I'm very glad I'm not the only forgetful one and also relieved to hear that some of you have struggled with breathlessness. It does help to know that other's are going through the same rubbish.
Galligirl, I've been feeling a bit grumpy and miserable too these last few days. I'm halfway through chemo (I've done 8 out of 16) and have my MRI scan coming up on Wednesday, so should really be feeling a bit more positive, but like you I feel that this is dragging on. Midway-blues?! I don't have enough energy now to do much and can't remember the last time I felt anything like "normal". Still, as you say, the sun is shining today and we need to stay positive. It's just not always that simple.
On a much more positive note, we have started to think about planning a lovely holiday next year in August in the sunshine somewhere in Italy. By then, all this should be well and truly over and having a holiday to look forward to will be just lovely.
Have a restful weekend.
Thank you Aley and Lisa T....woken up much perkier although haven’t actually got up yet!...my H has provided my tea! And the sun is out so feeling more positive already ☀️😎
Been a rubbish day...think it must be my neutrophils low point. Had the same feelings last FEC just a day or so earlier....thought I had escaped them this time round. Hoping that, like last time, I come bouncing back the next day! 🙂. Feel like chemo is going on forever I had my first FEC at the beginning of August....then lost weeks because of infection and removal of implant, started chemo again end of September.....from the beginning again which I as happy about but my last T will be in January which seems a hell of a long way away....
Anyway Grumpy is gong to bed and looking forward to waking up with a clear head....and some energy! 😊
Thanks For the advice again Gaby.
i didn’t eat during the treatment yesterday cause I was too nervous waiting to see if I had any allergic reactions. Funnily enough I felt a little spaced during the pre-meds which did include Piriton.
As for forgetfullness, hell yes. It’s a nightmare. If I don’t write it down, things just go right out of my head.
not feeling too bad today.
wishing everyone a good weekend x
Hi everyone. Hope you’re all keeping well & not suffering too much this week.
I changed to my new treatment plan today & spent 5 hours on the ward due to an allergic reaction to the Paclitaxel. Had really bad hot flush to neck & chest, heart rate, temperature & blood pressure all spiked so they had to give me more antihistamines & then a break to see if it settled down. I did manage to finish the treatment, then carried on with the Carboplatin without any further issues. Got home at 7pm & now just feeling slightly anxious to see what SE play out with these new drugs.
8 more treatments to go.
Gaby - have you suffered much with nausea on these drugs. I found that the nausea after my last FEC treatment last3d almost 3 weeks.
I've been a bit quiet this last week due two my double-dose of Paclitaxel and carboplatin, which knocks me out a bit. Had a new SE this time - yipee! Bad dry cough and terrible breathlessness when doing anything other than sitting. I also struggle at night if lying flat, so have to have three pillows in various positions amd can't lie on my side, as this seems to restrict my breathing still further. I've had additional bloodtests and swaps to rule out any infection and gastric reflux; all were clear, so it's just something I might have to get used to Hopefully it will wear off a little over the next week and I am also trying to find other ways of dealing with it. For a start my BCN told me to slow down! I still leave the house walking at some pace, only to find that after a few yards I am breathless, so yes, slowing down seems like a good plan! Went to the theatre last night and in order to control my cough I had 3 Jakeman's sucking sweets, which oddly eoungh seems to make quite a difference once I was back at home and in bed - better night. Has anyone else struggled with breathlessness and got any tips?
I've got an MRI scheduled for next week to check on progress. Am rather excited about this and hope that the news will be good. If the tumour shows signs of shrinking, they may consider lowering the last Carboplain dose, which would be lovely. Then I move on to EC.
I have stopped cold-capping, as my hair is falling out big time. Well, at least I tried. Actually, it's quite nice not having to spend an extra 2 hours on the chemo ward every Wedesnday, far less tiring. I don't bother wearing anything on my head at home, but am aquiring a selection of nice little beanies and scarves for going out and sleeping. I didn't want a wig, it's just not me. Also haven't braved the shave yet, as I still have just enough hair to get away with it. I have a hairdresser appointment in 10 days, so will see if there is anything left to cut by then, otherwise....
Hope everyone is having a reasonable week.
Thanks Lisa-T for the tip on using the voucher to put towards a wig - will definitely look into that!
Bee - so sorry to hear you've had such a horrid time with the loss of your dad as well, sending massive hugs to you How are you doing now? xx With the food stuff, I'm just over 2nd cycle of FEC and I do find my taste changes about a week later.
Keeno - sorry to hear you've had a rough time on the T. I know what you mean about constantly checking temp like a looney, I was doing the same due to having already been to hospital twice after each round of chemo. The helpline nurse had to be really firm with me and reassure me that I was just panicking before I eventually started to feel ok lol.
I'm really anxious about changing to the T drugs as well, even though I still have one more FEC to go. I was freaking out at my breast care nurse last week and telling her "I can't do this, the anxiety over infection / paranoia over side effets is going to break me at this rate!" (though I can see the funny side of it now actually that I am much calmer, realising I am probably the medical professions' worst nightmare in terms of the hypochondria that seems to have come out of me).
Hi all! I haven’t posted for a while (think it was couple weeks after my first ec) im now halfway had 3rd round week and half ago. After the second i felt pretty rough day 4,5,6 nauseous, dizzy and blurred vision. Ive not been feeling to bad after the 3rd, armpit hairs have gone which is great!! Bottom eyelashes gone. I find i go off certain food and drinks for the first week then it goes back to normal?? I found my 3rd round pretty tough due to the fact i lost my dad the day before 😢 i was called at 2am go and see him and by 5.30 he was gone. I was by hes bedside. Then having to go to chemo the next day was horrendous, it took 5 attempts to put cannula aswell. It just really gets me that my dad went before he got the chance to see me get through chemo and hes last image of me is all hairless! He died from metastatic cancer of the liver. So when i was diagnosed it was a massive blow to the family as my dad was then receiving hes final rounds of chemo So emotional its been tough.
Love & hugs bee 🐝 xx
Hi everyone 🙂
I'm new to posting here despite starting chemo on 26th September....I finally have only just had some time and space to sit down and do this but have been reading some of this thread and wanted to say that your shared experiences have been a godsend to me!
I've had two hospital stays already (first one was due to a combined anxiety attack / body not handling the first chemo too well), then 4 days after my second FEC I somehow got a UTI and ended up in hospital for 3 nights. Bizarrely I didn't actually feel all that ill the second time round, I thought I had come down with a bit of a cold or something but the high temp flagged up the infection.
In between the hospital stays however, I have been very lucky to not feel too ill - most of my problems seem to be gastric / stomach ache or discomfort and my asthma seems to be a bit worse, so never sure if I'm short of breath or if its just the asthma! I do find myself very tired sometimes and I've noticed if I over exert myself in that first week after chemo, I tend to get the shakes and my heart feels like its racing.
All my hair is practically gone now so I'm embracing the bald look, its a bit upsetting at times but on the whole I found I actually enjoyed having really fast showers (who knew hair washing took so long!). Supposed to be getting a wig on the NHS but I've heard they are appalling so I might not bother, so long as my head is warm I'm happy to keep wearing scarves and hats.
Hope you are all doing ok with your respective treatments, look forward to going through this experience with you from here on
Really cold watermelon is quite soothing at the moment. Worth trying if your struggling with bad taste / oral thrush.
Ahhh I have heard of that...thanks for the reminder! Had a drink of squash today that tasted like seawater!
Hello ladies, sorry to drop in again but j though of something else the nurses suggested to try for nasty tongue and tastelessness... Try getting the fizzy vitamin c tablets (ones in a tube which you should put in water) and let half of ine dissolve on your tongue... You can have a whole ine butntheh are quite sharp. They do cut through the thick coating and help for a while.
Anyway just a tip to pass on.
Thanks Aley - nice to know im not the only one. I think I was overly-worrying too as my Dad got pneumonia on his second chemo and ended up in HDU. Even bought myself an oxygen saturation finger monitor at the weekend as I was worried I was short of breath - my levels are a healthy 99%...
Yes I've had the injections this time and looking at the filgrastim research evidence online, day 11 does look like the lowpoint in WBC count. My WBC before round 1 was 7.8, down to 3.8 before round 2 so I guess I was starting from a weaker position. My neutrophils dropped from 5.07 to 1.41 too. Will be interesting to see where they end up before my next round...
Hi all, I'm on the ROSCO trial. I think they scan (ultrasound or MRI) after the 4th chemo, and then I think they operate, and if necessary, more chemo afterwards. My tumour is easy to feel, and I can feel its shrunk a bit, but as they operate whatever, I dont think the size matters really.
I've been feeling very sorry for myself recently as I've been so tired and unable to do anything, and then I got a cold/sore throat too. But I think yesterday was the low point and now I'm on the up (fingers crossed). I was feeling so ill yesterday I phoned the hospital for advice. I was continually checking my temp, wishing it would go up so I could go into hospital to get checked over/have blood tests - does that sound silly? I was just so worried I had an infection brewing as I felt so ill. I'm hoping it was just the low point in my immune system (11 days after chemo) and now its improving. Hoping to get away for the weekend with the family before the next chemo starts.
Just walked my loopy dog in the sunshine....lovely!
I have a port in my arm. I had it put in about a week before my first chemo. It was very easy to put in....I have little arms so protrudes a bit and I found it a bit sore and annoying at first - now I don’t even notice it. The nurse basically pushes a needle into the skin above the port...it can hurt a bit and they can apply an anesthetic but that takes another half an hour to kick in so I’ve not bothered. Once needle is in you can’t feel anything. They can draw blood easily and drugs just get pushed in!
I have good veins but hate cannulas so have been happy with port.
Thanks for the input Gaby. I suppose i’ve Got to think that it’s 2 more months & then the worst is over. Enjoy your gardening. I’m making soup then off for afternoon out with hubby. It’s sunny but cold so just going to wrap up.
Aley - I have a central line which is similar I think. It makes life so much easier than being used as a pincushion every time they try to get bloods. Definitely worth it I would say.
i know the oral thrush & bad taste in your mouth is awful. Keep persevering. Mine’smuch better after about a week on nystatin but not completely gone.
Enjoy the sunshine whilst it lasts x
I'm triple negative and on weekly Paclitaxel plus Carboplatin every three weeks. The Paclitaxel is quite easy to tolerate - just tiredness, bad taste for a couple of days, a a few stomach niggles, but nothing major really. I find the Carboplatin harder to deal with, as it really affects my stomach and taste buds and I feel farily lousy for 3-4 days. The weekly routine does dominate your life a little. I have a picc line which needs sorting, plus bloods, every Tuesday, and Wednesday is my Chemo day, so that's two days of my week taken up with hospital visits. It's a bit boring, but otherwise totally manageable. The Carboplatin also seems to have a worse effect on my neutrophils, so that's a bit annoying, as I am always a bit worried that my count will be too low. I've got four cycles of paclitaxel/carboplatin in total; done two and am about to start on cycle 3 this week, i.e. have the double-dose of both drugs to look forward to for Wednesday so have kind of written off the rest of this week plus weekend, as I know I won't be feeling great. You may react quite differently to this lovely cocktail, but I think in general both drugs are tolerated reasonably well.
Thanks to everyone for the various tips on dealing with the bad taste. I haven't tried ice lollies or fizzy sweets, so will give those a go, but I gues really it's just something we have to deal with.
It's still beautifully sunny here, so am going to potter about in our garden, which is a bit of a jungle.
Hi Aley. My doctor prescribed Nystatin for my oral thrush. I’m also using the corsodyl mouthwash twice a day, which is helping. Hope you’re feeling better soon x
Wishing everyone a good week - it looks like we’ll have a little bit of sunshine to help keep us smiling 😎
Hi ladies, i fully understand the taste issues, some of the things i found helped were regular salt water mouth washing, salty things were ok, anything ginger, tonic water, fruit teas, fizzy haribo sweets, pineapple. It really is try and see, some soup was good too. Also if your mouth gets sore ask chemohnit for mouth wash and for ulcers try Iglu and ask for fluconozole for oral thrush. Brush yiur teeth after eating too. Hang in there your taste wil return.