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 😞 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 🙂 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 🙂 Take care everyone and enjoy this fabulous weather xx
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
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?
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
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
That is such good news and a huge relief for you. And breathe 🙂 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
That is fantastic news!! So pleased to hear your lump has shrunk - i bet that is a huge relief for you and i think that means a glass of wine to celebrate? Good luck with.your treatment on tuesday - u are over halfway now. Will you have your op after your chemo? Glad it is all going well for you.
Back from consultant app. lump is now 1cm 👏. Next treatment on Tuesday number 5 of 7. Just wanted to pop on and tell you.
Hope you are all coping with side effects and having the best day you can.
I'm so sorry to hear about your dad as well Bramley x My dad was 5 weeks from diagnosis to death too, which I know for my dad, was how he'd want it, but for us it was such a shock. He was still active and living by himself until he had a fall and taken into hospital and that was when the cancer was discovered-lung and bones.
My hair was thick before chemo, but I'm pleased it's still that way! It doesn't seem possible that this time last year I hardly had any and was wearing a wig.
I'm surprised that you weren't eligible for the gene testing as your mum had bc (glad she's doing so well) and I think you said other relatives had died of cancer. I was able to be tested on the NHS, but perhaps it was because I'm TN. Fortunately it came back negative-I was worried as I have 2 daughters xxx
Just to let you know that I've recently paid for private gene testing for the BRCA1 and BRCA2 hereditary genes associated with breast cancer. I didn't qualify for gene testing on the NHS but my Mum also had breast cancer 12 years ago at age 63. Thankfully she hasn't looked back since, is now 75 and living a healthy and full life.
I've put more info about my experience of paying for private gene testing on the Genes and Breast Cancer forum (through the home page) of this website as I thought it would be more appropriate there:
Wanted to flag it up in case it may help anyone else is in a similar position considering gene testing.
What a gorgeous sunny day to help lift our moods 🙂 Makes such a difference and hopefully it will continue over the weekend.
Jencat - so sorry to hear about your dad and giving up your job. I lost my own Dad to pancreatic cancer 2 years ago in the most shocking way (5 weeks from diagnosis to death) and I miss him desperately. Nice to hear your hair has come back really well and thick. I am so looking forward to that but think it could take quite a while at the rate it's going! Just as well I like my wig 🙂
Christine - congratuations on finishing the weekly chemo and hope your blood transfusion goes
well tomorrow. Onwards and upwards to the FEC cycles now and getting to the end of chemo.
Debi - I've been thinking of you this week with your MRI and hopefully positive results tomorrow xx
Hoping everyone else is doing ok xxx
Christine18, I hope you manage to get some sleep, it's not helped either as it's so warm at night at the moment and hope your blood transfusion goes ok tomorrow. When you have FEC, you might find it worth trying travel sickness bands-I wore them whilst I had chemo and for a few days afterwards and I wasn't sick at all.
Thank you for your kind words x Dad was 91, but very active and I miss him terribly, but grateful that he saw me finish treatment. It's strange not going to work. I worked in a school, so I'll probably still do some volunteering work there after the Summer holidays xx
Thank you Sue It's no trouble, I was glad of other's helping me when I was having chemo. I didn't realise that I would find Docataxel so tough, so it was a relief to find that chemo's 5 and 6 were a lot easier to cope with xxx
I had my last weekly chemo session (paclitaxel) today!! One more milestone! FEC to be started in two weeks.
My haemoglobin has been slowly dropping throughout the whole regime though so they’ve said I need a blood transfusion. I have to have 2 units of blood tomorrow. It’s going to be a struggle as I only had Chemo today and the steroids aren’t letting me sleep!
Has anyone else had a blood transfusion or been warned with one? Thankfully this week my white cell count is back up so no longer neutropenic.
Its so so nice to hear success stories from previous groups. I’m so sorry to hear about your dad though and giving up work. You sound so strong though and it’s inspiring so thank you! X
Thank you Lynne, it was no trouble and I'm happy to help if I can. It's good that the end of treatment is in sight and I hope you will feel much better with your next chemo xxx
Thank you so much for your lovely message, that's so kind. It's no trouble at all coming on here, I know how glad I was of the forum myself when I was having chemo.
My life had started to return to some normality and I returned to work last September. Unfortunately my Dad was taken ill in February and died in March and that has affected me and I've now decided to retire from work. On a positive note, Dad knew that I was moving forward after the treatment and he could see that I was looking well.
My hair has grown back really thick and the 'chemo curl' is beginning to go! A friend I saw this evening who I hadn't seen for a while, thought it was still my wig! xxx
Pollensa - hope your Nurse Practitioner appointment tomorrow is helpful and she can put your mind at rest with a plan for the next round of chemo. Sorry to hear you are still feeling so poorly. Hope you turn the corner tomorrow x
Liz - glad you have had a positive experience with your new Oncologist and have a plan for round 5 with Docetaxel. Hopefully the reduction in the dose of Docetaxel will help. When people comment on how I'm looking so well, I just thank them but also say something like "thank you that's really kind. Today is a pretty good day and I'm feeling really well but unfortunately every day isn't like that on chemo. On some days I feel pretty poorly as its a pretty long and gruelling treatment to go through". I just like them to be aware that I'm not always feeling well or going to be the usual cheerful, smiley person they know and expect to see. Not sure if that helps?
Take care xx
I'm seeing the nurse practitioner tomorrow and going to ask about next cycle of docataxel. Because of new drugs I might'nt have the same pain but this is my third day in bed and I still feel dreadful. Not even sure if I'll manage to hospital!
And on another topic ... What do you say when you're told "you're looking very well" , "you look great, you'll be fine!" Or the worst "you wouldnt think there was anything wrong with you"
I know I should just grit my teeth and say thank you but when you're feeling like death warmed over it's not always easy!
And to lower the tone completely......these Laxido sachets work a treat!
I would also like to say thank you for popping over and reassuring us about docataxel. Its so daunting going into each cycle wondering how long we will feel these side effects for. Its nice to hear that you have completed your treatment and i hope u have made a full recovery.
Met new oncologist yesterday, such a different experience - very positive
They are reducing my docetaxol dose by 40% due to the level of side effects I've had. If I get a similar level on cycle 5 ,then they will stop the chemo at that point.
If I get less less side effects that are manageable then they'll keep the lower dose for cycle 6.
So ill just wait and see what Friday brings.
Hope you are all starting to recover OK.
Thank you for popping over from October’s board. I can’t tell you how reassuring this is to hear. I really am hoping I’ll be better with the next 2. The end is in sight!
I hope you are keeping well following treatment. So nice to hear others experiences post treatment and the amazing progress they’ve made. 💗 thanks again.
Thank you so much for popping onto our thread with some reassurance ref Docetaxel. I thought I was going mad to be feeling so well after round 5. It's the best I've felt since starting chemo but I started worrying they had given me the wrong drug or a half dose! I'm a pretty positive and proactive person and I know I'm doing everything possible to keep myself fit, active and well during chemo but this time I was thinking it was just too good to be true 🙂 Hoping the taste bud thing will improve a few weeks after chemo round 6 next week. I also hope that it will be a similar positive experience for some of the ladies currently struggling with the Docetaxel side effects after round 4.
I hope you are doing well after your treatment in October in 2017 and your life has returned to some sort of normality? It's reassuring to read the threads of those on the months and years before us moving on with their lives after treatment. It is a horrible disease that affects so many. It also takes strength to share the experience of this journey with others by posting on this forum, so thank you for taking the time to reply xxx
Morning Bramley and Sue,
I'm from the Oct'17 group. Just wanted to say/reassure you that I found the first session of T the worst, maybe your body has to take time to adjust to a different drug? Chemo 5 and 6 were definitely easier. Sorry to hear about your lack of taste buds, it's horrible when you can barely taste anything x
Sue, 😂 yeah everyday there is something different!! I think if you didn’t laugh you would cry!!
I actually pushed myself to go a walk today and it boosted my energy. Came back and cut the back grass. Felt like I’d achieved something even if it was something small. Baby steps I guess!
Hope everyone picks up as the week goes on.
Just catching up on the thread. So sorry so many of you are feeling so poorly with side effects on Docetaxel. 😞 Each day is one step closer to the end of chemo and just imagine what it is doing to the cancer cells with any luck! I'm just wondering if I had the right drug this time as I cannot explain why I have been much better after round 5 than round 4. But then my taste buds are just as bad as round 4 so I definitely know it's Docetaxel! I haven't had any joint/muscle aches or flu type symptoms this time and I'm nearing the end of the 2nd week post chemo so I'm hoping I'm in safe territory. It will be interesting to hear if any of you feel less side effects with Docetaxel after round 5 than round 4.
Kelly - sorry to hear that your treatment is being delayed. I hope that you will be able to get back on track once they are happy with your heart.
I'm doing fine. Just trying to keep well and do the right things so that I can have my last chemo as scheduled on 3rd July. I have my Son's University graduation to attend on 14th July (2 weeks post chemo 6) and I just have to be there. It was my focus and goal right at the outset of chemo to try to get through all 6 chemo rounds on time so that I could be there. I can finally see the light at the end of the tunnel.
I think I have lost most of my eye lashes now and by the evenings my eyes feel quite gritty and vision gets blurry. Amazing how you take your eyelashes for granted! I bought a pair of false eye lashes (Eyelure ones from Asda) but I tried them on today and decided I looked like a drag queen! they are just too much on me so just going to have to wait for my own to return. Nothing exciting happening on the hair front so far unfortunately after chemo 5. I think I have 4 new dark hairs sprouting on the top of my head amongst the very fine white fuzz but have to look very closely to see them. I think it's going to be a long journey to get any real hair growth. I'm still washing and conditioning my scalp every day though in the hope it will increase blood flow to the scalp and stimulate some growth. Scalp feels lovely and still blemish free 🙂
Sending positive thoughts to you all. Stay strong ladies, we are getting there xxx .
Yes ive only had one docataxel so far and ive got another 2 to go. I dont remember feeling this "drained" after the EC!! I totally agree that you get so many different side effects - i tell my family that "todays specials are" and tell them what i have today - it just brings a little bit of humour to what is a totally awful situation
i might ask about that too! The pain in joints is just horrendous. Although couldn’t work out if it was the docetaxel or fibgrastim jags as both have very similar side effects.
My whole mouth feels bad, gums swollen and sore and no taste. I started using difflam today (I noticed a few of you had commented that this was helpful). Feels slightly better pain wise but still no taste. Eating cause I need to but definitely no enjoyment. I wonder how long after the docetaxel ends will our taste buds reappear?!
Still feeling dreadful thanks to docataxel , sore limbs, very fluey and no energy. However, phoned the unit today and they have given me gabapentin, which apparently helps with pain. I've started it today for 7 days and then if I take it for the next round I might'nt be so sore.
I really don't want to go through this again. They tell you docataxel is harsh but I bet few of us realised just how wicked it Is!
I have had one session of docetaxol (no.4) and suffered with aching bones, neck ache and taste buds defunct. I also have Herceptin and Pertuzumab because i am HER2 positive. I had a heart scan before my No. 4 treatment which showed normal function, the consultant said i wouldn't have another for about 4 month! how will they know if the treatment is affecting my heart? I think i may need to ask my consultant on Friday because i am due to have my next session ( no.5) on Tuesday.
Sue, I might ask at my next appt. although like you, probably best for the 3 weeks infusions rather than weekly but if it’s a bit easier to handle I would prefer that. Just feel blooming awful on this. Get over one thing and another side effect starts! Kids stop from school on Thursday this week so really hoping I’ll feel better when they’re off. No hiding in my bed while they’re at school!
How many have you still to go? Was number 4 your ‘ loading dose’ and did you need to do the daily injections of filgrastim?
thank you for your reply. I’ll also be having it weekly, for 12 sessions. Glad to hear you’re still able to do normal nice things...fingers crossed, I will too.
Its good to see that they are doing clinical trials, to address the heart issues, hopefully they’ll be able to prevent it happening to patients in the very near future. x
I was chatting to a friend today who started on docataxel and had the same side effects as we are and she got changed to paclitaxel as its a bit thinner and not as toxic. She has had mild pain and heartburn on the paclitaxel but none of the nausea and hot sweats ive had. My oncologist said she may change me depending on how i react and im meeting her next week so we will discuss it there. I prefer to be on the 3 weekly dose rather than weekly but if it gets rid of these side effects then im happy to change.
it must just be the way the docetaxel works in that case. Just desperate the get the last 2 done with and feel human again. It’s the first time I have really struggled to manage for myself during the whole treatment process and feel awful needing to rely on other people.
I hope you all feel better soon. I just can’t wait to taste food again!! I normally love eating and food and actually dreading it now as it gives no flavour. Hoping this will improve very soon.
Im sorry to hear you are having problems with your heart. It’s such a catch22 between your cardiologist and oncologist but you’ve got to trust their judgement. I’m on two clinical trials, one of which is with cardiology to try and prevent issues with chemotherapy. I know it won’t help you too much but it’s nice to know they see it as a problem and are doing research to try and prevent future cases.
I have been on paclitaxel and had 11 weekly sessions. One more to go tomorrow and then I’m on to FEC (after a little Chemo holiday so I can be a bridesmaid!). I have found the paclitaxel absolutely fine. A lot more tired but no nausea at all. I get neck ache plus some headaches and that’s about it. I’ve been on hen dos, golfing, walking, beer garden etc. I haven’t been able to work and I have had my bad days but I think that is related to the carboplatin I have every three weeks not the paclitaxel. Of course everyone is different but I hope you experience the same as I have. Also, I have my MRI on Friday but from external measurements my tumour has shrunk from roughly 3cm to less than a cm so it does the trick too.
I really hope you get everything sorted and back on track. Wishing you well x
hope your treatments are going as well as can be.
Well I’m still on a slight break from chemo, due to heart issues. It appears the chemo has weakened it. I’m on medication to try to strengthen my heart.
I was meant to be going into Docetaxel every 3 weeks, but if all ok with my heart CT, I’ll be starting Paclitaxel. Is anyone else on that treatment please?
my Cardiologist said going on heart medication and discontinuing with chemo, should strengthen my heart, but obviously my Oncologist said I need to get back on chemo, to stop cancer coming back, as it was in my nodes x
Yes im the same. I had 3 EC and i had my first docetaxel a week ago and ive got zero energy. I picked up after about a week on each EC but im so tired since starting docataxel. Going to try and meet my friend for lunch just to get out of the house for an hour or so. I did wonder if anyone has tried energy bars and if they helped at all?
Hi ladies, first time posting in here.
Like a a lot of you I’ve had my first docetaxel and struggling with side effects still. I was fine on EC, (a few days of feeling rubbish then back to normality) but with docetaxel I have been floored. I’m on day 11 and now loaded with a cold, still getting pains in joints and generally just no energy. On EC, I managed to get out running and walking but not with this round.
Just very frustrated with it. Are most of you the same on this type of chemo?
Wow that is a big difference in size, the FEC should blast some more of it away. My taste was better when i was on EC than it is on Docetaxol, just felt a bit nauseous.
Best of luck with your FEC sessions, i am sure you will cope with the SE.
18 days on from first docetaxol and cetaxol and I still feel dreadful. Apart from the odd visit to the supermarket, I've done absolutely nothing.
Chest infection cleared thankfully.
Hopefully the new oncologist might be able to offer something useful tomorrow.
Got some company now during the day, daughter finally talked us into a kitten, very timid but starting to play a bit, which is lovely to see as he's had no socialisation at all.
I am a week in since my first docataxel. I had awful constipation on saturday and slept most of the day as i was extremely tired. Ive been getting hot sweats for a few days now - not helped by the fact its so glorious outside!! Ive bought a small fan today i can put in my bag and my brother has given me his fan for night time so fingers crossed for a better sleep tonight!! Currently got stomach cramps so ive been taking ibuprofen today which has taken the edge off it. Hoping these side effects disappear in a day or two
Take care ladies - keep fighting
my lump was 2.4cm so the shrinkage was great news to hear. I’ve been told the FEC is like the Tasmanian devil of chemo & that’s given to go at it like a whirlwind. I’ll take your advice & im going to drink loads & I’ll definitely be taking the anti sickness.
my taste on the taxel has been horrid, nothing tastes right, in between my teeth felt like it hurt & ive even suffered with oral thrush which was horrible. Do you not get a horrible tasting mouth on FEC?
Thanks for your reply. From tomorrow then I will be drinking plenty of fluids. Anything to make these last 4 cycles as easy as possible. I’ll let you all know how I get on x
Couldn't agree more about docataxel, it's absolutely dreadful. FEC was so much easier. Every bone in my body is sore and stiff. Just started difflam, certainly soothes throat.
I know these se's won't last and my oncologist did say if the first cycle of docataxel was really bad they would space it out a bit more. So that option is there but I just want everything finished!
Anyway, sister is looking after me today and I'm going to take it very easy and hope tomorrow is a wee bit better.
Love to you all
I found drinking lots on day before FEC and fews days after helped a lot.
I was a bit more tired the two days after but did get back to normal quickly and was very active walking and cycling.
I was lucky and didn't get the nausea, felt a bit 'not quite right' for a couple of days but nothing to stop normal life
Would happily have more FEC instead of the Docetaxol!
Good luck with it all
Congratulations NikNak5 on your shrinkage, how big was your first measurment? I didn't have FEC but had EC which i think is the same just minus the 'F' part. One bit of advice i found good was to keep drinking plenty and to take anti sickness tablets. I just felt very lethargic and ligthheaded on EC.
I am now on Docetaxel and taste buds have gone, i find the only drink i can taste is Ribena dilute. Lips are quite dry too.
ive just finished 12 weeks of carboplatin/Paclitaxel & will be starting 4 cycles of FEC every 3 weeks on Wednesday this week coming. I’m scared of the FEC. Anyone else started FEC & have any side effects or stories to share. On a positive when I met with my oncologist after my last ultrasound & mammogram my lump has shrunk by over half & is now 1.1 cm which I’m over the moon about. Look forward to hearing from you ladies. We are all doing so well 😊
Wrlcone to the club, my mouth still isn't right and tadte hadn't returned (day 17)
Found barley water tolerable