I will be starting the Ibrutinib plus Venetoclax trial at MDA. My platelets have dropped from around 150 to 28 in just a couple of months. My WBC is about 40 with ALC about 32. From what I really know now I will be taking Ibrutinib for 4 months then keep taking Ibrutinib and dose escalate on the VEN for 5 weeks. I'm pretty sure I'll be taking both on this trial indefinitely but not totally sure. I live in Kansas so I will be doing a lot of traveling to MDA for 2 years. I'm still waiting on my insurance company to see what they will cover on the Ibrutinib the VEN is free. I also found it interesting that in this trial they will not cover my travel, hotel, rental car, scans, Biopsy, lab or any other medical stuff only the the VEN. Is this how trials usually work? I will try and keep this updated on my progress. Dr Keating said this is a very promising trial and that he's hoping it will last long enough for me to die of old age. Which would be great since I'm only 35.
Starting Ibrutinib plus Venetoclax Trial at MDA - CLL Support
Awesome news! Hope your platelets rebound soon! Especially like the comment from Dr. Keating! You are in great hands. Best of luck and kick cancer's ass!
Wishing you the very best Luke and hope you can sort the financial issues.
Thanks Newdawn. I'm sure we will figure it out. I actually feel pretty lucky to be in this trial so the financial thing is not too worrisome right now at least.
The American Cancer Society helps with lodging for cancer treatment. Not sure about their assistance with other expenses but may be worth giving them a call. Wishing you all the best.
I'm so glad for you and have hopes for great outcomes. I look forward to hearing about your progress. Thirty five is so young! One of my first thoughts after diagnosis was. "at least my kids are grown and much of my life has been lived." My best thoughts are with you.
I've enrolled in a trial and only the trial meds and trial specific tests are covered. Everything else goes through insurance. Travel and lodging costs aren't covered by anyone. I'm fortunate to have a supplemental cancer policy through work that pays me directly for some things like travel. It doesn't cover it, but it helps.
I'm eager to hear other's experience as I know each trial is different.
Best wishes Luke. Please let us know how you get on.
Sending best wishes and healing vibes your way! Stay positive. All the best!
I am in a similar trial in Nashville (link below). It is my understanding my trial pays for anything not covered by insurance. Hope you get things worked with your insurance company. Best of luck.......
Good luck to you as well! I have a good feeling this combination might be the beginning of something really really big!!
I wish you luck. I go to MD. I'm lucky I live in Houston so the drive is not that bad. My Oncologist said I would probably start Ibrutinib when it's time for me to start treatment. Most likely within the next 2 years. I just turned 48 so like you I feel like one of the young guys in the group. 😎
Best wishes to you! Please keep us updated. As a young CLL patient I'm always eager to hear about these trials. I hope everything gets sorted out for you!
good to hear Luke, you hit the jackpot when it comes to trials. I've read a lot about this one and it does sound very promising.... a one-two punch to CLL. I'll be watching. I feel I'm also a young CLL'er at 50 with young kids at home and running a business like you, so with that we're in similar boats. I'm confident these kind of trials will lead the way to a cure, so thank you for doing it and sharing, please do keep us posted. All the best to you , I hope your business and family are all doing well. great news on getting in this trial, cheers!
Congratulations on the trial. I am jealous as you are getting the cutting edge and most promising CLL treatment to-date. You have a great doctor.
I am in the phase 1 trial for ACP-196 at MDA. I get the drug for no charge but my insurance and I pay for all the tests including the CT scans. I pay the deductible which I reach in the first visit of the year. When I started the trial I was under the mistaken belief that the drug company would cover non drug costs. The drug company is supposed to pay for certain lodging, transportation and meal costs but I have yet to receive anything after two years. My guess is that the problem is on the MDA side. I cannot complain as the drug has been a life changer for me.
There are two airports in Houston. You want to fly into Hobby which is twenty minutes from MDA. It is a small downtown airport so you get in and out quickly. Bush Intercontinental is easily an hour or more drive depending on traffic and is difficult to get in and out of. SWA flys in and out of Hobby. You can get away without a rental car as Lightrail connects the Medical Center with downtown where there are lots of hotels. There are also many hotels in the Medical Center. You will also save a small fortune on parking.
Summers are miserable - hot and humid. Most buildings in downtown are connected by tunnel or skybridge so you do not have to walk outside. If you are in Houston in late February or early March, make sure you go to the rodeo - a short ride on Lightrail. Also avail yourself of the free Miller Theatre concerts in Hermann Park which is located next to the Medical Center. They put on marvelous performances. You can see their schedule on the internet. For example, in October or November I saw Tommy Tune perform. There is also a public golf course located in the park. If you are into baseball, you can take Lightrail to the stadium located downtown. The museums are located north of the park - a pleasant walk from MDA.
Great news Luke Jensen. Sounds very promising treatment, no side effects? Long may it continue for you.
Great news Luke! This sounds like a very promising combination.
Wishing you every success with the trial Luke .
I wish you well Luke (wont wish good luck as I hope the science comes thru for you). Keep us posted on how your journey goes.
All the best, rob
Check for a Ronald McDonald house for lodging. Heard about this trial -VERY exciting.
Sounds a very promising trial - look forward to hearing how you get on.Hope it all goes well for you.
The MD Anderson website has information about lower cost travel and accommodations. That said, you probably need to plan ahead. Discounts were not available for my spontaneous visit.
I am on the same trial at UCSD in San Diego. You should do well. I started 2 weeks ago and so far so good. Do you know your CLL Cell Genetics are? 11Q, 13Q? I am 17P ( the worst) but I am hoping together the 2 drugs will wipe it out. My platelets are OK but my Nodes were getting very big and my WBC was about 90 and moving fast. My nodes have gone way down in 2 weeks on Imbruvica. Venetoclax starts in 2.5 Months and then they run together for 1 year. Then they look how you have done and then have a protacal.
You should also look at Brian Koffman's blog / story. He is a great guy and runs CLL Society. He had a similar situation to you with the platelets but worst.
Tell me if you have any questions,
lukejensen27 Brian Koffman's blog / story can be found here: bkoffman.blogspot.com - Admin
I feel pretty lucky to be able to take part in this trial. I'm Trisomy 12 and Unmutated CD38- ZAP 70+. I hoping this trial will get rid or our CLL for a very long time. I will start my first dose of Ibrutinib tomorrow. Have you had any side effects as of yet! Best of luck Hoffy!
So far ok. A bit of fatigue and knee pain but it has gone away. Exercise seems to help.
Btw Brian K is and was on the original trial for Ibruvica.
Hopefully we both get to MRD negative !!
My husband has Trisomy 12 and unmutated CD38 Zap 70+ also. He has been on Ibrutinib for 16 months with great results. It has given him his life back. As of right now his counts are almost normal with minimal disease. The drug does cause him lots of cramps in many odd places. This is his third therapy since 2013.
I wish you well!
Good Luck...you will do great!!!
Thanks for all the encouragement everyone. I took my first dose of Ibrutinib last Friday. So far so good. Only side effect I have noticed is a little dry mouth. Still trying to wrap my head around being in treatment. I just really hope this puts me into a very long remission. Kinda scared about what the future will bring but I'll just take it one day at a time.
Please keep us posted! Husband has more nodes popping up every day and this trial would be our pick. Wish we could get acala/venet but beggers can't be choosers right? Wishing you the best of luck!
Luke - go visit panfoundation.org. The Patient Access Network helps under insured patients pay for their medications. You can also speak with someone via phone - they're very helpful. On my first trial (Idelalisib/Rituxan), everything was covered by the trial sponsor - Gilead Sciences. On my current trial, TG Therapeutics does not pay for the Ibrutinib (Imbruvica). I qualified under the PAN guidelines for any out-of-pocket payments that are not covered by my Medicare Rx Plan. All the best in your treatment. There are a lot of positive things happening in the treatment of CLL!!!
Luke... You have age on your side and a fabulous medical staff & center. Go with great optimism and all of our good wishes.
I am in a similar trial but with obinutuzumab added to the ibrutinib/venetoclax. I travel to Columbus from Philly and nothing is covered except obin and venetoclax. I am also young (but 47, not as young as you) and 17p deleted and so this was in my opinion the best shot at getting the runway I need to have a normal lifespan. There are very limited slots in these trials, and they have more patients that want in than they need so that's why they don't have to cover other expenses. I have noticed that my insurance is paying, but I haven't had any bills for awhile and I have a large deductible, so maybe you will find yourself in the same situation. I highly recommend using frequent flyer miles. You might be able to get people to donate them to you. I have managed to book most of my flights with them, and I stay in a bare bones hotel with a discount for patients to economize. Good luck. Keep us posted.
Just got my weekly blood results back after being on Ibrutinib for 12 days. The numbers pre Ibrutinib were WBC - 48.6, ALC - 32.9, Platelets 28. Todays numbers are WBC - 9.8, ALC - 5.6, Platelets 98. Crazy I thought my WBC would go up before going down like I have read about. I guess Dr Keating was right when he told me that Trisomy 12 is the only one were the WBC will go down instead of up. Other than having a mild rash and a little stiffness I actually feel better. I have a little bit more energy than before which is awesome!
I'm on this trial in Australia. We must have started at about the same time. I've been taking Ibrutinib for about 5 weeks and my ALC has gone from around 120K to just over 200K. I feel a bit tired but can't say I've had any side effects. My nodes went down in about a week.
The trial is about 800km from where I live so I fly in each month and stay overnight. I was more than happy to pay these costs but apparently part of the ethics approval for trials in Australia is that participants shouldn't be denied based on financial reasons, so they cover my flights, hotel and all scans etc. I've found the level of care excellent; for example, I had PK testing last week to see how quickly and well Ibrutinib is absorbed by my body. This meant 7 blood tests over the day. I expected just to hang around the waiting area but they gave me a private room and allocated a nurse (I was her only patient) to ensure the tests were done on time and walked straight to the lab. They also have a trial coordinator who takes me to any tests and appointments to make sure everything goes smoothly. The principal investigator, Dr Tam, is available on his mobile 24/7 if I need to call with any issues (haven't tried this out yet and don't want to need to though
So far, this is just like taking vitamins for me. I'm 51, fairly fit and have no other issues and I think this helps.
I'm a "normal" FISH, unmutated and no NOTCH1 or 26 other nasty mutations/deletions, and no prior treatment. FCR wasn't looking good (due to unmutated) and so this trial is a great option. Later in the year, they expect to be offering a lot more places so long as us 12 in the "safety cohort" do OK.
I've been hanging around the CLL Forum but will check in here too to see how you're going. I'm pretty confident we'll do well.
Hey Closh! Thanks for reaching out to me. I have been on Ibrutinib for 3 1/2 weeks now and other than a slightly painful rash and a little joint pain it's been ok. I go back to MDA in two days so I'll see what they say about the rash. I've been just taking Benadryl at night and applying Hydrocortisone twice a day but it doesn't really seem to help.
It's good to see that you get your Fights, Hotels and Scans covered. Looks like you are in good hands. Keep me posted on your progress buddy!
Luke - I passed on this trial because of logistics (I live in ATL) despite the hard sell from MDA when I saw them in Nov. Like you, I was DX young...38...four years ago. I start ibrutinib straight up in a couple weeks. If you don't mind me asking...where is your rash?
It's mainly on my arms and legs with a few spots on my sides.
Thanks. I see. No rashes in those spots ever before?
Nope. It started about 4 days after taking Ibrutinib.
Got it. I've been following your posts a bit. What triggered treatment...the Platelet drop? You aren't 17p right?
It was my platelets dropping to 28. I'm Trisomy 12, Unmutated, CD38 Neg, Zap 70 Pos. No other bad markers like Notch 1.
I'm on Clarity Trial in UK. Today was day 7 for me so you're a way ahead of me. I have a bit easier journey than you guys, 27 miles from my house to hospital.
That's nice! Wish I was only a few miles away from MDA. Hope you get great results on your trial!
That's fantastic news that you are on this trial. My mother (67) who has CLL, 17p deletion, saw Dr Tam who got her on to ibrutinib 30 months ago, it's a fantastic drug and he is a wonderful Dr. She was very unwell and we flew from Perth to Melbourne to get her onto it; it saved her life. She's now looking at starting venetoclax as her counts are increasing slightly, but this time in Perth. I had not heard of taking the ibrutinib in combination with venetoclax until I read a few post this evening, I'm really interested in this. I wish you the best of luck and am keen to follow your progress on here.
Venetoclax has been very successful on its own (although it's still early days) but pre-clinical experiments suggested that ibrutinib increases the susceptibility of our lymphocytes to Venetoclax. I guess we'll know soon.
I hope your mum does well. We're all glad that these new drugs are around but it's especially good for the 17P people.
I've had a few comments from doctors surprised that I'd fly from Adelaide to Melbourne for treatment. I don't get it - a bit of travelling is nothing when the issue is so important. The advice from my local Dr was to have FCR and that was without knowing mutational status. I said I'd prefer a referral to Dr Tam for a second opinion.
I start Ibrutinib in about two weeks. I am trisomy 12, neg zap. CD38neg and mutated they think. Blood work normal but nodes popping up all over. Neck nodes noticeable and tender and lots of pressure when I turn my neck. Any nodes noticeable? When do you take Ibrut. in the morning? with or without food? Is insurance covering Ibrut or still working on that?
I looked into FCR. Lots of discussions between Ibrut or FCR with my Dr. Finally decided Ibrut because of my job. Chemo like FCR had a different effect on my career. I am a pilot and Ibrut was viewed differently than FCR as far as getting my Airmen medical certificate. And a few other issues with FCR and bone marrow damage.
Good luck and best wishes. PLEASE keep us updated. My husband, maybe, be will be in the same trial soon.
Best of luck with the rest of your trial! Fantastic news it's going well for you 😊
Little worried. When I started my treatment with Ibrutinib my platelets were at 28. After a week on Ibrutinib they went up to 98 then after a month to 68 and I just got my blood work back and now they are now at 33. I really don't know what to think. I'm a little scared, just waiting to hear back from Keatings office. 😥
I just got a call back from MDA and they want me to stop taking the Ibrutinib and get my blood retested on Monday to see where things are at and if I can continue the Ibrutinib it would be at a reduced dose.
Kindest regards and very best wishes to you and your family from across the pond Luke ! Hope you find all the assistance you need to make your 'Journey' and your journeys ! ... As stress free as can be ! 🙋🏻
just want to check in and see how you are doing
I am a patient of Dr. Keating and offered the same trial.
45 years old, unmutated, normal FISH
white count over 100, lymph nodes growing and causing neck pain
for the first time spleen was enlarged
travel is also an issue for me - how much time do they require in TX?
hope you are doing well.
really appreciate the info
I hope Dr. Keating has come to some conclusion about your labs. I am a patient at MDA and have very similar markers, started ibrutinib in Oct 2016.
Have you checked with the leukemia and lymphoma society to help with expenses? They can assist with treatment costs, insurance premiums, but not labs, routine visits, or travel. It might be of some help to you.
Wishing you the best.
I haven't been on here for a while. My last post was about my platelets dropping, well I went off Ibrutinib for about two weeks because my platelets dropped to 16, in that timespan they put me on 40Mg of prednisone which put my platelets up to around 30 then prescribed me a Med for ITP called Promacta which has worked very well my last CBC had my platelets up to 326. So as of right now I'm back on the Ibrutinib, dosing off the prednisone and still taking the promacta. I will go back to MDA next week for my monthly visit. Don't know how much I'll be checking back in on here but I'm set to start Venetoclax at the end of May. Hope things are good with everyone.
This is how trials work. You need your insurance to cover much of the costs. I would want to be sure your don't have ITP with your rapid drop in platelets. A bone marrow biopsy might help with that diagnosis. What a drag to be diagnosed so young but the future is bright. MDACC is great, and so are OSU and NIH and others that might be much closer. Excellent combination of drugs. We just posted on that combo and others on our website. See: cllsociety.org/2017/06/ash-... Stay strong. We are all in this together, Brian
I don't know if I have ITP or not. Dr Keating said it didn't show up in the BMB. I've been taking Promacta every other day and my Platelets hover around 280. They said I will be tapered off of the Promacta soon to see if the Platelets stay up. Keating said that once I am in remission he thinks the Platelets will be ok. I will be moving down to Houston starting Monday for 5 weeks and will start Venetoclax on Tuesday or Wednesday. Thanks for keeping all of us informed on the new advancements coming through the pipeline in CLL.
Probably no ITP if the marrow showed decreased platelet precursors.I think MKs plan makes good sense. My ITP disappeared when ibrutinib got me into remission. Thanks for your kind words. Stay strong, Brian
Luke, thanks for sharing your journey on the Ibrutinib / Venetoclax trial at MD Anderson. I am enrolled in the same trial and begin the second drug, Venetoclax, in mid July. I hope you are doing well starting Venetoclax this week.
I was first diagnosed with Stage -0- CLL / SLL (unmutated IGVH) at age 49 in 2010, and was the 4th patient in the US to be treated with Arzerra in a Phase 1 clinical trial at MD Anderson in 2011. Arzerra held the CLL in check for 5 years, but the disease began to progress in 2016 with swollen lymph nodes, major fatigue and falling platelet and neutrophil counts. At Stage IV, I began the first drug in the trial, Ibrutinib, in January 2017 .
I have done pretty well on Ibrutinib for 5 months with a rapid reduction in lymph node size, and an improvement in neutrophils and fatigue , and platelets have steadied around the 105,000 range. The only major side effects are some fatigue and nausea, dry skin and mouth, bruising and bleeding even with minor cuts.
I'm hopeful, but apprehensive, about starting the Venetoclax in mid July due to the extensive no of CT scans, being in Houston away from home and family for most of the first 5 weeks during the dose ramp up, and of course the possibility of infections and other side effects.
I hope for the very best for you, and please keep us up to date on how you are doing.
Did your insurance cover Ibrutinib?
My husband is on Medicare.
Thank you, farrpottery
How's it going on the trial? I just started the same trial today.
It’s going pretty good. My numbers look great but I’m having some really bad fatigue with the Ven. My Doc lowered the dose from 400mg to 200mg. Also still having a lot of joint pain from the Ibrutinib. My Bone Marrow went from 89% packed with CLL to 1% hoping I can get to MRD-. Good luck with the trial!
Glad to find you here and glad you are doing well on trial. Like you my cll is in my marrow and is affecting platelets. Last cbc shows 55k platelets and I'll be starting ibrutinib soon. My doctor says ibrutinib does have a beneficial effect against platelet destruction. It's good Promacta worked for you and allowed you to stay on ibrutinib
Were you able to get off Promacta? What is your platelet count now? All the best to you
I am so happy you are doing well on the Ibrutinib/Ven. Combo. I just went to MD Anderson this week for a check up. My absolute lymphocyte count increased, but I am still in watch and wait (Unmutated). Thanks for sharing your experience with your the trial. It gives me hope. Dale.
Wishing you the best!
Just said a prayer for you so the good Lord makes your treatment completely successful!
Didn’t realize I haven’t posted in this For a while. I’ve been on trial for about 14 months now. I’ve had bad fatigue on Venetoclax and my dose was lowered to 200mg which didn’t really help. I started out with 89% CLL in my Bone Marrow to .77% (less than a percent) according to my BMB a couple weeks ago. Other than the really bad fatigue, CT and BMB every three months it hasn’t been too bad. I sure hope I will get to MRD- but who knows. Honesty though I’m not sure if this trial would be worth it if it doesn’t get me to MRD- all the expensive traveling, CT scans and BMB have really taken a toll. I’m sure if I just used Ibrutinib alone I could have similar results. Sometimes I think I made the wrong choice.
Hey Luke, I’ve just started the same trial and I kind of understand how you might be feeling about all of the travel and those scans and biopsies. Believe me I am not looking forward to what’s coming my way in that regard, but please try and keep the faith and do all you can to keep positive. Before I started treatment I was so bloody tired all the time and could not make it up the stairs without stopping to take a breath. I’ve always been known for my physical and mental strength so if you are anything like me this fatigue is throwing you for a loop. I hope that you attain MRD negativity, that the fatigue subsides and that you feel more like yourself soon. Deep remissions on ibrutinib are pretty uncommon so you made the right choice, never doubt yourself. You will persevere, we’ve all got your back! Hoping that this is just a blip and that at the end of your trial you are feeling great.
Wishing you all the best,
Sorry to hear you've had a hard time on this. I take it you'll drop the Venetoclax after (or if) you get to MRD-? You're not that far off. That may turn things around for you.
I can see how you'd have doubts about your decision but you made it based on the best available info at the time and if I was you, I'd still think it was the right option. There's doubts that Ibrutinib alone will hold things off forever so a chance of cure, or just episodic treatment, with the combo, is worth it.
Hardships shrink in hindsight - hang in there.
Hang in there. They don’t get much better than Dr Keating.
I’m rooting for you and MRD-
Hi Luke - How are you doing now? I'm starting a trial next week with Acala, Ven, and Obi. But your last post makes me wonder about the whole thing. Are you feeling better?
Just got some of my results in from my 3 month trial visit to MDA last week. All my blood work looks great. I’ve now been in the Imbruvica and Venetoclax trial for 16 months. I started Imbruvica at 3 pills then my Platelets dropped to around 15 held off the meds for a week then went to a 2 pills dose and it worked very well. My BMB at the start had 89% cancer then three months later on just the 2 pills I was at 8%. That’s before starting the Ventoclax I’m now on 1 pill of Imbruvica (Dr Keating just lowered it last week because of bad recurring joint pain) 2 pills of Venetoclax and my BMB last week showed .2% cancer left I have about 8 months left on the trial and still hoping to get to MRD- which is the goal and the reason for me wanting to get into it. Hope everyone is doing well!
My husband is in this trial he has been on the ibrutinib and will start the venetoclax in Aug. He is 59 he found out 3 years ago he has cll. I hope this combo works I hear good things about this trial. Wishing you the best.
Hi Luke Jensen, I hope you are doing well. Any news?
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