Update and meeting the team.

[wendycu]

I’ve had lost of tests done over the past few months. I met up the the transplant team.

I’m looking at 5-10 years for a bone marrow transplant, they said it could be earlier, as I’m still working and I’m well enough they don’t want to do it to early. I will need to take year off work, (when the time comes) 4-6 weeks in hospital, 3 months at home - no cooking, no cleaning, no going out shopping, the only place I have to go is the hospital twice a week. (After transplant) It will be like starting my body to do things all over again like a baby. I will need lots of support for the year.

There was a lot to take in and I have a every thick book to read too.

For now I will still have my normal appointment as well as the transplant team ringing me every 3 months. As she classes it, ‘I am there family now.' And they will be keeping an eye on me.

My consultant wants me to try different medication for now to help with the night sweats, bone ache, swollen spleen and fatigue. Something else to think about.

[Otterfield]

It sounds like you have a great team looking after you and it must be a relief that you don't have to face an SCT just yet. You have described exactly what I will be doing in two weeks time. It's scary but there are a number of others here who have been through an SCT, some several years ago, some very recently. I have that thick book too.

I don't know what medication you are on but Ruxolitinib has kept me well for the couple of years I've been living with MF. It shrank my spleen and sorted out fatigue and night sweats.

Good luck.

Jennie

[wendycu in reply to Otterfield]

Hi, I’ve been in Hydroxy for 15 years and Anagrelide for 4 years. I have ET and MF, I’m sure it’s Ruxolitinib they are wanting to to try. I have been thinking it over and I think it is time to give something else a try. Good luck with SCT, I will thinking of you, please let me know how you are when you can.

All the best, take care.

Wendy

[ainslie]

On a positive note I understand transplants are continuing to improve so hopelly will be even better when your time comes.😀

[hunter5582]

It sounds like you have a great team to manage the MF. The plan to switch to anther med, likely RUX, sounds like a good plan as well. Hopefully you will find it an effective tool to manage the MF and maintain a good quality of life. RUX and the other JAK-inhibitors can be very effective.

All the best moving forward.

[Cja1956]

Hi, Wendy, seems like we have some similarities. I was diagnosed with ET in 2008 at age 52 and exactly 3 years ago I was told I had changed to MF intermediate 1 and would need a SCT within 3 to 5 years. Here in the states, they like you to be at intermediate 2. I am currently on hydroxyurea but I have tried Anagrelide , Ruxo, and Fedratinib. The only thing I didn’t get was the “thick book”. What is this book that you got? Is it something I can order? I’m really interested to see what else I can learn.

Wishing you all the best.

Cindy

[Otterfield in reply to Cja1956]

It's this:shop.bloodcancer.org.uk/pro...

I think it's also available as a download if you don't want it shipped from the UK.

[Cja1956 in reply to Otterfield]

Thanks, Jennie. I really appreciate it.

[Wyebird]

You have a lot to take in. It must be overwhelming. Nice to know someone is watching over you. Take care, good luck