Just wondered....my bloodwork done on 12/27/24 was the usual with abnormal highs or lows in: rbc 3.9,hemo 11.0, platelets 129,MCHC 30.9,ImA Qn Serum 59, MCV102, Beta 2 microglobulin 4.5 and kappa light chain serum 31.5. The recent research I have done stresses upon being diagnosed, FISH, TP53 and IgVH should be tested immediately. I have NEVER had any of those tests!! Can anyone tell me how IMPORTANT any of these tests are to confirm diagnosis and need for treatment? I am at the stage where I know SOMETHING is NOT RIGHT with my body and I so desperately need to know what and why. The ulcers on my left leg continue to worsen, which is scary. Doc I see tells me he has no idea why I have lymphedema. My bloodwork ALWAYS states blood must be warmed up before processing. At first they thought due to agglutinins, but now are saying cryoglobulins. I think cryoglobulins cause blood vessels to swell, which might affect the lymphatic vessels???? Any advice anyone can offer will certainly be appreciated. Bloodwork also stated: Monocytes show aberrant expression of CD56, a finding that can be seen in association with both reactive/activated processes as well as neoplastic processes. I am scheduled to see hematologist/oncologist on March 6th and want to be equipped to ask for the 3 stated blood tests, if deemed necessary. Keep in mind, I was diagnosed in 2012 with Waldenstroms and had many rounds of bendamustine, rituxan and prednisone. In 2016 I had TAVR to replace aortic valve. Most recently diagnosed with CLL,
BLOOD WORK DIAGNOSIS: Just wondered....my... - CLL Support
BLOOD WORK DIAGNOSIS
With respect to additional testing after diagnosis, generally flow cytometry testing is definitive for a diagnosis, but your situation seems to be one of the rare exceptions where perhaps you do have more than one B cell lymphoma. (Waldenstrom's macroglobulinaemia (WM) and CLL are both indolent Non-Hodgkin's Lymphomas (NHLs) and we do have a few members who have more than one NHL.) It can sometimes be challenging to tell apart close cousin Non-Hodgkin's Lymphomas like WM and CLL, so if you haven't already done so, it might be a good idea to consider arranging for the one free consultation with a recognised CLL specialist through the CLL Society. cllsociety.org/programs-and... to confirm you do have both NHLs. The CLL Society can also help you find a recognised CLL specialist, many of whom would also be across WM. See cllsociety.org/newly-diagno...
With respect to additional testing after a confirmed diagnosis with CLL, that depends on your country of residence. In the USA, it's reasonably common to have further testing to determine approximately how long you can expect to stay in watch and wait. What tests are done depends on your specialist centre, but it's usual to have FISH and IGHV mutation testing done and perhaps TP53 and B2M testing. In other countries that have universal health care, because FISH, IGHV and TP53 testing influence treatment choice and can, with the general exception of IGHV mutation status, change over time, that testing is generally left until just before starting treatment. That said, prognostic testing is becoming more commonly done earlier, as it has become less costly to do. Anyone who is still working and is looking for some guidance on career options (e.g. they are working in a high infection risk occupation, such as teaching very young children or in the medical field, where they are often in contact with patients who have infections), could reasonably argue for prognostic testing to be done.
Neil
Hi Neil, I’m at Week 4 of Ven and Obin treatment. Bloods were ordered, including FISH, and done two weeks prior to starting treatment. I ask every time I’m at Drs Appt, or Infusion ward, but so far, they keep telling me they are not back yet. I’m in Sydney, and they tell me it usually can take a month for for FiSH results. But it is now over 6/52. Is this unusual in Australia?
Thanks for all your informative posts too Neil.
Indie.
Seems an unusually long wait for FISH testing. It could be because your pathology lab batches FISH testing, so they've been waiting for more to come in, or maybe whoever usually does them has been on leave? I hope you don't have to wait much longer.
Neil
I would like to THANK EVERYONE for their responses regarding blood tests for CLL. I see the hematologist/oncologist on 3/6/25 and will see what he tells me. This afternoon I had a fat pad biopsy done for Amyloidosis. Doctor had to draw 4 times. She told me I did NOT have much fat. I was numbed first, so it wasn't too bad. Actually feels quite sore now, which she told me it might. I had to laugh to myself....I recently turned 79 and have lots of "stuff hanging, " which I just assumed was fat. Doc told me I could thank my 2 daughters for that and 2 C-Sections. First birth was an emergency C-Section. In "those days" any future deliveries had to be via C-Section. Different in today's world. Anyway, I should have results in about 1 week. Hoping and PRAYING it is negative. Don't really want to add another chronic disease to my list. I do have one more question regarding CLL. I am currently at Stage IIIA kidney failure. When it is time for treatment, will this limit my choices? So many things to worry avout.....I try to just face one day at a time.
Hello Ricky. I do not think there is any consensus among cll doctors that FISH and IGHV testing be done at diagnosis.
That street of testing is more common at diagnosis in the US than in other countries. FISH and IGHV testing is routinely done at diagnosis in major cancer centers. Local oncologists are less likely to do it. If they do order testing, FISH is more commonly done than IGHV.
The reason some doctors do not do these tests at diagnosis is because theyare expensive tests and many doctors do not think FISH and IGHV testing is needed until such time treatment is indicated.
In the early stages of cll, the results of FISH and IGHV testing is largely prognostic. Your doctor is generally not going to treat you, or not treat you, based on FISH or IGHV test results.
The results of FISH and IGHV testing can inform treatment decisions a doctor makes, so it is much more common to do this type of testing when someone is nearing treatment. For example, we know now that 17p cll does not respond well to chemotherapy like fcr, which is still used in many countries. So FISH testing is not just prognostic as one nears treatment, it can guide a doctor in what treatment option to choose.
There is nothing in your labs I saw that indicates you need treatment now, but your platelets and hemoglobin are low and you could be headed there soon.
All that said, I think more info is better than less, and that at a minimum FISH testing can provide a baseline for where someone is today. FISH results can change over time and I think there is an argument it’s not just prognostic. It might help our doctors at some point to know if our cll type is changing.
You should ask your doctor why such testing has not been done, and ask for it if you want. If you seek a second opinion at a place like Mayo or MD Anderson, they would likely do it as a matter of routine.
FISH and IGHV testing is not necessary to confirm your diagnosis. That is usually done with a flow cytometry test. If you have been told you have cll, you have probably had a flow test done on one of your blood samples.
Good luck. If you are interested in knowing more about the type of cll you have and your prognosis, I think you should mots definitely discuss this with your doctor. I am not an expert, just giving you my layperson take on things.
I live in Germany and voluntarily have statutory health insurance. Here, the IGHV mutation status and the FISH test were ordered from my haematologist as part of the initial diagnosis. The laboratory carrying out the test is connected to the nearby university hospital and also conducts its own research.
Germany is a developed country. FISH and IGHV testing at diagnosis is much more common in developed countries.
But even in developed countries, I do not think these tests are routinely done for everyone with cll outside of clinical trials and major cancer centers. I think most doctors will do FISH testing prior to treatment, primarily to see if someone has 17p cll which does not respond well to chemo.
Insofar as IGHV testing, a lot of people never have it done. This forum is probably not reflective of how frequent IGHV testing is done as it’s a collection of people more likely to be proactive than some others will cll.
I would still venture a guess that we have lots of members who have never had IGHV testing. My local oncologist ordered a FISH test for me at diagnosis 9 yrs ago, but he was recommending treatment at the time. After learning of IGHV testing, I asked him if I had had such tests done. He didnt even seem to know what IGHV testing was, one of the reasons I went to a specialist.
According to our national treatment guidelines, these tests are optional at the time of diagnosis. At most, they influence the initial frequency of controls. But I found it psychologically helpful to know roughly what to expect.
Just curious, is it at the patients option or doctors option?
I am almost always in the more info is better than less info camp, so I wanted to have the testing too, that’s one reason I went to another doctor.
When I first saw Dr Keating at MD Anderson, I asked him if IGVH testing was important. He said he thought it was seminal. So evidently not all cll doctors view cll testing as prognostic only.
I am pretty sure IGHV testing is much more available in countries like Germany and the US. To the point of the original topic question, I still do not think IGHV testing at diagnosis is standard practice for most doctors outside of a clinical trial. Of course there are exceptions.
To be honest, I do not know. My haematologist did not ask me explicitly, but he certainly understood from my questions that I would be very interested in the results. But I think, when it comes to genetic tests, we have a right not to know. However, I was asked whether my results could also be used for research purposes.
loveRicky, Here's a short video with 2 CLL specialists at Memorial Sloan Kettering in NYC speaking to what cajunjeff responded about. As Jeff says, I think this testing is extremely common at major cancer research centers in the US however, even some local oncologist will order them. In my case that's what happened. By the time I was referred to Sloan Kettering to see Dr. Roeker I had all these results in my digital record making the 1st consult pretty straight forward. Bigfoot
youtu.be/1QHKn0PHNgM?si=kko...
Thank you for sharing, Bigfoot. The video was very informative and Dr. Roeker seems VERY knowledgeable about CLL. I truly believe, even IF we have only one visit with a CLL specialist, it would be very informative and put out minds at ease a bit. I guess we have to be pressing for answers because WE DO MATTER! You were truly blessed to be able to see Dr. Roeker. I would have a transportation issue of getting to see a specialist who is far from Mt. Laurel, New Jersey. I was hoping to hear from MEDICAID soon regarding my application. I was told there are 800 appliations and ONLY 6 people who are qualified to process them. Sounds like quite some time until I know. Again.....ONE DAY AT A TIME...trying to make the most of EACH day.
loveRicky, Glad you found the video helpful. I'm so impressed with Dr. Roeker that when she announced her move from MSK to Mayo I followed her. I figure when you find a Dr. you are comfortable with and trust why change. I'm sure there are other great CLL doctors out there, but she has a patient bedside manner that's pretty special and I didn't want to start over with someone new.
I believe are lot of folks on here see specialists at UPenn. Would that work? Bigfoot
U of Penn would work. They are in Philadelphia, but they have alot of satellites in NJ. I will go online and see what I can learn. I MUST find someone who I feel confident with. Someone that I know truly cares about ME and not someone who assumes fatigue, aches and pains is "just old age." WE know OUR bodies and when something just doesn't feel RIGHT. I just pulled blood work up from January 12 and I know it isn't good to have high free kappa, lambda and kappa/lambda ratio....all high. Immunoglobulin A, Qn Serum low. I am so weary of constantly having tingling and numbness in my feet that doesn't go away with position change. It is difficult for me to walk. I must always wear clogs because it is difficult to get a regular shoe on the left foot. Obviously, the ulcers are another story. My left leg is the worse, but now the right leg is beginning with the dark discoloration. I had testing done and it showed no vascular issues. I have learned through my own research, once your skin is damaged, it won't repair itself. My leg has been this way for about 3 years. Next test will be for cryoglobulemia to see if that is affecting my lymphatic system. I am strong and can deal with things, but until we find the cause...how do we cope?
Looks like they have quite a few at Cherry Hill.
pennmedicine.org/providers?...
You have made my day, Big Foot! Wish I could buy you a cup of coffee or a beer, your choice!! Cherry Hill is convenient. My Jeep is old (2005), I have been told the bottom is very rusty, so I could loose a wheel. This is why I stay home alot. Hoping to get accepted by Medicaid because they actually provide you with rides to your doctor appointments. I am going to make some calls and see when I might be able to schedule an appointment. THANK YOU AND WE ARE ALL BLESSED TO HAVE THIS WEBSITE.
😁2 weeks ago I would have taken a beer, but now I'm on Pirtobrutinib so I'll have to take the virtual coffee.
blood test for cll
ALC and WBC doubles in 6 months 
Blood tests
coming to end of V+O treatment
CCL blood work
