Update and thank you for your support

[Otterfield]

I would like to thank everyone who replied to my post about the doubts my haematologist raised about my SCT. The wisdom and support here really does make a difference in helping me cope at this frightening and stressful time.

I have now had two conversations with my wonderful transplant nurse, who was surprised by my haematologist's comments. She has spoken to the transplant specialist and it seems likely that I will be having intensive debulking(?) chemotherapy before I go in for the treatment itself. He also thinks that increasing my Ruxolitinib to 25mg twice a day could be helpful. I also had a call from my local haematologist - I think she was shocked by how shaken I had been.

It seems that things are back on track but both my husband and I still feel shaken up and fragile, which makes us realise what a knife edge we are on these days.

So thank you everyone and I hope you can have a happy and peaceful Christmas, in spite of that scary cloud we all live under.

Best wishes, Jennie

[Inca]

So pleased for you Jennie,A Peaceful Christmas and hopefully you both can relax a little for a while.Very Best Wishes to you Both.Sally

[hunter5582]

Glad to hear you received some reassuring news. Your experience shows why the involvement of MPN Specialists is so important in our care. All the best to you as you move forward on your treatment. Wishing with a Merry Christmas and a happy New Year - one filled with peace and success in dealing with the MPN.

[Cja1956]

So happy to hear that you were reassured regarding your upcoming transplant. The stress and anxiety are very reasonable but I have faith that things will work out. I wish you a very merry Christmas and a happy new year. Best wishes, Cindy

[Wewo01]

Such better news! I know you must be relieved. I am sending you all my best and tons of positive vibes! Take care, Jennie and Happy Holidays to you and your hubby!

Kim

[pj1963]

Dear Jennie, what wonderful news! You must be feeling so relieved. Wishing you and your husband a very happy Christmas. x

[JediReject]

Pleased you're both feeling a little more reassured at what undoubtedly is a stressful time in limbo. I believe the debulking is used in certain circumstances to reduce the level of fibrosis (or tumour size in other cancers ) to give your SCT conditioning a head start. But I'm sure if it's part of your pre treatment plan it will explained in detail.

Wishing you both a peaceful Festive period.

Chris

[mhos61]

Hi Jennie, so pleased that your mind has been put at ease. What an unnecessary burden you and your husband have been put under, when you’re already understandably fragile.

I’m shocked that your haematologist is shocked by your reaction. It makes sense to me that most people would react in this way🤔.

Happy Xmas to you and your husband. Xx

[katiewalsh]

Thank you for your kind note expressing appreciation for what we all do for each other & letting us know how well things are turning out for you. I just completed a survey & said that this group more than anything else has been my salvation. Wishing you and your husband a happy Christmas & New Year. Katie

[KC63]

Hi Jennie, glad the experts were able to reassure you and SCT will go ahead. Having made the decision the last thing you need is doubt. Wishing you and your husband a Merry Xmas. Best wishes Karen x

[Wyebird]

Everything has been extremely stressful for you. Sounds as if things are now moving on. Do you have a timescale in mind for your SCT?

I do hope all goes well for the future.

Please keep us informed.

Hopefully now you can try to relax and enjoy Christmas best you can.

Sending hugs

[Otterfield in reply to Wyebird]

Thank you. No timescale yet, but I am seeing the transplant specialist in January and hopefully get some idea of when. Best wishes, Jennie

[runnerbird71]

Thinking of you

[Meatloaf9]

So happy that you received some reassuring news from your transplant team, hope it eases your mind some. Whatever decisions you make for yourself will be the Right ones, no doubt.What kind of a knife edge would you be living on if you had decided not to go forward with the SCT. It is terrible having to live with these diseases. I can see light at the end of the tunnel for you. Praying for you and success with your SCT. Have a Merry Christmas and only the Best for you going forward.

[Bluetop]

So pleased you have had better news and some of the professionals are working out the pathway for you. I'm sure the whole process must be so stressful. Best wishes for a Christmas you can enjoy.