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June 2019 chemo starters

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Re: June 2019 chemo starters


Paclitaxel does seem to affect skin, I have spots on my scalp as well! My hands are peeling now and the neuropathy is pretty bad, seems to be either completely numb or feels like I have dunked my hands and feet in a bucket of nettles! I think my dose may be lowered, I am weekly so three more to go! I had the weird hearing thing with my first chemo, Carboplatin and paclitaxel. It went after a few days. Ruby x
@Alvilajo wrote:

Hi 😁

Zed51 glad you’ve got through the chemo 😁

ruby ive come up with red spots round the side of my face which seems a bit strange, the placlitaxel does seem to have horrible side effects, I also have a sore mouth and a ulcer on my tongue which is painful, two weeks in-between doesn’t give you enough time to recover really. I’ve got bloods Monday then two more left. Feet and hands not as bad after lowered dose. Also had anyone else noticed a swooshing noise in their ears like a pulse?

I walked round ikea today and was exhausted by the end of it.

chicken I hope your counselling helps, I was passed for some but never heard another thing about it🤔 but I have got 6 free treatments through a charity called harmony, it can be massage reflexology etc, 1st ones in two weeks 🥰

vic xx


 

Member

Re: June 2019 chemo starters

That's all useful for me too Shi. If I have surgery before Christmas I think I'll be having rads in Jan maybe. 

 

I'm off to weight watchers this morning, I've decided enough is enough and I need to watch my weight. I've put on a stone, so whilst I'm on the final two cycles of chemo I'm going to be more careful. 

This round from doxectaxal has been fine, so I'm planning on getting back to the old me again. 

 

I've took pics and measured myself in order to know I'm on track. 

 

Here's to a new start Smiley Happy 

Member

Re: June 2019 chemo starters


@Shi wrote:

Zed for rads see if you are getting 15 + 5 boosters, and ask which bits are getting the rads, it differs for each of us, they can do chest wall and under arm etc they will know what you need and exactly what to do. You might have 3 small dot tattoos done so they can line you up on the machine, not all trusts do this but yours might. During rads I just wore a vest top with no seams from H&M under clothing and a kaftan thing at home to get air to skin. Ask about creams to use and I kept one in fridge at home and one in handbag for slapping on while out and about. Ask about using deodorant during rads too. I still drank lots of water and did have a sleep most afternoons too. Try and get a time slot that works for you too if you can the trust I was with arranged around the same time every day so keep that in mind if you are going on your own and having to park 😘 hope that helps a bit 💕💕✨✨Shi xx


Thanks Shi that is all really helpful. Just good to have an idea before embark on this next bit. Have been so so tired this weekend think cumulative effect of all this stuff. Keep having to concentrate on the fact that it will get better in a week or so! 

Member

Re: June 2019 chemo starters

It's at The London's Institute for Cancer Research.  Doing trials now...

Member

Re: June 2019 chemo starters

Hi ladies,

 

noticed this morning on Apple News that there is new trial for those of us who are TN, 

its something that will follow on after chemo is finished.... called BOS172722.... causes cancer cells to die.. worth a look 😳😳  xx 💖💖

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Zed for rads see if you are getting 15 + 5 boosters, and ask which bits are getting the rads, it differs for each of us, they can do chest wall and under arm etc they will know what you need and exactly what to do. You might have 3 small dot tattoos done so they can line you up on the machine, not all trusts do this but yours might. During rads I just wore a vest top with no seams from H&M under clothing and a kaftan thing at home to get air to skin. Ask about creams to use and I kept one in fridge at home and one in handbag for slapping on while out and about. Ask about using deodorant during rads too. I still drank lots of water and did have a sleep most afternoons too. Try and get a time slot that works for you too if you can the trust I was with arranged around the same time every day so keep that in mind if you are going on your own and having to park 😘 hope that helps a bit 💕💕✨✨Shi xx

Member

Re: June 2019 chemo starters

Hi 😁

Zed51 glad you’ve got through the chemo 😁

ruby ive come up with red spots round the side of my face which seems a bit strange, the placlitaxel does seem to have horrible side effects, I also have a sore mouth and a ulcer on my tongue which is painful, two weeks in-between doesn’t give you enough time to recover really. I’ve got bloods Monday then two more left. Feet and hands not as bad after lowered dose. Also had anyone else noticed a swooshing noise in their ears like a pulse?

I walked round ikea today and was exhausted by the end of it.

chicken I hope your counselling helps, I was passed for some but never heard another thing about it🤔 but I have got 6 free treatments through a charity called harmony, it can be massage reflexology etc, 1st ones in two weeks 🥰

vic xx

Member

Re: June 2019 chemo starters

You are getting close! I hope it’s good news from the surgeonSmiley Happy

And I’m a great believer in counselling and therapy. It’s good to talk. We’ve all been through a lot. 
take care 🥰

Member

Re: June 2019 chemo starters

Well done on last chemo Smiley Happy

The nurse said herception and perzumbamb are still classed as chemo, I think mine is via an injection not iv. I've never been sure what to call that part of the treatment. 

 

I fancy seeing joker, but something about Judy I didn't fancy, glad to hear it was good though. 

 

Got a call from the bc nurse to find out date of last chemo so she can book me to to see the surgeon :/ it's getting closer!

I'm hoping I can get a lumptecomy. 

 

Also sorry to hear about blisters and delays on chemos Smiley Sad hope next week you both are OK to go ahead.

 

I've been offered some counselling, so I'm awaiting an appointment. The chemo ward nurse thought it would be a good idea. So I thought why not, I'll give it a go. 

 

Happy weekend Smiley Happy 

Member

Re: June 2019 chemo starters

Poor you. I hope your blisters clear up. That sounds incredibly painful. 
i reduced my Paclitaxel to 75% but neuts were lowered still... will see what happens on Monday but won’t be surprised if I have to miss another round. ...

Member

Re: June 2019 chemo starters

Hello ladies,

 

great news on last chemo Zed :-) 

 

i had my chemo postponed this week, neuts too low and hands covered in weird blisters and red spots, very sore indeed - have been given steroid cream and Pregabalin for the nerve pain/neuropathy. Seeing oncologist next Tuesday to discuss dose reduction.

 

vicious stuff this paclitaxel!

 

i had radiotherapy first time round, happy to answer any questions anyone might have? I had standard radiotherapy then a boost to the tumour bed. Tbh, radiotherapy for me was a doddle compared to chemo but everyone is different! 

 

Ruby x

Member

Re: June 2019 chemo starters

Great news!!!! 👊🏻
my radio isn’t until January so no help from me I’m afraid. Will be interested to hear what they say to you 

😘😘😘

Member

Re: June 2019 chemo starters

Happy weekend from me too. Had my final chemo yesterday! Bye bye docetaxel! Now just the side effects to get over. Still have 15(?) doses of herceptin & pertuzumab thru IV every 3 weeks so no bell ringing yet but no more bloody chemo!! Whoop whoop. Radiotherapy consultant next week. Any ideas what I should ask about? Hope everyone else doing ok. Zxx

Member

Re: June 2019 chemo starters

Hi ladies

just to wish you all a good weekend and hope you’re doing ok

I went to see Judy last night. It’s good and I recommend it!! See Joker tonight. It looks quite dark but looking forward to watching it. Two potential Oscar-winning films!!!
💕💕💕

Member

Re: June 2019 chemo starters

Hi Chicken81

 

I have had oral thrush for my past 4 chemo sessions.  This time for my 5th session I read about having a teaspoonful of virgin unrefined coconut oil.  Swish it round in your mouth for 1 minute.  I didn’t get oral thrush this time.

 

kindest regards 

Helen x

Member

Re: June 2019 chemo starters


That’s a bummer, so frustrating when you are all ready to crack on. 

 

Enjoy your netflix!

@EnglishRose2019 wrote:

Well I'm back home...neuts at 1.0 so they won't give me Paclitaxel this week. So decided to watch Netflix instead!

I'm sending huge hugs to those of you who are feeling awful today...

I thought Ad Astra was a bit slow and spacey for me (ha ha), but enjoyed watching Brad Pitt Smiley Wink

xxx  


 

Member

Re: June 2019 chemo starters

Well I'm back home...neuts at 1.0 so they won't give me Paclitaxel this week. So decided to watch Netflix instead!

I'm sending huge hugs to those of you who are feeling awful today...

I thought Ad Astra was a bit slow and spacey for me (ha ha), but enjoyed watching Brad Pitt Smiley Wink

xxx  

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Hi chicken, yes use the difflam as well as fluconzole tablets 😘💕💕✨✨Shi xx

Member

Re: June 2019 chemo starters

Mri done, I'm beat so going to rest up. 

Think I'm getting oral thrush again so going to start tablets. 

Would you recommend me using the mouthwash now too? 

Already took immodion.. Not having diaherra like last round. 

I'm at the stage of losing taste again :/

Member

Re: June 2019 chemo starters

Thanks all for cinema advice! Went, very empty, saw Ad Astra, enjoyed it (more than my 18 year old did who was the one that instigated it!) 

last docetaxel this coming Thursday. Bit worried about it. Should be fine after having it twice already & three lots of FEC. Am going slightly mad. Wish was also last herceptin & pertuzumab but they continue for months. At least not as debilitating as chemo. Good luck everyone having doses this week xx

Member

Re: June 2019 chemo starters

Hi Minimad

 

So pleased to read you were clear from BRACA.  I have just had my last chemo -  I feel so ill this time.  I just want to feel normal again, hopefully it wont bectoo long before I do.

 

Louise

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Re: June 2019 chemo starters

I hope you don't mind me hijacking this group but my husband is running the Royal Parks Half Marathon in 2 weeks time in aid of Breast Cancer Now. If you would like to donate the link to his page is below.. Thank you Smiley Happy

https://www.justgiving.com/fundraising/ian-wood46

Member

Re: June 2019 chemo starters


I hope the lowered dose is kind to you, nearly there so keep your chin up! Anxiety can make everything seem worse! Xx
@Alvilajo wrote:

Hi everyone, U all seem like you’ve been through much more than me, some of you not the first bc. You all seem so brave.❤️ I had 2nd placlitaxel Thursday lowered dose, not feeling as bad as last time, but so nervous at moment and teary again!! I’m dreading the next two as it takes so long in the chair more than the chemo itself, I think I developed a little phobia.vic xx


 

Member

Re: June 2019 chemo starters

Hi Vic

I really feel for you. It's a horrible feeling. I get some anxiety before every chemo too - I'm off to hospital in an hour.. I don't sleep well the night before, and if it wasn't that I felt well for the first time yesterday in a week, I'd have felt it hanging over me all day! 

Anyway, today will be 5/12 of Paclitaxel so getting closer to the end...

 

 

Member

Re: June 2019 chemo starters

Hi everyone, U all seem like you’ve been through much more than me, some of you not the first bc. You all seem so brave.❤️ I had 2nd placlitaxel Thursday lowered dose, not feeling as bad as last time, but so nervous at moment and teary again!! I’m dreading the next two as it takes so long in the chair more than the chemo itself, I think I developed a little phobia.vic xx

Member

Re: June 2019 chemo starters

Just wanted to say you should go to the cinema. 

As a general rule I don't stay away from anywhere unless I'm actually ill feeling in myself and cannot be bothered.

Maybe I'm not cautious enough! 

Got my mri tomorrow, think I'll be napping all day after as I've just had cycle 6/8, think this doxectaxal with 25% less is going to be less harsh this time round.

Here's hoping 🤞 

Member

Re: June 2019 chemo starters

Ive been going to the cinema probably all the time! I’m going to see Judy and a Joker this week. 
What did you see?

xx

Member

Re: June 2019 chemo starters

Zed, just realised you asked your question about the cinema a few hours ago, so if you went I hope you and your family had a good time Smiley Happy x

Member

Re: June 2019 chemo starters

Hi Zed, I'm from the Oct'17 group and also TN. I went to the cinema a couple of times when I was having chemo and was fine afterwards. I went on my good week and also tried to go when it might not be so busy x

Member

Re: June 2019 chemo starters

Thanks Ruby. Think was being a bit over the top. Have been out other places eg restaurant in last couple of days so why not cinema ! Thanks x

Member

Re: June 2019 chemo starters


Day 18 in theory you should be past the nadir point, I have been to cinema, gigs and to comedy night and pub quizzes, I just sit at the back or away from crowds and hand wash like a crazy person! Enjoy! X
@Zed51 wrote:

Hi all 

re the gene testing thing. I’ve had it (Nottingham) - not got BRCA gene but slight possibility of the PALB2 but they need look further after I’ve finished treatment. If I did have that they’d only really monitor me as much as they would normally after having BC. I was offered testing as my mum and my dad’s sister both died of BC in their 50s (however this was in 1980s so treatment v different). Think they’d just offer others in my family test if I was positive. 

Also a silly question maybe - I’m on day 18 of three week cycle, people have said don’t go places like cinema due to infections but I really want go with my family this pm & looks like others of you have been braving it?! Am I being too cautious?! Zxx 


 

Member

Re: June 2019 chemo starters

Hiya,

 

interesting how many triple negative ladies ladies on this thread, I too am tn now but the first second and third times were all er +

 

i was gene tested first time round in 2009 when I was 38 and was negative, 23and me also used to do brca testing, not sure if they still do?

 

Ruby x

Member

Re: June 2019 chemo starters

Hi all 

re the gene testing thing. I’ve had it (Nottingham) - not got BRCA gene but slight possibility of the PALB2 but they need look further after I’ve finished treatment. If I did have that they’d only really monitor me as much as they would normally after having BC. I was offered testing as my mum and my dad’s sister both died of BC in their 50s (however this was in 1980s so treatment v different). Think they’d just offer others in my family test if I was positive. 

Also a silly question maybe - I’m on day 18 of three week cycle, people have said don’t go places like cinema due to infections but I really want go with my family this pm & looks like others of you have been braving it?! Am I being too cautious?! Zxx 

Member

Re: June 2019 chemo starters

Hi Louise,

 

i also was TN ,  first in 2017 and again this year... didnt expect that again 😳

 

i had the BRCA gene testing done as i have bc on both sides of my family.  Glad to say I was clear 👍👍  i have a 39 year old daughter who is going to start having yearly mammograms from when she is 40..  

i finished my chemo 5 weeks ago so now recovering and looking forward to xmas.

how about you ??   Mini mad xx x💖💖

Member

Re: June 2019 chemo starters

Hi Chicken

Thanks for your advise - am definately going to push for this.  If not succesful I am going to have it done privately.  I have 2 daughters so I worry about them as well as myself.

 

Thanks

Louise

Member

Re: June 2019 chemo starters

Thanks Shi

I have read about people having BRACA test done privately, so I will go down that route if necessary.  I got made redundant at xmas, so I can dip into that to pay for it.  

 

I hadnt heard about the PALB2 test until now, will do a bit of google research on that and ask my onc.

 

Thanks

Louise

Member

Re: June 2019 chemo starters

Sounds like you've got a good case to ask for a referral. 

Ask the consultant to do it. 

The genetics team had a whole list of tests, they just decided what to put through. The main one is brca so as long as you get that, then it's helpful to know the risk. 

Just if you feel passionate enough, dont give up on pushing it through. 

Fingers crossed you get the testing you want. 

 

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Hi Louise, I was tn and got brca gene test due to bc running in family but I didn’t have brca gene either. Wasn’t offered the other one that chicken had. I think there are people who have paid for it to be done private if your trust won’t do it, please use the ask the nurse facility on here, they will help. ❤️💕💕✨✨Shi xx

Member

Re: June 2019 chemo starters

Hi thanks for your reply.

Cancer does run in the family.  My dad and my cousin (on dads side) both died young from cancer.  My cousin (sister of above cousin) fought cancer.  I've had it twice.  So I'm hoping to get referred.

 

Louise

Member

Re: June 2019 chemo starters

Hi Louise, my oncologist wanted me tested as I'm 37 so relatively young for BC. Also in family we've had cancer in close relations with me, but not BC but he thought it Warented a test.

The genetics were not in agreement, they said they'd only test people over a certain % of risk and I was about 1% under, but in the end I got put through. So it was a little bit of chasing myself.

 

They test for brca as its the main bc and ovarian mutation, but palb2 is another bc mutation gene, but not related to ovarian.

 

But the referral does need to come from oncologist, but genetics are unlikely to test if there is no history in family and won't just take a referral either. 

Mind field! 

Member

Re: June 2019 chemo starters

Hi

I'm Triple Negative, my second time of BC,  and am trying to get tested for the mutant gene.  My Onc wasnt very helpful.  Please can you let me know how you got tested.  So pleased for you that your results were negative.

 

Also what is Palb2 please?

 

Many thanks

Louise

Member

Re: June 2019 chemo starters

It’s so nice to do some normal things during all this treatment isn’t it?

afternoon tea sounds fun too 😋😋😋

Member

Re: June 2019 chemo starters

yep seen Downtown last week after I was deferred from chemo - we had afternoon tear as well before hand - Ive rewatched all six series now too 


@EnglishRose2019 wrote:

That all sounds like great fun! Have you been to see the Downton film yet? Some great lines from Maggie Smith


 

Member

Re: June 2019 chemo starters

That all sounds like great fun! Have you been to see the Downton film yet? Some great lines from Maggie Smith 🤣

and all good news the your results. You must be pleased. Let us know how it goes on Monday after your mri. Fingers will be crossed!

 

I’m still waiting for my gp to send me an appt after the referral from my oncologist are genetics testing. 

look after yourselves ladies

💕💕💕

Shi Community Champion
Community Champion

Re: June 2019 chemo starters

Great news chicken on negative brca result 👍 💕💕✨✨Shi xx

Member

Re: June 2019 chemo starters

Hi, Had chemo 6/8, so only x2 more. Liver counts back to an OK level,

but docextaxel reduced by 25% so to keep them at a lower level.

Got mri Monday to check lump and see if a lumptecomy is viable... Hoping so. 

Got some genetic testing results, tested negative for brca. 

Awaiting results for palb2 still.

 

Well aren't we all booking up, I've booked a romantic break to a castle in a few wks whilst our son is away with school on a residential. 

Family break in half term in a wooden wig wam, and then a polar express steam train ride and family stay in a big Manor house (I'm a big downton fan so love castles n Manor houses!)

 

So looking forward to getting away, staying in a four poster bed for first time too! 

 

Got my drugs all in ready for any sides effects! 

Here's hoping Smiley Happy 

Member

Re: June 2019 chemo starters

Hope it goes ok tomorrow Vic and glad you enjoyed your Look Good session. 
thanks for anti nausea suggestions Ruby. I’ll check what they are giving me before chemo. I’m taking domperidone and metoclopramide tablets but neither making a huge difference tbh. 
anyway hoping will have a good nights sleep as I have one of my best friends coming to visit tomorrow. 
Sending you all big hugs xxx

Member

Re: June 2019 chemo starters

Hi ya hi to everyone. 

2nd placlitaxel tomoz as had extra week off, hoping lower dose is better. Seeing oncologist too. Went on the look good feel good which was nice and yes had a lovely goody bag with skin care,make up and perfume. Xxx

Member

Re: June 2019 chemo starters


Sorry you are feeling rubbish, paclitaxel can be quite harsh. Not sure what anti nausea they had you on but I have found ondenasetron to be excellent. I mainly use omeprezole however post chemo as my sickness is severe acid indigestion like rather than nausea. Worth trying maybe?  Having breast cancer covered would cover you in the unlikely event of a recurrence if you needed to cancel.

 

Sod the housework! I bought a robot hoover, does a better job than me!

 

cambridge is lovely. Enjoy

 

chin up, this will all be a memory in just a couple of months!

 

ruby xx

@EnglishRose2019 wrote:

Hi Ruby

I was just about to write to say hello and your message came up. Glad you're on the home straight this time. Hope it can go ahead bearing in mind the other issues going on.

I've had my 4th (of12) Paclitaxel on Monday and feeling awful this week. Last week I felt completely normal and energised so feeling incredibly low. They lowered my dose to 75% as neutrophils down to 1.2 now and also took away the anti-nausea as was causing such awful constipation, but think I may have to ask for that back! Just having to take it very easy this week - the housework is definitely not happening...

So glad you've booked a holiday. I have just booked a weekend away in December for me and hubby in Cambridge. We've never been before so looking forward to that. And booked Seville at Easter also leaving the boys behind! I'll look at that insurance. LV have me covered for everything other than relating to BC, but tbh I'm not sure if there would be any emergency relating to the cancer but presumably I must be covered??? Can't face thinking about it today however.

Bought some manuka honey and ginger lozenges at the health food shop which provide temporary relief for my sore throat and nausea. 

I hope for the rest of you having chemo today that it goes well and look forward to hearing from you all as and when.

xxx


 

Member

Re: June 2019 chemo starters

Hi Ruby

I was just about to write to say hello and your message came up. Glad you're on the home straight this time. Hope it can go ahead bearing in mind the other issues going on.

I've had my 4th (of12) Paclitaxel on Monday and feeling awful this week. Last week I felt completely normal and energised so feeling incredibly low. They lowered my dose to 75% as neutrophils down to 1.2 now and also took away the anti-nausea as was causing such awful constipation, but think I may have to ask for that back! Just having to take it very easy this week - the housework is definitely not happening...

So glad you've booked a holiday. I have just booked a weekend away in December for me and hubby in Cambridge. We've never been before so looking forward to that. And booked Seville at Easter also leaving the boys behind! I'll look at that insurance. LV have me covered for everything other than relating to BC, but tbh I'm not sure if there would be any emergency relating to the cancer but presumably I must be covered??? Can't face thinking about it today however.

Bought some manuka honey and ginger lozenges at the health food shop which provide temporary relief for my sore throat and nausea. 

I hope for the rest of you having chemo today that it goes well and look forward to hearing from you all as and when.

xxx