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.
I’m having same problem with taste. Pineapple is good, ice cold drinks ( but not fizzy) hot water with lemon, ginger & honey, ice lollies. Unfortunately none of them last long enough to keep it away.
Does anyone have any knowledge on how weekly chemo differs to 3 weekly cycles?
i’be just finished my 3 FEC & was due to start 3 cycles of doxetacil (T), but yesterday following an appointment with a new oncologist I was advised that it would be better to switch to weekly Paclitaxel & Carboplatin for 9 weeks. I’m triple negative so he feels this would be better for me. Maybe it’s the thought of weekly chemo sessions as opposed to every 3 weeks. I had some horrendous SE from FEC but still usually managed 1 good week out of each 3.
Hope everyone has a good weekend. Weather is lovely here, crisp but blue skies so am going out with my step-daughter this afternoon for little retail therapy & bite to eat. Xx
I could do with some ideas too! Have got frozen pineapple chunks and mango in the freezer and they help...some boiled sweets in the car....but I am struggling too! GGx
Thanks Galligirl. I've had a quick look at the Macmillan site and I don't think I'll qualify. As far as I can tell you have to have real issues with mobility and/or looking after yourself to qualify. I don't have any problems with any of those, but at least I've checked it out.
I'm loosing my sense of taste again today and getting that horrid metallic/musty taste instead. This seems to happen most weeks on day 2-3 after the treatment and is even worse when I have Carboplatin (i.e. next week - yipee!), when it seems to last for 3-4 days. I really like my food and find this one of the most annoying SE. Pineapple and very spicy curries seem to be the only thing that can overpower or at least reduce that awful taste, but I haven't found any really effective way of dealing with this. Anyone got any other tips?
There were some discussions recently on the Macmillan site I remember seeing...it might be worth a look.
Aley: I had a bone scan as well, but I think that is because I am triple negative and they wanted to check out absolutely everything before I started on chemo. Luckily all my scans were clear.
About PIP: do we qualify for this automatically because we've got cancer, or do we have to show that there are mobility/other issues that limit what we can do? I've checked the government website, but that doesn't provide any detailed guidance, though it does seem to imply that you have to have limited mobility and/or problems with everyday tasks to qualify. I guess I can just phone their helpline to find out, but wondered if any of you know more about this?
i had a ct scan and bone scan after they found the extent of my cancer was more than expected - both were found to be clear!. Oncologist implied that ct scan was now good enough to see bone issues and that the bone scan was a double check ordered by surgeon. Just my experience. GG
Hi Pulapula - although not the best place to be in one way in another you've found the best support and advice available by joining Breast Cancer Care's forum! I certainly wouldn't have got through it all last year as well as I did had I not found this safe place! I'm from May 2017 Chemo starter group and still on here browsing daily to see if I can offer any help or support following my experiences!
Anyhow, I've seen you mention PIP and my reply to you on your question is a definite YES - I didn't come across it until after the chemo, surgery and radiotherapy - I applied and I was successful in achieving the lower amount. However, I was informed during my assessment that had I applied whilst going through chemo - I would have been accepted straightaway. So please do fill in the form - there's nothing to loose! - it also removes the financial burden that cancer brings with it! I work in school and I was unable to attend once the chemo started due to infection risk - I therefore ran out of full pay and had to go onto sick pay - a huge difference and at the same time - bills increase (due to being at home more!) and expenses increase (not being able to drive yourself at times and when I had surgery I had to have help to do things like hoovering, ironing etc). One tip when completing the form - think of how you feel on your worse days......
Good luck with the remainder of your treatment xx
Hi - maybe a bit of anxiety? When I was first diagnosed and had my biopsies, I kept having moments of being short of breath...not painful just weird...it was put down to anxiety. Always worth getting it checked out though. GGx
Thanks, ktk. I'm sure that just what it is. I'll check with the nurses tomorrow and if they come up with any useful info or advice, I'll post it here.
As I was walking back from the hospital after bloods and Picc Line care this morning, I started to feel rather breathless and my chest seemed to tighten a bit. The feeling only lasted while I was walking (takes me about 30 minutes door to door) and it's completely gone now that I've had a rest, but it was a bit odd. Has anyone else had that? I assume it's just another new SE, but will check it with my nurses tomorrow when I go in for chemo.
I had a lovely day out with my other half yesterday. He/we enjoyed the time "out" so much, he has booked another day off work in November. If you can persuade your hushand/partner to do the same occasionally, I really recommend it as a way of getting some quality time away from everything, chores at home, cancer, children, and just enjoying eachother's company. He even felt relaxed enough by mid-afternoon to ask me how I was coping, something he has not done for a few weeks. He then just listened to my answer, put his arm around me, which was perfect - just a bit of love and comfort.
Hope everyone has a good / reasonable week. I'm on number 6 of 16 tomorrow, or 6 out of 12 carboplatin/paclitaxel (which sounds much better), to be followed by 4 EC in December.
Hello girls, justbwanted to offer a bit of advixe for thise of you eith "itchy wigs". I have bamboo wig liner which is realy soft little skull cap which you wear under the wig and makes it so much better, j got it from the wig shop, also found once all hair gone it was more comfy. Foe those of you approaching half way, my hair began growing by T No 2, now 3 weeks post last chemo and have fluffy hair all over head!! As for husbands mine struggled with talkingnto me aoart from saying "be positive" and ",it will be ok".. its hard for them to know what to say or to voice how they feel i i think, but there is help for partners from macmillan if they need it.
Lisa T - I still have a few strands all over too..so I have gone from looking like a scabby badger when I first went short to now a sort of ducky fuzz! I assumed I will loose it all after FEC 2. Still have eyebrows and lashes ...and I think losing those will be the hardest...
FEC 2 on Thursday...just want to make it this time....( I had by first FEC in August then got an infection in my implant and had to have it removed...the delay meant I went back to the beginning again...so I have done two FEC 1s...)
🤞everyone stays well this week....GG
I washed my hair this morning and lost two large fistfuls of hair - it was just awful . So, I phoned my lovely hairdresser and went to get a radical, very short pixie cut. And rather surpringly I actually quite like it. Now at least I don't have tons of loose hair falling in my food, clinging to my clothes and falling on my pillow. Also, I'm hoping that the lack of weight might actually help my remaining hair a bit. I'm so relieved I've done this. I also went for a headscarf workshop on Friday at my local Macmillan Centre. A lovely lady showed me lots of different ways how to wraps scarves around my head. She also had a huge selection of lovely beanies etc that she makes herself. They weren't cheap, but I treated myself to a couple. I'll need to keep my head warm, even if I don't loose all my hair.
I think I'm lucky with my husband. He's very worried of course and I've had to stop him from giving me "concerned" looks all the time, checking up on how I am etc. It was getting a little too much. But he now seems to have found a better balance. He wanted to come to the hospital for my treatment every week, but I have instead persuaded him to take the occasional day off when I'm actually feeling well, so that we can spend some quality time together, e.g. go to the cinema or for a walk. That way we're not just always talking about this wretched cancer and can enjoy eachother's company (without the children!). It's important not to forgot how to do that, I think. We've got our first "date" on Monday and are planning to go to an exhibition followed by a nice lunch - Mondays are my good days, so I'll enjoy my food!
Have a lovely Sunday (despite the rain!).