Platelets dropping after 7 Months on Ibrutinib

[naddude]

Hi:

I have been on Ibrutinib since November after failing 4 cycles of FR. Things were good:

AL and WBC almost normal.

However a month ago I had bronchitis and my GP gave me a course of antibiotics for 3 days. Since then my neutrophils fell to 1 and Platelets to 128. The neutrophils recovered to 2 but platelets are continuing to drop to 108. My WBC and ALC increased but only slightly and still withing normal ranges. I am being tested every 2 weeks now but worried that I may becoming Ibrutinib resistant.

Has anyone else experienced this? Thanks!

[Jm954 Administrator]

I’m not a Dr but it doesn’t sound like resistance. The infection has put more strain on your bone marrow and it’s strugged to cope.

Your white cells sound fine and your platelets will probably start to slowly recover soon.

Remember neutropenia and thrombocytopenia can both be side effects of Ibrutinib.

[Cllcanada Top Poster CURE Hero in reply to Jm954]

You beat me to it... 😆 I agree...

~chris

[naddude in reply to Cllcanada]

Thanks Chris.

[naddude in reply to Jm954]

Thank you so much! It’s always a worry when things change. I am so grateful for this community.

[81ue]

I hope your platelets get better. I've been trying tahini for platelets. I don't know if it works, all I can do is read, learn, try. If you get really really low, you might want to experiment with it.

I dipped down to 70 when I stopped the tahini and got platelets up to 80 with tahini again. I have read that some people do worse with tahini, other sites recommend tahini for improving platelets. My dr. is not concerned. I've been on imbruvica since 11/2017. The platelets went as low as 54 in January so I was able to improve while taking imbruvica when I added the tahini (again, not really sure if its the tahini that worked but based on numbers I'm going to continue it as a precaution until I learn otherwise or experience no positive results from it).

[naddude in reply to 81ue]

Hi:

Just so you know all the literature indicates that tahini will REDUCE platelets not increase them. So your results might be a coincidence.healthline.com/health/how-t...

" Foods that decrease platelet count

While some foods can raise your platelet count, others, including some beverages, can lower it. Things that can lower your platelet count include:

quinine, which is found in tonic water

alcohol

cranberry juice

cow’s milk

tahini

[81ue in reply to naddude]

Thank you - I read an article against tahini, but didn't know that cow milk could affect platelets. I stopped the tahini for 2 weeks and my platelets went down so I got scared and started tahini again. My platelets went up.

My appointment is Friday and I'll see what the numbers are while on tahini, if it goes down then I'll quit the tahini. I've seen online advocating taking it to help platelets (but then everything cures cancer if you look for the articles).

There may be no connection with tahini and my platelets results, I'm basically experimenting and willing to try anything

[81ue in reply to 81ue]

I just wanted to update - my platelets are now 97 up from about 80. I take about 2 Tablespoons tahini each day (got a jar at my work desk). Was it the tahini? I don't know, but I do know that the 2 weeks I stopped taking it between blood tests is when my platelets went down to about 70 and it scared me. I do think people should read up first before deciding to do tahini due to the reports in which people do worse with tahini.

I don't know how all this works. I see sesame oil on lists to increase platelets and tahini has sesame oil, I also see tahini on lists that lower platelets. I do plan on experimenting again in a month on what happens when I stop tahini but right now I feel like I should keep doing what I've been doing to get the platelets up before I try stopping the tahini again.

I also do the Budwig flaxseed oil and ground flax in cottage cheese and several times a week eat a large bowl of leafy green salads that include spinach, so all this works together somehow

[RxDon in reply to 81ue]

Thank you for your article. My platelets were as low as 60 and the Dr. started me on Imbruvica. After the first month of Imbruvica the count was 75. He was happy and had me double the 140mg dose. I am hoping it will continue to go up. On the the other side however, my wbc has gone from 33 to 66. He says that’s common and it will progress Down slowly. Has anyone else had these occurrences?

[AussieNeil Partner Administrator in reply to RxDon]

Having your white blood cell (WBC) count increase dramatically when starting on Ibrutinib is quite normal as your specialist says, though it is unusual to start on a 140mg Ibrutinib dose rather than 420mg. The WBC increase is due to Ibrutinib counteracting the adherence molecules that normally keep CLL cells in lymph nodes. That causes them to enter the blood stream, where they are more vulnerable and eventually die. About 70% on Ibrutinib see this WBC increase which eventually drops below the baseline count (the one before starting treatment) and continues dropping. It can take five years before the WBC is in the normal range.

Neil

[Glees]

Unfortunately yes. My husband had to discontinue ibrutinib due to peripheral neuropathy and low platelets. Check about possibly lowering your dose if they continue to fall. My husband has since had a stem cell transplant but low platelets continue to be an issue. We are hoping this will stabilize as they reduce some of the immune suppression drugs he is currently on.

[naddude in reply to Glees]

Yes it's always a worry that the drug will be stopped. I had discussed reduced dosage but my specialists worry that a reduction could facilitate resistance. So it's a catch-22. Sorry about your husband I hope he improves and does well as a result of the transplant. Thanks for your thoughts.

[naddude]

Hi Again. My latest blood work indicates that my platelets are continuing to fall now at 102. Of equal concern is are my Bilirubin levels. I have noticed that within a year they have doubled from about 11 to 22. Has anyone else experienced this or have any information? Thanks

[newyork8]

As commented by others Ibrutinib can lower platelets. Dont necessarily correlate lower platelets with more disease.