Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Hep C Discussion Forum -> On Treatment -> MRI NOT TOO GOOD!!!!
Post Info TOPIC: MRI NOT TOO GOOD!!!!
Dzdayscomin


Senior Member

Status: Offline
Posts: 471
Date:
RE: MRI NOT TOO GOOD!!!!
Permalink  
 

hepCFREEwanab wrote:

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



__________________

53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
wmlj1960


Moderator

Status: Offline
Posts: 1559
Date:
Permalink  
 

 I send my prayers also to you both. I certainly hope for a positive outcome!



__________________

60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

How To Create Your Signature / Forum Abbreviation Definitions

Support This Forum
TazKat


Senior Member

Status: Offline
Posts: 479
Date:
Permalink  
 

BIG prayers comin your way!! God is still working miracles. for sure!!!! keep the faith!!

Peace out

Taz



__________________

TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
Cinnamon Girl


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

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

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

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.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
hepCFREEwanab


Veteran Member

Status: Offline
Posts: 89
Date:
Permalink  
 

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

 

 

 

 



__________________

Genotype 1b, V/L  0! Finally got rid of the Dragon after 24 wks. of Harvoni.

EOT 5/10/15   - 4 wks. UND, 12 wks UND, 24 wks. UND!!! 
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.
Hep C Discussion Forum -> On Treatment -> MRI NOT TOO GOOD!!!!
Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.