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October 2021 Chemo Starters

339 REPLIES 339
LMitchell
Member

Re: October 2021 Chemo Starters

hello folks.

I have 3/6 EC this Friday. the second dose was 20% reduced as they felt my side effects were too severe after the first dose. must say got off lightly this time round, was up and about for first two days, then bed for 5 and then up and about again so really pleased. had bloods yesterday and mentioned a pain in my arm, similar to cording pain, sent me for a scan and I have a thrombosis, only small. so on anti coags too, but not in the PICC line vein so can carry on using the PICC, which is a relief as my veins are a pain in the bum and shrivel up whenever a nurse comes near. 

hang on in there those of you swapping to a near drug. you are all so great at sharing your experience so lean on each other and you will get through - someone will always have an answer. Keep going,.

hugs

Deep Joy
Member

Re: October 2021 Chemo Starters

Hi everyone,

Just checking in as I also had my first of 9 weekly Paclitaxels yesterday. Just read Lou's post and my experience was pretty similar (apart from the Herceptin as I'm Her2-). I was given premeds of steroids and piriton through my line - although no anti-nausea which was a bit scary for me as I have a major phobia of vomiting. Then a 15 minute wait before the Pac infusion which took an hour. Thankfully no reactions.

I was then sent home with anti-nausea meds and some ibuprofen - for possible muscle/bone aches apparently. It's amazing how different various trusts are. I'm Calderdale & Huddersfield.

Whole thing took 3.5 hours including an hour's delay starting as the unit was so busy.

I took an anti-nausea when I got home (just to be sure 😉) and promptly fell asleep on the sofa until 9 when I took myself off to bed. Bit of a wakeful night and finally wide awake at 6am. Definitely feel a lot brighter and less nauseous than on the EC - so far anyway 🤞and no nausea today.

Hoping I don't get the constipation that was caused by the mega, long acting anti-nausea drug I was given - Movicol doesn't seem to agree with me and sent me the other way last time so I'm avoiding! Time for a bowl of bran flakes instead I think!

Big hugs to everyone having treatment this week ❤️

Joy

x

louby_lou69
Member

Re: October 2021 Chemo Starters

@confused22 

Defintley ask it to be moved. Could you have it the following Monday?

I slept fitfully until 2am (thanks steroids) then woke on & off until I gave in at 6am, my partner wakes at 5am and he started stirring early as the cricket has started and he was listening to it on his iPod 😂 I couldn't hear it but knew what he was doing. He loves cricket! He's gone to work now but will no doubt  be listening to it on the radio.

No sickness and no woozy, spaced out feeling yet. I also wonder what to expect bowel wise. With EC I was taking Movicol which I didn't particularly like as it seems to stay in your system for a long time. I've heard you get diarrhoea with paclitaxel so I'm wary of taking anything yet. Will see how today goes.

Lou x

 

confused22
Member

Re: October 2021 Chemo Starters

@louby_lou69 

Hi and thankyou for the heads up on how everything went today. I too hope this regime is kinder to you and that the recovery is easier xx 

well done ✔️ it’s been a tough time with the picc line problems so I’m glad you didn’t have trouble with the cannula.

As always, I follow you, I’m going to ask to change my day if it’s possible.. I hit Christmas Eve and NYE and I’m not a fan of being ill for the next 9 weekends if I can help it, but we will see.

My paclitaxel starts on Friday so interested to know how you get on over the next few days xx

 

Rest up and take good care 

 

 

Asharia
Member

Re: October 2021 Chemo Starters

I’m really glad your ankle is feeling better and that today went ok Lou. Hope you’re back at home tucked up in bed now and sleep well (at least until the steroid wake up 😏 )

nicola2610
Member

Re: October 2021 Chemo Starters

@louby_lou69  Well done, and glad your ankles are getting better.

louby_lou69
Member

Re: October 2021 Chemo Starters

My ankle is now less swollen and feels much easier. It's still a painful but seems to ease once I get walking.


So today I had my fourth chemo but first paclitaxel & Herceptin. 
My appointment was at 10am but I didn't get into a chair until 10.40am. I had a lovely nurse called Jovy, she explained everything really well and was so pleasant. She put the cannula in the back of my hand and I barely felt a thing, she's obviously a pro! Told her I want her every week.

I had pre-meds, steroid tablets, anti-sickness and antihistamine through the IV, waited 30 minutes for them to start working and then the paclitaxel was started, took an hour. I watched 2 episodes of Virgin River during this time.

Lovely lady offered me a sandwich and a yougurt, which was welcome, I'd only bought some biscuits as I was told the treatment was 2 hours but because it was the first one it actually took 4 hours. Once the pac was done I was taken into a side room, leggings down and then Jovy administered the Herceptin into my thigh. She did it really slowly as otherwise it can sting. I had to wait 30 minutes to check I didn't have a reaction and I was allowed to go home with my bag of medicine, anti-sickness and 2 filgrastim.

 Next week I'm just having the paclitaxel so that should be quicker. Hoping the side effects are kind. 8 to go! 

Good luck to everyone having treatment this week. We can do this 

Lou x

nicola2610
Member

Re: October 2021 Chemo Starters

Hi All,

I am sorry to read that some of you are really having a tough time of it.  Sending lots of virtual hugs your way.

I am having chemo this weekly.  My first phesgo.  Eight years ago I had Herceptin and honestly for me it was one of the easiest treatments I had.  Perju was not available then so phesgo is a new experience for me.  

Had a very good telephone appointment with oncologist today.  She discussed doxetacel with me.  I did not do so great on the first dose last time and that was 100% dose rate.  She said on balance she would prefer to give me an 80% dose rate for first doxetacel this time.  I agreed.  I need the drug to do what it needs to do, but she reassured me the 80% dose rate is good for me.  I feel confident in what she is saying about the dose rate and it has taken a lot of worry away for me.  The 80% dose rate is what I had as my second dose last time and tolerated that just fine.

So, I have blood test tomorrow, phesgo on Wednesday and chemo on Thursday.

Really been enjoying feel well over the last week.  We put the Christmas tree and decorations on Saturday, I then decided that the car needed a good clean inside so did that as well.  Was proper knackered by teatime on Saturday but it felt great to get the jobs done.  Oncologist asked how I was I explained Saturdays activities and she just said ok your doing fine 😆  

I wish everyone well for the cycle they are in or the cycle they are soon to have.  We are all getting there with it, even with the bumps in the road along the way.

 

nicola x

 

 

 

Asharia
Member

Re: October 2021 Chemo Starters

I’m really sorry to hear some of you are having a hard time too.  @louby_lou69 that sounds really painful with your veins and ankle.  I Hope you can come up with a plan with the oncologist, will they try a port or not now the PICC failed?

love the wig @Jani62 , it looks great with the scarf!  Must be hard in the Queensland summer though.  I used to travel to Brisbane regularly for work, absolutely loved it there but the sticky heat can be quite tiring.  My hair is still hanging on in there with the cold cap, although I have a couple of itchy patches today so not sure what’s going on there.

 

@joeyhazza , I spoke to my BCN last time about timings for surgery and radiotherapy to try to get some sort of schedule for next year.  She said 3 to 6 weeks between last chemo and lymph node clearance surgery, they try to get it done as soon as bloods recover (but bear in mind my last ones are weekly, if you’re on a three week cycle it’s almost certainly not going to be as short as three weeks from the last dose).  Then 4 to 12 weeks between surgery and radio, normally around 6 but the key is that you need to be a consistent shape for radio, so all the swelling and seroma  needs to completely settle and the wound be well closed with no infection or dehiscence.  Usual caveats about individual circumstances as well as hospital wait times, but hope that gives you some idea.  

Ash xx

joeyhazza
Member

Re: October 2021 Chemo Starters

Morning all

 

@Asharia Im having pain in my veins too from EC. I have one left on Friday before switching to DT. My oncology team has said that this is a side effect of EC and should settle down once it’s gone. It feels like cording and my blood is also tricking out. To be fair I’m not great at giving blood anyway!

I have to admit I’m a bit worried about my change to DT having read the posts with adjectives like ‘dreaded’. Is anyone doing ok on it? I have four of them taking me to 3rd March if there’s no delays in between. 

Wondering what the gap will then be between that and my lymph node clearance. Then again between that and radio. Feels like such a longer road still.

Im tolerating EC well though now. Just nervous about the switch on New Year’s Eve. My hair is growing as well which is odd. They’ve said I must have very strong hair. It’s patchy mind you.

Jani62
Member

Re: October 2021 Chemo Starters

Hi Ash

I am on a similar path as you with my last chemo scheduled for March, then surgery and then radiotherapy. It does feel like a long journey and I am so desperate get over to the UK to see my mother.

I am on a dose dense course of two-weekly doxorubicin and cyclophosphamide (AC) with three cycles done and my last one tomorrow.

This last cycle has been hardest with very low blood pressure, a rash and bruised looking nails. I was very happy when they were able to delay my last one by three days so we could celebrate our anniversary. I tested the wig in public for the first time. It is much too hot and humid to wear it during the day… summer has hit Queensland early. My favourite spot is under a fan with the bum fluff on my head dancing in the breeze. Sometimes I give the postman a bit of a shock. I now have a floppy hat by the door!

 

D4FFA069-494D-42B0-B176-D1337D25A247.jpeg

I then start weekly paclitaxel with three weekly Herceptin for 12 weeks and will have a PICC line just in time for Christmas. 

So 6 weeks down and 14 to go. I have my looking good feeling better session on the 13th. My eyebrows and lashes are getting thinner but I have never worn makeup. It will all be a new experience.

I totally  agree with you all, going through chemo certainly makes you appreciate the good days, family and friends.

Thank you all for being so open and honest on this forum. Sharing your stories has helped me so much as most of you are slightly ahead of me. 

Hope you had a good weekend.

Jani

 

 

 

 

 

 

louby_lou69
Member

Re: October 2021 Chemo Starters

@Asharia 

Im so sorry you're feeling down. Things aren't plain sailing in my world. I had my PICC line removed after my second EC, my veins are very narrow and it just hurt. The veins in my arm have hurt ever since. I also noticed a similar pain in my right leg in my calf. It feels like the veins are sore. It's been painful to walk on but once I get going it eases. I've mentioned this to my oncologists nurse who made a note on Wednesday.

Today I realised the pain had moved to my ankle, so I took my sock off and wow my ankle was so swollen. I rang the chemo emergency number and they arranged for me to go to Ambulatory Emergency Care. It took 2 nurses 3 attempts to get blood, they said my veins are hardened and the blood was dribbling out. I actually cried as it hurt and I just felt so pathetic. I'm  so bruised. I was sent for a scan and there is no evidence of a clot and bloods have come back normal. My ankle is still swollen, I've sat with it raised all evening. I was given no advice really other than that. 

I think I need to speak to my oncologist on Monday as the situation with my veins is quite worrying. I have 9 pac to go with the necessary bloods too. 

I hate feeling so vulnerable and powerless. 

Asharia
Member

Re: October 2021 Chemo Starters

Thank you for understanding Fi.  And I agree we need to take things in steps, and look forward to each one ending.  Eating the elephant bite by bite.  I would definitely not want to stop you from posting about and celebrating your chemo end date, I’ll be 100% cheering you on when the time comes!  

Had a nice walk today, and I don’t feel completely wiped out afterwards, and looking forward to dinner tonight.  so things are still improving.  Onwards one day at a time. 

Fifo
Member

Re: October 2021 Chemo Starters

Asharia

No need to say sorry Ash. I’m also feeling very frightened about the side effects of my next chemo including Phesgo which I’ll be having for 12 months.

It all seems like such a long road ahead and for my own sanity, I try to process each segment of treatment in steps – hence the reason why I mentioned my chemo end date.

It’s good to hear you’re starting to feel better and I do hope you have a fab couple of weeks. If there’s anything positive to say about chemo side effects, they really do make us appreciate the good days.

Keep your pecker up because you're dong great.

😘xx

Shi
Community Champion
Community Champion

Re: October 2021 Chemo Starters

asharia ❤️ Keep focused you are doing great, December will fly by and once you hit new year it does go quick and you’ll be ringing the bell in your unit before you know it if your has one and it’s allowed or if you want to, also don’t forever to treat yourself to something extra nice for finishing chemo, I had bottle Chanel perfume as my treat, just something to look forward to, always reward yourself with treats ❤️💕💕Shi xx

Asharia
Member

Re: October 2021 Chemo Starters

I know it’s idiotic but I’m actually so jealous of both of you Fi and Lou finishing at the end of January.  I’m having 12 of the PAC, so don’t have my last one until March, so more like a third of the way than half way there.  Just at the moment that feels so very very far away, and the first week of this last cycle was quite tough so the thought of feeling like that for a solid 12 weeks with no break is scaring me.  Hopefully it won’t be that bad, I’ll be keen to hear how you get on when you start Lou.  

Sorry for the downer, I am at least feeling better physically today so hopefully I’ll get more cheerful again in the two good weeks before the next session. 

Hope you all have a good weekend,

Ashxx

Fifo
Member

Re: October 2021 Chemo Starters

louby_lou69

Hi Lou, thanks for your reply 😊

I've been thinking more and more about moving onto paclitaxel instead of the dreaded DT and nearly contacted my oncologist a few weeks ago to discuss it. The only thing that stopped me was knowing I'd have chemo once a week instead of once every 3 (I'm such a wuss).

I'm due to have Docetaxel on Monday directly after my first shot of Phesgo which is a mix of pertuzumad and trastuzumad.

Fifo_1-1638533149732.jpeg

I've kind of resided myself to seeing how I get on and switching to pac if I have a bad reaction.

It's good to hear you managed to move your infusion day to Wednesday and will be able to enjoy Christmas. You're right, things are really moving fast now and there is light at the end of the tunnel. All being well, I should have my last chemo on 19 January which doesn't seem too far away now.

I'm going out later with my husband and daughter to buy a few baubles for our Christmas tree and having a meal after. So looking forward to that and the weekend...I'm going to enjoy every moment.

Hope everyone else is well and have a fab weekend when it comes.

Fi,

xx

 

louby_lou69
Member

Re: October 2021 Chemo Starters

@Fifo 

I posted on a couple of previous boards to ask about paclitaxel- as I start that next week. You could try that Fi and see what peoples experiences are. 

I spoke to the appointments lady this morning and my first pac+Herceptin will be Tuesday 7th De. and then my appointments will move to a Wednesday thereafter, so all being well (as so many things can change) my last chemo should be Feb 2nd. 

There is now a chemo starter forum for December. It's whizzing by, doesn't always seems like it but lots of us are half way through now (even though I've got 9 chemos it's over 9 weeks) 

I hope everyone is ok as treatments progress.

Lou x 

Fifo
Member

Re: October 2021 Chemo Starters

Sorry, but just realised I use the wrong word.

The ice gloves and socks are not for neutropenia as previously mentioned, but to help with neuropathy.

I should probably change my user name to confused.com 🙄

Fi

xx

Fifo
Member

Re: October 2021 Chemo Starters

louby_lou69

Glad you're feeling well Lou and had such a lovely time in Manchester. Alan Carr is ever so funny and it must have been a real treat to see him.

Re: Christmas chemo. I was due to have my 5th cycle on Monday 27 December which is a bank holiday, but was told I'll have it on Wednesday 29th instead. 

My next infusion is on Monday the 6th - the dreaded Docetaxel. ARRRH!

I'm also starting a course of Phesgo injections every 3 weeks for 12 months. I'll have the first 3 shots in combination with Docetaxel but wondered if anyone else is due to start Phesgo or currently taking it?  

The reason I'm asking is because I had my 3 month ECG check last Monday and it showed a decrease in the electrical function of my heart (a possible side effect of EC). Phesgo also damages the heart, so I'm pretty anxious about the long term side effects.

Probably a conversation with my oncologist I know, but if anyone has personal experience of taking Phesgo it would be good to hear your thoughts.

On the plus side, my port fitting went well. I was in a bit of pain for the first two weeks, but it made my last chemo so much quicker. Sucking ice cubes also helped as I had no mouth ulcers, just a little roughness around the gums which wasn't sore. 

I did have a reaction to one of my Filgrastim injections though, which was surprising because I've never been up nor down with them before. I know that some of us have experienced muscle or joint pain with them, but this felt like an extreme build up of lactic acid after a major gym sesh, only 10 times worse.

Even lying back on my pillows hurt. So, I took a Claritin tablet before my next lot of injections which seemed to do the trick as I had no further symptoms. I've also bought ice gloves and socks to help combat neutropenia and nail loss (side effects Docetaxel). Fingers crossed they'll work and if anyone's interested in trying them, they're available from Amazon.

Anyhoo, wishing everyone all the best with their next chemo. We only have a couple more months of this madness to go. So, keep that last chemo date in sight because we're almost there 😃

Fi

xx

  

louby_lou69
Member

Re: October 2021 Chemo Starters

@Asharia @Glad you have something extra for the sickness. It makes such a difference.

I put our tree up this week too. We had new furniture, sofa etc during August and September so we've had to put it in a different place this year. I've wrapped a few presents too so I'm feeling very festive.

On Tuesday we drove into Manchester, we went for a meal and then went to see Alan Carr. It was AMAZING, Alan was so funny and we were 8 rows from the front, so great seats. But I just loved being out in the real world, it was the best tonic. I even wore my wig for 6 hours, towards the end of the night I'd forgotten I was wearing it. I've worn it about 6 times now, so for £13 it's honestly been a bargain.

I had a telephone appointment with my oncologists nurse yesterday. General talk about how I'm feeling, my chemo is usually on a Tuesday and she says that because of how Christmas falls one of my chemos will be on a bank holiday so I won't have it that week, I'll miss a week. I'm gutted about this as my last chemo should be on the 1st Feb, my birthday is the following Sunday and I was so hoping to have a nice celebration over that weekend. I still haven't got confirmation about my appointment yet so I'm very tempted to ask if my chemos can be moved to a Wednesday then hopefully it will mean I don't miss a week. 

I also wondered if the chemo centre is shut for 2 bank holiday days how many people will miss their chemo, plus bloods are usually done the day before? I just can't understand that chemo won't happen for so many people. I know that the staff certainly deserve time off but I would've thought it would have been business as usual.

Anyone else been told this?
Lou x

Asharia
Member

Re: October 2021 Chemo Starters

Afternoon all, I hope everyone is ok and had a good Saturday, and that you’re feeling less tired today Lou.  I had my third and final EC yesterday, so far very similar to last time so hopefully the rest of the cycle will follow.  I got a lovely new anti-nausea drug to take at night, the oncologist said there was no need to put up with feeling queasy and didn’t like the fact I was waking so early with the steroids.  It’s just a quarter tablet, but I took it last night and slept through until 6, which is a great improvement on around 3am which is where I was last time.  

Today we had snow!  (Well, wet sleet really but in the scheme of appreciation for small things I’m calling it snow).  So I went out for a cold and windy walk, then put up my Christmas tree and candles, and put on Christmas music and lit the fire.  So I’m now feeling very snug and happy, it’ll just be the two of us this year but we can still make it special.  I also talked to my BCN about surgery timings, and we agreed I can book a week away for my birthday in May (“as long as I’m near an a&e and don’t get too remote in the mountains”, she knows me so well already 🤣), so I’ve done that and now have one nice holiday to look forward to.  

Ash xxx

louby_lou69
Member

Re: October 2021 Chemo Starters

@confused22 

I totally agree with appreciating things more - I even get joy out of the most mundane things. I swept up the leaves and just felt happy to be outside in the fresh air and sunshine. 

Yesterday I too went for a walk and chatted to a friend I bumped into along the way. She had breast cancer 11 years ago, she had a mastectomy at 39. Today she's 50 and spending the weekend in Spain with friends. Her best friend now has breast cancer and is actually a breast cancer nurse at our local hospital. It's because of her friend that I've now worn my wig about 5 times as I saw a photo of her on Facebook in her wig and I wouldn't have known she was wearing one if I didn't know her circumstances.

Im so looking forward to the day when I don't wake up tired, this morning I feel drained. My eyes water too so much in a morning.

Anyway, I'm off to have a shower and get ready to mask up and do the food shop whilst it's still quiet. 

Lou x

 

confused22
Member

Re: October 2021 Chemo Starters

@nicola2610 

 

Fabulous job on the wig and hat combo, I’m going to definitely give that a shot! You’re right it’s freezing!! 

And oh my goodness, yes I walked, I was out in the village for two hours… I stopped to chat to anyone who would listen to me 😂😂 it was great!

I seem to have had a lucky energy day today that I wasn’t quite expecting for day 6  so I chucked more things on the tree, made dinner from a ‘this morning’ recipie (spag Bol delicious and very good for freezing for when the  chemo days are crappy) I cleaned and I did some painting which has been annoying me for ages!!

I’m shattered now but in the best way ..

 

I love the recovery days, they make us just “appreciate” everything.

 

I think this is one lesson that I will carry forward … I did have a friend who was always going on her cheap weekends trips with her friends, krakow and Paris etc you know the ones… she had been through breast cancer, she did say it made her just appreciate life’s little joys and trips away with her friend was one of hers.

xx 

Shi
Community Champion
Community Champion

Re: October 2021 Chemo Starters

❤️Nicola ❤️ no rules broken just concerned about keeping you safe that’s all ❤️ 💕💕Shi xx

nicola2610
Member

Re: October 2021 Chemo Starters

Thanks Shi.  I did think about it before I put out the information, and was happy to share. Trust no rules broken but just advice from you.  

Kind regards

Nicola

nicola2610
Member

Re: October 2021 Chemo Starters

@confused22  I hope that you’ve managed to get out for a walk.  I managed a short walk this morning, but off out (after a delivery arrives) for a good hours walk all wrapped up.  It’s beautiful out but my gosh it’s cold.  The wig and hat combo is coming into its own and giving me double warmth on my head.  The dog keeps looking at me as if to say “come on” 😆.

confused22
Member

Re: October 2021 Chemo Starters

I’m also fortunate to live In a wonderful place, North Yorkshire .. the walks are amazing and even in the cold I just love being out.

I can’t remember who has written but the general consensus that I’m getting is wow… we are bloody amazing. Just think how much we’ve been through and we still all want to get out and pick ourselves right back up before the next treatment. 

 

we’ve been honest and supportive and sympathetic and just…  here!

 

it’s not a forum any of us thought we’d be on but I just wanted to say we are doing great!!!! Even when we’re not doing great, we are still strong determined ladies that are pissed off because we are struggling 🤣

 

I don’t really have a point to this post, other than that I’m laid in bed mustering up the energy to get dressed and attempt a walk on day 6 … I’ve done it before much much earlier, but this is EC 3 and EC 3 is to me, like trying to fight Tyson Fury ! 🥊


Shi
Community Champion
Community Champion

Re: October 2021 Chemo Starters

Gentle reminder everyone please be careful how much info you give out on the main threads, they are open to the world, keep safe 💕💕Shi xx

nicola2610
Member

Re: October 2021 Chemo Starters

@Asharia  I am very fortunate, I live in Lavenham, Suffolk, which is a bit of a tourist hotspot, not least of all because it is used for filming reasonably often enough, but it also has some amazing footpaths walks that me and the dog enjoy on a regular basis.  

Asharia
Member

Re: October 2021 Chemo Starters

Thanks @nicola2610 , it’s good to be able to talk about it with all of you who are also getting through it.  Surprisingly the running has been fine, my pace and VO2max have both taken about a 10% hit each cycle, but seem to come back up in weeks 2 and 3.  No idea how I’ll be on this final cycle or the PAC, but I’ll keep going as long as I can.  It’s always been my relaxation and stress relief, and even in today’s grey chilly weather it’s beautiful down along the river.  I hope you have somewhere nice to go when you do get out for your walks.

really hope you feel better soon @confused22 , and can get out and enjoy your party and baby shower.  It’s ok to feel blergh though 🤗🤗🤗

nicola2610
Member

Re: October 2021 Chemo Starters

@Ashariagood luck with your next lot of treatment.  I think most of us are finding each cycle a little bit more of a struggle, but it’s the nature of the treatment beast.  Stay strong.  I’m impressed you are still running.  I’m no longer jogging but walking lots when I can.  Today was my first day out of the house in 8 days, and despite the coldness it felt good. 

nicola2610
Member

Re: October 2021 Chemo Starters

@LMitchell  It has taken me until day 8 this time to start to feel ok.  I hope tomorrow is a much better day for you.  You have lots of lovely things to look forward to. X

LMitchell
Member

Re: October 2021 Chemo Starters

Confused I am so with you. Day 6 after second ec and I’m so low and yukky. They reduced by 80% but still feel exhausted, maybe it won’t last as long this time. Hats off to you guys getting out and about and even working, you are Amazonia (Wonder Woman) I am sure 😃. I’m hungry a lot but mouth feels meh so struggling to find things to eat. Yes yes worries me, sorry nothing happy to say. 
although looking forward to buying my puppy a winter coat, work Xmas do and  my first ever baby shower, but for now feeling blurgh 😫 

Asharia
Member

Re: October 2021 Chemo Starters

Bookish, I’m so glad you had a better cycle this time, I really felt for you with everything you went through on your first.  I hope the fatigue continues to improve so you get some good time before the next one.  

I certainly agree with the wanting to eat all the time.  I’m struggling to keep to a reasonably normal diet, and I’m sure it will be even tougher over Christmas.  Don’t seem to have put on too much weight yet, although that might be because I’ve given up alcohol 😭 because of the liver issues, so I think that’s offsetting the extra chocolate! I can’t even really blame steroids at the moment, I’m at the end of my second cycle so it’s been two weeks since I’ve had any. 

This week is my third and last EC before moving to weekly PAC.  So bloods today, oncologist call tomorrow and treatment Friday. It always feels like a pretty full on week this one, not sure how I’ll cope when it’s every week.  I’m physically feeling fine, been keeping up with work and running, but really struggling mentally at the moment.  I think I got through the first two with a certain euphoria that it had got started, but I’m bored now.  Oh well, one week at a time, I’m distracting myself by booking holidays for next year 😃. And only three weeks left at work before I have two weeks off for Christmas, so at least I’ll get a break for the first couple of PAC cycles.

 

 

 

confused22
Member

Re: October 2021 Chemo Starters

Hello  lovely ladies 

just checking in and wanted to thank you all for updating.

 

ive been pretty rubbish with even being able to look at my phone and concentrate this time.

 

like you Lou I’ve struggled with my 3xEC

ive been all over the place, eating so much that my face is now resembling a football and the fatigue is just wicked.

 

ive sobbed and felt completely useless and such a burden it’s horrible. 
My Christmas tree is also my pride and joy and this year it’s up and I feel like I’ve been looking at a bare tree with lights on for ages… but it’s a work in progress. 

we will get there. 

emotionally I feel battered, and then exhausted physically. 

I’m on day 5 and the last of the injections have just been done. 

Does anyone else feel a slight sense of judgement from the oncologist for not being active? 

in my area there’s an active against cancer group, I have signed up to it but at the mo the thought of that is filling me with dread! I can’t even climb my stairs some days.

the tired side effects are definitely the  worst aren’t they?

 

im hoping to be off my sofa later and finish that tree. It’s the little goals that matter … in the long run we are fighting something much bigger than we ever imagined xxxx 

 

nicola2610
Member

Re: October 2021 Chemo Starters

@bookish  Glad to read this cycle is better for you.  Hopefully that fatigue is improving and all the side effects are starting to melt away.  

louby_lou69
Member

Re: No naps for me today - yay!

@nicola2610 

Im feeling better today too. I've been to Home Bargains for a few cleaning bits this afternoon and bought some fudge. I ate the whole pack on the way home - definitely eating stuff I shouldn't be. You are not alone with the steroid munchies.

nicola2610
Member

No naps for me today - yay!

Hi All,

I finally feel like I’m coming out of the chemo I had last Wednesday.  Still slow going, but not needed to nap at all today.

I have however spent a huge chunk of the day looking up recipes, mostly for the slow cooker, then doing on online shop.  My husband does so much.  He works, he looks after me, and he also pops into his mums four days a week as she has Alzheimer’s and he makes sure she is eating and drinking etc.  I feel that the slow cooker is something I can do most days and we can have a good healthy dinner ready for whatever time he gets home.  Of course, there has been biscuits, and jelly babies also go into my food shop as well.  I’m definitely feeling the effects of the steroids- just want to eat!  Anyone else feeling that?  

Hope everyone is doing well.  Onwards and upwards.  X

bookish
Member

Re: October 2021 Chemo Starters

Hi all. Quick check in from me. Had my second DC last Wednesday, and it's been tough but okay. Well, not ending up in hospital like first time makes anything an improvement! Although I'm a little worried I will have to go in - I've twisted my neck overnight, and the port tube doesn't seem 100% happy. Sigh. 

Was in exactly half the time last week as the first, my new norm will be 4½ hours with the pre-meds and slower pace. Went smoothly. Only 'hitch' was discovering they'd given me too many steroids last time: I got 5 days total, and they say it should only have been 3. Meant I stopped that boost one day after treatment, but actually, figured bringing the 'bad' phase forward - and getting it over with quicker - isn't the worst.

So, I've been dosing myself a lot with laxatives to get past that problem (fingers crossed!), and main side effects have been crushing fatigue - I am so regretting having stairs! - a lot of aches and pains, and various things tasting a bit nasty. I think if it wasn't for the neck (it hurts to cough, and of course the filgrastim gives me a cough!) I'd be coping pretty much okay. Fingers crossed, long may it continue! 

Still achy today - sleeping is hard - but feeling a lot less totally wiped than yesterday, so hoping that I might actually get two semi-decent weeks to potter about with hobbies before treatment 3 - and the halfway point! 🙂

joeyhazza
Member

Re: October 2021 Chemo Starters

Well, what can I say. Third EC was on Friday and I’ve done pretty well this time.

The team had to give me a sedative Thursday evening through to tomorrow which prevents the urge to wretch as I’m out of anti sickness meds that can be used at home due to allergies. I can honestly say that on Saturday I didn’t even feel like I’d had the treatment. 
Yesterday I was a bit snoozy and weepy but Inthink that’s the Zoladex they started me on last Wednesday.

Im trying to get my third Covid vaccine booked in but need it to be in December but all dates end on the systems in November so that’s a little annoying.

I have my last EC next and will gladly be half way through this treatment.

Just need to navigate the ups and downs of the Zoladex now then to see when that stabilises (if it does). Can’t keep crying!!!!

louby_lou69
Member

Re: October 2021 Chemo Starters

@nicola2610 glad you've not felt as nauseous this time around , it certainly makes a difference.


Today is day  8 of my third EC and my worst side effect is lack of taste. My mouth is horrible (no ulcers or sore throat) nothing tastes right and I seem to be eating more in a bid to taste  something. It's awful. 

Im hoping I start to get some energy back from today and enjoy 2 weeks before weekly paclitaxel starts on the 7th Dec. 

Yesterday my 2 lads (21 & 18) thought they'd help by getting the Christmas decorations out of the loft. This is usually my job and I know what's in what box etc. They got the  wrong tree down first and when the box of baubles came crashing down and the box ripped open I had to walk away. I lay on the bed crying and feeling totally helpless and pathetic. Baubles all over the landing! I knew they wanted to help and I didn't want them to see me upset. 

My partner took over and sorted it! Like he said, it's not the end of the world but I just feel so feeble and sorry for myself. Usually I'm the driving force of Christmas in our house but I'm so exhausted I just can't gather the strength. It's so hard not having that usual drive for things. Along with the physical side effects the emotional stuff also cripples me. I miss who I was.  

Lou x

nicola2610
Member

Re: October 2021 Chemo Starters

@louby_lou69  I am a day behind you, but this cycle has made me feel very tired.  This evening I am up and laying on the sofa watching tv, but since Thursday it’s been a lot of sleeping for me.  My nausea has been much better this cycle though, so feeling thankful for that.

hoping by Monday or Tuesday I’ll be feeling back to almost normal.  

hope those who’ve had chemo last week are all doing ok. 

louby_lou69
Member

Re: October 2021 Chemo Starters

Hi everyone 

Hope you are all well. My final EC has been quite kind to me really. I've been very fatigued and my most irritating side effect has been a funky mouth and feeling the need to eat & drink - not necessarily out of hunger but in a bid to somehow taste something- so weird. I'm just so surprised that each cycle has had totally different side effects. 

Im hoping after my last injection tomorrow I'll begin to gain some energy, and enjoy two weeks of some normality. 
Lou x

Shi
Community Champion
Community Champion

Re: October 2021 Chemo Starters

Louby lou ❤️ You would never guess it’s a wig you look amazing 😁❤️💕💕Shi xx

Deep Joy
Member

Re: October 2021 Chemo Starters

😀Hi all,

Just checking in and read reading through everyone's experiences, hope you're all doing OK - we're all getting there. Had my third and final EC on Tuesday and felt a lot worse for the first 24-48 hrs with nausea (and diarrhoea this time, which thankfully passed quickly). Now the usual Akynseo induced constipation which I'm trying to tackle with Movicol. Apart from that, feeling much better today and even been out to the local farmers market.

Next stop, 9 x weekly Paclitaxel starting 7 Dec. I've been told this should be easier on the side effects but when when they told me about the possible reactions during infusion it did put the wind up me a bit! So feeling happy about the end of EC but slightly nervous about the next stage. The nurses did get my schedule wrong and had me down for 3 weekly Docetaxel which is definitely not what the doctor ordered. Luckily I spotted it and after a lot of back and forth they got there. Phew!

@louby_lou69 love the wig! I never knew you could get them from Shein either. Sorry to hear you were so unwell after Round 3 but please you're feeling better today. Am celebrating no more red wee here too 😉

@bookish Love your friend's reaction to the buzz cut. All those movie and music heroins, really made me smile. 🎥🎶

@nicola2610 Fantastic news about the chemo working so well, must be so good to see results like that and as you say, makes it all worth it.❤️

@Fifo Thanks for you comments on my regular 'overwhelm' (sorry it was 3 weeks ago - I have been a bit vacant on here lately and just catching up now!) Your daughter is so right - we are managing. I have to try and remember my other mantra of 'one step at a time'. I'm a terrible over-thinker and do have a tendency to catastrophise. Must stop that! Also, great news o your ultrasound showing your tumour has shrunk. 🤗

 

Take care everyone

Joy x

 

nicola2610
Member

Re: October 2021 Chemo Starters

@louby_lou69  That wig looks fab on you and what a bargain price.

glad you are feeling better today and yay no more red wee.  I’m hoping tomorrow is my no more red wee day.  😀

im feeling ok.  I had a reduced dose yesterday and I can really feel the difference.  I’ve watched a film whilst sat on the sofa today, that was unheard of at this stage on the last two cycles.  I was sleeping more than I was awake.  Really hoping to have a good third cycle to set me up for the doxetacel at the next cycle.

good luck to all of those having their next session of chemo tomorrow, I think there are a few of you.

Shi
Community Champion
Community Champion

Re: October 2021 Chemo Starters

Usually between days 7-15 are your nadir days if on 22 day cycle this is when your neutrophils can be lowest but do check with the nurses on here and seek their advise against your cycle. But always keep vigilant during chemo and anything during your cycle ring rapid response number your team has given you. Burning wee will need antibiotics not a bit of cranberry. And remember chemo isn’t like normal don’t think oh I’ll see how I am in an hour or so, ring and check with your team. They won’t mind they want to get you through safely and you being vigilant helps them do this. 💕💕Shi xx

LMitchell
Member

Re: October 2021 Chemo Starters

Hey there all.

I'm second EC tomorrow. The oncologist has reduced to 80% of the first dose- although I felt I got off lightly with just sleeping for 2 weeks, she says that is too severe and wants to drop me down - they know best.

Lovely wig Lou, for a fab price. I have one wig which is lovely, really comfy, but have to say happy with the bald look and as I get so hot I tend to go without. 

Loading up on water and movicol today. Had a few hours at work yesterday doing a well-being session - lots of cake, games, and arts and crafts. It was lovely, nice to catch up without the work stress, I do miss them all.

Take care all.

 

louby_lou69
Member

Re: October 2021 Chemo Starters

@joeyhazza 

I've read we are most vulnerable from days 7-14 after chemo. How that works on weekly chemo I don't know 🤷‍♀️.

Certainly check with your oncologist, would be good to hear it from a medic.

I know at my pre-op the nurse said to try and get out and do things in a sensible way, some people just live their lives from one chemo to the next and as most chemos can be 18 weeks long that's a long time to be isolating. 

I've been out for lunch, walks with friends, been for coffee and we're actually going to the theatre to see Allan Carr at the end of the month (moved from last year). I shall wear a mask and use hand sanitizer- I'm SO looking forward to it as not done anything exciting for months. 

Good luck for your treatment 💕