June 2021 Chemo Starters

[Trowster]

Louise, so sorry you have a rough patch, but glad they got you moved to the right hospital, and it’s fantastic news about the genes for your family, 

i seem to feel rough for about 5 days then weak n tired for the next 4 days, I have some breathlessness and dizzy spells, but after day 10 I feel so much better, my next session is this Friday and I booked on a Breeze Ride today and thought I would just go half way n get the hubby to pick me up, but I felt really good today n managed 29.5 miles, it’s works wonders for my mental health n I feel like I’m back in control, now time for a nice shower n PJs hubby has gone to work away till Friday so I can just chillax, glad some of you had an extra of feel good of  n hope all goes ok for you tomorrow, take care all, we’re all getting closer to the next stages, we’ve done good, xx

[Louise65]

@BabyBunting my radiotherapy will be every day for 10 days which is going to be hard going as it a 45 min drive each way so i will have to take my self for most of the sessions.  As for work i know the law changed in 2010 so that we are protected. Your work place has to work with you and support you they cannot treat you unfairly in any way. x

@GonnaGetThruThis I had my surgery first then 3 x EC, 9 PC( however i only found out on first session that the PC is done 1st week of the 3 week session then other 2 weeks its just one drug. 

Glad you had a productive day i feel so good when i get a day like that.

xxx

[GonnaGetThruThis]

@Louise65at my last appointment with my Consultant (which was just before my last EC) she mentioned the possibility of adding carboplatin to Pacliataxel (subject to the genetic testing) but made a point of saying that it has high toxicity and as EC was working so well for me then it would be pointless to add it in when there is still some debate over its effectiveness in addition to the base drug (so in my case P).  So i would definitely ask about reducing it for sure. 

I was supposed to be having my next oncology app next week which would have been after 3 x EC and 3 x weekly P but it has been cancelled as she wont be back from holiday (maybe she has to quaratine lol).  Annoying as I wanted to ask about surgery options and radiotherapy as i assume ill be having it but it was never really mentioned.  Still a way off I know but now im on the next step i want to know what comes next.  i am a planner so even though i know things can change i want to have an idea when things will happen.  Eg so assuming i get through all 12x weekly P without a break, that takes me to first week of November,  then i assume there is a break to recover before surgery, then surgery then a break to recover again etc....  i just want to have an idea of when things will happen.  Like you louise i also wanted this to 'be over' by Christmas but didnt realise that there would be about a month long break/rest/recovery period after the last chemo and before surgery and then again after surgery and before radio starts. 

Is this what others who have had surgery have experienced?

I've made the most of having an extra day off (Monday is treatment day so normally i would be there now) and ive cleaned the house, cleaned the fish tank, done a bit of work admin and now im going to chill!

Kim x

[BabyBunting]

That’s frustrating about the radio. How many sessions?

[BabyBunting]

Yes, work may prove too difficult. Tricky as I only started in Feb, but they’re very supportive. 

[BabyBunting]

Thanks. That’s great to know!

[Louise65]

@Mum2boys @GonnaGetThruThis @Fairie 

Hi all I'm feeling much better thanks was tired yesterday as did lot of walking Saturday and uts hard going now as hospital stopped my naproxen which I need for my osteoarthritis in knee. Going to have to speak with gp as cant cope without it as won't have knee replacement now for at least a year it's just to brutal and after this year I need a break.

Spoke with consultant Friday.he thinks it the carboplatin so is reducing dose and will see what happens, I restart Friday. I did ask him about my radiotherapy and was told will be mid December before I have it and it will go on into January so that depressed me as was hoping for it to be done by xmas. 

@BabyBunting I've been off work since June I did hope to work on my good weeks from home but sadly there's just no way I could my concentration is awful now. 

I also did the look good feel good session although I didn't practice as I cant see without glasses I did get a couple of tips so was worth it.

Hope everyone keeping well. 

Love Louise xx

[BabyBunting]

*yuck

[BabyBunting]

hi. Yes I had EC. It was you know for about a week then just tired. This is worse but hopefully not for too long! 

[Mum2boys]

@Louise65 I'm so sorry that you've had such a rough time lately. Hope you have been able to enjoy the weekend. 

@BabyBunting I start my Docetaxel on Wednesday. I'm dreading it tbh. But interesting that you've had nausea as they told me that nausea wasn't as bad as EC! Oh no! They did tell me that I'll be more prone to infection on Docetaxel which is a pain as I had an infection on 2 out of 3 of the EC chemo rounds! I really hope you start to feel better soon. It's hard when it stops you doing things you usually do. I try and remember it's just temporary and to take one day at a time. Did you have EC before this? My side effects usually lasted about 7 - 10 days on EC. Thinking of you. 

Hope you all have a good day xxx

[hopeful1974]

@BabyBunting Hi there. I have Docetaxel plus Carboplatin. I do get the nausea and fatigue for the first week but then weeks two and three I feel pretty much fine. I hope you turn a corner soon and start feeling much better. It takes me until day 9 or so to feel like I am more normal again. I haven’t gone back to work yet and think I would find it hard although feel I could manage a couple of hours a day possibly on weeks two and three. Siân 

[BabyBunting]

Hi June starters. Has anyone changed to docetaxel yet? I started mine on Tuesday. OMG. Nausea, fatigue, poisoned etc. I’m feeling a bit miserable about it coz I was hoping to be back at work next week after 4 weeks leave. Dream on. It’s pretty yuck but I’m hoping it won’t last too king. I’m on day 6 now. Any thoughts? 

[GonnaGetThruThis]

@Louise65I certainly hope that you are on the road to recovery now they know whats wrong.  What a scary time for you and your family.  As frustrating as it must be to delay treatment it will be for the best.
Have they mentioned about a PICC line for you if your veins are also struggling?
Also yay for the genetic screening results.  Have to say i was also very happy when mine came back negative, and the same as you, not so much for myself as we are already on this journey, but for my daughter and my sister.

I'm having a bit of joint and muscle pain, mainly lower back and legs/knees.  It started Thursday night after my massage and I put it down to that but apparently its a side effect.  Now im not sure if it was made worse by the massage or if it was jsut a coincidence in the timing.

Normally about now I would be getting prepared (more so mentally than practically) for my Monday treatment but being the bank holiday tomorrow it will be Tuesday so I have another day.    My nurse said to me last week when she was making the appointment that it would be busy as they would have to get all the Monday and Tuesday people done.

Must say it was weird at the start of last week not having any at home meds to take.  They didn't give any steroids or the G-CSF injections to take home.  I asked, especially about the latter, and was told that Pacliataxel doesnt usually lower the white blood cells as much as the EC treatment, so dont typically give it, although the would keep an eye on the levels via the weekly blood tests.  Did others find the same when switching to weekly treatments?

Enjoy the rest of the bank holiday weekend everyone.

Kim x

[Fairie]

Dear @Louise65 

what a exhausting and worrying time you’ve had. I hope you continue to recover and feel much better soonest.

so glad for you about not having the gene. 
Enjoy your ice cream tonight!

sending feel much better wishes...

Fairie (Sharon) xxx

[hopeful1974]

Dear @Louise65 I’m so sorry to hear you had to have that hospital stay, but very glad to hear you’re feeling much better again now and that they got to the bottom of the problem. I am really pleased to hear you do not have the gene. I have been told that I am not eligible for the genetic testing as I am not aware of any family history of breast or ovarian cancer so I am thinking of paying to have it done myself. I really want to know for my daughter and sister. 

We are in Wales for a few days now and the weather looks good, so I am determined to enjoy it while I am feeling good before chemo next week. 

Love to you Louise and to everyone else. Siân xxx

[Louise65]

Hi Ladies

Hope everyone is doing OK.

Last Sunday I called oncology as was concerned about my breathing and not feeling 100% was told get to a&e. Arrived at my local one 11.30 and 3pm told ambulance taking me to Lincoln there was a bed waiting on oncology I got in the ward at 9pm exhausted. Hooked up on drips and taking low dose antibiotics my kidney function wasn't good and one of my bloods had dipped. Turns out I had acute kidney injury and lower tract infection. I was allowed home last night still on meds and now having to increase fluids plus have my bloods checked every 2 weeks. I'm feeling so much my old self at last.

Tomorrow is postponed until next week good job as couldn't use my hand its so sore from the canula and fluids going through. I also have a video app with my consultant tomorrow which is good. 

Some good news I've had today my genetic screening is back and I'm not carrying the faulty gene. The relief is huge not for me as I was prepared but for my family so tnte I'm celebrating with a tub of posh icecream lol.

Love to all

Louise xxx

[Flower123]

@GonnaGetThruThis 

Thank you so much for your reply it is very much appreciated.

I have ordered both products from your link .

Hope you are doing well .

Jennifer xx

[GonnaGetThruThis]

Jennifer @Flower123 I have the picc line and honestly it is great.   The procedure to put it in is so quick about 30 mins, I didnt feel a thing when it was going in and after a couple of days you get used to it.  it is also in a good position on the inside/upper part of the arm so it isnt in the way and you can sleep on your side etc.  It makes it so much easier when they are taking blood and putting in the chemo, you dont feel a thing.  When i was on the 3 weekly cycle they would change the picc line dressing on treatment day and then once in the middle but now im on weekly they do it before each treatment.  I'll attach a picture to show you up close and whilst it looks a bit bulky, it really is only the end bit sticking out.  At home I just walk around with it exposed but when going out i use the cover from the hospital or the nicer one i bought from amazon.

Only down side is that you cant get it wet so need to get a waterproof protector for showering and of course you can go swimming, which i do really miss, but overall the advantages far outweigh these downsides.

These are what i have bought.

https://www.amazon.co.uk/gp/product/B085N2F9B6/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

https://www.amazon.co.uk/gp/product/B07G146NR1/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

[Flower123]

Good morning Everyone,

I have been reading all your  post and glad most of you are doing very well . Hopefully any problems for other will be sorted very quickly.

@simplyeveGreat  big Congratulations , something lovely to look forward to x

I have been doing well on cycle 3 but last Wednesday  had bad cold / cough which turned into a high temp and hospital visit with iv antibiotics then antibiotics to bring home . Had oncology yesterday as chemo is Friday. Have been told to leave next chemo  1st Docetaxel till next Friday to get rid of chest infection. I was very upset at the time as just want to move forward and get it done but understand it is for the best .

I have been have a very painful right arm all up the side and such protruding veins . It is the chemo arm they use as have had lymph node out on left .Consultant has said best to have pic line put in as only going to get more painful as chemo goes . He gave cream to help aswell . Having pic line put in this frid anyone else got one ? Is it painful to be put in ? 
On a positive side I did the LGFG course last night really enjoyed it . Nice to see other ladies and chat . Have booked on mail on mid September. Forgot who asked were about a in the Cotswold.. It is a lovely town called Cirencester which I have live all my life.

Hope you lovely ladies have a good day the sun is shining again which is good .

Love Jennifer xx

[hopeful1974]

@Mum2boys I was just thinking that you definitely should ask your oncologist about her second jab as I’m sure you’re entitled to it. The trick will be about the timing of it - it’s better to have it in a week when your immunity is better. xxx

[GonnaGetThruThis]

So far so good but it is only the first morning, so day 2.  Slept lightly better than i usually do in the first week (approx 10pm - 2am - 6am) whereas on EC it was more like 10-12-3 and that was it!  ive woken up feeling fine so long may it continue.  It feels odd to not have come home with my meds at all.  They offered the mouthwash and domperidone but I havent used them from when they gave to me on the first EC so said to save them for someone else or a later time if/when needed.  I did ask about the injections but the nurse said typically P doesn't have sunch an impact on the white blood cells as with EC but of course they will continue to monitor the levels on the weekly blood tests.

@JessicaBagree about the LGFB course.  i enjoyed mine even though i dont use makeup at all (for now).  The goody bag came after a couple of weeks and it is full of really good stuff.  I'm booked on the nail one next month and will possibly go on the hair one later on if i need.

[JessicaB]

Fantastic news! Everyone need a boost through this process and new life is the cream on top isn’t it?

The skin and make up Look Good Feel Better session was great. Goodies to follow. Sign up if you feel you can x

J

[hopeful1974]

@GonnaGetThruThis I hope today went smoothly. I look forward to hearing how the side effects compare to EC. I really hope you have a pleasant surprise! 

I have been feeling almost normal again since Saturday (day 8 after chemo) so I’m pretty confident that I will make it through the final 3 cycles of this. I seem to have one week where I feel quite yucky and then two pretty good weeks. Even during the first week, I do have some decent days, though, so feel pretty lucky overall. 

Sian xxx

[GonnaGetThruThis]

So lovely to read some good news for sure. 

I'm in the waiting area for my first session of P. I'm oddly nervous and keep saying it's the fear of the unknown even though this technically 'should' be kinder than EC.  

Hope everyone else is doing OK and ill let you all know how this new treatment goes as the week goes on 

[Mum2boys]

Good morning everyone, 

@Louise65 I'm so pleased you managed to get out. I read a blog of someone who had EC chemo and then Docetaxel. They said their 3rd round of EC was their worst round of the whole chemo. We're all very different, but I hope it gives you some hope that the next sessions might not be as bad. But definitely a discussion with oncologist is a good idea. Is your BCN helpful? Maybe she can put your mind at rest too? 

@simplyeve Congratulations! That's wonderful news! What a lovely thing to look forward to at the end of all this. 

@hopeful1974 that's great about your children having had their first jab. Definitely puts your mind at rest. 

I've only had one jab so far as I'm only in my 30s, I didn't get called until May to have it. Then there wasn't anything available for ages. So I had my first at beginning of June and am due my 2nd now. So I'm going to ask at my next appointment about having it cos I definitely feel vulnerable only having had 1. 

I hope you all have a good day. Much love to you all xxx

[hopeful1974]

@Louise65 I’m glad you are a bit better and hope that continues as the days go by. I’m pretty sure EC is the hardest and the next lot of drugs should be kinder to you. Good to have a frank discussion with the oncologist, as it needs to be bearable for you. xxx

[hopeful1974]

@simplyeve What wonderful news! I can imagine how much of a boost it has given you. It is great to have something positive to focus on which can distract us from the side effects of the treatment. Reading about it has definitely given me a boost and I am very happy for you. How kind of you to be thinking of how you can help them out too. I have my sister and her family here today, including my 8 year old niece and they never fail to boost my spirits.

My daughter is having her Covid jab tomorrow and my son had his last week, so that is positive news for us as they will soon be back at school. I’ll still be careful, but I’ve not distanced myself from them except for a week or two back in March, which was excruciating, so it will be nice to know that they and, as a result, I are somewhat protected. 

I wish everyone else well. Siân xxx

[Louise65]

@simplyeve what wonderful news congratulations the time will fly by. Reading that really cheered me up. Fingers crossed you can work something out to get over and help.

Today has been slightly better I managed to go to Asda with my partner shopping. I do have a telephone call with my oncologist Thursday and if still not great will see what he says as the thought of being like this for the next 11 weeks feels me with dread. 

Xxxx

[simplyeve]

Hello Ladies,

Thought it was time I checked in again.  Hope those of you who have been feeling poorly are on the up again and those of you who are due for another treatment are feeling well @Louise65  I definitely think it's the right thing to delay your treatment.

I had my fourth treatment on Thursday, my bloods were done on Wednesday and unfortunately my magnesium had dropped again, but this time my Onc ordered an IV drip for me for yesterday so hoping I'm ahead of the game this time, have to go for bloods again Monday and taking the tablets in between so time will tell.  Am feeling better overall though a little tired today and I have an appointment with him before my next treatment and the nurse has said he thinks he will drop, but not stop my carboplatin dose, for treatments 5 & 6 as that's the one that's causing the issue with the magnesium, @Fairie I'm so glad you have been able to stop your carboplatin now too, I'm sure you will start to pick up now and hopefully manage to complete the herceptin and perjeta, which I think are probably more important for us HER2 positive ladies.

Ladies I had some wonderful news to come home to on Thursday night and I hope you will be able to share it with me, my daughter and her husband have announced their second 👶🍼 is on it's way!  They are much further along than we expected too as she is 15 and a half weeks so baby is due Jan/Feb!  Time for that non alcoholic wine to celebrate I think @JessicaB 😀

They were supposed to be coming over for my neice's wedding at Christmas, but now won't be able to travel as they live in france, but are hoping to plan a trip in September which will hopefully fall in week three of my last but one Chemo treatment and will coincide with her birthday, so as you can imagine I've had a real boost at the thought of not just being a grandma again (secretly hoping for a little girl this time, I love my grandson dearly but it would be lovely to have a little girl to make up the set!) but to be able to see them again, it will be twelve months since we have been together so am really hoping things go according to plan.  

Also now have to see if I can create a plan with my Oncologist to enable us to travel over with our caravan  when the little one arrives, as they have no family close by and managing an excitable nearly 3 year old and a new baby will be a handful so we would love to be able to go and help out, but it will have to worked around the HP treatments as I will still be having those.  

It's amazing what a difference a week makes, I know have a lot to look forward to and I'm sure it has helped me no end having some positive things happening.

I do hope all are coping and maybe this little bit of happiness can be shared around to help us all.

Much love

Yvonne xxx

[GonnaGetThruThis]

@hopeful1974like you, my last EC also 'welcomed me on this journey' with how hard it hit me although by the sounds of what @Louise65  has been going through then I'm lucky it was really only the first week that was tough as the second was manageabale and the this 3rd week I've been fine. 

I've just booked on the LGFB Nail workshop, although the first available one isnt till Sep 17.    I'd read so much about shellac yes/no, normal polish dark or not and there was a lot of conflicting info.  At my bloods and assessment yesterday I asked the nurse and she said (typically like everything) it depends on the person and what works for some doenst work for others but that in her opinion it is best to use a normal polish rather than shellac and to try the dark colour and to look after the nails.
So on the way home I stopped at my regular salon and I went for a manicure and pedicure, asked them to take off the shellac and put on a dark colour in normal polish.   So we will see how that goes...... 

The nurse said also with P to be aware of tingly toes and fingers and it is very common but if it gets painful or to the point it is interferring with picking up things and/or walking to let them know.  also oddly they still work in 3 weekly cycles even though the drugs will be given weekly.  So next Monday will be day 1 then i will go to pathology for bloods on the friday, repeat the same thing in week 2 and then only in week 3 i will have bloods and assessment in the chemo ward.  Not sure if that is the same everywhere else?

Im also curious to see if my period turns up again.  It is due about now and im defintely experiencing my normal pms (starving, insomia - sounds like the side effects of the steriods in week 1) but so far hasnt turned up.  I have a usual 21 day cycle and last time it came on day 30.  today is day 26.

One last weekend of 'freedom' and then it all starts again on Monday.  Apart from Louise, is anyone else having or had Paclitaxel alone?  I'm cant remember who is on a similar treatment plan to me.  I'll be starting this next week for 12 weeks and it really does feel like starting all over again going into the unknown as i feel like i knew how things would be with the 3 weekly EC cycle.

Wishing everyone a good weekend.

Kim x

[hopeful1974]

@Louise65 My last EC knocked me for six. I had some weird side effects but they did all wear off eventually. I really hope you feel better now. So good that your son and daughter-in-law were with you. Hoping for a better day for you today. xxx

[JessicaB]

Hi, just a quick reply… just watched this video which might help with makeup application? https://youtu.be/I5IzMMnPM2o 

sorry it’s not been a better day xxxx

[Louise65]

@hopeful1974 so glad I had today postponed. I'd had a better day upto about 3pm took myself off to the loo and the whole world went weird. Felt sick, very shakey luckily got myself sorted and to door and shouted for my son. No idea why it happened and so glad him and daughter in law were with me. 

@Mum2boys hoping you feeling better after Monday and sorry to read about your son bless him. Not nice for anyone but when it's your children and you can't be with them so much harder.

I've barely been out since middle July apart from supermarket. Especially since my last EC on 23rd July just have not felt well enough. I'm not a good passenger which doesn't help. 

@JessicaB Glad you enjoyed the courses I'm on the lgfg one next week although not sure I'll get much from it as cant see to put anything on once I take glasses off. So may end up looking like a clown lol.

Hope everyone has good weekend.

Louise xx

[hopeful1974]

@Mum2boys Sorry to hear about your hospital stay and having to isolate because of your son’s stomach bug. I had to do that when I was on EC and found it very tough but better to be safe than sorry! My children completely understood (they are 13 and 16). 

I did go to Cornwall straight after chemo as that was the only time we were able to go and to be honest it was fine and a good distraction from feeling yucky. I would probably not choose to do that, though. This month, we are going away for a few days to Wales and timing it so that I come back for my blood test. So, we’ll be going on day 13 post chemo and coming back on day 17. I’m looking forward to it. 

@Louise65 Sorry to hear about the delay to your treatment, but definitely think it’s very important to be well enough for each treatment as the effects can be cumulative. 

@JessicaB I’m glad to hear your enjoyed the LGFB courses and hope you like the makeup one. That’s interesting about the nails. It seems people have different views on it as my oncologist said it was a good idea that I had painted mine black. I have had no issues with the nails themselves so far (i.e. no discolouration or brittleness) so will continue I think. The skin surrounding them is very sore, however, which can be a Docetaxel side effect. I have not found Docetaxel anywhere near as bad as EC, so hope you find it better too. One thing I wasn’t expecting is that I still haven’t lost that much of my hair even though I’ve had 3 cycles already. 

I hope everyone has a comfortable day and send you all lots of love. Siân xxx

[Mum2boys]

Morning everyone,

I've just been reading everyone's updates and I'm so sorry that so many have had a rough time recently. Sending you my love Xxx

But I also find the posts really comforting - knowing we're all moving into a new phase - whether it be finishing chemo or starting a new one. It feels like the end is in sight and it feels good! 

I ended up in hospital overnight on Monday - I had a temperature and needed to be put on antibiotics. My neutrophils were okay though, so that's good. It meant I could come home the next day. But then the following morning my 13 yr old son became ill with a tummy bug. So I'm isolating in my bedroom and being a mum from a distance is so hard! More mum guilt! But he's such a kind boy, doesn't want me to catch anything, and my husband has been amazing too doing things. Plus my mum has been helping so much too. 

We're off camping next weekend for few days which we're looking forward to. I find it so frustrating though that I have to wait to week 3 to do anything! And even then you never get a whole week cos you have to juggle everything around appointments! Although I know it's just sensible really. And it won't last forever. Do you all wait til week 3 to go anywhere/ do things too? 

Sending you all much love and hope you have a good day xxxxx

[JessicaB]

Hi everyone 

I’ve been reading your posts and wanted to send lots of love. Having had my last FEC yesterday, I’m wide awake so I thought I’d send you all a quick message of support and solidarity.  Next is docetaxel in tree weeks time which I’m dreading. I feel a tiny bit less yucky than yesterday so hopefully things will improve by the bank holiday weekend.

I've done two of the Look Good Feel Better workshops. One on nails. I think someone was asking about painting your nails dark.  They have done a lot of research on the dark nails theory and the conclusion is that it makes no real difference, however if you are maintaining your nails, this good. Use lots of cuticle oil and a base and top coat for the best results. Also, they don’t recommend gel nails or shellac. 
The scalp/head care one was interesting too and the follow up notes had lots of useful links to products and hats, scarves etc. Let me know if you want any links. There was a link to the Cancer Hair Loss Charity with lots of useful videos on YouTube https://youtube.com/c/ChemoHairLossCoach. I’m booked on the skin care and make up one on Monday.

in the meantime sending you all good vibes..

love n hugs 
Jess

[GonnaGetThruThis]

@Louise65that's really tough but as you are so poorly then it definitely sounds like the right decision as I think we really need to fit and healthy in order to have treatment again week after week.  Fingers crossed the exta time and the medication helps you quickly.

[Louise65]

Hope this finds everyone as well as can be.

Quick update oncology nurse called me this afternoon and after speaking with my consultant decided to postpone tomorrow's session. Although I don't want it extended I'm happy as feel I'm to weak to go through it tomorrow and would likely end up being poorly. 

Xxx

[GonnaGetThruThis]

Oh no @Louise65 that all sounds horrendous.  Hopefully the antibiotics will make you better and you can have a better day tomorrow before going back again on Friday.

My Oncologist mentioned C alongside the P but said that as my tumor had shrunk a fair bit already on the EC, that there was no point adding any extra toxicity (the word I learnt basically meant side effects) into the body when they werent all that sure if it had much more benefit than P alone.  So hopefully for you the the next 2 weeks on P alone will be kinder to your body. 

Brittle nails and numb toes/fingers are the main new side effects ive also been told about so Im really not looking forward to next week.  it is kind of like starting again as i have just gotten use the the 3 weekly pattern of side effects with EC and this is the unknown again.  Oh well have to remind myself it is all for a good cause.

[Louise65]

@GonnaGetThruThis I wish I could say its been easy. 

Sunday I didn't do anything as no energy and Sunday night got no sleep at all so gp prescribed something to help. Sadly though as Monday went on I felt worse and worse. Called oncology we suspected uti so they wanted me to go to my local a&e as they had no bed. Turned up to be told it closed at 6.30pm I would have to drive 45 mins to other hospital and then sit in a&e. I just broke down said didn't feel well enough. Nurse practitioner called oncology oncall who was happy for her to check obs and give antibiotics if needed but I would have to get bloods checked next morning. Obs ok but uti shown so sent home with meds and told not to take sleeping aid. Yesterday spent all morning in our a&e checking bloods doctor was lovely said my bloods very low but oncology happy as to be expected. Another dip test and no sign uti so was ok to go home. 

I feel OK for bit then absolutely wiped out, hot etc so it's definitely all related to my low bloods. 

Luckily my son came to be with me today or I wouldn't of got to my blood test. I've shed a lot of tears today as just feeling so low from not being able to do anything and knowing I'm back Friday.

Friday it was PC the next 2 weeks will be just P then week off then again twice more.

My nails have started to go brittle and I've got numbness in 2 toes. 

Although it's nothing compared to the EC bad days I had hoped to have bit more energy.

Hope you and everyone else is OK.

Xxxx

[GonnaGetThruThis]

@Louise65 how has the first week on the new treatment been? I remember you said Sat and Sun you were tired but I'm hoping to hear you've improved as the week went on.  Was it just the P you had and are you due for number.2 on Friday? 

[Fairie]

Thank you so much. 
important that each of us is different and even though some of us on same chemo regimes we will all respond differently and decisions will be made on each individuals response to the treatment. 
I have always had a very sensitive digestive system and so when I had FEC chemo 14 years ago I managed five out of six but was admitted to hospital after every single one as they couldn’t keep on top of the sickness for me.

this time it’s been both ends non stop and again meds weren’t sorting things out enough, although better than 14 years ago, so we all different in our responses.  I’m just glad I managed three out of four. 

huge love xxxxx

[hopeful1974]

Dear @Fairie , I am so glad to hear that your have arrived at a sensible outcome with your oncologist and that it won’t have much of an impact on your overall outcome. It’s all a balancing act, isn’t it? I hope you feel relieved. Much love ❤️ xxx

[Fairie]

Dear @hopeful1974 

Bless you for thinking of me xx

it went well and reached the decision to stop chemo now due to such debilitating side effects to digestive system. He said the percentage of the benefit of having one more was very small for me weighing everything up around my diagnosis and potentially could cause long term issues, so I will continue with Herceptin which is vital. I will soon go for surgery but no date yet. 

my love to you and everyone as alway xxx Sharon aka Fairie xxxxxx

[hopeful1974]

Dear @Fairie , How was your oncology appointment yesterday? Have they come up with a plan to make it all more manageable for you? Sending love. Siân xxx

[GonnaGetThruThis]

Evening all.  Lots of updates since I checked in before we had a few days away in Leeds.  I did the drive back home today 3.5hours and it was good. i am a little tired now so heading off for bed but wanted to check in and say hi.
Firstly no-one should apologise and shy away from commenting just because you only have negative things to say.  This is the one place that I think we should be able to say what we like and have other people around that know exactly what we are going through.  Although it is wonderful when there are snippets of good news, we should be able to share the good the bad and the ugly.  At the same time, of course we need to look out for our own MH and if we have to take a break then so be it!

Im enjoying my final week 3 of feeling like normal which is good.  I left my daughter with family friends and we will fetch her on Sunday.   Not really sure what I'll do this week but I want to have a couple of lunches with friends, do a few gym workouts and enjoy a dinner or 2 with my husband.  I have no idea what the new weekly P treatments will be like, and i dont really want to think about it now, so will just wait till that time arrives next week.

For anyone else cold capping, I am 8.5 weeks in and so far so good.  I did have a little bit of additional shedding last week but that has stopped.  So unless something changes between now and next Monday, then I will again suck it up and try again.  The thought of having that thing on my head weekly for the next 12 weeks is already making me feel a bit traumatised, so I will just have to see how it goes week by week.  Last time it was the first 15 mins and the last half an hour that i really struggled with and i think this time it should be 30 mins shorter so we will see. 

Sending love to all

Kim x

[hopeful1974]

@Impatience How wonderful that you only have two more to go. That must be very good psychologically. I hope the side effects aren’t bad for you going forward. I’m glad you sailed through your final EC. xxx

[Impatience]

Hi @simplyeve @and everyone else. I am really sorry I haven’t been on the forum for a while. Now I’ve caught up with posts it’s good to read there have been more positives than negatives for everyone. 

My second EC really affected my mood and I got very low. My BCN advised me to come off the forum/internet as I was becoming obsessed with everything negative. My Onc said it was a chemo effect. She was right as I sailed through EC number 3. Had chemo 4 last Wednesday which is Docetaxel. It’s reduced my neutrophils and WBC so needed hospital treatment but hopefully it will just be a blip. Side affects are different to EC. No nausea but sore mouth so far. Tiredness for both. Only 2 to go! Yay!

Wishing everyone lots of luck and positivity during the journey. 

Imp xx

[hopeful1974]

@simplyeve That is a lovely wig and a great colour on you. I am glad you feel that you have found a way to feel good enough to get through your remaining treatments. I am day 3 after chemo now and having that fatigue that the steroid comedown brings. I am just napping when needed and hoping the nausea won’t be as bad this time. Last time I didn’t continue long enough with the Domperidone so I’ll see if that improves things this time. It helps knowing that there are better days ahead. xxx

[hopeful1974]

Here you go: https://lookgoodfeelbetter.co.uk/