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Anyone starting Chemo in December 2018?

DiKat
Member

Re: Anyone starting Chemo in December 2018?

Hi Trixie, Jayne1966 & everyone. I’m due my second FEC on 9th Jan(delayed by 1 week due to being hospitalised with neutropenic sepsis and what seemed like every possible side effect) so feeling really anxious. I just wondered how everyone copes with being around people with coughs/colds which seems inevitable at this time of year! I feel like locking myself away for next 3 months which I know is not practical.
Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

Should say Trixie not triple. Damn autocorrect!!
Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

Hi triple, I'm about to have my second round of chemo on Monday. FEC at the moment. Hair is almost all out. Feel fine now but I know come Monday evening I will feel awful again. Found the first round really frightening so hoping that is easier this time. Hated the injections more than anything. Just want the whole thing to be over!
reddi
Member

Re: Anyone starting Chemo in December 2018?

@Jayne1966 If you are on a desktop, you might try the pull-down menu "Thread Options," located next to the "Reply to this Thread" button at the top of each page. The default option is usually "Sort Newest to Oldest"; if you choose "Sort by Threads," some of the messages will make a bit more sense, as a person's reply to a particular message will appear beneath it -- but keep in mind that "Sort by Threads" goes Oldest to Newest, so the new messages will be on the last page (page 12 as of today). I still find it confusing, since my browser doesn't stack / indent replies, which means trying to figure out from context what constitutes a "new" strand within the thread. That's why I tend to pseudo-tag people's names at the start of my posts -- though that's not always clear either.

Trixielady
Member

Re: Anyone starting Chemo in December 2018?

Hi Jayne 1966 I've been having the same problems but I think I'm beginning to learn how to use it , following the email and the section and time , the email says where the post is with dates & times XX hope you are ok ? Where about are you with your treatment ??xx
Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

All,

 

I'm really struggling to fllow te conversations in here as it all seems to be mixed up and coming in order of posting, so i see a reply to something posted earlier mixed in with new posts and other replies and its hard to follow a single conversation. Is there some way of making the site easier to follow ? Any advice welcome - so longas I can find it !! Smiley Very Happy

rhubarb
Member

Re: Anyone starting Chemo in December 2018?

I couldn't plan ahead either which was a pain but you just have to put up with it whislt going through chemo. I used to think of the cycles in fractions. Having 6 cycles meant that once I'd had my second lot I was 1/3 of the way through. Try to think in positive terms.
It takes a few months to get your head round it but you will. There is not othr choice.x
Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Hi gocat. My Practice Nurse flushes my PICC line. Round here if you’re able to get about the DN’s won’t come out. I go to the Chemo Unit for pre chemo assessment and they take bloods then

Jencat
Member

Re: Anyone starting Chemo in December 2018?

Hi gocat, so sorry to hear that you're feeling so nauseous and hope you feel better very soon. The sea sickness bands or travel bands can be bought from the chemists. They are usually used to help with travel sickness, but they were recommended to me for chemo  xx

DiKat
Member

Re: Hi everyone

Thanks for your support. It is much appreciated. I thought I’d posted this in the Dec 2018 thread but obviously I’ve done it in the wrong place.
rosie14
Member

Re: Hi everyone

Hi I am so sorry that you have been so unwell at the onset rest assured that the chemo team will do all they can to avoid these symptoms happening again!

Please join the Dec 18 chemo thread where you can make this journey with others on a daily basis that will be undergoing the same treatment and feelings as you! You will be stronger with others who understand exactly what you are going through!

Good luck, you will come out the other side! 🌸

gocat
Member

Re: Anyone starting Chemo in December 2018?

Spoke too soon.  Nausea again.  I took a 

Motilium 10mg tablet.  I got some prescribed for PRN (when necessary) but not sure how long to take them for i.e. how many days.    I know not more than 3 in 24 hour period.  Seems to have taken the edge of it anyhow.  I was taking up to 3 a day in the few days after chemo. Can I continue doing that if necessary.  

gocat
Member

Re: Anyone starting Chemo in December 2018?

Hi all,  I've been advised to get a Picc line and waiting for a date to go to my local hospital for. But I was told district nurses will come round once a week to flush it and to take me bloods from it pre chemo.  Anyone else get this?  

Day 5 from chemo and nausea not too bad today.  

What sea sickness bands do you get Jencat 

Jencat
Member

Re: Anyone starting Chemo in December 2018?

Jayne, I'm so glad my little bit of info helped you. I was really nervous about having the line fitted, but it was fine and it didn't take long to get used to it. I found the bandage they put on a bit of a nuisance at times-one size was a bit loose and the other a bit tight at times, but there have been some suggestions on here about how to get round that and you can buy covers if you don't want the bandage. I didn't bother to as I was going through chemo during the Autumn and Winter.

Also, not sure if I've mentioned this anywhere, but I wore the sea sickness bands during chemo and for a few days afterwards and wasn't sick at all and only felt a nauseous once or twice. It might have just been a coincidence, but I felt the bands helped xx

Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Hi Rhubarb.  I have other health issues but am trying to do some walking. Though over Christmas I have had to rest up. I’m learning not to plan too far ahead and take each day as it comes. 

 

You have certainly been through the mill. I am glad you have come through it. I do feel that my life has changed forever.  Trying to get my head around it all still

Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

Nanna J, my head feels exactly the same, like I've had my hair tired up really tight at day and just fallen it out. Is really thin now. I've lost about two thirds I think. I will shave it and have a mohekan for a day I think. Id never do it otherwise so why the hell not?
Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

Jencat, that info about your PICC line had made me feel so much better about having one fitted
rhubarb
Member

Re: Anyone starting Chemo in December 2018?

Go for it if the veins become harder to find.

I had mine for cycles 5 & 6 as by then they were struggling to find the veins. It was much quicker for administrating the chemo and less painful as they weren't puncturing in search for veins anymore.

However, the thin line can be a little irritating but this can be mitigated. 

rhubarb
Member

Re: Anyone starting Chemo in December 2018?

Love the football sock idea. Think I put a square padded bandage across mine and held it in place with surgical tape. But mine was on the chest.
I had a cold cap too and believe it has to be for all cycles. Retrospectively I'm not sure I would opt for it again. I still lost most of my hair but it did mean I had a little bit of a head start when it began regrowing.

rhubarb
Member

Re: Anyone starting Chemo in December 2018?

Drummerswidow,

Do what you can but be prepared that there will be periods where you have to stop, leave it alone, rest and put yourself first regardless.

I did find I could exercise. I cycled which gave me the freedom to go at my pace and not come into contact with too many others. Swimming was forbidden by the oncologist. I also walked a lot.

 

I had 3 breast cancer ops including a mastectomy. FEC-T chemo with a pict line for the last 2 cycles, radiotherapy, 3 reconstruction ops. and Anastrozole / Arimidex with calcium drugs for 5yrs. Have just finished the drugs. So in theory on my way back to normal. 

 

It is a long journey with ups and downs along the way. Life is never quite the same again. As somebody said to me when I began my journey 'you now belong to an exclusive members club'. Dig deep, have the courage and challenge yourself, you can and will do this and come out a stronger person for it.  

Jencat
Member

Re: Anyone starting Chemo in December 2018?

Hi maryKamille, just wanted to give you some reassurance re having a PICC line. I'm from the Oct '17 group. I had a PICC line throughout my chemo and I didn't have any problems with it at all. I was nervous about having it put in, but I didn't feel anything and having it removed was even easier (only took about a minute!) It was a bit of a pain at times having to keep going to the hospital to have it flushed, but on the plus side I found it quite reassuring to see someone in the chemo unit regularly.

I bought a plastic sleeve from Boots (It was about £5) so that my arm didn't get wet in the shower x 

Nellie McNelly
Member

Re: Anyone starting Chemo in December 2018?

Hi Nanna J - I, like you had my first chemo on 20 Dec and am due session 2 on 10 Jan.  I'm also wobbly about the whole hair thing.  I've got a couple of beanie hat things - but they look a bit bonkers on me to be honest.  I've got a wig - which would be fine if it was just for messing around but I'm not sure how great I'm going to be with it as a medium term replacement for my hair!  I've also got a couple of scarves but, again, I'm going to have to gain some self-confidence to be OK with those too.  I KNOW it's only hair but it's really difficult on top of everything else - I had a mastectomy with a temporary implant in late October and had to go back to surgery to remove a haematoma in mid November and I then had a port inserted 2 days before I started chemo so my body still feels pretty hammered by all that.

 

That all sounds really negative - to be honest I've been kind of more accepting about the whole thing since Christmas - but even on "positive" days this is all still really awful!!!

 

Hugs x

 

 

maryKamille
Member

Re: Anyone starting Chemo in December 2018?

Many thanks will be onto that!
maryKamille
Member

Re: Anyone starting Chemo in December 2018?

Thanks reddi will have look at those. I was wary of PICC line because it seemed people had problems keeping them in place. Also, constant reminder of what we are on!
maryKamille
Member

Re: Anyone starting Chemo in December 2018?

That is how it should be and very pleased for you. At least I haven't had that worry and it must have been really tough with all the other things you are going through.
Nanna J
Member

Re: Anyone starting Chemo in December 2018?

Hi Drummerswidow

I had my first chemo on 20th December next one due 10 Jan., I have a lot of really thick hair but today I noticed the top of my head feels tender (like when you have your hair tied up all day then let down). 🤞 I have it a little longer, not really got my head around this part of my treatment yet, getting there if you know what I mean (have not choice🙈). Have you decided on a wig or just head gear or both? I was just going to have head gear as did not fancy a wig, but have found one this afternoon that looks very similar to how I use to have it a few years ago before I decided to grow it, so may invest just for the odd occasion I fancy dressing up (my husband thinks I will feel better if I have one too). Seeing you big Huggs and wishing you a happy & Healthy New year xx💕💕
Jennie1966
Member

Chemotherapy and Liver disfunction

Hi. I had my first round of chemo 3 weeks ago and have been for my bloods taken today in preparation for my next round on Thursday.
I have been informed by oncologist that my bloods show liver distinction due to the chemo and have had my next round put back to next week after having mire blood tests.
I'm on docetaxol, carboplatin and Herceptin. I just wonder if anyone else has faced this?
Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Fluffysunshinepants. That’s such good news for and has taken a weight off your mind. I’m so pleased for you xx

Fluffysunshinepants
Member

Re: Anyone starting Chemo in December 2018?

I had a good old cry when my work contacted me to say that i had been taken off sick leave and placed on ammended leave, meaning that i would be paid whilst receiving treatment. Although i had tried to put money out of my mind i couldn't help but fear the worst and feel so fortunate that this is no longer a consideration
Wahini
Member

Re: Anyone starting Chemo in December 2018?

Hi all, hope you are all wel. Next year we will finish what we started.

 

Thanks for the info about working or not, I am currently having holidays and some days I think "yes I could work" and other days I am too tired. I enjoy my work but hate the open plan office. To be honest, I would like to do a 'Kylee' and disappear for half a year or so. However, I am the breadwinner and cannot taken endless days off. I was selected for jury duty in January but I applied for (and was granted) exemption because I don't know if I will be well enough and then there is the infection risk. I would have been interested to do it and hopefully there will be a next time.

 

About my hair, when I pull at it it comes out so I buzzed it off. To 3 mm to begin with and it actually suits me, I think. It feels kind of refreshing. I have to remind myself that It will look different when I go truly bold.

Mai7
Community Champion

Re: Anyone starting Chemo in December 2018?

I hope 2019 is kind to you. xxxx

 

HappyNewYear.JPG

reddi
Member

Re: Anyone starting Chemo in December 2018?

On the hair front: I found this scarf-tying video quite clear. It is on a site that sells various headwear, but no need to buy their scarves in order to use the advice! I'm lazy, so during the first two cycles of chemo this summer, I tended to just tie a kerchief over (first) my thinning bob and (then) my DIY pixie.

 

I got a lovely wig from Trendco, which my hairdresser trimmed a bit for me, but I mostly use it on very cold days -- extra warmth -- or during video calls and meetings for work, primarily because I was never one to style my hair, and every wig is far more polished-looking than either my OH or I are used to. (My hairdresser advised artificial hair as natural hair can be more itchy; I also read that long hair wigs of artificial hair are more likely to fray from contact with necklaces, etc., so went with a bob.) 

 

Once all my hair was out, I ended up being more of a beanie girl -- my mother is a quick crocheter (I'm a very slow and new knitter), and whipped several up for me in a couple days from cotton yarn, as I have a slight wool allergy. She found quite a few patterns via the Knots of Love site, for anyone interested in this option. Depending on the color of yarn you choose, these patterns can look quite "modern"/hip. I like these better than jersey beanies, as the patterns provide some texture.

 

I think it really helped me that I found a look that felt like me, even though it was nothing like my pre-chemo hair style. Keep experimenting til something feels right.

 

And my hair started growing back after I switched from FEC to T, so now I have a growing buzz across my whole scalp after being completely bald. But I love my beanies.

reddi
Member

Re: Anyone starting Chemo in December 2018?

@maryKamille Laxidol powders sound great -- a really good pointer for your fellow December starters. (I'm a June 2018 starter, now finished with chemo and healing from surgery; still getting Herceptin, though, and now waiting for my pathology results so that we can confirm a plan for radiotherapy, with hormone therapy after that.)

 

I didn't get a PICC line, but quite a few June 2018 starters sing their praises and have shared advice on both the June and October 2018 threads. Do feel free to pop into either of those threads to ask about their experience. 

Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Hi Fluffysunshinepants. I’ve got a PICC. Going to drs this afternoon to have it flushed and redressed.
Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

MaryKamille. Sorry your hair is coming out 😟😟. The videos are on YouTube. I did a Google search for scarf tying for chemo or something like that. Some are American but there are some ladies in the UK who have done some.

DiKat
Member

Hi everyone


I’ve been hanging around for a couple of weeks but this is my first post. I was diagnosed 14/11 Her2+and multiple lymph nodes affected. Having chemo first 3 Fec 3Thp. Had 1st Fec 12/12 & hate to sound negative but not had a great time since. Felt nauseous and spaced out for several days and admitted to hospital with neutropenic sepsis(neutrophils 0.03) day 9 20/12 and despite having 5 filgastrin injections days 3-7. My mouth & throat were a mess, thrush sores & had intense burning in chest and back from mucositis. Have lost a stone in weight since diagnosis and can’t afford it as slim build anyway. Discharged from hosp Christmas Eve fortunately but felt very anxious obsessing over my temp which was only 37.2 orally when I was neutropenic! Started to feel better last couple of days but 2nd chemo is being delayed a wk, now 9th Jan and think dose will be reduced...more anxiety. Hair started coming out rapidly day 17 so went for the shave day after, 29th Dec. I have a wig, named her Miranda, no idea why ha ha. Went to a small get together wearing it yesterday but made me feel hot so revealed my Sigourney Weaver which was well received. I’ve found it supportive reading your posts so thank you ladies. Onwards and upwards x
maryKamille
Member

Re: Anyone starting Chemo in December 2018?

Mine's coming out in handfuls too, angelblue but I haven't got the wig out yet - still in its box. I really thought it was pretty, but it's the waiting for all the hair to go which is hardest and no doubt that first look at your own bald head! What's this scarf tying video by the way - as I don't want to wear the wig indoors necessarily.
maryKamille
Member

Re: Anyone starting Chemo in December 2018?

Hi reddi Just to let you know that I had problem with constipation for first 5 days of my 1st cycle and GP gave me gentle laxative - Laxidol powders. Come in sachets and dissolve in glass of water - taste pleasant. Also, drink lots of water anyway. It sorted me out in no time. I've been advised to start it up again on very first day I have my next Chemo session.
Fluffysunshinepants
Member

Re: Anyone starting Chemo in December 2018?

Morning, i'm due to have a Picc fitted prior to my next chemo, the procedure is undertaken to protect the veins due to the toxic nature of the meds.

Although a pain with weekly line care etc. For me it's worth having done, my veins are quite fine apparently
maryKamille
Member

Re: Anyone starting Chemo in December 2018?

Thanks rhubarb, I've been reading reddi's advice, too. My oncologist insists it is nothing to do with Chemo!
maryKamille
Member

Re: Anyone starting Chemo in December 2018?

It's probably shock, Jayne. I think we all experience it but don't realise that it can last quite a while.
Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

Interesting about the PICC line. They struggled to find a vein for my first session and have advised I get one put in. Any advice on this as I really don't know whether to or not
Daffydilly
Member

Re: Anyone starting Chemo in December 2018?

Hi all,

wishing you all a happy new year.

 

Thought this might help someone - I was finding keeping my PICC line in place really irritating until my son donated some old football socks - cut off the ribs at both ends and the middle bit grips enough to stay in place without being too tight!

Im on fec-t, second fee on the 3rd Jan. Dreading it now although only minor side effects last time(apart from being sooo tired!) Cold capped for 1st one but not sure what to do now. Is it necessary for all six sessions or just the fec ones?

Drummerswidow
Member

Re: Anyone starting Chemo in December 2018?

Hi Rhubarb. Sound advice. I’m self employed so no work no money! I’m trying to do a bit while I can.
reddi
Member

Re: Anyone starting Chemo in December 2018?

Thought I'd chime in to offer some thoughts on working, particularly as chemo can affect people differently. I had 3xFEC followed by 4xTPH (docetaxel plus HER2 antibodies) and was able to work at about 60% to 65% throughout. Both my OH and I are freelance and I am the bigger earner, so not working wasn't an option. In fact I could have worked closer to 75% to 80% but for all the appointments and the time I spent researching surgery and radiotherapy options and tactics for reducing side effects. (I had chemo before surgery and was diagnosed with bilateral breast cancer, with different tumor types in each breast, so a lot of things to weigh.) It helped that I work from home, so working didn't entail exposure to people during my white bloid cell trough. However, at least one other person in the June 2018 starters group worked the whole way through, taking just 2 days off each cycle (including infusion day). It depends on your response to the drugs and the work you do.

I personally never felt I experienced chemo brain fog. (I'm a book editor.) I also was able to take 5 to 10 mile walks on the second and third weekends of each cycle -- and I think getting this exercise helped me with fatigue of all sorts. Of course, I also paced myself, and I was more fatigued in cycle 7 than, say, cycle 3 (during the third week of which we went hiking in the Wye valley!).

My breast care nurse gave me some guidance on mouth care during chemo. I ended up having no mouth sores or teeth/gum problems at all, though it is hard to know if this regime was why: She advised buying (extra soft) baby toothbrushes, one per week; I bought 2 and boil-sterilized them instead. Then gently brush after every single meal and snack using children's sensodyne toothpaste -- nothing with whiteners. Rinse mouth with water before brushing, to help dislodge big stuff; then after brushing use either Corsodyl or bicarbonate of soda dissolved in warm water as a mouthwash. I also very gently flossed when needed. (One thing I learned: if using Corsodyl regularly, either cut out tea and coffee or be prepared for very stained teeth. I am shocked by the stains I got -- when I had none before. I'll be asking at my next post-chemo appointment with my oncologist if I can now use a whitening kit on them!)
Jayne1966
Member

Re: Anyone starting Chemo in December 2018?

Trix, waiting is definitely the worst part, although for me its been a whirlwind. Mamogram call back and biosies, week later diagnosis, 2 weeks after that and I'm having Chemo. I still have not taken it in at all. I'm sitting here watching tv, running my fingers through my ever thinning hair with almost no emotion at all regarding the cancer. I have no idea how I'm supposed to feel. All the posts on here seem angry or scared, I'm just numb and empty.
Trixielady
Member

Re: Anyone starting Chemo in December 2018?

Haha no change there then , positive thoughts to you and all the lovely ladies or men out there it's good to hear from you all about your experiences , I'm at hospital again tomorrow looking forward to seeing my boobie start to reappear , no sure what that entails but onwards I go X night night
rhubarb
Member

Re: Anyone starting Chemo in December 2018?

Mary,

Watch your teeth. Take extra care. I had a lot of treatment during and after. Sorry but chemo will impact them.

 

Rhubarb x

rhubarb
Member

Re: Anyone starting Chemo in December 2018?

Forgot to say...

You will almost certainly get chemo brain for quite a while after - not painful just a bit foggy, vague and forgetful.
You will also feel very tired for some time after too. So pace yourself and sleep when you can.

rhubarb
Member

Re: Anyone starting Chemo in December 2018?

LOL