140 mg imbruvica ,Lyme disease : Hello and merry... - CLL Support

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140 mg imbruvica ,Lyme disease

Sergi
Sergi

Hello and merry Christmas to you all !

My wife is scheduled to start ibrutinib in January and really worried about side effects.

Her health is pretty good. She’s 13q mutated 70 wbc and hemoglobin and paletets within normal range .

What triggered treatment is the fact that lymph nodes in her neck are over 8-10 cm and starting to hurt and sometimes choke her .

I’m planning to ask her doctor to put her on a low dose (140mg per day ) since there seems to have been studies confirming that the drug remains potent at low doses .

She also has Lyme disease....Does anyone knows if Ibrutinib is compatible?

Thanks

10 Replies
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You don't mention your wife's weight, which is an important factor to consider in dosing Imbruvica. The standard formula found in the initial dose testing is at least 2.5mg of Imbruvica per kg of weight. I recommend you look at a previous post on this topic from Neil: healthunlocked.com/cllsuppo...

I've been on 420mg Imbruvica for 2.5 years. While the palpable nodes in my neck reduced in size quickly, it took a year for large nodes in my abdomen to reduce. Imbruvica alone is known to work slowly, and is not known for clearing bone marrow or achieving MRD. There is no way I would have started on a reduced dosage, because I wanted to achieve success. My labs have been in pretty good shape for the last year, except for immunoglobulins, which remain low. Even platelets began to rise to 150 after living at 117 for a few years.

Because my weight, according to the initial data, might be able to maintain the level I have achieved at 140mg, I have been wondering if stepping down to 240mg could help alleviate some of the side effects. For half a year, I've been questioning a lower dose, and have been met by a wall by the specialists who take the cautious and conservative approach. I understand, and appreciate that they want me to stay healthy.

In early November, I finally convinced them to agree to a 240mg dose. Labs after a month are holding steady, and I feel good. If everything holds for at least 6 months, I will again consider whether I feel ready to take the risk of lowering to 140mg.

The thing that bothers me about the two studies that have looked at reduced dose is that they don't break down the data according to weight, age, and mutation level of each participant. To me, that information is crucial.

As for Lyme disease, is your wife taking medication for it? If so, you might want to see if it, and any other meds, use the CYP3A4 enzyme to be processed in the liver, to make sure if there would be an interaction between meds.

It's a journey, and not to be taken lightly. I wish you and your wife well on it.

Sergi
Sergi
in reply to starsafta

Thanks for your answer

Like you said...not an easy path

cll2013
cll2013
in reply to starsafta

I definitely am interested in your 6+ month test results. I was on ever other day full dosage for 2 months and all blood count readings were in range. So I wonder how long does it take to show an effect? What are the risks of the body not responding to a return to full dosage?

starsafta
starsafta
in reply to cll2013

If you look at some of the news coming out of ASH, it seems that docs feel that restarting Ibrutinib or Venetoclax after stopping for a while will result in success, assuming the drugs were stopped for reasons other than having developed resistance to the medication.

Taking the meds every other day is an interesting approach. Would be interested in your path down the road.

Sergi
Sergi
in reply to starsafta

Thanks

Looking for short term treatment

Any suggestions welcome

Sergi
Sergi
in reply to Sergi

I will definitely bring different approaches to her doctor since she’s not in immediate danger

I am 13q mutated. I did FCR chemo for 3 cycles and reached remission. If she is under 65, maybe you can ask about it. I didn't want to take pill rest of my life with my markers being favorable for FCR. Port made it easy. I got second and third opinions. Is her doctor a CLL expert? 💕

Sergi
Sergi
in reply to GMa27

Hi

Her doctor is the head of hematology in MONTPELLIER,France and has been pushing for FCR for years for when the time for treatment comes.

After considering that she also had bad cases of melanoma and a bladder tumor, he agreed that Ibrutinib might be safer for her but I totally agree with you that reaching remission quickly would be preferable instead of pill for life

Thanks for your input

Sergi, you also don't mention your wife's age and whether she is IGHV mutated or unmutated. With better access to data these days, we know that FCR does not work well for unmutated patients. Hopefully, your hematologist is up on the latest news that specialists are now considering FCR only for a small population of CLL patients, mainly for the young and mutated. While it is a shorter course of treatment, it also can affect DNA changes that can lead to other cancers later on.

Most of us on Imbruvica have minimal and manageable symptoms, which I personally consider a small price to pay for being alive and feeling well.

Among other interviews that came out of the recent ASH meeting, here are two that might help you as you make this difficult decision:

patientpower.info/video/ash...

patientpower.info/video/con...

If you aren't a member of Patient Power, it is easy to join so you can take advantage of all the interviews and information.

I wish you and your wife well.

Sergi
Sergi
in reply to starsafta

Hi

She’s mutated 13q delation but has high risks of other cancers ( skin , bladder ) that’s why her doctor now thinks Ibrutinib is safer

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