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May 2019 Start

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Re: May 2019 Start

Hi Joemic,

 

The chemo staff have also had to use my other arm because the Epirubicin damaged the vein in my right arm. I had a mastectomy and sentinel lymph node test. My oncologist said that it was perfectly fine to use my BC arm.....but I worry about the 9 weekly doses of Paclitaxol. That’s a lot of cannulas! If my veins don’t cope, I will have a port....feels like one problem after another!!! 

 

As far as I am aware, when I eventually get to the hormone inhibitor stage (Letrozole) I will be having biphosphonate by infusion....not tablets.  

 

Hope this helps?

 

SP

x

 

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Re: May 2019 Start

5th and penultimate chemo went ahead today. They had to use the arm I didn't want them to🙁 but my left is still fairly red and swollen, they didn't want to risk the epirubicin tracking to that vein again.

I find it a bit confusing when they were adamant at my first session that it shouldn't be used but today they say up to 6 nodes removed is ok, a bit of a jump from the 2, I was initially told.

Maybe some of you ladies can shine a light on it for me.

I've felt tireder today but that could be because I had the zometa as well, it does seem as though that wipes me out. Pleased my last one will not include that😊.

Apart from that I feel fine and will hopefully continue to be but heyho I'll deal with whatever is thrown at me - the finish line is in sight👏🏻

 

I hope you ladies who are having your weekly chemo are managing well with minimum side effects, you're a step nearer the finishing post as each week passes🤗.

I hope everyone else is managing well and chemo is being kind to you, have a good weekend everyone.

 

Joemic x

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Re: May 2019 Start

Good morning Mangomum

I feel for you, its always a bit of a worry when the children get coughs, colds and splutters, whenever mine get them they invariably like to share them with me but luckily they have remained germ free, I really hope you don't catch the cold, I'll keep my fingers firmly crossed for you.

 

The bisphosphonates, in my case, are because I am post menopausal and studies have shown that for us oldies (joking, I don't think 53 is old - well not when I don't feel chemo fatigueSmiley LOL), it reduces the risk of recurrence of the BC in the bones. I will be having them for 3 years, well that's if I can tolerate the tablet form which I switch to after chemo has finished (I think the side effects can be very rough), if not then it will be back to the infusion which I have tolerated very well. I think you're probably right regarding the extended use of Tamoxifen and the use of bisphosponates but your Onc will tell you his reasoning in your case, there seems to be so many variations in treatments it makes it a bit confusing to make sense of why we seem to take different paths when some of us seemingly have the same type of BCSmiley Frustrated.

 

I hope you manage to get some sleep, not long for the school holidays, must admit I'm looking forward to not having to get up at 6 amSmiley Happy

 

Joemic x 

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Re: May 2019 Start

Hi Joemic, 

Brilliant news regarding your youngest and for getting the go ahead for your penultimate chemo - now that really feels like a milestone! 

I worry about lymphodema too so fingers crossed for Friday. 

You mentioned bisphosphonates as part of your ongoing treatment and my oncologist mentioned this too duringv my initial consultation - but I can't remember why he suggested it and I didn't really questioned it as it was all a bit of a blur. Reading your post has just reminded me. Did your oncologist say what the benefits were? I vaguely remember him saying they were bone strengthening drugs? I wonder if its because they now have extended the Tamoxifen to 10 years etc. Anyway it just made me think to mention it at next appointment. 

 

I was woken up by my youngest who has a nasty cold ( all I need to catch right now) and can't get back to sleep hence the middle of the night post. Be glad when schools over tbh so we can just hanker down and try and remain germ free. No really don't want another delay in chemo or time on hospital 🙄

Good luck to us all and for the weeks to pass swiftly and without too many hiccups whichever regime we on. 

Mangomum xx

 

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Re: May 2019 Start

Hi May ladies

 

I've been busy catching up with your posts and there seems to have been a hive of activity; It's heartening to read that you are all marching on with your treatments and on the whole it has been positive for you all so far. It must be quite time consuming having to have chemo every week now but at least you can see the finishing post, it might be in a few weeks but nevertheless it's coming which is great.

I think you're right Rose, the anticipation of the side effects gives us more grief than the actual reality of them, although I realise some ladies have a harder time than others. I have no doubt everyone will get through their treatments, each and everyone of you has so much inner strength and determination it is an inspiration to others - me includedSmiley Happy.

 

I've had a good week going out and about, it's been a breath of fresh air after avoiding crowds during my low week. I've also been to parents evenings a few times this week and a sports day today. I was so glad I made it, my Oncology appointment was running 1.5 hrs lateSmiley Sad but literally got to the sports field as my youngest was walking to the track for his 1200m race, the little smile he gave as he clocked me made the rush worth it. He went on to win his race by quite a margin, boy can he run, I needed a lie down after with all the jumping up and down and cheering I didSmiley LOL. So proud of him, don't know where he gets his running speed from but it certainly isn't me or his DadSmiley Surprised.

 

Anyway, despite the phlebitis, which has been quite bad the last few days, my Oncologist has given me the go ahead for my 5th and penultimate chemo this Friday, so relieved. She has given the go ahead for them to use my BC side where I had my sentinel node biopsy if the phlebitis hasn't reduced by then, I'm not keen as I don't want to risk lymphodema. Must admit the track marks and vein collapse on my left arm makes me look a bit like a drug addict but I'm hoping we manage to sneak the next 2 in there somehow. I should be getting an appointment to meet the radiologist shortly and it should go ahead end Aug beginning Sept as long as I get through the next 2 chemo's. By end Sept I should be doneSmiley Very Happy, apart from the bisphosphonates and hormone tablets which the Onc says I will get on my last chemo, hopefully I will tolerate them.

 

Good luck to all who are having treatment this week, I hope it goes well and for those recovering I wish you speedy recoveries as side effect free as possible - Keep positive ladies we have the finishing post in our sights nowHeart

 

Joemic x 

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Re: May 2019 Start

Morning all

 

thank you Mangomum - for the ‘home straight coming into view’ was starting to feel ‘oh no 11 more weeks of this, minimum’ but you’re right remembering how far we have already come is important and we are getting though it.

 

Joemic, I hope you have a positive consultation today xxx

 

Happy Wednesday to all, 

 

xxxxx

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Re: May 2019 Start

Hi Banabrain, 

 

I dont want to get my hopes up that I will be the same but fingers crossed its not as bad as I'm fearing. Due to have my first round of docetaxel after fec next Wednesday and feel a little bit more confident about it now having read a few posts.

 

Good luck with the rest. The home straight is starting to come into sight 😊

Mangomum x


@Bananabrain wrote:

Hi guys 

I had my first Docetaxol on Wednesday and so far so good 😊  Tbh the nurse who administered it was pretty negative about the side effects and it really scared me but it's not been too bad at all.  From what I've read, the effects take longer to kick in than for FEC but nothing much has happened and it's been nearly a week now.  I have a pretty horrid taste in my mouth and have had some indigestion and mild headaches.  Joint pain has been pretty minimal and I've not felt the need to take any painkillers.  So far I'm finding it easier than FEC (and I didn't find FEC too bad) so I hope that's reassuring for anyone moving on to this new drug 😊

 

My sleep patterns are a mess though - I keep waking up at 4am and then can't get back to sleep - ugh!

 

Hope all are doing ok xx


 

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Re: May 2019 Start

Hi Louise page, 

Yes, I have  had the injections with fec but was also admitted with for a week due to infection /high temp with my first round. Sounds like the side effects won't be much different to what I'm having now and i could do with loosing my taste buds too as the steroids have definitely increased my appetite lol.

 

Hope all goes well for you and brilliant you have stayed so active. I'm walking when I'm on my good week but thats it.

 

Mangomum x

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Re: May 2019 Start

Hi MangoMum

 

No I didnt have Fec.  Straight onto Docetaxel and Carboplatin.

 

The side effects are nausea (they give you tablets to take home, but mine wasnt too bad so have never used them;  diarear (cant spell) again you get given tabs to take home, but again I've never used them as not had it - I get constipated instead (which is not supposed to happen);   tiredness I have a couple of "old lady"  naps during the day - but at the same time manage to get out running quite a bit with my club;  mouth ulcers (they give you mouthwash to take home) never used it as never had any - although after the 2nd cycle I had mouth sores each corner of the outside of my lips   they lasted a week, I used Sudocream it worked well;  loss of appetite the first week after chemo - was a good thing for me!

My hair fell out between day 12 and 19.

 

After my first cycle they were due to give me the injections to take home - you inject yourself daily - into a flabby part of your tummy.  Did you have these onFEC?  They are to boost your immune system and keep your white blood cells healthy.   They forgot to give them to me, I forgot to ask.  Next day I rang up and they said see how you go without them.  A week later I had a high temp and had to go to A&E.  I had a blood infection and was admitted for a week.  This would not have happened if I had been taking those injections, so now I insist on them.  Make sure you get them.

 

Hope it all goes well for you.  Best wishes

Louise

 

 

 

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Re: May 2019 Start

Hi guys 

I had my first Docetaxol on Wednesday and so far so good 😊  Tbh the nurse who administered it was pretty negative about the side effects and it really scared me but it's not been too bad at all.  From what I've read, the effects take longer to kick in than for FEC but nothing much has happened and it's been nearly a week now.  I have a pretty horrid taste in my mouth and have had some indigestion and mild headaches.  Joint pain has been pretty minimal and I've not felt the need to take any painkillers.  So far I'm finding it easier than FEC (and I didn't find FEC too bad) so I hope that's reassuring for anyone moving on to this new drug 😊

 

My sleep patterns are a mess though - I keep waking up at 4am and then can't get back to sleep - ugh!

 

Hope all are doing ok xx

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Re: May 2019 Start

Hi, 

 

Did you have Fec first? It could be that I'm reacting to with palpitations I'm guessing (hoping). How are the side effects with Docetaxel?

Hope it all continues to go well. 

 

Mangomum x

 

 

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Re: May 2019 Start

Hi MangoMum

 

I am on Docetaxol.  I have 2 lots of 4 steroid tablets - 4 at brekki and 4 at lunch - the day before chemo, the actual day and the day after.  They make my face go red first thing in the morning, but then it fads away.  I dont get any palpultaions.  Hope it is just as good for you.

Louise

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Re: May 2019 Start

Dear Mangomum

 

Good luck with your wig, and enjoy your good week (chores and all!!).

 

I say try not to think about the next stage until it’s here, but I’ve never managed that!

 

love to all

xxxx

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Re: May 2019 Start

Morning all, 

 

Just catching up with your threads and wanted to wish you good luck with your treatment Ruth and hope you continue to feel ok for the rest of the week. 

I'm not familiar with the different chemo combinations, but it's good to hear they are not causing too many side effects so far and they have adjusted your chemo SP. Sounds like you have a good team who are proactive in your treatment. 

 

I am quite nervous about my next part of treatment (docetaxel) as I will need to double the dose of steroids I'm taking for fec and I already get a bright red face and pulpitations - which I have mentioned but been told its a common reaction??

Hope they are right.

 

I'm on my good week now so looking foward to catching up with chores ( never thought I would enjoy cleaning) and seeing some friends etc. I have a new wig, which is really comfy, so I'm going to be brave and wear it this week.

 

Mangomum xx

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Re: May 2019 Start

Hi

Yes Ruth last EC on Tuesday. Glad I'll be half way through the chemo then!

Good Luck with your new treatment SP. It's awful you are having to go through all of this a 2nd time but you've done it once and will do it again with your positive attitude. It sounds like the new treatment was taylor made for you. I really do hope you tolerate it well with no problems.

Take care everyone. Here's to a good week for all

Love Rose 

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Re: May 2019 Start

Hello

 

thank you Rose, I am not good with cold either, but hoped if I managed a few it might minimise the neuro impact. Are you coming up for your last EC soon?

 

SP, given how anxious it is going in to the unknown I can’t imagine how you feel about the 26th, but I am really pleased you have the go ahead for the additional element to hopefully prevent the same reaction. 

 

Wishing all a positive week,

xxxx

 

 

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Re: May 2019 Start

Hi Ruth, 

 

I’m really glad that your first Paclitaxol went ok. I hope you continue to cope well with it. 

I thought you’d be interested to know that I’m having a special version of the same drug....NAB Paclitaxol.

My oncologist applied to NICE as I meet the criteria to have it because in 2012,  when I was also on chemo for ovarian cancer, I had an adverse reaction to the steroids prior to Taxol...so bad that they stopped the Taxol,  as I couldn’t have one without the other. As you can imagine I have been very anxious about my possible reactions to Taxol because of this. The NAB version is apparently a lot more expensive, hence the need to apply to NICE for approval....

The molecules in the NAB version are albumen coated so I don’t need the steroids. I’m not actually sure if I need antihistamines either....I’ll soon find out though, as my first treatment is July 26th.

It will be interesting to see what side effects I have compared to last time. I’m hoping it will be a gentler experience!! 

 

SP

x

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Re: May 2019 Start

Hi Ruth

Glad your first o e went went well and hoping the next 11go just as well. Sometimes I think the anticipation of the treatment and side effects is worse than when you actually have it. Hope the cold slippers and gloves continue to be bearable for you I hate being cold so don't think I would be very brave if I had to use any of the cold devices.

Take care and keep going 

Love Rose xx

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Re: May 2019 Start

Good morning all

 

I had my first treatment of Paclitaxol on Friday (weekly dose) and side effect wise so far so good.

 

the premeds were given to me intravenously (anti sickness/steroid/antihistamine) waited 30 mins, during which time I had the cold gloves and slippers fitted 🥶. Then the treatment which took about an hour.

 

I reacted to the antihistamine and was asleep through most of it! 😀 I found the slippers really easy (I have feet like hooves so couldn’t really feel the cold that much😆). nearly took one of the gloves off, but gave is 10 mins and it passed, I have no idea if it will make any difference but will persevere for now.

 

no medication to bring home!!! I slept in the afternoon too but compared to previous treatments this was much more bearable, although I know it will build up.....11 to go!

 

I hope everyone is enjoying the weekend and having minimal issues,

sending lots of love

Ruth 

xxxx

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Re: May 2019 Start

Hello Joemic

 

 I hope your arm settles down soon, and as you say it’s superficial. 

 

Only 2 left, you have been so amazing throughout this, this stage will be over soon! From what we hear the radiotherapy is nothing compared to this and you will be able to give us all the tips for this too 😉.

 

enjoyed your trip I hope you get good weather 😎

 

I hope everyone has a good Friday and weekend

xxxxx

 

 

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Re: May 2019 Start

Good morning Ruth

I've only got 2 more to go, my arm swelled to nearly double it's size and rather red and hot so it got rather painful. I have been put on antibiotics again to see if they are successful at sorting it out again. No picc line was mentioned, they are aware I really don't want to go down this route if at all possible. At the moment all my vital signs are good so it is indicating that it is only superficial however, I have been told to expect being admitted at the first sign of any deterioration, whether my vitals are good or notSmiley Indifferent.

My next Onc appointment is Weds so she will be reviewing my responses to treatment then, we were supposed to be discussing my radio then but I expect it will be more about getting the last 2 cycles done. I think that's why the chemo nurses didn't mention the picc line, leaving it to the Onc instead Smiley Very Happy.

 

Any way I'm not going to let it bother me, it's the last of my low days today so am planning to go to a dragon boat race tomorrow, 2 days out with my work colleagues next week and anything else I can fit inSmiley Happy.

 

I hope your treatment goes well for you today, phew weekly chemo, that's going to take up your time but it'll be worth it in the end.

 

Good luck to all having treatments today - I really hope it is kind to you and for those recovering, I hope you have minimal side effects and can do all the things you want to do.

 

Joemic x 

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Re: May 2019 Start

Dear Joemic

 

I hope you manage to keep going without the line if that’s your preference .... how many have you got left?

 

xxxx

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Re: May 2019 Start

Ruth -  So pleased to hear your lump was a reaction and not anything more sinister - not that the reaction you got was good but it must've been a relief to know that's what it was. I think this will be our 'new normal' from now on, worrying about all sorts of things - I do hope it settles down the longer we eventually stay BC free but somehow I doubt itMan Sad.

I'm with you on the high maintenance theme - never spent so much on myself since having the kids, it feels a bit strange but I'm sure I'll get used to itSmiley Happy, that's if I can keep my daughters mitts of my newly acquired stash, she's already taken a liking to some of my scarves, I suppose I should be flattered as she's way younger than meSmiley LOL Smiley LOL. I don't think I can quite stretch to eye lashes, they make me feel queezySmiley Sad but wish you luck with yours.

 

Mangomum -  I'm not sure what they'll do about the phlebitis, it's doing strange things at the minute, the original site is now back to its normal size but this morning I've developed another lump about 2 inches further up the vein towards my elbow which is starting to go red, same symptoms as last time. I phoned the emergency line for advice, the nurse thought it was a bit strange that the swellings are happening so long after the vein was used for chemo - they used it for the first 2 cycles and used a different vein for the following 2. As we are not sure whether the swelling is going to develop further I had to draw around it and then draw around it tomorrow to compare whether it has worsened, she is contacting me tomorrow and I will have to go and have it checked by them - I can tell you I'll have to have it checked because its nearly double the size now, unless it decides to sort itself out overnight.

I suppose they will decide whether I will need a picc line or not when they evaluate it tomorrow - I'm not keen to be honest, I'd rather carry on as I am if at all possible but I'll have to wait and see. Luckily my temp and BP have remained within normal range so far throughout my treatment. I might be a little round in the middle but at least I'm a healthy round in the middle personSmiley LOLSmiley LOL.

 

Hugs and best wishes to all May ladies - we WILL get there in the endSmiley Happy

 

Joemic x 

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Re: May 2019 Start

Good morning everyone 

 

Thank you so much for all the amazing and really interesting updates, I always learn so much. I will have a look at the smoothie it sounds packed with goodies.

 

Joemic- I also have really dark nail varnish, but I accidentally bought a slightly shimmery top coat (I thought it was plain) and it makes them a little less harsh. I am becoming more high maintenance than I have ever been, creams for nails, skin, varnish, scarf tying and eyebrow pencils!!! I have bought some lashes but I am a little scared of them 😧!! Enjoy you good week. 

 

SP-I was surprised about not getting the advice re the polybalm after reading the study....for a while I wondered if it was fake, but it’s referenced on several sites (I think Macmillan and CRUK). I think the singing sound wonderful.

 

Mominette-I hope you are recovering well and Mangomum yours goes well.

 

Rose-My skin has improved a lot too...I wondered if it’s all the water I’m drinking now???

 

im sorry I have missed people, just taking boys to school, but sending lots of love and hugs to all 🤗 

 

Again, sorry if everyone already knows this, but apparently it’s a common reaction to the dye they use in MRI....In the afternoon I developed a lump in my armpit, I was concerned, but it was very tender so tried to stay calm that it wasn’t ‘another one!’ And they confirmed this yesterday (phew). 

 

Lots of love 

Ruth xxxx

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Re: May 2019 Start

Hi Joemic, 

 

Good to hear you are still doing amazingly well despite the phlelbitis and still have your amazing sense of humour!

My eyebrows are thining now too and my eyes feel more sensitive so I'm guessing my eyelashes maybe next 🙄

Are you able to have a picc line put in or a portocath? I'm not sure if it is the answer as I'm not up on how EC works etc.

Fingers crossed you get through the rest of the treatment. If anyone can, you can. 

Mangomum xx

 

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Re: May 2019 Start

Good evening lovely May ladies - well nearly midnight but evening will do, I don't think good midnight has the same ring to itSmiley Happy

 

Well there has been lots of chats  and posts to read and I'm pleased to see that on the whole people seem to be having more positives than negatives at the minute which is great to hear.

 

I've been fine the phlebitis has gone down a lot - I can touch my middle finger and thumb when I wrap it around my wrist now, whereas there was a 3/4 inch gap when it was swollen, it's still sore but is getting better everyday. The vein they used last time is getting a little sore so I'm busy massaging it like crazy in the hope it doesn't develop phlebitis, the chemo nurse thinks it will. I just hope my veins last the final 2 EC cycles. I still can't complain though as apart from some fatigue, the down mood for 3 or 4 days following my chemo and the veins I have had nothing else - I have so much admiration for you ladies who are battling much worse than I am and keep battling on.

 

I'm not a make up person but have been totally absorbed this past week on painting my nails, it's much harder than I thought, I think I'm getting the hang of it now. I noticed that my nails were getting a little discoloured, strangely only my thumb nails but I had read that painting them black protects them a bit - well I looked like Morticia from the Adams family - not a good look at all; so have been experimenting with stickers and different types of nail art to break the black up.

My eyebrows seem to have done a runner - well nearly, so I have been trying to learn how to use micro pens to draw them on much to my teenage daughters amusementSmiley LOLSmiley LOL - such a lot to learn with this chemo businessSmiley Happy.. Waiting for an appointment for the look good feel good course, which could take a couple of months which I don't mind as I will be preparing myself to be going back to work just after that so will find it more helpful as I'll know what I'm dealing with by then.

 

Oh my nearly lost my post thenSmiley Sad.

 

SP - Glad you get so much enjoyment out of singing, I unfortunately sound worse than the neighbourhood catsSmiley Very Happy. It's good that you found the nutritionists session of benefit, all credit to you for paying so much attention to your diet, I'm not sure I could stomach the smoothie though but I think I'll give the sprouting seeds a go, I like all types of seeds, nuts and the like and I'm sure they'd help set me up for the rest of my chemo and radio too. Good luck with the Taxol and I really hope it's kind to you.

 

Sewbuddy - So pleased you have battled through the side effects and that you've had the last of the dreaded Epirubicin, it's horrible stuff. I hope you enjoyed your day pottering around, it'll have done you good and your right chores can wait, they will always be there waiting that's for sure. Good luck with the rest of your treatment plan.

 

Ilovehunny - I hope you had a good time with your friends, it can be quite scary venturing out during your low week - I seem to be acutely aware if  people start coughing and sneezing near me, funny I never noticed before going through this. I'm sure you would have had a good time. It's great to hear the cold cap is working for you. I'm sure you will make it to Chelsea next year - I want to go to the Great Yorkshire Show, I can't do it this year as I'm in my low week - everything good seems to happen in my low weekSmiley Sad but I will be making up for it once this is over. I hope the rest of your treatment goes well and you don't get any nasty side effects.

 

Mangomum - I hope your Doxetaxol goes well and you don't suffer too badly from any side effects.

 

Mominette - I hope you come through it well too. I'm sorry the cold cap didn't work for you, it's so hard to know if things will work or not.

 

RuthG - Hope all went well with your MRI. I hope all goes well with your Paclitaxol this Friday - the cream sounds like good stuff, I might just have a look at that study, you never know I might find it will be better than the black nail varnish.

 

Rose2020 - Your eyelash story made me laugh, it's something which would happen to meSmiley LOL, I find all this make up business difficult as it's not something I've bothered about before, so am learning much to my daughters amusement. 

 

Good luck to all who are starting new treatments this week, scary but I'm sure you will all manage to get through it, you have so much strength. Good luck to all who are continuing treatments, I hope things go well for you all and side effects stay away. At least I've got a week on Friday to go until my next lot and I'm feeling pretty good so will hopefully enjoy the next week or so.

 

Take care all

 

Joemic x 

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Re: May 2019 Start

Hi ladies,

 

Rose, you are so good to make such individual comments to everyone. I don’t think your brain is muddled at all!!! Be proud of yourself for your attention to detail!! 

 

I am now in week 3 of my 5 week rest before Taxol starts. I am well. I can eat normally and I continue to walk 3/4 miles every day. It definitely helps me physically and mentally...so win, win! 

 

I have taken Ruth’s advice and ordered some Polybalm. The research results with Chemo patients is impressive. I’m surprised that we haven’t been told about it by our oncology teams? I am very anxious about the possible side effects of the Taxol and want to do all I can to avoid hand and feet problems. I use cuticle balm every night on my hands and feet...and then wear silk moisturizing gloves to try to keep my nails healthy....no idea if it is helping but my hands and feet are soft!! The Polybalm will be a step up from this. 

 

The singing is good thanks. I love the challenge and discipline of singing a cappella and the camaraderie from the ladies there is fantastic. They have been so supportive and their attitude is that they will “sing me better”. I wish it were this easy.... but I love the sentiment. 

 

The nutrition session was good. I knew quite a lot of it but the nutritionist gave us a useful list of different ways that you could make green smoothies. The list has columns and you just pick one ingredient from each column to a create a balanced smoothie.  Rose, If you are struggling to eat enough veg, smoothies are definitely the way to go! Here is the one that I’ve had the most successful with: 

1 handful of spinach, 2/3 tenderstem broccoli, 1 small chunk of cucumber, 3 pineapple rings with some of the juice, cashew milk to loosen the mix. The cashew milk makes it creamy but you can add whatever fluid you prefer, even water! If you want it extra creamy add some avocado!  For me, the pineapple is what makes it into a pleasant drink! Vegetable smoothies need some sweetness to make them palatable. One of these every day will boost your immune system and add antioxidants to help your body cope better with the chemo. 

 

The other thing the nutritionist highly recommended was sprouting seeds...and I do this too!! He says that they have 50 times more nutrients than normal veg!! Wow!! I have a sprouter so have sprouting broccoli seeds on the go all the time. They are dead easy to grow and they are ready in just over 48 hours! I try to eat some every day, as they are salad like so I add them to a sandwich etc at lunch time. 

 

Hope you all have a good week and cope with whatever challenges that are thrown at you. 

 

SP

xx

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Re: May 2019 Start

Evening  ladies

Hope you are all as well as you can be.

I hope your 1st Docetaxel went ok today Mominette and that you get fewer problems than with the FEC, sorry to hear the cold capping didnt work for you but pleased you've kept your eyelashes and brows I'm hanging onto a few of each but they are looking very sparse! I have tried false eyelashes once but ended up looking like daisy the cow even with the most natural ones I could find so I might have to rethink that one!

Mangomum I hope the side effects from your last FEC are as minimal as possible this time🤞and that the 1st Doxetaxel goes ok. I'll have my first of those early August if all keeps going to plan.

Ilovehunny I have noticed the soft skin too. They mentioned dry skin and rashes as side effects of EC but I have had no skin problems just hoping it continues when I change treatments. I hope you enjoyed your night out with your friends and are managing to get in your garden. My backyard has never looked as good with all the time I've been able to spend in it!

Bannanabrain hope you are well. Thank you for the reassurance about surgery I'm already starting to worry about it even though I'm not even half way through chemo yet!! I'm glad yours went ok I'm sure we'll all have lots of questions for you when it's our turn.

Ruth good luck for your MRI results and the new weekly injections 🤞

Sewbuddy sorry to hear your last chemo took longer to recover from but hoping whatever you are having next treats you a bit kinder and also that you find something to cover your uncle fester eyes!!! There are lots of good videos on you tube about make up for chemo but they seem to concentrate on eyes/eyebrows and can be a bit tricky if you're not a regular make up user I feel a bit overdone when I've tried some of them.

SP I hope you enjoyed your singing? Did you get any tips from your nutrition session. I started off really well with eating but now find I hardly eat anything the first week after chemo then just want to eat rubbish! I'm trying to force the fruit and veg down I might start giving smoothies a go again as I'm not even getting my 5 a day at present.

Joemic, how are you? I hope your phlebitis has improved and your mood has stayed positive. I think the low moods are my worst side effect as they seem all consuming when they come but they do lift thankfully!

Debi2 your feather picture is beautiful you are very talented you have inspired me to try something artistic I've been looking at craft kits on Amazon as a start as I don't have a creative bone in my body though!

Hope anyone I've missed is well too it takes my muddled brain ages to write an even semi coherent post! 

Love Rose xx

 

 

 

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Re: May 2019 Start

Hi Daisydi, 

 

Thank you, I'll definitely ask about a surgical cap as I've come quite far and I'm managing the bold patches by wearing some quite funky hairbands. I didn't get on with my wig and I'm useless with hats and scarfs so definitely worth a try. 

 

Mangomum xx

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Re: May 2019 Start

Morning Mominette, 

 

Just wanted to send a good luck hug 🤗 for today. Will be thinking of you.

 

 

Mangomum xx

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Re: May 2019 Start

Hello again Mangomum

I will let you know how I get on tomorrow.

I am just about to pop 4 steroid tablets and 4 more later today!

I used to be the person that wouldn't even take a paracetamol unless it was really necessary

and now I feel like a walking pharmacy!

Be in contact soon.

Big hug from me to you

Mominette

 

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Re: May 2019 Start

Hi just seen your post about cold cap.  I have now finished chemo and from the Feb group.  I cold capped all the way through and managed to keep a full head of hair.  If you have bald patches you can use a theatre cap to protect your scalp.  Hope this helps x

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Re: May 2019 Start

Ps, good luck for the MRI. 

 

Mangomum x

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Re: May 2019 Start

Hi Ruth, 

 

That sounds really good. Just had my 3rd round of Fec and first time I've had some pains in my toes. I think my next regime (docetaxel) is worse for this so thanks for the tip!

 

Mangomum xx

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Re: May 2019 Start

Hi Mominette, 

 

We are two peas in a pod! I've had my Fec reduced due to being neutropenic on my very first cycle - not sure if I will continue with a reduced dose for the docetaxel . My cold cap hurt a lot more on my last cycle  due to being so thin with bold patches on top. I'm going to see how much comes out this time before deciding if it's worth using it. 

 

Really hope the first  cycle of docetaxel goes ok and I'll be watching for updates as we seem to be having similar issues 😕

 

Mangomum xx

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Re: May 2019 Start

Good morning all

 

I am just getting ready to head off for my MRI, so it’s a bit short..... but I am starting weekly Paclitaxol on Friday and doing some reading this weekend, have ordered Polybalm for fingers and toe nails, the website has a link to the study done which shows this can reduce the effects of the chemotherapies that come under this group (I think they are ‘T’).

 

it isn’t cheap, £41 for two tubes (including postage) but I was anxious that any effect on my toes/pain might stop me being able to get out and about. It’s like a paste that you massage into the cuticles.

 

I wanted to to let you know about it (although I’m sure many of you already will) in case you wanted to check it out. 

 

Good of luck to everybody going again this week, and big hugs to those recovering.

 

xxxx

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Re: May 2019 Start

Hello Mangomum

I see you have had your last FEC too.

I start docetaxel tomorrow. I was meant to have it last week but I got an infection so it was

delayed for a week. I did contemplate stopping it all as the last FEC treatment hit me hard.

They are going to give me a lower dose of docetaxel (75mg/m2 instead of 100mg/m2).

I see you have used the cold cap too. Sadly, it hasn't worked so well for me and the top of my

head has very little hair. The last cold cap hurt as I didn't have much hair on the top of my head

so I am not going to bother with it tomorrow. To be honest I don't have too much hair left!! Another

lady who has had all her treatments did really well with it and seems to have all her hair although she

tells me it has thinned. She had the same treatments as me and used the same type of cold cap. I 

don't know why it works for some and not others. So far, I still have my eyebrows and eyelashes which

helps. Good that I don't have to worry about shaving armpits anymore!

I am a bit nervous about tomorrow as a new drug but we are all in the same boat and I am sure we all

get nervous from time to time.

Take care

 

Mominette 

 

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Re: May 2019 Start

Hi, Ilovehoney, 

 

I've just had my last round of Fec too and had similar side effects to you with my second cycle. Touch wood I haven't had the cramps and upset tummy yet this time which like you came on almost immediately. I too have cold capped and have two bold patches on top of my head. I've got some hair bands too plus some powder top sprinkle on that is the same colour as my hair to hide the white shiny bits. It really does work.

My nurse went through the Docetaxel with me and only gave me steroids which has been increased and needs to be started the day before. I won't need the sickness drugs apparently? She said it effects the limbs and muscles more and not to be surprised if I can't move about too much for a week as it can feel like flu.

Good news the cold cap only needs to be on for 20mins after unlike the 90 mins for fec. 

 

Fingers crossed we get through this time without too many tummy problems. Half way there now!!

 

Wishing everyone else well. I'm catching up with posts now so hope everyone is OK now  and doing well. 

 

Mangomum xx

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Re: May 2019 Start

Hi all, 

I’ve been a bit quiet lately but I’ve been keeping up to date with your posts by popping on every now and then.  I’m a week post my 3rd FEC and feeling a lot better this time round.  My symptoms seem to come almost immediately following treatment and then I’ll have nothing for two days and then it hits my like a thunderbolt...constipation and diarrhoea (!), extreme fatigue, fuzzy head, nausea, stomach cramps and headaches.  Thankfully it was short lived this time round and I was feeling semi back to normal around a week later.  My next three cycles are Docetaxel and I’ve heard that the side effects can be similar but also different!  

 

One of the only pluses I’ve found to having chemo is lovely soft skin!  It could be the lack of hair or maybe it’s all those cells busily trying to rebuild themselves but it is very strange.  

 

I too have been trying to enjoy the sun by getting out into the garden and doing a few little jobs.  I know it’s a sign that I’m feeling better when I start looking on Pinterest for ideas for things I’d like to do in the garden.  I had planned to go to Chelsea this year and found myself sobbing watching Rachel de Thame as she returned to Chelsea having undergone bread cancer treatment last year. I will be there next year come what may!!!

 

My hair seems to be responding to the cold cap and ‘touch wood’ seems to be staying in reasonably well. Although my husband and I now have matching bald spots right on the tops of our heads! Thankfully an Alice band covers it (mine-not his!).  I experimented with a clip in fringe yesterday but I was nervous about going out with it as the last time I had a fringe was probably around 30 years ago! 

 

I hope everyone’s next cycles go as well as they can.  I’ve got two whole weeks till my next one and I’m planning to make the most of it.  I’m seeing friends on Saturday night so looking forward to that but also a bit nervous as I’ll be right in the middle of my lowest immunity point 😕.  I’ll just have to get my friends to battle the bar for my drinks!  My husband is worried bless him but he’s desperate for me to have a nice night out as well as it’s been ages since I went anywhere without him.  

 

Anyway, I’m off to have a very small red wine before bed.

 

Take care all. 

 

I 💕 🍯 

 

 

 

 

 

 

 

 

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Re: May 2019 Start

Hi guys, very glad to see positive results from scans etc.  It is so scary waiting for results and such a relief when the news is good (although in some ways I think even when news is not as good as you'd hoped for it is still a relief to know what you're dealing with and have a plan in place 😊)

 

I see that a few people are having their op after chemo finishes - just to reassure you, I found my mastectomy much easier than expected.  I had some minor complications resulting in an extra night in hospital but once I was home I found I didn't even need to take painkillers as there was so little pain.  For anyone who is not having reconstruction, can I recommend the Flat Friends group on Facebook?  It is a lovely, positive, supportive group and it is also secret so you can post there knowing it's not on show to the general public.  If anyone would like to join and can't figure it out, let me know and I'll point you in the right direction 😊

 

Debi - just wanted to say how beautiful your artwork is.  So delicate.  How on earth do you get such intricate cutting done?

 

Wishing everyone a lovely day 😊

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Re: May 2019 Start

Good morning everyone,

What great news Debi2, that must really spur you on, I hope RuthGr you also get positive results at your scan next week. xx Debi2 I love your feather picture, very talented lady! I hope your feeling more upbeat now xx 

Rose2020, this feeling low really gets you down doesn't it? - I find that harder to deal with than the physical symptoms, I am usually Mrs Positivity in everything, hopefully you're starting to feel more yourself xx

Managomum, those pins and needles drive you mad dont they?, I think I will call and discuss the possible  long term effects because I now have some totally numb areas on my toes. How nice to have a family celebration to lift your spirits, and feel normal. xx

Banabrain, I'm glad FEC 3 has not been too bad for you. Happy belated birthday! - next year you will have to insist on a double celebration to make up for it! I had my first chemo the day after my birthday - My children and grandchildren bought gifts that ended up looking like a care package lol! xx

Joemic, so sorry you are going through a rough patch - phlebitis is awfully painful, I do hope it has improved. Glad you are coming through ok. xx 

SP, I am so looking forward to my LGFB session, I still have not been given a date though:( I've heard the goody bags are impressive. Did you learn any good tips? I desperately need help with covering the awful black rings around my eyes - I look like Fester from The Adams Family! How lovely to be able to sing - that must give you great pleasure. My daughter has a lovely singing voice, but she certainly doesn't get it from me haha! xx

I was so looking forward to having my 5 days off and being able to enjoy them - my fatigue, low mood and ulcerated  mouth/throat effectively used up my first three days with a sleep/painkillers/sleep monotony. Yesterday afternoon my friend took me to a little baby boutique to buy gifts for my new nieces/nephew, and I managed to stay awake all evening. This morning the sun is shining and I was awake early, the ulcers are healing and I feel like I am out of the fog at last - day 11 from chemo, this one really wiped me out. But I've had the last of the Epirubicin so Im feeling positive about the next round. I am going to spend a relaxing day pottering around in my garden -the chores can wait! or better still be done someone else haha. 

Hope you can all grab every little pleasure available to lift your spirits.

 

love to all

xxxxxxxxxx

 

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Re: May 2019 Start

Morning Joemic, 

 

I’m also really sorry to hear that you’ve been having a tough time. I hope the side effects ease this week for you. 

 

Strangely, I’ve had fewer side effects after my 3rd EC. The lightheaded feeling was the worst but that has now gone! My stomach continues to gurgle as soon as any food or drink touches it and then my whole system “churns” as I digest it?! It’s quite a sound!! But, no sickness,  so I’m not complaining!! 

 

I’m going to a nutrition session at Maggie’s Centre this morning so I’ll post if there are any tips we don’t know about!!!

 

Yesterday I did the “Look good, feel better” session there and came away with an amazing goodie bag! There must be £250 worth of skin care products and makeup, all apparently donated by the companies!! All are good brands, so quite a gift!? 

 

Tonight I’m off singing a Capella with my chorus....good to have a “normal” day as I’ve not had many of these in recent months!! 

 

SP

x

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Re: May 2019 Start

Good morning Joemic

 

Its lovely to hear from you, but I am really sorry you’ve had a hard time. 

 

Sending a huge hug, and I’m sure you are out the other side for this round, and only 2 more to go (although I know at times that feels like a mountain). 🤗😘🤗

 

love Ruth. Xxx

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Re: May 2019 Start

Good morning everyone👋

Wonderful positive news for you lovely ladies, it's great to hear everyone is overcoming the hurdles this thing throws at us👏🏻.

I had my 4th EC last Friday, I've developed phlebitis so they were going to delay it but after a dose of antibiotics, it went ahead, some of the swelling has gone but it's still darned painful but can't complain as I've had way less side effects than some of you troupers.

I've felt the fatigue for the first time and like many of you very low in spirits, losing interest in everything, hence my lack of appearance on here but I feel my usual self this morning so taking the chance to post in case my mood drops again.

Only 2 more EC to go, looking forward to this stage of my journey to come to an end, as I am sure you are all visualising the end of this toxic part of your journeys.

Well lovely ladies, I hope everything continues to be as side effect free as possible. Good luck to those who are having treatment this week🤞crossed it goes well. We've got this.

 

Joemic x 

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Re: May 2019 Start

Morning ladies

Great news about your MRI Debi and thank you for being so reassuring about side effects I've turned into such a worrier since this all started! I think its spending so much time on my own and having too much time to think when normally I'm rushing and busy all the time! Hope peoples moods are lifting after treatments I think feeling low has been the worst thing after the last treatment for me too just hoping it starts to lift soon.

Sewbuddy I don't know how you are managing to work you must have so much willpower and determination I hope you've got some well earned holidays planned soon though.

A few people seem to be having scans at the moment 🤞for positive results for you all. My consultant said she wouldn't do another MRI until towards the end of treatment so about September but that I'd have heart scans again after EC and at the end of the full 8 cycles.

Take care everyone 

Love Rose 

 

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Re: May 2019 Start

Good morning everyone

 

RuthGr i have been having MRI scans after every two treatments, today i will be going for treatment 5/7 (Docetaxol, Herceptin and Pertuzumab) i think i will have another scan after number 6 - unless they decide to wait and do the next one after number 7 before surgery.

 

Bananabrain i too have got audiobooks for the days i am too tired or achey to do much.  I have also picked up with my crafting - i do different pictures - i am currently doing one for my nurse team at the chemo centre for when i finally ring the chemo finished bell.  Heres the type of thing i do

                                                      P1030586.jpg

 

I too think you are all great managing to go to work, unfortunately i have been off since treatment began because i work where there are a large number of children and elderly passing through every day and i could easily pick up infection so was advised against it.

 

Well got to get my bag packed for chemo unit today.

Take care

Debi

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Re: May 2019 Start

Hello 

 

that is is brilliant news Debi2, I can believe that the negative side effects are more bearable knowing it’s working.

 

I have an MRI on the 8th July, are we all going to be getting some sort of check at this stage? I assumed this was timed for after the 3 ECs or maybe because it’s nearly 1/2 way. 

 

Bananabrain, I also felt quite low for the first 4/5 days after this one, and like you Mangomum I struggled with staying in doors and not being able to do anything. I did get audiobooks (I find reading hard at this point too) which did help a bit and tried the adult colouring in books, which kept my mind occupied for a while, then I was gradually ousted as my two rediscovered the joy of colouring (I had treated my self to new sharp pencil crayons which they loved!)

 

Sewbuddy, sorry to hear about your side effects this time and hope they are settling down now, I am so impressed you are also managing to work, and good luck with the fundraiser. 🍀

 

SP and Joemic, hope you are both having positive weeks and are busy enjoying yourselves.

 

sending lots of love to everyone good luck to those progressing this week...July already .... we are getting there 😘

 

Love Ruth 

xxxxx

 

 

 

 

 

 

 

 

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Re: May 2019 Start

Hi All

 

My MRI showed more shrinkage, i started at  2.8cm and now i am down to 1cm.  I still have 3 x docetaxel to go (next one tomorrow).  At least the side effects are more bearable when i know its doing the trick.

 

Rose2020 don't worry too much about Docetaxel, it does come with side effects but they are doable. Everyone is different, i worried before EC but coped and i worried terribly before Docetaxel, Herceptin and Pertuzumab but i am coping, i am sure you will too.  And just remember any questions about how you are feeling call your team - i certainly did and they were wonderful, totally putting my mind at rest.

 

Take care

Debi 

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Re: May 2019 Start

Hi guys, nice to see how well everyone is doing.  Looks like most of us are near or past the halfway mark which seems unbelievable!  I really thought treatment would drag on but it seems to be going so quickly 😊

 

I haven't posted cos I don't feel like I have anything much to say!  Got through my third FEC with no new side effects but I have noticed I get very down during the first week or so after treatment.  I guess it's a combination of feeling rough physically and the emotional side of the whole situation.  It wasn't helped this time by it being my birthday a few days after my last treatment - I usually love my birthday but this year just felt really flat and a bit sad not being able to properly celebrate 😐

 

Anyway, I feel like I've bounced back pretty well now and will be getting out and about in the sunshine today 😊

 

Love to all

Banana

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Re: May 2019 Start

Morning everyone, 

Been hectic this week as it was hubby 50th and grateful to say I managed a couple of nights out this week plus a belated party for my 12 year old yesterday. Fortunately this was my good week as I had been suffering from the runs ( new symptom) during the previous two weeks! 

 

 

 

Sewbuddy, like you I have been having lots of tingling and pins and needles in my left hand and right foot? I am also going to ask to check my heart as I'm getting irregular heart beats but not sure if they are pulpitations? I did have them when I was in hospital and ecg came back normal but this has gone on longer on this cycle and I'm worried about long term damage. I love the idea of an afternoon tea to raise money. 

 

Debi2, also wishing all is good with your MRI this week.

 

Rose 2020, hopefully I will be joining the half way stage on Wednesday and the end of the Fec part of my treatment. I'll be starting Docetaxel and slightly worried about the different side effects that might bring. 

 

RuthG, great attitude and totally agree we need different things to help us through and that is changing for me with each cycle. I have been less active due the runs and not being able to leave the house much. I started to feel very down towards the end and I'm sure it was due to being on my own more and not getting much excerise. This past week I have felt really good and have been doing normal things and been out for a couple celebrations so feel mentally so much better. 

To everyone else, hope you are all doing OK and pushing on with the treatment. 

I'm looking foward to Wimbledon starting and Woman's football semi final to keep my spirits up this week. 

 

Mangomum xx