I went to Guys yesterday, saw Dr Faisal from Professor Harrisons team. He was really nice and explained things really well (unlike local doctor!) He was very thorough, went through my medical history and my family’s. Examined me and arranged for blood to be taken. There were major hold ups with their lab, they’d changed the system so everything was behind so no results. He told me everything we discussed he would talk over with Professor Harrison, and if necessary he would phone me next week. I already have a telephone appointment booked with him for January.
He explained about the risks of my MF transforming, because of the mutations I have, he said possibly In around 5 years I had a 20-25% chance of leukaemia, but 75% of NOT having it, and by 10 years the risk increased to around 37%. So I’m feeling a lot more positive. I’d be 80 by then (fingers crossed)!
Ridiculously he couldn’t access my records at my local hospital without permission from my haematologist, even though it’s all the NHS and I said it was ok. I had taken the print outs from my last few blood tests so he was able to enter those on my record.
I know there’s no guarantee I’m not in the 25% but my local doctor more or less said it was 100% certain and there wouldn’t be any particular treatment!
Dr Faisal also said there was no particular age restriction on SCT but it would depend on the individual and how it would help/affect them at the time.
So, I’m feeling a lot more positive about my future.
Anyway after the appointment my friend, who had gone with me, and I had a trip up to the viewing area in The Shard, it’s very close to Guys, it was a clear day so the views across London and beyond were incredible, as were the prices in the bar so we didn’t have a drink!
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lizzziep
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That is great news! Congratulations. You demonstrate how important it is to advocate for ourselves to ensure we receive the care we need. It sounds like you have a realistic understanding of your situation as well as a better sense of what your treatment options actually are. Finding a competent and caring MPN specialist makes a huge difference.
How frustrating to hear that you could not access your records at the home hospital. Ridiculous indeed! You are the person who owns your medical record. There is no valid reason to require your hematologist to release the record. That is your sole prerogative. In fact, if the hematologist released your record without your consent it would be a very serious violations of patient rights. Good for you for being prepared and bringing some of your own results.
Glad to hear you had a bit of fun along with the appointment. I often try to do that when I travel to Johns Hopkins in Baltimore.
So good to hear this news and that there are other great people on professor Harrison's team who are so knowledgeable to give us advice, help and reassurance. Am glad you have had such a good experience and follow up.
Morning I just wanted to concur my visit to Guys made me think this is how it should always be , though the usual inability to see other hospital systems is frustrating you feel more positive and individual.
I am so glad remain positive and think we are all so different we may be the exception not the rule apparently we are pretty rare to start with . L
You might like to consider asking the consultant next time what your life might be like even if you do not get leukaemia. One of the things I really enjoy is taking my friend's dogs for country walks and I asked how many more years that was likely with the progression of my myelofibrosis. Also do you have a figure for the amount of bone marrow fibrosis and what drugs might slow that
Fantastic news to hear. Of course I wouldn’t expect anything less from a world renowned MPN team.
Your sense of positivity is evident in your post, such a shame that your local hospital couldn’t state the above statistics and be less negative about age and BMT. It makes you question do they participate in any up to date research in their field. You could have been saved from a lot of unnecessary anxiety.
Just of note. If you or Guys deem it necessary, you can make a subject access request to view your medical records.
I love your comment about the Yorkshire war cry. Had a good laugh with my hubby about that.😂.
On another note. Did you have any issues with the LNER timetable? I’m going to London in a couple of weeks to see my daughter overnight. Just wondering about train cancellations!
The trains were on time. Grand Central going and LNER coming back. I booked seats as soon as I got my appointment date, with a disabled rail card it was £51.00 each return from Doncaster. Then I used an app called Seatfrog which auctions first class seats 24 hours before your train, so we travelled first class for an extra £15 going and £17 each coming back. Well worth it. Although my friend and I were the only ones not working on laptops both ways 🤣
Regarding medical records I had same problem & Guys could not view them . I am on MyCare charts app for my local hospital & added Guys Hospital App to that & now they can read my test results. Had to chase my local hospital to help do it 👍
Its great you got to Guys eventually, having a doc you trust is a very large part of it. Yes concentrate on the 75%. Treatments are changing quickly. I was just recently at the expert doc conference on MPN in New York and heard the latest including MF drugs and SCT. There are so many MF drugs and combos in trial its amazing and there was a talk from a expert transplanter, he said they transplant up to age 80 now and the age is rising all the time as are the success rates. I hope you can relax more now and enjoy the present. My policy is once I find the doc I am satisfied with and follow the best advice they can give me, I have done all I can do for now so put the worries aside and dont waste valuable time on the stuff we cant change. Sometimes easier said than done but we have to try.
Thank you for the update and I’m so pleased that you were seen by this great team and are now feeling more relaxed and positive. That’s really good news. I see this team too and I know that they are the best which really does help everything. X
Good news, what a roller coaster we experience with our condition....depending on who we see! I laughed about The Shard visit, a few years ago my partner turned sixty and a relative gave him a voucher for a meal at The Shard (£100). So off we went, fantastic view up the Thames. We had two courses (not the most expensive on the menu) and a beer each. The beer was £16 a pint and we ended up putting and extra £60 to the voucher to pay the bill....eye watering!! I am glad we live up North, it's much cheaper. Good luck with all of this.
Congratulations, such great news!! You must feel such relief. I hope you can keep them involved in your care. Btw, you really rocked the “advocate for yourself” advice. Katie
What do you mean by that? What thing thinks is 100% certain? "I know there’s no guarantee I’m not in the 25% but my local doctor more or less said it was 100% certain and there wouldn’t be any particular treatment!"
I see what you mean now, because I have the high risk mutations for progressing to leukaemia I could end up with that but might not, he seemed to think I would definitely get it. However when I told him what they’d said at Guys he agreed it was a 25 - 30% chance, but there’s no way of knowing either way. Hope that explains better.
My local haematologist did say that at first, but after I told him what the MPN experts at Guys hospital in London said about it being a low percentage that progress he agreed with them.
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MPN specialist Claire Harrison
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Feeling sad, upset, angry and let down after my BMB in NZ
