Hi Mrs S and Rizzer
no Filgrastim on Paclitaxel... will have repeat bloods next Friday and if 1 or more then will have chemo. In this world with corona, I should b glad (in a way), that I did not have it.
getting on with life now...
listen to music
do some sketching
love of all
Lovely puppy video Rizzer,
my chemo go cancelled today as Neutrophils quite low😱😱
I hope they come back up soon..
No idea if this will work @Spinks, or if you even like dogs 😂
Spinks that's fantastic news!!! Do you have any other treatment to come or are you completely done?
I'm in full on hermit mode, as I suspect we all are.
Take care x
Last chemo today and picc line coming out! Woooooohooooo!
Stay safe and isolated, focus on all the amazing things humans are doing in response to this crisis x
B4 I thought you might be!
Hopefully this thought might cheer you up. At least we are mid way through. I pity people newly diagnosed facing no chemo because of the risk of getting coronavirus. At least our long term outlook after chemo is good, better than without 😬
We can do this. Nearly there. Just have to isolate. My daughter finishes school tomorrow. My husband is in the spare room and prepared to move to friends over the road if we need to self isolate for 12 weeks. We can do this.
Take care. Have a break from the news, social media etc. As medical people we want to know all the facts and sometimes that's too overwhelming xxx
Yes Mrs S,
im a doctor (Obs and Gynae), Wales is such a lovely place with lovely people.
Currently there is a lot of uncertainty with regards to Corona virus and us having our treatment, I’m having my chemo tomorrow, but getting anxious if it will happen or not?
I hope the corona goes away quickly... my son who is back from uni has sore throat... and it adds on to the anxiety, though I have quarantined him.
Never in life I felt so vulnerable/ out of control....
sorry ladies I hv been quite low today!
apologies if I it makes you all anxious..
I teas that paclitaxel can give you a hoarse voice and I had that for a couple of days. I imagine similar with docetaxel.
Might be worth asking your team x
P.s has anyone had a husky throat and a dry cough on docetaxel or steroids? Think it is a side effect. Someone mentioned this I think.
Thank you for your replies Madcat lady, Rizzer and Mrs 1968.
Your input has been really helpful. I think the effect of these awful drugs is just horrible. Well I took my last two doses for this cycle today so I hope and pray the drugs are out of my system soon. I am on three weekly cycles Docetaxel only. Two more to go. I am
late with the first as I had an infection which has put me behind. I did take larazepam a couple of times but they didn't work very well I preferred zopiclone which I have taken a few times over the weeks but wasn't sure whether it was ok to take them. I will check with the chemo suite if I don't get any sleep tonight. My anxiety isn't helping.
At least I know I am not alone with these issues.
I too sympathise about the steroid-induced insomnia. It wasn't great on FEC, but the steroid dosage has doubled on the docetaxel cycles with much more anxious and fearful wakefulness.
I found I coped better psychologically on the second docetaxel cycle, partly I think because I knew what to expect. I went to bed as normal, and set a time in my head that I would get up if I found myself still awake. I also tried to consciously empty my mind and think, 'I'm not going to think about x or y now, but will do tomorrow.'
I didn't reach the time in my head on any of the three nights of taking the steroids. I didn't sleep as much as normal, but accepted that.
I don't know whether that helped me to feel I'd got some control (although I knew I might just simply wind myself up by clock-watching), but deciding when enough would be enough maybe and lessened my feelings of night-time paranoia and fear from the first docetaxel cycle.
I also keep reminding myself (constantly!) that's it's only three nights, now two, now one.
Havings things churning around in your head during the wee small hours is rubbish under normal circumstances, and these aren't normal times.
Glad to hear you got your last dose of PTD okay, but it sounds like a rather subdued environment, and no clarity about what happens next for you.
I'm hoping they'll go ahead on Monday as it's my last chemo, but I can't help worrying that they'll not bother with it. As I won't be offered anything else (I'm TN), I want to have all the six sessions, even though the docetaxel has been at reduced doses.
It will be strange sat on my own as I've been fortunate in having people with me. I just feel desperately sorry for those starting chemo now as they'll be anxious enough without having friends or relatives in with them.
Same with admissions - my hospital, like most others I would imagine, have said no visitors will be allowed onto wards, other than essential ones such as birthing partners in the labour suite.
Sorry to hear about your experience with the steroids. I’ve certainly struggled with them - and I know others have on here. Are you on Docetaxel/paclitaxel now? How many more cycles do you have to go?
To begin with, on my cycles of EC I thought it was stopping the steroids that gave me the worst effects, but by cycle 4 I took no steroids at all before or after the infusion (just what was administered via IV) as it seemed that taking them full-stop was the cause of some very unpleasant psychological effects - at least that was the case for me. It made no difference to my nausea (which was never bad) whatsoever. And in any case, there are other drugs to take for nausea.
I’m now on paclitaxel, and am given no steroids, before during or after chemo. According to my oncologist, he would not routinely prescribe them for this drug, anyway.
So, it seems there is a big difference between how some of us are receiving Docetaxel/paclitaxel and others. I think when I came on here and asked others about it at the time, frenchie (sorry if it wasn’t you, frenchie!) also mentioned that she was having her treatment in France, and wasn’t being given steroids to take home either. So I knew from this and from talking to my oncologist, that levels of steroid dosage are not cast in stone.
I’m sure there are variations in what is prescribed, due to our chemo dosage and our different types/stages of BC, but my point is, it is certainly worth discussing with your team, your need to be taking as many steroids, if taking fewer would have possible benefits for you. Don’t keep suffering ❤️ if there’s a way they can help lessen steroid-induced anxiety and insomnia.
Sending you a big hug my love Xx
Adel - I have managed the pain from the stomach injections by sitting as still as possible in a comfortable chair as soon as I notice the first twinges. I once was on a walk when I got twinges the first time and I think that made them worse. They seem to last a couple of days.
I am currently really struggling with steroid induced insomnia after chemo today. It is the early hours and I am still awake which is making my anxiety worse. Tomorrow is the last steroid day as i take them for three days from the day before chemo, though I actually had it as an injection today as forgot to take the tablets yesterday. So I have one more day of steroid tablets tomorrow. Wondered how others coped with this as it makes me feel really anxious.
Adele the pain is awful from filgrastim. I do sympathise.
B4 are you a doctor? When you mention training I wonder.
My husband did a year in Liverpool in 1998, then we moved to Swansea 1999- 2003. I loved Wales. Still have friends there and visit when we can.
Not that I've been for a while but yes Chester still good 😊 thanks for your tip I had antihistamines in so taken one to try
Adele like everyone else even I am hoping (fingers crossed) that corona goes away soon and our treatments continue without any hinderance. I remember Chester... the shopping centre used to be so good then (2000-02)...
Small world b4 my hospital is glan Clwyd although my chemo is in Wrexham and my surgery was Chester 🤣 joys of living on the border my Radiotherapy is in Glan Clwyd so might manage a couple of beach walks too
Along with paracetamol or cocodamol (which ever you take), you could add an antihistaminic as well like cetrizine or Claritin (loratadine) as the speculation is that the pain is also associated with histamine release. I can understand when you say "no shops have it either where we live" as I have lived in that beautiful part of the country as I was there for 2 yrs (north Wales- Glan Clwyd Rhyl and Wrexham Maelor H), being a Welsh trainee.
Im sure if you have run out of the analgesics then some neighbours could lend you some paracetamols. The only re-assurance I can give you is that it will definitely go 🙂 as soon as your GCSF stop 🙂
When is your EC or AC regime finishing??
Loads of warm wishes
Hi Mrs 1968
Its the filigstram injections causing pain in my spine and gives me spasms- I do take cocodeamol sometimes but have to be careful as I have crohns aswell - I have oramorph if it gets too much it only lasts a couple of days and I have had it almost every cycle I'm about to run out of parecetamol and our chemists just closed today as can't cope with demand- no shops have it either where we live - I could call the hospital if I was stuck in sure 😊 I also have a lovely heated pad which helps a lot
I'm also walking up around 3-4am. Stressful times for travel agents, for sure!
We can do this. Hello, if we can tolerate chemo, we can do anything.
Is your back pain from the chemo? I have joint and muscle aches and find cocodamol helps (take your temp and don't take any extra paracetamol as it is already in it). You can get it over the counter x
Debolina, Myself and my husband are self isolating now. It is all so scary. I have done an internet shop but the earliest booking was this saturday so my daughters have been dropping bits of shopping on the doorstep. Had chemo today and Nobody is allowed to stay with you now at our hospital. It was horrible as the nurses were rushed off their feet and you felt very vulnerable.
I am worried about not being able to sleep tonightwith the steroids.
I have also moved husband into the spare room ( but this works for me as I seem to wake up at around 4 am ! So can listen to a book without worry - my daughter a nurse is also staying away and I miss her 😔 must be very stressful being a doctor at the moment! I'm normally a travel consultant and know my colleagues are having to help my clients (they wouldnt allow me to work from home ; bet they wish they had now!) being extra careful after last cycles infection another very sore mouth and back pain this time but copeable at the moment! Haven't heard about my blood tests/ appointments but going to wait and see as mine 1st/2nd April had a real wobble last couple of days but feeling brighter tonight after chatting with my daughter and brother ☺️
Hi Madcatlady (still no quote function)
I had nurse and bloods on Monday and was given a note about future appointments being by phone. Was a bit unclear about when/how they would be doing the blood test next time as I should be moving to just Herceptin but I couldn't follow how surgery fits in with all that and they didn't seem to be all that clear either(!)
Did manage to do my last dose of PTD today which I am glad about. We were all sat with a chair between us and there was a disinfectant of the chairs between each patient as well as the usual hygiene. The usually rammed blood test waiting area was empty and reception much quieter than usual.
Since Sunday I have been socially isolating ie not going anywhere except walking the dog, no visitors in my home, just my husband and daughter. I even cancelled my cleaning lady. It's bloody hard work doing the cleaning with fatigue, even doing a little bit every day 😬.
I still have to go to the hospital for weekly chemo. I usually get a lift there and back but am wondering if I should drive myself, once the effect of the piriton has worn off 🤪
This is a nightmare situation, especially as my husband is a doctor and exposed to all sorts. From tonight he is going to sleep in the spare room and use a different bathroom to me. I'm trying not to get too anxious about it all but it's hard x
Helloooo ladies......sending you all much love......I have just returned from my 'steroid meltdown' to find out that the world has changed so much in 4 days! Michael and Eoin told me no news and I couldn't even lift my head to look at anything online!!!!
My district nurse told me today when she came to change my picc line that other people on chemotherapy in my area are simply not going out unless its for a walk and not having any visitors into their homes......have any of you decided to do things differently?
Much love and relief from symptoms to you all - Debbie xxx
What a lovely pooch, B4! Love the picture.
I met a friend this afternoon. We had a short walk, then sat in our own cars, parked at my friend's suggestion so that we could talk, but at a suitable distance.
It may have looked odd, but it was so nice to get out and chat!
As my next treatment is on Monday I'll be at home from then on.
I've still got to go to the hospital on Friday for the blood test as my local cottage hospital has stopped doing them because of coronavirus, but the appointment with the oncologist will be by phone.
Has anyone else been told similar?
LOVE the doggy pic ❤️
Yes, we haven’t really worked out how I would self-isolate within the house if anyone else in my household gets it...or if we just need to accept there’s not much more we can realistically do to avoid infection at that point.
take care everyone X
Hope you feel better soon, gaviscon will help and also omeprazole (your team should be able to prescribe), in addition have small quantity frequent meals, avoid spicy and hot food, wine, cheese etc.
With re to corona virus the fear is very real. I thought of sharing the funny side hence posting a picture of my dog - being mindful of being near me (immunocompromised high risk patient).
NHS England has issued some guidelines which do suggest that carers of vulnerable people (like us), could work from home. It is quite a worrisome situation as though we are house bound (Im sure all the chemo sisters are staying at home and avoiding socialising), but other family members would have to go out, do the shopping, school runs, walk the dog etc etc... how do they prevent getting corona virus and in turn reduce our risk is going to be extremely tricky.
Take care everyone
For me it's a burning, acidic feeling just below the throat (upper oesophagus area) and gets worse when I eat spicy food or have a sip of wine.
The NHS website will give you s list of symptoms as people can vary. I got it when I was pregnant! X
Thanks MrsS and sorry to hear you get this too. Does it hurt in the chest area too? Sorry I'm sure this is probably really obvious but I've never really had it before and the 'noia is setting in with the coronavirus isolation!
I definitely get heartburn with paclitaxel, especially as I can't have the IV ranitidine pre medication because I'm allergic to it. I take omeprazole daily which helps to control it. Speak to your team. They will be able to prescribe something for you x
Thanks Rizzer. As if we didn't have enough going on at the moment, this whole coronavirus thing is a nightmare! Hope you're doing ok xx
Hi frenchie, sounds like reflux. I haven’t suffered too much from that (yet?!) on paclitaxel (I’m on cycle 1 of 2 weekly cycles) but I’m pretty sure other ladies on here have and have various remedies. I know you know this 😉 but do call your chemo nurses to check it out...
Worth glugging some antacids like gaviscon and if it helps a bit (perhaps not strong enough to knock it on the head - but won’t do any harm?) then might put your mind at rest at least? Take care X
Sending love and hugs to everyone, it's so hard in the current context.
I have a question, I had my second (weekly) dose of paclitaxel yesterday and I've now got a sore throat (almost a burning feeling, maybe a bit refluxy, not exactly sure what that feels like tbh). Is that a side effect? Or could it e a side effect of one of the other meds? (Antihistamine, steroids etc). Obviously my imagination is going into overdrive with all this COVID 19 stuff although objectively I don't think it's that as no cough and no fever.
Its so tough isn't it ☹️ especially when family need you! I have pretty much been self isolating anyway as so poorly on last cycle - hopefully once our last cycles are done our immune systems will re build - hope we get proper advice soon ☺️ take care everyone x
Hey elsiedog, thanks for info. Good to know we’ll get some more guidance. Not sure I’ve really started to take on board just what this is actually going to mean for us all...
Clearly it’s going to have all sorts of awful consequences for people in all sorts of situations.
Madcatlady, how sad not to be able to reach out to your sister in the middle of all this. It’s so hard isn’t it.
I’ve been increasingly feeling like part of society’s problem, not part of the solution, if you know what I mean!
Before chemo, there might have been comfort in being practical help to others who were vulnerable right now. Unfortunately, we have to accept, we’re some of the vulnerable ones!
Add to that, having our own support networks that we’ve relied on to get thru this suddenly at a distance (for all the right reasons). Bit of a curve ball isn’t it...
Sending everyone loads of love Xx
Thanks rizzer; she's a beaut! She really loves that bench, and if she's there first, she stretches her legs out until her claws are resting against my side, just reminding me that I'm only there on sufferance!
I went to see one of my sisters today. She's broken her elbow and is climbing the walls at home, plus she's in pain. We kept well apart, washed hands, didn't kiss or hug and sat on opposite settees. I kept thinking, 'should I be doing this with coronavirus?' It's really hard as she's been a huge support to me (having had breast cancer too), and now she's miserable, sore and bored...
You sound chipper 🙂
Hi Mc22. Yes I heard the Deputy Health chap on Breakfast this morning say that anyone who is recommended to have flu vaccine eg those with Diabetes 1 or 2, immune system conditions and chemo/cancer patients will be hearing from the NHS in a week or so about longer term isolating.
Just heard on the news we are going to have to self isolate for 3 months! I miss my little granddaughters already!
I am thinking I might have misunderstood this announement. Did anybody else hear this?