Pat, I tried to view it without being logged in and it didn't work. Here it is in a cut and paste form:
logisnews (LLS Community Member)
January 22, 2019 at 6:44 PM
This is gonna be a long message. Let me see if I can do a readers digest version.
*CML for 8 years. Managed quite well with minimal dose of sprycel (100 then 50 then 20)
* MMR for much of that time, sprycel worked like a champ. However...
* Something gave me chylous ascites... more and more chyle fluid leaking into my peretoneal cavity, 3, 4, 5, 6, 7 then 8 liters of chylous fluid would be removed. Also caused pleural effusions but never got that removed.
* Jan 2016, since I was in MMR, discontinued 50 mg dose of Sprycel. Ascites vanished, pleural effusions disappeared.
* April 2016 Leukemia came back, BCRABL numbers through the roof.
* May 2016 Oncologist RESTARTED Sprycel 20 mg dose.
* Next 6 months BCRABL numbers diminished, finally managed to get back to MMR using 20 mg dose but the chylous ascites returned but not enough to drain safely with paracentesis.
* 2017 leukemia numbers continue to look good, chylous fluid continue to worsen.
*2018 fluids getting really bad now, starting paracentesis every couple months, then every month, then every couple weeks, gaining chylous fluid at the rate of about half a liter a day.
*2018 late 2018 getting even worse. Stopped sprycel in August to see if the ascites would abate again, it did not.
*Sept 2018 lost MMR, numbers started rising quickly.
*Oct 2018 numbers going up by log levels getting worse rapidly
*Nov 2018 still not on any TKI drug, BCRABL numbers going "hockey-stick" on the graph
*Nov 2018 oncologist puts me on new TKI, Bosulif
* Nov 2018 BCRABL numbers start responding to Bosulif, Chylous Ascites still raging.
*Dec 2018 Bosulif side-effects, nausea, headache, bad cough
*Dec 2018 Switch to major cancer hospital from local oncologist. The hematologist at this new institution can't believe they put me back on Spryel. They conduct their own paracentesis and as I'm getting on a plane to new york they called me up and told me to go to the nearest hospital. Something is really wrong they say, I have a "raging infection" (or so it seems).
New Years Eve -- I get off the plane and fly back home and am admitted to this major hospital.
A dozen different doctors examine me convinced I have TB, SBP, Heart Failure, Liver Failure, Lymph Failure, Valley Fever and a whole raft of other things. A gazillion dollars worth of tests later and no smoking gun.
Jan 2019 - Released from hospital told to get bi-weekly paracentesis (if you've ever had one it's not the funnest thing to do twice a week).
The only thing not eliminated is the 8 years of TKI therapy with Sprycel. The doctors at this new hospital took me OFF the bosulif and now my numbers are climbing skyward but I presume they have a plan should it get out of hand.
I never started my CML thereapy with Gleevec, I went right to Spryel because I have had a heart-failure problem in the late 1990's and while my ejection fraction improved over the years (it's now in the mid to upper 40's) it's still a concern.
I am on a ton of blood pressure meds and my systolic BP rarely exceeds 100.
So they're still researching what to do with me, and I can't help wonder about the correlation/causation thing -- the first time I stopped the sprycel the fluid problem stopped immediately and didn't return until sprycel was restarted.
My original oncologist in Seattle referred me to this article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5863006/
Which to put it bluntly scares the crap out of me. I've always considered my cancer my number one problem... not anymore. This article talks about mortality rates of 40 to 70% for non-traumatic chylous ascites. Shit, nobody seemed even concerned until just now This is a bigger fish to fry, but have no idea where to start.
Other random factoids out there:
* I had cervical spine surgery in August of 2016 where two of my vertebrae were fused and titanium wings put in between c3&c4&c5. They wanted to do a triple but I said no. (My wife is a quadripelegic since 2016 when she fell on the back porch breaking her neck while looking for our cat. I'm her principal caregiver... which is a whole 'nother dimension to all this).
* Been on beta-blockers, ACE inhibitors for nearly 18 years... statins for 15 years. Dieuretics for 18 years.
* Used to be obese (6'3 275 pounds) dropped to 250 then to 230 and now range between 201 (post paracentesis) to 225 (when I fill up every week or so). So I gain roughly 15 to 20 pounds a week, for every freaking week of my life.
* If I don't get the paracentesis fluids spill into my tissues, then lungs then around the heart. I'm assuming these are not chylous fluids, as far as I know that's just around my abdomen and lungs... but still fluids have to go somewhere.
So so much for the readers digest version, this is as succinctly as I could put it. the internet doesn't yield much on this, which is amazing. I could google the most obscure topic like "why do men marry their hamsters..." and come up with more hits than this.
This is all quite surreal and while I'm leaving it to my new oncologist at this world renowned institution to work on this, what the heck it doesn't hurt anything (except my privacy) to post something here.
I am very angry that nobody took this problem seriously until I shifted to this new hospital/cancer center. They were incredulous that I didn't know WHY this was happening, of course now, more than 100 medical tests later including some real odd-ball ones like a lymphcentigriphy, they're left were I was -- well, "maybe? it's the sprycell?" But I've been off it since August.
So here I am attempting to crowd-source ideas on this. I need Dr. House from the TV show, although my new oncologist is a well known researcher and med school professor at a top med school and has lots of connections with Sloan-Kettering and other places, so I'm trying to sit tight.
Thanks everyone,
jim
10 comments
4 views
Tim Hughes (LLS Community Member)
3 years ago
Sorry to hear about your issues. I was on Sprycel for a little over a year and I had fluid drained from my lungs more that want to remember. I had to fight with my oncologist to get me off it and on to something else. Sprycel has a history of fluid around the lungs. Hopefully, they'll come up with something for you.
hannibellemo (LLS Community Member)
4 years ago
Jim, wow! I am fascinated with your story as I was just getting ready to post about my continuing pleural effusion saga which has turned into a non-specific pleuritis issue and I will be followed for at least a year to be sure this doesn't become mesothelioma. They don't really expect it to but I wasn't expecting to be here after 10 years! There is something really important going on with Sprycel and fluid build-up over the long haul.
I was given an indwelling catheter that allows me to drain pleural fluid so I don't have to have frequent thoracentesis. I believe they do the same for ascites. Have they mentioned that to you?
Here is the link to my first thread: https://communityview.lls.org/statuses/5175 I am continuing the story here:
https://communityview.lls.org/statuses/5443 although I haven't posted for over a month.
Many of us have had pleural effusions, I've not heard of anyone with a story like yours. Please keep posting!
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logisnews (LLS Community Member)
4 years ago
Thanks, funny you should mention mesothelioma -- one of the reports said something about mesothelial cells... with all the tests i dont remember exactly what it was.
I have had effusions and ascites but it's always been chylous fluid, never "normal" fluid. All fats, neutrophils... tryclicerides approaching 4000, so hugely concentrated. Not that I know what all that means. I will check out your post. thanks. Jim
hannibellemo (LLS Community Member)
4 years ago
Jim, a good friend is visiting us this week and I mentioned your post to him. He was head of liver services at UCLA until his retirement a couple of years ago. Feel free to Google him, B.A Runyon, M. D.
Where are you located? He suggested you go to Mayo - Rochester if you can. There is a physician there who focuses on chylous fluids, Patrick Kamuth, M.D. He also wondered if you have been evaluated for a peritoneal venous shunt? As Bruce explained it to me, all the fats from the foods you are eating that should be absorbed by your body are being dumped into your belly. (Simplified for me.)
It does sound, from that article, that you should be followed closely, and to me, I would want it to be someone who specializes in your problem.
I do like Mayo and I like my physicians, I've never had so many physicians call to check on me as I have there. They really do seem to go over and above.
Good luck!
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Trey (LLS Community Member)
4 years ago
Chylous Ascites has been reported as a side effect of Sprycel. Bosutinib may also cause it, but that is less clear. It may be under-reported since Pleural Effusion can mask the issue unless the docs know what they are looking for (milky fluid from the thoracentesis plus triglycerides, mesothelial cells etc). You should be switched to Tasigna. Oncs have an overly inflated fear of Tasigna in patients with heart issues, but the heart issue is specific to QT elongation which most do not have:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4439910/
https://www.researchgate.net/publication/324144758_Dasatinib_increases_e...
logisnews (LLS Community Member)
4 years ago
Wow... thank you to both of you. Yes, in understand the QT interval issues well, and that's not a problem with me. Wow. thanks. Hanibell (?) thanks for the referall on the chylous ascites doctor at the Mayo in Rochester. that's great information. Wow, thank you BOTH sooooo much. Jim
logisnews (LLS Community Member)
4 years ago
i passed this information on to my oncologist at the Mayo clinic... this is so encouraging for me. Met with the cardiologist this morning and he's thinking what I'm thinking that this is a result of a multitude of factors -- my (mild) right heart failure, my CML therapy and who-knows-what-else, but it may not be one smoking gun in all this. I like the idea of the Tasigna and will ask my doctor about this when I find out what his suggestion is going to be about restarting my TKI therapy.
Isla D (LLS Community Member)
4 years ago
Good luck Logisnews!
Mark T. (LLS Community Member)
4 years ago
My only question/suggestion would be why not try Gleevec, unless it has cardiac issues associated with it. It's fine that Trey is always so confident of his own medical advice, but the fact is that Tasigna has a moderate risk of arterial occlusion events that should be weighed off against benefits and side effects of both Tasigna and Gleevec.
logisnews (LLS Community Member)
4 years ago
Hey everyone. Thank you. My oncologist was one of the research team that game up with Gleevec (as I understand it) so it wouldn't surprise me if he DID recommend this. I am getting a bit nervous though it's been 3 weeks since my last BCRABL and that was at .3 and climbing; so I'm hoping I'll hear from him soon. Jim
