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November 2019 Chemo Starters

Nhlanhla
Member

Re: November 2019 Chemo Starters

It's so hard to prepare, so far I have gotten a thermometer, travel bands, protein shakes, Gaviscon. Open to more suggestions. 

Louie604
Member

Re: November 2019 Chemo Starters

Hi

like you I am waiting to start. Mine is 18th and I am really nervous to the point of not sleeping. I guess we all have a huge fight on our hands. 
I have been given some tips for chemo. Travel bands on the wrist are very good for nausea. Wear them at the infusion and after that in between sessions. Gin gin sweets from Holland and Barrett are also good for sickness as is boiling raw ginger sliced up and draining the water to drink once cooled. 
If you need the filigstram injections take an anti histamine tablet after such as Laratadine. This helps with bone pain. 
Start taking your temperature every day before you start chemo to get your baseline temp so that If it spikes you know the difference. 
hope these tips help. Good luck 😉 sending hugs 🤗 x

Chris631
Member

Re: November 2019 Chemo Starters

He Helen 

i have started to build up a basket of things I will need. Some of things I have prepared are the likes that of pain killers, baby wipes, hand sanitizer, soft tooth brushes, sea sickness bands, skin cream, dove two in one shampoo as trying the cold cap, which will hopefully be gental with the remaining hair. It has took my mind off the waiting a little 

 

hope this helps x

HelenofBrum
Member

Re: November 2019 Chemo Starters

Hi All 

I too feel like I am waiting to take an exam I don't feel prepared for. I too am starting to wake at 5am and I am usually a log! 

 

Just reading the book 'tea and chemo' .. I would recommend it as a light, reassuring and positive read.

 

To those on Chemo now to those who are about to start... What are your top tips of things to buy/prepare. I am working until Wed when my PICC is inserted so I have a few days to prepare.

 

Xxxx 

Nhlanhla
Member

Re: November 2019 Chemo Starters

It is indeed a mountain, all the best. 

Nhlanhla
Member

Re: November 2019 Chemo Starters

🙈 It's hard. I will try and enjoy these days before treatment starts 

Debknits
Member

Re: November 2019 Chemo Starters

Like you I waited from 6th September when i initially saw Gp until seeing consultant/tests/oncologist and after seeing oncologist on the Friday 1st Nov, I’m now starting the climb up the mountain. 

rachel43
Member

Re: November 2019 Chemo Starters

I think this entire 'process' has been all about waiting-It is something you kind of get used to. I had to wait from the last week of September to November until there was a clear plan of treatment in place -due to waiting for results and appointments to see other professionals. In the end we made the decision together which made me feel that I had some control of the situation. I was able to work October to November too so that was a good distraction from thinking about it 24/7. Making plans to see friends and family everyday helped me through the waiting time too. I also crochet which is an amazing distraction. Self taught from YouTube 🙂 

Nhlanhla
Member

Re: November 2019 Chemo Starters

Hey, I definitely relate on the anxiety caused by waiting, 😭. I just want to get started already and feel like I am fighting this cancer. Waiting is so cruel. 

rachel43
Member

Re: November 2019 Chemo Starters

Thanks shi for advice xx

I’ve checked my temp every morning like I was told, will up my water intake. I have R.R. number, if the dizziness continues through to tomorrow I’ll give them a call and ask if that’s a usual Side effect. 

Shi
Community Champion
Community Champion

Re: November 2019 Chemo Starters

Keep drinking loads, usually senna from day 3-4 after chemo works, get your anosol and baby bum wipes will help sooth sore botty. Always ring your rapid responses if you feel strange and no temperature just to keep safe, Chemo can mask other things. ❤️Keep safe 💕💕Shi xx

rachel43
Member

Re: November 2019 Chemo Starters

I have been experiencing dizziness and feel lightheaded, feels like I’ve had a few gins but haven’t. Making the nausea worse. Constipated too. Should of started the senna a few days before treatment. Nausea does get better when I’ve eaten, not used to this unbalanced feeling. 

Fingers crossed for a better day tomorrow ☺️ 

Chris631
Member

Re: November 2019 Chemo Starters

Thanks for the replies guys, am walking loads at the moment with my little dog so getting plenty of fresh air. Think I will just have to try and clear my mind and try to relax I know my chemo will come soon enough so will have to just persevere and hopefully my sleep pattern will get better

xx

VivMc
Member

Re: November 2019 Chemo Starters

Hi Chrisy,

The waiting is horrendous I agree, sorry you're not sleeping.... I was lucky enough to take the kids on holiday the week before I started so getting away from it all was kind of drastic action...anxiety is horrendous and from past times when I really had bad attacks just do breathing and counting and focussing on something...easier said than done I guess. Keep focussing on the fact that you are going to start exterminating the monster and walk alot and get as much fresh air as possible, if you can.. find something everyday that makes you smile and think about it when you're trying to sleep...don't go on google!!

Sorry guys I think I have mental verbal overload today...head back under the duvet tomorrow!!

nmm
Member

Re: November 2019 Chemo Starters

Have you tried melatonin?  That might help regulate your sleep - suggest also staying off screens for an hour before you go to bed, not eating anything 3 hours before.  Maybe set up a soothing wind down routine for yourself?  

Chris631
Member

Re: November 2019 Chemo Starters

Hi All 

Sounds like everyone having difference experiences of chemo due to start mine hopefully in the next few weeks as waiting is sendng my anxiety off the scale. Have got sleeping tablets from my Gp as not sleeping well at all, I don't know how many times I wake up during the night. Have tried meditation before I go to sleep and put it on when I wake up but not really helping. Has any one got any tips to hopefully help me get some sleep. Good luck to all going through your treatments fingers crossed for you all. Great to read tips that help will be trying them all 

chrisy xx

nmm
Member

Re: November 2019 Chemo Starters

Yep it's weekly - not sure if that's a good thing (lower doses) or a bad thing (more often) but here that's the option if you want to try to save your hair.  I'm ok-ish this week, pretty weepy though and don't have an appetite for much food.  How are you doing?

Debknits
Member

Re: November 2019 Chemo Starters

Gaviscon soon became my best friend lol 

VivMc
Member

Re: November 2019 Chemo Starters

Ps, I had terrible heartburn day 2 aswell and then discovered gaviscon again.....

VivMc
Member

Re: November 2019 Chemo Starters

Love the knits Deb ❤. Can understand why it's so therapeutic... I tried my hand at it once but failed as in most things I have no patience...x

VivMc
Member

Re: November 2019 Chemo Starters

Oh my word Deb, I can't really begin to comprehend all that you and your family have been through..😔

All I can offer is support and love whenever you need to have a chat on here x

Debknits
Member

Re: November 2019 Chemo Starters

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@vivmc a few of my makes 

Debknits
Member

Re: November 2019 Chemo Starters

Hi vivmc

i was surprised how hard yesterday was (day 2) I didn’t expect to feel quite as rough as I did. Heartburn all through Wednesday night and Thursday. Headache, nausea and tired do very tired lol 
feel much better today  though only about a quarter as rough as yesterday 

 

Deb knits knits a lot. Lol 

It’s been my sanity saviour through some tough times. We lost a daughter aged 28 hours, a son aged 25 years hubby had a stroke 15 months ago and now me! 
So I knit, making a few chemo hats at the moment. Think I’ve completed 3 since Saturday and almost finished my fourth. 

Deb 

VivMc
Member

Re: November 2019 Chemo Starters

How are you doing debnits?

Ps. Do you actually knit alot?

X

VivMc
Member

Re: November 2019 Chemo Starters

You can never prepare your kids for 'your mum's got cancer' and 12 is hard especially with all rhe hormones, does your daughter have anyone outside family to talk to. Up here in Scotland we have Guidance teachers at Secondary that deal with the pastoral side of kid's lives (and as I just found out my kid's teacher  had lymphoma 10 years ago in her 20's!). Anxiety is so very real for them and so much is also going on in their lives (can you tell I'm a teacher, ha ha)... if you want any hints or outside advice please let me know Lisa49...

Viv xx

lisa49
Member

Re: November 2019 Chemo Starters

Hi Viv,

Sorry to hear you’re feeling so rough. How long between treatments? I hope you feel better soon x

Your kids and husband sound great. My youngest daughter has taken it really hard, but she suffers from anxiety generally (and hormones!). Her twin brother on the other hand is just fine.

I’m still waiting for my date to start, which should be around the 26th, so a few weeks behind you.

Take care.

Lisa x

VivMc
Member

Re: November 2019 Chemo Starters

How are you feeling nmm? Are you have chemo on a weekly basis? That must be tough!!

Viv xx

VivMc
Member

Re: November 2019 Chemo Starters

Hello ladies ☺,

How is everyone today? I am on Day 9 and I am seriously wiped. Have only got out of bed to go to the toilet. Lightheaded, a bit dizzy and and oh so aching bones. I guess like bad flu. All dried up with slightly sore throat but no nausea at least. I had to go for a bone scan yesterday which was a major effort, I actually  walked like an ill person, it was a shock. 

I guess everyone is going to go through different symptoms and effects so please don't take mine as the norm! I was warned there was a dip, maybe this is it but sharing might let people know they might not be alone or that they are lucky and by pass bad points!!

Onwards and upwards, at least the sun is shining and I craved roast beef sandwiches with mayo for my lunch

Viv xx

Louie604
Member

Re: November 2019 Chemo Starters

Thanks Viv, I will keep posting. 

nmm
Member

Re: November 2019 Chemo Starters

Had my second weekly treatment yesterday with cold cap and gloves.  Had outpatient surgery on Tuesday to put in a vein access/catheter thing below my collarbone - assume this is like the arm thing you mentioned?  For some reason here they put it on the chest and you can’t shower, bathe, swim etc with it.  It’s quite sore but hopefully be better before next week’s treatment.  

Debknits
Member

Re: November 2019 Chemo Starters

vivmic you’re further along in this journey than me, so I don’t have any answers for you I’m afraid. 
my anti sickness pills were for three days with domperidone for as and when x  

VivMc
Member

Re: November 2019 Chemo Starters

Sorry seem to have chemo brain already!! Meant to say Jencat....☺

VivMc
Member

Re: November 2019 Chemo Starters

Hi debs,

I'm a week after my chemo and still taking sick meds, not sure if that's normal? Does nausea wear off on it's own within the 3 weeks between cycles? I tried sickness bands when I had morning sickness but never worked for me..😔

Thanks for all your helpful comments so far..

😊 x

rachel43
Member

Re: November 2019 Chemo Starters

Glad you managed to get through the first night Debknits. I tried gin gin chews from Holland and Barrett, it helped with the queasiness I was feeling in the afternoon. Resorted to metoclopramide late evening which had good effect. Got a bit of a headache lingering around- I used the white tiger balm yesterday for it, which helped xx

Debknits
Member

Re: November 2019 Chemo Starters

Definitely worth getting then xx thank you xx 

hood you’re doing well now xx

Jencat
Member

Re: November 2019 Chemo Starters

Hi Deb, I'm from the Oct'17 group and I'd also recommend the travel sickness bands. I wore them whilst I had chemo and for a few days afterwards (until I didn't have to take the anti-sickness meds) and I wasn't sick at all and only felt queasy a couple of times, which wore off once I'd eaten a ginger biscuit x

Debknits
Member

Re: November 2019 Chemo Starters

Thanks for the  tip re travel bands, 

 

hope you’re doing ok xx 

JenC72
Member

Re: November 2019 Chemo Starters

Hi Deb, 

I had my first chemo last Friday, I am also on FEC, have you tried travel sickness bands to help with the nausea, I have been wearing them for a couple of days as stomach felt uneasy (if that makes sense!) Hope you continue to have little side effects.

Jen

Debknits
Member

Re: November 2019 Chemo Starters

Well done on getting day 1 done

 

i was day 1 of FEC-T 

not too bad but had heartburn most of the night and nausea, woke up this morning with a slight headache. Nothing too worrisome on the grand scale of things.

 

continue to take care my friend 

Deb 

rachel43
Member

Re: November 2019 Chemo Starters

Morning, 

 

I had my first cycle of EC yesterday. Nurses were all lovely. I used the cold cap throughout my treatment, at my meeting before chemo I didn’t give it much thought when the nurse suggested it, but yesterday they were a bit more persuasive 😂 so I gave it a go, it was ok, not as cold as you think it might be, i guess its purely experimental, the hair might stay or go-so will wait in anticipation. Anyone thinking of trying one I guess you don’t have anything to loose by trying it xx

VivMc
Member

Re: November 2019 Chemo Starters

The kids are doing fine. In their head they just have one outcome. I am quite matter of fact about everything as it's something we all have to face at home. My daughter is 16 and a great help although she works part time and is doing exams (Highers in Scotland) this year. My son is 12 and is doing it in his style, ie trying to help but hormonal brain is not on full beat. Both play sports so keeping them going on normal life is the main plan. My hubby works offshore so has been signed off work so am lucky to have him at home full time to do driving, dog walking, cooking, cleaning....😊 

How are your kids doing Lisa? Think  it hits them alot more once chemo sinks in. I cut my hair off last week to prepare them for my baldness...

Viv xx

lisa49
Member

Re: November 2019 Chemo Starters

Hi Helen,

Thank you for the welcome 😊

My GP was the same and I convinced myself it would be nothing; I am not well-endowed so it’s hard to believe there was something that size in there and I didn’t know. My mum had breast cancer years ago so I have always been a bit obsessive about checking.

I’d definitely be interested in the Facebook groups - are there any you can recommend or is it best just to search? Also interested in what you are doing in the advocacy group if you are happy to share that too?

I know what you mean about the bad dream. I’ve had days where I still feel ‘normal’, then something hits you and it’s suddenIy all too real again.

Lisa x

 

lisa49
Member

Re: November 2019 Chemo Starters

Hi Viv,

Thank you for the welcome 😊

How are your kids doing? Are they coping well/ helping?

Lisa x

HelenofBrum
Member

Re: November 2019 Chemo Starters

Hi Lisa

Welcome to our thread. I too am ILC, and my tumour was 66mm...so very similar to yours. I think ours grow bigger as they are net-like so spread out more. They are harder to detect- my GP thought it was just my breast tissue, but luckily still referred me. It means we are more likely to have mastectomies than those with ductal.

I am sorry it is in your lymphs- I presume that is why they are starting chemo quite quickly. I had a high oncotype which was why I am having chemo (my tumour is an aggressive subtype called pleomorphic). ILC rarely has a high recurrence score on the Oncotype test- which in theory is good, as it suggests they are less likely to come back in the next 10 years. If you want to find out more about lobular, there are some great Facebook groups and some of us are starting a UK lobular patient advocacy group this month.

 

Even though this feels like a whirlwind, and none of us want Chemo- the important thing is that it is going to make a difference to our survival....that is what I keep telling myself anyway (I am still fantasising that I will wake up and this has all been a bad dream).

HelenofBrum
Member

Re: November 2019 Chemo Starters

Hi Northernsky

 

Sorry to hear you have had a bad reaction.

My friend also had issues with the steroids, and I think they adjusted the dosage somehow (I can't actually remember why we are given steroids but I know there is a reason!).

 

Viv being woozy sounds manageable, but lack of sleep and shakiness doesn't sound fun. At least there is recovery time to enjoy...it will be great to hear how you all get on over the next few weeks, especially if you enjoy a period of relative health and happiness.

 

XX

VivMc
Member

Re: November 2019 Chemo Starters

Morning Northernsky 😊.

Glad to hear you are feeling better. Wooziness is really getting to me too but at least I've been able to walk around for small periods at a time!! Got some sea air and fish and chips yesterday which was great..Lets hope this is a period of little more activity for you. Took my last steroids yesterday so will see if any changes today. Def can relate to shakiness and pounding heart... I have some pills to take at night, Levo something, I will check which help me sleep so if you want more info can check for you.

Hope wig appt goes well 😊. Let us know how you get on.

Viv xx

Northernsky
Member

Re: November 2019 Chemo Starters

Hi Viv

 

Thanks for your message, I well and truly fell off the planet for a while there. Unfortunately the treatment hit me hard and today is the first day I’m actually feeling able to function. My cancer nurse thinks I may have had an adverse reaction to the Dexamethasone steroids. Basically couldn’t stop shaking, couldn’t sleep, heart racing and lightheaded to the point of not being able to stand up for 5 days, it’s been crazy. As the steroids are leaving my system I’m finally starting to feel better and I managed 6 hours sleep last night.

 

Very lucky to have an amazing other half and our two teenage boys who have been bloody amazing! So...onwards we go today I’m going to book an appointment at a local salon for a wig consultation and hair cut and then focus on the next two weeks before hell hits again.

 

Hope you’re ok and getting rest xx

 

 

 

 

 

 

flou
Member

Re: November 2019 Chemo Starters

Hi All,

 

Just checking in having read through the latest messages, it’s great to see so much info, tips and positivity! I’m still waiting to get started and so I’m taking my lead from you all.

 

Stay strong ladies xxx

VivMc
Member

Re: November 2019 Chemo Starters

Welcome Lisa,

Mine is also 65mm so always daunting....I am opp to you with regard to treatment but we will coincide with chemo. It is reassuring to go through the journey with others as no one can truly get what you are feeling... I too have 16 and 12 year old and am 50..

Viv x

lisa49
Member

Re: November 2019 Chemo Starters

Hello everyone, I’m new. I’m 49, live and work in West Sussex and have 3 children (16, 12 and 12).

I was diagnosed with invasive lobular cancer, grade 2, ER+, HER2- in breast and 2 lymph nodes. I had mastectomy 4 weeks ago with full node clearance. Breast tumour was 65mm (sounds huge!) and lymph node tumours were 32mm and 14mm. I am due to start chemo in 3 weeks (near the end of the month) - 4 x EC fortnightly then 4 x paclitaxel fortnightly.

I’m feeling really daunted about the treatment... but I’m looking forward to getting to know you all better and I’m glad to have someone to share the journey with.

Lisa x