CLL-the unexpected-post splenectomy.

[GrannyMyers]

Finally got the husband home after 10 days in the hospital for his ruptured spleen. Seems to be getting along ok.. bladder was lazy so had to have a Foley catheter and of course has a JP drain in his abdomen. Got the call from pathology today and they said that there were mantle cells detected in the spleen. After the last flow cytometry it was decided that he “definitely “ has CLL. Now it’s up in the air again. I’m not sure but to me it would seem that a path report might be more reliable. We see the oncologist in a week. I guess maybe we’ll find out more then.

[GrannyMyers]

Also his spleen size was 27.3 x 20.8x 4.5 cm and weighed 3.9 pounds. It was a big one.

[81ue]

Did the spleen suddenly enlarge or was it slow over time?

[GrannyMyers in reply to 81ue]

Well in late November it was down to 16 cm. Hadn’t really noticed any enlargement after that but something was bothering his gut the week prior to the rupture. May have been leaking some then.🤷‍♀️

[81ue]

Well, that's quite scary, I'm glad he's home and recovering. I'm also curious why his doctors didn't catch this spleen issue at the initial diagnosis for CLL

[GrannyMyers in reply to 81ue]

They knew it was enlarged and his wbc count was just under 300000 at diagnosis mid September. He started on Imbruvica the 2nd week of October and it seemed like a miracle drug as his blood count was down to just under 12000 by January 4. He had to stop taking it Dec 23 because of a possible drug induced rash. There are some reports that stopping Imbruvica can cause the spleen to rupture in rare cases. It may have been the issue with him. I don’t know but will be interesting to hear the doctors take on it.

[PaulaS Volunteer]

Thanks for the update, GrannyMyers. As you say, it will be interesting to hear the doctor's take on it. I'll be looking out for your next update...

Wishing your husband a quick and complete recovery from the surgery,

Paula

[GrannyMyers in reply to PaulaS]

Well it is now 1 month since husband’s splenectomy. Catheter came out a week ago but the drain is still in place. Had another CT yesterday to check for a pancreatic leak because the drain amylase level is way high, over 56,000. Hoping to hear back from the surgeon tomorrow on that. Oncologist sent biopsy results to a major lymphoma site for their opinion on the mantle cells found in the spleen and lymph nodes. He probably won’t start treatment again until after March 1st at the next appointment. We hope to hear whether it is CLL, Mantle cell or could he have both? Dr just wants him healing until then but overthinking it all is hard for me.

[PaulaS Volunteer in reply to GrannyMyers]

Hi GrannyMyers, Sorry I missed your reply earlier. Not sure how that happened.

Things have been very complicated for your husband - very hard for both of you... I can understand how you tend to overthink...

I hope things are better now, especially re his possible pancreatic leak. Has he had a clearer diagnosis yet, re CLL or Mantle cell, or both?

Thinking of you,

Paula

[GrannyMyers in reply to PaulaS]

Thanks. He just got the ab drain removed yesterday. That’s a relief! We see the oncologist on Tuesday so hopefully we learn something more then.

[Judyanne]

I was diagnosed with sll until I had an excisional biopsy of my lung which showed marginal zone. I would think the pathology report is more accurate. My flow cytometry showed dim cd5. Cd5 is found in cll but rare in marginal zone yet all biopsies show marginal zone.

[GrannyMyers in reply to Judyanne]

Thanks. I think he may have crossover markers also.

[SofiaDeo]

When they did initial testing, was it just the "looking specifically for CLL" panel as opposed to a broader testing, looking for any & all abnormalities? Thinking this might be needed. It costs a little bit more but can be helpful. Plus, it's very rare, but CLL in blood/bone marrow with Mantle Cell in nodes has occurred.

pubmed.ncbi.nlm.nih.gov/125...

It's not fun/scary to have emergency hospitalization but may turn out to be a blessing in disguise, to find the Mantle Cells. And sending them out to the specialized center for extensive testing means they likely will figure out the optimal way to treat this.

Sounds like the docs wherever you are at, are paying attention!

[GrannyMyers in reply to SofiaDeo]

I’m not sure if the flow cytometry was a specific panel.. I know they’ve done a couple because they didn’t get done exactly what the dr wanted done. The last one did say it did not show cyclin d1 so it was ruling out mantle cell. The one before that said he had a couple of markers worrisome for mantle cell. Those were before the spleen incident. The biopsy did show cyclin d1 which is a mantle cell marker and mantle cells in the spleen and lymph nodes they took out.If you put all the markers in columns it looks to me like there are definitely more markers for mantle cell but I’m not the expert. It will be interesting to see what the new labs next week show. Getting rid of the spleen did significantly improve the lab work since the night of the rupture. I just want to know exactly what we are dealing with.