What to do-New hematologist : Just received... - CLL Support

CLL Support

22,369 members38,476 posts

What to do-New hematologist

wilhoitaz profile image
24 Replies

Just received results of bloodwork -CLL-30 months Imbruvica-first time in 10 years my chart is all within normal range-my doctor retired-phone visit with new one--like many of us I face horrific cramps-also prescribed Tylenol 3 for back issues.

New Dr wants me to cut Imbruvica to two capsules -logic is that it will help with cramps--Using meds from previous Dr's got me back to normal and can manage my day with pain relief -why change what is working? Overall Im am doing better than ever since the first day facing the beast.

What do you think?

Written by
wilhoitaz profile image
wilhoitaz
To view profiles and participate in discussions please or .
Read more about...
24 Replies
Justasheet1 profile image
Justasheet1

The doctor is right to try and give you quality of life too. Are you a small weighted person? Three capsules is the dose for a 220 pound person. That was the dose that was studied and approved. Perhaps 2 capsules will do you fine.

I believe what was mentioned before was 5mg/kg for maintaining 100% BTK inhibition. Ask your doctor again.

Jeff

annmcgowan profile image
annmcgowan in reply to Justasheet1

Hi Jeff thank you for the dosage information on ibrutinib. I have always worried about reducing the dose if it was ever necessary. So far so good. Ann

wilhoitaz profile image
wilhoitaz in reply to Justasheet1

Thank you for your response-do you happen to have a link?

Justasheet1 profile image
Justasheet1 in reply to wilhoitaz

I’ll try to find it tomorrow for you.

Justasheet1 profile image
Justasheet1 in reply to wilhoitaz

Found it.

ncbi.nlm.nih.gov/pmc/articl...

SofiaDeo profile image
SofiaDeo

Your profile isn't filled put, so IDK what healthcare systems you are dealing with. I am guessing US with the mention of Tylenol 3 & will go on that assumption.

In the US, and likely other places, many doctors will try to decrease a dose of many types of medicines (not just Imbruvica) to see if you still get a therapeutic response on the lower dose, with less side effects. This was first seen with antihypertensive medications I think, the VA system here did some studies demonstrating it. Then the psychiatric profession started doing it, and last I knew "good practice standards" were to try to decrease if not stop medicine yearly. Pain Management specialities also recommend periodic attempts to decrease narcotics, and Tylenol 3 contains a narcotic. Since CLL patients are high risk for lung issues, the codeine in Tylenol 3 that affects lungs should try to be decreased.

The problem with many narcotic and non narcotic pain meds, is that one Almost Always eventually develops a tolerance. You would need more medicine to get the same pain relief, with the extra bad effects from increasing Tylenol (liver) and codeine (lungs and GI tract). So you can't apply the "if it ain't broke don't fix it" rationale when narcotics are involved. Best Practices in medicine regarding narcotic use have changed over the past decade, and any doctor who doesn't implement narcotic reduction periods into their practice is opening themselves up to lawsuits and professional censure if patients develop issues from never trying to decrease the dose.

And as far as Imbruvica use goes, there is increasing documentation that lower doses will keep CLL at bay once initially controlled, with less side effects seen at lower doses. This doesn't work for everyone, but it's worth trying. So IMO your new doctor is up to date on best practice recommendations for not only your CLL but also Pain Management.

sllincolorado profile image
sllincolorado

I agree with Justasheet1 about quality of life. In addition to discussing dose did doctor suggest switching to acalabrutinib which is a very similar med which typically has fewer side effects? I understand why you may be hesitant to lessen the dose or switch. I think you are in the US so you may want to try the free expert opinion through CLL Society.

cllsociety.org/cll-society-...

Personally I could not function on ibrutinib - I was in so much pain I was crawling around the house - no issues on acalabrutinib.

SofiaDeo profile image
SofiaDeo in reply to sllincolorado

Me too, on ibrutinib I had a lot of GI issues, to where even one capsule 3 times a week was still impacting my CLL but I was still having diarrhea, etc. & called it quits.

wilhoitaz profile image
wilhoitaz

I have Spinal stenosis-learned of it prior to CLL diagnosis-I take same amount Tylenol 3 for years-however the pain got worse in lower back during initial treatment with Imbruvica and crystallized as Dr called it --stayed with me--remainder of body for pain is quite manageable--lots of cramps but that is how it goes for me I am Blessed!.-- Again my question re reduction in dosage for imbruvica

prior to receiving these responses I had only heard of reduction in dosage for surgery or other serious issues I wish to thank each one that responded .

wilhoitaz profile image
wilhoitaz

I have located several links re my issue thank you

rcusher profile image
rcusher

I have been on Ibrutinib 3 + years now, 3 pills per day and also suffer from cramping. I take a magnesium pill every day for it and if I start to cramp I have an an essential mineral magnesium oil that I apply and it virtually disappears. I have asked my Onco/Haem. about reducing my dosage but he says if it's working why change it. All my blood work is normal and I don't suffer much else.

Phil4-13 profile image
Phil4-13 in reply to rcusher

rcusher, it seems you have those side effects under control. I hope you have fewer cramps and the treatments become easier. Sandra 😊

Catnap7 profile image
Catnap7 in reply to rcusher

I did the same for my cramping and it worked the same for me

wilhoitaz profile image
wilhoitaz in reply to rcusher

I do the magnesium daily as well as a big B complex and the foam helps when cramping happening

JerrysGirl3 profile image
JerrysGirl3 in reply to rcusher

Just out of curiosity? Have you tried electrolytes or sports drinks ? I have found them to be very useful, as well as magnesium in helping with cramping.

wilhoitaz profile image
wilhoitaz in reply to JerrysGirl3

couple of qt of Power Aid daily-Tizanidine-2-3 bottles high end non alcohol beer also daily-milk with my meals-mostly works--I am 70 years of age-still do blue collar work part time-very hard work--that is when I notice cramping activity at various locations on my body--I dislike the tummy one the most--cramps have improved since my previous post fortunately--continue a CLL in remission-2 Imbruvica daily--also not related-I am not getting "cancer" bruises whenever I spack my arm or legs working-I don't wear gloves when working so get cuts in hands often-they react more like non cancer person--don't advertise cancer when I go places

JerrysGirl3 profile image
JerrysGirl3 in reply to wilhoitaz

Sounds good to me wilhoitaz!! 😁😁

JerrysGirl3 profile image
JerrysGirl3 in reply to wilhoitaz

My worst cramping started in my upper thighs and worked itself down to my neuropathied feet 😳. That's when I was on blood thinners. I decided to stop them because it was too much for me. And it would happen mostly when I was in bed in the middle of the night!!! I had a huge bottle of magnesium aspartate at the side of my bed and would gulp down a few while I cried. Glad that's over with tho I still get them in my feet.

wilhoitaz profile image
wilhoitaz in reply to JerrysGirl3

Curious-Did you receive the covid vaccination--if so have you noticed any difference in cramping--I did not do the vaccination so I have nothing personally to compare to

JerrysGirl3 profile image
JerrysGirl3 in reply to wilhoitaz

I did the original two in 2021. Got so many side effects after the first, still took the second but no boosters. Affected my heart and BP bad. I have suffered on and off from muscle cramps in my legs. Sometimes in my solar plexus. And sometimes stomach. I have sound magnesium capsules help greatly. Sometimes I wonder if my thyroid meds, Tirosint, cause me to dehydrate overnight . I just ordered some magnesium cream as per Neil's recommendation - had to order online as local places did not have. That comes Wednesday.

BeckyLUSA profile image
BeckyLUSA

My severe GI issues went away when my dosage was reduced to one Ibrutinib daily. AND my numbers are still at the same level for the past 20 months! I would give it a try!

Catnap7 profile image
Catnap7

Hi. I’m out of 2 yr trial IB/V My hematologist cut me to 2 pills after 6 mo in trial... still got UMRD at 1 yr I am 105 pounds and got 75% of side effects on the list The reduction of IB and V lightened them up but I am a believer DOSAGE is an issue Catnap7

Hello & yay for normal range! I am on w&w journey w/husband. I can onlyb remark on other meds for heart etc. Sometimes instead of our bodies getting use to certain meds and creating a need for "more", they adjust as they also do to find therapeautic range re: side effects. For example different systems but heart or mental systems etc.Be well & thank you for sharing. Yay again!

Dahlia7 profile image
Dahlia7

I was on ibrutinib for 5.5 years. The vast majority of the time on one capsule per day. My numbers were normal until I developed a mutation. Did the lower dose hasten the development of a mutation? The average time to mutation on ibrutinib is 60 months per my doc so I suspect not. But that question may be open to debate. Good Luck. Tony

You may also like...

What can I expect from my appointment with hematologist

stage I won't hesitate But overall just curious what will happen with first appointment Thanks...

First hematologist appt tomorrow

tomorrow for the first time. I feel anxious. I feel absolutely fine but my wbc is 42.6...what...

What do you all think?

was pleasantly surprised. What was normal on 5/28 the result was normal today. The reason for...

Back from the hematologist, counts slowly rising.

Just got back from my visit with the hematologist. I am 55 years old. I was initially diagnosed...

Hematologist meeting

numbers are not high with CLL (18) but the hematologist does feel I have had this CLL / Lymphoma...