For those who have followed my story, apparently the Ibrutinib has failed after ~2.5 years even though the blood looked good.
A random trip to the ER for something totally unrelated and all hell broke loose!
So now, I am 99% sure in a few weeks (a month?) I will be starting Venetoclax and rituxinib.
On Thursday I will have a biopsy to remove a lymph node under the armpit, just to confirm I don’t have richter’s transformation (the team of oncologists that my oncologist discussed my case with are all pretty sure I don’t, but want to be sure and see what’s going on with this lymph node)
I’m just confused about work/timing etc. I know unlike Ibrutinib this is a ramp up drug, so I guess I won’t have chemo for ~5 weeks AFTER I start taking it?
Then it’s 1x a week for 4-5 weeks?
Anyone been on it and know what side effects are?
Any advice is appreciated, this is treatment #3, and not very many years so I’m pretty nervous.
Thank you as always for your support!
Rebecca
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rlyndecker
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Sorry to hear that ibrutinib has failed to give you the long term results you required.
Venetoclax and Rituximab have just been approved here in the UK for relapsed or refractory cll and this was based upon tremendous results in trials and front line treatment experience.
Actually you mention “chemo” from what I understand neither of the two drugs you mention are actually chemo. Both are targeted therapies.
Sure they have side effects like all drugs and Venetoclax particularly needs to be monitored very closely in the intitial stages due the tremendous effect it has and the risk of tumour lysis syndrome. However this apart it has been proven a very effective therapy with fabulous results.
I do hope your heamotology medics are correct in diagnosis in respect of NOT having Richters and that once this initial shock is passed things move on positively.
I was on a combination of Venetoclax and Rituximab (Murano Study) and had no side-effects at all. The only thing, Geoff mentioned as well, was that I had to stay in hospital for 3 days in the first two weeks because of the TLS-risk.
Apart from that I didn't have any problems to go to work. And the results of these medicins are marvellous.
Venetoclax is a pill taken every day, and the dose is increased once per week for 5 weeks.
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On day 1 your blood will be tested and you will start at 20mg and then your blood will be tested several times in the first 24 hours of that dose. On day 7 your blood will be tested then the dose in increased to 50 mg and your blood will be tested several times. If your nodes are large or your ALC is high you may be in the hospital for day 1 and day 7.
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On day 14 your blood will be tested and your dose increased to 100 mg, with a few tests over the next 24 hours, and so on at day 21 an increase to 200 mg with blood tests, and then on day 28 tests before and after the dose is increased to 400mg.
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After those 5 weeks then Rituxan infusions will start in the hospital or clinic once each month for the next 6 months.
Thank you for the link and guide to VR, very helpful. My reason for replying to you is that I have to make a final decision next week, Ibrutinib or VR. my consultant is the well respected George Follows and we are both veering towards VR on the basis of my very short remission on my previous treatment which was completed March 2018. So, I think the view is let’s hit it hard in the hope of a decent remission.
Dr Follows mentioned that I would need to visit the hospital for three days each week of the five week ramp up period and then introduce Rituximab. We didn’t get time to discuss the logistics in any depth, he has an extremely busy clinic.
If i’m reading your guide correctly I should only need to be at the hospital for two days per week?
I’m having a little bit of a wobble as the hospital is an 120 mile round trip and I need to get support in place for ‘childcare’, actually he’s a chocolate Labrador but he’s my baby!
Unfortunately i’m not able to have treatment at my local hospital as they don’t have the experience which I understand and anyway I don’t want to lose Dr Follows!!
I won’t be on a trial, I understand trial protocol is that you do stay in hospital for monitoring during the ramp up.
I’m one of those people who need to have all their ducks in a row and from that point of view I need to know a lot more about the actual time frames before signing on the dotted line as I will be relying on support for transport, doggy care etc.
I fully appreciate that you may not be able to answer my question as you may do things differently in the US but obviously I would be grateful for any pointers you can give.
Thank you for reading my post and best wishes to you.
The recommendations revolve around getting your blood tested before you take the new or increased dose, and then multiple times in the next 24 hours. The tests are very straight forward- (Potassium, calcium, creatinine, uric acid and phosphorus). The important skills is getting the blood tested and results quickly (e.g.: in one hour), and then having a medical person interpret the test and know what to do if the results are high.
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In my case it was 30 hours in the hospital before the first two doses, because of the time to check me in, take a blood sample, get the blood tests completed, get the doctor or nurse to interpret the test and then have the pills given to me, then test 2 to 4 times over the next 24 hours and get the blood test interpreted each time. And finally go through all the procedures to have me discharged. The biggest time waste was the time between the different departments in the hospital and having them communicate with each other.
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After the first two, we did a similar drill with me in the waiting room of the Hem/Onc clinic for 8-10 hours, using the phlebotomist that normally draw blood for office visits, and having the doctor or Physician's assistant interpret the test and communicate with me by mobile phone. I had to return to the hospital the day after each dose increase for the 24 hour test, and wait until that test was read/interpreted until I could return home.
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So depending on how much tumor burden (translates to : how big are your lymph nodes and spleen). They may decide to have you in the hospital for the 20 mg and 50 mg doses on weeks one and two. But after that you may be able to do this as an outpatient, but you still need to have the blood drawn, tested and the results reported very quickly.
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If your local hospital can draw the blood and run the test quickly and have a doctor or nurse interpret the tests- even if from a different location , you might be able to do some of the testing nearer to home.
Thank you so much for coming back so quickly Len, much appreciated. Sounds quite onerous but I guess you have to remember it’s only 5 weeks and then presumably the Rituximab is every 4 weeks. Unfortunately my closest hospital, 20 miles and Cambridge are two separate trusts and therefore their systems don’t talk to each other so I guess I’ll have to travel. Were you able to drive yourself or is that not a risk worth taking
Thank you for the link, that’s my bedtime reading sorted!
I think i’m still classified as SLL, nodes in my neck are quite unsightly but apparently as at 4 weeks ago my spleen was ok. Bloods are going in the wrong direction quite quickly and i’ve been on antibiotics in one shape or form since Xmas, infection after infection, even with immunoglobulin infusions. All good fun (not).
Anyway I’ll look on the bright side, this beast of a drug IS GOING TO WORK.
Thanks again for your help Len, enjoy your weekend
Since I live in Metro NY, driving is crazy anytime, so I did subways to the hospital- it's less than 7 miles but takes 45 minutes by subway - 75 minutes by car.
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Driving for the Venetoclax ramp up should not be a problem, I had absolutely no side effects, and even the TLS that you are being tested for has no symptoms unless the minerals get so high they damage your organs & heart (Potassium, calcium, creatinine, uric acid and phosphorus).
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But driving for Rituxan injections will be. The pre-treatments they give ( Benadryl & Steroids ) will make you a little loopy and my hospital insisted that I not drive for at least 8 hours after.
Cheers Len, hopefully i’ll be tanked up with Allopurinol so no TLS!
Fully understand no driving when it’s time for Rituximab, I certainly couldn’t have driven after obinutuzumab, I was well away with the fairies and couldn’t stop eating.
Thanks again
Shooey
You said bloods were good then all H broke loose can I ask what triggered them to start a different regimen?
I went to the emergency room because I thought I had appendicitis they ended up doing a ct-saw how big the lymph nodes were, called the on call oncologist and then my oncologist discovered that the Ibrutinib wasn’t working. He ordered a pet/ct-that’s when he figured out which lymph node to cut out.
I was on ibrutinib for about three years until it became ineffective (ALC up, platelets down). Since it was caught early with no lymph node involvement I was able to switch to venetoclax without hospitalization, only bloodwork at each increase in dosage. For the last fifteen months it has worked very well with no side effects. I am not aware of any study comparing venetoclax/rituximab with venetoclax monotherapy as there have been with ibrutinib. I asked my hematologists about adding rituximab and his opinion was "more drugs, more possibility of side effects. Stick with success, we can always add it later." Good luck with your treatments.
Side effects for Venetclax generally are not too bad. Mostly stomach and some fatigue but over all it is a pretty clean drug from my experience. They start with 20 mg, then 50 mg, then 100, mg , 200, then 400 mg as far as I remember.
If you can over lap with Imbruvica a bit it is good.
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Surviving Covid19
chlorambucil + obinutuzumba
New Clinical Trial of Ibrutinib + Venetoclax for people relapsing on Ibrutinib 
Now Hodgkin Lymphoma 
Venetoclax
