Hi I'm new to this group. My name is Ethel 2. I was diagnosed with SLL just over two years ago and started treatment at the end of October. It was quite scary as I had a bad reaction to the chemo and had to stay in hospital for five days. I've now started my second round with weekly Obinutazumab (IV infusion) and daily Venetaclax (oral). I have weekly blood tests and once weekly stays on the ward. I've had a lot of pain in my joints and my appetite is poor at times. I'm trying to stay positive but feel quite low at times as I can't spend time with my grand children as I'm worried they may pass an infection on to me. My two eldest grand daughters are at primary school and there has been a lot of COVID in the school. Is there any way of staying safe but being able to spend time with them? Many thanks Ethel 2
Hi and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our various blood cancer groups.
I don’t have SLL but was diagnosed in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a and although my blood cancer ‘type’ is different I have experienced ‘the’ treatment journey but not necessarily the exact same drug mix.
You may find this information about Small Lymphocytic Lymphoma helpful. This information is taken from the Lymphoma Action web site. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good information, videos and run regular regional online Lymphoma support groups and indeed a very great Lymphoma Buddy Service...... so worth looking through their information.
Any type of infection can be a problem (not just cover) and it is a balance between keeping safe but living as normal a life as posable.... our mental well-being is very important.
Covid has obviously brought a further challenge but we just have to keep following all the guidance and look for the wider vaccination of the population to provide us more protection.
My journey had me go through two Allo (donor) Stem Cell Transplants (hit my community name for my story), we had 2 granddaughters at that time so we did have to be carful but still spent time with them. But if any of them had runny noses, coughs or a temperature we kept our distance. We always had the windows open even during the winter up in the Highlands just to get some fresh air circulation.
During these covid times our small select group of family (4 granddaughters now) and friends do regular Lateral Flow Tests just to make sure things are ok, follow good hygiene protocols, no visiting if they have any bugs showing, windows open etc....... and we have been fine...... and if in any doubt I ware a mask when they are in - simple.
You do what you feel comfortable with but it's important for your own wellbeing to see your family.
Pain in your joints may well relate to how active you are...... the less you do the more aches and pains will develop as your muscles start to waste away........ are you getting G-CSF injections into you tummy to post your immune system?....... these can cause bone and muscle pain.
A poor appetite can be a challenge, when I was at my worst I basically lived on scrambled egg for breakfast and regular small cups of good quality liquidised home made soups.
Happy to chat at any time ((hugs))
