Monday 7 June 2010

if it's not one thing, it's another. sometimes both.

Right. Pay attention. Big news and all that. Game changer.

I've known some of this for a while, but didn't have the details, so I've kept quiet. Now I'm armed with a bit more information, I'm able to pass it on. All in glorious bullet points.
  • The spleen was removed and tested. Lymph nodes were also taken from my pancreas and other areas.
  • Tests reveal that all of the above test positive for Diffuse large B cell non-Hodgkin's Lymphoma
  • On going back to the original lymph node, taken from my underarm back in December, it was confirmed that this was definitely Hodgkins Lymphoma
  • I was therefore showing two types of Lymphoma at the same time (as we now know that spleen was Diffuse B cell Non-Hodgkin's Lymphoma at the same time that lymph node removed was showing Hodgkin's)
  • This is very rare ...
  • ... but it has been seen, that the cancer 'morphs' from Hodgkin's to Non-Hodkin's - we simply caught it in the middle of the transition back in December (don't ask me to get any more technical that this)
  • To sum up this part: I no longer have Hodgkins Lymphoma, I have Diffuse large B-Cell Non-Hodgkin's Lymphoma (which I shall call NHL from now on)
  • I am a very special boy, huh?

Breath ....

  • New cancer = new treatment.
  • Chemo will no longer be the dreaded 'AVBD', but something called 'R-Chop'
  • It's not supposed to be as 'heavy' as my previous AVDB treatment - side effects are less intense
  • I start my first session on Thursday the 10th June. A few days.
  • Each cycle is three weeks
  • Unlike AVBD there is no 'A' and 'B' treatment. Therefore, each 'cycle' really is one chemo session.
  • I am booked for 4 cycles before another full scan (ie: 4 x 3 weeks = 12 weeks)
  • I am limited by the amount of this chemo I am allowed to take, as one of the drugs is basically the same as in AVBD and each treatment raises the dangers of a heart problem. My consultant seems confident than I do have one, despite my protests.

Breath ...

  • I am currently anaemic
  • I currently have a large amount of blood platelets - I am at risk of deep vein thrombosis
  • I will be expected to self-inject the 'white blood cell' boosters into my stomach, 5 days after chemo (for 3 days)
  • I am at high risk from infection after chemo - more so now I no longer have a spleen.
  • If I get a temperature of 38+, I must get to Emergency asap.
  • It was drummed into me, that I am, apparently, 'very sick'... 
  • ... my lymphoma is making me ill, tired etc / not the operation after-effects
  • "Have you got any fucking good news?", I did enquire

Breath ...

  • Had I come in showing 'just' this type of B cell NHL, then my 'prognosis' would be very, very good. Around 90% +
  • However, as I have this rare morph and type, then sadly, we are looking add slashing those odds down to about 60%.
  • Either the Lymphoma will not react to the R-Chop treatment (unlikely, as it did respond partially to the AVBD) ...
  • ... or 'relapse' starts to occur. The consultant was reluctant to talk about that. 
  • "So that'll be a 'No', then", I concluded.

And exhale ... you did well to stick it this far.

You're up to date ... I don't have anything to add. What is there to say?

Onwards, onwards .... Once more into the breach, dear friends, once more ... 

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