I saw my GP on Friday. The plan for keeping me going is to get some extra support, but not adjust the anti-depressants:
- 10 weeks talking therapy sessions;- set milestones and put 'rewards' in place for reaching them;
- get a personal trainer to see once every 4 weeks, again, to help keep me motivated regarding nutrition and exercise.
I feel it's a good plan. If it gets me through the next 10 weeks, then that's 10 more done!
Two other discoveries - putting a little bit of vaseline over the crack in my nostril is allowing it to heal, which is great as that had been sore for months. It's fine to cover your head in Aveeno moisturising lotion for itch relief. It makes pretty good conditioner.
My hgb is still 11.9 (i.e. i'm a little bit anaemic) , and my neutrophils are up to 0.85. The rest of my blood results are normal, so my meds are staying as they are. I'm still on 1000mg ribavirin and 1800mcg interferon, and taking lenograstim once a week.
I took my Boceprevir two hours late this morning. I turned my phone alarm off without waking up. So there was nearly 10 hours between two doses. It's the first time I've taken a dose late, so I think it shouldn't matter too much... nothing I can do about it now.
Showing posts with label neutropenia. Show all posts
Showing posts with label neutropenia. Show all posts
Sunday, 28 July 2013
Thursday, 9 May 2013
23. 9 May 2013 - Back up to 180 mcg interferon, and my theory on disappointment
The Lenograstim is already working. I injected it on Sunday night, and my neutrophils were back up to 2.1 on Wednesday, so now I'm back on 180 mcg Interferon.
Not getting the result I wanted in my last viral load test has motivated me to make sure I'm doing everything I can, so I volunteered to go back for another full blood count blood test, to get back on the full dose of interferon as soon as possible.
I wrote my last post at a low moment, I'd just got the viral load test results back and they weren't what I wanted. I posted a moan on here and on the forums, went for a personal training session, and within an hour, was fine with it.
I like to be positive and not worry, to assume that the best will happen. I had got myself in a frame of mind where I was expecting to see "undetectable". It's a danger, that by thinking positively, I set myself up for disappointment. But, the disappointment doesn't last long, a few hours. Whereas, I feel, if I tried to prepare myself for less than ideal news, I would spend many more hours feeling low.
I've got 2 weeks to go until my 12 week viral load tests. If I don't make the cut-off, then treatment is over. No point worrying about it. I'm doing my best.
The next thing, assuming I continue on treatment, is my platelets - apparently they are falling quite quickly. They are ok at present, but if they fall much more then once again I'll be on the lower dose of interferon. My next tests are on the 20th of May, before my clinic appointment on the 21st.
Not getting the result I wanted in my last viral load test has motivated me to make sure I'm doing everything I can, so I volunteered to go back for another full blood count blood test, to get back on the full dose of interferon as soon as possible.
I wrote my last post at a low moment, I'd just got the viral load test results back and they weren't what I wanted. I posted a moan on here and on the forums, went for a personal training session, and within an hour, was fine with it.
I like to be positive and not worry, to assume that the best will happen. I had got myself in a frame of mind where I was expecting to see "undetectable". It's a danger, that by thinking positively, I set myself up for disappointment. But, the disappointment doesn't last long, a few hours. Whereas, I feel, if I tried to prepare myself for less than ideal news, I would spend many more hours feeling low.
I've got 2 weeks to go until my 12 week viral load tests. If I don't make the cut-off, then treatment is over. No point worrying about it. I'm doing my best.
The next thing, assuming I continue on treatment, is my platelets - apparently they are falling quite quickly. They are ok at present, but if they fall much more then once again I'll be on the lower dose of interferon. My next tests are on the 20th of May, before my clinic appointment on the 21st.
Friday, 3 May 2013
21. 3 May 2013 - Lenograstim
My neutrophils were back down to 0.41 on Wednesday, so I now have Lenograstim. It comes as a kit! With a powder and water you have to mix and two syringes. I wasn't expecting that. The pharmacist took me through it at the hospital. How wrong can I go?!?
On the forum, I was advised not to inject myself with the G-CSF and Interferon on the same day, as it will knock me for six, so I'm going to wait until Monday to try it.
Cor I'm tired today. Today is usually my good day, Friday, just before the injection. Every week so far I've managed to go to the gym on Friday. Not today though.
I've been running around all day. The car battery was flat so I had to get the AA to take me to the garage for the car service and MOT, then I had an appointment, the a half hour walk back and waiting ages to pick the car up and drive home. Then a walk to the hospital to pick up my new prescription. Is it bed time yet? Little moans. All is well.
My GP has put my anti-depressant dose up, and I think that's helping my concentration and mood, so work's a bit easier.
Off to steam my head now! (I feel it really helps clear the nasty dried mucous that fills my ears, sinuses and chest.)
On the forum, I was advised not to inject myself with the G-CSF and Interferon on the same day, as it will knock me for six, so I'm going to wait until Monday to try it.
Cor I'm tired today. Today is usually my good day, Friday, just before the injection. Every week so far I've managed to go to the gym on Friday. Not today though.
I've been running around all day. The car battery was flat so I had to get the AA to take me to the garage for the car service and MOT, then I had an appointment, the a half hour walk back and waiting ages to pick the car up and drive home. Then a walk to the hospital to pick up my new prescription. Is it bed time yet? Little moans. All is well.
My GP has put my anti-depressant dose up, and I think that's helping my concentration and mood, so work's a bit easier.
Off to steam my head now! (I feel it really helps clear the nasty dried mucous that fills my ears, sinuses and chest.)
Saturday, 27 April 2013
19. 27 April 2013 - 8 weeks done
Yesterday was the end of week 8 of my Hep C treatment regime.
I'm feeling ok still, kind of ok, the kind of ok where you have a doctor's appointment in the morning to discuss increasing your anti-depressant dose. My head feels bleary, as my eyes are. I can't hold thoughts in the right place, they just slide off centre and fall out into the recesses of my brain before I can work with them. It's frustrating. I feel useless and like I'm always saying the wrong thing. That's pretty much the worst of it though.
I need to sleep a lot; about 10-11 hours a night to feel refreshed. Nightmares have become a regularity. One in which rats sneaked up and bit my face whenever I drifted off to sleep was a low point. I'm hoping that increasing the anti-depressant dose will at least mean that I have happier weird dreams.
I know I'd feel much better if I was sleeping more deeply, but haven't found a solution. I am sleeping, just not well. The hospital have suggested zopiclone, but I've had it before and it made me feel worse than I feel now. Valerian helps, but I'm nervous about taking it. I looked it up on drugs.com and couldn't find an interaction with Boceprevir, Ribavirin or Interferon, so started taking it. Then I discussed it with the nurse at the hospital who pointed out that because Valerian isn't a registered medicine it won't show on the interaction databases, and the advice is not to take supplements on treatment. I'm compromising by having Valerian tea rather than the pills - as no one seems to have anything bad to say about herbal tea, only "supplements", perhaps because the active ingredients are less concentrated, or perhaps just because nobody has thought about it.
Yesterday at the gym, my 2k rowing time was about 10 mins 15 seconds - that's not far off where I was when I started, and much better than a couple of weeks ago. I had energy. I had bounce. I had joie de vivre. In my daydream interpretation of my side-effects, this is because the day before was the day when the virus died, and now my body doesn't have to deal with fighting it any more, just with the medicine.
My end of week 8 Viral Loads will support or disprove that theory. They aren't used for determining whether to continue treatment, but the FDA approved package insert shows that in the initial clinical trials, 88% of those with undetectable virus levels at week 8 went on to clear the virus, verses 43% of those where the virus was detectable at week 8. I will get my week 8 results in two to three weeks time - eek!
Other stuff which is a bit rubbish - I spend most nights in the spare bed, not snuggled up with my love. I sleep so lightly and am tossing and turning and coughing etc, that I wake him up, then he wakes me up. We both sleep better in separate beds at the moment.
I'm still severely neutropenic, and the clinic head is still putting off giving me G-CSF to stimulate my bone marrow to produce more white blood cells. Current plan, I have more blood tests on Wednesday, and if there hasn't been an improvement then I get Lenograstim.
I've also managed to persuade the nurse to give me a vitamin D test. In the end I emailed him the papers I'd found suggesting that it's important for successful treatment that your vitamin D, B and A levels are all good. Here are the studies I found:
Tips:
- don't eat acid food (e.g. oranges, tinned peached) with your Boceprevir, take them with milk.
- exercise as much as you can;
- Aveeno bath/shower oil.
My blood test results so far
Thanks for listening. x
I'm feeling ok still, kind of ok, the kind of ok where you have a doctor's appointment in the morning to discuss increasing your anti-depressant dose. My head feels bleary, as my eyes are. I can't hold thoughts in the right place, they just slide off centre and fall out into the recesses of my brain before I can work with them. It's frustrating. I feel useless and like I'm always saying the wrong thing. That's pretty much the worst of it though.
I need to sleep a lot; about 10-11 hours a night to feel refreshed. Nightmares have become a regularity. One in which rats sneaked up and bit my face whenever I drifted off to sleep was a low point. I'm hoping that increasing the anti-depressant dose will at least mean that I have happier weird dreams.
I know I'd feel much better if I was sleeping more deeply, but haven't found a solution. I am sleeping, just not well. The hospital have suggested zopiclone, but I've had it before and it made me feel worse than I feel now. Valerian helps, but I'm nervous about taking it. I looked it up on drugs.com and couldn't find an interaction with Boceprevir, Ribavirin or Interferon, so started taking it. Then I discussed it with the nurse at the hospital who pointed out that because Valerian isn't a registered medicine it won't show on the interaction databases, and the advice is not to take supplements on treatment. I'm compromising by having Valerian tea rather than the pills - as no one seems to have anything bad to say about herbal tea, only "supplements", perhaps because the active ingredients are less concentrated, or perhaps just because nobody has thought about it.
Yesterday at the gym, my 2k rowing time was about 10 mins 15 seconds - that's not far off where I was when I started, and much better than a couple of weeks ago. I had energy. I had bounce. I had joie de vivre. In my daydream interpretation of my side-effects, this is because the day before was the day when the virus died, and now my body doesn't have to deal with fighting it any more, just with the medicine.
My end of week 8 Viral Loads will support or disprove that theory. They aren't used for determining whether to continue treatment, but the FDA approved package insert shows that in the initial clinical trials, 88% of those with undetectable virus levels at week 8 went on to clear the virus, verses 43% of those where the virus was detectable at week 8. I will get my week 8 results in two to three weeks time - eek!
Other stuff which is a bit rubbish - I spend most nights in the spare bed, not snuggled up with my love. I sleep so lightly and am tossing and turning and coughing etc, that I wake him up, then he wakes me up. We both sleep better in separate beds at the moment.
I'm still severely neutropenic, and the clinic head is still putting off giving me G-CSF to stimulate my bone marrow to produce more white blood cells. Current plan, I have more blood tests on Wednesday, and if there hasn't been an improvement then I get Lenograstim.
I've also managed to persuade the nurse to give me a vitamin D test. In the end I emailed him the papers I'd found suggesting that it's important for successful treatment that your vitamin D, B and A levels are all good. Here are the studies I found:
- http://hepatitiscnewdrugs.blogspot.ca/2013/02/vitamins-magic-bullet-against-hepatitis.html
- http://www.hepctrust.org.uk/News_Resources/news/2013/April/Lo+levels+of+vit+A+and+D+associated+with+hcv+and+non+response+to+treatment
- http://www.hepctrust.org.uk/News_Resources/news/2012/January/Can+adding+vitamin+D+improve+response+to+HCV+antiviral+therapy#.UR4i5kZoNNY.blogger
Tips:
- don't eat acid food (e.g. oranges, tinned peached) with your Boceprevir, take them with milk.
- exercise as much as you can;
- Aveeno bath/shower oil.
My blood test results so far
Thanks for listening. x
Friday, 12 April 2013
18. 12 April 2013 - Week 4 Viral loads and end of week 6
My week 6 blood test results from Tuesday were a little bit better than my week 4 results. They showed that I'm still neutropenic, but less so, and the clinic head has decided that for the moment we'll keep going as we are.
At week 4 my neutrophil count had dropped to 0.41, and the nurse had reduced the Interferon dose from 180mg to 135 mg. At week 6 it had increased to 0.51.
I'd emailed the nurse, hoping that they would give me G-CSF and put me back onto 180mg of interferon. I was concerned that as I hadn't been responsive to interferon the first time I did treatment, that reducing the dose would impact on my chances of the holy grail of treatment, Sustained Virological Response, or, SVR. I've been feeling a bit more poorly as well, with a runny nose and a sore throat and blocked sinuses. I hoped that with Neupogen I might feel better.
After talking to the clinic head yesterday, the nurse told me this morning that there would be no change to my medicine at the moment. The clinic head had seen some research (I should have asked for a reference but didn't think) to show that the dosing of interferon was much less important with triple therapy than the old standard of care treatment, and so that reducing my interferon dose to 135mg would have little impact on my changes of cure.
Their "threshold" level for when to act on a low neutrophil count is 0.5, so this week I just came above the threshold. If my neutrophils drop below 0.5 then they will give me G-CSF rather than reduce my interferon dose any more. If it goes above 0.6 then I'll be put back on 180mg.
I wonder whether the timing of the test has any impact. Apparently neutrophils only live 3 days. I have my injections on Friday, so would probably be producing fewest neutrophils on Saturday, Sunday and Monday, and so have fewest on Tuesday. If I was tested on a Friday or Saturday morning, maybe I'd get a different result?
I asked the pharmacist if there was anything I could do about the discomfort in my sinuses, and she suggested steam inhalation with Olbas Oil, and that has helped. I don't feel the pressure behind my eye and it unblocked my ear.
Good news with my week 4 virus load tests. 4,785. That sounds pretty good! Unfortunately, I don't know how much of a drop that is, as the hospital lost my baseline tests. Generally my background viral loads have been around 120,000 - 150,000, although they did fall as low 13,000 when I got swine flu. Still, my week 12 viral load was 3,567 the first time I did the treatment, and I'm nearly there already. I think it's the Vitamin D3 which is making the difference.
The side effects from Boceprevir are still very mild. I felt really nauseous one evening, and took an anti-mimetic and was ok. I get a slight taste in my mouth, but it doesn't interfere with my pleasure in eating at all. I wake up wet with sweat nearly every morning, the flu like symptoms are a little worse, the aches and pains and shakiness.
This week depression has showed it's ugly mug for the first time so far. Just that back ground feeling of unease, of not being good enough, of people being not pleased with me. It's complicated by being, quite simply, more stupid than usual; and so being less sensitive to other people's feelings, less effective at work etc.
A new side effect - my eyes are so dry that they cloud over quite often. I will look into eyedrops, no pun intended.
I still feel pretty much ok though. The next milestone is my week 8 blood test. Then I'll find out how effecting adding Victrelis to the mix has been...
At week 4 my neutrophil count had dropped to 0.41, and the nurse had reduced the Interferon dose from 180mg to 135 mg. At week 6 it had increased to 0.51.
I'd emailed the nurse, hoping that they would give me G-CSF and put me back onto 180mg of interferon. I was concerned that as I hadn't been responsive to interferon the first time I did treatment, that reducing the dose would impact on my chances of the holy grail of treatment, Sustained Virological Response, or, SVR. I've been feeling a bit more poorly as well, with a runny nose and a sore throat and blocked sinuses. I hoped that with Neupogen I might feel better.
After talking to the clinic head yesterday, the nurse told me this morning that there would be no change to my medicine at the moment. The clinic head had seen some research (I should have asked for a reference but didn't think) to show that the dosing of interferon was much less important with triple therapy than the old standard of care treatment, and so that reducing my interferon dose to 135mg would have little impact on my changes of cure.
Their "threshold" level for when to act on a low neutrophil count is 0.5, so this week I just came above the threshold. If my neutrophils drop below 0.5 then they will give me G-CSF rather than reduce my interferon dose any more. If it goes above 0.6 then I'll be put back on 180mg.
I wonder whether the timing of the test has any impact. Apparently neutrophils only live 3 days. I have my injections on Friday, so would probably be producing fewest neutrophils on Saturday, Sunday and Monday, and so have fewest on Tuesday. If I was tested on a Friday or Saturday morning, maybe I'd get a different result?
I asked the pharmacist if there was anything I could do about the discomfort in my sinuses, and she suggested steam inhalation with Olbas Oil, and that has helped. I don't feel the pressure behind my eye and it unblocked my ear.
Good news with my week 4 virus load tests. 4,785. That sounds pretty good! Unfortunately, I don't know how much of a drop that is, as the hospital lost my baseline tests. Generally my background viral loads have been around 120,000 - 150,000, although they did fall as low 13,000 when I got swine flu. Still, my week 12 viral load was 3,567 the first time I did the treatment, and I'm nearly there already. I think it's the Vitamin D3 which is making the difference.
The side effects from Boceprevir are still very mild. I felt really nauseous one evening, and took an anti-mimetic and was ok. I get a slight taste in my mouth, but it doesn't interfere with my pleasure in eating at all. I wake up wet with sweat nearly every morning, the flu like symptoms are a little worse, the aches and pains and shakiness.
This week depression has showed it's ugly mug for the first time so far. Just that back ground feeling of unease, of not being good enough, of people being not pleased with me. It's complicated by being, quite simply, more stupid than usual; and so being less sensitive to other people's feelings, less effective at work etc.
A new side effect - my eyes are so dry that they cloud over quite often. I will look into eyedrops, no pun intended.
I still feel pretty much ok though. The next milestone is my week 8 blood test. Then I'll find out how effecting adding Victrelis to the mix has been...
Wednesday, 27 March 2013
15. 27 March 2013 - mixed and missing blood test results
Yesterday was my second appointment with the Hep C clinic nurse, my first after starting treatment.
We started off the appointment going through the side effects. He prescribed hydrocortisone cream for my knee rash, which is already helping. He was also happy to give me some anti-memitics, in case the Boceprevir makes me sick.
After going through the side effects we had a look at my blood test results from the day before, and two weeks before. My neutrophil count fell through the floor in the last test, down to 0.41; severe neutropenia. We were both shocked. Last time I did the treatment my neutrophils stayed at around 1.3, which whilst low is fairly safe. Anything under 0.5 makes you very prone to bacterial infection. The nurse thought it might well be an anomaly in the test, but of course we don't know that, so have to assume it's accurate until the next set of blood tests are in.
This was a bit of a blow to be honest. It means that I'm going to be on a lower dose of interferon (to 135, from 180), which slightly reduces my chance of successful treatment. It's also a worry generally. Now every sniffle and graze is going to be a threat. I'd just waxed my legs that morning, which is sure way of getting spots - so now I smell of TCP. I even gargled with TCP that evening - disgusting: like washing your mouth out with soap.
On the up side, I don't have anaemia; my red blood cells have increased since I started treatment. Also, although I do need to be reasonably careful to avoid infection, from what I've found on the internet, interferon induced neutropenia doesn't seem to necessarily cause serious infections and problems: e.g. http://www.hcvadvocate.org/hepatitis/hepC/Neutropenia.html. Another plus, I told the nurse that I feel that getting my blood tests regularly will motivate me, as I see them as little milestones, and he took it on I think, so hopefully he will respond in future when I ask for my results.
The next blood tests are in two weeks, and then I need to call for the results the following day. If my neutrophils have returned to a safe level the nurse will increase my interferon again.
I've bought some 1000mg vitamin C with zinc pills, and will have one every day until the tests. I'm craving fruit, and hope that I crave fruit because my body needs the vitamin C, and that taking extra will support my white blood cell count. Fishwife logic, but there isn't really a downside.
Annoyingly, the hospital lost my starting viral load tests. Nothing can be done, apparently. The sample isn't recorded as having been received by the lab, so it's not just late, it's lost. I'll have to use my viral load from the prior year as my baseline count, which was about 146,000.
I came home with a huge box of medicine, bigger than a shoe box, with the Victrelis in. I start taking it on Friday...
We started off the appointment going through the side effects. He prescribed hydrocortisone cream for my knee rash, which is already helping. He was also happy to give me some anti-memitics, in case the Boceprevir makes me sick.
After going through the side effects we had a look at my blood test results from the day before, and two weeks before. My neutrophil count fell through the floor in the last test, down to 0.41; severe neutropenia. We were both shocked. Last time I did the treatment my neutrophils stayed at around 1.3, which whilst low is fairly safe. Anything under 0.5 makes you very prone to bacterial infection. The nurse thought it might well be an anomaly in the test, but of course we don't know that, so have to assume it's accurate until the next set of blood tests are in.
This was a bit of a blow to be honest. It means that I'm going to be on a lower dose of interferon (to 135, from 180), which slightly reduces my chance of successful treatment. It's also a worry generally. Now every sniffle and graze is going to be a threat. I'd just waxed my legs that morning, which is sure way of getting spots - so now I smell of TCP. I even gargled with TCP that evening - disgusting: like washing your mouth out with soap.
On the up side, I don't have anaemia; my red blood cells have increased since I started treatment. Also, although I do need to be reasonably careful to avoid infection, from what I've found on the internet, interferon induced neutropenia doesn't seem to necessarily cause serious infections and problems: e.g. http://www.hcvadvocate.org/hepatitis/hepC/Neutropenia.html. Another plus, I told the nurse that I feel that getting my blood tests regularly will motivate me, as I see them as little milestones, and he took it on I think, so hopefully he will respond in future when I ask for my results.
The next blood tests are in two weeks, and then I need to call for the results the following day. If my neutrophils have returned to a safe level the nurse will increase my interferon again.
I've bought some 1000mg vitamin C with zinc pills, and will have one every day until the tests. I'm craving fruit, and hope that I crave fruit because my body needs the vitamin C, and that taking extra will support my white blood cell count. Fishwife logic, but there isn't really a downside.
Annoyingly, the hospital lost my starting viral load tests. Nothing can be done, apparently. The sample isn't recorded as having been received by the lab, so it's not just late, it's lost. I'll have to use my viral load from the prior year as my baseline count, which was about 146,000.
I came home with a huge box of medicine, bigger than a shoe box, with the Victrelis in. I start taking it on Friday...
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