Thought I’d give you an update since my last post. I had my consultation a couple of weeks ago and it was clear to my consultant that I needed treatment. My spleen had grown to 19cm and my other lymph nodes had also increased. My WBC had almost doubled from what they were when I was diagnosed in July 2020.
Just 2 days before my consultation, on this amazing platform, it had confirmed that Obinutuzumab and Venetoclax had been approved in UK as a frontline treatment.
I started the obinutuzumab on Tuesday and they split the first dose into two days. I had mild reactions on the first day and stayed in hospital for a couple of nights whilst they monitored my bloods. I came out of hospital yesterday and my WBC had come down from 375 to 15. I am now at home resting, feeling tired and weak. I am scheduled to have my next dose of Obinutuzumab on Tuesday.
I am feeling anxious about the upcoming treatment but also feeling positive about the road ahead.
Thank you all for the amazing support and best wishes to you all
Amy x
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That’s great news. I am on same treatment and had fast amazing results.as well. Treatment scheduled to end April 2021 and still going strong. Keep going. It gets easier and you are healing.
Amy, thanks for the report on your treatment. I think you will do very, very well on this combination therapy. I hope you will continue to give us updates.
Thank you for the message and apologies for the late response! It’s going really well thank you. I have started the dose escalation for Venetoclax now so fingers crossed I can get to the full dose soon. Wishing you all the best.
Thank you for letting us know. I hadn't realised it was so fast - amazing. Really encouraging for those of us on w and w to get feedback on it. Is this treatment ongoing like ibrutinib or is it a series of treatments that then stop? Is Venetoclax a pill? We've heard from a few pple here with amazing results. Please do keep us informed. I don't think you need to feel anxious - it's very well tested and you're clearly responding in the right way. I would imagine you would feel tired and weak. You've been busy knocking off a mass of bad cells which were crowding out the good ones. I expect you'll become full of energy now you've got room for the healthy ones to come back.
The Obinutuzumab/Gazyva infusions on the ACE- CL-311 trial were limited to 9 over 24 weeks, with the first 1000mg dose split in two; 100mg followed by 900mg the next day, followed by at third, two weeks after the first infusion, then the remainder every 4 weeks. The first infusion is split because it's not uncommon to have an infusion reaction to the first infusion, which can be fairly strong and can come on suddenly. I had a strong reaction with my first infusion, just after the nurse checked my observations, which were fine, so someone should be monitoring you throughout the infusion, which takes about 5 hours as they gradually ramp up the infusion rate. (That time includes waiting for an hour for the premeds, which are given to reduce the likelihood of an infusion reaction, to take effect.) As is also common, I never had another infusion reaction after the first one.
You go through a ramp-up of the Venetoclax dose, which depending on your risk of Tumour Lysis Syndrome (determined by your tumour burden), may require hospitalisation for regular blood tests and observations. You start on a 20mg dose per day, ramping up each week to 50, 100, 200 and finally ending on 400mg per day, which you stay on for the duration of the treatment. Depending on the treatment protocol, you may be held on an interim dose if your neutrophil count drops too low, or you may be given G-CSF injections to support your neutrophil count during the ramp-up.
Thank you so much for your message and so sorry for the delayed response! AussieNeil has explained this treatment spot on. I am currently on the dose escalation starting 50mg tomorrow.
I think this treatment is going really well and I do hope this helps for when your time comes to have treatment. It has definitely given me more energy but still just as tired as I was before.
I am about to start O + V treatment. My hematologist keeps insisting that I will not need to stay over in the hospital. Is that realistic? Hope your treatment goes well. It must be a relief to finally start going after the problem.
For the first “O” infusion only, my CLL specialist requires hospital stay. She monitors for Tumor Lysis Syndrome and gives tons of fluid IV to prevent it. I think she also watches the body’s reaction to the drug. I had fevers for 6 days and felt pretty crappy so I’m glad I wasn’t home.
Hospitalization was never mentioned by my oncologist. I had a reaction to the first Obinutuzumab infusion and they handled right there in the oncology treatment room. I had nausea and lower back pain, which they treated and within a few minutes I was feeling better. Smooth sailing since.
When I was about to start Obinutuzumab, my doctor wanted to hospitalize me, but the hospital rejected the idea lol. (They’d never administered the drug before, & for some reason didn’t want to.) As a result, I had all infusions as an out-patient at the clinic. No reactions, no problems. In hindsight, I’m glad—saved me a small fortune in medical bills.
Thank you for your message and so sorry for the late response!
How is your treatment going? Did you stay in hospital?
I had to stay in hospital, like the others above have mentioned, for the first Obinutuzumab treatment and that’s because I had a fever and other symptoms of TLS. It’s just a precaution to make sure they monitoring your reactions to the drug but also rule out TLS.
I am currently on the dose escalation of Venetoclax and every week I have the higher dose, I am being admitted to the hospital’s hostel.. this is only because I do not live near the specialist hospital and if anything happens I am close by.
I hope this helps and it’s going really well at the moment. I feel better in myself and my spleen has
Reduced more than half!
I hope your journey will be smooth and successful!
Thank you again for the message and I wish you all the best for your future x
Aloha, nothing has happened yet, my oncologist said they have to get this treatment protocol added to their program before they can give me any estimate of what my costs might be. I am not getting worse, blood levels staying the same, so I think I will wait until the COVID pandemic settles down if possible. It's so helpful to have people going through the same thing to talk with.
Hi, I have had 2 full Doses in last 2 weeks .... no issues...have another 2 full doses in coming 2 weeks then monthly. I was diagnosed 3 weeks go with stage 3 , apparently I lite up the PET scanner. I am also on ibrutinib daily , again no side effects and still managing to look after my 3 yo and 1 yo full time. Hope it all works out for you.
Hallo,I started my V&O treatment 2 weeks ago. I stay at home and just visit the treatment centre once a week to get the Obi) Some additional times for blood checks.
That works pretty good. Lymph-nods (about egg sized in the arm pit) almost disappeard within this time.
The antiallergics given with the obi bring you down (pretty tired, like a hangover without the party but without headache or sickness either).
I had a Little „Irritation“ after the first minutes of the Obi infusion. That was anoying and frightening, but seems to be quite common (60%). My doctor explained it to me as a first reaction of the antibodies with existing antibodies in my blood. The infusion was stopped for about 30 minutes, I recieved some additional cortison. Afterwards ist was a scarry moment but it vanished as fast as it came. Very calming: it can be „switched“ away.
The obi infusions take a while. After the first day I was tired as hell, After the second I took a 20min walk right after the treatment.
My doc told me he wouldn‘t discuss every adverse effect with me due to their individual specifity. So far je was right with this strategy. Even though I am listening carefully to everything happening inside of me, there is nothing to worry about. Maybe the emotional rollercoaster is going on, thanks to the great support I recieve from my family, friends and workmates. ...great.
Thank you so much for your message and so sorry for the late response.
I’m so glad to hear the treatment is working well for you! I had the same experience with the Obi and my spleen reduced to over half by by second week of infusion. It’s amazing stuff and is really effective!
I know the feeling of annoyed and frightened, I was the same on the first dose of Obi. The reactions can be scary!
I wish you all the best in the future and hope this treatment continues to go well! X
Hi Amy - great news! Thanks fir the update.I, too, just had my first Obinutuzimab treatment; was in the hospital for 8 days. Had lots of fevers.... which finally went down! I’m at home resting too. A little stronger each day. And... I have my next treatment on Tuesday too! My WBC is now 5800 but was 80000 when I started.
Good luck on Tuesday and throughout this journey...
Thank you for your message and sorry for the late response.
I’m glad to hear you are feeling better and fevers seem to be a very common side effect with Obinutuzumab. I hope your treatment has continued to go well and you are ok?
Thank you and good luck! Wishing you all the best in the future
Hi Amy, I had my 2nd IV and it went a lot better. Just some low grade fever a few days later but now I feel great, better than pre-treatment. WBC is 4,000! Next IV in January, along with first dose of Venetoclax. Fingers crossed that all goes well!NW
I started on O & V about two months ago. I was initially hospitalized and due to side effects and other issues I ended up being there for ten days. When I had my first infusion I had almost every side effect possible. Luckily I had a great team of nurses who kept everything under control. Flash forward to now. I’ve had four infusions(zero side effects now) and I’m on 100mg of V.I feel better than I’ve felt in a few years. My labs are almost all normal and my energy level is great. I’ve even gone back to running and biking daily. The treatment has been a life changer for me and I’m sure it will be for you too.
Thank you for your message and sorry for the late response!
That’s great that you are feeling better since the first initial infusion! The side effects are scary but like you said the team of nurses around are incredible. Thank you for sharing your experience! This combination seems to be great for CLL and I hope more people are given this treatment plan!
Great to hear about your running and biking again! I need to get into an exercise routine again but have a dog for long walks which helps at the moment!
Thank you again for the message, good luck and I wish you all the best in the future!
Thank you. I hope everything goes smoothly for you. By the way, it’s my dogs, huskies(hence my screen name) that keep me motivated. I’m sure your’s will too.🐾
Hi Keith - I had my first treatment in November and was hospitalized for 8 days and thought that was the worst. But 10 days, ok, now I have my reality check that it does happen.I’ve had my 2nd infusion and am also doing great.
Thank you for this it is reassuring as I am feeling quite scared. I have to decide between FCR, Flair Trial or this new option of V and O. I am leaning towards the V and O. I am 55, female and WBC is 130. Reason for treatment is that this number has doubled in a about a year. My CT scan showed many swollen lymph nodes and enlarged spleen and liver. Thank you
Thank you so much for your message and sorry for the late response!
I would definitely recommend the V+O treatment I am on my first week of cycle 2 (12 cycles in total) and I am feeling so much better already! My WBC has reduced from 370 to 2 and that was just after the first 2 doses of Obinutuzumab! My spleen has now reduced so much my doctor cannot feel it and I can eat comfortably again!
Have you started your treatment yet? I hope it all goes ok and I wish you all the best in the future!
Hi RefuahShalayma, I have similar symptoms to yours, my spleen and liver are swollen, got a group of enlarged lymph nodes, my doctor notified me I would need to be treated in in the next few months, I am of similar age group to you. I have been worried since beginning of this year. However, knowing about members experience with O & V treatment gives me hope, great to share experience about treatment with others. My best wishes. Ezabella
Hello to you and Amy, So my treatment is due to start on 1st July about 6 months later than expected and 18 months later than was originally predicted. My Dr told me that I will feel a whole lot better but I told him I already feel fine, thank G-d
Is that unusual to be feeling well now?
I hope I will also be able to share good news about the treatment.
Other than losing tons of weight, I don't really have symptoms.
Hi R Shlayma, I also feel overall healthy, still unable to come to terms with immenant treatment, my blood components still within normal range, platelets around 125, Netrophils at 2.2, Hg 12.9. However, my Ferretin Serum is low (early stage of anaemia, as Hg still good so I don't feel tired). The main trigger for treatment would be the enlarged liver. My WBC at 46 and lymphocyte around 40-42 (doubled in one year). The concept of needing treatment is scary for me, I thought I may stay on W&W for longer, it has been only 5 years since diagnosed, as if the honeymoon is over, preparing myself now to face the reality about being sick with a form of blood cancer. I don't feel I am sick enough to start treatment, that's why I am anxious. Anyhow, it is always worrying with treatment or just w & w. My best wishes to you, ezabella
Hi Amy! I am on a clinical trial that includes O+V+Ibrutinib. The first day I had the O infusion it started with only 10% of the full dose. The next infusion was for the 90% left. After that infusions were all the full dose. I only had a reaction the first day. Some string rashes just a I was getting to the end of the infusion. They gave me a lot of Benadryl and the rash soon disappeared. That was over two months ago. Two weeks ago, I started on the V. So far so good. I was also amazed as to how fast my WBC went down after the first O. Hang in there!
Thank you so much for your message and sorry for the late reply!
Yes, that’s exactly what happened to me, had the split dose on the first day and it was only the first 10% of the dose I reacted too and since then (touch wood) they have been fine with no side effects! I get the occasional tightness in my chest and breathlessness but have had a chest X-ray to rule out anything.
I am also now taking the V and so far so good also!
Thank you so much for sharing your experience and it’s so great to hear and talk to people who are going through the same. Wishing you all the best and good luck
Great that you have not had any more side effects! I also experienced some breathlessness after starting the treatment, but no chest tightness. But as time has gone by I seem to have gotten over the breathlessness. I am now in cycle 4, in other words I started over 3 months ago. Hopefully you will get over that too.
At first I thought the breathlessness had to do with my heart, as I had had several stents put in just before staring the treatment. I have seen my cardiologist and we are still in the process of evaluating that, but now I think it was the treatment, not anything to with the stents or my heart. Merry Christmas, and all the best!
Hello, So I have chosen the V and O option, not sure exactly when starting maybe not till January. So I will going through the same procedure a little while after you....
Apologies I have just seen I have already replied to you!
I would say you have made the right choice not that I have experienced the other treatment methods but the results I’ve had already have been fantastic and seems to be a common trend with this combination!
If you have any questions before or during your treatment please feel free to reach out! It’s great to talk to people going through the same treatment! Wishing you all the best and good luck x
Thank you for your message! The results are amazing and I am still in shock how quickly it’s working! I hope you are well and wish you all the best in the future!
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Started Clinical trial-obinutuzumab+ venetoclax
Obinutuzumab and a bit of worry. 
I'm new here - (UK based) carer for CLL husband who has just commenced treatment with obinutuzumab & Venetoclax - not going great 
Venetoclax started 
