62319members
328054posts
cancel
Showing results for 
Search instead for 
Did you mean: 

September 2016 starters

Member

Re: September 2016 starters

Hi Everyone,

 

Dawn - so glad the surgery wasn't as bad as you expected and hope you continue to feel well and that the surgery results are good.

 

Like you Auntienanna I start radiotherapy on 1st February and have had all my measurements and tatoos done.

 

Lisad - I also have a prescription for Letrozole from the oncologist who suggested I start Letrozole when I start the radiotherapy. I also went through the specific benefits of the radiotherapy and hormone treatment with her in terms of outcomes and the Predict system suggested 7% for each which is a definite bonus as I was high risk on the Oncotype test. Not looking forward to the long term use of Letrozole - I'd like to have delayed the start even longer to give my hair a head start so to speak. 

 

See-see - I thought my nails had survived chemo as I've oiled them religiously but in the last few days have become very sensitive and I can track the chemo effects on the growing nail - a bit like tree trunks exposed to adverse environment! 

 

R

Member

Re: September 2016 starters

I'm in the North East, near Middlesbrough.
Member

Re: September 2016 starters

I'm in the north west near Warrington. Perhaps Birmingham?
Member

Re: September 2016 starters

Hi See See - good idea about posting on this thread through our rad tretament and thereafter.

 

I do not know where you are all from, I live in Kent near the Dartford tunnel and near Bluewater shopping centre and I was thinking it would nice to meet up with everyone perhaps September time when hopefully we all have received our all clear.Woman Very Happy

 

Anyway perhps ladies give it some thought and perhaps we can all meet up in one central location to suit everyone.

 

xx  

Member

Re: September 2016 starters

His Lisa,
I start radiotherapy on Wednesday a day was told to start the anastrazole at the same time. Hopefully that has aowed me to start feeling better each day, tho like you still tired a day my.nails are falling off. It would.be good if we could.keep this thread up to the end of treatment as I feel I've got to know people. The other radiotherapy thread which would be relevant, posts pretty constantly and I can't keep up!
Member

Re: September 2016 starters

I start my rads on 1st Feb, I have already been measured for my machine and had the markers tattooed on - they look just like freckles if anybody is concerned.

 

I have an outpatients form to take to my GP so he can prescribe Tamoxifen. My chemo nurse said I could just hand it in at reception but she would prefer me to make an appointment with him so he can discuss potential side effects etc. So I am now attempting to get an appointment with my preferred GP.

 

Chemo nurse said there was no real hurry but obviously don't leave it too long before starting them.

 

I'm not looking forward to SE's either....

Member

Re: September 2016 starters

Hi Ladies

 

Hope your all doing well.  Finally felt like my old self last week, still get tired but hopefully everything is back on track.

 

Start Rads on the the 15th February until the 7th March. 

 

Has anyone started their drug treatment, my radialogist could not wait to rush me a prescription for LetrozoleWoman Surprised  http://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/hormonaltherapies/indiv...

 

I not looking forward to the hot flushes  (left them behind 12 years ago Woman LOL)  and muscle and joint pain having gone through two hip replacements and op on my back!

 

Will be interesting  what side effects we will have for those of you taking this drug.

 

Take care everyone

 

xx

Member

Re: September 2016 starters

Well done Dawn - another step forwardsSmiley Happy

Rest and double rest and you will feel much better in a few days

You are lucky to get home so quickly - I was in for a 5 days sleepover!

 

My wig got the approval from OH and daughter

Now I am wearing it around the house for a while each day and looking in every mirror

I will pluck up the courage to wear it in public soon

Not as cosy and warm as the hats though

 

A

Member

Re: September 2016 starters

I'm glad you're so well, Dawn. The red stuff is iodine, to prevent infection, they do like to splash it around!! Take care and rest lots. I prescribe sleeps in for the next few days at least Woman Very Happy

Member

Re: September 2016 starters

Thanks for all your good wishes SeeSee, Auntienanna and Aine!

 

I'm now back home (was discharged in the afternoon following surgery) and it has been nowhere near as bad as I feared. Apart from some pain and soreness from the wound and general tiredness, which is only to be expected, I have been fine. I have been given a follow up appointment with the surgeon on 3 February by which time the biopsy results should be available - fingers crossed no need for more surgery.

 

Meanwhile, I have been advised to take things easy for the next 24 hours until the anaesthetic is completely out of my system, and to start doing arm exercises from today until further notice, but not do anything too strenuous, no heavy lifting or vacuuming (fortunately OH does that so I don't need to!). Also advised to take Paracetamol and/ or Ibuprofen to control the pain (was offered Cocodamol but declined).

 

The wound can't be all that big because it isn't a huge dressing (it was WLE and SNB only and no axillary nodes were taken). It is a waterproof dressing so I can also use the shower as long as I try and avoid getting the dressing too wet. I am to keep it on for 10 days if possible, and to watch out for infections - I am slapping on the Dermol as a precaution! They gave me a number to ring if any problems.

 

By far the worst things yesterday were the preliminaries - hanging around in the 'Arrivals Lounge' waiting to see various nurses, the anaesthetist and the surgeon, and traipsing around the hospital after that to have the injection for tracing the sentinel nodes, and to have the guide wire put in. The guide wire installation was a right pain and took ages, because the clip was difficult to see on the ultrasound and mammogram once they had put in the local anaesthetic. The nurse had to get the consultant in to help. They were running a bit late anyway because they had to fit an extra patient in, so I must have been quite late getting to the theatre after all the messing about with the guide wire.

 

I'm glad I saw the anaesthetist first though, because he was able to reassure me that the anaesthetic doesn't work the same way as chemo, and that bad effects were very unlikely given the short time I would be under (about three quarters of an hour). The surgeon must have worked really quickly, so it looks like all the palaver with the guide wire was worth it.

 

When I came round and they established I was OK, I was given some water (very welcome after being 'nil by mouth' since 3.00 am), and I was moved onto a ward to recover. There the nurses brought me tea, biscuits and sandwiches, and did observations at regular intervals until they were satisfied I was fit to go home. Then the nurse telephoned OH to come and get me.

 

I got home about 5.30 in the afternoon and I was eating my tea before Auntienanna posted - in a chair at the table, not in bed! Had to have a good wash first though, to try and get rid of the red stuff they had plastered all over me during the operation (what on earth is it?). Then watched the telly for a bit before going to bed and managed not to fall asleep in front of Death in Paradise (just the sort of mindless stuff I needed, rubbish plots but nice scenery!).

 

Got up late this morning at 11.00 - but if you can't have a lie in after an operation when can you?

Member

Re: September 2016 starters

Good luck Dawn - I had no nausea after the anaesthetic and I am the Queen of NauseaSmiley Happy

Hope all goes well after.

See See - hope the SE's are getting better and good luck with the rads - another milestone passed!

 

I must say on day 18 I am feeling better every day and getting a bit more energy.  It still feels very strange not to be feeling sick and looking inwards all day.  I got my wig today and am fairly happy with it.  The hubby and daughter havent seen it yet - they are the judges so fingers crossed!

 

One day at a time

A

Member

Re: September 2016 starters

Good luck Dawn, although by this time hopefully you'll be sitting up in bed eating a tasty tea. I had a lumpectomy and was discharged the same day and insisted on calling in the chippy on the way home as they kicked me out just as the smell of tea was wafting through the ward and I was ravenous Woman LOL I had no nausea, no real fatigue, beyond the usual tiredness that one expects following surgery, and I had no real pain either, mainly discomfort. I'm allergic to morphine and codeine so you can imagine that pain relief was a concern of mine.

Member

Re: September 2016 starters

Good luck Dawn. I had much bigger surgery and didn't feel sick at all - just disabled because of two wounds. Hope it all goes ok, you get no infections and are out and about again as quickly as possible. Big hugs xx

Member

Re: September 2016 starters

Glad you are both feeling better Aine and SeeSee, now you're halfway through the last T cycle. I am pleased to report that nothing serious was found in the sigmoidoscopy I had yesterday afternoon (just a few small piles - sorry, too much information!). I have now been discharged from the Endoscopy department of the hospital, as the surgeon is satisfied that the bleeding during the T cycles was caused by the chemotherapy. This is a huge relief, and means I can now focus on the rest of the BC treatment plan. I spent most of the rest of yesterday tackling the cleaning and ironing backlog, as today I will be going to the theatre in a revealing gown (it's lumpectomy day!), and I don't know when I will be capable of doing these things again. I'm posting ridiculously early this morning because I have to be at the hospital by 7.00 a.m. (we're on our way there). Fortunately, it only takes us about half an hour to get there so it could be worse. I've noticed some posts on another thread from others who have suffered fatigue and nausea after a lumpectomy because of the anaesthetic. I'm only just starting to get over the fatigue from the chemotherapy, and it looks like the operation will set me back again (so will the radiotherapy). I'm also worried about nausea, because of the bad experience I had with FEC. I hope they can give me an anaesthetic that doesn't cause nausea, because I'd rather not have to rely on anti-sickness medication that either doesn't work, or combined with the lingering effects of the chemo and the other effects of the anaesthetic, will send me to sleep for the rest of the year (i.e. Cyclizine). Wish me luck - I'll let you know how I get on when I am able to post again.

Member

Re: September 2016 starters

Hi Aine,

 

I'm on day 15 of my last dose after my cycles being 7 days long. I'm still feeling 'fluey' and have aches and pains and struggle going upstairs. However I'm improving each day and had my celebratory whiskey for the end of chemo today.  I don't think I'd be up to a class yet but I had a walk to the pharmacy and back with the dog today without feeling crappy for the first time. Hopefully they will agree to take my PICC line out on Friday. 

 

I start radiotherapy next next week so I'm gonna wait to see what effect that has before trying to get back to normal again as I don't want to take steps forward and then back. I went to an 'arm class' yesterday which was about the physio to do during rads and what the likely effects will be so I'm being rather cautious about celebrating. 

 

Hope everyone is improving 

 

Cathy x

Member

Re: September 2016 starters

Hi Dawn

I get my wig tomorrow fingers crossed.  The trial one was too dark so I have ordered another one.

I cant wait to see it.  It will mean I can go out in the evening for the first time in 5 months!!!

 

Last cycle day 16 - am feeling much better every day.

Today I actually went to a yoga class and mindfulness class in our local MacMillan Centre - very enjoyable and the chat after to other ladies is great therapy - try it out for yourselves ladies!

 

Has anyone else still got SE's?

I have very tender nails, runny nose, streaming eyes and everything is tasting worse (cardboard for dinner every nightSmiley Very Happy)

 

One day at a time sweet ladiesSmiley Very Happy

A

Member

Re: September 2016 starters

How have you been getting on with the wig Aine? I thought it was funny that your wig is too shiny, because I have had the opposite problem! The first time I washed mine it seemed dull and lifeless. So I ordered some detangling conditioning cream, and used that next time after shampooing it. Result: wig much improved, softer, shinier (but not too shiny!), more natural looking, and easier to comb. I now use the conditioner every time. If it gets too shiny I can always give the conditioner a miss next time, or use less of it. My top tips for wig care: don't wash it too often (my hairdresser said about every 3 weeks is enough if you are not wearing it every day), follow the washing instructions that came with it, don't rub it dry but pat dry with a towel and then allow it to finish drying naturally (I hang mine in the shower!), don't comb it until it is completely dry, and once it is, use a detangling comb, but be very careful not to damage the cap. Hope your wig is looking better now and you feel happier wearing it.
Member

Re: September 2016 starters

Many thanks for the tips for shiny wigs ladies!

This website is invaluableSmiley Happy

Blueash you are a mine if information Smiley Very Happy

 

I will try your tips out tomorrow

 

(Cycle 6 T day 13 = the nausea has finally decided to leave me today - same day on all T cycles if it helps anyone -  I am starting to relax today.  Still have to rest if I do any physical work but ....tunnel....light...

 

Carpe diem

A

Member

Re: September 2016 starters

My wig supplier told me to use dry shampoo on shiny wigs. Very easy to use!

Jo xx
Community Champion

Re: September 2016 starters

Aine about your too bright wig, shake some baby powder or talc all over it. That should do the trick, I cannot claim that as my knowledge/expertise - I watched a video on you tube about wig and hair extensions care. I don't need a wig but I do use toppers (wide  clip in hair extensions) if I go anywhere nice.

Member

Re: September 2016 starters

I'm just starting to feel better after my final round of chemo. It seemed to have hit me harder than previously, although I think some of that is my subconscious expecting me to feel better straight away! I shall go and look at the hair regrowth link, I'm rather fed up of looking like Humpty Dumpty and I have to confess to buying a lash growth serum. My lashes were my one vanity, being long, black and curling upwards and although I still have lashes they are short and thin and I want my old ones back!

Aine, I'm sorry you have been feeling so down. I agree, most folk are too busy to notice but if you feel self conscious then following the good advice on here is a must. I am naturally lazy but I have to admit to feeling better if I get out for a bit each day, even if its a walk to the shop for milk.

Dawn, I love the badge! I will have to get one to go with the toy blue tit my sister bought me from our RSPB reserve (It's a joke that I am now Mrs Blue Tit as I still have the dye on my skin from my surgery in August, lol) Good luck with your surgery on Thursday, the pre assessment is just weight, bp, an ECG and a discussion so nothing to worry about.
Member

Re: September 2016 starters

Thanks Olddawn for your supportive comments.  I love that badgeSmiley Very Happy

Good luck for Monday and for your op on Thursday.  We will be thinking about you.

 

Everyone should look at the Blueash link to the website about hair re-growth.  It is very informative.

 

I am starting to feel that the SE's are settling down and the nausea is lowering again so looking forward to next week and feeling better.

I am a former fitness teacher so I am really convinced of the power of daily exercise in keeping you well both mentally and physically.

I take the dog out almost every day for a short walk and some days I stagger and some days I can get a good pace going. The dog is in heat so you can imagine how ridiculous we lookSmiley LOL

 

Like you Olddawn the wind outside keeps me awake (would not sleep anyway) and the wind in my stomach keeps me awake too!!  I could go to Australia tomorrow and not suffer jetlag - I'm awake all night and want to sleep all day -  normal so I'm told.

 

My local MacMillan centre does yoga followed by mindfullness classes and they might help with my sleep.  The last time I did an evening yoga session I had the best night's sleep ever.

 

One day at a time ladies!

 

 

Member

Re: September 2016 starters

Hi everyone! I know I haven't posted for a while as my chemo is now finished, but I have been looking in from time to time to see how everyone else on this thread is getting on.

 

Congratulations to Auntienanna, SeeSee, Lisad and Aine on reaching your final cycle at last (at times we all thought we'd never get there!), and hope the worst of the SEs will soon be over.

 

I'm afraid the fatigue will probably be plaguing us all for a long time after the last cycle ends, from what Sue H-S and others have said. I remember Madmac22 saying at the end of her chemo that she felt a bit deflated, and that it was something of an anti-climax because of it, and I now know what she meant! I am still sleeping a lot, although I was kept awake last night by howling wind (outside I hasten to add!). It's doing it again now, but hopefully I will sleep better tonight because I am tired!

 

I also can't seem to motivate myself to get out and have a walk every day as I used to, even though I know it will do me good and help to fight the fatigue. I don't think the fatigue is entirely to blame for this though - I've just got too used to staying in and vegetating over Christmas!

 

Aine - I can understand your reluctance to go out at the moment, but I hope you manage to overcome it and feel more comfortable about being seen in your wig. Provided it fits well and suits you, nobody will notice - they are too busy wrapped up in what they are doing themselves to be looking for people wearing wigs! I responded to your post about hair regrowth on the October thread (03.01.17), and - for others' benefit - Blueash also posted a link to a website with information on the likely timescale for hair regrowth. I hope you will soon start to see the signs of new growth (though hopefully not 'green shoots' lol!) - look out for a 'five o' clock shadow' on your head, which is the first sign that the hairs are starting to come through. It is now a month since my last chemo infusion, and my head hair has started to re-grow (so have some of the missing eyebrows), although it is still sparse, patchy and uneven in length. Early days.

 

And if you're worried about people staring at your boobs, you can always get one of these (I certainly intend to for when I go back to work, as the lumpectomy and radiotherapy are likely to leave me with odd ones): http://www.notonthehighstreet.com/aliceshieldsceramics/product/earthenware-stop-looking-at-my-tits-b...

 

Whenever I venture out, I am usually shattered by the time I get home, and it's that which gets me down rather than what I look like. I am probably being too ambitious, when I should be doing a short walk every day instead to build myself up and get back into the habit of regular gentle exercise. I'm a bit worried about my lack of fitness, because my operation is next Thursday (and pre-op assessment is on Monday!), so I really must make a bit more effort in the short time left. I'll let you know how it goes, once I am in a fit condition to post.

 

Meanwhile, best wishes to anyone still battling the SEs - and goodnight ladies!

Member

Re: September 2016 starters

SeeSee and Lisad

Many thanks for your words of support

Im still trying to recover from T6 and the SE's so not feeling like its over just yet

However I have taken what you say on board and am thinking about it all

Aine XX

Member

Re: September 2016 starters

 

Hi Ladies,

 

Had my final chemo last Wednesday and it has really wiped me out! Thank God I do not have to go through this again.Woman Sad Feeling very emotional stillWoman Sad

 

Since I lost my hair in September I have gone out in my hats and scarves and not bothered what people think. Interesting going around shopping malls, just out and about I have never come across anyone else wearing a head scarf! I feel that I am the only person around in my area that is coping with having cancer and the treatment that in entails.

 

I have an apt with my Radiologist next week to start my treatment plan - 15 sessions but hope that that will not start until 6th Feb as have my granddaughters first birthday and Christening on the 5th and want to be the best I can be without feeling tired again from the radiation.

 

Like Cathy, I have experienced this mixed reactions and support and often those closest give the least support!Woman Sad

 

My friend of 45 years has been my biggest support, attending 4 out of the 6 chemo sessions and never had to ask her if she would come along, she was just there!Woman Happy

 

Once I have had radiation treatment I already know that I will have to have another reconstruction as the radiation hardens the saline, and I also need to have some lipo suction filling done as I have some hollow areas in my breast issue.

 

I am too quite pale whereas before I had a good colour and have dark shadowing around my eyes which at 62 have ever experienced before - I know I can use concealer but just another sign of what has taken place to your body.

 

I need to lose weight so thinking of doing the Lighter life plan but not sure whether to start now or wait until I am a lot better health wise and once radiation treatment has finished?

 

I feel I need a plan for 2017 - not sure what it is but I know I need something for just me. I feel just because you out on a brave face and have tolerated the chemo treatment quiet well that everyone thinks that your fine and great but instead I feel like screaming.Woman Sad

 

Sorry for the ramble - must still be the effects of last week’s chemo!

 

Lisa x

Member

Re: September 2016 starters

Hi Aine,

 

I really feel for you. I had my last chemo on fourth Jan and start radiotherapy on twenty fifth of Jan till twenty eighth February. 

 

Losing my long, thick, luscious hair was a real wrench for me.

 

I attended counselling after finding it hard to cope emotionally with chemo. One of the results was that I went from using the cold cap to getting my hair shaved off by my husband. By then I had bald patches despite the cold cap. The reason I made this decision was that my counsellor pointed out that after going through this experience I will be a different person - e.g. I don't get so worked up over little things and I have a different perspective on life, having been forced to take one day at a time.

 

Also, I won't look quite the same after cancer - in my case I now have a flat stomach, at present I'm even paler than I used to be and I have no hair for now. I have come to accept that I look different. I don't have a choice really.

 

If other people don't like what they see, my view is that quite frankly that's their problem. I make an effort by wearing my wig and make up when children are around as I don't want to worry or upset them, but my view is that adults who are in my life need to cope with how I look now and the fact that I've changed. I think people who stare are rude in the extreme but to be honest I haven't experienced this, though my reconstruction is so far quite good. It may shrink during radiotherapy, but I'll talk to the plastic surgeon about that.

 

Unlike you I have told quite a few people about my diagnosis as I felt I needed support. Some were fab, others found it harder to cope with, but I did get the support  I needed, often from the most unexpected of places.

 

I joined a choir attached to the centre where I have chemo. All the ladies have, or have had cancer and I've found that to be a real support. I'm also going to do the Moving On course soon which comes highly recommended and which it sounds like you might benefit from.

 

I hope this post is some help. If not, take no notice of it.

 

Best wishes and hugs. I hope you find what you need to move forward and get your confidence back.

 

Cathy

Member

Re: September 2016 starters

Hi all!!

Day 5 of last T.  Very rough few days but starting to come round now.  Codeine is a great pain reliever but does cause constipation.  Usual SE's.  Even typing is uncomfortable!

I am not having Radiotherapy.  The chemo was a 'preventative' therapy in case there were any stray cells.

 

The october thread made some good points about how I feel.  I am so reluctant to appear out in public at all.  Im still waiting for my new wig in the correct shade so am wearing bobble hats out.  I have spend months avoiding neighbours and people that would ask me why I'm not at work.  I have never had to explain myself to anyone yet - I am not having my health discussed as hot gossip locally.

 

I still don't know how I am going to adjust back to being seen out and what I am going to say to people.  I would love no one to ever find out and my life to just go back to 'normal'.  I think that by September when I go back to teaching that I will be able to talk about it but that's when I have hair again and no one can stare at me.

 

Does anyone else feel this way?   I am soo self-conscious about being bald.  And about people staring at my boobs if they realise it was bc I had.  I have told only family and a couple of best mates.

 

Big hugs to all of you like me on the final cycle.  It still hasn't sunk in yet.  Think its the January blues getting in the way. 

Girls we made it....to all of you still on the journey it isn't much comfort but take one day at a time and you will be in a better place soonSmiley Happy

A

Member

Re: September 2016 starters

I'm having 5 weeks of rads. It's spread out as I've already had reconstruction and the surgeon prefers this timescale, presumably as she thinks it will cause Less damage. Got my planning meeting tomorrow after chemo!

Member

Re: September 2016 starters

Hi Joanne, I have my last chemo tomorrow and start radiotherapy on 1st Feb. I'm having 3 weeks of regular rads and an extra week where they target the tumour bed.
Member

Re: September 2016 starters

Hi See See and Aine, 

 

Well you're both on the home stretch now, hope it all goes well and not too many SEs.

Thanks for the news on the picc, so it looks like it will be there a bit longer.

Are any of you going on to have radio after as I will be after my chemo? (apparently three weeks worth with weekends off)

Hugs Joanne xx

Member

Re: September 2016 starters

Update on PICC line removal: when I went for bloods and PICC care this morning I was told that it would need to stay in for at least two weeks after my last treatment 'in case you get poorly'. In other words I presume in case I need IV antibiotics again or a blood transfusion becomes necessary. 😟

Member

Re: September 2016 starters

7oanne

I was told I would get my PICC line out on Tuesday (last chemo) and the nurses would do it.  It does not hurt and I won't feel a thing.

 

Does anyone know how soon your hair starts to grow back?  I am dying for it to start.  I can't even look at my boiled egg head in the mirror.

 

I got my new wig last week and it is really good.  I went for the lightest weave so you can see a bit of scalp at the parting (there are 3 thicknesses I am told) and the hairline at my forehead is light as well.  I have to pay £200 for it because I ordered a second one (first one was toooo bright) and I am entitled to another free one 6 months from the first one.  Just for everyone's info in case you also don't like yours.

 

A

Member

Re: September 2016 starters

Hi 7oanne,

If they take my PICC out at my last chemo on Wednesday I'll let you know (I hope they do so I can take the blasted dressing off).

 

However I do know it doesn't hurt cos I've had mine taken out of one arm and put in the other. One of the nurses on the chemo unit did it and just needed a plaster for a very brief time. Didn't feel a thing xx

Member

Re: September 2016 starters

Hi everyone

 

So happy for you all ( if slightly envious ) that you are on your last chemo 🍾🎉🎉🍾😘. (I've still got 2 Ts to go)

Well done 😊🍾😊🍾😊🍾

 

Dose anyone know how soon after the last chemo treatment that they take the picc line out and what it involves (i.e. Who does it and is it under anaesthetic - does it hurt?)

 

HAPPY NEW YEAR to everyone and wishing us all a healthy and happy 2017 and onwards😘😘💕

Big hugs Jo xxx

Member

Re: September 2016 starters

It looks like most of us have either finished now or are about to, so the end is in sight...so Happy New Year everyone! 🍷🍸🍻🎈🎉🎊 Like Lisad I hope 2017 is a better year for all of us. 

Member

Re: September 2016 starters

Lisad aren't you just back from a lovely holiday?

 

To all of you due last chemo next week ...Auntienanna, Lisad, etc...yes we thought it would never get to this stage didn't we!!!!!   I hated people saying to me in September sure it will be over in no time!!!

 

Enjoy New Year's Eve everyone and kick 2016 goodbye.  2017 will be great....let's promise ourselves thatSmiley Happy

 

It will be so strange to say goodbye to all the hospital staff next Tuesday won't it?  They are fantastic.  I can't wait to get the PICC line out.

 

Every day of the next nausea session will be the last one of the cycle. Yippee!!  I am going to drink Prosecco if I can stomach it!!!

 

Be positive Smiley Happy   A

 

 

Member

Re: September 2016 starters

Happy New Year ladies lets hope for all us 2017 is a lot better than 2016!

 

I to have my last chem session on Wednesday.  Still awaiting apt for my radiation treatment and assessment.

 

I read to use R1 & R2 radiation cream which you can get free on prescription.

 

Will hopefully catch up with you all here or one another thread.

 

Take Care Heart- There is light at the end of tunnel Woman LOL

 

Lisa x

Member

Re: September 2016 starters

Aine, I have my last chemo next Wednesday and while I'm not exactly looking forward to it I'm not dreading it as much as usual. I know a couple of months ago it seemed as if I would never see light at the end of the tunnel.

Here's hoping rads are as easy to get through as most people find them.
Member

Re: September 2016 starters

Sorry 7oanne forgot to say...

first T cycle I had the trots for 4 days from day 10 on.

Was expecting same on cycle two.....never happened - I was fine...so you might be the sameSmiley Happy

A

Member

Re: September 2016 starters

Hi all!

Hi 7oanne

Just to add my info about the second T cyle.

 

Am glad to say it was no worse than the first.  The aches from day 4 to 7 were no worse and didnt last as many days.  They gave me codeine to take and it was fantastic.  I took 2 on the worst day and I felt a warm glow for hours and no pain!  I took only 1 at a time the next day (total 2) during the day and it got me through.  I took no more cos was afraid of constipation - never became a problem.

 

I had the usual bad nausea for 14 days then it lifted and I have had a great few days. Same as last time.

When you get a couple of 'normal' days it gives you such an emotional boost doesn't it???

 

Numb tongue a bit of a nuisance and had numb lips for 2 days too unlike last time.

 

Fingers are very sensitive to heat since the start of first T.  I find it very hard to shower, cook and wash up.

This has not eased off and I am going to speak to them about it next Tuesday.....my last T and last chemo.

 

Fatigue was no worse either.  When you know what to expect then it is easier to cope I feel.

 

I was terrified of the T cycles and they turned out to be no worse and much easier to endure than the FEC.

 

I am not worried about next Tuesday...I never thought I would be able to say those two words LAST CHEMO!!!!!

To all you who are about to do the same ...GO US!!!!!

 

Aine

 

 

 

 

 

Member

Re: September 2016 starters

Jo - can't claim to have invented 'Tax Trots' nickname. It is a term used by other ladies on earlier monthly threads, so I don't know who first invented it. Having experienced it though, I thought it was a good way of describing the effects! I never had it immediately after the infusion, it waited a few days before making its presence felt.  I did have a close shave once while out shopping, only just got to the loo in Sainsbury's in time!

Member

Re: September 2016 starters

Hi OldDawn 63

 

Thanks for the advice,🎉Well done for getting through chemo🎉 (I Soooo wish I was at that point).

 

Day 12 and have only just stopped having the (I like your nickname ) 'Taxs Trots' and things in that department are still not back to normal.  I just hope that this Side effect waits until I'm home (nothing like your own bathroom) and not the chemo lounge with infusion 2 😬.

 

wishing you all the best with the next step in your treatment (you've got through chemo 😃🍾) lots of love Jo xx

Member

Re: September 2016 starters

Hi Truey,see see,rosiero

 

Thanks for the advice I was beginning to get myself into a bit of a state.

I went for my picc line flush today and bumped in to the oncologist and explained what had happened re SEs (as I didn't have an appointment booked with oncology until just before my last T) and he tapped up my notes on the pc and said for the next T he would reduces the levels slightly (I asked if that would affect the effectiveness of the drug and he said no) still feel nervous but (sore) fingers crossed it will be ok 😬

 

So sorry see see to hear about your much loved dog, I have an elderly Labrador so I know how much apart of the family they are. 💕💕💕

 

Sending you all a big thank you (and see see a big hug)😘

 

Member

Re: September 2016 starters

7oanne - I've had all three of my T (today is Day 17 of the final cycle), and each one has been slightly different, although they all followed a similar pattern. I don't think it is possible to know whether your second T will be worse than your first, as everyone is different. I would say that on balance my T cycles got progressively a bit worse each time, and this last one has definitely been worse than the previous two in terms of fatigue, neuropathy, mouth/ throat problems and skin problems, but this is probably because of the cumulative effects. However, some SEs have not been as bad this time, in particular the cough, the 'Tax Trots' and the bleeding when going to the loo has not been anything like as bad as on the previous two cycles. At least I didn't end up in hospital at any time after having T, which I did after two out of the three FEC infusions! All you can do is prepare for the worst as best you can Having had one, you will know roughly what to expect next time, although like me you may find the SEs kick in a bit earlier and last a bit longer. Sorry I can't offer any better advice, and hope your next T is not as bad as you fear. Sending you best wishes. 💙💚💛

Member

Re: September 2016 starters

Hi Bluash - thanks for your good wishes and advice on operation and radiotherapy and sorry for late reply to your post of 25 December. Hope you had a good Christmas. Ours was quiet but at least I managed to cook and eat the Christmas lunch!

Member

Re: September 2016 starters

Had my penultimate chemo today with the last one scheduled for fourth January 💉🤕😗😦😀

 

Got through Christmas ok but didn't quite realise how tiring having visitors is! Also we had to put one of our two dogs to sleep on 23rd Dec. She was my first pet so that didn't help. 😢😪🐶🌈

 

I found out today that I'm having 3 weeks off after chemo and then 5 weeks of rads (spreading the dose as I've already had my reconstruction). I'm also starting zoledronate injections on Friday to protect my bones as I'm post menopause because of a hysterectomy some years ago and to stop the cancer spreading to the bones. I will be starting hormone therapy when rads start as my cancer was very heavily oestrogen receptive. 

 

SO LADIES AND GENTS, LIGHT IS VISIBLE AT THE END OF THE TUNNEL. 😃🚴‍♀️🥁💉😃🎉🍷😎

I hope you all get to see the light of the end of the chemo train / tunnel soon. Surgery was easy compared to this and everyone tells me rads are much easier than chemo. The hormone therapy may be a challenge but I'm hoping that a return to work will be on the horizon soon and that will take my mind off things.

 

I'm also planning to do the HOPE course run by MacMillan which comes highly recommended. It's a weekly course for six weeks (two and a half hours a week). It's group based and helps you refocus once treatment is ending. 

 

Sorry this his was a long post - it's the energy from steroids .....

 

Cathy

 

Member

Re: September 2016 starters

Hi Jo,

I had some very similar problems on my first T cycle. I found it difficult to keep my temperature down and on day 5 ended up in A&E and had IV antibiotics - luckily my blood tests came out normal and my temp reduced so I wasn't admitted. I also had really bad bone and muscle pain, particularly in my back which paracetamol didn't touch and had a couple of days in bed. I also had an itchy skin rash on my neck but got prescribed some cream and have been successfully using it to keep problems at bay. 

 

However T2 was very different. My oncologist suggested taking pain killers a couple of hours before the first injection and that some people had found it best to do the injection just before going to bed instead of early evening as I had been doing. He also prescribed codeine but I only took a couple as it makes me so constipated even with the fabulously named laxative Laxido! My main problem was feeling very very tired and having horrible tastebuds. So this last T I plan to just take paracetamol in advance of the injections and wear light clothing to keep cooler.  I have much longer morning and evening routines making sure my skin is well hydrated and using lots of really good nail oil and hand cream and of course mouthwash which has kept ulcers away but not helped with tastebuds - I think only time will improve those. 

 

So T 2 was very much easier and also it helped I think as at least I had an idea of what I was up against and how different it felt from FEC. Everyone is of course very different but I hope this helps you to feel less worried.  

 

All the best,

 

Rosie xxx

 

 

Member

Re: September 2016 starters

Hi 7oanne,

 

I too was poorly with the first Taxotere and had 24 hours in hospital with a temperature and IV antiobiotics. Because my bloods were low and I have another autoimmune condition I was changed to Taxol which is administered weekly and is tolerated better.

 

I have felt really rough at times even on this but had no more temperatures or admissions to hospital since. My blood counts have been so low they considered a transfusion at one point and I've had a couple of separate weeks off to recover from doses and seen the oncologist a couple more times than planned. My fingers and toes are also numb but not painful. 

 

Each case is individual and you need to honestly answer the questions you get before chemo to help them decide if you are fit enough for your injections or whether they need to consult the oncologist. I would also suggest you talk to your breast care nurse about how you're feeling. I'm really lucky that mine is also qualified to work on the chemo unit so she's very well informed about side effects etc. 

 

Hope this helps

 

Good luck and hugs

 

Cathy 

 

 

Member

Re: September 2016 starters

Hi Jo,

 

I started in the last days of September and am now in my 2nd T cycle. Like you, I was wary after the first T because I had really bad fatigue and bone pain from the Filgrastim. I had the 2nd T on the 21st and so far so good. It has been better up to now. 

 

Don't want to tempt fate but the bone pain was controlled and although the fatigue is bad, I have felt a bit better today on D8. No huge gut issues and only a slightly sore mouth. The worst has been the awful taste disturbance but I have been eating - though not very healthily!

 

So, though I know we are all different, I just wanted to let you know that the 2nd T is not inevitably worse than the 1st.

 

Wishing you minimal side effects next time. Good luck! 🍀🍀

 

Sue O xx 

Member

Re: September 2016 starters

Hi Everyone, 

I hope you are all doing ok and looking forward to finishing your treatment.

I'm actually an October starter and had my first T cycle a couple of weeks ago. I didn't take well to it and ended up in hospital last week for a couple of days with a high temp (just before Christmas). They brought it down though and I'm now on antibiotics. I also had sore nails, the runs and an itchy rash on my chest under my neck. 

Because of that I am petrified of the next T cycle (next week) as I am worried what will happen. The hospital oncologist said that I wasn't well due to the change and overlap between the FEC and the T cycles and my hubby says that it may not be as bad next time, but I have also heard that the second T cycle is worse than the first one. Is that true?  Have you been worse on the second T cycle compared to the first? (I know everyone copes differently).

I'm starting to get palpertations just thinking about it!

Can anyone give me advice?

Jo xx