two brain cells to rub together

 

Hope all you ladies are having a better start 🤗🙃

Highlighted
Member

Re: November 2017 Chemo Starters

Hi November ladies, good to hear you're all coping ok. 

 

Anadan, you may want to think about the wig sooner rather than later (even if you don't end up wearing it). If you can get an appointment whilst you still have hair they have more chance of matching it to your natural hair. 

 

Otter, hope you're doing ok, I do pop on here every few days to check how you're doing! 😊😊😊

Member

Re: November 2017 Chemo Starters

Thank you for all the good vibes and supportive thoughts. I am doing okay. A bit nauseous and a little disconnected from my normal state, but I went for a walk this morning and had a long chat with my oldest school friend which were both therapeutic. I am taking it moment, but moment and trying not to worry about what lies ahead. I am thinking of you all and experimenting with the food, comforting rituals and general distraction. You are all such a strong team to be part of - I am beyond grateful. xx

Member

Re: November 2017 Chemo Starters

Hi there 😚

Lesley, hope you’re feeling okish today x I felt very nauseaous for the forst two afternoons, then better. Nibbling on almonds seemed to help a bit. 

AnnaKarenina, are you ok?

Rabbit, good you have a plan, it makes things rolling on slowly x

 

I feel a bit tired today (day4) don’t know if it’s because I don’t take the steroids any more or because I didn’t have a good nihgt sleep Smiley Sad I woke up at 2 am with a terrible pain in my chest, as if somebody squeezed it really really hard. It lasted a few seconds, and it was only one of, but I phoned the hospital this morning; been told to keep an eye on it, it might be the steroids... hope it doesn’t come back.

 

off to amazon to buy some epsom salts for my achy bones tomorrow as I have to start the injections.

 

I haven’t booked my appointment for a wig yet, just can’t get round to it... not sure if I ever wear it... don’t know how I feel about it. Still have my hair, but what when it’s gone and I really need that wig? 😱

 

Take care xxx

Member

Re: November 2017 Chemo Starters

It's good that you have a plan Rabbit, but I agree it does seem like a long haul.

 

I found it better to break it down into bitesize chunks, you will get breaks inbetween the different aspects I would have thought??

I've planned in treats inbetween things so I have something positive to aim at.

 

Thinking of you and sending hugs

 

xx

Member

Re: November 2017 Chemo Starters

Looks like I now won't be joining all you brave ladies in November, the oncologist has scheduled my chemo to start on the 1st December as my echocardiogram is on the 30th November. Feel slightly happier now I have the treatment plan in place but the end seems a long way off. 6 sessions of chemo with herceptin, then 12 more injections of herception every three weeks, 2nd op after chemo ends, then radiotherapy then tamoxifen for 5-10 years.  One postive is they will come to me at home for the 12 herceptin injections or my workplace if I prefer!! Seems quite daunting. xx

Member

Re: November 2017 Chemo Starters

that's really bad Bythesea

I used Joseph wigs - all on the internet and quick delivery

hope you get yourself sorted soon

xx

Member

Re: November 2017 Chemo Starters

That’s ridiculous, no way to run a business. You will have about a month from first chemo until significant hair loss but not 3 months! Hope you find one soon, although I actually feel far more myself wearing colourful scarves.
Member

Re: November 2017 Chemo Starters

Good morning,
Well done Lesley sounds like your on the way back up.
Annakarenina hope you are too xxx
I got a call from wig shop yesterday to say it will be ready in February!!!!!!!!
Back to the drawing board. :0(
Milliemoo hope your ok???

Have a great day xxx