Just reporting in....Tom started his treatment today. I just updated his medication list (which btw) is growing longer by the year. He is taking sovaldi 400 mg once a day along with ribavirin 200 mg 3 tablets two times a day. @ wlmj 1960 his oral chemo is nexavar 200 mg w tablets twice a day along with his other medications. Hopes to have little side effects but I will keep you posted. He has lost quite a bit a weight from the oral chemo and I hope he doesn't lose any more with the new treatment. I'll fill you in when he goes back for his check up with his gastro doc here. We go to Mt Sinai for his CT liver scan on Sept 11th and am sure they will be happy to hear he has started treatment. At times I wonder why they didn't wait to hhave him begin in October when the new treatment is expected to be approved and start him then (that is what I thought the original plan was). Either way, very excited he is trying again and will beat this time.....Glad to hear others are getting positive results. Printed out the responses about the 4 week check up..thanking you Tig and Isiscat for your input. He says he will see what the doctor says when he reaches that point. Just an FYI too. we live in New York in the US and got the news that his co pay will only be $29 a piece for both medications. He is going through silver script and the medication got delivered to the house. Keeping our fingers crossed!
tomyboy said
Aug 13, 2014
Thanks for all the great feedback. He recieved his medication in the mail and plans to start tomorrow. He is mentally prepared and hoping for positive results. I will keep you all posted......
Isiscat2011 said
Aug 9, 2014
I agree that there is no evidence the 4 week viral load result is indicative of outcome.
The claim that "the success rates for the Sovaldi backbone protocols is 95%+" is, however, very misleading. Individual factors such as genotype, liver status, prior tx history, length of tx, and what drugs are used with Sovaldi all factor into success rates. Additionally, clinical trial SVR rates are often not mirrored in real world SVR rates.
The 95%+ SVR rate definitely would not apply to a genotype 1, who has cirrhosis, on a 12 week Sovaldi/Riba combo. Sorry to have to correct the 95%+ misperception, but people need to understand the reality, in order to make informed decisions.
Tig said
Aug 9, 2014
wmlj1960 wrote:
I'm not sure why the 4 week test are so important to predicting the effectiveness that the treatment will have going forward. So I'll let one of the more knowledgeable guru's explain it and then we'll both know.
The importance of an inital 4 week viral load test is sadly lacking proof. There are few organizations that even provide an established viral load requirement (algorithm) to support treatment continuance. Physicians Plus Insurance requires an undetectable viral load at 4 weeks to continue, but the VA set their initial VL at 6 weeks if memory serves me, but allows for a repeat every two weeks following, still without a discontinuance guideline. It's very uncommon to see people fail to reach an undetectable VL while on Sovaldi treatment by week 12, but quite often we witness people fail to reach UND by week 4. I believe the absolute earliest VL should be at week 6, but even then I've seen detectable results returned. These early VL's (that return detectable) only serve to disappoint and discourage people, so their value is questionable in my opinion. Many physicians and insurance companies endorse an end of treatment and EOT +12 viral load test, some even waiting until EOT +12. If you choose to have a VL performed at week 4 or 6, don't be surprised if the results come back detected, it's not uncommon. The success rates for the Sovaldi backbone protocols is 95% +/-, those are excellent odds, far better than treatment has ever offered before. Finish the course of treatment and trust that this is Tom's turn to grab the golden ring! Good luck!
Tig
wmlj1960 said
Aug 9, 2014
Hi Laura, Has the pharmacy delivered Toms Rx's yet. Hopefully he is like me and may have some side effects at first but all of mine have gone away or are easily managed. I hope this will be true for him also. I'm sure he will consider this Rx combo a cake walk after all the harsh Rx combo's he has been on in the past. I'm interested in how he does taking Sov/Riba for HepC + oral chemo simultaneously, since liver cancer may be an obstacle in my future also, but I'll "cross that bridge when I get there".
I'm not sure why the 4 week test are so important to predicting the effectiveness that the treatment will have going forward. So I'll let one of the more knowledgeable guru's explain it and then we'll both know.
"Frustrated, moody and tired most days" is very understandable after all he's been through. Tell Tom I'm also praying the medicine "Kicks Butt"!!!
PS Yep, Mr love is very loved around here, and he knows it.
tomyboy said
Aug 9, 2014
Thanks for all the info. Best of luck on your treatment too. Please let us know how your results go. FYI- I didn't go to his last appointment with the gasto doctor but Tom is very intelligent when it comes to his medical history, and in particular with his hep c treatment. Many doctors have told him he should be a speaker at meetings and tell his story because he has bee through the ringer and truly is a wonderful man and I'm not just saying that. I really believe he missed his calling to become a doctor. I will print out these pages of messages to pass along to him and when he starts his treatment I believe he will be checked weekly. I am sure you are right about his situation. He is a unique character as he has cirrhosis, then had a liver resection due to the cancer, and has been on oral chemo for over a year August 5th. Tom did say that the doctor told him they would know within four weeks if it was going to work, not sure what he meant by that but was told they would do two tests to determine if he would continue on the medication. Maybe he misunderstood but we will cross that bridge when he gets there. We pray this kicks butt. I just want him to have a better quality of life. As you all know, he gets frustrated, moody and tired most days.
PS....I love Mr Love and what a unique name..........our cat is our child as we never had children so she is priceless to us as well.....
Isiscat2011 said
Aug 8, 2014
tomyboy wrote:
No I was wrong wmlj960. I misunderstood Tom. He is only taking sovaldi once a day and the ribo twice a day. The pharmacy still hasn't called to say it was in. By the way, what is your past history with treatment and have you had your four week check up. The doctor told him he would be on the treatment for twelve weeks, not 24. Do you think they may have to extend it?
Hi Laura:
24 weeks Sovaldi/Riba is recommended in the AASLD guidelines for all genotype 1s who can't use Interferon. You indicated that doc said he would know for sure in 4 weeks if the Sovaldi/Riba combo will "cure" Tom and this is unusual too. I'm sure doc has a plan but may not be communicating it well enough or there could be some misunderstanding going on. It is a lot of information to take in all at once. Also, Tom's situation is unique so doc may be taking things slowly to see how it goes. You will know more in time but don't be afraid to ask questions! :)
AASLD HCV Treatment Recommendations for treatment-naive patients who are NOT eligible to receive interferon
Recommended
Alternative
Genotype 1
Sovaldi + Olysio + ribavirin for 12 weeks**
Sovaldi + ribavirin for 24 weeks***
Genotype 2
Sovaldi + ribavirin for 12 weeks
none
Genotype 3
Sovaldi + ribavirin for 24 weeks
none
Genotype 4
Sovaldi + ribavirin for 24 weeks
none
Genotype 5 or 6
none
none
* For people with either HCV genotype 1b or HCV genotype 1a and in whom the Q80K polymorphism is not detected before treatment ** Physicians must prescribe this regimen off label because the combination of Solvaldi, Olysio and ribavirin has not been approved by the U.S. Food and Drug Administration (FDA). Research of this drug regimen among those with genotype 1 has been promising *** Preliminary data suggest this regimen may be less effective than the recommended regimen, particularly among those with cirrhosis
Cinnamon Girl said
Aug 8, 2014
Hello Laura, what wonderful news and no wonder you`re jumping up and down with excitement!
Tom has an excellent drug combo here and should find it so easy going compared to his previous treatments. Sounds like he`s really turned the corner now after everything he`s been through and you both have a lot to celebrate!
It would be great to hear from Tom in person and I`m sure he knows how welcome he would be here but in the meantime you`re doing a great job posting on his behalf, Laura, and keeping us updated. He is a very lucky man to have you by his side, and I`m sure he knows that!
Keep us updated...and best of luck to you both!
wmlj1960 said
Aug 8, 2014
I have no past history with Tx. I just waited longer than I should have to start = my fault.
This is day 17 on Tx for me so I've only had 2 wk labs, done 2 days ago 8-6-14. I'll have 4 week labs on 8-19-14 and see the doctor on 8-26-14 after the labs have had time to be completed etc.
I believe the reason my Tx is 24 weeks is due to my being decompensated cirrhotic with F-4 Fibrosis. As I understand it, the fibrosis, (scarring of the liver tissue), causes issues with the medicine accessing all the cells inside the liver, hence more Tx time is needed. I'm not sure what the SOP is for prescribing Sov/Riba in non cirrhotics / early cirrhotics. mallani or Isiscat etc. can answer that question better than I can.
My cat is Mr Love. I found him abandoned as a kitten in the parking lot of Love's Truck Stop in Memphis TN, hence the name. I would guess he's about 4 yo now. He's a mess, but a good mess!!! LOL
-- Edited by wmlj1960 on Friday 8th of August 2014 04:48:27 PM
tomyboy said
Aug 8, 2014
No I was wrong wmlj960. I misunderstood Tom. He is only taking sovaldi once a day and the ribo twice a day. The pharmacy still hasn't called to say it was in. By the way, what is your past history with treatment and have you had your four week check up. The doctor told him he would be on the treatment for twelve weeks, not 24. Do you think they may have to extend it?
Thank you all for the support. Tom can't wait to get and start his hopefully "final" treatment. Our cat's name is Carson...she is 14 and toothless now. She is awesome. Will have to post a picture of the two of us when he is successful.
wmlj1960 said
Aug 8, 2014
Great news. I'm also taking Sovaldi / Ribavirin so I'll be following Tom's progress.
That dosage is interesting. Different from mine and some others on Sov/Riba, which is 1 Sovaldi 400mg tablet + 600mg Ribavirin in the morning. Then 400mg Ribavirin at night.
Exciting news, Laura. I'm sure Tom is in good hands and I wish you both the best of luck. Should be a piece of cake compared to what he has endured so far. Let us know how things are going. :)
mallani said
Aug 7, 2014
Hi Laura,
Thanks for the update. I presume Tom will be doing 24 weeks of Sovaldi/ Ribavirin. He has a great chance of beating this and will probably not have any side effects, for a change. Keep us posted. Cheers.
Tig said
Aug 7, 2014
Hi Laura,
That truly is excellent news ! So happy you shared that with us. After all those attempts, he will probably not even realize he's on treatment again. The side effects are so much easier to tolerate and God knows he deserves an easy and successful go at it, finally!! Best of luck, I'm keeping my fingers crossed. It's a great time to treat, stay positive and keep us informed.
Tig
PS: Big congrats on the one year cancer free report, woot!!!!! That smile on your face is really shining!! You deserve it!
Matt Chris said
Aug 7, 2014
Hello Laura
That is great news hope all turns out well, Sovaldi is a very powerful HepC killer
matt
tomyboy said
Aug 7, 2014
Hi All, Just recieved awesome news and had to share. Tom just called me at work to report that his doctor just phoned to say he got the approval from insurance to start the new treatment. We are very excited. He will be taking the solvaldi twice a day along with the ribo 3 pills twice a day as a back up. I thought he would be getting the newer treatment due to be approved in October but doctors felt this was just as good and are getting great results. Again, Tom will be their first "local" patient who will be on oral chemo for liver cancer and this new treatment at the same time. Top liver transplant doc at Mt Sinai reports he will be fine doing both. We didn't think his insurance would pay for both. 45 pages of information sent = approval for treatment. They say there will be test after four weeks and they will "know" definitiely then, if it will cure him of hep c. This will be his fifth go around with treatment. First the 3 shots, then the peginterferon,then the pegasyist and then the triple therapy.....non were successful (and reminding, very stressful and painful for him with bad side effects)....I am elited, estatic and jumping in my seat right now. He is waiting by the phone for silver script to let him know when the script will be ready for him to pick up and begin. I promise to fill you in on his journey. I am even trying to get him to come on this web site forum himself, but he is not all that computer literate and not a great typer. I print your responses and information from time to time and he is very grateful. So happy I have all of you to share the news with and hope to be able to give others hope in knowing that my Tom has beaten this. I'll keep you posted....this comes after his anniversary of a year on oral chemo August 5th....and still cancer free. All the best, Laura
Hi all,
Just reporting in....Tom started his treatment today. I just updated his medication list (which btw) is growing longer by the year. He is taking sovaldi 400 mg once a day along with ribavirin 200 mg 3 tablets two times a day. @ wlmj 1960 his oral chemo is nexavar 200 mg w tablets twice a day along with his other medications. Hopes to have little side effects but I will keep you posted. He has lost quite a bit a weight from the oral chemo and I hope he doesn't lose any more with the new treatment. I'll fill you in when he goes back for his check up with his gastro doc here. We go to Mt Sinai for his CT liver scan on Sept 11th and am sure they will be happy to hear he has started treatment. At times I wonder why they didn't wait to hhave him begin in October when the new treatment is expected to be approved and start him then (that is what I thought the original plan was). Either way, very excited he is trying again and will beat this time.....Glad to hear others are getting positive results. Printed out the responses about the 4 week check up..thanking you Tig and Isiscat for your input. He says he will see what the doctor says when he reaches that point. Just an FYI too. we live in New York in the US and got the news that his co pay will only be $29 a piece for both medications. He is going through silver script and the medication got delivered to the house. Keeping our fingers crossed!
Thanks for all the great feedback. He recieved his medication in the mail and plans to start tomorrow. He is mentally prepared and hoping for positive results. I will keep you all posted......
I agree that there is no evidence the 4 week viral load result is indicative of outcome.
The claim that "the success rates for the Sovaldi backbone protocols is 95%+" is, however, very misleading. Individual factors such as genotype, liver status, prior tx history, length of tx, and what drugs are used with Sovaldi all factor into success rates. Additionally, clinical trial SVR rates are often not mirrored in real world SVR rates.
The 95%+ SVR rate definitely would not apply to a genotype 1, who has cirrhosis, on a 12 week Sovaldi/Riba combo. Sorry to have to correct the 95%+ misperception, but people need to understand the reality, in order to make informed decisions.
The importance of an inital 4 week viral load test is sadly lacking proof. There are few organizations that even provide an established viral load requirement (algorithm) to support treatment continuance. Physicians Plus Insurance requires an undetectable viral load at 4 weeks to continue, but the VA set their initial VL at 6 weeks if memory serves me, but allows for a repeat every two weeks following, still without a discontinuance guideline. It's very uncommon to see people fail to reach an undetectable VL while on Sovaldi treatment by week 12, but quite often we witness people fail to reach UND by week 4. I believe the absolute earliest VL should be at week 6, but even then I've seen detectable results returned. These early VL's (that return detectable) only serve to disappoint and discourage people, so their value is questionable in my opinion. Many physicians and insurance companies endorse an end of treatment and EOT +12 viral load test, some even waiting until EOT +12. If you choose to have a VL performed at week 4 or 6, don't be surprised if the results come back detected, it's not uncommon. The success rates for the Sovaldi backbone protocols is 95% +/-, those are excellent odds, far better than treatment has ever offered before. Finish the course of treatment and trust that this is Tom's turn to grab the golden ring! Good luck!
Tig
Hi Laura, Has the pharmacy delivered Toms Rx's yet. Hopefully he is like me and may have some side effects at first but all of mine have gone away or are easily managed. I hope this will be true for him also. I'm sure he will consider this Rx combo a cake walk after all the harsh Rx combo's he has been on in the past. I'm interested in how he does taking Sov/Riba for HepC + oral chemo simultaneously, since liver cancer may be an obstacle in my future also, but I'll "cross that bridge when I get there".
I'm not sure why the 4 week test are so important to predicting the effectiveness that the treatment will have going forward. So I'll let one of the more knowledgeable guru's explain it and then we'll both know.
"Frustrated, moody and tired most days" is very understandable after all he's been through. Tell Tom I'm also praying the medicine "Kicks Butt"!!!
PS Yep, Mr love is very loved around here, and he knows it.
Thanks for all the info. Best of luck on your treatment too. Please let us know how your results go. FYI- I didn't go to his last appointment with the gasto doctor but Tom is very intelligent when it comes to his medical history, and in particular with his hep c treatment. Many doctors have told him he should be a speaker at meetings and tell his story because he has bee through the ringer and truly is a wonderful man and I'm not just saying that. I really believe he missed his calling to become a doctor. I will print out these pages of messages to pass along to him and when he starts his treatment I believe he will be checked weekly. I am sure you are right about his situation. He is a unique character as he has cirrhosis, then had a liver resection due to the cancer, and has been on oral chemo for over a year August 5th. Tom did say that the doctor told him they would know within four weeks if it was going to work, not sure what he meant by that but was told they would do two tests to determine if he would continue on the medication. Maybe he misunderstood but we will cross that bridge when he gets there. We pray this kicks butt. I just want him to have a better quality of life. As you all know, he gets frustrated, moody and tired most days.
PS....I love Mr Love and what a unique name..........our cat is our child as we never had children so she is priceless to us as well.....
Hi Laura:
24 weeks Sovaldi/Riba is recommended in the AASLD guidelines for all genotype 1s who can't use Interferon. You indicated that doc said he would know for sure in 4 weeks if the Sovaldi/Riba combo will "cure" Tom and this is unusual too. I'm sure doc has a plan but may not be communicating it well enough or there could be some misunderstanding going on. It is a lot of information to take in all at once. Also, Tom's situation is unique so doc may be taking things slowly to see how it goes. You will know more in time but don't be afraid to ask questions! :)
for treatment-naive patients who are NOT eligible to receive interferon
* For people with either HCV genotype 1b or HCV genotype 1a and in whom the Q80K polymorphism is not detected before treatment
** Physicians must prescribe this regimen off label because the combination of Solvaldi, Olysio and ribavirin has not been approved by the U.S. Food and Drug Administration (FDA). Research of this drug regimen among those with genotype 1 has been promising
*** Preliminary data suggest this regimen may be less effective than the recommended regimen, particularly among those with cirrhosis
Hello Laura, what wonderful news and no wonder you`re jumping up and down with excitement!
Tom has an excellent drug combo here and should find it so easy going compared to his previous treatments. Sounds like he`s really turned the corner now after everything he`s been through and you both have a lot to celebrate!
It would be great to hear from Tom in person and I`m sure he knows how welcome he would be here but in the meantime you`re doing a great job posting on his behalf, Laura, and keeping us updated. He is a very lucky man to have you by his side, and I`m sure he knows that!
Keep us updated...and best of luck to you both!
I have no past history with Tx. I just waited longer than I should have to start = my fault.
This is day 17 on Tx for me so I've only had 2 wk labs, done 2 days ago 8-6-14. I'll have 4 week labs on 8-19-14 and see the doctor on 8-26-14 after the labs have had time to be completed etc.
I believe the reason my Tx is 24 weeks is due to my being decompensated cirrhotic with F-4 Fibrosis. As I understand it, the fibrosis, (scarring of the liver tissue), causes issues with the medicine accessing all the cells inside the liver, hence more Tx time is needed. I'm not sure what the SOP is for prescribing Sov/Riba in non cirrhotics / early cirrhotics. mallani or Isiscat etc. can answer that question better than I can.
My cat is Mr Love. I found him abandoned as a kitten in the parking lot of Love's Truck Stop in Memphis TN, hence the name. I would guess he's about 4 yo now. He's a mess, but a good mess!!! LOL
-- Edited by wmlj1960 on Friday 8th of August 2014 04:48:27 PM
No I was wrong wmlj960. I misunderstood Tom. He is only taking sovaldi once a day and the ribo twice a day. The pharmacy still hasn't called to say it was in. By the way, what is your past history with treatment and have you had your four week check up. The doctor told him he would be on the treatment for twelve weeks, not 24. Do you think they may have to extend it?
Thank you all for the support. Tom can't wait to get and start his hopefully "final" treatment. Our cat's name is Carson...she is 14 and toothless now. She is awesome. Will have to post a picture of the two of us when he is successful.
Great news. I'm also taking Sovaldi / Ribavirin so I'll be following Tom's progress.
That dosage is interesting. Different from mine and some others on Sov/Riba, which is 1 Sovaldi 400mg tablet + 600mg Ribavirin in the morning. Then 400mg Ribavirin at night.
Like your cat!
Exciting news, Laura. I'm sure Tom is in good hands and I wish you both the best of luck. Should be a piece of cake compared to what he has endured so far. Let us know how things are going. :)
Hi Laura,
Thanks for the update. I presume Tom will be doing 24 weeks of Sovaldi/ Ribavirin. He has a great chance of beating this and will probably not have any side effects, for a change. Keep us posted. Cheers.
Hi Laura,
That truly is excellent news ! So happy you shared that with us. After all those attempts, he will probably not even realize he's on treatment again. The side effects are so much easier to tolerate and God knows he deserves an easy and successful go at it, finally!! Best of luck, I'm keeping my fingers crossed. It's a great time to treat, stay positive and keep us informed.
Tig
PS: Big congrats on the one year cancer free report, woot!!!!! That smile on your face is really shining!! You deserve it!
Hello Laura
That is great news hope all turns out well, Sovaldi is a very powerful HepC killer
matt
Hi All, Just recieved awesome news and had to share. Tom just called me at work to report that his doctor just phoned to say he got the approval from insurance to start the new treatment. We are very excited. He will be taking the solvaldi twice a day along with the ribo 3 pills twice a day as a back up. I thought he would be getting the newer treatment due to be approved in October but doctors felt this was just as good and are getting great results. Again, Tom will be their first "local" patient who will be on oral chemo for liver cancer and this new treatment at the same time. Top liver transplant doc at Mt Sinai reports he will be fine doing both. We didn't think his insurance would pay for both. 45 pages of information sent = approval for treatment. They say there will be test after four weeks and they will "know" definitiely then, if it will cure him of hep c. This will be his fifth go around with treatment. First the 3 shots, then the peginterferon,then the pegasyist and then the triple therapy.....non were successful (and reminding, very stressful and painful for him with bad side effects)....I am elited, estatic and jumping in my seat right now. He is waiting by the phone for silver script to let him know when the script will be ready for him to pick up and begin. I promise to fill you in on his journey. I am even trying to get him to come on this web site forum himself, but he is not all that computer literate and not a great typer. I print your responses and information from time to time and he is very grateful. So happy I have all of you to share the news with and hope to be able to give others hope in knowing that my Tom has beaten this. I'll keep you posted....this comes after his anniversary of a year on oral chemo August 5th....and still cancer free. All the best, Laura