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September 2020 Chemo Starters

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Re: September 2020 Chemo Starters

Hi Koukla, hiya I spoke to soon, chemo day and the next were good, then saturday came and it all went down hill, started feeling unwell, and had very bad constipation, started taking the meds, but nothing worked, was in pain and awake for 72 hours, before they took me into hospital, turned out i had a huge blockage, as you can imagine, not nice, was in for 24 hours and they managed to sort it out, I got home and have been asleep for 48 hours, it has also hit me emotionally hard, I thought I was invincible flying through my 1st cycle, then boom!! it can just go the opposite way very fast.  Im seriously having to rethink work side of things.  

What have you ladies done ref work, ive managed to still work full time, but with whats just happened, I now thinking, i need to take care of me, and may take the next 3 months off to do just that.

Well the weekend in near, wishing you all a good one, and tomorrow is a new day, and hoping to feel well better than today.x

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Re: September 2020 Chemo Starters. Hi everyone, I’m one week in and thought I would join in

Hi Tara

 

Thanks for the tip, really helpful,  there is so much to learn.

🌻

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Re: September 2020 Chemo Starters. Hi everyone, I’m one week in and thought I would join in

Hi ladies, 

jumped in from June chemo starters, hope you don’t mind. Good idea with the paracetamol, use it myself, not for cold cap but to help with sinus pain in fec, but be sure to take your temperature  first as paracetamol can bring this down and you need to be well to have treatment, dont want no false readings lol 😝  good luck tomorrow to those having chemo. I have my last one hopefully.

 Take care and sleep tight!

love Tara xx

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Re: September 2020 Chemo Starters. Hi everyone, I’m one week in and thought I would join in

Hi Mary Jane, Good luck for tomorrow. I was advised to take paracetamol 20 minutes before putting the cold cap on, which might help, I hope so. Sleep well.

🌼

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Re: September 2020 Chemo Starters. Hi everyone, I’m one week in and thought I would join in

Know what you mean about needing a spreadsheet! Was very glad when I got to the end of day 5 and my drugs & injections ended. Tiredness for me was worst in first week / 10 says and slept loads, after that better but am now finding that seem to be losing handfuls of hair despite cold cap so not sure how that is going to go. Have next chemo tomorrow and nervous that with thinner hair cold cap will be harder to tolerate. Actually just generally stressing about chemo 2 when I think about it & getting myself in a bit of a tizzy. Will be ok I know but just need to get through it. 

 

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Re: September 2020 Chemo Starters. Hi everyone, I’m one week in and thought I would join in

Hello September starters

I started 4 rounds of EC on 16th September. I was quite reluctant to have chemo, as I hadn't thought I needed to until they found some pesky lymph nodes. I felt surprisingly ok up until  yesterday when things took a bit of a downturn. I’m not sleeping well, and have a stomach ache and feel as if my head is full of cottonwool.  I think feeling  jet lagged describes it best. And very weepy. Oh dear. I nodded off in my Zoom yoga class on Monday evening , and halfway through Bake Off last night. I had so many anti sickness pills and a steroid to begin with I felt I needed a spreadsheet to remember to take them with food, after food, not enough hours in the day!  And then I forgot to put my injections in the fridge, which involved my brother making 2 trips back to the hospital, as they wouldn’t issue replacements till he returned the others. 

I’m a nurse so have a tendency to read about every possible side effect, even though I know I won’t get them all. I’m a bit anxious about covid too, which adds another layer of risk.  Tried the cold cap so am waiting to see how it goes.

The beautiful weather has helped me stay positive and I am very happy to hear any advice and tips and to hear how everyone is getting on. Considering the pandemic on top of everything else,  think we are amazing.

🌼

 

 

 

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Re: September 2020 Chemo Starters

Hi there. I'm Phoebe and I started on 24 weeks of chemo on Friday. This forum is already proving to be massively useful and reassuring so thanks everyone, I really do appreciate your posts! 

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Re: September 2020 Chemo Starters

Hey all

Hope everyone us getting on well. 

Sounds like a bit of a voyage of discovery @koulka. Hope your bone pains are short lived, and mouth heals well soon. Bet you’re rocking the GI Jane look 🙂

Had second treatment today and dare I say I was nearly looking forward to it! Now I’m in the realms of Chemo, I want it done and done as best it can be. Hope this optimism continues once the side effects hit!  Speaking of which, it sounds as though I’ve been quite fortunate. In between general tiredness and a few headaches (which I think we all seem to get) the worst aspect has been a bad tummy which lasted a quite a few days. Been given meds to help control this, and probably explains the weight loss I’ve had this cycle. Having said that, am sincerely glad I’ve been able to scale my work hours down - am sure that has helped me enormously.  

Like you Koulka, I’ve had a few days craving carbs (rarely eat carbs) and cheese.  Strange!  Suffered a bit with a dry sore bleeding nose (lovely!) and rashes/cracked/broken skin on my face which required a very rapid change to skin care. The ‘has she been in a fight’ look has since disappeared (thank goodness!) and back on track now! 

One thing I wish I’d done better during Cycle 1, was to more diligently log the symptoms on each day to better pre-empt proactive treatment this time around. Hopefully what I have logged is good enough. I’ll find out soon enough! 😂

I’m cold capping, and fair to say I’ve had a bit of shedding from Day 17.  Nothing drastic - but definitely more hair coming out when brushing. 

Hope all goes well for those in treatment this week and next. Take care all xx 

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Re: September 2020 Chemo Starters

Hi all, 

Hope everyone is well and everything crossed for those of you having infusions this week. 

@sarah glad you had a nice anniversary and that your 2nd infusion went well hope that's still the case.

I had my blood tests results back on Friday and they weren't too bad but my white blood cells were a little low so needed an injection for a boost Friday pm and then Saturday morning and to call the oncologist if I got a fever. All went fine Friday but woke with a bit of a sore hip Saturday but just thought I'd slept funny. Saturday lunchtime my back was in agony 🙄 transpires I had a good reaction to injection and have ended up with too many white blood cells now which I would have known if I'd called oncologist with sore hip 🤔 at least I'll know for next time. Hair started to fall out Saturday so I'm now supporting the GI Jane look. 

Sore mouth today the roof of my mouth feels really tender and too sore to eat much, anyone else got a sore mouth? 

Next chemo Monday I'm keeping everything crossed I haven't gained weight but like you Sarah I've been craving carbs 😋

Have a good week everyone and would love to hear how you are all getting on.

Take care and stay safe xx

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Re: September 2020 Chemo Starters

Hi Kaukla, thanks!! yes we had a lovelyday, went to Wells and sat on a lovely pubs terrace for a couple of hours watching the world go by, everything seems normal, then in the evening out for a lovely meal, was a lovely day xx.  Sorry to hear you didnt have a good start to the week, Hope your week got better and that you manage to have a good weekend

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Re: September 2020 Chemo Starters

Hiya, well round 2 done and dusted yesterday, they slowed down one of the EC drugs, the clear one, still not up on the names, and that seemed to solve the bad headaches, as woke up this morning feeling fine, no nausea or headache, the only major thing that has happened, is that my hair started to come out last weekend, until yesterday was not wearing a had , but this morning, half my hair came out in one go in the shower, so looking like a very bad plucked chicken, but at least my scalp is not sensative now, i shaved my hair off last sunday to a number 2, and found it quite liberating to walk around with such a short style.  I did want to share it to a number 1, but lucky I didnt as others having chemo with me, who are some treatments ahead, said that they had been advised not to go to 1, as it itirates the hair folicules, which sort of makes sense, and that some people have ended up with sores due to it, so glad I went to 2

How are you girls doing on the hair front? Im sat here with my light cotton night cap on, which also is acting as hair catcher, as its everywhere at the moment, but its quite warm.

Well I managed to put on 2 pounds since last chemo, not good, but just been craving carbs and marmate since 1st chemo.

Well still no cake in party bag yesterday, I did drop a hint , but nothing 🙂 will keep trying even if just a kit kat, wishing you all a good weekend x

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Re: September 2020 Chemo Starters

Hello whitmic4 & welcome.  

Sorry to hear you've had a couple of rough days but good not so bad now. Not on taxol but will be on Herceptin when I get to my fourth cycle (on FEC T).

Am feeling on the up as I get to the end of first cycle but not looking forwards to next week when it all starts again starting with bloods on Monday morning. 

 

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Re: September 2020 Chemo Starters

Hello all, 

little late as we are nearly half way through the month but I started 12 weeks of Taxol last Thursday alongside Herceptin 3 weekly. Felt ok initially but hit me Friday/Saturday with tiredness, aching, headache. Thankfully I’m feeling better today and feel I’ve turned a corner! Anyone else on same treatment? Hope everyone else is doing ok xx. 

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Re: September 2020 Chemo Starters

Hi Koukla

Sorry to hear you’ve had such a rotten week and glad you’re through the other side.  Sending hugs for a good week ahead xx 

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Re: September 2020 Chemo Starters

Hi all,

Hope your all doing ok and symptoms are at a minimum. My week wasn't good I really suffered with the nausea and the headaches 😥 due to me having chronic fatigue syndrome and irritable bowel my sleeping and my tummy haven't been great either...but I'm out the other side now thank goodness.

Totally gone off coffee and no smelly foods near me please. Anyone else finding stage cravings or things they can't eat or drink? 

@mrs Kettlebell I am so glad you got you KitKat..word is spreading 👏#sarah happy anniversary for yesterday I hope you managed to have a nice time despite restrictions. 

Hope everyone has a good week. Bloods for me this week to see if I need to start injecting. 

Take care all xxx

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Re: September 2020 Chemo Starters

Morning All

Just seeing how everyone is doing today?

@kazza81 - hope your first pre treatment appointment went well this Saturday.  I asked about exercise when I had my PICC fitted as keen to keep going if possible: was told no swimming, if you do weights start very lightly, but could do walking, running, usual gym stuff/classes no problem, just need to give the PICCa few days to settle down. 

@nikki49 - thanks for much for all the info. Was really heartening to read both your advice, and know that you are through the process and fighting fit. 😊

@sarah50 and @koukla - had my PICC line fitted earlier this week, and returned to the ward to be greeted by a cup of tea and A KITKAT! Word has spread!! 😂

@sunnyoutlook. Amazing job with your weight loss. Sounds as though you’re doing great things! 💪 I also put on weight during lockdown, have exercised everyday since diagnosis however small an effort and been watching what I eat - and 24 pounds down so far. It seems a few of us are on the exercise trail and be good to hear how everyone is getting on.  Getting used to each cycle seems to be key - at the start of the week I was so tired my husband was dragging me round our usual evening walk route; two days later, I’m back on Couch to 5k 😂

@yorkshire_defector - thanks for your words too. Gave me a bit (lot!) of encouragement to stick to healthier habits.

@MaryJane - hurray the first one is done! Hope side effects continue to be minimal.  I asked my GP about flu jabs before treatment started, and he seemed to think our group would be in the first call up but had no dates. 

@sarah50 - can hardly believe it’s coming up to round 2 for you. Hope all goes well - you know what to ask for in your goodie bag!! 😂

Good luck to anyone starting next week. xx

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Re: September 2020 Chemo Starters

Hi SunnyOutlook

Juts wanted to reassure you that given you've done so well on your weight loss so far that, with some willpower, you'll be able to manage your weight throughout chemo.  I started EC Sept 2019 and took the cancer journey as a kick up the ar5e to lose some lard & get fit...and succeeded!

Apart from the week after EC I was able to walk, go to gym & cycle, my appetite was ok, not the usual glutton standards that I normally achieve, but could eat healthy stuff with no problem...interestingly (luckily?) I went off booze and pizza...think that helped me lose 5 stone between then & now.  Be prepared for end of chemo as you may find that you get really sluggish, I did, but it passes within a couple of weeks.

You've done really well so far, don't let this cr4p put you off your stride!

Sam

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Re: September 2020 Chemo Starters

Re flu jab, yes you should have it but time it within a day or two of chemo xx

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Re: September 2020 Chemo Starters

Hello ladies. Just checking in. Day 9 post chemo (assuming day 1 is chemo day itself?). No major side effects & pleased no sickness but have felt "off" and tired / bit shaky on and off for last 3 days & bit of a dodgy stomach . No temp, nothing major & still managed to work part days from home but had take breaks & have slept lots. For once am listening to my body and stopping when I need to. More energy today - but bit of a sore throat so watching that. Not sure how I can catch anything when I haven't gone out!

What are you all doing about flu jabs? My GP called and said I should arrange one?

SunnyOutlook - gold star for slimming world success!!

 

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Re: September 2020 Chemo Starters

Hi Kazza81

I don't know the medical answer to your question, but I am sure your nurse would be happy to answer if you send them a message or call them.  I had all my tests yesterday ready to start EC on Tuesday.  I am going to get a port, but not before then as the guy is on holiday until Monday. 

On the exercise/weight front I am also anxious.  I started on Slimming World in May after ballooning in lockdown (and before if we're being honest), and got back into daily walks and alternate days yoga/cardio. 4 months later, 4 stone lighter, I am now worried about not being able to exercise as much and/or not enjoying food, and/or being offered biscuits and chocolate during chemo or by well meaning friends, and/or steroid weight gain, to undo all the good stuff I have done so far.  I have had at least 1lb off every week, even through diagnosis and surgery, so I completely understand how this additional feeling of out of control is affecting you, I feel the same.

Good luck - sending hugs

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Re: September 2020 Chemo Starters

Morning Koukla, great to hear you are doing good. Like you Ive been relatively well, do have a funny tummy at the moment, but nothing else, energy levels are high, no nausea or bad headache, as I did for the first 5 days, so counting my blessing.  Please say Thank you to your Doc on behalf of all, that is so nice of him, Im seeing mine on Tuesday, as next Chemo is on the 17th. It seems to have come round quite fast, just hope Im as well as I have been for the first one.

Ref PICC line and exercise, I am doing 2 workouts a week with a trainer at the hospital, been told its fine to work in the gym with my line, just not to play racket ball games, anything that is high impact and lots of movement on the arm.  It has taken nearly a week for my body to get use to the line, had problems with the plasters they use, getting very itchy, but 3rd time lucky, and they have found some super antiallegenic plasters, and all is good again.  

Ref Netflixs, only have this, Im hooked on married at first sight australia on E4 every evening at 7.30, lol

Well Ive been in isolation at home for the last week, hoping to venture out in some good weather this weekend, wishing you all a great weekend. xx

 

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Re: September 2020 Chemo Starters

Good evening ladies, I just popped in to wish you all the best and hope the side effects are minimal.

i started fec-t chemo on 10th September 2013, yes 7 years ago today 😊

My diagnosis was triple negative, macromets in one lymph node so I had to have an mx & a full axillary clearance.

I had a portacath for chemo delivery - if you can, get one fitted.  They remove it after chemo, it's left a little scar about an inch long which sits nicely under my bra strap.

my tip would be to drink at least 2lts water day before, day of & day after chemo.  Take every tablet they tell you to take, if you leave it till you feel sick it could be too late....😬

Stay away from people during low immunity (each drug is slightly different so ask your team when it is) be scrupulously clean and stay away from anyone who is unwell, the last thing you need is for chemo to be delayed due to illness 

I've since had reconstruction surgery and my other breast reduced to match. Despite being over 50 I now have the boobs of a 20 yr old, every cloud & all that 🤗

Im not gonna lie it was tough going at times but the support you get from each other will see you through - I'm still in contact with a few from my group.

You will get through this and in a few years time it'll just be a nasty memory.

anyway I've waffled on long enough

take care x

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Re: September 2020 Chemo Starters

Hi everyone. 
I had my lumpectomy and node biopsy (which came back negative) in July and I’m due to start my chemo too this month. I had my first oncology appt on Tuesday, and was told that I will be having 6 x EC-T and Herceptin injections. I have my ECG next Tuesday and hopefully any day now I will get a phone all to tell me my first date of treatment and other pre appointments.(All I know is that 1st one will be a Saturday)
Feeling anxious and really silly that I can’t get the thought that it’s gonna come back somewhere else in my body.

With the PICC line, does anyone know if it’s ok to exercise with one in? I’m starting to feel very fat and useless at the mo, and worried I’m gonna explode. Had some complications with the healing of my wound and so haven’t been able to do anything. One are just will not heal x

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Re: September 2020 Chemo Starters

Brilliant! Thank you so much. Will look those up later 🙂

After 3 days of feeling remarkably well, I’ve had a couple of days of tiredness, dull headaches, stomach cramps and diarrhoea all of which has conspired to feeling washed out. Biggest issue has been the stomach issues which, I hope, are now improving 🤞. Had no sickness at all yet which was my biggest concern - a thousand hurrahs for that! So far, so good 👍

You mentioned a jab... I had one too on the day after Chemo. It was one self injection and was ok to do (from someone who’s not great with needles!).   

Take care and sleep well tonight x

 

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Re: September 2020 Chemo Starters

Hi Mrs Kettlebell, thanks for your message, I'm just about to head to lie down now so will add more ideas tmrw but an easy to watch one of my favourites on prime is 'this is us' and the other one is New Amsterdam. Have a look and tell me if you are interested in these types of things but my husband and I love them both.

Are you still managing to stay symptom free? 

Take care xx

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Re: September 2020 Chemo Starters

Hi Koukla

Great to hear from you and hear it went well.  Laughed when I read about your KitKat - you’ve got your oncologist well trained. I must have words with mine! Hope all goes well over next few days for you. Sounds as though you’re well prepped.  

I don’t have Netflix, but we do have Prime, and would also (cheekily!) be interested in any recommendations. Downloaded Sewing Bee from the BBC iPlayer which won’t last me long! 

And hello to Mrs ET and SunnyOutlook - please do let us know how you get on xx 

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Re: September 2020 Chemo Starters

Hi Koukla

Great to hear from you and hear it went well.  Laughed when I read about your KitKat - you’ve got your oncologist well trained. I must have words with mine! Hope all goes well over next few days for you. Sounds as though you’re well prepped.  

I don’t have Netflix, but we do have Prime, and would also (cheekily!) be interested in any recommendations. Downloaded Sewing Bee from the BBC iPlayer which won’t last me long! 

And hello to Mrs ET and SunnyOutlook - please do let us know how you get on xx 

 

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Re: September 2020 Chemo Starters

Hi all

1 down 5 to go...it all went smoothly with no problems I can expect to feel rough from Wednesday for a week. Feel a little nauseous now and know I need to eat something but not sure what....anti sickness tablets to take for next two days (only if really desperate as it will cause added issues to my constipation) blood tests next Wednesday and then possibly will need to self inject to boost white and red blood cells. Not sure my husband will be up to doing it for me he is scared of needle's and even more scared of hurting me 😂 (so am I) all in all a good day.

Oh and I didn't get cake BUT because I had told my oncologist about all you lovely ladies and that none of you had got cake he did actually come to my room with a KitKat 😂😂😂 it will probably be put on my bill 😳 but it gave me a good laugh and thought of you all. How is everyone coping with symptoms?

Welcome to the newer members of the group will be interested to know how you all get on.

Sarah50 have you got Amazon prime? Or just Netflix? I'm trying to find some things for you to watch but all my good stuff is on Amazon 🤔 

Take care xxx

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Re: September 2020 Chemo Starters

Hi There.

Just spoke to oncologist for the first time, so far have been dealing with Breast Specialist/Surgeon.  I had a Wide Local Excision and Sentinel Node removal on 19 August, and even though its gone for a second opinion we are full steam ahead for chemo starting later this week or early next.  4 cycles EC and 4 cycles Carboplatin/Paclitaxel.  Just waiting for the phone to ring for the chemo nurses with appointments for all the pre-tests.  Whilst I wouldn't wish this on any one you, it is nice to know I am not alone....

 

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Re: September 2020 Chemo Starters

Thinking of you today Koukla. Hope all goes well.

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Re: September 2020 Chemo Starters

Welcome to the party MrsET. Think it's tough for partners as care and support is focused on us and due to covid they can't even come to appointments with us so very much on the outside. Still early days for me as chemo before surgery so think we are still in the "reeling" stage. For me hubby has thrown himself into taxi service and carer role to give him something to do - but has found most of the carer support aimed at people older than us who need more care themselves so doesn't really feel right for him.

Hard to manage your own journey as well as others.

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Re: September 2020 Chemo Starters

Hello All,

Bit late to the party but seeing as there's no cake there's been no urgency! 😉 

I'm due to get started with chemo in the next couple of weeks. Im getting my start date tomorrow. Its been really useful hearing from those if you who have started already. A friend of mine has just recently gone through it and has given me a few pointers. I'll type them all out another day for you all.

One of the things I just wanted to speak/ask advice about is regarding my husband. He's falling apart with anxiety and its starting to really do my head in. He's always been prone to anxiety and its part of him but since my diagnosis its getting worse and worse - understandably. The thing is is that i don't deal with things in the same way and am feeling really good post mastectomy and lymph node cearance and in this window before chemo starts. Im just starting to feel a little resentful towards him about it all. He speaks to his mum who is great and has been through all the macmillan and hospital support and has a buddy and is certainly not afraid to ask for help or talk about his anxiety.

I'm not sure what I'm after really, I think i just needed a moan! 

Anyway, hope everyone has a good day xx 💗 

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Re: September 2020 Chemo Starters

❤️Sarah, always check everything with your team ❤️they know your individual journey so are best ones to advise you always ❤️ and they want you safely through ❤️💕💕Shi xx

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Re: September 2020 Chemo Starters

Hi Shi, yes you are totally right, do not want to put myself at risk, may end up having a take away at home and save the celebrations to later x

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Re: September 2020 Chemo Starters

Hi Sarah, please check with your team about going away, they will be able to give you advise on safe to go away or not and what measures to take if you can go away, you can also ask them for guidance for rest of chemo too ❤️There is the ask the nurse and the number to ring on here too. Everyone’s different during chemo it’s not a one size journey fits all ❤️ Main thing is to get safely through, having stunts in casa nhs during chemo is not where you want to end up if you get infection ❤️ Please keep safe 💕💕Shi xx

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Re: September 2020 Chemo Starters

Good day Ladies, hope you are all feeling well,  I have a questions... was told to be sensible ref social distancing.. ie.. not go shopping or enclosed spaces, at the moment just isolating as im on day 10, so from day 7 to 14 im totally shielding, did go out early this morning for walk, but not seeing anybody in the house or actually anywhere else, not even my partner, as we dont live together, and he goes into the office to work.  How have you guys been dealing with it? the reason Im asking its out anniversary next saturday and want to go away on saturday night the 12th,  stay in a nice gastro pub, I will be 5 days before the start of my next chemo, part of me is saying stick to rules and should be fine, but othe other Im scared, and I dont want to go through the next months being scared all the time to actually live, and do things, I dont want this BC to rule my world, I know its happening but I want some normality in all of this,  Ive been lucky with my 1st round, side effects have been minimal, and now Im actually feeling better than I have in a long time, would love to dress up and enjoy an evening out.  Any advice would be great, well wishing you all a lovely weekend and any recommendations for netflixs will be much appreciated , big hug xx

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Re: September 2020 Chemo Starters

Hi MaryJane

Great to hear from you - been thinking about you this afternoon and glad to hear everything went smoothly today. Rubbish party bags, eh? Koukla’s got the right idea setting suitable expectations up front! 

Whilst maybe not the news you wanted to year from the MRI, it’s good to hear they are following up so quickly. Hope your scan goes well tomorrow; will keep fingers crossed for you.  

Day after, for me, has been symptom free so far, plenty of energy which has been used productively doing housework! Taking advantage until the post steroid/treatment flag sets in - lol!  Hope you have a good few days too 😊.

@koukla - all the very best for Monday. You’ve got this, and we’ll be thinking of you xx 

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Re: September 2020 Chemo Starters

Hi Mary Jane

Glad all went well today, no cake in your partybag either 😳 I'm going to call the oncologist and make sure I get some in mine 😂

Fingers crossed all goes ok with your scan tomorrow and you don't have to wait too long for the results.

I'm not having the cold cap bit I have been told I will be there longer on Monday due to talking through lots of things with oncologist before treatment. 

Hope you get a good night's sleep and continue to feel good.

Take care xx

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Re: September 2020 Chemo Starters

Hooray I am home. First round done and 5 to go so on the way.

Also found was not as bad as I expected. Took 5 hours. FEC treatment for first 3 cycles so cocktail of 3 drugs & wee is now bright red but warned about that. Went for cold cap and found bearable. Blanket really helped but wished I had thought of a scarf as neck was very cold especially where tube from cap - ended up with towel wrapped around neck. Chin streak was also uncomfortable.

My party bag just antisickness drugs (2), steroids and bone marrow injections ....and lots more leaflets. So again guess all different and depends on treatment and where you are.

Slightly bad news is that MRI scan has picked up possible problem with lymph nodes which biopsy had previously come back on as ok so have to go to the breast clinic for another ultrasound tomorrow morning. Had hoped for a break from scans at but not to be so fingers crossed will feel ok to go and taking comfort from your posts Sarah and Mrs Kettlebell that side effects not too immediate.

Good luck for Monday Koukla. If you don't go for cold cap will be much quicker.

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Re: September 2020 Chemo Starters

Hi All 

Sarah I'm so glad your feeling good that's great news and glad all went well for you Mrs Kettlebell I thought of you today but you beat me to sending a message. I can't believe you both got party bags with no cake 😳 how rude is that 😂

I think your both right in the fact it's the unknown and that once the first session is done we can all just get on with dealing with it.

Had my heart triplex on Monday and they found a slight heart murmur (I'm assured it's nothing to get alarmed about but they want me to have a triplex every 2 months) covid test this morning and now I'm ready to go. 

I hope everyone continues to have a good week and MaryJane I hope all goes well for you tomorrow. 

We have this ladies 💪 I'm sure we can battle through together on the good days and the bad.

Take care xxx

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Re: September 2020 Chemo Starters

Hurray for feeling better Sarah - long may that continue! 

Great tip about the anti-sickness drugs. I’ve logged it, just in case!

Take care xx 

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Re: September 2020 Chemo Starters

Hi MaryJane

It looks as though different hospitals and health authorities have different guidelines - interesting to see!

Are you ok with the self isolating?

I too found the waiting hard. It’s a really strange mix of wanting but not wanting treatment to start. I’m hoping once we’re into our cycles of treatment, things will settle down. You’ve also had a lot of appointments in a short space, So hopefully from Thursday, more time to focus on you. 

Will be thinking if you tomorrow. Hope it all goes well xx

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Re: September 2020 Chemo Starters

Chemo 1, Day 2 of 2 

A super straightforward day - few standard questions from the nurses then straight in with the IV. I had Docetaxel and Carpoplatin p, arrived at 9.30, finished by 13.00.

I had the cold cap and, dare I say, it wasn’t nearly as bad as I thought. Developed headache towards the end, but this subsided to nothing once the cold cap was removed. I was REALLY glad of my fleecy blanket and a scarf to help keep warm. 

Prescribed steroids today and tomorrow, not really noticed any side effects so far. Advised to take last ones by c2pm to reduce problems sleeping. Have a self injection tomorrow to help boost white bloods. Otherwise, like Sarah, have been sent home with a ‘goodie bag‘ including mouthwash and anti-emetics, just in case of need. 

Feeling alarmingly well right now - off for a walk and to make supper. 😊  

Have been forewarned to expect a dip in a few days once steroids have warn off, and any effects of chemo set in. I’m keeping positive!!

Appreciate everyone’s treatment, experience and reactions are unique and this is just mine, but hope this helps give a wee idea to those starting this month. 

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Re: September 2020 Chemo Starters

Morning Koukla,

morning, feeling a lot better today, yes got given a party bag, but no cake, lol!! they gave me all the different drugs I would need, for constipation, the runs, steroids, mouth wash, so yes came out well prepared.  Ive sort of figured out now, if I take an antisickness before going to bed, it helps when I wake up, as today feeling fine, so will keep to doing that.  

Good news you got your start date, I tell you its the unknown that makes us worry, but you will see, once you get started all will be good.  I have my next one on the 17th of September, at the moment the strangest thing is how my scalpe is feeling, it feels alive, no hair loss yet, but feels very strange.

Well good luck with it all, and let me know how you get on, catch up soon xx

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Re: September 2020 Chemo Starters

Hi all,

I have been told I need to isolate/shield from when  chemo starts so can't leave home apart from medic appointments.  That said need to protect mental health too so have been told can go for walk outside as long as keep away from others and definitely no shops or crowded spaces.

Told today too will need to self inject for 5 says post chemo - this was news to me so haven't fully taken in. Think something to do with stimulating bone marrow? Anyone else having to do this?

Am both dreading Thursday start date and just wanting it to get started now. Had echo heart scan today and CT scan tomorrow. Oncologist today told me need to make appt with GP for blood tests before cycle 2 but when I called GP they said won't do so that doesn't help.

Good to hear how you are finding things Sarah, hope ok with you Mrs Kettlebell & will be thinking of you for Monday Koukla.

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Re: September 2020 Chemo Starters

Thank you so much Mrs Kettlebell that's great news. Hope you had a nice weekend and all goes well for you this week xx

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Re: September 2020 Chemo Starters

First Chemo Day 1 of 2 - just in case this is helpful to anyone! Sorry posting is a bit long...

My first Chemo session has been spilt over two days to monitor my reaction to the drugs. Today I had Herceptin and Perjeta. Tomorrow I’ll have Docetaxel and Carboplatin. 
 
Today has been straightforwards - no immediate effects (none expected, but still good news!). It took about one and a half hours for treatment to start once the usual health questions had been asked, canula fitted, etc. The first infusion took one hour, the second ninety minutes. Herceptin calls for six hour monitoring from the time the infusion starts, so a bit of hanging around before I go home. 

Things I was glad I brought with me:
- Painkillers - I’d given myself a headache before we even started! 
- Water bottle topped up - to make sure I got my 2 ltrs a day!  
- I was given lunch but packed some berries and nuts to snack on. 
- Tablet with a stack of TV and films downloaded.     
- Phone.   
- Fleecy blanket - first thing out of the bag! It wasn’t cold but where I wasn’t moving around it helped keep warm (warm socks would also have worked).
- Comfy clothes - I’ll come onto the cannula later, but given one arm was hooked up to a drip, and I was drinking a lot of fluid there were plenty of trips to the loo! The ability to manage this single handedly with easy to manoeuvre clothes was useful!!   
- Shoes that were easy to slip on and off for numerous trips to the loo!! 

Other things:

Cannula - I have small veins and delicate skin (apparently) which resulted in a bit of a struggle to find a suitable point for the canula. Am also a bit wimpy about needles etc so this part of the day was the least fun (though minor in the scheme of things). We’ll have the same tomorrow.  Weighing up the pros and cons for me, I’ve opted for a PICC which will be fitted before Chemo no 2. The Macmillan site has good info about about the different options. 

Medication - I’ve been given steroids and anti sickness drugs to take home in readiness for part 2 tomorrow.

The nurses have been brilliant - super helpful, good fun and really patient with all my questions. They’ve gone out of their way to make the process smooth and comfortable. 

Wishing everyone going through treatment, or about to start, very best wishes xx 

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Re: September 2020 Chemo Starters

Hi Sarah

Glad to hear all went with your first session. Sorry too to hear you’re feeling rotten now, and hope this passes quickly.

Look after yourself and feel better soon xx

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Re: September 2020 Chemo Starters

Hi Koukla

I’ve been told no need to isolate, but be careful and apply good common sense. I’m fortunate where I and Mr Kettlebell can both work from home, and recommended this continues through Chemo. Advised could still shop, but recommended to go during quiet times or, better still, home delivery. Meeting others ok - recommended outside, ideally, and in small numbers (1s and 2s) with usual distancing measures etc in place.m; and to avoid anything that might result in cuts such as gardening or DIY projects! x

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Re: September 2020 Chemo Starters

Hi all can I ask has anyone received any advice on if you need to isolate while having chemo due to the Coronavirus? I don't start chemo till next Monday but am just a bit worried about seeing my son's and daughter in law and most importantly my 15 month old grandson. Has anyone been told anything or are we just all using common sense? 

Thanks in advance