No test undertaken yet: I’ve had plenty of... - CLL Support

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No test undertaken yet

Sepsur
Sepsur

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

58 Replies
oldestnewest

Hang in there mate , easy said then done I know but you will turn the corner , how long have you been off the ibrutinib now ?

Stewie

Sepsur
Sepsur in reply to stewie

11 days which is approx how quickly ibrutinib worked its magic in first place

PaulaS
PaulaSVolunteer

Sorry to hear this, Sepsur. Early hours of the morning are always the worst for our thoughts to go to worst scenarios.

I hope today will bring some clarity and changes in the right direction..

Thinking of you,

Paula

Sepsur
Sepsur in reply to PaulaS

Thank you

You will sort this out like you have all the other ups and downs and difficulties you have faced, Sepsur, keep on keeping on 💪🏻.

Those midnight thoughts aren’t good, are they?

Cx

Sepsur
Sepsur in reply to chrisgrannyUK

Not at all

Sepsur what is the hematologist saying, suggesting about what's going on??

Sepsur
Sepsur in reply to Sushibruno

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...... 😊

Sushibruno
Sushibruno in reply to Sepsur

Im thinking about you and hope they get to what's going on asap. Hang in there we are all with you.

Sepsur
Sepsur in reply to Sushibruno

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

Sushibruno
Sushibruno in reply to Sepsur

Lots of luck and prayers going your way, Sepsur😊😊.

Sepsur
Sepsur in reply to Sushibruno

🥰

JigFettler
JigFettlerVolunteer

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!

Thinking of you

Jig

Sepsur
Sepsur in reply to JigFettler

Thank you Jig

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

Sepsur
Sepsur in reply to cajunjeff

I will - thanks Jeff

I’m sending you strength 💪

Sepsur
Sepsur in reply to Justasheet1

Thank you

Sorry for this tough time...

And hoping the Docs get on top of this infection and that you can return to IB and feel better !

You have so many people here who care and wish you good health!!

Sepsur
Sepsur in reply to 1ofakind

Thanks everyone - CT scan done - went for MRI but they can’t do it while I still have staples in my head

How's it going?

Sepsur
Sepsur in reply to Sushibruno

Very sore tonight 😀

Ferham
Ferham in reply to Sepsur

You are remarkable .

Sepsur
Sepsur in reply to Ferham

Thank you - just trying to get through to the other side of all this 😀

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!

Yes I can FaceTime which is helpful 🤕

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

Newdawn
NewdawnAdministrator in reply to Sepsur

That’s rotten for you! Sending huge best wishes and we are all thinking of you and hoping this is resolved soon.

Newdawn

Sepsur
Sepsur in reply to Newdawn

Thank you 😊

Mystic75
Mystic75 in reply to Sepsur

Miles, I'm so sorry you are going through this (and everything else!).

Do they have an estimate time they think the staples will be able to be removed?

Sepsur
Sepsur in reply to Mystic75

Wound viability (?) nurse said a week - docs said nonsense / someone is right 😳

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!!!!!!!!!

Mystic75
Mystic75 in reply to chuckh

Chuck,

Wishing you the very best and hope Venetoclax does its magic on you. Please keep us updated.

Big hug,

D.

chuckh
chuckh in reply to Mystic75

Much appreciated... but I was just feeling for Sepsur.. He is having a hella time of it.

Sepsur
Sepsur in reply to chuckh

That’s no fun man - best wishes

Rafe
Rafe in reply to chuckh

Best thoughts to you as well Chuck

Sorry Sepsur...you've had a lot of stress lately. I am thinking of you and hoping for some improvement soon.

Sepsur
Sepsur in reply to cyclist123

Thank you

Hope you get some answers soon, sending you best wishes

jenny uk.

Sepsur
Sepsur in reply to very

Thank you 😊

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.

🤞

Hope they manage to sort everything very soon. Take care.

Sepsur
Sepsur in reply to NooNoo14

Thank you

Sorry it’s being such a rough time. I hope it all gets sorted out and you recover quickly. Best

Sepsur
Sepsur in reply to Rafe

Thank you

Hoping for the best for you.

Sepsur
Sepsur in reply to ZippyZ

Thank you

Hello Sepsur

You have endured thus far and I send my blessings to you for a short journey to better health. Blessings.

Sepsur
Sepsur in reply to Big_Dee

Thank you - hey my bird boxes have new chicks - 8 wks on - was it humming birds ds you had?

Big_Dee
Big_Dee in reply to Sepsur

Hello Sepsur

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.

Sepsur
Sepsur in reply to Big_Dee

I remember the photo now. We have a few Robin boxes up but not takers this year. I’m sorry to hear about your chicks 🐣

Sepsur,

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,

JM

Sepsur
Sepsur in reply to Smakwater

Thank you - I should have been on venetoclax - lockdown messed it up 😳

Smakwater
Smakwater in reply to Sepsur

We need a stool to stand on, so that we can reach the Sword of Damocles to take it down!

Sepsur
Sepsur in reply to Smakwater

🤣🤣indeed

Those dark ours when we can’t sleep are the worst. My heart goes to you Sepsur.

Did your CT show infection in your lungs ?

Is cardiologist involved in your mystery situation Sepsur?

I hope they will sort it all out and get you on the road to recovery soon.

I am sending you a huge virtual 🤗 over the pond. Stay strong we are all supporting you Sepsur.

🤗🙏🏻😘

Dana

Sepsur
Sepsur in reply to studebaker

Thank you Dana, mobile heart monitor went back to other hospital. Def. infection on chest - bloody sore too. Just felt drained & poked & prodded & knackered 😬

studebaker
studebaker in reply to Sepsur

🤗🤗🤗🤗

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