Prof Harrison appt - done and went well!

[Otterfield]

Thank you SO much to all who responded to my post about how nervous I was about my appointment with Claire Harrison. As you all said, she was lovely and very encouraging about how I am doing. We discussed SCT at length and my fears about it. There is no rush to have it but we agreed to start the initial tissue typing etc, leaving the decision open for now. She also mentioned the possibility of being involved in future drug trials.

I am now totally knackered but encouraged, though still scared about a possible SCT!

Best wishes to you all, Jennie

[Cja1956]

I know how you feel. In 2019, as soon as my results came back that showed MF, my hematologist started talking about an SCT. She made an appointment for me with an SCT specialist. A month later my husband and I were in his office. He spent an hour and a half with us and answered all our questions. Then he put me on the donor list. They also sent a test kit to my sister but she wasn’t a match. If and when the time comes, I’m still not sure if I have the mental or physical strength to go through with it. There are so many variables and I’m trying to learn as much as I can now.Anyway, I’m so glad you had such a great experience with Dr. Harrison. I knew you would! 😊

All the best,

Cindy

[socrates_8]

Hey Jennie...

Glad to hear you're feeling a tad relieved at least... As you say, there's no rush, so why not cross that bridge, when & IF? it comes...

Best wishes

Steve

[hunter5582]

Very glad to hear that your visit went well. It is a real blessing when we can find a provider who is an expert in the science of treating MPNs and skilled in the art of healing. It sounds like you have a good plan in place. The opportunity to participate in clinical trials would be worth considering. There are some very promising things being looked at. Perhaps you can be on the cutting edge of treatment.

All the best my friend,

[Wyebird]

Brilliant, are you going to remain u fee her? I think you have more chance of being involved with drug trials if you do.

[Otterfield in reply to Wyebird]

I will remain under my local haematologist but will have another telephone appointment with Prof Harrison in 4 months. That feels like the best of both worlds for me, especially as my haematologist is so good (and willing to admit it if she doesn't know something).

[Wyebird in reply to Otterfield]

Win win all round. Your heamo will learn from prof H. Thrilled with the outcome . Xxx

[DJK12]

Glad it went well. Your nerves must have been jangled before and also after the call but in a different way. Having a plan, although scary, mapped out by such an expert is brilliant and possible drug trials on the horizon gives hope to the rest of us - so thank you for sharing. Diana

[Bluetop]

So glad it went well -and that the possiblity of options are emerging for you.

[katiewalsh]

Hi Jennie, this is great news! And as Steve said, no need to worry about SCT right now. The good news is that it may be an option for you. You’re actually fortunate about that. But that doesn’t mean you have to do it. How wonderful that you’ll be talking with her again. Be well! Katie