Treatment and TLS and neutropenic sepsis

[puppy43]

Hi ,

happy Easter to the CLL community

Can anyone offer any advise on the chances of TLS and neutropenic sepsis

with V and O treatment?

Are they rare or common with this treatment and how serious can they be?

my consultant seems to think I am low risk for the TLS, but the sepsis seems to be

bigger issue for CLL patients

puppy43

[JigFettler Volunteer]

Both important questions. Two important issues.

In short, your risk of both or either TLS or Sepsis is low. The Haematology Team will guide you through.

TLS... you will be protected by the treatment initiation protocol.

Sepsis... depends if you become Neutropenic, or Lymphopenic. I got both with FCR.

Search the Forum. TLS 91 hits. Sepsis 222 hits.

Both these area are well trodden and you may well relax snd let your Heam Team do their stuff.

Good luck.

Jig

[puppy43 in reply to JigFettler]

Hi Jig,

Thanks so much for your reply and I will certainly search the forum as you suggest

As you mention they are both well trodden paths

best wishes

Puppy

[Poodle2]

TLS - if you drink as advised and take your allopurinol, with all the frequent monitoring - it isn't impossible to get it but I think it's quite unlikely - they are very good at looking for any clues and preventing it. I'm being treated at Barts in London, one of the biggest cancer hospitals in the UK and my consultant said she didn't actually remember once case of TLS - that did put my mind at ease. Sepsis - if you become neutropenic (about 50% of patients do) - then you have to be careful, you can get an infection and if neutropenic, sepsis can come on quite quickly. I have experienced it and currently severely neutropenic again and hoping my cold doesn't escalate into a sepsis. As long as you contact your team if you have a fever, even sepsis is easily treatable - as explained to me when I was hospitalised - you just have to act quickly.

A lot of CLL patients breeze through the treatment. I think a sepsis is a bigger risk than TLS as once you ramp up, the risk of TLS is almost gone I believe...but even with sepsis - if your neutrophils stay in a safe range and you e.g. do not have small kids or have to work - I think the risk is low - as you can manage your risks of getting infections.

[puppy43]

Hi Poodle2

and thanks for replying I think you have helped me out before with your knowledge.

I have read about drinking as much water as possible to flush things through which makes

good sense.

I can see I need to be careful to keep my eye out for fever and act quickly .

Have a new thermometer and will be vey watchful.

It's that 3am in the morning panic when you think you have everything under the sun !

I do hope your cold doesn't escalate and you keep well in the future

Thanks again for your and my consultant is local to where I live, but does have a part time

clinic at Bart's

kind regards

Puppy43

[lankisterguy Volunteer]

Hi puppy43,

-

Most patients get 3 or 4 infusions of Obinutuzumab / Gazyva before starting Venetoclax. This link and the graphic here show the sequence of Ven+G venclextahcp.com/cll/dosing...

-

During the first 3 weeks (and later) the doctors & infusion team will be closely watching your ANC or Neut# to make certain those stay above 1.0. If those numbers go too low, then sepsis can be one of the many infections that might plague you. TLS can happen in this phase but it is not common.

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On day 22 and each of the next 4 weeks, when you have a dose increase, the doctors will run frequent blood tests over 24 hours. These are to detect if your mineral (potassium, phosphate, calcium, uric acid) are increasing dramatically- the indicators of TLS. They may also prescribe allopurinol and strongly suggest lots of hydration ( ~2 liters if water daily) starting 1-2 days before each dose increase. For nearly all patients, the hydration and frequent blood tests have prevented any serious TLS complications.

-

Len

Ven+G dosing schedule

[puppy43 in reply to lankisterguy]

Hi Len,

thanks for your reply it's always good to hear your expertise and take great store by what you say.

I think it's the sepsis that worries me the most as I have an issue with severe diverticulitis

and usually end up on antibiotics or in A and E a couple of times a year.

I had considered asking about prophylactic antibiotics during treatment to lessen the risk of infection , but that might not be possible I will talk to my oncology nurse.

Fingers crossed I will be fine and am trying to remain as positive as I can .

puppy

[lankisterguy Volunteer in reply to puppy43]

Hi puppy43,

-

Some UK doctors seem to be using Co-trimazole as a prophylactic for CLL patients- it is both and antibiotic and anti fungal. You may want to suggest that to your consultant:

healthunlocked.com/cllsuppo...

en.wikipedia.org/wiki/Trime...

Trimethoprim/sulfamethoxazole, (also known as Cotrimoxazole) sold under the brand name Bactrim among others, is a fixed-dose combination antibiotic medication used to treat a variety of bacterial infections....It is used to treat urinary tract infections, methicillin-resistant Staphylococcus aureus (MRSA) skin infections, travelers' diarrhea, respiratory tract infections, and cholera, among others.[2][7] It is used both to treat and prevent pneumocystis pneumonia and toxoplasmosis in people with HIV/AIDS and other causes of immunosuppression.

-

Len

[prbs2707]

Hi puppy43

The others have said it all but just to say. TLS is very rare now. The protocols in place, in particular the need to drink often and regularly, make it very unlikely and the teams are right on it so if you follow their instructions you will be fine. The Obinutuzumab tends to debulk the cancer before you take the Venetoclax which again reduces the risk.

But Sepsis though also unlikely, is more of a risk. After my 2nd infusion of Obinutuzumab I developed a high fever that night and went into A&E with neutropenic sepsis. Again the hospital were right on it and I was on a strong IV antibiotic infusion without delay. A couple of days later I was fine and having the next dose of O. No further problems during the 12 monts of treatment.

The key thing here is to look for the signs. Have someone with you or someone you can call if you develop a fever and dont delay in seeking help.

Lots of luck with you treatment. Its a brilliant combination and now almost 12 months since my last V pill I am a new man in remission. Hopefully it will be a long one!

Take care

Patrick

[puppy43 in reply to prbs2707]

Hi Patrick,

yes I agree about sepsis being the main risk and with our hospitals in the UK being under

great strain atm I fear things getting out of hand before being treated or being stuck in

A and E for hours. I do have a card given to me by my team which says I need to be seen

quickly during treatment which is helpful and I carry it with me.

Being aware seems to be very important and knowing changes that are relevant .

I am so pleased you feel like a ' new man' and I sincerely hope your remission is very, very long

best wishes

Puppy

[Lawand1]

I write to you from my hospital bed having been admitted for the second time in eight weeks with sepsis. I also had TLS on the second week of the V ramp up. Here’s the good news….so long as you tell the hospital staff how you feel, and don’t be a martyr, they’ll catch it, should you get it, in time where their procedures are thorough and effective. I never felt ill at all with TLS and don’t know what sepsis feels like specifically outside what a bad cold feels like. Likelihood is you’ll not get either so don’t worry, but if you do, it’s all very manageable albeit annoying! Best wishes

[puppy43 in reply to Lawand1]

Hi Lawand1,

thank you for replying and like Patrick you make points about awareness and acting quickly

which I have taken on board . As you say manageable , but annoying ! which made me laugh

as I think we CLLers just want to lead a relatively normal life which hopefully we will

achieve

Get well soon

Puppy

[HopeME in reply to Lawand1]

Lawand1

Thanks for providing a real time, real life experience. May I ask what you felt like and how you determined you had sepsis? My biggest fear is missing the signs of sepsis and not getting help in time.

I hope you recover quickly.

Thank you,

Mark

[Lawand1 in reply to HopeME]

hi, it was simply a high temp, chills and feverish. Just like a cold. It was only when I got tested did they tell me it was neutropenic sepsis. The powerful antibiotics they blast you with made me feel better within a few short hours. Then it’s just a case of ensuring the inflammation is sorted and the neutrophils are recovering (in my case with daily G-CSF). It’s annoying because I’ve been here since Tuesday night and have felt well since Wednesday! However my neutrophil count remains below 1 and they won’t let me out until it’s 1 or more. Next results later today….

So, have a thermometer nearby and anything over 37.5 (I guess), get on to your care team who in my case sent me to my local a&e and had called them in advance to ensure I got priority.

[HopeME in reply to Lawand1]

That is very helpful. Thank you.

I have dodged infections so far during five cycles of V + O but I know I’m vulnerable so I’m always looking over my shoulder. I hope you get out of the hospital soon. I was in for six days at the start of the year (I had an accelerated ramp up of V in the hospital) and I was going crazy by the time they let me out so I understand your situation/frustration.

Best,

Mark

[Big_Dee in reply to Lawand1]

Hello Lawand1

I spiked a 103+ F temperature on second day of a B+R treatment. Doctor put me in the hospital for possible sepsis for 5 days. It takes five days to do sepsis culture. Felt fine in hospital and outcome was no sepsis.

[lexie in reply to Lawand1]

When my husband had sepsis I asked the ICU RN attending him what sepsis feels like. She said it was like the worst flu imaginable but all over. So far worse than a bad cold according to her.

[Lawand1 in reply to lexie]

if you catch it straight away, as soon as your temp goes up beyond normal, it’s like a cold. If you leave it for days to get worse (as I did the first time it happened), then yes it’s absolutely awful. Don’t delay folks!

[NaturalWaze]

I started with O, first treatment in a hospital stay. My doctor does it this way to monitor for TLS and hydrates more than can be done on one’s own. I am not certain but I thought afterward she told me I had had TLS but she monitored and treated it. I could be wrong. But I am sure that beforehand my paperwork said “TLS Risk”. I am surprised to read people saying it is rare; my treatment was only 2 years ago.

[skipro]

Hi

When I looked over the data from various papers and the NCCN, the incidence of severe grades of both were relatively small.

There are a lot of things you can do to prevent

Or minimize these.

Has your doc given you info on mitigation strategies

Regardless, if you do get a fever get to the hospital ASAP as quick intervention a huge difference.

Good luck and God bless

Skipro.

[puppy43 in reply to skipro]

Hi skipro

Thank you so much for replying I will ask my doctor as you say about mitigation strategies

It’s good to hear the risks are low as it certainly adds to the stress of treatment thinking Sepsis could occur

Thanks for you good wishes

Puppy

[skipro in reply to puppy43]

you bet

I did have an opportunistic fungal infection that could have been fatal but early intervention turned it into a routine easily treatable situation 👍😀🙏

So just follow the guidelines, get checked early if anything seems out of the ordinary and you should be fine.

God bless