Topic: Anyone had chemo? How was it? (Read 7079 times)

roycv · « **Reply #25 on:** November 14, 2020, 08:25:24 am »

Hi Plastic glad to hear your experiences there is tremendous support both in the forum and the NHS.

RST kind of you to share your current situation, you only get one mum, they have to be looked after.

Picking up if I may on the mention of ginger. I would not be surprised to hear anything about its properties, I can recommend the crystalized version to any gentleman not able to get through the night without a nocturnal toilet trip. I was holding at bay a prostate problem with the stuff. There s a side effect as it stains the teeth yellow. Since sorted out with my dentist.

I was with friends many years ago and we had a frozen meal from M&S and I chose Lamb Jalfrezzi and slept through the night, first time for at least a year, I tried the chicken version same thing then checked the ingredients and found ginger and this was the reason. When I eventually had a prostate Op (benign as it happens) I was still sleeping all night which I do not think the nurses believed.

No intention of hi-jacking the thread but just wanted to emphasize that there seem to be varying claims about ginger and they should not be dismissed as an old wives tale. Not only that but Ginger covered in dark chocolate is a near heavenly experience for me! By the way I tried ginger pills and they did not work.

My best wishes to all those with medical conditions on top of our current situation.
Regards
Roy

rem2007 · « **Reply #26 on:** November 14, 2020, 01:35:04 pm »

Yes, 5 years ago now, persented in my lymph nodes in my neck, surgery, radiation x6 weeks x5 days a week, and chemo x1/week, everyone's experience is totally different, dependent on where the cancer, is. I finished treatment 11.12.15, and basically slept through Christmas that year, woke up on the 27th and asked the wife where the adult girls were and she said she kicked them out as they were arguing, never heard a thing. When I did wake up, I had a fever and an infected stoma, as I was tube fed for x2 months, couldn't swallow, I lost over 11 kg, and ended up in hospital for the anemia and an infection. Went back to work March 1st, those several weeks after treatment were horrid, wouldn't wish it on anyone. I always thought it would be prostate for me as my dad and 2 older brothers had, brothers are fine and much older than me and dad passed in a car accident. Can't praise the NHS at Musgrove in Taunton, they were great and still are, bless them, I figure each day I get now is just a peach, until you've been through it, its all just someone else's story, I'm 5 years good now, but it does change your life, knowing that it lurks behind you, hope this helps, if you ever need a chat, drop me a line, 62 and still going at it, abit slower but hey whats the rush.

Robert

Plastic - RIP · « **Reply #27 on:** November 14, 2020, 01:54:07 pm »

Hi Robert - Thanks for your response. Congratulations on beating it - I hope you're feeling well.

It's all the unknowns that are the stress - I know where I am now but I've no idea what condition / health / abilities I will have when I'm done - and for how long before it takes me down permanently. The treatment they are offering won't stop the cancer, it'll just slow it down so there's no guarantee I'll be any 'better' after - or will I be where I am now, minus a load of weight and strength - I will have been alive for longer than my 3-6 months prognosis - (2 months ago) but not able to *live*.

Plastic - RIP · « **Reply #28 on:** November 14, 2020, 01:59:30 pm »

Quote from: roycv on November 14, 2020, 08:25:24 am

Picking up if I may on the mention of ginger. I would not be surprised to hear anything about it's properties, I can recommend the crystalized version to any gentleman not able to get through the night without a nocturnal toilet trip. I was holding at bay a prostate problem with the stuff. There s a side effect as it stains the teeth yellow. Since sorted out with my dentist.
Roy

Hi Roy - there's a load of anecdotal information about these things - it's one of the things I want to talk about with the oncology nurses as I'd guess they've literally heard and seen it all and so are probably able to give a casual insight on alternatives.

Plastic - RIP · « **Reply #29 on:** November 17, 2020, 11:37:21 am »

Starting to panic now.

The paperwork pack turned up late on Thursday and mentioned going for a blood test using the form included - but no form.Nurse rang on Friday and was surprised at no form - but she would e-mail one to me so I could get it done at our drs up the road. Naturally, nothing arrived.

We spoke to a different nurse on Monday and she said I couldn't use my gp because they are on a different computer system so we had to go to Mt Vernon this morning instead - and the form would be waiting at the blood clinic.

We were there for 9am - no form.

We were sent around to the cancer suite (walking 300yds feels like 20 miles right now) and they had the form there so did the test there.

This is all getting too random and out of control for my ability to cope. I'm getting really worried about Friday's chemo when I'll be left for a weekend immediately after with no easy safety net if I have problems

.

BrianB6 · « **Reply #30 on:** November 17, 2020, 09:54:32 pm »

Sounds like you need to give them a piece of you mind.

I must admit that all the cancer staff I have met have been fantastic and very attentive so I pray that things improve.

Plastic - RIP · « **Reply #31 on:** November 22, 2020, 07:31:09 am »

My 1st chemo was horrendous. I was there half hour early (1:45) because they said they'd start directly I got there but instead I got shoved into a side room and forgotten about - the infusion started at 3:15 and I wasn't offered and food or drink the whole time - nobody checked on my until just before the end at 5pm. While getting ready to go home I was hit by unbelievable pain - thought I was going to die - held onto the bed so hard that I've pulled muscles in my arm - pressed the alarm- no-one came.Eventually a nurse wandered in and said she would get a doctor - no-one came. Eventually decided to leave but none of the next appointment paper work was done

Total disaster.

Tried taking the pills at home but keep throwing up. unable to eat / keep food down. I'm looking like a Belsen victim - my body is deteriorating really fast. Need to speak to the oncologists but I think Christmas might be a distant dream for me.

rnli12 · « **Reply #32 on:** November 22, 2020, 09:35:23 am »

Not many words I can use that would express my thoughts sufficiently, my thoughts to you and you family.

Plastic - RIP · « **Reply #33 on:** November 22, 2020, 10:52:17 am »

Thanks Rich

This is all so scary. The infusion causes nerve problems so it's like holding a Hornby track - constant 12v shocks in my hands and extremities. I feel really sick and another of the pills had me on the floor with stabbing pain, sweating buckets and shaking like a leaf again. I don't know how much longer I can live like this.

Tug Fanatic · « **Reply #34 on:** November 22, 2020, 12:04:47 pm »

There is nothing that we can say which is going to help. It sounds like you have been treated really badly by those who should be caring for you. All you can do is to make a fuss and try to get better treatment. You shouldn't be left in this situation.
My thought are with you all.

Plastic - RIP · « **Reply #35 on:** November 22, 2020, 12:47:10 pm »

Thanks for your thoughts

My wife will be tearing the hospital a new one in the morning.

barriew · « **Reply #36 on:** November 22, 2020, 01:14:56 pm »

Have you contacted the Macmillan Nurses? They can offer you support in dealing with your pain and with the hospital. Your experience is so contrary to my wife's and my own during cancer treatment at our local hospital it is unbelievable.

Barrie

RST · « **Reply #37 on:** November 27, 2020, 11:32:33 pm »

Hi,

Sorry to hear your troubles so far -that doesn't sound right though we have had a lot of troubles ourselves: mainly with the district nurses though who have to perform some tasks twice a week at the house (and have been screwing it up until recently). I aggree with Barrie, phone MacMillan, and when we've had confusion from NHS board we've phoned the Oncology unit direct who have sorted things out for us here and then.

Can only send my best wishes through your treatment.

Rich

Illigitemi non carborrundum

Plastic - RIP · « **Reply #38 on:** November 28, 2020, 06:53:45 am »

Hi Guys - an update.

We're a week into this now and so I needed to not take the pills for a couple of days to let things stabilise. The painful tingling and coordination problems from the infusion have reduced to a manageable level - I'm unbelievably sensitive to low temperatures - just what you need going into winter.

I've gone back onto the pills and we're learning to 'fly' those. The main problem is the chemo pills - I have to take 4 in the morning and 4 in the evening. Morning is ok - I can create a bed of weetabix in my stomach and lose each one with a few more spoonfuls to land on top of them. Within an hour, I feel stable and confident to do things without immediately throwing up.

Lunch is fine too - the only problem is loading more food and drink downwards putting pressure into my swollen abdomen - the discomfort grows all day, along with the back pain.

Evenings are hard - It's a race to get the pills and food down and try to stabilise and not throw up afterwards while feeling generally tired, uncomfortable, bloated, sore, gassy and borderline wanting to hurl. The back pain reaches a maximum - I just can't get comfortable anywhere. Laying down with the tv on for and hour or so helps until gravity makes everything moves around inside. This takes until about 8pm and then I feel fine again for a short while. I still don't have confidence in my body so I'm carrying around my little sick bucket - just in case.

Other than that, I seem ok - appetite is good - I'm looking forward to food - muscle mass is a worry.

It seems my day is now split into 2 distinct sections - getting going in the day and doing things - and all evenings trying to stabilise my body and prepare for sleep. Rinse & repeat.

BrianB6 · « **Reply #39 on:** November 28, 2020, 09:14:41 am »

So sorry that you have had such bad experiencs. Complain again and again.

When I have my infusion there is always a nurse on duty, even if she has to look after 3 -4 of us. We are never left alone.
Sounds as if the hospital needs a visit from the local T.V. station

Plastic - RIP · « **Reply #40 on:** November 28, 2020, 10:17:16 am »

Quote from: BrianB6 on November 28, 2020, 09:14:41 am

So sorry that you have had such bad experiencs. Complain again and again.
When I have my infusion there is always a nurse on duty, even if she has to look after 3 -4 of us. We are never left alone.
Sounds as if the hospital needs a visit from the local T.V. station

My wife has sprinkled her magic around and for the following appointment times, I will be personally seen to by the senior nurse directly I arrive at the main ward where I'll be with others so I'll never be alone. (cover ups seem to make guilty people a bit more motivated).

Plastic - RIP · « **Reply #41 on:** December 12, 2020, 08:34:40 am »

I had chemo #2 yesterday - a much better experience. I started to develop a reaction to the infusion so it was stopped at about 90% done - it was considered to be sufficient.

I was in hospital a week ago - the bloating in my abdomen had become even more acute so they drained me out - 12 litres!!!!! almost 3 gallons!

I felt sooooooo much better after that - it had stopped me eating and drinking because of the internal pressures so I've lost 1.5 stone / 10 kg of vital muscles - mainly back, shoulders & chest but arms & legs seem a bit thin too. I look a bit scary like a prison-camp escapee.

I took the challenge from last weekend to yesterday's infusion to see how many thousand calories I could force down to get some fat back on my bare bones.

I've just had the first of the parallel pill-based chemo - I seem to be tolerating it better now I'm able to eat properly. I've got oral morphine solution to head off the back-pain the treatment causes. Early days still so it's all a big learning curve - but I'm feeling a bit more positive.

Mark T · « **Reply #42 on:** December 12, 2020, 02:14:55 pm »

Hi Plastic - I'm really glad that your second experience was better than your first. I must be honest it was painful reading the way you described your first visit. Good luck with your journey through all of your treatment.

Give "just eat" a call - they deliver McDonalds and that will put some weight on you

Just look at the kids nowadays!! For some reason I fancy a chocolate milkshake now

Plastic - RIP · « **Reply #43 on:** December 12, 2020, 02:26:50 pm »

Quote from: Mark T on December 12, 2020, 02:14:55 pm

Hi Plastic - I'm really glad that your second experience was better than your first. I must be honest it was painful reading the way you described your first visit. Good luck with your journey through all of your treatment.

Give "just eat" a call - they deliver McDonalds and that will put some weight on you Just look at the kids nowadays!! For some reason I fancy a chocolate milkshake now

Second time was much better - my wife sorted them out and spoke with the organ grinder so everything was good to go.

McD Quarter with Cheese = 600 calories. Good - but no cigar. Waitrose luxury custard = 2000 calories!!

Cadbury's proper hot chocolate with full fat milk = 450 calories! I've been loading all week! I can 'feel' the vanilla essence coming out of my pores - a bit like after a heavy garlic feast you can smell it for days on your skin.

Mark T · « **Reply #44 on:** December 12, 2020, 02:35:22 pm »

Mate I'd be eating Ben and Jerry ice cream until it came out of my ears - oh and Jaffa cakes I'd be sitting watching a film doing 3 boxes no problem

Plastic - RIP · « **Reply #45 on:** December 12, 2020, 02:43:08 pm »

Quote from: Mark T on December 12, 2020, 02:35:22 pm

Mate I'd be eating Ben and Jerry ice cream until it came out of my ears - oh and Jaffa cakes I'd be sitting watching a film doing 3 boxes no problem

I cant!

Because of the chemo infusion, I can't have anything less than room temperature because it will trigger my throat to close up - which would not be good.

If my extremities get even the slightest chill, I get huge electric shocks - really painful! If I go out anywhere, I haver to dress up like Scott of the Antarctic - and a face visor to create a little micro-climate in front of my face so I don't inhale cold air. It's very weird.

Another strange one is having to tease my saliva glands with a little touch on my tongue first or a new flavour triggers a painful 'rush' - it REALLY hurts! Same happens with tears - so painful.

BrianB6 · « **Reply #46 on:** December 13, 2020, 01:43:51 am »

I have had to stop one of my treatments as my blood cell counts have gone too low. Feeling better than I have done for the past 3 months.

Just as well there is no Covid on the loose in Melbourne but I still have to keep clear of people.

Plastic - RIP · « **Reply #47 on:** December 13, 2020, 07:01:47 am »

Quote from: BrianB6 on December 13, 2020, 01:43:51 am

I have had to stop one of my treatments as my blood cell counts have gone too low. Feeling better than I have done for the past 3 months.
Just as well there is no Covid on the loose in Melbourne but I still have to keep clear of people.

Giad you're feeling ok - the chemo kicks the crap out you - it's often a race between who dies first - the patient or the cancer.

Will they restart when it all stabilises? I had the 2nd infusion on Friday and I'm taking the parallel pill chemo - and they're not giving me any side affects apart from back pain about 1/2 hour after taking which the morphine liquid squirts are looking after nicely - I actually feel completely ok apart from the extremity tingling - but it's all very mild. I hope this continues like this for the next couple of weeks of pills - then I get a week off of taking anything. Then chemo #3 on Jan 1st.

BrianB6 · « **Reply #48 on:** December 13, 2020, 07:13:36 am »

Probably. Blood tests on Tuesday "All Bloods" then I will get a call on Thursday letting me know what 'they' have decided. Might be a lower dose.

Plastic - RIP · « **Reply #49 on:** December 13, 2020, 08:01:05 am »

Quote from: BrianB6 on December 13, 2020, 07:13:36 am

Probably. Blood tests on Tuesday "All Bloods" then I will get a call on Thursday letting me know what 'they' have decided. Might be a lower dose.

My chemo#2 is at a lower dose to chemo#1 because of the loss in my body mass - apparently, the Oxaliplatin infusion is done on surface area - I went from 2.08 to 2.0 sqm but my weight went from 92 to 80 kg so the Capecitabine pills went from 2000mg twice a day down to 1500 twice. They've not mentioned anything bad with my blood yet. The whole thing is so personal to the patient that it's all about fine-tuning to see what works or can be tolerated - the level of how ill you feel compared with wanting to continue the treatment.

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Author Topic: Anyone had chemo? How was it? (Read 7079 times)

RST