This is my first actual post, so apologies for its length, but have responded to other post’s on here. I am one of those silent types you see mentioned, my wife , London girl on here finally got me to join and so glad I did.
About my CLL , diagnosed back in 01/15 , FCR on flair trial 11/16 for 6 rounds, CLL kicked into touch , all bloods down in normal range although platelets never managed to get to normal but this was consistent with FCR in some people. I also have an under active Thyroid
A few good months of health then what I can only describe as a bizarre period of my life came about starting in 09/17.
It started with a tooth ache which in turn caused nodes in neck to swell one side, not unusual for an infection so no drama or concerns. Tooth out but nodes stayed put. Was also then told wisdom teeth impacted and need another 4 extractions so yes another 4 teeth needed to come out and as we all know surgery is not a great option for our compromised immune system.
Platelets then began dropping but everything else bloods was fine. Lymph nodes in neck still swollen (think jabber the hut if you are a star wars nerd)
Week before first extraction a tiny cold sore on top lip appeared which in the space of 12 hours ballooned to scary proportions so straight to A&E, lot of tests and head scratching, they were not sure if it was an allergic or Immuno reaction but treated with antibiotics and steroids and healed in a week then had first 2 teeth out which went well. Platelets still going down but my CLL consultant thought all the teeth infections were clouding what was going on and should wait to settle down, then came the displaced knee cap which I knocked assembling a desk so that I could work from home more. Two weeks in a leg brace unable to bend at all, once again incredible swelling, now I am thinking this could be my reaction to any injury because of CLL.
Still pressed on with other 2 teeth extractions which went well.
This is now early January this year and decision is taken for me to start Ibrutinib but there is a catch, my son is due to get Married on the 23rd of February to his Brazilian girlfriend in Brazil and I am desperate to be there, my a platelets are at 60 so you can imagine my consultants concern so it’s decided to postpone Ibrutinib and manage me with steroids until I get back which to some may sound crazy but my father missed my wedding due to cancer (lung) and I never got over it so I was damn well not going to miss my sons wedding.
I had bloods tested right up to a couple of days before travel before I got go ahead ( it was that close) I traveled with a platelet count of 42. It was a fantastic time with the perfect wedding in Belo Horizonte and 5 days in Rio.
We returned to a burst water pipe in the loft, I just burst out laughing as I really couldn’t have cared less about material things anymore thats where I was as a person.
That was 12 days ago so where am I now you may ask.
Well caught a cold but didn’t feel that bad until Monday afternoon when got a small blister on bottom lip started running a high temperature of 39 on Monday evening, woke up Tuesday morning with massive bottom lip and trip to A&E where I was admitted to hospital for observation.
I start Ibrutinib today and hope that I am about to turn a corner and get back to some sort of normality if we can ever have such a thing.
I have obviously had some dark times but remain positive and have the most exceptional team behind me and have made some great friends on here as well
Nic, Beth and Sue who have been rocks and also my wife who is the strongest person I know.
I promise short and sweet post’s from now on but had a lot to get off my chest.
Love to everyone
CLL and Teeth Extractions
FCR versus Ibrutinib
Surviving Covid19
