My dad was diagnosed with CLL almost 2 years ago. He got CLL from aiding in the cleanup of Ground Zero after 9/11. Since his diagnosis, his blood count remained the same and they’ve just been watching him.
Today his doctor told him that his growth has gotten bigger and it’s time to discuss treatment. I don’t know what stage he’s in or any other info, because I only heard the word “treatment” and a wave of panic, and fear washed over me. He’s only 61...he was always so fit, healthy, and full of energy. The happiest man you’d ever meet. Even with his diagnosis, he always has a smile on his face.
I’m not really sure what the point of this post is, but I guess I just need to hear from people’s experiences.
Jellybean: So sorry to hear of your dad's possible nearing treatment. Do you know what is being referred to as "his growth has gotten bigger?"
If you are interested in learning more about CLL, and the symptoms that usually call for treatment, just ask the question and there will be people coming out of the woodwork, so to speak, to give you information.
In the meantime, please feel free to look into the "related" and/or "pinned" posts where you will find much solid information and some conversations between members regarding issues.
So, welcome, and please do feel free to ask any questions you may have.
We are all at varying places in our CLL journeys--some younger, some older (I am 77 and untreated.) There will be others you will find with a story and history similar to your dads.
Welcome to the group, you’ll find information and support here for you and your lovely Dad..
You don’t say where in the world that you are located but that would help people to respond appropriately as things are different around the world.
Thank you for the quick replies. We’re in NY (Long Island). I know he had chest scans done recently...something to do with his lymph nodes? (I’m still trying to learn about this) I guess they were bigger than normal which made his doctor want to discuss treatment. His blood count has still remained the same since the beginning though.
CLL is strictly a lymphoma (one of the many Non Hodgkin's Lymphomas), but quite high lymphocyte blood counts can also occur. Where the tumor growth occurs (blood, nodes, spleen, bone marrow), varies from patient to patient and in your Dad's case, it appears that the CLL has congregated in his lymph nodes, rather than his blood. I expect the chest scans were done to see if any nodes are pressing on organs or nerves that would trigger the need for treatment. If that's not the case, provided no nodes are larger than 4 inches in their largest dimension, then your Dad may be able avoid treatment for some time yet (termed watch and wait).
Your Dad has a good choice of world renown specialists nearby. If you think he could benefit from a second opinion, (and perhaps gain entrance to a clinical trial giving him access to newer drugs), we have members near you that may provide recommendation. You may get more responses if you repost asking for recommendations and make your post private to this community in answer to the question "Who can see my post?"
Dear Sweetjellybean, Some very wise people have told me "Take a breath...breathe" . This has helped me especially when I was so scared. I am also a caretaker, not the patient. My husband is 65 and was a very fit, healthy man who has CLL. I have learned so much by reading, and asking questions. Go with your dad if you can, to his appointments. You will find out so much. Read the blogs about learning about CLL, and understand that we are all in this together....Smart patients get smart care. So make sure you and your dad educate yourselves on this. Please know there are NO stupid questions, just ask away. God bless you and keep you during this journey. Your dad is lucky to have a wonderful, caring daughter to navigate these troubled waters.
I'm sorry to hear about your dad. My husband has CLL and is 52, we're in NYC. We go to Dr. Kanti Rai who developed one of the scales that measure the progression of CLL. Hes very well known in the CLL world and Is in Long Island. You may want to look him up for a second opinion. They take all insurance. He's very kind as well. Wishing you the best.
Hi my dad also has it and was diagnosed 7 years ago. He has had chemo and is now on ibrutinib. There are so many treatments out there now, as my dads doctor said to him, you will die with CLL not from it. It has been a rollercoaster 7 years but I wish now I hadn't stressed about him quite so much. This forum has been an amazing source of support and information. Good luck on your journey! X
First - a few words of support... try not to panic. I was 63 at diagnosis and treatment, and am still in remission and feeling fine more than 5 years later... and since then, newer and presumably better treatments have come on stream. With any luck, your father will receive a treatment which will allow him to live a normal life for many years to come... we're all different, though, and there is always a degree of uncertainty about outcomes. There's no guarantee - but a good chance.
Second - a question: you link the CLL to work done in clearing ground zero - now, I would not be in the least bit surprised to learn that cancers have been caused by that very dirty work, but last time I checked the only known risk factors for CLL were being male, and being old(er). So - has the knowledge regarding the causes of CLL moved on, or are you maybe making an assumption here? I don't know - just asking for information.
I too would be interested in any post 911 cleanup evidence linked to CLL, afaik the only causal link has been with exposure to high levels of benzine. I would have thought that your dad stood a higher risk of some lung disease than CLL. I'm no doctor though.
Thank you for your kind words! It was recently added to the list within the past few years as a WTC related cancer. They called it the second wave since many of the people who have it, didn’t show symptoms until recently. A lot of first responders are being diagnosed with lung cancer, lymphoma, or leukemia. Unfortunately it was more than just dust they were sifting through during that time.
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I was unaware of this information, actually. On 9-11 my wife were in Las Vegas and with planes grounded we got a car and drove home to Maine. 2 days later we stopped at ground zero to pay our respects, before any real fences or large barricades were up. We spent several hours only but I always thought if anything could give me Leukemia, it was even 1 minute there. It was a hellscape.
Thanks for that - I hadn't seen this information before. I suppose, unfortunately, there was such a lot of muck about that it won't be possible to identify what compounds were responsible.
Once again, my best wishes go to your Dad... you will get an awful lot of information on this site, which with any luck will point you in the direction of an effective treatment.
We found that the CLL society, which is an information and blog site started by a doctor with CLL, was super helpful.
Be sure to consider all your treatment options and investigate any opportunities for medical trials. My Dad is in Australia and the options available there were very limited compared to what you have in the US. The medical trial that he is on has given him access to treatment that means he’s still with us.
There’s a long road ahead and it may be challenging at times, but try to stay as positive as you can and don’t forget to appreciate the good times too.
Hi jelly bean. I was 48 at diagnosis and now 53. started treatment after 4 months. Your dad is fit and will breeze through the treatments. Do you know what treatment he will be doing?
So glad you are reaching out for more information. You have come to the right place!
There should be no rush in making treatment decisions. It would be a good idea to take time for a second opinion from a CLL specialist, possibly Dr. Rai as mentioned above, or Dr. Lamanna (Columbia).
Also Dr. Furman NY Pres. Weill Cornell. There are some excellent choices in your area. Given the 911 connection it might be especially important for your father to see one of these researchers.
I also recommend recording appointments. It really helps to be able to go home and listen to what was said again. And if there are family members who can't be at the appointment, they can hear exactly what was said, rather than someone who was there trying to explain the information.
cllsociety.org has a good section on The Basics. You might also want to check out Dr. Susan LeClair's videos about understanding lab work on patientpower.info
Welcome! It's a club none of us wanted to join but we are all here for each other. Take ur time and go thru links and our posts. Important to find a CLL specialist. When he was diagnosed, did they do a bone marrow biopsy or FISH test or Flow C? Those tests are helpful to find out your dad's specific markers. Words like mutated, unmutated, deletions etc will be on his reports.
As suggested, go with him to his appts or another family member/ friend. Good to have another set of ears. Always ask for copy of reports from tests and blood work.
And thank your dad for his service in aiding in the clean up of 911. You may want to look into people who had any health problems or similar to ur dad's as the result of that time for any help. There may be agencies set up to help for emotional or physical guidance/ compensation. Not knowing you dad's insurance...just a thought. Hugs
I’m not sure what type of tests they did when he was diagnosed. My parents didn’t want to tell me too much at that time because I was going through a lot at work and planning a wedding, so they kept the info vague, despite my constant nagging for info. Now they’ve been (reluctantly) telling me more.
I appreciate your thanks and will send it his way! he is now “certified” in the WTC Health Program, so they will be covering his medical costs which we’re thankful of.
I am so thankful for all your support. It really helped a lot last night in my state of panic. I will definitely read all the info you suggested!
The word "Growth" kind of threw me off as it is a word not usually associated with CLL. That said, you always need a second opinion, my first doctor miss-diagnosed me. If indeed he has CLL and his CLL markers are at the point of needing treatment (I did not start treatment until 9 years after first diagnosis) there are some great treatments that do not use traditional chemo and are also more effective.
I'm only 3 months into my diagnosis (at 60) but the first thing I've learned is to get as many opinions as possible. I have a fantastic oncologist in Los Angeles who has referred me to the top specialists at the James Cancer Center in Columbus, Mass General in Boston, and the Moores Center in San Diego. He relishes his role as "quarterback" to a large team. As a result, my diagnosis varied from Stage 0 Watch&Wait to Stage II unmutated with urgent treatment needed. And I got into a very promising clinical trial in San Diego where I'm starting treatment next week. If your doctor hasn't referred your dad to other specialists and explored every possible clinical trial, ask him to or find a different doctor. And by "masses" I assume you're talking about his lymph nodes as mine are enlarged too, as is my spleen. Good luck to you and your dad!
Hi Jellybean-love this name! I too was diagnosed 2 years ago with CLL. I’m 57 now and still in watch and wait. As far as the WBC don’t worry too much about that unless really high. My doctors are always asking how tired I am. I hear if your just exhausted probably time for treatment along with a lot of other things to consider. I’m sure your dad has a CLL Doctor and there are so many treatments that are working wonders. You always have this site of friends with support and loads of information for you. Hang in there.
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he is now “certified” in the WTC Health Program, so they will be covering his medical costs which we’re thankful of. 
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