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May 2019 Start

Member

Re: May 2019 Start

Oh thank you Jencat!  My oncologist literally passed over the data sheet on the z acid and said read through and ask questions next time I see you,  but haven’t had an appointment booked yet and my next chemo is next Tuesday, so good to get some positive info. Don’t get me wrong I know they are the experts but there does seem to be so many different drugs to take! I too will have to have infusions for the next three years.  How are you getting on two years later- I really am not looking too far ahead at the moment🙂🤞🏻🤞🏻

Member

Re: May 2019 Start

Hi Sewbuddy, 

 

I was admitted after my very first fec and was in hospital for a week whilst then struggled to get an infection under control. It can happen to anyone unfortunately and just one of those frustrating /scary and unpredictable crap side of chemotherapy.

 

Please don't feel bad about not keeping up the good vibes / Im doing amazing as we have all had our dark moments (which of course is perfectly natural). 

 

Massive hug for you and anyone else feeling a bit less than a super hero right now 🤗. 

 

Mangomum xx

 

 

Member

Re: May 2019 Start

Hi Dezee, I'm from the Oct'17 chemo group. I had Zoldronic Acid every other chemo and have to go back to the chemo unit every months for an infusion of it for 3 years. I think it's offered if you're post-menopausal because of bone weakening, but my oncologist said that it strengthens the bones and helps to prevent the cancer spreading there x

SP
Member

Re: May 2019 Start

Hi Ladies, 

 

Sewbuddy, I’m sorry to read that you have been having a tough time and are in hospital. Having an “unknown” infection must be scary and frustrating in equal measure. I hope they soon trace the cause and sort it. You shouldn’t feel bad about expressing your worries and bad side effects because I’m sure we all have them...this is what the thread is for...helping each other through the ups and downs. 

 

Dezee, welcome! I’m not on the same regimen as you. I’ve had 3 lots of EC.  I’m starting NAB Paclitaxel tomorrow and will have 9 weekly treatments. I’m also hoping to have the cold gloves and slippers. The hospital provides these. They work like the cold cap for your head. I will also have 2 growth factor injections for each week of Paclitaxel to help my bone marrow produce white blood cells, as I’ve had chemo before so my bone marrow is extra sensitive to the chemo....

 

When this stage is over, I will start on Letrozole and will also be on twice yearly zolodronic acid injections. It apparently helps prevent osteoporosis but also helps to prevent BC recurrence in the bones. So, worth trying I would say. I too feel like my life has become one long round of drug taking. I didn’t take any medication prior to this trauma....

 

So, tomorrow is my big day. Let’s hope it’s a bit cooler than today! Cold gloves will be welcome if it isn’t!!! My oncologist has put an “alert” on my notes so that the chemo staff know to monitor me very closely after my 2012 reaction. No wonder I’m anxious!! I just want tomorrow over to know I’ve coped with it. 

 

SP

x

Member

Re: May 2019 Start

Hi Joemic, Ruthgr, Sewbuddy and other ladies from the May forum,

Thank you for your welcome and positive messages:

Ruthgr- I'm so glad that you are coping well with the paclitaxel, even after the 3rd round. I was concerned that weekly doses might mean there was no 'good' week; hopefully carboplatin at the same time (every 3 weeks) won't jinx that? Did the hospital provide the cool gloves etc or did you get your own? It's great news that your tumour has really shrunk in so short a time. I am due an ultrasound next Monday and another CT scan the following week, so hope it will be positive news.

Joemic - I hope things continue to improve for you and by the way the teenage age years are relatively the trickiest, much easier when you're the teacher not mum. Definitely enjoying a much nicer phase with my girls!

 

Just wanted to run this one past everyone- my oncologist has added zoledronic acid to the next 4 major chemo rounds and beyond as I am post-menopausal and it will help prevent bone loss (as a result of the chemo drugs?). Is anyone else taking this. It's weird to go from taking no medication pre-cancer to having a multitude of drugs to cope with.

Dezee

Member

Re: May 2019 Start

Hello again May Ladies, 

Although I have not posted for a few weeks I have been reading all your posts and have taken comfort from hearing so many positive stories.

RuthGr you must be so pleased with your result, the side effects are worth it, congratulations. Joemic, you have really gone through the mill with your vein/phlebitis issues. I know I would be nervous to use my BC arm to take the chemo. I'm sure the decision was taken with your best interests and hope you have no ill effects.

Ilovehunny, I believe we are on the same regime and share a love of gardening. I too said next year I WILL go to Chelsea, I have been once many years ago, it was a fantastic day!

Mangomum and Mominette, again I believe we share the same regime I had my first Docetaxol on 16th July, my dose was reduced to 80% due to previous damage to my toes. I hope you managed to ward off your child's cold, its very difficult when family members are poorly. I wish you both all the best and hope you are coping with any side effects.

Bananabrain, we too are on the same regime, I was glad to read your side effects have been minimal. That awful taste though!! Even water tastes like a dissolved paracetamol with added salt!  Fruitella sugar free fruit drops and foxes glacier fruits have helped me.

Dezee welcome, I love your idea of planning something nice for your third week, always looking forward then xx

Rose2020, I have been dreading losing my eyelashes, they have thinned quite a bit. My daughter bought me some eyelashes specifically for cancer patients. They have a wider band to glue to the lid and are quite fine and natural looking. It's just getting the knack of applying them lol. 

Louisefpage, I also had a lovely beetroot glow from the steroids, it did pass in a day or two though. Is your regime FEC-T 6 x 3 weekly cycles? That's what I'm on. 

SP it was your emotional post really that has prompted me to join in again. I have always lived by the mantra 'if you haven't got anything nice to say, don't say anything' and am always a positive person. But since my chemo on 16th I've been knocked sideways and have not found much positivity. I didn't want to bring down the tone and drop everyone's spirits! I know everyone of you lovely ladies would have offered support and encouragement. Xx I won't go into details because I know some ladies are just starting their Docetaxol and don't want to be a scaremonger! You have gone through more than most of us and are a real role model of determination and support. I hope your treatment tomorrow goes well, and thank you for starting the thread xx

Unfortunately I'm writing this from my hospital bed, I have an unknown infection that they can't get control of. I kind of feel like a naughty child that has hidden something important and won't tell the adults! I was told today that it will be another 72 hours at least and that means potentially missing our Afternoon Tea fundraiser on Sunday 😭

I thank you all for being part of this group and for sharing your stories - love to you all xxxx

 

Member

Re: May 2019 Start

Hi All, 

 

Just a quick update. Had my first Doxcetaxol yesterday and so far so good. I was so nervous of having a bad reaction (as this seems to be the main concern) but fortunately I was fine and feeling ok so far. I think the aching will kick in at some point but relieved the first one is over.

 

Sending a daily hug to everyone 🤗.

 

Mangomum xx

Member

Re: May 2019 Start

Hello Joemic

 

Just sore I assume, no one has mentioned collapsed. I only had 2 of the EC in the same arm, so don’t think it’s taken that much is a bashing, it is still sore (and darker), but the area affected is getting smaller and the pain is reducing.

 

thank you and SP, Bananabrain, Rose2020, Mangomum for your messages. It really was lovely to be as excited to share this with you all as my family!!!

 

welcome Dezee, I am on quite a similar plan, 3EC and 12 Paclitaxol, but no carboplatin. I am due my 3rd Paclitaxol tomorrow, and it’s not been too bad so far. I have been using the cold gloves and slippers (aim to reduce possibility of nerve side effects) I am hoping it’s still this hot tomorrow as it might be welcome!

 

we will be thinking of you SP tomorrow ....Hope it goes smoothly. Let us know when you can.

 

love to all

xxxx

 

 

 

 

Member

Re: May 2019 Start

Hi Ruth, I have a question for you, you know the comfrey oil you are massaging your veins with; are your veins collapsed or just sore?

I'm trying to work out whether to continue massaging my collapsed veins with that or just massaging with any cream.

At the minute i'm massaging the phlebitis part every 20 mins with e45 as that part of my skin is drinking the cream and it's still peeling a bit (tried aveeno but that makes it itch). Phlebitis continues to improve, now about 85% better hence focusing even more on the veins.😊

 

Joemic x 

Member

Re: May 2019 Start

Hello and welcome Dezee,

I'm not on the same regime as you but I am sure some lovely ladies will be along shortly to share experiences with you😊.

We all deal with our diagnosis and treatment in our own little way as have you. The important thing is is that the forum is here if and when you need it, whether it be for a rant, to share positive news or just for a bit of TLC from others who 'get' you, it's here.

I admire you for being able to teach teenagers, I have enough with the 3 I've got😂, enjoy your time off with some well earned rest and relaxation. Good luck with the rest of your treatment which I hope is kind to you.

 

Joemic x

 

 

 

Member

Re: May 2019 Start

Hi Joemic, and all the other lovely ladies who started chemo in May. I am joining this thread quite late, I previously didn't want to know too much about what might be in store for me. I thought I could probably cope better without any preconceptions. I was diagnosed with triple negative BC in April with an enlarged lymph node, and started chemo on 28th May: 3 rounds of EC and 4 rounds of carboplatin with weekly paclitaxel (12 weeks), then (hopefully) a lumpectomy followed by radiotherapy. Most of you are well ahead of me in terms of your treatment and seem, like me, to have found it more tiring as the rounds have progressed. I am due to have my 4th round with the two new drugs, and would be keen to hear how these two compare with the EC combination- as I am not really looking forward to next week! 

I have persevered with the cold cap although I've lost about half my original hair (don't like the thought of wearing a hot itchy wig in the heat), and plan to keep going.  I am lucky that as a secondary school teacher I was able to see off my exam classes on study leave before I went on sick leave - teaching is a bit too full on to mix chemo and work, and of course have a lovely  long summer holiday too.  Other than that, I have made sure that there has been something to look forward to in the 3rd week of each round - I have found that in the first week time slows as day one = stomach churnong and queasiness, steroids = you fall asleep but wake 2 hours later and have to get up as you're wide awake and have no chance of getting back to sleep, and finally day 6= fatigue and the only day I am completely bored and fed up. By the way, I am so in awe of those of you who are coping at this difficult time who have youngish children ! My three girls are in their early twenties. Anyway that is enough for now, but would love to hear what to expect in the next couple of weeks, even though our experiences are all different. Smiley Happy

Member

Re: May 2019 Start

Oh wow Ruth, what absolutely stunning news🙆‍♀️, already shrunk by half - you go girl, you've got this👏🏻, we're all beside you in spirit and will be all the way through😀.

Rose, 6 weeks of help, brilliant😀, half way through already, great stuff, that end post is in sight😊, you'll be there before you know it.

SP - we're never alone on here, it sometimes takes us time to realise it though. You are absolutely right, our diagnosis has brought us together and links us. It's horrible that we are all here but what a fantastic bunch of people we are amongst😊and would never have met (virtually) if not for this dreaded disease. There are so many beautiful people on here who have enriched our lives and although have never met truly care about each other.

It must be difficult re starting chemo after a break at the best of times, never mind the worry you have. I really hope it goes ok for you on Friday, you are a very strong💪focused lady - you've got this🤗.

 

Good luck to all this week and don't leak too much from the heat🤩.

 

Strange isn't it, no matter how hot I'm feeling or how much my skin is leaking, my temp never goes above 36.8😎. I never realised how much sweat my hair used to soak up😂.

 

Joemic x 

SP
Member

Re: May 2019 Start

Hi All, 

 

Ruth, I am truly delighted to read your great news!! I’m sure we all share in your celebrations, if only over the ether!? The chemo is working and this means everything. It makes the roller coaster of side effects and emotions worthwhile. I’m so pleased for you. You should indeed be delighted as the tumor should continue to shrink before your surgery!!! This should simplify your surgery. Brilliant!!! You definitely deserve a treat to celebrate this success. 

 

It’s strange isn't it, that we don’t actually know each other. We don’t know where we all are geographically or what we do in our lives. However, this doesn’t matter. A diagnosis of Breast cancer  has brought us together and now links us. It’s like we do know each other, if you know what I mean? 

 

I started this thread in April, thinking that I was alone on my May start and chemo journey. I had no idea if anyone would respond and join me.....but you all have and for that I am very grateful. I now know that I am not alone and I am reassured when you share the same side effects as me. I am encouraged that we can each cope and get through this. I am heartened by the goodness that is expressed within this thread by women who simply want to support each other. I feel the genuine care and empathy. It is powerful. So often in life, we resist saying what we feel....but if this journey has taught me anything, it  is that we need to express our feelings. So, thank you ladies for sharing your chemo journey with me. It is not over, but we are all getting there. 

 

Can’t you tell I’m feeling emotional?! I’m well but now have to gear myself up for chemo to start again on Friday. Whilst a 5 week gap has been lovely for feeling normal, it is also tough when the chemo restarts. I am dreading weekly chemo and am dreading how my body might react to NAB Paclitaxel as my memories of 2012 are scary.....I’m hoping that I’ll feel calmer once I get going? 

 

Take care and I hope you cope with the heat wave that is now upon us? 

SP

xx

Member

Re: May 2019 Start

That is such great news Ruth 😊  It must be lovely to see how well the treatment is working like that.  Seems like everyone is also doing pretty well - we're getting there aren't we?

 

Wishing everyone a great day 😊

Member

Re: May 2019 Start

Hi All

Ruth that is brilliant news. I don't doubt you will be walking on air after such positive results. You deserve to give yourself a few treats to celebrate! I'm sure knowing the treatments are doing what they are meant to do must be such a relief and it's nice to have a date for your surgery to aim for!

I'm finally half way through my planned chemo and have finished the EC part at least. I've had my usual week of fatigue, feeling low and no appetite after the last one but am on the up now! Lovely weather and hubbie being off for 6 weeks is definitely helping! I've got my 1st of the new lot of chemo 6th August and see the oncologist on the 7th so I'm hoping for a bit more of a plan then. I'm hoping I won't be long after you for surgery Ruth! 

Heres hoping to continued positive progress for everyone! 

Love Rose xx

Member

Re: May 2019 Start

That is great news! It may shrink even more by the end and that's great motivation to keep going. My 4th round tomorrow and not looking foward to it. New drugsl/ new side effects /heatwave / kids home = nightmare 😩🤣.

Paddling pool up and I'm getting in! 

Mangomum xx 

Member

Re: May 2019 Start

Hello all

 

I had the results of my MRI this morning and it’s good news...lump has shrunk by half and no evidence in the lymph nodes. The planned surgery (mastectomy & nodes) is unchanged and booked in for 28th Oct, 4 weeks after end of chemo (if I can keep on track with it).

 

do feel a little like walking on air, and knowing it’s working makes the next 10 weeks more bearable .... feel free to remind me of this when I start complaining by week 7 😉.

 

i hope you are all coping with your side effects and enjoying good weather ☀️ 

 

xxxx

Member

Re: May 2019 Start

Hi Joemic 

 

That is great news....I am so pleased you are almost through this and that your arm is improving.

 

I hope you start to get your energy back soon, but you are right to focus on the end. Rest and relax you deserve it 😘

 

 

Member

Re: May 2019 Start

Hi May ladies

I hope everyone is doing as well as they can😊. 

Must say this 5th one has totally wiped me out🙁, i'm absolutely shattered but am firmly focussed on my last one, then onto the tiring radio but at least I can see the end🙆‍♀️.

My phlebitis continues to improve, still got a big lump but the pain isn't there now although the discolouration looks horrible, I still think I have come through relatively unscathed up to now, just hoping those side effects aren't hiding until I finish before making an appearance🤔.

I'm rooting for you ladies on weekly chemo now (and everyone else having treatment too) that you don't find it too hard and keep the end of chemo firmly in your sights, you will do this.

Enjoy the warm weather and keep well. 

Joemic x 🤩

Member

Re: May 2019 Start

Hi SP, it's a bit of a conundrum regarding good arm, bad arm isn't it but there's no doubting the damage the epirubicin can cause to the veins. I do hope the Paclitaxel is kind to your veins, it does concern me that if the veins in both arms are ruined where would they get future blood tests from? I'll have to stop worrying about what might happen and just deal with it when and if it arises.

I have had the opposite treatment to you and the bisphosphonates in that I have been having it by infusion every other cycle but was reminded by my onc that I will be moving to the tablet form which they will give me after my next and last chemo along with the hormone (Letrozole like you). However, I will discuss this with them as I don't want to be taking 2 new drugs for the first time together as I won't know what side effect has been caused by which drug. There are so many different combinations of BC treatment isn't there.

 

Ruth - Strangely enough the phlebitis has dramatically reduced today, the vein swelling is less than half it was yesterday and the erythema is only slightly red and not the vivid red it has been and the heat is gone - sure that is a song but can't remember who sung itSmiley LOL. I think it is down to the steroids I had pre chemo yesterday, hopefully they won't inflame again. I am glad your veins are feeling better on the paclitaxol, I hope it continues for you.

 

Good luck on your Paclitaxol ladies I hope it is kind to you both.

 

I hope everyone else is coping with their treatments and that you enjoy the forthcoming heatwave.

 

Joemic x 

Member

Re: May 2019 Start

Hello Joemic

 

it is too soon to say well done...this feels like a massive achievement, only one to go 👏👏👏.

 

I hope both arms are ok/improving and you are as side effect free as possible. Have a restful weekend 😘

 

SP, I have had two weeks of the Paclitaxol now, and my veins feel so much better than on the E&C, (I’m still massaging Comfrey oil into the arm that had the most and stretching....it is improving) may depend on does and I don’t have the NAB element you mentioned, but so far so good. 

 

Mangomum, I hope your youngest is improving and you have been able to avoid it. I am starting to think about the holidays and how to manage the fatigue with the desire to be out doing lovely things, but I know they will be delighted with extra ‘screen time’.

 

Wishing everyone a happy weekend 

😘😘😘

 

 

 

 

 

 

SP
Member

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

 

Member

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

Member

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 

Member

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

 

Member

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 

Member

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

Member

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


 

Member

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

Member

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

 

 

 

Member

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

Member

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

 

 

Member

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

Member

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

Member

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

Member

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 

Member

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

 

 

SP
Member

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

Member

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

Member

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

Member

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

 

 

Member

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 

Member

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

Member

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 

Member

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

Member

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

 

Member

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 

SP
Member

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

Member

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

 

 

 

Member

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