Aa
VIC report card @w8
so here's the good, bad and ugly after 8w of triple with VIC. My tx is a bit weird insofar as I added the VIC at w30 and am planning on only 18w but the sx may reflect what others will run into. The late start means my blood cell production had already been hammered by 7mo of soc so the extra drops are primarily due to the VIC. It also means there's no VL data since I was UND about w8, 22w before starting the PI.
The best part is there's no ugly part. Everything is tolerable though no fun.
The bad: HGB dropped 0.7 from 11.7 to 11.0 during 1st 4w and another 0.6 to 10.4 in the next 4. Nice predictable slope. I'm hoping to avoid epo, but might be in epo range by next month. Decreased my rbv from 1400 to 1200 when I started the VIC (still at protocol dosage). Platelets are getting hit hardest, now at 41 from a baseline of 200 and, worryingly, the rate of decrease doubled , dropping 20 in 1st 4w and another 40 in 2nd 4w. ANC at 0.6 (from 1.7 pre VIC) and WBC at 1.4 which triggered a double L indication and a reread.
The anemia is definitely the major issue. I'm wondering whether it's possible to keep working with HgB under 10. Other annoyances : post ifn shot recovery is slower; everything tastes like cr*p, persistent but mild 'gastric distress' which motivates me to stay near a bathroom, particularly in the 1st part of the day, headaches that weren't there with soc.
The good: no rashes beyond what soc had already triggered, no hemorrhoids/itching, no nausea, no mood disorders beyond those present from soc. The gastric distress is much milder than what Alinia brought on after 8w.
I'm hoping the bone marrow blood cell suppression levels out and I can finish the remaining 10w of triple, but by next month levels could be getting borderline.
Overall verdict: it's good a good beat, easy to dance to.
The best part is there's no ugly part. Everything is tolerable though no fun.
The bad: HGB dropped 0.7 from 11.7 to 11.0 during 1st 4w and another 0.6 to 10.4 in the next 4. Nice predictable slope. I'm hoping to avoid epo, but might be in epo range by next month. Decreased my rbv from 1400 to 1200 when I started the VIC (still at protocol dosage). Platelets are getting hit hardest, now at 41 from a baseline of 200 and, worryingly, the rate of decrease doubled , dropping 20 in 1st 4w and another 40 in 2nd 4w. ANC at 0.6 (from 1.7 pre VIC) and WBC at 1.4 which triggered a double L indication and a reread.
The anemia is definitely the major issue. I'm wondering whether it's possible to keep working with HgB under 10. Other annoyances : post ifn shot recovery is slower; everything tastes like cr*p, persistent but mild 'gastric distress' which motivates me to stay near a bathroom, particularly in the 1st part of the day, headaches that weren't there with soc.
The good: no rashes beyond what soc had already triggered, no hemorrhoids/itching, no nausea, no mood disorders beyond those present from soc. The gastric distress is much milder than what Alinia brought on after 8w.
I'm hoping the bone marrow blood cell suppression levels out and I can finish the remaining 10w of triple, but by next month levels could be getting borderline.
Overall verdict: it's good a good beat, easy to dance to.
Thank you so much for sharing your experience. Your sense of humor is still good. I can relate to being so weak you can barely get in the car much less grapple for the seat belt.
I am sending good thoughts your way, please keep sharing
D
I am sending good thoughts your way, please keep sharing
D
Interesting reading, thanks for posting. So glad to hear the vic has been as tolerable as your course of SOC so far. We're rooting for you.
Glad to hear you are hanging in there. I couldn't function when my Hgb dropped below 11 and since I could not take epo in the trial, Dr D suggested that I could decrease Riba without risk since I was at week 35 and fully saturated. I did reduce and felt better and attained an SVR.
Best of luck to you. It sounds like you will join the SVR crowd!
Best of luck to you. It sounds like you will join the SVR crowd!
Thanks for sharing, it does help when people post what they are going through. Love the sense of humor from everyone the blue haired set got me, I could actually invision that one.
Truly hoping better for you.
Truly hoping better for you.
it definitely takes a village to get through tx - many thanks for the support! I learned the basic mantra of tx from mikesimon when I first found this forum
"just keep putting one foot in front of the other".
However, it's now 8 years later and short term memory is not what it was, so I want to propose an additional footnote to the mantra :
"and remember which foot you moved - or you're going around in circles"
Trish: quite right about the epo delay but there's a certain degree of curiosity here: I want to see if the estimate of a 1-2 unit Hgb drop from the PI in addition to the soc-triggered decline holds up (and also some pig-headed stubbornness, since that's what I told my Dr. I was expecting)
Frijole: needle core is definitely a piece of cake relative to laparoscopic: no general to recover from, no holes. Good luck with the report - let us know, Now that you're an old hand at reading bx reports maybe you can ask the pathologist for pics. I've always thought the report should be accompanied by annotated images : this is where I see infiltrate, periportal fibrosis, bridging, etc. I haven't looked at the Gilead trials but it definitely sounds worth investigating. The newer drugs in many cases offer a big improvement. Though boce/tela deliver great odds for relapsers, the tx wear'n'tear has not improved.
"just keep putting one foot in front of the other".
However, it's now 8 years later and short term memory is not what it was, so I want to propose an additional footnote to the mantra :
"and remember which foot you moved - or you're going around in circles"
Trish: quite right about the epo delay but there's a certain degree of curiosity here: I want to see if the estimate of a 1-2 unit Hgb drop from the PI in addition to the soc-triggered decline holds up (and also some pig-headed stubbornness, since that's what I told my Dr. I was expecting)
Frijole: needle core is definitely a piece of cake relative to laparoscopic: no general to recover from, no holes. Good luck with the report - let us know, Now that you're an old hand at reading bx reports maybe you can ask the pathologist for pics. I've always thought the report should be accompanied by annotated images : this is where I see infiltrate, periportal fibrosis, bridging, etc. I haven't looked at the Gilead trials but it definitely sounds worth investigating. The newer drugs in many cases offer a big improvement. Though boce/tela deliver great odds for relapsers, the tx wear'n'tear has not improved.
Thanks so much for the update- was wondering how you are doing. Sending you positive platelet energy and hoping the dragon has been nuked into oblivion.
Blessings
Eric
Blessings
Eric
Willing - thanks for asking - news on the biopsy front. -- Had it last Friday. Piece of cake. If I had known what a breeze these needle core biopsies were I would have never had those two laproscopic! I don't have any results. I thought I might call the local GI today or tomorrow and see if he has results. I guess what they do is send the samples to the local pathologist and he prepares the slides and reads them, but then they are supposed to get sent to the pathologist at the Liver Institute in Dallas to be read. My appointment there is August 5.
A little interesting side note - the day after the biopsy I was sitting in my car (not driving) when I got a call from the PA for the hepatologist I consulted with previously who had left the LIver Institute. She was calling to see if I was interested in the Gilead trials (4 drugs, no placebo) which will start this fall. I was really caught off guard, but told her I had just had a biopsy and would probably get back with her to find out more details. I am clueless on these trials and would like to know more.
Shame on you --- not wearing your seatbelt! That is so funny - caught twice by the same cop. Driving and tx do not go well together anyway! Love your recap.
frijole
A little interesting side note - the day after the biopsy I was sitting in my car (not driving) when I got a call from the PA for the hepatologist I consulted with previously who had left the LIver Institute. She was calling to see if I was interested in the Gilead trials (4 drugs, no placebo) which will start this fall. I was really caught off guard, but told her I had just had a biopsy and would probably get back with her to find out more details. I am clueless on these trials and would like to know more.
Shame on you --- not wearing your seatbelt! That is so funny - caught twice by the same cop. Driving and tx do not go well together anyway! Love your recap.
frijole
"The best part is there's no ugly part. everything is tolerable though no fun"
I dunno...you seem to have maintained your sense of humour well enough. Your seatbelt story was amusing, could see that scene playing out in my head. :) Good to know there is no ugly part. You seem hesitant on the procrit and you only have so much to go but the procrit does take a bit to kick in as you know so you have to consider it a bit before you're ready to call "uncle", yes? Simply a matter of balancing how hard you're willing and able to be hit with the fatigue, etc. All in all...high hopes for you and good to hear that the introduction of the Vic has not added too much additional stress in the way of side effects. Well done.
Trish
I dunno...you seem to have maintained your sense of humour well enough. Your seatbelt story was amusing, could see that scene playing out in my head. :) Good to know there is no ugly part. You seem hesitant on the procrit and you only have so much to go but the procrit does take a bit to kick in as you know so you have to consider it a bit before you're ready to call "uncle", yes? Simply a matter of balancing how hard you're willing and able to be hit with the fatigue, etc. All in all...high hopes for you and good to hear that the introduction of the Vic has not added too much additional stress in the way of side effects. Well done.
Trish
Well your bloods may be dropping but same can't be said for your brain. Great info and details you have given us, thanks.
What I want to know is, why haven't you descended into brain fog and confusion like the rest of us when on the home stretch to the finish line?
Terrific,
dointime
What I want to know is, why haven't you descended into brain fog and confusion like the rest of us when on the home stretch to the finish line?
Terrific,
dointime
"Overall verdict: it's good a good beat, easy to dance to"
Keep up the good work W.
b
Keep up the good work W.
b
I have nothing to support my opinion but I'll give it to you anyway.
Your platelets will stabilize.
But, really willing - that has been one huge drop!
Good luck my friend.
Mike
Your platelets will stabilize.
But, really willing - that has been one huge drop!
Good luck my friend.
Mike
cando : under the circumstances, the last thing I would do is mess with one of those cane-wielding blue hairs! Yesterday I got (another) ticket for not wearing my seat belt. The cop was nice enough, but he had stopped me for the same thing last week and let me go with a warning, so I was running out of creative talking points. Still, he was trying. Asked if there was any medical reason I couldn't wear a seat belt. I started to explain that you first had to FIND it (pause, rest), then you had to PULLLLLL it way to one side (pause, rest), then you had to JAM it in the latch until the darn thing clicked (long pause, rest). He started to look at me funny and ask about medications and I thought it best to shut up.
cheesenrice: breakthrough is nasty, sorry about that. However, on the spectrum of ifn response it seems to put you above a partial responder but below a relapser, so triple may do the job. Good luck!
lynda607: thanks! There is also more detail in in tables 32 and 33 of the Merck submission at pages 81 and 82:
http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/AntiviralDrugsAdvisoryCommittee/UCM252343.pdf
All blood cell production is affected to some extent, but impact on platelets seems limited to a tiny percentage (3% vs 1% in control) of pts. Relative to RBCs, and even Neuts, this seems a weird sx for VIC.
cheesenrice: breakthrough is nasty, sorry about that. However, on the spectrum of ifn response it seems to put you above a partial responder but below a relapser, so triple may do the job. Good luck!
lynda607: thanks! There is also more detail in in tables 32 and 33 of the Merck submission at pages 81 and 82:
http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/AntiviralDrugsAdvisoryCommittee/UCM252343.pdf
All blood cell production is affected to some extent, but impact on platelets seems limited to a tiny percentage (3% vs 1% in control) of pts. Relative to RBCs, and even Neuts, this seems a weird sx for VIC.
There is a reference to platelets and Victrelis which my be why you're seeing the drop.
page 9
http://www.merck.com/product/usa/pi_circulars/v/victrelis/victrelis_pi.pdf
Neutrophils and Platelets
The proportion of subjects with decreased neutrophil and platelet counts was higher in the VICTRELIS-containing arms compared to subjects receiving PegIntron/REBETOL alone. Three percent of subjects receiving the combination of VICTRELIS with PegIntron/REBETOL had platelet counts of less than 50 x 109/L compared to 1% of subjects receiving PegIntron/REBETOL alone. Decreases in neutrophils or platelets may require a decrease in dosage or interruption of peginterferon alfa, or
discontinuation of therapy [see Package Inserts for peginterferon alfa and ribavirin].
page 9
http://www.merck.com/product/usa/pi_circulars/v/victrelis/victrelis_pi.pdf
Neutrophils and Platelets
The proportion of subjects with decreased neutrophil and platelet counts was higher in the VICTRELIS-containing arms compared to subjects receiving PegIntron/REBETOL alone. Three percent of subjects receiving the combination of VICTRELIS with PegIntron/REBETOL had platelet counts of less than 50 x 109/L compared to 1% of subjects receiving PegIntron/REBETOL alone. Decreases in neutrophils or platelets may require a decrease in dosage or interruption of peginterferon alfa, or
discontinuation of therapy [see Package Inserts for peginterferon alfa and ribavirin].
Thanks for sharing your experience with VIC. I hope the rest of your treatment goes smoothly.
christina
christina
many thanks for the good wishes! It's good to hear about the platelets leveling, From inspection of the soc vs soc+vic blood cell graphs in the Merck submission I'm hoping things will level out over the next month. Why platelets are taking the brunt of it is not clear. Bali pointed out rbv can act as as a platelet stimulant so part of the reason for the increased drop could be the rbv reduction from 1400 to 1200.
The situation with my Dr. is a bit complicated. He of course prefers sticking to the tried and true and is doubtful about the partial evidence supporting my current tx (eg Alinia, or adding a PI to reduce relapse risk). On the other hand, the "tried and true" failed on the last round, so he's been OK with experimenting this time. I pushed for the VIC arguing that the more bearable sx would pose a smaller risk to finishing and that given the pre-PI levels I'd probably be OK without rescue drugs. We'll see in a month, I may have to call 'uncle' and do the procrit after all
frijole : yes, I work from home, which is a big help with the current logistics ( do some work along with the 2-3am pills? no problem). I haven't seen any reference to VIC impact on platelets so I don't think this is typical. Last round I had no problems with them. How's the news on the bx front?
The situation with my Dr. is a bit complicated. He of course prefers sticking to the tried and true and is doubtful about the partial evidence supporting my current tx (eg Alinia, or adding a PI to reduce relapse risk). On the other hand, the "tried and true" failed on the last round, so he's been OK with experimenting this time. I pushed for the VIC arguing that the more bearable sx would pose a smaller risk to finishing and that given the pre-PI levels I'd probably be OK without rescue drugs. We'll see in a month, I may have to call 'uncle' and do the procrit after all
frijole : yes, I work from home, which is a big help with the current logistics ( do some work along with the 2-3am pills? no problem). I haven't seen any reference to VIC impact on platelets so I don't think this is typical. Last round I had no problems with them. How's the news on the bx front?
willing
Overall, this sounds great. Your HGB has not dropped significantly but listen to can do -- Why not get started on epo. I really didn't have noticable side effects from it and -hey- what's one more shot. I think you rellay should be concerned about whether you can work if your HGB drops below 10. I started procrit when my HGB dropped below 11 -- I specifically begged for it so I could continue to work. You do work at home, right? -- still, it would be very difficult to concentrate and get much done in the 9's.. I like can-do's flash back on the blue hairs!
You have been clear since week 8? No hydroplaning this time, eh? I suspect that is due to the amount of riba you have taken. I do hate to see that the platelets have gone down so much. In fact, I can't believe they have dropped from 200 to 41. Is that a normal side effect of the VIC? Were they dropping significantly on the two meds? I checked back on my records, and starting platelets were 273 and the lowest they dropped were 171. (they were 238 lst week). What about neupogen. With ANC at .6 they must be trying to push that on you too. I think I begged off until I was at .4 but I do understand the double L. Labcorp was constantly holding up my labs for the second review before they would give them to my doc. That's why I liked getting labs done at the Oncology Dept. - they were used to those readings.
Willing, you have it made now, I think. Even if you had to quit early, I think you would be there. I am very glad you posted this update.
frijole
Overall, this sounds great. Your HGB has not dropped significantly but listen to can do -- Why not get started on epo. I really didn't have noticable side effects from it and -hey- what's one more shot. I think you rellay should be concerned about whether you can work if your HGB drops below 10. I started procrit when my HGB dropped below 11 -- I specifically begged for it so I could continue to work. You do work at home, right? -- still, it would be very difficult to concentrate and get much done in the 9's.. I like can-do's flash back on the blue hairs!
You have been clear since week 8? No hydroplaning this time, eh? I suspect that is due to the amount of riba you have taken. I do hate to see that the platelets have gone down so much. In fact, I can't believe they have dropped from 200 to 41. Is that a normal side effect of the VIC? Were they dropping significantly on the two meds? I checked back on my records, and starting platelets were 273 and the lowest they dropped were 171. (they were 238 lst week). What about neupogen. With ANC at .6 they must be trying to push that on you too. I think I begged off until I was at .4 but I do understand the double L. Labcorp was constantly holding up my labs for the second review before they would give them to my doc. That's why I liked getting labs done at the Oncology Dept. - they were used to those readings.
Willing, you have it made now, I think. Even if you had to quit early, I think you would be there. I am very glad you posted this update.
frijole
Great information. Good to have a glimpse that differentiates the soc from the Vic. Hopefully you won't see more decline in your blood levels.
Here's to your success and SVR,
Dave
Here's to your success and SVR,
Dave
Thx for posting willing... hope your labs stabilize and good luck down the strech...
Will
Will
Why not look into procrit now? Kwo started using it once the HGB dropped below 11 when on VIC. The good thing for you is your not having that really fast drop on it. With me i found my body did some what keep adusting to the lower HGB.
Though i can still remember those blue hairs on their walkers and canes speeding past me in the hospital, the thoughts of car jacking an electric wheelchair or stealing someones oxygen tank are now my new flash backs.
Hope your platelets will become stable and start bouncing up some. Hang in there guy, looks like your going to make though you might be crawling across the finish line.
cando
.
Though i can still remember those blue hairs on their walkers and canes speeding past me in the hospital, the thoughts of car jacking an electric wheelchair or stealing someones oxygen tank are now my new flash backs.
Hope your platelets will become stable and start bouncing up some. Hang in there guy, looks like your going to make though you might be crawling across the finish line.
cando
.
That is good to hear as I will be starting with victrelis here very soon. I just did my fourth injection and have a check up tomorrow. I'll be praying for you that everything stabelizes for you and goes well. Good luck!
hoping downward trends turn around for you or at least stabilize - they sometimes do - my platelets stabilized around 40 for a few weeks then slowly went back up for a few more but i experienced breakthrough and stopped tx
Thanks for the detailed info and update on your journey. I wish you all the best as you tackle these next weeks and I will pray that your levels stay where you can finish the triple tx.
So glad you could eliminate any ugly's going on, and that the beat is good. Feel the music!
So glad you could eliminate any ugly's going on, and that the beat is good. Feel the music!
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