Hi.good to be back

[9876]

hi , I haven’t been on here for about 6 months: I have been in hospital for most of that time . I started getting headaches which were getting progressively worse in April and was admitted to UCLH haematology ward and started on treatment ibrutinib & Venetaclax the pain got so intense that I had a mini stroke , after a MRI they decided to operate and found a fungus eating into my brain ,although it is rare it can happen to us with a weakened immune system,I thought I had read and heard everything about this dreaded disease. I was very ill and wasn’t expected to make it but somehow managed to pull through but due to this I had another stroke while under anaesthetic which after a spell in a rehab unit finally coming out in October. I am now on just Venetaclax

[Newdawn Administrator]

Oh my goodness, you’ve had an absolutely dreadful time with a side effect I’ve never heard of before! I can only imagine what you and your loved ones have been through.

So glad to hear you’re back on the wellness track. Venetoclax is a very effective treatment indeed.

Take care and hope your rehabilitation progresses well…and your CLL behaves and never again produces these scary symptoms! 😳

Regards,

Newdawn

[mrsjsmith]

Goodness what a scary story, but so good that you have recovered, and lucky you were in a great hospital.

Stay safe and well now.

Colette

[Ghounds]

How terrifying, sending you best wishes for a complete recovery.

[Poodle2]

Julia, I cannot believe this! I'm so sorry to read what a horrendous experience you had. I was thinking about you the other day and wondered if you had already started with treatment. I'm so glad to read you seem to be out of the worst now and hope you can continue to recover. A fungus eating your brain - that sounds really just like out of a science fiction movie...anything can happen with CLL, right...so so happy that you are on the mend, please look after yourself. Do you know what the fungus was called? How does that happen? And how did they treat it? I'm intrigued but I will understand if you don't want to discuss it any further.

Sending you a big big hug 🫂

Petra xxx

[9876 in reply to Poodle2]

They couldn’t determine what the fungus was and said I could of inhaled it .???

[Poodle2 in reply to 9876]

It's just so unfair on you, everyone who has this dreaded disease. Everything around us is literally a potential killer. I'm so happy you pulled through xxx 🙏🏻🙏🏻🙏🏻

[studebaker]

This is unbelievable Julia, it must have been very stressful for you and yours

Never heard of complications like that and great for you to beat the odds and come out victorious 👏👏🤗

Dana

[Justasheet1]

Wow, what a tough time. I’m so glad that you fought hard and you’re back.

Jeff

[DoriZett]

Best wishes for a full recovery. You have been through an awful and unusual health trauma. Blessings to you and yours as you continue your healing path.

[kitchengardener2]

Oh goodness what a dreadful time you have had. Hopefully you will now continue your recovery. Stay safe and strong 🙏

[Fowey2009]

My goodness. I am so sorry to hear all that you have been through - with very best wishes for your continued recovery.

Beryl

[terryI_uk]

What an awful time you've had, glad you're on the mend and hope you continue to get better with rehab, God bless, Terry

[Pearlpink]

omg! What a terrible time you have had! So glad you are in the mend now! 🤗

[MickUK]

My word that sounds very scary, so I'm glad you seem to be on the mend. Best of luck!

[Wishing1202]

Thank you so much for sharing your experience. You have probably helped someone else down the road.

I'm glad all turned out well for you, and kudos to your doctors.

[Analeese]

My husband had CMML that turned into AML. He got a fungus that went to his lungs after he had chemo and continued to fill the lungs to the point that he could no longer get any oxygen. Not as lucky as you he ended up passing away. Thinking about you and praying that you recover from all that if you have been through.

[9876 in reply to Analeese]

So sorry to hear about your husband 😥

[JerrysGirl3 in reply to Analeese]

I'm sorry Analeese 😢

[Masgc]

Glad you're feeling better, sorry you had to go through that. My specialist put me on prophylactic Cresemba, an anti-fungal oral pill, for about the last 6 months of my Venetoclax. The Cresemba is fairly new and expensive but my insurance covered it. It also gave me diarrhea for several months - ugh - but preferable to months in hospital 😥 . Best wishes for a full recovery!

[9876 in reply to Masgc]

Cresemba is what I am now on ; the fungus is still there albeit only a small amount thankfully ; have been advised that I will be on them a long time

[noeagaman]

I am so sorry to hear about your experience, but also very glad that you are on the other side of it and recovering well. I had a fungus in one of my lungs a few years ago. Before they knew it was a fungus they tried four different antibiotics and none would cure it. They finally did a bronchoscopy and found what they thought was a yeast fungus. They treated it and increased my IVIG dosage.

Take care. Glad that you are on the mend.

Chris

[9876]

thank you for all your replies , I am thankful to still be here and posting on this forum ; also to inform all of you what can happen

[JerrysGirl3]

Wow. I am so sorry for what you have been through!! Sending hugs 🤗🤗😘

[Thursday45]

Just wishing you a good recovery. I never heard of anything like this before. Sending hugs.

[Stamphappy]

9876, I am so sorry and shocked to read what you have been through! How horrible and terrifying this experience must have been...Thank you for sharing your story with us. ❤️ Anything can happen with cll 😔. It will remind me to always mask working in the garden. I'm concerned about picking up something nasty in the soil. I even wash our little dog's feet after he's been outside. So glad you are on the mend. Biggest warmest germ free hugs 🫂.

[lexie]

Thank you for sharing your unique and disturbing experience. I think it is a great service to fellow CLL's to alert us to what is possible, especially when doctors draw a blank. So glad you found the culprit and are making progress!