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May 2019 Start

SP
Member

Re: May 2019 Start

Hi ladies, 

 

First, I want to thank you for all your good wishes and messages of support as I approached my first Paclitaxel chemo yesterday. It meant a lot that you cared enough to message and encourage me. I know that you understand the fear and worry that chemo brings ( especially when past chemo traumas come back to haunt me?!)  and this helps a lot, so thank you. 

 

So, I’ve survived and am still in one piece!! I had another 2+ hour wait to be treated which did nothing to help my anxiety levels. However, the cannula went in first time which was a result, as I now have corded veins in both arms to contend with.....fast running out of veins to use?! 

 

NAB Paclitaxel is different from the “normal” Taxol in that no steroids or anti sickness meds are required...pre or post treatment! This has meant that today, I don’t feel so drugged. Second result!! 

I was placed close to the nurses station so I could be monitored very closely throughout treatment. But, once we got going, all was well....no massive drop in BP so no crash team required! Third result and a HUGE relief!! 

 

I wore the cold mitts and slippers, requested by me because I play the piano. Neuropathy would be a big problem, not just because of the pain but also for my well being, as playing the piano every day is a stress reliever for me. My digital piano and headphones are real friends, as I can play and be in my own little world, without bothering anyone!? 

 

Today, I feel OK. I went for a walk this morning to get my circulation going, as I’m determined to get rid of these toxins ASAP. I managed to walk 3 miles.....fourth result!! I’m back on my salt water mouthwashes as my mouth is tingly.... so, just in case mucositis decides to return, I’ll keep this going all week. I’m resting this afternoon as I know my body is coping with a lot. So,1 treatment done, 8 left to go!! 

I hope you are all coping as best you can. I’ll let you know if I get any different side effects. 

 

SP

xx

Member

Re: May 2019 Start

Hi Sewbuddy, 

 

I really hope you get to leave to enjoy the tea party. That's an amazing amount to have raised already and I'm sure your family are really proud of you. Re side effects, it may be early days as I only had my first Doxcetaxol infusion on Wednesday, but so far my legs have really ached and are quite painful. I've been taking pain killers and having baths with dead sea salts.  I feel like I have a sore throat off and on like getting a cold feeling. My ears hurt on and off too, again a bit like a start of a cold. I got the same red rash as I did after the Fec but I think that's the steroids. I'm glad to say that I feel less toxic and sickly / nauseated than I did on the Fec and overall feel a bit better in myself emotionally. However, it's early days so I'll let you know if it gets worse or changes.

 

Mangomum xx

Member

Re: May 2019 Start

Hi Sewbuddy, so sorry to read that you're in hospital and hope you're able to escape for your Afternoon Tea tomorrow afternoon. I'm from the Oct '17 group and had 3 lots of FEC followed by 3 of Docetaxol. I found I had more side effects from T-I was in a lot of joint pain, but in hindsight I should have taken painkillers beforehand-the hospital had given me codeine to bring home with me after the chemo, but I'm allergic to it and hadn't asked for anything else instead.The next two infusions were a lot better. I did find walking quite difficult and I had Peripheral Neuropathy in my fingers and toes, which I've still got now, although not as bad as when I was going through chemo. I didn't have any of my treatments reduced, but would that be a possibility for you instead of completely cancelling them? xx

Member

Re: May 2019 Start

Happy weekend everyone,

Thank you Mangomum for your kind words, I remember feeling very concerned for you in that first cycle xx. My inner superhero certainly deserted me this week lol.

Joemic Nothing has shown up yet on cultures so I have to  complete the course of Tazocin  that was started on Tuesday,  so I will be staying in until Wednesday now but at least my family  are satisfied that I  am resting!

Those  of you that have recently started Docetaxol, I would love to know what side effects  you have had? My oncology appointment has been brought forward to discuss the side efffects before we go ahead with my next treatment, it would be nice to know how we all compare. I really dont  know what I should have expected but after a couple of visits from oncologists on the ward i am worrying that they are thinking of cancelingl it Smiley Sad

My daughter will be holding the BCC Afternoon Tea  tomorrow, i am hoping to be allowed to leave the  ward for a  couple of hours, she has already raised £190 through facebook!

SP fingers crossed, you are  doing ok after yesterday's treatment, you had an anxious build up to it this time but at least you now have a clear plan that you are happy with xx

love to you all

xxxx

Member

Re: May 2019 Start

Hi SP, 

 

Hope all went OK and you had no ill effects this time. 

 

Mangomum xx

 

 

Member

Re: May 2019 Start

Hi Sewbuddy

I hope they manage to find the pesky blighters that are causing the infection. At least if you know you might be able to ward them off in the future.

SP, I do hope your treatment went ok for you today, you have been amazingly strong going ahead with something you were dreading but hopefully with all the specialist care you should hopefully have been well looked after.

Good luck to all, I hope you have a relatively uneventful weekend, chemo speaking, but eventful with the positive things you want to do.

 

Joemic x

Member

Re: May 2019 Start

SP Sending you love and best wishes for today xx hope all goes to plan for you xx

Member

Re: May 2019 Start

Glad to help if I can Dezee x I've had 6 infusions of Zoldronic Acid and haven't had any problems with it apart from last time when I did feel a bit tired and achy afterwards-however I had that infusion only 11 days after my Dad died, so it might not have been the acid that made me feel like that.

I had some counselling after I finished treatment, which I've found useful as I found it quite hard to just go back to 'normal' afterwards, but lots of people expect you to be! x

Member

Re: May 2019 Start

Hi SP

I really appreciate that you have spent time replying to my message as having spent last weekend catching up on this forum I know you have had a challenging couple of months and not for the first time. I will ask about the gloves and slippers when I have my bloods checked on Monday ( I have a picc line so go to the chemo suite for bloods). 

I will be thinking of you tomorrow- you sound like a very resilient woman. I hope it all goes well- I have coped so far but am more anxious about the new 3 drugs next week. Keep strong 🙏🙏xx

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