All about NHL

Hi Colin, good to hear you got some sleep even although your had a few loo visits. 

A good observation/picture about living in a bubble, for some folks they don’t see the bubble and are just normal and do their best to support, for some it’s veru hard for them to find words and Keri g a low profile so not to have to talk about what is going on is safe ground and I have meet people who, when you mention cancer they think you have the plague and if they get to close the will catch something......this is true.

We understand the fear bubble and can look from a position of experiences and knowledge and with this we can stand at the side line and cheer everyone on. 

This is a ‘guilt free zone’ Colin. Every person who are unwillingly strapped into the cancer rollercoaster are hero’s in my book and each and every story is a story of strength and perseverance.

Are you getting the hang of the site. There are lots of other excellent areas you can explore as you gain confidence.

Hello Mike. thank you for your kind words. this is what I mean when I say

you guys have been there, and are helping not just me but many others. 

Thank you all.

Colin.

Colin, as we have said the is no right or wrong your experience is unique to you, some might mirror things that Mike or I or the others have and some won't, by sharing and chatting it helps. Thats why I have remained on the site, it helped me, though it was a different site 10 years ago and the camaraderie was much stronger because of how the site worked and stories were shared, but that need to connect with those who understand never goes as newly diagnosed people come along, 

Also it would help to know the type of NHL now you are starting to get used to the site.

John 

Hello John /Mike and all. Back to no sleep last night but once again I thank you all for your replies.

Felt anxious this morning, probably due to lack of sleep and very clammy all night and this AM.

John I was diagnosed with high grade NHL, not sure the difference too much between High and

low grade, did not take too much on board when told by Specialist, (shellshocked).

Only know High grade is aggressive.

Between the RCHOP Chemo I also have to have either 3 x 5 days stay in hospital For METHOTREXATE.

Through drip I believe or 6 Lumberpunch  injections ( same drug ) in Outpatients. Any advice anyone on

these options ( experiences please) followed by radiotherapy. that's about as much as I know at this

stage. any help or advice appreciated.

Colin.

Hi Colin, the common one is DLBC (diffused large B cell) and the other sub type is mediastinal DLBC, but with that one I would not expect the methotrexate, other types are Mantle Cell and Burkitt's and these days they normally receive a different type of chemo.

As for the methotrexate we have had a few, some still post, who have had this and some had it as inpatients due to how they reacted and others have had it as a day patient and the key thing is when its been given you remain lying down for between and hour or two at least. 

Have they said which part of the body they are going to give radiotherapy to?

The is a lot to take in especially when first diagnosed, plus a lot depends on how much you want to know, so chat to your team to ask the questions you need to to help make decisions, so ask if one option is better than the other for the methotrexate and do they think if one is better than the other. The drip may be better as it saves the injection into the spine and if you have strong bones then it can be a challenge sometimes. 

hope this helps

John 

Hi John thanks for your reply. Do not know which type, do not recall being told and only seen

the specialist once to date. have an appointment next week so will ask or be told?

Did not get the impression when told of options for Methotrexate that if I go for the spine

option, that I would lie flat for an hour or two but I would get up and go straight away.

More uncertainty.

Thanks again John. Colin.

Hi,

My latest update was Monday 1st April, I ow have a cancer caused by all the radiotherapy!? Not NHL.

I have put in a formal complaint.

I go again to haematologist this Monday for update.

I do not know what to believe.

Will update soon.

scilly

Hi given all the hassle you have had and misinformation, have you thought about a second opinion from one of the top hospitals, I know that may bring more angst but you do need some confidence moving forward as you deal with what's next.

John 

Hi,   John is giving you great advice.

Get a second opinion from a top specialist in a top hospital- that is the smart way to go,

Best to go to the best and to know the truth, then you can make an informed decision. 

It is your life and you deserve the best information and the best outcome.

Millie

Hello Scilly. I do not know if you have read any of my post's to John and Mike (the Highlander)

If you have, you will know that I am new to both this site and this awful disease. I must say that

Both John and Mike's post's to me have been of great comfort, making it easier for me to discuss

issues. I would like to think that I have always had compassion for anyone suffering in any way,

long before I joined this awful club.

Reading your post, really choked me, for you scilly not myself.

I cannot give you any advice, I have none. but would certainly listen to John's advice.

the only thing I can tell you, is there is so much love out there for you. hold on to it.

Wishing you every thing good.

Colin.