Unsure of treatment

[Debinuk]

My first post. I was told that I had an MPN 6-7 years ago and that I had too many platelets. My haematologist has never given me any details about my disorder and I have just presumed it was ET . I was put on aspirin which eventually gave severe stomach problems. I have now been told to start hydroxyurea because of my age and was reluctant to do so because of side effects. There has been no discussion about anything and I am not aware of a ‘team’. After joining this group and reading posts, I am beginning to think that something is missing in my care! The haematologist appeared to be astonished when I queried the medication. Is this typical of treatment in the UK?

[Spanelmad]

Time for an MPN specalist!!! Unfortunately my experience is similar except I was given a booklet from leukaemia care, told it was Et jak2

[Debinuk in reply to Spanelmad]

Thanks for that! Do you ask for a referral from your haematologist?

[Spanelmad in reply to Debinuk]

I've asked for a second opinion with shared care from Guy's hospital.Had to push it with the Heam but eventually they agreed.

[Yarnhabit in reply to Spanelmad]

Same here , exactly that. It’s this that’s wrong with you, here is a book, any questions??? Er no because you said it’s ok- which I know it is but still!!! I toddled out, looked at the book in the car park just before going back into work and was absolutely gob smacked. All my Haematologist seems to focus on is the platelets not how I am feeling. I found this forum and that has been the most helpful thing along with the Blood Cancer website. I know I am ok but am thinking of asking to see an MPN specialist.

[Spanelmad in reply to Yarnhabit]

Yes scary!! Totally agree this site is amazing given me the strength to challenge the Local Heam and ask the joint care with Guys.

[Otterfield]

No, it's not typical. Perhaps you could find another haematologist, better still , ask to be referred to an MPN specialist

[Debinuk in reply to Otterfield]

Or perhaps a second opinion? I feel that it may give me a bad reputation with the medical professionals!

[SarahPV in reply to Debinuk]

I thought (and worried) the same but my haematologist has always referred to Prof Harrison as the MPN specialist which of course she is! We do have to advocate for ourselves. Xx

[Kari1961]

As far as my treatment is concerned this is not typical. I have PRV Jak2+ - my first Haem appointment lasted for nearly an hour. He gave me a lot of information on PRV, and also gave me print-outs & booklets to refer to. I was introduced to my specialist nurse and given her contact details.

At first, I was to take Aspirin and have venesections, then 18 months later I was put on Hydroxy. As I was apprehensive about taking it my Haem and nurse took the time to reassure me and also advised me of things I could do to limit any issues - i.e. keeping myself well hydrated, healthy diet, etc.

I would definitely ask your GP about a referral to an MPN specialist.

[sydunipete]

you didn’t mention your age but definitely seek out an MPN specialist.

I was diagnosed with ET 11 years ago and I’ve been on Hydroxyurea for 10 of those years. I’ve had zero side effects and zero noticeable symptoms from my ET. I was very concerned at first but spoke with a few medical people I trusted and once I started all worked out fine.

Having said that I’m about to transition to Pegasys.

[Lilliegarden]

it’s not typical but not unusual either, my initial hospital care/treatment was a shambles until I lost patience & insisted on a new consultant.

Call your haematology dept and speak to the specialist nurse & explain your concerns. These nurses are usually amazing

[mhos61]

Unfortunately we do see similar stories to yours from time to time. It’s time to start advocating for yourself.

Ask your haematologist what are the other treatments available, so you can consider ALL options. Ask about the ‘age criteria’ for commencing cytoreductive therapy. Some haematologists now consider 65 to be the age to begin treatment rather than age 60, obviously depending on cardiovascular history, symptom burden etc. If your haematologist isn't ‘listening’ it’s time to look elsewhere. You can ask to be referred to another hospital, preferably one with a MPN Specialist through your GP.

Have you no CNS assigned to you? I think they’re so important to have on the team as part of your ongoing care. Have you been monitoring your platelets? You say aspirin upset your stomach, how have your hospital dealt with this issue?

[Frances1903]

So sorry you have not had much more support. Glad you have found us all, this is a fabulous support network. Bless you, usually you have a full explanation of your diagnosis , and time to ask any questions. At my local hospital we are fortunate to have a lovely team of specialist nurses too, whom i can phone anytime. I was given a clear diagnosis and I then asked which kind of ET I have . Hope so much you can find a doctor to help you and explain far more.

Please do let us know how everything goes.

[SarahPV]

where are you Debinuk I am in Sussex and have a very caring team of nurse specialists. Not too keen on my haematologist but never met him thanks to covid 🤪 so telephone appts only. Thanks to this amazing platform I felt confident in my rights and requested a referral to the amazing Professor Harrison. Had a very thorough conversation with me and we discussed treatment. I have a heart condition as well as PV. Felt very supported. We do have to advocate for ourselves or overlooked in my experience. Good luck xx

[SarahPV in reply to SarahPV]

I asked my gp for the referral to Prof Harrison by the way.

[Spanelmad in reply to SarahPV]

I'm in West Sussex which hospital are you using?

[SarahPV in reply to Spanelmad]

Hi there. My nurses are in Brighton. My haematologist is based in HH at the Princess Royal. What about you?

[Spanelmad in reply to SarahPV]

Hi Sarah, all based at st Richards Chichester.Waiting for the appointment atGuys

[SarahPV in reply to Spanelmad]

I’m very familiar with St Rs. It’s my elderly mother’s local! Are you happy with your advice/ treatment. Did you have to ask for a Guy’s referral or was it their suggestion? I hope it comes through soon. Love your little spaniel. I used to have a golden cocker 🥰

[Spanelmad in reply to SarahPV]

Yes that's Percy aka 'the pest'.Since my diagnosis I've had 5 different Heams ( all locums) ST Rs having recruitment problems apparently.I've still no named Doctor .So totally empowered by one of Hunters posts I decided to ask for a second opinion !they suggested Guys .So it's just await for the appointment.

[SarahPV in reply to Spanelmad]

Thank God for Hunter and co and MPN voice. Hopefully appt won’t be too long. I wish I could remember how long mine took to come through. Glad to have connected x

[Rachelthepotter]

Sadly , what you described can be typical. However, there is excellent treatment available that won’t impoverish you: you don’t say where you live, and that can make a significant difference. People on this site have spoken highly of Manchester, Guys in London and the Marsden as sources of MPN excellence. Take care.

[Scaredy_cat]

I'm in the UK and no it is not a typical experience. My treatment in Gloucestershire has been good with lots of information so changing to an mpn specialist is a good idea. If you have to see your existing haematologist again, I recommend taking someone with you to ask questions you forget

[quanglewangle]

Hello Deb

Welcome to the shadow world that can often be the lot of those with MPNs. Knowledge and informed help from the medical profession is patchy and in my area (50-60 miles from any major conurbation/hospital/specialist), I am monitored by GP and a haematology department with little experience or sight or sign of the oft referenced 'team'. My main source of knowledge is Blood Cancer UK , and this forum for support.

What you will find is that both ET and all of its treatments bring side effects and symptoms that may be minor or a real problem - we are all different and our progress varies accordingly.

The good news is that ET is not considered life-limiting, and private medical support is available if you you have the time and money to go look for it.

Since my ET was identified I have been on Hydroxycarbamide with varied but not exceedingly aggravating side effects and 14 years later my regular blood analyses regularly show that all of my levels are outwith normal ranges - but the haematologist says "this is quite normal - so keep taking the capsules and get on with life".

So - with minimal support, no 'team', no access to an MPN specialist, I carry on and look forward to the next twenty years (currently 80+)....

Good Luck - and please worry less!!!!

[Loubprv Volunteer]

Hello Deb

Well you poor thing! Set adrift in a quandary of what’s happening. This is ABSOLUTELY not how you need to be treated.

(I’m 69 and have had PV ( sister to ET if you like) for 15 years I have taken Hydroxicarbamide for 15 years with no side effects at all.

Please contact Maz at Mpnvoice.org.uk for a list of specialists in MPN s. Read the website it’s excellent. Ask Maz for an mpn buddy. ( read about that too!)

I decamped from my local hospital 14 years ago to a superb specialist with a great listening ear. You can choose where you go you know. Just ask your gp to refer you.

There is an alternative to aspirin.

You’ll be fine I promise but you must take matters into your own hands and be your own project manager.

When I left my hospital I wrote to the haematologist thanking him for his trouble, but that I objected to being treated like a half wit. Hopefully it made him think.

Best wishes

Louise xx

[Loubprv Volunteer in reply to Loubprv]

Ps I travel an hour and a half to Manchester to see my haematologist at the Christie. Worth every mile Louise

[Loubprv Volunteer in reply to Loubprv]

And me AGAIN! Sorry just read you might feel it will give you a bad reputation.

In my experience the more well informed you are the more respect these medics have for you. Do have a look at mpnvoice.org.uk LOADS of info.

Go forth and bang the table - this is your life! Xx

[Hopetohelp]

worth a look in to Pegasys. In uk you generally need to ask for it and you should get it. Be firm if you choose that road

[hunter5582]

It appears that you have already received universal feedback that this is not an acceptable level of care. There is no question about needing to consult with a MPN Specialist. Here is a list. mpnforum.com/list-hem./

We all have the right to receive high quality care. We also have a responsibility to ensure that high quality care is delivered. Inadequate care can only continue when it is tolerated.

One element of high quality care is shared decision making This requires that the patient and provider work together to make informed decisions. The patient needs a proper education about their condition as well as review of ALL of the treatment options. Here is a bit of information from the NHS about shared decision making. england.nhs.uk/personalised...

Assuming you have ET and age > 60/65 (depending on which protocol is used) then you would be considered to be "high risk". Cytoreduction is recommended along with an antiplatelet or anticoagulation medion. The commonly recognized preferred treatment approach for cytoreduction for ET is either hydroxycarbamide or Pegasys. There are also second line treatments such as anagrelide. Besremi and Jakafi are also used as second line treatment but are not available everywhere. There are also promising drugs in clinical trials such as bomedemstat.

In order to make an informed decision, you will need to consider all of your options. To make a decision you need to compare your treatment goals and risk tolerance to the risk/benefit profile of each of your treatment choices. Note that one of your treatment choices is to not choose cytoreduction and opt for continuing on your current treatment plan. The good news is that you do not need to be in a hurry to make a decision. Your risk profile does not suddenly increase on your 60/65the birthday.

Here are some resources you may find useful in making a decisions.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

nccn.org/patients/guideline...

If you are interested in additional learning

mpninfo.org/conferences/202... Start with MPN Molecular Biology

youtube.com/watch?v=3UHL4AM...(Not working as expected?)

Wishing you all the best moving forward.

[Tyce500]

Hi, I tend to agree with you and it seems to be "pot luck" depending on which hospital you are under. I only saw the consultant haematologist once for the first meeting in June 2022 when was told I had ET. I have to ask questions at each consultation I go to and have only seen the Consultant once more early January, the other haematology doctors don't really have much knowledge at all and give conflicting answers! I have now asked for a second opinion and a referral to Guys and am waiting on this, also clinical trials of which the team had no idea! Hopefully, I will get answers soon (am on Hydroxycarbamide at present due to having had a TIA in April last year). This forum is of immense use and gives lots of information and nice to see comments from others with an MPN. One idea I have picked up from here is to see if there is a "local" support group in my area for other patients with an MPN so will be ringing the department nurse (have had no contact with them at all) to find out! Good luck and take care!

[Spanelmad]

Picking up on the local support Im in West Sussex. near you?

[Exeter21]

yes like you I queried everything as no one seemed knowledgeable on the disease &!treatment. They always give hydroxy however I was not tolerant to it very bad stomach & gastric problems caused. I contacted MPN at Guys Hospital London for advice & approved for Interferon.

My local Drs never see me & took no interest. My hospital does phone consultations & bloods but you have to push for your own treatment I found . Read this website. The Aspirin has to be the generic coated to stop gastric problems. Take it with food then no problem. Only low dose 75 I take . Read MPN list on this site . Julia 👍

[rebeccaxxx]

I had a similar experience in Halifax, so I transferred to Manchester Royal Infirmary (I told my halifax consultant to do this and the reason why) and have received much better holistic care.