Support crew
3 February 2020
Forgot to include photo of my support crew at Auckland hospital, Round 12 of Folfiri 07/01/2020.
0 comments
|
Login to leave a comment
Raising funds to treat metastatic colorectal cancer
-
-
Timeframe extended
3 February 2020Talofa, Kia ora, Hello everyone,
Gosh it’s been a while. Christmas has come and gone and I can’t believe we’re now into the second month of 2020!!
At my last update on October 2019 I’ve just completed 6 rounds of Folfiri and 4 Cetuximab and had my mid-CT scan results. I’ve since done another 6 rounds of Folfiri and Cetuximab and another CT scan on 14 Jan. Meeting with my oncologist on 15 Jan regarding CT scan results showed spots on lungs have disappeared and those on the liver have reduced further (e.g. one tumour had gone from 27mm in June 2019, to 18mm after 6 rounds and to 12mm after 12 rounds). My oncologist was happy with the results and in his own words ‘the best results he could have hoped for’. However, whether the liver tumours are now operable depends on the liver surgeon’s opinion and a meeting between the liver surgeon, radiologists and other medical specialists took place on 22 Jan to discuss my case. Following that meeting they’ve recommended an MRI as the CT scan results was not clear enough for them to make a decision about surgery. An MRI is now booked for 11 February and follow-up meeting regarding next steps on 18 Feb.
Yes I will be undergoing further treatments, whether it’s a liver resection and possibly more chemo/cetuximab afterwards or more chemo/cetuximab until tumours are operable and then surgery or more chemo/cetuximab until it stops working. At the same time I am off work still on unpaid leave.
I have paid $46,000 already in private treatment costs for cetuximab (a drug that is currently not publicly funded) and which has an ongoing cost of $2,200 (after the drug cost is capped at $20,000) every time it is administered, which is every 2 weeks. This is a significant undertaking and I would like to thank each and every one of you who have made it possible for me to access this drug. Thank you. Thank you. Thank you.
With further treatments planned, I have decided to extend my page for another 6 months to help with associated ongoing medical costs. Cetuximab together with your prayers is working wonders and I would not have asked for help if it was not the case.
I thank you from the bottom of my heart for your help. God bless you.
0 comments | Login to leave a comment -
New update
27 October 2019God is good. All the time.
All the time. God is good.
Hello beautiful people.
Some news to update - on Wednesday Fetu, my two sisters, my dear friend Penny and I met with my oncologist regarding the results from my CT scan after 6 rounds of folfiri and 4 cetuximab treatments.
I am happy to report that the doctor was pretty pleased with the scan results. It showed the tumours in my liver have reduced in size, some by as much as half and my CEA marker has also come down. The scan however also showed some new spots on my lungs, which are too small to diagnose, as well as a couple of other anomalies which he will get checked out, but in general he thought my body was responding well to the current treatment, and for now the plan is for treatment to continue. Further down the track he is hopeful the liver tumours can be surgically removed, but further scans will be needed before then to check the spots on my lungs, and make sure no other tumours have appeared anywhere else.
On that note I just want to say thank you so much for your donations which has enabled me to fund cetuximab. I believe having this together with folfiri made a big impact on its effectiveness. With 4 treatments done we’ve paid nearly $30,000, a significant amount of money that we would have really struggled to come up with without your help. Thank you from the bottom of my heart. Your donation has made a difference and I am grateful to each and everyone of you. Our whole family is grateful to all of you.
From the time I found out I was Stage IV I have had this peace that only comes when you give it all to GOD and surrender. Through this journey I have been a receiver of HIS unwavering love in many shapes and forms .... I have met some of the best people and have found out just how truly loved I am by so many. Words will never be able to describe how thankful and blessed I am.
The photo I’m sharing with you is another example of God's amazing love shown by my EFKS Grey Lynn mafutaga aiga. This was taken at a Bingo Musika fundraiser event held on Fri 20th Sept - to date I am still speechless and overwhelmed by such an incredible and selfless act of love. Thank you!
#loveisbiggerthancancer
0 comments | Login to leave a comment -
Hello everyone
19 September 2019Sorry have been a bit quiet lately….
A lot has happened since my last update. I started on cetuximab (the unfunded drug) have done 2 rounds now, tolerated it pretty good. The main side effects are acne and so far (knock on wood) haven’t had any outbursts ….must be my beautiful Samoan genes 😊, thinning and possible hair loss is another which I again attribute to having thick long bushy Samoan hair because I still have some left (thank goodness!).
I’ve done 4 rounds of Folfiri and since my last update I have been in and out of hospital as with chemo my blood counts are pretty low so am prone to catch anything and I did! Lucky me 😊. We travelled down with the kids to Rotorua first week of Sept for my daughter’s (No.2) football tournament and I was admitted to Rotorua hospital straight away and had to stay back while the kids travelled back to Auckland on their own. I was having temperatures over 38 and 39 and yet all the tests came back ok so the doctors were being extra cautious and wanted to make sure I was all good before I was discharged. We travel a lot for my kid’s sports and this trip was definitely one for the books. We even took a photo as evidence! Life is what you make of it and we make the most of what life throws at us - the good, the bad and the ugly.
And during this time your donations keep coming in. Thank you thank you thank you! We are much grateful for your generosity and kindness especially as I have now taken leave without pay from work since end Aug. My recent treatment plan has been pretty tough and having been in and out of hospital a number of times I’ve decided to focus on getting through this and while I can spend quality time with my kids.
Together with your kind donations on our givealittle page there have been a number of feel good stories that I would like to share with you:
My 10 year old’s Room 19 class at Three Kings School did a bake sale fundraiser https://www.facebook.com/penelope.tevitatuatagaloa/posts/2923716624310993
An opposition team my son’s team played against presented our family with groceries, gift voucher and a beautiful card https://www.facebook.com/NorthernFootballFederation/posts/2956742704397415
https://www.facebook.com/AuckFootballFed/posts/2346152972145494
And not forgetting our lovely food roster people who continue to provide our family with yummy kai every weekend. Thank you!
Just amazing God’s love shown through the kindness in people.
Till next time, stay blessed.
0 comments | Login to leave a comment -
Thank you!
11 August 2019WOW!!! This is amazing!!!
We are just blown away by the love and support shown by so many… your generous donations, messages of love, offers of help, and ongoing support is really heartwarming.
Thank you. Thank you. Thank you. I now have funds to meet over half of my private treatment costs. Hooray!
To our EFKS Grey Lynn Church aiga, Rev Peni and Sinatala Leota, Rev Togafiti and Masae, church members and dear friends; our EFKS Vaivase-tai aiga, Toeaina Penisione Malolo Rev Peteru and Sieni Tone; my Auckland Council aiga, colleagues/friends, teams, ex-colleagues (incl. my Samoa MOF colleagues and friends); our Tevita, Taumate and Tuatagaloa, Lee Hang aigas, my dearest school, work and life friends/sisters near and far; my siblings’ friends who are part of our aiga; our children’s many affiliates – our WPSS aiga; our Three Kings School, Auckland Normal Intermediate, St Mary’s College, SMC football and Auckland Grammar aiga; our Auckland Futsal aiga; our TKU Dowsett football team aiga and the wider footballing community and their friends and families - and of course the many anonymous donors and kind strangers, and friends and family who shared this on Facebook and their friends … Fa’afetai tele lava!
Your generosity and love are greatly appreciated. We pray that our Heavenly Father continues to bless you and your families.
“It is more blessed to give than to receive” Acts 20: 35
An update on the treatment front – firstly apologies for the late update. My first Folfiri chemo really knocked me a bit, and I ended up back at Acute Oncology and spent three days at Auckland hospital. I was seriously dehydrated and weak. I’m home now although my guts (excuse the language) are still not 100%.... but hey, I’m still here and still kicking! My oncologist has recommended reducing the dose which is a relief and fingers crossed will be a lot kinder 😊. And I’ll now be starting cetuximab in the third round to see how I’ll cope with the lower dose first. Will update how that goes.
I leave you with a photo taken at my 1st Folfiri treatment with my day one supporter! People always comment on how good I look despite the treatments and everything else that’s going on. Well this is because of this guy right here who takes all my crap and a lot more. Thank you hun, I love you. Thank you too, to my beautiful children, Rosemary, Alisa, Toosavili, AJ, Eric and Shaun - you are my strength when I am weak!
This is also an appreciation post to all our support people and we have so many including Eva, my beautiful angels Penny and Carina, those on my meal roster, my doc friend Loana with your help on the medical side, and many others. You all know who you are and we can’t thank you enough. May God bless you all abundantly.
Have a wonderful week and God keep.
P
0 comments | Login to leave a comment
