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