I received my Flow results this morning and saw “Abnormal CD5+ B-cell population ( 88.9% of leukocytes) with a B-cell chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) immunophenotype.” Oncologist just confirmed CLL. With the exception of my WBC (75) and lymphocytes being high, everything else is normal.
I am only 54. I have young kids. I am scared and sad and angry. I am still waiting for Fish results from my Bay Area academic hospital. Here is my question. Do I want to know my FISH results? I am scared that knowing the information about my abnormal chromosomes might make Wait and Worry intolerable. I would appreciate any advice or encouragement.
hi EastBayDad, this was me 6 years ago when I was diagnosed with cll. I’m not saying by no means that it’s easy. We all go through allot mentally when diagnosed with cancer. Within time you will feel better and move on with your life. It’s certainly a shock to us all. We never think something like this will happen to us but honestly it can happen to anybody, even the healthiest people out there. Like Jammin said cll is not what it used to be and it’s a very manageable disease like diabetes. Make sure you find a cll specialist to get the best care. Here you will learn allot about cll🙂. You found a very supportive group here. We all care.
You do want to have as much information as possible. If you should turn out to have a form of CLL that traditionally was nearly untreatable, take heart! There are many new drugs in the pipeline that have helped people to live well and much longer, too. When I was diagnosed, these drugs were not available. So I made a desperate play for time by trying other healing modalities, and was lucky. I had just turned 49 at the time of my diagnosis, so I can well relate to the upset you feel.
In the mean time, if you can, get a copy Paul Pitchford's book, Healing with Whole Foods, and see if you can imagine yourself trying the anti-cancer diet that he describes for a month and seeing if it helps. If it does, keep going. When I did this, my white cell count dropped almost in half in a short time. I was given a poor prognosis (I'm unmutated) 16 years ago. I have since had several difficult infections, but have gotten better and better instead of worse and worse. I've lived to see my children graduate and am a grandmother now. It's quite a process. It's upsetting, escpecially at first or when you find yourself sick or wondering whether it is safe to go to work. Don't give up!
(Ideas: Drink 5 cups of green tea (sencha--cool the water to 170 and brew 10 minutes) every morning and have some turmeric in your meals or in a cup of warm milk at bedtime if you want to try what I did. I order the green tea from Japan (yuuki-cha dot com), and if you drink, stick to red wine, and not much, maybe a glass. Find out about quality oils, reduce sugar and refined foods, eliminate or greatly reduce processed meats. The green tea and turmeric contain substances that kill CLL and other cancer cells. But gradually, in the amounts that I suggested, not all at once. So you don't feel awful. Also, get a radiation meter, one that measures microwaves and radiowaves near the microwave spectrum. There are many studies which show that these energies can cause harm. If you find yourself living in a hot zone, you can make an effort to learn about ways to shield yourself from these energies. When I did this, my health improved a great deal.)
It has taken me 16 years but now I am almost well. At my last checkup, my oncologist asked me if I wanted him to continue to monitor me! (I said: Of course! I still worry, but much less than I used to.)
It's a journey, you will learn a lot, good luck, live long and prosper!
I apologize ahead of time if my response is taken the wrong way. I applaud you for being a healthy eater but when someone is first diagnosed with cancer they are dealing with so many thoughts and feelings. Reading your post makes it seem that all you have to do is follow your dietary regiment and you will be fine. I feel this gives false hope or even slow a person down from getting the testing an medical advise they are in the process of getting. Again I am happy for you but it is the time for EastBayDad to come to grips with his diagnosis and follow his doctors lead and advice. Let him learn from all the wonderful people on this board and then be able to make decisions about CLL.
When I first got diagnosed I did not know about this site. And I called my cousin, who had always been blunt, but read everything and knew a lot.
She asked: What are you going to do, go on a macrobiotic diet or something?
I said: I don't know, that's kind of a big lifestyle change.
She replied: Well, I'd call chemo and dying kind of a big lifestyle change...which do you want?
I was reeling and upset. But what she asked made sense to me. So almost immediately I started giving up many of the foods that my cancer had been relying on for strength and growth. I emphasized foods in my diet that would help my normal cells start to recover control.
This cousin probably saved my life. I listened to her and embarked on a dietary change that really was hard, and made me cry sometimes, and which offended some people, but in the end, with my husband's support, I was able to recover my health.
Just trying to pass on some ideas that helped me. Not everyone will be interested. And this process may not help everyone, but what is the harm in trying for one month to see if it can help you? In the beginning, we have a lot of blood drawn. I kept track of my results. Right away my numbers stopped climbing and started slipping lower. It was very encouraging since I had been given such terrible news, too. I had such swollen lymph nodes, and was so fatigued. The diet and weight loss initially worsened my fatigue, but I was able to keep working. I slowly got better. I had a little more control over what was possible for me, and that felt good. Just trying to help here, not telling anyone what they have to do. Thank you for caring.
I always listened to and discussed what I was doing with my oncologist, who did not discourage me in any way and was a good enough scientist to be curious about what I was doing. She always listened to me and I listened to her. Eventually her nurse wrote down what I was doing and it is in my chart. My bi-weekly blood draws moved to monthly, to semi monthly, to quarterly, to every six months. I never cut ties with my doctor. She is one of my heros.
Seems as if you are content with your decision, but if it were I, I would think more about mdsp7's input. I had a similar mindset as you when I was diagnosed but then I started by reading Glenn Sabin's CLL book "N of 1" and radically changed my diet and supplementation. I then implemented a Green Tea (EGCG) regime as well (watching my liver enzymes) and went with a mostly Mediterranean based diet with just a tad of meat. Gave up booze, increased my exercise and maintained a healthy weight. I then attacked my 5.6 A1C and reduced it to 4.9. I also attacked my cholesterol/LDL which was 222/135 and reduced that to 116/64 in my last test. I'm now working on vitamin deficiencies (you need to test) and stomach absorption issues (you also need to test) so that micro-nutrients are better taken in. To my mind, it was cancer and time to get tough. While it may be coincidence, all my markers, including me CLL ones, have improved since my diagnosis 15 months ago.,,,,So by all means, listen to your CLL doctor about treatment options but, in the meanwhile, start working on your overall health and get your other blood markers into ranges (A1C, Cholesterol, B Vitamins, etc). You will be that much more resilient should you need treatment......You may need a nutrition specialist to help you on this journey if you don't enjoy doing biology deep dives
I've had a 15 month head start on you which I needed to get over some food cravings and the psychological "happiness" I believe I derived from certain foods. But in short, when my doctor told me that she wanted to put me on statins for my cholesterol, I challenged her that I could get them down. And I lowered by more than 110 points in 6 months (70 points in 3 months....I just rechecked my Quest data) by eating very little saturated fat in the forms of animal meat and eliminating all dairy. I kept my total daily saturated fat intake/day to under 15 grams a day which meant very little saturated fat (I stuck mostly to seafood, an occasional egg and lots of beans for protein). I also made sure I was getting over 60g+ of fiber a day. I do this by reading labels for soluble fiber and going for sandwich wraps, etc with 15g+ fiber, the beans mentioned above, adding a TBSP of psyllium/chia seeds to my salads and learning to like and cook vegetables so that I would eat them often. Soluble fiber essentially wicks cholesterol out of your body and down the toilet. For me, lowering my cholesterol also had the benefit of helping my CLL because I believe the school of thought that CLL is a "lipid feeder". I know that this CLL/LIPID idea is not embraced by everyone but there is a school of CLL science that believes it to be, on the whole, true.
At first, I was crushed by the thought of eating in such a changed way but now my diet is second nature abet a bit more boring. And as it becomes second hand, I try to make more of my carbs in the form of vegetable fiber, rather than grains as it is better for your gut health and the "good guys" who live there. Food for thought.....and, as always, your mileage may vary.
Thank you, that is really inspiring and helpful. I will act on your advice. I had not heard about Sabin's book, N of 1, and just ordered it. It looks like a fascinating and important story. Thank you! After 16 years, of being pretty disciplined and careful, I have found myself growing a little complacent about having become both a little fat and a little out of shape, and this has been worrying me. From this moment I will pay attention to increasing fiber, quit the toast and butter snacks, get moving, and eat my beans and vegetables. I'm sure I'll learn a lot from the book, too. Many thanks!!
Your story sounds like mine, "After 16 years, of being pretty disciplined and careful, I have found myself growing more complacent and getting heavier and a little out of shape"........Yeah, I thought I was fit because I was relatively lean compared to my 50-60 yr old contemporaries, but, lo and behold, when I was diagnosed with CLL, my various blood and health markers were all going in the wrong direction. For me, it was time time to stop just blaming it all on aging.
Best of luck, my friend, and please reach out to me if you have any questions.
I finished the book, N of 1 in one sitting (audible version which was immediately available. I ordered the hard copy, too.) Wow! It describes a very brave person who was determined to raise his family and live and with discipline and a fierce strong will managed to cure himself of CLL. The things he tried were familiar to me, because I tried many of them, too, and continue to do so, with good results. I find it sad that, based on the number of likes that you and I get, few people who come to this site seem to believe this kind of healing is possible for them. Courage, let's have some! We don't write this for the likes, but because we know the advice is sound because we write from our own hard won experience. I'm so sad to be so ineffective at helping others. But I am happy to be doing so well for so long. I hope your path continues to make you feel better and better, and thank you again for the great resources and ideas. Again, I was starting to be complacent but I'm back on the trail to even better health. I know now that even better remission is possible, I don't think I have the drive or stamina that Glenn Sabin has, but we are all unique and I will do what I can, with a little more determination, to work toward that goal of eliminating this cancer or at least some of its troublesome symptoms more fully. Thanks again. Onwards!
diagnosed 8yrs ago - erroneously took comfort that is was an ‘old man’s cancer’ & I was 52. Needed treatment within 5yrs have been in remission since - my youngest is 20yrs old ( now)
As others have said, you aren't alone. I was diagnosed a couple of months ago. I was terrified. I have since calmed down some, but still have my days. I think you do want your FISH results because I truly believe information is power. Also, you might get "good" results and find out that you have markers that will indicate a less severe form of CLL. I'm sorry you are going through this. We've all been there.
EastBayDad, I was 51 when diagnosed 27 years ago, and at the time was told that I likely had 2 good years left. I made a career decision based on that that prognosis, which it turns out I wouldn't have needed to make. So please don't make that mistake.
Yes it is frightening to get a cancer diagnosis, but as others have said, try to relax a little and become an informed advocate for yourself. I'd encourage you to access your test results as they be come available, and partner with your oncologist, at some point perhaps consulting with a CLL specialist.
Well clladytime, I think that it was more a case of pathologists making a wrong call. Upon diagnosis the local pathologist reported that my CLL cells looked like an aggressive form of CLL. My cells were sent across the country to another pathology lab and the results came back with the same prognosis. That was before any FISH or IGHV testing. It turns out that I'm 7.2 % IVHG mutated, well above the 2% that is generally thought to be a positive prognostic marker. So, no real formula for success. You can look at my profile to see how many treatments I've had in the past 27 yr....lots. Thank goodness for new drug discoveries!
Welcome to our community! If you haven't yet found our pinned post section, check it out, because there's lots of accumulated community wisdom and evidence based material there to guide you through the process of living long and well with CLL. healthunlocked.com/cllsuppo...
Some of us don't want to know our prognostic markers. In most countries (those with universal health care systems), they aren't tested until treatment is needed, because they can change over time and historically were only needed to inform treatment choices. I'd suggest that knowing them in your circumstances makes a great deal of sense, because this will help you plan on how to best tackle the achievable challenge of being there for any grandchildren you may have. The test you are yet to have, which has the most influence on your likely time to treatment and remission length from treatments is your IGHV mutation status. If you are mutated IGHV, you may never need treatment. I was diagnosed in stage 4, when just a bit younger than you, back in 2009 and commenced my first, very successful treatment 4 years ago.
Hey EastBayDad, sorry to hear about your diagnosis. You are so brave to come on here and write so quickly after being diagnosed. It takes a lot of courage to "utter" the words...we have all been there. At first a total shock, I felt frightened, thinking your life is over, after that it was denial for me, then anger, self pity, it's a roller coaster of emotions...I was diagnosed almost 5 years ago, I was 7 months pregnant...I was on w&w for three years, treatment for a year and now 7 months post treatment, in complete remission. Life is good, I appreciate little things more, might sound like a cliché but it's just a fact. You will have time to learn about your cancer and get calmer and kind of used to it. This is just the beginning of what might be a very very long journey. Stay on here, we will try to support you as much as we can. There are times you don't want to burden your loved ones and also times that they will not understand...we are all here. You will be fine ❤️
If you lock your post it will remain private to our community and not be on the open internet.
You will go through a rollercoaster of emotions for a while and are allowed to be ticked off.
But if I can plant the seed…
As the months and years go by try to remind yourself it could be way worse. The likelihood is that you have many years ahead of you. There are many people who are diagnosed with other cancers that are told they have months to live. Their cancers can cause them unbelievable physical and mental agony.
I’m in my thirties and am wrapping up my first therapy. Every time I go to the clinic I am reminded of how lucky I am. Even during hospitalizations I had over the past year I was reminded of how fortunate I am to have not been diagnosed with something more aggressive. It is weird to feel and look like a relatively healthy dude in these settings.
There is a very good chance you will be managing your CLL like a chronic disease when and if you ever need treatment. I have noticed some people stop posting here after a couple years since they realize their CLL is just something not to worry too much about yet.
The most important thing you can do for yourself is to try to mitigate infections. Getting covid or the flu down the road might not be a breeze. Wash your hands.
I was diagnosed 6.3 years ago at age 55. My markers aren’t the best but I’m still here enjoying a normal life. While CLL isn’t the best news there are many other blood cancer diagnoses that are much, much worse. With the benefit of time you will find that your situation isn’t nearly as bad as what you perceive it to be. Please inquire about your FISH results. Knowledge is power with CLL and you will learn the novel agents are extremely effective against even the worst genetic markers. Stay positive as you work through the shock of your diagnosis. You have many good days ahead.
You've already received lots of helpful information so I won't overload you with too much more except to alert you to our pinned post about vaccinations for those with CLL: healthunlocked.com/cllsuppo...
In response to your specific question about test results, I didn't get to know some things about my particular type of CLL for some time after diagnosis. I did get my FISH results but I had to wait for my IGHV and TP53 status because those tests weren't available to me in Australia for some time after I was diagnosed.
I was fortunate to be able to access them before I had to make any decisions about treatment. In the end, they showed I was in a higher risk category but now, over four years into my continuous treatment, my CLL is still under control
Take the time you need to get your head around your diagnosis. You've found a very supportive community here, including some others who have young families, and we'll be here for any further questions or experiences about living with CLL you may want to share in the future.
Feel for ya EastBayDad n the sudden news “You have Cancer” are 3 words we here have all been shocked with. But I’ll say this .. you’ve joined the right forum and the more you read here the more you’ll learn that’s this cancer (in most cases) is highly treatable n beatable, assuming that you’ll need treatment someday, cus … about a 1/4 to 1/3 of us CLLers won’t even need treatment!
And… even better news is the treatments (again should you need em) are rapidly getting better n better, even whispers of the good 4 letter word C-U-R-E might someday be discovered.
Agree with others to “yes” do find out your FISH results. Knowledge of your CLL situation and markers will unlocked the unknown. It’ll give you a step forward towards better dealing with your CLL.
One last piece of advice I found valuable here early on was to read “pinned posts” by cajunjeff titled “CLL for Dummies”. Very informative plus an awesome read they all are. There’s info/explanation about FISH reports that might help you per your post inquiry.
This sounds so familiar! Please don't panic. I was in the same boat in 2016 and it is going on 8 years (I was 52 when diagnosed) and I am still in W&W. I know I will need treatment at some point but, as others have said, this is a chronic condition so even if you have treatment early the current treatments will likely keep you chugging along. My WBC and ALC have been all over the place; rising steadily, then falling, then rising again a bit. It is a roller coaster but it is just in one section on my mind now. I get anxious with my blood tests and I hate revealing to people that I have CLL. Not everyone knows and I prefer it that way. They can't tell so I have only told certain people who matter. One thing: do tell your kids. Not sure how old they are but it is best for them to know now. If you leave it and they suspect something is wrong, they might freak when the truth comes out. I made that mistake. Check in here for ongoing support and answers to your questions . It helped me.
Thanks for all of the advice from everybody today. You made a very tough day easier. ✌️
First, breathe. All those feelings are valid. They may come in waves wherever you are in this process. Just breathe.
Knowledge is power, so understanding what’s happening is helpful. Especially, if you need treatment.
I was diagnosed at 54. Treatment started 2 weeks later. Those two weeks were worrisome. Anger. Lots of reflecting on my life and maybe guilt, too. I had so much to learn and was quickly overwhelmed. I needed to breathe. After treatment started, I realized I was consumed by the what ifs. Things I had no control of. I decided to bite off smaller bits of information to not be overwhelmed and focus more on living my life. It’s been helpful. It also allowed me to really get in tune with my body. Respecting those times of fatigue. Ensuring I was drinking the actual amount of water I should have. Permission to process what was happening. I found a level of peace.
This is a great platform. Ask questions. Read others journeys. Stay connected. Find joy.
I hope you find peace and success with a long watch and wait pathway. Best of luck to you and your family.
So sorry you have had to join this group, but you have come to the right place. Plenty of evidenced base information.
My husband was 55 when he was diagnosed and he will be 67 in a few weeks time. He has seen our sons grow up into fine young men.
We don’t get FISH at the outset in the UK and I am not sure he has ever had it despite several treatments. However I am a big advocate of getting any data which is available to you and starting to understand your blood counts.
In the years since he was diagnosed there have been massive developments in CLL. As others have said it is really becoming a chronic condition that you can live with for many years. Hopefully when the shock has worn off you will be able to get on with your life and enjoying your family,
welcome! I also live in the bay area and was diagnosed at 42 years old (2.5 years ago) I felt exactly like you. I went thru a grieving process then denial and then I realized I can lay down and deny it or get up and fight. My youngest just graduated high school last May. Now it’s about me and healing. I started with internal healing, forgiveness, prayer and I’m still
Wrestling with “healthy eating” but there’s a lot of good resources out there. If you’re on Facebook join the anti cancer thrivers group. Glen Sabin is the admin, he was diagnosed before the internet existed and researched the old school way via library books. Long story short, he healed himself of CLL despite all odds, he also wrote a book called “ n of 1. you’ll find a lot of support in that group as well. Take one day at a time. I’ll leave you with what my doctor in Oakland told me. You will die with it not from it. 💪🏽 find joy, surround yourself with those who make you happy, eliminate stress, find your peace and practice gratitude. It helps more than you know! You’ve got this!
My cousin's husband was diagnosed in his 40s with CLL some 17 years ago when the treatments were much cruder and more brutal than today, he is still in remission. My diagnosis was in 2019 and I just take two little tablets a day and am fine. Remember; you are far more likely to die with CLL rather than from it.
EastBayDad, you are now in the best "hands" of information for CLL. All share their stories with clear details of how they are doing. I was diagnosed back in 2020 and this group has saved me from worry and has given me ideas they successfully used to keep healthy. Yep, I may have CLL, but that's no excuse to not taking care of me. I exercise, eat better and absolutely look to have fun everyday. I'm 75 next month, last WBC was around 100, FISH 13q14, in watch and wait. Research is tremendous for us. Everyday new answers are discovered for our benefit. Any question you have is a good question. Any worry you have is valid(we've all had worries). Talk to this group and you will get answers and worries are put to rest! 🙂 Sandra
Hi there. I was diagnosed out of the blue, aged 55. In the UK cytogenetic analysis is not offered until just before treatment, so I followed my GP's advice and carried on as normal, apart from a haematology consultation twice a year. 18 years later I have been treated once, am in remission and am carrying on as normal, apart from taking care to minimise my exposure to infections.
I suggest you take it one step at a time. Get used to the idea that you have CLL, and use this group and the plethora of information here to get it all in proportion.
You will have regular blood cell counts and physical checkups, starting every three months I suspect. It's your clinical signs, plus how well your red blood cells and platelets hold up, that are going to determine when you need treatment.
Your FISH results could be of interest now, and some patients like to know them for planning purposes, but they really only come into play when different treatment options are being discussed. That could be years down the line, in which case FISH would have to be repeated anyway.
nothing I can add that others haven’t already said. I was diagnosed in 2016 but labs from 2011 show it was already brewing. I was 55 at the time. Fear, anxiety, depression, anger…. You name it. I had them all. Yes learn about all your markers. One third of people with CLL never need treatment and my specialist at MD Anderson told me at my last visit that it looks like I am one of those lucky ones. Wishing you the best in journey.
Tough break - but welcome to our community. I was diagnosed around 2 years ago and after a month in hospital fighting infections, had to go straight onto treatment. As of today, I wouldn't know there is anything wrong with me.
Hi EB Dad. I was diagnosed at 52 and just turned 72 yesterday. Life is beautiful. I take Ibrutinib daily and enjoy every minute of every day. I have CLL/SLL, Trisomy 12, unmutated, and have been able to pretty much do anything I want. HU has been of tremendous help. Knowledge is powerful. If you have any questions or need support, you have come to the right place. Welcome. Sally
Diagnosed at 36, now at 38, I have basically all the bad prognostic markers they tested for lol. In treatment now and doing great, my numbers went from sky high to normal in a few weeks. You got this.
Great comments by everyone but I will caution you against any claims that food, supplements, etc will cure your CLL or any cancer for that matter. . As a retired dietitian, my advice would be to follow a healthy diet. Seek out a registered dietition/nutritionist to provide some guidance. In addition, exercise as tolerated and take care of your mental health. All of these will help you feel better both physically and mentally. Cheers
Imua, thank you so very much for your professional warning;"I will caution you against any claims that food, supplements, etc will cure your CLL or any cancer for that matter."
Cancer is caused by DNA changes and foods, supplements, etc, can't reverse those DNA changes. The best we can realistically hope for in re-evaluating our lifestyle, is that the efforts we take to improve our health might assist our body to slow our CLL progression. The challenge with CLL, is that being a cancer of the immune system, CLL actively cripples our body's ability to fight cancer - hence our higher risk of secondary primary cancers - up to 8 times the normal rate for skin cancers. While there's around a 1% chance of a spontaneous remission occurring with CLL, all but one of the 30+ reports of spontaneous CLL remissions I've seen covered in case studies were in IGHV mutated folk - and that includes Glenn Sabin.
I introduced this two part post I wrote 6 years ago; "A common response to learning of our CLL diagnosis are efforts to improve our lifestyle health, primarily through changing our diet and perhaps our fitness." healthunlocked.com/cllsuppo...
I noted in part 2 that "..it is indisputable is that there is far, far more evidence of the benefits of exercise in helping our bodies than there is for diet, so much so that if exercise could be packaged as a pill, it would be immediately claimed as a major cancer treatment breakthrough and be prescribed to every cancer patient: healthunlocked.com/cllsuppo...
There's no denying that dietary changes can slow or even reverse the progression of some illnesses and improving our health and fitness DO provide worthwhile benefits: theconversation.com/we-all-... however, from the above, I hope that you now have some appreciation of how difficult the odds are of actually CURING CLL".
We also need to be aware that sites that promote dietary changes, primarily rely on anecdotal evidence - and that's very unreliable, even before it's possibly doctored: healthunlocked.com/cllsuppo... Several large studies have found that people who eschew proven treatments have significantly shorter life expectancies than those who follow specialist advice for their cancer. Without a CT scan and bone marrow biopsy, it's not easy to assess the total CLL tumour burden. It's fairly common to get to over 90% CLL bone marrow infiltration prior to needing treatment, but the fall off in blood cell production can eventually be precipitous. A change from 90 to 91% infiltration is a 10% reduction in blood cell production capacity. Delaying treatment increases the risks - more chance of infections, needing transfusions and so on.
Neil, I remember being diagnosed in 2008 when I had golf ball sized lymph nodes and intense fatigue and depression. My lymphocyte counts were high and climbing rapidly. I was given 5 months to 5 years of expected declining health before they would be forced to give me, an unmutated patient, palliative treatments. The poor prognosis made me sit bolt upright and look for ways to help myself finish raising my children. At that time, I was living on chocolate and coffee and bought vegetables but often failed to get them on the table. When I decided that the only thing I could do was make lifestyle changes and dietary changes, I embarked on the process, fully committed. The path I chose was arduous but I am still here, without treatment, without inflamed lymph nodes, with almost normal lymphocytes and all other blood cell counts in a good range. I healed myself, more or less, with support from the medical community when I developed the inevitable infections. I think it is a disservice to the community to classify testimonials such as mine --and the documented evidence presented by Glenn Sabin in N of 1 -- who travelled a path similar to my path-- as unreliable anecdotal evidence.
"The levels of evidence pyramid provides a way to visualize both the quality of evidence and the amount of evidence available. For example, systematic reviews are at the top of the pyramid, meaning they are both the highest level of evidence and the least common. As you go down the pyramid, the amount of evidence will increase as the quality of the evidence decreases."
You'll note that anecdotal evidence doesn't get a mention and Glenn Sabin's case study falls into the second lowest level of evidence. CLL provides an additional challenge in determining what interventions have the best chance of working, due to its heterogeneity. We know that people who fall into the prognostic group where most will never need treatment, can still find to their dismay that they need treatment soon after diagnosis. Conversely, some people who fall into the high risk group, like yourself, may never need treatment. The only way to reliably work out whether an intervention is beneficial, is to conduct a randomised controlled trial healthunlocked.com/cllsuppo...
Neil
Anecdotal evidence doesn't even appear in the levels of evidence pyramid
You know, when you give us your personal account of the pain you have suffered from your bout with Shingles, I believe that your testimony is truthful and comes from a heart-felt place, one in which you are trying to help others by encouraging that they get a Shingrix shot. When I read your descriptions of your pain, I don't think it would be respectful dismiss it as anecdotal and unreliable. Instead I think, you have learned a hard lesson, you offer your testimony because you want to help. I accepted your testimony as reasonable, I wanted to be well, I went out and got my Shingrix shots. It was a no brainer.
I've never advised anyone not to see their oncologist or take treatments if that is called for. But making our bodies more resilient by taking better care of them is, in my opinion at least as important as getting vaccinated against Shingles. And actually, even more important, I think. For if I had gotten my Shingles vaccines back in 2008, but done nothing else, data suggest that I would not be here now. I was very sick, there was no cure, people with my markers all fell off the survival graphs within 10 years, and I was getting sicker by the minute when I started following the program to which I credit my survival and which I have tried to some extent to share with this skeptical community. To my chagrin, there has been a lot of negative push-back and my experience seems to be easily dismissed by many. I know that my words are falling on deaf ears, for the most part. It makes me sad. But I hope I have helped at least one other person experience the unexpected healing and health that I have studied and fought for, and for which I remain very grateful. Best wishes to all of you. Maria
Maria, I appreciate that you are sharing your experiences to give hope to our members and to help them and that it too comes out of your care for others. I wholeheartedly agree that it's extremely important to do what we can in "making our bodies more resilient by taking better care of them". I encourage this too, because it can make a huge difference to our quality and hopefully quantity of life. Obviously you have done very well in beating the odds, but your wise encouragement and example of maintaining appointments with your oncologist specialist, highlights the difference between testimony and proof of effectiveness. Unfortunately, we know from what others have shared, that adhering to diets, supplements, fitness programs, etc., are unfortunately unlikely to stave off the need for eventual treatment. I was already very fit when I was diagnosed with CLL; for decades I had been cycling further each year than I travelled by car or public transport other than flying. After diagnosis, I improved my diet, maintained my fitness and took around 2 grams of EGCG per day (more poisoned my liver), along with turmeric, for a decade. Despite having good markers, (IGHV mutated, CD38 negative and no deletions reported in my FISH tests), I wouldn't be here today if it wasn't for my successful treatment with acalabrutinib, venetoclax and obinutuzumab. My testimonial regarding the effectiveness of those drugs is backed by lots of published results from clinical trials where participants are randomly assigned to different treatment arms and the results compared healthunlocked.com/cllsuppo...
I am glad you are here, and I appreciate the tone of this note. I am glad that you got the medicines that you needed when you needed them. You are a critically important member of our community, one so highly respected.
Let me reintroduce a touchy subject, but one which I think will be revealed to be important, eventually, once people finally agree to think rationally about it: I have sometimes mentioned cellphone and cell tower radiation in the context of changes I made to improve my CLL disease burden. I encourage you to think over your idea that microwaves only cause heating, and do not damage our cells. Have you studied lots of papers that prove this? I have seen the opposite. Since I started shielding my bed from the microwaves and radiowaves that were incident on it from the firehouse across the street from where I live, my lymphocyte counts dropped even more than they had with diet and exercise alone. I believe you said that you were an electrical engineer, and as such, knew that the effects of microwaves on the body were mild, just heating. An applied physicist I know told me the same thing, once, but later sought me out at a party at Caltech to express his concern about the proliferation of 5G technology. It turned out that a scientist he shared an office with had studied the effects of mm waves on animals, and the results were disturbing enough for my physicist friend to change his mind about the safety of these energies, and express his concern to me almost with panic in his voice. As one who studied biology, and who did research at a junior level in immunology, I have thought deeply about the interactions between molecules in living cells. My husband is a physicist and also understands a fair amount of biology, and he does not buy the "only heating" argument, either. Consider whether there really is evidence to support the claim that microwaves only cause heating, and not deeper trouble. Consider measuring the microwaves and shorter radiowaves in your environment and see if you can reduce your exposure, maybe by using a wired computer instead of wifi. After I did so, my cell counts dropped yet further. Anecdotal? Yes. But where are the studies being done? Not in my country, unfortunately.
I've been following the research into the effects of microwave radiation for over 4 decades. If there's an adverse effect, it's not marked, or we'd certainly know about it by now. The first Wi-Fi router was released in 1997 and nowadays very few homes and businesses are without them. Cars include Bluetooth microwave technology for hands free phone calls. We have SEER data for the incidence of new CLL cases (see attachment) going back to when mobile communications took off, back in the 1990s. The incidence of new CLL cases is actually slightly lower in recent times than was the case in 1992, despite people living longer and a massive increase in portable device communications via microwave technology over the last 30 years.
With respect to 5G technology, we also need to keep in mind that more cell towers actually can reduce, not increase radiation exposure. That's because transmitted power goes up with the square of distance. Most of the radiation comes from what you hold in your hand, not the cell tower. If you need 4 Watts of power from a phone to communicate with a cell phone tower say 2 kilometres away, you'll only need 1 Watt to communicate with one 1 kilometre away, a 75% reduction. Cell/mobile phones negotiate the minimum needed transmission power to extend battery life.
On balance, when considering risk vs reward, I would suggest that far, far more lives are saved through the use of microwave communications than are possibly lost through purported increases in cancer. That said, as you note, there are ways to reduce any suspected risk, even if the SEER data doesn't show an expected increase if there was a causative effect.
Neil
New cases of CLL in the USA over the last 30 years show no appreciable trend.
This is the final sentence in the abstract of the article I cite above.
"In conclusion, the overall cancer incidence was not increased as fast as previously feared with aging Americans; however, the incidences of myeloid leukemia and CLL significantly outpaced that of all cancers."
In which case we have a conundrum, because the authors of the paper you referenced, note in the Materials and Methods section, state that "The incidences and deaths of leukemia and other cancers in the U.S. from 1998 to 2018 were extracted from the annual Cancer Statistics data published by ACS. According to ACS, the U.S. population-based cancer incidence data were collected by SEER program since 1973 and the Centers for Disease Control and Prevention’s (CDC’s) National Program of Cancer Registries (NPCR) since 1995. These cancer incidence data were compiled and reported by the North American Association of Central Cancer Registries (NAACCR) since 1995 which have approached 100% coverage of the US population in the recent time period and were the source for the projected new cancer cases by ACS. The ACS projected cancer incidence data closely matched the final registered cases with about 10% variations."
Both sets of data show CLL deaths haven't changed much, but there's twice the number of cases per 100,00 reported in the ACS data. The incidence rates from both plots back in 1998 are about within 10%, but interestingly, the CLL death rates are about the same and static in both, but nearly four times as high in the ACS data - and the incidence rates are only about 50% higher. That doesn't make sense when compared to the much poorer survival rates for AML, which has a 5 year survival rate of 31.7% according to SEER data, compared to 88.0% for CLL. The diagnosis age profile is similar, with median age at diagnosis being 69 for AML and 70 for CLL. Given the SEER survival data note "Estimates of new cases and deaths for 2023 are projections made by the American Cancer Society (ACS), based on earlier reported data.", there appears to be something very wrong with the ACS CLL diagnosis data in your reference. Importantly, if exposure to microwave radiation accelerates CLL progression, why are the death rates in both reports fairly static? The improvements in CLL survival time from better treatments are yet to show in these data sets and are mostly due to better management.
Thanks for looking into this, AussieNeil. I'm not accustomed to searching these databases and need to look more carefully into what I am seeing. I don't have access to some of the databases since I lost my .edu email address and you seem to need to apply for permission to access some of the data. So I'm not sure if the Nature article is using that data or the publically available set which I can see. More to learn!
I too don't have detailed access for a deeper investigation into the source of that 2018 data in the report you referenced. My efforts in looking for more recent data, turned up the US Leukemia and Lymphoma Society's recent report, showing updated results to 2023 lls.org/facts-and-statistic... They use SEER data, but also reference ACS data.
Conveniently, ACS have also published an update this year, cancer.org/content/dam/canc... That report shows leukaemia death rates continuing to trend down since 1990, not increasing. They peaked around 1970 (Figure1, Males - 1930 to 2021, sorry, but female leukaemia data is not included in figure 2). While there's no specific reporting on CLL, it is the most common adult leukaemia/lymphoma. 1970 is about the time when the first breakthroughs in chemotherapy treatment were made, starting with leukaemia, due to the ease of monitoring changes with blood tests during treatment trials. "The Emperor of all Maladies" by Siddhartha Mukherjee is an excellent read in this regard. Wikipedia provides a quick overview en.wikipedia.org/wiki/The_E...
There has been an upward trend in CLL diagnoses reported in some papers, but that needs to be corrected for confounding factors, such as increases in life expectancy and more frequent blood testing. Quite a few members only found they had CLL after a blood test prior to surgery. MBL, the precursor to CLL, becomes increasingly common with age. Per healthline.com/health/cance...
MBL is very common and is seen in about 5–12% of people in the general population.
:
MBL becomes much more common with age. It’s very rare in people younger than 40 years old. It’s detected in more than 20% of people ages 70 years old and older and more than 75% of people ages 90 years old and older.
Life expectancy in the USA has increased from 75 in 1990 to 79 now. macrotrends.net/countries/U... It would have been 80 if not for COVID-19 pandemic deaths.
I am curious about the sudden jumps in CLL incidence around 2007 and 2015. Aren't new cell phone technologies periodically being rolled out at new frequencies? Do you know which cell technologies were in use or newly introduced during the periods where the line steeply increases? Around 2007, I thought I was healthy but was troubled when after returning from summer vacation, my blood suddenly began to feel carbonated. I was diagnosed in early 2008. When I put an RF shield around my bed in 2018, my blood finally stopped feeling so carbonated.
Microwave news carried a piece recently about how the US no longer looks into whether RF causes health effects.
In my opinion, this is terrible news. We need to look at these questions, not pretend everything is fine. Remember how long denial won the day in spite of the mountains of evidence showing that cigarettes caused cancer. Decades! People were addicted, and there was money to be made.
Sound familiar?
The black line shows CLL cases climbing steeply between 1998 and 2018.
Yes there's new technology making use of different frequencies from about 600MHz to 6,000MHz, with higher frequencies being used over time for the higher data rate they provide, but there's not a steep step function in adoption and you've the delay in any cancer development - perhaps decades in CLL from the MBL precursor. The other puzzle is that solar radiation is both much more energetic (but even here we need even more energetic UV radiation to cause cancer) and much higher powered. You get a couple of watts of microwave power emitted from a phone, of which only a part is absorbed by your body. Solar radiation is about 1,000 Watts/square meter at midday.
I've provided lots of references in my replies to this post, but if you can specifically say what you are after, I'll do what I can to provide you with something that will require less searching on your part.
I've always followed a fairly healthy diet, so the only difference with CLL is that sometimes I am not hungry so have tried to make more flavourul and interesting meals. I also eat meat/poultry more regularly due to low iron levels and am taking an iron supplement as well as Vitamin D /calcium/ magnesium. I don't drink green tea, maybe there is some benefit but I don't really like the taste! If you goggle food and" cure cancer" there are way too many recommendations, and unfortunately most are not proven. So bottom line, start by making some small changes in your diet such as more fruits and vegetables, whole grains and less processed food. You have enough stress right now, and don't need to add to it by following some crazy new diet that promises to get rid of your CLL. Cheers
I was diagnosed with CLL almost 9-years ago when I was 55, I'm still here and doing OK. I've been on treatment, Ibrutinib (going into year 8).
It's a life changing and extremely scary to be diagnosed with a disease that includes the word "leukemia" but in time, you will understand that it is not a death sentence, but just a new way of life.
In one day, you already are ahead of the game by reaching out and finding support. If you are in the USA, you might consider contacting the CLL Society, they offer support, education and more, also reach out to our beloved Leukemia & Lymphoma Society, they may offer financial support if you are in need of treatment in the future.
My heart is with you in your new journey of "Living with CLL".
I was 52 with elementary school aged kids when I was diagnosed so I think I know a bit of what you are going through. I’m 70 now so I hope that, in itself, gives you some hope. You are off to a good start just getting educated and there are several great resources, this being one of them. For me, the more I understood my disease the calmer I got. I wish you peace as you embark on this journey.
My Mom was diagnosed with ovarian cancer last June. I spent 6 months commuting to a hospice in Colorado. At the beginning of her journey, all of her doctors and nurses were positive and discussed the amazing advances in ovarian cancer treatment. My Mom died in November. She never left bed after her first chemo treatment.
My Mom’s journey won’t be the same as my my journey. However, it is starting in a similar way with everybody including my wife and oncologist super positive. As you can imagine, I am starting my journey from a cynical, scared place since my Mom’s experience is what I just experienced 11 weeks ago.
Can I ask one question that I wish my oncologist had discussed with me. How long was your first treatment effective? Are the new treatments going to last longer?
Unfortunately, it depends on your specific flavor of CLL.
Some people can go a decade or more before needing any treatment.
Generally, with BTK inhibitors people can use them for many years until they stop working. The only problem is that you need to take it until it stops working.
This doesn’t apply to everyone but I get the sense that as you relapse from drugs the remissions get shorter and shorter. For instance, if you are resistant to BTKi then your remission from a drug like venetoclax may be shorter. A nice new video posted by CLL Society: youtu.be/f_DMteVmMbA?si=lvm...
Dr. Brian Koffman (founder of CLL Society) says it is like a game of chess. You have to strategize your treatment sequence given the information you have.
Try to make sure you have decent insurance going forward. Maximum flexibility is convenient. I was on Kaiser for a decade and it was fine. But when it was time for my first real treatment for CLL I decided I needed to switch. Kaiser was giving me a hard time about doing a trial that I thought would be best for me. So, I went to the marketplace and got the best PPO I could find. That way I could travel from Maryland to DFCI where the trial was taking place. You can find financial help at LLS if needed. Also, the federal government can subsidize a part of your premium if you aren’t too well off.
Oh no, that's so sad. I'm very sorry to hear about your Mother's terrible experience and death. And now you have this diagnosis, and all the attending fear and anxiety. And you are grieving the loss of your mother and maybe the loss of your faith in your body's ability to heal. I hope you have someone to talk with who can listen well. You have a lot to sort out right now. Strength and courage! There have been wonderful breakthroughs in helping people survive and thrive with CLL. In comparison to CLL, it is my understanding that ovarian cancer is a beast. Please take a deep breath and be kind to yourself and be careful driving while you get used all the changes in your life. I wish you well, may you be well, may you live well, may you feel well again soon.
My starting situation with CLL was about where yours was... 50s, career, main breadwinner, kids at home, parents deceased with bad cancer experience. It's daunting.
A few thoughts that have helped me, and an answer to your question:
- Be careful about going too wide early with discussion. You might be in W&W for many years yet. I told only my wife for the first year. Didn't tell kids until symptoms became more obvious.
- These days, your first treatment is likely to have positive effects and get you some remission - could be 18 months, could be many years, some folks have been in remission for 10-15 years or more. And there are multiple treatments, and multiple types of treatment, available.
- Consider your downstream financial and employment situation carefully. You may not be able to add to your life insurance at this point. So planning your finances and keeping your insurance situation stable is one thing to keep top of mind. Employers vary; some are great, some less so, but there are protections in place in the US (I'm guessing that matters from your handle). I came to this community for advice on that - that thread is here: healthunlocked.com/cllsuppo... Short answer: consider before letting your employer know, but at some point it may make sense to do so.
- Think about your support network. Spouse, friends, clergy, therapist, fellow CLLers all are valuable to keep your sanity. CLL can be a tough disease mentally - it's complicated, Watch and Wait is hard to sit with, declines can be quite gradual. Building a support network now will help later.
- Get the tests. The more insight you can have into your situation, the better your chances of getting the right treatment. 40% of CLLers get the wrong treatment, don't be them. Line up a CLL specialist, even if you don't need one for some time yet. Read up - cllsociety.org is a great resource for new CLLers.
- Remember that many CLLers watch and wait for years before needing treatment. Remember that there are many good treatment options. Remember that there has been tremendous progress the last five years: now it's likely taking pills for a bit with some manageable side effects or limited-duration chemo regimens that are tolerable. Five years ago that was more likely to be bone marrow transplants and splenectomies. Remember there is a healthy pipeline of new drugs and many clinical trial options. You're in good hands.
- Also remember that more than half of CLLers don't die from CLL; it's the immune system effects that need to be managed a bit. Being on top of vaccines and immune system exposures makes a big difference. This can be an adjustment, but there are many CLLers who live decades with these approaches.
It's a lot to take in, and it took me a year to work through the shock and I still have to balance health, treatments, fatherhood, and career every day. But it's been manageable in the end and I expect many more years of worrying about it.
Hang in there. It gets better.
This community is the best one out there BTW... supportive, knowledgeable, busy. Take advantage, and welcome.
I was diagnosed at 43. Probably had it 4-5 years before that based on previous blood tests. I am 54 now and still on watch and wait. My WBC is nearly half of what it was 11 years ago. It took me close to a year to come to grips with it. It just takes some time. I still worry about it sometimes but it doesn't consume me like it did at diagnosis. It will get better with time...that I can promise.
Everybody has a different journey but with new treatments I have a lot of hope for the future. When (probably not if given my younger age) I do need treatment I can imagine the treatments available will be even better. I don't think it is unreasonable to think there will be a currative treatment available in the next 5-10 years.
As for getting FISH results, I live in Canada which generally doesn't do FISH testing until it is time for treatment. Looking back I am really glad I have not gotten the testing. I think it is kind of pointless early in the diagnosis and will just add stress. I prefer to live in ignorance and it has worked for me so far.
I understand the feeling you are having, learning you have any kind of cancer is scary. My husband is the one with CLL but I had my own bout with a different kind of cancer not quite 2 years ago so I am in the club. First I have to say you have found a treasure trove of help by coming to this forum. I don't know how you were introduced to it or if it was just a bit of luck that you found the most informed group of people you could ever find to guide you through this journey. I don't believe my husband would be alive right now without the knowledge and help we received by numerous people on this site. There have been so many new treatments just since my husband was diagnosed just 9 years ago and I have no doubt that at your young age that there will be a cure in your lifetime. Don't hesitate to come here with any questions you may have along the way. Best of luck to you.
Hey there EastBayDad, East Bay mom here. I’ve been going through almost the same roller coaster since my similar flow results popped into my health portal in September, surprise! I’m a bit older than you, a just retired teacher, both kids in school, and I was ready to jump into the next phase of life. I was similarly scared, sad, and angry. It just seemed so unfair.
Turns out I’ve probably had this for years, based on prior CBCs that I shrugged off during the COVID days, and while I’m glad I didn’t know before, now that I do, I want all the information I can get. I wanted my FISH results and all the others because it helps me understand what happens next. I don’t know which academic institution you’re referring to, but if it’s the one with offices in Emeryville and the South Bay, they’ve been great so far.
And if educating yourself is something you want more of, avoid Dr. Google, try searching cllsociety.org for up to date info. There are also some great podcasts I listened to about how far treatments have come and they gave me a lot of hope.
Best of luck on this journey none of us wanted to take, but know you’ve got plenty of company if you need it.
EastBayDad - I am very sorry you recently lost your mom to cancer. You are hearing the same words that were said to your mom and her loved ones and that is adding to your anxiety about your diagnosis.
In our case, the advances that have been made have made chemotherapy almost obsolete as a first, second, or third choice of treatment. I am on a phase 3 trial of Pirtobrutinib and am doing really well most of the time. This is a non-covalent BTK inhibitor. Because it is non-covalent (it does not permanently bond to its target), it has fewer side effects - no headaches, no muscle aches and pains, no heart issues for me. And all of my various blood counts are normal or near normal, except for my immunoglobulins, which are low.
I still hike and ride my bike at age 72. I do take longer to get over colds than my husband.
I mention this because it seems that most treatments for CLL leave one with low immunoglobulins. With these low, we are more at risk for serious infections. The IgG can be boosted by injections.
I noted that you have children and are likely working. You may be exposed to more potential pathogens than me. It would be helpful in the long run to learn how to minimize your exposure while continuing to be a dad and to work.
You may never need treatment or you may need it in one year or ten years. There really is no magic pill or food to change your particular path. You can get caught up in your vaccinations and ramp up your exercise. Try to eat a healthy diet, sleep well, and not worry too much. That may seem impossible now but we are a pretty happy bunch in this site.
Hi,
This journey never seems to get easier. I just got my Fish results back. I have Trisomy 12. I have been unable to reach my oncologist to discuss what this means. Anyone else just have Trisomy 12? How long until treatment? What was initial treatment? This week has crushed my spirit.
Trisomy12 is one of better results you can get from FISH testing; 13q del is best, followed by 'normal', that is none of the common deletions found, then trisomy12, 11q del and 17p del. You were wise to ask here, rather than search online, because modern treatments have largely leveled the treatment responses achieved for the different FISH markers. The big influencer is (or was) 17p del, where CLL responds poorly to the older chemoimmunotherapy treatments, because they rely on an intact TP53 gene to trigger apoptosis which is usually lost with the deletion of the 17p arm. Chemoimmunotherapy treatments aren't offered in the USA anymore (or shouldn't be - non-CLL specialists have been known to recommend inappropriate treatments). The only possible time you would be offered chemoimmunotherapy in the USA - specifically FCR, is if you were mutated IGHV, because there's a ~55% chance of very long, possibly indefinite remissions. Some of the early FCR recipients have been in remission for over 20 years. Otherwise the modern targeted therapies outperform chemoimmunotherapies.
With respect to what your initial treatment might be, now's the time to get up to date with your non-live vaccinations, re-evaluate what you can do to improve your health (fitness, weight, nutrition, etc), find a CLL specialist and adjust to living well with CLL. Browse through our Pinned Post section to read from the collective wisdom of this community: healthunlocked.com/cllsuppo... Prognostic markers are only predictive for a group and within your (trisomy 12) group, the time to treatment varies with the individual. You can get a feel for your specific pace towards treatment by monitoring changes in your absolute lymphocyte, haemoglobin and platelet blood test results. Your specialist should be monitoring changes in your spleen and other nodes and keeping an eye out for how your health might become impacted by your CLL.
If you are interested, you can observe by following new posts, how long term follow-up data from all the newer treatment drugs, given as either long term maintenance or fixed term combination therapies, is interpreted by CLL specialists to determine which of the many and growing number of treatments will best suit you, should you get to the point of needing treatment. I've tried to keep up with the new drugs and treatments in this post: healthunlocked.com/cllsuppo... Clinical trials are a great way to gain early access to a new treatment that is expected to be as good or better than established treatments. That's something to think about when deciding on your specialist - the degree of clinical trial involvement. Currently, there are 22 showing in the Bay area: clinicaltrials.gov/search?l...
If you have Kaiser, In my opinion Oakland has some of the well versed oncologists for CLL. That is where I am being seen. Please know you have a support system here.
Is that just FISH or is it FISH and NGS? FISH tests for wholesale deletion or in the case of Trisomy 12 addition. NGS looks for mutations or deletion of a small part of the genes, ATM, SF3B1, TP53, XPO1, NOTCH1.
On CLL14 trial there were 84 out of 421 with Trisomy 12. About 3/4 were uCLL and half of them had NOTCH1. While only 10% of mCLL with Tris 12 had NOTCH1. There were 21 with just Tris 13, 14 were uCLL.
VenG improved PFS of these patients significantly, and affected patients should preferably be treated with a novel compound. Interestingly, in patients with trisomy 12 (18% of patients), there was no progression or death event with VenG during the observation period, which is a remarkable result with yet-unknown biologic background.
It's going to be alright. Just don't read anything dated or heavily dependent on reports dated before 2017 [1]. Chemo FCR, BR and other chemo should only be a comparator.
[1] Like my NHS FISH/NGS that had "poor" prognostic comments for ATM del and SF3B1 mut based on reports from 2010 and 2017.
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Advances in Targeted Therapy for R/R CLL OncLive videos & transcripts by Nirav Shah MD & Nicole Lamanna MD
Newly diagnosed with CLL
Does CLL begin neonatal?
