About 1 year ago my husband (35 year’s old) was diagnosed with JAK2, bone marrow biopsy confirmed Polycythaemia vera (PV). He was admitted into hospital after collapsing with stomach pain and scans revealed an extensive amount of blood clots in his hepatic, portal and splenic portal vein system and a big clot in his liver. Since then we have been on a rollercoaster, never knowing how long we have together. He started on Besremi injections 3 months ago alongside apixibhan blood thinner, carvidilol to ease the hypertension in the veins and lansaprazol to help his stomach lining. He takes alot of tablets everyday. We had great news this month that his Haematocrit level is now 0.4 which we are told is the expected level for his condition and his liver bilirubin is at 36 (lowest its ever been, at his worst it was over 500).
I would like to know if there is anyone else out there who had blood clots due to the jax2 with Polycythaemia vera (PV)? And what treatments are you using?
We are wondering how the body gets rid of the blood clots. This is what is concerning us. We feel the jak2 is under control with the besremi but it’s the effect of the blood clots straining his organs in his body that worries us. Is there any hope his body can break down these existing blood clots over years??
Hi @Barbera86 a great big welcome to our forum and your very natural concerns about the unknown comes from your post.
Others may be able to share their experiences
I also attach the Blood Cancer UK website details on Polycythaemia vera (PV) treatment
and they also mention Myeloproliferative neoplasms (MPN) voice which you might like to look at. Polycythaemia vera (PV) treatment | Blood Cancer UK
As for all your fears, questions and practicalities they are perhaps best written down and asked of your husbands specialist nurse or medical team because they know your husbands whole medical history.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Please do keep letting us know how you are getting on and please do use our forum to say how it really is to be you.
Look after and be ever so kind to yourselves
Hello there @Barbera86, welcome to the forum. It’s so lovely that you’ve joined to find ways to support your husband. It must have been an alarming and worrying time since his hospital stay, and I imagine you might be feeling rather vigilant of clotting issues, understandably!
In 2023 I also found out I have the JAK2 gene mutation and after a bone marrow biopsy this led to my diagnosis with Polycythaemia vera (PV). Although I didn’t have any clotting at diagnosis, I did survive a heart attack many years ago caused by a clot. Since the heart attack I’ve taken daily aspirin to thin my blood, and since diagnosis with Polycythaemia vera (PV) I’ve taken daily hydroxyurea to disrupt the overproduction of blood cells inherent in these MPN.
While I’m not a doctor, from what my haematologists have told me it is indeed good news that your husband’s haematocrit is now in the normal range! Bringing our haematocrit below 45 % means we’re less likely to develop clotting as our blood is thinner, less viscous. One of my phlebotomy nurses said it can get “thick like molasses” when it’s higher than 50 %. As you know, clotting is the main risk of Polycythaemia vera (PV), so a lower haematocrit is really great! Time to celebrate that test result I’d say.
Our treatments should thin our blood and reduce the amount of blood cells our bodies make to minimise risk of clotting. The clots your husband had should have dissolved back into his bloodstream, if my understanding is correct. I’d directly ask his haematologist for clarity about treatment and whether his clotting has gone. I’d also ask if he needs all those medicines a year later and what his treatment plan will be going forward—will he stay on his current medicines/treatments, or change over to different cytoreductive medicine like hydroxyurea with occasional phlebotomy, as is often the case according to others around the forum living with Myeloproliferative neoplasms (MPN).
Sorry if that’s a big old jumble of terminology! Always ask the haematologist in charge of your husband’s care, they should be able to explain the treatment plan and how it’s going. Ask about the clotting for reassurance I’d say. And if they change your husband’s medicines make sure to ask about how it might affect fertility as, for example, hydroxyurea can affect that being a form of chemotherapy.
Thinking of you both. I hope I haven’t added more worry @Barbera86! Do please let us know how you both get on.
@Duncan thank you very much for taking the time to reply in great detail. Sometimes its knowing you are not alone that helps the most!
It was a miracle his body recovered to allow him to leave hospital. You see his body started to shut down and go sceptic due to the volume of blood clots. However, we are positive people and once he was discharged, we have since had a year with ups and downs but mostly good news!! We even managed to get married which was a day i thought wouldnt come at one point.
Thank you for your positivity too!! We celebrated both the Haematocrit and bilirubin level!!! We have a wonderful Haematologist and heptologist. We would both love to hope his blood clots will be absorbed and dissolve. I know this is one of the knock on conditions of Jak2 & Polycythaemia vera (PV) and I’m sorry to hear about your heart attack. That would have been immensely scary. I’m really glad you are don’t well. I just wondered if anyone has faced the volume of blood clots that we have and had them eventually disappear?
Our Haematologist monitors the levels and said another scan may tell us more. Our next heptology appointment is at the end of Jan where we hope to find out if he is going for a scan.
We wanted to move abroad in the future. We are going through IVF now. Its so hard trying to plan our future like normal couples when you are faced with this. Anyway, I thank you for your lovely reply @Duncan. I hope things keeping looking up for you!! Take care x
Thank you @Erica we have a wonderful team of support. No answers to these questions yet, but i think that’s because theres so many blood clots. The fact his levels have really improved is a positive step in the right direction. Fingers crossed we get 18 years and more!!
Hi @Barbera86 I cannot believe how much you have going on.
I great big congratulations to your both on getting married.
You say you are going through IVF now, I think that is a really big thing emotionally and physically, take lots of special care of yourself,
I am not a medical person, but from experience of other issues, please do let your your husbands medical team know about your IVF treatment so they know what is going on for you both.
I picked up on what you said about ‘normal couples and being able to plan their future’ and something someone said to me once is that all anyone in this world actually has is the here and now, people just think they have a mapped out future.
This was brought home to me with a bump before Christmas as I had Christmas, the New Year and my birthday all mapped out and then I had a fall and slightly fractured my pelvis, that was my plans shattered.
Sometimes my dreams and plans have to be changed or adapted, but I will never lose them.
My diagnosis gave me the opportunity to decide what I wanted out of life and with whom.
Yes, celebrate all the wins, big and small, I say.
Be very kind to yourselves and keep in touch.
Oh you’re most welcome @Barbera86! Your husband really isn’t alone with his diagnosis, although I empathise with how lonely it can feel going through this. It really is a lot to take in so I’m very glad he has such a supportive partner. Sincere congratulations on your marriage and trying for a child—how lucky to have found each other.
You’ll see there are lots of folks using the forum who live with Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV) and Essential thrombocythemia (ET), in many cases living well into older age with relatively minimal side effects, although of course a diagnosis like these is terrifying enough, regardless of any annoying symptoms. I haven’t read of others around the forum tolerating as much clotting as your husband has, so I hope his treatments continue to help minimise their risks. Definitely ask your husband’s specialists about what to expect with the clotting when you see them later this month.
I love what dear @Erica says about living in the here and now and to be open to adapting plans. That’s been helpful for me too, to be more mindful and yet spontaneous. Easier said than done when we feel social obligations or peer pressure! Something my therapist said the other day has really stuck with me, how having a chronic form of blood cancer gives permission to decide when you’re ready to do stuff. If your husband isn’t feeling up for doing something due to low energy, high fatigue, whatever it may be, then he has a very good reason to feel like that! Something I try to do when fatigue takes over is to rest from whatever activity I am doing and then to resume it later.
Just wanted to share something morbidly reassuring my lovely haematologist told me; that folks with Polycythaemia vera (PV) are much more likely to die with them than from them. Our lives shouldn’t be shorter due to these diagnoses—we can reach old age even if diagnosed when young, like your husband and me. I hold that in mind when I’m feeling like living with Polycythaemia vera (PV) is too much, maybe it could reassure you and your husband too.
Keep us posted about how you both get on @Barbera86. Have a look around the forum and I bet you’ll find others living well with Myeloproliferative neoplasms (MPN) with all sorts of great tips.