Anyone starting chemo August 2015?

[bravescholar]

carolec & blondeambition sorry, got mixed up over dates. surely chemo brain can't have set in already?

[bravescholar]

Hi all. Still feeling ok after yesterday's chemo. Bit headachy. Preparing for the onslaught. Am being very compliant with the meds.

Cool cap was cold (surprise!), but I found it bearable. However, I'm going wig hunting soon with my two 20-something nieces - I'm not hopeful re keeping the hair but I wouldn't want to think I hadn't tried the cool cap. Will also order some "headwear" online today. 

carolec & Blondeambition good luck tomorrow.

bib44 I'm on neoadjuvant chemo AC-T, 8 two-weekly cycles (4 of each). I'm to have a G-CSF injection 24 hours after the end of each session to help support my white blood cells. Today I have to go for hospital for this but they'll teach me how to do it myself so I can do it at home for the other sessions. The joys. I'm hoping to have the odd knock-up during chemo if I'm up to it. My op - in December or January if things go well - will be on the right side as well.

I don't know what the etiquette is on this, but does anyone think it would be nice if we all knew a bit about each other, perhaps at least which area of the country we live in? I don't mind going first. I live in South London. I'm 52, I'm originally from Glasgow and I've not lost the accent!, and I've been in London since 1987.

[Bibi44]

Bravescholar - how are you today? Also good luck Carol & Blondeambition for chemo/heart scan. If anyone is interested I just downloaded a healing app by Glenn Harrold. Sounds a bit hippyish I know, but I read it reduces recurrence so I thought I'd give it a go.  It was very relaxing & I feel super calm now. Maybe worth a try if you are feeling stressy.  

[Sarahd-1]

Hi bibi sorry I missed your post too. I think I'm a bit tired today. Yes I've got 3 or maybe 4 weeks of radiotherapy after then those tablets for 10 years! I will have a look at that book 🙂 xxxxxx

[Sarahd-1]

Hi carol that's great news 🙂 I hope it goes ok. Xxxxxxxxxxxxxxxx

[carolec]

Bravescholar glad to see you on here after your first chemo and hope you take it easy over the next few days. I'm home from hospital thankfully and it's ok for me to have my chemo tomorrow so will probably go for it xxx

[Bibi44]

Sorry should say cold cap, not sure where volume came from😳

[Bibi44]

Hi Bravescholar I used to play 3x a week & stupidly thought I might be able to play about now.  I think it's because I'm right handed & that's my op side.  All the tennis ladies have been amazing & really rallied round, but I feel a bit of a sad case just turning up for the coffee afterwards! So you survived the volume cap. I'm going for it, but as it's the only bit of the treatment where I can say "I'm a wimp, get me outta here" there are no guarantees I'll stick it out.  We can compare progress.  What are you on? X

[Sarahd-1]

I'm so sorry Lisa I missed your message. I hope you are ok Hun. I don't if they realise what all these scans and waiting for results do to us. We will all be thinking of you tomorrow? Lots of love xxxxx

[Bibi44]

Hi Sarahd

I think our treatment seems quite similar.  I am having radioT for 15 consecutive days after chemo.  Is that the same for you? My husband got me a book called 'bah to cancer' & the woman in it had our exact treatment. Quite interesting to hear her experience.x

[Sarahd-1]

Hi bravescholar so good to see you on here. How was it? Have they given you all the anti sickness etc to go home with? Was the cold cap ok? I was going to take golf on as a hobby after all this but that looks like it's out the window. I will have to think of something new xxxxx

[bravescholar]

Good luck, Lisalouw. We're all keeping our fingers crossed for you. I'm at home resting after 1st chemo and four hours (!) of cool capping. Feeling ok so far, just waiting for nausea and fatigue to set in. 

Bibi44, no tennis for a year! I play tennis too, and, I know it's silly, but the thought of not being able to play tennis for a long time is one of the worse things about this whole thing. I play in the ladies 3rd team at the club and I really, really, really love it. My team mates been great since my diagnosis and all turned up for a "final" friendly last week!

[Sarahd-1]

Hi bibi I know what you mean about the rushing around getting everything sorted. I'm having the same as you and it will be next weds I have to take the tablets for 10 years afterwards! Are you having radiotherapy? Carol are you home now? Hope you are feeling better. Good luck to all the mums with kids and their gcse results xxxxxxxx

[carolec]

Thinking of you LisaLou and sending virtual hugs - good luck for tomorrow xxx

[Bibi44]

You poor love, you have really been through the mill & sound exhausted. Get your feet up tonight & don't worry about the post.  Good luck xx

[Lisalouw]

I posted earlier and it's disappeared and now I'm too tired and sore to do it all again , just come back from onc , I have to now have a head ct scan from something on the bone scan , so panic stations again , my chemo is now tomorrow , my Hickman really sore now after an hr journey in the car , I felt every little bump ouch , hope it's abit better in morning , don't want side effects of chemo and a sore neck and chest , Lv to everyone , I'll try and repeat my other post later xxx

[Bibi44]

Sorry Sarahhd meant your mouth not teeth.  I'm a bitty scatty at the mo.

hope it's better now

[Bibi44]

Hi Augustinas

So much has happened in the last couple of days whilst I've been running around like a headless chicken getting haircuts & wigs sorted.  Carol, so sorry to hear about your experience.  Sounds horrible for you & I hope you are better.  Also toothache/bones scans not at all nice either.  Good luck to all our (not so little) GCSE grafters . . I had a debate with ours about whether getting your results is worse than getting a wig & he thought it was!

I got 6x FEC-T (sounds like a prison sentence!) with a year of Herceptin & 1st one will be next Thursday. I found the oncologist very nice, but wish they didn't have to run through all the rare side effects . . . One she quoted was 1 in 2000!  I need a muga scan.  Has anyone had that?  

i like the sound of you playing golf . . How long after surgery was that allowed? I have been told no swimming until March, no tennis for a year & no golf for the foreseeable.  She suggested gentle starching instead, ha ha that should say stretching. 

Hope everyone is feeling ok.  Best wishes to all x

[Sarahd-1]

Hi ladies hope you are ok today? I've had my scan and over the moon that my liver kidney spleen and bladder are a ok such a relief! I hope no more scans don't think my nerves can take it. So I've just got to see gp this afternoon to check throat but that feels loads better today. Xxxx

[carolec]

Good luck today Bravescholar - I had my first one 6 August and found once that was over I was in a much better frame of mind as knew what I was dealing with xxx

[Sarahd-1]

Bravescholar all the very best for tomorrow I will be thinking of you as I'm sure we all will be big massive hugs to you xxxxxxxxx

[bravescholar]

Oh my goodness, we seem to be having a hard time of it, don't we? I'm all set for my first chemo tomorrow (I think I'm the only one of the group who's having chemo first. Is that right?). Am not feeling confident at all. I keep having to remind myself that this is the first step to getting better. Was up and working at 4,30 this morning. Just couldn't sleep. Managed to have a nice day today, though. Had a knock-about with older son on tennis courts and managed not to cry singing happy birthday to my younger son. Good luck everyone.

[carolec]

Sarah hope you are relaxing now and try not to do too much - good luck for your liver scan tomorrow and the Hickman line on Thursday.  I'm on another 20 hour drip so still in hospital and soooo bored! To top it all my eye infection is traveling down my face so I look hideous and on two lots of antibiotics.

Lisalouw - good luck with your first chemo on Friday - the first one is the scariest cos its unknown so sure you'll be in a better frame of mind when that's out of the way.  Blondeambition I remember waking up in the night as well, again once you start hopefully you'll be able to get your head round it - hark at me I've only had two!  Not sure if I can have mine on Thursday yet and I'm kind of hoping they leave it for a week if I still have this infection.

i too am trying to keep track with what ladies are doing and have to keep going back while writing this to see who's having what but wish everyone good luck with tests and chemo this week - Nico think you'll be having your second soon so good luck with that xxx

[Sarahd-1]

The constant appointments wear you out as well. Is Hickman line the same as a picc line? Im having mine put in on Thursday. I hope they dont delay it im on honey and lemon at the moment and hope that its all gone by Thursday I feel ok in myself and Ive been a bit like you carol ive been doing alsorts today. But my husband and son are off to the football tonight so I will have the place to myself so my nails are getting a makeover. My grammar is always terrible on here so dont worry Lisa. I worry about everything too and I was told by the G.P that its because I put too much pressure on myself to get things sorted which I do. Hope you are ok after dentist and heart scan. Im getting my self in a pickle as I have a Liver ultrasound tomorrow. Have you been allowed to come home yet Carol. I hope I havent missed anyone out since my operation my family are calling me mush head because I have to write everything down now as I forget xxxxxx

[Blondeambition]

Don't worry Lisalouw....this isn't the time to be worried about grammar. Well done on surviving the Hickman line. I can imagine it's uncomfortable but I'm sure it'll ease. I'm not sure if I need one of those yet. Seeing the chemo nurse tomorrow.
My anxiety is in over drive too. I'm awake most days at 4 am worrying about absolutely everything. Appointments make me anxious and I have 7 in total this week!
Hope you're line feels ok soon. xx

[Lisalouw]

And maybe I should read my posts before I send , grammar shocking , oh dear , ha ha xxx

[Lisalouw]

Oh no blondeambition, I can sympathise with the dentist , I'm always having problems with my teeth , and this god awful disease makes you diagnose every other condition , I'm constantly thinking I've got something else which is going to cause problems with chemo , it's like the anxiety goes into over drive , why do you think you have a heart condition , I know they do heart scans before treatment sometime as routine especially if you having herceptin , I'm back on ward now had my Hickman fitted , not the best experience I've been through and I can feel it tight in my neck , yuk , I've just been made a very very strong coffee so I might be buzzing about in a short while , I have my pre assess tom and chemo date fri 21st , my sisters birthday , I'm not so keen on having the chemo so soon to having this line in but they say it's fine , I thought they would have let it heal first .
Hi Sarah , they may delay your chemo if they think you could have an infection , have a word with the chemo team they will be able to advise you , I had a sore throat and sinus problem so on antibiotics at the moment , I think the stress runs is down .
It's difficult to read the names of you all on my phone I have to keep scrolling up all the time so I apologise in advance if I get muddled of names spelt wrong , xxxx

[Blondeambition]

Stay strong Carolec. This bloody horrible time is sent to try us and there are undoubtedly blue skies ahead for all of us....there must be after all of this!! xx
Lisalouw - hope the bone scan went ok. I'm sure your little one was extra happy to see you afterwards.
Hope your cold is better Sarah.
I've been to the dentist today for two fillings pre-chemo and after 6 anaesthetics I could still feel the drilling! I had to have a temporary cover put on them until after chemo has finished as there wasn't time to investigate why they couldn't numb me properly. I then got soaked walking home as I still can't drive due to mastectomy op. I've got my heart scan on Thursday afternoon and am now stressing that I've got a heart condition....basically I also feel very sorry for myself! I'm going to make us Shepherds Pie for dinner to cheer myself up.
Hope the rest of you are feeling ok. xx

[carolec]

Thanks Sarah - now I'm being made to relax but bit bored - hopefully will be out of here tonight.  Taking paracetemol but might ask for something stronger and antibiotics for a sty that has become badly infected - I never usually suffer from anything really and feeling a bit sorry for myself.

Lisalou you poor thing being separated from your young son but hopefully they will have good results soon on your bone scan  I'm not having TAC but I'm sure there will be other ladies on here who are or one of the other ladies who have been through chemo sometimes pop over and give some very really valuable tips.

good luck to all those starting first chemo this week xxx

[Lisalouw]

Hi everyone , I had my bone scan yesterday so had to spend a day away from my 5 yr old boy which we both didn't like , it's makes you radioactive for the day , and now I'm waiting on my Hickman line fitting , it's all go isn't no wonder we get run down , chemo fri if my assessment goes ok tomorrow , this will be my second experience of chemo , so I know a little of what to expect , which doesn't really help the nerves , in fact I'm worse this time round , my surgery was bilateral mastectomy , had 2.2 cm stage 3 , hope everyone doing ok , it will take me a while to get to know everyone , I don't think anyone else having TAC chemo are they ? Xxx

[Sarahd-1]

Aww carol. So you had chemo on Thursday and you were doing all these things the day after? You are one brave and strong lady. I'm so sorry that you are in hospital. How long have they said you will be in there for? I hope they won't keep you in there too long. I think it's a woman thing when you have got things to do you want to get them done I know I'm the same. Are they giving you some nice painkillers? Keep strong and you will be out of there in no time xxxxxxxxxxx

[carolec]

Thank you now hoping the GCSEs are ok - sarah I had a bit of a cough and cold and they let me start but suppose depends how bad it is.  I've had a bit of a set back.  Chemo Thursday and running around Friday and Saturday - shouldn't have overdone it - Sunday arm looked a grey colour and painful lump under arm near armpit so went to GP yesterday and referred to Hospital and spent most of the day waiting for tests.  All ok but final scan revealed blood clot at port so admitted and now having a drip for 20 hours to disperse it and then have to inject myself with blood thinners are 3 months - hate needles!  Boring just lying here doing nothing. Have been told this is unusual and not the same as a dangerous dvt in the leg otherwise would have had more drastic treatment - just such a pain but have been told it shouldn't delay chemo so role on Thursday xxx

[Sarahd-1]

Hi ladies how are you a this morning? Congratulations to your daughter for her a levels carol. How are you today brave scholar? And bibi 44? Woken up with a sore throat and a ulcer on my tongue! My son down with a cough and a cold. I know I will need to see g.p but can this prevent me starting chemo? Sorry to ask more questions ladies i know you all enough on your mind xxxxx

[bravescholar]

Yes, Carolec, GCSE results due on Thursday for older boy. Fingers crossed, and well done to your elder daughter on her A levels. I signed the consent form for chemo today. Hair cut tomorrow and all systems go for Thursday. Good luck with the rest of yr chemo.

[Sarahd-1]

Good luck for the 27th big hugs. Hope your bone scan went ok today Lisa xxxx

[Sarahd-1]

Hi forestidelady that is a huge help:) thank you I really appreciate your advice. I've had a call today to say they are starting on the 26th now and not the 24th! I know it's only 2 days! But when you build up knowing what day if you know what I mean. Hope you are all ok today xxxxxxxx

[forestsidelady]

Hi SarahD-1 

I was diagnosed from a routine screening with grade 2 lobular BC in the R breast on 15/6 - shock! Horror! The surgeon would have done a lumpectomy but I requested a bilateral mastectomy - family history, future difficulties possibly in detecting  any further cancer and the fact that lobular is more likely to occur in the other breast - my surgery was 6/7 and I recovered very quickly. I have no regrets about my decision. In fact as time goes on I am more convinced it was so right for me . I am a very fit 66 with no other health issues. The pathology after surgery showed no cancer in the other breast, 2cm grade 2 non aggressive hormone receptive  tumour in the affected breast, and 1/9 lymph node involvement. I have just started on 6/8 6 cycles FEC-T. The anticipation is worse than the actual experience. Some one on this forum said that it is like a very bad hangover for a number of days - everybody is slightly different. Follow the instruction re the sickness medication, be prepared for a few days out of action and keep focused on the end result - you will triumph over this beast! Tips - biotene moisturising mouthwash for the lack of saliva, take the constipation medication before you think you have a problem and keep taking it until you feel your body is back to normal, fresh soft fruit and yoghurt which is easy to get down when you have little appetite. I found the good old standby of toast was hard to eat as I couldn't chew and swallow easily with my dry mouth. When you start to pick up try to get some exercise and fresh air - makes a big difference to your well being. My next cycle is 27/8 so enjoying this time now when I feel "normal" before the next time - I think it is good to take each phase of this journey a bit at a time - deal with it in chunks and don't frighten yourself by extrapolating too far forward. This day last week I was feeling uck and today I am going out to play a few holes of golf - so there is life to be enjoyed! I hope this helps and do get in touch if you want any other information. Good luck for your first cycle

[Bibi44]

Busy week Lisalouw! A few people have said the worst bit is the worry before you start. I know I am in panic/stress warp 10 at the moment. I wake up in the middle of the night with chemo drug names swirling round my brain & I don't think that's quite what they mean by 'chemo brain'! I was so pleased to get out of surgery ground hog day (2 ops in 2 weeks), but then suddenly remembered what comes next.. . . 

all the the best with everything xx

[Lisalouw]

Hi ladies wondered if I could join your group , I should be starting chemo end of august , I'm triple negative with node involvement , so it's 6 x TAC and clearance after chemo , I've to have a bone scan Monday , Hickman tues and chemo maybe this fri , I've developed a sore throat though , typical so not sure if I'll be able to have the Hickman fitted or the chemo , be nice to chat to people going through the same thing as I'm a nervous wreck most of the time xxx

[Sarahd-1]

Hi ladies I have been talking to some lovely ladies on a Facebook page called flat friends I asked them for some tips and they suggested to make sure you have an overnight bag packed at all times just in case your temperature goes up. I thought it was a really useful tip. Hi bibi44 so sorry you have had to join us. I think we maybe on the same I'm having 6 treatments of FECT. We will all try and support each other through this. Big hugs to you xxxxxx

[carolec]

Good luck for weds Bibi44 - my understanding is the 6 sessions are usually fec-t or another combination which a lot of ladies have every 3 weeks and some of us have 12 weekly paclitaxol instead, which I was told is a weaker chemo but unfortunately every week and can be given to lower stage/grade ladies.  I've never tried hypnotherapy, but it certainly sounds worth a go.

bravescholar - it's hard isn't it having to tell your kids - I found that the worse too - and also hard to have to tell parents.   I think we all try and be strong for them when inside we're falling apart and that's what's good about this forum as we can all relate to each other's problems.  Your eldest must be getting his GCSE results next week same as my youngest daughter - my eldest daughter did well with her A level results last week and has a place at her chosen uni so thats good.

good luck for next week everyone xxx

[bravescholar]

Good luck, bibi44. Re telling my kids (boys, 16 & 14), I started crying before I'd managed to say a single word. After I told them we just all sat there in silence hugging each other and crying. That was much tougher than telling my parents, which was tough enough. Right, that's my dose of self pity for the day!

[Bibi44]

Hi all in the August group

Sadly I will be joining you all for this lovely journey via the Marsden, Surrey if anyone else is based here.  I had a stage 1, HER2/ER +ve BC & like a few others this month was told I only need the chemo to get the Herceptin working.  After my op, I was upgraded from a grade 2 to a grade 3, which was totally gutting & like being diagnosed all over again. They said I would probably now have been advised to have chemo anyway, although no nodes involved.  So off to the Marsden on Weds to hear what I'm in for at the end of the month.  Slightly disturbed to hear the other HER+ ladies are having 12 treatments . . . I was told 6 by my surgeon, but may well be joining you for the marathon.  That's quite a lot of freezer time for the cold caps! 

Good luck every one.  My thoughts are with you all.

lxx

ps someone advised me to get hypnotherapy to help with the ice caps . . Has anyone tried that? I gave up smoking via hypnotherapy years ago & I think if it can help you break a really bad habit like that, maybe it could work??

[Sarahd-1]

Hi ladies it sounds like we are all having different treatments. It must be so tough to tell your parents. I found it so hard to tell my kids. I lost my dad last September nick and like you glad I didn't have to tell him. Good luck for weds we will all be thinking of you xxxx

[Blondeambition]

Hi Poniente
I am in Pontefract so not a million miles from you. I've had my treatment at Pinderfields so far and it will be Pontefract for the chemotherapy. Best of luck with the line.
Brave scholar - telling my parents was one of the hardest bits for me. It's horrible. I could see my mum just wanted to take the pain for me and was asking herself why it was me and not her. I'm sure the more information you can give them the better they will feel about it. Often the fear of the unknown with cancer is worse than the reality. Hope it goes ok. xxx

[NicoFischer]

Hi Bravescholar (love the name, by the way!)

It is tough telling elderly parents. I think they feel the proper order of things has been breached & it's upsetting for them to be unable to take this trouble from you onto themselves. In my case, it's just my mum, as dad died last September & actually I'm glad he never had to know about this. I hope you are able to spend a pleasant weekend & that you enjoy your cooked breakfast!:-)

Good luck with your first chemo on Wednesday.

Nico xx

[bravescholar]

My chemo starts on Wednesday. I asked my oncologist about PICCs, etc, but says she wants to try my veins first. Let's see how it goes. I've come up to Glasgow from London this weekend to spend some time with my elderly parents before I start chemo. Am planning to run through all the details with them this morning, which will be sad. On the upside, I'll have bacon and eggs cooked for me!

[bravescholar]

Is anyone going to be having the same or similar treatment as me? Neoadjuvant chemo AC-T (eight two-weekly cycles), then mastectomy and lymph node clearance?

[NicoFischer]

Hi All

Poniente - I didn't find the PICC line insertion too uncomfortable. They always offer to top up the local anaesthetic. I'm not bothered by needles though. It did feel a bit weird at one point when I got palpitations but the nurse said it was a good sign of the line being in the right place. She withdrew it a bit & the palpitations stopped. You have a chest xray to check the position & it was right first time for me. It was a bit sore that evening but fine by the next day when I started chemo. It didn't take that long to insert the line but I was in the unit for a few of hours I think, waiting for the nurse & also having a talk about the whole chemo process. The pharmacist also came to see me while I was there, which meant a bit of a wait. I had a bed to relax on & could help myself to drinks & biscuits, so it was fine. I was offered lunch too.

Sarah - I will be having rtx in the new year (time off for good behaviour?).

Carole - yes, I did have a bit of a glow for the first few days from the epirubicin. I quite liked it, as it made me look healthy! 

Should I have been offered a wig fitting? It hasn't been mentioned so far. Not sure I want a wig but it would be nice to be offered the chance or given info.

All the best to new starters.

Nicoxx

[Val235]

I start mine on 28 August in Calderdale anyone else in this area. I am having my PICC fitted a few days before. It's been a whirlwind but we all have to keep our chins up. Dreading the PICC line being fitted I am a complete wush and needles well my legs just buckle. Has anyone had one fitted how long does it take and does it hurt. I had my mastectomy lymph node clearance 16 July. The operation went well and I am healing well. I am having EC 3x3 then taxol finish 4 December if all goes to plan

I asked to try cold cap but because I have COPD oncologist said I would not stand the cold so I have been on line ordering headgear etc. roll on Christmas!!