Since my SCT I have had a very smooth journey. Yesterday however, I found out that a small amount of JAK2 was again detectable in my blood. Only 0.9% but enough to need further investigation and possibly treatment. I will soon be having my second donor lymphocyte infusion which MIGHT be enough to sort it out, but not necessarily.
I am trying not to worry but am back in anxiety mode. It may come to nothing but my mind tends to focus on less positive outcomes.
Gosh doesn’t life throw these curve ball when you least expect them. I am like you and focus on the what ifs but hopefully all will be well. Rooting for you
Margo
understandably worrying. I hope things get better soon
Hello Jennie, that's disappointing and very cruel after all you have been through but I am sure it's a little bump on the road and you will soon be back on the smooth tar!It is so easy to look on the darker side...its totally natural.... but do your best to think positively and I wish you all the best.
Regards
Christine
Sorry to hear this Jennie. I can understand how anxiety provoking this must be for you.
Let’s hope the donor lymphocyte infusion kicks that Jak2 into touch. Thoughts remain with you! Xx
Gosh what a surprise, but the positive about this is at least they are checking regularly and hopefully will have caught it in time. A real nuisance to have to go through things again but just know we are all rooting for you! Good luck with it all. Janice
Sorry yo hear this, wishing you well. Try to stay positive, you have been so brave. Take care. X
Sending prayers that everything is going to be fine. You’re a strong person and whatever happens, you can handle it.
Thinking of you,
Cindy
Hey Jennie... 
You have been such a tower of strength to all of us who are following your journey...
While this latest development is not a welcomed one, I am sure that you will overcome this just as you have throughout the earlier stages you've navigated to come to this point.
Stay positive Jennie... I am certain that all of our thoughts are with you...
Steve
(Sydney)
Thinking of you and hoping for a good outcome - you are in good hands - can understand your anxiety - would recommend some mindfulness and one step at a time - take care X
Hi Jennie, wishing you well with the next infusion, hope it does the trick. You are an inspiration to all of us and we are thinking of you.
Sorry to hear this, hope it can be sorted quickly. 🙏🏻🙏🏻🙏🏻 ❤️
So sorry to hear this. I hope the second infusion does the trick and that you can avoid further treatment 🤞🤞🤞x
Sorry to hear you have another hurdle. to jump...it must be soul destroying for you.after all you have been through. It's hard sometimes but keep your chin up and soldier on..... you're such a strong person and I know you'll work through this.Thinking of you Lynn.
Wishing you well, we're hopeful you will get through this hiccup.
gosh! Life has a habit of throwing curveballs and it’s always hard not to think the worst. Hopefully your second infusion of donor cells will do the trick and smooth out this bump in the road. In the meantime try and stay positive and fill your time with things you enjoy to crowd out those negative thoughts. This group including yourself has always been very supportive of me and we are all here egging you on now.
Let us know how you get on
Very best wishes, Jan
I’ll be thinking of you. Sending best wishes
Really hope the infusion works for you Jennie. Got everything crossed for you. Good luck x
Hope all goes well and you have infusion soon.. it's hard work waiting and trying not to get negative
Warm wishes to you
Carolyn
Jennie,Completely understandable that this news can shake your confidence. BUT try as much as possible to focus on the positive. You have another infusion coming up - believe it will make a difference. We are all wishing that for you and hoping the road ahead goes back onto the smooth track that you, and indeed everyone, deserve. I believe your positive attitude helped you immensely during the early days of your SCT and it will certainly do the same now.
Sending my best wishes. You've got us all behind you. You've got this!
Hoping this turns into a molehill rather than a mountain. Wishing you all the best my friend.
I am very sorry about this development and hope that the lymphocyte infusion will do its work . It seems unfair that after all the effort to get here you are facing another challenge, but you are a strong person and you will deal with this too. I wish you all the best
Jennie, I'm very sorry to hear this. Please try to stay positive (I know it's easier said than done) and hope for the best. It sounds like you're getting good care and this second infusion may deal with it.
So very sorry to hear this Jennie. Positive thoughts and prayers JAK2 vanishes after second donor injection. Wishing you the very best,
Janet
So sorry to hear this. What a battle. I hope the next infusion can deal with this for you. Best wishes.
I’m sorry to hear this and totally understand the inclination to worry. Someone else mentioned mindfulness. I’ve been trying meditation and mindfulness (even light Buddhism) with some success to deal with anxiety and worry.
I’ll be thinking of you and hoping this next infusion does the trick. 🙏
Sorry to hear. Keep a positive mind. Wishing all the best.
Good luck with the infusion Jennie. I hope it sorts it out for you. It's bound to be a worry so I hope it's soon. All the best Hilary
Really hope the second infusion sends Jak2 finally on its way and you can get back to some normality.
Hi Otterfield,
Thank you for touching base with us, and sorry about the less than perfect test results.
Wishing the best of luck to you, so that it may all resolve in your favor!
Prayers are being sent your way!
God never gives us more than we can handle, but don't we all sometimes wish he didn't have quite so much confidence in us?!?!?
Best,
PA
Thank you all of you for your good wishes, thoughts and prayers. I had the donor lymphocyte infusion on Tuesday but have to wait several weeks before I know if it has been effective. At the moment I am in a very anxious place and find myself worrying about all kinds of other things too. One of my specialist nurses has made a referral to a psychologist who specialises in transplant patients. As we might expect, anxiety is very common post transplant, when so much can still go wrong. I don't really want medication for this as I feel that my liver has had enough to cope with!
Thank you again for all the support, Jennie
Jennie I am glad your specialist nurse is trying to help! We are human and its very hard 'not to worry'.Regards
Christine
Anyone with P Vera taking dagabitran rather than warfarin?
Covid Restrictions Lifted - Rant
