V+O treatment

[Cosby]

Hi I am here posting to find out information about V+0 for my husband who has CLL delection 13. His WBC count keeps on going higher and higher. It is currently 145,000 and he is extremely fatigued. Everything else looks OK. The doctor wants to start him on V+0 soon and we think it might be a good idea. Love to have the input of the people on this blog. By the way, I also have CLL deletion 14 and I’m a retired RN. He has had his for two years and I’ve had mine for three years. So far my labs are very stable and as well as I am. I started with enlarged lymph nodes everywhere, but those have all flattened out. Another question is the cost for these medications. We are on Medicare with United as a supplemental.

[AussieNeil Administrator]

Hi Cosby and welcome to our community.

You'll find lots of previously shared information on this commonly used CLL treatment here, including this recent post: healthunlocked.com/cllsuppo... You'll also see some other replies in the Related Post section, which you can find below your post if viewing the site on a smartphone or tablet and to the right of the post if you are using a desktop or laptop computer. Don't be surprised if your husband has an infusion reaction to his first Gazyva/obinutuzumab infusion as it's fairly common. Happened to me and I sailed through the next 8 infusions and I'm coming up 4 years in remission.

With respect to covering the cost with Medicare with United as a supplemental, I expect you'll get more replies if you edit your post so that it is private to just this community, rather than being accessible by anyone who is online. This post explains about the difference and how to edit your post accordingly: healthunlocked.com/cllsuppo...

Neil

[Cosby in reply to AussieNeil]

Thanks for the info. I’m still not quite clear how to navigate the site but I’m sure it will become clearer each day. The information about the first infusion is very helpful. If we have a problem, I won’t be as anxious or worried about it after hearing your experience.

[AussieNeil Administrator in reply to Cosby]

You'll find lots of helpful information in our Pinned Posts section healthunlocked.com/cllsuppo... including this post on how to navigate HealthUnlocked

healthunlocked.com/cllsuppo...

[Adlucy]

I am TP53 mutated and have 13 q deletion. Diagnosed in September 2020 and on watch and wait until May this year. V and O treatment started in June because of lymphocytes doubling in six months and haemglobin and platelets going into the red.

So far so good. Only reaction to date was during first infusion of Obinutizimab when I got very cold and had lower back pain. I was also wiped out after that first infusion.

I wish you all the very best.

.

[lankisterguy Volunteer]

Hi Cosby,

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As AussieNeil says, we have had many postings on V&O treatment, you can find 5 of them in the "Related Posts" box on this page- upper right column on computer screens.

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The first 2 months of treatment will be extremely busy with many trips to the hospital- see the diagram attached.

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For the Medicare costs, with your Medicare Part B & United supplement you should not have any out of pocket costs for everything done at the hospital or administered by a medical professional (e.g. the obinutuzumab and all the testing, scans etc.)

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The Venetoclax drugs taken daily at home are covered by your Medicare Part D policy, and you should be researching at

medicare.gov/plan-compare/#...

to find the best plan for your husband to get venetoclax next year ( 4 tablets each day or 120 per month )

There will be a copay on your Part D insurance, so pick the plan for each year that has the lowest total annual cost- the link above is the best way to find that Part D plan.

Then ask your husband's CLL expert doctor if they have someone on staff to aid you in finding copay assistance, or try the specialty pharmacy that supplies venetoclax, and finally try the LLS.org to see if they can find assistance for you. The good news is that in 2024 the copay for any of the targeted drugs will likely be around $5,000 for the year and in 2025 it should drop to about $2,000 per year.

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Len

Ven & Obin dosing

[lankisterguy Volunteer in reply to lankisterguy]

Here is the testing diagram

Venetoclax risk & testing protocol

[Cosby in reply to lankisterguy]

Thank you for some very useful information especially that the first two months will be very busy.

[Analeese]

My case is very similar to yours. My husband had CMML and I have CLL. I have had O and V treatment with the same insurance coverage that you have. I paid zero out-of-pocket because the pharmacy at my hospital found assistance for the V that had a co-pay. They were amazing with their help and I had to do nothing except answer a couple of questions. Consult with your specialty pharmacy before your husband starts treatment. Good luck with your husband’s treatment and I hope that your watch and wait goes on for a very long time. I am UMRD after finishing treatment a year and a half ago.

[Cosby in reply to Analeese]

Thanks, your information is so helpful. And it’s wonderful to hear that you are UMRD. So far everyone has been very helpful but my husband is a very anxious patient, so it will be interesting to see how he navigates this.

[Skyshark in reply to Cosby]

If he is high risk TLS I suggest a PICC line. My hospital used the Venetoclax blood test schedule for the first 2 days of Obin, came as surprise as they didn't tell me and I didn't ask. 10 blood tests in 3 days, 12 in a week. Vampires visit at 6am!

[Cosby]

That is a good question to ask about the picc line. I don’t think he is high risk TSL. He has no enlarged lymph nodes but he does have the elevated WBC of 143,000. He would definitely be rattled if suddenly they wanted to do a picc line. Knowing ahead of time eases the anxiety for sure.