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Forllicular Lymphoma with fluid. Please help

PN1982
Posts: 11
Joined: Aug 2016

Dear All,

I am a new member and need your help.

My husband's dianoged with Low Grade Forllicular Lymphoma Stage 1 since May 2016. The symtoms he has are swollen groins and fluid. After we came back from 12-day holiday on cruise, his stomach poped out over night (looks like he's 7 months pregnant). After that 3 weeks, he went to see GP, did CT scan and they found a massive mass in his abdomen area (about rock melon size) and his abdomen is full of fluid. GP sent him into Emergency, they drained 12 litres of fluid of out his abdomen and lungs. They did 4 biopsies so far and the result still came back is Low Grade FL Stage 1. They gave him 2 cycles of RCHOP, did PET scan and the result was not what we expected for. The tumour is still there, only shrunk a little bit. Oncologist decided to change Chemo to Bendanmustin. He just had 1 treatment 2 weeks ago and now waiting for the 2nd .

About the fluid, after testing, oncologist told us it's CHYLE. So he's leaking CHYLE. In the report, they said as the tumour is too big and push on the pancrease and it caused CHYLE leaking. They are expecting this new Chemo will work, the tumour will be shrunk and stop the leak. As well as they put him on Low Fat Diet as they believe, stop FAT will help to slow down the leak.

2 weeks after 1st treatment, he still have trouble with fluid as his stomach is getting bigger. We are now worried this Chemo does not work as well.

Anyone had same problem or know any similar stories, please give us some advices .

Thank so much for your help

PN

Max Former Hodg...
Posts: 3693
Joined: May 2012

Dear PN,

Never heard of your husband's situation here before, but swelling in general is not uncommon with lymhpoma, especially in bulky disease.  The cause is more often the disease itself, not chemo agents.  My next door neighbor, before his first-infusion, was so swollen he could not lie down or turn his neck, and slept in a recliner.

Your husband must have some serious vascular blockages. It has got to be a miserable experience !  I read that the drug octreotide is sometimes used to treat the swelling if surgery is ill-advised.  I'd call and ask his oncologist about it.

max

PN1982
Posts: 11
Joined: Aug 2016

Thank you so much for your reply Max. 

 

Anonymous user (not verified)

I have always been slender and athletic. Then my stomach started to get big. My GP doctor shrugged it off and told me to eat less. After a few months of that it spontaneously went down with no treatments. 2 years later I had a biopsy to test small swollen glands near my heart.  The surgeon said my entire stomach cavity was filled with what he called "scar tissue" which tested positive for FNHL. Bone marrow biopsy also was positive. Fortunately no organs had tumors and Rituxan cleared it up. Scar tissue is still there. What I am getting at is yes FNHL can cause bloating, but I had never heard of the fluid situation your husband has. That must be very unusual. Good luck and please let us know how things go for him. All my best wishes.

PN1982
Posts: 11
Joined: Aug 2016

Hi GKH,

They tested the fluid and found it's full of protein and fat and of course has 10% of cancer cells in there (FNHL). And because of the colour (milky) so they confirmed it's CHYLE (not ascites). 

We talked to some friends about that, and 1 of them is Dietician. She said long time ago she had 2 cases, 1 was that woman had back massage then somehow they pushed her back too strong and poped the duct which connect between stomach and pancrease, after that she was leaking CHYLE. The 2nd case was that guy had car accident and same, leaking CHYLE. 2 of them had to do sugery. 

We told our oncologist that story and said when we went holiday on cruise, we stopped in Bali and my husband did have back massage. That boy stood on his back and he felt something popped. He did not really notice about that as he thought his hernia popped out again (he was not happy about that). 12 days after that massage, his stomach was full of fluid. 

We tried to tell the oncologist to find the leak and fix it as we believed my husband had the leak somewhere after that massage. But the oncologist dismissed it, he still thinks the tumour causes problem.

After 2 cyles of RCHOP did not work, they put him on Low Fat Diet and straight away the fluid changed colour, no more milky, the colour is now clear (looks more like ascites). They put the permanent drain in for him and hope for this Chemo works, break down the tumour and the leak will stop.

Today is 2 weeks after the 1st treatment with Bendanmustine, my husband still has problem with fluid. He's worried this Chemo is same with RCHOP, doesn't work for him :(. 

Anonymous user (not verified)

Maybe visit a surgeon? This is outside my range of experience so all I can do is wish you well. You are in Oz (Australia) ?  I will ask some friends I have there in medical profession who can perhaps suggest a course of action. Once again, best wishes.

PN1982
Posts: 11
Joined: Aug 2016

Hi GKH, yes I am in Perth Australia. Much apprecicated if you can ask your friends and give us some advises.

Thanks GKH

Anonymous user (not verified)

no reply. I think my contact is on vacation (holiday). Will let you know what she says when Zi hear back from her.

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

Chylous ascites is an uncommon clinical condition that occurs as a result of disruption of the abdominal lymphatics. Multiple causes have been described, including the following:

  • Abdominal surgery
  • Blunt abdominal trauma
  • Malignant neoplasms - Hepatoma, small bowel lymphoma, small bowel angiosarcoma, and retroperitoneal lymphoma
  • Spontaneous bacterial peritonitis
  • Cirrhosis - Up to 0.5% of patients with ascites from cirrhosis may have chylous ascites.
  • Pelvic irradiation
  • Peritoneal dialysis
  • Abdominal tuberculosis
  • Carcinoid syndrome
  • Congenital defects of lacteal formation
GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

Because chylous ascites is a manifestation rather than a disease by itself, the prognosis depends on the treatment of the underlying disease or cause.

Supportive measures can relieve the symptoms. These measures include repeated paracentesis, diuretic therapy, salt and water restriction, elevation of legs with use of supportive stockings, and dietary measures.

Lymphatic flow increases after the ingestion of a fatty meal. The fatty acids derived from short-chain and medium-chain triglycerides diffuse directly across enterocytes into the portal venous system. Their absorption does not affect lymphatic flow. However, the fatty acids derived from long-chain triglycerides are re-esterified into triglycerides in the enterocyte. They are then incorporated into chylomicrons which subsequently enter the lymphatic system.

A low-fat diet with medium-chain triglyceride supplementation can reduce the flow of chyle into the lymphatics.[24] Typically, medium-chain triglyceride oil is administered orally at a dose of 15 mL 3 times per day at meals. However, this approach is frequently not successful. One recent case report described the successful use of orlistat (Xenical) in a patient who had difficulty complying with a low-fat diet.[25]

If chylous ascites persists despite dietary management, the next step may involve bowel rest and the institution of total parenteral nutrition.[15] Bowel rest and total parenteral nutrition are postulated to be beneficial in patients with posttraumatic or postsurgical chylous ascites.

Paracentesis can result in immediate symptom relief; however, reaccumulation of fluid usually follows, and patients may require repeated paracentesis. Some authorities have advocated large-volume paracentesis. Morbidity from a single tap is usually low, but complications, such as peritonitis and hemorrhage, can occur. Transfusion of albumin and/or RBCs during paracentesis may help prevent hypovolemia in patients with hypoalbuminemia or anemia.

Multiple case reports describe the use of octreotide, a somatostatin analog, in the management of chylous ascites, typically at a dose of 100 mcg administered subcutaneously 3 times per day.[15, 16, 26, 27, 28] A combination of total parenteral nutrition and subcutaneous octreotide has been used to successfully treat congenital chylous ascites in a newborn.[29] Experimental work in humans has shown that somatostatin can significantly decrease postprandial increases in triglyceride levels. This effect cannot be explained by either inhibition of gastric emptying or inhibition of exocrine pancreatic secretion.[30, 31] Octreotide is most likely effective in chylous ascites on account of its ability to inhibit lymphatic flow. Indeed, in a canine model, infusion of somatostatin resulted in a decrease in lymph flow, measured via a cannula inserted into the thoracic duct.[32]

Postsurgical chylous ascites usually resolves with supportive therapy. Early reoperation is indicated when the site of leakage is apparent and if the patient is a good operative candidate.[33] Case reports now describe the laparoscopic treatment of chylous leaks, using suture ligation and fibrin glue to control the leak.[34] In another report, fibrin glue applied to absorbable mesh was useful in patients with large areas of diffuse lymphatic leakage.[35] Another report describes the treatment of chylous ascites after laparoscopic Nissen fundoplication with percutaneous injection of tissue glue (ie, N -butyl-cyanoacrylate mixed with ethiodol) into the thoracic duct.[36]

Lymphangiography itself may play more than a diagnostic role in the management of lymphatic leaks. Lymphangiography with lipiodol led to the resolution of lymphatic leakage in a small number of patients with postoperative chylous ascites.[37, 38] Lipiodol has been used as an embolic agent in a variety of angiographic procedures. Furthermore, it was postulated that leakage of lipiodol from the site of lymphatic vessel perforation may have stimulated a local inflammatory reaction in surrounding soft tissues. This, in turn, may have led to the closure of the leaks.[37]

Peritoneovenous shunting has been used successfully in small numbers of patients with chylous ascites.[39] However, shunt failure is common and the procedure may be fraught with complications.

Use of TIPS to successfully treat chylous ascites related to cirrhosis has been reported.[40, 41]

Malignant chylous ascites requires specific therapy directed at the primary cause and also supportive therapy. These therapies may include chemotherapy, radiation, and surgery. Laparotomy and ligation of the leaking lymphatics, resection of a leaking small bowel segment, and removal of an obstructing tumor all have been attempted with varying degrees of success. Transient success also has been achieved with peritoneovenous shunts.

Laparotomy should not be used in pediatric patients with chylous ascites unless the condition is unresponsive to conservative therapy and a lesion that can be corrected by surgery is apparent.

PN1982
Posts: 11
Joined: Aug 2016

Thank you very much for this info GSP2. I will pass this info to our oncologist and wait and see what he will say.

PN1982
Posts: 11
Joined: Aug 2016

Hi everyone,

Just want to update info about my husband's treatment.

He just finished his 2nd treatment with Bedanmustine/Rituximab last Tue. 

He did very well after the 1st treatment, had no side effects at all. Before the 2nd treatment start, we came to see the oncologist, he said as the fluid is still building up, he's not very confident this Chemo is working. But just try 1 more treatment to see what happen. If fluid is still building up, dont expect too much about the result :(. My heart's broken when I heard that. 

Anyway, my husband had the 2nd treatment last Monday. He did very well for the fisrt 4 days, after that he feels tired, sometimes he feels pain in the stomach, right at where the tumour is. He feels it pushs out hard, then make him vomit. Today is 12 days after treatment, he still feels tired and vomitting. 

He will have PET scan end of this month (30/9), then see the oncologist on 3/10. But at the moment, we are not holding our breath. We have no hope at all this Chemo is working. How sad and disappointed. 

The next plan is he will go back to hospital for 2 weeks for the stronger Chemo RICE. We are so scared as we heard about bad side effects of this Chemo.

I dont know why this tumour is so stubborn :(

Mary from NJ's picture
Mary from NJ
Posts: 60
Joined: Apr 2016

After reading your update about your husband, I wanted to share some of my recent experience.  I had only the Rituxan (immunotherapy & not chemotherapy drug) for the type of Hodgkins lymphoma I have this past June/July.  The doctor told me that feeling any cramping/pinching/pain in the abdomen area (where the lymph nodes are enlarged) could be a sign the Rituxan is doing its job. He said about 50% of his patients experience this. I had very little of this, but I had (and still have) bloating and leg swelling.  Record high temperatures & high humidity this summer made that worse as well as eating/drinking ANYTHING with speck of salt. I try very hard to avoid eating anything from a box.   Has your husband been avoiding all salt and processed foods?  That would be my recommendation.  I haven't read through all of the postings here, but has your husband gotten a second and third opinion?  If not, I would suggest that before proceeding with the RICE treatment. 

I had a follow-up CT scan last week (3 months from the start of 4 weekly Rituxan infusions).  The scan showed the lymph nodes all decreasing in size between 30 & 50%, so this is a good sign the Rituxan is doing its job.  I am not sure how a doctor can determine if a chemotherapy treatment regime is working so soon after the infusion......I thought it could take months to do the job it is designed to do, but that may just be how Rituxan works.

My sons keep telling me to 'sweat it out' to get rid of the leg swelling and bloating.....I try to ride my bike frequently outdoors and also ride an excerise bike indoors. Although I am exhausted, I make it a part of my daily routine.  Some days I ride only 10 minutes and some days I can make it for an hour. 

I will keep your husband and you in my prayers that he has a positive result moving forward.  Keep us updated & good luck!

 

PN1982
Posts: 11
Joined: Aug 2016

Hi Mary,

Thanks for your reply and sharing your experience.

In the CT scan result, it said as the tomour is too big, push on my husband's pancrease and lymp system causing fluid leaking. The only way to get rid of this fluid is shrink the tomour.  First 2 treatments with RCHOP failed (lymp nodes are back to normal, not in flame anymore. Tumour had minimal response =>stable => failed). They had a conference about my husband's case with many oncologists involved plus the head doctor from Germany, they decided to try Bedenmustine/R. If it doesn't work as well, they will use RICE :(. 

At the moment the fluid is still building up, it meant the tomour did not shrink at all, still pressing on his pancrease and lymp system. That's why doctor doesn't think this Chemo is working either.

I know we have to be strong, stay possitive, keep fighting, but it's hard to deal with sometimes when we see nothing happened yet and losing our hope :(.

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