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
Written by
Dell49
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My goodness. Sounds like you have really gone through the ringer lately. I hope you get a good result from the new medication... sounds like FCR worked well for you at least for a while. Have they spoken about immunoglobulins with you? Some people really benefit from the infusions if their antibodies are low.... Sounds like you’ve had a lot of infections!
Thanks Adrian , the wisdom teeth where just unlucky due to direction they grew but everything else was bloody annoying. Consensus is that CLL is underlying cause so will trust team and crack on .
A really warm welcome to you Dell and I’m so glad that your missus, our very own Londongirl encouraged you to post. Please dont even think about reducing your posts but please restrict them to the community if you don’t want everyone on the net to know your business! 😉
I read your very interesting post with more ups and downs than a rollercoaster and thought, ‘welcome to my world!’ You’ve rallied and endured in the face of adversity, obviously with the strength of your wife behind you and the ‘girls’ who have clearly been her support network too.
I’ve had a taste of this dental link between very enlarged nodes and infections and interestingly also got a strange cut/sore on my lip that had my levels reaching for the stars! Fortunately I didn’t end up in hospital but for a few months it had my nerves jangling!
So glad you bravely got to your son’s wedding. I can see why nothing was going to make you miss it.
I hope the Ibrutinib starts to work it’s magic and you can start to see some health stability Dell. As for the leak in the roof...I remember getting up one Christmas morning just after my dad had died and the kitchen was awash from water running through the ceiling. The challenges of life that invade even when we’ve enough to contend with!
I have no words. You have been through the ringer and have shown incredible resilience and positivity! Attitude is so important and will help you get through challenges like the ones that you have already faced. I’ve been on Ibrutinib for a little over three weeks and it’s been great for me so far. Hoping that it will help you turn the corner.
Well done Del.. Good to offload.. What a time.. Know we are rooting for you.. Huge hugs and praying the ibruitinib does its job. Keep us all posted... Xxxxx
Hi Beth, I don’t know what Maria and I would have done without you, Sue and the mad one 😂 and this entire group actually, all such great caring people, makes the world seem sane again. Love to you and I must set up a whatsapp group with you me and Nic if only to annoy Maria 😜
Dell, I haven't read the other posts yet, but I want to say hurrah to you for your toughness and ability to see the ridiculous side of the onslaught when you returned from your son's Brazil wedding!
Sometimes it is: "WHAT CAN HAPPEN NEXT?" Glad to hear the trip was a winner. Best of luck with your coming treatment.
Thank you , it was such an experience it would have been devastating to miss. A good friend who faces her own much more aggressive battle told me cancer is a bully and the only way is to bully back and that lady is an inspiration to me as is everyone one on here, a genuine place of love and friendship.
It is my go to place after the horrible, no good, horrid news I watch every AM--glad you have joined in with Londongirl. I can see the British brand of humor with a good sense of sensible will be keeping us entertained!
Welcome Dell49! Attitude is everything and your attitude is one of your greatest assets! I'm so glad you were able to go to the wedding and have a fabulous time - due to no lack of determination on your part!
You have had quite a challenging journey so far - here's wishing ibrutinib helps turn that corner you are looking for!
What a fab post. It's about time you off loaded and what a great way to do it! As I have told you soooo many times, I couldn't have got through it without everyone's support on here!
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