I’ve been diagnosed with LGLL and am undergoing treatment with methotrexate and weekly injections to maintain my immune system (G-CSF) and to create artificial haemoglobin (EPO). I have blood transfusions as necessary. I’ve taken quite a time to get used to methotrexate and wonder whether anyone can offer advice and guidance. On a good day, I feel tired and on a bad day, I feel shattered.
Hi and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear that you have been diagnosed with LGLL.
I am Mike Thehighlander and I help out on the Community and I will do my best to direct you to the best place for you to find the support and the help you need. On my long journey I found the best way to navigate the various challenges that a cancer diagnosis brings was by talking with people who are on the same journey.
I was diagnosed with a rare type of Non Hodgkin's Lymphoma 20 years ago so do understand the rollercoaster you are on. The side effects you are having are rather normal for a good number but try to drink lots of water to flush the toxins from your body and protect your kidneys and keep some exercise going as this will help over come some of your fatigue.
I have had lots of G-CSF injections over the years and they are a pain in many ways.
We don't have an actual Forum for your condition as it is rare but we do have a General Leukaemia Forum (LINK) where you may be able to connect with folks who understand the journey you are on. This Forum can be slow but put up a post and see what happens.
We also have various other specific Leukaemia Forums so follow this LINK and have a look for them.
Methotrexate is used a lot in Non Hodgkin's Lymphoma Treatments so you could have a look in at these Forums.
Just join the group(s) and hit the 'Start a Discussion' tab and introduce yourself to the group and remember to go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.
You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be helpful as you can talk to a friendly person that can help in lots of ways.
We also have pour ‘Ask an Expert’ section but please allow a few days to get an reply.
I see you have done your profile - this helps no end.
I will keep an eye open for you in the other forums.
