Visit went well although hard to hear the consultant say I now have high risk with poor prognosis cll due to TP53 and unmutated, I was given two options- obinutuzumab plus venetoclax or acalabrutinib , was given booklets on both and go back in 8 weeks to give my choice although Consultants advise was leaning toward O/b as to keep acalabrutinib for when I relapsed which he thought could be within 2/3 years. Was also advised to stay under UCHL due to high risk and wbc practically doubled in 4 months , all very scary ,I have been reading past posts but any advise would be appreciated, also although I am in London the hospital is a 20 minute tube journey , would this be possible while on treatment? Was told that for the first 6/8 weeks I Might have to go 3 times a week , another question,told to get all my vaccinations up to date , has anyone paid to have to shingrex vaccine, , a clinic in London does it for £500 ,feeling very overwhelmed but putting a brave face for family xxx
UPDATE-visit to UCHL: Visit went well although... - CLL Support
UPDATE-visit to UCHL
Oh sorry it’s all very complicated and being given choices. As I am on Ibrutinib I am not qualified to comment on other treatments but I am also TP53 and three years into treatment and feel fine 🤞
The NHS are now offering Shingrex to the over 70’s. I am not sure how rigidly that is adhered to, but perhaps ask your surgery. I am on Aciclovir and just two more pills a day.
Sorry to be a downer but I do hear a number of people on the tube are not wearing masks. Would a bus be too long.
Good luck with the choice and treatment.
Colette
Thanks for a head up on Shingix being available on the NHS, shall check with my GP as that is one jab I definitely would like to have.Hopefully 9876 can have it without paying due to the CLL.
Bubnojay.
It’s very new and only started yesterday to be approved by the NHS.
Is there the chance to have repeat shingrix on nhs ? I understood that it wanes after three years when I had mine at the beginning of the year...
Heard back from Gp , they have agreed to give me shingrex but need a letter from UCHL first to say I need it ,so first thing Monday I will be phoning the nurse and asking x🤞
Thank you 9876 I shall email my specialist nurse tomorrow so it will be in her Monday mailbox, she is a gem for sorting out things. My GP always refers to them if I say I need it due to my CLL, maybe they would even do it at the hospital. \\i will let you know.
Good luck with your treatment,
Bubnojay
Thank you Colette , I have filled in a e consult to my GP with the new guidelines on shingrex and have asked for the vaccine after your message, will await the response with baited breath ,fingers crossed 🤞
My wife was contacted by our GP practice and offered the shingles vaccination (she is over 70) but because it is a live vaccine, I was excluded so she is protected and I am not.
Depending on your age ? Shingrex is now available on the NHS and it’s not live. The age band currently is 70-80 I believe.Colette
I'm older than she is (only by a year) but was not offered it because of the CLL
But you can now access the Shingrex . I am going to stick with Aciclovir prophylactic every day as there seem to be enough vaccines with booster and flu for my brain to cope with for now.Colette
My consultant is putting me on Aciclovir. She said she wouldnt prescribe Shingrix because it wouldnt give me enough protection. Cll and Ibrutinib would lower the cover.My Husband didnt have the live jab incase he gave it to me. Maybe he can have Shingrix, Anne uk
Thanks Anne,
That’s a good idea.
I am not on the Flair trial but I know there is a higher incident rate of people on Ibrutinib getting shingles so I asked to be put on a prophylactic prescription for Aciclovir. I had a fairly mild case of shingles a few years ago, but that was due to extreme stress. The flat upstairs was being renovated by some dreadful ‘cowboys’ and I endured so many problems.
I try to stay calm but it’s difficult at the moment.
Yes that’s a good idea but I don’t think Shingles is transferable ?
Night
Colette x
I personally would take the Acalabrutinib option.
It could give you good long term control rather than the 2-3 years with V+O and it’s a more easily tolerated treatment with no long visits to the hospital for the Venetoclax ramp up and the Obintuzumab infusions with all the risks that entails.
Jackie
That would be my answer too Jackie, although it probably would have taken me seven paragraphs to write.
YES!!! but it would have been so entertaining.
Thanks Jackie , I have just listened to my recording of our meeting and his reasoning for recommending of obintuzumap was that when I relapse on acalabrutinib I then cannot have obintuzumap ?I must admit I am veering towards acalabrutinib as it seems the easier option,how often do you have to be seen when on this drug?
With Acalabrutinib you would probably be seen once a month for the first couple and then 3 -6 months after that. No additional blood tests or hospital stays.
With the venetoclax + Obintuzumab (V+O) treatment you would be seen three times a week during the ramp up phase which will last several weeks. You may need overnight stays depending on your blood results, which will be used to detect any signs of potentially serious tumour lysis syndrome.
V+O is much harder on your bone marrow than Acalabrutinib and there may be pauses in Venetoclax for your neutrophils and/or platelets to recover which will make the ramp up period last even longer.
It's true that if you relapse on Acalabrutinib then the next treatment is usually Venetoclax plus Rituximab (not Obintuzumab) but that could be many many years away and who knows what else will be available then.
As your first treatment Acalabrutinib has every chance of controlling your CLL for 6+ years even with poor markers. However, even though the data doesn't available for much longer than that there is reasonable cause for optimism beyond that. It's likely to be many years longer than the V+O treatment even if you achieve U-MRD where no CLL cells can be found in your marrow.
The only possible difficulty with Acalabrutinib is if you are a regular taker of ant-acids but with careful timing of taking your medication that can be overcome.
Let us know what you decide
Jackie
Thanks Jackie ,I do take lanzoprazole for silent reflux so will bear that in mind
All my reflux problems disappeared after I quit eating processed foods and grains 9 years ago.
I am on Acalabrutinib for 5 years now in a Clinical trial. I also took a PPI for reflux which had to stop when I started treatment. It was tough going with reflux at first but I changed my diet (lost 60 lbs - basically Weight Watchers), take famotidine 2x daily (which is not contraindicated with Acalabrutinib), and Tums 2x daily. If I do have something fried or spicy or too much coffee and get reflux, I have used a product (purchased on Amazon) called Orange Burps. That regimen pretty much keeps the reflux in check. It was a hassle finding the right combination to manage the reflux but worth it to stay on Acalabrutinib. I am doing well and hope this partial remission lasts a long time. (Partial remission due to SLL diagnosis and very large lymph nodes at time to treat. Those lymph nodes have scar tissue from getting so large so may never return to "normal" size thus "partial" remission). I echo others in that Acalabrutinib might be easier to take in pandemic times, requiring fewer visits right now. And V+O could be used later, if there are no better options when and if you relapse. Of course, speaking to your OncTeam about that strategy and your concerns is the place to start. All the best you.
Hello, I am reading this post because I am facing the same decision as many. V+O or a BTKi (doctor said Ibrutinib but later I thought to ask why not Acalabrutinib).
I was wondering why you said that upon relapsing on Acalabrutinib, then V+R would probably be offered next, why not Obinutuzumab + Venetoclax?
Thanks!
Look at my profile, I had all the "awful markers". IMO "high risk" means one will likely need treatment at some point, as opposed to being in the 1/3 of the people who never need treatment. There is at least one person here with a 17p del still on Watch & Wait. These are "old" statistical probabilities. The newer agents are changing everything, but there's not enough data yet to publish revised, more optimistic decade-old outcomes. I know it's a shock to hear the "C word" but try to focus on the "Chronic" aspect. Before the new agents, p17/TP53 mutations rarely responded to treatment, which was only older standard chemotherapy regimens. You will see from my profile, which I can pretty much guarantee is "worse" than yours if all you have is TP53, I have had one extremely successful 5 year remission (at a time when remission was not seen for TP53 people), a few treatments that didn't work, and am now on one that again is working. So please try hard not to despair. Chances are, you will die with CLL and not from it.
Please try to take some comfort that even though technically "immune compromised" you still have a functioning immune system. Else you wouldn't have recovered from Covid. And you have been in Watch & Wait for years whereas, say, I needed treatment shortly after diagnosis. It's scary when "time to treat" is approaching, but I bet you will do just fine.
Wow just read your profile ,you certainly have been through a lot , I am so glad I posted , it feels like my head is exploding with all the information so thankful for all the replies x
Hi, good luck with your treatment, was on the tube last week at peak times and was unbelievabley quiet,
Interesting info coming out here. Firstly, I am on Acalabrutinib, 11q and unmutated and it is (for most) a very easy treatment that works slower than V & O but amazingly quickly when you measure it against how long the disease generally takes to reach treatment point . A matter of months to get bloods under control or in partial remission. Secondly, I’m about to hijack your post! I am meant to add Obinutuzumab to my Acalabrutinib soon. This is to hopefully push my CLL into remission for a longer time. Was this option given to you? Also, I didn’t know that V & O wasn’t available after Acalabrutinib. Why? Is this only if Obinutuzumab is added? If it’s taken as a mono therapy can you have V & O after? It’s a question I haven’t even thought to raise so thank you. When I started treatment Acalabrutinib was suggested over V & O as unmutated - and 11q in particular - respond well to Acalabrutinib. The V &O is showing similar positive, long term responses for mutated as FCR. It works well for unmutated too but BTK inhibitors don’t benefit mutated patients in the same way as V&O. If that makes sense! Should I not add the Obinutuzumab if I want to keep the V & O in the bag?
Glad you have hijacked,I also don’t understand why I cannot have V&O in the bag for after acalabrutinib ,is this your first treatment and was you given the choice of V&O as well , adding O to acalabrutinib wasn’t suggested as a option
Ob. plus Ven. is not NICE approved as a second-line treatment for CLL on the NHS. The combination for second-line would currently be Venetoclax and Rituximab but this could change.
I think you have been given very good advice by Jackie and others.. I would also add that Acalabrutinib may not be so effective as a second-line treatment.
As regards travelling. I think a very valid concern of yours given the likely increase in Flu and Covid there could be this winter. I actually attended UCH on the same day as you (late afternoon) and the Victoria line was extremely packed on the way back home. And tube passenger numbers are increasing.
I was advised to have an ECG done before starting Acalabrutinib because of cardiac concerns with the drug (these are highlighted in AstraZeneca's patient leaflet).
Antony
I was given the option of V&O but recommended Acalabrutinib plus Obinutuzamab based on my mutated and 11q status. My consultant said V&O was looking to be as good as FCR for mutated (though data too early to be sure) but not much in it for unmutated. A&O he felt was my best personal option. I think he did say V&O was there for later which is why I was surprised to hear it wasn’t. Or maybe I am making that bit up!
I think this is like a game of snakes and ladders.I am currently in Ibrutinib as second line treatment ( Chlorambucil in the distant past ) and I asked my Consultant what was plan B ? Could I move to Acalabrutinib, he said no it would be Venetoclax.
All very confusing. I am just keeping my head down and taking a tablet every morning and being very grateful.
Colette
Transport wise - is it possible for you to use patient transport? They have been brilliant for me.
When on treatment I would think public transport is not a good option.
This may not be your area but could be a starting point
scas.nhs.uk/our-services/no...
Thank you , will look into it ,have priced up taxis and it is roughly £50 each way due to congestion charge etc
You would definitely be eligible. Just need to find the right area for your location and contact them. Usually you can only book transport max 3 days in advance.
Terrific service. The cars often have a partition between driver and passenger in they back and face masks are worn.
Often volunteer drivers.
I have been on O+V since feb this year ..20mins is perfectly doable ..I have a 70mile round trip which is about anhour each way for us and thats been fine ..the treatment was carefully monitored at first because almost everyone has a reaction on the first few Obinutumazab doses but after that the infusions take 6- 8 hours Venetoclax is tableta which also ramp up gradually I am still a little nauseous sometimes after taking them but nothing to make me want to stop taking them and I have tablets to take if it is problematic. The ramp up for Venetoclax was monitored by blood test at a distance usually so no trip necessary. I wasnt given a choice of treatment but told once ther is a remission there are other fall back treatments ..Im not TP53.. you might like to take a taxi home after the firstt few Obiutumazab dos as I did find it very tiring
Hello tough consultation and some tough readingand decision making - you will be ok and you have choices. That's how I see itx I'm currently on Venetoclax and just starting my 4th week. I understand your concerns about travel and having to be in hospital 3 days. I spoke to my consultant and made a plan - as I am semi isolating and waiting around in hospital was not in my best interests. After the second week I arranged to have bloods taken at my local doctors, went to see consultants on Wednesday and picked up medication and blood form. This meant I could administer medication safely in my own home. This change came about as I am doing well on the medication and my bloods are looking good. I suggested the plan and talked it through. Also, I drove myself to the hospital after the first day. Everyone is different but I decided what I needed and got the help from my consultants.
I wish you well x
Julia, we were in touch a few weeks ago when you were concerned about having to attend UCLH. I can only restate my faith in their CLL team, but Jackie makes several very good points, ie that Acalabrutinib could give you good long term control rather than the 2-3 years with V+O and it’s a more easily tolerated treatment with no long visits to the hospital or overnight stays for the Venetoclax ramp up and the Obintuzumab infusions with all the risks that entails.
My advice would be to discuss your concerns about travel, which are fully justified, with the people at UCLH, my experience is that they are very open to being questioned, and ask what is so different about Obintuzumab from Rituximab, which under today's NHS guidelines would be offerred with venetoclax should /when the Acalabrutinib become ineffective.
I am fortunate that my wife drives me to UCLH, drops me on the corner of Euston Road and Hampstead Road just outside the congestion zone (5 min walk to the Macmillan Cancer Centre) and usually enjoys the beauty of Regents Park while I'm being seen/tested etc. I won't use the buses or tube.
Roger
Thank you roger ,I will look into being dropped off and then walking 👍🏻
My husband is unmutated and TP 53 and has been on ibrutinib as first and only treatment for over seven years. Doing fine.
I would opt for the acalabrutinib. I had several treatments and a splenectomy prior to starting acalabrutinib. Every fall I needed new treatment. Now on acalabrutinib my blood is normal with the exception of lower IGG levels. Lymph nodes shrunk to normal rapidly. ACA is now first line therapy in the US, with most patients experiencing excellent results. Do get the Shingrix vax asap. I had a horrible case of shingles after my spleen was removed and still have chronic pain four years later.
Thank you for answering,i am leaning more towards acalabrutinib x
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