Firstly,
It is my absolute pleasure and delight to award the badge and certificate this morning to Esther c.
For bravery and fortitude in completing the chemotherapy marathon.
Congratulations.
To everyone asking about Roberta, I am pleased to say the antibiotics seem to be working, and my surgeon was happy to let me go home.
So I am on track for my final Tax on Friday.
However, this morning, in a chemo fog, I cracked my head on the very ornate front door handle, and now have a hole in the middle of my forehead! You just couldn’t script it could you?
I must be missing extra holes!
Truey - enjoy your spa day. It’s well and truly deserved.
RobinJ - the breathlessness and leaden legs are the pits. I can only say that you should just rest, rest and rest some more. I have found it less after Tax 5, but not until week 3.
Wtp2016 - I have only had the flushes at night. but then I am well past normal menopause. I hope it imporves for you.
EggG - please don’t worry about the finish line being late. I will still be here, no doubt whinging about my radiotherapy, and then whatever hormones the oncologist decides to inflict upon me.
I will be here to award the badges and certificates until all of us have finished the chemo.
Don’t worry Egg. We are here for you as long as you need us. Fen Hen the party is a little quiet at the moment while we cope with our fatigue. It will liven up later. Dawn thanks for the advice re picc and c.t. and radiotherapy. Unfortunately I saw it too late! I actually asked to keep the picc becaure I thought it might be needed for the ct. This is because the mri and picc didn’t go that smoothly yesterday. Firstly my mri was delayed because two emergency babies went in before me. I felt sorry for the poor little things having to listen to those awful bangs and noises. Then a very sweet but not very competent young male nurse tried to cannulate me. (Even though I had kept the picc line). It was the most painful cannulation I’ve ever had and it failed. He withdrew the needle and dark red blood shot everywhere. It feels like hand has been hit with a hammer. Then he got an anaesthetist (there to do the babies) to do injection through my picc line instead. Had mri which was challenging - loud, long and uncomfortable. Went up to chemo ward to be flushed and dressing done and told them I had ct coming up as didn’t want another painful failed cannulation. So picc line is still there. But worse! Different nurse did dressing. She has positioned it so that there is no way I can keep it dry and wash underarm. And the dressing is already peeling off. Just hope radiotherapy people can sort it out tomorrow. Sorry to moan but it helps to have a good whinge. I do love the NHS and appreciate everything they are doing for me really. Hope everyone has good days. This teddy bear has jelly for legs at the moment. R x
Jackie glad to hear about Roberta and that you are back home but sorry to hear about the hole in your head! The badges are great and you will award yourself one soon. Fantastic. R x
Warriors,
Had chemo 6/6 yesterday with Herceptin and Zometa, apparently its only available for primary BC in some areas and we are one. Steroid insomnia and some joint pain, mainly in previously arthritic hip - has anyone else had this where Docetaxal seems to pick on the weakest joint? I have no dates yet for rads and in for the long haul as 15 more Herpectins 3 weekly so I don’t think anyone needs to worry abut beng left behind, we can all continue to suppport each other long beyond the last chemo.
Very best wishes to all of you Xx
I’ll be in the late finishers group too! Had 6 chemo now just one with herceptin and perjeta left. Surgery next but don’t know what yet. MRI at some point. Rads after that and then herceptin for the year. I WILL get my certificate one day!!
Oh Robin, that’s rubbish, so feel for you xx. I do hope you get it out very soon and your hand recovers quickly xxx
Jackie you have been in the wars, great that Bob is getting the message and getting better. Heads seem so much more vulnerable with no hair, hope it’s not too sore ?
Take care, we will all get there, and so worth it for getting rid of the b****r xx
Evening lovely teddies!
Jackie - glad to hear that Bob & Roberta are getting better - you’ve had a particularly tough time and it’s such a slog even without the added “complications”. I know it sounds cliched but this is all making us stronger - even if it doesn’t always feel that way.
Robin - this is the place to come for a moan and quite rightly so, it sounds like quite an ordeal! I think we’re all just getting fed up now and as much as I feel like I’m being ungrateful when I moan, I think we have earned the right as this journey isn’t easy. I hope you feel better soon.
Egg - no injections on weekly paclitaxel - my onc said they weren’t appropriate for this type of chemo. When my neuts dropped, he lowered the dosage and said he’d rather do that and try to get to 12 than have higher dose but have to stop at 9 due to neuts getting too low.
Re steroids, I get some in IV as pre-meds- not sure what the dose is though. I get steroids, piriton and some sort of antacid as pre-meds in IV just before the taxol. Each take about 10-15 mins to go on then the taxol takes an hour on IV as well. The piriton makes me pretty drowsy, some people actually fall asleep. The steroids woke me up early the following day for the first few weeks but I now feel like I’m getting immune to it or maybe the accumulation of tiredness is counteracting them as I seem to sleep better. Or maybe it’s the lower dose! So no meds to take in advance nor to take home with me.
I hope you find it easier than the 3 weekly. My BCN said it’s kinder and referred to taxotare as “just plain nasty” in comparison. Oh and my hair is def growing back!! A bit bald on front but can’t stop stroking it!!! How’s everyone else doing?
Good luck to you all!! Can’t wait to join the party xxx
Morning all, I am loving hearing all that are graduating, it brings a smile to my face each time one of us gets across the line!
After some advice/thoughts please teddies, had an onocology appointment yesterday that has left me confused, but I do seem to recall someone else on here talking about the drugs but not sure who and even if the indications for the treatment were the same. I had assumed and previously been told that i would go onto tamoxifen as strongly hormone receptive 8/8 and pre menopausal. However now been told that current evidence suggests ovarian suppression is recommend and advised to start Zoladex to stop oestrogen production from ovaries and Letrozole to block enzymes that can change other hormones from fatty tissue to oestrogen. I understand the principle but unclear if this is considered standard treatment as i thought from my other reading tamoxifen was standard treatment? Does any one have any experience of this? I also asxed about a baseline DEXA scan and was told this was not indicated due to my age - i thought any one starting hormone therapy was offered one??
Off to try and enjoy the sunshine while it lasts, much love to all. Looking forward to hearing about the next round of graduates! xxx
Suze,
Go chemo buddy! Look forward to hearing how its gone. Sending positive vibes to you and all others X
To Slowski
For successfully completing 6 sessions of chemo, and coping with the steroid insomnia and joint pain like a true warrior, I am delighted to award the badge and graduation certificate that such bravery merits.
Congratulations!
Awww thanks Jackie, you’re so kind and thoughful to us all X
Hi Lighthouse, sorry I can’t offer you any insight re hormone therapy. I have just completed 6th chemo (of probably 8, so 2 more to go potentially, but it depends on my toxicity the onc said) and then I will have surgery in the summer and radiotherapy in the summer/autumn all before starting what I was told would be tamoxifen for 10 years. Maybe they are suggesting the treatment they are for you if you are very young? I’m 45 so I suppose I would’ve been heading for the menopause in the next 5-10 years anyway although I think with my hot flushes, night sweats, grumpiness and zilch libido I might be there already!!!
Egg, I had a picc line put in this week, even though I’m so far into my treatment, as after I had ec1 through a cannula 3 weeks ago, i still have a sore, bruised arm, and it’s my good arm going forward (will be having axilla clearance in other one). It was fine, and after the first night of tenderness, feels fine too. And it did make treatment easier yesterday. My boys won’t look at the picc though - I think it’s the first visible sign they have that I’m having treatment as i still have head hair and a largely happy face when they are around! I worry I’m protecting them too much, but don’t want them worrying about me more than they are. They are starting to struggle a little - I think it’s been going on for so long already - 4 months is a long time for a child I think.
Is tomorrow really your last tax Jackie? I can’t believe it. I think I feel as excited about it finishing as you must be! Your poor body needs abit of a break!! I hope it all goes well and your final side effects manageable.
X
My oestrogen was 7/8 Lighthouse - don’t know if that affects treatment choice?
Blue - good to hear about the PICC line - I have been resisting it but think it will go that way. Like you my boys are starting to be more worried by it all and it’s sinking in for them more now - things having to be postponed because I haven’t been on “good days” and then seeing me when I have been very unwell. They react in different ways though - my older one has become a perfectionist at school but the little one has been acting out by talking in class all the time and arriving late to lessons…never mind - only a few more weeks until the holidays ! And then this will be hopefully sorted by start of new school year!
Slowski and Suze - well done for finishing!!!
Yes, I feel the same Egg about the worst being over by the start of the new school year and have marked it as a positive point in the future - a new beginning. Although i imagine my radiotherapy might still be ongoing, which obviously isn’t a walk in the park, but it’s hopefully better than this!
My boys talk about each stage of treatment to come and what it entails, focussing on really odd things like having a boys night in with their dad whole I’m in having surgery, and the fact that I’ll be getting tattoos (cool!) with radiotherapy. I think these things stop them focussing on the gravity of the situation but know from their behaviour and emotional outbursts that they are struggling a bit now. They frequently talk about when its all over - my eldest asked yesterday what we will do when it is finally over. He suggested a holiday - all inclusive to the Caribbean!! I told him that treatment might be over but our finances won’t have changed, so how’s about a cottage holiday in the UK at October half term instead!!!
Doesn’t an all inclusive to the Caribbean sound like paradise though? Under one of those massive straw umbrella things I see on pictures to hide our bald heads!
The Tax Teddies hit Tobago ? No red cocktails though - it reminds me too much of FEC!
I think I’m going to use that as my positive visualisation next time I’m doing chemo. ?
Evening all - and congratulations to Suze and Slowski for reaching the final stage of chemo, and getting you graduation badges. Hope the SEs are mild/ under control.
Jackie - glad to hear that Roberta is being beaten into submission by the antibiotics. As Friday is graduation day for you (at last) does this mean you have to award yourself a badge and certificate?
Robin - OMG not you too! The worst cannulation I’ve ever had was done by the MRI technician last time I had a MRI scan. She was very nice but made a terrible mess of my hand. By the time I got home it was all bruised and swollen, and I thought it was infected. Fortunately it wasn’t, but it took weeks and lots of Heparinoid cream to put right. Hope the radiotherapy planning went more smoothly and that they sorted out your PICC. CT scan is easy compared to MRI - you’re lying on your back, there are no noises as though a gang of workmen are building a new road in the room, and it only takes a few minutes to pass through the big white doughnut!
Lighthouse - I am on Letrozole (AI) as post-menopausal so not sure whether you have Zoladex instead of Tamoxifen, or as an extra thing with it. There is a brief overview of hormone therapy on the Cancer Research UK website but it doesn’t really explain. Here’s a link to the Cancer Research UK information:
cancerresearchuk.org/about-cancer/breast-cancer/treatment/hormone-therapy/about
Blue2 - I am ER+ 7/8 too. This is the 'Allred score, based on your biopsy results - the higher the score out of 8, the more likely you are to benefit from hormone therapy. The score doesn’t affect the type of hormone therapy, but it does affect the decision over whether you should have it. If you have a high or moderate Allred score (anything over 4/8) it is assumed you would benefit from it. As a general rule, if you are pre- or peri-menopausal you get Tamoxifen, and if you are post-menopausal you get one of the aromatase inhibitors (AIs), usually either Anastrozole or Letrozole. For further information see:
medical-dictionary.thefreedictionary.com/Allred+scoring+system
Ebim - I haven’t had a bone density scan and it doesn’t look like I am going to get one any time soon. I asked the oncologist about this when I went for my 3 monthly review on Monday. He is of the view that I won’t need it for at least 5 years, given my age (53). I will have regular blood tests to check calcium levels, which at the moment are normal, so combination of diet and calcium/Vitamim D supplements are currently working.
I am in the hot flushes/ hot and cold club as well as some of you. I thought I’d done with all that but no, the last lot of chemo seems to have triggered it, and the Herceptin and Letrozole are keeping it going.
It’s not too bad to be honest, because I only get the flushes two or three times a day, but it’s annoying the way it suddenly happens at random any time of the day or night. At</span> night I have found the best things are loose lightweight pyjamas and a light summer duvet with a throw on top. When you get too hot you can just remove the throw from your side, when you get too cold you can pull it back on again.
To Suze 123
For bravely and successfully completing 6 rounds of chemo, complete with stomach cramps and marshmallow tongue, I am delighted to award the graduation certificate and badge given to all Tax teddy warriors.
Well done!
