Anxiety CLL/recently diagnosed/cd38

[Bryanb]

I am 47 and recently diagnosed with CLL although still waiting on some test results from biopsy on enlarged mesenteric lymph nodes to provide more info. Blood test did show I am positive CD38 which has scared me more than when I just knew I had CLL. Doctor said I would be watch and wait since my only real problems are slightly enlarged nodes and slightly anemic. WBC normal range platelets normal etc... How do I concentrate on other things such as work and actually anything when CLL is all I think about? Also does anyone know realistically with CD 38 how long I could stay watch and wait? Thanks for any help or pointers. I just seem so anxious right now and hearing from others really helps.

[cajunjeff]

Hello Bryan, sorry about your diagnosis. It’s really impossible for anyone to predict the course of your Cll knowing only that you are CD 38 positive. Your FISH testing and IGHV mutation status have much more prognostic value. Being CD38 positive is considered a negative marker, but it’s just one of many markers and on its own doesn’t tell you much.

It’s normal to be anxious at diagnosis, we have all been through that. With the new treatments for Cll, many if not most of us have an excellent chance to live normal life spans. You could be in watch and wait for many years, no one knows.

I went about three years in watch and wait. I am taking an oral med now with few side effects. I am working and playing full time, I am headed on a trip to Norway in the summer. Since my diagnosis I have been to Spain and Argentina.

It’s the best time in history to be diagnosed with Cll. There are some drugs now that treat Cll like high blood pressure and keep it under control for years, if not indefinitely. I don’t feel like I am sugar coating it, there is great hope for people newly diagnosed. People are living very long lives with Cll.

[lankisterguy Volunteer]

Hi Bryanb,

You posted an almost identical message 6 days ago and got 10 excellent replies.

healthunlocked.com/cllsuppo...

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What additional information do you want?

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Len

[Bryanb in reply to lankisterguy]

Len. I appreciated those replies more than you will know and read each multiple times. I think I did have some new info that may be important and I guess I thought the anxiety would get better and not worse but you are right that my other post was similar. For me right now it is just the more info the better and I hope at some point I can be of help to others.

[Cllcanada Top Poster CURE Hero in reply to Bryanb]

Don't rush things, it takes time to come to terms with the new you. I was diagnosed 20 years ago so things are a bit foggy now, but my sister was diagnosed just last year, so, I have been relived a diagnosis through her eyes.

It's totally normal to have anxiety and I recommend you talk to your Hematologist and ask for help to get over your negative feelings.

CD38 is only one of many test you will have over the next few years, so your CLL doctors and yourself gets a better understanding of this highly complex and varied blood cancer...

Be proactive...its amazingly empowering...

~chris 🇨🇦

[AussieNeil Administrator in reply to Bryanb]

For many of us, the uncertainty of living with CLL is the hardest part. Perhaps coming to appreciate that in general, our membership do get on with their lives in an increasingly positive time to have CLL can help you come somewhat to terms with this. It can take years and even then the anxiety does resurface at times, but it will get better.

There are umpteen prognostic markers for CLL, but they can only be indicative of what your path will be. You just have to live it a day at a time and come to appreciate the gift of life more. Don't let CLL steal more than it can. Seek professional help if you find anxiety is robbing more of your life than the CLL!

Neil

[Sojomama13 in reply to AussieNeil]

Well said.

[cajunjeff in reply to lankisterguy]

Lol Len, I thought I had answered the same question earlier.

[Bryanb in reply to cajunjeff]

Cajunjeff. My other post was similar but this one had some new info that I thought might have been important. I apologize for having you answer twice. This forum has been amazing and the last couple of weeks with surgery and Dr.appointments etc.. have been crazy. I do really appreciate your replies and even read them to my family members who had questions about CLL. I will not post anything else for a while but glad to know your CLL is under control.

[cajunjeff in reply to Bryanb]

No worries Bryan, I didn’t mind answering twice. Post all you want, it’s a confusing and anxious time after diagnosis. We all go through it. 👍

[Sushibruno in reply to Bryanb]

Bryanb, you can come on here any time with any question that you have, do not hesitate for one minute there will always be someone here ready to help and give their best advise to you. This is a very hard time for you especially if you are newly diagnosed. It will get better within time (i didn't think it was possible for me) but it did. I'm not saying life is the same like it was before diagnosis but I'm managing to stay active and am being more positive than a year ago (when diagnosed) it will happen for you too. So please feel free to express your feelings here no matter what you're going through. This community helped me out tremendously when i was feeling the same way. 👍👍

[Ironj in reply to Sushibruno]

I agree it’s a very anxiety provoking diagnosis when your first told. As time goes on I like Sushibruno was a train wreck. It’s been almost a year that’s flew by because I didn’t live my life , anxiety controlled the past 7 months or so. I am much better now as I understand this condition is a chronic condition. If you need treatment there is a lot of treatments out now. I wouldn’t look at life expectancy on google as you’ll get inaccurate information. People live a long time with this condition. And as time goes by I can only assume treatments will give us normal life spans. I’m your age as well. Thanks John

[Sushibruno in reply to Ironj]

👍

[garyherm in reply to Sushibruno]

Sushibruno, very pleased to hear you are doing better now.

[Sushibruno in reply to garyherm]

👏👏

[Sushibruno in reply to Sushibruno]

the struggle is there. But Im ok. I hope you’re doing well yourself.

[Sojomama13]

Bryan,

I read your post and the emotion you conveyed reminded me of where I was not that long ago. BREATHE. The diagnosis was overwhelming. This whole watch and wait thing went against EVERYTHING I had known about cancer, albeit solid tumor, in the past. I was thinking "Why the (Insert Colorful Language Here) are we waiting to treat? Let me get this straight... We just let my cancer get worse and then we treat? Are you bleeping OK? More Colorful language here..............

Fortunately, I found this site. I got myself into a CLL specialist and had more in depth testing FISH etc. I stopped looking to Dr. Google for information. As time passed and I got to sit with the diagnosis, I slowly stopped awfulizing and catastrophizing every ache, pain or spot. I promise you will too!

It is one word, granted a very scary word. I chose to not make my life or identity myself about that one word when I have so many other words to choose from. Take it as a wake up call. You will find although we all have CLL, our journey is individual. Cry, Scream, yell, whatever it takes. You will get through this. You are not alone. Maybe one day down the road, sooner than you think, you will be responding to someone who is where you are today. You got this! We are in this together.

Warmly,

Sandy

[garyherm]

When I found out about CLL initially I kept busy with work and hardly gave it a thought, for quite a few years. I'd have annual reviews and was holding hope that I'd be one of those who progress so slowly that I'd never need treatment. You could be? Anyway, this group has been great. I've learnt so much about CLL and no matter what stage you are at there are others here willing and happy to offer their own personal experiences. And some of them know so much. At one time I was feeling a bit overwhelmed by some of the posts as some of our fellow members were doing it tough. I got a very helpful message from one group member. He said to remember that there are a lot of members who are doing well (still in active monitoring or on treatment) and understandably they rarely post. Helped put things in perspective.