Well yesterday saw me in the office of my consultant discussing the game plan for the treatment ahead.
I am to start my rituximab infusions mid to end of January 2015. The drug is designed to completely wipe out my immune system so as such, it is important that between now and then that I do not harbour any infections. With that in mind i need to chase the dentist to get the tooth extracted to remove the abscess and the hospital have taken a full panel of bloods, testing includes the basic LFT and FBC but also screening for infections such as HIV, Diptheria etc
The Rituximab will pretty much wipe me out so they will be running intravenous methylprednisolone steroid in at the same time to give me a boost and keep me on my feet. I will have an infusion of Rituximab once a week for four to six weeks depending on results. Then i will have a maintenance top up once every six months.
Along side that, i am to have a "bone booster" injection every 4 - 6 months to reinforce my bones as prolonged exposure to steroids can weaken the bones and it is thought maybe this is why i get joint pain now in my hips, back and knees
They have told me that I have the possibility of a further round of chemotherapy using cyclophosphamide, but they are keeping that back incase the rituximab doesnt work
So, with christmas a week away, i am going to enjoy myself and then get back to the grind with the illness, but nothing is going to get in my way between now and then
Thursday, 18 December 2014
Wednesday, 10 December 2014
Bloods et al
Well, today I wandered over to the Dental surgery in Rhayader to see the main man about my abscessed tooth.
After much "umming and ahhing" it was decided that he couldn't take the tooth out, although that is what was needed to deal with it. So, these are the facts:-
The previous dentist I saw in Llandidloes ( aka "The Butcher") had decided to crown a tooth that had been snapped off at the gum for some time now. He anchored it well in with a large post and fitted what appeared to be a satisfactory crown. However, things were not all hunky dory in the old Gob-Hole
I have had an abscess three times now on this tooth. It not only effects the crowned tooth, but has also made the adjoining wisdom tooth sore and loose. To add insult to injury, today's xray of the tooth showed that the abscess had spread through the jaw to the front gum two teeth down and to the back of the jar by the knackered wisdom tooth. The only answer would be to remove it - however, with me so close to having chemo now - only a couple of month's away - he wanted to make sure that the tooth and all it's abscessy nastiness were totally removed before I start, so he has referred me to see the hospital in Brecon to ask their dental team to get in there and deal with it properly.
Wisdom teeth are notoriously hard to extract by all accounts and then to take a crown and its anchor out from an infect jawbone too - he didnt want to take any risks and therefore decided to get it done by the experts at the dental hospital.
Then, I wandered back to the GP surgery to get a repeat done on my Liver Function Test (LTF) as the ALT level was high so decided to get a second set done a week after the last to see if the high result is a climbing result or a declining result. Hopefully declining and we can put it to bed, but if its a climbing result then we need to get it looked into with Dr Rees next week when I see him to discuss my treatment plan
Good news, my infected tear duct is just leaking the usual crud now, no blood included now, so good news that it is over, bad news is no more "Stigmata" jokes!
Until my next update - over and out
After much "umming and ahhing" it was decided that he couldn't take the tooth out, although that is what was needed to deal with it. So, these are the facts:-
The previous dentist I saw in Llandidloes ( aka "The Butcher") had decided to crown a tooth that had been snapped off at the gum for some time now. He anchored it well in with a large post and fitted what appeared to be a satisfactory crown. However, things were not all hunky dory in the old Gob-Hole
I have had an abscess three times now on this tooth. It not only effects the crowned tooth, but has also made the adjoining wisdom tooth sore and loose. To add insult to injury, today's xray of the tooth showed that the abscess had spread through the jaw to the front gum two teeth down and to the back of the jar by the knackered wisdom tooth. The only answer would be to remove it - however, with me so close to having chemo now - only a couple of month's away - he wanted to make sure that the tooth and all it's abscessy nastiness were totally removed before I start, so he has referred me to see the hospital in Brecon to ask their dental team to get in there and deal with it properly.
Wisdom teeth are notoriously hard to extract by all accounts and then to take a crown and its anchor out from an infect jawbone too - he didnt want to take any risks and therefore decided to get it done by the experts at the dental hospital.
Then, I wandered back to the GP surgery to get a repeat done on my Liver Function Test (LTF) as the ALT level was high so decided to get a second set done a week after the last to see if the high result is a climbing result or a declining result. Hopefully declining and we can put it to bed, but if its a climbing result then we need to get it looked into with Dr Rees next week when I see him to discuss my treatment plan
Good news, my infected tear duct is just leaking the usual crud now, no blood included now, so good news that it is over, bad news is no more "Stigmata" jokes!
Until my next update - over and out
Monday, 8 December 2014
Test Results - oo crumbs
So, last Thursday went for a set of blood tests, the results are as below:
Urine Analysis
White Blood Cell Count: <10
Red Blood Cell Count <5
Culture No Growth
Blood Count (figures in brackets is the acceptable range)
Total White Cell Count 5.1 (4 - 11)
Haemoglobin Est. 155 (133-180)
Platelet Count 202 (150 - 400)
Red Blood Cell Count 5.46 (4.5 - 6.00)
Haemocrit 0.47 (0.4 - 0.52)
Mean Corpuscular Volume 85 (80 - 100)
Mean Corp. Haemoglobin 28.4 (27 - 33)
Neutrophil Count 3.1 (1.7 - 7.5)
Lymphocyte Count 1.4 (1 - 4.5)
Monocyte Count 0.4 (0.2 - 0.8)
Eosinophil Count 0.2 (0 - 0.4)
Red Blood Cell Distribution Width 16.4% (11 - 14.8) *HIGH*
Sodium 138 (133 -146)
Potassium 4.5 (3.5 - 4.3)
Creatinine 80 (58 - 110)
C Reactive Protein 10 ( <5) *HIGH*
Bilirubin 8 (<21)
Total Protein 72 (60 - 80)
Albumin 44 (35 - 50)
Globulin 28
Alkaline Phosphatase 89 (30 - 130)
ALT Level 42 (<41) *HIGH*
Not too worried about the CRP at 10, it's been up to 18 before now, just indicates that I am fighting an infection, which is logical when you take into account my abscess on my tooth. My ALT level is concerning me as it's just nudging over the acceptable level. Last year it went up to nearly 120, that was just before my liver totaly failed due to the methatrexate they gave me!
Urine Analysis
White Blood Cell Count: <10
Red Blood Cell Count <5
Culture No Growth
Blood Count (figures in brackets is the acceptable range)
Total White Cell Count 5.1 (4 - 11)
Haemoglobin Est. 155 (133-180)
Platelet Count 202 (150 - 400)
Red Blood Cell Count 5.46 (4.5 - 6.00)
Haemocrit 0.47 (0.4 - 0.52)
Mean Corpuscular Volume 85 (80 - 100)
Mean Corp. Haemoglobin 28.4 (27 - 33)
Neutrophil Count 3.1 (1.7 - 7.5)
Lymphocyte Count 1.4 (1 - 4.5)
Monocyte Count 0.4 (0.2 - 0.8)
Eosinophil Count 0.2 (0 - 0.4)
Red Blood Cell Distribution Width 16.4% (11 - 14.8) *HIGH*
Sodium 138 (133 -146)
Potassium 4.5 (3.5 - 4.3)
Creatinine 80 (58 - 110)
C Reactive Protein 10 ( <5) *HIGH*
Bilirubin 8 (<21)
Total Protein 72 (60 - 80)
Albumin 44 (35 - 50)
Globulin 28
Alkaline Phosphatase 89 (30 - 130)
ALT Level 42 (<41) *HIGH*
Not too worried about the CRP at 10, it's been up to 18 before now, just indicates that I am fighting an infection, which is logical when you take into account my abscess on my tooth. My ALT level is concerning me as it's just nudging over the acceptable level. Last year it went up to nearly 120, that was just before my liver totaly failed due to the methatrexate they gave me!
Saturday, 6 December 2014
Oooo Its Christmas
Well, I suppose it must be Christmas. Been to see the Coca Cola truck today with the kids! Had our picture taken by Coca Cola themselves and therefore just waiting for them to email it to me....
So now it must be Christmas as Christmas doesn't start until we see the Coke truck!
Health wise?? well I still ache but have been piling on the co-codamol. Not just for pain in my joints, but also for pain in my jaw. The tooth I asked to be removed 2 years ago, they decided to crown instead. Now, I have a recurring abscess there now and today the gum has ballooned with pus. So not only have I taken the co-codamol, but i have also started on the co-amoxiclav antibiotics. The flucloxacillin just isn't touching it, but then its more a general antibiotic, whereas Co-Amoxiclax (Augmentin) is a specialist antibiotic that targets gram negative bacteria which is just what is lurking in my jaw.
I have also gone all "middle ages" on its ass and lanced it. This sounds medically professional, in truth it means i jabbed a bamboo skewer into it until the pus drained out!
Looking forward to tomorrow when hopefully the pain is lessened
So now it must be Christmas as Christmas doesn't start until we see the Coke truck!
Health wise?? well I still ache but have been piling on the co-codamol. Not just for pain in my joints, but also for pain in my jaw. The tooth I asked to be removed 2 years ago, they decided to crown instead. Now, I have a recurring abscess there now and today the gum has ballooned with pus. So not only have I taken the co-codamol, but i have also started on the co-amoxiclav antibiotics. The flucloxacillin just isn't touching it, but then its more a general antibiotic, whereas Co-Amoxiclax (Augmentin) is a specialist antibiotic that targets gram negative bacteria which is just what is lurking in my jaw.
I have also gone all "middle ages" on its ass and lanced it. This sounds medically professional, in truth it means i jabbed a bamboo skewer into it until the pus drained out!
Looking forward to tomorrow when hopefully the pain is lessened
Thursday, 4 December 2014
Feeling Rough
Well, didn't go to plan!
I didn't tell the kids yesterday as I planned as I spent a lot of yesterday either sleeping or removing gunk from my tear ducts. Yup - still with blood in but not as bad so getting better which is a bonus.
Spent some time with the goats yesterday - Bertie needs his feet trimming so need to work out how to flip a 120kg goat onto its back for a manicure!
Been to the GP today to have bloods taken. Dropped off to vials of urine too for a full work up of my liver and kidneys to ensure that they are in full working order.
Bloods taken were Liver Function Test (LFT), Creatin Reactive Protein (CRP), Full Blood Count (FBC).
Funding for the Rituximab has been applied for, awaiting a decision from the fund holder (Powys NHS)
Spoke to clinic, treat on a weekly basis, 4-5 hour infusion for around four weeks, probably starting around February 2015. So at least I am going to have a decent Christmas
I didn't tell the kids yesterday as I planned as I spent a lot of yesterday either sleeping or removing gunk from my tear ducts. Yup - still with blood in but not as bad so getting better which is a bonus.
Spent some time with the goats yesterday - Bertie needs his feet trimming so need to work out how to flip a 120kg goat onto its back for a manicure!
Been to the GP today to have bloods taken. Dropped off to vials of urine too for a full work up of my liver and kidneys to ensure that they are in full working order.
Bloods taken were Liver Function Test (LFT), Creatin Reactive Protein (CRP), Full Blood Count (FBC).
Funding for the Rituximab has been applied for, awaiting a decision from the fund holder (Powys NHS)
Spoke to clinic, treat on a weekly basis, 4-5 hour infusion for around four weeks, probably starting around February 2015. So at least I am going to have a decent Christmas
Tuesday, 2 December 2014
Big Announcement Tomorrow
Tomorrow will be a big day for me. I received a letter in the post last week to say that my disease, which we thought had been kicked into remission, looks like it is active again. That was a real kick in the privates for me.
I will be announcing it to the kids tomorrow, I have pre-warned the school and the kid's counselor (they have a counselor to help them through my chemotherapy 2 years ago) so they will be on hand on Friday to pick up any fallout that may occur.
I have been told that I can no longer have the drug of choice, cyclophosphamide, as I have had enough of the drug in my lifetime, any more could cause me to develop bladder cancer, something that took my wonderful dad from me, so not a road I want to go down.
Instead, they are using a new drug on me called Rituximab. It is proven in cancer as very effective but its use in vasculitis and in particular GPA is only just been approved by NICE - National Institute of Clinical Excellence. The funding has been applied for and once approved, it is intended that I start it pretty much straight away.
The treatment will be done via an injection, infused over 7 hours on day 1 and again on day 14. Then blood tests will be taken to check its effect on my immune system. The drug is bolstered with steroids and anti-emmetics (anti sickness drugs) and various other things. A very close check will be kept on my renal function as over dose of Rituximab can have an adverse effect on the liver and kidneys, and as I suffered liver failure after the last lot of chemotherapy (thankfully I have regained near perfect renal function) they dont want that to happen again!
Anyways, Diary entry for 2nd December -
Still have abscess behind my tooth on the top right of my mouth, Taking Flucloxacillin 500mg to deal with that, and the infection is going. Pain is being controlled with 2x 500mg co-codamol which includes 30mg of codeine per tablet, and 500mg naproxen - off to happy land we go!
I am still taking the 30mg leflunamide to suppress my immune system, but it doesnt appear to be working otherwise I wouldnt be needing the Rituximab. Supporting the leflunamide is my daily 5mg of prednisolone steroid which i had hoped to get rid off as it piles the weight on me.
With that in mind i have been prescribed Orlistat, a fat reducing pill which lines your stomach making it harder for the fat to be absorbed in an effort to get my weight down as much as possible before i start my treatment.
My throat is feeling like it is narrowing again, with shortness of breathe becoming more common. My joints ache, in particular my knees and hips. My right ribs really hurt at the moment, but I can at least blame that on the horse kicking me rather than my illness. The bruise is something to behold!
Keep draining my eye of gunk from the abscess in there, this time I had blood come out with the gunk, this usually indicates a sinus infection, which i can deal with. The wife wasnt impressed when i ran into the lounge, with bloody tears shouting "look - stigmata"! I thought it was funny and you have to laugh at the illness otherwise you would go mad.
Fatigue - I am soo tired at the moment, another symptom i suppose i should have paid attention to to prepare me for the inevitable.
Right, on with the rest of the day, catch you all laters
I will be announcing it to the kids tomorrow, I have pre-warned the school and the kid's counselor (they have a counselor to help them through my chemotherapy 2 years ago) so they will be on hand on Friday to pick up any fallout that may occur.
I have been told that I can no longer have the drug of choice, cyclophosphamide, as I have had enough of the drug in my lifetime, any more could cause me to develop bladder cancer, something that took my wonderful dad from me, so not a road I want to go down.
Instead, they are using a new drug on me called Rituximab. It is proven in cancer as very effective but its use in vasculitis and in particular GPA is only just been approved by NICE - National Institute of Clinical Excellence. The funding has been applied for and once approved, it is intended that I start it pretty much straight away.
The treatment will be done via an injection, infused over 7 hours on day 1 and again on day 14. Then blood tests will be taken to check its effect on my immune system. The drug is bolstered with steroids and anti-emmetics (anti sickness drugs) and various other things. A very close check will be kept on my renal function as over dose of Rituximab can have an adverse effect on the liver and kidneys, and as I suffered liver failure after the last lot of chemotherapy (thankfully I have regained near perfect renal function) they dont want that to happen again!
Anyways, Diary entry for 2nd December -
Still have abscess behind my tooth on the top right of my mouth, Taking Flucloxacillin 500mg to deal with that, and the infection is going. Pain is being controlled with 2x 500mg co-codamol which includes 30mg of codeine per tablet, and 500mg naproxen - off to happy land we go!
I am still taking the 30mg leflunamide to suppress my immune system, but it doesnt appear to be working otherwise I wouldnt be needing the Rituximab. Supporting the leflunamide is my daily 5mg of prednisolone steroid which i had hoped to get rid off as it piles the weight on me.
With that in mind i have been prescribed Orlistat, a fat reducing pill which lines your stomach making it harder for the fat to be absorbed in an effort to get my weight down as much as possible before i start my treatment.
My throat is feeling like it is narrowing again, with shortness of breathe becoming more common. My joints ache, in particular my knees and hips. My right ribs really hurt at the moment, but I can at least blame that on the horse kicking me rather than my illness. The bruise is something to behold!
Keep draining my eye of gunk from the abscess in there, this time I had blood come out with the gunk, this usually indicates a sinus infection, which i can deal with. The wife wasnt impressed when i ran into the lounge, with bloody tears shouting "look - stigmata"! I thought it was funny and you have to laugh at the illness otherwise you would go mad.
Fatigue - I am soo tired at the moment, another symptom i suppose i should have paid attention to to prepare me for the inevitable.
Right, on with the rest of the day, catch you all laters
Welcome
Welcome to my life, whatever it may have in store for me.
A bit of background for you, I am currently 41 years old, and have a rare form of vasculitis know as Granulomatosis with Polyangiitus (Wegener's)
It used to be called Wegener's but after the discovery that Wegener was a Nazi war criminal who experimented on Jewish prisoners, the name has been changed!
I have been diagnosed with this condition since i was 21, and I have had chemotherapy twice to control it. I can never be cured of it, but at least I can't give it to anyone, as long as I don't give anyone blood or bone marrow that may transfer my dodgy illness.
It is a very debilitating illness. One day I feel like I can run a marathon, other days I feel like the most that I can do is walk from the sofa to the bathroom.
Join me on this blog as you can see what its like for a GPA sufferer like me
A bit of background for you, I am currently 41 years old, and have a rare form of vasculitis know as Granulomatosis with Polyangiitus (Wegener's)
It used to be called Wegener's but after the discovery that Wegener was a Nazi war criminal who experimented on Jewish prisoners, the name has been changed!
I have been diagnosed with this condition since i was 21, and I have had chemotherapy twice to control it. I can never be cured of it, but at least I can't give it to anyone, as long as I don't give anyone blood or bone marrow that may transfer my dodgy illness.
It is a very debilitating illness. One day I feel like I can run a marathon, other days I feel like the most that I can do is walk from the sofa to the bathroom.
Join me on this blog as you can see what its like for a GPA sufferer like me
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