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April 2019 Chemo Starters πŸ’–

Member

Re: April 2019 Chemo Starters πŸ’–

Hello ladies

Hope you are all having a lovely day sat in the sunshine.

Ive not long got back from the hospital after having my PICC line fitted.  My sister came with me and commented i said "ow" about 900 times!! The nurses were lovely and kept my spirits up.  Not the nicest thing ive ever had done but at least there is no more needles now.  Ive got my 3rd EC next tuesday then im on docetaxel for 3 sessions so im almost half way there.

Thought i would share a funny story with u all.  Sat in the garden just then, resting before i pick the kids up from school when SPLAT a bird poo lands on my arm !!!  I know its meant to bring u luck (didnt bring me luck last time it happened when i was out running!!) So fingers crossed i may meet the man of my dreams when i nip to asda!!! Ill keep u posted haha !!

Speak soon !!!

Sue xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

Christine great news that your tumour as shrunk so well after two sessions.

 

Steffih i too felt like i was going mad but it was a couple of days after taking my last steroid tablet (i take one a day for 3 days) this was after my second session of EC.  I had to ring my acute oncology helpline because it was so bad.  

 

I had my 3rd and last session of EC on Tuesday and while the nurse was giving me it i started feeling really sick, dizzy and then feeling faint.  The nurses put me on oxygen, laid me down, my blood pressure dropped and they couldn't understand why because i have been fine with my first two EC sessions.  The cold cap started feeling like it was crushing my head so i told them to take it off (30 mins before the end)so i could start losing more hair now.  After another half an hour i felt better they kept checking my blood pressure and it started to come back up so the eventually let me home and i retreated to bed.  Yesterday and today so far i feel ok just a bit tired. So it was a complete mystery!

Not sure now whether to carry on with cold cap.

 

Lovely sunny day today so i am going to sit in the garden and get some fresh air, maybe do a little bit of planting or take some of my craft pictures outside to do. 

Hope everyone has a lovely day.

Debi 

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Phet7178 thank you for letting me know, I just checked, the additional meds I am taking have different names. Today is my first day after chemo and I only had 2 pills in the morning and feel so much better than last time, so I hope it's ok like this. Sorry you had to go through the same thing but glad you worked out what it was xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Steffih - are you taking metaclopromide as part of your anti-sickness meds? I was very agitated and couldn't stop moving around after my first EC, and my oncologist said it must be steroids and halved them. The next cycle it was even worse! We worked out it was actually the metaclopromide making me like that - apparently especially in younger women it can cause extreme agitation (I even had restless leg syndrome). They took me off it and replaced it with cylazine and I was a million times better on cycle 3....

Member

Re: April 2019 Chemo Starters πŸ’–

Susanmanchester I think my reaction to the steroids was beyond manic energy, I feel they gave me too high a dose, I am very thin and was on 4 pills a day, so now they reduced them to two. So sorry about your problems with your cannula that sounds very stressful, I hope it goes better on Friday. I had a port implanted, which has been amazing, as it's taken away all the anxiety around finding a vein. Good luck for Friday xxx

Member

Re: April 2019 Chemo Starters πŸ’–

I didn't mind the manic energy of the steroids but the comedown is awful . Injections were not a problem apart from the district nurses coming every day and dreading it but last time three weeks ago had terrible problems with cannula which was told result of chemo . Back Friday hope I do not end up black and blue while they find a vein on a drip this time not FEC so fingers crossed 

Member

Re: April 2019 Chemo Starters πŸ’–

Hello, everyone, sorry for the long radio silence, just had my second round and wanted to share how my first round went...I didn't have any of the classic chemo side effects like fatigue or nausea, but by day 3 of the steroids I was completely manic to the point I think I was psychotic and then day 4 when I stopped taking them it was the complete opposite, anxiety, couldn't stop crying, complete melt down. On top of that I had a reaction from the injections, the first time I took them I had a racing heart, flushing, panic attacks and the whole thing lasted for 6 hours, same thing happened on the second day, so I just stopped taking them, although I was told it's at my own risk, but I felt so bad. Once I didn't take any of the steroids or injections anymore I felt really good, I even went for runs, I ate healthily (which also was difficult on the steroids) and when they tested my blood yesterday it was perfect. I spoke to the consultant and got them to half the amount of steroids and I insisted on not having the injections. I think I'd rather wait a few days longer to have the next chemo, in case my blood results are not great. Just wanted to share, in case anyone has similar experiences and to say there are always other options. I think for me the most important thing is to get my strength back between each round and be as healthy as possible. I hope it's going well for everyone xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Thank you ladies as always for your support. I will monitor myself from an emotional point of view. I have been on anti-depressants in the past so I know the symptoms to watch out for. 

Hope you are all doing better on various other treatments. 

xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Wow that is amazing thanks . I had surgery in Jan so it should definitely sweep up any nasties left following the FEC good luck x 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Susan,

I have Paclitaxel every week (with carboplatin every third week). I have very little/sometimes no nausea on my weekly treatment, only with the carboplatin. The Paclitaxel just makes me feel very tired two days after and then I start to get my energy back slowly. I have headaches too but they think it’s related to anaemia not the drug. I don’t feel anxious at all with the weekly Paclitaxel as I know the side effects aren’t bad. Hopefully this will be the same for you and hopefully I’ve given you a little piece of mind. With this treatment my tumour has gone from 4cm to 1.5cm in just two cycles (just seen my consultant!). Just waiting on my full blood count results to see if I need a blood transfusion or not. 

Good luck for those going into their next cycles this week. 

πŸ’•

Member

Re: April 2019 Chemo Starters πŸ’–

Likewise taking Sertraline every day and diazepam for chemo days and other anxiety hotspots could not have got through this without them . Have been fine past couple of months but feeling anxious re switch to Paclitaxel every week for nine weeks ... it is a horrible time to be going through and we need all the help we can get . Waiting for counselling too 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all!

 

Sharon and RunningSue - if you're experiencing anxiety and/or depression during this treatment I definitely recommend reaching out for counseling. It took a while for me to get referred but I've finally got on the roster for the Onco-psychology team at my hospital, have seen their specialist 'cancer psychiatrist' for an evaluation and start therapy with them this Friday. I felt better immediately once I started talking to people. I've also been to see a therapist privately, but ideally I'd like to stay with the 'free' option at the hospital because privately is expensive! I also take sertraline (an SSRI) and either Valium or lorazepam when I feel especially anxious. I feel like we should get all the help we can while we go through this difficult time and I definitely recommend it. 

 

For all those having trouble with their anti-sickness meds - I had trouble with mine too, and the second round in particular was horrendous (metaclopramide gave me restless leg syndrome and I had to take valium just to sleep for a few hours before it woke me up again). They switched my meds and the 3rd EC was wonderful, SO much better, I almost wondered if they'd reduced my chemo dose (they hadn't)! We really shouldn't have to suffer. I'm nervous now as starting Docetaxel next week which will be a whole new round of symptoms - hoping it doesn't take them as long to work out the optimum medication for me this time...

 

P

Member

Re: April 2019 Chemo Starters πŸ’–

Good morning everyone

 

I am just on my way for my 3rd EC.  I have got things all ready for my 'sick' week.

Runningsue42 - I took longer to bounce back after my 2nd chemo, the steroids make me feel worse so am glad when day 4 comes. The sickness tablets made me feel more sickly too so the nurse gave me different ones, i haven't used any of these and find nibbling on rich tea biscuits and drinking plenty of water/juice helps a lot.  Hope after your next treatment you feel better quicker.

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all

Ive had nausea every day since my 2nd chemo 2 weeks ago, however the nausea feeling is in my throat.  When ive googled this it seems to be classed as anxiety, and to do relaxation exercises.  Ive been taking anti sickness tablets but theyre not doing anything.  Has anyone else suffered with this? Im hoping i dont have this for the rest of my treatment 😒😒 xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Sharon,

 

So sorry you're having a miserable time. As if bc and chemo aren't enough to contend with, life has to stick it's oar in to!

 

However, if you are in a really bad place emotionally why not mention it to your doctors? A number of posters on other monthly threads seem to have been helped with anti depressents and counselling. 

 

Just a suggestion! Hope things improve.

 

Pollensa x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Pollensa,

 

I though it was just me getting emotional! It's been a rotten week and I have been in tears for quite a few days. I have a lot going on with family and stuff so I thought it was just the stress of all that. I'm sure it is but probably exacerbated by the lovely drugs. 

 

Good luck to everyone for chemo this week. To those ladies changing drugs, Big hugs. Be strong - this too shall pass!
sharon 

Member

Re: April 2019 Chemo Starters πŸ’–

Morning,

 

Even my oncologist grimaced and shook her head when she was telling me about docataxel! However, I thought I'd be  throwing up, bed bound and totally unable to function after reading about FEC but it's not been like that at all. 

 

I have kinda accepted docataxel is going to be harder with different challenges but once I start I'll be half way to finishing the whole bloomin' chemo nastiness!

 

According to other threads your nails should be painted a very dark colour to try and avoid damage. 

 

One unexpected side effect of FEC.....listening to "tie a yellow ribbon" on the radio and in tears by the end of it......... for Pete's sake!!!!

Member

Re: April 2019 Chemo Starters πŸ’–

Hi

 

I am worried too about changing on to Docetaxal, i have been given the side effect leaflet and it all sounds very grim. When i read the leaflet for EC i thought that sounded grim too but i haven't been too bed with the side effects, just fatigue, hair thinning, pain in my arm and lightheadedness. I am having a heart MRI before i start the Docetaxal. We will get through this and hopefully with few side effects.  My last EC is on Tuesday.  

Has anyone heard of using avocado or jojoba oil on nails to help protect them?  Mine are ok at moment but i have read on other posts that they can become cracked and sore.  Just trying to get prepared.

It's lovely to chat with you ladies, hope all goes well with your next cycle.

Take care 

Debi 

 

Member

Re: April 2019 Chemo Starters πŸ’–

This is my reason to be anxious, as I’ve heard it’s worse.

Ive not had a terrible time on EC, hair loss and lethargic have been the majority of my symptoms. I was sick on my 1st cycle but they changed my medication to address that. I’ve also had a tight chest, palpitations, cording in my veins etc but they have being bearable.

Im just worried that I’m going to struggle with worse symptoms x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Kelly73,

 

I'm also worried about moving to docetaxol on next cycle, but for the opposite reason! My only side effect had been about 60% hair loss with FEC, but I know the Docetaxol is more toxic and I may feel really grotty

Member

Re: April 2019 Chemo Starters πŸ’–

Just had my 3rd EC and already getting anxious about my next session, as moving on to Docetaxol. 

My symptoms have got to the point where I am coping with them, so not looking forward to the change in treatment.

Is anyone else this nervous/anxious about how the next treatment will affect them?

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Debi (and everyone),

 

I have been absent from here mainly since the first week of this cycle was horrible and then I've been flat out at work. My first week was compounded by terrible PMS and the period from hell. Thought that was supposed to stop, not get worse!

 

I wear a wig to work every day and I get loads of compliments. Everyone tells me it looks natural. It does get a bit scratchy by the end of the day and it's the first thing I take off (forget the bra!) when I get home. :-) But it was definitely worth it! I know we feel it's clear it's fake but it isn't obvious to everyone else. 

 

Wishing everyone strength and good health!

Sharon 

Member

Re: April 2019 Chemo Starters πŸ’–

Hey,

Just to say my lump shrank to 42mm from max 51 mm but 85 to 90 per cent of cells were dead. It felt softer but I had 3 Fec rather than 4 then docetaxol x 4 which seemed to have more of an effect on the size. 

Lots of love,

Linda xxx

Member

Re: April 2019 Chemo Starters πŸ’–

It's very difficult knowing what to share with others and what you can manage within yourself. I fully admit to being a coward and not really wanting to know much. I accept the treatment, surgery, drugs, chemo etc but don't delve too deeply. I trust the doctors to do their best. Maybe it's because I'm on my own and know that if I were to hear anything untoward I dont know how I would cope. My sister is always there for me but i have to be optimistic and keep all my worst worries to myself. Sometimes it's not easy is it?

 

As for the wig. Yes the cut and style are very similar to my own hair.......but better! My hairdresser spent ages cutting and styling the wig until it was just right. Fortunately it's quite short so a couple of good tugs and it's sorted! But a wig will never be ideal and I'm quite happy answering the door or putting out the rubbish in my hat. I dont think I'll ever get used to looking at the bald me but ......it will pass. 

 

Is it very bad of me to hope the summer won't be too hot....??!!

 

Pollensa x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone - thanks for your supportive comments. I do need to try to focus on the positive, and remember that this is just part of the bumpy road to getting cured. I made the mistake of sharing my negative feelings about things yesterday with both my partner and mother, who had also both been at the oncologist appointment with me. They had also left feeling good (she's good at doing that!) but then when I was going on about how the lump hasn't shrunk I made them both sad and worried too! One of the things I find hard about this whole journey is oscillating between wanting to lean on my partner and mum for support, and wanting to protect them from excess worry. Yesterday I felt like I brought us all down. But today is a new day, it's sunny, and I'm going to practice some of my mindfulness exercises and just try to get on with things! 

 

Re the wig questions - I bought one but have only worn it out twice because it does tend to get a bit itchy after a while. I made the decision to get one completely different from my natural hair, so I could experiment with a different look (I had long blonde hair; I got a dark brunette bob). It's fun to feel like I'm out in disguise but then I catch a glimpse of my reflection and don't recognize myself which feels weird. I have mostly stuck to turbans otherwise - I bought lots of long scarfs in anticipation - yesterday I ran into the woman who runs the wig shop at the hospital and she recognized me and seemed disappointed I wasn't in the wig! I had to reassure her that I did like it, I had just left the house in a rush and that's why I had a scarf on my head....

 

Hope everyone is enjoying the springtime weather!

Member

Re: April 2019 Chemo Starters πŸ’–

Thank you Pollensa.  I have rang the lady where i got the wig and have booked in for the wig thinning a little bit and the fringe shortening, maybe that will help.  I had to go to the hospital yesterday for some blood tests and i had a bit of a meltdown beforehand because i couldn't get it to look right, i ended up going with - what is left of my hair clipped up to make it look thicker on top. I took my hat along too but didn't wear it.  Did you get a wig that looks like your normal hairstyle and colour?

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Debi,

 

I have worn my wig for 3 weeks now and have never had so many compliments about my hair! Yes, it takes some getting used to and you can't wear it all the time (it gets too hot) but it helps to feel normal again. I wear it outside the house and love it!

 

Inside I wear soft jersey hats or nothing....on my head that is!!!

 

Nobody who didn't know you will be able to tell it's a wig and people who do know you will just think you've had a really good hair cut. Honest!.

 

Pollensa

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Christine

 

I think shellfish was on the list of foods to avoid.  Dark green veg are a good source of iron and the vitamin C in oranges help with absorption as do kiwi fruit.  I would ask your breast care nurse or macmillan support centre if they could put you in touch with a nutritionist who can help guide you too, i have booked in to see a nutritionist through a support service called 'Haven' .  Don't worry if you have to have a transfusion they are very straight forward, i have had one before and while they take a while to administer they are completely painless (just the regular cannula and IV).

 

Phet7178 I agree with Christine18 look at the next drug as the one that is going to finish this thing off, think of it as like a video game - the first weapon (EC) knocks the life out of it then the second superior weapon(Doc) obliterates it. Try to stay positive, if you need to get your worries and emotions out come on here and we will listen and support you, we are fighting this together.

Debi πŸ’–

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Phet7178,

I can completely understand how disappointing that could be and it’s completely  ok to get annoyed and upset about it. Let yourself have that time to be annoyed then try and focus on the good news. Easier said than done. Also, I was told that sometimes the tumour can die from the inside outwards so you can be left with a shell of dead cells and actually the inside is completely empty of anything, and like you say they unfortunately only know when they remove it. But remember you got another drug to go so try and stay confident about it. Go in with a bit of excitement that your going to smash from another angle and it doesn’t even know what’s coming yet!! 

 

I had my weekly Taxol today. Been told that my haemaglobin levels are getting low so they need to do a crossmatch so I can be ready for a blood transfusion if it drops again. Bit worried that my next chemo (which is the start of cycle 3 so the double whammy of drugs) will be delayed. And I’m worried about having a blood transfusion, which is ridiculous. So I just went out to buy a load of spinach and kale to juice with some oranges and some shellfish. I’m vegetarian since diagnosis but I’m tempted to buy an organic steak from the butchers. Anyone got any tips for getting my Red blood cell levels back up? Can we take iron tablets during chemo? 

 

X

Member

Re: April 2019 Chemo Starters πŸ’–

Morning all

 

I had a meeting with my oncologist yesterday and it was a mixed bag of good news and bad news. After the meeting itself I felt good but somehow the bad news played on my mind all through the middle of the night (classic). Good news is that results of a scan on my internal mammary chain suggest it is free from cancer (there had been one reactive node) and also as more scans come through and my breast changes they are firmer in their downgrading of my original diagnosis of inflammatory breast cancer to non-inflammatory. 

 

Less good news is that after 3 cycles of neoadjuvant EC, on examining my breast she doesn't think the lump has shrunk. She thinks it's 'softer' but not smaller. The plan now is to wait until I have my first Docetaxel and see if that has more of an effect, and if not to move straight to surgery. I would then do last 2 rounds of Docetaxel after receiving from surgery. She didn't seem overly worried by this development and says whatever happens we have a plan, which is perhaps why I also didn't feel too downcast after the meeting, but as soon as I got home I started to worry about the fact that 9 weeks into chemo my lump is still the same size. I know it may be a bunch of dead cells now (and they won't know until they take it off) but it is still disheartening. I always feel like it aches for about a week after each EC and I had told myself that that meant the chemo was working but maybe not. Anyway, just wanted to kvetch a bit - this journey really is a marathon, not a sprint....

Member

Re: April 2019 Chemo Starters πŸ’–

Hey,

I am from May 2018 and used the coldcap.

I was told not to wash my hair straightaway but regret not doing so as I ended up with a big mat which had to be cut out. 

Also if you are told you can't use the cold cap ask for a theatre cap underneath as this will be fine.

I had my hair cut short and used bands for abit but it soon grew back albeit grey and curly.

It is highlighted now and still short and curly.

Good luck.

Linda xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Good Morning everyone

 

I was also worrying about having Docataxel, but after reading Oots post i feel a little better about it.  I know everyone is different but at least there are some who don't experience lots of side effects so it gives hope.  I have decided that the first week after any of my treatments i am going to be out of it and the other two weeks are going to be my good weeks, whether thats the case remains to be seen.  

Today is another sunny day so i am going out in the garden (under the parasol), then later my friend is picking me up to go for a coffee.  It will be the second time out in my wig - quite nervous, does anyone else wear a wig? and do you feel conscious about it? i think everyone is looking at me and that they can tell its a wig! Family have said it looks great but i still doubt.

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Thank you Oots,

 

Hearing your experience of docataxel takes away some of the fear. FEC and I have got on fairly well so far, apart from very hot, restless nights and fatigue.

Sense of taste comes and goes but I know I'll feel better next week. The whole experience is a venture into the unknown.

 

One more FEC and then docataxel, so thank you for your encouraging words! It all helps....

 

Pollensa x

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all

 

I am on Docetaxel (with a helping of cyclophosphamide) and have done two out of four cycles. I haven’t had terrible side effects. I’ve lost my sense of taste for about 10 days each time and had a lot of pains all over my body for a week (may have been due to the growth factor injection) but with paracetamol that wasn’t too bad during the second cycle. Hair is still on; the cold cap appears to be working. There are a lot of drugs given with the Docetaxel to prevent sickness etc and that’s all worked well for me. I had not much of an appetite and only a little indigestion but that was it. The fatigue is probably my biggest problem. For about a week, I am too exhausted to do anything. I also get a dry mouth for a few days and need to be very vigilant with rinsing my mouth to keep it free from sores. On balance, I don’t think Docetaxel is worse than any of the other therapies I read about in this forum.

My next one is also on the 28th May. Can’t say I’m looking forward to it but after keeping a diary of side effects, I now know what to expect and that I’ve tolerated it. 🀞

 

Oots

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all

I too start on docetaxel after my next round of EC.  Pretty daunted by it as ive heard it gives more side effects?  Im still nauseous 6 days after my last chemo so the unit have prescribed a different set of anti sickness tablets.  Also trying to remember what tablets to take as well as my temperature and throat spray/sweets/gel!!  I was very emotional at the weekend, my hair is thinning rapidly so its getting shaved tomoro - it can come back  whatever colour it likes as long as there is no grey!!  Ive had acheing shoulders and neck and a sore throat and ive had no taste buds for a few days.   I know its not for ever and trying to stay positive is easier said than done but i know with the support of the ladies on here we will all come out fighting this **bleep**.  Xxxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all, 

 

I start Docetaxel on May 28 - looks like I might be the first of the April starters to do so! I'm a bit scared as I had just got used to the EC and worked out how to counter some of the side effects and it all starts over again. From what I've read, Docetaxel is more painful than nauseating, and the side effects are delayed - you feel alright days 1 and 2 and worst days 4 and 5. I guess as long as we're prepared for it...I managed to avoid neutropenia on EC and I'm nervous that I won't on D. Oh well. One day at a time! 

xx

Member

Re: April 2019 Chemo Starters πŸ’–

 hi Pollensa

 

Its sound like you are on a similar treatment plan to me.  My 3rd EC will be on 21st May then after that one i will start Docataxel, i am having targeted drugs too alongside. This week i am on a good week, no SE as such just the occasional emotional blip. I hope the rest of your treatment goes smoothly, i will let you know how i get on with the Docataxel when i have it.

Debi

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi to everyone,

 

Just had 2nd FEC, 1 more and then 3 docataxel , which I am dreading. So far same ses as from 1st cycle so not so bad.

 

The worst thing was the actual treatment. Blood pressure had been fine all day ( taken it twice), goes into unit and BP goes through the roof! Along with that and high pulse they were talking about having to postpone.  You all know what it's like, you're all geared up, last thing you want is to home with nothing done. Had a bit of meltdown I'm ashamed to say. Took one of my bp pills, pressure started to come down, all was well. And then.......they couldn't find a vein! On the very last try, success, thank goodness.

 

Not much I can do about veins, but going to gp, again, to get BP sorted out. Not going through that again!

 

As for Googling, I was awful at the start, looked up everything, scared my self s^%$#^*s. Especially the American websites and YouTube vids.I did have to "come off" them but now quite happy with Breast Cancer Care.

 

Lovely afternoon, hope you are all enjoying the sun. Xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone

I am feeling a lot better this week, i think its with the help of the sunshine and getting my wig sorted.  The ladies in the wig shop were really nice, very helpful and patient ( i have been in and out of their shop since diagnosis!) I am having less emotional blips and keeping myself relaxed by listening to books via audible. 

Phet7178 I too am having chemo before surgery, my consultant said that sometimes the lump can completely disappear with the chemo and targeted drugs (thats why they put a marker in it) Are you having docetaxil and herceptin? 

My partner says i have to keep off googling things as the info can be very dated and sometimes incorrect. I have stuck to this and feel a lot better as i am not worrying myself silly with the info.  If i need to know anything to do with my treatment etc. i call the nurses which i find is the best way.

Best wishes to everyone.

DebiπŸ’–

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Runningsue (and all), 

 

I've had 3 ECs so far, and I can relate completely to feeling low. I'm not sure about you but I've also been put in a chemical menopause during my treatment (as I'm pre-menopausal) and so on top of everything I have the general emotional rollercoaster than comes with your body suddenly stopping producing estrogen! I've been struggling this week but a few things have helped me - starting therapy (I really recommend it - it's hard to get on the NHS but I have seen a mindfulness coach at my local Maggie's Centre and also a 'talking' therapist privately, found someone local who was relatively reasonably priced), and starting to recognize my negative behaviors and intervene in them. In my case that is spending lots of time googling different cases of breast cancer, reading about metastasis and convincing myself it will happen. Which is so silly, because even if It does, there's no point me spending my time worrying about it now! But saying that is easier than doing it. I'm also having neoadjuvant chemo (ie chemo before surgery) which has the added challenge that the cancer is still there - I can still feel it (and see it) and don't have the satisfaction of knowing it's out of me yet. Anyway, I just wanted to say that despite these issues, after a week of feeling low I feel much better now - perhaps the hormones have done something, but I really think the therapy helped and taking a proactive approach to recognizing behaviors that make me feel worse and trying to engage in things that make me feel better (going for a walk if I can, having a nice cup of peppermint tea, reading a good book).  Professional help is really great as well - sending all warm thoughts 

Member

Re: April 2019 Chemo Starters πŸ’–

Worst side effect for me is the fatigue . Before treatment I could walk six miles  easily now 10- minute walk from station tires me out . Now I have finished the Red Devil FEC I have nine sessions of Paclitaxel awaiting . Still have my hair and for those of you cold capping and only washing once a week try organic shampoo gently lather swish with lukewarm then cold water . The wide comb I bought last week has made a big difference and inbetween I use dry shampoo. The worst hair loss was after first FEC it has now stopped and growing back at side where it shed . Worst thing of all is the time this is taking with radiotherapy still to come for me but when I get fed-up I think of how much worse things would have been had I not found the lump in time 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Runningsue

 

I can definitely relate to your feelings. I just had my second out of four TCs. 

Taste buds, yes, this awful tingly feeling on the tongue and nothing tastes right. I can only taste tomato ketchup. I have toast with tomato ketchup and am loving it. The good thing is that the taste came back after 10 days. Not completely but so much better. I wrote down exactly what happened during the first cycle and in cycle two, it was almost identical. So this helps me focusing on when all these side effects will get better. 

Not many things get me down but the prospect of how long this treatment is going on for, really gets me sometimes. I usually love May (everything looks fresh and smells wonderful) but this year, I cannot enjoy it as much because going out is hard when I am so exhausted. It feels like 2019 is a β€˜lost year’. But then, I try to think of it as an investment. I’m enduring all this s@#* to ensure I will have a good life when it’s all done. It’ll be worth it in the end. 

Re hair, I have been cold capping and so far it seems to work. But, to be fair, my hair looks rubbish most of the time because I am not interfering with it, use any product or wash it as often as I’d like. So looking in the mirror is a problem.

 

One really positive activity I did last week was attending a session organised by a charity called β€˜look good feel better’. It was a morning with some beauticians who showed us how to put on makeup, draw on eyebrows, use eyeliner etc. We got a fabulous bad of cosmetics and it was incredibly uplifting to see how we all looked so much better as we started to follow the instructions. Talking to people in the same boat was very nice; an incredible mix of people and we had a good laugh and learned something. This charity has workshops like this all over the country and you can search on their website for locations. 

 

Coming back to the hair, they had invited a lady who had attended this workshop a year ago. At that time, she had no hair and was very poorly. We saw the pictures. This time she had fabulous hair and the transformation was amazing. She looked so well. To me this was a real boost because it restored the belief that no matter how bad things are at the moment this is only temporary. We will get through this!

 

I don’t know whether any of this helps. I hope you will feel better soon. It will all pass even though it takes a long time. I hope you believe this too!

 

Oots

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone,

 

I'm just popping in from the February thread to offer some support.

 

First of all, you're all doing really well and you will get through this even though it seems like you have a mountain to climb at the moment. Just take it one day at a time and be kind to yourself. 

 

Runningsue42 I am sorry you are having such a rough time. What regime are you on? I have had 3 x FEC and one of three docetaxel. At times the horrible side effects have got the better of me too and I have had several Bridget Jones style melt downs! Hopefully, you will be starting to feel a bit better in weeks 2 and 3. That first week is bloomin horrid and feels like the end of the world but you will have better days.

 

Kelly73 I hope you've had a chance to phone the advice line. Don't suffer with any more pains, etc, that's what they are there for. 

 

Christine18 it sounds like the cold cap is working well for you. I hope you manage to hang on to plenty of hair for your birthday and the wedding. I am cold capping too and have managed to keep about half of my hair. I did have a lot to start with so that probably helped. 

 

As for hair loss in general, yes it's awful and no one understands fully unless they have had to go through this but there are lots of lovely headscarves out there as well as very natural looking wigs. A few of us from the February starters have had real success with the fringe pieces you can attach to any cap or scarf. They look very realistic and are easy to wear.

 

Wishing you all strength for the week ahead.

 

Much love to all of you and please ask if you have any worries at all.

 

Sar xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all

I had my 2nd chemo on tuesday, ive not cold capped, my hair has been falling out all week and im a total emotional wreck today.  Ive got no taste buds, im aching everywhere and i feeling so low.  Im not even half way through my treatment yet.

Anyone else feeling this way? 😒😒😒

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Kelly,

 

Can't really help I'm afraid. Only thing I would suggest is phoning your helpline. I've phoned a couple of times and found them very helpful and reassuring. Sores on your nostril must be horrible, I'm so sorry.

 

As regards the hair. I had my head shaved so I could wear my wig. The hairdresser left a very short covering of hair, which is now driving me mad! Moulting everywhere! Getting a complete shave on Tuesday. Cant wait! Might be worth considering....

 

Hope you feel better soon. The first week is always the worst, in my experience anyway.

 

Pollensa

Member

Re: April 2019 Chemo Starters πŸ’–

Sorry Christine18, but this is not a response to your comment. I don’t know how to just add a comment without replying to another one !

 

anyway, I am on EC and am suffering with itchy watery eyes and have sores in my nostril and on my scalp. I have already started losing my hair, so had it shaved off to a number 3.

any advice please?

the left side of my face, along the bone is tender to touch (not like neuralgia). I’ve been having my EC through a needle in my hand, which has caused my arm to be sore. I’m wondering if it could be linked to that, with it being on the same side

 

thanks Kelly

Member

Re: April 2019 Chemo Starters πŸ’–

Hi,

Im having zoladex too as I’m only 28. Such a big needle!!  I had my first symptom last night...the dreaded hot flushes! 2am I woke up on fire! Hardly slept after that then had my 5th weekly chemo session today. I feel like I’ve barely recovered after last week! I pushed myself too much at the weekend going to a wedding 6 hours away! Bit too much. This week I’m planning on taking it easy. 

Cold capping so far is going ok. I haven’t really lost any hair (anywhere!) I expected to lose my eyebrows and bikini line by now but nothing. Im a bit worried it’s all going to fall out in one go from my head too. My birthday is on the 18th and im going to another wedding so hoping my hair last until then! 

Hope everyone is doing ok. 

Christine x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all, 

 

I liked your phrase Debi2 of 'having your emotional hat on' - I've had that on the last couple of days too. I didn't cold cap so I lost all my hair (I just had my 3rd EC). I am also having zoladex to suppress my ovaries as I'm premenopausal, and the menopause has hit me hard this week I think. For the first time really since diagnosis yesterday I couldn't stop crying and I was a real rat to my partner and mother who are looking after me (they forgave me though because, well, look what I'm going through!) The good news is I feel better today and more able to face the day. One day at a time

xx

Member

Re: April 2019 Chemo Starters πŸ’–

Thank you for your positive thoughts and wishes, it means a lot.  I have still got my emotional head on although i am coping a little better.  My hair has thinned incredibly but i am going to persevere with it and clip it up.  My wig app. isn't until the 16th so hopefully feel better once i get that on stand by.  I thought i was mentally prepared for any hair loss but maybe i wasn't.   My energy is slowly coming back - all i seem to want to do is lay down!  I am on day 8 now (thats counting chemo day as 1). 

Mandyr44 hope you are feeling better and i will be here to support you best i can - we can all cry and laugh together when we need to. 

Best wishes everyone

Thanks again

Debi πŸ’–

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Grannypops7

 

I have chosen not to take the steroids, but this is because they are given to prevent nausea, which I haven't had. 

 I had them with the first session, but only took half the prescribed amount as the instructions weren't great. They caused stomach irritation on a half dose for which I had to be prescribed omeprazole.

 

I spoke to the nurses in the chemo unit and they said it was my choice. So I opted out, but I still have some incase the situation changes when I move to docetaxol.