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May 2019 Start

Member

Re: May 2019 Start

Hi Sewbuddy, welcome to the May group.  I hope it helps you being here.  I am on FEC-T too, just started a few days before you.  Have not found it too bad so far.

 

Mangomum - I'm so sorry to hear about your cat.  Pets are such an important part of our lives.

 

Two weeks after first FEC and my hair has started falling out Smiley Sad  I used the cold cap but I'm not sure it did anything as every time I touch my hair more falls out.   Don't know whether to bother for my next cycle.  On the first morning with hair loss I gave my daughter a lift and on the way happened to see a very stylish lady (in her 30s I would guess), very trendily dressed wearing a lovely turban.  I saw it as a sign and have ordered myself a couple of cute vintage turbans.  I'm looking forward to them arriving.  I figured if I'm gonna be bald I need to just style it out Smiley Happy

Member

Re: May 2019 Start

Hi May Ladies,

I feel a bit of a stalker as I have spent a day reading through the thread! I had my first FEC-T on 13th, I was determined to sail through and not let it get to me, how naive 😁. I have taken great encouragement from reading everyone's reactions and tips etc. Sorry to read that you had to stay in hospital Mangomum, fingers crossed for a swift recovery and how sad to lose your cat at the same time Xxx 

Member

Re: May 2019 Start

Hi, 

This was just my first round so not boding well. Sorry to hear you are having a time of it too! Did they increase your steroids this cycle or change anything? It sounds like a reaction to and hope you have got some advice on what it is /should do.

 

Mangomum 

Member

Re: May 2019 Start

Hello Mangomum

Sorry to read about your cat on top of everything else.

I hope you are managing to keep your spirits up.

I had my 2nd FEC cycle yesterday. I have blown up like a puffer fish - hands, face, legs swollen up.

Hope you are soon able to resume treatment. Have you had 1 or 2 cycles so far or more?

Best wishes

 

Mominette

 

Member

Re: May 2019 Start

So sorry to hear about your cat Mangomum.  Sending love and hugs

Louise

Member

Re: May 2019 Start

Hi ladies, 

I'm still here but my blood count is going up. I need to get to the magic number 1 to be released. On a very sad note my beloved ragdoll cat had to be put to sleep today. She had been unwell and took a turn for the worse. Feel really upset that I couldn't give her a kiss goodbye 😢. It has just made my stay even more miserable but at least she isn't suffering - which was making me more anxious.

 

Love to you all and I will get round to replying to some posts just totally deflated today. 

 

Mangomum 

Member

Re: May 2019 Start

Hello everyone 

 

Mangomum, hoping you are improving and comfortable. Do they think you will be home soon?

 

Joemic, I hope the exam went well today. Given the confidence last week, I hope once he got in there it all came back.

 

Louise, I found the first injection a little worrying but if you squeeze an inch quite hard so the needle has a firm surface, its not too bad....good luck.

 

sending love to all

love Ruth xxx

Member

Re: May 2019 Start

Thank you Hannah Lizzie for the info.

 

How often do you have to have the injections.  I've been told no help, will have to do them myself - eeeek.

 

Do you have steroids too - if so any side effects.

 

Many thanks

Louise

Member

Re: May 2019 Start

I have just seen my name be mentioned! I am more than happy to help/ talk about my experiences of this regime. 

I am half way through now, coming up for cycle 4 on 3rd June. 

All I can say about this cycle, is that I’ve been very tired and shaky. Everyone responds different to chemo, but my body seems to have slowed right down since starting the chemo. I would say I feel the lowest during my first 10 days, then the remaining 11 are usually ok. I try and laugh most days, as I’m grateful it’s being treated and could be a lot worse. 

The regime made me feel very sick and have the runs the first 2 cycles, but my tablets have all been changed this time, and I haven’t had anything! Be prepared for the white blood cell injections, a district nurse can give them to you, but I inject myself. The needles are only small! 

I thought I would mention, I am also on Herceptin and Perjeta every cycle, so some side effects could also be due to these. Hence, everyone is different and responds differently.

Good luck x

Member

Re: May 2019 Start

Hi Louise, I'm not sure on this thread but a lady called Hannahlizzie21 (i think that's her name) on the April 2019 thread is on the same as you, she maybe able to help you with specifics, I'm sure she wouldn't mind helping you.

Mangomum - I hope you had a comfortable night - you've got thisSmiley Happy

 

Stress city in my house this morning, A level exam, bless him he suffers severe exam anxiety, he's a very intelligent young man but unfortunately folds during exams, he's done an extra year in 6th form to resit to raise his grades from B's to the A's he needs for uni, he's done really well, very confident last week but last night the anxieties kicked in and he's a mess this morning. I'm just hoping he can hold out 7 hours revising every day for months has got to help.

Anyway ladies I hope everyone has a comfortable side effect free day.

Joemic x 

Member

Re: May 2019 Start

Hi

Had my first onc appt today.

 

I'm going to be having Docetaxel and Carboplatin.  Anyone else on this regime?  Any tips, comments, advice - many thanks.

Member

Re: May 2019 Start

 

Hi, 

I saw the lead chemo nurse yesterday and mentioned it so they are aware. She thought it might be the start of the menopause that chemo can bring on. It is tapering off now so hopefully it will stop soon.

She also said the infection was probably there since the line was inserted but as my white cells dropped my body couldn't stop the infection. 

 

Mangomum 

 

 

Member

Re: May 2019 Start

Oh Mangomum so sorry to hear you've ended up in hospital but at least they will take good care of you and make sure you're properly ok before discharge. Maybe mention you're heavier menstrual bleed (even if it's stopped now), you might as well since you are in there, get everything all checked out at the same time and fingers crossed you'll only have the one inpatient visit.

Take care, get the rest you need, sending you lots of hugs for a speedy recovery.

 

Joemic x 

Member

Re: May 2019 Start

 

Hi May ladies, 

I'm in hospital 😭. Started to get a rapid heart rate and feeling warm yesterday aftenoon. Took my temp and it was 38.2 so ended up at A&E. On the ward  since last night  and wil be kept in for 48hr observation minimum. The infection has arisen from my picc line which is unfortunately quite common. I'm being well looked after and getting all the antibiotics and fluids I need so fingers crossed I can get over this ASAP.

 

I'll have time to read through all your posts at least while I'm here. 

 

Mangomum 

Member

Re: May 2019 Start

Hi Louise

Hope your appointment went well and you finally know your treatment plan. I think it's a relief in a strange sort of way to finally feel things are moving. I'm sure you'll pick up some good and useful tips as you look through the posts.

I've been much better today but I did learn from yesterday and made sure I ate regular and drank plenty. Back to the Zarzio injections tonight.

Hope everyone has had as good a day as you can and enjoyed your day.

Joemic x

Member

Re: May 2019 Start

I have my first appt with onc in the morning.  Strangely looking forward to it !?!

Keen to find out my treatment plan, what drugs I will be given, and how often.

 

 

Member

Re: May 2019 Start

Good evening ladies

 

Jeeze Kelly, you sure do have it tough at the moment and with your determination I am sure both you and your Mum will battle through this incredibly difficult time. I'm glad you are finding work a good distraction and it will help boost your mental wellbeing - just remember to have a bit of me time!.

 

I was a bit daft today and suffered the consequencesSmiley Sad. I was so busy getting kids off to school, and taking one to stay at a relatives that I totally forgot to eat and only had one small drink this morning. I wondered why I began feeling very grotty by 2pmSmiley Embarassed, when I finally realised it took me a while to get myself rehydrated (I can't drink a lot at a time as it makes me sick) and suitably nourished. Feeling fine again by 8pm. Lesson learnt I will not be missing out on fluids or meals again - well not until after all treatment has been completedSmiley Happy.

 

Ruth I remember catching the pokemon, one day the 2 youngest had hubby looking in the bushes at the local pub to catch them - luckily everyone knows himSmiley LOL. At least that was an outside game, trying to unglue them from phones, xboxes etc is a feat in itselfSmiley Frustrated

 

Wishing everyone a relaxed and comfortable evening with no pesky side effects

 

Joemic x 

Member

Re: May 2019 Start

Dear All

 

Kelly, I am so pleased you are feeling better after your tough weekend. I’m so sorry to hear about your Mum as well, this must be a really difficult time for you all. You do seem to have the most amazing resilience which is what will get you through it ( and us to support where we can).

 

Joemic, you are 2 down and going strong.  I ‘tasted’ metal the second they started using that one, and someone suggested fruitpastles ...but I think mints would be better as they would last longer, so will take some next time.

 

The walking really helps me too (it does help that we have had reasonable weather since my 1st treatment I think I would find this even harder in the winter months. I have 2 young boys who are always up for a walk (providing they can ‘catch’ pokemon enroute😊)

 

45 mins is very good Mangomum, I hope this is still helping you.

 

I hope everyone else is side effect free (mininimal) at the moment and feeling as positive as possible. 

 

Lots of love Ruth xxx

Member

Re: May 2019 Start

Hey everyone, and welcome Mangomum. 

Had a bit of a **bleep**e weekend, really bad headaches, will speak to chemo nurse this Friday. 

Today is the 1st day, I actually felt normal !! Managed 6 hours at work today, yippee. It really does make me feel better about everything. What I haven’t told you lovely ladies is, my mum also has breast cancer. She had her 2 lumps for many years, and didn’t say or do anything about it 😥😥.She became ill on Xmas eve, very breathless, had chest X-ray, and that’s where it all begins. She also has a incurable blood disorder, MF, which is managed every week, with blood and platelet transfusions. She was put on oral chemo, but it burnt her skin. She had a single mastectomy on 9th May, and is doing really well. If only she would eat more though!!! So as you can imagine, my life is quite hectic at the moment. I need to show her that, if I can do this, then so can she. She is lucky that she has my dad to look after her, if any of you read my previous post, I sadly lost my husband 3 years ago, but am lucky that I have my son, Josh to look after me (not that I need looking after, lol). 

 

Sending you all my love

Kelly xxxx

 

ps, am getting my hair shaved on wed xx

Member

Re: May 2019 Start

Glad you are finding walking beneficial, being out in the open air is good even if it is for a short while. A tip my chemo nurse gave me, quite sternly really when I said I walked for 3 miles a day, was to make sure I took some water with me and had a sip regularly, helps stop you feeling woozy apparently. I didn't admit that it never crossed my mind to take any.....note to chemo brain to remember to take some tomorrowSmiley Happy.

 

Whilst I remember another tip I was given, before my chemo started was to suck some mints whilst having the cyclophosphamide part of the chemo apparently some people get a metal taste in their mouth during this and found sucking mints helped. I've done that and can say I didn't experience any after taste of any description - can't definitely say it was the mints that worked and can't it was a side effect I wasn't going to get any way but no matter, I will continue with the mints and hope I never get the metal taste!.

 

I'm pleased you think I write beautifully Ruth but the truth is is takes me ages to write a postSmiley Embarassed but I get there in the endSmiley Happy. I find this thread helps me deal with the depression I'm battling, being able to chat to people who 'get' where you are and how you feel as we are all in it together and hopefully I'll be helping others through it tooSmiley Happy

 

Keep going ladies, we will get through this

 

Joemic x 

Member

Re: May 2019 Start

Hi SP,

 

Took inspiration from your post and got myself up and out for a walk this afternoon around the local common. Felt a bit woozy - but definitely doable so will try and get out every day even for 45mind (that's all I could muster).

 

Mangomum xx

SP
Member

Re: May 2019 Start

Hi all...

Welcome Mango mum. I’m also sorry that you have the dreaded cancer but we are all in this together so let us know if you need our shared expertise....it is growing by the week!! I’m pleased to read that you’re all coping well!! That’s great!! 

 

I am pleased to report that my mouth is calm and pain free so I am able to eat normally!! I’ve had a good week and have managed to do some “normal” things! My garden is planted with summer bedding (even though I had to have a lie down after I’d done it!?) I even went to sing with my a cappella choir on Wednesday. Again, I was exhausted when I got home but I was very pleased with myself for doing it. Singing is definitely good for the soul and I recommend it. Singing in 4 part harmony unaccompanied is challenging but great fun!! 

 

I’ve also walked every day....I’m managing 2/3 miles so I think that’s ok? I definitely feel better after a walk amongst the trees!! I often sing whilst walking?! Mad or what??!! It’s very good for the brain! I’m also following a mindfulness programme so am keeping a gratitude journal. I find that this helps me stay positive, which I firmly believe is half the battle in winning through? You may all now think I’m mad but I will do anything to help myself which does not involve taking drugs?! It’s about taking control.....good for my well being!! 

 

My 2nd  chemo is on Friday, providing my white blood cells are ok on Thursday... 

 

SP

x

Member

Re: May 2019 Start

Dear all

 

I hope everyone is having a reasonable weekend.

 

Joemic, I am so pleased you are 2 down, and still feeling positive, you are a real inspiration 😊. Also your chemo brain doesn’t interfere with your ability to write so beautifully. I was surprised that I struggled with going on the computer/tablet or even watching TV for the first couple of days after the treatment....I used podcasts which were great.

 

Hello Mangomum - sorry you are here, but hopefully it will help you ....it has helped me.

 

sending lots of love to all 

 

xxxx

Member

Re: May 2019 Start

Hi, 

 

Thank you. X

Member

Re: May 2019 Start

Hi Mangomum

 

Of course you are very welcome to join in this group - not that we want to be here but here we all are. Other ladies will be along very shortly to give you a warm welcome. As you read through the various threads you will soon work out we are all at different stages and different chemo regimes but I am sure you will get some helpful tips as you scroll through.

Ask away - we are all here to support each other.

 

Joemic x

Member

Re: May 2019 Start

Hi, 

 

Can I join this group please? I'm new to the boards and still trying to navigate my way round. Started my first cycle of Fec-t last Monday. Hope to share some advice tips and some hand holding too.

 

Mangomum 

Member

Re: May 2019 Start

 
Member

Re: May 2019 Start

Good morning May ladies

 

I hope things are going well for everyone as we seem to have gone a little quiet on here.

 

I've just had my 2nd chemo Friday, felt a bit icky on the evening but feel mainly back to my usual self  this morning. I felt the chemo going in a bit more and my arm was achy so I ended up with it wrapped in a heating bag throughout the session to keep the vein plumped, nothing too drastic, it's the 2nd time they used the same vein so it makes me wonder if it's had enough as I know it can interfere with the veins, will have to wait and see. Apart from that and a fair bit of wind this time, nothing else seems to be affecting me - I hope it continues this way. I didn't have the bisphospate this time, that will be next time, so will be able to see how that affects me then. It's so difficult trying to determine which meds are causing which side effects.

Although I had my hair shaved to a number 3 last Tuesday, I still have a fair amount of hair covering left although it is extremely grey apart from the front and the nape of my neck which is still my natural colour - look a bit like a greying zebra nowSmiley LOL I wear my wig when I go out but prefer to wear beanies or sleeping caps during the day - I presume the rest of my hair will be off by the time my next chemo comes around but will have to wait and see. To be honest it hasn't bothered me anywhere near as much as I thought it would be. I hope my experience can help fellow ladies who have decided not to cold cap gain a little insight to what it can be like. The hair on my legs is still stubbornly there - was hoping that would disappear too which would be a happier side effect but no it hasn't happened yetSmiley Frustrated.

 

Bananabrain - No I haven't had any food cravings apart from wanting to eat the day after my chemo like I did last time. Still find I need to eat full meals rather than snacks though - just hoping the weight doesn't pile on. I eat regular now whereas prior to being diagnosed I have always been an erratic eater, thing that was a remnant from my shift working days when I could go a day or two without eating, not good but that's how it was then.

So pleased you had a lovely meal out with your son, it is so nice to be able to do normal things and I bet your dogs enjoy that too seeing as though they still get their walkiesSmiley Happy. Very glad you seem to have had a relatively smooth journey this time, let's hope it continues.

 

Dapple - Hi and welcome to the forum. I decided, with my onc, not to work for the first 3 treatments just to see how the chemo affected me as I need to be on my toes with quick responses in my job. To be honest like you I have found brain fog a bit of an issue and am now glad I am not working as I may have put others at risk by forgetting things. I suppose it depends on the type of job you do. I find drinking water helps a bit but still not enough to be fully focused. Chemo brain on top of menopausal brain doesn't help that's for sure but hopefully will improve after treatment endsSmiley Happy

 

SP - So glad you managed to find a remedy for your sore mouth it must've been so painful, although I haven't had that I'm def going to store your tip in case it does happen. Glad your feeling more yourself and taking it easy - bedding plants that sounds like  work to meSmiley Very Happy I bet you'll make your garden lovely - I'm just jealous because all I do is cut and strim my grass as a result of a football mad son who wrecks any flowers in the garden as he accidentally! kicks the ball on them - so grass it is for the next few years, I don't mind though as you never get these days back. Hope you continue to improve and enjoy feeling back to normal - apart from the darned chemo brain that is.

 

Ruth - Glad your energy levels are improving, those first few days are tough but like you I was determined to curb the sleep to try and combat the fatigue which I found did help me a lot. My appointment went ok although it was a nurse I saw and not the onc - not sure whether this is normal or not, didn't think to ask, I have lists of questions and then forget to take them, chemo brain is annoying especially when you realise after the event you didn't ask anything you intended tooSmiley Frustrated

 

Kelly - Very pleased you managed to work it is good being amongst people, I'm lucky in that although I'm not at work my colleagues are in touch regularly keeping me up to date with things and we go out on my 3rd chemo week just to keep in touch so it won't be as difficult for me when I do return and it's getting them used to what chemo brain does to you so they know what to expect but hopefully that will have resolved itself by thenSmiley Happy. Glad you got your constipation  sorted, it is a very uncomfortable condition, luckily I didn't suffer it this time, last time was when I was pregnant and boy is it horrible and somehow saps the energy. My chemo nurse did say that if I suffer from it to let them know and they will prescribe something, I would've taken senokot like you, easy to get but she said they would prescribe it - I suppose they just want to keep an eye on everything you are taking.

 

Well ladies, I have rambled on a fair bit - trying to get it down before I forget but onwards and upwards we go - we've got this and will get through.

 

Joemic x 

Member

Re: May 2019 Start

Wow Kelly, that is amazing going back to work so soon - well done!

 

Seems like everyone is generally doing ok atm - let's hope it continues Smiley Happy

 

I am feeling fine a week after first chemo.    Have had a chance to do some nice things.  My son is back from uni for a few days so took the opportunity to go out for lunch with him yesterday - it was lovely to do something so normal.  I think the weather is helping with recovery too as it's great getting outside and I've walked the dogs every day since treatment.

 

Is anyone else having food cravings?  Mine are weird cos they're for healthy stuff.  I'm obsessed by tomato soup!  Also really wanting fruit and veg - what's wrong with me?

 

Wishing you all a lovely sunny day xx

Member

Re: May 2019 Start

Morning everyone

Well I managed 4 hours at work. Yippee. It’s was quite exhausting, but was good to get out. So am going back today. Had a pretty rubbish night though, badly constipated, not been since Friday. Took senokot, double the dose, and it has worked. So actually feel pretty good this morning. 

 

Kelly xx

Member

Re: May 2019 Start

Hello all

 

I am so pleased that your mouth has improved SP, it did sound particularly difficult side effect. 

 

My energy levels are improving (since first EC on Friday) but like you, I have struggled to be patient with this, and also found the brain fog more of an issue than I expected. I keep telling myself it is only 5 days since quite a significant amount of toxins have been injected into my body ( and although I don’t really drink since having children - lack of opportunity more than moral reasons) it was taking me a good two days to totally get over a hangover.

 

I do keep trying to keep my water levels up and walk everyday (the weather is really helping this) I am trying not to sleep much in the day, as I read this can prolong the lethargic feeling, but it has been hard sometimes.

 

Joemic, I hope your appointment went well today, and everything this as expected.

 

KellyP, how did you get on at work? I am very impressed.

 

I hope everyone else on the thread is doing well.

 

love to all

xxx

SP
Member

Re: May 2019 Start

Hi Dapple ( great name!) 

 

You are in the right place and you are very welcome!! Your chemo drug regimen is the same as mine. I had my first treatment on May 3rd and if it is any consolation, I definitely have chemo brain!! However, I’m managing the fatigue quite well...drink lots of water and make yourself go for a gentle walk every day. It really does help! 

I have also had my hair cropped short, as I know it will fall out soon. Better to be prepared. Losing short hair is less traumatic than losing long. 

 

I’m pleased to report to everyone that in desperation, I took matters into my own hands and have found a solution to my red raw mouth. I’ve been having salt water followed by bicarbonate of soda mouth rinses every hour. It was recommended by someone who has suffered with cancer of the tongue. The strength of solution was also recommended.  It really has helped to alleviate the pain and soreness!! Sometimes the old fashioned remedies work the best!! Just thought I’d share the idea!! 

 

I’m now feeling much more myself and have been out walking in the sunshine. Today I’ve even ventured out to get some bedding plants. If I’m home all summer I want my garden to look pretty!! 

 

SP

😀

xx

Member

Re: May 2019 Start

Hi lovely May ladies, I'm Dapple and am new to the May treatment thread, so apologies if I've posted in the wrong place! 

It's really encouraging to read about your experiences, and to know there are others in exactly the same place - hope I can contribute helpfully. Started E C last week (1st of 3 rounds, then 9 wks Paclitaxel). Thought I was prepared but nooooo!! Can cope with the nausea (good meds), the hair (got it all chopped off in advance), the flakey skin (Aveeno - your Onc team can prescribe it), but not dealing with lethargy very well at all. Was hoping to overcome it and be able to work through treatment but my brain seems to have other ideas! Anyone found brain fog occurring this early and ways to overcome?

WE CAN DO THIS!

Dapple xx

Member

Re: May 2019 Start

Hi all May ladies

 

Hope you are all feeling as well as can 

 

I bit the bullet and washed my hair prior to my appointment today, unsurprisingly 90% of it came out - glad I didn't do it yesterday!. I'm glad I did wash it as strangely enough when I was combing it and it was all coming out it helped me come to terms with the fact I was losing it. When I got to the hairdressers she suggested having a grade 3 cut - any shorter and my wig would irritate the stubble, so I took her advice. Whilst she was using the buzzer she was saying 'it's going to come as a shock when it's off don't be surprised if it makes you cry' bless her she was trying to prepare me, all I could think was 'flipping heck I look like my brothers twin'Smiley LOLSmiley LOL, in the end it was no where near as traumatic as I thought it would be. I called into work after and had lots of compliments on how my wig looked just like my real hair, I'm glad they thought the same as I do about it.

 

SP - I'm due at my onc appt tomorrow - I'll ask about mouth wash.

 

Joemic x 

Member

Re: May 2019 Start

Dear SP

 

Your results are such good news. What a relief.

 

im really sorry to hear about your mouth, that does sound awful, I hope this continues to improve. If I read/hear of any ideas I will pass them on. I have only been told about Corsadil daily as a mouth wash.

 

Joemic - I hope your hair appointment goes well, I haven’t been washing mine either, just wearing a cap. Also that your blood tests go well.

 

love to all

xxx

Member

Re: May 2019 Start

Hi all

 

SP - I'm sorry to hear you haven't been too well, I don't know of any mouth things apart from the salt water gargle but I'm sure somebody else has suffered this. Glad to hear your genetic test have proven to be negative, that must alleviate some of the worries you have had to deal with over the past few weeks, I bet you are so relieved and quite right too.

 

Grannypops7 - I've got my fingers crossed that my next 5 go like this one but will wait and see. I know what you mean about washing your hair - mine has been coming out in clumps and as I'm due at the hairdressers tomorrow I haven't dared wash it in case it all fell out, which is a bit daft seeing as though that I why I'm going to the hairdressers tomorrowSmiley LOL I've had it in a hair net but it's still managing to escape! I'm day 17 today and feel fine - I've got my blood test tomorrow and the Oncologist on Wednesday and 2nd EC cycle Friday if all bloods are ok.

 

KellyP - Hi and welcome to the forum, I know what you mean about work but my Onc doesn't want me to go to work, well at least not for another cycle or 2 to see how I cope with the chemo.  I've worked for 35 years and find it difficult to stay off; I'm just not used to it, this was the first time in 5 years I've been off and nope I just don't like it, so I get where you're coming from.

 

RuthG - Maybe we got the same wigSmiley LOL I'm hoping the hairdresser will trim the fringe on mine tomorrow otherwise it will drive me mad.

 

Joemic x 

SP
Member

Re: May 2019 Start

Glad to read that you are all coping well. I’m afraid I’ve had a bad weekend with a red, hot mouth which was so painful I couldn’t eat....tried normal alcohol free mouthwashes and gel but they burned. My gums are so inflamed! Not a pretty sight! In the end I resorted to hourly salt water rinses. They have helped. Also bought a recommended mouthwash online and that has soothed the gums. I feel better today but would be interested to know if anyone can recommend anything to treat this as it could happen in the next cycle?  I’m losing weight as I’ve had several days of not eating much and have gone off sweet stuff!!

My good news for the day is that my genetic test results confirm I don’t have the BRCA1 or 2  mutation so I don’t need a 2nd mastectomy! 

Hurray!! 

SP

x

Member

Re: May 2019 Start

Hello to all

 

I hope everyone has had a peaceful day, and where possible been able to enjoy the sunshine. 

 

I know what you mean about washing your hair, I was surprised how concerned I was about this, and am considering just shaving it off to take away the element of uncertainty. I have bought a wig, but need to get this trimmed, as the fringe covers my eyes!!! I look a little like a highland cow.

 

Kelly - your treatment plan sounds similar to mine, I have 3xEC at 3 weekly intervals then move to the Ppaclitaxel for between 9-12 weeks. 

 

Love to all

Ruth xxx

 

Member

Re: May 2019 Start

Hi Joemic

Went better than I expected...felt nauseous for four hours..but not too bad..took all sickness meds..hopefully I’ll be similar with next 5...but it changes to Taxotere for last three...not sure how this will be...got my wig day before treatment started but now feel apprehensive about wearing it...was frightened to wash my hair yesterday incase it all fell out 👀👀 but still there..hope you’re continuing to do well x

Member

Re: May 2019 Start

Hi Ruth, my treatment started on Friday. So it’s every 2 weeks, 4 EC and 4 paclitaxel. Must admit haven’t felt too bad, just heady and tired. It’s good to read everyone’s different experiences. I really didn’t know what to expect. I plan to be as normal as possible, but will know when I need to take it easy. I am going into work tomorrow, just for 4 hours. It’s a short 10 min walk. Or I can jump on a bus. Some people will think I am nuts, but sitting around at home, just isn’t me. 

 

Thank you for welcoming me into this group

 

Kelly xx

Member

Re: May 2019 Start

Hello Kelly

 

I am sorry you are here, but you are welcome. Generally I think the forum is for sharing experiences and getting advice and support.

 

Has your treatment started or due to start soon?

 

lots of love Ruth xxx

Member

Re: May 2019 Start

Hey everyone, sorry didn’t know how to use this. Lol. Well I am here now.

 

Kelly xx

Member

Re: May 2019 Start

Hi fellow May buddies

 

Hope everyone is feeling as well as can be and any side effects are a minimum. Still feeling ok, went for a walk into town with hubby and youngest to get a hair net (shedding loads and it's doing my nut inSmiley Happy), thought the exercise would do me good 1 1/2 mile there, a walk around and 1 1/2 mile back. Unfortunately I undid all my hard work and had the most fabulous double cone ice cream with a flake to top it off (rude not too), boy it was worth it, warm sunshine and ice cream, great company - what more could a girl ask for; was able to forget about present woes around chemo for a couple of hours - fantastic.

 

I hope everyone else had a good day and enjoyed the sun.

 

Joemic x 

Member

Re: May 2019 Start

Jemima - if it helps any I started crying in the chemo unit when they started talking through the injections with me Smiley Sad  It wasn't so much the thought of doing them, just being overwhelmed by the whole thing.  I did my first one yesterday and it was honestly fine, but hopefully they can arrange something for you if you can't face it.

 

Louise - Nice to meet you (if only it were in different circumstances!) - must be lovely to have 3 grandchildren Smiley Happy  Oh and scruffy dogs are the best - I have two.  One has been really looking after me since I've been ill, the other couldn't care less as long as I'm not late feeding her lol Smiley Wink  I really hope you get to see Bon Jovi - something really nice to focus on.

 

Ruth - your reaction to the EC sounds similar to my FEC.  I'm not sure how similar they are.  Glad you are feeling a little better.

 

SP - yes, the injections are not as bad as you imagine.  I guess with all of this treatment, it's the thinking about it beforehand that makes it feel worse!

 

Susan - That's great that you have had the district nurse come round to do your injections.  I was hoping the nurse was going to come and do my PICC line care but it looks like I will have to go in to get it done.

 

Joemic - Sorry your hair is shedding now, but at least you have a lovely wig.  Since looking at wigs I was amazed at how natural they can look.  I think taking it out for a spin the first time will be the scariest and hopefully it will be fine after that.

 

 

Member

Re: May 2019 Start

Hi

Thanks all.  I did speak to a nurse helpline where they did my operation and she said it varied how many days you have injections for depending on the dosage of the chemo and how likely it is to affect your cell count.  She said the chemo nurses would come up with a plan which might involve the district nurses - though I can't believe that after the ward nurses had to beg for the service local to me to do the dvt injections after my operation.  The assumption that I would do my own injections and the last minute referral just before my discharge left me extremely anxious.  At least it looks as if they might not have to start immediately after the chemo. 

SP
Member

Re: May 2019 Start

Hi Jemima,

 

No, that would have been too much for me. If you can’t cope with doing it at all, try asking the chemo nurses for a district nurse to give you them? 

 

SP

x

Member

Re: May 2019 Start

Hi SP

 

Thank you for your reply.  To put it this way, would you have been able to get in a taxi and travel for an hour to get to the hospital for several days after the chemo to get the injection because realistically that's what I'm going to have to do?

 

Member

Re: May 2019 Start

Good afternoon ladiesSmiley Happy, I hope everyone is as well as can be.

 

Ruth - if it's any consolation, I felt much better after my EC chemo by the Monday (Like you my day is a Friday). Sure I felt tired but apart from that nothing else - I hope you find the same. What steroids are you taking? I've only had the ones to take an hour before my chemo. Keep up the fluids they do help. I didn't lose my appetite but found that I suffered indigestion if I only ate small snacks despite eating them regularly, the indigestion stopped as soon as I went back to 3 meals a day with no snacking. i guess like everything else we all respond to things differently, you will find what works best for you soon enough.

 

Hi Jemima - From what I can gather from reading posts, I think the injections are a common part of the treatment. I didn't start my injections until the following Tuesday (4 days after chemo) for 5 days. I think some of us have a different amount to have; I wonder if they adjust doses following each pre-chemo blood test, I don't know, suppose I'll just have to wait and see. The needle is very fine and to be honest you cant feel it but I understand your concerns around them, I hope you find a suitable solution.

 

SP - Well done on giving yourself those injections, the first one is scary isn't it then not so bad after, although I still found myself taking a deep breath and making whoosing sounds when I did themSmiley Happy, the kids were wondering what I was doingSmiley LOL

 

As for me I'm now day 15 following first EC and my hair is shedding quite a bit today (I didn't cold cap) so I've booked a hair appointment on Tuesday with a hairdresser that deals with chemo patients all the time, so at least she will be able to give me advice on whether to cut it or shave it - that's if I have any hair left by thenSmiley Wink. It's sad seeing it shed but I've got a wicked wig which is exactly like my own hair - well that is when I dye my natural colour which is rather grey back to my original rich brown colour!. At least I know the chemo is working, in that it's attacking  the fast growing cells so hopefully it's getting the rogue blighters that might have escaped from the original tumour. Other than that still feeling good and getting on with normal activities. Will post a little about myself later on.

 

Joemic x 

Member

Re: May 2019 Start

I have thankfully had the last of the daily injections after round 3 of FEC and the district nurse service came round every time . I reasoned they were so important I could not face attempting and failing or not injecting properly . You really should not have to do it yourself and I just told the Christie I couldn't and they sorted it 

SP
Member

Re: May 2019 Start

Hi Jemima, 

 

I felt exactly the same about the daily injections!! My 1st chemo was May 3 so I have just finished my last injection. I came home with 7 injections...one each evening, starting the day after chemo. I was also really anxious doing the first one...but felt I had no choice, as my husband is more squeamish than me and it seemed ridiculous to contemplate travelling to a friend to help me with a 10 second task!! If you really can’t contemplate trying it, have you got a friend who is a nurse or doctor,  who lives near to you? 

 

I have braced myself and done them. Honestly, if I can do it, anyone can!!  I think you will have them after each treatment. It seems to be pretty standard now to have these. It is worth doing it as I had chemo in 2012 and my last two cycles were delayed because my white cell count was too low to proceed. I was started in the injections then and a district nurse came to the house to give them to me? I suspect this service has been hit by cut backs and the increasing number of chemotherapy patients? 

 

SP

xx