May chemo starters 2018

[Sue C]

Hi Ladies

This thread is for those of you who are starting chemo in May. Hopefully you can all help and support each other along the way. 

I had chemo in 2016, so happy to help where I can.

Best wishes

Sue

[Joandbasilthedog]

Hi jem the drug name was Akynzeo so dont know it that was the same . Feeling sicky and tired today but my blood sugars are high because last day of steriods so might be combination. I was hoping for a wonder cure as its my 14 yr old sons birthday tmw and mine on Friday ( slightly older) .... i dont want to be sick into the birthday chinese ! .. i spoke to Bcnurse today for first time since starting chemo after leaving message and she was fab at talking through various scenarios and time scales . Michele you were spot on 4-6 weeks after last chemo but it will be when I have fully recovered from the chemo as i need to be a full strength. We discussed going back to work but probably full time might not help recovery so might get signed off and see how i go . I have to wait for my next scan and then discuss with new surgeon ( my oncologist has just retired as well wont take it personally !!) . I was told they will look at the ‘ safest outcome’ and it will be my choice. It was heavily leaning towards a mastectomy and rads before chemo so we’ll have to see. I also have evidence in nodes so will need clearance too . She said I could have reconstruction at any point but generally a year after rads but I am not sure . My bikini days are over a long time ago but will see how i go. ........ See lots of you having the sweats ... i just look like aunt sally with rosy cheeks and forhead . I have a ceiling fan on constantly... but temps are fine . Like Tanya an absence of periods probably are in the mix too or just the cocktail of anti sick tablets , anti heartburn , steriods, chemo and other tablets !😂...I am just going to sleep it out i think till middle of September!! Keep going Chemo ladies xx

[tanya]

Hi everyone just catching up on how everyone is doing and Im another one with the night sweats I never knew they were a se either. My first chemo was in may and my last period was in April so they stopped instantly too. I have to sleep with a fan on my bedside table. I've also put on a stone since starting treatment and can't shift it at all , Im hoping that after I've finished treatment I can loose it. Been practicing holding my breath for my rads scan tomorrow hope all goes well . Big hugs to everyone we're nearly there ladies ❤️

[mustardandgrey]

@Jencat yep, they're dreadful!

I've started carrying a small fan in my bag now as they just come on so randomly.

And the night ones just make it so hard to stay asleep.

I didn't get them with FEC, but with Docetaxol they started almost immediately.

xx

[Jencat]

I got sweats at night whilst on chemo and it's horrible. I'm not 100% sure, but I think they went before my chemo actually finished. I hadn't realised they were another side effect until I saw other ladies were getting them too! x

[JemPD]

Oops Linda meant neuts are back up!

[JemPD]

Linda - what a difference a day makes 😊 pleased to hear heirs back up. Hope all is going well with chemo today. Hoping for all us t ladies side effects much better this cycle,
Joandvasilthedog - I had the palonestron via a drip yesterday- 1st dose as usual have arkensio (not sure spelling correct)- for the first time I felt really sick during chemo, might change back for last dose. How are you on it? Sorry to hear how your diabetes has not been good with all the other drugs. I agree with you that our bodies have been through an awful lot over the past few months, but we are nearly there the finishing line is now in sight. The flight to Greece is ready to land in a short time. Do you know what surgery you are having ?
Mystard and grey - think you will be the first past the finish line 😆🎉. I get sweats too- thought it might be hot flushes, might be chemo sweats. Like you I’ve had the full treatment- 2 surgeries, chemo and then rads followed by meds for 5 years- but the chemo had been the hardest thing ever.
Take care all, hope your bloods are good to go for cycle 5 Tropical and Leanne
🤗

[Linda Corinne]

Neuts were up to 2.2 from 0.75 yesterday so 6th chemo is going ahead as planned thank god. Don't know if eating fruit green veg and manuka honey helped or not but seems to work for me. Went to work today and just did normal stuff last night after work. Didn't sleep well though as thinking about today and appointment re survey on 28th. 

I wonder how low my nests actually went though? They may reduce the dose they said but didn't this time. Thanks all for advice and support.

[mustardandgrey]

Hello, ladies!

Looks like we're all suffering some side effects as we near the end of chemo.

I'm having my sixth and final chemo on Monday, and I'm actually quite excited about it!

My veins may have protested...no viable ones left in my hand, so they resorted to my forearm last time, fingers crossed for Monday.

BUT it's the end of a huge part of this journey.

I can tick of two surgeries and chemo on Monday, and feel on the home straight then with four weeks of radio.

And that's a good feeling 🙂

This cycle - 2nd of three docetaxol...I have really struggled with fatigue.

Everything makes me tired, and I keep having to reach for the duvet.

And as for the chemo sweats...oh my goodness, the random sweating!!!

We've all come such a long way since May...nearly there!

Sarah xx

P.s...@Tanya I'm also a leftie breast and have to do the breathing/holding breath technique.

It worried me at first as although I can hold my breath for 20 seconds normally, under pressure I worried it would be very different.

But it was fine at the planning session xx

[Leanne17]

@tropical. I’m same as you 5th cycle Friday. Just had bloods. Hoping side effects are better than last time. And last chemo on the 7th sept so we will be crossing the finish line together. I don’t have to have radiotherapy and had my op in March so that’s me done I think.

Hope everyone doing ok
Leanne xx

[Tropic_al]

Hi all,

sorry for the silence. I've been feeling better so working and out and about a bit. What a difference a week makes. Got my taste buds back after about day 11 so that helped too. Now on count down to T number 2 on Friday so steroids on Thursday...always such a shame when you start to feel better. Bloods tomorrow and hopefully ok..it is strange to want to be well enough to have toxins pumped into you isn't it? The nurse who takes my blood always texts me with 'bloods good for chemo' with a smiley face. Everyone seems to be saying that the first T is the worst so I'm holding onto that for all I'm worth as it would be good to not feel so tired but we'll see. I don't think I can avoid the sickly feeling or loss of taste buds altogether but  I'll settle for avoiding an A&E visit! This is number 5 so my last T will be on 7th Sept as long as bloods are ok. 

Jem, I hope you're feeling ok after your chemo session. Hope everyone else isn't feeling too bad this week. 

Will be back soon,

Take care all, Tropic_al xx

[Michelle21]

Hi Joandbasilthefog, I have finished chemo now and have my op on Thursday. I was told op is usually between 4-6 weeks after the last chemo was given. I have also been that rads is usually 6 weeks after the op. But I think both of these are approx and can vary from person to person. I hope chemo 5 and 6 go ok for you x

[Joandbasilthedog]

Hi ladies .. chemo 5️⃣ for me to and i hope sickly side effects much better than last time (10 days in bed with much sickness) This time as well as new every day anti sick tablets they gave just one big pill before the chemo (netupitant/palonosetron) . Have any of you had this ? Any good ? The wonderful nurses told me it usually does trick . I can’t understand why no 4 chemo was so bad but they said as my little 4 drug cocktail stays the same it just starts to compound .Hence why my veins played up to ( not allowd port) and steriods are mucking up my diabetes so niw need a little insulin . My bodys going actually had enough now .. roll on the last chemo ladies .. we can do this ! I rang my breast cancer nurses number today ( feeling brave) just to ask what happens next . I get transferred bk i guess after last chemo from chemo ward back over the otherside of the hospital to breast unit ( although carry on with hep injections) and op awaits and rads and I just wanted to know rough time scales just to get some control back . I want to go back to school work havent been allowed due to infection control but also get to be bk in full strength for op . Has anyone else been given any ideas if they are awaiting an op ? Anyway keep going all !!👍 long post sponsored by steriods 😂

[Linda Corinne]

Surgery is a therepeutic mammoplasty like a lift just on one side but can have other side done later after radiotherapy if i want.said no initially but have changed my mind if tbey look different sizes.x

[Hets67]

@jemPD oh now that must have really hit u hard hope ur ok now? If all sticks with this new plan my last chemo will b 6th sept. Re bone pain, I know this is a specific se from T. However I’m only having FEC and my bones/joints are now so sore and tired! ESP at night when I stagger around like an old lady - at this rate I will need to buy a stick!! Xx

[JemPD]

Hi chemo 5 ✅ today. Jem at thanks for your message. For the first time felt really sick and unwell, nurses were straight on it and after some more anti sickness meds and rest was ok- really pale but managed to have a look around the radiotherapy dept with one of the chemo nurses - helped put my mind at ease a little - staff there were also lovely. Hoping se will be better this cycle. 

Linda - pleased you now know how many cycles - I'm sure it helps to know the plan. My last chemo session is 4th so finish similar time. Sorry bloods not where they should be today, fingers crossed for you tomorrow. What surgery will you be having after chemo or is this unknown yet?

Herts- hope your bloods bette so no more delays. When is your last cycle if all goes to plan?

Tanya, Tracey Mac and Tripoc_al - hope you are all doing ok. How is bone pain?

hugs xx

[Hets67]

@linda if someone this time last year had told u you would be stuffing ur face in the hope to be ‘well enough’ to have chemicals injected into you to make you feel unwell you would have laughed in their face!

[Linda Corinne]

Yes last time i had manuka honey fruit juice etc and it worked. That explains why. I rested too but hospital says that doesnt make a difference. I havnt been having fruit juice but last time i had manuka honey although its since been removed from sale.will get some fruit juice and manuka honey green veg etc down me! You never know.fingers crossed poisoning goes ahead.hate being in limbo.

[Hets67]

@Linda Corinne - I had v low neutrons last week (0.4) and it was delayed by a week. Waiting for result from today re Thursday. But I was told this morning by a friend who has been having chemo on and off for 10 years that if you stuff yourself full of good before ur blood test your count should shoot up. She has even had blood test, got low result, gone out of hospital, stuffed herself silly, then gone back and had ‘normal’ result. Worth a try? I will certainly try it if I get another call in the morning!

[Linda Corinne]

Am having 7 cycles so last is on the 5th September. Am going to see the surgeon on the 28th at the London hospital I am having the surgery at. Eek its getting closer!
Have to go in an hour early for my chemo tomorrow to get another blood test as my neuts are 0.8 to see if high enough to have chemo tomorrow. This happened last time and the next day they went up to the highest ever. They were going to postpone it a week then suggested coming in later in week if any free slots as realised it happened before. Nothing I can do to get them up apparently. They suggested reducing dose of T. I was told they were ok so told surgeons PA I would have chemo tomorrow. They said here in Somerset they could get delayed next time anyway so nothing is set in stone.

[Hets67]

Thanks JemPD yes so glad I avoided hospital. @tanya u poor thing it sounds like u had such a nightmare with ur op. Chemo and rads probably feel relatively straight forward in comparison (at least emotionally)? Question for u ladies who have had FEC through ur veins. I was told today that my port-a-Cath is blocked (couldn’t draw blood so had a line X-ray). So for my last two cycles I have to have it through a canular in my arms - any tips to minimise the damage?

[Jencat]

Hope chemo goes well today Jem xx

[Tracey Mac]

Tanya,

Glad to hear the side effects are more manageable this time around.
I had my radiation scan just before you and I haven't been called back for the breath and hold technique and I had a left mastectomy. They told.me that it can be difficult to treat the breast and chest wall in some patients as the heart and lungs are so close and some.people need to use this technique to push the chest away from the heart and expand the lungs. I am guessing they felt.my risk was minimal.

[Jencat]

Jem fingers crossed for you that you find the next dose of chemo easier. Not sure if you have the injections after chemo, but I think they made the bone pain worse, although I don't think my onc agreed. Yes, at the start of it all you can't see the end of it and it's so nice when you start to see that glimmer of light at the end xx

[Jencat]

Hi Tanya, I'm from the Oct thread and I had to do the breath and hold technique when I had my radiotherapy in April. The sessions took a little longer because of it, but the radiographers help you to do the breathing correctly x

[tanya]

Hi ladies hope everyone is ok ❤️ Im on day 11 of second T and agree with everyone the first is the worst Im feeling well and able to go out ever day and the cooler weather is so much better x I have a second radiotherapy appointment on Thursday for another scan and I am having the breath and hold technique as I have had a left mastectomy, unfortunately I had an immediate implant with surgery in February that went drastically wrong as I developed necrosis and sepsis two weeks later, therefore resulting in emergency surgery and now unable to have any reconstruction. I believe the breath and hold is because of reducing long term side effects to my heart. Anyone else having this x

[Linda Corinne]

Got 3rd T on Wed if blood test is ok tomorrow. Had 3 days without going to the loo so was painful yesterday and today. Back on laxatives today and cream for the pain. It's day 20 now but otherwise the 2nd T has been better than the first. 

[JemPD]

Hi Jencat thanks for your post- you October ladies are a really help and encouragement - hoping I’ll be the same as you and this dose slightly easier. Then only 1 to go 😊- at long last there is a light at the end of this long tunnel. Xx

[Jencat]

Hi Jem, I'm from the Oct thread. I found the first session of docetaxol a lot harder than the following two, so hopefully it will be the same for you x

[JemPD]

Herts- sorry chemo delayed, but you have stayed out of hospital which is good news.

how is everyone? Managed a week away with family to Somerset, weather wasn't fab but it was so good to feel 'normal' for a while. Did 2 long walks, one was a long climb- realised my strength isn't what it was pre chemo. Came home yesterday and the pre chemo clouds began to form-2nd docetaxol on Tuesday😫really not looking forward to bone pain and horrid mouth- taste returned last week, was soooo good to taste again. 

Hows everyone doing on 2nd docetaxol? Is it slightly easy on se? 

Hugs to all x

[Hets67]

Hi all, sorry I’ve been radio silent. Had my mum and sisters to stay which was lovely but so exhausting. This chemo journey is becoming so long - my chemo on Thursday was delayed by a week because my white blood cell count was v v low. Good job I’m staying quite isolated but going slightly crazy in the process!! Xxxx

[Shi]

Hi Linda, sorry can’t help with ultrasound details but on the knitted knocker, I just pulled the stuffing out of mine and shape it round my smaller boob that it is now to level things up, it’s been a delight in the hot weather I can tell you, it sits just fine in a normal bra without the pouch. Also your breast unit should provide you with a partial ‘chicken fillet’ ask to see the person at your unit, they will make you an appointment 😘😘hope that helps 💕💕✨✨shi xx

[Linda Corinne]

Had a call today following the MDT meeting yesterday about my ultrasound. I was told I would have a 6th cycle on wednesday. I asked re a 7th as was told they were aiming for at least 6 but 7 were booked in and discussed.i did assume I would have 7 as I was told to assume that and as the side effects have not been too bad and the size has decreased from 42 to 32 on the us that a 7th would be beneficial to minimise surgery which is a TM. They did say they were aiming for the size to be high 40s as was 51 on mri. So pro rata its 39. So does anyone know how they decide as I just want to know when this Hell on earth will end for sure?
Got my knitted knocker today. How does it work for breast conserving surgery? I assume you remove some stuffing and fold over the knitted part.
Ta.hope all ok.x

[Shi]

Hot was should have been hot wax ladies, oooeeerrr I bet you all thought we’ll pass on the hot was shi😂🤣😂🤣😂🤣😂🤣sorry about the typo 😘😘💕💕✨✨✨shi xx

[Shi]

Ladies captain costas sent me down the aisle to get you all in the spa at the back of the plane❤️❤️So nice bit of reflexology, float tanks, lit by tea lights and tranquil music playing, hot was hand and foot manicure and pedicure and facials 😘😘😘enjoy and pamper 💪💪💪💪beautiful ladies, you are completely big into land soon, so he wants to spoil you before you get your make up on when you 🛎 🛎 🛎 the Bell as you leave the plane soon 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻💕💕💕✨✨✨shi xx

[tanya]

Hi everyone hope all ok ❤️ Today is day 6 of second T and feeling ok legs are getting very heavy and my mouth isn't as bad as it has been on every other cycle. Today I had my radiotherapy appointment for scan and tattooing but no start date for me as of yet, but still have 1 T left on the 24th of this month. Having my treatment reduced by 20% has been a blessing and so much more manageable . No rashes no pins and needles in my feet .I also had my steroids upped to help but off them now so waiting for the crash !! My hair is still growing but by God have I gone grey. We're all getting closer to the finishing line the light at the end of the tunnel is in sight. Tracey glad u are starting to feel better and home from hospital. Sending hugs to everyone xxx

[Tropic_al]

Evening all,

Tracey I'm day 10 and just about getting energy back, although I can't decide if it is the Docetaxel, Herceptin or Permuzutab that is making me worse yet. Hopefully docetaxel as that ends in two cycles. Went for a longer walk today as only 24 degrees and breezy and need to up the exercise. what a treat! 10 drops of rain fell so no change there. It is so pleasant though. 

Does anyone else get tears and more emotional in their low immune week in particular?I was like a cartoon character last night with tears leaking out of the sides of my eyes when I went to bed which resulted in a bad night's sleep 😭. Early night tonight.

Working more this week which is good for keeping busy but can forget to rest so less tomorrow I think and may even open a book...haven't read a page of one since April!

Those of you who are ahead of me I hope all goes well if you have chemo pending this week.

Some of us are coming in to land..not me just yet but we're getting there.

keep strong ladies

Tropic

[Tracey Mac]

How are you doing Tanya after 2nd T, hope the side effects are kinder to you this time around, you suffered such a long time on your 1st. I am day 9 after 1st T and it has really wiped me out. Still having bone pain and mouth issues and can't shake the fatigue.
I had my radiation appt yesterday for scan and tattoo placement. I should start treatment around October 4th after chemo all finished. The staff st the department were lovely. I think you are there this week Tanya?
Michelle21, I had mastectomy in March and chemo - 3 FEC and 3 T so not quite the same regime as you. Glad to hear your tumours are down to nothing, it makes the side effect endurance worth while.
Well the sun is shining, my only plans for the day is to avoid people and protect my immune system so here is to a day of relaxation, reading, drinking plenty and finding something to eat that doesn't taste like sludge 🍍🍉🍲

[Linda Corinne]

Just read an artcle After the treatment finishes what then? by Dr Peter Harvey.worth a read and will save to read again too.x

[Michelle21]

Hi Tracey I seem to remember you are on herceptin/Perjeta? I’m also on that combo and I’ve just finished chemo. I am being treated at Velindre. I had a mammogram and ultrasound last week and the consultant said the tumours have gone down to nothing (from 2.8cm). They said they are having great results from Perjeta and have decided to give me a lumpectomy now instead of a mastectomy! Have you had your halfway scan yet? That is always a good pick me up in chemo. Glad to hear you are feeling better x

[Tracey Mac]

Thanks Tropic, starting to feel better today, it has been a tough week.
Great news Linda, makes the side effects more worthwhile hearing good news like this.
Taste changes are irritating and trying not honest my favourite foods as some ofnypu have recommended so that we don't go off them after chemo is finished.
Still getting bone pain but so much more manageable.
Fatigue is challenging but rest, rest, rest and plan the party with Shi xx

[JacqB]

Great news Linda
Docetaxel May have a sting in it’s tail but it’s definitely worth it.
Jacq x

[Linda Corinne]

Just had an ultrasound and its now about a quarter of the size it was so it looks like its responding well to docataxel! Nice to have some good news.x

[Tropic_al]

Hi all,

Hope you're all well today..especially you Tracey..rough few days.

my weekend was spent feeling a bit rough, mainly the mouth taste and feel from the docetaxel making me feel a bit sick I think. Food tastes have changed completely so now not really enjoying it at all which is a shame as I am a girl who loves her food! Feel a bit more energetic today on day 8, first antibiotic day so hoping I'm on the up..although I was up at 5 because I was too hot so snooze time in a while!

This cycle seems to be going so much slower than the others..hoping the next ones are not too bad.

Attempting to do a bit of work today..have a good day ladies.

That spa is sounding fab Shi! ❤️

Tropic x

[Shi]

❤️❤️❤️ladies so pleased to hear you are ok and you got yourselves checked out 👍👍👍nice and safe, I’m just coming down the aisle as captain costas has opened the spa at the back of the plane for those that have had a casa nhs wing walk and you’ve to follow me there for a bit of a pamper and special captain costas cocktail of 👍👍👍we’re winning with a cherry on top ❤️❤️❤️ duty free trolly round soon as you will be completely big into land soon, don’t forget to ring those bells 🛎🛎🛎🛎🛎💕💕✨✨✨shi xx

[Tracey Mac]

Thank you Jaq and Jem. I am now home with a normal temp and neutrophils climbing. Unsure of the cause of infection but glad I got it checked out. Nice to be home and rest xx

[Linda Corinne]

Jempd yes I did get some manuka honey from marks but the 15+ as thought that was the best as there is a marks food shop near me that's open until 8 on sat so we treated ourselves to salmon and broccoli quiche frozen salmon and some pastry for my hubbie.

I ordered a knitted knocker yesterday as it can take 4 weeks for after my op in case I look asymmetrical as having TM soon. Should find out this week when chemo ends and then when op is at some point soon.

Watched first episode of Orange is the new black as there's a new series out on Netflix. Can't wait for Made in Chelsea on Monday.

Had a bite under my armpit that was a lump on Thursday but it seems to have gone down now and is healing thank goodness.

my bro his wife and son are here for 2 nights next weekend from Brisbane so looking forward to that.

Weather was 27 in Somerset yesterday but I don't think it's going to last much longer.

Hope everyone is feeling better today. 31 days to go until chemo ends or less if 1 more! 

My mate is in Ibiza and says its too hot so maybe best to be in uk at the mo.x

[JemPD]

Tracey so sorry your in Casa NHS. Hope you are feeling ok this morning.
Take care Jem x

[JacqB]

Sorry to hear you e been admitted Tracey, I’ve got everything crossed that it doesn’t happen to me for the third time. My oncologist reduced the dose of T by 10% for my fourth cycle so you never know. 🤞
Hope you get home today.
All best wishes
Jacq x

[Tracey Mac]

Sitting up in my hospital bed in Velindre. Got a temp of 38 last night, no obvious signs of infection but I am here on iv antibiotics for the night. Hopefully bloods will be back to normal and home in the morning.
Never a dull moment on this chemo journey but so glad to be able to share it with all of you lovely ladies.

[JemPD]

Hi I hope se effects for all have been good to you today. It’s been busy here but was good to feel ‘normal’ again.
Never thought I’d be excited that I need to shave my legs 😊.
Leanne - the plan is for me to have rads as I had small margins after my mx. Did you have good margins? If so I’m guessing why you won’t needs rads.
Linda re Manuka honey- if you put ‘which Manuka honey is really good for you’ into google an article from Daily Mail is really informative. I have M and S Manuka honey.
Take care, we can ✅ off another day- Greece get ready we’re on our way 😂