February Chemo Starters 2018

Going through breast cancer treatment Chemotherapy monthly threads
141

Morning all. Thanks for the advice re hair. I am now Day 19 on TC and used the cold cap but yesterday my hair started coming out. I think they said you can lose up to 50% of your hair so am hoping cold cap still works and some of my hair will be saved. Put my wig on yesterday to get used to it a bit and also for my children to see me looking different just in case I wake up tomorrow without hair!! My little girl is struggling with the hair loss as am I.

It’s amazing how you do start to feel better isn’t it and side effects stop but then it all starts again in a few days and am dreading those awful injections.
Weebird hope you are feeling better. Sounds like a scary night.
Flora I hope your chemo drugs get sorted must be so frustrating.
LadyH how is your hair doing? Has cold cap worked for you? Will you use again this week?
Have a lovely Sunday, take care everyone.

142

Hello everyone omg wee bird you have had a fright I hope everyone is reasonably well now .
I went to hospital Friday to see oncology and have bloods and to my amazement I’m severely neutropenic they have said unless it rises to 1.5 I can’t have my 2nd FEC tomorrow so I’m hoping things improve but can’t believe the results as I now feel pretty good and normal.
I know a lot of you use GSCF (I think it is) they said to go 8.30 tomorrow have bloods go home and they’ll ring me if it’s on . So fingers crossed .
I made the decision Thursday to shave the hair but when I put the wig on it was to long as I had my thick hair underneath before so a kind hairdresser trimmed it yesterday. But I have shaved it too short and look like a skin head and it’s really rough I’m thinking if I put sticky tape on it it might help the tiny bits come out - any suggestions as it’s driving me mad and catching on to inside of hats !!!
A good Website for hats is annabandana they are reasonable prices.
Good luck everyone for treatments and I’m so glad the white stuff is finally melting ?.

143

Afternoon everyone- have been out for lunch - so good to be out and about and feeling good again ?

Wee Burd that sounds like a scary experience- glad it wasn’t anything too bad 

Macneech - yes Annabandana have some nice hats at reasonable prices

Chrissy - hope your bloods pick up and you can have you second round Ok. 

Kitty - hair loss for me has been that it is thinning but no bald patches. After second chemo (FEC) it seemed to start shedding a lot but it has eased off again now and to be honest you can’t tell that I have lost loads it still looks OK - feels a bit rubbish though - dry . So I am going to monitor over next 2 weeks before next chemo and decide whether to keep up with the cold cap. 

Jude - I was thinking about people who would have to travel this week for chemo - it must be awful to prepare for it and not get there. Let’s hope that was the end of the bad weather.

Ive just started with a bit of a cracked and sore patch at corner of mouth- am using the mouthwash hospital gave me and putting bonjela on it as that’s all I have today - anyone got any suggestions for something to stop it getting worse / improving it?

also have had some tingling in fingers and feet , and those hot feet at night keep returning- not as bad but still there. Don’t think there is much I can do about that except mention to oncologist when I see him again?

Good luck for anyone having treatment this week - take care all x

 

144

Not a great start to the week - went to the GP practice nurse today to have blood taken but after Friday’s escapade at the hospital there was so much bruising around the veins in my arm that she couldn’t get enough of a sample.  She then tried the back of my hand and I ended up feeling dizzy and faint again ( as per 1st chemo cycle when the cannula went in).  She got enough there for one of the samples and a bit more for the second, but probably not enough.  By that time she wasn’t going to try any more, so I have to hope that it was just enough to be tested properly.  I have an oncology appointment tomorrow to find out if Wednesday’s treatment will go ahead.  The thought of having more blood taken tomorrow is not a happy one.  Neither is the thought of the treatment being delayed - just want to get it over with now.

 

Hope everyone else is having a better day.  The snow here is gradually melting, and it’s now gone that horrible wet cold slushy way. An afternoon cuddled up on the couch with the dog beckons!  Keep cosy everyone!

145

Hi all

So today is day 15 after Docetaxel and Capecitabine started. I am now on my official 7 day break from Chemo and having been told to stop the tablet side of my chemo treatment last week I have felt well enough to pop into work for a few hours. Feels good.

Ran my fingers through my hair today and it’s started to come out already. I knew it would and have prepared for it by buying hat’s, scarves and even ordered some wigs to try but it still made me take a deep breath. Although, not sure i am a wig person and last time I had chemo I just went eau natural or wore a scarf.

Wee Burd ----- sounds like you have had a horrid time of it lately. Sending gentle hugs.

T

XX

146

Hi All

Macneech, the inside of my nose went runny/bloody/scabby too after my first chemo. It healed up after about a week and a half, but I think it is a combo of nasal hair loss plus low platelets meaning any skin break won’t heal well.   

 

Oh Wee Burd, how scary.  You did the right thing in getting checked out by the ambulance.   Its amazing how you can feel well but still be at risk.  I completely underestimate it all the time.    And yes, itchy scalp will be your hair follicles reacting.   Do you think they’ll suggest getting a PICC line if they’re having problems taking blood?   We get pricked and prodded so much through this. :( 

 

Kitty, I hope your little girl gets used to your new look. I don’t have children but last time my niece struggled with it. She found me a bit frightening. She was 7 years old at the time.  It was upsetting that my look was upsetting her. Difficult emotions. 

 

Chrissy, I hope all has gone well for you today. Delays are so frustrating, but they do have to make sure you’re well enough to take the next dose.   When I had my reaction last Wednesday, before I’d even recovered I was asking if that meant it was all aborted again (it was) because I just want to get it in, done, moving on, over.     I don’t have any hair tips - my bristles are coming out every day (handfuls in the shower!) since I shaved it a week ago, but I have only worn hats out and about this past week so it isn’t causing any problems. I haven’t needed to wear my wig yet.   My hubby left my hair about half an inch long.  

 

Bibi, I’d definitely mention the hot feet to the oncologist, just in case.  I wonder if it can be a sign of peripheral neuropathy?    I think I have the start of that in my fingertips, and apparently the abraxane is more likely to cause it than docetaxel, so I’m a bit paranoid about it now.

 

MIssGreen, glad you’ve made it to work for a while.   

 

I took the decision yesterday, after having a very low, emotional day, that I will not go back until after this treatment now.  It was quite a tough decision for me, as I pride myself on not taking much sick leave and know that I’ll feel great on some days, and then feel like a fraud.  But it has lifted a weight and everyone has been mega supportive of the decision.  It probably makes things easier for colleagues, as I’m not messing them about all the time and they can just get on with stuff.    Even though I’ve just had a few millileters of chemo in the last 2 aborted attempts, I have still felt very shaky all week, and very emotional.  So I think even a little bit of the chemo, plus the steroids and piriton have been affecting me, just when I thought I should be OK.   We’ll see how wednesday goes now.  Third time “lucky”!!

 

147

Wee Burd, hope you are feeling better now.  Dont feel guilty,  you neded to be checked out.  I ended up in hospital twice with my chemo last time, once under my own steam and once by ambulance (my first time too) but they said I did the right thing.  Your body is going through hell and needs a bit of a check up every now and again.  And you also need the reassurance. 

Will they not give you a picc line?  I got one straight away this time as my veins are so bad and its brilliant.  Im having to have blood tests every few of days at the minute as my neutrophil count (think thats what its called) is down to 0.2, oops, and if I didnt have the picc line in I dont know what I would do,  its worth asking the question. 

 

Hope everyone else is doing OK

 

Take care

Julie xx

 

148

Hi Wee Burd

I agree with Julie that it would be good to ask about a PICC Line. My veins are shot and over the years I have got so stressed when I have needed bloods to be taken or cannulas fitting and told my Onc this. They offered to see if my veins were up to a PICC and they are; it’s made the whole process less stressful.

Sending gentle hugs

T

X

149

Hello everyone

well I went to hospital yesterday to get bloods checked as last Friday I was told neutropenic and if ok today I could have my 2nd FEC .

i was about to have bloods from left arm when lady said are you having chemo today. She then said I’ll have to do right arm, like you weeburd my right arm had sentinel node biopsy so this was a dilemma . In the end they wanted to put a cannula in left but I had driven myself there and had nothing with me as I was told have bloods and go home to await outcome. I was told never to have blood from right arm or blood pressure etc but they said I could have bloods. It was really scary but had no choice. I even asked them to take from my foot!

 

anyway after all that I went home at 11 rang and the neutrophils were 1.46 and needed to be 1.5 so after all that I couldn’t have 2nd FEC.

 

They are really not keen on pic lines at my hospital and I really don’t want this to happen again.They also don’t routinely give the injections so the whole process is delayed. I know it’s no ones fault but it is my 50th on 1st April I have cancelled so many things and wanted to just have a tiny break away on 5th and 6th with my hubby and girls but won’t be able to now. He works shifts and it’s been really difficult. Life sucks!

150

Oh Chrissy, so sorry it didn’t go ahead. You feel as if your whole life is on hold and just want to get through it. Bear up, chin up, you will make it through and even if you don’t get away for your birthday I am sure you and your family will manage to have a treat of some kind. I’m off now to see what kind of pincushion I will be today. And it’s snowing again so fingers crossed that the road stays open! Have a good day everyone x

151

Oh i’m so sorry Chrissy.   I know i’ve been told they can take from my node-less arm if they have to, but always try not to.   I actually didn’t realise they took this precaution with SNB too.  I had full clearance on my right arm 8 years ago, and SNB on my left in December, so we still use my left side. Its just about standing up to it at the moment.  

 

I can only sympathise with the delay causing problems with the few celebrations and things we’re trying to look forward to.  I had planned a few things for in between treatments and it is all up the spout now. It makes me sad too. :frowning: I hope you can at least get out for a meal, if not a few days away.   Big hugs xxx

152

Hi all

Macneech … that’s great news x

Chrissy … sorry to hear you’ve been through the ringer with your veins. Sending hugs.

So after feeling buoyant with managing a few hrs work yesterday I needed a massive cuddle of my Mum this morning after I little melt down. She lives in Cyprus but has come over to get me through my first 2 cycles. I am 49 this year so it goes to show you’re never to old for Mum cuddles ?. My scalp is really itching again and hair came out in clumps in my hands as I showered this and when I dried it this morning. I knew this would happen but OMG it’s still traumatic. More so than I thought as it’s not my first tango with chemo. Can see me shaving it off sooner rather than later.

Love n hugs to you all

T

153

Well as anticipated more blood was needed today although it wasn’t because yesterday’s sample was too small but because the numbers were slightly too low. Just waiting for a phone call to say whether it’s a go for round two tomorrow. At the moment they’re looking to keep using veins and have been told to stay warm and hydrated. It took 3 goes today to get the blood but at least I didn’t faint this time. Onwards and upwards.
Miss Green no one is ever too old to benefit from mum cuddles or too old to give them. Hope you are feeling a bit better now. Xx

154

Hi girls 

I just wanted to say thank you for your comments you are all so lovely.

i feel a bit better today have just been to Sainsbury now don’t laugh have bought a lady shave for my bday but obviously for when it starts to grow again !!

i know I’m crazy.

 

hi Jude oh I’ve gone sideways ! Sorry don’t know how to change back. Anyway it’s Dudley group of hospitals called Russell’s hall hospital. 

 

Miss green yes I’ve had to shave mine off and went a bit short I look like a skin head! I scare myself in the mirror ! But the wigs out now but it’s not the same is it. Good luck x

 

weeburd- sounds like u having issues with bloods do they not do picc lines routine at your trust too?

 

flora thankyou re bloods from node arm I feel the rules are broken when needed but what’s the point of having rules otherwise.

 

good luck to everyone I’m making the most of feeling normal again doing house work and sweeping up outside, never knew snow could make such a mess !! Xxx

155

I did something similar, Chrissy. Bought a new lady shave thingamy just before treatment as my old one had broken. Since I had a trim, nothing more has grown!    Another light of the lack of hair thing - less trimming and shaving to be done!

 

Fingers crossed for tomorrow, WeeBurd.

And we all need cuddles, that’s for sure. I hope everyone has a source for them when they need them. xxxx

156

Good morning everyone 

Good luck today Wee burd and Macneech - hope it is straightforward and you recover quickly - take care x

Chrissy I hope you don’t have to wait too long before you can go ahead - and I’m sure your family will make your birthday special for you xx I know what you mean about feeling like you can’t plan and your life is on hold- I have dates ticked off on calendar of when chemo should be but obviously that could change if any holdups. That feeling of not being able to plan ahead is very frustrating and was getting me down last week - when I was feeling pretty awful anyway after chemo , but having now returned to planet Earth I am trying to be positive and just plan things for these weeks when I feel good - meeting friends, going for walks etc.

Miss Green - Mum cuddles would be nice but lost my Mum to cancer 22 years ago so I look forward to daughter cuddles. - the highlight of my coming week is looking forward to Sunday when I am going wedding dress shopping with my girls - my older daughter is planning her wedding for next spring - very excited ? 

My hair seems to have stopped shedding again and I’m planning a trip to hairdressers on Friday for a trim - had it cut into a short style before first FEC and I love the style but it needs a tidy up. So hopefully going to continue with coldcap next week ? and hope it just thins but still looks OK. 

Thinking of you all going through treatment and recovery this week xx

157

Wee Burd how did you get on with your bloods?  Did you mange to get your treatment?  I cant believe that they wount give you a picc line, it would make your life so much easier and is easier for the staff too.

 

MissGreen.  I would do anyting for a cuddle right now,  either from my Mum or my hubby but they both have bad colds and my neutrophils are down to 0.2 so I am having to keep away from them.  I’m going to work just to keep busy, I work in a small office with only 6 other people and luckily everyone there is well at the minute or I wouldn’t even have that distraction. 

 

My hair is also starting to fall out,  just a few strands at first but now getting worse,  I know I need to have it shaved but haven’t quite worked up to that yet. 

 

Chrissey so sorry you couldn’t have your treatment,  I have my next blood test on Friday,  for treatment on Monday,  hoping my levels have gone up,  even splashed out on some Manuka Honey as I read an article to say it can help so thought I would give it a try.  Who thought it would be so upsetting not to be able to have chemo!!!

 

I know what you mean about cancelling things and not being able to plan,  we have just cancelled a cruise we had planned for our 25th wedding anniversary in July,  its so upsetting, and frustrating,  we have this crappy disease and it takes over everything.  Sorry, feeling pretty sorry for myself at the minute,  just feel low and tired.  

 

Bibi, enjoy your wedding dress shopping,  it will be nice to have something to focus on,

 

Hope everyone is keeping well,  take care and we will get through this. xx

158

Just to update, I finally had my 2nd chemo today, a week and half late. The abraxane worked! It has the same side effects as docetaxel but less allergic reaction so I’m now about to start the roller coaster couple of weeks. But just so glad things are back on track. Phew.

159

Flora29 thats brilliant news.  Fingers crossed the se’s arent too bad.

160

Flora great news that you are back on track and without the allergic reactions. You must be feeling really relieved. Hope the next week or so isn’t too rough. Be kind to yourself. I have been having the same guilty feeling about work and the fact I’m not there on days when I am feeling fine. However I know that if I went in I would start getting involved in things and start to get stressed and I can’t cope mentally with stress just now. Fortunately my bosses have been really understanding about it all. I am going to see my manager tomorrow for a wee catch up so I don’t feel too far out of the loop.

Today’s treatment didn’t go ahead. My bloods were up and I was cannulated on the second attempt and went through the whole cold cap pre-cooling and intravenous anti sickness stuff but when the nurse started giving me the epirubicin it started to feel nippy and she stopped it at 1 ml because of the risk of extravasation. We had one more go at a cannula but my veins just were shutting down as soon as the needle went in. I asked yesterday about getting a line and they had already made the request so I should be getting a Hickman line put in and will go back next Wednesday for another shot at round 2. It was quite depressing to have a delay but at the same time it’s a relief that I won’t be having needles stuck in me every three weeks!

Macneech I hope yours went better than mine and side effects are not too bad.

My hair now seems to be starting to come out - noticed a few strands in the sink after rinsing my hair after the cold cap, however it seems to be holding on pretty well so far.

The upside of today’s adventure was that I wasn’t feeling sick so we went down to Glasgow and had lovely dinner out with my student son. And I realised that of the 3 of us I have the shortest hair ?

Take care everyone. Hugs all round x