I’ve had plenty of antibiotics & antivirals & blood tests but none of the big boy tests yet.
My swollen lymph’s have leapt back to pre treatment size & discomfort.
I also have a chest infection / it’s a strange one because I have the pain involved but non of the accompanying symptoms like runny nose, coughing or coughing up phlegm. I guess this is result of having no immune system?
I had to have a bit of a word with myself at 1am as I imagined the bad old days of this disease returning.
Ibrutinib had lulled us all into a false sense of security
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That I may (MAY) have had some sort of seizure, or my heart has become too slow??? They are just running tests to try and rule out some things etc etc - it may even be a viral infection - so...... 😊
Thank you - in fact there is some movement this morning apart from failing 5 times to get right quantity of blood from me. Will have CT Scan within the hour
Hi! Be brave, be strong. What ever flight you are on - you must be having some of the best pilots in the world driving!
I appreciate you sharing - it must be very hard when feeling so rubbish and worried. This bit of our journeys perhaps does not get shared as much as it might. Its hard to do, it is a reality.
I am privileged to be part of this Forum rooting for you!
Hang in there pal. Keep your chin up and keep us posted. I am sending positive waves now, not sure how long they will take to cross the pond but they are on the way. Jeff
I hope that the CT gives your doctors the information needed to start finding answers! Sending lots of positive thoughts from Southern California! Are caregivers still not allowed to be with patients? If so, I hope that you can at least FaceTime or something along those lines!
I’m in catch 22 - CT. has shown where the disease is upto in my lymph etc. But it doesn’t reveal why I fitted. CT scan of head done separately last week - today was neck, torso & abdomen.
MRI was going to be just of my head. To try and establish cause & hopefully rule out ibrutinib as the culprit. Wound not healed enough to remove staples - so in the interim my chest infection is becoming more painful & my lymph nodes feel like they took steroids yesterday - so uncomfortable
I have pneumonia 3 times while on ibrutinib... and right now genetic changes rendered it totally useless. Starting venetoclax tomorrow AM... but they are not hopeful about that helping, but it the last tool in the bucket they can use on me. I feel for ya. I know it is fixing to get nasty. 10 years with CLL has been a good run though. Perhaps we should learn to appreciate the time we have. As of today I have a new doctor... seems like he knows what he is doing and does not beat around the bush. Hope they find something that can help in your situation. I know those swollen gland blues ...gosh especially spleen.. It horrid. Best wishes!!!!!!!!!
I can but join the crowd and send some Pacific Ocean tinged healing wishes your way.
Can I ask - if you are feeling up to it - about your earlier post re that muscle spasm so severe it threw you against the wall and gave you a severe head injury (with staples!) Was that a spasm or since reclassified as a seizure?
Anyway I do hope it all becomes clearer with useful answers and effective treatments.
I did not have the hummingbirds, but had 3 robin chicks. Unfortunately two died in a tornado/straight-line wind event we had. I have another nest coming along though. I do however remember the hummingbird story and photo of hummingbird nest, neat.
Re: false sense of security - There has been so much forward momentum with treatment recently that we do sometimes overindulge in positivity. I will admit that I am one of the worst to slap the cat and say "Go Get Em Tiger". Yet, there is some benefit to coast in the hope of temporary relief.
I do get it though. The fact is CLL is not yet curable, and treatment in part reinstates watch and #$@T.
Slap The Cat
Covid also has added a challenge to access of resources, but, the resources are still there. Stay focused on the business of overcoming, self advocate, be an assertive influence with your doctor in determining solutions and obtaining curative process.
I hope that this is just a temporary setback from an underlying secondary influence, and that it will pass, rather than a resistance response. None the less, be thinking about the next move, possibly venetoclax?
As are all here, I am with great hope that you can overcome,
Thank you Dana, mobile heart monitor went back to other hospital. Def. infection on chest - bloody sore too. Just felt drained & poked & prodded & knackered 😬
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