Sadly lots of pharmacy-branded plastic stuff but I did get a couple of cute stress balls. Also, no vegan food?!?!?! I’m outraged! Not really, thankfully the Ferry Building is just a block away and has great bakeries 
4 Likes
Some conference freebies, which I’ll go through and see what information might be useful to share here. There was, after all, lots of yummy food at lunchtime but I had lost my appetite by then.
I’m processing all that I could take in today and will try to put it into words when I can, but I will respond to all the suggested queries I took to the conference. My dad asked how common it is for these gene mutations to run in families, seeing as he has 2 direct relatives with similar MPNs, and sadly there was no definitive answer.
It felt very intense to be around so many people in real life who truly get what living with these bloody disorders can be like, but in a comforting way as we share a mutual understanding—much like with those of us on here. Lots of comparing personal statistics and disorder acronyms, as you can imagine!
My brain and feelings are all full up so I’ll report back once I’ve recharged 
5 Likes
@Duncan if that is the size of your blood cells, no wonder Polycythaemia vera (PV) clogs us up 
No t-shirt for @Erica though I guess she could stand on all that paper to see into @CarolineL posh heated mirror with out the need to jump up and down 
Glad you had a thought provoking day, even if the food was hidden away
2 Likes
Hey there folks, haven’t forgotten your queries. In due time the conference organisers will send out copies of the slides shown in the various sessions, so I’ll be able to share any useful data then. In the meantime, I thought I’d share some notes that may be of interest that relate to MPNs. They’re a bit fragmented.
Firstly, I attended 3 sessions/lectures. The first one was from a locally famous cancer survivor, Stephanie Chuang, who set up The Patient Story so others could tell their cancer stories. It’s a bit like StoryCorps, if you know that, but for cancer. Her presentation was interesting but upon reading some of the information on The Patient Story website I noticed a few too many inaccuracies which put me off wanting to use it as a resource or share a link to it here. I’m sure the personal stories shared on there are fascinating. I think there’s only one Myeloproliferative neoplasms (MPN) survivor’s story.
Session 2 was Cognitive Concerns and Cancer with Dr Charles Windon of UCSF Memory and Aging Center (a fancy research hospital in San Francisco). Dr Windon spoke of his work studying how cancer survivor’s memories are affected by cancers and their treatments.
Chemotherapy causes neuroinflammation in the central nervous system. Neurons, which carry brain signals, can become injured from neuroinflammation. The body-brain barrier can weaken or doesn’t stop chemotherapy from entering the central nervous system via the brain. This affects memories and recalling them.
Ginkgo biloba shows benefits to memory/cognition impairment from cancer. Melatonin also helps, as does improving sleep generally.
Session 3 was MPNs with Dr Jason Gotlib of Stanford Cancer Institute (a fancy research university in the San Francisco Bay Area). Dr Gotlib shared so much information that his session ran over! He’s written over 200 scientific papers about blood cancer and is considered a world expert. I’d never heard of him but a fellow Polycythaemia vera (PV) survivor I chatted with at lunch is his patient and raved about his expertise in a slightly annoying way.
95-98 % of people with Polycythaemia vera (PV) have the JAK2 gene mutation. 50-60 % of Essential thrombocythemia (ET) and MF survivors have the JAK2 gene mutation. JAK2, CALR and the many other blood cancer-related gene mutations are known as driver mutations, as in they promote cancer development. JAK2 is by far the most common driver mutation.
Ropeginterferon treatment is better over time at molecular response on JAK2 than hydroxyurea. Less than 5 % of patients on interferon needed to stop due to side effects.
Some patients taking hydroxyurea can have iron added back in if anaemia is an issue (thank goodness!).
Ruxolitinib treatment is more effective at relieving fatigue and achieving overall benefits than hydroxyurea or interferon. It’s also better for complete response and event-free survival from thrombosis, haemorrhage, transformation (from one cancer to another), and death.
A new medicine being trialled, rusfertide, helps eliminate the need for phlebotomy and improves symptoms. Also better than others at eliminating iron deficiency as fewer bloodletttings are needed. It has a possible increased risk of basal cell carcinoma. May be introduced as treatment within 2-3 years.
A treatment currently called INCB160058 affects and inhibits only mutated JAK2, not all JAK2 gene mutations. No information about its medical approval.
In the womb, a foetus’ spleen makes its blood, whereas once born the bone marrow takes over producing blood.
Essential thrombocythemia (ET) can morph into Polycythaemia vera (PV) and can be considered masked Polycythaemia vera (PV). However, Polycythaemia vera (PV) won’t change into Essential thrombocythemia (ET). Polycythaemia vera (PV) can transform into Acute myeloid leukaemia (AML), or into Myelofibrosis (MF) and then into Acute myeloid leukaemia (AML), over 20 years.
3 Likes
Interestingly, from what Dr Gotlib said at the conference, it sounds like Essential thrombocythemia (ET) can transform into Polycythaemia vera (PV) first before transforming again to Myelofibrosis (MF). Perhaps you’ve had masked polycythaemia vera all along and it’s now progressing to myelofibrosis? Don’t quote me on that!
Apparently it can take up to 20 years to transform fully, in which time imagine all the progress in treatments. Dr Gotlib very much made it sound like Polycythaemia vera (PV), Essential thrombocythemia (ET) and Myelofibrosis (MF) are all very similar, almost like they’re a progression of the same disorder. We’re something like blood brothers, @Jimbo165!
2 Likes
So @clickinhistory, the conference was very US-centric as you can imagine and the systems here for diagnosis and referral to cancer treatment are sadly too dissimilar to how it works in the NHS to compare.
What is similar though is the variability in connectedness of communication between our GPs and haematology teams. Shouldn’t there be a protocol in place for being referred for tests to get diagnosed and then starting up treatment? I remember when I had a cancer scare many years ago and the NHS objective then was to be referred and seen by a specialist within a fortnight. I imagine that isn’t the case anymore.
3 Likes
Have a look for further details in my notes above @CarolineL, but it does seem like there are current and upcoming medicines that are more effective than hydroxyurea, particularly ruxolitinib.
2 Likes
Had a look for any information about itching for you @berylsmart, and somewhat ironically I started experiencing it myself over the last week.Typical! @Rammie18 wisely pointed out it can be due to anaemia that we are prone to, and lo and behold I have very low ferritin, so definitely recommend you get that checked out in case that’s the main cause of itching. Sadly I didn’t find any info at the conference about the itchiness, but it sounds like it may have decreased for you after your dosage change. Hope it’s stayed away!
2 Likes
Dear @Liz59, unfortunately I didn’t find any specific information about hydroxyurea dosage at the conference. From what other Myeloproliferative neoplasms (MPN) survivors have mentioned around this forum dosage does seem so variable. That makes sense to me—our treatments should be personalised according to our needs and symptoms.
One aspect I think is similar for us all is that the dosage is higher and/or more frequent according to how high-risk our disorders are for us and how high our blood cell numbers are at diagnosis. I’m at high risk of clotting due to my previous heart attack, but had relatively low elevated red blood cells and platelets at diagnosis, so I take a 500 mg hydroxyurea every day. My haematologist says this is a low dose. Have a look at the notes from the conference I shared above, you might find some interesting factoids!
2 Likes
Dear Duncan,
It has improved slightly, but I will ask about this at my next appointment. Thank you very much.
Beryl
2 Likes
You’re more than welcome. I hope some of those tricks that were recommended by Gemma, the Blood Cancer UK nurse, and others can help. Actually, I just remembered that someone at the conference who also has Polycythaemia vera (PV) said his only symptom was terrible itching and that he takes cold showers for it! No thanks, but I guess if it helps…
1 Like
The itching everytime I bought it up was always never discussed like it was the least of my problems but to me it was the main problem. Its seems insignificant in the fight of keeping platelets down and haematocrit level stable which from a medical standpoint was priority no. 1
Thankfully: treatment has helped (touchwood)
2 Likes
Why doesn’t that surprise me?! It’s rubbish that the itching was never discussed—doubly irritating! The thing is, these ‘lesser problems’ can send someone bonkers, having a constant or frequent irritation, which presumably is of interest to doctors?!
Something I remind myself when I feel like I’m being overly dramatic about the littlest symptom is that our entire set of symptoms, medicine side effects, random stuff, all this is within the remit of our haematologist’s care. They’re doctors, their specialist job and presumably their passion is to tend to our illnesses! If their treatment causes a whole new symptom then that needs treating too.
I know you know this stuff, I’m just moaning a bit. I’m really glad your itching has reduced, now I can imagine how that can feel!
2 Likes
Hi Duncan. Thank you so much for your detailed notes, for passing all this information on and for getting our questions answered - it is much appreciated.
It’s really useful information to know and whilst Ruxolitinib seems to have some potential unpleasant side effects as well, overall it sounds the lesser of two evils and seems to treat Polycythaemia vera (PV) more efficiently. I suspect that it is more expensive which is why the NHS will understandably not offer it as a standard, but it’s certainly food for thought and gives me something to work with.
Interestingly, my headaches have all but disappeared - just the odd very mild one as opposed to a mild-medium headache per day. This is largely due to the fact that it transpired that I needed distance vision glasses and so I think a lot of the headaches were caused by eyestrain (not helped by the fact that I am an office worker starting at a screen for hours per day!) I also think being generally less stressed and anxious is helping as I adapt to my new ‘normal’, and that I haven’t had a venesection for almost 7 months (touch wood!) so my iron reserves must have rallied too. I’m very fortunate that I am generally feeling very well and aside from taking a blood thinner twice a day I am pretty much living normally - another reason why I am unwilling to go onto Hydroxycarbamide!
Next month will be a year since diagnosis so I’m still conscious that it’s early days and not to rush into any decisions health wise whilst my body recalibrates and finds its new equilibrium. As I’ve said, I think all too often Doctors throw medication at the problem and whilst I appreciate that this is sometimes necessary I don’t always think it’s the right path for everyone so I’ll continue to challenge and ask questions about my own health!
3 Likes
Good evening @Duncan, and everyone else, and thank you for your kind reply. I’ve recently been informed by my consultant that I haven’t progressed to MF, or Secondary MF in my case, but she has never mentioned the possibility of my Essential thrombocythemia (ET) transforming into Polycythaemia vera (PV).
I do know that I feel as though I am “getting worse” but I don’t know how much of that is down to my current diagnosis and treatment (Peg Interferon), my underlying comorbidities, or simply my advancing age (59 next month)!
One thing I definitely do know for sure is that I feel the cold a lot more now than I ever did before my heart attack back in September 2017 and also that my fatigue levels seem to be more debilitating than ever.
Fortunately I still have my slightly (okay - massively!) warped sense of humour to keep my spirits up.
@Duncan, I hope that you have had a wonderful and generally informative time at the conference in California.
As always, take care, stay safe, be kind to yourselves and keep on smiling.
Jimbo165
3 Likes
Aw Caroline, you’re most welcome. Thank you for inspiring me to be more proactive about all this, especially learning more about hydroxyurea.
Ruxolitinib really does seem like the way forward. Sitting with other Myeloproliferative neoplasms (MPN) survivors during lunch gave us time to compare notes, mostly stuff about our red blood cell and platelet counts and what medicines we take, and a few spoke highly of taking ruxolitinib and not needing phlebotomy.
I agree—I think its cost is likely prohibitive, even through the NHS which can seem sort of free for patients but obviously is still paid for through taxes. It’s near impossible to find out costs of treatments and medicines on my health insurance here, but it’s thankfully heavily subsidised by the Affordable Care Act AKA Obamacare and thus is usually affordable. For example, my hydroxyurea costs $33 for 100 pills, the equivalent of just 26p each. Phlebotomy, however, costs $329 each time—that definitely motivates me to keep my haematocrit lower! We changed our health insurance this year considering my Polycythaemia vera (PV), so treatment should be cheaper overall going forward 
I’m really glad your headaches have mostly passed. Funny that they may simply have been caused by eyesight! What a relief. I wear glasses for similar reasons to you and have noticed greater eye strain since my diagnosis so I’ll have to get that checked off my never-ending list of healthcare appointments at some point. Eye tests here aren’t a case of popping to a high street optician (as they don’t exist), you have to see an optometrist at great expense.
It’s especially great to know you haven’t needed phlebotomy for so long, that’s excellent! You’ve really ‘normalised’ over a relatively short amount of time. Long may it last. I hope you have a great celebration of living with Polycythaemia vera (PV) so successfully next month, maybe it’s time for a fancy meal!
Thank you again for your motivation, Caroline. Team Polycythaemia vera (PV) FTW!!!
2 Likes
It’s my pleasure, @Jimbo165. Glad to be able to find out some useful stuff. It was really powerful being around others in person who know what we’re living with. Makes me feel less alone with it all.
So your Essential thrombocythemia (ET) is still Essential thrombocythemia (ET) and hasn’t transformed?! That’s great news! I mean, obviously it’d be better not to have any blood cancer at all. Now I suppose you want to figure out what’s making it feel worse.
Funnily enough I’ve been feeling the cold a lot more recently too. I also feel the heat, when it’s hot, it makes me feel sluggish. I put it down to the hydroxyurea I take, but this week I found out I’m anaemic and wonder if that affects how our bodies moderate our temperatures? Do you know if your treatment has brought on anaemia for you? Might be worth checking as anaemia has a whole range of side effects, like headaches and muscle weakness and so on.
As for the fatigue, have you found anything helps at all? After I started doing yoga a couple of times a week it really helped with my energy levels. I follow yoga sessions at home on my TV, so no shame about group classes or being a sweaty mess. Getting daylight into my eyes early in the mornings helps too, and definitely improves my sleep routine.
Keep that humour coming, @Jimbo165, it’s good for you and us!
2 Likes
Hi @Duncan, sadly yes, I strongly suspect that anaemia is also an unwanted bedfellow these days as I had the pleasure (such an unwanted one!) of undergoing some B12 loading injections late last year, 6 of them in 12 days, with 1 Pegylated Interferon jab and 1 Covid booster jab within the same time period. I felt very much like I had fallen on a hedgehog - and more than once!! I have now booked my next B12 jab for next month as I now due one every 3 months for the remainder of my time on planet Earth.
On the fatigue front I think that I am just too lazy now! 
To be fair, my consultant keeps telling me that I should do more exercise but after a day at work I am usually too knackered to do much of anything else, especially once housework and food preparation and other Domestic Goddessing type of chores have been completed! It is a shame as I used to be fairly fit and active, with a box of swimming and sports awards lurking around the house somewhere! I strongly suspect that with my heart attack having taken about 20% of my heart’s capacity away, and then what’s left of it, pumping dodgy and (slightly thick (explains a lot!)) iffy blood around the system, goes some way to forming an explanation to my fatigue and lethargy.
I think that not only would I, but my nearest and dearest to, would be lost without my humour! It is also my health, both mental and physical, barometer too.
Take care and stay safe.
Jimbo165
3 Likes
Ha I know what you mean about laziness, as I sit here thinking I really should get out for a stroll or at least do some yoga or vacuum but actually resting feels like a better option right now
Having also had a heart attack I’m sorry to hear of how yours has affected your heart. I can empathise. Glad we both survived!!! Sounds like yours was quite scarred. I was surprised to learn that we can improve our heart health even after scarring to help it regain its muscle strength, so don’t give up hope on improving that 80 % capacity. I bet it still has muscle memory from your swimming days! Swimming is meant to be excellent exercise, pity I hate it.
So you have B12 injected! Is it a high dose? I only ask as I try to cram as much Marmite into my diet as I can to offset my lack of B12 due to being vegan. Had lashings of it on toast this morning, actually. You can get B vitamins in multivitamins too, and meats, eggs and dairy are high in them of course. Funnily enough, alongside my ferritin test which showed anaemic levels I was also tested for B vitamins and they seem normal. I wonder if you can eat enough Marmite to not need the B12 jabs? Thank goodness for Marmite, imagine that being given on the NHS?!
2 Likes
So interesting to hear you’ve both have heart issues… was only last October that I had my 2nd heart attack. Typically normal heart functionality is around 55% and after my first heart attack it when down to 5% but after rehab and doing everything I was told and taking in I was just turning 40 I managed to get it back up to 45% but 2nd one thankfully was dealt with sooner so only dropped to 30% was on course of having a defib fitted but again managed via rehab and taking it easy to get it up to 40%. I’m really nervous about my survival chances of having another one… think I fear this more than the cancer really…
Regarding Ruxolitinib… I know its only been cleared in the England despite it being available in Scotland and Ireland but according to a webinar I saw last year it’ll only to be allowed IF hydroxycarbamide hasn’t worked so it won’t be a first treatment option.
4 Likes