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August 2020: starting chemo.

Amy1988
Member

Re: August 2020: starting chemo.

Hi everyone. My taste buds are really bad now, nearly everything that I eat has like a sweet sickly taste to it. It's weird, because I've heard a lot of people mention 'metallic taste' but that's not what I'm experiencing. I'm getting a bit worried because its putting me off eating and I my consultant said she didn't want me to lose weight. Does it have any tips or advice please? 

Maire
Member

Re: August 2020: starting chemo.

Hi All,

Me again.

Had my 4th Chemo yesterday, my first Docetaxel. I was pumped with piriton and hydrocortisone beforehand as I’d had a reaction when I had this drug last time (I had a sudden feeling of tightness, almost like muscle pain across my lower back so flag that up if it happens to you).

I had a phone call from the unit prior to my treatment to ask me to come in early due to these precautions taking more time. At that point the nurse asked me how I was getting in and advised me not to drive due to the piriton 10mg (incidentally doxetaxol has a small amount of alcohol, it won’t take you over the driving limit depending on your dose but it is worth noting). At this point I had no alternative but to drive as I had made no alternative arrangements and I feel the risk of Covid in public transport and taxis is too great in my area. 
The infusion was done very slowly and I felt fine. I had the cold cap even though my hair has thinned considerably. First 10 mins was a little uncomfortable but then It was fine. I just don’t seem to get a cold head but the rest of my body got very chilled and even the blanket didn’t warm me up.

Leaving the unit I was unbelievably cold and shaky. Next time I’ll bring a warm coat.

I drove home easily with no drowsiness and heaters up full blast. I had husband as passenger to keep an eye in case I showed any sleepiness but all was good. However, had I had an accident My insurance may have been invalid so next time I’ll need to come up with an alternative as I’ll get piriton again.

After dinner I was overwhelmed with tiredness. I have never slept like it before. Completely out of it on couch from 8pm till 11pm then straight to bed where I slept till 5am. So 9 hours sleep despite steroids.

Feel ok so far today but expect side effects to kick in over next few days.

Whenever I visit unit I am always inspired by the other patients and how upbeat they usually are despite often worse diagnoses. One woman with a poor prognosis  kept us all amused with her positive outlook. She knew she had a time limit on her life and was doing all she could do ‘contribute to the universe’. She sang to us all, helped a nurse with advice on her art and just was so inspirational uninhibited and open.

So overall a positive day which got me thinking about that lady’s philosophy of ‘giving back to the universe’. I think I’ll take that onboard somehow.

love to all

Maire x

Maire
Member

Re: August 2020: starting chemo.

Hi Amy,

If you’ve switched to Doxetaxol chemo one of the side effects is muscle pain. The last time I had it I had really sore legs with constant muscle/nerve spasms. Also I think the injections can also cause bone pain. I found moving about helped if only to take my mind off it. It does pass. Hopefully you’ll feel better in a few days.

Renpen,

I’m so sorry you didnt get the results you were hoping for. Mammograms are not all that useful in dense breasts. My previous tumour did not show up on mammogram at all! It was only found because I had a routine clinical exam. I hope you’re feeling a little more hopeful today. Your tumour could be changing in ways that a black and white image can’t show. That chemo is powerful stuff and really attacks those cells in ways the naked eye just can’t see. So please try not to let yesterday’s disappointment knock your spirit. Maybe you should have a chat with one of your team who might be able to put things into perspective for you. It’s so easy to get into a spiral of despair when a chat with one of the experienced medical team can give you some realistic and reassuring insight.

Most of us are around the halfway mark now or approaching it. Hope everyone is coping.

Maire xxx

Amy1988
Member

Re: August 2020: starting chemo.

Hi everyone. I'm on day 6 of round 4 now. I think it dexamethasone I've been given, not sure! But I'm getting such bad joint pains and stiffness. I've taken paracetamol and ibuprofen but they've done nothing. Hoping my dr will prescribe me stronger pain killers, I can barely move! On the plus side, I didn't experience the nausea and I feel ok apart from pain. Hows everyone else getting on? 

renpen
Member

Re: August 2020: starting chemo.

Hi Maire

Thanks for your kind words.

No miracles yet for me! The radiographer said that she can’t get clear up images to be able to make a comparison due to my dense breasts, She says the only way to know would be to do another MRI, but its the onc whether they want to bother because it probably wouldn’t change the treatment.

So not the worst news but I have to admit I was really hoping for a positive boost. I’ve been very tearful again today just because I feel like its such a long haul and just once it would be nice for something to go my way.

I'm going to try and find out if there is any point pushing for an mri. Tbh, unless it’s going to be good news then I think I might need to protect myself from the stress of more waiting for test results.

Maire
Member

Re: August 2020: starting chemo.

Renpen, I can’t answer as I’ve always had chemo after surgery but I’m keeping everything crossed for you. The fact you noticed changes initially is really encouraging. Remember too your 3rd chemo won’t have really got to work yet. In terms of herceptin, I think it’s a bit of a miracle drug. I’ve read of it completely ‘curing’ secondaries in some people.

I tend to always prepare for the worst when it comes to results. I reckon any reduction at all, no matter how small will indicate chemo is working and even if there is minimal change in appearance that’s not to say cells within the tumour haven’t changed. I wonder if it changes from the inside out.

Good luck with it. You’ve had a tough time with chemo so I’m really hoping your tumour has too

Msire xxx

renpen
Member

Re: August 2020: starting chemo.

I finally got in for my no 3 TCHP chemo on Thursday, 9 days delayed. Tomorrow I’m going for my halfway ultrasound. The onc said the radiographer 'might' give me results whilE I’m there. Can anyone tell me what to expect?

I had felt that my lump was shrinking and my nipple was coming back to normal, but after the delay I lost the breast shape again. I also have stubble on my legs! So that means my cells have had time to regenerate and therefore possibly the cancer could be growing as well. 
I’m wondering What is reasonable to wish for after 3 rounds? 10% reduction? More, less? If anyone has any experience I’d be keen to hear.

Thanks all x

lucy53
Member

Re: August 2020: starting chemo.

Hey Amy - yeah the results are a huge relief & had a chat with one of the nurses on here before hand who were really cool & put my mind at ease over a few things. Sunday is grand so we can pencil something in & please if you feeling crap on the day then dont add any extra stress - lets do if and can on the day.

hope all goes well this week & anyone else up for a zoom then feel free to message emails too!

xxx

 

Amy1988
Member

Re: August 2020: starting chemo.

Lucy

3 more rounds for me too! I saw my consultant again yesterday for a check up and she said she's pleased with how things are going. That puts my mind at ease a little. No chemo today. I had an ecg but I got the times wrong so my results weren't back in time for my chemo to go ahead. But in tomorrow and Friday instead. I seem to get nauseous/ sick on days 1 and 2. I hate it! But yeah, they've told me this new stuff shouldn't be too bad for that. Fingers crossed lol. That's good news about your biopsies, what a relief! I will private message you my email. Sunday this week might be better for me if that would be ok for you? They've told me I could be there till 7 on Friday and then the possible 6 hours tomorrow! I just want to get it over with and that's another round done too 

lucy53
Member

Re: August 2020: starting chemo.

Hi Amy - hope you got on ok today? i was there for 6 hours too - no reactions to new stuff though & been told the biopsies etc all came back clear so least now can focus on the treatment plan in place with no hidden surprises. still up for zoom - if you private message me your email we can take it from there. friday/sunday afternoons are best for me but can be flexible since working from home & all. i was on EC for the first 4 rounds - really found the constant sickness unbearable at times. apparently this new stuff is less about the sickness and more the tiredness but everyones different so will just need to see how it goes. only 3 more rounds to go is keeping me cheery at the min!

hope everyone else is coping ok

xx

Amy1988
Member

Re: August 2020: starting chemo.

Hi Lucy. I've got to start the dexamethasone Wednesday too. 4 tablets twice a day, it's a good thing they're soluble, I'm no good at taking tablets lol. Was it different chemo that you've just had? I'm getting my new lot today and they've told me I could be there for up to 6 hours! I really hope I'm not. Sorry to hear you've not been well. But it will all be over before you know it. I'm still up for that zoom (I think???) Call if you are. Hope all goes well with your results 

lucy53
Member

Re: August 2020: starting chemo.

Hey everyone sorry not posted in a while. round 4 been pretty tough. i'm due round 5 & first of paclitaxel tomorrow. my bloods came back low so had to do a repeat today & hospital wont get the results til tomorrow morning. supposed to be there for 9am and need to take 10x dexamethasone 6 hours before treatment! Really anxious about taking the meds then it being cancelled if bloods not recovered on time (bad enough setting alarm 3am to take them!).

on the plus side only 3 more to do if all goes ahead tomorrow.

x

Maire
Member

Re: August 2020: starting chemo.

M bee,

Sorry number 3 has been soo hard. On the plus side it’s your last one so once you start to feel better you can have a wee mini celebration of this brilliant milestone. I’m at the same place as you: day 12 post EC 3 and I feel better than I have the whole way through. It’s so strange. 
The heartburn can be really bad but it is 100% treatable if you use lanzoprozole/omeprozole. Maybe call your GP for a prescription. I used it this time for 3 days when I knew the acid would be building up in my stomach and I managed to avoid heartburn completely and I can even drink fruit juice with no issues.

To cope with diarrhoea I tweaked my diet switching to white bread. This has helped.  I’ve avoided medication because I’m on soo much at the moment.

The only other change for me this time is that I’m on a high dose vitamin D/calcium tablet twice daily to build up my bones. This is because I’ve had Zometa. I wonder if this has helped boost my immunity. Either way I really think it’s worth us all upping vitamin D during these literal and metaphorical dark days.

Im moving onto doxetaxol next time round too. I know from personal experience that this was not as brutal for me the last time but then memory isn’t always reliable. I know it’ll make my mouth feel awful so I’m going to get proactive with the mouth care and buy in lots of yogurts and tomato soup.

Thinking of everyone going through the anxiety  of scans just now. 
Love

Maire xxx

m_bee_w
Member

Re: August 2020: starting chemo.

Hi Becci (and all you other amazing humans), 

I'm now 3 down, 3 to go. Had my last EC a week ago, and will be having Doxcetamol (sorry, no idea if that's spelt right) from now on. 

I've found this third cycle my hardest so far too. New side effects have emerged and it has taken a lot longer to pull myself through it. I've got a really sore throat and heartburn which is new this time. Compared to my two surgeries earlier this year (left mastectomy and axillary node clearance), chemo has been the hardest treatment I've ever experienced. Give me a wound to recover from any day! 

I'm being plagued by constipation this week, I felt like my stomach is full of setting concrete. Tried Sennakot and 48 hours later I had the worst diarrhoea of my life, which has now put me off using Sennakot again, despite me feeling desperately constipated once more. Is there anything else I should try?
I think my bladder is a bit enflamed too and I'm having period cramps despite not having a bleed since chemo began. Oh what a week! 

I feel so bald, bloated and featureless right now. A shadow of myself. My skin is blotchy and I don't fit into my usual size 8 clothes. 

Just read all this back... urgh what a miserable rant of a post! Hoping typing it out was cathartic in some way. 

Sending you all love and strength. x 

 

Shi
Community Champion
Community Champion

Re: August 2020: starting chemo.

Renpen ❤️ Please do speak to your team about your concerns, also ring the nurses on here too. Your team have seen it all before and are there to discuss everything with you, anything you want an answer to do ask them ❤️ You are hitting it with everything and doing amazing even if you don’t think you are ❤️ 💕💕Shi xx

Maire
Member

Re: August 2020: starting chemo.

Renpen,

I have just had a 2 week delay in my 3rd chemo due to infection. No one mentioned the effects of delay. The surgeon seemed keen to get things moving but it was because he hadnt realised I had already had 2 doses of chemo. Once he learned that he visibly relaxed. I think chemo stays working beyond the 3 week cycle. It’s def worth raising with your oncologist to get some more info.  I think they tend to stick to the same days of the week (certainly in my health board). Im guessing this is for scheduling reasons.

Its rotten being delayed. I had hoped to be ready to party at Christmas but think I’ll now still be immunocompromised. The only positive I can advise is that having had 5 weeks between chemo 2 and 3 I started to feel much better and this time round I’ve had absolutely no nausea or heartburn with round 3 which is so weird.

Fingers crossed for you.

Maire x

Amy1988
Member

Re: August 2020: starting chemo.

Hi renpen. I don't know what the delay in chemo would do. But if you've tested negative then I don't get why they're still delaying your treatment and for 2 weeks?? Could you speak to oncologist/ consultant? Hopefully if you tell them your concerns then they might bring your chemo forward again. I had a sore throat and slightly raised temperature too and they made me have an covid test, but thankfully it was negative. But I was worried about my treatment getting put back too. I hope they can sort it out for you 

I just realised you said a 9 day delay not 2 weeks. Sorry, I'm hopeless! But definitely talk to your team 

renpen
Member

Re: August 2020: starting chemo.

Does anyone have any experience of delayed chemo and if it will affect the outcome?
Last week I was feeling so positive. My onc had told me that my blood counts are really good so she would reduce me to 5 days of Zarzio injections (I’m sure it’s the injections that make me feel crap) and give me steroid lozenges for my mouth sores and I was so ready to get no.3 done and be half way through.

then on Friday night I had a sore throat, and I panicked and booked a Covid test. MISTAKE! The results took 3 days to come back and the hospital have delayed my chemo by 9 days to be 2 weeks clear of symptoms even though the test result was negative. 
Everything I see online says 7 days delay is fine but nothing about longer. My BCN say she’s 'sure it will be fine but we wouldn't want to go to 2 weeks'.

Now I feel like I can feel it growing again. I have grade 3 so it’s an aggressive cancer. And it's messed up all my dates so now I will be sick at Xmas instead of celebrating finishing, and instead of finishing 2 weeks before the end of school holidays next year I will be finishing 2 days before so no celebration holiday possible either! 
But mainly I just want to know that it won’t affect my survival chance? 

lucy53
Member

Re: August 2020: starting chemo.

cool! more than happy to set up.. i will bring tea hot bottle grumpiness and no vid cam if peeps dont want. date and time with considerness. anyone else in let me know either just like or private message & we set up xxx

Amy1988
Member

Re: August 2020: starting chemo.

Lucy, i think thats a good idea! It would be lovely for us all to chat together and give support and advice

lucy53
Member

Re: August 2020: starting chemo.

would anyone be up for a august starter zoom so we can compare notes? just a thought know its tricky at the min but maybe some virtual support might be an idea? xx

Amy1988
Member

Re: August 2020: starting chemo.

Hi lucy. Yeah, ive been told the new chemo side effects will be 'different' to the other. Nausea and sickness are what i dread most! I would love to still be working and going out on good days too. It can get really lonely and boring just being stuck in. I go into shops but rarely now, as im fearfull about covid. I think 2020 is a write off. Heres hoping we all can beat this and celebrate soon! 

 

Maire

I haven't managed to get maltesers yet, but ice cream and a little bit of chocolate sauce is ok for me. Got to have my sweet treat lol

 

 

Becci

Sorry to hear you've not been well. Ive found round 3 tougher too, bowel problems, light headed and i couldn't focus on things. It seemed to take longer this time too to 'feel better'. Are you having a check on your tumours with your oncologist? I hope it goes well for you. 

 

lucy53
Member

Re: August 2020: starting chemo.

Hi Amy 🙂

i've had 4 rounds EC - due to start 4 rounds Paclitaxel. i've also been worrying about the change - the nurse said last time the side effects of paclitxel are not as bad as EC but i'm sure they said that about EC at the start! its friggin awful isnt it wouldnt wish this on worst enemy. think its worse not being to do anything normal on the good days cos of this covid rubbish! bring on 2021 we will of beat this pish n be skippin about by spring xx

Amy1988
Member

Re: August 2020: starting chemo.

Hi lucy. Ive got round 4 coming up on 15th october. Im worried because its changing. I'm not sure what im having (i think they said herceptin and doxetal??) But im worried about how it will affect me. I will have to hope for the best! What chemo are you having and how many rounds have you got left? Good luck with your ultrasound. I had my check up not long ago and will be having ultrasound 9th. The chemo is working and it does give you a boost when you know the chemo is worth it. I hope it goes well for you

lucy53
Member

Re: August 2020: starting chemo.

Hi everyone

Just thought i'd post to hopefully reassure some of you - i'm day 5 after round 4 chemo & although the side effects have been worse than ever over the weekend today i feel actually  ok! it was so bad i didnt think i'd last but i feel full of hope today so if any of you are feeling as rough as i did then there is light 🙂 going for ultrasound today & have appointment with onc thursday to see if this horrible chemo is working or not. fingers crossed & big hug to all of you we will get through this xxx

FindingDory
Member

Re: August 2020: starting chemo.

Hello ladies, i’m sorry i haven’t been on for a while - tbh i’ve been feeling so awful after round 3 that i was scared to come on here & tell you all, but it seems i’m not the only one unfortunately! I’ve felt so much more tired this time but find it difficult to drift off to sleep at night for the 1st week or so afterwards, so i’ve been exhausted. The sickness lasted slightly longer, ulcers in my mouth, constipation followed by sudden diarrhea and lots of aching  /pain all over my body. I have round 4 on Friday which is my final EC before going on to 4 rounds of Docetaxel and i’m absolutely dreading it. I’m only just starting to feel better, i see my Oncologist Wednesday so i’ll have to make a list of things to tell him so i don't forget anything! 

I know that some of you will be having your surgeries after Chemo, so are awaiting scan results etc, i hope that you all get good news. I’ve already had my two breast surgeries in May/June and in my experience, in comparison to Chemotherapy it makes surgery seem like a walk in the park. I had a lumpectomy, lymph node clearance & then more tissue shavings so if any of you would like to ask me anything i’d be more than happy to share my experience with you & hopefully help in some way.

Sending you all a big hug, Becci xx

 

Maire
Member

Re: August 2020: starting chemo.

ps Amy 

I went off chocolate too but find I can still gobble down Maltesers. Worth a try!

Maire
Member

Re: August 2020: starting chemo.

Hi all, 

Im with you all on feeling rubbish on Fec 3. Got it on Thursday, felt good yesterday but awful overnight. It’s 11.30 on Saturday and I’m still in bed. Headache, upset tummy, hip pain and just awful. First injection today.

Its my youngest 18th on Thursday and I really want to feel better then.

I move on to doxetaxol next time too. I remember it giving me muscle spasms, heartburn and horrible ashy mouth.

Wish it was all over!

Love to all

Maire x

Amy1988
Member

Re: August 2020: starting chemo.

It seems like round 3 has been tougher for most of us. I really thought after round 2 that maybe it wouldn't get worse, but im wrong! And im going to have to give up chocolate lol. Ive tried different varieties but it all tastes disgusting now. I haven't got the 'metalic' taste but somethings not right even with savoury food. 

Tara, yeah im on fec t and due to change for 4th round. Im anxious! Im going to have to get more stuff for the acid reflux, its not too bad now but it comes on randomly. I don't know much about radiotherapy but ive got to have too after op. Hopefully it won't be too bad for you. 

 

lucy53
Member

Re: August 2020: starting chemo.

Hi Nicki

yea i feel for you - i felt so ill after round 3 & it lasted way longer than previous rounds. i felt even more sick on Tuesday just knowing whats to come. we are getting through this though! i've got 4 rounds of paclitaxel next followed by op & radiotherapy.  all be over by spring (my fave time of year) & hopefully less covid by then!

xx

nickik
Member

Re: August 2020: starting chemo.

This is my 3rd round of EC and day 6 and I have felt absolute rubbish ...the worst so far! I have felt so tired and lethargic every day and no appetite. Stomach upset too...I just wonder how Im going to carry on I have 1 more round of EC and then 12 weekly treatments ...does anyone else just feel like giving up. 

lucy53
Member

Re: August 2020: starting chemo.

Hi Amy & everyone

i had round 4 of EC chemo yesterday. i also found side effects worse after round 3 almost fainted a couple times - had hard swollen veins, sickness non stop - i found this all stopped after the 5 day zarzio injections.

gave up on the cold cap as apparently the next type of chemo will take 4-5 hour drip & didnt fancy having to hang about  another 90 mins on top of that.

half way through now - had biopsy & mammogram before chemo - hoping that will come back clear so i can have a break before operation in january.

been watching this to get through the insomnia  https://www.youtube.com/watch?v=4YssM-HO6fU anyone else found anything funny please share!

hope yous are all keeping well

ttyler
Community Champion

Re: August 2020: starting chemo.

Hi ladies,

Hope you are feeling as well as you can.

Amy - I am sorry to hear of your side effects this time, are you on FEC-T? The reason I ask is because I found the side effects of my 3rd round much worse than the first two. Additionally, I have been having more trouble with an upset tummy and heartburn this time after my final dose of Docetaxel. I think it is quite common as the more chemo you have the harder it gets. Thankfully, I am finished now and have my radiotherapy planning appointment booked for next Tuesday, so keep telling myself side effects should start to improve. Like you have said you are half way through now, well done your nearly there. The side effects from Docetaxel I found are different to FEC, more bearable if you like. I hope it is the same you if this is the treatment you are having.

 Regards to heart burn I take lansoprazole prescribed by the consultant and gaviscon too. You will need to ring the number and check out it is okay to use anything that is not prescribed to be on the safe side.


I bet most of you are half way through now, keep going you are doing so well and should be proud of yourselves.

 Sending love❤️ and strength 💪

Tara xxx

 

Maire
Member

Re: August 2020: starting chemo.

Amy,

Ive has the lightheaded ness too. It’s made it difficult to drive and When I’m outside I worry I’ll lose my balance. I tend to give in to it and have a lie down or a sleep in the early days after chemo.

I also have reflux and take lanzoprozole which takes a few days to help. This is on EC. I know from previous experience that Doxetaxol can cause bad digestive issues too.

Im getting chemo 3 today with Zometa. Is anyone else getting Zometa? I had an early stage BC with no lymph involvement but high oncotype score. The Zometa is to prevent bone metastasis.

 

Amy1988
Member

Re: August 2020: starting chemo.

Hi. Hows everyone getting on? Im on day 8 of round 3 chemo now. Ive been feeling unwell for the last few days. Just not right, light headed, shaky and not really being able to concentrate very well. Its the worst 1st few days ive had so far on chemo! But im halfway there now. Im seeing my consultant/ surgeon today so hopefully i can talk to him properly about the op. Does anyone else suffer with bad acid reflux? My oncologst has given me a capsule to take each day but it only works for an hour then it returns! I hope you're all doing ok with your journeys too

Maire
Member

Re: August 2020: starting chemo.

Hi Renpen,

I’m not sure if I’m on the same injection as you (Filgrastim) but I definitely feel they contribute to my nausea. 2 days after I finish them I start to feel better. I also get bad heartburn/ reflux and have had to moderate my diet. Drinking anything is difficulty: fruit juice is too acidic, can no longer drink tea and water makes me feel sick. I can just about manage very diluted apple juice. This will sound mad, but I now inject into my thigh rather than stomach and 2nd time round I didn’t get the headaches I got the first time. It may be totally coincidental. I’ve recently switched to a really bland diet with white bread etc. This is to counteract the diarrhoea caused by huge dose of 2 strong antibiotics I’m on for mastectomy cellulitis. It has worked! Hopefully it’ll help with reflux. I’m also supplementing with probiotic yoghurts for gut health.

I got my first wig from a local nhs supplier but it really wasn’t what I wanted and I will never wear it. I ordered 2 from simply wigs and kept 1 which I’m pleased with. Their returns process was easy and Ive received my refund (you have to pay return postage). I also cold capped but have very little hair left. It is still coming out so I think, for me, the cold cap has only delayed hair loss. I’m going to persevere in the hope it’ll have protected the follicles a little and regrowth will happen sooner.

Weirdly, I’ve also just order loads of bulbs with the same aim as you. Dreaming of a beautiful display in spring.

After a 2 week delay due to infection and 6 days in hospital I’m hoping I get chemo 3 on Thursday along with 1st Zometa. Dreading it but also wanting to bring it on in equal measures. It’ll be my last EC before stating Doxetaxol.

Wishing everyone having scans and surgery etc the very best of luck. Xxx

 

 

renpen
Member

Re: August 2020: starting chemo.

Hi Everyone 

I’m now day 13 after 2nd cycle, feeling much better and determined to get control next cycle as best I can. I have some questions:

Does anyone else have the Zarzio injections and feel that these are what wipes you out? I’ve been reading about people using antihistamines to reduce the reaction. I’m going to ask my onc but wondering if anyone has any experience?

Im getting a really 'toxic' reaction in my stomach, I guess it’s stomach acid. I take omeprazole and gaviscon. Any other suggestions for this?

Also, has anyone found a decent online wig supplier. Despite cold capping it looks like I need to splash out and buy one but all the local suppliers are closed due to Covid so I’m going to have to risk buying online. Ideally I think I want a topper for now as I still have quite a bit of hair.

Its so confidence building to know that despite being so low for a week, I can bounce back to normal (ish) and I’m hoping now to manage the lows better.

in other news I have ordered 100 spring bulbs ( I am really not a gardener!). My plan is that when the flowers come up in the spring the worst of this will be over and the flowers will represent my new (hair) growth!!!

Shi
Community Champion
Community Champion

Re: August 2020: starting chemo.

Sarah 👍 some nice statement necklaces too 👍 I was a wig girl all the way, when I tried a scarf of a turban instead of looking fabulous and chic I looked like spare out of carry on up the kybhur 🙄 not quite what I visioned so hit the wig buying on amazon 👍tinsel bobs for Christmas, coloured bobs just because I could 😁 I had to try and keep happy when chemo too my hair, and remembered it’s only temporary and my hair would grow back 👍 red dot lush shampoo bar called new and extra dark Jamaican black castor oil on bonce when treatments finished (tips given by lovely people) and worked well 👍 there is a girl on you tube who has alopecia who does good makeup tutorials if you’ve been unauti get to look good feel better because of Covid 👍 she does great eyes and brows 👍💕💕Shi xx

SarahT20
Member

Re: August 2020: starting chemo.

Thanks Shi. I have to say I don't hate the look, definitely looking forward to playing with some strong lipstick shades 😁

Shi
Community Champion
Community Champion

Re: August 2020: starting chemo.

Hi Sarah a silk pillow case will help scalp during the night ❤️ Beauty despite cancer do good scalp care kit, might be worth a look 😘 it’s your choice if you want to take rest off rather than having patches but with being grade 2 now it’s not as noticeable, but do what you want and what’s right for you, get a bit of make up on 😘 bet you are amazed how big and beautiful your eyes are looking with your shorter hair ❤️💕💕Shi xx

SarahT20
Member

Re: August 2020: starting chemo.

Hi everyone, 

Hope you're all doing well. Wondered if I could ask some advice from those of you have taken the plunge with shaving your heads. I'm a week after my second EC session, and after developing a bald patch on the back of my head decided to shave it all off. I've gone for a number 2 for the moment and am wondering if anyone has any hair/scalp care tips? 

xx

Amy1988
Member

Re: August 2020: starting chemo.

Hi tara. Really sorry for the late reply! I had round 3 of chemo yesterday and wasn't feeling too good. Ended up in bed for the rest of the day. I think in regards to surgery its fear of the unknown. And you're right, its only hours (which hopefully we don't know about!) compared to the months of chemo we have to go through. Ive never had an op before so im just imagining everything that can go wrong will go wrong lol. Im scared i will wake up during the op or not at all. But i know it has to be done. Thanks for your lovely message. I hope you're getting on ok now

ttyler
Community Champion

Re: August 2020: starting chemo.

My name is Tara, not tartar. Sorry fat fingers x

ttyler
Community Champion

Re: August 2020: starting chemo.

Hi Amy,

I’m Tatar’s, have jumped in from June chemo starters. I noticed you said you are nervous about the surgery you are due to have. I’m wanted to let you know that I felt exactly the same. Before my therapeutic mamoplasty I had never had an operation before. Not even a filling on my teeth. 

 Although chemo had not been bad for me, not compared to the side effects others have had, I found surgery a walk in the park in comparison. I was nervous that I would wake up on the operating table. This did not happen, in fact I had a lovely sleep. I felt a little hung over for a day or two after, but think this was more to do with dehydration as I could not drink after 6:30am in the day of surgery. I know we are all different, but I feel you will be fine.

 Good luck to you and all the other ladies having treatment.

 Lots of love 💕 

Tara

Amy1988
Member

Re: August 2020: starting chemo.

Hi nicki. Thats brilliant news for you! And like you say, it makes it worth it now to go through chemo. I thought they would've booked me in for a scan too, but ive only got ultrasound and heart check up for now. I don't want another mri lol. It was the worst of the scans i had. Im getting different treatment from my 4th round too. I have to have it over 2 days. Bit nervous in case it makes me really ill. I need to stop myself thinking about the surgery. Im torturing myself with fear. But im seeing the surgeon on 1st october, so i might talk to him about my concerns. I don't envy them having me as a patient lol. I'll let you know how i get on tomorrow. The 2nd round hasn't been too bad so im hoping that means im getting more used to the chemo.

nickik
Member

Re: August 2020: starting chemo.

Hi Lucy

 

I think everyone must be different regarding progress because I had an MRI before starting treatment and another one following my 2nd round. My appt with onco this week fortunately was a bit of good news that my tumour was shrinking. I have another MRI following my 4th and final round of EC then move onto weekly treatments of a different drug. 

I try not to think too much about my tumour as I get overwhelmed but its obviously good to hear a bit of positive progress.

Hope you find out something soon.

 

Nicki x

nickik
Member

Re: August 2020: starting chemo.

Hi Amy

 

Good news on your tumour size 👍 👌 I too had some good news that my tumour is shrinking I had an Mri a week ago, so it feels at least you are going through all this for a reason!

I still have a way to go with my treatment, got my 3rd EC treatment on  Friday, then 1 more to go followed by 12 weekly treatments of something else...I cant even think about that stage yet. Then surgery to follow ..I can only cope with bite size thoughts of my treatment otherwise I get overwhelmed.

Good luck for tomorrow hope side effects are minimal.

Nicki x

Amy1988
Member

Re: August 2020: starting chemo.

Hi. Hows everyone getting on? Im starting my 3rd round of chemo on thursday, i'll be half way through. I had my tumours checked today and they're softer and smaller, im relieved the chemo is working. Ive been booked in for an ultrasound and my heart has to be checked again. Im really freaking out now about surgery, i know it will be end of this year/ early next year. Im such a worrier and ive never had an op before. Side effects haven't been too bad this round but just found i had a few extra ones! Very frustrating. And chocolate doesn't taste the same anymore, im gutted i can't really eat it now lol. Hope everyone is ok and getting on well with chemo well

Amy1988
Member

Re: August 2020: starting chemo.

Hi lucy. Im about to start my 3rd round of chemo this thursday. Im nearly half way through like you (and im freaking out lol) and my consultant did a check up on my tumours today. I thought they did them half way and at the end. Hopefully you won't have to wait long for yours. But the waiting is stressfull, i couldn't relax until i had been checked. But ive got to have an ultrasound soon too. Sorry to hear you're not feeling good. I haven't experienced the hyperness, but ive had a few strange side effects. I think we just learn as we go. I hope you get your results soon 

Shi
Community Champion
Community Champion

Re: August 2020: starting chemo.

Renpen ❤️ Glad round 2 being bit kinder and you are managing better 👍 chemo really is like being on a rollercoaster you just have to hang on and keep 😁 even though you might be 😳try keeping 😁 break cycles down into weeks rather than the months left, it does help it go quicker 💪 you do what you have to do to get through chemo, little treats along the way help 👍❤️ You might not think so but you are doing great 👍❤️ You all are ❤️👍💕💕Shi xx