STARTING VENCLEXTA - QUESTIONS

[Palmetto]

Doctor has given go ahead to begin Venclexta but I read that for at least 2 days before to be very well hydrated, drink at least 1.5 to 2 liters. Because of foot swelling cardiologist just started him on a strong diuretic. Will this affect the Venclexta?I did read somewhere that thiazide type diuretics or loop diuretics should not be used. He is taking Bumetanide. They want him to start tomorrow, but I think we should wait until he has had another day of more intense hydration especially since he has been trying not to drink as many liquids due to the swelling

. Anyone with experience that can relate? Thank you.

[lankisterguy Volunteer]

Hi Palmetto,

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Your question is complex and certainly needs expert medical advice, which we cannot provide. You should try to get the two doctors involved to talk to each other and give a coordinated answer. Allopurinol is often prescribed to reduce the Uric Acid level in combination with the high water intake - see: drugs.com/allopurinol.html. But how to coordinate that with his other drugs requires medical knowledge we lack.

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Another suggestion is to make certain that the recommended blood testing is done meticulously. Knowing the blood mineral levels ( Uric Acid, Phosphates, Potassium etc.) is very important for just before and after taking the first pills.

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These tests are often scheduled at 4 hours, 8 hours and 24 hours after the pills are taken. Getting the test results reported to the medical staff on a "stat" schedule is essential.

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Len

[Palmetto in reply to lankisterguy]

Great advice Len. Yes I have called to ask these questions but the closer monitoring is not something I would have known about, he isn't scheduled for blood work until the 8th of August, a week later. Thank you.

[lankisterguy Volunteer in reply to Palmetto]

Take a look at this page- venclextahcp.com/cll/dosing...

"Changes in blood chemistries consistent with TLS (Tumor Lysis Syndrome) that require prompt management can occur as early as 6 to 8 hours following the first dose and each dose increase"

See the chart - right column "Blood Chemistry Monitoring"

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Unfortunately those blood chemistry changes have no physical symptoms until the major organs (heart) start shutting down. So the 3-4 tests in the first 24 hours after each dose increase, especially the first two weeks at 20 mg and 50 mg are extremely important.

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Len

[MsLockYourPosts Passed Volunteer in reply to Palmetto]

People I know, when starting Venetoclax, have either been hospitalized for monitoring overnight on ramp up days, or required to stay in the day unit or nearby so that their labs could be checked during the day. Don't be afraid to refuse to have treatment started until you have answers to your questions about drug interactions and hydration. I would seriously question the fact that labs will not be monitored closely on ramp up days. The protocols for monitoring were developed because of problems, years ago in the phase 1 trial for this treatment, for patients who were not sufficiently hydrated and / or monitored for tumor lysis syndrome.

[jijic in reply to MsLockYourPosts]

Heh, here they just make you come in three days a week during the ramp up phase! On Wednesdays I would take the pill in the morning then come in for noon bloodwork; Thursdays I would wait for a call at 8am to tell me to take the pill, then come in for noon bloodwork; Fridays I would come in for 8am bloodwork. Considering my doc is a 25-minute subway ride away, it was not fun.

[MsLockYourPosts Passed Volunteer in reply to jijic]

But not nothing for a week. That is what's concerning. I'm sure that a consideration is what your labs look like going into your first day, especially how high your WBC / ALC is. I have no personal experience with venetoclax, but have followed several friends through their ramp up going back to the Phase 1 trial. The trial was actually shut down because of problems. The protocol when it was reopened involved hospitalization during the ramp up with IV fluids - so much hydration that patients were complaining about it being excessive. All of these years later there is a protocol that is more appropriate, and that considers the needs of individual patients rather than taking a one size fits all approach.

[Palmetto in reply to MsLockYourPosts]

Yes I am still concerned. He took the pill today around 4 p.m. and so far he seems fine. We had a family practice visit today and I asked if he would order labs in particular I am concerned too that his creatinine is elevated and GFR rate is below 40. The GP agreed he should be monitored but I can't get an appointment at any local Quest lab so I left a message for the oncology office to ask please if they would schedule for him in the morning, before he takes the second pill. His counts are very good. ALC is within totally normal limits, white count 5. Hemoglobin still just a bit below normal after the AIHA. I gave him a really good meal of chicken and linguini and just gave him late night mahi mahi sandwich to make sure his stomach is not empty. I am disappointed that the doctor himself has not spoken to us at all, just relayed through the medical assistant. I am thinking of just taking him to show up at the Cancer Center and have them call the doctor themselves if he doesn't do it first. This is very serious.

[MsLockYourPosts Passed Volunteer in reply to Palmetto]

I'm not sure where you are in the US. The Quest labs around me - Southern California - take walk ins, but you would have to wait for results unless they were ordered "stat". Is the doctor a CLL specialist? I would be looking for someone new, based on what you have shared. There is a reason for the protocol! It has to do with safety. You should not need to instruct the doctor about it. This m Akers me angry for you!

[Palmetto in reply to MsLockYourPosts]

We left this doctor last year over his jumping the gun on reason to treat when everything was fine. We switched to the CLL specialist at Sylvester Cancer Center in Miami and he never needed treatment until he came down with the AIHA really severe in June. That doctor never helped me at all to get him admitted at the University of Miami Hospital which is where they treat. He never personally returned my calls and it was like pulling teeth to get through to him through his staff. Then when we had to treat the AIHA right away I had to let him go back to the prior hospital which is Baptist here in Miami and he got assigned to his old oncologist we had had for 6 years. He seemed much more willing to discuss options this time and decided on this regimen during a phone discussion. I don't think he has treated anyone with Venclexta since it is so new and I have not spoken to him directly at all in the last few days all talk only through the medical assistant, not even the PA! I am trying not to panic especially since his CLL doesn't present as bulky nodes and his lymphocyte count is 43 per cent total and about 1.3 ALC and ANC is almost 2. so I don't think there is a lot of CLL active right now but his kidney function is not the best. I will get him somewhere first thing in the morning but there should be no reason not to have it done at the cancer institute at Baptist. Husband has not only Medicare but also the top supplement with Blue Cross so simple blood tests shouldn't be so difficult to ask for and get. Thank you so much for your advice and concern. Means a lot. I especially got scared at the fact there are no symptoms until it is too late! I will be afraid to go to sleep. Thank goodness he has had no nausea or side effects from this first dose. Keeping fingers crossed. Stay safe.

[CLLerinOz Administrator in reply to Palmetto]

Palmetto I’m sorry to read that you’re going through such a stressful time. I hope you’ll let us know how things are when you know more and we can breathe a collective sigh of relief with you.

[Palmetto in reply to CLLerinOz]

Thank you again for everything. Update and great news. Someone at scheduling didn't do their job and I had to call again but this time got through to the medical assistant and they did take my request seriously and had made a lab appointment today for him. The best news is that everything is perfect! Uric acid still low, creatinine actually better than Monday and potassium and BUN all completely within normal limits and the GFR actually got better from 39 up to 46 so he did not get any ill effects from the Venclexta. I believe this is because his CLL is at a very low point right now and thankfully I got them to not give him the 3 weeks of Gazyva infusions before he started it. I can only imagine how far his white counts would be down at this point. Today white count is 5.6. Again I appreciate all the great advice and concern that is through this board. Will keep you all posted on how well he does on this combo therapy. Stay healthy everyone.

[CLLerinOz Administrator in reply to Palmetto]

Fantastic! Great to hear.

[MsLockYourPosts Passed Volunteer in reply to Palmetto]

Great news! I'm sure you will sleep better tonight!

[Palmetto in reply to MsLockYourPosts]

I appreciate so much your advice. I posted below about today's outcome. All good!

[jijic]

You should definitely communicate all of this to the specialist but I will add that it's not just the 2 days prior - you're meant to drink 1.5-2 liters of water every single day during the ramp-up phase.