Distressed

Hi

I was diagnosed earlier this week with CLL. The hematologist stressed that my CLL is slow growing and not to be frightned; however, in reading my flow cytometry report, I'm getting increasingly alarmed (especially after reading posts about CD38-positive being a prdictor of a poor prognosis). I must admit that I don't understand much of the technical jargon.

The report indicates: "kappa, CD5+, CD23+, CD20-dim, CD38-positive; a noted expression of CD19, with dimCD20, homogenenous CD23, and aberrant expression of CD5. CD38 expression appears posiive in the majority of the abnormal population (approx 87%). There is no expression of CD34 or CD10".

My doctor said a wait and watch approach is recommended and will see me in 3 month's time. I plan to see the doctor sooner to discuss in greater detail the significance of the flow cytometry report.

Thanking you in advance for listening. I'm just very anxious and trying to digest a diagnosis that I wasn't expecting.

Regards,

Ned

18 Replies

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  • Hi Ned. Firstly, please please try not to panic. I completely understand how you feel and 15 months ago I felt exactly as you do. I'll leave it to those far more knowledgeable than me to interpret your results but just wanted to give you a little reassurance. Try not to rely on 'Dr Google' to much, the advice is often very outdated. Any questions you have, ask here, however small they may be. You will find much advice and support from people who really understand. You will learn to LIVE with this, scary though it is.Massive strides have been made in the last few years and there is so much out there for us.

    Stay strong, try not to let fear overtake you as I did. Take advantage of all that this site has to offer.

    Very best wishes

    Peggy

  • Hi Ned, Welcome to our community, one we'd all prefer not to need, however, here we are. Glad you have found us.

    I'm not going to go into all the details of the report. Let me just say a couple of things.

    First, try not to panic, I know it is easier to say than do at times, CLL tends to be a 'slow burner' with timescales normally in months and years. Plenty of time to get to the level of knowledge you feel happy to know. Most people here are on three or six monthly reviews with their medical teams.

    Secondly, the community here is pretty much selfcsupporting, ask what you like and we'll all share our experiences, but remember your medical team Is your reference for medical advice. Most of us have no medical training but we have our experiences we can share.

    And thirdly (of two!), be careful of Dr Google, there are some strange opinions out there, over time you'll get to know you list of preferred sources for different types of info.

    Regards, rob

  • Hi Ned,

    There are lots of prognostic markers for CLL with more being discovered all the time. Being CD38 positive is associated with a shorter time to treatment, but that's only statistically relevant for a group of people with CLL with that marker. In reality, it's a broad correlation and doesn't apply to individual patients, because of the confounding influence of other prognostic factors, known and unknown and for which we don't really understand the interactions with the known ones! Short version; you won't know to what degree being CD38 positive influences your path with CLL until you live it!

    May that be for a long time,

    Neil

  • Thank you to all for responding to my post so quickly...and supportively (if that's a word). Much appreciated.

  • Hi Ned. I suspect you felt a bit like me on diagnosis. I cried most of the way home, and asked why me? CLL is chronic, not acute. I like to call it a condition. I have lived with it for nine years so far. Many people live a long time with it. There are many excellent treatments available now. There are others on here who might get technical. But you only really need to try to enjoy each day if you can! The doctors will tell you when and what to be treated with.

    Best wishes

  • Hi Ned.

    Having been through this situation, I can only support all the other replies you have received. The fact of being told you have CLL is a shock to the system and difficult to come to terms with. Put your trust in your doctors, they are the experts in your condition and be guided by them. I had 10 years of watch and wait before I needed chemo (B+R) which I finished 18 months ago and am happily in remission, feeling well and getting on with a full life.

    Good luck on your path through this condition and enjoy each day.

    Jeff

  • this can all be so daunting.....and I have read so much on my prognosis and my treatment.....and there comes a time when we have to go with our hearts and make a decision on how to move forward. That is where I am right now

  • Ned

    I am still trying to absorb the diagnosis. I'm still receiving test results on a weekly basis. I'm having trouble with Java printing the results. Maybe we both need to wait and let the doctor help because I've never seen so many numbers. Remember you are not alone so hang in there and start a journal with a page to sk the doctor when you see them God bless and keep

    Sallyurnotal

  • Hi Ned! Greetings from Shropshire, UK. I have lived with cll for 8 years without treatment so far. My old dad is 94 this year and lived the last 30 years withh cll, also without treatment. Things arent always as bad as they first seem. If you do need treatment in the future there are many options available, with good outcomes. Try not to stress or panic - help and supportis at hand. All the best and keep us posted. Cheers! Jess

  • Thanks again for all of the supportive comments. They help. I guess one has to have perpective and develop coping techniques for dealing with the uncertainty.

    N.

  • Hi Ned,

    My wife Yochy was diagnosed with 2 years ago. Our short experience shows the most frustrating thing about CLL is that "no news is good news" and there is nothing you can do most of the time.

    Most people are in the W&W phase and the longer the better. The best haemotologists will say they treat patients not numbers. Your results will be crawling all over the place, but as long as you are feeling and functioning reasonably well (yes, very subjective) they will recommend to carry on W&W. The good news is the longer you hold out without therapy your chances of reaching newly developed solutions grows. A good part of CLL patients live their lives without ever reaching the therapy level.

    I think it took us more than a year to settle and accept the "passive" role we have to adopt.

    6 years ago Yochy was diagnosed with advanced breast cancer. We immediately took the "fight back" position. Became very active, kept morals up despite the difficult year we had gone through etc. With the CLL we decided to take the "lets focus on accelerating living our lives" approach.

    Take it easy, let go of the numbers for some time, go to your oncologists every couple of months with new understanding and new questions and hope you will settle in to the CLL routine....

    i hope i get through to you with my un perfect English....

    Daniel

  • Ned-

    Yes, on diagnosis I freaked out about my +CD38. After almost 4 years on W&W I have just started treatment. The new treatment options for CLL are wondrous and more are coming.

    Deep breath!

    Virginia

  • Hi Ned,

    All those results CD.... is what the doctors use from a "Flow" test to confirm you have CLL and not some other Lymphoma. And while having CLL is not what any of us want, it is treatable and survivable, some of the other Lymphomas are much harder to deal with.

    There is a 2nd test called "FISH" that can identify one or more of the 5 sub types of CLL you have, and in the past the doctors tried to use those results to predict how slow or fast your disease will need treatment. But those prognostic markers have become less significant in recent years, and some doctors delay that test until you are getting close to needing treatment.

    Your own disease will progress at its own pace, and having blood tests every few months should show a trend that is the most reliable predictor of how fast your CLL is moving. Once your Lymphocyte count is above 30k, you can calculate the number of months or years it takes to double. But there is no magic upper number for ALC or Lymph#, it only is used to decide how often you should be examined for symptoms, nodes and dropping Red Blood components.

    There are a series of Patient Power videos you can view to help you understand the doctor jargon and flow tests. Dr. Susan LeClair is wonderful at translating that complex information into easy to understand common language. See

    patientpower.info/video/bre...

    patientpower.info/video/be-...

    Then you can pick from a long list of subjects she explains from this page:

    patientpower.info/bio/susan...

    Take it easy, and chew the information thoroughly before trying to swallow. You can start at CLL 101 cllsociety.org/cll-101/

    But just like a University degree- it will take time to digest all the new information in an unfamiliar language.

    Len

  • Thanks, Len. This is helpful.

  • Hi Ned,

    Welcome to the community of online CLL Support. Sorry to meet this way. This site if very good about answering questions and helping you understand your CLL. I'm certainly not a medical professional, but I will add you to my long list of prayer concerns, if you don't mind.

    I agree with Sally, try to keep a journal. When you feel that you need someone with you to help take notes, get someone to go with you to the doctors. I went through this with my Mother and my husband and kept a daily journal which always helped when I had caregivers come in to assist.

    I was diagnosed with CLL in 2015 and started my journal immediately, actually before I was even diagnosed. It's amazing what you go back and read when you put it on paper. Unfortunately, I also have beginning stages of dementia so ever word I write down helps me.

    Good luck with your walk in life and may your walk be less stressful since joining CLL Community Support. Blessings for you!

    Faye Ander

  • Hi Ned

    Sorry to hear of your diagnosis earlier this week. I hope that you can make good use of the site, the people on here are only too willing to help you in any way they can.

    Of course you are feeling anxious, and it will seem easy for me to say that you should take you time and ease your way into the details of what is your diagnosis, but that is the strength of this site ... no question you ask will go unanswered. We all vividly remember the shock of the word Leukaemia.

    I was diagnosed in 2006, and have not as yet needed treatment. Thankfully my diagnosis is still 'slow growing'

    I'm glad to see that your Haematologist has stressed that your diagnosis is also slow growing ... I won't be able to help you understand your report, as I have no idea what it all means, others will be able to help ... even after ten years I just stick with slow growing.

    I would ask you to try and not get to alarmed about not understanding the technical jargon and predictors ... one of the more unique symptoms of CLL seems to be that it affects us individually more than generally.

    What will happen now ... It is standard practice for your Haematologist to Watch and Wait ... that is their job ... and they will be looking to see if any pattern emerges in your blood counts.

    My pattern is still a slowly growing one, leaving me to deal with any symptoms of having CLL with my GP.

    Listen to your Haematologist ... and ask away here as often as you need to ... the strong point o this site, is that we are not alone with our CLL.

    ygtgo.

  • Hi Ned.....I had a reply all typed and have no idea where it went, lol!

    I can't add much in the line of information, but being new to this whole CLL world (husband diagnosed after routine bloodwork in Feb, no symptoms) I can assure you that the support you will find here is amazing! I know it helped me get out of that dark dark place we find ourselves in after hearing "cancer" and "leukemia". We are much more at peace with those words and our situation thanks to the patient people here, those who are actually living with it.

    I wish you well in this long journey. Knowledge is power and never be afraid to ask questions here!

  • Hi Ned! Welcome to this most wonderful forum! I typically do not post even though I am an avid follower!😊

    I just wanted you to know that in addition to the wonderful advice and information you have received by others here, your diagnosis is definitely NOT a death sentence!

    I was diagnosed in 2006 with stage 4 CLL (the worst possible stage) with my labs being so different that the local physicians weren't sure what to do with me. I was referred to MD Anderson, provided treatment and was in complete remission for 9 years! In 2015 my CLL re-emerged; however, my MD Anderson Team knew exactly what treatment I needed. Once again, I am in remission and my plan is to be CLL "free" for the next 15 years!

    What I want you and your family to know is that you will be OK and if you do need treatment one day, your doctors will have a wide variety of treatment options they can provide based on your unique circumstances!

    In the interim, this group is great at providing reassurance, guidance and information, so ask away!

    Best wishes for a very long and very healthy life!