I had COVID-19 this past Dec.,I was in the hospital 5 days due to hypoxia. (post COVID) and a CT scan showed my Spleen is enlarged and pressing on my left kidney. My urine elimination has changed now and I have to "push" it out by tightening my muscles otherwise I can't urinate! They also found a kidney stone approx. 10mm on my right kidney.
My WBC,s have been rising for a few years, (57,000) and yet no chemo was needed. (I guess it's called indolent)
I haven't gone to my oncologist as yet, but was wondering if the spleen enlargement was from the COVID or the CLL? And I wonder if the spleen will go back to normal when the post COVID symptoms diminish? I know I should see my doc, but was wondering if this happened to anyone else. Thanks for any opinions. Take care all. ❤️🙏
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RandyM
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My spleen was enlarged until I had FCR. Then it went back to normal size. I know that a lot of CLL patients get enlarged spleens. I have not heard of that happening from COVID, but I have not had that so don't know for a fact.
Thanks Chris, I was hoping it would go away on it's own after the Covid problem. I guess I will need the FCR. Have a great evening and thanks for the info!
I presume you know that you can check the personal history of members of HealthUnlocked by selecting their avatar next to their post? (That's presuming they have completed it as you have done.) If you check Chris's healthunlocked.com/user/noe... you'll see that he had FCR in 2017. Treatment options have advanced so much since then that I doubt Chris would have FCR nowadays. That's why Poodle2 is asking you "Why do you want to go for FCR?" In the USA. only young people with mutated IGHV CLL would contemplate FCR, because there's a ~55% chance of a cure, provided you don't mind the ~10% risk of later developing Acute Myeloid Leukaemia or Myelodysplastic Syndrome. Modern targeted therapies are gentler and more effective treatments, though we haven't yet had enough experience to find out if long remissions, as can happen with FCR, is possible with them.
CLL Society also maintain lists of CLL specialists, which you can check out for local (or reasonably nearby) CLL specialsts: cllsociety.org/newly-diagno...
I totally agree with what Neil said above. The only reason that I had FCR was because there were not that many choices then and my oncologist said that with my markers, I should have a good outcome. I would definitely look into what other choices are out there.
By the way, FCR didn't do that good for me. It put me into the hospital for a week because my blood counts went down so low after the fourth month of treatment. I am in remission now, but with incomplete recovery. I get IVIG's every six weeks now. I am lucky to be in remission, but it was a very tough road getting there.
I just clicked the link you gave me for the CLL Society's Expert Access free video appt. with a CLL expert! I am very grateful that it is offered! I will sign up for it after my oncology visit to get another opinion. Thanks SO much AussieNeil.
Very likely due to your CLL and it must have been enlarged for a while without you knowing. It's a known symptom of CLL so don't be alarmed. It will go back to normal once you start treatment.
It depends on your blood counts, other symptoms and how big the spleen actually is. You don't necessarily have to start treatment when your spleen enlarges. Why do you want to go for FCR? You know there are other options too? Do you have a CLL specialist?
Thanks Poodle2! I need to find a CLL specialist to see my options. I have an oncologist, but I want another opinion. I just heard about FCR on some folks but didn't know I had better choices. Maybe nothing needs to be done at this time either. I still think the COVID had something to do with it.
Thanks for telling me I have other options. I thought my spleen might rupture and got worried. I will have my oncologist do another Ultra Sound and see if the spleen is reducing in size. I still think the COVID had something to do with it. I am recovered now, so will see if the spleen went back to normal. Having hope is a good thing. Take care and thanks for all the info! 👍😊
I only found out about my CLL this January, when I presented in hospital with neutropenic sepsis - with a side order of splenomegaly! But I think this was felt to be the result of the infection rather than the CLL (which was very active - I started treatment a month later). The good news was it cleared up reasonably quickly as the infection and general inflammation subsided. But it was really uncomfortable at the time.
My medic friend tells me that the spleen behaves just like lymph nodes when we get an infection, so if nodes are swollen then spleen may follow suit.
Greenbunnies (love your name!) Sorry you got the CLL too. The neutropenic sepsis you got must have been awful. I am happy your treatment worked! My nodes were never swollen and I never had symptoms of CLL except the high WBC's so I guess it's time for me to face the facts with my Oncologist. Have a good evening and thanks for responding!
When you have CLL the spleen usually enlarges as it starts "filling up" with CLL cells. That's what they like to do - bone marrow, lymph nodes, spleen, sometimes liver and of course your blood. The spleen gets back to normal size really quickly with some treatments (Obinutuzumab and Venetoclax) - they basically help to "flush the dead CLL cells out" into your blood stream (I think that's the way I understand it).
I had an enlarged spleen several years ago. It was due , in my opinion , to an extremely stressful situation. The situation resolved and my spleen went down without medication. I would let the doctor know what is going on. Good luck
That is exactly what I am hoping for me too! The spleen might have enlarged due to my COVID and stress too. The only way to verify it is to get another ultrasound to see if it reduced its size. Thanks for telling me about your spleen reducing by itself without treatment. It gives me hope! 👍🙂🙏
OMG that would be all I need! I will go to my doc ASAP to see what they can do to remove the stone. I wonder why I wasn't alerted to that when they saw the CT scan? Patients can't depend on docs following through with radiology reports! Thanks for the info. 👍😧
"They also found a kidney stone approx. 10mm on my right kidney."
Did they find a stone on the kidney or a cyst? I have a 4.9cm cyst (yeah, that big, but just there and not changing) on my kidney - it's one of the theorized reasons for my high BP.
If it's a cyst, you just leave it and watch it. If it's a stone that can block ducts, you need that shattered, so you can pass it (which will be pretty darn painful).
I have a stone, not a cyst. I guess I should have it removed. I heard kidney stones are not smooth so they would hurt coming out with ragged edges. Ouch! Can your cyst be drained or will you just live with it if it isn't hurting you? 🤔
Nope, the cyst just is. It didn't change at all from my CT in Sept 2020 to Nov 2022, so it's still just "check on it every CT I have" mode. It's not my only "wow, you have weird stuff on your CT" - it's why it's nice to have more than 1 CT done, so you can see you were just weird to start with. Anything that had zero change goes in the "no need to worry about this for awhile" category.
As for the stone, they don't usually "remove" it surgically. Normally, they shatter it (using a non-surgical option) and let it naturally pass in tiny pieces - thus, my painful part, b/c passing stones is painful, even if shattered...
Edit to add: Since I have my CT results, I decided to look at the language for the cyst and kidneys: "Stable simple left lower pole cyst measuring 4.9cm. Otherwise unremarkable." It's why I tell folks to ignore everything the CT spells out and just go to the "Impression" part b/c that explains what actually matters, which for my Nov CT was "1. Increased splenomegaly and 2. Otherwise stable exam" - aka, watch the spleen and don't sweat any other weird stuff here...
I'm glad you don't need to do anything with the cyst, I sounds very large! I had a friend who had a kidney cyst and the doc put in a drain because it was building fluid. The drain stayed in for a few years at least. I'm not looking forward to having the kidney stone shattered and the pain involved. My mom had her whole kidney removed due to a large stone! Maybe the shatter technique didn't work on her? She was 8 months pregnant at the time! I'll see what the doc says on my stone. So nothing is being done for your splenomegaly? You are so right about reading the radiology reports...just look at the conclusion. Hope you stay well MisfitK! 😊
Nope, it went from 13.7cm to 14.5cm...and it does not yet bother me, or affect my health in any way...so I'll probably have another test to check on it in a year or two (I actually got the repeat CT b/c of a few lung nodules that turned out to also be "stable" - my last CT said to come back in about 12 months, but I was doing well so we put it off an extra 12...and that category now also has a nice writeup, but in the end says "stable" and "no new or growing" - aka, nothing to worry about now, so ignore that til it changes)...
My spleen became enlarged and didn’t shrink until I began treatment. I would recommend seeing a CLL specialist now as suggested. FCR is not the usual treatment now - many new advancements have been made since 2017.
I would also see a kidney specialist to see about that stone.
You are 100% right CycleWonder. All this was found at the end of Dec. and I have been putting it off. I don't like going to docs unless it's urgent, and I guess precautions are in order. Thank you!
hi RandyM. Everytime I get an infection, or have a covid vaccine my nodes swell up then return to their previous size. However what I didn’t know was that I’ve had a very large spleen for years, which was not detected because my bloods were ok. I suppose most important thing is to find out exactly how big your spleen is from the CT scan. If it’s pressing on your kidneys it could be be pretty big, which can sometimes be an indication for treatment.
My spleen and fatigue were the reasons for starting treatment, and it was interesting to see my white cells start to zoom up just as I was about to be treated. Lucky!
Your oncologist needs to see this because you will be very prone to urine infections if something pressing in your kidney.
My spleen symptoms disappeared within one week of starting V&O.
You are right about finding out just how large the spleen is at this time. I was hoping it would get smaller after the Covid virus hit me. I had post Covid issues for a few months. Time for me to see my oncologist for another ultrasound to see if the spleen got smaller or larger. If he wants me to get chemo, I will go to a specialist first for a second opinion. I never had swollen lymph nodes and my WBC,s were only rising slowly (57,000 I think) so I never worried until now! I was borderline anemia a few years ago and he wanted to start me on Ritoxin and Bendamustine but I refused. My anemia improved on it's own anyway, so I don't trust him now. I will look into a renal doctor too. Thanks for your comment, and I am glad your treatment helped you! 👍😊
Hi RandyM. Sorry! V&O is venetoclax and obinutuzumab which is one of the new targeted therapies. They are more effective and no where near as harmful as the old chemotherapy. In Uk this regime was only allowed for first time treatment in December 2020. A lot of treatments were accelerated I think because of the need for more oral treatment during covid. Although there are monthly infusions for 6 months, it’s then tablets for approx 6months, and then finished!
Has to be monitored very closely at beginning but staff so skilled that they know exactly what to do.
Thanks for the info! I will mention this to my oncologist and see if I will get this if needed! I sounds safer than the older treatments I heard about. I am well behind the times with all the newer treatments, having CLL for around 12 years or so. Best regards Pearlpink and have a nice evening! 😊
I had splenomegaly gradually increase over watch-and-wait, and roughly tracking with WBC and ALC counts. My first year it was noticeable. My next six months it was a constant low-level pain. Then it accelerated to more significant pain and I was treated for stage I-II splenic laceration (tears in spleen) and infarcts (dead tissue within spleen due to lack of blood supply). This triggered CLL treatment discussion and I am now in clinical trial. Note my ALC was around 140 when this happened, and that number (and <6mo doubling rate) did not trigger immediate CLL treatment, but the spleen did.
My progression was somewhat abnormally quick, but that's neither here nor there on spleen issues. The main thing to take away from this is "if you are having spleen issues that are impacting your health, this is likely time to discuss treatment".
One way to measure spleen swelling is the distance the spleen reaches below your rib cage, where it could be impacted and damaged or ruptured. Mine was 6cm below at the time I was hospitalized, and 10cm below at treatment. If yours is impacting your kidney I would guess that it is in similar territory. Your CT scan will have specific measurements, and you should discuss with your CLL specialist.
They also can temporarily treat spleen swelling from CLL if this is a health issue. They put me on methylprednisolone for a standard 6 day course and it worked well as a bridge treatment.
Three months in to clinical trial and my spleen is better. Not 100% reduced, but pain is lower and it has gotten a bit smaller.
Thanks for discussing what happened in your case of spleen enlargement. I'm glad you are doing better now. Having tears and dead tissue sounds pretty serious. I am afraid of my spleen bursting. I guess I am at the "alert" point especially since it is pressing on the kidney. You gave me more reason to contact my oncologist now. I don't feel it under my lower rib though. I hope you get continued reduction in your spleen size. Have a great day and I appreciate your responding to my issue! 😊
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