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October 2020 Chemo Starters

Jo22
Member

Re: October 2020 Chemo Startersi

Good idea Shi, thank you xx

Shi
Community Champion
Community Champion

Re: October 2020 Chemo Startersi

❤️ Jo, just one of the many tips and tricks passed down through the threads ❤️❤️which you will pass on to other threads too ❤️❤️ don’t forget to treat yourself to something every time you do something ❤️ slice of cake, new lippy, new necklace, top, wig 👍👍 coloured bobs and tinsel wigs too ❤️❤️ whatever makes you 😁😘💕💕Shi xx

Jo22
Member

Re: October 2020 Chemo Startersi

Awesome, thanks Shi & Karen19! That really helps.

Yes it is filgrastim and its good to know you had no side effects Karen but great advice on the epsom salts baths Shi.

Thank you both. I'll try and do it now!

Jo xx

Karen19
Member

Re: October 2020 Chemo Startersi

Chesterbrownbear... I believe that grey is the new blonde! 😘

Like you I always like to look my best and my hair is a big part of that. I had my long hair cut into a jawline bob a few weeks ago and it was actually quite nice to have a change. My hair is dark brown, but I have battling grey roots for years (I’m 49). 
Losing body hair sounds like one small benefit to the treatment we are having!

Jo... I think the injections are Filgrastim and if they are the same as what you mentioned, I used them in days 5-10. I was worried about injecting myself, but it was fine and I didn’t have any side effects which I could put down to that specific drug. Makes a change for me 😂

Shi
Community Champion
Community Champion

Re: October 2020 Chemo Startersi

Jo, injection, do opposite sides of belly button few inches away from belly button, grab belly in one hand, plunge needle in then push plunger down and hear the click, release thumb from plunger so needle goes back up on itself and out of you then stick in your sharps bin ❤️ I used to do mine between 10 - 11am, they can cause you to feel like body is in a vice as they boost your wbc, do keep check on temp and ring unit too if in any pain. Epsom salt baths have helped loads on previous chemo threads when bone pain caused by the wbc jabs start ❤️👍hope this helps 😘 I was needle phobic but you soon are like Phah, all done in under 5 seconds 🥊🥊🥊 ❤️😘💕💕Shi xx

chesterbrownbear
Member

Re: October 2020 Chemo Startersi

Hi karen19, yes I used it on my 1st and 2nd session and nearly all my body hair has gone. As I’m 61 I usually dye my hair, which I can’t do now. I do like to look as smart as possible, so having tramlines down my parting and hair falling out every where, I might as well shave it all off.  Maybe I can see what I look like as grey or even blonde when it comes back.  😀😀💪💪💪

UmLydia
Member

Re: October 2020 Chemo Startersi

That is hilarious letting your little girl play hairdressers on you! Brilliant idea. I already played it on myself trying out new styles. I didn't think of letting my 5 year old loose with the scissors but she would have loved it. Good luck with your ears  🙂

I decided not to shave off too brutal for me. My hair is not very beautiful so didn't consider donating it but it is really commendable those who do. 

I can pull it out in handfuls. We are locked down again in France and I can say I am literally tearing my hair out in desesperation ha ha ha. 

Feeling fine this last week before next chemo. Good they give us a chance to recover in between each one. 

Glad you are feeling better Karen!!! 

 

Jo22
Member

Re: October 2020 Chemo Startersi

That's great York75, I bet your little girl will look forward to that 🙂

My hair started to fall out at day 16 after my first treatment, after some pin prick feeling in my scalp. I had my second session on Thursday and there is a definite monk ring growing! I went from long to short beforehand (sadly couldn't donate my hair as they had enough of 12" and below) and i was glad I did as it is much easier to cope with. 

Have any of you started taking the G-CSF injections yet? I have to start today and was wondering if anyone had any opinion on what time of day is best? Is it hard to do? I read the pamphlet and there is along list of possible side effects, have any of you had anything?

Thanks ladies.

Jo xx

Karen19
Member

Re: October 2020 Chemo Startersi

Second that about SU - what a lovely thing to do!

Bless your daughter’s heart York-75... that could be interesting 😂 As you say, let’s hope she doesn’t chop anything else off 😬

York-75
Member

Re: October 2020 Chemo Startersi

Well done SU for donating your hair! It will make a big difference to someone. 😍

Hair is very much on my mind too- I am day 14 of cycle 1 and today I think it is starting- quite a bit more hair than normal came out when I washed my hair.

Might have to brave the shave this weekend. I promised my little girl she could play hairdressers on me first. She is 6. Cross your fingers that I don’t lose an ear or an eye in the process! 😱

Karen19
Member

Re: October 2020 Chemo Startersi

Hi chesterbrownbear,

 

Did you use the cold cap on your first treatment or just your second?

I have so much admiration for everyone’s choices. It’s difficult to know what to do for the best.

I used the cold cap on my first treatment and it’s just a waiting game to see what happens between now and next time.

Thanks everyone for the messages about my side effects. Most have settled down, but have oral thrush which is sore. Happy days 😂

Karen x

Not a jockey
Member

Re: October 2020 Chemo Startersi

Hi Chesterbrownbear

My hair fell out with a vengeance the day after my second chemo too.  I got my daughter to shave it off completely because I looked so awful - like some kind of medieval monk.

SU - well done for donating your hair - that's a great thing to do.  Mine was short anyway - I doubt they'd have got enough to make a wig for a hamster.

Let's hope we can all enjoy the weekend without too many side-effects.

NAJ xx

chesterbrownbear
Member

Re: October 2020 Chemo Startersi

Hi strangely upbeat, I feel exactly the same as you. I had my second session last week and braved the cold cap, but Friday my hair started falling out in clumps. I have ordered a wig just in case but I think I’ll shave what I have off. I do have quite short hair anyway but all this coming out is getting on my nerves.  
Good luck everyone and stay strong xx

Strangely upbeat
Member

Re: October 2020 Chemo Starters

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Hi ladies today is one week since my first chemo and to celebrate, I went for it and braved the shave!!! It is so invigorating and I feel so empowered, I can’t believe a few weeks ago I was freaking out.

To make the most out of a naff situation I have done something positive and will be donating my locks to the Little Princess Trust 😀 

York-75
Member

Re: October 2020 Chemo Starters

NAJ- he he, you made me laugh about all those hormones flying about! 😆

Yes I am very lucky to be genuinely interested in my job and get useful insights into most aspects of hospital treatments.

Hope everyone is ok today, I am flagging now after taking my daughter out thus morning in the rain. Curled up on the sofa now trying to keep my 6 year old distracted with an audio book of the Witches and re-arranging a dolls house into a school for hatchimals. I get to rest a bit whilst making design suggestions! 🙈

Not a jockey
Member

Re: October 2020 Chemo Starters

Yes, that makes perfect sense.  The McMillan unit where I have my chemo is in a separate building to the main hospital.  The breast unit is in the main hospital but when I had my op they were using the BMI hospital for all breast surgery.

£150 for the marker!  Wow, they intended to put one in when I had both my biopsies but there was so much bleeding they couldn't do it.  It seemed to be standard practice at my unit.  The finance of treatment is fascinating - and scary.  I'll bet your job is really interesting.  I was a teacher - I taught adolescents.  It was great when I hit my 50s because there were so many hormones flying round the room I never needed HRT.  By the end of the summer holidays I needed to go back for a fix. 😂

chesterbrownbear
Member

Re: October 2020 Chemo Starters

Hi Not a jockey, yes I’m having the same treatment as you, I’m 61 with grade 2 bc in Essex. I think believe if the bc is due to menopause they operate 1st, but if it’s other reasons they use chemo first.  Basic explanation, anyway hope you are recovering well xxx

chesterbrownbear
Member

Re: October 2020 Chemo Starters

Hi All yes I was concerned when I had my 2nd session last Thursday, the last thing we all want to worry about is coronavirus and whether it will interrupt our treatment.  My unit said that during the initial lockdown they carried on, so why would they stop this time.  My unit is lucky as it’s a separate building from the main hospital, but I think hospitals are more focuses this time to ensure treatment for cancer patients carries on regardless. Saying this though, I am worried that this may affect radiotherapy, as it is in the main hospital, but I hope not.

Who needs more things to worry about?

stay strong xxx

Allie_A
Member

Re: October 2020 Chemo Starters

There has definitely been differences in my treatment due to covid but not sure if my chemo is different than it would have been. I am having fortnightly EC and then fortnightly Paclitaxel.  The hospital I have chemo at is a smaller one (downgraded from a full hospital in recent years) that is Covid free.  

They are only cleaning my PIcc line fortnightly which they said is due to covid as its usually weekly.  Today my check in with the doctor is by phone.

I also had my surgery at a private hospital on the NHS.  I was one of the last at the private hospital at the start of September. 

They also put my marker in at the same time as the biopsy.  At the time she mentioned covid but I didn't really understand as such a stressful time.

 

York-75
Member

Re: October 2020 Chemo Starters

My unit is trying to have people come in less often if possible. So I would have been on weekly paclitaxel, but because of covid they can apply for nab-paclitaxel (Abraxane) from the cancer drug fund. This is administered 3 weekly, so I only need to come 4 times instead if 12.

during the first wave our cancer center moved to the local Nuffield hospital and we also did a lot of elective surgery there, so it didn’t have to stop. But since September the cancer services are back at the hospital. 

There has been other little changes too, to avoid people coming back so often. When I had my biopsy, they automatically put a marker into the breast at the same time in case I would need surgery. Given that not all biopsies are cancer this quite a costly way to stop people coming back- £150 a pop. I had to come back for another market anyway, as the original one was not in a good position. 

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi York,

This might be a daft question but why has covid made a difference to the chemo you are getting?  My unit said they had been able to operate as normal throughout, though I guess they might have been less busy as there was no-one coming through from the screening programme.

NAJ

whiters14
Member

Re: October 2020 Chemo Starters

Karen it sounds like your having an awful time of it. I hope they can adjust your anti sickness meds and get you feeling better soon.

I had lumpectomy first and then started chemo on the 19th 6 rounds every three weeks which is then going to be followed by radiotherapy.

ive been very lucky with the side affects my temp is fluctuating it hits the dreaded 37.5 but then drops again- I think the unit are sick of hearing from me. I feel very achy today, literally sore to touch but I may have overdone it with my walk yesterday and earlier. Trying to keep things as normal as I can for my boys but they do know that mums strong medicine may make me feel poorly and have been really good bless them. 
This group is really helping me get through this journey x

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi SU,

Fec T is flurouracil, epirubicin and cyclophosphamide (every 21 days for 3 cycles) followed by 3 lots of docetaxel.  There seem to be so many different regimes out there.  At 60 I'm post menopausal so that may have something to do with the extra one - or it could be because my tumour was grade 3 - or maybe that's the preferred option in West Suffolk.  I'm astonished at how many women are having chemo before surgery - I always assumed it was surgery first.  Once I'd been diagnosed I just wanted the op - straight away.  If I could have had it the day after diagnosis I would have done.

Hope all is going well for you.

NAJ

linflo58
Member

Re: October 2020 Chemo Starters

Hi everyone 

Karen, you have had it bad. I was diagnosed end of July, 65mm tumour HER+. I had a mastectomy mid August & started chemo 1st October. On the whole I have been good, I started to pick up on about day 7 after first chemo. However, this second bout of chemo seems slightly different. I feel shaky, tingly, sickly, all very slight, but there nonetheless. I am grateful it is not a lot worse. I was surprised how quickly my hair came out, literally fell out in clumps. Managed to brush most of it out & am going to get my husband to finish it off today. I am in awe of those of you with young children, mine are grown up, so I can focus on me 100%. I am trying to get out for a short walk each day, energy levels aren’t too bad yet. I wore my wig for the first time yesterday. I had chemo 4 years ago, so I know things can get back to normal, my hair will grow back, I will feel strong again.

Good luck to everyone.

Linda

UmLydia
Member

Re: October 2020 Chemo Starters

I have no idea. You can google EC. E is epirubicin, the red one, I think it is quite aggressive. So maybe if we start with EC then changing  to another one won't be so bad afterwards. Wishful thinking.  I will need heceptin and also hormone treatment. I read one of them will give flu like symptom aches and pains. Will have to take each day as it comes and deal with things as they arrive. 

 

UmLydia
Member

soundRe: October 2020 Chemo Starters

Hello Karen It does sound bad... I hope they can give you stronger antinausea drugs. I had bad nausea that kept me up all night after first dose but then got it under control. I have 5 different pills to take including an antipsychotic drug that also helps you sleep. Apparently they randomly found it works for chemo nausea. I only take it three days. I'm not home but will look it up tomorrow. Maybe that would help. I really slept well for the first 3 days. Not so great afterwards. 

As for not being home, I was feeling great BUT then my eye started going all nasty. I'm used to it because of the blepharitis so I did take much notice. Then it got so painful i couldn't sleep and i developed a low fever 37.8. Panic. It was really hard to find a doctor who could see me. The cancer unit were not very helpful. It was really distressing. The person who helped me in the end was a lady in the chemist who said my eye looked like it definitely needed antibiotics and gave a the number of a lovely GP who would have time to see me in a village 15 km away. (My own GP back home wouldn't do a teleconsultation. ) Luckily as soon as i took the eye drops they seemed to work, the cancer nurse over the phone told me to take a paracetamol and if the fever didn't go down in one hour then I would need a blood test to see if I needed lots of antibiotics. 

Thank goodness fever did go down and has stayed down. Phew. 

 So just to show how fragile it is really,  i had been feeling really good then all of a sudden panic about a bit of fever. And my eye was horrible. Its quite scary. 

The cancer nurse over the phone seemed disaproving i wasn't at home and said she could hear kids playing the background!!! Oh dear. Nobody said I had to stay home and lock myself in my room. 

Back home tomorrow. Kids back to school Monday. Since I started treatment they have been off so reality will kick in. 

 

 

Strangely upbeat
Member

Re: October 2020 Chemo Starters

Hi NAJ

Might seem a daft question and the answer won’t make any difference but just trying to get my head around all the different types of chemo.  Is FEC different to EC, is the F another drug?

I was originally told I would have 6 EC’s 3 weeks apart but when I went for my first chemo, I was told I would have 3 EC and then 3 something else (I didn’t take the new name in but will ask on my next round).

Thanks xx

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi Karen,

I'm on Fec T too, six cycles three weeks apart.  Like you I had a diagnosis in July, mastectomy in August and I'm now on the chemo trail.  My experience is different to yours - possibly age has something to do with it -I'm 60.  My side effects have been reasonably manageable so far and I'm sorry to hear that you have been feeling, and being, so sick.  That was my biggest fear.  I live alone with my 13 year old foster child so I was very anxious about how things would go.  My best friend and my daughter have been amazing.  My second chemo cycle has been easier than the first.  I'm now on day 7, very tired but should be on the up from now.  I felt great from day 10 first cycle. Ring your team and talk to them about how awful you are feeling, there are lots of things out there that they can give you that might ease your symptoms.  This will eventually be over.  Keep your chin up and good luck for next cycle.

NAJ

York-75
Member

Re: October 2020 Chemo Starters

Karen19, they told me that the doses work in weight bands, so depending on where you fall in the band, the sensitivity to weight change could be greater or lesser. I.e if there is a band change at 60kgs, and you go from 62kgs to 59kgs, there would be an adjustment to the dose.

I had a small but aggressive grade 3 cancer, Er+ and Her+, which was removed with a lumpectomy. I will have my second Abraxane (nab-paclitaxel) on November 6th, along with a Herceptin injection. I will have the injections for a year. I have been lucky to get the Abraxane, as it is administered 3 weekly. If it wasn’t for Covid I’d be getting the weekly paclitaxel for 12 weeks.

Hope you feel better soon! 

Karen19
Member

Re: October 2020 Chemo Starters

York-75... that’s a really good point about my weight loss and adjusting the dose for next time. I hadn’t thought of that. I will make them aware when I have my blood tests tomorrow. 
Hoping that the sickness can be sorted for next time too!

What stage are you at with your treatment? I read all 180 posts on this feed, but so much information to be able to absorb it all..! xx

York-75
Member

Re: October 2020 Chemo Starters

Karen19, you poor thing, what a truly horrific time you have been having. I’m so sorry to hear you have had to go through all that.

I am glad you have turned a corner. Please keep talking to your team, they will want to help and to stop you losing weight. Please tell them that you have, if you weigh less than you did at the start they may need to adjust your next dose so you don’t get too much for your weight. I really hope they have found something more effective to manage your nausea, so the next round can be better.

Hang in there, and thank you for telling us your experiences. Xxx

Karen19
Member

Re: October 2020 Chemo Starters

Before my treatment started I was told that everyone reacts so differently to their treatment, but it amazes just how different those experiences can be.

I was diagnosed in July followed by a lumpectomy and lymph gland removal in August. The tumour was 9mm and early stage, but tested positive for HER2. I am having 6 cycles of FEC-T each of which are 3 weeks apart.

My first treatment was a week ago and by the time I got home I had the worst nausea and sickness I had ever experienced in my life which continued for 24 hours before I had to return to hospital for an anti sickness injection and replacement fluids.

The following days were a drug fuelled haze and the nausea was replaced by splitting headaches, dizziness, sore throat, sore mouth, fatigue, raging thirst and no appetite. When I managed to have a small proper meal, I found myself crying into it 😂.

But... every cloud has a silver lining and I finally turned a corner yesterday and started to feel the side effects lessen thank goodness!

I’ve lost 3kg in one week and am averaging 5-6 litres of water intake a day due to thirst. Due to have blood tests tomorrow and will check whether this is normal.

It’s so reassuring to hear from other people in the same boat and really glad I came across this group x

York-75
Member

Re: October 2020 Chemo Starters

Oh SU, I’m so sorry you are feeling so awful. Nausea and sickness was one of my biggest concerns and I would be worse than useless if I had to suffer it. Can you keep talking to your team about this? I think they have lots of different anti-emetics and maybe there is a different combination that would work better for you?

How each of us react to treatment varies so much, and seems to be down to luck entirely. My chemo nurse said to me: please don’t suffer, call us and talk to us, we will do everything we can to make it easier. Fingers crossed they can make it easier for you, because your experience so far sounds awful.

Hugs to you, hang in there! Xx

Strangely upbeat
Member

Re: October 2020 Chemo Starters

I have been reading everyone’s stories re: first chemo and now feel up to sharing mine.  Can I say firstly that I have so much respect for all of you ladies but especially the ones with younger children, I take my hat off to you.  Doing school runs (walks) etc.  I am glad my husband and son are able to do most of my usual jobs (and think they finally realise, how hard this full time working and then coming home cooking, cleaning, washing etc fairy actually does 🤣). 

Anyway back to my journey:  1st chemo was Thursday and I was totally shocked to start feeling nauseous within 4 hours of treatment, this progressed to me throwing up every 30 mins to an hour so had Dr out for stronger anti sickness meds.  I now seem to be in a pattern which is manageable.  I feel nauseous between 4/5am so take meds, sleep is up and down all night, wake up 7/8am have breakfast then it’s an hours snooze time around noon.  Nausea mid afternoon and then a good spell between 8-11pm.  Also having loads of hot flushes and then feeling really cold. 

I am living on cereal, tuna sandwiches, croissants and fruit as that’s all I can face.

One thing that makes me happy is my new super soft pjs from Primarni.  Xx

 

York-75
Member

Re: October 2020 Chemo Starters

Welcome Karen19! 
you are in the right place, glad you could join us.

Well Done for getting the first one under your belt! Hope you are feeling ok, what kind of regime are you on? We all seem to have different journeys, some have had surgery first, some have chemo first. 
I have found this a very useful place to learn tips from the experiences of others, and it is nice to be able to cheer each other on though this strange and challenging time. X

Karen19
Member

Re: October 2020 Chemo Starters

Hi...

I have joined the site this evening and hopefully I am replying in the right place to introduce myself as a new member who started chemo on the 20th October! Have been reading lots of your posts which have been really helpful.

York-75
Member

Re: October 2020 Chemo Starters

SU, you rock!

I think that was a super brave thing.  I was so relieved I don’t need to do thus on my regime, so huge respect to you and the others who have to be so very brave. 😍

LouJP
Member

Re: October 2020 Chemo Starters

Hi

I am not part of the October 2020 starter as such but keep up with all the various messages and hope you don't mind me dipping in on your giving yourself your first injection - mine was back in February and I continued for the 6 rounds of chemo I had - it wasn't the easiest thing to do but sometimes thinking about doing it was harder than it was - I used to on average have to inject for 7 days and had a piece of paper by the fridge (where they were kept) that I ticked off each day and then gave a little cheer as the last one of each cycle was finished.

Taking the sharpie box for disposal at the end was a joy.

Hope they go ok.

xx

 

Strangely upbeat
Member

Re: October 2020 Chemo Starters

I did what I think is my first brave thing today (had the op, had first chemo, been ill etc) but today, I have given myself my first injection, phew!!! I think my next brave is going to be booking the shave and hopefully donating my hair to the #littleprincesstrust

UmLydia
Member

Re: October 2020 Chemo Starters

York-75 was going to shave my head then decided to wait and see. I had long hair and decided to style it myself, since it will all fall out. I have been chopping away giving myself new looks, its quite fun, in a "who cares" kind of why. I bought loads of headscarfs and have been practising and found some nice headwear. 

Unfortunately where I live we have to wear face masks outdoors. During lock down I got blepharitis, its a problem with eye lashes, so i can't wear make up or contact lenses. My eye gets all gungy. Which isn't a big deal but makes looking attractive options limited ha ha ha. But for my little girl i will do my best. 

UmLydia
Member

Re: October 2020 Chemo Starters

Hi Whithers14

Yes I had EC as well. I'm feeling much better. I don't think I can hide feeling bad from the kids. I explained to them that to get better the doctors needed to give me some very strong medicine that would make me feel very tired and sick. The good side is I am off work so will have more time with them. It seems very roller coaster like, so have to make the most of good days.

I didn't cold cap, I live in France and they don't seem to do it here. 

I am trying to go for a walk every day, luckily we are having a break at the sea side and the air is making me feel great and going for walks as well. 

Kids back to school next week so see how long it takes before I need to wear headscarfs etc. New look. Unfortunately we also have to wear compulsory face mask outdoors. Sometimes i think I might as well buy a burka. Not for religious reasons obviously just as a fed up statement. 

When do you have next treatment? 

Take care 

Shi
Community Champion
Community Champion

Re: October 2020 Chemo Starters

Keep eye on mouths for thrush too, it’ll need antibiotics, difflam can help with mouth sores but do phone your units and check symptoms with them always ❤️ They can help keep you safe through chemo. Remember during chemo everything is not like normal you need to check with your units about everything 👍👍please keep safe ❤️💕💕Shi xx

whiters14
Member

Re: October 2020 Chemo Starters

Hi Umlydia

It sounds like we are in a similar position I had my first session on Monday last week, the red one too EC I think they called it. Similarly to you I was very tired the first few days but then started to feel better. I had a real wobble on Friday and phoned unit i have never felt my body ache so much that with a slightly raised temp and being a worrier tipped me over the edge. The unit were lovely and said it was a likely reaction to the jabs. Today I am feeling pretty much like myself.

trying to hide feeling poorly from the kids is what I’m struggling with but like you my husband has been fantastic keeping them busy.

Did you cold cap? I did but I think some hair starting to come out today hopefully not too many 🤞.

I’ve been doing salt water mouthwashes to help with the mouth sores but the dry throat thing feels strange. 

Hope you are feeling okay this weekend take care x

York-75
Member

Re: October 2020 Chemo Starters

Well done NAJ for getting the second one done! I am nervously waiting g fir my hair to start falling out. I think I’ll have to shave it number2 straight away, I think watching it come away in chunks would be harder for me.

But you are there now, and got over another hurdle!

 

UmLydia, glad you have found us here! I have a 6 year old girl, and I can relate to wanting to look normal for her.

I have a wig, but also found some soft ‘hats’ from annabandana which look nice- I figure I could still wear them with some earrings and a touch of makeup.. I haven’t worn any since March! At least there isn’t many chances for me to embarrass her, since we are mainly at home! I best make an effort for the school run or send daddy! 😆

I too had my surgery first, so I’m not sure how fast a tumour could shrink, but I hope it is shrinking already, and that this regime you are going through will blast away at it so there is less to operate away. Xx

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi UmLydia,

Get your GP to give you a prescription to deal with the heartburn/acid reflux.  My GP prescribed Omeprazole and it's been fantastic.  One tablet a day until I stop chemo. 

Feeling nauseous must be the worst.  This is a tough call with kids to consider.  The red chemo was probably epirubicin and it's pretty toxic so they give it first. 

I know what you mean about getting started.  The waiting is tortuous.  I had my op first and I find it interesting how different everyone's experiences are.

NAJ

UmLydia
Member

Re: October 2020 Chemo Starters

I started chemo last week. I am 42 have Her2 postive, hormone positive cancer lump in left breast and at least one lymph node. I have 3 kids under 10. 

I slept for two whole days and nights after a first evening feeling very nauseous. So that wasn't too bad. Luckily my husband took the kids out most of the time. I think I am starting to have piles (never had one before), feel a bit bloated, will try to drink loads more water. I don't feel too tired, the doctors said it is really important to walk and stay active (couldn't the first couple of days i was knocked out sleeping). I had the red chemo and another one, I think quite strong. 

I have painted my nails bright red and obsessed for hours over head ware, I don't want to wear a wig. Hair should start to fall out next week. I don't really care as long as the drugs work. My 5 year old daughter is very upset that I will lose my hair and has asked me if I can wear make up and jewellery to look pretty with my headscarf. Ahhh. Its true for years I haven't made much effort with young kids. Will have to start now. 

I have another 5 months of chemotherapy mixed with the drug for the HER2 protein and hormone therapy, then will need a mastectomy, then radiation . 

I actually feel quite hungry after the first few days of feeling not great. Also was craving protein. Is this normal? 

Also when I swallow it feels a bit sore and need to chew a lot, have a kind of heart burn and have some mouth sores forming. Its nothing dramatic but since its only the beginning hope it won't get much worse. 

Once you start chemo you don't see the doctors much, I had got used to going for all the tests etc. 

I get the impression the tumour is already shrinking, is that possible or just wishful thinking? Makes all the side effects worth while in any case. When I was sitting having my chemo I was more relieved than anything. I had to wait weeks and weeks while they did all the  tests and just wanted to start getting better. 

Not a jockey
Member

Re: October 2020 Chemo Starters

Well I had second chemo on Wednesday and on Thursday morning my hair started to fall out rapidly.  On Friday I had a hideous look where the top of my head was completely bald but I had hair left all round the sides and back.  I got my daughter to shave it off completely and I feel much better.  I got some coconut and argan oil to rub on my head but it's like concrete - had to use a spoon to get it out of the jar.  It was like crayon shavings so it was a bit of a laugh waiting for it to soften so I could apply it.

Anyway I went out shopping and to the allotment in my new wig and people were very complimentary which was a bit of a boost.  Once I knew I was home for the day I took it off - but you do notice the cold!

My daughter says she prefers the 'bald' look to the previous 'skinhead'.  Now where did I put that rubber stamp that says 'Best Before 2020' ........

Take care everyone xx

Shi
Community Champion
Community Champion

Re: October 2020 Chemo Starters

Hi withers no harm in checking temperature as much as you want and it’s good you are and being vigilant don’t forget even with no temperature if wee burns then rapid response it and same for thrush mouth or thrush down below too (chemo can cause this) keep safe 💕💕Shi xx

York-75
Member

Re: October 2020 Chemo Starters

Withers14 I’m sorry you are feeling exhausted. I am OK first thing and then progressively worse from 10.30 onwards. At 8 I could go the school run (walk!) and I took a short drive and if one errand after. At 1pm I walked round the block and felt exhausted and really dizzy. Funny how it affects us all differently and st different times of day. I hope you get a little bit if ‘normal’ time too, gives a boost to feel able to do things even for a short while.

 

I don’t think there is a rule about temp.. I take mine first thing, then only measure again if I feel different in any way. First 2-3 days I probably checked every couple of hours, now maybe once in the morning and once later in the day.

I hope it settles down for you. Xx

whiters14
Member

Re: October 2020 Chemo Starters

Glad you’re feeling ok after your first session. It’s good that you’ve managed some cooking. I haven’t managed to do a morning school run as feeling very tired in the mornings.

Has anyone else got thermometer paranoia? How often should I be checking my temperature. Mine is fluctuating and I phoned the unit as it was 37.5 but I was using my own ear thermometer (which I think I’ve overused giving myself a bit of a blocked ear) I knew my excessive worrying would affect this.