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starting chemo March 2015?

136 REPLIES 136
MAC66
Member

Re: starting chemo March 2015?

Thanks Jets and Tweasel

Thanks for the encouragement.

And in answer to your question, Jets, the mx is planned for the end of the chemo, which felt like good news to me because I can have an immediate reconstruction that way I think. Although the plan has chaned a few times already so I'm not taking anything for granted!

 

Tweasel
Member

Re: starting chemo March 2015?

Hi Mac66. Just wanted to wish you good luck for tomorrow. I have completed my 3 FEC and had my first T plus Herceptin last Thursday. The apprehension before the first chemo is horrible because you don't know what to expect, but like you I was just relieved to finally get started after weeks of investigative tests. After each FEC session I did suffer from nausea and indigestion for the first day and then a day of aches and pains followed by a few days of a sore mouth. In my experience, the first week after the FEC chemo was not pleasant but manageable, followed by two weeks where I felt really good. Everything seems so daunting at the start of the journey, but lots of us are travelling the same road and helping each other along the way xx
JETS
Member

Re: starting chemo March 2015?

hi Macc x please join our facebook group as you will get lots of help support and will see lots are coping really well xx I think that the unknown is scary but once you have done first you will feel much more confident x I read the top tips too but honestly think the main thing is to drink lots before and continually after to help flush it all out xx you will probably never me more cared for and monitored then when u are on chemo xxx couldn't work out if you had mx following not clear margins? Hugs and will be thinking of you tomorrow x sarah
MAC66
Member

Re: starting chemo March 2015?

Hi everyone

I had had it confirmed that I am starting FEC-T on Monday. I found the lump on Jan 1st, have had a WLE - where they couldn't get a clear margin, lymph node removal on one side, CT and bone scans (both clear thankfully), so I am relieved to finally be starting. But also nervous about which of the long list of possible side effects I am going to face and how well I will face them. I read the 'top tips for chemo' thread but it scared more than reassured me so I am going to take one step at a time, and just learn to deal with whatever happens - probably with the support of this forum!

Good luck everyone

x

JETS
Member

Re: starting chemo March 2015?

satine - thank you much for your post . I've had a rough ride chemo one ; vvv sick week one blood transfusion week 2 and spent yesterday at hospital getting intravenous antibiotics now have daily injections to do to try to increase white cells .... Awake in the middle of the night as don't think my body knows what's hit it x it was lovely of you to take time out to remind of light at end xxx many thx xx
satine
Member

Re: starting chemo March 2015?

Hi everyone,

This is my first post here.  I finished 6xFEC a couple of weeks ago and just want to give all you ladies who have just started/just about to start their chemotherapy journey a huge hug.  I was diagnosed last October aged 39.  I can't deny that chemo is really tough, but please be assured you do get through it and there is light at the end of the tunnel.  I was quite lucky, and managed to work all the way through my chemo (apart from 2-3 days after each infusion), because I categorically refused to give in to it.  There wasn't a day throughout the 4-5 months of treatment where I wasn't suffering from one side effect or another, but it was manageable.  For me, the worst side effects by far were the nausea, the terrible taste you had in your mouth for the first 10 or so days after treatment, and the mouth ulcers which lasted from around days 10-14.

Jets - I noticed on one of your posts that you are going to get Emend for your next treatment.  For me, that drug was an absolute godsend!  I was violenty sick for 3 days after my first chemo, and was prescribed this for the following treatments to help combat the sickness.  I was never sick again throughout the rest of my chemo, athough I did have horrendous boughts of nausea thoughout.

The worst thing for me to deal with at the time was losing my hair - I was completely distraught.  I shaved mine off completely before it started falling off as I wanted to save myself that trauma.  I refused the cold cap for 2 reasons, the first being that I didn't want to put myself through any more hell than I was already going through and, second, if I was going to do the chemo, I wanted it to blitz everything, including my scalp!  Although I lost a lot of eyelashes, I managed to hold on to about half of them (although I had to hide my mascara during chemo), and I managed to hold on to my eyebrows until just before number 6 when they started to fall out.  Although I still have a few noticeable eyebrow hairs, they have gone very, very thin and I can't wait for the re-growth to start.

Although chemo is horrific, and really takes its toll on us both mentally and physically, just remember that it's not the enemy, it's your friend.  As hard as it is, it is doing it's job, as if that is how it attacks the healthy cells, then just think what it's doing to the bad ones.

Much love to you all, stray strong, and focus on the finish line.

xx

JETS
Member

Re: starting chemo March 2015?

Just checking in to see if u ok Eileen xx
Sarah
JETS
Member

Re: starting chemo March 2015?

Hi Eileen -

Please use the messaging system here - click on my name and send personal message. I've had a message from you but not the information I need!  You then need to type your personal email address - I cant pick it up from the forum messages.  I will then email you directly the link to the FaceBook page - I think you will find lots of support there.  There are lots of people different ages and from all over the country and some at the same hospital and near you.

 

Awful worry about the medication - hope this gets sorted.  I had a blood transfusion yesterday and feel LOTS better today!

 

Sarah

stocko123
Member

Re: starting chemo March 2015?

Thank you sarah
evs_71
Member

Re: starting chemo March 2015?

First session today and was ok.  Only problem was I was delayed as they didn't have the right bloods done, so they took some and I was to go back after lunch.  When I went back, they realised they had made another mistake and still not have the full complement they needed, so an urgent sample taken and a few tears and expletives from me, before I finally got underway at 3pm.  Apart from a funny feeling in my nose, I felt no ill effects......... so far 🙂

Gemmac
Member

Re: starting chemo March 2015?

Hi Eileen, did you speak to the hospital? What did they say? Have you joined the Facebook group yet, I remember talking to you last week as my mum was starting chemo on same day as you. She has joined the group on Facebook and said it's a really nice group and a lot easier to use than this lol x
Feistlet
Member

Re: starting chemo March 2015?

Hi Lena2, just search March Marvels on Facebook and you'll find us. The cover pic is a mountain. Hope to see you there xxx
Lena2
Member

Re: starting chemo March 2015?

What do u have to do to get on The Marvels as I do not have a clue. Anyone taking Domperidome - it sounds a bit like champagne, wish it was. As I am over 60 on the information leaflet it says it may be associated with heart rhythm disorder and cardiac arrest if taking doses over 30mg per day. I am 74 (but an extremely young 74) and my medication is 20mg 4 times per day. I think they are trying to kill me off now to save money. I cannot wait for the ward to open as I shall be their first caller. Rang the out of hours at Colchester General at 11pm when I read this but no help whatsoever if I was told 20mg 4 times daily that's what I should do. I don't think she could count. That was a good grumble to all my fellow sufferers. Only another 1.40mins until the unit opens😱😰 Eileen XX
JETS
Member

Re: starting chemo March 2015?

You will be very welcome with the Marvels evs xxx Good luck today!
JETS
Member

Re: starting chemo March 2015?

Hi Eileen and Lena

All systems go for you both!

Just wishing you the very best and agree always best to pop questions to your unit - I phoned at 2 am when throwing up once and they were amazing.

S

Lena2
Member

Re: starting chemo March 2015?

Hi, started my chemo this afternoon. 1st one lengthy as anti sick pills then a wait of 1 hour before chemo drugs given which took about 1.5 hours then going over which pills to take on which days and for how long. I am going to do a chart so I don't mess up. I already have some concern about something I have to take for 5 days with 4 doses a day which equates to 80mg and have just read the possible side effects and for my age it says over 60 should not exceed 30 mg daily as there could be heart damage or cardia arrest. I shall be on the phone first thing for clarification. The chemo is nothing to worry about quite relaxing reading my book. Good luck and we can post during our treatment to see how we are doing. Eileen X
evs_71
Member

Re: starting chemo March 2015?

I've requested to join your facebook group March Marvels if you don't mind 🙂

evs_71
Member

Re: starting chemo March 2015?

Hi.  I had appointment with my oncologist toady to discuss my chemotherapy. Cancer was confirmed a couple of weeks ago and I've had all my scans to exclude spread.  He told me they would give me 3 lots of FEC and 3 lots of D.  He said that they like to do heart scans first, which could be done next week and start chemo the following week. I said,I'd had enough of waiting and just want to get started.  I am fit and healthy and run regularly, so he agreed that they didn't really need to do it, so instead organised an ECG, which was done right away and then he told me I could start chemo tomorrow!!!!!  Yikes - it's real.  A bit of a shock, but it means one step closer to kicking cancer's butt!!

JETS
Member

Re: starting chemo March 2015?

Yes ! We are the mountains xxx
Gemmac
Member

Re: starting chemo March 2015?

Is the cover photo on Facebook of mountains? Not sure if I have found the right group x
JETS
Member

Re: starting chemo March 2015?

Hi Deborah - I can't message you as I don't think you have enabled messages yet? Hope you are feeling ok ... If you search March marvels on facebook hopefully you will find us otherwise I need to email you the link but would suggest you send me your email through private messages for privacy rather then on this direct thread xxxx hugs xxx
JETS
Member

Re: starting chemo March 2015?

hi stocko - unfortunately ( but understandably) the forum aren't allowed to promote links to other sites - if you private message me your email I'll send you the link. I think others have found it by searching the name on face book too x shout if you don't get linked up xxx hugs
stocko123
Member

Re: starting chemo March 2015?

Hi all

can someone send me the link to the facebook march marvels xxx
Gemmac
Member

Re: starting chemo March 2015?

Hi can you please send me a link to the group please, my mum starts her first chemo tomorrow so I will join her up thanks
Deborah49
Member

Re: starting chemo March 2015?

Hi blakie 

            I'm new to this but it looks like we are at the same stage of are treatment 

Deborah49
Member

Re: starting chemo March 2015?

I'm a newbie can i join fb group
Deborah49
Member

Re: starting chemo March 2015?

Hi I'm getting fec as well my first treatment was on 10th March I just am amazed how well us women except and move through this scary stuff and it be absolutely worth it when we come out the other side xx
Deborah49
Member

Re: starting chemo March 2015?

Hey all just done my first Fec 100 on 10th March this is my first post on here.
And it's really great to be able to share and learn from others what to expect I was diagnosed on the 26th jan then on 4th Feb I had surgery so far iv got through everything better than I thought I would. Like other's going for first chemo I felt nervous and yes that evening I felt sick and was sick. But again not as bad as I was expecting once I'd been sick I felt fine went to bed and slept great I hope the next 5 all go like this
Here's hoping 😉
JETS
Member

Re: starting chemo March 2015?

Hi stocko - hope you feeling ok today x
Sarah
Welshgirl-1
Member

Re: starting chemo March 2015?

Hi, I'm hoping to start treatment soon. Was diagnosed on feb 20th, They've changed the plan a few times, chemo first then op first, then last week they wanted to do a sentinel node biopsy first and as a bonus they whacked a picc line in as well. So waiting for the wound to heal and then hopefully chemo!! Will send a request to join the fb page, cheers for all the lovely comments, it's nice knowing your not alone, xxx
stocko123
Member

Re: starting chemo March 2015?

Hi had my wig fitted just before my first chemo which was yesterday. They bring quick a few wigs with them for you to try. I have choice one that is almost identical to my own colour and hair style.
Feistlet
Member

Re: starting chemo March 2015?

Thanks Sarah

I will request to join the group today and check out those drops - sounds a much better alternative than painting finger and toe nails!

My girls are doing first year of A Levels as they're 17 in July - wish I wasn't having chemo during exam season 😞

They're very robust young ladies so hopefully they can maintain their focus whilst it's all going on around them.

Sarah xx
JETS
Member

Re: starting chemo March 2015?

Hi Sarah

im also a Sarah!

I would jump at the chance of 4x anything as opposed to more at the moment - it's amazing how things change so much with the different research and it sounds like you have a really progressive oncologist and that can only be good.  In the future I am sure that chemotherapy treatment will become much more personalised as many of us are probably overtreated a bit with different stuff during this process.

 

I was originally going with dark nail polish but then found out about onicolife drops from this forum and that does seem to be good especially with T (which I think might put your nails slightly more at risk?)

 

If you PM me I can send you an email link.

 

Just ask to be added - its a closed group so only people in it can see the posts.  There are few other ladies with children in GCSE year there also (mine are year 10 so doing some GCSEs this year but I am hoping not going to have too much impact ; Im single mum)

best wishes to you

Hugs 

Sarah

 

Feistlet
Member

Re: starting chemo March 2015?

Hi everyone

I was diagnosed on 5 Feb and had a left mastectomy on 24 Feb and have now been given my chemo start date for next week - Friday 27 March. Rads still TBC one way or the other and Tamoxifen to follow for ten years - it's the gift that just keeps on giving!

Am having four cycles of TC which seems unusual as most others seem to be having six cycles of FEC or FEC-T. My Onc told me that TC x 4 is proven now to be as effective as 6 x FEC so I'm going with her advice.

Am not planning heroic measures to save my hair as I understand TC is fairly certain to see it start falling out after 14 days of first treatment so am just going to embrace the baldness and use scarves and a wig when I need to.

Am going with the dark nail varnish tip in the hope that I hold on to my nails. If anyone has any other tips for TC it would be great to hear them!

@JETS - I too have teenage twin girls - mine are 16! Hope you can send me the link to the Facebook group as that sounds like it will be really helpful.

Thanks a lot, Sarah xx
Lucy_BCC
Member

Re: starting chemo March 2015?

Hi Alicemax and welcome to the BCC forums

Along with the support here, please feel free to call our helpliners to talk any concerns or queries through. Lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

You may find the following information and further support ideas from BCC helpful and you are now able to send and receive private messages, just click on a username and the option will appear :

https://www.breastcancercare.org.uk/treatment

Take care
Lucy BCC


alicemax
Member

Re: starting chemo March 2015?

Thank you, would love to join the March Marvels FB group. Can't figure out how to private message on here but I've just been on Facebook and requested to join. I quite like Facebook, and a closed group that's more private is great. Although I will still visit here too.Woman Happy

JETS
Member

Re: starting chemo March 2015?

Hi Alicemax 

You are very welcome and hope you find lots of support - we have a face book group called March Marvels for  starters in March (end feb early april also) and I have to say its a great place to get support - they are a really fun bunch and have been sharing side effects and helpful advice.

I had my first FEC on 16 and have been v sick but intend to ask for Emend at next chemo.  I had a bilateral mx in January so after chemo 'just' 10 years on tamoxifen.  Cant wait for the next few months to be over.

 

Im up at 3 am regularly ! Ive gone off the dawn chorus and am equally paranoid about infections.

 

If you would like to join the FB group private message me your email and I can send you the link.

its actually easier to use then this forum.

 

Sarah

alicemax
Member

Re: starting chemo March 2015?

Hi all, this is my first time posting. Was diagnosed in Feb and had my first of 6 FEC cycles on the 9th March. Will have surgery following chemo then radiotherapy. It's going to be a busy year! I was admitted to hospital last Friday 13th because I was suffering from chills/shivering and had a low temp. My pic line that was put in on the 9th had started to bleed too. Thankfully I only spent 1 night in hospital, no infection but had  penicillin/antibiotics IV. 

Like other posts I have read I am hungry as a horse! Loving real savoury stuff like Marmite and cheesy things. Rubbish at pacing myself but now the fatigue is coming to meet me I am beginning to listen to my body and be kind to her. 

I am becoming more anxious about being around people, except my lovely hubby! So scared I will catch an infection.  Scared to leave the house at the moment. Hope these feelings will ease over time. I have the rumblings of a cold right now, temp ok in between the hot flushes. Got a fab remote control fan from Argos who is my new best friend. The nights are long, I sleep for about 4 hours max. Watching the dawn rise is my new pastime. But the dawn chorus is beautiful. 

I am a total chatterbox! My posts might be long! Love and hugs to us all 🙂

lolk
Member

Re: starting chemo March 2015?

Thanks for that Sarah! Not used Facebook in ages so need to familiarise myself with it again!

Lorraine x
JETS
Member

Re: starting chemo March 2015?

Hi Lorraine

I've emailed you the link to join the FB group (lots of energy on thereXX) - you should just need to click on it and follow from there but let me know if you have any problemsx

 

Hugs to everyone else who has started etc. Hope all going well today.

Sarah

 

 

Blakie1974
Member

Re: starting chemo March 2015?

I had PICC line insertion and first dose yesterday (FEC x 6). Felt ok to start with but nausea kicked in in the evening, had my back up anti emetics but took most of the night to subside. Woke up at 3.30am but think that is due to steroids. Feeling better this morning but a bit washed out. Heeding advice and have arranged for people to do the school runs for me today!
lolk
Member

Re: starting chemo March 2015?

Hi z, good luck tomorrow - will be thinking of you but you will be fine I'm sure. I think the lead up is often worse. My partner and I were both like two rabbits caught in headlights too at the presentation we had to attend and in fact my other half disappeared afterwards as he hates hospitals and couldn't be in same room when I had bloods done! We don't live together so he has escaped the self injecting - he would faint I'm sure!

I think I have mastered the jabs and use an ice cube before hand and it seems easier?!? Its only for a week post chemo and think they are being over cautious with me having children at home. Are you definitely having them?

The only other thing I have noticed is the urgent need to pee!!! Apparently it causes bladder irritation - great! Oh and the horrid metallic taste ain't nice but a bag of sweets helps that!


I have generally been okay over the past week apart from last night when I woke with soaking bed sheets. Temp was fine but I called the hospital and they think with my age (45) the chemo has brought on menopausal symptoms (ie night sweats) but already??!!

Let me know how you get on. I am going to join the March Facebook as I am struggling with this website! ! Keeps locking me out and can't get back on!

Lorraine x
bushy
Member

Re: starting chemo March 2015?

Hi everyone Smiley Happy

I found out today that i am starting chemo on Friday. I'm having a tour of the unit on Thursday at 4pm then having my chemo Friday at 2pm.

I have joined the facebook group March Marvels as well so will see you there xx

MK15
Member

Re: starting chemo March 2015?

Zilles - asked same question!  if you or anyone else havent made it on FBG yet this is waht you do

 

Click on the name of the person you want to send a private message to, this will open another screen where at the right hand side of the page you will see 'send a private message' click on this and again another page will open where you can type your private message.

 

then ask to be added - hope this helps x

Zizzles
Member

Re: starting chemo March 2015?

Hi Lolk, I start on 10th, next week. The appointment with oncologist yesterday left my husband and I like rabbits caught in traffic lights. There is so much to take on board. Well done getting through your first treatment. Let me know how you get on injecting yourself because I may have to do it too if I don't want to trek over to hospital. I've a feeling there are lots of bad hair days to come, but the thought of lucious hair is appealing!

Z x

Demi49
Member

Re: starting chemo March 2015?

Well done to the brave ladies that have their first dose already.  Hope you feel better than you expected, and respect to you xxxxxxx

lolk
Member

Re: starting chemo March 2015?

Hi Zizzles

 

All went well yesterday thanks and been feeling fine?!?  My dressing table now resembles a pharmacy and I am just trying to remember what to take when!  I am also having to self inject daily for 7 days post chemo to boost white cells.  The district nurse came today to show me what to do so I have to do it myself tomorrow!!!!

 

I tried the cold cap but to be honest I dont think it will work.  They wouldnt allow me to use the Paxman machine as they said it was normally used for longer chemo sessions and wasn't swiched on! So I had to use the cap from the freezer which I didnt feel was cold enough and ended up having it changed 3 times in 1.5 hours.  They told me not to blow dry, straighten, use products, colour during treatment and only wash twice a week max so I am expecting v bad hair days going forward!!  It is just a fluffy mess today and I cant even tie it back as got a short bob cut last week!  If it goes it goes but the number of people I have spoken to (including wig man!) said that hair may grown back lucious...we'll see!

 

When do you start your treatment?

 

Lorraine x

JETS
Member

Re: starting chemo March 2015?

Hi Blakie x welcome and please join our FB group if you would like too xxx
I am also terrified of the sickness as live by myself with teenage twin girls. I've been recommended to ask for emend anti sickness drug - so I'm trying to work up the courage. Reading your post I realise that I haven't had flu jab even and now not sure if I have time as start chemo on 16 ... I think the injections you can't have during chemo are 'live vaccinations' and I don't know if the one suggested to you is one? I'm also doing 6 FEC but not been suggested picc line which I now don't understand as I've had bilateral mx and don't want to increase risk of lymphodema... You CAN do this xxx lots love sarah
Blakie1974
Member

Re: starting chemo March 2015?

Hi, this is my first post on here. Found lump in December and had various tests just after Xmas. Diagnosis came on 2nd January ( yeah Happy New Year and all that! lol!). Had lumpectomy, sentinel node and full axillary clearance on 6th Feb. Saw Oncologist last Friday and had a phone call yesterday to say chemo starting on Monday 9th. FEC treatment, 6 courses. Got the talk and Pre-chemo bloods on Saturday. PICC line being inserted on Monday morning just before the chemo. Bricking it isthe operative word. I know the op was a success and that I am on the homeward run but it is all the side effects that are stressing me. You see I don't do I'll very well. When I was younger, I used to think people were dying when they were vomiting. As soon as my daughter tells me there is a sickness bug at school, I go into panic mode!

Seriously considering cooling cap, even if my hair does disappear, it apparently aids faster re-growth. I'm not too bothered about losing my hair to be honest, it always looks like a birds nest anyway!! As I have said all along, it is better to lose your hair than lose your life!!!

The only thing that is bugging me this morning is that my Oncologist recommended me to have the pneumonia vaccination ( already had flu jab through my work). So I had booked an appointment at the GP surgery but I have just realised that the appointment is for Monday. Has anyone else been told to get it done? Is it possible to have it done oce chemo has started?

Ps I enjoy reading everyones posts. It's good to seem we are all in the same boat but have our own unique experiences!
JETS
Member

Re: starting chemo March 2015?

Hi zizzles - I think you need to enable messages on your account here first - I can't remember how but maybe if you click on your name ? If it's enabled if you click on my name there should be a 'message' area - if you email me your email address I'll send I the facebook link x there's a good crew on FB and its a bit easier then the forum for chat /images 😕 links etc but I exoect there are others who don't use facebook x also we will all pop along here x