Continue Vetoclax from 20mg to 100mg, Day 5 s... - CLL Support

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Continue Vetoclax from 20mg to 100mg, Day 5 stopped due to high Lactic Acid

wwd-bill profile image
21 Replies

I got lots of helpful information and encouragement here and really appreciate sharing.

My lovely hubby, Bill, suffered side-effects from stopping ibruvica to starting Venetoclax. He did the blood test on last Friday after day 5 100mg. The Lactic Acid Valu was very high about 9 (normal value is less 2), The Dr kept him in the hospital because of the high risk of life-threatening which can cause heart stop. This Sat morning, the Dr. asked him stopped Venetoclax, and gave him IV, the afternoon blood test result showed that the Lactic Acid went up to 11. The Dr. did not know what factors caused the Lactic Acid so high. Kidney and Liver function is ok by now.

Looking forward to the related sharing and hope to get enouragement to continue Venetoclax Journey. Thanks.

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21 Replies
UK-Sparky profile image
UK-Sparky

A challenging time for you both and thanks for keeping us posted, my thoughts and prayers for a successful solution are with you both

UK Marc

wwd-bill profile image
wwd-bill in reply toUK-Sparky

Thank you for your prayers.

David73 profile image
David73

Hi wwd-bill

I was so sorry to hear of your husband's experience which highlights the potential difficulties of these new powerful treatments. I hope the medics are able to overcome the Lactic Acid problem soon and your husband can progress safely.

David

wwd-bill profile image
wwd-bill in reply toDavid73

I hope so the new powerful medicine can help overcome and works well.

Jm954 profile image
Jm954Administrator

It sounds as though Bill is in experienced hands with his doctors and hopefully this will just be a small speed bump along the road to wellbeing.

We will be thinking of you both, please let us know how things go.

wwd-bill profile image
wwd-bill in reply toJm954

Must hang in there. No other way can help by now. Thanks.

Justasheet1 profile image
Justasheet1

I believe a drug called allopurinol is routinely given prophylacticly to prevent tumor lysis. An adverse effect of this drug can be lactic acidosis.

Is that a possibility here?

Is he on this med?

Jeff

wwd-bill profile image
wwd-bill in reply toJustasheet1

He does take allopurinol every day for preventing TLS. Thank you very much for your very helpful informational. Will check this medicine side effect.

MelioraDay profile image
MelioraDay

Are you sure it was lactic acid they were concerned about and not potassium? Did pH fall and they were concerned about lactic acidosis? They do not routinely check lactic acid as part of the Venetoclax ramp up when looking for tumor lysis syndrome unless there is some other comorbidity they are concerned about.

wwd-bill profile image
wwd-bill in reply toMelioraDay

The doctor told us stop Venetocalx due to the high lactic acid. The blood test result showed that the others were improved and potassium value is normal, but only Lactic Acid value increased.

Bubnojay profile image
Bubnojay

Hi wwd-bil

I hope that there has been some improvement today. You must be so worried and it is hard when there is nothing you can do to help.

Wish we had all the answers here, and I think I am not alone in feeling sad that we are not able to help.

I hope stopping the drug soon sees an improvement, and treatment is able to continue.

I wish you strength to see you through this period and hope that soon we will all be sharing in your better news.

Best wishes,

Bubnjay1

wwd-bill profile image
wwd-bill in reply toBubnojay

Today, the blood test result: Lactic Acid:7, lower than yesterday. Thank you and all the friends here for all your encouragement, and kind words.

Justasheet1 profile image
Justasheet1 in reply towwd-bill

WWD,

Sounds like the numbers are finally going in the right direction.

Jeff

artkula profile image
artkula

My dad had a high lactic acid level during the first BR chemo. He is in a relapsed stage and is on the venetoclax trial. He told about lactic acidosis history and the doctor prescribed the medicine against it prior to starting venetoclax at its highest recommended dosage. Not 100% sure but seems as it was in the protocol of the trial since they need to follow it exactly. He is going from 20 to 50 mg this week. Lactic acid level is under control so far.

wwd-bill profile image
wwd-bill in reply toartkula

Hello Artkula, Thank you so much for sharing your dad's information. Would you mind telling me the prescribed medicine? if this can help control my hubby's Lactic Acid level, then he can continue Venetoclax. My hubby is the first patient in the city which has 3 hospitals to take Venetoclax. Looking forward to your replying. Thank you very much!!!

artkula profile image
artkula in reply towwd-bill

Sure! He takes Allopurinol 300mg twice a day. It is actually mentioned here

venclexta.com/content/dam/g...

Make sure you discuss this option with your doctor.

wwd-bill profile image
wwd-bill in reply toartkula

Thank you so much for sharing the information. My hubby also takes this medicine which is used for anti-hyperuricecims and has the risk to increase Lactic Acide that might cause life-threatening. What cause My hubby 's high Lactic acid did not know, but high risk. The only way continue to Venetoclax.

artkula profile image
artkula in reply towwd-bill

Lactic acidosis is one of the symptoms of tumor lysis syndrome.

en.wikipedia.org/wiki/Tumor...

Allopurinol, on the other hand, is given to reduce uric acid load due to hyperuricosuria, which is yet another tumor lysis syndrome. I am not really sure why the doctor decided to increase the dosage of allopurinol in response to the lactic acidosis history. Perhaps there is a correlation?

You are right stating that allopurinol has lactic acidosis among the listed *rare* side effects. The percentage of Allopurinol patients where lactic acidosis is actually a reported side effect is 0.4301% (very small) according to FDA research report.

factmed.com/study-ALLOPURIN...

Whatever the case, I hope your partner will get the help needed and resume the treatment soon.

wwd-bill profile image
wwd-bill in reply toartkula

Appreciate your helpful sharing info. The dose your dad took are double. That is 600mg/per day. May this help reduce Lactic Acid. Would you mind asking the doctor about the side-effect concerns and high dose of allopurinol functions? Thank you so much!

artkula profile image
artkula in reply towwd-bill

He met "certain conditions" which, apart from the lactic acid history, include his age and the fact he has nephrolithiasis. In addition to this drug, they use a dropper to assist the hydration when they increase the dosage of Venetoclax.

I wished I could be more specific in your case, but be aware that the blood chemistry is a very complex matter and there is no general recommendations. Tumor lysis syndromes is a known problem with Venetoclax, but in most of the cases they can cope with them. In the document I referred to earlier, they describe the procedure of temporary interruption and resuming the treatment. Your doctor can get a help from the AbbVie. It is an expensive drug and they provide the comprehensive support.

wwd-bill profile image
wwd-bill in reply toartkula

Your information is very helpful. Thank you again. Today my hubby will see doctor and hope to continue. All the best to you.

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