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Cancer update Jan 2022

Follicular Lymphoma

My PET scan results are back

I have just had a telephone consultation with my haematologist to discuss the results of my PET scan last week and my treatment going forward.

I have Follicular Lymphoma, the sub type is Non Hodgkins Lymphoma, this is a blood cancer it’s currently incurable but it is treatable. I was first diagnosed in Dec 2013 and this update is part of my journey along this path.

Mixed news

In comparison to my last scan from Sept 2021 the lymph nodes shown in that one are not as vivid and are slightly reduced in size. ( the brightness of the nodes of the scan are what they judge them by) that’s the good news, it means the current chemotherapy I am on is having an effect. The “bad” news is that there is also some progression of the disease in other nodes, but it’s not as bad as it appears to be, this progression is compared to the Sept 21 scan, we already knew something knew was happening because of the pain and the enlargement of my spleen as well as the “night sweats” retuning with a vengeance. These changes were why they started me back on treatment, we have no scan from the start of treatment (Jan 1st 2022) to the scan last week for comparison. My spleen is enlarged at 15cm (11.5cm is considered normal for my age) and my liver is also slightly enlarged, the cancer however hasn’t metastasised and is still contained within my lymphatic system.

Going forward

I am continue on the lenalidomide & rituximab regimen for another 3 months with a contrast scan in 4 weeks time to check progression.

Steroids

I was put on 30mg daily steroids for 4 weeks on Jan 2nd, this is a high dose and quite a lengthy period, they however have worked, the swelling on spleen although still present is reduced as is the pain and I actually feel so much better in myself, brighter and wanting to be more active, everyone who knows me has seen what a massive difference they have made to me, I really feel and act like my old self. This however is a false sense of security and it’s the drugs making me feel this way and if I actually tried to be superman I would end up doing myself some serious harm, so of course I am being my usual very cautious self.

Taking advantage

That said, I am going to take advantage of one of the effects of the steroids whilst I can, they really are a miracle drug and to say they make me feel fucking brilliant is an understatement and as well as that they make me feel very focused and that is the side effect I am going to take advantage of whilst I can.

I have had a few projects on the back burner because I was feeling like shit and I have been getting on with at a terrific rate with more to come, they aren’t physical as much so I am not actually exerting myself any more, just being more focused and being able to concentrate solely on what I need to do.

This however won’t last too long, I have just another week of 30mg daily doses then I have to step down off of them at the rate of 5mg /week so just another 7 weeks of taking advantage of them I guess.

Maybe not, maybe by then the chemo will have has some positive results, we shall see but until then I shall take advantage of them.

Overall?

Mixed, but positive, given the fact that I am still here, still alive kicking, fighting and the medics are still exploring and are confident about treatment options to control this disease, yeah, overall this all very good indeed.


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