Aurora don’t forget to let your team know about your weight loss, are you weighed at each appointment before chemo? I dropped weight during chemo too but it’s all back on now and a bit more 🐷🐷😁💕💕✨✨Shi xx
I don't blame you being nervous about using public transport. Our SEs are similar, except my appetite is up so I'm putting on weight- wish I could give you some kgs.
Good luck tomorrow x
good luck to those having treatment today. I’ll have my 3rd Paclitaxel/Carbo tomorrow and need to go to the hospital for my bloods today - as I live in London and usually rely on public transports to move around I am a bit nervous to do any unnecessary travel so will most likely take a cab to reduce risk.
Still trying to increase my food intake as weight loss has been bad and worried this could impact treatment.
Getting a bit fatigued now and thinking I need to go through 12 Paclitaxel/carbo seems daunting. So far side effects have been loss of appetite, some bone pain, tinnitus (from carbo) and some heartburn but still early days.
hope you all have a good day
Good luck Lady34 and everyone else receiving treatment this week. I had second docetaxel on Monday. Ive been given codeine this time (was told only to take ibruprofen last time, but it didn’t touch the joint pain). Also been given an extra couple of days steroids. So far, pains are minimal, so hoping for the best and keeping fingers crossed I don’t get the red hands and feet again,
did bloods today saw consultant getting cocodramol maybe wrongly pronounced it’s cocodomol combined with paracetamol to manage the aches. Mouth gel gelclaire plus a tablet to reduce inflammation in mouth 😁
Feeling better armed to tackle the T side effects. Advised to drink much more fluid to ease SE. Felt positive after so went food shopping. Morrison’s have cheap pork and brisket
Self islolating after tomorrow’s chemo. Already don’t answer the door to anyone 🤣
My priority must be to avoid infection I’m being strong and firm 💪Not seeing friends till this is well and over so around the end of April.
Going to tidy my cupboards declutter and plant veg veg and flowers plus fruit trees.
Will get a European Yew out of respect 😉
Tomorrow in Chemo room going to keep my nose and mouth covered with a scarf or my virus mask depending how I evaluate the situation tomorrow.
Night Night. Hugs to all. Will check in tomorrow. All the very best to our rocking group. Nearly at the end.
Also seeing the light towards the end of this chemo tunnel 🌲🛎🙏🏽💕🍀🍰🍰🍰🍰
As long as bloods ok round 5 will be a full dose - but the consultant has asked me to self isolate for the first week as they don't know what caused my infection last time and so much around, I seem to have become to postman's go to drop off point (apart from when my Sister in Law sent flowers and he threw them over the fence even tho I was in 😳🤣) so I'm not answering door - if poorly next round they may reduce the last one but want to give it my best shot! Felt great the last few days - I have lots of treats, a new audio book and a Lesley Pearce paperback so all good 😊 hope all goes well for everyone 💪🤞
Best wishes to the Paclitaxel/ docitaxel group tomorrow,
I have been a silent participant since last few days, will be having my 10th P on friday (if bloods are OK). They are going to reduce my steroid dose by 1/2 (thank God!), also having pins and needles in fingers (tips actually) and also planter aspect of foot with increasing tiredness and ache and pains (expected cumulative S/E).
So long as I don't drop things and can walk it should be OK.
My oncologist friend has sent me this about corona virus and patients with chemo (by cancer charity), I am forwarding it to you all. Also did you all know that our immunity will be back to normal only after 3/12 of finishing chemo (I was under the impression that as the WBC's would come to normal (2-3 weeks), we should be OK with corona virus). Ladies please do take care.
Love and big hugs to you all!
@madcatlady, good to hear the omeprazole works. I’ve been given lansoprazole to take daily, sounds similar so will hopefully work!
Well done on getting to number 5! I had mine last week, so only one to go too.
Hope the new medicines work for you on dealing with the nausea and reflux. I was given omeprazole this time as the gaviscon I'd bought didn't do a lot for the heartburn on the first docetaxel, and so far I've been okay.
Hey rizzer, MrsS1968, Lady34 and Adelemck
Will be thinking of the Thursday Taxel team tomorrow! One more down.
Lady34, glad you're feeling more normal.
Rizzer, how is the cording? It sounds horribly painful, and I'm sure massaging for twenty minutes must feel like torture ☹
Adelemck, sorry to hear you've been ill with an infection. Did you end up in hospital?
MrsS1968, you've probably had the same advice re. the tingling, so you may want to ring the chemo line if it carries on.
I'm now well into week two and avoiding everything...will go a bit stir crazy by the weekend, but I just want to avoid casa NHS again!
Had round 5 Docetaxel and round 2 Herceptin yesterday. Didn’t tolerate the 1st round too well day 6-12, really bad reflux and nausea, but have been given new meds this time around which will hopefully help. One more chemo to go...can almost touch the light at the end of the tunnel!
adelemc, rizzer and lady34
Looks like we are the Thursday Taxel team! Anyone else having Taxel on a Thursday?
I have weekly paclitaxel on Thursdays. Weekly paclitaxel is a lower dose than 3 weekly, so side effects not too bad. Mostly fatigue and aches. Although I am starting to get tingling in my finger tips x
Hi everyone hope you are all ok - yes I'm due my second Docetaxel on Thursday seeing consultant today and having bloods was really poorly 1st two weeks with infection but 3rd week felt really good 😊 so fingers crossed! My veins are still very sore but I can see the light at the end of the chemo tunnel! 👀💪
Chemo buddies Lady 34! Yes, I think paclitaxel and taxotere are more or less the same as they’re both Taxanes. Paclitaxel I read originates from Pacific yew and Docetaxel or taxotere from the European variety! Well, that’s my basic understanding anyway... X
Yayee Rizzer we’re together. Is paxclitaxel the same as T Taxotere? If so it really wasn’t too bad for me. Easy to say now because I’ve had good sleep this week 😉 Bring it on my lumps almost disappeared 😁🛎🌲
Hey lady34, feeling more human sounds like progress ❤️
Ive got my first paclitaxel on Thursday, assuming bloods taken today are ok 🤞 Xx
Is it just me or had anyone got chemo on Thursday?
Got through my first T 🌲 the Yew tree caused 2 weeks of not sure what but many bits of whatever that made me want to just stay in bed. The 3rd week’s been ok alert and feeling human 🛎🌲🛎🌲🛎
hugs to all
Oh and Bel, I sent you a PM about the exercises, but forgot to say that the physio massages continuously for for 20ish minutes, so perhaps we both just need to do any massage at home for longer, as clearly that’s quite a while for keep doing it 🙄
Welcome! Sorry to hear you have cording too.
Firstly, don’t let the fact that I’m being a wimp about the physio put you off. I wish I’d got help sooner and I’m sure it wouldn’t be half as bad if I had. Take some pain relief and definitely go, would be my advice! Their help will make all the difference if you’ve stalled a bit.
My physio says that cording tends to settle down over time, but that while it is, even if you break some cords, it can still re-form, hence the need for regular work in it. Good news you have full range of movement back.
She says massaging it directly is important, so if you can continue to do that you’re certainly doing the right thing. I didn’t massage it directly until she had, and that was a couple of months after the op I think.
She uses moisturiser and then pushes quite hard directly on to the cords in my underarm and rolls them under her fingers.
I did do exercises straightaway and still do now. Annoyingly I binned the exercise sheet I was given as I’ve now memorised them, else I’d have sent you the pics.
Will see if I can find it online and send details to you.
Good luck with it and feel free to ask any other questions.
take care Bel Xx
Not sure if they do portacaths but probably wouldn't think it was worth it for three more chemos. But sound good for longer treatments.
Adel - I hope all goes well for your next chemo.
I'm lucky they put in a portacath for me before my second chemo session. No faffing around with showers. Worth asking, but a bigger procedure than a PICC line.
No one's even discussed a Picc with me - my veins are shot - they couldn't get a blood sample from me last week even tried my foot 😔 hopefully will be ok for this week's Chemo - anyone else finding this panic buying frustrating! On the plus side it's a lovely day here so aiming to have a little walk x
Aurore - I too have been worried about risk of infection with a picc line. Also my upper arm has been aching as well as the lower so worried having a picc in will make it worse. Barts is a brilliant centre by all accounts so you are lucky to be having your treatment there.
On top of this anxiety about the Picc is the worry of having the first D chemo the day after the picc is fitted.
i am being treated at st bartholomews hospital (Barts) which is a cancer centre. This is where I go for consultations and treatment and get my bloods done too. I have never had great veins tbh and it has been difficult in the past to put catheter in. I had my first two treatments without picc line as they could not find me an appointment quick due to Xmas etc and I was anxious about having a catheter but I had no choice. I was anxious about the picc due to the associated risks of infection but it has made life easier.
You will be fine
Thank you for replying. Which centre do you attend? Is it at the hospital? Were your veins very sore before? I tried the wash last night and I felt it irritated my sore veins. I wish they had discussed picc lines with me at the start. I was hoping to avoid blood tests for a while to give my veins a chance to recover.
i had a PICC line fitted at the beginning of January. I was not told to do any prep beforehand and did not have the choice of 1 or 2 tubes (I have one). all was done in a very sterile environment. I attend a big cancer centre in London and get my bloods done there at the same time as getting my dressing done.
a few weeks back I had to attend a&e at my local hospital and was lucky there was someone who had been trained on using the picc line but I had to check as not all of them are and there are very strict protocols in order to avoid infection.
i think you can get a prescription for the waterproof cover but I ordered mine online - google it and it will come up easily.
all the best
Mini mad i didn't even know there was a choice of one or two tubes, so I don't know which it will be.
The fact that it won't be used for bloods is a bit of a blow as because of my sore veins I now dread even blood tests as they always struggle to find a good vein.
Can you recommend any particular make of waterproof picc cover for showering etc.
Shame they cant do your bloods thru your picc but assume they can give you your pre-meds and any medication you might need.
picc took about 40 minutes, all very clean and sterile.
i also bought 2 covers off ebay, you soon get used to it.
are you having just the one tube or two ? Mini mad xx 💖💖
Hi mini mad,
Thanks for your reply.
Strange that you weren't given a 'wash' to use before the picc line procedure. I called the chemo line at the hospital today for advice. They confirmed I need to use the wash for three days before but said perhaps not on my face, but on my hair the day before! I suppose all hospitals do things differently.
Presumably you didn't have any issues with it which is good to know, but you can't help worrying when you read about the various risks. I was a bit disappointed to discover that I can only have the chemo through it, but not the bloods, unfortunately, as they are not trained to do that at our hospital, which defeats the object to some extent.
Thanks again for replying. Fingers crossed.
i had a picc line fitted but wasnt given any kind of ' wash ' to use before ??
on the day i just had that area completely cleaned before they started.
maybe contact your chemo nurse just to confirm how you should use it, expect you were given a number to call if you needed advice over the weekend.
if you want to ask any questions about picc line just ask.
good luck , try not to worry, a picc line makes it so much easier for bloods and chemo.
mini mad xx 💖💖
I am from the March 2020 thread but I was reading through various threads last night and noticed you have had cording aswell. I had lymph node clearance at the beggining of February and although I'm lucky enough to still have full range of movement I have developed this cording over past couple of weeks. At my last appointment my consultant just said to try and massage it about 3 times a day and that should loosen it - doesn't seem to be making any difference yet (maybe I'm not doing it properly?) but I see you have been given exercises and then physio - although I don't fancy the physio as it sounds awful painful. Would you possibly be able to give me advise re the exercises? Private message me if that's easier.
Thanks in advance, and sorry ladies for jumping into your Dec 2019 group.
I am in a bit of a panic because I am booked for a picc line on Tuesday due to phlebitis in my veins. I am really nervous about having this inserted, and that is putting it mildly, as I have already been suffering from really bad anxiety since the start of chemo ( though I am sure most of you have as well).
I have been told to use this Octenisan wash all over for three days before and will start tonight. I was told verbally to use it even on my face and hair but the online it says not to use on the face, nose, mouth or near eyes which has worried me. Not sure now whether to or not.
I wondered whether anybody else had a picc line? If so, how were you instructed to use the wash?
Any advice would be much appreciated.
So sad that you feel you weren't really empathised with. My chemo nurses suggested the cocodamol. I had taken oxycodone (left over from surgery) with paracetamol one night and with ibuprofen the other night and it didn't really help. They suggested the cocodamol you can buy over the counter (£1.99 at Sainsbury's pharmacy) and it really did help. You might get more sympathy from your chemo nurse. Mine have been outstanding. I see the oncologist next week for the first time since I started chemo, but I think the nurses are better at dealing with the side effects as they do it more often.
Doctors can be really cut and dry with their approach- you need the treatment, get on with it, rather than taking the approach of let's see how you go and we can tweak things!
Exercise is so good for so many things (I am a physio), especially the head! The first step is the hardest, but do short bursts and work in with the fatigue x
Well done on managing exercise! It’s sunny today so I’m going to try and get out. To be honest, my oncologist yesterday was very perfunctory. I asked about better painkillers for the joint aches and mentioned co-codamol and was told just to take paracetamol and ibuprofen. Although she asked about my side effects and we discussed the side effects of letrozole (stiffness, joint pain, sweats, headaches etc), I felt there was little empathy. She just said I need to have this treatment and need to take the Letrozole. I do know a couple of people though who have come off it because they just couldn’t function so I guess if things are really bad there will be some sort of alternative offered. Hope so! Good to hear your friend is coping. The oncologist did say exercise really helps. I guess it’s like all these treatments, everyone reacts differently and it will be a case of wait and see.
Yes I don't blame you wanting to avoid complications. I would definitely query your eligibility as it looks like if they radiate the axilla you will be exempt from the trial, which wouldn't affect your care, your data would be excluded from analysis, which it might be anyway given the size of your tumour. I have worked in clinical trial before so understand the process.
Do you feel strongly about whether you want radiotherapy to the axilla? If so, it would be worth pointing out to the team that you don't mind if it excludes you from the trial. You d have the right to opt out at any time.
Do what is right for you x
Thanks for that. Yes my consultant surgeon said I was over the size but he still thought I could be included in the trial. I know he also talked about extending it to the armpit. I need to confirm with him because the oncologist queried it yesterday. I’m quite keen to go for it as I’ve read quite a bit on it and want to avoid some of the potential issues with the lymph node clearance.
I think docetaxel and paclitaxel are from the same family. I too have had lots of joint/ muscular pains with paclitaxel. Cocodamol helped with them. I was offered either 3 weekly, or weekly paclitaxel at a lower dose which is apparently better tolerated so I took that! I also have a day or two with a lot of fatigue, walking the dog one day was like wading through treacle. She has a one hour walk and I figure that makes me get out at least 3 days a week (although I can't pretend that her tummy bug prohibiting her walks at the start of the week wasn't welcome- the non walks, not her being sick!).
I haven't heard/ read much about the hormone therapy. I figure I would be going through menopause anyway with whatever side effects, so the therapy can't be worse, except maybe the length of time with the drugs? Have you discussed your concerns with the oncologist and whether there is anything to offset the side effects? I have a friend locally in her 40s who has been through all this, had her ovaries removed and is on letrozole. She is still running and going to the gym. I have been having more night and hot sweats recently which isn't too much fun, but the start of things to come x
Big hugs Lady34. It must be awful having a sore mouth. I just hope you manage to stay out of hospital and am keeping everything crossed x
I think Docetaxel and Pacitaxel are very similar? I’m doing ok. The first docetaxel initially seemed great - No sickness or weird head and draining feeling like I had on EC - but when the steroids wore off I had terrible joint pain - just everywhere including my jaw, so it was hard to eat. Then I got hand and foot syndrome for few days - very painful, like being scalded on hands and feet. That is resolving now. I saw the oncologist yesterday and she was happy to proceed with final two chemo doses. I definitely feel very tired and have struggled to get out for walks and exercise which wasn’t helped by not being able to walk on the sore feet. I’m worried about taking Letrozole which is for post menopause women. Been told I’ll need to take it for 10 years and I’ve read and spoken to some people who say they just felt like an old woman on it. I’ve already struggled with menopause symotoms for the past few years and oncologist told me those might be worse with the letrozole. I’ve been pretty practical and positive until now but worried about quality of life on all these different long term drugs.
Yes, my second docetaxel was on Monday. This dose was reduced further to 60% but I still feel like an alien has taken over my mouth.
But I did end up eating normally last time, despite thinking I never would again, so keep holding onto that 🤗
Elsiedog, I just looked at the protocol. You will probably have radiotherapy to the chest wall alone. axillary radiotherapy is not allowed on the protocol. It also says the main tumour should be less than 5cm for inclusion, but maybe they have extended that criterion?
I can't work out how to paste the link to the protocol here but I just Googles POSNOC trial and the protocol is in the Healthcare Professionals link. It looks a very worthwhile study x
Good luck with the exercises. They will no doubt hurt like hell, but if you suddenly twang like a guitar string, it will be worth it.
I had some soft roasted vegetables and a bit of omelette yesterday, and that went down okay followed by yoghurt.
I couldn't face Weetabix twice in one day!
I am similar except that my tumour was 4.5cm, 10mm met in the first lymph node ER +. They took about 17 lymph nodes but not all (to minimise chance of lymphoedema and they didn't look suspicious). I have had 3 x EC every 3 weeks and am now have had week 3 of 9-12 weekly paclitaxel. I will then have radiotherapy to the chest wall and axilla. I am 51 so either pre or peri menopausal so the discussion is to be had regarding whether I go down ovarian suppression/ tamoxifen or other route.
How are you surviving the chemo? x
Anyone similar to me? I’m 59. ER+ 7.5 cm tumour. 1 positive lymph node. Mastectomy followed by six chemo ( 3 x EC and 3 Docetaxel). I’m about to start chemo 5. I’ll be given zolendronic acid and letrozole. I’ve elected to be part of the POSNOC study so my understanding is that rather than having all lymph nodes removed I’ll be having radiotherapy to chest and armpit with follow ups.
as I understand it, people who have no adjuvant chemo are HER2 positive? I could be completely wrong, but they told me if I was HER2 pos I would have chemo pre op. I am Er + and am having adjuvant chemo. My tumour was 4.5cm but they got clear margins on the excision.
We will go into annual screening for a few years post treatment so won't be completely left hanging. But I'm in the situation where all the cancer has been excised, including the metastasis in the first lymph node, so chemo and radiotherapy is insurance to prevent recurrence as it's technically all gone.
I will never describe myself as a "survivor" and I will never feel that I am "all clear". I am terrified of secondaries, but that comes from being a health professional and seeing worst case scenarios.
We are all in different treatment plans because this disease varies so wildly even in minuscule ways. Keep trudging along, we were all one day closer to reclaiming our lives and our bodies, scars and all!
Big love on a beautiful, sunny morning (long may it last) ❤
PS something to laugh about, I was the youngest of 8 in the chemo bay and 3 of them, including their visitors, were discussing which funeral plan they had bought 😳😬🤣
i am surprised they did not do neo-adjuvant to try to reduce your tumour first in your situation mainly based on the size to try to reduce it - I guess it must be down to decisions made in different trusts and yes my view is that they should offer scans to everyone.
i am neo-adjuvant and doing my second paclitaxel/carbo today, it seems I had some reduction after AC (will get full report Monday) but I was disappointed as I would have liked more shrinkage (hopefully the second chemo will finish it off). I am being treated at Barts in London and they have said at the beginning that if there was any residual cells after surgery they would offer oral chemo. I am also TN.
This is quite a rollercoaster.
I was a bit nervous changing chemo last week especially as I had been told I could have a reaction to it during the first two - glad it did not happen and hopefully today will be the same.
I hope you all have a smooth day today
It's odd that they don't scan us isn't it! I'm adjuvent too - had full Mastectomy with clear margins but as I'm triple negative I can't have Tamoxifen or similar and they are doing radiotherapy as my tumour if 3.5 cm was close to my chest wall then as you say fingers crossed! Looking forward to making up for lost time when the treatments are done 😊