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Starting Chemo in Nov 2011

keepthefaith
Member

Re: Starting Chemo in Nov 2011

Guys, just a quickie
I hear from Judes every now and again - she is doing OK, but still has I think 4 weeks (3 after this week) of her weekly taxols to go.

Lisa - c'mon let's see a new photo with your hair growth. Mine getting thicker every day. I haven't started tamox yet, but suspect that BS will give me a scrip at out meeting tomorrow where I get my results - hoping for no more bad news. She's got twitter, but not sure of username. Good luck with number 7!

Teresa xx

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Re: Starting Chemo in Nov 2011

Afternoon Ladies,

Hope everyone is doing well and coping.

Lulu: belated thanks for your info re reads, scans and recurrences. You really put my mind at rest.

Trudi: you're right, finishing chemo is an anti-climax. I think I was just too exhausted by it to get excited but I did feel relieved that the SE days were numbered although still have a lot of bone pain. You made me laugh with the door-knob casserole.

LL: I'm taking Letrozole (like Audreytoo and Filosophie) and I started 3 weeks after last chemo. Like you wonder how Judes and Granny Jean are doing.

My nails are growing fast and have the horizontal ridges but no discolouration. Hair is growing very slowly, mainly my hairline at the back. I didn't lose all my hair (still have stubble on head)and was forced into shaving my legs the other day as it had started growing. Grrr!

Good luck to all having rads and other treatment.

Take care all, Love, Liz, x.

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Re: Starting Chemo in Nov 2011

Hiya ladies.

LL - I have my Tamoxifen and have been told to start it when se's worn off so I will probably start it around the 26th which is when I start rads.

You will need to check about yours as I am pretty certain they will not want you starting it before surgery, there is an increased (but very small) chance of blood clots I believe, Lulu might know better so they will askyou to leave it for a while.

Am getting into the slow cooker thing now, beef in guiness tomorrow night.

I have to say other then feeling down at the end of last week,I have been extra lucky with this last chemo, only ache badly (injections I think)and no taste,but other than that, okish. I hope everyone else feeling ok and se's not too bad.

Trudi

Libralady
Member

Re: Starting Chemo in Nov 2011

Hi guys, for those of you who have done chemo - have you started your tamoxifen for those who ER+, if yes, how long after chemo ended did you start.

My surgery is after chemo, wondering if i will start it before surgery?

Oops....bad manners....hi everybody, hope everyone is good. Has anyone heard from judes? Im sure she had facebook or twitter...does anyone have her user details,just wanna see how she is? Id love to hear how our granny jean is doing aswell.

Hope the rest of our quiet ladies are all doing ok along with our chatty ones lol

Im just enjoying the last couple of days before im juiced up again with TAX for my 7th cycle.

gill13
Member

Re: Starting Chemo in Nov 2011

Lulu - i had something similar after my 1st c section, a tiny lump developed at one end of scar and it felt like a spot with a hard bit on it, it was a stitch which had been left in (not sure if it was supposed to be to be left in or not) it ended up poking out and gp pulled it out, a long blue stitch!! that was 18 yrs ago, don't think they used that method with my 2nd one 6yrs ago.
You should get a motorised chair if no one will push you, you could go wizzing around town then 🙂

Kym - my nails seem to have gone discoloured over the past few weeks and i'm over 3 weeks since last tax, so thanks for asking the question and thanks Lulu for answering

Audrey - hope your physio goes ok, mine was just a refresher of the exercises which we'd been shown after mx.

i pottered in the garden after coming home from Rads, i cleaned out little one sand pit and washed all the sand toys, swept up the leaves, half an hour and i was shattered, cup of tea time now 🙂

Lulu34
Member

Re: Starting Chemo in Nov 2011

Trudi I lolled at your doorknob casserole... I have drawer handles that look like mushrooms on my bedroom furniture.... Idea mushrooms.

I'm a slow cooker fan too.... I was soooo nervous when I first got it I stood over it to watch it slow cooking as I was worried about cooking in it.... Kinda defeated the point to keep checking on it every few minute for hours on end... But now have mega faith in it..... I just bung everything in and leave it to work it's magic.

Audrey I have been contemplating using a wheelchair at times and think it might be handy but would need somebody to push me and my family poo poo it a bit saying it will just make me lazy.... Which it wont! I just sometimes cant walk much.... My folks are usually very supportive but think a wheel chair would make me appear sicker to them and that's why they are so anti one..... I would like to get out and about more without having to sit down every few minutes. Iv not totally ruled it out but will see how manage after rads.... Good luck with physio appt.

The fingernail thing..... I know a number if people whose nails were ok during chemo but fell off afterwards and took months to recover totally..... Even though chemo has finished the nails you have will have been there during treatment and i think it takes about 9-12 months for nails to fully grow out.... I have the ridges from each chemo.... Ridge no1 from chemo 6 months ago I getting towards the top of my nails though.

Iv had 5 rads and got 15 to go but not using any cream as my unit says no..... My skin is fine though.

Kym my mum should get her letter in about two weeks if her mammos are fine.... I know what you mean if you didn't end up having the full treatment your onc recommends, you may wrack yourself with guilt..... But often they suggest more treatment than is really neccessary so if you cannot complete it you have bit of leeway..... Good luck with no 6 anyway.

Off for rads no 6 tomorrow and need to get a funny bit of my scar looked at.... Not sure if it's a hair growing in or a stitch coming out but over the last couple of days it has kinda created a bubble on the scar and it's dark underneath so think its maybe a stitch. Will let you know what they say tomorrow.

Lulu x

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Re: Starting Chemo in Nov 2011

Blimey, I can never keep up with all these posts!
Trudi, your doorknob casserole made me laugh! I'm not a good cook, but I do know the difference between a doorknob and a mushroom, haha! I know, chemo brain . . .

. Short break . . . Slash is on Top Gear . . . . Drooooool . . . . But so wish he'd take his hat and glasses off, he's got gorgeous eyes! No, I'm not in the least bit interested as to what he has to say about cars. OH saying Slash is as ugly as ever and is very pleased Slash took his wig off so he could fit his helmet on. Oh, how I laughed.
Ok, he's gone now.

Gill, you're very welcome, and yes, wouldn't it be great if we could all meet up next year somewhere in the UK to do it!!
Weme and KTF, very happy to hear you are both recovering well with no major hiccups.

Liz, I'm so sorry, I missed saying earlier 'well done' on your heart scan results! I did have a bone scan and a CT scan before I started chemo, and all was clear, thank God. But I thought they might do one midway thru chemo too, to see if I really need 8 lots, considering lump disappeared and boob returned to normal shape after chemo 2.

Lulu and Audreytoo, hope rads is going well for you both, and Audreytoo, hope The physio goes well tomorrow. Lulu, can fingernails start being tender 2 months after last having tax? I'd be interested to know, like AT. My toenails look very yellow already, despite my moisturising them plenty.

Lisa, I couldn't watch that programme coz we don't have Sky 😞 I hope you're SEs are much kinder to you this time around from Tax 2?

Lulu, I'm seeing my Onc again in 3 weeks, so I will ask her again as re having a further 2 and what if I refused. Altho now she's said I must have 8, I'll think having 6 means I've done myself no favours. (anticipated regret like Filosofie says). It's all psychological isn't it. I got quite excited on Friday coz I got my app thru to see my surgeon as re the mx, and it was for 23rd April - the same date as my last chemo. I thought, Great!!! The Onc HAS reduced my chemo. But when I rang to tell them, it had been a mistake on the secretary's part :-(. Now seeing Surgeon on 8th May instead. Did your mums annual mammogram go ok? Whe will she get the results?

I'm sorry if I missed anybody out, I'm rubbish at keeping up, but I hope everybody is well. Paula and Jude's have been very quiet.
Chemo 6 tomorrow. can't wait 😞
Kym xx

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Re: Starting Chemo in Nov 2011

Gill

I have had 7 rads and my skin is only just noticeably red. I was told to use E45 cream twice a day. I had already been using E45 once a day in preparation for rads, I had asked my Onc if I could do this and he agreed.

My boob (I had lumpectomy and auxillary clearance) is also a little bit sore at times, but it is my arm that is troubling me most. My arm is stiff and I am sore underneath my arm and down my side.

I have been doing some of the exercises I did before. Going to a physio class tomorrow.

It is tiring though going to the hospital everyday. Sometimes my appointments are on time and sometimes I have to wait for an hour.

Good luck for your rads this week.

A

gill13
Member

Re: Starting Chemo in Nov 2011

Liz - thank you so much for sponsoring me, i've been overwhelmed by the sponsorship i've already received just by sharing the link on my FB, I'll just say a thanks to LL and Kym, who both sponsored me through FB

hi Gail - you're not going mad lol, i did post the link, but it was removed by moderators, fund raising pages can't be posted on the public forums, its fair enough really, thats not really what they are for, i can PM anyone the link who would like to or is able to able to sponsor me

Audrey - how many rads have you had? i've only had 2 and no signs of redness yet, i was given Diprobase by the hospital and have been applying twice a day, i saw the physio on friday, it was very useful an di've been good ovewr the weekend doing my excerises

hope all are keeping well xx

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Re: Starting Chemo in Nov 2011

Troodles - loved your slow cooker tale. I have been using a slow cooker for years and they do make lovely meals.

Hope everyone is having a good weekend. I went out for the day yesterday, but I did need a wheelchair to get out and about. I still can't walk very far and am still exhausted but I am managing to do little bits about the house now.

My skin is starting to go a little bit red now after the rads. Has been a little bit sore but my arm is getting very stiff and sore. Seeing physio tomorrow.

Noticed this morning that my fingernails are starting to get a bit sore/tender. I only had tax once and that was at the beginning of Jan I hope side effects from that aren't kicking in now I would have thought it was too late now?

Hope everyone gets on ok with whatever treatment they are having this week.

Love
A xx

Libralady
Member

Re: Starting Chemo in Nov 2011

Hey Gill,

Yes, I actually really did enjoy it, emotional at parts but overall a good drama.

Perhaps tape it and watch it when you are stronger, it was a positive drama overall, honestly.

Teresa - I have about the same hair growth as you, must change my profile pic too.

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Re: Starting Chemo in Nov 2011

Gill - Am I going nuts? I was sure you had posted a link to your sponsor form but I can't find it now. Did it get removed or did I just imagine it?

Trudi - Your story was just what I needed to cheer me up. I've been finding it really hard to eat anything last few days. Not having ulcers but have had almost no appetite, so have only been able to face more than a few bites of my dinner at night. This has been the first day in over a week I've felt like eating much and your meal sounded so tempting till I got to the doorknob bit.

Lisa - Was Five worth watching? I checked out the trailer on the Sky Living website, but blubbed so much I couldn't face the whole film, which isn't normally like me at all.

Teresa - Love the new pic. I've got about 1cm of hair too, but it's a bit too sparse to show up as well as that in a photo. Hoping it will come through better once I've finished chemo. Can't complain too much as I feel lucky it's coming through at all yet. Glad you're healing OK now. Hope you have good news on Tuesday.

gill13
Member

Re: Starting Chemo in Nov 2011

yum yum chicken and doorknob casserole, lol, i love my slow cooker too, best not to use it when you are in all day though, the smell of your evening meal cooking at lunch time can make your sandwich seem a bit boring.
my little one loves a slow cooker meal, doesn't matter what it is

hope everyone is having a good weekend

Gill x

Libralady
Member

Re: Starting Chemo in Nov 2011

Loooool trudi.....i can imagine the doorknob as we have a little wooden door knob on one of our cupboards and it does look just like a button mushroom. Hilarious chicken & door knob casserole!

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Re: Starting Chemo in Nov 2011

Hi ladies, thought I would share my latest chemo brain blunder so we can all have a bit of a giggle, I think some of us could do with it, I know I could, felt really depresssed the last two days, what an anti climax the end of chemo is!

After last one on Monday I decided to go shopping to treat myself and one of the things I bought was a slow cooker as always wanted one. Tuesday morning I went shopping for the week as I knew I wouldn't feel like cooking so at least OH has food in ready. Slow cooker went on Wednesday morning, chicken, carrots, onions, mushrooms and sauce. Smelt loveley all day and OH was rather impressed. Whilst serving it up my son came through to me and he was unable to stop laughing.

A while ago our door knob came off the larder door and it has been sitting on the side ever since. It looks remarkedly like a MUSHROOM! So yes, we had had slow cooked chicken and door knob for dinner!.

Suffice to say my whole local community now knows this story.

Trudi

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Re: Starting Chemo in Nov 2011

Filosophie

Please don't beat yourself up about not continuing with the Tax. I had 3 FECand was supposed to have 3 TAX, but after my 1st TAX I ended up in hospital for nearly a week and I had a reaction to it on my hands. My ONC wouldn't give me any more TAX as he said my reaction to it could be worse next time and he put me back on FEC. So after the next FEC I ended up in hospital again. My ONC then wouldn't give me anymore chemo - so I only had 5 doses instead of 6. I understand how you feel because I was disappointed about all this at first, but he listened to me and I understood his explanations. They are only doing their best for us and we have to trust that they know best. I must admit that I have great faith in my ONC that he knows what is the best treatment for me.

Sorry if I have waffled a bit.

Go easy on yourself and take care.

A

filosofie
Member

Re: Starting Chemo in Nov 2011

Thanks Lulu and Teresa

My consultation didn't help because I saw the new registrar (that time of year) and after I'd run through my experience to date he went off to consult with the consultant on e.g. Reducing the dose. We both knew the consultant doesn't like reducing doses. So when he came back and said we were going ahead with the next one I thought he meant the tax. We then talked at cross purposes for some time. Still as you say I've had two doses. Also, at the beginning I was quoting the results of the TACT trial and questioning whether tax really adds anything to E-CMF, so hoist by my own petard.

I know it's just what we psychologists call 'anticipated regret': if I get recurrence or secondaries will I regret not insisting on that 3rd dose. Makes us do and not do all sorts of things. However the decision is made and there's no point dwelling on it any more than possible behavioural causes.

Thanks for the offer Lulu. Can't remember which one crosses the blood/brain barrier, but definitely felt woozy after that. I had a pretty easy time on epirubicin so hope I can put the dark days of docetaxal behind me soon. Good luck to all those still taxing and I hope everything goes smoothly.

keepthefaith
Member

Re: Starting Chemo in Nov 2011

aaah!!! I see.. Of course 😉

filosofie
Member

Re: Starting Chemo in Nov 2011

Forgot to say on Letrozole. I was on it, albeit only for 4 months before Mx. Didn't really notice any side effects except possibly joint pain, but that really started a week after finishing it. I was well past menopause (and HRT...) at Dx but I do think that some of the SEs are just SEs of menopause. I certainly didn't notice any hair thinning but I think this is something that is mentioned as it is a sign of menopause. It would be nothing like chemo hair loss even if you do experience it. Hope I don't have to eat my words; I'll be back on Letrozole after chemo!

Lulu34
Member

Re: Starting Chemo in Nov 2011

KTF a PS is a plastic surgeon

keepthefaith
Member

Re: Starting Chemo in Nov 2011

Hey Sofie don't worry you aren't the only one, I thought the same as I was supposed to have 6 TAC and only managed to have 3, then had FEC instead for the last 3 - felt like a total failure! Hope I am not being thick but what or who is a PS ? I am sure if the onc thought it was best for you to carry on with the Tac, he would have persuaded you or maybe done it at a lower dose. One thing which we are learning on here, is all onc seem to do things slightly differently, and also we all have different diagnoses and pathology so I suppose on the surface while it seems the same, it probably isn't! Good luck with the CMF.
Tx

Lulu34
Member

Re: Starting Chemo in Nov 2011

Sofie I had cmf the last time.... I had epi-cmf. So I had four lots of epirubicin (the E in fec) and then 4 of cmf... My regime was different to yours and I had the full dose every three weeks rather than the day 1 and day 8 regime..... I didn't like the cyclophosphamide which gave me shooting pains in my face when it was administered.... Felt a bit nauseated and naff for the time I was on it... But not as bad as I have found the taxotere and carboplatin this time around.... Although maybe I'm just looking through my rose tinted specs as it was over two years ago that I had it.

If you have any questions about it though do ask and I'll see if I can wrack the corners of my chemofied brain for answers.

Don't feel bad about not continuing with tax you have had two and some people don't manage any... They wanted to reduce mine after I'd had three but I wanted to persevere with all six at full strength after id jiggled my meds but my onc made a really valid point.... If you are getting really bad side effects then it means you are getting too much of the drug for you... The SEs should be within a certain range and if you are suffering too much then you are getting too much.

Love lulu

filosofie
Member

Re: Starting Chemo in Nov 2011

Well I'm now officially a wimp. Missed my 3rd tax last Friday as I was still in hospital and when I saw the Onc on Wednesday he told me they'd decided to miss the 3rd tax and go straight onto the 1st dose of CMF. He told me that they were most concerned about further delays to my treatment, but did say that the main reason for this was the severe SEs I'd experienced and they were also worried about how much the tax was weakening me. Swear he wrote 'light-weight, can't hack it' in my notes. I know lots of you had to manage far more esp Lulu, and Paula managed all 3 despite feeling worse than I did I think. So I had 1st dose of CMF today another in a week then 3 weeks off. Nobody else seems to have had CMF here but I'd be happy to hear about any experiences. The C and F are the same as FEC but difficult to separate out the dreaded epirubicin.

Sympathy to those who have had or about to have Mx. My BS would have been happy for me to go home with a drain but PS is a stickler for these things and I ended up being in for a week. Still I thanked him in the end because I've never had any problem with it (tissue expander is another story). Good luck with the path results, I hope everything is as predicted or better. Tip from another PS is that if you have an ALNC the important thing is to keep massaging the scar, cream doesn't matter nearly as much as the friction apparently.

At least I'll be able to join in the Rads discussion. Sounds like things are going pretty well for most people in that regard. So onward and upward for the November gang.

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Re: Starting Chemo in Nov 2011

Hello All

Troodles-well done on finishing chemo

Lulu - Hope your Mum's mammo went ok. We are about the same on rads. I am7 down now. Hvae you had any side effects from the rads? I have noticed that my skin is starting to go slightly pink. I have also had the odd twinge. My arm however is getting stiffer but I am trying to do some exercises and I am going to a physio class on Monday berfore I have rads.

Gingerlizzy - Well done of finishing chemo. I started Letrozole and calcium tablets on 1st March. Will be having Dexa scan next month. My hair is starting to grow again so hope the Letrozole doesn't affect it.

Werne - Pleased to hear you are recovering well.

Gill - I agree it does feel strange to be lying under the rads machine. I was told to use E45 cream but the hospital didn't suppy me with any ( but I have been using it for a while now on my operation scars). That must have been stressful for you with the car, just what you didn't need.

Butterfly - I take my Letrozole tablets in the morning when I wake up and before I have breakfast. I find this the easiest as I used to take my HRT in the morning. I wasn't told how often I would have a Dexa scan, but I have an appointment for one next month. I have been sent a four page health questionnaire to fill in an take with me to my appointment.

KTF - Pleased to hear you are feeling better after your wound has been drained. Try and get plenty of rest for your exhaustion.

Fairy - I was interested to hear how your counselling went. I just don't think it is for me though. I just talk everything over with my hubby. Hope you are ok.

Hope everyone else is ok and not suffering too much.

Love
Axx

Lulu34
Member

Re: Starting Chemo in Nov 2011

Theresa glad your feeling better after your draining.

Those of you having mx and no rads this is routine.... Until a few years ago nobody got rads after mx only after wle..... Wle plus rads is equivalent to mastectomy in terms of recurrence and survival.... They now do rads post mx only for those go have a higher risk of recurrence because the tumour was close to the chest wall or skin or in the margins.... So if you don't get them then it's actually better news than those who need them.... Occassionally they will do rads to the auxilla after an mx which isn't the same as post mx rads this is typically done instead of a nod clearance.

For those concerned about secondaries.... Having a scan won't prevent secondaries and knowing you have them wont prolong your life or improve the quality of your life so they will only do scans if you have symptoms.... Scans are expensive and their purpose is as diagnostic tools not for screening. Most people do not get recurrence or secondaries but it can be hard to get your head around it and trust your body again.

If you notice any changes that don't disappear within a couple of weeks get it checked out.

Now a week of rads down only 3 weeks to go.

Lulu xxxx

keepthefaith
Member

Re: Starting Chemo in Nov 2011

Thanks Gill, if no-one locally does it then I will sponsor you, please PM me with the link otherwise I will forget!

Feeling much better since getting the wound drained - 120ml, quite a lot as I am only little, the BCN said that the max she had ever got was 770ml! She was very proud of it, her record! It feels much easier now andnot so painful, I think it was stretching the scar tightly. She also took the dressing off, and it has healed really well, doesn't look too horrendous - another dose of the new normality!!!

On the plus side my hair is growing at a rate of knots, I reckon it's about a cm long, and even though it is not back to normal (normal being short and spiky), I don't look so much like a cancer patient, just the GI look! I will get a photo up soon.

Results from the surgery next Tuesday - trying hard not to worry about it, had the really bad news in September, so this will just be fine-tweaking of the analysis!

How did you get on with the draining, Weme? Kym, I know what you mean about counselling, I will give it a try but not sure how it will help! It's not like I keep everything to myself! Hope to be well enough to see Best Exotic Marigold myself next week, so many of you have said it is good. Sorry to all those I've left out - so many people!!

Love to all

Teresa x

gill13
Member

Re: Starting Chemo in Nov 2011

hi teresa - glad to hear you doing ok, even if recovery is a bit slow for you, at least you heading in the right direction

Liz - thank you for your offer to sponsor me for the Race for Life, i have already raised £130, and still have until may, so i'm really pleased with that, PM me if you would like the link.

I know a lot a people do this race all over the country, and most people will know someone doing it but if you don't and would like to support the cause, I would be more than happy for the sponsorship

Gill x

keepthefaith
Member

Re: Starting Chemo in Nov 2011

Hi all

Thanks for the best wishes - Weme is making a much quicker recovery than me, she is made of strong stuff!! I am OK but just still totally exhausted. Off back up for my second draining of fluid today - looks like I am growing a second boob!

Lulu, yes i am having same regime for rads as Weme - it just seems to be something they do here. I am happy as it means more recovery times in between zappings. I have asked all my friends to look at their diaries and book in to give me lifts - it's only 13 sessions in total.

Must dash now as off to hospital sorry to be brief.

Love to all
Teresa xx

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Re: Starting Chemo in Nov 2011

Hi All,

Thanks for all good wishes on my heart scan results. Hope weme and ktf continue to go from strength to strength.

Trudi: congratulations on last chemo - hope all SE will be minimal.

Lulu: hope rads are going well and your Mum's mammogram was OK.

Lizzy: Know what you mean about rads, I'm not having them either - suppose the oncs know best. My sons asked me about all clear so asked onc nurse and she said they don't do scans but as I will be seen by surgical and oncs for 10 years they tend to stop worrying after 10 years!

Audreytoo: Starting Letrozole tomorrow so we can compare notes. I don't have calcium tablets but have to have DEXA scans every year.

Fairy: feel the same as you regards feeling ill all the time although have felt much better this week. I, too, am concerned about not having scans as having read on here that some of those have had mets without any symptoms so if we don't have scans how would we know if we had mets? Good to know you have managed to be creative, can't wait to be able to read a good book! As for the psychiatrist: sometimes your friends are better. Today I had a long conversation with the man on the next chair to me who has bone mets. It was therapeutic to have an honest conversation about how cancer has affected us with someone I will probably never see again.

Gill: Congratulations on even thinking about the 5K never mind taking part - post a link and I will sponsor you. I had a reloading dose of Herceptin today so was supposed to be there for 6 hours but they let me out an hour after it finished and another hour later I started to shiver so took a paracetamol but was still cold until after dinner - ok now. I have felt a change in what I want to eat and getting back to my diet pre-chemo: ditched the junk food and chocolate and back to fruit and my 5-a-day this week although my weight has stayed stable.

If I have missed anyone out I apologise. Off to bed now as have been awake since before 6.

Take care all, love, Liz, xx.

gill13
Member

Re: Starting Chemo in Nov 2011

evening ladies

well thats my 1st Rads done, and also had herceptin only, which was great, half an hour and a quick flush, was at the hospital for less than 2 hours, compared to the usual 6 ish hours.

Rads was ok, it just felt strange to be lying under another strange machine, i haven't got any pain, but i can feel the area which has been zapped, its strange and not really sure how to descibe it. The hospital has given me some diprobase cream for the area. Tomorrow i'm got a physio session before rads, just to make sure arm movement is ok.

when i was having the herceptin, i mentioned that my hand will still getting pins and needles, Nurse said it was lucky i'd had my last chemo as if i hadn't they prob wouldn't have given me anymore..

Kym - i totally agree with you that you should not plan how you would handle something that may never happen. i don't think you can plan how you're going to react to something
my hair was ok till the end, no obvious patches anywhere (well not that i could see anyway) the dreaded CC did its work well for me

Weme - glad to hear you're doing well after your mx, its strange how things differ from unit to unit, and another example your rads over 5 weeks

Liz - good news about you heart scan, wasn't it great just having herceptin by itself, i won't be starting tamoxifen for another 3 weeks

Lulu - hope you doing ok, how are the Rads going for you?

Forgot to say what a hassle i had going to hospital, my friend and neighbour came with me, i stopped for diesel, and needed air in 1 tyre, got the diesel, started putting air in the tyre when the valve snapped off!!! Hissss all the air came out of the tyre, we had to phone friends hubby, who was working locally, my spare tyre was pretty much illegal so ended up using his car and leaving him with my car to sort out, got to the hospital on the dot of appointment time, phew!!! i owe him some beer i think

Lulu34
Member

Re: Starting Chemo in Nov 2011

Linda I had those horrid little cuts in my nose I get them quite a bit even though I take acuclovir for cold sores.... Never got any actual cold sores just the scabby nose ones..... And have a scabby crusty bits across the septum.... But i find that Vaseline does help but laughing or blowing my nose makes them open..... So your cold probably is making it all the worse.

Gingerlizzie I get streaming eyes.... It's actually cause by or causes dry eyes...... Mine started doing it during chemo the last time and tbh they never got better..... I had hypromellose eye drops and thought this would help after I finished chemo but still needed the eye drops and been on them ever since..... They do help take the sting out and make them move more freely as they can get a bit sticky...... Iv tried quite a few and they are all ok but some are thicker but I prefer the hypromellose or Carmellose the others are lumecare and lacrilube.

As for the hair loss it's not a common side effect of hormones but can happen and usually won't make you lose all your hair but can cause a bit of thinning occassionally.

Kym can you not ask about a second option for the 8 chemos? The evidence says you actually only need4 and that's why they give six.... Yes 8 is probably a good idea if your not having a great response or have a very big tumour which is shrinking slowly but if you had a good response from the first few I don't see why they insist on 8 unless it just local policy..... You could ask what would they do if you refused the last two (you are allowed to refuse any treatment if you want to) and how would that affect your prognosis and see what your onc says.... Sometimes it's good to get hold of any articles he has to back up his policy to do NAC with 8 chemos..... Sorry the counselling didn't work for you but If you feel naff only because of the SEs then you just have to remember its not permanent and "this too will pass".

Weme glad your recovering well... Good luck getting the drain out....
Iv not heard of alternate day rads is that something new? Keeping my fingers crossed for good results next week.

Iv had 4 rads so far.... All going well. Still sore and weak and tired from chemo but not much new happening in lululand.

Love and hugs
Lxxxx

weme
Member

Re: Starting Chemo in Nov 2011

Hi All

I am doing well after my MX and ANC, I have booked to go have it drained tomorrow as I seem to be turning into a water bed and it's getting a bit tight around the wound now, I'm a bit worried as they said when I go back they will remove the plaster but hopefully that will be OK. I have an appointment with the surgeon next week to get path results.

Gingerrizzie you can get drops for your eyes if they are running, apparently it is because they are dry! the drops do help but you wouldn't have thought they were dry the way they run all over the place!

I will be having rads starting probably end of March if I heal ok, I will be having them every other day over 5 weeks, I would have prefered to have them over 3 weeks and get it over and done with but this is what the onc is recommending so I guess we have to hope they know what they are talking about.

Liz, fantastic news about your scan, glad it's all OK.

Hope everyone else is doing OK.

Weme

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Re: Starting Chemo in Nov 2011

Hello Ladies,
Well, the counselling went ok, altho she told me she was more of a psychiatrist than a counsellor, as counsellors just sit and let you do all the talking, but she would also offer advice, etc. To be honest, I didn't really feel it benefited me because I had the same discussion as I have with my friends, when I'm having a good day (which I was yesterday). At the end, she told me that I was very realistic/positive, which I am, I know that. It's only when I'm in the midst of those horrid SEs a few days after chemo that I feel very down (as is the norm if you're poorly sick - regardless of the cause). The only thing that would make me feel better is if someone told me that the cancer has been dealt with, and I'll never ever ever get it again. But nobody has a crystal ball, and no-one can ever tell you that. Ildiki (that was her name) said that it may help me to think what I WOULD do should that ever happen. I said, hmm, I suppose so. But privately, I thought, 'not bloody likely! I'll cross that bridge IF I ever came to it, thank you very much!! Life is too short to think about what ifs - I could get run over by a bus tomorrow, and what a waste it will have been spending time stressing about what MIGHT happen sometime in the future! I might see her again when I'm having my mx - coz I've not thought too much about that. Maybe it's sticking my head in the sand, I don't know. But I need to get this darned chemo over with first! Another 3 to go (yes, I know I keep harping on about it, lol).
I'm not fretting about the mx (yet!!) coz I know I have to have it, so there's no point worrying about it right now. Plus, as to the op itself, lots of other ladies have said its nothing compared to the nasty SEs of chemo, and, I know that the pain will be less tomorrow than it was today (well, hopefully!)
My next chemo is on Monday, and I'm really not looking forward to it, but this time, I'll not take 2 Syndol before I go! It was a big mistake last time, and I spent 5 hours nodding on and off with a that horrid cold cap on, dripping wet down my neck, weighing a ton. I just wanted to lie down on a bed. Has everyone else now had their last chemos? Do you know, L4W? I know Jude's was having them weekly, not sure when she finishes, and Lisa, what about you? Weren't you having 8 too?
Lulu, I hope your rads is going ok? I'm sorry, it's so hard to keep up with everyone - who else is now due for rads?
And Weme and KTF, I hope you are bothe recovering well after surgery!
Gill, well done for doing the Race for Life! But make sure you take your time! I'd love to take part too, but will be having my mx about then. My daughter and I did a Midnight Walk last year for our local hospice, and it was great fun, tho I didn't practice as much as I should have, and got a couple of nasty blisters, lol. And how is your hair, now you've finished chemo? Did you get away with not having the bald patch on top? I actually went to see the psychiatrist yesterday wearing nothing on my head, and just had a side parting (ish - my hairs curly, and is a very messy), and you couldn't tell. So that's good. But coz I have another THREE (just in case you didn't know, lol) I'm not sure how much damage that nasty Tax will do! And I fear they will put paid to my eyebrows and lashes which are just about hanging in there.
Gingerizzie, So sorry to hear your MX is causing you gip. How long ago was it when you had it done? 😞 and those dripping eyes sound a right pain. I wish I knew what to suggest.
Linda, those cold sores up your nose sound really painful. Again, I have no answers, but have you been to a pharmacist or asked your BCN what you could use? It won't help that you've got a rotten cold so will have to keep blowing it 😞
I'm fed up with falling asleep every night at about 8pm, like an old dear, no matter how hard I try and stay awake. This fatigue is awful. I only had insomnia for about 3 days after my first chemo. I'm off to see The Best Exotic Marigold Hotel tonight, so my friend might have to keep giving me a dig in the ribs every now and then. Mind you, saw Woman In Black at the weekend, and manged to stay awake for that. It was great, really creepy!
Sorry about the length of this post. Thought I'd best make the most of it before that chemo truck hits me again next week.
Kym xx

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Re: Starting Chemo in Nov 2011

Hi all November ladies.
i haven't posted for ages but have been reading your comments whilst mopping my eyes. I too have finished my chemo and am starting letrozole next week. The tax hit me harder than the fec, the worst thing being the watering eyes which are dripping all over the keyboard as I write this. How long will it last? I am nervous about starting the letrozole as one of the side effects can be thinning of or hair loss and I just want mine back, fed up with looking like an egg. I know we shouldn't complain if these various tortures inflicted upon us are keeping us alive, but I can't believe I will ever look attractive again, and am feeling sorry for myself. My MX and reconstruction hurts like hell too feels like I am in the grips of a boa constrictor. Thats it moaning over, I know some of you have had much worse SE,s than me and have coped brilliantly. Well done and keep posting!
love Gingerrizzie

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Re: Starting Chemo in Nov 2011

Good Afternoon ladies

I am slowly but surely getting back to myself, I think I am about post 12 days after last tax. Still have a stinking cold which doesnt want to go. Has anyone ever had like cold sores up their nose, is there anything you can take for it... its so painful...

I too am an I T lady so have been working through most of my treatments to date only because I can work from home and my company have been great, if I can work brill, if I cant then I dont..

I am starting to think the sunny weather might be with us again, its been looking quite hopeful here for the last couple of days.

I went for my pre-admission appointment yesterday and am all set for 21st March for the Lumpectomy and ANC, they say it should be a day case. Im due to start the tamoxifen next week so i will see if that has any impact on me.. Ill be missing my next Herceptin appointment as the ONC said to get surgery out of the way first then start again which is a bit of a pain as it means I will be there for the 5 hours just incase I have a reaction...

Kym, how was the counselling , I was considering going to it at the Haven but not sure how I would feel..

Lulu , hope the rads are going okay. Are you feeling tired ? Hope all goes well with your mums mammo tomorrow 🙂

Lisa, thanks for the reminder, I remember seeing something about it but forgot its on tonight.

Gill, well done aiming to do the race for life. I am thinking of doing a sponsored bike ride but not til May. Hopefully my fitness will be in a better place then.

Well the children are due home any minute so its about to get chaotic in the house.

Have a lovely evening

Linda
x

Lulu34
Member

Re: Starting Chemo in Nov 2011

Just popping into say hiya and ope our all getting on ok.

Liz great news on your heart scan thats fab... Hope herceptin oes ok tomorrow

Gill good luck with the race for life I can' hardly contemplate walking 5 meters let alone 5 k at the mo...

Kym hope our counselling went ok..... Iv had counselling at various points and find it really helpful.... But then I do like talking... Anyway it did help me get my thoughts processed.

I have rads no 4 tomorrow and mums got her annual Mammo she's now seven years post diagnosis.

Gill iv been on tamox off and on for 6 years and I wouldn't say it causes weight gain but it did make it a bit more difficult to lose weight in my experience. I restarted my tamox yesterday after getting my line out.

That was a bit of an experience as it bled for longer than it should have done.... It was meant to take 15 mins to get the line out and 15 mins to stop the bleeding but after 30 mins it still hadn't stopped and ended up taking almost an hour before it stopped bleeding but it's absolutely fine now.

Love and hugs
Lulu x

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Re: Starting Chemo in Nov 2011

Evening Ladies,

This is just a quick update as will post more tomorrow.

I had my MUGA heart scan result today and it is 79 - was 80 in October so I am delighted. Can't believe my body is functioning so well after, as my onc nurse said, "taking a battering with really powerful drugs." We all have so be proud you have survived it.

No chemo tomorrow but a 'reload' of Herceptin and pick up letrozole (Femara) pills - the post-menopausal equivalent of Tamoxifen.

Hope you are all doing well and take care, love, Liz, xx

Libralady
Member

Re: Starting Chemo in Nov 2011

Hi All

Hope everyone is doing OK. Im up one minute and down the next....like all of us I guess. But Im up today :-))

Just letting you know about a programme on Sky Living tomorrow night (Thursday) called "Five".

Its on Sky Living HD at 9pm (channel 107);
Its on Sky Living +1 at 10pm (channel 123)

It is five short films exploring the impact of Breast Cancer on peoples lives (directed by Demi Moore & Jennifer Aniston) especially being shown as its international womens day.

Apparently its a tear jerker so have the tissues at the ready.

Heres a link, the trailer wasn't working earlier but it may work for you

http://skyliving.sky.com/international-womens-day/five-promo?DCMP=Sky+Living-search-sslc

gill13
Member

Re: Starting Chemo in Nov 2011

Kym - hope the counselling session goes ok, i have a vision of you whispering to a counsellor, and your mum with her ear against the door! lol

i have set up a just giving donation page for when i do the Race for Life, and i'm really pleased that i've already got £80 sponsorship, my older daughter is doing it too, she did her justgiving page yesterday and i think shes got about £40. And thats just through facebook.

Gill x

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Re: Starting Chemo in Nov 2011

Hi Gill, Yes, you're probably right as re the counselling. I'll go tomorrow anyway, and see how it goes. Its just that I had a counsellor years ago when I got post natal depression after I had my daughter, and to be honest, I thought it was a waste of time, and I only told him what it was I thought he wanted to hear. Hence I only had about 3 sessions, coz he thought I was perfectly fine! (it didn't help that I had those sessions at home, usually when my mum was here. I always had visions of her with a glass to the kitchen wall, while I was next door in the living room, trying to hear what I was saying, coz she's mega nosy!! I don't confide in her really coz it'd be all around Kendal in no time!)
And yes, GG, how fab your friend won lots of money on the lottery!!! I did it for about 10 years, and got fed up, coz I won nothing. Then my best friend was on telly 2 years ago when she and 10 workmates won 4 million between them! So, I've resumed doing it again ever since, and won about £30. Still, gotta be in it, to win it - (she sez thru gritted teeth), lol.
xx

gill13
Member

Re: Starting Chemo in Nov 2011

hi Kym, i wouldn't worry about whether your onc thinks you can't cope, thats prob not what she's thinking at all, but take advantage of the fact that you now have an appointment, you never know, you might get something out of it. I do understand why you're reluctant though, My team leader has told me about a counselling service which i can access through work, but i kind of feel i have enough people to talk to.

Diane - your lucky friend! a little bit of luck like that would be nice.
Tamoxifen - i've got a feeling that se's on that could be...hate to say it...weight gain!!!! No!!!! why is it always weight gain? Also hot flushes

i wonder if L4W still has the spreadsheet and has everyones progress on?

Trudi - well done on last chemo 🙂

hope those having rads or chemo this week are doing ok xx

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Re: Starting Chemo in Nov 2011

Like I said before, I'm amazed so many of you have been able to carry on working through all this!
I'm off to see a physologist/counsellor tomorrow. I'm not really relishing it at all and feel a bit of a fraud. When I saw my Onc last week, I was still coming out of my 'feeling grotty' phase. (The Oncs normally only tend to see you in week 3, when you're in your good week, but I see saw her a week earlier due to her being away this week). Hence, I was still in my 'burst into tears at the drop of a hat' mood. Which I duly did when I was complaining about my side effects (i.e. the bone pain and me feeling that someone was jumping up and down on my bones and they it felt like my knee caps were being twisted). She said she would give me more steroids to counteract that this next time (not sure about that at all, I'm already on double dose compared to EC - and won't they make me put on even more weight?) and that it may help me to talk to someone. To be quite honest, I don't really want to talk to anyone at all, because I find being on here kind of sorts me out. I only got a bit upset coz I still hadn't recovered properly from the last lot of Taz!
Ho hum. Hope she hasn't got me down as someone who can't cope! 😞
Noticed one of my big toes was looking a bit bruised this morning, then realised it's the dreaded tax SE. Oh b****r!
Hope everyone who's recovering from chemo is not suffering, and best of luck to others who are having it this week. Also, hope those who have started rads are coping well.
Kym xx

gooseberrygirl
Member

Re: Starting Chemo in Nov 2011

Hi There All,

Havnt posted for a bit, seems everyone is at different stages now some with Mastectomys after Chemo some Having Rad's some not, some with Tamoxofen some not, so confusing and hard to keep up, Well good luck to us All, Amazing how shattered this makes you feel mentally and physically, I work as a chef and find it tough going,
Made lunch, Place with prawn sauce.... split shift today, back at 6.30 for the evening session, Chicken and Spinach pancakes with Parmesan .. and its a killer work for the Gentry and they unbeleivably can not put something in the oven then take it out 30 mins later, even if everything else is done...... So cue me with aching joints, sore feet and nails , streaming eyes and hot and cold flushes Grrrrr!!! Rant Rant...
A good friend won £33,000 on the Lottery this weekend, Oh but to dream, I am so glad for them but wouldnt it be nice to have such luck!!
Anyway best get out of bed and back to the grind, Start Rads next monday and they say that makes you tired too, Tamoxofen No idea what se's that has, Just got to keep going.
Love to you All Ladies hope all the Se's are little ones,

Diane xxxx

Lizzy1977
Member

Re: Starting Chemo in Nov 2011

Trudi, congrats for finishing chemo, yay 🙂 I hope the SEs are not too bad.

I work in an office which and sit on my backside all day which has helped. I have had a week and a half off with each chemo cycle and have always left on time rather than doing the late hours I used to do. My firm have also been good and taken most of my workload off me and are easing me back into it.

Right speaking of work it's time for me to go home!

take care everyone
Lizzyxx

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Re: Starting Chemo in Nov 2011

I did try to post yesterday but crashed on me. Last chemo done and dusted, am chuffed as each one really taking it our of me towards the end. I know I have the se's to come but I think knowing I have finished will hopefuuly make them more tolerable!

I have been working too, after FEC I did part time week 2 and full time week 3. Tax hit me a lot harder and getting bugs after each one didn't help. I have been in week 3 but decided I am going to chill this time ready for rads on the 26th. My business partner seems to be coping well without me so I will let him carry on. lol

I also start the Tamoxifen about the same time as the rads, I have started the evening primrose oil which my onc said can help with hot flushes and any small se's on the Tam.

Hope everyone else is getting on ok, those that have had their mx's are feeling a bit better and hugs to everyone.

Trudi

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Re: Starting Chemo in Nov 2011

Lizzy - You're doing well working full time. I'm in the office full time on my good week, but I go in early so I can leave before 4pm to beat the traffic. I don't think I'd last until 5pm.

AmysMum - I work in IT too. It's really handy being able to work from home some of the time. Hope the mouth ulcers clear up soon so you can enjoy OHs cooking again.

Kym - I know what you mean about the novelty wearing off. I feel I should be seeing the light at the end of the tunnel with one more chemo to go, but I think I just see the next tunnel coming up just now.

Gill - I think even walking the 5K will be quite an achievement. Make the most of not having chemo this week and good luck with the start of rads. I guess it makes sense that your appetite will go back to something more normal now.

gill13
Member

Re: Starting Chemo in Nov 2011

evening Ladies, sorry i'm not posting often at the moment, i don't seem to have much get up and go to do anything much at the moment, i also admire those who have been still working, even if it is from home (Amysmum, wasn't it)
good to hear Teresa and Weme doing ok following their Mx's

i've been interested to read posts about Rads, i have my 1st on thurs, it feels a bit strange not having to be having chemo this week, I don't know if this is anything to do with finishing chemo or not but i haven't been eating as much as i was, i'm actually feeling full. I'm really happy about this, and hope it continues, maybe by the time i go back to work mid april my work trousers will fit again!

Our school did World Book Day on friday as Thurs was St Davids day, my daughter went as The Cat in The Hat, she looked great, and it was good to have the time to put together a costume for her

I am going to be doing Race for Life in May, i have done it once before, but this year some close friends and family members are getting together to do it, i feel i need to give something back for all the support i've received, i will however, more than likely walk the whole 5k!!

Gill x

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Re: Starting Chemo in Nov 2011

Hello all
I hope you last chemo went well, Trudie and you first rads Lulu. I also hope Teresa's and Weme's recovery is still going well.

I haven't had breast scan since the MRI before my MX and that was mainly to check they hadn't missed anything on the other side. Apart from that it was the Mamogram and Ultrasound went I first went to hospital with my lump. I did have my Mx first, but they did find 5 out of 9 of the nodes they took out at the same time were affected. I had a CT and Bone scan to check for secondaries, but one was after the first chemo and the other 3 days after the second, as that was when the equipment was available. The CT scan would have been easier if I hadn't been suffering from Phlebitis from my new PICC Line in my left arm and a spot of Lymphobema in my right as a Chemo side-effect. Putting my arms over my head just wasn't happening that day, however much the nice man (and he was very nice) asked!

I am one of the people who has worked throughout (weell with a week off for chemo). But I work in IT so I have mainly worked from home and when the joints have been achy from TAX I have worked lying on the sofa. It is just less boring than day-time TV! I also only work 3.5 daya a week.

Had an argument with my husband tonight. Apparently I came downstairs and immediately started critising his cooking. In fact, I was checking the acidity and effect of the red pepper in the bolognese sauce he had made, so I could determine if I could eat it with the large mouth ulcer I seem to have developed. I felt it was better to check before he dished up and definitely not at the table with the 5 year-old listening. I pointed out that I wasn't particularly enjoying having mouth ulcers, breast cancer or any other side effects. I also reminded him that the pepper he had put in the sauce had felt like raw chilli in my mouth (admittedly when the pepper was raw) only yesterday, so putting it in a sauce was maybe not the best idea. Ho hum, I guess these things do put a strain on any relationship, but he is not the most empathetic of people (and rarely asks how I am feeling).

Still apart from the mouth ulcer and a spot of lymphodema I am relatively side-effect free, so I guess I should be happy (ish). Yesterday I was considering becoming a flamingo, so I could send the right hand side of my body for a good long sleep to help it all heal. Is this an option? Mind you, I guess flamingos don't get breast cancer in the first place.

Sorry, rambling now. Best go and read a bedtime story.

Sue

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Re: Starting Chemo in Nov 2011

Hello Ladies,

Yes, hope your last chemo went well, Trudie! and that your first rads went well today, Lulu. Yes, think we should start calling you Luminous Lou!

Hmm, it seems that those of you who had mx first, don't get mid scans, but that those who have the mx after, do tend to get them. Gail, I thought too, that having a mid scan would help them decide how many chemo sessions to give you. I'm sorry I keep harping on about it, but the novelty of it all has well and truly worn off now. Fed up of being ill and I'm just not bouncing back the same anymore.

Lulu, I don't want to have a special kind of BC! I've looked at pictures of IBC, and my boob didn't really look like that. It did go very mishapen, very quickly, but it also returned back to normal very quickly too. Before chemo, I do remember my Onc commenting on my boob being slightly red, but I was too embarressed to tell her that that was what was left of my sun tan! (and the other one looked just the same colour!) I'm afraid, I don't tan very well at all, and it might have been red to her, but to me, it was quite brown!!! (My other half and family have always laughed when I put on my Factor 30+, but I burn very easily otherwise!)

I actually put paintbrush to paper for the first time today in 4 months and finished a piece I'd started last October! Its the first time, since then, that I felt well enough to finish it, without comletely ruining it. I have to say, I found it quite difficult, and didn't particularly enjoy it either. Its so hard to feel creative, which is why I haven't done any work since all this started, because most of my commissions normally come with tight deadlines, and I can't do that when I feel s**t and don't know how I will feel from one day to another.
I really admire those of you who have managed to carry on working through all this, I don't know how you've done it. Sometimes it takes me all my time just to get out of bed in the morning. Thank God my OH has always been an early riser and has sorted out the kids in the morning!

Kym xx

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Re: Starting Chemo in Nov 2011

Hello All

Lizzy - You are doing well working full time. When did you have your last chemo? My last one was 24th Jan and I am still feeling exhausted and can't really do anything. When I do eventually go back to work I have to see Ocupational Health and it will be a phased return. I have been off sick over 7 months. Don't know if I will remember how to do everything. I started my hormone treatment of Letrozole last Thursday together with calcium tablets (for nmy bones). Don't think I have had any side effects yet. A few hot flushes but I had some of them on chemo and since I stopped taking HRT when I was diagnosed with BC.

Lulu - Hope your rads today went ok. I have had my 3rd now. My arm is a bit stiff but I must try and do my excercises. I am booked in for physio I think it is next week. I assume it will be later this week or next before I get any side effects. I am using E45 cream twice a day and washing with simple soap. Also not wearing a bra but wearing cotton vest tops with wide straps.

Hope everyone else is ok and not suffering too much. Troodles hope you have had your last chemo.

love
Axx