Hi Susanlynn and everyone,

Thanks for your nice message, glad it was of use.

Isnt is strange how we all differ so much. I am up for my 2nd chemo tomorrow. After my first one, although I was given medication for diarrhoea, which seems to be the most usual from the conversations on the forum and the fact that they gave me anti Diarrhoea medication, I in fact was constipated! (for about 3-4 days) This time I am ready, I have have a large packet of prunes!

Cheers for now

Good to hear from you Carol D. I got the impression from the forum that sickness and nausea were the main problem. When I went for my sessions they always alsked about constipation. I think I would rather that than diarrhoes, where one has so little control. I hope the prunes worked. Just before I was diagnosed but obviously had something wrong, I had your problem and my GP prescribed something recommended for diverticulitis.- something you sprinkle on soup or cereal. It was effective but not violent.

Hi Susanlynn and everyone,

Mmm the prunes have only worked to a degree. I think perhaps I have been eating things that are too fibrous. Yes I am suffering from constipation again! I have taken orange juice as well as the prunes and also I think perhaps I should have been drinking more fluids so I have upped them and it is easing up. The constipation only seems to last for a few days, just until my body rids itself of the heaviest of the chemo I think and then seems to settle down. When I next go for chemo I shall ask for a medication to take for the constipation for those few days. In the meantime, today for example I shall eat pasta!

However I must admit that I am glad I dont have diahorrea as then I may have to stay at home all the time!

I think sickness and nausea probably are the main problems hence the anti-emetics. The medications prescribed seem to cover me alright (so far!) but do not do enough for a lot of people.

I suspect that I am really lucky too in that if I had to have cancer !! (none in family, nothing normally associated with cancer, so no reason to expect to get it) then the cancer was found through the new bowel screening scheme which picked me out long before having any actual symptoms. Though it is a bit odd not to have been ill. Apparently if we had waited until I had symptons, possibly another 3-5 years, it would be a completely different story for me and my cancer would have been much further on and much more invasive probably.

It must be so difficult to calculate the medications for us all. I dont think there are two of us who have exactly the same cancer problem or medications and even if we do, then we will have different body requirements (our general health, weight ,height etc). I think it is amazing that everytime I go for chemo that they take the bloods and from them (and the questionnaire on symptons suffered since last time etc) calculate what medications I need this time, and assuming they do that for every single one of us, it is some task! All I can say is a hearty thank you to everyone involved in helping us! and to all those fund raisers - Did you see all those people on the tv today who have completed the Gt North Run 1/2 marathon. Loads of them were running for us! Phew it all gets a bit emotional this doesnt it, think I'll stop for a while.

Cheers to you all - how is work going Charlie? Are you ok there now?

Take care all,

Can I just say that I went through ten sessions of the Oxylaplatin/5FU combo treatment after being operated on for a single tumour bowel cancer in December, 2005.

It was Dukes C class, meaning it spread outside the walls of the bowel, so the treatment was recommended for me. Yes, it was six months.

The Oxylaplatin is the most voracious. Within a few sessions I found that my hands, feet and lips would go numb and lose taste .. something that wears off after a few days. But towards the end it was becoming more and more prevalent and toxic to my body. My hands, feet, lips and toes would go numb but it would barely wear off before I was hit with the next round of chemo.

I was due to do twelve but it was cut to ten because of the effect it had on me. Now it effects people differently. So my experience is not necessarily common. The important thing to do is tell the nurses and specialist what you are experiencing and tell it as it is. If you are suffering you must say, that's my advice. That way they know whether to reduce the dose.

In fact that's the advice for everything. Anything wrong, take medical advice. Don't be scared. It's better to be safe than sorry.

I know that because the only symptoms I had was going to the toilet more often than would be the norm!

It took about a year to get rid of the after effects of the treatment.. caused mainly by the Oxylaplatin. It can leave you with what you fear is a permanent numbness and tingles in your fingers and toes. But thankfully I can report it wore off for me very very slowly. To the point now I am touch typing away quite happily and would not have thought that I had ever gone through the treatment.

Incidentally, I finished my treatment on June, 2006. It's now October, 2008. And I have had clear checkups on CT Scans colonoscopies ever since.

Not only that but my wife and I had our first wee boy six months ago today. Josh. I never thought i would see the day when we would have had a baby when I was first diagnosed and had two days when I was not sure whether it was isolated or whether it had spread and that it was untreatable.

What shocked me today is a colleague of mine who talked to me about my treatment, having had skin cancer about ten years ago, has today died of secondary melanoma. It had taken a real hold and he is no longer with us.

It is very upsetting when I think that the way he would speak to me was as if what he had was no big deal whereas what he had WAS.

I feel very thankful that I am still alive. And thankful to the oncologists, surgeons, doctors and nurses out there who are not infallible in an area which is not an exact science.

But without them, I wouldn't still be here. And Josh wouldn't exist.

Finally I would just say, don't fear the op, and don't fear chemo. It is hard work. Hard going. But it really will help. In the end that's all that matters.

hi charlie. sorry to hear about your diagnosis and needing chemo. i dont know if what i'm going to say will help you as i dont have first hand experience. however my mum was sadly diagnosed with pancreatic ca earlier this yr, and as she did not want conventional treatments, we opted for an alternative approach. we found an australian hypnotherapist called dr rick collingwood, who is i guess australia's paul mckenna. anyway he had done a lot of work with cancer patients, so we contacted him to help my mum, who at the time was in extreme pain, very depressed, unable to sleep and not really eating. he recommended his cancer and mind body healing cds for her to listen to at night, and i swear overnight each of the symptoms improved, to the point that within a few days she was back to 'normal'... anyway rick did also come to london to work with her as well. anyway even though she did not have chemo, we obviously researched rick's work well before paying him to come here. he has actually done a cancer trial, and worked with many cancer patients. he has managed to effectively 'wipe out' the effects of the chemo nearly completely in all patients, and totally in some. to me it sounds worth a shot, as i saw mum go through chemo for breast cancer 2 years before, and i only wish we'd found him before. anyway if you are interested the company is called mind motivations uk (you can find it by googling it)- his cds are there, as well as results of the trial. i do hope this is of some help, and good luck with everything. farah

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Hey Martin that is a really lovely message of yours there.

I am on much the same chemo medication (I'm on a Scot Trial) as you were for a cancerous polyp which was cut out in July but which unfortunately had made contact with one of the 33 lymph nodes removed.

I am lucky so far (hve just had my 4th chemo (of total of 12) and am still out and about and feeling pretty good considering what is going on inside me. As you say though even if only have a few side effects at present, I have found that they are accumulative so I am doing as much as I can before I cant! - if that happens!

I am lucky that I have only had one day of being queasy and I took the Domperidone pills which made my face scrunch! my muscles all tighened up. Most peculiar, however they did ease up with some massaging as did my right hand that went stiff spasm like. Anyway I only took the 2 pills and decided I wasnt feeling that qeasy! and was ok afterwards, luckily. At the hosp they changed my optional anti-emetic, the Domeridone to Cyclizine to try and avoid the above. I think the Domperidone must have affected the chemo and stimulated these spasm bits as they are similar to what I get (milder) from the chemo. I hvent tried the Cyclizine yet as I have been ok.

My hosp went on about getting diorhea (who the heck decided on the spelling of that word! he he) but of course I got constipated. I tried sorting this with prunes and orange juice but they werent strong enough so the hosp gave me senna which worked fine and now my body seems to have settled down a bit and I havent, at present got either but have medication for both so am ready.......

As you say, i think we have to keep on going with our medications anyway, we have a Maggie centre next to my hosp and you can get free compimentary therapies, reflexology and massage and aromatherapy and I also wear magnets , think all these things are positive and that is my line.

I am presently typing with tingly fingers too which are staying with me longer than they used to and my toes have joined in. I do find that warming them up helps a bit. I have been wearing gloves whenever I go outside and am going to M&S to get some better ones this afternoon. Only tingly toes are difficult, I have on my tights socks and boots but they are still tingling away there.

Your messge was lovely though Martin, full of hope and positiveness and lovely little Josh! - but also a little warning as regards your friend, what a shame.

All the best and thanks from me.

Carol.d,

Firstly, forgive me if anything in this message repeats what I previously said. I can't see the message.

I was amazed by your message.

Because I had a cancerous polp cut out too and mine also made contact with one of many lymph nodes removed. How weird.

Which just put me into Dukes C - I think it is. The same as you.

That was all in December, 2005. And I have come through what you are going through and out the other end.

It was quite emotional to read our piece because it reminded me of my time in the Beatson and all the weird feelings.

The lack of feeling was weird.

But yes the Domperidone - I think it is - does help.

The important think with the therapy is that they give you the right level of dose for you to be able to handle. The don't want to make it too weak that it doesn't have full effect but they don't want to make it too strong so that the after effects are bad.

As I may have said I had to stop after 10 out of 12 because the after effects were getting too much. That doesn't mean it wont have a chance of being effective. It just means you have had enough.

It was just by then there was barely a time when I was not getting lack of feeling in the tootsies and toes and taste... what was that?

But you know, it is amazing how you go through it.

Everyone says chemo is hard but it is perhaps not as hard as you think it is going to be.

Maybe towards the end it was tough going and I was more sickly.

I know about typing with tingly fingers, but my one advice would be always tell the doctors and nurses if you something is not right.

If the after effects are too much, tell them.

Also there were issues with my liver functions. In that, it was not up to speed, but they would spot that and delay the treatment.

Your treatment is often only as good as your communication of your symptoms.

I don't know whether I said, by my colleague actually died.

Which was very upsetting.

It was a matter of weeks.

He had secondard melanoma (skin cancer) and it was all over his abdomen.

I went to the funeral service and found it difficult not to be emotional.

Yeah to a certain extent it will be about wondering whether it could be me somewhere down the line.

He was on chemo. But the heartbreaking thing was that it was palliative. You have hope.

I had hope.

He didn't.

And now it's over. I just hope he is in a good place up there.

But to be honest I get moments like that and then I think, well my chances of recurrance the more I remain clear are getting narrower and narrower.

My chemo finished in June, 2006 that's over two years now.

Just been to the oncologist and she says melanoma is different from bowel cancer.

But hey, I feel like I am on bonus time to be honest.

I don't know it is odd. Most of the time now, I forget i went through all that.

It's like a bad dream.

Because I am just the same now as I was before the news was given to me.

Of course, every so often you think about it but not that much.

All those neurological side effects took its time to go but they did go.

Although I think if I was not taken off it when I was, it might have caused more long term damage. So keep an eye on it.

When you see Josh growing up like that. He is six months now. You just thank God, the doctors and the nurses, who were absolutely incredible, that you were given the opportunity to have a wee boy.

Its Halloween today and he is dressed as a pumpkin and I tell you what all that chemo was well worth it to see his little face.

Anyway off to pick him up from nursery. I can't wait to see him.

What a lovely message Martin! Thanks.

As you say, your friend had melanoma which is very different to what you had. Also I dont think the fact that you didnt finish the course will matter because the trial that I am on is to test whether they need to give people 12 treatments. They are testing for whether 3 months instead of 6 months chemo is sufficient. They need to have some people doing the 6 months and some the 3 months to test this. A computer randomly chooses which one you get (like the lottery!). It picked 6 months for me. Part of me would have liked the 3 months but then I may be worried it wasnt enough so I am happy with the 6 months the computer chose. On the other hand if like yourself I cant do the whole 6 months then I dont think it matters because an equal number of people are doing 3 months which is less than you did. Although it is a trial, you can drop out of it at any time if you want to.

So far I am doing fine, I have a few side effects but nothing I can't live with - half the time I can hardly believe there is anything wrong with me, esp toward the end of the 2 weeks just before the next lot of kemo, like now. If I say this to the doctors they get a worried look - I think they think I am going to stop the medication, which would be extremely daft of me, and I will go ontaking it for as long as they say to, assuming it's doing me more good than harm that is.

I regard this all just as something I have to get through and that next summer I will be back to normal (or getting that way) and clear (though I know one has periodic checkups) but it is just a nuisance interruption in my life. I am a generation older than you but I can well appreciate your thrill in having Josh. I have a grandson who is now 2 years old and is of course the lovely-est 2 year old on the planet! and the more I can see and be around him as he grows up the better! Like having my son all over again! except now there is both of them and Mum of course. They and the rest of my family are all very supportive of me too. In fact this cancer has been quite an experience in how amazing the people around one are.

I think it is great that you sometimes forget the cancer altogether and that you ever had it! A bit like stopping smoking! after a while you forget all about them. I stopped 20 years ago now but except that I know for a fact that I used to smoke, it is like a past me that I dont know now. I hope I shall be like you in forgetting about the existence of my cancer.

Actually let's face it perhaps there isnt any there anyway. Perhaps nothing got out any further than that one lump node and once it was removed .....! Who knows! After all this kemo is twofold, one to either kill anything that is cancerous in my body or prevent anything going that way.

Na, we'll be fine, take care, love the life you're in.......etc... (rest of the song that I cant remember the words! he he)

Cheers for now

Hi, Carol.D

I found your message inspiring. I had part of my bowel removed in September and am now having chemotherapy to mop up any cancer cells remaining. I need to have this every week for 30 weeks ( I am to have my 6th dose tomorrow). I'm told that it is quite a low dose so hopefully I won't have too much in the way of side effects. Apart from feeling very tired and occasionally feeling sick I'm not doing so bad. It' just the thought of another 24 weeks of this that are getting me down - any tips for coping?

Your chemo seems to be for the same amount of time, hopefully it will all be over by next summer - any plans for celebrating? We have booked a holiday for next August so there is something to look forward to! It seems such a long way off.....

Do you have any hobbies or interests that help you cope. I normally do card making, but I can't find the motivation to do any at the moment - I just seem to flake out in front of the telly!

Good luck with your treatment.