Thank you everyone!
I have read and wept with tears of utmost appreciation to each and every one of your 608 comments.
January 9th i was back in Melbourne receiving my 3rd round of PRRT and chemo. Everything went well. Had great results with the scans (my overall well-being seems to mirror my scans-see latest pics) showing the tumuors have shrunk more noticebly in size.
Although fatigued with minor ache & pain at times, I felt much better than last year.
February 26th I was away for my 4th PRRT, just before leaving; tests showed that my blood count was low, so it was decided I skip chemo this round & just do the PRRT alone, followed by a blood transfusion upon return to NZ.
Treatment went ahead as planned and the scans showed continued shrinkage although still a considerable amount of disease remaining. After further discussion, Prof Rod Hicks recommended I return for another cycle for the best chance at prolonging my life, this was more PRRT than originally planned, as most patients do 4 cycles initially. Funds and blood results needed to be assessed before making the decision.
Back in NZ and went straight in for a blood transfusion. To what followed a reminder of what my colour used to be like, as my cheeks bloomed rosey red as they use to pre-treatment:)
My vomitting and weight-loss had stopped and the severe symptoms of Carcinoid syndrome had dramatically decreased, with me now being able to do normal everyday things without much or any assistance!
April 17th I was back in Melbourne for my 5th PRRT Treatment, everything went well & scanning showed a bit more shrinkage. Again my blood counts were low (had another blood transfusion) so I did not do chemo. As expected, fatigue and nausea followed but overall improving with hopeful and positive thinking puts me in a good place.
I cannot express enough how thankful I am to everyone for helping fund this treatment for me. I was diagnosed almost a year ago now(June 15 2017). The first couple of rounds of Chemo on their own had barely any influence on the Tumors but rather taxing on my general health, it seemed I was on a downward spiral real quick.
I believe wholeheartedly that thanks to PRRT, I am here and have been able to gain some of my life back and for this I am tremendously grateful to you all and the many people behind the scenes that have been helping my family and I throughout my journey.
PRRT has delivered on it's promise of improving quality of life thus giving me more time with my dear family. "How much time?" is hard not to think about, however considering that an Oncologist told me that without the right treatment I may only have months; being here right now to tell you my story, almost 12 months on, is a testament to the success of PRRT, and the amazing support we have been so blessed to receive.
5 cycles of PRRT, 7 weeks apart with ups and downs along the way has been a long and enduring process, though now leaving me with more good days than bad. My body has taken a big hit with all this treatment which is why I won't be permitted anymore PRRT until we get a gauge on how my body and the disease is responding, with a 3 month then 6 month scan scheduled to monitor any changes.
Decisions will be made from this next scan, & while PRRT is still my best hope; a contingency plan will be part of that discussion on what to do if it is temporarily off the table. Each trip over for PRRT costs about $8300 AUD, and that's not including flights & accommodation. Thanks to you and a great community of people close to our family I was able to afford the 5 trips necessary to be where I am today.
With the great result so far from PRRT, there is a possible outcome my Doctors have helped me to better understand. Because of the high grade and extensive spread of my tumours, and the volatile nature they are of. The fast and great amount of shrinkage my tumours have shown, means that they are also as likely to come back just as fast and great at any time, possibly within a year. So we are on high alert watching out for any spike in my symptoms, regular blood tests, and making sure any uneasiness is checked out.
I cannot stress enough how important it is to bring PRRT here to NZ so that it may be available the next time I and the many others will need it.
When I've asked how long can we treat this for? The answer is years, when I press more and ask more specifically about my time-frame, the answer becomes more vague. Seeing i'm almost at 1 year, I've asked 2 years? where they answer "likely" but asking anymore years than 2 the reply is a "...we'll see".
Because so much is unknown with my future, I now try not to plan too far ahead.This, along with moments of low energy and fatigue & the odd ache tends to make me upset. Being active in my families lives and living and loving in the present is helping me to stay positive.
Regardless, I'm thankful and grateful. Life has continued on in the Milo Family, I have been able to see-out almost a whole year and create more loving memories & start new ventures with my beautiful kids. Finally enrolled my daughter in gymnastics, she's well into her 2nd term & loving it and also started playing basketball, she has proved to be quite the awesome defensive player, I'm glad these are first's for her that I've been able to be apart of. My son is loving his rugby season so far, & also glad to be back at basketball. I'm so proud to see his growth into a young man as he's taken on responsibilities in his last year at primary school as a senior. My loving husband, while duties are more for him, I've been able to relieve him of the washing, vacuuming & the driving around of our kid's:) We've been camping for the first time this year, & were lucky enough to go a second time although that time was pretty cold. How beautiful New Zealand is!
Last year at my worst, I could not stand long periods without becoming breathless, dizzy, hot with a sudden flush & a throbbing head ache feeling ready to pass out. Thanks to PRRT and your generosity my condition has improved allowing me to continue spending quality time and make new and wonderful memories with my amazing family.
Please keep us in your thoughts and prayers. I'm due for the 12 week post treatment scan next month, hopefully more good news to come:)
God Bless You All
Love Elaine Milo
