CLL America from Patient Power
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Good News from the Doctor Venetoclax is working!

I started my Venetoclax journey September 7th. A few bumps on the way up from 20mgs. to 400 mgs. And a few more bumps at 400mgs with lots of fatigue and back pain. Dr Mato lowered my dose 10 days ago to 300mgs and that has made a world of difference. Feeling stronger and not as fatigued. Feeling more like me again! I went to UpENN this past Friday and all my blood work looks great. Dr. will do a PET Scan in a couple months to check on those pesky lymph nodes, but he said I'm having a great response to Venetoclax! On the road to remission and hoping it lasts longer than previous treatments, but whatever time I get from it, I'm grateful!

So glad for this site, this community of kindred spirits who fight the good fight every day and then share their knowledge with others. I can truly say that I found the courage to confront my doctor about the choice of treatment options, (he was pushing Ibrutinib and I wanted Venetoclax) and recently about lowering the the dosage due to side effects, all because of the great information I received here!

I am very grateful for all yourencouragement and support. May we all live long and healthily!

Renee

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Venetoclax is very good!!

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I’m on the Ibrutinib + Venetoclax trial and my numbers are looking great. Only downside is the Venetoclax has completely drained my energy level. At my last appointment 2 months ago I was lowered to 200mg and it didn’t help much. How did your fatigue feel? I can only make it a couple hours throughout the day then need an hour or so nap. I just want this to pass. At 36 years old I need the energy to keep up with my family and work.

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Sorry to hear you're not doing better on the lower dose. But you are 2 powerful meds p, I'd bet the combo is doing a number on your energy levels. I was able to work but it was difficult. I would get tired with very little physical activity. And the pain in my back and headache would start. This felt worse than the fatigue from the disease. I'm doing better but not ready to run a marathon by any stretch of the imagination. I hope you regain your strength and energy soon.

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Thank you. Me too

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I have been on Ibrutinib ( Imbruvica) for 3 years and my numbers are great. Side effects are bruising and fatigue but I keep going. My big problem now is cost. As I turn 65 next month, I have to go on Medicare as I am working 2 part time jobs and don't have insurance thru work. Before Medicare, I was eligible for the You and I program but now, I don't know what to do. Who can afford $11,000 a month? I am applying with the Leukemia and Lymphomas Society but that would only be $5000 if approved. I know after 1 month, I would be in the donut hole and them the catastrophic level but still the cost is several hundred a month. Has anyone over 65 with Medicare found another solution?

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I'd love to know what you find out about coverage. I turn 65 in a year and a half and will be the same position. My goal was to get into a durable remission before age65 and then see if I could come off Ven. Others have come off when I they achieved MRD. I was hoping for the same. Then if the CLL returns, I would have to see what other treatment option were a good fit for my CLL and finances. I am also realistic, I this is disease is incurable at least right now. My thoughts are I don't want to bankrupt my family if the it is not curable. But we should try to look into as many grants as possible to do all we can to stay well until a cure is found.

Renee

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I am on Medicare with a supplement and have been on Venetoclax since February with good results. My numbers are good and my spleen is normal in size. In regards to cost, Medicare and the supplement cover all but about 10,000 per year-not great but it isn’t 11,000per month.

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My CLL expert doctor was able to enroll me in a program from Genentech Venclexta Foundation and they provide the pills at absolutely NO cost to me. phone 800 530 3083

I am not on a trial and getting the Ven "off label", so my Medicare Part D was hesitant.

Len

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Get Silver Spring insurance for Medicare. Plan D.They pay +10000 $ you must pay Co-payments 566$ And applay for help with Co-p to few Foundations like J&J.

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I am on I for 3 years with help from PAN I did not have to pay anything. But recently I was told to pay 566$ as a Co-payment. But when I called for refill they raised Co-pay to 2966$ which is my and my husband SS. This is my dilemma: stop treatment or what? Maybe someone has the answer.

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I too am on Medicare and have a supplement. I have Humana for my prescription meds. I have the PAN grant as well and between my prescription insurance and grant I don’t pay anything. Check with your RX and find out if they can apply to renew your grant.

It’s horrible that besides dealing with this dreadful desease we have to deal with financing the much needed meds to stay relatively healthy. Good luck I hope you can get your grant back.

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Congratulations! Please check out the CLL Society website. I will be providing an article for the Quarterly CLL Society Tribune on Venetoclax, for the December issue. My last article was on Ibrutinib in the September issue. I'm both a CLL patient and a pharmacist. My writing is a way of giving back for the great care I get.

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Hi Reneé

My father just started venetoclax on Tuesday and finished up his first 3-day stint in the hospital for monitoring. He is also a patient of Dr. Mato.

I was wondering if you could share any of your experience from weeks 1-5 that I️ could share with him that will better prepare us for what’s ahead. I️ understand everyone reacts differently to these drugs, but you can never have enough information.

Currently, he just feels “off” or “shaky” as he puts it, almost a sensation of low blood sugar. Seems weak and certainly fatigued.

Again, just looking for some pointers from your experience.

Also, looks like we’ll be in search of a new oncologist as Dr Mato is moving on. Will be tough to replace him

Thanks.

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I am in week 4 of the venetoclax ramp-up. Fortunately, I had a low enough level of the disease that I was able to start without hospitalization, just blood checks. The WBC is now low, but my platelets have increased to the normal range. Blood chemistry looks normal. As for side effects, just fatigue this week with the 200 mg dose. Also, some dizziness after bending over, like low blood sugar.

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Drink lots of water each day. BP could be low as Ven affects the kidneys and if you get dehydrated your BP drops. keep a snack with you. I think my BS drops when very active on Ven and I get lightheaded. I couldn't tolerate 400mgs. due to extreme fatihgue. Dr. dropped me to 300mgs. and Im doing better.

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Hi Stevediam;

I have had and some days still experience very similar side effects. During ramp up of Ven, I drank at least 80 ounces of water in addition to the IVs. I shill have to drink at least 60 ounces a day and half of that before and just after taking the Ven in the morning. If don't my BP is low and I feel fatigued

. I also get low BS, and keep a protein bar with me at all times. If I am going to very physically active, I have to have a snack and drink more water. I did get tumor lysis week 2 on 50mgs,. but Dr. Mato gave me more IV fluids that round and all good. My first round was rough after I left the hospital. Low grade fever, chills, bloating, diarrhea. I was miserable. By week 3, things were better. I got up to 400mgs. But couldn't tolerate the dose. Major fatigue, back pain, headache more weight loss. Dr. Mato reduced dose to 300mgs and Im doing much better. I am now 2 months on Ven and tolerating it well and my numbers are good. My energy is returning and Im feeling more myself. So grateful!

I wish you dad well. Let me know if I you have any other questions. Happy to share my experience.

Renee

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Hi Reneesusan

I found your post helpful. I am on Ibrutinib right now and will begin Venetoclax in about 4 weeks. Feeling good but lots of leg cramps and still have fatigue. Will keep all posted.

Jo

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glad you are doing well

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