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August 2018 Chemo starters

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Re: August 2018 Chemo starters

Hi Jude

 

I had my first T last week (18/10) and haven’t found it too bad apart from my mouth which is like sandpaper and my taste buds are non existent!! Are you experiencing this too? I’m hoping it starts recovering soon but not sure it will 😏

 

Tarnia

Member

Re: August 2018 Chemo starters

Hi Lovely Ladies,

I had my 3rd weekly T (Paclitaxol) on Friday and feeling okay so far....just 6 more to go!

Jude, Jo, Ktk, Whilst we’re all sharing 😂 I have been suffering with constipation too 😞...not had the other end of spectrum yet.

Also just to let you know I asked nurse about my sore nose and she suggested using cotton bud to apply Vaseline.

Georgie, hope you’re feeling better now.

Take care everyone,

Cat xxx
ktk
Member

Re: August 2018 Chemo starters

Hi Jude, I also had the runs on each T cycle. Constipation for the first week the boom!!! Imodium helped, and Macrogol with the other. T also left me very fatigued. Good for very little, so take it easy and conserve your energy!! Kx
Member

Re: August 2018 Chemo starters

Hi Jude,

 

Sorry to hear about the diarrhoea - I’ve had the other extreme - terrible constipation! How strange is that.

But like you, not really any bone pain this time, just a sore back which inelieve is from the injections. Injections  now finished which is good news.

I also have been sooooo tired. Spent all day Friday in bed and most of Thursday and yesterday just lounging around and then cannot sleep at night !

 

oh well hopefully the next couple of weeks it willl get easier before being knocked back down again......fingers crossed for the last time!

 

Hope everyone is doing ok.

 

jo x

Member

Re: August 2018 Chemo starters

Hi Ladies

Hope you are ok all - Georgie, hope you are home!

Quick update on my latest T cycle - was doing really well up to yesterday when I started with the runs (sorry too much info!) & this continued into this morning, had to resort to Imodium. Just starting to feel ok now but dreadfully tired. Good news is not too much bone pain this time - just a bit of backache.

Take care

Jude x
Member

Re: August 2018 Chemo starters


Good news on your platelet count Cat - I just remembered that one of the nurses had said as you lose your nasal hair as well, it does make your nose dry, sore & runny!
My eyes have started running a little as well in the last day or so, presumably because of the lack of eyelashes! What joy! x
Member

Re: August 2018 Chemo starters

Hi Jude & Sue,
Thanks for the advice. My nose is very dry inside and runny at same time! I was at the hospital today for my blood test and nurse said my platelet counts were fine which is good.

Hi Georgie,
Oh no! So sorry to hear that, you are really going through the mill! Maybe reducing to 50% will do the trick. Either way I hope you get it sorted and you get home very soon.

Take care all 🤗

Cat
Xxx
Member

Re: August 2018 Chemo starters

Hi Cat

I had a very runny nose last cycle & had 4 quite heavy nosebleeds - 3 of them when I was in hospital for the 2 days. No-one seemed that concerned as my platelets were ok - do you know your platelet count?

Georgie - you poor thing - it’s no fun but you are in the best place - presumably you’ll be pumped full if antibiotics. It’s a shame that this latest problem has occurred on the reduced dosage, you might have to drop to 50% next time - on the plus side I suppose you know it is working! Hope you start to feel better soon

Take care all

Jude x
Member

Re: August 2018 Chemo starters

Hi Ladies,


So here I sit again in Acute Assessment Unit of hospital.


Was admitted yesterday after raging sore throat accompanying oral thrush. Temp was up to 38.2 so couldn't keep grinnng and bearing it.... joint pain terrible still.

 

I am wondering what to do about my future chemo. 75% of the dose I needed has still impacted with the sepsis again, and next was supposed to be 50% if this happened.

 

Have a chat with my oncologist coming up next week. She has said that it's a case of weighing up which course of action is less life threatening.

 

So so many thoughts whizzing around.

All the the best to everyone.

 

Georgie xx

Member

Re: August 2018 Chemo starters

Hello Cat

Is your nose dry inside?? I had a problem last winter / early spring with dryness and bleeding and put it down to being indoors lots with heating on. The pharmacist agreed and recommended a water based nasal spray and this worked a treat.

Re hair it does sound as if we will all be different. I've managed to hang onto other hairs (legs, armpits, eyebrows and lashes) though everything has thinned out considerably and it wouldn't surprise me if I lost it all. At the point at which I shaved my head I still had some hairs but not much so I've now got about a centimetre or so of spiky stuff and then what my OH describes as 'patchy bum fluff' over the rest of my head !!!
Member

Re: August 2018 Chemo starters

Hi Jude and Jo, glad to hear treatment going well 👍

Hi Sue, I had 3 x FEC and I’ve had 2 of 7 T but no sign of my hair coming back yet. Another lady on similar regime as me said her hair started to grow back a few weeks in to T so sounds like we are all going to be bit different. Good luck! 😀

My eyelashes and eyebrows are just about hanging in there but lost about 60-70% so far...hoping not to lose any more!

Does anyone else have a sore nose? Mine started to get sore over last few days, had a light nose bleed too. Any suggestions?

Take care all 🤗
Xxx
Member

Re: August 2018 Chemo starters

Hi Jo

My eyelashes have lost the fight! I can’t even wear mascara anymore - sad days!
Eyebrows have thinned a lot but still hanging in there - at the minute!

Jude x
Member

Re: August 2018 Chemo starters

Sue,

 

Im now on T but I think my hair on my head is starting to grow back a bit....but I don’t want to get my hopes up as my eyebrows and lashes seem to be tumbling out!

 

Jo x

Member

Re: August 2018 Chemo starters

Thanks Jo - sounds like you are doing ok on this cycle so far - let’s hope it stays that way!

Sorry Sue - my regime is 3 x EC & 3 x T ( just had 2nd T) but no hair growth fur me ☹️. However a lady on the same treatment & cycle as me said yesterday that her hair was starting to grow although not very evenly. Hope your hair is coming back!

Take care

Jude x
Member

Re: August 2018 Chemo starters

Hello all

Question for you. I'm between my 4th and 5th cycles of EC and over the last week or so I've noticed that the hair on my head appears to be coming back. Has anyone else noticed this? Just wondering if it's a blip or if I can expect it to continue?

Thanks in anticipation

Sue xx
Member

Re: August 2018 Chemo starters

Jude,

 

Thats a good reading for your neuts. I thought mine were good at 2.67 but that has put mine into perspective! My White blood count was ok 4.6 and Hb 116 so doing ok on the full dose.

 

Another round and no sickness ......yeah...as you say just waiting for the bone pain to kick in!

 

im also going to have biosulphates and hormone therapy so will be discussing this with consultant in a couple of weeks. I think it starts after radiotherapy.

 

Good luck with the SE 

 

jo x

 

Member

Re: August 2018 Chemo starters

Hi Ladies

Had herceptin & t chemo (st 75% of original dosage) today & all went well - at the moment feeling fine.
Neuts are up to a massive 6.97 but hb at little low at 9.8 - try to increase with diet
So in theory I should cruise this cycle!

Just injections & bone pain to come 😂

Hope you are ok

Jude x
Member

Re: August 2018 Chemo starters

Thanks Cat - sleep well x
Member

Re: August 2018 Chemo starters

Hi Jude,
My next appt with Oncologist is 31st October so will learn more about the Bisphosphanstes then.
Hope tomorrow goes well!

Take care all

Cat x
Member

Re: August 2018 Chemo starters

Hi Cat

Well done, you are doing really well on this latest treatment with no heavy side effects. Long may it continue!
I’ve had my blood tests today & although my Hb is a little low at 9.8? May account for being a little more breathless than normal? I’m ok for herceptin & chemo (reduced dosage) tomorrow
I don’t think I’ll be starting the bisphosphonates until after the chemo - I’ve an appointment with the oncologist 27/11, so may know more then. When do you start yours?

Hope everyone else is doing ok - love to all

Take care

Jude x
Member

Re: August 2018 Chemo starters

Hi Lovely Ladies,

 

On Friday I started Herceptin and had my second T (Paclitaxol), so far I haven’t suffered with SEs other than a slightly flushed face, some mild aches and pains and general tiredness…...phew!

 

Georgie – glad you started T, hope you stay on track now.

 

Jude – have you started on bisphosphonates yet? How are you getting on?    

 

Hope everyone is doing well and SEs not causing too many issues  - take care!

 

Cat x  

Member

Re: August 2018 Chemo starters

Thanks Jo, 

Got same advice from hotline so spot on!! 

Georgie xx

Member

Re: August 2018 Chemo starters

Hi Georgie,

I had the flushed face on T, it kept flaring up, esp when I went outside.

It wasn’t itchy though just flushed and hot to the touch and looked a bit swollen around the eyes.

 

I rang up the chemo hotline and they told me it was fairly common and to take piriton and went down a couple of days afterwards.

 

Perhaps ring the chemo hotline and get their advice.

Good luck

jo

Member

Re: August 2018 Chemo starters

Hi everyone

I had my first T yesterday.... yay! I had it at last. Only 75%, with only 50% steroids....

They gave me chlorphenamine, also known as piriton, to take up to 3 times a day. I called to ask them which symptoms it helped with... nurse I spoke to didn't know, but will get back to me.

So so far no achey legs or fatigue as it is only day 2, but my eyes are hurting a bit and I have a flushed face which is getting a bit hot and itchy.....

any clues Ladies?
Thank you so much xxx

Georgie xx

Member

Re: August 2018 Chemo starters

Sorry Cat - hope all goes well tomorrow! I’m blaming chemo brain 😂 x
ktk
Member

Re: August 2018 Chemo starters

Happy Birthday Jo. Enjoy the bubbly. You deserve it! 🥂🎂. Kxx
Member

Re: August 2018 Chemo starters

Hi,

 

Thank you for my birthday wishes. Yes I will be celebrating in the New Year once all this treatment is finished.

Luckily my actual birthday falls in my “good” week so a glass of bubbly might be on the cards!

 

jo

Member

Re: August 2018 Chemo starters

Hi Lovely ladies,

Jude, thanks, it’s tomorrow that I have my H and T....but pleased to report that the SEs after my first T last Friday have been minimal 👍. The cumulative effect may change that but for now I will make the most of it!

Jo, Happy Birthday!! 🎂 50 is young! I hit that milestone...decided 50 is the new 40! 😂 I hope you managed to enjoy the day.

Hope everyone doing okay, take care all 🤗
Member

Re: August 2018 Chemo starters

Hi Ladies

Hope you are all hanging in there!

Cat - hope your H & T go ok today - fingers crossed!

Georgie - hope you had your T yesterday & it all went ok & you are not feeling too bad today

Jo - happy 50th birthday! You’ll have to have a big celebration once all this treatment is over - something to look forward to. That’s good that you’ve got the strong pain killers & the mouthwash is a must - I got 3 ulcers & that was whilst I was using it! It does taste quite disgusting though. It’s goid to have your plan for radiotherapy, it feels that you are making progress.

Hope all ok

Jude x
Member

Re: August 2018 Chemo starters

Hi,

I also saw my onc today to discuss round 2 of T. No changes for me with the dosage as my SEs were mainly limited to week 1, therefore he thought I could cope with full dosage again.....he didn’t mention the cumulative effect!

I now have my extra strong painkillers for the backache and bone aches - he thought from the injections.

Extra mouthwash as well....

 

We had a long chat about radiotherapy and I am on a 4 week radio treatment plan - they will give me an extra week as I am considered a “youngster” even though I hit 50at the weekend! I had 7 positive nodes so I will need radio on breast in general and then a targeted one on the tumour site, as well as the node area and shoulder region. 

Hoping my bloods are good so I can get on with round 5 of chemo.....starting to get really fed up with the long slog but need to keep reminding myself it will be worth it in th end!

 

Hope everyone is going ok.

 

jo xx

Member

Re: August 2018 Chemo starters

Hi Jude,

That’s a great result, pleased for you that you are still on track! 👍

Hugs to all 🤗 Take care everyone.

Cat x
Member

Re: August 2018 Chemo starters

Hi Cat

That’s good news if you aren’t suffering too much with ses
I’ve seen the oncologist today & gone through all issues / side effects from last cycle. The decision had been made to keep on track with chemo scheduled dates but reduce the dosage by 20-25% as the effects will be cumulative over the next 2 cycles - hopefully it will all go ok
Re radiotherapy- the consultant had said a 4 week gap from chemo, but as I wanted to finish before Christmas she agreed we could do 3 weeks 😀

Hope everyone else are doing ok

Jude x
Member

Re: August 2018 Chemo starters

Hi Jude,
Thanks, so far side effects haven’t been too bad, mainly general aches and pains, headaches and tiredness.
Good luck with the oncologist tomorrow and fingers crossed you stay on track to finish before Xmas 🤞. Are you having a break between chemo and radiotherapy? I’ve been told I will need a 3-4 week gap.

I hope everyone else doing okay too! 🤗

Take care, Cat x
Member

Re: August 2018 Chemo starters

Hi Ladies

Hope you are all doing ok

Georgie - hope the antibiotics are kicking in & you are starting to feel better, good luck with the T next week, hope it all goes ok
Cat - hope you keeping feeling ok & have minimal side effects - good luck with the herceptin

I’m still on antibiotics until tomorrow & I keep monitoring my temperature. Have to say I’ve been so tired, I’ve had to go back to bed twice today but am still managing a little walk everyday.
I’m back to see the oncologist on Tuesday, not sure whether he will tweak my treatment or keep it the same, I’m just hoping it doesn’t get delayed as I really want to keep on track so I can get my radiotherapy completed by 21st December

Sending hugs & love to all

Jude x
Member

Re: August 2018 Chemo starters

Hi Georgie,

Sorry to hear you had a bad reaction to Herceptin and your chemo is delayed – not what you wanted but better that you are well enough before you carry on with chemo. Take care over the weekend.

 

Hi Jude,

There was a change of plan today and I only had my first T (Paclitaxol). I’m having Herceptin next Friday and after I’ve been monitored for several hours I will have T (Paclitaxol) again on same day. They want to see how I react to T first which seems to makes sense. So far so good, no SEs yet but it’s early days!

 

Hi Jo,

I will buy some anti-histamine tablets tomorrow so I am ready just in case! Sounds like other than that you are doing well on T. Good news.

 

Hi Sue,

Thanks for the update, let us know how you get on at the docs.

 

Wishing everyone a safe and relaxing weekend. Take care!

 

Cat x

Member

Re: August 2018 Chemo starters

Thanks Jude, 

 

how are are you doing now?

 

I am going back next Thursday to try again.  Xx

Member

Re: August 2018 Chemo starters

Hi Georgie

What a bummer, obviously the herceptin hasn’t agreed with you
It’s a shame that you couldn’t have your chemo but far better to be fit before you start it
Did they say when you can have it?

Hope you feel ok over the weekend

Take care

Jude x
Member

Re: August 2018 Chemo starters

Good evening lovely Ladies,

 

Had my first herceptin yesterday.

 

The nurse kept telling me there are no side effects, but they were keeping me for 6 hours 'in case.... '

 

When I got home I felt really sick, had a sandwich, which I forced down, and went to bed. Was very nauseous and had a temp as well, plus diarrhoea so stayed there until this morning.

 

A friend came to me to pick me up for T chemo round 1, and said that I seemed really breathless again.

 

Got to hospital, but they were not happy with how I seemed. Onc decided I might have a chest infection..... so no chemo for me today. Ended up with 2 litres of fluid, and oral antibiotics to go home with. Was given the choice to stay in, which I declined politely! Had to promise to go to A and E if I wasn't feeling any better over the weekend.

 

Love to all

 

Georgie xx

 

Member

Re: August 2018 Chemo starters

Hi Ladies

Thanks for your support - it really helps

Georgie - hope you didn’t have a bad reaction to the herceptin & hope your T goes ok tomorrow. I’m sure they will check your line out again before treatment.
Sorry to hear about your accident, sounds like the insurance people have come up trumps!

Sue - talk through the add-aspirin trial with your oncologist, it might be ok for you - I do find that the chemo gives me heartburn so I don’t want to make things worse when I start the bisphosphonates.
Replens does sound a bit pricey - talk to your doctor who may be able to prescribe something?
My breast care nurse signed me an exemption form (which I need to send off) for free prescriptions - it covers anyone who has or has had cancer - so you should all be exempt from paying regardless of circumstances

Cat - slept better at home than in hospital! Hope your H & T went ok & you didn’t have any bad reaction

Jo - Ive not had any red face issues but I had taken some hay fever tablets for a couple of days before T as I’d been sneezing. I’ve got intermittent tingling in mainly my fingers but I’ve got shellac on my nails so not sure what they are like underneath!

Take care all

Jude x
Member

Re: August 2018 Chemo starters

Hi,

Good luck to all of you starting your new treatments this week and I hope those of you still on the initial treatments are doing ok.

 

Ive just spoken to the chemo unit about my red face- I keep getting red cheeks which flare up for unknown reason and feel really hot, bit like sunburn. My face is also very dry. 

 

Ive had it for a couple of days and at first I thought it might be sun burn from my walk the other day but the redness wasn’t calming down. 

Apparently it is a common SE of the T regime- just been told to take antihistamine tablets to try and reduce the 

redness. They said it is just a mild reaction and only concerned if breathing difficulties or temp.

 

So maybe make sure you have some anti histamine in your ever expanding pill cupboards! But obviously if you do get a red face then check first with the chemo unit just in case it is something else!

 

Apart from that I’m actually feeling ok - I’m in Day 11. A little bit of sorenesss around nails......eek and occasional pins and needles in feet.... but I ll wait till I see onc next weeek to discuss these issues.

 

jo xxx

 

Member

Re: August 2018 Chemo starters

Hello Cat

I was given Sylk on prescription however this didn't come with an applicator so I struggled to get it where I needed it to be. Not sure if Replens is available on prescription though but worth while asking. Another alternative that im aware of is an estrogen gel that you apply - however they may not let you have this depending on the type of cancer they found. I'm TN and was told not during chemo but we can discuss it afterwards.

Good luck

Sue x
Member

Re: August 2018 Chemo starters

Hi Jude,

Fantastic news that you are home - I hope you had great nights sleep in your own bed! Take care.

I start H and T tomorrow but my T is Paclitaxol not Docetaxol hence weekly rather than every 3 weeks.

Interesting to hear that you are going to have bisphosphonates, I am discussing this with my oncologist and just weighing up the benefits versus the SEs....but think I will go ahead.

 

Hi Georgie,

Sorry to hear about your accident. Not what you need! But good that nobody was hurt and you will get it sorted through the insurance.  

Good luck for today – I start Herceptin tomorrow.    

 

Hi Sue,

I’m wondering if you could get treatment for ‘’dry bits’’ on prescription? I’m planning to talk to my Doctor about it to see if I can.

Good to hear that your enzymes down and chemo back on track. I know what you mean about being relieved, I have my end date cemented in my brain so will be gutted if it gets delayed!

 

Take care everyone!

 

Cat x

Member

Re: August 2018 Chemo starters

Hi everyone, 

 

Jude, I am so glad you are home... stay well!! 

 

I start on Herceptin tomorrow, and T (docetaxol) on Friday.....

I wish I didn't even know the H word or the T word.... just thinking, this time last year, most of us didn't.

 

Had a little wobble this morning when I thought I saw some pus around the picc line entry point. The chemo unit had me come in to have it looked at, dressing changed and swabbed the white fluid? They said they didn't think it looked like an infection, so I am going ahead with treatment as planned.

 

Didn't help that on the way in to the hospital, someone backed their taxi into the side of my car. I got all the drivers details, took a photo of his car and mine, and even asked him to sign a statement to say it was his fault....... He was really apologetic, but then tried to say he could ask a mate to fix it if I didn't use my insurance company etc. No way!!!!! Not too much damage, but it will need fixing properly. Insurance company was amazing. They are arranging all the repairs and supplying a courtesy car. I have told them my 'situation', and that I was not sure I would be home when they pick up my car and bring the hire car.


Could have done without this, but in a funny sort of way, this just doesn't matter; with what we are going through with treatment, which is essentially saving our lives, a broken car seems like a minor complication.

 

Goodnight everyone.
Georgie x

Member

Re: August 2018 Chemo starters

Hello Jude

Great news that you are home - you must be so relieved.

I've not definitely decided if I'm going to do the trial - I want more information on taking aspirin over such a long period of time - 5 years seems a long time but like you I want to give something back but obviously want to make sure Im not setting myself up for any other issues.

In other news - I'm reporting back on my dry bits issue. I've been using Replens now for about 2 and a half weeks and there is a massive improvement. I'll be watching what happens with the next round of chemo and if that impacts it but so far Im hopeful. Downside is it's quite expensive - about £12 for 6 treatments which will last about 3 weeks and the reading I've done on it seems to suggest it's a permanent need. I am hoping that as the initial dryness is addressed I can maybe reduce the frequency of each treatment to maintain things but will see. Will report back again in a couple of weeks.

Nite all wishing you all good sleeps free from hot flashes and middle of the night angst

Sue xx
Member

Re: August 2018 Chemo starters

Hi Sue

I got home at tea time today & cant wait to sleep in my own bed!
That’s good news about your liver enzymes, like you say pleased to be having chemo 😂, but I know exactly what you mean
I was asked to go on the add-aspirin trial & I wanted to do it as I wanted to give something back. But when I looked into it as I will be taking bisphosphonates daily for 3 years (starting after chemo) & these can cause oesophagus issues so I decided against it, as I wouldn’t know which drug (or placebo) had caused it

Take care

Jude x

Member

Re: August 2018 Chemo starters

Oooooo - forgot to add. I've also been asked if I'd be interested in joining a trial. They are looking at the effectiveness of asprin in preventing reoccurrence? Has anyone else been asked about this?
Member

Re: August 2018 Chemo starters

Hello Jude

Good to hear to are improving. Fingers crossed that you are allowed home today.

I've been to the hosp myself this morning and my liver enzymes are back down so I can resume chemo treatment and I'll be having my 4th one tomorrow.

Never expected to be relieved about being able to have chemo......

Hope everyone else is keeping as well as can be expected.

Sue xx
Member

Re: August 2018 Chemo starters

Hi Cat
Good luck with the T!
9 weekly sessions of T sounds quite heavy? Do you know what the dosage will be?
My temp has been down for the last 2 obs & as my white blood count is up I’m pretty confident I’ll be going home today

Take care

Jude x
Member

Re: August 2018 Chemo starters

Hi Jude,
Totally get that. I’m due to have 9 weekly sessions of T starting on Friday so will finish Chemo in December and the plan is to have a break over Xmas and start radiotherapy in Jan...would also be gutted if Chemo was delayed.
Hopefully you get some good news today. 🤞🤞🤞
Cat x
Member

Re: August 2018 Chemo starters

Hi Cat

Chemo & herceptin is on 3 weekly cycle so hopefully will be ok for next one
I really don’t want to get delayed with the chemo as radiotherapy is provisionally planned in to finish 21 December - I’ll be gutted if it runs over Christmas & into the new year

Take care all

Jude x