September 2020 Chemo Starters

[veestar]

@Strangely upbeat 

I didn't shave my hair as figured growing from scratch would take longer when the time comes but do what you feel happier doing. I reckon I have lost 80 % of my hair now but I have a few long strands that when I wear a bobble hat hang down for effect of hair😂

[veestar]

Love the name of the wig! Genuis. Made me LOL in this bonkers time.

@Phoebe55 

[Carmen Verandah]

Hi SU

Good luck with the radiotherapy, I’ve still got 2 more chemos and then 5 days of radiotherapy, but it’s not been arranged yet.

Unfortunately my remaining nipple is deficient in size apparently 🙀. Anyway, one day at a time 😊. 

[Strangely upbeat]

Hi Carmen 

I have to have radiotherapy, that’s starts in March.

Not sure about nipple surgery yet, I guess my consultant will be in touch after the radiotherapy.  They have talked about using my other nipple as it’s a good size apparently 😂

[Carmen Verandah]

Yeah SU, great that you have finished chemo💥🌈🌟! They don’t have a bell on my unit 🙃. Do you need radiotherapy or are you done now?

Love the mug and T-shirt design, great that you have done that 😊.

Can I ask about your nipple (!)? I found someone who makes prostheses but she usually makes matching pairs rather than just one and because of covid and because she was recovering from breast reconstruction it didn’t go anywhere but she does know someone who does tattoos and temporary tattoos. My surgeon said I could have a tattoo or a prosthesis on the NHS but not for a year after my radiotherapy and I’d quite like to have one a bit sooner. 

Carmen 🙂

[Strangely upbeat]

Big day today, last chemo session, picc line taken out and I got to #ringthebell I had an audience of all the A6 staff which I wasn’t expecting and it was more emotional than I expected it to be.  Whilst on my journey I have designed some merchandise, 25% of all sales is going to @breastcancernow and 25% to @maplescancercare which is a local cancer support charity.  If anyone would like to share the importance of checking your breasts and help raise funds for these amazing cancer groups, please click the link:    https://www.richardedmond.co.uk/collections/coming-soon-dick-ed%c2%ae-clothing-collection

Over £300 has been raised so far 😀
#kickingcancersbutt #cancersucks #breastcanceraware #bepositive

 

 

 

 

[Phoebe55]

Hello again! Hope you're all doing ok right now and apologies for being late to reply. Having been so disrupted with everything that had gone wrong I'm delighted to report I've had another 3 rounds of Taxol without anything new kicking off. Such an odd feeling to come out of the oncologist's office last week without having anything new to add to my list! 

I hope everyone is keeping as well as possible. I feel so behind schedule on things having lost a month. Buckets of good luck to everyone in the months ahead and thanks for being so supportive.

Pxx

[Carmen Verandah]

Hi Phoebe

You have been so unlucky, I really feel for you and hope things go more smoothly from now on. But welcome to the unusual facial hair club. 

🙀

[Carmen Verandah]

Hi MaryJane

Sorry to hear you contracted covid and hope it has not made you feel too rough.

Good luck for your surgery.

👍🏻💐

[Sarah50]

Hi Phoebe, 

im soo sorry to read your post, do hope you feel better soon, if it makes you feel better Im like you with my eyebrows and eyelashes, very patchy, lol.

Well my new year didnt quite start as I thought, I ended up in hospital, with very high temperature and feeling generally horrible, they thought it could be a chest infection, but turned out to be covid, got it confirmed on my birthday, out of hospital now, but totally wiped out with it, but no cough, and temperature is down, and in isolation. As I said to a friend, you couldnt make this up, but Im lucky only got a mild form.

Well you take care, and make sure you get well xx

[Phoebe55]

Hi folks. Long time no post! I've had more problems with reactions so I just sort of went off and hid:   I think it couldn't quite believe more things were going wrong after thinking things were going well on 3 weeks of Paclitaxel.

I've had a massive psoriasis flare up which the oncology team thought was a reaction to the chemo. But after 3 weeks of skin horrors a new dermaologist reckons it could be one of my other meds causing it, so I'm on oral steroids to try to clear it. I've  missed 3 weeks of Paclitaxel so far and it's stressing me out no end, so I've also got some Diazepam! 

I hop everyone else is doing ok: I've now got the world's patchiest eyebrows and zero eyelashes left too. Such a good look 😉

Pxx

[MaryJane]

Hi Carmen, good to hear it's going well Happy New Year to all.

I have no eyelashes (makes for very watery eyes) and left eyebrow virtually gone, right hanging on more. Interesting look.  Also gave in to hair clippers as despite cold capping very sparse  hair left and with hairdressers now shut again decided better to take control & stop looking like slightly mad scientist.

Spiked temperature at new year & chemo emergency team picked up I had covid. Where did that come from!!! Have been shielding. Did not see anyone except immediate family at Christmas all of whom are well. Shows how contagious this thing is. Thankfully seem to be ok but surgery delayed a week.

Stay positive (except for covid when stay negative!!).

[Carmen Verandah]

Happy New Year September chemo starters.   Congratulations to those of you who have  finished your chemo, and wishing you all the best going forwards.

The new lockdown is very depressing  but it does sound very grim for the hospital staff so I understand why it is necessary, and am trying to stay positive. 

Has anyone heard when they will be getting the new vaccine yet?

I’ve got 7 more weekly doses of pacitaxal to go and should be finishing by the end of February, which doesn’t seem too far away. I’ve got 3 eyelashes left and patchy eyebrows which isn’t the best look, but I’ve been feeling okay, no injections, steroids or antisickness medication to remember to take, which is great.

It would be great  to hear how you are all doing. 👍🎈🌞

Carmen 

[Mrs Kettlebell]

Brilliant news Sarah50! Congratulations on completing chemo. Onwards and upwards for 2021!. 

I had my last chemo last Tuesday. My PICC was removed the same day which felt like a big milestone. Although I’m feeling pretty ropey with post chemo effects right now, I’m taking solace that this is this is the last cycle and things are improving all the time. 😊 

Post chemo scans tomorrow, and surgery in January followed by radiotherapy. Any mastectomy related advice from those who have already had the op is most welcomed! 

Thanks again to this group for sharing advice, news and updates - it’s really helped me especially during these strangest times. 

Echoing Sarah’s words - Merry Christmas to all, and for those getting close to the end of your treatment, I too hope all goes well. Here is, indeed, to a fantastic 2021 for all of us xx

[Sarah50]

Evening,

Well last chemo was thursday and also had PICC line taken out, so feeling ontop of the world at the moment. Had appointment with oncologist on tuesday and also having the 5 day fast forward, plus 5 day bust, which is localised to tumour area. Been given my letrozole to start in new year... 

Was very emotional on thursday once I got back to my car after ringing the bell, its been a rollercoaster of a ride this chemo journey, now time to enjoy xmas and have time away from the hospital, which for the last 6 months has been such a big part of my life.

Merry Xmas to you all, and for those getting close to end of treatment, hope all goes well, heres to a fantastic 2021 for all of us xx

[MaryJane]

Just had it confirmed my last chemo good to go for Thursday & agree it's great to have that done before Christmas & will hopefully be picking up from tiredness etc just in time. Family have offered to cook the Christmas lunch instead of me this year which is lovely.

I'm then on to surgery which is penciled in for 13 Jan & will have a break from herceptin until after surgery.

Hope everyone is managing to plan their Christmas around treatment ok.

[York-75]

Hi Sarah50,

yes is it so exciting to have the last one in sight, isn’t it? Now fingers crossed it doesn’t come back, ever. 🤞🏻🤞🏻

I spoke to the oncologist last week, and I will get the fast forward radiotherapy which is just one ‘marking up appointment’ and 5 sessions. So all being well I’ll start a phased return to work in January. 
All the best for the last bits of your treatment, and Merry Christmas!

[Sarah50]

Morning, good luck for Wednesday, dont know if you feel like me, but its like Xmas coming early, cant wait for the last one to be over and done with.  Got my appointment with radiologist tomorrow, so also start in Jan.  wishing you all the best, and hope you have a lovely Xmas, and heres to a great 2021 xx

[York-75]

That is great news Sarah50!

I am having my last one on December 16th and then radiotherapy in January. I am HER2 and estrogen positive. 
I also have Herceptin for a year, injection 3-weekly, and then 5 years tamoxifen.

Feeling a bit like flu right now after the 3rd round, but in a couple of days it should improve a lot. 
glad it is working well for you, and good luck with the rest of your treatment! X

[Sarah50]

Hi York-75, lovely to hear from you.  Well Ive just had on Thursday my second round of Abraxane, and can say.. so far so good, no side effects at all, last week I was very tired, but this time all good. I have another 4 weeks of it, yes having it in low dosage, hence weekly, as had very bad reaction to T large dosage, just keeping my eye on the 17th of December, whic will be my last one, yeah!! then a break and radiotherapy in Jan.  Im ER+ HER2negative.

Wish you all the best on your journey and hope like me, you dont suffer too many side effects.  Take care xx

[Carmen Verandah]

Dear September chemo starters

I wondered how everyone was getting on with their treatment in this second lockdown? 

I’m now 1/4 of the way through, as I had my 4th EC on Wednesday, with 12 weeks of pacitaxal  to go, starting in December.  I also had my first dose of zolendronic acid for my bones, which I was a bit anxious about, but I haven’t had any side effects luckily. The nurses on the unit are great, especially the wonderfully named Elvis, and Nse.  I’ve got swollen ankles and feel pretty tired and I’m not sleeping too well. My hair is now very thin and patchy, not a great look, but I’m getting more used to wearing a wig. I’m taking it easy,  watching The Crown, and The Queen’s Gambit on Netflix, knitting and reading. I also made a decision to ring my friends and sons more, rather than just texting, which has helped me feel less isolated.

I found out the hospital will do my covid test on the same day as giving me the weekly chemo which is a big relief as it only means organising 1 set of lifts there and back each week. I hate the covid test but it has to be done. I’m feeling more positive with all the different covid vaccines being developed. Some good news at last.

Wishing you all well, and hope you are all doing okay.

🌞🎈🏵

[York-75]

Hi Sarah50,

I have popped over from the October 2020 thread. I am on Abraxane.

I was prescribed Abraxane instead of Paclitaxel weekly for 12 weeks, because Abraxane can be given 3 weekly, giving me 4 infusions in total instead of 12. The drug is purer and more expensive, and the aim is to have me attend hospital less often because if Covid. They applied to the cancer drug fund to pay for it.

im not sure why they are still giving it to you weekly, maybe so you can have a lower dose?

I understand it typically has fewer side effects than paclitaxel. I have had 2 rounds, I’m on day 7 after cycle2. 
Main symptoms for me have been tiredness and dizziness, in the first few days also flu like symptoms, some headache, itching and a bit of a rash. Symptoms eased with rest, paracetamol and antihistamine.

I hope you get on ok with it, I have it with a Herceptin injection as I’m her2 positive, and have had no serious reactions.

Good luck! 

[Carmen Verandah]

Hi September chemo starters

To Mrs Kettleball

Great news about your scan results, but I’m very sorry to hear that you have lost your mother in law. I hope the next couple of cycles don’t cause you too many more weird symptoms. It sounds tough thinking about having a mastectomy and how that is going to be, and the radiotherapy on top. I already had a lumpectomy and lymph node removal, so for me it’s more chemo, a week of radiotherapy, something for my bones and a drug for 10 years. It does seem a long road to recovery and I do get a bit low sometimes.

You sound very organised, I’m not really feeling the Christmas vibe yet, although my eldest son, who is an extra, is apparently going to be in the Sainsbury’s Christmas ad!

Hope everyone is doing okay, 🌻💐🐿

[Carmen Verandah]

Hi Sarah50

Hope the new regime goes well for you. I’ll be starting weekly paxitacel in December, definitely not looking forward to having to go in 2 days before for weekly covid tests. The hospital is about the only place I go to nowadays apart from the local shops, and walks in the park 😕. 

[Sarah50]

Hi Carmen, thanks, today I saw my oncologist, as lined up for my next session on thursday, well.. all things have changed, he has changed my chemo to Abraxane, hoping I wont have such a bad reaction and now also having chemo every week for 6 weeks, so a lower dosage. This came as a shock as I was 5 out of 7 sessions down with thursdays, now have another 6, never mind, just hope I can tolerate this better and dont have any more allergic reactions to it.  The good thing is that all will be over by the 10th of december, cant wait.  

is there anybody else in the group on Abraxane? on a weekly schedule? if so, how did it go?

thanks in advance and wishing you all well xx

[Mrs Kettlebell]

Hi Everyone

Am sorry to hear that many of you have really gone through the mill during treatment and hope symptoms have drastically improved and you’re all doing much better. 

I’m Day 8 of Cycle 4 - over halfway now. Midpoint chemo scans have showed no spread and considerable reduction in number and size of cancers, so the chemo is working and for that I am incredibly grateful.  

Getting used to the cycle of symptoms, although I do seem to have ‘Random One Time Specials’ alongside the usual complaints each time around! This time it’s twitching eyelids (!) and allergic skin reactions; cycle 3 was leg and feet cramp and a face rash; who knows what might come in 5 and 6! This stuff keeps you on your toes, that’s for sure.  Tummy problems still abound, but (fingers crossed) much less severe. The addition of one Movicol a day on days 1-5 has worked wonders (so far) at reducing the severity of constipation at the start of each cycle and diarrhoea later on.  Hair just about hanging on - still have around 60%, so thinner all over. Grateful that the cold cap is working as know this is not the same for all. 

Am normally fairly positive but now I’m over half way through Chemo, I feel quite low when I thought I’d be bouyed by positive scans Chemo and thoughts of being closer to the end than the start. I lost my beautiful mother in law to secondary breast cancer a couple of weeks back, and there’s no doubt that has made me think more about my treatment; I’ve also seen the breast surgeon about my mastectomy in the new year and suspect I’m more concerned about the psychological effects of this than I might have realised.  A chance mention of ‘might need radiotherapy after surgery’ during an Onc appointment has thrown me too. More treatment. And for longer.  Am grateful that they are throwing everything at this, but wasn’t expecting that (even though it’s fairly standard protocol). Need to put the big girl pants on and get on with it!  

As a side distraction, with last Chemo scheduled for 15 Dec, am madly prepping for Christmas as energy allows. With family scattered far and wide, it’ll be two if us at home. I have lists of lists. Shame the housework isn’t making it nearer the top of one of these right now!! Mr Kettlebell is coping admirably under the circumstances!

Sending warmest wishes to all - keep as well and and safe as you can. Thanks again for sharing your experiences, it really does help to know there are others in the same boat. 

[Carmen Verandah]

Hi Phoebe

You have really been through it. I hope your last chemo dose goes well and you tolerate the Taxol okay. Sending lots of positive vibes your way. 🌞x

[Carmen Verandah]

Hi Koukla

It’s really hard to stay positive sometimes, I’ve been feeling quite bored and weary. I’ve had 3 x EC, one more to go and then 12 weeks of Paxitaxal to look forward to, which seems like a long haul. I think Christmas will be very low key this year but I don’t want to disrupt the weekly chemo. I think we need to be kind to ourselves and allow ourselves to feel sad and scared. I’ve never been on a forum before but it is a great way to share how I really feel. I’m trying to be upbeat, especially with my 3 adult sons as I don’t want them to worry about me, but sometimes I want to howl! X

[Carmen Verandah]

Sorry to hear about your allergic reaction and leg pain and I hope you are feeling more comfortable now Sarah. Good luck going forward. X

[Koukla]

Sorry to hear you've still got ongoing issues Phoebe fingers crossed having a lower dose chemo tomorrow will help you get back on track.

Sending positive thoughts and gentle hugs to help pick you up.

Take care 

[Phoebe55]

Hello again! 

Koukla I'm with you about struggling to stay upbeat. Last week was so hard for me after being discharged: developed a blood clot in my left leg the day after and I just thought "oh **** what now?!". Normally I'm very positive about stuff: it just seemed so bloody hard and relentless and I'm not even halfway through the treatment. Had a really good chat with the doctor about chemo tomorrow though (the final AC and on a lower dose given the recent problems before 12 weeks of Taxol). I think getting this one out of the way will make me feel that I might be getting somewhere.

Take care everyone!

Phoebe x

[Koukla]

Hi All

Sarah that sounds pretty awful I do hope your starting to feel a bit better now and the pain in your legs has gone.

I'm due my 4th infusion of FEC on Monday and already getting worked up about it. I'm feeling like I'm running out of fight. There are many who have more severe diagnosis than I do and all in all I've been fairly lucky and I'm so close to the end of treatment but I just can't find my positive vibe anymore which isn't like me. I'm not sharing this with my family as they will only worry as they are so far away. Anyone else struggling to stay upbeat? 

[Shi]

Sarah please phone your unit about the leg pain and see what they say ❤️ Always best to check anything with your team, chemo can have all sorts of effects and everyone is individual, please check out with your team, you need to keep safe through chemo ❤️💕💕✨✨Shi xx

[Sarah50]

Evening All, Phoebe so sorry to read this, hope you are feeling better. 

Well I just had my first Paclitaxel round on Thursday, day of chemo and Friday all good, then Saturday came and all started to go down hill.  Woke up with a really swollen face, couldnt open my eyes, and mouth very swollen and to top it, the pain in my legs from my knees down was  and is unberable, nothing has or is touchig the pain. Managed to get the allergic reaction under control, but not the leg pain.  Has anybody else had this? Im just hoping it will end in a couple of days, but dont think I can take it for the next 2 months, its horrible.

[MaryJane]

Now have a wig & am seeing my hairdresser on Friday for advice on what to do with the very patchy real hair I still have.

Am also on antibiotics prescribed by gp for UTI. (think may have been part discomfort from constipation too). Had phoned chemo helpline thinking that was right thing to do but they didn't seem to want to know & just said phone gp. Left feeling a bit I was just making a fuss as not mega serious but maybe they were just busy.  Bit confused now about when to call chemo number, when to call GP and when I can  just use normal pharmacy counter remedies.

Have appointment with breast surgeon this week too, apparently she likes to see people when half way through chemo ...so I guess also means starting to think about what happens next. 

[Carmen Verandah]

Goodness what a nightmare for you Phoebe. Hope things are settling down a bit now.

Cx

[MaryJane]

Really tough for you Phoebe but glad you are getting good care. Hope things continue in the right direction.

[Koukla]

Goodness that sounds awful Phoebe I'm so pleased your feeling better today. 

Take care xx

[Phoebe55]

Well things fell apart quite rapidly and I ended up with neutropaenic sepsis. It's been a crazy few days but I'm recovering and have had so many broad spectrum antibiotics pumped into me, but feeling so much better today than I did on Friday and all of my levels are recovering. 

Blimey, I had read about it but I was amazed at how quickly it came on! 

Phoebe xx

[Carmen Verandah]

Hi Phoebe

That sounds really tough, I hope you are taken good care of in hospital and that you will be feeling more comfortable soon.

💐

[Carmen Verandah]

Hi Koukla

Sorry to hear about your problems and hope you are feeling a bit better today.

🌻

[Koukla]

Oh Phoebe I totally feel your pain, I am so sorry you are going through this and hope it gets sorted soon and without further complications. It's really made me scared to eat and drink which I know is ridiculous but it was such a horrible thing to have to go through.

Take care and I hope your home safe and better before too long xxx

[Phoebe55]

Well I recognise that! I was admitted to hospital last night with a fever and flooding bladder and I'll be having the insane constipation dealt with over the weekend. My stomach is absolutely jam packed and it's a UTI risk so it's going to be some weekend. Also neutropaenic so they're having the change the meds for that too.

What a mess! 

Wishing you all lots of luck with your next treatments and hope you can have good weekends

Phoebe xx

[Koukla]

I had my 3rd infusion of FEC on Monday and have had a nightmare ended up with impacted feces yesterday and it has really out me off wanting to eat or drink anything I've decided not to take my anti sickness meds today as scared it's going to happen again. I'm pleased I'm halfway there but I hope to goodness they can change something next time. I hope everyone is coping ok.

Thinking of you all

Xxxx

[Phoebe55]

I think I'll need to get them to rebalance the anti nausea drugs for me: Dose 3 of the AC has been horrendous now that the post-treatment steroids have worn off, and my bladder and bowels are wrecked. I was up all night and have only managed Dioralyte for breakfast. Waiting to hear back from the chemo nurse about what I should do next. Feeling really grim today: the chemo nurses say that Taxol should be easier on me than AC but I don't want to get my hopes up. 

Hope everyone else is doing ok?

Phoebe x

[Carmen Verandah]

PS

Does your head get hot wearing a wig? I was on HRT before my diagnosis, and I get  lots of mini hot flushes, so sometimes my head gets very hot and sweaty in a hat. I’m wondering what it would be like with a wig?

Thanks 🌼

[Carmen Verandah]

Sorry to hear you are suffering with nausea.  I made ginger tea from fresh ginger with a bit of honey which helped me with my first chemo. If you tell the staff on the chemo unit they might be able to prescribe something for the nausea? It is a horrible feeling. 

 I downloaded some cookery books from the MacMillan website and they have a lot of info if you type Eating problems into the search box.

Take care🌻

[Carmen Verandah]

That’s good to hear. My wig fitting appointment is next Tuesday. I ordered a hairband wig from headscarvesbyciara.co.uk, and a fringe that you can wear under a hat from Simply Wigs, so wait to see what they are like. I was thinking of going for a wig similar to my current hair, which is short and grey but think I will go for something a bit longer and more stylish 🤔.

My second chemo was easier than first time round and I’ve been less tired and my guts have been much better, which is a relief. 

Cx

[MaryJane]

Hi. Have also bitten the bullet and made appointment for wig fitting in 10 days time. Have been cold capping but have lost a lot on top & very visible large bald patches. Ok whilst I am at home but feeling very self conscious if I go for a walk and not really a hat person & also worried about after chemo and how long it will take to grow back when I want to feel normal again.  Am going to try not to shave as suggested may be easier to blend new growth into what I have left when it comes. But that also means need to carry on with cold cap. Was given gauze cap to wear under cold cap this time so cap not in contact with bald scalp patches and that did help.

Have found it helpful to be told this is very personal journey and do what is right for you.

Cancerhaircare charity were also really helpful to talk to.

[Strangely upbeat]

Hi Carmen, I had a fab day wig shopping on Tuesday and bought one and have put one on hold for me while I get my nhs prescription.  The one I have bought is much longer than my hair but what I would like if mine would grow that long!  The other is more like my hair so that when I go back to work, the kids and parents might not notice (I work in a school).

I hope you appointment is as successful as mine, take care xx