Stents and HCC

[nashy2]

My husband has ascites and oedema which the scan shows to be caused by the original tumour blocking the portal vein. I wonder if anyone has had PVT and was it treated by putting in a stent as the treatment recommended by our oncologist is firstly diruretics and then an infusion of iron? The stent option was suggested to us (not mentioned by our oncologist) but there is little written about it where the patient has HCC. We appreciate that all invasive options have their dangers and that stents have been very effective for those with heart problems. Any input would be welcomed.

[WayCas Patient]

Hi. I have the same problems. The procedure suggested to me is a TIPS. There is some information in an internet search. Many pros and cons. I have not it done because a Beta blocker Nadalol has helped. Also, my body has formed several collateral veins from the portal vein. This has helped but would complicate a TIPS because the portal vein is more fragile and could be damaged. I hope this helps. Do your research and be your advocate.

Best wishes,

Wayne

[nashy2 Caregiver in reply to WayCas]

Hi WayCas

Thank you very much for your input and own experience, and responding so quickly to my query. As you so rightly write there are, to any procedures involved with cancer, pros and cons and that is very dependant on any number of other factors, and what research albeit complicated reveals. In our experience personal stories are encouraging but not necessarily indicative of the outcome for those undergoing any particular procedure. TIPS hasn't been suggested (we are in France) by our oncologist, or the stent, but we will continue with our research. But once again thank you so much for responding to our questions. We wish you the very best with whatever procedure you decide to go with.

[Curly_Girl Caregiver]

Dave had PVT that was treated with blood thinners, although they never really made much difference. When his legs started swelling, they had him wear compression socks and I had him lay with his feet up the wall to help relieve it a bit. The diuretics (he was on two of them) never helped.

He also had ascites, which he would have drained only to have it come back again, usually within 5 days. Finally he asked them to put in a Pleurx catheter so he could have me drain the fluid at home. He did talk about TIPS but they never got to that point.

It was a tricky thing because draining the fluid set off all kinds of electrolyte imbalances; however, not draining the fluid meant that he had trouble breathing and very low energy.

I'm not sure if this is what you mean by stent? In any case, Dave was very glad to have it and it was nice not to have to constantly have to go to the hospital for paracentesis.

[nashy2 Caregiver in reply to Curly_Girl]

Thank you for that information. It certainly sounds as if Dave went through some pretty harrowing procedures, but I am glad to know that you didn't have to go to hospital constantly. We want to avoid that as well.

Every bit of information from those who have had experience with the treatments that oncologists offer gives us a clearer picture and is most welcome. It is early days with the diuretics, so it is difficult to judge how effective the process will be. It doesn't seem to have any noticeable reduction on the oedema although the ascites does seem to have reduced somewhat. The stent is a different option though I am not sure Robin is eligible for this treatment, and was not suggested by our oncologist.

Once again thank you, much appreciated.

Nashy2

[DancingEyes63 Moderator Caregiver]

I'm so sorry to hear that Robin is having trouble with this. Back in February when Jimmy was still doing the immunotherapy he had trouble with the edema. His feet and legs were so swollen I had to cut his socks so he could get them on and go buy larger shoes. He could hardly walk. At that point, he was only on Lasix. He'd need on a Beta Blocker that GI had started but oncologist had him stop it previous to the edema. Both his PCP and his GI had both sent him for paracentesis because they felt he had ascites but ultrasound said nothing there. When I sent his GI a picture of his legs and feet, he immediately ordered aldactone to be added as second diuretic and also put him back on a different beta blocker. He continued with these medications after he stopped treatment and never really had a problem with edema/ascites until the last few days when his liver had shut down. Hopefully they figure something out that works because I know Jimmy's quality of life was really affected when he was going through it. ❤️❤️❤️Sharon Dixon

[nashy2 Caregiver in reply to DancingEyes63]

Hi Sharon - thanks so much for letting me know the situation with Jimmy. I'll pass this on to Robin. He is on a diuretic to see if this will help his ascites/edema and also he has just had a iron infusion as he was very anemic. Hopefully these will help, its the waiting that can really depress you. Thank you for your support and information - they are very important to those of us still experiencing the results of liver cancer on those we love. Every little bit helps. More importantlyI hope you are still OK and being well supported, although I am sure Jimmy no longer being there, is still very painful.

SusieB

[DancingEyes63 Moderator Caregiver in reply to nashy2]

Thank you Susie. Yes I have friends and family that are doing their best to help but honestly guess sometimes nothing helps and you just have to go through it. Jimmy had issues with anemia also. Please keep an eye on Robin's platelets too. During the immunotherapy - Jimmy's platelets dropped to less than 100 which was scary.

If I can help in any way just let me know.

Sharon Dixon

[bwpickard Caregiver]

My husband also had PVT and his responded to a Y90 procedure with significant reduction. He was on blood thinnerEliquis and diuretics throughout treatment. We had an excellent interventional radiologist who followed him closely and never mentioned any type of stent as an option. The only time he mentioned TIPS it was explained as a procedure to stop bleeding. We were fortunate that edema was managed through increasing and lowering diuretics and he required paracentesis only once following a second Y90 which caused temporary inflammation of the liver. Hope your husband has good response to the diuretics. Bonnie

[nashy2 Caregiver in reply to bwpickard]

Many thanks for that information. Presently the diuretic my husband is on doesn't seem to be reducing the fluid around his liver or the edema - only elevation seems to work for the latter. However, I shall certainly pass your husband's experience on to him Thank you once again and hopefully your situation will remain stable.