Hello. So glad to find this resource. I am a 68 year old woman in excellent general health. Yet I just learned two weeks ago that I have CLL, probably SLL. I’ve been working with a wonderful hematologist in nyc and hope to be seen soon at Sloan Kettering and Weill Cornell. Today my doctor said that my FISH results were in. I am not 17p deleted. No tp53 mutation. LDH is normal. The IgHV test is not in but the lab reported that I have double IGH. If anyone knows what that means and if it’s good or bad I’d appreciate hearing from them.
Also I did have a bone marrow biopsy and there were 40% cll cells present. My spleen is 16 cm and my blood had 15% cll clusters. This doctor is certain I will fall in the WW category. I hope she’s right but will be evaluated by experts also.
Another question I have is about fever. I’ve been having low grade fevers for three months, which is what prompted a visit to my internist. I tested negative for many infections. I am still not understanding what the fevers are all about and would like to hear from others who know about them.
That’s all for now; thanks in advance for any guidance or advice you can offer.
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Hi and welcome! The low-grade fever can be a Lymphoma B symptom, and most likely is once sources of infection have been ruled out. I had fever and night sweats for a long time before I began treatment.
CLL/SLL is one of the many Non-Hodgkin's Lymphomas.
I had low grade fevers during my first year after diagnosis, but I had neutropenia and hypogammaglobulinemia (low IgA, IgG and IgM). I had to work hard at reducing infection risks with a severely compromised immune system. I was diagnosed at stage 4 and had more of the 'SLL' presentation. I'm still in watch and wait.
Hi Babsnyc. SLL & CLL are considered different expressions of the same illness - often termed SLL/CLL. And, as AussieNeil mentioned, it is a type of Non-Hodgkin Lymphoma. The classic "lymphoma B symptoms" are: fever, drenching sweats (usually at night) and unintentional weight loss. Other typical symptoms include enlarged nodes, fatigue, loss of appetite. And the blood work will usually - in time - exhibit low neutrophils, hemoglobin and platelets (or any combination). Not everyone experiences everything, though.
I was where you are now just about two years ago when I was diagnosed. First and foremost all the many Feelings you have are normal. It’s an unbelievable place that until you are there you can never realize or understand what someone actually goes through. You will find as you go that information (accurate and recent) information is powerful. There is so much out there and much of it is outdated. Be careful google can be overwhelming and difficult to navigate. I am at Weill Cornell, great place and Sloan also is awesome so you are in one of the best places. This site also provides a great place to reference. So far in the two years of w&w the amount of advance treatments and changes is staggering. I had my follow up appointment today (I go every 4 mths which they monitor me) and left today with the dr Telling me about how fast things are changing. Make a list of questions, make sure you are comfortable with your doctor and the responses. As you gain more understanding of cll and all the treatment Options you will gain your balance and have more answers of how to move your life forward and address your diagnosis.
I had asked and tried to schedule an appointment with Dr Furman. I was directed to Dr Allen. If you are also direct you to Dr Allen I highly recommend him. He has worked with Dr Furman and is part of that whole group so I’m sure Dr Furman has a big influence on the whole department. Dr Allan is very informative, answers all your questions and is just a great doctor. He is just a really nice guy and felt comfortable and confident with him immediately If you want to message me directly or have more questions please don’t hesitate.
Hi our new Friend, I am 40 days into this and watched Dr Furhman in some you tube lectures and he seems really sharp and passionate about curing folks. I would go there if you can.
The biggest thing I learned from this whole ordeal is that you must avoid infections . I also learned to get nonlive vaccines esp for shingles. I learned that we have a great chance to live a long time with all of the great advances.
Hi! Yes this is a wonderful site that responds quickly to posts. My bone marrow showed 70% CLL involvement and I am also considered indolent, W & W. I do not know what double IGH means but since she is not concerned at this time I assume you are curious to understand every facet of your fish results. I hope someone here can answer but if not it should be on your question list. Or you could email the question, which is something I occasionally do with my CLL specialist at OSU. It is a question that the staff, not the doctor, can easily answer and I usually get a response within the day.
Hi Lexie et al...Realized this morning when I woke and saw your responses that I was not alone on this scary journey.
Lexie: How do I post a question list?
Last night I watched Dr. Pagel's "Not Your Father's CLL" video. My father actually had CLL and died from it in 1995. Dr. Pagel mentioned that 13q deletion is very favorable for a long WW period. My FISH study was negative for this deletion. I would like to know what this means. I have to say the most confusing part of beginning to understand this illness is sifting through the genetic markers and data. I have not seen a specialist yet and will put these questions on my list when I do but always grateful for any knowledge you can share.
Welcome to the group! One of the most stressing parts of this disease is the wait times between appointments. When in watch and wait, one often feels the need to be doing something to combat the disease, and doing nothing feels counterproductive. Your phone will ring and appointments will be set. Continue to study and learn about CLL, but don’t let it control your every waking hour. Get on with your life!
As for the fever issue, I had low grade fevers almost every evening prior to starting treatment. Now I do not get them unless I have an infection.
Again welcome to the group and best wishes for a long treatment free W & W!
Both my sister and I see Dr. Furman. I am indolent/W&W. My sister is on ibrutinib. As you already know from earlier posts, he's an extremely busy man. He's a natural born educator and wants you to understand what's going on with your disease. We talked for over an hour about the disease itself and current and future therapies. Come prepared to ask a lot of questions. He has a lot of answers.
Morning The Man: it’s interesting that you and your sister have cll. My father had it back in the dark days of 1990s and died within a few years. So in the back of my mind I’ve always wondered if it could be genetically transferred and would I get it. Now here I am. Speaking of genetics, the more I read about the karyotyping the more confused, reassured and alarmed I become. One video article said there are now 50 prognostic markers. Yikes! For example I am not 17p depleted but I am positive for cd38. Stayed up until midnight last night reading articles about cd38 and still confused. My first fish did not say what percentage of cells are cd38. One researcher said over 30% had negative outcome. I still do not know my IGHV status but I know I have two IVH genes. Is that good? Bad? Sorely in need of a specialist to sort it out for me. Speaking of which I did not mean to imply that I am a patient of Dr. Furman’s. I am hoping to see him if he is agreeable and waiting to hear from his office. I’m very glad to hear that you and your sister are in such good hands. Thanks for replying to me earlier. It helps so much to be able to learn from you all.
Sorry to hear about your dad. The good news - therapies have changed so much for the better in the past 5 years. If you dad was diagnosed today, his chances of living a pretty normal life would be much higher.
Anyway, I'll do the genetic predisposition one better - my brother also has a hematologic disorder - Waldenstrom's. While not exactly CLL/SLL, it's a blood cancer "cousin". My sister seems to think we were all exposed to similar toxins while we grew up. Who knows. For now, it's a scientific/genetic curiosity.
Like you, I am still muddling through all the prognostic markers. There are a lot of them. Based on feedback I got from Aussie Jeff, here's what I do know so far : being ZAP 70 negative and CD-38 negative + IgHV mutated is probably good news. Surprisingly, Dr. Furman did not do the IgHV blood test even though he did the other two. I see him again next month and will find out why.
Finally, at the end of our first meeting in April 2019, Dr. Furman asked me how I was feeling. I told him fine. He reminded me this is a long journey and the medications available (if and when I might need to go on some kind of therapy) are getting better and better. He also admonished me to do my best to live my life as I did prior to the confirmatory diagnosis.
I've done my best to embrace his words of wisdom. (My sister, who's been living with CLL for 9 years has repeatedly told me the same thing.)
Hi, Live in San Diego area. Diagnosed April 2015. Was WW and things happened to me that I was not use to. Occasionally low grade fever, very tired in early pm, night sweats, malaise and immune system compromised. My Hematologist ordered cat scan discovered enlarged spleen, emerging enlarged lymph nodes. She had me go through a series of Rituxmab infusions.
After the Rituxmab process I went to my oncologist at UCSD Moore’s Cancer Center. There I started oral treatment with Imbruvica 420mg daily. Spleen returned normal and lymph nodes went down, although with numerous side effects.
My whole takeaway from all this and to you:
1. Learn everything you can. My wife and I joined a CLL support group at the Cancer Center with other CLL patients.
2. Started a CLL binder with lab results, notes from my oncologist visits, any CLL educational literature, test results and a journal on things happening to my condition.
3. Attended CLL conferences in Southern, Ca.
4. Joined the CLL Society and tracked the CLL Society online information. Read HealthUnlocked post.
5. Developed my CLL expert and medical team. Hematologists, Oncologist, primary care doctor and dermatologist.
My Derm doc is important since I’ve had numerous pre-cancer skin lesions pop up. Treating them early as possible. I’ve had my primary doc a long time and he was responsive and understood the side effects.
6. Difficult one is trying to figure out things happening to me, if there from CLL, age or other effects from other medication side effects.
Thank you Doug for sharing your advice. I’ve got your numbers 1, 2, 4 covered. Number five is in the works. I am seeing one “World specialist” this week and a second next week or after the 4th. I am a reader so I’m digesting as much as I can. But a little knowledge is dangerous and so confusing, especially around prognostic markers. I am aware of the dermatology risks thanks to a support group member who pointed this out. I swim and sail a lot so I guess I will have to figure out protection. Right now though I’m hoping the two experts agree with my hemotologist that I am Ww. But somehow deep down I have a feeling I am going to need treatment soon. I have registered with all the orgs and am spending a lot of time watching videos and reading.
I hope you will get some clarity soon about cll symptoms vs our older age aches and pains. Have a good weekend.
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Start of my journey on FCR.
Collarbone lump
CLL with “normal” FISH
Who do I believe?
Too Much Testing??
