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April 2019 Chemo Starters πŸ’–

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

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

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

Member

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

Member

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 

Member

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

Member

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˜‚

Member

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

Member

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 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Debi

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.

Sue xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

Back from consultant app. lump is now 1cm πŸ‘.  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.

Stay strong.

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

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

Member

Re: April 2019 Chemo Starters πŸ’–

|Hi All

 

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:

 

https://forum.breastcancercare.org.uk/t5/Genes-and-breast-cancer/bd-p/Genesbreastcancer

 

Wanted to flag it up in case it may help anyone else is in a similar position considering gene testing.

 

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Evening All

 

What a gorgeous sunny day to help lift our moods Smiley Happy  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 Smiley Happy

 

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

Member

Re: April 2019 Chemo Starters πŸ’–

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

Member

Re: April 2019 Chemo Starters πŸ’–

Thank you Sue Smiley Happy 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

Member

Re: April 2019 Chemo Starters πŸ’–

Sorry LynsH, I misspelt your name, I should have had my glasses on! Smiley Happy x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone,

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

Member

Re: April 2019 Chemo Starters πŸ’–

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 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Bramley,

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! Smiley Happy xxx

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

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

Member

Re: April 2019 Chemo Starters πŸ’–

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!

 

Pollensa x

Member

Re: April 2019 Chemo Starters πŸ’–

Hello Jencat

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. 

Sue xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone 

 

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. 

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

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. πŸ’— thanks again. 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Jencat

 

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 Smiley Happy   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

Member

Re: April 2019 Chemo Starters πŸ’–

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 Smiley Sad

Member

Re: April 2019 Chemo Starters πŸ’–

Sue, πŸ˜‚ 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. 

Lynsey 

Member

Re: April 2019 Chemo Starters πŸ’–

Evening ladies

 

Just catching up on the thread.  So sorry so many of you are feeling so poorly with side effects on Docetaxel. Smiley Sad  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 Smiley Happy

 

Sending positive thoughts to you all.  Stay strong ladies, we are getting there xxx  . 

Member

Re: April 2019 Chemo Starters πŸ’–

Hello lynsey

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 

Take care

Sue xxx