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April 2020 Chemo Starters

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Re: April 2020 Chemo Starters

If anyone wants to create a WhatsApp group I’m happy to be involved? X

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Re: April 2020 Chemo Starters

Thank you both it’s comforting to know I’m not in this alone! Xx

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Re: April 2020 Chemo Starters

I can really sympathise BC2020. I'm struggling with not being able to do normal life. Thankfully we live on the edge of countryside so are able to get out most evenings when it's quieter and there are fewer people about. But I get really down with not being able to see friends. Talking to them on video calls is good but not the same. This horrible flipping coronavirus..... Sending hugs x

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Re: April 2020 Chemo Starters

Hi Rachael, I’m having chemo at the moment. Round 6 for me too. Start round 7 of 8 next week. I meet my consultant in a couple of weeks to find out what’s next in my treatment plan - radiotherapy vs surgery or both. It is so frustrating not being able to go out. My consultant has said I need to stay very much shielded while on chemo 🙁 xxx

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Re: April 2020 Chemo Starters

Round 6 of 8 for me today. I should feel positive as I’m almost there but I still have a long way to go with surgery then radiotherapy. Not being able to go out is getting to me now I just want my normal life back! Need to pick myself up and get on with it 

 

Rachael x

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Re: April 2020 Chemo Starters

Thanks MrsGo and BC2020. I think I'll stay as I am for now if possible. I think it will stress me more having a PICC line at home than being a pincushion! I'm doing all the tricks to help the staff find veins when they need to like being hydrated, using a hot water bottle and wearing gloves. 

Hope everyone else is doing okay with their treatment. I'm finally starting to feel slightly more energised after my docetaxel last Tuesday. Onwards and upwards x

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Re: April 2020 Chemo Starters

Hi I had a PICC line I hated it personally and today when I had my 5th cycle they gave me the option to keep it or remove it as I can have a cannula for next 3 sessions. It’s your personal choice but if you only have 2 sessions left I’d stay as you are

 

best wishes Rachael

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Re: April 2020 Chemo Starters

I had a PICC line put in yesterday and it was fine.  They were struggling to find veins to use in my only one arm they can use and after a blood test where the nurse put the needle through a nerve, I decided to take the plunge! But I have another 4 rounds....

I found a lump developed where the canular went in and was sore for several weeks after, so I am hoping that is another problem solved!

The only downside is, having the dressing replaced every week which means an extra trip to the hospital  - but it is only another 3 visits! I must admit when I go in tomorrow I am relieved I won't feel anxious about finding a vein!

The PICC line was a tiny bit uncomfortable yesterday where the dressing is tight but otherwise fine today and no problem sleeping with it last night.  I have been provided a shower protector for the arm too.

If you have any questions about it, happy to share!

X

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Re: April 2020 Chemo Starters

How's everyone doing?  I've lost track with who is having chemo when.

I had a rough time on Monday when I went in for my 4th cycle of 6.  3 different nurses couldn't find a vein in my hands to insert the cannula.  I ended up having a little weep in the toilets....  It all felt like too much as I'd got stressed about this 4th cycle anyway.  The nurses decided I'd had enough for one day so sent me home and I went back yesterday morning for another attempt.  On the 3rd attempt they managed to insert the cannula without any problems and I was so relieved my chemo went ahead.

They did talk to me about a PICC line but the thought of coming home with a permanent cannula in my upper arm gives me the willies!  Has anyone else had this put to them as an option?  

My feeling is that I will persevere with being a human pin cushion as long as I can.  I only have 2 more cycles to go.  Surely I'll make it without a PICC line.....

The good news is that today I feel pretty energised and well so am getting on with some work while I feel able to.

Hope you are all doing well x

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Re: April 2020 Chemo Starters

Hero’s sorry gremlins changed that 🙄

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Re: April 2020 Chemo Starters

There is a lot of magic in those kylie gold hot pants 💃🏻💃🏻🕺🕺💃🏻💃🏻She survived bc herself so was one of our oct17 go ros when we were having our disco on the oct17 chemo train, we tried to 💃🏻💃🏻🕺🕺💃🏻💃🏻Through and by the end of chemo we were like the Malcolm mclaren double Dutch video, you just kept bouncing 😁 google it 👍 you focus on whatever you need to focus on or do what ever you need to do for you ❤️ Everyone is different but Together 👭 you’ll get through ❤️💕💕Shi xx

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Re: April 2020 Chemo Starters

I have reached halfway - I thought I would be so happy and yet it feels like there is so far to go still. It is endless and brutal - with chemo every 2 weeks there is barely time to recover before you are knocked down again. But it is comforting to know I am not alone in feeling this - everyone says the time will pass but it seems so slow at the moment, not helped by not being able to have visitors popping in.

I hate feeling so low but I love the idea of donning the kylie pants! I had a hypnotherapy session last week and I was told to visualise the future me - the one that is cancer free. That is an image I am going to try and focus on rather than how many wretched cycles I have left!

Keep going ladies, we've got this!

xx

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Re: April 2020 Chemo Starters

Glad you are home ok rainbow joy ❤️ It’s ok to feel a bit low ❤️ Then you pull your kylie gold hot pants back up and get ready for your next spinning around 💃🏻💃🏻🕺🕺💃🏻💃🏻 It’s just for a bit longer now ❤️ Dig deep and lock in on the bell that you will ring the heck out of ❤️ There was a woman in USA that was on you tube ringing the heck out of her bell and going nuts with joy ❤️ It’s a beautiful clip and for me that’s exactly how it felt ringing chemo bell too 😁 be kind to yourselves, you are all doing amazing ❤️👍💕💕Shi xx

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Re: April 2020 Chemo Starters

I ended up in hospital overnight on Tuesday night with diarrhoea. Thankfully my bloods and other tests came back normal/negative so they didn't prescribe anything - didn't even need to insert a cannula. Home again yesterday. Feeling better now.

It seems to be taking longer to recover between cycles now. I start cycle 4 on Monday (depending on the results of my CT scan which I get tomorrow).

Feeling a bit low. This is tough isn't it. 

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Re: April 2020 Chemo Starters

Bless you it’s brutal isn’t it. I’m 2 weekly chemo so not much time to rebuild before the next cycle. I’ve lost a stone in weight in the past 4 cycles due to lack of appetite feel a bit weak need to build up again 

best wishes Rachael x

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Re: April 2020 Chemo Starters

Hi, sorry I’ve been quiet too. Round 4 hit me hard too Rachael. I’ve moved straight into round 5 which is now weekly (3 weeks = 1 round). Finding it tough having to go back to the hospital twice a week plus feeling rough for a few days post chemo, leaving very little time when I feel ok ish. Just feels so full on at the moment! Xxx

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Re: April 2020 Chemo Starters

I’ve been quiet on here lately just had cycle 4 of 8 and it hit me pretty bad I know I’m halfway but I dread the thought of another 4. Mood has been low and it’s taking longer to bounce back seems like a long road to go. Desperately trying to get my mojo back 

 

Rachael x

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Re: April 2020 Chemo Starters

Thank you all, I am feeling better now so will leave it till Friday when I speak to my oncologist again. But if I start to feel shivery again I will definitely ring. I'm just a bit of a coward really, don't want to have to keep going back to hospital.....  But you're right, they're the experts. Hopefully am recovering okay now though x

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Re: April 2020 Chemo Starters

Rainbow joy please just ring your team and check all ok, no temp does not mean there is no infection requiring antibiotics, it could be a uti caused by chemo, I had no temp but a uti that needed antibiotics. Please keep safe ❤️💕💕Shi xx

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Re: April 2020 Chemo Starters

Hey Rainbow Joy

I am. I’ve had to do the 7 injections for every cycle of my chemo. I’m on #4 of 6.

My first week is rubbish. The steroids I have to take really affect my mood, I don’t sleep and I don’t like doing the injections myself, but I do when doing a WhatsApp call with a different friend each night.  When I get to day 8 something shifts and I start to feel so much better. 

Definitely call the helpline with ANY side effects/niggles.  Even if it’s not the raised temperature. They are there to help and have seen/heard it all before. We’re not the experts, they are. So please do call them. We’re not inconveniencing them. 

I got “told off” very gently by the nurses today when I had chemo #4 for not calling when I’ve felt shivery. As it’s potentially an infection brewing.

I also haven’t been taking my temperature unless I felt strange and got told to take it every day.

I was told that the side effects can be managed, but only if they know about them 🙂

hope that helps xoxo

 

 

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Re: April 2020 Chemo Starters

Sorry to hear you are having trouble with the injections, I had 5 injections in round one and they made me feel so bad that we rang the helpline and advised stopping at 4. After round 2, they reduced it to 3 injections which helped and now I am on one injection of a different type - very happy to dig out the name if it helps?

It's rotten,  just as you begin to recover a bit, the injections set you back.  It was leaving me with only a couple of good days between rounds. 

Definitely tell your doctor but best wishes in the meantime.

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Re: April 2020 Chemo Starters

Is anyone else on injections at home to boost neutrophils?

My oncologist prescribed 7 this cycle rather than the previous 5 and I've felt really rubbish with aches, fatigue, feeling shivery like I have a temperature but don't, and breathlessness. I'm starting to feel better now and didn't ring the helpline as I didn't have a temperature. But it feels like 7 is too much for my body to handle.

Anyone else had this? x

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Re: April 2020 Chemo Starters

Rocking that look Fiona! x

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Re: April 2020 Chemo Starters

20200518_121828.jpg

Here I am working the pirate look, lol! I'm not halfway yet either...6 weeks for me till I'm halfway. But closer to halfway is closer to the end if you REALLY stretch it 🤣🤣🤣

Thanks hon and take care x

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Re: April 2020 Chemo Starters

Hope you get on okay today Steph, am thinking of you. Every dose takes us closer to the finish line when we've completed our chemo. Hope you get on okay and they can give you something to prevent you being neutropenic this time. They gave me injections to do at home and I've managed to stay out of hospital this cycle - yay! Sending you a hug. You can do this.

 

Having said all that, I'm not looking forward to a week tomorrow when I start my third cycle. But I'll then be halfway through which has to be a good thing.

 

Sending 💖 to all of us x

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Re: April 2020 Chemo Starters

Yes I'm dreading eyebrows/eyelashes too.  I find I can work the buzzcut with some makeup and attitude but when the facial features start to disappear too it'll be so much harder!

Good luck for Wednesday Fiona, hope you find it easier this time round.  I'm not halfway through anything unfortunately...

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Re: April 2020 Chemo Starters

Hi Steph, that's exactly what we've been talking about over on the May thread! And kind of framing it as closer to halfway/closer to the end!

I really hope you don't end up neutropenic again too! And have a somewhat easier time this time. I'll be thinking of you tomorrow.

 

I'm glad that taking back a bit of control has helped...it's tough. You did make me giggle though, as my leg hairs aren't shifting and that would actually be something to celebrate! I'm quite worried about eyebrows and eyelashes going, but so far they're still here so I'll enjoy that for as long as it lasts!

Hugs to you for tomorrow and to everyone here. Xx

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Re: April 2020 Chemo Starters

I took the plunge yesterday and got my daughter to take the clippers to my hair.  It had started to shed gradually and I found waiting for it to get worse more upsetting than getting rid of the lot!  It's now very short - shorter than the 12mm setting on the clippers would suggest!  A few tears were shed but at least I feel like this is happening a bit more on my terms now.  No sign of leg hair falling out, worst luck!

Cycle two of EC tomorrow.  I'm dreading it, have been feeling physically very well for the last week and don't want to feel **** again.  I hope they can do something so I don't end up neutropenic again

Three weeks down, 21 to go...

Best wishes and hugs to you all xx

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Re: April 2020 Chemo Starters

Lol!! Exactly! Just had a shower and thought that I wasn't losing any more just now...towel dried my head and my face was covered with little 1cm long silver hairs. Looked like I'd fallen into a christmas tree 😂😂😂😂😂😂

 

Wasnt that funny, but you know....if we didn't laugh..?

 

I'm all for bold colours and jewel tones. Love deep purples, fuchsias and teals in particular!

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Re: April 2020 Chemo Starters

That sounds great. Yes, I'd never thought of my lilac 'chemo cap' making me look like Prof Quirrell but your partner's right, it does.

 

Ade shaved my head to a number 1 this morning. I just want it to fall out now. I've lost hair almost everywhere else already. I wonder if for me it'll happen on my next cycle as I used the cold cap for my first cycle.

 

Like you, I hate the waiting for something bad to happen. Hair - just get on with it and get it over! x

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Re: April 2020 Chemo Starters

Hey Joy, I LOVE the sound of your colourful hair! And the bandana sounds like a good way to replicate some of that.

Shortly after I posted initially about hair loss, my arms started to lose hair and then last night I began shedding from the head. I'm kind of relieved, which might end when it starts to look noticeable, but I want the itchy, stingy feeling to stop and I HATE waiting for something that may or may not be happening. I feel hyper anxious and it's just wearying. So, it's bad but it's good.

I've got one nice beanie, and a nice hat, and a kind of scarfy thing that my partner says makes me look like Prof Quirrell from Harry Potter!!!

I make my own jewellery (as well as buying it!) so I might make myself a pretty pair 'especially'.

Hope everyone is doing ok.

 

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Re: April 2020 Chemo Starters

Hair loss takes more out of us than we realise doesn't it? I tried the cold cap for my first cycle but found it such a faff I ditched it for my 2nd cycle. I also got my husband to shave my hair to a number 3 all over between those 2 cycles in an effort to make it less traumatic when it did start falling out. I understand with docetaxel that it usually falls out after the 2nd or 3rd cycles though I may be getting confused.

 

My side burns (where the grey is!) came out in my fingers a few days ago. Even though they're really short it still felt horrible. My scalp has felt itchy and slightly prickly during both cycles.

 

In a vain effort to keep some control I'm planning to shave to a number 1 all over this weekend. 

 

There are some really nice Beanie caps and bandanna style head scarves around. I ordered a load from eBay before shaving my hair. For years I've dyed my previously long-down-my-back hair a mix of purple/blue and pink or pink and orange so it feels good when I go out to have something colourful to wear on my head.

 

But there's no easy way around this and I can't wait until I'm done with treatment. I'm going to have my hair dyed literally all colours of the rainbow to celebrate. A really great pair of ear-rings also sounds good! x

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Re: April 2020 Chemo Starters

We are the same stages then in cycles I’m every 2 weeks with cycle 3 next Wednesday it’s hard not having much recovery time in between but then we get through our cycles quickly I’m 8 cycles in total are you the same?

Rachael xx

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Re: April 2020 Chemo Starters

Ladies, thank you all so much! It is a great relief to be able to share concerns and ask stuff. I haven't noticed any loss at all but my hair is uber short so might be kinda hard to tell. Perhaps, after my second cycle next week which will be day 21. 

I think whoever said about the anticipation has nailed it....if it's gonna come out then get a wriggle on and fall out already!

Wishing everyone well. And thanks.

Fiona xx

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Re: April 2020 Chemo Starters

Yes there is definitely a very big positive to the hair loss- I’ve barely had to shave my legs or armpits. Plus not having the faff of drying my hair after washing is brilliant!

 

I feel super conscious about what I look like to people now I’m wearing headscarves- it just screams cancer and I feel like people are always looking. Putting make up on and some dangly earnings help a bit but it is certainly an adjustment. I’m just thankful for the lockdown as I’m not sure how I would have coped doing the daily school run! Xx

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Re: April 2020 Chemo Starters

Last Thursday I had my second cycle of EC and yesterday  (day 21), I noticed how sore my scalp was. I dreaded washing my hair but realise there is no avoiding it.  I have spent the last 24 hours with a bin besides my bed, scooping up clumpfuls of hair.  Despite using the cold cap, I reckon I have lost about a third of it already.  It is such a horrible feeling put your hand to your hair and feeling it shed so. I know this is all part of the journey but it is all so brutal. 

Still in bed exhausted and with only 2 weeks between cycles,  round 3 is looming next week.  But with that I am going to start thinking of all the things I want to do do when this wretched journey is over. A walk in the sunshine is top of my list!

I love the idea if beautiful earrings as a distraction....this could be a project for me to start researching tomorrow!

Take care everyone xx

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Re: April 2020 Chemo Starters

It is great to be able to chat about our concerns, isn't it?  I think like the chemo itself the anticipation of hair loss itself is the worst part - that and the actual process of it going of course!  Once it's gone it'll be yet another new normal to adapt to and we'll just get on with it (though my treatment schedule is so long it'll probably be some time next year before I have anything resembling normal hair again...)

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Re: April 2020 Chemo Starters

Hi I’m a week post cycle 2 and today I noticed quite a few hairs on the shower tray this morning and it’s looking a lot thinner it’s hard even though we are prepared it’s loosing some of your identity and the minute you put a headscarf on it makes it obvious you have cancer whereas before nobody would know by looking at you. I’m trying to embrace it by putting some make up on and wearing earnings but I just want to look like I always did and I know for a while I won’t. On the plus side my armpit hair I couldn’t shave because of my lumpectomy scar has become very sparse so every cloud!!!😊 it’s great we can all share our worries on here 

Rachael xx

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Re: April 2020 Chemo Starters

Wow Naomi, EC every two weeks sounds punishing! I felt sick the first week and spent half the second in hospital, it's a blessed relief to have this third week of feeling fairly OK to recover.  Fiona, thanks for the hug, I drop into the May thread occasionally so will have a look there

xxx

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Re: April 2020 Chemo Starters

Hi Fiona & Steph,

I felt very similar to you Steph about the hair loss. I knew it was coming but when it did start falling out, I was in shock I think. After a lot of tears, it took a good week to come to terms with shaving it off, and I have to say I feel fine about it now. My EC cycles are every 2 weeks (just has my 4th today) and I started noticing my hair coming out probably a few days after my second cycle- so about day 17/18. When it did start coming out it was actually quite painful?? The nurse told me that’s quite common after but didn’t realise at the time. I’ve still got patches of hair which haven’t been affect (yet!) and patches where there’s no hair at all. I haven’t bought a wig, am just using headscarf’s for now. Just remember to keep your head covered in the sun! I totally forgot that I was bald in the garden and burnt my head 🤦🏻‍♀️.

Lots of love 😘😘😘 xx

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Re: April 2020 Chemo Starters

Aw hon, I'm sorry!!! It must be a shock 😟 even when you're prepared, you're not really ever prepared. I've had nothing really and I just don't know how to react....I guess I'm feeling bizarrely on edge about it. I don't think the wig helped....doesn't look nice, doesn't look like me, doesn't feel particularly nice.....I think I'll send it back but I don't know whether to ask for a replacement or not....and I thought I was ok on this score! 

They're not kidding when they call it a rollercoaster......I'm sending hugs if you want them......I've seen loads of tips either on this thread or maybe the May one about how to navigate the change in appearance so you still feel connected to 'you'. A fave pair of earrings or some colour......YOU are still here, it's just shedding of an old layer for the new one? Thinking of you xx

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Re: April 2020 Chemo Starters

Hi Fiona, as you know I'm one day ahead of you, also with EC, and yesterday I had my first evidence of hair loss.  My hair has gone soft and floppy in the past week but yesterday I was putting some product in it after drying and my sticky hands came away with quite a lot of hairs stuck to them.  There's obviously no visible difference yet and I've had no discomfort in the scalp but I've no doubt that the hair loss is starting.  Don't want to wash it tomorrow now!  Feel quite tearful, I know this was going to affect me badly but now it's staring me in the face it's even worse.  I guess the clippers will be soon be called for

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Re: April 2020 Chemo Starters

Hello April ladies

Hope everyone is doing ok in general. Can I ask where folk are at re hair loss/thinning? 

I'm 14 days post my first treatment of EC and there is very little, if any, sign of loss or thinning. I'm wondering if this might mean that I'm in the (apparently) 40% who don't suffer CIA (NOT the American agency.....!) Or if it is way too early to even be thinking that might be the case.

I've got an NHS wig through today and I'm really not sure about it. But I don't want to return it in case I might need it......

My scalp has been hot and tingly although less so of late. Any advice suggestions would be great.

Fiona x

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Re: April 2020 Chemo Starters

Glad you’re doing ok RainbowJoy. I had those injections while in hospital and I’m sure they made a big difference. 

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Re: April 2020 Chemo Starters

Sorry to hear you’ve had a bad time my 2nd cycle was last wed so I’m feeling pretty fatigued and have the sore mouth which leaves everything tasting weird. Hope you feel better soon 

Rachael x

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Re: April 2020 Chemo Starters

I'm sure they will Wallflower, sorry you had that though. I had neutropenia my first cycle and had similar treatment. My oncologist adjusted the dose for this 2nd cycle and so far I'm doing okay. She also gave me some drugs to inject into my tummy at home to help my neutrophils boost themselves. Glad you're feeling better now. 

Sending love to everyone. My 2nd cycle was only 7 days ago so still fatigued but otherwise doing okay so far x

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Re: April 2020 Chemo Starters

Steph that sounds so scary! So pleased you’re back home now. Like Fiona says, I’m sure your oncology team will be sorting things for you for next round and will be keeping a close eye on you! Hope everyone else is ok and are able to enjoy some sunshine. Take care all xxx

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Re: April 2020 Chemo Starters

Gotcha!! That means we're pretty much at the same place......mine's is due 20th May. I forget who is who and who has had what, when......!! Well fingers crossed you stay side effect free......sounds like you've had mor'n your fair share!

You take care too Steph xx

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Re: April 2020 Chemo Starters

Next treatment due 19 May. I don’t really have any other side effects at the moment but I expect something will turn up! Take care Fiona xx

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Re: April 2020 Chemo Starters

Aw Steph! I'm sorry to hear that but so glad you are back home safe! What a scary experience. I'm sure the oncology team will do their best to tweak things so that is less likely to happen again!

I'm so grateful that I've been ok with side effects so far.....burningly sore tongue is currently the worst of it but I have a prescription coming to hopefully take care of that.

Thanks for checking in......do keep looking after yourself and I hope things begin to ease up a bit now before next cycle is due! When is your next treatment date?

Love and hugs Fiona x