here I go 🀞: I am due to start my O and V... - CLL Support

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here I go 🀞

Hilo13 profile image
Hilo13
β€’37 Replies

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 πŸ˜‚ 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 .

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Hilo13 profile image
Hilo13
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37 Replies
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noeagaman profile image
noeagaman

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

Hilo13 profile image
Hilo13β€’ in reply tonoeagaman

from one Chris to another Thankyou x

Ghounds profile image
Ghounds

Good luck, please update us when you can.

Hilo13 profile image
Hilo13β€’ in reply toGhounds

πŸ‘ Thankyou

DebKat999 profile image
DebKat999

Wishing you the very best, and here's to boring! πŸ™‚

Debbie

Hilo13 profile image
Hilo13β€’ in reply toDebKat999

Thankyou

Hilo13 profile image
Hilo13

😘

CycleWonder profile image
CycleWonder

I hope it all goes smoothly. If not, I hope the team monitoring you corrects the course quickly back to smooth sailing.

Hilo13 profile image
Hilo13β€’ in reply toCycleWonder

Thankyou

Jake_Bullet profile image
Jake_Bullet

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.

Hilo13 profile image
Hilo13

Thankyou it’s good to hear from someone on the same journey May it stay on course good luck as you continue.

Murmeli profile image
Murmeli

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

Hilo13 profile image
Hilo13β€’ in reply toMurmeli

thank you for taking the time to share your experience and your advice I will definitely be drinking water πŸ‘stay well and good luck

AnneHill profile image
AnneHillβ€’ in reply toHilo13

Its always nerve wracking going for a new treatment. They know how you are feeling and once you get used to going you will just relax. Take something to read or occupy you as mostly its just a waiting game. Try not to worry. You are getting fantastic treatment, Anne uk.

prbs2707 profile image
prbs2707

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

Hilo13 profile image
Hilo13β€’ in reply toprbs2707

Thankyou for your reply and your positive outcome May it long continue

AnneHill profile image
AnneHillβ€’ in reply toprbs2707

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

Hilo13 profile image
Hilo13β€’ in reply toAnneHill

Thankyou Anne I want to get started now and as someone who is not very good at sitting will ensure I have plenty to read etc have a good day

SofiaDeo profile image
SofiaDeoβ€’ in reply toHilo13

Maybe a deck of cards for Solitaire? I don't like the electronic ones, one can't "fudge" at all......

woodsticks profile image
woodsticksβ€’ in reply toprbs2707

Couldn't have put it better myself - this mirrors my own experience and outcome -I completed my course in July this year.

prbs2707 profile image
prbs2707β€’ in reply towoodsticks

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

Edhair97 profile image
Edhair97

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

Hilo13 profile image
Hilo13β€’ in reply toEdhair97

Thankyou for your good wishes and i trust you continue to improve

AnneHill profile image
AnneHillβ€’ in reply toEdhair97

I bought some bigger mugs for tea and coffee and I always use a handbag with a bottle of water in. I find if I go out I dont drink enough. I ask for tap water in restaurants. It is good advice, Anne uk

Hilo13 profile image
Hilo13β€’ in reply toAnneHill

πŸ‘ Thankyou

Jude693 profile image
Jude693

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 β€˜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

Hilo13 profile image
Hilo13β€’ in reply toJude693

Thankyou for sharing your experience I am feeling reassured by all the kind people who have taken the time to answer and I wish you well

New-bee-cell profile image
New-bee-cell

All the best! I am wanting the best for you.πŸ˜πŸ€

Hilo13 profile image
Hilo13β€’ in reply toNew-bee-cell

Thankyou x

NaturalWaze profile image
NaturalWaze

Good luck on your O+V journey! May it be smooth and effective.

Hilo13 profile image
Hilo13β€’ in reply toNaturalWaze

Thankyou

Flute117 profile image
Flute117

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.

Hilo13 profile image
Hilo13β€’ in reply toFlute117

Thankyou

All the best wishes & prayers headed your way Hilo13! Take good care & 🀞just like you asked!! You've got this!!

Cookie~

Hilo13 profile image
Hilo13β€’ in reply to

Thankyou

Jmiah717 profile image
Jmiah717

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

Hilo13 profile image
Hilo13β€’ in reply toJmiah717

good luck to you too

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