I just had my first visit at Dana Farber, and thank God I went there. Back home my hematologist hadn't run much more than ongoing WBC Differential; although, they did FISH and Flow Cytometry back in 2018 when I was diagnosed. My physician at Dana Farber picked up on things, such as my Spleen was oversized in April 2018, I've been complaining of abdominal problems for a while, my abdomen has grown despite my not eating anywhere near as much, and suggested a CAT Scan. She found a growth above my clavicle, which might be newly infected lymph nodes (or something else), and ordered CAT Scans of head, neck, chest, abdomen, and pelvic area. I also had a Bone Marrow Biopsy, and blood work way beyond anything I've had. I can see the results and my immune system is way beaten down, and my T Cells are extremely depleted.
One of the Blood tests is the Beta 2 Microglobulin, and my result was 34. Normal says 0.8 to 2.2. I know its a Cancer Marker (from Google), but I'm wondering if anyone has enough knowledge to tell me if it means very advanced disease. My WBC isnt that great at 40,000, and at home they said continue Watch and Wait, but I think my Dana Farber doc is thinking I might need treatment. I won't see her again until a few weeks from now. I'm really anxious until I'll see her again. Any input?
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On my tests the normal range was < or = to 2.51 mg/L
34 seems rather high, but you say you have WBC at 40K. Websites say:
"Beta-2 microglobulin is a protein that is found on the surface of the majority of cells in the human body and is shed by the cells into the blood. Beta2-microglobulin is abundant on the surface of white blood cells. Increased production or destruction of these cells causes Beta2-microglobulin levels in the blood to increase."
It’s hard to keep one’s anxiety in check. We all wrestle with the same problem. Try and focus on the fact that you are now being treated by the best of the best. It will make a big difference over the long haul. I also transferred my care from another hospital to Dana Farber. Overtime I have become more relaxed. You will too. Don’t focus on the next doctors appointment or test but rather on the fact that you have made an excellent choice regarding your care.
Thank you Mark. The reason I'm so nervous, is because I know that my stage of illness should be ground zero based on my WBC; however, a bunch of factors are leading to the thought that my illness is raging forward. I don't get it. Until I get the results of the CAT Scans, I'm freaked that it could have spread already. I know I need to calm down, and I'm sure I will, but the level of the professionals at Dana Farber have opened my eyes to the fact that this "Chronic" and "Slow" Cancer can be eratic and very different in each individual.
A high Beta2-microglobulin (B2M) is associated with a shorter time to treatment and prior to the currently available treatments, a statistically poorer outcome. Its use as a prognostic marker was promoted by M D Anderson. Thankfully newer treatments are rewriting the relevance of prognostic markers, so don't pay much attention to older B2M references.
I would expect that your Dana Farber specialist will be checking catefully for other indications that your CLL is active to see if you may be in need of starting treatment soon if your B2M result remains consustently high and no other reasons for the high result are found. You've certainly made a good move going to Dana Farber, proving the value yet again of seeing a CLL specialist. Incidentally the protocol for the trial I'm on was obviously strongly influenced by the Dana Farber Acalabrutinib + Venetoclax + optional Obinutuzumab trial, so you have some excellent treatment options available to you there. Probably yet another reason that you've made a good move.
Thank you so much Neil for being there and for the sound and knowledgeable input. When I Googled the B2M Marker, I saw reference to meaning a spread to the Brain if it is found in Cerebral or spinal fluid. Mine was of course from a regular blood draw from an arm, so I'm assuming that its relevence is limited to the CLL. Even so the grossly high level I guess is confirmation of what Dr. Brown was suggesting before all the tests were down. She didnt say I needed treatment, but I'm reading between the lines and guessing I'll learn in late March at my second appointment with her. I'm just hoping that the really high level of B2M doesnt infer that it spread elsewhere too.
Neil she said I need to see an Immunologist, and I'm struggling finding out who to go to. I'm normally superb at finding top level doctors for people, but Immunologist is causing a difficulty. Basically I'm finding when searching for Immunology that what comes up is Allergy docs, most of whom are Pediatricians. Maybe I need to search by a different terminology, or only look in large teaching medical centers? I'm in South Florida near West Palm Beach, but I don't care if I drive as far as Miami if necessary.
You've done well finding Dr Brown, but I'm surprised that she couldn't recommend an immunologist for you. My specialist recommended me to an excellent one last year, but given Australia is out of your preferred travel area , I hope someone more local to you can suggest a closer immunologist specialist.
If your high B2M result is not a lab testing error, it would be helpful to know the source. As you note, its the peripheral blood result which is relevant.
Thanks Neil. Murzik corrected me that my reading was 3.4 and not 34. The normal range is listed as 0.8 to 2.2.
She was going to check with someone located at Dana Farber, but in the tumultuous day I never got back to her about that. I started out at 11am at Registration, and finished the Bone Marrow biopsy at almost 5pm, so I was exhausted and frazzled. I realized after getting back to Florida that I'd better see someone here; although, I suppose I could wait until I go back to Boston in four weeks. The thing is if I start with someone in Boston, I'm living in South FL; unless, you meant she might suggest someone down here. In any case I imagine I'll have to find one at a major teaching medical center.
Hi Wizzard, I understand having the illness newly diagnosed is a dizzying affair, and some wise person above has encouraged you to take a step back and know you are in good hands at Dana Farber. My CLL presents as SLL and my WBCs have rarely been elevated despite having the disease all over and for fifteen years. This is a blood disease so that anywhere blood goes so can the disease, this might help you in letting go of the fear that the disease will spread while you're awaiting treatment. It is extremely rare for this disease to metastasize to the brain due to the blood-brain barrier. Dana Farber/Brigham & Women's have many great immunologists on staff, they can arrange a referral for you. Wishing you the best of luck on your endeavors.
Hey Livinglife, I appreciate your input. This site is wonderful, as is everyone who becomes part of its community. All the signs are pointing toward me approaching treatment quite soon, although I'm just diagnosed two years ago. My WBC is even only 35000. I've been wondering the last few days what is wrong with me. How can I need treatment when it seems my journey has just begun yesterday; when in fact, most others take many years to get to treatment and with much higher WBC. I keep thinking I have some other disease that looks like CLL, but maybe it is just that some CLL cases go really fast. Maybe the WBC count is just a number, and has significance in diagnosis, but really says nothing about how aggressive the individual case is.
Yeah, our diseases are quite unique to each of us and the particulars of our makeup, lifestyle, overall health, history, nutrition, etc. all play parts of the equation. I was in W&W for a little over four years and basically in treatment for the past ten years. An amazing journey. I'm glad you're sharing.
Just to make sure: does B2M really reads as 34? I suspect it is 3.4? Somewhat increased but definitely not too high. Everything under 3.5 at diagnosis Dr.Byrd considers as more good than bad prognostic factor.
Good luck with DF. Those centers make a huge difference in work up tests.
Thank you Murzik, and you are correct it is 3.4; still, that is above the high number of 2.2 by more than 50%. I don't know what readings come in for others who are High, so I don't know if 3.4 is outrageous high or just moderate.
I would say very moderate high, basically as Neil says we should see picture at large, I follow this parameter in my blood tests, but nodes, Hemoglobin, neuts and platelets are much more important for me. And as I mentioned, another CLL Specialist, Dr. Byrd from OSU is not very concerned when it is around 3.5.
CAT SCAN readings are available in USA within an hour. Check those when you do the scans, and smile and try to be very happy🍒, G
My beta 2 was always high. My CD38 was negative. These are somewhat discordant markers as many of us have, that is, a marker that predicts indolent disease and one that predicts more aggressive Cll.
As my Cll got worse, so did my beta2. In my case I think beta2 was a good indicator my Cll was on the move.
It took about a year on ibrutinib for my beta 2 to normalize. My doctor told me the fact it got back to normal was a good indicator.
That was nice to hear, but I have gotten to the point where I don’t fret as much over markers and things I can’t do much about. I remembering reading all the articles I could find on beta 2 when mine was high. In retrospect it was one of those things worrying about didn’t help me. It’s normal now, no thanks to the worrying I did about it.
Yours is not all that high. It may go up as you near treatment. But then it might go back to normal after you treat. Ibrutinib and venetoclax are doing great and maybe they will make beta 2 stats obsolete.
Glad to read the number is 3.4 and not 34. My Dr at the Mayo had said that treatment was indicated past 2.6. Mine was 4.5. Currently on Venetclox. Best wushes
Hey Rafe, thanks for the input. I suspected something was up with me, when I rocketed from WBC 30000 to WBC 45000 between early October and late December. The WBC overall, even at 45000 is very low for almost anyone with this disease, and I had been fighting a cold for six straight weeks, and I felt like i could hardly stand up on some days (I did continue working during those six weeks), but still that jump was beyond the 50% in six months guideline. Now this reading of 3.4, with your doctor saying ready for treatment at 2.6 is probably another good indicator. I guess I might be one of those super weird and unheard of phenominoms with CLL, who need treatment at WBC levels about one third most others who finally go on treatment. Oh Well, maybe I have some new version of the disorder.
hi, I’ve been treated at Dana Farber for the past 6 tears and have lots of experience with B2M. It’s not the greatest marker for CLL but it is a stronger one for Multiple Myeloma. feel free to text me and let’s discuss and compare some notes.
Glad you found the decimal point for your B2M result.
Your story supports the theory that it is best to see a CLL specialist for proper diagnostics and treatment. Kudos to you for taking the initiative, particularly when distance is such an inconvenience.
The B2M has been done with every lab of mine at DF. After 42 months on Imbruvica, it's typically 2.5 for me. In layman's terms, it's kind of a marker for inflammation, burden, or activity. When I had a microbiome explosion last summer, lots of numbers went a bit crazy, particularly the B2M, which elevated to 3.5, and neutrophils, which doubled, clearly mobilizing forces to fight infection.
Re: the immunologist, yes, the title "Allergy and Immunology" go hand-in-hand. While I know a good one in the Boston area, can't help you in Florida. Did Dr. B give a specific reason that you should see one?
Thank you for taking the time to communicate Stars. Dr. Brown simply said I should be seen by an Immunologist, and I had the impression she was going to communicate with one that day; however, so much happened after I met for the hour with her and after that it maybe got lost. I went for CT Scans and then a Bone Marrow biopsy, and her assistant was hard at work making sure I got all of that done before I left at the end of the day.
I'll be going back to Boston to see Dr. Brown on March 31, with a regular blood draw an hour before I see her. I figure its not pressing to do anything before then, because I seem to be a little better and stronger since my visit on Feb 18. The results I can view on my patient portal also are encouraging, and Dr. Brown did email that things were looking good. She said it was possible i might not need to start treatment, but at that point the full Bone Marrow results were not in. I saw them and used google to understand the results, and I think that came out good too. The amount of Lymphocytes in the Marrow were 44% and the M:E ratio was 1.2 to 1.0, and the Cellularity said OK. From what I can determine that sounds good. The CT Scan showed alot of swollen lymph nodes from top to bottom of the body, but otherwise were clean. I noticed some lymph nodes were over 2 cm with one in the pelvic area 2.7 cm, and I think that isnt so hot, but I guess with CLL its to be expected.
On the DF patient portal, you can send a message to Dr B. If you would like to know, you could ask why she wants you to see an immunologist, and whether she wants to recommend someone for you to see next time you're in Boston or if you should look in Florida. I find that the more judiciously you use it, and the more succinct the message, the more the docs like it.
Will be interesting to see when treatment is recommended. My bone marrow was 79% involved, and I had 5 nodes in my abdomen ranging from 3.5 - 5cm, not to mention the myriad nodes in neck and armpits. I wish treatment had begun earlier. It took Imbruvica a year for the abdomen nodes to melt away.
Are you a patient at Dana Farber too? It sounds like you are with the knowledge of Patient Gateway.
During Medicare Season (I'm an agent) I worked seven days per week for seven weeks, and I got sick around the second week of Season. I didnt stop working, and my level of exhaustion got so bad that I almost keeled over a few times toward the end of the day. Season ended Dec. 7 and by December 20 I was still fighting whatever it was. My WBC shot from 30000 in October to 45000 on Dec 20, which alarmed my local Hematologist, so she ran Immunoglobin blood tests. All three readings IgA, IgM, and IgG were all quite low. I know I've had trouble fighting illnesses, and get sick on every airplane trip I take, in the last five years. I've had Pneumonia five times lifetime, with three in the last four years. So it wouldnt take a rocket scientist to suggest I see an Immunologist, and likely I should have seen one four years ago. I'm feeling stronger and am not fighting sniffles for the last week, so I think i'm on an upswing. I emailed my local Hematologist about recommending an Immunologist, and she didnt want to discuss anything unless I came in to see her. I emailed back today that I am seeing Dr. Brown again on March 31, and likely would pick up with local follow ups after that. So I guess I'll just ask Dr. Brown what she thinks. I am not thrilled with the idea of starting to get infusions of Immunoglobin, even though I likely won't start CLL treatment, but maybe I'm being stupid.
Hey Stars I dont know how knowledgeable you are with some of these tests, but new results just popped upon Patient Gateways. It is serum protein electrophoresis, and one of the sets of data include the Immunoglobin numbers. They dropped on this test from what they were before in January locally. This is what they look like now:
I had a IgG test done in January. It came in at 578. Slightly above yours. Not great but not terrible. I haven’t had a chance to discuss these results with my doctor/nurse practitioner as my reading came in after my last appointment. As I understand it, having a low IgG in itself isn’t reason to start supplemental immunoglobulin infusions but if you have a low reading AND you have constant infections (like you) you likely need to consider getting supplemental infusions/injections. I’m also seen at Dana Farber. I plan to discuss my reading at my next quarterly appointment. I’m concerned that my reading has declined but given that I haven’t had any infections over the past several years i believe I’m ok for the moment. You on the other hand probably should find that immunologists quickly given your infection profile. I’m continually amazed at how this disease impacts us all differently. I wish you all the best.
Hey Mark. I was told by my local Hematologist that perhaps I should start transfusions, but I rejected the idea. Like you I don't feel that my incidence of issues has been that severe. Yes I have the history with Pneumonia, but I havent had one since 2017. I had two in 2016 and then one in 2017, but none since then. I just have gotten sick on three International trips in a row in 17,18, and 2019, but I got over each one by getting antibiotics in whatever country I was in at the time. I got sick for that stretch from beginning November through late December, my resistance had to go lower because I worked without stopping during that stretch. Since then I just seem each week for one or two days to get sniffles that don't get into a full blown cold. None of this has put me down in bed, other than two or three twenty minute eyes closed rests daily. To me I'm still fine, and the idea of infusions every three to four weeks sounds worse than what I'm experiencing.
If my visit on March 31 with Dr. Brown with her telling me I need immune system treatment, and it isnt because of the frequent fighting sniffles, I guess I'll listen to her. At least the infusions won't cost me anything, because they would be covered by Medicare Part B and my Supplement will cover the 20%. Its just that the idea of getting infusions every month for the rest of my life is real depressing.
We think the same. I really hate the idea of monthly infusions. It would probably require me to get a port or consider seeing if I qualify for self injections. Ugh. My next visit with my doctor at Dana Farber is in April. This will be at the top of my agenda to discuss and get input from my doctor.
I have very important input for you. I don't know if like me you are on Medicare, but if you are this is important. My work is Medicare supplements and other Medicare health plans, so I'm very up on this. If you get infusions in a clinical setting, it is covered by Part B. If you instead do self injected, it is covered by Part D. The difference is Night and Day to you in money. Under Part B you are protected by the 80/20 and also if you have one a Supplement. Under Part D you basically have very little protection and in essence get raped. If getting Immunoglobin treatment is necessary, and you have Medicare, choose the infustion in a clinical setting.
IgA and IgM can't be boosted, but a low IgG (typically below 400) AND frequent serious infections qualifies you for IgG infusions. These can be given via IV, termed IVIG, typically every 4 weeks to maintain adequate serum levels or subcutaneous IgG, self administered weekly, typically into the skin above the stomach.
There's a world wide shortage of IgG, which is provided by blood donations, with 1,000 plus donors supplying the IgG for one batch to provide a good cross section of immunoglobulin/antibody protection.
Thank you once again Neil. Hopefully I'll stay above 400, and I was 533 when tested on Feb 18. That was down from 629 on January 20. I don't know if that steep a drop fits within a typical range from one test to the other, but it seems that 17% drop in one month is pretty steep. I wasnt particulary sick during that one month, and I don't know if being sick or not can affect the number; although, i doubt it.
I guess i better hope I don't have any contact with anyone who has been exposed to Corona (not the Beer), because aside from the low immune system I have a history of getting Pneumonia. I badly wanted to plan a trip to the Philippines to see a new young Granddaughter. She will be 2 in September and I wanted to go in March, but my wife fought with me vigorously. I was arguing that the Philippines has not been a place where it has spread, but I do get sick on airplanes. My wife argued that i will likely cough or sneeze on the plane, and then we both will get quarantined for fourteen days and ruin everything. I decided to hold off for now.
As with everything CLL, you need to look at trends. My IgG was 487 at diagnosis and I lasted 7 years before starting IVIG, then a year later switched to subcutaneous IgG, which maintains a far more even blood serum level. With monthly IVIG, your IgG goes up to around 15 after the infusion and drops back towards your normal IgG with a half life of around 22 days.
Hopefully you'll be able to visit your granddaughter later, when she will remember your visit!
Dr. Richard Levine in Miami is an excellent Infectious Disease dr. He found that my body was not producing antibodies even though the IGG reflected normal numbers. Dr. Joseph Rosenblatt at UM is excellent.
Hey Bayside, good to hear from you again. I appreciate the input on a good infectious disease doctor. I'm risking a plane flight and going back to Boston for my second visit at Dana Farber. In this visit I'll get the low down on everything going on, in addition to powerful information on my prognosis based on test findings including alot of the mutation things. I already knew from the original blood work two years ago in Boca that I had Trisomy 12 and also Unmutated IgVH, and both are associated with cases that usually progress faster. IgVH is also known for cases with worse prognosis. The Beta 2 Microglobulin is one of the few dozen or so new tests they did in Boston, and I've read that a high number is bad for prognosis. My reading was 3.4 and Normal is 0.8 to 2.2, so I guess 3.4 isnt too good to have come up with; although, I think that the standard is being Above 4.0 to be really bad.
I expect to be told that I'm still alright at this stage with continuing Watch and Wait, but I won't know for sure until Dr Brown gives me the full low down. What I do expect almost certainly is to be told to seriously consider starting IVIG. The IVIG isnt for the Leukemia, and instead for low immune system, but it still bothers me alot to think of starting it. I gather that once started a person needs to continue with infusions every three to four weeks. To me that is a true change in my life.
Tonight I'm thinking of cancelling my plane flights and renting a car to drive the trip to Boston. From Boston I was going to continue with my wife to New York and stay near Central Park for three nights. Take in a Broadway play or two etc. Now I'm realizing New York is probably insane for me to risk, they closed the NBA, they might close Broadway plays, and the city is in a state of emergency. I guess I'd be nuts to continue there from Boston. With my immune system being so low, I'm realizing that the risk of the plane flight is likely a bad bet to make too. I don't relish a 22 hour drive each way (of course I'll break it into two days each way), but I guess I can't be stupid.
I have been getting I VIG for 18 months, every 28 days. Prior to this, I was hospitalized with pneumonia four times in 2 years. It is a wonderful help.
IgG, A, and M are immunoglobulin proteins that help the immune system fight bacteria. IgG lives in tissue, coating microorganisms to fight bacteria and viruses. IgA is in blood, tears, saliva, and on the mucous membranes of the respiratory and intestinal tracts, fighting to prevent bacteria and viruses from entering the body. IgM live in the bloodstream to kill bacteria, similar to IgG.
One more indication that our bodies are so amazing, even when they aren't working well. While my G and A levels are a little higher than yours, my M doesn't even get a number -- just <25.
Given your symptom history of late, it is understandable that the tests were ordered. I hope you are able to devote more time to taking care of your body with good nutrients, rest, sleep, and stress healing. Do yourself a favor and be good to yourself.
I've been meaning to post something I wrote up at the request of friends who are going through chemo for a variety of cancers. They know that I have adopted hyper-vigilance to stay healthy, despite low immunoglobulins, and they wanted to know specifics. One day soon, I will post it.
For starters, I no longer get sick after plane travel because I wear an N95 surgical mask in the airport and plane. Looks like a blue pig snout, and is uncomfortable, yet I don't pick up whatever is floating around in the germ-laden plane air. Unfortunately, I checked today to see if I could purchase some ahead of the Coronovirus spread. There are none available, except for a couple of enterprising price-gougers who clearly thought ahead and purchased a bunch, and are now breaking up packages and selling 1-2 masks for an exorbitant price. Personally, I think there is something very wrong with this mentality.
Good Morning Stars. Your comment on working hard to improve your efforts to stay healthy struck me today. Recently, like maybe a week now, I have begun to try to move toward being Vegetarian. I'm a lifetime meat lover, so this is a shock to me; however, I'm trying at least. My Brother is a physician who is on top of everything with staying fit and healthy nutrition wise. He became a friend of Dr. Dean Ornitz who wrote books in which he presents proof that a Vegetarian diet can REVERSE heart disease. My Brother Matt just finished a book that continues the work of Ornitz, and he mentioned studies in his book that show results indicating Vegetarian diet can help kill cancer cells. In talking with me last week, he said that maybe now I have more motivation to eat more like a Vegetarian. I tried about a year ago and then gave up in one week. We'll see where this goes, but I believe what my Brother is telling me. I'm still planning to permit Salmon, and I refuse to be Vegan, but I'm going to give it another go.
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, I hope someone more local to you can suggest a closer immunologist specialist.
On beta glucans (discussed but not instead of treatment!)
Accidently took 2 Calquence tablets last night instead of one
Blood results (last 2 years) 
