I’m new here. My husband has been diagnosed with Polycythaemia vera (PV) - JAK 2 mutation in July this year. He has been taking aspirin, blood test weekly and sometimes venesection depends on the result. His doctor suggests to take interferon or the other one I think it’s Hydroxyurea, but he’s very concern about the long term side effects since he’s only 40, therefore has been postponing the treatment.
Anyway, we have been doing some research about alternative treatment and have found something called gene editing, or CRISPR - which is a very new kind of treatment that apparently can replace the faulty gene to cure a disease. It makes sense to us, if his gene mutated maybe they can just fix it from the root. Unfortunately we have not found any direct information about where we can get this in the UK so far, I thought if anyone knows anything about this maybe would like to share it here?
Firstly welcome to the forum and thank you for taking the time to post.
I was diagnosed two years ago and now 40 years old. I was on interferon and responded well and levels were controlled and very little if any side effects felt.
I totally understand his hesitation to start treatment without doing a due diligence. It seems apparent that younger people respond better with interferon but there isn’t much research or evidence of its long lasting effects. Hydracarbonmite has been here for ages and though the side effects read scarily and it being a chemotherapy a lot of people respond well from it and have been on it for several years.
I wasn’t aware of any other treatments but will certainly keep an eye out on what you’ve mentioned. Polycythaemia vera (PV) is rare and there really doesn’t seem to much info on it or advancements in trials.
A great big welcome @sisyfloye and @Rammie18 is far better placed than I am to respond to you.
I will copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses in case they can add something,
The Blood Cancer UK support line is also there for you.
Have your questions written down ready for your next medical appointment.
Please let us know how you get on. and really look after yourselves, you sound a great team
Just read in a Facebook group that the treatment you mentioned is very much in its preliminary stage and is in lab only. It’s not yet been tested on people
Hi Rammie
Thank you so much for sharing your experience it’s really helpful to know about how others response to the drugs.
I have also done a bit more research since the post. Yes, still early stage but they have done trials now on human although predominantly focus on tackling hereditary disease.
Welcome to the Forum. Thank you for posting on behalf of your husband (and yourself!).
Wow, what an interesting question about gene editing. I was very interested in reading about CRISPR (that you had added), as genetics and genomics is a real interest of mind, especially with regards to blood cancers. I’m certainly no expert, but I do find it all very fascinating. It’s extremely complicated but I do understand some of it. Whilst the field of genomics is helping change healthcare and disease knowledge month on month, it is still ‘new’ and expensive. Sadly diseases that are more common tend to be researched first, to potentially help treat the most amount of people.
You may want to have a look at this website, if you haven’t already: genomicsengland it’s very informative.
It explains in a clear and easy to understand topics all about cancer genes here: cancergenomics from the same site.
Within this website, you can follow links to taking part in the research too, so it might be worth exploring further if this is something your husband (and you) are keen to do.
Please do let me know any further information you come across, I’m always keen to know more!!
Best wishes to you both, Heidi.
it’s really helpful to know about how others response to the drugs.