Almost a year ago my husband was diagnosed with CLL at 45 after a routine blood test. Since then his lymphocyte count has more than doubled (started at 41, currently over 100). In November after seeing a new specialist, he had a bone marrow biopsy and was told that he has a p53 deletion plus 13q deletion. He was supposed to start FCR in February but the Dr told us this has "thrown a spanner in the works" and is possibly thinking Ibrutinib along with FCR. Recently I read an article about Venetoclax clinical trials which sound promising for aggressive disease which I am going to ask the Dr about when we go back in February. Just wondering if any of you have had any experience with p53 deletions and what exactly this means for us for the future? Google certainly scares the crap out of me!
Thanks in advance!
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MichRae
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A very warm welcome for you first post but sorry for the reason it's necessary.
I haven't personally had a FISH test so live in 'blissful' ignorance of my molecular status at the moment. I can understand your obvious concern but will leave the subtleties of these deletions and subgroups for others more qualified to advise on. I wanted to post this blog from Dr. Sharman as an alternative to the scary and often less understandable stuff on the net. It may help you to frame the questions you and your husband want to put to his Consultant when you see him in Feb.
Hi Michrae. Welcome. I'm afraid I have no great advice to give you but to send my best wishes. Certainly I have learned from here that its a great idea to have all your questions written down with the most important ones first. The lesser ones may have already been answered by the time you get to them. Definitely take notes, you will forget a lot of what's said. I agree, Dr Google is a great tool but often too much information!! Peggy
It's good that you were able to get that testing done for your husband, because your husband has been saved the ordeal of going through FCR, which doesn't tend to perform well on patients with the 17p/p53 deletion.
As you can read in the above blog, 'the devil is in the details' when it comes to what this actually means for your husband, i.e. what percentage of the CLL cells have that deletion and the particulars of the deletion. Importantly, the newer drugs like Ibrutinib work equally well on 17p/p53 deletion patients.
Dr Sharman also talks about 13q deletion here; again what this actually means for your husband depends of his specific deletion damage:
Hello, my husband was diagnosed in 2013 with CLL and has p53 and a 17 deletion.
His WBC numbers were at 64,000 and he had a secondary diagnosis of histoplasmosis. Therefore his doctor used a lesser strength of chemo not FCR.
He was treated for 6 months with _CR? He has done well until last fall of 16. He was put on FCR in April, May and June. We didn't complete the 4th 3 day round of FCR and he can no longer have chemo in IV form.
Our Doctor just ordered Ibrutinib for him to begin next week at 2 tablets a day.
My question is: did your husband take Ibrutinib? Did it help? For how long? At what dose?
Did you insurance pay?
We were told its $20k a month.
My husband is on Medicare age 66.
Thank you for anything you may share with me at this time.
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