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JULY 22 CHEMO STARTERS

Dimpled
Member

Re: JULY 22 CHEMO STARTERS

I’m based in the Nordics 🙃

angelalee
Member

Re: JULY 22 CHEMO STARTERS

Where are you? My dear

Dimpled
Member

Re: JULY 22 CHEMO STARTERS

@angelalee Hello dear! 
The baby’s well 🙏🏻
this will be my second chemo of TC(Docetaxel, Karboplatin) PH(phr sho-antibodies). Mine started to fall out exactly on day 14 post first chemo n I had severe side affects (chemo+ post partum). Not sure if they use cold caps here I haven’t seen anyone using n neither did my contact nurse mention it to me 🤔 I think it’s really commonly used in UK though.

Warm hugs n ❣️

angelalee
Member

Re: JULY 22 CHEMO STARTERS

Hi @Dimpled

Hope baby is doing well. Is this your 3rd or 4th weekly paciltaxol I could recall? I am on the 4th one right now. My hair gets a bit thinner but didn’t fall in patches yet, though I use cold cap. 

Hi @Angelgal I am also worried about my eye brow and eye lashes  
@GreenBird Hope the session this afternoon goes well 

love to you all 🤞

 

 

Dimpled
Member

Re: JULY 22 CHEMO STARTERS

@Angelgal  Hello dear! I’m fine struggling a bit to keep up with the innumerable appt, blood tests, hospital visits, meds n 🩼

finally got rid of the blood thinning 🩼 yesterday 🙏🏻 So now only Zarzio on treatment day 4-8 😶 Although Zarzio also isn’t pleasant to have on my list but I don’t have a choice here 🫤

one of my previous blood thinning jabs left such a horrible bruise n mark n it just keeps getting bigger n more blue 😖

I have not used the cold cap infact heard it for the first time in this group. But I have heard that it doesn’t really help so not worth it    🤷🏻‍♀️

I got a pixie cut in the hope that it might reduce the hair fall but that doesn’t seem to help. I now have hair falling all over the place 😔

I got to know from others that it takes a couple of months to loose your eyebrows/eyelashes 🥴

I still haven’t bought a wig 😒 my last visit to the wig shop wasn’t a pleasant experience so I’m not actually looking fwd to my next visit (whenever that’ll be…)  🤷🏻‍♀️
So far I think I’m ok thanks for asking although PPD kicks in from time to time but I’m trying to cope up n keep my mind occupied. 
Thanks a lot dear really need all the luck in the world to make it through!!

Lots of warm hugs n 💕

Angelgal
Member

Re: JULY 22 CHEMO STARTERS

Hi @Dimpled 👋

I've not been on here for sometime. Just had things going on...

I do hope your OK. And your right, hair still comes away even when it's cut, I just don't think it's as noticeable as when it's longer. It is really tough when you hair comes out. Mine did about 16 days after 1st FEC. But, I had told myself it was going to happen as part of treatment, even though I used cold cap twice. By 3rd go, I'd given up on cold cap. 

So far (2 treatments left though...) I have managed to keep lashes and brows, not everyone loses them...please try not to worry, easier said than done ofc. My brows have got thinner I notice...

I worry about my hair growing back to especially with Taxol. I'll be getting mine shaved soon as its barely there, like as though I'm hanging onto every last hair. Cannot leave home without wig as it's so patchy now.

That's a lot of meds to take there, and they take their toll, and your dealing with your new baby, so hope you are ok. Wishing you such good luck with your treatment tomorrow. I so hope it goes well. Will be thinking of you...

And thoughts to everyone, and hope everyone all getting through as best they can

Sending love ❤ 

 

 

 

Pollyannasglad
Member

Re: JULY 22 CHEMO STARTERS

Hello you lovely people. Third chemo this afternoon ..... that's the first of the four PC cycles. This morning my hair started falling out all over my body, spotted the lower region in the shower but checked my head next and if I gently pull, it all comes away. I'm seeing my young grandchildren at the weekend so I'm not tugging anymore and will just chat to them about my hats and scarves. Trying to be glad that the chemo is just doing it's job and attacking all the fast growing cells, especially my triple neg cancer! I will miss my eyebrows though! Hope you're all coping, hugest hugs to you all. xx

Dimpled
Member

Re: JULY 22 CHEMO STARTERS

@Pollyannasglad@Watcher72@angelalee@GreenBird@Shi@flower77@lolagee@NKB@Angelgal, Hi All! Hope that you are all coping up well with whatever treatments you are having this week and if you are having a break try to make the most out of it 😉
My update I got a pixie cut on Wednesday as my hair have now started falling out in clumps. I’m already dreading getting my hair chopped off as the length really doesn’t help stop the hair fall 🥺 I’m now scared thinking about loosing my eyebrows n  eyelashes in the very near future n when my hair will regrow 🥴

Started with the Cortisone meds 16 tablets  today morning while 16 more to take in the evening 😖 in prep for the next chemo scheduled for tomorrow. But I’m also nervous as the last chemo side affects did take their toll on me 🫤

Sending hugs n best wishes ❣️

angelalee
Member

Re: JULY 22 CHEMO STARTERS

@GreenBird 

Hope you feel better over the weekend. I’ve heard EC is the stronger one. I’m getting 4 rounds of EC after my 12 weekly Taxol. 

Yes, stay strong everyone. 

GreenBird
Member

Re: JULY 22 CHEMO STARTERS

Hi all, just to say my first EC Friday was fine, nausea and tiredness hit me a few hours after I got home and I have mainly eaten toast since Friday but getting better. I've also fallen asleep a lot during the day, I'm just going with it.

Came out in a rash after I took steroids yesterday and I've remained red faced since- I called the hotline to check that and a couple of other bits and was reassured all meds side effects and not to worry about as improving.

@NKB really glad you had a positive experience and I hope you are able to be out and about with your son lots, I'm hoping to be out and about by Tuesday judging on how I feel now.

@Pollyannasglad thanks for thinking of me, glad to hear your session went ahead, hope you are feeling well since Friday.

Stay strong everyone and No Guilt about low moods/the impact on others/feeling 'selfish'/wishing you could turn back time and somehow magically prevent this.....go with the feelings, reach out for support, get all the help you need from every source you can. Everything you feel is valid on this overwhelming journey. 

angelalee
Member

Re: JULY 22 CHEMO STARTERS

@Pollyannasglad Definitely ask for your advice for Cyprus. 

perhaps ask your nurse re light sleep. I am on Paclitaxol and my sleep gradually gets better. I couldn’t sleep at all since I had a recall of mammogram up till my chemo started. 

Pollyannasglad
Member

Re: JULY 22 CHEMO STARTERS

Something for you to look forward to for 2023, I look forward to recommending some lovely places off the tourist routes! Hope you love your wig!

Just had a sofa doze after another sleep light night! Are any of you noticing that sleep is better or worse with/without Carboplatin? This is my first Paclitaxel only week. Hope you're all coping today, especially if you have children on school holidays? x

 

angelalee
Member

Re: JULY 22 CHEMO STARTERS

@Pollyannasglad 

Wow, it’s interesting to know you went to school in Cyprus. I have never been there. Yes I will be there once all of these will finish. Thank you.

A good tip of imagination-going through so many scans, biopsies have been frustrating. I have never ever done so many examinations in my life before, but those being done in the last month. probably all of you here shared similar experiences. It was scary and hopeless. Sometimes I’m still questioning why this happens to me. But I just let the idea go and swift to something positive. 

Hope you all have a good weekend. I am going to collect my wig this afternoon. 

 

Pollyannasglad
Member

Re: JULY 22 CHEMO STARTERS

I'm really sorry to hear that you have had to cancel your Cyprus trip, it's my 'happy place' as I went to school there for three years and have been back so many times since. When I've been having biopsies and scans in the last months, I've closed my eyes and imagined I'm laying out gazing at my favourite view in all the world! Hopefully next year we'll be able to do it for real? Dream big....we deserve it! xx

Shi
Community Champion
Community Champion

Re: JULY 22 CHEMO STARTERS

Flower keep the fluids flowing to flush through your system ❤️💕💕Shi xx

angelalee
Member

Re: JULY 22 CHEMO STARTERS

@flower77 @Great. Have a good rest over the weekend. 

Pollyannasglad
Member

Re: JULY 22 CHEMO STARTERS

Fantastic news.....well done ❤️

flower77
Member

Re: JULY 22 CHEMO STARTERS

Afternoon to you all 💗 

Just got back from my first treatment no reaction I’m pleased to say just feel tired . just glad everything went ok with no reaction . 
Thinking of you all 💗 xx

angelalee
Member

Re: JULY 22 CHEMO STARTERS

@Pollyannasglad 

it’s great to know they have plan to bring the surgery forward. 

Hope all of you are coping well with the treatments. 

I had my 3rd weekly Taxol Thursday yesterday. It was ok and manger to jog/brisk walking for 45mins yesterday. I’m trying o exercise on daily basis which I believe help me fight with the side effects, as well as acupuncture I do immediately after my infusion on Thursday afternoon. 

I use cold cap as well, don’t know when I will start losing my hair. The nurse said 17 days after the first infusion which means this week or next week. 

I’m a bit down as we are supposed to fly to Cyprus today for holiday for 2 werks. We booked it in Jan and I canceled it when receiving my diagnosis on 6 June. I had to send my 12 yr son to his grandparents in Poland before my chemo started. I would have kept him with me if I know the side effect is not too bad. 

love to all of you here. 

 

Pollyannasglad
Member

Re: JULY 22 CHEMO STARTERS

Oh and P.S.

It was an interesting afternoon yesterday. The nursing team were somehow more confident, just as busy but calmer. Completely different vibe, steroids iv but none to bring home this week....my bloods were great today, if I can keep on top of that I'll be pleased. They reckon I should have a scan of some description in the next few weeks...that would be normal practice apparently to see chemo.is working or surgery needs to come forward. My scalp has been feeling really stiff and apparently that can indicate imminent hair loss even after one week of PC, 'everyone is different chant'. There was a poor lady in the corner of the room cold capping but a previous team hadn't set it up properly and she started to defrost everywhere. No problem, the afternoon team swept her up and started again.... literally cool in a crisis bless them! B12 injection this morning, need to book a stricter hair cut too!!! Peace in your souls my fellow travellers. ❤️xx

Pollyannasglad
Member

Re: JULY 22 CHEMO STARTERS

Morning @Watcher72 sorry to hear that Covid has temporarily messed things up for you but sounds liked the 4th vaccine is helping you out, hope your temperature stats settled and you'll be ready to fight on very soon. Your kind words really helped me to regain focus, I didn't enjoy having a mini-meltdown but it was obviously needed and the husband needed to hear it too.😉@flower77 how did you get on last week? I've only just done my second yesterday and am beginning to work out the systems, the important questions and not feeling like I'm going to have to call 999 every night....sleep in an issue but I'm adapting..... slowly!  @Dimpled omgosh yes! Acceptance came very early for me, it was all the sad faces from clinical staff and family that fired me up and made me behave in a positive way to protect everyone else! In a strange way I created the situation where everyone thought everything was ticketyboo. This week, when a medics ask me what I'm worried about today, I've practising saying (with a big smile) 'death' - because that's truthful and gives them a more balanced handle on what's happening in my head.  @lolagee I know - this group has been amazing at listening carefully to what's said, and sometimes what's not been said loudly enough....the fact that we already have enough trust in each other to be so open is a real gift - I'm glad you're on the up after an emotional day too - be kind to yourself too. @NKB @ thinking about your son and the whole issue around holidays, are any of the support organisations offering age specific days for young people in your area? If you're rural like us it might be harder but worth a look? I was also thinking about all the different regimes we are on....I've been told a few times that we might chop and change...my surgery comes after chemo (PC then EC), so even now I'm keen to hear about the surgeries and radiotherapy right at the end.@GreenBird where are you with treatment this week, I apologise for not remembering but the heat definitely melted my brain this week!!! I think you and @NKB  are on similar paths? @Angelgal have things settled for you? Did you get a PICC fitted? The steroids made me a bit manic but this week I had them IV but not sent home with them? How are you now it's cooler? @angelalee I'm a walker, have you managed to get out and about much? The steroids gave me a bit of visual disturbance last week but that's ok thank goodness, didn't want anyone to think I was walking around tipsy!!  🥰

 

If I haven't name checked you....please know I'm thinking about absolutely everyone and sending such respect, love and heartfelt thanks. Shout out and say 'oi, still here you know!!!' We are are facing tough times, thank you Wonder Women! ❤️

flower77
Member

Re: JULY 22 CHEMO STARTERS

Hello everyone 

@NKB Sorry to hear you have covid and been in hospital . Shame about not having your chemo tomorrow but glad your temperature has come down . What a worry for you on top of coping with everything else . Good job you had your 4th jab too . I’m sure your children even though from a distance are glad you are there 💗 .Sending hugs and hope your covid goes quickly . 
It’s so true about our emotions being up and down it does me good to have a good cry 😢. I’m feeling positive about tomorrow 💗 .
Thankyou everyone for the kind messages  💗
sending hugs and prayers to everyone xx💗

Watcher72
Member

Re: JULY 22 CHEMO STARTERS

@Pollyannasglad  - I would agree with what @Dimpled says - please don't be too hard on yourself.  It's very easy to just keep trying to carry on as normal, and to a certain extent that is what we need to do. But when those hard / down times come don't feel bad for having them. Let them come, let yourself cry, feel angry, feel like doing nothing but stare in to space. Come on here and rant / vent / rage. We all get it.   Take each day as it comes and know that once your husband can stop isolating he can make it up to you 😉  You will have times when he needs to be the one looking after you. 

@NKB - hope you're doing OK and still feeling reasonably ok x 

@flower77 - good luck for tomorrow. Sending you love tonight and remember that the nurses are there to help. Don't feel afraid to ask them anything. They are all reassuring and will talk you through any queries or worries that you have x 

 

I was due to have my 2nd round tomorrow.  It's now had to be put back a week 😞   My temperature started to rise slowly and I felt really tired on Sunday - so I rang the red card number later in the afternoon, and they told me to go in as it was still going up. When I got there it had gone from 37.7 to 38.9.  So I had bloods taken etc. and they told me I had tested positive for covid.  I was admitted to have antibiotics via IV as a precaution in case of infection.  My temperature has stayed around 37.8 so although not terribly high they didn't want to let me go home in case it spiked again. I had IV antibiotics until yesterday - my temperature has now come back down to normal so came home in the afternoon.  Seems like everything is fine and no signs of an infection, and temperature just covid related.   The covid symptoms have been minimal - just a bit of a cough, so glad I had the 4th jab a few weeks ago.   

The nurses were fantastic and worked so hard looking after everyone - especially in the heat we've had over these last few days 🌞  one of them bought ice lollies in for everyone on the ward, that was really lovely of her - and very welcome 😋

Glad to be back home - even though I am now isolating, I can at least talk to my kids and wave at them from a distance 😂 I know they feel better that I'm home.    

Hope everyone else is Ok and coping with whatever you're dealing with right now x 

Dimpled
Member

Re: JULY 22 CHEMO STARTERS

@Pollyannasglad Dear!! Please don’t be so hard on yourself. We have enough s*** to deal with already no need to add guilt, depression to aggravate the situation more. Not that I’m an expert at these things n am struggling myself with PPD, but I’m trying to stay strong, have so far only shared the tragic news with a handful of people.

I don’t like to gain sympathies n somehow when people sympathize I tend to feel weak and end up breaking down in front of them. Instead I’m trying to take one day at a time, being grateful for every sunrise n sunset ticking off the checklists which I currently have.

Having said that me myself if left alone for 5 mins end up dreading the worst as to what the future might hold for me.

Also I think I’ll take time to share it with friends and close group once I have started to recover but that’s at least a couple of months or more down the lane.

So hang in there and you are so optimistic and a strong woman and indeed an inspiration for others on a similar journey.

Remember at the end it’s all a ‘Mind Game’ i.e.   Acceptance. As soon as you accept this harsh reality it will slowly start to sink in. Not that I’m at the best point in my life to be giving out free advice on psychology but hey you were there to boast my morale when I was at my lowest n I do owe you one 😉

Indulge yourself in activities such as gardening, book reading etc. anything that can help keep your mind occupied. Have your grandchildren visit you or if that’s not possible FaceTime with them 🥰

I know it’s very tough n scary but please don’t be hard on your husband either. He has enough to deal with Covid n accepting that his life partner is going through the worst at the moment. Think that he’s physically isolated n can’t possibly even share what he’s going through emotionally right now. So stick together n come out strong. Hopefully after the storm it will be much more calmer n smooth 🙃

Lucky you!! Make the most out of it if you are not experiencing any side affects yet!! Lovely weather n infact in this part of the world possibly the hottest day of the year/summers which is rare for us, so try to make the most out of it. I saw the news about this sudden ‘heatwave’ in UK n according to the last few posts it has cooled down a bit, so go out for a nice stroll n try to keep your mind busy(which is easier said than done) but hey at least we are trying n learning how to cope up with stress!

feel free to reach out again if it still doesn’t help! 
Sending warm hugs n best wishes 💕

@lolagee Hello Beautiful! I recall my nurse asking me to take a paracetamol before taking the jabs(Zarzio Day4-8) of treatment. Since these 🩼 are aimed to affect the chest, hip n back areas, May be that’s an explanation for the severe backache but that did help! But please call your contact nurse they are quite helpful with any severe symptoms which you are experiencing!

No! I’m based in the Nordics. I did get a voucher for the wig worth 400£ but I didn’t like any so far. Although the attendant was quite helpful said I could get the color length customized as well as could get extensions added but I’m thinking of visiting few others as they might have a better variety. Just trying to get a good option as long as I still have my original locks (sadly they have started falling out 😔 )

Im just delaying the haircut although I intend to book an appointment soon. 
Sending hugs n warm wishes ❣️

lolagee
Member

Re: JULY 22 CHEMO STARTERS

Sorry to hear you hit a low patch . It’s only natural because we as women just keep on going and feel guilty if we breakdown . My partner bless him has always got people saying to him how it’s awful what we’re going thru and wishing us well etc etc and sometimes I’m thinking .. but it’s ME who’s going thru it ME!!! I had an emotional day on Sunday but then picked myself up again and we do feel guilty cos others are worse off or braver or stronger .. but we are all strong 💪 and we are allowed to have wobbles and cry and shout .. you are doing amazing 😉 so if you want a day to rant and rave or cry 😢 just do it !!! 

Hope all you ladies are feeling good today  be kind to yourselves.. much love sent ❤️

lolagee
Member

Re: JULY 22 CHEMO STARTERS

Hi thanks for advice on bone pain I do think I need something stronger when the pain starts it’s like having toothache everywhere! Are you in uk ? Do you not get a free voucher for a wig ? I went for a wig fitting at the hospital I attend and a lovely lady called Cheryl who works for browns hairdresser came and let me try on various types and has ordered me one and will even cut it once it arrives so it’s exactly how I want .. if you can’t get voucher she recommended to google simply wigs x

Pollyannasglad
Member

Re: JULY 22 CHEMO STARTERS

Morning everyone thank you for checking in on me @Dimpled and welcome @lolagee .

I think I just hit a very low patch with the heat, and being totally home alone with the Covid ridden husband whilst he was strictly  shielding in a spare room. It kept me busy doing the cooking, cleaning and walking our poor old dog at dawn to keep her cool....but it just made me think 'is this worth it?' So I had a monster moment, had a rage, said how I felt and I think I'm on track again now. I'd been so endlessly positive, 'normal' and outwardly accepting - that everyone forgot that I'm also scared and trying to discover the best way to deal with everything we're all dealing with around cancer. I began to feel invisible and angry with well meaning folk constantly saying how how hard dealing with cancer is for for the husband or partner. One by one this week I've told them all that it really isn't as hard for him, he's getting treated like the cancer patient and I'm not!!! I was kind..but really much clearer than usual!!!! 

I'm feeling guilty too that you're all going through a major set of symptoms and I'm not yet. Ridiculous of me I know because it's not a competition! The first week after chemo definitely messed with my mind but apart from major sleep deprivation, a tiny bit of nausea and constipation...it's been ok physically if not emotionally. Last week was P&C with tablet  steroids for 3 days after and today will just be P and steroids. 

It's only the beginning of a very long journey but I'm very grateful to be on it at all. A year ago my best friend was suddenly diagnosed with 3 inoperable/untreatable  brain tumours. She was so dignified and brave but she fell asleep 8 weeks later. I'm going to buck my ideas up in honour of her! ❤️

Dimpled
Member

Re: JULY 22 CHEMO STARTERS

Hi All!!

@NKB I’m fine thanks! No appointments, hospital visits this week 🙏🏻 But aching legs 🫤

The weathers lovely 🙃 So I’m trying to make the most out of it until the break lasts before the next nightmare 🥴

Went to a wig shop yesterday n got loads of info about types n how to put it on etc. Tried on a few but didn’t actually find anything worth buying 🤷🏻‍♀️
The idea of loosing hair is scary n to be eyebrow/ eyelash less is even much more worse 😶

I need to search another wig shop to visit in this week so that I can tick this off my to do list. 
I also need to book an appointment at a salon for a haircut.

Glad to know that you are feeling fine so far! I have had the worst bone churning feeling in my legs, painful backache that can’t be described in words, nausea, loss of appetite, stomach problems, fatigue, headaches which were quite aggravated n lasted for at least 6-7 days. In my case it was post partum as well so although I’m slightly better but aches n pains are still there along with loss of appetite n stomach issues. Already the next chemo is scaring the hell out of me!

@lolagee Welcome on board to our small group although I wish it was some different circumstances n much more pleasant for us to meet but call it destiny or fate. 
I’m on day 13 post my first chemo of TCPH. TC is Docetexel, Karboplatin(Cytostatika) while PH is for antibodies. I have had a sensation similar of bones being crushed in my legs (feels like grinding in the bone marrow). The pain cannot be described in words and won’t do justice to how it feels. 
i was asked by my contact nurse to take paracetamol 500mg post chemo in case of fatigue n pain. I took it for few days n contacted my nurse who asked the oncologist to prescribe me a stronger paracetamol which helped slightly. Please check with your local contact staff. 
@Pollyannasglad dear!! How have you been?? Haven’t heard from you off lately.
@flower77 All the best for Friday ❤️
Sending hugs n best wishes to all 💕

 

flower77
Member

Re: JULY 22 CHEMO STARTERS

Hi @NKB Glad you got on ok with your chemo . Also that you had someone to talk too . Hope your side effects are not effecting you too much  . Thankyou for the reassurance it really does help 💗
Thinking of everyone sending hugs and prayers 💗

lolagee
Member

Re: JULY 22 CHEMO STARTERS

Well done you for doing the cold cap and also having your treatment on such a hot 🥵 day .. THE hottest day 😬.. pleased you got through first session it’s fear of the unknown and we should all be proud we’ve faced such a scary thing .. hope you continue to do good . I’ll keep you posted as regards to nerve pain and yes it’s worth asking advice because that’s why the nurses are there . Hope everyone is feeling well and have all cooled down now .. much love ❤️

NKB
Member

Re: JULY 22 CHEMO STARTERS

Hello everyone 😀

@GreenBird thankyou so much for all the positive information prior to my starting. I was so anxious bit finally went in for my first session yesterday and everything went well. I was given anti sickness and steroids prior to starting. I tried the cold cap and although very cold to start (I didn't think I was going to do it) but managed to the end as I think you just go numb. It did give me a headache which made me feel a bit woosy by the time I got home but that could have been a variety of things- the cold cap, the hottest day of the year. I came home fully stocked with medication - mainly anti sickness for the next three days. I felt fine today which was positive. I didnt sleep well last night as was constantly up going to the loo from all the water I had flushing the chemo out and waiting for something to come on to start feeling sick but nothing. 

I did meet a lady on the ward and she has the same regime as us. However she had swapped over to Taxel yesterday. She had lost all her hair despite doing the cold cap bit she looked well so thought that was quite encouraging. I did t get to have a good chat with her as they moved me bit will find out more next time. 

Good luck tomorrow - will be thinking of you xx

@flower77 thankyou for thinking of me and good luck to you for Friday!! I was feeling the exact same - the not knowing and I couldn't wait to start. You will be absolutely fine, the nurses are the absolute best and no question is too silly especially if it puts your mind at ease. I was asking all sorts yesterday. 

@Watcher72 thankyou lovely and hope you have been coping in this heat. So glad it's fi ally cooled right down. How are you going? Any side effects with you? When is your next treatment planned?

@lolagee I'm so sorry to hear this - you poor thing. Have you called the hotline number? My nurse said its worth calling just for peace of mind as they will be able tonrecommend something or be able to give younsomething for the relief. I heard about the neuropathy too. Its worth a call maybe. It could be a side effect of one of the tablets you are taking too. Let us know if you find anything out? 

@Dimpled just checking in that you are ok??

Sending big love and hugs to everyone here. Hope you are all coping well and we are all here at any time xxx

 

lolagee
Member

Re: JULY 22 CHEMO STARTERS

*** meant docetaxel 

lolagee
Member

Re: JULY 22 CHEMO STARTERS

Hi I’m on dovetail ( taxotere) and cyclophosphamide TC .. I have had the first of four cycles . I know there is something called neuropathy which is numbness in hands and feet but this is more jumping everywhere even in my jaw .. knees . Stomach etc it’s like brain freeze but going randomly everywhere.. 🤷🏻‍♀️Xx

angelalee
Member

Re: JULY 22 CHEMO STARTERS

@lolagee 

I did come across nerve pains and joints pains which are jumping from one part of the body to another part. Which drug do you have? 

lolagee
Member

Re: JULY 22 CHEMO STARTERS

Hello everyone hope you are all feeling ok .. so pleased it has cooled down now ! Has anyone had a problem with nerve pain .. I get random pains everywhere . It’s one week since my first session of tc .. I’m ok apart from that and it doesn’t last all day but it’s like a brain freeze type of pain in different joints . I’ve just been taking paracetamol. Much love to you all and hope you are feeling positive xxx

Watcher72
Member

Re: JULY 22 CHEMO STARTERS

@flower77 - good luck for Friday. Hope it all goes well for you 💕

@NKB - hope today went well for you and your side effects are manageable 💕

Sending hugs to everyone else and hope you've all coped with this heat in the UK x 

flower77
Member

Re: JULY 22 CHEMO STARTERS

Hello to everyone 

Hope you are all doing ok on your treatments with not too many side effects . 
@NKB Hope today went ok thinking of you 💗
I had a phone call of my oncologist today I will be starting Abrexane this Friday every 3 weeks 4 rounds . 
feeling nervous but positive having a picc line fitted Thursday as they could not find a vein last week very well . 
Sending hugs and prayers to everyone 💗 xx Thinking if you all 💗💗

GreenBird
Member

Re: JULY 22 CHEMO STARTERS

Hi @NKB , just wishing you all the best today, hopefully no more delays, treatment starts and side effects are manageable within a few days.

I spoke with a chemo nurse yesterday about  our particular regime and she confirmed it takes time for the dosage to build up and fatigue to kick in but also that the Paclitaxel has more/additional side effects and when we switch to it we will feel like starting again in some respects. 

So basically, hopefully EC first will give us both a few easier weeks to enjoy with the family before we become really tired. 

But hey, whatever happens, you have a community of support to turn too for advice and support and on those low days just jump on here and reach out. 

I hope everyone else is doing ok especially those in the UK with the current heatwave- I hope it's not impacting too much on you physically as you go through treatment. Take care.

GreenBird
Member

Re: JULY 22 CHEMO STARTERS

Hi @NKB , I think it's important to know both what to expect in terms of side effects and that whilst yes, everyone is different, lots of people are fine especially for the first few weeks before the dose builds up in your system. We need hope and things to look forward to and if we know that things might crop up to prevent us being active, but that we *can* be active - I think it helps a lot. It certainly helped me going in to surgery knowing you can have a fast great recovery - it totally changed my attitude as I was freaking out with all the bad stories. 

Take your time and adjust to your experience but hopefully you can do lots of fun things with your son.

Wishing you all the best for Tuesday 

 

Angelgal
Member

Re: JULY 22 CHEMO STARTERS

@angelalee 

Hi, ask your clinic nurse, I had that problem after my 1st chemo...they are there to help with side effects...xx

NKB
Member

Re: JULY 22 CHEMO STARTERS

@GreenBird A massive thanks for all the info. I have totally been unsure so thus is a massive relief. I will be happy for fatigue to kick in around the end of August It has been playing on my mind terribly about the summer but really glad to hear that it won't be a total loss and I should be well enough in my non treatment weeks to do something. Great ❤️❤️ Whenever I have asked the doctors they have just said everyone is different, so difficult to gauge or plan. 

Thankyou ❤️❤️

Hope everyone else is doing OK xx

angelalee
Member

Re: JULY 22 CHEMO STARTERS

Thank you dear 

GreenBird
Member

Re: JULY 22 CHEMO STARTERS

@angelalee I think I read somewhere you can use 'fake tears' which is some sort of solution you can get OTC in pharmacies UK - I had to use years ago for dry eyes for something else and relief was fab, I forget the real name but pharmacist will know. I also found a hot/ warm cloth pressed in the eye area ( not too hot) can stimulate the tear glands to produce oil to reduce dryness.

angelalee
Member

Re: JULY 22 CHEMO STARTERS

I have really dry eyes followed by treatment on Thursday. Is there any eye drop can I buy OTC? 

GreenBird
Member

Re: JULY 22 CHEMO STARTERS

Hi @NKB , yes.as far as I know, 8 rounds every fortnight in that order but I find out more next week.ill keep you posted as it's great if we are tracking each other!

I know the uncertainty is frustrating but having seen a few people go through chemo I'm expecting to be ok over the first few weeks, initially you can be whoozy as they adjust your dosage etc and I know everyone reacts differently but I'm expecting to be out and about doing normal activities within 4-5 days of each treatment, then, as it builds up in your system the real fatigue sets in. So I'm hoping to be good to go until late August. I'm not planning anything major just in case but I'm hoping to do day trips and activities - whilst being careful of Covid, another factor that impacts. I guess what I'm saying is if I were you I'd be looking at fun day trips within reasonable travel distance for your son, during the second week of each treatment, especially the first few weeks before any potential hair loss and any lack of confidence you might experience. apologies if this is exactly what you are intending already, I just thought you might not be aware that it can take a good few weeks for the fatigue to set in and that it might help to know you could plan surprise day trips etc for your son if you have been unsure. The pressure to go abroad or do camping can be intense and sometimes we miss what's right on our doorstep. 

Take care x

 

NKB
Member

Re: JULY 22 CHEMO STARTERS

Hey @GreenBird @GreenBird welcome aboard 😀 

You are the first I know on the same regime. Alot of people I know are on Taxel first or just completely different drugs and cycles all together. Very glad to have someone on the same.

 

It is the waiting and the not knowing how you will be over the coming weeks. With summer here and this amazing weather I can't plan anything for me and my son to do in case I don't know how tired or sick or fine I will be. Its a little frustrating and hard for him listening to all his friends going abroad or going camping or doing some fun family thing. 

💕💕

Watcher72
Member

Re: JULY 22 CHEMO STARTERS

@Pollyannasglad -hope you're still feeling relatively well. I think beforehand it's easy to imagine yourself with your head constantly in a bowl 🤢 it's the image most of us probably have when we hear the word chemo. 

@flower77 - sorry you had such a rough time today. Hoping your oncologist can come up with something to help you 💕

sending everyone else positive thoughts x

Dimpled
Member

Re: JULY 22 CHEMO STARTERS

@Pollyannasglad Dear! Thanks I’ll check with my contact nurse on Monday 🙃

Yes they give me strength but at the same time the tiny fingers make me feel very weak when I think about what the future holds for us 🙄

But it’s a blessing to have them 🙏🏻 as it occupies my mind to stop pondering about my underlying health condition!!

Pollyannasglad
Member

Re: JULY 22 CHEMO STARTERS

Darling @Dimpled firstly,  thank you for your kind words .... all I can say is that my PICC line insertion was a breeze and nothing compared to the pain of childbirth and all the other horrible things you've had to endure! The local anaesthetic stung a tiny bit and then no sensation from the tiny tube being put in place. Inside my arm, chest and neck I can't feel it at all. The site on my arm occasionally ached until I got some snug picc line sleeves to cover it. The IV infusion with the line was a doddle yesterday. Ask your team about what could happen to your veins if you don't have one! Oh and, I had to have it in my left arm as my tumour is right breast. I sleep on my left side but I honestly haven't been bothered by it. No pressure, I'm not medically trained, it was just the right decision for me. Hope those little fingers wrapped round yours are giving you strength!!! 🥰

Dimpled
Member

Re: JULY 22 CHEMO STARTERS

@GreenBird Hope you have a nice, relaxing weekend 🙂

@flower77 I haven’t been able to eat much, it’s been liquid diet although I think the stomach is getting better now 🙏🏻 Although cos of the previous episodes I am quite pale and have lost 1.5kg as compared to when I started at the beginning of my 🤰🏻 So I think I’ll be loosing my weight quite fast this time around. I’m slightly better now 🙏🏻
My kids are doing great 🙃 the toddler keeping me on my toes n the infant both have me wrapped tightly around their fingers 🥰

Had to rush to the hospital to give some emergency blood samples 🤷🏻‍♀️
Sad to know that your treatment didn’t go as planned but wishing you all the best for next week and hope that it goes smoothly for you.

Hugs n best wishes 💕

@NKB All the best for Tuesday ❤️
@Pollyannasglad Glad to know that you are doing well n im loving your positivity and warm vibes 😇

The dodgy node and another biopsy is just another routine grill 🫤 but good that it was identified now!! So all the best for that ❣️
lol your poor dog must be surprised for an early morning walk 🤣 although the weathers lovely for a nice morning stroll but today it’s been too windy and was 12-14 degrees in the morning and 13 at the moment 🙄 

Oh the wig doesn’t sound fun to drive all that way and not finding your size 😶

I have the wig n haircut lined up for next week hopefully no more surprise tests or blood samples pop up in the coming week *fingers crossed*
@Angelgal So sorry to know that ur BC has returned after 9 years 😖

Getting to know other people Cancer journeys is scary and the uncertainty of whether you can actually kill the disease and get rid of it for good or not is the scariest part of all 😶

I’m not sure about the PICC line as haven’t had one. Is it worth getting? The way the nurse explained that it’s a minor surgery to connect to the heart didn’t sound appealing to me at all 🤐 but then nothing in this treatment was ever meant to be appealing !!

Wishing you all a great weekend ❣️