Hi I was recently diagnosed with Cll B cell I have deletion of the Tp53 and 17p13.1 I am very confused very uncertain and all the info I'm reading I don't really understand. Although I know my Fish test results are unfavorable. Any advise would be greatly appreciated.
Stacy
Hi Stacey!
Welcome...you have joined a group with members that can offer advice and guidance and who are very compassionate.
If you could give a little more information as to what you are looking for that would be helpful. However, even with your FISH results, there are many treatments available to you should that time come along that will work with your genetics.
There are many posts on this site that can help answer almost anyy question you may have. And I know others will be answering you soon as well!
Stacy,
Welcome to the group. Those results do put you at higher risk. My advice would be to see a CLL specialist. Few generalist hematologists are going to have the knowledge needed to give you the best possible outcomes. I am not sure of your current health status, but I would not start any treatment prior to seeing a specialist.
I believe with TP53 there is advanced genetic testing that needs to be done. You will possibly need to start treatment earlier than others with lower risk CLL genetics. Many CLL specialists work in centers that offer drug trials as well. I don't say any of this to scare you, just to reinforce that you need a specialist.
Here is a link to Dr Sharman's list of CLL specialists: cll-nhl.com/p/cllnhl-doctor...
Welcome again.
Thank you so much, unfortunately no one in Mississippi. I'm currently seeing a Hem/Onc at the Herderman Cancer Center. I am so thankful for this site I don't feel so alone.
Welcome...
I agree, you should consult a specialist, likely MDAnderson. They will work with your local hemetologist, so a couple of visits out of state will be all that is required.... The other option might be the Mayo in Jacksonville.
It is very early days and you have time, but you need to look at the top rung of CLL specialist in your case.
Many new treatment for 17p deleted now and more on the way...
~chris
This may sound crazy to you, but MD Anderson is about 6 1/2 hours away. It is in the top 2 cancer hospitals in the country. I would recommend trying to get a 2nd opinion there if possible. I would hope they could work with your local doctor while on Watch and Wait. When the time comes for treatment you will already be established there.
I drive 2 1/2 hours to see my doc. I know it is a financial and time burden, but it will be a gateway to top care and the latest trials. Hopefully someone with TP53 and 17p deletion can give their opinion on this.
Completely agree. I would get established with a local doc and travel to md Anderson for a 2nd opinion/to get established there. We got our 2nd opinion from dr wierda there. If you have to have CLL and be 17p- this is the time to have it. So many new options whereas just 6 years ago you would have been limited by only FCR which is not responsive to 17p-. Lots of great recent studies showing how responsive new agent drugs are. Welcome to the group, it really has been so much help to us now 8 mos in on this journey.
Hi. Newly at this site. So glAd I found you. Also 17p deleted. On imbruvica for about 3 wks. So far, so good. Am seeing a top hem/onc in ft worth. When I found cll had returned and mutated after 5 yrs was very concerned abt imbruvica . Today saw doc and had page full of questions thanks to you all.
StaceyA....you are not alone! You can always ask a question on this site or if you are uncomfortable, you can message me thru this site as well.
Seeing a specialist is important. A lot of people do travel a few hours to see one and then work with their local person.
Welcome Stacy. You have already received some good advice from concerned group members. Try and systematically read some more about CLL through the links on this site and listen to the videos and get comfortable with the terminology and the various risk factors. That way when you get your opinion at Md Anderson you won't be just a listener you will be able to ask some informed questions and get some answers relevant to your life and concerns and I think you will find it more satisfying. It takes time to feel like you understand the disease, what you want and need to know.
Hi Stacey I'm also 17p been in watch and wait 2 years a now about to start treatment this Wednesday. This is where havingredients 17p can be if you allow yourself to be beneficial as we go straight to the wonder drug ibrutinin no horrible chemo for us . Myself after being diagnosed I continued to live as before and that included drinking working living. Now I'm about to start treatment the drinking will have to go but as I understand it from many others life carries on. And that is all we can do welcome to the group and stay positive
I am 17 depleted as well on I plus V and still drink a bit. My doctor said it was OK!
Thank you so much, please let me know how your treatment goes and I will keep you in my thoughts and prayers.
Yes of course Stacey sharing is caring all the the best
1. breathe! 2. keep calm. 3 connect. 4 seek expert advice. 5 become your own expert. take care
You are among friends and those who can help you understand and navigate through the challenges ahead (though I hope yours will be few and not for a long time). I would only add the advice not to just "Google" for info. Too much of what is out there is old, misleading or just plain wrong. This site is excellent for learning what is new, under good study and accurate.
Hello Stacy. Welcome. I am new to this group as well Everyone is kind and generous with support and infofmation. I have the same diagnosis with 17p/Tp53 deletion and understand your confusion. I have been watch and wait for a year and a half. It is a lot to take in, so try and read as much as you can and stay positive.
Hi Stacey. Welcome to the family. As posted by others, you are in the best possible .place for support, advice & knowledge.
Hi Stacey. While I don't have 17 deletion I understand totally how you are feeling at the moment. I was only dx last year and think I will need to start treatment soon but I feel so much better having found this site. You will find support and compassion here - whenever you need it. Or just to vent about something. I do agree totally about seeing a CLL specialist. A very warm welcome to you!
Stacy, one of the lines that is oft repeated in our CLL community is that "everyone is different." I am one of the very different ones and it's a good thing. I was diagnosed 11 years ago and because I had a high positive CD 38 marker, requested a FISH panel. Out of the three CLL buckets (the good, bad and the ugly), I was in the ugly bucket. But I have never needed treatment and my counts are still barely out of range. My hematologist says he's seen this before. So the 17p, P53 "sentence" isn't always what it seems. Take heart, and heed the sage advice of the others who have replied.
Hi Stacy. Lots of great advice given so just adding my welcome.
As already said, no two people react the same. You can have poor markers and progress slowly or good markers and progress quickly.
Please try not to worry (easier said than done I know) There is so much hope out there for us now and you've come to just the right place to learn all about it.
Peggy
Stacy,
I am 17P deleted. I am 53 and was on Watch and wait for a year. I start a Combo Therapy Clinical trial in January. It combines the 2 best drugs Imbruvica and Venetoclax.
Stay on Watch and wait as long as you can but look for where you might do a combo trial. With 17P a combo therapy is best.
CLL Society Web site is a great resouce.
Watch the follow video below to learn alot. The best video I have seen.
Things are improving for us 17P people!
Tell me if you have any questions;
Thanks,
Hoffy
We are extending the time for the stream to be available to you through the weekend. We hope this will help everyone have a chance to view it at their convenience. It is recommended that you use either Firefox or Internet Explorer as your browser. (Google Chrome and Safari are presenting playback issues). Thank you for your patience.
mediasite.osu.edu/Mediasite...
Thank you for joining us for “Ask the Expert: The Treatment Landscape for CLL”.
Stacy - The CLL Society web site mentioned above is cllsociety.org. There is a good list of links to reliable, CLL specific resources, information about local, in person support groups, a link to a patient generated list of doctors (with links to two others), as well as good information.
Absolutely avoid just googling - too much dated and incorrect information. Things are advancing so quickly that anything more than a couple of years old is likely to be dated.
Take a recording device to appointments, especially while you are learning the lingo. It really helps to be able to listen to everything more than once.
As you settle in here you might want to restrict your posts to community only. The original post in a thread controls the privacy of everything that follows it. You will usually get more responses about a guestion if your post is locked (you can edit to lock by going to the v at the bottom of your post, then scrolling down to the bottom anf clicking on community only).
Hi Stacy,
All advice to seek consultation with a CLL specialist is a smart first priority. I drive 450 miles one way to be managed by the CLL expertise of Dr. Byrd at OSU Medical Center in Ohio with gratitude that I have that option even though it is a burden of travel and time. If you qualify you might be eligible for lodging discounts when needed to stay overnight.
With your FISH result of 17p deletion the management by CLL specialists is very important and the good news is the recent development of new drugs that work very well with poor markers.
The mind can become a traffic jam when first diagnosed so take a deep breath and know you are in a great community with much to offer.
WWW
I also am 17p deletion. At first I was seen by a general oncologist but then I was referred by them to a CLL specialist at Duke. I was on watch and wait for only about 6 months which was nerve wracking beyond belief. I too recommend seeing a specialist and if at all possible to have your treatment planned and monitored at a comprehensive cancer center. Not sure where you are in Mississippi but Moffitt in Tampa is an additional option to MD Anderson. I haven't researched where else you might find a specialist. With 17p, when you do need to be treated it will likely be with an oral agent so you could expect monthly visits initially with the intervals growing as you improve or stabilize.
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