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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?
COMMUNITY LEADER
"see a new hematologist "
good :)
"Do you know anything about the mediastinum thing from ct scan?"
I'm guessing that's part of what makes this the Multicenter type of Castleman's - it's not just in one place. The spleen is another place where you have it. Also maybe the "two 2.1 cm low density ovoid structures in pelvic wall".
But one thing is that the type of immune cells in the thymus are a different but similar kind. The thymus has T-cells, while the lymph nodes have B-cells (and the plasma cells that develop from B-cells). Still, Castleman's, can invole T-cells, too -- while a B-cell lymphoma won't involve T-cells.
"Aside from possible castlemans do u think it could just be slow grade lymphoma?"
Yes, but that's the less likely possibility. Remember that they didn't find any cancer cells in your FNA or in your bone marrow biopsy.
"a spleen that's swollen over a year is a sign of disease"
A doctor only cares about what are called "authoritative sources". Let's find one for a swollen spleen and Castleman's...
Here we go, you can print this and take it to any doctor, it's just the first one I found, from cancer.org:
http://www.cancer.org/acs/groups/cid/documents/webcontent/003093-pdf.pdf
Here is a quote:
"Multicentric CD can also affect lymphoid tissue of internal organs, causing the liver, spleen, or other organs to enlarge."
They also say:
In addition, people with either type of CD can have other symptoms (although these symptoms are much more common in people with multicentric CD:
• Fever
• Night sweats (that soak the sheets)
• Weight loss
• Loss of appetite
• Weakness
• Fatigue (tiredness)
• Shortness of breath
• Nausea and vomiting
• Nerve damage that leads to numbness and weakness (neuropathy)
• Leg swelling (edema)
• Skin rashes
Some of these symptoms might come and go over time.
good :)
"Do you know anything about the mediastinum thing from ct scan?"
I'm guessing that's part of what makes this the Multicenter type of Castleman's - it's not just in one place. The spleen is another place where you have it. Also maybe the "two 2.1 cm low density ovoid structures in pelvic wall".
But one thing is that the type of immune cells in the thymus are a different but similar kind. The thymus has T-cells, while the lymph nodes have B-cells (and the plasma cells that develop from B-cells). Still, Castleman's, can invole T-cells, too -- while a B-cell lymphoma won't involve T-cells.
"Aside from possible castlemans do u think it could just be slow grade lymphoma?"
Yes, but that's the less likely possibility. Remember that they didn't find any cancer cells in your FNA or in your bone marrow biopsy.
"a spleen that's swollen over a year is a sign of disease"
A doctor only cares about what are called "authoritative sources". Let's find one for a swollen spleen and Castleman's...
Here we go, you can print this and take it to any doctor, it's just the first one I found, from cancer.org:
http://www.cancer.org/acs/groups/cid/documents/webcontent/003093-pdf.pdf
Here is a quote:
"Multicentric CD can also affect lymphoid tissue of internal organs, causing the liver, spleen, or other organs to enlarge."
They also say:
In addition, people with either type of CD can have other symptoms (although these symptoms are much more common in people with multicentric CD:
• Fever
• Night sweats (that soak the sheets)
• Weight loss
• Loss of appetite
• Weakness
• Fatigue (tiredness)
• Shortness of breath
• Nausea and vomiting
• Nerve damage that leads to numbness and weakness (neuropathy)
• Leg swelling (edema)
• Skin rashes
Some of these symptoms might come and go over time.
Ok thanks! I'm gonna see a new hematologist too Bc this guy is too non aggressive and my pcp agrees. Do you know anything about the mediastinum thing from ct scan? My pcp said she was confused why hemo oncologist hasn't scheduled a biopsy but she would look into it, she said sometime thymus is still seen in adults but shrinks until 30 where it's undetectable but mine has increased in density over passed year but not size could that be anything to do with lymphoma or castlemans? Aside from possible castlemans do u think it could just be slow grade lymphoma? My pcp said a spleen that's swollen over a year is a sign of disease Bc there is no infection and according to my onc he said he had never seen such a thorough work up before
COMMUNITY LEADER
Okay, lots going on here... I am guessing that you have Multicentric (in more than one spot) Castleman's. Not the one-spot kind.
I don't know a lot about Castleman's. It is rare, so not many docs know a lot about it.
There is the subtype that has the HHV-8 virus in the nodes. The virus apparently stirs up a lot of the inflammatory signalling chemical (cytokine) called IL-6. The IL-6 flareups stir up a whole lot of inflammation, but then there can also be calmer periods.
Then there is the subtype that has no HHV-8 virus involved. The cause of that one is a mystery.
The inflammation in the node is like a battle inside - so then there is a lot of resulting 'debris' there. A lot of debris leaves little room for actual live cells - that's 'low cellularity'.
Castleman's also results in 'proliferation' (multiplying) of immune cells called plasma cells. Plasma cells normally make 'globulins' to fight infection. (A globulin looks like a tiny Y-shape think that sticks to bacteria, e.g. and marks them for destruction.) But in your case, things are running amuck and globulins are being produced willy-nilly -- that's all associated with terms like 'lambda' and 'light chain' and "IgM protein".
"mild aniso and poikilcytosis under blood smear portion" Anisocytosis means the sizes of your RBCs varies too much; poikolocytes means odd shaped RBCs; this is all part of your anemia. Castleman's can probably cause that.
I'd tell the surgeon that since Castleman's has some chance of turning into something worse, then you need the biopsy ASAP. They will likely discover that you do not have lymphoma and then diagnose you with Castleman's. That's probably the best result to want here. Then you probably take steroid pills as treatment to suppress the inflammation.
That's a lot of terms to wade through. But if you make the effort to learn them, then your talks with doctors will go much better :)
I don't know a lot about Castleman's. It is rare, so not many docs know a lot about it.
There is the subtype that has the HHV-8 virus in the nodes. The virus apparently stirs up a lot of the inflammatory signalling chemical (cytokine) called IL-6. The IL-6 flareups stir up a whole lot of inflammation, but then there can also be calmer periods.
Then there is the subtype that has no HHV-8 virus involved. The cause of that one is a mystery.
The inflammation in the node is like a battle inside - so then there is a lot of resulting 'debris' there. A lot of debris leaves little room for actual live cells - that's 'low cellularity'.
Castleman's also results in 'proliferation' (multiplying) of immune cells called plasma cells. Plasma cells normally make 'globulins' to fight infection. (A globulin looks like a tiny Y-shape think that sticks to bacteria, e.g. and marks them for destruction.) But in your case, things are running amuck and globulins are being produced willy-nilly -- that's all associated with terms like 'lambda' and 'light chain' and "IgM protein".
"mild aniso and poikilcytosis under blood smear portion" Anisocytosis means the sizes of your RBCs varies too much; poikolocytes means odd shaped RBCs; this is all part of your anemia. Castleman's can probably cause that.
I'd tell the surgeon that since Castleman's has some chance of turning into something worse, then you need the biopsy ASAP. They will likely discover that you do not have lymphoma and then diagnose you with Castleman's. That's probably the best result to want here. Then you probably take steroid pills as treatment to suppress the inflammation.
That's a lot of terms to wade through. But if you make the effort to learn them, then your talks with doctors will go much better :)
Also they sent me copy of fna report which says lymphocytes 21% : bcells 1-2 % very few detected possible excessive lambda but too few for conclusive light chain assessment and no definite light chain restrictions based on detected events.
Granulocites 13%
Monocytes 2%
Cd45 neg events debris 64% no significant reactivity within markers tested.
Under comments it says the sample cellularity is VERY low. Correlation with clinical, laboratory and mirphologla data is reccomended.
Granulocites 13%
Monocytes 2%
Cd45 neg events debris 64% no significant reactivity within markers tested.
Under comments it says the sample cellularity is VERY low. Correlation with clinical, laboratory and mirphologla data is reccomended.
Bone marrow asp said normocytic with mild aniso and poikilcytosis under blood smear portion
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