Possible indolent lymphoma? Help please

[Veronicahazel2]

I'm gonna sumerize this as briefly as possible and I'm going to say on front end I have been to several drs including oncologist who are following me aggressively Bc of possible cancer. I'm not one of those ppl who feel a lump are just in panic mode posting. Here goes... I'm 26 female I had a baby 18 months ago I had a rough pregnancy and during second half was discovered I have severe anemia so bad I was hospitalized and nothing seemed to help it. During second half of pregnancy I started to develop horrible drenchung night sweats which I attributed to pregnancy and a couple swollen nodes. I just let it go then after  my daughter was born I felt like I got hit by a bus so tired 24/7 I ached everywhere the night sweats just got worse terrible pain in left side more swollen nodes. My gyn said it was hormones going back to normal. Two months later I go to gp she did cbc severely anemic still said that was it and made me feel nuts. Everything just kept getting worse so I got a second opinion now 4 months post delivery, internalist said my side hurt Bc my speen was swollen she did full work up and I did 7 rounds antibiotics total even though I had no obvious infection. I was tested for every auto disease and infection al neg. I have high blood protein but 6-8 months with several nodes still big she sent for biopsy fna ( I know bad test) said they didn't get enough tissue to be sure but looked like excessive Lambda ultra sound said of the one they took it from (really two were matted there 1.3 sm each in posterior cervical area) hypoechoic rim but hyperchoic helium. Pathology suggested follow up so my dr sent me to hemo onc he said the area they are in is worry some they re did cts and blood did a iron transfusion. The dr said he suspected indolent lymphoma and did bond marrow asp which was good but showed difference in size of rbc. He said my igm protein was high  but not myloma high but def abnormal and I had granulcytopenia in flow test. He said every 4 months he follows and scans me fast forward year later to now still have same swollen nodes night sweats fatigue side pain and now bladder fistula (prob unrelated) I had full gi work up nothing but strange inflamation in ilieum but no gi disease (had geno test). Had my scan last week my spleen has grown 1 cm from last scan now 14.5 (u can see from looking at my stomach) however so stones it gets even bigger (my dr has seen it) but always palpable and swollen. And scan said "again several stable shotty nodes seen in nevk region" and chest said stable but increased lobulated density of anterior superior mediastinum and two 2.1 cm low density ovoid structures in pelvic wall needs ultra sound to rule out necrotic nodes. Spleen more enlarged from last scan. My internalist has ordered full blood work up again Bc she said this is not normal and could be indolent lymphoma. Esp given spleen issues and location of nodes. Anyone with similar experiences or know what to make of this? Please ? Also on my onc paper work under diagnosis I saw term inc. castlemans disease does anyone know anything about castlemans disease?

[Ken_PA]

You still should want a biopsy. I'm at a loss to understand why they did a capsule endoscopy instead of one via tube so they could have snipped some sample tissue of anything that looked odd.

[Ken_PA]

Bingo, excellent thinking! You know, I always ask people with mystery immune conditions about their family history - but with all your testing to discuss, I didn't get to that yet. Now you must also research all your relatives, both sides - not only for Familial Mediterranean Fever.. which it's not even known yet if that's what she has. Could be a virus, because FMF doesn't cause high lymphocytes AFAIK. A virus can cause high lymphocytes and low neuts.

Also, expect to have trouble convincing some docs. Most just match symptoms and don't do much sleuthing.

So, we need to also figure out when to get you tested at a time when your CRP, ight be high. (You might have noticed that I'd said *sometimes* above, in the phrase "can sometimes have a low CRP".)

Current theory: you have the mystery kind of Castleman's - which might even be unrelated to the other kinds of Castleman's.

[Veronicahazel2]

So this may seem off topic but it's not my daughter has been really sickly on and off since birth I stay home with her but she gets sick a lot way more then normal baby her pediatrician says, she gets waves of crazy high fevers too like 104-105 and we were in hospital with her over weekend saw her dr today who wants her tested for cyclic neutropenia. I read up Bc I knew I had read that phrase somewhere and it clicked my flow cytometry test showed sever granulcytopenia but healthy cells then upon retest it was normal but my last three blood draws all exactly three weeks apart showed neutrophil percent low and lymphocyte percent high then my dr just rechecked Bc lym was high (8 days after last test) and it was high end of normal so let it go. But this disease makes sense I read in severe cases can cause spleen and lymphnodes to swell and causes ulcers in gi tract and mouth mimicking crohns. Aso I read it is most common among Jewish ppl and I'm half Jewish (my moms family is like off the boat Jewish). What do you think?

[Ken_PA]

"...which pretty much rules out castlemans or anything auto immune my dr says."

I don't know that I'd be satisfied with that. E.g.: "The clinical manifestations of MCD are heterogeneous..."
http://www.jhoonline.org/content/2/1/19

which means that *maybe* a patient with Castleman's can sometimes have a low CRP.  That's just a guess.


(I'll be back later.)  

[Veronicahazel2]

Also you said shotty nodes could be several causes, what are they? I can't really find anything online about that

[Veronicahazel2]

Update.. So got all my blood test back negative for any inflammatory markers, negative for lyme, no sign of infection, c reactive was >.1 (very low) ana negative, which pretty much rules out castlemans or anything auto immune my dr says. I have capsule endoscopy today to check small intestines for lymphoma or abnormalities. Spleen is more swollen today (very sore and hard to sit up right) so I guess were back to lymphoma.  My cbc was norm besides low mchc. I'm seeing a surgeon Monday on advice of obgyn they are most likely going to laporscopically operate to see what going on with pelvic masses and find origin of bladder fistula. Do you know any other cancer besides lymphoma to cause enlarged nodes and spleen (spleen been slowing growing for 18 straight months)