Aa
HCC
has anyone been diagnosed with HCC and gone through RFA treatment?
Just got home Thursday evening from OKC and tolerated both procedures ok but did have to have blood because platelets were to low for their liking.
Still feel kind of weak and have a funny taste in my mouth. They did the Arterial Chemoembolization Tuesday and RFA on Wednesday woke up with extreme stomach pain and they said that wasn't supposed t happen then my BP dropped to 60/44 the next morning. Said my baseline for enzymes hadn't changed. They really don't know why I have so much pain and its in my back but they did tell me it could be from the liver... I have 2 bulging discs in my lower back and that could be some. I had a good appetite until I got home and strawberry jello was the bomb! Go back July 28 for new CT and labs and will start treatment and he said go into transplant virus free hopefully. So I'm just resting and taking it one day at a time. That's all we can do right??
Still feel kind of weak and have a funny taste in my mouth. They did the Arterial Chemoembolization Tuesday and RFA on Wednesday woke up with extreme stomach pain and they said that wasn't supposed t happen then my BP dropped to 60/44 the next morning. Said my baseline for enzymes hadn't changed. They really don't know why I have so much pain and its in my back but they did tell me it could be from the liver... I have 2 bulging discs in my lower back and that could be some. I had a good appetite until I got home and strawberry jello was the bomb! Go back July 28 for new CT and labs and will start treatment and he said go into transplant virus free hopefully. So I'm just resting and taking it one day at a time. That's all we can do right??
I had my transplant on November 16th of 2013. I was removed from the waiting list for most of last year because my AFP levels were beyond transplant criteria. That is why I had 2 TACEs and 3 PEI to try to lower my AFP and kill most of the tumor. All the treatments failed and I was told in September that I only had a few months to live. At that point I figured I had nothing to lose and volunteered to try Cyberknife radiation treatment which is used for other inoperable cancers which as brain and bone. To everyone's surprise it worked bring my AFP down from over 1,200 to 377. I had a MELD score of 36 at the time and was number 1 on the waiting list. I got the called a week and a half later.
I am now the proud owner of my 36 year old female liver which has been treating me wonderfully. Haven't felt this good in at least 10 years! I was already list for my cirrhosis before developing HCC 3 years ago June 1st.
RFA is usually only palliative and serves as a bridge for transplant in patients with cirrhosis (as does TACE & PEI) so you want to get a transplant as HCC in time also cause other tumors to develop. Get your MELD exception points and watch them rise every 3 months. At first they go up fast then slow down but I imagine at OKC (?) transplants are done in the upper 20s so you won't have to wait too long thankfully.
I understand what you mean about pain meds but I needed them at certain times especially after my cancer treatments. I didn't have much nausea but after certain procedures I had extreme pain. Normally I didn't take anything for daily pain from my cirrhosis and would tough it out but after some of the TACE treatments when I'd awake after coming out of OR the pain could get crazy bad. Luckily because I was such a "frequent flyer" I knew all of the nurses in our Limited Stay Unit (we stay overnight so they can watch for anything usual to have post op) and they would do everything to make me comfortable. After the pain was under control I always would get really cold cranberry juice (lots of ice) and sometimes I would get them to get me a cherry popsicle. For some reason when on opiates that stuff tastes like heaven to me. And revitalized me.
What is your pain from? As pain is not common with either cirrhosis or HCC.
Yes, I also lived alone over the many years I waited for my transplant. It can be rough but then again the way I look at it I wouldn't have wanted anyone else to deal with what I had to go through. It got really ugly at times. Luckily I was able to control my ascites and HE well enough that I could manage myself and my friends would call me every day or come by to make sure I was okay.
If you have HE and other complications than you should be careful as it can be dangerous to be alone if your cirrhosis isn't stable. I had a few ER trips and one was a close call when I had a bowel obstruction due to a hernia from my ascites.
Let me know how you are doing and if you have any question that I can help you with. For good or bad over the 2 1/2 years I had HCC I pretty much had almost every thing that I person can encounter with HCC and cirrhosis.
On by the way I should say that you have a good chance of curing your hep C. I was one of the 61 folks in the Gilead trial that got Sovaldi approved for treatment of folks with HCC awaiting transplant. If you don't SVR as long as they treat you (so you will be undetectable) going into your transplant you have a good chance of not having recurrence of your hep C. I treated for 48 weeks with Sovaldi and Ribavirin but unfortunately because of was removed from the waiting list I couldn't get a transplant while treating and I relapsed. I have hep C know but my young female liver is handling it well so I have time to treat and I have no doubt I will beat it once and for all.
By the way here is the "bible" on HCC, diagnosis, treatments, all of it.
http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/HCCUpdate2010.pdf
Hang in there. You will make it through this nightmare and I can tell you that things here on the other side are even better than you can image.
Hector
I am now the proud owner of my 36 year old female liver which has been treating me wonderfully. Haven't felt this good in at least 10 years! I was already list for my cirrhosis before developing HCC 3 years ago June 1st.
RFA is usually only palliative and serves as a bridge for transplant in patients with cirrhosis (as does TACE & PEI) so you want to get a transplant as HCC in time also cause other tumors to develop. Get your MELD exception points and watch them rise every 3 months. At first they go up fast then slow down but I imagine at OKC (?) transplants are done in the upper 20s so you won't have to wait too long thankfully.
I understand what you mean about pain meds but I needed them at certain times especially after my cancer treatments. I didn't have much nausea but after certain procedures I had extreme pain. Normally I didn't take anything for daily pain from my cirrhosis and would tough it out but after some of the TACE treatments when I'd awake after coming out of OR the pain could get crazy bad. Luckily because I was such a "frequent flyer" I knew all of the nurses in our Limited Stay Unit (we stay overnight so they can watch for anything usual to have post op) and they would do everything to make me comfortable. After the pain was under control I always would get really cold cranberry juice (lots of ice) and sometimes I would get them to get me a cherry popsicle. For some reason when on opiates that stuff tastes like heaven to me. And revitalized me.
What is your pain from? As pain is not common with either cirrhosis or HCC.
Yes, I also lived alone over the many years I waited for my transplant. It can be rough but then again the way I look at it I wouldn't have wanted anyone else to deal with what I had to go through. It got really ugly at times. Luckily I was able to control my ascites and HE well enough that I could manage myself and my friends would call me every day or come by to make sure I was okay.
If you have HE and other complications than you should be careful as it can be dangerous to be alone if your cirrhosis isn't stable. I had a few ER trips and one was a close call when I had a bowel obstruction due to a hernia from my ascites.
Let me know how you are doing and if you have any question that I can help you with. For good or bad over the 2 1/2 years I had HCC I pretty much had almost every thing that I person can encounter with HCC and cirrhosis.
On by the way I should say that you have a good chance of curing your hep C. I was one of the 61 folks in the Gilead trial that got Sovaldi approved for treatment of folks with HCC awaiting transplant. If you don't SVR as long as they treat you (so you will be undetectable) going into your transplant you have a good chance of not having recurrence of your hep C. I treated for 48 weeks with Sovaldi and Ribavirin but unfortunately because of was removed from the waiting list I couldn't get a transplant while treating and I relapsed. I have hep C know but my young female liver is handling it well so I have time to treat and I have no doubt I will beat it once and for all.
By the way here is the "bible" on HCC, diagnosis, treatments, all of it.
http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/HCCUpdate2010.pdf
Hang in there. You will make it through this nightmare and I can tell you that things here on the other side are even better than you can image.
Hector
yes I believe it is only palliative care from what I have read and right now the tumor is is a good place. But that's not to say the next one may appear in another area not so good. I will start the new HepC treatment following that and scans every 6 months from there. If the virus clears then transplant will eventually happen. We have spoken before but its been long ago. So how close are you to transplant? thanks for your response and hope all is well . I have been on morphine the past yr but now it doesn't seem to be working so well I see Dr on Monday to discuss this, I hate relying on pain meds but I cant do anything while hurting so bad and I still live alone and take care of myself. Linda
Hi. How can we help you?
I had HCC for 2 1/2 years and needed a liver transplant 7 months ago to finally get rid of my cancer. Over those 2 1/2 years I had 4 TACE treatments and 3 PEIs (Percutaneous Ethanol Injections) plus radiation treatment. I had the PEIs instead of RFAs because RFA was too dangerous for me due to where my tumor was located. Between two bile ducts and next to my portal vein. In total I have had 8 different HCC treatments and am familiar with all aspects of HCC, its treatment and transplantation for HCC.
Cheers!
Hector
I had HCC for 2 1/2 years and needed a liver transplant 7 months ago to finally get rid of my cancer. Over those 2 1/2 years I had 4 TACE treatments and 3 PEIs (Percutaneous Ethanol Injections) plus radiation treatment. I had the PEIs instead of RFAs because RFA was too dangerous for me due to where my tumor was located. Between two bile ducts and next to my portal vein. In total I have had 8 different HCC treatments and am familiar with all aspects of HCC, its treatment and transplantation for HCC.
Cheers!
Hector
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