My story (it might stike a chord with you) Pt3

[ColinT]

Well it is some time since I added any to my little tale but as I have had a few changes and a setback I thought I would add a few notes and post some questions to see what response there is in the "New Normal" world. The details may wander a bit and thre may be too much info, but without putting "pen to paper" it's difficult to know how far to go!

The first thing is to wish all a better and peaceful New Year with no negative changes to your lifestyles. i.e. it must be positive from now on.

Four weeks ago I found it was becoming more difficult to swallow and having read and asked a few questions I decided that all that I needed was a simple "stretch". How wrong was I !! The doctor who did the endoscopy told me in no uncertain way "it's come back" Well I was devastated to say the least. I had been feeling so much better and was even going to the gym on referral to get fitter and started up my Thai Chi sessions (still going back in the NY). So to be told in such a blunt way wasn't good and having to wait all this time for a CT scan was sooo depressing. Took the edge off Christmas completely, just need to say that without the support of my wife and daughter it would have been so much worse. If you have a team like mine you won't go far wrong.

Anyway back to the tale, I saw my consultant yesterday and I have now got a number of options to go down. He still needs to do some homework to see which may be the best route to follow. It looks like I have the following options:-

1. No treatment - not really an option

2. Chemo with a slightly different Platinum derivative with tablets

3. as in 2 but with Radiotharapy. This depends on location of last Radiotherapy site

4. Clinical Trials of new drugs either at Addenbrookes or Royal Marsden

5. Last one is a PDT Photodynamic Therapy for which some trials have been done.

And that's where you guys may be able to help?

Is there anyone out there that has been to the Royal Marsden for treatment and has anyone had experience of the PDT trials or any other trials that may be useful?

In any case it looks like I must have some treatment soon as my cancer is beginning to prevent food getting into my new "stomach". It gets rather painful within minutes of eating small meals but at the moment it wears off after an hour or so. At least I am not loosing weight at present, just managing to keep the balance between exercise and eating is the difficult bit.

So there you go. Happy New year guys

Cheers Colin

[Hidden]

Dear Colin

First of all, our very best wishes to you, and here's hoping that you get the best possible outcome from the treatment. I know quite a few people who have been treated at the Royal Marsden. They have all been really impressed by the treatment and the expertise they have had the benefit of, and I am sure that the same goes for Addenbrookes as well - it is just that being around London means that I am more likely to meet up with people treated at Royal Marsden than Addenbrookes.

The medical team may well make a recommendation for the treatment you are offered. It does take them some time to sort out the best way forward. It will depend on what sort of cancer it is (ie adenocarcinoma or squamous cell carcinoma); where it is; and whether it is a recurrence of your original cancer, or a completely fresh disease. It is very frustrating having to wait for these discussions, but it is a better process to get the best possible medical decision.

It can get quite complicated, and you have to listen carefully to what the medical experts say. So it is a good idea to write down all the issues you want to raise beforehand; and to have somebody listening with you at your next appointment.

I think 'second time round' it can be a whole lot tougher to go through some treatments and to keep up your morale and stamina for it; it raises all those memories of the first time. A few weeks ago I was talking to somebody who has gone through a whole lot of treatment, successfully, after suffering a second diagnosis of oesophageal cancer when they thought that they had well and truly beaten it the first time. I am pleased to say that the treatment was successful, and they were really pleased that they had persevered and gone through with the treatment. So if it works OK for some people, we'll be hoping that it is going to work well for you as well.

It is not the best way to end the year, but all the very best for 2012 to you and your family.

Alan

[ColinT in reply to Hidden]

Alan,

thanks v much for the notes and yes I will be taking my daughter when I go as she is in the NHS as a Physio and knows some of the good questions to ask. She also has a vested interest in me. By the way this will be the 3rd set of treatment so 3rd time lucky eh.

I will know more next week but its looking good as I gave googled some of the info but not building up my hopes for any particular type of treatment, just one that works.

Cheers Colin

[fredsonic]

I am in a similar position. Have just had Radiotherapy on a secondary in my spine. A bit uncomfortable at the moment, but there is supphosed to be some pain relief from it in the longer term. Next step is more Chemo in January for the tumours in my Liver. Can't do more than offer good wishes. Hope you get sorted.

[VerenaSmith in reply to fredsonic]

Wishing you every success with you treatment Fredsonic, I am so sorry that you have to go through all of this. Keep strong and positive although it must be very hard for you. We are all routing for you.

All the best

Verena. x.

[ColinT in reply to fredsonic]

Fred,

thanks, I am hoping that the next bit of radio therapy is going to work if thats whee I am going but as it is close to the previoous site they may not be able to angle the beam over enough to miss the previous one. Thats why I am hoping for info on the PDT. It may not be that type though. As I said to Alan, i just want one that works and leaves me free for a longer period.

Hope yours goes really well and post the results if you feel up to it.

Cheers Colin

ps Happy New Year

[Demon in reply to fredsonic]

Fred

Just wanted you to know that I have been thinking about you and your family, I hope the pain management is going as well as it can be.

Steve

[VerenaSmith]

So sorry to hear or your new diagnosis Colin. It must be so frustrating having to wait to hear what will be best for you but the multi discipline teams do a great job of finding the best solution. Treatments are so refined these days that there are so often very positive outcomes such as the one Alan just described. So keep strong, We will all be routing for you.

Very best wishes

Verena.

[ColinT in reply to VerenaSmith]

Thanks so much Verena. It's good to know there are people out there rooting for you.

Hope you are ok and no more treatment for you.

Cheers Colin

and a Happy New Year to you as well

[Demon]

Hi colin

I am sad to hear of your illness returning, I hope they can find you a workable treatment paln.

Alll the Best,

Steve

[ColinT in reply to Demon]

Demon,

Looks like it should be ok this time. See my reply to Cherry and thank for your kind words.

Colin

[cherrybailey]

Hi Collin, so sorry to hear your news, cant imagine what you and your family are going through.

I cant comment on any of the options you have to choose from, except the Marsden.

I was under them throughout my cancer journey, all the tests, treatment and op!

(Mine was cancer on the join of the stomach, oesophagus)

Can only say in my experience!!! (If you choose that option) they were amazing!!

I wish you all the best and hope you get help on the best route to go down.

[ColinT in reply to cherrybailey]

Hi there Cherry, thanks for your support. I had my first chemo (Carboplatin) at Bedford today and so far (5 hours later) it hasn't really made me feel too bad. I have only had some of the tablets so far and my consultant has still to do some homework about the PDT but it looks like I will carry on with Bedford for my normal chemo infusions. The PDT (if it happens) will be in Goole , Cheshire I think. The info on the MacMillan site for PDT sounds pretty good about it with a fair amount of good vibes. But as I said before I dont want to pin my hopes on something that is not entirely suitable. However it is a process that uses non ionising radiation which must be better than the standard radiotherapy. I will update my blog as we go along an let you all know.

Cheers Cherry x

[cherrybailey]

You are in good hands!! Your consultant doing homework, consulting up and down the country best for you!! Keep up the good work, strong and positive! Pleased the chemo not made you feel too bad! Hope this early treatment works out for you!