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August 2019 Chemo Starters

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Re: August 2019 Chemo Starters

Happy belated birthday Lisalou - glad you had a good celebration and that your hair was still around!  Here's hoping your next cycle goes well.  Thanks for the good wishes during my little diversion into hospital this week! xxx

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Re: August 2019 Chemo Starters

Hi Spottycotty

 

Sorry to hear that you have a sore arm - my vein was, and still is, sore from my first cycle - I am assuming it will improve over time, there is nothing to see in terms of inflammation but its very much there.  

 

Re your hair - I smiled when you said crap hair is better than none - I would agree with that!  I am not at first shedding point yet (day 13) but am being vigilant.  It is not at its best to be sure but I am prepared to keep going with it.  I didnt mind the cold cap first time, will be interested if its painful second time if I continue.  I am going to try on the wigs I ordered tomorrow so I will feel a bit safer when I know I have a fall back position if it does all fall out. xxxx

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Re: August 2019 Chemo Starters

Dear MJB

Thank you so much for your honest and very helpful message.  I agree with everything you say except I am sad that you feel angry and disappointed - I think to take the decision to stop is a very brave one and I commend you for being decisive and doing so.  

 

Sadly, I don't have the option of Letrozole so I have to consider my options slightly differently.  I won't make a snap decision - certainly when feeling so ill it seemed very clear to me that chemo was not the right thing but now I am feeling better that is not the case.  Having said that I still might decide to stop but I will have a good chat to my oncologist on Thursday and will be advised by him.  

 

I am sure that my next cycle will be delayed in order to make sure I am completely well before carrying on if I do which I am really upset about as it will mean that I won't finish before Christmas which was a bit of a goal.  Still I know its a safety thing and will do as advised.  The lack of control through all this is a real problem for me!

 

Thanks again for taking the time to be so supportive and to share your valuable experience.  All the best to you xxxxx

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl, I’m so sorry you had such a terrible time first round, sounds Like hell, it’s bad enough as it is! Sending my love and hope the docs can come up with a plan for you, so you at least feel like you have an option to continue or not. 

 

Spottycotty, I’m the same with cold cap, it was harder this time and my headaches afterwards were so intense and lasted days. I had my 2nd round of FEC80 on Thursday (day 25). No Hospital this time, I spoke to docs and they gave me Emend and patch prior to chemo so I had plenty anti sickness in my system. I was still sick and nauseous but nowhere near as bad. I am much more tired this time, does anyone know if it gets progressively harder to bounce back from after each treatment?

 

 My hair was thin to begin with and much thinner now...bloody horrendous, my heart just goes out to everyone losing their hair....I just feel mine will be out any day now and it’s so hard to face. It’s like the last part of a healthy normal you being taken. But suppose it Shows the treatment is doing what it should. My friend suggested shaving it but can’t do that yet! Think I’ll hang onto my last weak strand!

 

sending love to everyone, another day down is another day closer to finishing this! Thanks so much too to lovely ladies adding from other monthly threads, your experience and advice is invaluable xxx

MBJ
Member

Re: August 2019 Chemo Starters

Dear Wolvesgirl

I am mbj from February 19 thread. I too had neutropenic sepsis on my first round of FEC. Believe me I know how ill you have been feeling and how weak it leaves you. I was in hospital for five days. I had IV antibiotics and oral ones for two weeks after I came home. 

From reading your post I saw that you are unsure of whether to carry on with your chemo or not. I made the decision to stop chemo after my first round. I was not very fortunate in my oncologist as he was not particularly helpful. My BC is ER+ so I have been able to start taking the hormone medication Letrozole. I understand you are triple negative so don't have that option.

Looking back now to February my advice to you would be to take your time in making a decision and ask lots of questions about the benefits of the chemo to you and what do they plan to do to keep you safe next time. 

I am really not sure if I made the right decision, of course now six months later it is harder for me to remember how sick I was. I was and still am angry and disappointed in my body and my bravery that I could not face another round of chemo. 

Although we all have BC we are all unique and each one of us is making life changing decisions every day at a time when we are most vulnerable. I hope you have someone who will go to your oncologist with you, so that you can both ask questions and only then can you decide what will be the best way forward for you.

I hope you are feeling better and will be going home soon. 

Kind regards

Marie. 

Member

Re: August 2019 Chemo Starters

Hi everyone,

 

 Wolvesgirl, so sorry to hear of your rough time, I can totally relate to your feelings of not really wanting to carry on as that is how I felt on round one when I had to go in with nausea, nowhere near as bad as you!! I can remember thinking that there was no way I could manage another 5..,

Really hope you get a plan sorted with your Onc.

 

Im now on day 4 of 2nd AC.  Had a rough night again the first night, wretching every hour throughout the night but felt bit better by the morning, I’ve had fatigue earlier this time but I’d rather have that then feel sick all the time!

I’ve got a really painful hand and arm from where the chemo went in though, it was so painful at the time, the nurse was pushing it through so fast and it was freezing.. anyway, went in Friday and the dr had a look and said it was fine and to keep an eye on it, still painful today so if it hasn’t improved tomorrow I think I’ll ring again.   Anyone else had this??

 

My hair is still here (for the time being!!) I’ve cold capped both times, I’m day 26 from first treatment) it’s sheds so much st the slightest touch, I have no bald patches as yet but it’s very thin and lank, I can see me getting fed up of it if it doesn’t go by itself, but then I think crap hair is better than no hair??? Saying that, the cold cap was so painful the 2nd time round, I’m unsure at the minute if I can face it again!!!

 

Keep well everyone, chin up Wolvesgirl, you’re hopefully coming out the other side now 🤞🤞

Member

Re: August 2019 Chemo Starters

 

Hi Shi 

 

thank you for the birthday wishes 😊 it really has flown over and I certainly intend to make the most of this week until Friday. It’ll be another one ticked off and I suppose I can look at it as half way through the EC as I’m having that for 4 cycles. Then onto the 

Pacitaxel. 

 

Lisa xxx

 

Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

Belated happy 40th for yesterday lisaloo 😘😘glad you managed meal and your hair celebrated with you too 👍your 2nd one has Coe round quick now, enjoy this 3rd week, we always got excited getting to week 3 if that’s not too nuts but we were focused on ticking them off, I had postit note up in the kitchen ticking them off and every time I passed the bell in the unit, I’d sat to it, i’ll Be ringing you soon 💪💪💪big ❤️❤️To everyone 💕💕✨✨Shi xx

Member

Re: August 2019 Chemo Starters

 

 

Hi Ladies 

 

wolves girl.. sorry to hear your still in hospital like the other ladies have said it’s not an uncommon thing and hopefully they can get your chemo tweaked for you. I’m keeping my fingers crossed for you that you can get back home ASAP. 

Glad everyone seems to be doing relatively ok, everyone’s side effects are so different and all of us don’t know what the next day is going to bring, it really is a case of taking each day as it comes. My next EC is on Friday...it seems to have come around so quickly! It was my birthday yesterday (40 th 😫) and Iv enjoyed a weekend of eating seen as though I can’t drink! Meal out last night with the girls and Sunday dinner out today with my family.. my hair has stuck around for the occasion too although I’m expecting it to start shedding anytime now.. I’m on day 16 post EC and going off what you ladies have said it could start happening over the next few days. 

 

Big hugs to all.

Lisa xxx

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

It’s great to hear your update, and that you have been able to get out for a couple of hours today.  It sounds like you are making good progress, and hopefully your temperature will stay down and you will be able to get home tomorrow.  I will keep my fingers and everything else crossed that they let you escape very soon.

 

As far as the second EC cycle goes, I am now on Day 5 and feeling more or less OK (have just cleaned the whole house, done a load of laundry and also some gardening this afternoon).  I felt a bit more nauseous than in Cycle 1 on Days 2 and 3, but this has subsided and I am now back to eating normally.  I don’t have any tastebud changes this time round (so far), which is good.   I also don’t feel as tired this time as in Cycle 1, and in fact seemed to have quite a lot more energy today than I was expecting.  I don’t have any mouth, skin or nail symptoms either, so at the moment I can’t complain.  Who knows what tomorrow will bring, as I know that more side effects may kick in soon, but for the moment I am just taking things as they come.

 

I’m sure that your medical team will be working out a solution for you - they must be used to people getting infections, and having to adjust the treatment if necessary.  During my one night in hospital, I met several people who like you were on IV antibiotics for a few days.  One of them was discharged at the same time as me, and as we left the ward he said that he was going to resume his treatment as planned, having had a review with his oncologist about some adjustments to his regime.  So hopefully this will be possible for you too.

 

Take care, and let us know how it goes.

 

Blackcat xx

 

 

Member

Re: August 2019 Chemo Starters

Dear August starters,

 

Sorry I've not checked in for a while, and Wolvesgirl, really glad you're feeling better and hope you get home soon, and can have some good conversations with your oncologist on Thursday. I know what you mean about how feeling better makes you realise how bad you've been! I've not had any need for hospital so far and have been lucky with my bloods, but on EC seem to get a really blinking rough week (nausea - I'm taking EVERYTHING meds wise - diarrhoea, cramps big time fatigue, aching bones) followed by a week of feeling pretty normal (last week I managed to get back to work on day 11, and managed to lead 2 toddler storytelling classes which was really good for my mojo). I find on the good days I want to do everything possible before going in for the next dose which is probably not wise in terms of managing my energy (I'm on fortnightly EC so not getting much recovery time). I'm on day 3 post EC 3 today and not feeling too great - just managed a very slow stumble round the park after a hefty afternoon nap, and I think that's me all done for today. Just one more of these devils to go, then I'm switching to 12 lots of weekly pax which I'm hoping hoping will be gentler...

 

Saw some comments on wigs - I've had some success with fun cheaper wigs from annabelle's wigs and lush wigs - they're not as good quality as the NHS wig I was given, but not too pricey, but actually I've found myself wearing them more as somehow the pink/blue ones, being 'out there' fake look, strangely less 'wiggy' than my 'trying to be natural' brown NHS one (plus I guess this is the one chance to outlandishly wear the hair styles I've always secretly wanted!). Also getting skilled up with tying my own turbans and headscarves - if you're looking for turban tutorials and are on instagram the 'bravery co' do good quick videos on how to tie. 

 

I think it's 3 or 4 days on the sofa and watching Friends on netflix ahead for me now! Thankfully school and childminder routine starts this week (my little ones are 3 and 6) so I'm really looking forward to getting into some sort of a routine - chemo and kids on school holidays has NOT been the ideal mixture this month... Although not sure if I'm going to have any luck with actually being awake in time for the school run this week so going to need a bit more juggling to make this work somehow...

 

Becky x

Member

Re: August 2019 Chemo Starters

Dear all

 

Thank you for taking the time to send such positive thoughts to me over the last couple of days - I really do appreciate it.  I am still in hospital as although my bloods have improved I am still spiking temps at night which is annoying so still need IV antibiotics.  However so far today all good so fingers crossed it stays down and I can go home tomorrow.  I did have a couple of hours out today which was great and I am certainly much better than I was when I would not have made it to the end of the ward!  

 

I will check in as suggested with the June and Feb groups before I see the onco as planned on Thursday so again, many thanks. Perhaps changing the dose is an option - feeling better today has made me realise how awful I have been feeling. 

 

Many thanks again and my my best wishes to you all - looking forward to hearing how the second cycle folks have been getting on! xxxxx

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl..

 

im from the June chemo thread and just wanted to say that i am also Triple Negative...

we are limited with regards to our treatment and chemo seems to be our only option...

 

sorry you ended up in hospital,  at least i didnt have any infections or extra visits to a & e.

i did have acute reaction to Paclitaxel though after about 5 minutes.... horrendous lower back pain spasms but nurses n dr where incredible in getting it under control.

 

i finished my 12 Paclitaxel on friday the 23rd....  didnt think i was gonna make it to the end...had serious " wobble " around session 7 but i did... and so can you my lovely 💖

 

if you needany questions answered and i can help just ask..

i had 12 paclitaxel over 12 weeks and carboplatin every 3 weeks for 12 weeks.

tc.   Mini mad xx 💖💖

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl xx hope you’re starting to feel better 💕 I wrote you some words of advice on the February forum so pop over and say hi when you can xx

Member

Re: August 2019 Chemo Starters

Hi Julie ME

 

Susie from Feb 19 group again. I'm not stalking, honest😆😆😆. Regarding wigs I bought one on-line from Wigs4you. They have a brilliant choice of reasonably priced wigs and as you need one for medical reasons i.e chemo you can purchase one free of vat. There is a form to print off which you send to the company based in Ely, Norfolk, together with your order. When they have cleared the paperwork they will phone you for card payment details and post the order to you. They also do a fringe that you can attach to bandanas, hats, etc so if like me your fringe, if you have one, does disappear, your sorted. They also sell a starter pack of wig shampoo, styling spray, conditioner, brush, stand for storing/drying wigs. I also bought a wig through my hospital using a voucher. I cold capped and lost up to 60% of my hair but decided to wear a wig until I can dye my hair again as I have no desire to rock the grey look🦍🦍🦍🐱.  

Member

Re: August 2019 Chemo Starters

Hi Julie,

 

I’m sorry to hear that your hair is shedding, despite the cold capping.  I didn’t bother with the cold cap as I was told that my first two sessions (EC) would be very harsh on my hair, and that even with a cold cap, I only probably had about a 30% chance of keeping about 30% of my hair!  I did keep just about all of my hair until Day 18 after the first EC, and then it started coming out in handfuls.  I still do have a light wispy covering and am not totally bald all over, surprisingly enough, but certainly do need to wear a wig or a hat. 

 

I went to the wig fitter recommended by the hospital, and for whom they gave me a voucher.  I did this before my first chemo treatment because I didn’t know how quickly I would lose the hair.  I was able to try several wigs, was given lots of good advice, and took away my preferred wig on the same day.  Once I had got used to the first wig (which was slightly shorter than my own hair), I decided I also wanted to get a longer wig to wear as a change. This time I looked online because I felt I had enough information to make my own choice, and found an excellent range of wigs on the site “Simply Wigs”.  I asked them a question via email about cutting the fringe, and they responded immediately and were very helpful.  The also have videos with people wearing the wigs, and 360 degree images so you can see exactly how the wig looks when it comes out of the box.  I ordered a wig from them, plus some wig care products, and received it in a couple of days.  I am very pleased with it, and would highly recommend their service - although of course other companies are available and other people will no doubt have other suggestions.

 

Best of luck with whatever you decide to do!

 

Blackcat xx

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl.  Very sorry to hear of your setback - as someone with more experience than me posted, that's all it is and I feel sure your consultant and doctors will be able to adjust your chemo to suit you better.  Hopefully your body is now fighting back and you'll be back home very soon.

 

I had my second cycle on Thursday (T-CHP) which included Zoledronic Acid for the first time.  I'm sure it was that which caused me to feel like I had flu yesterday... could hardly get out of bed all day, but managed to be up and around in the evening and I'm feeling better today.  Waiting for all the other side-effects to kick in now, if last time is anything to go by - so I'm planning to take it as easy as possible for the next 6 days or so.  It does feel like an uphill battle, but we all know we have to go through the 'pain' to get the gain in the end.  I have cold-capped both times so far - although not all of my hair has come out (yet) I do get handfuls every time I touch it.  Ah well, it was probably worth a try but I didn't buy a wig, although do have a few turbans for emergencies.  Did any of you just buy wigs off the internet, or did you go to specialist chemo wig makers?  My hospital gave me the card of someone they recommend, but it seems quite a faff if I want to get one quickly.  Any thoughts / advice would be very helpful please.

 

Thanks all, and very best wishes Wolvesgirl.

 

Julie xx

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl

 

Sorry to hear that you have been admitted to hospital. I've noticed a couple of people have replied to you already but if you want to hear how others have coped with being neutropenic or had viral infections then please pop into our Feb 19 group. As I've mentioned before we're a large chatty group and I'm sure the girls will be only too happy to relate their experiences. Being TN doesn't offer the best variety of options but does respond exceptionally well to chemo. As already mentioned a reduction of dosage may be all that is required and your onco will discuss this with you. Get well soon.

Susie B ❤❤❤ 

PS. I'm also TN along with another lady in our group.

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

So sorry to hear that you are in hospital - I had been wondering how you were doing.  It is bad luck to have developed a viral infection, but you are in the right place and it sounds as if you are being well cared for in the oncology unit.   I felt the same when I had my overnight stay in the oncology ward two weeks ago.   I will keep my fingers crossed that your neutrophils get back up above 1 as soon as possible, and that your temperature stays down so that you will get home to the Shropshire hills very soon.

 

Hopefully your consultant will be able to guide you about what the best way forward is.  I guess that any of us can develop a viral infection during chemo, and that it does not necessarily mean that your body cannot cope.  I have met people in our chemo treatment room who have had a similar infection and hospital stay early in their treatment, but still were able to go on to have more sessions of chemo (some had an adjusted dose, or a tweak to their regime).  I’m sure that your team will be able to offer you a solution, or different options, that will work for you.  

 

Take care of yourself, and do let us know how you are doing when you are able.   You could definitely have done without this bump in the road, but you will get through this very soon and you will be OK.   We are all here cheering you on.

 

Blackcat xxx

 

 

Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

Wolvesgirl 👭👭😘😘sorry you’ve ended up in casa nhs on 1st lap 😘😘same happened to me. Firstly very well done you on keeping vigilant and getting yourself to hospital and kept safe 💪💪I was 😳same as you, but spoken to my onc and had a reduced dose for remainder of chemos. Remember your full whack is tailored just for you, so a reduced dose could be someone else’s full whack. A lady tipped me off about life Mel honey when I had my casa nhs stint and I don’t know if it was that or reduced dose or combination of both but did remaining 5 and no more casa nhs stays 💪 if you google Bristol stool chart cakes you’ll see all the cakes that people have made to resemble the Bristol stool chart 😂🤣😂🤣😂 I know it sounds bonkers but it gave me a 😁after being in casa nhs for a while 👭👭we are here ❤️❤️💕💕✨✨Shi xx

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Re: August 2019 Chemo Starters

Dearest fellow August 2019ers

Sorry I have been a bit quiet this week - I will post more fully in due course but to cut a long story short I have been in hospital since Monday evening with a ?viral infection that combined with the chemo has taken me off my feet. I was a bit better today and my temp was settling so I nearly made it out of the door but now am neutropenic so couldn’t leave after all - IV antibiotics back up and have to have neutrophils over 1 plus no temp for 48 hours before I can escape. I know I am in the right place but I so wanted to get home today 😒😒😒

 

Positives - the helpline system worked very well, out lovely Trust which is much maligned were, and continue to be, magnificent, given ED was rammed and ambulances were queuing off site (which as an ex manager I noted)!! I only spent one night in an acute admissions area before getting a bed on oncology where I feel safe and cared for. 

 

Negatives - I am becoming increasingly sure that chemo is not for me despite it being the only option as I am TN. Its a decision I need to discuss with my consultant of course but they can’t rule out this happening again!  I think my body is telling me that it cannot deal with it despite how robust I think it is.

 

So pleased you have been celebrating birthdays (with or without hair) Lisalou and that second cycles are going well Blackcat. Keep posting as it’s good to hear from you all whilst I gaze longingly at the Shropshire Hills! Xxx

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Re: August 2019 Chemo Starters

Hi Lisa (and everyone on the thread),

 

I hope that you had a great birthday, and it’s good to hear that you have kept your hair!  Mine suddenly decided to depart last weekend (it came out in big handfuls just before I had planned to have a head shave), so I have now had to get used to my wig, plus a variety of hats.  The first day I wore my wig outside it was 33 degrees, which was not the best day to road-test it as it kept slipping around with the heat!

 

My second EC on Wednesday went OK, and was really quick (the nurse pushed in the 5 syringes of the dreaded red E in about 15 minutes, and then the C and final flush only took about 30 minutes).  I was sitting next to a lady having a 10-hour infusion for bowel cancer, so felt very lucky to be in and out so fast.  I had a slight headache afterwards which lasted only an hour, and now the only side effect I have is a bit of a nauseous/churning feeling in the stomach which comes and goes.  I forgot to put on my acupressure wrist bands overnight and woke up feeling quite queasy this morning, but as soon as I put them on the queasiness reduced.  I don’t know how they work, but as long as they are helping, I am not going to question it.   I am not taking any medication for the nausea other than the post-treatment steroids (although I have two boxes of different tablets which my unit has given me on standby), but am hoping to manage with the wrist bands plus some natural remedies (peppermint tea and eating dry oat biscuits with ginger pieces in them seem to work quite well for me). 

 

I hope that everyone on the thread is having a good day.  I gather that there has been a technical problem on the forum website since Wednesday (I emailed the admin team because I couldn’t log in), but that this has now been resolved, so hopefully more of our little gang can check in soon and we can catch up with how everyone is doing.

 

Blackcat xx

 

 

Member

Re: August 2019 Chemo Starters

 

 

Hi blackcat

 

Thankyou for the birthday wishes.. still clinging onto my hair... for now! Hope your second EC treatment went ok and your not feeling to bad from it. 

Hope everyone’s feeling ok. 

 

Lisa xxx

Member

Re: August 2019 Chemo Starters

Hi Lisa,

 

Great to hear that you are feeling back to normal, and I hope that your hair will make it through to your birthday!  I think that there is a good chance that it will - mine only really started shedding in a noticeable way on Day 18.  It did, however, fall out quite quickly after that, and by today (Day 20) it is almost completely gone.   I had been planning to have a head shave tomorrow at our Cancer Care Centre, but there is nothing left to shave off.  I have been trying out my two wigs today, and in a way it is a relief not to have to worry about the hair falling out (I know the feeling about checking the pillow).  

 

I hope that you are enjoying the sunshine, and that you will have a lovely birthday.   I am off to the hospital for blood tests tomorrow morning before EC treatment 2 on Wednesday, so am just beginning the whole cycle again.

 

Blackcat xx

 

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

So sorry to hear that some side effects have kicked in after Day 3.  I’m pretty sure that this is just a blip, as quite of few of us had a downturn after the steroids finished, and felt more nauseous/miserable/wiped out than in the first few days.  My worst days were Days 5 and 6, but from Day 7 onwards things got better and I was able to eat properly again.  I am not having the injections, so for me the only difference was the steroids ending (or maybe it’s just the way the drugs work - perhaps we just get a dip after a few days as our bodies absorb them).  Don’t be disappointed - you are doing really well, particularly as we can’t control the way we react to these potent chemicals across the treatment process. You have got this, and hopefully you will feel much better soon as you move into the next few days of the treatment cycle.

 

Blackcat xx

 

Member

Re: August 2019 Chemo Starters

 

 

Hi Ladies.

 

Sorry to hear you haven’t felt very well Wolvesgirl. Hopefully it is just a blip and you’ll be feeling well again soon. Spottycotty sorry to hear the hair has now started to shed. I’m now 10 days post and I’m already checking my pillow as soon as I wake up I’m that paranoid about it. It’s one of those things that we know is going to happen but we just want to cling onto it for as long as possible. Plus it’s my birthday this weekend and I’d really still like to have my own hair for then! 😆 anyway... if not Iv a wig at the ready. Apart from worrying about the hair loss I feel pretty much back to myself 🤞🏽 Hope everyone’s having nice bank holiday Monday. 

 

Lisa xxx

Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

Wolvesgirl ❤️You have got this 💪💪it’s just settling into routine with it. Your team should tweak your antisickness meds till they hit right combination, I was akynzeo and metochlopromide and no problems. As for sleeping, don’t worry about that, you’ll be up all hours, peeing all hours because of fluids and then catching up on zzzz at all hours, it’s just about listening to your body and doing what it wants ❤️❤️ Time for a bit of eye of the tiger by survivor on chemo jukebox for you 💪💪💪 I know you can 🥊🥊🥊through 💪💪💪💕💕✨✨Shi xx

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Re: August 2019 Chemo Starters

Wolvesgirl, it definitely is a blip, keep going, i was a lot better by day 6 and head cleared as soon as I’d stopped meds and injections. 

I kept a diary of how I felt so i can focus on it next round, it’s awful not knowing if you’ll get yourself back but you will and you HAVE got this 💪 

Member

Re: August 2019 Chemo Starters

Hi everyone

 

So glad to hear that you are all doing well despite the hair loss Spottycotty - maybe it was the rollercoaster!  Sadly, I have taken a couple of backward steps - days 1-3 absolutely fine, the last two have felt really rotten - very sick, bit fuzzy and sleeping badly which has made it worse.  I phoned the helpline this morning who advised restarting the Ondansetron which I was pleased with as the other antiemetic (Maxolon) has been useless.  Am keeping going with the fluids and eating bits and bobs so hopefully this is a blip.  I wondered if it was the injections but the helpline didnt sound that interested in them.  Really disappointed - I thought I had got this!  

 

Good luck to all who are about to start cycle two - that time seems to have gone quickly! xxx

Member

Re: August 2019 Chemo Starters

Morning....spoke to soon, hair shedding 😆

and then, because I probably murdered a frog in another life and need to be punished, I started my period 👍🙄😆

Never mind, can’t tell just yet so I’m off to a bbq with my grilled salmon 😎

Member

Re: August 2019 Chemo Starters

Hi Spottycotty (and everyone),

 

Good to hear that you enjoyed the rollercoasters without feeling sick, and also without any unexpected hair loss!   I definitely couldn’t have risked going on a rollercoaster over the past few days, as my hair started coming out in handfuls on Friday and today (Day 19) has just about all dropped out.  I was planning to have a headshave at our Cancer Care Centre on Tuesday, but there will be nothing left to shave by then!  I tried out one of my two wigs today for the first time - not the best day to have to do this as it was so hot - and it was OK, so I will venture out of the house with it tomorrow and see how that goes.   Other than the hair loss, I have had a good past few days and have been feeling completely normal.  

 

My next EC chemo is on Wednesday too, so I am also counting down (I have to get bloods done at the hospital on Tuesday).  After a week of feeling full of energy, I am not looking forward to being at the mercy of the side effects again, but on the other hand it will be good to get the second treatment completed.  

 

All the very best for Wednesday, and good luck too to everyone else who is having a treatment in the next few days.  I hope that everyone will also enjoy the Bank Holiday tomorrow!

 

Blackcat xx

 

 

 

Member

Re: August 2019 Chemo Starters

Hi everyone, 

 

Just checking in, hope everyone is enjoying the bank holiday weather 😎

 

Not much to say really, we went to a theme park Friday and I managed all the rollercoasters without feeling sick 😁 Also, I was slightly worried that my hair might just blow off but fortunately that didn’t happen 🤣

Im now 19 days past 1st chemo so I’ve been expecting the shedding to start from last week really.  I have woken up in the night to check my pillow so it really is on my mind!!

Anyway, everyday is a bonus isn’t it!

 

hope everyone is ok, countdown for number 2 on Wednesday xxxx

Member

Re: August 2019 Chemo Starters

Thanks very much BOD.  It was great to hear from you, as it sounds as if we're having similar treatments.  My drugs are Ontruzant, Herceptin and 2 types of Zoledronic acid.  I'm seeing the chemo consultant on Wednesday and will ask if she could explain a little more - I'm down for 18 cycles in total, which seems an awful lot, but it's "only" 6 cycles of the chemo.  I haven't had the Zoledronic acid yet as needed to get sign-off from a dentist before they start me on that.  So I go back for the second chemo next Thursday, and assume will be given the Zoledronic acid then.

 

I'm also on steroids the day before, the day of, and the day after treatment.  Then I get a couple of days off and back on steroids for 2 days.  I agree, although my face swelled up on the steroids I did feel much better when taking them.  Then I have to self-inject the drug to help white blood cells for 7 days - not nice, but has to be done!

 

I found Day 10 to be when I started to feel better as well - more energy, less nausea.  And, as you say, diet seems to make a big difference (although I'm either constipated on running to the loo - no happy medium).  It really makes you appreciate how your body copes normally doesn't it?  The hospital are going to change one of my anti-nausea drugs for the next cycle, as I did feel very rough when I ran out of one of the two I was taking (so I think only one was working).

 

I'm pleased to hear you're half way through - I'm looking forward to getting there so that I can start to feel I'm on the downward path!  I hope the rest of your treatment goes well and we can all leave this behind us before too long.  With best wishes, Julie

Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

😁wolves girl 👍keep fluids flowing keep taking temp, start watching out for oral thrush, burning pee even with no temp days 7-14 are you nadir days so even with no temp if anything doesn’t feel right phone your unit. Epsom salt baths everyone to deal with bone pain from jabs/t chemo 👍👍it really helps and was a tip passed onto us from May17 thread that looked after us oct17 thread 😘also is your skin drys out and no moisturiser can work get udderly smooth with extra urea from Amazon 👍👍it’s sublime and again another invaluable tip passed to us ❤️❤️💕💕✨✨Shi xx

Member

Re: August 2019 Chemo Starters

Thanks both 

 

So far so good - day 3 today so will be starting the dreaded injections so bit worried about the back pain that may occur. Still, has to be done.  But generally pleasantly surprised that I feel like this - I know the first cycle is the easiest! 

 

I have spent the morning picking plums off our small but prolific tree ready to make into plum gin - should be ready for Christmas!  Now sitting in the shade loving this weather whilst listening to my husband mow the churchyard!

 

Hope you and everyone else are ok and enjoying the sun. Xxxx

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

So glad the treatment went well for you yesterday, and that the cold cap was OK too.  I hope that the nausea and flu-like symptoms will subside very soon.  I think that most of us have had these types of symptoms in the first day or so after the treatment, but then things have got better.  If you find that you are still feeling nauseous as time goes on, it is worth telling your medical team, as they will have a range of medications to help.  My chemo nurse said that they give us the most basic drug to start with as it is all that many people need, but that they can offer other (more expensive) anti-nausea drugs if the first one doesn’t work. 

 

I hope that you will have a good night’s sleep tonight, and that you will enjoy the weekend in the sun!

 

Blackcat xx

 

 

Member

Re: August 2019 Chemo Starters

 

 

Hi wolvesgirl 

 

So glad your first one is out the way for you! And your not struggling too much with side effects.. hope that continues for you through the week. I’m 1 week post now and feeling pretty much back to myself.. met a friend for coffee and cake this afternoon and now sat in the garden reading a book enjoying this lovely weather. Hope your still feeling ok and enjoy the weekend as much as you can. 

 

Lisa xxx

Member

Re: August 2019 Chemo Starters

Morning everyone

Thanks again for all your good wishes before yesterday and Monty, I am looking forward to waking up one day next week feeling bouncy!  Yesterday, as you all predicted, went well.  The unit were amazing - so kind and intuitive - the cold cap was actually not bad at all, I certainly would not say it was painful.  The worst thing is its like talking with a pair of earplugs in so I was worried I was shouting!  A really good friend (one of the two I have told) works at the hospital and popped down and took the mickey out of me which helped.

 

The side effects (so far) are manageable - low level nausea is the worst thing at the moment but I am taking everything I have been given and its a bit better today than it was last night.  I woke up hot in the night but that could just be because the room was warm - my temp is normal this morning.  I would describe how I feel as recovering from flu if any of you have experienced that!  Here's hoping that this is the worst I will feel and that every day it will improve.  

 

I hope you are all continuing to do well on the different places on the pathway you are all on - I must admit, during the night I thought it was pretty daunting to consider another five cycles of feeling like that but I tell myself it is worth it!   Have a lovely weekend - the forecast is great for us all I think.  xxxxxx

Member

Re: August 2019 Chemo Starters

 

Hi JulieME

My original diagnosis was a mirror image of yours. I also am Her2+. I am currently halfway through my pre surgery treaty of  Herceptin, Perjeta, Taxotere and Carboplatin. 

I have steroids the day before treatment for 3 days. I have loads of energy then when I finish the steroids I go very flat and tired. I  manage to go walking everyday as that does lift my tiredness briefly. I have 5 days of injections to target white blood cells. Then on about day 10 I start getting more energy back. My body’s fighting back. 

Also my motions vary between constipation and diarrhoea so I try to manage that through diet ( not always successfully). Lots of vegetables, chicken and fish.

Yesterday following a family get together where I ate beef burgers. chips etc and very little veg I spent a great deal of the night with the trots. Back to simple fair for me. Also the day before chemo I try to keep my food intake light as previous threads have indicated that an empty tummy helps stop the sickness. 

Look at the targeted therapy threads.

Good luck. message me if you want to ask anything else BOD

Member

Re: August 2019 Chemo Starters

Good Morning,

 

Its a gorgeous morning here in Essex.  I'm not sure where you are all from but hope you have the same glorious weather.

It's really good to hear that the majority of  everyone here this month seem to be doing well.  I started the first of my FEC sessions last Wednesday and feel that I have been so fortunate to have not had many side affects at all. Yesterday I woke up with a real bounce for life and the same today.  I haven't felt this jolly since before diagnosis and surgery in May. It's most Bizarre..  So, I thought I would come back in to the chat room and share the journey with all of you rather than hide behind the front door and lock the world away which I was doing before.

I am also trying the cold cap, so far so good.  I usually wash and blow dry my hair everyday so doing it every few days is a little odd for me.  I had my hair cut form shoulder length hair to a short bob the day before Chemo and when I dry my hair now, I do it at a distance and use the cool/cold setting. 

I read earlier in the Forum that someone was asking for advise on the PICC line covers.  I also ordered some on line and felt they were either too tight or short or loose.  So, I got creative... I ordered some Opaque white Knee high stockings and cut the end off then double folded it.  So smooth and stretchy and stay in place.  Food for thought..  

I was also struggling with the constipation so I spoke to the district nurse, she advised Laxido.. A laxative that finally worked after 5 days  I honestly would recommend this if you can ask you doctor / consultant for a prescription. 

Well, that's my morning blog, now off to do some washing, then open that door to the big lively world and face the supermarket (handbag loaded with Antibacterial gel)

Hope you all have a good day.

Wolvesgirl, wishing you the best for today, you have got this!

 

Monty x 

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

The very best of luck for tomorrow - I’m sure you will be fine.  I’m glad you enjoyed your residential weekend in York, and am interested to hear that you are doing a distance learning degree at the university.  I know it well, as I was a lecturer there for many years before making a career change into the charity sector.  You are right about the hen parties - they seem to be everywhere in our city centre at the moment!   

 

We will all be rooting for you tomorrow, and looking forward to hearing how you got on.  

 

Blackcat xx

 

 

Member

Re: August 2019 Chemo Starters

Hi Em39

thanks so much for the very supportive message - glad to hear you are feeling so well. Great news about the hair - hope that the next cycle goes as well. Must admit, in a weird way I am quite looking forward to trying the wigs!  Xxx

 

Member

Re: August 2019 Chemo Starters

Good luck Wolvesgirl, you will be great!!

 

I'm due my next FEC treatment one week tomorrow (on day 13 now)....I cold capped, have a few hairs coming out (a wee clump when I washed on Saturday) but nothing horrendous yet! Got my wig today, its so much nicer than my real hair - so it's ready if and when I need it.  I felt good having it, bit of a weight off my mind as like you lovely ladies, I'm totally paranoid every morning I'll wake up and its all fallen out.

 

Also feeling really quite well....doing lots of usual things (cleaning, running after kids etc.,) and at or around 10,000 steps each day - even ran this mrn with kids to catch school bus lol!!

 

Take care everyone xxx

Member

Re: August 2019 Chemo Starters

Hi Jencat, 

 

Many thanks xx

Member

Re: August 2019 Chemo Starters

I hope chemo goes ok for you tomorrow Wolvesgirl x

Member

Re: August 2019 Chemo Starters

Hi everyone

 

Thanks so much for the messages of support for tomorrow - I really appreciate it.  I am so pleased that everyone seems to be feeling as ok as can be expected given where they are in the cycle and are getting on with life. Particularly good to hear that week three is pretty much normal.  I am hopeful to make it to the gym in week three of each cycle even if its just to do some gentle exercise - its seeing everyone that will be nice.  I did my usual double hit today which was great but accept that might not be a good option for a while.

 

I went for the pre admission thing this morning - it was actually good with a film made by the unit which was informative and then a 1:1 with a lovely staff nurse who was great.  I am feeling OK about it at the moment - I have been given some antiemetic to take tomorrow before I go in and then will get all the other medication that you will all know about.  I am drinking two litres of water a day - bit of a shock for my kidneys which haven't had to work so hard for years!  

 

Spottycotty - I am cold capping too so will be interested in comparing notes in hair loss.  I am a bit worried as I have not been back to the supplier to try on the wigs I ordered - I am going to ring again on Tuesday and even if they have not all arrived (only three have) I think I will go in as I don't want to be caught without one if the worst happens.  

 

Blackcat - how lovely to live in York - I visited there at the end of July as I am doing a distance learning Post Grad Diploma (hopefully to become a Masters) at the university and we had our residential weekend.  It is a lovely place despite the hen parties (!).  I am in Shropshire near Shrewsbury.  

 

Lisaloo - glad you are getting those bowels sorted - it is incredibly debilitating to be constipated!  Not entirely sure I will have that problem!! Slightly too much information from me probably.

 

SB1610 - thanks for the suggestion re the pillow - I am so committed to keeping my hair, I am buying everything people suggest. 

 

All - thanks again for the good wishes - will let you know how it goes. xxxxx

 

Member

Re: August 2019 Chemo Starters

Hello all

You all seem to be doing incredibly well.

Just wanted to share another few tips with you. A silk pillowcase is useful as it won't pull on your hair - you'll just glide over it. I got mine from Debenhams as a gift from friends but at £50 it was eye wateringly expensive - Amazon has cheaper options.

Also think about investing in some soft cotton sleep caps - again Amazon has loads of different colours. As I lost my hair my head got really cold so I need to have something on my head whilst I slept- it will also capture hairs whilst you are sleeping so you won't wake-up to a bed full of hair which can be upsetting. For those of you cold capping it will also help prevent pull on your hair especially when combined with a silk pillowcase.

 

Good luck all - thinking of you

Sue xx

Member

Re: August 2019 Chemo Starters

Blackcat...mine 2nd is next Wednesday too,  I’m  also not too far from you as I’m in Hull 😊

Member

Re: August 2019 Chemo Starters

 

 

Morning ladies 

 

I’m 5 days post EC now and still feeling relatively ok. No more sickness since first night. Just feeling very tired and a little spaced out at times so resting when I feel I need to. I Got some fibrogel and having bran flakes for brekki in hope to sort my constipation out 😆 there’s been a bit of movement so hopefully getting there 😂🙈 I’m not far away from you Blackcat just an hour up the road in Darlington. Wolvesgirl good luck for tomorrow, I’ll be thinking of you. Please let us know how you get on. 

Big hugs xxx

Member

Re: August 2019 Chemo Starters

Morning everyone,

 

It’s a lovely sunny day here (York), and I hope that it’s the same where you all are.  Like Spottycotty, I’m in the better part of the treatment cycle now, and feeling well.  For the last couple of days I have actually had quite a lot of energy, and am back to cooking and eating normally as all the strange tastebud changes have gone.  My second EC treatment is a week today, so I am making the most of these few days of freedom before it all starts again.  My hair is hanging on in there - I am losing a few hairs every day, but no major fallout yet (Day 15), although I am sure it is imminent. 

 

Good luck Wolvesgirl for tomorrow - we will be thinking of you and cheering you on.  I hope everyone has a good day today.

 

Blackcat xx