Aa
Post transplant 1/10/10, triple therapy TX yes/no??
My husband, 54, post transplant on 1/10/10, elevated ALT ans AST in April 2010, started dbl TX 135 pegasys and 600 riboviron, also Procrit 20,000 twice a week and Neupogen 300 once a week. He ended all treatment in December, 2011 as directed from MGH, as we had been referred to Mayo Clinic in AZ for triple therapy TX. MGH and our Vermont Hepatologist referred us to Dr. Hugo Vargus, at the Mayo Clinic in Phoenix, AZ in December, 2011. We decided to buy an RV and travel (bucket list style). We ended up here for our Apt at the Mayo Clinic, only to be told, they have never treated anyone post transplant that have not transplanted at the Mayo Clinic . . . Go figure!!! So the dbl tx ribo/peg was stopped in December, and Gary's labs blood wise have started to rise a bit, but his liver enzymes, BUN, alk phos, and viral load have gone up . . . VL is now 18 mil compared to 1 mil in December! We are trying to figure out if searching for another clinic to tx him with the triple therapy is a good idea or not. MGH is not using the triple therapy on their post transplant patients, don't know why, but they just are not....Any advise will be appreciated . . .
December 27, 2011 labs . . . VL 1.2 mil, Creat .9, BUN 10, Alk Phos 88, Mag 1.9, Pot 4.7, Alb 2.7, AST 31, ALT 23, Billi .3, HCrit 30.7, Hglobin 9.4, RBC 2.93, WBC 2.9, Plat 78.
March 8, 2012 labs . . . VL 18 mil, Creat 1.0, BUN 31, Alk Phos 160, Mag 1.7, Pot ?, Alb 3.9, AST 63, ALT 70, Billi .5, HCrit 41, Hglobin 13, RBC 4.1, WBC 3.9, Plat 85.
That is all I have . . . His mental status is slow, his ST memory is non existent, close to 10%, his irritability is high like a 8 out of 10, his insomnia is high, he sleeps maybe 4 hrs straight, if lucky (he takes Ambian CR 12.5 every night, Trazadone 100mg every night, and Remeron (Mirtazapine) every night) He still has insomnia . . . Gary is tired when ever you as ask him. He is eating more since stopping dbl TX. He also has had Type 2 diabetes since pre transplant, he is insulin dependent, He uses Novalog 70/30 mix twice a day, and regular Novalog short acting as needed.
Thanks to everyone who reads this and gives us their advice. We are feeling so unsure right now.
December 27, 2011 labs . . . VL 1.2 mil, Creat .9, BUN 10, Alk Phos 88, Mag 1.9, Pot 4.7, Alb 2.7, AST 31, ALT 23, Billi .3, HCrit 30.7, Hglobin 9.4, RBC 2.93, WBC 2.9, Plat 78.
March 8, 2012 labs . . . VL 18 mil, Creat 1.0, BUN 31, Alk Phos 160, Mag 1.7, Pot ?, Alb 3.9, AST 63, ALT 70, Billi .5, HCrit 41, Hglobin 13, RBC 4.1, WBC 3.9, Plat 85.
That is all I have . . . His mental status is slow, his ST memory is non existent, close to 10%, his irritability is high like a 8 out of 10, his insomnia is high, he sleeps maybe 4 hrs straight, if lucky (he takes Ambian CR 12.5 every night, Trazadone 100mg every night, and Remeron (Mirtazapine) every night) He still has insomnia . . . Gary is tired when ever you as ask him. He is eating more since stopping dbl TX. He also has had Type 2 diabetes since pre transplant, he is insulin dependent, He uses Novalog 70/30 mix twice a day, and regular Novalog short acting as needed.
Thanks to everyone who reads this and gives us their advice. We are feeling so unsure right now.
From: Clinical Care Options
Boceprevir or Telaprevir in Combination With PegIFN/RBV Improved On-Treatment Virologic Response Rates in Patients With Severe Genotype 1 Hepatitis C Recurrence Following Liver Transplantation vs Historical Treatment With PegIFN/RBV
Posting Date: April 24, 2012
Calcineurin inhibitor dose reductions required for management of drug–drug interactions
Boceprevir group
Cyclosporine dose reduced 1.3-fold
Tacrolimus dose reduced 5.0-fold
Telaprevir group
Cyclosporine dose reduced 4-fold
Tacrolimus dose reduced 35-fold
See: http://tinyurl.com/c49g346
You must register to view but it's free and easy and worth the time.
Boceprevir or Telaprevir in Combination With PegIFN/RBV Improved On-Treatment Virologic Response Rates in Patients With Severe Genotype 1 Hepatitis C Recurrence Following Liver Transplantation vs Historical Treatment With PegIFN/RBV
Posting Date: April 24, 2012
Calcineurin inhibitor dose reductions required for management of drug–drug interactions
Boceprevir group
Cyclosporine dose reduced 1.3-fold
Tacrolimus dose reduced 5.0-fold
Telaprevir group
Cyclosporine dose reduced 4-fold
Tacrolimus dose reduced 35-fold
See: http://tinyurl.com/c49g346
You must register to view but it's free and easy and worth the time.
Hello Allison. How are you? How's Garry? Keep thinking about you two. Best wishes-April.
Allison to be worried is very normal. You are stepping into unpaved road. But if you trust your doctor, if his answers to your questions are satisfying , if he's hopeful for Garry than I would concentrate on being with your husband and giving him love and support. I'm sure you are doing it already. You seem like a wonderful partner. He is lucky to have you.:) Allison, let doctors worry about the drug interactions. If this becomes an issue I'm sure they will quickly adjust the dosages. I wish you both all the best. You're doing everything you can. Love-April.
I'm sure this is all very difficult.
You want to help your husband regain his health asap.
The real problem is this triple therapy treatment is quite new, only approved for the general public about a year ago.
There is even less data to go on for post-transplant patients.
It sounds like you've looked into this quite thoroughly.
Please keep us posted about his condition and how he does.
Wishing you both the very best.
OH
You want to help your husband regain his health asap.
The real problem is this triple therapy treatment is quite new, only approved for the general public about a year ago.
There is even less data to go on for post-transplant patients.
It sounds like you've looked into this quite thoroughly.
Please keep us posted about his condition and how he does.
Wishing you both the very best.
OH
We have discussed this and the other patient they are treating has stayed on tac, but they just decreased the dose. Apparently it is working well. I am very concerned about it though. When we were at the Mayo Clinic in Scottsdale, our visit with them covered their idea of choice treatment. They had discussed a completely different choice. They were going to use cyclosporin in place of tac and they were suggesting treatment with boceprevir. I have done a lot of reading and we talked to our hepatologist back in Vermont that did one of the trials with incivik and he agrees with the choice for Gary to stay on tac and use incivik. The whole thing is nerve racking . . . as Gary is quite ill . . .
I had a transplant and though I didn't do the triple treatment ( being geno 2)
I know of other people who are geno 1, post transplant who are either doing the triple tx or preparing to do so.
Their doctors have had them switch to cyclosporin from prograf ( tacro) prior to beginning treatment.
One is at UCSF the same facility where Hector is treated.
This may be very important. I would strongly advise your husband not to begin before talking this over with his hepatologist.
He may have to delay treatment until his other meds can be correctly dealt with .
Wishing you the best of luck,
OH
I know of other people who are geno 1, post transplant who are either doing the triple tx or preparing to do so.
Their doctors have had them switch to cyclosporin from prograf ( tacro) prior to beginning treatment.
One is at UCSF the same facility where Hector is treated.
This may be very important. I would strongly advise your husband not to begin before talking this over with his hepatologist.
He may have to delay treatment until his other meds can be correctly dealt with .
Wishing you the best of luck,
OH
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
I will try to make some comments on your new recent posts so that you can understand what is "normal" and what is "not normal" meaning “typical” both pre and post transplant. We must remember each of us is a unique individual and will have out own path through liver disease and transplant.
“Pretransplant, he had hepatic encephalopathy bad, being treated with Lactalose and the antibiotic Xifaxan. 20 days before his transplant, he went into a coma and was on life support. His kidneys were failing, he was getting dialysis, and there was more, it was very traumatic.”
* Many transplant patients go through what your husband did. A very good friend of mine had the exact same experience. He had a MELD score of 43.
What was your husband’s MELD score pretransplant?
“So after his transplant, he continued on breathing tube, feeding tube, all outgoing tubes, and he did not come out of the coma for at least 20 more days, then he was in and out of consciousness for another 20 days or so. This started Christmas day 2009.”
* This is not normal. He had a difficult transplant. At the TP center I go to the mean time stay in the hospital is about 5-6 days after transplant. Your husband had very serious complications from his liver disease and transplant. The mean time in ICU is less than a day at my TP center. So complications must have arisen.
“He finally was able to leave Mass General hospital at the beginning of March, then was transferred to a Rehab facility in Boston for 3 more weeks. We did not return to our home until the first of April. Then home health nurses came to help us monitor him and provided PT and OT in our home for 6-8 months. He never fully recovered from this. . .”
* Yes, it is typical that he would need rehab (physical therapy, etc) after being in the hospital that long and being bed ridden for so long. To have taken so long to recover and then go to rehab indicates he had to adjust physically to the real world after going through the complications he suffered.
"He was a very strong man, ALL man before this took place. He now has turned into an old weak man that has very little life"
* I am very sorry to hear that your husband never appears to have recovered from his initial liver damage.
"His new liver is stage 3 fibrosis. As far as I know, his ammonia levels are not elevated. I did have them checked in December. There was a small 1.3 cm carcinoma on his original liver, but as far as we know, he does not have cancer anywhere now. I suppose that could be a possibility . . ."
* I guess you are very aware that your husband's donor liver is now being damaged very quickly by an aggressive form of hepatitis C? This is usually in good part do to high dosages of anti-rejection meds that he has taken to keep his body from rejecting his donor liver. That is why they are trying to treat is hep C. Unfortunately he will need another transplant in the near future if he can't clear the hep C. This is a terrible position to be in.
* Ammonia levels are a complication of End-Stage Liver Disease (decompensated cirrhosis) only. Not Stage 3. So that is not affecting him.
* Liver cancer does not appear until stage 4, cirrhosis not at stage 3 and has no symptoms until it is in its final stage. So again it has nothing to do with your husband's condition.
We must keep in mind that although we always want to have a transplant patient return to their old healthy selves post transplant the main purpose of transplant is to allow the patient to gain extra time that they wouldn’t have if they didn’t have a transplant.
In summary, your husband had serious complications before and after transplant that is why he never recovered from transplant. I am very sorry to hear that you are both burdened by this. My heart goes out to you both. The only way to understand what is happening with your husband now and to understand what happened before, during and after transplant. You must talk to his surgeon or hepatologist who managed his care during the transplant. They know the answers. It is just that the both of you don't. Formulate questions and make sure they communicate to you so you can understand it in terms that make sense to you. Don't be intimidated. It is their job to communicate his condition to your husband and yourself. Of course you have to ask first to get answers. This is the most important thing you can do! To understand where you are now and what you both are facing in the future. It sounds like you need concrete answers as you as speculating without the basic facts.
Advanced liver disease and transplantation are very complex issues. Not something anyone but a hepatologist at a transplant center could truly understand in all its complexities. What I know is basic on my own health status having hep C, End-Stage Liver Disease and liver cancer and all I know about transplants from my many friends who have had liver transplants.
So make an appointment with your husband's hepatologist at the transplant center and ask all the questions that are on my mind. I think you both will feel better knowing your husband's current health status and be better able to make the best choices for the both of you in the future.
NOTE: Some people do not want to really know what is happening as they would rather not know and just let the docs do their thing. Nothing has it's downsides too. When the issue is advanced liver disease and transplant it is never a bed of roses as I am sure you are aware. But I just want to warn you, you must be prepared to here bad news. Well as much as any one can be prepared for things we wish were not true. So please be sure that you do want to know. This is based on my own experience. For example the relationship between myself and my hepatologist is one of complete honesty no matter have harsh the reality. When she told be that I had to wait and get MELD exception points for my liver cancer or I would be dead within 2 years at most it was a horrible moment for me. Of course I lost it and starting crying in her office but she comforted me saying she would do everything in her power to keep me alive another year so I can get a transplant. I am sure you both have experienced your own the roller coaster of emotions as things tend to flip between hope and despair so many times.
My best goes out to the both of you.
Try to stay positive and strong when you can. Take it one day at a time.
Hector