Hi everyone , i just listened to a podcast from LLS featuring Dr. John Leonard . it was VERY informative and gives all of us great hope for current and futures treatments .. ... i would like some input from the group on my personal issue ... my platelets are trending down .. before i started Calquence last dec. my platelets were 91 ... normal is 140 to 400 --- then i started calquence dec. 2 ,2021 and after 5 weeks they went up to 150 .... by march 28, 2022 they were back down to 80 ... may 18 th they were 70 ...july 15 th they were 44 ... some purpua on my arms and some petechiae on my lower legs and feet.and feeling a bit tired .... i started taking 1200 mg of papaya leaf extract yesterday . my next onc. visit is 5 weeks away .i am wondering if the papaya leaf will improve my platelets by itself and wait for my appointment next month or should i be concerned enough to call my onc. tomorrow .... thanks for your wonderful help and compassion to all of us .. james
very good LLS podcast with Dr. John Leonard fr... - CLL Support
very good LLS podcast with Dr. John Leonard from Weill Cornell medicine and i have very.Low platelets any advice ????
I would call the pharmacy where you get the Calquence and I would do it right away. I was told no way should I take it while on the Calquence…..please check. I have low platelets too….they hover around 70. I am concerned please check!
Panz 🙏💕🙂☘️
Hi Panz , thanks for the reply .. i called the pharmacy and ordered more calquence and told them about my platelets and the papaya leaf extract ... they did not seem to concerned .. time will tell . thanks also for your concern .. blessings , james
At your age and the level of dropping platelets you are having and being on treatment is an indication you need your Drs. advise, and may be needing a visit to get some tests run.
Papaya may be tasty, but not proven to be a big help with platelets--the experimenting for your situation can take place when you are not in an iffy situation--and I'd suggest with the okay from your Dr.
Do call and get advice, please---and let us know how it goes.
Craterlake! I totally agree with cllady!Ask your dr! Papaya leef are not the answer to low platelets. When my platelets sink too much, or too fast, (limit used to be when under 20K, but now limit is much higher since I am a heart patient on blood thinners) I get an IVIG infusion that helps for a few weeks, giving time to consider other medical options. Prednisolone helps too, but it is not best in the long run. Having both this week. 44 is considered to be a ”safe” value, but not healthy at all. Esp not if you have comorbidities. Definitely a case for medical advice! And new bloodwork soon. Platelets are the most unreliable value of them all says my senior hemathologist.Best wishes!
Christina
Good morning Christina , just set up my new starlink sat dish last evening .. thanks for the reply ... and all the good info ----- Papaya leaf extract has been researched and used a lot in india for people who get denge fever which causes the platelets to dramatically drop . i am not sure how well it works on people that have CLL . although i first heard about it on this forum .. i will let everyone know if it helps me. I had blood work done 9 days ago . i called my onc. on monday and he is out for the week . his nurse said o.k i'll tell him. it is Sabbath and no news yet ... he knows i fortunately do not have any comorbidities so although 44 is not healthy , yet not critical i guess . blessings , james
Hi cllady , thanks for the reply .. i called my onc. on monday and he is out of the office till next week . the nurse said she wood tell him .. i like eating papaya with lime juice when i can find a good one .. the papaya leaf extract is bitter so i take it in a capsule . i will post an up date next week hopefully . have a safe week end .. james
Good luck Crater lake. I'm in the UK with Platelets<10 so having transfusions every other day. It's very tiring and frustrating I will admit. I would consult your oncologist I was you.
Oh Nicebaps, how dreadful! Doesnt IVIG infusions help? For me they keep up the thrombocytes within one or teo days, and last for a couple of weeks. I had one Thursday. And apart from that I am dependent since a few years on Revolade ( Eltrombopag) I dont like it, but it seems to be the only way. All my best wishes to you
Christina
Today's platelet count is 11 with WBC 215. I've also had Rituxamab and currently taking Eltrombopag+ Idela. Nothing working at the mo which is a shame.
Oh Nicebaps! What a fearful fight for you. Have you had eltrobopag for a long time? It takes two weeks to kick in, I guess you know more than well! Once I was at not countable = below 5K. When I rose to like 6 or 7 my senior hemathologist said: Very good! The new ones are very extra fresh and strong. I never had transfusions though.All my prays and wishes for you to get better!
Christina
Ouch! Needs sorting ASAP!
I had a friend back along - his platelet count was 3 (three) and curiously he had no bruising. He did not have CLL - but clearly a wonky platelet production. Transpired he had "giant" platelets - I'll let you google yourself. No cause was found - he remained well.
11 is low, please speak to your Drs ASAP.
Jig
Good morning Nicebaps ,thanks for the reply ... my viasat internet quit working completely so i ordered a starlink ... i set it up just before dark yesterday ...for a quick check , you can set the rectangle dish in the yard---- run the cable through the window ----plug it into the modem/router .plug the router into the wall socket . wait a couple of minutes and watch the dish rotate to align with the best satellite- write a new user name and password for he starlink dish on the computer or tablet .. a total of 15 minutes and it is working great .after that process i decided where to mount it on my roof .gooped and screwed it down . my balance is not good . i don't know if it is the CLL or the acalabrutinib . in either case the roof is a scary place for me to be ... i am so sorry to hear about your condition . i have had to have 2 iron infusions this year because of being so anemic and it took hours .a transfusion every other day must almost be unbearable ... with my platelets at 44 it does not seem so bad compared to yours at 10 ... i called my onc. monday and he is out of the office this week . i spoke to his nurse and she said she would get back to me . it is now Sabbath and nothing yet . so platelets of 44 must not be to serious yet .keep looking up .. by the grace of God i am so much better then i was last fall my friends and family believe it is a miracle ... i will remember you in my prays . blessings , james
We don't have Starlink yet. I live in northern California and it isn't available at our latitude. Looking forward to it being available. AT&T won't upgrade our old copper wired internet service to fiber optic. We are at the bottom of the list. Everything is connected to the internet now and many don't have adequate service.
I guess reading these posts that should be the least to worry about. I am lucky to have normal labs while taking Alacabrutinib. Knock on wood.
@
hi Country , its coming your way . he is putting up satellites frequently . keep checking their site .. if its available it will put a bulls eye on the map close to your address.-------. that's great news about your labs .. how long have you been taking the calquence ?..
Thanks for the internet info. I have been taking Calquence since around May of 2020. It has worked out great for me. Hope it does for you too.
your welcome .i started the calquence in dec. 2021 ... just a few symptoms with odd muscle and joint pain .. i am pretty stiff in the mornings .a couple hours later i,m much better ... my only issue now is my very low platelets .. so encouraging to hear stories like yours ... thanks .. blessings , james
Thanks for the info. I'm in touch with my consultant via email/phone on a daily basis at the mo.
Please do not start adding random supplements. They generally aren't quality controlled, they generally haven't been tested for drug or disease interactions, nor have good clinical trials been done to see what, if any, affects on platelets they have. Stop buying things from the snake oil salemen. Random articles on Google are basically to sell things. And I'll also mention, my neighbor with CLL who suddenly started on "chlorophyll" supplements for "low platelets" that he read about on Google, got even sicker very quickly (like, 48 hours) after starting his supplement.
Please call someone about getting a CBC with diff, for the appearance of the petechiae. Better to be safe and annoyed and have a copay for a lab test, than crash/burn/get hospitalized later. Your trending isn't stable, it's downward. Please stop the supplement & get bloodwork. Go to an Urgent Care center if there's one near you, not an ER if you can. Tell them you are a cancer patient, your platelets have been trending down the last few months, and now you have petechiae/are tired, if you can't reach a GP or your onc to order a CBC with differential. I know it's a Saturday here, but please do it if you can.
FWIW, I badgered above said neighbor (who has been in W&W for mm 7? years with an indolent CLL) to go to Urgent Care 2 Saturdays ago, and he thanked me later for "saving his life". His platelet count was well below 10; he got platelet transfusions and was in the onc's the next Tuesday and treatment started later that week. He suddenly turned; the petechiae and others symptoms are often indicators of this. Not always, but why risk it? Please go get a blood test. Even though it's the weekend, and even if you can't reach a doc.
Good morning SofiaDeo , thanks for your concern and reply . yes i am well aware of the snake oil sales men ... our daughter used to work at desert hot springs therapy center in cal. and they used to hear of all sorts of concoctions that some of the patients would use before they came ...i have been taking some well researched supplements occasionally for years .. with good results ... i first heard about the papaya leaf extract for the platelets on this forum . i did a lot of research on it a couple of months ago when i first noticed my platelets dropping .. it turns out the best research with papaya leaf extract has been done in india for people who have had Denge fever to increase their platelets .. i have had the petechiae since starting the Acalabrutinib . last year .. i showed it to my onc. and he said yes thats the calquence . he is out of the office this week and i spoke with his nurse on monday and she said she would let him know ... i had my last blood work 9 days ago .. i started taking beet root powder , barley green powder with a 1000 mg. buffered vit. c as a drink last Sabbath and now this Sabbath , one week later i am feeling better and looking forward to a nice bike ride this sunny morning .. have a safe week end .. blessings , james
Hi James,
I'm glad you found my post regarding considerations about using paya leaf extract when you have low platelets
healthunlocked.com/cllsuppo...
Your platelet count is trending into dangerous territory (under 50), so you would be very unwise to experiment with unproven remedies. In fact, it could be a fatal mistake, particularly if you came off your bike. You do not want an a uncontrolled internal bleed. You've had excellent, caring suggestions from other community members. I hope that you can arrange a blood test ASAP, as platelets have a half life of 10 days. If your bone marrow has stopped producing them, your platelet count could be down in the 20s now. If you develop an infection, you should have platelet transfusions to keep you safe. Otherwise under 10 is the trigger for transfusions. Please let us know what your next platelet count is.
Neil
Hi Neil , as always thanks very much for the info .. i will indeed keep you informed ... i hope to hear from my onc. on monday . james
Craterlake! Please listen to SofiaDeo! Is it that hard to just have a simple blood work were you live? Or expensive? You can have it done and still go away and have fun. Platelets can fall fast or be stable on 44 for a long time. I have to have blood work three times a week, having very instable platelets right now. Blood work is done in a blink! Better safe than sorry!
Christina
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