Anyone Try Pegasys or Peg Intron more than once?

[TravelGrl]

Good Morning everyone...have a lot of mixed emotions about Amanda's next round of treatment...as most of you know, she has failed pegIntron (10 weeks), than immediatly went to Pegasys (12 weeks) and than daily infergen... all with Ribavirin 800-1000 daily.  Amanda has been off of all meds since November and seems to be stable...however she needs to start a new plan of action soon..probably the first week in August..We were thinking about adding the gamma (actimmune) three times a week to one of the interferons...most likely the daily infergen..but was wondering if maybe the Pegasys/riba alone could work this time  We are considering trying this again for a month or so.  Amanda's blood counts seem to be doing a bit better than before her last 15 months of treatment.  Wondering if the PEgasys could work if we start from the beginning with it...As I said, the last time she did pegasys, it was after 10 weeks of Peg and at that point her body and blood counts were already effected from the treatment.  Wondering everyones thoughts about trying again with the Pegasys before jumping into daily infergen with three times a week actimmune...Anyone respond to a peg the second time around after a taking a break?
  Also, Amanda's GGT is still extremely high (600's) anyone have a high GGT or know anything about this?  I have heard that this could mean fat on the liver...Amanda is a thin girl, so I don't think this could be the case with her...but not sure what else this could be...Her bile ducts seem fine which was another reason for elevated GGT..  
Hope everyone is well,
Jodi

[snook_man]

The PA in my doc's office told me that for non responders, and relaspers, they recommend highest possible dose. She says that they are seeing best response to peg2b, at 150, and 1200 mg of riba. She states that svr% is around 70. Also seeing great results with the ISIS Study, which is a drug given intravenuosly for two hours after like week 12. My PA does not like the infergen at all!! Hope it helps, and best wishes to your daughter. She is so strong to do this so many times. I'm trying to build up the courage to make it past one week.

[cc2]

I just wanted to say that Amanda is in my prayers and you too.

[Honey15637]

I agree that maybe Miles could help you out with this answer and guide you more so!  You and Amanda are both in my prayers and please let us know what route you decide to go!  God Bless!

[oldhippiechick67]

http://www.hivandhepatitis.com/hep_c.html

That site is full of info and articles, and at the bottom of the page is an index link to all articles by topic...
and this is same site, different link, where you can ask a question of the doctor - at the top of the page it says "this weeks questions, then "medical experts" and then "Ask a Question"  click on that.

http://www.hivandhepatitis.com/doctor/main.html

Best of luck to Amanda and you!   ohc/auggie

[Dirac]

I just would like to wish you the best of luck this time. I have been thinking about you and about Ammanda since I got to
know your story. I pray for you.

[TnHepGuy_]

Jodi - there is someone I know of (a Hep C patient awaiting 6 month testing) who has done research into alternative tx plans with the exisiting meds. From his research he has devised a theory of treatment that puts stong emphasis on achieving a certain viral rate of decline early on in tx, in hopes of quick suppresion and therefore better long-term SVR odds.

I don't know the validity of his approach (if any), but if you would like to read through what he has put together to see if you think anything may apply to Amanda's case - just send me an e-mail at yankee_in_knoxvilleNOSPAM***@**** (removing the NOSPAM part from the address, of course). If you do happen to send me an e-mail, just mention that you have here in a post since that address is a secondary one for me and I don't check it very frequently.


TnHepGuy

[susan400]

I've treated with the Peg-Intron twice. The second time I also was on daily reg. Intron-A with it.   I'm on my second time with Infergen, but this time I'm also on Actimmune(Gamma) with it.

Take care, God Bless.

Susan400

[TravelGrl]

Thank you all for your comments.

TNHepGuy,
  I will be sending you an email later tonight...Thank you.

Snookman,
  Can you tell me anything more about ISIS?  I have not heard of this before and would be very interested to learn more...I will also do a search on the internet...Thank you!

Revenire & Honey,
  Yes, Miles is actually a friend of mine..what a great guy..we met at the Boston Meetings last October and have remained good friends...Thank you. Still would love to hear a story of someone who has not responded to Peg/riba and tried it again and it worked...I really would like to give this another go with Amanda before subjecting her to "nuclear war" with daily infergen and gamma shots..

cc2,
  Thank you so much for your good wishes once again...You have continued to support Amanda and myself through so much of her treatment and we greatly appreciate it..

OHC & Dirac,
  Thank you both once again for your good wishes and support..It mean so much to us...!

Susan,
  Are you responding better with the gamma/infergen than you did with just daily infergen?  That was actually another question I had.  All the studies I have seen with people reponding to infergen/gamma have been Peg nonresponders...so in reality, they could be responding to the infergen and not the gamma...but since you have not responded to daily infergen, I am interested to see if the addition of gamma has actually made a difference...Would love to hear more of your story.

Thank you all again...

Jodi

[Nann]

Hi,
    I wish I had a good answer for your questions--but, I can only say that I started Gamma recently  and have been on first peginterferon and then pegasys straight for two years.  I have an appointment the first week of August and we'll see if the Gamma addition has made any difference. Pegitron worked well for me at first and then I relapsed and was put on pegasys but it  didn't really do much--So my doctor thinks Gamma might turn the tide.  I never took infergen--just the pegs--and I hope I don't have to go that route.  I have very low platelets and cirrhosis.  My doctor has me on .25 of Gamma which is 50 mcg. I guess.  It is half the syringe.  I take Gamma three times a week and a pegasys shot once a week.  The gamma has made me more fatigued than just peg.  But it is an easy shot to take.  What does Amanda's doctor say you should do?  Sorry, I am kind of rambling--Southernboy is on infergen and gamma and ribavirin.As of now, my doctor doesn't think I should be on ribavirin.  He is pretty cautious but really does his research.

[Nann]

I want to say that Janis and Friends website has information on the latest trials and has one article on infergen and gamma (actimmune).  Also, Dr. Carroll Leevy (who discovered
Actimmune with Larry Blatt) and articles on his research are on Google under his name. I will write  again when I get the results of the peg and actimmune in early August.  If your doctor approves you might want to start Amanda with a peg first.

[TravelGrl]

Hi Nann,
  I am thrilled to hear from someone that is on Pegasys/gamma..This will be our first choice if we decide against plain ole Pegasys/riba again.. We did go to see Dr. Leevy in Newark..he said we can do either combo...infergen or pegasys both with gamma..but suggested the daily infergen/gamma/riba because this is what they had the most research on...Honestly I don't really care about the research if their is an equal chance of responding with pegasys/gamma, I worry about how my daughter will be able to handle all of the interferon if she has to do daily infergen/gamma...So would really love to know if the addition of gamma to pegasys helps you respond...Please keep me posted.  Amanda also has cirrhosis and is only 16 years old...Please keep me updated...my email address is ***@**** wish you only the best and hope this round of treatment will be the answer for you...best wishes and
Thank you,
Jodi

[robbyrobb]

just my experience-- i did peg intron with no response. then did actimmune - gamma. suppose to do 48 weeks but the last month the sides got so bad (chills and weight lose and fatigue mostly) that i finished the 46th week and stopped. then did another biopsy and the results were almost the same as before starting - mild activity, grade 2 of 4........septal fibrosis stage 3 of 4  no granuloma ...hep c quantity 6 million ...ast 57...alt 37 i finished in december 03 and had the biopsy jan 04. now that it is almost 6 months, next week do all the blood work and have another biopsy and take it from there. i was really hoping the actimmune might be better and help. in my case it did nothing in the 46 weeks, except things could have probably progressed worse, who knows? i was hoping for improvement. i read this site quite frequently so decided to just give my story. my hepatologist went to a conference in san diego a month or so ago and doesn't see anything new in the near future. i've been studying BILN 2061 as i speak geman so have been reading the manufactures sites and don't see much hope in that. also have been studying all the trials here and it seems like we will be waiting a long time for anything really new. good luck to you all

[snook_man]

The study my PA is involved in is IDEAL, and ISIS. She says that the higher dose peg 2b is showing better responses overall. But the ISIS study is a drug in phase II trials. There are only twelve tx sites in the US, so do the search, and find a center if your interested. The patient does regular tx combo. At twelve weeks if VL has not dropped, they give you the IV drug ISIS, and monitor your blood for next 24 hours. They have been showing dramatic results with VL decreasing, then you continue with combo. I had done a search, and it came back with a list for this study, and also the thymosin, and list of tx sites by state. If I can find the site again, I will post it. Best wishes to you and your daughter..

[mikesimon]

I'm thinking of you and Amanda - always. Mike

[TravelGrl]

Robby,
  Just wondering if you did gamma with a peg or alone?  I did read that gamma alone did little if nothing in helping reduce viral load...can you tell me what your protocol was?

Snookman,
  Thank you for the info..I will do some research on the ISIS...it sounds interesting.

Chevy,
  Thank you again for your support.  Hope you are doing well.  Please keep us posted.  I appreciate your constant comfort/support to me as well as everyone else on the board.

Mike,
  What can I say..You have always been one of my biggest supports.  You always know when I am circleing again... Like now.. This has got to be THE hardest thing I have ever had to deal with in my entire life and I want to thank you for your friendship, support and constant comfort...I pray you continue to do well.. I know your anxiety level must be extremely high right now with stopping treatment...but I believe you have beat this beast for good.. I am always here for you!!  When you coming to NJ???

[cuteus]

Whoa, I forgot you are in the east! I was going to San Genaro's feast on 9/12 and am planning to meet another forum member there, do you ever go to the city? How far from Manhattan are you guys? This forum member goes to the Center for the study of hep c in Rockefeller. They have a pediatric unit. Is that your center also?
I hope to God some breakthrough comes for you and Amanda.

[Southernboy]

Hi Jodi,

I spoke with the docs at Mayo about your question regarding Infergen or Pegasys.  I don't think that anybody really has a definitive answer to your question right now.  If you recall, the study I am in is broken into two groups.  One half recieve Interferon Gamma-1b (Actimmune), Pegasys, and ribavirin.  the other half recieve Gamma-1b, daily Interferon Alfacon-1 (Infergen), and ribavirin.  Getting any information about the study from them is like pulling teeth. However, after much badgering, they did indicate that there was very little difference in response rates between the two groups.  I think that whether someone responds to Interferon Alfa-2a, Interferon Alfa-2b, or Interferon Alfacon-1 depends on each person's characteristics.  I hope that whatever you choose will do the trick.

Best to you and let me know if I can help in any other way,
Steve

[snook_man]

The link that I saw, that list trials by state. The isis study, and others are listed. WWW.centerwatch.com.. Go to the trial listings from there check by state. It is also listed on www.clinicaltrials.gov.. Wish you and your daughter the best, I hope it helps.

[Showboat]

You and Amanda sound like remarkable people.  My special prayer is that Amanda will receive the tx that will bring her to SVR this time.  It breaks my heart that she must go through another round of tx.  You, TravelMom, sound to be such a strong woman. Bless that sweet little girl....... and Bless you too.

[bunkywoo]

Just wanted to drop you a line to say I think about you and Amanda often and am always hoping to see your posts. Sorry things aren't changing much, but at least Amanda has been living somewhat normally for the past 8 months. Best of luck with a different approach. Love and prayers to you both.

Laurie

[TravelGrl]

Cuteus,
  I am about an hour from the city...Amanda's doctor is in Phili.  I would love to meet up with you both 9/12th...send me some details...Thank you for you good wishes...

Steve,
  I am sending you email..Once again thanks for the info...I am hoping you are beginning to respond better..Please keep me updated and know we think about you often..

Snook,
  Thanks for the site..greatly appreciate it

Showboat,
  Thank you, hope you are doing well..please send us an update.

Laurie,
  How the heck are you??!! I miss seeing you around here.  We took some time off from forum for a while...too painful to constantly be reminded of the reality of this disease...Glad to see your name pop up...Please let me know how you are doing..send me an email when you have some time...
Love,
Jodi

[gonagetbetr]

Jodi,
thank you for your earlier post. I appreciate your strength and pray for you and Amanda everyday. She is obviously a very strong girl.

my prayers are with you
Dottie

[cornsqueezer]

Hi Dottie, I hope your feeling well..did your blood work look good, my did.I've been having some extra pain in my joints after the 2nd shot, but once I get moving around it's ok.Let me know how you are doing.
Debra

[shebee]

Daily infergen seems to be easier than Pegasys or Peg Intron.
It is different...somehow.  

I think the anti-freeze in the shots might be harder than the shots themself?????

Just a guess here, but I have watched hubby for a long, long, time.  Could it be that it was decided that 1 shot weekly would be easier for mankind than doing daily shots?????

Just my thoughts,
Shebee

[TravelGrl]

How is hubby doing?  Is he responding better with the daily infergen?  Would love an update...Hope he is doing well

All my best,
Jodi