Hi folks,I’m lying here in hospital UK where I’ve been for the last 8 days,just looking for a few pointers.A couple of months ago my glands were out of control,the size of half a pear,as opposed to the little hazelnuts I’m used to seeing occasionally.They completely filled my neck,jawline..small ones pressing into nerves on the back of my head into my collarbone and after a PET scan found pressing on my diaphragm causing low SATS of 88.Thankfully I was able to be stabilised in the hospital.Taken off Ibrutinib,fed antibiotics,steroid's, oxygen and morphine for pain relief.The glands were a gradual build up,put down to just fighting an infection until I was admitted.So plan B was instigated a couple of days ago..now on to the Venetoclax and Rituximab regime with the latter being introduced once I’m upto full strength on the Venetoclax.
Has anyone experienced similar? I know there would be a shelf life for the Ibrutinib which I’ve taken since 2019 and the majority of that time on the lowest dosage which seemed to be keeping my bloods in acceptable range. Still it’s been quite a shock,was I getting too complacent? Any advice would be appreciated. Thanks Nick
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Nickos66
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If you got 3-4 years of control out of ibrutinib, that's pretty good IMO. Hopefully the V&R (which most likely will be a time limited treatment) will get you into a remission, your glands back down. Sorry to hear swollen nodes are causing such awful problems!
I haven't done your treatments in that order, but I have done a number of them. I am now at a point where I am hoping for at least 2 years in between treatments, because that means I can probably just repeat the same treatment, the CLL won't become drug resistant like happened to you. My understanding is that the trend nowadays is to try to tamp it down into remission, then stop for a bit, so the CLL doesn't become resistant and the same treatment can be considered.
Yes hi there,when I was introduced to Ibrutinib the flair trial was ongoing and of course they are now mixing and matching with great results! I think it just hit home how horrendous this disease can be when it’s mutated and out of control.
hi Nick, I assume you’re born in 66? I am! I e had a similar journey to you having been diagnosed in 08 I had fcr in ‘10 and an immunotherapy in ‘13 before going on to Ibrutinib in ‘14 until it lost its potency and I moved to Vclax in Nov last year. No R’mab however and on Vclax until it doesn’t work I guess. Hopefully that won’t be for a few years! As you’re in the UK I wonder why you’re get the V&R combo? I guess we’re all different and our consultants know what’s best for the individual. I wish you the very best and look forward to seeing your progress.
Hi Law…yeah I’m a 66er and had 3 various chemo regimes since diagnosed in 2005 with non Hodgkin s that mutated to CLL.. I am TP53 mutated,the expectancy of Venetoclax is 2 years maximum,but at the moment I am registered at Freemans Newcastle for CAR-T or bone marrow..the plan C really …on another note,has anyone ever had glandular fever before being diagnosed with CLL? I had a really bad bout of it a couple of years prior to the CLL diagnosis.
Interesting question. Before I got a correct diagnosis I went through a virus, mumps and glandular fever guessing before a blood test showed my CLL diagnosis, but when I had my first appointment with haematology my CNS also thought I may have had glandular fever. Apart from looking like a chipmunk I was absolutely exhausted.
Good luck with your next treatment. I am hoping I can stay on Ibrutinib for some time.
My wife is 17p and Tp53 with complex karyotype (mutated). She was on Imbuvica for a few months and then Venetoclax. Wow!! A real game changer she went into normal blood mode in 4 weeks on Venetoclax and stayed on it for 11 months. Then in clinical remission they took her off of all treatments for 3 and a half years until she began to show progression of CLL. They will probably put her back on Ventoclax someday, but she has been on Acalabrutinib for a year and a half and doing well at half the dose.
Sending you support Nickos66. The transition points in treatment/disease progression can be tough - sorry your lymph nodes are being naughty (mine caused me pain before treatment, too). I have not had your specific treatments but know from others how powerful Venetoclax is - and that should "right your ship" in a short time. And they've hit you with everything for the infection so that should be clearing in time. Wishing you a speedy recovery and release from the hospital, and hope at least the pudding is good!😉
#-4 years on Ibrutinib and the CLL was controlled ?! Consider yourself lucky. I relapsed after 20 months. Finishing my 2 years of Venetoclax. Started with smaller doses and Rituximab 2 years ago. I only have like 14 days to go to complete the last bottle. I am pretty anxious about that since I have del 17 /TP 53. Well, there is no other way around, but Venetoclax was a perfect medication for me.
How can any of us consider ourselves lucky? I read somewhere once that I should consider myself fortunate that it wasn’t acute,this one is a slow torture! I’m a strong person both physically and mentally but this is testing me.It feels like a death row sentence and the appeals are just dragging the end result out. I’m not being negative but more pragmatic about my situation and I wish you the very best in your future that a treatment can be found that works for you.
Yes, relapsing on Ibrutinib was awful. I had generalized edema, especially in my lower extremities, to the point that I could only wear flip-flops in the winter in Canada when going out for a doctor's appointment. My nodes always blow up in my abdominal cavity and infiltration of bone marrow. A lot of abdominal pains and one node dangerously close to my aorta. As I said, I did very well on Venetoclax. I hope you will too.
The longer one stays and does well on the medication, one has a potentially longer survival time. There are only so many meds, so many combinations of meds. If one relapses after a shorter time, soon one will be out of choices, unless, of course, the scientists will discover a new drug. So yes, I consider myself lucky, fortunate, whatever you want to call it that I was able to take a recommended 2-year-long treatment of Venetoclax.
If you've got to get cancer, it seems CLL is one of the more benign. Every time I read about a cancer patient having seriously disfiguring or life changing surgery I'm thankful I don't have a solid tumour cancer. Then there's my mother's comment that my grandmother had to watch grandfather being buried one bit at time (in the late 1950's). Grandmother was a hospital matron before she married in the 1920's.
Yes for every one of those there's the flip side. Surgery, short chemo and/or radiation and they are cured with complete remission for life.
When it comes to winning bets with CLL, to get lucky it's like you have win 4 or 5 or more coin flips in a row to hit median for the treatment each time.
Ahh coin flips! I just had a flashback of going to Vegas last March,I’m not a gambler maybe play the odd game of Blackjack but far better watching ordinary folk hit a jackpot on the machines.That will be on Venetoclax hopefully 🤞
It's okay to go on the V & R. I was on imbruvicaibrutinib to reduce wbc about 1 1/2 yr before it failed, then went on venetoclax/venclexta plus rituximab and am now almost 11 months off of any meds. Still waiting to see how long remission lasts. My doctor says I can go back on V in the future if meds are needed again.
Hi, Nick I too am on FLAIR Trial and on Ibrutinib. Tomorrow will be my 5th anniversary of starting Ibrutinib. I am 11p deleted and unmutated. My swollend luymphs went down within 4 days and have stayed down. My bloods took two years for all to be normal and bone marrow shows less than o,5% CLL. I hope my appointment with specialist tomorrow will show all is still well and I continue on. I understand at some time the drug may fail but I know some patients have been on ibrutinib for even longer. lets hope thwey continue to bring out more treatments for us to use as and when needed. Good luck to you.
Honestly Sparky,Ibrutinib has been a life giver for the length of time I’ve taken it,to the point I wouldn’t even think about it for months on end.Amazing work these folk are doing.Yet never recognised properly for their work!
And to cap it all there is a Covid Outbreak on the Ward,not that I’ve ventured out of my room.It’s strange over here in the UK,I only noticed all staff were coming in masked up and asked the question.I’m immunocompromised and no one thought to tell me what’s going on.
Hi Nick. I have been on ibrutinib since 2019 and it's looking like it has started to become less effective. I am seeing my haematologist tomorrow to discuss the way forward. Best wishes.
Hi. My Haematologist said some months ago that the IB appeared to have run its course due to the blood tests that I had. Ha also stated that he wanted to ring every last drop out of it. I had 4 cycles of Rituximab last month which I was told that the leukemia wasn't responding to.
I had a course of that Rituximab in a combination with Fludarabine and Cyclophosphamide.It was a horrible regime like being injected with a 24hr flu virus but it got me 6 years remission .Ha wow what a bloody life 😂😂😂 Hope it kicks in Jack,be strong!
Interesting reading about the waning of effectiveness of Ibrutinib. I am so sorry it stopped working for you. I have been on it for 6 yrs last month. This is a disease where you find yourself waiting for the next shoe to drop. Please keep us updated on your condition.
I am doing well and on my maintenance Ibrutinib, but hold my breath every 3 months when my blood work is done. But it keeps me from getting overconfident! Hope everything goes well. Keep us updated!
Well I’ve just started week 2 and doubled up to 50mg dosage on the Venetoclax.Back on steroids as the glands are flaring up around my neck again.My consultant was moderately disappointed that my white count had started to climb again, @ 163 and platelets hanging about @19 .Hopefully the steroids will take control of the situation.Still in hospital for at least another few days then maybe home ,haven’t seen my dogs for 2 weeks now and apparently Bodie our Irish Terrier has taken over the role of Alpha male in the household 😂
Update today….So,my consultant not so happy about the results of 1 week on the Venetoclax low dose,my WC count rising to 160/Platelets at 18.He got in touch with the Oncology team at Freemans in Newcastle who has advised him to try mixing the Venetoclax with the Ibrutinib I was taking and also upping my steroids as well.50mg Venetoclax (rising weekly) 140mg Ibrutinib.I’m doing ok really,lack of good sleep but eating and drinking well and I know I’m better off in here while things get sorted out. It’s lucky that I hadn’t sent my stash of Ibrutinib back,which was supposed to be collected tomorrow.
This doesn't make sense to me, in that as lymph nodes dump out CLL cells the blood counts are expected to rise. So unless your nodes/spleen are also increasing, this is somewhat expected IMO. Unless it's the platelets only your doc is unhappy about . IDK if the UK ever modifies protocols, perhaps the rituximab may help with platelets? Or a platelet infusion? Instead of waiting for full venetoclax ramp up, so you can get off the steroids? I know nothing about the UK healthcare system, so if I am suggesting something ridiculous, apologies.
Venetoclax + Ibrutinib is only approved for 1st line in UK. Steroids aren't a normal part of Ven protocols except when having an IV of mAb but were common for chemo. So Nickos's already off any normal protocol. My perception is that so long as all the drugs are approved by NICE the doctor will simply have to fill out a form to state why he's gone off normal protocols, "tumour flare".
Hi Skyshark,can you explain in simple terms what you think has happened to me please and why the Cancer team would consider it ok to use a combination of Venetoclax and Ibrutinib even though the Ibrutinib was deemed to have failed. Regards Nick
There are reports of a synergy between the drugs that restores some response to BTKi even with BTKi resistant mutations. The numbers in the study are very limited and all were heavily pretreated.
Hi folks,just a small update on my treatment with Venetoclax & Ibrutinib after my initial Ibrutinib treatment stopped working.It’s day 18 and still in hospital,I’m stable and glands are finally shrinking back,so steroids are being reduced,pain relief reduced.Its now week 3 and I’m upto 100mg Venetoclax 140mg Ibrutinib.My platelet count has been quite low hovering around 10,so I am being topped up with platelet transfusions as and when they are required.WC count is around 40/50 from an initial 220.So infection is reducing.Happy to still be here in the hospital so I have access to any side treatments should I require them.I was given proactive treatment for tumur lysis over the weekend and my consultant is very happy with my kidney function but I have also lost weight,around 7kg even though I’m eating like a horse. Best Regards Nick
Hi folks,small update.I finally succumbed to the Covid outbreak on the Ward I am on this morning.Even though I’m in an isolation room and haven’t ventured out in the last 25 days of ongoing treatment.As soon as I tested positive I asked about an antiviral treatment and have been given Sotrovimab.My bloods are still up and down as they adjust to the Venetoclax which is doubled up again to 200mg dosage tomorrow.Low platelets @ 11 Low Haemoglobin at 79 has resulted in transfusions and low neutrophils today requiring an injection of Filgrastim. One thing I’ve been grateful for is my morphine intake has been drastically reduced for nerve pain caused by swollen glands pressing on them.The most painful one was like being speared with a javelin.Anyways I enquired about replacing the morphine with a nerve patch,which the staff agreed to and I managed to sleep through the night.I must say it’s been quite an interesting journey so far,I was in total despair when I was first admitted,now I can see a bit of light at the end of the tunnel. Best regards Nick.
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