dear lollybum and Abney
I am new to the forum and was just popping by and read your posts, I dont have much to offer but I wanted to send you both a huge hug and lots of hope for your treatments and to say what brave, brave ladies you are. I hope you are both surrounded by those who love you.
you are in my thoughts
xxxx
Thank you Moijan for the link and love! ?Will defo take a look. It actually wasn’t too bad as it’s quite a quick one which is good and I’ve opted not to have all the pre meds- well no piroton! Unfortunately there was nearly a blip at the start as my heart was misbehaving and rate was 157!! So u can imagine how freaked out they all were and got me straight in the ecg machine! Left me to calm for a bit and I had one of my anxiety tablets which managed to get it to 150! My onc insisted we proceeded as we are never going to tackle problem if chemo doesn’t resume! Felt very drowsy rest of day and I’m still suffering with the plural symptoms but I’m pleased we did it! I do hope I can cope with this chemo. Already I’m happier that it is a shorter infusion!
Thank you Funnyface and Moff1 for the love and support. Really means a lot ??
Lollymum how did you get in on today with bloods and port fitting? I hope it all went ok and you are ready for Friday! Thinking of you ?
Sending all you lovely ladies a big hug and thank you for being there xxxx
Moff, I just love the modification you made to lollymum’s name…sounds even nicer…not sure she noticed thoxx
i just love these freudian slips when they occurxx
Abney and Lollymum…sorry to hear you are both having a rough time.
I had pleral effusions and it was horrendous. The second attempt at pleurodesis seems to have worked (up to now) and aslo the carboplatin chemo i had straight after. My lungs will never be perfect again and i have had progression since but i am so much better so please keep plugging away.
I too was very apprehensive when someone suggested i go to or local hospice…to me, that was the end of it and they were preparing me for the end. However it wasnt really like that at all. I didnt get asked about end of life but i’m sure they’ll be led by you and what you want to discuss/have help with. I remember when i was in hospital with pleural effusions (had also had a lung clot the year before) the Clinical Nurse Specialist started to talk about my prognosis, saying things like whether its 2 months or 20 …It terrified me. As you say, we all know where this is going and for most of us far too early in our lives, but i just didnt want to face it. Try and gather your strength andkeep pushing on, i’m sure when treatment kicks in you will find yourselves in a better place. We are always here for you.xx
Also, welcome Moff. xx
Lollymum,
im hoping that things are going a bit better for you now?
Yes keep plugging onwards…we are all here for you.
love and hugs,
Moijanxx
Hi Funnyface…wheres all these long words. sprouted from lol xx
Abney, dont know if this will be of any se to you but when i was really ill with pleural effusions and coul;dm hardly breathe i was given oxygen and to help with the pain, oramorph. I was told that it can also help with breathing. I think it helps mainy because it relaxes you so you dont panic which may make breathing worse??
Ask about it, anythings worth a try. x
Hi ladies,
Haven’t felt up to posting all week. Can’t really point to anything just finding things hard to face.
Last week was a little bit up and down: I wasn’t well enough to go onto the trial drug I’d been put forward to. Never mind, so now I’m on weekly pacitaxel. Has anyone else had this? The breast cancer care leaflet about it has scared me a little as it only says it halts the growth, rather than reduces the tumour size. Does anyone know any more?
At least I was well enough to have the first chemo. I’ve been tired (not sleeping doesn’t help), and low but otherwise not too bad.
Abney - really keen to know how you are this week, and whether things are improved. I can’t imagine how scary the heart thing must be. Another gentle hug hun x
Tomorrow is my second chemo. I actually managed a walk today and got some sunshine, and hoping that that has helped my bloods for tomorrow.
(Lollybum! ha ha)
Fi x
Lollymum, sad to hear you are feeling down , we all get like it with no actual reason. You have done really well to get yourself out in the fresh air. I had weekly paclitaxel and from what i can remember was fairly ok on it. Unfortunately it didnt work for me for very long but i know there have been lots of good results from it so have everything crossed for you. Hope bloods are fine and yo can have roound 2. xx
I was on weekly Taxol for almost 21 months and found it very doable. It kept me stable all that time, I hope you do well on it xx
Hi ladies, I am sorry I haven’t posted in a while. I’ve been really down and chemo (Paclitaxol) has been really difficult.
By now I should have had 11 of fhe weekly treatments, but I’ve only managed 8 (or should have been 12 by now perhaps) In the beginning I had low neutropenic counts as you know, and infections, and more recently the side effects of the chemo have caused skin reactions and mouth ulcers and peripheral neuropathy that meant my oncologist wouldn’t sign me off for treatment.
After seven treatments I had a ct scan. this has shown that my original liver mets have shrunk, but I have new tumours in my liver. I don’t know what to make of this, and obviously it’s not what I hoped for. I felt sure that the taxol would work as it did for my original bc 3 years ago. But this looks like resistance.
So I’m being put on a tablet chemotherapy.
However before that I have to have a break from treatment (which is worrying) as my bladder wall doesn’t look normal on ct scan, and I’ve been passing blood and clots. I’m terrified as you can imagine. Some antibiotics have cleared up the bleeding, but the urethra is still really irritated. I’m being sent for a cytoscopy (I think that’s what it’s called) by a urologist to see what’s going on. I’ve had three UTIs since starting chemo in March, and it’s hurt to pee for months but no one has taken it seriously (I’ve mentioned it so many times to my oncology team), until this scan. I’m so scarred it’s cancer there too. My oncologist says she’s never seen bc spread to the bladder. My GP thinks it is the chemo irritation the bladder, but i just wondered has anyone else had constant cystitis on chemo? It isn’t on the side effects leaflet, but i notice that the CHristie leaflet does mention it online.
Grateful for any advice or sharing anyone can give. xxx
Hi funny face and nicky, thank you for the replies.
Well mixed lot for me. My CT scan showed shrinkage in my original liver mets (on the Paclitaxel), but new tumours.
CT scan, which showed as “not normal looking”, they are sending me for a cystosocpy under general anaesthetic next week.
Because of the new tumours and the bladder “suspicious area” they have suspended treatment to my liver mets - which terrifies and angers. By the time the cystoscopy results are in, say by 28th June, I’ll have had no chemotherapy or other treatment for seven weeks, which is really scary.
In the meanwhile, since I last posted, my bladder symptoms have disappeared almost completely.
I don’t know what to make of it. Surely if it were mets to my bladder the symptoms would not have calmed down once off chemo?
THere isn’t much on the boards about spread to bladder or bladder problems caused by Paclitaxel. Does anyone have any advice or experience?
In the meanwhile because of the enforced chemo break I’m feeling better, and so this Saturday we made a snap decision to go to France for the day. Beautiful sunshine, sandy beach not far from Calais and wine shopping (alas not for me - god I miss a glass of white wine!). Nice to do something normal.
Hi all - lovely to hear from you all. I read your replies, but haven’t had a chance (laptop to reply until now).
My cystoscopy was fine - and showed no abornalities. Which is good.
However the seven weeks off have increased my tumours and my liver function is up the spout (well what a surprise). However, there’s no choice but to start chemo, so today I’m due to start capecitibine. I have to admit I thought it would be lovely to just have tablets at home, and they’ve said that the side effects aren’t severe - but they said that about paclitaxel and it buggered me! I’m sitting here waiting for supper absolutely DREADING taking the first dose. At least in a ward someone else gives you the chemo. Deciding to take the tablets by myself and having the strength of will to do so is suddenly terrifying. I hate being sick, so am scared to read that this is more likely with these tablets. Anyone else on this drug?
On the positive side, I am relieved that I’m starting something that has the potential to control, or even shrink my tumours. I feel like I’m quickly running out of options as the paclitaxel didn’t work.
Hope everyone else is going on okay xxxx
lm
Hi Lolly mum
I do envy you being on Cape. Take any antisickness drugs you are given if you do feel sick. My first cycle was a rough ride, but a dose reduction made it doable and it’s lovely to be in charge yourself. I was on it for almost two years… all that time and now, my lfts were high but onc says the chemo does that to me…they are still high on Eribulin.
Do remain active tho… I wasn’t very and I got a dvt which I am convinced was due to: being on Cape + antisickness+ inactivity.
As sec cancer ladies we are all at risk of days anyway but those two drugs both have clots as a side effect…
I also got utis and guess that’s maybe why your bladder probs occurred , I get them on Eribulin… or I did , but my body has got used to the drug now and hair, lfts, urine etc all mostly back to normal.
Eat just before taking cape and drink loads
Call onc if any concerns, or bcc, but hope you feel well as it’s a lovely drug to be on… better than being tied to a drip. Love and hugs,
Moijan ???
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Hi all,
Hope you are all ok.
Moijan, Paula and Nicky, thank you so much for your encouragment and advice. So appreciated.
Nicky, I am so encouraged by your being on Cape for 18 months and not having the antisick, and that your tumours responded. I’ve been given domperidone for nausea. Yesterday (day 1) I was nauseous all day. But not today - so I’m now not sure whether that’s the chemo or the ascites pressing on things.
Moijan, ahh hun, feel bad now you envy me - I don’t mean to moan. I’m just a baby about it all. Yes I’m on a reduced dose so hoping that it keeps the se at bay and I can managage longer than I did on pac.
Paula do you take the metoclopramide every day? Likeyou I had so many side effects on my previous chemo so feel a lot is riding on this. To hear of you three ladies who had great results on cape is thrilling.
Being called upstairs - daughter getting ready for prom - so signing of too quickly - but have a lovely weekend all.
LM