have recently been diagnosed with Essential thrombocythemia and my platelet count is around 1100. I have been prescribed Peginterferon following a rountine blood count (I was already taking Clopidogrel blood thinners due to a mini stroke 4 years ago) however I am very weary about taking the Peginterferon due to the side effects that it has, namely fatigue and depression. I have discussed this with my hematology doctor who advised that I should take it. I am also a heavy smoker and also smoked canabis daily. If it wasn’t for the blood results I would not have known that I had Essential Thrombocythaemia ('ET') as I was not experiencing any symptoms at all and I have always been a very energetic person. I stopped smoking both cigarettes and canabis around 3 weeks ago and since doing so, I can barely get myself out of bed and I am hardly eating anything, mainly due to sleeping almost 24 hours a day. I took myself to the emergency assessment unit the other day as it is practically impossible to get a hold of my hematology team at all. They did another full blood count and said that it came back ok and the effects that I am feeling are likely due to the pegasys injections. Again I explained that I have not been taking these. Is it possible that the canabis was masking my Essential Thrombocythaemia ('ET') symptoms? As it is only since I stopped smoking this that I have felt ill. Before stopping I was one of the most energetic people that I know and now I’m struggling to get out of bed. I have smoked canabis for 35 years and always been fit and well. I am considering taking it in an edible form instead of smoking it to see if it helps. It just seems very strange that I had no symptoms at all before stopping the canabis. I have booked an appointment with my GP today to discuss this because I can not get a hold of my hematology doctor or nurse and neither are returning my calls. I do have another appointment with them at the end of the month but not sure i can wait that long as I have already lost a stone and a half since stopping smoking 2 weeks ago due to not even being able to get out of bed most days.
Hi @Heather2, welcome to the Forum, though I’m sorry about the diagnosis that brings you here, and sorrier still that things have got so difficult since.
I can’t answer your question about whether the cannabis was masking symptoms of your Essential Thrombocythaemia ('ET') as that really needs a clinical view, so I’m going to bring in our Blood Cancer UK nurses, who’ll be much better placed to help. I’ll pop them a message now.
It’s good that you’ve got a GP appointment today. It would definitely help to take the full picture with you (the weight loss, the sleeping almost round the clock, not eating) rather than just the tiredness on its own, since together those are a significant change worth taking seriously.
Given how hard it’s been to reach your haematology team, it may also be worth asking your GP whether they can help chase a response from them, especially since the emergency assessment unit didn’t get to the bottom of what’s causing this. If things get worse before you’re seen, please don’t wait for your GP or haematology appointment - please go back to A&E or call 111.
Our Support Line is also there if you’d like to talk any of this through. You can call them for free on 0808 2080 888 (option 1) or email support@bloodcancer.org.uk. And there’s more on Essential Thrombocythaemia ('ET') generally here, if useful: Essential thrombocythaemia (ET).
Please keep us updated on how you’re doing.
Take care,
Ceri - Blood Cancer UK Support Services
Thank you, sorry this is a short reply, I’m currently struggling to keep my eyes open, but thank you for the info I really appreciate it xx
Kind regards
Heather Hall
Hello @Heather2,
Just to say that I’ve spoken to the nurses, and they said they didn’t have anything to add as they wouldn’t be able to to say whether the cannabis was masking your symptoms. They also said it’s reassuring that you’re seeing a GP today, and asked that you please let us know how you get on and of you have any follow up questions.
Take care,
Ceri
Hello there @Heather2, welcome to the forum at what must be a worrying time. I’m really sorry to read of your diagnosis with Essential Thrombocythaemia ('ET') but want to reassure you that you’ve come to the right place.
I see dear @Ceri_BloodCancerUK has offered you great support already and would urge you to read the Blood Cancer UK information about Essential Thrombocythaemia ('ET').
I live with a closely related type of blood cancer to Essential Thrombocythaemia ('ET') called Polycythaemia vera ('PV') and these are both types of Myeloproliferative neoplasms ('MPN'). May I just say that stopping smoking is a massive achievement, no easy task even without a new diagnosis like Essential Thrombocythaemia ('ET'). We are recommended to stop smoking when we live with Myeloproliferative neoplasms ('MPN') as clotting is our main risk, so that’s great you’ve achieved that.
Perhaps side effects from stopping smoking are to be expected, what did your doctors say when giving your Essential Thrombocythaemia ('ET') diagnosis? Like Ceri says, any new or changing side effects and symptoms should really be passed by our specialists. Do keep note of any symptoms like you have been as it helps us stay aware of changes in our bodies and we can pass this onto our doctors.
For what it’s worth, fatigue is sadly a very common side effect of Myeloproliferative neoplasms ('MPN') and other blood disorders from what I’ve been told by my haematologist and other forum members. Fatigue can be caused by the Essential Thrombocythaemia ('ET') itself as well as treatments: Tiredness (fatigue) and cancer | Macmillan Cancer Support
Do please let us know how you get on @Heather2.