My husband Angelo had an MRI and complete blood work done before starting Harvoni.
His blood test was pretty good, his tumor level marker went from 55.6 to 31.6.
His MRI however showed three tumors that did not show six months earlier.
His doctor was very surprised so he had the CD read by two more radiologistsith , who unfortunately agreed with the results.
Now we are scheduled to see a Liver Transplant specialist that we actually met last august at Mount Sinai...his name is Dr. Gene Im.
Our doctor said that Angelo will need chemo done directly into the tumors to shrink them and kill them. He also thinks that he should get on the Transplant list . I told him that his MELD score is only 10! It seems that with tumors you authomatically get bumped up to a 22.
Lastly, we discussed increasing the Harvoni treatment from 12 weeks to 24 to make sure the virus is totally cleared from his body.
How ironic that after the last treatment that was so bad for him, he was able to hang in there for a year and a half for Harvoni to be approved by the FDA, Start the treatment and do very well on it
( 2wks VL went down from 2,800,000 to 1, 331) and find this out!
I have so much faith in GOD and I know that if He brought him to this, He will see him through it just like He did for me during my Breast Cancer!
Can anyone give me more specifics on what is ahead?
Thank you.
MENA
Well it depends on the size of the tumors, he has 3 you said, you can get a great deal of info by looking up the Milan Criteria which deals with HCC and transplantation, the treatment you are describing is commonly called bridging. ..that is where they treat the tumors to keep them small enough to meet milan criterea if this wasn't done he would become ineligible for transplant. This is done with chemo,or nuclear medicine like Therasphere where they go in thru the femoral artery and inject the beads into the tumor areas to effectively kill off that area of the liver including the cancerous areas.
It Is really important to not let the total mass of the tumors exceed the milan critera for size.
Now on the MELD Score yes once established that HCC exists your score is elevated to 22 then the next MRI evaluation you should get 3 additional points and then 2 points at each follow up evaluation until you get your liver,regardless of being succefully treated for the cancer or not.
If he is not on the transplant list he needs to get worked up ASAP it is a 1 to 3 days of nonstop tests, some classes, and some immunizations but it is required, you must be drug,smoking,and alcohol free for 6 months prior in many cases, and once on the list you are prohibited from any of that sort of thing....in fact you pretty much may as well consider yourself done with smoking, drinking, drugs permanently as they will not waste an organ on someone that will in anyway jepordize the gift of life...they drill you on this fact pretty extensively.
Then the hard part begins, at least for me it has been, and that is waiting for something you need but don't really relish the idea of what it takes to get it ....meaning the whole operation and rehabilitation etc....
One bright side for him is that once you start getting the exception points it would be less than 2 yrs depending on the region you are in, in the MN area they are transplanting in the low 30s for MELD scores so for my case it should be 16 months max or by Dec.2015 and I've already been waiting over 2 yrs.
I don't like being on call not knowing when it will happen but that is the way it works.
Hope some of this helps.
Link to info on the Milan criteria below.
Duane
http://m.phys.org/_news199553785.html
wmlj1960 said
Dec 18, 2014
I send my prayers also to you both. I certainly hope for a positive outcome!
TazKat said
Dec 18, 2014
BIG prayers comin your way!! God is still working miracles. for sure!!!! keep the faith!!
Peace out
Taz
Cinnamon Girl said
Dec 18, 2014
Hello Mena,
I`m very sorry to hear this news, it must have been a big shock for you and Angelo and not at all what you were expecting at this point.
At least though these tumours have been picked up now and Angelo can have them treated. Better to find out now than further down the line, if that`s any consolation at all.
You`ve been through so much together and you`ll get through this too, and I`m sure your strong faith must be a big help. And you know Angelo is having good medical attention, that`s the main thing.
Do let us know when you have more details, and try to stay strong.
Sending heartfelt good wishes to you both. ~ Jill
mallani said
Dec 18, 2014
Hi Mena,
Sorry to hear that. Is it possible for you to post the MRI report?
By 'tumours' I presume the three lesions were HCC. Depending on the size, they may be treated by RF or embolic ablation. See if you can get some more details. Best wishes.
hepCFREEwanab said
Dec 17, 2014
My husband Angelo had an MRI and complete blood work done before starting Harvoni.
His blood test was pretty good, his tumor level marker went from 55.6 to 31.6.
His MRI however showed three tumors that did not show six months earlier.
His doctor was very surprised so he had the CD read by two more radiologistsith , who unfortunately agreed with the results.
Now we are scheduled to see a Liver Transplant specialist that we actually met last august at Mount Sinai...his name is Dr. Gene Im.
Our doctor said that Angelo will need chemo done directly into the tumors to shrink them and kill them. He also thinks that he should get on the Transplant list . I told him that his MELD score is only 10! It seems that with tumors you authomatically get bumped up to a 22.
Lastly, we discussed increasing the Harvoni treatment from 12 weeks to 24 to make sure the virus is totally cleared from his body.
How ironic that after the last treatment that was so bad for him, he was able to hang in there for a year and a half for Harvoni to be approved by the FDA, Start the treatment and do very well on it
( 2wks VL went down from 2,800,000 to 1, 331) and find this out!
I have so much faith in GOD and I know that if He brought him to this, He will see him through it just like He did for me during my Breast Cancer!
Can anyone give me more specifics on what is ahead?
Well it depends on the size of the tumors, he has 3 you said, you can get a great deal of info by looking up the Milan Criteria which deals with HCC and transplantation, the treatment you are describing is commonly called bridging. ..that is where they treat the tumors to keep them small enough to meet milan criterea if this wasn't done he would become ineligible for transplant. This is done with chemo,or nuclear medicine like Therasphere where they go in thru the femoral artery and inject the beads into the tumor areas to effectively kill off that area of the liver including the cancerous areas.
It Is really important to not let the total mass of the tumors exceed the milan critera for size.
Now on the MELD Score yes once established that HCC exists your score is elevated to 22 then the next MRI evaluation you should get 3 additional points and then 2 points at each follow up evaluation until you get your liver,regardless of being succefully treated for the cancer or not.
If he is not on the transplant list he needs to get worked up ASAP it is a 1 to 3 days of nonstop tests, some classes, and some immunizations but it is required, you must be drug,smoking,and alcohol free for 6 months prior in many cases, and once on the list you are prohibited from any of that sort of thing....in fact you pretty much may as well consider yourself done with smoking, drinking, drugs permanently as they will not waste an organ on someone that will in anyway jepordize the gift of life...they drill you on this fact pretty extensively.
Then the hard part begins, at least for me it has been, and that is waiting for something you need but don't really relish the idea of what it takes to get it ....meaning the whole operation and rehabilitation etc....
One bright side for him is that once you start getting the exception points it would be less than 2 yrs depending on the region you are in, in the MN area they are transplanting in the low 30s for MELD scores so for my case it should be 16 months max or by Dec.2015 and I've already been waiting over 2 yrs.
I don't like being on call not knowing when it will happen but that is the way it works.
Hope some of this helps.
Link to info on the Milan criteria below.
Duane
http://m.phys.org/_news199553785.html
I send my prayers also to you both. I certainly hope for a positive outcome!
BIG prayers comin your way!! God is still working miracles. for sure!!!! keep the faith!!
Peace out
Taz
Hello Mena,
I`m very sorry to hear this news, it must have been a big shock for you and Angelo and not at all what you were expecting at this point.
At least though these tumours have been picked up now and Angelo can have them treated. Better to find out now than further down the line, if that`s any consolation at all.
You`ve been through so much together and you`ll get through this too, and I`m sure your strong faith must be a big help. And you know Angelo is having good medical attention, that`s the main thing.
Do let us know when you have more details, and try to stay strong.
Sending heartfelt good wishes to you both. ~ Jill
Hi Mena,
Sorry to hear that. Is it possible for you to post the MRI report?
By 'tumours' I presume the three lesions were HCC. Depending on the size, they may be treated by RF or embolic ablation. See if you can get some more details. Best wishes.
My husband Angelo had an MRI and complete blood work done before starting Harvoni.
His blood test was pretty good, his tumor level marker went from 55.6 to 31.6.
His MRI however showed three tumors that did not show six months earlier.
His doctor was very surprised so he had the CD read by two more radiologistsith , who unfortunately agreed with the results.
Now we are scheduled to see a Liver Transplant specialist that we actually met last august at Mount Sinai...his name is Dr. Gene Im.
Our doctor said that Angelo will need chemo done directly into the tumors to shrink them and kill them. He also thinks that he should get on the Transplant list . I told him that his MELD score is only 10! It seems that with tumors you authomatically get bumped up to a 22.
Lastly, we discussed increasing the Harvoni treatment from 12 weeks to 24 to make sure the virus is totally cleared from his body.
How ironic that after the last treatment that was so bad for him, he was able to hang in there for a year and a half for Harvoni to be approved by the FDA, Start the treatment and do very well on it
( 2wks VL went down from 2,800,000 to 1, 331) and find this out!
I have so much faith in GOD and I know that if He brought him to this, He will see him through it just like He did for me during my Breast Cancer!
Can anyone give me more specifics on what is ahead?
Thank you.
MENA