Dear All
I have used this forum for a while and find your help so valuable.
I have posted a question before about ET (diagnosed in 2021) and the fact that my platelet count keeps rising, it never goes below the 600s and then rises again. l now have a new question.
My platelet count is now 720 even though l am taking Hydroxy and quite a high dose 24 tablets over a 7 day period. My doctor has suggested that l now try Interferon as l tried Anagrelide before and suffered worrying side affects.
What are peoples views on Interferon?
I know it’s is an injection once a week and the side affects can be unpleasant.
Also do l have to take the Hydroxy along side the Interferon or is it one or the other?
Any help or advice would be greatly appreciated.
Maureen x
Hi @Maureen31 I don’t know if you have seen this thread and there might be others
Interferon or hydroxycarbamide? - Going through treatment - Blood Cancer UK Forum which might help you.
It sounds as if your queries are also ones for your doctor or nurse as all patients are unique and lots of things are taken into account when when suggesting treatment options.
Take care and don’t forget the Blood Cancer UK support line is there for you on 0808 2080 888
Please let us know how you get on
Hi @Maureen31
I was on interferon weekly on a 45mg dose which was half the pre-filled syringe.
At first I was really nervous and apprehensive about doing injections but after doing my first in front of a nurse it’s never phased me and it’s really not that bad. You take the injection into you abdomen just squeeze a bit of flab and you take it really slowly. The needle is small and pain free. You may get flu like symptom at the start but that goes quickly and those symptoms never return. I never had any issues the day of or after and pretty much carried on as normal. While I was on it all my levels were well controlled and stable and though the side effects and other peoples experience may make you nervous… I had a really good experience on it. If you read up on hydroxycarbamide you’ll read scary things but like you’ve said you’ve been absolutely fine on it.
To my knowledge you take one or the other but not both though your medical team may want a gradual transfer.
If you have any questions on interferon I’ll be happy to answer them.
Many webinars I’ve seen is that interferon seems to be the better/newer medication but it hasn’t been around as hydroxycarbamide.
Also the link @Erica has attached is an excellent read and hopefully puts you mind at ease
I have both hydroxycarbamide 11 caps at the moment per week and also 90 mg injection of interferon.
I started on the 45 mg interferon each week with no side effects. When it was put up to 90 mg a couple of years ago I felt terrible the day after the injection so took it easy. Over a few month these side effects eased off and after a year all I get is blurred vision for a day or sometimes two after injecting. My platelet count is well controlled by these drugs. Hope this helps.
Thanks to you all for your replies. My appointment last week didn’t happen so a new appointment has been made for the 9th March. I also have Covid again and feel like l’ve been hit by a bus. I really do appreciate people experiences and advice l take it all on board xx
Oh @Maureen31 what a time you are having, it is probably a good description to say that you feel like you have been hit by a bus…
Thinking of you loads and please let us know how you get on on Mar 9th.
Be very kind to yourself
@Maureen31 sorry to hear you have covid again. Have you let your healthcare team know so they can monitor you? If not, we’d really encourage you to give them a call and let them know how you’re feeling. We have a webpage here around accessing post-exposure covid treatments but if you want to also talk it through with us we’re only a phone call away on 0808 2080 888 - Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK Take care, Alice
Hi Alice thanks for your advice. l had an email from NHS randomly about letting them know if l have Covid due to my blood condition. I sent my positive test and after a phone call today l am being sent Paxlovid to take for 5 days.
Ironically l also had a call this week from
the specialist nurse at my hospital about an appointment l had which was cancelled without me knowing. I told her l had Covid and she said because ET wasn’t a blood cancer and the Hydroxy wasn’t deemed to be a chemotherapy treatment she wouldn’t put me forward for any antiviral medication. I am confused!!!
BUT l’m not confused about all the help and advice l receive on this forum. Thankyou Erica for all your kind words as well. This journey l am on is made easier with you all along with me xxxx
Hi @Maureen31, so pleased to hear you’re receving Paxlovid. You may wish to send this to your specialist nurse - Blood_cancer_and_covid_medicines_UK_September_2022.pdf (bloodcancer.org.uk). It’s a document put together by Blood Cancer UK and the British Society of Haematology and is written specifically for HCPs about post-exposure covid treatments.
People with MPNs who are on treatment are eligible for an assessment by a CMDU for post-exposure treatment after a positive covid test.
If you want to talk any of this through, we’re only at the end of the phone/email. Wishing you a speedy recovery!