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December 2020 Chemo Starters

Susie B
Member

Re: HiRe: December 2020 Chemo Starters

Hi Karden

Can't believe you're having your final chemo session today. That sounds good. Hopefully post surgery you won't need anymore but if you do just remind yourself that you are on a trial so there are no guarantees. Even if you get a good response don't  be alarmed if your onc recommends 2 more cycles of TC. It's something that is mentioned in the information pack. 

Wishing you all the best as you move forward towards your surgery. 

Susie B xx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Hi @donkeywoman 

My chemo is today but thank you for the best wishes, it is the last one of this block of 4 but I will find out after surgery in March if I need to follow up with 4 cycles of FEC ( hopefully not). I'm really pleased you will be having your last one and that you have got your vaccine dates. All good news! I had my 1st one a week ago but haven't got a 2nd date yet, they said I should wait to receive a text between 4 and 12 weeks on.

@grannyp Hope you are ok after your treatment.

Best wishes to everyone else. xx

 

 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Evening all, hope everyone's days are as good as  possible. @grannyp and @Karden have you had treatment today? Hope it went smoothly and your day didn't feel too long, @grannyp .

I got the letter today and have booked my covid vaccines, yippee! Next Tuesday for 1st one, 3 days before treatment, so hopefully immune system will cope. And the 2nd in May when 🤞 main chemo will be all over and I will be about to return to work (just Tratsuzomab injections and whatever oral stuff I'll be on). That was a good feeling.

Hope everyone is as cosy and comfy as possible this evening, sorry if I missed anyone else having treatment today, hope it went well xx

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hello @higgi 

Sorry to hear you are struggling, have you tried anti histamine for bone pain. I took it whilst on EC and the 7 day injections after it was recommended on here and it definitely helped.

Hope you feel brighter soon x

Pesto
Member

Re: HiRe: December 2020 Chemo Starters

 

 

 

 

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone! Day 7 post mubas plus docetaxel! Certainly more pain n weakness but managed a virtual cycle today . I still have the injections 7 days post chemo and I hate them ... don’t know why as you’d think after infusions I’d b laughing !!! But no .. think it’s cos I’m at home n I let my emotions out n I get fed up of it all ... plus I know that although they very necessary to reboot the bone marrow to produce the red n white cells to go again in 3 weeks ... the bone pain kicks in day 7/8 ... pulsating waves 🌊.. dread it ... but it lasts on n off 2/3 days 

although paclitaxel is similar to docetaxel they are different and as yet I not know how they decide which to give ?   Very jealous u not need the injections on paclitaxel . 
hope you all managing big hugs 🤗 xxx

 

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

hi @grannyp 

I am having paclitaxel weekly, slightly worried that it may build up but it has definitely been kinder so far and yes we do hear the horror stories and worry dont we, I think the unknown and worry is a given when on this journey 😁

 Not heard of filgrastim injections but as you say it's a pain but got to be done.

Its lovely if you see the same two nurses and they know you and your usual low BP.

Paclitaxel is administered via a drip so you can relax and no sickness......result! 

I am ticking each treatment off mentally, if I think I have 11 weeks plus surgery to go I feel like throwing in the towel so I just look at one treatment at a time.

Sending strength and good wishes for an easy time with your next treatment x

higgi
Member

Re: HiRe: December 2020 Chemo Starters

 
grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi @PaulineS27 

Thanks for the reassurance. When I raised concerns with the nurses at my last EC they all told me that their experience is that most people tolerate Paclitaxel very well. But I have heard a few horror stories recently - as always, we tend to hear about the people with problems rather than those who sail through! I am concerned that it appears to have an effect of lowering blood pressure and my BP is generally low normally but the nurses do know this as they have commented on liking to see a low-ish rather than high BP on treatment day. I have the same two nurses each time, so I should be reassured really that they do know me and my concerns etc.

I am only having Paclitaxel, so only one visit for me - that will be almost all day with cold capping time and I am not looking forward to that. So I do understand about not wanting to go back the next day. I have to go back each time 24 hours after treatment for the filgastrim injection and whilst I am very grateful that they do that for me it can be a bit of a drag going back in.

Good luck with the rest of your treatments and I hope you continue to respond well with no nasty side effects. x

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @grannyp 

I had my 1st paclitaxel and Herceptin and antibodies.l last week.

With the Herceptin and antibodies I was at the hospital all day for monitoring then went the next day for 2 hours of paclitaxel. Was unaware that I had to have them all separately so wasnt thrilled about a hospital visit the following day but it went smoothly so that's a positive 🙂

So far it has been a lot kinder than EC, although I understand the fear of the unknown. 

Take Care x

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @higgi 

Have you tried melotonin? you can get it as a suppliment on iherb or pipping rock or you can ask your gp.

I find it helps and is more natural than the sleeping tablets.

Hope the mouth soreness subsides 🙂 x

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Morning all,

@higgi so sorry you have all those side effects so soon. Good advice from @Karden (i'm on Docetaxel too) especially re the diahrroea. I left it too long the first time and then took loperamide and it stopped it immediately! I've taken lots of advice from folk on here about not holding back on taking extra meds to deal with the symptoms, even if it wouldn't be your natural way. Always worth ringing the team as well, just in case they have handy tips...

@grannyp - will have fingers crossed for you on Wednesday, with any luck the paclitaxel will be easier, not harder. But as ever, I recognise your wish not to go through any of it. I went for an ecg last week and although I was of course glad that it was normal, there was a bit of me that thought that if it wasn't, maybe they would stop the chemo! Daft thinking I know, but I do find the thought of another 2.5 months of this a bit much... But I find that knowing that there are lots of us here, while I obviously wouldn't wish it on any of you, there is something in solidarity. 

@Karden really hope  you keep the cold away and the snow doesn't slow anything up. I'm about a week behind you, but hopefully 4 down will feel like a good milestone.

Stay warm all xx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Hi @higgi  I'm so sorry you're discovering the side-effects of Docetaxel.

Here's what helps me:

Loperamide - loose bowels

Lidocaine and soluble aspirin for mouthwashes, really does make a difference. I also use Difflam mouthwash on a daily basis even before any symptoms.

I also have a sore and bloody nose lining and this can be helped by smearing Vaseline inside to help stop it drying out.

Speak to your team and ask them to prescribe whatever you need to get you through.

I'm about to have my 4th cycle on Thursday and you have my sympathy. It does get better if you can get the right meds to ease the way. 🤗🤗

 

 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi again @higgi We were obviously posting at the same time. Sorry you are not feeling good. Those side effects do sound unpleasant. Hope your team can help in some way. x

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi @higgi 

Good to hear that you safely got through the first round of your new drugs, especially after your vaccine reaction. I change to Paclitaxel on Wednesday & am extremely apprehensive. I didn’t have bad side effects with EC, although I was extremely tired after the 3rd round. But now back to fear of the unknown, along with just not wanting to do it!! At least I only have one long day in the unit & I just keep telling myself we can get through anything if we have to! 
Hope you have continued ok over the weekend & are able to eat & exercise - both of those have been so important to me, although the extreme tiredness last time affected the exercise. Kept on going with what I could & just kept walking if all else failed! 
As you say the end of this part of the treatment is now in sight. I have already had surgery and ‘just’ have radio to go &  the small matter of long term hormone tablets! I have my eyes firmly focused on 10 March, which will be my 6th & final chemo session. Just keeping fingers crossed that the snow & ice here at the moment doesn’t delay this week’s treatment. And also trying very hard not to pick up the cold that my husband currently has - that may be a fly in the ointment if I do. His cold did start when my immune system was at its best this last week & I am trying to do extra sanitising, etc etc but with a full house & nowhere for either of us to move out to I think it may be impossible to avoid. Still at least it is a cold & not Covid! 
Hope everyone has a good week & let’s get these next treatments kicked into touch x

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Thanks @Pesto  I only ever sleep til 1am ! Will ask about this . 
so 6 days into this bitch of a cycle ... (no reactions during infusions -  sats perfect so 🙏) .. Mubas plus docetaxel! Already mouth so sore (I love food !) nose bleeds n total body muscle joint pain !!!! Cud b a long 9 weeks 🤣 got to laugh NOT 

Ows everyone? It’s a cold one 🥶 xxx

Pesto
Member

Re: HiRe: December 2020 Chemo Starters

Hi sorry to jump on this thread....

 

re not sleeping, I have the same problem.   I get Zopiclone prescribed by by Mc millan team, not perfect but anything is better than being awake all night.

 

Big hugs

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone ! Glad to get through to Friday !!! All ok after the vaccine reaction scare and I passed my bloods n got to have the new regime chemo ! Had perjeta  wed no reaction and herceptin and docetaxel thur ... there 7 hours no reactions so massive PHEW !!! Already noticed very different to EC .. no headache yeh ! But loose bowels instead of constipation snd already starting with sore tongue !!! Got mouth wash going 🤣 

whereas with EC .. I cud taste all food n loved it ... I can see this will b very different! Unknown territory so treading carefully with this 1st cycle ... it’s cycle 4/6 for me and so get another on 23/2 then feels great as only 1 left in March 🤣🙌🤩💥 ... but I do have to have the dreaded but welcomed surgery 6 weeks later (full mastectomy n axillary clearance) and radio and possibly 18 more cycles of herceptin!!! 🤪... 

hope everyone is ok and safe as can be in our challenging times ! As long as I can exercise I am ok snd so far so good 😊 

still don’t sleep !! Anyone on meds for this ? I tried anti histamine... no effect ! 
big hugs to you all u are all doing amazing 😻 xxx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi @donkeywoman 
Those of us who have experienced a reaction to the vaccine may just be unlucky. And I view it that a day feeling under the weather is worth it. We have quite a few rough days at the moment, so what is one more??😂 I know several people who have had the vaccine with no reaction other than a sore arm. Guess our bodies have already been subject to so much battering recently that we are far more likely to suffer a reaction. I was certainly thinking of the experience suffered by @Guest user when monitoring my temperature & was so relieved that it didn’t go up to the dreaded number as I would have felt that I had to report it. I did have a bad A&E experience myself weeks ago & vowed I would only go back if absolutely necessary. This was right at the beginning of this whole experience when we are ultra cautious & it turned out I was perfectly ok. But several hours in what appeared to be a war zone was not pleasant. I was in a shielding waiting room & was initially seen within 45 minutes but things went downhill after that. For me the worst things were that 3 toilets out of 4 were out of order & the water cooler was broken. Basic facilities I would have thought! One poor lady in my waiting room was so desperate for water that she drank some from the basin that said ‘Not drinking water’! 
Anyway feeling a bit wiped out after a night with no sleep but hope an early night will sort that. And just desperately trying to stay positive for the last few weeks of this whole process. I think that feeling so well (apart from last night!) during the 2nd & 3rd weeks makes me even more reluctant to go back & be made to feel grim again! But it has to be done & only 4 & a half weeks left now. Not including the rough days after the last treatment in this - just counting down to that last day in the chair!! 
As always, good luck & good wishes to you all 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hello everyone, well the vaccine sounds harder than I was expecting. I've not heard yet, so will just relax and try to get my immune system boosted again! Hope @Karden and @grannyp that you are both having a restful day and feeling better. I will certainly be thinking of @higgi 's experience and avoiding going anywhere if my temp jumps. Thanks @dipitdee my heart rate has been fine since - just attention seeking I reckon 😁. Hope the home schooling is painless today and some weekend activity is easy to find... I'm feeling good today, even made myself a cooked breakfast! But I have oral thrush - fortunately I have spotted it early and my GP is prescribing me some Fluconazole and Difflam mouthwash (yuk, but worth it). As I've read on here various warnings about not being 'fobbed off' with Nystatin, I was all ready to challenge this when I rang the advice line, but the nurse went straight for Fluconazole. So no fight needed! I was up early for the cricket today so am off for a nap shortly.

Hope Friday is okay for everyone and that, @grannyp your fight/flight response isn't stopping you from resting. It does get harder to go back, I think... Fortunately I seem to have (so far) bounced back quite quickly, as otherwise I think I would have really struggled to drag myself back for more poisening. Two weeks to go, so I'm hoping to start feeling stronger soon xx 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone 

Pleased to see that we are all getting our vaccines. I also had the AZ vaccine yesterday. Glad it’s done but what a dreadful night. I had every one of what are listed as the most common side effects & virtually no sleep. Monitored my temperature all night & although it was raised it never went up to 38, which is the magic number for my hospital, and I could see it gradually coming down.  So I felt comfortable that I was just suffering vaccine side effects. Very sluggish now and don’t think I will move much today!! But the jab is done & we are all moving closer to the light at the end of the tunnel.

Hope everyone is feeling as well as possible. Another treatment coming up for many of us soon. 4th for me next Wednesday & a change to Paclitaxel. Really not liking the thought of a whole day in the unit and worried about the infusion itself after hearing about some horrible reactions to it. And the thought of going back to the horrible fatigue that hit after the 3rd cycle!! I am definitely in the mindset again where I just want to run away from it all. But somehow we keep getting through. I just keep reminding myself that there will only be 4 weeks to go. 
Have a good weekend everyone. We can do this!! x

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Well, I had my vaccine at home yesterday, the Oxford Astra Zeneca.

It was done by the district nurse and I was pleased not to have to go out and mix with other people who maybe hadn't been shielding.

I felt very cold last night even though the house was warm, just like starting with a cold/ flu really. My arm is a bit sore and I feel really sluggish this morning but nothing too serious. I think I'll just have an easy day.

Hope everyone else gets their vaccine soon. 👍👍

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone,

Another week down, can’t believe I’ve got number 4 next week. This one seems to have rolled around so quickly! @higgi I can’t believe they sent you to A&E! Isn’t there a ward for cancer patients they could have sent you to? That sounds like a terrifying experience! Hope you are feeling back to normal now. I’ve got my jab tomorrow so good to know that a temp is to be expected. @donkeywoman @Hope you’ve managed to get the heart rate down x @Woodybird its definitely chemo that makes us CEV as it lowers our immune system so I’d query it with your team. I’m also young (ish) (40) with no previous health conditions and pretty soon after I had my first meeting with my oncologist I received my shielding letter. 
Anyway, one more morning of ‘home schooling’ before trying to find ways to entertain a 3 year old this weekend! Take care everyone. 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hi @higgi and everyone, Think our posts must have crossed, as I've only just seen yours about your nightmare trip to A and E. That sounds so bad and I reckon that you did exactly the right thing by going home. I would have been horrified! Is it worth flagging up with your team, or even with PALS at the hospital? Glad you are feeling better and it clearly was the right thing. One to look out for if I ever get a vaccine.

How is everyone else doing? It's gone a bit quiet on this thread, hopefully that is because we are all doing okay... I'm definitely feeling more like me again this morning - Day 7, so can't complain really. I did end up at the GP surgery this morning, having an ECG , because my heart rate leapt up last night and this morning (between 90 and 116) and the team advised me that I should get it checked out. It was all fine, so I probably just need to chill out...

Love to all this Thursday xx

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Morning all, 

@Woodybird I thought that just having chemo made us CEV? I've not heard about a vaccine yet, but have been told by GP surgery that I'm on the list. Might be worth checking? 

@Karden sorry you've been rough after this one, especially that your awful mouth ulcers are back. Hope the wash reduces them soon...I'm on Docetaxel too (with carboplatin and tratsuzomab) and am really quite flawed this time. (3rd) I'm only on day 5, so realise I need to stop wingeing... But I just feel so much worse than I have done - everything feels so difficult! My HB has dropped, so I need to up my iron intake, but the thought of eating is so unappealing, even with taking metaclopramide. I just want to hide away until I feel better, but know that I need to keep moving, drinking and eating when I can. And the Filigrastim injections start today - joy.  Oops, started that sentence to offer support and then just moaned about myself. Sorry...

But it does seem a general thing - this 3rd round is really taking it out of us. I wonder if it carries on, or if the next one might be a bit easier...🤞. It's a good job we get a break before going back - if someone told me I had to go back this week, I think I would refuse!

Snow here today -so at least that is a good excuse to light the fire and stay cosy.

Hope your Tuesdays are as good as possible...xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Karden @I’m so sorry you having a difficult time but understandably as it sounds horrendous the mouth sore the not being able enjoy food and the fatigue... BUT ... u neatly done this whoop 🙌.. I’ve got it all to come as found EC OK .. no real issues at all . Hope u pick up soon . Xxx
however need share my recent experience.... 

Hi had a nightmare 24 hours following vaccine AZ ... fever n joint pain ... Christie’s (my cancer team) told me go a n e as I’m on chemo n temp was 37.5-38 ... They said they needed check out sepsis risk .. I knew enough to know that was highly unlikely (more likely b side effect of AZ as I ticked every box !) as it was day 21 post chemo n immune firing on all cylinders that’s why I’d had vaccine ... but they pushed me to go . So off I went snd was horrified to find out They didn’t honour my Willy wonker golden card(quick response put in side room n bloods done )  and instead had sit with everyone with covid !!!!! I had a guy coughing blood up who said he had covid pneumonia...
so I sat 10 min and left !!! Yeh it was a calculated risk ... if I died of covid Christie’s wouldn’t b accountable no one would ! So went home terrified but my temp was then down to 37.3 so I knew I was ok . I was fine in the night ...  My temp is now 37.1 so hoping it stay down as got bloods today to get chemo wed n thur ! 🤞 just taken steroids as have have 4x2 24 hours b4 chemo this time as it brutal they tell me ! 
whilst I’m not saying ignore advice and walk out of a n e ... sometimes if u have medical knowledge which I have ... u have do a risk assessment. For me sitting with 40 covid patients was not an option when my temp at that time had come down . Of course if it had been up still I would have stayed . I am just horrified at what I experienced but I guess that’s covid for you and the sad state of the nfection rate still out there ! 

hugs to you all ! Pray we all stay safe and get through this as swiftly as poss xxx

 

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone,

I've been taking a break for the last few days because to be honest, my mood has been really low and I haven't wanted to engage with anything. This 3rd cycle of docetaxel has hit me much harder and on day 11, I'm still feeling really tired, walking up and down the stairs is exhausting and my mouth ulcers are back. Not 15 as previously but 4 really big ones. I'm using the prescription mouth washes which help but it's usually around 4 days or so before the pain starts going out of them.

My appetite is poor and I'm finding it hard to enjoy any food at all, I fantasise about the days of eating out and enjoying delicious meals - I can't wait to tuck into a lovely meal again and really enjoy it!!

The good news is that I have an appointment for my Covid jab on Friday 5th and my next Chemo is on 11th so the timing has worked out fine.

@higgi I'm on Docetaxel, cyclophosphamide, pergeta and Herceptin. I've had 3 cycles so far and a 4th next week. I'm on the ROSCO trial and might not need any FEC treatment as my tumour has responded well. I hope you get on ok with it. The initial session over 2 days is long but my 3rd cycle was done in 6 hours total and I have 4 separate infusions with flushes in between. I hope you're feeling better now since having your vaccine.

@dipitdee Are the mouth ulcers improving? I hope so. For something so small they really are excruciatingly painful! I hope your bladder is improving too, it's not a great combination of symptoms, is it?

@Pesto Welcome to the forum. I think you will find it helpful to share any worries and concerns and other members often share tips for dealing with side-effects or just to offer support and encouragement.

To everyone else, I hope you are doing ok. Each day/week is a step nearer the end. We will get there!

 

 

 

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

Well done ladies, you're all doing so well... even if you don't feel it! 

I'm struggling with fluids this time around, finding it difficult to know what to drink and consequently not drinking enough!

I don't seem to have been classed as CEV. Letter from onc before Christmas suggested my risk was no greater than any one else's. I'm young (-ish) and otherwise healthy (-ish) (46, no other known health conditions). But this did surprise me, now more so, knowing lots of you have been asked to shield and are getting vaccines. I'm not too worried, my world is very small at the moment. But interesting to see how different parts of the country do things differently! 

Have a good week. Good luck to those with treatment and vaccines 💪

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

@higgi hope the vaccine side effects wear off quickly. I’ve just changed to the regime you are going into. My white blood cells were down on the sample they had so they just repeated them on the day of the herceptin/perjeta. Hopefully they’ll be up by then if they have dipped a bit. Be prepared to get very comfy that day. I took a book and downloaded a couple of podcasts to stave away boredom, it’s a loooong day! And thanks for the advice re: cranberry juice. I was thinking it might still be a bit acidic but diluting it is a great idea. @Pesto I also love the idea of a gin and coke! Might give that one a try. I love my gin and tonics and have a whole shelf full of lovely gins that I just haven’t had a taste for this month at all. Although hubby might get a bit sniffy about me putting coke in them!

@donkeywoman it definitely took me longer to get energy back this time. I’d say day 9 until I was back doing yoga and a decent walk. 

@Pesto hope you get news about the vaccine soon. I’m worried they don’t call me back after I said I’d prefer it next week. 🤞we all get done soon x

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi @donkeywoman @I’m not feeling great like I normally do at day 20 so taking it easy on the settee and watching out for any temp following the vaccine yday ! Feels like I just ad chemo srghhh ! 
I’m moving from EC to docetaxel perjeta and herceptin... given over 2 days wed and thurs. repeated every 3 weeks for 3 cycles . 
hope you all get vaccines soon and are ok with them !  Hoping tomorrow I’ll feel better as it’s bloods check 🙌
best wishes everyone xxx

Pesto
Member

Re: HiRe: December 2020 Chemo Starters

Good morning all.

 

I received my jab invite in Friday's post. To cut a long story short, eventually managed to book an appointment.  Great.  No.  Two and a half days of being on the phone and the computer...  appointment time not allowed -  I am not 70.  Two hours on phone this morning, finally got through to Notts County Council help line.  Yet another message...  We apologise to all those who cannot book their appointments, the incorrect letter has been sent out.  Another should arrive " Soon "  A pity because I am a non chemo week and now would have been perfect.  

 

Anyway, the sun is shining, log fire on and yet another cup of coffee.  We do have to keep our spirits up.

 

Talking of which I have found Gin and coke doesn't upset my tummy nor am I in pain aka burning when going to the loo.  The coke was tried before I changed the Gin for Vodka.  Glad I did, though I do miss the tonic.

 

This forum will be my lifesaver, it is wonderful to know I am not alone, though very sad so many of us are in a little of a mess at the moment

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Morning,  @higgi glad you have had the first jab! Hope you feel okay this morning? And good luck with change in regime, sorry,  forget what you are moving to?

@dipitdee hope improvement in mouth continues. It's grim, isn't it... so far 🤞, I've not had thrush or ulcers,  but just the vile taste and oily/dry feeling is bad enough.

Day 4 today and don't think this fatigue is lifting yet... still, I've managed breakfast,  that is something! 

Bye bye to January.. hope everyone's February starts as well as possible xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi ... hope u all managing ! 
had vaccine last nite (AZ) .. just lots of hot cold sweats in nite . That was day 19 post chemo for me .. bloods tomorrow to start new regime wed snd thurs 🙏🤪

re UTI s ... I had history of these and kidney stones so am high risk during chemo ... so what’s worked for me is drinking cranberry juice diluted with water 700 ml (1/2 n 1/2) daily then other fluids on top . Yes I do get some slight burning from time to time but then that’s my massive signal to drink MORE ! So I drink another pint and it goes . 

also mouth hygiene floss tipee brushes n mouth wash x2 daily all ok so far ! 🤞

Best wishes always big hugs 🤗 xxx

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

 

@grannyp The mouthwash has been a godsend. I don’t know now if it was thrush or mouth ulcers or just the lining of my mouth coming away, but day by day it’s definitely improving. It tastes disgusting but it’s doing the job. Hopefully as the week goes on and my immune system recovers things will continue to get better. I still have the bladder irritation but after 2 rounds of antibiotics now I’m pretty sure it’s just irritation and not a UTI. Not going away though so if anyone has any advice for things I could maybe eat or drink to ease it I’d be grateful. 
On the timing of the COVID jab, I can see that just after would be fine too, I’d just like not to have it on that 7-14 days where our immunity is lowest as surely you’re less likely to have a decent immune response and get the protection. However, if it ends up being a choice between having it then and not having it, I think my oncologists advice would be to have it as any protection for us would be better than none. 
Definitely would be nice to have an oncology only unit. Wish they would do that here.

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi @dipitdee 
How are you feeling now? Hope your mouth is improving as it did sound really awful. At least you were able to eat your soup but it would be lovely to be back to eating everything. 
It is so good that we are now all getting the call for the vaccine. I was particularly impressed with the ‘oncology patients’ only clinic that I am being sent to. I would very happily go anywhere but I am sure a lot of patients will be much more comfortable in a setting where everyone else has been shielding. 
As you say, it won’t make any real practical difference but those who are particularly worried will hopefully feel at least a little more comfortable. And I am sure people like you would love their young children to get back to nursery. The effect on the youngsters is huge and they are missing out on hugely important social development On a practical level, it would give you a much needed break!

I have to confess that whilst I do take all recommended precautions I am not over-worried about covid. I am 95% sure that I had it early on when there was no testing (my husband certainly did and I was ill at the same time but not as bad as him). There is still no definitive evidence that this protects against further infection but it is now believed that there is some immunity and this does stop me being paranoid. 
On the question of timing, as everyone has said my oncologist confirmed that next Thursday would be ideal for me as it is less than a week before my next treatment. The following Thursday will be the day after treatment-not sure about that as I don’t know how I will react to Paclitaxel but my oncologist is more than comfortable with that day as the cells won’t have dropped by then. 
Anyway hope everyone has as good a Sunday as possible and good luck for all treatments and vaccines this week. And for those dealing with side effects, hope the next few days prove easier x

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Morning @dipitdee @grannyp and all. That is indeed good news about the vaccine. My mother in law had hers yesterday,  so I think may hear soon. It's good to know that you could put it off a bit, @dipitdee , as I'm planning to do the same if they call in the next few days.

Hope everyone has a gentle Sunday. I'm still shattered so can't think I will be doing much...x

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

That’s great news @grannyp !! They really do seem to be ramping things up for CEV people now. I had a call from my GP last week offering me the vaccine on Monday. I’ve asked if I could have it closer to my next chemo (I’ll only be 10 days into this cycle on Monday and I’m feeling low as it is) so they’ve said they’ll put me back on the list for the following week. It won’t change much practically but I’ll certainly feel a little less apprehensive about going to the hospital and hopefully letting my little girl eventually go back to nursery. There were quite a few on the chemo ward last week who had had it. Hope everyone else gets their phone calls soon x

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Good evening everyone 

Bit of a shock tonight when the  ‘No Caller ID’ flashed up on my phone. I am sure we are all now familiar with knowing that this could be a hospital call but on a Saturday evening assumed it was a sales/scam call. In a previous life I would simply have ignored it but am now programmed to answer these calls. What a surprise to speak to my consultant oncologist who apologised profusely for ringing on Saturday evening but proceeded to ask if I would like to go for the vaccine on Thursday. Only one answer to that! Apparently a new vaccination clinic is being set up each Thursday specifically for oncology patients. She had been advised today and was sending off a list of her patients who are interested this evening. It is a centralised location for the county and is an hour’s drive away for me but I will be there if I get an appointment.  It may be the following week but have to wait for a call from the centre in the next couple of days. Will be pleased to have the vaccine but it is also  good to see what seems to be a really determined and organised push to get the vaccine to all the vulnerable groups. 
Hope that all of you still waiting also get a call very soon. When it comes it really does feel quite emotional x 

Susie B
Member

Re: HiRe: December 2020 Chemo Starters

Hi grannyp

Being concerned about losing your hair is not being vain. We had many discussions about this in our February 19 group. We all took photos of ourselves during and after treatment so we could look back and see how far we have come. We still take photos now on our Facebook messenger group and compare our post chemo hair and the challenges it can bring on occasion. The hardest part for wasn't only the hairloss but the fact that I could no longer colour my hair. Going grey was awful. I carried on wearing a wig until partway through my radiotherapy in November 2019. You will find as time passes some of the old you will shine through and you will find a new you too. Covid certainly doesn't help. We all felt robbed to start with last year when many of our plans were pulled from our feet, but we eventually accepted it. When you have finished treatment take things slowly. Accept that you will have down days but they will become less as time goes on.

Susie B xx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi again @donkeywoman @dipitdee and everyone else. We are all suffering in one way or another. @dipitdee the thrush sounds absolutely dreadful and I hope that you get it sorted soon. Make sure you get the right medication to clear it up. I have eaten really well so far - too well at times! - and like you I would really struggle if something like that happened. Fingers crossed that you are soon as much back to normal as possible and get rid of that delightful 3rd chemo look.

@donkeywoman you are very brave looking in the mirror. I avoid them whenever possible, only looking when I want to apply a little make up in an attempt to make my face look less dreadful! I never look at my hair without a hairband or hat. I haven't lost a boob but I have lost a nipple and only look at that when absolutely necessary. I read what I am writing and think to myself 'what a vain ......"!! and 'don't you realise that it is better to look like this and defeat the cancer?' But I also think that we have to acknowledge and accept how we feel at this point and not beat ourselves up. We are all individuals on our own individual path and no way is the right or wrong way.

@Susie B Wow! You are one of the people I really admire for being able to accept the hair loss and turn the new hair into such a positive. And I admire you even more for being able to post a picture of your hair immediately post-treatment. I am sure that your honesty in showing this will remind many of us that the hair loss is not for ever and that this too will end. However, for me the hair is too much of a huge identity loss. The months post-treatment are incredibly important to me - whilst I totally accept and understand that I will not be able to return to my pre-cancer self, my aim is to regain as much as possible, depending on covid restrictions. For me to look at that point like a 'patient' with obviously re-growing hair fills me with dread, particularly as I have been very private about my diagnosis and post-treatment I intend to tell only those who I feel comfortable telling. Again, I sound incredibly vain - I am not usually, perhaps it is an unusual side effect!! x

 

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @grannyp 

I had my 4th EC nearly two weeks ago and the fatigue definitely builds up as I have been totally shattered. I have been juicing spinach, green apple, carrot (to make it sweeter) and 1/4 lemon. If you add ice it's not so bad and it does boost you after drinking it. I did try adding ginger but it made my mouth tingle too much, Joy's of EC.

Hope you pick up before paclitaxel, I start next tuesday xx

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

@Susie B That’s the post I needed to see today. So good to see the light at the end of it all! You’re looking fab x

@donkeywoman I’ve got the antibacterial mouthwash they gave me at last session. 🤞It clears it up. Managed to make a lovely leek and potato soup today and I’ve finally found something nice I can taste! 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Looking good @Susie B ! Thanks for posting,  it's good to be reminded that we will have hair again. 

@dipitdee , that sounds miserable,  hope you've got something for the thrush and it clears up soon xx

Susie B
Member

Re: HiRe: December 2020 Chemo Starters

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Susie B
Member

Re: HiRe: December 2020 Chemo Starters

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Hi everyone 

I hope you don't mind me popping in but after reading your chat about hair loss I thought I'd post a couple of photos. Despite cold capping my hair became very thin and I had 4 bald patches and looked like this in July 2019 after 4 rounds of FEC and surgery. As previously mentioned I was on the ROSCO trial. The other photo was taken 31 Dec 2020. As you can see my previously thick short hair has all grown back. I'm growing it longer at the moment as some of my chemo curls won't lay flat so they hairdresser suggested last Sept that I grow it a bit longer. As I was TNBC I'm not on any treatments that may impact on my hair. Rest assured your hair will grow back and you will start to feel "you" when it starts to grow again soon after chemo ends. 

Susie B xx

 

 

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

Hi All,

Totally agree that recovering from 3rd treatment has been the worst so far. I’ve had the sensation of a UTI since I had my first docetaxel about a week ago. 1 round of antibiotics hasn’t cleared it although urine sample was clear. They’ve given me another round of antibiotics over the weekend to be on the safe side but now I have horrendous oral thrush that came on last night. It’s sooo painful. I’ve kept my appetite pretty well up till now and the fact I’m struggling to eat now has really got me down. 
Definitely looking a bit ‘peely wally’ now. Totally agree that chemo 3 rounds in is NOT a good look. 
Is anyone else feeling like they are never off the phone to the oncology ward? 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Morning @grannyp and everyone,  it's sleeting here and with an easterly wind, brr... I'm glad my husband is out with the donkeys and dog... and I'm tucked up in bed! Had my porridge with dried fruit and fresh kiwi 😊. Yes, I think  I'm ready for the fatigue,  but I need to guard for it making me too miserable. Small steps and all that.

That hair treatment sounds amazing, I so hope you can have it. I wouldn't have the patience,  but it does sound great. When is it booked for? 

It really is something,  how odd this can make us look. I try to avoid mirrors but occasionally I have a look, when I'm feeling up to it. One breast, just a long scar on the other side, hardly any hair, right now big red cheeks (steroids), a slightly grey tinge to my face and bags under my eyes. I was no oil painting before,  but wow... I am grateful to be doing this in winter, wrapped up in layers and hats. And lockdown kind of helps too, which feels a bit selfish...

Hope everyone has the best Saturday possible xx

 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Morning all and hope you can all have as relaxing a weekend as possible. I have been listening to - and now watching - torrential rain and strong wind - for the last couple of hours and understand it is set to continue all day. I am reluctant to move far from my bed but as my energy finally reappeared yesterday I need to make the most of it. A long walk is out of the question, so I think some yoga and ballet and some time sorting out rubbish! @donkeywoman and anyone else recovering from your 3rd cycle, be prepared for unbelievable tiredness but if it does happen have faith that it does pass. I truly looked and felt like a very sick very old person for a couple of days last week but suddenly ‘normal’ service resumes. 
In reply to your question @donkeywoman  yes the Intralace is rather like a weave. A mesh is fitted and moulded to your head shape and your remaining hair is used to help to secure this. As you can imagine this is a painstakingly delicate procedure due to the fragility of the hair. Hair extensions are then stitched directly onto the mesh. The system can be used for up to 2 years but does need regular maintenance and is also removed and re-applied every 6 months as your own hair is regrowing. Other than that it is on your head and treated like your own hair. For anyone who is interested that is the basic concept as I understand it after several phone and video consultations. I will update when I have had the procedure- if my hair plays ball and I keep enough of it! Only 10% of own hair is needed, so fingers crossed🤞
Well, let’s get through another lockdown weekend, cross off another couple of days and hope for our calls for the vaccine. Take care everyone x

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Evening all,

I've just had 3rd (of 6) TCH which went okay. They managed fine with cannula (after my failed picc line insertion on Wednesday), hopefully they will manage the last 3 too. I came home and went to bed and to sleep - felt proper woozy, but it wasn't unpleasant. The nurse warned me that people often find the fatigue worse after the 3rd treatment and another woman there today, also with Docetaxel but on her 5th, said it hit her more after numbers 3 and 4. I feel that as long as my ready for it, then I can deal with it. I've warned my husband and will just go with it. Like you @grannyp I will try to keep getting out and putting one foot in front of the other.

My haemoglobin has dropped too, so I'm already on the spinach! I don't eat meat or fish, but have been advised that eggs, cashew nuts, spinach etc all good. And because vitamin C helps you absorb the iron better, kiwi fruit are packed with it so 2 a day will do it. I'll do my best... I would like to avoid iron tablets if possible and definitely a blood transfusion, unless necessary of course.

@Georgie76  - glad you managed to have a good cry with the Macmillan Nurse - you are of course right, it doesn't change anything, but to release it, especially when you are trying to protect your family from how you feel. 

@grannyp - what is Interlace? Is it like a weave, where they attach new hair to what you have? fingers crossed you can have it and are pleased with the result

Re vaccine - having been told yesterday that I should have it any time offered, the consensus today was that it is likely to be more effective in the final week. So I'm going to go with that, once it gets offered...

Hope everyone is coping this evening x

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone and hope you are all doing ok today

@Georgie76  How I agree with you about the fatigue following EC 3. I am day 10 today and finally feel as though it is lifting. I thought it was improving somewhat but yesterday afternoon and evening were on another level! I have been walking every day as I know exercise is so important but anything else has at times been a real struggle. My bloods before the 3rd cycle showed that I was mildly anaemic and I guess that the haemoglobin level has dropped even further following treatment. My ghostly white face (now also much improved) also points to anaemia - don't you just love what this hellish treatment does to our appearance!! Just hoping that it gets back to at least the same level as last week before my first Paclitaxel. I am trying to eat as many iron rich foods as I can to try and give it as much as a boost as possible. My appetite has been huge throughout all 3 cycles and I haven't struggled with not being able to eat certain foods, so I am not limited by what I feel able to eat - although as I don't eat red meat I do have to find any alternative sources I can!

And so glad that you got to chat to someone about your hair loss @Georgie76 We all need a release sometimes and although, as you say, it doesn't change anything just opening and letting your emotions out must have helped you. Like you, I am trying to stay upbeat for my family - we currently have an adult daughter and son living with us due to various pandemic-related issues and they are struggling enough with their own issues due to the current situation. Obviously my diagnosis was a body blow to them and they are aware of my huge reluctance to have chemo, but I try to stay positive at all times. 

My concern at the moment is that my hair will all disappear in the next few days before I can get to have the Intralace done. In the last days, I have had the itching and strange feeling that occurs before hair loss first occurs and I have a huge dread that the cap didn't work at all on this last cycle and there will be an enormous shedding any day now. At the moment hair is still shedding regularly - generally lighter than at the beginning but some days more than others. 

Hope that more of us hear about the vaccine soon. Although it won't make any difference to us immediately, it really is a light at the end of the tunnel after the last year.

Have a good weekend everyone and then to another week of treatments etc. As always, each day is one step nearer x