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April 2019 Chemo Starters πŸ’–

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

Member

Re: April 2019 Chemo Starters πŸ’–

Hiya Runningsue42

 

I also had EC and was sick the same day....not much though. I did however feel nauseas and rough for a few days, even though I was taking my antisickness tablets religiously...plus the top up ones. I do suffer with menieres though, so the treatment may have just made my dizzy/nauseas symptoms worse. Once that passed, I have waves of weakness/tiredness/dizziness for a few days, but have also felt really good for about a week.

Im on day 15 and my hair loss has started today πŸ˜”. Thought I’d prepared myself for it, but have to admit, it has upset me.

Hopefully I’ll feel good for the rest of the week, before my next treatment on Tuesday

x

Member

Re: April 2019 Chemo Starters πŸ’–

Hiya All

Im after some advice please.

Im on day 15 after EC and my hair has started falling out. Does anyone know how long it takes for it all to go?

I already have fine hair and wondering whether it is worth going to get it cut short, so the loss is less noticeable, or will it all be gone in a few days?

thank you x

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 3rd 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’–

Hello

I am due to start chemo on 25th April although I have swollen gkan2ds/cough at the moment. I have grade II invasive DC. I had surgery on 1st March but didn't get clear margins so had 3rd 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 ha e DEC

 

Member

Re: April 2019 Chemo Starters πŸ’–

Morning,

 

sorry to hear you're not not feeling great. I had my first EC a week ago today. Although it wasn’t as bad as I was expecting I also felt very nauseous all night, I didn’t sleep at all that first night although I wasn’t actually sick. I found that ginger tea helped, I can’t say I liked it (although I have got used to it now) I just sipped that and took the anti-sickness pills.

Hopefully it will get better for you in the next few days,

Take care,

Mandy xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi ladies

I had my first chemo session yesterday of EC and i feel rotten 😒😒 i had nausea all night and i was sick this morning.  I thought it would be a few days before the side effects started.  My temperature was normal.  I rang the centre and they told me to take the anti sickness tablets for the nausea but can anyone recommend anything for the nausea?? Xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Cora, 

i had an introductory visit, a nurse talked me through each of the drugs I was having and what the side effects of each were and what I should do if I experienced any. She also went through diet with me, telling me which foods to avoid. Finally she told me about the different support groups in the area. I haven’t got a pic line so can’t advise on that. I know what you mean about holidays, I had two booked for this year and have had to cancel both of them cos of treatment. I’m gutted but trying to look at it as a temporary blip. 

Good luck with your treatment. 

 

Mandy xx

Member

Re: April 2019 Chemo Starters πŸ’–


@Cora wrote:

Hiya I have HER-2 positive ductal grade 2 ... only just getting up to speed with all the jargon so not sure that answers your question. Oncologist says the weekly dose means they can give less strong content so you don’t have the highs and lows of more spread out treatment... will see on that... Berlin is a wonderful city... 


I have one more FEC then nine weekly Paclitaxel not looking forward to that but at least no injections after . July 5 last chemo currently living off digestives tinned soup and yogurt after steroid crash 

Member

Re: April 2019 Chemo Starters πŸ’–

Hiya I have HER-2 positive ductal grade 2 ... only just getting up to speed with all the jargon so not sure that answers your question. Oncologist says the weekly dose means they can give less strong content so you don’t have the highs and lows of more spread out treatment... will see on that... Berlin is a wonderful city... 

Shi Community Champion
Community Champion

Re: April 2019 Chemo Starters πŸ’–

Interesting times 😘😘how are you? Hope you rang your unit to check with them ❀️❀️ You units would always rather you ring about anything, they will be pleased you are keeping close eye on yourself, it helps them help you on the chemo journey πŸ’•πŸ’•βœ¨βœ¨Shi xx

Member

Re: April 2019 Chemo Starters πŸ’–

12 weekly doses wow?! 

I didn’t have an introductory visit to my unit, just thrown straight in πŸ˜‚ but then again, I also didn’t have a PICC line.

Can I ask what type of breast cancer you have?

And I also feel the same about the summer holiday thing! I’m going to still try and go on my mini break in May to Berlin, but I’m coming prepared with my surgical masks for the flights!

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hello all

i have a introductory visit to chemo unit on Monday - Happy Easter! - wondering what to expect at this session? Will they fit the picc line then? And does anyone know if I’ll have to buy a cover for the picc line - if so any suggestions on where to find one? I have to have 12 weekly doses of taxol alongside Herceptin so it’s going to be a strange summer...don’t know how others feel but I’ve been pretty positive all the way so far but was floored when I went into a store this week and saw all the holiday stuff and it hit me that we won’t be going anywhere this year... self pitying I know and I’m ok now ... back to being positive πŸ˜€ x

Community Champion

Re: April 2019 Chemo Starters πŸ’–

Hi Debi2

 

You're definitely not a wuss! Its horrid! πŸŽ€πŸ’– Your body is being battered! (I was in hospital 5 times and the HOT clinic at least 3, maybe 4 times...😫)

There's so much info to take in...I actually said to my hubby that it was a couple of months before it started dawning on me exactly what the oncologist/doctors meant...I got to the point where I would ask them to repeat the info or you would spend days wondering what the heck they meant!

 

My first 6 Herceptins were done as infusions with chemo... the 3 injections I've had so far have been fine! No side effects! The chemo nurse comes to my house to do them...the drug is delivered to my house too! πŸ’–πŸ’ͺ🏼

 

Keep your chin up... πŸŽ€ x

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Aneeebel

 

Thanks for the info.  I am going to check what they said when i go for my marker fitted on Wed.  There is so much to take in all at once i have probably got mixed up.  How are the Herceptin injections? are there any sickness or side effects? i think i will be starting the herceptin with my 4th cycle which is when i start Doxetal (not sure spelling right).  Everyone on the forums are strong ladies, sometimes i feel i am being a bit of a wuss when i am tired all the time.πŸ’–

Member

Re: April 2019 Chemo Starters πŸ’–

Hi llangal 

Thank you for your lovely post 

It really made me laugh. (too much too soon bit) 

And a laugh is a great to have

Scatch on

 

Community Champion

Re: April 2019 Chemo Starters πŸ’–

I’m from the May 2017 starters and for anyone still looking for coping tips of any sort here’s my blog: http://lifeafterlola.com/

the Chemo thread on it has lots of suggestions which we all shared and we all got through it and have an annual meet-up now.  I hope you’ll do the same. Best wishes. 

Nikki. X

Member

Re: April 2019 Chemo Starters πŸ’–


@Kelly73 wrote:
Re: April 2019 Chemo Starters πŸ’–

Why no district nurse service ? I live on my own and no way could I have injected myself ... well done though ! 

 

Hiya

I was told a district nurse could come out, if I was unable to do it, but opted to give it a go myself. The thought of it was much worse than actually doing it x


You are braver than me then ! X 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi interesting times

Just popped in from the Feb group. Have you taken any paracetamol for your headache. So long as you take your temp, and it's normal 1st, then you're ok to take some. You just need to take your temp as paracetamol can reduce it. Hope this helps. Good luck xx  

Member

Re: April 2019 Chemo Starters πŸ’–

Re: April 2019 Chemo Starters πŸ’–

Why no district nurse service ? I live on my own and no way could I have injected myself ... well done though ! 

 

Hiya

I was told a district nurse could come out, if I was unable to do it, but opted to give it a go myself. The thought of it was much worse than actually doing it x

Community Champion

Re: April 2019 Chemo Starters πŸ’–

Hi Debi2

 

I'm from the October 18 thread... hope you don't mind me commenting πŸŽ€

I'm on Herceptin injections - you have 18 in total on a 3 weekly cycle...if you had Herceptin included in your chemo regime then these are counted towards the 18! 

I had Herceptin with 6 cycles of chemo so only need 12 injections

I will be taking Letrozole tablets for 10 years as I'm post menopausal 

 

Hope your treatment is going well...

Good luck to all you Ladies x πŸ’•πŸŽ€πŸŒΈ

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Sharon , ring them. They are there to advise and reassure.  You won't sound like a pathetic wimp so don't ever think that!  If you are unsure about anything be it treatment or side effects its always best to phone in.  Don't sit at home and worry as that won't do you any good either. 

 

Member

Re: April 2019 Chemo Starters πŸ’–

hi Ladies,

 

I need some input. I have had a headache for two days now. Yesterday was quite strong. This morning it was mild but it's building again. I don't have a temp but don't feel great (day 7 of cycle1). Do I need to call the hotline?... Am kinda freaked out by the possibility of neutropenia but also don't want to sound like a pathetic wimp! 
Thanks for the input in advance!

Sharon

Member

Re: April 2019 Chemo Starters πŸ’–

I’ve had a sore throat since chemo/ herceptin and perjeta.

Has anyone else had this? It’s annoying and painful!!

Member

Re: April 2019 Chemo Starters πŸ’–


@Hannahlizzy21 wrote:

ALSO! Cold capping ladies- I also thought I would mention that I am 10 days post chemo, and I have had minimal hair loss after cold capping. I have washed my hair maybe 3 times since chemo day, with baby shampoo, Luke warm water and Aussie Stop The Break leave in conditioner, and as I say... minimal hair loss. I hope this continues! X


Day 23 and still hardly any hair loss switching from FEC to Paclitaxel soon so hopeful ... only washing hair once a week and water spraying cold in between using cold option on dryer .. 

Member

Re: April 2019 Chemo Starters πŸ’–

Why no district nurse service ? I live on my own and no way could I have injected myself ... well done though ! 

Member

Re: April 2019 Chemo Starters πŸ’–

I just had my second FEC and not been physically sick just the odd queasy feeling just took a tablet and sorted it . One more then on to Paclitaxel which I believe less toxic ? 

Member

Swelling around shoulders

Morning everyone,

 

I am on day four of my first chemo treatment, although it hasn’t been as bad as I was expecting I have suffered with nausea, lack of energy and severe constipation. Today I have noticed a swelling between my neck and shoulder, I haven’t heard anything about this before, has anyone else experienced something similar? I am self injecting to increase my white blood cells and was told my bones would ache as the bone marrow would be more active so I don’t know if it is something to do with that.

 

any advice would be appreciated.

 

Mandy xx

Member

Re: April 2019 Chemo Starters πŸ’–

I’m having chemo before my surgery and im seeing my surgeon on Wednesday. I’ve had 2 rounds of EC so far and with so many to go before my mastectomy I too am worried that the cancer could just be growing if the chemo isn’t working. I’m hoping I’ll get a scan or something on Wednesday to check it is shrinking. I’m finding chemo quite rough. I feel awful for 2 of the 3 weeks and having the Easter hols this past 2 weeks has been tough. Hopefully the herceptin, pertuz and docetax won’t be too bad. But at least we can all get through this one day at a time and soon enough we’ll be out the other side.  I’m trying to think of this a bit like a pregnancy. I feel awful but every day I’m closer to the end. I don’t get the joy of a baby at the end but I’ll be well and stronger for the rest of my life. 😍

Member

Re: April 2019 Chemo Starters πŸ’–

Thank you all for your kind replies. I'm feeling well but then I suppose it might all change on Thursday. The closer it gets the more anxious I am.

 

I have a 8.15am appointment so they shouldn't be running too late.

 

Hugs to you all xx

Member

Re: April 2019 Chemo Starters πŸ’–

I felt rubbish the first week tbh. I feel good now though thank god. I hope that this is how my next 5 cycles will go. Rubbish one week and then fine for 2.

Yeah just double check, as it should only be for 1 year. X

Member

Re: April 2019 Chemo Starters πŸ’–

Hi 

I will check about the Herceptin next time i go. The Breastcare nurse told me on the phone so i could have heard her wrong - I thought it was a long time! I think the same as you about it shrinking but i am sure they have us on the breast treatmet plan for us, but it is a worry.  What day are you on now, did you feel not yourself the first few days?