Wow...it's been a long time.
Steve is still on triple therapy. On March 13th, he had his last RNA level taken. The result was <615 IU/mL. He didn't get an actual count like we were used to. Then we realized that the lab messed up and did a bDNA test instead of the usual Quantitative Real Time PCR. With the Quantitative Real Time PCR test, you find out your actual count. Not so for the bDNA test. If your numbers are less than 615 IU/mL, your result says <615. That is what the test considers clear. So as far as the doctor was concerned, Steve is currently undetectable.
Had some problems getting the Alinia. Humana did not want to approve more than a 20 day supply per month. So our doctor called Humana and sent them a copy of the study that can be found on Romark's site: "Study Showing Improved Virological Response in Chronic Hepatitis C Genotype 4 Patients Given Nitazoxanide, Peginterferon and Ribavirin." After reading the study, Humana approved the full 30 day supply.
We also got the results of the Disability Hearing- Denied. To paraphrase, the judge's statement said that although there is evidence that Steve is currently disabled, there was not enough documentation of Steve's depression by the doctor's prior to the date last insured. Therefore, his illness does not meet Social Security's definition of disabled. After seeing the records, we decided not to appeal. The doctor's truly didn't document the file properly-just mentioned the Hep- even though Steve did discuss the depression with them several times. And since we waited such a long time to file, there was no way to document today what happened six years ago. At least, Steve doesn't have it hanging over his head any longer.
Well, that pretty much sums up the last 3 months. Even though he still feels pretty lousy most of the time, Steve feels a lot better than he did without the Procrit. As far as we are concerned, so far-so good. Only 22 more weeks to go!!!
Showing posts with label Genotype 4. Show all posts
Showing posts with label Genotype 4. Show all posts
Monday, May 17, 2010
Sunday, February 28, 2010
Week 15 Update-A Visit to the Gastroenterologist
We went to the gastroenterologist, and he had a much more positive reaction to the RNA level than we did. He believes that the viral load is probably on its way down- not up. The doctor said that it doesn't make sense to him that the treatment wouldn't be working now since it worked before. So he kept Steve on the triple therapy and ordered a new blood test including viral load for week 16.
As far as Steve's hemoglobin count (10.2 at week 12), the doctor suspects Steve is probably anemic again (even though he is taking Procrit). So he decided to lower Steve's ribavirin from 1200mg a day to 1000mg a day. The doctor believes that the treatment will still be effective because when Steve originally started the therapy he weighed 25 more pounds than he does now. Therefore, 1000mg is appropriate for his current weight.
On a different note, I have to give credit to the gastroenterologist. He always takes his time with us and never minds that I come in with a dozen questions and notes from information that I have gotten off of the internet (mainly from Janis and Friends). He appreciates the fact that I do the research and doesn't feel that I am trying to second guess him. In addition, when I told the doctor that Steve was having a hard time getting his test results, he told me to email him if we need anything in the future, and he'll make sure that Steve gets it.
As far as Steve's hemoglobin count (10.2 at week 12), the doctor suspects Steve is probably anemic again (even though he is taking Procrit). So he decided to lower Steve's ribavirin from 1200mg a day to 1000mg a day. The doctor believes that the treatment will still be effective because when Steve originally started the therapy he weighed 25 more pounds than he does now. Therefore, 1000mg is appropriate for his current weight.
On a different note, I have to give credit to the gastroenterologist. He always takes his time with us and never minds that I come in with a dozen questions and notes from information that I have gotten off of the internet (mainly from Janis and Friends). He appreciates the fact that I do the research and doesn't feel that I am trying to second guess him. In addition, when I told the doctor that Steve was having a hard time getting his test results, he told me to email him if we need anything in the future, and he'll make sure that Steve gets it.
Sunday, February 21, 2010
The Peaks & Valleys of the Hep C Treatments
Déjà vu! As many of you know, this is the second time Steve had responded to the treatment for Hep C. The first time was combo therapy- Pegasys and Copegus. At the six month mark, his viral load was 20. So the doctor said that the virus was considered to be cleared. However, by the end of the 48 weeks, it was back. Steve’s also tried another form of treatment. He was on Infergen for 2 weeks, and I thought it was going to kill him. So did Steve, therefore the doctor took him off of it. So, when the triple therapy (Pegasys, Ribavirin & Alinia) was able to completely clear the virus (undetectable), it was a true miracle to me. Once I saw it was back, I just couldn’t believe it. Why…why does it keep coming back?
The only way I can describe the peaks and valleys of the experiences is to compare them to being knocked down by a wave. You are in the water. The sun is shining down upon you. You are feeling great. It’s a beautiful day. Unsuspectingly, you turn around. There is a huge wave coming right at you. Before you know it, you are under water trying to stand up. You can’t. You can feel the sand pulling from beneath your feet. You wonder if you are going to make it. Will you be able to maintain your breath until you can get out from under the wave? You do. As quickly as the wave came, it disappeared. You are back on your feet. You breathe a huge sigh of relief and thank God. Suddenly another wave comes and knocks you back down.
Initially, that’s the way it feels. But on that note, they say when you are knocked down by a wave you shouldn’t try to fight it. You should remain calm. Conserve your energy and let it pass.
This too shall pass.
The only way I can describe the peaks and valleys of the experiences is to compare them to being knocked down by a wave. You are in the water. The sun is shining down upon you. You are feeling great. It’s a beautiful day. Unsuspectingly, you turn around. There is a huge wave coming right at you. Before you know it, you are under water trying to stand up. You can’t. You can feel the sand pulling from beneath your feet. You wonder if you are going to make it. Will you be able to maintain your breath until you can get out from under the wave? You do. As quickly as the wave came, it disappeared. You are back on your feet. You breathe a huge sigh of relief and thank God. Suddenly another wave comes and knocks you back down.
Initially, that’s the way it feels. But on that note, they say when you are knocked down by a wave you shouldn’t try to fight it. You should remain calm. Conserve your energy and let it pass.
This too shall pass.
Tuesday, February 16, 2010
A Punch in the Stomach
We never received the complete results of Steve's week 8 blood test. Apparently, the RNA level was never taken. So when the doctor ordered the week 12 blood test, he included another request for the RNA level. By this time, we were both anxious to see the results. So once they were in, rather than play telephone tag with the gastro's office staff, we decided to drive over and pick up the results.
What we received was news that we weren't expecting. So I asked my husband to jot down a few words for the blog describing how he felt about the results. I literally thought he would just write a few words. He wrote almost 2 pages. So rather than hear it from me, these are Steve's own words.
What we received was news that we weren't expecting. So I asked my husband to jot down a few words for the blog describing how he felt about the results. I literally thought he would just write a few words. He wrote almost 2 pages. So rather than hear it from me, these are Steve's own words.
A Punch in the Stomach-Round 2 of Triple Therapy
On February 15th, we got the results of my week 12 blood test. It was a full test with the RNA level. I was very anxious to get the results because for the past few weeks now I have been feeling worse. I've been getting short of breath again and feeling so tired that I can hardly stand sometimes. The nausea is also getting a lot worse, and it's very hard to concentrate.
This is actually my second time getting the week 12 test results. The 1st time was October 13, 2009 during my first round of triple therapy. I was pretty sick then too. So I was also anxious to get those results. As it turned out, the good news was...I cleared the virus. My viral load was normal with a big 0. My AST & ALT were also normal. Talk about a happy day!!
The bad news was that I was extremely anemic, and since I was having chest pains and shortness of breath, my doctor took me off the treatment. Then he ordered me start taking procrit and see a cardiologist for a stress test and echo of my heart. No more treatment until he got the results. By the time I had the tests, 4 to 5 weeks had gone by. The results were good though and the doctor gave me the ok to go back on tx.
The only thing was I had to start over from week one again. This time the first ten weeks weren't so bad. Then I started get the same symptoms back: shortness of breath, chest pains, itching. So that's why I was anxiously waiting for the 2nd round of week 12 results. I thought I might be anemic again. I wasn't concerned about my RNA level. I was just assuming I was still clear.
So when we picked up the results, I didn't open the envelope until we got into the car. I looked at my platelets which were very low (81), and my AST was a little high, but the real kicker was my viral load was 280. 280...I know that's not high. But it's back. It's back! It was like getting punched in the stomach. I tried to hide it but it really bothered me. I kept thinking to myself ..."What's happening?!" I feel worse for my wife. The next day when my wife went to work it really hit me. It really hurt.
Labels:
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Sunday, January 24, 2010
The Stress is Building
With the finances being the way they are, I have been a bit stressed out. I try not to show it, because I know that Steve feels guilty about not being able to help out. Unfortunately, the other day, I blew it.
Here's what happened. Last week my supervisor told me that I was eligible to work overtime. The additional money could really help us out, so I was ecstatic. The only problem was telling Steve. In my mind, I was anticipating that he would be resistant to the idea.
You see, when Steve became ill and unable to work, I literally became the center of his universe. (And I totally get it, if I spent 5 days a week all by myself, I am sure I would feel the same way.) When I am not at work, we do almost everything together. And when I am at work, he looks forward to me coming home. Other than watching the news on TV, I am his lifeline to the outside world. I always try to be there for him. It's something that he has gotten used to and has come to expect. So sometimes, when I do have something to do that doesn't involve him, he's resistant. He won't tell me not to. He'll just come up with reasons why it may not be a good idea.
Well, we were sitting around watching tv, and I figured that was as good a time as any to mention it. And I told him that I was allowed to work overtime and that I would like to do so. Then I asked him what he thought of it. And he told me that he didn't think it was a good idea. He said he was afraid that I would get burnt out. And I snapped, and regrettably I said, "You don't think drowning in bills is going to burn me out!" The minute I said it I wished I could take it back. Steve's face fell, and we were both miserable.
We sat there for a while in silence. I apologized. Then we talked about it and agreed on 1/2hr a day.
Here's what happened. Last week my supervisor told me that I was eligible to work overtime. The additional money could really help us out, so I was ecstatic. The only problem was telling Steve. In my mind, I was anticipating that he would be resistant to the idea.
You see, when Steve became ill and unable to work, I literally became the center of his universe. (And I totally get it, if I spent 5 days a week all by myself, I am sure I would feel the same way.) When I am not at work, we do almost everything together. And when I am at work, he looks forward to me coming home. Other than watching the news on TV, I am his lifeline to the outside world. I always try to be there for him. It's something that he has gotten used to and has come to expect. So sometimes, when I do have something to do that doesn't involve him, he's resistant. He won't tell me not to. He'll just come up with reasons why it may not be a good idea.
Well, we were sitting around watching tv, and I figured that was as good a time as any to mention it. And I told him that I was allowed to work overtime and that I would like to do so. Then I asked him what he thought of it. And he told me that he didn't think it was a good idea. He said he was afraid that I would get burnt out. And I snapped, and regrettably I said, "You don't think drowning in bills is going to burn me out!" The minute I said it I wished I could take it back. Steve's face fell, and we were both miserable.
We sat there for a while in silence. I apologized. Then we talked about it and agreed on 1/2hr a day.
Wednesday, January 13, 2010
Rejected by Roche Patient Assistance
As I mentioned in the blog on November 26th, even with insurance the copays are very expensive. Right now we pay $345 for the Ribavirin and $605 for the Pegasys each month. We applied for financial assistance with the co-pays a few weeks ago through Roche Patient Assistance Program, and we were just notified that we were denied.
To be completely honest, I found the entire process to be B.S. The first time I called I gave the representative our gross household income and insurance information. I asked what the eligibility requirements were and the representative couldn't tell me. The rep did inform me that in a few days I would get a call from someone at Roche notifying me if we were qualified to receive an application. About a week later, we received the call. After verifying our insurance information, Roche determined that we were qualified to apply, and we would receive the application in a few days. We did.
The application was very basic. It asked for our GROSS household income, insurance information and had a section for the doctor to fill out. Basically, the doctor's portion asked what type of Hep, how many weeks of treatment, where to send the drugs and required the doctor's signature. We were also required to send a copy of our tax return to verify our income and original prescriptions from the doctor.
So we filled out our portion, faxed it to the doctor to fill out his, and a few days later Steve picked up the application and the RX's at the doctors office. Then we sent everything to Roche and less than a week later we received a notice that said that we were denied because our income was over the limit.
I think it is pretty rediculous that it took 3 weeks to find out that our income was too high, when I told them what our income is the very first time I spoke with them! If the original rep would have known the eligibility requirements, obviously I wouldn't have applied, and we wouldn't have gotten our hopes up. BAD SYSTEM- Gives you hope for no reason!
To be completely honest, I found the entire process to be B.S. The first time I called I gave the representative our gross household income and insurance information. I asked what the eligibility requirements were and the representative couldn't tell me. The rep did inform me that in a few days I would get a call from someone at Roche notifying me if we were qualified to receive an application. About a week later, we received the call. After verifying our insurance information, Roche determined that we were qualified to apply, and we would receive the application in a few days. We did.
The application was very basic. It asked for our GROSS household income, insurance information and had a section for the doctor to fill out. Basically, the doctor's portion asked what type of Hep, how many weeks of treatment, where to send the drugs and required the doctor's signature. We were also required to send a copy of our tax return to verify our income and original prescriptions from the doctor.
So we filled out our portion, faxed it to the doctor to fill out his, and a few days later Steve picked up the application and the RX's at the doctors office. Then we sent everything to Roche and less than a week later we received a notice that said that we were denied because our income was over the limit.
I think it is pretty rediculous that it took 3 weeks to find out that our income was too high, when I told them what our income is the very first time I spoke with them! If the original rep would have known the eligibility requirements, obviously I wouldn't have applied, and we wouldn't have gotten our hopes up. BAD SYSTEM- Gives you hope for no reason!
Saturday, December 19, 2009
Disability Hearing and Week 5 Update
On Wednesday, Steve gave himself shot #5. The weeks seem to be flying by since he is back on the triple therapy. He has been doing really well this time. Recently he has experienced some dizziness and started itching but nothing like before. So hopefully, the addition of the Procrit will keep him from developing anemia again (and the breathlessness that went along with it).
He went to his disability hearing on the 4th. I went with him, but I wasn't allowed in the room when he was testifying. The lawyer wanted me to be a witness. He informed me when we got there, so I was totally unprepared. When I went into the room, the judge swore me in. And quite honestly, I was so nervous that it took me a minute to distinguish my right hand from my left. Then the lawyer asked me a bunch of questions, and I just answered to the best of my recollection. It was hard to remember the exact timeline of everything- especially since the questions were referring to 2002. Had I known I was going to be a witness...I would have gone through Steve's medical records again and committed the dates to memory.
One thing I can say is that I believe the judge and the vocational expert knew we weren't BSing. At one point, while I was talking, I looked over and saw that Steve was crying. I felt so bad. He tried to hide it but the tears just came pouring out. And I know the judge and vocational expert saw it as well. After the hearing, Steve and I sat around talking about all the things we forgot to mention. But I guess the most important thing is that we were honest, so whatever happens is what is meant to be.
Safe, Healthy, & Happy Holidays to Everyone!!!
He went to his disability hearing on the 4th. I went with him, but I wasn't allowed in the room when he was testifying. The lawyer wanted me to be a witness. He informed me when we got there, so I was totally unprepared. When I went into the room, the judge swore me in. And quite honestly, I was so nervous that it took me a minute to distinguish my right hand from my left. Then the lawyer asked me a bunch of questions, and I just answered to the best of my recollection. It was hard to remember the exact timeline of everything- especially since the questions were referring to 2002. Had I known I was going to be a witness...I would have gone through Steve's medical records again and committed the dates to memory.
One thing I can say is that I believe the judge and the vocational expert knew we weren't BSing. At one point, while I was talking, I looked over and saw that Steve was crying. I felt so bad. He tried to hide it but the tears just came pouring out. And I know the judge and vocational expert saw it as well. After the hearing, Steve and I sat around talking about all the things we forgot to mention. But I guess the most important thing is that we were honest, so whatever happens is what is meant to be.
Safe, Healthy, & Happy Holidays to Everyone!!!
Thursday, November 26, 2009
RX Drugs are Expensive Even with Insurance!
We filled his prescriptions with the new insurance (Humana Select HMO) for the first time. The Pegasys alone was $504, and the RibaPak cost $345. That's for a one month supply. As for the Alinia, that was only $50, but Humana only approved a 20 day supply. So Steve is going to have to call the doctor, and the doctor's assistant will have to straighten that out (hopefully).
I have to say that the doctor and his assistant have both been great. Anytime Steve needs anything they take care of it without any problem. Thank goodness for them!
Tomorrow I am going to call Roche Patient Assistance Foundation to see if we qualify for help with the cost of the drugs. In case anyone else needs help, the number is 1-877-757-6243. In addition, there are other pharmaceutical industry-sponsored patient assistance programs. For more information on those, the website is called Partnership for Prescription Assistance.
To those of you who celebrate it, we wish you a Happy Thanksgiving!
All the best to you and yours,
Lisa
I have to say that the doctor and his assistant have both been great. Anytime Steve needs anything they take care of it without any problem. Thank goodness for them!
Tomorrow I am going to call Roche Patient Assistance Foundation to see if we qualify for help with the cost of the drugs. In case anyone else needs help, the number is 1-877-757-6243. In addition, there are other pharmaceutical industry-sponsored patient assistance programs. For more information on those, the website is called Partnership for Prescription Assistance.
To those of you who celebrate it, we wish you a Happy Thanksgiving!
All the best to you and yours,
Lisa
Thursday, November 19, 2009
Steve's Back on the Treatment!
Steve went to the cardiologist on Tuesday. All the tests came back normal, and he was given the go ahead to go back on treatment.
The gastroenterologist says that he wants Steve to start from square one- which means he'll be on Triple Therapy for another 48 weeks. He'll have his first blood test in two weeks and every two weeks thereafter: just a standard CBC. At the 6 week point, he will have his viral load checked (which will be the first time since he's been off treatment.)
Steve's taking 1200mg of Ribavirin daily, 0.5ml of Pegasys once a week, and 1000mg of Alinia daily. On Saturday, he is going to start taking the Procrit again (40,000 units weekly), and he will remain on the Procrit throughout the Triple Therapy.
He's already feeling the effects of the meds. Couldn't sleep last night. Had several charlie horses in his legs. Today he has had a bad headache all day, and he is freezing again.
But as I've said before, if it works, it's all worth it. I am speaking for both my husband and myself when I say that!
The gastroenterologist says that he wants Steve to start from square one- which means he'll be on Triple Therapy for another 48 weeks. He'll have his first blood test in two weeks and every two weeks thereafter: just a standard CBC. At the 6 week point, he will have his viral load checked (which will be the first time since he's been off treatment.)
Steve's taking 1200mg of Ribavirin daily, 0.5ml of Pegasys once a week, and 1000mg of Alinia daily. On Saturday, he is going to start taking the Procrit again (40,000 units weekly), and he will remain on the Procrit throughout the Triple Therapy.
He's already feeling the effects of the meds. Couldn't sleep last night. Had several charlie horses in his legs. Today he has had a bad headache all day, and he is freezing again.
But as I've said before, if it works, it's all worth it. I am speaking for both my husband and myself when I say that!
Wednesday, November 11, 2009
Almost a Month Since He's Been Off Triple Therapy
My husband went to the cardiologist last week. He had an echocardiogram and a stress test. For the stress test, Steve was injected with a dye that enables the technician to see the heart in 3-D. After the injection, his blood pressure shot up, so the tech had to give him a blood pressure pill before performing the stress test.
The results won't be in until next week. Why it takes so long...I don't know. But the nurse insists that because the test is 3-D, it takes about 2 weeks to get the results. So based on that, Steve scheduled an appointment to see the cardiologist Wednesday the 18th.
If all goes well, the gastroenterologist said he can resume treatment immediately. So we are excited about that. We would like to get another viral load taken to see if there is a significant change since he has been off treatment (it will be a month on the 14th), but the doctor doesn't think it is necessary.
Right now, Steve is trying to psych himself back up to get ready for the treatment. He has the disability hearing on the fourth of December, and that is stressing him out. Because he waited too long to file a claim, we severely doubt he is going to get approved. Although we could really use the money, my main concern was the medical benefits, and I found out that he wouldn't be eligible for Medicare until 24 months after being approved for disability anyway. So at least, we have health coverage from my new job.
Once again, I can't stress enough what a great source of information http://www.socialsecurity.gov/ is. I wish we would have known about the site and all the information that is on it when Steve was first diagnosed. We wouldn't have waited and things would probably be very different right now. So as I said before, I hope that someone else can benefit from the lesson we have learned.
The results won't be in until next week. Why it takes so long...I don't know. But the nurse insists that because the test is 3-D, it takes about 2 weeks to get the results. So based on that, Steve scheduled an appointment to see the cardiologist Wednesday the 18th.
If all goes well, the gastroenterologist said he can resume treatment immediately. So we are excited about that. We would like to get another viral load taken to see if there is a significant change since he has been off treatment (it will be a month on the 14th), but the doctor doesn't think it is necessary.
Right now, Steve is trying to psych himself back up to get ready for the treatment. He has the disability hearing on the fourth of December, and that is stressing him out. Because he waited too long to file a claim, we severely doubt he is going to get approved. Although we could really use the money, my main concern was the medical benefits, and I found out that he wouldn't be eligible for Medicare until 24 months after being approved for disability anyway. So at least, we have health coverage from my new job.
Once again, I can't stress enough what a great source of information http://www.socialsecurity.gov/ is. I wish we would have known about the site and all the information that is on it when Steve was first diagnosed. We wouldn't have waited and things would probably be very different right now. So as I said before, I hope that someone else can benefit from the lesson we have learned.
Monday, November 2, 2009
Blood Test Results Are In - The Procrit is Working!!
Steve has been feeling a lot better The Procrit is working his RBC count (3.52), WBC count (3.8) and Hemoglobin (12) have all increased. And we've been getting along just like we did before the treatment. No more fighting over nothing. I am so happy. I feel like I have my husband back.
He feels bad about how irritable he was, but we both realize that is quite common and a side effect of the treatment. He was reading some blogs on Janis and Friends that he could really relate to. He told me that a lot of bloggers on treatment were talking about how they were fighting with their spouses over nothing but couldn't stop themselves.
Steve is going for his stress test (and echocardiagram) on Wednesday. If all goes well, he will be resuming the Triple Therapy with the addition of Procrit.
It has been a long hard road for him, but he definitely wants to continue the treatment (which makes me very happy)!
He feels bad about how irritable he was, but we both realize that is quite common and a side effect of the treatment. He was reading some blogs on Janis and Friends that he could really relate to. He told me that a lot of bloggers on treatment were talking about how they were fighting with their spouses over nothing but couldn't stop themselves.
Steve is going for his stress test (and echocardiagram) on Wednesday. If all goes well, he will be resuming the Triple Therapy with the addition of Procrit.
It has been a long hard road for him, but he definitely wants to continue the treatment (which makes me very happy)!
Sunday, November 1, 2009
Finally Stopped the Itching!!
Steve was going out of his mind from the itching. He said he felt like something was crawling all over him. It got so bad that he wasn't sleeping at all. He just wanted to jump out of his skin. The medication that our primary care physician prescribed ( Hydroxyzine HCL 25mg and Triamcinolone 0.1% Cream FOU) wasn't working at all.
So Monday I called a dermatologist, and they were nice enough to get Steve in the same day. The dermatologist prescribed Clobetasol Propionate Foam, 0.05%. The first night he used it my husband was able to sleep, and it has been working ever since. He itched a little here and there the first few days but nothing like before. He isn't itching at all anymore. He uses the foam twice a day (in the morning and before he goes to sleep).
So Monday I called a dermatologist, and they were nice enough to get Steve in the same day. The dermatologist prescribed Clobetasol Propionate Foam, 0.05%. The first night he used it my husband was able to sleep, and it has been working ever since. He itched a little here and there the first few days but nothing like before. He isn't itching at all anymore. He uses the foam twice a day (in the morning and before he goes to sleep).
Sunday, October 25, 2009
11 Days Off the Triple Therapy for Hepatitis C
He's been off the Hepatitis C Triple Therapy since October 14th. I realize that it is not enough time for him to feel completely himself again, but I would think that each day he should be feeling better and better. He's not. He is still very itchy. He tried Allegra, Benadryl, Claritin and Zyrtec. They didn't work. So our primary care physician prescribed Hydroxyzine HCL 25mg every 8 hours as needed and Triamcinolone 0.1% Cream FOU. First couple of days it worked but it's not working any longer. I don't think it is strong enough, and he has more rashes on him now than he did before.
In addition, he is still getting very cold. You would think after 2 Procrit shots that would be dwindling away as well. He is still getting very nauseous and has severe acid reflux as well.
I just hope that nothing is wrong. When Steve saw the gastroenterologist on the 13th, his blood test results showed that he had a low RBC count, low platelet count, and a low white blood cell count. The doctor said that Steve was anemic and he prescribed Procrit to increase Steve's RBC count. So I asked the doctor if he was going to order Neupogen for the low white blood cell count. His answer was that he wasn't concerned about Steve's white blood cell count. But now I am thinking maybe he should have been.
I believe that, when the doctor said my husband was anemic, he was referring to Aplastic Anemia. This type of anemia has the potential to be fatal if not treated properly, so I just hope the doctor prescribed the best possible treatment.
Steve is going for his first blood test since being off treatment tomorrow. Once we get the results, we'll both feel better. At the very least, we'll have a better idea of where he stands.
In addition, he is still getting very cold. You would think after 2 Procrit shots that would be dwindling away as well. He is still getting very nauseous and has severe acid reflux as well.
I just hope that nothing is wrong. When Steve saw the gastroenterologist on the 13th, his blood test results showed that he had a low RBC count, low platelet count, and a low white blood cell count. The doctor said that Steve was anemic and he prescribed Procrit to increase Steve's RBC count. So I asked the doctor if he was going to order Neupogen for the low white blood cell count. His answer was that he wasn't concerned about Steve's white blood cell count. But now I am thinking maybe he should have been.
I believe that, when the doctor said my husband was anemic, he was referring to Aplastic Anemia. This type of anemia has the potential to be fatal if not treated properly, so I just hope the doctor prescribed the best possible treatment.
Steve is going for his first blood test since being off treatment tomorrow. Once we get the results, we'll both feel better. At the very least, we'll have a better idea of where he stands.
Labels:
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Thursday, October 22, 2009
A Week and A Day Off Treatment
Steve's been off treatment for about a week now. Since the treatment gave him anemia, the gastroenterologist prescribed Procrit. After his first shot, he stopped experiencing short of breath. He still becomes unbearably cold sometimes (even with the thermostat on 77), but he took his second shot today, so hopefully that will stop as well. Still can't do much. Just walked the dogs with me and got dizzy, but that's not happening as often either.
Good news! Steve has been talking about going back on the treatment. He spoke to our family doctor yesterday. The doctor told him to make sure he waits until his red blood cell count has been back to normal for a few weeks. The doctor doesn't want him to resume the treatment until he feels that his RBC will remain stable. (If he goes back on treatment, he will remain on the Procrit for the duration of the tx.)
His mood is still not back to normal. But I guess mine isn't either. We are working on that too.
May all be well with you and yours,
Lisa
Good news! Steve has been talking about going back on the treatment. He spoke to our family doctor yesterday. The doctor told him to make sure he waits until his red blood cell count has been back to normal for a few weeks. The doctor doesn't want him to resume the treatment until he feels that his RBC will remain stable. (If he goes back on treatment, he will remain on the Procrit for the duration of the tx.)
His mood is still not back to normal. But I guess mine isn't either. We are working on that too.
May all be well with you and yours,
Lisa
Thursday, October 15, 2009
Day 2 - Off Treatment (Temporarily?)
I can't even begin to tell you how I feel right now. The whole idea of my husband not being on treatment is surreal. I feel like I dreamt that we went to the doctor, and I'm waiting to wake up.
Quite honestly, I know that right now my husband dreads the mere thought of going back on the treatment. It took everything out of him. I only hope that these feelings will pass. I know he had a really hard time. Words can't even describe how he felt. At times, he literally thought he might be dying. And still I can't help but feel it might be the only hope for us to have a future together.
Which is why I cried today when I saw the comment that Sheba left for me. She understands my hope and my fear. I read it to my husband. I just hope her words run through his mind if he gets the option to go back on treatment.
Thank you Sheba.
Quite honestly, I know that right now my husband dreads the mere thought of going back on the treatment. It took everything out of him. I only hope that these feelings will pass. I know he had a really hard time. Words can't even describe how he felt. At times, he literally thought he might be dying. And still I can't help but feel it might be the only hope for us to have a future together.
Which is why I cried today when I saw the comment that Sheba left for me. She understands my hope and my fear. I read it to my husband. I just hope her words run through his mind if he gets the option to go back on treatment.
Thank you Sheba.
Tuesday, October 13, 2009
Wk 12 Results Are In ... The Virus is Undetectable!
Good news. For the first time, the virus is totally undetectable!!
Although, we have hit a small bump in the road. The doctor is very concerned that my husband is experiencing such severe shortness of breath. The blood test did reveal that Steve is anemic (RBC 9.4), and the anemia could be the cause. However, since Steve's father had a history of heart disease, the doctor doesn't want to take any chances. He is ordering Procrit to increase his red blood cell count and temporarily taking Steve off the treatment.
The doctor wants Steve to see a cardiologist and have a stress test before he continues any further. If everything goes well with the stress test, he is going to go back on the treatment but this time with the addition of the Procrit.
I didn't know how Steve was going to react, but he was actuallly relieved. I think the doctor gave him the ok to do what he knew needed to be done. When we were leaving the building, he sat down on a bench in the doorway and started crying (sobbing). He then said, "At least we know it works, but I just couldn't take it anymore."
Right now he is looking forward to getting his strength back. A few minutes ago, he was talking about how he is going to prepare himself both mentally and physically to restart the treatment. At least now, he knows what to expect and hopefully with the addition of the procrit he'll have a better experience.
Most important is the fact that the triple therapy worked...at least up to this point. So there is hope, not only for my husband, but for others with genotype 4 (and studies are currently being conducted on genotype 1 as well).
Although, we have hit a small bump in the road. The doctor is very concerned that my husband is experiencing such severe shortness of breath. The blood test did reveal that Steve is anemic (RBC 9.4), and the anemia could be the cause. However, since Steve's father had a history of heart disease, the doctor doesn't want to take any chances. He is ordering Procrit to increase his red blood cell count and temporarily taking Steve off the treatment.
The doctor wants Steve to see a cardiologist and have a stress test before he continues any further. If everything goes well with the stress test, he is going to go back on the treatment but this time with the addition of the Procrit.
I didn't know how Steve was going to react, but he was actuallly relieved. I think the doctor gave him the ok to do what he knew needed to be done. When we were leaving the building, he sat down on a bench in the doorway and started crying (sobbing). He then said, "At least we know it works, but I just couldn't take it anymore."
Right now he is looking forward to getting his strength back. A few minutes ago, he was talking about how he is going to prepare himself both mentally and physically to restart the treatment. At least now, he knows what to expect and hopefully with the addition of the procrit he'll have a better experience.
Most important is the fact that the triple therapy worked...at least up to this point. So there is hope, not only for my husband, but for others with genotype 4 (and studies are currently being conducted on genotype 1 as well).
Tuesday, September 29, 2009
Thank You for Your Comments & Support
Sometimes I feel so isolated. It's really hard watching someone you love deteriorating right before your eyes; and there is nothing that you can do, because the very thing that is eating them up inside is the only hope of a cure. But when I get your comments, I know that I am not alone. We are not alone. And I thank you so much for being there!! You are the best medicine ~ for my husband and for me. So I just want to say thank you.
Sunday, September 27, 2009
Disability Hearing Scheduled
We heard from Social Security. My husband’s hearing is set for December 4th. I am not hopeful. As I said before, it is my understanding that in order to qualify for disability under Hepatitis C, your symptoms have to be extreme, i.e. internal bleeding, severe encephalopathy or on the transplant list. They don’t take into account the extreme fatigue, lack of stamina, and depression resulting from hep c.
I hope I’m wrong. I’ll let you. But if you’d like to get some info for yourself, the address is: http://www.ssa.gov/disability/professionals/bluebook/5.00-Digestive-Adult.htm#5_05.
Keep in mind that you may qualify under another category, such as mental disorder for depression. There’s a lot of important information on Social Security’s website. If we knew then, what we know now, we would have gone about the entire process very differently. So I hope someone out there can benefit from the lessons we have learned.
I hope I’m wrong. I’ll let you. But if you’d like to get some info for yourself, the address is: http://www.ssa.gov/disability/professionals/bluebook/5.00-Digestive-Adult.htm#5_05.
Keep in mind that you may qualify under another category, such as mental disorder for depression. There’s a lot of important information on Social Security’s website. If we knew then, what we know now, we would have gone about the entire process very differently. So I hope someone out there can benefit from the lessons we have learned.
Saturday, September 12, 2009
Study Shows Nitazoxanide Could Have the Potential to Eliminate the Need for Ribavirin in the Treatment of Hepatitis C
Found an article on Medical News Today's website that suggests that treatment with Nitazoxanide (Alinia) and peginterferon alpha-2a could have the potential to eliminate the need for ribavirin in the future. Thought it was interesting. Hope you do as well.
Romark Announces Presentation Of New Data For Nitazoxanide In Chronic Hepatitis C At AASLD 2008
Article Date: 04 Nov 2008 - 0:00 PDT
"Romark Laboratories, a privately held biopharmaceutical company, announced that data from studies of nitazoxanide in chronic hepatitis C virus (HCV) infection are being communicated in three presentations made at the 59th Annual Meeting of the American Association for the Study of Liver Diseases (AASLD), also known as The Liver Meeting(R), and the 50th Anniversary Meeting of the International Association for the Study of the Liver (IASL) in San Francisco, October 31 - November 4, 2008."These new studies confirm earlier data suggesting synergistic activity between nitazoxanide and peginterferon in genotype 4 patients and provide a first look at sustained virologic response in a limited number of genotype 1 patients," said Jean-Francois Rossignol, M.D., Chief Science Officer of Romark Laboratories and discoverer of nitazoxanide. "These data also provide interesting insights into the mechanism of action of nitazoxanide, including a potential role for its combination with STAT-C drugs, and confirm previous findings related to its safety."The three presentations include:-- "Evaluation of a 4 Week Lead-In Phase with Nitazoxanide (NTZ) Prior to Peginterferon (PEGIFN) Plus NTZ for Treatment of Chronic Hepatitis C: Final Report," J.F. Rossignol et al., Sunday, November 2, 4:15 PM PST (Oral Session IASL #87), and Tuesday, November 4, 8:00 AM - 12:30 PM PST (AASLD Presidential Poster #1848)In this Phase II study, 44 patients (40 with HCV genotype 4; 3 with HCV genotype 1; and 1 with HCV genotype 2) received 4 weeks of nitazoxanide 500 mg twice daily followed by Pegasys(R) (peginterferon alfa-2a) and nitazoxanide for 36 weeks. Data from Romark's STEALTH C-1 trial was used as an historical control. Analysis of data was by intention-to-treat.Thirty-five of 44 patients (80%) treated with a 4-week lead-in phase of nitazoxanide followed by the addition of peginterferon for 36 weeks experienced a SVR 24 weeks after the end of treatment compared to 50% in the standard of care (SOC, peginterferon alfa-2a plus ribavirin for 48 weeks) historical control group (P = 0.006), 61% in patients receiving a 12-week lead-in with nitazoxanide followed by 36 weeks of nitazoxanide plus peginterferon alfa-2a, and 79% in patients receiving a 12-week lead-in with nitazoxanide followed by 36 weeks of nitazoxanide plus SOC.Of the 44 patients in the study, 78% (n=40) of patients with HCV genotype 4, 100% (n=3) of patients with HCV genotype 1, and 100% (n=1) of HCV genotype 2, had an SVR with undetectable virus at 24 weeks following end of treatment.Adverse events reported for these 44 patients were similar to those reported in the STEALTH C-1 trial. Patients treated with nitazoxanide experienced no more side effects than patients who received the SOC therapy. Only one of the 44 patients discontinued therapy due to noncompliance. There were no serious adverse events or discontinuations due to adverse events."These data confirm findings of our STEALTH C-1 trial related to safety and efficacy of nitazoxanide in patients infected with HCV genotype 4, show that the nitazoxanide lead-in phase prior to standard of care treatment can be reduced from 12 to 4 weeks, and indicate that ribavirin may not be needed to maintain SVR," said Emmet B. Keeffe, M.D., Chief Medical Officer of Romark Laboratories.-- "Potential Role for Nitazoxanide in Combination with STAT-C Agents for the Inhibition of HCV Replication Without the Development of Resistance," Korba, et al. Sunday Nov. 2, 5:30 PM PST (Oral Session #115)This oral presentation by Brent Korba, Ph.D. of Georgetown University Medical Center, described preclinical studies demonstrating synergistic interactions between nitazoxanide and direct-acting antiviral drugs targeting NS5B (2'C methylcytidine and HCV-796) and NS3 (telaprevir and BILN-2061) in HCV replicons. Nitazoxanide was also active against telaprevir- and 2'C methylcytidine-resistant mutant replicons. The authors concluded that nitazoxanide is a good candidate for combination therapies with STAT-C agents in the absence of interferon or ribavirin.-- "Nitazoxanide (NTZ) is an Inducer of eIF2a and PKR phosphorylation," Elazar et al., Tuesday, November 4, 8:00 AM - 12:30 PM PST (Poster #1881)This poster presentation by Menashe Elazar, Ph.D. of the Division of Gastroenterology and Hepatology, Department of Medicine, Stanford University School of Medicine, showed that nitazoxanide increases the intracellular levels of phosphorylated eukaryotic translation initiation factor 2alpha (eIF2alpha), a key mediator of host cell antiviral defenses. Co-treatment with interferon increased nitazoxanide-induced eIF2alpha phosphorylation. . Nitazoxanide was also shown to increase the phosphorylation of protein kinase R (PKR), a key step in the activation of PKR's kinase activity towards eIF2alpha."Data presented in each of these communications has provided important information in guiding the ongoing clinical development of nitazoxanide," said Dr. Rossignol.About Hepatitis CHepatitis C is a blood-borne infectious disease that is caused by the hepatitis C virus (HCV). It is the most common cause of chronic hepatitis in the U.S. and may eventually lead to cirrhosis, liver cancer and liver failure. The disease is transmitted by contact with HCV-infected blood. A large majority of those infected do not show symptoms, but fatigue, abdominal pain and nausea can be common. The current standard treatment of care, peginterferon and ribavirin, is effective in about half of all patients treated. According to the Centers for Disease Control, HCV affects an estimated 4.1 million Americans.About Romark LaboratoriesRomark Laboratories (http://www.romark.com/news/11032008.aspx), a privately held biopharmaceutical company, has discovered and developed a new class of small molecule antivirals known as thiazolides. The Company is developing nitazoxanide, the first of the thiazolide class, for the treatment of chronic hepatitis C, and is developing other new thiazolides for treating viral diseases including chronic hepatitis B. Alinia(R) (nitazoxanide) is approved by the U.S. Food and Drug Administration and marketed by Romark for the treatment of Cryptosporidium and Giardia infection.Romark Laboratories http://www.romark.com/news/11032008.aspx
I found the article in Medical News today. To access the article directly, the address is: http://www.medicalnewstoday.com/articles/127968.php.
Romark Announces Presentation Of New Data For Nitazoxanide In Chronic Hepatitis C At AASLD 2008
Article Date: 04 Nov 2008 - 0:00 PDT
"Romark Laboratories, a privately held biopharmaceutical company, announced that data from studies of nitazoxanide in chronic hepatitis C virus (HCV) infection are being communicated in three presentations made at the 59th Annual Meeting of the American Association for the Study of Liver Diseases (AASLD), also known as The Liver Meeting(R), and the 50th Anniversary Meeting of the International Association for the Study of the Liver (IASL) in San Francisco, October 31 - November 4, 2008."These new studies confirm earlier data suggesting synergistic activity between nitazoxanide and peginterferon in genotype 4 patients and provide a first look at sustained virologic response in a limited number of genotype 1 patients," said Jean-Francois Rossignol, M.D., Chief Science Officer of Romark Laboratories and discoverer of nitazoxanide. "These data also provide interesting insights into the mechanism of action of nitazoxanide, including a potential role for its combination with STAT-C drugs, and confirm previous findings related to its safety."The three presentations include:-- "Evaluation of a 4 Week Lead-In Phase with Nitazoxanide (NTZ) Prior to Peginterferon (PEGIFN) Plus NTZ for Treatment of Chronic Hepatitis C: Final Report," J.F. Rossignol et al., Sunday, November 2, 4:15 PM PST (Oral Session IASL #87), and Tuesday, November 4, 8:00 AM - 12:30 PM PST (AASLD Presidential Poster #1848)In this Phase II study, 44 patients (40 with HCV genotype 4; 3 with HCV genotype 1; and 1 with HCV genotype 2) received 4 weeks of nitazoxanide 500 mg twice daily followed by Pegasys(R) (peginterferon alfa-2a) and nitazoxanide for 36 weeks. Data from Romark's STEALTH C-1 trial was used as an historical control. Analysis of data was by intention-to-treat.Thirty-five of 44 patients (80%) treated with a 4-week lead-in phase of nitazoxanide followed by the addition of peginterferon for 36 weeks experienced a SVR 24 weeks after the end of treatment compared to 50% in the standard of care (SOC, peginterferon alfa-2a plus ribavirin for 48 weeks) historical control group (P = 0.006), 61% in patients receiving a 12-week lead-in with nitazoxanide followed by 36 weeks of nitazoxanide plus peginterferon alfa-2a, and 79% in patients receiving a 12-week lead-in with nitazoxanide followed by 36 weeks of nitazoxanide plus SOC.Of the 44 patients in the study, 78% (n=40) of patients with HCV genotype 4, 100% (n=3) of patients with HCV genotype 1, and 100% (n=1) of HCV genotype 2, had an SVR with undetectable virus at 24 weeks following end of treatment.Adverse events reported for these 44 patients were similar to those reported in the STEALTH C-1 trial. Patients treated with nitazoxanide experienced no more side effects than patients who received the SOC therapy. Only one of the 44 patients discontinued therapy due to noncompliance. There were no serious adverse events or discontinuations due to adverse events."These data confirm findings of our STEALTH C-1 trial related to safety and efficacy of nitazoxanide in patients infected with HCV genotype 4, show that the nitazoxanide lead-in phase prior to standard of care treatment can be reduced from 12 to 4 weeks, and indicate that ribavirin may not be needed to maintain SVR," said Emmet B. Keeffe, M.D., Chief Medical Officer of Romark Laboratories.-- "Potential Role for Nitazoxanide in Combination with STAT-C Agents for the Inhibition of HCV Replication Without the Development of Resistance," Korba, et al. Sunday Nov. 2, 5:30 PM PST (Oral Session #115)This oral presentation by Brent Korba, Ph.D. of Georgetown University Medical Center, described preclinical studies demonstrating synergistic interactions between nitazoxanide and direct-acting antiviral drugs targeting NS5B (2'C methylcytidine and HCV-796) and NS3 (telaprevir and BILN-2061) in HCV replicons. Nitazoxanide was also active against telaprevir- and 2'C methylcytidine-resistant mutant replicons. The authors concluded that nitazoxanide is a good candidate for combination therapies with STAT-C agents in the absence of interferon or ribavirin.-- "Nitazoxanide (NTZ) is an Inducer of eIF2a and PKR phosphorylation," Elazar et al., Tuesday, November 4, 8:00 AM - 12:30 PM PST (Poster #1881)This poster presentation by Menashe Elazar, Ph.D. of the Division of Gastroenterology and Hepatology, Department of Medicine, Stanford University School of Medicine, showed that nitazoxanide increases the intracellular levels of phosphorylated eukaryotic translation initiation factor 2alpha (eIF2alpha), a key mediator of host cell antiviral defenses. Co-treatment with interferon increased nitazoxanide-induced eIF2alpha phosphorylation. . Nitazoxanide was also shown to increase the phosphorylation of protein kinase R (PKR), a key step in the activation of PKR's kinase activity towards eIF2alpha."Data presented in each of these communications has provided important information in guiding the ongoing clinical development of nitazoxanide," said Dr. Rossignol.About Hepatitis CHepatitis C is a blood-borne infectious disease that is caused by the hepatitis C virus (HCV). It is the most common cause of chronic hepatitis in the U.S. and may eventually lead to cirrhosis, liver cancer and liver failure. The disease is transmitted by contact with HCV-infected blood. A large majority of those infected do not show symptoms, but fatigue, abdominal pain and nausea can be common. The current standard treatment of care, peginterferon and ribavirin, is effective in about half of all patients treated. According to the Centers for Disease Control, HCV affects an estimated 4.1 million Americans.About Romark LaboratoriesRomark Laboratories (http://www.romark.com/news/11032008.aspx), a privately held biopharmaceutical company, has discovered and developed a new class of small molecule antivirals known as thiazolides. The Company is developing nitazoxanide, the first of the thiazolide class, for the treatment of chronic hepatitis C, and is developing other new thiazolides for treating viral diseases including chronic hepatitis B. Alinia(R) (nitazoxanide) is approved by the U.S. Food and Drug Administration and marketed by Romark for the treatment of Cryptosporidium and Giardia infection.Romark Laboratories http://www.romark.com/news/11032008.aspx
I found the article in Medical News today. To access the article directly, the address is: http://www.medicalnewstoday.com/articles/127968.php.
Tuesday, September 8, 2009
Wk 8 of Triple Therapy: Experiencing Severe Shortness of Breath
I am really worried. Went out this evening, just to walk the dog, with my husband. (It was a short walk.)
My husband got so out of breath I thought he was going to collapse again. He said his chest felt really tight, and he could hardly breath. He also said it happens often, but he doesn't want to tell the doctor. He's afraid he'll stop the treatment. I'm afraid he is going to have a heart attack.
I don't know what to do...
My husband got so out of breath I thought he was going to collapse again. He said his chest felt really tight, and he could hardly breath. He also said it happens often, but he doesn't want to tell the doctor. He's afraid he'll stop the treatment. I'm afraid he is going to have a heart attack.
I don't know what to do...
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