We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands work and he’s prefer to go the simpler route.
We learned he’s still 13Q and TP53 negative and his lymph nodes are reduced (we have used ALT for this with great success!) and his spleen only slightly enlarged from 13.7 to 15.8, with nothing concerning from BMB or CT.
My husband had a traumatic amputation of an inch of his thumb last weekend, so we’re in holding pattern right now. I’m very thankful we had not started anything as of yet.
We don’t feel a good connection with the “top” CLL specialist and vacillating on going with the hematologist/oncologist we also spoke with.
He was super humble/transparent and clearly stated the other guy was a big deal, said he felt he could manage my husbands case, and stated, “ he worked for us”, which isn’t always the mindset in that field.
Though I know the specialist is ‘specialized’, it’s tough when you don’t feel a good connection. He stated we had to trust him, but we don’t know him and trust is earned (in my opinion).
Has anyone else experienced this challenge? Any insight to share?
Thanks so much for amazing support provided on this site!
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Cb1391
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Any treatment comes with its own issues to watch for, so simple has not been my experience. I started Zanubrutinib full dose & was in the ER with Chestpain 13 days later. I know now that I have mild underlying cardiac issues, longterm pulmonary issues & still trying to workout at even 75% of my previous level was not wise. In the ER, in front of my local Onc & even at my longterm Pulmonologist, none of them addressed the ‘Bibasilar Subsegmental Dependent Aetelasis’ picked up on the CT Scan. 48hrs later I was back to the ER now by Ambulance with the diagnosis of Left Pleural Effusion, Pneumonia vs Aetelasis. It was a dark 3 months because I was admitted to the ER for a 3rd time in the 3 month on 1/2 dose of Acalabrutinib. I was able to heal on 1/4 dose of Zanubrutinib - 80mg daily for the next 3 months. My labs got better & better but I felt the abdominal lymph nodes growing.
I got to my CLL Specialist, she is affiliated my local Onc, I told her everything that went down & she said that she would of proceeded the same as they did. She had her own team of Cardiologist & Pulmonologist check me out. After PFT with 6 min Walk Test & 3rd Echocardiogram they said everything was good.
I increased the dose to 160mg daily & 1 week later Flu symptoms & Pleurisy Pain. I got antibiotics early this time but I had to fight for them. My platelets dropped & increased joint/bone pain occured. My labs improved but the CLL Specialist was pushing for IVIG, stating its 3 infections in 6 months.
I seen her last week & brought all my documents of platelets dropping & xray of my hip showing worsening of arthritis. Only because many doctors don’t seem to hear what I say. I brought it to prove that I suffer all the known side effects & I am not just complaining to be complaining. I told her that I have been on Antibiotics & Steroids since 1.5yrs old for my Asthma & thats what I trust. IVIG requires multiple donors & I just don’t trust it plus my SDA health message doesn’t even believe in eating meat so definitely not using blood unless absolutely necessary.
I get a cold 2 times per year on average before treatment if at all, I stay masked & live alone. I believe heavily in taking precautions but using a bazooka to kill a roach doesn’t make sense to me. Anyway, she heard me & we agreed to start counting infections in January, since from May to August episode, none of the physicians ordered antibiotics even though Zanubrutinib medication insert says to treat infection promptly, properly & even prophylactically 🤷🏽♀️
I say all that to say, I love Zanubritinib because in my opinion its strong, easily tolerated with the least off target side effects but its not candy. It removed in 3 days the large lymph nodes growing in my neck for 10yrs. I was in W&W for 13yrs 8mos & I need time to digest any new plans especially after my horrible initiation. GOD is who I trust & HE has saved me too many times to count. So local Onc or CLL Specialist, I say both & that is what I use now. Oral or Infusion, start low with oral & see how he tolerates it. Follow your gut because one thing that can not be taught is common sense. #GODSPEED 🙏🏾
Good morning! I have both a local hematologist (great doctor) and a CLL specialist. I sometimes hear slightly different things from both. I do my research and then make the best decision for myself. It’s ok to put a team in place. In addition add a dermatologist for skin checks. We are prone to secondary cancers such a skin cancer. I currently have more skin cancer and I have been referred through my dermatologist to a specialist for that. I am in the US so I am grateful that my insurance will cover everything. Hope this helps! Good luck with things. 🥰
Cb1391, Philippians 4:13- my strength is from Him. My hematologist and GP and gastroenterologist are my team. I'm 74 yrs, in W&W only 4 years, but can feel the changes in my body and reflected in my blood labs. You are right to trust your "gut" in making decisions. Without what I feel inside of me (Phil 4:13), I would be a "basket case". I talk with and listen to my doctors with a sincere ear and respect, but I always go to Him before I make a choice. 🙂 Sandra
I completely understand. Do they agree on the treatment options? If yes, you have done your due diligence in obtaining an "expert" review of the case and can move forward with the treatment with either doctor. Many times the expert will work together with a "local" hematologist/oncologist on some level. It is really important to have that connection of trust. I ended up traveling for treatment to be under the care of an expert (Dr. Flinn in Nashville, TN) after the expert provided what I felt was the best treatment recommendation for me (V&O). The local hematologist recommended acalabrutinib but I wanted a time limited treatment option if possible. The local doctor has continued to play a part in my care with blood draw orders, communication with Dr. Flinn and an offer for me to see him whenever needed (though, tough to get on his schedule).
I will finish V & O in January and have had an excellent response. I pray for a durable remission. Treatment was quite intense for a few months, but I had a lot of large nodes and was very symptomatic prior to treatment. The care I received with Dr. Flinn during that time could NOT have been matched locally. His office is set up to manage immunotherapy/chemotherapy treatments, and any complications that arise, where the local doctor is part of a large academic center and I would have not had the same focused care that I received through Dr. Flinn's office. I feel like I made the right decision for me. I'm grateful.
You really have to do your homework and be your own advocate for most things in the heath care arena these days. I would encourage you to pray about it - and listen for an answer. Peace will be your guide. Also know that you could be managed by the "local" doctor and can utilize the expert intermittently as needed for guidance. Let both the doctors know that is what you would like to pursue though, so there is no question as to who is managing your husband's care. All the best to you both!!
maybe you should consider doing Venetoclax by itself. That's what I did and I've been on it for a year now and will be on it for one more year. My doctor wanted me to do O and V but I told him I would just do the V, and he agreed. The Venetoclax alone had me in normal ranges of labs in 2 months, I don't really understand why I need to take it for another year but I think it's just their protocol.
Narl, the reason for the longer time on venetoclax, is that the longer you are on it, the less CLL cells survive, (per undetectable Minimal Residual Disease - uMRD), which has been found to correlate with a longer remissions.That's also partly why obinutuzumab is added; you typically achieve a deeper response and faster. Adding another drug also lessens the risk of your CLL becoming resistant to venetoclax. It's difficult for CLL to become resistant to both drugs during treatment. The downside is a higher likelihood of side effects and adverse events. Obinutuzumab in particular, pretty well prevents your body from producing antibodies from infections and vaccinations for typically at least a year after your last infusion. Still, you do gain the advantage of having a better chance of being able to repeat V+O, so your CLL is less likely to outpace new drug approvals.
Obinutuzumab de-bulking reduces the risk of TLS. (Worked on the blood lymphs for me, in first week my bloods were normal but didn't reduce the worst lymph glands by week 3, so I was still high risk TLS.)
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Hip Replacement while on treatment??
Update
Ultra V - Cycle 4 
O&V treatment
Husband's 3rd week of "O" infusions, getting ready for the "V" ramp up!
