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December 2016 Starters

Evie-S
Community Champion

Re: December 2016 Starters

Rooner - I found my feet were the worst with T. They were fine for cycles 1 and 2 but I could hardly walk for one day about a week after 3rd T as the skin on the sides of my toes went sort of raw, so hurt if the toes touched each other. I moisturised them madly and bought hideous toe socks to stop the skin rubbing and they are now much better. Hands were dry but not so bad. The rest of my skin I treated as usual, moisturised but not as much.

 

I always got a furry white tongue for the first week - which I thought was why food tasted so bad, but it went once I started the Fluconazole. Don't know if it was thrush or whether it was just time that changed my tongue back to normal (or semi normal).

 

At the risk of TMI - I always had constipation first few days, so was told to start the Movicol (laxative) either the day before on on the day of chemo "to get things moving". That helped for cycles 2 and 3.

 

I also found my aches were in my legs, especially thighs - have never been sure if the chemo or the bone marrow injection (can't remember the name of it). Hideous while they lasted but mercifully relatively short lived. I don't want to sound flippant, I know what you are going through and want to reassure you they do pass. Hang on to that thought. Curl up under blanket, with cats etc and get well.

 

Evie xx

Cookiepuss
Member

Re: December 2016 Starters

Thanks Evie - I have the sore neck and throat as you described. Am regularly mouthwashing which lasts for about 10 seconds. I've got some fresh pineapple - is it better frozen as it's tasteless at moment?

Other half is trying to tempt me with food but nothing appeals.
fiddlercrab
Member

Re: December 2016 Starters

Rooner - I just had some dried pineapple. Amazing! Tasted exactly as it should! I might be picking the frozen out of the 'yellow smoothie mix' later.

fiddlercrab
Member

Re: December 2016 Starters

Cookie - yes, I was aching yesterday and the day before (days 4 and 5), mostly just below my knees and above my ankles, although a bit in my thighs too. Wasn't sure if it was the T or the filgrastim (which is new for me this cycle), but it's just a niggle today so guessing T. Painkillers and a microwave heat bag helped me. 

 

Evie - interesting that you had a sore throat too, seems to be quite common, which is good in a way. I am checking for white stuff on my tonsils but no sign, just a furry tongue. 

 

I am keeping notes of the SEs so I can go through them all with the onc before the next cycle and see how many more drugs I can get out of him *sigh*.

 

Had a horrible nights sleep last night too, kept needing the loo despite thinking I hadn't drunk enough yesterday. Do steroids make you hold on to water? Because I think they let go... I know they can make you puffy.

Rooner999
Member

Re: December 2016 Starters

Thanks for advice Evie; really helps having your insight into T. In terms of moisturising; should we be doing all over body or just hands and feet?

I have some aches a pains, mainly breast bone, shoulders and arms. Tinned and frozen pineapple has been my saviour today but off to pizza express tonight as it's half term. Been on the loo a bit but makes a change from not being able to go with the FEC!

Cookiepuss
Member

Re: December 2016 Starters

Does anyone have the aches and pains? I'm on countdown for my next lot of painkillers! Everything tastes horrible and no appetite at all.
Evie-S
Community Champion

Re: December 2016 Starters

Hi Everyone

 

Busy thread again. Sorry to hear the T effects are kicking in. As you have all so kindly advised and reassured me about FEC may I offer my T experiences to you. Days 4 and 5 were always the worst for me so far as the aches and general yukness were concerned. Hang in there and they should ease and go after that. For cycles 1 and 2 I felt much better generally from day 6/7 onwards.

 

Taste - the first week was the worst. I was just eating for the sake of eating, but nothing much tasted of anything. Taste started to come back for some foods after a week, but strangely enough sweet things didn't taste good (I guess my body teling me something!) I think I may have said that I developped an addiction to tartare sauce as that was one of the only things I could taste. 

 

For all 3 cycles I had a sore throat and neck aches for some of the first week. The first cycle I actually had tonsillitis on top (and some strong antibiotics as a result), but I still got the sore throat for the other 2 cycles too. Again it just disappeared during the first week.

 

Fiddlercrab - thank you for your reassurance and good advice re FEC, appreciate that. I am taking WMJ's advice and not looking further ahead than today. My exciting day has been taxi driver for my daughter, then going out with her while she trains for Race for Life (I walked, she ran) and the highlight is a heating man coming to fix the heating. 

 

I am out of sync with most of you as I don't have FEC til Friday - so am sending you all lots of get well hugs. Great photo Agarside - gorgeous cat/panther and onesie!

 

Evie xx

fiddlercrab
Member

Re: December 2016 Starters

Mine are going too. Stuff tastes normal-ish at the back of my mouth but everything is weird on the tip of my tongue. Currently sucking M&S sugar free rhubarb & custard sweets which are OK so long as I keep them in the middle of my tongue. My own lips taste weird! 

Rooner999
Member

Re: December 2016 Starters

Sal - just had some frozen pineapple..it was yum..not massively strong but I could taste it 👍🏼
Agarside
Member

Re: December 2016 Starters

Cookiepuss:  Frostie is actually quite small - we have a half Maine **bleep** "Jerry" who is much bigger, but he doesn't like me anymore... 😞 although usually a very affectionate cat! My DD2 has set up a FB page for cat lovers "living with cats" it was part of a homework and is all about our 6 cats!

 

Day 5 post chemo is Big Mac night!!  the one thing that still tastes like what it is supposed to, I am still on FEC so hoping it won't be too bad on T, family will be gutted, only time I buy Maccy D's...Lol!

 

Have got some work done this am, now for NCIS...:-)

 

 

SALowery
Member

Re: December 2016 Starters

Oh me too Rooner everything tastes disgusting, feeling really fed up
Snail888
Member

Re: December 2016 Starters

Agar side I love cats! Mine has also started sitting on my chest especially when I'm on the sofa! Still waiting heart scan results. I think I'll have to assume everything is OK if they do the call me. Still retaining lots of fluids and hands are very swollen. Hope we have a better day xx
Rooner999
Member

Re: December 2016 Starters

Omg! Tastebuds gone with a vengeance! Mouth feels like the underside of a flip flip! I'm such a foody, this is going to be a bad SE for me. Anyone found anything strong enough that you can taste?
Cookiepuss
Member

Re: December 2016 Starters

That's not a cat Agarside, it's a panther!
Agarside
Member

Re: December 2016 Starters

Lol I have the house to myself.... but being constantly "hassled" by one of my 6 cats... Frostie!

He never really took any notice of me before chemo, but now constantly by my side and wanting to lie on my chest... weird lol...

 

A

x

 

20170213_130027.jpg

Running girl 53
Member

Re: December 2016 Starters

Sounds like quite a few of us feeling the same so a comfort to know its normal. Feeling pretty irritable today. Not good at sleeping during the day and house like euston station! Everyone at home so nit getting much peace! You know when you just want your own company. Grouchy, grouchy, grouchy!!!
Cookiepuss
Member

Re: December 2016 Starters

Morning everyone - well the aches and pains are here with a vengeance. Feels like I've been thrown off a 10 storey building, driven over by a steamroller and now someone is playing "whack-a-crab" on my body. It's an effort to even get up off the sofa. Have taken painkillers which has eased it a bit but am not up to working today.

On top of that had to resort to Movicol as very uncomfortable (sorry if TMI). Good job we have a spare loo as feels like I've been sitting there for hours!

Food tastes of nothing - cotton wool would be tastier.

Hopefully feel better tomorrow x
fiddlercrab
Member

Re: December 2016 Starters

Yes, I've stayed at home. I am not allowed to actually go to work because of the risk of infection, so I am working from home when I feel up to it, and getting quite a lot done! I had plans for this week but I will put them off for a day or two. My work are pretty generous with sick pay but I am anticipating needing more time off when the surgery comes around, so saving it for when I need it (although I could have just gone off at diagnosis and no one would have minded, I'd have gone nuts though!)

Agarside
Member

Re: December 2016 Starters

I to had an awful nights sleep, but I really want to do something productive today so fire lit and on sofa in my "Snowflake" Onsie!  I think it is my ears and sinuses, fluid seems to be moving about a bit causing the left side of my face to ache, think this was keeping me awake....

 

Ref sick pay, have a look at https://www.gov.uk/employment-support-allowance/overview  details given to me by a fellow member on this forum, I put in claim for 1st Jan, only to find my emloyed employer (I am employed and self employed) decided to pay me SSP for 6 weeks, but it means I now have to redo the whole thing again, but should be entitled to this as well after SSP is finished...

 

Have a good day 

A

xx

WMJ
Member

Re: December 2016 Starters

I hope you have stayed home fiddlercrab, you definately need to rest.  I had an awful sore throats and dry cough last week, but no temp so hoping you will be okay. I was assessed before my chemo and told it was viral, which takes it out of you at the best of times. So please rest.   I too have dreadful wind, feel sorry for my OH, just keep saying sorry about that hun must be the chemo! Lol.  

 

Running girl 53, sorry to hear you had bad night and your cold maybe returning. Sleep can be a bit of enigma for us all and makes the days long when you are not up to doing much. Hope you manage some sleep and enjoy a restful day. I know you are not complaining but I think it is awful you are no longer getting any pay when off sick, this isn't just being off sick as far as I am concerned, it goes way beyond that and no way you should have been feeling guilty.  You ladies who manage to get into work whilst going through this are heroes. 

 

Hope we you are feeling better today Jacquie48.

 

Remember ladies one day at a time, although it could be an hour at a time or even a minute, as things ( how we feel physically and mentally) change quickly for us all and for a variety of reasons. 

Hugs xx

 

Running girl 53
Member

Re: December 2016 Starters

"Aching"limbs!
Running girl 53
Member

Re: December 2016 Starters

Jacqui sorry to hear you are still in hospital i completely understand how low you must be feeling. Really hope they get you stronger very soon. This whole experience is a trial from beginning to end. We have ok days, good days and then bloody awful days. Soon we will be out the other side of this and start to get our lives back. Sending you big hugs. Xx
I like you Fiddlercrab wilk be signing myself of sick today. No sleep since 2 this morning. Combination of snoring hubby, stormy night, acting limbs and i think my cold is back. Desperate for some sleep. No more sick pay for me now as i had so much time off with surgery's, not that i'm comlaining as work have been so supportive. I was quite relieved when they told me cos i feel guilty when i have a day off. But i know what i've got to do to get through this.
Foggy head this morning so not really managing to keep up with thread.
Going to try and get some sleep.
Have a good day all. Xxx
fiddlercrab
Member

Re: December 2016 Starters

Jacquie - Sorry you are still in hospital but at least they seem to be making progress, the scaly peeling skin on top sounds nasty.

 

I didn't make notes and now I can't remember who else I wanted to reply to!

 

I attempted a short walk yesterday but the weather was miserable and fiddlerkid was whinging, so I gave up and went back to my heat pack on the sofa. Then I cooked a curry with homemade naan/roti/bread. Not sure if the terrible wind I have had all night is the result of T or tea...got some digestive 'issues' too... I had a sore throat yesterday (can't remember if I said) but temp stayed normal so they didn't want me in. Feels a bit better today but will continue monitoring temp. Might sign myself off sick today and watch a film or three.

 

Evie - I won't deny FEC was hard for me, but everyone I have talked to says that either one or the other is hard for people, so if T was hard for you, it might be that FEC is not (although I am sure there are people who sail through both and people who struggle with both). Take each cycle as it comes and allow yourself to be ill.

 

I am booked on a LGFB session in March (it's a week after T2, so that's assuming that I can make it there). I am mostly in it for the freebies! I also have an 'education and support' session with the BCNs at some point soon. Not sure what to expect from that one. 

 

Have a a good day, everyone

Evie-S
Community Champion

Re: December 2016 Starters

Hi Jacquie - good to hear from you, but obviously sorry that you are still in hospital. At least they have an explanation and are treating it - really hope the antibiotics work quickly for you. The chemo itself is punishing enough without added extras like infections. Also hope the dermatologist can sort out your skin.

I have heard that T can make us extra emotional - I know it has with me. That's not much of a comfort I know, but may explain the emotional roller coaster to you and help you know it won't last - especially if you are able to change drugs. Maybe paclitaxol is kinder to skin too?

 

I'm probably not the best person to remind you why we are all going through all this, given my earlier post. But what I do know is that chatting on this thread really helped me this afternoon. The support and advice was invaluable to me - including your kind comments just now. You have done the surgery, you have done 4 out of the 6 chemos. You have gone so far down this hideous road to recovery and beating this. Hope we can all send strength to you to get you back on the road again.

 

Love and hugs to you. xx

Agarside
Member

Re: December 2016 Starters

I remembered!!

 

Someone asked if I was taking anything for these pesky periods, Yes!  Mefenanic acid and Tranexamic acid..

(They do appear to be working everything normal)

A

xx

Jacquie48
Member

Re: December 2016 Starters

Evie, we crossed! Xx
Jacquie48
Member

Re: December 2016 Starters

Hi ladies. Busy thread today so I've made notes! thanks for thinking of me and asking after me. In short I'm still in hospital being pumped full of antibiotics. They've decided I have a chemo induced gall bladder infection which then led to the neutropenic state. They have done xrays, scans, blood, urine, stool etc and nothing else has been found apart from surprise gallstones. As the seat of my pain is in exactly that area it seems a reasonable conclusion in the end. Not sure how much longer I'll be here now. Boo. My hands really hurt and are red and swollen. They've sent pictures to the dermatologist to see if it is T induced or something else. My face is scaly and peeling as are my shoulders. Sigh.
Tor, I have to have my Picc line dressing changed weekly at the hospital so it can be a bind but they try to be accommodating. This journey is so hard and I am beginning to strongly resent all that I am missing while I'm going through it. I also know that's pointless but I can't help it. I am extra emotional at the moment I know but I am really quite tearful and angry.
Agarside I hope you're feeling better. I had a total hysterectomy in April so went into surgical menopause. It brings its own challenges but anything is better than the periods I was having. To be experiencing that during chemo must be unbearable. I have also experienced ever increasing sharp stabs at lumpectomy site after each chemo as well as discomfort and cording at the lymph site after each chemo. Oncology and physio don't seem to believe there's a link but I know there is.
Running girl, thanks for your good wishes and stuff about the pamper session. I must book something.
Fiddlercrab I hope you're still feeling ok.
On outings, a new kettle is way up there, Snowdome included! I was allowed out for a walk in the little park opposite the hospital with my partner. It was wonderful to have half an hour of fresh air. So I'm aiming for the top 10 with that one!
Lenny I have now had thrush three times and only once had my tongue been white but I would insist on fluconazole as the thrush makes me so miserable. I feel like I can't swallow and even water is getting stuck in my throat.
Evie, sorry you feel so anxious about FEC. You may well be fine. I am full of admiration for anyone who has got through three Ts. I am struggling at the moment to remember why I need to carry on doing this. I'm definitely going to ask to switch to paclitaxol. Rooner I'm glad you got out and were ok for the birthday boy. I cannot wait to taste good again properly. Also pleased about your hair.
Hope I haven't missed anyone. This is the longest post ever! Lots of love and hugs,
Jacquie
Evie-S
Community Champion

Re: December 2016 Starters

Jacquie48 - how are you today? Do let us know when you are up to it. xx

Evie-S
Community Champion

Re: December 2016 Starters

Thank you so much Agarside, WMJ and Cookiepuss for your tips and reassurance re FEC. So so appreciate that. WMJ - you are right about taking one day at a time, I must do that. I try to, but do need reminding. This whole thing is too big if you look too far ahead. Thanks all of you for that support and understanding. I'm here to offer any advice that anyone needs for T.

 

LennyGK - I was prescribed Fluconazole and antibiotics to take for 7 days starting on day 8 for each cycle of T - automatically given and told I must take whether or not I have any symptoms. Don't know if I will get with FEC or not. Again it seems we all have such different advice and drugs.

 

Agarside - I've not had breast surgery yet so can't comment on the stabbing pains, except to say that I did have a few stabbing pains after my port was put in and they used it for the first time - got the pains for a couple of days after that. Don't know if that helps at all? Doc didn't seem concerned.

 

Looks like Snail888 has won the most exciting day I think! I can't top that. I have managed to actually leave the house for a walk but that's as exciting as it gets...although close call with the ironing and paperwork. We are going to feel so free and liberated once we are through this chemo - trips to the shops etc whenever we want, with no mask, wow.

 

Rooner - you sound happier today, than a few days ago, glad to read that. How exciting about hair growing back.

 

And prize for best comment today to Agarside for making us all feel better about being forgetful. I forget what I am saying mid sentence sometimes.

 

Love, Evie xx

 

 

Snail888
Member

Re: December 2016 Starters

Looks like a lot of us are up and about. I managed a trip to the snowdome without a face mask but I am over 3 weeks from last chemo and waiting on heart results!
Agarside
Member

Re: December 2016 Starters

I have just logged on to add something to my last post that I meant to put in.... but have forgotten!!

 

Hey ho

A

xx

Rooner999
Member

Re: December 2016 Starters

Afternoon all. Chuffed I got through sons birthday and family meal out today. Food tasted the usual even though I slathered in bbq sauce, but the lemon dessert went down a treat. Shoulders a bit achey but nothing major; glad it's no steroids today, might get a proper nights sleep tonight! Day 3 of T and so far all good, hair even looks likes its growing back .. yay!
Running girl 53
Member

Re: December 2016 Starters

Just been to our local to see a couple of friends. Nothing stronger than tonic water and a packet of crisps. But good to get out for a bit. As i shall be hibernating next weekend due to ecpected low immunity i shaln't see any friends for a couple of weeks. Still not long now. 6 weeks and the last chemo will be done. Roll on..... xx
WMJ
Member

Re: December 2016 Starters

Ooh you show off Cookiepuss. A new kettle sounds so exciting, I emptied our bedroom bins earlier and ironed 3 pairs of pjs..... Enjoy the trip to the recycle bin and wrap up warm. X
Agarside
Member

Re: December 2016 Starters

Evie, When asked, you get traavel sick, you had sickness in pregnancy and get it all!!  Emend, Ondasatron and Domperidom, they all worked well for me - the latter two are given out like sweets on our chemo day ward.  Beware if taking Dex, you could spike a temp with Ondasatron and get "hot red face" which is not pleasant.  My sympptoms have not been too bad, it is the "other" underlying problems that I had that have exasparated the situation... my first FEC was not too bad at all... periods and gue ear, then my back pain.... all have added to discomfort with the next two cycles.  But Days 1-4 are pretty sh*t but after that you can get back quite well.... good luck, we are all here to help get you through - as I am sure I will be needing support for my 3 x T's... although I *think* they will want my Hb back to normal ranges, for me, not just "normal"...

 

Jackie, thoughts are with you... hope you are improving as we speak!

 

I am booked on a LGFG day, sometime in May....  Whether I go I am not sure I will need it, would prefer someone going through this who actually needs it to have it.... But interested in online tuitions - but do have a 13 yr old DD who is up to date with all this stuff.. I take it my lashes and brows are going to go in the T cycles...  I still have patches of hair all over place that hasnt all fell out...

 

A couple of things I have noticed this cycly, where my lumpectomy scar is, i have been getting a lot of sharp shooting pains and tingles in this area, also in the lymp node area...  each cycle has got a bit worse.... wondering if just me??

 

This time my chemo vein is very sore, feeling bruised.... luckily no sore mouth or ulcers.

I got to see all my bloods charted and the lowest my neutrophils went is 1.3 and that was with my cold!

 

Family is cooking the Sunday roast, so looking forward to that, and catch up on all the TV I couldn't watch these last couple of days as looking at screens and phone send the room spinning!

 

I have just filled in my freedom of information forms, to get all my mamogrammes from 2015 (2) and the one from 2016 with all the doctors notes, to compare - will be interesting to see if I have the fastest ever growing DCIS/G3 tumour ever....

 

Much love

Amanda

xx

Cookiepuss
Member

Re: December 2016 Starters

WMJ - my husband just asked if I wanted to pop to Wickes with him for some DIY stuff but I declined his kind offer!

 

My most exciting moment was going to Currys yesterday for a new kettle. 

 

I might pop out to the dustbin in a moment to put out some recycling stuff 🙂

WMJ
Member

Re: December 2016 Starters

Good to see you back with us LennyGK. Hoping you are just being superwomen on a part-time basis at the moment! X

I know it is easier said than done & difficult Evie-S but try and take each day as it comes and leave Friday to Friday. Otherwise you are going to work yourself up into such a state and be far too anxious. Remember everyone is different and we all react differently, furthermore we react differently at different times to the same drugs! Sometimes times we are okay with a drug and then other times we are not. Be kind to yourself Evie-S.

 

Hope everyone is having a reasonable day, it has been very dark here today and bitter cold. My treat today was I went in the car to the local tip with my OH.....Gosh my life is so exciting. Anyone else had an exciting day like mine? 

XXX

 

Cookiepuss
Member

Re: December 2016 Starters

Afternoon everyone

 

Bit of a miserable day here so no inclination to head outdoors and just keeping warm and comfy inside.  Still feeling a bit woozy/light headed and have come out with the odd sentence that makes absolutely no sense.  I am just doing my online shopping order but am not convinced that I will end up with what I intend!  Could be an interesting food week.  Feeling a bit achey and a slight sore throat and food tastes of nothing.  I have just had pizza with a load of jalapeno peppers piled on top for some taste but it has just given me heartburn.

 

Anyway apologies if the following is just as confused.

 

Rooner - thanks for the tip re the Opi nail varnish; I have ordered some and will give it a go as it does get good reviews.

 

Running Girl - thanks for the You Tube link and I will have a look at that when I can focus a bit more!  I did have a look some time ago re doing eyebrows but for some reason it seemed to be a lot of drag queen make up demonstrations coming up!   I was looking at the WonderBrow demos but it would take me longer to do the brows than it would for me to put a full face of make up on!  How do people find the time.

 

Agarside and Jacquie - hope you are feeling much better today.

 

Tor - I am getting Herceptin and Perjeta with the T for 3 cycles.  Once the T has finished I will then have Herceptin via injections every three weeks (a total of 12 injections so 15 lots in all) so you don't have to have it through a drip/cannula.  My understanding is that it's a 5 minute job to have the injection.  I am not sure why Perjeta is only for 3 but will ask my oncologist next time. 

 

LennyGK - I got Fluconazole with Nystin as standard for my mouth.

 

Finally, Evie, you will be fine on the FEC.  Just make sure that they give you the anti-nausea such as Emend which worked really well for me.  If that doesn't agree with you there are other meds they can try.  Please feel free to come on and ask for tips/advice as you go through it.

 

 

LennyGK
Member

Re: December 2016 Starters

Thanks Evie - did you have to ring up for Fluconazole or was it one of the meds they gave you to take home? x

Evie-S
Community Champion

Re: December 2016 Starters

Morning everyone. I am starting to get really anxious about FEC on Friday as several of you have said T is proving easier than FEC. Yesterday I too was ready to walk away from it all. Feel like my body can't take any more.

 

Agarside - sorry to hear about your passing out and period. Hope you have a lazy day planned.

 

Running girl - kind of you to share that make up lesson link. I have just watched it - the lady who does it is very good, though not sure if I have the same steady hand! At the moment I'm struggling with make up as my eyes water or I cry so often and the tears sting. But as soon as chemo over I def want to try her tips.

 

JoJo45 - thanks for the varnish tips too. Given my eyes it is prob best for me to do the LGFG course after chemo like you are.

 

Tor, WMJ, LennyGK - sounds like lots of us are in hibernation and desperate to get out into the real world again. I know I'm terrified of catching something after the horrible bug I got during the first T. It's very hard for others not going through this to understand what we feel like going out/hibernating etc, it's so good to be able to share on here.

 

LennyGK - I had a white tongue every time with T, but GP said it wasn't thrush. It disappeared once I started the Fluconazole so maybe it was or maybe it was just time?? Taste also started to come back a bit after a week or so.

 

Love and hugs to everyone on here. xx

LennyGK
Member

Re: December 2016 Starters

Morning WMJ - thanks for asking about me 💕I've been reading everyone's posts but just can't seem to get it together these days to post myself! I know what you mean about wearing a hat in April - it's much easier to pull on a hat in this cold weather when everyone else is wrapped up too! I have to say I'm finally starting to get used to my wig - I've been wearing it with a woolly hat over it and I think it has flattened and looks more natural now so wore it to get my chemo on Thurs on its own and it didn't seem so bad. 

I got my first T on Thursday - no nausea which was brilliant but yesterday the bone pains started (although I'm not sure if this is the chemo or the neulasta injection that's causing them. I haven't had the injections before and my oncologist said I just get one on day two from now on). It feels like jaggy pins and needles all over and I hardly slept all night. I also woke up with a furry white tongue so guessing that's the oral thrush kicking in. 

I really can't wait until this is all over - I hate getting this poison put in me and having my life on hold. 

Big hugs to everyone - I see from recent posts that a lot of you are dealing with an awful lot on top of this rotten chemo and my heart goes out to you all xox

 

WMJ
Member

Re: December 2016 Starters

Morning ladies!

 

So sorry too hear about the problems you have been having Argarside....Those dam periods are a nightmare. Can't they give you something to stop them, I realise it is more drugs, but passing out etc is just awful. Going through this is bad enough without the added issue of periods. Hope things improve for you soon.

 

Tor sorry to hear you are feeling so low at the moment. I am with you there about feeling as though in hibernation, I see very few people and furthermore avoid them as don't want the pity, sympathy etc. This time of year so many people have colds etc. I still managed to pick up a virus even though in partial hibernation, thankfully it didn't prevent my treatment going ahead.  Strangely enough I was chatting to my OH and our son yesterday about going to 'normal' places once the chemo is done. I was saying I don't want people seeing the effects of chemo before me, I don't really think they got what I meant and wanted to reassure me as best they can. I do have a wig but not wearing it at the moment. IF I go out I just wear a hat, much easier in the winter to do that.  Not so easy to do that in a restaurant in April though. 

 

Jacquie48, hope you had a good night and are improving further.

 

LennyGK, no news from you for sometime, hoping you are doing okay.

 

XX

 

Running girl 53
Member

Re: December 2016 Starters

Argaside, sorry to hear its been tough for you again. Hope today is better for you. X
Rooner999
Member

Re: December 2016 Starters

Hi Tor. I find the PICC line pretty easy to live with; you forget its there to be fair. My other half cleans it every week and is pretty straightforward once you've been shown.
fiddlercrab
Member

Re: December 2016 Starters

T day 5 and not aching as much as yesterday, so far at least! Definitely not as bad as FEC so far! I have fluffy fuzz on my head but my eyebrows are definitely thinning more.

 

Tor - I am having Herceptin but not Perjeta. I asked the oncologist about Perjeta and he was rather vague because it hadn't been discussed and approved at the MDT, he didn't know if he could add it in. It didn't appear so I am assuming for some reason I won't get it... something to quiz him about at my next appointment I think. At least I get it as an injection though, they are struggling with my veins now.

Tor
Member

Re: December 2016 Starters

Hi everyone - I've had the first of 3 T's following 3 Fec's, and have also started Herceptin and Perjeta which will last one year.  I'm having a picc line put in just before my next dose because my arms are black and blue and painful, and I hadn't realised that the double dose has to be intravenous - can't deal with that for a whole year!  Anyone else doing the same?  My concern is the weekly flush that is needed, which sounds like a real bind - I don't know if it can be done at home by a partner? Also I'm desperate to get back to some sort of normality and want to travel, not be tied to home.  I've still got to face mastectomy and rads, but hope to reclaim my life by June.  I'm dealing with the side effects of T ok - not nearly as bad as the Fec, except tired and a bit achey, but anything is better than nausea and dizziness.  Silly things like a very dry nose (vaseline helps a bit, sore throat and black nails, and eyebrows and lashes disappearing fast, which I'm finding very hard to deal with as I look like Gollum on a good day, and still find having to wear a wig difficult and feel very self-concious, even though everyone says it looks lovely.  Best boost so far was from a young lad (16) who said to me "at least you haven't lost your hair!"  Bless him, I nearly cried. And my 3 year old grand daughter still calls me Curly Nanny and tells me to take off my hair (my wig is straight). I feel like I'm in hibernation, with everyone keeping their distance for fear of me catching anything, and when I go out I may as well carry a flag declaring Chemo Patient, to excuse my looks and grumpiness if anyone coughs near me! 

Best wishes to everyone out there.......!

Agarside
Member

Re: December 2016 Starters

Hi All
Just coming out of the fog if FEC 3...
Fasting worked properly this time, although nauseous and very dizzy... didnt actually throw up.

Again tripped by my period!! Started 4am this morning. This time I had the drugs ready, but one needed to be taken with food...so I thought I would pop downstairs and make a piece of toast...
I put toast in toaster only to find the room started spinning so I made my way to the sofa...where I woke up cold and sweaty some 10 mins later...
Thinking I had fell asleep..i got up got my toast, ate it took drugs and went to sleep. DH went a bit mad with me...eek ..then realising I must have passed out... rang the oncology help line...
Because of what happened last time with such a heavy period, we now have a plan in place... but my worry is my Hb is still going down..137 and for this cycle 118. I would consider dex if there was any evidence it helps with RBC but it is only WCC - which is why we are told to take higher doses on T as it is high risk of neutrophenic sepsis...
So DH despatched for spatone...I use a lot in my midwifery, normal otc iron just not working...

This time yesterday I had had enough, I didnt want to do this again...my body is beginnig to feel it but I am thankful I can sleep!!

I am interesting in all the different oncologist views we can see on this thread. I have to put together a reasearch sheet together proving Tamoxifen reduces BMD in pre menopausal women...wtf...surely they should have the answers??? I am going to ask about ovary removal though and keen to hear others responses who have asked.. when vert er+
Anyways much love to you all!!
Nite nite
A
Xx

Running girl 53
Member

Re: December 2016 Starters

Hi Jacqui48
Sorry to hear you are still in hospital wishing you a speedy recovery and return home. Sending you big hugs.
Cookiepuss i did a pamper yourself pink session at my hospital organised by breast nurses and boots chemist from our local boots store. Very good. I have been looking on internet for videos regarding make up and i found one i really like and have actually tried it today after purchasing a couple of things like liquid liner, thinner eye makeup brush, new mascara and eyebrow pencil. Here is tge You tube link
https://youtu.be/eMA0T5i5C5c
She's actually easy to listen to. I did find a few that were a bit yampy! Anyway have a look. She was just about to have her final chemo so she had few eyelashes and thinning eyebrows.
Rooner glad you are doing well and enjoyed your sons birthday.
I'm not doing too bad. Bit tired but food tasting ok and did first injection tonight. No bone pain yet but i expect it may be cumulative. Funny how advise is different. I was told i may get constipated with t and advised to take senokot daily. So far they are right as havn't been since yesterday morning.
Hope everyone else doing ok. Enjoy your weekends. Xxx
JoJo45
Member

Re: December 2016 Starters

Ladies, so good to see the support on this thread.  

Side effects on the T are slightly different to those on FEC, nausea is much less.  Just watch out for the bone pains and tell the ontology team of anything you are not sure about, I've found my team very supportive.  Unfortunately my side effects were severe on the first T so they reduced the dose for the second round, much better this time 🙂, I had nosebleeds a lot on the first which left my haemaglobin levels a bit low.  

 

Nail varnish,  💅🏻  I've used so many over the years!  Currently I'm using coconut infusions by Barry M, they claim to nourish the nail and don't need a base coat.  They certainly seem to be working.  I find if I apply in the evening and sit watching TV or on iPad I don't smudge them 😆😆 the last ones lasted a week before chipping.  Just redone today.  

I've just booked on a LGFG course at our local cancer charity but I couldn't get one until March, I'll be finished chemo by then but still worth doing.  

 

Hugs to all 🤗🤗🤗

 

Xxx 

 

ps my hair is growing back, definitely stubble coming through 😀 However eyebrows and lashes have nearly gone 😕

 

 

Evie-S
Community Champion

Re: December 2016 Starters

Hi Rooner - so glad to hear you are feeling good and can enjoy your son's birthday -  a very happy birthday to him. Thanks for the varnish and Look good feel better advice. Am def going to look into it now. xx