Thank you for this @clickinhistory, although I’m still awaiting news/date for my endoscopy, so this is a most welcome intervention from you, our Media Consultant.
Take care and stay safe.
Jimbo165
Practice makes perfect, I say! This forum can be a bit like group therapy at times I think, but is free and nice and open. Bonus!
Commenting here has been so helpful. Sharing stuff with people who really know how this all feels is so supportive. I’m glad you’re here @Jimbo165 , you brighten any conversation!
@Jimbo165 you were lucky, Big Dave from Dynorod was offering to do it, then he realised it was the day after Melton Road’s Curry festival and didn’t think his tum could take it 
Oh I totally forgot to note here the one thing that really surprised me and gave me hope at the conference. Dr Gotlib, the Myeloproliferative neoplasms (MPN) specialist, kept talking about there being potential for us to have remission from MPNs?! I’ve never heard any specialist mention that—it seemed like having chronic blood cancer would be for life and remission was for others with different types of cancers. He did say that the science is not quite there yet though, and who knows when that will be. Still, it’s something optimistic to hold onto 
Hello folks, thought I’d share a link to the LLS Virtual National Blood Cancer Conference happening on Saturday September 14. LLS is the closest the US has to Blood Cancer UK and they held the in-person conference earlier this year that I attended and found very informative.
As this is online, perhaps it’s of interest to my fellow British survivors to attend. It’ll be 5 time zones behind the UK, so will start at 4:30 pm GMT. To register and find out more information about the various sessions, follow the link above.
Sessions include (American spellings alert):
- Adult Acute Lymphoblastic Leukemia (ALL)
- Chronic Lymphocytic Leukemia (Chronic lymphocytic leukaemia (CLL))
- Lymphoma High Grade
- Myelodysplastic Syndromes (Myelodysplastic syndrome (MDS))
- Waldenström Macroglobulinemia (Waldenström macroglobulinaemia (WM))
- Treatment Decision Making: How Do I Navigate My Options?
- Transforming Cancer Care with Integrative Oncology
- Adult Acute Myeloid Leukemia (Acute myeloid leukaemia (AML))
- Chronic Myeloid Leukemia (Chronic myeloid leukaemia)
- Hodgkin Lymphoma
- Lymphoma Low Grade
- Multiple Myeloma
- Myeloproliferative Neoplasms (Myeloproliferative neoplasms (MPN))
- Treatment Decision Making: How Do I Navigate My Options?
- Transforming Cancer Care with Integrative Oncology
See you there, well via a screen! I’ll share any notes here afterwards that seem relevant, with a focus on Myeloproliferative neoplasms (MPN).
Thanks, @Duncan! I have signed up for it. ‘See’ you there!
Oh how excellent, you will indeed @JanetF!
See you soon, those attending the virtual blood cancer conference 
Hope the conference app is working for anyone watching. It’s not quite so interactive as I thought it would be, or at least not on my ancient laptop!
Here are some links that may of be interest:
International Waldenström’s Macroglobulinemia Foundation: https://iwmf.com/
Myelodysplastic Syndromes Foundation: https://www.mds-foundation.org/
Graft-versus-host disease Alliance: https://www.gvhdalliance.org/
Adolescent and young adult patients: https://elephantsandtea.org/
Well that was a little frustrating. Were you able to watch @JanetF?
For me it was like tuning into tiny live stream videos on a basic website with little way to engage other than watch along. I thought it might be more like a Zoom call with messaging included. Hey-ho!
Unfortunately, the Myeloproliferative neoplasms (MPN) session had a shaky wifi connection, many audible intrusions, and then cut out before the doctor finished their lecture.
I’ll add here later any notes I managed to pick up about MPNs.
Hi, @Duncan! No, it wasn’t just you! It was so frustrating, wasn’t it? There was so little about Polycythaemia vera (PV) in the session on MPNs and what with the presenter’s dog making all that noise in the background till she eventually let him in, her phone beeping and then her connection disappearing and the poor LLS woman having to desperately try to fill the gap before it was finally obvious that they weren’t going to get her back… what a disappointment. I said as much on the evaluation form.
Which morning session did you attend? I opted for the integrative oncology one and hoped you had chosen it as well, as it was really interesting and the presenter was good.
Yes, I was surprised that it was so non-interactive. The advance organisation was very efficient and they were juggling a lot at one time, but I was watching it on my iPad in bed because it’s very late here, and it didn’t all fit on the screen and there seemed to be no way to adjust it so that it would, which was really frustrating.
Oh I’m glad it wasn’t just me @JanetF, but it was quite a missed opportunity to communicate difficult information clearly. I ended up watching on an iPad like you, it wouldn’t open at all on my (admittedly ancient) laptop! Nice to know we were both there together 
We watched the Treatment Decision Making session earlier which was pretty helpful from a US point of view as it’s so utterly Byzantine figuring out how treatments are decided here, or it is for me as a Brit who’s still completely confused by health insurance here!
Your session sounds great! If they share any slides with you I’d be fascinated to see them. I’m just making sense of notes I took before that Myeloproliferative neoplasms (MPN) doctor dropped off 
Hi again, @Duncan! Yes, it was definitely a missed opportunity, but it was nice to know that we were there together! They may well send a link to all the presentation slides to all participants, I think, but if they only send us the ones that we attended, I’ll find a way of getting the integrative oncology ones to you. It really was excellent and she covered a lot in the hour. Actually, they may upload all the presentations as well as the slides to their website, mightn’t they? That would be good!
So I attended 3 sessions/lectures from the virtual blood cancer conference.
The first one was from The Patient Story who spoke at the in-person conference earlier this year. I was heartened to hear her acknowledge how those of us with chronic blood disorders don’t always get ‘seen’ like those who have acute cancer treatments, despite us having to live with them for life without potential for remission or cure. The second session related to US cancer healthcare stuff which isn’t that relevant here as you have the wonderful mostly free NHS.
The last session I attended was MPNs with Dr Ellen Ritchie of Weill Cornell Medical College in NYC with poor wifi that cut out before she finished her lecture. Anyway, some notes for those interested in Essential thrombocythemia (ET), Polycythaemia vera (PV) or Myelofibrosis (MF):
First goal of Myeloproliferative neoplasms (MPN) treatment is to reduce risk of arterial and venous thrombosis and bleeding. Thrombosis can be a fatal event.
Second goal is to reduce risk of progression to myelofibrosis or acute leukaemia.
Risk of developing MF for Polycythaemia vera (PV) patients after 10 years is about 5 %, 15 years about 10 %, 25 years about 25 %. Risk of Acute myeloid leukaemia (AML) 2.3-8.7 % after 10 years.
Risk of developing MF for Essential thrombocythemia (ET) patients is about 4.3 % over 57 months. Risk of Acute myeloid leukaemia (AML) is 0.7-4 % after 10 years.
Those with MPNs have an increased risk of adverse cardiovascular outcomes.
Traditional cardiac risk factor ‘scoring’ for treatment might not be so effective for Myeloproliferative neoplasms (MPN) patients.
Controlling hypertension, hyperlipidemia, smoking, kidney disease, hyperuricaemia, obesity and cachexia will help moderate cardiovascular risks.
Data shows benefit of aspirin for all Polycythaemia vera (PV) and high-risk Essential thrombocythemia (ET) patients.
Management of elevated haemoglobin and platelet counts with cytoreduction for Polycythaemia vera (PV) and high-risk Essential thrombocythemia (ET) patients only.
Polycythaemia vera (PV) patients should have phlebotomy if needed to keep haematocrit below 45 % which significantly lowers risk of cardiovascular events.
Drugs for Polycythaemia vera (PV) (in US):
Hydroxyurea
Ropenginterferon
Ruxolitinib
Rusfertide (possible FDA approval)
Drugs for Essential thrombocythemia (ET) (in US):
Pegylated Interferon
Ropeginterferon
Ruxotilinib
Bomedemstst (LSD1 inhibitor)
Drugs for MF (in US):
Drugs already approved for MF are JAK2 inhibitors.
First drug approved was ruxolitinib
Eligibility restricts patients who have significant neutropenia, anaemia or thrombocytopenia.
Fedratinib shows efficacy in patients for whom ruxolitinib failed.
Momelotinib is drug of choice for MF patients with anaemia.
Pacritinib also being tested.
Drugs in clinical trial (in US) for MF treatment alone or in combination with JAK2 inhibitor:
Ropeginteferon
Pelabresib
Nivolumab
Selinexor
Sotatercept
Luspatercept
Jaktinib
Parsaclisib
Zinpentraxin
Imetelstat
AVID 200
INCBO53914
Azacitadine/Decitabine
Sonidegib
Navitoclax
Navtemadlin
(are these medicine names or orc characters from Lord Of The Rings?!)
Great post and thank you for taking the time in posting an update!
Much appreciated
Started to think that maybe… just maybe my two heart attacks were due to the covid jab! Or maybe a combination!
Aw thanks @Rammie18, it’s my pleasure to share. Just wish the session had better wifi and the Myeloproliferative neoplasms (MPN) doctor got to finish! I’ll share any further info if they send out slides from the lectures. Still no mention of potential cures/remission, but I know research with CRISPR and MPNs is ongoing
As for your heart attacks, I’m just so glad you survived them to be here! From what I understand, bearing in mind I’m not a doctor, I didn’t think the vaccines could cause cardiac issues beyond palpitations and a racing heart from our body’s immunities reacting to the vaccines?
For what it’s worth, I had the new Pfizer-Moderna COVID-19 and trivalent flu vaccines a couple of weeks ago and had such a strong immune response that I was in bed the next day with flu-like symptoms and a slight fever! That’s not happened previously, but I’ve had them at different times before, so I’ll be taking them separately again next year. Are they out there too? If you get them I’d say do it on different days 
Perhaps too personal a question here but did your cardiologists explain what triggered your heart attacks? Mine was caused by a blood clot, which back then no one mentioned being potentially due to an Myeloproliferative neoplasms (MPN), but seems to make sense now like a lightbulb flashing!
Lovely thank you @JanetF, I’ll keep my fingers crossed that they upload their presentation stuff and will also share accordingly. Share and share alike, as they say. Actually I’ll email LLS about that, now that I come to think about it!
Hi, @Duncan! Yes, share and share alike is a great motto! 
Thanks for thinking to write to LLS, though - hopefully they will make all the presentations available. Wishing you a happy Sunday!