MPN New Zealand Information and Support and MPN Australia & NZ Myeloproliferative Neoplasm Support Community - Facebook Groups

[Wentry]

Hi everyone,

For those of you on here that are are in Australia and New Zealand I just wanted to let you know that are now two great Facebook Groups for people with MPNs, survivors of MPNs, and their families and carers. They are closed groups so only members can see posts. Some of you may already know about the combined Australia and NZ one, but a new one was set up last Sunday just for people in New Zealand, this is an extract from the page information -

'This group has been set up to provide information and support to those currently with MPN’s (Polycythemia Vera, Essential Thrombocythemia, Myelofibrosis), survivors of MPN’s, caregivers and family members, who reside in New Zealand.

As our health system, and access to drugs is unique to us, it will be immensely helpful to have a place that we can share experiences and offer support to others.

Trying to navigate your way through a diagnosis which most people have never heard of, can be a confusing, and lonely process. Currently there are no experts in New Zealand, taking a specialist interest in this field, and it can be difficult finding up to date information about treatment options. Being part of a support group that shares information gives us a better understanding of the treatment options available here in New Zealand, and overseas. As a collective group our shared knowledge is an invaluable resource and I would encourage all to share any new insights and possible treatment options freely.'

The links are -

Australia & NZ - facebook.com/groups/mpnaust...

NZ - facebook.com/groups/5845383...

I don't think there are many of us on here from NZ but thought I'd share as it's great to finally have something that is for NZ, so that we can have meet ups and support each other, and that will also hopefully help us with trying to get access to drugs that are available in other countries but not yet available in NZ. There was an MPN gathering in March in Wellington where Dr Ruben Mesa gave a talk, so onward and upward!

Happy browsing!

Wendy

[Rachelthepotter]

Hi Wendy. I have MF, and I’m not from NZ, but I lived in Australia through my twenties, and also have very fond memories of two trips to NZ. I liked the - just do it- approach to life which had a big impact on me, and made me aim to do likewise.

Forming a NZ group to press for better informed care and access to drugs must be worth while: having Reuben Mesa stop by and give a talk is a great start.

I hope you enjoy the meet ups. All the best.

Rachel

PS Onwards and Upwards was my school motto, so seeing you use the phrase made me smile.

[Wentry]

Hi Rachel, I'm originally from the UK, been in NZ 12 years and 7 in the Netherlands before that, and yes that approach to life here (and in NL) is something that appealed to me too. I unfortunately missed the Wellington session as I only found out about the MPN Australia & NZ page two weeks after it happened, I was devastated for a few days knowing I'd missed it by such a short time. Really looking forward to hopefully having some meet ups soon, and finally meeting someone else with an MPN!

Ha ha onwards and upwards is very English 😉

All the best to you too, I read a lot of your posts 😁

Wendy

[eire]

Hi Wendy I'm also an MFer!!!! I spent my 20's living in NZ. I was distraught having to leave when my mum was terminally ill in the UK. Unfortunately in those olden days travel wasn't like it is now and I just never had the funds to go back. I've been to Oz as well but NZ is just quite simply the best - in my opinion. Fantastic to have this support group and imagine having Reuben Mesa there!!!!! I hope they have another forum soon for you I'm hopeful we're soon to be having one in dublin. I've only been to one and that was when I was newly diagnosed and had no idea how serious MF was. Bit of a shocker especially as I was feeling great at the time!!! Wish you well and hope you get to the next forum.

Pat

[Wentry in reply to eire]

Hi Pat,

Sorry to hear you are fighting MF definitely worse than ET, as far as I know I only have ET but I haven't had a BMB yet and I'm not currently even on aspirin due to bleeding problems, I'm going to ask for one when I see my haematologist on Friday to try and confirm my diagnosis as he said 'probably ET' in the letter to my GP, so I'd like a definitive current diagnosis if possible. The only down side to living here is that we're a bit behind as regards available drugs for treating MPNs, one of the ladies who helped with setting up the NZ Group is very active with talking to the various organisations and government to try and sort that out, so hopefully we'll get more options soon! It's great to go armed with the latest information from the UK and US when talking about treatment options though, so very good to be on here too My husband and I both have parents in the UK still who are getting more frail, I guess it may involve spending an extended length of time in the UK at some point, but luckily we now have NZ citizenship so can come back at any time.

Hope you stay as well as possible and that you get a Dublin forum soon!

Wendy

[Wentry in reply to eire]

Hi Pat I see you booked for the Dublin forum did you hear back quite quickly as I'm trying to book the Belfast one but haven't heard back yet, so I wondered if it would be a few days before we get confirmation? I'm in the UK for the 8th Sept one so am planning to get to that if I can booked into it Wendy

[eire in reply to Wentry]

Yes I heard back y'day from Maz. I'd say they're contacting the earlier ones first Dublin is July -maybe. I was going to the last one in Belfast (which was cancelled due to the weather) but had car problems and was unsure they would be sorted in time. Don't worry you will be contacted. Enjoy the forum and Belfast if you're staying over its a great city.

[dd21]

Hi Wendy

I am Jersey (GB) based and a regular visitor to NZ, diagnosed ET 26 years ago.

Knowing there is an active group in New Zealand is a boost as a possible future information source to me.

On my last trip out I found myself short on one medication (Clopidogrel not Hydroxycabomide) and had to find a GP's clinic over the Christmas break. Explaining to a doctor how the meds worked wasn't a major problem, but you always worry they don't quite get it. If I had needed HC a few days wait wouldn't be a serious problem, however knowing where the best informed hematologists are located would be a useful resource for an emergency.

Good on you for organising an NZ group. Resources like this are so very valuable when you are feeling isolated.

I'm a little surprised to learn you don't have a resident NZ expert heamo. We have one in Jersey, population circa 100,000. Constant CPD is necessary for them, but perhaps the modern multi-media can alleviate that. You may also be aware that some of the new meds becoming available to us are very, very expensive and a constructive lobby group would only help the "cause" down under.

Dave

[Wentry in reply to dd21]

Hi Dave,

I'm afraid I can't take the credit for setting it up, just letting everyone on here know about it, but yes it's exciting that we have it! Hopefully the people in the NZ group will be able to help if you have a similar situation again trying to find meds, although there are only around 20 members so far, more than on MPN Voice though

Those words about there being no specialists in NZ were from the lady who set up the group, we have haematologists but even mine in Wellington admitted they aren't experts, he did say though that they have contacts who are and he would definitely use them when necessary, maybe Dr Reuben Mesa?? I shall have to ask him Friday at my appt. There aren't even any private haematologists in Wellington.

Yes unfortunately I think the cost is a major factor in getting drugs approved everywhere so the more people campaigning for them the better and also the backing of specialists would help too.

Wendy

[JediReject]

Hi Wendy , , Thanks for posting this upbeat news I'm really pleased to read about what's going on in NZ. When I was diagnosed and looking for info on MF I recall there being something in Aussie but apart from the US and UK I don't recall seeing anything by way of support groups anywhere else. I suppose one tends to forget that MPNs not only affect peops in countries with large population but can strike anywhere and you folk in NZ seem to be disadvantaged without a specialist. But if you can access experts like Dr Mesa all to the good. I too would of been gutted to have missed the chance but hopefully more will come along.

I hope you get a full picture of your ET diagnosis.

Out of interest is there a hospital or centre that does Stem Cell Transplant in NZ ?

Best Wishes -Chris

[Wentry in reply to JediReject]

Hi Chris,

Yes and disadvantaged by having so few people with MPNs

I'm not sure if there are places that do SCT in NZ but I expect so, the lady who set up the page is in Christchurch on the South Island and she had an SCT a while ago, I shall ask her, it's useful to know these things!

Best wishes to you too,

Wendy

[kaymack in reply to JediReject]

Stem Cell transplants are available at Auckland, Waikato, MidCentral, Capital and Coast and Canterbury District Health Boards.

I have a cousin with Mantle Cell lymphoma who had one over a decade ago at Auckland Hospital. A new state of the art facility opened at Auckland Hospital during 2014.

[Wentry in reply to kaymack]

Apparently there is also a centre in Dunedin, however Waikato, MidCentral and Dunedin offer a different kind of transplant that uses the patients own cells (autologous transplants). Donor transplants are only done in the main centres i.e. Auckland, Wellington (Capital & Coast) and Christchurch. Autologous transplants do not have the same complications like graft verses host disease as they don't have to find a close match, but apparently they don't do own cell transplants for Myelofibrosis, only donor transplants.

[kaymack in reply to Wentry]

Thanks for the clarification, Wentry. Autologous transplants aren't helpful for CLL, either. Apparently the Malaghan Institute in Wellington will be starting CAR-T trials soon though, which is amazing: malaghan.org.nz/news/radiol...

[Wentry in reply to kaymack]

Hi kaymack, yes amazing! I've just read a bit about them as I couldn't remember exactly what it was and apparently they can do CAR-T both autologous and allogenic (donor) too so that's good. Some very exciting progress being made for attacking cancers.

[Loubee27]

Hi Wentry, thanks for your info. Undiagnosed officially as yet but hoping for some useful info. At this stage I know more than my Dr and it’s not much. He doesn’t seem to be interested really. I just go and ask for an FBC when I feel bad. No mention of aspirin or anything from him. Frustrated!

[kiwitraveller]

Thanks Wendy I am a kiwi and spend 2-3 months each year in NZ and was considering going back to live when I was diagnosed so decided the U.K. support st this stage was better.

[shaman666]

Hi there,

today I was confirmed as having myelofybrosis and am in NZ. The links to the Facbook pages above dont work for me. What is the name of the NZ group please?

Roger

[Wentry in reply to shaman666]

Hi Roger,

The group was recently transferred to be under the umbrella of Leukaemia and Blood Cancer NZ as the admins couldn’t manage it anymore, so the new group (same members) is LBC MPN Patients 😁 See you there!

Wendy

[Wentry in reply to shaman666]

Hi Roger,

Sorry I also meant to say that the combined Australian/NZ one is the same name as above in the title of the post - MPN Australia & NZ Myeloproliferative Neoplasm Support Community.

Hope you manage to find them both!

Wendy

[shaman666]

Thank you

[Grandmaof8]

The link to the NZ group didn't work for me. Is an NZ group still active?