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November 2019 Chemo Starters

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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  

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Re: November 2019 Chemo Starters

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

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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

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

Member

Re: November 2019 Chemo Starters

Definitely worth getting then xx thank you xx 

hood you’re doing well now xx

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

Member

Re: November 2019 Chemo Starters

Thanks for the  tip re travel bands, 

 

hope you’re doing ok xx 

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

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 

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

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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

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

 

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

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).

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

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

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

 

 

 

 

 

 

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

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

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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

Member

Re: November 2019 Chemo Starters

Met with one of the chemo nurses who was lovely. 
There were four couples together and she talked through in depth about ALL side effects from sore gums to life threatening ones. 
Over and over she repeated DRINK FLUIDS. 

Feel slightly more prepared for tomorrow now. 

Member

Re: November 2019 Chemo Starters

Hi Christine, glad I was able to give you a bit of reassurance. My consultant didn't make a big deal of it, just said chemo would sort it out. I did have a CT scan afterwards, but it wasn't until 6mths after I'd finished radiotherapy because my onc said if I had a scan too soon it might show up things that weren't really there because of scarring after radiotherapy. I must admit I did find the wait quite stressful, although my onc was always very reassuring that there would be nothing to worry about xx

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Re: November 2019 Chemo Starters

Thanks so much Jen for responding to my post. My anxiety levels have been of the scale since I found out. It's good to hear that the chemo shrunk it and radio anliated it. Hope mine goes the same for me. Can I ask did you have a scan after to show that it had gone

 

thanks

christine xx

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Re: November 2019 Chemo Starters

Hi northernsky 

I just wanted to see how you are getting on? I know you had treatment day before me..how are you dealing with any sideffects, emotions..I know I had a day where I had everyone telling me that I was strong and could do this and I just wanted to shout that I wasn't!! I guess the difference is that I have kids at home so need to say focussed for them. Take everyone's love and use it as your strength

Viv xx

nmm
Member

Re: November 2019 Chemo Starters

Hey there - yep I'm doing fasting to bookend treatments.  I'm on a weekly schedule (pre-surgery to shrink a large tumor and treat 4 affected lymph nodes) so I'm fasting 36 hours before and 24 hours after -  supported fast though - green veg juices, miso soup and vegetable broth.  I did it last week for my first treatment and it was fine.  I'm also getting acupuncture and shiatsu treatments weekly to help with side effects.  Had an outpatient procedure today to get a portable catheter put in just below the collarbone.  I hope it's going ok for everyone!

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Re: November 2019 Chemo Starters

Hi, how are you so far? 

Member

Re: November 2019 Chemo Starters

I meant to say I'm from the Oct'17 group x

Member

Re: November 2019 Chemo Starters

Hi from the Oct'17 group and wanted to send best wishes to you all as you start chemo. One thing that I found that helped me when I had chemo was wearing travel sickness bands whilst having the chemo and for a few days afterwards. I don't know if it was due to the bands, but I wasn't sick at all x

Member

Re: November 2019 Chemo Starters

Hi Chris631,

I'm from the Oct'17 group and just wanted to give you a bit of reassurance about the lymph node in your chest. I had something similar and chemo shrunk it and the radiotherapy got rid of it completely x

Member

Re: November 2019 Chemo Starters

Hi Viv, 

Just wanted to give you a bit of reassurance regarding the bone scan. My onc said that it was just normal procedure when you have chemo (I had a CT scan as well) and they weren't expecting to find anything abnormal. I wasn't told it was because of my age, but it might have been as I was 58 at the time x

Member

Re: November 2019 Chemo Starters

Morning VivMc,

 

Thank you for your best wishes. I don’t think I’ve felt like the usual me for a little while. I’d say I’m on  90% battery power 💪 which is ok. Every little lump or bump definitely makes you feel uneasy. I worry about how I’m going to recognise any potential new concerns as our breasts are different from before surgery. I suppose it’s better to ask the professionals to check if there are concerns, better to say something than not to.

im definitely ready for tomorrow, I had my surgery in September so it’s taken this long to get a definite plan of action together due to waiting for Oncotype results and further scans. Mine is a preventative intervention. 1 in 2 lymph node positive (Micrometastasis only) and positive for Lymphovascular invasion (LVI) so going to clear out whatever might floating around. 

 

Best set wishes to you xxx

Member

Re: November 2019 Chemo Starters

Morning Rachel,

Hope you have a chilled day getting ready for tomorrow. It's a wierd feeling knowing you're feeling fine and suddenly you are actively going to feel worse to make yourself better! Once you start though it gives you that sense that you are finally fighting it...

Good luck tomorrow and hope e erything goes well.

😊 xx

Member

Re: November 2019 Chemo Starters

The nurse that lead our new patient meeting was lovely. They often give you lots of info on paper don’t they, I’ve got quite a collection going on since July...😂 will recycle all of it once this is over. Hope your meeting is informative and best wishes for tomorrow too.

 

I feel quite calm about starting CT tomorrow. I think just focusing on each day has been my strategy since diagnosis. Today is another prep day, washing and shopping 🙃 xx

Member

Re: November 2019 Chemo Starters

Hi I start my pre surgery chemo tomorrow 

FEC-T for 6 months plus denosumab 

I have a single spinal metastasis plus “extensive” lymph nodes affected and the breast tumour is “quite large”

Off to visit the chemo ward this afternoon and meet the team, I expect they’ll have tons more information for me to read before tomorrow. 

 

 

Member

Re: November 2019 Chemo Starters

Hi everyone, 

Hope you are all doing Ok? I had to have another US today to check 2nd shadow in my breast but turns out it was a cyst. I had an US in the same spot as my tumour in Feb where they didn't find anything so radiologist said they might have missed it 6 months ago... 

Anyone else have to have a bone scan ?  I was told it was due to my age ( 50) to check for bone changes due to my chemo treatment for HER + although i am now panicking a bit.

I had a few blips on my lungs too but oncologist was not too concerned about those as starting chemo 1st and said random people who could be scanned could show up the same...

Viv x

Member

Re: November 2019 Chemo Starters

Hi Helen 

im am the same as you had a mastectomy about 3 weeks ago, lobual cancer grade 3 her2 - ER positive. In 1 & 1/2 lymph nodes. Due to start my chemo probably around the 20th or 27th so slightly behind you. Didn't have oncotype as oncologist said it would probably come back as high score. And I learnt today that there have found a pin prick of 1mm slightly suspicious in one of my lymph nodes in my chest so definitely doing the chemo. Same chemo cycle as yours. Are you going to use the cold cap?

Would love to keep in touch to see how things go. 

Christine xx

Member

Re: November 2019 Chemo Starters

Hi just been to see my oncologist today and due to start chemo near the end of the month. I had my Ct scan results today which was fine apart from the oncologist saying there was a slightly suspicious node in my chest where it showed a pin prick of 1mm. This sent my anxiety levels of the planet. She has said if it is related to the cancer that hopefully the chemo, radiotherapy and hormone treatment will get rid of it or contain it. I would like to join the thread for November as I,m not sure what's going to happen and hopefully we can share some tips to help 

 

thanks 

Christine x

Member

Re: November 2019 Chemo Starters

Thank you for your replies, whatever I try and find effective I will share with you. I know some things work for some and not others. I managed to get everything on my list today. I took notes from others who have shared ideas which has helped me organise things. I have not been in this situation before like the majority of us. 

Best wishes to all xx

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Re: November 2019 Chemo Starters

Hi Rachel.

Welcome to the forum. Sounds like you are getting everything ready. I have never heard of eyebrow wigs!! You must tell us if you find some.

I have heard about fasting but I am not sure how evidence-based it is. I am planning on eating healthy, fresh home cooked food and drinking lots of water. 

If you do try fasting please tell us how you get on. 

Good luck for Wednesday, we will all be rooting for you xxxxx 

 

Member

Re: November 2019 Chemo Starters

Hi Louie,

I too have IBS, and sorry to hear about the Osteo, at least they can monitor that with your bone scans and help you as needed. Yes Her+ is long haul chemo and really daunting  but it's made treatment alot more succesful. I am feeling really woozy still but trying to do stuff around the house. It is windy and cold and the idea of going for a walk is not tempting me....

Let us know how you get on with Oncologist. 

Viv x

Member

Re: November 2019 Chemo Starters

Hi

i am in the same boat. Her 2 pos. Chemo before surgery to shrink. I’m petrified of the chemo as I have severe osteoarthritis and IBS so not looking forward to the side effects. Seeing the oncologist today so will

know more. 
Good luck on your journey. Sending massive hugs 🤗 xx

Member

Re: November 2019 Chemo Starters

Hi I’m Rachel. 

I start chemotherapy on Wednesday, I’m having 3xac then 3xT 

im going to donate my hair to the princess trust-not sure when to cut it though I know it has to be within a week really.

not sure what to do about my eyebrows- I think you can buy eyebrow wigs too 🙂

im painting my nails a dark colour- I read this helps keep them in good condition

today im going symptom relief shopping-got some boots advantage points so going to take advantage.

yesterday I read some articles on fasting prior to and after each chemotherapy session, is anyone else considering this? 

Best wishes to you all xxx

Member

Re: November 2019 Chemo Starters

Hi Viv,

 

when i had trouble ' going ' i bought low sugar liquorice,  took a small piece twice a day and by day 3 things were on the move !!
worth a try maybe for you and of course drink LOADS.... 

Minimad xx 💖💖

Shi Community Champion
Community Champion

Re: November 2019 Chemo Starters

It’s usually people from your make up counters in boots and Debenhams etc that take you on the look good feel better session that you can book through your local Macmillan. If you are unable to get on for months, if you are able to pop down explain you could do with a bit of tip and they usually are able to advise on products and what to do. Also a lady who has alopecia does good tutorials on YouTube how to do brows etc. Hope this helps 💕💕✨✨shi xx

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Re: November 2019 Chemo Starters

Hi everyone, I've had to come to hospital as no poop for 3 days. Since it's Sunday couldn't speak to Oncology nurse so oncology helpline referred me to hospital...thought I would just be told to get laxatives, ho hum.... 

At least managed to grab sandwich on the way.... 

My daughter has promised to paint me nice eyebrows so hoping she'll do a good job, ha ha.

Great idea that you can take your son to the Chemo unit and visit with you Flou.

Yes, speaking to other people going through the same thing is a great thing, even if you just want to read and not contribute. I probably talk too much as I am  biology teacher and used to being quite matter of fact about everything....

If I start annoying anyone please feel free to tell me to shut up....

Keep up the spirits girlies

Viv xx

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Re: November 2019 Chemo Starters

Hi Flou

It sounds like we will be Chemo twins...it is great that you are getting a tour first with your child (a bit like a tour of the delivery suite before giving birth, I suppose).

 

You sound like you are really organised, and have lots of great ideas to make this journey better. I have never heard of a MacMillan consultation at Boots! If they can teach me to draw my eyebrows back on without looking like a pantomime dame then I may have to enquire.

 

Member

Re: November 2019 Chemo Starters

Welcome Jen.

 

You sound like you are living in a similar timeframe to me re treatment. Great to hear that things are going well so far.

I think for many of us, it is the initial fear of the unknown, so it is always really reassuring to hear people are doing well on the other side.

 

How is everyone responding in terms of appetite, nausea, eating and taste?

Member

Re: November 2019 Chemo Starters

Hi Viv,

Hope you’re doing well today.

Its not me having the PICC line but Helen, my set up sounds pretty similar to yours.

We (me & my son) go for a meeting at the chemo suite next Saturday so I’ll hopefully know more then including when I start, I’m expecting around 15th.

I’ve not cut my hair shorter but will be shaving the minute it starts to go.

I’ve gone fully organic at home now and have a list of supplements too which I’ll check out with the nurses first.

I’ve got my first acupuncture session tomorrow which I’ve read can help before & during chemo. I’m also going for a Macmillan beauty consultation in Boots as I’m useless at all the stuff!

Rest up today xxx

Member

Re: November 2019 Chemo Starters

Hi All, 

This is my first time posting on this forum. I was diagnosed with BC in July of this year, i had mastectomy in September with reconstruction at the same time. No complications thank goodness. 
I had my Picc line inserted last Tuesday, which wasn’t to unpleasant, although my arm was sore for a couple of days. 
i had my first FEC chemotherapy (first of 3 followed by 3 taxel, in 3 week intervals) on Friday, no major side effects to speak of so far, fingers crossed it will stay that way. 
I was given a fantastic box of kindness from chemo hero on Friday Which was a fantastic surprise and filled with lots of things to help through chemo, I am sure this is a local charity (I live in North Devon) 
I decided not to have cold cap, as didn’t feel it was for me, so had my hair cut short a couple of week ago in preparation for chemo, I was given a prescription for a wig, and have now ordered one in preparation of losing my hair! 
Best of wishes to all starting treatment this month. 
Jen

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Re: November 2019 Chemo Starters

I am having 8 cycles with normal chemo drugs then 18 cycles with herceptin, targeted treatment. Not sure if I could cope with keeping it dry for a whole year....i guess if veins stop working that would be a option. With HER + they recommend chemo before surgery. Also my tumour is 6cm so pretty huge... so shrinkage def best option and treatment suppposed to reduce risk of reoccurring...

Anyone else started chemo?

Viv xx