Evening all.
After a couple of months getting used to my Essential Thrombosis and Monoclonal gammopathy of undetermined significance ('MGUS') diagnosis’, my symptoms have increased. Really bad fatigue, abdonimal pain, severe headache, heavy limbs, foggy brain etc.
Ive been advised to start PEG Interferon injections next week and just wanted to hear from people who have found benefit in this form of treatment. Has it helped? Are you experiencing side effects but still feel ita worth it? Stuff like thar really.
Your Essential Thrombocythaemia ('ET') and Monoclonal gammopathy of undetermined significance ('MGUS') sound very unpleasant.
I have a different Myeloproliferative neoplasms ('MPN') to you, Polycythaemia vera ('PV'). This was treated with PEG Interferon for a while but had to stop as my ALT levels went up. As a treatment it worked OK. The injections were not a bother. I did get a chemical form of depression for a while. It would come on a few days after each injection and fade after a few more days. It was quite different to normal depression (which I have also had). If there was something to get depressed about it would fasten on that but most of the time I could just say to my self that it is just the treatment, think about all the positive things in my life and then just ignore it. After a few cycles I did notice it getting better as my body got used to it. After two to three months it was no longer noticeable. Later, when I stopped taking it, any other minor side effects disappeared and the ALT levels gradually returned to normal. Of course not everyone gets depression as a side effect.
Hi @Timmins26, and welcome to the Forum. It sounds like a lot has happened in a short space of time, with your symptoms getting worse just as you were getting used to the diagnoses.
There are a couple of other threads that might be worth a read whilst you wait for more replies. ET diagnosis finally sinking in has lots of members with Essential Thrombocythaemia ('ET') who are on peg-interferon, and ET and starting interferon has people talking about how they got on when they first started. We also have some information about interferon on our ET treatment and side effects page.
I’m also going to bring in our nurses, @BloodCancerUK_Nurses, as you mentioned your symptoms have got worse recently. In the meantime, please do let your haematology team know about the headaches and abdominal pain before you start next week, rather than waiting for your next appointment. If anything comes on suddenly or feels severe, please don’t wait -call your hospital’s 24-hour number or 999.
Thank you @Lucky for sharing your experience so openly. I’m also going to tag @Lizzi, who has talked about interferon here before - Lizzi, there’s no pressure at all, but if you feel up to adding a few words for Aaron, I’d appreciate it.
You can also speak to one of our nurses by calling 0808 2080 888. At the moment it’s a call back service, so leave your name, number and a short message and a nurse will ring you back within one working day. You can also email support@bloodcancer.org.uk.
Do let us know how you get on once you’ve started.
Thank you @Ceri_BloodCancerUK. I really appreciate you taking the time to send such a supportive and informative message. I will check out those other pages for sure.
Im having this week off work to rest and take stock. Its helping me get on top of support groups and learning more about it all. Helping me rest also.
I will have a good look through the suggested links.
Hi @Timmins26, just checking in to see how you’re getting on. I hope the week off gave you a bit of the rest you needed.
Have you started the injections yet? No pressure to update, but whenever you feel like sharing.
If anything comes up you’d like to talk through, you can speak to one of our nurses by calling 0808 2080 888. At the moment it’s a call-back service, so leave your name, number and a short message, and a nurse will ring you back within one working day. You can also email support@bloodcancer.org.uk.
Take care,
Ceri - Blood Cancer UK Support Services