My husband has CLL and finished FCR in April 2019. Due to low platelets, enlarged spleen and ALC doubling he needs to start his next treatment even though he feels wellV&R is the treatment starting on 15th May. I have researched extensively including within this group, and am aware of the treatment regime and the need to ramp up slowly. However I am scared of TLS, Sepsis, and pneumonia as he was hospitalised with pneumonia for a month before diagnosis.
I know everyone is different and nobody can say what will happen to him but I am scared. We are in the UK and have been shielding since 2020 so no exposure to infections or Covid and I see the risk of those things increasing the more he is exposed to people in the hospital and more so if he is hospitalised
To add to it I have the statement in my head from the consultant at his time of diagnosis saying "you have 10 years" and his new CLL consultant saying his remission will be less this time and each time
I suddenly feel we are on the rollercoaster but hurtling towards the end of the ride. I am a positive person and grateful there is treatment but today I am struggling. I need to move past this feeling and ny way is to be as informed as I can about navigating this next stage. I look to this wonderful group for information and advice. Thank you
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Sanders9
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I understand the fear that you and your husband are facing as I’ve walked the same path as your husband. I began BR chemo in the spring of 2018 and this treatment gave me a four year remission. I began V & O (O is very similar to R) on December 28th 2022 and I expect to finish V in late 2024. I am also unmutated like your husband.
Thus far my treatment with V & O has been easier than my chemo treatment. I really haven’t modified my life too much. I’m in my early sixties and still work and travel with modest precautions. I have two teenagers living with me so I am unfortunately constantly exposed to viruses but have been able to manage this situation without serious infections. My life has been and is normal and happy.
V + R (or O)is an amazing treatment and the vast majority of patients do well and enjoy a complete remission. Focus on keeping your husband upbeat. It is highly likely he will easily handle V + R and achieve a complete remission.
Thank you so much Mark. To be honest I am worrying more than he is. It is good to hear your experience and it lifts my heart to hear you are living a normal life. I wish you a long remission when your treatment ends
I am about on the same path as HopeMe and have completed my V&O in November, I am a little bit older than when I started V&O but other than more tired, doing ok. Blessings.
Like HopeME , I've walked that path also, and with a good medical team, encouraged by an involved and alert caregiver like you, avoiding the bumps and pot holes like TLS , sepsis and pneumonia is the usual result.
I have had 6 different drug treatments for my CLL and my remissions now are only a few months, but 16 years after diagnosis, I am fine with continuous treatment.
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Hellow Sanders9, when treatment time is coming, I think we all get anxious. I was. I had a similar treatment - V + O. Venetoclax can lower your neutrophil counts, about 50% patients can experience neutropenia. It can be managed very well though - either by lowering the dose or prescribing GCSF injections to increase your neutrophil count.
I was neutropenic for the whole duration of my treatment. I actually did have neutropenic sepsis but it was at the beginning of my treatment, about 10 days in and I believe it was mainly because I had a chronic infection prior to starting treatment. I firmly believe that if I had not been unwell for the 4-5months prior to starting treatment, I would have avoided it. There were two things that stuck with me when I had it:
1) The ICU consultant could see I was scared when I was admitted - he told me this: sepsis is actually very well treatable - you just need antibiotics and IV fluids, nothing else. The most important thing is to come to us early. So any temperature over 37.8 means a trip to A&E.
Once you get there, they deal with you immediately. Sometimes I needed to remind them that I need my antibiotics within an hour of arrival as there was a risk of me having neutropenic sepsis but in general, they take it very seriously with chemo patients. I had my little emergency neutropenic card which I was given by my CLL consultant. I had several trips to A&E because of fevers but I didn't have sepsis again. I hope this is reassuring.
2) My first visit to the chemo ward after I was released from the hospital after my neutropenic sepsis episode - I was still shaken a bit a my consultant put things into a perspective - she told me - I know it sounds scary to you, having sepsis, but look around, about 80% of the patients on this ward have gone through that, all of them. We know how to deal with it, we do it every day. Follow our instructions, watch out for the warning signs and we will keep you safe, I promise...and they did.
I'm sure you and your husband would be as vigilant as myself.
I had many severe neutropenia phases I went through during my 12 cycles,p I am also a mum to three kids (4, 7 and 10) so lots of illnesses that I could not avoid - colds, stomach bugs, cough, you name it, I had it.
The only one that made me a bit unwell was the flu. I was jabbed so managed that quite well but had a secondary chest infection afterwards. I got antibiotics from my team quickly, they increased my GCSF injections as my neutrophils were around 1 at that time. Once my neutrophils got over 2 and I finished the antibiotics, I was OK. I had a cold a month for most of my treatment but it was manageable.
The treatment time will be the beginning of your husband starting to get better again. Embrace it, follow the doctors instructions and with you by your husband's side,I am sure he will do well. Wishing you all the best.
Thanks Petra for putting some of your challenging experiences into perspective. I am glad you came through them. My husband feels well with no underlying infections so we are hoping this puts him in a positive place when treatment starts. I like a plan, so will have all protocols in place and a bag packed should we need to go to hospital.
Thank you. Yes, having a hospital bag ready is a great idea. I had mine packed up and ready to go. Hopefully you will feel less anxious once reading through other people's experiences. The fact that he is well is a great starting point, most people, who are well to begin with, continue feeling that way...and if anything unexpected comes up, the doctors are used to deal with these issues. We just need to listen to their instructions.
I can’t emphasise enough how caring the nurses were when I had my V&O treatment. I missed them when I got onto the tablet stage! They watched me like a hawk at the beginning and I had a small reaction at the beginning and they sent me upstairs to the ward. I always felt safe because they watch you so closely. If it’s like mine, you are on a haematology day unit. Everyone is in the same boat re infection so you feel really safe!
If you get an infection, they are on it within minutes!
The bag is a really good idea! I had a bag for my days at the day unit - with a bag of almonds, two types of headphones, a phone charger, audiobooks in my phone, water containers - that could be converted into a hospital bag. I took along my hospital bag for a while, in the boot of my car, like a lucky charm. I felt if I was prepared I would be less likely to be admitted.
My V&O was very successful and I’ve only now consigned my bag to a cupboard, and it worked a charm!
Prevnar13 (PCV13) followed ≥ 8 weeks later by Pneumovax 23 (PPV23/PPSV23)
As time is short PPV23 may have to do. (it's all I got a month before treatment.) Inform the consultant about lack the of these vaccinations. Go to his GP.
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Most NHS hospitals will give supporting antibiotics for pneumonia while on treatment, this is Co-trimoxazole, either 400/80mg daily or 800/160mg every other weekday.
I can't say anything about neutropenia, low platelets or other blood issues as I'm one the 50% that had no issues and cruised though V+O.
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TLS is very rare but he will have to play his part. Drinking water/fluids is vital. I feel the advised 1.5-2L is low and aimed for much more.
He should be given Allopurinol either starting before or maybe during ramp-up of Venetoclax. If he is "high risk TLS" he should be given an IV of Rasburicase an hour before taking the first 20mg and 50mg tablets and additional IV of saline
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You can ask for a copy of the protocol. There are lots of NHS protocols for Venetoclax + Rituximab online but nearly every one of the 21 cancer alliances has their own.
From NSSG protocol L.111. Serious adverse reactions are rare.
The most common adverse reactions (≥20%) of any grade were neutropenia, diarrhoea, nausea, anemia, upper respiratory tract infection, fatigue, hyperphosphataemia, vomiting and constipation.
The most frequent serious adverse reactions (≥2%) were pneumonia, febrile neutropenia, and tumour lysis syndrome.
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Time wise he has reached median for unmutated IgHV on FCR. There is no reason to expect he won't reach median for VenR and re-treatment with VenR, then there is a covalent BTKi. Non covalent BTKi is in development for NICE approval, CAR-T therapy is in development. There are 2 new drug types in trials. If you asked that doctor today he would probably still be saying 10 years from now.
Thanks Skyshark he is upto date with all vaccines and consent forms were walked through and signed on Tuesday. He has been told that Acalabrutinub would be after V and R when the time comes. I was also heartened that he had a long remission with FCR with him being unmutated. I have the ramp up schedule from the hospital for the first 5 weeks. His consultant does not need him to be hospitalised for ramp up which is a good sign. Thanks for your comprehensive response it is appreciated
I was diagnosed with CLL back in 2008 when I was 52. I’ve had FCR, BR, Ibrutnib, Venetoclax and Gazyva (twice) and am now on Zanubrutinib. I’ve had Kidney cancer. I was only in remission once for one year. But I worked full time through all of the treatments and have a camper and go camping at least monthly. When I started my first treatment with FCR, there weren’t any other treatment options. But new treatments were developed and more are in testing
I do not concern myself with Covid or other illnesses I’ve had pneumonia so many times I’ve lost count. In fact I’ve had it twice this year already. I am on the wrong side of the bell curve with my CLL (worse than the great majority of people). BUT! I continue to live my life to the fullest and enjoy every day. Please don’t live in fear or live in a cocoon, get out and enjoy your life!
IRN83 you have certainly been through it but have clearly managed to life life too. My husband was 54 when diagnosed and as we approach his next treatment he also wants to work out how we live life whilst mitigating risk. It is a fine line and I am more apprehensive than he is but I agree we have to find a way through to enjoy life
Hello. I think I understand much of what you’re feeling.
My husband had FCR in 2015 and, although that was tough, he went on to do well until 2021 when he needed to start Rituximab and Venetoclax.
He also went to be diagnosed with prostate cancer, so he was treated for that, alongside the CLL! 🤦♀️
(He is the love of my life and my hero)
This second treatment was SO much easier than the FCR. Okay, it was a little more complicated at the very start but there will be lots of support from the hospital, I’m sure. Then it was mostly just taking tablets every day.
Paul went on to do 2 years of Venetoclax and stopped towards the end of last year. His bloods, so far, have been excellent since.
I understand what it’s like to be the other half ( I do all the research and worrying!!), so I know what you must be going through, but try not to worry too much. Hopefully, it won’t be as bad as you anticipate.
We isolated completely for the first two years or so of Covid and have only fairly recently relaxed much more. In fact, we did actually contract Covid for the first time at Christmas (🤦♀️), but the antivirals were available and he wasn’t very ill, thankfully.
I am a big worrier myself, but my advice to you would be to not worry until you actually need to… it will use up the energy you need to support your husband!
I hope things go well and you will be able update us with positive news!
I hope this has helped a little. Look after yourself too!
Fran thanks so much for your reply. My husband is also the love of my life so I know you understand how I am feeling. I am pleased to hear your husband has done well on V and R and it is easier than FCR.It is good to hear you have managed to brave the outside world. We need to get to that stage and if I am honest it is me that is more scared. I don' see people I see Covid. I am pleased to hear your husband did well on the antivirals
You are right about needing to look after myself too. It is advice I give to others but harder to do for yourself 🙂 Your post a has definitely helped so thank you
Hi. I’m glad it helped. Yes, I was terrified that Paul would get Covid (we had a tough time, like many others)… isolating completely and we only left the house to get our jabs…luckily we had just retired as Covid started (bad, or good timing!) and we get on well 😂 We had food delivered and we washed everything that came into the house! I know lots had it worse than we did but after I lost both parents and my brother, in a short space of time… and I’d not seen them throughout that time, we decided to move, in order to be nearer to our children and grandchildren (again we’d not seen them either)and once we moved, Paul said we should really start to live a more normal life, because we had missed out on so much. I found it incredibly difficult to adapt… like you, I saw Covid everywhere, but now the antivirals are such a help and the local Covid cases ( I monitored, obsessively if I’m honest, all the numbers involved 🤦♀️) have reduced so much, that I know he’s right.
I think you’ll be glad once the ramping up part is done and you can relax a bit more.
Fran reading your reply sounds just like us. 4 years of shielding everything delivered and washed upon arrival, no visits to or from family. Knowing you have both gone back into the world and managed to survive Covid is good news. I will keep you posted. I feel that you really understand me
I was treated with FCR late 2017, then needed treatment again late 2021and V&R was available (Australia). I had several side effects concurrent issues with the FCR - shingles, atrial fibrillation, a pneumonia. Plus became TP53 deleted.
The V&R has been comparatively incident free with just a temperature spike right at the start of treatment which was sorted over a couple of days in hospital, but otherwise ZERO problems. Completed the full 2 years at 400mg in Oct 23. Other than neutrophils being a little low, (never so low as needing boosters) all blood work is OK. We were, and remain cautious about covid.
My doc is optimistic about the outlook for me and about having multiple treatment options , and more emerging, if I relapse some time.
I've seen plenty of similar +ve V journeys reported here. Hope all goes as well for you.
Thanks L I appreciate your reply. I am pleased V and R was less troublesome than FCR, which sounds like it was difficult for you. Covid is still the concern that will never go away. I wish you continued remission
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