On Thursday I called the nurse at the hospital to see if my viral load results were back. I knew it was much too soon - they take 2 to 4 weeks and I was calling after 4 working days - but I couldn't resist. They weren't ready, but he did confirm that the lab has the samples.
I'm finding it a struggle to muster the motivation to keep going. I don't tend to put my stickers showing I've taken my drugs doses in my diary straight away, but do them all together at the end of the day. I don't floss every single night like I used to, and my gums are getting sore again. Those are just two little examples. The regime is getting wearing. Getting the results will give me a boost, I think, if they are good.
It's been 17 months since I gave up smoking, but lately I've started to dream about smoking! It's very strange, as I haven't missed it at all, not after the first few weeks. I've got that craving feeling, that there's something I need to feel better. I suspect it's oxygen I'm missing, from the anaemia.
Yesterday was another low day. I got up late, about 10.30am. Then after spending the morning on the computer looking up properties to buy in Spain (my latest hairbrained idea) I went back to bed at about 1pm. I felt so weary, leaden, like I just wanted to be and not think. But, it didn't help. It's Mum's birthday on Tuesday so I should have been out buying her a present. The Ocado man brought the food delivery for the week, and I just put the stuff which would spoil away and left the rest in bags in the hall. I didn't wash up, didn't do a wash. And it was a beautiful day outside.
And then my honey called me and said did I want to meet and sit in the sun for half an hour on his way home from work. So we went and sat on a bench by the fountains and watched the world go by. He'd bought me a cake-sicle, a pretty sticky treat. And we chatted about nothing serious and laughed, and I was better. I feel profoundly grateful that he knows just how to cheer me up, and that I have his love.
Showing posts with label Victrelis. Show all posts
Showing posts with label Victrelis. Show all posts
Saturday, 1 June 2013
Monday, 27 May 2013
34. 26 May 2013 - Swimming
Today I bought a 6 month pass for the swimming pool round the corner. It's the cheapest membership option, and you have to be a member. It feels a bit of a gamble to spend £150 on a swimming pass, as I haven't found a way to prevent the chlorine from irritating the little bit of rash I have, other than to wait a couple of weeks between swim sessions, and I don't want to risk aggravating it.
Swimming at a relaxed pace for half an hour feels so good though. It eases all my aches and pains out, and my muscles feel relaxed and heavy. Afterwards, food tastes really good too, which I don't feel often at the moment.
I tried taping over the rash using Nexcare absolute waterproof tape to keep it dry. The pharmacist thought it might work. I don't know whether it kept the rash dry, or whether it was the sticking agent, but it still made the rash worse. Next time I will just coat myself in Aveeno before I go in.
Swimming at a relaxed pace for half an hour feels so good though. It eases all my aches and pains out, and my muscles feel relaxed and heavy. Afterwards, food tastes really good too, which I don't feel often at the moment.
I tried taping over the rash using Nexcare absolute waterproof tape to keep it dry. The pharmacist thought it might work. I don't know whether it kept the rash dry, or whether it was the sticking agent, but it still made the rash worse. Next time I will just coat myself in Aveeno before I go in.
Friday, 24 May 2013
33. 24 May 2013 - The End of Week 12
I went in for my week 12 viral load blood test today. The futility rules for Boceprevir state that I need to have a viral load of less than 100 to continue on treatment. If my viral load is above 100 then I have most likely developed a variant of the virus that is resistant to Boceprevir, so there is no point in continuing. Though saying that, one of the people on the forum who is based in California had a viral load of over 1000 at week 12 and they are continuing his treatment. I think that's because his viral load has kept coming down, (he started from a very high level), so they he is just slow in responding, rather than that it isn't working.
Today I am a quarter of the way through treatment! (Or nearly finished, if treatment isn't working.) I am trying to look on it as good news either way. Either treatment is over (yay!) or it's working (yay!).
Friday is still gym day. At the start of treatment it was taking me about 10 minutes to row 2 kilometers. Today it took 11 minutes and 20 seconds. I feel burning in my muscles on fewer reps. But so far I can still do almost as much - 18 reps rather than 20. It takes me longer and longer to warm up to, to get the blood moving round my body. Once I have done though, when I'm warm and have broken a sweat, and my pulse is above 120, I am suddenly full of energy and go. After the gym I felt tired and well. Since I'm tired all the time, it's good to feel tired and well.
Today I am a quarter of the way through treatment! (Or nearly finished, if treatment isn't working.) I am trying to look on it as good news either way. Either treatment is over (yay!) or it's working (yay!).
Friday is still gym day. At the start of treatment it was taking me about 10 minutes to row 2 kilometers. Today it took 11 minutes and 20 seconds. I feel burning in my muscles on fewer reps. But so far I can still do almost as much - 18 reps rather than 20. It takes me longer and longer to warm up to, to get the blood moving round my body. Once I have done though, when I'm warm and have broken a sweat, and my pulse is above 120, I am suddenly full of energy and go. After the gym I felt tired and well. Since I'm tired all the time, it's good to feel tired and well.
Wednesday, 22 May 2013
32. 21 May 2013 - Appointment at the hospital
My blood test results were all good news. My thyroid is still holding up ok, my neutrophils are up to 6.3 (towards the top of normal), and my platelets, though still falling, are falling slowly. I am anaemic, but only very slightly - normal for a woman is 150 - 120, and I scored 118.
As my neutrophils are quite high I'll be taking a couple of weeks break from the Lenograstim. I'm not sure about this, as on the forum, people found that for 3 days after injecting G-CSF their neutrophils were high; i.e. that it worked immediately; but that 3 days later after all the new white blood cells had died (they have a three day lifespan), their neutrophil count would be pretty much back to where it was. My nurse insists that Lenograstim works by stimulating bone marrow stem cell production and works over a couple of week timeframe. So, I'm not taking any for the next couple of weeks, and then will have another blood test to see how they are holding up.
The nurse prescribed me some sunblock and a 500ml bottle of Aveeno lotion, to save me the full cost.
I've put on about 4kgs/9lbs since I started treatment. It's all the snacking. I've stopped having treats with my Boceprevir, and have half an Oatibix with some milk - about 50 calories. I'm still in my healthy weight band, and the extra fat gives more space for the injections.
We chatted through how i'm doing, and a bit about how I'm feeling. I told the nurse that I'm finding depression the main challenge, but down-played it a bit. I'm already on 40mg of Citalopram, and I don't really want to go up to 60mg, and I think that would have been his suggestion.
I feel boring, as I don't do much except what is necessary. I am not engaged in anything apart from treatment. I can hardly string a sentence together, except, would you like a cup of tea. I fear that my boyfriend is going to get bored with me and fall out of love with me, that he will forget that this isn't what I'm really like, before I recover. But, although that is difficult, and sad, and how I feel, I know it's probably paranoia - so what's the point in asking for help with it. "I keep having these stupid thoughts...." How can the nurse help me with that? The greatest battle is in the mind. I feel like I should be learning something profound about life from this, but my brain is too dull.
Week 12 blood tests on Friday. Eek!
As my neutrophils are quite high I'll be taking a couple of weeks break from the Lenograstim. I'm not sure about this, as on the forum, people found that for 3 days after injecting G-CSF their neutrophils were high; i.e. that it worked immediately; but that 3 days later after all the new white blood cells had died (they have a three day lifespan), their neutrophil count would be pretty much back to where it was. My nurse insists that Lenograstim works by stimulating bone marrow stem cell production and works over a couple of week timeframe. So, I'm not taking any for the next couple of weeks, and then will have another blood test to see how they are holding up.
The nurse prescribed me some sunblock and a 500ml bottle of Aveeno lotion, to save me the full cost.
I've put on about 4kgs/9lbs since I started treatment. It's all the snacking. I've stopped having treats with my Boceprevir, and have half an Oatibix with some milk - about 50 calories. I'm still in my healthy weight band, and the extra fat gives more space for the injections.
We chatted through how i'm doing, and a bit about how I'm feeling. I told the nurse that I'm finding depression the main challenge, but down-played it a bit. I'm already on 40mg of Citalopram, and I don't really want to go up to 60mg, and I think that would have been his suggestion.
I feel boring, as I don't do much except what is necessary. I am not engaged in anything apart from treatment. I can hardly string a sentence together, except, would you like a cup of tea. I fear that my boyfriend is going to get bored with me and fall out of love with me, that he will forget that this isn't what I'm really like, before I recover. But, although that is difficult, and sad, and how I feel, I know it's probably paranoia - so what's the point in asking for help with it. "I keep having these stupid thoughts...." How can the nurse help me with that? The greatest battle is in the mind. I feel like I should be learning something profound about life from this, but my brain is too dull.
Week 12 blood tests on Friday. Eek!
Tuesday, 21 May 2013
31. 20 May 2013 - a horrid, horrid feeling...
Last night, when we got back from the weekend away for the wedding I realised that I was a day late replying to another wedding invitation, so I rushed to email "yes please!".
At about 2.30 this morning, I woke with the realisation that I had started my email "Dear J and Zoe", but that the bride's name was Zebe. I'm friends with the groom, and have not met the bride to speak to, but still!
I tried to think of a way to make it ok. That maybe if I explained about the treatment, but it's so intangible. I can't prove it's the treatment making me stupid, and not that I just don't care whether or not I get the bride's name right. Oh horrors.
So, today I sat down to write my grovelling email. But just before I did thought I'd double check... The bride's name is Zoe! Sometime's its so good to discover there was nothing wrong, except you are paranoid.
At about 2.30 this morning, I woke with the realisation that I had started my email "Dear J and Zoe", but that the bride's name was Zebe. I'm friends with the groom, and have not met the bride to speak to, but still!
I tried to think of a way to make it ok. That maybe if I explained about the treatment, but it's so intangible. I can't prove it's the treatment making me stupid, and not that I just don't care whether or not I get the bride's name right. Oh horrors.
So, today I sat down to write my grovelling email. But just before I did thought I'd double check... The bride's name is Zoe! Sometime's its so good to discover there was nothing wrong, except you are paranoid.
Monday, 20 May 2013
30. 19 May 2013 - 3 invalids
Sunday, I remember as blissful. I slept late. Mum brought Granny over. Us three invalids, Dad, Granny and I, sat in the garden chatting, watching the birds and looking at the flowers. Then lunch, and a very short walk, followed by cake.
It was only intermittently sunny, and not all that hot. I had a long sleeved t-shirt on and jeans and a warm cardigan. I burnt a bit on my neck though, oops, and it is itchy and looks like it might develop into rash. I had meant to get some sunblock...
It was only intermittently sunny, and not all that hot. I had a long sleeved t-shirt on and jeans and a warm cardigan. I burnt a bit on my neck though, oops, and it is itchy and looks like it might develop into rash. I had meant to get some sunblock...
Sunday, 19 May 2013
29. 18 May 2013 - The wedding
L & J's wedding was on J's farm, which is a couple of miles from Mum and Dad's, where I was staying. J is a friend from school and part of the group of friends I hung around with for years in London, so the people at the wedding were some of my favourite people.
It was such a joy to be there and watch their eyes as they made their vows to each other. So precious. I felt full up with happiness, my heart bursting with it. And then all day, everywhere I looked there was someone I wanted to hug and catch up with and talk to. I talked and laughed until I was croaky.
It felt so right us being together. It's been years really, but felt like no time at all, like bumping into them was the normal way of things. The posse has dispersed as people have moved out of London to have families, or for an easier way of life (me). It was a bit awkward introducing A. to everyone, because brain fog struck and hid the names from me, not so I couldn't find them, but so I was not fluent. I called Leah Leanne, I had to work round to Steve so I had time to find his name. People who are dear to me and I've known for years. Brain betrayal.
I kept it as low key and stress free as I could. I wore a dress that I'd already got; and, when I was ironing it and found that it had stains on it, I didn't fret, I managed to convince myself that no-one would notice, and I was going and that was the main thing. I was too tired to be irrational - bonus!
I hadn't said to L&J that I'm on the treatment, as I didn't want to make a fuss, but I did say when I went, as there was going to be a bonfire and camping, so I had to give a reason for sloping off at half nine. Good eggs that they are it was all, all, good.
It was such a joy to be there and watch their eyes as they made their vows to each other. So precious. I felt full up with happiness, my heart bursting with it. And then all day, everywhere I looked there was someone I wanted to hug and catch up with and talk to. I talked and laughed until I was croaky.
It felt so right us being together. It's been years really, but felt like no time at all, like bumping into them was the normal way of things. The posse has dispersed as people have moved out of London to have families, or for an easier way of life (me). It was a bit awkward introducing A. to everyone, because brain fog struck and hid the names from me, not so I couldn't find them, but so I was not fluent. I called Leah Leanne, I had to work round to Steve so I had time to find his name. People who are dear to me and I've known for years. Brain betrayal.
I kept it as low key and stress free as I could. I wore a dress that I'd already got; and, when I was ironing it and found that it had stains on it, I didn't fret, I managed to convince myself that no-one would notice, and I was going and that was the main thing. I was too tired to be irrational - bonus!
I hadn't said to L&J that I'm on the treatment, as I didn't want to make a fuss, but I did say when I went, as there was going to be a bonfire and camping, so I had to give a reason for sloping off at half nine. Good eggs that they are it was all, all, good.
Saturday, 18 May 2013
28. 17 May 2013 (2) A long drive
We didn't set off from Bristol until 7.20pm, and it was 10pm by the time I arrived at Mum and Dad's.
It was my fault we left so late, as I did the classic thing of telling my boyfriend the opposite of what I meant. I meant, I'm exhausted and stressed, please would you help me get us on the road as soon as possible. What I said was, "I've just got back from the gym, and still need to shower and pack, so there's no mad rush, so have whatever you want for dinner honey." A. and I generally have fajitas on a Friday, and it's one of his favourite meals, so that's what he cooked and it takes a while.
Driving was a strange experience. I simultaneously felt free, light and in control; and exhausted, like I was keeping going by force of concentration and my grip on the steering wheel. The tiredness of treatment is not like normal tiredness. It's similar: I want to lie down and go to sleep and the sleep makes me rested; but the more I do the less tired I am and the brighter and more awake I feel.
Keeping going when I wanted to stop, keeping driving, made me feverish, croaky, bunged up, deaf, and generally flu-y, but less depressed and demotivated. I got there! I did it. And really there were only a couple of moments when I noticed my driving was a bit off: pulling away from a roundabout I took an angle closer to the curb than I would normally; and every now and then I couldn't remember how far along the (very familiar) route I was.
Mum and Dad welcomed me in and we were up chatting until 11.30pm. Dad's been ill recently, so we were comparing notes and pills. I was so pleased to be there, and not to have to miss out on it because of the treatment.
It was my fault we left so late, as I did the classic thing of telling my boyfriend the opposite of what I meant. I meant, I'm exhausted and stressed, please would you help me get us on the road as soon as possible. What I said was, "I've just got back from the gym, and still need to shower and pack, so there's no mad rush, so have whatever you want for dinner honey." A. and I generally have fajitas on a Friday, and it's one of his favourite meals, so that's what he cooked and it takes a while.
Driving was a strange experience. I simultaneously felt free, light and in control; and exhausted, like I was keeping going by force of concentration and my grip on the steering wheel. The tiredness of treatment is not like normal tiredness. It's similar: I want to lie down and go to sleep and the sleep makes me rested; but the more I do the less tired I am and the brighter and more awake I feel.
Keeping going when I wanted to stop, keeping driving, made me feverish, croaky, bunged up, deaf, and generally flu-y, but less depressed and demotivated. I got there! I did it. And really there were only a couple of moments when I noticed my driving was a bit off: pulling away from a roundabout I took an angle closer to the curb than I would normally; and every now and then I couldn't remember how far along the (very familiar) route I was.
Mum and Dad welcomed me in and we were up chatting until 11.30pm. Dad's been ill recently, so we were comparing notes and pills. I was so pleased to be there, and not to have to miss out on it because of the treatment.
Friday, 17 May 2013
27. 17 May 2013 - Feeling better again
Fortunately, the diarrhoea cleared up in a couple of days. The nurse told me that I could take Loperamide (Imodium), if I needed too. I've bought some just in case, but am currently fine again.
I've also got some Diphenhydramine. I thought an antihistamine might help with my constantly runny nose, and Diphenhydramine makes you dozy - it's sold as Nytol, so I chose that one to help me sleep too. I took some last night and I'd say that my skin felt more comfortable, less itchy, and my sinuses clearer. I also slept well, though I'm having difficulty waking up this morning.
A busy day today. I'm anxious about this weekend, particularly the drive back to Mum and Dad's. Sometimes I feel like it's a stupid risk to take, that I'm not up to the drive and might have an accident; and sometimes I think that I'll be absolutely fine, and that it's essential that I don't give in to the "I can't cope, I can't do it, it's too much" feeling, as then depression will have me. Whereas, coping, will show me I can do it and give me confidence.
It's the end of week 11 today! Only another 37 weeks to go, if all goes well. 23% of the way there...
I've also got some Diphenhydramine. I thought an antihistamine might help with my constantly runny nose, and Diphenhydramine makes you dozy - it's sold as Nytol, so I chose that one to help me sleep too. I took some last night and I'd say that my skin felt more comfortable, less itchy, and my sinuses clearer. I also slept well, though I'm having difficulty waking up this morning.
A busy day today. I'm anxious about this weekend, particularly the drive back to Mum and Dad's. Sometimes I feel like it's a stupid risk to take, that I'm not up to the drive and might have an accident; and sometimes I think that I'll be absolutely fine, and that it's essential that I don't give in to the "I can't cope, I can't do it, it's too much" feeling, as then depression will have me. Whereas, coping, will show me I can do it and give me confidence.
It's the end of week 11 today! Only another 37 weeks to go, if all goes well. 23% of the way there...
Tuesday, 14 May 2013
26. 14 May 2013 - An unpleasant development
On Sunday night I broke my rules, and had fruit with my Boceprevir. I stewed some apples with berries for pudding, and took my pills with it. Mistake! Ever since I have had a delicate stomach, and, blurgh - diarrhoea.
There's something undermining about having to worry about making it to the loo in time at 36 years of age. I'm going to a wedding on Saturday. I really hope I don't have to make a run for it in the middle of the ceremony. Hopefully, the nurse will have got back to me with a remedy before then.
There's something undermining about having to worry about making it to the loo in time at 36 years of age. I'm going to a wedding on Saturday. I really hope I don't have to make a run for it in the middle of the ceremony. Hopefully, the nurse will have got back to me with a remedy before then.
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.
Tuesday, 7 May 2013
22. 7 May 2013 - Week 8 virus load results - so/so
Here are my week 8 VL results: 118 IU/ml.
I am dissappointed. More than I should be really. I was so hoping for undetectable.
I feel like I can do this, so long as it is working, but if it's not...
I am fed up of getting up in the night to take medication. I'm fed up of being tired all the time, and my ears being blocked, and my nose running. I find it hard to believe that I could be doing this for another 38 weeks, and it still not work.
And my boyfriend is really struggling with his mood at the moment and is hardly speaking. I feel insecure, on edge, and pissed off. Woohoo!
On the upside, the Lenograstim injection was fine, once I got my head round the IKEA like self-assembly instructions for the injection.
I'm going to have a full blood count done tomorrow, and if my neutrophils have recovered enough will be back up to 180mcg of interferon. Might as well throw everything at it.
I am dissappointed. More than I should be really. I was so hoping for undetectable.
I feel like I can do this, so long as it is working, but if it's not...
I am fed up of getting up in the night to take medication. I'm fed up of being tired all the time, and my ears being blocked, and my nose running. I find it hard to believe that I could be doing this for another 38 weeks, and it still not work.
And my boyfriend is really struggling with his mood at the moment and is hardly speaking. I feel insecure, on edge, and pissed off. Woohoo!
On the upside, the Lenograstim injection was fine, once I got my head round the IKEA like self-assembly instructions for the injection.
I'm going to have a full blood count done tomorrow, and if my neutrophils have recovered enough will be back up to 180mcg of interferon. Might as well throw everything at it.
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...
Saturday, 30 March 2013
17. 30 March 2013 - Very mild side effects
The side effects from the Victrellis so far are very mild:
- some mild nausea that passes quickly, a bit of indigestion-like discomfort;
- a slight taste in my mouth;
- slightly increased side effects from the interferon - tiredness and fever.
I would say that I feel a bit better in some ways; less agitated, warmer - that my circulation has improved.
I have taken every dose so far with a glass of milk and one of the breakfast biscuits.
I feel very lucky and relieved to be getting away with it so lightly so far.
Off to the shop now to buy ingredients for making more biscuits...
- some mild nausea that passes quickly, a bit of indigestion-like discomfort;
- a slight taste in my mouth;
- slightly increased side effects from the interferon - tiredness and fever.
I would say that I feel a bit better in some ways; less agitated, warmer - that my circulation has improved.
I have taken every dose so far with a glass of milk and one of the breakfast biscuits.
I feel very lucky and relieved to be getting away with it so lightly so far.
Off to the shop now to buy ingredients for making more biscuits...
Friday, 29 March 2013
Friday, 15 March 2013
13. 15 March 2013 - 2 weeks done & telling the team
One advantage of being a bit older doing the treatment this time is that it is flying by, along with the rest of time. A bit soon to be saying that kind of thing. But later this evening I will inject the interferon for the third time.
It's been a good week. I'd say that although I am more tired that the week before, apart from that I feel better this week: less feverish, less blue, I can concentrate better and the rash on my hands is improving.
On Monday I told the team at work about the treatment. I asked the boss to get the team together, as I want them to understand what I'm doing, especially for the days when I don't feel so hot. I told them that I was doing treatment for Hep C, a bit about the drugs, the side effects and what it entails. The Care Manager, who used to be a nurse, had some questions, which I felt was useful by immediately turning it into something that could be discussed. She asked whether it might cover my having another virus. I wonder whether she asked that because her husband is recovering from surgery, and she's concerned about catching a virus from me and taking infecting him? I told her I'd fight off any other viruses better that usual, as that's my understanding.
I thought it was best just to be straightforward about having Hep C. If I act unembarrassed about having it, I think that reduces stigma, whereas if I act ashamed, other people who know less about it than me and who have probably never thought about it before will pick up on my signals and think that the appropriate way to view Hep C is as something to be ashamed of. So, i've also been straightforward in telling the drama group the reason I've stopped going.
Last time I did the treatment I was less open. Some people found out I was doing a medical treatment, but not what for, and they were very worried about me: I assume they thought I had cancer of some kind - I wanted to avoid worrying people unnecessarily too.
Fridays are non-working days in my part-time week, and it's at the end of my treatment week too with the least effects of interferon, so I try to work out quite hard. I did my whole usual work out, cardio and weights. I'm thinking of using my 2 kilometer rowing time as benchmark for how much energy I've got. Today it took me 10 minutes dead, which is about 10 seconds faster than last week and 20 seconds slower than my pre-treatment time. This week the whole work out felt harder though. By doing the same, I'm working harder.
I saw my GP this morning. It was a bit of a non-event as most of the side effects that I've been getting from the citalopram and the treatment have lessened. Still, it was good to check in and let her know what's going on. And they have said they want to monitor my mental state, so I am co-operating.
Then, in the afternoon, it was my second round of blood tests. Again, absolutely no drama, and no wait to go in either. I kept with the newly started tradition of coffee and cake afterwards. Then yoga nidra, put the shopping away, and it's time to make dinner already.
I'm going to try having an isotonic sports drink with my injection this evening, as it's recommended by some people on the forum. It can't hurt.
Thanks for taking the time to read this. Hope all is well with you.
It's been a good week. I'd say that although I am more tired that the week before, apart from that I feel better this week: less feverish, less blue, I can concentrate better and the rash on my hands is improving.
On Monday I told the team at work about the treatment. I asked the boss to get the team together, as I want them to understand what I'm doing, especially for the days when I don't feel so hot. I told them that I was doing treatment for Hep C, a bit about the drugs, the side effects and what it entails. The Care Manager, who used to be a nurse, had some questions, which I felt was useful by immediately turning it into something that could be discussed. She asked whether it might cover my having another virus. I wonder whether she asked that because her husband is recovering from surgery, and she's concerned about catching a virus from me and taking infecting him? I told her I'd fight off any other viruses better that usual, as that's my understanding.
I thought it was best just to be straightforward about having Hep C. If I act unembarrassed about having it, I think that reduces stigma, whereas if I act ashamed, other people who know less about it than me and who have probably never thought about it before will pick up on my signals and think that the appropriate way to view Hep C is as something to be ashamed of. So, i've also been straightforward in telling the drama group the reason I've stopped going.
Last time I did the treatment I was less open. Some people found out I was doing a medical treatment, but not what for, and they were very worried about me: I assume they thought I had cancer of some kind - I wanted to avoid worrying people unnecessarily too.
Fridays are non-working days in my part-time week, and it's at the end of my treatment week too with the least effects of interferon, so I try to work out quite hard. I did my whole usual work out, cardio and weights. I'm thinking of using my 2 kilometer rowing time as benchmark for how much energy I've got. Today it took me 10 minutes dead, which is about 10 seconds faster than last week and 20 seconds slower than my pre-treatment time. This week the whole work out felt harder though. By doing the same, I'm working harder.
I saw my GP this morning. It was a bit of a non-event as most of the side effects that I've been getting from the citalopram and the treatment have lessened. Still, it was good to check in and let her know what's going on. And they have said they want to monitor my mental state, so I am co-operating.
Then, in the afternoon, it was my second round of blood tests. Again, absolutely no drama, and no wait to go in either. I kept with the newly started tradition of coffee and cake afterwards. Then yoga nidra, put the shopping away, and it's time to make dinner already.
I'm going to try having an isotonic sports drink with my injection this evening, as it's recommended by some people on the forum. It can't hurt.
Thanks for taking the time to read this. Hope all is well with you.
Friday, 8 March 2013
10. 8 March 2013 - Week 1 side effects
So that's the first week of treatment over. One week done, fortyseven to go. I'm still in the lead in phase, so just on interferon and ribavirin so far.
Side effects so far:
- generally itchy and sensitive skin, tickly face, (mild);
- rash on my hands and swollen knuckles, (mild);
- low mood and confidence, (mild to moderate on some days);
- feeling feverish and sweating more than usual, especially at night and in the gym, (again mild);
- tiredness, especially on working days when I'm out and about. By early afternoon I'm ready to go home, but have managed to fulfil my hours this mini-week, just two days nine to five., (mild so far);
- all my usual aches and pains are a bit worse, e.g. my aches in my hip and feet (poor old lady), (mild);
- difficulty concentrating! e.g. on Thursday I dated a contract 2011. Oops., (mild to moderate);
- busy brain and difficulty sleeping, (mild);
- constantly wanting to eat (I think that's the anti-depressants rather than the Hep C medication).
So, not too bad really.
The adult theatre group with the Old Vic was too much for me, sadly, and I've pulled out of the performance which is on the 28th of March. I can't imagine going on stage at the moment. I'd be frightened, and it wouldn't be fun, so I don't see the point in putting the extra pressure on myself and risk letting the group down. I am really sad to have given it up though. It was so much fun, we laugh a lot, and I will miss all my buddies in the group. Still, I am thankful that I feel as well as I do.
Aveeno handcream is excellent. It's a medicated handcream, designed for eczema etc. It relieves the itching on my hands as soon as I put it on.
Going to the gym this morning has made me feel miles better. I was able to do almost as much as usual, say 80% effort. My mood is hugely improved. The more I did the better I felt.
Now time for a snooze...!
Side effects so far:
- generally itchy and sensitive skin, tickly face, (mild);
- rash on my hands and swollen knuckles, (mild);
- low mood and confidence, (mild to moderate on some days);
- feeling feverish and sweating more than usual, especially at night and in the gym, (again mild);
- tiredness, especially on working days when I'm out and about. By early afternoon I'm ready to go home, but have managed to fulfil my hours this mini-week, just two days nine to five., (mild so far);
- all my usual aches and pains are a bit worse, e.g. my aches in my hip and feet (poor old lady), (mild);
- difficulty concentrating! e.g. on Thursday I dated a contract 2011. Oops., (mild to moderate);
- busy brain and difficulty sleeping, (mild);
- constantly wanting to eat (I think that's the anti-depressants rather than the Hep C medication).
So, not too bad really.
The adult theatre group with the Old Vic was too much for me, sadly, and I've pulled out of the performance which is on the 28th of March. I can't imagine going on stage at the moment. I'd be frightened, and it wouldn't be fun, so I don't see the point in putting the extra pressure on myself and risk letting the group down. I am really sad to have given it up though. It was so much fun, we laugh a lot, and I will miss all my buddies in the group. Still, I am thankful that I feel as well as I do.
Aveeno handcream is excellent. It's a medicated handcream, designed for eczema etc. It relieves the itching on my hands as soon as I put it on.
Going to the gym this morning has made me feel miles better. I was able to do almost as much as usual, say 80% effort. My mood is hugely improved. The more I did the better I felt.
Now time for a snooze...!
Sunday, 3 March 2013
9. 3 March 2013 - Day 3, Feeling good
I slept straight through last night with no problems, so I'll keep taking the second dose of ribavirin in the late afternoon rather than the evening.
Yesterday I managed to do all the usual cleaning, if a bit more slowly than usual.
I had a warm bath, rather than my usual lobster boiler, and was good and moisturised afterwards as promised.
I don't even feel like I need any paracetamol this morning.
Off to meet my brother for a day in town!
Yesterday I managed to do all the usual cleaning, if a bit more slowly than usual.
I had a warm bath, rather than my usual lobster boiler, and was good and moisturised afterwards as promised.
I don't even feel like I need any paracetamol this morning.
Off to meet my brother for a day in town!
Saturday, 2 March 2013
8. 2 March 2013 - Fine so far
I am really pleased with how well I've felt since I took the first doses. I know it's very early yet.
The injection pen for the interferon is great! It didn't hurt at all.
I have been a bit achey. All the usual aches and pains - in my hip, in my feet - are amplified. I took a couple of ibuprofen last night as it was stopping me getting to sleep, but it's not a problem.
I woke in the night twice, and couldn't get back to sleep for a couple of hours the second time. My relaxation CDs didn't send me off as they usually do. My brain was too busy and I was hot. However, thinking about my perfect bathroom layout seemed to do the job, so I'm not that tired today as I could sleep in, it being a Saturday.
I think I will try and take the ribavirin earlier, about 4pm rather than with dinner at 7pm, as I've heard that can help with sleeping through.
Saturday mornings are Tai Chi. I went this morning as usual, and enjoyed it just as usual.
I've got enough energy to do the cleaning, sadly.
The injection pen for the interferon is great! It didn't hurt at all.
I have been a bit achey. All the usual aches and pains - in my hip, in my feet - are amplified. I took a couple of ibuprofen last night as it was stopping me getting to sleep, but it's not a problem.
I woke in the night twice, and couldn't get back to sleep for a couple of hours the second time. My relaxation CDs didn't send me off as they usually do. My brain was too busy and I was hot. However, thinking about my perfect bathroom layout seemed to do the job, so I'm not that tired today as I could sleep in, it being a Saturday.
I think I will try and take the ribavirin earlier, about 4pm rather than with dinner at 7pm, as I've heard that can help with sleeping through.
Saturday mornings are Tai Chi. I went this morning as usual, and enjoyed it just as usual.
I've got enough energy to do the cleaning, sadly.
Friday, 1 March 2013
7. 1 March 2013 - First day of treatment
Today has been a bit of a non-event, after the long build up. It's 6pm and I'm yet to take any medicine.
My appointment with the nurse was at 10.30, but I didn't see him until 11.45, and didn't get out of the appointment until 12.30.
The nurse was very helpful, knowledgeable and professional, but seemed down-beat. Generally I got the impression that all is not well at the hospital, and staff are demotivated, that maybe the leadership isn't very good.
The nurse threw me completely at the end of the appointment by - after we'd gone through all the medication, using the injection pen, managing side effects, the lot - bringing up the prospect of not doing the triple therapy and going on a clinical trial starting in May instead. The consultant had written a note on my file saying that I'd probably qualify and the new drug might give me a better chance of clearing the virus. The nurse also thought the trial might be a shorter treatment. So he called the clinical research team and they weren't about, and then the clinic head, and she wasn't available, so I left the appointment not knowing whether I was going to do the treatment or not. He said to carry on as if I was, and he'd call me in the afternoon with more information on the trial.
So it was off to the pharmacy to collect my prescription of four weeks Ribavirin and Interferon; and then for blood tests.
The blood tests were much quicker than usual. Sometimes my blood is reluctant to go into the vials, but I'd been to the gym in the morning, and took water with me and kept hydrated, and the blood tests were no trouble at all. I didn't feel dizzy or faint afterwards either, so I'll try that again. I did go for coffee and cake after the appointment anyway though, as I had promised myself, and it's important to keep promises (any excuse for cake).
The nurse called whilst I was eating said cake, and told me the clinical trial would start in August, not May, and I might not get on it, and it might be 48 weeks treatment length anyway, so I've decided to go ahead with the current triple therapy. I've decided to assume it's going to work, with the vitamin D3 supplements as well. I'll take my first 2 Ribavirin with dinner and have my first injection this evening. I'll let you know how it goes tomorrow.
I've bought coloured stickers, to stick in my diary to keep track of every drugs dose I take. The pharmacy won't give out the weekday drug trays for Hep C treatment. Apparently the level of cognitive impairment isn't severe enough.
I've been feeling a bit feverish the past few days, like I felt when I first got Hep C. I've been wondering whether it's because of the vitamin D3, that my immune system has kicked up a gear already in fighting the virus.
Promises I have made to myself, to stick to throughout the treatment:
- I will always moisturise my skin after every bath and shower;
- I will drink at least 2.2 litres of water every day;
- I'm going to try and feel as well as I can. I'll take paracetamol, and any other palliative medicines to manage the side effects and make it as easy as possible. (Last time I was guilty of not tackling the side-effects as I felt that feeling worse meant that the treatment was working better.)
- I will body brush once a week (may help remove toxins?)
My appointment with the nurse was at 10.30, but I didn't see him until 11.45, and didn't get out of the appointment until 12.30.
The nurse was very helpful, knowledgeable and professional, but seemed down-beat. Generally I got the impression that all is not well at the hospital, and staff are demotivated, that maybe the leadership isn't very good.
Information the nurse confirmed:
- I'll be doing 48 weeks treatment, as a prior non-responder.
- My chances of clearing the virus are about 30%.
- If the interferon freezes in the fridge I need to get it replaced (our fridge is temperamental).
- I'll be going back for more blood tests in two weeks, then for blood tests and the next clinic in three-and-a-half weeks.
- I can take up to 2000mg of paracetamol a day safely.
- They have access to a psychiatric team, if I get really depressed.
- I am likely to get brain fog, cognitive impairment, because of the interferon, which he thinks will probably effect my work.
- They don't give epoetin/procrit for managing anaemia, except as a short term rescue to allow continuation of the treatment. Generally they reduce ribavirin as a first step, because the epoetin is expensive.
- I have to be very assertive about checking that any other medicine prescribed to me whilst I'm on the treatment is not contraindicated. E.g. some antibiotics could cause serious problems when combined with Boceprevir, and not all GPs are familiar with the new drugs.
The nurse referred me to www.drugs.com to check any interactions. I checked the contraceptive I take for endometritis, and it is contraindicated, as it might be reduced in concentration and effectiveness and might not be a reliable contraceptive. I don't think that will be an issue for the endometritis though? I'll ask my GP. I know to use two other methods of contraception to prevent pregnancy on the treatment.
The nurse threw me completely at the end of the appointment by - after we'd gone through all the medication, using the injection pen, managing side effects, the lot - bringing up the prospect of not doing the triple therapy and going on a clinical trial starting in May instead. The consultant had written a note on my file saying that I'd probably qualify and the new drug might give me a better chance of clearing the virus. The nurse also thought the trial might be a shorter treatment. So he called the clinical research team and they weren't about, and then the clinic head, and she wasn't available, so I left the appointment not knowing whether I was going to do the treatment or not. He said to carry on as if I was, and he'd call me in the afternoon with more information on the trial.
So it was off to the pharmacy to collect my prescription of four weeks Ribavirin and Interferon; and then for blood tests.
The blood tests were much quicker than usual. Sometimes my blood is reluctant to go into the vials, but I'd been to the gym in the morning, and took water with me and kept hydrated, and the blood tests were no trouble at all. I didn't feel dizzy or faint afterwards either, so I'll try that again. I did go for coffee and cake after the appointment anyway though, as I had promised myself, and it's important to keep promises (any excuse for cake).
The nurse called whilst I was eating said cake, and told me the clinical trial would start in August, not May, and I might not get on it, and it might be 48 weeks treatment length anyway, so I've decided to go ahead with the current triple therapy. I've decided to assume it's going to work, with the vitamin D3 supplements as well. I'll take my first 2 Ribavirin with dinner and have my first injection this evening. I'll let you know how it goes tomorrow.
I've bought coloured stickers, to stick in my diary to keep track of every drugs dose I take. The pharmacy won't give out the weekday drug trays for Hep C treatment. Apparently the level of cognitive impairment isn't severe enough.
I've been feeling a bit feverish the past few days, like I felt when I first got Hep C. I've been wondering whether it's because of the vitamin D3, that my immune system has kicked up a gear already in fighting the virus.
Promises I have made to myself, to stick to throughout the treatment:
- I will always moisturise my skin after every bath and shower;
- I will drink at least 2.2 litres of water every day;
- I'm going to try and feel as well as I can. I'll take paracetamol, and any other palliative medicines to manage the side effects and make it as easy as possible. (Last time I was guilty of not tackling the side-effects as I felt that feeling worse meant that the treatment was working better.)
- I will body brush once a week (may help remove toxins?)
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