Momelotinib

[Gipsy123]

Hi

After all the avoidable stress of getting bloods done at Guys, when I had my telephone con on Monday (- half an hour earlier than expected - good thing I was more or less ready) the momelitinib. Is doing the trick in terms of stabilising the Hb. Other numbers also OK.

So I’ll stay on the same dose- 200mg a day of momelitinib for a while. Consultant said she’d have a orescriotion made up for me that I could pick up from the O/P pharmacy any time in the next month.

Haven’t done this before: is there anything I need to know abt how that works to save similar frustration?

will also have next monitoring bloods taken at Guys- now I know where to go. The

Cancer Centre

Numbers are OK, ( apart from RDW and LDH which are always raised - that’s the myelofibrosis grinding away). But still feel fatigued snd have long bone pain.

Have a referral in place at RMH Sutton, close to where I live fir skin cancer check. So I’m taking as much care of myself as I can. Living on my own ( husband died in 2021 of a glioblastoma- totally unexpected). Life is tough.

[lizzziep]

I can’t tell you anything about picking the Momelotinib up but can tell you about my first visit to Guys, being from Yorkshire I don’t know London well, my friend was coming with me so we had decided to do some sightseeing while there.

After my consultation we asked at the reception where we could get a taxi, she told us we could get one near the Shard, but that’s where we want to go to we answered, she gave us a funny look and advised us to walk a few yards outside and look up. We did that and lo and behold there it was, no wonder she gave us a strange look, we just hadn’t noticed the massive glass building almost next door to Guys on our way in, we were concentrating on finding our way in to Guys.

[Gipsy123 in reply to lizzziep]

If you want a wonderful view for free, I once had a dental apt at Guys, way up on the 20 something floor of one of the towers- brilliant view of the Thames. And these days a riverboat trip from London Bridge station is also fun. Did that after my first apt back at Guys in December.