October 2020 Chemo Starters

[UmLydia]

Hello Naj, how are you doing? Did you go forward with next chemo treatment? Maybe they are decreasing the dose to protect you from sepsis happening again hope it goes better this time. 

Docetaxel affects the nerves in hand and feet and the nails. Hope your thumb nails are not falling off.

My thrush cleared up with the cream, i get nasty taste in my mouth as well. I have lost most of my eyelashes and have a grungy eye, i get that a lot. I definitely feel much less energetic even in the second week after treatment. 

So sorry you had to self isolate over the Christmas period. 

Sending big hugs. 

Umlydia

[Sugapiesan]

Hi Jo,

I’ve hopped over from November chemo starters to get some pre warning on what is to come next for me. I’ve just had the third and final dose of EC and feeling pretty low and head very fuzzy. I wanted to know what Dotaxel will be like as I have three rounds of that next, again with three weeks in between, any insights you have would be helpful for me to mentally prepare. Hope I have the name of the drug correct! 

[Guest user]

Hi everyone and Merry Christmas for tomorrow,

My chemo was cancelled due to me having contact with a confirmed covid patient.  I do feel a bit cheesed off because my test was negative and I was told I didn't need to self-isolate and chemo would go ahead - this from the ward consultant.  On Monday my oncologist rang me to discuss how the first docetaxel had gone and she said I should have been told to self-isolate for 14 days - great - I'd been home for a week by then being careful but not to the standard demanded by self-isolation.  I'm slightly concerned that my picc line won't get flushed through for 15 days after I'd been told it should be done weekly.

Umlydia - I had terrible oral thrush this time - the worst I've ever had it.  I've been told that next round the fluconazole will start on day 5 rather than day 8.  I was given Nystatin at the hospital.  It has gone now thank goodness but my taste has been badly affected and almost everything tastes awful.  I also had aches and pains that weren't too bad but my thumbnails hurt and one of my toenails is really painful - odd.  They are going to reduce my dose of docetaxel.  The problem is that we don't know whether the complete exhaustion was due to the drug or to the sepsis.  

I hope that everyone has the best Christmas possible.  

NAJ xx

[Karen19]

Hi Umlydia,

So sorry to hear about your problem. It sounds awful. Like you, I get oral thrush after every treatment and have had to take a course of Fluconazole each time. I wonder whether this could also be used for your problem, but your rapid response team will know the answer. Your symptoms also sound like your condition may be piles which can arise if you have had constipation?

I really hope that you can get something to treat it ASAP and that you are able to enjoy tomorrow.

Merry Christmas and take lots of care x

[Shi]

Please ring your rapid response it might need antibiotics ASAP, please keep safe ❤️ Remember during chemo it’s not like normal and you always needs to rapid response everything to your team to ensure you get safely through ❤️💕💕✨✨Shi xx

[UmLydia]

Hi everyone

Got an unchristmassy message, has anyone had (this is gross and horrible ) anal thrush? I think I have it, sore and itchy and throbbing... i saw my GP yesterday but i was too embarrassed to show him, so i described my symptoms and he prescribed an antifungal cream. But at the moment it is getting worse not better..... pretty miserable and embarrassing.  I do have it in my mouth as well but it doesnt bother me so much and i have a mouthwash that works... are there any pills i can take ? 

Luckily i am going to my inlaws for xmas (they haven't banned it in France but do try to make you feel guilty for seeing your family ) so the kids will be fed and entertained. I will fade into the background. 

Feeling run down after second docetaxel but this time at least don't have aches and pain... only bum thrush 😞 (I think)

Hope you all well and managing not to get depressed with the new corona measures. 

Big hugs. Merry xmas. 

[Karen19]

So pleased to hear that everyone seems to be in a better place than they were at the start of the week!

York-75 amazing that you have finished your chemo. Must be such a great feeling. x

I start docetaxel and herceptin between Christmas and New Year. Hoping they are kinder than FEC which made me really sick and dizzy all the time.

Stay safe everyone and make the most of the days where we don’t have the dreaded side effects.

So looking forward to a “normal” post treatment life 🥳

x

[UmLydia]

So glad you are home NAJ!! What a relief that must be. Hope you starting to feel better.

Congratulations York 75 on ending chemo. So happy for you. 

I'm having second round of docetaxel. Feeling reassured because the oncologist said the exhaustion and pain was probably an effect of the immunity injections as much as the chemo and that the explosion of white blood cells can cause symptoms like i had. 

[chesterbrownbear]

Not a Jockey, I’m so glad you are home, at least you can rest better there. Yes I had docetaxel the same day as you, my next 1 is Christmas Eve 😬, at least I shouldn’t feel too bad for Christmas Day and Boxing Day, but no alcohol 😮. On a lighter note, the other day my whispy bits of hair needed a trim. I got out the hair trimmers, and last time I used no 8, which is about an inch long. Well I started and did about 3 strokes and thought wow my hair has grown quite a bit. Then I looked at the trimmers and I forgot to put the guard on, so I have 3 hedgehog stripes 🤪. The thing is I didn’t get upset, because my hair looks terrible anyway, so I just put the guard on, and carried on.  MERRY CHRISTMAS TO YOU ALL, and look after yourselves🎄🎄🎄🎅🏻🎅🏻🎅🏻🎉🎉💪💪

[Jo22]

Congratulations York75!

Hope the radiotherapy & tamoxifen goes well. 

Keep in touch! 

Jo xx

[York-75]

NAJ I’m so glad you are home!

wWhat a scary ordeal for you, no wonder you are pleased to be home. Xx

Well I had my last chemo today (I had 4 rounds of nab-paclitaxel) and got to ring a bell and everything. I dinged it a bit too hard and a nurse jumped out of the room next door as I gave her such a shock. 😆

I brought in some chocolate and nice coffee for the staff. It feels like a bit of a cheat to get to ding the bell already, as I have to keep going back for Herceptin injections, but that will be quick, and I don’t need bloods doing each time. Radiotherapy and tamoxifen from January, and off I go. Onwards and upwards! X

[Guest user]

Hi Everyone,

The shouty patient with covid was moved late on Monday and I can't tell what a relief it was to everyone on the ward.  I was sent home from hospital yesterday after a negative rapid covid test and because my infection markers had dropped enough for them to let me home with another 7 days worth of antibiotics.  

For me docetaxel was pretty miserable.  Had my chemo on Thursday 3rd, felt great until the Monday when my energy levels fell off a cliff and I got the dreaded oral thrush.  After spending almost 36 hours sleeping I then went to the chemo bus on Wednesday to have my picc line flushed and they took my temperature and sent me off to hospital.  I don't really know if the exhaustion was due to the drugs or to the sepsis because I felt like that the last time I had it.  CBB - I had exactly the same thing with my nails - particularly my thumb nails - weird.  So glad to be home and just resting in peace and quiet.  Next dose on 23rd.  Hoping for a better result next time.

Good luck to everyone.

NAJ xxx

[Shi]

Teary not testy 🙄 sorry text gremlins 💕💕✨✨Shi xx

[Shi]

Chester brown bear ❤️❤️ Docetaxol can may you weepy, I remember it made a few of us but more testy, some people sail through docetaxol other it’s another challenge that you will kick its arse, it’s just it can kick yours first before you get your boots on a kick it back ❤️ Sending ❤️❤️💕💕✨✨Shi xx

[UmLydia]

Chesterbrown bear that must have been frightening to pass out like that. I can understand not wanting to go to hospital, unless you really don't have a choice. Its good you didn't.  

I felt depressed and cried on docetaxel and I wonder if it is the effect of coming off the steroids as well. In any case it is miserable and tough. Yesterday i actually went to an excercise class organised by my cancer hospital (muscle building!), it was great. Too hard for me i felt sick and had to stop (embarrassing-plus all the other ladies were older than me). But i still feel more energetic today. 

Enjoying the last days of feeling ok before Friday next docetaxel-still 3 to go. At least i know what to expect this time. 

[chesterbrownbear]

Hi all

oh dear Not a Jockey I feel so sorry for you, chemos bad enough, let alone what you are going through.

I haven’t been on this page for a while as I wanted to end my post on a positive note. On 3rd December I had my first Docetaxol session, I have been quite apprehensive as again it’s the unknown.  Same as before the Friday and Saturday I didn’t feel too bad, but Sunday morning after breakfast, I passed out. My poor husband hand a clue what was going on, he laid me on floor with a pillow under my head  ( not in the recovery position), and I eventually came round. We did call the hospital, and after taking my temperature they suggested I went to a&e. I know I should have gone but the coronavirus does worry me.  We decided if I had another funny turn I would then go.  After that the symptoms are flu like and exhaustion, plus it feels like finger nails are being picked off ( but they are still there). I also have felt really depressed, and I’ve been on the phone crying  to Macmillan. Yesterday was the first day I managed to go for a short walk, so recovery is taking longer but at least I am again getting there. 
Everyone please look after yourselves, and have a lovely safe Christmas 💪💪🎄🎄🎅🏻🎅🏻💕💕

[UmLydia]

NAJ that sounds so awful and shocking. Can you not threaten to sue them? Anything to get them to react. How can they leave a covid patient in the same ward as you? I feel really sad and angry for you. It must have been bad enough putting up with the shouting and the abuse you got from the manic one... but this is too much. Its dangerous. Fight back. Tell them you are really legitimately worried and this is not acceptable.  

Hope at least you are starting to feel better and can get out of there like a bat out of hell.... 

Sending you hugs and more courage even though you are so brave already , really really hope you get back home very soon. 

Umlydia

[Shi]

Naj ❤️ Any chance they can give you mask and pull curtain round you 🤞🤞you get home soon 💕💕✨✨Shi xx

[whiters14]

NAJ

It sounds like you are having a really rough time of it and now covid on the top of it.

Fingers crossed you are home soon x

[Guest user]

Thankyou everyone for your kind wishes which I really appreciate. 

Unfortunately the shouty patient in the bed next to me has tested positive for covid. You couldn’t make this up. 

There is no bed for me in the Macmillan unit and they still haven’t moved her. Because of her dementia she won’t wear a mask. Definitely feeling vulnerable. 

NAJ xxx

[Shi]

Naj can you pull curtain round and stick some headphones on and stress that you would appreciate moving to another ward as soon as possible and you understand it’s difficult but you need to rest and get well yourself and don’t need constant unrestfulness around you. It’s knackering enough having stint in casa nhs without all the additional drama you are also unfortunately dealing with while in there too ❤️Sending ❤️👭❤️💕💕✨✨Shi xx

[Jo22]

What a shame SU, I really understand the wish to get out and do something normal and as you say you protected yourself as best you could. Hope your symptoms are mild and you feel better soon. xxxx

[Jo22]

Crikey NAJ, that sound's like a nightmare. So sorry you are going through that. Fingers crossed they let you home soon. xxxx

[Jo22]

That's awesome York-75, you sound really upbeat!

My husband had radiotherapy for prostate cancer and he was nowhere near as tired as me going through chemo so your oncologist is probably right, albeit flippant! lol

Re the vaccines I'm pleased you have said that as I was worried they would force us to have it and as it hasn't been tested on anyone clinically vulnerable, I am not ready to be a guinea pig yet. Please don't get me wrong, I am not an anti-vaxxer at all, just happier to stay indoors isolating until my body is strong again.

I'm really pleased your end is in sight York-75, you're nearly there !!! xx

[Guest user]

Ok so P had mania and literally gabbled all day. Started at 5.30am and was moved at midnight. She decided I had alopecia and was taking up a bed unnecessarily and roundly abused me at high volume. The staff were mortified and it did take its toll and I got a bit tearful - I’d be thrilled to have alopecia rather than cancer and be on chemo. A few hours of peace (not counting the 4 hourly obs and IV antibiotics) before F was moved onto the ward. She has a chest infection, SHOUTS constantly - never more than a seven second gap. Starts when the first meds round begins at 5.30am and just goes on and on..... The staff are run ragged and apologetic but what can they do?  No space on the Macmillan unit for me. Not sure the stress is helping my recovery. I do feel like I have a bit more energy and my temperature is heading in the right direction so this is good but I will be more than glad to get home. 

Love to everyone. 

NAJ xxx

[York-75]

Hi everyone, 

I spoke to my oncologist this week, and asked about the covid vaccine. As an NHS employee I should be in round 2 of the priority list, so I’m hoping that when my trust gets a supply, it won’t be too long until I am offered one. We don’t have any yet- guess it depends on supply.

The answer was: In the chemo cycle itself they don’t want you to have it, as your immune system will not be strong enough to give an immune response. As in, your body won’t be able to create the antibodies. (I hope I explained that right, I’m not medical.) 

But you can have it after, so 3-4 weeks after the last chemo. I have my last one on December 16th, and the chances of me offered the vaccine before 6th January are slim. So fingers crossed I’ll be allowed to have it when I get it offered. 
I know many of you have a longer period of chemo to go, and I hope it passes quickly. Hang in there, you can do it!

I was also told I would be suitable for the fast forward radiotherapy, so I get 5 sessions, one week, instead if the usual 15 sessions. 
So depending on the dates I get offered for radiotherapy, I hope to start my phased return to work in January. I am simultaneously looking forward to it and feeling a bit apprehensive.

I said I’d heard some people get very tired from radiotherapy. The oncologist said that was probably people who hadn’t experienced chemo! I know he was just being a bit flippant- not wishing to invalidate the experience of others, but rather saying that the majority cope fine, and it is much easier than chemo. So I hope he is right about that.

I feel like the end is in sight. I know I’ll be one of the first if us to say that- but I hope you may feel comforted to hear that it feels really positive and exciting. Like a second chance I never knew I’d need.

Yours will be here soon, love to all!

[York-75]

Hi the NAJ, how are feeling?

Getting sepsis a second time is really rotten luck, I’m so sorry. How many days to go now? It is really impossible to sleep well in hospital, isn’t it? I hope you have earplugs and an eye mask, that can help. Or if you have those little sleep hats, I find I sleep a bit better if I pull it down over my eyes! 😆

I wish you a speedy recovery! X

[York-75]

Oh no SU, I’m so sorry you have ended up with covid. How are you feeling now?

I am keeping my fingers crossed that your symptoms stay mild and you are able to manage at home.

[UmLydia]

Hi NAJ 

Sounds dismal. Hope you manage to recover and rest despite being in a kind of lunatic asylum. What a challenge.  Hope they have the sepsis under control. You will be home soon hopefully.  You had chemo on Thursday didn't you? Do the doctors think you got sepsis after a cold?

Sending a big hug!! You will get through this. 

Umlydia

[Strangely upbeat]

Hi Jo22

if I had known my short visit would have ended up with Covid, I wouldn’t have bothered.  I knew most of the shops I wanted to got to and what I wanted so was in and out most quickly, I wore my mask and tried to keep a safe distance but there were a couple of stores where others weren’t as considerate!  Also used contactless in most stores but had use key pads in a couple because they were over the contactless limit.

Meadowhall is definitely where I picked it up as my pre chemo covid test the day before was negative and I hadn’t been anywhere else.

Take care SU xx

[Strangely upbeat]

Hi NAJ

The dementia patients are great are they.  Luckily for me, due to testing covid positive, I had my own room and toilet.

I hope you feel better soon, sending big hugs SU xx

[Jo22]

Hi Whiters14,

Sorry you're feeling crappy. I had a real downer after my 3rd session of EC but it did end after about 10 days. Not sure if its the oestrogen production packing up as I'm premenopausal or what? I'm trying to keep upbeat too but you're right it is hard especially with Xmas being so different this year, im not feeling festive at all despite decorating the house, buying gifts etc. I think maybe Xmas to me means seeing people & thats just not an option this year.

I also like to get out and about so have found myself at a loose end quite often in the house! 😁 So I've worked a bit and tried to sort out cupboards as I'm not a big tv watcher but some boxsets have kept the boredom at bay. 

I hope your spirits lift lovely. 

Jo xxx

[Jo22]

So sorry to hear this NAJ, wishing you a speedy recovery and exit from the geriatric ward!!! Xxx

[Jo22]

Hi SU & everyone,

Not posted for a while as have been working, which has been great! 4th cycle EC on Thursday so back to a week of fatigue etc. as we all know well. 

SU, I'm so sorry to hear you have had sepsis & covid but im so glad you posted & I hope your symptoms improve quickly. I have been desperate to get out and was thinking of having a Christmas shopping day in a week or so at meadowhall! But maybe not now! 

My boys both came home yesterday one from work in Germany the other from St.Andrews amuni and I desperately want to hug them but again feel I should be ultra careful after your post. 

Lots of hugs SU & hope you feel better soon xx

[Shi]

Naj 👭 sorry to hear you are back at casa nhs ❤️ Can you put some headphones on and block the other noises out from ward? It might help so you can zone the other background noise out 🤞 hope they get everything sorted and you manage to get home before 5 days 💪💪 💕💕✨✨Shi xx

[Karen19]

Hi everyone,

I’m so sorry to hear that so many are really going through the mill right now.

I had my third round of FEC on Tuesday and was horrendously sick again and now have the usual side effects, but no comparison to having Sepsis or Covid.

Seriously wishing everyone a speedy recovery and a smooth run for the rest of our treatment programmes.

Take care and lots of love X

[Guest user]

Hi SU

I’m currently  in hospital with sepsis. Think the common cold floored me. On a ward full of old ladies with dementia. May well  kill one of them soon. She hasn’t stopped talking since 5.30am. Told I’ll be in at least 5 nights. Who knew you could get it twice. And it was all going moderately well ....

love and hugs to everyone 

NAJ xx

[Strangely upbeat]

Hi ladies, I’ve not posted for a while Chemo 2 really took it out on me and I was so fatigued.

I had my antiemetics changed again for chemo 3 last Friday and they have really helped, still had nausea but no vomiting which is much better.

However, just when you think things can’t get any worse!!!

However, on Sunday day I had a temperature so had to go to a&e. I was admitted with sepsis and on Monday I was told this was caused due to testing positive for Covid. I am home now and feeling ok, just my usual post chemo side effects which are pretty much the same as Covid symptoms.

It’s been 4 days since I tested positive and I am now starting with the Covid cough.  It just shows how long a normal person could be carrying it without any symptoms.  I think if it wasn’t for the chemo and have to be aware of the effects this can cause, I would have been oblivious to it.

I am a bit annoyed with myself because, it’s me that has brought it in to our home. On Thursday my last good day before chemo, I decided to go and do my Christmas shopping, I was at Meadowhall for 1.5 hours and went in 9 shops, I wore my mask, tried to keep a safe distance etc but managed to pick the virus up from somewhere.

So far I have been lucky but want to say, be careful ladies and maybe stick to online shopping 🛍 xx

[bikergirl1]

Hi Whiiers14

I’m on a similar camp to you, I have my third EC this Friday and then I move to Doxitacel in the new year. I feel that it’s hanging over me like a dark cloud, my breast nurse told me not to think about it as I’m not there yet and to just take a step at a time and I know she’s right but I can’t help but worry about it, I guess it’s just the unknown. 

I currently have a cold which has floored me but the only saving grace at the moment is that my temperature has stayed within limits but I resorted to laying on the sofa with my duvet yesterday and watching films 🤷🏻‍♀️ 

[UmLydia]

Hi Whithers

Sorry to hear you are suffering. I think when we are in pain or have no energy to do anything even the most upbeat and positive person finds it hard... also when the side effects take us by surprise (if the third EC was worse than the first two) I think that is worse. 

I had an awful 10 days with docetaxel, it seemed like I would never feel better. It sounds silly but just make sure you rest a lot and don't feel guilty, do whatever you feel like, read, watch films, and get as much help as you can.... and its ok to feel miserable or sad. Sending you a big hug. 

I had to go to gynecological emergencies on Saturday because my GP thought my coil was infected when i went in with smelly discharge and burning urination.  False alarm. Luckily my kids had gone to their grandparents for the weekend and I could rest after that. Its a horrible phase we have to go through,  freaking out any time we have a bit of fever and suffering all the nasty side effects. I for one am not excited about xmas. Take it each day as it comes. 

Naj glad to hear you feel ok. 

Shi thanks so much for your concern. 

[Guest user]

Hi Whiters,

I felt the same.  My side effects did last a bit longer after my third EC and I was worried about moving to Docetaxel.  I had that on Thursday and so far so good but I finished the steroids today so it's just a case of wait and see.  Still on all the same meds - no peace for the wicked.

Keep well.  Cheesy Christmas movies and baking cakes are keeping me going.

NAJ xx

[whiters14]

Hi everyone 

I hope you have all had a good weekend. I’ve not written in a while but have been keeping up with your progress hope those who have treatment last week are doing ok.

I had my third ec on Tuesday and its hit me like a tonne of bricks together with the side effects of the filgrastin. I know I’m half way there but I’m struggling to see the light at the end of the tunnel. Everyone is getting excited for Christmas I’m just worrying about starting docetaxal and the unknown. 

I’m always so upbeat and hate this feeling does anyone have any tips!! 

🥺

[Guest user]

Hi Linflo

I was due to have chemo at 11am yesterday but I got a call at 9am asking me to go in at 10am so they could look at my arm - I've developed thrombo-phlebitis.  I was told I would have to have a picc line inserted before I could have my Doxetaxel so I was sent off to the medical treatment room to have that done.  This did mean I didn't have time to get all worked up and anxious about it.  The actual procedure was a doddle and I was able to have my chemo as scheduled but I did end up being at the hospital 4 hours.  It does feel slightly uncomfortable but that's just the fact you have this thing stuck on your arm.  Didn't interfere with sleep so that was good.  No side effects so far so I'm just waiting for those to kick in.  I came home with all the usual meds and injections so no relief there.  My next chemo is a day earlier on 23rd as all the people who have chemo on a Friday have now been moved to Thursday.

Hoping that everyone has the best weekend they can.  We have snow!

NAJ  xxx

[linflo58]

York-75

Thank you, arrived home after 8 hours on the ward! There was a delay in the chemo arriving. Luckily I had no other plans for the day 🤣. I’m actually feeling ok, slept well. I was surprised not to come home with the usual abundance of tablets, just paracetamol. I took that as a good sign. Apparently Abraxane is the more expensive alternative to Docetexal, & hopefully less side effects. It isn’t always prescribed. I’m going to have a lazy day today & hope for the best. Hope you’re feeling ok.

Linda xxxx

[York-75]

Hi Linda, 

hope it was ok, and that you are safely home and wrapped up warm! Fingers crossed your side effects are mild! 🤞🏻🤞🏻🤞🏻

[linflo58]

York-75

I’m sat in the chair, wired up as we speak. Thanks for the information & advice, much appreciated. Hope I don’t feel too bad, but if things get better after a week, should be ok. I wish I had shaved some days off as my next treatment is Christmas Eve. Think Christmas will be different this year anyway, so I’ll save myself for a big celebration when this cancer & covid are long gone.

Linda xxxx

[York-75]

Oh and Linda, the Herceptin stings a bit at first, but I have no side effects, sometimes a bit red and itchy at the injection site. I ask to warm it in my hand before they inject it. It takes 2-5 mins. 

[York-75]

Hi Linda, 

I am on Abraxane (nab-paclitaxel) and Herceptin injections.

I get an anti-sickness tablet first, but I haven’t had any sickness after. The solution is milky white and sometimes gets caught up as it is quite thick. It is just a flush, 30 mins infusion and flush again.

I have not been suffering terribly, just feel a bit useless in the first few days- tired, dizzy spells when I get tired, also rashes and itching. (Antihistamine helps a bit, aveeno cream, even good old sudocream when it is really red and sore.) Sometimes flu like symptoms, aches and chills, but a hot bath really helps. Usually after the first week I’m firmly on the up and able to do quite a bit, although might still need a little afternoon rest.

Hope you don’t find it too bad. I only have one left -jay!!! On December 16th, so hoping to start to feel ok by Christmas. My 6 year old keeps asking if I’ll be ok by Christmas. I have managed to get them to shave a day off each 3 week cycle, to bring it back so I can feel better. I’m on day 7 after round 3 today and I definitely feel better.

Um Lydia, please be vigilant and don’t be scared to call again if you feel worse, I’m sure even the unsympathetic french wouldn’t want you getting an infection! Sending lots of love you, it sounds really tough right now. Xxxx

[Guest user]

Hi UmLydia

You really need to keep a close eye on how you are feeling.  I had sepsis 3 years ago and I just felt like I had really bad flu.  When I got to A&E I had a temperature, rapid heartbeat, low blood pressure and a white blood cell count of 32 (should have been 4.5 - 11).  I felt terrible (had done for days) and my ankle was killing me - that was the source of my infection.

It is EXTREMELY UNLIKELY you would get sepsis but be vigilant.  On a first aid course this year we were told to ask the question 'could I have sepsis?'.

NAJ xxx

[Shi]

Sorry just read you called your team, odd they got you to go to go rather than get you in and assess you on unit? Must be different at your trust, guess they all operate differently ❤️ Just want you to be safe 💕💕✨✨Shi xx