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April 2019 Chemo Starters πŸ’–

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Re: April 2019 Chemo Starters πŸ’–

stick with it ! Day 32 two FEC and still got pretty full head of hair ... the first 10 minutes are vile but once through pain barrier doable 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Mominette   i found cold cap ok.  weird to start with but doable.  I had a reaction to docetaxol tho and only completed about half the treatment, so cold cap came off early, not sure if i'll manage to keep my hair only time will tell.  Day 12 of cycle 1 for me-   nasal drip has stopped, burps and wind have eased so feeling much better today, a bit more human.

Herceptin/pertuzumab / docetaxol  HER2+.   Feeling yeah i can do it.  We all can!!!!   

Al

Member

Re: April 2019 Chemo Starters πŸ’–

I have had to really force myself some days but when I go out and get some fresh air I always feel so much better x

Member

Re: April 2019 Chemo Starters πŸ’–

Thank you. I only wish I could find the energy to go for a walk. I find it hard enough to hold my head up off the pillow.

 

Think I may need to have a chat with myself x

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Zoe just popped in from Feb thread.  I have now had 3 FECs and it is horrible but doable.  Just make sure you drink loads of water and do lots of walking.  It flushes the toxins out of your system.  I suffered terribly with nausea so I know how you feel but you can do it xx

Member

Re: April 2019 Chemo Starters πŸ’–

Day 5 on first round of FEC.....

 

Well I can honestly say the fatigue is far worse than I imagined. The sickness came within a couple of hours of being home. Starting to think I cannot do this and I'm not strong enough. I cannot even be a decent mum to my 7year old twins. Everyone keeps saying things will improve daily but its hard to keep a smiley face.

 

Zoe x

Member

Re: April 2019 Chemo Starters πŸ’–

I’m currently sat with one on my head! The first 10-15 mins are a little painful but not unbearable. X

Shi Community Champion
Community Champion

Re: April 2019 Chemo Starters πŸ’–

Pollensa you made me 😁sound like I was treated it like a military manoeuvre, the full schebang ready to πŸ₯ŠπŸ₯ŠπŸ₯ŠπŸ₯Šit for six πŸ‘made it easier to keep track as the chemo brain took hold πŸ™„πŸ’•πŸ’•βœ¨βœ¨Shi xx

Shi Community Champion
Community Champion

Re: April 2019 Chemo Starters πŸ’–

❀️❀️glad you’ve found braving the shave liberating ❀️❀️it’s stange how it makes you feel like you’ve taken a bit of control back isn’t it, emotional and think we all have a 😒as we do it, but it is empowering πŸ‘πŸ‘ladies coldcapping, the ladies who coldcapped on my thread only washed their hair once a week, if you start getting flaky bonce then let your team have a look, they’ll prescribe you something, one of the ladies had her chemo delayed till it cleared up as they can’t risk infection. πŸ’•πŸ’•βœ¨βœ¨Shi xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hello

How have you found the cold cap?

I start chemo this Thursday.

Mominette Smiley Happy

Member

Re: April 2019 Chemo Starters πŸ’–


@Hannahlizzy21 wrote:

I’ve had some hair loss but not much at all. Currently on way to chemo number 2, and I will definitely be cold capping again πŸ₯Ά. But even if it falls out, it’s not the be all and end all x



Totally and though am thrilled to have got past chemo  2 and counting with most of hair still there it has thinned and by the end I expect what is left will look pretty rubbish but at least cold cap also means hair will grow back quicker and avoids the trauma of total hair loss . 

Member

Re: April 2019 Chemo Starters πŸ’–

I’ve had some hair loss but not much at all. Currently on way to chemo number 2, and I will definitely be cold capping again πŸ₯Ά. But even if it falls out, it’s not the be all and end all x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Louise, 

 

Glad to hear from you. No, not really sickness. The multitude of anti sickness tablets they give you has helped me in that regard. No, I felt a bit shaky and just weird. My blood pressure was quite low but that's come up as the day has gone on. At the moment I'm just so hot. Windows open , fan blasting out and summer duvet . My English teacher always said, horses sweat, men perspire and ladies glow. Well, im glowin' like a horse!

 

Susan aka pollensa

Member

Re: April 2019 Chemo Starters πŸ’–

Braved the shave today, day 20 cycle 1 and feel so much better xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hiya

my hair loss started on day 15. I am day 19 now and have shaved it off, as it was just falling out when touched. It had got really patchy. I feel much better now it’s shaved, but was emotional when it started to come out.

x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Pollensa

 

Sorry to hear you are feeling poorly - please do you mind me asking in what way.  Is it sickness?  I had that a lor last time.

 

You sound so organised,  I think I will try ti be toi - it will help me keep everything in order.

 

Hope you start to feel better very soon

Louise

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Christine,

 

The MacMillan demystifying course I went on said not to eat a range of things including soft cheese and shellfish. There were loads of dos and don'ts. However, my oncologist said the only one to stick to closely is no shellfish. 

hth.

How is everybody doing with hair loss? I'm still waiting for it to start... day 15 tomorrow. Watch this space! 

Sharon

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Louise,

 

So sorry to hear bc has raised its ugly head again. But you're right, things are very different and so much more advanced from even 5 years ago. My bcn said that when she started she pretty much knew exactly what treatment would ge given but now theres so many different options. Yes there are still side effects of chemo but the pharmacist impressed on me that that there are drugs for every thing!

 

Mind you this is only my 2nd day after 1st chemo and I'm feeling a bit poorly so what do I know!!! 

 

Before I retired I was a librarian so like to think I'm organised. All my drugs are lined up, drug chart all noted up, thermometer and blood pressure machine at the ready, wee hats not needed yet ( thank goodness), scalp moisturiser holding down chart...........all gives me something to do I suppose!

 

Have a good Easter Monday.

Member

Re: April 2019 Chemo Starters πŸ’–

Hi I'm new to this site.  I've got breast cancer for the 2nd time.  1st time was 15 years ago.  A real shock to have it again.  Have had op 2 weeks ago and have been told I will be having chemo.  

 

Having read all the posts there seem to be so many different types of drugs etc.  Dont remember that from 1st time around.    Obviously a lot has changed over the years.  I thought I knew what to expect, but now I'm not so sure.

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi christine, I had chemo this time last year and through the long hot summer and was advised to wear factor 50 and stay out of the sun as much as possible. I used to sit in the garden but under the parasol. X

Member

Re: April 2019 Chemo Starters πŸ’–

Hi lindylou,

I was advised to take my steroids in the morning as they can stop you from sleeping. Although these are tablets not injections so might be different? Also, I’ve had trouble sleeping anyway even when I’m not taking the steroids. 

 

Hope people are managing to enjoy the sun. Does anyone know if we need to be careful in the sun during chemotherapy? Also has anyone been advised about what foods to avoid? I’ve not been told but read places that I shouldn’t have shellfish or uncooked fish like sushi or smoked salmon. Is this true? 

 

Happy easter

x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi 

Had my first chemo on Thursday, so far no major side effects. Take me first steroid injection today and noticed some of you have had problems after. Wondered if you had been advised to inject on a morning as I discussed with my chemo nurse and agreed after tea would be fine. Might be worthwhile checking if you can change to later in the day so any side effects you can sleep of and hopefully feel better through the day. Also was advised as soon as I feel nauseous to eat something which I have found works well for me. Reading through some blogs I also found others recommended sparkling water, elderflower cordial and both together, so have some waiting just in case.

 

Hope this helps

Member

Re: April 2019 Chemo Starters πŸ’–

Welcome Pollensa!

 

Glad it all went well. I think one thing you will find from this board is that we all experience our side effects in different ways! Hope yours aren't too bad. We are here when you want or need us :-)

Just also to say I don't do much physical activity beyond working with children! lol. We try to get out and about to walk a bit each day but that's it really. I haven't got into the habit since starting a new (all-consuming) job so don't feel bad. 

Happy Easter everyone.

Sharon 

Member

Re: April 2019 Chemo Starters πŸ’–

Shame you didn’t get to the run Sue but as I’m sure you know there will be others. You are wise to rest when you need to. I was told when going through chemo to make a note of how I felt each day because se’s tended to follow a pattern through every cycle, it was good to know what was coming and at what point I would feel ok. 

Well done to your friend, it is thanks to people like her that research has helped us! 

I hope you continue to feel better and enjoy the sunshine this Easter x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi michelle

I didnt make it to the easter bunny run today as i was still nauseous and tired from yesterday but ive felt a lot better today  managed to get out of my pj's and into the garden which was so nice to sit in the sun and relax.  Not sure if this is a pause in my side effects, after feeling rotten for 3 days, but it did surprise me to have side effects within the first 12 hours.  Anyway tomoro im off to watch my friend "brave the shave" - she has raised over Β£500 so far!! Hope u have a lovely easter weekend xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone,

 

Didn't want to intrude until I'd had my first chemo! It all went very smoothly and efficiently today. Appointment  was at 2 and out by 4.30pm. Just waiting for side effects to kick in now!  Getting hair shaved and wig fitted next Wednesday. Maybe a bit previous  but I want some control back.

 

Very jealous of anyone that can walk miles each day. I could well believe that will help both physically and mentally. Unfortunately I have arthritis and , as they say up here, can barely walk the length of myself! The local Maggie's do an easy yoga class so I might try that. You've all inspired me to attempt something physical and "outside my comfort zone" (most overused phrase EVER!) so thank you.

 

Have  a lovely Easter weekend and hope the sun shines on everyone....

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Cora

Just popped in from the Feb group and saw your question regarding PICC line covers. I've bought several on-line from Annabandana. They do them in 3 different sizes, sm, med and lge in a huge variety of colours and designs at £2.40 each. They also sell loads of headwear again all reasonably priced. For the warmer weather I'm thinking of buying matching covers and maybe set a new fashion trend☺. Good luck xx

PS Reading the posts in your group you seem to be giving and receiving the same support as in our Feb group. You can't beat it😊. If any of you want to ask any questions please pop in and ask. We're all happy to help. Enjoy the weekend. Happy Easter🐣🐀πŸ₯ 

 

 

 

 

  

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Hannah,

 

Thanks for messaging ! That is absolutely amazing - really does sound like a β€˜wonder drug’!

 

Best of luck and keep in touch!

 

Love,

Beth xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Beth!!

I am indeed on the same regime as you. It’s bloody good too! I’m just over 2 weeks having it, been to see my oncologist today, and she can already tell from my physical exam that my 5.5cm lump is smaller! 

P.s. nice to meet you too.

 

Hannah x

Member

Re: April 2019 Chemo Starters πŸ’–

Hello all,

 

Hoping I am posting in the correct place! I started chemo yesterday TCHP after HER positive diagnosis. bit woozy today after steroids but wondered if anyone else is on this regime? Sorry I haven’t had chance to scroll down everything!

 

Nice to β€˜meet’ you πŸ™‚

 

Many thanks and good luck!

 

Beth xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Oh good I’m pleased the nausea has passed and that you have meds for it. I seem to remember I had anti sickness from day one, it might be worth chatting through with your onc at your next pre chemo appt. Good for you doing the run or walk tomorrow, good luck and enjoy your chocolate treat! X 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi michelle

Yes i rang the unit yesterday they told me to start my anti sick tablets (i was about to as it was day 2) which i did and i havent been sick again but had nausea, im snacking on toast and ginger biscuits so it seems to be working so far.  Felt a bit better this morning until i took my steroid injection then i felt rough so i went back to bed.  Id already signed up to an easter bunny 5k tomoro which im still hoping to do even if i just walk it.  Anything for a chocolate easter bunny (and medal !!) Xx


@Michelle21 wrote:

Hi Running Sue, great name! I also ran before diagnosis, but had to have 10 months off. I had chemo-surgery-rads and started running about a month after rads. I’m pleased to say I’m back to 3 or 4 times a week, not quite the pace I was at before but getting there and I’m sure you will too.

Sorry to hear you have been suffering with sickness have you contacted your unit? They can change the meds so you aren’t sick next cycle. I think feeling sick is to be expected but they can do a lot to prevent you being sick as like you say it zaps your energy and has a knock on affect to everything else. X


 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Running Sue, great name! I also ran before diagnosis, but had to have 10 months off. I had chemo-surgery-rads and started running about a month after rads. I’m pleased to say I’m back to 3 or 4 times a week, not quite the pace I was at before but getting there and I’m sure you will too.

Sorry to hear you have been suffering with sickness have you contacted your unit? They can change the meds so you aren’t sick next cycle. I think feeling sick is to be expected but they can do a lot to prevent you being sick as like you say it zaps your energy and has a knock on affect to everything else. X

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Llangal   Consultant said salty water was the best mouthwash  forget fancy stuff stick to the basics.  Reading other posts i feel a complete wimp.  First cycle, Thurs 14th then wham, reacted to pertuzemab and docetaxol so my outpatient day turned into 2 night stay and no visits on here for reassurance.  Then Tues suffered central chest pain and ended up on A n E.  Husband being brilliant with care and doing the injections, just want cycle 2 to go better.    Feeling pretty wiped out but determined i can do this.     Happy Easter everyone.  

Member

Re: Morning all! I am starting chemo next Monday. My picc lin...

Hello

How is your chemo?

I am due to start next week so I wondered how you were getting on? 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Ladies,

 

Just to make you all aware that you can get a waterproof cover for your picc line through the GP on prescription. The brand is LimbO, and they come in different sizes, I checked the website and gave my surgery all the details. One nurse suggested cling film, but this isn't very practical!

 

I'm now two weeks after first FEC, little bit of heartburn from steroids one day, but I'm getting out every day, walking around 4 miles or cycling 8miles, feeling very well.

 

One of my friends made my PICC line covers for me, otherwise the only local option is a bit of scrappy bandage. I can coordinate with all my summer clothes now

 

Still got all my hair as well!

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Cora

 

i have a PIcc line & you will have to get your own covers. I’ve ordered mine from Etsy. PICC Line Design, Aberdeenshire. They are really nice, I am also having chemo weekly for 12 weeks then a 12 week cycle of FEC which I’ll gave every 3 weeks followed by surgery & then radiotherapy.  Summer will he strange this year, I’m also gutted that I cannot do the gardening but if the chemo etc saves my life then I’m prepared to sacrifice a few months of feeling weak/tired etc. we’ve got this. Thus forum is great for support. Hope you get your PICC line cover 😊

Member

Re: April 2019 Chemo Starters πŸ’–

Hi michelle

Good to hear u are walking every day.  I had my first chemo session yesterday and i had nausea all last night and was sick at 6am so not had the energy to get off the settee but my aim is to walk a little every day as i agree with you it will help me mentally and physically.  Prior to being diagnosed i ran 3 or 4 times a week and ive hardly run since my lumpectomy 6 weeks ago so trying to keep active once i get my strength back.  Well done!! Xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Christine

I’m from April 18 thread and i just wanted to let you know that I walked 3-4 miles everyday during chemo. It helped me mentally and also it seemed to keep the fatigue away and I didn’t get any chemo se’s (other than the obvious hair loss). There is evidence to suggest that keeping fit reduces the risk of post op infection too. I decided whilst having chemo that even if the walk was all I did on some days then I would make sure I did it and I have to say it worked for me. Like you say you have the added bonus of being young and healthy. I hope all of your treatment runs smoothly x

Member

Re: April 2019 Chemo Starters πŸ’–

Hello

Thank you so much for getting back to about the chemo.

It is really reassuring to hear from you and your experience of it so far.

I will be having FEC-T

I had the results from histology from my 3rd op and still not clear margins

but it is pre cancerous and low grade and 0.5 mm from the margin. I have a meeting booked to see my

surgeon but it seems it is up to me whether to monitor it or have further surgery or a mastectomy.

 

Smiley Happy

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Mominette and Susanmanchester,

 

Sorry about the third excision! I would agree with Susan - go for it. You have to throw everything at it to prevent a re-occurence. I was due for an oncotype test and then they lost my permission slip so it never went. My oncologist shared the grades (I had different types of cancer in each breast) and told me I had to be involved in the decision but he wouldn't want me to get 6 months down the line and wish I had had chemo. I am the sort of person who needs to know I have done everything I can to make sure I stay healthy. 

Be strong. We are here for you. It's not going to be the most fun time but it will be worth it.

Let us know what you decide.

Sharon

Member

Re: April 2019 Chemo Starters πŸ’–

Little weekends away that don’t require long drives, and ones that are close to hospitals if you need one πŸ˜‚

That seems to be what I look for nowadays!

I love caravan breaks, as they are just so relaxed and peaceful and everything can be done at own leisure. I’m going in a caravan this weekend in Wales for Easter to see my sister, and I can’t wait for a change in scenery.

As for cancelling Florida, that’s very upsetting. But you will have a great time on the cruise I’m sure!

Member

Re: April 2019 Chemo Starters πŸ’–

This was the same for me. Only 28 so I’m doing everything possible to get rid!! Chemo, then double mastectomy and then radiotherapy. They said I might need chemo after again too. I’m on weekly taxol with carboplatin added every third week. I had my second taxol yesterday and today I feel ok just tired, hoping the side effects for this one stops there as the carboplatin makes me feel like crap. But I have been lucky so far and still managed to get out for a 4mile walk everyday. I know this won’t continue as the chemo builds up in the body but trying my best now. 

I’m cold capping too. I actually quite like it, takes my mind off the chemo. If it works or not is a different matter but the wig is on standby. I’m not sure I could cope having handfuls come out in my hand so would go for the shave at that point. 

I know everyone is different and I think I’ve (unfortunately) got youth on my side but we will all get through this. I love that little quote from the consultant saying think of 2019 as the year to invest into your future (going to steal that one!) 

Keep strong girls. We’ve got this πŸ’ͺ🏼

X

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Shi,

I did ring and they advised to keep taking paracetamol. Which is what I have been doing. Still having headaches, no matter what I drink!

Haven't had time to read all the posts but am going to do so now. Thinking of you all. Thank you for the support - you rock!

sharon 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Cora

I was missing my summer holiday as well, was due to go to Florida in September. Had to cancel as thought to hot and would be to much (husband a Disney fan). Would have also booked a last minute break some time may/June. So instead I have booked a cruise for October so my husband can go off knowing I am fine and looked after if I don’t feel up to doing anything. Over the next few months I have booked shows to go and see and will look at other treats such as spa days and overnights at posh hotels with very nice restaurants so I have things to look forward to and can book last minute when I am feeling I could cope. 

 

Anyone else got any more ideas about what I could do to treat myself and also my husband over the next few months

 

thank you

Member

Re: April 2019 Chemo Starters πŸ’–

I’ve got to be honest, for me, chemo was never an option.

I think it’s amazing what they can do these days in order to stop a recurrence. I’m 25, and I’m having a double mastectomy after chemo, then followed by radio therapy. I will take everything I possibly can in order to stop this awful disease from coming back.

For us HER2+ cases, we also have the beauty of herceptin and perjeta, which kills the disease even further.

As for hair loss, I’m on day 16/17 now post chemo, and I’ve lost a few strands so far. I wash it around twice a week and leave it to air dry- I also used the cold cap.

The side effects of chemo for me were bad the first week, and then they subsided for these last 2 weeks.

I would definitely consider chemo. It targets the whole body rather than just that specific area, and any little stray cancer cells will be zapped in doing so!

Member

Re: April 2019 Chemo Starters πŸ’–

Hiya so sorry to hear about third excision... Have had two and waiting result of second. In terms of deciding about chemo I agree it's impossible. I have been on the Predict site breastpredict.nhs.uk which goes some way to helping but as the oncologist pointed out that has to be balanced against toxicity of drugs! 

I'm due to have Taxol and Herceptin 

I've decided I will have chemo as feel I should take any chance I can to stop it recurring

Wishing you much support in whatever choice you make. 

I too have great fears about chemo but have read so many positive stories of people coping on this website.

One of the consultants I saw said to me to view 2019 as the year I invest in my future and I think that's a really positive way to look at things for me.

Member

Re: April 2019 Chemo Starters πŸ’–


@Mominette wrote:

Hello

I am due to start chemo on 25th April although I have swollen glands/cough at the moment. I have grade II invasive DC. I had surgery on 1st March but didn't get clear margins so had re-excision on 19th March. No clear margin again so a 3rd surgery on 8th April. I am getting the results of the 3rd surgery this morning. I am nervous. I had the oncotype test which came back with a recurrence score of 29, hence recommendation for chemo. I am dreading chemo and asking myself should I have it?? I would appreciate any feedback about this, people in a similar situation  or who have had chemo. I am due to have FEC

 


Hi I was in a similar quandary as chemo only alters my odds by 6 per cent however my biggest fear is recurrences and chemo is belt and braces . I was also stage 2 . Nearly had last FEC then Taxol am cold capping still have most of my hair it is nowhere as bad as I thought and could save your life . My advice would be. Grit your teeth and go for it

Member

Re: April 2019 Chemo Starters πŸ’–

Hello

I am due to start chemo on 25th April although I have swollen glands/cough at the moment. I have grade II invasive DC. I had surgery on 1st March but didn't get clear margins so had re-excision on 19th March. No clear margin again so a 3rd surgery on 8th April. I am getting the results of the 3rd surgery this morning. I am nervous. I had the oncotype test which came back with a recurrence score of 29, hence recommendation for chemo. I am dreading chemo and asking myself should I have it?? I would appreciate any feedback about this, people in a similar situation  or who have had chemo. I am due to have FEC

 

Member

Re: April 2019 Chemo Starters πŸ’–

I'm at the same stage as you and I'm going to shave mine as struggle with going for a shower and it coming out in my hands. I believe it would all be out roughly week 2of cycle 2 but depends on individuals hair xx