Anyone starting chemo August 2015?

[Bibi44]

Good to hear ladies! I have two friends recently diagnosed, both headed for surgery in the next week, & a friend of a friend half way through FEC-T. I really wish we/theycould find a way to prevent it, so people don't have to go through it all.  I'm completely fine now, bar a few aches in the mornings & 50:50 hair, half of it is its usual straight soft well behaved self & the other half its mad frizzy out of control cousin. Unfortunately mad frizz bomb is on top!  Tennis elbow FINALLY showing signs of improving, Brave. Might be nice to check in & have a catch up around Christmas if you're up for it.  I feel this group saw me through a major life event & I was sorry to lose contact with everyone. Good luck with your bike ride. xx

[carolec]

Hi All, I had yearly mammogram a few weeks ago and all ok here - glad you are both doing well xxx

[bravescholar]

Hi all! Yes, Bibi, it's been a while since this thread was live. That's great to hear on the mammo front. I have a six-moth check up tomorrow with the breast surgeon. I have nothing to report, I'm glad to say. Next 6-monthy Zometa is in September then 2nd annual mammo in December. All good on this front. Love and best wishes to all. xxx

[Bibi44]

Just got the all clear on my two years on mammogram, which brought back thoughts of June 2015. Hope you are all happy & well too. xx

[bravescholar]

Good to hear from you, Carole. Glad your early-year panic was just that. 

I've had three cycles of zoledronic acid now and I really have to say that in terms of side-effects, other than some bone ache after the first one, I honestly wouldn't have known I'd had them. Sorry! Hope you fare better with your future cycles. 

Your anecdote about your daughter having calmed down now she has a boyfriend is funny. My two boys are close in age and I'm afraid are very much partners in crime. Bring on the girlfriends!

All the best over Christmas and for 2017 too! xxx

[carolec]

Hi Bravescolar

Glad to hear your mammogram was ok and your bone scan - what a relief.  I know what you mean about thoughts of recurrence - I panicked at the beginning of the year when I had neck and head pain but turned out it was stress and probably a bit of arthritis too!

I think I can recall you saying you were being given zoledronic acid every 6 months - if it was you, how are you getting on with that.  I had my first dose in September and was really sick for a few days.  Just wondered if you have been ok with it.

  I can relate to the stress with teenagers.  Luckily I have only one party girl out of my three children - the other two are no trouble.  I call her my problem child but hopefully she's settled down a bit since she went to uni and she also now has a boyfriend so she's not so much of a party animal anymore!

hope you and your family and everyone has a lovely Christmas xxx

[bravescholar]

Hello everyone! Just thought I'd log in to send everyone best wishes for the coming festive season. 

I'm loaded with a cold, but had a clear mammogram and ultrasounds on Monday (my 1st since my op last yr on Dec 19). I mentioned a pain in my hip that had been coming and going for a couple of months to the consultant who gave me my results and he whisked me in for a bone scan two days later. Said he'd been in this game long enough to know not to leave anything to chance. It was all clear on the bc front but I have some early arthritis in my lower back and knees that could be causing the pain in the hips. Am on high-dose ibuprofen for a week to try and reduce inflammation. Given what it could have been, I guess I should be grateful. I'm still playing tennis and running, work is good and generally I've been doing ok but I am still finding things quite tough in terms of keeping that fear of recurrence in check..

My boys are proving difficult.There's a lot of, how should I put it, experimentation and partying going on. I find it quite hard to handle.

I'm looking forward to a quiet Christmas.

How's everyone? It's tricky, isn't it? Sometimes you don't want to ask how people are because you're scared of the answer. But you know what I mean, we were all in the same boat. Sending very warm wishes to you all. xx

[jhbee]

Hello,

Just thought I'd send a message to say that I hope all you August '15 fellow chemo friends are all doing ok a year down the line!

Would love to hear how some of you have been getting on.

I've been getting back to work and managed to spend lots of time with the kids over the summer holidays.

Mostly managed to move to a less panicky state of mind but still have some relapses on that front!

Jools xxx

[Bibi44]

Actually I came across LisaJane on another thread the other day.  She said she had been busy with her children. x

[carolec]

Thanks for your comments - glad to hear you've almost finished rads Bibi and Lisa good luck for Monday. Hope Brave is ok and everyone else on here - haven't heard from Tania, Debs and the other Lisa for a while - have s good weekend xxx

[Bibi44]

Lisalou good luck for rads on Monday xx

[Bibi44]

Hi Carole Sorry you've been a bit down & hope you are feeling a bit more perky for the weekend. 2/3 through rads & this time next week will be finishing.  Can't wait,  Have a good weekend xx

[Lisalouw]

Hello ladies , lovely to hear from you , it's gone pretty quite on here, I hope that means everyone is well and getting on with life , I'm due to start my rads on mon for 15 sessions , I notice a few are doing the breath holding , it wasn't mentioned to me at all , what's it for ? Poor you brave with the cellulitis , was it due to the radio and the problems with your recon or just unlucky with the rads , I'm glad your feeling better now and I'm so impressed your cycling , did you do a lot before all this , I'm wanting to take up some form of exercise , I don't have a bike though so that's ones out of the window , maybe I'll start with some gentle walking .
Hi Carole , sorry your feeling down , I'm not back at work yet but I can remember from last time when I started back at work that's when I started to feel stressed , I'm not looking forward to it at all , I work for the Nhs and it's all down banding , more workload and doom and gloom , I really dont want to go back full time , you have done the right thing by not going in and a holiday with your mum is prob just want you need , have plenty of treats and you time , hope you pick up soon , and if not give your breast care nurse a ring , Lv to both of you xxx

[carolec]

You poor thing Brave with the cellulitis but at least they whipped you in quick and it's improving with the antibiotics. I wasn't too keen on the breath hold but you do get used to it after a few goes. I'm feeling strangely down and extra sensitive at the moment and have called in sick at work as can't cope with work this week, especially as they are trying to push me into making decisions re changing my job. I'm sure it's just a glitch and I'll feel better next week and I've decided to take myself off to my mums in London tomorrow for a few days for a pick-me-up xxxx

[bravescholar]

Carole... yes, I do the deep breath hold. I find it strangely relaxing!

[bravescholar]

Hi Carole,

Good to hear from you. 

I finish on RT Friday, so just two more sessions to go. Can't wait; I have been more ambivalent about RT than about the other parts of my treatment (athough not too keen on the thought of taking osteoporosis-inducing drugs for the next ten years either!). I developed breast cellulitis a week into treatment and spent two days in hospital on iv antiobiotics. It's getting better... slowly. I have a dressing on the area where it's reddest that they take off and change at every session. I'm feeling fine, though, after having felt very, very tired after the first few sessions. I've been cycling to the clinic, which has been good.

The reconstruction has looked better. It's red, hot and swollen and a bit hard in places but I'm not panicking yet. Hopefully things will settle down post radiotherapy.

How are you?

xx

[carolec]

Hi how is everyone doing?  Brave have you finished radiotherapy and do you do the deep breath hold?  How is treatment going for everyone else? hope you are all ok xxxx

[bravescholar]

Hi all,

Thanks for all your concern. I'm feeling better this week... helped, I'm sure, by having been out on my bike again, for the first time in three months! I may well still try The Haven, though, after all those endorsements. Am feeling very tired, but that may not necessarily be the radiotherapy; it could be any number of things as you've all pointed out! In fact, it'd be surprising if I weren't tired and emotional! I still find it hard not to be upset at feeling upset, if you know what I mean. 

I'll be fine!

Enough about me... how are YOU all doing? xx

[Bibi44]

Thanks for the info on exercise Carole. I started my tamoxifen last week & I'm mindful of the fact that lots of ladies say exercising relieves the SE, so I want to get moving again. I hadn't thought about the impact of rads on exercise, other than being limited in the type of sport you can do, due to the lack of a bra. I am so enjoying having my energy back, that I can't bear the thought of losing it all again during rads grrr. xx

[Lisalouw]

Hi brave , how you feeling ? Sorry your feeling down , it's such a long road of treatment , and with your dad as well , it must be just all consuming at the moment , so no wonder you not feeling yourself at the moment , do you have anyone you can talk to , I did do the counselling the last time and it helped , I keep getting down moments and then they pass so I'm hoping yours has too , I've got the cording too , I can't straighten my arm for it , my shoulder fine though so I'll be ok for rads , I think when you have been through as much as we have everything builds up and the little things you could put up with before just feel like mountains , if that makes any sense , sending love and hugs , xxx

[carolec]

Brave, I agree with Bibi and You're bound to feel down after you have been through.  It's hard enough with all the treatment without the loss of your Dad.  I lost my Dad many years ago and still get very emotional.  Perhaps a chat with someone at the haven might help as Bibi suggested or even a nice afternoon out and a natter with good friends.  You have done so well - the DIEP flap is a big op - I know as I had one 6 years ago when my right implant ruptured but the end result is worth it!  Lisalou glad to hear your op went well and your results were good.  Bibi good luck with your rads in a few weeks.  I asked the radiologists about exercise and they told me not to do too much - great excuse - as if your shape changes it can affect the markers so I was only walking.  Tania glad to hear you're ok.  I'm not sure about colouring hair as some say 3 months and some 6 months.  I was lucky with the cold cap but have a lovely white/grey combo with blonde ends!  I've used some lightening spray but think it just makes the roots go whiter so will give it another month or so and then have highlights.  Hope everyone has a good week xxx

[bravescholar]

Thanks, Bibi. Sunshine always makes you feel better, doesn't it! Waiting for friends to pop in for a quicak coffee, so that'll cheer me up too! As you say, Happy Sunday all! x 

[Bibi44]

Brave so sorry you have been feeling a bit down.  In a way completely understandable after months of chemo, surgery, multiple seroma draining and of course your lovely dad & the funeral.  That's a great deal to process & it will take time.  Did you decide to try the Haven for some counselling? Might be worth a look.  Radio is just what you didn't need right now, BUT it is the gateway back to our 'normal' lives & the end is in sight.  Quite exciting really given what we've all been through.  Could also be the hormone tabs perhaps? Big hugs.  Hope you are out enjoying the sunshine today. xxxx

[bravescholar]

Hi all.

Good to hear how everyone's doing. I started rads this past Thursday, so have just had two sessions to date. The staff are all lovely and the sessions have been fine. Boob a bit warm so using lots of the aloe vera gel and oils they've given me. I'm feeling a bit down at the moment what with this and my dad passing away.

On the physical side, I guess I shouldn't complain. The scars from the op are healing well. I have no problem with mobility in my arm and shoulder other than that caused by the cording (which is quite severe, but it will go eventually and the physiotherapist is amazing). The reconstruction has looked better. It's a bit lumpy and hard in places (fat necrosis?) and down the right hand side where the skin had been puckered and red (for which they gave me the antibiotics), it looks like it's collapsing in on itself. The breast surgeon thinks that's to do with the fact that they scraped out everything they could from the diseased boob leaving only a very thin layer of skin for the reconstruction Hopefully it can be corrected down the line. And if it can't, it's not the end of the world.

Hope your little lad's cold gets better, Lisalou. Great news re the lymph nodes being clear (with me 7/10 were "involved", if you remember). That numbness in your arm should eventually go; I'm seven weeks post op and while it's still there, it's so much better than it was. The peripheral neuropathy in my foot is also less severe than it was.

Carole, things sound good with you. Glad to hear it. Bibi, you sound on top form. Re exercising, I can't wait to get out on my bike again. I had thought of cycling to the radiotherapy sessions but I don't want to get there puffing and panting in case it messes up my breathing while I'm being zapped!

Lisajane, all the best for next week.

Thanks all for listening! xx

[Bibi44]

Great news about your results/the liver scan & I hope the physio helps you. Carole I'm dying to start exercising again. When are we allowed back in the gym? Straight away? x

[Lisalouw]

Hello ladies , carolec and bibbi glad you doing ok , very impressed you doing some exercise , I'm not at that point energy wise yet , it's 2 wks since my node clearance and I'm still sore and abit swollen , also got some nerve pain down the outer part of my arm so doing the exercises are difficult , I'm seeing physio on mon , thankfully there was no cancer in the nodes removed , my liver enzymes are playing up though so you automatically think the worst , I've been for an ultrasound and the doc who did the test said she couldn't see anything wrong with my liver so fingers crossed , I should be starting rads mid to end of feb , it's half term now and my little boy woke up full of cold poor thing , typical while he's on holiday , have a great wk end , Lv to you all xxx

[carolec]

Glad to hear you're well Bibi - yes all fine and back to normal.  Just have to get myself into some kind of exercise routine - been doing lots of walking but going to join a gym.  Very conscious of the fact that the letrozole can affect bones and herceptin heart so just want to be as fit as I can as some days I feel like an old woman getting out of bed! Xxx

[Bibi44]

Hi Carole All fine with me thanks. I have another week before rads start.  Nice long break because I finished chemo 2 weeks earlier than planned. Feel almost back to normal & been out & about a lot this week seeing people. Glad you are ok. Did everything get back to normal for you relatively quickly after your rads? Hope everyone else well & enjoying life. x

[carolec]

Hi - wondered how everyone was doing.  Lisalou how were the test results and Lisajane good luck with surgery next week.  Bibi and Brave do you start your rads soon?  I've had two scans in succession - the three monthly echo for herceptin and bone density for the letrozole and both ok.  Have a good weekend everyone xxx

[bravescholar]

Thanks, J. The skin where the red patch is has gone all wrinkled and puckered. Hoping it all settles down. x

[jhbee]

Hi Brave,

I had a fairly small red patch on one side after my mastectomy (double) - had antibiotics - as I seem to remember it was there for around 10 days and eventually cleared up. Hope yours clears up quickly.

Jx

[bravescholar]

Another little pre-rads glitch for me, ladies. A red patch that is warm to the touch has appeared on the reconstruction and I've been put on a course of antibiotics to stop it developing into an infection (if it isn't one already). Hey, ho. x

[Tania786]

Hi all, good to read updates from all of you.
I'm feeling a bit better mentally today, thanks
Still got a cold!
I have loads of grey hair too so was wondering when to colour them. I guess i need a decent length before colouring.

Best wishesxxcx

[Bibi44]

Well done Lisalou. Must be lovely.  I was telling one of my friends how well I feel just being back to normal & she said 'kind of like waking up from a 6 month hangover?', which I thought just sums it up perfectly. xx

[Lisalouw]

Yipee the drain is out , feel so much better without it , it's just results now on thurs , I dread results day , thanks bibi for the hair care advice , I'll have a look on that website , the tax trots are horrible , glad it's settled now , hope your other half feeling better , I got that cold 4 wks after my last chemo and I still have a blocked ear and sinus , everywhere you go people are coughing and sneezing , thanks Jenjen , we have a holland & Barrett local so hopefully I'll be able to get out at wk end and I'll get some of that rosemary shampoo to try , hi Tania , hope you feeling abit better , my mood has lifted abit now so I hope yours has too , love and hugs to everyone , I'm going to walk upstairs and enjoy not having to carry a fluid filled bottle around with me 🙂 xxx

[jhbee]

I mean 'hope' you start to feel better Brave!!

[jhbee]

Thanks for the hair info Bibi (I was on 4 x EC, then 4 x accelerated Taxol, so every 2 weeks). Brave, I've not been prescribed Letrozole, good you start to feel better soon. Lisalou, good luck with getting the drains out tomorrow, Jx

[Bibi44]

Lisalou Glad you're a bit better. I have finally got rid of the tax trots this weekend after being housebound with the da*n things for 2 weeks (yay!). HB has really grotty cold now, so we couldn't even go anywhere, but it's such a relief ... it was so ghastly/draining. Jasmin is from www.cancerhaircare.com, which is recommended by Macmillan. She trained at Trevor Sorbie & said there is no basis for the 6 months thing. They go round trying to get oncologists to communicate this to their staff & she says she challenges them to proved a medical reason why it's 6 months & they all say "dunno, someone told me that & I've just repeated it". Def worth a chat with her, she gave me lots of advice about diet etc. x

[bravescholar]

Just wondering who else is taking letrozole other than Carole and me. I just checked the side effects and fatigue is one of them. I wonder if that's the reason I've been feeling so, so tired this week.

[JenJen]

Lisa you can get faith in nature shampoo from holland n barratt but same price on amazon ans you dont have to go out :)x

[bravescholar]

I did cold cap for two chemo sessions, Lisalouw. Hair started falling out so i decided just to cut my losses and shave it all off. Did ok... bald/beanie/chemo cap when i'm in the house and wig when i go outside (although now if i go for a walk i just put on the beanie). Glad you're feeling a bit better after the lymph node op.x

[Lisalouw]

Hello ladies , how is everyone , I feel abit better mentally today , god knows what the general did to me but I def had a big case of feeling sorry for myself , I even had a moment of weeping yest about having no hair , no boobs and being single , phew , thankfully I'm a little better today , I've still got my drain in which I'm sure could have come out as it's only draining 50 ml and no more , it's very irritating , also my shoulder and armpit now hurts from the clearance so I'm back on the strong painkillers .
Did everyone do cold cap or are done of you total blaldies like me , hi bibi , where is the hair lady from you got advice and where do you get that shampoo from , yipee for hair dye after 6 wks , 3 yrs ago they said 6 mths , which was horrible when your grey , I ended up still wearing hats and being self conscious about it , you can hide the no boobs but the hair thing is a different matter , I'm at the wound clinic tom morning so good riddance to the drain , yipee , love to everyone xxx

[carolec]

Lisajane hope you have a great time in Portugal xxx

[Bibi44]

LisaJ have a great break & all the best for 9/2.

JHBee I can't remember what chemo you were on, but mine stopped shedding 3 weeks ago, about 7-8 weeks after FEC/EC. I didn't lose any on Paclitaxel. x

[bravescholar]

Lisajane, enjoy those few days away and good luck with the surgery.

[bravescholar]

Half an inch, Tania! Go you. I had last chemo on 25 November and my hair has grown around a quarter of an inch... it's all rather uneven though and i look a bit like a piebald pony in black and white! My sons love rubbing it! Take care all.x

[jhbee]

Mmm, lots of nice sounding hair products to try - Lush, Aloe Vera, Rosemary etc!

I've got some full on stuff for the GP to clear the scalp but will definitely go for the milder stuff/ massage once this has cleared - something to look forward to, as is being able to colour it again!

Also has everyone's hair completely stopped shedding with new growth coming through? Maybe because of cold capping the hair just keeps to keep on shedding - I am so bored of seeing it everywhere - should have been brave enough to clipper it all off I think!

Hope you all have a relaxing weekend,

Jxx

[Bibi44]

Tania well done on completing your rads & sorry you are not feeling too great.  I'm sure it will take everyone a while to feel ok.  Lisalou hope you're a bit better too. JHBee just had a long conversation with Jasmin at cancer hair care.  What a lovely woman! She recommends rosemary shampoo from faith in nature, massaging your head to stimulate blood flow/growth & putting olive oil on your dry patches, then a hot steaming flannel & gradually trying to flake bits off it.  She also said they have a specialist cancer hair salon & can do colour after 6-8 weeks (yay!) & that it's a fallacy you need to wait 6 months.  She told me that your follicles collapse after chemo because they no longer have hair in them, so when new hair grows it grows curly because the follicle takes a while to straighten itself again.  Very interesting. Get massaging girls. She also diet is very important & can make a diff to how fast it grows. Have a nice weekend all. xxx

[lisajane7878]

Hi everyone haven't posted for ages but still read up from time to time. Bibi my hair is really strange looking now. I have one side which is thin but still looks normal ish. The back and other side have almost all gone. Still have a long fringe. My scalp is all covered with thick dark hair now though. I have a date for my surgery 9th February. Having three nights in Portugal next week without the kids to recharge before surgery. Was my amazing mummy who suggested that so she's having kids. Not quite sure what I will do about the hair situation! Prob a mix of wig and sun hat!! I can't wait to not have the constant thought of what I'm doing about hair!! Very vain I know!!! Big love and hugs to you all xxx

[Tania786]

Hi all, I had my final Rads today and like Lisa, I've been feeling a bit down too. It's very flat feeling where I should've been feeling happy for completing the treatment.

With re. to hair growth. My hair are growing but very slowly. My last chemo was on 2nd Dec so they have grown probably half an inch. I've bought something called Roots from Lush and a soap bar.