Hi, all. I am still in W&W. But just wondering -- did most folks on here who are in treatment get an enlarged spleen before they started treatment? (My platelets are down--130 -- and my red blood cells a tad low for first time. And doc mentioned word "treatment" but also said I have an enlarged spleen which I challenged and he palpated and backed off. So wondered how significant not having an enlarged spleen can be in the progression process. Thanks, D
PS Going to see different expert tomorrow, taking train up to see Dr. Cheson in Bethesda.
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Vlaminck
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My platelets were 210, my spleen was enlarged, and my lymphocytes had doubled in 60 days in May. I started treatment the next day. The excellent new treatments mean that it is much better to start treatment too early rather than too late. My red numbers were good in April and not good in May.
My spleen was enlarged enough at diagnosis to be tippable by my diagnosing specialist and two doctors in training, who were asked to estimate how much below my rib cage it protruded. That enlargement (splenegomaly), subsequently confirmed via a CT scan, along with bone marrow involvement causing severe neutropenia and thrombocytopenia, resulted in my stage 4 diagnosis. Treatment guidelines with respect to the spleen, recommend starting treatment if the spleen extends more than 6cm below your rib cage.
Splenegomaly wasn't the direct cause of me eventually needing treatment 11 years later, but probably added to the worsening anaemia from increasing bone marrow infiltration. (The larger your spleen, the greater amount of filtering out of red blood cells from your blood circulation.) My platelets were down into the low 50s by then, which I though was more concerning, but I needed a couple of packed red blood cell infusions and my platelets recovered after dropping below 30.
Some members have reported very enlarged spleens prior to starting treatment, but CLL treatments shrink them back to normal. Living with a spleen missing protection from our rib cage, puts us at higher risk of a ruptured spleen if we are engaged in contact sport or just from daily living (a fall, vehicle accident, etc.), so there's more of a risk of needing an emergency splenectomy.
My spleen didn't enlarge sufficiently in 11 years to get 6cm below my rib cage. My treatment triggers were thrombocytopenia, anaemia and days of high temperatures with no evidence of infection.
My broader question is how to feel about this doctor, yes, listed with CLL Society, and has nothing but 5 stars (only from 25 patients, they never asked me). This last visit, he looked at my results, sitting in chair not facing me, commented on my lower platelets (130 from 160 or higher), and my RBC just a tad low and said something about treatment. Then he came over to feel lymphs in neck, and said out of nowhere "and you've got an enlarged spleen," as if this were adding to his list to put me into treatment. I pushed back and said "but I don't have an enlarged spleen." He then palpated a bit and kinda backed off and his notes state I don't. My original, wonderful doctor (still listed, Michael Williams), retired 2 years ago and they dumped his patients onto this guy and, poor bedside manner aside, I think he may now be overworked. Maybe he mixed me up with last patient? But would that kind of error (you have enlarged spleen, when I didn't) make you want to see another doctor? And I would think docs would approach subject of treatment for a W&W patient with a tad bit of kindness, not like just reading off something. Thoughts?
It's about how you feel about the doctor. We could all feel something different. Some doctors are like weathermen, they get excited about the life of the meteorological phenomena they're tracking; hematologists love the numbers.
Personally, I want a precise surgeon as cold as ice. I need someone divorced from the person who is all about the skill, effectiveness, and ability to plan for the unexpected. Some other doctors I need a good relationship with so I can communicate.
You do bring up some good points about workload affecting them that day, but will that hinder their performance when it is treatment time, who knows? Some people work better under pressure and are not into small talk. Our CLL is big to us but to a doctor, eh, it's just something they do until it's time to go to work. 🙂🌼
Hmmm perhaps the "poor bedside manner" is from the increased patient load starting 2 years ago?
Regardless, if you aren't comfortable with a doc, you aren't comfortable. But please realize in other professions, people who have an occasional brain fart don't have their competence questioned. Have you ever had a brain fart/make an insignificant error, did your coworkers/bosses question your competency? I personally would want to see if it's a brain fart or if it is in fact a pattern of behavior.
My spleen never enlarged at initial diagnosis. Nor when I came out of several remissions. It enlarged stupendously when one study drug I was on, which *had* been working, started failing. So the spleen is significant *if* it's enlarged. Just another data point.
You will find that Dr. Cheson will have your blood work printed out. He will examine you first and then sit down and ask how you are feeling, what concerns do you have, facing you. He will then share your results with you and give his opinion on what is needed going forward, if anything.
thank you, CycleWonder. I'm in waiting room. Haven't done blood test, so guess they'll rely on those from Aug? Or maybe he'll have it done here and we can talk when I get back to town.
Great! If the train ride isn't too onerous, maybe you've found a good match! After 2 docs I liked (regional hem-onc who diagnosed me, then a study doc) I went through 2 more I wasn't really happy with, before finding one. He is another study doc and I am willing to drive an hour or so, over a mountain pass, to see. Happy to hear you seem to have found someone quickly.
it was an all day affair, leave on train early morning, expensive taxi, wait, see him (best part), taxi back to D.C., wait for train, then train home. Was almost exactly a 12hr trip door to door, and a bit costly. We didn't discuss his becoming my regular doctor (felt a tad awkward cause my current doc is at UVA where Dr. Cheson went to college, and he knew my former, better doc if not this one--he didn't make it awkward though). Instead, we left it that I would come see him again if treatment is looming (which it isn't now, according to him). He doesn't get worried re platelets, he said, until below 100. Such a pleasant, assured doctor. I told him of the positives about him on this site.
I consulted with various hem/onc's - some on the "recommended" lists, some not - until I learned the importance of a true CLL/SLL specialist. I resisted it for geographical convenience sake, as I asked each questions and educated myself on this disease. But in the process (and while in W&W), I got to see the different styles of each doc and got a lot of my questions (learning) about CLL/SLL answered, before time to treat. I felt confident in my hem/onc specialist and institution, when time to treat came.
Grateful I had a PPO insurance at the time which allowed me to "shop around", and the blessings of multiple CLL/SLL specialists in my area. Best to you!
An enlarged spleen does not always mean CLL treatment. It can get enlarged due to CLL provoking AHIA (auto-immune-haemolytic anaemia - finally I can spell that first time!). This is when the spleen is tricked by CLL into destroying red blood cells (so drop in reds and spleen gets clogged with the debris). Other signs are increased reticulocytes (baby reds), LDH and Billi. And grey pallor to face, yellow urine and yellowing eye-whites. If reds drop a lot, breathlessness
AIHA can be treated separately from CLL - usually steroid blast is first treatment which did not work in my case, so a splenectomy, which has given me 10 years and counting and still on W&W.
My current UVA doc, who said enlarged spleen, was totally wrong, as I told him when he said it. No enlarged spleen, confirmed by Dr. Cheson. Did he confuse me with another patient? Moreover, he doesn't do uric acid or LDH as prior doc did. Gonna ask for it myself this next time. What gets me is that he has only five stars on his UVA review page from 24 patients, no others (and no option for me to review and I have to wonder about this review page cause he doesn't fit the descriptions I see there). Did he pick the 24 to send the survey to?
don't put to much emphasis on the 5 stars and only 24 reviews .. most people don't give any review , the local oncologists near me only have 2 1/2 stars they are not leukemia ONC. so I never even considered them anyway .. what I do see is a trend for doc. reviews is that if the patient has a bad experience they are just as likely to post a review as a patient that has had a terrific experience .. I am glad you made the effort to get a second opinion .. the 12 hour day was well worth it to have the peace of mind from a good experience which I find is as much a positive influence on my CLL as my treatments... blessings , James
Thank you, James. I agree. By the way, there is no method I can fine to post a review myself--it's not open to reviews; therefore, I think they must have sent a survey to certain selected people from which this is gathered. Not only have I had not as positive an experience, but I dare say NO doctor is as great in all ways as these 24 reviews would indicate. Makes me even more uncomfortable with UVA in this department because it feels a tad dishonest.
Vlaminck, Not all specialists run all tests. My specialist never ran beta2 microglobulin, yet it was one ordered by a local hem-onc. My understanding is that it's useful at diagnosis to assess risk, and how it changes after that (in addition to other markers) may give useful data. It's now a recommended test while LDH isn't. I was well into this diagnosis when I found this specialist, and anyway this test wasn't available when I was diagnosed. I've also never had a ZAP-70, although some clinicians do use it.
I've only had uric acid checked during Venclexta induction. It's not necessarily a routine test for CLL'ers in W&W. Do you have any kidney or arthritis problems, are you at high risk for gout like family history of these problems, even if you don't have them? It's reasonable to do a baseline, and if you have a history of lymphs wavering up then down, it would be reasonable to think some CLL cells were dying off, and thus could affect uric acid levels.
If you've been stable, an LDH isn't something one necessarily "needs" to do. It's not in the recommended protocol that is recommended for treatment initiation or monitoring, just baseline. It's not specific to CLL, any tissue damage or disease can elevate it. So if it's checked only intermittently, outside of overt symptoms, it's unlikely to be super important that it wasn't done.
Hard to say if this doc only does them on patients with obviously active disease or in treatment. You can certainly ask to have them run. Ask ahead of time, so you don't have to go back to the lab for an additional poke; sometimes an extra test can be run, sometimes they only drew enough for the tests already ordered.
Thank you, SofiaDeo. I'm not faulting him for not running these tests, except, if you really are thinking treatment, then I would think possibly a bit more testing might be helpful,, like the LDH. I mentioned that as more an aside about my experience. I have never had a beta2 microglobulin test you mentioned that I know of and don't even know what that is. Lot of tests on here mentioned I haven't had. It was just the set up here at the same place had been to have LDH, etc. but no longer. Obviously, I'm not feeling full confidence.
I agree, something was "off"/miscommunicated, and it's no wonder you feel that way. I guess you have to decide to give him another chance, and if so make a point of asking "why do you say that" or "why aren't you doing the same labs Dr. Willams did?" etc. I'm also surprised UVA isn't soliciting patient responses post visit. Regardless, if you have a Google acccount you can always leave a review there, as well as on Healthgrades, Google account or no. If the 5 star reviews are on the facility website, well, of course they only put up the glowing ones.
Having 2 early docs I thought were great, then getting 2 not so great ones, and having a great local hem-onc leave to be replaced by another who spent our first appointment telling me things I was doing "wrong" (that my specialist was well aware of, and OK'd) I have an inking of your uneasiness. It's extremely uncomfortable if you don't have confidence in your doctor, or how they treat you. I hope you find a solution that sets your mind at ease again.
Thank you. Yes, I am in a situation where there is none other here. I do see there's another CLL society specialist in Richmond, an hour and some away. Might try him out at some point but for how have no choice but to stick with my (overworked?) guy.
My spleen was so enlarged that it pushed my stomach to the point that I couldn’t eat more than half a meal. BTW my WW ended with hospitalization for sepsis. Don’t postpone treatment if it’s recommended.
Hi off and on I have had an enlarged spleen, with pain whilst on W&W diagnosed in 2019.Since chemo for my lymphoma March to June 2024 I've not had any pain from my spleen. My white count was up to 289 before considering treating my CLL, but the lymphoma trumped it.
Yes. ! had an enlarged spleen and that's when I started on Brukinsa about 6 months ago. The spleen gradually returned to the correct size and location (under my ribcage) and now I'm still on Brukinsa and my numbers are slowly heading into the normal range. So far, my only side effect is mild fatigue...but, who knows at my age I should expect mild fatigue. Nevertheless, despite the meds, and 5 years of being on W&W I still walk 3-4 miles a day and lift weights at a gym five times a week. Nevertheless, I think of myself as immunocompromised and am extremely careful whenever I travel (which is nowhere as much as I did before my Dx). I think those of us on the BTK inhibitors are fortunate to have those drugs available..a decade ago we'd be knocked out from chemotherapy.
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