Lymphoplasmacytic Lymphoma

Hi Carol, that’s great news. At least your protein levels are heading in the right direction. As we’ve learned everything takes time. When are your next tests? 

Hi again

Was due 27 December in a months time but leaving it for 2 months, so it will be late January when next lot of bloods due. That’ll do me. Fingers crossed for a good protein reduction. 

take care

Carol xx

Always a good sign when they leave it for 2 months. Mine is 2 months now too, next one 20th December 

xxx

Please let me know how you get on Cathy. Good luck .

Carol xx

Thank you. Will do xx

Hi Cathy. Attended hospital and the zanubrutinib really working. White cells normal and protein down to 9. I asked about remission and was told yes. Next appt in 3 months by phone. Just have to have blood test day before. Hope things are looking up for you too. 

Hi there, that’s fantastic news. The fact you haven’t got an appointment for three months is a really, really good sign. Well done you.

It’s not good news for me unfortunately. My white blood cells were up on at my appointment in December. They think the zanu has stopped working. I’m carrying on for now with the addition of steroids. They are looking at trial drugs again but it looks like I’m not eligible as my lymph nodes aren’t big enuf. I personally think they have given up on the zanu too quickly especially as I had a bit of an infection at the time and the white cells have come down at the last two appointments but they are the experts so we have to trust them. So disappointing and worrying 

xxx

Sorry to see this but keep your chin up it could be just a blip. Keep taking the tablets as they say. I still feel apprehensive still but I think it’s always on your mind isn’t it. I think are they sure it’s normal. Consultant did say she didn’t expect it to work as quick! She described it as putting into a deep sleep during one appointment. Think positive and I’m sure you’ll get the result you want. Take care xx

Mistisla xx

Hi again

i am trying to keep my chin up it’s just so disappointing when the zanu was working so well. Just have to take it on the chin and see wot they come up with next.

You keep up the good work.

xxx 

Hi Cathy. Hope you are feeling a lot more positive than last month and treatment is going in the right direction for you again. I’m feeling fine. Keep getting a fine rash but other than that I feel fine.

Keep your chin up. Speak again soon xx

Carol x