That is not a mistake 9.1 x 10^9/L. Ridiculously low and a good story to share. 17 months post treatment on Obinatuzimab and Venetoclax and I am now starting Zanubrutinib. Why? My reasonably aggressive CLL Del 11, Del 13 and IGHV Borderline (but behaving at unmutated due to the ATM deletion) triggered ITP a couple of years ago. So as the Lymphocytes came back post treatment a very small increase in malignant B cells triggered a landslide collapse in platelets. From 102 in March to 20 this week. Better than first time around at 4 when ITP diagnosed.
So not treating the CLL for CLL's sake but to keep the ITP at bay. Boy does ITP complicate this beast, at just 51 I did not really want to be burning through a 2nd line of treatment already, but hopefully the BTKi keeping pressure on the B cells will keep them in check for a long remission and here's hoping I don't suffer the side affects!
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I can share a similar personal story Artist having also just started Zanubrutinib second line with even lower lymphocytes than that. Thankfully mine wasn’t due to ITP (though my platelets were the only seriously depleted lab) but rather a lympadenopathy/splenomegaly that raged back after 3 yrs very successful remission after I&V. Like you I hadn’t expected to be burning through a second line of treatment so rapidly either. I’d hoped for a more meandering 2nd W&W period but it wasn’t to be. I’m Trisomy 12 undetermined IGHV.
What I can say is Zanubrutinib appears already to be a highly effective treatment and in my case has less side effects than the I&V.
Obviously I’ve had other ‘little challenges’ since taking it like life saving abdominal surgery but I’m very relieved to be back on it.
Ohh you have had a hard journey- that swelling is very unpleasant! Your case is unusual to have such a low lymph count but such serious swelling. I really am looking forward to the Zanubrutinib and your experience reinforces it- Just had a round of IvIg today to lift platelets to let me start tomorrow- I feel better now than I have all year and hopefully that can be retained with the BTKi.
I should have started my treatment with Zanubrutinib 6 weeks ago but because of on going UTIS I cant start until sure infections have cleared I'm getting really worked up and cant sleep with the worry I will never be well enough to start an also worried about side affects as I have palpitations . any help would be welcome
What are your immunoglobulin levels? If they have been persistently low ask your Haemo for IVIg at 40g in 400ml- Intravenous Immunoglobulins- basically borrowing donor immunity from blood plasma. This is great for overcoming infections
The IG test is a seperate order on the blood test- Your Haemo or GP will need to ask for it on the form. You will only qualify for IVIg if your immunoglobulins have been low for a while. It is worth discussing with your haemo as it may be the root cause of your persistent infections. I was getting infected all year- cellulitis, infected wounds needing antibiotics, pneumonia, diarrohea that would not clear for weeks. I'm otherwise a fit and active 51 year old. All my Ig's were running about 75% below the minimum so I qualified for IVIg and I can assure you it makes a big difference.
I have infections as the result of recent major surgery and that includes a UTI but I’m still continuing with the Zanubrutinib. I’m on antibiotics that don’t negatively interact with Z.
I’m sure you’ll find it highly effective once you start it. I’m not really sure why the infections are preventing you from starting it.
My hematologist said he wanted to make sure the UTI had gone before starting on Zanubrutinib but I have been getting them at least every two months And thought I would never be able to start treatment .I thought the antibiotics would not mix with the zan but will have to ask more questions I am on nitrofurantoin. Thank you very much for your reply
That’s what I was initially prescribed for the UTI but it has now been changed to co-amoxiclav. This is to ensure the large surgical wound I presently have doesn’t become seriously infected. I’m seeing my haematologist tomorrow and will check this out with him.
As I was initially on prophylactic antibiotics when I started the Zanubrutinib (Co-trimoxazole), I’d assumed antibiotics were fine though I do appreciate there are certain types that are not.
Icelollie, It's not a matter of "antibiotics don't mix with zan". It's more, ideally, you don't want to start a cancer patient on immune suppressing medication with a known infection. You want to clear any infections first. No one can say for sure, up front, just how immune suppressing the medicine will be *on you*. Most of the antibiotics do not 100% kill off the infection, they require your own immune system to finish killing the bug off. So if the drug happens to severely suppress your immune system, that infection may not clear up and in some cases may worsen. Even if this drug, nitrofurantion, generally kills off bacteria without immune system support.
At some point a decision to treat will be made, but it seems your doc is trying to clear this infection up first. I agree with others asking about immune globulin therapy, it may give you the boost needed to get rid of this, if for some reason you can't clear up the infection on your own. However, if you don't meet the requirements for immune globulin use, that complicates things.
You don't say how long you have been undergoing antibiotic treatment, just that you have had several infections over the past few months. If you got rid of the other infection, and you simply now have another one, try to be patient another week or so until this one is definitely gone.
Thank you for the information. I have had recurring uti's for two years now nothing seems to clear them for long some times back after a few days of finishing antibiotics I have had tests and bladder scans but nothing shows up the cause,
These CLL complexities are a problem. I am always watching my hemoglobin as developing Evans Syndrome and having AIHA to keep the ITP company rather unsettles me. I do hope you have it under control and are managing well.
I’m not an authority but my oncologist said the newer btkis have fewer side effects. I’m 79 and have been taking zanubrutinib , brukinsa, for a year. Lymph nodes were finished at last pet scan. Blood work is improved but still areas are out of range either too low or too high. The only thing I’ve noticed is increase in my blood pressure and heart palpitations. I already had hypertension and suffered with palpitations at times due to mitral valve prolapse. I hate the pet scan as it has showed other health issues I was unaware of as I had no symptoms. You should definitely do well on brukinsa. If not they seem to be developing newer meds to hold CLL at bey.
Thanks for that, You do need to keep a close eye on Zanubrutinib and cardio issues, it is the most dangerous side affect. They are working on 3rd gen Brutinib's that have a different mode of action and probably even better tolerated. Hopefully we can go onto these when and if needed
I was hesitant to go on the med due to my bp and heart issues, My cardiologist said he could handle things if they developed. Well my bp has gotten higher and pet scan uncovered a lot of calcification in arteries. I knew I had mild plaque buildup because I had lifeline screening. I now have to closely monitor the bp and take a baby aspirin . I checked with the pharmacy regarding the aspirin. As I’ve read older ppl will die with CLL but likely other conditions will kill us. I hope my oncologist will decide to reduce my dosage and maybe the bp will get more stable. Of course the calcification in the arteries contribute to the bp issues. Thank you for the comments.
As a fixed duration treatment I always reckoned it would be repeatable. I am glad that approval is in place. Unfortunately in my case if I broke through in 17 months first time round then I'll probably break through in 17 months 2nd time around. It also did not achieve uMRD in me or CR so I don't think any haemo's would recommend me to repeat it.
Hi I'm 62 and in my tenth year since diagnosis. I'm on round 3 with my CLL and on zanubrutinib 80 mil it's working but slowly. How is the zanubrutinib going for you.
Hi, 51, diagnosed 4 years ago. Had O+V as first line which finished a year and a half ago. Started the Zanubrutinib 1 week ago 320mg. No issues with it at all until yesterday- Had a ringing headache from dawn to dusk that paracetamol did not even dent, then the muscles across the top of my back started to hurt, every step is a jolt of pain, but a cough is sheer agony. But at least the headache is gone today! I figure just startup problems and will settle down once I get used to the course.
Hi artist blacksmith. I had a few problems with aching and cramps so I now have a hydralight in the morning and it seems to help and I feel more energised. Also magnesium tablets 2 per day and iron tablets seem to be helping as well. Hope this helps regards Ken
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