Parking lot 10, elevator B, floor 8 - venetoclax edition

[cajunjeff]

Some people on here who treat at MD Anderson (MDA) or have read my previous reports of my visits there will recognize the 8th floor as the leukemia ward at MDA. You get there by parking in parking lot 10 and taking elevator B. MDA is so vast a complex that there are multiple thousand car garages and an alphabet soup of elevator banks. I am at MDA today being monitored for the second week of my venetoclax ramp up.

The gates to enter parking lot ten are guarded by evil kiosks. I get intimated when I go in because there is like this decision tree on the kiosk - pay here or pay when you leave. Do I swipe the card and take it out quickly or insert in and leave it in? Which way does the card go in? All of these decisions must be made as cars stream in behind me, cars likely driven by the kiosk experts who work at MDA and sail through the gate.

Having been to MDA way more than I wanted to be this year, I had mastered my kiosk skills. I push for a ticket, bring it with me, and pay when I leave at the kiosk in the building where I don’t feel the pressure of cars mounting behind me. So I was not expecting any kiosk trauma/drama today. Wrong.

I arrived around ten, kiosk rush hour, and had two kiosk lanes to pick from each with one car in front at the kiosk. I picked the left lane, knowing the right lane would probably move faster, because my life is such I always pick the slow lane. It was no matter today, there was just one car in each lane so I expected no delay. Wrong again.

By the time three cars had passed through the lane next to me, I realized the lady in front of me was probably frozen by kiosk anxiety. I wasn’t judging her, I am a poster boy for kiosk anxiety. I couldn’t switch lanes, two cars had filled in behind me. It took Henry hornblower behind me only about ten seconds to give her the horn.

As she reached out the window or her car to try to use the kiosk, I immediately recognized part of the problem. She had two foot arms and inexplicably had parked four feet from the kiosk. Why not pull closer if you know you have short arms? Why wouldn’t short arm lady get out of her car? She was half falling from her window flailing at the kiosk.. Henry horn blower gave her a second toot, like that would help. What a d#ck.

I finally dismounted my vehicle to go see if I could give short arm lady help. I resisted giving Henry horn blower the finger. It’s Houston, and even money Henry was packing. I didn’t want to be shot and killed in a parking lot rage situation. The lady was trying to push the help button, she could not have reached with a yardstick. Been there, done that. Help buttons on kiosks are the most useless things in the world. If anyone answers, they inevitably have a foreign accent made more unintelligible by a bad connection. I don’t even know if the kiosk help people reside in the same country as the kiosk in play. I quickly got her a ticket and suggested she use the inside kiosk when leaving. Poor lady, if she’s at MD Anderson she probably had some version of cancer and doesn’t need is exacerbated by kiosk anxiety.

I headed up elevator B to do my labs. I hate getting needle stuck, I have to close my eyes. The girl who does my labs in my home town is always saying “whoops”, whining about my skinny veins and ending up excavating my arms. The girl at MD Anderson today said here comes a small pinch but I did not feel a thing and didn’t even know she was done. I made a big deal of how good she was and she responded with smiling eyes. Now on to my vitals. I had decided if my blood pressure was high I was going to blame it on the kiosk misadventure.

The labs I was doing are part of the venetoclax ramp up. Venetoclax is so powerful at killing cancer cells, it can create tumor lysis. Lysis just means to break down. With tumor lysis it’s breaking down cancer cells. Electrolysis is using electricity to break down. A few brave Cll pioneers died during early venetoclax clinical trials from tumor lysis. Venetoclax killed their cancer cells too efficiently, releasing chemicals that overwhelmed their kidneys. Thanks to these brave souls, venetoclax is now given in small increments with monitoring to prevent tumor lysis. Today starts my second week of venetoclax with my first increased dose. I am actually low risk for tumor lysis because I have been on ibrutinib/acalabrutinib for three years and my tumor burden is low, meaning there are less tumor cells to kill.

Acalabrutinib has been working great for me. Then why add venetoclax you might ask? To V or not to V, that’s what Hamlet said that might frames the question.

People who are in a war and fighting someone hand to hand for their lives know that the old saying “never kick a man when he is down” is dumb. He might get up and kill you. There is no better time to kick a man trying to kill you than when he is down and at his weakest.

That’s the simple explanation of why, in consult with my doctor, we decided to add V. Acalabrutinib has beat my leukemia down. But it’s still there, my tests confirm that. Now is the time to kick it. Kick it before it strengthens and end runs my acalabrutinib

My doctor is fully on board with adding V. It’s a risk, to be sure. There is added toxicity with V. There is also the risk I am using my back up drug too soon and there aren’t that many options after V and acalabrutinib.

There are risks in not going after my leukemia while it’s down. Who knows what the long term side effects of acalabrutinib are? The plan is that if I am mrd negative in a year for me to stop both drugs. Hallafreakinglula I’m tired of taking Cll meds.

And the there is the C word, cure. About 20% or so of the people who took FCR therapy have not progressed with their Cll in over 20 years now. That’s a cure in my book. The best predictor of long term remission with FCR is mrd status. For those unfamiliar with mrd, it means minimum residual disease. When you are mrd negative, it means with the tests available today, no leukemia cells can be found.

In trials combining venetoclax and acalabrutinib or ibrutinib, people have been reaching mrd negativity at much higher rates and faster than with FCR (chemotherapy). The working theory is that getting mrd negative on V plus I will be a predictor for long term remission as well. The hope is that a healthy percentage people in remission now from V plus I therapy will never progress. We will know better in twenty years.

I can’t wait 20 years to find out, heck, that’s beyond my life expectancy even without Cll So I decided to go for it.

I just had lunch and am awaiting results of my ramp up lbs I was crushed to learn chick-fil-a in the MDA cafeteria is closed for repairs I was going to get pizza instead, but it looked like lady shortarms was in that line and I wasnt doing that tango again. I went for the Asian food, a big mistake. The chicken hot bowl I got consisted of a large wad of white rice, one broccoli spear, cauliflower (yuck) and some piece of chicken I could not decipher. I couldn’t tell if it was white or dark meat, I couldn’t even tell what part of the chicken it was. I tossed it and had a bowl of veggie soup and some spaghetti at the Rotary house. Spaghetti and meatballs is very hard to screw up.

I have two more weeks of my ramp up. Next week I will use a local lab for my bloods and email to my doc. Once the ramp up is done I will see him once a month for three months and then quarterly.

I think my fist mrd testing will be done at month 3. If I do get mrd negative by six months, I’ll still finish out the year on both drugs

It’s good I wrote my post this week and not last. I didn’t think much about adding venetoclax until I opened my first box, alone in a Houston hotel last week. The box is quite intimidating and provoked some why me, why do I have cancer, feeling sorry for myself thoughts. I was so happy to leave Houston and go home to my family and pups. The thought crossed my mind of not coming back to Houston .

My head is screwed on a bit better this week. It’s not a one round fight. I feel like my Cll negative thoughts won the first round, Pardon the boxing metaphor, but I am up off the mat ready for round 2. Acalabrutinib and venetoclax are both inhibitor drugs, meaning they act on the inside of Cll cells to kill them. But they use a different mechanism of action , acalabrutinib working better on Cll cells in the nodes, venetoclax working on Cll cells in the blood, leaving those little suckers no place to hide.

I’ll have more labs tomorrow early and then drive home. Cll sucks, but here I am with a great chance for a long remission or cure using two oral pills only. It could be way, way worse.

I hope short arm lady gets out today okay. Wish me luck with navigating my Cll and the kiosk. Not to beat a dead horse, but parking lot kiosks shouldn’t have options. I just want to take a ticket when I drive in and pay a guy at a window when I leave. And don’t me started on automatic phone answering services that take me through a 20 minute menu before disconnecting just as a human on the other end is connected. Coincidence? I think not.

[Koda1234]

Love all of your posts and I just know you will get the results you’ve hoped for!! You got this cajunjeff!!

[Newdawn Administrator]

I could so personally identify with the short arms, kiosk anxiety issue Jeff. It’s sometimes a case of risking pulling so close as to compromise your wing mirrors or flap around trying to extend the arms beyond where they’ll go!

I’ve been through the Venetoclax ramp up and was probably only the second V patient they’d had in my unit. As a result hyper vigilance was order of the day and I seemed to spend days and nights hanging round the haematology day unit waiting for the 6 hour blood tests following meds and sometimes ending up on the ward when my electrolytes showed the slightest deviation. It’s a time I remember with little affection and much agitation and trauma to be honest especially as I have the worst veins possible for blood lets.

I’m glad all is going well for you but it’s a bit of an irritating hurdle even without having to navigate your parking horrors. I also thought of my V tablets as little warriors going to finish off the wounded cells and resistant stragglers. I used to say, ‘go get ‘em’ as I swallowed them. And so they did! Now I’m uMRD and have the last haematology consult of my trial tomorrow. All meds finish end of Feb and I’ll be so relieved. I suspect my gut biome will be too.

Wishing you a swift remission, easy parking and no cytopenias 😉

Regards,

Newdawn

[cajunjeff in reply to Newdawn]

That’s awesome Dawn. The million dollar question with these novel combinations is whether mrd negative remissions will lead to 20 year remissions like some with fcr get. I asked that exact question to Dr Keating when he was treating me and he thought the novel drug combinations will outperform fcr. It’s reasonable to think so since novel drug combinations seem to mrd negative status faster and deeper. Of course Dr Keating was a glass half full guy and was optimistic about most everything. I am sure people were drawn to him because of his positive energy, I know I was.

Insofar as short armers, I hope I didn’t come off as a short arm hater. I have many friends challenged with lower end arm length who lead perfectly normal lives.😜

[Newdawn Administrator in reply to cajunjeff]

Oh it hasn’t held me back Jeff. I could always throw a mean javelin! 😄

Yes Watch & Wait the sequel feels quite scary and I’m coming up to my 10th year since dx in a few months. At diagnosis, at that time, 10 yrs was considered the longest survival period that could be anticipated.

Thank goodness for the researchers and doctors who made these meds possible!

Newdawn

[Psmithuk in reply to Newdawn]

Glad I didn’t know that (10 years survival) when I was diagnosed back on the early years of this century! I didn’t think about CLL for years after diagnosis, thanks to a really sensible consultant.Cx

[Newdawn Administrator in reply to Psmithuk]

I’ve not concentrated on time scales either C and was never given projections by any Consultant but it was widely accepted at that time. Novel therapies changed that landscape of course and we can now gaze much, much further 😊

Newdawn

[HopeME]

Hi Jeff:

The good news is when you leave the hospital this afternoon you will be doing the driving, not riding shotgun, so there won’t be any trauma from that perspective 😁. We men love our wives but men aren’t supposed to ride shotgun, it’s simply too traumatic😁😁

All kidding aside, thank you for sharing your story. I constantly think about should I opt for single agent A as my second line treatment or A + V or A + V + O or some other combination. It isn’t easy and it doesn’t help when the brilliant doctors often ask for our opinion regarding which treatment combo to select. Huh? How am I supposed to know? I barely got through biology and I had to drop chemistry and switch to liberal arts when I was in college! And you’re asking my opinion?

Good Luck. I hope the V puts your CLL into deep remission or better yet cures the dam disease.

Best

Mark

[WarriorPrincess4]

CLL is not a funny topic and still I'm giggling through your post. Love it. I'm on Zanubrutinib and when I last questioned my doctor about adding Venetoclax he said No. Boohoo!

I'm sure you will achieve what you are hoping for. I'm rooting for you! 😊

[cajunjeff in reply to WarriorPrincess4]

My doctor had been telling me know for the last couple of years. I think it’s the interim success he saw in several ongoing ibrutinib plus venetoclax trials that swayed him.

I would ask him about venetoclax on most visits. When he added it, I wanted to make sure it wasn’t because I wanted it, but rather because he thought it was time.

In making my final decision my query to him was a simple one. If with all he knew about Cll treatment, if he was treating himself or his father, would he add venetoclax under all my circumstances. He did not hesitate and it helped knowing he was fully on board.

[may04cll in reply to cajunjeff]

did they keep you for observation for your ramp up and initial dose?

[cajunjeff in reply to may04cll]

I am in week 2 of ramp up. I stay in houston hotel for a few days each week while being monitored. The final two weeks of my ramp up will be done at home where I will do labs locally. I am low risk for tumor lysis, so there has been no need for me to spend any hospital time so far.

[WarriorPrincess4 in reply to cajunjeff]

My doctor told me that he would only add it if needed. I am doing great on Zanubrutinib except for the blip on my carotid en the high BP (on checkups only) but that is not caused by the BTK inhibitor. I am also participating in a trial, three years done and two to go. They added an extra arm to the trial, Zanubrutinib and Venetoclax and this is what got me asking if it was something for me. I have an other CT etc appointment at the end of the month I'll question him again about the success of adding V to Z

[johnliston]

Been there done that. Everything but the parking and the Asian food. I'm UMRD, but don't think it will last 20yrs. I go back in March for 1.5 yr after trial check up.

john

[BobbyFour]

Jeff, you are such an encouraging voice on here and I wish you the best for your treatment! Let’s hope this puts it away for a long time!

[Bluemerlegirl]

I am so new to everything here, that I cannot understand, or imagine, all of the treatments - the when, why and how. I read the posts of others as a way to help me understand what my future (near or far), may hold for me, and try my best to understand. I read your post like I was reading an excerpt from a book. It is easy to get lost in negative feelings (I lived in those feelings for the first few weeks), and I am finally coming to a place where I know I am not alone, and I am learning this is a fightable fight. Your post made me smile and laugh as I read it. Though she is no longer with us, my grandmother always told me that laughter is the best medicine, so thank you for the post, the update and the humor that you were able to tell it with! 🧡 And, if you ever write a book, I would totally read it!

[Shepherd777 in reply to Bluemerlegirl]

cajunjeff has numerous articles you would love. They are instructive and humorous. They carry titles like "CLL for dummies". Write him and ask him and he will surely connect you with several...they are so good. Had my wife not gotten CLL we would have never known cajunjeff and the laughter he has added to our lives.

[Flygirliowa in reply to Bluemerlegirl]

I love the humor too and would definitely read the book (if written).

[Hidden]

Nice write up Jeff! I wish you the fewest MDA parking adventures possible while on Venetoclax!

[Shepherd777]

Love your humor. My problem with paying the Kiosk inside is it ate my credit card once and a mechanic had to come out and get it back for me. Yes, the help phone actually worked that day. However, when the mechanic left, I realized I did not get a receipt or my ticket back, so I drove out to where they still had a ticket taker and told him what happened. He just waived me through.

Now I pay at the inside kiosk, but usually ask a fifth grader who is standing nearby helping his parents at the kiosk to help me. 😁

[cajunjeff in reply to Shepherd777]

That’s about right. I even had funny kiosk story when I left after posting my story.

As you leave MDA there are parking kiosks by the parking lot elevator banks. I paid mine and a couple walked up to the kiosk next to me. The husband was paying while his wife was distracted for some reason.

I walked to the elevator and she walked right by me. She was in my personal space bubble enough that I wondered if she thought I was her husband, but I did not give it much thought. I wasn’t 100 % sure they were a couple.

So I walked on the elevator and she followed me right in. She didn’t even pay attention as I hit my floor button.

I forget what she said at that point, but it was then clear she thought I was her husband. I answered her and I thought the poor lady was going to have a heart attack. Her husband must have really freaked out.

She was cool enough once she realized her mistake and that I wasn’t Jack the Ripper. We shared a laugh as I got off on floor eleven and sent her back to the third floor where the skywalk and kiosks are.

The whole kiosk thing is a riot. I do live in a small town and am no Einstein. But I travel a lot and can get my way around. I always think that if I am struggling with this technology, how are people who never travel figuring this out?

Everything at MD Anderson had a learning curve for me. Now it’s pretty much duck soup. I feel very fortunate to get the quality of care there that I do. I have a great comfort level with my doctor and the whole staff there. But it sure is an intimidating place on your first visit. I remember how freaked out I was walking in a sea of cancer patients and being one of them. Surreal is the word that comes to mind.

[J1015 in reply to cajunjeff]

I will never forget my first visit to MDA. I felt like I was going to throw up as I maneuvered through the in-processing. My blood pressure was stroke level and then I babbled like a crazy lady when I first met Dr. Wierda. Now I drive over to Houston the night before and stay at the Rotary House. I make my appointment the very first one of the day so I can leave my husband drinking coffee while I zip over the sky bridge for my labs. I have time to meet my husband for breakfast before my 8:00 appointment with Dr. W. But I have to admit, I will always think of you and laugh when I park in a garage where the kiosk spits out my ticket. Thank you for the laughs.

[jagger5]

Jeff wether you are simplifying CLL into terms that even the most uninformed can grasp or describing a clinic visits and all it’s small irritants that seem monumental to the stressed out patient and making us laugh your posts are always a pleasure to read.I will look forward to following this new chapter in your CLL journey and be wishing you years in the MRD comfort zone.

[DanBro1]

All the best to you, Cajunjeff, on your Venclexta journey. I have one month left on my 12 month Venclexta regimen (March 1st I'm done - hopefully). I believe that your regimen will be 24 months, since you were on a previous treatment program.

[Tpdnotts]

Such a funny post. Made me smile. Living in the UK, it seems so surreal that you guessed the chap in the car behind at the kiosk may have a gun. Sounds so Wild West!

[Annie1920 in reply to Tpdnotts]

Scary

[Teddo in reply to Tpdnotts]

But the gun-crazy U.S. is the Wild West. In Texas as in many other states one is permitted to carry a gun out in the open. I like the way you Brits treat guns better.

[Michaeljohn50]

Great post; it's OK to take CLL related drama personally, it most certainly is!

I had to drive about 90 minutes to the location of my O&V infusions and ramp ups. I started treatment during Covid travel restrictions armed with my patient card jand appointment letter just in case the police pulled me over. The upside was that traffic was virtually non-existent!

Parking was free, a small positive about treatment in a cancer ward. But I also had ticket machine anxiety and "is there a space" anxiety. On infusion days my world revolved around platelets; specifically there being enough to allow the infusion to proceed. Once ticketed, parked and ensconced in my infusion pod ,life got much better. Tea (the coffee was not good) and ginger nuts on demand provided by empathetic people all around.

The infusions meant that I had to take time out, read, email or have a snooze. Looking back the experience was doubly therapeutic, my CLL was eradicated (for now) and I nurtured my mental well being. I even enjoyed the drive.

Stay well and continue to get better.

Michael

[LeoPa]

You should write a book, the talent is certainly there! Perhaps it would not make much money but if you put it into a PDF and uploaded it on this site for free it could make you kind of immortal. Good luck with the V and become one of those umrd guys soon!

[Ernest2]

A great read as always, and well done for your food deeds.

Wishing you the best on Venetoclax.

Ernest

[PoisonDwarf]

Great news on the MRD front! I hope your MDA elevator & cafeteria challenges are soon a distant memory. Love your posts. As a member of the impossibly short armed brigade thank you for being the sort of gentleman that gets out and helps, instead of sitting on the horn. As they say, you really do have to hand it to short girls … thank you!

[ViPOR]

I got a kick out of reading your post. Thanks for sharing. I am a FNHL cancer patient who has had Venetoclax plus Ibrutinib, Prednisone, Obintuzimab, and Revlimid on the VIPOR trial at NIH. It was only 6 cycles (three weeks each cycle) but tons of GI issues. There is always high security at NIH (scanning trunk and drivers wheel of car for sign of explosives ) each time car went in to underground parking. But it was smooth sailing doing that, guards were fast and niceand the underground parking was free and easily available. Thanks for sharing. I hope you are doing well!

[thompsonellen]

Very much enjoyed reading your entertaining post. Hope you are well. I didn't get to MRD- on a combo trial but I would have done it all again. After all, it took VAMP - 4 drugs - to tackle childhood leukemia in the 60s. Seems like a combo is the best shot for permanent remission here, too. Be well.

[BeckyLUSA]

Great reading this AM Jeff! I needed the laugh and your writing is such that my mind’s eye felt like I was watching it on the big screen. Here’s hoping your body goes into complete remission, MRD n or u.

However, even if you do not get to that magic level, there is is still life after remaining MRD positive. After being on the Captivate trial, taking Ibrutinib and Venetoclax for 3 + years, I still did not make the 1st team. A little bit of CLL still showing in my bloods; however, no symptoms and all blood work is great. 140 mg of Ibrutinib and 2 acyclovir daily are keeping me this way for the past 2 years. Can’t complain. Just wanted our fellow sojourners to know there can still be a good quality of life even without being MRDn or MRDu. Sitting the bench is not always a bad thing. You still get an excellent view of the game of life.

Becky

[BobbyFour in reply to BeckyLUSA]

Thanks Becky!! As an SLLer who hasn’t gotten much W&W time, I am hoping the treatments give me a few more years!!

[CSP2019]

Thanks for your post, cajunjeff. I am just getting started, swimming in the dark, + I appreciate your thoughtful analysis.

[bulldozer4264]

We use elevator A. It's slower but gives wifey a chance to go potty (right past there) while we wait. Elevator A is more of local than an express

[Vizilo]

Love your comments. By the way, I’m too cheap to pay the $26.50 for parking at Sunnybrook in Toronto for my periodic visits to my wonderful cll specialist. So, I park about 1 km away in a residential neighbourhood. The 15 minute walk each way helps me calm down before my appointment and to collect my thoughts after.

[Psmithuk]

Loved it, Jeff! More please.Cx

[janvog]

Florida: As the county disabled van swings from the palm fringed highway into the curve towards the one-story cancer clinic sitting on the side of a guarded section of retiree homes hidden behind manicured gardens , I smile: "Back to my home away from home !" . The van stops under the canopy of an entrance which seems liks a medium-priced hotel. I enter the large lobby studded with separated uphostered seats, and check in - like in a hotel lobby. It is 12:35. At 1:00 a lab technician calls my name and I follow her towards the lab. But first she checks my weight, and then asks me the most terrible question one can be asked in a medical context : "Do you have a port ?" I whince and tell her "No!" But I am tempted to say: "Yes, SANTO DOMINGO!". I sit down in the room where other lab technicians are taking blood from other patients. I give my lab technician the list of my RX and supplements. Mercifully now-a-days the extraction is a minimal procedure as she fills seven, eight probes. Then she leads me into one of the fifty small rooms and fifteen minutes later my hematologist or his assistant walk in with the CBC results of the test taken 20 minutes earlier, plus CMP from a month' ago, plus A1C and TSH taken one month' ago - as a special favor to avoid that I have to go to a lab somewhere with orders from my primary physician. Now - my condition is under control with Imbruvica and FolivanPlus (an iron-vitamin supplement). Lucky all around - thus far, now. But stoically without illusions about tomorrow....

[beanlake14]

I just love your post and your humor. When I went to MDA, I saw Dr. Thompson, and just LOVED his Australian accent-good reason to go back. I stayed in a nearby hotel a few times and an airbnb the others, so I could walk and not have to navigate parking there which would not have been good for anyone. Right now, I just finished the trial with ublituximab, umbralisib, and venetoclax. I DID get tumor lysis and almost died, but it was because of the ublituximab. Since allopurinol was not a part of the trial, they didn't let me take it. ( I knew better and questioned this!) Anyway, after 7 days of hell in the hospital, I opted to stay in the trial. It will be 2 years next month. My blood is MRD negative, my bone marrow is not (close though), so I am staying on the umbralisib til it fails. I feel great, just have low immunity like everyone else. There are some great art museums in Houston that I loved and I also enjoyed just walking through campus at Rice University. I am a teacher, so I could pretend I was a professor there. Stay well and safe, and keep us smiling

[netspert]

Don't ever lose your sense of humor, or stop writing - it's good for your health, and ours!And you make me glad that my insurance wouldn't cover MDA - I go somewhere else where there aren't any kiosks.

[WinJ3]

You really should write a book Jeff😅

[Ghounds]

Thank you Jeff for another wonderfully written and entertaining account. I can visualise everything you say especially Hooting Henry packing his pistol! I really needed some light relief and a laugh this evening and you have delivered a real distraction.

Wishing you an easy ride with the V leading to a long lasting and healthy remission, you deserve a rest from drugs and also the kiosk challenge!

If you ever get round to writing a book I will definitely be buying it!

[Pin57]

Your posts always bust-me cajunjeff, awesome stories, well written … and hey, I learned a new word today from you …

Hallafreakinglula

Here, I am pleased to use it for my first time…

Hallafreakinglula you get to remission cajunjeff !

[nvrbeold62]

Great post Jeff. I thoroughly enjoyed reading it and learned a few things as well.

My trips to MDA have never involved self parking. I think now that has been a blessing.

[Davidcara]

Good Luck Jeff. Was nice reading your entry

[DGG1931]

Hey! I’ve been on Acalabrutinib for 2 years. Adding Venetoclax starting 2/1/22 at MDA. Dr. Thompson. Wishing us both the very best outcomes! Maybe I’ll see ya around sometime. Im from Alabama so I’ll be staying at the Rotary House from 2-3 weeks.

[Malkie56]

Thank you! I’m wiping my tears between hysterical laughing and emotional crying while reading your post. I’m about to start the journey that you are about to complete. Your posts give me the strength to face this even though I want so badly to be in denial and run away. I love the idea of having a goal. A goal of fighting hard to reach Mrd negative (thanks for the explanation) and be able to get off the meds altogether. I can’t bear to think otherwise. Your sense of humor lights my dark days! Thank you! I wish you all the luck in the world and will celebrate when you reach mrd real soon!

[kimiD]

Jeff,Your post is humorous yet reflective. I'm crying as I'm reading it because I am where you were last week. I go for local labs tomorrow to confirm whether my numbers are climbing due to acalabrutinib resistance or perhaps from a combination of being off meds for a week in order to have my colonoscopy, combined with my recent booster. We shall see. Either way, thank you for the invitation to your journey and I truly hope your ramp up is uneventful. Travel safe.

Kim

[Hidden]

Smiled at your post. Going to MD Anderson first week of March. Also on Acalabruitnib seating addition of Venetoclax at proper time in my treatment course. Yes being alone in Houston is a drag. My daughter is going with me this time.

[BobbyFour]

Jeff - wondering how things are going 2 months later?

[Malkie56]

Thanks for sharing your story. I’m about to add venetaclax to acalabrutinib (that Ive been on for three months) this week. Any side effects? You mentioned people used to die from tumor lysis because they went too fast. Now that they ramp up slowly - not a problem at all? No more deaths? As you can see I’m very anxious.

[cajunjeff in reply to Malkie56]

They have a protocol for starting venetoclax now that virtually eliminates the risk of tumor lysis. The risk for tumor lysis is greatest with this who have the most Cll burden, tumor burden as they call it. While they will still be very careful ramping up your venetoclax dose, the fact you have been on acalabrutinib three months has very likely reduced your tumor burden such as to make you lower risk for tumor lysis anyway.

Venetoclax has been harder for me than it is for most people. I have had stomach problems and issues with neutropenia. I think my problems are manageable in the long run and still think adding venetoclax is the right move. I think most people tolerate venetoclax a bit better than I do, so I think the odds are you will do very well on it with manageable side effects, if any. Good luck to you. I think you are making the right move.

[Malkie56]

Thanks so much for your response. I always enjoy reading your very informative and interesting posts. You always add much appreciated humor to the serious subject matter. As they say, laughter is the best medicine! I wish you the best of health.

[BallparkChaser]

Great post Jeff. I understand and share your thoughts on adding the Venetoclax. Stopping meds all together, even if just for a year or more, sounds real good to me. I am about 10 months into a two year I+V trial with Dr Thompson. The Ibrutinib had me down to 5% after almost three years and then 6 months into trial I was at 0.2% - so still a ways to go but headed in the right direction. MDA is an amazing place - each trip reminds me how lucky I am to be doing so well and I am always struck by how friendly the staff is throughout the building.

Tim

[GG1084GG]

Thanks so much for your post! We all need a good laugh through this CLL journey and you gave that in a big way to my husband (the patient) and to me (the support team)!! Much needed for both of us!

Thanks again!

[Phil4-13]

cajunjeff, you are the best!!!🙂 Sandra

[Skyshark]

uMRD4 is not lasting for Venetoclax treatments, even uMRD6 patients progress.

CLL14 for V+O 3 months after treatment ended had 76% at uMRD4 or better. 6 years after end of treatment (EOT) they are at 7.9%. The overall PFS has not reached median at 72 months. It's 53% and the study will run one more year to get the overall median. The uCLL patients have reached median, uCLL+TP32/del(17p) reached median at 47 months (38 months EOT).

CAPITVATE FD trial for V+I has very similar median 49 months (37 months EOT) for uCLL+TP32/del(17p), the other KM PFS curves appear equally similar except for mCLL+TP53wt which has a bit better PFS than V+O.

The key is that short duration means less risk of developing resistance and treatments are repeatable with a full range of CLL drugs still available. It's like a roller coaster. BTKi monotherapy until progression is one and done.