Pug love, you found a good place to gather info on Cll. To answer your question, it’s hard to say there is an average time to symptoms and treatment.
If his FISH test shows favorable genetics, he might never need treatment. Cll is so heterogeneous that it’s different even among people with similar genetic Cll types. People with unfavorable genetics can go many years without treatment too.
Here is an article I did where I tried to dumb Cll down for people just diagnosed. It’s a complex disease with a steep learning curve. Just know that Cll is very treatable these days and most everyone newly diagnosed has a very real possibility of dying from something other than their Cll.
CLL is a confusing disease not only to those of us who have it but also to our family and friends. With his WBC still relatively low in CLL world, he may feel fine physically for years. Mentally, he may feel fear of this new unknown disease.
The typical experience is for a person with CLL to stay in Watch and Wait for awhile, meaning years. At some point, the CLL specialist will recommend treatment. There is no cure yet for CLL but treatments have improved tremendously in the last five years.
He is very likely to die with CLL rather than of CLL.
Some actions newly diagnosed people do is to get caught up on all vaccinations for pneumonia, shingles, flu and Covid. His immune system is working better now than it may in the future in W&W.
Another step is to find a CLL specialist who is aware of all the recent advances. He will likely have a better experience going forward.
Exercise is what I was told to focus on, along with sleeping and eating well.
It might also be a good idea to catch up on any other tests that he may have put off, such as a colonoscopy, heart check, skin check, and diabetes.
For perspective, I have been on W&W for five years. I may be starting treatment soon. My absolute lymphocyte count was 274 at my last visit. They have doubled in the last six months and my hemoglobin is low (10.7). Those measures along with assessing my lymph nodes for growth are some of the considerations to start treatment.
This forum is an excellent place to learn about treatments, the lingo involved with CLL, the mental challenges and physical challenges of this disease.
Right out of the gate, he is lucky to have you on his team.
Please you folks just keep the faith…..we have all been down this path and it is truly a huge shock and there is an adjustment period and the testing does take time. Just be aware some people never need treatment and those of us who do need treatment there is just so much available now and much more in the pipeline.
So happy you found our special community as fast as you did as we are a super community of very caring and a whole lot of very intelligent people. We are able to offer support on many levels.
I personally have had CLL for 33+ years and am currently on my third line treatment and doing super.
Just remember we are here for you and your husband!!!
Hi Puglive55: I was diagnosed 5-years ago at age 55 so I can relate to your husband’s situation. My first piece of advise is get him to a CLL specialist if at all possible. If it isn’t possible you can access a CLL specialist on a Zoom call via the CLL Society’s web site. It’s an excellent resource. The only requirement is you must be located in the US. Thus, your husband qualifies!
Regarding your question when do symptoms set in it is very difficult to know since CLL is a heterogeneous disease. Everyone is so different. Some folks never have symptoms and others like myself have symptoms quickly and need treatment within months of diagnosis.
Another important action you can take is to read the pinned posts on this website. There is an extraordinary amount of educational information in the pinned posts. Please get educated. The good news is if you have to have cancer CLL has one of the better prognoses. Many patients live life fairly normally.
Please try and relax. It is highly likely your husband will be around for a long, long time. Don’t be afraid to ask questions. That is what we are here for!
We were in exactly your place 6 years ago when my husband was diagnosed. Completely devastated and so confused. Thanks to this site and it’s supportive members, I have learned so much - in fact more here than the drs.
I promise you that your minds will settle down in time. Ask any and all questions here….these people are the best!
Welcome to our community, to you and your husband. You've found a place where you'll find plenty of understanding support as well as lots of evidence based materials to help you both understand this very heterogeneous illness and how to live well with CLL. Have a look through our Pinned Posts section here: healthunlocked.com/cllsuppo... while you wait for those test results to come through, then to find out what they mean, post them so your post is only shared with our community to maintain your privacy.
From what you've shared, your husband appears to have been disgnosed in the early stages of CLL. If you share the results from your husband's Flow and FISH tests, these have some markers that can provide an indication of the likely tempo of his CLL. There's also one test you haven't mentioned, termed IGHV mutation status, that provides an even better indication of the likely time to first treatment, if your husband eventually needs treatment, along with the probable length of remission. Actually, there's been such a massive advance in new treatments lately, we are still discovering how long that will be. Whatever you do, don't google for this, as you'll find way out of date information. You and your husband have access to information and guidance here that will help him live very well with CLL and stand a very good chance of living a normal life expectancy.
These are the higher priority pinned posts to read:-
Take your time to work through them. It's likely that your husband may not need treatment for many years, so catching CLL early gives you plenty of time to make any changes to your circumstances that you might consider worthwhile. Getting up to date with non-live vaccinations would be the most beneficial.
By the way, your husband is most welcome to join with his own account, but if he would prefer to leave the research to you, rest assured that you have plenty of company in that regard. Also, sometimes living with CLL can be tougher for the partner than the person with CLL. You need support too and you'll also find that here.
Thank you! We have just a regular oncologist so far, but my research shows a great cancer center at Mayo Clinic in MN. We just moved to Iowa from Texas, so I have lots of research to do! Husband will focus on working and staying healthy as possible and I will be the researcher! The doctor did not give any details on flow results and has not called about FISH test. It’s been a week. Nothing on my husbands portal yet either. Next appt is July 12. Then we will let oncologist know we are going to see a specialist. Thanks again for all the great info!
You've done very well finding the Mayo Clinic. They have a long history of CLL research. Seeing a CLL specialist can add add a few more years life expectancy.
Thank you! The nurse just emailed my husband and said the test were not ready yet. She said they will go over all the results at our appointment Friday. It's going to be a longggg week.
Welcome but sorry you had to join. As a former athlete, I can verify one "seems healthy" while early CLL cells are starting to build up in our blood. I say "starting to build", because what basically is going on is, for whatever reason (stress, early or late carcinogen exposure, UV or other radiation, various possibilities) our body is unable to repair parts of our DNA, and these defective B-cell lymphocytes are made. And then somehow our body does not recognize them as defective and destroy them like it's supposed to. The FISH is to determine some of the DNA damage (there are other tests for other damage, but FISH is the "main one"). Most of the defects involve these defective cells not turning over/dying normally, like skin cells die/we grow new ones, or red blood cells, or others. So one starts to see this "rise" in lymphocyte numbers.
As others have commented, one may or may not ever need treatment. These defective lymphocytes eventually do die off, and if the growth of the defective ones is slow enough, a steady state may be reached where other blood components and organs aren't affected drastically. So some people may never need treatment, unless their bone marrow is eventually infiltrated by CLL so other cells made in the bone marrow (platelets, red blood cells) or serum proteins/other organs are affected. Sometimes lymph nodes grow (they might get clogged with CLL cells) and start pressing on nerves, or interfere with sinus drainage, or cause GI or breathing problems, and that could trigger a need to treat. Mainly, we need to recognize our immune system is now somewhat "impaired" and act accordingly. Similar to a diabetes diagnosis, some who get told they have diabetes can manage it by diet, exercise, and lifestyle changes. Some with diabetes can't manage it just by those changes, and need medication, which often but not always controls it. Sometimes diabetes affects other organ systems, and has various side effects. Many people with diabetes don't die from it, they die of other causes, but it's possible that the diabetes can contribute to, say, a leg infection that gets into the blood, or kidney problem, that may be a stated "cause of death". CLL is very similar, except instead of kidney problems and leg ulcers, our "weak spot" tends to be our lungs, or anemia or low platelets or immune system components. So while this is technically classified a "leukemia", a cancer, because of the "lymphocytes that grow instead of dying on schedule", it is NOT like typical cancers where one must always treat it urgently.
So while you both no doubt have extreme anxiety over this diagnosis, please try to wrap your head around the concept of a "cancer" that isn't likely to be fatal in the near future, or need urgent treatment. I think if he had a "more severe, needs to be treated soon" type like mine, there would be symptoms and he would feel unwell. If you tap on the various names who have responded, many of us have shared/documented our stories on this journey in our profile, and you will see that even if told FISH or other tests/symptoms seem "bad", we are still around and kicking, leading relatively normal lives. But like a diabetic who learns they have to watch what they eat to control their diabetes, we with CLL simply adjust to living with an impaired immune system. This is a gross oversimplification, of course, but the analogy is valid.
To show 2 extremes, I became ill in my early 50's with what I though was a recurring tooth infection, got bloodwork, and was in an oncologist office within the week because my "bloodwork appeared bad". I am thankful it was CLL and not an *acute* leukemia that *would be* immediately life-threatening and *would* need treatment urgently. I got a *chronic* diagnosis! But I felt sick and looked at treatment options quickly. I've had treatments that worked, some that failed, a decent 5 year remission, and am now in a treatment that's working well. It's looking like my aggressive, "bad FISH result" variant is getting controlled to where I may once again get a nice remission period (we go off the meds in remission). At the time of my diagnosis in 2011, I was told I had a 50% chance of dying within 3-5 years based on the FISH. Well, I am not dead, and have only been hospitalized for anything CLL related once, at the start of my current treatment "as a precaution"/safety measure "just in case" the start of treatment killed CLL so quickly it affected other organs. Which I am glad I did, because I needed it; a projected 2 nights turned into 4, and I was never severely ill just kept there for supportive measures/treated the side effects until everything went back to normal.
A neighbor with CLL, decades older than I, got the diagnosis through routine bloodwork and he felt fine. He has gone mmmm 7-8 years without treatment. He says the main problem is, he can no longer do the 3-4 hour weight training sessions and similar exertion, although some of that is of course due to being over 70 at diagnosis! His lymphocytes rose the past few years, he's really stressed out about some local political land issues, and recently developed low platelets, which he is now being treated for. He is considering a bone marrow biopsy to assess his bone marrow and if he should consider starting treatment. His hem-onc is wanting to get his platelets normalized before starting anything, because our various treatments can cause a decrease in platelets. So even though his CLL may finally be affecting him to needing treatment, it's not an urgent, life threatening thing going on that *must* be attended to quickly.
Thank you! It helps to read about people who experienced undesirable FISH test result. We will be on the edge until the appointment. Reading all the real life experiences has proven to be super therapeutic for us!
A CLL diagnosis is simply what it is - a diagnosis. What follows may be either an indolent or active condition. Some people never experience symptoms or undergo treatment. I have been one of those fortunates for the past 16 years. There are others here who have experienced 20+ years symptom free.
There are prognostic indicator tests, but they are not absolute in their prognostication. May you husband live a CLL life with nothing more than numbers on paper....... 🙂
Puglove55, I'm so glad you connected with us. The news here is positive news of ongoing research in CLL treatments. Bring all your questions to this forum. My haematologist is impressed with the knowledge I learn here, some even new to him! 🙂Sandra
Between those 2 and this message board, you will have tons of accurate info. Also, please be assured that the optimistic tone on this message board is evidence-based and is not wishful thinking or a positive attitude. CLL may not be curable, but it is very treatable (if it ever needs treatment) and that is a reason to feel pretty good about the future.
I am also 55 years old and have no complaints. There are quite a few like your husband and me, so it is not unusual.
Take a deep breath and try to familiarize yourself with the disease in general at the beginning. Over time, you will probably show more interest.
People here are very responsive and everyone helps in whatever way they can. As you have already been told, the disease is insidious in nature and course, so there is an endless library of cases in this forum that will enrich your knowledge in the future.
I wish you a slow progress and fewer problems.
Although I'm new here, I'd be happy if I could help with anything.
17,000 is not alarming. I'v been to 156,000 and back, now stable within normal parameters.
The main thing at this point is to get a good oncologist, not somebody near the end of their career.
As others point out, it's quite possible this may not require treatment. My former onocologist said he had a guy who had been running a 200,000 WBC for years and never had symptoms or needed treatment.
Just get an oncologist with CLL experience and read up on the condition.
I was at 215,000 down to 207,000 now 187,000 wbc can fluctuate up and down. I wish it was alt less but it is what it is. (No treatment yet) diagnosed 2017. Hoping for no treatment for many more years.
Hi Puglove, I was diagnosed at 54. On 4 July, I celebrated my 75th birthday. There are no averages really as CLL is a very individual disease. It was 7 years before I needed treatment. Back then it was FCR but there are so many better options now. I wish your husband a long life and may he stay as healthy as possible for as long as possible.
Thank you. There was a time that I never thought I’d make 70, let alone 75! I’ve now made 80 my next goal. I’ve had 5 birthdays in the States over the years because you guys know how to throw a real party! Hoping to get at least one more up your way. I see you joined the forum on 4 July so we’re practically soul mates!
I’ve had FCR for 2 cycles (11 doses in total), Rituximab multiple times and I’ve been taking Venetoclax since April 2018 — 200mg daily since November 2018. Clinically in remission since that date.
I was diagnosed 14 years ago, have had no symptoms until now and not on treatment yet!It is a very strange condition to understand but I am learning to live with it.
Stay on this forum and you will learn a lot and don't forget a lot of it may not apply to your husband as everyone seems to have very different journeys.
CLL is so varied and is very individual. I have never had a raised white count at any of my annual routine blood tests and was only diagnosedagee 56 on my routine medical in Nov 2020. I had no symptoms apart from I lost 8lb during the summer, which I thought was due to retiring in the April to be a full time dad to my 4 and 2 Yr olds. I had a HB of 80 and platelets of 50. Confirmed stage 4, straight to treatment and have been in remission for a year. So have my advice is check your bloods regularly, 3 monthly at least, I am on monthly checks.
Please also know that there is usually a good amount of time in ‘watch and wait’ - years not months - if treatment is needed. Watch and wait is stressful as your blood count climbs and you see treatment around every corner only to be sent home and told to come back in three or six months. 17,000 wbc is still likely to be years off treatment. It will depend, of course, on his own particular CLL when the FISH test comes back, but I wish I’d known I would have five years without any treatment and been able to ‘enjoy’ it more. And, as others have said, at 55 there are many treatments now for CLL that mean your husband is likely to be able to live with the condition mostly unhindered. A normal life! At times he will have to be careful, especially when it comes to infections, but care is generally good and a cold - or even Covid - does not equal disaster.
We both got hit with Covid in Feb. We are vaxxed, but I am surprised in retrospect, how my husband bounced back so quick. Sometimes I wonder if Covid triggered an underlying Leukemia. But who knows. Thanks for the reply!
My hubby is the one with CLL. He has the SLL form of this disease and as such has never had blood counts that fall outside of "normal". His watch and wait lasted 6 years. We did not find it stressful after the initial shock and lived just as always until about 6 mos before treatment with very little symptoms. Only after swollen lymph nodes became bothersome did he start O+V , which so far has been extremely manageable. This cancer and this "chemo" is nothing like the pictures that come to mind. Take a deep breath, the odds are very much on your side.
Thank you! I can feel the anxiety from my husband, but he is trying to put on a brave face. I told him to express his feelings more. I think after FISH test results, he will breath a bit easier. But also I learned from this forum, that a bad FISH is not a death sentence. Thank goodness
Not knowing (for me) is the hardest! And that is why I am talking with you instead of my hubby being here! Generally, nothing here is a death sentence. As they say. .. the patient dies with the disease and not from it. Each phase, diagnosis, W&W, symptoms, treatment....is a new set of questions and anxiety...but this is such a good group with answers and kindness and resources . We are with you!
May I say as a wife also of a CLL husband this site is a wealth of information. I want to add if I may that O and V which are a combination that has worked so well for my husband are not "chemo" but immunotherapies, so you can take the picture of chemo with it's scary side effects out of the picture. I also believe with your husband's young age at diagnosis that there will be a cure for CLL. My husband who was 76 when diagnosed 7 year ago and now 83 has required limited treatment in the past 5 years and is now with the combination of the Obinutuzumab (Gazyva) and Venclexta in what appears to be a long remission if not "cure" as he has no evidence of CLL at all in his blood or marrow. My husband never had the high white blood cell counts that many if not most of other CLLers have but due to his lack of immunity and susceptibility to infections has required treatments off and on sometimes going years in between. Wishing you all the best.
There is excellent information available to help end the confusion. Take a look at the CLL Society, Leukemia and Lymphoma Society, Lymphoma Research Foundation and PatientPower. I was diagnosed 13 months ago. Information provided by these excellent organizations has been very helpful to me.
We had a similar experience, in that my husband was diagnosed with CLL when he was having prostate cancer surgery and they took a biopsy of his lymph nodes at age 69. He has always been healthy and active and the cancer diagnosis really knocked us for a loop. The prostate cancer was a “take it out”and be done with it kind of thing. But you can’t do that with blood cancers, so it’s understandable that you would be worried and scared. My husband was at stage 0, with a similar WBC count to your husband’s. We watched and waited for about eleven years without any symptoms! Even though his WBC count went up to 150 at times, he was otherwise well, and the doctor said as long as he felt good, and they didn’t see other signs of change, we could monitor it. We went twice a year, but learned to expect the positive. The past two years he has been more symptomatic - tiredness, swollen spleen, loss of appetite, miscellaneous other things that were not severe or life impacting, but required being monitored more closely throughout the pandemic. The doctor told us about three months ago that it was time for treatment. Thankfully, there are many new developments in CLL treatment area. I think you have every reason to be hopeful! We’ve had thirteen good years and now we have hope of remission and restarting the clock after treatment due to new developments.
You can relax since this is just the beginning of the walk down a very long road. My diagnosis in March 2018 started with my WBC close to your husband's current one at 15,000. I likely had the illness building in me for about four years prior to that, but they use a number of 5,000 Monoclonal B Cells to "Officially Diagnose CLL". The Monoclonal B Cells are immature White Cells that never develop into true White Cell function" Those cells don't attack us other cancer cells due, but they tend not to die when cells should die. They live so long that they keep increasing the total WBC and Lymphocyte counts, and this ultimately begins to crowd out (due to limited space in the blood) the Red Blood Cells and Platelets.
This usually takes a very long time to happen, so your Husband will likely start seeing the Oncologist/Hematologist every six months for blood work and a physical check up. His immune system numbers will go down regularly, so he will be more susceptible to infections. He will likely begin to feel more fatigue as time goes on. He probably will start to sweat more at night.
Other than those things I have lived a pretty normal life.
Thank you! There was a time about two years ago, where my husband spiked a high fever and sweat like crazy! We were in Italy on vacation. He was down for two days, then pushed though. I do wonder if that was the beginning.
The path for CLL progression is very different for different folks. The FISH will provide the doctors a good perspective on what to expect in years to come. I was diagnosed in 2004 when I was 52 and still in W&W 18 years later. My particular approach was to clean up my eating habits, lots of vegetables mostly organic, some fruits, grass fed meat and free range chickens, also reduced my carbs, eliminated processed sugar and try to walk every day I can… just turned 70… So my advice is to get a good CLL doctor for your husband and don’t despair because this diagnosis can mess up with your head at the beginning… Also there were no good treatment options when I was diagnosed, today it’s a very different landscape with much less toxic treatments that result in deep remissions… And remember the “C” in CLL stands for “Chronic” not acute… good luck 🙏
Hi Puglove55I know how you feel as my husband was diagnosed 2 years ago (suspected 4 but they attributed high wbc to pericarditis once.
I am sending you both virtual hugs. Extremely similar story, I am 51, hubby 64. Routine bloodwork, very healthy, whole thing. I was a mess, we both were. Then he said, "have we ever been through anything we haven't handled" & reminded me it's "how" we handle things that make a difference since none of us are guaranteed healthy "vessels".
But, we found this forum and an amazing specialist. Life has been good and I have learned more about how "not to worry" from this AMAZING, DEDICATED, HONEST, KNOWLEDGEABLE, COMPASSIONATE group of folks on this forum. It is priceless. I don't google things anymore, I come here. I read & learn & share & question. I can't help much but when I can, I do.
My husband gets bloodwork every 6 mnths. We track the data, changed eating habits. I keep any changes of his health in my phone calendar for easy reference (even if it's minor). We decided not to share w/any family or friends. I look back & am glad I changed my mind set from "what if" to "what is". I learned mindfulness & for someone w/anxiety, it was beyond challenging. Still is. *Sorry it's long but in case it helps, I share.
Amazing treatments if needed & you will read so much here that will be offered. It takes time to absorb, it took my husband time to be able to discuss it, but now, he asks about the forum & listens to me read posts!
I wish you both peace of mind, health & happiness. If you ever wish to message me, feel free.
The first thing I would say is to take a deep breath. The results of the fish test will determine which gene is the one that mutated. That will give you a better idea of the direction of the disease. I didn’t have any symptoms and felt fine for 10 years. I developed anemia which took 9 months to cure and that was 3 years ago and I feel fine again. There are great meds that will help him manage CLL when he needs it. He may be on watch and wait for years and that is a good thing. My advice, besides going to a specialist for a second opinion is to get copies of every test done including blood work and keep a file. I include what doctor I saw when and what they said in my file-like a journal. You also want to do everything you can to stay away from Covid. Good luck
You are getting excellent responses on this forum. It will take time to familiarize yourself with the terminology and understand the basics of how CLL/SLL treatment usually unfolds and standard treatment protocols. If hubby is feeling well, you probably have time for the steep learning curve. Educating yourself through ACCURATE SOURCES (not the web in general) will be most helpful in reining in anxiety. This forum and CLLSociety.org are excellent places to seek current, accurate information and ask questions. All the best to you!
When the doctor tells someone they have cancer the whole world falls in ….I felt exactly he same when I was diagnosed in 2009……BUT …..CLL is a chronic cancer , I have worked normally up to 2020 due to the pandemic. I have passed my full stringent medical for my work role each year. When the doctor tells you there going to watch and wait it will have no effect on the outcome. Medication has advanced so much that I’m on Acalabrutinib 2 tablets per day the reduce the white blood cell count to normal without any appreciable side effects. The only thing to be aware of it that because CLL effects the immune system take real extra care with regards Covid.I have found the support of members of this group so helpful to alley fears and concerns. Your not alone
Chronic Lymphocytic Leukemia is a highly heterogeneous disease meaning it manifests differently in each patient. The good news: some never need treatment. The bad news: there isn't yet a cure just treatments some of which must be taken for life.
There are some great resources I'd look into the Leukemia and Lymphoma Society lls.org, the CLL Society cllsociety.org which has an expert second opinion program if you are not seeing a CLL expert on their list.
I just read this book: I think you might like this book – "CLL (Chronic Lymphocytic Leukemia) : A survival guide for patients" by Dr. Bhratri Bhushan.
I too was diagnosed at 55. I’m 70 now. No symptoms till approx. 2 1/2 years ago. ( Platlets crashed) …went thru therapy on Ventoclax for a year. It worked and I’m in full remission. The drugs to fight this are getting better every year. Hang in there. There’s a lot worse cancers than CLL.
I have met some that live with no symptoms. Mine was diagnosed in 2017 and now at 81 I am severely hampered by exhaustion constantly. But, my CLL is under control so there are other issues causing symptoms - maybe old age, pancreas, liver? Eveyone is on there own path. Read, talk, research to help yourself to feel more on top of things. I get upset and the oncologist has a way of batting away my questions - "Talk to your primary" he tells me....
Your husband is young and strong and it is your job to keep him alive and well. Married men live the longest because they have a woman pumping life into them every day. Blessings.
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CLL and Genetics....
I’m new here…
Stage 1/2 CLL and no follow-up visits?
New Diagnosis :what does all this blood work mean? 
