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January 2019 chemo starters

399 REPLIES
Member

Re: January 2019 chemo starters

Glad you have your regime DaisyDi.

I'm on 4x EC then 4x T.  My 2nd EC will be in the 19th as long as my bloods are ok.

My radiotherapy will also be a big area like yours.

Thank you for worrying about me, that's lovely to hear - sorry I hid - I kept reading threads that scared me, so I needed to keep my distance for a bit.

It's really hard to juggle treatment, for me it's trying not to get all the bugs the kids bring home from school.  BUT, we'll do it & we'll be supported by all these amazing ladies here & we'll encourage and cheer each other on.  Step by step, crawl by crawl, we'll get there xxxxx

xxx

Member

Re: January 2019 chemo starters

God I was so worried about you Bluetit. So pleased you've reemerged!  I found out this week I will start on Monday 25th Feb  6 cycles 3x FEC and 3xT but not sure I will manage all and have agreed to a review after first 3.  I really do not want chemo, who does?  I am so scared and I just cannot bear the thought of losing my hair.  I will cold cap and I have thick hair so fingers crossed.  My bone scan is on Friday but they have said the treatment wouldnt change anyway.  Are you having 6 cycles too?  Oncologist also said that when radiotherapy comes around they would do my neck too to zap those lymph nodes.  Also this week I have an echo and ecg and meeting at the onco unit.  My whole life has been taken over by this.  My poor mum has dementia and is in a care home and now I am really frightened to vist her in case of bugs but I wont be able to stay away for months as she asks where I am if I dont go.  When is your next treatment?

Member

Re: January 2019 chemo starters

DaisyDi- soooo happy that your CT was clear.  Do you know what drug regime you'll be on yet?   I've just had another CT - this time a full bone scan.... hoping it's to just tick the box!

 

Trixie lady - My privates started moulting this morning too! I'm cold capping but don't think my head hair will be far behind as my scalp is a little uncomfortable. 

 

EC 2 will be on Tues.... EC 1 Week 1 was hard but do-able.  I was on ABx for throat infection at same time which didn't help side effects! I got really anxious & panicky on day 6 & now wonder if that was the steroid crash? Will pay attention to day 6 next time round. This week I've felt good - I just get tired quickly.  

 

I'm really struggling how to balance not isolating myself against not being tooo risky with socialising... Any tips would be greatly welcomed.

 

Thank you xxxxx

Member

Re: January 2019 chemo starters

Hi G 

Thanks you've just answered my question 13 day into my first chemo and still have my hair was wondering when it might start going noticed today other more personal area's were on the move xx

Sorry your 2nd one hasn't been good mines 25th Feb dreading it  trying to stay positive xx big hugs we're right somewhere near xx

Member

Re: January 2019 chemo starters

I'm same as you LB but my 3rd EC on Tues. I'm half dreading it and half wanting to get it over, as I'll then be one step nearer to EC4 which is my half-way point. Cold capping again and hoping I don't shed as much hair after number 3 as I did after number 2. 

 

Stuckat14, I do the same. 2 lymph nodes positive and told my cancer had 'aggressive' features like extra vascular invasion (cancer cells in a vein in the removed tissue surrounding the tumour) and extranodal extension from one cancerous lymph node which makes me think it's still floating around in my body and then I too think I couldn't go through all this again. Then, when I feel better, I think the chemo will kill it all and I have to remain mentally strong. I go back and forth a lot and it tends to be late at night.

 

Good luck to everyone doing or just done no 3 xxx

 

Member

Re: January 2019 chemo starters

Hi , isn’t the 3 am to 4 am wide awake club amazing , not 😬

I’ve been using the Breethe app , well worth it , at those times in the morning , they even have a going through chemo meditation, just thinking about your breathing helps your head change the subject ( if that makes sense ) or I watch utter rubbish I’ve recorded , it doesn’t matter what time it is as I can snooze the next day 💤 this forum has been brilliant as all us ladies all know exactly how we feel , I’m on 2nd ec , 9 days ago , have the achy muscle , fluey feeling and a few hot flushes but it’s my mental health that I’m really trying to work on , 

I write a diary , I put every positive quote I see in my phone , I talk about “it” when ever it’s doing my head in and I except that sometimes I’m going to feel s@@t ! We’re all in this together ladies , we’re all here for each other and I think it’s brilliant 😄 big hot flushy , tired , achy , sore , hugs to you xx and don’t read google ! 

LB
Member

Re: January 2019 chemo starters

My 3rd FEC coming up on Tuesday.  I'm not looking forward to it.  I've been "nesting" all week - everything ready for a week of fog.  I, too, must try not to read too much information before bed - too many hours looking at the ceiling in the dark.

 

Hugs to all xx

Member

Re: January 2019 chemo starters

Hi all- im just coming out of ec2 fog (although a much lighter fog than ec1). I was up from 3am this morning reading 'predict' website and just worrying bout the future. Consultants have said 'cured' and I've as much chance as anyone else to reach 80 after all my treatment but I had 9 positive nodes and just know that means my chances of recurrence are higher, whatever the statistics. I can do this, but I can't do terminal and I can't even do this again. Sorry I'm just having a moment and thought if anyone will understand it's you lot.  

 

Hugs to those of you on ec3! Half way through in some cases I think so that's good! 

 

Chins up, I'll climb out of this hole soon xxx

G
Member

Re: January 2019 chemo starters

Third EC down and I too most definitely did not want to do it...been a bit of a grumpy thing all morning!!!  Not helped as it is half term next week and I am going to be useless (I too will disappear on here for a week at least) which makes me cross that it is impacting my girls....to be fair, the other treatments don’t fall too badly and as I go on until end of May that’s not bad given there will be both Easter and May half terms (trying to convince myself 😂).

 

I have had my dose adjusted down today due to how awful I felt last time, and then they have also had to adjust the E chemo down some more after my blood results came back  (liver function a bit comprised) so I am really hoping this will all serve to make things better 🙏.

 

Anyway, sending lots of kind words to anyone still suffering side effects or about to embark 💗

Member

Re: January 2019 chemo starters

Hi All,

 

Well it’s that time again, getting my EC3 today. 

 

Got the usual anxiety but I need to get on with it. 

 

I hope everyone is doing OK.

 

I am off to hibernate for about a week!

 

Take care everyone, speak again when I feel more human 😊.

 

xxx

Member

Re: January 2019 chemo starters

Re my message above,  and talking to others, Im beginning to think my "episode" over the park was due to panic attack or body in shock.  Never experienced that before.  Just hope it never happens again . x

Member

Re: January 2019 chemo starters

Hi Bluetit, hope you are feeling ok.  I got my results from CT today and all was good so I will be starting chemo in a couple of weeks so not far behind you ...

Member

Re: January 2019 chemo starters

Had 3rd FEC last Thursday 7th.  Didnt feel too bad day 1 2 3 while on the Emend.  Since then been taking prm prochlorperazine 3mg and/or Domperidone 10mg .  Did anyone find either of those tablets better than the other.  I seem to think prochlorperazine 3mg works better.  Just wondering what others are finding.  Still feeling icky. 

Other day (monday) took my dog for a short walk.  I had just taken both prn tablets as was advised.  Got to field (about 5 mins walk) then found I couldnt walk anymore. It was like I was frozen to the ground. Walk 10 steps and the frozen again. Of course decided to come home and managed it slowly. Had district nurse round about 2 hours later to flush PICC and told her what happened but she didnt seem too bothered and said well done for coming straight home....   Havent been out since so poor dog has no walkies.  Has this happened to anyone else.  Was wondering if it was because I took both prn tablets near together.  Anyway, taken Domperiodne 10mg this morning and still feel icky but now to scared to try the prochlorperazine.  Such a nice day. Would love to go out for a short walk with the dog.  

 

Hugss to all Smiley Happy  

LB
Member

Re: January 2019 chemo starters

Hi Neecy since I went for the shave I have been wearing a small woolly beanie to bed 🤗

G
Member

Re: January 2019 chemo starters

Aw thank you MaMa JuJu, you are very kind and these words are even more amazing when I know you are going through the same, means a lot ❤️

 

Hi Val Beach, they are the eylure c lash (there are three styles to choose from especially for us).  I don’t know what they will be like but a good make and nice to have them in your back pocket 🙋🏻‍♀️Xx

 

I have just had a really good friend over for lunch and feel brighter again (despite me only eating cereal 🤣🤣)

 

xxx 

Member

Re: January 2019 chemo starters

Hi G,

 

i am so sorry to hear that you haven’t had a great time so far. Hang in there.......it’s a means to an end. 

 

It usually takes me about 9 days after my treatment to feel more human and then I get stronger each day after that. Don’t get me wrong, I don’t feel on top of the world but I do feel better than I was feeling. 

 

I was pretty active before the treatment but now I just tend to walk with the dog and get some fresh air. As long as I am doing something I am happy. I will get back into it once the treatment has finished. 

 

My eyebrows and and eyelashes are still intact but I am guessing they will fall out quite soon. Thanks for the tip about the eyelashes, I will definitely have a look at them online. I do need to get booked onto the Look Good Feel Better course. 

 

G, please don’t give up. You are doing amazing and this part of the treatment will be over soon. I just call is a temporary blip in the system 😂😂😂😂. 

 

Sending you lots of love and hugs.

 

MaMa JuJu xxxx

 

 

Member

Re: January 2019 chemo starters

Hi , 

do you know which eyelure lashes are best , I’ve just been on boots website and there’s loads 😄 thankyou x

G
Member

Re: January 2019 chemo starters

Hi Neecy,  thank you!! I did manage to snooze a little from 6, typical, hope you went back too! You can buy sleep hats which are super soft on amazon (I don’t need one but I got one thinking I would!).

You will have a good time on Monday...you may be the one to share the eyelash product info as they didn’t know about it at mine, you could be star pupil 😇.

Have a good day xx 

 

Member

Re: January 2019 chemo starters

Hi G, sending you a 5am virtual hug! I hope you have managed to get back to sleep, I've been awake since 3 too! I had my 1st EC on 30th Jan and have shaved my head in order to take control... In fact I think that is why I'm waking up so much because my head is so cold! Thanks for the tip about the false eyelashes. I've not heard about those. I have the Feel Good course booked for Monday so will no doubt find out more tricks. I hope you feel better with next cycle, I had some extra anti emetics which seemed to work. 

G
Member

Re: January 2019 chemo starters

Hi everyone, I have been mostly quiet on here since EC 2, EC 3 this Friday same as MaMa JuJu (I have 1 more EC after that (4) then 4 tax so not half way yet). I haven’t been contributing on the forum (other than the occasional hug to people) as really not felt like it.  Not had one day in this whole 2nd cycle where I haven’t felt unwell, varying degrees but evenso pretty rubbish and the tiredness is dreadful too.  Not one day of feeling close to normal.  Really dreading number 3 as I know it is compounded each time ☹️ (Think that is why I have been awake since 3am!).  I too got teary Val on the steroid come down, so hopefully that passes for you ASAP.  I am also really thinking I want to stop now, as far as we know the cancer is out, I have yet to have recon, I have yet to start tamoxifen, I want this bit of the process to end now.  I know I won’t stop it for my husband and our 2 daughters sake but I have absolutely had enough, sorry for sharing. 

 

I have been keeping up to speed with how everyone is doing and it is a bumpy road.  I have especially been empathising with the hair!  My hair, despite cold capping, started to shed on the weekend before my 2nd chemo and I had to go for the shave the same week. Despite always having long hair, it did feel better after doing this, the uncomfortableness and the anxiety around it going was nipped in the bud and a new normal to get on with.  This weekend, the same weekend in the cycle, the remaining shaved hair is coming out so assume I will be skin bald as week goes on, another new normal looming!!  I too have a wig (long, real hair one, much thicker and nicer than my own hair ironically) and have worn a couple of times just on occasional school run etc to get used to it but it is hard, reminds me more that I don’t have my own hair than when I am bold or in a hat...think I fiddled with my own hair a lot and not the same in a wig as I am constantly worrying I have moved it so it doesn’t look right etc checking in my handheld mirror with not much subtlety 🤦🏻‍♀️

 

How are everyone’s eyelashes and eyebrows doing? Mine are ok but dreading them departing.   I did on the bright side do the ‘look good feel better’ course last week to teach u how to do makeup etc when undergoing treatment and you also get a lot of goodies to come away with so if u haven’t done this yet then get booked on!  I have also ordered some, just launched,  eylure chemo lashes from boots (fake lashes made especially for chemo ladies so gentler glue and a wider band to adhere to skin) hoping I won’t have to open the box but at least there as a back up.  

 

Hows everyone doing weight/fitness/exercise wise?  I used to run before this a few times a week and do a Kettles and a Pilates class but  not run once and only managed a couple of classes, really hoping I can improve here as despite so far not putting on weight as far as scales concerned,  I am definitely looking and feeling far from how I was.  This is also not helped by food I feel able to eat due to feeling sick which is not what my body reacts well

to.  

 

Right, going to try and get a little more sleep.  Massive hug you amazing ladies xxx