A bit of an update. My local transplant unit has advised that a potential unrelated donor has been found for me on the German bone marrow registry. Looking at a mid September transplant, depending on the availability and health of my potential donor and me. A series of appointments have been scheduled for me with various doctors to check my heart, lungs, teeth etc.
Earlier in the year my haemoglobin level was dropping quite quickly. For the past few months I have been having four weekly blood tests. The good news is that it has now stabilised around 80 g/L. The results have been 78, 79, 80, 81 and 82 though not in that order.
My fellow kiwi readers may be interested to hear that ruxolitinib is likely to be added to the list of funded drugs for MF in New Zealand later this year. My haematologist raised the idea of waiting and then seeing if six months of ruxolitinib treatment was beneficial. My gut feeling is not to wait.
Also of possible interest to our kiwi readers, my haematologist sent a sample to Melbourne for the high risk mutations screening (ASXL1 etc.) that is often mentioned on this forum. None were found.
Best wishes to All ...Simon (PMF)
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That’s great news, as is your positive attitude, which will undoubtedly serve you well.
I hope all the tests that you have to undergo in these next few weeks, and the donor match prove to be successful. No additional mutations must give you peace of mind too.
This is a great first step. Well done. I have been aware of NZ lagging behind on allowing interferon etc over the years. I wonder if your consultant could get special dispensation in advance for you to get Ruxolitinib? if you wanted to trial that before starting on a translant? Interferon wasn't available here when I first had PV but I managed to get it. But as you have found a match which is such a lottery win I expect you are keen to take that route. Best of luck. Mairead
Hi Mairead, thanks for the suggestion. He has applied to our Ministry of Health for early access however I feel the timing is right for me to go down the transplant path. I think it would be very reasonable for another in my health situation to go down the ruxolitinib route or even just the palliative route. There is still plenty of life in this body. By the way, I did follow up your earlier suggestion with my haematologist and stopped the hydrea (hydroxycarbamide). Thanks again, Simon
Pleased to hear that no -ve mutations. ASXL1 would have steered towards earlier SCT but I think TET2 is only significant if AML.
Do you know your DIPPS score? Int 1 or Int 2?
Best of luck with the procedure. My new Hem happens to a leading SCT specialist. Says procedure improving all the time although no quantum jumps. Very good news if Ruxo now available since one of the promising new weapons against GvHD.
Hi Paul, I think it is debatable if am Int 1 or Int 2. My haematologist says Int 2. The two criteria that I get points for are haemoglobin less than 100 and weight loss. Interestingly, assuming that I have not had any high risk mutations disappear then my MIPSS70 risk level has always been intermediate, from diagnosis to now, however my actual condition has changed significantly so I do take the various risk scores with a grain of salt. Will be doing a google search on Rux and GvHD with great interest. Thanks for pointing that out. Cheers, Simon
Yes hopefully Ruxolitinib will be funded soon as it's in the last stages of approval, I put my submission in support of funding it 😁 Where are you in NZ Simon?
Useful to know they sent off for screening, I'm only ET JAK2+ currently but it helps to know that the path has been laid to do that 😁
Hope the SCT goes smoothly, great that you have a potential donor.
Thanks Wendy. I am in Christchurch, which is also where the South Island transplant unit is located. Hope you have been healing up nicely from your accident. You must be well into count mode for your big trip by now. Looking forward to reading a post about your adventures and the Belfast forum ...cheers, Simon
Are you on the MPN NZ Facebook page? If so one of the administrators who is also in Chch, had an SCT in 2014 so may be useful to contact if you haven't already 😁 I'll PM you.
My leg is much better thank you, orthopaedics wouldn't touch it as I've had previous surgery on that knee and haemorrhaging and septic arthritis in it as a result of the surgery, so no ACL reconstruction and just physio rehab. I've worked really hard on it with the exercises and am doing most things, I walked 1km twice the other day (flat ground) and am doing yoga and pilates classes, it's getting pretty flexible now but still pretty sore some of the time, mostly in the evenings when it's had enough 😂I'm avoiding painkillers but will probably resort to some on the long flights 😉
I'm really looking forward to going to the forum, are you going to the NZ LBC one on 8th September in Wellington? My haematologist is giving a talk relating to MPNs, not sure what the actual topic is though 😉 Hopefully I'll hear about that one from some of the NZ people on here and MPN NZ Facebook. I'm crazy busy with work (still recovering from a 2am bedtime after working on Thursday night, I work at home), but hopefully this week I'll have time to work out what to pack etc 😂
Hi Wendy, hopefully your family will be able to ferry you about so you can protect your knee in the UK. I meant to say 'countdown mode' for your trip, not 'count mode' in my reply above. This is the only MPN site I belong to. I do not have a Facebook account. Will reconsider that. I am not going to the NZ LBC forum. That is unfortunate timing for you. A forum in your own backyard that you will only just be missing out on. Still getting to go to the Belfast forum must be a real buzz for you.
I need to use my knee (although not too much) as it gets quite stuff and sore if I sit for too long. Regretting not going relatively cheap business class with China Southern now 😂 I think the Belfast forum will be more useful than the LBC one as it's obviously all MPN related, but it would have been nice to go to both if only to meet a few NZ people with MPNs. Peter (StillKicking) is the only other person with an MPN that I have met so far even though he's down near Dunedin, really looking forward to meeting with the Belfast forum crowd 😁 I'll have to catch up with NZ people when I get back and try and organise a Wellington meetup, I've just been so busy with work etc and now off to the UK 😉
Best of luck with the tests and your potential German donor, I hope it all goes well and will keep an eye out for update posts on here or from Annette on the Facebook page 😁
Will do, thanks Gill. I am actually still in very good health, just the old battery is getting too flat and it needs replacing or support. From my perspective I have simply decided to go for an 'early' transplant as that suits my current stage of life. Best wishes, Simon
Hi Simon, great news that you have a donor, many donors are German because of their 'opt out' system I believe and have been the saviours of a good many folk by giving them a second bite at life.
The timing of transplant with something like MF is always a tricky decision as one wonders if I just hang on a bit longer this or that might or will be available but as I always say and in my case the drugs help to alleviate the symptom burden but the underlying MF marches on and even though I was on Ruxolitinib I could tell at Intermediate 2 my MF was ramping up.
So from what you say I'm thinking your mind is made up and that youve made the right choice for you at the right time. Im sure you appreciate its important that you are fit enough for transplant and you go forward 100% committed to it.
Hi Chris, well thanks to the German peoples and the system they have. I wonder what the implications may be if it is an 'opt out' system. Nice that it has worked so well for so many. I have been following your posts for quite a while and understand the need to be 100% committed. Thanks for your many posts and good luck to you also with your ongoing recovery ...Simon
Thank You. I am feeling alot stronger and starting to enjoy life again.
There is much debate around the rigors of bone marrow transplantation particularly in respect of GVHD and as you are likely aware Ive had a rough time with it. People have asked me if I would of gone ahead if I'd of known how difficult and protracted my recovery would be. The answer is a resounding yes for many reasons. You find out alot about yourself and find inner strength you didn't know you had. But most of all you get a cancer free life. And it feels good.
I must say most people get mild to moderate GVHD which demonstrates their Graft is settling in and kick starting into life. It's quite miraculous.
Hi simon, not sure what time it is down in nz?but just to say ur attitude & your outlook in life need applauding. You are indeed a brave person & its obvious you have done your research into it all & do not take it lightly, i wish you all the best &, hope your up & coming tests go well. Many people im sure on this site will be thinking of you & with that spirit of yours you will indeed find that inner strengh, chris (jr) talks about. Wishing you all the best & sending hugs.🤗
Hi Simon, I have just approved Annette to our small NZ group and wanted to welcome you both. SCT can be a daunting process but in my personal experience, it has been a very positive one. I now have all normal cell counts and no fibrosis. There is also another couple in Christchurch in a similar situation, tentatively booked in for transplant in Oct, and just in the process of work up and finding a donor. We often meet for coffee and a catchup so you would be welcome to join us any time. Also please feel free to ask any questions, I am happy to share what I have learned from my own experience.
Hi Kathy, thanks for the welcome to the NZ group and catch up invite. If I am transplanted before the Oct couple, then will be able to provide the current local info as we go along if the Oct couple want that. Annette and I will do our best to come along to the next time you guys are having a coffee and catch up. We do not have any questions at the moment. Nice to know that we can ask when some questions do come up. It is one of those things that one does not know what one does not know.
Just another thought ... I was on a Jak2 inhibitor (not Ruxolitinib), prior to my SCT, with the aim of reducing my spleen. This increased my appetite, so I could gain some weight prior to transplant and improved my general condition significantly. I hope the Special Authority application is successful for you and you are able to take Ruxolitinib.
Good luck Simon. Jedi Chris is right, once you have decided just be positive and go for it; attitude really does matter. No surprise that your potential match is from Germany as we are such a bunch of mongrels on this planet and they do have the best registry in the world. I have several transplant friends with German cells.
Suspect the admin person SCTer referred to is my mate Kathy T from Christchurch (who is also german ‘cell-ed) who will be a great help. When she was going in we agreed to walk the Banks Peninsula path when she was better and we flew over when she was 18 months out and did it. Happy to help with any questions. Good luck from the UK.
Hope all goes well - I almost had a German donor but had to be switched over to an American at the very last minute. Had my SCT 3 yrs ago now and going strong.
Best of luck for the upcoming 'challenges' - a good dose of character and willpower will probably come in handy.
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