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December 2019 Chemo Starters

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Re: December 2019 Chemo Starters

Hi Debelina

 

It could be thrush (I have had it once before from antibiotics) and it was very itchy. I know thrush in the mouth is common with chemo so I'm guessing it's a possibility "down below". You could phone the helpline to check and you can get Canesten in Boots. I had a pessary and cream.

 

How are you all feeling? I am day 4 round 2 and have been feeling rougher than round 1. Hairfall getting annoying and messy now. They don't tell you about the practical side of hair loss ie minimising getting it absolutely everywhere in the house, on clothes etc. Just want it gone now!

 

Fiona x

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Re: December 2019 Chemo Starters

Thank u ladies x

Fluffball I love your pill pockets......it’s a great idea πŸ™‚

I am here to ask a realllyyyyyyyyy personal question......I am mortified but I reallyyyy do not want to ring my oncology helpline in case this is normal but I am itchy (not sore) and a bit swollen down below......my temperature is good and last week at chemo I told my Dr I thought I was taking cystitis so had been taking those little sachets......do you my unusualness is being caused my all the different meds we have to take......I haven’t had thrush before so I don’t know how that feels πŸ˜”

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Re: December 2019 Chemo Starters

Debbie

Stay strong  even when you need a break from the forum, remember you're not alone in this xxx

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Re: December 2019 Chemo Starters

Hi Debbie

Sending you lots of love and strength. The bad week will pass...just hold onto that.

xx

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Re: December 2019 Chemo Starters

Sending you loads of love, Debbie. Keep going ❀️😘

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Re: December 2019 Chemo Starters


@Debelina wrote:

Hello ladies...….omg just catching up on all the conversations...….I just wanted to say how amazing you all are......I honestly can't believe the strength you all have, the wonderful advice passed onto each other and the understanding when we need to take a break from the forum (this has been a pulverising (is that even a word?) week for me.....the courage you all have given me over the past hour just reading your posts.....I am in bits and in a good way x

Much love......Debbie x


Oh Debbie... 

 

Big hugs being sent your way, hope you start picking up again, I think the hardest thing about all tuis is accepting that we are going to have some really good days and some ultra crappy days, and it's gonna be tougher every time we get low, especially if we start feeling bad for feeling crappy and cycle ourselves even further down the road to blackness. . 

But... Allow yourself to have the bad times, the good times are so much more appreciated then... 

 

Been to watch 1917 today - if you want to go see a film that allows you to cry a little but also makes you think about being a human being and what it means, well worth watching... X

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Re: December 2019 Chemo Starters

Hello ladies...….omg just catching up on all the conversations...….I just wanted to say how amazing you all are......I honestly can't believe the strength you all have, the wonderful advice passed onto each other and the understanding when we need to take a break from the forum (this has been a pulverising (is that even a word?) week for me.....the courage you all have given me over the past hour just reading your posts.....I am in bits and in a good way x

Much love......Debbie x

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Re: December 2019 Chemo Starters

Thank you for you tip! I had my first on the second cycle today and feel wiped out! Will try before bed tomorrow 😊

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Re: December 2019 Chemo Starters

Hi all, I struggled with the injections on my first cycle to the point of them being the thing I dreaded the most in the second cycle. They made me feel totally off the planet and my bones and joints literally throbbed !! The second cycle I took them at night and took a loratidine about half an hour before and it was a game changer for me! So much better! 

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Re: December 2019 Chemo Starters


@MrsS1968 wrote:

Thanks Lynne

I had mine days 4 to 11. My main problem was headaches but on the last night I had very intense bone pain in my femur, my jaw, knees and shoulders. I was doing them in the mornings but will switch to evenings next round to see if it helps. 

Having my pre chemo assessment tomorrow so will find out what my neutrophils are doing!


Im on the same injection regime. Days 4-11 and also had bad joint and bone pain, i take them in the evening but havnt taken them out of the fridge half hour before so will have to give it a try. Also thinking of taking antihistamines first to see if that helps!

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Re: December 2019 Chemo Starters

Yes, I think I might.. mrss1968! Not as short and see through as it is now, but definitely shorter than I used to have it Xx

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Re: December 2019 Chemo Starters

Rizzer I am tempted to keep it short as it's so easy! I guess I will see how I feel at the other end. Will you? X

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Re: December 2019 Chemo Starters

Thanks Mrss1968! Showing solidarity. I think your pixie cut really suits you, lady. Any thoughts on staying short when it grows back? XX 

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Re: December 2019 Chemo Starters

Stunning lynlucys!

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Re: December 2019 Chemo Starters

Totally rocking it, rizzer!!!

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Re: December 2019 Chemo Starters

Lynlucys and rizzer, looking fab, and well done for getting the pics on! I will try...

xx

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Re: December 2019 Chemo Starters

Thanks MrsS1968

🀞 it doesn't seem too bad at the moment so I'm about to risk a cup of tea and a cereal bar...

xx

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Re: December 2019 Chemo Starters

Fluffball, now I know why mine is giving me a wide berth!! Yep, chemo bottom as well as chemo brain - the evil twins.

My balance is rubbish at the best of times with my dodgy ears so I'd be more likely to headbutt the pole than slink seductively around it 🀣

xx

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Re: December 2019 Chemo Starters

Lynlucys... Looking good lady! 😘

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Re: December 2019 Chemo Starters

Day after chemo 2.Day after chemo 2.

 

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Re: December 2019 Chemo Starters

6458EEB5-F6E4-4128-9250-7B20BC7E1FAF.jpeg

Can’t flip it either mrss1968! 

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Re: December 2019 Chemo Starters

Thank you Madcatlady!!

When I was pregnant I also glugged Gaviscon and chewed Rennies. They have prescribed omeprazole for me but if you need something over the counter until you can get a prescription Nexium is good stuff x

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Re: December 2019 Chemo Starters

πŸ˜‚ Madcatlady, my cats are already freaked out by me, start dancing round on a pole for them they'll be out the cat flap faster than I can chemo-fart at them!!! 😁 

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Re: December 2019 Chemo Starters

Oh fluffball, I just slid off my chair laughing....!  What a fantastic idea - a group pole dance for unsuspecting loved ones/neighbours/amazon delivery drivers/pets 🀣🀣🀣

xx

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Re: December 2019 Chemo Starters

You really suit it, MrsS1968! And when - when - your hair grows back, you know now that you look cool.

Result 😁

xx

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Re: December 2019 Chemo Starters

I used to glug it in the staff toilets - they must have thought I was a secret drinker, only with crusty white bits on the lips rather than red stain - it was the only thing that got me through the last three months! 

xx

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Re: December 2019 Chemo Starters


@Madcatlady wrote:

Hey lynlucys

You're right there πŸ˜„

We're still US, whether we're bald, thinning, scarred, however many boobs we have or don't have, however dry our skin, however sore our poor veins, however runny-nosed, sicky or watery-eyed we are...I could go on...

Our friends and family know that and so do we. Keep strong lovely ladies. We're beautiful.

xx


Lol, and we are SO sexy with it!!!

 

*heads off to perform a pole dance for her hubby*😈 

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Re: December 2019 Chemo Starters

Rizzer you expressed it so much better than I did.

I chickened out of the cold cap as I'm sick of pain and discomfort, plus the added non guarantee it would work, and extra time involved.

I don't think it's vanity at all, we all have to do what we feel us right for us during this mutilating, barbaric treatment whilst trying to retain our sanity.

Stay strong, ladies xMy pixi cut- not sure how to rotate it upright! But it's coming out quickly!My pixi cut- not sure how to rotate it upright! But it's coming out quickly!

 

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Re: December 2019 Chemo Starters

Yes madcatlady! It was the best in pregnancy! I always had a bottle to glug in my handbag. On reflection (and most importantly in your experience) it makes sense that there’s a bit more going on in our systems with this chemo concoction, that requires a bit more than a basic remedy! 

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Re: December 2019 Chemo Starters

Hey lynlucys

You're right there πŸ˜„

We're still US, whether we're bald, thinning, scarred, however many boobs we have or don't have, however dry our skin, however sore our poor veins, however runny-nosed, sicky or watery-eyed we are...I could go on...

Our friends and family know that and so do we. Keep strong lovely ladies. We're beautiful.

xx

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Re: December 2019 Chemo Starters

Totally Lynlucys, I think we’re trying to assert some sense of ourselves over this disease, as it seems to strip away so much of our control over things. God knows there’s nothing in the least bit vain about wanting to keep our hair or being sad when we lose it! I think my decision not to cold-cap was based on much the same reasoning, just manifesting in a different way: I think I wanted to kind of say, do your worst chemo, you can’t break me! That seemed very brave at the time, but now facing the prospect of complete baldness, I’m sure I’ll shed a tear or two... but that’s okay. If I’m honest with myself, in my case it was the opposite of brave too, as I didn’t think I could actually face the disappointment of trying and perhaps failing to keep it, after having put myself thru’ time and discomfort of cold capping. But I’m not going to self-flagellate (sp?) about it either. I made a choice. Just got to be kind to ourselves and each do what gets us thru’ Xx

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Re: December 2019 Chemo Starters

Thanks for that, rizzer. I remember I had something in a bottle (not🍷sadly!) when I was pregnant and it was fabulous. As soon as I gave birth the heartburn went. Perhaps my 'chemo baby' will be as obliging....

They gave me liquid gaviscon in hospital before Christmas after I had the special diet curry for my tea rather than the usual pappy vegetarian offerings; it was great but I got terrific heartburn to teach me not to be rude about the usual menu. I think that may have been gaviscon.

I'll get some tomorrow and also ask about omeprazole at my appt as fluffball suggested and I know that works from the past.

xx

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Re: December 2019 Chemo Starters

Fluffball I too love a good crazy ride! We will all have to be sure to have many favorable ones upon the completion of our treatments! πŸŽ‰πŸΎπŸ’—

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Re: December 2019 Chemo Starters

Thanks for the tip, fluffball. I did have omeprazole a few years ago before I lost some weight and it really helped. I was thinking of asking for it at my pre-chemo appt next Friday.

The box is a really good idea too πŸ™‚ 

xx

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Re: December 2019 Chemo Starters

Rizzer I'm in exactly the same position. I chose not to bother with the cold cap and know it's inevitable. 

I totally understand lynlucy you wanting to maintain your identity too.

I'm finding my pixi cut very liberating, but not sure I will feel the same bald. At least I can still get away with no headwear for now. 

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Re: December 2019 Chemo Starters


@lynlucys wrote:

 

 Just want to be me. It’s not vanity. It’s just wanting a bit of control in this crazy ride we are on. Hang in there ladies. Xxx

You've hit the nail on the head there! It's about saying "you are NOT taking my identity, you are NOT winning"

 

I usually like crazy rides, but not this one!!

πŸ€— 

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Re: December 2019 Chemo Starters

Had 2nd chemo yesterday with cold cap. Other than the nurse struggling to get IV in it went pretty well. Cold cap is cold and uncomfortable at first but with good company in the room it soon disappears. Although I’ve shed quite a bit I still have no bald spots and it’s only appearing thinner. Hoping I can get to 4th and final treatment of TC in mid February and still not need a wig or scarf. Just want to be me. It’s not vanity. It’s just wanting a bit of control in this crazy ride we are on. Hang in there ladies. Xxx

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Re: December 2019 Chemo Starters

Hey Mrss1968, my hair is coming out in handfuls now too! I went for a walk this morning and must have looked like a crazy woman brushing my hair off and pulling small clumps out on the street so it wouldn’t all end up on the floor/shower/bath at home.
Aurore, I’ve booked my husband to take my grade 6 all over down to a 4, just to take it down another notch. Part of me also thinks I should be brave like fluffball and just get it all done. But it’s not like I cold-capped - that’s a different matter- in my case I know there isn’t any hope I might keep it X

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Re: December 2019 Chemo Starters

Hey madcatlady, I don’t know if this is useful info, but I checked with my oncologist (as I have suffered before with heartburn) if I got it if it would be ok to glug liberal amounts of liquid Gaviscon. He said absolutely fine! If nothing else does the trick, I swear by liquid (not tablet) original gaviscon, if you haven’t already tried it that is... X

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Re: December 2019 Chemo Starters


@Madcatlady wrote:

Morning Fluffball 

Really good to hear from you and I'm so sorry your treatment has been postponed again. Hopefully you'll find out more when seeing the oncologist but they do have a habit of dropping surprises on us...

I've got awful heartburn and bloating now so am looking at what I'm eating (anything in sight when the steroid munchies hit). 

Take care 

xx


For the bloating etc I was told to increase my omeprazole dose for five days (so if not on it, perhaps ask? Especially for heartburn as that's why I'm on it in the first place) and to take my domperidone regularly for five days too, and already I'm noticing it's better - so it's definitely something they can help you with... πŸ˜€

 

As fi tablets, I went to Boots and picked up a weekly tablet box with four time slots per day and basically turned it into a 28 day one - so I put all my tablets for my full 21 day cycle in when I get home from the chemo (at least, that's the plan, when it goes to a 35 day cycle, just spend a day crying before starting over!), I've numbered it all up too...

2020-01-10 14.05.01.jpg

 Red being the number day of my cycle, blue being the actual date, (green for the extra crappy delay days! 😁)

 

I find this way at the end of the day I can simply check to make sure I haven't missed anything. 

 

A piece of paper goes in for things like injections etc too so I know exactly when they are without thinking about it after I've set everything up. 

 

The box cost me a fiver, far cheaper than the 28 day ones I've seen and does the job., 

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Re: December 2019 Chemo Starters

Hi Aurore,

 

Yes I take the second lot of steroids at lunch. Not sure if it's them keeping me awake or my mind churning away!

 

My hair is coming out big time. Glad I got it cut VERY short as the longer hairs were driving me around the bend! x

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Re: December 2019 Chemo Starters

Hi all 

hope you are all doing okay and get some decent sleep (I did not). Ms1968 are you taking your steroids at night ? I was told to take them no later than 1pm to avoid lack of sleep. 

Hair loss is still going strong and not sure what to do - wait to see how much is thinning out or be brave and shave. 

Right - back to my lunch, taking me forever to finish 

 

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Re: December 2019 Chemo Starters

Morning Fluffball 

Really good to hear from you and I'm so sorry your treatment has been postponed again. Hopefully you'll find out more when seeing the oncologist but they do have a habit of dropping surprises on us...

I've got awful heartburn and bloating now so am looking at what I'm eating (anything in sight when the steroid munchies hit). 

Take care 

xx

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Re: December 2019 Chemo Starters

Morning MrsS1968

Sorry to hear you had a bad night and hope you catch up a bit today.

That's interesting you get the horrible bit at the end and not the beginning. It seems to affect everyone so differently.

xx

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Re: December 2019 Chemo Starters

Apologies for typos wear glasses next time πŸ™ˆ

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Re: December 2019 Chemo Starters

Ok great thanks. Maybe there is some kind of steroid mixed into the anti sickness meds I've had.

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Re: December 2019 Chemo Starters

I'm a horror - read nothing if I can symptoms I then look πŸ™ˆ my son reads everything then had ALl the symptoms one by one if he's I'll πŸ˜‚

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Re: December 2019 Chemo Starters

Rizzer that's me all over with the drugs!!! Read, reread...

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Re: December 2019 Chemo Starters

Frenchie- it's one of the anti nausea drugs x

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Re: December 2019 Chemo Starters

Hey frenchie, just saw your post. My understanding is that they manage side-effects. They are anti-sickness, but I also think they keep you on your feet so to speak, in the days after your infusion. As far as I understand it they have no effect whatsoever on the efficacy of the chemo itself X