Liver mets with ascites developing after starting chemo

Husband11

Has anyone any experience with ascites and venal occlusion that comes on only after starting chemo? My wife has ER /PR positive liver mets. Some are distinct tumors of approx 1 cm diameter, but some of it is diffuse. She had an MRI and biopsy before starting treatment with xeloda.

After 3 cycles of xeloda, the tumor markers are down to less than half of what they started at, liver enzymes are at normal range and the MRI shows the cancer is shrinking. But, at the end of the first cycle she developed ascites (no cancer cells in the fluid) due to portal hypertension. This has gotten progressively worse, as the cancer gets "better". Her Oncologist has not seen this before. This seems the opposite of what should be happening. The radiologist who interprets the MRI says there is narrowing of small hepatic veins, scar tissue developing.

It's rare, but there are reported cases of sinusoidal obstructive syndrome with chemo, but with xeloda its even rarer. Our Onc seems puzzled, and that scares me, as he may make a wrong treatment decision. My wife is currently taking 2 weeks off xeloda to see if this partially resolves.

What to do? If she continues the chemo and this venal occlusion / sos / portal hypertension gets worse, not only is it debilitating, but it could be lethal in and of itself.

We are trying to find a more experienced cancer center to assist. We might try John Hopkins, Memorial Sloan Kettering and MD Anderson, if they are willing to assist in a second opinion. Any suggestions on how to go about doing this?

Lovelife49

Timothy, I'm sorry to hear your wife is going through this. It sounds really miserable for her and very worrying for you. I haven't been through this myself, but hopefully someone else will come along who has. I am not familiar with the way Johns Hopkins or MSK do things, but for MD Anderson, you can go to their website and request a second opinion appointment and they will tell you what records you need to get together and then call you that day or the following day to get you scheduled. I think you could probably call their main phone line and accomplish the same thing without using the internet, too, if you prefer.

I think you're on the right track to want a second opinion. You and your wife will be in my thoughts and prayers for relief from the ascites and some good answers to your questions.

Kandy

I am very sorry your wife is having this trouble. I can imagine how confusing and worried you both must be. I would definitely get a second opinion to see what someone else thinks. I think you should be able to contact any of the facilities and request a second opinion. You probably should check with her insurance company to see where they will pay for her to go. Do be sure to get all of her medical records and have her imaging put on disc. I do not have any experience to offer any advice but I do hope that she is able to get this resolved soon. I wish her the best.

Husband11

Bump for some attention. Tumor markers continue to fall, yet ascites isn't decreasing. As stated earlier, it only came on with treatment, and has gotten worse. What is driving it?

HLB

Could it possibly be from chemo at an earlier stage? I had chemo in 2004 for stage 2 and ever since then I have been told my veins are very skinny and it's always hard to get blood. I have occasionally wondered if this will affect my legs down the road, or any veins for that matter. That is the only thing I can think of, but I don't know much about portal hypertension. I wonder if it would help to take an asprin a day if she is allowed. Or even anticoagulation prescibed by onc. It is worrisome when the doc is 😕, that's for sure. I wonder if a liver specialist would be able to provide some insight. I hope this gets resolved very quickly.

Husband11

Thanks. They are considering trying a blood thinner, but portal hypertension already increases the risks of internal bleeding. They need to scope her and make sure the esophageal veins are not already varicose. Now this assumes the problem can be fixed by thinning the blood, and that the current course of treatment isn't making it worse and should be altered.

Husband11

Bump to the top for some attention. Looking for anyone who has any experience with this happening.

Kiss77

Have you checked her albumin values? Reduced amounts of Albumin can cause ascites. Maybe she needs albumin transfusion.

Husband11

Thanks for that suggestion. Her albumin level is 29. Apparently normal range is 33-35. So, slightly low. Our unit system here in Canada may be different than you see for the quoted range on the internet.

RonnieKay

No experience here...just saying I'm sorry your wife is going through this...and hoping an answer is close.

Husband11

Thanks, its really puzzling to both us and our oncologist and his department. We sincerely hope that whatever the chemo triggered, it is reversible. The question is whether to continue the same treatment plan or not?

We are trying to get a referral to another province for a second opinion.