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February Chemo Starters 2018

Macneech
Member

Re: February Chemo Starters 2018

Hi Ladies - like jude51 says - it has been quiet on here lately.Hopefully a sign that we are coping and not the opposite! Being Feb chemo starters some of us are nearing the end of our chemo journey😁

I am day 7 last T so getting there. Achey joints/ muscles, bit gripey but not too bad.Nights have got worse not better grrr😕5th out of last 7 injections tonight (counting them down)!!😁

Chemo done - although for some ( according to recent research on the news there will be less needing chemo for breast cancer in the future).Bit late for us and I am glad I  have had it as grade 3/need everything going!!

More news this morning 're american trial with miraculous immunotherapy  - my oncologist hasn't mentioned this so again I assume this is related to tumour cell type??

Mastectomy,axillary clearance and temporary implant (as only have small boobs) for me next.Any advice greatly appreciated.

Thinking of everyone xx 

Bibi
Member

Re: February Chemo Starters 2018

Thanks Jude 😊

Its my last chemo Thursday- hoping I will start on the road to feeling better then - although I have been feeling well the last week I’m still struggling with toilet issues at times and it’s really annoying. 

Hope everyone is doing well xxx

jude51
Member

Re: February Chemo Starters 2018

Hi Ladies - bit quiet on here lately. Hope everyone is doing ok and not suffering to much with side effects. Big hugs to those with treatment this week .

Good luck Bibi with trying to find a bra - i found it a nightmare ! x

Bibi
Member

Re: February Chemo Starters 2018

I haven’t investigated travel insurance yet but at support centre someone said they had used a company called Holiday Safe and got an affordable quote .

I still have a few eyebrow hairs but feel much better when I draw them on - got some stencils and eyebrow shadow and they are really helpful, powder stays on for ages and stencil gives a good shape .

Good luck with the bridesmaid shopping.

I am still hunting for a nice post surgery bra - most places only seem to go up to a DD or E and I need a bigger one. There are some suppliers online but I like to try on. M and S have one in my size plus a sports bra  - not impressed and emailed them to let them know. They did email me back but whether anything will change anything I don’t know. 

Have a good weekend everyone xxx

Macneech
Member

Re: February Chemo Starters 2018

Light at the end of the tunnel Bibi - sounds lovely having your break away at the lakes.

I  had my last Docetaxol weds and it went really well - anticipating falling off my perch however over the next couple of days. Planning to go bridesmaid dress shopping Sun - (daughter is chief bridesaid for friend in South Spain- first week in Aug).Hoping to go out there with her post mastectomy before rads - haven' discussed it with consultant yet plus there is the travel insurance issue😕).

Anyway not even sure I can get to the dress shopping yet if mega fatigue and colic kick in.Like you Bibi the tummy troubles seem to take ages to settle( couple of days before this cycle) but it is tolerable.

Only have a few eye brow hairs left on right side - sleep on my left mostly so I think I may have rubbed them out! But definite bum fluff growing back on my head 😁.Mastering the make up - drawing on the brows and black eyeliner for eye lashes reduces the 'Gollom' look.Posted a picture of me completing my chemo on facebook weds and had over 100 responses and comments( have worked for the NHS for 30 years so have made lots of contacts).Bit disconcerting when loads  of them said how well I looked - I must have looked rough before!!

Hoping everyone else is doing ok - thinking of you all xxx

 

Bibi
Member

Re: February Chemo Starters 2018

Good morning all - currently sitting outside my Motorhome enjoying the beautiful views in the Lake District 😊 feels so good to be having a little holiday .

Macneech hope all goes well on your last lot today - agree the whoop whoop it’s over feeling will probably be when you have recovered from it - hope the SE’s are not too bad for you.

Wee Burd how great that you have an end date and a lovely family event to look forward to afterwards 🎉

Daisy hope all your house stuff gets sorted - as if we do t have enough to contend with -must be good to have your sons support to get you through.

Im hoping the good weather in the lakes continues before I get back for my last lot next week - feel like I’ve just about got over the last lot - although the tummy troubles grumble on. 

Look after yourselves everyone xxxxx

jude51
Member

Re: February Chemo Starters 2018

Fantastic news Wee Burd ! xx

Wee Burd
Member

Re: February Chemo Starters 2018

Hi All, yesterday was my 100th day since starting chemo. Have been a lot better this cycle since the dose was dropped a notch however yesterday forgot to do my filgrastim injection and have had a bit of a relapse today. Couldn't move this morning and have been flat out on the couch since I got up around lunchtime. Catching up on trashy tv! On the upside I have been sent my radiotherapy appointments and should be finished all treatment by the end of July - just in time for my parents' diamond wedding anniversary! The end is in sight!
Macneech
Member

Re: February Chemo Starters 2018

Great to read your positive post Daisy200.Completely with you on the zombie effect!! I am week 3 post Tax and atlast I think my insides have just about settled down for the next lot.Weird that I seem to have achy  muscles not joints whenever I go to move - grrr(why do the side effects take so long to go)??

Taste is back though - yippee! 

Last chemo for me tomorrow if bloods behave. I will be counting down those horrible filagristine injections.

Looking forward to having a bit more energy than a gnat - I  don' think l will actually feel like embracing the (I've survived chemo) thing until atleast mid June when hopefully I will be feeling less zombie.

There is light at the end of this horrible tunnel .

Hope everyone else is coping 😗

Daisy200
Member

Re: February Chemo Starters 2018

Hi Ladies, and thank you for your lovely comments. Last Friday on a steroid high was fine, but I honestly can't tell you what happened to Saturday, Sunday and Monday. Just zombied through really. This disgusting taste in my mouth is wearing me down now, I'm hungry but don't want to eat anything because everything tastes so horrible. I'm up, washed and dressed and just about ready for bed. It seems hard to believe that we won't always feel like this. Also torture watching everyone else have an amazing bank holiday weekend over Facebook.

 

Just had my house valued for sale as I'm going through a divorce (my choice, left husband for another man who turned out to be a complete arsehole) so at least I've got something else to think about. That and obsessively looking in the mirror to see if I've got eyelashes yet.

 

And the too hot, too cold thing at night. Yes, me too. Although to be fair, I was heading that way before chemo anyway, but it does seem to have made it worse. I've found light cotton PJ's and sleeping on top of the covers about the best way. Thank God I'm sleeping alone at the moment, I think if I had to justify my erratic night time behaviour I might end up doing time. 

 

But we've come such a long way lovely ladies, let's not lose sight of that. I was chatting to my youngest son last night, he lives with me so he's seen the whole journey. Diagnosis and surgery last Christmas seems like a distant memory now and soon this chemo will too. And all of its side effects. Just got four weeks radio on the horizon. Onwards and upwards xxxxxxxx

 

jude51
Member

Re: February Chemo Starters 2018

Hi ladies - hope you have had a reasonable weekend and SE not to bad. 

Struggling a bit today - just so fed up with it all and desperate for a good nights sleep. My body is functioning ..just....but my head is all over the place. Guessing its just the lack of sleep and possibly effects of chemo...just want it to end now. 

Wee Burd
Member

Re: February Chemo Starters 2018

Well done Daisy for making it through to the last treatment. You'd think you'd be laughing all the way but emotions are all over the place. Hope the side effects are not too bad for your last time on the merry go round. Hugs due big style for reaching the finish line xx
MissGreen
Member

Re: February Chemo Starters 2018

Hi Ladies

Well done Daisy to making it to the end of this stage 😁. Sounds like Docetaxel has floored most of us over the last few days. I don't mind admitting i have felt sorry for myself the last few days. Side effects are taking their toll, although they don't seem as bad as cycle 4. It's the wobbliness, tiredness (slept for 12 hrs last night) and mouth issues which get me down. I kicked myself up the bum, painted my toe nails and got outside on a sun lounger today.

Question for all of you who have had nail issues ..... my finger nails were really sore and now two are lifting. How do you know when infections set in? The reason I ask is I took off my nail varnish and wish I hadn't as they look disgusting 😫🤢

Love n Hugs

T

x
Bibi
Member

Re: February Chemo Starters 2018

Well done Daisy - what a relief for this part to be over for you 🎉

Hope you don’t have too many SEs and recover quickly xx

I have had another rubbish day from it - got up and felt fine, had breakfast , took dog for walk and it was ‘hello sofa’ again - can’t shake off the nausea , haven’t eaten since breakfast, slept all afternoon- grrr so frustrating as I have so many things I want to do. Hoping it will pass soon 🤞as have booked a week away in Lakes next week and am soooo looking forward to it.

Take care x

Daisy200
Member

Re: February Chemo Starters 2018

Hi ladies,

 

Just home from final dose of docetaxyl. I thought I'd feel happier than this, but I've basically blubbed all day. So glad this part of the journey is over, although not looking forwards to the next week or so with the after effects. I've definitely found that part harder on the T than I did on the FEC. But at least it's the last time and no more fecking cold cap agony to face either. To be fair though, the agony has been worth it, as long as it doesn't all fall out this time the cold cap has worked brilliantly for me.

 

Thinking of you all xxxxx

jude51
Member

Re: February Chemo Starters 2018

Macneech - Mine has elastic straps so doesnt move off pillow. Bit uncomfortable when lying on my side (squashes ear !) but hoping it might soften up a bit with use - can but try. Loads on Amazon but got mine from Notanotherbunchofflowers.com. Quite a bit more expensive but i'll try anything !

Oh Chrissy you do make me laugh ! Has to be some humour otherwise you'd be a constant blubbering wreck. I've been very fortunate with this weekly Paclitaxol - no GCSF injections and no real side effects, just a bloody nose and the night sweats. My taste is still a bit off mostly with milk but bearable - have cut down on the coffee to see if that helps with flushes/sweats. 

I agree about how quick it has felt now we have got to this stage - be good to see the back of it and move on. Good luck for hopefully your last chemo ! xx

 

Chrissy68
Member

Re: February Chemo Starters 2018

Hello girls
It’s so nice to hear from you all and I do wish everyone wellness through this horrible journey.

Thankyou for suggestions re hot sweats I think either I’m getting used to it or sleeping commando is helping . God help if anyone sees me at night with my firm implant, dangly fried egg boob,wiggly wire (Hickman line) and no pubes ! Oh and bald head !

Anyway I agree yes the doxcetaxel is yuk I too have such yuk mouth changes aches and pain . Think the Gcsf doesn’t help either .

But I’ve also got red rosey cheeks that I look like a gnome and my left hand finger tips are numb like pins and needles . Has anyone else the same .?

Still got nails lifting and all the nails hurt . I too will have 1 to go potentially on 5th June ! Then I’ll be onto radiotherapy and possibly auxiliary clearance but won’t know until they have a meeting to decide .
Hope everyone is managing this poison but we’re all getting there in a strange way I feel it’s gone quick but also it seems that it’s been forever xx
Macneech
Member

Re: February Chemo Starters 2018

Hi Jude51,I  bought a cooling pillow - JML £10 in Asda it feels cool but seems really heavy and uncomfortable to lay on despite being in a pillow case.Is there different types??

jude51
Member

Re: February Chemo Starters 2018

Evening all - that Docetaxal certainly has some nasty side effects but really good to hear Bibi and Macneech that you are almost done with it. How many more cycles have you got Wee Burd ?

My hair is growing back at a rate of knots - got a good cm and its getting thicker, cant help stroking it.  Its strange but i have got so used to no hair that when i tried on my wig it just looked wierd ! In retrospect i shouldn't have bothered getting it as i have only worn it once. Well done on sticking with the cold cap Wee Burd. Eyebrows and lashes definitely thinner but hanging in there.

I've bought a 4.5 tog duvet and although it gets kicked off at times its better than a sheet. Have also bought a cooling pillow  - first try tonight so will feed back. 

Big hugs to everyone  xx

Macneech
Member

Re: February Chemo Starters 2018

Evening ladies - like you Bibi and weeburd I have been suffering the nasties of Docetaxol.The first couple of days with steroid high  give you a false sense of security 😕.No sickness for me fortunately but horrible gripes and Wind  - tried to keep to the Almond and coconut milk and low fibre diet- really hard when you can't taste.

I think the taste issue goes on for much longer with Docetaxol than the Fec.Then there is having the energy of s gnat - I do a bit, lay down then do a bit more.

Wee Burd -I  can't   believe you have held on to your hair! Not sure if I  can feel a 4m or two of baby fuzz on the top of my head?? About 5 eyebrow hairs left on the right and about 3 on the left.Getting quite good at drawing them in now ☺No eye lashes  - I used to have really long ones 😣

Again like you Wee Burd  my Hb has been dropping with each cycle- had done spinach - will move on to steak!!

Last Docetaxol for me next weds - whoop whoop! Worst bit of the journey over for me I hope.Have surgeon appt  7th June for mastectomy and axillary clearance. Planning to have overnight stay with temporary implant - this is what I have been recommended ( I think because I have small boobs).

I will be looking on here for advice 're the surgery next.

Good luck to everyone having hopefully their last treatments xxx

Wee Burd
Member

Re: February Chemo Starters 2018

Hi All,
Back on the treatment tricycle today. Saw oncologist yesterday and she has knocked the docetaxel down a notch in the hope it doesn't send me quite so low this time round. She was concerned I might not have recovered enough for treatment today but temperature check and second blood test were ok. My haemoglobin was bizarrely low but apparently possibly just a blip but good excuse to treat myself to a few nice steak dinners! Steroids have kicked in so am ravenous again although I also couldn't get a decent sleep last night because of them. Had my treatment today and so far feeling ok now that my brain freeze has cleared! Cold cap has been working pretty well for me. Hair still hanging on in there. My eyebrows have more or less completely gone now apart from one remaining hair and some stubble! Very few eyelashes too. I went out to a friend's wedding party on Saturday (not the one in Windsor 😂) and tried putting on mascara for the first time in ages. There was barely anything left to catch it😃.
Hope everyone is coping and able to enjoy a bit of fresh air and sunshine. I'm making the most of it while I can as I'm expecting to be flat out by Saturday. Hugs to you all xx
Bibi
Member

Re: February Chemo Starters 2018

Afternoon everyone - hope you are all sorted with the hot flushes - I barely use a duvet and have window open all night - just too hot. Had 3rd Docetaxol last Thursday and after an initial good couple of days I am struggling to feel well - nausea and disgusting taste in mouth that just keeps lingering 😒 

Was feeling really good this morning and mowed the lawn, went out for lunch and just felt horribly sick and had to come home 😢 - so fed up of it. Sofa is my best friend atm. 

At least the sun is shining and I can watch hubby working lol😅

Hoping to get away next week for a break so let’s hope this weather holds 🤞

One more to go - can’t wait! 

Take care everyone xxx

Camilla9
Member

Re: February Chemo Starters 2018

Thanks for all your helpful comments. Just wanted to be as prepared as poss to help it all go smoothly. All rather daunting...never had an Op before!

Kitty75
Member

Re: February Chemo Starters 2018

Hi Chrissy night sweats are awful aren't they? I am 4 weeks post last chemo and still having. My only tip is to keep a wet facecloth next to bed and when I wake up with one put on head or back of neck -helps to a degree... it's the insomnia they bring rich is also challenging!! Chemo the gift that keeps on giving😂
Anyone suffer with fluid retention? Really struggling with that at mo.


Chrissy68
Member

Re: February Chemo Starters 2018

Thanks girls yes I hope it goes after next chemo it’s horrible and so disturbing at night xseeing oncologist fri so will ask if any help . Has anyone tried sage tea ? X
jude51
Member

Re: February Chemo Starters 2018

Chrissy if this is hormonal sweats I sympathise! I've had them for the last month and it's miserable at times. Duvet off - just the cover and a light blanket which usually gets kicked off too ! Fan if needed but too noisy for my liking. Window wide open even if cold outside. I'm cold most of the time but if I try and wrap up it just sets them off. Might buy one of those cooling pillows as mine gets turned over constantly. Hoping it will settle a little once off chemo but who knows.
Wee Burd
Member

Re: February Chemo Starters 2018

On my last chemo (1st docetaxel) I got really shivery at night and took a hot water bottle to bed. Had it stuck at the small of my back as it was the only relief I got from the shivers. I then found by the morning I was sweating but couldn't find any way to relieve the hot sweats sorry. It really only lasted about a day and a half like that before I started to feel a bit more normal again.
Chrissy68
Member

Re: February Chemo Starters 2018

Hi sorry to change the conversation but a quick question I had 5th doxcetaxel on tue and the hot and cold sweats are driving me crazy at night and constantly waking me x
Has any one any tips ? X
jude51
Member

Re: February Chemo Starters 2018

Oh yes I completely forgot about the cushion for support - again they gave them out at the hospital but I had one made for me too. Heart shaped to fit under your arm but any cushion good. Took me over a month before I could sleep on my side so hubby also bought me a giant u-shaped cushion which was fab.
Wee Burd
Member

Re: February Chemo Starters 2018

Camilla I had lumpectomy and sentinel node biopsy. I couldn't get a front opening bra so ended up with a soft ( not underwired) one with a larger back and smaller cups than my usual. I didn't have any drains to cope with. I did have some swelling but it wasn't too enormous - basically just put my breast back to the size it was before the lump and margin were taken out.
The sorest part was under my arm where the node had been removed. Putting the bra on was a struggle to go home that night because of that but my husband helped me to get dressed. After that it quickly became much easier especially after the exercises. The lumpectomy site gave me no trouble at all. But make sure you have plenty of good pain relief and I used a cushion at night to support my arm so that I could get some sleep.
Chrissy68
Member

Re: February Chemo Starters 2018

Hello everyone
Camilla if you scroll back quite a few pages there is a web site I put on from amazon for bras . I found these really good and when I am feeling normal again (i hope that will be after radio) I will use for the gym so at least not wasting money . I would recommend anything Front fasting as you will not have range of movement so that’s bras pjs and tops it will make life easier for dressing and carrying drains . As Jude said make sure u ready to be discharged home I had lot of pain and they wanted me home but refused (think it was as it was Xmas time and no staff ) . Drain bag was provided by breast care nurses who will visit after and physio . As said before make sure you do exercises religiously especially if you having radio at later date to . Good luck 😉
jude51
Member

Re: February Chemo Starters 2018

I wore Pj's but the t-shirt tops were quite loose so easy to get on and off  - they suggested button up tops but didnt want to buy anything i wasnt going to wear after.

I had a drain bag i took in (bought from drain dollies) but they actually provided one anyway. Invaluable as i had two drains and they get heavy. Also useful as i got up a couple of times and forgot i had them...dropped on the floor - well stitched in so risk of falling out ! They show you how to empty them and record the amount - its not hard. Woody mentioned about having a district nurse in daily - i was never offered that but as i used to be a nurse i wasnt bothered. Theres always someone to ring if you have problems though. 

The one thing i wasnt expecting was not being able to shower until drains out and dressings off - that first shower was bliss. Again that might be different for you but worth checking. 

Bras are a nightmare - i am def on the larger size and there is very limited availability out there. I was provided with a front opening bra to take home so didnt have to buy one - not particularly uplifting but very stretchy and comfortable. The dressing was just one layer - no padding. I would just go with normal size bra as a little tighter to begin with is no problem  - can always loosen off if needed. Alot of it is trial and error - just adapt as you go along. 

Camilla9
Member

Re: February Chemo Starters 2018

Thanks v much Jude.

 

What did you wear in hosp and to deal with the drains?  I don't normally wear pajamas as I get hot in bed and have bought a couple of nightshirts. Hope they'll be ok. 

 

I'm having a lumpectomy and have been advised to get front opening bras which has proved diff. M and S do sports ones which are too small for me. Have ended up with a nursing bra via the internet but size is diff as don't know how swollen I might be plus padding from wadding covering the incisions. Just want to get things right to make the whole experience easier and go as smoothly as poss.

 

Also, my husband not the nursing type so discharged from hosp and then dealing with it all oneself at home quite daunting.

jude51
Member

Re: February Chemo Starters 2018

Hi Camilla9 - just thought id add my experience too. I had mastectomy and axillary node clearance 19th dec. I had the option of a day case but ended up staying in for 2 nights as quite painful - extra bit of morphine at night was bliss in helping with sleeping ! Went home with minimal painkillers (paracetamol/ibuprofen) but actualIy it was the axilla/drains that were more uncomfortable than the mastectomy site. I had my drains out after a week but needed seromas draining weekly at the hospital for about 3-4 weeks - not painful at all as everything is so numb. I would agree about keeping up with the exercises. After a couple of weeks i realised although i had pretty good movement ie i could get arms above my head i had to really stretch them to get any further. I found i could reach the top of the shower screen and literally hung off that - will do no harm, just little and often did the trick. Within a week or so i felt much looser. Now 5 months on i dont do any specific exercises but i have started back at the gym with my PT so keeping up with stretching and building up strength. I still have some numbness in the back of my arm,axilla and mastectomy site - not sure how much improvement there will be but def better than after surgery. Also was back to driving after about 4-5 weeks. 

Hope thats useful - must admit i wasnt sure what to expect after surgery and everyone is different. The advice and support available from hospitals can be vastly different too so be guided by them. Good luck ! x

Camilla9
Member

Re: February Chemo Starters 2018

Thanks, Woodie.

 

How functioning is your arm now? Do you feel more or less back to normal? I am doing jobs round the house  and gardening while I have 2 good arms before the op on Weds as I don't know how long I'll be out of action.

 

Hope you're doing ok now.

Moijan
Member

Re: February Chemo Starters 2018

Actually woody, I didn’t have that...I’d get that checked out by my gp. I was getting swollen legs and wondering if my heart was having a tough time.....so have just had an echocardiogram.

 

we are more prone to blood clots a cancer changers the clotting mechanism

 

hope all goes well

 

Moijan

Bibi
Member

Re: February Chemo Starters 2018

Hi Chrissy - I don’t think I have any phlebitis atm but will keep an eye out thanks - so much to monitor! 

Yes just one more to go - an extra one from original plan- so hoping I can see it out now on a cannula 🤞

Had a nice morning planting my pots - the reaction from this chemo - Docetaxol- seems to arrive after a couple of days so making the most if feeling reasonably good.

Bibi x

Chrissy68
Member

Re: February Chemo Starters 2018

Hi Bibi
When I had my mast reconstruction and snb I was due to stay 1 day but had a lot of pain and stayed 2 nights but like you said it’s nice to get home . I got home really late on 23rd Dec and was so glad as due to Xmas there was no staff . My drain was in for 7 days . Didn’t have any district nurses .
Sounds like you’re having problems like I did with my arm and I ended up with a Hickman line which I’m so glad I did . Massage and stretching the arm helps but make sure you got no phlebitis otherwise you’ll need antibiotics perhaps give the unit a ring. Have you got one more chemo to go?
Bibi
Member

Re: February Chemo Starters 2018

Good morning everyone

Hi Woodie and thanks for that info - I have one more round of chemo and then will be having the same surgical procedure- I am quite anxious about it so that is useful to know. Interesting that it was just a day case as it seems such a big op - but who wants to be in hospital if they can go home - nothing like your own bed. My hospital have indicated it will probably be overnight but still have to discuss it all with surgeon.

Ive been having my chemo through cannula and have coped fine but noticed yesterday some cording developing in my lower arms, have felt a pull in right arm for a few weeks but have a dent as well now and one developing in left arm . Anyone got any tips on how to help veins cope/ recover? Have read heat packs and massage help. 

Feeling OK today after chemo yesterday - not dead lively but up and about and pottering a bit. 

Have a good weekend everyone x

 

Woodie67
Member

Re: February Chemo Starters 2018

I was in & out as a Day case - no overnight stay at all! Right total mastectomy & full node clearance - was good to get in own bed that night and was given a number to ring if worried. The drains were very manageable & were both out in 5 days - the District Nurses visited daily from the day after to sort me out until they were ready to come out. Had a seroma which needed draining twice but again don’t worry that was painless. Pain relief was really good while on the ward and sent home with strong painkillers - important to keep up with them - better to prevent the pain than try & stop it once it starts. You’ll boss it don’t worry x
Camilla9
Member

Re: February Chemo Starters 2018

Thanks, Woodie. Were you out of hosp after one night and did you need a lot of pain relief? Were the drains manageable at home and how long were they in? 

Frewarned is forearmed!

Tx for response.

Woodie67
Member

Re: February Chemo Starters 2018

Hi Camilla9 - re the axillary clearance - my biggest piece of advice would be to do your exercises religiously post-op and keep up with the stretches after even if you don’t feel like it or it’s uncomfortable. I can still feel my muscles and tissue tightening up now if I miss for a few days through sheer laziness. I still have
numbness and strange itching although it is numb, as if the nerves are doing their best to recover.
I would say it has got a lot easier over the last 4-6 weeks. I won’t lie, think the axillary clearance was tougher than the mastectomy bit of my surgery in terms of recovery but I needed it and worth it to get rid of those pesky nodes! You’ll be fine I’m sure.
Chrissy68
Member

Re: February Chemo Starters 2018

Hi jencat
There is a lot of positive info on reputable web sites such as cancer research so don’t be afraid to read around the subject as I think you’ll learn it’s not all doom and gloom . There is a lot more going on in America too and positive things . Alot of research is going into TN .
Don’t be afraid to ring the consultant about your results . I did this after 6 weeks had to wait another 2 weeks to be seen but then at least you’ll know they are back .
Like your friend said eat healthy which I did before and I was extremely fit before ( not now since treatments) and live your life and enjoy things. It is scarey knowing there is no other treatment available but you must try to focus on life otherwise it will get the better of you. As you mentioned there are many TN survivors out there . I found someone like me in breast cancer support was useful and I communicate monthly with another TN survivor it helps that she had the same diagnosis as me and gives me hope x
Jencat
Member

Re: February Chemo Starters 2018

Hi Chrissie and Woodie, I'm from the Oct thread and TN too. I had WLE and then chemo, so another one who had the op first. I finished chemo at the end of Feb and now half way through rads.

I haven't googled about TN because the breast nurse said that all the worst stories come up first and the info can be out of date anyway.

I was also fortunate that I found the lump myself as I'd got another 8mths until my mammogram was due.

At the moment I'm waiting for the results of the BRCA testing, I was told 8-10 weeks before I got them and it's been 9 weeks now and I'm starting to feel a bit anxious! I've also got 2 daughters, 24 and 29, so I'm concerned for them.

On a positive note, I've got a friend who is TN and has been fine for 10 years and my ED has a work collegue who is 6 years clear. I asked my daughter if her friend had any tips and she said that she eats healthily xx

Chrissy68
Member

Re: February Chemo Starters 2018

Well I would definitely make sure your girls get sorted too x hope it all goes well for you x
Re wind and belching it will pass I had it before . I find I lose one thing then another thing starts unfortunately. I’m getting ready for bed now as so tired but good luck with everything and hope you get some questions answered xx
Katsy
Member

Re: February Chemo Starters 2018

Unfortunately I have wind at the other end since starting on T. Any advice gratefully received! 

Katsy
Member

Re: February Chemo Starters 2018

Unfortunately I have wind athe other end since starting on T. Any advice gratefully received! 

Woodie67
Member

Re: February Chemo Starters 2018

2 girls aged 23 & 26.. My Mum had ovarian Ca at age of 49 so I had prophylactic hysterectomy & ovaries out at 43 - she was subsequently tested for BRCA and found negative and a letter from 2006 said “this is reassuring for your daughter “ so I didn’t bother with the breasts other than mammos yearly - oh how I regret that now! My surgeon said I need the counselling & things have moved on since then in terms of predicting likelihood so hoping it will help inform my decision re other breast and also for my girls in the future.

Back to T side effects - any advice for constant belching/wind?! Can’t seem to shake that off either?
Camilla9
Member

Re: February Chemo Starters 2018

Hi Woodie, I'm jumping in from the December group. You mentioned you had a full axillary clearance - I shall be having this next Weds.

 

How was it for you after the op? Any hints, tips, do's and don't s gratefully received. I go home after one night in hosp which seems a bit quick to me...

Kitty75
Member

Re: February Chemo Starters 2018

Hi all
Side effects definitely get worse the further along you go don't they? Sorry to hear people are suffering with sore nails and breathlessness. I have been a bit quiet as have really struggled with SE s this cycle. I am so pleased to say that I have finished chemo and hope I never have to do that again!! Had 4cycles of TC and the fourth T completely wiped me out..

I too have been breathless on movement, sometimes just whilst sitting so bad last week was referred into hospital with a suspected PE. Thankfully scans were clear and they have just said it takes time for chemo effects to wear off. I have such terrible fluid retention in ankles legs and arms weirdly!! Anyone else suffer with that? Anyone got any miracle cures?

Have been getting gel nails done fortnightly to protect nails but sadly mine have mostly gone black and have dark ridges in some.

Must focus on the positive though and I still have some hair at front and sides. Nails are still attached and I am upright and head is off pillow! Am hoping radiotherapy is kinder to me !

Thinking of you all hope everyone has a Good week and all side effects ease up. It is such a challenging time but we are doing so well.
Take care