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Author Topic: Anyone on the forum had the Y-90 treatment?  (Read 4498 times)

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Offline Anne A

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Anyone on the forum had the Y-90 treatment?
« on: November 26, 2017, 09:44:51 pm »
Doctors are going to do the mapping on me in the very near future to see if I can get the Y-90 radiation therapy in the glass beads. Two places in the liver. I've read the article posted here and the doctor explained in detail. Just wanted to hear from someone who's had the treatment . It will hopefully "buy some time". Any input would be helpful.
Female,67, treatment naive,Geno type 1, Diagnosed 2000,contracted late 1960s,AST108(10-35 u/l)ALT 58(6-29 U/L)Platelet-90

Offline Lynn K

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Re: Anyone on the forum had the Y-90 treatment?
« Reply #1 on: November 27, 2017, 05:40:13 am »
I think I am one of the few more advanced cirrhotics here but so far not that far along. Only had to have varicies banded back in 2012 that is about it.

I am assuming you have HCC. I did know someone who went through many different treatments for liver cancer and was eventually transplanted. But unfortunately he passed away last year after an accident.

Hoping you have good results sorry I don’t really have any helpful information.

I guess it is a secondary issue for you right now but have you been treated and cured of hep c?

Are you eligible for a liver transplant and what is your MELD? Are you getting exception points due to HCC?

Sending you a hug from across the miles.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Lynn K

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Re: Anyone on the forum had the Y-90 treatment?
« Reply #2 on: November 27, 2017, 05:49:28 am »
I just read through your older posts you were talking last year about blood clots inside your liver. So sorry to hear you liver disease has progressed.

What hospital as you working with? I hear the hospital in Gainesville is pretty good and also I have heard there is a Mayo hospital there somewhere in Florida now?

I used to live in Ocala back in the day.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Anne A

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Re: Anyone on the forum had the Y-90 treatment?
« Reply #3 on: November 27, 2017, 10:17:01 am »
Thanks for writing Lynn, thought you must know about this procedure . In Feb. I had four bands in the esophagus, one in the stomach. Yes, I've had Hep C for 40 yrs. with no symptoms . Treatment not useful now at this juncture. Doubt I can meet the requirements for the transplant i.e. money, caregivers, etc. not sure I even want to go through it. I'm with Fla. Hospital-they are first class in treatment. Have had so many tests to see if I could make it and results were very good. I still am fortunate not to have any health problems, can eat anything just small amounts. Energy is excellent. Get the new Meld score this Thurs. after review with the main doctor on my case. The Y-90 has risks but it's the best choice at this point. Your kindness is appreciated, the mental aspect is the hardest . Staying positive.     , Annette
Female,67, treatment naive,Geno type 1, Diagnosed 2000,contracted late 1960s,AST108(10-35 u/l)ALT 58(6-29 U/L)Platelet-90

Offline Lynn K

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Re: Anyone on the forum had the Y-90 treatment?
« Reply #4 on: November 27, 2017, 02:47:16 pm »
For most people hep c has few to no symptoms which is why it is called a silent illness.

When symptoms to arise it is sadly what you are experiencing the symptoms of advanced liver disease. I have read anout 20% of those infected with hep c after 20 years of infection will develop cirrhosis. For me I was diagnosed with cirrhosis after 30 years.

Of course none of that is important for you at this point.

Wishing you all the best with the procedure let us know how it is going

You are in my heart
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Anne A

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Re: Anyone on the forum had the Y-90 treatment?
« Reply #5 on: November 27, 2017, 04:04:28 pm »
Thank you. I will let you know how it goes, maybe help someone else with what happens.
Female,67, treatment naive,Geno type 1, Diagnosed 2000,contracted late 1960s,AST108(10-35 u/l)ALT 58(6-29 U/L)Platelet-90

Offline sickandtired

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Re: Anyone on the forum had the Y-90 treatment?
« Reply #6 on: November 29, 2017, 11:59:04 am »
My husband had it in July. They mapped him one day and did the procedure the next day. He ended up with a hematoma from a bleedout from the procedure. The hemotoma ruptured after we came home from the hospital and bled into his testicles and legs. He had to go back to the hospital and stay a few days. I felt like the procedure should have been spaced apart from the mapping a week or two. Also they cannot put you to sleep because you have to be awake enough to hold your breathe when he tells you to so you will feel a little pain. They give you something to relax you and then a local anesthetic. They can go in through your wrists which he will consider if he has to do it again. The procedure seemed to have worked as all his liver enzymes came into normal range. It did make his white blood cell count go very low, just something to watch for. They wanted to give him a shot of Neulasta to raise his white blood cell count but he refused it. His tumor markers came way down. Yeah! The first MRI was too cloudy to evaluate the size of the tumors. He had a 7mm and a 2mm tumor. He goes back next week for reading of the second one. The worst part for him was his testicles were black and blue and the size of a cantaloupe for 3-4 months. He would not even go back to the doctor until he could walk.

Offline Anne A

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Re: Anyone on the forum had the Y-90 treatment?
« Reply #7 on: November 30, 2017, 08:02:50 pm »
Wow, I so appreciated reading about someone who has had this done. What an terribly painful side effect to happen. The outcome is encouraging though. You are correct, my radiologist said two weeks after the mapping they will go in if that goes well. I have two tumors that are one point six in size and possibly another very small one. Depending on the lobes they may have to go in twice. Very afraid but this is the best case for now. A good diet of protein is important. I feel fine, it's strange and for that I'm humbled . Please keep me informed if you feel up to writing. Thank you so much.
Female,67, treatment naive,Geno type 1, Diagnosed 2000,contracted late 1960s,AST108(10-35 u/l)ALT 58(6-29 U/L)Platelet-90

Offline sickandtired

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Re: Anyone on the forum had the Y-90 treatment?
« Reply #8 on: December 04, 2017, 01:20:41 pm »
Anne,

I will send an update after we go back to the doctor on 12/7. Have they scheduled your mapping yet?

Sickandtired

Offline Anne A

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Re: Anyone on the forum had the Y-90 treatment?
« Reply #9 on: December 04, 2017, 08:03:55 pm »
No mapping date yet, I'm thinking we can wait until after Christmas. My tumors are one point six each another possible small one. I have Hep c and my liver is F4. If your husband has a better condition liver his time will be longer depending on various facts. I'm sure they told you both this . I don't think I'm going to have the transplant,is he planning that next?( If you don't mind my asking). Hope all goes well for all of us. Any information is helpful to me. Thanks again.
Female,67, treatment naive,Geno type 1, Diagnosed 2000,contracted late 1960s,AST108(10-35 u/l)ALT 58(6-29 U/L)Platelet-90

Offline sickandtired

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Re: Anyone on the forum had the Y-90 treatment?
« Reply #10 on: December 05, 2017, 09:57:00 am »
He is F4 and has Hep C. He is just biding time with the Y90. The doctor has discussed transplant but he is not eligible in the condition he is in. Tumor too big and inoperable. Hoping it shrinks enough for eligibility.

Offline Lynn K

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Re: Anyone on the forum had the Y-90 treatment?
« Reply #11 on: December 05, 2017, 08:27:55 pm »
I know of a fellow hepper who also had too large of tumors. They used an experimental treatment of alcohol abulation I think it was called which caused the tumors to shrink and he was able to be transplanted.

He was in San Fransisco at a University hospital real cutting edge stuff. It was about 3 years ago so might be more main stream now. I will see if I can find any of his old posts.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Anne A

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Re: Anyone on the forum had the Y-90 treatment?
« Reply #12 on: December 05, 2017, 10:19:29 pm »
Lynn, I never heard of alcohol abulation, sounds interesting if it works better than Y-90. As for transplant for me, I'm just not sure I can do it. Went to all the beforehand meetings with a "team" at the hospital. Also extensive tests to evaluate my ability to withstand the treatment. Good results except the MAC (micro lung infection) is still in there( without symptoms) but the head doctor wants me to take the treatment -which damages the liver.This will disqualify me more than likely. The post operation is VERY involved. Transplant is not for everyone regardless of the alternative. Not to mention it's easier to get a new liver that already has Hep C and treat that later on top of the expensive drugs one must take everyday.Not wanting to be a Debbie Downer or ungrateful but these thoughts play heavy on ones mind.  Thanks for your thoughts.Hope I didn't go off subject,or say too much.
Female,67, treatment naive,Geno type 1, Diagnosed 2000,contracted late 1960s,AST108(10-35 u/l)ALT 58(6-29 U/L)Platelet-90

Offline Lynn K

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Re: Anyone on the forum had the Y-90 treatment?
« Reply #13 on: December 05, 2017, 11:06:30 pm »
Just did a quick search apparently there are a couple of types
Radiofrequency ablation (RFA)
Ethanol (alcohol) ablation
Microwave thermotherapy
Cryosurgery (cryotherapy)

https://www.cancer.org/cancer/liver-cancer/treating/tumor-ablation.html

They sound like methods to possibly get rid of tumors and possibly avoid surgery.

Yes my friend did say better to keep what you were born with if possible but if you are in liver failure or advanced liver cancer sadly there is only one option if in need of a transplant.

Treatment for hep c is short term and very successful for most even those with advanced liver disease and should be covered by insurance. And yes I understand transplant anti rejection meds are for life although they can wean you off of some of those with time.

The wait time to get a transplant will depend on where you are due to availability of organs and need in your region but you can register in more than one region if you can travel to the other region quickly.

Of course the choice is yours but if you get to the point of being in dire need of a transplant I am sure you know what the alternative is. That may be the best choice for you I have asked myself sometimes what i would want to do if faced with that choice. Especially before I was cured of hep c. But still with having cirrhosis this still could possibly be in my future as well.

I would still go through the process to get listed you can aleays back out later but if you decide you want to have a transplant you will still have that option available.

I have heard most patients getting transplants have MELD scores in the 30’s even with exception points. Do you know your current MELD?

Best of luck what ever you decide.

« Last Edit: December 05, 2017, 11:08:41 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Anne A

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Re: Anyone on the forum had the Y-90 treatment?
« Reply #14 on: December 06, 2017, 04:12:21 pm »
Good information. My Meld score went from 11 to 8 just recently. The doctor said that means little when one has cancer in the liver. Yes, I did the tests to be ready if I go into failure. It's something we all have to face.        Thanks
Female,67, treatment naive,Geno type 1, Diagnosed 2000,contracted late 1960s,AST108(10-35 u/l)ALT 58(6-29 U/L)Platelet-90

Offline Lynn K

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Re: Anyone on the forum had the Y-90 treatment?
« Reply #15 on: December 06, 2017, 04:56:04 pm »
Are you eligible for extra points on your MELD score I think they are called exception points due to having HCC?
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

 


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