CLL and complications

[Tonnross]

hi all its been an age since i was on this site. Recap, I was found to have Cll in 2012. Its been a tough road but for myself and due to a weak immune system I have on going issues with getting Sepsis attacks. They have put me in hospitals many times. I have a great consultant, presently I take c--trimoxazole 960 mg daily and Doxycycline. I am at the stage i can know when a sepsis attack is coming on. Over the past 2 months iam constantly cold and my temp is on average 35.9c. Mentally iam at an all time low .

[lankisterguy Volunteer]

Hi Tonnross,

We are sorry to hear about your troubles with repeated infections.

I assume your consultant is watching your ANC / Neut# and providing supportive therapy.

Has your consultant ever considered using IVIG infusions?

immunodeficiencyuk.org/stat...

immunodeficiencyuk.org/what...

gosh.nhs.uk/conditions-and-...

Len

[Tonnross in reply to lankisterguy]

well the crazy part is my cll is classed secondary to the sepsis . The continued sepsis attacks are really taking there toll, in general i feel real bad most days. Plus teh meds being antibiotics are flusing the gram negs out but also the gram pos. Vicious cycle

[AussieNeil Partner Administrator in reply to Tonnross]

I agree it's crazy that CLL is classed as secondary, because it's most likely the underlying cause of your repeated sepsis infections.

Len asked whether you were receiving IVIG? That or subcutaneous IgG can be life changing/saving in protecting you from the bacterial infections that cause sepsis.

Has your specialist verified that you have a low enough IgG immunoglobulin level to qualify? Frequent sepsis infections certainly qualifies you in that aspect of meeting requirements for regular infusions.

Neil

[Tonnross in reply to AussieNeil]

2012 i got told that i had cll, no treatment as such but the sepsis is really pissing me off. As to teh things you guys are telling me i have never heard of them but I will be asking about this. thanks all . The mental impact of all this is a new issue for myself also.

[AussieNeil Partner Administrator in reply to Tonnross]

You need to have an IgG count below 4.0 to qualify in the UK. If you qualify, see if you can be trained to self administer subcutaneous IgG weekly. You do this at home and it keeps your antibody based immunity at a more even level.

[Indie1234 in reply to AussieNeil]

Hi Neil, what’s the base line for IgG in Aust? To qualify for IVIG.

Cheers,

Indie

[AussieNeil Partner Administrator in reply to Indie1234]

It also needs to be under 4.0, along with recent severe bacteria infections.

[Indie1234 in reply to AussieNeil]

Thanks Neil.

[craterlake in reply to AussieNeil]

Good morning Neal , i have read a few times on the forum about people getting sepsis because of infections but they never say what kind of infections .. since starting the gazyva infusions a couple of months ago i am getting cellulitis on my feet again . so far i have been applying a triple antibiotic cream on them and it seems to be keeping it from getting worse ... later this month i will hopefully start venetoclax . do you think my immune system will improve with the v or get worse ?? thanks again for all your wonderful input to all of us . blessings , james

[AussieNeil Partner Administrator in reply to craterlake]

Hi James,

While we are all different, there are warning signs, such as whether cytopenias, particularly neutropenia, were factors in your need to start reatment and whether you have needed G-CSF shots to support you through therapy, along with trends in your neutrophils, that could flag the need for a higher awareness that your immune system may be worsening while on venetoclax. If your IgG is low, that increases your risk of infections and if yourvIgA is very low, that might put you at a higher risk of respiratory, gut, UTI and skin infections.

Your immune system should recover once you stop venetoclax. Just remember that you are unlikely to develop antibodies in response to vaccinations or illness for at least a year after your last Gazyva infusion.

Neil

[craterlake in reply to AussieNeil]

o.k. thanks Neil . very helpful info .. hope you are doing well and enjoying the spring time ... snow coming our way on thursday , at least i don't have raynauds anymore .😊

[Newdawn Administrator]

I’ve had sepsis twice as the result of infections. As a result I now monitor carefully for infection and am very aware of any adverse changes. As a result I was given monthly IVIG infusions and it helped enormously. They will no longer fund them however. Whilst pretty low, my immunoglobulins are now more stable so I’m not complaining…for now. As Len and Neil has said, I think you need to discuss this with your specialist. In your situation I’d also be wanting to be seen by an immunologist. Sepsis is an extreme reaction to infection and shouldn’t automatically be expected as it’s potentially very dangerous. You need investigations as to why your immune system is reacting in this extreme way.

Best wishes,

Newdawn

[IRN83]

hang in there. I was diagnosed with CLL in 2008. I’m in my fifth chemo season. I only get two years between chemo treatments. I’ve had FCR, BR, Ibrutnib and Venetoclax and Gazyva (the latter twice now). I was in remission only once and it didn’t last 2 years. I’ve had sepsis three times. Pneumonia so many times I can’t count it. Ibrutnib landed me in the hospital with a severe allergic reaction to it but it was also a miracle in that while I was in the hospital they discovered kidney cancer. The first treatment of Venetoclax landed me in the hospital with sepsis and severe pneumonia. They removed 1.8 liters of fluid from my chest cavity in that hospital visit. I’ve spent 20 days in the hospital this year. My WBC. ANC and platelets have been near zero most of this year. But regardless, I have been able to work full time and go camping every month. I don’t let it get me down. Nothing like a good attitude. I don’t worry about things I have no control over.

I hope things turn around for you soon and you can find something you enjoy doing and go do it.

Best wishes.Terry

[Tonnross in reply to IRN83]

terry, when i hear of issues like you have been through it makes me wonder why I even worry about my condition as its nothing like many of you guys. But i do take that most of you are so positive about the situation, I just cant get to the level of understanding many of you are at, I just feel like a ticking time bomb. regards

[AnneHill in reply to Tonnross]

You are certainly not making too much of your situation. I think you need a serious discussion with your consultant. Cll is your main disease. You wouldnt keep having sepsis if your immune system was working properly. Do you know what your blood numbers are? Do you need treatment?

I have ivig and its protecting me. I presume you are being treated by a haematologist.

Are you happy with the hospital you go to? Anne uk

[IRN83 in reply to Tonnross]

I think we all have our moments of doubt and fear. I certainly did years ago. I guess in time we either choose to move on and enjoy life or continue in fear and doubt. I hope you can get some excellent medical care that brings hope to your soul.

[AnneHill in reply to IRN83]

You make me feel lucky because I have responded to treatment really well. I have other medical issues but fatigue is my most debilitating problem. I dont know how you cope, Anne uk

[craterlake in reply to IRN83]

Hi Terry , you are an inspiration to us all .keep looking up and moving forward . May God continue to bless you . james

[mnmnewtons]

I'm 75 and was CLL diagnosed 7 years ago with deletion 17p, TP53 mutated, unmutated IGHV and complex karyotype. Last winter was a winter from hell. TLS from Venetoclax required hospitalization where in an overcrowded emergency room, I fell and hit my head. I experienced a psychotic like episode exhibiting paranoia and later, unremitting pain in several areas of my body, which was all too real. Oxycontin and morphine had little effect. After discharge my pain returned and I went to another emergency room, received IV morphine and was discharged. Within a couple of days I became feverish with sweating and chills, readmitted to the hospital and was diagnosed with Klebsiella sepsis. My ejection fraction plummeted to 30% and my legs swelled to 3 times their size. I was immobile. A month after recovery my right knee became seriously swollen and was drained only to swell again. Another trip to the emergency room resulted in knee surgery to fight probable infection. Discharged after 4 days I could barely get around with a walker. My regular CLL treatment during all this was altered significantly with several blood and platelet infusions, steroids and later very low doses of Acalabrutinib and later Venetoclax. All that time my doctors were right there monitoring, evaluating, explaining and treating. The nurses and other staff helped immeasurably and my wife was a right beside me (except in the ICU).

Seven months later, yesterday, I hit some easy tennis balls on court without falling down.

The responses of support, advice and encouragement you receive on this site is incredible. I can only add that we are never alone in this affliction and we always have hope.

[Tonnross in reply to mnmnewtons]

well i hope all goes good for you. When I hear of what many of you people have been through, I seriously need look at what I have said as its nothing compared to the issues faced buy you guys collectively. I wish all well good luck on your journey and fight. regrds

[mnmnewtons in reply to Tonnross]

I told my recent story as a background for the real message: there is help here and hope in our hearts. You are not alone.