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February 2021 Chemo Starters

hopeful1974
Member

Re: February 2021 Chemo Starters

Thanks, Angela. I’m interested as I have been told I will have a taxane (so either Docetaxel or Paclitaxel) with my Herceptin for 3 to 4 rounds and I think I’m going to push for weekly Paclitaxel if I can as it sounds more tolerable. I think I am better at managing a low level of discomfort for longer rather than peaks and troughs like I had with EC. X

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974 /Sian

Pax is weekly. It's easier on the body that way. Basically you have 3rd doses so over the 9 weeks I get 3 full doses. I'm lucky that I have cast iron guts so my EC didn't affect me that way. Hence my severe steroid munchies has me packing weight on. I lost nearly 4kg post op and got down to my preferred weight but it's had to maintain. No way is it a target weight - I'd look ill that low. Thank goodness there's an ask of government to pass a law to ignore BMI. 

Pas is a taxol chemo - no idea what that means! I understand it's always weekly. Dox is the other taxol that's every 2 or 3 weeks.

hopeful1974
Member

Re: February 2021 Chemo Starters

That is so good that you are feeling good on the Paclitaxel, Angela. Is it weekly or monthly? 

Your food sounds yummy and I think it’s better to have put a bit of weight on than to have lost it. I lost 2kg with each round of EC and am only just starting to regain that weight. My appetite went each cycle once I stopped the steroids (which I had for three days). 

I hope everyone has a lovely Saturday and that you are all feeling comfortable. Siân x

Gelbel
Member

Re: February 2021 Chemo Starters

Hello everyone,

I hope you are all OK following your latest cycles.

I'm loving Pax... so far. So much better than day 1 after EC. Virtually no side effects at all.... except waking up just gone 2 and not getting back to sleep. So I got up and did admin at just gone 5! Washing hub out to dry at 5. Thanks steroids and speaking too soon. The nurse said that she was surprised I spelt on the amount of them I had for EC. Note to self: watch what you say when there is no wood around to touch.

I did feel a bit whoozy bending over to empty the dishwasher but put that down to needing food as I was OK after breakfast - which I lasted out until just gone 7!

A packet of 12 Hula Hoops was picked up when I went to get a paper.

@Kaz11 I went in the disabled loo twice yesterday as the octopus style IV holder thingy didn't fit through the ladies door. I got a mock telling off for not plugging it in again - didn't even realise it had an electric charger! And I missed my red wee!

I'm glad the gym wig has gone down so well. Mine is my go to for non-people facing outings (like to the shops), park walks and work.

The biryani was wonderful - well more spicy chicken and rice and onions. Absolutely no problems at all. 👊
Saturday afternoon chippy tea around 3pm and it's our once a month Chinese tomorrow for tea (so much nicer delivered early on a Sunday - not so busy probably).
 
And I wonder why I've put a bit of weight on. 🐷
 
Best get that washing in as it looks like it's going to rain - or even snow.

Have a super Saturday. 🤗

Love AnGELa x
 
Kaz11
Member

Re: February 2021 Chemo Starters

@LottieLaing 

Totally with you on that!  It even turns my stomach when I iron my chemo blouse.  It goes straight back into the wardrobe so I don’t have to look at it until treatment day.  I was thinking of a ritual burning of it too when all the chemo is done however a friend said knowing my luck I would probably set fire to the house so it may end up being ritual cutting up and putting in the bin instead!

Also been nauseated after treatment thinking about what I ate in the hospital so actually took my own sandwich with me on Thursday and it seemed to help.  Not sure if it was a psychological thing and am now on weekly treatment but it hasn’t turned my stomach thinking about it this time.  Hula hoops in my online shopping order this week!

Kaz11x

LottieLaing
Member

Re: February 2021 Chemo Starters

@Kaz11  I’m doing the very same thing... I finished my EC yesterday and wore the same top for all 3 .. I really want to burn it to be honest 😂.. so may do that and have a wee dance round it in the woods next week. Xx

Teagold
Member

Re: February 2021 Chemo Starters

Hi @Kaz11 and @Gelbel 

Glad the first paclitaxels have gone smoothly so far. Mine was ok today though as usual I slept pretty much through the whole thing, probably the anti histamine. Now I’m home I feel totally wiped, definitely noticing the cumulative effects. My neutrophils still look low-ish (nobody has told me this, I’m just reading it in my book) so I’ve got jabs again this week ans I’ll be referring back to the fab list below on things to eat. Basically I think it’s protein protein protein. Not sure how much protein there is in hula hoops...

@Kaz11 I’m in the same situation as you re hair - SO thin on top it looks ridiculous and almost feels pointless to keep going with the cap but since it hasn’t really bothered me too much I’ll maybe do another week and then see. I’ve got a gym wig ready to go ans my lovely cousin sent me a suburban turban yesterday which is lovely. 

@Gelbel yes me too re sending hugs to the Queen. So sad for her. 

I’m feet up on sofa watching Prince Philip stuff on tv under a blanket, about all I can manage and I hope everyone is warm and comfy and gets a good nights sleep - @Kaz11 I’ll keep my fingers crossed for you sleep wise!

tg xxx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Gelbel 

Totally with you on the weeing front.  Hadn’t had loads to drink yesterday but as you say with all the fluids and I had 2 flushes too it’s no wonder I was constantly at the loo.  Had to get help each time as the nurse needs to keep me attached to the cold cap machine and I was also still attached to my IV so I need to reverse into the loo - it’s quite a manoeuvre let me tell you!  

Have felt reasonably ok today but am sure the low will come it’s just a matter of when.  Just have to wait and see with this drug how it affects me.  Nurses keep saying it shouldn’t be so harsh but I’ll reserve judgement until I have been through this next week.

Wearing my gym wig every day and loving it - makes me feel normal.  Didn’t actually believe at the start of all this that I would need a wig - maybe was in denial.  Thought the cold cap would work wonders but unfortunately not.  I look at pics from the end of January pre chemo when I had shoulder length hair and can’t believe the difference to now 😢.  Like you I wear my turbans around the house when I am not going out walking.  So glad I got all my head coverings and wigs sorted in advance.

Good luck with the biryani - you are a brave lady!  It’s mince and potatoes for me tonight!

Kaz11 x

 

Gelbel
Member

Re: February 2021 Chemo Starters

Well done on your 1st Pax @Kaz11. How are you feeling? Sorry to hear about your hair. 

I had my first Pax today. I had my bloods done on Tuesday so will have the wait next week. 🥱 

My appointment was 15:45. I was called at 11:30 to ask where I was- no one had told me/no letter to say it'd changed to 11:00. Thank gawd it was my pal who called as I was a bit rude about the admin. 🙊 I got there at 12:30.

I had the same 8mg steroids but....none to take home. 👊 The lovely nurse put it in so slowly too. So hopefully much less reaction all round. 🤞 I had IV Piriton that I wasn't expecting. I didn't have a sickness brick nor anything via IV. I also had Biphosphanate.

I left at 16:20.

Apart from weeing for England - all the above fluids plus 2 flushes. I felt OK - good enough to drive home. Another 👍

I do feel slightly queasy now so just dropped a Metoclopramide. Having said that I've not eaten much. I don't have anything to eat until 12pm on normal working days so quaffed a quick sarnie before I left for the appointment. My team at work were having a virtual leaving do for our head of department. I did join the chat for a while. Lucky people were all quaffing cocktails - even the girls in the USA. 😲 I shared a photo of my NHS cuppa and biscuits. 🤭

I did a food order in a rush last night as I saw Waitrose had delivery slots and I couldn't be bothered to go to Aldi... so I've a biryani. #ReachesForTheIndigestionTablets

So with you on the time Kaz. We're not far off done - 1st few days of June aren't that far away really. I will have a little break before radiotherapy - the 3 week post chemo and how appointments for the radiotherapy prep work out. We've a little week away booked to see my family and friends but staying independently from 19 June so the timing is perfect.

Welcome @Guest user!  I'm a big advocate of wigs! Scroll right down quite a bit and you'll see mine. I'm currently rocking a slightly funkier, shorter version that the nurses were admiring. I know a few other Feb ladies shared their photos. I do wear beanies in the evenings or if I'm not doing anything nor working as I do prefer the lightness on my head. 

I hope everyone else who had chemo this week is as warm and comfortable and safe as possible.🤗

I wish you all the weekend you wish yourselves. I want to give the Queen a hug, poor love. 😥 

Love AnGELa x 

Kaz11
Member

Re: February 2021 Chemo Starters

Ps I will be binning my chemo clothes as soon as my treatment is over!

Kaz11

Kaz11
Member

Re: February 2021 Chemo Starters

Good afternoon everyone 

I had my first of 9 weekly paclitaxel treatments yesterday.  It was a long day again - home at 6.  Bloods done first and then need to wait 2 hours for results.  Had IV piriton which they said would make me drowsy - it didn’t.  Thought it would help me last night too - it didn’t.  Starting to think a sledgehammer is the only thing which will give me a sound, long sleep instead of the hourly/2 hourly burst.  Anyway also got an antisickness drug beginning with R but can’t remember the name - it was IV too instead of the giant Emend capsules this time.  Actual Paclitaxel was titrated (I think that’s right) so went in slowly at first then it took another hour for it to finish.  Good news was I didn’t have much take home medication.  An anti sick if I need it and stuff for my mouth if needed too but no injections.  Will only have to take them if my cells don’t recover enough in between sessions. Cold cap then on another hour after which is getting harder to tolerate as I have so little hair left.  I am like Max Wall now with hee haw on top but still some at the sides. So that’s one down, 8 to go.  I know what you mean @Teagold like it’s never ending.  18 weeks sounded like an eternity at the beginning and I still have 8 to go if all goes to plan but am trying to see it that I am now on the downward slope of the chemo hill.  Oncologist also indicated that I will start my radiotherapy straight after chemo with no break to get it over with unless I want a break.  Likely to have 5 or 10 sessions after she has checked my pathology report again.  She also said they were all so proud of me so immediately burst into tears as soon as she left the room!

@hopeful1974 I didn’t have a choice re lumpectomy or mastectomy as I had 2 areas of concern they said so had a mastectomy on 18 December.  Re reconstruction I only had the option of an expander implant as they said I didn’t have enough excess tissue from my back/stomach to reconstruct that way.  Everyone is different but I didn’t want to wake up with nothing on one side so opted for the reconstruction/implant. It meant everything was done under one anaesthetic as I didn’t want another op either.  I was also told that it was easier to do at the time of my mastectomy as if yoh leave it until later the skin settles down and more stretching is involved getting the reconstruction later.  However that might just have been in relation to me/my skin so be guided by what your medical team is telling you and then you can decide based on all the info you have been given.  With the expander implant a port is inserted under the skin and fluid is injected in via there to inflate the breast.  It is just like getting an injection and I had 4 inflations prior to the start of chemo. It has to stop while getting treatment but can resume later.  A general anaesthetic is required to remove the port once all the inflations are complete but I have been told it is only a 20 minute procedure.

Take care everyone.

Kaz11x

hopeful1974
Member

Re: February 2021 Chemo Starters

So, I can have a lumpectomy or a mastectomy. I don’t like having the choice! I can have immediate or delayed reconstruction.

hopeful1974
Member

Re: February 2021 Chemo Starters

#8 - wow. That’s a real achievement. I know what you mean about it seeming never ending. My treatment is probably going to go on until November including a few Herceptin treatments on their own, which at present seems a long way off. I am trying to take it week by week and not focus on the end just yet. It might change anyway! Keep going, Tg. You’re doing really well. Xxx

 

Teagold
Member

Re: February 2021 Chemo Starters

Morning ladies

@hopeful1974 hope your appointment goes ok today 🤞 

Just got to hosp ready for #8 today (fingers crossed bloods all ok as neutrophils v low last week but have been injecting all this week). I’m starting to feel like this will never end! Can’t imagine life ever not consisting of hospital appointments and feeling knackered etc.
I just realised this morning that I wear pretty much the same clothes every week when I come in for my treatments and I wonder whether I’ll ever want to wear them again after this. Can’t remember who said they were going to burn all theirs but the same thought went through my mind this morning. 
hope everyone is as ok as possible andy anyone else having treatment or appointments today hope all goes smoothly

tg xxx

hopeful1974
Member

Re: February 2021 Chemo Starters

Yes, it is so good to feel like you are not alone. Even when my husband and children are around, it can feel very lonely as I have to put a brave face on for them.

I’m off to hospital now to meet my surgeon who will tell me the date of my surgery and all the details. I will be restarting chemo plus Herceptin after the op. Hope everyone has a good day. Xxx

katiem
Member

Re: February 2021 Chemo Starters

Thank you for the lovely welcome,

It has been great to read all your posts, as terrible as it is that we are all going through this, selfishly, it is heartening to know we are not alone! my family have been so amazing but nobody can really understand until they have experienced the overwhelming nature of our situation. My poor husband keeps telling me it doesn't bother him that I'm losing my hair, I have to take deep breaths to stop myself screaming "But it bothers me!!!!!". At the moment I resemble something like a cross between Gollum and a Gremlin! In the beginning I envisaged my self, looking really cool, rocking the scarves and turban look.......the reality is so different! I am actually considering a wig now!

I had my third cycle of EC last week and agree with a lot of you that the side effects are cumulative. I have one more this month and then on to the weekly one, (forget what its called) which I am really hoping is kinder!

All your positivity and endurance is inspiring!

Katiem

Teagold
Member

Re: February 2021 Chemo Starters

Hi Alice/ @Leftygurl  - so pleased to hear it’s done and you’re home but crikey what a drama even on the day! Well done for having a stern word with the doc about all the mix ups - I probably would’ve bottled it and then been cross with myself for not saying anything. Also seems unfair that you were put in position of making that decision about the wound during the actual procedure - you really have been through it with this whole episode and I really hope that it’s not too painful now and that everything starts to improve. Must be so nice to be tucked up in your own bed again after this horrific week. Rest well and big hugs - eat lots of hula hoops and I will do the same in solidarity!! 

Hope everyone doing ok - I’m really hoping my carboplatin hangover recedes enough today to be a bit more active, I have basically been a total sloth all week. The carboplatin really knocks me sideways but tomorrow I’m back to a single shot of paclitaxel which is easier all round. 

tg xxx

Leftygurl
Member

Re: February 2021 Chemo Starters

Thanks everyone, so update.

The Radiologist removed the portacath yesterday although there was a lot of confusion between the staff yesterday morning on the ward as the Oncology doc was saying they have been unable to book me in and then the next minute my nurse popped in and said don’t worry you are booked in, the Doc then put his head round the door and apologised saying he didn’t realise that the ward staff had already arranged it! I went through so much stress in that ten minutes that an HCA was taking my blood pressure at that particular moment and it had gone sky high compared to earlier! So, I said to the Doc very sarcastically “ don’t you guys talk to each other? And don’t you look at patients notes, I thought that this is standard practice “  as you can imagine I was fuming! My nurse wanted to know what he said to me and although she didn’t comment I could tell by her face that something had gone on 🙄

The procedure itself was so painless I couldn’t believe it compared to the installation although the Radiologist said the tissue underneath where the portacath laid does not look healthy and that is where the infection is so the Radiologist asked me what I wanted him to do, whether to close the wound and risk any residual infection not being able to drain risking more intervention but no scar or leave the wound open so it can drain but more risk of a scar? What a dilemma and a difficult decision that I had to make while i was laying there!! After much discussion I opted for leaving it open with the option of plastic surgery in the future if the scar is horrific. The radiologist once a dressing was on said that if it was him in the same situation that I’d made the correct decision so that was a relief 😊

Im so glad to be home back in my own bed typing this. If someone last Tuesday had of said I was going to spend a week in hospital I wouldn’t have believed them!

So the rest of the week off now with more oral antibiotics to take and strict instructions to take it easy from the lovely nurses at the Macmillan ward in Medway hospital, they really were amazing, always professional but incredibly caring and supportive, even in the middle of the night when I broke down 😞 and I can’t thank them enough 🙏🏾

Btw @Teagold yes!!! Hula hoops, I can’t get enough of them after chemo cycles either lol

and welcome to @katiem  too, hope you’re doing ok today 😊

 
Alice xx

 

 

Teagold
Member

Re: February 2021 Chemo Starters

Oh @Leftygurl so sorry to hear about this, must’ve been really frightening for you and your family not to mention horrible to be so poorly. I really hope you were able to get it removed today and that you will be feeling better and stronger very soon. Big big hugs to you. 
@katiem - hello to you and welcome to this lovely group which definitely keeps me sane, how are you doing with treatment so far?

Hope everyone else doing ok - I’m on exactly the same carboplatin side effect schedule as I was three weeks ago and basically feeling that revolting steroid “hungover”, twitchy, jangly-headed, mouth like I've chewed through electrical wires etc etc etc - but all exactly as anticipated and easier to manage this time as I’m getting used to it. New favourite anti-nausea snacks: hula hoops - can’t get enough of ‘em! I reckon I could get through an entire 12 x multipack in one sitting. 
Big hugs Tg xxx 

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @Leftygurl 

Jeez that’s horrendous what you have had to go through.  Hope it is removed today as planned and you start to feel better as a result.  I know you had been counting the days to get it removed prior to this so hopefully knowing that it is gone will make you feel better in yourself.  Sending you a big hug.  Take care.

Kaz11 x

Rainbow70
Member

Re: February 2021 Chemo Starters

hi @Leftygurl so very sorry to hear that you had to be admitted into hospital. I hope you are starting to feel better after the iv antibiotics and hopefully get discharged soon so you can be home with your family 💕I hope the line has been removed today as planned 🤞. Thinking of you and sending you a virtual hug .

xx🌈

Gelbel
Member

Re: February 2021 Chemo Starters

Blimey @Leftygurl that sounds horrific. Such a pity they didn't listen to your concerns before. Glad to hear you are on the mend and the blooming thing is coming out. Wishing you a full and fast recovery from it all. x

 

hopeful1974
Member

Re: February 2021 Chemo Starters

Oh bless you! I am glad to hear that they have got to the bottom of the problem but so sorry that you have had to go through all of this. Sending you huge hugs and wishing you a full and speedy recovery from it all. Siân xxx

Leftygurl
Member

Re: February 2021 Chemo Starters

Hi everyone,

So.....I’ve had quite a week.

Last Monday after my third chemo cycle on the 25th March I had a really bad headache that no painkiller would touch and during Monday night had a massive night sweat (which was disgusting ) headache all day Tuesday then Wednesday early morning woke up feeling terrible with a raging temperature. Phoned my emergency chemo number and was told to go straight to A&E as it was only 6am.

Spent most of the day there and to my amazement was admitted!

I was so shocked but as the Doc said we need to observe you for 24-48 hrs and find out what’s causing this. 
tbh I’d didn’t take them long to work out using numerous blood tests and a swab from the incision point where the portacath went in that this was the cause, no big surprise to me as I have saying this for the previous two weeks as it’s still swollen/hard and red and bruised on the surface.

They started me on two types of IV antibiotics and then after 3 nights on one ward was transferred to the specialist Macmillan cancer ward which was a lovely place, so clean & modern with my own en-suite room. I’ve been neutropenic 3 times and it was only yesterday I was told I’m healthy enough that they can remove the portacath today!!

I am just sooo relieved that it’s going to come out and just hope beyond hope that I don’t have the same traumatic experience as I had when it was installed.

I don’t care that I missed Easter but I do really care that I didn’t get to spend any time with my family and we have all missed each other so badly.

Keep fighting everyone!

xxxxxx

 

 

hopeful1974
Member

Re: February 2021 Chemo Starters

I hope your vaccine goes well, Linda. I had my second one on Saturday and felt fine. I had a very slight temperature on the day but very low-grade (37.4 was the highest it went). Otherwise, I felt fine. I hope your third EC goes well. Xx

hopeful1974
Member

Re: February 2021 Chemo Starters

Dear Katiem,

 

Lovely to meet you. I started chemo in Feb. I did three EC chemos and am now waiting for my surgery (meeting on Friday to tell me more). I will then have three more chemos with Herceptin and then 4-5 more Herceptin on their own after that. I think I should be finished by about end of October. It seems a long road ahead but I am trying to just take it week bu week and sometimes day by day. I have found great comfort in coming on here. As you say, it can be very lonely going through this and because of Covid there are not the normal chances to meet with others in person who are going through the same thing. I hope you feel that this is a place where you can share what you would like to. Siân xx

LottieLaing
Member

Re: February 2021 Chemo Starters

Hi @katiem I started my chemo 26th Feb too. So approaching my 3 rd EC ... should be Friday but I get my Covid vaccine on Thursday late afternoon and chemo 9am Friday so I will see how I feel after it and might need to postpone chemo if I have a temp or don’t feel great ... I hope your first chemo went ok for you. 

linda 😊

Kaz11
Member

Re: February 2021 Chemo Starters

Welcome @katiem 

As you say it can be a very lonely place and as orhers have said unfortunately it is not a club that any of us would have wished to join.  However speaking for myself it has been great chatting to all the lovely ladies on this forum and getting feedback and support.  We are all here for each other during the most difficult of times.  Not only are we dealing with BC but are having to deal with it during a pandemic too.

Sending big hugs

Kaz11 x

katiem
Member

Re: February 2021 Chemo Starters

Hi Ladies,

I started my Chemo in Feb but have only just come across this forum! I’m looking forward to chatting to you! It can be a very lonely place can’t it? 
love

Katiem

Gelbel
Member

Re: February 2021 Chemo Starters

Hello everyone

I hope you are all feeling OK (or as well as you can be) and had a lovely, if cold, Easter weekend.

I had my pre-Pax check-up earlier. Dr listened about my steroid reaction and said they were not acceptable. #Result However, as Pax is new to me he will prescribe the full dose for my first session on Friday and then look to reduce depending on how I am with the chemo. He assured me it will be much less than for the EC and the amount I take at home will be too. Again no injections nor Priton (thank god) or other stuff to administer myself nor be given on the day other than the huge anti-nausea tablet 30-60 minutes before the chemo's administered.

He was lovely in that he said that I was doing very well and he was looking at my hair to work out if it was mine or a wig. Bless him - I saved his embarrassment and said it was a wig.

We did talk about a Picc - we'll see how my veins cope. And the good news is, I will have telephone check-ups each week rather than having to go hospital. I will have face to face appointments after the 3rd and 6th weekly cycles. It does mean my bloods will have to be done before each of the other cycles so some hanging around before sitting in the chair.

I am going to have my 2nd biphosphonate this cycle too. I did question it and he understood my reasoning but as I'd had no side effects, I'll have it.

There was a hell of a queue for bloods this afternoon - catching up on the Bank Holiday I hope. My pal said that it was madness today.

So Friday. I so hope I'm OK on Pax - dreading feeling pants until June. I won't - be positive!

Love and hugs.🤗
AnGELA x

  

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974 

Totally get where you are coming from re “limbo”.  I hope you hear about your op soon.  It just adds to the anxiety level doesn’t it.

Re appetite I have been eating chocolate like it is going out of fashion! However like you my eating habits now seem to be different.  Can’t take spicy foods due to indigestion so everything a bit plain at the moment.  Also wondering if I should take my own lunch to the hospital on Thursday as after each treatment the thought of what I ate in the hospital makes me nauseous.  However on the flipside it may put me off what I take with me ftom home too so will need to have a good think about it.

As you say hospital visits are reassuring as I get to speak to the nurses and get a bit of a boost from them re how I am doing.  Think the oncologist also going to speak to me on Thursday so will ser how that goes.

Take care and hope everyone has a good day.

Kaz11x

hopeful1974
Member

Re: February 2021 Chemo Starters

Hi again Kaz,

I totally know what you mean about the lack of structure. I am in limbo at the moment waiting for news about my operation and I’m finding that quite hard. On the plus side, my appetite has come back so I am enjoying being able to eat semi-normally, although I have to say I prefer completely different foods now to before I started chemo. 

I found the hospital visits were good for being able to talk to people, whether it be nurses or other patients. 

That is great that you are nearly halfway. It will be very good psychologically I am sure. 

I you and whoever else reads this has a good day. Xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974 

Thanks for your reply.  It’s reassuring to know it’s not just me feeling the cumulative effects and like you it seems to have taken me longer to recover each cycle.  Am so used to doing things at 100 miles an hour pre BC it’s hard not being able to.  Housework is about the only thing I can do as I am not currently working but the routine gets quite monotonous.  As you say I need to listen to my body and give in and rest when I need to.  Has just felt strange this cycle as I have had to take more rests than I did in the better weeks of cycle 1 and 2.

I have also spoken to work about doing one day a week doing things that are not time sensitive so I am not under pressure.  I feel like I need something else to focus on other than BC and treatment.  I will then have a bit more of a routine although the weekly paclitaxel cycles starting tomorrow will give me that too.  Sad day when hospital visits will be my main weekly outing! 
Hope everyone is as ok as they can be this week.  As you say @hopeful1974 each completed cycle is another one off the list.  Tomorrow is week 9 of chemo out of 18 for me provided my bloods are ok so looking at it I am now at the top of the hill heading down the slope which is a good thing.

Take care everyone 

Kaz11 x

hopeful1974
Member

Re: February 2021 Chemo Starters

Dear Kaz,

 

I definitely found that I was able to do progressively less during my better week with each cycle. I’ve had to really learn to listen to my body and get used to putting my feet up. I also find it hard when my default is being really busy, doing housework, cooking etc. After the third round, it took me 9 days to recover, whereas after the first cycle I did a long walk on day 4! 

I am aware that different chemo drugs hit you differently so when I am on my next ones (a taxane plus Herceptin), I am expecting different side effects but probably still lots of tiredness and rest needed. 

Keep going everyone. We are doing so well getting through this and each chemo is one we won’t have to do again! Xx

Kaz11
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974 @Rainbow70 

Thought I would share my experience with the injections.  My chemo is a Thursday and after each of my 3 EC cycles I had to take the injections for 7 days starting on the Saturday after my treatment on the Thursday.  I found I really had to psyche myself up to do them even although it only took seconds to do.  I took mine around lunchtime each day.  The first time I did it I was planning to inject myself mid afternoon (can’t actually think of the logic behind that now) but then on the first day I felt like I was putting off the inevitable and thinking too much about it so did it around 1.15pm and then had to stick to that as I was told to inject at the same time each day.  I too had pains in my back and chest on the last injection day of my first EC cycle.  Was so worried I phoned the chemo team who told me the same that it was the cells reproducing and being stored in my bone marrow.  I was told there is an area like this in the chest which explained the pain but at the time I was worrying it was my heart which in turn led to more anxiety!  I didn’t have the same issues in my second or third cycle but have found my joints aching more particularly in my legs.  As I am now going through menopause though it is hard to know if it’s a chemo side effect or a menopause issue.  I know some of the ladies on this forum have not had to take the injections all the time.  I was just given them at the hospital and told I would need to take them so I don’t know if this means my cell count was low in the first place but it wasn’t an option for me not to have them.

On my better week last week I was able to go out walking more however not sure if it’s because of that or the cumulative effect of the chemo but I have felt generally more tired this time round on my better weeks.  Maybe I am just kidding myself on that on the better weeks I should feel “normal” and have maybe been doing too much.  My coping mechanism has always been to keep busy but perhaps cleaning all the skirting boards was a step too far! I suppose I need to remember that I am going through treatment so my energy levels won’t be as they were pre chemo but it makes me feel pretty rubbish when I get the energy slump as it takes me back to the week following chemo when I have no energy at all.

Kaz11xx

hopeful1974
Member

Re: February 2021 Chemo Starters

I did them at 11am, so that they wouldn’t interrupt my sleep. Xx

Rainbow70
Member

Re: February 2021 Chemo Starters

Hi @hopeful1974  your right it’s so hard when we are managing side effects also from  the chemo . I feel side  effects are worsening  due to accumulation of chemo / injections . I’m glad you have felt better these last few days.  Sorry you had to have the injections for 7 days too. What time of the day did you do your injections please ? 
Sending love xx🌈

 

hopeful1974
Member

Re: February 2021 Chemo Starters

Dear Rainbow70,

 

I was given filgrastim injections for 7 days starting on day 3 of each cycle of EC. The first cycle they didn’t seem to affect me until day 7 when I had really weird chest and back pains, which the nurse practitioner told me were my bone marrow making the white blood cells. I was able to take paracetamol to help and it cleared in less than a day. The other cycles, I had diarrhoea after the nausea subsided and never felt better until I had stopped the injections. This could have just been a coincidence. It’s so hard to tell when you are experiencing side effects from the chemo too. I definitely had nausea and diarrhoea for longer during my third cycle. The effects seem to have been cumulative for me. This then all combined with anxiety symptoms for me which I am now treating with antidepressants. I have been feeling better for the last few days, so am very hopeful they will do the trick. 

I hope you feel better soon. I decided to stick with the injections as I thought it was better not to get an infection and just took ibuprofen or paracetamol to help when I felt bad. Xx

Rainbow70
Member

Re: February 2021 Chemo Starters

Hello everyone and hope you are all managing to have a lovely Easter Weekend 🌼

Just  wondered how you all are when you start filgrastim injections . I had treatment last Monday felt like I was going in the right direction until I started injection Friday night . Since then every day felt achy / headaches/ nauseous/ bad tempered and not sleeping well at all . These symptoms seem to have appeared on the Saturday after starting injections last 3 cycles , I never seem to turn a corner until I finish the five day course.  I usually have injection on a night just wondered when any of you lovely ladies have yours ? I’m seriously considering not having It tonight. I saw the list of foods @CrazyCatLady @kindly placed on the group which can help raise neutrophils. So going to stock up also need to get some of these tuc biscuits . Thank goodness for curry pot noodles too 😋 .

good luck to all having treatment this week will be thinking of you 💕

xx🌈

 

Gelbel
Member

Re: February 2021 Chemo Starters

Hi @CrazyCatLady / Sam. I ordered knitted knockers as soon as I knew I was having a mastectomy! The Birmingham branch are (were in December) still fulfilling - go to each individual branch to check. I got a swim scrunch while I was at it.

They, like softies just aren't heavy enough to stop my bras riding up. I brought a big boob booster/fillet thing. That's lighter, yet still not heavy enough. I think it'll be better than the scrunchie when I get back swimming. I can't wait.

I love pickled beetroot and hate fresh- tastes like mud. I manage 2.5ish most days and can do 3l to flush the steroids out. For all the good it does. 🙄

About to stink the house out with a nice bit of smoked haddock. I might kedgeree mine - I've always got some of those Merchant flavoured rice packets in, bound to be an Indian one lurking around. 

Take care. 🤗

Love AnGELa x

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi @Gelbel - so far so good on the new anti-sickness tablets and yes, I get that hungry/nauseous feeling so rather than a tablet I eat something.  And yes to Ritz Cheese crackers....with a dip or cream cheese with jalapenos.  I'm terrible at getting my 3lts in a day but probably do a good 2ltrs when I add in my 2 large morning coffees!  

Ended up avoiding the pasty as, like I said, don't normally like them so not sure why I would want to eat something I know I don't like lol 🙂  Still never, ever eating cottage cheese ever again after my mum force fed it us as kids with our summer salads...oh and beetroot too yuk!  Least now I can avoid the beets due to the allergies lol 🙂

Glad to hear you have a good week off and well done you on venturing out to give a presentation!  There's no way I could do that at the moment....I'd have been a sweating wreak!  

Have you checked out the Knitted Knockers site yet...they are free and you can get to your correct size and preferred weight, and they also do swimming ones which are filled with shower scrunchies so they don't get water logged and are easy to try.  Not sure if they're still fulfilling orders thought as their site is saying orders closed but that was back in Nov 2020 (https://www.knittedknockersuk.com/).  Although their Facebook page looks to be open for business/orders (https://www.facebook.com/knittedknockersuk/).

Take care my dear xx

Love - Sam x

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Hi there @Teagold - think my 'super admin' head must still be alive in some shape or form lol.  If it's not written down I've now hope and still have the habit of note taking after spending years having to do verbatim management minutes 🙂  Guess it's not a bad skill to have...they always used to be astounded that I could type as they talked and got everything covered.

Sounds like they are taking good care of you at your unit...even if you do feel light a scatty brained school kid lol 🙂  It's just the good old chemo brain doing its stuff xx

As for protein helping with neutrophils I think it was just something I heard or read about...but did find this which pretty much sums up my whole diet as carbs, protein and dairy are about the only things I can eat due to my allergies. 

Eating foods rich in B-12 may help improve low neutrophil blood levels.
...
Examples of foods rich in vitamin B-12 include:
  1. eggs.
  2. milk and other dairy products.
  3. meat.
  4. fish.
  5. poultry.
  6. many fortified breakfast cereals and bread products.
  7. fortified nutritional yeast products.

I really am allergic to ALL the healthy stuff....gimme a jacket spud topped with cheese along with a yummy steak and sour cream or a lovely chip shop supper and I'm a well-happy bunny 😃

Sun came out a bit here although still rather chilly with the wind blowing, so managed a little walk around the block.  So already up to 4,700 steps for today and may do another jaunt out later as 'roid head not letting me get any naps in yet (despite trying).

Hope you manage to get a good rest though xx

Love - Sam xx

Gelbel
Member

Re: February 2021 Chemo Starters

Hi everyone,

I hope everyone who had treatment this week or yesterday is feeling comfortable and as side effect free as possible. 🤞 I hope your new anti-nauseas work @CrazyCatLady 

Mmm Cornish pasties. I'd love one but I don't buy pastry goods as it's the one thing that upsets hubby's Crohn's. I had a Greggs bacon roll and coffee for breakfast at one of my M62 services meets. I picked up a reduced of M&S Extremely Chocolatey hot x buns. So glad they were reduced. Yuk - too sweet and sickly and sticky.

I buy those salted or rosemary crackers that Aldi do for a salty hit. I found some Ritz biscuits in one supermarket. Can't remember which one I'm afraid. They come in useful, though they are too moreish. 🐷

I've had a very lazy, feeling well, week off work. Does anyone find when they are hungry they get a blugh feeling in the tummy? Once I eat, that feeling goes. It's not a hungry feeling but a toned down, could be a 'slightly nauseous, if I think about it' feeling. Weird.

I went out, out yesterday evening. Even put low heels on. 😲 Me and 47 (extremely fit young) men in a room. 😛 And I had to present 1st. Nice... I'd been last on the agenda. It was only for a few minutes though.
 
I was dead nervous as it was the 1st time going out and being in one place since my Mx or wigged up for any amount of time without a wing (wo)man to back me up or to a safe place like hospital. At one stage I was convinced my wig was falling off... it wasn't obvs. Bit like dreaming you are naked in front of a crowd. 😰
 
It did get me thinking - my prosthetic is so heavy, I'm going to have a think about a recon. I'll end up with a bad back at this rate. Not going to waste any brain energy on it until the autumn though and if I do might aim for next summer. We'll see.
 
I hope you all have relaxing weekends. 🤗 Stay warm! It's Baltic here.
 
Love AnGELa x
Teagold
Member

Re: February 2021 Chemo Starters

@CrazyCatLady / Sam

your post deserves a 👏👏👏 for replying to everyone and making notes - I’ve often thought I should do that so I can remember everyone’s real name vs post name and who’s at what stage etc but I keep not getting round to it!

On the story of leaving hospital with my port needle hanging out of my chest (😳), when I turned up yesterday the nurse gave me a bay right next to the nurse’s desk so that she could ”keep an eye on me this time”. So it’s just like being back at school and right under the teachers nose. I still managed to nearly shoot off without collecting my chemo book - doh! I’m getting scattier and scattier.

Congrats to you Sam on hitting the halfway point too. Was interested in what you said about neutrophils and protein - does it help? Mine were low yesterday, still ok for treatment and I’ve got the injections this week but happy to try anything extra to boost them.

Spent most of the morning dozing on sofa, definitely a low energy day so just getting as much rest as possible. Hope everyone else is having a good/relaxing day.

tg xxx 

 

CrazyCatLady
Member

Re: February 2021 Chemo Starters

Good morning all

I too have just hit the halfway mark (3/6 yesterday)!  So if all goes to time, last one in 63 days yay!!  It does definitely feel like the downhill slope now.  Also good news again for me this week as still managed to avoided the filgrastim jabs (neutrophils actually went up a bit....phew!).  So guess keeping up on my proteins is helping this along so fridge/freezer getting stocked up with steaks and chicken again this week 🙂

Apologies in advance, but on the lovely steroid buzz this morning so will be a long rambling post (so far 4 x dex with another 4 at lunchtime) plus 1 each of Loratadine (minor hives breakout as had 'naughty' food last night as was starving hungy after chemo - note to self, chicken curry is a no-go food!), co-trimaxade, ondransatron (new anti-emitic) and 1 Lansoprazole.  Nausea seems to be under control but chemo trots yesterday evening hence also had imoduim before bed last night and popped a Nytol to see if it would allay the steroid wakefulness.

Apparently had 8 hrs sleep....but only 2.4 of deep sleep and woke up 7 times in night before giving up and rising at 6am.  Will keep trying with the Nytol though.  Not sure I'm a candidate for the Calm apps though as listening to rain will only make me need the loo more lol!  Also himself's snoring doesn't help much!

I've been reading through all the posts I've missed so again apologies if I miss anyone but here goes with my replies (have to get my notebook out to do a list lol):

@hopeful1974 Sian - had my onco visit on Tues and plan looks like will do review now after cycle 4 around end April/early May.  But had to actually point him to where my right lump was so looks like shrinking even after only 2 cycles!  Still nothing palpable on the left one though so no idea how this one is doing! So it's the waiting game now until I've got one more cycle under my belt.  Also will be due my heart monitoring and poss another breast MRI (but said may wait till I've finished all chemo before doing the breast one).  Good to hear you managed a good sleep last Friday - takes me until at least the end of 2nd week after to get caught up.

@LottieLaing - Linda - yep totally agree ref sleep issues and hope you got a good walk out with hubby and dogs last weekend (before weather went downhill mid week!).  I broke shielding on Weds (only 1 day early) but weather was good so did garden visits to see my mum and then on to see my dad and it was so good to sit outside in the sunshine and have a good old natter with everyone.  Even managed 2 hours of visiting without needing the loo....always a plus point!

@Teagold oh so sorry you got the Palb2 news but looks like you are dealing with it really well.  Sorry but you did make me chuckle about leaving the unit with a needle sticking out of your chest....I just turn up for appointments a day early (for my first breast MRI lol).  Good luck with starting your EC but like me, you should be ending chemo by June so just in time for some lovely summer weather (hopefully).  

I too am totally off the choccies...so none for me just yet (can manage a nibble or two in week pre-chemo though so any I've got will wait till then)

@ktruffin thanks for the Penny B info was really useful so reviewing this quite regularly!

@Kaz11 yay to halfway point for you too and hoping you are managing to get some better sleep now.  And good luck with your weekly pax.

@Gelbel - Angela - you also made me chuckle with you trying to have warm pineapple juice with raw egg (ugh!) but it would have been a good protein drink lol 🙂  Hope you get sorted out with your steroids too....I'm on a super high dose of 8 tablets x 3 days but they do seem to manage my sickness for these days, it's just as soon as I'm off them the old anti-emetics didn't cut it, hence now trying out the ondransetron and so far so good as only need 2 per day of these (but it is only day 2 as at today).  Hope you do get to see a 'dishy doc'....no luck for me so far on that score haha 😂  Oh and good luck to you too for starting weekly pax.

@Linda1967 - so get you about the 'roids buzz...on it now, can you tell lol?? Good luck for your THP - agree with others that the H&P seem to be good ref SEs...just the taxol/taxene regime seem to make us suffer but at least we know there's and end point to it.

@Leftygurl - good luck for your port removal bet you'll be so glad when it's gone.  Glad I opted for PICC line as it's been so good for me so far and not had any issues ref clots or line movement.  Hope you're feeling better after your last cycle too x

@Rainbow70 - glad to hear you've had your last EC and good luck for the next sessions - nearly there x 

Finally, for those who've mentioned about the various body hair issues....my legs look like I'm morphing into a yeti but daren't shave them so resorting to tweasering out the longer more noticable ones.  Lady garden is still fully intact apart from a central bald spot....a reverse Brazillian anyone?  And underarm hair has been shedding but still the odd rogue one left so tweasering these too.  Still holding on to lashes and brows although thinning a bit, but been told that as I'm on docetaxel likelihood is they'll fall around 6 weeks after last chemo....oh joy!  

OK so now off for my first nap of the day but may venture out shopping later as really fancying a Cornish Pasty (which is odd as I don't normally like them!)  I blame all the food adverts and just go, oh really want that now....well that and the steroids haha xx

Hope you all have as good as day as you can and well done to all of you who've got to the halfway stage...we're all getting there, slowly but surely xx

Love to you all - Sam xx

 

Kaz11
Member

Re: February 2021 Chemo Starters

Morning everyone 

I highly recommend the Tuc biscuits.  I had not eaten them since I was a child but loving them now.  I put philadelphia cheese on mine and have them for lunch or a snack.  I also put grapes on top of the cheese.  A nurse friend recommended them to me as the saltiness encourages me to drink more fluid rather than trying to force another glass of water down without eating anything.  The grapes work for me to keep certain things moving!  Used to love spaghetti hoops on toast as not a baked beans fan so will add them to this week’s shopping too.  I am always looking for something simple like that post treatment when my appetite is shot.  Not sure if it will be the same after my paclitaxel on Thursday.  Feeling apprehensive about what joys this treatment is going to bring to the party.

Glad you like your gym wig @Teagold.  I love mine and an wearing it every day.  I got the mid length praline mix and tie it back in a pony tail as advertised on the site.  It’s a bit longer than my original hair but feel more like me when it’s on.  Can see me wearing it more than my “dress” wig.  It feels secure with the band at the front and the velcro adjustment at the back.  Mixing it up also with different coloured headbands over the top.  I can’t remember now who recommended the wig so apologies (chemo fog brain!) but can’t thank you enough.  It’s given me some confidence back.

Happy Easter weekend everyone.  I’m definitely going to eat chocolate while I still have the notion.  First creme egg of the year literally inhaled yesterday!

Kaz11x

hopeful1974
Member

Re: February 2021 Chemo Starters

Wishing you all the best for the next days. I hope you find the right foods to spark your appetite at the right time. A friend made me some focaccia bread with olives and sundried tomatoes and it has been great when I’ve not fancied other things. I have been having Jane Clarke Nourish drinks to supplement my food intake as they contain quite a lot of calories and I’m trying to at least not lose any more weight. Although my last chemo was three weeks ago yesterday, my appetite has not really returned properly. I think it is mainly due to the antidepressants I have started this week. It’s annoying as I feel like that has set me back a bit but do see that long term they should help me get through the rest of my treatment. After surgery, I will have three more chemo sessions with Herceptin plus 4-5 Herceptin sessions after that so I need to feel good about this for a while yet! 

I hope everyone has a restful weekend. Xx

Teagold
Member

Re: February 2021 Chemo Starters

Yikes - obviously that should have been “hope it does NOT clobber me as badly as last time” - don’t want to tempt the side effect demons by posting the wrong thing!!

Teagold
Member

Re: February 2021 Chemo Starters

Morning ladies,

Well I had my treatment yesterday due to bank hol so now have woken up convinced it’s Saturday. Also, steroid buzz had me up late night online shopping buying a juicer - not really sure why or where that came from!

Did any other Friday ladies have to go in yesterday? Perhaps for those with three week cycles the bank hol didn’t clash - but anyway, hope everyone is doing ok today. Yesterday was my carboplatin as well as paclitaxel so I’m sticking with the anti nausea meds and hoping it does clobber me as badly as last time.

Getting into quite a bad habit of eavesdropping the dietitian as she goes round talking to other patients about what suggestions for what to eat and how to manage nausea. Last time she was chatting to someone about tuc biscuits and I thought fab idea and got four packets on way home. Yesterday she was suggested Heinz spaghetti on toast and I started rumbling with hunger (rare) so immediately added it to my next online shop. 
Oh and got my gym n swig wig yesterday - I LOVE it, and miles cheaper than the others I’ve been looking at. Thanks everyone for that suggestion. I got the smooth bob style but v tempted to get a wavy one too or a hat with hair thingy.

Right, tea and telly...

hugs to everyone for a restful Easter weekend and if - unlike me - you still have a taste for chocolate, hope there’s plenty around!

tg xxx 

Teagold
Member

Re: February 2021 Chemo Starters

I’m chuckling at the hair conversation - same here re eyebrows, they seem to be sprouting in all directions but I can’t bring myself to pluck as I’m taking the view that any new hair growing is good. I took a photo of the top of my head today and my goodness I look like I’m auditioning for a part in Name of the Rose - quite a pronounced bald spot right on top, so had to be careful in the sun today so as not to have a glowing red burnt patch. 
@Rainbow70 - I think I was referred for the gene tests by my surgeon but I’m guessing it was all agreed by the multi disciplinary team. I got the impression everyone thought it most likely to be negative because I didn’t have a particularly “strong” family history, so I’m not sure what made me a candidate for it - maybe my surgeon does it routinely, I’ll ask next time. 
Ordered my gym and swim wig today so excited about getting that to cover up my bald patch...

tg xxx