I am due to start my O and V treatment Wednesday ( should have been Tuesday but delayed 24hours because of funeral .. God bless the Queen .. quite a lady .
I’m feeling quite nervous but am looking long term to getting back to some normality .
fingers crossed it is uneventful and boring I will settle for boring 😂 Thankyou for your support over my years of W and W . Will try to keep you posted on my progress as I have found the experience of others informative .
Hilo13, I have not been treated with O & V, but here that it does very well. I pray that this pts you into great remission and that you can get on with life!
Chris
Wishing you the very best, and here's to boring! 🙂
Debbie
I hope it all goes smoothly. If not, I hope the team monitoring you corrects the course quickly back to smooth sailing.
Thankyou
Hi Hilo
I’ve been on O&V since February and I’ve been really lucky. All has been good. Best advice I got was if you get an initial reaction, which I did, don’t try and brave it out. Tell the nurses immediately. I just got the dose slowed and some more cover and I was fine after that. And no problems since. Good luck.
Thankyou it’s good to hear from someone on the same journey May it stay on course good luck as you continue.
Hi Hilo13
I started just about 2 weeks ago with O. I will start V by end of the month.
The split of i.v. In 100mg on Day1 and 900mg on Day 2 did work out well for me. I had a fever days after, had additional blood test and was told all fine, nothing to worry, just the body reacting. O on Day 8 went smoothly, only felt tired after it. So I am back to work and feel fine.
Please if your condition allows, drink a lot of water during the i.v. process. I drink about two liters each time and it feels helpful minimising side effects.
Wishing you/us success with the treatment and good quality of life!
Murmeli
thank you for taking the time to share your experience and your advice I will definitely be drinking water 👍stay well and good luck
Hi, just sending you love and support as you begin O&V. I went through the same combo starting in march 2021 and ending 6 months ago. I was stage 4 CLL at the beginning with lots of symptoms but now 18 months after commencement i feel GREAT! and so i feel sure will you. They are wonderful drugs and you will be amazed how quickly they clear the CLL cells from your body.The first infusions of O can be tricky, I think most of us had some sort of reaction but dont worry the staff now know exactly what to expect and how to deal with it. After that it was pretty straightforward. The infusion days do take a long time but just go with it. I took books, a tablet for music and old films and also nodded off often and the day just slips by. To be honest i quite miss those days in the day centre!!
My one word of advice is make sure you drink lots during the day especially when you start V. It's important to keep washing the toxins through your system. It does mean several trips to the loo during the day at the day centre trailing your infusion gear behind you Ha Ha!!
Anyway take care of yourself and know that we are all with you and there to listen if you have any problems. Keep us updated. My best wishes. Patrick
Its reasuring to emphasise as you have done that most of the time is spent sitting in a chair. Apart from a few moments changing treatment bottles and checks on blood pressure, oxygen levels etc nothing happens. The nurses will slow the drip down if there is a problem but once a balance has been found it is a waiting game. When we are nervous we imagine something terrible is going to happen. Something to read or do is needed to while away the time. Anne uk
Couldn't have put it better myself - this mirrors my own experience and outcome -I completed my course in July this year.
Great to hear well done. The one enduring problem for me was low neutrofills. The consultant told me it would take about 6 months post treatment before the immunity would start to. Wake up again. Sure enough 6 months gone and my neutrophils are holding up on their own. Life is good. Lots of luck and best wishes for a deep long remission.. Patrick
Best of luck going forward!
Drink all of your water, tea and other fluids. It’s so important!
The V ( at 400mg) causes me some nausea but nothing that Zofran & compazine can’t take care of.
God Bless the Queen. She was a lovely lady.
Sallie
hi. I am just a couple of weeks ahead of you. Started on September 1st. All has gone quite smoothly - not even had chance to be bored as have made a friend with another local lady so we have lots to chat about in between therapeutic naps! I had a short lived reaction in day one with a ‘hot flush’ type and some nausea. Immediately stopped given iv fluids and anti nausea drug. Treatment resumed at slower rate without further incident. Bloods were tested before the treatment next day and were already showing huge drop in white blood cells from 264 to 80. By blood test Tuesday following they were within normal limits and I could tell spleen greatly reduced in size. Next two treatments have been absolutely trouble free tho I have felt a bit sleepy.
Due to start on the tablets by end of month.
Hope all goes well for you too. Please feel free to compare notes at anytime.
Jude
Good luck on your O+V journey! May it be smooth and effective.
Thankyou
Wishing you an uneventful treatment journey! I started V+O Sept 2020, finished V almost a year ago and still MRD negative! This truly is an amazing combo.
All the best wishes & prayers headed your way Hilo13! Take good care & 🤞just like you asked!! You've got this!!
Cookie~
Thankyou
Go get it! Best of luck to you. I am coming up right behind you on a very similar journey. Im feeling all of the same nerves with balanced optimism.
Jeremy
Here we go again!
Should I go to a CLL specialist?
Have COVID - should I get Paxlovid/
Im new here so I have tons of questions
BLood results and should I go away for a few days? Advice needed!!!!
