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May chemo starters 2018

mustardandgrey
Member

Re: May chemo starters 2018

@Leanne17...yes, I went to Maggies just before my first oncology chemo appointment last month.
I burst into tears as soon as I reached the kitchen as it was bustling, busy and I just came over all emotional. ( a class had just finished)
Everyone was really lovely, and one of the managers took me into a quiet room where we just talked over coffee and biscuits and then I found a quiet area just to sit before my appointment.
It's a lovely building, the staff are wonderful and the atmosphere is very calming. I'm going on the Look Good Feel Good course on 5th June.
I took my parents there a couple of weeks ago for coffee and they were also really impressed.
There's a good library upstairs too.
Sarah xx

Hets67
Member

Re: May chemo starters 2018

@mustardandgrey @leanne17 not in your area but I have a friend who was treated there 10 years ago (and still clear!) who swears by Maggies says they’re wonderful. Bone pain is genuinely just like childbirth, deep in my pelvis. But I’ve been checked out and nothing untoward and have oramorph so nicely high:)
Leanne17
Member

Re: May chemo starters 2018

@ mustardandgrey. My next oncologist appointment is the following week. Think your 1 week ahead of me for treatment. Have u tried maggies?? I’ve not been yet but heard it’s really good xx
Leanne17
Member

Re: May chemo starters 2018

Well 8 days after 1st chemo and quite a lot of hair came out in shower this morning. Got a headache today as well not sure if that got anything to do with the hair loss?!? But other than that feeling ok. Out having a coffee with my mum.
mustardandgrey
Member

Re: May chemo starters 2018

@hets67...hope the bone pain has subsided.
When you start feeling normal again having that appear out of the blue must feel particularly hard.

Sarah x
mustardandgrey
Member

Re: May chemo starters 2018

@Leanne17...small world indeed! Our paths must have crossed at some point at the Breast Care Cenre as it's so small! I'll be there on Monday fof an oncology appointment.
@TraceyMac...hope the headache shifted and you're feeling okay again.
The biggest issue for me at the moment is an ulcer on the side of my tongue, painful, appeared twk days ago.
I'm swishing with bicarb of soda and water when it stings.

Sarah x
Hets67
Member

Re: May chemo starters 2018

Like some of you here and def @mustard&grey I have been feeling amazing the last couple of days!! Have darent even say that to anyone in case I jinx it! However......this morning I’ve worked up with practically unbearable pain in my bones which is right at the base of my spine and also in my chest. Loading up with pain killers now that they said it’s a delayed response to the bone marrow injection and not at blood clot 😱. Thought I’d got away with this particular side effect! Any tips from those of you who have already had it?
Linda Corinne
Member

Re: May chemo starters 2018

Thanks Mai7 and Maise68. I have the toothpaste, a dry mouth spray and a mouthwash from the hospital. May get Biotene gel and mouthwash too. Tried the mouthwash before and it helped as I also take Oxybutynin sometimes which gives me a dry mouth. I am wondering if its from having apple cider vinegar and honey with hot water which I have to make me alkaline and give me the good bacteria. I don't think you should have those drinks or yoghurts so will cut that out to see if it helps.

Tracey Mac
Member

Re: May chemo starters 2018

1 down 5 to go!
I have been reading the threads and getting positive vibes with minimal side effects for some of you ladies. I am hoping those vibes will reach me in Cardiff.

I used the cold cap and the first 20 mins were not pleasant but I kept it on until 45 minutes post chemo. I had light handedness and a headache. Not sure if this was from the drugs or the cold cap.

Went home and ate before going to bed at 10pm. Unfortunately only slept a few hours on and off hence the early morning message drinking tea.

I took emend prior to treatment and they also gave me omdansetron and dexamethasone and also metoclolramide as a back up so I thinkni have the whole cocktail. I have not had any nausea, just can't shift the headache and not sleeping

I hope you ladies continue to do well.
Good luck @ollie_BCC later today for your treatment
Sending hugs x
Leanne17
Member

Re: May chemo starters 2018

Hello everyone. Found this forum very interesting.
I had my 1st chemo last Thursday 10th. Tried the cold cap but couldn’t stick the way it made me feel sick and light headed. I’ve had no bad side effects at all. Only a bit of a headache and high temp last Saturday which passed. My appetite is amazing. Drinking plenty of fluids and getting out and about. Got my wig Tuesday ready!!
I was diagnosed January 3rd. Had bilateral mastectomy and diep reconstruction march 12th. I’m 36 have 2 teenage children who have been amazing. My daughter has even been giving me my injections in my stomach lol. I also live in Swansea and am having treatment in Singleton... small world. Xx
Mai7
Community Champion

Re: May chemo starters 2018

Ladies, you can also get Biotene gel and mouthwash to keep the mouth lubricated and Boots have a dry mouth spray which is handy to keep in your bag. Gengigel is good for mild soreness. Xx

melsy68
Member

Re: May chemo starters 2018

Hi Linda, I don't have a dry mouth ATM but I am using from the start Biotene toothpaste which was recommended to me (it says it's for dry mouth) may be worth trying. I don't suppose it will stop a dry mouth occurring but it may ease it a little X

Linda Corinne
Member

Re: May chemo starters 2018

Does anyone have a dry mouth? Thinking of getting Mauka 15+ honey. Not sure if I have thrush but don't think so. Had ice cubes before eating yesterday which were wonderful and had an ice lolly today again. 

melsy68
Member

Re: May chemo starters 2018

Well this is fabulous news Sarah, let's hope this is how your routine will pan out every treatment. 

 

I too am feeling very lucky ATM.

Monday was treatment - no problems, no nausea, just light headed

Tues - minimal nausea and snoozed most of the day in deckchair! 25minute powerwalk 

Wed- felt fine, no nausea. did jobs, poodled into town, but then crashed for 2.5hours on the sofa! Managed powerwalk

Today- no steroids or anti sickness taken. Felt fine and have just pottered in garden & relaxed in deckchair again! 

Im drinking at least 4 pints of water a day

doing twice daily salt mouth washes

i was on Emend for mon,tues,wed (now told only to take anti sickness if needed,it's not Emend)

 

like others say, I know it's going to get a whole lot harder, but I'm truly grateful for being eased into this situation. 

 

Sat here drinking a coffee and it tastes like chalk..new symptom just arrived! 

 

Hold in there everyone, we can do this  Xx

melsy68
Member

Re: May chemo starters 2018

Well this is fabulous news Sarah, let's hope this is how your routine will pan out every treatment. 

 

I too am feeling very lucky ATM.

Monday was treatment - no problems, no nausea, just light headed

Tues - minimal nausea and snoozed most of the day in deckchair! 25minute powerwalk 

Wed- felt fine, no nausea. did jobs, poodled into town, but then crashed for 2.5hours on the sofa! Managed powerwalk

Today- no steroids or anti sickness taken. Felt fine and have just pottered in garden & relaxed in deckchair again! 

Im drinking at least 4 pints of water a day

doing twice daily salt mouth washes

i was on Emend for mon,tues,wed (now told only to take anti sickness if needed,it's not Emend)

 

like others say, I know it's going to get a whole lot harder, but I'm truly grateful for being eased into this situation. 

 

Sat here drinking a coffee and it tastes like chalk..new symptom just arrived! 

 

Hold in there everyone, we can do this 👍 Xx

Spange
Member

Re: May chemo starters 2018

@mustardandgrey - that’s really good to hear 🙂 and presumably, this should then last up to the second bout - when is that? And maybe this might be a pattern your body follows? Fingers crossed for you. Hope you’re enjoying the sunshine where u are...

 

And I referred to all of us on this forum as ‘Warrior Women’ to a friend today - and the term’s stuck in my head.  Seems v apt xx

mustardandgrey
Member

Re: May chemo starters 2018

So today is day 10 past the first fec session.

Having felt back to normal for the past 5 days or so I seem to have more energy now than I ever did before chemo!

Did anyone else find this?
Because it seems a bit bizarre.
And it can't possibly be thd steroids as I only took them for the first 3 days.
The only thing I can think of is the seven days of injections to boost white blood cells that have worked wonders!

Long may it last, although I'm fully expecting to have a rocky time after bout two.
But the energy thing...

Sarah x

Spange
Member

Re: May chemo starters 2018

Morning ladies - sending good vibes out to you all xx

 

I’ve decided that it would be helpful for me to write down all different side effects that we’re experiencing and the possible solutions to try to give me an easy reference point. I find myself scrolling back through the threads as I’m at different stages of the same journey and suddenly going - oh, yes, I forgot about that! Manuka 15+ honey to prevent mouth sores being a good example. And all the different pills to maybe try for  nausea! Will give me a purposeful list to write and upkeep - I like purposeful lists lol. And need them with my peri-menopausal (possibly soon to be menopausal??) brain. I’ll share the list on here once I’ve done it in case it’s useful to others xx

 

@Tracey - thinking of you today lovey xx The two days of treatment I had on Tuesday and Wednesday were looong, but all was well, no allergic reactions, and all straight forward. First day was the double antibody targeted treatment (herceptin and p....mab - can’t recall what it’s called and sitting happily in bed with a coffee so not getting up yet lol). Went well though I was quite fuzzy and weary cos of the piriton they gave to begin with. But all good. At home I felt shattered, and bit shivery and cold and had a headache, but none of it v bad and temp fine and went to bed. Woke up after couple of hours (for an inevitable pee break!) and felt much better, 

 

Yesterday was the chemo (docetaxol and carboplatin) which I was a bit more nervous about. But no bad allergic reactions. I did have a hot flush and temp went up to 37.9 after 10/15 mins of the docetaxol but they slowed the rate down and all was well, and the hot flush could also have been hormonal of course AND I had a hot pillow on my arm, so may not have been the chemo at all! 

 

Very different day to the first. No tiredness and felt tote fine, though another long day cos they infused it all quite slowly. Home by 7 and full of beans. Steroid-induced methinks...which did have an impact on my sleep....I was wide awake. But not stressed or anxious. And prob got more sleep than I realised, so I reckon 3/4 hours in total, which is doable. Taken the anti-sickness (ondansetron), and hubby taken the day off and planning a wee wander/pub lunch while the small one does his last day of SATS. So.....so far, so good.

 

I kind of feel like I’m waiting/preparing myself for the storm to hit though. And singing a song in my head this morning that I sing at my acapella group - “it’s not about waiting for the storm to pass, it’s about singing and dancing in the rain”

 

Sending warmth and love to you lovelies xx be kind to yourselves today xxx

 

PS - apologies for the essay! Didn’t intend to write so much, but the fingers kept typing and I just let them....

tanya
Member

Re: May chemo starters 2018

Thank you will ask for that
Shi
Community Champion
Community Champion

Re: May chemo starters 2018

Hi Tanya, sorry to hear you have thrush mouth. I got it every cycle and always ensured I got fluconzole in my goody bag from the hospital and had to take it for 7 days. Hope that helps 💕💕Shi xx
tanya
Member

Re: May chemo starters 2018

Well day six of first chemo and all was going well and woke up to oral thrush which isnt nice at all. Trip to doctors for some medicatication. Using corsodil mouthwash and cleaning teeth with soft toothbrush. Has any one else had this and how long does it last please x
Tracey Mac
Member

Re: May chemo starters 2018

How did it go today Spange?

How is everyone else feeling?
Kickass
Member

Re: May chemo starters 2018

Oh Spange, that's great, I am so glad you understood my message. I wanted to just give that strength to all of you to see it through. It can be a hard road but you too are awesome and yes you can do it and it will be over soon. Stay strong, Biggest hugs xxx

Spange
Member

Re: May chemo starters 2018

Sounds good Tracey - yay for anti nausea tablets (I might see if I can get that one too - everyone seems to say it’s the most effective) and double yay for thermometer,. Sending u good vibes for Thursday 🙂

 

i had had the first of two full days, today had the two targeted therapies and tomorrow Decetoxil and Carboplatin. Nervous about tomoz but it will be what it will be, Today went well,,,,no allergic reactions so all good there, home by 7 and in bed now at 9:15. Am tried and achy and bit shivery and cold (first time I’ve worn pyjamas in bed for I don’t know how many years lol) But no fever, and apart from the above feel fine, so going to just sleeeeeeep for a bit, A long day, but Day 1 is now done - a tick box closer to home 🙂 xx

 

Wishing you all good sleeps ladies xxx 

Tracey Mac
Member

Re: May chemo starters 2018

Went for bloods and clinic appointment today in preparation for first FEC this Thursday. We discussed sickness and I was prescribed Emend from the offset which I am pleased about as this side effect has been worrying me. They also gave me my own thermometer so no need to purchase that either. Planning on drinking loads of fluids tomorrow then see what Thursday brings.
Hope you ladies are all coping and keep updating us so we know what to expect. Much love x
mustardandgrey
Member

Re: May chemo starters 2018

@Melsy68 - not yet, that'll be my next emotional wobble 🙂

 

I think it's a bit early yet, washing and brushing as normal and feels fine, but fully expecting it to start shedding in a week or so.

 

Glad you're feeling well, I'm sure the sunshine helps too!

 

Sarah x

melsy68
Member

Re: May chemo starters 2018

 
melsy68
Member

Re: May chemo starters 2018

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Morning all!
So yesterday 14th, was my first FEC75. I have to say I couldn't have been treated nicer. Lovely light and airy ward. The whole procedure was painless and I was home at 6.45pm. Manged to eat dinner and bed at 11pm. Slept well. Up this morning feeling pretty 'normal'..no nausea as yet! took anti sickness... EMEND (apparently the gold standard?) I don't have to inject, for which I'm grateful. Now sat in garden sipping lemon and ginger tea. Hope to go for a walk later and enjoy not feeling too bad whilst it lasts! Xx
So glad you're feeling good Sarah. Has your hair started to fall yet?
Big hugs to everyone xx
mustardandgrey
Member

Re: May chemo starters 2018

Well, I'm now eight days past my first FEC, and while this may be the lull before the storm I'm feeling really good!

 

It was a rocky start, with vomitting followed by three days of nausea and crashing fatigue, shortly followed by a very heavy period just for good measure, but the past two days I've felt completely normal.

 

Maybe it was the injections...I've just finished a seven day cycle of self injecting...but my energy is back up and I've even been enjoying tea again!

 

Hope everyone starting treatment this month is not finding the side effects too bad,

 

Sarah xx

Mai7
Community Champion

Re: May chemo starters 2018

Hi Wingloss, I did 4 rounds of the dozy-tox-hell! It gives you a yucky mouth so it's hard to enjoy food. My mouth was either slimy, sore, white coating on tongue, couldn't taste etc also it causes tiredness day 3-8 so just rest it out. It can also cause depression so if you are feeling low it is a side effect to be aware of.  I found it hard to drink at times but added slices of lemon to my water, drank peppermint or camomile tea, sucked M&S rhubarb and custard sweets (nice and smooth so they don't cut your mouth).  When my mouth was at its worst and I struggled to eat I found vegetable samosas or cottage pie and mango sorbet were about the best foods.

Here is my blog, if you look on the chemo thread you may find a few more useful tips: http://lifeafterlola.blogspot.co.uk

sending hugs.  Hang in there, it's not a fun chemo but you can get through it.  I'm all done and back to "normal" now. Xxx

Joandbasilthedog
Member

Re: May chemo starters 2018

Hi I have just had my chemo date pulled forward to the 22nd May . I am Her 2 positive and grade3 so they are doing chemo before any operation . Been a scary few weeks since lump finding , diagnosis and ct scans but nhs have been wonderful . I know subject to a clear echogram on the heart that i will have Herceptin and Perjeta alongside the regular chemo . I am in a weird place of feeling like my life is just pausing next week . I have to leave work as it is in a school and I am not ready for that and at home have a teenager currently doing GCSES! I am hoping that I can just carry on with little or no side effects but beginning to think i might be a bit deludedly!! X
Spange
Member

Re: May chemo starters 2018

@kickass. Thank you. I started reading your message and all the stuff you’ve gone through and was just thinking ‘bloody hell!’

 

But I read on and you are an inspiration. Thank you for taking the time to post this for us. I’ve taken a v important note to self from it. And that’s that it’s ok to be scared, that I CAN do this, whatever it throws at me, and that it’ll pass. Need to keep on reminding myself of that, so thank you. You are awesome x

 

My treatment starts tomorrow. Not sure what the acronyms should be, but having pertuzumab and trastuzumab tomoz and then docetaxel and carboplatin on weds. You ladies are incredible. One step at a time....we can do this xx

Shocked
Member

Re: May chemo starters 2018

Hi Wingloss

 

im from the January thread - sorry you find yourself on a second lot of chemo. unfortunately I only had one round of docetaxol and I had to switch back to Fec as I had neuropathy but there are some other ladies on the thread that are either just finished or coming to the end of treatment, maybe pop into the thread and post as I’m sure they’d be happy to help and discuss with you in anyway they can. Xx 

Kickass
Member

Re: May chemo starters 2018

Hi Wingloss, so sorry to here you are having to go through it all again. I'm sending you the biggest hug. When I had chemo I had both fec and docetaxel so I have a bit if an understanding of the side effects But It must be really tough to do it twice. I know you have to take each day at a time, in bite size pieces but If you can, try to focus on the prize at the end. You know these horrible feelings and side effects will ease, I wish I could help you through it but you're strong, you can do this. What is it that's the hardest ? Are you struggling with anything in particular ? Anytime you need to talk pm me. Xxxx

Wingloss
Member

Re: May chemo starters 2018

Thank you kickass. This is my second round chemo. 7 years ago I had 6x FEC, now with another tumor back iim on doxatexel and I am having the worst ride of my like.. I’m more prepared than I was last time but this chemo is taking the life out of me.. is there anyone who is finding this chemo as tough as I am. Truly desperate for some interaction with someone on doxatexel thank you x
Hets67
Member

Re: May chemo starters 2018

@anniej yes I had that until yesterday. The anti reflux has calmed down the heartburn and in turn the nausea. Still not quite there on nausea but 80% better so going to see how I feel tomorrow. What an adventure! Ive also started drinking ginger tea which is also helping with the nausea
Anniej
Community Champion

Re: May chemo starters 2018

Hi Hets, have you tried Emend for anti sickness? It's what I was given as I am very prone to nausea. The hospital discounted Ondonestran with my history. I believe it's quite expensive, but we're  worth it! 😘

Tracey Mac
Member

Re: May chemo starters 2018

@kickass thank you for sharing your experience with us. It is very helpful to be prepared and have tips and suggestions on deslingnwoth SE,
I hope everyone is doing well that have started their chemo and sending positive vibes for those of us starting this week 👌
Hets67
Member

Re: May chemo starters 2018

@jk71 I hope you get some tomorrow if they agree it’s right because I feel so so much better. Hope you get some rest in the meantime x
Jk71
Member

Re: May chemo starters 2018

Thanks @hets I will call the helpline tomorrow but I’ll try to get some gaviscon tonight. I’m glad it’s helping you a bit, hopefully it will continue to get better. Xxx
Hets67
Member

Re: May chemo starters 2018

@jk71 after waiting all day for out of hours doc to call me back I’ve finally got my hands on more anti sickness (omeprazole) but more importantly ondanestron which is what my consultant wants me to have for the heartburn which is apparently a proton suppressant? It does seem to be calming down and I’ve managed to slowly eat a small bowl of pasta. Are you able to get hold of your 24/7 line? In the meantime I was told gaviscon is fine and have been taking it since yesterday, and I was also advised today in case we missed out of hours pharmacy to take ranitidine which you can get over the counter is can be more effective than gaviscon, although tbh once I got it I think it had all got too bad for that too. I hope you manage to get what you need, and that this helps you ask. Today’s been horrible so I feel your pain!
Jk71
Member

Re: May chemo starters 2018

I’m back on a couple of days after treatment. The nausea was the worst but now 3 days later like @Hets67 I’m suffering hiccups and really bad heartburn. Can anyone advise if it’s ok to take gaviscon or some other over the counter heartburn meds. It’s driving me mad and I get it no matter what I drink or eat. Thanks in advance ladies xxx
Janie L
Member

Re: May chemo starters 2018

Thank you 🙂
Janie L
Member

Re: May chemo starters 2018

It does xxx
Janie L
Member

Re: May chemo starters 2018

Hi Hets, I didn’t even try cold capping, couldn’t face it. Yes, I do have a bit of difficulty swallowing sometimes too xx
Kickass
Member

Re: May chemo starters 2018

Hi everyone, I hope you all feel this is appropriate for me to message as It's 1 year and 11 months since I started chemo. However, I so know how you feel and wanted to share my experience.

 

March 2016 I had full mastectomy and immediate recon, removal of all lymph nodes as grade and stage 3

i pulled out the drain so needed implant replacing after 3 days (oops 🙈)

another op as implant too big (as some of the skin involved so needed removing so had a smaller one put in )

had chemo June to sept (several hospital admissions with vomiting once and a few infections)

Another op as skin not healing

started radiotherapy in Nov 2016 (uneventful 👍)

Started letrazole but joints so painful stopped this and started tamoxifen. This is almost my journey but tried to cut it short 🤓

 

So my message is this; looking back honestly, it wasn't that bad. I read a lot of messages which said 'it's doable' and didn't really understand what that meant then. But I truly believe if you know exactly what you're about to experience it's easier to tolerate. Yes it's hard at the time and different for everyone, you feel so alone. But you're not, we're in this together. Ask anything and one of us will try to help. It's Very scary, I felt at times like that was how it was always going to be. But each chemo session was different for me. The first time I had chemo, I looked in the mirror and saw wide blank eyes looking back at me and wondered what the hell it was doing to my brain, I was terrified. But only because I thought everything that was happening to me was permanent. It so isn't though. So many of the side effects either go away completely or are much more tolerable. The sickness passes, you'll get stronger. Just look after yourself, eat well and drink lots of water to flush out. Eventually the tiredness lessens. It's taken me over a year after all the treatment finished, to feel almost normal. I still get tired, but before......I'd get up feeling knackered, and feel like a deflated balloon. People said my words would slur and they'd know I was tired. Then I'd manage an hour before I deflated and that hour became 2 then 3 and so on until now most of the time I am ok. If I do anything strenuous then yes I still start to slur my words and go down like a deflated balloon but after a nap, I'm back to normal. You'll get there 💪

I started a couch to 5k running club 3 weeks ago. I've never ran before but thought I'd have a go. I'm 54 and I try to have a go at most things now.  I take every day at a time. If I feel tired, I rest. If I feel energetic I go for a walk. But my biggest bit of advice would be, be kind to yourself; don't be hard on yourself and don't have any expectations because whatever you are feeling is perfectly ok and no one can judge you as you're an individual and you deal with it the best you can. Biggest hugs xx I hope this gives a positive message 

Linda Corinne
Member

Re: May chemo starters 2018

Just read my last post which should have said I got my thermometer from superdrug and I need bojela!

Hets67
Member

Re: May chemo starters 2018

Got the answer about my injection, apparently it’s just a high dose one hence why I only have one (phew!)
tanya
Member

Re: May chemo starters 2018

.Hello again not posted for a while. My first FEC/T chemo yesterday one of six and all went well. The nurse was lovely and sat with me while administrating slowly and explaining what each drug was and side effects. All went well with no reactions, as of yet I haven't had any symptoms of sickness or anything and feel quite well. How lol omg is this going to last I ask myself!!!! Hope all you lovely ladies are doing well. And although I don't always say a lot I'd like to let you all know that your posts are an inspiration to me ❤️❤️❤️
Hets67
Member

Re: May chemo starters 2018

Gosh haven’t been on here for a few days (got super anxious doing too much online so banned myself!). You’ve all been through so much already but it’s really helped reading through, I had first session on Thursday. Tried cold cap but just couldn’t cope so ditched it after 15 mins. V distressed at the time but I know it was right for me - the rest was a breeze after that! But don’t not try based on this - I’ve read it affects everyone differently. Day 3 (actually starting last night) my biggest problem is heartburn and hiccups, has anyone else had this? I’m going to call the nurse a bit later because this morning it has been hurting when water/tea/breakfast goes down my osophegus (at least I think that’s the part of my body I mean!). Also you all seem to be talking about multiple injections whereas I was only given one (I’m on FEC 100). Is anyone else only doing one? I might enquire about this too