Done being passive

From now on I am taking power of my health and ET. I'm done listening to my hemo. Her message is: take your meds, take your shots, progression is random, everything is due to coincidence. She laughs at all alternative approaches.From now on, no more meds that isn't absolutely vital, NO shots, total focus on genuine healing, lowering inflammation, mental and spiritual healing.

[Spanelmad]

Giving you a round of applause!!!! Maybe a MPN specialist referral is now needed. Max at MPN voice has a list.Good luck and let us know how your getting on.

[Mostew]

I always disregard the things medics say, when it doesn't feel right . Question what they are saying and try and have a 2 way conversation.

I'm interested in what alternatives you are finding helpful

[hunter5582]

It sounds like it is time to replace that hematologist if she treats you that way. Not all docs are like that. Some are not only respectful to patients but are also MPN experts and open to complementary health approaches. The patient is always the captain of their care team, including choosing who is on the team. Assertive patients receive higher quality care. Passive patients do not. Shared decision making, mutual respect, and compassion are the hallmarks of a healthy and effective doctor-patient relationship.

Wishing you success moving forward.

[Hidden]

Thanks for your answers and encouraging comments! In Sweden unfortunately you don't get to influence your healthcare at all. Sure, it's free and equal but equally bad.... Almost all doctors are really anti everything not involving drugs. And if you suggest anything yourself most of them won't listen and they become really offended.

This is why I have decided to decline my annual appointment with my hemo. So far all it has given me is a lot of negativity and a overwhelming feeling of being powerless. It has definitely done more bad than good...

But no more, I am taking a far more holistic approach to my healing from now on. I will share my journey with you guys if you want. Feel free to be inspired and join me.

[hunter5582 in reply to Hidden]

Sorry to hear that you experience healthcare that way. Authoritarian healthcare = bad healthcare. Healthcare is supposed to be a process of shared decision making in the context of a mutually respectful relationship. This is supported by law in Sweden.

"The 2015 Patient Act sought to strengthen the rights of patients and encourage shared decision-making. It clarifies and expands providers’ responsibilities in conveying information to patients, guarantees patients the right to a second opinion, and ensures choice of provider in outpatient specialty care. " commonwealthfund.org/intern...

It does seem that there are challenges in making shared decision making a reality, as reflected in this paper. I expect this is true in many healthcare systems. There is also wide variability in provider commitment to shared decision making nearly everywhere. sciencedirect.com/science/a...

Ensuring that we have an equal voice in healthcare decisions requires individual advocacy. Assertive patient receive higher quality care. Passive patients do not. Moving healthcare systems forward into realizing the potential for the higher quality care that results from a shared decision making model requires collective advocacy. Inadequate care can only continue when it is tolerated. Working collectively, the patent community has the power to make change a reality.

Given your current needs and willingness to consider complementary health approaches, you may find greater success in consulting with a Functional Medicine provider. These doctors look at the body as a whole system and tend to be more open in how they think about interventions. Here is a list. ifm.org/find-a-practitioner...

Wishing you all the best.

[william-Indo in reply to hunter5582]

Does you insurance pay for functional doctor and meds...?

[hunter5582 in reply to william-Indo]

My insurance potentially would pay but the doc I chose only takes private pay. It is worth the money,

[william-Indo in reply to Hidden]

Same experienced.

That the reason I fly for 3 hours from my country to find another doc for better treatment.

And it is worth

Cheers

[saltmarsh]

Well done. Every patient needs to have their program tailored to THEM. We are individuals and certainly with respect to MPN's there is no standard approach. I switched to a doctor who believes in a patient centric approach and it has made all the difference. Good luck and let us know how you're progressing.

[EPguy]

I relate to "Dr is right" I paid a very high price for that way of thought.

But on platelets, what is your PLT count? We have not seen here any non-drug way to consistently lower these counts. Are you planning to try some? It would be great info.

In some ways our outcomes are random, but we can much improve the odds in our favor by taking charge as you're doing. At least you need to get occasional blood counts to follow the ET.

Which shots are you referring?

[BallroomMom]

I’ve had to be frank with my hemo/onc on several occasions. He and his team, though, are very open to complementary interventions. I am an unusual patient for the team - I’m 68 yrs old, typical for ET but I was in peak physical shape on my first visit. So they are keeping notes on my lifestyle changes. I’m taking a mushroom mix daily and it has upped my energy a bit and improved my brain fog completely. The nurses especially take notes to share with other patients.

Other alt treatments are upping my meditation, some yoga poses, learning to exercise gently instead of the beast I was, using hypnotic suggestions, upping my D3K2 supplements since I’m no longer sunning or working out in the sun. I see a therapist regularly, etc.

I understand quinine will lower platelets but it is not innocuous even if it is natural.

[Franko21 in reply to BallroomMom]

Thank you for sharing I have read recently you need K2 when taking D3 so will start that as like you I’m not out in sun so often. I’m interested in which Mushroom mix you take as I’ve read good results with mushrooms.

[Hatchie]

Hi Mate,

I was diagnosed with ET at 33 I was unable to take aspirin due to my bleeding. I refused to take hydrea because of the lack of studies on the long term impacts of taking it from a young age and its toxicity profile. I focused on my health, resistance training at the gym, intermediate fasting and sauna and cold plunges.

After 7 years my ET was causing debilitating migraines, visual disturbances and burning in my feet. It was at this point I started taking peg interferon to control my platelets and symptoms.

In Aug 2022 at the age of 42 my diagnosis changed from ET to Post ET MF. This changed everything and really limited my treatment options. I've been told that I now need to go to transplant and this is the most difficult choice I will ever make.

I often wonder if I had started hydrea or peg earlier could that stopped or slowed the transformation to MF? There is some evidence that peg may do this.

To get through this you need a good relationship with your doctor. I agree your current doctor sucks! No matter which way you go will need the data from regular blood test, spleen measurements and bone marrow biopsy.

From my experience alternative therapies will help with some of the symptoms.

I eat healthy, I never drink, smoke or do drugs. I exercise 6 days a week. But I still progressed to MF which will kill me if I don't have a transplant.

I understand your frustrations. You will learn and know more about your disease than anyone else. But you will need help to get through this.

[Bellakeira in reply to Hatchie]

Sorry to hear this wishing you all the best ❤️

[Joshy87 in reply to Hatchie]

That’s interesting. I’ve just been diagnosed at 37 and I don’t have any symptoms yet. I don’t even want to take aspirin daily as I feel fit and healthy currently but maybe I should re consider

[william-Indo in reply to Hatchie]

Pls check Epguy's post about combo Rux + Peg treatment and discuss to your doc.

Whishes you all the best

[Hatchie in reply to william-Indo]

I've already done that combo, I didn't get a response. I also did the triple combo rux/peg/hydrea and no response it didn't even make my red cells go down. That's why I'm told it is time for transplant before I go into blast phase because it seems there is no stopping it.

[Hidden]

Thanks for your support guys! I wish you all good luck on your journeys.

[Amethist]

I gave up seeing my haematologist ( aka harmatologist ) years ago. Took over total control of my own health and feel great physically and mentally!

Hope you didn’t suffer adverse event’s following shots? Thankfully I was already awake to these as I had initially wondered if the numerous jabs I had received whilst working in nhs had been the cause of my ET.

Wishing you all the best.

[jointpain]

Wishing you success. If only Drs gave all and I mean all the results from tests and conversations they have with others about your condition, I and my wife would be much happier more informed people, able to think and act for ourselves. Instead we get accused of all sorts, when we know the change in dosage etc isn't working.

[kitttycat]

Hello, keep advocating for your own health as necessary. This is so important. While we seek medical advice, we also know ourselves. Good luck.

[KoroCharlie]

10 years Hydroxy Urea for PV with no major side effects until 2017 when diagnosed MF at age 67. Severe weight loss, fatigue, night sweats. Transitioned to Ruxolitnib which addressed symptons but advised to make plans for imminent departure. Decided to take control, changed diet, (eliminated sugar dairy educed meat), began listening more carefully to my body and committed with partner to live positive loving life for however long I had left. 2 years of regular blood transfusions then returned to normal weight, sleeping well, blood transfusions rarely required (3 years since last transfusion) living full active life including full time work on projects that I enjoy. No longer live in fear of my future but know it will end eventually. But thats just me. Cannot say that my improvement was due to any of the changes but do feel effects of bad diet when I decide to splurge. We are all different but highly commend taking charge of your own well being as well as considering diet and attitude changes.

[Scaredy_cat]

I hope you won't ignore modern tested medicine. I understand your frustration with your current doctor but often just because something has no visible symptoms doesn't mean harmful affects underneath.

[LeoTravels]

Well done you. I would be seeking another health professional to manage your health, I am in Australia and have a brilliant Haemotologist who has been on this journey with me for years now, she is a fabulous support and as things go off in tangents with my blood diseases she finds ways to treat me including medication and therapies - both physical and mental. We all deserve to be treated with respect and I often wish that our Doctors could experience the medical issues we do for a day and know how it feels before passing judgement.

All the best to you and fantastic work looking after yourself!

Regards from Sydney.