Hi everyone,
I have Follicular Lymphoma, diagnosed, December 2015 and had I underwent O+CVP treatment in over 3 years ending in March 2020. I've had no further growths that I'm aware off, however I do suffer a lot from Flu like symptoms on an ongoing basis. Take yesterday as a typical example, started the day just find, went about my work, then about 2pm my throat suddenly started to ache, which progressed to being difficult to swallow. At the same time I started to feel cold and as the afternoon wore on, I found myself unable to get warm, despite the heating being on and being wrapped in several layers. I had cold sweats and the shivers and by 6pm I was in bed, with feet that felt like blocks of ice despite other parts of my body feeling hot. This happens quite a lot since my treatment finished and was also an affect during treatment.
Can follicular lymphoma cause these effects? I know this is a random question, but searching on doctor google just gives side affects for the treatment, but my treatment finished 3 years ago, next week.
thanks
P.
Hi Phocused I see that you have been using other areas of the community before but it looks like this is your first post in the FL group so welcome. I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma but I was diagnosed way back in 1999 at 43 with another type of incurable Low-grade non-Hodgkin lymphoma, although my type is rare, it is treatable just like your FL........ I eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ and journey is different I do appreciate the challenges rather well..... especially the post treatment 'left overs' as I call them or officially seen as Late effects of lymphoma treatment
My consultant told me that living with an incurable Low Grade Lymphoma means that my immune system was always going to busy looking out for and dealing with my Lymphoma...... even when I am in remission. So this resulted in other 'normal life' bugs and infections that the immune system in a healthy person with no Lymphoma sneaking through. So our weak (distracted) immune system can overlook things resulting in just what you are experiencing.
I am 7.5 years out from my last treatment (see my story below) and still have to deal with infections and bugs mostly during the winter. It is all about learning to live with this and trying your best to keep healthy, eat well, keep well hydrated and if you have not done this, ask your clinical team about Vitamins.... I get these on prescription.
I also have a set of emergency antibiotics in the house I can take if there is signs of an infection developing. Up until I had my heart attack last April I was also on a regular anti-viral but had to stop them to allow my heart meds to be increased.
I will say that some of the symptoms you are describing are for me...... the first signs of me developing an infection so i would always check my temperature, sats and BP just to ensure that I am not missing anything and if these are ok I ride out the bump.
Always around to chat
This now make more sense and it's good to hear from you and keep searching for answers for the post treatment 'leftovers'.
As I also have Asbestosis I have access to my great Respiratory Consultant and he was great following my second Stem Cell Transplant when my sats were low so we did a few tests and instigated some breathing exercises that have helped a lot.
I take Adcal-D3 750mg/200iv everyday and have my bloods done once a year so any shortfalls that are identified and can be rectified through diet or medication but on the whole the Adcal is the main tool along with a health balanced diet.
Stay safe and well.
