Jock67B's Cancer Ward (Cancer Support and Discussion Thread)

[PeterBB]

Hope the side effects are not too bad … in the meantime you have an opportunity to become ambidextrous.

 

Edit = spelling

Edited June 26, 2018 by PeterBB

[Andrew P]

I had my 1st dose of oxalyplatin today.

The only real problem I've had so far

is pins and needles in my arm.

When it started, the nurse reduced

the pump rate which helped a bit but

of course that meant it took an hour

longer to run it all through.

The numbness is gradually going but

I must remember next time to have it

in my right arm; I'm left handed and

my fingers aren't quite going where

I want them too. I'm starting the

tablets this evening, apparently the

side effects (if any) may take a

couple of days to kick in.

It's good to see your actually well enough to update us, so thanks for that, no doubt you will need to rest, and I hope the side effects and the next session go to plan Brian.

 

All the very best.

[Simon G]

rab, I hope that it all goes to plan for you, and the side effects aren’t too bad. I finished my programme of chemo last Friday, and it was a great relief to have finished. One side effect I had was similar in that my wrist always felt like it was sprained after the chemo had gone in through a cannula in the back of the hand. This usually lasted a few days, and occasionally I would wear a wrist support to ease the discomfort.

[rab]

Well I've got through the first week of chemo,

there have been bad days and some not so bad.

 

I was sick on the second day, but then realised

I'd been a typical man and not read the instructions properly, I was only taking one anti-sickness tablet

instead of two.

 

Had trouble with diarrhoea over the weekend,

but that's settled down again now.

The fatigue really set in yesterday, but of course

it's difficult to know how much of that is down to

the hot weather.

 

As well as the expected side effects, I've had

1 or 2 unexpected ones, like first bite syndrome,

really bad pain in the jaw when starting to eat.

After the 1st mouthful, it goes away, hence the name

The trick is to take a small bite to start, then

it's not so painful.

 

The vein where they pumped in the chemo is still sore,

it's gone hard; apparently the veins do soften up

after the treatment ends, but it can take a while.

 

So another week of the oral chemo then a week off.

I have all sorts planned for that week, but it will

probably take most of the week just to get to

somewhere nearly normal.

 

Only eleven more weeks to go

[Andrew P]

You'll soon be counting the days, not the weeks.

 

Glad your still up for posting, and keeping us informed rab.

 

Thanks.

[BSW01]

Brian, it will go a lot quicker than you think.

 

Yesterday I saw my oncologist and got the results of my blood test a couple of weeks ago. Although my PSA has risen slightly, from 0.4 to 0.75, they are still very pleased and I’ll continue with 12 monthly check ups.

 

Tomorrow marks the 6th anniversary of my very first chemo session, which lasted for 2 years. It started 1 dose every 3 weeks for the first 6 doses, then every 4 weeks after that until the 2 year cycle was up. By the end my veins were starting to protest, it being very difficult to find an entry point, despite swapping hands every time.

[rab]

Brian, it will go a lot quicker than you think.

Yesterday I saw my oncologist and got the results of my blood test a couple of weeks ago. Although my PSA has risen slightly, from 0.4 to 0.75, they are still very pleased and I’ll continue with 12 monthly check ups.

Tomorrow marks the 6th anniversary of my very first chemo session, which lasted for 2 years. It started 1 dose every 3 weeks for the first 6 doses, then every 4 weeks after that until the 2 year cycle was up. By the end my veins were starting to protest, it being very difficult to find an entry point, despite swapping hands every time.

Your 2 years of chemo puts my 3 months into perspective.

It seemed a long time when I started,

but it's nothing compared to 2 years.

[BSW01]

Your 2 years of chemo puts my 3 months into perspective.

It seemed a long time when I started,

but it's nothing compared to 2 years.

I don’t think the chemo I was on was a strong as most other chemo, in fact it was quite mild when compared to most, but chemo none the less. I also had 37 doses of targeted radiotherapy, once again I didn’t suffer any of the burning than can arise from such treatment. I was told to expect to give up swimming at some time or other, as the water treatment in the pool may make things worse. Luckily I was able to carry on, but it did make me very very tired!

[Purley Oaks]

I had my 1st dose of oxalyplatin today.

The only real problem I've had so far

is pins and needles in my arm.

When it started, the nurse reduced

the pump rate which helped a bit but

of course that meant it took an hour

longer to run it all through.

The numbness is gradually going but

I must remember next time to have it

in my right arm; I'm left handed and

my fingers aren't quite going where

I want them too. I'm starting the

tablets this evening, apparently the

side effects (if any) may take a

couple of days to kick in.

 

 

Well I've got through the first week of chemo,

there have been bad days and some not so bad.

 

I was sick on the second day, but then realised

I'd been a typical man and not read the instructions properly, I was only taking one anti-sickness tablet

instead of two.

 

Had trouble with diarrhoea over the weekend,

but that's settled down again now.

The fatigue really set in yesterday, but of course

it's difficult to know how much of that is down to

the hot weather.

 

As well as the expected side effects, I've had

1 or 2 unexpected ones, like first bite syndrome,

really bad pain in the jaw when starting to eat.

After the 1st mouthful, it goes away, hence the name

The trick is to take a small bite to start, then

it's not so painful.

 

The vein where they pumped in the chemo is still sore,

it's gone hard; apparently the veins do soften up

after the treatment ends, but it can take a while.

 

So another week of the oral chemo then a week off.

I have all sorts planned for that week, but it will

probably take most of the week just to get to

somewhere nearly normal.

 

Only eleven more weeks to go

Hi Brian

 

Sorry to hear that you've experienced some problems;  the worst thing for me was the pins and needles in the arm afterwards - taking off my shirtsleeves was surprisingly painful but just for the first night then it all calmed. Watch for pins and needles in your toes and let them know.

 

I used to count down my chemo in percentages - I had 8 in all, so after the first one had completed 12 1/2%, then 25%, then 37 1/2% and so on. Got me through it.

 

Enjoy your week off!

 

Mal

[Purley Oaks]

Jane McLelland has just published How To Starve Cancer, which combines a lot of things, from diet to supplements to off-label drugs i.e. drugs the NHS doesn't prescribe for cancer but which have been shown to be useful combatting various types of cancer.

 

The book brings a lot of medical studies together in one place, probably for the first time. Even so, it's a surprisingly easy read.

 

Jane was diagnosed with stage 4 lung cancer seventeen years ago and given three months to live. 

 

Disclaimer: I have no financial interest, but am a member of Jane's Facebook page for off-label cancer drugs.

 

Book details here, but can be found in all bookshops: https://www.amazon.co.uk/How-Starve-Cancer-Jane-McLelland/dp/0951951718/ref=tmm_hrd_swatch_0?_encoding=UTF8&qid=&sr=

 

Mal

[Gwiwer]

Thank you Mal.

 

It is of course purely academic now but my late partner of 30 years ago was also diagnosed with Stage 4 lung cancer after being unable to regain her breath after a shower.  The hospital tried hard with several rounds of chemo and she looked as though she might pull through for a while.  But a few months later she had succumbed after being hospitalised with what would normally be a minor infection but which she no longer had any resistance to.

 

C'est la vie.  It's good to hear of those who manage long-term survival but we have to face the fact that this will not be the outcome for everyone.

[rab]

Well I started the second round of chemo on Tuesday.

I felt ok for most of the time the drip was running,

apart from the tingling in the hands which I was ready

for this time, but towards the end I began to feel

quite strange. I felt really weak and was sweating.

I tried to get up to go to the loo and could hardly

move my feet. They had to put me in a wheelchair!

They kept me there for an hour, checking bp, temp etc,

but everything was normal so they put me in the wheelchair again and wheeled me out to a taxi.

 

I felt a little better once I'd got home and lay down

for an hour, but all day yesterday my hands were shaking.

And they tell me it gets worse each round, oh well.

[Purley Oaks]

Well I started the second round of chemo on Tuesday.

I felt ok for most of the time the drip was running,

apart from the tingling in the hands which I was ready

for this time, but towards the end I began to feel

quite strange. I felt really weak and was sweating.

I tried to get up to go to the loo and could hardly

move my feet. They had to put me in a wheelchair!

They kept me there for an hour, checking bp, temp etc,

but everything was normal so they put me in the wheelchair again and wheeled me out to a taxi.

 

I felt a little better once I'd got home and lay down

for an hour, but all day yesterday my hands were shaking.

And they tell me it gets worse each round, oh well.

Hi Brian

Sorry to hear about the side-effects. But looking on the bright side, two down and only two to go! Enjoy the week off when it comes!

Mal

[rab]

Hi guys, haven't been in touch for a while, but I've had a rough couple of weeks. Didn't feel too good last Wednesday, Started vomiting late evening which continued all night on and off. That wasn't too bad as I could have 'a suitable receptacle' close by. About 5:30 I needed the loo, I got partway between the bedroom and bathroom, felt a bit strange, and the next thing I knew I was on the floor with my wife shaking me to wake me up.

 

The upshot is I've been in hospital, while they try to sort me out. The vomiting has stopped but the other end is still out of control.

 

Something good has come out of this though. The oncologist saw me on Tuesday and gave me the option of stopping the chemo. I was ready to say yes there and then, but he told me to think about it and he'll see me in a fortnight. Stopping now would increase the chances of the cancer returning by 5%, but after what I've been through the last couple of weeks, I'm prepared to take that chance.

[PeterBB]

Sorry to hear that the chemo is causing you and yours problems.  Good to think that your oncologist suggested 14/7 to allow you to really think out where you are and where you and your wife decide you want to be.  Thinking of you.

[Gwiwer]

Sorry to hear the news Rab and I hope that things can be balanced and sorted out for you quickly and comfortably.

 

In other news I learned over the weekend that one of my walking companions had lost her battle and had passed away during the week gone.  We both set out to walk the entire South West Coast Path as individuals and became friends along the way helped significantly by the catalyst of social media.  

 

As I now intend to complete that 630 mile walk with an outing to Portland tomorrow and crossing the finish line at Poole Harbour (South Haven Point) on 8th September I shall on both occasions be wearing a copy of the picture that we took of us together last year in Perranporth.

 

R.I.P. Tatjana.  I will carry you over the line.

 

[Purley Oaks]

Oh that sounds nasty, Brian. I do hope that you're sorted soon. Think you've made the right choice, but you can always change your mind.

 

Hope you feel much better now

 

Mal

[rab]

A post from Mal (Purley Oaks) has reminded me I haven't updated you good people on my situation since coming home from hospital. I'm doing ok but progress is slow. I still feel weak. I get up some mornings feeling I could do something a bit more strenuous, but that's as far as it gets. By mid morning I'm sat in the chair with a cuppa.
I am managing to exercise a bit, but not much.

We saw the oncologist last week. They kept saying I will get better but it will take time, but they didn't say how long. I see them once more then I'm under the care of the colorectal team.

I went to the Macmillan Support Centre end of last week, as I was feeling a bit frustrated and fed up. They were really good, they helped me to accept where I'm at. They said they think if all goes well, I could be back to normal by Christmas.

One good thing that's come out of this is I'm spending quite a bit of time on the computer planning the layout, which will get built, one of these days. I'm finding that a bit frustrating though, I'm using Fusion 360, and although I've used other 3D cad systems, I'm learning as I go along.

I guess I must be thankful I'm as well as I am.

Thank you all again for your support and thank you Mal for thinking of me.

[Gwiwer]

Hi Brian

 

Treatment for this wretched condition can take quite a toll on us and we are all affected in our own unique and different ways.  One common factor is tiredness.  

 

I was warned of the cumulative effect of radiation (in my case) which continues to build for a time after treatment ends.  I had 30 doses of radiation and for the first half I barely noticed any changes.  But then the tissue reddening and swelling began to be noticeable and I started to feel very tired.  Despite trying to work right through I ended up having to stop work two weeks before the treatment ended and booked a total of four weeks off.  I slept a good deal of those four weeks.  

 

After all that rest I wanted dearly to get back on two feet and resume work but the body said no.  I simply wasn't ready yet.  I needed more rest.  My employer generously offered me another four weeks of fully-paid leave on an ex-gratia basis and within that time I made major advances on the layout.  Having all day every day to do as I pleased and being able to simply go inside and sleep any time I needed to was a huge boost to how I felt and to the recovery process.  It is probably fair to say that had I not had those weeks of rest and leave, free from the worry of whether I might have a job to return to and how I might line my pockets during my recovery, that the layout may not have ended up being as well-developed and as well-known as it was.  The whole process was - ultimately - immensely satisfying even if the means of getting there is something I would not wish for anyone.

 

Keep us posted.  Keep yourself rested.  The body is fantastic at healing itself but it needs to be allowed to do it at its own pace.  Anyone who has been through treatment has had major medical intervention be it surgical, medicinal, radiological or some combination of those.  We take time to get over that.  And thankfully many of us these days do get over it.  Every strength to you.

[Purley Oaks]

There's a piece about Jane McLelland in today's Mail on Sunday here:

 

https://www.dailymail.co.uk/health/article-6323993/How-secret-surviving-cancer-inside-medicine-cabinet.html?fbclid=IwAR1UIiCxbzHKHEV8e-T05G2ZbfgtQd2ov0yKQIPHrNN40QHUp6_zyl-gu3U

 

so you don't have to buy it!

 

Mal

[bike2steam]

Hello guys, seems as tho' I've joined the club, was diagnosed with 'Multiple Myeloma' a couple of weeks ago, due for my first round of treatment tomorrow - hey-ho.

[Andrew P]

Hello guys, seems as tho' I've joined the club, was diagnosed with 'Multiple Myeloma' a couple of weeks ago, due for my first round of treatment tomorrow - hey-ho.

 

All the best Paul.

[Ian J.]

I'm sorry to hear that, Paul. I hope the treatment goes well and you make a full recovery.

[bike2steam]

Thanks everyone, I must admit it's knocked me for 6, but I know I'm not alone - the fight begins.

[rab]

I hope all goes well for you.

I'll be thinking of you.