Returned JAK2 increasing

[Otterfield]

A couple of months ago I posted that a small amount of JAK2 had reappeared just over a year post transplant. This has now increased to 21%. My blood counts are falling and it seems that my donor cells are now struggling to make new blood cells. The treatment is to have more donor lymphocyte infusions, at higher doses which MIGHT get things back on track, but there is no guarantee. My anxiety levels are through the roof. I fear that I am one of the 30% who relapse after transplant. I have begun telephone sessions with the hospital psychologist as my head is all over the place.

[Aneliv9]

Hello.. a second transplant isn't possible? What does your doctor advises you?

[bruddery]

I’m so sorry to hear that the jak2 is increasing. I know you prepared so well for the initial sct keeping us all informed of the process, and it is always so good for us to hear about this process, in case any of us are fortunate enough to be offered one in the future. Hopefully you will get it sorted out before too long. I can quite understand being in need of the psychologist at this time. I guess we all hope that the initial sct will work. Even though we are told sometimes it doesn’t take too well,I guess we can all be optimists and close our thoughts to some parts! I know that Chris (aka Jedi Reject) had a somewhat tough time of it for quite a while… I’ll ask the universe to send down help (as Sand Dancer used to say). Best wishes. Janice

[Spanelmad]

Well done for seeking help with the psychologist hopefully you can sort out your plan of action on treatment.keep the faith all is not lost.

[hunter5582]

Sorry to hear this news. Kudos for seeking support for such a troubling issue. Please keep us informed about how things are going. There a a lot of people here who will support you. Thoughts and prayers headed your way.

[ChillyAsh34]

Hope all is resolved quickly ,prayers heading your way keep strong take care you are in our thoughts

[JediReject]

Hey Jennie , , I'm sorry to read your post and you are doing the right thing reaching out. . Please don't lose hope as it may well yet be possible to turn things around , , I've seen it happen with a few of my contemporaries in clinic. I'm sure your Consultant and care team will do all they can for you. We're all walking on thin ice and by coincidence my counts had dipped considerably at my last clinic and I'm due a retest next week to see if they've perked up any but I feel ok for now.

Try keep your chin up during this tough period of uncertainty.

Chris x

[Cja1956]

So sorry to hear this, Jennie. You’ve always had such a positive attitude and reaching out to someone for help is the best thing. I’ll be praying for you that the donor cells do the job. We are all here for you.

Best wishes,

Cindy

[MCW22]

Hope things improve for you and well done for posting your experiences on here as the information will certainly help others.

Carol.

[S031251]

I’m so sorry you are having such a distressing time - hope the donor cells work for you - we are all here for you.

Anna x

[JAB6]

So very sorry . Best of thoughts and prayers going up for this to turn around. So glad you have professional support.

Janet

[Scaredy_cat]

I'm so sorry this has happened to you and hope the lymphocyte treatment works.

[mhos61]

Jenny, so sorry to hear this. Understandable your head is all over the place, it’s been a rollercoaster for sure.

Glad to hear you have access to the hospital psychologist, and hope it’s helping. We’re always here for you too. You’ll be in our thoughts. Xx

[JP1952]

I am so sorry to hear about this setback after everything you've been through. It's understandable your head's all over the place so I hope you get lots of support for that. We are all rooting for you on this forum. Hopefully the lymphocyte infusions can turn things around again . Thinking of you.

[Tartanlady]

Hi Jennie,That's not the news we were hoping for and I honestly can't imagine where your head is just now. I must congratulate you on asking for help though, it's not always easy to do. Fingers crossed you and your team can turn this around.

Love to you all, Christine

[mark382]

Oh no. Sorry to hear this as you were doing so well and so positive. I'm not surprised your head is spinning. Everything crossed the increased dose will turn things around for you. In our thoughts and sending out all our our positive energy to you.

[Threelions]

Hey, I’ve always been inspired by your posts as to how you’ve navigated the maze of treatment & latterly your transplant. Its certainly given me lots of positivity. It must be very worrying for you at this time. However, You’ve always been very good at focusing & dealing with each issue as it’s arisen & Im sure you’ll continue to do this. You’ve said that the proposed treatment moving forward might get you back on track & so that’s what I’m sure you’ll focus on.

In the meantime I’m sending you a huge hug and positive thoughts. Know also that you’re in my thoughts and prayers & you know you have the love & support of all your friends here .

Mark

[gset]

we are thinking of you, and hope they can do whatever is needed to help you.

[Poppy6060]

Hi sorry to hear this news you are under a good team get all the support you can sending hugs xx

[ainslie]

sorry to hear that and about your anxiety, but try to keep positive, the infusions may work and you could be 70% as opposed to 30%, also maybe your docs have other options if needed, never give up, easy for me to say but we must try 🤞

[lizzziep]

Sending you a virtual hug and prayers for successful treatment 🙏🙏🙏❤️❤️❤️

[Aldebaran25]

I am very sorry about this and I sincerely hope the infusions work. Your journey is followed by many of us, thank you for keeping us informed, It must be very hard not to be anxious constantly and it is a really good idea to have a psychologist’s support. A big hug and massive solidarity!

[Solyesh]

Sorry to hear this but very glad you are reaching out for help! We are all in your corner!

[jointpain]

I hope you Get over this latest hurdle and grow stronger because of it. I didn't even know that 30% relapse!

[Janis12]

Sorry to hear this but inspired by your drive to seek help from the psychologist, some folk would give up. All our thoughts are with you, we are all treading on egg shells with this blood condition but there is always hope. My husband had motor neurone disease, no hope from day one, what a journey that was and I often think cancer would have been a better option as there is hope and often time, that makes a huge difference. x

[Meatloaf9]

So sorry to hear of this setback. Hoping your team can come up with a solution. Prayers coming your way- one down, more to come. Best always.

[GardNerd]

I'm sorry to hear this and also glad to hear that you're taking the needed steps - for both mind and body. You will be in my thoughts and meditations as the journey continues. These chronic illnesses are not for the weak, that's for sure.

[Phil1955]

try and stay positive I can’t comprehend what your going through it’s about time we had some positive research and cure for these MPNs

Stay strong

[light]

I am so sorry for your current situation. I cannot even begin to imagine what I would do but I can see you are strong and courageous and you keep going. 🌹

May our Lord Jesus send you a big miracle of healing and His love. He is God of miracles and He loves you. In His name I pray. Amen 🙏🙏❤️❤️

[Aquinas in reply to light]

Hear, hear .

[Bluetop]

So sorry to hear this, what challenges you have had. I sincerely hope the lymphocyte infusions work and that the psychologist can help you with coping methods. Our thoughts are with you.

[beetle]

that is a tough pill to swallow for sure. I have no experience of transplant but it is heartwarming as usual to see all the support coming from members of this forum

I hope and pray that things turn around for you and that the hospital psychologist can help you deal with the challenges being thrown your way. It is very easy to start believing- and I’m sometimes in that boat too- that we are the ones that fall into the wrong end of the statistics. I always try and focus on other things happening in my life - a new granddaughter last evening for example but it is hard to concentrate on the good things when sleep is avoiding you at night

With the support and good will that is found in abundance here we should all fly high but we all recognise that it is not quite that simple. You have shown yourself to be a strong and courageous person so keep the faith and know we are all with you

Very best wishes, Jan xx

[JediReject in reply to beetle]

Congratulations little lady finally made an appearance, , trust mum and baby doing well x

[beetle in reply to JediReject]

hi Chris. Yes both doing well and her brother’s reaction was love at first sight! Long may it last! She actually arrived on my sister’s birthday so she is delighted too!

[JediReject in reply to beetle]

Fabulous, , family is everything at the end of the day no matter what as I came to realise some years back. Enjoy your precious time with newborn over this Festive period x

[Penny-10]

So sorry to hear this, wishing the higher dose works for you. Understandably your head is all over the place glad you are able to get help. Thinking of you and sending a hug and positive thoughts. X

[Aquinas]

I pray that Our Lord and The Blessed Virgin Mary will enfold you in their loving arms with comfort.

[Mostew]

sending you my best wishes . Such a difficult time for you. .not suprised you are stressed x

[Bullace]

Oh I'm so sorry you've had this news! I think reaching out to a psychologist is the right thing to do. It's all such a shock with all you've been through. All power to those donor lymphocyte infusions! Hilary

[mother2britton]

So Sorry to hear. Keep your positive attitude and I’m sure you will come out on top. Thank you for keeping us informed.

[PhysAssist]

Hi Jennie,

I'm so sorry to hear that lately things haven't been going as well as were hoped for you.

Do try to keep a positive attitude, and remember to consciously breathe slow and deep, and hold before exhaling.,..

Seeking help just shows good judgement and strength of character, neither of which is a surprise coming from you.

We are here with you virtually, and you are present continuously in our thoughts and prayers, so God bless and keep you, and get you moving forward to a better outcome than seems ahead right now.

Thank you for sharing, for your good grace and humor, and for being there for all of us MPN'ers when you're needed.

Best wishes and prayers for your road ahead,

PA

[ETinNYC]

In distressing news, you have always advised others on this forum to stay strong, seek support from those around them, and trust that their doctors will advise them on the best possible next steps.

Advice is often easier to give than to take, but from reading your posts, I think you're an incredibly strong woman and hope sincerely that you are able to follow your own sage advice. Don't give up!

We all will be hoping for some positive news for you. Wishing you all the best and sending you hugs from NYC. Xx

[Heidi-W]

Dear Jennie

So sorry to hear naughty Jak 2 on the rise again. How difficult for you after being so brave getting through the transplant last year. I really hope the donor lymphocytes can do the job of getting the numbers down again. I'm so glad you are getting support from the psychology team as your head must be spinning with all you've been through.

Sending lots of love from us all.

Heidi

[CanadaG]

Hi Jennie, I'm so sorry to hear this news. It must be very unsettling for you. I really hope the lymphocyte treatment goes well. Try to continue with your positive, brave attitude. It got you through the SCT process and it is inspirational to everyone on this forum.

[Jull2002]

Keep up the fight and good things will follow. Here to support you.

[Otterfield]

I would like to thank you all for your kind replies. It makes a huge difference to know that I am supported by my lovely MPN family.

I had 10ml of donor lymphocytes on Wednesday. It's too soon for the GVHD I've been warned about but I think I have some from my previous infusion (uncomfortable rash under my arm). I still have to wait and see, which makes for a fairly subdued Christmas, but I must be hopeful.

Hope you are enjoying a peaceful Advent x