Just hoping you lovely people can help me to decide which treatment to start. My consultant has said I can choose but, how do you decide? I spoke to one of the blood cancer nurses, who was very helpful and kind. One of her suggestions was to reach out to the community.
Any recommendations welcome. You all helped when i first arrived on here x
Hi @Lynd, what a dilemma for you when these options are both unknowns
I hope that someone on here will be able to share their experiences for you.
Perhaps write a list of your fears and questions you might also have for your consultant too.
Look after yourself and please do let us know how you get on x
Thank you Erica. My treatment date has been set and I’ve to ring to let them know my decision. I’m in the process of arranging my dad’s funeral too so, it’s a lot right now. Really appreciate you getting in touch and your thoughts xx
Oh @Lynd I am so sorry to hear about your dad, you really have got a lot on.
You also need to give yourself time to grieve, and I have found that it takes time to come to terms with.
We all go through it in different ways and there is no right or wrong way.
Be ever so kind to yourself and take as much time as you need xx
Thank you for your lovely words. I guess there’s never a good time x Just hope others in the community can share their experiences. I know how much it helped when i first popped on here.
Have a relaxing night, lovely lady xx
Sorry to hear about the passing of your father…
I have Polycythaemia vera (PV) and have experiences of both medications so if you’re wanting a patient perspective I’m more than happy to discuss them with you along with any questions or concerns you may have…
On a medical perspective, I attended a webinar on Polycythaemia vera (PV) which you may find insightful which discusses both… along with new treatments if interferon and hydroxy don’t work
Again feel free to ask me anything
Kind regards and hope you find the strength to get through this difficult time
Thank you, @Rammie18. I certainly would like to hear your thoughts. I think the side effects are my biggest fear.
Thank you for your kind words x you’ll be
pleased to hear there will be some DCFC touches added to dad’s celebration.
Interferon:
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.
Hydroxycarbamide
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
Thank you sooo much, Rammie, for taking the time to write this and explain everything in real terms. I am so grateful. I am 60 now, so I’m not young. I know I’m going to read through this many times, and it will help me.
Have a great day.
Hi @Lynd in my book you are still young, my 70th, just before lockdown was my best ever.
I had lots of Colin the Caterpillar cakes!!
Hi @Lynd in my book you are still young, my 70th, just before lockdown was my best ever.
Hi @Lynd. What a really difficult decision to made and it must be even harder when you are having to arrange your dads funeral.
I can’t advise on treatments but can see that @Rammie18 and given you some really useful information.
Please keep us updated on what you decide and most importantly, take good care of yourself X
Knowing what I’ve read from other peoples experiences I think hydroxy maybe the more stable for you as it’s more tried and tested.
The good thing and take it as a positive is that you’re given options. Most people don’t get that so it’s a good sign.
Always happy to answer any questions you have.
With everything going on try and take on and focus one thing at a time. Try not to let on thing be a distraction for the other, with treatment and a funeral to think about, you want to limit the number of regrets
Thank you @Rammie18 i really do appreciate all your support xx
Oooh, I do love a Colin cake. Great to hear you had a very happy birthday 
Thank you for your lovely message. Will do x