Hi there everyone, Hope everyone is doing well. Happy New Year!
I am writing this post because my dad just started ibrutinib on December 19 2018 and has went for two weekly blood tests, and each time his white blood count levels have gone down ( we were told it would skyrocket.) His WBC was at 406 in mid October when we first found out it was CLL. We only found out it was CLL mutated in November.
Yesterday blood tests came back and his WBC was at 13 and his hemo went down from 103 to 98 and his antibodies are lowered (so more likely to get sick) i forget the word used, sorry about that, always soo much information.
I was just wondering if anyone else on here has had this reaction to ibrutinib. Our doctor is Dr. James Johnston in Winnipeg, Canada, and he is a CLL specialists and he said he hadn't seen this reaction and was going to talk with his colleagues about this reaction and get back to us.
Thanks in advance and all the best!
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aj33
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I have met Dr. Johnston on a number of occasions, he is one of Canada's leading CLL specialist.
Your father is in very good hands...
I suspect his neutrophils have dropped substantially, since the white blood cell count [WBC] is made up of them primarily... better figures to look at would be the absolute lymphocyte count [ALC] and absolute neutrophil count [ANC] , they will give a clearer picture...
Please let the group here know what Dr. Johnston says...
Cold in WinterPeg? We are balmy in Ottawa... must be all the government hot air.. or just nuts... 😃
He really does seem to be a great doctor. He told us that he had not seen this before and that he was going to meet with some other colleagues on Tuesday.. so just waiting right now...
His wbc went from 406k to 13k in a month on ibrutinib? That seems unusual. My wbc around 220k a year ago when I started ibrutinb. Two months ago it was 40k. My drop has been very gradual.
The drop in hemoglobin you report is negligible, well within any testing variable. Basically it’s unchanged.
Your dad might well be more prone to infections. In the long run, ibrutinib is believed to restore the immune system to some extent.
Other than the impressive drop in wbc, nothing else you wrote sounded odd or unusual.
Yes the number on his chart said 406 when we found out. Then it slowly was going down with Prednisone and also had a blood transfusion to raise his hemo up. Which helped. He had like zero energy for the last little while.
To me it's unusual. My consultant here in the UK said my WBC would go right up but would settle within 6 months when on Ibrutinib. As he predicted that happened. The effect on my symptoms was dramatic and has improved my quality of life. The improvement began within 2 weeks. I'm now in month 4 and remain improved.
Whilst you are looking at the scientific elements, hopefully outwardly your Dad's symptoms have improved.
Hopefully the consultant is looking in to possible reasons for this effect. It will be interesting to hear any conclusions.
Good luck Mick
I'm at Memorial Sloan Kettering in NYC and it happened to me. Mine dropped so low that they had to take me off it and give me shots to boost my immune system. My whites were as low as 1.5, my neutrophil was 19% and my absolute neutrophil was 0.3 and It took months for my immune system to start working again. My doctors told me that some people have this reaction. After you rebound doctor can cut you dose to 1/3 if they want to try again.
Just as a general point to everyone on any treatment.
A low lymphocyte count is what we are aiming for and whilst ideally we would want to have some healthy lymphocytes by the time we are treated these are swamped and largely rendered infective by the dodgy ones. So if you are lucky enough to have a big drop in those cells that’s great.
What’s more of concern is the neutrophil count which can go down dramatically with any cll treatment. And can do so unpredictability at any point. If these go down and especially if you get an infection or fever they will almost certainly want to treat you with GCSF injections and are likely to want to stop whatever treatment is causing this to give the count a chance to recover.
“Neutropenic sespis” is a medical emergency that can happen without much if any warning and is why we should all be measuring our temperatures regularly, avoid paracetamol (acetaminophene) and Non steroidals such as ibruprofen and go straight to the hospital if our temperature increases. This effect can even happen to untreated patients as the bone marrow becomes infiltrated with cll.
Nope, I was on watch and wait for five years. On ibrutinib for 9 weeks now. WBC had been slowly growing to 82.6, it was the platelets dropping below one hundred that triggered my treatment. Ibrutinib reduced nodes on neck in 48 hours. WBC spiked at 132.3 after first week. Now 78. I believe while you can get a spike in WBC it is not same for all. Hope treatment goes well for your dad
I really appreciate your share. I have not started treatment yet and I’m not sure yet how long I’ll wait.
What I am struggling with is how important are CT scans in making a decision. Does anyone have thoughts. I know that one CT scan gives about was the same amount of radiation as two years just being out and about.
CTs are about seeing the size of your internal lymph nodes. It’s amazing to me we don’t use more MRIs for that purpose. I think it’s mostly a cost reason. There is an argument for us monitoring what’s going on inside us. Eg to catch a richters transformation early. Some doctors use PET CT for that purpose as it can pick up how active our modes are (so you look for a more active one than the rest). I understand there’s a new one coming out called PET MRI.
But some doctors keep away from CTs altogether as a routine and focus instead on the size of the visible lymph nodes and the blood counts. In theory if some of your nodes are enlarged most of them probably are. So unless you are getting symptoms which may be from an internal node I think some people don’t see the need to monitor at all.
It’s all very tricky and as far as I can tell there’s little evidence base to really support what’s going on. If your disease is slow growing then you may well find that cll experts are less concerned about doing such investigations. Whereas if it’s fast they may be more interested. And in clinical trials these scans provide a useful measure of response ie the nodes shrink so therefore the treatment has worked...
Personally I’ve ended up having a lot of scans since I was diagnosed for various reasons and so far I’ve taken the view that the radiation is probably the least of my concerns. But I do think moving forward I’m going to be less keen. And as I say I do wish they did MRIs more than CTs and for a while now I’ve asked my doctors if that would be as good (Eg for working out what they were dealing with prior to my tonsillectomy they were happy to do an MRI instead of a CT).
Dr. Mato said in a question session something along the lines that part of it is whether the hem/onc is able to acurately interpret an MRI since reading scans is partly an art.
My first thought would be to run the blood test again. The machine could have errored or maybe results are from the wrong patient (the latter is very unlikely).
I suggest a qualification to your statement I had Trisomy12 unmutated but mutated reacts better to treatment
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I am also Trisomy 12 UnMutated, and after 6 rounds of treatment on 4 different non Chemo drugs, I find that my ALC and WBC drop very quickly (much faster than my CLL expert doctor expected) to any treatment but after treatment is stopped, the CLL returns very quickly.
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That phenomena is occasionally observed / commented in papers or by the experts. The typical mention is that Mutated patients get longer remissions after treatments, and on drugs like Ibrutinib/Imbruvica and Idelalisib/Zydelig a slower steady decline is preferred for reaching MRD neg.
usually Numbers go up because Ibrutinib gets the cells out of the organs with trisomy12 it is different I had over 500000 and the Numbers went down I was in a clinical trial Ibrutinib then Obinutuzumab and then Venetoclax as to mutated versus unmutated Look up a video on patientpower.info or cllsociety.org
There are thousands of videos on patient power, if you know of one that proves that mutated reacts better to treatment, please provide a link for that specific video.
I continue to believe that UnMutated reacts faster to many treatments but Mutated has a better outcome because PFS (Progression Free Survival - the time prior to progression) is much longer.
???? I have done what you suggest and cannot find any place that says Mutated reacts faster to Ibrutinib treatment, the usual statements say that Mutated has a better outcome due to longer PFS ( after treatment ).
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In Dr. Sharman's blog- he states "appear that patientswith unmutated BCR / IgVH actually respond more quickly and deeply to ibrutinib.
When I first started on Ibrutinib my white court dropped significantly too, and did for about 3 months or so until it was down to normal range. My Oncologist said it was unusual, generally it shoots up he said, but, he said, it happens and nothing to be concerned about. I was glad it was coming down to normal range after so many years of being high.
My WBC was at 92,000 when I started Ibrutinib and within 3 months was normal at 9. My white count never went up. Gigantic lymph nodes disappeared within 2-3 days. I too am Trisomy 12. I feel fortunate that I have yet to have negative side effects with Ibrutinib. Sally
I am un-mutated and doing B+R treatment. My WBC dropped from 198,000 to 18,000 in 10 days after first treatment. Dropped to 6,200 in 26 days right before second cycle of B+R. As my dropped RBC, NA and platelets dropped as well, I had to have shot to rebuild WBC. WBC now at 13,000. Hope your Dad does well as I have. No sickness yet.
I just realized that i mis typed when I was writing this question on here. It should have said Unmutated with deletion of 17 and11. My dad says he has not had any reactions to this drug. Well besides the crazy drop in numbers. All the best to you as well!
At 406, it seems his WBC’s are not favoring seclusion in the lymph nodes, spleen, etc., remaining in the blood instead. As I understand it, the large increase in plasma WBCs that is typically observed following introduction of ibrutinib is due to the fact that the drug purges the lymphoid organs of monoclonal B lymphocytes and they wind up in The plasma. That effect is temporary because their numbers begin to decline thereafter. Great news for your family. Here’s to health!
That is a huge drop in a couple of weeks. Actually may be too fast for liver health. Has his blood chemistry been constantly monitored? By now, there is not enough CLL left to worry about killing more cells too fast. But they should be checking his liver and kidneys.
I was able to tolerate dropping about 25k per day. That would be consistent with his drop of 400k in 2 weeks, but if he went up first, as is normal, some of his drop could have been much faster.
Yea seemed really quick, the doctor said he had not seen this before.. so waiting until tuesday for him to meet with other colleagues to discuss. He has had his blood monitored almost week to week.
I made a mistake when posting, it should have said unmutated**
What worried me was my doctor had not seen this before. He says he has been feeling fine with none of the side effects. He had really large nodes in his glands in his neck and he was on prednisone to shrink them and also had a blood transfusion to help raise his hemo to give him more energy.
We only found out in middle of October. He had zero energy (and that is not my dad, he is always running around, working etc) so when he started saying how sore his throat was (could barely eat) and combined with the no energy. We took him to the hospital. So in a crazy three months
His lymph nodes in his neck were quite large, and hurt like crazy. Could barely eat. So we took him to the hospital and thats when we found out. He was prescribed Prednisone which reduced the size and they went down alot.
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