Hi everyone. I was given a diagnosis of "thyroid lymphoma" since my symptoms began with the sudden appearance of lumps around my thyroid and a corresponding impact on my breathing and eating. NHL was also mentioned. It took a while before the term DLBCL started to appear on my hospital letters etc, but I'm now learning to look out for this term as well as the earlier ones! Anyway my treatment is R-CHOP and I had my first session 11 days ago. My lumps started to shrink quite noticeably, although I have somehow felt more physically aware of what remains of the larger one, and my voice has become more hoarse. My side effects seem to have been minor so far. My sense of taste seemed to disappear almost immediately; I was still on the Rituximab when they brought me a sandwich which I was unable to taste at all; when I got home even a glass of water seemed heavy and somehow stagnant. After a week or so some taste sensation has started to come back, especially for sweet and dairy items, but there is some way to go! I feel my appetite is reduced, and that I soon feel full, but since I needed to lose a little weight anyway I don't see that as a bad thing! Over the last few days I have become breathless more easily even though my throat doesn't feel obstructed; this feels a concern although not a severe/red just yet; I hope to keep going until my next consultation in two days' time. I get some random stiffness in joints, especially along my back, which doesn't match any of the effects they warned me of. But considering all the possible side effects and levels of seriousness associated with them, I feel I've been quite fortunate so far, and that being on chemo has been manageable. I hope this sounds reassuring to anyone about to undergo the same treatment.
Hi again bendorain and good that you have a clear diagnosis now and treatment has started.
Although DLBCL is a High Grade NHL it is very treatable and indeed curable. R-CHOP is one of the main treatments used, it's been used for years with great results and good to hear you are felling the difference I had a big brother of R-CHOP (R-EPOCH) so had all these drugs + another.
DLBCL Is one of the most common types of NHL so this brings the advantage that there are more proven treatments available.
The taste thing is normal and for some people they see it as a good chance to try foods that they had never tried before. But it will pass as the treatment works it's way through and out of your body. Aiming to drink a good 2 Litres of water every day can help toward the taste thing but more importantly protecting your kidneys as your body processes the chemo.
It’s like sucking on an old penny - it's not great. Eating fresh pineapple helped me, others say freezing small chunks of pineapple and sucking on them helped and I always had a pack of boiled sweets like Werther's Werther's at hand. Strong flavoured foods help - some share by having curry....... I could not face them.
As for eating I stuck to a grazing diet and never sat down to a normal sized portion of food, just little and often.
Do report the breathlessness, this can be down to the chemo reducing your Haemoglobin and Red Blood Count so get this checked out.
Stiff joints are also a normal thing as the chemo does effect your muscle tissue resulting in muscle wastage and the less you do the more aches and pains you will get so some simple activity will help this.
You are doing great.
Good morning bendorain, good to hear that your breathing improved and that you have been able to get things in place for a full review tomorrow. This along with many aspects of the journey are things that you will learn to look out for in the future. If in any doubt you always call stuff in.
My Heamatology department just did the bloods on arrival at the clinic and all Heamatology bloods were prioritised in the lab with results often on my main records within the hours, or even quicker then straight into see my consultant.
All the best for tomorrow.
