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April 2019 Chemo Starters πŸ’–

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

Runningsue42 glad you have got number 5 under your belt, only one left to go.  Have you already had surgery? Will you be having Radiotherapy? Good to hear antibiotics are working and you feel up to doing the 'Race for Life'. What a lovely thought that you are putting all our names on your sign.  I don't think i could do even a 5km just yet!  

 

I haven't been on here for a while, i was in A&E on Monday evening with a suspected infection after temp. went to 38, luckily after all the tests, chest x-ray etc. i was fine and allowed to go home at 3 in the morning.  I have been catching up on sleep- which as taken a while to be honest.  Side effects this time have just been aching neck,head,hips and knees, along with feeling tired.  I am not sure the tiredness is down to being bored though.

 

I hope everyone is having a good weekend and not having too many side effects.

Take care 

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Good afternoon ladies

Well im pleased to say my bloods were ok and i went ahead with chemo number 5 yesterday.  Im glad i was only delayed by 3 days and not a week.  The antibiotics have started to work on the insect bite (there has been no more green discharge). Billy Bob is also healing nicely 🀣🀣  Yesterday i watched 3 people ring the end of treatment bell and i know ill get to do this in 3 weeks time.

 

I know ill feel grotty tomoro once the side effects have started (already have hot sweats and mouth ulcers😒) but ive decided to still take part in the race for life.  I have "Sue's Pink Army" of my children, family and friends taking part with me.  I hope its ok with you all that ive decided to write the names of all the ladies on this forum on the sign that i wear on my back - "who are you running for" - we are all on this journey together and i want u all to know that you have all helped me along the way with advice whether ive been feeling low emotionally or about my PICC line clot or any of the side effects from EC or docataxel.   If i could i would post a photo of the sign and of the race.

 

Take care ladies

Sue xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi All

 

Catching up on threads.

 

Susanmanchester - I know exactly how you feel worrying about seeing your surgeon again.  I have such bad memories of seeing my consultant/surgeon at the point of diagnosis.  However, the next time I saw her after chemo 5, to plan surgery was a much more positive appointment.  I couldn't believe the difference and hopefully it will feel the same to you.  Hold the faith.

 

Lynsh - hope you are past the worst after chemo 5 and you can get back to your running soon. I also had a prescription for Gelclear to help with the mouth after chemo 1 but haven't used it since.  I didn't think it helped me at the time on FEC but the overwhelming nausea was the centre of my world for 9 weeks so not sure I would have even noticed!  My taste buds are way worse on Docetaxel but definitely no nausea so I'll take it.  I think I'll dig out the gel clear again and give it another go so thanks for suggesting it Smiley Happy   

 

RunningSue - really frustrating about your delay on chemo 5 Smiley Sad   As you say, better to be safe than sorry especially during chemo.  I hope your blood tests are all good, you can have chemo tomorrow and be right back on track.  It's good that they haven't automatically delayed you by a full week as I hear happens to quite a few ladies.  I also hope you can get back to your running soon but if not just keep walking.  It will make you feel so much better in yourself.

 

I'm feeling a bit better today in myself.  Steroids must be starting to get out of system now I'm on day 8 post chemo 6.  2 weeks today and I will hopefully have my surgery (lumpectomy and sentinal node clearance), bloods being ok of course.  I can't wait to get on with it now and get what ever is left cut out of me, it just can't come soon enough. My consultant (also surgeon) did warn that it is really common for a second surgery to be necessary if there are not clear margins around the tumour or a need to take out more lymph nodes. Obviously everything taken out is tested thoroughly in the lab afterwards to ensure clear margins and I will get my results 3 weeks later.  Apparently the current statistic for repeat surgery is 1 in 4 women.  Just putting it out there so we don't all worry ourselves sick if it should happen to any of us and thinking it's really unusual.  I'm glad she told me as I can now prepare myself for that if necessary.  I was talking to my breast cancer nurse and apparently the cancerous tissue does not look any different to healthy tissue during surgery but feels very different to the surgeon; I was really surprised to hear that.  Obviously any guiding wires inserted on the day, MRI, ultrasounds, mammograms and other useful tools are availalbe to help the surgeon pinpoint and remove it all during the operation which is really reassuring. 

 

Talking of surgery I went to M&S outlet yesterday and I saw a post surgery bra in my cup size but one size larger on the back.  It was on the bargain rail for Β£5 (couldn't believe my luck!).  If feels very soft and comfortable with wide straps and good support.  Figure it's worth a try and the larger back size should give me a bit more room with any swelling.  A friend of mine bought me 3 soft sleep bras when I was first diagnosed which I have also put aside for after surgery.  She had bought for another friend who had breast cancer surgery and desribed them as the most comfortable bras ever.  So now at least I feel prepared with 4 bras. I assume I'll be wearing them day and night for a couple of weeks until the scars heal. 

 

Hope all is well with you all.   Take care lovely ladies xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hello all 

thanks Bramley for kind thoughts ... have to see my surgeon before I start rads just a check-up nothing sinister but already getting anxious . Totally irrational .. just brings back bad memories I guess . Not sure can ever feel like I did but not being fearful would be a good start ! X 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi girls, 

sorry ive been off radar. Just dealing with after effects of chemo 5 and kids being off school!! What a combination!! πŸ˜‚ 

however feeling ok ish!! I’ve been using gelclair for my mouth which is helping massively with the sore mouth and also taste buds. If you can get hold of it from GP I would highly recommend. It’s a gel mouthwash but helps prevent that horrible coating we all seem to be getting. Don’t get me wrong,  my taste isn’t perfect but definitely better than last time. 

Sue, sorry I never replied to your previous post about running. I’m really missing it just now but have been a bit more accepting that I’ll need to just wait till I’m back on my feet properly before I think about it. Suspect I’ll be a couch to 5ker by time I get back out but worth it all the same. I just love it and it’s my wee escape. I’ll try and walk for the time being. Well done on you doing the race for life on Sunday, you’re amazing! Don’t even think I could consider that just now. Also hope the infection clears up soon and Billy Bob behaves himself! 

 

I hope you’re all ok and getting through this week ok. Love to everyone who has a chemo this week. Hope it all goes smoothly. πŸ’—

Member

Re: April 2019 Chemo Starters πŸ’–

Hello ladies

I was due to have my 5th chemo yesterday but unfortunately ive got an infected insect bite (not Billy Bob the blister - he's burst!!) So im now on antibiotics. I need to get my bloods checked again tomoro and im booked in for chemo on friday so fingers crossed i can go ahead then!!  This is the first time ive had chemo delayed so im gutted but like the doctor said the infection needs to clear up as the antibiotics and chemo affect the white blood count in different ways and i could end up poorly and being admitted to hospital. 

 

Im taking part in the race for life on sunday and ill probably feel grotty but ive got my children, family and friends taking part with me and im determined to do it even if i have to crawl!! Ive ran the race for life many times before and i signed up in january on the day my mum was diagnosed (she passed away 3 weeks later) and just before i was diagnosed and ive raised Β£300 so far. 

 

Hope you lovely ladies are all keeping well

Take care

Sue xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Our group has been a bit quiet for a couple of days so hope everyone is ok?

 

Susanmanchester - you are so nearly there with chemo Smiley Happy  You are right, we may feel and look rubbish but it will soon be over.  Can you imagine how it will be to look and feel normal again! 

 

Day 7 post chemo 6 and I've been feeling a bit sorry for myself this morning.  Not sure why as I slept well and still got out on my usual run first thing.  I find the couple of days after finishing steroids, emotionially exhausting and I overthink everything.  I guess that's what they call a steroid crash?  Not sure if anyone else experiences that effect each time? 

 

Anyway I've sat around this morning, watching TV which definitely isn't me at all and I'm sure it's making me feel worse!  Even had some pain in my legs and knee joints which I haven't really suffered with on Docetaxel.  So just had lunch (taste buds are completely shot) and have decided to get myself off the sofa and out to the shops!  I need to buy a couple of birthday presents and at least my mind and body will be active and I can chill a bit more this afternoon.  Will need to make sure I avoid anyone with germs though! 

 

Hope all those having chemo this week are doing ok and those experiencing pesky side effects are coping. xxx

Member

Re: April 2019 Chemo Starters πŸ’–

I have chemo 11 on Friday then one more after that . I am desperate for it to be over but also scared ... have a three week break then radiotherapy . Have got away relatively lightly have even kept most of my hair thanks to cold cap but no lashes no eyebrows and tired tired tired after 3 FEC and 7 Paclitaxel . In short I look and feel rubbish and seems such a long time since life was normal . Good to know not alone though best to all x 

Member

Re: April 2019 Chemo Starters πŸ’–

Evening Ladies

 

I feel like we all need a virtual group hug to support each other in our group xx 

 

I don't think anyone can understand the effect of the emotional side of a cancer diagnosis unless you have been actually diagnosed with cancer.  The shock, denial, why me, what could I have done differently and then everything changing overnight in your life and feeling you have no control over anything.   I only said to my Husband last night, I wish I didn't feel afraid all the time.  I've felt afraid since I found the lump at the end of January and still feel afraid every day.  It's just such a roller coaster journey.  I've always been such a positive person so just trying to fuel some of that positive energy into getting through each day and taking control of anything I can.  Sue - we could have done with a photo of Billy Bob to make us smile Smiley Happy

 

This forum is great for supporting each other as only other people with breast cancer will understand.   We can do this lovely ladies, each of us on our own journey, however long that takes us to move on with our lives.  We need our normalities back and I don't think any of us will take anything for granted again.  Sending lots of love and support to you all xxx

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi ladies

Sorry to hear u have all been quite emotional lately.  Ive had days were ive sat and cried - the emotion of it all but also i feel so fat because of the weight ive put on with the steroids as im usually so active. Lynsh can i ask how u have coped with not being able to run? I usually run 3 or 4 times a week but just not had the energy.  Running is a big part of my life for 10 years and ive missed it and i know ill get back to it once my treatment is over but sadly dont think ill be doing the half marathon im signed up for in september!!  I did walk with my running club but ended up with a humongous blister as my trainers were tight from my feet swelling up on the steroids.  I saw my oncologist on friday and she couldnt stop staring at my foot!! If i could post a photo on here i would to make u all laugh.  I nicknamed it Billy Bob and he burst yesterday🀣🀣🀣.  

 

I also found ive been emotional at the fact that tomoro is chemo number 5 and in 3 weeks ill have my 6th and final chemo.  Its been the main focus for me for so many months and i think ill be sad to say goodbye to the girls on the chemo ward as i see them every week and chat to them when im getting my PICC line cleaned.  I still have radiotherapy in september but ive had my surgery in march so im almost two thirds of the way into my treatment.  

 

Ive really enjoyed chatting to all u lovely ladies on this forum and its been great that we've been able to help and support each other.  I feel emotional that we are all coming to the end of our chemo journey.

 

Take care ladies, speak soon

Sue xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi LynsH

 

I also had the same problem with needing Mirena taken out, but it was changed to copper coil straight away and its been absolutely fine.

 

I'm finding I'm getting more emotional now as the chemo goes on, but I don't know why!

I have days where I just sit and cry, and I've also found nothing stops it. I just hide at home in these days!

I've been lucky to be referred to a lovely psychologist whom I am seeing monthly, my breast care nurse put me in touch with her.

 

I think moods will be very up and down in the months and years to come and it's still just one day at a time for all of us. 

 

Grateful for the support on the forum, I can be more open than with friends and family as they are all still struggling with the diagnosis as well. 

Member

Re: April 2019 Chemo Starters πŸ’–

Christine, 

I can also totally empathise with your emotional state. Everyone needs us to be the strong ones but sometimes it’s just nice to be able to rant and tell people you don’t want to hear their stories, good or bad. Everyone’s experiences can be so different of this. I had an outburst in the doctors surgery the other week. I had to get my mirena coil removed and had to go back to see consultant as nobody seemed to know what kind of contraceptive was safe for me! Turns out pretty much nothing other than copper coil or blooming comdoms!! πŸ˜‚ But she started speaking to me about side effects of tamoxifen and recommending stuff for vaginal dryness (sorry if TMI!!πŸ™ˆ) as its going to put me in an induced state of menopause. I don’t know why but this just totally hit home that at 37 I’m going through a major life change and there’s absolutely nothing I can do about it. I had always wanted another baby too and I think the reality hit home that’s never going to be a possibility either as I’ll need to be on tamoxifen for at least 5 years. 

I went from hardly shedding a tear since my diagnosis to being unable to stop blubbering. Thankfully the doctor was so lovely but she must have been a bit like, blooming heck love!!! πŸ˜‚

 

i think my my point is, we will all have our breaking point. This is what we’re all here for. To get each other through. I am also stressing about putting on too much weight as literally nothing bloody well fits!! But I’m normally a runner so really missing this for both my mental and physical health. I know we will all get there in the end but it will take time. I feel reassured I’m not alone with you lovely ladies and we will get there eventually. 

Big hugs for week ahead girls! πŸ’ž xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Christine

 

So sorry to hear you are struggling emotionally, i think it is part and parcel of the treatments.  I too have had the ups and downs sometimes just bursting into tears.  I know what you mean about people always wanting to tell you about 'a friend of a friend', for some reason they must think you want dwell, when all you want to do is scream in their face to shut up.  I have now put it down to the reason that they don't really know what to say.  

It is natural to feel scared to start your treatment again, I was scared before the very first time i had chemo then again when i changed on to Docetaxel - is just fear of the unknown - but these forums help, they show that every thought, emotion, side effect is a normal reaction to what we are going through and we are here to help.  Don't be alone on this journey, it sounds like you have a wonderful partner, and we are here too.

Hope you have better days ahead

Take care

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone,

I have tried to take a week off from this forum so only just catching up now. I’m so sorry to hear that a lot of you are struggling with your new chemo. But well done to those that have finished, it reminds me that there is an end! We don’t have a bell on our unit either but I’m not sure I’d ring it if there was. I’m still at the start of treatment and have a long way to go but I’m still going to celebrate the end of chemo next month with a glass of Nosecco (alcohol free prosecco!).

 

This week was the first week in 3months where I didn’t have Chemo. I went away with my partner and it was amazing to just get away. We went to Swanage in Dorset for a couple of days and it was so relaxing. He then stood by my side whilst I was bridesmaid to my friend this weekend. 

As amazing as it was, I have really struggled emotionally. I have been so positive and held it together for him and my family but towards the end of this week I have started to crack. Such a mix of things. I was looking at photos of my this time last year and it’s got to me. I have realised how much weight I have put on and how different I look. I just don’t feel like me. All the bridesmaid photos keep coming through and I just keep crying. I think my boyfriend is struggling with the amount of reassurance I need right now. 

To add to this I keep getting told stories about other people that had breast cancer and the last couple I have really struggled with. I don’t know why people insist on trying to relate to us by telling these stories of friends of friends that they know. I can’t help but ask how they are doing only to hear the worst. Has anyone else found this? I was having my make up done for the wedding and the makeup artist told me a story about her friend and I couldn’t tell her to stop because I was too polite. The rest of the day I felt tainted by this story and I didn’t offload to anyone because I didn’t want to ruin their day either. 

I’m also so scared to start chemo again on Wednesday. You guys have reduced this fear by explaining that FEC hasn’t been all that bad but I’m nervous. I think having a week off has been good in so many ways but also has made me overthink. 

Sorry to rant. I just keep crying and thought, who better to explain this to than the girls going through it with me! Sorry for the long message 

πŸ’–

Member

Re: April 2019 Chemo Starters πŸ’–

Good morning everyone

 

Kelly my heart goes out to you and your brother, wishing you both the strength to get through this awful time.  Just remember we are here for you whenever you need any support.

 

Bramley i think treatment 4 and 5 side effects were very similar, although i have been getting jaw pain in the night which i think is down to the Zarzio (white blood cell) injection.  I am going to call the BC nurse and ask her today.

 

LynsH how many steroids do you take and for how long? I just take 16mg daily for three days, one day before chemo then the next two days.  The family break sounds lovely, i think i would be sat in the hottub every evening.  Hope you have a great time and lets hope its side effect free🍹

 

Wishing everyone a lovely day and hope the ladies that haven't posted in a while are ok.

Take care

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Evening girls, 

Kelly, so sorry to hear about your brother. It’s not fair is it. Wishing you both a speedy recovery and back to full health very soon. Can’t imagine how difficult that is to deal with on top of your own diagnosis. 

 

Bramley, you sound like you’re doing well on day 4! 22k steps! That’s amazing! I managed just over 11k today but I’m blooming exhausted now! It’s not even that warm here in Scotland so I’ve no excuse!! πŸ˜‚

 

I’m on day 3 post treatment 5 for docetaxel. Not got too many side effects yet. I always get a funny voice for a couple days which is weird and I’ve got that again. Not sure if it’s fatigue or side effects of steroids. He’s reduced my steroids this time so I just have 2 to take tomorrow and im done. 

Like you im starting to take my paracetamol tonight and pre-empting the joint pain. Try and get ahead of the game. We have a wee family break planned leaving on Friday to Lake District  so I really want to feel ok for that. We’ve booked a lovely lodge with a hot tub so hoping that will help with the joint pain if it is bad! And perhaps a g&t whilst I’m doing so!! 

 

I hope everyone else is doing ok. Sending lots of well wishes to you all and like Bramley says, we are nearly there. And we will be around to anyone else who has a few more sessions left to support them to the end of their journey too. It’s a team effort after all. 

 

Sleep well girls. πŸ’—

Member

Re: April 2019 Chemo Starters πŸ’–

Hi All

 

Hope everyone has managed to enjoy the weekend in this lovely weather.  

 

Kelly - glad to hear that you can finally had your CT scan and hopefully this means you can crack on with your weekly chemo.  It's better to be safe and it really doesn't matter that you will be a bit behind in our group, as long as we all get there in the end.  It's a very individual journey and hopefully you will be back on the right track soon.  So sorry to hear about your Brother.  It truly is an awful disease that affects so many.  I had no idea of the world of cancer or oncology  before I was diagnosed.  I find it terrifying that statistics predict that 1 in 2 people will develop cancer in their lifetime.  How can that happen?  Hopefully one day they will find a way to prevent it even happening through routine tests. 

 

Debi - hope you have turned the corner on the side effects of chemo 5 (Docetaxel)?  Did you find round 5 slightly easier than round 4 with side effects?  You are getting ever closer to finishing chemo and August will soon be here.   

 

I'm doing ok on day 4 post chemo 6.  I know tomorrow will be the test on day 5 but so far I seem to be following the same pattern as post chemo 5. Bit of a sore throat, slimey tongue, taste buds going again and tingling in fingers.  No joint aches, pains, flu type symptoms or issues with feet though.  I'm still on the steroids (last one tomorrow) and have done 22k steps today.  I feel fine but will relax and watch TV for the rest of the evening.  Taking 2 x paracetemols just before bed at night (after temp check) which seems to help me get a good nights sleep in the first few days post chemo.  Forgot to do my daily injection this morning so have done it around an hour ago which probably isn't ideal!  I've cut my finger nails pretty short now and applied a dark pink nail varnish as I noticed they were looking very yellow with chemo rings around the top of the nail.  I've also painted my toe nails in an even darker shade but they don't seem to be yellow or showing any signs of stress yet.  I guess that may come in the next few weeks!  This chemo just keeps on giving doesn't it!

 

Tomorrow is the start of another week.  Good luck to those having chemo this week and hope everyone else is coping as best they can with the side effects.  We are all one step closer to finishing this journey  xx

 

Member

Re: April 2019 Chemo Starters πŸ’–

Evening all

Well I finally had my heart CT today, so fingers crossed, all will be ok, so I can crack on with my chemo.

I am miles behind you all now, with me having such a long break from it. I’ve had 3 sessions and will be going onto weekly Paclitaxel for up to 12 weeks! That’ll take me up to around October. 

Im also unsure about ringing the bell, as I’ll still have 3 weeks of Radiotherapy to do afterwards....I’ll decide nearer the time, but will defo be relieved at the end of it all.

On top of this, I’m supporting my brother who has been diagnosed with lung cancer, he had his first chemo last week. Life can be so blummin cruel can’t it, but we are close and there for each other. We’ve already lost our Mum to lung cancer, so feel we’ve had our share of this awful disease. 

Anyway, wishing you all well with your progress and it’s nice to know some are so close to the end of chemo 😊x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

Congratulations Bramley no more chemoπŸŽ‰.  I still have 2 more to go as i was on 3 x EC then 4 x Docetaxol, Herceptin & Pertuzumab.  My last chemo won't be until Aug 13th! but when it comes i will definitely be ringing the bell πŸ””. 

 

My side effects kicked in last night so i have been a bit worse for wear today.  Hopefully they won't last long.

 

Sorry to hear some of you are having bad side effects too, just keep thinking of the good days to come.  I keep a diary every cycle so i can look back and see how bad and how long they lasted last time, it sort of gets me through the not so good days.

 

Well i am taking myself off to bed early tonight, i will listen to my audible book and drift off.

 

Good Night 

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Afternoon all

 

Another sunny day and I'm being brave again and sitting out under the awning bald.  Actually there may be something happening on the hair growth!  I definitely have quie a few tiny hairs sprouting through and they are looking darker Smiley Happy.  I'm now on day 2 post chemo 6.  Rome wasn't built in a day but I keep inspecting it every morning after washing/conditioning my scalp and there is definitely something happening.  It's gonna be a long journey but it's a definite start!

 

I appreciate that ringing the bell after chemo is a very personal and individual decision and I think everyone should do whatever feels right for them.  I was undecided for a long time but made my decision the night before to ring it to mark the end of the chemo phase of treatment, although I know there is still a long way to go. 

 

Phet - glad you are feeling better in your 3rd week and have been keeping busy with your academics.  It must make you feel normal again and back to your pre cancer diagnosis life for a few hours to be able to work.  You are so close now to finishing chemo, just the last one next Tuesday and you can ring that bell loud and proud Smiley Happy 

 

Pollensa - sorry you are feeling so rubbish after your first round of Docetaxel.  Hopefully Oncologist can help for next round.

 

LynsH - good luck for your 5th chemo tomorrow.  Hope the side effects are less after this one, they were for me on round 5.  And if they aren't, its another one checked off and getting ever closer to finishing chemo.  Your kids will love to see you ring that bell Smiley Happy

 

I'm doing well 2 days post chemo 6 but I know the pesky side effects may be just round the corner on day 4-5.  I went to a circuits class at Maggies this morning, followed by yoga, reflexology at the hospital (so relaxing!) and then for my usual walk around my neighbourhood after lunch.  I'm definitely tired going to bed, but feel better to keep moving and sleeping well even on the steroids Smiley Happy

 

Stay positive everyone.  We are getting there xxx

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all! Sorry I've been absent - I suffered the Docetaxel for the first ten days but then felt quite a bit better and well enough to do a bit of work (I'm an academic - a historian) so that's kept me distracted for the past few days. 

 

Bramley - congratulations on finishing chemo! I also am having chemo first, and my last one is next Tuesday. I also feel unsure about ringing the bell due to it only being the end of one leg of treatment, but your experience convinces me that it will feel cathartic to mark the occasion in some way. 

 

Lizandsarah - I am sorry you are suffering so much from the Docetaxel, that is very frustrating

 

LynS - I've found that taking an antihistamine (Loratidine) helps with the bone pains from filgrastim. I take it once a day, in the morning, throughout the cycle and I have not suffered the bone pain from the injections much at all

 

Hope everyone has an enjoyable day today, without many side effects!

Member

Re: April 2019 Chemo Starters πŸ’–

Hi girls, 

I’ve got my 5th session tomorrow, will be relieved when this one is done. I really struggled last time with side effects. 

I had heard do filgrastim also gives you sore joints. I saw oncologist yesterday and he recommended starting pain meds proactively rather than waiting for the psi to kick in so I’ll be starting my pain meds from Tuesday onwards to avoid that. 

Hate the build up to chemo day. I get this horrible dread in my tummy. But on a positive note, after tomorrow I’ve got one more session and by god I’ll be ringing that bell!! And having a right good relieved cry into the bargain! The kids will be there so I think it’s important for them to be involved and marking the occasion. They’ve watched mummy be unwell for the duration of her chemo and hoping the only way is up now!! πŸ’ͺ🏻 We are all getting there and hopefully coming to the end of this tough time. 

Hope you’re all feeling ok (as well as you can be this week)

xx

Member

Re: April 2019 Chemo Starters πŸ’–

Evening ladies,

 

Well, 2 weeks tomorrow since docataxel and I'm still feeling rubbish. No taste, no energy ,blurry eyes, all i want is to sleep all day!

 

I'm seeing oncologist next week and I will definitely be expecting some changes before next dose!

 

There's no bell ringing in my unit and, from a personal point of view, I dont see much to celebrate about finishing chemo. There's so much treatment still to endure. Maybe after being cancer free for 5 years thats when i would celebrate.

 

Pollensa x

Member

Re: April 2019 Chemo Starters πŸ’–

Thank you everyone for your lovely comments and support.  I was far more emotional than I thought I would be finishing chemo but it's such a roller coaster journey for us all.  I will be willing each and every one of you to finish chemo and will celebrate with you virtually Smiley Happy xx

 

Liz - blimey the side effects of Docetaxel certainly present early for you don't they with your hands and feet already tingling.  Yes keep trying to get hold of your Oncologist, it's important to discuss the ongoing side effects to see what can be done to help.  Hope your iron levels start to rise.  Drinking orange juice with iron rich foods (meat and fish, dark green veggies and eggs) is supposed to help the body absorb iron more efficiently.  May be worth a go if you are not doing so already?  Funny you should mention dexterity with your hands.  I am so clumsy at the moment, I keep dropping things.  I dropped a glass and a saucer last week and I keep catching my arms on the oven.  I've got 5 burn marks on my inner arms and I keep having to tell people I'm not self harming, I'm just clumsy (side effect of chemo) and keep burning myself.  Hope they believe me, lol...  Anyway keep smiling Smiley Happy xx

 

Sue - Good luck for Docetaxel next Tues.  I can't believe you have been so unlucky to still be suffering with nausea on the change of drug.  FEC is known to cause nausea but I was assured it wasn't common for Docetaxel and hoped you would finally be rid of the nausea after round 4 like I was. I feel like a completely different person without nausea.  I'm having my surgery on Thursday 25th July.  It's 3 weeks and 1 day after chemo 6 so pretty tight timeframe, bloods willing obviously.  Having the blood test on the Monday before surgery on Thurs so hopefully all will be fine.  All my other blood tests on the Monday before chemo on Weds have been good so just need to think positive this time round.   Yes I'll be having 3 weeks of radiotherapy I think but not for 6-8 weeks after surgery as scars need to be fully healed first.

 

Interesting times - gosh I didn't realise that all Oncology units don't have a bell to ring.  Like you say, you would like to think that everyone finishing that part of their treatment would want to celebrate somehow.  Everyone in the 2 connecting rooms of chemo were clapping and smiling when I rang the bell today.  I felt quite choked by their reaction but it was so lovely to see happy looking people celebrating with me.  Good luck for round 5 chemo on Monday.

 

I'm wide awake tonight with the steriods and hence such a late post Smiley Happy  Must get some sleep now.  Mammogram and ultrasound tomorrow to check on lump.  Never had so many medical appoints in my life.  5th appoint this week tomorrow! 

 

Night night xx

 

 

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Re: April 2019 Chemo Starters πŸ’–

Congratulations on finishing chemo Bramley and glad you were able to ring the bell xx

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Re: April 2019 Chemo Starters πŸ’–

Hi LynsH

 

Missed your post about pain, the filgastim pain tends to occur more in flat bones, such as ribs, sternum, shoulder blades as well as hips. Sometimes it even feels sore to touch them. I experienced it on the FEC cycle where my blood counts were low. I had a look at the leaflet as well at the time from the box.

 

I found the Docetaxol tended to be in all the lower joints and muscles.

 

Hope this helps and you feel better now

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Bramley

 

Congratulations on finishing all your chemo, I hope your surgery goes well in a few weeks.

 

I had the reduced dose of Docetaxol last friday, and within12 hours the hands and feet tingling and burning started again! Making doing anything that needs dexterity difficult, even ironing, it's like my fingers don't belong to me anymore! My family just laugh at me, which is lovely and normal.

 

Much less pain this time fortunately, but only regained a small bit of taste for 48 hours, just fruity things like strawberries, all gone again now. Still tired, but it doesn't seem as overwhelming as last time so far, mind you it hit me more in the middle week last time so waiting and seeing.

Just waiting for an appointment to discuss with  oncologist before next chemo appointment, just trying to chase as there is always an excuse of having a backlog! Will give them till Friday then will ring again. 

 

Quite anaemic as well now, so having the breathlessness and lightheadedness to add in as well, they've threatened to transfuse me if it drops any lower. Could quite happily have steak if I could taste it, seems a waste at the moment!!!

 

Still I'm continuing to smile and have a giggle with my friends, so it's not all bad 

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Bramley

Well done on your last chemo and for ringing the bell!! It seems such a long time since we all started chemo and we are all coming to our 5th or last chemo.  I have chemo number 5 on tuesday.  It will be my 2nd docataxel.  Im still having nausea but ive had it for so long (since day 1 of chemo) that im used to it by now!! I cant wait to wake up one day and realise i havent been nauseous for a day or 2!!  Im so pleased u decided to ring the bell.  Ive seen people ring it when ive been on the chemo ward and i cried for them!! I know im going to be an emotional wreck when it comes to my turn!!  Do u have a date yet for your surgery? Are u also having radiotherapy?  I hope u dont suffer now with the side effects and u rest up for a few weeks.

 

Hope everyone else is ok and managing to sit out in the sun.

 

Take care

Sue xxx

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Re: April 2019 Chemo Starters πŸ’–

Bramley,

Huge congrats on finishing what will probably be the worst of all three treatments! They don't ring the bell in my unit. The nurse told me it's because some people are having palliative chemo and they don't want to upset them... Personally I think they would celebrate with anyone coming to the end of that particular journey. 

 

NikNak - I have suffered nausea, heart burn and other digestive upsets with each round of FEC, not to mention sore mouth and throat. That's all I'm having so 4 doses down and due to have the 5th round on Monday. I am working but take the first week of each cycle off as I generally can't get off the sofa (or sometimes even out of bed!) Apart from this last round, I was back at work within a week. I get tired and some days are worse than others but hopefully you will find things improving now!

Sharon 

 

Good luck and talk to your BC nurse or oncologist.

Sharon 

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Re: April 2019 Chemo Starters πŸ’–

Our monthly thread is pretty quiet so just hoping everyone is doing ok? 

 

Debi - hope your 5th chemo went well yesterday and you are doing ok?  I know any side effects are usually delayed by 4-5 days on Docetaxel.

 

Liz - hope you have turned a corner on your last dose of Docetaxel?   When is your 5th dose or you may have already had it by now?  Hope the reduced dose helps prevent or reduce some of the side effects too.

 

I had my final chemo (no 6) of Docetaxel this morning at 8am!  Was glad of a first appointment as there were no delays - first time in 6 doses Smiley Happy  I've been asking for all my blood tests and chemo doses to be in my right arm (same side as breast tumour) as I haven't had surgery yet.  Figure I need to use up the veins in case they have been damaged administering chemo as I won't have the option to use that arms for any blood tests post surgery.  I wasn't sure if I wanted to ring the bell this morning as it's no way near the end of treatment for me.  I started with chemo before I have surgery and radiotherapy so I'm now half way through.  Last night I made the decision I would ring the bell.  I'm so happy to finish chemo that I wanted to celebrate in some way.   I also wanted to bring a smile to other chemo patients faces who may be just at the start of what feels a daunting journey.  I rang it very loudly three times.  Everyone smiled and clapped which was just so lovely.  I thanked all the nurses and wished all the patients all the very best before walking very quickly out of Oncology without looking back and before the tears of relief started in the safety of my car.  

 

I just need to be super careful now for next 3 weeks, keep active, hydrated and eat well so I can give myself the best possible chance for my bloods to bounce back and be well enough for surgery in 3 weeks time.  My taste came back slightly in the 3rd week which was so nice.  Really not looking forward to everything tasting of nothing again and horrible in next 2 weeks Smiley Sad.

 

Stay strong ladies, I hope you will all be finished with chemo soon xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi NikNak - hope you will start to turn a corner on the FEC very soon.  The worst of the side effects are usually in the first week so hopefully you are past the worst now.  I was lucky and didn't suffer too badly with exhaustion/fatigue on FEC. I've kept pretty active throughout chemo which I think has definitely helped.  If you can, try and get out for a short walk in the fresh air every day.  Even on my worst days of chemo I found that I always felt much better after a walk in the fresh air.  Sometimes I didn't think I couldn't face it but made the effort and I found it actually helped my energy levels.  It's amazing how it just becomes part of your daily routine if you keep at it.  Good luck xx 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Niknak, 

 

I found I was a bit more tired and just not quite right (didn't get any nausea) over the first few days, then bounced back to normal. 

 

Unfortunately the docetaxol has been far more problematic and they are thinking of stopping it at cycle 5, even though they'd reduced dose by 40%,im still getting multiple side effects. Lucky me! 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Bramley 

 

thanks for your reply. Did you have any energy on the FEC, I got up this morning but am now back in bed. The nausea has past, I just can’t do anything physically, even walking upstairs is exhausting. I’m hoping this will pass soon as it’s 5 days since I had my first dose of FEC 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi NikNak - I think one of the most common side effects of FEC is nausea but some people have very few issues with it.   I'm on the FECT regime so had 3 rounds of FEC every 3 weeks and now on 3 rounds of T (Docetaxel).  I suffered terribly with nausea for all 9 weeks on FEC - felt just like morning sickness from morning to night).  I managed to eat ok but I really struggled with drinking water or anything much for some reason.  There are plenty of anti-sickness meds they can prescribe so definitely speak with your oncoloigst and hopefully one of them will work for you.  I eventually ended up on Amend on round 3 which is apparently the rolls royce of anti-sickness.  I can't really say it worked for me.  On the plus side, I'm now on Docetaxel and haven't suffered at all with nausea.  I think I'm in the minority of women who prefers Docetaxel to FEC as I no longer feel nauseous which is a huge plus.  Hope you manage to get it sorted. 

 

Sue - glad the swelling on your hands has reduced and it doesn't appear to be related to your picc line or blood clot.  That is such a nightmare if you are feeling sick on Docetaxel having also suffered with nausea on FEC.  You must be completely exhausted to have suffered that way for 11 weeks. The Nurse Practitioner told me that Docetaxel doesn't usually cause nausea in the same way as FEC as I was really worried about it.  How far are you post first dose of Docetaxel? 

 

Louise - yes, my scalp felt very bristly when it was first shaved but then all the hairs fell out pretty shortly after and it felt much softer.  Just wanting some bristles to start growing now as hopefully it will be proper hairs rather than soft fuzz Smiley Happy  For some women hair starts growing before chemo ends.  I've not noticed very much yet and I'm on chemo 6 (final round) on Weds.  Oh well hopefully it may start sprouting lots after I finish chemo!! 

Member

Re: April 2019 Chemo Starters πŸ’–

I never had nausea on FEC. Did you get sufficient anti sickness meds. Mention it at your next appt ahead of your next session and they might be able to prescribe a stronger and more effective anti sickness med. 

what a shame, I hope you feel better soon. Xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi All

 

looking for some feedback from you people who have had FEC. I had my first dose on Wednesday afternoon. Wednesday night sick twice, felt sick all day Thursday & Friday. Zero energy, bed bound apart from attending an OOH GP appointment on Saturday as got oral thrush, puffy watery swollen eyes so antibiotic  eye drops & chocolate movicol 🀒 for the dreaded constipation. It’s now Sunday & I still feel terrible, I can’t drink coffee, don’t fancy food but am trying to eat fruit & plenty of cold water.  Is this quite normal for FEC? And does it get easier, I have 3 more doses. I’ve already  had 12 weekly doses of carbo/Paclitaxel. X

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all

The swelling in my hand has gone down today.  I checked my temp yesterday (and today) and it was fine and i noticed my right wrist was a bit swollen so i think it was down to the docataxel and not the clot. Ive had a little tingling in my fingers but it doesnt last long.

 

Has anyone else had nausea on the docataxel? Ive had it literally since day 1 of chemo so its been 11 weeks now and ive tried 3 different tablets and so many different things such as ginger tea, ginger biscuits, fizzy drinks but nothing seems to shift it.

 

I hope u have all managed to sit outside and enjoy the sun this weekend.

Take care

Sue xxx

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Re: April 2019 Chemo Starters πŸ’–

Hi Lynsey

OMG Would be way too scared to do that - you should see the state of my legs after I've used a bic πŸ˜‚

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Re: April 2019 Chemo Starters πŸ’–

Louise, you could use a BIC razor and get someone to shave it completely. I’ve heard others saying they do that. I just haven’t as it doesn’t bother me too much. Xx

Member

Re: April 2019 Chemo Starters πŸ’–

Thanks Lynsey

I was quite shocked and disappointed.  Thought I would have a nice smooth shiny head like my bald male friends πŸ˜‚  Well if thats how it goes then I guess thats that - hopefully I will get used to it very soon.

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Louise, yes mine also felt like that. You will get used to it and your hair will soften up a bit and become like a fuzzy down. I have a soft fuzz now. Mine fell out after first treatment so I’m definitely getting used to it. I do find it weird at night but you could always wear a lightweight cap. I used a woolly hat at the beginning as my head was cold at night but for this time of year, a wee Cotten cap might be better. 

Lynsey xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hair Shave Advice Please

 

Went to hairdressers yesterday - the place where I got my wig.  As there was hardly any hair left - very very short, lots of bald patches, but still soft - I asked to have it shaved.

 

The result wasnt what I was expecting.  I thought it would be very smooth, no hair, nothing to feel.

 

However although you can't  see any hair, you can certainly feel it.  It feels like a hedgehog.  It is driving me mad.  I can even feel it through my headscarf when I touch my head.  When I lay down to sleep I can feel them digging into my head.

 

Is this normal?  Is this what it feels like after having it shaved.  I really wish I hadnt had it done now.

 

Louise 

 
 
 
 
 
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Re: April 2019 Chemo Starters πŸ’–

Thank you Phet7178 for your kind words and I'm so sorry about the loss of your dad too. It was hard enough having to tell my elderly dad about my bc, but having to tell your mum so soon after losing your dad is awful. Thinking of you all xx

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Re: April 2019 Chemo Starters πŸ’–

Hi Bramley

Thanks for your thoughts on these aronia berries

Louise x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Everyone

 

Catching up on our thread.

 

Sue - I had pretty dramatic hand swelling after the first dose of Docetaxel (round 4 chemo).  Both hands literally doubled in size, painful burning sensation and I couldn't bend any fingers so lost the use of my hands for a week Smiley Sad   I'm pretty sure mine was due to not being prescribed steroids for long enough post chemo 4.  My prescription for steroids was not changed from the 3 x previous FEC cycles i.e. finished my course 3 days post chemo.  On day 4 my hands started to react.  On chemo round 5 I was given a longer course of steroids and took for 5 days post chemo and I haven't had the same swelling in either hand although I'm still peeling skin on both hands as I did on after round 4.  Yours sounds completely differrent i.e. only on 1 hand and on the same arm your picc line and blood clot. Would definitely be worth getting checked out.  Hopefully they will sort it out for you.  Keep an eye on your temps as I developed a temp of 38.5 when my hands were swollen.  Good luck xx

 

Phet - lovely to hear from you again with an update on how you are doing.  My heart goes out to you for losing your Dad as such a young age last year.  Cancer is such a cruel disease that affects so many lovely people.  Glad to hear your side effects post chemo 5 on Docetaxel were less this time.  Hopefully that will be same on chemo 6.  I'm counting on it for me as I have surgery 3 weeks after which is quite a tight timeframe to recover before a general anaesthetic.  Glad to hear your lump seems to be shrinking even more.  It's so lovely to hear from others that the chemo drugs are doing what they are supposed to be doing; it makes all the rubbish side effects feel worthwhile somehow.  Really interesting to hear about the fat necrosis as I can also feel something small but quite hard. I hope mine is the same as yours!  Thank you for sharing xx

 

Louise - I've never heard of aronia berries so I had to look them up Smiley Happy  If it were me I would take the advice of your BCN whilst going through chemo.  The chemo drugs are pretty powerful and do a very good job in the vast majority of cases.  I just wouldn't want to do anything that could in theory affect the potency of the drugs.  In terms of boosting your immunity, the daily injections of Filgrastim for the 5 days post chemo are really effective to help to protect you if you are taking them?  I know that from personal experience.  I had to go into hospital to be assessed due to hand swelling incident (above) and temps a week post chemo (2 days after I had finished the Filgrastim injections).  Blood results showed my neutrophils measured 7 (my level before starting chemo was high 5).  A result of 7 is higher than the average healthy person, let alone someone a week post chemo!  The doctor explained that the injections would have boosted the neutrophils but that was good in order to provide immunity and protect me.  Apart from the injections which are amazing, there is a growing area of research about the importance of healthy gut bacteria to support the immune system.  The advice is to eat a rainbow of colours in terms of fruit and veg (full of antioxidants) which will increase the good gut bacteria.  I'm eating around 8-10 portions a day (combined fruit and veg and including other berries) to try and support my immune system through chemo.  So far I've been mostly well with no infections despite my husband and son having awful chesty colds in the 2 weeks after chemo 4.  Hope that helps?

 

I'm being brave and sitting out under the awning in our back garden with nothing on my bald head.  Maybe the fresh air, sitting in the shade, will help to grow some new hair Smiley Happy  Take care everyone and enjoy this fabulous weather xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi RunningSue

 

On Docetaxol I've had hand swelling on both sides, so I've had to remove my rings. 

 

However it f it is just on the side of the PICC line, it is really important to check it out, give your emergency line a ring this morning.

 

Let you s know how you got on xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hello ladies

Has anyone else had swollen hands on the docataxel?  My left hand and wrist is swollen this morning.  Its the same arm i had my blood clot in from my PICC line.  Im still on injections to dissolve the clot so i doubt its from that.  Just wondered if anyone else had this on docataxel?

Sue xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Aronia Berries or Juice

 

Hi a friend recommended aronia berries or aronia juice to help with my immune system during chemo.

 

Just wondered if any one else eats / drinks them.

 

I asked my BC nurse and she said not to have them, but she says that to everything I ask about.  

 

I read people on here using this or that and when I ask my BCN if I could try the things I've seen others write about she always says no.

 

So, would love to hear if any one uses aronia - many thanks

Louise

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all, 

 

Sorry I've been absent - I've been getting over the latest Docetaxel (no. 5!) The side effects for me were a bit less this time, though I'm definitely feeling the cumulative fatigue. Days 5 and 6 were rubbish, I felt shaky in the legs every time I tried to stand up and had to keep taking painkillers for headache, sore throat and joint aches. But apart from tiredness I'm basically fine now. If I do too much in the day I tire myself out so just taking baby steps. 

 

Jencat and Bramley - I'm so sorry to hear about your Dads. My heart goes out to you dealing with this and cancer. My Dad died last September of melanoma - though he'd had it for a while his treatment stopped working very suddenly and he went downhill in a few weeks. He was only 62 (I'm 35) and our family is still not sure how we'll recover. Telling my mum I had breast cancer in March, so soon after Dad's death, was probably the hardest thing I've ever done. One thing I'm glad of is that I didn't find the lump last year before he died - he would not have been able to cope with the news while so sick. 

 

I'm pleased to hear about everyone's shrinkage too! My lump has continued to shrink on this round and now has become completely squishy. The one annoying thing is I've found a little, hard pea sized lump next to where the old lump used to be (original lump was 4.2 cms, now more like 1). My oncologist tells me the hard pea sized lump is probably fat necrosis - essentially scarring from the chemo, which she says is common. I hope so! Assuming it is, I've gone from feeling very depressed about no shrinkage on the EC, to very happy with the Docetaxel. Even thinking of asking my oncologist for an extra cycle if the little b***** hasn't been finished off after cycle 6!

 

Hope every is enjoying the weather; I just had a walk along the canal near my house in Oxford and it was gorgeous

 

P

xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Debi

 

That is such good news and a huge relief for you.  And breathe Smiley Happy  Those pains in your lump were obviously good pains.  It will probably shrink some more too after the remaining rounds of chemo.  Will be teeny tiny by the time you have your lumpectomy in September.  Good luck for your chemo on Tuesday and hopefully the side effects from Docetaxel will be less this time.

 

I've got a busy week of appointments next week.  Pre chemo blood tests on Monday, pre operation assessment and Oncologist on Tuesday, chemo 6 (and final one, yay!!!) on Wednesday and mammogram on Thursday to get up to date picture of tumour. Not sure why I'm not having an MRI before surgery as they seem to be a lot more accurate than mammograms but I guess the tumour could shrink right up to the day of surgery anyway.  Still haven't made up my mind if I want to ring the bell at final chemo on Weds.  Part of me wants to in order to celebrate the end of chemo but for me chemo was only the start of treatment, I still have surgery and radiotherapy to go so I'm only around half way through treatment.  

 

This weather is glorious.  Enjoy the sunshine ladies and stay strong xxx