Liver mets: resection, ablation, SBRT, Y-90, anything else?
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ShetlandPony Yes I am home and I feel great. No pain. Thanks for thinking of me.
I went to hospital at about 10AM. My son was able to be there with me. He's an anesthesiologist, so I felt more confident with him there. The first two hours was prep and IV and all the pre-meds, etc. I kept telling the doc that I don't react to those drugs the way most people do...so the nurses in the surgery suite were very surprised I was awake and talking. It was a big room with a CT machine. They got me on the CAT scan bed. That's about all I remember. One of the nurses game me something, probably versed, and I was out. It took about an hour. Then, they took me back to my room and all my family was there. The only problem I had was that I started itching and scratching all over. They finally gave me three more meds ( I don't know what they were) but the itching stopped. I was having some sort of reaction but I don't know if it was from meds or the Y90 spheres. I had to lay still for three hours but they would not let me get dressed until the itching stopped.
I'm glad that is over. I don't think I will have as much anxiety as I wait for the next one. I have had no nausea so far, that's good. I'm picturing those tumors getting zapped. The next y90 will be in about a month. So far, it's been easy. I'll keep you posted with every detail, I promise.
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Grannax2 - I appreciate that you would take the time to provide this detail after a major procedure. I speak for myself and many other people who are reading this.
I am glad you are well and home and comfortable. I am so glad your family was with you.
For me it is really helpful to know that they can knock you out so you aren't aware for the procedure. I could not make it through that procedure alert.
Congratulations on having one procedure behind you. Picturing those tumors getting zapped ....
>Z<
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Grannax2-Glad to hear you are home and doing well. I was thinking about you yesterday and hoping for the best!
ShetlandPony- I am currently considered stable by my MO.
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Me either, Z. That was what miscommunication was about with the mapping. His office told me that anesthesiologist would be there and they would give me propofal and he had said I could be as out as I wanted to be. Then when I got to the hospital the truth came out. I was so upset. His staff needs to be trained better. He needs to listen better. He needs to believe his patient.
But, this time they gave me something different. Maybe I was awake some but have no memory of it. I did find out that they took me to another room for the procedure and then back to CT room.
I'll try to find out because I don't want you to have to go through what I did to get what you need.I know in the big picture, all I need is for this y90 to work. But, what happens on the way is important, too.
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Thanks Grannax - My problem is that if I am aware of what is going on, I pass out during the procedure. They can't continue because being passed out is different than being under anesthesia.
During my liver biopsy, my heart slowed down to less than 40 beats per minute and they had to shoot me up with something to get my heart rate up. My mind/body simply rejects medical treatment, if you give it any opportunity.
I'd appreciate the details of the sedative they used. Sound something that would work well. I just have to not care.
>Z<
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Z that sounds terrible and dangerous. My son was not happy about all the drama about doc and anesthesia. He said he has things like this happen all the time. There's been many times when he just changes the plan to help the patient. No big deal. So, it should be simple.
During my liver biopsy they had to intubate me because my stats were dropping too low. Probably from lung mets making it hard to breathe. But, they were equipped for that so it was not a big problem.
Oh how I wish for a perfect world where money and ego do not affect a patient's well being.
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My understanding is that after ablation, Y90 or targeted radiation there will be scaring in the area that was treated. I googled images of liver after treatment and then started down a reading and research pathway. My Rad Onc wanted to know if I would be in an MRI follow-up research protocol (the problem is they only look at the liver) to assess radiation changes to treatment area - I said sure but not sure if the ethics board will aprove the study in time. It appears that it is not always easy or a consensus on CT appearance 3, 6, 9 months post. I am glad I asked because I thought since livers regenerate that the area would fill with healthy tissue and have NED on report - not sure what it will say on next CT scan in June - Will need a CT to keep an eye on the rest of me which has always been clear...
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Bstein, an expert radiologist from a major cancer center told me that I would have to be followed with PET after liver radioembolization, because after the procedure it would not be clear on CT how well it had worked, dead tumors and live ones appearing the same.
For heaven's sake, with all the money and training, you'd think they could get things right with the sedation, and individualize it. These things really matter. They can make such a difference for us. Keep advocating for yourselves, my friends. Z, do you have a report on your biopsy adventure, so next time you can show them in black and white, written by the doc, what happens with you? They should simply believe you, the patient, but...
Thank you, Grannax. Now I know to get detailed information about sedation for the radio procedure. Especially after my interesting port installation adventure.
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Shetland - funny you should ask. The biopsy report mentions something in passing, like it was nothing. Made me laugh. But I do have it on file and I will mention it.
Advocate, advocate, advocate ladies. No one is looking out for you but you.
>Z<
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Pretty interesting stuff Grannax, appreciate your info and so glad all went well. I'm sure we will all be following you closely. Thank kaayborg and Shetland for the info too. I have my next appt coming up and plan to inquire. Shetland, the big center I want to check out anyway is UCSF. I have heard some very good reports about it.
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Day 3 post y90. I woke up to sharp pain in my right shoulder and chest when I try to take a deep breath. I think it might be sympathetic nerve pain. I did put a call in to my doc, then I read about another patient who had that.
My doc says it's referred pain from the liver. He said to just "power through it". I don't power through much these days. But, I'll get through it, eventually. Another day in the life.
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Grannax - that is scary to wake up to, but something that will pass. Sounds like a quiet day in bed for you.
Keep ups posted.
>Z<
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Grannax2- I had the shoulder pain also and it was one of the things my doctor had warned me about. So glad you are doing well. Get plenty of rest!
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Baby Ruth, yes the shoulder pain went away in about a day but not before another SE hit. Are there some things that are TMI on this board? Probably not. I'm calling yesterday diarrhea day.
But, today, day 5 post y90, I don't have a SE of the day. Yay. I even went for a short walk. And my taste buds are already better. I had a few days when nothing tasted right. If I keep feeling better, I plan to drive the 2 1/2 hours down to Temple to watch my grandson play T ball and my granddaughter perform in a dinner theatre this Friday. My grandchildren are the best medicine for me.
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Grannax - you have a wonderful day! I am thrilled you are getting better. The way things are going, I am confident you will get the grandkid time on Friday. Great goal.
Keep us posted.
>Z<
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yes grannax, jump in that car and seize the day! Maybe I will follow my own advice as well.....
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Artist, I think UCSF would be a super place to get an opinion. Z, my port installation notes did not say anything at all about my "waking up" incident, and I was unsuccessful in my attempts to talk to anyone who had been present. So I will just talk to the radioembolization people about it when the time comes. Grannax and BabyRuth, thanks for the info about side effects.
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Hi Ladies, it's day 7. One week out. Day 6 my short walk was a trip to the grocery store for an hour. By myself! That was my first outing and I was pretty wiped out afterwards.
My doc said No lifting of more than 5 pounds for a week. So my neighbor was kind enough to bring the groceries in. I'll go for a real walk today. I think most of you remember that I lost my husband 6 years ago, so I live alone in the home we built 31 years ago. It's challenging sometimes. Especially, since I was diagnosed this time. It's my first experience having cancer without Bob. My kids are great but they have their own lives and I hope I don't have to depend on them too much. It's a fine line to maintain. Also, my daughter, has a rare disorder called pseudo tumor cerebri PTC. It's also called idiopathic intracranial hypertension. Basically, a problem with the spinal fluid not being absorbed properly by the ventricles in her brain. You can just imagine the headaches that causes. She's had it 15 years, she's 45 now. There's no cure. Shunts usually help but she's had 8 shunts that all got infected and had to be removed. She's on her 9th now and it's been in place for 1 1/2 years without getting infected. But, it does not always help with the miriad of problems associated with this strange disorder. She is on disability and is able to work a very part-time job. All that to explain why I have to be very careful about asking her to do much to help me. She's the one who lives only 10 minutes from me and the one who gets the phone calls when problems come up. It's weighing heavily on me today as I brainstorm about ways to resolve the issues that come up unexpectedly with MBC and treatment.
Life just won't stand still while we focus on MBC. I often think it would be easier if it did, but I know that it does not work that way. My other challenge is a double edged sword, I live on social security income only. In regard to Ibrance cost, that's a blessing. Because of my very low income, I qualify for financial assistance/ foundations who pay every penny of my co-pay ($2700 a month) for Ibrance. I cringe when I read what others on this board have to pay. I never thought I would be so happy to have such a low income. Ha.
I am expecting that after my next y90 my life will have fewer crisis moments and I will return to some sort of new-normal that will be easier on my family and friends. I've only been able to think that way because of being on this board. Seriously, I don't know what my mind-set would be without my new friends here. It's not only the encouragement, but being able to write my thoughts here.....all of them.
It also helps to know that what I write here will not be read by my family and friends. Why? Because I think it would be too hard on them to hear everything that really goes on in my head. What I call writing therapy has always been useful to me. But, usually after I get it all out, I throw it it in the trash. Here I don't have to do that. And I get to hear encouragement, ideas for solutions and your stories. All of which come from you actually going through the same things I am going through. Invaluable.
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Thanks Shetland, I brought it up with my Onc yesterday and at first she said it was only for people with localized mets. When I mentioned I thought that a few ladies here have done it with a few small bone mets she said actually it MIGHT be something we should check into after my next scan in May.
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artistatheart I have multiple mets in three areas, lung, liver and chest. I was surprised but they did it for me. Medicare and Aetna are paying. I wonder what MO is thinking?
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Artist - Yup. We have to know what to ask about. This is why I study the forum ... to find out what the options really are. Good job raising the issue ..
>Z<
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Yes, you are one example I was talking about Grannax2. I will be following to see how things go. It only makes sense to me that reducing any tumor load can potentially delay progression. I have great hopes of utilizing any and every tool in the box to stretch this out for a very long time.
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My goal for recovering from y90 was a trip down to see my grandchildren. So, at less that 2 weeks out, I was on the road. I made it and saw Blake in a tball game and Aubrie in Dinner Theatre performance. I loved every minute. Drove back home and crashed. I guess adrenaline kept me going till i walked in my house, then the fatigue hit.
My next y90 will probably be May 24. My doc told my kids that the next time might be a harder recovery for me because he will use more y90. I don't know if that means there are more tumors in that lobe or if there's a cumulative effect? Does anyone know anything about that? I just have to be ready to drive down to see Aubrie perform in a play on June 10. It's Jungle Book and she's part of the huge snake Kaa. Evidently he has 5 coils and she's #5.
I think I will call today to ask him why it might be harder on me this time. I still wish I knew what med I had the allergic reaction to. In the report the only thing it said he did differently was the y90.
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Grannax - Please do pull the string on what med might have caused the reaction ... your little crisis may get lost in the shuffle. It happens all the time. Make them think about it and fix it.
You are doing great. I spent the weekend with a friend whose husband had local liver treatments similar to Y90. Recovery for him was really rough every time. Took weeks.
>Z<
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Grannax2-I am in awe of how fast you bounced back from the Y90! I did return to work the week after my procedure but I did not feel great. Luckily I had two weeks off around Christmas so I was able to rest during that time. I think you will do just as well your second go round.
I am glad you are doing so well and able to see your grand children. That is what life is truly about!
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Grannax so happy for you to be over the first stage of it. And as they say, spending time with the grandkids, priceless! I am aware of you going through this through Zar letting us know of different possibilities. How terrified you must have been to know that they were messing with your sleep
I wish they would wanna do something like this for Dani, so far they don't even wanna do a biopsy. She's got the whole liver covered with innumerable lesions. Some larger some smaller. And mild ascites. I think doc is just plain scared to touch her. Let's see after the next set of scans.
Counting down the days with you for victory!
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momallthetime How close are you to Dallas? I don't know if Dr Travis Van Meter could help with your daughter's situation or not. I think y90 has to be recommended by MO. His website is MTVIR. Dr. Van Meter is a interventional radiologist who specializes in oncology.
I wish it could be a possible treatment for your daughter, too.
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MomATT - I do think if you go to a specialist they will be more likely to proceed with local treatment of the liver; however, these treatments are generally for people who have only liver mets or primarily liver mets.
>Z<
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For those of you who have done liver radioembolization/Y90 -- How many weeks would you say it takes before you have enough energy for a normal day? Does it hurt to move? I really would like to know how to plan for taking/teaching dance classes and what kind of commitment I can make for performances in the next few months. My onc says that if my TMs go up again, after 4 months on the new drugs, we will not wait any longer, but will look at radioembolization.
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Shetland Pony At two weeks out I drove 3 hours, had a very busy weekend with family and drove back home. Then I crashed for a few days. It did not hurt much except for the first few days, now I still have fatigue. On Monday I will be 3 weeks out.
I don't think I would be teaching any dance lessons, ever! But, you, that's what you do. Maybe at 4 weeks out? But, at 4 weeks out you would have your second lobe done. I'd say maybe 2 months off.
My next y90 is on May24. I guess I'll know more after that one. I'm glad your doc is open for you to have this treatment if you need it.
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