Husband's 3rd week of "O" infusions, getting ready for the "V" ramp up!

[lisakc1]

After the third "O" infusion, his numbers look amazing, WBC 3.0, Hemoglobin 12.7, Platelets rising at 132, Absolute Lymphocytes .72, Absolute Neutrophils 1.91.

He had a slight reaction to the "O" after his first infusion, nausea, and low blood oxygen levels, but has done great since then, only extreme lethargy which his specialist cannot explain, perhaps he needs more electrolytes.

As a result, his specialist has met with his colleagues and is NOT recommending a hospital stay for the "V" ramp-up. On the day of the first dose, he will go in to the medical center, get labs, go home take the 20mg dose, and drink tons of water (about 60 Oz), then return to the center for more labs that afternoon and the following morning. I am extremely nervous about this protocol, but I was told that this IS the protocol for people who respond to the "O" treatment as he has.

I will be standing by in case the ER run or 911 call has to be made. 😬

Can't wait to complete this ramp-up and have him stabilized on the full dose of both "O" and "V". I would love to hear from anyone else who has had a similar protocol!

Many thanks to this group for all of your invaluable help and support! I will continue to document our journey to share with others that may have similar circumstances!😀

[SofiaDeo]

Congrats! Many on O have commented about weakness after infusions, it seems moderately common. IMO if one is killing off CLL cells, and metabolizing, then excreting them, that uses a tremendous amount of body resources and energy. So it's no wonder one feels tired and is weak if trying to do physical activity.

Now that tumor load is very low according to ALC, unless he had a bunch of internal nodes that are enlarged, it is *not* usual for hospitalization for venetoclax induction. There are specific tumor loads as measured by ALC (not WBC) and lymph node size, plus certain comorbidities, that determines whether or not hospitalization is recommended. I'll mention that my CLL specialist likes to hospitalize if spleen is enlarged, and his preference is not in the protocol specifically. He feels a spleen is just a large lymph node, so if it is enlarged he asks if you are willing to go in hospital. My 22cm spleen almost completely emptied within the first few days of the initial dose and I was happy I was in hospital. So find out if his spleen is still enlarged, and possibly have a conversation. Otherwise, the risk of TLS is so low, the risks of being in the hospital are considered higher.

Venclexta induction recommendations

[lisakc1 in reply to SofiaDeo]

Thank you! His Spleen and lymph nodes are still slightly enlarged, although not as bad as before treatment, and lymph nodes are now palpable, which is a good sign. Have to trust the specialists and hope that things go smoothly next week!

[SofiaDeo in reply to lisakc1]

I also had to hospitalize for Week 2. If I had been very close to the hospital, it would have been much more comfortable to just go home instead of dealing with loss of sleep, etc. from being in hospital. So unless this "going to get labs" is a huge hassle, IMO it's better to be home, especially in Covid times.

[Poodle2]

All the best. I'm sure he will be fine, the monitoring is in place to prevent TLS. I'm at one of the biggest cancer hospitals in London and probably UK and my consultant told me that she couldn't remember a single case of TLS as they are just very good at preventing it, that's reassuring to hear I think. If there are any numbers they are concerned about, they will schedule an extra blood draw between the dose escalation days.

Let us know how he gets on. I have finished my V ramp up and am on a full dose, meeting my consultant tomorrow just before cycle 3 of O.

[lankisterguy Volunteer]

Hi lisakc1,

-

As the others have commented, the risk of problems from Venetoclax ramp up are now rare due to the 5 separate does increases, and the blood testing. The water consumption is important, as is getting feedback from a medical professional who is receiving the blood test results.

-

The problems and fatalities that occurred in early clinical trials for Venetoclax were from sudden undiscovered increases in blood minerals (uric acid, Lactate Dehydrogenase (LDH), blood magnesium, calcium, and phosphorous). Unfortunately any increases rarely cause symptoms, so getting the test results to a nurse, PA, NP etc. is the key to preventing issues.

-

Len

[spi3]

My hubby did not stay in the hospital but we stayed at a motel just in case when he took the 400 dose just in case. With the ramp up protocol he did fine. I'm sure your husband will too. My heart goes out to you too (you sound like me when we first started my husband's treatments- I learned to trust the Nurse Practioner -she's very experienced and knowledgeable and lets me email her daily with questions--however as time goes on I have few) - you are a wonderful advocate for your hubby and both of you will be in my prayers- good luck

[lisakc1]

Thank you so much! We live close to the hospital, my daughter is coming down so that we can be certain someone has an eye on him. I am most concerned about the first 2 weeks, we will think positive thoughts and hope that next week is uneventful! Thank you again!