Starting Treatment 27th December 2018

Hi Fred,

Glad to hear that your birthday is going well

Fingers crossed that the next set of news is good

Nicky

Hi all,

Well  I didn’t really get the news I wanted either. Most of the cancer is in remission but it would seem that there is a sneaky bugger somewhere in my abdomen that the chemo didn’t catch

The others are large but clear, however this one is showing unusual activity. 

I have had an immediate ultra sound today ( after receiving the results of my PET/CT scan ) but they can’t find it so am back seeing my consultant on Thursday to see what next steps are.

The scan has also shown up chronic sinusitis and infections/ abscesses under my 4 wisdom teeth so she wants those pulled into the bargain and an ENT appointment. Just as I thought I could plan my summer - lol. She can’t quite work out why I don’t seem to have any pain or symptoms to any of these problems though. I told her that I was just a tough English cookie who didn’t moan - lol ..........

Hopefully just a blip in the journey of life .............

Nicky 

Hope you can get it sorted nicky I'm having 3rd chemo treatment tomorrow  all seems to be going well 5 lumps external has disappeared so hopefully internal doing the same  I'm also feeling much better so onwards and upwards people all the best clecker 

Sorry to hear your news Nicky let's hope they can sort the sneaky bugger out for you

Ouch 4 wisdom teeth to be pulled one is bad enough

I'm still waiting for my CT/PET scan appointment, I rang yesterday and Addenbrooks hospital where I am having the scan are having problems getting the FDG (fluorodeoxyglucose) for the scan but I should hear this week

All this waiting is no good for me at best I am an impatient chap at worst I'm always in a hurry ;)

Be thinking of you Nicky and wishing all the best for you 

Hi Nicky, not what we wanted to hear but lets see what the tests show as it sounds like you have a few things going on so it could be anything or nothing, I would normally say discuss a biopsy if they think something is still going on but if the ultra sound does not show it it will be difficult for a surgeon to find it unless they did a CT guided biopsy. Did they discuss Deauville score as that can be an indicator if the disease is still active. 

Keep us updated as to how things go 

John 

Hello Nicky,

I'll be thinking of you on Thursday and am sure its one of those hiccups of life we all get. Good luck with the wisdom teeth as well.

Hi Nicky, that's a bummer. I too had an area in my small bowel that was growing rather than shrinking through chemo. I didn't want to waste time with a complicated biopsy and we agreed it had to go, and fast! Turned out it wasn't lymphoma (sort of knew that!) Or cancer! It was a mass of my own histiocytes and macrophages....usually present where there's inflammation as these cells hoover up dead or damaged tissue. Now waiting for next stage which is stem cell transplant. This disease just keeps on giving. I have never had any symptoms. 2 years and counting....(touching wood)

Fingers crossed for you

Regards, Lynda xx

Hi Nicky,

im sorry to hear that not everything has quite gone. Let’s hope they got that wrong, but if not, it’s good that the chemo got most of it and hopefully your consultant will have a good plan to get rid of that last bit once and for all.

let us know how it all goes and what your next steps are - we are all here for each other’s journeys.

regards

Sorry to hear there's still some work to do.  My  resistant hip bone that may need 2 more treatments at the end of the 6 treatment course. But I imagine they'd want to be sure it was definitely lymphoma.

The difficulty of visualisation of small areas of disease is definitely one for CT type scans.  I had my bone biopsy under the scanner - a bit of a faff because the team had to keep retreating from the radiation, but apart from that, it made it accurate.  I don't see why abdomens are less easy to access than bones, but I hadn't started any treatment at that point.  I am sorry if it means more treatment just as you get to the end of the course!

I have read that we're more vulnerable to infections on the B-R treatment than other regimes, but the sinusitus and dental abcesses are a bummer.  I had 3 wizzies taken out at once under local, by a nervous student dentist, but it honestly wasn't sore.  I'm sure I had antibiotics afterwards even then, plus chlorhexidine mouthwashes. I just looked a bit bruised.

It's amazing what we put up with when we tackle this disease!   Sometimes it feels like boiling a frog...

Hope you get some helpful news on Thursday.  Holidays are vital for teachers.

C

So sorry you didn't get an "all clear".  I hope it is nothing. These results that suggest there might still be a bit more, how frustrating!  Hopefully it is nothing.  Hang in there. 

Wayne