June 2018 Chemo Starters

[cdc1811]

Hi Kip glad to hear you are faring ok so far. Long may it continue! My Mum will come with me on Tuesday as my OH has an extremely important meeting with some people who are flying over from Canada. I’ll make sure my Mum writes down any key points. Hope your daughter had a super day trip to France and you’ve managed to get some rest after such an early start and working so hard xx

[cdc1811]

I’m really hoping I’ll have some time to talk with the nurse before they start the treatment Sally. It’s great you got to pick your seat and got introduced to all the people working there,  Funny you mentioned Love Island as I watched my first ever episode a few days ago.  Entertaining in a way! 

[LJ]

Glad to hear it's going fairly well Kip - long may that continue!

Sorry your pre-chemo's been cancelled CDC. Mine is on Sunday morning - think that's when it'll all start to seem very real 😱

Have to say im quite apprehensive about the PICC line. Not the fitting, but coping with it 🙄 Guess I'll adjust soon enough. 

Came me home today to an appointment letter for an echocardiogram in a month's time. Took me by surprise, though when I looked back over my oncology appointment notes I had written down about it. Same day as the Look good, Feel good session I'm booking onto. Honestly before this the only time I'd been in hospital was being born - making up for lost time now 😂

Thought you might like a pic of these peonies from my garden to brighten up the day. Hugs all

LJ

[Jencat]

Kip, I found that the seasickness bands worked for me, but like you, I was nervous to take them off! I tended to keep them on for a few days until I'd finished taking the anti-sickness tablets. I probably kept them on too long really, but I didn't want to risk it! Glad you're feeling ok x

[Kip]

Hi Ladies,  Well reached day 5 now!   Yesterday was pretty good, I felt a little nauseaus when I woke up but ate breakfast and kept it down.  I waited until 11 then took one of my "as and when" sickness pills which seemed to work and then felt ok for the rest of the day, managed a walk with the dog, had a friend round then stayed up til 10.  Unfortunately had to be up at 5am this morning as daughter gone to France with school fro the day and didn't want to miss saying goodbye, so went back to bed for a lay down til 8 so expecting to be sleeply later but other than the normal "pregnancy sickness" feeling again this morning, now ready to start work at 9 for the day.   Just so glad I work at home, makes it so much easier.

CDC - what a nightmare about your pre-chemo appt.  I never really got one either, I met my Onco nurse at the resulst meeting and she gave me a quick chat and a short tour of the unit.  Most of the info is in the booklets they give you but its still nice to ask someone face to face.  On the day of my chemo, the nurse showed me all around the unit and did lots of explaining and as she has to sit with you to administer the chemo (well with FEC at least) you have a lot of time to ask things, just remember to take notes (or getting someone to).  My OH wrote down about the meds and when to take them etc.  I also had some questions I wanted to know about.  Nice you got to see the end of sportsday even if your daughter didn't seem to notice, she will have and it will have made her happy!

Sally good to know the follow up appts between chemos are short and sweet, would make sense just to have a phone call though wouldn't it, we spend half our lives at the hospital as it is, one less trip would be heaven!

[SallyG63]

Morning,

Dunno if they do offer it or not, from what the lady that called me said I shouldn't think so.

How annoying they cancelled your pre-chemo. most of it is in the booklet but it's an opportunity to ask questions, get shown round the chemo unit (and I picked my seat too right by the window) and get fitted for your cold cap if you are wanting to try it. I was also introduced to all the ladies that work there. Having the appointment made it far less daunting on the day of the first chemo. It was a useful appointment. Hopefully they can sort out to see you before you start the chemo.

Last day of a full week at work after chemo for me. Been working 9.30 ish to 3 and it's been fine. Tired by the time I get in but I'm making myself stay up at least till Love Island (I know, I know) so that when I fall asleep I don't wake up at silly o clock.

Have a good day all

Sally.

[cdc1811]

Do they offer FaceTime appointments? My oncologist has said she sometimes does this if it’s more convenient.  Glad the cold cap is working Sally.  I got a call at 7.30 this evening to say tomorrow’s Pre-Chemo appointment is cancelled due to shortage of staff.  Now I really feel in the dark!  Apparently most of what they say is in the chemo booklet but I’d prefer to talk to someone face to face. 

[SallyG63]

Kip,

When I had BC the first time my youngest was 6. The oldest was 16 and a couple in between. We told them altogether. I remember my son asked if I was going to die. I told him no and he just accepted it.

It looks like my oncologists want to see me after every cycle to check I'm ok. Saw them yesterday and was in and out in 5 minutes having reported no side effects and was just given the go ahead for next cycle. They then gave me an appointment after that before cycle 3. Got a call today asking to change that appointment to mid morning which is quite inconvenient when I'm doing short days at work as it pretty much knocks the whole day out. I asked if they can do a telephone review because if there's nothing to report it's pointless me going in and if I do get rough or anything in the meantime, I'll contact them. Waiting to hear if they can do that. I got paranoid today when a single hair fell out, this from the woman who used to have to rinse her hands when hair washing her previously long Hair 🙂 Have just washed it and still nothing coming out, so far so good for the cold cap.

[cdc1811]

I think you provided your daughter with an honest but reassuring answer Kip. Great that you got her to her swimming lesson. I managed to catch the last fifteen minutes of my daughter’s sports day after her meltdown when I said that I wouldn’t be able to go. To be honest I really wish I’d gone and had a nap instead. She was having such a good time she barely battered an eyelid when I turned up!! Oh well it’s good for her to have as much normality as possible but I was a little miffed that I’d made all that effort!! With regards to the anti sickness meds, The advice I got from the former head chemo nurse at Barts (who now manages the Maggies Centre) was to continue to take the meds anyway even if you don’t feel sick. Will see what they say at my pre-chemo appointment. Slimy mouth sounds grim but glad the mouthwash is helping. Definitely one to put on my shopping list. How is your son doing? My nephews had a day off GCSEs today but back to it tomorrow. Take care and best wishes xx

[cdc1811]

Hope you find the Facebook group helpful Linda. I spoke to a lady I volunteer with and she managed to keep most of her hair using a cold cap. Hopefully working out when to wash out the conditioner etc... will make a difference. I’m wondering how the biotech toothpaste differs from the one my dentist prescribed. Will take a look at the description on the Boots website. Take care xx

[Kip]

Thanks Shi

[Shi]

Ladies before you all bomb off getting expensive wigs if you have a luvyababes near you check their new range out, I ended up happier with a 14.99 one from their compared to my very, very expensive real hair one my darling husband purchased for me. Also paint fingernail black polish to protect from uv light so you don’t loose them and rub vitamin e oil into cuticles. If your skin gets dry a firm favourite of chemo threads is udderly cream with added urea on amazon 💕💕💕✨✨✨Shi xx

[Linda Corinne]

Yes the matt was there 2 days after using the cold cap as was told not to do anything to my hair for 2 days.they said it may not have been in contact with my head yesterday.i think i should have washed the conditioner out straight away in hindsight as that worked the first and third time.theres a facebook group for coldcapping i have joined for advice.
I order biotene toothpaste from boots and pick it up at my local boots store.

[Kip]

Ooh just remembered another tip my chemo nurse gave me for slimy tasteless mouth... buy some Vit C fizzy tablets (the sort you put in water) and suck on a quarter of one, apparently livens up the tongue?

[Kip]

Thanks Shi,  I am using the anti sickness bands, just daren't take them off...just in case!   Not sure when to?

CDC - my daughter asked me last night if my cancer will come back... so hard to answer isn't it, I just wanted to sob... I told her "Nobody really knows, but they are doing everything to get rid of it and then I will be closely monitored and if it returns they will find it quickly".. what else can you say?   Sorry you haven't had much help from school, thats the last thing you need isn't it.  I had a good rest of the day yesterday, even took daughter to her swiming lesson last night. Slept well (apart from the wind rattling the windows).  Managed to keep breakfast down today, and have finished the anti-sickness tablets now (although I do have another type for as and when but so far not taken them).   Last day of steroids today so I'll see what that brings.  Now back at the PC ready for a mornings' work, feeling a bit tired but pretty much ok.. fingers crossed!

Oh yes, nearly forgot, used the Biotene mouthwash and its really quite nice, very mildly minty but definately helps with the slimy mouth.  Still need to locate the toothpaste,  hubby wasn't up to going to Boots and Superdrug.. duh!

[Shi]

Also ladies, let your units know if your antisickness meds not working, they will try you on others till they sort it for you, you don’t need to battle on through that too. Also some of the ladies who did chemo with me used the antisickness motion bands which helped them 💕💕💕✨✨✨Shi xx

[Shi]

Cdc, keep eye on your moth it could be oral thrush, unfortunately a se of chemo for some, I had it every cycle, you need to ring your team and get that sorted, best things they can give you are fluconzole and difflam mouth wash. Ladies, even if you’ve no temperature but you don’t feel quite right about anything, please phone your rapid response numbers just to keep safe 💪💪💪you will do this together with a lot of ❤️❤️❤️👭👭👭👭👍👍👍💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻💕💕💕✨✨✨✨Shi xx

[cdc1811]

Hi Kip Your kids’ school sounds lovely! I’ve been disappointed in my dealings with the Head at my daughters. He couldn’t even look me in the eye when I tried to talk to him earlier. Haven’t had much contact with my daughter’s two teachers either. How thoughtful that yours gave you face packs and chocolates!
I’m also dealing with the new haircut phenomenon. Had lots of lovely comments then wonder if I should say something. One of the Mums from school who I get on with really well has offered to pass the news on for me so maybe I’ll do that too. I keep feeling very tearful so I sympathise. Hope you enjoyed a breath of fresh air and that the sickness stayed away all day. It’s Interesting to hear that your hospital are no too worried about when you have the CT scan. My hospital, Barts has gone mad trying to arrange tests/scans before I’m supposed to start my chemo Tuesday. They have no appointments there so I’m having to go to a different hospital for the bone scan (tomorrow at Newham) and the CT scan which is now booked at the Royal London on the same morning as my first session of chemo at Barts. It’s utter madness! Just want to get them out of the way now. Hoping for fewer appointments once the treatment actually gets under way. I’m feeling rather shattered as my daughter had a complete meltdown earlier when I explained I could no longer go to her Sports Day tomorrow. She then apologised for making my life more difficult because of her behaviour. This morning she asked “People don’t die of breast cancer do they?’ It’s so upsetting but we had a lovely cuddle and a good chat before she went to bed so hopefully she’s feeling reassured. I do hope your son is feeling ok about his exams and both he and your daughter are feeling supported by the school. Sending you big hugs and my best wishes. Xx

[cdc1811]

Hi Linda I expect they’ll talk to me about a cold cap when I have my pre-chemo appointment. Unfortunately I’m prone to migraines and they’re not recommended if that’s the case. How have you found it? Did the cap cause the matting?

[Linda Corinne]

Hi @cdc. Also look at this thread but am on the May one primarily. I used the cold cap again today although they aren't sure if I could as I had to have it cut short after last chemo as I had a big mat at the top which had to be cut out. If I lose more on top I will need to put gauze on that area next time. Have you got the option to use a cold cap?

[Kip]

CDC, I have kept my children's school informed of every step of my treatment and they have been great, they have weekly meetings with my daughter who is 13, just for a general chat if she needs it.  Her teacher even sent home face packs and chocs for half term so that we could have some pampering together.  School also put something in place for my son in case he had meltdown in exams.  My children are at high school so I don't have the playground attention but living in a village has proved hard going out with new haircut as everyone notices and comments, after 2 ladies had commented and I explained (all the time fighting back tears) I went home and hid.  I have asked the friends who know to pass on to others to save me and them embarrassment.  It's a hard one coz nobody knows what to say.  Good news is no more sickness so far today, just a bit fuzzy head but managed lunch ok.  Hubby has purchased biotene mouthwash but couldn't find tooth paste so will see how that goes and let you know.  Hospital just called to say doesn't matter if CT scan not done before appt as they just want to see how I have coped with first chemo and make any adjustments to medication.  

Now off to walk to shops, need some air.  Take care everyone Kip x

[DawnT]

Am not sure, mine was from the gp when I rang up in tears lolxx

[cdc1811]

Sounds like a bit of a mixed night/day Kip. Sorry to hear you were sick. I had terrible morning sickness when I was pregnant. It lasted throughout the day/evening so I've just been telling myself if I got through 9 months of that then I can do 6 months of feeling something similar on chemo. I'm going to try the eating before taking the anti sickness medication now you've shared your experience. It's great you are getting the kids to school and keeping things as normal as possible for them. Sending good luck wishes to your son! I've been told children are remarkably resilient but it doesn't stop me feeling guilty about how my diagnosis and treatment is having an impact on my daughter(and my OH). I took my her in this morning and managed to run into the Headteacher so explained what was going on with my new treatment plan. Think I need to have a proper sit down with him at some point. What have you told your kid's school? I'm just aware that my daughter has started saying she has too much work to do, doesn't see her friends enough, doesn't like going to breakfast club on the days she's not used to etc..... She sometimes comes across as very self-centred and unsympathetic but I think its just her way of expressing herself. She usually adores school so I can tell she's unhappy. Im feeling a bit nervous of going into the playground with a hat/wig/beanie or whatever and being the subject of speculation. I've only told a few people and now I'm wondering if I should bite the bullet and tell the rest of the parents/carers in my daughter's class. I suppose I should have a couple of weeks before I start losing any hair so have time to make a decision. Im glad we're coming up to the Summer holidays and I won't have to deal with that particular issue for a while. Hope you manage to have plenty of rest especially if you're going to do work tomorrow. Take care xxx

PS My delightful spit substitute is called Xerotin. It's a mouth spray but I might give the Biotene oral balance gel a go and see if it's any better.

[cdc1811]

Thanks for the heads up Dawn. I won't chuck out the fake spit just yet then!  Mine was prescribed by the dentist.  Not sweet as such just a weird taste but better than a disgustingly dry mouth I expect. x

[Kip]

Is that something you can buy over the counter.

[DawnT]

Trust me ladies - at 2am when your lips are glued together and your tongue is stuck to the roof of your mouth and you can't swallow - fake spit is the way to go!! Biotene oralbalance gel - it's incredibly disgustingly sweet but if you can poke a bit between your lips it works. Happy days x

[Kip]

Morning all, day 3.. had pretty good sleep, woke once feeling sickly but fell asleep again, must help taking steroids morning and lunch?  Had cup of tea first thing and can still taste it yayyy!!!  Took anti sickness and had toast which I enjoyed but then from nowhere i was sick, not too much but felt immediately better, very much like morning sickness.  Think I need to eat before taking anti sickness to make sure it's not bought back up.  Feel ok now, mouth little coated but not too bad.  Got kids of to school, feel so guilty they have been thrussed into this world.  My son has 3 more GCSE s and then he is finished, can't believe he has managed throughout this nightmare.

CDC I know what you mean about adverts etc seems they are everywhere.  I can't watch either!  I'm hoping to do some work tomorrow if things stay ok, will be good to do something normal for a while.

[cdc1811]

Ugh I suppose it is just fake spit Sally. No wonder it tastes so grim!!!!

[cdc1811]

Hi Kip. Good tip about the travel sickness bands! Hadn’t thought of that. Anyone else using them? Wonder what makes the Biotene toothpaste suitable? Will look into that. Will check Difflam ingredients too. Just typing this with one eye on the TV and a scary Macmillan advert came on!! Someone going through chemo getting their head shaved! Really don’t like seeing adverts/charity shops to do with cancer at the moment. Too close to home. I volunteered at my local Memory Cafe today and one of our service users told me she’d been through BC treatment. She told me if she was to go through it again she would get a wig. She said she hated it when her hat or scarf accidentally got blown off. I’ve been very resistant to a wig but it got me thinking that it may be worth trying some. I know I’m entitled to a free on at St. Barts. Hope you have a good nights sleep and continue to be side effect free! Hugs xxx

[Kip]

Yes my Inc nurse said salt water mouthwash us good idea

[Kip]

Hi all, so far mouth ok, bit coated on tongue but nothing much.  I have read on here that if it gets bad use Biotene toothpaste and mouth wash available from Boots/Suoerdrug as it's especially for chemo guys like us, there is also a spray I think and they all deal with dry mouths, haven't got any in yet but may send OH in tomorrow to be prepared.  Also ladies recommend speaking to onc team or go to Gp for Difflam mouthwash for soreness or ukcers is needed.  

Now off to take anti sickness before bed and I'm still wearing my travel sicknes bands, darent take them off in case they are doing the trick ... Its not a good look as ones black and one is camouflauge pink!!  Oh well now i have one boob and once the hair goes and I am eyebrow less 2 weird arm bands will be nothing!!  

Sleep well all XX Kip

[SallyG63]

Putting fake spit in your mouth doesn't sound altogether enticing 🙂

[cdc1811]

I bought a new water bottle today so will carry that with me,  Has to be better than the grim saliva substitute! Something in the saliva protects the teeth though so maybe that’s why my dentist prescribed what he did.   Just a  thought - I wonder if chewing sugar free gum would help? I’m allergic to the ingredients in some mouthwash so the warm salt water gargling is a good idea.  I think ulcers are another side effect we’ve got to look forward to and I do remember my Mum getting me to gargle with saltwater if I had them as kids.  

[SallyG63]

Wouldn't it be easier to just have a bottle of water on the go to constantly sip from for a dry mouth? That'll keep the fluids up too? I know I was told the best thing for a sore mouth if I get one is the warm salt water gargle. That's my go to remedy for sore throats anyway so I know that works.

[cdc1811]

Just out of interest has anyone been told to use a special toothpaste? Went to the dentist today for a check up and he prescribed Duraphat 2800 ppm fluoride toothpaste. High fluoride content supposedly lessens likelihood of decay and therefore of infection. Will check with my onc before I start using it. He also prescribed some Xerotin which is a ‘mouth moisturiser’ as I’m not producing enough saliva. Just tried some and it’s really grim!! Think I’ll have to find something else to relieve my dry mouth.

[cdc1811]

I think the A in my regime is similar to the E in yours Sally. Glad you are not having to deal with side effects at the moment except for the runny nose. . Fingers crossed you won’t have many, if at all🤞 Take Care xx

[SallyG63]

Sounds like everyone is having different stuff. I had to have 4 steroid tablets a day for three days which played havoc with my blood sugars. I also have to inject filgrastim once a day for 8 days to boost my white cells. That's with the EC.

Thankfully still waiting for any side effects to kick in. My taste is still the same and I'm eating the same as normal. Have a runny nose but that's standard for me all through the summer even with hayfever tablets. I have a review with my oncologist tomorrow. Hopefully everything will stay as it is for as long as possible.

[cdc1811]

Phew Kip! We’ll have the injection once we’re on the T by the sounds of it. I’m definitely not fasting as my oncologist told me not to as she had just had a lady collapse on her because she’d been doing that. Having said that a friend of my sister’s reckoned it worked. She also said getting out every day and walking even for a very short distance helped her feel less fatigued. I intend to eat smaller meals more often and have a little stroll on a daily basis. I think everyone reacts so differently. What snacks are you nibbling on? Have you noticed any changes in taste yet? Good idea to get nurse to check thermometer. We have an ear one but don’t know if it’s accurate. Hope you’re still feeling ok. Not surprised you’re feeling teary though. It’s a massively emotional and mentally draining situation. Take care and big hugs to you too xxx

[cdc1811]

Hi LJ Just saying Hi and welcome to the thread. I start 6 months of chemo the day before you following an unsuccessful therapeutic mammoplasty and reexcision on the right. (I have bilateral cancer) I’m due to have a mastectomy in January. Having 4xAC then 4xT but no Herceptin. .
Sorry you’re having to go through chemo too but I find everyone so helpful on here. It’s great to be positive but don’t worry if you also want to have a rant at times too. It’s a safe place to do so and we understand! I have an OH, nine year old daughter but no pets. Love reading and singing but my skills don’t run to cooking of any kind or knitting or crocheting although I’d love to learn. Hope you have a chance to relax this week even with all the appointments. Take care

[cdc1811]

Hi embolorry I start chemo next week but I have heard that the hairs in your nose get damaged and then you lose them and this is why you get a runny nose. It’s a side effect I’ll be on the look out for. Sorry your nose is sore. Anyone else experienced this and if so does anything help? X

[Embolorry]

Anyone who had chemo on the 4th June, have you got a runny nose?????
Don’t know if it’s hay fever or chemo side effects? But my nose just won’t stop..... it’s getting sore from the constant wiping!!!
Xx

[Kip]

Hi LJ, sorry you find yourself here but very glad to have you and your positivity here!! You will see I had my first chemo yesterday and it went well, quite straightforward, feeling fine today still, fingers crossed. Keep posting it really helps xx

[LJ]

Hello Ladies. 

After diagnosis in early April and a WLE with SNB on 1st May, my first chemo cycle is set for 20th June - 3 x FEC and 3 x T with Herceptin injections is the plan. Before then I've got an optician appointment, bloods, the chemo nurse session and a PICC line to be fitted - be a busy old week. 

Just a little about me as I think we'll be roomies for a while 😉  I'm married with no children and one dog. I read, knit, crochet, bake and sing. I talk quite a bit too!

I'm a pragmatic soul, and while I'm under no illusion about this being an easy ride, I am determined to stay positive - remind me of that will you 😊

Look forward to sharing with you

LJ

[Kip]

Oh and my team advised to paint nails clear so they can keep an eye on the nail beds.. wish every hospital said the same thing!

[Kip]

CDC, sorry I didn't mean I have to inject them, don't panic.. it's 2 tabs a day for first 3 days i think.  Chemo nurse said you get the injections to administer with the T part.  I know it's overwhelming isn't it, I feel physically fine today but mentally teary, day 2 and so much more to come.  Just been out to walk dog and pick up bread, fancied a sausage roll too so thought blow it they said eat when you can.  Don't think I could do the fasting thing through this.. are you?  I did ask at hospital about it and they were definitely against it but some swear it's great, I think you have to follow whatever feels right for you and gets you through.  I did meet as lady yesterday on cycle 4 (3 fec 3 T) and she said her first cycle was worst but then got easier, she looked well and was laughing so took that as a good sign.  She's doing chemo first then double Mx as her2 +.  So I assured that part was not too bad.  My best tips I've found so far are drink lots day before and during and after, keep snacks close by I keep nibbling just in case!  Probaby put on loads of weight but hey!   Get a good thermometer my cheap one is way out as got nurse to check so now awaiting delivery of an ear one.  

Big hugs Kip xx

[cdc1811]

Good to hear you’re feeling better Cazzy.
Kip, I’m glad you’re feeling ok so far. Does everyone get steroids to inject? I feel completely out of my depth despite doing plenty of research online- probably not such a good idea as I’m frightening myself!!! I appreciate people sharing their experiences. Hope you all get plenty of rest and have a good day today xxx

[Kip]

Morning, well survived day 1, no side effects to mention, slept pretty well 

,  Legs a bit achy?  Feeling ok this morning and have eaten breakfast which I can still taste as yet.  Taken steroids (nurse said to take them morning and noon to help sleeping) and first anti sickness done.  Gonna take things easy today and see what happens.  Hope you all are ok, Cassie glad to hear you feel bit better and Sally glad you're effect free still XX Kip

[SallyG63]

Morning,

Glad you are feeling better Cazzy. Luckily I still seem to be side effect free. Even the filgrastim injections are event free so far. Thankfully I've finished the course of steroids and have my normal 5.3 blood sugar today instead of the 15/16 s I've been getting. I can drop my insulin back to normal and hopefully avoid too much weight gain.

Have a good day all.

Sally

[cazzy50]

Morning all, Feeling a little more human now though I am having tummy troubles, even though I am not eating solids. Did manage a little yesterday. So now taking tabs to stop the diarrohea. I am injecting Filgrastim, two to go. Injection ok achy bones afterwards. Sometimes feels as though my hips are going to pop out. But as I am laying down all day not too bad. I did go to my surgery yesterday to see a nominated cancer Dr for me, lovely lady. She has given me tabs that dissolve under the tongue in case of sickness next time. The oncologist called they are going to inject me with an antisickness drug with all the other chemo drugs next time, will last for 5 days. Fun. Going to have a shower, still have hair. I was advised to buy rubber gloves for washing up, gardening, cleaning. But have not felt up to any of it. Hugs Cazzy X  

[SallyG63]

Dunno why I'm not having the F bit. Mine is mopping up what might have escaped the lymph nodes. My Ct and Bone scans were clear and with the mastectomy and follow up muscle shave they are happy they got good margins.

Once I got used to the cold cap I had a bit of a doze when I was in the cooling phase after the drug administration. It didn't even feel cold by then but the ice in my hair when they took it off proved it was. A few hot flushes and a seat in front of a sunny open window probably helped.