Hi everyone. I'm looking for a bit of help please.
I have PV, diagnosed in Jan 2017, and am 42 years old. Currently taking daily baby aspirin and venesections when required. My platelets have recently breached the million mark and my haem team have arranged an appointment to discuss treatment options for when my counts get to the magic 1.5 million.
I was told previously, in an offhand manner, that HU would be my only option when the time came but that was by a haematologist that said I would be fine until I was 60 and then might have to start treatment! I mentioned to my Macmillan nurse the other day that I would like to chat this over because, given my age, I feel that there could be a better option for me to try first, instead of heading straight to HU.
I have googled for information on treatment options but I thought that reaching out here might be useful too, as many of you will already have had such discussions and done research on treatments and I would be very grateful if anyone could let me know what options might be available in Scotland as an alternative to HU?
To be clear, this is purely so that I can go into this consultation informed about potential options and have a detailed discussion, advocating for myself, as I feel that HU as the only option is me being fobbed off with the easiest and perhaps cheapest solution. I will of course, listen to medical advice regarding these options during the consultation but I just want the haematologist to know that I'm aware of other possibilities and that HU for someone of my age could be more complicated in the long run.
If I need to, after that consultation, depending on the information they give me relating specifically to myself and my situation, I may want a second opinion, but I just want to know that all routes have been looked into before deciding on a course of treatment. That summarises it for me really - I need to know that other options have been discounted for a real reason, but have been considered.
I hope that all makes sense, and apologies for the long post! If anyone in Scotland or the UK can assist, I would be very grateful, thank you so much
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Skyehope
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Hi Skyehope, I live in Scotland too. I find Mark Drummond, nhs Glasgow or he sees private patients in Edinburgh and Glasgow, was my best option. I’m not sure who you are with at present but I found Mark very helpful and he takes a genuine interest in your case.
Hi Aime, how are you? Thanks for your reply. I'm currently seen in Inverness where there are no specialist in MPNs although I'm assured that they confer with Mark when they need to. I've seen you post before and if memory serves me, you don't live in Glasgow so, can I ask, did you request a second opinion to be seen by Mark? Please don't answer if you consider it a nosy question! The member of the haem team I speak to regularly is really lovely and very human and caring but I never really speak to consultants and when I do, they aren't MPN specialists. Thanks Aime.
Hi, I saw Mark as a private patient about 3 years ago and he rediagnosed me with erthrocytosis rather than pv. I recently asked his advice, by email, which he said I could do, as my iron levels are very low, no venesections for over 2 years. I’ve been feeling rubbish and asked my nhs haem at ARI if I could have a short course of iron. They said no but with gp acting as the middleman, Mark has said yes. I’ve been on tablets for only a week so far but feeling much better!
I don’t think there’s any harm in asking for a second opinion when you think things may be changing or you need further explanations from an expert.
I am interested in this thread because I asked my consultant (based in Larbert) just this week about seeing Mark Drummond in Glasgow. Like you, Skyehope, I was told they consult with him regularly about their patients and was told that I couldn't. However, I have been thinking I might like to see him privately - as Aime suggests. Did you see him privately, Aime?
While I have every faith in the haematology team at Forth Valley, I really just want a chat with an MPN specialist. I have post-ET MF, and am 58.
Hi, I have seen him face to face once and he was very thorough in the examination and blood tests. The nurses said they hadn’t seen such a large request for different tests before! He is a really nice person and down to earth.
The last consultation was just by email but he was happy to consult face to face or by phone. I would certainly recommend him. Hope you get sorted. Kindest regards Aime x😻😻
Hi, no I didn’t ask my haem if I could see him through the nhs. I was told I didn’t need any further tests/explanations, etc but I wasn’t convinced so I made the private appointment. My health insurance covered the cost of the consultation and tests as a one off but it is a costly journey for me as it’s about a 4 hour trip either way from home, so I had to stay overnight in Edinburgh.
This time when I sought his advice, my gp stepped in and spoke to my haem at ARI who, once he heard that I had sought advice from Mark, then changed his mind and said he agreed with me taking a short course of iron. ARI are very nice but because of Covid and what they consider a stable condition, I haven’t seen them face to face for about 2 years. They couldn’t give me a satisfactory explanation why my red blood cells/iron were sometimes decreasing or staying the same as the previous tests, despite not losing blood in any way.
Hi Aime. Thanks for your details about consults. I find my iron doesn't usually go higher than 5 and that's even without having had a phlebotomy for 2 years but my team say this is perfectly normal and just how they like it. They don't even like me taking a childs dose of iron every few days or so instead of daily, even thought it helps me with symptoms..... xx
Hi, yes that’s what I was told too but they are not the ones who feel ……. all day and wake up in the morning, still feeling ……! I am on a months iron and then to get bloods checked. I will let you know how I get on in 3 weeks time. Definitely more energy by the end of week 1 on iron. Take care, Aime x😻😻
I definitely agree about the iron deficiency symptoms. I got to the point that the iron deficiency symptoms were just as, if not more, bothersome than the PV symptoms. I got so low at one point that my HCT=32%. The doc did put me on iron then, which was also a yuck. Being unable to tolerate the iron deficiency anymore was a big part of my decision to initiate treatment with Pegasys. Once my HCT is stable on PEG the MPN Specialist will advise low dose of iron if it does not come up on its own. I am really hopeful that PTG-300 (Rusfertide) will also become available as it offers such a good treatment option for PV (rather than phlebotomy-induced iron deficiency).
Oh Skyehope after reading about your iron level I find it difficult to understand how you are coping.It’s just a suggestion.
Trains from Scotland to London are pretty fast . The price you pay to see a private heamo might well be off set if you travelled further afield and stayed over night. Maz might be able to help you with a list of consultants.
Thank you Wyebird. I think part of the problem is that when you get told something is normal you just feel you are exaggerating your symptoms and need to buck up! Partly why I feel I need to know more about treatments so that I am better prepared. Thanks for your reply.
That is my pet hate - being told that I’m exaggerating problems or pain! Also been told to buck up. That was the result of my very first haem appointment in 2012, my husband agreeing with them. Once all the tests came back, it was a case of “Oh, you have got something wrong with you!”😼😾😼😾🙀😾😿😼
Oh Aime! Being told to buck up is awful. The appt my husband managed to come to with me was my diagnosis one where the haem basically dismissed all my symptoms, told me I wouldn't need any meds or interventions until I was 60 and that all would be well until then. My hubby, understandably given what he heard, left the appt telling me it was fine then, there was no problem. That made me cry (as I'd researched already and knew there was far more to it) and he was baffled as to why I was upset! I think some haematologists need to research more about conditions they don't have much experience of so that they are better informed, and also, remember that their patients are in a time of uncertainty and often fear. Being brushed off and told there's no problem or to buck up is unacceptable nowadays xx
Totally agree! To me, it was like being told you’re just depressed, see your gp for anti depressants and it will be all ok! For me, I prefer to go to appointments by myself now, not because of Covid rules but I feel I can then speak my mind and be honest about any worries. I was also not asking questions because I was trying to protect hubby from the answers! He would rather not question things as he thinks if he buries his head, it will go away! I would rather get the true facts and then I can deal with it! But we are all different.
I totally agree about haems finding out more about rare conditions. I found myself doing the research and that’s when I came across this forum, thank god!
There most certainly are other options than HU to treat PV, particularly for someone your age. Many MPN Specialists prefer PEGylated Interferon to HU for patients under the age of 60. Some prefer it for all patients. There is a large body of research indicating that PEG-IFN is superior in preventing progression of PV into MF/AML. Here ae just a few links to information. there is a lot more out there.
These links are only a small part of the information available on treatment options for PV. There is also ruxolitinib, PTG-300, and other options in development. It is quite inappropriate for providers to only discuss one option for PV treatment with you. HU should be one of the options, but it needs to be compared to the other options available in order for you to make an informed decision. You are correct to think that there may be pressure to select the cheaper option (HU=$70/month, PEG=$4,400/month, RUX=$14,000/month). This has nothing to do with what is best for you. Your choice of treatment must to be driven by your treatment goals, preferences and risk tolerance as well as the unique presentation of your MPN. Your providers' job is to thoroughly review all of your options with you. Which treatment option to select is not your providers' choice to make. It is yours.
It is also your choice who your provider will be. If you wish to consult directly with a MPN Specialist, that is your prerogative. This is your right as a patient. There are ways to make this happen even when the system seems opposed to it. Here is a list of MPN Specialists. mpnforum.com/list-hem./ .
Others have made reference to Mark Drummand, who is on this list. He has an excellent reputation. If he is your choice, I would do whatever necessary to consult directly with him.
Hunter, thank you so much for this information. I will have a look at all the info in the links before chatting with the consultant. I am so grateful that you are so active on this forum and that you are not only so well informed yourself but that you take the time to help others gather more information to enable them to advocate for themselves. You are amazing, thank you! 😀
I see Mark Drummond privately in Edinburgh at Spire, he may want to see you for first consult and might do phone after that if preferred. He is not that expensive. He is best in Scotland and works close with Clair Harrison. In the Edinburgh area there is a shortage of Haems currently. It’s a good idea to have a expert Haem you can call on, he can also keep your local Haem on track. Most experts would prefer you try and avoid HU at your age I suspect, Pegasys is what they advise for younger patients. You may get it on the NHS but when I tried it in 2013 I had to pay for it but it’s much cheaper in the UK, around £100 a week, but you may get it on the NHS. I doubt you will get Rux on NHS unless you fail on the others, I got it on compassionate grounds as failed on Pegasys and itch a lot
Hi. I don’t have PV but I have ET CAL-R & I’m 41. I’m in S. Lanarkshire & I’ve been on Peg Interferon since Dec so it is being used in my area so maybe not a cost thing. I’m seeing my consultant face to face this morning to discuss HU as unfortunately Peg Interferon hasn’t worked for me Hope you get some answers for yourself x
Hi DoubleF79. Sorry to hear Peg IFN hasn't worked out for you. I have noticed that a substantial % of people get intolerable side effects using it. I hope you have more success with your next meds xx
Hi really interesting thread, good luck with your consultation Skyehope, sounds like you will be well prepared and informed when you go! Can I ask do you need a GP referral to see Mark Drummond, or can you book an appointment without? I am yet to see Haematology, & feel like I am being fobbed off tbh, I’d certainly book a private consultation if I could.
Hi Lynn. Thanks for your reply. It can be a struggle to see an actual haematologist rather than a team member but I would hope that you would at least see one in the appointment where you are given a diagnosis. I would say if you feel you need to see one then you should push for it. I certainly couldn't afford to have a private consultation so I just need to make the most of what the NHS offer, perhaps the same as you.
Hi Lynn, my GP did refer me privately but I was lucky to have health insurance which covered me for a rediagnosis appointment plus one follow up in order to get results. The referral is better because it gives Mark all the information re your case.
Good luck, keep insisting on what you want, until you get it!
HiThanks Aime, got my results from end May Hct now 50, and HB 163, RCC 5.47, have a tel consultation with GP this afternoon going to ask re referral to Heamatology again and if no luck will ask if she will refer me to Mark Drummond at Spire. Worth paying for imo! We will see 🙂
Hi I am 42 also and bee on HU for nearly a year unfortunately I have been very symptomatic to all the side effects, I'm meeting with Prof Harrison to discuss further .
Hi Blm230408. Thanks for replying. Are you under the care of Prof Harrison? Interesting if she put you on HU as a first choice given your age. I'm sorry to hear you are very symptomatic and I hope a solution can be found soon to help you feel better. Good luck.
Hi my local haematology dept put me straight onto hu due to my results and only just been referred to Prof Harrison as been waiting on more tests due to the rare gene
I was offered hydroxy as first choice and I said I didn’t want to take chemo pills and was immediately offered Pegysus. I hope you have this choice in Scotland. Good luck
Thank you Hopetohelp. I do wonder if HU is offered first as a cheap med but it makes me sad that money might be the cause of some people not getting the medication best for them...
Hi, thanks for the post.I found it very interesting for several reasons.
Firstly I too have PV but also ET.
High platelet count is more related to ET than PV. I also live in Scotland and have just started Hydroxycarbamide at the age of 48 with a platelet count of 1178.
I have been diagnosed since 2016 with ET and 2017 with PV. I have a cross over with both high red blood cell count and high platelet count. I've had at least 20 venesections, and am on 75mg Aspirin daily.
As I said I'm 5 years into this journey and at times its been pretty tough both physically and emotionally. I've never been offered or had any contact with what other people refer to as "My Macmillan nurse".
Maybe it is all down to the local NHS Trust and or a postcode lottery.
Hi Rob. At first, I was told I had ET but then, after seeing my rbc change, my diagnosis shifted to PV although a haematologist said that they prefer "MPN unclassified" as they can be interchangeable. PV by its definition affects both rbc and platelets (and more besides sometimes I think!).
The person I call my Macmillan nurse is the contact I have in the haem dept of the hospital whose care I'm under. I think he is classed as an advanced Macmillan nurse practitioner. He is the one who calls me to discuss my blood results or who I contact if I have a problem. I don't see or speak to an actual haematologist. He is very caring and kind etc which is nice to have in my regular contact. Perhaps your regular contact has a different job description to mine?
It can be a rough road can't it? And yet I always feel a bit of a fraud when I struggle because I don't have "proper" cancer.
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Hope you get some answers for yourself x 
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