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November 2019 Chemo Starters

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Re: November 2019 Chemo Starters

Hi KC

just sat down now as was in the hospital for about 4 and 1/2 hours. I had the cold cap which was ok, but as it was a small size it was really pressing on my forehead. The nurse said maybe I get a soft hair band next time and use some gauze to pads it, I will just have to see how it goes with my hair.

when I visited yesterday they did my bloods and gave me a sickness tablet, which is suppose to last 5 days and also steroids , which I had to take one hour before I got to the hospital. It was only when the red devil part of the chemo was put in by the nurse that I felt a bit sick and lighted headed, but the other 3 were ok. 

I have been in the shower and had something to eat no feel ok, feel a little bit nauseous, but we shall see what tomorrow brings and the days after, I am under no illusion that I am going to get away scot free๐Ÿ™๐Ÿ™๐Ÿ™. Good yours went ok, shame about your hubby not being able to be with you, but nice the nurse could. We will get through this journey the same as all the lovely ladies on here. 

 

Twinkle great news for you xx

Member

Re: November 2019 Chemo Starters

First chem done and dusted , feel much better now its started , all went ok I couldn't let hubby in as he was full of cold so I made him stay in the corridor , however a nurse stayed with me throughout, came away with a myriad of pills and warning re side effects , it's a bit like waiting for a bomb to go off . Feel fine tiny bit wooshy but not bad , not sure what I expected really , just nice to get started ( not sure nice is best word) 

Hope your ok Chris ? We are on the bus now !!! We will get through this journey xxx

KC xxx 

nmm
Member

Re: November 2019 Chemo Starters

Iโ€™m in my late 40s too but we mรฉnopause super late in my family - my sister is 59 and she just stopped getting her periods this year.  I have really mixed feelings about being on tamoxifen too. The tumor is progesterone and estrogen positive so I know they will want me on it but it really freaks me out to think about taking something like that for five or ten years. Iโ€™ve already gotten serious about avoiding as many environmental estrogens, upping my flax and chia and cruciferous vegetable intake etc but the medical world makes it sound like not taking it would be dangerous...

Member

Re: November 2019 Chemo Starters

Hi Nmm

 

I was told that my periods may stop on Chemo...I suppose it may be temporary?

I started my last period as I went to do a wee before my first shot of Chemo, which was a nice present from my body! So it will be interesting to see if that was my last...I am 45 so I was expecting things to pack up in that department over the next few years...however I was broody occasionally until I was about 40..so if I was younger, I think I would feel really sad about being chemically sterilised.

 

Having said that, there was a pregnant woman on my chemo ward the other day....I presume she got pregnant before her diagnosis...they just wait to start chemo until the foetus is old enough to survive it...I can't imagine having to go through chemo whilst pregnant.

 

 Obviously the majority of us will be put on Tamoxifen afterwards anyway, unless we are triple negative or ER-, HER+.

 

I don't mind not having any more periods- I do really mind having all my oestrogen blocked, as oestrogen makes you feel good. I know oestrogen is the enemy of anyone with an ER+ cancer, but I hate the thought of my body being hormonally messed with.

 

nmm
Member

Re: November 2019 Chemo Starters

That is fantastic news twinkle!

I had a rough night of not much sleep and feeling a bit yuck this morning.  And my period is quite late - itโ€™s been 35 days and Iโ€™m quite regular at 28-31 days.  I donโ€™t even want to google this, I suppose itโ€™s a side effect of the chemo?  The thought of this shutting down my ovaries is more upsetting than I would have thought.

Member

Re: November 2019 Chemo Starters

Dear Twinkle

 

That is genuinely fantastic news.

Not just that you don't need to have chemo- but also that your cancer would not benefit from it..which is really good news for you in the long term!

 

You must be breathing a huge sigh of relief!!

 

 

Member

Re: November 2019 Chemo Starters

Dear all,

I had a crazy day today. Went to all the pre chemo sessions, bloods re do, picked up all the chemo meds etc. Was at hospital about three hours in the end. Then this afternoon I had a call to say I was randomised for selection on the optima trial (tumour gene test) and they have just recommended radiotherapy and hormone therapy (monthly injections and tamoxifen). I canโ€™t quite believe it! I went from being so scared to chemo being cancelled it has been a whirlwind day.

Anyway, just wanted to say really best of luck to all you ladies on this thread - but I now will be going to radiotherapy prep session tomorrow and starting next week - so I wonโ€™t be posting on here. May just check in now and then to see how you are. 
Thanks again for all the support xxx

Shi Community Champion
Community Champion

Re: November 2019 Chemo Starters

Afraid you will all have to probably get used to the bouncing off the walls insomnia while on the steroids, we just all ended up chatting on the thread at all hours, you could too, it good to know you are bouncing together ๐Ÿ˜well thatโ€™s what we found anyway, at one point we were discussing music just for a change we were the party thread and the Mac Donaldโ€™s, Mac Donaldโ€™s Kentucky fried chicken and a pizza hut song got uploaded because we all had the steroid induced munchies in the middle of the night ๐Ÿ˜just go with it everyone and just sleep when your body tells you to, your body clock can go out of sync a bit, but any concerns about sleep please discuss with your units ๐Ÿ‘๐Ÿ’•๐Ÿ’•โœจโœจShi xx

nmm
Member

Re: November 2019 Chemo Starters

Thanks for the suggestion Helen and Viv!  I donโ€™t think thereโ€™s delivery where I am but I could at least order on line and then Iโ€™d just have to go to the pick up place.  Will definitely look into that. I actually had the courage to bake tonight (grain free sugar free vegan pumpkin flax loaf) in anticipation of the fast ending tomorrow lunchtime.  

 

Insomnia - itโ€™s a real chemo thing isnโ€™t it.  If anyone has any fab suggestions, please share!  The night after every treatment I wake up at 3 and canโ€™t sleep anymore...

Hugs all!

Member

Re: November 2019 Chemo Starters

Hi everyone and hello Helen, thank you for your lovely message.

I am def mentally better, still zonked but went to a pals for Sunday dinner yesterday and managed a walk and making tea tonight. Steroids finished so will no doubt be going down for a few days...have a few netflix programmes waiting for me...

The mice are still around and ate all my emergency liquorice rations and pooped all over my lemon sherbets....๐Ÿ˜ก. 

Insomnia has set in so am pleading for a whole night sleep tonight.

 Yes nmm, glad your treatment going well but would agree with online shopping if that's an option. 

My daughter was off ill today with sore throat and chest infection (yes the whole house is lurgified...) so had our 1st Christmas movie afternoon...๐ŸŽ…...

Dog's been for a haircut to match mine and husband has spring cleaned the living room. Now if we could just have some sunshine that would be great.

Good luck tomorrow girlies, and welcome to the chemo mental rollercoaster....

Hugs to all xx

Member

Re: November 2019 Chemo Starters

Well done nmm. 

 

Have you thought of online shopping for food - it is my gift I give to myself every week!

 

Good luck tomorrow KC and Chris.. Glad the tortuous wait is nearly over ๐Ÿ€๐Ÿคž

nmm
Member

Re: November 2019 Chemo Starters

It's so good to hear from everyone even if the news isn't always glorious.  I just had the first weekly treatment of round 2, still fasting before and after and so far I haven't lost any hair (cold capping).  Had grand plans when I came home this morning from treatment because I was so jacked up on cortisone but my afternoon quickly turned into just me sitting on the couch.  Have to grocery shop tomorrow (I'm alone at home with my younger son) and that feels pretty ambitious Smiley Sad

Hugs to all of you <3

 

Member

Re: November 2019 Chemo Starters

Hi Chris I'm just home , I'm not sure how I feel , I'm a nurse by trade (recently retired)  but nothing prepares you for being on the receiving end of treatment and I'm not sure we make good patients! 

 

I couldn't believe how busy it was they see up to 80 patients a day for chemo ๐Ÿ˜ณ it's such a busy place came away with a whole array of more information so some homework tonight .

 

Good luck for tomorrow to Chris 

๐Ÿ’•KC xx

Member

Re: November 2019 Chemo Starters

Hi ladies hope everyone ok on the horrible wet day.

Well been to visit the chemo unit today and has defiantly helped a little with my anxiety. the nurses were lovely and explained everything, was there about 2 hours. I'm still not feeling 100% about it, but hopefully less anxious than I was. 

I actually treat myself to a slice of lemon drizzle cake and a hot chocolate and why not Smiley Happy 

 

KC hoping yours goes well tomorrow let me know how you got on? 

 

Sending hugs to all

 

Chrisy xx

Member

Re: November 2019 Chemo Starters

Hi Viv

 

Hope you are starting to feel better.. You have been so fabulous at keeping everyone up in the group you deserve a break... The mouse attack must have felt like a kick in the teeth.. Its Sods Law in action again!

 

Anyone who has lost or removed their hair suffering from Phantom Hair Syndrome? .. I keep picking up hair bobbles to put my hair up.. Then remembering it's a pointless exercise ๐Ÿ˜‚

 

To all of us strong women who can't be strong all the time... Let other strong women carry you along โค๏ธ (sorry I realised that is a bit sexist as men can get BC too.. For women substitute people if necessary!) 

Member

Re: November 2019 Chemo Starters

Thank you for all your hugs guys. Guess I've been trying to be strong for everyone else and holding it together. You've made me feel better..๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š

Xx

Member

Re: November 2019 Chemo Starters

2DD50DA6-7986-4CE4-880D-7CC8C2ECC16A.jpegViv xxx

Member

Re: November 2019 Chemo Starters

Hi Viv,

Just to send you a hug.

A good cry does you good, itโ€™s all so sh**e that we have to go through this, but I hope you have a better day today. X

Member

Re: November 2019 Chemo Starters

You're right Helen, sorry for the rant and thank you for your wise words ๐Ÿ˜ŠStill on steroids but not sure they agree with me either. Oncologist did say he would look at my dosage if I was still wiped this 2nd round. Guess my tumour is pretty big so maybe going for hard treatment. Have 4 x EC then 4 x Docetaxal plus Herceptin + Pertuzumabad followed by 12 x Herceptin + Pertuzumabad. Not sure where my surgery will fit in yet. 

Everyone here is dealing with so many things in life on top of this monster and take my hat of to all of you...

Think it just finally hit me yesterday, the enormity of what we are all going through..

Lots of hugs to all of you

Xx

Ps. Last rant...my food storage cupboard was attacked mice last night. Excellent...that will need to be scrubbed out and mice exterminated...the joys of living next to a field in winter...๐Ÿ๐Ÿ€โ˜ 

Member

Re: November 2019 Chemo Starters

Hi Viv

 

Sorry you are feeling **bleep**ty.. It is still early days in your second cycle so am crossing everything that you get to feeling more normal soon xx,

 

Are they giving you enough steroids to get through the initial bit?

Remember, though it may feel far away, you will still get to that week of blissful normality before round 3 ๐Ÿคž

So many things must influence how we react... We are all on different regimes, some of us still have tumours in our breasts, some of us have had major surgery, some of us have younger children (which is hard work when you are not ill). Then we have all come to this treatment with differing levels of fitness and health... I get the feeling that younger and healthier people with early stage BC get slammed with a tougher regime to maximise effectiveness.... 

 

Member

Re: November 2019 Chemo Starters

The cold cap can work . I lost probably 40 per cent of my hair but it was not noticeable to an observer and it is now all restored five months later . ! Please go with the chemo I had tachycardia attack for one of my ECGs was so scared but you will get through . Good luck ! 

Member

Re: November 2019 Chemo Starters

Hi Twinklestar, I only drove last week of my cycle. Think I am one of the unfortunate ones that have been wiped by chemo and am in the minority. Day 4 after 2nd round of EC and am forcing myself to move round the house.. def wonky, woozy and out of it. Sounds like alot of you are not having major side effects so am very envious... had a really bad day yesterday after all my positive posts and cried most of the time. It's raining and it's gloomy and I felt like rubbish...

Right going to force myself out of bed and try to do something useful...

Xx

 

Member

Re: November 2019 Chemo Starters

Hi Twinkle 

 

I started driving about 3 days later.... 

It is more to do with your ability to concentrate compared to surgery. I also make sure I have water on me. 

 

I haven't started riding my bike again yet.. I live in an inner city area of no rules, bonkers driving and you have to cycle really assertively.. Just dont feel mentally ready for it yet... I may give it a whirl next week as am still feeling pretty good xxxxx

 

 

 

 

Member

Re: November 2019 Chemo Starters

Hi Chis

My Mum had alzheimers in the last 10 years of her life.. And though she didn't know much about what was going on, she could still pick up on emotional stuff and gave better hugs than ever beforeH ๐Ÿค— How lovely that he asked you how you were... I know how much those little gestures mean โค๏ธ

 

Keep strong those who are starting next week.. At least the waiting is nearly over... 

Member

Re: November 2019 Chemo Starters

Hi twinklestar, I finished my chemo in October and didnโ€™t stop driving at all, i didn't drive myself to chemo as I had enough offers but I could have done so very easily. I had 3 x ec and 3 x docetaxel. 

I only had a lumpectomy and therapeutic mastectomy, had the op on a Wednesday, drove on Friday, back to work Tuesday, so not as serious as yourself.  

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Re: November 2019 Chemo Starters

Good luck on Tuesday ladies xx you will rock that chemo chair xx 

Member

Re: November 2019 Chemo Starters

Hi KC

mine 12.45 but had a meeting with my manager before hand so double whammy. Will let you know how it goes

chrisy xx

Member

Re: November 2019 Chemo Starters

Those of you who have done a cycle - have you still be able to drive at all at any point? My oncologist said it would be fine...but wondering if thereโ€™s ever a point youโ€™d be able? I felt so liberated after picking up driving after 6 weeks not post surgery.

 

 

Member

Re: November 2019 Chemo Starters

Good luck for Tues KC and Chris xx

Member

Re: November 2019 Chemo Starters

Hi Chris hang in there, just a couple of days to go, I will be there as well we can get through this ,let me know how your assessment goes tomorrow I'm  There at 4 pm 

 

๐Ÿ’•KC x

Member

Re: November 2019 Chemo Starters

Thanks Lisa for your good wishes

i am high anxious and feel like shedding good few tears as I have just come back from seeing my Dad as he's 83 on Monday. I haven't seen him for a few weeks as he has Alzheimer's, ne when I went in he asked how I was bless him. I think he understands that I am going through chemo, but don't think he fully understands, if you know what I mean.  I just wish Tuesday was here 

chrisy xx

Member

Re: November 2019 Chemo Starters

I've had absolutely no problems besides some pectoral muscle pain the week after surgery which went quite quickly. That was over a month ago. This is really useful to know and probably a lesson for me in paying more attention... I had 5 nodes removed for biopsy all were clear of cancer. I'm seeing my surgeon on Wednesday so I'm going to ask her about this. Thank you x

Member

Re: November 2019 Chemo Starters

canโ€™t get the photo to upload the right way!!!!

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Re: November 2019 Chemo Starters

I realise Iโ€™ve being spelling it incorrectly! Itโ€™s lymphoedema and axillary on my info sheet! I donโ€™t think youโ€™re as at risk as me with the biopsy, but it does mention it here. Have you had any discomfort from the lymph biopsy? My arm pin is awful image.jpg

 

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Re: November 2019 Chemo Starters

I'd suspected it was lymphoedema related but no, I can't remember anybody actually telling me that. To be honest I have zoned out a lot during appointments so maybe they did say so but not that I can remember. Thanks for telling me!! That sucks. I was really upset at the risk of lymphoedema when I was told about the surgery so, ugh. It just seems like neverending doom and gloom!!! 

Member

Re: November 2019 Chemo Starters

Vaneysha -I had auxiliary lymph node clearance and also now can not have bloods/boos pressure taken EVER on that arm. Itโ€™s because itโ€™s now at risk of lymphodema/ Iโ€™m surprised no one has explained this to you??? Iโ€™ve had two apps now with a specialist nurse. My arm is the bit giving me the most probs rather than the boob surgery. The reason for not taking blood is because your lymph nodes have been affected you are at more risk of infection- which leads to swelling and possibly lymphodema xxxx

Member

Re: November 2019 Chemo Starters

The cardiologist in hosp said he didn't see any reason to delay chemo but oncology seem to disagree until another doctor says OK, exasperating but I just have to roll with it. I've discovered that cancer is my personality's nemesis. I'm hugely impatient, stubborn, proud, anxiety prone and most of all vain!! Hair is everything to me (in fact how I look in general) not just having hair but the concept of looking vulnerable in any way makes me completely shut down. So cancer and treatment is basically my worst nightmare and I'm becoming my doctors' worst nightmare because of it. Quite the learning curve at 33 but Im really trying to get through. 

Member

Re: November 2019 Chemo Starters

Vaneysha my heart goes out to you, I have some heart issues discovered before the bc diagnosis, there was talk of a pacemaker being fitted. However oncologist is aware of it all and says theyโ€™ll just keep an extra eye on ECG results etc. She saw no reason not to go ahead with the chemo. Theyโ€™re the experts in their fields not me, so I bow their knowledge. 
Ive never been precious about my hair so  donโ€™t have the same feelings as you regarding that. I do not think I can brave the shave, that makes me feel quite teary just to think about it. Of course I might change my mind when it just looks a frightful mess lol xx 

 

Whatever decision you come to is for you to make, sending you lots of hugs and strength xx

Member

Re: November 2019 Chemo Starters

It's a 6 to 8 week wait for cardiologist on the NHS which is obviously too long to hang around for chemo (especially after I've been putting it off for closing on 3 weeks now already). I can get it privately but it's more insurance forms and referrals and time wasting. I'm absolutely sure my heart is fine and ive stopped that drug now. I've never felt so conflicted about wanting something to start and not start at the same time. Yes the hair is still the Thing and I'm seeing all these posts of you brave ladies shaving it all off and just knowing I could never ever do that, I'll be the one sobbing in the shower as it all comes out. Knowing i have to wait longer for chemo now makes me keep changing my mind over and over, I go through every emotion every couple of hours. My poor husband!! 

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Re: November 2019 Chemo Starters

Sorry to hear you are going through all this mental anguish Vaneysha, but really hope everything gets sorted quickly. I know your hair is a major cause of anxiety for you but once you can overcome that side it will help you deal with everything a little better. Your hair will come back and it really is such a short period of your life..

I agree that your anxiety pills can be affecting your heart rate and hopefully you'll see cardiologist soon and get your chemo started. 

Please look after yourself and keep us updated on how you get on

Big hug 

Xx

Member

Re: November 2019 Chemo Starters

VivMc 

 

I've got to have the targeted bit (paclitaxel?) with herceptin as well as EC. I realised early on that reading the side effects is making me worse with the anxiety, totally get it.

 

I also have really tiny veins!! All the more traumatic in A&e the other day trying to do blood tests and cannulas. Apparently they wouldn't touch my right arm at all because I had the sentinel node biopsy on that side? I'm not sure why. Not even blood pressure monitor. Just meant that by the time I left, all the veins in my left arm had collapsed as well as my freshly inserted picc line which is there too, bruised to hell, no fun at all. 

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Re: November 2019 Chemo Starters

Yay, Debknits, that's such good news about side effects....I think I had more side effects from the sickness drugs and my neulasta jab than the chemo.

Pass on your energy to the rest of us

Xx

 

Member

Re: November 2019 Chemo Starters

Chrisy and KC, hugs to you both, all the waiting and not knowing what it will be like is really awful. I hope it goes well and you can have some smiles as well as any tears this weekend x

Member

Re: November 2019 Chemo Starters

Hi Helen of rum (and everyone else)

 

I wrote in here about a week ago when my first EC chemo was scheduled for Wednesday just gone. I was absolutely petrified and in the end they decided I wasn't mentally ready for it. Quite a lot has happened since that, including an unexpected A&E and hospital stay when my heart went bonkers on Wed afternoon (when I was meant to be having chemo but didn't) they didn't know what it was but after i was discharged the next day it happened again and I figured out it was a reaction to one of the mood stabiliser drugs I was prescribed after i was diagnosed with cancer. I now can't get chemo until I'm okayed by a cardiologist and since then my mind has flipped and I just want it over and done with. It's so frustrating. I still don't want to have chemo but I also can't bear any more hanging around! I've been following this thread and I really do appreciate you saying chemo isn't as bad as people think it is. A lot of people have told me that but I won't believe them but hearing it coming from people actually going through it really helps. To be honest I could handle feeling like crap but I'm just really, really upset over losing my hair and the scalp cooling cap not working. That isn't in anybody's control (which makes it harder). I  highly doubt I will be a November chemo starter now at this rate but its been really good to hear your experiences. When I do eventually start, your experiences have really helped me be a tiny bit less afraid. 

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Re: November 2019 Chemo Starters

That sounds tough twinklestar; may Monday come soon and I hope itโ€™s the result you want x

Member

Re: November 2019 Chemo Starters

I also just made the mistake of reading side effects for my next chemo in January with the combined Her2 targeted treatment which freaked me out badly so am making the most of the not as bad EC chemo, ha ha

Xx

Member

Re: November 2019 Chemo Starters

Hi ladies,

Sending you all positive thoughts. 

I had a breakdown before chemo on Wednesday, 1st proper cry I've had. The nurses were lovely and all gave me hugs but it's def a rollercoaster....

So happy you are feeling 85% Helen, enjoy the kitchen dancing. I thinkbI could have managed one before having a sit down, ha ha. 

I've developed a twitch in one of my eyes so that goes really well with the bald look.

Sorry about your bad experience at the docs and your small veins...and that your son was waiting for you outside. I am just trying to hold it together for my babies, it's hard but it keeps me from breaking down..

And yes Helen, this damn stuff is killing those cells so let's all ride this roller coaster together and come out stronger women at the other side.

Xx

 

Member

Re: November 2019 Chemo Starters

Hi Viv,

Iโ€™m definitely feeling better today than yesterday, although still nauseous but more bearable today. Since lunchtime yesterday I have only managed a handful of ginger biscuits and some dry toast so need to eat more today. Fishfingers sound good. X

Member

Re: November 2019 Chemo Starters

Canโ€™t believe cycle 1 is almost done! Definitely was no where as bad as I had read about. Lots of side effects but nothing that had me taking to bed. Had lots of naps as needed, and let my body do the talking. 
Everyone who sees me canโ€™t believe how well I look and I really do feel well ( bizarre when you think of whatโ€™s going on inside lol)

Anyhoo keep that chemo chair ready for me on Wednesday Iโ€™m ready to kick ass again lol x 

 

Member

Re: November 2019 Chemo Starters

Dear Twinkle

I have everything crossed that you won't need chemo....but once you know next week at least you can have certainty. I too have found out I have tiny veins.. Thank you body!! 

To all those in the chemo waiting room... It must feel like the sword of damocles is hanging over your head... But you will be so relieved next week once it has started, as we can tell you from the other side that it isn't as bad as everyone makes out.

Admittedly it will never catch on as a  recreational drug, but it is manageable. 

I go into ward 621 (Chemo land) and I see really elderly and ill people, and I feel like a healthy youngster!! 

As my friend says.. Surrender to the treatment as much as you can... This is all for a very positive reason.. We are killing cancer cells and making our bodies a hostile environment for them ๐Ÿ’ช