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December 2020 Chemo Starters

higgi
Member

Re: December 2020 Chemo Starters

Hi everyone lovely to read your updates ! 
think I might try the antihistamine to sleep better ! 
I was surprised that I had a really off sickly day yday day 15 post cycle 2 ! But today I’m ok ! Cold sores in nose improving ! I’m still missing walking outside as we still have lot of ice here n it snowed again ! I’m big into exercise and was put in touch with this website 

www.cancerfit.me 

please take a read it’s fantastic and so encouraging. It’s the one thing that’s within our control snd has amazing benefits . Lots of useful info on there ! 
I seem to be eating more than ever as if I feel sickly , eating helps ... the more I eat the better I feel .... dangerous 😂 

keep getting spots on chin like a teenager ! Not impressed at all . 
head but itchy other wise no pulling now ... hardly any hair left . 
dodging covid n any other bugs as always n hoping covid doesn’t ever stop our treatments !! 
busy week next week ... min repeat breast mri to check ow cancers responding to 2 rounds of EC Tuesday bloods wed chemo round 3 hopefully !!! 
big hugs to u all ! Stay safe ! It’s ok to have ups n downs . Crying is a release it’s perfectly ok xxxx 

grannyp
Member

Re: December 2020 Chemo Starters

Hi @Woodybird 

Yes, it certainly is distressing when the hair starts to disappear. Mine started gently moulting about a week before my second EC and shedding quite heavily a couple of days later. The amount that comes out in the comb or your hand is definitely alarming! I also had thick hair and by the time of my second treatment I knew it was much thinner and the nurses could see the thinning but no-one else would really have noticed. It continued to shed at the same alarming rate for another week and I now have very thin patches on the crown. But whilst it is still shedding it has noticeably slowed since yesterday. I am just waiting what happens now.

I am trying to follow all the advice that Paxman give online and in their literature. They do say that you will shed all the way through treatment although it will slow down at times, so although I don't like it I expected daily loss. They also advise not cutting all the hair off if you can as having more hair gives more scope for covering thin patches and also it may make it easier to have a half decent hairstyle after the end of treatment. I know that a lot of ladies do cut or shave though as they hate it if gets all wispy and lank and also it reduces the amount of shed hair that they have to deal with on a daily basis. I can totally understand that! For the moment I am managing with wide stretchy hair bands which cover the thinning area on my crown - this is working well at the moment and helps me to feel as if I have relatively normal hair but I may well have to get the clippers out if I have another big loss after - or even before - the final EC. One thing I am trying to focus on is the Paxman advice to concentrate on the hair you have left, rather than what you have lost. And I am putting my faith in the cold cap helping to promote quicker hair re-growth. This will keep me cold capping even if it becomes more uncomfortable with less hair - and my nurses totally agreed as they have seen the better re-growth in many people.

I hope that your hair loss slows down in a few days and you just have to do what you feel comfortable with - we are all individuals who handle this rollercoaster in our own way.

Hoping that any side effects continue to be manageable and good luck with the rest of your treatment. Counting them down now!

 

 

Woodybird
Member

Re: December 2020 Chemo Starters

A belated happy new year to you all!

Had my second round of EC yesterday. Seem to feel a bit more nauseous than last time but still manageable. 

I used the cold cap but my hair is dropping at what feels like an alarming rate, since Monday. Having a thick head of hair, I think it's only me who can notice the difference so far. But like so many have said, it's quite distressing, particularly as I'd left it quite long at shoulder length. Can anyone advise if it slows down and after how long? Really considering getting the clippers out if it's going to continue.

On the plus side, still getting out for daily walks of varying lengths. Always beautiful, even if it's cold or cloudy, or as today, foggy! Also started a meditation, which I've never done before. Takes a bit of getting used to but I think I like it!

Positive thoughts to all those who've just had treatments or are about to have ❤️

grannyp
Member

Re: December 2020 Chemo Starters

Hi @donkeywoman 

Yes, I was eager to get my 2nd treatment done so that I would be one-third of the way through but like you I was dreading feeling grim again for a few days. I had to go back and look at what I had written about those early days to remind myself of how I actually felt as the two weeks of feeling normal had sort of blocked out the memory of the first few days. Hoping that your bloods are fine and good luck with your treatment tomorrow. 

Today I had that wonderful feeling of waking and feeling 'like myself'. I have felt pretty much ok for the last couple of days but today is definitely a step up. I appreciate I am lucky with this and that not everyone gets to feel like this. I also know that I could be hit by other side effects and that I will undoubtedly be more tired as the cycles progress - this 'normal' feeling has already come a day later in the 2nd cycle compared to the 1st. For now, I will try to forget about the next treatment as much as I can, get on with as much work, personal and household stuff as I can and definitely exercise as much as possible.

Hope you all have as good a day as possible and keep counting down the days until we get to the end of this chemo nightmare! 

 

donkeywoman
Member

Re: December 2020 Chemo Starters

Morning all, @grannyp as often, your words really chime with me. That swinging feeling from 'I can do this, it's only a few months, it's winter, it's covid, just keep my head down' to 'I can't do this, where can I run to to escape it all?'! I've had a really good few days, felt pretty much back to 'normal' and even had some sleep. But, if bloods okay, my next treatment is tomorrow. I've just taken first dose of steroids, so it's all starting feel real again. I do want to have it, as I will then be 2 down, a third of the way through. But then I remember all those moments of just feeling a bit grim. 

I don't know how everyone else feels, obviously, but I feel that each of the symptoms I've had (apart from the pain and sleeplessness) have been quite minor. But then I realise that, once they all come at once - loose bowels, stomach ache, sore, dry mouth, fatigue, low mood - that is quite a lot to deal with! I do find it quite helpful writing my symptoms down, and now I can at least remind myself that there will be good days towards the end of the cycle. 

Being outside and moving definitely helps, but I seem to be more feeble about the cold than I used to be. And my husband clipped my hair last night, so several hats will probably be needed! Yoga is good - I've not done any for a while, but maybe I will find something on you tube and get back to it. 

How is everyone else doing? 

It's a beautiful crisp, frosty and sunny morning here in Derbyshire today. Once I've had the call from the hospital, I'm going out for some deep breaths.

Hope everyone has the best Thursday they can x

grannyp
Member

Re: December 2020 Chemo Starters

Just checking in to say hi to everyone and hope you are all managing to stay as positive as possible. Seems that many of us are experiencing a few more side effects but fingers crossed that these all stay manageable. We are all part of the way down this path now and in reality it won’t be that long until we are starting on the homeward strait. It still seems a long way off right now and I have to admit to having many moments when it all just seems too much and I just want to run away and never go near the hospital again!! I am sure I am not on my own with still wondering how on earth I arrived at this point and how I will ever manage to get through the next few weeks. But somehow we will keep on going. The current grim weather and grim news doesn’t help but I am trying to focus on things that make me feel brighter. Walking further again each day really helps and today I did a yoga practice for the first time in 3 months - only 30 minutes and a very gentle one but it really felt good! Hope you are all finding something to raise the spirits anc keep yourselves going. And good luck to all of you with appointments and treatments over the next few days, 

PaulineS27
Member

Re: December 2020 Chemo Starters

Hi @donkeywoman and all, 

I am so glad that it helped and you managed to get some rest.

Take Care x

donkeywoman
Member

Re: December 2020 Chemo Starters

Hello @PaulineS27 and everyone, well I took an antihistamine last night and definitely slept better! I was able to lay down all night and, although I still woke every 2 hours, I got back off to sleep much more quickly (a podcast about Brexit did the job!). So thank you, I will keep going with it. I just read a different thread on here about Herceptin (mine is Tratsuzomab) causing lots of aches and pains. Bit grim if it is that, as I've only had the first injection of 18! But I'm glad there could be a simple option for some relief, so thank you for the suggestion. x

PaulineS27
Member

Re: December 2020 Chemo Starters

Hi @donkeywoman,

I'm doing ok, it isnt a walk in the park but I'm ticking the treatments off as I go.

I hope the anti histamine helps with the aches and pains.

Take care of yourself x

 

 

PaulineS27
Member

Re: December 2020 Chemo Starters

Hi, Yes definitely worth it if it stops nail damage. I have two toe nails that are a little discoloured but nails are still looking healthy so far 

Hair loss isnt easy that's for sure but we have got this! 

Shine13
Member

Re: December 2020 Chemo Starters

Good moring all.

I shaved the hair at the weekend and I felt much better.  I had really thick hair so as it shed I found the fine hair really depressing and felt much better when it was shaved off.  Sleeping is prob my biggest issue often awake in the ealy hours and stuggle to get to sleep.  My EU is every 2 weeks and it is usually better in the second week.

@PaulineS27 I use that stuff for nail beds as well it was recommended Polybalm £20 a tube and you need two. Worth when it you hear about nails falling of though probably rare.

 

donkeywoman
Member

Re: December 2020 Chemo Starters

@higgi , ouch that does sound sore! Hope you can get the treatment for that... thanks, I wasn't worried about the nose blood, but it is good to know that it is expected. Everything just seems to get a bit more gross... my hair is starting to drop now so I think it is time for the clippers to come out.

The sun has just come out here in Derbyshire,  hope everyone sees it today xx

higgi
Member

Re: December 2020 Chemo Starters

Hi @donkeywoman @and everyone! 
I do get blood in nose ... yes my chemo nurse warned me of it it’s very normal ! At mo I’ve got cold sores inside nose ... I was prone to them before ! Really sore ... gonna check whether I can take aciclovir during chemo as that’s wat I used to take ! 
hope you all ok xxx

donkeywoman
Member

Re: December 2020 Chemo Starters

@PaulineS27 thanks, I will try an anti histamine tonight! My treatment is different (TCH) but I have to take Cetirizine the day before anyway so it's obviously fine. 

Thank you,  I'm doing okay, how about you?x

PaulineS27
Member

Re: December 2020 Chemo Starters

Hi @donkeywoman,

I have had bone pain and read a thread on here about taking antihistamine tablet. It has helped with pain and if taken at night (which I do) it helps me sleep. I googled drug interaction and antihistamines are ok with EC chemo.

I hope you are doing ok, it's not an easy journey but we will get there 

Take care 

PaulineS27
Member

Re: December 2020 Chemo Starters

Hello,

Have you tried Polybalm for your nails, so far it has helped mine. It's fairly expensive but clinically tested and I feel it's worth the money.

Hope you are doing ok on your chemo journey x

donkeywoman
Member

Re: December 2020 Chemo Starters

Thanks @higgi and @PaulineS27 and all. Good to hear the positives about picc lines... can't help wondering if it will happen now (appointment isn't til 27th) we are in lockdown and the hospitals are so stretched. 

I don't know about sleep, I've not been a good sleeper for a while but it's been much worse...I have one or two hours at a time. I think that chemo just messes everything up! 

Hope everyone is as okay as possible and not too miserable about another lockdown xx

PaulineS27
Member

Re: December 2020 Chemo Starters

I really didnt want a PICC line, I have young children and was also worried about it being knocked and bumped, I also wanted to feel as 'normal' as possible. I relented and actually I hardly even notice it anymore, other than covering. I purchased fabric picc line covers and they are fab.

higgi
Member

Re: December 2020 Chemo Starters

Hi @donkeywoman  .. I get the bone pain on last day of injections day 8 and it’s like my sacrum pulsates then it’s on n off for following week but not too bad .. all around hips . I take paracetamol n ibu after checking temp of course for 2 days usually . 
funny u shed say about sleep ... I’m not really in any pain but hardly sleep at all ! I fall asleep ok then I’m awake from 1 .. best I’ve done is til 3 . So I have no trouble getting up at 6 as I’m fed up by then of being in bed ! I use a diffuser with calming aromatherapy oils n play meditation tracks if desperate (haven’t done that this cycle yet)

im not sure why it affects sleep as I’m not worrying like I did when 1st diagnosed n was waiting to start treatment. ??? Any ideas .. I know steroids affect but that’s only 1st few days if taken later in day and I don’t . 
 
Re the hair ... it stopped tingling for me after it fell out . Like I said it hadn’t all fallen but wud b incredibly thin if left long 😂. Not sure if more will fall with next cycle . Then my last 3 cycles don’t cause hair loss so it shud start to grow back in spring 😊 

I eat more sugary stuff than before .. think that’s due to the metallic taste in mouth thing ... that’s my excuse 😂

yes glad festive season over but still got a huge chocolate cake to eat as it was my sons bday yday !!! 🤪😋 

it must be hard not being able do things you used to do with the animals but it’s temporary and soon you will be back out there in full control ! 
hopefully this icy patch will pass n we can all get walking again . 
take care everyone xxx

 

 

donkeywoman
Member

Re: December 2020 Chemo Starters

Thanks @Karden , I spoke with the nurses when the pain first started and I thought it was the injections, she just said to take painkillers and that it would go once injections finished. But I haven't rung again as I  have had it before (pre cancer) although I don't think it stopped me sleeping so badly. I just think that everything is heightened at the moment... I will speak with the Dr or pharmacist at my check in on Thursday. 

By the way - does anyone else have constant blood in their nose?! I don't really have nosebleeds, but it is always there and everytime I blow my nose. I'm assuming this is to do with lowered platelets..

The joy just doesn't stop, does it?!

Karden
Member

Re: December 2020 Chemo Starters

Hi @donkeywoman ,

I'm sorry you're in pain and not sleeping, one is bad enough but both is really debilitating. Have you spoken to your medical team to see if they can advise?

I'm always worrying about taking various meds at the same time but have come to realise that we need to do what we can to get us through this as best we can but taking professional advice along the way.

I'm also glad the festive season is done, it also means that we've all managed to get through another milestone and are nearer to the end of our treatments.

I'd hate to be going through this in a summer heatwave, I'm not great in hot weather at the best of times. At least we've got heating and can add or remove layers as needed.

Glad you can enjoy tea again, I'd kill for a good old cuppa. I've tried coffee and fruit/herbal drinks but not good. Currently sticking to squash, cloudy lemonade and orange lucozade but it's very boring! ☹️

 

Karden
Member

Re: December 2020 Chemo Starters

I'll have a look at that @higgi , I definitely need some motivation! Also would benefit from the moisturiser, my face is really dry and also the skin around my nails.

Let's hope the ice clears soon and then we can get out again. 

donkeywoman
Member

Re: December 2020 Chemo Starters

Good morning @higgi @Karden @grannyp and everyone, it's good to hear how everyone is doing and I like your idea of the 5k, @higgi, I might give that a go! And I use that Superdrug cream, love it, it's cheap, straightforward and very moisturising... 

Sorry about your hair @grannyp , mine has just started shedding, day 18 after first Doxy. My head feels a bit weird, like when you are really cold and it goes all tingly. I'm thinking about asking my husband to clip it down to a number 4 - any thoughts? Once it has gone, does the weird tingly feeling go?

@Karden I've been keeping my fingers crossed that your mouth is better this time... My taste has never quite come back, but this week I've started drinking tea for the first time which is a joy.

My only real issue now is sleep, which has never come back properly. I thought that I had a bad response to the filigrastim injections as I had severe pain in my shoulder and arm (left, mastectomy was right) as well some as discomfort in hips and legs (not bad). But I've now realised, as it hasn't gone away, that I've just hurt my shoulder! It's a real pain as I can't get comfortable in bed and am pretty sleep deprived. I'm not meant to take ibuprofen (because I take aspirin for a pre-existing condition) but have resorted to it a couple of times. But in some ways it is good as I hopefully didn't get particularly pain from the Filigrastim.... swings and roundabouts! I wonder if it can exacerbate muscular/bone pain? 

On the whole, I'm glad it is winter that I'm having chemo in, as it's not much fun anyway, let alone with Covid, But the weather is a pain and it is hard to try walking in icy conditions. I worry more about falling over, as presumably we are more likely to bleed/bruise. Fortunately we have a bit of land and I have hens to visit daily - it's so muddy that if I fall I will just get filthy.. But I am being careful around mucking them out, for infection risk. My husband is doing most of the animal care, which has always been more my role. I'm lucky to have him of course, but I feel a bit useless... 

Hope today feels a bit easier for everyone - I don't know about anyone else, but I'm quite glad that the festive season is over... x

higgi
Member

Re: December 2020 Chemo Starters

Hi everyone! Hope u all ok . Yes I’m struggling with the icy conditions here n Bolton it’s treacherous underfoot so can’t get out walking at the moment. I tried but I was slipping everywhere and was not enjoyable.  
I look bald to the eye but there’s stubble when I feel ... guess it’s very thin stubble 😂 

thought I’d share a few things you might find useful ? 
I bought a litre of body vit E cream from Superdrug on line fast delivery for £7 a bargain it’s fab ! 
I also entered the erdinger5kmoveagsinstcancer event this January . You just move 5k anyway u like and you get a medal whilst giving £5 to a great cause ... lovely bit of bling ladies !! You can just move about the house it all counts !  I’ve also joined their FB group move against cancer ... keeps me motivated to keep moving . 
 Big hugs to you all! Xxx

Karden
Member

Re: December 2020 Chemo Starters

Hi @grannyp 

Good to hear from you, it's been quiet on here recently and I hope it's because everyone's doing ok.

I'm sorry to hear that your hair is shedding even though you're using the cold cap. I decided against the cap but the shedding is a real nuisance, the hair gets everywhere. At least my problem has gone now as I have no hair left.

I too have been much more tired this time and am feeling a bit fed up of just sitting around, watch tv, reading etc.

We have had snow and the ground is very icy now so I've not been out. I'm hoping to do some homeworking tomorrow which might get my brain cells going again.

My taste has gone again but it did come back after about a week so I'm hopeful it will do the same again this time.

Sending you and everyone hugs. x

 

 

 

 

grannyp
Member

Re: December 2020 Chemo Starters

Hope everyone is managing ok & happy new year to you all. 
Had 2nd EC on Wednesday & not too bad. The nausea eased in less than a day this time but the tiredness has hit me big time! I had tiredness with cycle 1 but since yesterday afternoon I have been completely wiped out! I do think I may have overdone it a bit at first - after two weeks of feeling completely normal I think I forgot to expect several days of fatigue etc at the beginning of this cycle. Must be more sensible for cycle 3!! 
Hoping for a reasonable sleep tonight & just maybe I will have more energy tomorrow 🤞 Weather too bad to go for a walk today which hasn’t helped- I couldn’t have gone far but even a very short walk does help. 
I really dislike bring so lethargic & listless but know I just have to go with it. My mood isn’t helped by my hair shedding very heavily. So far the cold cap is helping me keep some hair but I think it will be extremely thin in a couple of days. No real bald spots yet but very thin, moulting constantly & I dread combing!! But nothing I can do about it & just have to get on with it like so many others.
Good luck to anyone having treatment this coming week and hope everyone else stays well 😊

Karden
Member

Re: December 2020 Chemo Starters

Happy New Year everyone!

3rd day of 2nd chemo cycle and not feeling too bad.

I went to bed last night with a bloated stomach but I think it was due to all the meds I needed to fit in during the day. At least the 3 days of soluble steroids have now finished and I only have 2 more of days of antibiotics so that should be a bit better.

I will continue with anti sickness tablets for 5 days as a pre-emptive as they worked well last time and I didn't suffer at all with sickness or nausea.

I've lost most of my hair in 3 weeks and now have just a light fluffy covering. I must admit that I hate seeing myself like this and have taken to wearing turbans and scarves.

I have a wig and currently waiting for my hairdresser to trim the fringe for a more tailored look.

I'm still enjoying my food but expecting my taste to change again anytime soon. Just hoping for better management of mouth ulcers if they come back again. Hopefully, the stronger meds will help.

Hope the new year has started well for you all and that you're coping OK. X

 

Shi
Community Champion
Community Champion

Re: December 2020 Chemo Starters

shine ❤️ You might find some friends do a beam me up scotty and disappear you might get text a month from them, don’t worry about it, everyone reacts differently and then when you are through they beam back down and pick up where they took off from. You will find kindness of strangers and from the most unexpected of people, just concentrate on you because you are still you, if ‘friends’ need to beam up scotty then that’s up to them but for right now you look after you do everything your way and keep 😁💕💕Shi xx

donkeywoman
Member

Re: December 2020 Chemo Starters

Hello all and all the best for the New Year - hopefully we all have lots to look forward to - particularly finishing chemo! I'm considering a small glass of wine - I haven't had one for nearly 3 weeks, so will probably fall over! But I'm day 13 and my mouth feels as 'normal' as it has done...  

@Shine13 re friends - I must admit that I am probably the one who has backed off. I seem to find much contact at all way more stressful than it should be. I think that talking about my chemo and the effects is just boring, but it is also mostly what I am thinking about... So I'm pretty much sticking with whatsapp as I can then just send something when I feel like it. The covid situation kind of works for me, as people can't come and visit anyway! Miserable so and so... I think it's only fair that I save my little bit of sociability for my husband as he is taking the brunt of this in many ways. But I have certainly heard from other friends who've been through this that they've been surprised by some responses, but good and bad..

Hope everyone can raise a glass of something nice this evening and say a not so fond farewell to 2020 x

Shine13
Member

Re: December 2020 Chemo Starters

I am day 20 EC and have found the second cycle easier than first, I asked the oncologist if they were giving me enough chemo as I was expecting a lot worse, generally the symptoms are manageable - fingers crossed, day 5 and 6 seem to be by worst days as well.  I  swap to taexel/tratuzumab etc after two more cycles for 12 weeks.  (under the Marsden) Sounds like there are few on this it seems to be the HER2 regime. So I guess symptoms will be different hopefully not worse.

@dipitdee  keep taking the anti- sickness they are strong drugs. If vomiting hits you won t keep them down and get into a vicious cycle. There is a big pschological element so much easier to control  if completely suppressed and you don t get the associatted nausea triggers with certain food smells. So important.

Definately chemo brain - took ages to write this can t remember how to spell anything., Hair is shedding and getting thin will have to clip this weekend. Am really pleased with the wig will definately work on zoom calls for work next week.  I have a great selection of knitted hats by friends in many colours. TIP  - I am told I will need to wear hats in bed as you get much colder without hair. Cut an old t shirt in half then the bottom half you can double twist round your head for a snug hat that stays on in bed.

Friends reactions are interesting - anyone found a few surprises and some close friends avoid you while others you did nt expect really step up. 

Happy New Year I ll been in bed for 10, think I will manage one glass of champagne the first alcoholic drink since chemo.

Xx

 

 

 

higgi
Member

Re: December 2020 Chemo Starters

Hi @Jet75 @and everyone! 
love sharing n reading your experiences ! We all so similar and it really helps to share . 
despite 2 rough days 5 n 6 I bounced back like tigger this time 😂 however today is day after last injection n the sacrum is pulsing ( that’s wat I get ... it’s like it has a heart beat !)  . So no temp so I can take paracetamol n ibu today . 
I haven’t stopped my regime of 1 movicol n 1 omeprazole and I haven’t had any indegestion or constipation.. bloody brilliant ! . 
the hair is shaved as short as clippers go ! There’s still hair I can feel it but I guess it’s super thin n very grey /white with black on crown 😂... oh yes I have the front tuft too . I always had a low hairy neck line ... this is holding fast 🤣 leg n pubes thinning but eyebrows n lashes still there ... I didn’t have much anyway ... my 18 year old daughter always says “ow come u no eyebrows?” As she dyes a thick slug line in every few weeks on herself 😂

I really have chemo brain ! I can’t find right words say wrong thing forget everything... but I laugh 😂 a lot . 
big hugs thinking of you all with chemo today and soon and getting those lines in HAPPY NEW YEARS EVE ! ❤️

Jet75
Member

Re: December 2020 Chemo Starters

@higgi  is this what round 2 brings ! Our recycle is tomorrow so left my husband in charge of sorting it tonight, your poor collecting guys will wonder what you are up to ! 

I joined the group but been quiet since my 1st chemo on the 10th but been reading your tales ! I'm back for 2nd Dox tomorrow. 1st went well really, not too many side effects, a bit tired (not much) more got rubbish acne spots on chin, felt like a teenager and some on chest and heat rash on neck, but to honest I am putting this down to the filastram injections as these side effects went (along with the last few days of shooting back pains) once I stopped them. Just had some allergy tablets. Not lost me appetite, taste a bit off but didn't stop me, so fingers crossed it carries on this way. 

Hair !! Well I cold capped but it still started coming out around day 12. So yes I still have it but feel like a cross between a balding man (as the sides, back and tuft at front are still quite thick, but the rest is thinning) so I put this as the "old gran" when the hair is thinning and I have had a "wash and set" and combed through (cut my hair short and it has a natural wave) oh to have me lovely long hair again 😢 so tomorrow can't decide whether to cold cap again or not - suppose I will decide when I get there and maybe ask nurses advise. All I have to do is run my hands through my hair and get a handful. 

So wishing you all the best through the next stages of.  

treatment and let's hope it is kind to us. Wishing everyone a happy new year (even with our unfortunate positions and the covid lockdowns) but we have families to enjoy with. @higgi  did you mean new year not Christmas ??? 😉

Jayne 

dipitdee
Member

Re: December 2020 Chemo Starters

Sounds like different areas are doing COVID tests differently. I had one before my first treatment but none for my second. Good luck tomorrow @grannyp  and sorry to hear about your A&E experience, that sounds horrendous. They really freak you out about infection don’t they? Hopefully it’s easier this time around now we know what to expect. I’ve got my movicol at the ready and I’ll probably do what I did last time and take the anti-sickness meds for the first few days on a pre-emptive basis. 
I’ve been able to go on my walks every day and this time I’m hoping to start back at Yoga on a more regular basis too although I did find last time that I just couldn’t concentrate long enough to bother the first week. Hoping my toothache doesn’t come back.
Good luck everyone, stay positive xxx

donkeywoman
Member

Re: December 2020 Chemo Starters

Hi @higgi @grannyp @Karden and all

Oh dear, that A and E visit sounds a nightmare... and so pointless! worrying that the Dr didn't know about Filigrastim and the white cell count, but hope you are okay now. I'm wondering if my picc line insertion will happen. I have to go to Sheffield as they don't do them in Chesterfield and, if the Covid numbers keep going up, maybe they will stop them. I don't really mind, I didn't want one in the first place, but was convinced by the nurses. My vein seems fine from the first treatment, but 5 more to go. And the phlebotomist did moan about taking blood from my mastectomy side last time... 

@Karden fingers firmly crossed that your mouth is better this time. I do use the Biotene mouthwash, which i think works, although it's a funny texture isn't it? I use ordinary sensitive mouthwash first, for the freshness, then the Biotene for the moisturising. 

@higgi does sound as though we have similar symptoms - I think I just need to get my head around the fact that this is how it will be, and stop waiting to suddenly feel 'normal' again. Me too re flushes - I'm used to being rosey and having menopausal flushes, but I must say the steroid flush was something else! To be that red without a drop of alcohol...

I was feeling a bit tired and gloomy this morning but remembered the mantra and went out for a walk, in the cold and light snow. Once I got going it did help, but I'm very slow, so don't get far! But an hour outside and I felt better emotionally and physically - and had a wee nap in front of Emma!

Good luck those of you having treatments this week x

higgi
Member

Re: December 2020 Chemo Starters

Hi @grannyp @that’s a horrible experience! Really sorry some docs are crap even tho most are amazing . Hope all goes ok now 

..having EC x3 then the 2nd regime x3 ( doc/p/t... I’m her2 positive and had 2 lymph involved ... so chemo 1st mastectomy and radiotherapy... taking one day at a time 😂

know Sheffield really well went to uni there ... many moons ago ! I’m Manchester ... place called Bolton but go to Christie’s for last 3 cycles . 

i have very similar symptoms... mouth taste , gurgly tummy, achey , ... hot flushes big for me (I had em before 😂) also I get the flushed face so no need  for blusher ... I look better than I did before 🤣
big hugs to you all and stay safe xxx

grannyp
Member

Re: December 2020 Chemo Starters

Hi @donkeywoman 

Port fitting didn't happen! Ended up going to A&E two days before as I had been shivery and cold. All a false alarm but we are all new to this and are constantly being told to watch for any signs of infection etc, so I decided to go rather than wait and possibly feel worse during the night. Well, what can I say - a truly horrific experience!! My 'vitals' apparently made me borderline for a possible infection - not in need of immediate antibiotics but bloods needed. After hours waiting for blood tests and then results the doc gave me an antibiotic shot 'just in case'. Eventually found I had a somewhat high white blood count. I tried to tell him that this may be a result of the 'boost' injection I had the day after treatment but he didn't seem to know about these and just said there may be an infection - or possibly cancer!! - somewhere. He even whispered the last bit to me! He did know that I had had successful surgery. My unit confirmed that this would have been due to the boost and were very cross about his attitude.

Anyway, as I had been to A&E after my covid test I couldn't have the port procedure as I had broken isolation. So cannula again tomorrow. I have been for bloods today and they will try to re-schedule the port before my next treatment. No guarantee that it can be done as the theatre at my hospital is closed until next week and I know that they are extremely short of theatre time. The nurse felt that as I am only having six treatments there is unlikely to be a problem if I don't have the port but obviously there is still a risk.

 

Karden
Member

Re: December 2020 Chemo Starters

Hi @donkeywoman 

re Covid tests - I'm being treated at Weston Park in Sheffield and have a Covid test a few days before each Chemo date, then last one was done a bit earlier (Christmas Eve) because of the Christmas holidays. I got a negative result by text the next day. I have been to see my oncologist this morning and had my height, weight, temperature and bloods done. They have given me a Covid swab pack to use before 3rd chemo in 3 weeks.

I have returned home with loads of meds - new prescription mouthwashes plus soluble aspirin to use as a gargle to combat a repeat of the 15 mouth ulcers I had from 1st cycle and a different antibiotic to sort out the UTI which still hasn't gone completely. I had a urine test on Christmas Eve whilst at A&E (due to allergic reaction to first lot of antibiotics) and it has shown that the uti needs a different antibiotic - hope this one works.

Re dry/sore mouth I would try Biotene mouthwash and /or toothpaste or soluble aspirin to gargle. I have been lucky not to have nausea or sickness but I did have a metallic taste and nearly everything tasted of salt. Luckily, my taste for most things returned almost to normal and I have been enjoying proper meals for the last week. Still can't have tea or chocolate though - tastes really bad!

I had mild diarrhoea on and off for about 3 to 4 days but the meds sorted that out

I am on Docetaxel, Cyclophosphamide, Trastuzamab and Pertuzamab (x 4 cycles) prior to a lumpectomy, my tumour is HER2 positive. They are going to reduce the amount of the first 2 drugs tomorrow, hopefully to address the mouth ulcer situation.

I hope everyone is coping well following their 2nd cycle and good luck to everyone else if, like me, you are about to have another cycle.

donkeywoman
Member

Re: December 2020 Chemo Starters

@grannyp I meant to ask you how you got on with having your port fitted before Christmas? Hope it went smoothly x

donkeywoman
Member

Re: December 2020 Chemo Starters

Morning @higgi and everyone. Hope day 7 does bring the improvement you are waiting for. The steroid thing is so weird, isn't it... 

I'm day 12 after 1st TCH (which, oddly, stands for Docetaxol, Carbaplatin and Tratsuzomab) - is anyone else having it? I know most of you are on EC, but I think I can't have that because I have a cardiac history... 

I wonder if anyone has a similar experience to me? I feel as though I've been lucky with the 'major' side effects - no nausea or vomiting, my mouth is dry and a bit sore, but no ulcers, I've been up every day and can eat okay (even if it all tastes yuk). But... I can't sleep, I have back and shoulder ache, my nose is irritated and bloody (not major nosebleeds), my stomach feels empty and gurgly, I have low level diarrhoea, wind and gut ache. None of it feels enough to contact anyone - my temperature is okay, I'm eating and drinking okay, I can function. Maybe this is just how it is? Any thoughts or tips gratefully received!

By the way, re Covid swab - I didn't have one before treatment, just the questions and temp check. I'm going for a picc line at the end of January and have one for that... I guess it's different at different places, I'm under Weston Park (Sheffield) but have treatment at Chesterfield.

On a lighter note, I have a nightshirt from Seasalt being delivered today - I'm sure that will transform everything! 😁

Hope all your Tuesdays are as good as they can be xx

grannyp
Member

Re: December 2020 Chemo Starters

Hi everyone

@dipitdee  and @higgi I was told before my first treatment that I would have a covid test once a month - not quite sure how that works with a 3-weekly cycle! Don't know if that has changed now with Tier 4 restrictions but I am off for bloods today before 2nd treatment tomorrow, so will see what they say.

I also get what I have been told is the best anti-sickness tablet for the first two days. It did seem to work as I only had very mild nausea - I was told to expect some as I have experienced both travel sickness and morning sickness. I had no trouble eating and in fact during the second of the three week cycle I ate everything in sight - if not locked away, I ate it!! This actually appeared to be my most noticeable side effect and it did calm down in the 3rd week.

Walking is what keeps me sane at the moment. I get out twice most days but definitely once and it improves the mood considerably and is actually the best thing to do if your energy levels are a bit low - even a short walk in the fresh air is great.

Good luck to everyone having treatments this week. I am definitely not looking forward to going back and going though it all again tomorrow - not in a good mood at all!! But I am just trying to make myself focus on the fact that it is another one down - a third of the way there for me.

 

higgi
Member

Re: December 2020 Chemo Starters

Hi everyone! Hope you all ok ? 
@dipitdee 

yes I was the same and I also thought they’d do a temperature check but didn’t . 
day 7 post 2 nd cycle n hoping today to start feeling a little better . My pattern seems be to crash day 5 when my body realises there’s no steroids 😂 .. I read the book ... everything you need to know about breast cancer ... chapter on chemo ... n made self walk ... it worked .. it wasn’t as bad as I thought ... nothing terrible happened... I was ok 😂 ... then I crashed on settees! 
I have a very strong anti sickness tablet just on day of chemo as I’m under Christie’s so apparently I get the all singing all dancing tablet ... so I eat anything n everything!  I still have the metallic taste but it doesn’t stop me ! . 
a friend told me ginger beer helped her so I bought a crate load in ! N guess what ? It really turns my stomach so hubby is ploughing through it 😂

wishing you all the best with your upcoming treatments .ps  I didn’t stop my indegestion n constipation regime n so so far so good this cycle ... 

WE ARE STRONGER TOGETHER 

WE ARE AMAZING 

WE ARE SMASHING THIS ! X

dipitdee
Member

Re: December 2020 Chemo Starters

Just been for bloods today ahead of 2nd cycle on Wednesday and really surprised that I didn’t get another COVID test. Just wondering if this was usual? I expected we’d get one before every cycle.

JuliaS
Member

Re: December 2020 Chemo Starters

Hello @grannyp 

I have the same , if I run my fingers through strands come out and it is certainly a lot thinner than it was but no clumps as yet. 
I found the cold cap OK the second time so definitely worth persevering. 
Good luck with your treatment and enjoy the rest of Christmas. X

grannyp
Member

Re: December 2020 Chemo Starters

Hi @JuliaS

Good to hear that the 2nd treatment went well & all seems ok so far. I had the horrid slimy mouth with my 1st cycle - I haven’t really suffered with the metallic taste that I was warned about but had  the slimy feeling for around 4 days which was not pleasant. 
How is your hair? Are you still only getting minimal loss? Mine started moulting a couple of days ago and now there is a bunch of strands coming out if I comb or put my hands through. I wouldn’t really describe it as ‘clumps’ yet but the amounts are increasing. My second treatment is next Wednesday, so will see how much has gone by then. But I am just hoping that I can keep some hair and I will definitely continue with the cold cap. 
Hope that all of you ladies who have recently had your second treatments continue to stay well. And good luck to all those having treatments next week. 

Karden
Member

Re: December 2020 Chemo Starters

Hi @JuliaS 

Yes, the taste thing is slightly different for all of us isn't it, mine started recovering after about 10 days too.

I have just started sleeping through the night again but I think my sleeplessness was largely down to my painful side effects keeping me awake rather than actual sleeplessness. I too read a lot when wide awake or visit this forum, it certainly helps to pass the time when you're feeling as though the whole world is sleeping except you.

I hope you recover well from your 2nd treatment.

Best wishes to all. ♥️

 

 

JuliaS
Member

Re: December 2020 Chemo Starters

@higgi Morning

i had second EC on 23rd and a great nurse who explained everything really well. She said the C goes straight to your head and has most effect there which made sense. I put the silver foil in the freezer and then spent ages looking for it! Too right about leg hair , I thought losing  that was going to be a silver lining but it is growing like crazy! 
Enjoy the rest of Christmas! 

JuliaS
Member

Re: December 2020 Chemo Starters

Morning @Shine13 

I too had second EC on 23rd . I persevered with a bad headache for a few days last time (days 5 and 6) especially and didn’t take any paracetamol as had been advised not to initially as could mask a fever. This time the nurse said take your temperature first and if OK go ahead and take paracetamol. Might be worth checking out with yours if it continues. 
Hope you have a good day today. 

JuliaS
Member

Re: December 2020 Chemo Starters

Morning @Karden 

So glad you felt better and were able to enjoy Christmas Day . I had my second EC on 23rd and knew from last time that 25th would coincide with a horrible slimy mouth. I stocked up on mouthwash , sherbet lemons and pineapple and managed to keep it at bay all day. 😀
Can’t face a coffee though and I am the same with chocolate. My taste went back to normal after about 10 days so am saving them for then! Sleep is being elusive though apart from if I sit down to watch the tele. I did manage Vicar of Dibley last night but it only lasted 7 minutes! Luckily I have a light up kindle so read through the night. Hope you keep well through this Christmas like no other in so many ways! 

Karden
Member

Re: December 2020 Chemo Starters

Great advice about the mouth ulcers, I'll ask my oncologist on Tuesday.

Now some good news for a change. Having returned from A&E on Christmas Eve, I felt really well and ate normally for the first time in ages and again on Christmas Day, even managed a small portion of Christmas lunch. 🍗🥕🥔

Tried a square of chocolate but still tastes odd so I'm avoiding any kind of confectionery, a teeny weeny piece of Christmas cake brought on diarrhoea, obviously too rich for me at the moment. ☹️

However, I had my first hot drink in 10 days, a latte out of our machine and it was good, still no tea though.

It's such a pleasure to finally have some good days.

Just one thing, my scalp is really tender even though I have left an inch of hair on. I think I'll leave it alone for now as I'm wearing turbans and it's going to fall out anyway.

Hope you all managed to have a decent Christmas Day. 🎄🎁

 

 

Shine13
Member

Re: December 2020 Chemo Starters

Hope you all have good Christmas well as good as it can be in this odd cancer and COVID times.  I had 2nd EC cycle yesterday and apart from a hangover and bad head not to bad.  I got an expensive hair cut to go short  (what a waste of money) so putting off a shave untill the first clumps come out in the next few days.

There have been some threads about awful mouth alcers. A friend of mine had tongue cancer and they have a horrendous time with radiotherapy a lot end up with feeding tubes.. She recommends to wash out your mouth with 300 mg dissolved aspirin but don t swallow. Also get a doctor to persctibe instillagel. It is a local anaesthetic but would give some respite for a break to eat for those who get it really bad.

Keep safe.

Xx