Hi everyone, after the meeting and discussions with my Doctor I had signed the consent form for the treatment to start. It’s going to be a year of combined drugs with Obinutuzumab for six months introducing Venetoclax at the third week into the treatment. I have been given information to read about the side effects and what to expect, I must say since last week My emotions are all over the place I am so anxious and concern what the side effects going to do to me , am I going to be able to cope with this monster I am really worried about it
Has anyone had this combination before just wanted to get all your input on this
My doctor said this is a treatment available on the NHS and i apparently am eligible for it , I am not sure why it’s not given to everyone .
The treatment will be starting on the 20th April I am trying to find out much as I can to be prepared when the day comes
Bless you all 🙏🙏🙏
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Altindal22
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Click on my account and read through my posts, as they'll lead you through my little treatment journey in much more (positive) detail than I can type here.
Hi Altindal22,I started obinutuzumab infusions on Feb. 2nd & 3rd of this year. I then had infusions on Feb 9 and Feb 16. I had absolutely no problems at all with the infusions. There was never a need to take a pause or slow down the rates and my absolute lymphocyte count responded immediately. Unfortunately, I was not able to complete the six month course, as I developed a high fever and lung inflammation. The lung inflammation is not a common occurrence so don't be frightened. I apparently had an allergic reaction to obin. The problem resolved with 6 days of steroids. I started Venetoclax 20 mg four days ago and so far no issues except for high potassium on my second day, which also resolved with medication. I ramp up to 50 mg on Monday. This is a great drug combo and no doubt you will do well. As they will tell you hydration is super important. Venetoclax is dispensed with detailed instructions so it is reassuring to have that documentation on hand to guide you.
I'm in the USA, and not medically trained, but many of the recent seminars where CLL Expert doctors explain how they choose treatment regimens, indicate that FCR chemo is offered only to a very few, selected patients with specific genetic and medical profiles. It's low cost and completed in 6 months.
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Patients that don't fit those genetic and medical profiles are often offered a BTK inhibitor, like Ibrutinib / Imbruvica or Acalabrutinib / Calquence. That treatment is usually daily pills for many years, works fairly slowly to resolve CLL issues and does not require lots of testing or hospitalization.
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The O & V (Obinutuzumab / Gazyva & Venetoclax / Venclexta) you have been offered is a heavy duty treatment that needs close & experienced medical monitoring for the first day of Obin and the first few weeks of Ven. You should probably get to know your CNS (Clinical Nurse Specialist) and have them on speed dial. But like having an experienced guide / Sherpa on safari or mountain climbing, a good medical team will confidently guide you through the periods that have potential challenges. After 12 months of treatment, you will likely have multiple years of remission with few issues.
You sound like you do know even though you say you are not medically trained thank you for taking time to let me know all you know I hope and pray it’ll be easy 🙏
I had FCR in 2010 and that was the only choice now years later I take Ibrutinib.It wont seem like it but you are really lucky to get a combination like this.
The NHS were only doing trials of 2 drugs in 2019 when I began Ibrutinib and because I had been treated before I wasnt eligable. They were randam trials and not everyone got 2 drugs.
I rememberI had about 13 tablets and a Rituximab infusion. I looked at the tablets and rang my daughter. She had a 6 week old baby but she came round and stayed with me. I took the tablets and nothing happened. She wouldnt even let me make a cuppa. She said I had to rest but nothing happened, I was fine.
I hope the treatment works well because eventually you may be able to stop it.
Dont be frightened. The infusion will be given slowly and take something to read. You will have a cannula in your hand and you will be monitored. I read and relax when I have ivig. I havent had venetaclax yet but it is very successful.
It wont be like strong chemotherapy. Try not to worry, Anne uk
Husband had this combination he never really stayed on the complete dose of 400 mg of Venclexta and with 6 months of treatment due to good blood work except low white counts he was able to reach residual disease undetected by October and has been treatment free since with excellent counts. Obinutuzumab is easily tolerated but it is likely the first time you may become very tense and need to stop and restart but from there on should be smooth sailing. This is a great combo and chemo free. You are in good hands. Take care.
I started this treatment in Nov 2020 and am at the tail end now. I had reactions with my first O infusion, but the medical team was right there with me and they are pros. I had fevers and body shakes (rigor). On the 2nd infusion, I only got a little itchy and they gave me an antihistamine. I didn’t have reactions after that.
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