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August 2019 Chemo Starters

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Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl and all on the thread,

 

Glad to hear that you are feeling better, and I hope that you have a great time at your two outings this weekend!  I’m sorry to hear that you have joined the thinning hair club (my bald head with a few wisps has definitely moved way beyond the tragic stage, but I am now embracing my wigs which look OK.

 

Yes, I have had quite a marathon in the chemo unit this week - 9 hours there on Wednesday for the first Perjeta and Herceptin infusions, and then 4 hours yesterday for the first Docetaxel.  The sessions were so long due to the time required in the first treatments for staff to monitor for adverse effects (particularly with the Herceptin, where I was disconnected from the cannula after the 1.5 hrs treatment, but then had to be monitored for 4.5 hrs).   Luckily I did not have any adverse reactions, and so will be able to have all three drugs together in a shorter session for my final three cycles.  It feels good to be half way through my treatments - the time has actually passed quite quickly.

 

It has been interesting to move on to the new regime, as I have found quite a few differences so far in comparison to the EC treatments.  The first thing I noticed is that I felt absolutely nothing during the infusions, maybe because they drip slowly from a bag and are not pushed in from a bolus like the EC (where I could feel the bad taste that came with the C, and also a bit of a cold feeling when the E was pushed in).  An unexpected surprise was that as soon as the first new drug went in (Perjeta), I lost the unpleasant metallic mouth taste I have had off and on during most of my second EC cycle.  My taste buds seemed to return to normal immediately, for some reason - the staff gave me a tuna sandwich just after the Perjeta finished, and it tasted wonderful (I then followed it up with a muffin, a banana and a chocolate bar, I’m ashamed to say, and everything tasted as it used to).  When I got home I decided to make an Indian butter chicken dish with saffron rice, and I could smell all the individual spices and later taste them in the dish.  I normally love cooking from scratch, but during the EC cycles could not normally face it, so am really pleased by this change.  I know that Docetaxel does cause taste changes and so am not expecting it to last, but so far, so good!   I also don’t have the woozy head or queasy feeling I used to have immediately after the EC treatments, or - at least at the moment - any other side effects.  I did my first Zarzio injection this afternoon, as I was not given these with the EC, and so far this seems to have gone OK too.  I do have the usual goody bag from this hospital with remedies this time for diarrhoea (large box of tablets, so does not bode well... ) and bone pain, so I expect that some horrible side effects will kick in shortly (probably tomorrow, as I have my last high dose of steroids tonight), but for now things are OK, and so I can’t complain. As we all know, we have to make the best of the good points on this treatment rollercoaster, as there will probably by a dip coming up,  

 

I hope that everyone is having a good Friday evening, and that weekend will also be kind to us all.

 

Blackcat xx

 

 

 

 

Member

Re: August 2019 Chemo Starters

Hello ladies

 

Hope everyone is OK on this beautiful Friday - I am slowly returning to the land of the living following my second cycle a week ago.  Hair is tragic and I couldn't possibly go out without a wig now.  I am getting tired of it falling out but it has slowed down a bit now.  It seems that days 4-8 are my bad days and maybe thats how it will be but I will have a discussion on Monday at clinic about treatment.  I am almost looking forward to radiotherapy now just as it will mean that the chemo bit will be over.....

 

Blackcat - how has your week been as you had a bit of a double hit didnt you?  I do hope you are OK.

 

Off out of the village later for the first time since I got back from the hospital last Thursday - yippee!!  Then hopefully tea at a local hotel with some ex work colleagues tomorrow.  Have a good weekend everyone, much love xxxx

Member

Re: August 2019 Chemo Starters

 

 

Hi Ladies 

 

hope your all ok. I’m now 12 days post EC and feeling pretty much back to myself so trying to make the most of it and been for a cuppa with friends today. 

Blackcat Glad you got booked onto the look good feel great.. you were saying about the magnetic eyelashes.. my friend was literally just telling me about those today. Also worth a look are the C lashes that eyelure do, they have them in boots or you can get them on line, I looked in Superdrug for them but couldn’t see any. There were designed by a lady that’s been through cancer herself and found the usual false lashes hard to put on when you’ve no lashes there to put them onto! The C lashes have an invisible strip across the top which stops them dropping down. Iv not tried mine yet as I still have my lashes in tact... for now! Worth a little look though. 

No reason why us ladies shouldn’t still look glam when going through such a rubbish time..(saying that I most definitely don’t look glad the week after my treatment 😆)

 

big hugs to everyone

Lisa xxx 

Member

Re: August 2019 Chemo Starters

Hi Blackcat and everyone else

 

Blackcat - You are absolutely right about the steroids and the drop in feeling well when they stop - I should have thought of that.  I am sure that is what is happening with me as I have felt so dreadful the last few days - day 7 today and slowly, slowly feeling a bit better so fingers crossed that continues.  I do hope that your change in treatment goes well and is not too awful - it sounds such a long day today for you and then Doxetaxel on Thursday which I think (I am told re me) is about an hour.  Hopefully the side effects will be less than with the EC for you.  Thanks for the stirring words re hair and appearance - I have not been as robust as I would like during this process and if it wasn't for all of you would have crumpled some time ago.  I have to say I am still considering stopping but that is for discussion next week.

 

EM39 - how funny hiding from the wind!  I know what you mean though, the trail of hair I am leaving behind me everywhere is getting extremely irritating and even though I only comb it once a day I seem to comb loads out.  I couldn't go out without a wig on now - I look like my granny on a bad day!

 

Keep strong everyone - you are all doing a fantastic job and we are all one day closer to finishing this journey together. Thanks for all support as ever, xxxx

 

 

Member

Re: August 2019 Chemo Starters

Hi ladies, 

 

Not been on in a while, glad to see your updates and that docs are managing side effects where possible.

 

You are all amazing and it really helps hearing how everyone is getting through this. You are beautiful hair or no hair, and it’ll be back in no time! My wig is much nicer than my actual hair although not wearing it yet as I’m cold capping and still have about 50% hair...had a good laugh about the wind blowing hair off in a previous post...it was windy last week and I was literally hiding in a corner in case it took off with the wind 💨 

 

supposed to have 3rd FEC tomorrow but just had call from hospital that I need to delay a week as blood count too low! Quite disappointing as I feel well but suppose this is necessary to prevent complications! They are going to give me an injection next week to help with this! I’ve bleached my whole house in preparation for tomorrow so at least my house is looking good 👍

 

Take care ladies  xxx

 

 

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl and everyone,

 

I’ve had some problems logging into the forum over the past few days due to a technical issue (the system was not recognising my password), but today everything is back to normal - not sure if anyone else has been having difficulties?

 

Wolvesgirl - so glad to hear that you are at home and not in hospital.  I am not having the injections, but on both EC cycles I have felt fine for the first three days after treatment (when I am on steroids), and then worse on days 4-8.  I had a review of my EC treatment with my oncologist last week, and she said that this pattern is common and is (in my case as least) due to the ending of the steroids, as they protect against SEs from the chemo.  I’m sorry to hear that your hair is coming out, but 50% or so left doesn’t sound too bad at all.    I would say that I have about 2% left in the form of a few wisps, which I have not shaved off as my scalp was too tender, so it is definitely a hat/wig for me these days.   I know what you mean about feeling old, ugly and yuk - when I catch a glimpse of my bald wispy head in the mirror, I feel depressed.  However we are NOT old and ugly - we are just going through some tough treatment which is battering our bodies at the moment, and it is only temporary.  Hair will grow back in time, and our bodies will recover - and each day is one more towards the end of our treatments.

 

Lisalou - thanks for telling us about the LGFB session, which sounds great.  I am booked into one on 7 October, and your description made me look forward to it even more.  I noticed over the past few days that the outer parts of my eyebrows are beginning to disappear, so I could definitely do with some advice about drawing them in.  I am expecting that my eyelashes will go shortly too, so am hoping that they might also be able to give some advice about products like magnetic eyelashes

 

I have a change in my chemo regime this week, as I am moving on to Herceptin/Perjeta/Docetaxel for the final four cycles.  I will have the first two drugs tomorrow in a long session (6-8 hours on the chemo unit, as they have to monitor for adverse reactions), and the docetaxel on Thursday.  If all goes OK, the later treatments should be of all three drugs, and should be quicker. I am a bit nervous of the new treatments and the new side effects they will bring, but this cycle will be no. 3 of 6, so at least I will soon be halfway through.

 

I hope that everyone on the thread is having as good a day as possible.

 

Blackcat xx

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl,

I'm from the Oct'17 group and had the GCSF. Like you, I seemed to be not too bad until I had them-5 with FEC and 7 with T, although I managed to persuade my onc to reduce them back to 5 after the first one! My onc said it was the chemo and not the injections that had affected me, but I'm not so sure! I've just read on July'19 thread that someone has said that antihistamines have helped, so that might be worth a try x

Member

Re: August 2019 Chemo Starters

Hi everyone

 

Hope you are all OK.  I am 6 days post second FEC and at least am still at home which is an improvement on last time!!  However, feeling rough for the last few days (the first two always seem fine) and just bored and depressed sitting around at home all the time.  Just don't have the energy to do much so am binge watching Downton Abbey and being grumpy.  At least my husband can get out and away from me because it can't be much fun for him.  Hair still coming out - about 50% left (maybe less) so wearing my wig during the day.  I just feel old, ugly and yuk!  I need to snap out of it.

 

Does anyone else have the GCSF injections?  I am having them but I wonder if they are adding to how I feel because until I start them on day three I seem to be OK.  

 

Lisalou - I hope I get onto one of those sessions - apparently there is a waiting list but I have put my name down.  A friend of mine got on it just as her chemo was ending but she said it was good.  I love goodie bags.

 

Becky - roll on Strictly Final thats all I can say.  I think my last session is the first week of December so by Christmas I should be fine.  Then just the radiotherapy to get through.  Not even thinking about that for now.

 

Love to all xx

Member

Re: August 2019 Chemo Starters

 

 

Hi ladies 

 

I feel very much the same as you Becky in that I feel like 2 different people. How I feel today in contrast to how I felt last week is totally different. I think it’s just a case of listening to your body and looking after it. 

 

So today iv been to the look good feel great session that are available to us.. have any of you ladies been to one of these?? If not I’d highly recommend! The goody bag you get to take home is just amazing!! No 7, Mac, Clinique, Rimmel and many more top quality skin care and makeup items in it. They give you tips on how to look after your skin while going through chemo and how to do your brows and make up. I just found it a lovely morning with a group of lovely ladies who are all going through the same thing. And of cause you get to take the goodies home with you. Wish I could put a picture on to show you all! 

 

Lisa xxx

 

Member

Re: August 2019 Chemo Starters

Dear All,

 

Hope you're all doing well, and it's been great to catch up on your journeys! Sorry, I've been a bit MIA on here - I sort of feel like I'm two entirely different people at the moment, either immediately post chemo smelly ghost, or on the good days I've been a bit of 'duracel bunny trying to do everything' which I'm not entirely sure has been a good plan, as I was utterly exhausted even going in for my fourth and final EC last Friday so think I've been overdoing it on the better days! I'm on day 4 post EC now and haven't even made it in the shower since Saturday (first cycles I was always up and dressed and at least walking round the park, but this fatigue is definitely culminative!), but actually doing my best not to beat myself up about this and just take it as it comes a little more this time round.

 

Hopefully this cycle will follow the same pattern as the last and I'll be up and about by the end of the week - I was quite down in the dumps at this point last time, so I'm just trying to remind myself that these are days just to get through, and actually trying to embrace the telly and the snuggly blankets! This treatment might seem like a long long time, but once we're through it we will remember this as a blip, I hope! 

 

Thanks for the weekly paclitaxel tips mini mad, I'm hoping desperately the side effects are a bit more manageable on the new regime, but a little worried about not having the 'good weeks' imbetween doses to perk my spirits up, and another 12 journeys into that dreaded chair feels pretty daunting at the moment. Wolvesigrl - 13th December is hopefully my finish date so I'm with you on the Strictly final celebrations (everything firmly crossed!).

 

Right, need to somehow move myself off this sofa to eat something nutritious for lunch - last time I went off all food on day 5 (gah) and normal stuff is already getting unappealing (the lingering smell of my husband's toast is making me feel very sick) but hoping I can locate something more nutritious than oven chips for lunch! 

 

Big love to you all - every day is another day through this! xxx

Member

Re: August 2019 Chemo Starters

Hi Julie

So sorry you have been down - its such a rollercoaster isn't it?  I didnt realise what a long treatment time you have in front of you but as you say the journey is a means to an end and I am sure you will look back on it and feel that you did the right thing.  I feel bad moaning about my 6 cycles and some radiotherapy!  

 

The portacath is a great idea - our eldest grandson was diagnosed with leukaemia at the age of 2 3/4 and had a port put in - he referred to it as his "Ironman heart" (something to do with films) and it lasted the whole 3 years + of his treatment and caused no bother to him at all.

 

Wishing you every good wish for the rest of your treatment - as you say, its great to have this group - I have found it very supportive. xxxx

Member

Re: August 2019 Chemo Starters

Hi Spottycotty

 

Thanks for the tip re Toppik - I don't know if it would be any good for me as I have really thinned and I think people will just see my hair which is normally thick and really messy looking thin and even messier.  The wigs are OK actually - I know on the Paxman site some say you shouldn't wear a wig during the day but tbh as I am trying not to let people know about this I don't feel I have much of a choice as wearing a scarf or turban will be a bit of a giveaway!

 

Glad the Toppik worked for you though.  Enjoy the weekend. x

Member

Re: August 2019 Chemo Starters

Hi julie, sorry to hear you’ve been suffering with the sideeffects, it’s true that when you tell people about nausea or fatigue they interpret it as feeling a bit sick and a bit tired but we unfortunately know different don’t we!!!

glad you’re feeling a bit more up beat, go out and enjoy yourself this week while you can!!

 

Wolvesgirl, have you tried toppik for your hair?? I saw it on the Paxman site and bought some so I was ready for when I needed it. it’s like hair fibres and comes in a tin with like a pepper pot lid so you can just shake it onto the bald patches and it fills it in, my hubby was astonished how well it worked for me, you can get different colours depending on your hair, I used mine for the first time when we went to London as I didn’t want to wear my wig all day and it worked a treat. 

You can buy it from amazon.

Maybe worth a look

for you ?

Member

Re: August 2019 Chemo Starters

Hello everyone - I've been missing from here for a couple of weeks because, to be honest, I've been feeling quite low.  I had my second treatment 2 weeks ago and have felt pretty rough since.  I called the hospital 2 days ago to ask if there's anything else I could be given to help with the nausea/digestive problems or whether I just need to put up with it, and hopefully I'll be able to have an antacid for my worse days (around Days 5 - 9).  My next treatment is next Thursday (19/9) so fingers crossed!  I have also been much more tired during the second cycle... although when I spoke with the nurse 2 days ago she told me my bloods showed I had very low haemoglobin levels - so I suspect that's why!  I'm now eating lots of weetabix, broccoli, some red meat to try to raise my iron levels in time for next week.

 

Good to hear some of you are moving on to different treatments.  I've been on Docetaxel + Carboplatin, plus Pertuzumab + trastuzumab (Herceptin) both times so far, and will continue that for 4 more x 3-weekly cycles (plus Zoledronic Acid last time and continuing).  Then I'll be having just the Pertuzamab + Herceptin for a further 12 cycles (following a lumpectomy), but those two apparently don't cause the same side effects as the chemo... so I'm looking forward to that!  In all, I'll be on the P+H for over a year (3-weekly) and then it will go 3-monthly and then 6-monthly, along with the Zoledronic Acid.  It seems an awfully long time to be having treatment but I guess it's the end result we need to look forward to, not the journey.  Because I'll be having so many drugs over such a long period I've had a 'portocath' fitted into my chest.  It was a proper operation to put it in, and I now have a lovely plastic lump (under my skin) right next to my bra strap, but it does mean all blood samples are taken through it as well as the drugs be administered through it so my veins are not suffering.  I think my biggest celebration will be when the portocath is removed (another operation!) as it will finally feel like I'm done.

 

I've also been cold capping - and didn't find it too bad at all.  I think I'll keep going as still have a reasonable amount of hair, although definitely about 50% thinner than it was with a couple of small bald patches which have caused me to move my parting around to a number of strange places!  I've bought some turban-like head coverings, but have so far resisted a wig... although I've picked one online so I can order it urgently if necessary.  Thank you very much to everyone who previously gave me some advice on wig buying - it was very helpful.

 

Sorry for all the detail, but we all seem to be having very different treatments so I thought I'd put mine on here in case anyone else is having similar.  I'm planning to enjoy the next week, now that I feel almost normal again.  I'm waiting to be given the dates for my last 3 chemo cycles, but if all goes to plan I've worked out that I should be through the chemo part a couple of weeks before Christmas - woohoo, can't wait!

 

As someone else said, although we don't know each other personally, it's so helpful to be able to be in touch with you all going through this - family and friends are brilliant, but I for one didn't know what nausea REALLY meant before starting on this so why would they?  I've been managing a daily walk for about an hour since Day 10 (I've got a very lively dog) and that has certainly lifted my spirits, although leaves me tired afterwards.

 

Very best wishes to everyone, and I hope your next cycles go well.  I'm looking forward to being half way through the chemo next time (third cycle).  Enjoy this beautiful weather - although keep those heads covered if out in the sun!

 

Julie xx

Member

Re: August 2019 Chemo Starters

 

 

Hi mini mad 

 

Thank you so much for your words of reassurance! I am hoping I can get through it and put up with all the different side effects 😳 it’s all very daunting. 

Iv been sooo exhausted these past 2 days more so than my first cycle. But I feel a lot brighter today (day 7) and have got washing out on the line (so satisfying!) and had a walk into my local town which is about a 15 - 20 min walk. Back home now with my feet up and a cuppa. 

I have also found this time that my vein where the canullar was is bruised! And a bit sore. Hoping this dies down before my next cycle!

 

hope all you lovely ladies are ok and are able to enjoy your weekends.

 

lisa xxx

Member

Re: August 2019 Chemo Starters

Hi everyone

 

Spottycotty - so pleased that you enjoyed your day at Wembley with the family - I am sure you were tired but it would have been worth it.  Good plan re the breakfast buffet - I hadn't thought of that but you are absolutely right and I am glad the hotel looked after you well.  We might be having a couple of nights in a hotel in November so will bear that in mind.  I am also delighted you have been too busy to be on the forum - I am sure thats how it should be.  I must admit I am leaving the first week - 10 days free and then putting things in the diary for the last bit before the next cycle as certainly my experience so far is that I feel pretty much normal during that time.

 

Re the cold cap - have you looked on the Paxman webpage (if you are using Paxman) and their Facebook group?  It seems that it does vary in terms of success re hair loss - mine is looking dreadful and I have a bald patch on the top of my head which is difficult to cover hence today I am practising wearing my wig!!  I feel sorry for my poor husband who has to look at it more than me bless him.  Yes, looking at the webpage once we are on Docetaxel its 20 mins afterwards not 1.5 hours and apparently its worth persevering as it does stimulate quicker hair growth afterwards.  I think I probably will although I have not suffered with it as much as you.

 

Blackcat - sorry to hear you didn't get your MRI - slightly bizarre reason but I guess these things happen!

 

Hope everyone is OK and will be able to enjoy the nice weather that we have been promised this weekend.  For me, the third dose of FEC in three weeks will be a massive point as its half way - I guess some of you are already at that point which is great - don't forget that even I (delays not withstanding) will have finished my last dose before the final of Strictly Come Dancing which is on Dec 14th - thats keeping me going!!  Love to all xxxxx

 

 

Member

Re: August 2019 Chemo Starters

Hiya everyone,

 

So sorry I haven’t been on here, I haven’t got a good excuse, I’ve just been out socialising while I can 😆

 

Wembley trip went really well, we got up real early and travelled down so by the time we got there I was tired and felt a bit dodgy. I had a micro sleep, had a bowl of chips and a tonic water and felt like a new woman! 

Managed till 11pm so I was pleased with that.

Wolvesgirl...reference the food ... I just rang the hotel beforehand and explained I was on chemo and I couldn’t eat a buffet breakfast. They reassured me that they would cook my food fresh etc which they did, they were very attentive actually. 

I also made sure I didn’t eat from the street vendors too. 

So glad that you’re doing well this time round, I too lost a lot of hair this 2nd round, it’s does look thin and lank so I’ve been wearing my wig if I’m going anywhere nice but it’s still nice to have hair when I’m in the house. 

I will cold cap again on Tuesday but it was really painful last time so I’m dreading it to be honest. It’s my last EC before moving in to docetaxol, I’ve read somewhere that you only need to keep the cap on for 20 mins after this rather than the 90 mins on EC. Not sure if that’s right or not. 

 

Glad everyone else else seems to be doing well, I’ll be glad to say I’m halfway through after Tuesday though, just the thought of it makes me nauseous!!!

 

Anyway, take care everyone xxxxx

Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

💪💪💪🥊🥊🥊🥊well done wolvesgirl ❤️❤️No 2 big fat ✅ yehhhh😁😘💕💕✨✨Shi xx

Member

Re: August 2019 Chemo Starters

Hi Lisa,

so ur starting 12 weeks of Paclitaxel soon....  i thought the same as you,  you dont get a chance inbetween to recover a littlebefore you have the next one.

it is doable once your routine is in place.  I found that days 3-5 were my worst ....  fatigue, just slight nausea, headache and bone pain in knees, hips and back.   Sounds awful doesnt it but honestly once you get used to it and know what to expect each session you just kinda get on with it.

just do what suits you for your dodgy days....

i had a PICC line put in as could only use one hand for the cannulas and was getting real sore.

 

you will be surprised once you get the first couple out the way that it becomes your normal routine.

i used to have myPICC line flushed n dressing changed,  then they'd take my bloods on wednesday and my chemo on the friday.

 

let me know how you get on wont you and anything else you wanna ask just ask..

we all handle ourtreatments in different ways and se prob wont be the same as other people.

keep strong,  positive and look FORWARD and not back.

minimad xx 💖💖   (ps.  I'm Triple Negative )

 

 

 

 

 

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

Good to hear that you have had your second FEC treatment, and that you are feeling OK so far - long may it continue!  I hope that everything will go really smoothly for you on this cycle.   

 

I am just back from the hospital too, after having my first review of my two EC chemo cycles with the oncologist.  I was also booked in for a breast MRI straight after the oncology appointment, but this had to be rescheduled for next Monday because the oncologist was running 70 minutes late - apparently she had been poked in the eye this morning (by her toddler, not a patient) and had spent the first part of the day in A&E.  I move on to a new chemo regime next week (docetaxel + Herceptin + Perjeta) for the final four cycles, so am a bit nervous about the side effects of this new combination. 

 

I hope that you will have a good rest of the day, and that any side effects will stay away.  I hope that all on the thread, whether having just had a treatment or preparing for the next one, are as well as possible and able to enjoy some fun things in life every day.  Each day is one more step towards the end of our chemo, and we are all getting there slowly but surely!

 

Blackcat xx

 

Highlighted
Member

Re: August 2019 Chemo Starters

Hello ladies

 

Hope everyone is ok and not suffering too many side effects at our differing points of treatment. I have just got home after my second FEC - ok just now but very early in terms of nausea.  Feeling positive that this cycle will be better than the last.  Still cold capping but hair seriously coming out so not sure about it’s effectiveness really. To be honest I know I have a lot less hair but not sure the casual observer would. However if it doesn’t slow down it will all be out within the week!  I don’t mind the cold cap - it’s not painful at all, just takes a long time. 

 

Looking forward to hearing your news. Xxxx

Member

Re: August 2019 Chemo Starters

 

 

Hi ladies

 

iv had trouble trying to get on here the past couple of days. Not sure if anyone else has? Anyway back on now! Hope everyone’s ok and the Wembley trip went ok?? Im now 4 days post 2nd EC and feeling ok 🤞🏽just very tired.  Becki our treatment sounds very similar I’m having EC for 4 cycles but mines every 3 weeks.. I’m then going onto 12 weeks of Paclitaxel which I’m also worried about the change and different side effects that will occur 😫 also the fact that it’s every week seems a bit brutal! 

mini mad any info or advice you have regarding this would be amazing! And I’m so pleased your through it now 😃👍🏼 

 

Lisa xxx

Member

Re: August 2019 Chemo Starters

Hi BeckyDixon,

 

jumped in from June chemo thread and moticed that you're starting Paclitaxel soon.

i had 12 x weekly Paclitaxel which i finished 3 weeks ago 🤩🤩🥳🥳 so if i can offer any advice/info or tips please ask.

good luck  mini mad xx 💖💖

Member

Re: August 2019 Chemo Starters

Happy Monday all

 

Hope everyone has had a great weekend - looking forward to hearing about the Wembley experience. It seems we are progressing along this road - changes in chemo etc - which is great - we are that bit nearer to finishing what I am finding to be a pretty unpleasant experience.  I am much better after my admission - still a bit breathless on exertion but I think that is partly my hard won fitness going out of the window!  Sadly the 2kg I lost in hospital are pretty much back on - not much affects my appetite!!

 

I am meeting my gym pals for coffee tomorrow so might do some exercise while I am there - not sure I am up for Zumba just yet but a gentle bike ride whilst watching Homes under the Hammer might be just right.  Also walking with a friend tonight if the rain holds off which will be so good for my wellbeing.  Take care all.xxxxx

 

 

Member

Re: August 2019 Chemo Starters

Hi All,

 

Hope you've all had a lovely weekend! Wolvesgirl, really glad you're feeling back on top of things and hope you have some good days this week before cycle 2 kicks in and that hair holds on there! Blackcat - I'll be moving off EC after my next dose and onto paclitaxel and it's scary to think of tackling a whole new thing, but I'm hoping what I've heard about EC being the most beastly one is true.

 

Lisalou - with you on the wigs blowing away fear - I'm doing a little bit of work tomorrow with some kids and I'm going to double up with a beanie and a wig as I really don't want to have it knocked off mid way! But have ordered a few new wigs today (getting obsessed...) and going to try facing the fear this week as don't want to spend the months once the radiators go on sweating under double headgear!

 

Spottycotty - hope Wembley was amazing! I reckon it's so important for us to try to manage to do the stuff we can around this dastardly chemo for our mental wellbeing.

 

I'm feeling a lot better after my downbeat post earlier last week, frustratingly was up last night with vomiting (first actual sickness) and diarrhoea, and was a bit worried as my picc line entry point was sore when the dressing was changed on Friday (so much for me saying it has been a breeze!) so feared it was an infection, but the chemo line nurse said that as my temps are okay, it's probably just coincidence and just my body suffering from cumulative impact of the chemo, yay! But made it out to play in a local fete with my ukulele group this afternoon, and hoping to keep busy this week and keep my mind off EC 4 this Friday (although still going to talk about a lowered dose at my review)

 

Wishing you all a good sleep and a lovely Monday ahead! xxx

Member

Re: August 2019 Chemo Starters

Hi to all on the thread,

 

I hope that everyone is having a good Saturday!   Spottycotty - I hope that your Dad has a great 70th, and that you all enjoy being at Wembley.   Wolvesgirl - glad to hear that all is now good again with you, and that you will hopefully be able to have your second treatment next week.   Lisaloo - I hope that the nausea is staying well away after your second EC, and that you are not having any other side effects. 

 

I am on Day 11 after my second EC, and feeling pretty much as normal apart from an annoying metallic taste in the mouth which comes and goes.  I did feel a little more queasy than in the first cycle at some points during Days 6-8, but thankfully this has subsided.  It was not bad enough for me to have to take either of the two types of extra anti-sickness meds provided by my unit, as I found I was able to deal with by making sure I was eating small meals regularly and drinking peppermint tea.

 

I have a review with my oncologist of the first two EC cycles next Thursday, and then I move on to a new regime (docetaxel/Herceptin/Perjeta) in the following week for the final four chemo rounds.  I feel that I have only just managed to get used to the EC treatment, so am nervous about a whole new regime with new side effects will be like.  Still, it has to be done, and I’m sure I will adapt to it - we don’t have any choice once they have pumped the drugs into us, after all!

 

Good luck to all having treatments or appointments in the next week.  In the meantime, I hope that everyone has a relaxing weekend.

 

Blackcat xx

 

 

Member

Re: August 2019 Chemo Starters

Hi Spottycotty

 

Wow - going to Wembley, thats fantastic.  Well done you - I hope you have a wonderful time and that your dad enjoys his 70th.   I have only been to Wembley to see Take That a few years ago with one of my stepdaughters which was fantastic.  I am curious about the hotel - you said that they know you are on chemo and are sorting your food - could I ask what that entails?  I don't think it would occur to me so I was wondering what I am missing!!

 

All good here - finish antibiotics today thank goodness and then hopefully cycle two on Thursday.  Spent the morning picking up apples fallen from our one extremely prolific tree - none worth saving sadly but there are hundreds more to come down.  Hope everyone is OK and enjoying the weekend. xxx

 

 

Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

Lisaloo, wolvesgirls planned it with that 2nd wig hasn’t she if case 1st one blows away 😳a lady I met used wig tape/excuse the use of this word tit tape and stuck her wig onto her head. Spottycotty, something quite a few of us mixed up was something called thieves oil and had it on tissues while out so we could sniff that, just google recipes, don’t know if it worked but a lot of us had it. Also pack antibacterial gel in your bag and use all the time and again excuse the detail, hover above loo or put paper on the seat. And have an amazing weekend celebrating your dads 70th ❤️ Wolvesgirl big ❤️To you, keep getting the 2-3 litres flowing through your system daily ❤️💕💕✨✨Shi xx

Member

Re: August 2019 Chemo Starters

Hi everyone,

 

lisaloo, you made me laugh saying you didn’t dare get out the car 🤣

I’ve still got my (thinning) hair at the minute but decided I’d wear my wig the other day, I was meeting a friend for breakfast so thought I’d just turn up and see what she’d say.. anyway..I felt like I was on an undercover mission in disguise !!!! Honest, I was so scared, anyway, she thought I’d been and had a blow dry 🙄😆 so felt better after the first outing. 

 

Wolvesgirl, so glad you’ve got a plan in place now and you’re feeling more positive about things.

 

my veins are still sore, I’ve rang the hospital and they keep telling me I’m ok!! I’ve bought a heat pad for it so hoping that helps.

Sooo, you’re all going to think I’m mad but..,my dads 70 tomorrow and we are off to Wembley to see England play 😬

setting off in the morning and coming home Sunday so it should be ok, told me not to mix with crowds but Wembley stadium isn’t that crowded is it??? Seriously though, hotel is right next to the stadium, hotel are aware of chemo and are sorting my food etc so I thought I’d be so gutted if the family are there and not me.

ill let you know if I survive 😷

 

Anyway, I Hope everyone manages to enjoy their weekend as much as we can do xxxx

Member

Re: August 2019 Chemo Starters

 

 

Hi Wolves girl. 

 

Glad your feeling better and a bit more positive about your treatment 👍🏼 Also great you have a wig at the ready just in case! 

 

Im back home now after my 2nd EC. Had a stronger anti sickness before the chemo this time as I was sick on the evening after the first lot. Iv also got my anti sickness bands on that others have recommended so fingers crossed they do the trick. 

Iv also got some stuff for constipation to take 👍🏼😃 that’ll keep things moving a bit better hopefully. 

My wig has thankfully remained on my head! 😂 it’s windy again today! and I walked to the hospital as it’s not far from my home..the fear was there it might blow away 🙈 Think I’m getting a bit more confident it won’t and a couple of the ladies on the ward today didn’t even realise I had a wig on!!!

 

hope everyone is ok and have a good a weekend as possible xxx

Member

Re: August 2019 Chemo Starters

Morning all

Hope everyone is OK - Lisalou - I hope your wig didn't blow away!  I went and got mine this week in case my hair gives up the ghost - I am really pleased with it (actually got two whilst I was there so bought one of them) but I am not using it at the mo as I don't want to do anything to jeopardise my own hair which so far is hanging on in there.  It doesn't look great but its mine!  I am washing it twice a week in lukewarm water and a natural shampoo, drying with the hairdryer on cool and held far away from it and putting a leave on conditioner through.  I also bought a silk pillowcase which is lovely and cool.  I feel a bit happier now I have the wig in reserve just in case.

 

Spottycotty - my vein was (and to an extent still is) sore - I forgot to mention in yesterday in clinic so it can't be that bad but I will be unwilling to let them use that vein next time.  They managed to avoid it when I was in hospital as I had to have several cannulas.  

 

So, update re me.  Went to clinic yesterday - didn't see the consultant but had a long chat with the CNS.  The consultant has reduced the dose of epirubicin for next time which at the moment is still planned for next Thursday, bloods being well on Weds.  Apparently my gamma GT shot up whilst I was in - the effect of the chemo on my liver so they need to check that.  Normally I would expect that in a drinker - and I have been alcohol free for a month!!  So I will give it another shot, she reckons it wont happen again but can't say that definitely, but hopefully with the lower dose it should be fine.  So I am feeling a bit happier about it - now I feel back to normal I am planning things in principle for week three of the next cycle so at least every three weeks (and maybe more if I feel like it) I can do nice things with friends.  

 

Think thats all my news - hope you all have a good weekend and can do whatever you want to depending on how you feel.  xxxxxxxx

Member

Re: August 2019 Chemo Starters

 

 

Hi ladies 

 

Sorry to hear that some of you are struggling but we’re all here for each other so don’t feel bad about coming on to vent your frustrations.. although family and friends are there for us we there not going through what we are so don’t really understand how we’re feeling. 

I had my bloody done yesterday ready for my next EC tomorrow, can’t believe it’s come round so quickly! I’m every 3 weeks Becky so I suppose my body’s got longer than yours to recover before my next one. My hair started coming out by the handfuls 2 days ago and felt like straw 😫 so Iv just been for the shave this morning and am now wearing my wig. Just sat in the car wondering if I dare get out as it’s a bit blustery here today! I’m a bit concerned it’ll blow off!! 😳😂 

 

take care ladies and I hope those that are struggling feel better soon.

 

Lisa xxx 

Member

Re: August 2019 Chemo Starters

Morning all! 

 

Apologies, a bit of a whingey post today but just wanted to vent off with a a big BLARGH to someone other than my long suffering husband! I'm on day 7 post EC 3 and I'm just not getting the lift in SEs this time, when on the last few cycles I was on the up by this day, but I just can't shift things. My temps are fine, and my bloods were a-okay on the last two, but, boy, this is undoubtedly the most ill and useless I've felt, and it's been a bit heartbreaking not to be able to do the start of term school runs this week. I wonder if it's the dose-dense routine (anyone else on the fortnightly EC?) meaning the SEs are just getting cumulative and my body's not recovering, but I'm SO tired, my stomach is killing me (I'm a long term IBS sufferer and the chemo meds are messing with me badly - could hardly eat yesterday which is weird after being constantly hungry on the last cycles) and my chest and bones are aching. Sorry to be downbeat, I'm normally a VERY positive gal and trying to find my mojo back, but I think feeling a bit dwarfed by the thought of another blast of this next Friday, and I really wanted to get back to work next week! I'm wondering about asking for a dose reduction or even a delay of a week (although that would tip me away from the Christmas finish) for my last EC, although not sure they'll do this if my bloods are holding up...

 

Sorry, not huge point to this post just needed a rant - I know you're all going through the same ! I might try to cheer myself up with more wig shopping! I found an old dramatic blue mermaid wig in my fancy dress box that I used to wear when running 'under the sea' disco parties for kids (Actually, however bad I feel today, knowing at least I don't have to organise 30 sugar hyped up 7 year olds into a game of 'under sea disco limbo' whilst trying to retrain my dignity in a flimsy mermaid costume *not entirely suitable for wearing in front of the dads*  make today feel a lot better...!). I've found with the wig teemed up with a beanie and a lot of black eyeliner I'm channelling a bit of Avril Lavigne teenage rebellion today  (well, if you ignore my baggy eyes that look at least 70 years old!) so I might see if I can dig out my DMs and at least manage a surly stomp round the block and surprise my neighbours! But the wig has seen better days and is losing a lot of hair, so I'm wondering about upgrading a little! Mind you, I'm now at 4 proper wigs (not including the balding mermaid one) so I fear this could be getting a bit of an obsession and not the most sensible use of finances (particularly as the wigs are collecting in company with my growing scarf and turban collection!). 

 

BTW Spottycotty, my Picc line remains a breeze - it is a bit weird knowing it's in there, but it's not caused any hassle at all (including on my good days being able to play the cello around it and manhandle the kids without it getting knocked or pulled)

 

Big love! Hope you're all handling things more graciously and less grumpily than me Smiley Happy

Member

Re: August 2019 Chemo Starters

Do you know though, the PICC line is the thing I have not wanted from day one!!

im terrified I will pull it or something!! 😩

Also, they don’t really have trouble putting the cannula in, it’s my veins that are bruised from the chemo that’s causing the trouble. 

I rang today and they said it will get better, it’s been a week so hopefully it will improve before the 17th sept which is my next one...

i don’t want any delays but I wouldn’t be able to let them go near it at the minute.

 

Thanks for your advice, I’m going to get heat pads tomorrow ...

Member

Re: August 2019 Chemo Starters

Hi Spottycotty ,

 

i also had problems with the nurses putting my cannula in.

it got so bad and i got sooo stressed that it was suggested i have a PICC line put in.

which i did have done....  no more painful cannula's , i was having my treatment every week and everything was done.  Chemo , bloods n pre meds through my picc line 👍👍

 

if you decide to have this done n you want to know anything about it just ask..

mini mad xx 💖💖

Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

I got my microwaveable heat pad from Sainsbury’s, it was one of those ones that you can use for neck, it stretched out lovely along my arm over the veins 👍if you are switching to t is softer on veins it was the fec that made mine look like a shark had chomped me 😳💕💕✨✨Shi xx

Member

Re: August 2019 Chemo Starters

Hi Spottycotty,

 

Sorry to hear that you are having trouble with your arm and veins after the treatment, and I hope that this clears up soon.  It seems to depend so much on individual nurses and how they do the infusion - the nurse for my second EC put my hand in a really hot basin of water for about 10 minutes and then got the cannula in straightaway with no problems, while for the first EC I was given a lukewarm basin for about 30 minutes, then a lukewarm hand “warmer” which didn’t seem to do much at all, as she still still had trouble getting the cannula in.

 

I hope that your helpline can give you some advice, or perhaps offer your the option to have a PICC line or similar if that would be appropriate.  Hopefully it will not affect your next treatment at all.

 

Take care, and I hope that you (and everyone on the thread) have a good day.

 

Blackcat xx

Member

Re: August 2019 Chemo Starters

Hi Shi,

 

I did actually dip my arm in hot water and they used a heat pad as chemo was done.. the first time... the 2nd one she didn’t and she gave me really cold chemo too, I felt the shringe as she did it...so painful. 

Anyway, it’s a week on and veins feel very bruised, I can’t wear my watch still, I will ring today to see what I can do as I’m worried it will affect my next round.

Microwavable pads sound lovely though, I swear my veins feel cold still sometimes.

 

Thankyou 💝

Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

For sore arms after chemo one of those microwave heat pads 👍really helped and also rubbed ibruprofen cream on too, but check with units this is ok so nothing interacts with chemo or meds. Your unit might make you dip your arm in warm water bucket before canulating you and also they can provide hot pack for your arm while chemo is being done 👍hope this helps 💕💕✨✨Shi xx

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

Great news to hear that you are back home, and that you are on the mend.  Take it easy and give yourself time to recover.  I hope that the discussions with your oncology team on Thursday go well - I’m sure that they will be able to find a suitable way forward for you, as they must have to deal with treatment setbacks and delays all the time.  We are all on a long and sometimes uncertain treatment road, so we will be jogging along here with you for some time to come.  However long it takes doesn’t matter - we will get there in the end.

 

I hope that your hair holds on!  Mine is just a memory these days, but I am getting better at wearing my wig with confidence outside and not worrying so much that it is going to fly away.

 

Blackcat xx

 

 

Member

Re: August 2019 Chemo Starters

Dear friends

 

Now had a chance to read through what has been happening to everyone over the last few days - generally it seems that everyone is doing well which I am so pleased about.  Varying positions re hair - will let you know how mine goes as I about to enter the danger period in terms of hair loss!!   I am now home and I am sure will continue to improve - the hospital was fantastic but they can't do anything about pump and monitor alarms going off all night which became a little wearing (and I can sleep on a clothesline)!  I am still a bit chesty but apyrexial and on oral antibiotics so on the right track.

 

I will let you know the outcome of my discussion with the oncology team on Thursday - if I continue with chemo it will probably be delayed and as I am way behind most of you anyway I will be even further!  By the time I finish you will all be well on the post chemo road!  

 

Thanks again for all your support and hope you all continue to do well.  xxxxxx

Member

Re: August 2019 Chemo Starters

Happy belated birthday Lisalou - glad you had a good celebration and that your hair was still around!  Here's hoping your next cycle goes well.  Thanks for the good wishes during my little diversion into hospital this week! xxx

Member

Re: August 2019 Chemo Starters

Hi Spottycotty

 

Sorry to hear that you have a sore arm - my vein was, and still is, sore from my first cycle - I am assuming it will improve over time, there is nothing to see in terms of inflammation but its very much there.  

 

Re your hair - I smiled when you said crap hair is better than none - I would agree with that!  I am not at first shedding point yet (day 13) but am being vigilant.  It is not at its best to be sure but I am prepared to keep going with it.  I didnt mind the cold cap first time, will be interested if its painful second time if I continue.  I am going to try on the wigs I ordered tomorrow so I will feel a bit safer when I know I have a fall back position if it does all fall out. xxxx

Member

Re: August 2019 Chemo Starters

Dear MJB

Thank you so much for your honest and very helpful message.  I agree with everything you say except I am sad that you feel angry and disappointed - I think to take the decision to stop is a very brave one and I commend you for being decisive and doing so.  

 

Sadly, I don't have the option of Letrozole so I have to consider my options slightly differently.  I won't make a snap decision - certainly when feeling so ill it seemed very clear to me that chemo was not the right thing but now I am feeling better that is not the case.  Having said that I still might decide to stop but I will have a good chat to my oncologist on Thursday and will be advised by him.  

 

I am sure that my next cycle will be delayed in order to make sure I am completely well before carrying on if I do which I am really upset about as it will mean that I won't finish before Christmas which was a bit of a goal.  Still I know its a safety thing and will do as advised.  The lack of control through all this is a real problem for me!

 

Thanks again for taking the time to be so supportive and to share your valuable experience.  All the best to you xxxxx

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl, I’m so sorry you had such a terrible time first round, sounds Like hell, it’s bad enough as it is! Sending my love and hope the docs can come up with a plan for you, so you at least feel like you have an option to continue or not. 

 

Spottycotty, I’m the same with cold cap, it was harder this time and my headaches afterwards were so intense and lasted days. I had my 2nd round of FEC80 on Thursday (day 25). No Hospital this time, I spoke to docs and they gave me Emend and patch prior to chemo so I had plenty anti sickness in my system. I was still sick and nauseous but nowhere near as bad. I am much more tired this time, does anyone know if it gets progressively harder to bounce back from after each treatment?

 

 My hair was thin to begin with and much thinner now...bloody horrendous, my heart just goes out to everyone losing their hair....I just feel mine will be out any day now and it’s so hard to face. It’s like the last part of a healthy normal you being taken. But suppose it Shows the treatment is doing what it should. My friend suggested shaving it but can’t do that yet! Think I’ll hang onto my last weak strand!

 

sending love to everyone, another day down is another day closer to finishing this! Thanks so much too to lovely ladies adding from other monthly threads, your experience and advice is invaluable xxx

MBJ
Member

Re: August 2019 Chemo Starters

Dear Wolvesgirl

I am mbj from February 19 thread. I too had neutropenic sepsis on my first round of FEC. Believe me I know how ill you have been feeling and how weak it leaves you. I was in hospital for five days. I had IV antibiotics and oral ones for two weeks after I came home. 

From reading your post I saw that you are unsure of whether to carry on with your chemo or not. I made the decision to stop chemo after my first round. I was not very fortunate in my oncologist as he was not particularly helpful. My BC is ER+ so I have been able to start taking the hormone medication Letrozole. I understand you are triple negative so don't have that option.

Looking back now to February my advice to you would be to take your time in making a decision and ask lots of questions about the benefits of the chemo to you and what do they plan to do to keep you safe next time. 

I am really not sure if I made the right decision, of course now six months later it is harder for me to remember how sick I was. I was and still am angry and disappointed in my body and my bravery that I could not face another round of chemo. 

Although we all have BC we are all unique and each one of us is making life changing decisions every day at a time when we are most vulnerable. I hope you have someone who will go to your oncologist with you, so that you can both ask questions and only then can you decide what will be the best way forward for you.

I hope you are feeling better and will be going home soon. 

Kind regards

Marie. 

Member

Re: August 2019 Chemo Starters

Hi everyone,

 

 Wolvesgirl, so sorry to hear of your rough time, I can totally relate to your feelings of not really wanting to carry on as that is how I felt on round one when I had to go in with nausea, nowhere near as bad as you!! I can remember thinking that there was no way I could manage another 5..,

Really hope you get a plan sorted with your Onc.

 

Im now on day 4 of 2nd AC.  Had a rough night again the first night, wretching every hour throughout the night but felt bit better by the morning, I’ve had fatigue earlier this time but I’d rather have that then feel sick all the time!

I’ve got a really painful hand and arm from where the chemo went in though, it was so painful at the time, the nurse was pushing it through so fast and it was freezing.. anyway, went in Friday and the dr had a look and said it was fine and to keep an eye on it, still painful today so if it hasn’t improved tomorrow I think I’ll ring again.   Anyone else had this??

 

My hair is still here (for the time being!!) I’ve cold capped both times, I’m day 26 from first treatment) it’s sheds so much st the slightest touch, I have no bald patches as yet but it’s very thin and lank, I can see me getting fed up of it if it doesn’t go by itself, but then I think crap hair is better than no hair??? Saying that, the cold cap was so painful the 2nd time round, I’m unsure at the minute if I can face it again!!!

 

Keep well everyone, chin up Wolvesgirl, you’re hopefully coming out the other side now 🤞🤞

Member

Re: August 2019 Chemo Starters

 

Hi Shi 

 

thank you for the birthday wishes 😊 it really has flown over and I certainly intend to make the most of this week until Friday. It’ll be another one ticked off and I suppose I can look at it as half way through the EC as I’m having that for 4 cycles. Then onto the 

Pacitaxel. 

 

Lisa xxx

 

Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

Belated happy 40th for yesterday lisaloo 😘😘glad you managed meal and your hair celebrated with you too 👍your 2nd one has Coe round quick now, enjoy this 3rd week, we always got excited getting to week 3 if that’s not too nuts but we were focused on ticking them off, I had postit note up in the kitchen ticking them off and every time I passed the bell in the unit, I’d sat to it, i’ll Be ringing you soon 💪💪💪big ❤️❤️To everyone 💕💕✨✨Shi xx

Member

Re: August 2019 Chemo Starters

 

 

Hi Ladies 

 

wolves girl.. sorry to hear your still in hospital like the other ladies have said it’s not an uncommon thing and hopefully they can get your chemo tweaked for you. I’m keeping my fingers crossed for you that you can get back home ASAP. 

Glad everyone seems to be doing relatively ok, everyone’s side effects are so different and all of us don’t know what the next day is going to bring, it really is a case of taking each day as it comes. My next EC is on Friday...it seems to have come around so quickly! It was my birthday yesterday (40 th 😫) and Iv enjoyed a weekend of eating seen as though I can’t drink! Meal out last night with the girls and Sunday dinner out today with my family.. my hair has stuck around for the occasion too although I’m expecting it to start shedding anytime now.. I’m on day 16 post EC and going off what you ladies have said it could start happening over the next few days. 

 

Big hugs to all.

Lisa xxx