I had my results today from O and V treatment.
it’s been a bit of a slog with nausea and sepsis a couple of times .
All worth it , MRD was the outcome .
I have a chronic cough at the moment caused by the treatment so am on antibiotics for the foreseeable future . A small price to pay for such a positive outcome .
Fantastic!!! It was all worth it! I got my UMRD result in September and doesn't it feel great! Hope you get over the cough soon and enjoy a long remission ❤️❤️❤️
Great result! I hope you get over your cough really quickly.
Congrats on achieving MRD! I know that nothing compares to hearing those magical words, after going through treatment. I hope you will have a nice long break from any treatment.
fantastic - I got sepsis before treatment but had a few surprises during treatment. Started flair trial Jan 2020 went into remission by Sept 2020 - have remained so ever since. From Sept to March I take a prophylactic antibiotic 3 x a week.
Wonderful news. Wishing you have a long remission.
Great news.
GREAT!! So pleased to hear your news. UMRD.... possibly the best 4 letters in alphabet! I finished O&V in march 2022 so coming up for 2 years of remission. Had a few hiccups along the way and like you I got sepsis (not something I ever want to repeat!) But as Poodle2 said its all worth it. Personally I have never felt better. Walking the dog 3 miles a day, working my allotment, riding my bike. Life is good and I say a prayer of thanks every day to the scientists who made this possible.
So go off and enjoy yourself but please don't get carried away as your immune system (like mine) is likely to be compromised from the treatment for months, even up to a year and may never be as good as it was pre CLL. So just take care in crowded situations. Personally I wear a good mask when flying, cinemas, theatres etc. Just common sense, basically following the old lockdown rules. Sending you lots of luck and very best wishes for continued good health. Patrick
Hi, I’d like to ask when you got sepsis during the treatment, what cycle were you on? What were the symptoms? Did you go to A&E (ER)?
Hi JustAGuy,
I started on Obinutuzimab in March 2021 and had a bad reaction to the first small infusion. Feinted sweaty sick etc. They decided to postpone the infusion for a week. Went back the following week and the infusion went fine and left for home. That evening began to feel ill and developed a high temp. Luckily my wife is a nurse and contacted the hospital who told her to bring me in to A&E immediately. By then my temp was very high and to be honest I dont remember much of the next 48 hours. They diagnosed Sepsis (I think haematalogical Sepsis was the excat diagnosis). I was admitted to a side room (Back then it was full on Covid time at the hospital and they didnt want to risk me getting that as well). I was treated with powerful intravenous antibiotics which worked their magic. By day 3 I was feeling much better and moved to a haematology oncology ward and after 6 days they decided I was well enough to go for the first full dose O infusion, which they gave me on the ward. All went well and I was discharged the next morning. Never had another reaction all through the year of O&V.
MY consultant thought I might have been carrying a slight infection when I went back for the original infusion of O and because the O basically clobbered my white cells and neutrophills it left me very vulnerable and the minor infection quickly developed into Sepsis. So to answer your question. I got Sepsis right at the start of my treatment and did end up in A&E.
Its not a nice infection although, as I say, I remember little but the NHS were excellent and treated me expertly and efficiently. I guess the bottom line for us with CLL is not to ignore infections especially if they lead to high temps but to quickly report it. I am lucky to be married to a nurse as I think if I had been on my own I would just tried to hunker down and take paracetemol and hope it would go away (as men do!!). Its a serious infection and very fast moving so if she hadnt whisked me off to hospital that night it might have been a different story.
Fast forward to today and I am absolutely fine. Throughout the 12 months of treatment and the 18 months since I have been well. I have had a couple of chest infections that responded well to antibiotics so all is good. Yesterday I had a 3 month review with my consultant. She is very pleased. I remain in remission and all my blood numbers are fine and stable (although IG's remain low which I think is par for the course for us) and said they dont want to see me for 6 months.
Hope that help, lots of luck to you.
Best wishes, Patrick
I had it twice as fat as I remember it was after the infusions . The first time wasn’t bad at all I’d caught it quickly . The second time like you I remember little until a few days later . Our protocol is to ring the Cancer centre which I did and was admitted to the Cancer ward immediately. The staff were on it immediately.
Congratulations. Sally
Congratulations, wishing you a speedy recovery from the cough and a long, healthy remission.
Congrats! I am nearly finished my V+O treatment and really hopeful for UMRD. May we all have long remissions!
Not far behind, 5 weeks to go, CT scan and BMB in March
Good luck for a positive outcome x
Congratulations! So happy for you!!!
Congratulations! That must be so reassuring. I hope the remission is loooong and peaceful
Congratulations! I hope you have a very long remission!!
that’s fantastic news!!!! 🎉🎉🤗
Hi, I’d like to ask when you got sepsis during the treatment, what cycle were you on? What were the symptoms? Did you go to A&E (ER)?
(I asked the same to prbs2707 on his experience.)
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