Hi to everyone on this thread. So reassuring, thanks to you all. I had a first cycle on Tuesday and was very nervous about it all, so no you are not a baby Charlie. I still am quite nervous in a way because both my husband and I misunderstood the drug dosage for the anti-emetics. I keep asking myself, were we just particularly stupid that day; but I don't actually recall being given instructions and the label on the box was ambiguous. So Tuesday afternoon and evening massive vomiting. Got it clear the next day so am over the worst now - just queasy really and hope to avoid that when I go back for round 2. Just hope the cancer cells feel as rotten as I did! And there's no way I could have been in work! GP has been great about saying take all the time I need and school have as well. Mind I was ill for all the school summer holiday when we wouldn't have been in anyway - not till the last week when it all starts up again to be sorted before the children arrive.

All the best, keep us posted. You are just a bit ahead of me.

Hi all,

I am to have my first experience of chemo tomorrow. I had part of my bowel removed in July, keyhole surgery, but I am to have chemo as well. I have joined the SCOT trials for the chemo and have drawn a 6 months course. I believe I will receive Oxaliplatin, 5FU and a folinic acid called leucovorin (which is supposed to make the 5FU more effective). I will receive this every 2 weeks; last Thursday had a Hickman line put in for administering the chemo which I may already have treated wrongly. I had a shower this morning then read on the internet that you are not supposed to wet the Hickman line!! Woops I shall of course tell the nurses at the clinic.

I am told most people go home alright after this, there are of course side effects but I am telling myself other than tiredness I wont get any! We shall see!

Thank you Eyore for mentioning about the anti-emetics. I shall make sure I ask about the dosage before leaving the hosp tomorrow.

I hope you are feeling ok. These sites are so good that we can not only 'compare notes' but chat with each other. Thanks to all of you.l

Hi Carol.D, I'm passed for round 2 chemotherapy tomorrow and the nurse advised me to start domperidone (anti-emetic) today so that I have it in my system already. I'm hoping that does the trick in controlling vomiting. In consideration of my well-being and as my bloods were ok, I went for a swim today as before I was ill I used to swim a lot. Does anyone have any advice about when/if swimming is alright whilst having chemotherapy? I know there is a risk but as my surgeon said 'all life is uncertain.' Just that after a cancer diagnosis one's own life seems particularly uncertain. Still must stay positive! Feel more normal having been for swim at any rate.

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.

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.

That was a very useful message, Carol D. I stopped the chemo (caecitabine tablets) end July after 6 months and I almost immediately felt myself again. All my energy returned. I would hate to have to go back on it - not because it was all that bad but just a bit unpredictable so I didn't feel happy about going away from home to visit friends in the country. Personally, I found being involved in voluntary work which had to be done if at all possible, was my salvation. I couldn't just collapse unless I felt really bad which I didn't. Grandchildren like Josh, are a great help. I have several older than your Josh so I think I must be older than you (78)

One thing that may or may not be related indirectly to the chemo was an lump that developed in my groin. I couldn't believe it was malignant because I felt so well and it wasn't. It did get an abcess and burst (charming!) They are going to remove the lymph node near it but that will just be a day job hopefully.

Good luck everyone.

That was a very useful message, Carol D. I stopped the chemo (caecitabine tablets) end July after 6 months and I almost immediately felt myself again. All my energy returned. I would hate to have to go back on it - not because it was all that bad but just a bit unpredictable so I didn't feel happy about going away from home to visit friends in the country. Personally, I found being involved in voluntary work which had to be done if at all possible, was my salvation. I couldn't just collapse unless I felt really bad which I didn't. Grandchildren like Josh, are a great help. I have several older than your Josh so I think I must be older than you (78)

One thing that may or may not be related indirectly to the chemo was an lump that developed in my groin. I couldn't believe it was malignant because I felt so well and it wasn't. It did get an abcess and burst (charming!) They are going to remove the lymph node near it but that will just be a day job hopefully.

Good luck everyone.