First of all than you to all who posted questions, their experience and words of support. This forum has been very helpful to me.
I wanted to know your experiences with TARE, as it has been recommended to my dad, who is 66. Here is my short experience w him so far:
He was diagnosed in Dec 2019 w HCC, a 8cm and a 2cm tumor.
In his case resection is not an option because of the size and underlying cirrhosis Child A (he no longer has HepC) and transplant is not an option given invasion of the portal vein.
His plan denied coverage of lenvima and he went 6 weeks without treatment. In early feb his tumor was 13x8x8 cm, right before he started lenvima.
6 weeks later the tumor had decreased to 10x5x3, the small one has essentially gone away. His next exam will be on 3/20 and we will see the response then.
His team is now recommending radioembolization which seems to provide great results for patients in these very circumstances.
Many thanks in advance for your help!
Mariana
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Sounds like he is making progress. This disease can be so scary, especially when struggling with insurance companies...so I’m really glad to hear there’s some good news.
That said, I have no experience with TARE myself, but hopefully someone else will be able to chime in with some useful information in that regard.
Just wanted to say thanks for dropping in and sharing your story. It’s ongoing, but quite hopeful.
Thank you so much for the support, spazure! It is indeed very scary and we feel in the dark in terms of what to expect. It's very helpful to hear from people who arebor have been on the same boat. Thank you!!
My husband, Dave, is very similar to your dad -- 64 years old, primary HCC with portal vein clot which took resection and transplant off the table. He was diagnosed in March of 2018. They actually began his treatment with Y-90 (TARE).
It took quite a while to get things moving treatment-wise (his care is through the VA and they are not particularly expeditious) and his Y-90 was in July of 2018. He had no issues with it at all and it did work well for him, it knocked the tumor back quite a ways. He was back at the gym probably about 10 days or so afterward.
He is still in treatment now, on Stivarga, and holding steady. His liver function is still fine and his AFP is down from around 4000 at the highest to around 250 or so today. The tumors are still there but are much smaller and we just take each day as it comes. I'm thankful that he is able to still go about his daily routine pretty much as normal.
We wish your dad all the best, and if you have any specific questions about the procedure, just holler!
Thank you so much for sharing, Curly Girl! It's so good to know your husband is able to maintain his normal routine and that his tumors are being kept at bay! Forgot to mention that my dad's AFP is down to 23, from 120 at the time of diagnosis. His liver function is Ok though he takes a medicine to reduce the rhythm of his heart pumping to avoid overwhelming his liver. Because of lenvima, though, he is constanly indisposed and is mostly resting all the time. It was great to hear that your husband works out!
I have 2 quick questions: any tips for recovery to do pre and post treatment? (E.g., Lenvima reduces appetite and my dad has lost a lot of weight and I read that TARE exarcebates that) and what was the response w your husbands treatment and did he only do it once?
Dave's tumor was reduced by about 75% after TARE, which we were really pleased with. They only did it once, but that might be because the VA does not actually do this treatment -- they had him go to the University of Michigan. Once the TARE was done, he was sent back to the VA and they didn't really do much until the following year, when they put him on oral chemo. (Frustrating, but we had no choice unfortunately!)
His initial chemo was Nexavar and that really messed with his appetite -- he lost about 20 pounds in 6 months -- so I understand your concern with your dad losing weight. Honestly, Dave had no issues with food or weight loss from the TARE. He was nauseous the first couple of days afterward, so they gave him medication which he took for maybe a week and then it went away. A lot of resting that first week, because you don't want to disturb the blood clot from where they access the vein. (He had to lay flat for a number of hours after both the tracing procedure the week before, and the actual procedure.) I think the only thing he changed was to not do weight lifting or the squat rack at the gym, again to make sure the wound healed well. He was able to do cardio though.
Beforehand, I don't remember him doing anything special other than to not take certain medications before the procedure. His appetite was normal the night of the procedure and the following morning. He was lucky that he had no issues with it, really!
My apologies - it seems my reply didn't go through and I did not realize that!
Thank you so much for giving me this additional info, it is good to have a better idea of what to expect and I am happy to know it was a realtively positive experience for you and Dave. I hope ours will bring similar results.
Thank you, Andrea. The health plan is currently providing his Lenvima. I hope nothing changes but if it does, I will be sure to reach out to Eisai. Thank you for the info!!
Mariana, Hi to you and Curly_Girl as it sounds like your dad and her husband and mine all have had similar presentations with HCC. My husband also had TARE as part of his initial treatment in April 2019 and had a great response with killing the entire tumor including the extension into the portal vein. There was no prep for TARE other than stopping Eliquis (blood thinner for the portal vein clot) and off Lenvima a week before. He had a mapping prep procedure the week before the TARE which assess the circulatory access. After TARE, he had some flu like symptoms 2nd week that resolved. When he had repeat TARE end of January, we noticed weight gain and he developed abdominal ascites and had to have this drained early March. He had been on long term diuretics before this but this was the first time he had abdominal fluid accumulation and it was felt to be due to inflammation/irritation of the liver. It has not recurred so far.
My husband is 64. I outlined our story with asking about experience with insurance company denial as a new treatment were seeking in April denied. In addition to tumor 8cm, He had smaller nodules closely monitored which shrunk initially on Lenvima started at same time as TARE. AFP was 64 and went to normal. He did lose appetite, taste for food and 60 lbs on Lenvima. He also had diarrhea so activities were limited due to this though he continued working. In January it was determined he had active tumor around the periphery of the large dead tumor and smaller nodules were growing. Lenvima stopped, put on immunotherapy Opdivo. His AFP was 27. He had repeat TARE end of January. AFP started increasing, dramatically to us, since it had never been above 64 and went to 117, then 172. Repeat scans showed TARE was helping with killing the periphery of tumor but the smaller ones were still active. Nexavar added 10 days ago at 1/2 dosage to try to minimize side effects. Opdivo continued as oncologist had seen case study where it helped reduce side effects. Liver function remains normal except elevated alkaline phosphatase which has always been elevated and his AFP has gone from 172 to 88 since starting Nexavar.
Hope you got encouraging news at the April 20 appt and that your dad has as good as response as my husband and Wendy's!
It's so encouraging to hear of your husband's great results with his first TARE. It's unfortunate his tumor activity returned but I'm happy to hear that AFP has drastically reduced once again!
My dad's imaging will now be done on the 27th. However he has a new blood exam which shows AFP down to 8 (last time was 23 and the first exam was 113). He os doing relatively fine on Lenvime so far, though he has appetite issues and digestive issues (constipation leads to laxatibe which leads to diarrhea) so similar to your husband his activities are limited given his feeling indisposed. It seems it will take a.long time for his TARE to be approved but we are hopeful. Many thanks again and all the best to you and your husband with this new stage of treatment!
Hey All! I'm Dave (Wendy's husband). The thing that works for me to control the constipation and diarrhea is chia seeds. I take a half gallon juice bottle, fill it half of water and pour in 10 tablespoons of chia seeds. Add a couple of those flavor tubes to taste and shake it up every 10 minutes for half an hour. Stick it in the fridge. I use about 4 oz on my oatmeal in the mornings when I'm taking the chemo and I drink another 4oz in the afternoon. We get our chia mostly from Walmart (Better Body Foods Organic Chia Seeds) but you can find it anywhere. Has a LOT of fiber and I think chia is considered a superfood. I haven't taken anything for constipation or diarrhea in months.
I've had hcc for about 2 years now. At the worst, I had 3 tumors in the liver and 5 in the chest. AFP got up to 3800. Labs last week were AFP 150 and 2 small tumors in the chest and one in the liver. Still have the PVVT but that is resolving as well.
Hi, Dave! Nice to e-meet you! Thank you so much for taking the time to give me these tips!! I immediately shared them with my dad. Digestive issues are one of the top issues and I am so happy that we may have found a solution I am very thankful to all of you for sharing your experiences with us. This is a blessing and really maskes us feel fortunate to be part of this forum.
My dad had his imaging done but because of some mix-up we still haven't gottent the results. I'll update here once we do and once we hear from the plan on his TARE approval.
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I am very thankful to all of you for sharing your experiences with us. This is a blessing and really maskes us feel fortunate to be part of this forum.
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