Calquence Bleeding?

[schmooth97]

Has anyone had bleeding on Calquence? My platelets recently (a week ago) were 275 — up from before (~200), but I take papaya leaf extract. I have petechiae on my arms, bruise more easily on my skin at times, and since I started taking it my tonsils are not swollen (they’re always just big per the ENT) but have red spots that won’t go away. I smell blood sometimes in my throat but nothing comes up. I saw a tiny streak of bright red blood yesterday in my mucus and when I brush my tongue too hard and ram my throat, there’s a tiny particle of blood. I read that bleeding can be a side effect. I see my PCP today and have a call in to my onc.

[SofiaDeo]

Please stop the papaya leaf extract. FWIW, my neighbor with CLL had his platelets tank shortly after starting papaya leaf and chlorophyll extracts. I know there is some promising research on papaya leaf in patients with Dengue Fever, but the mechanism of action that causes Dengue to decrease platelets may not be the same as in CLL. We are talking, a virus affecting platelets compared to diseased bone marrow. And who knows what effects papaya leaf and/or chlorophyll extracts have on CLL. And no one knows how papaya leaf interacts with BTK inhibitors. Please remember, the original "drugs" all came from plants, these things are not innoucuous just because it grows in a plant.

[craterlake]

Hi , schmooth . yes the calquence can cause bleeding .. i have experienced major petechia on my lower legs and feet . purpua . bruising and finally nose bleeds ..... i had to stop taking the calquence when my platelets went down to 26 after only 8 months on calquence ...... i started taking the papaya leaf extract a couple of months before i stopped taking the calquence . it slowed the downward progression of my platelets by 1/2 .. the most impressive thing was that 2 days after i started taking the PLE my nose bleeds stopped and i have not had another one since ... even though my platelets are now at 24 .. it obviously helps with the platelet aggregate ...... my petechia is going away . no more bruising etc, --- why are you so hard on your mouth .if you are not carefull you might wind up with mouth ulcers ... i am amazed that your platelets are 275 . is your lab range the same as my lab test . for example they are suppose to be 150- to 400 .... i sure would like to have your 275 . lets us know what the doc. says . blessings , james

[schmooth97 in reply to craterlake]

I started because of SLL. The nodes were getting obstructive.

[SofiaDeo in reply to craterlake]

Hmm with your experience of the papaya leaf helping, so there are now at least several people on a BTKi with good results, I am amending my recommendation to "please don't take it without your doctor being aware, and make sure it's a high quality one." I suppose I am a bit concerned because in my neighbors case, it seemed to precipiate falling platelets. But I have seen the data on the Dengue Fever patients, and it looks promising, so who knows, docs may start recommending a quality tested supplement in a few years!

[craterlake in reply to SofiaDeo]

Hi SofiaDeo , i am glad that you came to that conclusion yourself .. you always do very good research ,,, i was wondering about your neighbors bad experience with the liquid chlorophyll and papaya leaf extract . i know a number of people who have taken the chlorophyll . not extract though just the liquid in the bottle .. it usually causes your liver to cleanse and if you take to much it can make you REALLY nauseated as well as to much beet juice .. years ago my wife had a fibroid tumor which caused her to become very anemic from heavy menstrual cycles . the doctor recommended that she take iron supplements and liquid chlorophyll along with lots of colorful salads .it worked great ,,, they wanted to do surgery to remove the tumor but she refused . she just kept up with the healthy lifestyle and eventually went through menopause and that was the end of that ... hope you are doing well .. blessings , james

[schmooth97 in reply to SofiaDeo]

Thanks. I let my doctor know and he said that was the only herbal remedy he endorses.

[Handley]

Hi - yes, I've been on Calquence for a week now and have several large-ish blood blisters inside my mouth. I have informed my CNS and await a reply. I also get headache for around 3 hours after taking capsule. My platelets are low around 70ish and also Hg at 100. Onwards and upwards! Good luck - Handley

[schmooth97 in reply to Handley]

The headaches are annoying.

[kitchengardener2 in reply to Handley]

I have been on Calaqence/Acalabrutinib for 15 months now. Not had any noticeable side effects and certainly no bleeding more than the usual but when I am a bit more vigorous with the toothbrush.

My blood counts are more or less in normal ranges.

I have been taking Apixaban since June which I was concerned about, this also can cause bleeding but not noticed anything.

I had Allopurinol for the first three months which caused early morning headaches, went after a strong cup of tea.

[schmooth97 in reply to kitchengardener2]

Did you have nodes that fluctuated somewhat, like some nodes refused to go down maybe until later? My armpit nodes are still small but the ones in my neck — 3 are still there but the rest are small. Just wondering. It’s only been a month.

[cllady01 Former Volunteer in reply to Handley]

Others have suggested that coffee helps with the headaches and that they eventually go away.

[schmooth97 in reply to Handley]

Did you have nodes that fluctuated somewhat, like some nodes refused to go down maybe until later? My armpit nodes are still small but the ones in my neck — 3 are still there but the rest are small. Just wondering. It’s only been a month.

[bennevisplace]

Hi. I too was surprised at your high platelet count, a) because of treatment and b) because I associated petechiae with low platelets. Seems I'm wrong to assume on both counts. In this study of 99 CLL patients on first line Acalabrutinib ashpublications.org/blood/a... 18 had petechiae, only 3 had thrombocytopenia.

I'll endorse strong coffee as a remedy for headache, any time of day.

[schmooth97 in reply to bennevisplace]

Thanks for the doc!

[schmooth97]

I asked this of two people, but did anyone have nodes that fluctuated somewhat, like some nodes refused to go down maybe until later? My armpit nodes are still small but the ones in my neck — 3 are still there but the rest are small. Just wondering. It’s only been a month.

[couchbeings]

They have suggested that my husband starts this treatment to protect his kidneys- the bleeding thing is a bit of a concern because he has very varicose veins and an enlarged bruised foot as part of it. Do you think this could be a problem - we will ask the various consultants. The kidney one knows about the veins, I dont think the CLL one does.