December 2017 Chemo Starters

[Ruth07]

Runaway girl I am so sorry to hear you are having a rough time. I absolutely hated FEC and found each cycle really difficult. As well as very bad sickness and nausea I also found the complete lack of interest in life a real shock. Regarding the sickness Do you have a good GP? It was actually my GP that changed my sickness meds and got me on the meds for my acid reflux - you might want to try that route if the unit aren't that responsive? My GP has responded very quickly to any niggles I have had.
Each time I though I could never do FEC again but slowly you do climb out of the dark pit and realise that you still have plenty of fire and fight left in you. For me it was usually day 11 that I could contemplate life again and hold a normal human conversation. But the truth is it does suck. But you will come through ♥️💕
I am on T now and am really optimistic that it will be much better. I know that there will be SEs but I still feel like a human being which is a million times better than before. Hold tight we are all here to help you keep going. 🤗🤗🤗

[Fiona17]

Runaway you’ve had a really rotten run at it and a cold on top just to drag you further down. Definitely call the number, they will have advice, I’m sure they’ve seen it all before but it’s 💩 when you’re stuck in the mire with no control and feeling plain awful.
Karebear - some quiet thoughts with a candle and photo may help.
I’m so sorry your both having such a tough time. Sending hugs and positive thoughts and hoping you both feel less troubled tomorrow. 😘😘

[Shi]

Darling runaway girl, that’s not acceptable that your trust is treating you like that. Please keep 💪💪💪you can do this. We all have the feeling on this journey that Life is on hold during chemo, it’s unfortunately part of the journey and you still feel like you and then you look in the mirror and think who’s that? But you are still there don’t ever forget that. Call the breast cancer care Number 0808 800 600 tomorrow open 9-1 or today it’s open till 5, they have trained people and nurses for you to speak to and you can get some proper support and answers my darling. 😘😘love you shi xx

[runawaygirl248]

I will mention your experience Shi when I next meet with the Chemo Assessment Nurse.
The Medical Team at our trust just don't seem interested. If you ring the Day Unit they dont return your calls and the Chemo Nurse Coworker doesnt return calls or email. Very disapppinted in them. The antisickness tablet before the chemo, the steroid and the additional 2 antisickness still cause nausea so, so far Im on day 8 and still have nausea. The steriods make me feel like Im on an out of body experience the whole time I take them and I struggle to concentrate. I have real bladder irritation because of the C part of the drug and despite the chemo assessment nurse flagging it and recommending slower IV rate and lower dose it was ignored on the day and the drug was shoved through in less than 7 minutes!
Just really had enough. Never felt so lethargic and lacking in energy and motivation in all my life. If I knew this was how chemo was going to be then I wouldve refused treatment and wouldve taken by 78% chance of non recurrence.
Sorry to rant but the chemo just feels like it has and continues to ruin my life. I'd rather just live my life to the full at the minute that just feel and look like a shell of my former self 😓
Sorry to rant ladies xx

[Shi]

Runaway girl, I am sorry you are struggling this round. Have a good chat with your onc to see if they can lower the dose so you can get the remaining treatments completed. I felt like you do after round one and being hospitalised at the first one. My onc suggested lowering dose to 80% so I thought getting 80% was better than nothing. I was grade 3 tn and mine is preventative treatment too. Please keep 💪💪💪and don’t make any rush decisions about stopping chemo💕💕✨✨✨shi xx

[runawaygirl248]

Started with a bad cold now which is just what I need only a week into cycle 2! Having a rough time this cycle compared to the 1st cycle 😕
I'm seriously contemplating not doing anymore chemotherapy. Fed up of feeling crap, having little social life and feel like Im just "existing" rather than living!
It was only as a reult of my Oncotype Test just tipping me into a higher risk recurrence bracket by 2 points and the fact that my tumour was a grade 3 that Ive ended up with the chemo. Onc is looking to change me to Docextactal for last 3 cycles but not happy about that either.
Sorry to rant ladies but Ive just completely had enough of this preventative treatment already 😕

Karebear - sorry to hear that you havent been able to make the funeral, sending a (hug).

Jo x

[Shi]

Karebear, I know it’s hard to not be there, but please know you are only taking proper precautions and everyone does understand, it’s just so difficult not being able to pay respects, I know darling. I plan to go and lay some flowers when I’ve finished chemo and pay my respects to my family member then. Thinking of you 😘😘💕💕shi xx

[Karebear]

This cancer sucks I feel so useless not be able to support /help the family when they need it.
It would have been stupid going to the funeral and getting an infection

[Chaffinch17]

Try eating little and often, you really won’t feel like it but it does help. I find nuts especially almonds work as do fruit bread or toast, try to include some protein if you can which is where the nuts help. If you have anyone who can cook for you things like scrambled egg are pretty easy on the stomach too. Hope you feel better soon x

[KirstyH]

Hey Sam, sorry to hear the nausia is back, hope they give you better preventative meds! Did that much up your plan of trying to get back to work?
I managed to go and pick up thr lush aqua marina cleanser yesterday, used last night and this morning and my spots already feel drier 😉 its a very fresh and natural product isnt it 🙊😂 xx

[SamH87]

Thanks Shi / Fiona.
I phoned and told them yesterday and I need to phone again today ... but I feel slightly better this morning. Hope they can Tweak it again for the third session in a couple of weeks. 🙂 xx

[Fiona17]

Sam can you stomach a spoon of yoghurt with a bit of honey and squidge tabs between 2 spoons and mix in with it? It might help to slide them down, but only if it’s doesn’t make you gip at the thought of it 😊x

[Shi]

Sam, my onc has had me on akynezo which I take 1 hr before chemo for both the fec and the t and it’s worked a treat no nausea or sickness, so might be worth asking them for that instead. You don’t have to suffer, tell them the antisickness meds not working, ring them tomorrow as they could give you something else straight away. Hope that helps lovely 😘😘💕💕✨✨shi xx

[SamH87]

I should point out I’m on Carboplatin too - incase it’s that instead?? Either way... bleurgh!! Xx

[SamH87]

Sorry to hear of your sad news Karebear 😞 hope all goes tomorrow xx

Shi / ladies on Docetaxel- any tips of nausea? I thought I escaped lightly last round. Took my meds for 5 days as instructed as when I stopped I felt fine. This time I was told 3 day, but I stopped them after 4. Day 5 was fine... yesterday and today have been horrendous though. Been told to start them again but also been given an additional one to take twice a day alongside. The very thought and sight of any kind of tablet make me feel so sick and I’m having to psych myself up just to swallow a tablet without feeling like I’m going to throw up!!
Is there anyone out there who has had this feeling? How long will it last? 😣😣xxx

[Shi]

Glad you got the info karebear. Ali and I are both on Life Mel honey which is expensive but very good too as another type of honey as well as the manuka. I was in the same position as you in November, we had a sudden family bereavement and I couldn’t attend the funeral because of infection risk. If you can get an order of service so you can pay respects from home me at same time as funeral take big place, it will help you. Big hug and ❤️For you 😘😘shi xx

[Karebear]

I went onto October thread and M&S Manuka Honey comes up on top so I'll get a jar tomorrow and see if I can get my bloods up

Thank you ladies for all your support. I can't go to funeral yo jigh a ridk of infections but I'll go and see the family later that day

[Shi]

Karebear the answers to your honey question is on Oct thread darling 😘😘💕💕💕✨✨Shi xx

[Fiona17]

Karebear - so sorry you’re having such a tough and sad time. Sending lots of love 💕 

And Mamadeacs, Chaffinch and others, you all seem to be having a rough ride. I had really dry sore mouth and was using mouthwash given to me which didn’t seem to be doing anything and wasn’t getting any better. Really sore like I’d swallowed boiling water and burnt my tongue, really sensitive too. I went to local chemist and they recommended Biotene which has slowly made a difference may help with symptoms you’ve got.

Hang in there girls and stay strong 💪 xxx

[KirstyH]

I am so sorry to hear this Karebear 😞  sending love xx

[Shi]

Karebear my darling, I am so sorry for your loss 😘😘😘big ❤️❤️❤️And hugs wrapping around you. 💕💕💕love shi xx

[Karebear]

We had a sudden death in our family on new years day so I think it's that as well as chemo side S/E feeling very tired so having a PJ day
Funeral is tomorrow it's going to be a very hard day

[Shi]

Karebear, 0.4 keep close eye on temp as that’s getting neutropenic darling, they didn’t let me out of casa nhs till I was 0.5, strange how trusts operate different. Please look after yourself darling 😘😘💕💕✨✨shi xx

[Mamadeacs]

I’m on day 7 cycle 2. I am supposed to be on 6xFEC but had anaphylactic reaction last week to the C part so not sure what they will do next cycle. While I was in hospital Dr said they could change the whole regime at worst or reduce dose and try again with the same. I have tried Gabapentin and Venlafaxine for sweats and it works for two weeks then bad again. Xx

[Chaffinch17]

I sympathize with the sweats, I wake up hot and wet throw off the duvet then wake up later freezing. I think that I will be on Letrazole because just post menopause, I’m most worried about the joint pain because I love to walk a lot. My MIL is on letrazole and has been fine with it but she is 32 years older than me. Sorry to hear that you are feeling fragile just take one day at a time the better days do come back. What day are you on? One reason I’m glad to be in all FEC is that I’m learning how to manage my side effects so far cycle 4 was ok and day 2 cycle 5 for me and so far not too bad. There are a few different options to try with the hormone treatment I think. Worth mentioning you symptoms at next appointment. They can tweak a lot of things.

[Karebear]

I rang the team and i went to unit they done my bloods. They came back fine the only thing is my immune system is very only 0.4 so I have to be extra careful round people and picking up infections etc.
Another girl I know came off the hormone therapy she said she had no quality of life when she was on it

[Mamadeacs]

Feeling really low this cycle, lots of tears on phone to my husband last night :((. My sweats are getting worse and worse and I feel like an exhausted bald, bloated, sweaty pig. If I put make up on I sweat it off, can’t put wig on as sweat drips down, head gets cold but skull cap gets wet and makes me colder. I don’t know what to do with myself. Worrying ahead about hormone treatment for 10 years making life unbearable with more sweats. I was on HRT for 9 years before bc diagnosis and was taken off it, I used to get hot sweats then and now I get cold sweats...it is weird, I sweat and shiver at the same time. I honestly don’t think I want to take anything after chemo/rads/herceptin is finished. Has anyone else considered not taking tamoxifen or whichever hormone treatment? Is there an alternative? Xx

[Shi]

Karebear, please phone your team if you’ve got something that looks like a rash, one of our Oct girls got a rash and hit it checked out to be on the safe side. Sorry to be such a clucky mother hen, I just want everyone to be safe. 😘😘💕💕✨✨✨shi xx

[runawaygirl248]

I hope your mouth and tongue starts to feel less sore Karebear. Keep drinking plenty of fluids and maybe sucking on some small icecubes or lollies if you can manage them. Ive got some homemade lemonade lollies in the freezer from my 1st cycle which Im going to try today if only to get rid of the awful cardboard like taste in my mouth!
Looks like I may have a cold starting too so keeping an eye on my temperature. Today is a day of resting for me listening to my body rather than trying to do what I mentally think I can do 😊

[Karebear]

I've woke up with a sore tongue and mouth ulcers,using mouthwash but it's very sore especially the tongue.
There are spots on my tummy and legs.
Oh the joys of chemo S/E

[runawaygirl248]

I saw the nurse last month Shi as I thought it was thrush but turns out that it wasnt. Ive got aome mouthwash from the Day Unit but am regularly brushing my teeth after meals and gargling with salt water solution. Its weird how chemo seems to affect people differently isnt it! My usual "weak" points without chemo are my sinuses, throat and gut so stands to reason I guess that they are the ones most affected by the chemo.

Hope you are OK Shi on your current cycle!

[Shi]

Sorry that should have said has your onc given you them, predictive text .....

[Shi]

Runaway girl has you been bc given you difflam mouthwash? You might also need some fluconzole too, I’ve gad thrush mouth every round, it’s common that chemo does this to the mouth. Ring up your unit, you don’t need to suffer when they can give you something. Hope that helps 💕💕✨✨shi xx

[KirstyH]

That sounds tasty Jo, I have been very hungry throughout all of Chemo so far, so hungry on the steroids then still the same whenb they stop lol so 3 good meals and snacks is also what I am having, trying to make sure its all very healthy though so lots of fruit, veg & oily fish as well as some chicken and red meat as well, trying for a good balance.

The roof of my mouth had a slightly chalky/furry feeling for a few days on cycle 1 but havent had it on cycle 2 x

[runawaygirl248]

Day 6 of cycle 2 and the fatigue is in residence. My throat has all white lesions on it again as per same days on my 1st cycle when I assumed it was a viral throat infection I had picked up. Does anyone else suffer or have suffered with this? It leves my mouth all chalky feeling and tasting and is sensitive to hot or cold temperatures.

Question for you ladies...when you finish the steriods do you find that your appetite ramps up?! When on steriods I actually want less food but when they stop I just crave fruit and have problems settling my blood sugar and am literally having 3 good meals a day with snacking between (usually fruits). I wondered if it was just my body craving nutrients that it needs as the chemo is working on the cells and carrying out repair work? Like I say I felt similar on my first cycle until around Day 12 when it all started to calm down!

I'm also craving red meat today (usually eating plenty of chicken for protein) so have popped some fresh stew beef in the oven with mushrooms, onions, peas, pearl barley and bay leaves....can't wait to eat it later with plenty of vegetables and a few potatoes! 😁

Hugs to all.

Jo x

[Mishy18]

Hi Rabbit thats whst they said to me they funded it due to me having the allergy my onc said its too expensive to use as regular treatment only for the emergency situations i wasn't sure how it would work in other Trusts im at N CC trust based in North East but covers large area up to Scotland you should be ok on it the SE are similar to Doxetaxal but less risk for Neutrophils so i didn't need injections with it

[KirstyH]

Hi Ladies, sorry to hear about your failed chemo Rabbit, that is rubbish! but fingers crossed for the Abraxane. Well done on braving the save karebear 🙂 I found it such a releif when I did mine, im pretty much totally bald now and even that I am not mind as much as I thought I would, wearing wig some days and beanie hats the others. Back to work today after the new year break, so back to reality, the xmas and NY period has made things go fast tho and can't beleive its round 3 a week tomorrow already x

[Karebear]

My hair started falling out big time so I braved the shave when getting fitted for my wig yesterday.
My husband and son were great when they seen me. So that's another hurdle over.
Chemo no2 next Tuesday but it's great having picc line in It should take 30mins at most

[drbexl]

Just popping in to say hello... Emerging from the fog of #chemo2, better get to bed! http://drbexl.co.uk/category/cancer/

[rabbit28]

Hi Mishy,

I think you're right both the docetaxel and pacltaxal are bound with the same solution. The sister on unit thinks the abraxane will be better as it is albumin based. I am under East Sussex NHS, I think the abraxane is more expensive but last time I saw the onc she said if the paclitaxel failed they have funding for abraxane. xx

[rabbit28]

Hi Mishy, I think you're right both the docetaxel and pacltaxal are bound with the same solution. The sister on unit thinks the abraxane will be better as it is albumin based. I am under East Sussex NHS, I think the abraxane is more expensive but last time I saw the onc she said if the paclitaxel failed they have funding for abraxane. xx

[Mishy18]

Rabbit jumping in here to reassure you, i had 2 reactions like you and chemo stopped, i was switched to Abraxane for remaining treatment which i tolerated very well, i was told my reactions were probably down to an allergy to the solvent used to make the chemo liquidy if you know what I mean, so it could be given via drip but abraxane isn't made with solvents making it good to use in this type of situation
Just out of interest what trust are you under?

[rabbit28]

Hello all, I've had another failed chemo today with a second severe reaction to desensitized paclitaxel.There was only 1.8ml of the drug in 50ml of saline and the reaction was really quick even after shed loads of pre-meds. Feeling quite despondent now, got an appointment with onc on 11/1 to change me to abraxane. If that's no good then my chemo will stop altogether. Not sure how this affects the future for me if I can't have it. xx

[Mamadeacs]

Tonight I said to my husband I don’t think I can put up with this for another 4 goes. I think it’s fatigue for me as well today. Hope you are feeling better soon Sam xx

[Chaffinch17]

I was told on cycle 3 to double up my Ondansetron for the first couple of days and take the metaclopramide as a top up. I also have Emend for first 3 days. Cycle 4 was best so far for nausea. If you do double up on Ondansetron though make sure you take a stool softener as it can bung you right up, although by cycle 4 on FEC my digestive system had started to go the other way so had less need.

[SamH87]

Mamadeacs - I feel the same. Just been given something to top up the metroclop so waiting to see what happens. The second I think i have turned a corner, it hits me for six and I feel back to square one!
Thank you Shi .. just trying to get there day by day. Hoping things get easier soon! Xx

[Shi]

Sam and mamadeacs each round is different, you’ve done right thing and getting your teams to tweak your meds, better to prevent nausea, keep 💪💪💪you are all doing amazing 😘😘😘💕💕✨✨✨shi xx

[Mamadeacs]

I had bad nausea on first cycle so was given Emend this time for first 3 days with Ondandestron and this worked. I had just Ondandestron yesterday and was ok. I’m also Day 5 and today my nausea is back and I’m feeling worse than yesterday. It all feels so up and down. Xx

[SamH87]

Happy New Year everyone! Let’s hope it really is a happy one eh! 💪🏼
I have a question about anti sickness - I’m currently 5 days post chemo and have been taking metoclopromide which worked last time and for most of this time, except today where I have felt really nauseous! I have phoned the chemo line and I think they are prescribing me something in addition but I was wondering how long nausea should last with chemo? I thought I’d be out of the woods by now??
Xx

[lesley62]

When I am being a normal human being, I work alongside the NHS identifying and implementing efficiencies .... on the admin side of things, but I still highlight the clinical ones that I can see as well. I used to work at the trust I am being treated in so I have 'had a word' with a few people .... whether it will make a difference I don't know but my BCN has promised to do an audit of time taken..... if she has the time to do it!!