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August 2018 Chemo starters

Member

Re: August 2018 Chemo starters

Hi Lovely Ladies,

 

I hope you're all keeping well.

 

I had my 4th session of Paclitaxol on Friday....just 5 more to go! I had developed a reaction/infection around my PICC line so they made a decision to remove it immediately and put me on antibiotics for 7 days. Not to worry, only a few weeks left!

 

Georgie - so pleased to hear that you are safely home. Sounds like it's the right time to take a break and prepare for radiotherapy. You've been through a lot and are doing great!

 

Multitasker - I'm on weekly Paclitaxol and the plan is to reduce the amount of steroids as the weeks progress but so far I haven't noticed any difference. My sleep is disturbed for a few days and my appetite is also increased.

 

Jude - you must be coming close to the end of your chemo journey? 

 

Take care all

 

Cat x

Member

Re: August 2018 Chemo starters

Hi

I too have trouble sleeping whilst taking steroids 🙄 I find myself getting up in the middle of the night to watch tv or read! I don’t feel tired during the day though I just keep going. Sleep returns to normal a couple or so days after I stop taking them. Not sure you can reduce the amount of steroids you take whilst on Docetaxel as you are more likely to have an allergic reaction to this chemo or so my oncologist said!! 

Im due to have my second dose of Docetaxel on Friday....wish me luck 😫

Hope everyone else is doing well x

Member

Re: August 2018 Chemo starters

Hi Multitasker

I have the same problem with the steroids - I barely sleep for the 3 days that I take them but don’t have much extra energy in the daytime. However once I stop taking them I am then totally exhausted & could sleep at any time of day!
Sorry I can’t offer any advice about reducing them other than to discuss with your breast care nurse initially, who may be able to advise/liaise with your oncologist
Hope you can get a resolution

Jude x
Member

Re: August 2018 Chemo starters

Hi folks

 

Havent been on for a while. Just trying to keep my s**t together, this treatment is so brutal physically and emotionally.


I had my first dose of Docetaxel 8 days ago. Previously 4 cycles of EC which I hated due to intense nausea for 24/36 hours and feeling broken for the week after. Amazing how different the chemo drugs are.

 

Thanks for the great tips for SEs, immediately got bad oral thrush and using nystatin and your pearls of wisdom.

My question regards the steroids given before and during treatment. I find they really disturb my sleep at a time when I crave and need it so desperately. I take the second does around lunchtime as recommended but I am still so wired I only sleep for a few hours. I do not get any extra energy or appetite other people mention. The effects seem to take days to leave my system or maybe my body clock gets into a bad pattern.

Has anyone successfully reduced the level of steroids they take and did this help lessen imsomnia?

Member

Re: August 2018 Chemo starters

Hi Georgie
Pleased you finally got home!
You’ve had such a bad reaction to the chemo each time, which to my mind means that the chemo that you’ve had has been working & doing its job. So while you may not have had the agreed quota it’s not worth putting your body through anymore.
Like you say the radiotherapy is now important just to catch any stray cells in the immediate area
Time for you to rest up & build your strength up again!
Take care

Jude x
Member

Re: August 2018 Chemo starters

Sorry my post appeared twice!  

I copied and pasted it but it didn't paste, or so I thought, last night. 

 

G G xx

Member

Re: August 2018 Chemo starters

Good evening everyone,

 

Im sorry that it has taken me a day to get back to you all and report on my meeting with my oncologist.

I am just getting my head around it all, and have been catching up with rest today at home.

 

When i I left the ward yesterday morning, I was surprised when the nurses said that they were not 100% sure that I was being discharged, but all seemed ok so I did go home after my onc appointment with my lovely daughter. We ordered pizza as requested, and enjoyed our afternoon.

 

As soon as we entered the consultation room, my oncologist waited for us to settle, and then said that she had made the decision to stop my chemotherapy altogether. I was shocked, and then actually very relieved, as I was thinking that I would have to negotiate my options going forward. She actually said that she felt that chemotherapy was actually more life threatening to me than the cancer, given my body's reaction. I have had 3 bouts of sepsis after 3 FEC and 1 x 75% T. I do not know whether my views will change further down the line, depending on what could happen in terms of recurrence or secondary ca.


I will still have herceptin for a year, bone protection for 3 years and 3 weeks of radiotherapy.

I had previously been quite worried about radiotherapy, but after the consultant explained more about the accuracy of the treatment, and measures taken to avoid heart damage (I had left sided BC), I am a bit more reassured. With an incomplete chemo course, I am also more of the opinion that I need to have RT. I have no hormone involvement either, so that means there is not anything like tamoxifen that they can throw at the cancer.

 

I would be be interested to hear what other ladies think about this; to be honest, I feel that I have got away lightly compared to many of you. My surgery has been completed, and I do not have to consider reconstruction or anything.

 

It is so good to be home now, and I thank you all very much for your support and humour whilst I was in hospital.

Bye for now

Georgie Gee xxx

 

Member

Re: August 2018 Chemo starters

Good evening everyone,

Im sorry that it has taken me a day to get back to you all and report on my meeting with my oncologist.

 

I am just getting my head around it all, and have been catching up with rest today at home.

 

When i I left the ward yesterday morning, I was surprised when the nurses said that they were not 100% sure that I was being discharged, but all seemed ok so I did go home after my onc appointment with my lovely daughter. We ordered pizza as requested, and enjoyed our afternoon.

 

As soon as we entered the consultation room, my oncologist waited for us to settle, and then said that she had made the decision to stop my chemotherapy altogether. I was shocked, and then actually very relieved, as I was thinking that I would have to negotiate my options going forward. She actually said that she felt that chemotherapy was actually more life threatening to me than the cancer, given my body's reaction. I have had 3 bouts of sepsis after 3 FEC and 1 x 75% T. I do not know whether my views will change further down the line, depending on what could happen in terms of recurrence or secondary ca.


I will still have herceptin for a year, bone protection for 3 years and 3 weeks of radiotherapy.

I had previously been quite worried about radiotherapy, but after the consultant explained more about the accuracy of the treatment, and measures taken to avoid heart damage (I had left sided BC), I am a bit more reassured. With an incomplete chemo course, I am also more of the opinion that I need to have RT. I have no hormone involvement either, so that means there is not anything like tamoxifen that they can throw at the cancer.

 

I would be be interested to hear what other ladies think about this; to be honest, I feel that I have got away lightly compared to many of you. My surgery has been completed, and I do not have to consider reconstruction or anything.

 

It is so good to be home now, and I thank you all very much for your support and humour whilst I was in hospital.

Bye for now

Georgie Gee xxx

 

Member

Re: August 2018 Chemo starters

Hi Georgie

Hope you get home tomorrow & enjoy celebrating your daughters birthday + good luck for your meeting with the oncologist!
There’s no place like home!

Take care all

Jude x
Member

Re: August 2018 Chemo starters

Hi Georgie,
Naughtyphils is right! Glad to hear you’re starting to get better and will be going home tomorrow to enjoy your daughters birthday......bet you can’t wait after such a long stint in hospital! Good luck with the Oncologist, hope you get your treatment back on track.
Take care all
Cat 😘
Member

Re: August 2018 Chemo starters

Hi Ladies, 

 

I have been here in hospital since last Tuesday evening.  I've been on the June thread a little, but not updated on this one.  

 

The neutrophils count this time started very very low but has come up since, however they have kept me in for a full week of IV antibiotics to make sure the sepsis is gone.  I've decided to call neutrophils "naughtyphils". We are clearly not playing nicely together with the chemo.  I have been told I can go home after Wednesday's antibiotics. 

 

I had a meeting with my oncologist planned, just so happens to be Wednesday.  My daughter has her birthday the same day, and we had planned a nice day together.  Now we will be spending the morning here and are aiming for lunch at home. How lovely that will be🏠! 

 

Its good to to be able to come on here and June thread too, where everyone's support has been great.

 

Thank you ! 

 

Georgie Gee 😘

Member

Re: August 2018 Chemo starters

Hi Lovely Ladies,

I hope you’re all keeping well!

Cdc - welcome to the August forum! I’m also on weekly Paclitaxol, I had my 3rd of 9 sessions on Friday. So far feeling okay. Main SEs for me are; flushed face for 1 day, sore nose/mild bleeding, mouth ulcers, heartburn, constipation, a few aches and pains and some tiredness, but nothing too bad. Not had numb toes as yet.

Jude, Jo, Tarnia & Ktk - hope your SEs are being kind and not getting you down. Jo I haven’t experienced a dry cough.

Take care everyone!

Cat
🤗😘🤗
Member

Re: August 2018 Chemo starters

Hi all,

 

Hope everyone is doing ok.

 

A quick question- has anyone experience an annoying dry cough, esp at night and in the morning?

It started a couple of days after T and disappears during the day.

 

Temp is ok.

 

Thanks

jo

 

 

Member

Re: August 2018 Chemo starters

Hi Cdc,

I had my second T cycle last Monday and have been extremely tired. I also had quite bad facial flushing on the first round, which lasted several days and caused some swelling around eyes. I was advised to take Piriton as it was a “common reaction” to T.

 

Still on the full dosage as most of my SEs only lasted the first week - onc felt I could take the full dose again!

Final round(hopefully) on 12 Nov.

 

jo x

 

Member

Re: August 2018 Chemo starters

Thanks for your reply Jude, You’ve reminded me that my oncologist warned me that even on weekly Paclitaxel I would still get side effects and they would be accumulative, I think because I had a week’s break I temporarily felt better and forgot how lousy the chemo can make me feel! Oh well roll on December. I had an extremely sore mouth on AC and was recommended something called Daktarin gel. (Not the stuff you put on your feet I hasten to add!). It worked for me but I think the salt water mouth washes were the most effective in reducing sore mouth issues. I would gargle with some salt in warm water after each meal. I’m glad you’ve found the Diflam works for you,
Do hope that the runs clear up soon! I was shocked when I had them today as I usually have the other! Hoping it was a one off.

Hope you can have a restful evening.

Hugs xx
Member

Re: August 2018 Chemo starters

Hi Cdc
Sorry to hear of your treatment delays, it’s a pain when you have a finish line to aim for at the start.
I’ve had some tingling in my fingers but not too problematic & my toes have been ok. I’ve only had 75% of T this cycle as I had a bad reaction last time.
I had a little bit of facial flushing for the first 24 hours but being ok since
Sounds like you’ve had a tough time already re ops, hope your mx goes well in the New Year
Take care

Jude x
Member

Re: August 2018 Chemo starters

Hi Tarnia
I had T last Tuesday & my taste buds have gone today! The inside of my mouth is also a tad swollen so I’m expecting some ulcers where I keep catching areas. I have got some good mouthwash - diflam - so will start using that today
Take care
Jude x
Member

Re: August 2018 Chemo starters

Hi Jo & K

I have to say the tiredness is quite overwhelming - my oncologist says it’s cumulative so the last cycle could be heavy! I’m still suffering with the runs but hopefully it will start to ease soon

Take care all

Jude x
Member

Re: August 2018 Chemo starters

Hi everyone I’m usually on the June thread but I was originally on 4AC then 4T so finishing later than some of those having 3FEC-3T. I’ve also had some delays which means I have a similar amount of treatments left as some on this thread I believe.. After my first docetaxol I had hand/foot syndrome and had to wait for it to clear up before being put on to weekly Paclitaxel instead. After my 2nd Paclitaxel I had some peripheral neuropathy in my toes and the balls of my feet so had another weeks delay. Thankfully the feeling returned somewhat and I was allowed to have my 3rd chemo at an 80% dose on Friday. Has anyone else had issues with numb toes? My fingers are feeling slightly tingly today too. I’ve now been given a chemo end date mid-December as long as I have no more problems with skin or nerve damage. It’s all feeling like a bit of a slog. I’ve been told I am very sensitive to the ‘taxane’ part of treatment and may have to come off it altogether. I hope you won’t mind me joining you on here from time to time to share experiences/support. . I have also had facial flushing but this goes down around 24 hours after each dose, I am feeling very tired today so think the fatigue maybe setting in, I thought having only 80% of the dose might minimise it but I’ve been forced to retire to my bed today. I often had constipation on the AC and T drugs but have had diarrhoea today which was a total surprise. Just wondering if it’s the Paclitaxel? I’ve been very lucky in other respects as my bloods have been ‘within an acceptable range’ each cycle so far so hope that will continue. ’
I’m Er+ 8/8 but HER- I have bilateral BC and had a therapeutic mammoplasty in May then a further re-excision on the right which unfortunately found more cancer cells. My chemo is neo-adjuvant and I will have a mastectomy in the New Year.

I hope everyone is faring ok. Georgie Gee Sorry you’re back in hospital. I do so hope your medical team have found something to help your swallowing problems and you are feeling better.

Take care everyone x






Member

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