Relapse of my splenic marginal zone lymphoma

Hi again Debbie Roxyrock and sorry to hear that you have relapsed again…. 

I can relate to navigating multiple relapses as I relapsed multiply times over my first 14 years with my first type of rare T-Cell NHL….. it was only when my second very rare type of aggressive T-Cell appeared that the aggressive treatment for both T-Cells between Oct 2013 to Oct 2015 put a stop to my relapses.

My immune system was severely compromised for 4 years from Oct 2013 with the following 7 years up until now having a reduced immune system but I learned to live with this and I have been living a normal active life.

I have not had this type of treatment but let’s see if any group members have had this type of treatments.

I also volunteer with Lymphoma Action the UKs main Lymphoma charity and I have talked with a good number of folks in their various Support Platforms with the exact same type of NHL having navigated the same journey you are on…… if you are in the UK you may want to check this out.

Hi Debbie

so sorry it’s returned. I’ve been on Btk inhibitors for about 18 months now and they are working along with the usual cocktail of antibiotics etc. I know I’ve spoken to you before. Not sure if I’ve mentioned the drug Azithromycin. I take it three times a week and it wards off infections. Might be worth mentioning it to your Consultant. Here if you need to ask any questions. Regards.

Hi Cattie

So good to hear from you and yes we have spoken a few times before.

Thank you for the information its great to hear from someone having a good results from this line of treatment 

I'm now getting very uncomfortable with it filling the abdomen so I'm hoping I can get to see the Consultant  very soon in clinic.

Kind regards 

Debbie x

Also forgot ask which BTK Inhibitors are you currently taking 

Debbie x

Hi 

it’s called Zanubrutinub. I take two tablets twice a day. No side effects at all. Much better than I’ve chemo. Regards 

Hi Cattie 

Got my scan back all the other organs seem to be ok just the spleen is now at 21cm. Bloods are all slightly down again.  I have an appointment in clinic Tuesday and they have also requested a CT scan to see how the lymphoma is doing.

I wanted to ask the BTK inhibitors you are taking how are your bloods? 

Kind regards 

Debbie x

Hi there

Only slightly down is good bearing in mind what you are going through right now. My bloods are generally good. I’d say more stable than before the inhibitors. So much so I wasn’t seeing Consultants for several months, just phone calls. I was only referred back becos my protein levels wudnt settle for a few months on the run.  I’ve always had anemia and always will have but they never seem to worry about it. Don’t forget it will be different for me as I had my spleen removed in 2014. I believe they try not to do that now. Mine filled my stomach and I cudnt eat so I don’t think they had much choice. 
Let me know how the appointment goes. Good luck xx