Hi Lisa Marie, sorry to hear you are suffering with the mouth too. I have to say so far my mouth isn't as bad as on first T but not sure if that will last, I am using salt mouth wash and have some Fluxonole stuff to take to stop getting thrush again but it is still feeling slimy and tasteless. I too can eat soup and also, weirdly, quiche! Sucking mints helps too oh and something the Oncologist told me was to get the Vit C tablets which are supposed to be disolved in water (they come in a long tube quite cheaply Tesco etc) and instead of disolving one in water just sit it on your tongue and let it fizz, it does help cut through the slimyness for a whilte. Lots of things have a horrible feel though, like coated in lard, I can't taste potatoes at all and for me salty things don't taste of much either, had dry roasted peanuts last night which didn't taste of much at all, but still ate them as starving! I made a lovely shepherds pie too but I couldn't taste it, mashed potatoe is vile at moment!! I think you still look lovely, I really miss cheese, my all time favourite food and that tastes of wall paper paste at present... although the mini marmite ones are passable. Chocolate is vile too.. boo hoo, I should be losing weight, but still seem to be putting it on!!
I have managed to escape any aches and pains so far, but as I've only had 3 jabs as yet it may happen tomorrow, sleep still hit and miss too, hot sweats and steroids not great for that are they! Only other SE is my thumb feeling numb and tingly, are you getting that?
I keep saying I look like Dobby out of Harry Potter without my hair or Yoda from Star Wars which makes my family laugh, especially as the eyebrows are virtually gone and the eyelashes too, but the hair on head is coming back. We have to laugh don't we otherwise what would we do....
Kip aka Yoda
@cdc Happy news from Barts! I did win a free oncology massage from Gazelli House via Ellie's Friends -- but I haven't had it yet. It's booked up for 18 Sep, so might need to be rearranged to fit around whenever I next get chemo.
I highly recommend that everyone check out the freebie lotteries at Ellie's Friends -- I also won a visitor pass to Blenheim Palace, which I've never visited, to be used sometime between now and the end of the year. Lord knows I'll need a little cheerful day trip in the next month or so, after these dark days of limbo.
Off to drink another litre of water. Practically the best thing I can do to nudge my liver back to a happier place.
iI’m appalled to hear your experience with delays in being seen. I do so hope that your case is properly investigated and you get some answers and aren’t just fobbed off with ‘acceptable timescales’ twaddle. I’m sure I’ll get the same when I put in my complaint. It’s just such hard work even contemplating talking with PALS when I’m not feeling 100%. There have been a fair few errors (and inconveniences such as not having a bed pan free after my first surgery, very humiliating and cancelling my pre-chemo appointment at 7.30pm the night before I was due to go in the morning) At the beginning of June I was told by the surgical team that there was going to be an investigation to check out all my previous mammograms and ultrasound images to see if they missed anything but I’ve not heard anything since. I was recalled last year in June for an ultrasound but they just found I had a lot of cysts. I wonder if the tumours were already growing by that stage. Who knows?? The dog sitting does sound challenging but I’m sure your daughter was delighted that you could help out! Hope yestedays physio helped and your got your green slip and also that your stomach has settled.
Thanks for the tips re taste buds and bone pains... I'll take them on board.. anything worth a try.
So sorry to hear the problems you are having with liver tests and next chemo, having delays must be such a nightmare and you sound like you have so many things organised to fit around the appointments too. I'll cross my fingers for you that everything gets sorted, our poor bodies have to take on so many drugs and things its no wonder our livers complain once in a while. Hopefully the MRI results will show better results from the chemo than you can feel, try to remain positive, I know thats hard and people saying it all the time can be frustrating... you'll soon be back on chemo and wishing the SEs away!
Lisa Marie- thanks for the website, not in my area but made me smile at the thought of being a model!!
Oh, my: so many things.
@Lisa Marie: I hope you are feeling better soon. And I hope the scan on your arm helps to resolve those problems asap.
@Sally: Keep fighting -- to get better monitoring going forward, to improve the system, and to keep the fight in you.
@Kip: I tend to get bone pain from the injections around day 3. Antihistamines did seem to help calm them -- though I was taking them for hay fever, I noticed it was better in cycle 2, and it seems that might have been why. On taste, I found that my DIY electrolyte booster helped with my buds during FEC -- glass of water, 2 tbsp lemon juice, pinch of salt, drop of maple syrup. It may not work for everyone, but maybe worth a shot? And pineapple bypasses the taste buds and stimulates the trigeminal nerve, which may be a nice way to revive sensation of taste.
For me, chemo on indefinite hold. It seems my liver enzymes were still bad in Tuesday's bloodwork, so I'm now scheduled to see the oncologist next Wednesday, with bloodwork the day before (rather than day of). I'm thus now anticipating first TPH no sooner than next Thursday & Friday -- 2 full weeks after my original schedule. And that's if I'm lucky with liver recovery.
I doubt FEC has done much to the HER2+ right IDC/DCIS, and it's only shrunk my HER2- left lesion a little bit, so far as I can feel. (MRI results might say something else, but I won't get them until next week.)
I want my HER2 drugs -- especially after your great report, @Mimi! (Welcome!)
To say this is a huge bummer is an understatement. It's also left me feeling completely out of control -- I had everything planned, between work and complementary therapies and dentist appointments and everything else -- and now everything is in flux, and I haven't got a clue when I'll be able to get things back on track. And my mantra of taking things one day at a time doesn't really help when I feel as though nothing is happening, day after day.
Lisa Marie - oh dear how kind of your OH to share his bug with you, hope you are feeling better today though. I think 1st T does seem to be worse than 2nd so far, but as I am only only day 4 I could be jinxing it, I think I know what to expect this time round. So far no bambi legs or aches, I am having the injections too this time round so it could kick in shortly as only had 2 so far. Embollorry said she is taking paracetomal before her jabs this time round and the pains have only been minimal? I have a slightly slimy mouth again but am taking Fluxonole or something like that to help keep thrush away and swishing with salt water every time I eat to try to keep on top of it, taste is a bit missing too! I think the news about that lovely lady passing has hit us all, regardless of our diagnosis, I had a tough day too but we must remember that its only the sad stories that make the press usually and those success ones are still out there and in great numbers too! I should think with all the upcoming appointments you have you are bound to be worrying, I'm dreading my next appt on 19th Sept with surgeon to see what/where/how many nodes are being removed next. I know I've had surgery already and managed ok and have no problems but its still something else to think about isn't it. I'll be keeping my fingers and toes crossed for you.
Sally - that sounds awful that you have to deal with the issues surrounding your treatment, you can do without anything else to think about at this time can't you, but don't let them get away with it!
Hope everyone else is ok today, no toilet issues happening or sickness! I've just realised today that I have hardly any eyebrows left now.. .how strange that the hair on my head (and toes!!!) is really growing and now eyebrows are falling out... thank goodness LGFB course showed me how to do eyebrows, although they don't really match.. but as the lady said "Eye Brows are siblings not twins!" hee hee.
Take care ladies...
@kimini - side effects of Herceptin include bone/joint pain, diarrhoea, fever and runny nose. I've had all of those, some of which will also be due to Taxol so it's difficult for me to tell which is attributable to what drug! My second injection is due next week with the next does of Taxol.
Sorry i tend to pop in and out of this chat,
I have just started 12 weekly course of paclitaxel with herceptin every 3 weeks
Has anyone else had this ? wondering wht the side effects might be please?
I have just finished 4 x 3 weekly EC chemo and had relly bad nausea and tiredness from that
Ref the PICC line. I bought a plastic sleeve, but the IV nurses also gave me a prescription request for the GP for a slightly different one (a Limbo). I go to see the IV Therapy nurse team each week who are based on the hospital site for the flush and dressing change.
I finish one course of ABs today but the other last until Saturday. They're not helping my toilet visits so I'll be glad to see the back of them! I read up about Herceptin side effects (had my first injection with T1) and what d'ya know - diarrhoea, bone ache and fever! I'm doomed! I did also read about the benefits of taking Claritin (or another anti-histamine with the same main ingredient) to help with bone pain from the injections and T so I'm going to give those a whirl.
Have a bit more energy today, but certainly not where I was at this stage of FEC. Of course I'm not sure whether that's T or the after effects of hospital and ABs.
Have good days ladies
Counselling definately looks the way forward for us, I am going to try to do the moving on course, once the treatment is all done, I will need something I think... its the emotional stuff that is so hard isn't it. Beginning to feel odd about the end of chemo already, and I couldn't wait for it to end! Its just another step I guess but a step into the next unknown! Feel like a flippin' spaceman with all this unknown stuff!
I'll probably need a diet club too by the end of treatment... can't stop eating even with fat tongue!
Paulus - so glad i hadn't offended you or anyone else, would hate to think I had as you guys all keep me going!!. I don't know how to delete either, I'm forever editing my posts as my tablet makes up the craziest words (you've probably all noticed.... I can spell really...)
Nooo Kip, you didn't offend me at all - in fact what I was writing was waffling on, and when I read it back, I thought I might upset or offend someone!!! Is it me that if we want to remove one of our own comments, we have to just delete all the words using the 'edit' facility? or am I missing a 'delete' button somewhere?
My dear Kip, having seen you here since I first ever looked in, I think you are too lovely to ever offend anyone. Hugs aplenty x
Cdc so glad you are getting somewhere with the hospital, its just a shame you have to do it in the first place but its verh important we feel listened to and answered properly... And as you said if OH comss away feeling the same then it cant be right! Hopefully with a new onc in place things will improve!
So day 3 of 2nd T... So far ok, constipation again but lactulose sorting that, sleepness nights as usual... I spent a good few hours going through the alpahbet trying to remember the name of some crisps... Turns out they are Tyrrels... No idea why i needed to know that but my brain wouldnt stop! Had first injection last night, so far ok, no pain. Bit of indigestion so slurped some gaviscon znd now eating breakfast ready for more steroids but down to 4 a day today. Salt water washes after every meal too so a lot to fit in...
Hope everyone doing ok. Ktk hope the toilet issues rectifie and cdc hope the sickness sorted too.
Yes that news has really shocked and saddened me too Kip, so young and with a little boy of only two. I was only reading a little while ago that she thought she had less than a year and then yesterday only days, it's so sad.
On a personal level it upset me as her bc is TN like mine, but as you say, there are good news stories out there. I personally know of two ladies who had TN bc and are 6 and 10 years clear.
Thank you for your big hugs Kip and sending one back x
Hi all, just had to say the sad news story regarding the lady with breast cancer... Rachel something... Has really rocked me... So wanted to send big hugs and positive vibes to everyone. Tryjng to remain upbeat and remember we never hear of the good news stories do we? They are
out there though!