Happy Friday to all! I know I told everyone a few months ago that I'd be going to see Dr. Byrd at The Ohio State University in July. Well, the time is here. I go to see Dr. Byrd on Tuesday July 2nd. It will be my first time to see my CLL specialist. I do have a local hematologist who is also on my team. I am so excited and so nervous at the same time.
Wish me luck and I look forward to sharing what he says with you.
Sophie
Awesome! Looking forward to ur update!! Dr. Byrd is tops!!
That's great Sophia. I have never met Dr Byrd, but he certainly is a rock star in the CLL world and among the most knowledgeable physicians in the world about ibrutinib and the other novel agents.
Its a good idea for you to write down all the questions you have for him. I hope that among the questions you ask him, one of those questions will be that, based upon his knowledge of the progress all the many exciting cll combination trials going on now, what combination in his opinion provides the most promise?
If you can sneak in a question for me, it would be this. Does he think ibrutinib alone can be a forever drug for those who take it as their first treatment?
In a trial he is involved in at five years out, only a very few had progressed on ibrutinib. I think I saw some similar seven year data somewhere.
I am just curious if he thinks that most people who take ibrutinib frontline will never develop resistance to it. While I hope to get in remission and off all drugs one day, it would be exciting to know that ibrutinib has the potential of offering a lifetime of disease control. It appears that so few people who start ibrutinib as a first treatment progress on it at 5 or 7 years out, its reasonable at some point to ask if they think it can work indefinitely.
i Know Byrd is an ibrutinib guru, so any information you can share about his thoughts about how long he thinks it can work alone or what drugs work best with it would be great.
Here is one of the studies he is in that so far as I know is the longest running study of a small group of folks who started on ibrutinb alone.
bloodjournal.org/content/13...
Thank you for posting the link! It answers a lot of questions. It is bookmarked now for future reference. Most appreciated!
~ Yuck
CajunJeff, I will be happy to ask those questions of him. I hope my head won't be spinning when I leave there. I have my questions all written out. I've got my husband going as recorder. I'll be in touch later next week! Thanks for being in touch.
Cajunjeff, I saw my rockstar Dr. Byrd. He is awesome. So far he assessed me and drew a lot of blood. I got to go back in 8 weeks for him to tell me his conclusions on where I am in all this and what might be ahead for me. After that he will see me once per year and serve as my team leader.
He said he just sent off a 9 year study on treatment naive patients who started on Ibrutinib to the medical journals. Yes it is possible to stay on it forever. So not only a 5,7 year study but now a 9 year study. However there is a second generation of ibrutinib called Acalabrutinib that has just been sent for approval. He did the clinical studies for it. It has many less side effects and should be approved in 3 to 4 months. So it maybe that is the one that would be more suited for a lifetime.
He also said the most promising drug combination is venetoclax and Ibrutinib or the second generation of it acalabrutinib.
The most exciting thing I learned from him is the ibrutinib has made mutated vs unmutated agnostic. He said the prognosis is the same now for both groups once you start on Ibrutinib.
He also said this is a disease you live with not due from these days.
I am curious if folks in the USA have had problems getting insurance approvals for Inrutinib? It costs over 10,000 per month!
Great info Sophia, that very encouraging. I wonder, and still wonder, if I will be switched to acalabrutinib at some point. My doc might go with the if it ain’t broke don’t fix it approach. My side effects with Ibrutinib have not been too bad.
I just got on Medicare and I think pay about 13k a year for my deductibles and copays for Ibrutinib. There are a number of assistance programs to help with the copays fees, I just don’t qualify for them.
I meet with my doc next week for my regular visit and I am pretty sure to discuss adding venetoclax for me. I am not sure if Medicare will pay for both drugs. I’ll know soon enough.
It is helpful for me to know that Dr Byrd thinks some will never develop resistance to ibrutinib. I am curious in his study what the progression free survival percentage is at 9 years out. I think it was around 70 % for treatment naive patients at seven years.
Now that I'm reading some other posts it looks like others are already taking Acalabrutinib. I am curious now because he told me he just finished the clinical studies and it will be 3-4 months before approval. Maybe the people I'm seeing who say they are on it are part of a study? Maybe it was approved for other things?
It will be interesting to see the progression free survival rate for 9 years. He said he was sending it off to medical journals on 7/2/19 so perhaps we will find it soon. If not, I will ask him in 8 weeks when I see him again.
Why can’t he give us a draft of the paper or an ABSTRACT that he may have presented pre-publication. Ask him. He may give his abstract!!!
Awesome post Cajun Jeff. You are teaching us all pertinent questions, I will grill My doctor too. Keep giving us QUESTIONS to ask most helpful and informing. If I could press follow you AGAIN I would.
Luck!!
Good luck Sophie😊👍.
Good luck to you Sophie! I'm sure it will be a very helpful and important visit in your CLL journey.
kim
You are in great hands with Dr. Byrd.
I belong to the Dr Byrd fan club. I took a voice recorder for my first few appointments but he is so thorough in explaining test results and the hows and whys that I no longer record. He marked each page of results with additional comments and some happy faces!
I had been told Ibrutinib if/when I start treatment for the last 3 years but in February he had different ideas from Ibrutinib such as combinations and novel agents that I had not heard of and I read a few CLL forums. I knew in 2017 when everyone was buzzing about Ibrutinib that OSU was already several years beyond that in research from what his team told me. Still in W&W so next year should be interesting.
The James is a wonderful and new facility, well organized. Let us know how it went.
sophia60,
It is a good kind of crazy to be excited about seeing your cancer doc.
I have the same mind about my Super Onc.
Like flying at an altitude above the turbulence. Wish everyone could be this way!
JM
Congratulations! You may have the number one CLL doctor in the WORLD. Give us ever detail and a transcript of what he says exactly. Every single word.
Long term treatment for 11q
Update re visit to Moffit in Tampa to see my Hematologist 
Going to OSU for Second Opinion
