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April 2021 Chemo Starters

125 REPLIES 125
Shi
Community Champion
Community Champion

Re: April 2021 Chemo Starters

Hi Michelle ❤️ Keep focused 💪💪 you are doing great, ticking them off and getting there 💪💪❤️ Have a treat after each one ❤️ Excuse for chemo shopping finger, the steroids made you do it 😁 well that’s the excuse us Oct17 lot used anyway 🤣 👭 step by step you will do it again Michelle ❤️❤️💕💕Shi xx

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Shi, unfortunately I’m not eligible for any trials because of having BC in 2018, my oncologist checked that out early on. The carboplatins are a fairly new development in TN treatment and seemed to show good fairly good results in trials so hopefully it will do the trick for me.
Thanks for your support Shi it’s really appreciated. xx

Shi
Community Champion
Community Champion

Re: April 2021 Chemo Starters

Hi Michelle 🤞🤞you are half way now ❤️ Don’t forget to see about any trials you might be Eligible for and speak to your onc about them ❤️ I was a fec-t so not idea sorry about the treatment you move to next. Keep focused you are ticking them off like before ❤️❤️❤️ And doing amazing again ❤️💕💕Shi xx

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Shi

Thanks Shi,  lovely to hear from you. I’m not sure if I’m halfway. I have had 3 FEC and just had an USS. The tumour had shrunk but only very very slightly so I’m not sure if that means I will have to have extra chemo. I start a new regime on Thursday and will see the oncologist so get to ask then. I will have either 9 or 12 of carboplatin with Paclitaxel. I’m not sure if I want to have 9 or 12, as much as I want to be done with chemo I really want the best results possible. 
I will have to wait and see.

How is everyone else doing? 

Michelle x

Shi
Community Champion
Community Champion

Re: April 2021 Chemo Starters

Hi Michelle, are you half way now? You are all ticking them off, step by step as you know ❤️ 💕💕Shi xx

Michelle21
Member

Re: April 2021 Chemo Starters

Everyone is very quiet, how are you all doing? It’s hard at this point because it feels like it’s going on forever but hopefully everyone is almost halfway now. 
sending love and big hugs to al x

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Lindsay

how are you doing now? I hope you are enjoying the ‘good’ times! It is really tough to stay positive when you are feeling so awful, I assume you are on steroids and that is why you are awake for so long. I hate steroids, they make you hungry, keep you awake and make you down when you stop taking them. You have to focus on the fact you are halfway through, I’m sure you will feel better once you have done the bad first week of the next cycle. The end will be insight. 
I am still using loo rolls to measure time, and to help time pass I walk in the mornings usually get home about 11am by which time the morning is gone. Then I potter in the afternoon doing what I can, reading is always a good distraction if you can concentrate. I’ve just finished where the Crawdads sing and that was good. An interesting story to draw you in but not so complicated that it needs loads of concentration. At about 4:30 I start thinking about what’s for dinner and slowly prepare that. It’s not the most exciting routine but it gets me through the day. 
Remember you will get through this but it’s not easy. Do you meet with friends at all? I haven’t told as many people this time as I just want to get on with it and hope that I get good results but I find seeing a friend every morning and talking about normal stuff helps me keep more upbeat. 
Im sorry I can’t be of more help, it seems everyone here has gone to ground, we are all just struggling through, it’s not a normal situation to be in. I sometimes read threads of those who are further ahead than us and to see them talking about hair and nail regrowth sometimes makes me feel better. 
I hope you are getting by 

Michelle xx

Linds7oaks
Member

Re: April 2021 Chemo Starters

Hi Everyone,

I hope you’re all doing well. I’m sure some of you out there struggling right now and I just hope you get through it as soon as you can. This is such a tough time, way worse than I ever expected.

I have just come through my third cycle. I suppose it wasn’t as bad as the first two but when I was in the middle of it, it still felt pretty horrendous. I was less nauseous but just so exhausted that I could barely move, yet I couldn’t settle to doing nothing. It’s a unique new form of torture. Does anyone else find this? I am really struggling with the fact that I’m going to have to do this three more times. I’m normally so positive but I’m finding this really hard. I’m halfway now And I just hope that somehow I find some positivity to get me through the second half.

I now have almost 2 weeks before the next treatment which I will try and make the most of it and enjoy with my family. I am still feeling traumatised by how awful each cycle is and struggling to just move on. 

Apart from watching tv, how do you get through the awful days? I hate waking at 6am and knowing I have until 10pm to be awake and feel awful. It feels like forever. 

I can’t really eat much during the bad week so top tips are frozen tropical  smoothie mixes from M&S and Complan. That was all I could eat and still lost half a stone but it got me through. 

Also I had really bad anxiety this time and the GP prescribed medication which helped with that and it also helped me to sleep.

All other top tips would be gratefully received! 

Best wishes 

Lindsay

Michelle21
Member

Re: April 2021 Chemo Starters

Good morning all!

How is everyone doing today?  I’ve just been for a beautiful walk whilst the sun is out and I’m feeling good.

My next cycle is Friday, I’m feeling good physically but starting to fill with dread for the next one. I’m also starting to worry what if it’s not working. I think that is because I have a scan during the next cycle to see if it has shrunk at all so it is on my mind. 
It’s not easy is it? If it’s not the physical SE’s it’s the mental worry. 

Hope everyone else is doing ok, positive thoughts to all. x

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Lindsay 

its good to hear that your onc has put a plan in place for your next cycle, I really hope it works for you. When do you have your 3rd? My third is a week today. I try to live in the moment and enjoy each day that I’m feeling ok but it is never far from my mind. 
My husband thinks I’ve gone a bit mad with the loo rolls but I think he is of the opinion of whatever gets you through! A trip to the New Forest sounds good, something to focus on. 
Kirsty and Cookie hope you both are feeling a better. 
Steph how are you doing?  I hope you are coping ok.

Positive thoughts to everyone on this thread xx

Linds7oaks
Member

Re: April 2021 Chemo Starters

Hi everyone 

@cookie365 oh no poor you! Thank goodness you went in. It just shows that as soon as there is sign of infection, you have to call the emergency number. I was admitted for 5 days after my first cycle with similar neutrophil levels and they sorted me right out so I keep such an eye on my temperature now.

I know what you mean about feeling a wuss but after 2 horrendous cycles, I can’t be brave anymore. I had a good discussion with my oncologist who has given me steroids and aprepitant for longer to see if that helps and my GP has put me in touch with the District Nurse who can and deliver injections if needed so at least I feel there’s a plan in place. Also we moved the chemo day so my absolute worst time won’t fall on the weekend when it’s harder to get specialist help. 🤞🤞🤞

@Michelle21 I love the idea of buying the toilet rolls to see you to the end of the chemo! I wonder if we could come up with any other good ideas. It’s hard to plan much if you have more treatment after the chemo (I have surgery then radiotherapy then continued herceptin) but if it works out, we will go down and stay with family in the new forest in August. 

@KirstyG  it sounds like you had a really tough scary time. I hope they got to the bottom of it.

Lots of love to you brave ladies, we’ll get there....

Lindsay xx

cookie365
Member

Re: April 2021 Chemo Starters

Hi all,

been a bit of a week. I took your advice everyone and called the red card. I was rushed straight in and have just spent the week in hospital with Neutropenic Sepsis. Never felt so bad in my life! Turns out, my body didn’t make any bone marrow - despite the injections. My white count was down to 0.05.

Home now with oral antibiotics and normal chemo side effects. Hair started to fall out Monday so clipped it short like GI Jane. Now it’s just little bits and bald patches appearing. 
Think my next chemo has been put on hold till they can understand what happened.

Thanks everyone for the advice .....I was beginning to thing I was a wus.....so glad I called them

💜💜💜

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Kirsty how are you feeling today? I sincerely hope you are feeling better. Hopefully you can get your strength back up before the next one and it will run smoother.  It’s hard going isn’t it, chemo is such a brutal treatment. Hopefully we will soon be halfway through. 

I’m trying hard to make time go as quick as possible, after the next one we will be halfway (although I may not be if I have to have 12) I’m doing really odd things to try and make it feel like it’s going quicker I’ve bought about 4 bags x24 loo rolls and keep thinking when they are gone Chemo might be finished! No I wasn’t one of those people who stocked up at the beginning of the pandemic! 
Keep in touch everyone, we can help each other through this xx

KirstyG
Member

Re: April 2021 Chemo Starters

Hi All,

Sorry it’s been a while, I’ve just not felt up to anything recently. Had my second Chemo and picc line in but ended up with a clot on the line, which I now have treatment for going forward. I also ended up in hospital the other night after waking with a very erratic heartbeat, seems it could be due to the clot or meds, however they did give me some antibiotics as well. Just feel really run down this time. I keep reminding myself that I’m a third of the way through and after the next one will be halfway there and I’m sure in a couple of days I will feel better.

Sorry to hear some of you are also having a rough time. Sending lots of hugs and positive thoughts your way, we are here for each other xx

Michelle21
Member

Re: April 2021 Chemo Starters

Hi how is everyone doing?
Cookie I hope you were able to get something for thrush and are feeling better now. Pips, Steph, Kirsty how are things going with you all? Once we’ve had our next one we will be halfway through. That thought helps get me through. 
Linda I hope you’ve had a good week and have fun plans for the weekend. Like you I’m just through the horrible week and going to try and enjoy the next two.  
I am noticing that I’m getting pretty tired, even when I wake up I feel tired, although it doesn’t help that every night I wake and thoughts start whirling around my head. Like you say cancer is never far from our thoughts,
I think we are going to Avebury today to see the stones. It’s a day out to try and think of something other than cancer and who knows the stones may bring me luck. 

I am thinking of you all and sending positive thoughts and big hugs xx

Linds7oaks
Member

Re: April 2021 Chemo Starters

Hi everyone 

Cookie, definitely call the emergency number, you’ll need antibiotics. I totally get the desperation and I hope they can help you with the SEs straightaway. As it’s a bank holiday, you’ll probably get directed to A&E which is a pain but they’ll sort you out. And then let your oncologist know so he/she can consider your next cycle. I emailed my oncologist’s secretary who kindly fixed up an appointment for us to review my next cycle.

Michelle, I hope you manage ok today as it’s a bad day for you.

 I am finally through the hideousness and trying to just enjoy the weekend although cancer and chemo are never far from my mind. I have 8 more good days that I really want to enjoy. I am going to work from home this week and see a few friends and family. 

I am really thinking of you all and hoping things improve as I totally understand the desperation xx

Shi
Community Champion
Community Champion

Re: April 2021 Chemo Starters

cookie you need to rapid response your team the thrush will need antibiotics fluconzole is a good one they can prescribe rather than the drops, please let us know how you get on but please ring your team while on chemo it’s not like normal a bit of cranberry juice doesn’t cut it, please keep safe 💕💕Shi xx

Michelle21
Member

Re: April 2021 Chemo Starters

Oh Cookie it sounds like you have every SE going, I’m so sorry to hear that. I’m not sure I can be much help. Do you have something for the thrush? You GP should be able to prescribe something.  I hope you didn’t hurt yourself when you blacked out. 🤞SE’s don’t last much longer. 
I’m planning on a morning in bed, I would usually be out walking but enjoying an empty house for once. Also this is one of my worst days, headache and achey, so nice not to do anything. 
Hows everyone else doing? X

cookie365
Member

Re: April 2021 Chemo Starters

Sorry all, been feeling really rough.....the side effects are pretty horrid at the moment. Sorted the constipation but got terrible diaphragm pain, oral thrush, sore throat, nausea and the leg and hip pains are killing me. Blacked out in the bathroom last night.....feel like a bag of shit! 
any tips anyone?.... feeling quite desperate ☹️

Linds7oaks
Member

Re: April 2021 Chemo Starters

Hi ladies 

Pips, I am so sorry that you had such a bad time in your first round. It sounds awful. I totally relate to the complete meltdown after two weeks of nausea, it is just unbearable isn’t it? That’s good that you manage to totally change your chemo regime. How did that happen? I’ve had such a bad time in my first two cycles that I would love to change mine and I will ask the oncologists if it’s possible but I just wondered how the process worked? Did your oncologist say that weekly is just as good as your previous regime?

Cookie, sorry to hear that you’re not sleeping well on the steroids. I found that in my first cycle and actually asked for sleeping tablets for three days just to get me through that time and they did really help. I didn’t have any side-effects from them and woke up pretty early and wide-awake so would recommend them. Sorry to hear that your port isn’t going well. What happened? I had one fitted and I’ve had no problems at all. It was sore to begin with, just bruising in the local area, but it’s fine nowAnd makes the chemo and blood test so much easier.

Michelle and Cookie, I am so sorry that you are going through this again. I’m not quite sure how I would be able to cope with that. Although I’m not quite sure how I’m coping with the first time and yet somehow I am so I suppose we have to find the inner strength in us somehow.

I finally came out of the other side on day 10. That is the same as the first cycle. So I suppose the worst case scenario is I will feel absolutely dreadful and not capable of anything for five days. I know it’s worth it to beat the cancer but this is the toughest thing I’ve ever been through. I have never felt so dreadful, constantly nauseous and absolutely exhausted and not able to settle to anything or eat anything. I lost 5 kg in a week. I did keep on drinking plenty of water but was very emotional. 😢😢😢😢

Thanks to everyone for sharing their journeys. I really helps to feel that we are in this together. Best wishes to you all for the weekend, I really hope you’re all feeling okay, although I’m sure that some of you aren’t. All I can say is, the rough times will pass, we will get through them and it will be worth it to come out the other side.

Lindsay x

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Pips 

Sorry to hear you’ve had such an awful time of side effects. I hope the pacitaxol and herceptin are better for you. 
My previous chemo was Docetaxol and herceptin & Perjeta, so every 3 weeks. I don’t remember having any nausea on Docetaxol. 
I am going to start pacitaxol after 3 FEC, a friend of mine has had pacitaxol and she said it was much more gentle although I expect that depends on your dose. I’ll be having carboplatin every 3 weeks with my pacitaxol and that sounds quite harsh so a bit worried about that. 

When does your new regime start Pips?  I wish you all the best with it xx

pips88
Member

Re: April 2021 Chemo Starters

Hi guys, 

thanks for all the support. Sorry it’s taken me so long to get back on here.

I really struggled getting over round one of EC, I think I actually managed to have every bloody side effect going so I had a major meltdown by week two of constant nausea and muscle weakness. I saw my oncologist yesterday and we’ve agreed to move on to weekly Paclitaxe, and start the Herceptin. Has anyone else had this chemo? 

The EC was so bad I’m terrified of starting anything now. 

Hope everyone is well, hugs to all xx

Michelle21
Member

Re: April 2021 Chemo Starters

Resting sounds like a good plan Cookie. Glad it went ok. Did you have cancer in both breasts or was the d mastectomy precautionary?
I know what you mean about people saying they understand, it’s a difficult one isn’t it.

I found I felt myself again after the first 5 days until then I just walked and slept! Take care xx

cookie365
Member

Re: April 2021 Chemo Starters

Hi Lindsey and Michelle,

felt really washed out and a little tippy so resting in bed as got zero sleep last night......steroids!

My last chemo was 12 sessions. It was quite intense, luckily I only need 6 this time. I had a double mastectomy just before Christmas then they found there was still cancer in the nodes so had my armpit clearance 6 weeks ago. I had a port fitted last week and would rather go thought having my boobs off....I didn’t like it one bit 😳😭. I can’t have radio as I had that previously, therefore, after chemo they are going to put me on hormone replacement therapy for 10 years.....hopefully that will do the trick!

Got the joy of starting the injections tomorrow and then a heart echo next week......my what busy lives we lead!!

Hope you ladies are safe and well.....can’t tell you how good it is to talk to people who are going through the same. Folk say they understand but they don’t and I wouldn’t want then to.

💜💕💜

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Cookie,

I hope your chemo has gone okay today and hopefully you’re not feeling too bad. How long ago was your last chemo? This isn’t my first time either, mine was 3 years ago and I coped quite well then. I am noticing than I am more tired this time and just the fact I am having chemo again worries me. I can really just think of now and I have to have chemo because of the type of cancer it is. What happens in the future I will have to face when or if it happens. Easier said than done sometimes. Let us know how you get on. 


Lyndsey last time I had herceptin and Perjeta too as I was HER2+ then and I had it with docetaxol. I hope your team can sort sort something for you xx

 

Linds7oaks
Member

Re: April 2021 Chemo Starters

Hi Michelle 

I am on TCHP x 6. I think it’s pretty aggressive as it’s triple positive so 4 drugs each time. Is anyone else on this regime? I am going to ask if there is any alternative as I just don’t think I can cope again although I will if I have to, of course. It’s just so much worse than I ever imagined. Or maybe it’s just how my body is reacting to it. I would love my oncologist to say it’s going to change.....

Cookie365, good luck today. It must be so tough going through this again especially as it was so difficult last time  🤗 

Good luck to you all this week 

Lindsay

 

 

Poacher65
Member

Re: April 2021 Chemo Starters

@Michelle21

I will be thinking of you and Kirsty Friday...lots of positive thoughts. 

Xx

cookie365
Member

Re: April 2021 Chemo Starters

Hi, due to start chemo tomorrow and started my steroids today. Really quite nervous as this isn’t my first rodeo! However, I am assured the chemo I had for my lymphoma a few years ago was very aggressive. Don’t know which is worse.... not knowing what to expect or having the memories for my previous experience. Any support and advice will be greatly appreciated 💜

Michelle21
Member

Re: April 2021 Chemo Starters

Oh Lindsay I’m so sorry to hear you are having such a hard time. It must be awful to have nausea for so long, I am not surprised you have lost weight. 
Sorry if I’ve asked this before but what are you having ie FEC x3 and T x3? 
I ask because I had that regime last time and had no sicky feeling on the T. So hopefully you might be the same. In which case you will only have one more of this to get through.
Sorry I know it’s not much help now, I hope you feel better soon x

Linds7oaks
Member

Re: April 2021 Chemo Starters

Dear all

I am glad to hear that you’re all doing well. Well, as well as we can be in the circumstances… Lots of treatment going on this week-good luck ladies, I hope it all goes really well.

 

I am glad to hear that you’re all doing well. Well, as well as we can be in the circumstances… Lots of treatment going on this week-good luck ladies, I hope it all goes really well.

 

Unfortunately I don’t have good news to report. I’m so fed up and really low. My second cycle has gone as bad as my first. Some of you may remember that I was hospitalised for five days after my first cycle because I was in such a bad way, well after my second I felt even worse. I am now on day eight and still feeling terrible. I feel queasy, nauseous and so exhausted that I couldn’t even contemplate going for a walk. I just hadn’t thought it was going to go on this long. I just don’t know why it’s going so badly for me. I’ve lost lots of weight because I can barely eat although I’m really trying as I know I need to keep my strength up. I have tried all sorts of anti-nausea drugs but nothing seems to do the trick. Is anybody else finding this this hard?

Lindsay x

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Poacher

I know how you feel, my first one was postponed due to not having a heart scan. It’s so frustrating isn’t it. I got myself in a right state as I had built myself up for it and just wanted to get started. At least Friday isn’t too long to wait, Kirsty and I are also having Chemo on Friday so we can all think of each other going through it on the same day. Keep busy and Friday will soon be here. 

Worried now, glad you have a date, enjoy your pre chemo time. 

Hi Kirsty I can’t comment on the hair situation as I am cold capping for the first 3. I probably won’t when I go on to weekly so I’ll be asking your advice then. Glad you had some fun family time, on the beach no less!! The weather has been lovely. Good idea taking a couple of days off after Friday. At least we know how we will be feeling now. I hope Friday runs smoothly for you. 

Steph did you have your second cycle on Monday? How did it go? Hope you are coming through the worst. 

Thinking of you all and sending lots of love xx

 

Poacher65
Member

Re: April 2021 Chemo Starters

Morning All

@KirstyG @Michelle21 

Well chemo cancelled today due to a part of my blood test not been back so now planned for Friday! Going for Pic line today so will post later.

Very unsettling having chemo moved as had got myself all prepared and the bizarre feeling of disappointment was a but overwhelming to be fair. 

Never mind onwards and upwards.

Take care everyone xx

worriednow
Member

Re: April 2021 Chemo Starters

Hello Kirsty iam feeling ok now . My first chemo is on may 13 . Glad to know you are all doing fine. It’s so assuring to be here. I feel worried about temperature muscle pain etc the side effects from time to time . But this forum helps me overcome it . Hugs to all we will fight this . We all can 

KirstyG
Member

Re: April 2021 Chemo Starters

Hi all,

How are you all? It’s just over two and a bit  weeks since my first treatment and whilst I’m feeling good at the moment and knew it was likely to happen, I am now starting to lose some hair! How are you all getting on? 

Hi Poacher - Welcome to the group, how are you feeling about tomorrow? Hope it goes well and just think once it’s done it’s one less treatment. Michelle has given great advice about resting the first five days and enjoying the couple of weeks before your next treatment. I have my second session on Friday. Glad we can all be there for each other and share experiences.

Hi Michelle - I agree living in the moment is a great way to be. Had some lovely family time at the weekend in the garden and a walk and some fun on the beach on Sunday. I am still working in the week but have some time off Friday and a few days after 🙂 Hope Friday goes well for you.

 

Thinking of you all, speak soon. 
Big hugs

Kirsty x

 

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Poacher

I hope you will find this group very supportive, there are quite a few of us here now. 
It’s understandable you are nervous and as you are fairly recently diagnosed you are probably still getting over the shock. I assume chemo is your first treatment, which is the same as me.  I’m sure once you get your first cycle under your belt you will feel much better as you will know what’s coming. My advice would be prepare to take lots of rest for the first 5 days and do lots of fun things in the last two weeks. Also write down how you feel each day as each cycle is likely to follow a similar pattern. 
Share your concerns here and hopefully we will be able to support each other. 

Hi Kirsty

Sounds like you are doing ok, probably sensible to pull back from work on the tough days. I’ve got my 2nd cycle on Friday too. I’m trying to live in the moment and enjoy each day rather than count down to Friday but it’s not easy. I will be having a picc line fitted too but I don’t have a date for when exactly just yet so sorry but can’t help there. Hope Friday runs smoothly for you.

Steph is your next cycle on Monday? If so I hope that goes well for you. 

Hope everyone else is keeping well.  X

 

Poacher65
Member

Re: April 2021 Chemo Starters

Hello everyone 

I'm new to this thread and starting this journey....4 weeks from diagnosis and first chemo session Wednesday 28th April.

Am very nervous but also glad we are getting something into me to kill this thing! A bizarre mix of emotions to be fair.

I would be grateful to chat with you all through this and grateful for advice and sharing experiences. 

Take care all xxx

KirstyG
Member

Re: April 2021 Chemo Starters

Good morning everyone,

I hope you are all doing ok and enjoying the weekend? 

Lindsay, sorry to hear it sounds like you had a rough time of it during your first chemo, I hope you’re feeling better now?

Michelle , Glad to hear you managed a nice day for your Daughters birthday. I too am finding I get quite tired easily, although the first 5 days after treatment I felt generally the worst, since then have gradually felt better. I have my second treatment next Friday, where they will be fitting a picc line, not looking forward to it but has to be done!

I have been working, full time since my first session but decided I’m going to take a few days off after treatment going forward, think it’s for the best.

Steph, how are you getting on? Read your post about looking thuggish with short hair, I do too with my grade one. Think I was more upset though by how grey my hair looks short, my very long thick dark hair appeared to cover most of them before, not sure I can pass them off as silver highlights any longer haha!! Oh well, keep reminding myself it’s only temporary.

I got the Shein wigs, they are good quality but just make me look so different. I’m mainly wearing hats. My daughter is having great fun with the wigs though!

Pips, hope you’re feeling better, I must admit I felt very jittery the first few days but seemed to improve on about day 5.

Bonny, hope you’re feeling better and the pain relief is helping?

Worried now, hope we can support you and our shared experiences will ease our worries together.

Dawn, hope you’re starting to feel better. I found the first five days the worst but feeling like my usual self now. Next treatment Friday.

 

As I’m having my picc line Friday, I was just wondering how those if you with a picc line find it? Is it easy to shower and keep dry? Have you had to buy any special covers?

Big hugs to you all, enjoy the rest of your weekend xxx

Speak soon lovelies

Kirsty x

 

Dawn70
Member

Re: April 2021 Chemo Starters

Thanks Michelle. That’s encouraging to read.

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Dawn

Good to hear from you and that you are coping ok, I found the first 4-5 days the worst and by days 6-7 felt back to myself again. 
Get as much rest as you can and I’m sure you’ll soon be back to ‘normal’. One step closer to finishing.

Michelle x

 

Dawn70
Member

Re: April 2021 Chemo Starters

Hi everyone 

I posted earlier in the thread, I think, before I’d started chemo. I had my first chemo this Monday and have been ok. That said, I’m taking my last steroids in a minute so I’ll see how I am tomorrow.  I was given an anti nausea drug that should have seen me through for 10 to 12 days but in the first night I felt so terrible, I had to dip into the other drugs I was given. My face is currently pink and I can feel drumming in my ears. But I presume that’s the steroids.

best wishes to you all

Dawn

 

Michelle21
Member

Re: April 2021 Chemo Starters

Fingers crossed your second cycle is better Linda, it’s good your unit have listened to you and made changes. I think keeping your hand in at work when you can is a good idea, a sense of normality. 
I hope you continue to feel ok xx

Linds7oaks
Member

Re: April 2021 Chemo Starters

Morning everyone 

I felt good in week 3 of my cycle, thank god, probably helped by the hospital agreeing to reduce my chemo drugs by a quarter and give me stronger anti nausea drugs (aprepetin) for cycle 2. That was yesterday and it all went fine.  I also asked for sleeping tablets as I literally don’t sleep when I am on two doses of steroids a day so they have given me 3 nights worth and I slept well last night. Another improvement!

I am worried I might go downhill again this time. I am trying to be positive but it’s a bit of an emotional rollercoaster! 

Michelle, I am glad you’re finding week 2&3 not too bad. That’s what I am hoping for this time. I am going to try to do a few hours work from home in those weeks just to keep my hand in there then I don’t feel cut off. 

A trip out sounds like a good idea Michelle, to remind yourself there’s a world out there and you can still enjoy it. I might try that too after my second week.

Steph, I love your manta! On the bad days, that will be the only positive so I will try it!

Bonny, it sounds like you really went through a tough time, poor you. I really hope the strong pain killers do the trick.

We shaved my hair as even once it was short, it was all coming out. I am now a patchy grade 2. I am going wig shopping today and am hoping for that just stepped out of the salon look! I am happy being almost bald at home, we’re all used to it but I just want to look normal when I leave the house.

 I had a portocath fitted last week which all went really well. I have to be very careful about lifting for a couple of weeks (poor me, no vacuuming!) and it’s still tender and bruised but it made it so much easier yesterday as I have 4 different drugs (triple positive) so it takes a long time.

That’s all my news for now. Good luck to you all for a good week! Lindsay Xxx

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Steph all good here thanks. Yes I am enjoying the good days. Seems like my first week is bad but then two weeks of good. We are planning a day trip out this weekend to the Botanical Gardens, Wales. I’ve not been before and not all of it is open at the moment but it’s a change of scenery! 
Good to hear time is racing by for you. The quicker time goes by the sooner we will be done with chemo! X

Lovemylife
Member

Re: April 2021 Chemo Starters

Hi All

Sorry it has been a while since my last post-time seems to have raced by.

Hello and welcome to Worriednow, I hope we can help support you on your chemo journey.

Hi Bonny66, I am sorry for the horrid time you had  but glad that they got to the bottom of that pain and you are now armed with stronger pain killers.

Hi Linds7oaks, I really hope your second cycle is better than your first.I do like the idea of compartmentalising it.We all find a way through.When I feel grotty I have a mantra that is:This treatment is helping me live a longer life.Said often enough I seem to believe it!

Hi Michelle, how are you doing?The vegan meals sound great and I hope you have a few normalish days on this cycle?

Hi Pips88 and Kirsty, how are things with you both?

Sending much love to you all 

Steph xx

Michelle21
Member

Re: April 2021 Chemo Starters

Bonny, pleased you have answers and a solution. Often not knowing causes so many other worries. 
We can do this together. I love that, it should be our ‘April thread Moto’ 😆

Bonny66
Member

Re: April 2021 Chemo Starters

Good morning ladies 

Looks like another beautiful day 🔆.. 

Thank you so much for all your replies. it’s lovely to hear how you are all doing, troupers through and through.

I eventually called my team as the pain was so severe I ended up not being able to walk. This resulted in paramedics and then a lovely day out in A and E! Turns out I have old bones! ( degenerative disks) and the effects of filgrastin can be magnified. They were worried as they thought I may have had cord compression or that it had spread.... it hasn’t. I now have strong pain relief should I need it for next time. I now feel fine.

So ladies I’m sending love, hugs and big positivity pants your way. Together we can do this.

Bonny xx

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Linda

Good news you have been able to enjoy some good days, understandable you feel aprensive about the next cycle but hopefully it will be better than the last. I love your compartmentalising technique, I might have to try that when the gremlins creep in. 
Re sleep my steroid dose is quite low on FEC and doesn’t seem to affect my sleep. However I am struggling in general to sleep and wake in the night so have been prescribed something to help from my GP. He has only given me enough for the next few weeks but I don’t seem to need it for wk 1 of chemo as I sleep a lot then, so hopefully I can stretch them out for a bit longer. Sleep just makes life a little easier doesn’t it? And middle of the night thoughts are the worst. 
I hope your next cycle goes well, let us know xx

Linds7oaks
Member

Re: April 2021 Chemo Starters

Hi everyone 

It’s so great to read how everyone is doing then we can all help each other. Sorry you’re going through this again Michelle, that’s so annoying. 

I am also doing well and enjoying the sunshine. My second 3-weekly chemo cycle starts tomorrow and after my last one was so awful, I am dreading it. But I am training my brain to compartmentalise (I just shout “not now!!” internally) so I enjoy the good days and will deal with the bad when they come. I have been feeling really well in week 3, eating well, sleeping well (although I still wake early) and I even enjoyed a couple of glass of rose at the weekend 😁. I also did a few hours of work from home and just loved the chance to be normal. Work are being amazing and totally flexible so I want to repay that by working when I am well. 

Bonny, I was achy with the filgastrin too. Do you have any suggestions? I will ask the nurses tomorrow.

 I have plucked up the courage to see a couple of friends and it was lovely. I feel brave enough to face people now. I have shaved my hair to grade 3 and even that is very patchy 😬. I am hoping to select a wig with the Macmillan hairdresser on Wednesday so I can feel a bit more like me as I had long red hair before. 

Does anyone have trouble sleeping from the steroids? I literally can’t sleep after a couple of days on them and I wondered if anyone had experienced this and been given any suggestions?

Lx

 

Michelle21
Member

Re: April 2021 Chemo Starters

Sorry forgot to ask how you are feeling now Pips? Hope the sickness has subsided. X

Michelle21
Member

Re: April 2021 Chemo Starters

OMG just writ the longest reply to you Bonny and lost my internet then lost the message! 🤬

I will try and sum up what I just put! I first had chemo in 2018 and like you got very achey after the injection, usually for about 3 days. Unlike you I only had one injection not 5. I wonder what others here are doing 1 or 5? This time I was expecting to be seriously achey but wasn’t nearly as bad as before although I haven’t done anything differently. Have you spoken to your team now? I hope they have been able to make you more comfortable and have a solution for your next cycle. 

Hi Worried Now, welcome to the group but sorry you find yourself here. Tell us a bit about yourself. Have you had surgery or is chemo your first treatment? Chemo is my first but unfortunately not my first time. I had BC in my right breast HER2 in 2018 and now I have TN in my left. Yes pretty unlucky I know, but hopefully will get through this like I did the last time and get back to living life to the full ASAP. 
Hopefully we can all support each other through this rubbish time and come out the other side together. 

How is everyone else doing? I actually feel pretty good now. The lovely weather helps as I’ve been for some beautiful walks. Cancer seems to make me see life through HD vision, the smallest thing can seem so amazing. 
Our vegan diet seems to be going well, I’ve invested in a few cookbooks to help me out like Bosh and Dirty Vegan. We were like you Steph and only ate meat a couple of times a week before but after watching all those Netflix programs It seemed like a good change to make. As this is my second time with the C I think I’m grasping at anything in the hope I get through this and don’t have to go through it again. 
After last time with thoughts of life is short I took up Spanish lessons as I’d always wanted to learn. I have my class on Wednesday morning (zoom) so that’ll be a good distraction. I also decided to research and write up as a book my family history and I am going to have a look at that this afternoon, it can be very absorbing.
Are you managing to get any work done Kirsty? How is everyone else filling their time? 

I hope you are all coping one way or another and able to have some nice times 

Michelle xx