I got diagnosed last week with Essential Thrombocytopenia and I’ve been all over the place. I’ve been told I’ll probably have oral chemo at home. Has anyone got any tips or info on treatment or living with it please?
Hi @jojax a great big welcome and I am glad that you have found us so quickly.
You must be in complete shock and all over the place.
The Blood Cancer UK website gives a lot of useful information generally and specifically to ET and if you would like to talk to someone the Blood Cancer UK support line is there for you and they are all lovely.
You have now entered a world of medical terms and waiting on appointments, tests and results.
I have not had oral chemo at home but hopefully many of us share similar thoughts, feelings and practicalities.
Have you any support, although you are now part of our forum family.
Give yourself some time you have had such a shock and then perhaps write down all your fears, questions, practicalities etc to ask at your next appointment, hopefully you will get a key contact as well to support you.
You will now be asked certain questions like medical history, medications, allergies etc over and over again. I take spare copies of my medications to give them.
My mind goes blank every time I walk into a medical situation !!
I can remember the day I was diagnosed so vividly as if it were yesterday and it was 18 yrs ago.
Let’s hope others will be able to share their experiences and handy tips with you.
The main thing now is to be kind to yourself and really look after yourself. I look forward to hearing more about you.
Dear @jojax, welcome to the Forum and thank you for posting. Your diagnosis is very recent, amy I aks how you are doing? I am sure you will feel the support from the Forum members, they all have experiences that will be so useful for you. Do you have plenty of information regarding ET, if you do need anything please just ask and also if you do need to talk things through please call or email the Support Services Team How to contact Blood Cancer UK | Blood Cancer UK Take care Gemma
You are bound to be a bit over the place to start with.
When you think of something, write it down, so you can ask at the next appointment - and remember to take a notepad with you, to write the answers down, it’s strange how things you think you are bound to remember disappear as soon as you go out of the door!
I have Essential thrombocytheamia and have been taking oral chemo at home for 6 years now - hydroxycarbamide.
It made me feel sick to begin with, it is a well known side affect, so I was given anti sickness pills, they lowered the dose of these pills bit by bit, and I managed to come off the anti sickness pills altogether at about 6 months in.
On the plus side, I don’t have to shave my legs any more,
and I still have my hair - a bit thinner, but then, I am a bit older
Thanks for your reply. I don’t know what drug I’ll be on yet, I’m waiting for a chemo date. I’ve got a list going thanks, I hope I get a long appointment!! Do you take the tablets every day now then? It’s not in pulses like the more intrusive chemo?
The not shaving sounds handy but I don’t have to do it often anyway.
They are capsules, I take them with some water, just like any other drugs in capsules…and with food.
I started on 1x500mg every other day, and it has gradually increased, I am now on 2x500mg a day, I don’t have any other side affects,
I don’t feel tired like some people do.
They were very good at my first appointment, and I took quite a long time going through things, they probably expect that.
I was diagnosed with ET about 6 years ago and prescribed hydroxicarbomide. One capsule a day and 2 on a sunday. This dose hasn’t changed.
I was very wary about taking the treatment, expecting all sorts of side effects but i am pleased to say I have had none. I hope you find this reassuring.
Hi Jojax - i was diagnosed with ET 7yrs ago and have been on oral chemo for most of that time and have on the whole been really well - 2 yrs ago i started getting constant mouth ulcers so changed to interferon injections - however my 2nd Covid jab and the interferon clashed and made me very ill for several months last year so i am back on chemo (hydroxycabamide) and as yet have no problems - like you to begin with i was worried to know i have this for life as have the JAK2 mutation ĺbut it is very liveable with and as long as you have blood tests on a regular basis hopefully your Et will be kept under control - take care
New diagnosis is always a bit scary and unsettling. It’s always a good idea to write it all down. There’s so much information available online but that can go two ways - helpful or more worrying! But keeping a diary/notebook of how you feel, and any concerns helps a lot when you see someone. Your mind does go blank quite often in the short time you have in a consultation.
I have Idiopathic thrombocytopenia and I have no clue what the difference is between ITP and ETP. If someone here knows I’d appreciate an explanation.
Hi, I have been diagnosed with ET for 25 years, and probably actually had it since my teens, and I have been on hydroxycarbamide ( chemo) daily since then. In that time I raised 2 kids , and lived a pretty normal life, so try not to let the word chemo freak you out. There will be a period of quite regular blood tests until they find right dose for you.
We are all different and its a question of what works for you, i had no problems with hydroxy for 20_years , but then had a period of fatigue , which Et can cause but in my case it was the meds and after a bit of a debate about quality of life ( my blood counts were always stable, so drs were reluctant to mess), a long program of dose reduction solved the problem. Really until then ET had little effect on daily life ( although i do tend to get sicker from coughes and colds, and have learnt to rest when sick and not “push through” since it prolongs things)
When i was first diagnosed it was classed as a blood disorder not a cancer ,and again that word is very scary, but it can also be a useful short hand to get others to take any accommodations you need , particularly in these covid times .
Good luck, carol
I was diagnosed with ET about 11 years ago and have been on a low dose aspirin since then.
About 2 years ago my consultant advised me to start taking hydroxycarbamide. I had read about the possible side effects so I was very reluctant to start the medication. Also my platelet level has changed very little over all these years so I kept procrastinating.
However I now have a different consultant and he felt that now as I am older (60+) it would be advisable to start the hydroxycarbamide. I have been taking it since mid January this year and I am very thankful that until now I have had no side effects at all.
Before starting the medication my platelets were around 630 and after just 6 weeks they were down to 450.
I can fully understand your concern as I struggled for 2 years to make a decision but I then came to the point where I felt that I had to follow the consultant’s advice.
It also really helped me when I read other people’s experiences on this forum so I hope you get a peace about your decision.
Essential Thrombocythemia is a cancer. Idiopathic Thrombocytopenia is an auto- immune condition. ET .manifests as too many platelets whereas ITP manifests as too few platelets.
Thank you so much for that explanation that makes it very clear. Much appreciated.
I have had ET for about as long as you,
7 years, and been on hydroxycarbamide all the time. I am now beginning to suspect that because I am old it is damaging my kidneys. I would like to know if anyone else has felt the same. Prescribing advice stresses using the drug with caution in the elderly. But what does cautiously mean? It can only mean be prepared to switch to something else, can’t it? Then suddenly the familiar drug seems to be friendly !
I have blood tests every 3 months, so any affect on kidneys should show up
Hi, I hope you don’t mind me jumping into the conversation here. I was diagnosed with essential thrombocythaemia nearly 2 years ago, during the first lockdown I have been on low dose aspirin to thin my blood since then. Until recently I didn’t really suffer from any symptoms. I’ve been feeling quite unwell and fatigued for a couple of months now and at my last blood test it appears that my platelet level has risen again, concequently I have an appointment on Monday to start taking hydroxycarbamide, I am really worried about taking this medication but hoping I will have more energy and start feeling like myself again. So it is good to read that the side effects weren’t too bad for you. First time I’ve been on a forum group, guess I’ve had my head in the sand for 2 years hoping it will just go away
Hi @Taz a great big welcome and thanks so much for having the courage to post.
You are not alone now you are part of our forum family.
You must be feeling anxious of the unknown.
Please check out all symptoms with your medical team for peace of mind.
Have you got any support from family or friends?
I look forward to hearing more about you.
Look after yourself and be kind to yourself.
Thank you for your kind reply. I am lucky to have a loving and supportive family and friends. My husband will be attending my next appointment with me on Monday, I think it just feels more real and scary because of the treatment. I suppose whilst I felt okay it didn’t really seem like there was anything wrong with me. I just want to feel like me again. So glad I found this group, because I know there are other people feeling similar to me.
HI @Taz, thank you for posting and I am sorry to hear that symptoms have been troubling you. Like you said, hopefully the Hydroxycarbomide will improve your symptoms and your energy will return. Do you have enough information regarding the medication? Do ask if you need anything and of course if you want a chat we are only a phone call away How to contact Blood Cancer UK | Blood Cancer UK. Do take care, Gemma
I have been sent info about what to expect when I start the treatment. I also have a face to face appointment on Monday, so I should be able to ask them any questions. It is reassuring to have a face to face appointment, unfortunately due to being diagnosed during the first lockdown appart from my initial appointment they have all been; go for blood test and phone appointment later in the day. The staff at my local hospital have always been really helpful though and I have contact numbers if I need to speak to anyone between appointments .
So glad I found this forum.