Enlarged spleen with cll

[LeukemiaUp]

I was diagnosed with CLL over 15 yrs ago. My doctor told me that the results from my scan show an enlarged spleen. She says for the time being I will continue to monitor my bloods every 6 mths but she also hinted at possibly having a discussion about treatment options in the future. Has anyone ever had an enlarged spleen with CLL...what are the options?!

[BigfootT]

It's very common.

[cajunjeff]

Hello Leukemiaup. An enlarged spleen is quite common with cll. Cll cells like to gather in our nodes and spleens.

Just about any of the current first time treating options when your time to treat comes, such as Calquence, Venetoclax or obinutuzumab, will rapidly clear your spleen of cll cells and return it to normal size.

In the older days of cll, removing the spleen was sometimes done when other remedies failed. I think splenectomies for cll these days are uncommon.

The fact you have been in watch and wait so long suggests that your cll is probably indolent and slow growing. Indolent cll usually responds well to treatment with long remissions. Your enlarged spleen might never be any real issue for you.

I am no expert and your doctor knows best, of course. Good luck.

[alive2112 in reply to cajunjeff]

Thank you very much for that information. Means a lot the hear this. Well spoken and much appreciated.

[LeukemiaUp in reply to cajunjeff]

Thanks so much for that info. I feel relieved.

[wellbeingwarrior in reply to LeukemiaUp]

I had an enlarged spleen detected 2 1/2 years ago    LeukemiaUp along with internal lymphadenopathy detected on a CT scan.

No abnormal bloods outside of WBC/ALC, no prior treatment and have appropriately remained on w&w

[Pacificview]

Howdy!The question I have is this, is your spleen causing you symptoms? Some people have enlarged spleens for years and it does not bother them. For me a 15cm spleen forced me into treatment due to symptoms. Others have a 20cm spleen and no problem.

Is this spleen enlargement a new thing for you? Was it discovered by the doctors hands or CT Scan?

[St1968 in reply to Pacificview]

I had this spleen enlargement during the pandemic in a country outside my home country so I could not get treatment timely. The effects were manyfold:

- the spleen got large over 35cm*30cm, the spleen was 'visible' to the naked eye as a higher part of the left abdomen compared to the right body side

- the spleen pushed organs away resulting in a weight loss due to compressed stomach and reflux, which led to oesophagus inflammation

- after treatment started (Ibrutinib) the lymphocytes immediately went into the blood stream giving counts between 300 and 400, but this lasted only for few months. Therapy was successful and CLL and spleen retreated

Hope this helps. As said before: if it causes symptoms, I would consider a therapy. Waiting in this case will make things possibly worse (see above second dash)

All the best.

[New-bee-cell]

Yes, and the enlargement reduced significantly with treatment. It might be worth asking your nurse/doctor about the potential issues that can come up when one has an enlarged spleen.🙂

[W00dfin]

By the time I got to the first treatment (FCR) my spleen was pushing into my stomach so much that I couldn’t eat a full meal.

Best wishes!

[DanBro1]

I probably had CLL for years and didn't know it. When my nodes started becoming noticeable and CLL was confirmed, my nodes were large and so was my spleen. When I began treatment with Obinutuzumab and Venclexta, my nodes and spleen shrank to normal size. I've been in remission 3 years now.....

[jerryjerry]

My spleen got bigger during watch and wait. My treatment reduced it, but not all the way, even though I was UMRD. Now, six years later, my spleen is normal according to a ct scan.

[Kbcjones]

I have been on Watch and Wait for 13 years. My spleen is enlarged but doesn't give me any problems so my hem/onc doesn't feel it is a reason to treat.

[Lisa-1959]

My spleen got up to 23 cm, but it never caused me any trouble. According to the CT scan, it was pushing other organs around, but I never knew it. My enlarged spleen was one of the reasons my oncologist mentioned as a reason to start treatment, but I also had 2 hospitalizations in the previous 8 months (flu & double pneumonia then a bout of food poisoning that didn't want to go away), so all of those together plus my blood counts were the reason she started treatment. (Funny thing, when I and Ibrutinib didn't get along and I went to a CLL specialist at MD Anderson before making a switch to another medicine, that specialist said he wouldn't have started me on treatment just yet...wasn't really necessary.) Based on my very enlarged but non-symptomatic spleen, that alone would not have triggered the start of treatment.

[scryer99]

Can happen sometimes - CLL cells have to accumulate somewhere and sometimes it's the spleen. Can be "not a big deal" but there's a few things to watch out for. Spleen damage is not a good thing.

For more try this post and discussion: healthunlocked.com/cllsuppo...

Keep in mind that in this case my spleen swelling built up over 15 months vs. 15 years in your case. YMMV. If they still have you on a 6-month schedule it's not much to worry about yet.