Thank you & stay positive
3 Likes
Hi Annie78
If your happy with your white hair, leave it as it is ! My natural colour is a horrible gunmetal grey & I prefer it blond. I’ve been having my hair coloured for over 30 years at the hairdresser’s (wouldn’t colour it myself).
Good luck
3 Likes
Hi @Dusty your grandchildren sound lovely and as you say you can spoil them and give them back.
Oh I bet you are looking forward to getting your hair coloured, I am lucky as I am fine blond/white haired and I have been chopping away at my hair for the last 20 mths.
My Chronic lymphocytic leukaemia (CLL) is fairly stable, the blood counts do fluctuate though, and I am very lucky to have been on watch and wait since accidentally diagnosed. After 17/18 years I still get anxious before, during and after all medical appointments. I am not going to let Chronic lymphocytic leukaemia (CLL) define me or rule my life.
What a lovely idea to take the hospital staff in the day unit a present.
Keep enjoying life and look after yourself.
3 Likes
Hi Est30,
I started this treatment last April 17th. Apart from one reaction during my first infusion I have had no problems with the obinotuzumab at all. I started with the normal ramp up with venetaclax from 20mg to 400mg daily, the only drawback is the multiple blood tests required during the month long ramp up period I had 3 per week just to check for side effects. I have tolerated the drug very well and have had no side effects other than a bit of sunburn initially (I hadn’t read the full leaflet that comes with the drug and it did warn about this and advised using at least factor 30 suncream). My consultant is very pleased with my progress which has taken my blood count back to almost normal. I finish the 12 months treatment at the end of March and looking forward to a normal life.
Regards Mickbrit
3 Likes
Wow, that’s a brilliant response to the treatment! Must be a great feeling to see the end in sight! Is twelve months thats required of the treatment for the full impact?
1 Like
How was your birthday @Dusty, and the hairdressers?
1 Like
Yes the full course of treatment is 6 monthly infusions of obinotuzumab and 49 weeks of venetoclax. Obviously as it is a relatively new treatment prognosis only covers the last 3 years. I have read the most patients have no disease progression after 3 years so that is very encouraging for me
Mickbrit
4 Likes
That’s good news @Mickbrit look after yourself and keep posting
2 Likes
Hi Nichola75
I had a nice quiet day out & a meal with my hubby. Our house is very busy at the moment as my son his wife, 2 children (Jamie 9 & Mollie 6) & Roxy the cocker spaniel have been living with us since mid Oct. Their having a large extension built on the back of their house & all the downstairs rooms tiled in the same tiles. There’s no kitchen or utility room & all their downstairs furniture is being stored in our double garage. Hubby said I told you we should have down sized lol ! I’ve loved having them all.
2 Likes
Nichola75
Having my hair coloured (after 9 months) & cut was the icing on the cake so as to speak, felt like a new woman. The gunmetal grey look didn’t do my any favours !
1 Like
Bet it made you look and feel like a million dollars!
1 Like
I bet you’ll really miss them when they are gone or will the peace and quiet be welcomed? 
1 Like
I too have followed the same treatment as you… The only drawback seems to be that obinutumazab inhibits any antibody production for at least 12 months after finishing it
2 Likes
Hi @Dusty when I used to have people staying (pre Covid) I realised what a quiet routine my husband and I had got into.
I bet your catering bill has somewhat increased and you will miss them when they go back to their extended home. I expect your hubby will be pleased to get his garage back !!!
How wonderful to get your hair cut and coloured after so long, I bet you do feel like a new woman and look fabulous.
1 Like
Yes and it ruins your immunity to covid even though fully vaxxed probably only 30% protection at best
2 Likes
Hi @Mickbrit if it is 30%, that sure is better than nothing.
Look after yourself
3 Likes
Hi, I have been on active monitoring for 9 years and have just started V&O this week. The first dose of O is given over two days 100ml day 1 900ml day two. No reaction so far and feeling good. Next week larger dose on one day and repeat the following week which I presume will be a full dose. I have a great deal of confidence in the team and will keep you posted. Good luck and take care.
4 Likes
Hi @Lynne57 it is great that you have found us and a warm welcome.
So scary, unknown times for you and really glad you are feeling good.
This is the right place to share how it is for you and I look forward to hearing more about you.
We are a supportive forum and if you would like to talk to someone the Blood Cancer UK is also there for you.
Look after yourself and keep posting.
1 Like
Hi everyone, I started this original post and I’m really sorry not to have been back on the thread very much to update on how I was getting on. Great to hear from others that you too have been doing well on the Venetoclax and Obinutuzumab (never gets easier spelling those!).
It sounds like my experience has been similar. I had a bumpy first month, which was May 2021, and the first couple of treatments of Obinutuzumab (as an in-patient) were the most dramatic, with some vomiting and temperatures spiking and whatnot. I also was very unlucky to get neutropenic sepsis during my first month of treatment so had a horrible rush to A&E and a week or so in a local hospital (not my usual haematology one) while they got that under control. It’s a known risk when you start treatment, I guess I was just unlucky.
Very quickly though my cancer numbers dropped dramatically, and throughout the rest of the treatment I’ve really been very well. I spent quite a lot of time in and out of hospital for the first few months as my dosage was ramped up on Venetoclax but didn’t have any major reactions after the first couple of doses. Finished the obinutuzumab in September and have just been having Venetoclax 400mg at home daily since.
No major side effects really although I do have a bit of nausea as @Annie78 said above - likewise I can’t seem to find a time of day to take the tablets that makes a difference! But it’s not too bad in my case.
I do have an issue with tiredness and need to have a rest every afternoon, I really struggle to cope with a full day on the go, though I have plenty of energy in the mornings and evenings. I was fine before I started treatment (only just starting to feel unwell from the cancer when I began) so I do think this is a side effect of the tablets. And I feel as if I am quite dehydrated - always drinking water madly! But these are really not major issues and luckily I have a really understanding and supportive employer and my family are brilliant.
I’m now into the home straight as I’ve been prescribed my last bunch of tablets - can’t believe the end is in sight! Who knows what the future will hold after this but I am feeling upbeat. Because this is such a relatively new treatment they don’t really know what the long term outcomes are yet, but seemingly it’s pretty positive so far for people who have been through the treatment already.
So to those about to embark I would say don’t be too daunted! By far the most difficult aspect of my treatment has been the fact that it further depresses my immunity in the middle of a pandemic, thus making EVERYTHING difficult and stressful this year while i am trying desperately to avoid Covid. The medication itself has been easy by comparison!
5 Likes
I had no antibodies after 3x jabs… Which is what I had expected from consultants explainations but O+V is a very good treatment for Chronic lymphocytic leukaemia (CLL) and hopefully Covid will pass and our immune systems will recover a bit after the 12 months gap after the last Obinutumazab treatment… Fingers crossed
2 Likes