It’s 5am and I can’t sleep. I have finally been given the medication for the recently diagnosed Essential thrombocythemia (ET). I have already reacted to Clopidogrel after taking one! Felt like I was being attacked by red ants, the itching was awful
So thought would revert back to aspirin but having just read the dos and donts on the Allopurinol 300mg it says seek medical advise if on aspirin , blood thinners, cyclophosphamide and yet I have to take this 300mg daily for 30 days!!??
I have been reading all your comments and the word SHOCK comes up a lot which whilst reassuring confirms my state of mind. I am distraught that as a WWW (well worried woman)which I have been ( until reached 70 in September) and told I have a blood cancer by phone from the haematology registrar , reassured by the specialist nurse that I am to forget the word cancer, it’s a blood disorder and am now looking at 5 boxes of pills and terrified as to what these chemicals are going to do to my body never mind my mental state. Apparently you take them all at once apart from the lansoprazole which is an hour before everything else then you take the clopidogrel as you can’t take the aspirin, Domperidone an hour before food then you take the hydroxycarbamide and allopurinol with food so on that basis I need to start now to be able to get to work for 8.45am.
I feel physically sick just typing this never mind swallowing the tablets.
I am hoping anybody else recently in the same position can give me some tips and hints on this massive lifestyle change and how you manage the pills and breakfast ideas as the list of foods to avoid seem endless including milk so that rules out cereal for me. I sound hysterical reading this back but that’s because I am! So upset as I dont t even feel ill and when I read all the common side effects, I think I have most of them before I have even started the tablets.
So today is day 1 and I apologise to any reader who will be thinking how lucky I am to not have anything worse but bear with me. I was grateful to be told about this forum so I need just as much support for a while and I hope, when (not if) I have calmed down , I can help the next person in SHOCK too.
Thank you for reading this to the end and I look forward to ‘meeting’ you all.
Hi @Lesley70 thank you for your honest post, I am so very sorry to hear you’re struggling. Have you given your clinical nurse specialist a call to talk things through? If not, we’d really encourage you to do so so that they are aware of everything you’re experiencing.
Please remember you’re not alone @Lesley70. Hopefully other people on here will be able to give you tips around how they manage similar things, I think many will be able to relate to many of the things you’re feeling right now.
Please do feel free to give us a call if it might be helpful, we’re here on 0808 2080 888.
Oh @Lesley70 thanks you so much for having the courage to write your post.
Firstly you are part of our forum family so you are never alone now.
Also I would say personally that you might well be in shock, I really was when I was when I was diagnosed.
Perhaps reading too much on the internet might not be a very good idea, just keep to the Blood Cancer UK website and booklets from the hospital or your GP.
If in doubt check things out with your medical team or Blood Cancer UK support line as @Alice_BloodCancerUK has given you.
I find that I keep my medical team aware of all symptoms and side effects, Tell then the severity and impact on your life.
Personally I also tell them about how I am feeling emotionally, psychologically and practically.
I find accepting help or asking for it so difficult.
I found counselling helped me.
As for diet I personally just follow a generally healthy balanced diet.
I have also realised it is not a competition with others.
This is not a medical response but a personal experience one.
Perhaps just give yourself time and be ever so kind to yourself and keep posting
Morning @Lesley70
I hope you managed to get back to sleep. There is No taking away from it. It’s a scary world to start with but it will soon become second nature to you.
I don’t have the same blood cancer as you I have lymphoma and I am not in treatment any more, but various conditions since treatment mean I take 12 tablets a day currently 16 as I am on antibiotics.
Yesterday I sat popping them out without even looking at the boxes or the doses it’s just so much of a routine now. Some are an hour before food one I have to be standing up after I have taken it but they are what keep me upright and breathing every day.
Medicine is a miracle in my view yes it is a lot of chemicals but so is most food we eat unless we are completely organic so I have chosen to take my medicine every day with a good spoon full of sugar:) during treatment I literally did that as there were days when I couldn’t swallow the fifteen tablets required so I would put them in honey .
I can’t give you much advice on your medication because mine was different but I do know it will soon become second nature and just a routine. It will get easier. Do let us know how you get on and any hints and tips.
I have a pill box helps lots.
Good morning Erica
Thank you for your email this morning. It was lovely and reassuring to hear from you to know the Forum works!
Day one was fine other than having to take at least half an hour between all the tablets so my day starts at 5am! So far apart from copidogrel causing uncomfortable itching and a constant headache (which I think is me clenching my teeth during the night) I feel okay but time will tell.
I am back at hospital in two weeks to assess the bloods and decide on any increase of tablets and I will use the forum as a sort of diarised update if you think that’s appropriate? I am so upset and angry that my body has put me in this position but then it could be so much worse and that makes me feel guilty for being so distraught .
Kind regards
Lesley
| Erica Forum Support Volunteer
November 1 |
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Oh @Lesley70 thanks you so much for having the courage to write your post.
Firstly you are part of our forum family so you are never alone now.
Also I would say personally that you might well be in shock, I really was when I was when I was diagnosed.
Perhaps reading too much on the internet might not be a very good idea, just keep to the Blood Cancer UK website and booklets from the hospital or your GP.
If in doubt check things out with your medical team or Blood Cancer UK support line as @Alice_BloodCancerUK has given you.
I find that I keep my medical team aware of all symptoms and side effects, Tell then the severity and impact on your life.
Personally I also tell them about how I am feeling emotionally, psychologically and practically.
I find accepting help or asking for it so difficult.
I found counselling helped me.
As for diet I personally just follow a generally healthy balanced diet.
I have also realised it is not a competition with others.
This is not a medical response but a personal experience one.
Perhaps just give yourself time and be ever so kind to yourself and keep posting
Hi guys
Thank you for all your replies: .so reassuring for me. I am glad to say past two days the itching has subsided from copidogrel!
Easing myself into the routine and bought a pill box!
Hopefully when I have my next blood test, my count will reduce to an acceptable level and I can relax a bit more. Currently waking at 4am every morning worrying about the minimum half hour intervals between various tablets but listening to you guys, I know I will get into a routine and am grateful
I can take them all once a day and not having to take more later,
Thank you
Xxx
| Jules Forum Support Volunteer
November 2 |
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Morning @Lesley70
I hope you managed to get back to sleep. There is No taking away from it. It’s a scary world to start with but it will soon become second nature to you.
I don’t have the same blood cancer as you I have lymphoma and I am not in treatment any more, but various conditions since treatment mean I take 12 tablets a day currently 16 as I am on antibiotics.
Yesterday I sat popping them out without even looking at the boxes or the doses it’s just so much of a routine now. Some are an hour before food one I have to be standing up after I have taken it but they are what keep me upright and breathing every day.
Medicine is a miracle in my view yes it is a lot of chemicals but so is most food we eat unless we are completely organic so I have chosen to take my medicine every day with a good spoon full of sugar:) during treatment I literally did that as there were days when I couldn’t swallow the fifteen tablets required so I would put them in honey .
I can’t give you much advice on your medication because mine was different but I do know it will soon become second nature and just a routine. It will get easier. Do let us know how you get on and any hints and tips.
I have a pill box helps lots.
Hi @Lesley70 that waking up at 4am, my mind then goes off like a washing machine in all directions with thoughts and feelings
Yes, I have a pill box too, I find it very useful.
Be kind to yourself and please do keep posting
Good morning everyone
Well week one of taking the full dosage, I am pleased to say the red ants (itching!) have disappeared and my body seems to have accepted its lot. I do leave at least 30-45 minutes between each tablet so the day starts early and i now have a small breakfast every morning with the kidney and chemo tablets. The kidney one with food and the chemo one just before I go to work. I have had no nausea at all so really thankful for that as it’s my worst nightmare even pre this new life!
I did wake up one morning to see blood all over the top sheet so dashed into bathroom to see the smallest spot on my nose (no idea how that happened🤔) which took three days to stop bleeding! Assuming that’s the copidogrel ??
I have certainly calmed down thanks to your lovely support and comments and just hope that next week my blood results show a reduction in the white platelet count and I don’t need to increase the intake.
Thank you for holding my hand and reaching out to me. I feel we are friends already and I can’t thank you enough. Xx
November 4 |
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Hi @Lesley70 that waking up at 4am, my mind then goes off like a washing machine in all directions with thoughts and feelings
Yes, I have a pill box too, I find it very useful.
Be kind to yourself and please do keep posting
Glad you are getting into a routine and the symptoms are subsiding.
Oh, what a shock to wake up and find blood all over your top sheet, I always think the blood is so visual and stark.
We are all holding your hands and sending you virtual hugs when you need them xx