All normal fish report. No deetions

[Madison1995]

Can you still have a good prognosis and possible long W&W with no deletions on the fish report, I realize it’s good to have 13q but mine was normal as well as normal for to53,trisomy 12, 11:14.

[AussieNeil Partner Administrator]

I have a normal karyotype and yet despite being diagnosed at stage 4, lasted in watch and wait nearly 11 years. Normal karyotype can be be better than 13q del, but on average those with

13q del do have a longer watch and wait. Your IgHV mutation status is a major influence and I only learned mine 10 months ago.

Neil

[Madison1995 in reply to AussieNeil]

What was your mutation

[AussieNeil Partner Administrator in reply to Madison1995]

IgHV mutated, which fits in with my long Watch and Wait.

[Madison1995]

Yes I don’t see they tested for the 11q on the fish. I don’t know how to upload the picture. I know he hasn’t checked for the IGHV

[Murzik in reply to Madison1995]

Hi Madison 1995! Do not worry: they did tested for 11q deletion, lab used that FISH probe and reported you have ATM normal. It is a gene on 11th chromosome, long arm, and you have it in normal condition.

Best of all, G

[Madison1995]

I guess I figured it out lol

[seelel]

There are no hard and fast rules on this as CLL is a heterogeneous disease.

Although CLL experts will use the karyotype and IgVH mutation status as prognostic factors, next generation sequencing can reveal additional underlying factors.

Also, although a CLL doctor will always say that diet and exercise are essential for good health, it's not part of their medical training. Generally, doctors don't know a great deal more about nutrition than the rest of us. The internal climate determined by the gut biome has a huge effect on the immune system, but research has still a long way to go in this area.

Two people of the same age with the same karyotype and gene mutation status may differ to the extent that one needs treatment 5 years after diagnosis and the other person may never need treatment. How does that work? It is probably those additional factors.

Maybe one day the prognosis of CLL progression will be a little more accurate, but current research money is rightfully targeted at managing disease rather than detailed prognosis.

I'm coming up for 14 years without treatment. Normal karyotype / IgVH mutated.

I'll say it again - we all have crazy blood. Some are just crazier than others.

[Madison1995 in reply to seelel]

Do you have deletion 13

[Madison1995 in reply to seelel]

That’s amazing. That gives me a lot of hope. I wish they would’ve done my IVgH so that’ll be one more thing to worry about

[Madison1995]

Do you have deletion 13

[seelel in reply to Madison1995]

No deletion 13q

[Ironj]

I’m fish normal as well I have SLL and am mutated. I was diagnosed 2 years ago. I’m on watch and monitor. Best wishes John

[Madison1995 in reply to Ironj]

I haven’t been tested yet for mutation. So I see him again in May and going to see if I can get that tested

[Ironj in reply to Madison1995]

Are you in America? If so what medical facility ( oncologist) do you see ?

[Madison1995 in reply to Ironj]

I see Dr Jose Azar at Indiana Univeristy Health

[Ironj in reply to Madison1995]

I was 46 at diagnosis as well .. The Dr’s say 1/3 of people need treatment at diagnosis 1/3 need treatment at some point maybe 10 years or longer and 1/3 never need treatment.

With the new treatments out today the BTK inhibitors are the new Gold standard.

I know it’s a scary time for you and most of us when we are told we have this condition. And I still struggle knowing I have it but the advancement have come along way so try and relax , you’ll be ok.

[Madison1995 in reply to Ironj]

Thank you. I need all of the reassurance. Just a lot to absorb. Especially as young as we are. I suppose time will tell. I am just to figure out all of the terminology and make sure if I need more testing I know what to ask for and then if I’m lacking something then I can try and prepare myself more if that makes sense

[Ironj in reply to Madison1995]

It makes sense, this is a great place to meet very smart caring people that can give you sound advice. How often are you seeing you specialist ? I also see a local oncologist every 3 months just for basic blood work and my specialist 1 time a year.

[Madison1995]

I’m in USA Indiana I see dr Jose azar CLL specially. And where are you

[Ironj in reply to Madison1995]

I’m in NY , I see Dr Mato at Sloan Kettering in NYC.

[Ironj in reply to Madison1995]

Your seeing a specialist so you’ll be in good hands, you’ll be ok.

[Madison1995]

I’d be good if someone says I can live until at least 70 ahaha

[Ironj in reply to Madison1995]

Don’t sell yourself short shoot for 85-90. I’m very confident that we will all be around a very long time with the new meds available. Rest easy and have a good night sleep all will be ok.

[Madison1995 in reply to Ironj]

That would be even better!! I just now worry about the normal Karyotype and I don’t have my IVgH test yet. I just get so confused with all of this. I see certain things that give me hope even in my unique situation then boom I thought a normal Karyotype is a good thing and it isn’t necessarily the outcome

[Ironj in reply to Madison1995]

I understand it can and is confusing but as time goes by you’ll get a better understanding. A Fish Normal is a very Good prognostic factors as Neil posted earlier. 13 is known to be the best then normal, trisomy 12 , 11 , 17 p. So your ok. Again with the new BTK inhibitors they work well with all the fish prognostic factors and with mutated or unmutated.

When are you getting your mutation test done ? Is it via Bone Marrow Biopsy or via Blood ?

[Madison1995 in reply to Ironj]

I’m not sure I’m going to ask him about that in May at my follow up

[Madison1995 in reply to Ironj]

Do you know how people do with normal Karyotype and unmutated IGHV

[Ironj in reply to Madison1995]

With the new BTK inhibitors it’s my understanding people do very well. Note Fish Normal is a Very Good prognostic factor. People are unmuted and are doing very well with BTKs I would have these questions ready for your specialist at your next appointment and ask him. That being said channel your thoughts and read up on the BTK’s also YouTube ash 2019 for CLL you’ll see all your concerns outlined by the top specialist in the world. I’m not trying to pass you on I’m just giving you another source to review, that give you a lot of great information.

Like others have said stay as far away from Google as possible. Google will have you spinning in cycles and giving you outdated and useless information that will scare you and it’s not true information. This condition is in large a very very very so moving condition. And if you need treatment you’ll have a bucket list of meds to choose from.

[closh in reply to Madison1995]

I'm "normal" on FISH and on a NGS panel that tested for about 50 mutations. It doesn't mean my DNA in my CLL cells is normal, of course, just that it's something else that's broken - not one of the 50 common ones tested. IGHV unmutated though and so I started treatment about 2 years after diagnosis. I probably could have waited another year but the Ibrutinib + Venetoclax trial came up and these worked great for me - no real side effects and got to UMRD after about 15 months of popping a few pills. The CLL cells have very slowly crept back since but the last results were only 0.12% of all lymphocytes. I could easily go for a few more years before popping some more pills - will see how it goes.

FISH normal is good but not great. It doesn't matter a lot as far as effectiveness of treatment though if you take ibrutinib or one of the newer targeted therapies. They work really well, even for the trickier CLL varieties.

Graham

[MsLockYourPosts Passed Volunteer]

I was diagnosed young, was very ill at diagnosis, had treatment right away, and 17 years later (plus at least five when symptoms were ignored) I’m still here and doing well.

lls.org and cllsociety.org are good resources for getting reliable basic information and terminology. Stay away from Dr. Google! Too much incorrect and dated information. He said I’d be dead in five years. I’m not.

Yours is thee first post I’ve ever seen with a doctor advising a patient to not hang with the wrong crowds! I guess some of us will have to change the people we hang with! PaulaS - maybe this should be added too your pinned post😉.

Madison - There is a lot of good information in the pinned posts. A good starting place is Paula’s post 30 Tips, which includes basic information that we should all be aware of.

[Newchallnge]

Your in good shape. I wouldn't worry about 13q. Mutation status and the other factors are all really good! I am in the same boat.

[Madison1995 in reply to Newchallnge]

Have you had testing for IVgH mutation

[kaymack]

I am normal karyotype as well. I was diagnosed at Stage 1 and was in Watch and Wait for 4 years before receiving 4 cycles of FCR. I have just started my 7th year of remission. I've been told in the past that a normal karyotype has an average prognosis - not as good as 13q del but not as aggressive as 11q and 17p. I do not know my IgHV mutational status but my long remission indicates I'm probably mutated.