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January 2019 chemo starters

537 REPLIES 537
Member

Re: January 2019 chemo starters

Hi LB2, 

Thank you for your advice when I posted in March. Couldn’t see my post so haven’t been on here until Saturday The painkillers did help but oncologist reduced my last two taxol treatments as I was having problems with the nerves in my fingers. My last chemo was the 17th of April, had a break & have now started radiotherapy. My first session went ok, they spent a long time setting me up but the actual treatment took minutes. Hope everyone on here is doing well xx

Member

Re: January 2019 chemo starters

Come over and join us Kip! Your contributions are great.  All welcome❤️ here.  It was just easier to post in December because there was more stuff going on....

Sunnydaze

xx

Kip Community Champion
Community Champion

Re: January 2019 chemo starters

Thanks Ditkat,  that's good then .. Was getting worried 

 

Member

Re: January 2019 chemo starters

Hi Kip

I think most of the January ladies are now posting on the December thread...we have merged and become one xx

Kip Community Champion
Community Champion

Re: January 2019 chemo starters

Hi Jan ladies,  very quiet on here .  Hopefully you are all just getting on and ploughing through the cycles ..

Kip

Kip Community Champion
Community Champion

Re: January 2019 chemo starters

Hi January Ladies... you are all doing sooooooo welll... wanted to say...

Whoop Whoop to tumour shrinkage....

BOOOOO to thrush....yuck yuck yuck...

hang in there...wonderful warrior ladies!

Kip

x

Member

Re: January 2019 chemo starters

Hi LB

Great news re; tumour shrinkage! I am sorry about the thrush. This has happened to me too, but The Fluconazole clears it up. 

Sunnydaze xx

Member

Re: January 2019 chemo starters

Hi LB

Sorry the antibiotics have given you thrush but great news about the shrinkage. Yay, onwards and upwards xx

LB
Member

Re: January 2019 chemo starters

Hi all 

I saw the oncologist today and she’s happy with how it’s all going - original lump no longer to be felt and the previous scans showed lots of shrinkage 😀 yay ! Sadly due to previous antibiotics now got thrush at both ends 🥴 but at least that’s not due to the treatment - so get this sorted and get on with getting better 🤞🤞🤞🤞 hopefully have a couple of weeks with no appointments 🤞🤞 

hugs to all - we gonna do this with the help of our wonderful doctors 🤗🤗🤗🤗

LB
Member

Re: January 2019 chemo starters

Hi the doctor gave me some antibiotics and canestan cream to sooth it 🤗 xx🤞

Member

Re: January 2019 chemo starters

Excellent. Hopefully it’s nothing but always best to get these things checked 🤗 xx

LB
Member

Re: January 2019 chemo starters

Just rang and going to see GP tomorrow with water sample 🤗

LB
Member

Re: January 2019 chemo starters

Thankyou I will look into that 🤗 x

Member

Re: January 2019 chemo starters

Hi LB

I have had 2 lots of T now and not experienced nausea or burning. I do recall seeing posts from Shi saying if you suffer with burning urine even without a temp, it’s important to get it checked out as can still be uti without a temperature. Do you have a weekend GP unit nearby or maybe a pharmacy that could dip your urine to test it? Otherwise might be worth calling your unit again to see if they can test it. I bought some of the test sticks from amazon so I could keep an eye on things myself just in case of any stinging. Hope you get sorted. Take care 

LB
Member

Re: January 2019 chemo starters

Hi all I had my first T Docetaxel on Tuesday and have been feeling a bit nauseous for several days but the worst thing is that when I wee it burns horribly - I rang my acute oncology team and was advised to drink lots of water and watch out for rise in temperature. Has anyone else experienced this on Docetaxel? If so what have you used? 

Hugs to all 🤗

Member

Re: January 2019 chemo starters

Hi everyone, just thought I would share this. I was in boots today and they said no 7 have been working with Macmillan , they currently doing raffles for breast cancer. The assistant I spoke to said to just book yourself in for a free make over wth the no 7 counter , may interest some of you . Lots love x

Member

Re: January 2019 chemo starters

Just popped over from the December thread. My 4th chemo (1st docetaxol) was definitely the worst. It was the worst because I didn't know what to expect and because it just felt like chemo was never-ending! I was actually fine days 1-2, then days 3-7 I was very achey - not all over at once like with flu, but if it wasn't my hips, it was my knees, or ankles, or feet (feet?! yes, honestly!). I spent most of those days in bed with lots of painkillers feeling sorry for myself. I also had reduced brain (but not as bad as FEC). Oh, and everything tasted slightly odd. Once the aching stopped I started feeling better.

My next docetaxol was much less achey, just a couple of days, and much easier to deal with because the thought of 'the next one is the last one' helped!

My next (and last!) chemo is on Thursday. Good luck to all of you, get the painkillers in early! It's fine to take paracetamol or cocodamol as long as you check your temp before taking it.

B74
Member

Re: January 2019 chemo starters

I had my first Taxol today and like you G, I was really, really worried about starting a new drug. My anxiety was not helped by 2 failed (& painful) attempts to insert a cannula before they succeeded - they are now talking about a PICC line or port. I used to have ‘great’ veins but they’ve been destroyed by chemo. Then when the Taxol started I had an immediate allergic reaction (felt I couldn’t breathe etc) so had to stop, get more drugs & wait a while before trying again. All up it took 4.5 hours. I’m feeling a bit daunted about having to go back another 11 times (followed by radiation).

I don’t think I mentioned that 3 weeks ago we got a 10 week old puppy! What an insane idea - I really had no idea how much work he’d be!! Yes he’s cute - but I think at the moment I’d rather have my days free for naps etc. 💤

G
Member

Re: January 2019 chemo starters

Hi wonderful people, I too have been extremely quiet.  Just like you LB, I have had to stay away despite such wonderful ladies on here.  I just found I was getting sucked down the rabbit tunnel of my own accord and googling away etc which wasn’t doing me any good and needed some time away, I have been playing catch-up the last couple of days and reading how you are all getting on, everyone’s story is so unique despite us all following a few very similar medical paths, that’s what makes us all so very special in what we are going through, big hugs to you all.  

 

I start my first of 4x Taxotere tomorrow, very scared as the thought of entering the unknown again is really playing on my mind.  2:30am last night I had to finally get up and watch recordings I was saving up for next week as I couldn’t get back to sleep, I ended up cleaning before 6am, in fact this week I have gone into the nesting phase I had before the first chemo! On the positive side all this means 4xEC done though thank god.  I have felt so sick on this treatment, they had to lower my last two doses due to this and also on the third one my liver result was a bit too low.  Just keep telling myself I am officially half way through and just to continue to try and manage the emotional and less obvious to others visible physical symptoms like tiredness, brain fog, hot flushes, sensitive teeth (anyone else?!?) etc and to ignore, or at least quieten, the more obvious ones as they are out of my control really, lack of hair (despite cold capping), the thinning brows and lashes (will get worse on tax I hear), the weight gain (despite, in the two better weeks of the 3, still running 5ks a few times a week as well as 1x kettles 1x Pilates class). Well there was a little moan, sorry!!!!

 

Good luck to everyone about to have some more treatment/just had treatment recently, I hope it is being kind to you and if not, I hope you are being kind to you 💝, G x 

Member

Re: January 2019 chemo starters

Picc line was fine honestly . I was anxouis re insertion but was OK a little uncomfortable but probably more down to my anxiety. I took  paracetamol for 1 day only. It takes away all the worry of trying to get a cannula in. If you do go down that route the picc line covers for a shower are brilliant. Good luck x

LB
Member

Re: January 2019 chemo starters

Hi all

 

@welsh j

thankyou for that info about weekly paclitaxol. My oncologist suggested I go onto that next instead of T but as I have just come out of a 4 day stay on obs ward- turned out to be lower respiratory tract infection. My T starts next Tuesday so we’re going to try that first and if bad se’s we’ll go onto weekly. Having just spent 4days and nights trying to accommodate a cannula for intravenous anti biotics I really am worried about having to have a Picc. Had to have a lung scan as they thought I had a blood clot on the lungs but happily that was clear. All in all a dreadful worrying week. 

We can do this 🤗🤗

Member

Re: January 2019 chemo starters

Hi girls, I have just completed 12 weeks of paclitaxel via picc line so thought I would update you. Generally ok had couple of days a week when more tired, some nausea but to honest only during the first couple of weeks . I religiously creamed on nails with 8 hour cream and was fortunate didn't have any nail problems, I was also lucky not to have any neuropathy symptoms also. Had odd days of diarrhoea and extreme constipation and found prune juice really helpful. Did have some low tearful times but hec were not super human. I have put weight on approx 8lb which really upset me but you can't fight everything . I also cold capped throughout and still have my hair , it was gruelling and put a lot of extra time on treatment. How can you loose the hair on your lady garden but have hair on your toes , I must be a hobbit . I haven't missed not having to pluck my chin or eyebrows, I have lost a few lower lashes on eyes. Really hope b74 yours goes as well. Picc line has been ok just meant every Monday hospital visit for line care and bloods then chemo on a Tuesday. I still have to have herceptin every 3 weeks but they talking about taking the picc line to reduce the risk of infection. Radiotherapy starts soon , will this journey ever end !! Saw oncologist today and to start on hormones in next 2 weeks , what delights will that bring. Sending lots of love to you all , wherever you are on your journey, we will all get there in the end . Xxx

Member

Re: January 2019 chemo starters

Glad to see you back on line B74. Sorry you have been feeling rough. I hope you will be better on Taxol. I am now on Docetaxel “T” like Dikat and seem to be better than on FEC.

Good luck xx

Member

Re: January 2019 chemo starters

Hi B74

I am still having Filgrastim with T but mine is Docetaxel and 3 wkly so it’s probably different with your regime. Drummerswidow from Dec thread is having Paclitaxel fortnightly so maybe she will be able to answer any questions you have. Hope the Pax is kind to you. Sending hugs 🤗 

B74
Member

Re: January 2019 chemo starters

Hi everyone, I’ve just been catching up on weeks of posts after steering clear of all things chemo-related for a while (I got to the point where I could barely even say the word without wanting to vomit). I’m sorry to hear about hospital stays and all the array of side effects... but glad we are slowly progressing through. I’m about to start 12 weeks of weekly Taxol (paclitaxel) after finishing my 4th dose of AC 3 weeks ago. The onc says it’s ‘easier’ than AC but I’m really scared about adjusting to a new drug. Sounds like lots of you are already on Taxol, I’m just wondering if everyone experiencing joint/bone pain is also having filgrastim? I had it with AC & the aching was awful but I’m told I don’t need it for Taxol. I’m dreading more taste changes, food has already lost most of its appeal (I still eat a lot but there’s not much I really enjoy). Take care everyone ❤️

Member

Re: January 2019 chemo starters

 
Member

Re: January 2019 chemo starters

Hi Dikat

thank you for all of this info. I think my night sweats and occasional day time flushes must now be related to a chemical menopause. It’s a pain waking up and pulling the blankets off in the middle of the night. But hey, ho. I’m hoping in a way that is the start of my menopause because I don’t want any ovarian suppression injections after treatment. The onc is going to test my bloods at the end of the chemo6.

im sorry you are struggling with joint pains. I hope you can get them under control. Thinking of you and thank you so much for the info. I am currently in the hospital now getting chemo5.

see how I get on 🤞🤞🤞🤞

Member

Re: January 2019 chemo starters

Hi Sunnydaze

to answer your Dec thread first, yes my eyebrows are thinning and eyelashes but I have grown a soft fluffy covering on my head, legs and lady garden!

With regards to your liver bloods, yes mine have been raised. I was quite alarmed the first time I saw them but guess they have a threshold where they delay chemo if they’re too high. This happened to Jayne1966 one cycle. Like everything else it takes a battering and I get quite a lot of discomfort in that area. The Oncologist said the pain was more likely my IBS/Diverticular disease but I’m not convinced. Just something else to stress about. I had a partial hysterectomy almost 10 years ago when I was 40 so I’ve not had periods since but still have my ovaries so get all the monthly symptoms. I was having some night sweats before I was diagnosed but had blood test and told I wasn’t menopausal. I too am waking in the night feeling hot one minute then cold the next. Will try and ask the Oncologist next time if it is start of chemically induced menopause and whether bloods get checked for it. Guessing if it is, it doesn’t revert, especially with me turning 50 shortly. The first 7 days of this cycle had been much easier for me this time but the aches and pains have kicked in big time today. Currently in an Epsom salts bath! I don’t think my pains are helped by having 7 Filgrastim though which I started on day 3. I just have Ibuprofen and paracetamol and alternate them 4 hourly to try and take edge off the pain and keep on top of it. You probably won’t remember from prev conversations but I don’t tolerate codeine 🤮. My visions started to be a bit weird again. Nothing seems sharp but it does seem to sort itself out just before next cycle. One of the worst things for me is definitely the taste issue, especially as I’m fancying things. Sorry for the essay Sunnydaze and hope your infusion doesn’t take too long 😘xx

Member

Re: January 2019 chemo starters

Ahh Thanks Dikat.

im a bit apprehensive, one of my liver functions ATLwas a little bit raised so I’m currently googling how I can help with diet. I haven’t drunk any alcohol since August and wasn’t a big drinker anyway. The hospitalatent concerned, but I want to improve my score with diet if I can. Blueberries, bananas, avocado, green veg and omega 3 , walnuts and sunflower seeds seem to be be suggested.

i wonderedif you are having hot sweats any one on T? I have very bad night sweats in bed at night  and a few hot flushes througout  the day. A bit annoying, but manageable. I wondered if this is a start of a chemically induced menopause. I have currently had 3 periods during chemo, but not one during chemo four, just flushed. I just wondered if any one else has this problem?

i also wondered how you’re getting on with T2 Dikat, Wahini and LB  is it worse than T1? I hope you have got good drugs to control the pain . Send you all a big hug in sisterhood.

sumnydaze xxx

Member

Re: January 2019 chemo starters

Hi Sunnydaze

Just wanted to wish you well for T2 today. Hope this cycle is kind to you xx

 

 

 

Member

Re: January 2019 chemo starters

Hi Susie B,

Your trial sounds great and I wish that I had such an opportunity. I have already had surgery. I truly hope this way forward is successful for you. It’s great that your lump has already shrunk. It’s all so traumatic isn’t it and I  wouldn’t wish it on my worst enemy. But hey ho, here we are doing our best getting  through treatment, in the  hope it never comes back.🤞

I have been ok on my first T and I hope you will be too. I was absolutely dreading T.  I am prone to joint pain and I  thought it would be far worse than  when I was on FEC, but so far it has been ok.  I guess everybody reacts differently and it’s so hard to predict,  but sending you loads of luck Susie B. I have T2 on Wednesday 😲

Sunnydazexx

 

Member

Re: January 2019 chemo starters

Hi Sunnydaze

Just popped in from the February group and saw your comment about FEC and Docetaxel. I'm  currently on a trial and have been on FEC for three cycles with my 4th and final one due prior to surgery. The chemo has been successful and shrunk my small lump (21mm) significantly. I was concerned about about going onto CT (Docetaxel) after my surgery as I've tolerated the FEC really well but have read some not so good things about  T.. You've made me feel a bit more at ease so thank you. xx  . 

LB
Member

Re: January 2019 chemo starters

Thankyou Kip i’m Going to try some of that 🤗

Kip Community Champion
Community Champion

Re: January 2019 chemo starters

Hello Jan ladies... sorry to hear some of you are suffering and having hospital sleep overs.   I had one too during the first round of T.   I can see some of you are struggling with mouth issues.. the biggest yuck ever!   I had oral thrush and had flucozonale every cycle after and started it as soon as I got a minute tingle in the mouth.. definately helped it from getting to bad.   My mouth was thick white and coated and felt like lard... blurgh..   I found lime cordial cut through a bit and didn't taste too bad, tonic water helped.  I was also bought some teas (fruit flavours) from Whitards.  They come in  tub (bit like a hot chocolate) and you just add hot water...I found I could taste those and they were quite soothing on a sore mouth.. I'll see if I can upload a photo... anything worth a try hey.

Take care all

Kip

15530812314037038635473800385475.jpg

 

Member

Re: January 2019 chemo starters

... and i’m out!

 

Thank you all for your kind words. This admission was particularly unpleasant as they put me in a bay with some very sick people. I think I’ve seen and heard enough to last me a lifetime... 

 

Hopefully they can come up with a plan for the next cycle as I really don’t fancy ending up with neutropenic sepsis for a third time! Aghhhh 

 

Hope everyone is doing well this week 👍😀

 

LB
Member

Re: January 2019 chemo starters

Hi MaMaJuJu

a scarf around the mouth and nose - I am going to do that 😊 I think I picked up this cough from someone behind me in a queue - she coughed and sneezed and my hubby practically picked me up by the shoulders and put me in front of him 😂😂😂😂 

hugs to all 🤗xxx

Member

Re: January 2019 chemo starters

Hi There,

 

@Sunnydaze, thanks for the info on the oils. I have done just that and hoping for the best. I am really looking forward to my hair growing back in. I am not that far away from that happening 😀.

 

@LB, thanks for the info on the nails, I will keep mine on for the duration although I will need to take it off and re-apply. Also, sorry to hear you were in hospital but glad to hear that the news was positive. Wishing you a speedy recovery. You do get really paranoid about infection. If I am in a shop I tend to walk about with a scarf round my nose and mouth.

I have been the same with food, the food that I tolerated during the EC cycles I don’t even want to touch now. Not sure if it is a reminder of how awful I felt. 

 

@Sparkie2001, I hope the neutrophils are increasing and wishing you a speedy recover. 

 

Nite nite everyone, will be back in touch soon.

 

xxxx

LB
Member

Re: January 2019 chemo starters

I’m just back from a morning at the hospital 🏥 I coughed all night and rang the emergency chemo number this morning. I was worried 😟 as we all are about infection ☹️ I had a full MOT of bloods, temperature, ECG  and blood pressure. Luckily all okay. Found out I have a calcium deficiency which they’re going to give me supplements for. Sadly other patients not so lucky and had sepsis so although it seemed an overreaction it wasn’t. 

A whole new world 🥴 

hugs to all keep well 

LB xxx🤗

Member

Re: January 2019 chemo starters

Thanks LB - i’ll dig out some nail varnish in time for T. I’m afraid i’m very squeamish about nails at the best of times so the thought of them going wrong fills me with dread. I’m also struggling to find anything nice to drink at the moment. Who’d have thought water could taste so uniquely vile! Roll on mouth revival time. 

 

DiKat - yes they’re jabbing me on a daily basis with filigrastin so with a bit of luck my body will stop fighting it and take the hint soon. I thought I may get away with it this cycle as they let me have the slow release jab the day after chemo but it just hasn’t worked🤭

 

LB
Member

Re: January 2019 chemo starters

Hi MaMaJuJu

regarding the dark nail varnish- I had this chat with my nurse at my chemo on Tuesday- she said to keep it on all the time and even to go onto the sides and cuticles to keep them protected. She told me about twins who were diagnosed and treated at the same time. 1 twin was treated in Scotland and the other in London. The one in London was told about nail varnish the other wasn’t. The one who had the nail varnish kept her nails but her twin didn’t do so well. 

I’m day 4 of FECx4 and feel awful - I am not finding much to help my horrible mouth - tea and coffee and water -uuuurrghh ! Things I found worked before I can’t stand the thought of now ☹️ I know I’ll feel better next week but fed up in the meantime 🥴 

hugs to you all going through this too 🤗🤗🤗

Member

Re: January 2019 chemo starters

Sparkie2001 Oh no shame about the neutrophils. Are you having more Filgrastim injections?

On the taste front, mine is like an overly salty slimy like feeling. Sweet things taste too sweet too. Like Sunnydaze says though, not nice but manageable. I’ve got some Elderflower cordial which I have with plain fizzy water, that seems to cut through it a little.

Fingers crossed you escape soon! Xx

Member

Re: January 2019 chemo starters

Thanks Sunnydaze 👍

 

Right, bring on the T! I am almost looking forward to changing drugs and getting this hideous FEC bit over and done with. 

 

Alas my neutrophils have decided to drop even further today so no escape for me. Aghhhhhh. X 

Member

Re: January 2019 chemo starters

Hi Sparkie

I ended up with thrush in my mouth. A white furry tongue, 3 days into T. Yuck. I was given Fluconazole and it has worked quickly, but my Onc told me thrush with chemo can  be a recurring problem. Some food just  now is a bit bland and tasteless. Not great but doable. I can live with it, as long as it does not get worse.

Member

Re: January 2019 chemo starters

Thanks Dikat and Sunnydaze! I think I would much rather try my luck with some joint pain and fatigue instead of the FEC nastiness Smiley Happy

 

Can I ask how odd are the taste changes please? I have been getting a very manky mouth so far - it’s almost like the roof of my mouth changes texture and tea tastes absolutely disgusting. Has anything worked to try and counteract it a bit? 

 

Fingers crossed my neutrophils will get their act together shortly so I can hot foot it out of here. I do hate hospitals. Yuck. 

 

 

 

 

 

Member

Re: January 2019 chemo starters

Hi sparkie2001

Im from Dec thread. Just wanted to let you know, I really wasn’t good with FEC. Neutropenic sepsis after first cycle and neutropenic (but no infection) after 3rd cycle along with many other side effects. I had my first tax 17 days ago and although I have experienced lots of side effects with that too, I have found it better than FEC so far! Like you say, none of the spaced out freakiness which I hated. So fingers crossed things will be better for you. Hope you feel better and get out of hospital soon x

Member

Re: January 2019 chemo starters

Hi Mamma Ju Ju,

I’m not very scientific I’m afraid and just shake a couple or so of drops of rosemary oil into a small amount of almond oil, rub it in and hope for the best😂

I am also suffering from a bloated and distended tummy. I think it’s extra sensitive for me because of my scar from my recent Diep surgery.

Sunnydaze xx

Member

Re: January 2019 chemo starters

Hi Sparkie,

Welcome back  to the chemo club 🤣It’s  just as s*** as ever it was, we’re still  ploughing  through the crap each day. It sounds like you are too and I’m sorry to hear you’re back in Casa NHS ☹️. Harrumph! I hope everything settles down soon for you . So unlucky to be neutropenic twice. You deserve a bit of luck.

Talking about Docetaxel, it definitely is better than FEC for me, definitely less spaced out and no nausea, mainly joint pain, taste changes and fatigue.

Hope you’re home again soon.

Sunnydaze xx

 

Member

Re: January 2019 chemo starters

Hello all

 

I’m back! Finally got the all clear to start chemo again last week so am now over a month behind schedule and thoroughly fed up. To make things even more complicated I’m back at Casa NHS with neutropenia again! Aghhhhhh. I do not think I am very good at this chemo lark. 

 

Sounds like everyone is making good progress tho. Am v interested to see how people are getting on with the docetaxel and hoping it’ll bring less of the spaced out freakiness than FEC. 

 

Smiley Sad

 

 

Member

Re: January 2019 chemo starters

Good Afternoon All,

 

I hope everyone is doing as well as expected.

 

So I had cycle number 4 last Friday. I have been given Abraxane which is part of the Taxol family so similar side effects.

 

The side effects kicked in on Day 2. Fluey feelings with achey joints and muscles. I have also had bad pains in my stomach too which isn’t pleasant. I do think this is because I have a very sensitive stomach. The achey joints and muscle pain is starting to get a bit better but stomach is still sore and feels bloated.....almost as if there is trapped wind. I spoke to the breast care Nurse this afternoon and she has advised that if it is not better by next week then I have to call the cancer line. Fingers crossed it is. 

 

I have a couple of questions to ask.

 

1) @Sunnydaze, how much almond oil and rosemary oil do you use for your scalp. 100ml almond oil along with a couple of drops of rosemary essential oil?

 

2) I have been wearing the dark nail polish but I was wondering how long you keep it on for? Is it through all cycles of Taxol or just while getting the treatment and a couple of days after? 

 

Any help would be greatly appreciated.

 

Thinking if you all and sending you lots of love xxx

LB2
Member

Re: January 2019 chemo starters

Yes Sunnydaze I am on 7 Filgrastim injections and do have pain from them, mainly in my back. I think I was getting that kick in just as the docetaxol pain was easing. 

 

Good on you for getting out and about despite feeling like crap.

 

it is so good to know others are experiencing the same side effects, gives some comfort to know we are not alone on this horrendous BC experience X