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Author Topic: Anyone had chemo? How was it?  (Read 2400 times)

plastic

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Anyone had chemo? How was it?
« on: November 11, 2020, 12:14:30 pm »

Hi All

I'm hoping that our combined life experience on this forum can give me some reassurance.


I'm starting my chemo on the 20th and I'm genuinely terrified.    <:(       Most times, going to hospital means they make you feel better - whereas I'm understanding this will make me feel awful.       Possibly much worse than I feel now.       It's once every 3 weeks but as it's personal to everybody, there's no really accurate data for what it's going to be like for *me*.          It's Oxaliplatin and Capecitabine.     


Has anyone know anyone who's gone through this?       How rough was the journey?       
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raflaunches

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Re: Anyone had chemo? How was it?
« Reply #1 on: November 11, 2020, 01:08:46 pm »

I can only go by my dadís experience from 20+ years ago and he had a different type of chemotherapy for his bladder cancer treatment- he had live TB virus injected directly into his bladder and then washed out- he looked dreadful from it and he felt awful for the evening afterwards. He had it once a week for 12 weeks and in his case it didnít work- it came back so they zapped with radiotherapy which he said was much more pleasant experience as it made you feel fantastic but shortens your life expectancy.
As you say experiences vary depending on where and how they administer the chemotherapy but keep your spirits up and your family close for support. My Dad was lucky that they found his cancer when they did because most bladder cancer cases are in men aged 70+, my Dad was in his late forties when he started to suffer from the effects. We still donít know what caused it either as it mainly affects people in the car paint industry.
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plastic

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Re: Anyone had chemo? How was it?
« Reply #2 on: November 11, 2020, 01:19:15 pm »

Thanks for that - mine will be pills twice a day and the 3-weekly infusion.      I'd guess the worst will be after the jab - either immediately or within a couple of days as it goes to work.        I've retained a load of fluid in the stomach area so it's really hard to force food down - I have the appetite but can only manage a mouthful and it just won't go down.     It's all too many data channels to monitor - weight, pain levels, sleep, appetite, calorie input, fluid input, muscle tone, energy levels etc. to try to plot a general health measurement.    I've got a maternity sling to help support the weight of my 'fluid-baby'    {-)

I actually 'feel' ok right now so I'm just going to carry on pottering about and seeing friends.      I'll take a Hi-Viz and a hammer because I can, as a tradesman, go where I like.   :-))
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john44

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Re: Anyone had chemo? How was it?
« Reply #3 on: November 11, 2020, 02:27:32 pm »

Hi,my chemo was cisplatin and etoposide on a 21 day cycle. Etoposide orally twice a day day 2&3 only
The infusion on the 3 weekly cycle.
You will probably have antibiotics also.
I luckily had no bad side effects apart from feeling tired in the afternoons. I did loose all my hair and beard though.
It has since grown back.
You must drink at least 3 ltr of fluids a day for a couple of days to help flush the chemo from your body
The nurses were great and explained everything about the treatments  to me.
That was 6 years ago.
Due to the pandemic I have not been able to go for my final c o t scan that will hopefully be clear.
I had stage 2 lung cancer.


John
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plastic

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Re: Anyone had chemo? How was it?
« Reply #4 on: November 11, 2020, 02:57:20 pm »

Hi John - thanks for that - good luck for the all clear!!!

Mine's very terminal but this treatment could buy me some time.

I've got all the paperwork through and the nurse will be speaking to me a couple of times before next Friday and the oncologist will speak with me too.

I'm just having a brain overload at all the information - I want to know - but I also *don't* want to know - it's making me feel sick with the worry.      I'd guess it's the same anxiety that everyone goes through during the run up, but it only becomes *real* when you're the one in the hot-seat.
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Dave

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Re: Anyone had chemo? How was it?
« Reply #5 on: November 11, 2020, 04:03:29 pm »

Mine's very terminal but this treatment could buy me some time.

That's very sad news, I hope you get a good lot of time from the treatment plastic. Take care
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BrianB6

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Re: Anyone had chemo? How was it?
« Reply #6 on: November 11, 2020, 10:22:10 pm »

Sorry to hear you need chemo.
I have had Prostate cancer since 2000 and various treatments for it.
The first thing to remember is that what suits one person does not always suit another and my experience is that if one treatment does not help or causes too many side effects then ask for alternatives.

I had one lot in 2016 and it was awful and useless.  The next treatment worked really well for 3 years and then lost its effectiveness.   I am currently on what will probably be my last treatment, a trial of immunotherepy and a breast cancer chemo.
DO NOT LOOSE HEART.  Your treatment may be the answer and there are new treatments coming which may be even better
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BrianB6

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Re: Anyone had chemo? How was it?
« Reply #7 on: November 11, 2020, 11:39:59 pm »

p.s.
Don't be frightened by the lists of side effects that the hospital gives you or you read on various web sites.   The hospital is obliged, at least over here, to tell you all the things that 'might' happen. 

Diarrhea and constipation can be controlled to a reasonable level with simple drugs, so can nausea and vomiting with common prescription drugs.   They are unpleasant but I can live with mine.   I also have a supply of "men's nappies" just in case.   :embarrassed:
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plastic

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Re: Anyone had chemo? How was it?
« Reply #8 on: November 12, 2020, 01:30:25 am »

That's very sad news, I hope you get a good lot of time from the treatment plastic. Take care
Thanks - they say if all goes well, they may buy me 18 months - maybe 2 years
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plastic

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Re: Anyone had chemo? How was it?
« Reply #9 on: November 12, 2020, 01:33:38 am »

Sorry to hear you need chemo.
I have had Prostate cancer since 2000 and various treatments for it.
The first thing to remember is that what suits one person does not always suit another and my experience is that if one treatment does not help or causes too many side effects then ask for alternatives.

I had one lot in 2016 and it was awful and useless.  The next treatment worked really well for 3 years and then lost its effectiveness.   I am currently on what will probably be my last treatment, a trial of immunotherepy and a breast cancer chemo.
DO NOT LOOSE HEART.  Your treatment may be the answer and there are new treatments coming which may be even better
That's what I'm worried about - my worst worry is my first treatment is on a Friday so I'm concerned about weekend support if things go wrong.       I'm also worried that if the side effects are too bad, when does being alive *not* equal living?
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plastic

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Re: Anyone had chemo? How was it?
« Reply #10 on: November 12, 2020, 01:39:10 am »

p.s.
Don't be frightened by the lists of side effects that the hospital gives you or you read on various web sites.   The hospital is obliged, at least over here, to tell you all the things that 'might' happen. 

Diarrhea and constipation can be controlled to a reasonable level with simple drugs, so can nausea and vomiting with common prescription drugs.   They are unpleasant but I can live with mine.   I also have a supply of "men's nappies" just in case.   :embarrassed:
Unfortunately, I seem to be one of those people who has all the rarest and worst side effects to lots of meds.    I'm also concerned that if I can't eat or keep food down then I'm on a very slippery slope.      I'm sleeping downstairs now and I have a bathroom within 10 feet.      I'm 90kg now but that could drop away leaving me with a more difficult path to any kind of capability recovery / quality of life.    I'm already as weak as a kitten.     And as I'm typing this at 01:47, sleep is clearly a problem too.    %)
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BrianB6

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Re: Anyone had chemo? How was it?
« Reply #11 on: November 12, 2020, 02:15:33 am »

I know that we are no supposed to mention religion on this site but I am praying for you, for God to ease your suffering and help you through the difficult times that you and your family are going through.
I presume you are having chemo in hospital.   Mine has a 24 hour help line that I can ring.   Even if the oncologist is not on duty the specialist nurses know almost as much.

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plastic

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Re: Anyone had chemo? How was it?
« Reply #12 on: November 12, 2020, 06:17:41 am »

Thankyou for your prayers - at times like this I'll take any help from anyone.      :-))

I'm having the first few appointments in the hospital but I have the option of having it at home when it's underway.     I'm not sure which way to go yet - I understand that we're all done in one large room together (distanced) so there's people to chat to in a similar position.    That could either be simulating and uplifting or terribly sad to get to know people who may not be at the next session.   <:(   


Having it at home could be much more convenient - I get to sit in a comfy chair with the tv and internet while the infusion takes its time.    It also means I don't have to have a covid test before each session and my wife gets the ability to pop into work (she's in the care sector so every time she comes to an appointment with me, it resets the 2-week exclusion for her.)
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BrianB6

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Re: Anyone had chemo? How was it?
« Reply #13 on: November 12, 2020, 07:01:09 am »

Have it at home if possible. One is at quite a distance in hospital to avoid cross infection and to allow space for the equipment
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Dave

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Re: Anyone had chemo? How was it?
« Reply #14 on: November 12, 2020, 07:51:42 am »

Having it at home could be much more convenient - I get to sit in a comfy chair with the tv and internet while the infusion takes its time.    It also means I don't have to have a covid test before each session and my wife gets the ability to pop into work (she's in the care sector so every time she comes to an appointment with me, it resets the 2-week exclusion for her.)

I think the 'at home' option is the best. If you're in room full of others and you want to take a nap for example that wont happen. At home you have everything where you want it and, as you said, you're not affecting your wife's routine either.
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Thanks and regards

Dave

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plastic

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Re: Anyone had chemo? How was it?
« Reply #15 on: November 12, 2020, 08:09:16 am »

The at home/hospital is, for me, driven by fear of the unknown.     The "what happens if things go wrong?" scenario - one is in a place with doctors & nurses and all sorts of specialist equipment - the other is my living room.      The problem is I have so many unresolvable unknowns and scenarios rattling around inside my head that I'm getting very overloaded/overwhelmed.     Is my judgement being impaired and will I make emotional decisions over sensible ones.   :((

There's also the little devil on my shoulder asking me why I'm bothering - why extend the misery and stress - just give in and let go - get it over and done with.
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Tug Fanatic

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Re: Anyone had chemo? How was it?
« Reply #16 on: November 12, 2020, 09:04:02 am »

I find it hard to imagine what you are feeling but I went through something similar with my father.

It seems to me that if you have had the initial experience of the treatment in hospital, with all the back up, and it went well then I would be prepared, probably relieved and indeed pleased, to continue the treatment at home.

The little demon on your back surely needs more experience of the treatment before you can seriously entertain such thoughts. Whilst I am not one of those who advocate extending life beyond anything else I do advocate extending life that is still worth living. The chemo might well be a lot less awful than your mind can imagine. I hope, and expect, that it is.
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plastic

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Re: Anyone had chemo? How was it?
« Reply #17 on: November 12, 2020, 09:05:53 am »

I agree

The little demon is only there because I'm so stressed and fearful.
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DBS88

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Re: Anyone had chemo? How was it?
« Reply #18 on: November 12, 2020, 11:12:07 am »

Stay strong, my experience of the Chemo ward is to sit with someone whilst they have their regular treatment, what I have seen is a camaraderie their on the ward, I see people sharing the hard times, but most of all I see hope and I see joy as they make the most of the time; they tell me life is not a rehearsal so go out and live it, I take inspiration from the proud, calm way they face the challenges life itself is throwing at them. So much respect for the honest and open way you are conducting yourself and for sharing with us your journey. I wish you well, you are brave and an inspiration.
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plastic

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Re: Anyone had chemo? How was it?
« Reply #19 on: November 12, 2020, 11:35:37 am »

Thankyou.        I'll see what the hospital experience is like - I'm just concerned that everyone will be so 'safely distanced' from each other that communication will be impossible.      I like to chat with people but if it's not going to work due to covid, I'd rather be at home.
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DBS88

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Re: Anyone had chemo? How was it?
« Reply #20 on: November 12, 2020, 11:44:35 am »

Whilst things are different under Covid, what is the same is that you will be with other people treading the same path, think of it as a club, you will be able to say and share things with other members of that club that no one else will be able to understand - unless that is they have trod the same path.
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plastic

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Re: Anyone had chemo? How was it?
« Reply #21 on: November 12, 2020, 11:49:06 am »

Whilst things are different under Covid, what is the same is that you will be with other people treading the same path, think of it as a club, you will be able to say and share things with other members of that club that no one else will be able to understand - unless that is they have trod the same path.
That's really what I was hoping for - but I'll see the reality next week.      It's weird to be in this position - The only 'known' data is that I'm going to die - everything else is all possibly's and maybe's.      It's also annoying that it's this wet & cold & miserable time of the year and that Boris is still farting about with us all.    I have better things to do.
This is us last week meeting a wild wolf pack and taking one for a walk in the countryside.
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BrianB6

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Re: Anyone had chemo? How was it?
« Reply #22 on: November 12, 2020, 09:46:12 pm »

I keep laughing at the Jokes and humour posts.   %%
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RST

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Re: Anyone had chemo? How was it?
« Reply #23 on: November 13, 2020, 10:30:45 pm »

Hi and sorry for this long post but not sure if this helps but I can offer the following as I am pretty much caring for my Mum going through chemo at the momentÖ 

Towards the tail-end of lock-down she ended up at the doctors and long story short it ended up colon cancer plus after a somewhat never ending set of 'oscopy's from both directions, MRIís and various types of CAT scans it spread to 2 tumours on the liver also.  Finally confirmed stage 4, but believe so far there is a curative path.  We were told to expect chemo (3months, bi-monthly) then another CAT scan before decision on (likely) another 3 months chemo, then probably radiotherapy and pretty much for sure colon surgery with a hysterectomy at same time, then now 50/50 possibly also a second set of surgeries to remove as much of the liver as needed.
 
She is on 3 IV treatments through a PIC line, plus a there is a 4th chemical thrown in for good measure (I don't have my notes handy for the chemicls).  She is also on a course of steroids and as much anti-sickness pills as need (might be some other tablets, canít remember).  She has nurses round every Thursdays to service the PICC line, take blood every second week just before chemo every second Friday, she spends most of the day on pumps in the hospital then comes home with a little bladder of the final chemical in a bum bag which is disconnected at home by the nurse on the Sunday.

 
Some good news so far though after 2 treatments and 3rd one next week) which Iíd say is hope for anyone going through this:
 
 
  • After 3-4 months going round in circles of tests and chacks, our local hospital in Larbert have been really good.  There is a Macmillan nurse sheís talked with which has helped allot and sheís been there at consultations also.  I personally am NOT happy anywhere near a doctor (nevermind a dentist!) but going in and out with her I am quite surprised how comforting everyone has been
  • We were told that my Mumís constant desperate trips to the toilet would NOT END with the chemo -itís not there to sort that.  This has NOT been the case so far, and rather than sprinting every 15mins 24/7 before an accident, sheís now going to the loo more normally a few times a day, and the bleeding stopped also.  This we were told wouldn't happen until much, much later in the process
  • I didnít realise she was in quite so much pain the past few months but she is stubborn and hid it through lock-down!  We were told the pain would NOT SUBSIDE with the chemo -again, it's not the course of treatment to stop it.  This has NOT been the case and she says sheís not sitting on the red hot poker anymore!  The hospital have no answer for this, same with the problems going to the loo
  • Hair loss:  Our treatment doesn't "shed" hair but we were told to expect "thinning".  Im helping her bathe and I had to confirm to her after first treatment was instant shedding in the bath -lots of hair gone but not in patches, just thinning
  • Food / diet:  I was quite surprised the consultants told us nothing specific helps with things.  NO vitamins to bulk up on.  However, we have family friends who have all been through this (allsorts of Cancer) and everyone is coming round with fresh GINGER based biscuits and cakes -anything with GINGER really!
 
As for side effects we googled everything and looked at McMillan like the hospital said to do.  Sounded terrible and to be prepped for the worst.  Actually, she has coped very well so far which has surprised the hospital.  She has had: quite bad gas, sensitivity in fingertips -particularly tingling anything cold, sometimes for a day or so she doesnít have enough feeling to ďuse" the fingers for doing normal things with hands (we were explicitly told to expect this).  She has been VERY TIRED and sitting last time outside the ward in the corridor while she was inside waiting for an appointment (I can only wait outside), I heard another patient speaking to her and said "donít fight the fatigue, go to bed for a snooze -whatever".  She has some dry skin, minor sore lips (all expected).  Only one day of proper nausea so far.  I am pumping fruit and veg into her in my cooking, she has to keep eating ALL the time (little and often) -snacks, sweets, drinks, anything desirable and her taste and sense of smell have changed so I'll get her whatever she feels like.

 
Öso I think itís all different for different people and everyone is on different cocktails of drugs and treatments and whilst my Mum is not quite as wide as she is tall at 4í8Ē sheís had such good diet and healthy living (forever) itís all good for her and they say her bulk actually will help.  I thik Itís not been traumatic so far so something positive as we were expecting an AWFUL lot worse going in to it!
 
My father died in 2013 at 69 from "secondary prostatic cancer, pulmonary fibrosis and pneumonia".  At 55 he had a 5x (yes a record 5x, none of your double or triple) heart bypass before the prostate cancer and the second time the cancer came back he was on a palliative cocktail of drugs rather than curative -he lasted much much more years on this, not months!!!!  So donít give up just yet!!!!!


I'm not sure if this helps but we always find people are all out there going through or helping with similar things.  I realise this was a bit of an essay but it helps me to talk about it also.


My Mum lives in Falkirk, half way between Glasgow and Edinburgh.  I live in Inverness 4h drive away but I actually work near Versailles 20k south of Paris and have an aprartment there I can't get back to at the moment.  So I'm stuck in the UK last 8 months due to co-vid and driving up and down the A9 every week to Mums -it's honestly a privelege to help my Mum out these days though and you will find family and friends rally round you when you need it.


Hope this might help,


Richard

 
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plastic

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Re: Anyone had chemo? How was it?
« Reply #24 on: November 14, 2020, 03:52:56 am »

Hi Richard - Thanks for that - I hope for the best for your mum and you all.

I have cancer of the peritoneal sack - the big bag that holds all my abdominal organs.    They think it's a secondary from a teeny-tiny bowel cancer that is too small to find but has been busy spreading elsewhere.       I have a mass on the left side - more or less where my left elbow touches my side and a whole load of secondaries along the outside of the large intestine - on the PET scan is looks like someone draped Christmas tree lights along it.     

It's terminal and inoperable.     

It's causing a huge fluid build-up within the sack so the internal pressure is making me bloat and I'm finding it impossible to force food down - one mouthful and I feel stuffed.    I'm concerned this will be my downfall - no food means I won't last too long.   I'm concentrating on super-high calorie food like custard and chocolate to get as many calories down as possible.     There's also the problem of the cancer causing multiple blood clots in both lungs - it's what initially put me into hospital - so I'm having the daily Clexane stomach injections which makes everything sore as well - and causes a really dry mouth making eating even more difficult.
The bloating is becoming really painful - I've had to get one of those pregnancy slings to envelope/support it - but it's stopping me getting any comfort so I just cannot sleep.    There is no comfortable position.

We spoke to the chemo nurse yesterday - it all kicks off next Friday afternoon.   She's gone through what to expect - the fatigue, nausea etc but also that I can't have anything cold or let my fingers get chilled at all.        It's going to be a 2-hour infusion once every 3 weeks in parallel with pills twice a day for 2 weeks and one week off - rinse & repeat for maybe 6 months - if I last that long.

They say that if everything goes well, this might give me 18 months to 2 years.    Unfortunately, I can feel how fast this cancer is growing so I'm rather more pessimistic.    The engineer within me is continually plotting the graph of symptoms / body condition and I'm beginning think Christmas might be a stretch for me.
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