Hard to Resist High Tech Toys
Let us be honest about it: most of us love high tech toys and gizmos. Straddling two cultures as I do (I spent the first 20 years of my life in India, the rest of it in the USA), it seems to me the preference for shiny new gizmos is a bit more pronounced in USA (perhaps Europe too, but our European members are better qualified to comment on that).
The topic of this article is CT scans, with or without contrast, PET scans in lieu of CT scans, or why not go for a belt and suspenders approach and do CT scans plus PET scans. Which is a better choice? When should they be done? What are the risks and what do we get for our health-care dollar (as well as unavoidable dose of radiation exposure) when CLL patients get scanned? Does radiation exposure increase risk of getting CLL in the first place?
Almost everyone has their two cents on this issue. Be sure to log in so that you can follow the lively discussion. Fortunately, we now have some experts weighing in with more than two cents on the subject. If you have CLL, you will face decisions on scans, sooner or later and it helps to be well informed on the subject.
CLL: A Deceptively ‘Simple’ Blood Cancer
CLL is a beast of a different color when compared to solid cancers or even lymphomas. It is not possible to judge the status of, say, breast cancer or lung cancer without doing invasive biopsies or only slightly less invasive CT scans or PET scans. Some day we will have blood tests that can look for very specific and tell-tale markers, that can give us a good handle on all types of cancers and their stage, prognosis etc. Some day, but not today. Even PSA blood test for prostate cancer screening is not without controversy.
CLL is a leukemia. That very word says CLL is a cancer of the blood and therefore reasonably expected to be seen in the blood. But you and I both know that is over-simplification. CLL is a blood cancer, but CLL cells don’t just limit themselves to circulating in the blood, they also hang out in lymph nodes, spleen, liver, bone marrow and just about everywhere that blood and lymph travels – which means everywhere in your body. High tech scanning is obviously necessary to peer at your innards that cannot be felt by mere poking and prodding. Biopsies are necessary to understand what is happening in your bone marrow.
The trick of the game is to learn when you need these invasive procedures – and when you don’t.
CLL Diagnosis
Is it possible to diagnose CLL using only blood tests? More and more, the answer to that important question is YES. Typically an abnormal CBC report with too many lymphocytes (high WBC, high ALC) is the alarm that triggers flow cytometry test to confirm CLL, rule out all the other lymphatic cancers that might confuse the diagnosis. All of the most modern prognostic tests (IgVH gene mutation status, FISH, CD38, ZAP70, B2M etc) are blood tests that cost you no more than a needle prick (and lots of dollars, if you do not have insurance).
Rarely do patients need CT or PET scans or bone marrow or lymph node biopsies just to diagnose CLL. If your local guy asks for any or all of these much more invasive (and expensive) tests just to confirm CLL diagnosis , be sure to ask why, what he hopes to learn from the results. When my husband PC was first (incorrectly) diagnosed back in 2001, we were foolish and naïve and he was put through a CT scan with contrast as well as a lymph node biopsy – for no good reason. The biopsy required full anesthesia and the incision site was painful and took a while to heal. Don’t you make the same mistake. Ask your questions, get satisfactory answers, before you sign on for invasive diagnostics. As always, it is important to understand the true cost of things.
There are some situations where the diagnostic picture is murky, especially if you are ‘blessed’ with atypical CLL. That may need more testing, over and beyond blood tests. People with SLL (small lymphocytic lymphoma) variety of CLL may not have enough of their CLL show up in peripheral blood circulation, these guys have the vast majority of their cancer cells hiding out in lymph nodes. A scan may be necessary to judge the stage of lymphadenopathy (jargon for swollen nodes or glands) and establish a base line for your disease.
CLL Monitoring: Why Do We Ever Need Anything More Than CBC?
While confirming CLL diagnosis and getting most of the prognostic testing requires only blood tests, detailed monitoring of your status as time goes on is not so simple. Most of us get fixated on the regular CBC reports, getting euphoric or devastated because the WBC or some other blood count changed just a tad. Even after we take into account silly stuff like instrument malfunction, built in errors and sensitivity limits, or a lab tech who had partied too hard the night before, there are some obvious limitations of depending too much on the regular CBC for all your monitoring needs.
- As CLL progresses, anywhere from 80-90% of the total tumor burden (i.e., total number of CLL cells in your body) can hide in places other than blood. Basically, trying to get a handle on total tumor load based on a CBC report is like guessing at the size of an iceberg based only on the bit of it you can see poking over the surface of a choppy sea.
- Most CLL patients develop adenopathy (swollen lymph nodes) as their disease progresses. But it is not uniform across all patients. People with SLL phenotype, people with 12 trisomy or 11q or 17p deletions (FISH results) are more likely to have bulky nodes. A well trained oncologist with calibrated finger tips can judge the size of your nodes quite accurately – that is, the ones he can feel by physical palpation. Not all nodes can be felt, especially those buried deep in your abdomen.
- But that does not mean physical monitoring of lymph node size is useless. Within limits, it is reasonable to suppose that all nodes are increasing in size at more or less the same rate. Therefore, if that pesky one under your chin or in your groin is growing fast, it is reasonable to think the hidden guys in your gut are growing just as fast. Reasonable, but not guaranteed.
- Swollen spleens are detectable by trained physicians during a physical exam. Most patients too can tell when their spleens are getting swollen – they get a sense of feeling full after having eaten just a small meal. When you start looking slightly pregnant (lopsided to one side) then it is no longer early stage splenomegaly (jargon for swollen spleen). My husband PC was convinced and swore his spleen was dangerously swollen right after his diagnosis. Turned out it was a beer belly and went away once he got religion about regular exercise.
- One other important thing that cannot be determined by simple blood tests is the status of your bone marrow. This unique organ in your body is the only place newly minted platelets, red blood cells, neutrophils, etc are created to take the place of old cells worn out and destroyed as part of the natural order of things. The only way to judge the health of the bone marrow is by means of a bone marrow biopsy. Since it involves significant cost and some ‘discomfort’, be sure to get it done some place where they do a lot of them, and the pathologist is qualified and experienced. A biopsy report is only as good as the pair of eyes that looked at the slides. Garbage in, garbage out.
When Are Scans Necessary?
Let us take a simple example. Your CLL has progressed to the point where your oncologist says it is time to start therapy. Of course, the million dollar question is deciding what to use as front-line therapy. You are sort of Bucket B patient, perhaps you have 12 Trisomy and a couple of the other not so good prognostic indicators. You are dithering and can’t decide between the present day “gold standard” FCR chemoimmunotherapy combination versus single agent Campath (alemtuzumab) that has been recently approved by the FDA in that role. How to decide?
If I were in your shoes, I would get a good scan that gives me a look see on what is happening deep in my chest and belly, get a handle on the size of the lymph nodes, before making my decision. Why, you ask? Well, the 12 Trisomy suggests you may be one of the guys with bulky adenopathy. And Campath does not do bulky nodes. In clinical trial after clinical trial, it has been shown that this powerful monoclonal antibody does a good job of clearing the blood and even bone marrow, but if your lymph nodes are bulky (present day definition: bigger than 5cm diameter), you are not going to get enough joy from Campath. If the scan shows you have tennis ball size nodes in your gut, I suggest you look at the FCR option a lot more carefully.
Of course, scans are not the only diagnostic tests you might want to use prior to making therapy decisions. A FISH test may be worth considering. Even if you have had a FISH test at the time of your diagnosis it may be a good idea to repeat the test. Remember “clonal evolution”? FISH status can change over time. If you have managed to “evolve” to a higher risk bucket, perhaps picked up a touch of 17p deletion, that is important information relevant to your therapy choice. Patients with 17p deletion often do not get those squeaky clean pcr negative responses to FCR. Research suggests drugs like Campath and Revlimid (also flavopiridol, a still-experimental drug out of OSU) may be better choices either as single agents or in combination with other drugs.
What the Experts Have to Say
Below is a detailed editorial by Dr. Tom Kipps of UCSD, lead-in to a full length article on the subject by the big guns out of OSU, including our own favorites Drs. John Byrd, Tom Lin etc . Guys, it does not get more credible than that – sort of like Brad Pitt, George Clooney and Matt Damon all in the same movie. (See, I am not just a housebound geeky old lady – I do too know the names of the ‘hot’ guys out there)
I urge you to read the Kipps editorial carefully. It is well written and has a lot of meat on the bones. I highlighted some of the juicy bits for you.
J Clin Oncol. 2007 Dec 10;25(35):5556. Epub 2007 Nov 5.
Value of Computed Tomography in the Monitoring of Patients With Chronic Lymphocytic Leukemia
Thomas J. Kipps
Moores Cancer Center, University of California, San Diego, CA
In this issue of the Journal of Clinical Oncology, Blum et al1 conducted retrospective analyses of the medical records of patients with chronic lymphocytic leukemia (CLL) to evaluate the relative value of computed tomography (CT) in assessing the response to therapy. Unlike the guidelines for assessing the response to therapy for most other types of non-Hodgkin’s lymphomas (NHL), the widely-used National Cancer Institute–sponsored Working Group (NCI-WG) guidelines for patients with CLL do not incorporate use of CT scans in the response-assessment algorithm.2 Nevertheless, CT scans increasingly are being used, not only to assess the response to treatment, but also for routine disease monitoring, a practice that has been largely discouraged.3 In their study, Blum et al found that the use of CT scans, as per NHL response definitions, had little value over the established NCI-WG criteria for assessing the response of CLL patients to therapy or for predicting post-treatment progression-free survival.
CLL is a systemic disease. Generally, lymphadenopathy detected at one anatomic site also can be found at other locations, giving rise to the notion that the disease can be followed by physical exam, the CBC, and other blood or marrow tests. However, a recent study published earlier in the Journal challenged this notion.4 This study found that CT scans could help stratify patients with early, stage 0 disease into two groups that had significantly different risks for disease progression. Thirty-eight of 140 patients who were not found to have enlarged lymph nodes by physical exam (hence the stage 0 classification) were found to have enlarged lymph nodes by CT scan, albeit of less than 2 cm in diameter except in five patients. Surprisingly, 13 patients (9% of the total) also were found to have splenic enlargement on CT scan that was not appreciated by physical exam.4 Patients who had evidence for lymph node enlargement in this study had a shorter time to initial treatment and poorer survival than did patients without detectable abnormalities on the CT scan. As such, this study challenged the notion that the physical exam for lymphadenopathy or splenomegaly can suffice for accurately staging patients with CLL.
However, an important question that needs to be addressed is whether CT scans can improve on our ability to predict outcome when other diagnostic and laboratory studies are available. In the former study by Muntanola et al,4 a significantly higher proportion of patients who had enlarged lymph nodes detectable only by CT scan also were found to have other known adverse prognostic indicators, such as leukemia cell expression of ZAP-70 or short lymphocyte-doubling times, than did patients without lymphadenopathyon CT evaluation. These other risk parameters also could delineate a subgroup of patients who had a relatively short median time from diagnosis to initial therapy independent of the results obtained by CT scans. In the retrospective study presented in this issue, Blum et alnoted that achievement of either a complete response or partialresponse by NCI-WG criteria had a significant bearing on the ability to predict overall survivalregardless of the results obtained via CT. Moreover, the NHL-CT assessment of response did not perform better than standard NCI-WG criteria in predicting the length of progression-free survival.
More studies are needed to evaluate the relative value of CT scans in monitoring patients with CLL. The need for this is particularly apparent with the advent of therapy with alemtuzumab, an anti-CD52 monoclonal antibody with therapeutic efficacy in inducing complete responses in CLL that appears inversely proportional to the extent of lymphadenopathy, which more often is being assessed with CT scans before therapy. 5 Because of the need for further study, the upcoming revision in the guidelines for treatment-response assessment will suggest that CT scans be performed before and after treatment in clinical trials involving patients with CLL. The prospective analyses of the value of CT scans relative to that of other CLL-associated risk indicators in predicting outcome will be necessary before making recommendations to use, or not to use, CT scans in the routine clinical evaluation and monitoring of patients with this disease.
With that as a lead-in, here is the abstract of the Byrd paper. You can access a free copy of the full text of the paper just by clicking on the link. Even if you don’t read it right away, this paper belongs in your own personal library of important papers. You may need it someday as you discuss these issues with your own oncologist.
J Clin Oncol. 2007 Dec 10;25(35):5624-9. Epub 2007 Nov 5.
Computed tomography scans do not improve the predictive power of 1996 national cancer institute sponsored working group chronic lymphocytic leukemia response criteria.
Blum KA, Young D, Broering S, Lucas MS, Fischer B, Lin TS, Grever MR, Byrd JC.
The Ohio State University, Division of Hematology-Oncology, Starling Loving Hall, Room B324, Columbus, OH 43210, USA. kristie.blum@osumc.edu
PURPOSE: National Cancer Institute-sponsored Working Group (NCI-WG) response criteria for chronic lymphocytic leukemia (CLL) rely on physical examination, blood, and bone marrow evaluations. The widespread use of computed tomography (CT) scans has prompted many to advocate for the incorporation of this test into CLL response criteria. PATIENTS AND METHODS: In a retrospective review of 82 CLL patients treated at the Ohio State University (Columbus, OH), we compared CT assessed response using non-Hodgkin’s lymphoma (NHL) response definitions with NCI-WG response. RESULTS: Responses by NCI-WG criteria included five complete responses (CRs), 32 partial responses (PRs), 21 patients with stable disease (SD), 17 patients with progressive disease (PD), and seven patients not assessable (NA). Responses by NHL-CT criteria included three CRs, 12 unconfirmed CRs (CRus), 16 PRs, 26 with SD, four with PD, and 21 NA. Using NCI-WG criteria, progression-free survival (PFS) was 27.3 months for CR and 11.4 months for PR. With NHL-CT criteria, PFS was 18.4 months for CR, 11.7 months for CRu, and 14.5 months for PR. In multivariate analysis, both NCI-WG and NHL-CT response correlated with PFS (P = .009 and .001, respectively). CONCLUSION: Current NCI-WG CLL response criteria are a significant predictor of PFS in previously treated CLL patients, with no additional benefit from the inclusion of CT scans. Although retrospective, these results highlight the importance of prospective validation of CT scans before routine inclusion in CLL response criteria.
PMID: 17984187
As always with CLL issues, the situation is a little ‘nuanced’, no slam dunk “yes” or “no” answer. But I see the balance tilting definitely in the direction of doing fewer scans, justifying the need for doing them before a knee jerk dependence on the high tech toys.
Which Type of Scan Works Better For CLL?
Below is a very recent ASH2009 abstract that compares the usefulness of CT scans (with or without contrast), PET scans and combination of CT and PET scans, across a spectrum of blood cancers.
Comparison of Contrast-Enhanced CT, PET/CT, PET, and Low-Dose Non-Contrast Enhanced CT Imaging of Diffuse Large B-Cell, Follicular, Small Lymphocytic/CLL, and Marginal Zone Lymphomas
Elise A. Chong, BA1*, Drew A. Torigian, MD, MA2*, Abass Alavi, MD3*, Jakub Svoboda, MD1, Anthony R Mato, MD4*, Sunita Dwvedy Nasta, MD1*, Lisa H. Downs, CRNP1* and Stephen J. Schuster, MD1
1Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA
2Department of Radiology, University of Pennsylvania, Philadelphia, PA
3Division of Nuclear Medicine, University of Pennsylvania, Philadelphia, PA
4Hematology and Oncology, University of Pennsylvania, Philadelphia, PA
Introduction: Anatomic imaging using contrast-enhanced computed tomography (CT) is essential for management of lymphomas. Functional imaging using 18FDG-PET (PET) improves detection of certain lymphomas, specifically, diffuse large B-cell lymphoma (DLBCL) and follicular lymphoma (FL). Currently, PET imaging is performed with co-registration of low-dose non-contrast enhanced CT images used for anatomic correlation and attenuation correction of PET images (PET/CT). It has been suggested that the low-dose non-enhanced CT cannot substitute for diagnostic contrast-enhanced CT imaging since the arterialand venous phases of contrast enhancement improve detection of lesions. Given the differential sensitivity for detection of specific lymphomas by PET imaging, we hypothesized that FDG could substitute for intravenous contrast in imaging of certain lymphomas, and that PET/CT or PET imaging could potentially obviate the need for contrast-enhanced CT. To test this hypothesis, we performed an independent and blinded radiology review of these imaging studies in patients (pts) with DLBCL, FL, small lymphocytic lymphoma/chronic lymphocytic leukemia (CLL/SLL) or marginal zone lymphoma (MZL) who had contrast-enhanced CT, PET, PET/CT, and low-dose non-enhanced CT available for retrospective review. Patients and Methods: Ptswith a diagnosis of DLBCL, FL, CLL/SLL, or MZL with PET/CT and contrast-enhanced CT studies performed at the Hospital of the University of Pennsylvania within 6 weeks of each other without intervening therapy were studied. Pts with clinically suspected progression of lymphoma between studies were excluded. Radiologists, blinded to clinical information or other imaging results, separately interpreted image sets of low-dose non-enhanced CT, PET, fusion PET/CT, and contrast-enhanced CT studies. The presence or absence of disease at 44 nodal and 48 (female) or 49 (male) extranodal sites was recorded for each site for each imaging modality. Concordant findings across imaging modalities were defined as positive for involvement by lymphoma; discordant findings were reconciled using all available clinical and radiologic information with follow-up for progression or regression of abnormality, or by biopsy. Results: Between May 2006 and January 2008, 55 pts with either DLBCL (n=31), FL (n=13), CLL/SLL (n=5), or MZL (n=6) had complete images sets available for review. All patients had at least 18 months of clinical follow-up after imaging. A total of 282 sites met criteria for involvement by lymphoma. The rates of detection for specific lymphomas by each imaging modality are shown below:
Conclusions: Our results suggest that combined PET/CT imaging is more sensitive than contrast-enhanced CT imaging for detection of DLBCL and at least as sensitive as contrast-enhanced CT imaging for detection of FL. In comparison, contrast-enhanced CT imaging appears superior to PET/CT imaging for CLL/SLL; while further studies are needed to confirm superiority of contrast-enhanced CT imaging in MZL. The routine use of both contrast enhanced CT and PET/CT modalities for staging of lymphoma may be unnecessary, potentially increasing both the cost of medical care and radiation exposure. Additional studies are needed to determine which imaging modality is optimal for each type of lymphoma.
I have simplified the table from the abstract (just a little, just enough to make it easier to read). Here it is.
Lets look at each of the four options (CT with contrast, low dose CT, PET and PET/CT) in turn, paying special attention to how the CLL/SLL patients benefited from the technology.
No question, CT scans with contrast were the most sensitive technology. Roughly 9 out of 10 times they did a good job. As you would expect, detection accuracy of CT scans was a lot better when looking at the nodal part of the disease, much less effective in the bit that is outside of lymph nodes. What does this mean for us chickens? If you have a more SLL type, if you have the FISH abnormalities (such as 12 trisomy, 11q and 17p deletions) that often go hand-in-hand with bulky adenopathy, CT scans with contrast are more useful in your case. If you are a 13q deleted patient with just about all the CLL cells cruising around in the blood, none of them showing any tendency to settling down and setting up home in the lymph nodes, CT scans with contrast are not going to tell you much. Remember, it is always a case of comparing risks and rewards. If the scan is not going to be all that useful in your case, why get the radiation exposure hit (not to mention health care dollar hit) of a full strength CT scan? Something to discuss with your doctor.
This paper says CT with contrast pretty much blows away all the other technologies. PET scans are of much less use in CLL/SLL patients. Low dose CT scans (without the toxicity and hassle of drinking bottles of contrast) are a tad better – but not quite as good as full strength CT scans with contrast. But if you are allergic to the components of contrast you may not have an option but make do with the lower sensitivity of a low dose CT scan – when and if you need it.
Guys, please don’t fall for the extreme positions. Do not throw the baby out with the bathwater. I cannot in good conscience support or validate your position if you swear you will never, ever, have a CT scan, come hell or high-water. There may be occasions when this is the only way your oncologist can get a good sense of the lay of the land and decide if it is time to treat, what to treat you with and judge how well you are doing so that he can fine-tune dosages etc. Be smart, never say never.
On the other hand, I know a couple of guys who have no-limit health-care insurance and get annual “executive” health check-ups. The latest must have fashion accessory of the super rich are “concierge” doctors who are willing to do whole body CT scans. Why would any healthy person in their right mind get this much radiation exposure just to satisfy their vanity? Don’t fall for the high tech solutions if there is no problem needing a solution.
One More Scenario Where Scans Are Mandatory
This is a tough one.
Many clinical trials call for one or more CT scans to stage patients accurately before, during and after completion of the new drug protocol under study. Sometimes this desire for detailed research information goes a little nuts. Researchers need to keep in mind that their human subjects are not lab rats with no choices. People can always vote with their feet. I remember one plaintive letter I got from the Principal Investigator of a clinical trial who was having tremendous difficulty recruiting patients. He could not figure why patients were staying away in droves. Duh! His trial protocol required five CT scans and three bone marrow biopsies.
I am all for increased participation of patients in clinical trials. No progress is possible without well conducted clinical trials and dedicated volunteers that risk their bodies and lives in order to make things just a bit better for future generations. But, on the other side of the coin, we need researchers who are more sensitive to patient friendly trial designs. How the heck can they influence us if they can’t hear us, don’t care about our needs, forget to even thank us for participating in their clinical trials? Moral of the story, before you sign on the dotted line for any clinical trial, do ask how many invasive diagnostic procedures (scans, lymph node and bone marrow biopsies) are involved; and whether you have the choice of opting out of any of them. Some of the data collection tests are optional, a little detail you may not find out unless you ask. As a savvy customer, be sure to understand what you are buying into, before you buy it.
37 comments on "To Scan or Not to Scan?"
Very interesting article Chaya and much food for thought. In the two years since my diagnosis I have only had one CT scan done and that was done the day after my diagnosis. Since then there has been no mention of having another done although I will be having another FISH done in six months. This makes me perfectly happy!
I have felt uneasy about the CT scans with contrast my husband had in the short course of his disease. But, he did have bulky lymphadenopathy in his abdomen that impinged on a kidney. I am close to feeling better about it.
Chaya, I (a 54 year old male)too am concerned about what is too many scans. My wbc started going up in 2000. The doctors said we’ll watch it don’t worry. In 2005 I was diagnosed with melanoma on my left forearm and had surgery to remove it and a lymph node biposy. Since then and before finding this great site, I have had many pet scans to watch for more melanoma as it had ulcerated into the blood stream. In 2008 the doctors officially diagnosed my CLL. In April 2009 I found another melanoma on my left upper arm, two more surgeries. I am now going to the Siteman/Wash U cancer center to be watched for both cancers. I feel better going here as they are concerned about me having too many scans. Anyways, a person starts getting a little nervous, pet scans are bad for cll but they might find more melanoma. What’s a person to do?
Chaya,
I’m scheduled for a CT scan next month at the NCI. I am stage 0 and for last ten years have WBC starting from 14,000 to 26,000 today with all other readings acceptable…or as has been mention, “in the ball park.” The clinical trial is one you mentioned about eight months ago and I have since been there once for initial tests and now scheduled back next month.
I’ve read the articles above with interest. I haveen’t had a CT scan before, so, am leaning toward going through with it. However, I have also read the recent articles stating that CT scans are the equivalent of 1,200 chest x-rays etc. (Not sure on that number).
If you can shed any light on specifics in the article (or info elsewhere) that might be more definitive for my specific situation, I would be most appreciative.
I didn’t get a clarification for a yea or nay for agreeing/not agreeing to a CT scan nor, if so…what specifically would be the reason to/not- to have one. Also, any questions you might suggest I ask of the clinical trial doctors for any pros and cons using your title…”To Scan or Not to Scan.”
Many thanks in advance
WillB425
WillB425:
Please read our earlier article on this site titled “Does Radiation cause or make CLL worse?” There is a table in that article that compares the level of radiation exposure involved in many of the more common diagnostic tests.
As I said in the present article, many clinical trials require CT scans. They need the information to more accurately judge the efficacy of their drug protocol, or as in the case of the NCI trial, get a better handle on how the disease is progressing. There is no way of getting out of all the scans or even biopsies. A patient friendly design is one where they at least try to minimize the number of invasive tests required.
How to ask? Just ask. Tell them you want to know how many scans are involved, are they all mandatory, you would like to limit exposure if you can do it safely and still participate in the trial.
Chaya,
I am very grateful for the breakout of SLL information as so little is published about this ‘poor relation’ of CLL. Is there anywhere else I can look for SLL guidance?
qb:
You are so right about the “poor relation” bit. Most oncologists just repeat the party line that SLL is just another version of CLL. Yeah, but it is sufficiently different in how it presents, the role massive nodes play in the choice of therapies and likely responses that I wish some one would do a for-real article focused on SLL. Sorry to say I have not seen such a review yet. If any of you out there are aware of an SLL review, please do me a favor and send me a link.
Chaya
From experience, I agree with the contents of this edition 100%. However, to fully understand all of the risks of treatment and testing (including scans), patients (and their families) need to be informed and need to be comfortable with their situation.
When I was initially diagnosed (with stage 4 cll), I was referred to an academic/research oncologist who was “heading up” a clinical trial for cll (the fcr-lite protocol). I felt absolutely horrible (as I was very ill). Also, both my wife and I were totally naïve about the disease, the treatment options, etc. – as I felt desperate. So, we put 100% trust in the physician and his clinical protocol (which required multiple scans and bone marrow biopsies over the life of the program). Not until after many months did we begin to become “educated consumers” and began to feel comfortable and confident enough to begin to ask questions and ask why. At that time, we began to “take control” and we made an informed/educated decision to change oncologists and also cease to be involved in/with continuation the clinical investigation. That was 3 ½ years ago!
So, my advice to newly diagnosed patients – while you may initially feel desperate: take your time/don’t rush into things, do your homework, get a second opinion and question everything!
Pittsburgh, PA
Hi Chaya:
Thanks, once again, for condensing this info so we can digest it clearly. Although we’re in the “wait” mode, we don’t want to be playing catch-up when we need to consider therapy. Honestly, if it were not for CLL Topics/Updates, I would feel quite nervous that we were getting behind the curve. After a long work day today, I couldn’t even remember our address to tell the can driver! A healthy dinner and a glass of wine later, I can read your updates calmly and know we are staying abreast of the current CLL landscape. Many, many thanks sweetie!!
Barb & Blair
My story may be instructive as to the dilemmas and situations one patient faced with regard to scanning.
I was initially diagnosed because of cervical(neck area)lymphadenopathy (small but multiple node swellings)and was in excellent health otherwise. Before being educated I submitted to the local oncologist’s order for a CT scan. 7 months later I was alarmed at indications of kidney involvement by falling Glomerular Filtration Rate (GFR)which I brought to the attention of my primary care physician (PCP) who in turn educated me to monitor the rising creatinine number as a more important indicator of kidney dysfunction. Creatinine peaked at 1.4 still in “normal” range by my lab that summer. When my Onc saw this, he ordered another CT scan for which my PCP urged me to get an Ultra Sound instead at my reluctance to get another CT scan. It was my PCP that informed me he was not so much concerned about the radiation as the Contrast that could further stress an already compromised kidney.
Why did the Onc want the CT scan? because nodes can grow to physically restrict or close a ureter. An Ultra Sound while not as detailed as CT can “see” a kidney threatening node. An UltraSound uses no contrast or ionizing radiation.
As my disease progressed it was clear in spite of being a 13q, CD38- and IgVH mutated all pointing toward smoldering good prognosis, that my CLL had not read the right books plus I had bulky nodes. During the period from Aug.’07 until Feb. ’09 I went through a revolving door of many (6) different Oncs plus one at the Buffalo VA some of whom wanted CT scanning and all of which I refused.
In the Spring of ’09 I knew I was going to need treatment within the year as I had a WBC climbing quickly toward 300k, a bulging spleen and nodes everywhere. Still free of any “B” symptoms and zero infections I signed up for the NIH CLL Natural History study for the untreated where I knew I would be scanned. The Docs at the NIH and I were wondering if I might have something going on other than CLL.
I consented to both a CT and PET scan at this point though I refused the IV contrast to try and protect my kidneys (cratinine still at high normal). In retrospect this turned out to be a prudent move on my part as I ended my first treatment after renal (kidney) failure from the 2nd cycle of Rituxan & Fludarabine in September ’09.
The PET scan was a reasoned decision to allow in my case because a PET could detect a “hot-spot” of higher metabolic activity in any of my numerous nodes. Fortunately all nodes revealed consistent CLL typical metabolic activity. This allowed me to contemplate treatment with less anxiety and to know treatment would be appropriate.
“What-Ifs” are usually useless conjectures but if had I taken the advice of all the Oncs (none CLL specialists)regarding CT scans, would my kidneys have held out as well as they did? This question’s answer is unknown but I am grateful for a good recovery from near death. If I did not have a PET scan and were treated for CLL when I might actually have had, say a Richter’s transformation in progress where would I be today? Fortunately this question was positively answered but in another situation might have been ignored with bridges burned.
Decisions as to when to scan are not always clear cut but in my case my nodes and I mean the physical bulk of them, made it clear that I needed treatment in the absence of “B” symptoms. I did not need a CT scan to tell me this and two noninvasive UltraSound scans gave good indications that whatever was going on with my kidneys did not involve pressing nodes.
Great topic superbly presented as always.
WWW
It may also be worth mentioning that doctors tend to understate negative effects in all treatments.
This may well be in their desire to proceed to help us, or perhaps in worst cases they want to play
with their new toys ‘because we can’. With CAT scans it will indeed provide them with lots
more information, the question as a patient is will that information lead to a significant change
in treatment, quality of life and survival rate ??
I was told several times that an X-ray is no more radiation than getting on a plane, which is true.
What they didn’t mention was it would be a long-haul flight of 25 hours – delivered in one second !
I was told CAT scans did give quite a lot more radiation than than X-rays – again true.
What they didn’t tell me was how much more – possibly 59 times depending on what you have !!!
I looked all this up on Wikepedia by the way.
To date, being a bit of a maverick, I have personally declined CAT scans, but I never say never, and
wouldn’t advise others one way or another. All we ever have as patients is a limited amount of
medical information and our own intuition with which we make decisions. The rest is in the hands
of providence. Best Wishes.
I am currently having ~4 CT scans a year for another type of cancer, so I have taken quite an interest in this topic. Someone has suggested that a whole body CT scan is worth 450 chest X-rays. That is a misleading statistic. What is important is not the dose delivered but the dose absorbed. The chest is mostly air, which the X-rays pass straight through, so the dose received is very tiny. Living in Denver for a year exposes you to the equivalent of about 60 chest X-rays. One abdominal X-ray is worth 75 chest X-rays.
Some people believe that there is no safe dose of X-rays, others suggest from epidemiological data that low dose radiation is actually beneficial – cancer seems less common in Cornwall where background radon is high.
While this point is still moot, I think it is best to avoid CT scans unless someone is going to act on the result. Certainly when things remain stable for a long time it seems sensible to reduce the frequency, and my next scan will be in April rather than March.
For CLL patients you are certainly right that a diagnostic CT scan is seldom required. Where exact measurements are required – when testing the effect of a new drug in a clinical trial, there may be a need, but increasingly end-points of trials are the absence of minimal residual disease in blood or marrow – the latter has been shown to imply that there is no nodal disease.
Oncologists should not treat CLL as if it were just another low-grade lymphoma – this always leads to overtreatment. Rai staging must be done clinically, not by CT scan. All the consequences of having stage I or stage II disease were determined when the stages were determined clinically. If CTY scanning is used then many stage 0 patients will be called stage I or II and given a worse prognosis than they really have. Kanti Rai agrees with this.
The only CLL patients who should have abdominal imaging at diagnosis are those with B symptoms or those with poor risk markers, but in these cases abdominal ultrasound is as good. It will detect large nodes (though small ones might be missed) and large nodes are the spur to treatment. The measurements are not so reproducible as with CT scans, but the sort of monitoring required for other lymphomas is not required for CLL – you have blood and marrow to monitor.
Terry Hamblin:
It gives me great pleasure to welcome you to our discussion forum. I hope you will continue to chime in now and then as the spirit moves you.
One of our members asked an important question to which I did not have a satisfactory answer. It has to do with the SLL phenotype. Do you know of any recent review papers out there that focus on SLL? You have one of the most amazing and retrievable databases in your head when it comes to all things CLL – I know, I have picked your brain often enough.
SLL patients get either of two knee-jerk responses. (1) SLL is just CLL by another name, no difference (2)SLL is quite often treated as if it were a lymphoma, start the guy off on RCHOP, ICE or some such concoction. Neither shoe quite fits. Can you discuss this issue some more for our members?
Welcome Terry.
Yes I agree us SLL-ers find it very difficult to get specific SLL information. Vertually all articles I read about Staging, symptoms and treatments give little or no recognition to SLL and much of the CLL targeted information does not seem to apply.
How lovely to hear that others feel the same.
Does anyone know any SLL experts in southern UK?
Keep up the good work Chaya; CLL Topics is invalueable to so many of us.
Chaya,
A very informative article. Thank you for all you do for cll patients.
Monique
Dear Chaya –
A BIG thank you for another excellent update. Whether or not to have a CT scan is an important consideration because of the radiation (and the IV contrast material).
I logged in to ask about the advisability of abdominal ultrasounds rather than CT scans for a CLL patient. From my research it seemed as though the abdominal ultrasound would be a viable alternative to the CT scan. Especially since the ultrasound does not have any radiation or use IV contrast material. Previously I could find nothing that specifically addressed this as it relates to CLL.
So I was pleased to see Dr. Terry Hamblin’s very informative response above come down on the side of abdominal ultrasounds.
Thank you Chaya (and Dr. Hamblin) for helping to clarify this issue.
Patti Kruse
Again I would like to thank Chaya and her family for the information they provide. I am able to talk inteligently with my Dr. because of the information I have here.
Having just seen the latest moive with Harrison Ford, I thought it was interesting to see how much work is done by researchers on specific diseases. I am so grateful for those people who have used their minds to find cures and while this movie was not related to CLL, I did realize how important it is for us to become involved.
I am so grateful for this site. Thank you for everything you do Chaya. I too am in the history trial for CLL at the NIH. I am so grateful because of the great minds involved in this trial. I realize that by letting them research me, that it may help others.
Chaya,
Thank you for the informative article. It certainly gives one a reason to pause and think before we rush into doing what the doctor ordered. One more weapon to use in this fight we have found ourselves in. At times, less is best, will be the the correct thought.
Bill
I am so pleased to see the posting from doreensll. As confusing and frustrating as it is to deal with CLL, my oncologist said you have SLL so don’t read about anything that starts with ‘chronic’. Of course, everything I found said it was now believed CLL/SLL was essentially the same disease.
I was so relieved to find this site and have tried to carefully consider all of Chaya’s articles. Unfortunately, although I should have known better, I grabbed onto lifelines not appropriate to SLLers. Chaya could not be clearer that we are responsible for our own choices, guidance is not a directive nor absolute truth. She was generous enough to personally correct my confusion and suggest participation in the patient community- hence this post. Are there more SLL patients here that may be able to support each other? Is there actually such a person as a SLL ‘expert’ anywhere?
Thank you again, Chaya, for keeping us all in your thoughts and thus bringing SLL concerns to the attention of someone as reputable as Dr. Hamblin.
S.Morand
To qb, doreensll, and others that start with SLL.
My initial presentation was pure SLL – a solitary palpable cervical lymph node (biopsy positive) and a lymphocyte count of 2.8. I was also frustrated by not being able to find much data on SLL and did not like the fact that I was being clumped in with the larger CLL group. It was not very comforting to hear from the specialists that all SLL eventually turns into CLL; the unanswerable question is just how long that will take to become evident.
As I see it, breaking a disease into smaller subgroups is the first step in trying to come up with a better way to treat patients in that subgroup. If you do not recognize that a sub group (SLL) is different from that larger group (CLL), treatment cannot be tailored to benefit the sub group. From a practical standpoint, merely identifying a difference between SLL and CLL is of little benefit to a patient with SLL unless the distinction provides some advantage in terms of prognosis, treatment or survival.
Until recently, most SLL patients were just told to watch and wait until the disease progressed to the point were treatment was indicated using the criteria for CLL. Now that better prognostic tests are available and treatment options are expanding, it may make sense to approach patients who initially present with signs of SLL differently than patients who present with signs of CLL.
In retrospect, I would have been more aggressive in monitoring the growth of my abdominal lymph nodes with periodic ultrasounds. As Chaya pointed out, sometimes the growth of palpable lymph nodes does not correlate with the growth of the hidden nodes. In my case, I remained asymptomatic, the palpable nodes remained small, and my lymphocyte count remained low while my abdominal lymph nodes were expanding roughly to the volume of a volleyball. With that much nodal mass, you would think that it would be easy to notice. However, my weight remained constant and by belt size did not change over the 2-½ years of watch and wait. I remained very active, and had no adverse symptoms as the mass slowly grew in size.
I was 45 years old at the time of my initial diagnosis (+ CD38, + ZAP 70, unmutated IgVH, 3% q11 on lymph node biopsy but never found in marrow or peripheral blood) and was lucky to have a match with my only sibling. I would like to have had the option to start treatment when my disease was a little less bulky. I also would like to have had a better response to chemotherapy. Unfortunately, that was not the case.
At that point in my disease, incomplete data, theory, and hope collided. As I saw it, there were two competing evils involved with transplant; transplant related mortality (TRM) versus disease recurrence, also referred to as non-transplant related mortality (NRM). Some transplant centers advocate an approach that minimizes TRM and hopes to control NRM with manipulation of the graft post-transplant. Others are focused more on decreasing tumor burden (nodes less than 5 cm) prior to transplant in an effort to improve NRM. Only time will tell if one approach will prove more successful that the other.
Since I felt more comfortable with the approach that focused on limiting tumor burden prior to transplant, I was thankful to be able to use the data from CT scans to optimize my chemotherapy and timing of transplant (largest node prior to transplant: 4 cm). Given that lung and breast are more sensitive to radiation exposure than other organs in the body, and the fact that the nodes in my neck and chest were small, my oncologist supported an approach of limiting my CT exposure to the abdomen.
As far as my transplant conditioning protocol was concerned, I had two options. One approach was to use a standard protocol for CLL, the other was to use a protocol that at least in theory, might be more effective given my initial presentation of SLL and history of bulky nodal disease. The protocol included Zevalin, a radiolabeled monoclonal antibody more commonly used for lymphoma, with the hope that it might do a better job attacking the resistant abdominal lymph nodes.
I am now 9 months post-transplant and continue to feel well. My largest node at 6 months post-transplant was down to 1.6 cm. I have been lucky to have only mild GVHD symptoms, controllable with cyclosporine alone. In April I will be evaluated to see if any disease remains and find out if the theory has validity. Since I was the final patient in the Zevalin conditioning protocol, I would expect the results of the protocol to be released by the end of the year. Hopefully the results will be encouraging for other patients that initially presented with SLL and possibly another option for CLL patients as well.
Steve:
That has to be THE most informative and compelling reading I have seen on this thread. Guys, see what you would have missed if you had not logged on to see the discussion thread? You would not have seen Terry Hamlin’s take on things as well as Steve’s up-close and personal account.
I have been in touch with John Pagel at the Hutch – he is the researcher who is doing the chemoreduction followed by Bexxar clinical trial for CLL patients. We wrote about that trial a couple of years ago on http://www.clltopics.org. I will be publishing an update (in the next week or two) on that trial as well as the use of radioimmunotherapy ahead of transplant that Steve discussed above.
Thank you, Steven for sharing your valuable insights and experience. I shudder now to think I had 4 CTs (2 countries) within 6 months on my convoluted way to diagnosis and staging. While symptomless,I will now certainly be discussing ultrasounds with my oncologist for future monitoring but am still confused how SLL can be confirmed in bone marrow without evidence presenting in the other elements of the lymph system. If diagnosis is generally at stage 4, does that not suggest one should have retained the baggage of stages 1-3? I feel foolish admitting to such ignorance but best to get over it and get informed.
Given that my father presented initially with a 10cm retroperitoneal mass I will certainly pursue the best means to keep that area under close surveillance with the right tool.
As you said, a SLL/CLL distinction without a beneficial difference in treatment is of no use so I hope other SLLers may share their information as generously as you have done.
May I also ask Chaya how to understand Dr. Hamblin’s comment:”..but the sort of monitoring required for other lymphomas is not required for CLL – you have blood and marrow to monitor.” If SLL monitoring cannot rely on blood testing, how viable an option is biopsy- what interval is reasonable (if at all)- for symptomless patients?
S. Morand
Thank you for the summary of these articles. It makes me even more cautious.
Another risk factor is related to those with CLL who also have diabetes. Be sure if you are scheduled for a CT scan with contrast, that the facility is notified in advance so they have the contrast on hand that is said to be less kidney toxic.
We take the responsibility to insure the information about diabets and the Rxs to treat it are understood by the imaging center. We learned this after a hospital had not ordered the special contrast, causing a long delay until the obtained it.
Procedure instructions from the imaging center should detail how many days to discontinue Metformin or Glucopahge, sometimes before the scan and especially afterwards.
Linda Lee
ABCNews.com just did a feature on CT scans and has a large collection of recent features on it. If you go to ABCNews.com and put in Radiation Exposure you’ll get a long list of printed and video online reports, including tonights feature.
Concerns include comments by Dr. Rebecca Smith-Bindman who is listed as a visiting research scientist at the National Cancer Institute. (She is also a professof of radiology at the Universithy of California-San Francisco Medical Center. Referencing CT scans, she’s quoted as saying…”we don’t have a good sense of what’s going on [in hospitals].
HIGH FIVES to Dr. Hamblin on pointing out comparison between CT scan and abdominal ultrasound vs blood and marrow minitoring, not included in a CT scan. PLUS everyong contributing above…so much to mention and so little space..many thanks to all.
Chaya…ditto-thanks for helping us understand it a little bit better.
WillB425
Well thought out factual article as usual Chaya – thanks.
My own experience is, 2 years ago my consultant changed, and the new one wanted to put me on FCR (I had previously been on single F). Naturally I said, “Why FCR if F worked?”. I’d had a CT scan for the first time, and one look at the results convinced me to have FCR – lots of enlarged nodes. And I did, and apart from a Shingles episode I have been in remission ever since.
The haematology team appreciate need for prophylactic antivirals now (!!!) but I think I was one of the first FCR patients, and it has certainly been good so far. The team themselves are in no hurry to carry out unnecessary tests, but I think they do a good job – and that is in rural England away from the big cities.
So my point is to support yours – as a patient, question the need, but if the need is there DO go for CT with contrast – it provides valuable evidence when you are some way into the disease.
Thanks again
Lawrence
(Cornwall, UK)
QB:
I was diagnosed with SLL in June of 2004. Since that time I have been frustrated to find that there is very little out there that talks specifically about SLL. Usually when I find an article it mentions that CLL/SLL as the same disease.After that mention SLL is pretty much left out of the discussion. After 5 1/2 years I know a lot about CLL but very little about what exactly makes SLL tick.In the beginning I had 5 scans and 3 x-rays in the first year. I know that they were necessary to see if that chemo was doing it’s job. Still, as a radiation worker- who knows the risk of radiation- I worry about excessive radiation and the higher risk lung and thyroid cancer. When I ask the Rad tech about the whole body dose I can never get a straight answer. The standard theme is “Well its within the safe dose limit.” ?? Currently I have an annual scan. Since I feel fine I wonder if even that is to frequent.
Personally I tend to disagree that CLL and SLL are exactly the same disease.In my case in 5+ years my CBC has never shown any evidence of CLL and my LDH level has never exceeded 200-and that was during chemo. It typically runs about 120.My absolute Lymphocyte count has never exceeded 2.2. I am asymptomatic and feel fine. While all that seems well and good, because of some enlarged lymph nodes(2-3 cm) above and below that diaphragm at the time of diagnosis I was staged at stage 3.
Sometimes I feel is frustrated because I would like to understand more about why my disease is what it. So far I have found nothing that really goes into any detail discussing SLL and about why I don’t fit the CLL paradigm. Hopefully in the next few years there will be a study that is more directed toward SLL patients.
Be well
Scotty
I forgot to mention in my last post that back in 2004 I had a lymph node biopsy and that confirmed that I had CLL/SLL type. My markers are CD5,CD20,CD23. I do not have the CD 19 marker that I have read is typical in many CLL cases. I had a lump in my neck that had been there for 30 years. My GP told me that he thought that it probably was a cyst. Since it had been there since the late 70’s I thought that he was probably right but because of my previous diagnosis I asked to have it biopsied. The biopsy showed that it was actually 2 lymph nodes that were sitting on top of one another. The biopsy also stated that I had CLL/SLL type.This leads me to believe that I have probably had SLL for somewhere on the other side of 30 years.Over that time I have never had any symptoms or signs of SLL and my blood work has always been fine. My SLL was discovered while trying to deal with a substernal thyroid goiter.Had it not been for the thyroid problems I might have never have known about the SLL.
Good news for you SLL type guys.
At my request Dr. Terry Hamblin has agreed to write a short article for publication on “Updates”, detailing the differences between SLL and CLL. I expect he will also take quetions that arise in our discussion following his article.
I am in the process of formatting the article. It will be up on our website fist thing Monday morning.
Did you know early stage SLL is actually curable? I did not know that.
Chaya
Thanks for requesting more information about SLL.I’m looking forward to reading it.
Thanks for all that you do to keep us informed.
Scotty
Chaya,
What a blessing you are to all of us. I just checked back to this topic and can hardly believe that you and Dr. Hamblin have already tackled the queries about SLL. I will be so grateful for any clarity that you can provide and can’t wait to read Monday’s article and responses.
I was in w&w for 10 years, during which I had only a couple of CT scans. In 2008 I had first treatment. Due to bulky cervical nodes and tonsils that looked like golf balls, they recommended a biopsy (general anesthesia,)which thankfully ruled out Richters tranformation, but required FCR. I had 3 cycles, but due to neutropenia and fast reduction/elimination of nodes, did not continue. I went through the usual post- testing, including bone marrow biopsy and counts, bloodwork, etc, plus CT scans.
To my surprise, the oncologist wanted to update the CT scans every 6 months, to which I protested and convinced him to change to ultrasounds instead. I based my arguments on my meager research on radiation, which did the trick, but now we have this article and the corresponding papers to rely on. I have been doing abdominal and cervical US every 6 months since then, and clinical evaluation, bloodwork.
I have been doing very well, and only slight increase in cervical node size.
I still think as rule of thumb that less is more. Last century people were having feet X-rays in order to fit shoes! –because they did not know any better. What do we know about ultrasounds? (Rhetorical question -I have not done my own due diligence to be comfortable with tests every 6months)
Thanks for the great article. Thank you Dr. Hamlin for your contribution.
WillB425
Sorry I hit the wrong button above. I recall X-ray technicians and nuclear workers wearing film badges. They were used to measure the amount of radiation they received at work. In those days, the film was sent weekly/monthly?? to a lab for development. However dark the film came out determined the amount of exposure. Don’t know if anything like a film badge is placed on patient as they get their CAT Scan but might not be a bad idea, with the film badge being sent to lab for development after each scan. Maybe there is something more recent that would measure incident exposure. However, from the information out there it’s a catch-as-catch-can. Of course equally important is the settings being set before the actual scan to verify that the right amount of exposure is being used…then verify it with a film badge type device. If all else fails bring your own film badge.
WillB425
WillB425:
That is an interesting thought about giving patients film badges to monitor their accumulated exposure over time. It is a good idea, I wonder why we have not heard anyone exploring it up to now. You will be happy to know that there is now a strong push to reduce radiation dosage and patient exposure in many of the commonly used (over-used?) diagnostic tests. I am sure there are many ways in which they can gradually nickle and dime the levels – every little bit helps in reducing the total exposure. Pity that they did not get around to doing it up to now.
My husband had a CT scan with contrast this week (prior to his beginning treatment), and 2-quarter-sized areas showed up on his liver.
The doc believes it is from the CLL and that the treatment will eradicate them, although he said it is unusual to see them so early after his diagnosis (which was less than a year ago). They are going to do a repeat CT scan in two months, and if they are still there, he will have to get a biopsy. He said doing the biopsy at this time would be unnecessary as there would be no liver symptoms from spots that size.
His spleen is about 12 cm (we were told normal was about 8cm) and he has numerous grape-sized nodes throughout the body. Anyone have any info on the liver issues?? Is this common??
budgie:
CLL infiltration of the liver and spleen are well documented in clinical literature. “Splenomegaly” and “hepatomegaly” – referring to swollen spleen and liver respectively – are used as staging criteria in CLL.
But it sounds like your husband is in early stage liver involvement. And I know patients with much larger spleens as a result of CLL infiltration. Most of the time physicians judge the level of splenomegaly by physical exam, poking around.
Treatment to attack the underlying CLL will also help control spleen and liver issues. Another approach to dealing with really swollen spleens is a splenectomy – srugical removal of the spleen. There are pros and cons of this procedure and we discussed them in a previous article.
Thanks Chaya–I knew the spleen was common, but hadn’t seen much info about the liver. I think we are still somewhat in shock over the acceleration of the this whole thing since his diagnosis last July. Prior to that, my husband did not have a single health problem. Repeat bone marrow was done yesterday, and we should have more particulars soon. The liver itself really isn’t enlarged–there are just the two areas within the liver that are questionable. His liver enzymes are all normal…hopefully it’s just a fluke.
I wonder if another valid reason for a scan might be weight limiting the ability of a doctor to check lymph nodes. My husband was diagnosed in September – clear diagnosis on the comprehensive blood tests – 43.9 WBC (86% lymphocytes) which seems to be increasing rapidly, restricted CD5 positive B lymphoid population, positive for CD19, dim CD20 and CD23. The oncolologist could feel the lymph nodes neck and armpits were enlarged – but my husband is quite overweight (almost 300 pounds). I suspect she ordered CT with contrast within the first couple of months because she couldn’t check any other nodes. Even after the scan showed a 2.6 cm enlarged lymph node in right external groin region which she expected to be able to feel, she couldn’t reach it to check it. She wanted to use that one for measuring increases, but had to settle for the one in his neck. Given that the scan showed multiple enlarged nodes throughout his abdominal and pelvic region (but liver and spleen normal) – and she could check only a limited number of nodes – I think it was worthwhile in his case. I’m just trying to get up to speed and may have mangled some terms, but I suspect they will become very familiar soon.
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