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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
Come to think twice about it, maybe that is exactly what is happening with you: the blood pools in the legs, turns purple without oxygen, then when you stand there is not enough blood flow to the brain. You should probably check your feet regularly, and lay down if they turn color.
This new development is maybe a further clue to your overall problem - since your creatinine and BUN were probably normal, which says that you were not dehydrated.
This new development is maybe a further clue to your overall problem - since your creatinine and BUN were probably normal, which says that you were not dehydrated.
COMMUNITY LEADER
Some thoughts:
If the spleen was enlarged because of cancer, then the enlarged nodes would likely be also enlarged by cancer. So they could do a biopsy of one 0f those - much safer than doing the spleen. On the other hand, if the spleen is enlarged because of a benign, not-cancer lymphoproliferative disorder, then the nodes would also likely be from that same cause. Remember that subtype of Castleman's that is the mystery type?
It sure seems as if the center of your problems is in the reproductive system because that's when things started, reacting to hormones.
You must be talking about POTS - Postural Orthostatic Tachycardia Syndrome. That's not very well understood. When not from dehydration, then it can be sometimes because the veins are not returning the blood to the heart - the brain gets deprived of oxygen and you pass out. But that doesn't seem like it applies to you, either.
Did they give you compression stockings or Florinef?
You need to be very careful not to crack your head from a fall and get bleeding inside the skull.
If the spleen was enlarged because of cancer, then the enlarged nodes would likely be also enlarged by cancer. So they could do a biopsy of one 0f those - much safer than doing the spleen. On the other hand, if the spleen is enlarged because of a benign, not-cancer lymphoproliferative disorder, then the nodes would also likely be from that same cause. Remember that subtype of Castleman's that is the mystery type?
It sure seems as if the center of your problems is in the reproductive system because that's when things started, reacting to hormones.
You must be talking about POTS - Postural Orthostatic Tachycardia Syndrome. That's not very well understood. When not from dehydration, then it can be sometimes because the veins are not returning the blood to the heart - the brain gets deprived of oxygen and you pass out. But that doesn't seem like it applies to you, either.
Did they give you compression stockings or Florinef?
You need to be very careful not to crack your head from a fall and get bleeding inside the skull.
Thanks for input! Dr said actual fistula is not cancer but that the fistula could still be coming from inflamation caused by cancer. They said having a spontaneous fistula is pretty much unheard of that's why my uro wants me getting checked out by Gyno Bc it had been originally thought the uturus might have been sorce of inflamation. Is it normal to be producing more lymphocytes then neutrophils though? As far as what's next hemo said they wanted to send me to mayo clinic in Mn and do possible spleen biopsy there. Apparently there are only a few places in country that do them Bc they are very dangerous but I'm not going to let anyone touch my spleen unless it's a last resort. As for now I see gyn surgeon next week and pcp to get her prospective. My uro is from MD Anderson she know her stuff she just came from there here to take a job over urology at a huge hospital and teaching practice here. I trust her and she thinks I'm getting bad advice about spleen thing and she thinks that this uturus thing needs to be top priority. She had called all my drs and gyn before I even woke up after my surgery she actually seems to want to help me figure this out. Oh and idk if I posted this in update but I ended up back in hospital Sunday Bc everytime I would stand up I got real dizzy and my legs gave out and I would fall only I think I might have like been blacking out or fainting for few second Bc it happened 5-7 times and I can't remember anything but hitting the ground. Also my husband notice my toe nails were purple and my feet were ice cold to everyone but me and it was 75 degrees in my house. ER did a ostolic (sp?) bp test on me and it was positive meaning my heart rate was spiking and my bp was dropping when I stand only they couldn't figure out why they said normally dehydration only my blood work showed I wasn't. Have you ever heard of this? Oh and I have new lymphnodes enlarged in neck all my others are in posterior cervical region on both sides not symmetrical but this ones under my chin close to neck. Pretty big been there several week slowly growing not infection I been on cipro for three week and minocyclin
COMMUNITY LEADER
Well, I wasn't going to contradict several oncologists and say that they were wrong in insisting that you most likely have cancer. But I didn't think you have cancer and now the biopsy seemingly agrees with that. My guess is that you likely have some rare immune system condition - some non-cancerous benign lymphoproliferative disorder. The cervix and uterus, btw, are lined with lymphoid tissue - that is, lymphocytes that are not organized into a lymph node or spleen.
Usually the neutrophils are the most numerous of the immune cells. Here is a graphical presentation where you can see ranges for all white cells at once: https://upload.wikimedia.org/wikipedia/commons/b/b5/Reference_ranges_for_blood_tests_-_white_blood_cells.png
The fact that lymphocytes and neutrophils can be normal in absolute numbers, but out of range in percentages, is just a math thing.
What is next for you? What if the new hematologist tried anti-inflammatory treatment, to see if your symptoms get better?
Or maybe you should see an immunologist who would put more emphasis on your family history.
Usually the neutrophils are the most numerous of the immune cells. Here is a graphical presentation where you can see ranges for all white cells at once: https://upload.wikimedia.org/wikipedia/commons/b/b5/Reference_ranges_for_blood_tests_-_white_blood_cells.png
The fact that lymphocytes and neutrophils can be normal in absolute numbers, but out of range in percentages, is just a math thing.
What is next for you? What if the new hematologist tried anti-inflammatory treatment, to see if your symptoms get better?
Or maybe you should see an immunologist who would put more emphasis on your family history.
Oh that fistula is healing from antiobiotics and they cartelized the hole in my bladder. No fistula showed edema but no cancer. I def don't think it's virus since the first show of high lym was oct 16 but it's not over all high just percentage are there diseases or blood cancer that cause more lymphocytes in body than nuetrophils but both still in normal range
COMMUNITY LEADER
Do you mean that the fistula is healing because you are taking abx? Or that the abx caused the fistula?
No cancer found from your biopsy?
Lymphocytes typically go high during a virus infection and that can also cause low neutrophils. But I don't think your problems come from a virus infection, you are not typical.
No cancer found from your biopsy?
Lymphocytes typically go high during a virus infection and that can also cause low neutrophils. But I don't think your problems come from a virus infection, you are not typical.
Undate: bladder surgery showed edema and healing fistula (from antiobiotics) between bladder colon. Nothing else remarkable, however surgeon said cervix and uturus were grossly abnormal in appearence I see Gyno oncologist next week. However what I thought was cyclic in cbc is now chronic last 11 cbc show high lymphocyte percentange low nuetrophil percentage but the absolute numbers are normal with lymphocyte absolute being higher then neutrophil. What does it mean if percentage is chronically high but not absolutes. Is ur normal to have more lymphocytes that neutrophils chronically? What could this indicate?
COMMUNITY LEADER
Eosinopenia? I'd never heard of that actually happening. This paper http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2447615/ says it might be from the eosinophils moving to a site of infection and therefore out of circulation.
I've also never heard of lymphoma creating the *cyclic* neutropenia that you have. A B-cell lymphoma can certainly create antibodies that attack and destroy other blood cells, but I haven't heard of that being cyclical.
Your marrow biopsy showed abnormal red cells, but no cancer cells. Your node from the FNA showed very low cellularity but no cancer cells.
These things offer some hope that you don't have cancer. Maybe your new hematologist can make sense of all of that.
I've also never heard of lymphoma creating the *cyclic* neutropenia that you have. A B-cell lymphoma can certainly create antibodies that attack and destroy other blood cells, but I haven't heard of that being cyclical.
Your marrow biopsy showed abnormal red cells, but no cancer cells. Your node from the FNA showed very low cellularity but no cancer cells.
These things offer some hope that you don't have cancer. Maybe your new hematologist can make sense of all of that.
Oh ok also I I was comparing my blood work from last week three drs took it and hight lymph % low neutriphil % but both absolute in normal range but zero esobophils percent and absolute which is abnormal. Any thoughts?
COMMUNITY LEADER
A PET scan is typically done after you already know that a person has cancer and you want to find out where else it might have spread. It shows incerased metabolic activity but doesn't tell *why* there is increased metabolic activity - e.g. cancer or infection.
Another option is to remove the node that is the most suspicious and yet is easy and safe to get at - then examine whatever is in there.
Another option is to remove the node that is the most suspicious and yet is easy and safe to get at - then examine whatever is in there.
Yes it is I read that form those women have diff kind of fistula a though most caused my child birth and cause gas like normal fistulas mine was found on ct with no symptoms except infections caused but the decal stuff in bladder. Your right though the bladder biopsy will hopefully tell us something my pcp and gi dr want a gen surgeon in there to biopsy everything and remove several nodes but the uro surgeon doesn't want anyone in there too so I suspect I'll have that surgery right after this one , I don't understand why they just won't do a pet scan. I mean that will tell for sure if there's cancer right?
COMMUNITY LEADER
I'd ask on the Women's heath group, just repost your words from the cervical group but use a descriptive title, something like "fistula, endocervical canal, enlarged nodes"
Or maybe you should just take time off for now and conserve your mental and emotional resources for Wednesday. (I just typed out a whole lot of speculation but in the end that's non-productive guesswork so I'll delete it.)
I'm assuming that your biopsy is on the bladder spot. That should tell a lot and solve the mystery.
Or maybe you should just take time off for now and conserve your mental and emotional resources for Wednesday. (I just typed out a whole lot of speculation but in the end that's non-productive guesswork so I'll delete it.)
I'm assuming that your biopsy is on the bladder spot. That should tell a lot and solve the mystery.
Thank you for the link! No I think her pregnancies were normal, she died from gi complications. She had a dr mess up during a surgery for stomach ulcers and paralyse her stomach then it just spiraled from there. I don't believe there was any bleeding before having baby but hard to be sure, just very confusing as to what can causes spleen and lymphnode enlargement and fistula. My drs say only cancer makes sense then the UA I have had show blood and mucus which also has me alarmed. There are many cancers of abdominal area that can cause fistula but only lymphoma can cause the nodes and spleen. I'm hopeful the surgery wed tells us something Bc I'm starting to feel hopeless that will ever figure it out!
COMMUNITY LEADER
You might get something useful about the fistula from here:
http://www.medhelp.org/posts/Womens-Health/Vaginal-Gas-and-Fistula/show/27182
It's a long thread but you should be able to quickly bypass all the comments that are irrelevant to you.
Maybe your main problem existed before the pregnancy, was then greatly exacerbated by the pregnancy and went downhill from there. That Women's Health group might be the best place to try to find any similar experiences.
Did your mother have difficult pregnancies? What did she die from?
Also, is it possible that you have had periodic bleeding that was sufficient to cause severe anemia? It didn't sound like that was true in your past experience, until recently. Is it possible you had hidden bleeding?
http://www.medhelp.org/posts/Womens-Health/Vaginal-Gas-and-Fistula/show/27182
It's a long thread but you should be able to quickly bypass all the comments that are irrelevant to you.
Maybe your main problem existed before the pregnancy, was then greatly exacerbated by the pregnancy and went downhill from there. That Women's Health group might be the best place to try to find any similar experiences.
Did your mother have difficult pregnancies? What did she die from?
Also, is it possible that you have had periodic bleeding that was sufficient to cause severe anemia? It didn't sound like that was true in your past experience, until recently. Is it possible you had hidden bleeding?
COMMUNITY LEADER
I'm sorry, I don't know much about any of that. Here is the cervical cancer group to ask about the endocervical canal MRI: http://www.medhelp.org/forums/Cervical-Cancer/show/350
I'm purely guessing that 'increased signal' means extra fluid or swelling is there.
Whatever you have might be so rare that no one has considered it. Or you might have two things, which confuses everyone who is looking for a single cause.
Did you travel anyplace exotic? Any opportunity for a strange parasite? Any poisonings? Heavy metals?
The waiting must be terrible for you. Ask the surgeon immediately after the biopsy to give whatever impressions they have from just looking. Sometimes they also do some tests or microscopic evaluation right in the ER, in case they have to do anything additional (like an excision) right then and there.
Sorry I can't be of more help. Please let me know how things turn out for you. Good luck.
I'm purely guessing that 'increased signal' means extra fluid or swelling is there.
Whatever you have might be so rare that no one has considered it. Or you might have two things, which confuses everyone who is looking for a single cause.
Did you travel anyplace exotic? Any opportunity for a strange parasite? Any poisonings? Heavy metals?
The waiting must be terrible for you. Ask the surgeon immediately after the biopsy to give whatever impressions they have from just looking. Sometimes they also do some tests or microscopic evaluation right in the ER, in case they have to do anything additional (like an excision) right then and there.
Sorry I can't be of more help. Please let me know how things turn out for you. Good luck.
Ok update
From last post started having severe pelvic bleeding (not period) and urinating feces. They have thought I had bladder fistula for a few months but I thought unrelated. I saw two new dr this past week, urologist whose from md Anderson and very good did cystoscopy and found a spot on my bladder. Could be small fistula or cancer, was scheduled for immediate surgery next wed for biopsy. It's believe the fistula goes to the colon and is on posterior wall of bladder. I have been told four things cause fistula crohns, endometriosis, inflamatory disease such as lupus and cancer. They know definitively I don't have crohns or endometriosis. My dr did every posdible auto immune test all inflamatory markers were negative. They say chances of this being spontaneous and not cancerous is <5% but they are all confused as to what kind of cancer Bc the spleen and lymphnode involvement. I saw surgeon who specializes in female pelvic cancer he ordered MRI Bc the bleeding and I see him Tuesday my MRI reports said "there is increased signal in endocervical canal" do you know what that means? Spleen still obviously swollen and new swollen node in neck my guess us prob 2-3 cm and growing. I see hematologist Tuesday as well. Also they did urinalysis no infection but mucus and blood present which has been for months. Any ideas?
From last post started having severe pelvic bleeding (not period) and urinating feces. They have thought I had bladder fistula for a few months but I thought unrelated. I saw two new dr this past week, urologist whose from md Anderson and very good did cystoscopy and found a spot on my bladder. Could be small fistula or cancer, was scheduled for immediate surgery next wed for biopsy. It's believe the fistula goes to the colon and is on posterior wall of bladder. I have been told four things cause fistula crohns, endometriosis, inflamatory disease such as lupus and cancer. They know definitively I don't have crohns or endometriosis. My dr did every posdible auto immune test all inflamatory markers were negative. They say chances of this being spontaneous and not cancerous is <5% but they are all confused as to what kind of cancer Bc the spleen and lymphnode involvement. I saw surgeon who specializes in female pelvic cancer he ordered MRI Bc the bleeding and I see him Tuesday my MRI reports said "there is increased signal in endocervical canal" do you know what that means? Spleen still obviously swollen and new swollen node in neck my guess us prob 2-3 cm and growing. I see hematologist Tuesday as well. Also they did urinalysis no infection but mucus and blood present which has been for months. Any ideas?
COMMUNITY LEADER
Because of your family history, it sure looks like you have a rare immune system condition. Not lymphoma. A biopsy might not be called for anymore, not until an immune condition gets diagnosed or ruled out.
Did you have problems since you were very young?
"I do know everytime I have had a bad flare up of my problems I have had high lymphocytes low neutrophils and low blood count which is inconsistent with infection"
Nope, that is incorrect. Many virus infections behave like that. (I'm not saying that it necessarily is a virus infection.)
It seems there is a test available for the ELANE gene mutation. Did you ask for that?
Did you have problems since you were very young?
"I do know everytime I have had a bad flare up of my problems I have had high lymphocytes low neutrophils and low blood count which is inconsistent with infection"
Nope, that is incorrect. Many virus infections behave like that. (I'm not saying that it necessarily is a virus infection.)
It seems there is a test available for the ELANE gene mutation. Did you ask for that?
Oh they do capsul endoscopy Bc u can't get to small intestines with reg one or colonoscopy both of which I had 6 months ago. I'm wondering of maybe this cyclic neutropenia isn't the cause of my lymphoma like symptoms I mean I did a lot of research today although it is crazy rare if left untreated into adulthood can mimic lymphoma causing swollen spleen fatigue night sweats fever swollen nodes ulcers of mouth and colon. Now I'm not sure but I do know everytime I have had a bad flare up of my problems I have had high lymphocytes low neutrophils and low blood count which is inconsistent with infection. I got a calendar and took my blood test and the test with neutropenia fall on 24 day intervals and my daughter is being tested for it Bc dr suspected without knowing anything of my medical issues. I'm still having them investigate castlemans though, and as far as capsule goes I haven't gotten results yet however I do know that it showed gastroperesis which makes sense Bc I puke up I digested food from days earlier so etimes. I'm not sure where this fits in however my mom had gastroperesis but hers was so severe she had a feeding tubs and her stomach removed. Hers was thought to be a result of surgery damaging her vega nerve but now I wonder... Unfortunately she died when I was a kid so I have no way to know specifics. In reference to crp I know when it was high last time I had neutropenia then as we'll..
COMMUNITY LEADER
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.
COMMUNITY LEADER
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.
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.
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?
COMMUNITY LEADER
"...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.)
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.)
Also you said shotty nodes could be several causes, what are they? I can't really find anything online about that
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)
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