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Hep C Discussion Forum -> General Discussion -> Mt Sinai
Post Info TOPIC: Mt Sinai
Bills


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RE: Mt Sinai
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Tom Laura

Ive heard that news myself a few times  It really takes a toll on your outlook and a lot of questions  It's positive news they want to refer you to a trial. " they ain't giving up".  I think taking  some time to get over this and clear your system of the Poison sounds good.  If it were me I would definitely take time off the doctor scene except for finding out what all the verdict's are on the condition. very saddened to hear this But you'll get back up I hope something comes your way and for all of us. Thanks for posting this so we can keep you in our prayers.

Bill S 



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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

news


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Just another example of the incredible strength exhibited by this group. I look forward to a report on Tom's next step. For now, just enjoy life.



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
tomyboy


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He has had four biopsy's.....he has fibrosis.  I will let everyone know how he makes out.  Hopefully they will come up with less invasive treatments. We are nervous, but am sure doc will want to know all his symptoms and details as I know they follow incivek treatment users.  Thanks for all th

Update, we saw the specialist yesterday and he reports Tom's doctor here made exactly the right decision by taking him off of the treatment.  Even if he would of completed the four more weeks of triple therapy, he would of had over 38 weeks on continued treatment and his levels were too low.  I went loaded with a wealth of information I had learned here, treatments in the works, trials, and he knew everything I was inquiring about.  He doesn't want him to restart the treatment.  He has stage 4 cirohsiss which I didn't know.  He reports insurance usually won't cover another bout of treatment if first one was unsuccessful.  He had his blood drawn and an updated abdomen cat scan.  We will get these results shortly, and at least we will know what his viral load is.  We are both curious.  As of right now, we are waiting for approval for the non-interferon treatment.  Hopefully it will be in a year and a half.  He suggested to Tom if he would like, he could  give his name to his colleages' to possibly do a clinical trial when one becomes available.  Tom reported he wasn't interested.  so, as of now, we will continue to lurk around the site and comment from time to time.  We wish you all so much success in your future treament and hopefully most of you will beat this.  Good luck, and thanks for all the support. 

Sincerely,

Laura and Tom

 

 



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Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

tomyboy


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He has had four biopsy's.....he has fibrosis.  I will let everyone know how he makes out.  Hopefully they will come up with less invasive treatments. We are nervous, but am sure doc will want to know all his symptoms and details as I know they follow incivek treatment users.  Thanks for all the support.



__________________

Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

mallani


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Hi Laura,

Sorry about the failed Rx. Bummer. As hubby is 60 yo, do you know his liver status eg what are his biopsy findings?  This will play a big part in decisions about further Rx.

Retreatment with Incivek is probably not an option.  Some have been changed to Victrelis as this is less toxic. As low white cells are due to Peg and Riba, he may have to wait for an Interferon-free regime. Good luck.



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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
Cinnamon Girl


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Hi Laura, good to hear from you again.  It`s perfectly understandable that your husband Tom was feeling so down after having to stop tx at that stage.  He has really been through a rough time and it`s good to know he`s feeling more positive now and is well on his way to recovery.  I should think the best thing now for Tom would be to wait for new drugs to be available, but see what the specialist advises on Tuesday.  Other people may have more suggestions to add.

Best of luck, let us know how it goes, and please do feel free to drop by any time you like. smile  ~ Jill

ps- I`m moving this to `General Discussion`



__________________

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.

 

 
tomyboy


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Well this is laura back with my husband Tom.  Haven't been lurking on the site lately as I didn't want to add any more stress onto my  husband.  He was on the triple therapy incivek and couldn't complete the treatment after 8 weeks.  His level crashed and his doctor here made an appt at Mt Sinai in the city for a follow up of treatment.  I don't beleive the specialist will approve Tom to try again but I am hoping there may be something in the works that he may possibly have him try. Or he may tell him to wait for 2014 until something less symptomatic is available.  Like I said before, this was his third attempt at treatment and he is a genotype 1.  Our appointment is tuesday at 11:00.  If anyone has any thoughts or suggestions, or questions maybe I should be asking we truly appreciate it.  He has gotten over the deppression and poor me snydrome and is being to feel healthy again.  As always, hope everyone's treatment is going successfully.  I miss this forum,  and must continue to stop by.  Thanks all...you are all a wonderful wealth of support and information.  Happy new year.



__________________

Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

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