WARWICK's ASCT Journey Begins Today...

[MPN-MATE Admin]

Warwick & Nina_08.02.21.png (718.54 KiB) Viewed 3699 times

Hey everyone...

As the subject of this Post is about Warwick's Allogenic Stem Cell Transplant journey, he will come back as he progresses through each stage of this journey to share the experience w/ ALL MPNers, who might have an interest...

I met up with Warwick & his partner Nina this AM, immediately after he had received his 'Heart PICC' the central line, as can be seen in the photograph...

Warwick is in very positive spirits, and two of his sons decided to show their support for their Dad (Warwick), by shaving their heads and doing some impressive fundraising for the Leukaemia Foundation, (naturally I've invited them to repeat those efforts for MATES too...)

Hence, if you have any questions or simply just want to wish Warwick well on this stage of his MPN journey, please Post a comment here, and I am sure Warwick will respond just as soon as he is able...

Thank you all...

Steve
(For Warwick & family)

[EmeraldA]

Hey,

I just wanted to wish you the best of luck! .

B x

[MPN-MATE Admin]

Hey Brona...

Thanks for your messages...

I am sure that Warwick will reply as soon as he is able. Apparently, (so he tells me), he is not too computer savvy... But hopefully, during his long convalescence he'll pick up a few new tricks...

Cheers Brona, stay safe & well...

Steve

PS. Warwick starts chemotherapy to knock out his immune system as of today, as I understand it, and then engraftment target day will be the 19th of February, if all goes to plan etc...

[Misty-3]

Wishing you all the best Warwick...will say a prayer for you...take care and God bless!!

[MPN-MATE Admin]

Hey Morning Linda...

Thank you for Posting here where Warwick is most likely to reply when he is up for it etc...

Please take good care of yourself over there ... Stay safe & well...

Best wishes Linda

Steve

[Alkemist]

Hi Warwick
Hope you are keeping healthy and in good spirits and that today's planned procedure is successful.
Best wishes
Allan

[MPN-MATE Admin]

Hey Allan ...

Thanks for Posting buddy...

I am sure Warwick will respond as soon as he is up to the task again, just also keep in mind that he does not count computers among his friends etc...

Best wishes buddy...

Steve

[Merry]

Thinking of you Warwick. Hope everything is going as planned. Sending best wishes, Merry

[Kinsale]

Hi Warwick. Good luck my friend! Your are in great hands with your medical amd all of us here at this forum are thinking of you. Mark

[MPN-MATE Admin]

Hey everyone...

Warwick contacted me today and said he's been a tad off colour for the moment, and he promises to come back to thank everyone whose wishing him well, asap...

He also provided this little clip of his new companion ~ The NOSE DRIP ~

Anyways, he appears in fine spirits, and will be back on line in due course...

Thank you all...

Steve
(On behalf of Warwick & family)

Warwick_(2).png (1.69 MiB) Viewed 3592 times

[KatieB]

So pleased to hear the news about Warwick, Steve. Thanks for letting us know. We shall look forward to the day when he is well enough to tell us about his journey.
In the meantime, positive thoughts and love to help Warwick though this difficult time.

Best wishes to all,
Katie

[MPN-MATE Admin]

Hey Katie...

Absolutely... This is an extreme moment & part of the journey for Warwick and he seems to be managing to keep his spirits high which is AWESOME!

Steve

[Warwick]

Hello my MPN friends

Thanks for your well wishes. Sorry for the delay getting back to you but i just worked out how to do this on my phone. I have no energy or concentration to turn on the computer. Today is plus8 ie 8 days post transplant. The next week is the toughest only 2 rounds of chemo to go. Around day 14 engraftment may commence ie the new stem cells start to grow and make blood in my cleared marrow space. Engraftment can take a bit longer with myelofibrosis patients due to the scar tissue in the marrow space. The picture steve posted was me having platelets which is such a strange thing to think when my platelets liked to be around 900 to 1000 or more. The current chemo methotrexate is cleaning out any old marrow cells that are just breathing or were hiding for the fist 2 weeks of chemo blitz. The immunosppresants are ensuring my new stem cells are cruising through my system unopposed. My White cells are 0 platelets are 10 and haemoglobin was 59 but i had a bag of blood this morning which will put a spring in my shuffle.
The medical team here at Westmead are unbelievable can not speak highly enough of them.

I dont have the TV on but have not missed it at all. I have not streamed any movies etc and have not read anything for 2 weeks. Listening to the radio is entertainment enough. im never bored as the nurses are contantlly changing iv lines giving me tablets and care. It takes a colussal effort to keep a human alive with no marrow

best wishes

Warwick

[Warwick]

Hello my MPN friends

Thanks for your well wishes. Sorry for the delay getting back to you but i just worked out how to do this on my phone. I have no energy or concentration to turn on the computer. Today is plus8 ie 8 days post transplant. The next week is the toughest only 2 rounds of chemo to go. Around day 14 engraftment may commence ie the new stem cells start to grow and make blood in my cleared marrow space. Engraftment can take a bit longer with myelofibrosis patients due to the scar tissue in the marrow space. The picture steve posted was me having platelets which is such a strange thing to think when my platelets liked to be around 900 to 1000 or more. The current chemo methotrexate is cleaning out any old marrow cells that are just breathing or were hiding for the fist 2 weeks of chemo blitz. The immunosppresants are ensuring my new stem cells are cruising through my system unopposed. My White cells are 0 platelets are 10 and haemoglobin was 59 but i had a bag of blood this morning which will put a spring in my shuffle.
The medical team here at Westmead are unbelievable can not speak highly enough of them.

I dont have the TV on but have not missed it at all. I have not streamed any movies etc and have not read anything for 2 weeks. Listening to the radio is entertainment enough. im never bored as the nurses are contantlly changing iv lines giving me tablets and care. It takes a colussal effort to keep a human alive with no marrow

best wishes

Warwick

[Warwick]

Hello Everyone

I reached another milestone on Monday with my last Chemo dose. Now its a matter of topping up my platelets and red cells and keeping up the cyclosporin which is an immunosuppressive drug. They are also giving me panadol, endone, for headaches anti nasuea drugs drugs to protect my liver and kidneys antireflux drugs and my continual chocolate milkshake.

Its now a wait till the new cells engraft. This is easy to detect because the chemo has destroyed my marrow, my white cell count had been at zero since 17/2/21and once engraftment occurs and I start making my new blood my white cell counts will rise. This could happen ad early ss this Thursday but we are praying thst it be by the end of the weekend. Till then best wishes Warwick

[Kinsale]

Thanks so much for the update Warwick. I’m sure you will get good news re your blood counts. You’ve done amazingly so far. Mark

[MPN-MATE Admin]

Morning Warwick...

Just having read your last Post, like you I shall be anticipating your findings of this weekend...

On another matter that might be of some interest Warwick...

Recently, another new member named Misty, has commenced seeing another MPN Specialist here in Sydney, (Prof. Manoharan). I spoke with him at length yesterday, concerning his findings about 'Sticky Platelets' and how he deals with them...

Hopefully, he will forward that Paper to me shortly, and it is also a procedure that he performs regularly with some success, he says...

I will Post as soon as I receive the article...

Meanwhile buddy, take good care, and I will check in on you again shortly...

BTW, spoke with the Editor about the article I mentioned, and I shall know more about that shortly too...

Best wishes Warwick, talk soon...

Steve

[pj1963]

Hello Warwick,

I am following your journey with a keen interest. I want you to know I'm thinking about you and wish you well.
Paula

[Warwick]

Thanks for all the support its quite amazing yo have people in the UK through MPN Voive and all over the world supporting me.

I am now at day 28 post trsnsplant and whilst the declaration of Engraftment day has not yet occurred my white cells are edging up. My white cells are now 0.4 and nuetrophils are 0.3. Neutrophils of 0.5 are my ticket to be able to meet up with family and friends off the haemotology ward which for good reasons is close to quarrantine conditions 1 visitor at at a time and only 2 nominated visitors. The last week was characterised by nausea which is now getting under control but thankfully my headaches are subsiding as my cerebral brain fluid starts to equalise after my lumbar puncture leak.

I am having the routine bone marrow biopsy on Monday. I joked with the doctors not to take too much out as we have worked too hard to grow it they got the humour.

Its likely that my enlarged spleen is sucking up the new cells so the bone marrow biopsy will provide a more accurate tool to determine the progress of my new marrow. The docs are confident my spleen will continue to reduce to a normal size.

I enjoyed a night free of the IV drip for the first time. Iam back on the drip now as i will be having my daily blood tranfusion.

I am staying patient and each day i am thankfull to my unknown bone marrow donar and all the blood donars.

Best wishes and I hope today is a good day for you too.

Warwick

[MPN-MATE Admin]

Hey Warwick...

Yes, you have a great deal of support from all over the place buddy... & no doubt soon you'll have even more with the press & radio as they come to pass...

Talk more soon Warwick, and I am really happy to hear that things are improving so well...

Steve

[Lady in Red 01]

Hey Warwick,
Just wanted to wish you well on this journey, I have asked Steve how you are doing ?

Like you I have MF & Stem Cell is the only answer, Well Done to You !

Kind Thoughts & Wishes to You & Yours, Absolutely Brilliant you’re Sons having matching Hair Jobs..

It may become a fashion statement here in the UK with Hairdressers & Barbers Closed during our Second Long Lockdown due to Covid obviously...

Steve tells me you have commenced the 100 days of Isolation, Fantastic...

Stay Strong and never lose sight of the Ultimate Goal, no more MF
Just like our Jedi Warrior on the UK Forum.

Fabulous Achievement !!

All the Very Best to You.
Maria

[Warwick]

Hello everybody I am now at day 86 post transplant and enjoyed 6 weeks at home however about 2 weeks ago I started getting some stomach issues and my liver and kidney functions have dropped write off so when I came in for my regular Monday bone marrow team clinic meeting I was told the not go home go straight to ward c5a and Westmead my old home during the the transplant. I had a endoscope and they detected some mild graft-versus-host disease in my bowl and I am now receiving steroid treatment . I am not sure how long I will be in hospital for that it's probably going to be at least another week as they need to treat the gvhd and then taper me back off the steroids. I had a shot of g-csf which shot my neutrophil level from .7 to 3.0 in about 6 hours to assist with any infections from the endoscope pretty amazing jump when my levels especially my neutrophils had been struggling to get to 1.0 unfortunately this will be a temporary benefit and it is expected that my white cell level will go back to where it was in a couple of days. I remain confident in my medical team and strong that I will make a full recovery just with a little bit more patience then what I was originally hoping for. Thanks for all your support over the last 3 months it is amazing to have positive posts from all over the world I truly appreciate it. Best wishes Warwick

[Warwick]

Hello MPNers

Since my last post I left hospital but after 10 days 5 days at my parents house till my kids got over sniffles and 5 days at home my liver function deranged significantly again so I was readmitted to Westmead Public Hospital. Today is day 22 of my stay back at hospital

I am being treated for Graft Versus Host Disease to my liver and small intestines time will tell if its an acute attack or chronic. The good news is that at my last bone marrow biopsy all my marrow cells were donar cells whilst previous biopsies showed that despite the myeloblative chemo my old marrow represented about a quarter of the cells. That situation is called mixed chimerism. So keeping positive, over the last 2 months a war is happening in my marrow and its no surprise the liver and gut have been hit by some friendly fire ie Graft v Host Disease. Only time will tell the longer term effects but one thing is for sure in this process its important to focus on the now because tomorrow could have a whole number of differrent outcomes and variables which wastes time and energy if you take the time to dwell.

Myelofibrosis patients have one of the slowest recoveries from stem cell transplants as the new marrow has to grow through the scar tissue in the marrow space and some of the Luekeamia patients who had their transplants at the same time as me are recovering very well which is really encouraging.

Interstingly I am back on the Ruxolitinib as it has been found to reduce the inflammation generated by Graft v Host Disease. They have been increasing the dose slowly as they wean of the steroids. Hopefully by Wednesday I will be off Intravenous drugs and on oral drugs with good liver function which will be my ticket home.

My hospital ward has gone into lockdown complete visitor ban which is tough but thank The Lord for modern communications. Ive been streaming Euros Copa America F1 travelling the world on the internet and face timing family and friends. We live in good times.

Thanks for your interest

best wishes Warwick

[Laurenelle5]

Hi Warwick

You are doing amazing !! Keep strong very best wishes to you.

Linda x

[BCar]

Hi Warwick,

All the best with the recovery.
Hope you are back with your family and out of hospital soon.

Regards,
Brendan

[SilverET]

Hi Warwick,

Wow, what a ride you have been having. I've been following your story through Steve's MPN site. It sounds like your body has been going through the wars with its new marrow cell inhabitants but hopefully the biopsy results showing all donor cells is an encouraging sign that the squatters are becoming the new permanent residents. You seem like you have a great team of medicos around you and I will keep my fingers crossed that things keep heading in the right direction for you. It is truly amazing what is achievable now and what the body and mind can cope with. Hopefully lockdown won't last too long and you will be able to see family and friends again soon.

Soldier on,
SilverET

[Alkemist]

Hi Warwick
Thanks for updating us on your progress. You are certainly having a long hard time of it with setbacks, repeat stints in hospital and now having to cope with the Covid restrictions. However your positive outlook is impressive and is a lesson for those of us with far fewer problems to contend with. Hang on in there, mate, and I hope you are able to get back to your family, soon.