Venetoclax

[jtaeross]

After 3 years, I'm failing ibrutinib.

I will start Venetoclax on Monday. Any support out there?

17p

[cllady01 Former Volunteer]

jt, I don't have any experience with Venetoclax, but in the right side panel on this page (at top right) see Related Posts.

I am so sorry to hear that ibrutinib is no long viable for you. Here's hoping the Venetoclax does the job.

I am sure there will be others who have some experience with Venetoclax will be along to give you more support. Meanwhile, I'll be thinking about you as you begin the new venture, Monday. Best wishes, and keep us posted.

[jtaeross in reply to cllady01]

Thank you very much. The relapse is happening very quickly.

[ap64]

Thinking of u. No experience to offer just moral support and prayers for success. This is not the best weekend to get info from others what with the holiday in the US.

[jtaeross in reply to ap64]

Thank you

[MsLockYourPosts Passed Volunteer]

Repost this after the weekend and include that you are failing Ibrutinib in your subject line. You might also want to post this on CLLForum.com and do a search. There are a few people there who have made this switch successfully.

Best of luck with your new treatment!

Pat

[jtaeross in reply to MsLockYourPosts]

Good idea! Thank you

[thompsonellen]

I'm 17p too. I'm on a clinical trial that includes venetoclax and Ibrutinib and obinutuxumab. The reason I did the trial is I was concerned about a potentially quick relapse. My doctor at Penn thought I was out of my mind to not start with Ibrutinib only.

Venetoclax works more deeply than Ibrutinib which I understands controls CLL but never gets you MRD-. Since 17p deletion means our bodies don't know how to kill cancer cells, we are more likely to relapse.

They ramp up the venetoclax dosage over 5 weeks and all those trips are a pain. I was at high risk for Timor Lydia so I was an inpatient for the first two weeks. It stink but better safe than sorry.

I feel like you will have better luck with venetoclax and it should give you the running room you need until the next thing that can help us is market ready.

I will be thinking of you this week. Please feel to reach out for more support.

[jtaeross in reply to thompsonellen]

Here I am.... reaching for support

You mean business with your drug combo.!

One of the concerns that I DO have is that I will not be in the hospital. I begged for 6 hours in the chemo. room (supervision) but after 6 hours, I'm on my own. I have Kaiser in Walnut Creek, CA.

I'm at low-medium risk for TLS. Regardless, I'd prefer to be monitored closely.

[thompsonellen in reply to jtaeross]

I'm at OSU and that was not the protocol. We had to stay overnight and get blood work the next day all 5 weeks. Drink a gigantic amount of water. Ask about how they will monitor your blood to make sure you aren't lysing. I was high risk and I was fine but I was on hydration for almost 2 days. My ALC was high and I was still bulky and I was ok. Only the first two weeks are risky.

[jtaeross in reply to thompsonellen]

I'd prefer to be hospitalized. I live an hour away from the hospital and am single. I have 6 hours to scream about my preference in the chemo. room tomorrow. That was our compromise. Hydration and 6 hours of monitoring. It's a good start.

[maggiesgrandmom in reply to thompsonellen]

HI jtaeross and thompsonellen!

This is all I am thinking about this Thanksgiving weekend. I had to stop Ibrutinib last week because of too many cardiac symptoms. They put me on three cardiac drugs plus 4 potassium pills a day to try to control the cardiac symptoms, it was getting ridiculous.

Next is another round of gazyva (which does help) and then on to venetoclax. My nice hemonc Dr. says to see when the symptoms start coming back, then start the next treatment. I also go to Porter at Penn for backup. Thompsonellen who do you see at Penn? Did you get the Venetoclax at Penn? Did you stay in the hospital to start it? How is it working?

Jtaeross please keep everyone up to date on how you are doing. I pray you have a quick response (but not too quick! LOL).

God bless you!

Janice

[thompsonellen in reply to maggiesgrandmom]

Hi Janice, no I didn't see Dr. Porter. I saw Dr. Mato. I was referred by the local hematologist at Bryn Mawr Hospital. I miraculously got an apt with Dr. Byrd for a third opinion and I am in a trial there. Dr. Mato didn't take it well and so now I don't have a local doctor which is something I need to deal with in the next 6 months. I did stay in the hospital the first two weeks and I hope Jtaeross doesn't need it since it's not an option. By the way most people didn't do inpatient but there was post day testing. I went from 83% CLL to MRD positive after 3 months and .4% after 4 months. The trial is 14 months. Friends say I'm the healthiest sick person they know so I'm doing well. Just grateful I have savings do I can pay for the huge amount of travel.

[jtaeross in reply to thompsonellen]

That's what my friends said to me on ibrutinib!

[jtaeross in reply to maggiesgrandmom]

Thank you. I will keep everybody up to date. Good luck to you as well. Quite a ride, right?

[Bubnojay]

No experience jtaeross to comment, how very disappointing when treatment fails, but I can wish you every success on the Ventoclax, may it work well and give you years of feeling great.

Bubnjay1

[Corin850]

Hi

I did ibrutinib for nine months. Stopped due to colitis. Venetoclax has worked great since. Mrd

I expect you will do well

Corin

[jtaeross in reply to Corin850]

Congratulations! Glad to hear you are MRD. Are you able to carry on with your previous (healthy part) lifestyle? I'm a 1st grade teacher.

[Corin850 in reply to jtaeross]

Yes

[Korstiaan]

I am on a trial with Venetoclax with very positive results. My last BMB showed a CLL% of 0.1

See my post from August:

healthunlocked.com/cllsuppo...

Best wishes,

Korstiaan

[jtaeross in reply to Korstiaan]

You give me hope! Thank you!

[lankisterguy Volunteer]

I was on Idelalisib for 30 months, and progressed, switched to Ibrutinib in 2015 but got a painful rash, stopped Ibrutinib in Feb 2016 and my ALC was doubling every 3 months.

Started Venetoclax in June 2016. Nodes disappeared and bloods were normal in July - only 3 weeks of the 5 week dose escalation. Have had NO side effects, my energy and enjoyment of life returned. Will have a MRD test in 2 days and if MRD neg in blood will have BMB MRD in February 2017.

The dose escalation takes time and attention from an expert team, especially if your nodes or ALC are significant, so don't cut any corners- follow all the steps scrupulously.

Len

Trisomy 12 UnMutated

[Bubnojay in reply to lankisterguy]

That's really good news Len, so pleased for you, sure to give jtaeross the lift and optimism to plough ahead with treatment.

May the ventoclax continue to control the CLL for very many years.

Best wishes

Bubnjay1

[jtaeross in reply to lankisterguy]

Thank you very much for responding. Your story gives me hope. Congratulations on your health. Good luck on MRD neg. Keep me posted.

[virdieblue]

I'm high risk, on Ibrutinib 5 months now and holding my breathe as time passes. Please let us know how Venetoclax works for you. You are my pathfinder in this.

[jtaeross in reply to virdieblue]

I will keep active on this post. I lasted 3 GLORIOUS years on ibrutinib. Very high risk as well.

[virdieblue in reply to jtaeross]

I will follow your journey...

[joe_C]

Hi J,

Venetoclax turned out to be a miracle drug for me. Very minimal side effects being on it for 5 months. They provide a well controlled ramp up of the dosages of the pills and yes I was in the hospital over night for the the first two dosages. (Better safe than sorry). Within the first two weeks my blood counts were just about normal! Now in remission. Hang in there, there is hope. All the best, Joe

[jtaeross]

Thank you, Joe. I'm really hoping for another miracle. Ibrutinib was my first miracle.

[pkpayne]

Jtaeross, I don't have any experience with Venetoclax but I pray that it will be your answer. Please keep us posted. Best wishes!

[eggemma]

I wish you all the best. In which country do you live? Ventoclax is the very best drug. I am also 17p del. I am on idealisib, doing well so far. I heard excellent news about Ventoclax. I was offered Ventoclax on a trial in Germany.

They have to start with low dosage and then increase over the weeks. There is risk about tumor lysis.

love Emma

[jtaeross in reply to eggemma]

I'm in USA California

[lapermone]

Not 17p, tho I doubt your experience with or while on the drug would be vastly different.

So far, 0ne month, I'm doing ok. Having miserably failed both IBRUTINIB and idelasib I began veneta with a heavy load - 90% cll in marrow. I was told by two specialists that considering my load I'd have to do my dose escalations in the hospital. About to start the "real dose" as my current acting specialist calls the 400mg per day. I've had mild symptoms of tumor lysis, but under control with IV fluids and one dose of rasburicase - the anti Uric acid drug, also IV. Uric acid is again high. Luckily I experience no gout symptoms but am reminded that kidney damage can be fairly silent at first.

Otherwise m, some nausea and loss of normal apetite, bloating and fatigue are what I've experienced. That and the annoying protocols of being in a hospital three days a week. But if it works, .....

Flow cytometry showed a dramatic lowering of percent of CLL but I'm told it's too soon to conclude success - WBC was 1.2 at the start, now 1.6 Platelets up to 72 from 56 Nodes were never large but a few seem smaller My cll has always been a non leukemic lymphoma but definitely cll So I'd not use my bloods as indicators for a typical case I'm 11q, and a few other newer bad deletions, and unmutated, missing ATM and zap 70 pos 90%

Not sure this is useful but based on others, I think we can be hopeful that with proper supervision this may be succcessful for those of us who've not had a lot Wishing you the best Beth

[jtaeross in reply to lapermone]

Thank you for your reply. We can all be grateful this drug has been invented. Seems like you're responding. Where are you?

[lapermone in reply to jtaeross]

Yes, and for those who paved the way.

[lapermone in reply to lapermone]

I'm in New York, traveling 100 miles each way for treatment in New York City, mount sinai hospital under JOSHUA BRODY md. director of their lymphoma research department. Where are you going to be treated?

[jtaeross in reply to lapermone]

Wow. That's quite a journey you have to make especially when you're not feeling very well. I live in California - 45min. away from San Francisco. I'm lucky to have UCSF and Stanford right in my backyard. However, I'm a Kaiser patient.

[lapermone in reply to jtaeross]

I hope that's not a terrible thing to be?? You are indeed fortunate to. Be so close to such a great group. The distance here also means they should something go bump in the night, or over a holiday I'd be up a creek

We all have a speed bump it seems. I guess we take the good with the bad. If there's another way I haven't found it yet

Wishing you a good journey - hope you'll keep us current

Best. Beth

[lapermone]

Yes, how could I forget. IV and drinking what seem like gallons of water. B

[Peggy4]

Just wanted to add my good wishes as you move on to the next step.

Peggy

[jtaeross in reply to Peggy4]

Thank you, Peggy

[Jill4]

Just sending hugs and best wishes for a great outcome. We are all rooting for you.

[jtaeross in reply to Jill4]

Thank you so much!

[thompsonellen]

Thinking of you. How did it go today?

[jtaeross in reply to thompsonellen]

I'm finally home!!! I made it! I kind of feel better than when I went in! I have a great appetite... I'm very skinny. I go to the hospital for early morning labs. All is well so far. Thank you for asking.

[thompsonellen in reply to jtaeross]

Awesome! Take advantage of your appetite and enjoy lots of something delicious. Wishing you smooth sailing on tomorrow's labs.

[jtaeross]

I completed my first day on Venetoclax! 20mg. So far, so good. I have a great appetite! Labs are "off" and that has me worried but I will go to the hospital early in the morning before my next dose. I'll keep in touch. Thank you for all of the support.

Jody

[jtaeross]

Day 2: Uneventful

I went to the lab to get my blood drawn. I'm doing better than before Venetoclax. I do have a headache. I have an unusual appetite. I can't stop eating which is good for me because I'm underweight. I'm tired.

[jtaeross]

July 2017 update: I'm still alive and doing well. I was able to return to teaching (with accommodations) in April. I was 5 months on disability getting adjusted to Venetoclax. The only side effects I have are migraine sensitivity and fatigue. My doc. is trying me on a very low dose of dexedrine to keep me in the game of teaching.

[Mcpill]

Such wonderful news! Really not sure how I missed this post, as I have been looking for you.I hope that you continue to improve and feel better every day. I have an appointment on the 21st to follow up on switching to Venetoclax. The doctor has been encouraging me to do so, but I have been nervous. Finally, the side effects are too burdensome, so hopefully this will all go well. Thanks for all your many postings giving me courage! All best wishes!

[Hoffy]

I am 17p deleted and on V plus I.

V is very good.

You should hopefully do well .

I am MRD negative in the blood after 9 months. CR on MRI.

[Sam-1]

Hi fellow what you mean by MRD negative, I found almost every one respond well on venetoclax, good luck.