Anyone starting chemo August 2015?

[JenJen]

Lisa xx  sorry you arent feeling too good a GA is a massive thing to go through and add that onto everything you have been through lately with chemo its understandable x rest up and thinking of you x 

Carolec you just reminded me I have 2 Lush new bars I got as part of an xmas present I may start using them as soon as ive ran my current bottle of burts bees baby shampoo out which considering I keep shampooing my head every day out of habit whilst half asleep wont take too long! now im on T it may start to sprout back (fingers crossed)  🙂 - my lovely friend bought me lots of goodies to use during and  after chemo and bought me a big basket full of oils like avacado,  jojoba  Bharingaraj and essential oils that are all supposed to be good for hair growth 🙂 she got me some shower caps too which at first I thought was crazy but i worked out its so I can put the oil on my head and lounge around for a while and let it do its stuff 

Bibi my friend said Aloe Vera gel is good for psorasis and may help .. she said she kind of sits around for a bit before he shower with it on the patch on her scalp (she hasnt had chemo) and then rinses it off  when she washes her hair

Hope everyone is well xx 

[carolec]

Lisa you're bound to feel down after all the treatment and entitled to feel sorry for yourself.  My second time too - 14 years ago on 26th Jan - but at least they have caught it early and thrown everything at it - sending big virtual hugs xxx

PS I'm still using the same shampoo I used during chemo - it's called New from Lush - apparently stimulates the hair follicles xx

[Bibi44]

Big hugs Lisalou. Not surprised you're thoroughly fed up.  I think the anaesthetic is a bit of a downer too. Hope your armpit is not hurting too much & that you have a better weekend. I am using Nioxin shampoo & follicle spray. At least our hair smells nice even if it looks a bit weird. xx

[Lisalouw]

Hello ladies , feeling abit low today for some reason , not sure why , think it's just been a long haul and with it being my second time I'm feeling abit sorry for myself , my hair growing back very slow , more at the back but not much on top so I look abit like an old man at the moment , I know aveeno have a new shampoo out so not sure if that would be any good for you ladies that are having problems with your scalp , aveeno cream was the only thing that sorted my very dry skin out , I think it's 6 month for hair dye if I remember from last time but I think you can use the herbal one from holland and barratt before then , some of my hair white !!!! I was a brunette before , but did colour my greys up , are you all using special shampoo or just the ones you used before , I'm not sure what to use , Lv to everyone xxx

[carolec]

Hi everyone

jhbee I also lost my eyebrows and in fact hair from everywhere else after chemo and not during which is weird, although I suppose we are al different.  I also lost a bit more from my head and the front thinned but not sure if that was the letrozole kicking in.  Hair is growing back now and have a full covering on legs - just what I don't want!  I've been using Regain and Nourkrin conditioner for my hair but not religiously and also Nizoral which might help the scalp probs - think you recommended it through a link Bibi.  Bibi I also have the grey fringe now and a mixture of blonde/grey/white/mousey in my shoulder length bob and don't think we can colour our hair for some time. 

Brave - the deep breath holds are not that bad and you can use the technique for snorkelling!  Everyone I met in the waiting room who were using this technique said that they had coped well, apart from a lovely lady who was about 80 so I'm sure you'll be ok.  I also asked my consultant about the zometa and he said it is for osteoporosis but they are trialling it for recurrence.  This prompted him to arrange a bone density test for me as haven't had one done yet even though I've been on letrozole since end October.

Brave and Lisalou hope thr draining sorts itself out soon - I remember the too-ing and fro-ing to hospital but it will be fine soon.  Hope you're getting plenty of rest Lisa which is easier said than done with a little one xxx

[Bibi44]

Very interesting thanks JHB. I really want to use T-Gel, but I thought it might be too strong to use, so will give it a try.  Most of mine flaked off (kind of disgusting, sorry ladies) now I can wash my hair more often again (yay), but there is a small stubborn patch glued to my head, where I had a bald patch from botched cold cap application in Nov. Have decided to leave that bit in case it's not ready to come off. Sort of want it off so I can put regaine on the patch, which has c.1cm of hair growth.  Have much thinned dark shoulder length hair at the back & front is the original fringe still (nearly white). Sides are about 2" long (I think they snapped off) & a horrible shade of dark grey.  I had no idea what my hair colour was as have dyed for years.  I look TOTALLY ridiculous. My HB says he thinks it looks OK (gotta be kidding right?) but points for loyalty & being generally lovely. LisaJane I don't know if you're still out there, but what did you end up with? Ladies who didn't cold cap ... Yours probably looks a lot better.

Lisalou hope you are not too sore m'dear. You'll soon get those drains out & be doing the birdie song exercises like the rest of us. xx

[jhbee]

Thanks Bibi, that's v helpful. Meant to post to you re the horrible post Taxol scalp..the oncologist just said it should be  ok to use whatever I had used in the past (I did have dodgy scalp post pregnancy too) ie. coal tar shampoo etc. I've tried to get through to The Marsden's Medical Day unit to see if the nurses have a bit more specific info but no luck as yet. Hopefully yours is improving Bibi, but mine's definitely getting worse!

I already had mild psoriasis on my elbows before starting chemo and I remember the nurses saying that the chemo would clear that up, as it works on other fast moving skin cells (like psoriasis, dermatitis etc) as well as on cancer cells. My elbows cleared up beautifully! Then the Taxol and as well as much more hair shedding the  psoriasis has come back on my elbows and some on my face now as well as the cradle cap type stuff on my scalp! Makes me wonder if this indicates that the EC, was doing a better job at zapping the fast moving cells all round? 

Anyway have booked in with the GP now as bald patches combined with horrible scalp is getting me down, along with ever disappearing eyebrows and eyelashes. Sorry to moan but I think I'm a bit impatient for an improvement after chemo!

Lisalouw, hope you start to feel better soon. Brave, good luck with the draining, I had to go backwards and forwards for draining quite a bit, but it sorted itself out in the end!

Jx

[Bibi44]

JHBee I don't think you need to tell them unless it's likely to affect your income.  I found the attached http://www.theguardian.com/money/2004/nov/24/expertsproperty.property x

[Lisalouw]

Hello ladies , I'm home from having my clearance , feel rough and sore , got my drain still in , I have to ring the ward daily on how much it drains , the general anaesthetic seems to have knocked me for six this time , maybe it's still all the chemo , I'm not sure , hope everyone ok , I'm off to lay down , love to everyone xxx

[jhbee]

Hello,

Hope everyone is doing ok.

I have a random question! We are looking to remortgage as we've come to the end of one agreement. It's only just occurred to me (doh!) that I'll need to disclose the breast c. when applying for a new mortgage -  and that this might make applying trickier than in healthier days - yikes!

Sorry for boring question! 

Jools(jhbee)x

[bravescholar]

I think you're right, Carole. The Macmillan website says: "Exemption certificates cover all prescriptions, not just those relating to cancer. Anyone who has had a cancer diagnosis can get all their prescriptions free of charge, including those for cancer, the effects of cancer and the effects of cancer treatment."

I've got my rads planning session this coming Monday with a view to starting the sessions on Thursday 4th after I get back from my dad's funeral. I'm to have them for 3 weeks and one day and, Carole, because they want to zap the lymph nodes behind the chest bone, they want me to do the breath hold thing with - I think - the snorkelling apparatus.

My reconstructed boob and the underarm area are still filling up with fluid so I think I may need draining again soon.

The joys.

Love to all. xx

[carolec]

Hope everyone is ok today and think most have nearly finished chemo.  Lisalou hope your clearance went well - not sure how long they keep you in for so you may still be in hospital.  Brave my oncologist never mentioned zometa and I'm on letrozole but also having herceptin so maybe that would be too much but will ask him.  Also my GP never mentioned free prescriptions at all but I was lucky that a friend had had breast cancer and told me when I was first diagnosed. The Gp I saw at the time reluctantly gave me the exemption certificate to send off but I was told its for all medication for at least 5 years and not just for cancer related medication xxx

[bravescholar]

http://www.macmillan.org.uk/GetInvolved/Campaigns/Successstories/PrescriptionCharges/Prescription_ch...

Just wanted to make sure everyone knows that you don't pay prescription charges for cancer related medicines. I only found out by chance. I'd already paid three lots before I found out. My GP never told me! xx

[Bibi44]

Tania Glad you're feeling so well you are considering work again & all the best for the last couple of rads & the future. Thanks for your support over the past few months. x

[Tania786]

Thanks Brave. I was told that with triple negative you only have chemo and radiotherapy. The onco never mentioned anything... If itt helps reduce the risk of recurrence then it's worth taking it.

[bravescholar]

Thanks, Tania. I'm having Zometa, the first two rounds quarterly then six monthly or even yearly. I had the first one with my final chemo session. It's a bone hardener, and it's to stop you getting osteoporosis if you're taking letrozole and to potentially reduce recurrence. It's usually used if bc has spread to spine but i think it's being used more widely now. Google Zometa Macmillan and you'll get an info sheet. Good luck with rest of rads. xx

[Tania786]

Hello everyone, sorry I've not been able to come on this forum for a while. Hope you're all doing ok.

I'm really sorry to hear that Brave.

Just to update you all I've got 3 more rads to gp and then all done. I'm now seeing the breast gone darker and it does itch sometimes too. The nurse has asked me to use E45 during the day and Aloe vera gel at night and it's keeping the skin moist.

I'm also triple negative so won't have any other treatments after that.

Has anyone heard of Zometa? I received a letter for an appt in March to see my onco and it says she'll discuss the benefit of Zometa😯
No idea what that is?
I've also started working from this week for a couple of hours from home...

I hope all your treatment goes well!

Best wishesxx

[Bibi44]

Oh all the best for tomorrow then. Fingers crossed it goes ahead, so you have it over & done with. I'm fine ta. Chemo finished now, so rads next in a few weeks. Will you be having them after your op? I don't like the idea of subjecting my body to radiation, but I it will be the end of all treatment after that, so something to look forward to finally. Let us know how you go after the op. xx

[Lisalouw]

Hi deb , so that means the chemo doing it's job , yipee , that's positive and makes you feel better when you got a couple more to have , my son had a chest infection and stomach bug and I managed to avoid them by lots of hand washing and wearing a scarf round my mouth , yes I looked a sight , but at home it doesn't matter , my white blood cells used to drop very low every time , I caught my cold from my niece that came to visit from oz , I just can't get shut of this thrush from my mouth , it's horrible , I can't taste anything and feel like I've a lump in my throat , so you have my sympathy xxx
Hi bibi , yep that auto correct , I should check before I send ha ha , no it's in the morning my op , so I suppose it's upto the anaesthesiologist if I'm fit enough , I did tell the nurse at pre assessment about my mouth and ears but she didn't seem concerned , but she did say if the thrush got worse they wouldn't do it , so we shall see , I just want it all over with , but I want to be fit enough for the op , hope you ok ? Xxx

[Debs30]

Hi Lisa

Yes I too am hoping the side effects aren't too bad after yesterday. My MRI showed the tumour to be 24mm so oncologist wanted me to carry on as he said all good . He feels that I am now candidate for lumpectomy at the moment but I am keeping an open mind as it could all change . Have an open mind for mastectomy . Hope you are still able to have your clearance , thrush in the mouth is horrible , I've had it twice on docetaxel now and dreading it this time too . 

Really dont know know how I have managed to escape a cold so far as my husband and son have had them . My immune system must be better than it feels . Love and hugs back at you xxxxxx

Debs 

[Bibi44]

Lisalou so sorry you have been ill again.  I bet you just want to get the op over & done with. I can't quite work out if you are having it or not from your post (autocorrect in action again probably), but all the best when you do & hope your issues clear up quickly. BBx

[Lisalouw]

Debs poor you , hope you not feeling too bad on this one , your having some horrible problems with the chemo arnt you , what was the outcome of your last scan ? At least an end is in sight with the chemo for you xxx
It's the day before my clearance and I've a blocked ear and thrush in my mouth again so I can me not having my op , having a bad cold after chemo has really set me back , I've been to my doctors he says my ear are fine it's just fluid and I've got more fluconazole for my mouth , Lv and hugs to everyone xxx

[Debs30]

Well Ladies

No 7 chemo didn't go to plan again. I was given piriton through cannula before my chemo and waited half an hour before chemo was put through. One mil later I was once again having a severe allergic reaction to the docetaxel .

Doctor had to be called again , one I had recovered I was given more piriton and then half an hour later the chemo was tried again at a much slower pace. I was fine this time.

just one more to go , my last one being 8th February wahoo.

Hope you are all ok xxxxxx

Debs 

[Bibi44]

Oh Debs, you must be so sick of chemo by now & now another month before the last. Did they reduce the dose further or anything? You have suffered so much on it haven't you? I really feel for you.  Huge hugs coming your way.

Carole hope you're better soon. Have a nice weekend all & Brave hope all OK with you xx

[carolec]

Good luck debs for Monday - I had op first and found the chemo far worse but haven't had node clearance - in any event at least after the op the dreaded BC alien will be gone!  Jenjen thanks for that as explains why they don't keep me longer - my first 4 herceptin were while I was on the taxol so was there anyway for 3 hours - home visits sound good but unfortunately my hospital won't offer that but it's only a 30 min drive anyway xxx

[JenJen]

Hi Carole

Im doing OK been a bit tired but nothing too bad a 30min afternoon nap has sorted that out other than that I have felt pretty normal . I started to ache all over last night at about 10pm but up to now its nothing I cant handle and I managed to fall asleep so it cant hurt that bad im not sure if which one is causing it but they did say it might happen I wont complain though unless it stops me getting out and about 🙂
I had the herceptin in my thigh but they keep people for 6 hours first one then 2 hours for the second then after that itll be in and out though im having it chemo day so still there for a couple of hours while that goes through till chemo ends then itll be in and out as soon as possible, apparently the hospital im under has an herceptin at home team where they come out to you once you have finished chemo to do the injection, I havent been told about it but a lady on Tuesday had so I will investigate that further and ask the doc when I see them next.

Hope you feel better soon xx rest up
Jen x
.

[Debs30]

Hi Carol

I am having cycles 7 and 8 of chemotherapy , number 7 is on Monday. Then an operation . Had a 5 week break so not looking forward to it 😞. xxxx

Debs

[carolec]

Hi hope everyone ok.  Debs did you find out if you're having the op?  Good luck Lisalou for the 20th.  Jenjen how did you get on with the Paclitaxol and herceptin?  I have herceptin no 10 on the 22nd and its funny how hospitals are so different.  I have injection in thigh and I'm in and out in about 15 mins and don't have to stay for obvs - maybe because I'm not having it through IV/port.  I have the dreaded throat infection/cough which is going round at the moment - we need this cold weather to get rid of the germs!  Brave big hugs again and everyone else xxxx

[Bibi44]

Ha ha. You have plenty of time.  It seems to start as the odd occasion, then from about week 6 a bit more frequent & then Imodium stopped working for some of us, which is when it became a little activity limiting. I found that Imodium from the hospital pharmacy has 18 capsules in for 7.99, whereas supermarkets are 5.99 for 6.  Just a little inside info in case you end up buying in bulk. I remember Carole talking about it when she was on weeklies, but I had no idea how bad it was at the time (sorry Carole!). x

[JenJen]

I dont think the reduced dose woudl make much difference the nurse told me they throw the max at you but most people can get by on a reduced dose and some ladies end up having it reduced from 2nd cycle - but like you id probably want them to throw the full lot at me so mentally I knew I had done everything full whack to get rid of the alien. Rads should help that too though so maybe 2 on slightly less wont matter like you said though I guess you can decide then ask onc to up again if you want - and if they refuse then they dont see the reduction as a problem. certainly a pleasant change actually feel like I havent had chemo!
though I am dreading the TTs when they kick in come to think of it have one box of generic anti trots meds in so better go buy some more ! xx

[Bibi44]

Pleasant change to FEC pukesvilke isn't it? Yes reduction for 11/12th, but in a quandary now peripheral neuropathy has gone, should I come clean & do the full dose?? She did say the reduction would also help with the tax trots, much discussion of which on Sept, on the other hand, I do want to get rid of the mutant boob alien for ever.  Guess I'll have to take a view by Friday or will end up with another long day. xx

[JenJen]

Im feeling OK thanks Bibi I slept really well and have woke up starving! Day didnt start too well but it was OK in the end though I was glad when they let me out at 5ish. I chatted to a few first day ladies so felt a bit better after reassuring them it wasnt as bad as we imagine because in a way I was also telling myself at the same time. How are you? Is it 11& 12 they are reducing your dose? Hope you are well

Jen x

[Bibi44]

Jen Saw you had a right old day of it yesterday.  How're feeling today?

X

[JenJen]

Thanks Bibi x will certainly think about it and maybe get some in for number 9+ x

Brave x havent had chance to give you a virtual hug was worried about yesterday and caught up in that so here is one now xxxxx

[Bibi44]

It's 10g 3 x a day starting 24 hours after T for 4 days if you're on the 3 weeklies or 2 days for weeklies.  My onc had never heard of it, but it's very common on US threads & there is research showing it doesn't interfere with the action of T. She said it was fine, but I could tell she thought I was a bit mad. Well me not her with rubbery painful fingers, so my prerogative I reckon😀.  Jen I only started it on dose 9 because it doesn't usually start until then for weeklies. Not sure what dose is after you have finished the T though. I will do some research for you Brave, you have enough on your plate at the moment.

Brave hope things are not too awful. It's a funny old time between them dying & the funeral. We had 3 weeks with my dad & felt we were stuck in limbo for too long. Big hugs to you.

xx

[bravescholar]

Sorry Carole thought you were on L-glutamine already.x

[JenJen]

Bibi can I ask are you taking the L glutamine now? I was going to ask onc but wont be seeing him till week 5! How much are you taking if you dont mind me asking ? x 

Hope you are well 🙂 not long to go and glad you are on track again. 

Love to all ! Xx

Jen

[carolec]

Thanks for that tip Bibi will definitely try the L-glutamine.  Hope everyone ok today xxx

[bravescholar]

Debs, good luck today. Bibi/Carole, may try that L-glutamine.x

[Bibi44]

JHBee Could not agree more about FEC & T.  I felt ghastly the whole time on pukey old FEC & EC (I changed half way due to F toxicity). Some people have found quite the opposite & had no probs on FEC & just hate T.   We're all different.

Do let me know if your onc has any top tips to get rid of the dry scalp.  Mine's sort of like cradle cap for grown ups. I asked the pharmacist who gave me some cream, but it doesn't seem to have had much effect. 

Debs all the best for today.

Carole that L-glutamine seems to have got rid of my peripheral neuropathy. What a relief to get the normal feeling back in my fingers/get rid of the pins & needles.

Hope the rads going ok for you Sarah & Shelley xx

[jhbee]

Thanks for the Tamoxifen timing tip Bibi - will ask about it at my appt on Friday too. Interesting re the dry scalp thing - I'd been much happier on Tax after the grim sickness of EC (I had EC, rather than FEC) but I've definitely had more hair/ scalp, dry eye issues with Tax, I've even got patches of dermatitis on my face - last time this flared up was in my 20's, so I'm hoping it starts to fade!

Debs, good luck tomorrow, hope everyone else is doig ok. Jx

[Debs30]

Hi Lisa

I find out tomorrow if I am having 2 more chemo or an operation. Because I am now 4 and a half weeks from chemo number 5 my hair has started quite quickly to grow back. It's fairly thick and wavy. If I have 2 more chemo I assume it will fall out again . As far as I know I will be having lymph node clearance when I have my op and then radiotherapy . Big hugs xxxxx

Debs

[Lisalouw]

So sorry brave to hear of your news , my thoughts are with you and your family and sending big hugs to you all , I can't imagine how your feeling right now xxxx
Has everyone finished chemo now ? I've got my lymph clearance on 20 th jan which results of that determine if I need radio , I'm triple negative so I havnt got the option of tamoxifen , has anyone got any hair growth yet , I couldn't use the cold cap and it's 5 wk from last chemo , the growth is quite thin and fluffy , hope everyone one xxx

[Debs30]

So sorry for your news Brave, thinking of you xxxxxx

Debs

[Bibi44]

JHBee sorry knew the onc said something useful, but shared the wrong bit in my last post dhurr! I said I was concerned about impact of tamoxifen on sleep & she said people can sometimes get relief from changing the time they taken it each day, as that will change the time of peak flushes. You can also get some tabs from GP, but they try & avoid them if possible. If you are not a hormone reactor, sage tea is supposed to help too (if you can stomach it). x

[bravescholar]

Thanks, everyone, and thank goodness i'm fit enough to travel.xx

[Bibi44]

Carole Hope the anti-biotics help you quickly & reduce the soreness. 

JHBee my scalp seems to be peeling all over too.  Most attractive, like terrible huge dandruff & I can't even use head & shoulders. I have used the cold cap too.  Is it a thing I wonder?

I asked the onc how long before bloods were back to normal & we don't have to worry about infections.  She said it's less about the numbers of WBC & more about how they react in the face of infection.  She said they are sluggish to start with & usually get back to normal around 6 months. X

[Bibi44]

Oh Brave, that is so tough for you all. My thoughts are with you. It's difficult timing too, but I suppose that is the least of your worries right now. xx

[jhbee]

Brave, I'm really sorry Jx

[carolec]

Hi everyone

Brave so sorry to hear about your Dad and no it's not fair at all at this time - try to take things easy (easy for me to say) as you're still recovering from your op, but you'll be in the best place surrounded by your family - my heart goes out to you.

Bibi glad to hear they are reducing your dose and Sarah glad you did ok on your first rads.  Richelle well done for almost getting there and debs good luck for Wednesday.  Jhbee I'm going to sort out some accupuncture as helps with the hot flushes and neuropathy from taxol but I've heard yoga is good too or one of those mini fans.  I went through the menopause a couple of years ago so this is a second lot for me thanks, I think, to the letrozole.  My hot flushes so far have not been really bad but if they are I end up taking layers off when it starts - only down to a tee shirt mind, I'm not that brazen!

Ive just come back from seeing my onc and am suffering from a strep infection - not very pleasant but the rest of the area is fine.  It's only where they put the bolus plus the boost, so on antibiotics.  It does get on my nerves when they say this is very unusual as if I'm some kind of oddity!  Anyway it looks better already so sure it will be fine in a few days.  Big hugs to you all xxxx