Well, drats: my liver enzymes are still too high -- and way too high, though lower than last week -- so another blood test today and no chemo. Actually shed a few tears in the chemo day unit when they told me I couldn't get treatment today, and that it might actually be pushed out to next week, since I have to have the first cycle of TPH over 2 days, so if I'm not cleared to start Thursday, it'll have to be Monday at the earliest.
My post-chemo surgery ideal date was already bumping up right to Christmas/New Year's Day; now it's right on top of them. And of course, I really, really want to continue with chemo -- most especially the HER2-targeted drugs (the PH of TPH), which when given together, pre-surgery, often shrink tumors up to nothing. I so want the right breast IDC/DCIS to shrink up, as they are vast, impalpable, and invisible, except to MRI. I don't believe they'll help with the LCIS on that side, but I'll take what I can get.
Fingers crossed that my liver rebounds. The combo of chemo, antibiotics, a possible bit of dehydration because it was hard to refill my water bottle on some of our hikes, and my cheeky half pints over vacation has clearly hurt my liver -- though I have no symptoms, beyond the elevated ALT. Sigh. Now completely, utterly off alcohol -- not a single cheeky half pint -- til December, when I finally (hopefully) finish up my 4th cycle of TPH.
reddi thankx for mouth tips, i started salt wash on Saturday so will see how that goes, apparently T does seem to affect mouth more than Fec.
Juju glad to hear the tumout has shrunk that is fab makes uoj feel chemo all worth it hey. Good luck jn stowmaket.
Ktk .. i have the usual steroids (8 a day foe 3 days then 4 a day for 3 days) anti sickness for 2 days, 5 days of jabs, flux stuff for oral thrush (10 days to start as soon as mouth starts gettjng sore) anti biotics for 10 days startjng day 5, as and when sickness tabs although havdnt needed any ao far on T, a d paracetamol is needed for pains! Got to try to remember what to take when.
cdc ... Writmg your complaint down is the right way to go. Gettjng everything out will ensure uoj know exactly what you want to say and you should bw bw able go request new onc, its your body and this is a time uou need the best support and to feel you are bem g looked after and can put uour trust in the doctors. You have already been let down in the past, dont let it happen again. Patienta have rights!!!
So far T ok, did t sleep well, hot sweats and steroids combo but otherwise ok so far. Jabs stsrt tknight so will wait for the joys of that.
Have a good day all, im working so hopefully stay awake!
Aaaagh! Just managed to lose a long reply with individual replies to everyone. Very frustrating.
wiol try and summarise:
Jujutsu- great news about the shrinkage. Good luck on FEC.
reddi Sorry to hear of delays. Hope chemo can go ahead today. Thanks for good advice regarding pg mouth care.
Kip Glad you had some good times on your birthday. Hope you are faring okmafter yesterday’s T.
ktk The diahrroea soinds norrible especially as it’s been keeping you awake. Hope it abates soon.
How did the dog sitting go Sally?
Hooe your OH is feeling better Lisa Marie and you manage to avoid catching anything.
LJ How are you after your hospital stay? Much improved I hope.
my nausea is now minimal. Yahoo! Just working out what to put in my complaint to PALS. I’m very unhappy about the service as have received at my hospital and I’m hoping if I get things down in writing I’ll be able to discuss things rationally when I have my meeting. I really am considering changing my oncologist at least or asking to be seen at another hospital but i”m not sure if that is allowed and it’s certainly not advised for cancer care. I did end up getting a second opinion years ago regarding my ‘birth injuries’. So glad I did as I would have been doing ruddy pelvic floor exercises till kingdom come if Id stayed at the original hospital. I asked for a second opinion at a different one. Thank goodness I did as the consultant informed me I had a prolapses which requires surgery and no amount of pelvic exercises would have rectified them. I could do without the hassle of making a complaint but I just want someone to listen! My BCN is wonderful so
@Kip I didn't have any mouth issues on FEC, for which I entirely thank my breast cancer nurse, who suggested the following regime: immediately after all meals and snacks, swish water around mouth then brush teeth -- using kids' sensodyne toothpaste (anti-acid) and a baby or toddler extra soft toothbrush used gently. Then follow with either Corsodyl (5 minutes after brushing teeth) or warm bicarbonate of soda / salt mouth washes. I tend to do latter when I have time -- full 8 ounce mug with 1/2 tsp of bicarbonate of soda and about 1/8 tsp of salt. I brush teeth, gums, cheeks, roof of mouth, and both sides of tongue (as possible). And I very gently floss when needed.
My nurse also suggested a brand-new toothbrush every week, which I couldn't stomach (I have seen albatrosses choking on toothbrushes). So I bought 2 bamboo-handled toddler toothbrushes which I boil-sterilize on alternate weeks.
As I said, this worked for FEC, despite neutropenia. It may not work on T, but I am going to keep it up.
[Edited to fix a couple doozy phone typos!]
Oh reddi how annoying. Thankfully my bloods were fine,. Neuts aere back to 3 nd liver ok again, she said its all the drugs its dealing with. 2nd T went well, no problem with veins, anothsr nurse who agreed dont let doctors try to take bloods! Leave it to the nurses. She even said my veins were good!! All administered jn 1.5 hrs and back home with an ever growing goody bag, steroids, anti sickness, more steroids for next chemo, jabs, oral thrush tabs and anti biotics!!!! Just got to work out whats due when!!
She did say that as i sufferedwith mouth issues last time i am likely to again but hopefully hit it eaflier with meds and get it sorted!
Hope you get it started tomorrow Reddi a d dont have anymore delays
Well, phlebotomist didn't call me in for bloodwork til 11:30am, despite my arriving at 10:15. Because they won't get results til 1pm or so, they cannot proceed with chemo today as first Perjeta + Herceptin takes a long time to adminster -- plus a lot of time to observe whether you might be having an allergic reaction. So I have been sent home.
Hopefully, the results this afternoon will allow me to go ahead tomorrow and Wednesday; if not, I've got to reschedule a bunch of work calls on Thursday. Grumble. And I won't finish up chemo before our 10th wedding anniversary. Grumble x2.
Thanks everyone for the birthday wishes. Managed .lovely day with family, despite hot flushes which seem to come with starting steroids also had hit n miss sleep last night but parr for the course. Had a lovley chat with my fellow breast cancer pal who is 2 years clear and she spurred me on to get chemo done, .
jen thanks for the positive news about 5 & 6 cycles, hopjng I get the mouth undr control this time. Ktk sorry tk hear the toilet issues are persiting ill be on the loom out for that this time round. Now just waiting for the expected phone call to say neuts low.. but fjngers crossed its all ok a d ca .get this done.
Have a good day all
P.s. juju ... Havent Havent heard from you for a while... Hows things?
Happy birthday Kip! Just wanted to give you some reassurance about T, I found chemo's 2 and 3 much easier than the first one x
So glad you were able to enjoy your meal Kip.
im so shocked at the doctor taking bloods form your ankle when you had to stay in hospital. Thank goodness you had no issues today. I’m starting to think the nurses sometimes have more of an idea about things than the suppose d specialists. My chemo nurses and designated BCN have been far more helpful aand willing to listen than my oncologist. Hope that you have fewer SEs on this cycle of T. Did you have a chance for any birthday celebrations today??? Do hope so xxx
Hi indian meal was lush, mouth back to normal but not dor long I guess!! Glad you got out and about clare. Blood tests done just have to wait til tomorrow for results, nurse had no problem finding a vein so that was good, she said docs are useless at taking bloods and had never heard of doctors laying on the floor whilst I stood up to take bloods from ankle!!!
Happy birthday LJ nd glad you escaped Casa NHS! im startting to worry about nsxt T on Monday but have lovely jndian meal tonight with family so going to focus on that for now.
Not sure if i get Piriton or not, certainly doesnt make me sleep if i do, shame woukd love a kip jn chemo!
Have a fab day everyone, now off to hospital for pre chemo bloods. Fingers crossed neuts back up!
Enjoy the wedding jaq and party til at least 8.30... be a devil
Well done for getting through T Number 5 Sally.
LJ so glad to hear you’re out of hospital.
interested to hear everyone’s food experiences on T. I’m just hoping not to feel nauseous! Having thought I was over the nausea - it came back yesterday! Thankfully I’m much better again today.
We are hoping for a last minute trip to Rye tomorrow and if possible a trip to the beach at Camber Sands.
Better go and get some sleep.
Ps does evertoune get Piriton? I’ve not had it but when my daughter had some when she had chicken pox it sent her completely round the bend! She was bouncing off the walls at midnight and I was so surprised as I’d heard it makes you sleepy. Turns out in rare cases it can make people hyper. Hope I’m not one of them. We can’t use it for her anymore.
I'm finally home ladies! Exhausted but home. Have a number of horse pills to take which I need to get my head round! Have to say I'm almost scared to take my temperature again!
I'm convinced this was all caused by DH having a cold last weekend and me picking up enough germs to raise my temperature but not enough to come out in a full blown cold. Please be extra careful if the rest of your household pick anything up.
Your posts do make me smile! KTK - just loving the food combo.. what matters most is if you can taste it go for it! I've tried all sorts.. I ate a whole packet of bourbon biscuits and couldn't taste a thing but still ate them anyway! I've tried marmite, peanut butter, jam, honey... all of which are passable but not great. Although taste buds pretty much back now, but a bit slimy still. The Vit C tablets fizzing on your tongue do help a bit though. Mash potato tasted the worst, which is a nightmare because its one of my favourite things. I did find soup a god send though, it slipped down and didn't taste too bad, added lots of pepper too.
Lisa Marie - oh dear quarantine for both of you then. You'll be fighting for the thermometer! Glad you are feeling ok, fish pie sounds lovely... making me hungry. I'm feeling back to normal now but unfortunately chemo 5 on Monday so it all starts again. I have the injections this time too so wondering what extra problems they will bring. At least I only have 3 weeks until the last one... can't wait to walk out of there.
Whilst I was waiting for my Oncology appointment on Wednesday I heard somebody ringing the bell for the end of radiotherapy and everyone was clapping and it made me so emotional... I am definately gonna ring that bell long and hard when I get there!!!
LJ I've got everything crossed you get out soon. Funny isn't it.. my temp was 38.2 before I got to hospital but then went down to normal and stayed there forever more... typical. I'll wait a while next time before i paniccall the hotline. Good shout about using salt water before chemo even starts, I'll do that from this weekend. Although my tongue is still coated and burnt feeling. Kip x
Fortunately they did find me a nice side room at 2am so here I am, quite comfortable actually!
I've seen the oncologist this morning. She's happy that if my temperature continues to stay normal (there's not been a raised reading since 9pm last night) I can go home in the morning! Cross everything for me! I also talked to her about the bone pain I had last weekend and she's prescribing OralMorph as an extra.
I too have the T trots and I'm ashamed to say I had a very embarrassing accident this morning and I cried with sheer humiliation even though the nurse was lovely.
My mouth hasn't been too bad. My sweet taste buds have gone and my tongue feels burnt but I've had no ulcers or soreness fortunately. My tongue was quite coated, but I noticed this morning that's all gone and it's all pink again. Progress! I started salt water mouth washes twice a day from two days before chemo so I shall try that again next time.
My my nails are still intact though I wonder if a couple of them feel a little sore. They are painted dark and clipped very short. I'm using plenty of hand and nail cream so hope that helps.
Hugs ladies - we can do this and we will!
Oh good lord, such a lot happening.
lJ so sorry to hear you are in casa NHS... Hope you get a bed. I at least had A nice side room and after 2 days once they established i didnt have an infection anywhere i could go home even with neuts of 0.6, i had been given anti biotics for 2 days too si fingers crossed for you.
Ktk isnt the mouth nasty? I am finally feeling almost back to normal but tongue still feels burnt but i can taste again if only for a few days until Monday. Have you tried tinned ; pineapple thats supoosed to help with carpet tongue and OnC suggssted putting a fizzy Vit C tablet (the sort yiu dissolve in water) on yiu tongue and letting it fizz to help get through the slimyness .Salt water with bicarbonate soda in helps a little too.
Cdc i do feel for you with the sickness, thats such a horrible thjng to put up with. Surelynuou must be due to be SE free witb T.. ill keep fingers crossed.
embolorry, oh no T trots... Ill look forward to that then... What else can this T give us? I have strange thumb today must keep an eye in it and let onc know if it gets worse, oh joy!
Hooe everyone manages an ok day today, im working so back to some normality and have decided to work through chemo week next week, getting fed up of being patient, and i work at home so near the toilet for any unpleasantness that may happen!!!! Might regret it but im gonna try!!!
Take care everyone xxx Kip
@LJ When my neutrophils were 0.03, it took 2 nights/days in isolation and 2 gcsf injections (one each night) to get me back to 1.0 and released. Last Monday, when my wrist was swollen, tender, and red, my neutrophils were 0.1, but because I didn't have a fever, they let me roam in the world (well, I stuck to my flat mostly, for the first 5 days) with a week of antibiotics and 5 gcsf injections to take at home. It might be worth asking the doctors what options you might have. And know it will (eventually) pass, even if they keep you in hospital for a couple days.
@cdc Visit with my sister has been great. We're off to Salisbury, Old Sarum, and Stonehenge shortly -- none of us (including OH) have ever been, and today is my sister's and my OH's birthday, so sure to have a little pub feast. Last Saturday, we took her up to Epping Forest, where we popped in Queen Elizabeth's Hunting Lodge and walked through the woods, with a pub stop mid walk. Then we got in 3 good days of walks in the Wye Valley -- from Chepstow to Tintern (where we were staying in a B&B) with fabulous views of the river, then around Tintern Abbey and Brockweir (so getting a bit of the English side, too), then from Chepstow Castle along the Wales Coast Path (about 9 miles, but most of it was flat). Yesterday was our day of rest -- pre-chemo onco appointment at the hospital, Camden Market, some yarn shopping (Loop), and then Indian supper in Drummond Street. Not sure what we'll do tomorrow -- it's her last day before flying home to Colorado, and none of us know if we'll be so exhausted we want to lounge around a museum or do something more ambitious. In any case, I suspect we'll cap things off with kebabs on our predominantly Turkish high street.
Then my first TPH on Monday (Perjeta and Herceptin day) and Tuesday (the mighty docetaxel)! I've got my dark nail polish in hand, and a supply of Senna for the heavy steroid days, but will have to think about what to do if the opposite issue affects me, too. Thanks to all for the heads-up.
Only bummer of the week is that my mid-chemo MRI results weren't in hand for my appointment yesterday. (MRI because right breast tumor[s] are not visible on US, and only the microcalcifications show on mammogram.) So I'll have to wait 3 weeks to find out if anything shrunk in response to the FEC.
@Kip @ktk @cdc &c.: Hope your side effects abate soon! Such a range of effects we're having. They weren't kidding when they said everyone responds differently.
Hi I’m another I’m having an early morning check in because I can’t sleep. Was doing ok but my OH woke me up when he went to the loo and hear I am an hour later and still wide awake while he is gently snoring away!
LJ So very sorry to hear you’re back in hospital. I hope your neutrophils are back up sharpish and you get out of there ASAP.
ktk glad to hear you are feeling a bit brighter now but what a horrible time you’ve had. It’s such a shame that your ordeal happened during th LGFB session too! I’ve been warned about the diarrhoea. Seems that if chemo doesn’t get you one way with the constipation, it will get you with the other. The foul mouth and carpet coating soinds horrobke and a pretty common occurrence. Don’t like the idea of not being able to taste anything either. My nausea is finally subsiding but it ps horrible not being able to get pleasure from food and must make getting adequate nutrition difficult. Has anything tastes ‘reasonable’? Hope you can get back to sleep.
Well, neutrophils are 0.22!!! Just waiting to be put in a side room.
Have to say this is all fairly rubbish and I thought I was getting better!