Hi LLS CML people,
Just a quick note to introduce myself after a couple of years of lurking on this forum off and on. I am a man in my mid-thirties. I have had CML for 2 and a half years now. Currently PCRU, have been for the last year. On dasatanib as I had additional mutations (trisomy 8 and an additional BCR-ABL). In my country I think the standard approach is to start on Gleivic: based on what I read about side-effects I am very grateful that my excellent haematologist put me straight on dasatinib.
When I was diagnosed I was seriously ill for about 2 months including a 4 day stay in hospital, having possibly got some fever or infection that my body couldn't deal with. Went from initial phone call from GP to hospital ER next morning, bone marrow biopsy by lunch, straight on the hydroxy-urea and formally diagnosed within a couple of weeks. This rapid journey was made more harrowing by my partner's initial Google searches which included some out-of-date material and led us to suspect blast-crisis phase and thus dramatically worse outcomes. When she found LLS and particularly Trey's stuff it really helped make sense of very complex test results and to go from extreme worry to a more realistic place. One of the reasons I am writing is just to thank Trey for his work, it is much appreciated!
When I was diagnosed I chose to let her read the studies and browse the web while I just waited for the pills to either work or not work... to some extent I am like that still, I am religious about taking my meds but other than taking vitamin C at the same time and avoiding things that might mess them up (grapefruit or whatever) I am fairly passive/ fatalistic. I mainly enjoy reading forums to share other peoples issues with TKI side-effects and how they cope with the psychological aspects of having cancer.
I recently completed my post graduate qualification, a very tricky task while undergoing treatment: main challenges were tiredness, low mood and "energy", poor quality sleep and "brain fog" plus a period of horrendous mouth ulcers early on. My bloods are now pretty good, with all markers, liver function etc. in normal ranges. Am now working full-time but often find myself tired and struggling to maintain concentration on complex topics. My long term hope is to successfully go off the meds after say 5 years PCRU. Might even try going off sooner but my partner tells me that odds of staying off are increased for people who have been on TKIs longer so that has to be weighed up.
Naturally I am very grateful to be living in this age and to have a type of cancer which for which targeted "cures" are possible, I am well aware that I would be long dead or destroyed by a bone marrow transplant if this had happened 20 years ago. However, now that smoke has cleared from study and severe illness I am doing the frustrating work of trying to figure out if I can handle working full-time long term, learning to say no to things and to prioritise, and making decisions about things like having kids. I do not socialise with other leukaemia sufferers (there is one similar person in my neck of the woods but after an initial contact I decided that we didn't have much in common - I suspect he felt the same too) so sometimes I feel a little isolated, have many friends but sometimes it feels like a bit of a "bummer" to be complaining about invisible symptoms... I am also aware that many symptoms could have other causes (like getting older!)
Things I have picked up from the forums include taking magnesium for brain fog plus focusing on getting sleep/rest. I am also trying to get seen by a shrink to maybe see if some type of ADHD med might help (never had anything like this before).
Probably obvious from my spelling but I am not American, my sympathies for all the dramas and additional challenges that American CML sufferers have to go through with co-payments/Medicare/insurance etc. Sounds horrendous.
Have gained a lot from being a lurker and from my partners lurking on this forum so thanks LLS CML peeps and Trey in particular!
Leuk
