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Author Topic: Did not make it into drug trial!  (Read 10076 times)

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Offline terih

  • Member
  • Posts: 74
Did not make it into drug trial!
« on: August 30, 2015, 12:46:22 pm »
Hi, everyone!

First of all, I'm not sure where to post this, but since I've mostly posted here, here goes! Sorry if this is in any way a rambling mess, but I'm really scattered lately!

I've found out that didn't make it into the trial because I have liver cancer, talk about your 1-2 punches....

The first Doc (Dr. Putz) I went to for treatment failed to tell me that something was found on the MRI, that he had done! I guess HE didn't think it was important...... so it has had quite a while to become a golf ball sized tumor. It is next to the portal vein and is starting to block it. So thanks Doc!

The good news is that my new Doc (Dr. Fabulous!) thinks it is quite treatable! He and I discussed many options the other day, but right now my case is being reviewed by the whole panel of cancer Doctors to decide on the best way to proceed. In the morning I'll be at the transplant center, being evaluated, at 7a.m. (why 7? like they think I can be awake at that time, lol!)
Thank you for voice record, iPhone!

Sorry to burst in here with bad news, but I want to say to each and every one of you, ask point blank questions about your tests! Don't make the sorry assumption that I did, that they will just tell you!!!!

I want all of you to know, that I'm holding up pretty well and moving forward as best as I can! I'll try to update as I go along.

Since I've been in no posting mode for a while, a HUGE congrats to all who have made it to SVR and I've still got my fingers crossed for everyone still waiting and for everyone who is still treating! Best of health to you all!   Teri

P/S sorry for any typos or misspellings and such!
64 yrs. on this fine planet!
diagnosed 1993
Stage 1 cirrhosis
Genotype 1a
12 wks. Harvoni  Relapse late Feb. 2015
Currently treating with Solvaldi/Olysio
The light at the end of the tunnel, is often not a train!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Did not make it into drug trial!
« Reply #1 on: August 30, 2015, 12:54:11 pm »
Hi Teri. I'm so sorry to hear the news about your liver cancer - and that you don't get at spot in the drug trial. But that's excellent that your new doctor thinks it is treatable. It sounds like you are now getting proper medical care and attention, and from competent doctors. Good luck to you Teri! I look forward to your updates.

Hugs,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline terih

  • Member
  • Posts: 74
Re: Did not make it into drug trial!
« Reply #2 on: August 30, 2015, 02:32:16 pm »
Thank you, Kim!

I'm counting this as a blessing in disguise, if I hadn't relapsed on Harvoni, I never would have made it to Texas Liver Institute and excellent treatment! I would just be walking around thinking everything is peachy. So as they say, everything happens for a reason.

Best wishes and hugs right back to you, Kim!   Teri
64 yrs. on this fine planet!
diagnosed 1993
Stage 1 cirrhosis
Genotype 1a
12 wks. Harvoni  Relapse late Feb. 2015
Currently treating with Solvaldi/Olysio
The light at the end of the tunnel, is often not a train!

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Did not make it into drug trial!
« Reply #3 on: August 30, 2015, 03:54:26 pm »
"Quite treatable" is a wonderful thing to hear.  I don't think doctors say that lightly so whatever led you to this team really was a blessing in disguise!  Wishing you strength and healing.
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline terih

  • Member
  • Posts: 74
Re: Did not make it into drug trial!
« Reply #4 on: August 30, 2015, 04:03:15 pm »
Else, thank you so much for the good wishes! good wishes your way, as well!! Teri
64 yrs. on this fine planet!
diagnosed 1993
Stage 1 cirrhosis
Genotype 1a
12 wks. Harvoni  Relapse late Feb. 2015
Currently treating with Solvaldi/Olysio
The light at the end of the tunnel, is often not a train!

Offline Bituman

  • Member
  • Posts: 157
Re: Did not make it into drug trial!
« Reply #5 on: August 30, 2015, 05:08:11 pm »
Terih your positive spirit is infectous!  You will win these battles.  Lucky for you you're in Texas where there are top notch cancer treatment centers, including UTMB in Galveston, which by the way, helped me whip cancer in 1975. Liver cancer is no fun, but not a death sentence either.  It can be beat and you're just the one to prove that! 

All the best,

Bob
Age = 59, male, infected likely 1975
DX 07/07 GT 1a
Biopsy 2007:  GR 1, stage 0, HAI = 2/18
Since 2007:  1.48 MM < VL < 11 MM, avg = 5.64 MM
IL28B=CT
1/26/15, AST=43, ALT=55, VL=3.59 MM
2/5 Start Harvoni 12 weeks; Treat naive
2/20 AST=29, ALT=24, VL=59
3/6 AST=29, ALT=25, VL<15
3/19 AST=24, ALT=22, VL=undet
4/3 AST=29, ALT=25, VL=undet
4/30 EOT, AST=22, ALT=20, VL=undet
5/29 EOT+4, AST=20, ALT=19, VL=undet SVR
7/24 EOT+12, AST=23, ALT=18, VL=undet SVR
10/16 EOT+24, AST=22, ALT=17, VL=undet SVR

Offline Patience

  • Member
  • Posts: 40
Re: Did not make it into drug trial!
« Reply #6 on: August 31, 2015, 01:20:03 pm »
Teri, I'm so sorry about your latest news. What a spectacular bummer! But I'm so glad you found Dr. Fab to help you through this. I really agree that things happen for a reason and your own positive reasoning on your current situation certainly backs that up. I hope you can take some time to get away from troubles and paint. It provides great distraction from worries, and, who knows, you may have a masterpiece in there just waiting to escape! At any rate, I am wishing you success in finding solutions that will bring you healing and good health.

GT 1b
Dx2000
Tx2005 peg/rib. responder but had to stop at 20 weeks due to eye and thyroid problems. Relapse 3 months later
2013 fibrosis F2-1
TX 6/7/15 Harvoni 12 weeks VL 815,000, log 5.91,     ALT 47, AST 80
@3 weeks: VL detected <15, log <1.18
@ 9 weeks VL Undetected
EOT 8/29/15 no labs done
12/3/15  14 week post EOT: UNDETECTED!!
 ALT 11 AST 21
2/19/16  24 week post: UNDETECTED

Offline terih

  • Member
  • Posts: 74
Re: Did not make it into drug trial!
« Reply #7 on: August 31, 2015, 03:57:02 pm »
Bituman, how are you doing my fellow former Austinite? I hope you are gliding right along! Thank you so much for your kind words and moral support! It means a lot to me!

Patience, thank you also! Believe me, I'm taking lots of time for myself and being very kind to myself! You please do the same, ok?!!

I just got back from the transplant center and don't know one thing I didn't know before I went there! Nutrition classes consisted of...... don't eat salt! No foolin'??!!!  ;)

Here's one that will make y'all giggle, when I went to the information desk to find out where the transplant part was located, the lady looked at me seriously and asked, do you know someone that's getting or had a transplant! So apparently I'm still looking pretty danged healthy!

64 yrs. on this fine planet!
diagnosed 1993
Stage 1 cirrhosis
Genotype 1a
12 wks. Harvoni  Relapse late Feb. 2015
Currently treating with Solvaldi/Olysio
The light at the end of the tunnel, is often not a train!

 


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