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Avatar universal

Possible indolent lymphoma? Help please

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?
41 Responses
Avatar universal
Anyone???
1081992 tn?1389907237
COMMUNITY LEADER
Hi, here is what seems to most tend *against* lymphoma:
you have severe anemia. Red blood cells can be low because of either  
a) abnormally low production of cells
or
b) abnormal destruction of cells

Your bone marrow biopsy showed no cancer cells in the bone marrow. (Lymphoma can cause anemia when the lymphoma cells invade the marrow and crowd out the good cells that produce red blood cells.)  So it seems that something is destroying your red blood cells - possibly some odd immune system condition.

Did you have a 'blood smear' done? They can get clues if any red blood cells are oddly shaped,

Your sonogram seems to be inconclusive.

So it sure seems that you should be having an excisional biopsy. Once they can directly examine cells inside a node, they can rule out lymphoma and also get clues as to what is causing the problems. The biopsy should be able to diagnose Castleman's disease, and the pathologist has to deliberately look for it.

Whatever you have is unusual.


1081992 tn?1389907237
COMMUNITY LEADER
Castleman's Disease centers around the immune system going haywire and secreting lots of the chemicals (called cytokines) that get the immune system overly active. It is *not* cancer.

I can help you look into this, if you like.


You do seem to possibly match up with the 'Multicentric" type of Castleman's.
http://www.castlemans.org/about

which includes autoimmune hemolytic anemia and enlarged spleen.

So I'd put on hold the excisional biopsy just for the moment, and instead demand an immediate blood test for the cytokine called IL-6. If your IL-6 is high, that points to (but doesn't prove) Castleman's.

Have you had the blood tests called ESR and CRP already?

You can possibly also ask for your FNA biopsy sample to be tested for the virus called HHV-8.
1081992 tn?1389907237
COMMUNITY LEADER
"autoimmune hemolytic anemia"

that means a person's own immune system is destroying their red blood cells
Avatar universal
Thank you for ur input! I have seen from other post you seem to be very knowledgable. I saw a surgeon a year ago Bc my onc suggested excision biopsy but the surgeon (only does oncology of neck head and chest) said he felt we should just watch Bc biggest lymphnode was only 1.6 cm and I would have a visible nasty scar and I'm young. However last week my pcp said it's time for biopsy now so I have apt in 2 weeks to see surgeon again. I believe they did blood smear with flow cytometry test last year and all it showed was granulcytopenia 77% lymphocytes. Which wasn't consistent with cbc, I know my bone marrow aspiration said something about the difference in size of rbc I'm gonna get them to fax me a copy of it. Also I didn't clarify but since iron transfusion I have been anemic per rbc it's always low side of normal range but my mchc is low and rdw high. As far crp it goes up and down last year it was a little high then normal then in oct it was 4.86 (0-.3) then two weeks later down to .6 so idk what that means but I was I'll in oct when it was taken. When I saw pcp last week they took13 tubes blood and she's re ordered every test again. My esr test is back and it's 15(0-20) last time it was 20. The fna showed possible excessive lambda but too little sample to be definite have u heard of this? Also the ultra sound saying hypoechoic rim and hyperchoic helium do you know what this means? Also the ct scan saying stable increased lobulated density of anterior mediastinum under findings it says impression residual disease vs thymic tissue have u heard of this? I just emailed my pcp about testing for castlemans awaiting her reply now. Also so etime when I'm very tired my legs give our and I fall my dr though maybe neurological or maybe just weakness but she's doing lyme test at my request but doesn't seem to think that's it. Again thank u for ur help
Avatar universal
Since transfusion I haven't **** been anenic
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