hair loss???

Hi Girls

Gail Before Herceptin I had to have an echocardiogram on my heart(spelling not my strong point) But not a blood test. I did ask about blood tests with Herceptin and was told by the chemo nurse that you only need a blood test every three months or so. The first Herceptin I had to stay in the chemo unit for some hours after it was done to make sure I had no bad reactions. I can honestly say that having had 2 herceptin now they have had no side effects on me at all. Like you my first herceptin was done on a different day to my chemo, this time though I had them one after another. Now I have just typed that it has made me wonder if that is why the tax has hit me harder this time.

Lizcat Thanks for the taste tips. Unfortunately pineapple upsets me but I will give the fizzy drinks a try.

Well I saw the consultant this afternoon and much to my relief he says that the chemo has had enough of an effect to move onto surgery after my next and last chemo. He has also agreed that as I have a strong family history of Breast cancer he will do a double mastectomy, together with node clearance. This is scheduled for the end of february or at the very beginning of march. My last chemo is 23 January. MRI 3 February. See him again 11 February and then on to the surgery stage. Good job I keep a diary with all these appointments to keep track of. He also offered me reconstruction but as I will be having a double MX and I am no spring chicken I have declined.

It seems odd to be looking forward to surgery but I think you will all know how I feel. The day this cancer is finally taken away can’t come soon enough.

Thanks for all you support

LOL
Andie xx

Dear all,

Only a brief post tonight as absolutely exhausted as 10 minute hospital visit turned into 8 hours - and staying up late now to squeeze in 3 hours work - and going into the office tomorrow. It was my first visit to the oncologists - and found that although the hospital provides appointment times, these are truly notional. The consultants tend to see people they know first, so despite having an early appointment I ended up going in last - some 3 hours passed my appointment time to be precise. I was encouraged as he dismissed the NPI way of calculating prognosis (based on patients diagnosed in 1967 which my breast surgeon quoted), and gave me better odds though based on modern drug regimes. I am being cautious however, as although mastectomy was clear at the margins I had 5 lymph nodes infected and there may already be mets (even though breast surgeon said there were not as no evidence of blood supply developed - very confusing when two consultants say different things). I had a CT scan to find out for sure about possible spread - and get the results in a couple of weeks - I think I am more scared about this than anything. Waiting for the CT, ECG and chemo nurse - made up the rest of the 4 hours in the hospital.

I am going to start the chemo all being well on 23 January: 3 FEC and 3 Taxotere. The oncologist said there was no point using the cold cap as I would lose my hair with the Tax, but when I established there was no medical reason why I couldn’t - he said it was fine for me to give it a try. I have read reports on here from ladies who have been told similar predictions about hair loss to me and have kept it - so think it is worth it. As a safe-guard I am picking up my bespoke wig tomorrow as cannot quite imagine wearing bandannas (nearly wrote bananas) into work.

Also found out today - that I have weak receptors for Oestrogen but negative for Progesterone and Her2. I felt a bit down about this - but oncologist said it is better to be Her 2 negative (thinking of you Shelly and Caron) as Her2 positives tend to be more aggressive cancers. With my Oestrogen positive outcome it means I can take Tamoxifen - though not sure about level of benefit.

Too tired to read above for sense… but thinking of you all.

Good night love Bright xx

Caron, here I am! Sterioids obviously kicking in it’s the first time i’ve felt like doing anything all day. feeling reallt rubbish after 2nd FEC. Been back at marsden for physio today and have come home with a sling for my arm. had two lots of surgery as didn’t get clear margin 1st time round and it’s caused a few probs with nerve damage etc. Got specialist over from fulham to check me out as think they were a bit concerned could be permanant damage but she thinks not so, just lots of physio and time and well b ok eventually. hope she’s right, they don’t tell you about this side of it do they? can’t believe u pulled on your eyebrown you nuggett!! I have to reminding myself to stop rubbing my eyes when tired in case my lashes come out. Chemo nurse told me my eyebrows shold hold on thru FEC but will prob come out straight away with Taxotere. god just read this back, can’t type!!! is your head sore? mine hurts like hell bit worried about infected hair folicles. My tummy is really bloated tonight look 6 months gone, surely that’s the big bung up on the way!! sickness settled down though, thank goodness, not keen on that part of it either?

Anyone asking about lymph nodes, in my expereience, i had 3 nodes affected and 2 lumps in breast. obviously then had to have all lymph nodes removed in that arm so i had 3 out of 27 with cancer in them, obviously I was extremely concerned about spread to organs and bones when it got to this point but have to say got all clear from CT scan just b4 Xmas and all clear from bone scan yesterday so am over the moon about that. So please don’t lose heart if you’re still waiting to find out about lymph nodes. It’s obviously very worrying if they’re found to have it in but doesn;t ness mean the worse but that’s obviously why they take the others out as a precaution! Also had a chat with onc on Monday about tomoxafin after chemo and wished I had’t really. They talk about all these different reports and trials on all these drugs and findings seem to change all the time. We just gotta hope that everything will work don’t we!

Feeling really tired again so will sign off now and try and catch up tomorrow, don’t want you to think I’m being unsociable to those i’ve not replied to, just trying to get used to everyone’s name and got brain ache so will read properly tomorow.
Jo X

Morning ladies

What a night its been,i have hardly slept. My whole body seems to be agitated and anxious,i cant stop fidgeting.
I have just spoke to the doctor who says i can have some Temazepam sleeping pills.Great as i know they will knock me out and give my body the rest it needs.
I think i must be worried about my pre assessment and op,i try not to worry but self consciously i must be.

Andie- I know what you mean about looking forward to surgery.I just want it out of me so i can start to live my life again and not plan my life around appointments and hospital trips.Good luck with your last chemo and op…xxx

Bright- My fingers will be crossed for you and i hope your CT scan is clear.Well done you fro telling onc you wanted to use the cold cap,its your choice so you have the right to choose.A lady at my chemo was using one last week,it looks like a riding hat with a swimming cap over the top…If it does the job who cares what it looks like…

Jo- my tummy is bloated too,since Sept i have put on one and a half stone,there are times when i just cant stop eating the wrong foods,like a craving. Those steroids have got some kick in them i can tell you…
Its a shame you have had to have 2 lots of surgery,do you have clear margins now?

Going to have a cuppa now.

Hope your all trying to rest and re coup-orate

((((((hugs))))))
Shell
xxxxx

Hi all,
I know when you have ur chemo u can feel the cold in your arm but I could feel it going all round my body near my heart ! my stomach was churning my head was spinning ! ( i felt really ill , hope the next one wont be like that ?, also I had a early appointment and they had just took the drugs from the pharmacy 's coolbag and not out there own fridge , dont no if this makes any odds ? )
I felt really really sick ( but wasn’t ) so I shut myself away in my bedroom for the night !. feel a bit better today . no sickness feeling just the headache !.
My arm doesn’t hurt yet Shell ( it did from the 1st lot but not yet fromthe second lot ).
I was thinking how all them poor little kids manage with chemo ??? and I was thinking about my cousins little boy Lewis he died when he was 7 /8 of cancer ! he had kidney cancer and there was nothing they could so for him ( bless him ).he fought since he was about 2 or 3 years old.And his grandma who he never met ( she was very beautiful and was a dancer ) died of breast cancer when she was about 28 .but they are not blood related to me .
I never managed to eat my lasagne in the end ! all I had was some beans and lettuce AND I STILL MANAGED TO PUT 1LB ON !!!

Bright … I don’t know about HER2 yet just that it’s negative for progesterone and oestrogen but I was told this was better also because it’s not hormone dependant and it’s less likely to come back, especially if it’s Her2 neg ( so I am hoping that I am Her2 neg as well in this case !)
so SHELL you really ought to find out about all this as yours is not hormone dependant so is less likely to come back , ( i dont know if yours is hereditory ? but I should say this would make a difference ).
what did thet say to you having a double wammy LOL mast ?? did they sat they would ?? … thinking alot of you x

Andie just tell us when your appointments are we will tell you !! LOL

Bright good luck with the coldcap ! ( i can’t have brain freeze ! LOL ) and when I had my CT Scan I think I had it on the Thursday and my nurse rang me on the Monday !!!

Jo ( cant remember wot I was gonna say now ! ) ahh I read urs again ! my head isn’t really sore cos when I shaved mine I put aftershave on it ( so I smelt really nice ! lol) but the other day it was really itchy felt like I had the dicks !!!

Gail the nodes are really glands in your arm pit ( or a bit lower down ) and the cancer from the breast spreads to the nodes first I am not sure how many nodes you have though ? but if the cancer is in your nodes then it’s easier for the cancer to spread using the nodes ( glands ) as they are all around your body , if you have ever had a sore throat you have probably felt them in your neck? at least I think thats what it is.

Lizcat hope you are ok too ?? ( GOD I HOPE I HAVN’T MISSED ANYONE ? ) LOVE CARON X

Hi Caron

Because im triple negative,my tumors size,nodes involved and my chemo has failed i am at a high risk of spread/secondaries.My type of cancer can only be treated with chemo…As this has failed there isnt much else out there to be offered to me…There are about 15 woman out of 100 who are triple negative…

I wish i could have “The Wonder Drug Herceptin” at least it would keep my cancer at bay…

I have already been told i wont be offered any more chemo as my body is not responding to it.
I just pray the surgery will take the cancer away and the rads will finish it off.

Hope your not feeling too sick today,or tired.
I am still in bed, I’m wide awake but I’m exhausted and agitated…if you know what i mean??

Wheres muv??? Hope shes ok…

take care ladies

Shell
xxxxxx

Hi girls,
Sat here in my dressing gown watching TV. Hubbie back at work today and kai is at nursery. Peace , but the house is screaming “tidy me” and my body is shouting “stuff the house…watch diagnosis murder, stuff your face with chocolates and don’t get dressed until you really need to”. Who do I listen to??
Felt really down last night so took myself off to bed early to eatch repeats of CSI to cheer myself up!!! Close pal has just got engaged and has new job and I felt so so happy for her…but also so jealous. (feel really bad feeling jealous!!) This disease has just robbed me of my joy and stuff to plan and look froward to. Well it’s a good job I am seeing my “nutter doctor” today as I clearly need him.
Jo - my head got sore on FEC.It’s normal apparently. My eyelashes have started going after FEC 3 and really hurting my eyes. Hope you’re feeling better.
Bright - cold cap is OK…just cold (!)and you’re there for a whil (although you can unhook for the toilet!!!). Don’t wash your hair too much and swich to gentle products. My hair still came out, but have some left (look a bit like a witch though and have started wearing lots of hats and “pieces” as my hubbie calls my wigs. Can’t bring myself to wear a bandana…maybe in the summer). I start Tax on Tuesday so will let you know what happens…some peeople seem to lose it and some seem to start growing hair again!

Yes I heard that 15-20% of women are triple neg and 15-20% are triple pos (which I am). Both are aggressive buggers apparently, but Herceptin here for HER2 people. They are doing loads of research on tripl neg though. Best to be hormone (but not HEr2 ) positive then I guess??? But…one thing I have learnt is that this disease doesn’t follow any rules at all, so we just all have to hope and fight. (easier said than done though) and not concentrate on the stats etc (also easier said than done).

Caron - hope you are feeling better. Sent you a friend request on facebook (I hope it was you…)
Andie - good news about surgery. You sound brighter. Hmm…hard to know if the herceptin is having effects. I’ve heard some people say they feel ill and others say it’s fine!

Thanks for the nodes info and I read the factsheet. It just adds to the fear factor…but I guess they will just remove them all when I’m being done for the mast.

Off to eat now…

Gailxxxxxxxxxxx

Hi Gail
Caron has sent me a friends request for you too on face book.It will be nice to put a face to the names.

Any other ladies on face book???

Shell
xx

Hi I have just been looking back and we have havn’t heard from muv since christmas maybe she is still at her nieces wedding ???
And also Bethy has gone so I sent both of them a message asking where they had gone ! come back we need you !!!
love caronx

Hi all, sorry to have been away for so long, have been exhausted and really fed up at times. I thought I would be over the op by now but op site and underarm are still very painful, although scar has healed very well. Have had cording, been released once but back again. Have seen onc and will be having FEC x 6 as he says side effects less than taxotere and results comparable (anyone heard anything?) Am hormone + waiting for Her2 results.

On a lighter side had a good Christmas and really enjoyed the wedding, in the end we didn’t have to go in our wedding outfits as I realised I would have to get undressed & couldn’t struggle out of my dress alone!! So everyone was spared the sight of hubby in kilt! We only missed church, but made it to reception in time.

Glad kids are all back at school, hubby too!!

Hope things are going well for everyone, will have to catch up with everything I have missed. Lots of love to you all and belated Happy or at least happier New Year 2009

Muv

Muv-cording does get easier but it’s a weird one isn’t it. 10 weeks on I hardley notice it at all now and if it happens it seems to snap quite quickly on it’s own and not painful just annoying!

Caron, having head shaved completely tomorrow, so might try the aftershave trick, thanks for tip! Hope you feeling better today, I can’t shake off headache or stomach ache, FEC 2 is defo worse that 1st isn’t it?

Gail, my eyes have been sore today actually so I,m wondering if they’re on their way out? Got a night out booked next fri for hubby’s birthday so hope not, bad enough trying brave going out with wiggy as it is, don’t know if I’d manage false eyelashes as well, gonna look like a bloke in drag!

Shell, yes thankfully they finally got clear margins now. Regarding bloating, I lost a stone and a half on weight watchers last year, worked really hard on it to, so i’ll be really miffed if after all this cr*p i’ve gotta diet as well, is there no justice in this awful unfair world!

Oh well, on positive note, got my nine west boots that i’ve had my eye on so that’s cheered me up a bit, at least my legs will look good even if the rest of me looks pants!

night night. Jo X

Hi girls,

Good to hear from you Muv. I have a very strong kilt fetish brought on by attendance at my pal’s scottish wedding a few years back. Another of my pals is getting married in Scotland in Sept…so am looking forward to it!!! I’ve heard that Tax can be stronger than FEC and side effects do sound worse which is why I am dreading my Tax chemo next week. Don’t know if this is true though.

Saw my Psycho Doctor today. He is so nice and I poured out all my bitterness and evil (ie why me etc) and my sadness at losing Christmas (to damn hospital) to him. I have to plan lots of things to look forward to as a family (as feel that the next few weeks are all about chemo and crap), try to get out of my dressing gown before noon (what!) and buy myself some fairy lights!!! I wore wiggy for my appt and he didn’t seem to notice my new long locks. Collected kai from nursery and when i got home …had to take wiggy off (itching like mad). Kai looked very confused for a moment and then told me he preferred my real hair (now patchy witch hair). But…bless him. Thought I might be scaring him with my witch hair, spots, inability to use my chemo arm properly, watery eyelashless (!) eyes, coughing and vomiting…but he seems unphased…!!

Steve nearly had a heart attack tonight as I cooked. Chicken surprise as usual…but it was actually edible!!! Time will tell!

Anyway, I’m going to finish watching celeb BB and then go to bed. Might dare to go shopping tomorrow!! Maybe I’ll even cook again!!

Much love to you all,
Gailxxxx

Dear all,

I hope everyone is okay this evening. I am feeling really under the weather, not sure why, but a combination of absolute fatigue, slight nausea and a general feeling of being out of sorts. But nevertheless I went into work today and managed to pay attention and contribute during a three hour meeting about boys’ underachievement at school - particularly on how we can improve their interest in reading and writing. We are organising some regional conferences to look at these issues in March and I’m hoping I can go to them and have organised the chemo routine accordingly.

I work in the centre of Westminster, and have a view of the Abbey from the window where I sit near - and most days I hear the chimes of Big Ben as I turn the corner to reach the office. I met with my boss today about arrangements for my working through the treatment. She is very supportive and has suggested colour coding my diary so that I can pick out treatment days and times in the cycle when I am most likely to feel well and less well - which will indicate whether I will be free to attend meetings or not. I am wondering whether I will be able to apply mind over matter with this illness, when most people seem to give up thier jobs for the duration of treatment. I suppose time will tell at the end of the day.

I picked up the wig today - and it is very impressive. It is the same colour and has a similar wave and texture to mine, though I think there is more hair in it than I have. I need to contact the wig fitter to ask her come over and tell me what to do with it. She needs to cut the lace back and show me how to stick or glue it in place, and how to wash it of course. I am going to try the cold cap but from reading most threads can see that it does only work for a small percentage of people, and at least the wig is here now if I need it. Just so depressed that it will take me at least 4 years to regrow my hair which is about 28 inches long.

I have seen Muv contributing on another strand a little while ago - not sure why she has not written here. I wonder sometimes what happens to people when they stop writing. Sometimes I think particularly at the beginning of diagnosis there is a temptation to write on lots of strands, and it is only later that one realises that it is difficult to keep up. I occasionally write on one other, but this is the main one for me now - unless I have a particular problem and I might start a short strand - like when I got gangrene after the first surgery.

I am reading about your arms hurting from the chemo - the delivery sounds like a nightmare. I will only be able to use the arm where I have lymph nodes still, as I had surgery first. And the nurse was telling me veins can collapse or risk clots. He mentioned I may have to have a central line fitted - but not a hickman (that one sounds too scary) - but again there is a risk of clots with the central line and the entrance can become irritated. I don’t know how I will cope - arms in water and pads - just sounds awful … the search for blood and veins reminds me of Dracula…

Sorry you couldn’t sleep Shell and still worrying about treatment - why don’t you see if you can get your care transferred to the Marsden I am sure the hospital can do so much more for you

Caron - your experience of latest chemo sounds scary - a bit like my experience of the CT scan. Hated feeling the dye going all round my body - really eerie the way it gets into the mouth and tasted like ammonia.

Gail - the housework will still be there - be good to yourself and rest and watch as many episodes of CSI that you can handle. I am a bit like that with come dine with me

Jo - hope you are feeling more refreshed today

Love Bright xx

Muv,

Sorry - like you I have been battling the surgery - needed revision surgery as got gangrene first time round. Glad you are okay though. My doctor told me I am having 3 FEC and 3 Tax - says they work in different ways and that this treatment produces nest results. But that may be because I have 5 lymph nodes infected. If yours was less advanced then FEC I think alone should be fine, as that is what I was initially offered when they thought I had only SNB involvement.

Bright xx

Hi Bright, nice to hear from you again, hope you feel better tomorrow, I admire you for going to work & hope you are not overdoing things!
I had 3 cancerous lymph nodes out of the 18 they removed so maybe that is the reason. You listen to what they tell you & it’s only afterwards that you start questioning, he said as I had young children FEC would give me less side effects. I hope it does work as well as a combination. Just one more thing to worry about! The onc was from St Thomas’ & Guy’s so hopefully they do know what they’re talking about?

Muv xx

Morning Everyone

I finally feel as if I have come out of the Taxotere fog for this time round. I have even arranged a lift to the shops to sort out PJ’s for hospital. I know I am a bit ahead of myself but any excuse to get out will do. Maybe even the floor will get vacuumed, and my poor tropical fish are begging me to clean them out!

Muv it was good to hear from you because I know your care is being handled by the PRU and so is mine. As you say the oncologists there are from Guys and St. Thomas’ and they really seem to be on the ball. Who was your surgeon? and how did you find being in Orpington hospital. Sorry if that becomes too many questions. I am very near the end of the chemo part of this journey and will move to the surgery stage late February. I have had all my chemo in the treatment suite at the PRU and the nurses there are fantastic. Also all the drugs that you might need to cope with the side effects are easily available just in case you need them. You don’t have to beg for anything.

Do any of you girls bruise at the site where the chemo goes in? I always do and normally the bruises clear up before the next lot is due. Although I have one place where I bruised not at the last chemo but the one before. I have pointed it out to the nurses and they are not in the least bothered - it just looks unsightly. The time that I felt the stuff going in and it was really cold (straight from the pharmacy) they slowed it right down and ran it in with saline at the same time. That worked.

Bright the colour coding sounds like a good idea although I found that the effects from AC hit me at a different time to the effects of Tax. AC was more or less immediate - tax took about 5/6 days.I take my hat off to you girls who are managing to work and who are coping with young families. As I am that bit older and retired I only have to cope with me and OH. (Some might say that that alone is like coping with a 5 year old)

I know I am being naive here but not having had surgery yet what is cording?

I hope everyone has a good day

LOL Andie xx

Andie,
I too was wondering what the cording is !!! and also what is SNB involvement ( Bright ).
I thought I slept ok last night through the heartburn and Headache !! and some pains in my legs ( felt like cramp ),but I went back to sleep when Steve brought me burnt toast ! ( I hate burnt toast & he knows it ! ) which I left I left my cuppa too had a drink of tonic water and some headache pills instead !.
Bright I am having 4 EC x 4 Tax !!! . mind you I have been thinking about this alot and the more I think about it the longer I think I have had it !!! not just the 4 months I thought in the first place either , I remember saying to my sis months ago ( before I went on holiday last August ) god my boobs ( should have realised it was just the one ! ) have gone like I am 18 again !!! … I now know that this is the cancer and I have been so naive !!!
I didn’t go till I could see a visible lump ! and I was reading that the best way to find out is through mammogram and not by feeling as by the time you can see feel the lump it is much bigger than can be found on the mammogram! but what if your only ( I say only ! LOL ) 40 like a lot of us women we dont get the chance to have a mammogram !.

Andie how have you been on the Tax ??? what are the s effects ( are they much worse than EC ( or FEC )??
I am a bit reassured that if the cancer is contained in the breast and also in the nearby lymph nodes it is still classed as early BC !,
Andie how long does it take to come out of the s effects of the Tax?
I know on the EC it’s about 4/5/6 days.
I think I am due my period but dont know weather it will materialise ? I have the swollen / sore breasts ( not cos of cancer ) and thats how I know I never time them I dont have to I can tell just by them !!. and thats another reason why I left it so late to go to the docs cos my bust could be like it 2 weeks b4 my period so then you have 1 week when your actually on your period and 1 week after to check yourself !.

Bright I don’t know how you can work as well ! ( I am classed as working but I don’t have to do much just take calls and count the money , and Steve hasn’t been back to work yet since christmas ( perks of being your own boss ! , but he goes back next Monday ).
I took Chloe to London once we were told she had a eye disease ( macula degeneration disease ) so I took her to London for the weekend to see a show ( the full monty ) and we stopped in the holiday inn on mayfair !! ( oh how the other half live ! ) we really enjoyed it and I had a portrait of Chloe done it was really good.
Turns out she has got really long sighted and can’t see anything without her glasses but luckily she has not got the disease just the backs of her eyes are white and they should be pink ( but so are my mothers ) .And Chloe wears contact lenses now for school as the optitions said she was mature enough to have them !

I hope you are ok Shelly today ???

Jo I had my head shaved seems ages ago now and I have bald patches now ( completely ) and the hair is just coming out now I reckon I will have no hair in a couple of days ???

Take care everyone Love Caron xx
ps ( sorry a bit down today ) X

PPS Muv I knew you’d be enticed back LOL XXX

well just heard about the baby girl being born without the bc gene but I have been researching this and its every single woman has a chance of getting BC weather they have the gene or not !
Infact the stats go like this 80% of women who get BC have no hereditery gene ! and it’s only 20% of women who have the gene that get it !
What I am saying is cos this baby girl had the gene removed then surely it is still possible for her to get it ???
As in most cases they dont know what causes it in the first place.

Also does anyone know about this if you are in menopause do you still have to have cervical screening??? ( I am not sure ) and what is the link between cervical cancer and breast cancer ?? Love Caron x

Hi, Caron, I had cervical cancer in my 20’s, before I had my 2 daughters - it was cured by a cone biopsy. I was really naughty this year and missed my regular smear, but I’m guessing that the chemo I’m currently having for breas cancer will blast anything that’s arisen there too! x Jackie x