September 2019 Chemo Starters

[Naomi40]

Bethybluesky 

I’m so sorry that it’s been a rough time for you. Docetaxel is a very harsh chemotherapy drug and my oncologist decided it would be too much for my body to handle as I didn’t have good experiences with fec chemotherapy and now I’m having paclitaxel weekly. Maybe talk to your oncologist and see what they can recommend regarding treatment.  Sending you hugs 

[mini mad]

Hi Naomi40,

try not to worry that you still have tenderness around the entry point,  i was exactly the same,  it did settle down.

also seeing a little blood on dressings after 3 days , for me was ok.  As long as its dried blood and not fresh blood which i hope yours is.

re the strange taste in your mouth,  think i read somewhere on here to suck wine gums ??   Perhaps somebody else could answer this for you...  i didnt have that side effect.

good luck with your Paclitaxel,  i had 11 so if you wanna ask anything go ahead.

also i was told i would def lose all my hair around the 2/3 session,  it was nearer the 5/6 and i didnt lose it all.   Had bald patches but kept hair inbetween,  just buzzed it.

mini mad xx 💖💖

[Bethybluesky]

Hi Naomi,

I think I'm going through early menopause too because I had 3 periods in the first 7 weeks of chemo and am now getting hot flushes and crying regularly! I think a picline is probably a good move because my veins are pretty mucked up from 4 rounds of chemo. My taste/ mouth was really sore and ruined with FEC and has continued with docetaxel. Hot chocolate is okay but coffee and tea are hideous. I have also just come out of hospital after a pretty severe case of neutropenic sepsis and am pretty sure I'm going to refuse my last 2 rounds of chemo. Has anyone else on here stopped? I am stage 2b, oncotype dx 22 and had 80% of my brest breast removed containing 3 tumours and 1 positive node.

[Naomi40]

Evening everyone 

I hope everyone is doing okay xx 

I had my picc line in on Tuesday and my arm still feels sore on the access point. My dressings were changed after 24 hours but I’ve noticed on the entry part to my arm it looks like it’s bled a little bit. Maybe it’s normal and I don’t need to worry. I am a natural born worrier but I try not to be. What are other people’s experiences with the picc line post 3 days. I’m having dreadful hot flushes because the treatment is making me go through menopause which isn’t too bad to some extent but I don’t like being warm it makes me dreadfully grumpy and because the heating needs to be on for my children my bedroom has windows open and the fan on full speed. Is anyone else having similar problems and how do you cope. I have never felt as moody and snappy as I have been recently, I try not to snap especially at my children and sometimes I’m putting on a smile and trying to be cheerful so I don’t upset them but sometimes I think if I’m on my own I can’t upset anyone. And eating is a nightmare as I constantly have a weird taste in my mouth since starting paclitaxel ( if that’s how it’s spelt) on Wednesday and nothing seems to help with that. 

[yorkshire_defector]

Hi Kattz

Hope your MRI results also show that your boobs are hyper-intelligent, as mine did!

I had 4 ECs with minimal side effects, no sickness/nausea though one hospital stay but felt fine after day 1 and it was like a spa, unfortunately no lovely facials or massages (I did complain). The shrinkage was after 2 cycles and the less dense result after 3 so guess my lumpage responded better I guess - just shows how much we're all different and react differently to the drain cleaner eh?

I hope that the new (and what a mouthful) of drugs doesn't spoil your birthday, I think gin is very similar to chemo drugs so do have as much as you can.  I 'celebrated' by 50th with a chemo session in August so am having a queen like second birthday when all this shenanigans is over & done with.

Am , again, lucky that still have most of taste intact but unlike you can't face the thought of alcohol...most annoying but the liver is loving it!

Enjoy the birthday and glad its the final week so hope things improve after that.

Sam X

[Naomi40]

Hi everyone,

Just a question, can I take nurofen with a picc line.

Hope everyone is feeling okay today 

[katttz]

Morning! 

hope you’re feeling ok this morning Naomi 🙂

Good news on your MRI Sam! Like you I had shrinkage but stayed dense 🤪. I’ve got my 2nd MRI on Monday so 🤞.

Did you have 3 EC’s? I only had 2 and due to ‘minimal response’ I was moved onto pertuzemab, tratuzemab and docetaxil . They have said they are expecting a better response this time 😬. I bloody hope so , I have felt ropier this round. still managing day to day stuff on the whole(just cleaned bathroom 🙌) but just not felt good. Coming up to final week and birthday weekend so hoping I’ll feel like a few gins and finally be able to taste what I’m eating.

i might as well save money and rather than eat food eat the packaging it comes in... it all tastes like cardboard .

Onwards and upwards it’s nearly the weekend 😊

[yorkshire_defector]

Naomi,
Glad it appears to have gone well, easy to say but I generally find things aren't as bad as I expect. My port was also uncomfortable for about 2 wks post insertion but is now like part of me...all be it a strange lump above the good boob.

All,
All going well here, results of 2nd MRI showed that am less dense...soon to be hyper intelligent me thinks! Given shrinkage from MRI no. 1 and now reduced density they may not be able to find pesky lumpy/nodules area again so more body implants required (anyone know any good circus's as all I need is a split tongue and am there!).

New chemo (accelerated paclitaxel) tomorrow for a mere 4 hours, I know some are longer and I feel for you but 4 hrs is a long time even for gobby me. Its the nurses & my chemo companions I feel for. Am taking playing cards but given have invested in cold socks & gloves (trying to avoid peripheral neuropathy) not sure I'll be able to hold cards (plus cheating will be more challenging!) ...will however enjoy again looking like a twerp in the chemo unit (was a Russian cosmonaut in cold cap previously...an interesting look indeed).

Am told paclitaxel will be soooo much better than EC and as was fine on that (sorry all who aren't!) hopefully will carry on being Wonder Woman (with a few rough days!). Fingers (that aren't tingly and still have nails intact) crossed eh?

Hope everyone else is as daftly good.

Sam X

[mini mad]

Yes,  what you're feeling is absolutely normal 👍

i had my picc in for 12 weeks.  X

[Naomi40]

Hi mini mad,

I had to wait 2 hours before my procedure and it took 35 minutes to do it. I was so emotional and really didn’t think I would be okay with having it done.

 I have slight discomfort in the site where it is and a little bit of discomfort in my chest but I’m guessing that’s normal.

[mini mad]

Hang in there Naomi40 xx thinking of you and remembering how terrified i was.

it wasnt Anywhere near as bad as i imagined it would be..   good luck..x

[Naomi40]

Hi mini mad 

I have to wait another 45 minutes before they do my picc line which unfortunately isn’t helping my anxiety at the moment 

[mini mad]

Hey Naomi40,

i had no trouble at all with my picc line, just had it flushed through once a week n 

the dressing changed before my treatment.  No pain just the odd twingle for few days after but nothing really since it was put in.

maybe ur back home by now.. let me know how you get/got on.

mini mad xx 💖💖

[Naomi40]

Hi mini mad 

Thank you for replying. I’m so scared about tomorrow and I’m trying not to think about it but I just feel so nervous. 
Have you had any problems with your picc line and how long have you had yours for. 

[mini mad]

Hi Naomi40,

i had a PICC line when i started my chemo,  veins are rubbish on my hands.

never regretted it,  took about 35 mins to put in.   Used for chemo,  bloods n any meds, no pain from cannula's.....

you can buy PICC line covers which look good and when you shower you need to keep the picc dry....good old cling film.... 

good luck for tomorrow n try not to worry about it,  Let me know how it goes.

mini mad xx 💖💖

[katttz]

Hello from a very sunny Leeds ☀️☀️☀️

Glad to hear you are through the worst this cycle Sam. Bike ride sounds awesome, I love a bit of mud and manure is good for roses? Surely it’s good for us too 😉.

I’m just going through the mill😩 and feeling 😖😴🤧😕.  Just had to do an emergency dash to the loo in Sainsbury’s.... thank the lord there was no queue 😳💩

The kids are just not getting it ( they are only 10) however I think they are definitely of an age were empathy should have kicked in. Well, I think it might have after my explosion on Saturday! They were being little s*!**s and I lost the plot, with my husband too. Expletives galore 😬🤬!

I have given no apologies for my outburst and nor do I intend too. 
It’s also my big fat 50 on Saturday ☹️. I’m not really bothered about being 50 I’m more bothered that all my plans have now changed. Weekend to Bruges cancelled, marathon I was doing with friends in Spain cancelled . 
I haven’t wanted any fuss but different groups of friends are arranging meet ups for lunches, afternoon tea, theatre visit so it’s not all doom and gloom. 

I think if anything, this **bleep**ty cancer has highlighted how things at home aren’t that rosy 😔.

sorry for the self indulgent post . 
On a  positive note I got a critical illness payout which I didn’t even think I was entitled too! 

kate xx😘

[Naomi40]

Hi everyone.

Due for picc line insertion tomorrow and feeling slightly apprehensive. Does anyone have a picc line and are there any do’s or don’t s with one.

[yorkshire_defector]

Hi All
Sorry there appears to have been some downs on here but am back fighting fit to provide the ups - the rough week in last post was thankfully just temporary and was in lovely Northumberland last week with an extremely muddy bike ride yesterday (think I consumed quite a lot of not only mud but also horse s$%t too - am sure that will help my treatment plan).

Am all done with the naughty drain cleaner, EC, and on Thurs on the cillit bang, paclitaxel, which I believe is a breeze compared to EC so hopefully should sail through (we will see eh?).
I've started Christmas shopping too and do hope that all are starting to feel a little Christmassy given the weather is now suitably cooler - which is a relief for a summer hating/tropical sweating northerner, bring on the frost I say! That said I do need to sort out my bedding plants so think will be doing very cold gardening this weekend, the neighbours will think the chemo has removed not only brain but all common-sense all together as they did last time I was doing it in the rain.

Hope all have had a good weekend with no incidents, some good food & rest and minimal/no side effects.

Sam X

[berylperil]

Thanks ladies for your responses. Much appreciated. X

[katttz]

Hi Berylperil,

pleased you’re feeling better generally. I hate the disappearance of taste and that awful mouth feeling. It’s just a waste of food because it has no taste.  
No suggestions I’m afraid, I’ve had no soreness in my last few rounds thankfully. I do tend to eat boiled sweets to take away the foul, furry taste in my mouth. 
Do you find it clears up into week 3? 

xxx

[katttz]

Hi Naomi, sounds like you need to talk it through with your oncologist some more. Keep us updated xx

[pinkflamingo]

Not this brand but came in a dropper bottle like this 💜

[berylperil]

Hi

Thanks pinkflamingo will start googling to source the syrup. 

X

[pinkflamingo]

Hi berylperil,

sorry to hear you’re having problems with taste - I was given some marshmallow syrup which a friend got from a local apothecary/ homeopathy/ health food store. It has been brilliant- just have a few drops on my tongue and it gets rid/ masks the hideous chemo taste long enough to be able to have a cup of tea or coffee or squash without it tasting horrid. I know I don’t drink enough anyway so this has been a godsend. 
sending hugs 

x

[berylperil]

Hello ladies, 

Sorry haven't posted for over a week. Am ok and feeling better. Am pleased to say that I have not had neutropenic fever this cycle. 

Along with my energy levels in the first 10 days particularly, my mouth has been worse this cycle. I struggled to know what to drink. I now cannot even smell ginger without feeling queasy. Tea and coffee have been foul, but this has improved. At the worst bit I  have just drunk fizzy  cold water. Has anyone found any good suggestions for managing this? My tongue was sore and very dry as was the back of my throat (like a couple of peas were stuck I couldn't shift). I have now got some biotene toothpaste (for dry mouth) and some saliva replacement spray which has helped.

Really feeling that this is marathon and not a sprint, the finish line is not yet in sight, but  this second half is taking its toll.  Sending hugs to all,  we will get there. 

[Naomi40]

I’m really scared because of how the picc line is inserted and the vein that it goes into and I’m worried about the risks 

[katttz]

---

@Naomi40 wrote:

Hi Everyone, 

I hope everyone is doing okay?

 I unfortunately have hit a bit of a low. I feel like I’m just doing what needs to be done without any real feelings. 

I have finished my 3 cycles of fec and have a scan on Thursday to see if my tumours have responded. I also have to see a nurse for picc line insertion even though I have said no to having that as that’s not what I discussed with my oncologist. 

I didn’t do well with the last 2 cycles of fec and I still have pain in my arm from the last 2 cycles and I felt more unwell with the 3rd cycle. 

My oncologist now wants me to have weekly chemotherapy instead of Docetaxel because of how my body reacted with fec. I’m so tired of being stuck full of needles and I’m so fed up of it all right now. 

I’m trying to be brave and strong but sometimes I’m just so fed up with it all.

---

Hi Naomi,

fingers crossed with your scan on Thursday 🤞

Why do you not want a picc line? It might be more straightforward if you have to have weekly chemo, it could take away the stress of all the injections.

you are really going through the mill with this treatment Naomi and it’s such a shame you have to try and feel brave when you shouldn’t have to if you’re feeling totally crap! 
At the start of this journey the Macmillan nurse spoke to me about how cancer treatment can affect people differently and our moods too. Have you spoken to your nurse/ doctor about how low this is making you feel? They should be able to give you something to help or contact Macmillan about a counselling session. It sounds like you’re not really getting the time with the medical staff for them to get how you feel. Xxxx

[Naomi40]

Hi Everyone, 

I hope everyone is doing okay?

 I unfortunately have hit a bit of a low. I feel like I’m just doing what needs to be done without any real feelings. 

I have finished my 3 cycles of fec and have a scan on Thursday to see if my tumours have responded. I also have to see a nurse for picc line insertion even though I have said no to having that as that’s not what I discussed with my oncologist. 

I didn’t do well with the last 2 cycles of fec and I still have pain in my arm from the last 2 cycles and I felt more unwell with the 3rd cycle. 

My oncologist now wants me to have weekly chemotherapy instead of Docetaxel because of how my body reacted with fec. I’m so tired of being stuck full of needles and I’m so fed up of it all right now. 

I’m trying to be brave and strong but sometimes I’m just so fed up with it all.

[katttz]

---

@berylperil wrote:

Hi September gang, 

Feels like we're definitely in the trenches now. I was very pleased to get round 4 in last Thursday, but after the high has come the low.  Sunday passed in a haze of exhaustion. It was enough to have made it from bed to sofa and back again. Making myself eat and drink, but don't really want to, but know I have to. 

Today I feel a tad better, I think this comes from accepting that I will need to go through this  phase and there will  better days ahead. I cried alot in cycle 3, I now know how gentle I need to be with myself and others.  There is a pace and rhythm to the process my body needs to go through and I have been fighting it. This has come in the form of needing to achieve something everyday, and then feeling that I am useless (even saying I am pointless), if I can't do it. I am being a bit rubbish at being wife/mother/friend/daughter/colleague, I have sort of lost my identity in these roles, I am for this short while reduced from who I was. I have even said I am failing at this chemo lark as others seem to carry on and sail through, so why can't I? But for now this is me,  I am  not achieving  what I thought was important, my expectations on myself have realigned.  I am not keeping my chin up or carrying on to make sure life seems normal, because its absolutely not. Today I am still exhausted but I got up and had breakfast and  cleaned my teeth, and then crawled back under my duvet.  I have  got my lovely dog for company,  and I have pulled favours for the school run. I don't need to achieve anything more than just be, and tomorrow is another day. X

---

How are you feeling? Hope today is a good day xxxx

[katttz]

Hi everyone,

how are you all? Just catching up and sensing we are all in the thick of it now. I’m currently having round 4 as I write. Last patient here!

i had two rounds of EC and mri showed a minimal response to the tumour so they cancelled my 3rd EC and I’m now having pertuzumab, trastuzumab and docetaxel.

Last 3 weeks have gone quite fast tbh. I did have episodes of tiredness and achey bones and that bloody awful taste in my mouth 😭 

I enjoyed a few gins this last weekend though as I felt ‘normal’!

when I met with my chemo nurse on Friday she told me to expect to feel emotional and tearful at times. It seems to happen more so on rounds 4 and 5. 
so if you haven’t been told this take care and come on here for some hugs xxx 

[yorkshire_defector]

BerylP

I too am feeling it this time, had a nap at 5pm Sunday evening and didn't leave bed until 7 this morning.  Couldn't face the bike ride that I really wanted to go on and knew I shouldn't given am feeling quite meh.

Today not a good brain cell day and am now tucked up in Jim jams in front of TV. Hopefully next week will return to being the good week.

Sam X

[pinkflamingo]

Thank you LucyLump 😊 

My breast surgeon is really informative and puts me totally at ease but I haven’t seen him since my sentinel node biopsy in August. 
My oncologist is not as good a communicator; he will tell me if I ask but I don’t always know what to ask because I don’t know what to expect, if that makes sense? I don’t know what I don’t know. 
Hearing that there are others who have trodden a similar path is comforting .

[LucyLump]

Hi lovely ladies. I am just visiting from the July group. Pink Flamingo I also had a scan after the 3 FEC chemo and my lump had not shrunk at all. In fact it had very slightly grown bigger which like you I was not happy about. The breast surgeon had warned me before I started chemo not to be surprised if this happened and that reduction in size was more likely to be seen in the second half and he was right. After I started the docetaxel, herceptin and perjeta the lump shrunk almost immediately and it has finished off less than half it's previous size. I am now happy with that. The other thing worth mentioning is that in my case I found the docetaxel easier than the FEC. The worst thing about it for me was the change in taste buds but I found that easier than the feeling sick on FEC. Everyone is different but just wanted to say that for some people docetaxel is not necessarily worse. Good luck all of you with the rest of your treatments. You will finish them soon. Xx

[berylperil]

Hi September gang, 

Feels like we're definitely in the trenches now. I was very pleased to get round 4 in last Thursday, but after the high has come the low.  Sunday passed in a haze of exhaustion. It was enough to have made it from bed to sofa and back again. Making myself eat and drink, but don't really want to, but know I have to. 

Today I feel a tad better, I think this comes from accepting that I will need to go through this  phase and there will  better days ahead. I cried alot in cycle 3, I now know how gentle I need to be with myself and others.  There is a pace and rhythm to the process my body needs to go through and I have been fighting it. This has come in the form of needing to achieve something everyday, and then feeling that I am useless (even saying I am pointless), if I can't do it. I am being a bit rubbish at being wife/mother/friend/daughter/colleague, I have sort of lost my identity in these roles, I am for this short while reduced from who I was. I have even said I am failing at this chemo lark as others seem to carry on and sail through, so why can't I? But for now this is me,  I am  not achieving  what I thought was important, my expectations on myself have realigned.  I am not keeping my chin up or carrying on to make sure life seems normal, because its absolutely not. Today I am still exhausted but I got up and had breakfast and  cleaned my teeth, and then crawled back under my duvet.  I have  got my lovely dog for company,  and I have pulled favours for the school run. I don't need to achieve anything more than just be, and tomorrow is another day. X

[Naomi40]

Bless you it’s awful. I’m really struggling this time. Joint pain, breathlessness, heartburn, bladder irritation and I’m dreading the Docetaxel 

[pinkflamingo]

Agree re the exhaustion Naomi40 - I have had very little in terms of side effects since the first cycle but the fatigue and exhaustion is really difficult- I seem to have no stamina whatsoever. Makes me feel utterly useless 😔

[Naomi40]

Hi pink flamingo 

I can kind of relate, had 3 lots of fec and just waiting for a scan.

 I had breast markers put into my tumours and I was told they had shrunk a bit but this was nearly 2 months ago and now I also experience pain in that area and my hair is starting to grow back and it makes me doubt how effective it really is. 

I hope that you are doing okay and it’s just that you need to have the last lot of chemotherapy to make the difference.

Sending hugs to you as I can just imagine how frustrating it all can seem 

[pinkflamingo]

Hi all,

Not long finished my 3rd cycle of neo-adjuvant FEC and had my scan to see progress. Disappointed to find it hasn’t shrunk at all. After first cycle, I was aware of some soreness around lump but this soon stopped. Oncologist thought at the time that this was positive indicator that chemo was working. Now I’m not so sure - added to which my hair has started growing back. On the one hand I’m quite delighted on the other it’s making me think that the FEC has done nothing since the initial cycle. 
anyone experienced anything similar?

next week, I have first cycle of docetaxol, herceptin and perjeta

currently quite despondent 😞

Pink Flamingo

[Naomi40]

My 3rd cycle of fec and I feel more worn out then the last time. I honestly don’t know how my body is going to cope with Docetaxel next. I hate feeling this exhausted all the time. Being a single mum I worry as I need to do school runs and try and keep things as normal as possible and I really don’t know how I’m supposed to do it. I have a partner but we live in different areas and only see each other on weekends. I just want to stay in bed all the time. Went out for an hour today and I’m now exhausted 

[AnnaGabanna]

Hi All

Week 7 of Paclitaxel and Cycle 3 of Carboplatin last Friday. Side effects that I have had are minimal considering joint pains day3-5 and this week increase in fatigue and nausea. I am still able to go to my yoga classes, housework and take my boy to cinemas  but today I feel like meeeehhh so just on the settee feeling sorry for myself l. So sorry to hear that some of you had a few hospital stints xx

[yorkshire_defector]

Help if I state who am writing to ...

Pardeep (PB)

And to carry on...I've just had my 4th EC and had very few side effects, yep lost some of hair and got so annoyed with finding it all over and being unable to wash/style without losing more had it all shaved off, constipation (sorted via dulcoease) and feel a bit rough the following week (but doesn't stop me cycling or taking it easy at the gym) but no nausea or sickness at all - hope you're equally lucky as me & as you were on paclitaxel.

Sam X

[yorkshire_defector]

Good to see you back & hear you're doing well on the paclitaxel, will be joining you in 3 weeks...can't wait!

Sam X

[mini mad]

Didnt stop me from doing anything apart from swimming which i dont do anyway.

i found some pretty picc line covers on ebay which i wore all the time. The tubes all fit nicely inside and are comfortable 👍

you'll probably be given one to use when showering.  I just kept my arm up above my head but you soon get used to it.

i had all my chemo and pre meds and saline flushes thro my picc, it was so easy and ' no pain ' ! You have the dressing changed and the lines flushed every week. Xx

[Naomi40]

mini mad 

I guess I’m worried about the risks and the do’s and dont’s . I have a 9 yr old and 13 yr old that I still need to take care of and being a single parent I’m worried that it will restrict me doing certain things 

[mini mad]

Hi Naomi40,

i had a PICC line , they dont do Portacath's at my hospital,  and i didnt have any problems with it.   Putting it in was ok,  i found the local injections more uncomfortable than the procedure itself.

anything you want to ask go right ahead.  I was having my treatment every week and my veins arent good.

mini mad xx 💖💖

[Pb]

A little update from me..

I had Pacitaxel number 9 yesterday and have a further 3 treatments before moving over to the dreaded EC. I have tolerated the pacitaxel really well and had minimum side effects so for those of you moving to this soon a bit of hope... The main side effects I have had are diarrhoea which is manageable and some tiredness. I have been able to do the school run every day except chemo day so a relative state of normality for my children. 

Sorry to hear some of you have been on hospital.. 

Take care everyone.

Pardeep.x

[Pb]

Hi Everyone. 

Sorry bit been on here for a while aa managed to block my account..

Naomi I too had a port fitted and it so much more convenient as I am currently on weekly chemo. It makes life easier... 

[yorkshire_defector]

Naomi

Did you ask why you couldn't have a port?  I know there maybe a waiting list for a port, and depending on where you are in your cehmo treatment time may be of the essence but , if time permits, I would, personally challenge this decision.  PICC is still far better than cannula but if you would prefer a port then please do shout!

Chemo is not the time to be all British about this cr4ppy situation, which I discovered early doors (when was admitted to hospital due to thinking I was not feeling "bad" enough/as other people I read about).

Good luck with whatever you get.

Sam X

[Naomi40]

Hello, 

I’ve just been told I will be having a picc line and I’m really worried about it 

[yorkshire_defector]

Naomi

Yes but whilst mine was done under local anaesthetic they gave me something else (not general anaesthetic though) that knocked me out for quite a while (probably just to shut me up) but did come round towards end of operation but couldn't feel anything at all.

Sam X