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, 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
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.
hi my last post has disappeared!!! hope this one makes it.
Hamley - great news about the cysts!
Cybele - glad to have beeen of service re the perfect murder!!! and yes im putting on weight too. Both of my colleagues put on between 1.5 - 2 stone!
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
Michelle
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!
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.
Thanks to all for your comments, I can’t express the relief I felt after my appointment.
Cybele, please don’t indulge in the elasticated waist band, it’s the quickest way down the slippery slope!! I know how tempting these comfy clothes are though. I’m going to try the 2 day diet, I’ve already ordered the book from Amazon.
Shellebelle, please mention the lump to your onc even if it seems to have gone away. I thought my tumour was a cyst and didn’t mention it. It’s probably nothing but be on the safe side. I had a little lump in my WLE scar and it turned out to be a bit of a disposable stitch that had got caught up and hung around too long. It cleared up of its on accord in the end.
Maire, Cybele I was told by my onc that chemo and rads together increased my chances of surviving beyond 10 years by 7-8%, this with my young age (all compliments are accepted!) meant this was recommended. My tumour was grade 3, my Mums was grade 1 and she didn’t have chemo because she was 12 years older than I was at dx and chemo would have only improved her chances of survival by 1-2% which meant the risks & SEs of chemo outweighed the potential benefits. I asked my surgeon why I didn’t have a CT scan, he said that because my lymph nodes were clear there was no point as any nasties would be at the early stages can’t be identified when they are so small and therefore invisable. It’s all very complicated, but as Cybele says even the small % is significant, we’d hate ourselves if we didn’t do everything possible then had a recurrance.
My Mum’s been staying with me for a few days but went home today. She lives a long way away from me and I miss her. She feels guilty about not being able to be with me more often and even though she knew I’d lost my hair, she was really upset to see me in my chemo head gear. I don’t think she had previously realised how much the chemo has taken out of me and she cried which has been one of the most upsetting things so far as she’s not usually given to tears.
Marie ~ the reaction was something I certainly wouldn’t want to experience again, nor would I wish it upon anyone else either. It was classed as severe, but I didn’t lose total consciousness and end up in full anaphlyactic shock. I still feel pretty crap even today, 2 days on so not pushing myself to do much this weekend.
Hamley ~ yes, you’re right, I will mention the bump on scar, even if it’s disappeared by Wed’s appt.
Cybele/Marie ~ the information I got about the benefits of chemotherapy for my particular cancer were provided by my Oncologist who used the Predict Tool Predict Breast as a visual reference. It is only a guideline, but made my decision as to whether I should have chemo and hormone treatment or not a bit of a no brainer. It could increase my chance of survival from 1/3 to 2/3 at 10 years. This was based on me having the Docetaxel, so I’m not sure how it would differ if I’d only had 1 dose of that and had to revert back to the EC chemo for the final 2 doses.
As for losing weight… Meh! All words such as ‘diet’ ‘low fat’ ‘fasting’ ‘calorie controlled’ or any one meal that involves a list of ingredients longer than what’s on my current total weekly shopping receipt and takes longer to prepare than an episode of Emmerdale, just has a negative effect on my brain. I’m a lazy cook and food needs to be quick, simple and tasty with as little washing up to do afterwards for me to stick to any plan. However, I do know I can’t sit on my backside and trough my way through the contents of M&S foodstores either, so Rosemary Connolley may revisit my kitchen in paperback form once more!
I have escaped the hospital. I have tried to read your posts and I am very touched by all the concern. I have missed you all. No internet access at the hospital. This is prob because they fear that someone like Cybele might blog about how terryifyingly sh#t the place is. I am still very poorly, so can’t write long post. Also can’t see straight cos of the morphine.
Having bone scan Mon and seeing onc on Tues. Thankyou all for your kind thoughts and wishes,
Hi ladies, sorry to hear about all the crap everyone going through, Cressida , glad your out of hospital and hope you feel better soon , QD , I’m sorry about your loss , cybelle I’ve had a tooth problem too , had mine packed and just hoping it calms down
I’ve just had tax and C no 4 , so feeling abit rough and teary which I seem to be alot at moment , it doesn’t help that my sons dad seems to be intent on starting an arguement over our son , I’ve also had a wk back at home as my mum got gastroenteritis on sun night so I had to move out to hopefully stop us from catching it , so I’ve had to cook clean wash and look after me and my 3 yr old, I wish I could do the things I used to .
Ive been doing cold cap so still got a covering but need to wear a hat out as I’m sure I would get stares as I have to do comb overs , I’ve also got my eyelashes and eyebrows , when did everyone’s come out , and now I’ve mentioned it I’m sure they will propell out of my face immediately , is everyone getting abit weary of it all now as I seem to be getting alot of negative thoughts, which I havnt had before , maybe I’ve been in the nice warm big duvet of denial
lv to you all xxxxx
Posted but it disappeared. Cressida, I am thinking of you and hope you get the all clear with the bone scan. Hope you get some help with the pain too. So worrying. xxx
Cress - WELCOME BACK!!! so glad to hear from you, and that you’re home xxxxxxxxxxxx MASSIVE, MASSIVE HUG xxxxxxx you have been very much missed
Lisalouw - sorry t ohear you’re having such a rotten time, MASSIVE HUG for you, too - this too shall pass xxx
I think we’re all getting pretty weary and completely fed up with the whole thing by now - i just keep thinking ’ I want my life back, I want my life back’, but it’s not long now. OK, there’s still rads to come, but by the beginning of June we should all have the hospital out of outr lives in the sense of being tied to it in the way we are now - sorry,I’ve just realised that may not apply to everyone, I know some are having chemo before surgery, and others have got more complicated treatment plans.
But at least we’ll all be out of the chemo woods fairly soon. When I was in the middle of the side effects of FEC4 last week, I couldn’t even bear to think about having to do two more, but now I just keep thinking fEC5 on thursday, and then after that ONLY ONE MORE, and that is starting to cheer me up no end.
love and hugs to all xxxxxx
HI Michelle, so sorry to hear of your bad reaction during Tax, what a b***er!!! Hope you get something sorted out on your next appointment. Cress so glad your out of hospital at last, and sorry you’ve had such a rough time, we all feel for you. Had my reduced Tax on Thursday + Herceptin, now awaiting se’s that kicked in on third day last time. Already got stomach ache even though prescribed Omeprozone this time. Also put on 6lb again overnight, did send off for two day diet book though, so have been leafing through it, don’t know when I’ll feel up to starting it though probably after last Tax which should be on 28th March all being well. Have a great Mothers Day one and all, we WILL get through this lol xxx
Sand, I put 4 lbs on overnight with each taxotere/herceptin treatment. Think it was fluid retention.
Wee flurries of snow up here along with some sunshine.
