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May 2017 chemo starters

treehouse
Member

Re: May 2017 chemo starters

Great news Mai. If you are anything like me, I hit a wall as soon as steroids stop and I only perk up when injections have finished. Be kind to yourself.
Are you doing injection? I have 7 days.
I feel so much better today, I managed a short visit to work !!!!
Mai7
Member

Re: May 2017 chemo starters

Hi ladies, thanks for your support and good wishes. I'm back home after first Docetaxol (chemo no.5 of 😎 and feeling good. Thankfully no allergic reactions and no sign of side effects yet. All went well.  I'm pretty buzzed on steroids and only managed about an hours sleep last night - took me until 5am to finally fall asleep and had to be up at 6.30am!  I'm feeling a bit like the Queen song "Mr Farenheit". It's all good fun until the post-steroid apocalypse in a couple of days! I'm now going to eat a feast of mushrooms and melons! πŸ‰

 

Trisha, thanks for sharing those markers for normal bloods. I've made a note of them, very useful to know. πŸ‘πŸΌ

 

Treehouse, yes, around my lump-breast hurts sometimes, the surrounding tissue and lymph nodes. I hope it's the lump monsters chomping - that would be positive pain to be embraced! I get paranoid that the tumour is attacking my chest wall or my heart is under stress but as the lump is slowly shrinking it must be the lump-monster-chomp! Hope your appointment with oncoplastic goes well. πŸ‘™

 

AnnieA, how are you doing after your first taxane? Are you feeling a bit yewy yet?

treehouse
Member

Re: May 2017 chemo starters

Ooh letter just arrived with appointment to see oncoplastic surgeon next wed.
Looks like I will have to start getting my head around the next phase 😳.
Big girls pants!
AnnieA
Member

Re: May 2017 chemo starters

My chemo unit is the same katie I think it's lovely when it's like that it just feels more intimate doesn't it x
katie11
Member

Re: May 2017 chemo starters

Chemo monsters ha!

Good luck today ladies!!!

Not feeling too bad this morning after first weekly withe no steriods, slept all night too, always a bonus. I don't have injections on weeklys rosie so will see how I go.

My ward for chemo is very small. There is a Christie centre on site for certain cancers but breast cancer and one other can't remember is in the breast unit so very small but nice as it is the same 5 nurses every week. They are quite happy with patients coming early /later to appointments. So when have a 9am start they are quite happy for me to drop boys off at school and then go in. Feel like I know the nurses quite well now and one even went to school with my sister.

Hope everyone has a good day x
treehouse
Member

Re: May 2017 chemo starters

Good Luck today Mai and Rosie.
One more ticked off.
I have onc appointment this afternoon and Look good feel good session tonight πŸ˜πŸ‘πŸ’„πŸ’…πŸ»πŸ’‹
treehouse
Member

Re: May 2017 chemo starters

Hell I am there for hours I could copy them in myself if they pull up my notes. might try that next week.
Does anybody else get pain in their lump? I get it every cycle for about a week. I can't sleep on my front without painkillers. I imagine little Chemo monsters are chomping it!
Trisha69
Member

Re: May 2017 chemo starters

Rosie. Ask them be interesting see id fuises the same. Good luck today!
Rosie65
Member

Re: May 2017 chemo starters

Ooh trish I'm jealous they don't give me creative or bilirubin levels!

Not sure if levels are individual though based on what you were at the start, so should maybe read with that in mind

 

Was told HB should be 120-140 (but mine has never been above 120 the whole time. It was 134 pre chemo)

WBC >3

platelets >100

neuts>1.5

 

That's why I was freaked out last week when levels were

HB 93

WBC 43.9

platelets 580

Neuts 42.5

 

Nobody seemed concerned and the nurse said they had been checked. I thought he'd written them in incorrectly. I guess it's better that they're high, apart from the HB and I shouldn't get an infection with those neut.  but they still gave me 5 injections.

 

Katie - do you have injections?

Oh well off for my weekly dose now so I'll find out this week's levels. Good luck to all having treatment today

Raitchr
Member

Re: May 2017 chemo starters

I have started showing up 1 hr earlier to my appmts so we can park but also if I tell them I am there they get me started early. If it is busy then I go to Maggie's cancer house on site and eat my lunch and have a free coffee and cake and wait to my allocated slot. My 1st appmt was late afternoon but has moved gradually earlier, next is 11.20am so it does seem to work if you play by their rules and be on time. My chemo ward writes down what time you arrive, when you were called for treatment and when you leave, maybe for their stats or maybe to log your timekeeping!!

 

 

Raitchr
Member

Re: May 2017 chemo starters

My T chemo took approx 1.5 hrs plus the usual fiddling around prep before and after. All my chemos have been through a pump with a saline bag attached. T takes 1 hr to pump unless you react to it then it is slowed down once you have recovered. Mine also does a 20 min fluid flush through veins afterwards.

 

A lady did react immediately to T next to me last week. She had sudden high temp, very red in face, backache, shortness of breath. It was obvious straight away so the 4 nurses sprang into action pronto and was dealt with. Her treatment was paused, Onco was called to assess and after having high does of antihistamines it was to be restarted. Only problem with that was she had to stay on chemo unit for 6 hours post chemo to check for further reactions. My nurse did say before she pressed the go button on T that I must say if I feel different, strange, funny, poorly etc. 

 

Also they use a cannula with an extension on it so that they can administer drugs ahead of the main drip if you need emergency meds.

 

Heather

Trisha69
Member

Re: May 2017 chemo starters

Hi ladies. I insist on the results being put in my book. Makes me feel a bit more in control. Asked what 'normal' range should be. So here goes.

WBC between 3-6
NEUTRO between 1.8 -7.5
PLATELETS between 150-400
CREATINE between 44-80
BILIRUBIN (liver) between 5-17

At my Sepsis stage when in hospital my Neutro was 0.5 & platelets 51 😞
11 days later 2.2 & 261! How are bodies repair eh!
Mai7
Member

Re: May 2017 chemo starters

Treehouse, I'm told treatment will take an hour by auto drip feed, no manual pumping like the FEC. I don't know if they keep you a bit after to check for allergic reactions or if that would be obvious during treatment.  Wow, you have a long treatment, you must be powering through reading books?

Mai7
Member

Re: May 2017 chemo starters

Lol, Treehouse, read my post again. I accidentally hit "post" after typing in "I've taken all of my steroids" I wanted to hit cancel as I forgot some if the conversations and wanted to peep back again! πŸ˜‚

treehouse
Member

Re: May 2017 chemo starters

Well done Mai. I usually take my second dose with me to treatment as I am there so long. What time are you in and how long ?
Mai7
Member

Re: May 2017 chemo starters

I've taken all of my steroids WoflfEE ready for morning. I'll let you know how it's going tomorrow.

 

Im in at 8.45am! I must be getting the early slot as they know they can rely on me to show up on time, I reckon. If people show up late for the early slots it throws the rest if the day out. Your Dad must be all too familiar with that Raitchr?

 

Rosie, Same as Raitchr, I just get appointment times and dates. I'll ask the nurses tomorrow about blood levels.  Would be nice to have a card with bloods on though, but I guess it's just even more admin for the nurses. 

 

Treehouse, thanks for the blood minimum levels, nice to know

treehouse
Member

Re: May 2017 chemo starters

I am guessing if they went ahead with treatment then levels were acceptable Wolfee.
I was told below the following was an issue:
neutrophils below 1.5
RBC below 90
Platelets below 100.

Only know this because I was too low and they had to keep checking.
WolfEE
Member

Re: May 2017 chemo starters

So I can see the levels recorded but doesn't say what is a 'normal' or ok level?? But then it has a signature and a go ahead with treatment
treehouse
Member

Re: May 2017 chemo starters

I have a page in my blue folder for blood test results but no one ever fills it in. I wish I had!
Raitchr
Member

Re: May 2017 chemo starters

I just have a card which shows dates and times. I did notice my blood results on the clipboard which is checked several times during chemo treatment. One nurse sets it up, another double checks my wrist band against the details on sheet, they must keep these sheets, assume it goes in my onco file.

WolfEE
Member

Re: May 2017 chemo starters

Off now have a read through my chemo book see if it gives anything away.
Rosie65
Member

Re: May 2017 chemo starters

Looks like we'll all be getting some Epsom salts!

 

Yes all ready for weekly number 3, my onco told me about all sorts of side effects for taxol - bone pain, peripheral neuropathy, tinnitus  etc and I was really worried  but I've  only had mild diarrhoea and nose bleeds which she didn't  even mention

 

Do you not have a chemotherapy record book where they write your treatments in and your blood levels?

Thats how I know mine. I have the levels from before chemo when they were " normal" on the first page and then an indication of what would be an acceptable range, although the Hb level has never been in this range and they still go ahead. Then after each blood test they put them in the book

 

Raitchr
Member

Re: May 2017 chemo starters

I got a big tub 500g for under 2 quid from Savers, can't remember exact price as was awhile ago.

treehouse
Member

Re: May 2017 chemo starters

Gonna get me some tomorrow 😁
Raitchr
Member

Re: May 2017 chemo starters

You can do a foot soak in a bucket for 20 mins  if you have a picc line and can't take a bath.

WolfEE
Member

Re: May 2017 chemo starters

Mai7 have you started the steroids ready for tomorrow. I hope all goes well tomorrow I'll be looking out for your updates my 1st one will be Monday!
Thank you, blood clot injections are going in each day I'm still very hesitant and slow but have done a week now!!!!
Epsom salts I'm re-using again I've been an Epsom salt lover for a year and was missing my foot soaks but reading wvwyine using whilst on treatment I had a bath last night and it was bliss they really do help. You need to stay in the water for at least 20 mins so maybe a bit difficult for those with a picc line. I had scent free candles burning and some soft music it was a real treat.
Mai7
Member

Re: May 2017 chemo starters

Just looked up Epsom Salts (which is magnesium sulphate) for constipation, out of curiosity and found this on the NICE guidelines - I probably won't use it for constipation unless I'm desperate and running out of options!  https://bnf.nice.org.uk/drug/magnesium-sulfate.html#indicationsAndDoses

 

 

treehouse
Member

Re: May 2017 chemo starters

Mai lol
I know that feeling. πŸ˜‚
Mai7
Member

Re: May 2017 chemo starters

Great news AnnieA πŸ‘πŸΌ

Mai7
Member

Re: May 2017 chemo starters

Glad you found your silver lining today Treehouse, a proud mummy moment!

 

I hope MJK is doing ok with her sore eyes, and WolfEE with the blood clot management. 

 

i just received delivery of a 5kg tub of Epsom salts which I got on Amazon for Β£10. My ache and pain remedy is at the ready (it's food grade so can also be used for constipation - better be careful on dosage or there may be trouble ahead! πŸ’©πŸ’©πŸ’©) I'd press my own inappropriate button, but wait, we don't need one on this forum or we would be unable to discuss the bare essentials for survival!

 

The steroids are making me feel both exhausted and like I need to go for a run all at the same time. How can that be? Im so wired I can see noises πŸ‘€

AnnieA
Member

Re: May 2017 chemo starters

Back from my first Taxotere, all went well. Had MRI results while I was there and my tumour has shrunk for 25mm to 17mm after 3 cycles so I'm very pleased with that. Now to just wait for the size effects which I've been warned are rough. Oh the joys.
Hope everyone is keeping as well as they can be xx
katie11
Member

Re: May 2017 chemo starters

Course treehouse that's what we are here for! Did you manage to get to the end of annie? Proud mummy moment! Finishing primary school - I dread the day!

Mai I've only just got chemo no 4 out of my head and now have chemo no 5 lol!

Ready for no 3 rosie? It is weird being on weekly chemo but it does seem to be counting down quite quickly. I had my first one without steriods today do will see how that goes. Had a nap this afternoon and feeling ok at the minute.

Im book onto moving forward course too anniej, nurse said it's an important part of treatment. Mine is x2 3 hour sessions. Good luck with the rest of your journey pop back and see us xx
treehouse
Member

Re: May 2017 chemo starters

Thanks Mai. Just watched smallest boy in year 6 leavers show ' Annie' πŸ˜€β€οΈπŸ˜‚.
Pathetic mum leaking on the first number and he had not even got on stage yet!!!
So proud of my strong gorgeous funny children. Actually had a couple of mums come over after and be brave enough to mention the C word. I much prefer when people say what they're thinking rather than avoid the obvious .
Sorry I know I sound down, I'm really not I just have worries and it is easier to share with you lot than keep worrying my already worried family.
Mai7
Member

Re: May 2017 chemo starters

Katie, glad the PICC line is going well for you.

Mai7
Member

Re: May 2017 chemo starters

Had my oncology appointment this morning and bloods are back to normal (didn't ask for the number, don't want to know) so I'm good to go for [Katie, are you ready] chemo no.5!  - my first Docetaxol tomorrow.  I've had both doses of steroids so I'm probably feeling way more positive that I should be about having yew tree extracts injected into my system. I feel like Tigger right now!

 

Thanks Anniej for your continued support even though you could just move on with your rads friends and forget about us in the May starters lifeboat! πŸ˜‚

 

Treehouse, you've had a rough time lately {U} and that must be tough for you but try and wait for your results before you start scenario building.  I worry about the long term damage to vital organs but not having chemo is not an option so we have to stick with the regime.... and so we beat on, boats against the tide,,.... (I just burst into a Scott Fitzgerald quote!). If there is a risk of long term damage there will be medication to help. Like a medical equivalent of weed to slow things down!  Oncologists are probably baffled as to why we become obsessed with nutrition and alternative treatment books and this is why, because after all the treatment is finished its just us left managing the aftermath of our bodies and hoping there is some way we can make it less sucky that it could be in any small way - vitamins, weird teas, some recently discovered exotic fruit from the deepest rainforest, whatever it takes.....

treehouse
Member

Re: May 2017 chemo starters

That's great news Katie glad it's working out for you πŸ˜€.
Keep the good news coming it gives me something to look forward to x
katie11
Member

Re: May 2017 chemo starters

Oh treehouse! Your not having a good time at the minute are you. Hope you pick up soon sending you a big hug.

3rd weekly paciltaxol done with my picc ! Omg why didn't I have this from the beginning so much easier x
treehouse
Member

Re: May 2017 chemo starters

Heart scan done. Should have results with onc tomorrow.
My heart rate is high even when resting, I get tired and short of breath. To be honest I am starting to get worried about the permanent effect of these drugs on my body. This is not side effects this is damage.
I was also warned my blood count would start going down again.
😳 Not having fun anymore
Rosie65
Member

Re: May 2017 chemo starters

Hi all good luck treehouse - thanks for the papaya advice, I'll get one later to go with my cantaloupe melon. I'm definitely having a healthier diet these days. Nose bleeds have cleared up now but more treatment tomorrow, this weekly regime is relentless but at least side effects are not on the same scale as EC.

 

Good luck today Katie and anyone else having treatment. It will be a breeze now you've got a picc line

Anniej
Community Champion

Re: May 2017 chemo starters

Hi ladies, just checking in on you all. Sounds like a tough week ahead for quite a number of you. It's a relentless regime, and when it's all over I think we will be at a loss. My lovely Maggies centre has signed me up for a course about coping with life after cancer. It lasts , I think, six weeks. I'm quite looking forward to it as I don't want to continue life looking over my shoulder worrying and wondering if C is around. Anyway, just wanted to tell those of you, like Mai, that this is available. Stay strong, ladies. Lots of love and luck. X

treehouse
Member

Re: May 2017 chemo starters

Good luck with treatment today.
I am off to brave traffic for an 8:30 appointment.
X
Mai7
Member

Re: May 2017 chemo starters

Raitchr, the weather definitely helps with positivity and being able to get out and do things away from the dense indoor population in shopping malls etc.

 

Treehouse, a pause button would be great, I think they call that "the day before chemo" πŸ˜‚ It's like boot camp for being so regimented with drugs, appointments and SE management.  Life will feel really odd after all treatments have finished, good but odd.

Raitchr
Member

Re: May 2017 chemo starters

I think the weather helps me too, I would have found it so much harder and depressing in the winter, at least I can get out and about without a freezing cold head!

 

Best wishes everyone

 

H

treehouse
Member

Re: May 2017 chemo starters

It must be scary starting a new drug.
I really feel for you ladies. But I know you have already been through so much that you can do this. You are all awesome and keep me strong.
I do wish there was a pause button sometimes just so you can recover and prepare as at this point in our journey it is very draining. But then again I just want to keep my head down fight through the storm and come out the other side as quickly as possible.

Thank god for the good days.
Raitchr
Member

Re: May 2017 chemo starters

Mai7 I had a grade 0.5 buzz cut but a lot fell out so patchy and I do look bald, I do have some new growth, a few longer strands.

 

Re yew tree, I have struggled with hay fever on chemo, have had such a runny nose due to no nose hair. I take Loratadine hay fever tablets as that is supposed to help bone pain.

 

H

Mai7
Member

Re: May 2017 chemo starters

AnnieA, I feel the same, a bit anxious about how my body will react to the new drug, especially since it's derived from the yew tree and I suffer badly with allergies in the tree pollen season! I have my first Taxol on Thursday and have my steroids by the bed ready to take in the morning. *gulp*. Hope all goes well for you tomorrow.

 

Raitchr, thats great news re. Genetic test and possibly offsets some of the current side effects. I wish I just had 2 to go, I have 4 Docetaxols to go - what version of me will crawl out at the end, I don't know, some kind of grub-looking human! πŸ˜‚ Well done for the shopping trip with naked head! Are you bald, crew-cut, mix? I walked around in hospital without headgear as everyone understands the score but my hair and baldness is too uneven to brave it outside of that for now. 

 

Treehouse, traumatic flashback moment, let it go, let it go and relax! πŸƒ

misyangel
Member

Re: May 2017 chemo starters

Heather what wonderful news about BRC gene.  How amazing that you went round Lidle with no headgear I am not brave enough yet to do that but it must feel awesome.

 

AnnieA I am due to start Tax on 8th August along with Hereptin and I must admit I am anxious but Heather has put my mind at rest with what she has been through.  It is like starting again as you don't know what to expect, I think the amount of steriods is worrying me as I really struggle to sleep on the 2 let alone taking 8.  Sending big hugs and will be thinking of you tomorrow

 

Everyone keeps saying you are half way through treatment and how great it is but it certainly doesn't always feel like it when you are going through it and it seems never ending. 

 

treehouse
Member

Re: May 2017 chemo starters

Heather that is fantastic news about brca1 gene. I am so pleased for you and your family. 😊
I am home Mai it's just my brain has started working again and is processing the last few days and that rant popped out. Sorry.
Good luck with treatment this week girls, I have my second heart ❀️ scan tomorrow at stupid o'clock in the morning 😳 Eek .

Arm pain is slowly decreasing thank goddess as that was scary πŸ‘



Raitchr
Member

Re: May 2017 chemo starters

AnnieA I had mine1st T last Thurs, I was way more tired but had much less nausea. Sleeping night before, day of and day after were rubbish as So many steroids but by Sat night I could sleep for 6 hours and nap in the day. Mouth was more sore but over s/effects now. Fingers are troublesome in the mornings but get better, had back ache but paracetamol and hot water bottle keeping it at bay. I didn't have so much constipation but my bottom feels a little red and sore if I strain, I am just using Laxidoo to soften. So far so good for me, and being near the end of chemo makes it more bareable.

 

On another note, I braved the hospital trip and a whirl around Lidl without headgear and I feel awesome!

 

Heather

Raitchr
Member

Re: May 2017 chemo starters

Great news for me, gene test BRCA1 BRCA2 both came back negative, feels like a weight has been lifted, just 2 more Ts to go!