4.5 yrs out, 2 brief bouts peritoneal irritation, and Ca125 up

zsazsa1

Hello to all. Since I completed surgery, chemo, and radiation for uterine serous/clear cell, 1a but isolated tumor cells found out in one sentinel node (surgeon only took one sentinel node on each side), I have only come on annually, to report that I've had no recurrence of the uterine serous. (I do also have an indolent B cell lymphoma, called splenic marginal zone lymphoma.)

A couple of weeks ago, I had two strange episodes. I developed upper abdominal bloating, and then very severe generalized peritoneal irritation, so bad that I could barely stand up straight, and had to step gently because even the vibration of walking would hurt. I had severe pain like that for 24 hrs, improved over the next 24 hrs, then gone, then recurred a couple of days later, same course, none since. I had an ultrasound that showed only my enlarged spleen, but today I got back my Ca125, which had risen from 14 seven weeks ago (usually runs between 12 and 13) to 22 now.

There are so many variables,including my increasingly enlarged spleen, but I'm worried about a recurrence of the serous uterine. I had an MRI of abdomen and pelvis, with and without contrast this morning, am waiting for the reading, and comparison to last which was 9 months ago. I know that Ca125 is very non-specific, and that whatever inflammation I had a couple of weeks ago could have spiked the Ca125, without it being a recurrence. I also am getting over a bad cold, may have a bit of a sinus infection. I guess I just have to wait for the results of the MRI, and then follow the Ca125 and hope it goes back down.

Forherself

Good morning ZsaZsa1. I guess we never get over the worry. I am coming up on 5 years July 16. I am wary of any abdominal pains too. I remember you had quite a bit of abdominal radiation. I hope this is something related to that, and nothing more. Waiting is so darn hard! Fortunately your bloating and pain seems to have dissipated. Let us all know the results. We worry too.

MoeKay

Hi ZsaZsa, sorry to hear about your recent issues. I hope you get the results of your MRI very soon and that the results put your mind at ease. Have you had a chance to check in yet with the oncologist treating your lymphoma about the rise in your CA 125? The reason I ask is that I came across a study entitled "The Prognostic Role of Tumor Marker CA-125 in B-Cell Non-Hodgkin's Lymphoma." The study mentions splenic marginal zone lymphoma. It concludes: "CA-125 seems to be a useful and reliable tumor marker for monitoring a patient with NHL. It might be the time to consider CA-125 in staging, prognostic scoring, or decision making about NHL treatment." Here's the link so you can check it out: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4360350/

This is only one study from 2015, but I thought it might be worth a call to the oncologist treating your lymphoma to see if she/he has any helpful input on the issue.

All the best to you.

zsazsa1

https://csn.cancer.org/discussion/comment/1705690#Comment_1705690

Oh, thank you, I never thought that it could be late radiation effect. The radiation was below the belt line, and the bloating and pain were upper abdominal, but that's something to add to the differential diagnosis that would be a lot better than UPSC recurrence.

zsazsa1

https://csn.cancer.org/discussion/comment/1705693#Comment_1705693

This too is reassuring! I know that my SMZL is progressing towards needing retreatment, since my spleen has increased by about 3 cm in all dimensions, and my platelets are running in the low 70s. Thank you!

zsazsa1

MRI back, no evidence of recurrence of UPSC. Hopefully that increase in Ca125 is just from the indolent b cell lymphoma. Yet another piece in the puzzle of when to re-treat for the lymphoma. Thanks for the supportive and informative comments.

NoTimeForCancer

zsazsa, sorry to hear you are dealing with lymphoma but good news back on the MRI. As Forherself said, I don't think we ever really stop worrying, but as you showed us all, it is good to get things checked out.

Forherself

https://csn.cancer.org/discussion/comment/1705696#Comment_1705696

That is very good news. I hope the lymphoma is in check too. Thanks for checking back!

MoeKay

Wonderful news on the MRI results, zsazsa! Let us know what you find out about the status of your SMZL when time permits. Take care and be well!

ConnieSW

It was good to hear from you but sorry it’s because of worrisome conditions. Fingers crossed that all turns out well. Although the board is very quiet these days, it’s also wonderful to know that folks are still out there ready to jump in with ideas, info and support when needed.

zsazsa1

I just want to say that being back on here, and seeing some of the familiar names, has the warmth of finding old friends again. This thread format (as opposed to the FB groups) is so much more useful for researching info, and is filled with loving advice from friends still present and from women who have gone on ahead of us.

More info. I had a 3rd bout a few days ago, much worse, with bilious emesis. It only lasted about 12 hours at most, then I began to recover. But with this bout, I had some sudden concurrent swelling of my upper lip (medical term is angioedema). Bingo! Between vomiting, I researched intestinal angioedema (sudden episodes of swelling of the intestinal walls), and found that it can be caused by non-Hodgkins B cell lymphomas (which is what my splenic marginal zone lymphoma is), as a paraneoplastic effect (meaning that it is triggered by the cancer). So now I'm going back and forth with the oncologists about whether or not we should retreat the lymphoma now, even though otherwise it's not active enough yet to warrant retreatment.

Take home message for this board: Looks as if there has been NO recurrence of the uterine serous, 4 yrs 8 months out from surgery. There is most definitely hope of a cure for uterine serous, even more so with the additional of antibody treatments to the cytotoxic chemo and radiation.

Forherself

https://csn.cancer.org/discussion/comment/1705891#Comment_1705891

Well I am very happy that the serous carcinoma is not causing this. I am sure that you will handle this next challenge with your lymphoma. It is amazing that you found this connection with your angioedema, which helped rule out the serous. Onward. You are in my prayers. I will be 5 years July 16. These success stories are so important to newly diagnosed women. They were for me. Thanks for checking back in.

zsazsa1

I had my first dose of rituximab (an antibody treatment which kills B lymphocytes) to try to beat back the splenic lymphoma, antibodies killing my platelets, and antibodies causing the angioedema. So far, so good. Interestingly, I began an episode of horrendous abdominal pain with swelling that night, a couple of hours after treatment was over, but it went away spontaneously quite quickly, and no episodes since, so maybe it's working.

But the reason I came back on was that they repeated the Ca125 (last was done a month earlier, was up to 22, when for the last few yrs it had always been around 12-13), and it was stable at 22. I'm hoping that this means it was just from the abdominal irritation from the intestinal angioedema. I figure I'll get it repeated again in a few months, and am hoping that after a few months with no intestinal episodes, it will have come back down.

zsazsa1

Just had last of 4 rituximab infusions. No more intestinal angioedema, and the Ca125 today was down to 11. Clearly, the bump up must have been from the intestinal angioedema.