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June 2018 Chemo Starters

reddi
Member

Re: June 2018 Chemo Starters

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.

Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi everyone.

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!

Kip xx

cdc1811
Member

Re: June 2018 Chemo Starters

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 

 

Jujustu3
Member

Re: June 2018 Chemo Starters

Hi ya Kip. Sorry havent been on here for a while. I have my last weekly chemo tomoz so thats 12 weeks now! Switch to FEC next week which im going to have in Stowmarket as they have an outreach clinic there. These first 12 weeks have gone quick so hoping next lot go just as quick!! Had good news last week, my tumor shrunk from 6cm to 2.8cm in ten weeks. Delirously happy with that. Long way to go still but at least some gud news amongst all the crap we have to deal with x
reddi
Member

Re: June 2018 Chemo Starters

@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!]

ktk
Member

Re: June 2018 Chemo Starters

Glad it went well Kip. What new meds have they given you? Kx
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

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

Kip

Xx

reddi
Member

Re: June 2018 Chemo Starters

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.

Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Reddi i had that too on cycle 3, liver was higher but neuts ok, they checked it with thw onc and she said it was fine to proceed as was only slightly raised and was due to all the drugs we have to take, next session it was fine,fingers crossed
reddi
Member

Re: June 2018 Chemo Starters

Belated happy birthday, Kip and LJ!

Just got my first call to let me know my bloods aren't up to par pre first TPH (PH to be today, bloods permitting, with T tomorrow). And this time it isn't my neutrophils -- it's my liver. I guess my little half pints of 3.8% ale while my sister was visiting may have been a mistake... 😞 Live and learn, as they say. Fingers crossed that they have improved since last Wednesday.
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

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

Xxx kip

P.s. juju ... Havent Havent heard from you for a while... Hows things?

ktk
Member

Re: June 2018 Chemo Starters

That’s good to hear Jencat. I have been up all night with diarrhoea again ☹️
Jencat
Member

Re: June 2018 Chemo Starters

Happy birthday Kip! Smiley Happy Just wanted to give you some reassurance about T, I found chemo's 2 and 3 much easier than the first one x

cdc1811
Member

Re: June 2018 Chemo Starters

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

Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

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!!!   

cdc1811
Member

Re: June 2018 Chemo Starters

Hope your neuts were back up Kip and that you’re mouth is far less sore so you can enjoy your Indian meal. Have a super special day tomorrow despite the b***dy steroids.

We managed to get to the seaside today! Only a quick jaunt to Camber Sands where we flew a kite and paddled, and then lunch in Rye. It was so lovely I’m the sunshine and I I only had a few bouts of nausea so a much, much better day,

Take care everyone xx
cdc1811
Member

Re: June 2018 Chemo Starters

Hope you’re enjoying your niece’s wedding celebrations Jaqu!  All the best for Monday xxx

Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

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

JacqB
Member

Re: June 2018 Chemo Starters

Good morning ladies
I hope everyone able to enjoy the weekend. It is our niece’s wedding day today which will be the perfect way to take my mind off surgery on Monday! 😬 I plan to drink champagne and dance till ooh at least 8pm! 😂
Happy Saturday 🎊🥂💕
Jacq x
cdc1811
Member

Re: June 2018 Chemo Starters

LJ It’s your birthday today isn’t it?! I do so hope you’re able to have a good birthday weekend now you’re out of hospital. Sending my very best wishes xxx
cdc1811
Member

Re: June 2018 Chemo Starters

Reddi Sounds like you’ve had a wonderful time with your sister. So pleased you’ve been able to get out and about. I love Tintern. Hope you’ve enjoyed your last day together. Good luck for next week, I’ve has my nails painted a dark navy. Hope it helps. So frustrating that you’ve got to wait so long for the MRI results.

Take. Care xxx
cdc1811
Member

Re: June 2018 Chemo Starters

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.  

xxx

LJ
Member

Re: June 2018 Chemo Starters

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. 

 

LJ

SallyG63
Member

Re: June 2018 Chemo Starters

I'd never had piriton at all up until a couple of years ago when I bought some for an allergic reaction (it's a thing I get that swells my eyes once a year) while on holiday. Went fishing with my husband and sat down to read while he fished. He said he was talking to me, turned round and I was snoring my head off. I knocked me right out I've not taken it enough in the intervening period to build up any sort of tolerance to it. Luckily my chemo unit was pretty quiet today. They put the Paclitaxel on, I go to sleep and they wake me up an hour later when it's done. 🙂 At least it's stopped my gnat bites itching.

Ktk, must be nice to get out for lunch. Did you have anything nice?

My daughter is bringing her dog Milo round later. I forgot I said I'd have him for the weekend while she's at her friends in Fleetwood. He is young and full of energy and he runs my Ruby (10) ragged. Luckily she's bigger than him and will tell him off when she's had enough. We just have to split them up at bedtime.
ktk
Member

Re: June 2018 Chemo Starters

The Piriton infusion did make me fuzzy for a while which was nice. The nurse said it usually knocks the men out!! Had a nice day today. Picked son up from his travels then out for lunch. Very tired though. Love to all Kx
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

well done, another one ticked, I would love a sleep when I have mine, but way too much going on in the unit for any sleep to be had!
SallyG63
Member

Re: June 2018 Chemo Starters

Just done T number 5, as usual slept through most of it. Finally realised why, cos they give me, among other things, a piriton infusion to counter any possible reactions. That stuff always knocks me out.
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

T-oxic Tongue foods is a winner!
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

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!!!

Kip xx

 

Shi
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi Lisa Marie, sorry to hear oh starting with something, quarantine and keep eye 👁 n yourself, if you start with it too please rapid response it, you are not far off now, keep safe ❤️❤️❤️💕💕Shi xx
RedRose
Member

Re: June 2018 Chemo Starters

My supper tonight marinas pie, fish and sweet corn in parsley sauce, potatoe topped with petit pois. Can still taste for now so at least that’s a bonus but not sure all that food was a great idea xx
RedRose
Member

Re: June 2018 Chemo Starters

Hi all, seems I’m not feeling too bad atm just tired and a bit achey, but been on and off all day. Which is more than I can say for the other half. Straight in from work into bed, feeling headachey and weak and temp of 37.9! Oh what joys!!! He isn’t going to work tomorrow on my orders and have been to shop and dosed him up on Beechams. By my reckoning my side effects should kick in tomorrow if they are going too so think we are both going to be fighting for the loo one way or another. I’m going to quarantine the house and hope for the best, but unfortunately I don’t think the step kids will be able to come this weekend with the way we both are 😔 xx
Shi
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Peter Jones did wonders for that reggae reggae sauce. Another fav on the t was peanut butter and marmite mix, sounds yuk but it did work amazingly 👍💕💕Shi xx
ktk
Member

Re: June 2018 Chemo Starters

Maybe I could market my sauce as a cure for T-oxic tongue! 👅🤣🤣
Shi
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Ktk, you make me think of the fast food song, a Pizza Hut, a Pizza Hut, Kentucky fried chicken and a Pizza Hut 😂🤣😂🤣😂you just have to go with what works and you hit upon the strangest combinations, a few ladies swore by samosas while on t 💕💕Shi xx
ktk
Member

Re: June 2018 Chemo Starters

I also had some fish soup, which I could TASTE!! Kip my taste has come back. Not completely but I can taste 😁😁😁
SallyG63
Member

Re: June 2018 Chemo Starters

Blimey, apart from lemon juice and avocado, that's just about a combination of lots of foods I don't like.
ktk
Member

Re: June 2018 Chemo Starters

LJ I do hope you are ok and out soon!
CDC Metoclopramide also works for me as the A’s and when anti sickness.

So ladies, I thought I’d tell you what I have just eaten, not that I could taste it! I took a pot of shop bought prawn cocktail to which I added French mustard, balsamic vinegar, peri peri sauce and lemon juice. I then mixed this with kidney beans and butter beans, chopped celery and onions for crunch and avocado!! OMG what is happening to us?!! Kxxx
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

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

LJ
Member

Re: June 2018 Chemo Starters

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!

 

LJ

Shi
Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi ladies also try upping your carbs for the t trots ❤️❤️ CDC please speak to your team about the nausea they will try you on variety of meds till they get right combo for you, please don’t suffer you don’t need to darling. Have they tried azykeo and metroclopromide of you yet? That worked brilliant for me. Hope that helps 💕Shi xx
Kip
Community Champion
Community Champion

Re: June 2018 Chemo Starters

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

reddi
Member

Re: June 2018 Chemo Starters

@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.

ktk
Member

Re: June 2018 Chemo Starters

Hi Sally. You may have an allergic reaction. I have bite like spots appearing too. Try some Piriton. They gave me a Piriton infusion with the T and suggested that I could take tablets to help with allergic reactions. It should stop the itching at least.

Morning ladies. Looks like a lot of us were up last night. I did fall back to sleep for a couple of hours. Hope you all have a good day. Kxx
SallyG63
Member

Re: June 2018 Chemo Starters

Morning all,

Hope everyone finally got some sleep after the middle of the night postinato frenzy.

LJ, sorry you're back in hospital. Hopefully you'll be able to get home today.

I'm still pretty much side effect free. Had a little bit of bone pain but nothing a couple of cocodamol can't sort out. I have been attacked by vampire gnats though and my neck is an itchy, lumpy mess. 😞

Have a good day all, wrather is perking up today just in time for the weekend
cdc1811
Member

Re: June 2018 Chemo Starters

Hope you manage to get crack to sleep Embolorry. The T part of treatment really seems to be affecting everyone pretty badly, I’m feelong very nervous about starting my T regime on the 11th September, Hope the injections don’t cause not nice!

Kip I hope your mouth improves in time for your birthday! You don’t seem to be having n break from SEs on this cycle of T. Now you’re having to have the injections too. That’s so rubbish but I hope they help. Hope the meeting with the oncologist is helpful in making a final decision with regard to the treatment for the nodal involvement. I can understand you wanting to take a belt and braces approach. Very disconcerting to to hear the discrepancy I’m the sizing of the lump but yes it’s out now thank goodness.

Lisa Good to hear you were able to get away before starting T. How are you faring after your first dose? Minimal SEs fingers crossed. Hope you are getting plenty of rest. I’ve been told that’s the key to getting through this part.

Reddi How are you? Hope you’ve had a lovely time catching up with your sister.

Sally how are you getting on? Great to hear you’ve had some better nights sleep.

Just thought LJ Sincerely hope you are out of hospital and feeling better in time for your birthday and maybe even get a chance for a few nights away in the caravan.

I’ve been doing much better since yesterday. Felt worse this cycle than any other due to the nausea but (everything crossed) it seems to have abated somewhat, Really felt like saying ‘stuff your chemo’ to my team as having that level of feeling sick and retching, despite taking the steroids, is almost unbearable. The T sounds horrendous but I’m hoping that I won’t have the nausea to contend with alongside all the other ‘delightful’ SEs.

Take care everyone, I think of you everyday even if I don’t always post. Sending huge hugs and best wishes for brighter days.

Off to try and get a few 💤 xxx
cdc1811
Member

Re: June 2018 Chemo Starters

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.

 

 

 

 

ktk
Member

Re: June 2018 Chemo Starters

Hi LJ. Sorry to hear you are back in prison, I mean hospital. This is really giving you a rough ride. We are with you through the night, as you can see!!

Em, I have had a very lazy day recovering from yesterday’s ordeal. I feel a bit brighter now so I hope I can get up and do something today!!

My mouth is also foul. It has a nice furry coat and I can’t taste much. Had a small gin and OJ last night( for medicinal purposes ) and it could have been anything ☹️ Still at least everything I eat and. Drink isn’t burning so much.

Hope most of you are sleeping. Lots of love Kxxx
Embolorry
Member

Re: June 2018 Chemo Starters

Oh no LJ, sorry to hear that you are hospital, I hope you at least have a bed and have moved from your trolley!!! Are they giving you a clue about when you might be able to leave??
KTK, how are you doing? I am also suffering with the T trots (which I didn’t have on the first cycle), this doxetaxel really is the gift that keeps giving isn’t it!
My mouth feels like I have no taste and very sore and dry. No nail pain yet though.
I start the injections tomorrow evening and so will see what pain and head fog that brings!
Kip, how’s your mouth???
Anyway will try and sleep now,
Sending love to all, we are getting though it,
Em
Xxx
LJ
Member

Re: June 2018 Chemo Starters

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!

 

LJ