Newly diagnosed too, stage 0: I am 53, I found... - CLL Support

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Newly diagnosed too, stage 0

patilin
patilin
28 Replies

I am 53, I found out due to my yearly checkups, my WBC are in 12000 which I understand is nothing yet. I did the FISH and I have the 13q deletion, not TP53 mutated and IGVH mutated. After the initial shock which was due to lack of information, I am doing ok. I haven’t been to my doctor to explain my results but what I’ve read they are in the better side.

28 Replies
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Panz

I want to take this opportunity to welcome you to our community...it is a very caring and intelligent group of people with every level of CLL there is....there is just so much to be learned but there is always someone who is here that will be able to answer your cares and concerns. The one thing you will learn is that we are not alone. Please stay in touch and share what you wish,,,,good, bad and ??? Panz 🙏💕☘️😍

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patilin
patilin
in reply to Panz

Thank you so much!

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lankisterguy
lankisterguyVolunteer

Hi patilin,

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Welcome to the club none of us wanted to join. But from your prognostic information, you maybe one of us for a long time before you need treatment.

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There are lots of resources you can use - right on this very page. Look for a box labeled "Pinned Posts" everyone of the top 5 posts is worth while reading.

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There is another box labeled

Related Posts

*Newly diagnosed CLL, stage 1

*Diagnosed stage 0 and seeing doctor soon

*Vaccinations newly diagnosed cll stage A

*Newly Diagnosed stage IV CLL/SLL 1/18/17

*CLL Stage 0 and VA Disability

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The related posts listed will change to match the title of the posting title you are reading, so please explore those.

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(to find the Pinned & Related boxes- look in the upper right column on computer screens or scroll way below on mobile devices).

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Len

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GMa27

I was 52 @ dx and have same markers. Was on W&W 12 years and felt great. I just kept up with my 4-5 times a year check ups with my hematologist. My Dad had CLL for 30 years and never needed treatment. Lived to 94.

In my 10th year nodes popped up. Then anemic. I got second and third opinions from 2 CLL experts and had FCR chemo at 63. Only needed 3 cycle and in remission 16 months. Feeling great.

Hope you have a very long W&W ! 💕

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Sushibruno
Sushibruno
in reply to GMa27

Your story and your dad's story is very encouraging i like to here people having cll for so long and even not needing treatment. It Keeps me going. I fear Richter's the most and can't get it out of my mind. I don't know why i wish i didn't have these thoughts..... it's debilitating. I hope to surpass this and not give it any more attention. My mind plays tricks on me all the time and even though therapy has helped me it's always there like a nuisance.

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GMa27
GMa27
in reply to Sushibruno

I did panic for 4 -6 months after dx. But I felt good and had a wonderful positive hematologist. She said go out and enjoy and I did! After the second year....seeing how great I felt and my numbers were so slow...I would just think of it nite before appts. I practically forgot I had CLL.

Richter's is rare. Don't focus on that.

I was not on internet or in any groups till my 10th year. Not saying that is what people should do...but I had no idea about these sites and in a way was a blessing during those early years. It helped me forget about my cancer and just live. I would have not done well with a daily reminder.

Hopefully you will find serenity and not focus so much on what ifs.

Totally normal but stress isn't good for us. 💕

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Sushibruno
Sushibruno
in reply to GMa27

Thank you GMa so much your words mean so much to me.

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patilin
patilin
in reply to GMa27

Good for you and your Dad! We hope for the best!

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cllmom

I know what you are going through. I was 50 when diagnosed with CLL and am 13Q deleted, mutated, and stage 0. I am now 53 and still on Watch and Wait. My WBC was about the same as your when I was diagnosed. I did have to have my tonsils removed last year as they became enlarged with CLL. I am doing well, but my numbers have climbed some, but not to bad and still do not need treatment. I guess you have to look at our condition as kind of like being pre- diabetic. We have to be monitored, and maybe one day we will need treatment. Now days that treatment might be taking a pill, verses some of the harsher treatments from the past. I was overwhelmed when diagnosed, but I decided to live my life, and try not to ponder on my diagnoses. Which isn't always easy. The advice I would give you is hang in there, go to your appointments, exercise, try to eat healthy and know that your immune system is somewhat compromised so try to avoid people that you know are sick. You are going to be okay, hang in there. It does get easier as time passes.

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cajunjeff

Welcome to the forum, sorry about your diagnosis. There is quite a learning curve with cll. 13q and mutated is certainly the good bucket to be in. But even among subtypes of cll there are many variables. Knowing your type does help because, on average, your cll will act more like someone's on here that is 13q and mutated as well than some other subtype.

As Len wrote, you could be many years away from treatment. You might never need treatment. If and when you do, there are many treatment options. The newer treatments are non chemo and very tolerable for most people. Right now there are literally dozens of clinical trials going on around the world trying to find the right combination of these new and exciting drugs to hopefully find a cure.

And I think I can write this without sugarcoating it even if no cure is found, most people diagnosed today with cll have an excellent chance for long term disease control to lead normal lives and a normal life expectancy. Do not waste your time looking at cll life expectancy tables, they are all outdated and do not take into account the new drugs. If you ever need to treat, its even money the new drugs will be outdated by then.

The counter intuitive thing about cll as compared to other cancers is that catching it early usually offers no advantage. There is no advantage to early treatment. You might go ten years or more before any symptoms at all, so after you adjust to the diagnosis, don't let it get you down.

My advice would be to find a good specialist at a major cancer center and get an evaluation now. He or she will probably put you on a annual visit schedule if your cll is indolent and slow growing. The landscape with cll changes so fast, mostly only true specialists can keep up with it. I would establish a relationship now with a specialist just to monitor me, others are comfortable with their local doctor.

Sorry about your diagnosis again. It felt like the end of the world to me when I was told I had cll. It sucks, but there is way worse news I could have gotten.

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albie58

Hi Patilin!

I was diagnosed at 49 in 2008 and am still in W and W. I have the same markers as you do. My WBC at the time was 14 and now has climbed to 80. My spleen has gotten bigger and there are a few nodes hanging around. But, knock on wood, I feel fine and have had no frequent infections! So hang in there! We all know it's a tough run when you are first diagnosed, but as CLL mom said, there are a lot of new meds out there and more in the pipeline that are being used to control our CLL when the time is needed. For now, if you are really anxious, find a support group or maybe a counselor will help. Seek out a specialist, if you don't already have one, and most importantly....take

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albie58

I wasn't through!! take each day and enjoy it fully! You will be fine!

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baq724

Also 13 q and mutated. Was diagnosed at 46 in 2016. Most likely could have been diagnosed in 2012 at 42. My specialist looked at old blood reports and identified when my WBC/ALC went above normal and began it's upward trend. I am still in W&W and seeing my specialist at MDA every 3 years and my local hematologist yearly. Next appt is in December. Last report in January had my ALC at 24. All other counts normal. I don't anticipate it to be much higher in December. I still feel good. I exercise regularly and enjoy life. I was a wreck at first, but this group talked me down from the ledge and I now have no reason to doubt that I will be ok and live a relatively normal lifespan. Sure, I may need treatment down the road, but I am confident treatments will only keep getting better. There are still patients from the original FCR trial (good for 13q and mutated) who are 17 years plus out with no disease progression. My hope is that there will be a time limited therapy developed that is non-chemo that will be as good for people like us. Many people believe those combos are either being used now, or will be so in the not too distant furture. Welcome and feel free to ask anything here.

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Canuck901

You’re young and you have low risk markers so you’re fortunate

Stay healthy and for you should be good for a while and they have new combination trherqpies on the horizon which are very effective in wiping out CLL

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patilin

I am taking it easy since you have to wait, that was kind of difficult at the beginning but Now I got it so I will have my regular 3-months check-ups and nothing else, thanks for all the replies and support!

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noeagaman

Hi and welcome to the group. This is a great place to come to for support when you are down or if the going ever get's rough. I am also 13q and mutated and was told that I had good markers, but needed treatment 2 years after diagnosis. That treatment was FCR back in October of 2017 and I have been in remission for 2.5 years now. You have good markers so hopefully you will have a long watch and wait and treatment by then will be easier on your body and give a cure. Hang in there, the beginning of this journey is often the hardest to handle until you settle in for the long and steady journey.

Chris

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patilin
patilin
in reply to noeagaman

Thanks, can’t do anything else right now! Thanks for the support!

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KAS8

Hi and welcome!

The CLL diagnosis is very scary but, once you’ve got your head around it, you’ll find a way to deal with it.

From what I understand, 13q is a slow burner and a “good” one to have (if you have to have it!)

The medical breakthroughs recently are amazing with more coming. Medication that inhibits parts of the cancer cells from living or multiplying rather than the traditional chemotherapy, At the moment, they tend to be second line treatment other than those with 17p or TP53 deletion, however that may change in the future.

I wish you luck and good health xx

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Sojomama13

Hi Patilin,

I am so sorry that you are going through this. I would encourage you to read the pinned posts on this site for information on this disease. I would strongly encourage you to resist the lure of Dr. Google, most of the information is outdated and inaccurate. I think that you should also look into finding a CLL specialist. A CLL specialist is very well versed in the disease and with all the intricacies of this disease, will recommend treatment at the right time.

Upon my own diagnosis at 52, I was an absolute wreck. I found this site and the people on it to be a godsend. Overtime of sitting with the disease, I shifted my thoughts from death sentence to wake up call. While on Watch and Wait, I changed my eating habits, became more active and became more present in my day to day life. Although I am not ready for treatment, I felt the more I could do to get myself in the best shape possible, I would have more treatment options and hopefully, tolerate treatment better.

Wishing you all the best and a very long and uneventful W&W.

Sandy

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patilin
patilin
in reply to Sojomama13

Thanks! That is exactly what I am working on! Not yet there though but little by little!

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fishnman

Hi Patilin, and welcome! I'm not very active of the forum, but your markers strike very close to home. When first diagnosed, my local cancer specialist had me set up for chemo the next week. I resisted, found a great CLL specialist and have been W&W for 7-1/2 years.

My advice: let the people on this forum know your location and get references as to the nearest good specialist.

I live in NC and drive 3-1/2 hours to see the research doctors at Duke University. I schedule an early appointment, my wife and I drive up the day before to shop and enjoy the area.

Their lab takes less than an hour to have blood results to my doctor, so I'm always finished with her by noon and on my way home. Doing this every 6 months isn't all that bad.

Good luck!

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patilin
patilin
in reply to fishnman

I live in Guatemala, but my family has a house in Miami, so I figured Miami was a good place to go. I went to Miami Cancer Institute where they did all my blood tests. I will go one a year and will do the tests locally. Thanks for your post, it is encouraging.

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patilin
patilin
in reply to fishnman

Good for you! Thanks, Very encouraging!

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vog292

It took 13 years for me from initial diagnosis to require Imbruvica, which has after one year produced improvement.

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patilin
patilin
in reply to vog292

Great! How is it going?

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vog292
vog292
in reply to patilin

No CLL problems as far as I can dedect. The next tests may show the medical reality. I recommend diet and excercise - that is call you can do. For music therapy in the morning use the video : YOUTH ORCHESTRA BAHIA TICO .

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J_88

13Q and IGVH is the best deletion to have.

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patilin
patilin
in reply to J_88

It is good to know!

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