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February 2021 Chemo Starters

Kaz11
Member

Re: February 2021 Chemo Starters

@Gelbel 

Oh you made me laugh there with the hair discussion 🤣 as you say the things we talk about on this forum!

You reminded me that despite being told my eyebrows wouldn’t grow back in at the moment that silver grey ones are actually growing below the dark ones.  I would normally be plucking them out because they are not within the natural arch however I am actually going to leave them there in defiance for now as I am just amazed that they have appeared at all.  If only some similar activity was happening on my head...

Kaz11 x

Gelbel
Member

Re: February 2021 Chemo Starters

Hello everyone,

I hope you are all doing ok and coming out of the side effects of your latest cycles. 🤗

I'm joining the weekly Pax brigade, starting 9 April for 9 weeks.

I didn't have my onc consultant appointment today. One of the Dr team called a few hours before my appointment time and said that unless I had in-the-moment side effects I needed help with, it would be a waste of my time as I'd need to go next week for bloods ahead of the chemo. So we rescheduled to next week but he did confirm the Pax and noted my major steroid reaction/concerns. He assured me that even 1/3 dose will be so much easier. I explained 1/2 dose wasn't! Anyway he agreed a big discussion is needed. I'll see him rather than my actual consultant as she has another clinic on Tuesday - seemed very switched on. I need to ask my chum if he's as dishy as he sounds!

Talking of hair. OMG. I've never really had eyebrows - never over plucked, they just never grew. I probably have 3 hairs each side I pluck once a quarter. They blooming well have grown this week. Today, I put some slap on as I was going out and saw 10s have grown. And you can see them (well I can with a magnifying mirror) and they are all over the place so they are going to have to go. That seriously is taking the mick.

My tiny little 1" wide, 3 hairs deep fringe (yes I am counting), grown recently, has changed from white to dark. My forearm hairs vary between none or a few. Leg hairs and underarm gone and stopped. You know where looks like I've had a visit to a salon with a little strip left. I'm rather proud of how tidy!

Blimey, the things we discuss. 🤭

Love AnGELa x

 

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi @Kaz11  Not confirmed yet the Regime for the filgrastim injections but all trusts seem to be different so see what yours says . I’m not even sure how often will have bloods checked either . I just thought if it’s 3 cycles Over 9 weeks would have injections 3 weekly and bloods ? I don’t like the side effects injections bring , well done for administering them yourself though . I’m a nurse and I can’t even give myself  the injection Ive trained my hubby up to do them . My underarms has stopped growing too .. yes very strange .

🌈xxxx

 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Rainbow70 

Totally get what you mean re all the meds we are on now when all I took before was ibuprofen for a sore head!

Hate the injections too.  Takes seconds but have to psyche myself up each time.  I thought they were done with after EC but maybe not....

Still have hair on my legs a bit and still on my arms fully.  Underarms it has stopped growing. Strange how if has stayed in the places where I wasn’t bothered about.

Kaz11 x

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi @Kaz11  your right will never know if diarrhoea caused by treatment or something you ate . But I suppose at least you have loperamide to help if happens again.  I was a bit constipated last time so may need to take something tomorrow as all this medication can cause constipation. I know it’s not pleasant to talk about but my word the burning sensation is not nice 🥲. I only used to take paracetamol before bus I seem to have a right collection of meds !. 

i get what you mean about the clothes , I have a little collection of clothes I wear for hospital and when all my appointments are  over I’m getting rid of them ! I found it a hard decision about not capping any more and wasn’t sure if I chose to have my hair clippered  on a day I was feeling really low. But it’s done now so will see if start to lose more now. I’m hoping to hang onto eyebrows /lashes too 🤞
Has anyone else Kept hair  to legs ?xx

your right about more of a routine having the weekly treatment and I guess until we start it we won’t know how the side effects will be . But it’s good to hear a lot say it is kinder 🤞 I asked the nurse yesterday if I would still get same supply of anti sickness /steroids and she said yes . Need to confirm filgrastim she seem to think will get 3 x 5 day course spread over 9 weeks ?? Hate those jabs , never seem to feel right until I’ve finished them. 
gelbel I hope you are feeling better after your last EC cycle 💕 and Thankyou for the skin regime cloths . Will have to look in Aldi at the hot cloths and check beauty pie out . I found a blog on hear from lady called Laura she advised Jennifer Young products . 


@Teagold sorry you have had the extra worry of waiting for your genetic results . It is reassuring your family will be screened now too and kept an eye on . Do you have a date yet for your surgery ? Sending virtual hug 💕 would you mind if i asked if it was oncologist or breast consultant who requested genetic testing . I have asked about this but I don’t seem to be getting anywhere . I’m researching nice guidelines now about it for when I go to my next oncology appt .

Sending love 🌈xx

 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Rainbow70 

Lovely to get your messages.

Was speaking to a nurse friend today and she thinks the diarrhoea sounds more likely caused by something I ate rather than the chemo but I suppose I’ll never know.  I blame everything on chemo these days (rightly so in my opinion as never had any of these issues pre BC).  Anyway called the GP surgery today to ask for a prescription for loperamide so that I have it.  So will have lactulose to get things going so to speak and loperamide to stop the flow!  Honestly you couldn’t make it up!

As I mentioned before I get a whole load of take home anti sick meds including the steroids which I’m told have anti sick properties too but not sure what the situation will be on the weekly paclitaxel.  I am kind of looking forward to the weeklies as it’s more routine and will hopefully have the psychological effect of crossing off the sessions quicker but I know what you mean re the nausea.  For me it’s after being at the hospital I feel it.  If I think of what I ate that day in the hospital it turns my stomach.  Silly as it may sound even after I’ve washed my “chemo” blouse when I look at it or go to iron it my stomach turns too.  Similar feelings about the cold cap.  Not so much when there but thinking about it makes me nauseous.  Still not sure about continuing with it.  I have some hair left but feel I look like a very poor version of my former self.  Thank goodness for the gym wig which I am now wearing daily.  I know the cold cap encourages regrowth not that there is any sign of it for me right now so starting to wonder if it’s worth it.  Certainly was harder the last time round.  If I don’t though I presume the last of my hair will fall out.  I presume the cold cap doesn’t affect anywhere else and only your head which has clearly done diddly squat for me or maybe it’s the reason I still have some.  Hoping to hang onto my eyebrows and eyelashes which are staying with me at the moment.  Nurse said I would be very unlucky to lose them too but hey I got BC the same as all the other lovely ladies on this forum and I would say that was pretty unlucky too!

Kaz11x

Rainbow70
Member

Re: February 2021 Chemo Starters

  • @Kaz11  Oh dear sorry to hear about the added side effect, your right each cycle seems to bring us different unpleasant side effects . Yes getting to hear about people’s trips to the hairdressers too .. I keep getting texts from mine to book spot . My hairdresser at the shops knows I won’t be attending. God knows when that will happen . She said said hair grows  about half inch a month !!have you decided if you will carry in with the cold cap ?

xxx🌈

Rainbow70
Member

Re: February 2021 Chemo Starters

@Kaz11 @hopeful1974  Your right half way through is a massive milestone to reach and dealing with also dealing with the psychological effects . We are all heading in the right direction and ticking the cycles off ♥️
I just need to get my head around  going for the treatment weekly. As soon as I go to the unit nausea just overwhelms me and I just can’t wait to get out. Need to get first one out of way to see what time frame is like and 🤞side effects are kinder . 

arranging walks with friends sounds good ..enjoy 💕

🌈xx

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello everyone hope you are all doing ok 💕

@hopeful1974 hope you are doing ok and welcome to this lovely support group 💕good advice regarding anti emetics , I had my 3 rd and last cycle of EC yesterday . Taking  anti emetics regular as prescribed, I didn’t cold cap this time and I don’t appear to feel as light headed today as I did when I cold capped . Still have headache it’s so hard to drink fluids when nauseous ☹️Nausea still bad but tablets are taking the edge off . Everyone does responds differently to treatments.

@Teagold @That’s good weekly paclitaxel  side effects  has been kinder for you. Yoga tips sound good , I need to get back into yoga . I have 9 weekly paclitaxel next.  

I need to read all the posts and get caught up , Im so slow at posting / typing !!

hope the sun is shining where you are , I can see it from the settee but it’s better than seeing rain outside .

sending love 🌈xx

 

hopeful1974
Member

Re: February 2021 Chemo Starters

My tips for EC are: take all the anti-nausea meds and don’t be afraid to ask to change them if they are not working. The steroids were the most effective for me at suppressing the nausea. I had to take Imodium for the diarrhoea I had after the nausea had stopped. Everyone responds differently and my neighbour had a pretty easy time on EC. It probably depends on the dosage and frequency too. Xx

Teagold
Member

Re: February 2021 Chemo Starters

Hi ladies,

Hope everyone as ok as possible today. @Linda1967 I totally know what you mean about that trippy feeling and it’s how I’ve described it to the nurse - I didn’t know whether it’s the drugs or the steroids, but it’s sort of a buzzy jangly feeling which means I can’t concentrate on anything much. This week I haven’t had to take steroids so been much better. Back on steroids next week when I get my next carboplatin so already not looking forward to that... I hope everything went as smoothly as possible on Mon and that you’re getting loads of rest.

I have to say that for the weeks I’ve had just paclitaxel I’ve been mostly ok - sleeping, eating, getting out for a walk and sometimes even a run (though just a short one and really hard going!!). My bad week was one of the double dose weeks so I think it was the carbo chaser that got me. So for those going on to paclitaxel or equivalent I really do think it’s much better compared to the side effects you describe for EC. I’ve also found it actually good going in weekly, the time does clip along and I’ve got into a rhythm now. Sadly I’m going in the other direction, with 4x fortnightly EC starting some time in May so I’m pretty apprehensive about it. But - it is what it is, will just have to try and get through it as best I can.

@hopeful1974 I found some good online classes for yoga, Pilates and meditation at Breast Cancer Haven online - free or you can make a donation of your choice. I think there are different levels for the Pilates. 

Tg xxx 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974 

Thank you for your messages.  Totally agree re the psychological effects of the halfway stage.  That’s what I have been trying to tell myself so actually on the countdown to 8 April.  Like you I feel at that time I will be at the “hump” of the hill and then I will be counting down the weekly doses on the downward slope.  Although I have to get a few sessions of radiotherapy after this the chemo was always going to be the toughest part for me so my focus is on getting through that.

Like you have also arranged some walks with friends this week.  Last week would not have been an option with my low cell days but this week I need it for both my physical and mental health too.  I find the isolation hard so am craving some social interaction.  Thankfully the wild weather of the weekend has subsided and we are due a dry spell over the next week so I can walk each day.

Take care and have a good day.

Kaz11x

hopeful1974
Member

Re: February 2021 Chemo Starters

I was also just thinking that halfway is a big psychological milestone and the time hopefully won’t drag as much if you know you are past that point and counting down to the end. Xx

hopeful1974
Member

Re: February 2021 Chemo Starters

Dear Kaz,

I can completely relate to this. I am 2.5 weeks after my last chemo and have been feeling quite a lot better for the last few days. I’ve started a daily walk with friends which has helped my mental and physical state of mind. Not overdoing it though as I’m mindful that I need to regain some weight too! My appetite is improving and I’m going with foods which  spark it. I have heard that the Paclitaxel can be much easier than the EC. Different side effects but more manageable. I hope this is the case for all of us! 

Love, Siân xxx

Kaz11
Member

Re: February 2021 Chemo Starters

Afternoon everyone 

It’s been really interesting reading all your recent posts.  I had my last EC on 18th March and can relate now to the cumulative effect.  I seem to have had an additional new side effect after each cycle and it seems to have taken an extra day each time to feel more like “me” again so it’s good to know it’s not just me.  My joyful extra last night was dreadful diarrhoea when I have had the exact opposite issue all other times.  Just took me completely by surprise then made me anxious and hey presto rubbish sleep AGAIN.  Mind you the noise of stormy winds and then a load of seagulls didn’t help - why are birds awake so early in the morning?!

Start my weekly paclitaxel on 8 April so that is my next goal as by that time I will be at the halfway stage in terms of chemo treatment time (week 9 of 18) provided my bloods ok to get treatment obviously.

Friends keep saying the time is going so fast.  It so isn’t for me and just want it over as someone else said.  I find the time in between the 3 weekly cycles drags so hoping it will feel better with the weekly doses.  Also hoping it’s not as hard on my body as the nurses say but am feeling nervous the nearer it gets about how it will affect me.

Big hugs to everyone and hope like me you are not getting people telling you about how excited they are to get their hairdresser appointments!  Lucky them having hair - if only 😢

Kaz11x

Leftygurl
Member

Re: February 2021 Chemo Starters

Hi @Linda1967 

I know exactly what you mean about the feeling that somebody has removed the part of my brain that is useful.

Had EC, pactitaxel and Zoledronic acid last Thursday and feel pretty wretched this morning, thank god I’ve got 3 days of a/l left to take before the end of March so only working Thursday this week which is a bonus seeing the improvement in the weather, just hope I’ll feel well enough to enjoy it!

At least I’ve got a date to remove my portacath from my chest as it’s been a pain since day one of installation, had neck ache after every night on the side where it loops up and down to the heart and of course the main problem being the redness then bruising over the site, tenderness, swelling to the point of hardness and the nurses have come to the conclusion that my body has rejected it. I can not wait till it’s removed, counting down the days, 15 days to go!

I think the sofa will be my best friend today lol

Hope you all have a good day whatever you’re doing 

😊🤗 xx

Gelbel
Member

Re: February 2021 Chemo Starters

@Linda1967 Good luck today. Sending you lots of positive vibes - not in a trippy way. 🤗

I'm pinching your brain etc. words to use with my onc consultant tomorrow when we discuss Dox or Pax. You have nailed what I've been trying to explain for weeks. They are duly noted in my little book.

The more I am hearing of Taxol the `happier` I'm feeling about it.

I'm just about back to me after my third and final EC. Look forward to a productive week off work - I've such a long, gentle, don't push it, to do list. And I cannot wait to meet the girls in the park this evening. Hope the weather picks up as promised as it's grey and very windy out there. #NotGoodWigWeather

Better eating regime starts today! 

I hope everyone has a good week.

Love AnGELa x

 

hopeful1974
Member

Re: February 2021 Chemo Starters

Dear Linda,

You are on the same regime as me, although I am now having a break for my surgery but will be back on a taxane plus Pertuzumab and Trastuzumab after that.

 

With then EC, I found the effects to be cumulative and on the third cycle, I had 8 days more or less in bed as I had diarrhoea after the nausea had gone (the nausea was well-controlled by the drugs by that time as we had tweaked them). I also wonder whether the G-CSF injections were to blame for some of the later symptoms as I had them for 7 days starting on day 3. I have heard from a friend who went from having a tough time on EC to Paclitaxel that the two were like night and day for her and that she only had one really bad day on the Paclitaxel. She didn’t had H&P along with it, but it has given me some hope. My nurse also said that H&P are usually more manageable in terms of side-effects. 

I would have hope that the next ones will be easier and if they are not bearable, then the oncologists are there to adjust the doses. 

I hope that helps in some way. I have just had to have a break by having my surgery first as I was losing too much weight and I am now rebuilding my strength and trying to eat as much as possible before my op. 

I am also looking for an online Pilates class to start to try and work on my core strength as I see this as an important thing to do when I have spent so much home horizontal in bed!

 

Wishing you all the best for today. It will be good psychologically to know that this is the last one.

 

Love, Siân xxx

LottieLaing
Member

Re: February 2021 Chemo Starters

Hi Linda ... I’m sorry you’re having a strange time on EC I certainly agree it messes with your head at times. 
I see you are doing weekly chemo for the 3? Is this an option as I’m starting it on 30 th April but 3 cycles 3 weekly ... I didn’t know you could get it weekly. 
Hope tomorrow’s cycle is a bit easier on you.  Xxx

Linda1967
Member

Re: February 2021 Chemo Starters

Hello Ladies.

I have not posted in a while. I read your messages most days. 
I have my third and final EC tomorrow. I have found it really hard in ways I didn’t expect. Nausea is bearable as long as I keep food bland but the feeling that someone has removed the part of my brain that is useful and I have been sent on what I imagine a bad 1960’s psychedelic drug trio would feel like is really horrible. I feel like the real world is within sight but can’t quite get there. It lasts for about four days. Don’t sleep at nights as body is agitated and can’t settle but mind is so mushy I can’t focus to watch TV so listen to stories and meditations constantly . The first three days after chemo mind is as high as a kite ... had a steroid reduction and slightly better last time. I can’t wait to be done with this. 
Next for me will be 12 weeks of taxol, herceptin and pertuzanab. The nurse said most people find it more bearable... I hope so.

My thoughts are with all of you. One day at a time.

x

hopeful1974
Member

Re: February 2021 Chemo Starters

Thanks to you all re the sleep tips. I have tried most things including the Calm app, which is wonderful but still not enough to send me off! I have a lavender spray so will definitely give that a go. I am feeling a lot better today actually, and although I did have to take the sleeping tablets at night, I had a full night’s sleep and have had so much more energy today. My appetite is back, so I know it was the antidepressants which were giving me the nausea. Not what I need on top of everything else! 

Can I just say that you are a lovely group of ladies and that I look forward to continuing my journey with you. I will have 3 more chemos after my surgery, plus the Herceptin, although I have heard that that is not as harsh usually as the chemo. 

Hugs to you all today. 

Siân x

Gelbel
Member

Re: February 2021 Chemo Starters

Oh @Teagold what a unwelcome result. As you say, at least you and your girls know and the professionals will be all over it. And science is advancing  all the time.

As for walking out with the port in. I thought I was going some putting a glass of pineapple juice in the microwave this am. Thankfully I didn't turn it on. I nearly drank the raw egg I was going to poach in the microwave though! 🤭

As @Kaz11 has said, at the risk of sounding blazé, surgery is so much easier than chemo. I know a double will throw up additional practical problems. You will cope. I'm not sure if the recovery will be longer. Get gallons of cream for massaging your scars - I used Garnier intensive 7 day shea hand cream by mistake after a few weeks. I've been using it ever since. Oh boy, it's good: sinks in straight away so no material stains. Being flippant you won't have to double the massage time - do both at the same time. 👐 All part of my bed routine now.

Talking of which, @hopeful1974. I agree with lavender spray. Creighton's the UK hair and beauty brand do a lovely one. It helped a colleague who was struggling to sleep in lockdown 1. Usual advice on no devices before bed. Do you have a smart speaker? I've used a mindfulness skill to listen to the sea or white noise when I've struggled. 

Google pressure points to help you sleep. I will rub away at the web between by thumb and finger when I've a headache. It works so might be worth a try.

I'm off to Aldi this evening - will see if they have any frozen pineapple. Ooooh, I could just eat a pineapple yoghurt. 

I hope you all have the weekends you wish yourselves. 🤗

Love AnGELa x

Kaz11
Member

Re: February 2021 Chemo Starters

Morning ladies 

@hopeful1974 I am sorry to hear about your anxiety and sleep issues.  I too am having problems with sleep which I never had in the past.  Used to sleep like a baby and wake up after 8 hours with covers barely having moved.  Those days are long gone.  I seem to now sleep in 2 hour bursts.  Trying to limit the fluid intake in the evening as that was getting me up too.  Think menopausal symptoms have a lot to do with it as well. Am just trying to accept this is the way it is now but not good when you don’t feel rested as the treatment is tiring anyway.  One of the nurses did give me some hope that I can take something herbal down the line to help with menopause but it will depend on what the tablets are I have to take going forward eg tamoxifen.

@Teagold that’s massive getting the results of your gene test.  I have not had to go through this but presume because I don’t have children it stops with me so to speak.  I had a single mastectomy in December and found the recovery ok but totally understand a double is completely different.  I have personally found the chemo much harder to deal with than the surgery.   Sending you massive hugs today and positive thoughts.

On the skincare side I had a chat with a nurse yesterday and she mentioned a website called the-c-list.com.  It was created by a lady who had BC together with a make up artist.  Loads of products recommended for people going through treatment with specific skin needs so am going to take a look.

Kaz11x

Teagold
Member

Re: February 2021 Chemo Starters

Morning ladies,

@ktruffin thanks for those tips from Penny B that was really helpful. I’m trying the frozen pineapple chunk thing too - my lovely mum god bless her brought round a whole pineapple and chopped it up for my freezer (I wouldn’t have faffed around doing it myself) but it is really refreshing and helps the grotty mouth taste.

@hopeful1974 sorry to hear about the sleep probs and anxiety, I haven’t had this as badly though I’m waking up much earlier than I normally do (more to do with churned up tum) - I have a couple of lovely pillow sprays that are helping to calm me down at night but that’s all I can offer up there. I hope you manage ok over weekend without the anti-deps and that the gp can give you other options.

So I got my genetic tests back and lo and behold I do have a gene mutation - not BRCA 1/2 but another one (palb2??) which means it’s double mastectomy for me when surgery comes and also I have to start letting some family members know to get tested. Also my girls will have to be tested and then potentially screened etc from early age - this is the hardest bit thinking that it could be a risk to them, but given that it is what it is thank god we know. I feel oddly quite calm about it and have gone into practical mode re the surgery bit because having a double I’m assuming is a much bigger deal with longer recovery and I’ll need more help etc etc. But I’m sure once the calm head wears off I’m going to have a few major “snotty mess” days.

Oh, and after the drama of the phone call with the genetic doc I managed to walk out of chemo ward and get the train home without having my port needle removed. I’d just got through the door when nurse called to say “erm - have you still got your needle in?” - so back up to hospital for me and not home until 8pm. All in all - not my most fun day ever but managed to see the semi-funny side of having been such an idiot as to see stroll out with a needle in my chest!! 
Hope everyone else doing ok - at least we might have some brighter weather coming up next week.

Tg xxx

 

LottieLaing
Member

Re: February 2021 Chemo Starters

Dear @hopeful1974 ... I’ve just read your thread... gosh you’ve had a hard two weeks after your EC 😢... it’s been a week yesterday after my last one and round 2 was harder for me too I think. More 🤢more weak and more aches and pains in lower back and legs but think that could be the injections.. they stop today. 
I too don’t sleep great either as Mind goes into overdrive in middle of the night, but I downloaded the Calm app and it has seriously made a difference to me. You could maybe try it. 
As for antidepressants... yes they will make you feel sick to begin with until they get into your system.. they can take up to two weeks to work. 
I hope you are feeling better today. I’m going to go out walking with hubby and dogs today as I’ve not been out apart from garden since last chemo. 
Have a good weekend. Sending hugs.  

Linda xx

hopeful1974
Member

Re: February 2021 Chemo Starters

Dear Sam,

Keep me posted as to whether you’ll have your op in the middle of your chemo. I’ll still be having three more chemos and Herceptin afterwards so will stay on this thread to see how others are getting on. 

Re sleep, if anyone has any tips, I’d be grateful too as mine has been difficult. I never used to struggle with sleep and I think it’s not uncommon for it to happen on chemo. I was prescribed some sleeping tablets which do help and I’m reluctantly taking them. I never used to take any tablets for anything prior to starting chemo, but a good night’s sleep is pretty important to me and I then have more energy in the day. I managed a walk with a friend yesterday and was downstairs for most of the day rather than in bed, so I feel that is progress. It is two weeks since I had my last EC. I think I would have recovered sooner but I was started on some antidepressants by my GP and they gave me bad nausea! Not what I needed when I am trying to build myself back up for surgery. The GP has suggested I stop those for this weekend to pinpoint whether they are the culprit. I’m pretty sure they are. I may be trying some different ones as of next week. It is to reduce my anxiety long-term and I’m hoping they may also help my sleep eventually. 

Siân x

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

Thanks so much for the pointers re the skincare which are good to know.  Want to try and stop the lines steadily creeping down my chin and side of mouth too.  Chemo is the gift which just keeps on giving doesn’t it!  Have heard of Beauty Pie too as a friend uses them so will look that up too.

Congrats re the new car - that will give you a real boost.

As for the milk accident as you say couldn’t have been much worse when our sense of smell is so off the scale.  I think mine is getting more sensitive as the time goes on!

Thanks again

Kaz11 x

ktruffin
Member

Re: February 2021 Chemo Starters

Gelbel - what is wrong with a bloody good cry!  You need to let go and you are clearly shattered and its making you emotional plus remember all this chemo is sending us menopausal / hormonal so its to be expected.

A nurse mate of mine told me to go for bitter and spicy flavours to deal with the yeuch mouth. It really works. Warm water with loads of lemon or lime - especially first thing when you wake up. Fennel, aniseed, licquorice, rocket, radish, radicchio, chilli. Go oriental or mexican - can work better than bland flavours.

Here is advice from Penny Brohn on foods for different conditions.......

ktruffin_0-1616758678437.jpeg

 

TOP TIPS FOR HELPING TO SUPPORT SYMPTOM RELIEF DURING TREATMENT

 

FATIGUE AND LOW MOOD

  • Keep portions of food relatively small
  • ‘mindful’ snacks may be helpful but try to avoid ‘ grazing’
  • Keep blood sugar levels balanced with regular protein and some fat.  For example, eating an apple with a small handful of nuts could prove helpful.
  • Regular water intake and try to keep caffeine intake to the morning
  • Plan and ask for help
  • Check levels for B12, iron, vitamin D3 and magnesium

 

REDUCED APPETITE / CHEMOTHERAPY

  • Remember portions and utensils can be the difference between feasibility and inability – don’t overwhelm.
  • Consider zinc levels – red meat, pumpkin, tinned fish.
  • Be perceptive to herbs and spices and enjoy. Culinary herbs are there to help digestion. Try paprika or a little chilli to enhance appetite and support digestive enzymes
  • Use of slow cooker – cooking when convenient and development of aroma
  • Use lemon as a condiment
  • Make every meal time an occasion but decline the food if the taste doesn’t feel right – this prevents negative association during chemo.
  • Make sure flavours are varied and consider a range of dressings which could give nutritional benefit
  • Consider the use of enticing utensils and crockery / plate size

 

NAUSEA

  • Helpful herbs / herbal teas – ginger, mint, fennel
  • Avoid overloading the digestive system at meal times
  • Keep food to a comfortable temperature and not too dominant to any one taste
  • Check protein intake is good
  • Sip water over a period of time and coconut water will help hydration
  • Consider fasting (or restricted eating) before treatment – initially consider a 13hr fasting window
  • Fresh air and nature does wonders!
  • Keep mouth clean – try coconut fat (1tsp) swilled in mouth and spit.
  • Try sea bands for the wrist
  • 3 changing breaths (try in through nose for 4secs, hold for 5, out through mouth for 😎

 

TASTE

  • Check zinc levels
  • Explore distinctive flavours such as pesto, olives, capers, tamari, black olive paste (tapenade), Worcester sauce, black pepper
  • Use of fat can often bring out the flavour of food – eg, slow/low temperature onions in olive or coconut fat, (with a bay leaf and some rosemary)
  • Increase use of sour / fermented / bitter tastes to support digestion
  • Keep temperature of food comfortable to palate.
  • Salt in cooking can enhance the flavours and sour can help to distinguish them
  • Some people find using bamboo cutlery rather than metal helpful

 

SORE MOUTH AND ULCERS / DRY MOUTH

  • Try zinc lozenges and increase zinc in diet – prawns, chickpeas, canned fish, eggs, red meat
  • Increase vit C – perhaps Baobab supplement (Baobab is a fruit from tree)
  • Essential fatty acids – fish oils will be anti-inflammatory
  • Reduce dry food and increase moist
  • Use of lemon and in the  mouth  can increase saliva, even by being mindful of the effect (imagine some lemon in the mouth and often saliva occurs as a result)
  • Fresh pineapple can either antagonise a sore mouth or prove extremely helpful.- individual
  • Try PerioBrite probiotic lozenge
  • Coconut fat swill – as above

 

CONSTIPATION

  • Hot water with lemon on waking
  • Position at toilet to be more ‘crouched’ – try a small stool to raise the leg position.
  • Keep hydrated – coconut water can be helpful.
  • Try liquorice tea, molasses, cider vinegar, linseeds, chia seeds, kiwi, pears, prunes, psyllium husks
  • Prune juice is high in sorbitol which can act as laxative (100ml?)
  • Herbs – fennel and ginger may prove helpful  or coffee after breakfast
  • Physical movement

 

LOOSE STOOLS

  • The use of fennel or ginger can be adaptogenic, so could be used for either constipation or loose stools.
  • Keep hydrated – use of coconut water as well as water
  • Check that the loose stools are not due to constipation leakage
  • Check that the loose stools are not due to too high supplement of vitamin C or magnesium
  • Helpful foods – eggs, rice, oats, bananas, chia,
  • Keep portions small and with protein
  • Chamomile, ginger and fennel teas could prove helpful
  • Reduce too much insoluble fibre such as wheat, potatoes, cauliflower, nuts
  • Reduce triggers such as caffeine and greasy food
  • Be aware that sweeteners – even if natural such as xylitol or sorbitol can act as laxatives

 

DIGESTIVE UPSETS OR INDIGESTION

  • Try probiotics – check oncologist
  • Incorporate fermented foods – kefir, yoghurt, kimchi etc
  • Gripe water
  • Indigestion – increase use of dill herb /sprinkle onto food. Fresh dill will dry freeze.
  • Ginger – lemon tea / mint tea
  • Cider vinegar and warm water prior to a meal – try half tsp. to start
  • Use of slippery elm powder – as a drink or sprinkled on food
  • Nibble dates – alkalising – figs can also be helpful

 

GENERAL CONSIDERATIONS WHICH MAY SUPPORT BALANCE – WHOLISTIC APPROACH

  • You can make a start now - ‘Start where you are, use what you’ve got and do what you can’ (Arthur Ash)
  • You are an individual – unique, what works for you may not for another and vice-versa
  • Supporters – Be aware of ‘over whelming’ considered supportive food. Remember portion and crockery can be the difference between ‘inability’ and ‘feasibility’.
  • Try to sit at table, set for an occasion
  • Work on taking the ‘fear’ out of food – the consequences. Explore these avenues
  • Hydrate gently
  • Remember, sometimes it is not the food that is the problem – more, the emphasis on the plate. Sometimes food is inappropriate rather than GOOD or BAD.
  • Recommendations to help a side effect are often temporary.
  • Explore the many benefits of herbs and spices – dried, fresh, frozen, pastes
  • There may be no ‘quick fix’ but feeling comfortable with a proactive idea will prove immediately helpful
  • Try to avoid grazing in search of what you want.
  • Remember texture of food is important to support comfort.
  • Have faith in your intuition
  • The digestive system is the most amazing aspect to the body – but the body appreciates time and focus to do it to the best of its ability.

……………………..

Chinese proverb.

“Just because your path is different – it doesn’t mean you’re lost.”

 

 

 

 

Teagold
Member

Re: February 2021 Chemo Starters

@Gelbel I’ll refrain from quipping about crying over spilt milk... the smell of spilt milk at the best of times gets me so definitely not what you need right now!! Good news about the car.

@CrazyCatLady thanks so much for reassuring words about the blood tests - you’re so right, I immediately go into overthinking mode. I also have to have a halfway scan in a few weeks and trying v hard not to think about that - I feel I can cope with my treatment routine but anything out of the ordinary stresses me now. Fingers crossed. Really sorry to hear you had a rough couple of weeks again, and amazing that you still managed to WFH for some of it. Hope you’re feeling better now? For what it’s worth I can’t stomach the ginger and lemon tea but I got some “spiced ginger” which is really lovely and did help perk me up this week.

@Gelbelyour beauty products sound way more sophisticated than mine, I’ve moved from Olay to CeraVe for hands and face and just find it really soothing, but given the close up photos my 11-year-old took of me last night on her phone, it is definitely not making me looking any younger...

Right, I’m strapped in the chair waiting for bloods so I’m going to put time to good use looking at gym n swim wigs...

Tg xxx 

Gelbel
Member

Re: February 2021 Chemo Starters

Good news about the gym wig @Kaz11 They are great aren't they? I'm thinking about a blue one but I need to stop the spending as I've been a little OTT recently.

Re face creams. A few years ago I decided I needed to do something about the lines and went down the Boots No7 route. The No7 LABORATORIES LINE CORRECTING Booster Serum and blue serum really worked for my face and the booster and pink one for my chest. Can't say the creams did anything. For about 9 months I've been using Beauty Pie, the eye cream is outstanding.

I've noticed my lip lines are coming back recently so I've gone back to using the No7 LABORATORIES LINE CORRECTING Booster Serum at night, which seems to help. It certainly stopped a side chin line that was creeping back in its tracks.

Beauty Pie is a subscription service and you have to do 3 months minimum. If anyone does want a try I can do the necessary so your first month is free. I've nothing to do with them but can't praise the eye cream enough, the Vitamin C body brightening cream has cured my bubbly back of arms and Super Healthy Skin Body Wash is very hydrating without being too rich. Both of those are serum-like. Bought hubby a foot cream and it's made a difference to his awful feet!

For 6 monthsish I've been using a hot cloth cleanser system. Aldi! With a Beauty Pie cloth. Oh my. My nose finally has very few blocked pores. When I met my pal at the services the other week, she commented on how clear(er) my skin looked. It's not all thanks to steroids!

Whoop, whoop. The phone call I've been waiting for. Tuesday is new car day! Which makes up for the words we've had in this house this morning... Anyone else's other half decides to look at your new shoes to help you decide which to keep with a glass of milk in his hand.? Held dangled between his thumb and forefinger?

Then drops it?

Everywhere?

And I mean everywhere.

Milk of all things - with my taste and smell. 😠

 




 

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Good morning everyone

Well, after my last post I ended up having a bit of a crash....ended up on sofa for 3 days not able to do much of anything.  But, much better now and getting ready for next weeks' onco appointment, PICC line flush and bloods and Cycle 3 next Thursday.  Managed to actually do some WFH on week 2 and week 3 after chemo, so better than last time.  Does help keep my brain busy....and I hate housework at the best of times, so any excuse not to have to do it (just the washing/ironing and a bit of light worktop cleaning....then get hubster or daughter to do the other bits).

Have a horrible feeling I won't get away without the filgrastim injections for next cycle....starting to get very mild numbness on the ends of my index finger and thumb but just on my left hand (which also is the side where I have a ganglion cyct on my wrist...so could be that??)  Something else to mention to my onco, along with my (extensive) list of other issues I've had in first 2 cycles lol!  Think for me the crushing tireness is the worst - tried Nytol but no joy really, but may just have to keep on with them.

@Gelbel oh so sorry you had a rough time after your last cycle - it's pants isn't it 😞  And glad to hear you're feeling a bit better after having your 'snotty days' - we all get them (took mine out on a yorkshire pudding tray lol....it got flattened when I was in a crying rage with lots of stomping and swearing!).  Also hope you're feeling better too @Teagold and got some more helpful councelling sorted out.

Oh and looks like we have another thing in common @Gelbel - my hubby is ALSO a professional driver, but doesn't do much these days as he's gone over to 'the other side' in management.  He's now Service Delivery Manager for our local public transport organisation (no. 7 in the management heirarchy no less)

@Teagold I had genetic testing done pretty much straight away as first in family and also bilateral so they said this was quite uncommon.  Said my results would take 4-6 weeks but they'd try to get them done as soon as possible.  So when I got a call after just 2 weeks I too had a bit of a panic (we always think it's bad news now don't we!)....but all tests were negative!!  So relieved, but more so for my 23yr old daughter - did not want her to have the stress of going through testing too.  So fingers crossed it'll be good news today xx  Also hope all goes well today and good luck with having your port out xx

I'm with you too on the no appetite in first week....feels like I'm force feeding myself.  Also stick to really bland food like porridge or toast but have increased my museli intake to get a bit more fibre in my diet to keep the chemo trots at bay (seems to have worked for last cycle anyway).  Fortunately, other than a couple of days after chemo, I can still have my morning cuppa....god help anyone if I miss my caffeine dose lol!  Have tried the ginger and lemon tea, but I'm not really much of a tea drinker....but it was 'tolerable' just 🙂  And yes to ginger biscuits....getting through a packet every couple of days in first week!

@Rainbow70 and @Leftygurl well done on braving that shave....it's horrid at the time, but it does get better.  For me now it just feels 'normal' and loads of lovely scarves, turbans and hats always around to keep your bare head warm.  Glad to hear Alice that you finally got a PICC line in....mine's been brilliant and sooooo much easier for everything.

@hopeful1974 sounds like I may be following a similar path to you as I was told at the beginning of chemo they may stop it halfway through to get my surgery done too and then back to finish off the remaining cycles.  So good luck for your surgery date....the weeks will fly by I'm sure xx

Best wishes to you all and keep smiling xx

Love

Sam xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Teagold 

That’s good to know it’s not just me re the hospital food.  There’s nothing wrong with it as you say and the staff serving it are lovely- it’s just guilty re association I think!

Thanks for the info re the cold cap will give it some serious thought.

Big hugs for your treatment today.

Kaz11x

Teagold
Member

Re: February 2021 Chemo Starters

@Gelbel I really loved your rant about people’s sense of entitlement. I actually confronted three complete strangers the other day for having one of those pavement-blocking conversations which made everyone else have to walk out in the road to pass them whilst keeping some distance - politely suggested that if they just moved to one side of the pavement there was room for everyone but they got very defensive and rude. Nice.

@Kaz11 yes yes yes re hospital food - I feel bad for saying it because it’s not bad food and the people serving it are absolutely lovely but I am coming to associate the taste with having treatment and the thought of it increasingly makes me feel queasy. Also the smell of the place. Re cold cap, I don’t know if this helps at all, but I’ve been on weekly paclitaxel now for six weeks and have cold-capped - although I’m definitely shedding and hair has thinned quite a bit (I had v thick hair which seemed to be always shedding a bit anyway tbh), I still have enough hair for it not to be so noticeable to the outside world. I’m getting away with a baseball cap when I go out (which I’m not doing much but just dropping kids at school etc). The thinning is right on top where the cap hasn’t fitted so well, so I’m now stuffing it between the hard and soft bits to push it down. The cap is definitely feeling colder each week as there’s less hair to cushion my poor scalp, but I plan to keep going for as long as I can/it feels worth it. 
Ok time to get the hospital bag packed and head on off for my next dose. Good luck to anyone having treatments today and hope everyone else has a relaxing day whatever the weather.

tg xx 

Kaz11
Member

Re: February 2021 Chemo Starters

Ps my gym wig arrived last weekend and I love it!  Has given me the confidence to go walking without wearing a hat and felt normal!  Ordered Tuesday night and arrived Saturday.

Kaz11x

Kaz11
Member

Re: February 2021 Chemo Starters

Also meant to ask has anyone been given any recommendations for facial skincare products to use during chemo?  I stick to fragrance free moisturiser for my body but have been using normal creams on my face.  Noticed however that more deeper lines developing around my mouth/chin which were not there a few weeks ago - worried I am going to look about 80 by the time this is done!  Looked on a couple of websites but can’t see anything particular.  One said to cleanse, tone and moisturise - tell me something I didn’t know!  A company called Highborn coming up on my Facebook feed.  The founder had BC herself.

Any recommendations welcome.

Thank you.

Kaz11x

Gelbel
Member

Re: February 2021 Chemo Starters

We crossed there @Kaz11 I'm with you on wetsuits, snorkels, blankets etc etc etc. Bit of sun in London and that's it we're all bathed in it right across the UK. Looks like there is snow in the air in Leeds this morning. It's freezing cold and blowing a gale. 

In England, shielding ends 1 April. I think that's the date. Were being told to go careful. Makes me laugh how the arms of a clock can determine the advice. The volunteering support is there if we want it - certainly from my council. We've always avoided peak times to go about our business so for us it'll be BAU if/when we do out. I shop early, we go for late lunches or late afternoon drinks etc.

Hubby assures me my breath doesn't smell. I actually believe him as I know when the little tinker's lying.

Love AnGELa x 

 

Gelbel
Member

Re: February 2021 Chemo Starters

Thank you ladies. I did feel better in the evening after a little moan to my pals on our usual Thursday video call. 

@Teagold your 1st para sums it up totally. If we don't have rotten weather I've the offer of a few bear hugs after the weekend. Mind you it's meant to pick up as we're allowed that bit more freedom. I've had some tears over this whole BC malarkey but not a massive uncontrollable cry. Usually I'm a cryer out of frustration but I know there is that big one waiting to come out. It's thanks to lockdown. So woe betide anyone I see jeopardising the roadmap. People have such a sense of entitlement these days and never think of the impact of their actions on others. And these are the ones who are first to spout be nice and other buzzwords they wouldn't know the meaning of if it bit them on the bum!

Ah, that's better.

And it's better because I've just had a hot x bun that tasted like... only a blooming hot x bun! Must add some Philly to the shopping list - gorgeous on them, try it.

Shower and cricket beckons - not necessarily in that order. And an extra serving of rugby tonight. Things are looking up. 

Thanks again everyone. It's times like this when this forum comes into its own. One of my friends asked if I'd posted on here about how I was feeling. She gets it. 

Loads of hugs and positive vibes for few side effects and smooth treatments if you're having/had them. 🤗

And great news about the picc @Leftygurl. Better late then never eh?

Love AnGELa x 

Kaz11
Member

Re: February 2021 Chemo Starters

Morning everyone 

Totally empathise with the “snotty mess” moments this week.  This has been my low cell post chemo week so have had zero energy and spent a lot of time on the sofa.  On the plus side my last injection is today - yay!

I too have found things hard and the days very long.  In non covid times I would have had friends popping in and out of my house like yoyos offering support and much needed hugs but it is not an option right now which makes what we are all going through even harder it’s so unfair.  As I said to someone I am dealing with a triple whammy - breast cancer, menopause and covid, it’s all awful.  Even when restrictions eventually start to lift up here in Scotland the indications are that I will still need to shield until my treatment is over and right now that still feels like an eternity away.  I may be able to meet someone else outside but going to a cafe or restaurant will be a no no as it will increase my exposure to infection.  However the nurses did say the rules are changing all the time in shielding so I will need to ask each time I go.  However I find the isolation brutal and if I hear one more time about meeting someone in my garden I will scream as it’s still way too cold here.  I appreciate people are trying to help but some suggestions are ridiculous right now.  Rain yesterday so I would have required a wetsuit to sit outside never mind a million blankets.

Totally agree with the taste in my mouth.  Can’t even describe it just permanently rotten.  Maybe just as well I can’t have close contact with my friends as I can only imagine that my breath must be rank too!

Have a decision to make about the cold cap before next cycle in 2 weeks which will be first weekly one.  Some hair still hanging on but I found the cold cap harder the last time as less for it to make contact with.  It actually makes me feel nauseous thinking about it so will try and put off thinking about it until the day.  Also does anyone else feel sick thinking about anything you eat in the hospital.  I get my lunch there on chemo days and anytime I think about the food after I could puke.  Must be how I associate everything connected to chemo/hospital.

Big hugs to everyone.  As someone has said to me we should not be too hard on ourselves.  We are dealing with a massive amount on our plates at the moment especially with covid/lockdown thrown into the mix.

Kaz11x

Teagold
Member

Re: February 2021 Chemo Starters

sorry meant to add - @Leftygurl so pleased to hear about the picc line and that you can now get the port removed, you must feel so relieved. Xx 

Teagold
Member

Re: February 2021 Chemo Starters

@Gelbel  - sending you a massive hug. I’ve had two major “snotty mess” moments this week so I’m right with you. I’ve been reading a couple of books this week by people who’ve had breast cancer (actually really helpful, I wouldn’t have been up for it before now though) and they talk a lot about how much it helped to see friends, have friends round, go to friends’ houses, get big hugs from loads of people etc and it really hit me how much lockdown is affecting this whole thing. Ok I know we can all meet up with people for a walk but it ain’t the same as having someone give you a massive hug while you have a little (or even a big) cry on the sofa. 
And everything you said about the nausea - yes yes yes. Nothing I love more than a nice cup of tea and couldn’t stomach it for a whole week. Never mind all the people who think we should be eating nothing but organic veg - the only thing I’ve got the vaguest appetite for is cheesy pasta so if fish finger sandwiches are your thing then you just have to go for it. (And if one more person mentions turmeric to me I think I might scream.) The mouth taste thing was getting me down this week too - for me it’s less like sucking pennies more like chewing electrical wires or having a burnt tongue. Either way, horrible. 
Anyway, I hope yesterday was better for you and that you are able to see your friend at the weekend. 
And big hug to anyone having treatment today - I’m off for #6. Last week felt so rotten convinced they wouldn’t give it to me, this week feeling much better so Sod’s law my bloods will have plummeted!! 
Tg xxx 

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi Gelbel,

I can completely identify. My third EC laid me low for the whole two weeks and I’m still not right. I’ve been mainly in bed managing the odd short walk outside and then collapsing into bed again. My nighttime sleep has been poor as I am dozy most of the time during the day. I am taking sleeping pills and just started on antidepressants, which take a couple of weeks to kick in. 

My treatment plan has been changed as a result and I will now have my surgery in the next four weeks to give me a break from the chemo. 

Sending hugs to all who are struggling. Xxx

Leftygurl
Member

Re: February 2021 Chemo Starters

Oh @Gelbel @I really feel for you, the lows are so low aren’t they, is there any counselling services offered from your hospital? Talking does help, I’m lucky I’ve got a hubbie and a son to talk to and hug but I know how you feel about when we are able to hugging again, I’m just going to be crying all the time I think, must remember to wear waterproof mascara, mind you that’s if I’ve got any lashes left by then! 😅 

On Tuesday my team had come to the conclusion that the cause of my problems with my portacath are that my body is rejecting it so they asked whether I would like them to try a picc line on my non-surgery side (I’ve got a plate on my collarbone that side, so it wasn’t apparently doable) anyway so they tried and it was a complete success! No problem at all, I couldn’t believe it, to think I’ve had to go through all these problems unnecessarily! But of course hindsight is a powerful thing but no good in this case, at least I have proved it can be done and somebody else won’t have to go through what I’ve been through, hopefully. 
This morning had my 3rd treatment Zoledronic acid & EC and all was fine. Not feeling to bad yet but like you  @Rainbow70 I didn’t cold cap this time so I’m expecting my last half an inch to come out, oh well it’s like someone on here (sorry I’ve forgotten) said, old me old hair, new me new hair! 
Hope everyone is doing ok, I’m hoping to be too when I get this damn portacath removed on the 12th, and not a moment too soon 😊 

Alice xxxxxx

Gelbel
Member

Re: February 2021 Chemo Starters

Jeez what a horrible day yesterday... OK in the AM, did a bit of work. OK it took me a while to edit some copy then BAM💣. About 15:00 mega whoozy, felt a bit nauseous and I could do no more than lie on the sofa for a couple of hours. I did perk up a bit about 17:00 but had to hold on to everything when I moved around as I felt so unsafe. 

Ended up going to bed at 20:00. Slept most of the night. Better today though still blurghish all round. I am going to look like a ginger biscuit from the ones I am having to eat every hour. I can't stand that tummy feeling and the blooming taste in my mouth. It's not so much metallic as a sort of just gone off top of the milk. My afternoon cuppa is no more. 😢 A stodgy white bread sarnie does help (fish finger one went down a treat for tea) but I'm sure the carbs aren't really.

I'm doing a bit of work this morning to pass the time but laying at 45 degrees to stop the whooziness. Mad I know but I can't lie around all day - it's doing my head in this time.

Sorry for moaning - felt so on top of this cycle on Tuesday. 

I'm also getting very weepy at the thought of seeing my family... in June with any luck. I've only had short video calls with them since diagnosis in December and realise I need a damn good cry with my mum. TBH I can't really be doing with her (sorry, not sorry) and she's got dementia, just coping with it at home, made worse by lockdown, but it's a long time since I saw her/them in October. I think one slight touch from any of them and I am going to 'break' in some way or another. Might have to have one of my nurse chums over at the weekend for a chuffing good bawl - rule of 6, their bi-weekly flow tests and all that.

Aghhhh - I'm sat here in a snotty mess.

Teagold
Member

Re: February 2021 Chemo Starters

Hi @LottieLaing 

not sure if this helps but I was also given domperidone (in my mind keep calling it Dom Perignon - if only...) and told take 30/60 mins before eating I think up to 3 times a day. First few weeks I toughed it out with no anti sickness meds thinking I only needed to take it if and when I felt really sick, then after last week’s crash I’ve started this weekend taking two a day one before lunch and one before dinner. Does seem to have taken the edge of nausea and I would say each day this week has been a bit better than the day before, it didn’t kick in immediately like you say. I’m eating more which I hope means my weight is back up this week when I go in as I got a little ticking off from the dietitian last week. Somewhat ironic for someone like me who has spent most of my life trying to lose or manage my weight... Anyway the big message I took away was that it’s to be taken to prevent nausea from taking hold and that if that doesn’t work there are other things to try. 

@Gelbel thank you lovely for the shampoo tip, I will give that a try. I can definitely see now that it is the top of my head where it’s all shedding. 

I just got my appointment through for results of my genetic testing - this Friday. Starting to freak a bit as this is a lot sooner than I thought, only two weeks after they took the bloods. In typical overthinking fashion I’ve convinced myself this means they must have found all sorts of horrible mutations. Is anyone else going through, or has gone through, gene testing? I can’t think how I’m going to tell members of my family if it comes back positive and of course what that will mean for my girls. I guess just another piece of this rollercoaster to get through.

Hope everyone is ok - spring weather this week has definitely been a welcome boost.

tg xxx 

LottieLaing
Member

Re: February 2021 Chemo Starters

@Rainbow70 .... ah so you have two lots of sickness meds? I just feel the domperidone takes at least 48 hours to stop feeling nauseous but perhaps that is normal. I spoke to nurse today and she is going to change meds to the one beginning with M that you have.Hope you’ve had a nice day everyone xx

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi @Gelbel thanks will take a look at Olaplex and may order some . That’s good you have some new hair growth . I’m expecting to lose more after 2 rd cycle EC on Monday. Currently have a number 3. 

@LottieLaing sorry to hear you have suffered more with sickness after 2nd cycle . I was quite bad with sickness first cycle of EC so i was prescribed Aprepitant for 3 days for 2nd cycle , had no sickness but nausea still bad first few days and seemed to feel more light headed .  I have ondansetron and metoclopramide prescribed. Tend to take regular Ondansetron but if nausea bad again next week will take Meeoxlopramide regular also. As @Gelbel  mentioned ginger biscuits are good to nibble on . I also wear the wrist bands but not sure if they help !

Sending love 🌈xx

Gelbel
Member

Re: February 2021 Chemo Starters

@LottieLaing I've taken them this cycle (3rd EC) whether I need them or not as I reduced the steroids on days 2-4. I'm on Metoclopramide. My team told me to do this when I said I wanted to have less steroids as I'm so reactive to them. I also have indigestion tablets this time - one every 24 hours, 1 hour before I eat.

On my other 2 cycles I took the anti nausea tablets as needed - probably one a morning on days 4 to 7. It was suggested I take them as directed, ie 1 every 8 hour. However I didn't as I do have cast iron guts. 

If you still feel sick as 8hrly is not enough, I'd call your team as they may suggest a different brand. Or try a ginger nut - they do take the edge off. 

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @Rainbow70 been using Olaplex No.4 Bond Maintenance Shampoo And No.5 Bond Maintenance Conditioner once a week since September, through diagnosis in December, 1st EC 6 Feb and hair started coming out 2 weeks later. Still using the shampoo on my bit of fluff that's growing. Which didn't half feel strange blowing in the breeze of an open window when I took the towel off my head after I washed it on Sunday! 🌬 🤣

Hope that helps. x

LottieLaing
Member

Re: February 2021 Chemo Starters

@Rainbow70 .... I had my 2nd cycle of EC on Friday... 🤢 lasted longer this time and started sooner... but feeling better today and only had one sickness tablet. Do you ladies take them whether you feel sick or not? I’m on Domperidone and it’s 8 hrs between them and feel I need something before the 8 hrs on the bad days? X

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi everyone hope you are all doing ok 💕

@Gelbel Have you started using the Olaplex ? I ended up having my hair clippered no3. I have my 3rd cycle of EC on Monday so I’m expecting to lose the rest as won’t be cold capping any more. Which Number Olaplex did you order please ?

sending love to all 🌈xx