Actually I am replyingto you all here

Gill I have not had my treatment plan given to me yet ... I am awaiting it ... but as a project managers i am try to virtually assess whats that's goingto be with the assistance of you lot ... yep i know there will be diviations

Simon thanks for the advice on the treatment most usefull

Guzzle ... I am a boit closer to Addenbrookes, but I am looking at having my treatment in Norwich ... i am 40 moins from both ... but i can see the benefit of staying over .... am i wright in thinking then that Simon your chemo treatment was 8 hours but Guzzle yours was 12 (4+4+4)

Gill what was you Chemo Treatment

Ok folks time to blind you with Science, my wife came up a point that there are two types of Radio therapy ... There is Radiotherapy or there is IMRT ... IMRT appears to lessen the impact on the saliva glands and thus your tastebuds and oral compliations i have put two links in below on this

http://journals.lww.com/oncotimesuk/Fulltext/2011/08000/IMRT_better_than_radiotherapy_in_treatment_of_head.1.aspx

http://www.dailymail.co.uk/health/article-1089091/Why-wont-doctors-face-dangers-radiotherapy.html#ixzz33lm3R9T3

I have fired of an email to my consulatant ... I am sure they are going to get fed up with me ... but hey i have to go through this ... if i can get the best treatment that "could" limit side effects and its suitable treatment and on the NHS then ... if you don't ask you don't know

Did any of you have IMRT or justthe normal radio therapy?

Vatch mine was IMRT. I presume longer blasts as I only had 3. Replying to all is time efficient! G.

Guzzle now that is interesting ... I wonder if this is the reason why you have got so far with being able to eat?

Reading the facts it certainly appears to assist with limiting the effects duringthe 6 weeks of treatment and because of this help ther recoup afterwards

How are your tastebuds ... can you tast anything?

How about your saliva gland production ... minimal but aware that it's still working .... I think IMRT still impact on these areas, but not as hard

Simon/Gill do you know what you had?

Hi Vatch

The moderators asked the nurses if we might be able to add anything to your discussion. I hope the following helps.  IMRT is now available across the NHS so if it is the right treatment for you it is likely that it will be available.  Your doctor will be able to tell you whether it is suitable for you and if they are referring you to a centre where it is available.  But it is available in most areas now.

Your doctor should also discuss with you any potential side effects of treatment before consenting you, so again it would be good to talk this through with them so you know what to expect.  The Daily Mail article you linked to gives some extreme examples of things that some people have experienced, but I think it is fair to say that most people don¿t have quite such severe problems as the ones described in the article.  You do need to know what to expect though, so you are doing the right thing contacting your doctor.

When you next see the team at the hospital ask if you will be referred to a specialist nurse.  If you are they can be a good point of contact for you and  are usually pretty good at helping with suggestions of how to deal with any side affects you might experience.  You can also call our team of nurses on 0808 800 4040 if you think it might help.  The lines are open 9 to 5 Monday to Friday.

I hope that helps

Martin

Martin

Thanks for your reply and yes I am aware that i may or may not suffer to the extent that is reported in the daily mail link ... its good to know what the range is though even though i may pitch somewhere in between

I think my natural instict as a project manager is just kicking in here, although i am in the hands of experienced and knowledgeable professionals in the NHS, I tend to try take a role in the decision making process (or is that me just being bossy, my wife is best to answer that) and one that comes from a knowledgeable stand point.

My situation has happened very quickly and the paperwork is only just catching up with all the telephone calls that have gone on and I am sure that once i get a designated treatment team, then things will move in a more informative manner.

However although i must say that the NHS have been absolutely brilliant with trying to get me diagnosed, ive sort of been left alone to deal with this and try to understand what is going on emotionally. Yes it has been expalined to me that i have a secondary cancer and work has now finsihed to try and locate the primary and that i am about to now get asigned to me treatment team .... all that has been explained. In a way i think its me being impatient and i am sure that all cancer sufferers hate these days of waiting, days until the next appointment or the next milestone. But I also understand that there is a process in place behind the scenes here and things can not be decided until certain facts and knowledge is in place and that all takes time

I am sure that once i get my McMillian nurse then i will have the knowledgeable ear to bend

But until that time although I am being asked "are they any questions" my response is ... well yes there are but i dont know enough about the subject to be able to ask the right questions!!

Perhaps i am therefore expecting too much of an already stretched fantastic nhs service and all will be eased when i get assigned to a treatment team because thats the right time for this to happen

But with all that you go through (and i have got off lightly as opposed to some on here) its just that not knowing where you are, where you are going and a path forward that is just uneasy ... actually i think its just my ocd project management process kicking in.

The internet is a great source of information but it can also lead you down a merry path, some of those too dark that it only leads to confuse and concern.

Im rambling, but it helps to do so at the moment, but i will finish my ramble now

Thanks

Vatch

Hi Vatch

My treatment was nothing like yours as I was diagnosed with Lymphoma.  I had 6 full sessions of R-Chop with the addition of and additional trial drug which was Bortezimub.  No Radiotherapy at all.

Both Simon and Gary (Guzzle) have been through similar to you and probably the same treatment so wil be able to give you much more info than I can.

As I said before once you get your treatment plan the time will march on more quickly than you expect.  Can't believe I have just completed my first week at work.  Only three mornings byt it seemed so far away when I was given my diagnosis.

Best wishes and let us know how you get on.

Gill

Hi Vatch,

To answer your questions...

1. Yes, I had IMRT. This allowed the radiation to be targeted more precisely and so hopefully reduce the damage to otherwise healthy tissue. I still have a lack of saliva but my taste buds are not too bad (although sweet stuff tastes strange so I just avoid anything that contains refined sugar).

2. My chemo sessions were of 8 hours duration. I did a movie before lunch and another in the afternoon to help the time pass. There were several different drips to get through each day including an anti sickness one.

Hope this helps matey.

Simon.

Gill

I am aware that our cancers are different but I suppose mentally and emotionally we all go through similar processes....so its good to get your feedback especially about how you are adapting and dealing with getting back to work....

So im aware its a big step for you....a massive milestone in your recovery......I hope it all went well

vatch

Lol thanks simon

and there was little misguided I thinking that id stumbled and some a class treatment in the imrt radiotherapy thinking that it was going to drastically reduce my side effects...then I find out that a lot of hospitals have....oh well.....perhaps im trying to organise my destiny too much and now is the time to put my hands of the people who know what they are doing...so its goodbye to mr control freak for now....chillin all the way for me.....the sun is out today so im goung to give my brain a cancer rest today and enjoy life

thanks for the hint simon on the films....I will get that one sorted

when you started your treatment did you have your chemo first the your radio therapy and does everyones treatment start monday to friday....im assuming it does just wanted to confirm.....opps mr control freak kicking back in there...chillllllllllll

right dental check on tuesday and back to addenbrookes on wednesday....all they are going to do is give me results of biopsies and tell me the next stage...so I will wait till them

I hope everyone is making use of the good weather today and hope you are all wevatch

Vatch, Bank Holidays can throw your  schedule out of synch. I got Netflix which was a boon as hospital  had good wi fi. I found radiotherapy times varied. Chemo took me similair times to Simons and meant staying in. This wasn't so bad as you could  align it with nurse Dr. appointments. The time gos quickly.

Good Luck Again, let me know if you need anything. G.