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November 2019 Chemo Starters

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Re: November 2019 Chemo Starters

Great news that it went smoothly Helen despite the really long delay...that is really rubbish regarding the 2 chemo wards, always amazes me how the nurses and staff keep going and juggle everyone and everything...

Looking forward to your crochet efforts, I feel like I need to take up a hobby.

I have bought journals to write stories for my kids. I have meant to do it for years so guess now's a good a time as any...although now what you mean, my words are jumbled for at least a week after Chemo!!

Hope everyone is having a good weekend.

Xx

Member

Re: November 2019 Chemo Starters

Hi All

 

First treatment down...feeling much better than I thought.

I was meant to start at 1.45..but started in the chair nearly 3 hours later, finished at 7ish. Apparently the nurses call it Black Friday as there are alot of people with complicated and long regimens who come every three weeks on a Friday! Also our hospital is now having to serve two extra inner city hospitals who have closed their chemo wards...I won't say anything political..... They were multitasking like crazy but still managed to be cheerful and informative. The good side of waiting was the chatting and comaradery between everyone....My anxiety melted away. The only think is I got a slight sting with the E when it went in but that may have been from the freshly sterilised PICC.

 

I feel a bit spacey and lacking in appetite. No nausea so far. I fed the dog twice (she isn't complaining!), and have been doing lots of word switching and weird spellings..this must be the start of chemo brain...

 

So I totally understand why foot could look like front...lucky Mini the rabbit to be named twice !!! You are very skilful Debs...I am crocheting some Christmas presents this year..but I am , by comparison, a bit basic !!

Member

Re: November 2019 Chemo Starters

Great to hear your 1st one went well Nhlanhla, can't believe you had an exam. 

And love the rabbit Debknits!!

Xx

Member

Re: November 2019 Chemo Starters

Yes, forgot to say thank you for your positive messages and thoughts mini mad, always good to hearfrom someone who has come out the other side. I guess there are so many side ffects we don't think about but happy you are doing well and have hair 😊

Xx

Member

Re: November 2019 Chemo Starters

Hi Nhlanhla,

Glad to hear it went ok, hope you had a good day and fingers crossed for the rest of your cycle. 

What exam are you doing?

Lisa x

Member

Re: November 2019 Chemo Starters

Ouch Debs, that doesn’t sound nice... I hope it gets better soon!

I love your Mini bunny x

nmm
Member

Re: November 2019 Chemo Starters

Mini mad - loved your update and yay for all the things that are growing back and healing.  It’s super inspiring to hear.  

Member

Re: November 2019 Chemo Starters

I had the warm bag too, in fact I had two lol. as they were running behind. 

Member

Re: November 2019 Chemo Starters

2C740319-4B6D-483E-BEEE-25D2CE9FC405.jpegMini the rabbit

I popped this in the post this morning. Customer asked for the name MINI to be embroidered on the front: I read it three times as β€œfoot β€œ

lol

Gladly customer understood  my mixed up brain and was happy with the results 

Member

Re: November 2019 Chemo Starters

Hello Debs,

There are so many little things that you wouldn't think about! Glad it's nothing serious. I just can't believe how woozy I am by the end of the day, Onc told me it was fatigue and just to rest. What am I going to be like after 8 cycles of chemo..a zombie no doubt, ha ha.

Glad it's not just me having cannula. I get a hot bag on it for about an hour on my hand to get ny veins up while my premed antisickness get to work so quite pleasant...

Have you knitted anything recently?

My mum came up from London and bought me about  different hats to wear πŸ˜‚.

Xx

 

 

Member

Re: November 2019 Chemo Starters

Hi Viv

i get my 2nd on 27th so you’re a week ahead of me. 
I had a cannula too.

 

had to phone the team this morning for advice. I have a swelling in front of my ear sling the jawbone, very painful too. Temperature normal. 

They were not concerned at all. Said blocked salivary glands are quite common and as long as temp remains normal and I can swallow, not to worry. 
warm compress. Massage, drinks and paracetamol. And call back if it gets worse or temperature changes. 

Member

Re: November 2019 Chemo Starters

Hi nmm,

 

im from the june 2019 chemo posts and i am now nearly 3 months post treatment.

the time actually went quite quickly.

i had Triple Negative bc ( twice in 2 years ) Paclitaxel once every week for 12 weeksand Carboplatin once a week,  every 3 weeks.  Oh and also Filgrastim tummy injctions and now Zoladronic acid iv every 6 months for next 2 years.

 

i have a full head of hair albeit short,  my eyebrows have returned πŸ‘ and my eyelashes are slowly growing πŸ‘πŸ‘πŸ‘

i am still tired but not as much ,  pains still in my legs but again not bad like before.

still have tingly toes and ocassionally i get slight numbness around my left eye and cheek.

i have my 3 month check up with my chemo dr next week and will mention this but the side effects i guess while last for a while yet but i cant really complain,  compared to others on here.

so keep going ladies,  there is an end to all this..... one day at a time.

mini mad xx πŸ’–πŸ’–

Member

Re: November 2019 Chemo Starters

Morning sisters, I also went for my 1st chemo yesterday.EC. The whole process wasn't as scary as I had anticipated. I had a headache and took Panado. I actually slept well except for my mouth feeling dry so I drank water and chew minty gums. It's the morning and I feel ok still. Wanted to go write my exam but don't want to risk catching something so I'll just walk, have breakfast and relax. 

Member

Re: November 2019 Chemo Starters

Hi Chris,

A journal us def a good idea. I had good intentions and my journal is blank...

Am going to attempt to fill it in tomorrow!! My mum has come to visit and is talking so much I may not have any peace to do it..

Keep that anxiety in check, it gets all of us. I got anxious today because I ate ham that had been open in the fridge for 2 days and then convinced myself it would make me ill. Seriously. Anytime my kids cough or sneeze I'm like, are you ill? Think it will get better.

Keep deep breathing...

Sending lots of happy thoughts

Xx

Member

Re: November 2019 Chemo Starters

Evening ladies, 

Welcome to chemo Flou, hope you have restful night. I have 2nd round on 20th so will be on a similar cycle with you Lisa. Welcome Twinkle..

Yes hard not being able to reply to individual messages so please forgive me if I forget who wrote what!!

Interesting regrading infection talk and video Lisa, I had no talk and no video, just told not to shut myself away and use hand gel, ha ha. I have a dog and just told not to let him lick wounds etc and watch when picking up poop! Again re germs, I have kids and told that again, can't shut away from them either!

One thing I was going to ask? Am I the only one not getting a PICC line? Was told I would just get cannula n my hand...not sure if that is aScottish thing...

Man, I am going to get germ anxiety I reckon. My hubby started sneezing yesterday and I spent all night worrying he was breathing bugs all over me, ha ha. Going Christmas shopping tomorrow while I still have energy..

Also I am drinking so much my water I spend half my day peeing.

Lots of love to all of you....

Xx

 

Member

Re: November 2019 Chemo Starters

Hi everyone, 

Just a quick update I had my first cycle today, EC every fortnight to start. Γ“veas in and out in 1.5 hrs, as always the nurses were lovely and gave lots of info. 
i also met some great comrades in there.

i left about 1pm feeling fine and went home and had some soup.

About 4 I started feeling a bit queasy so took one of the meds they sent me with and had a couple of gin-gins. I had an hour snooze and it seemed to work.

Had a little bit of egg pasta and now am just tired/woozy.

Have been taking my temp every morning so I know my baseline and can check against that whenever.

Done my 2 litres of water and still going... apparently that is the key!

will keep you posted.

All my very best to you all xxx

Member

Re: November 2019 Chemo Starters

Hi Twinkle

im sure your boys won't worry when they are opening their presents on Christmas Day. You shouldn't fret you just need to concentrate on yourself and get through the treatment. 

Im due to have my second treatment on on the 17th dec so I don't think I will be going any where on Christmas Day. Have said to my hubby that's there will next year, my boys are grown up, but they still like Christmas. I don't know about you but I feel as though every one is getting on with their lives talking about Christmas and what they are going to be doing and I sometimes want to scream at them. I know that people aren't doing it on purpose and people will get on with their lives, but   at this present moment in time I just feel like I'm am in no mans land. 

we just have to think there will be other Christmases and we can celebrate bigger xx

 

Member

Re: November 2019 Chemo Starters

I have my start date now - next Friday 22nd. I have had my chemo info session, where they scared they daylights out of me with the infection risk talk & video!

PICC line (hopefully) going in next Thursday. The leaflet they gave me shows it on the left arm and ending up near the heart, but my mastectomy and lymph node clearance was on my left so will they put it in my right arm?

Next Tuesday I am having my hair cut short and sending it to the Little Princess Trust.

 

Hello and welcome to Matinav and twinklestar.

 

Thank you to all the forum members from other threads who have previously had chemo - it is really lovely to hear from you.

Member

Re: November 2019 Chemo Starters

Hi NMM

Hope all goes well with your treatment  I’m now on tamoxifen (Hormone therapy) and so far little side effects. I just wanted to reassure   Everyone that it’ll soon be over And the waiting is the worst part and I found cancer everywhere and It came to consume me at times. Have a cry shout get angry but know that little alien thingy will be gone. I was cancer free when I had surgery and the relief is very worth it. Only programme on tv was master chef which didn’t mention cancer at all but it’s flipping everywhere ladies just try to shut it out whilst having your treatment oh and sign up for look good feel better it’s brill lots of free makeup you go in it through Macmillan xx❀️

 

Member

Re: November 2019 Chemo Starters

Chris631 - I’m due the same Fec-T 6 cycles, 3 weeks apart. Oncologist said would be about a month after last cycle that radiotherapy would start (3 weeks worth). Been trying to work out when I’m cycle would be Xmas day :-( Feel for my family and my boys who are still totally into the magic of Xmas - I don’t want to spoil their time :-(

 

Helen - yes, it’s a double blind trial, so would never know. In the end I felt I couldn’t live with not feeling I’d done all I could (was given choice chemo or not as borderline). In a way the trial makes that choice for me - and mindset at moment  is chemo is happening. I also have to have monthly injections to suppress my ovaries as part of the trial - or have them taken out in the future :-0

nmm
Member

Re: November 2019 Chemo Starters

Hi Helen - finished my first round yesterday.  Side effects for these first three weekly treatments have been insomnia on the night after chemo - up from 3-5, some odd tingling in my arms now and then, wonky appetite and very mild nausea.  I’m fasting before and after chemo and getting weekly sessions with an osteopath, acupuncturist, and shiatsu practitioner which I think is helping a lot.  I’ve lost a bit of weight but I think that’s normal given the supported fasting and the weird appetite.  They don’t do the arm lines here where I live, I have a catheter implant thing below my collarbone on the left side of my chest.  Another scar Smiley Sad

 

 

Member

Re: November 2019 Chemo Starters

Hi Viv

i am due to start on the 26 so the waiting is the fear of the unknown, my anxiety is bad at times, but I think I will be in a better place once I have had on round, at least I will know a bit better how it effects me. I am going to keep a journal of everthing so will at least know what to expect for future rounds. 

Hope number 2 goes better for you and less side effects xx

Member

Re: November 2019 Chemo Starters

Hi All

 

As the set up of this forum means you can't reply to specific messages...then just a few replies in one email! I feel rude that I can't reply to everyone. My PICC was put in yesterday by a fantastic sister who was very experienced....I apparently have tiny veins (thankyou body) so it was a bit touch and go- but I am so glad that I now have a line for the whole of my treatment.

 

Twinklestar- that sounds like a difficult wait, as how are you meant to prepare for something that might not happen? I totally feel for you. Also if you have chemo, I presume you wont be told whether you are in the experimental or control group (that it will be a blind trial?). If you do get the go ahead, then at least you will start at the end of the month- and will have received a lot of tips from the wonderful people on here.

 

Viv- I am glad you have had at least one better week. Perhaps things will be better after this next one (fingers crossed)

Flou- I hope things went well for you today...sounds like you are in a good unit, so I am hoping your side effects are manageable

All the others who are waiting and feeling anxious- keep strong. There seems to be a raft of wonderful women who are lighting the way in front of us.

All the others who have started this month...what was the span of your side effects over the 3 weeks. ? Hope you have had some good days in the mix.

 

All the best

 

Helen XX

Member

Re: November 2019 Chemo Starters

Hi Twinkle

wlcome to the forum. We are all here to support each other although it our own journey we are here for each other. I am due to start my chemo on the 26th so a day before you, we can do this journey together. I have tried to prepare the best I can for side effects,a m having fec-t six cycles over 18 weeks then radiotherapy and hormone. 

Its not easy at times as I know especially with my anxiety, but there are lots of lovely people on the forums who have come out of the other side and I am just hanging on to that thought. 

Xx

nmm
Member

Re: November 2019 Chemo Starters

Thank you Deano for the encouragement! It means a lot to hear from someone on the other side of this.  I just finished my first cycle - getting it in weekly sessions for the foreseeable future.  

Member

Re: November 2019 Chemo Starters

Hi.

Been lurking since diagnosis this summer...

Quick intro: I’m 42, married with two boys (9 and 7) 36mm grade 2 - Therapeutic mammoplasty and axillary clearance took place 27 September (1/7 lymph nodes found cancerous). Radiotherapy and hormone therapy a definite - but awful last week of weighing up chemo benefit. In end I have entered the Optima trial (50/50 randomised selection to have genetic test on tumour to decide if chemo benefit, with default chemo)

Trial results on 25th - chemo booked today start 27th Nov (so I’ll have two days to get my head round very likely to definitely- which is a big big difference!). Haircut booked for the 26th - so it will be a normal trim or a severe pixie cut! 

The unknown is hard :-(

Member

Re: November 2019 Chemo Starters

Hello ladies,

Hope everyone is doing ok ❀.

Good luck with the chemo today Flou, hope it goes smoothly. Lisa 49, did you get a date yet?

I am on countdown for cycle 2 next week. Def a better week but everything is an effort, have to rest between any a activities. Happy alot of people are getting by with minimum side effects, guess I am not one of them but after watching a programme about having cancer in other countries makes me realise how lucky we are to have the treatment and options available to us!

How is everyone still waiting to start. The anxiety does lessen once you get into it...keep your spirits up lovely people...

Viv xx

 

Member

Re: November 2019 Chemo Starters

Hi All

just popping in from Feb chemo starters and wanted to reassure you all that your chemo will go very quick I had 6 rounds of fec every 3 weeks. Drink loads of water 2 litres aim for and try bottled spring water better than tap and also ask for suppositories as I had bad constipation and trust me these worked quickly. I was er positive her2 negative and had grade 3 tumour at 4 cm. I had one lymph node affected. Chemo shrunk my lump to 1 cm and I had this removed in July with 9 lymph nodes followed by 23 sessions of radiation in breast neck and armpit.
I lost all my hair after 3 weeks my eyelashes were the last to go in June on my last session. My hair grew back within 6 weeks and by end of July I had my hair coming back and what a relief ladies- it will grow back trust me and invest in a silk hat or pillow as this doesn’t pull on your hair
The worst thing for me was the hair Loss I wore a wig and I had terrible oral thrush and had a mouth wash for a week after chemo the first 3 sessions of fec I managed ok but docataxel gave me bad aches in the legs and I had a reduced dose as I couldn’t stand it - I had slight numbness in fingers and toes but this has now returned. My nails have got better use nail harder as it goes help

All I can say is you can all do this and you will get through this remain positive and instead of saying why me what helped me was I thought thank god they found it and can treat me - if they can treat you they can cure you and you are all worth it otherwise they wouldn’t bother as it costs thousands my treatment was over Β£50,000 on nhs 

Im happy to support any of you if you need it my group have now moved onto Facebook and we still chat. Good luck ladies and stay strong it’s just a process I’ve took photos of my hair each month to document it’s return ❀️❀️❀️

Shi Community Champion
Community Champion

Re: November 2019 Chemo Starters

Matinav sorry you find yourself on here, Patricia prijatel book surviving triple negative breast cancer was very helpful for me, not all tn’s would say so but it helped me, so you might want to give it a look, she was tn herself, other USA tnbc survivors Shannon Doherty, robin Roberts, Joan lunden, they have all posted online and I found that helpful too. Also your MD Anderson clinic in USA is worth keeping eye on with their research and treatments. Sorry I can’t answer about the ac, had fec-t for tnbc 2 years ago. Hope this helps in any way πŸ’•πŸ’•βœ¨βœ¨Shi xx

Member

Re: November 2019 Chemo Starters

I am triple negative and started Chemo Thursday. I am 54 and have no known gene relation although family is rife with breast cancer. Because of Triple Negative, the plan is neoadjuvant chemo then bilateral mastectomy, then we'll see if I need to do something else. Tumor is contained. So I hope this works. I think the anxiety from waiting sent my blood pressure through the roof but now I feel calm and just trying to stay healthy throughout the process. And stay away from Germs! 

The Chemo is 4 x AC every other week. Then Taxol for 12 weeks every week. I'm in the US so it might be different here. I was hit with Neulasta 27 hours after treatment and immediately felt sleepy. I was told to take loratadine to keep from feeling bone pain from the Neulasta. Saturday was the only sleepy day but Sunday I was up again. I'm feeling like I shouldn't be feeling this well. I'm wondering if it gets worse as time goes on? 

Minor Symptoms: Gas, bloating, Constipation (I'm taking 600 mg of Magnesium for this - seems to work - didn't tell doctor), Nausea (eat crackers and take ondansetron every 8 hours for three days then as needed), headache - (take ibuprofen). Felt a little dizzy on Saturday and feel that now and then, like I'm a bit wobbly. I attributed that to the Neulasta but who knows. I also had some hot flashes the first day but they went away. 

They said side effects would hit me 72 hours after treatment and I feel like it didn't. So I'm concerned. I know that sounds weird. Nothing too bad happened and I am concerned. 

Wondering if it will be worse next time? I was told not to do Cold Cap because AC is so strong no hair can last.

Today is Tuesday, 5 days later, and the worse thing going on today is something that feels like a sinus headache that hurts so much my glasses feel heavy on my face and I have to take them off periodically. 

Doctor wants me to exercise daily and get heart going for at least 20 minutes. Haven't done that yet but have been walking. He says the busier I am the better it will be. So far he's right. He doesn't want me resting! I'm keeping myself quarantined but don't like not being able to go to the store! Is anyone else taking AC? 

Member

Re: November 2019 Chemo Starters

Here’s my take on it a week in

 

i didn’t expect to be so tired on day 2 i needed 6 naps 

severe heartburn, from evening of day 1. headache  nausea and the tiredness were mainly days 2-5x

i had constipation so have Licorice prunes and prune juice. Which has helped lol. 
also got a prescription for an antacid (gaviscon type) and mouthwash from Drs. 
 Good luck xx 

 

Member

Re: November 2019 Chemo Starters

The waiting is the hardest and I wish I had gotten the things on your list because now I won't go to the store and have to wait for family on the weekend! 

Member

Re: November 2019 Chemo Starters

Goid luck hope it goes ok xx

Member

Re: November 2019 Chemo Starters

My nurse told me to take loratadine for bone pain. 

Member

Re: November 2019 Chemo Starters

Sorry to hear about your throat, I can imagine how upsetting the delay in starting is. I am still waiting for a date and like you feeling incredibly anxious.

Lisa x

Member

Re: November 2019 Chemo Starters

You're funny. My friends and family are checking up on me and I don't want to talk about it either. I'm tired of talking about me! So I get not telling people. Totally get it. 

Member

Re: November 2019 Chemo Starters

Good luck. I hope it’s kind to you. Keep posting then we can support you. 
πŸ€— Hugs

Member

Re: November 2019 Chemo Starters

Hi All

 

I too have been massively anxious- more so than for my surgery. For some of you, your treatment is starting with Chemo- which must be a hard way to start.

naueas

As it gets nearer, and I have accepted that it is inevitable, I am starting to feel a little more accepting. I will tell you all how the PICC line goes tomorrow, and then how Friday goes.

 

I have stocked up on CBD chocolates..so I am hoping that will help with anxiety and nausea

 

I hope those who are starting before me this week , I really hope the process is as smooth as it can be..

 

It is great to be going alongside this with you all XXX

Member

Re: November 2019 Chemo Starters

Hope your throat heals soon, we will conquer the mountain soon. 

Member

Re: November 2019 Chemo Starters

Hi 

I can completely identify with the waiting. I’ve been waiting 3 weeks then finally get a date for next Monday then get a throat infection and it’s cancelled. Had a mini breakdown myself today. GP put me on mild antidepressant as just not coping. We are climbing mountains, all of us. 
sending hugs πŸ€— x

Member

Re: November 2019 Chemo Starters

So happy for you. I had a break down today as the waiting for treatment was getting to me. Got a call to start on Thursday. 

Member

Re: November 2019 Chemo Starters

Hi Lisa,

 

no more treatment for me,  i had my single mastectomy and 3 nodes removed back in April.

i am having Zoledronic acid iv every 6 months for the next 2 years, next one is January next year and first mammogram again in March.

this is my second TNBC ,  hoping thats it now...πŸ‘πŸ’–πŸ’–

Member

Re: November 2019 Chemo Starters

I have just been to see my oncologist today as my anxiety was off the planet about a slightly suspicious node as she put it shown on my scan. Got some clarity and feel a little better after speaking to the cancer nurse. I mentioned that I have been taking cbd oil for my anxiety and asked if I could continue when I start my chemo and she said she didn't see a problem with that so really good news for me to help me manage my anxiety, she said better than taking diazampan which I had taken earlier in my diagnosis 

 

hope me this helps 

 

xx

Member

Re: November 2019 Chemo Starters

Hi Mini mad,

Thank you; it’s really good to hear from people who’ve finished chemo Smiley Happy

Do you have any more treatment to come?

Ah your holiday sounds lovely, enjoy!

Lisa x

Member

Re: November 2019 Chemo Starters

Hi HelenofBrum,

I don’t know much about CBD - do you know what benefits it can have? Are you thinking of trying it?

Lisa x

Member

Re: November 2019 Chemo Starters

Hi All,

Sorry I have been inactive for a while. I was ill last week sore throat and glands up so did not have my chemo last Monday.

After my visit to the chemo unit and running through all the side effects and how I react to drugs a lot less potent,(codeine, eterocoxib, iboprufen etc I could not get comfortable with going ahead with chemo for me.

So I made a decision and saw the oncology team, who could totally understand my decision and am now going to do radiotherapy and endocrine drugs instead.

This decision was right for me I feel so much more at peace.

So I just wanted to wish you all the very best as you go through your chemotherapy treatments as I will no longer be part of this thread.

 

 

Member

Re: November 2019 Chemo Starters

Hi VicMc,

 

i'm doing quite well thankyou πŸ‘

i now have a covering of soft fluffy hair,  eyebrows are back !  n eyelashes are growing !!
energy wise i am def not as weary as i was,  but still going upstairs slowly....  but coming down i'm getting quicker πŸšΆβ€β™€οΈπŸšΆβ€β™€οΈπŸƒβ€β™€οΈπŸƒβ€β™€οΈ
going to The Canaries for a week of r & r end of this month.  Had enough of hospitals this year ......

mini mad

Member

Re: November 2019 Chemo Starters

It was all doable.

days when i'd had enough,  roughly half way through,  but you dont really have a choice,  so you just continue.

Side effects for me really werent too bad.  You learn as you go along the best way to handle them.

i would say drink loads,  about 2+ litres a day.  This  can include tea, coffee, milk in your cereal, ice lollies, fruit ie. melon n pineapple.

Oh and i took my temperature every morning before i got up,  wrote it down,  that way you can see what is a normal temp for you.

i had Triple Negative BC.   12 weeks of weekly paclitaxel and every 3rd week carboplatin.

what type if BC  n treatment are you having ?
mini mad x

Member

Re: November 2019 Chemo Starters

Thank you, glad you have finished with yours good luck for any other treatment xx

 

Member

Re: November 2019 Chemo Starters

Hi everyone and lots of positive thoughts to you guys starting this week...❀.

After being horizontal for 2 days I managed to clean my son's bedroom today and go for a walk...just need to rest between everything. Can't believe how much it affected my legs and energy in my body. I guess we havevto remember every cell in our body is being zapped by chemicals so no wonder it responds in kind..I am on Day 12 and pretty much feel like I have had flu and am just starting to move about..but again everyone will feel differently..i think I def had a dip Day 7.

Glad you got to go to the Chemo units before to see the surroundings, def helps to prepare. 

How are you doing mini mad?

Xx