Hi. I went to my gyn last week for female issues and I had blood work drawn. My CBC was 28.10 then a week later 28.4 with smudge cells present each time which is very suggestive of CLL. My mom just passed this April at barely 66 with multiple myeloma with del 17 and I’m petrified as I’m only 46. I went to my moms oncologist who doesn’t specialized in this but is very smart and treats 2 patients with CLL. He has become a very close family friend during my mother’s illness. My cytometry didn’t show cll so he did a bone marrow biopsy and the pathologist stated it is probably and indolent CLL but we have to wait for the bone marrow biopsy. My dr then tested all my blood work again and my wbc dropped to 18 fro
28.4 and my lymphocytes dropped to 12 from 24 in just a week. I have no swollen lymph nodes no fever no other symptoms. Just Intense anxiety and I can’t even work. I’m so anxious. I don’t have insurance as I’m an independent contractor and missed the enrollment period of 5 days until next year. I just think I need someone I’m able to talk to because I’m so confused and scared
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Madison1995
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Sounds like you are gong through a lot Madison! I hope the final results on your bone marrow biopsy come back soon. I assume they are doing flow cytometry on the marrow? Since your first flow cytometry (from blood I imagine) did not show CLL. I have heard of cases like that (the SLL presentation) where the marrow had to be flowed because not enough CLL B-cell lymphocytes in blood to assess it. Good luck to you!
"SLL" tends to originate in a node, so may not show up in a peripheral blood test in the early stages. However if a lymphocyte count is above 5.0 and monoclonal, flow cytometry should work.
I certainly understand your anxiety. Try to do relaxation by deep breaths, listening to YouTube relaxation music. First of all, though you missed your insurance enrollment, there is time to enroll next time. CLL is usually a slow advancer. And your mom’s was indolent. Another thing would to be to get with a doctor who does clinical trials. That way the medication would be free. However, I just thought of the lab tests that would be costly. Again, relaxation is important. A doc at WDAnderson talked about relaxing in the drive to the clinic cause anxiety could raise the white count.
Ok, now I am changing my mind. That perhaps you should stick with your mom’s doctor until you get the insurance. He can watch over your symptoms. In the meanwhile, do look for a CLL specialist who does clinical trials while you are waiting for insurance. I would think you are in the Wait and Watch stage and have time to wait for insurance. Then, there are many good treatments for CLL now. Some that were not around 5 years ago.
Madison, welcome! I am so sorry to hear of the loss of your mother so recently. You have reason to be filled with anxiety, with this added possibility facing you as well as your not having insurance.
The fact that your WBC seem to be fluctuating and not steadily going higher, is a good thing. It is trending of the levels that is important to look at--at it is too early to have that to rely on, however. Other situations of course can cause WBC to rise.
The Flow Cytometry IS where the diagnosis is made, and it tells the story of your specific situation—so you may not have CLL---it is helpful to ask and receive the results of all your tests so you can begin to get the information that can define what is happening for you at this time.
That is stress enough to make your system go haywire--and stress is not good for our immune systems which is also part of the picture that a hematology/oncologist will look into in regard to your health.
I will be thinking of you as the investigation continues to find what is going on. Please know the members here will be here for you, if it does turn out you have CLL. Our aim is to support and educate ourselves and each other.
Let us know when you get more information. And, deep breathing can help some with stress, as well as walking on a regular basis. (I know, it doesn't help to take away the source of your worry, but it will help some to calm you.)
Both blood and marrow can be flowed. Sometimes there is not enough in blood to flow it so the marrow needs to be flowed to make diagnosis. Maybe that's what's happening in this case? I don't know.
Thank you! I just don’t know enough about why the cytometry would show it but everything else is suggestive of it. I’m just scared and nervous and the unknown is horrible. I hat cancer. It has taken my dad at 39 my step dad and 56 and my mom at 66 none of them heriditary and I just want to have a simple long life. My life has been complete hell at times and I try to be so strong but have a lot of trauma and it is literally taking me out with this anxiety
The high anxiety is understandable, Madison. But it can also really hurt your health. If I were in your position of extreme disabling anxiety while awaiting a diagnosis, I would be taking small amount of Ativan. That would be better for health and body than letting major anxiety go unchecked.
I was diagnosed in June 2016. But I may have had it for 10 years prior - in an unsymptomatic form. Which is typical for CLL. I hear you on the dependency problem. I did use Ativan to get me through any extremely difficult period last year, while awaiting treatment on a second cancer, and was very panicked about the treatment doing damage to me. I did not use the Ativan daily, and did not become dependent. But it did help me just knowing I had it there within arm's reach if things got too bad.
"The central difference between Ativan and Xanax is Ativan leaves a person's system more quickly, reducing the chance of toxicity or side effects." rxlist.com/ativan_vs_xanax/...
I think that's why I liked Ativan - I could just take it now and again, when I really needed it. And it didn't have prolonged after-effect.
Oh I’m so sorry. Sounds like you’ve been thru a lot! I have this clogging in my right ear like it feels plugged and had it on and off for a couple months. Have you ever had weird symptoms like that
One thing to keep in mind, Madison, is that even if in the worst case scenario here you do actually have CLL, there is a range of treatments now available. New non-chemo drugs. Most of us with CLL are leading normal healthy lives, and probably will live full-length life. I have been on Ibrutinib two years - a non-chemo drug. Would not even know I am taking a drug, and would not know I have CLL (although I was quite ill before starting).
The flow cytometry looks specifically for the particular chromosomes and cells involved in the blood (or bone marrow) and there is a determined set of possible chromosomal situations that have been designated to determine the different blood disease. Until a given chromosome profile designated to be CLL has been found, the diagnosis cannot be definitive.
I just don’t know why the smudge cells were present twice that is nightly suggestive of CLL or they don’t report them. I also get nervous that I have multiple myeloma which is a horrible cancer. But smudge cells are what is my biggest concern
I don't think smudge cells in and of themselves are the key here. Yes, CLL possibility should be investigated because smudge cells have been detected. But smudge cells could be found for other reasons. Here is a document from American Society for Clinical Pathology:
"Many pathologists consider the presence of smudge cells to be a nonspecific finding and that it is not necessary to include them on the patient report." api-pt.com/Reference/Commen...
I just turned 40 in August. Diagnosed earlier this year but looking at my old blood work, have actually had CLL for 3 years. So far the only symptom is fatigue.
As of my last labs, my WBC is 44, can't remember what my lymphocytes are, but I know they've increased. I have enlarged nodes and spleen. But my oncologist said that he believes i could potentially go another 5 years before needing treatment.
I've learned to make friends with my CLL. I don't bother it, it doesn't bother me. 🤷♀️ lol
The big thing is not to let it consume you.
Im so very sorry about your mom. I lost my dad at 67 years old, 3 years ago. I miss him terribly. ❤
Hi Madison- so sorry for all you’ve gone through and the anxiety you’re in the midst of. I was diagnosed when I was 43, I’m 51 now. I suspect I had it for a few years before as well. I just started treatment in November.
I wish someone had told me when I was diagnosed that as scary as this seems, you’re going to be okay. Every situation is different however treatment has come a long way and there are so many options. Even if you have CLL, you’ll still be okay❤️ This site has been so good for me as there is a wealth of knowledge and compassion here. Hang in there, one moment at a time.
Madison - My grandfather and my uncle (his son) both had multiple myeloma. I’m so sorry that you are dealing with the loss of your mother. I understand your fear, as when I was diagnosed I was very afraid that MM was something I could have inherited.
The fact that you have a hematologist who you know and trust , while you go through testing, is gold, and he is being thorough, going to a BMB rather than just using the Flow done using blood. If it shows CLL it most likely is indolent, as the pathologist suspects. If so, the normal course of action is Watch and Wait - a hard concept to wrap your head around, but really the right way to proceed. Your labs would be monitored, but treatment would not be considered unless the CLL, if that’s whats going on, starts progressing. There are people who go for years, some a lifetime, without ever needing treatment. You will have time to put insurance in place.
Waiting for test results is impossibly difficult. Try to not get ahead of yourself. If your BMB comes back positive members here can recommend good resources, including a specialist if needed. Given that you already have a good hematologist, you might want to do a consult with a specialist at some point, if you do have CLL, and have that doctor work with your local doctor. Many do that.
Let us know how your test comes out. I’m hoping that you don’t need us long term, but you will get lots of information and support if you do.
Above all, avoid Dr. Google! The same reports that said I’d be dead in five years still come up. That was 17 years go for me, and I’m still here and doing well. If you want to read up on the basics, go to cllsociety.org and look at the section called The Basics. Don’t go beyond that for now. You may never need most of the rest, even if you do get a CLL diagnosis. Treatments are changing so fast that anything more than a couple of years old is ancient history!
We have members members in their mid to late 20s through 80 years. There some in their 40s. It may help you to hear from them, when you get a final word of your diagnosis (if it is CLL) for you to post with that question directed at those you want to hear from. Include mid-40s in your title so they will not miss it.
I am afraid there may not be more who see this post---but, check back, there could be some since this is an international forum and it seems there is always someone posting or replying at any hour of the night or day.
Wishing for you an outcome that will not keep you so anxious. Hoping you can have some peace of mind, soon.
I wish o could just meet and bug everyone. You’re all so amazing and kind. It really means the world to me. My mom was my best friend and I need her more now than ever but I believe she will get me through just like finding this group
She is guiding you! She is with you. But not the way we want. I lost my mom 7 years ago. I was fortunate to have her a long long time but no matter what age, we miss our loved ones.
She found out by accident that I had CLL. I never wanted my parents to know. My Dad would have blamed himself. She kept my secret.
I am glad they didn't see me go thru treatment, even tho it wasn't bad. Just the thought of them having to be around and worry would have been difficult.
I hope you have a good support system no matter what your diagnosis is or isn't. Family, friends, co-workers.
Try to do things you enjoy. Distractions are good. 💕
Hi, Madison. I'm just sending you a hug, and adding another voice of welcome!
You have my deepest sympathies on the loss of your mother.
You have certainly had more than your share of family losses from cancer--at young ages!
Please know you have found a group with more than FOUR THOUSAND active members who are LIVING WITH (not dying from) CLL.
My own mother passed from an undifferentiated Leukemia when she was 43 and I was 7.
That was 55 years ago and she has certainly helped me throughout my entire life.
But we miss them mightily, of course!
If you can just get through one day at a time for now, you will find some calming reassurance in the simple passage of time. Your medical report may be much better than you fear.
I think it’s pretty accurate to say that all of us experienced anxiety after diagnosis—there’s just no way around it.
Know that you have all of us to turn to if you need to reach out. There’s a wealth of knowledge and experience here to be tapped into.
It can be lonely having CLL. Iv’e found it is a great gift to be able to so easily connect with those who also have the same disease and who really understand how we might be feeling, physically and emotionally. It saved me to have this site where there are so many kind people who help, support and educate.
Take some deep breaths, be kind to yourself. Reach out whenever you need.
Hi Madison. I, too, am new to my diagnosis, just one year ago. All I can add is that this group has been a blessing for me. As you've already seen, the support here is incredible and the knowledge is invaluable. I have my 2nd 6 month blood check in January and trying not to be anxious and worried. I really don't have symptoms except for a node in my armpit that will remind me once in a while that my body is ultimately calling all the shots! From reading these posts, I have learned to try and not be anxious and that I can get thru this. I wish you all the best. Keep your chin up and stay busy!
Hello Madison, I echo the sentiments of our caring, supportive, and knowledgeable community. Let this be a safe place for you- a place to ask questions, share updates, and vent as needed. We are here for you! Sending power rays of support to you from Michigan. Carolyn
B-R-E-A-T-H-E. You are going to be OK. Really. You are not your mom. Your young body and the current treatments - IF - you even have something will have a different outcome. You are still grieving your mom, and now this. Sucks but, you will be fine but calming down is the best self-treatment you can give yourself. Do not waste time with CLL on line info - statistics totally out of date especially life expectancy. Totally wrong.
The best thing is to go to work, exersize, see friends and plan a fun New Years Eve. Try not to over-share about this.
Every year there is open-enrollment, pre-existing conditions - if you even have something are not considered, so you will get insurance. Its not going to be your last chance.
We all promise you you are not doomed, even if it feels that way right now.
Put away those Kleenex, get off the couch, definitely close the window to the Google app, go outside, see some friends even go buy a cat or a dog so you can think about something else, and just have trust that you will be OK.
I understand how you feel. All of us do. One thing that helps me is to actually feel the fear but do not let it paralyze you. This is difficult but not impossible. And like PlanstaryKim said, stress is not good for CLL. I usually have a couple of standby activities I do when stress and fear come. Mine are playing guitar and watching Animal Planet. Be sure to find yours and do them. Being scared is OK. But keep on going through the fear.
I understand the anxiety and fear. I think everyone feels the gut punch. It is especially bad for you because you recently lost your Mom to blood cancer. I have CLL and was on watch and wait for 8 years. I had a flair up with anemia last year and got treatment and I am now in remission. It is fine to take something for the anxiety. It doesn’t mean you will always be on it. I do agree the the flow cytometry (blood test) tells you what type of leukemia you have. I also recommend finding a specialist (not someone who only has two CLL patients). Specialists will sometimes want you in their study and might not charge you. I saw Dr Richard Furman in NY as my specialist and he works with my local oncologist. Good luck. Next year will be a better year. I also found meditating and yoga helpful with the anxiety Karen in Miami
You’ve received excellent suggestions here. Stress is really bad for our health. Taking something to help with anxiety and stress temporarily until you get more information would be good.
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Fludarabine: rare side effect of destroying ability for red blood cell production in myself. But also unwell with fevers.
Failed bone marrow biopsy
One day at a time
Finished my second opinion today
