Enlarged spleen

[Mandy56]

I was diagnosed in 2010 with CLL. no symptoms, WBC around 30, platelets fine, as are red blood cells etc. I had a kidney infection in summer and my GP noticed my spleen was enlarged. My oncologist arranged a CT scan and said she would refer me to a spleen specialist. Yesterday I went to the hospital to be seen by a new oncologist, who said my spleen is so large we suggests starting to treat the CLL now with chemo for 6 months. I was poleaxed. Enlarged spleen can be caused by things other than CLL, but this doctor is intent on blaming CLL. He even admitted he had never seen someone with a spleen so big with my blood results. I need to get a second opinion/see a spleen specialist. Is this through my GP? Has anyone else encountered this? My spleen is 22cm. I'd be grateful for any help.

[Newdawn Administrator]

Hi Mandy,

I can understand your natural hesitancy on this because we do usually expect a noticeable correlation between a very enlarged spleen and impact on blood results, particularly red and white blood count and platelets. Do you have any of the symptoms associated with a large spleen?

You mention seeing an oncologist but not a haematologist and I’m wondering what additional tests have been done to eliminate causation.

I notice you suffered a car accident some years ago and a shot in the dark is wondering if some spleen damage was done then.

Like you I’d need some convincing to start treatment if blood counts are good and no symptoms evident. However, I’m not the medical expert and that’s what you need because I’m mindful that spleens can rupture and that’s a risk you want to avoid.

Best wishes and let us know how it goes. I have an slightly enlarged spleen too but not of those dimensions.

Newdawn

[Mandy56 in reply to Newdawn]

Thanks Newsawn. There are a couple of other things that might have caused it too, such as being knocked over at speed by my 6st German Shepherd. It was like being hit by a truck! Also athe fact I have found from a private test that I have a nasty growth of flora in my gut , which is being treated. I'm seeing my GP on Friday , so will report back. No other tests have been suggested thus far to find the cause.

[Newdawn Administrator in reply to Mandy56]

The kidney infection may also have a part to play Mandy. Take sound medical advice but I think I might be inclined to monitor it for a little while whilst further causes are investigated which sounds to be your preferred option from what you’ve said. Best wishes.

Newdawn

[pilantd]

When I was diagnosed with CLL my spleen had increased in size by about 30%. After my FCR treatment it only decreased in size by about 90% of what was expected. Enlargement of the spleen is a large part of the progression of the disease. I would listen to what is being communicated and I would take seriously the recommendations.

[mskids]

Hi, Mandy, An enlarged spleen is common (mine was 26 cm), though in my case I then also had a decrease in platelets. My white blood count never went above 30 but my platelets were down to 70. I lost 40 pounds last year and was treated with rituxan. I lost another 40 pounds this year. Now I am on ibrutinib and my platelets are increasing and the swelling in my spleen and lymph nodes has decreased markedly.

Regarding a second opinion, it can definitely help. I wasn't confident about the treatment plan that my doctor was offering since the treatment last year didn't last too long. Now, he was suggesting either BR or ibrutinib. He was basing all this on my blood tests which other than the low platelets weren't all that bad. I got a second opinion and was thankful for the reanalysis of my whole condition. Yet the treatment plan remained essentially the same--instead of BR the second doctor suggested FCR, but he also suggested ibrutinib. My health plan okayed ibrutinib and so that is the direction I took.

I know my first doctor was trying to progress slowly with treatment--from the least side effects to the most. That is why he was not recommending FCR. I just wasn't confident in his knowing my version of CLL because each one is different. My second doctor was concerned when he first saw me that I may have had the Richter's transformation and that really got me going for a while. Thankfully, the majority of the tests came out well, though one was approaching a cautionary marker.

I don't regret the second opinion even though I could have had the same treatment under both doctors. Previously the only major test that I had done was the FISH. In July, I had a PET scan, bone marrow test, and five other test reports. I am now more knowledgeable about my condition and also I have more tests to compare with as my CLL progresses.

So yes, seek another opinion! I still went back to my first doctor for treatment, but at least I knew better what I wanted in a treatment plan!

~Mark

[Mandy56]

Thanks Mark, that's really helpful.

[W00dfin]

Although my platelets and other vital counts were not in the danger zone, my WW ended when I contracted blood sepsis and had a rather scary 3 week hospitalization. They did not measure my spleen but it was crowding my stomach so much that I had a real decrease in appetite. About 3 days after my first FCR the spleen shrank so much that my appetite was great. So don't overlook any symptoms of opportunistic infections as you proceed.

Woodfin