Final diagnosis

[Jenny2020]

Hi I just wanted to reach out to all of you who helped me the past month with all of the unknowns. I saw the specialist today and I was diagnosed with atypical CLL. He explained every detail and why my report was so crazy. I feel so much better than living with the unknown. There were some special people on here that messaged me for days with all of my insecurity fear ect. So thank you all from the bottom of my heart. I hope I didn’t run you all away and can still be a part of the forum. Much love

[PlanetaryKim]

Good luck Jenny! It must be a relief to have an actual diagnosis and the clarity that comes with that. At least you can make a plan for moving forward.

best to you,

kim

[Jenny2020 in reply to PlanetaryKim]

Yes. That was a horrible way to live the last month and a half with all the different diagnosis. it seems like there are huge advances in CLL so I pray by the time I need treatment they have even better medicine

[PlanetaryKim in reply to Jenny2020]

So your doctor says you are still in watch and wait? That's good!

[Jenny2020 in reply to PlanetaryKim]

Yes. He stated I had an atypical CLL for multiple reasons. I’m only 46, I was at the cut off range of marginal zone vs CLL as I cut it off right as the time my markers

Were breaking off. I have a very unique case He was wonderful and thought at least 6!years until any treatment. But I asked prognosis of my os rate and he stated I can’t promise you anything however there are newer drugs ect that have come about and we don’t have statistics on those yet as they are so new. So my hopes are that by the time in need treatment more new drugs are better and hopeful for cure.

[PlanetaryKim in reply to Jenny2020]

I think you have every reason to hope for that. We all do

[AussieNeil Partner Administrator]

CLL is such a heterogeneous illness, I'm sure we have room for you . You must be relieved to finally have a firm diagnosis of CLL. Welcome to our community as a full member.

Neil

[Jenny2020 in reply to AussieNeil]

Oh Neil you have been the most incredible person. I can’t thank you enough for all of your insight. Now we are just going to find a cure to this nasty thing

[littledab]

Good luck Jenny!!

[cajunjeff]

Jenny so glad they finally figured it out, no one wants to be typical. Come to think of it, Cll is so different and heterogeneous, I don’t know what the heck typical Cll is anyway. Mine sure hasn’t been very typical.

Now that you have a diagnosis you can get back to normal living. Your atypical Cll has a good chance to be asymptomatic for a very long time.

[Jenny2020 in reply to cajunjeff]

I‘be never been a typical person anyways lol. I believe in my whole heart we will find a cure. How long have you had yours

[cllady01 Former Volunteer in reply to Jenny2020]

Jenny, i am so happy you have got the diagnosis. And, of course, you are a part of our forum. Thank you so much for hanging in there through the ordeal.

[Jenny2020 in reply to cllady01]

Thank you for putting up with all my anxiety and fear. It’s unbelievable the connections of people you don’t even know can relate to that fear and support you al have given me

[DisneyMom]

I didn't know that there was typical CLL let alone atypical. Lmao

Glad you have some answers, the unknown is the worst. Wishing you many years of uneventful watching and waiting!

Carol 🇨🇦

[MsLockYourPosts Passed Volunteer in reply to DisneyMom]

Atypical and CLL often go together. My CLL is very atypical ( or maybe very under diagnosed).

[bkoffman CLL CURE Hero]

Atypical CLL usually behaves like CLL which to say is very heterogeneous. I have an interview with Dr. Jennifer Brown on CLLSociety.org on this very subject. Stay strong. We are all in this together. Brian

[Jenny2020 in reply to bkoffman]

If you could let me know when that interview is and where I could find it. I don’t know if the prognosis is the same for atypical CLL as it it CLL.

[bkoffman CLL CURE Hero in reply to Jenny2020]

As I said it generally is a similar prognosis. Go to CLLSociety.org and search for Brown and you will find the interview from ERIC 2018. Stay strong Brian

[Jenny2020 in reply to bkoffman]

Hi Brian. I tried login to CCl society and waiting for an email to reset my password. I had a question since you seem to have so much knowledge and I do want to see that report you mentioned on atypical CLL. However the reasons my dr yesterday told me I’ve become atypical is due to the bright lambda chain and bright CD20 which usually appear dim in classic CLL. I also had Cd19,22,23,10. The 10 usually marked Marginal Zone. I believe I read one study that the brightness of the two that I have stated there wasn’t a real significance to this after this study that was posted due to the overall progression and OS.just curious if that makes any sense to you and if you’ve heard of patients with something similar

[Jm954 Administrator]

Jenny, I’m so glad you have your answer which must be such a relief after all this time and testing.

You are more than welcome here and you’ve clearly made many friends already. We are all here to offer that friendship and to support you at any time you need it.

Sending lots of best wishes for a more boring and uneventful CLL journey from now on.

Jackie

[Jenny2020 in reply to Jm954]

Thank you Jackie for all of your help and knowledge! I pray we all have a boring CLL or it go away would be even better lol

[Jm954 Administrator]

One last thought Jenny, have a look at the Pinned posts to the right for lots of information and now is a good time to get your vaccinations all up to date.

Take care

Jackie

[Jenny2020 in reply to Jm954]

I’m not sure where Pinned posts are?

[SethB34 in reply to Jenny2020]

Here are the pinned posts, Jenny. healthunlocked.com/cllsuppo...

[very]

Good luck jenny.Onwards and upwards.

jenny uk

[Judyanne]

Hi Jenny, how did they determine you were at the cutoff of mzl and CLL? The reason I ask is my diagnosis is now mzl/Sll, previously Sll. I have dim cd 5, trisomy 12, notch one. Had an excisional biopsy of lung 2018 which was determined to be extranodal marginal zone. Kidney biopsy in 2016 noted Sll.

[Jenny2020 in reply to Judyanne]

Well he did tell me that I was right on the edge of Mzl to CLL. He believes that one of my markers were breaking off from the marginal zone right as I had my labs tested which in turn with my other numbers were my into the CLL bracket. It was the cd10 positive as that isn’t found in CLL but in MZL. The two unusual markers I have is a BRIGHT CD20 and BRIGHT lambda light chain Which is also making my CLL atypical. As this express more dim in CLL. I’m reading now and apparently atypical has worse prognosis than classic cll. Which is breaking my heart. But I’m also reading the thelight chain and cd 20 in studies doesn’t show a real specific decline. So that’s the one question I didn’t ask yesterday

[MsLockYourPosts Passed Volunteer in reply to Jenny2020]

17 years with a very atypical presentation and I'm still here and doing well. Don't get involved in reading too much. Are you comfortable with your new doctor?

[Jenny2020 in reply to MsLockYourPosts]

Yes. I love him. He spent so much time explaining. The one thing I did thought was come home and look up atypical CLL and it said it had a worse prognosis. So that’s when I got scared.

[JustAGuy]

Hi, much of what was considered significant to our prognostic outcome is being rewritten because of the newest therapies. Outcomes for people with previously considered poor prognostic markers are turning out to be similar to those with the "favorable" prognostic markers. Look at clinical trial results on sites like CLLSociety.org from this year or late 2019. The landscape is rapidly changing as results are being published.

[studebaker]

What a relief that must have been for you and your family to get of that roller coaster of emotions and worries.

I wish for you to have nice soft drive from now on Jenny 🤗

Dana

[Jenny2020 in reply to studebaker]

Yes. The more I read about atypical CLL it has a worse prognosis than classic CLL. So that has really mad me sad

[Smakwater]

Jenny,

Please do not feel that you would run us away. You can't get rid of us that easy.

We understand the uncertainty that comes with an abnormal blood test result and the importance of accurate diagnosis.

We all want to offer support to one another while at the same time, we hope to be accurate and respectful at the same time.

It is good to hear that you have a better understanding and a direction to go.

Stay on the high road,

JM

[thb4747]

Very pleased to hear that you have a diagnosis that makes sense to you. My own CLL has been described as quirky! May you remain in W&W for a very long time. As you say, the treatment options just get better and better.

Cheers, Rob

[Jenny2020 in reply to thb4747]

What were your numbers or markers

[thb4747]

I was diagnosed in 2001 Jenny. I don’t have that information to hand. I’ve never had a swollen lymph node and I’ve had auto-immune haemolytic 3 times, which is unusual I think.

I’m currently 21 months in to a 24-month Venetoclax clinical trial and doing very well, though I’ve just cancelled a trip to China in April (for obvious reasons). Now going to Hawaii instead.

[Sucee]

Hi Jenny

I’m so sorry you’ve had to join us!

I too was diagnosed with atypical CLL in my 40’s. Picked up on a routine blood test. I have never been told it has a worse prognosis. Although I was shocked when I first received the diagnosis, I realised how fortunate I was that I was “under the radar” regarding my health, and made sure I would enjoy my period of W&W. After all, being anxious about it wasn’t going to change anything except to make my life more stressful.

I finished 6 months of FCR in November 2018, and was off work for a year because of neutropenia. Now I feel wonderful and am back working as a 56 yr old registered nurse in an acute unit. I protect my immune system as much as I possibly can, and enjoy good health currently. I have been told my CLL will relapse at some point, but I hardly think about it. I am so grateful for all the advances in haematology; it’s the area of medicine where there is always new drugs and research.

I hope in some small way we have all helped calm your nerves. My husband has terminal bowel cancer; I know which diagnosis I would rather have - CLL!

Warmest regards

Sue xx

[Madison1995 in reply to Sucee]

Thank you for your kind words and encouragement. It means a lot. I’m so very sorry about your husband as well. If you don’t mind me asking what made your CLL atypical