Maire, that's an interesting point re maybe some of the women having no spread anyway. I am going t go back to the medical literature and sort this one out in my head properly, Chemo Brian allowing.
I agree with you that on balance, I'm glad that I've had chemo, even though I've been kicking and screaming all the way. If I hadn't had chemo, and it came back, I would always have been wondering if the chemo would have helped.
At least if it comes back now I will know I did everything I could.
And the 7-8% increase in prognnsis of 5 year disease free survival, however it is derived, is significant.
As you say, in a few years' time they will be so much better at analysing the disease on the molecular level that they will be able to target the treatments much more effectively.
it's interesting hearing about your rads experiences - I now find I can't wait to get going with that, purely on the basis that once the rads is over I will be largely free of the hospital, and can have more of a life again. I just want t oget away from hopsitals and doctors now..
The weight thing is a problem, particularly with the dreaded Tamxifen looming after rads. I feel like I've really got to get a grip on it, soon, but right now I'm just too bl**dy tired and fed up with it all.
Cybele, The statistic are very confusing. I took it that 8% of woman benefit from chemo and the other 92% don't. I assumumed this was because a significant % of the 92% had no spread rather than the chemo not working. In a way I feel my chemo is probably farting against thunder because I had no spread to the lymph nodes but I will never know. I don't know how anyone can measure the benefits. I've had no scans so no idea if any cancer is lurking and even if i had had scans they wouldn't necessarily show any cancer at this stage. Unfortunately, through this experience, I have met many many woman who are back getting treatment for the 2nd time and so i'm glad I've had chemo 'just in case'. I suppose hair loss, horrible mouth and all the nasty side effects we've enjoyed (snort!) shows that those rapidly dividing/reproducing(?) cells are being hit hard, so the chemo is working in that respect. One day, I really hope, there will be a much more individual, targetted, measurable treatment for breast and other cancers because, to me, it still feels very medieval.
My weight has fluctuated a little during chemo but is more or less the same. I am determined to lose weight but it is really hard. I thought going back to work would help but I've actualy put on 3 pounds since finishing chemo and starting work. I have been eating the same amount and getting more exercise. Think I might have to look into that 2 day diet too. However, tonight, I will be drinking two different colours of wine!
Hamley-Glad you've got your surgery sorted and it sounds as though it's better to have a number of smaller ops. Hope it all goes well for you.
Shellebelle-your tax reaction sounds awful. When I was getting mine a woman in the next room had a full scale reaction and there were doctors and nurses appearing from all around the hospital. She ended up being transfered to the bedded unit. Just shows how brutal Tax can be.
Off to take my youngest swimming now. Once that's over I will be back to uncork the white!
Got new appointment to see Oncologist next Wed am to discuss way forward after the severe reaction to 2nd Tax yesterday, which had to be abandoned. Don't really fancy attempting another go if I'm honest and may not be an option anyway, will have to see what transpires.
Something else to worry about - little lump has appeared on MX scar, although can't be sure it isn't just a zit as it seemed to come from nowhere! If it hasn't gone by time I see ONC on Wed then I'll get it checked out - blooming one thing after another at the moment.
Feel like I'm on a massive 'come down' from the extra steroid booster injection yesterday to try and reverse the reaction, on top of the 3 x previous high doses I'd taken on Tuesday/Wed am.
As for comments re weight gain......I've put on 10lbs since starting chemo mid December and my face has taken on a 'hamster cheek' look 😞
Enjoy your weekend ladies, the best you can - thinking of you all xx
I have that book too and will be starting the diet as soon as I get back from holiday after Easter - I was going to start during rads but I need to be able to give it 100% and I am not giving anything 100% at the moment! I will be interested to see how you get on with the diet, I have heard lots of good reports so fingers crossed.
Mandy, Hamley - I have been putting on weght, too. It's so bl**dy depressing. Last year before DX I was doing lots of long distance swimming, about 5 miles a week, and was in really good shape. Since October i haven't been able to swim, and most of the time haven't even felt up to much walking even, and my weight has gradually been creeping up, withr the help of the steroids and the Despair Demon, because hey, when you're going this HELL you have to do something to cheer yourself up, and eating is by fat the easiest way to get a qucik fix..
I read somewhere that most women put on weight during chemo for breast cancer. As if we didn't have enough to contend with.
I am now having difficulties getting my jeans done up, and showing a worrying tendency to change into something with an elasticated waist whenever possible. This is NOT GOOD.
I want my life back, and I want my waist back.
I'll be back in the swimming pool a week after they've taken the PICC line out, which should be mid-April.
And then I'm going to swim and swim and swim...
NB the other really important thing is that obesity is highly correlated with breast cancer recurrence. Probably the single most important thing we can do to help prevent the cancer coming back is to lose weight.
Hell of a good incentive to diet, eh?
Also - there is a version of the 2 day fast thing that has been developed by breast cancer researchers, and it looks as if the changes in your biomarkers caused by the 2 day calorie restriction approach help to prevent breast cancer coming back - so I'm going t otry that, as soon as chemo is over. I bough thids book, which is by the breast cancer researchers from Manchester University:
The 2 Day Diet by Dr Michelle Harvie and Prof. Tony Howell
Hamley - great news!! What a relief, and so pleased that they're letting you do what you want, which sounds like the bestthnig for you xxx BIG HUG
Mandy - the bit about the perfect murder was a quote from one of us Crackers, a few weeks ago, although I can't remember who said it - the image of having no fingerprints and being able to commit the perfect murder really stuck in my mind!
Shellebelle that sounds like a complete nightmare - so sorry you had such a terrible time xx
QD - sorry to hear of your loss xx re the Woman With No Side Effects, she was having chemo as neoadjuvant therapy to shrink her tumour, and it didn't have any effect at all, so I assume she had an MX, although I didn't ask her.
I've been thinking about her a lot - no side effects, and no shrinkage of tumour - it sounds as if her body is totally resistant to chemo in every way, which makes me wonder if there is anything in the idea that if you have bad side effects, it shows that the chemo is working, which doesn't seem to me to be necessarily true.
For example, I know that chemo will only be effective on 7 or 8% of every 100 women who have my type of tumour, ie early IDC, grade 2, favourable tumour characteristics, one micrometastasis in sentinel lymph node. So for 92 of those women the chemo doesn't work, but it seems unlikely that they all have mnimal side effects.. I would have thought that there were relatively few people who have very light side effects.
I think Chemo Brian has got to me, I can't get the logic of all this clear in my head....
I dunno, I think it would be unwise of me to assume that my extreme nausea, stomach probs etc have any relation to the effectiveness of the chemo on knocking out circulating tumour cells.. It would be nice to think so, though.
Cressida - hope you're reading this - I am missing you VERY MUCH. Your mordant humour cheers me up every da. Hope that your condition is improving, that the docs have got their act together and agreed how to treat you, and that you will be rejoining us shortly . WE NEED YOU xxxxx
MASSIVE HUG xxxxx
In other news, my toothache has abated, root canal is scheduled for Tuesday - 2 days before FEC5, why does God hate me? - and a friend is coming over this morning to take me on an outing to Chiswick House to see their camellia festival, which I am very excited about, as I've hardly leftthe house for days.
Love and hugs to everyone, and especially those who are in days 5-10 of the chemo xxxxx
Mandy, I'm struggling with my weight too. I lost 5 stones in the two years before dx and was really happy with my new self when I got to target so went out and spent loads of money on new clothes. Three weeks later I was dx and after surgery all my new clothes which are made for larger busted ladies (from Pepperberry and Bravissimo) and are close fitting and gorgeous look horrible on me and my smaller boob is really obvious. Now I've got the additional struggle to even stay in the size with a stuffed bra. Poo.
My sister (who is a nursing Sister) told me that it's usually the steroids that make you put on weight and that it should be temporary as long as you're not comfort eating, which is very tempting at the moment and I've certainly gone there (Turkish Delight!).
My Mum was on Tamoxifen then Arimadex after her bc, although she didn't have chemo she put on 3 stones and has never managed to lose it in the 10 years since her rads. My Dads second wife had bc at the same time as my Mum and after an mx refused chemo or rads. She put on 2 stones while on tam then arimadex but she's managed to lose most of it. Interestingly she's still very much with us 10 years later with no chemo or rads. I guess it's down to the individual.
I lost my weight with Slimming World and am still going there but struggling. I'm determined to get back to where I was, it's one of my most important issues in life because life's so much easier when your slim.
Good news Hamley. Really good news.
Love the blog Cybele. Especially the bit about the perfect murder.
Saw onc tonight and I am to have more steroids on next tax to try and abate the rash! Great!
Is anyone else putting on loads of weight? When I started out on this journey I said to myself it didn't matter what I looked like. I just wanted to survive and be around to see my kids grow up. I still want to do that of course and pray that I will but now I am looking in the mirror and not liking what I am seeing. Am struggling to get into jeans and don't feel very good about myself. Why do I beat myself up?
Anyway my lovely boss came to see me today and it was refreshing to speak about something other than cancer. I guess I should start thinking about when I will return.
Hope everyone ok considering the circumstances.
I've had another post disappear! As I said, the lump I found was just another a cyst which needed aspirating , along with the other 4 lumps that I hadn't even found myself! I've got 2 on the non bc side and three on the bc side. I haven't had them aspirated because I am now going to have the double mx I wanted, without any issues really. My surgeon just wanted to be sure that I understood what it entails and that my reasons for wanting it were sound (or sane!). Hooray!
The only thing is he wants me to have 2 seperate operations with rads (and 6 weeks) in between. He talked it through with me and I understand why he would prefer it, but he's also made me an appointment with the oncoplastic surgeon because I said my preference was to have double mx with immediate recon and another recon done if the first one was effected by rads. He said he would do this but is concerned about how long I would have to put off rads to recover from the very big operation. I'll see what she says before I make up my mind. I understand now that it's better to have 2 or 3 short ops rather than one very big one.
mandyp & QD the reaction I had was within first 5 mins of starting the Tax. My chest went tight and I was having difficulty breathing. I was the colour of beetroot. My heart was pounding and I was seeing stars. Almost passed out. There were 4 nurses running round me pumping extra steroids in and anti histamines. I was on oxygen with a nebulizer too and having SATS done. I was pretty out of it but my husband said it was like watching an episode of casualty. As I started to come round I felt sick and they pulled a screen around me as everyone in the room having treatment were gawping as you would! Took best part of an hour to recover in all and that meant not safe to carry on. Waiting to hear when appt will be next week when will discuss with Onc what happens next. Until then I have no idea. So no further forward
Michelle - that's totally wrotten. What happened? I've found Tax really tough.....and although i had 20% reduction last one,I still have felt pretty rough and got another skin infection. I'm seeing onc tonight to discuss number 6 which is on the 21st. What do you think they're likely to do.....when people ask me what's wrong, i say that i must be allergic to poison (no surprise there then!)
Cressida - hope you're ok......sending you big hugs.
Hamley - how did you get on?
Maire - good to hear that the rads are going ok. It's good to hear people are able to laugh given the circumstances....laughing is seriously good for us.....sometimes i think i've forgotten how to laugh and am only able to cry... keep telling myself to get a grip!
Sand - hope today went ok
Hugs to everyone else.....xx
Just spent 4 hours at hospital and didnt get chemo. severe reaction to TAX this time & took longer to recover so ONC decided to abandon. need to go back to clinic next week to discuss options for way forward - so upset now.
Maire - I too have been having eye problems all through my FECs (have last one on Tuesday). Eyes get very red and sore, I get blurry vision and my long distance sight has deteriorated. I wear reading glasses but even they don't seem to be working as they should. Mentioned all this to oncologist at FEC4 and asked if it was a s/e or permanent. She said and I quote"It's definitely a temporary thing caused by chemo. Don't go rushing out and having an expensive eye test because in time, once chemo is over you sight will return to normal. Don't worry about it." So I haven't, and will just wait and see how long it takes to get better. I know you are now on rads but it does take quite sometime for the effects of chemo to leave your body doesn't it.
Well the dreaded day has arrived and I have been tossing and turning all night. Thsnk you Sand for your support. Saw ONC yesterday and discussed the extreme pain plus other SE's I suffered with my first dose of TAX. Options were to have weekly smaller doses over next 8 weeks thereby increasing my total time spent being poisoned by 2 more weeks, or reduce next two 3 weekly cycles by 10%, or have no injections to boost WBC and put myself at more risk of getting an infection or finally the one I went for was a single one off injection to boost immunity with the full dose of TAX and lower the steroid doseage but take for 5 days instead of 3 plus up the painkillers. If that doesn't make things more tolerable this time then they may reduce chemo dose by 20% for final cycle. I hope that won't be the case because I would rather get the full whack and not worry that I hadn't given it all I could throw at it.
Hoping I don't have reaction to chemo drug this time and keeping fingers crossed for an easier ride than last time throughout next 3 weeks.
Good luck to all who have had or are getting chemo this week and glad to read your news Hamley about getting your preference for the double mastectomy. Not really something I would wish anyone to have to go through but you will have some peace of mind at least. I have had left MX only and advised no reconstruction for around 12-18 months at least because of possible RT damage to skin etc. Was told better outcome if delayed but different hospitals and surgeons have different opinions.
Love and best wishes to all x x
Hi. Not been on for a while as my son decided to share his cold with me!! QD - sorry for your loss. Cress - Sending big hugs and lots of positive thoughts. Shellebelle - Good luck for tomorrow, will be thinking of you. Saw onc today and because of se's she has decided to reduce dose to 90per cent for my second round tomorrow. Can't believe that it's 3 weeks since last treatment, it just seems to have run into each other. Hope everyone having treatment this week gets through with as little se's as poss. Sand xxx
Hamley - hope your onc listens to you.....am thinking of you..... let us know how you get on. And thanks for the tip on the gloves. will give it a go. Am back seeing onc tomorrow as they're getting worse. 😞
Just been talking t oa woman on twitter who finsihed treatment in 2011 - it's really extraordinary - she had both FEC and TAX and NO SIDE EFFECTS. She said 'I was as fit as a butcher's dot' - but with cancer'
Not only that, when they measured her neurophils atthe end of chemo, they were exceptionaly high, even for someone NOT on chemo - how weird is that?
She said that not only was she chemo resistant, but her tumour was too - it didn'r shrink on eithe FEC or Tax.
I had heard that there a few people who came through chemo with no side effects, but it's the first time I've come across one - thinking of what I've been going through, and what you've all been going through, it's hard t oget my head round..
I wonder if there's any connection between someone being resistant to chemo side effects, AND their tumour being resistant to chemo..
I'm about to go to my appointment with my surgeon to ask for a bilateral mx and to talk about the new lump on the other side, the rest of my treatment and reconstruction. I don't feel very confident that I'll be listened to because I think they just want to be able to tick me off the list of things they've got to do, but I've got to put my foot down as hard as possible. Here I go.
Maire - loved the mental image of the ant with its legs in the air!!!
So OH registers death and then makes his way to the funeral directors to be told that the last slot for next Thursday has just been taken!!!!
He will not hear of me delaying chemo for a week so the funeral is booked for April 4th. Its a hell of a wait but it gives us time to do things. I've started the order of service etc . Trouble is everything takes so long because Im so tired.
Mandy-Work was good. Thanks. Just spent a few hours there but am keen to build up work time for many reasons. Mainly I want a bit of normality. I was whacked last night but it was good to be tired through exertion rather than drugs.
Today at the radiotherapy unit there was an invasion of ants. I don't know whether the heat attracted them or if these ants want nuked. Either way I had a mental image of an ant lying on the trolley with two legs raised above its head getting its treatment. Now there's a Disney movie that hasn't been made yet!
Another gorgeous sunny day up here. Haven't had rain for a while and the garden's looking dry. Very unusual for March in Scotland.
Thinking of all the struggling Crackers esp those in hospital today. I just hope there are some entertaining fellow patients to keep your spirits up.
Maire, you made me have a coughing fit with laughing. I'll be sure to watch out for this potential problem with rads!
Mandy, have you tried using cotton golves to protect your poor hands? My MIL used to put prescription hand cream on at night with the golves over the top when she had probs and it helped a lot.
Wendy, congrats on finishing your chemo. Please help Maire shine the light to help guide us all back from the dark side.
Cybele, I can't believe another nightmare scenario has come your way, you've had it so rough. It must be hard to bear, but stick with it, you'll get there.
Lolly, thanks for letting us know about Cress, please send her love and hugs if you can. Good luck for the blood transfusion, let us know how it goes.
QD, I hope it goes ahead for Thursday and goes as well as can be expected.
Love and hugs to all, so many of us seem to need them at the moment.
It's not going too well for us crackers is it?
QD - so sorry you have to deal with what you have on.
Lolly - good to hear from you and thanks for update on Cress. At least Cress is Getting some relief. I hope your transfusion goes ok.
Cybele - I don't know what to say! Just when you thought weren't going to have to deal with another bl**dy fight!
Maire - close shave! What's it like being at work?
I'm sat waiting for husband to return with some more anti biotics as yet again my hands have flared up after the doxetaxol. I feel pretty rubbish although with the 20% reduction not as bad as last time. Still pretty groggy though.
Lolly-Thanks for the update on Cressida. Please tell her we miss her humour and hope she starts to feel better soon. Sorry you're having to have a blood transfusion. From what I've heard it makes you feel much better.
Oh dear, had a near miss today! Attended my daily radiotherapy appointment then quickly got dressed and headed back on the train to work (started back today on a very p/t basis). When I arrived at work I went into a cupboard to get changed whereupon I discovered tit hanging out of top. I didn't wear a bra as I want to cut down on any areas that might rub against my skin while having rads. Not having any support, tit decided to make a break for freedom. Luckily I had my coat buttoned up otherwise I'd have flashed mutilated tit to everyone on train and at work. Be warned.
Cybele-sorry to hear about your toothache. That is just too cruel. I'd have another bout of chemo rather than have any dental work done. Too horrible.
Wendy-Doing a wee dance of celebration in front of laptop in your honour. Just need to get through the yukky side effects and you'll be in your happy place. Even if the side effects are nasty, knowing it's the last time you'll experience them makes them much more bearable.
QD-Sad news about your mother in law. Hope you get the funeral arranged to suit.
Lilly-Try not to worry about Radiotherapy-it's quite relaxed and pain free.
Hope everyone else is getting by and enduring.
Hi me again,
I have heard from Cress and she is in hospital, she is in pain with her under arm, so been fed Anti biotics and morphine and was waiting to hear what surgeons had so say about it, so far they cant agree what is wrong so she is still on IV anti biotics which she says are finally starting to work and pain a bit better today.
will keep you informed if i can until she gets herself out.
I am here, just a bit quite, had a good weekend, but thought for a short moment i was going back to A&E as temprature went up to 37.5 but held on for a couple of hours and it started to drop again so big sigh i was in the clear for once.
Just got to look forward to tomorrow for Blood transfusion dont know anyone who has had one, so dont know what to expect afterwards, any one know ??
hope you ok Cress and surgens was able to help you, sending big HUGS ((()))
sending hugs to you all and thanks for the well wishes you all sent
just got back from dentist - not only is it real tooth ache, it is a big hole in the last tooth at the back, bottom right hand side of my jaw, and the nerve is irreversibly damaged and there is an infection.
There will have to be root canal work - my dentist is phoning my oncologist t oask if she is allowed tot ake the nerve out, and what antibiotics to give me. This would be horrible at anytime, but in the middle of the chemo cycle...
The one good point is that they gave me a Pegfilgastrim injection 10 days ago, to boost my white blood cells this cycle and stop me getting another infection - hah! - so presumably my neutrophils are a lot better than they would be otherwise. So hopefully the infection won't actually kill me, but it's getting worse by the minute, has been all day, and although they've put a temporary medicated filling in, it doesn't seem to be making much difference..
i am really starting to feel cursed - I thought everything bad that could happen to me during chemo already had happened - it seems not.
Some online research re chemo and dental problems reveals that chemo can cause something called neurotoxicity, whereby you get severe tooth ache, but it's caused by the chemo, not by anything wrong with your teeth.
On the other hand, this is getting more and painful, so it really feels as if there is something wrong inside my tooth.
Hamley, I keep looking on here to see if Cress has posted, because it's really worrying not to have heard from her.
I'm thinking she must be in hospital, which is probably a good thing, as she was in such terrible pain, and at least it'll mean she's finally being properly looked after, but I wish she'd post! Of course, if she's partying with Prince Harry, it's probably just hangovers that are keeping her off the forum..
Cressida, if you're reading this but not feeling up to posting, know that we're all thinking of you, and wishing you a very speedy recovery from the latest nightmare - and you, Lolly xxxx
Big HUGS to everyone who is suffering from the horrros of chemo today xxx
In other news, I've had pain in my jaw fror the last few days, and was assuming it was coming from a hidden mouth ulcer, but am stating to think it may be actual toothache, so I've got an emergency appoinmtent at the dentist at 2pm t ohave it checked.
Am deeply hoping that this is psychosomatic, or an ulcer... a tooth infection is THE LAST THING I need right now..
QD, sorry to hear about your MIL, you didn't need that on top of everything else. I hope you manage to arrange something soon. There aren't many good reasons to put it off but perhaps this is a good enough reason to delay chemo for a week; you'll be with lots of people so you want you blood to be strong enough to protect you. Take care.
Sunshine, I haven't heard of blood clots in chemo previously, just another horror to add to the ever increasing possible side effects. Do you have your chemo via a picc line or cannula?
Cress and Lolly, we haven't heard from you for a bit, I know it's really bad at the moment so I'll send love and hugs in case you're able to see this but not feeling up to posting.
I heard that Prince Harrys' new girlfriend is called Cressida, is there something you haven't told us?
Hi to all,
I hate monday mornings, think cos hubby not here, some days go so slow waiting till he comes home then the weekend flys by why is that?
iv got my 5th chemo fri 8th march, started 14th dec, got mixed emotions today, 3rd chemo was my worse emotionaly i just couldnt cope and didnt want to be here, after 6days in bed and some tabs got through, 4th chemo hasnt seemed as bad apart from had lot more trouble with my eyes bluring and headache for last week, they lowered one of chemo drugs last time as my bloods came back to low, got 2 small blood clots in right arm and chemo has become quite painfull, just worried what this 5th one is going to bring, cant believe come this far, i can now see a near end to chemo, `
Speak to oncologist or Bcn when you have some idea of dates for funeral they may be able to delay chemo a week I know not ideal but don't think it will have an adverse affect on treatment. How long are you usually poorly for after chemo ? If you feel ok after week one it would be ok to have funeral week 2 as long as you don't sit anywhere anybody with a full blown cold I would think. I still do normal stuff in week 2 if I am able
No she didnt - it was vey quick but....... if you die within 24 hours of being admitted to hospital the case is referred to the coroner who can request an inquest/post mortem. He is still making up his mind!!!!! As yet we do not have a death certtificate so cannot plan a funeral. Planning a funeral around chemo is - er interesting. Im in danger week this week so ideally would like it next week - which I dont think is feasible. So that means tht my next "good" week is the week of the Easter bank hol. Which means that its a long time to wait for my OH to gain closure. The other alternative is that I dont go to the funeral - but then I think he needs my support. aaargh!!!! suggestions on a postcard please!
That's good to hear Maire. I'll be starting the Tamoxifen soon, i think, and have 4 weeks of radiotherapy to get, when will it ever end!!!! How can you possibly know what is causing side effects when you have so much crap running through your body. Not looking forward to Tamoxifen but might be ok you never know!