Well, I'm back and focussed again. After the shock of the previous news, especially when my consultant had said there were plenty of back up plans, things are settling. I will not lose to this thing. It is not an option.
Feeling a bit crappy today and yesterday. Had a couple of monster temperatures which drifted down throughout the day. Trouble is it leaves you feeling really weak and rubbish. I can't hear properly out of either of my ears. The right one is sworse and just sounds like the sea, whereas the left one makes my voice sound likes its emanating from the middle of my head. Don't know if it is the cold I had taking longer to clear than I thought or the stupid lymphoma trying to add to my list of annoyances. It's a real pain in the bum. Anyone who speaks to me, gets me saying what, pardon, eh several times and anyone I talk to, I boom at. I can make my ears click by holding my nose and blowing but it hasn't yet popped back to normal (oh, please let it do that soon).
Big thanks and hugs out to everyone who has been sending me information and messages of support. Some people have asked for the full details of what I have, well, it is called:
Non-Hodgkins Lymphoma - Large B Cell Defuse primary mediastinal (THYMUS)
Kind of rolls of the tongue really!
The news so far: Tomorrow I will be going to Reading hospital to be measured up for some radiotheraphy which hopefully will shrink the sucked down. I've been told it could shrink from 0 to 80%, but at the least it should be held. Then there is sthe possibility of seeing another consultant for some RF ablation to kill off the new nasties that have moved into my organs without invite or contract. Hopefully that will reset the clock back a bit.
5 comments:
Keep fitting Rich,
bit of info Hailey used an experimental lung chemo which also worked on liver tumors. it battered the liver tumor really well, I'll try and find out what it was.
Keep battling.
Paul Mount
Good luck with the radiotherapy Richard. Now you’ll know what’s like to be a TV dinner.
Lee
Hi Ricardo
Good news to see you back on blog, that's the spirit! And good to hear you're feeling a little better today and also that Harry recovered from his 'little tumble', budding stunt man or what?!
Love to you all and every blessing
Peter <><
Chemo Man ..... tv dinner tut ut bad taste but had to have a little laugh when i relaided what you meant. Anway i suppose you have been thru it all so are better positioned than me.
Richard, Ricky, Ritchie , Ricardo, Rich or least favoutite name of all for a Richard is without doubt Dick.
No seriousley we used to have a next door neighbour in the seventies who was called Dick but i think dick was used less as a swear word ib those days. I suppose Rich (my favourite name for you) when you were called a dick at school you could just reply thats right thats me name son.LOL.
Anyway get on you Rich i luv your attitude mate ..... f******* get in there and have that stubborn "I will not let this f******* illness take me down without a fucking fight. I really am glad you have bounced back after the bad news as mate its never over and the more psoitive you are the more positive the reactions could be.
You have suffered mate and yet you still have a sense of humour.....whatta guy mate come on get back in that bocing ring and show you have plenyof fight and years in you. Go my son go !!
My wishes and prayers for a halt in this illness and a turnaround for you deserve it Rich boy!!!
Mark
Rich
I have spoken to my contacts that are developing the drug I mentioned to you (ofatumumab). It is a drug that is similar to Rituxan but is thought to have better activity in certain tumour types potentially including DLBCL. They have study centres for a study in DLBCL open in the UK. The bad news is that I am afraid they are not recruiting patients with primary mediastinal disease. However, they recommended you have the diagnosis clarified in case. You or your Dr should contact the study organiser in case there is something they can do.
They are recruiting patients at: Christie Hospital NHS Trust, Guys and St. Thomas Hospital, Leicester Royal Infirmary, Velindre Hospital Cardiff.
The contact for all UK sites is Charlotte Døssing +44 1438 342 432
I have done some searches on primary mediastinal DLBCL and unfortunately there are not many new studies ongoing in the UK as it is quite a rare subtype. I really think you should contact Charlotte. They have recently reported positive data from studies in other lymphoma types and it is worth checking it out.
Rich P
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