Anyone starting chemo August 2015?

[carolec]

Golf club not gold club - fat fingers! Xx

[carolec]

I agree Bibi there are a lot of insensitive people out there - you shouldn't feel guilty about the lady at the gold club as sounds like she deserved it!  Glad you're doing ok on the weeklies - I had some neuropathy towards the end but they reduced the dose slightly and a few other SE's but as you say the weeklies are kinder on the body.  Hope you're feeling better this evening Sarah debs and Lisalou and Lisalou hope your little boy gets better soon.  Brave good luck for tomorrow - can they leave your crowns until after your op or is it something that needs to be done now? X

[Bibi44]

Hi Carole I feel pretty bad saying this, as everyone else seems to be feeling terrible on T, but I am absolutely fine on these weeklies, with no side effects at all yet, except feeling a bit knackered on the evenings of days 4&5. Feel back to normal again, played golf today & got the green light to start gentle tennis with kids balls again yesterday (take note Brave). For me at least, the move from the ghastly F/EC to Taxol has been a Godsend.  I know they are supposed to be cumulative, so may get worse later. Still cold capping.  HB estimated I have lost 40% of my hair (I would have said more like 60%), but still passable after a wash. Sorry you've found it hard with people at work.  Some woman at the golf club got all aggro with me today because another lady was kindly doing my drives.  I tried to fob her off with 'some special arrangements have been agreed for me' & 'I am finding it hard to drive at the moment' but she kept saying 'why should you be allowed to do that', tutting me (old cow!) & saying 'it's against the rules' so I zapped her with my cancer card & that shut her up good & proper.  She couldn't have been more grovellingly apologetic.  I ended up feeling awful about making her feel bad in the end.  Anyway, I've come to the conclusion that a lot of people are just mad & rude or both. Hope everyone starts to feel a bit better soon & apologies for being a bit chirpy at the end. BBxx

[Lisalouw]

Hi debs sorry you having such a bad time , I'm on T also as well as too other chemo drugs , I've just had my 5 th , I found it so hard going , my onc did reduce mine so maybe if you explain how bad you feel , as for the low mood , I get it every time , it's normally the come down from the very high dose steroids you have with T , it should start to clear for you hopefully xxx
I'm still having a hard time with my mouth , ulcers, pain and general bad taste , my neuropathy bad today too , wearing gloves indoors at mo , im normally picking up by now day 12 so not sure what's going on , I am tired though as my 5 yr old came home from school yesterday and was sick , and through the night , so I've been up with him most of night , poor thing , and now the paranoid feelings of waiting for me to get it now are kicking in , I can't wait for all this chemo to be over for us all
Invisible tattoos, wow , they didn't exist 3 yrs ago , I've got 3 black spots , all the best to everyone , I think the chemo is accumulative and is starting to wear us down abit , hugs to everyone xxx

[bravescholar]

Thanks! Have just been to dentist and have found out i need two crowns. 😞

[Sarahd-1]

Good luck for Wednesday Brave. Huge milestone for you xxxxxxxxxxxxx

[Debs30]

Thank you Sarah and Brave xxxxx

[bravescholar]

Wishing you strength, Debs and Sarah.xx

[Sarahd-1]

Hi debs so sorry you are feeling so bad. T does wipe you out! I've been in bed pretty much since Saturday afternoon until today. It's clearing now. I know I had a very low mood on the half way mark so for you it must be so much worse Hun to find out it wasn't your half way mark. You will feel so much better by the weekend and we are behind you all the way. Try and get up do a little something then go back to bed for half an hour. I think moving around does help with T. Big hugs. Xxxxxxxxxxxx

[Debs30]

Hi ladies, hope you are all doing ok

Well I would prefer the Fec as opposed to the T any day. I have been totally wiped out since Sunday morning . I feel absolutely awful and I also feel sick . To be honest I am not coping very well with this one at all and it is the first of 4 so I dread to think how each subsequent ones will affect me . 

My mood is the lowest it has been since the start , I actually for the first time feel very sorry for myself. I hope tomorrow will be a better day !!.

Love and hugs to all of you xxxxx

Debs

[carolec]

Bibi thanks for the info about invisable tattoos - I'm going to ask about them on Thursday when I go for my marking up, rads planning and ct scan. How you doing after your 3rd chemo and are you still using the Cold cap? The cold cap is hard going with the weekly taxol but worth it in the end.
Brave glad you can have your chemo - good luck for Wednesday xx

[bravescholar]

Thanks, Bibi. Your final session will come soon enough. This week seemed such a long way off when I had the first session in August. xx .

[Bibi44]

Ps ta for info on the scan Richelle.  Hope all going well at your end xx

[Bibi44]

Final chemo . . . Can't wait to hear those 2 words directed towards me (9 still to go at this end😩). All the best for your last one & may it zap any little blighters left standing xx

[bravescholar]

Scan for rads? Way too far in the future for me to think about! Got my final chemo session on Wednesday after all, then surgery on 19 December. Onc and i agreed i should go ahead with final chemo as nerve problem in feet appears not to have worsened, or if it has, not by much. All the best, everyone.xx

[Richelle]

Hi Bibi and Tania the oncologist told me the scan for rads was to take exact measurements of your breast so they radiate in the right spot, the scan will show the excised area, that's also why they also advise you not to lose weight once done as it shifts out the readings. They never mentioned gaining however although I imagine it's similar so no dieting for me lol 🍫

He said if not right they will repeat as they will not risk radiating the wrong area so some reassurance.  Hope your keeping well xxxx

[Tania786]

Hi Bibi, Yes, i was told the same about the invisible tatoos. I'm not too sure about the scan either. 😟

[Bibi44]

Hope it went well Brave.  No.3 paclitaxel down the hatch today. Also had my rads chat & when I said I don't want to be tattooed, they said they have invisible ones that can only be seen under UV light so have opted for those.  Thought it might be worth mentioning. Does anyone know what the CT is for at rads planning? I presume the surgeon must leave something in there as an X marks the spot, but don't remember him saying that. Does anyone else? Hope all feeling well today xx

[bravescholar]

Thanks, Bibi. I definitely want my final chemo session. I'll be gutted if the oncologist decides tomorrow i shouldn't do it. Best wishes everyone.xx

[Bibi44]

Thanks Lisalou. I think if we are prepared to still feel tired/not feel our normal selves for a number of months, it will mean we don't try to do too much & then get frustrated. I was wondering if people get down after because of the sheer length of time all this treatment takes & you just get a bit blo*dy fed up of it all eventually. A lady on Oct says she still needs a sleep in the afternoons & she finished in April. Sorry your mouth is so bad. I do sympathise, as mine was terrible in the first cycle with c. 50 ulcers from behind teeth to back of throat, although seem to have got it under control with subsequent cycles. I just gargle like mad with 4 different things & clean teeth after I eat anything. Not sure if yours is candida rather than mucusitis, as you mentioned fluconozole. Have so, have you tried nystatin?

LisaJ I'm not sure whether my hair could really be considered a 100% cold cap 'success' as very thin now, but do still have 100% cover with no bald patches. It looks passable after I wash it for a couple of days.  I wear a scarf now, which drives me mental as itches, because my head is too cold & I am washing it less often (like once every couple of weeks . . Scuzzy or what . . But I seem to lose so much when I comb through after the wash, that I decided to preserve them for cold cap insulation). The weekly Pax is very easy on your body, but it's tough in terms of the ice cap . . Still got 10 to do! I want to carry on for the duration, but it's getting harder with less hair . . I can't really tell if I have regrowth on my head, but I could definitely do with some ha ha.

Brave good luck for tomorrow. I don't know if you're hoping you've had your last or want another for prevention purposes, but good luck either way. Xx

[Lisalouw]

Thanks Tania , I've already got the diflam mouth wash and spray which is ok for my mouth and back of throat , but it's sore deep in my oesophagus so not sure what I can do for that , I'll keep taking the painkillers , I know last cycle I got my fluconazole doubled and that did seem to help the sore throat , I'll ring them up tomorrow if it's not better , my bloods will be low , I always go neutropenic despite the injections I have so my body will be having a hard time trying to get rid of anything , also I was meant to have 80% dose of chemo , but by mistake I was give 2 lots of the drugs at 90% and one lot when it came to light at 80% , so that's maybe why I'm not picking up as good this time , might ask for the gelclair though thank you xxx

[Tania786]

Thanks Bibi, Carolec.

Hi Lisalouw, i had horrible taste for a week or so and for the mouth thrush, onco gave me gelclair sachet to rinse my mouth. You can ring your onco and ask for difflam spray for sore throat and difflam mouthwash. They should help with your sore throat etc. I hope you feel better soon.

Take care everyone!

[Lisalouw]

Hi everyone
Bibbi , it took me quite a while to get back to normal , but everyone is different , I wasn't mentally as sharp , that never really came back to be honest and physically I got tired very easy , so it's quite frustrating , also most people round you think your better and back to normal but it just takes time .
I was the same Lisa jane , especially where my little boy is concerned
Today is day 10 , yest was quite a weepy day , fed up with the pain in my side and my painful mouth and throat , pain not as bad today today in side but my mouth and throat are getting me down , tongue painful and can't swallow , feel like food getting stuck , not been able to eat much for days now , and can't taste anything either, grrrrr , hope everyone else fairing abit better xxxx

[lisajane7878]

Bibi I keep meaning to ask how's your hair? I have quite a big bald patch on the top now that I just about manage to hide! I'm sure I can see new growth though! Eyebrows are thinning now. Also has anyone started herceptin yet? I'm going to get heart checked on Tuesday to have my first herceptin next Wednesday with second T xxx

[carolec]

That sounds good Tania and think I'll look into the haven.  Since finishing chemo I've been busy with appointments and I still go there for herceptin injections so kind of feel I still have my safety blanket.  One thing I can't cope with is the odd days I go into work and people ask questions - I'm ok with close colleagues but not people I hardly talk to.  I know they're probably just being concerned and it's just me being extra sensitive so need to learn how to cope with it.  Hope everyone feeling ok this weekend xxx

[Bibi44]

Tania you are nearly there. I wish I had just one more, but I signed up for an extra cycle with these weeklies. I have contacted the Haven too. They seem to be really helpful x

[Tania786]

Morning ladies, good to hear that sone of you managing ok with T.

I've also heard that people find it hard to move on once chemo has finished. I'm not sure how would i feel but definately thinking of getting some help/tips to deal with it. I've contacted The Haven and got my consultation appt next week. I got one more chemo to go and then the rads.

[lisajane7878]

Bullet even! X

[lisajane7878]

That's my worry now! How do we ever feel normal again!! I'm sure we will though as I compare how strong I feel now to that dreaded first two weeks when all I thought about was leaving my poor kids without a mummy!!! Does anyone else have really mixed feelings about Christmas? I'm so excited and am really organised this year with not working but yesterday I heard some Christmas songs in s shop and it was like someone put a billet through my heart!! Xx

[Bibi44]

Thanks Lisa that's really helpful. They also said it takes you a lot longer to get back to normal than you expect, which is also frustrating. Did u find that? When did u feel pretty much like you were before? Sorry u r having such a hard time & really pleased you only have one more left. xx

[Lisalouw]

Hi , I've been through the low point after treatment as it's my second time round , I'm afraid after being under constant medical treatment and support , your suddenly on your own with time to think about things and it can hit you , getting back to normal can be abit hard and strange at first depending on what support you have at home , so the counselling after is a good idea , I've still got my pain in right side , taking co codamol for it , I phoned the hospital up and was told just to carry on with the painkillers and go to my doctors on mon for an examination , it's my throat at the moment though that's getting to me , it's coated and I can't swallow food without a drink , it's funny how we all get different side effects , I've found this TAC so hard going , glad I've only one left to go , have a good wkend everyone xxx

[Bibi44]

Debs I am saving my counselling for after chemo too, as I've been to,d by quite a few people who've been through it, that is the real low point. I have to say I'm not sure why, but I'm taking their advice as they've been through it xx

[jhbee]

Debs I am definitely wondering how it's going to feel with no chemo - I can't wait to feel more like myself, but expect that I am going to start getting paranoid about any ache or pain (though I'm pretty bad with that kind of thing already since my BC/ BRCA diagnosis!). I've registered with the Haven and am planning on booking a few sessions of counselling which I hope will help with coping strategies for when treatment is over xx

[Sarahd-1]

Debs so good you are feeling good 🙂 and no nausea is good 🙂 I found on the last one that day 3 was where I was wiped out so that would be Monday for youso be prepared for a day in Bed but again doable. It is good to know that it's only one more time. I don't know if you feel the same but it will be strange coming out of this chemo bubble that has become the norm! And wondering what it will be like back in the real world. Do any if you fe the same? Xxxxx

[Bibi44]

Sarah Just getting your Rads Appt & knowing there is only one more chemo, must make you feel slightly relieved that the chemo phase is nearly over, even if you are still suffering SE of 5th one. I can't see if hair is growing on my head, because I still have some (very thin) hair all over. It's still falling out though, which I thought would stop on Tax, so if some replacements are growing, that's good news for my chances of being able to carry on with the cold cap. Would seem a shame to fall at the final few hurdles. It's snowing here today . . Hub wanted me to plant some tulip bulbs😱 Can't see that happening. Well done Debs . . It's just great to leave pukey old FEC behind isn't it? xx

[Debs30]

Morning lovely ladies

Well after a 2 hour delay waiting for my chemo to arrive I finally got my first T. It was lovely not to have the nausea kick in within the first hour of being home . And this morning still no nausea hooray !. I know there will be other se to follow but not feeling sick is great.

I did develop a small reaction last night , sneezing non stop with an itchy face and runny nose but I am susceptible to allergies and I am fine this morning.

The weather here in Lincolnshire is totally awful this morning and I was looking forward to a nice long walk today , never mind I have quite a lot of tv to catch up on.

I hope you are all doing ok and have a fab weekend . Keep smiling 😊❤️Xxx

Debs

[Tania786]

Hi Sarah - yes my 2nd T was reduced to 80% so was sort of manageable.

[Sarahd-1]

Lisa and jhbee sorry. I have had a lot of hot flushes lisa and I prefer T to FEC I think so far but I dont want to speak too soon. And more seems to be growing I have a little layer all over now. I hope it stays. xxxx

[Sarahd-1]

Hi Ladies Debs richelle bibi and Tania hope you are all ok? I hope I havent missed anyone. Shelley how did you get on? Chemo brain and extreme tiredness have kicked in after 2 nights of not much sleep. Tuna tastes disgusting but so far a few little spasms but nothing much else. Was it RIchelle or Tania or both that you said the T wasnt so bad 2nd time round? I have had my Rads consultation for the 4th of December through. 🙂 Big hugs ladies xxxxxx

[Lisalouw]

I also get the sweating side effect , I get twitching eyes too , right now it's cramping stomach ache and a furry mouth , it's day 7 today so I'm getting abit run down of feeling rubbish , hope everyone else ok , I might be tempted to take some co codamol before bed for this pain , hope everyone else ok xxx

[Bibi44]

Richelle I've had that shivering/sweating thing. I always wonder if it's the start of some infection, but my temp's normal. Must just be a SE xx

[jhbee]

Hi all,

and thanks Lisalouw for the info. Had weird aches and pains and sweats last night so ended up taking a Tramadol and went back to sleep quickly! Felt good this morning but a little sick today - this Tax seems way more random than FEC but still way preferable..3 more to go!

Good weekend everyone xx

[Lisalouw]

Hi Tania , I didn't have any swelling around my Hickman line , maybe you should give your oncology dept a ring to make sure it's ok xxx

[Tania786]

Hello ladies, I just logged on to see how everyone's doing.

Hi Shellyjenks - i had my Tax reduced by 20% for the 2nd cycle. I had really bad SE with the full dose. I must admit reduced dose was sort managable with paracetamol. I took ibuprofen only once when I couldn't handle the pain. I'm sure you will be fine.

Hi Richelle - Thanks for letting me know that a nurse visited you to flush/dressing the hickman line. I don't think they do it in my area in London. I got it sorted yesterday. I notice some swelling at the back of neck and shoulder on the same side as hickman line. Is it normal? I asked my hubby to check and he said it's not very obvious.

I've also got an appt for the scan couple of weeks before the radio.
Good luck everyone and have a good weekend! Xxxxx

[Richelle]

Hi ladies my hair has also started to grow a fluffy down but you can definitely see it although it looks very white 😳 omg is this me a silver fox at 43! 

I had some weird SEs of my last T on Weds night, cycle after cycle of five mins of freezing cold, five mins of profuse sweating, then five mins of what can best be described as full body spasms felt like I was in shock, it lasted for 2 1/2 hrs and was so awful I woke my husband up to see if I needed to go to hospital but then just like that it stopped and just had shivering and flushes- you couldn't write this chemo script!

Can't believe its the weekend again, wishing you all a comfortable one, one wrap up and stay well xxxxx

[Bibi44]

Just remembered they also said get minoxidil from Boots which promotes hair growth x

[Bibi44]

Good luck Debs. Got to the unit early today for bloods  & was the only one, so sat round chatting to the nurses about our magical appearing/disappearing hair quandary.  They said it comes back for some & not others on Tax, then stays for some & not others.  So basically anything could happen! They also said it's not automatic that your eyebrows/lashes fall out after Tax finished, some keep theirs, but more scarily if you do lose them, sometimes they fall out again after they've regrown. Have a good weekend all. BBx

[Debs30]

Hi ladies

Today's  the day of my first T . Dosed up with steroids and eating anything I can get my hands on . Did mange 7 hours sleep last night after first steroid dose , didn't expect to sleep at all.

Feeling a bit apprehensive but want it over with . Hoping to manage with just paracetamol and hot water bottle once se kick in . Have got tramadol but want to avoid them if I can.

I hope you are all ok and manage a good weekend . Love and big hugs to all of you xxxxxxx

Debs 

[Sarahd-1]

Good luck shelley for today. Liposils looks like a mascara bottle and it has 2 different brushes for eyebrows and eyelashes and I put it on every day. It worked for my friend and she kept all of hers sadly it hasnt worked for me. Its quite expensive and this far down with your treatment for the price I wouldnt bother. My wig covers my eybrows quite well so that wil have to do for now. Hope eveyone is ok today I am exhausted 2 nights of lack of sleep. But my friend is coming round tp spend the day with me today an we are going to chill out to a relaxation cd. I hope i hope I will be asleep in seconds 🙂 

[Bibi44]

Good luck Shelley & hope you are not too exhausted Sarah.  All the best for the side effects over the w/end next week. Xx