Hi. Am on the rollercoaster of fear and doubts re proposed sudden change of management of my ET.
However, resulting from the brilliant and heartfelt advice on here, I have pursued the matter of seeking out a consultation with a leading specialist. GP certainly agreed with my concerns and as of this morning, hopefully my referral to Manchester professor is in progress for a second opinion. I’m told by his secretary that I should not have to wait long.
It makes a great deal of sense to see someone with expertise and has seen many patients with this very specific disorder.
Many thanks to you all for your support.
To be continued.
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Peachjoy
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Hello peachjoy - well done pushing for a referral - I’m staying put for now, but have Christies Manchester as my 1st choice if I feel I need to change.
Hi amhann,Thank you, now I’m in the waiting stage…
I really like my local haematologist, and may well continue my treatment with her, maybe following the guidance from the ET expert.
She has previously admitted to me that I put her in a quandary.
The reason for my pursuit of expertise is because my haematologist says my treatment must change because of the protocol statements say they must, purely because of my age. (No reference to any specifics about me or my particular blood profile).
I’ve come to realise that my anxiety is because this is a decision for the rest of my life. If it was just a course of treatment for a set period, then my fearfulness would not be quite so high.
I’m happy to let you know any outcome after my consultation at Christies.
I am glad that you are seeking a second opinion from a MPN expert. I would suggest maintaining that contact going forward. This is precisely how I manage my MPN care. I see a MPN Specialist at Johns Hopkins, about 2 hours from where I live. This doc consults with me and advises about my care plan. I also have a wonderful local hematologist who manages my ongoing care. he is a great doc who does not put his ego before my care. He also adds his input and respects whatever decisions I make about my care plan.
The quandary that your current hematologist finds herself in is a matter of perception. Most protocols recommend initiation of cytoreduction at at 60. Note that this is a recommendation, not a mandate. There is no "must change". At most it is a "should change". Doctors often have to practice defensive medicine and follow protocols, particularly when they do not have the experience/expertise to do otherwise. It is a very nuanced decision to factor in the individual patient profile.
Do note that some protocols, including the British Society for Haematology have shifted the definition of "high risk" to age 65 for polycythemia vera, I have not seen this same modification for ET, but it would be worth asking about.
‘High risk’: age ≥65 years and/or prior PV-associated arterial or venous thrombosis (GRADE 1A)
‘Low risk’: age <65 years and no PV-associated thrombotic history (GRADE 1A)
Ultimately it is up to you to decide. Doctors consult and advise. Patients decide. You doctor(s) may recommend a course of treatment, but there is not a "must" involved. Your decision will be made based on your treatment goals, risk tolerance and preferences. Your decisions should be based on facts, not on fear.
For what it is worth, I have been very pleased with my response to Pegasys. I held off for a long time, not starting until I was nearly age 66. I never used my age as a criteria. Neither did my MPN Specialist. It was based on my HU-intolerance, iron deficiency intolerance, actual symptoms, and genetic profile. I made the decision based on achieving better symptom control and reducing my risk of MPN progression.
Please do let us know how your appointment with the MPN Specialist goes. I am certain that you will make a good decision for yourself once you have reviewed all of the facts and options.
Hunter, thank you for sharing your own circumstances with me/us.I must thank you in particular for your guidance to pursue this expert consultation.
What you told me made so much sense, tonight I feel a bit better for having obtained the go ahead to arrange to see the Professor.
I feel calmer knowing that his expertise will guide me in the right direction, what ever that entails . Deep down I know that I will follow the advise, going against it would give me more anxiety.
I would very much like to do something similar to you, have the expert guide my treatment, and maintain regular contact with the haematology team ive known for 16 years.
You are absolutely right about doctors having to follow protocols to protect themselves…that is the world we now live in.
I’m happy to share here what happens next, as I’m sure there are others in the same position, and certainly there will be more of us.
Hunter as usual very I formative, which I find extremely helpful. Interesting information about PV and > 65. I have PV and am 65 and there has been no mention of change of protocol. I've read elsewhere about >65 where haematologist wants to change from venesections. I'm still on venesections and aspirin. My Ferritin is 3 or 4 and if I feel rubbish I'm put on iron tablets for a while and the venesections. I guess as long as I can manage this regime, I'll stick with it.
That is the PV roller coaster. Venesections = iron deficiency. Not enough iron = feel like rubbish. Take iron = feel better but need more venesections. More venesections = iron deficiency and feeling like rubbish again. I tolerated that for a couple of years but got fed up with it. PEG is working way better for me. I know that is not true for everyone. We each just have to make the best decisions we can.
Sounds familiar. That's been made rollercoaster for the last 13 years. Not sure of PEG is first choice in UK. Probably have to start with HU and don't like the sound of some side effects that can happen. Think I'll stick with rollercoaster for now.
I have heard from others in the UK that they were able to directly access PEG without using HU first. I expect is has a bit to do with which hospital your care is based in and how strongly your prescriber is willing to advocate for you. Others in the UK can advise you better.
Hi Peachjoy! You’re doing the right thing! I’ve seen 6 haematologists in 4 years till I found the one with whom I formed a real caring alliance. 🙂 it’s my life at stake here.
In Austria we ONLY go to specialists. Our GP has absolutely nothing to do with our ET management except giving us our monthly prescription.
Wishing you strength and courage to gain more insight and understanding about your body snd illness snd to take control of your treatment and options. Knowledge and a good, trusted Haemo are the foundation of peace. Have a Happy New Year!
Hi Anag,Yes, peace is what I’m craving right now. Can’t sleep properly but am so tired…
Just goes round and round in my head, totally distracting me from everything.
All of this is really badly timed, with Christmas and new year slowing things down…but worst of all, the Covid nightmare. I hope the situation In Austria is improving.
Thanks for your answer. I understand you completely. It seems that things that hit us always hit us in the middle of difficult times. I got my diagnosis when doing my thesis for my masters 4 years ago at age 52. I had a 3.92 average; a grade I had never dreamed of in my life. I had 3 TIAs in that time, which slowed me down considerable due to memory problems and fatigue (meds). My feelings, like yours, we’re jumping around. I hear this so often in our forum.
Please let go and let the future come. Meanwhile, prepare yourself for any situation. Take hold of the reigns. I strongly believe in God and that has helped me see things from a perspective of trust. I changed my expectations. I’m just human and I will enjoy my day, every day. 🙂 when I’m not well, I just slow myself, relax and wait. I know this will pass.
Corona has rarely bothered me, even though it really is a bugger. It has been a wonderful time for family and self-reflection and doing the things I had been postponing for years. It all starts with our own mindset and good support at home and from this forum. I just love the people here!
I will pray for peace and beauty inside you. Have a great New Year. Anag
I’ve found some solutions for the racing mind. GABA, starting at 150mg daily and moving up to 500 or 700. For sleep, 5-HTP, a form of triptophan, is transformed into seratonin in the body, which in turn becomes melatonin. It hits 3 birds with one stone. I sleep much better and my mind is much more concentrated. I even attacked the enormous pile of papers on my desk! Perhaps these are something for you?Anag
Dear Peachjoy, I completely agree with what's been said. There's nothing magic about reaching a specific age that suddenly increases your risk. So glad that you have a local haem who is happy to work with an MPN expert.
I'm back living in Surrey dealing with family issues for a while, but I'm planning to move in 2022. Would very much appreciate names of decent MPN specialists from Birmingham northward - as I'll need to change my MPN team then.
Hi I’m at the Christies Manchester under Professor Sommervaille he’s the best MPN specialist just get a referral off your GP I was under some shocking Haematolygist prior to my referral to the Christies
Brilliant to know a good Haematologist - mine is good too at DRI. I won't be too happy about additional injections - there are patches coming out I believe from Queensland, Australia. Watch this space... i have also emailed my MacMillan nurse for further advice - waiting for a response... Happy & Healthy New Year everyone
Really glad you are seeking advice from an MPN specialist. It will be good for your existing heamo too. She sounds as if she’s willing to receive advice. Better than leading you on.Happy new year.
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