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Chylous Ascites as a TKI side-effect? Specifically Sprycel?

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I have had CML for 8 year and obtained MMR, however I developed severe ascites and mild to moderate pleural effusions.  The lung problem was never tested but I had several paracentesis done and the fluid that came out (on average about 6 liters each time) was "chylous"; high triglycerides [~4000], hi protien, high neutrophils, and even came out with a BCRABL reading that was slightly different than that which was in my blood (2.6 vs 3 in the blood).

In 2016 since I was in MMR, I stopped the Spycel (I was taking 50 mg daily and holding MMR no problem).  When I stopped the sprycell the fluid problem stopped and the pleural effusions went away as well.

Seemed pretty indicative that it was related to the Sprycel.  Unfortunately the CML came rushing back and 3 months after stopping I was back at the top of the BCRABL graph.  So the doctor put me BACK on Sprycel.

Slowly, over months, the ascites returned but wasn't localized enough for effective paracentesis removal.  Then, somehow, last year, the ascites came back with a vengence and I was getting more and more taken out at shorter and shorter intervals.  First it was 6 liters in 6 months, then 6 liters in 3 months, then 6 liters in two weeks, then 8 liters in 10 days, now it's six liters every six days.

This is NUTS. I've been hospitalized at one of the top research hospitals in the US and nobody can figure out what the heck it is.  They've tested for:

  • TB, liver failure (two different liver MRI's), heart failure 
  • Spontaneous bacterial peritonitis
  • Every type of hepatitis
  • Other malignancies haven't shown up
  • Lymph system anomalies -- I had a Lymphoscintigraphy where they injected radionuclides between the toes of each foot and followed it around my lymph system but found no leaks and no malignancies

So here's the think, in August 2018 I stopped the sprycel again expecting the ascites to go away (again), but it didn't.  didn't even slow down.

So once again I lost MMR pretty much immediately and 3 months later, I was approaching the top of the BCRABL graph again so my oncologist started me on Bosutinib... that drug started impacting my CML but not the ascites.

I swtiched oncology teams and am now with this top hospital with a top researcher involved in the development of Gleevec.

He has not started me back on a TKI and is considering options.  He didn't like the bosutinib option for me.

I have had (for 18 years) a mild to moderate cardiomyopathy and have been on cardiac drugs for 18 years.  Because of these drugs I have super-low blood pressure.  I can barely get my systolic above 100 but at least it keeps my constant afib at bay a little bit.

These doctors (many many doctors) have scoured the research trying to find a connection between the TKI and the abdominal ascites (i.e. 1 liter of chylous fluid every single day) but so far they found some data on Sprycel and Pleural Effusions but that's about it.  And those effusions stopped with the discontinuing of the sprycel, like it did for me in 2016 but not now.

The oncologist told me two days ago that he really expected after my week of hospitalization that they would have uncovered the cause, I've probably had a hundred blood tests and other labs and MRI's and CT Scan.  I asked him what he was thinking it might have been and he said, heart failure, liver failure or some malignancy.

So while he's talking to some of his colleagues around the country, I thought I would post my very first message in here... i know this is a long one.  I am happy to reciprocate with my 7 years experience on Sprycel but I don't know much about CML except that Sprycel worked.  When I was diagnosed, accidentally, I was approaching blast crisis with 30% blast cells (i think); they gave my hydroxyurea to knock it down and then started me on 100 mg of Sprycel and quickly moving to 50 mg for several years.  Then 20 mg (which worked fine) until discontinuing it in August because of the suspected connection with the ascites.

Thank you everyone.

Jim

 

 

Jim, I sure hope they can get those ascites under control.  I did find a mention of ascites in the Sprycel prescribing information.

6.2 Additional Pooled Data from Clinical Trials
The following additional adverse reactions were reported in adult and pediatric patients
(n=2809) in SPRYCEL CML and Ph+ ALL clinical studies at a frequency of ≥10%, 1%–
<10%, 0.1%–<1%, or <0.1%. These adverse reactions are included based on clinical
relevance.
Gastrointestinal Disorders: 1%–<10% – mucosal inflammation (including mucositis/
stomatitis), dyspepsia, abdominal distension, constipation, gastritis, colitis (including
neutropenic colitis), oral soft tissue disorder; 0.1%–<1% – ascites, dysphagia, anal
fissure, upper gastrointestinal ulcer, esophagitis, pancreatitis, gastroesophageal reflux
disease; <0.1% – protein losing gastroenteropathy, ileus, acute pancreatitis, anal fistula.

I guess the good news is you have more TKIs to try - imatinib, nilotinib, ponatinib, radotinib.  Perhaps asciminib will be the answer for you.

I hope you can get out of the hospital soon.

Kirk

Hi Kirk,

Yeah, that percentage is in the literature but from what I've learned is pretty skewed (low).  I talked to four different parmacists over the years who said it's a lot higher than that (maybe as much as 37%) but that the doctors don't always go through the process of reporting it back to the pharmaceutical companies.  My own oncologist as a case in point -- he never did it because his patient load is so high that it just wasn't feasible.

There is supposed to be a "new" Tki that works differently? something called bcrzero or something like that?  I guess I should google it. I must have he name wrong... I'll ask my doctor about it again.

If this problem IS caused by the TKI drug I wonder if it's just TKI's in general.  And it may not even be related, we don't now, it was odd that the first time I stopped sprycel the problem stopped immediately and stayed stopped until I started back 4 months later... that's pretty damning anecdotal evidence.

But that didn't work this past year.  I stopped spycell for four months and nothing changed.  Started Bosutinib and nothing changed.  Stopped bosutinib 2 weeks ago and so far, nothing's changed.

thanks
Jim

 

PS - EDIT

Just looked up one of the drugs you mentioned -- that's it https://medkoo.com/products/7317  it's called ABL001.

Thanks again for the reference -- that was the one. I'm going to read up on it.

Jim - This is just awful.  I feel just tremendously sorry for you to be going through this.  Bad enough to have the trouble itself, but to not know what the hell is going on - terrible.  The only good thing here is that you are at a research institution with CML specialists of the highest order.  In the US, there is a place under the National Institutes of Health umbrella for diagnostic "stumpers" - when all else has failed to uncover the answer - maybe the UK also has such a place.  I hope there will be others here who can comment and help, but I also would suggest you re-post your tale on the US forum, because there is a guy there - Trey - who might have something helpful to say.  Please keep us apprised, and good luck to you.

Thanks for posting Jim and so sorry to hear you are going through this. I really hope you get some relief soon.

I shouldn't comment as I'm not qualified to do so, but it strikes me that there could well be some interplay between your cardiac meds (and low blood pressure) and these ascites. Do you mind me asking what cardiac meds you are on?

I've been on enalapril (an ACE inhibitor, blood pressure medication) for 25 years as a prophylactic (to protect my kidneys from diabetic nephropathy) and I've had low blood pressure since starting Sprycel two and a half years ago, with even the very smallest dose of enalapril. I took myself off the enalapril six weeks ago (not recommending this to anyone else!) and my blood pressure is now fine. Now just need to make sure my kidneys are ok.

Only mentioning because I feel as though there is an interaction between Sprycel and enalapril and I also believe I have had mild ascites since very early  in the Sprycel treatment. 

Not sure this helps whatsoever. Thank you again for posting and all the very best in your quest for answers and relief.

It's funny you should mention this -- I had this thought the other day.  The cardiac meds keep my blood pressure so low (typically 95/70).

Metroprolol 75 mg x 2
Digoxin 250 mcg
Spironolactone 100 mg daily
Lovastatin 40 mg

 

Also Allopurinol (gout)

Was taking Sprycel for 7 years 100 mg then 50 then 20. now waiting to swtich to new TKI

Every time they take all this fluid out of me (typically 6 liters or better) my pressure gets even worse... obviuosly.

I have wondered about a BP connection in all this.

Hey, I really appreciate you folks chiming in.

Jim

 

Can find no references to TKI drugs in this main article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5863006/ from NIH

 

Every new thread of information is helpful.... I'm trying to connect the dots.  I'm flabbergaseted (or I guess you guys across the pond would say Gobsmacked... (?) that my previous oncologist would have treated this so matter-of-factly that three years ago we/they should have dug into this -- deeply, instead nothing was done other than get me paracentesis once in a while.

Now I'm reading articles of a mortality of 40 to 70% (probably because of the preponderence of undiscovered malignancies) for Atraumatic chylous ascites.  I've been just going and getting my peritoneal cavity drained and it wasn't until I switched doctors to this major hospital here in AZ, that the hematologist/oncologist asked me the question: "What's the cause of the chylous fluid in your belly?"

And I'm like, uh, I don't know, nobody told me.  So that's when they started the investigation.  then I read articles like this https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5863006/ from NIH and it scares the crap out of me that nobody has been working on this all this time until just last month.

Anyway, they're checking with other cancer institutions in the US and perhaps in the UK to see if they can find anything.  In the meantime my CML still has to be dealt with so I'm going to have to go on SOME form of drug, soon.  Just nuts.

But thank you everyone... maybe we'll hit on something.

Jim, didn't realize you were an American!  I reiterate you should additionally post on the LLS Forum, because of Trey.  Obviously, I can't guarantee that he can/will add anything to the discussion.

This is just appalling.  I, too, had to do my own digging, but that's another story.  I well remember the frustration and agony of having to be my own medical and scientific sleuth - something I had no training for whatsoever!  I think, unfortunately, that many doctors function like medicine is just another job, and they stay in their lanes.  I was always so sad that there was no intellectual curiosity, let alone the much vaunted compassion they were supposed to have.  Nope.  Just another day at the office.

SOME doctors.  I am hoping and praying that you land in the hands of doctors and at an institution that truly cares to get to the bottom of your case and get you some relief.

Dear Jim,

What is your current status with the ascites? Have you gotten it under control? I am a CML patient with autoimmune hepatitis. I've been Sprycel for many years 40mg daily and developed pleural effusions. They didn't know whether it was from the drug or my liver disease but are now concluding it's from the liver. I wondered and I'm sure they explored autoimmune hepatitis in your case. I'm still suspect that it could be partly due to the Sprycel. I went off the sprycel once after a neutropenic event and my BCR started creeping back up.Did you switch CML drugs?

Hope you are doing well. Thanks for sharing information

I still have a large Amount of chylous ascites I have to go every week for a paracentesis they take about 5 L each time I also have plural effusion’s one time when I got a thoracentesis they said it was Chylous The other time from a different clinic they didn’t. I went for a second opinion to the Cleveland clinic and visited over 10 doctors there to try and figure out what was causing the Ascites they could not figure it out but they said that their bet was on the sprycell that that was the cause however they couldn’t explain why since the drug was discontinued years ago I’m still having this problem I am on a different TKI now I’m taking Imatinib / gleevec 400 mg.

I told the doctors I’ve coined a term called molecular Fuckery and that I believed that my seven years on sprycel what is the cause of my ongoing problems.

anyway I am no closer to a solution they have performed a couple of procedures on my liver where they have injected some glue in the lymphatic system but they still even haven’t really found the leak my suspicion is that the spry cell caused some cellular damage or something that allows these fluids to transit some barrier somehow I don’t know I wish I knew but I’ve had over 100 paracentesis is thus far I really do need to get a thoracentesis as well but I don’t want to because my suspicion is that as soon as I get it it just fills back up again.
 

i’ve been tested for hepatitis and everything under the sun they’ve done several liver biopsies and found no real problem.

Good luck to you certainly if I ever do find something out definitive I will post something in here about it. 
 

I am dictating this on my iPad so I hope the typos aren’t too atrocious

https://www.researchgate.net/publication/274140299_Dasatinib-Related_Chy...

wondering if you read this...

logisnews - I don't know if this helps explain anything at all for your case, but I was reminded of an article I saved because it laid out the effects of various TKI's and where they came from.  It's called, Class effects of tyrosine kinase inhibitors in the treatment of chronic myeloid leukemia, by FJ Giles et al, in Leukemia (2009) 23, 1698-1707.  Of interest to you would be the section on fluid retention, page 7-8.  Imatinib and dasatinib share off-target effects on interstitial fluid through PDGFR.  Bosutinib, however, doesn't.  I have trouble with pleural effusions on dasatinib and my onc keeps wanting to switch me to bosutinib because his patients on it have not gotten pleural effusions.  None of this may be relevant to you (or unknown to you), but the article is very detailed and easy to read and MIGHT be helpful in explaining why both Gleevec and Sprycel seem to be giving you major problems.  Maybe on bosutinib you could get well?

Edit:  Just re-read all your posts and see that you've already tried bosutinib - sorry.

Hi Jim, 

did they ever get to the bottom of the ascites? I’m a 33 year old woman and after surgery for an incarcerated femoral hernia last May, I developed chylous ascites. They have tried and tested me for everything but it’s just not improving. I’m currently needing to get drained every few weeks but my organs have now prolapsed so it means I’m unstable to even walk now. 
Any advice would be much appreciated 😊

Jim,

 

I'm so sorry to hear that the chylous effusion is not going away. The last we wrote on the LLS forum was 3 years ago, I had just developed another pleural effusion 6 years after my first. I was on 50mg Sprycel at the time. This time the effusion did not go away. I was able to maintain CMR on 20mg every other day but I still had the effusion. Mine was not chylous and it was limited to the left lung only. I had a Pleurx Catheter inserted in Dec. 2018 so I could do my own drainage and after 10 more months I switched to Tasigna 150mg twice/day. The pleural effusion continued.

Finally, this year, my interventional pulmonologists at Mayo decided to try something new. They infused 10ml (400mg) of triamcinolone acetonide through the catheter in hopes it would reduce the effusion enough to remove the catheter. That was done in mid-April of this year and the catheter was removed on May 3. So far, so good. I am the only person they have tried this on with my situation. But, like you, I was the only person they knew with that situation.

My uneducated guess is that the steroid was able to interrupt whatever process was continuing the effusion long after the drug that caused it was discontinued.

At the time I first read about your situation our friend who was retired as the head of liver services at UCLA was visiting. I passed along to you the name of the doctor at Mayo who specialized in Chylous ascites. Were you ever able to get in touch with him? If so, it doesn't appear he was able to help you.

Is a Pleurx catheter something you can use in your situation? It made my quality of life so much better. It might be worth it to mention my infusion procedure to see if it could possibly work in your case. 

Take care and good luck!

Michelle,

When I read your post it started me thinking about pessary use for the prolapse. Then I googled organ prolapse due to ascites and came up with this article. The chylous fluid in this case was due to cirrhosis of the liver, but the ascites caused organ prolapse that interfered with the woman's ability to walk. Warning, the article has graphic photos but describes the surgery and cause. While it doesn't apply directly to your situation it may be a place to start a discussion with your physician(s). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5102936/ 

Also, I wanted to share the name of the doctor at Mayo-Rochester whose interest is chylous fluids; Patrick Klamuth, MD. I don't know where you are being seen but perhaps your physician could contact him for a consultation for your situation or arrange for a referral. People from all over the world come to Mayo.

Good luck!

Pat

 

Hi Pat, 

Thank you for your reply. I’m unable to open that link? I’ve had all the imaginable tests for things like infection, liver function, autoimmune all the ‘usual suspects’ for chylous ascites, all to no avail. I’ve had MRI imaging, laparoscopy, laparotomy and we just can’t find the source. I have an appointment in London in 2 weeks so hoping we can come up with what our next plan of attack is. It’s so bizarre that I was absolutely fine before they operated on me for the hernia (the surgeons say there was milky fluid when they cut me open but I was never like this, if I had it, I made it to 32 without any issues so couldn’t have been bad). 
 

I do hope Jim is ok, he’s not responded but I can’t see another way to reach him? 
 

M

Hello everybody I just wanted you to know that after almost 140 paracentesis over the last two and a half years a surgeon by the name of Dr Scott Kriegshauser from the Mayo clinic figured out how to fix it. There was still no definitive proof on the cause my suspicion and that of the Cleveland clinic is that it was caused by the tki inhibitor spry cell, however Mayo clinic did not necessarily agree with that however we were left to deal with the obvious that every 7 to 10 days I would have to get a paracentesis where I would get 7 l of Kyla's fluid pulled out of my peritoneal cavity.

The doctor is an interventional radiologist and he figured that we could try an embolization procedure in my liver where I guess the way that it works is they introduce just a little bit of adhesive or glue in there to try and plug the leak it was kind of chancey because we didn't know what the negative effects would be.

After the second procedure it was very worrisome because my legs and my ankles blew up like balloons it was awful but somehow the swelling receded and after the third procedure it seemed like the volume was reduced from almost 7 l a week to about 2 and 1/2 to 3 l a week.

We opted for a fourth procedure where he was going to try and go in and get at different parts of my liver that he had not glued before I'm sure there's a better term for that but this is like micro micro surgery where I guess you're introducing tiny minute amounts of adhesive into extremely tiny vessels anyway long story short fourth time was the charm it actually worked and I have not had to have a paracentesis in almost 9 months.

I still have fluid on the plural space of my lungs actually just my right lung almost 2 l of fluid but I'm not really symptomatic with it so I'm not looking for any surgical intervention at this point.

Anyway I just thought I would pass this along to everybody I am very very grateful.

Hello everybody I just wanted you to know that after almost 140 paracentesis over the last two and a half years a surgeon by the name of Dr Scott Kriegshauser from the Mayo clinic figured out how to fix it. There was still no definitive proof on the cause my suspicion and that of the Cleveland clinic is that it was caused by the tki inhibitor spry cell, however Mayo clinic did not necessarily agree with that however we were left to deal with the obvious that every 7 to 10 days I would have to get a paracentesis where I would get 7 l of Kyla's fluid pulled out of my peritoneal cavity.

The doctor is an interventional radiologist and he figured that we could try an embolization procedure in my liver where I guess the way that it works is they introduce just a little bit of adhesive or glue in there to try and plug the leak it was kind of chancey because we didn't know what the negative effects would be.

After the second procedure it was very worrisome because my legs and my ankles blew up like balloons it was awful but somehow the swelling receded and after the third procedure it seemed like the volume was reduced from almost 7 l a week to about 2 and 1/2 to 3 l a week.

We opted for a fourth procedure where he was going to try and go in and get at different parts of my liver that he had not glued before I'm sure there's a better term for that but this is like micro micro surgery where I guess you're introducing tiny minute amounts of adhesive into extremely tiny vessels anyway long story short fourth time was the charm it actually worked and I have not had to have a paracentesis in almost 9 months.

I still have fluid on the plural space of my lungs actually just my right lung almost 2 l of fluid but I'm not really symptomatic with it so I'm not looking for any surgical intervention at this point.

Anyway I just thought I would pass this along to everybody I am very very grateful.

Hello everybody I just wanted you to know that after almost 140 paracentesis over the last two and a half years a surgeon by the name of Dr Scott Kriegshauser from the Mayo clinic figured out how to fix it. There was still no definitive proof on the cause my suspicion and that of the Cleveland clinic is that it was caused by the tki inhibitor spry cell, however Mayo clinic did not necessarily agree with that however we were left to deal with the obvious that every 7 to 10 days I would have to get a paracentesis where I would get 7 l of Kyla's fluid pulled out of my peritoneal cavity.

The doctor is an interventional radiologist and he figured that we could try an embolization procedure in my liver where I guess the way that it works is they introduce just a little bit of adhesive or glue in there to try and plug the leak it was kind of chancey because we didn't know what the negative effects would be.

After the second procedure it was very worrisome because my legs and my ankles blew up like balloons it was awful but somehow the swelling receded and after the third procedure it seemed like the volume was reduced from almost 7 l a week to about 2 and 1/2 to 3 l a week.

We opted for a fourth procedure where he was going to try and go in and get at different parts of my liver that he had not glued before I'm sure there's a better term for that but this is like micro micro surgery where I guess you're introducing tiny minute amounts of adhesive into extremely tiny vessels anyway long story short fourth time was the charm it actually worked and I have not had to have a paracentesis in almost 9 months.

I still have fluid on the plural space of my lungs actually just my right lung almost 2 l of fluid but I'm not really symptomatic with it so I'm not looking for any surgical intervention at this point.

Anyway I just thought I would pass this along to everybody I am very very grateful.

Hello everybody I just wanted you to know that after almost 140 paracentesis over the last two and a half years a surgeon by the name of Dr Scott Kriegshauser from the Mayo clinic figured out how to fix it. There was still no definitive proof on the cause my suspicion and that of the Cleveland clinic is that it was caused by the tki inhibitor spry cell, however Mayo clinic did not necessarily agree with that however we were left to deal with the obvious that every 7 to 10 days I would have to get a paracentesis where I would get 7 l of Kyla's fluid pulled out of my peritoneal cavity.

The doctor is an interventional radiologist and he figured that we could try an embolization procedure in my liver where I guess the way that it works is they introduce just a little bit of adhesive or glue in there to try and plug the leak it was kind of chancey because we didn't know what the negative effects would be.

After the second procedure it was very worrisome because my legs and my ankles blew up like balloons it was awful but somehow the swelling receded and after the third procedure it seemed like the volume was reduced from almost 7 l a week to about 2 and 1/2 to 3 l a week.

We opted for a fourth procedure where he was going to try and go in and get at different parts of my liver that he had not glued before I'm sure there's a better term for that but this is like micro micro surgery where I guess you're introducing tiny minute amounts of adhesive into extremely tiny vessels anyway long story short fourth time was the charm it actually worked and I have not had to have a paracentesis in almost 9 months.

I still have fluid on the plural space of my lungs actually just my right lung almost 2 l of fluid but I'm not really symptomatic with it so I'm not looking for any surgical intervention at this point.

Anyway I just thought I would pass this along to everybody I am very very grateful.

Hello everybody I just wanted you to know that after almost 140 paracentesis over the last two and a half years a surgeon by the name of Dr Scott Kriegshauser from the Mayo clinic figured out how to fix it. There was still no definitive proof on the cause my suspicion and that of the Cleveland clinic is that it was caused by the tki inhibitor spry cell, however Mayo clinic did not necessarily agree with that however we were left to deal with the obvious that every 7 to 10 days I would have to get a paracentesis where I would get 7 l of Kyla's fluid pulled out of my peritoneal cavity.

The doctor is an interventional radiologist and he figured that we could try an embolization procedure in my liver where I guess the way that it works is they introduce just a little bit of adhesive or glue in there to try and plug the leak it was kind of chancey because we didn't know what the negative effects would be.

After the second procedure it was very worrisome because my legs and my ankles blew up like balloons it was awful but somehow the swelling receded and after the third procedure it seemed like the volume was reduced from almost 7 l a week to about 2 and 1/2 to 3 l a week.

We opted for a fourth procedure where he was going to try and go in and get at different parts of my liver that he had not glued before I'm sure there's a better term for that but this is like micro micro surgery where I guess you're introducing tiny minute amounts of adhesive into extremely tiny vessels anyway long story short fourth time was the charm it actually worked and I have not had to have a paracentesis in almost 9 months.

I still have fluid on the plural space of my lungs actually just my right lung almost 2 l of fluid but I'm not really symptomatic with it so I'm not looking for any surgical intervention at this point.

Anyway I just thought I would pass this along to everybody I am very very grateful.

Hey Jim, 

I’m so glad you’re doing so much better! That really is great to hear. 
 

Were they able to identify any leak or did they just go in ‘blind’ when they did the liver embolisation? I’ve been asking for a long time for an intrahepatic liver lymphangiogram. I’m UK based and I’ve had a bit of a nightmare with my consultant (found out today my care has been transferred back to a consultant who I really like, he genuinely cares for me and wants me to get better so I’m hoping he’ll push to get this done).

I’ve been living this way for 16 months, I just want my life back, my son wants his mum back - it’s horrific! 

Do you accumulate any fluid in your abdomen at all now? I need to have a paracentesis tomorrow - they are not enjoyable. I also accumulate it in my pleural space so need to get that removed too. 
 

M

Oh, bravo!  So, so happy for you to be over this long, long nightmare!  I wonder if the "glue" is triamcinalone acetonide, the same thing hannibellemo successfully tried for pleural effusion?  I think you are right that this was all caused by the TKI.  Most of them have PDGFR included in their mix to hit our CML target, and that affects (increases) interstitial fluid pressure, hence leaks in many systems (edema).  Permeability is another subject, maybe a genetic mutation? that you were/are unlucky enough to have a problem with.  At any rate, doesn't the new TKI, asciminib (ABL001) eschew PDGFR?  Maybe this would be the drug for you going forward?  Sorry for the armchair amateur doctoring - just intellectually (and personally) curious!  Just so very, very glad you endured and persevered until a solution was found; what a hell you have braved.

Jim,

That is truly wonderful news! So happy for you!

Pat

Michele,

I'm sorry you can't open the link. Let me see if I can send it another way. 

Yes, there is no way to PM people on this site, but you can ask the moderator and they will check with the person you want to contact, at least that is what I did in the past.

Having read Jim's latest response I definitely would want your doc to get in contact with his at the Mayo Clinic to see what procedure they actually did. Mine was total experimentation to get rid of the pleural effusion, but it worked for me.

Pat

Well I have not attempted any intervention to get rid of the plural effusion I am still doing very well after 9 months of not having a paracentesis every 7 days I literally had probably 120 or more paracentesis over the last couple years and that was not fun.

My physician at the Mayo clinic was Dr Scott Kriegshauser in the interventional radiology department at the Mayo clinic in Phoenix Arizona.

I was hospitalized for a week or two years ago and they had 12 doctors from almost as many different specialties trying to figure out why this was happening nobody could figure out but Dr Kriegshauser figured out a way to stop it it was pretty much hit and miss but he proceeded cautiously and after the 4th procedure it actually worked I am eternally grateful for that it's totally changed my life I would like to fix the plural effusions but I'm not really symptomatic at the moment I would just like to get the fluid out of there once and for all like I said it's almost 2 liters at times so it's pretty dramatic yet I'm not short of breath and that's just on one lung that's just on the right lung.

 

Well I have not attempted any intervention to get rid of the plural effusion I am still doing very well after 9 months of not having a paracentesis every 7 days I literally had probably 120 or more paracentesis over the last couple years and that was not fun.

My physician at the Mayo clinic was Dr Scott Kriegshauser in the interventional radiology department at the Mayo clinic in Phoenix Arizona.

I was hospitalized for a week or two years ago and they had 12 doctors from almost as many different specialties trying to figure out why this was happening nobody could figure out but Dr Kriegshauser figured out a way to stop it it was pretty much hit and miss but he proceeded cautiously and after the 4th procedure it actually worked I am eternally grateful for that it's totally changed my life I would like to fix the plural effusions but I'm not really symptomatic at the moment I would just like to get the fluid out of there once and for all like I said it's almost 2 liters at times so it's pretty dramatic yet I'm not short of breath and that's just on one lung that's just on the right lung.

 

Well I have not attempted any intervention to get rid of the plural effusion I am still doing very well after 9 months of not having a paracentesis every 7 days I literally had probably 120 or more paracentesis over the last couple years and that was not fun.

My physician at the Mayo clinic was Dr Scott Kriegshauser in the interventional radiology department at the Mayo clinic in Phoenix Arizona.

I was hospitalized for a week or two years ago and they had 12 doctors from almost as many different specialties trying to figure out why this was happening nobody could figure out but Dr Kriegshauser figured out a way to stop it it was pretty much hit and miss but he proceeded cautiously and after the 4th procedure it actually worked I am eternally grateful for that it's totally changed my life I would like to fix the plural effusions but I'm not really symptomatic at the moment I would just like to get the fluid out of there once and for all like I said it's almost 2 liters at times so it's pretty dramatic yet I'm not short of breath and that's just on one lung that's just on the right lung.

 

My name is Jim. All you'd have to do is mention the word CML and chylous ascites and he'll know exactly the situation.  I encourage them to write up a paper on this the indicated that they might do that but I haven't heard anything in a while I know they're really busy because of covid obviously and if you're an interventional radiologist like he is he's probably got his plate really really full.

You can now send personal messages on this site. Click the envelope icon at top right of the title ribbon this page.

Good to know, Alastair, thanks! I think I noticed the envelope but hadn't yet taken the time to explore and see what it was about. smiley

Pat

Hi Pat/Jim, 

Sorry for the delay in replying, I was waiting until I met with a professor in London. He thinks I have mesenteric lymphangiomatosis and this was described as being like an aggressive cancer that they can’t treat. I don’t agree with this as I believe if this was the case it would have been picked up on one of my many scans/tests/surgeries - I even had an exploratory laparotomy and everything appeared normal. They are talking about starting me on a MEK inhibitor however, I am going to push to have a mesenteric & hepatic lymphangiogram. If there is an issue in the mesentery lymphatics then this imaging should show it. If it does show an abnormality then I believe there will be some kind of IR procedure they could try before placing me on extremely poisonous drugs. 
 

I just want all this to be over. I have no more fight left in me - I’m so weak. I can’t continue to get drained every 2 weeks, it’s physically and emotionally exhausting. I have no quality of life, as soon as the fluid is drained I’m filled within 2 days and the prolapsed organs just make things like walking unbearable, I literally feel like I have a babies head hanging out me with every step (sorry, I know that’s disgusting). 
 

The Prof in London is going to speak to Max Itkin from Penn to review my previous lymphangiogram but that one only looked at the central conducting lymphatics, I need all the lymphatics (so mesenteric & liver) to try and create the story of what the hell is going on. 
 

Hope you are both well :)

 

M

Hi Pat/Jim, 

Sorry for the delay in replying, I was waiting until I met with a professor in London. He thinks I have mesenteric lymphangiomatosis and this was described as being like an aggressive cancer that they can’t treat. I don’t agree with this as I believe if this was the case it would have been picked up on one of my many scans/tests/surgeries - I even had an exploratory laparotomy and everything appeared normal. They are talking about starting me on a MEK inhibitor however, I am going to push to have a mesenteric & hepatic lymphangiogram. If there is an issue in the mesentery lymphatics then this imaging should show it. If it does show an abnormality then I believe there will be some kind of IR procedure they could try before placing me on extremely poisonous drugs. 
 

I just want all this to be over. I have no more fight left in me - I’m so weak. I can’t continue to get drained every 2 weeks, it’s physically and emotionally exhausting. I have no quality of life, as soon as the fluid is drained I’m filled within 2 days and the prolapsed organs just make things like walking unbearable, I literally feel like I have a babies head hanging out me with every step (sorry, I know that’s disgusting). 
 

The Prof in London is going to speak to Max Itkin from Penn to review my previous lymphangiogram but that one only looked at the central conducting lymphatics, I need all the lymphatics (so mesenteric & liver) to try and create the story of what the hell is going on. 
 

Hope you are both well :)

 

M

Wow.  good luck to you.  i've never heard of mesenteric lymphangiomatosis; i googled it but not sure, still.  i don't know about MEK inhibitors just TKI inhibitors which we suspect was the cause of my chylous ascites.  It's been 8 months and after at least 125 paracentesis of my abdomen i'm so grateful to be done with that.  Still never got a diagnosis of what caused my problem... the lymphatic embolization that dr Kriegshauser did fixed the problem... 4th try worked!

I wish you the best.  I hope there's a treatment for you.

Jim

 

Michelle,

Sorry, I don't know how else to share the article with you. It is published under Urology. The keywords are: Ascites, Cirrhosis, Prolapse, Colpocleisis. I just googled prolapse due to chylous ascites and the article was near the top. It didn't work for me when I tried to access it from my response to you, but that is the correct address for the paper. I think you will have to do a search on your own if it interests you. Good luck!

Pat

Thanks Pat.

I think we need to get the chylous ascites under control before we look at anything else.

this condition is horrific!! 

Hey Pat/Jim, 

I hope you’re both well. How long after your procedures did it take for the ascites to ‘dry up?’

the most bizarre thing happened, I developed shingles so was prescribed anti viral tablets and I started to notice I wasn’t accumulating the same volume of fluid. It’s now been 9 weeks and I still have a tonne of fluid in there but it just doesn’t seem to be shifting so it’s hard to tell if it’s slowed or stopped and it’s just taking forever to reabsorb? I’m convinced this is viral related but the doctors just have no clue.

thanks,

michelle

That's interesting about the shingles angle.

In my case, my chylous ascites was fixed by a surgical intervention of sorts -- a (very careful) injection/embolization(?) of "glue" into parts of my lymphatic system connecting into my liver... the first three times did nothing, but on the fourth try Dr. Kriegshauser tried a different part of the liver and much to my astonishment it worked and I had no more accumulation of chylous fluid. Nothing short of a miracle for me -- i had maybe 120+ 140+ paracenteses over the preceding years.

I still have pleural effusions but they don't seem to be chylous and I'm generally asymptomatic though I to have about 1500 cc of fluid on my right lung... I'm going to get it drained this coming Friday... I'm pretty sure it will come back, it always has but I want to get the volume down just in case I get sick in the pandemic.

Still nobody has any idea what the cause of all this is/was... Cleveland clinc is pretty sure it was the Sprycel but that's just an educated guess.

Good luck to you!

Thanks Jim - were you drained before the 4th procedure? When I started to take the anti virals I probably had about 7L and I’d say I’ve still got roughly 3L but it just doesn’t seem to be going away? So it’s hard to tell if I’m still leaking some fluid and my body is absorbing some?

Yes, immediately prior to the procedure they took it all out or as much as possible.  I have not had one since -- i got an ultrasound a month later and none was needed.  I may have some left, but I'm a big guy so I don't notice it.  I don't know about the body absorbing it -- I didn't experience that over the years. 

Prior to the first operation I was getting about 7 liters every 10 days, then after the 2nd procedure it dropped to about 4 liters, 3rd procedure no change and the 4th procedure, almost a year ago -- stopped it completely. Nothing short of amazing.

That’s incredible. Prior to taking the anti virals I was needing a drain every 2 weeks where they would remove c.7L (I was always left with about 3L as it just wouldn’t come out) but I’ve not had a drain since 1st Sept - I’m the same as you I’ve had so many over the last couple of years. The doctors can’t make sense of why the anti virals have appeared to have slowed the fluid. I have my own theory - I believe I’ve had Covid but been asymptomatic and it’s somehow caused haywire within my body. It makes no sense how I went 32 years perfectly fit and healthy then all of a sudden this happens in May 2020 and we have no explanation why. I just wish these last few litres would go away, that way we’ll know if the problem has ‘fixed itself’ or if I’m still leaking fluid. 
 

When did the ascites start for you?

It started about 4 years into my CML (and 4 years of Sprycel).

I stopped the Sprycel and the ascites stopped but within 3 months of stopping the TKI my CML numbers got a lot worse so we (me and my oncologist) decided to start back up on the Sprycel at a very low dose -- 20 mg I think... really low... it managed to control my BCRABL numbers for the leukemia but the Ascites came back.

So two years later or three I stopped the sprycel again for many months and the ascites did not abate.

I switched TKI's to Gleevec and that make no difference.  The ascites was really bad I could not seem to process long-chain triglycerides (my assessment not the doctors)... I lost a lot of weight and even going on an extremely drastic Chylous Ascites diet (no more than 20 gram a fat a day) only made a 25% difference, if that, in the volume.  I said well my life is pretty miserable on this Chylous diet for only a 25% reduction, so I resumed "normal" eating and got a paracentesis every 7 to 10 days. My triglyceride numbers in the fluid were well over 900, so off the charts.

The third lymphatic embolization procedure that dr. Kriegshauser did slowed the fluid to about 4 to 5 liters every 10 days, and the fourth procedure in a different part of my liver (he "glued" in 3 different parts of my liver, I think...) that last one worked and the ascites just stopped.

Unfortunately, I gained back the 35 pounds but I'm almost 6'3 so It's not that bad.

Jim

OH -- my self-diagnosis with the inability to process long-chain triglycerides is accidental -- I started supplementing with MCT oil (medium-chain) and it was like rocket-fuel to my brain.  I think I talked to the doctor about it (not sure which one) and it seemed to make sense to them though I have no idea how all this works