How bad is this ?

[Mdudar]

17p deleted at 5 percent w 53. 13q st 8 percent, ighv unmutated, cd38 negative. The 17p marker is not good yet DR says the other features somehow make up for It, despite the 17p. Comments ??

[Spacee]

My husband has the CLL with much worse mutations but it does include the 17p. He is very stable (labs, I mean). Was just diagnosed this year but can trace the CLL back to December 2014. He is on W and W . When the mutations were found, his 6 month visit was upped to every 3 months. But since he has stayed stable (tested and internist at regular visit last month), it seems he will be back on the every 6 month after the end of January visit with the oncologist. (Meaning he is tested more often than every 3 months since his visit with the internist is inbetween and does a CBC as routine lab.

Hope that makes some sense. He is 70 works full time still and plays golf twice a week. We are not expecting treatment soon at all.

Spacee (Linda)

[mgh348]

Your other markers don't "make up for" 17p. As stated in replies to your previous post, newer therapies are effective against 17p. You don't want to have the older chemo treatments.

[gp7591]

The topic of "markers" and deletions is a very complex one- and outlook even for those with the more challenging markers has improved dramatically in the last 5 years. I am new to all this and not a doctor- diagnosed with CLL in May 2017- but I have learned a tremendous amount from this and other Forums on CLL and speaking with highly knowledgeable people who have CLL. In a nutshell- there is a huge range of "markers"/deletions displayed in CLL patients. Some are very fortunate in having few or none of the challenging ones; others have one or more of them. As I understand it, 10-15 years ago- before the more widespread utilization of Igvh/FISH testing, most patients were treated with the "gold standard" FCR (Fludarabine, Cyclophosphamide and Rituximab) which worked very well for many, not as well for some. With the FCR treatment- you are getting "chemo" in two out of the three- the F and the C. Rituximab is a monoclonal antibody which is very effective, but is not chemo. FCR is NOT for everyone. Problems with chemo are well known- possible cell damage to organs or bone marrow, possible lasting genetic damage/mutations which can cause secondary cancers down the road. The last 3-5 years have seen a remarkable increase in highly effective drugs and so-called "inhibitors" to treat CLL much more specifically than by "killing off" CLL cells with chemo. While the FCR results after 15 years or more appear to indicate some people may be effectively "cured", others do relapse; some others develop these secondary problems. Newer treatments like Ibrutinib, Venetoclax and others largely avoid those problems and appear to be very highly effective. Ibrutinib has only been around for about 6-7 years, Venetoclax even more recent, so long term data is not yet available- but the newest therapies are now focusing on "combination" treatments- combining Ibrutinib with Venetoclax, which have shown remarkable success rates (80%- 100%). Some people are MRD negative (no sign of disease) within the first year. Ibrutinib is approved for 17p patients and even with that more challenging marker, a high percentage of them (roughly 70% or more) do very well. I highly recommend that you see a true CLL specialist- NOT just an oncologist. That will be the very best thing you can do for your health. A CLL specialist will be highly knowledgeable in all the latest treatments, clinical trials and best options for you. In summary- while getting diagnosed with CLL is not a particularly pleasant thing, there has never been a better time to have this condition- because researchers believe that they are approaching a time when then can effectively control the condition long term- and eventually cure it. Wishing you good health!! -G