Is relatively newer then existing treatments and seems to work very well/preferred choice amongst the “younger” diagnosed. It’s administered as an injection that you do yourself in the abdomen by grabbing a bit of fat and inserting a small needle. It doesn’t go through a vein so no pressure on doing it correctly and though it may seem scary injecting yourself, it’s actually not that bad as you know when the sharp scratch is going to hit and you dictate the speed. The first time the nurse talks and walks you through it. So I wouldn’t worry about the injection too much.
In terms of side effects, it can be scary to read but bar from a cold like symptoms the first time I never really experienced any symptoms. I was on the lowest dose so that may have have had some influence.
Interferon isn’t a chemotherapy but an immunosuppressant so it’s best to be cautious with colds and flus etc, so your immune system maybe more vulnerable.
The issues with interferon is that though it’s relatively new, no one knows the long term effects or whether it’s good at controlling levels for prolonged number of years. It’s also worth noting that one of the side effects is that it can affect your mood and mental health. As long you you are self aware and/or you have some close who notices, there are things you can speak up about and recognise to take some action. I did notice a change in mood/mental health and wasn’t in a good place but I really don’t believe it was related to the interferon but it mayve made it hit harder.
Though relatively young (I believe) I do have a heart condition that came about while diagnosed with Polycythaemia vera (PV) and as I taking interferon at the time thought it be best to move to hydroxycarbamide. I was really reluctant as this is chemotherapy and reading all the symptoms, from hair loss to fertility issues, to sickness and fatigue, I was really reluctant as I felt I was doing really well on interferon and suffering next to no side effects and symptoms.
Hydroxycarbamide is probably the most popular form of treatment and has a lot of back data to support its effectiveness. The side effects are scary but just like with interferon, everyone is different. You may experience nothing whereas someone else may have a nightmare with it.
Hydroxy comes in the form of tablets that you take, your dosage with fluctuate quite quickly but that it’s purely down to easing you onto it and finding the optimum dosage for you. So don’t panic if you go from one per day to five in the space of a few weeks. Your blood test results dictate everything which you’ll have regularly regardless of your choice.
Despite being on hydroxy or interferon you still may have venesections on the side and you’ll still be taking baby aspirin on the side.
If you chose hydroxy they may also provide you with sickness tabs and paracetamol to nullify the common side effects.
After being adement at not wanting to move to hydroxy my haematologist basically said do you want to live longer if so you need to move to hydroxy, so that being said I have.
One week in, it feels scary taking it, and though I do feel a bit nauseous and loss of appetite I’m not sure if I feel this or because I know it’s a side effect. A get a slight headache now and then but it’s easily treatable. So far so good but time will tell…
So to summarise, I don’t think one favours the other though watching/hearing the webinar, interferon is a good crack to start on. It’s not chemo and if tolerated is very manageable. If that fails you always have hydroxy which is tried and tested. If hydroxy fails then there are new treatments not available but theses are only available if hydroxy doesn’t work not if interferon doesn’t work.
Don’t worry bout making the wrong decision, as as long you stay in contact with your med team and keep a record and report any symptoms you feel and regularly have blood test to see the effectiveness of your treatment, things can be altered and changed very quickly.
It’s just about finding what’s best for you.
Ah nice… wish the rams were doing better… on a side note choice of my name and picture is down to the fact that I was their team match day mascot for 3years in their pomp in the championship and that’s actually me in the photo!
My family/friends don’t know about my diagnosis so keeping my symptoms to a minimum and trying to live as normally as I can has been paramount but there are times where it’s incredibly difficult why is why I’m so thankful of this forum and it’s amazing people that keep me going and feel supported, which helps massively.
Again thank you so much for posting as I’m sure it will help others and encourage others to share their thoughts on the matter.
Hope the funeral goes well for your dad you and for the family and friends.
Be sure to keep us all updated on how you are.
Take care and be kind to yourself x