January 2020 Chemo Starters

[Joemic]

Hi Ladies

I had my last chemo on 8th Aug last year but just wanted to offer some reassurance to any EC ladies. I had 6 lots of EC chemo over 18 weeks and luckily suffered hardly any side effects. When I had the EC only I was absolutely fine (did work out I needed to eat prior to and after the chemo otherwise I got bad heartburn, as soon as I figured that out I had no further issue). I was unfortunate enough to develop phlebitis but got that seen to and it disappeared. My veins did struggle which is a known side effect but I didn't want a port or anything fitted which would have avoided it.

I had Zometa infusions every 2nd chemo and this is when I felt tired for a day or two but recovered well. I kept up with plenty of fluids, gentle excercise and healthy eating throughout both my chemo and rads and compared to others sailed through; mind you I could put up with anything apart from being sick but luckily nothing like that happened.

Please be reassured not everyone has a difficult time and finds it much more doable than they feared.

Fingers crossed any side effects you have are minimal.

Joemic x 

p.s I lost the majority of my hair on day 16 so that's when I had it buzzed very short, didn't fully lose my hair until mid July (started chemo last friday in April) and had a fine covering again by mid Sept and today it is growing really well with a rather fetching chemo wave and is quite thick and approx 2 inches long.

[Frenchie_77]

Hi Julie,

No, I'm not doing the cold cap. I actually live in France and I'm not even sure it's offered here. I've never heard anyone here mention it and it wasn't offered to me so I'm just going to have to brave the baldness. I'm not looking forward to it but do feel slightly better since I chose a wig last week. Good luck for your own treatment.

[Ju72]

frenchie_77

Pleased your 1 st session went well , fingers crossed the nasty side effects stay away. Sounds like your staying strong and positive. It's a journey we all have to take and from reading others stories I gain great comfort from how well people cope with the treatment. I've not yet started mine. 

Can I ask did you try the cold cap ? And if so how did you find it ? 

Julie x

[Frenchie_77]

Thanks jemmalou, yes it does sound like we're in a similar position. Today's chemo session went well for me. Everyone was lovely, it all went smoothly and l was in and out in 2 hours. The nasty side effects haven't kicked in yet so obviously I might feel a bit different about it when they do! Good luck for tomorrow!

[jemmalou101]

Good luck for this afternoon I will be thinking of you @frenchie_77, our pathways see identical ... and you sound like me, the quicker we start the quicker we finish. Just trying to have a positive attitude and we can get thorough this! 

I agree hearing other people’s encounters really help as it does make you realise that there is a light at the end of the tunnel! 

keep strong and keep positive, let me know how you get on xxx

[Frenchie_77]

Hello everyone,

Jemmalou I'm in a similar position to you. I'm starting neoadjuvant EC this afternoon (3 rounds), followed by taxol and herceptin, then surgery and radiotherapy. I also have 2 boys (8 and 11). I'm nervous but just want to get on with it now.

Thanks very much to those of you who have posted positive stories about your treatment, really helps.

[jemmalou101]

Hi ladies.... About to start my EC chemo on Wednesday 8th and thought need to join this group to see if anyone has any hints or tips that can be passed along? 

Am eager to start chemo, know it’s going to be hard but as i am having neo adjunctive chemo 1st and then surgery so am keen to get the ball rolling as cancer is it getting removed just yet!! Anyone else in same position? 

Mine is ER/ PR+ HER2 positive so getting the full treatment (3 x EC, to begin with and then 12 x weekly tamoxifen, endocrine, radiotherapy, the whole hog so to speak!) dreading EC as nurses told me this will be tough, but if I can get through the first 3 cycles the rest will be a breeze! 🤞🏼🤞🏼🤞🏼

I also have 3 young boys (10, 7, 3) and worry how this treatment will effect them too 😢 xxx

[CG11]

Hi Catherine,

I was diagnosed in July with lobular BC followed by surgery in August (left mastectomy and lymph nodes). Chemo (3 FEC and 3T Docetaxal) started at the end of September. My last treatment is this Friday!!

i wanted to share my experience with you. 

Everyone is different, but for me, FEC was not as bad as I expected . The anti-nausea meds they’ll give you work well. I never got sick and never used the optional anti-nausea meds - I just used the 3 days of required meds. I purchased Queasy Drops from Amazon so if I had an edge of nausea, I just popped the candy into my mouth and was fine. I started Oil Pulling with Coconut oil most mornings for 20 minutes and only had 1 tiny mouth sore which the prescribed mouthwash eliminated. (See YouTube video on oil pulling through Chemo). I cold capped, had the big shed between Day 21 and Day 25, but have not required a wig. I have lost over 50% of my hair, but no bald spots - it’s just thin, so now I wear it in a claw clip and nobody at work has noticed.  I purchased Polybalm online and apply to my finger and toenail when I started Docetaxal to prevent nail issues. I may buy 2 more tubes to continue applying after treatments are done since nail issues can occur months after finishing treatment. The toughest day for me was Day 4 of my 1st treatment of Docetaxal - very lightheaded and sore bones. My Oncologist reduced the strength of the 2nd round so it wasn’t as bad. Prepare for Day 4 and side effects hang on for about a week. This included loss of taste, but keep drinking water! 

I’ve been working Monday through Friday throughout except when I have chemo.  I take a couple of hours off every 3 weeks for Oncology appointment and bloodwork and I have chemo on the Friday. Back to work on Monday. It’s a long slog but we will all get there.

Get lots of rest when you can. All the best! 

[LornaJ]

Hi, 

So I have my start date next Monday and they are putting in a port that morning. My Lymph nodes are showing cancer going towards collar bone and a spot behind breast bone but the doctor was very calming. Fingers crossed we can all beat this. Thats good to know re Picc line. 

Lx

[Ju72]

Hi hen20

Glad the picc line wasnt as bad as expected. 

Good luck with your treatment tomorrow.🤞

I'm also new to this forum and yes it takes some courage to post. But we are all going through similar and it's nice just to be able to talk to someone who is. 

Again good luck for tomorrow 

J x

[Hen20]

Hi, I think I’ve found the right place now! I posted a Feeling Scared comment on the general board last week by accident as I’m new to this.

Well today I feel a bit better as I’ve been and had my PICC line fitted this morning and visited the chemo department. I have to say it was better than I expected and as always everyone was lovely. The PICC line took around half an hour to insert and all I had to do was lie on a bed! I had a local anaesthetic injection in my arm and the nurse used an ultrasound to find my vein before covering me in a sterile sheet and inserting a needle in my arm. She then threaded the line in (it’s a lovely purple colour!) and she could see where it was going with a monitor laid on my chest. It was a bit fiddly for her to get it in the right direction and I was just started to worry that she would have to start again when she announced it was all over. I then had to go to x-ray to check the positioning before waiting to be told it was all ok. It’s slightly uncomfortable now the anaesthetic is wearing off but otherwise not too bad.

It was good to see the lounge and cold cap equipment, which I am going to try, before I actually start treatment tomorrow, one less thing to worry about. It turns out that Tuesday is cream cake day!

Hope this helps anyone due to have a PICC line fitted - it was a doddle after everything else and sounded scarier than it actually was. Xx

[Mai7]

Wishuponastar, none of us know how long the cancer was there before diagnosis.  I was underage for routine mammogram so only found a problem when it was about as locally advanced as you can possibly be.  Try and focus on what you can control and that’s loving yourself enough to rest, accept help and attend appointments.  Anything else is a bonus.  Your hair shedding will start to accelerate after your second EC and that will probably be your deciding factor on shaving.  Have you tried lemon and ginger tea or adding slices of lemon to water?  You may need to experiment a bit with flavours to find what helps the water go down but it’s important to stay hydrated.  Check out my blog for some coping ideas during chemo including mind management too: http://lifeafterlola.com/

[Catd2504]

I was diagnosed in October with invasive lobular breast cancer.  Sentinel node biopsy showed spread.  So had mastectomy, immediate reconstruction and lymph node clearance on 5th December.  Saw my Oncologist on Thursday and starting chemo 15th January - FEC-T 3 x FEC then 3 x Docetaxel. I’m going to try cold cap but also getting a wig just in case.

I’ve got two young sons - 6 years old and 20 months.  Worried about coping with them obviously if I end up feeling quite rubbish and also worried about my eldest sons reaction to my possible hair loss.

Guess it’s just the fear of the unknown at the moment! If anyone who has already started has any hints or tips to help minimise symptoms I’d be really grateful to hear them?! 
Catherine xx

[Wishuponastar]

LornaJ, Good luck for Monday. The waiting is awful. x

[Wishuponastar]

Mai7, thank you. That is really reassuring. I am so happy to hear how well you are doing. I had actually been to have a Lymph node checked out in my arm pit about 12 months before I found the lump in my breast. They did a mammogram and ultrasound and reassured me it was fine (no biopsy- it did not go but my GP assured me it would be okay as it had been investigated). This node was removed with my initial lumpectomy and this was diseased. I am just very worried I am a lot further down the line! 

I am on day 6 and actually slept properly last night. I am hoping this will continue now I have stopped the steroids. Yesterday, my temperature was up but not high enough to call the rapid response number but I had no energy. Certainly my worst day. Food tastes very strange. I can not longer find anything I like to drink so am just drinking and everything tastes disgusting. I was told to expect total hair loss from EC so I am now deciding when to shave it. I want to do it before a clump falls out. 

[Mai7]

LornaJ, best wishes for Monday. I have my fingers crossed for you and my toes. There are lots of treatment options which can knock it into remission. X

[LornaJ]

Mai7,

I'm so happy to hear your story, I'm waiting to find out how many of my lymph nodes are actually affected. I can feel three of them up now, the first I know is definitely macrometasteses. The pet scan was to find out for definite if they've gone to the ones behind the breast bone. Roll on Monday. 

[Mai7]

Hi wishuponastar,  it’s a very anxious time but I just want you to know that I had 9/12 lymph nodes with macrometasteses in (actual large tumours in nodes) as well as a diffuse 90mm tumour and I’m still here nearly 3 years on.  Same treatment as you.  Hang in there, you got this. Xxx

[Shi]

Dont forget to book your look good feel better sessions through your local Macmillan’s ❤️💕💕✨✨Shi xx

[LornaJ]

Hi,

The scan was on Tuesday. So the doctors would have the results by now. My husband is great and he's been with me every step of the way. At least my kids will keep me busy over the weekend. 

[Ju72]

Wishuponastar

Oh I'm so sorry to hear your news. It certainly knocks the wind out of your sails when the goal post keep moving. From what I've read on this forum and other peoples experiences , you hopefully will start to feel slightly better in a few days. 

My children are older ( 22 & 16 ) and I'm a single parent but I understand your concern about your children being off school at the minute. Are your children at an age that they can help you ? Or are you putting on that brave face us mums tend to do in front of our children !

Hoping you start to feel better soon, please keep in touch with your journey.  

Take care 

J x

[Wishuponastar]

Lorna, When is your PET scan? I found the waiting the worst part. Now I have started again to be doing something I feel better psychologically. It is so hard though. Can you partner help? Do you have friends and family close. My husband works silly hours but he has told he work and they are being quite good and understand I will not be able to do this all alone. 

[Wishuponastar]

Julie, your situation sounds very similar to mine. I was told lumpectomy with reconstruction and they would take some lymph nodes to test but likely outcome was radiotherapy then hormone treatment. I was devastated when they said I did not have clear margins and all 5 nodes had cancer in. I was also told I would need 8 rounds of chemo, followed by a mastectomy, full node clearance, then radiotherapy then hormone treatment. I had my first chemo on Tuesday and I am doing okay. My my children are off school and this is hard as I feel utterly exhausted. 

[Ju72]

Hi 

I was diagnosed in november with bc and after having a lumpectomy in december. I thought I'd be having radio and hormone and then that was my treatment done. How wrong was I. 

Went back to the hospital yesterday and unfortunately during the sentinel node biopsy they found traces of cancer in both nodes that was removed. So I'm back in for another op in the next couple of weeks and then starting on chemo. 

Not the news anyone wants to hear. I just want to get my life back to some sort of normal but I'm sure we all do. To say I'm anxious about the coming months is an understatement. Sometimes life throws you a curve ball and it's how you catch it that counts. I just wanted to say hello to anyone else experiencing similar to me. Let's beats this together. 

Julie x

[LornaJ]

Hi,

I was diagnosed with cancer in December, I'm still waiting on Pet scan and meet my chemotherapy doctor on Monday, holidays have delayed it all, and I'm told I can possibly start by next Friday by the breast Care nurse, the cancer is advanced but worried the pet scan will show its gone further. The waiting for treatment is hard, I'm so worried it's spreading further. I have an 18month old and a 3 year old and wondering how it's going to affect them, they are still so young and always wanting to be carried.

Lorna xx

[mini mad]

Hi jackson994.

i had a mastectomy in April this year,  followed by 12 weekly Paclitaxel.  Also carboplatin every 3 weeks for 12 weeks. I am now 4 months post chemo.    I had Triple Negative bc.

anything you wanna ask pls do.

good luck for 7th January.

mini mad xx 💖💖

[Wishuponastar]

Hi ladies! I am sure none of us want to find ourselves here but here we are.

I was not sure where to post as I had my first EC chemo yesterday! I have 4 cycles of this then 4 cycles of Docetaxal. I was grade as 2 but they did not get clear margins during my lumpectomy and all 5 lymph nodes also had disease in so I am not grade 3. I am hormone receptive but HER2 negative. My CT scan was clear!

My biggest fear is managing to juggling this with 3 children still in primary school and the hospital is over a hour away. 

My first chemo was not as bad as I feared but I feel utterly shattered and dizzy today. I am one 3 types of anti-sickness meds, with a 4th if needed. So far so good! 

Good luck to all of you on your first cycles. 

[sunnybear]

I am starting 12 weekly cycles of Taxol on Jan 7, following a mastectomy in November. Glad of any support and vey apprehensive of the next few months.

[Noodle101]

I was diagnosed at the end of October with HER2 positive and hormone positive breast cancer, already have had my lumpectomy. My tumour was upgraded from grade 2 to grade 3 after surgery. Starting the first of 6 cycles of chemo on 10 January. Trying to prepare as best I can at this stage 

[Frenchie_77]

Hello!

I was diagnosed with HER2 positive BC at the end of 2019. I'm due to start chemo on 7th January. Starting with 3 rounds of EC, followedby another type of chemo once a week for 12 weeks (can't remember the name). Will then have surgery and radiotherapy. 

I'm both apprehensive about the treatment and keen to get on with it. Dreading losing my hair. I'm British but live France so being treated here.

I've seen what a great supportive forum this is so hope we can help each other through the coming months xx

[Drida]

Good evening everyone:))))

I hope everyone had a wonderful festive time alongside with your family. 
I am due to star AC chemotherapy on 10/01 as adjuvant for treatment for my left breast and neoadjuvant treatment for my right breast, as I have been diagnosed August with IDC left breast and November I found a lump on the right breast, which delayed my treatment whilst further exams had taken place. 
Fingers cross that will

all work: 4 rounds of AC and 4 rounds of Taxol, following by Double mastectomy.

[Mai7]

Hi

👋 

This thread is for anyone due to start chemotherapy in January 2020.  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.

Here is the BCC guide on chemo:

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...

I finished my chemo over a year ago 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.blogspot.com/p/chemotherapy.html

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.

Best wishes xx

[Mai7]

This thread is for anyone due to start chemotherapy in January 2020.  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.

Here is the BCC guide on chemo:

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...

I finished my chemo over a year ago 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.blogspot.com/p/chemotherapy.html

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.

Best wishes xx