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April 2021 Chemo Starters

Blonde67
Member

Re: April 2021 Chemo Starters

Morning Ladies

Hope you are all still hanging in there 🥰 Well done Kirsty and LML for going for it. Sounds like you are both rocking your new look 🤩

Sorry to hear that your first day didn’t go as planned Michelle that’s pants. Really hope all goes ok on Friday. You just want to get this going, as awful as it is, the waiting and delays just add to the emotional rollercoaster we are on.

Pip, good luck with your CT scans 🤞

So I had my oncology appointment yesterday and discovered I’m not getting chemo as I had before, despite earlier discussions appearing like this was the case. Informed I’m being put on Palbociclib (Ibrance) and Exemestane.

Tbh, a bit bewildered and still processing this change in direction. Lots of reflection and will no doubt have more questions. I believe the hope is that the growths found will shrink with this combination and I will be closely monitored to check on progress. I will be getting a ct scan in 3 months to check on progress initially then likely to get 1/2 yearly.

Early days and no idea how this will impact on me or what side effects I will have. Told hair loss is not likely just thinning. Just had a call to set up my appointment for the Ibrance so pick that up on the 14th April from the hospital. The other medication I get from my GP.

So looks like I’m not on the same journey as you guys any longer but still with you in spirit ❤️ Now need to seek out other threads that might help me going forward. Hope it’s still ok to check in here? Still feel very honoured to be part of this support group, means so much to me.

Off to do more searching 🥴 Sending big hugs to you all 🥰🥰

xx

Blonde67
Member

Re: April 2021 Chemo Starters

Morning Ladies

Hope you are all still hanging in there 🥰 Well done Kirsty and LML for going for it. Sounds like you are both rocking your new look 🤩

Sorry to hear that your first day didn’t go as planned Michelle that’s pants. Really hope all goes ok on Friday. You just want to get this going, as awful as it is, the waiting and delays just add to the emotional rollercoaster we are on.

So I had my oncology appointment yesterday and discovered I’m not getting chemo as I had before, despite earlier discussions appearing like this was the case. Informed I’m being put on Palbociclib (Ibrance) and Exemestane.

Tbh, a bit bewildered and still processing this change in direction. Lots of reflection and will no doubt have more questions. I believe the hope is that the growths found will shrink with this combination and I will be closely monitored to check on progress. I will be getting a ct scan in 3 months to check on progress initially then likely to get 1/2 yearly.

Early days and no idea how this will impact on me or what side effects I will have. Told hair loss is not likely just thinning. Just had a call to set up my appointment for the Ibrance so pick that up on the 14th April from the hospital. The other medication I get from my GP.

So looks like I’m not on the same journey as you guys any longer but still with you in spirit ❤️ Now need to seek out other threads that might help me going forward. Hope it’s still ok to check in here? Still feel very honoured to be part of this support group, means so much to me.

Off to do more searching 🥴 Sending big hugs to you all 🥰🥰

xx

Lovemylife
Member

Re: April 2021 Chemo Starters

Hi Pips

How are you doing?Good luck if you get your CT results today-i will be thinking of you.

Thank you for saying how liberating braving the shave was.You inspired me and I too am rocking the skinhead look and I am glad I did so!

Take care , live and best wishes

LML

Xx

Lovemylife
Member

Re: April 2021 Chemo Starters

Hi Kirsty

Hope your pre assessment goes well today-i will be thinking of you.Mine was fine on Monday.Jim the nurse really put me at ease and any questions I had were answered before I needed to ask them! I came away feeling ok and far less scared.

Yesterday, after a long think/fret about hair, I decided to take control and my partner and daughter cut it short and then shaved it-a cm all over now.We took loads of photos and made it a fun experience.It is actually very liberating after shoulder length hair!I already had several hats/caps and scarves so now what I wear is a result of the headwear I choose.Having a shower is so much quicker-every cloud ...!

I am all set for Picc line at 3pm today and chemo 1 straight after that.Jim the chemo nurse said the quantity of EC i am having will take 1-2 hours.I will update you all later!

Take care Kirsty

Love and best wishes

LML xx

 

 

Lovemylife
Member

Re: April 2021 Chemo Starters

Hi Michelle 

So sorry to hear about the delay in your chemo start.How frustrating and annoying and I really hope you start on Friday.I know none of us really want to start chemo but knowing we have to have it, means we want to get started.

Thinking of you today with your scan and hoping everything goes well.Do keep us posted. 

Sending best wishes and a hug

LML xx

KirstyG
Member

Re: April 2021 Chemo Starters

Oh Michelle, I’m so sorry to hear that. You’re right about the emotional rollercoaster! Hope they sort it tomorrow for you 🤞🏻and you will be able to start Friday, same as me. 

I am scared about it but it has to be done. I have my pre assessment tomorrow.

Take care

Kirsty xx

 

 

 

Michelle21
Member

Re: April 2021 Chemo Starters

Thanks Kirsty, unfortunately my day didn’t go too well. The chemo unit realised they didn’t have my MUGA scan as I haven’t had one yet so couldn’t give me chemo today. It really is an emotional rollercoaster. My scan is scheduled for tomorrow and they are going to re do my bloods and hopefully chemo will go ahead on Friday. 🤞 I think that is the same day you start Kirsty? How are you feeling about it? 
Laura did you find out when your start date is? 
Hope everything goes smoothly for you tomorrow LML. 
Pips any news on your start date? 
I hope you are all bearing up ok on this horrible path we find ourselves on xx

How are things with you?

KirstyG
Member

Re: April 2021 Chemo Starters

Hey Ladies,

Been thinking of those with appointments and treatment starting today and tomorrow. Sending hugs and positive vibes your way.

Kirsty 
xx🤗

KirstyG
Member

Re: April 2021 Chemo Starters

Hey LML,

Hope your pre assessment goes well today, I have mine on Wednesday. Big hugs 🤗 

I struggled to choose wigs on Shein as so many choices, plus had to get a blue one as  chosen by my daughter (10). She has loved doing my hair in the past so to try and keep things a bit fun for her I’ve said all along if I have treatment I will get a fun coloured wig as well as a sensible one 💙.

You’re right about the drop in temp and that a bobble hat may be more suitable though! I have got a couple of Beanie hats, but they are more suitable for summer as quite thin material, might have to dig out my winter hats!

Take care and speak soon 

Kirsty xx

 

 

KirstyG
Member

Re: April 2021 Chemo Starters

Hi Pips,

Good to hear from you. I must admit I’m terrified too but having to put a brave face on in front of my family. Big hugs to you 🤗

I’m going to take the plunge and cut my hair the day before my treatment.

I will let you know when my Shein order arrives, what they are like. They have lots of choices on there and reasonably priced too. I have also ordered and had delivered a couple of beanie hats, which are lovely, from a company called Bold Beanies. The back story behind the company was interesting as it was created by a lady who went through treatment.

Hope your CT scan results go well.

Speak soon

Kirsty xx

Lovemylife
Member

Re: April 2021 Chemo Starters

Hi Pips

Lovely to hear from you and I am with you about feeling worried but covering it up about chemo.I start in 2 days and have my face to face pre-assessment today at the chemo unit.I will let you know how it goes-all a new part of this crazy journey.

Good on you for braving the shave.That joy is coming my way this week-just as there us a cold snap!Bobble hat at the ready!

I like the website Shein as it is not too pricy and the 2 wigs I got are surprisingly good for the price.Things can take a while to arrive sometimes but overall I think they are great.

I hope you enjoy the rest of the Easter weekend.

Until soon   LML xx

 

pips88
Member

Re: April 2021 Chemo Starters

Hi guys,

hope everyone is well. 

Ooh never shopped at Shein is it any good?

So I start my chemo Monday 12th, and I’ll admit I’m terrified but hiding it well lol. 

I had a friend shave my hair off on Friday and I’m feeling surprisingly liberated 😂 It was well past my shoulders so I wanted to donate it, but due to me using henna dye I couldn’t so we did some crazy haircuts before the buzz cut. 

Hoping to get my ct results on Tuesday. 

Hows everyone feeling?

pips xx

KirstyG
Member

Re: April 2021 Chemo Starters

Hi All,

 

Hi Michelle,

Thank you for the warm welcome. I’m certainly happy to have found this thread and to have you all to share experiences and support with.

Your weekend sounds lovely, I’m hoping to do similar with my two (10 and 12). It certainly helps that the sun is shining 🌞

Ohhh roast lunch sounds yummy! Enjoy 🥂

 

Hi LML,

Thank you for the lovely welcome and for sharing your experience so far. I am also due to have radiotherapy and hormone treatment, like you but following chemo.

Like you say a long road but hopefully the support we can give each other on here will make things a little easier.

I saw your post about Shein and have had a look. There are some good options on there for wigs. You mention them being good quality, I’ve never shopped with Shein before but think I’m going to order a couple. My daughter (10) wants me to go for a blue one, which I might do just for a bit of fun to make her smile 💙. I’m trying to keep things as positive as possible for both her and my son.

I hope everyone has a lovely weekend.

Take care and speak soon

Kirsty xx

Michelle21
Member

Re: April 2021 Chemo Starters

Oh Blonde Laura thank goodness I thought I was going mad already! 😂 Sounds like you have a lovely weekend planned too, enjoy! 

Pips have you been given a chemo start date yet? 

Happy Easter everyone xx

Blonde67
Member

Re: April 2021 Chemo Starters

Morning Everyone 

No Michelle you are not losing your marbles yet 🤣 for some reason the website changed my username to my own..so cats out the bag...I’m a blonde Laura 😁. Yes not long now for me to be clear about my treatment. As you say not pleasant but done it before so will get through this. Like you planning a lovely Easter weekend with the family with a few 🥂 in between 🥴. Will keep you all posted. Big hugs to you all 🥰 xx

Lovemylife
Member

Re: April 2021 Chemo Starters

Hi Kirsty G

Welcome to the April Chemo starters-a group I doubt either of us thought we would ever be in!I had a WLI and sentinel node biopsy like you, but both nodes had some cancerous cells and 3 out of 4 margins were clear.I had some HER+ cells in pathology so they are treating me as HER2+.I start  6 cycles of chemo on 7th April and then surgery; cavity shave to achieve the final clear margins(hopefully) and auxiliary node clearance and then radiotherapy and hormone treatment.

A long, well-trodden road and I am glad there are others on this forum for support.

I wish you peace and best wishes over the Easter weekend

Love LML

Lovemylife
Member

Re: April 2021 Chemo Starters

Hi Blonde 67

So pleased to meet you, even though we are in the club no one wants to join.I am sure we can all support each other as we go through the chemo ordeal

Wishing you peace and best wishes at Easter

LOVE LML xx

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Blonde67, am I losing my marbles or have you changed your name?! Yes we have ‘spoken’ before on another thread. I’m so sorry you are going through this for the third time, that must be very hard. I know it’s never easy but I am finding this harder than last time. I hope you get your treatment plan when you see your onc on 6th. Let us know how you get on, I hope in the mean time you are able to enjoy the Easter weekend to some degree. 


Hi Kirsty, welcome to the group, yes the terminology does take some getting used to and it’s not a language you ever thought you would have to learn. Sorry to hear you had to have 3 ops but good they did get clear margins. Chemo is an unpleasant experience but doable and we are all here to support each other through it. 
I’m planning a nice Easter weekend with an Easter egg hunt for my two girls who are 23 and 21! Then we will have a lovely roast lamb dinner and chocolate cake whilst I can still enjoy the taste of food! 
I hope everyone here is able to have some happy time this weekend.  Xx

KirstyG
Member

Re: April 2021 Chemo Starters

Hi All,

This is my first post, so hoping I manage to do it correctly.

Thank you for sharing your journeys so far. I hope we can keep each other company during this horrible time.

Things have been pretty crazy the past couple of months -I was diagnosed as Her2 neg in early Feb this year and had a wide local excision and a sentinel node biopsy. My lymph nodes were clear but I had two further operations before my consultant was able to get clear margins, which meant I was classed as grade 3 (Hope that makes sense, I’m still trying to get to grips with all the terminology!).

I’m now due to start chemo Friday next week, on FecT, 3 lots of Fec and 3 lots of T!

I’m planning on cutting my hair just before and on reading your posts I’m thankful for the advice you ladies have shared so far, and I don’t feel so alone thank you.

Kirsty

Blonde67
Member

Re: April 2021 Chemo Starters

Hi Michelle 

Thank you. Didn’t give you my long story before getting to this forum as has met you on another one 🥰 which was so lovely, despite our rubbish situation 🥴

Got my oncology appointment on 6th. 3rd time round for me so mixed bag of emotions but just want to get my treatment started.

Definitely plan to use this forum for support so will keep you all posted. Used the cool cap first time around and it worked for me so will likely use it again this time.

Good luck to all of you guys, we can do this ❤️🥰 xx

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Laura

Welcome to the group. Have you had any surgery yet or are you like me and having chemo first? 
I hope you appointment goes well and you get a start date soon xx

Blonde67
Member

Re: April 2021 Chemo Starters

Hi Michelle 

Just discovered this forum. Pleased you have a start date. That’s my oncology appointment date so will be with you in spirit. Hoping to know soon when my treatment starts. Like you just want to get the process going. Good Luck and take care 🥰🥰 xx

Michelle21
Member

Re: April 2021 Chemo Starters

My start date for chemo is 6th April, I’m pleased because I just want to get on with it. 
It isn’t a pleasant experience to go on and there may be lumps and bumps on the way but it is doable. 
I hope you get your start date soon Pips. 
x

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Pips nice to meet you too, but as I said to LML shame about the horrible circumstances.

Re hair I cold capped last time and these are in my mind the pro’s and cons;

pro’s

you get to keep a lot but not all of your hair. It looks less obvious to the man on the street that you are going through cancer treatment. When treatment is over it’s nice to feel you have some hair left and you’re not growing it from scratch. I didn’t have a problem with the coldness of it.

cons

you do lose hair, and a little bit each day can be demoralising, I ended up with a very wide parting! Sometimes you want people to know what you are going through. A friend said to me she felt her bald head reflected how she felt on the inside. 

Bearing all that in mind I am thinking of cold capping for my first 3 treatments of FEC which are 3 weekly then I go on to weekly pacitaxol and I probably won’t cold cap then. My understanding is FEC is the harshest for hair so although it will continue to thin I may not lose it all. Last time I was on 2xFEC 4xT and my hair started to grow back before the end of T. The nurses may say this is a silly idea but those are my current thoughts.

Thanks for the Shein recommendation they have a real assortment. 

Michelle

 

Lovemylife
Member

Re: April 2021 Chemo Starters

Hi Pips

Yes the waiting is the worst part of it all-has pushed my limited patience to the limit Crossing!!Crossing everything that your CT scan is fine.

You are dealing with a lot with the dye reaction and cording but you sound so strong and full of humour.

With the hair thing, I think everyone's response is different.I am not cold capping-it just doesn't appeal.My 17 year old daughter will cut it off and shave it short once the first bits shed-trying to make it a fun family affair.I have a range of caps/hats/scarves and I have bought 2 wigs from Shein.I am amazed how good they are for the price.I was given an NHS voucher for a wig at my first oncology appointment but the shop is still closed and is in another town.

Enjoy today's sunshine

LML xx

Lovemylife
Member

Re: April 2021 Chemo Starters

Hi Michelle

Yes BC is the club no one wants to join, but when you do there is so much support online if you want to engage.

I hope you get your start date sorted quickly-keep us posted.One thing I have realised is that BC care is fabulous and the NHS staff amazing, but things seem to work differently and at different speeds in different areas and trusts.

Enjoy the sunshine 

LML xx

pips88
Member

Re: April 2021 Chemo Starters

Hi guys nice to meet you.

I’m 32, diagnosed 22nd dec, grade 3 IDC, triple positive. No node involvement but I have a suspicious lung nodule. Just waiting for CT results (ugh the waiting is the hardest)!

I had a therapeutic mammoplasty 18th feb. A month after a failed surgery due to me having an allergic reaction to the blue dye. (My kind of luck lol). But my oncoplasty was amazing and I admire her massively! I’m seeing a physio at the minute due to cording, so appointments are definitely keeping me busy. 

I’m not sure of my start date, but I saw the oncologist last Monday and I’m meeting the oncology nurses on Thursday so hopefully I’ll get a date then. 

I’ll have to have a Picc line too, just for extra fun 😂

I’m going to jump straight in and as you both what your planning with the hair situation?  I have opted out of cold capping and I’m cutting it short on Friday but I’m just unsure when the best time to shave is! 

Best wishes

Pips xx

Michelle21
Member

Re: April 2021 Chemo Starters

Hi lovemylife, nice to meet you although not under these circumstances. Your name is great, I love my life too. 
It sounds like you have been part of this horrible cancer world for a few months now, it’s a horrible place to be but this site can be a real life line. I have found the waiting around the worst, it’s mental torture.

I still don’t have a date for starting chemo. I saw the oncologist on Friday and she made it sound like it would be this week but I rang chemo bookings today and they have said 16th April so I’m waiting to hear back from the Onc for confirmation.  I just want to get on with chemo now. 
I hope we can support each other through these difficult times. 
Speak again soon. 
Michelle

Lovemylife
Member

Re: April 2021 Chemo Starters

Hello to All

I am starting chemo on 7th April. Diagnosed with BC on 8th Dec, lumpectomy and sentinel node biopsy on 26th Jan, pathology showed node involvement and decision to treat as HER2+ as well. So 6 cycles of Chemo, then cavity shave and full node clearance and radiotherapy.A long old road that I plodding along day by day.Pre-assessment on Mon 5th and Picc line being fitted on the morning before Chemo.

I wish everyone starting Chemo well and those of you who have experienced it, have given me lots of information and tips.

Michelle21
Member

Re: April 2021 Chemo Starters

Hi Mai I remember reading your story when I was here in 2018 it was very helpful.
So here’s what’s happened to me....

In March 2018 I was diagnosed with Her2+ grade 3 with lymph node involvement in my right breast. I underwent chemo with herceptin and perjeta and had a complete response. Surgery and rads followed and then tried to move on from it. Unfortunately it wasn’t to be as I went for my routine mammo on 12th march and they found a lump this time on my left side and triple negative. This diagnosis has floored me and I feel so scared about the future. I do know from last time that once treatment starts it all feels a bit better, I am really hoping I will start chemo ASAP. 
I am going in Monday for bloods and they have talked about putting a pic line one because of the lymph clearance last time chemo can only go in on one side. 
We have told immediate family and a couple of friends but I can’t face telling people or talking about it. 
Well I hope I haven’t put anyone off joining this thread, it would be good to have some company here. Xx

Mai7
Community Champion

April 2021 Chemo Starters

Hi 

This thread is for anyone due to start chemotherapy this month.  I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment.  If you have any questions please post away on here and others in the community will watch over you whilst you are getting started.  Once you are into it you'll be pretty good at helping each other.  You can also ask the nurses on this forum if you have any concerns.  In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day and get a thermometer and check your temperature every day.

 

Here is the BCN guide on chemo:

https://breastcancernow.org/information-support/facing-breast-cancer/going-through-treatment-breast-...

 

Here are some apps which can help to keep you on track: 

 

https://breastcancernow.org/information-support/support-you/becca

 

https://www.nhs.uk/apps-library/owise-breast-cancer/

 

https://www.careology.health/

 

I finished my chemo in October 2017 and doing very well again now.  Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:

http://lifeafterlola.com/


If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in.  Your conversations can be a real comfort to others.

If you’re new to the forum, here’s the “Getting Started” advice:

 https://forum.breastcancernow.org/t5/How-to-get-started/bd-p/welcomegetstarted