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Tina Cullen's Stage 4 Cancer Journey

  • Cycle 3

      18 March 2025
    Posted by: Tina Cullen
    Main image

    The day after my last post (my actual birthday) I wound up in hospital for an overnight stay due to severe tummy pain. After a dose of fast acting fentanyl and then morphine, I came right. Looks like i picked up an infection. All looked OK so went home the next day.

    Thankfully this didn't affect my treatment last Wednesday. Treatment has gone well again, though I always get sleepy while receiving it. Not the greatest pic, but it's my reality.

    Tried a new med to help with eating and pain and was warned it would make me drowsy. It knocked the blimin stuffing out of me. Needless to say, I'm not taking that med anymore.

    I am thankful that I got to celebrate my 50th last weekend with the assistance of my steroids. To have one night where I could mostly forget about cancer, was the best! The fact my legs felt like dead weights all night, was a constant reminder.

    Take care until my next update

    Tina xx

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  • Round 2 - Cetuximab and Encorafenib

      5 March 2025
    Posted by: Tina Cullen
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    Round 1 gave me headaches, fatigue and a little loss of appetite in the first week. Week 2 I felt stronger and better than I have in a long time.

    Round 2 I had no headaches, just the fatigue and loss of appetite for this first week. It is definitely a walk in the park compared to chemo 😁👍I may have the beginnings of the rash, I am checkjng this with the oncologist on Tuesday.

    Round 3 is in a week's time.

    I've been very emotional lately, may have alot to do with me turning 50 tomorrow and our 10 yr wedding anniversary on Friday. There was a time when we didn't know if I would make it to my 50th.

    I don't want to sound like a broken record but we cannot thank you all enough for you kind donations. This is literally keeping me alive.

    Love the Cullens xxxx

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  • Bit the bullet- Cetuximab and Encorafenib

      13 February 2025
    Posted by: Tina Cullen
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    Without your kind and generous donations, today would not have happened. Thank you 😘

    Without my oncologist successfully obtaining the second drug free for 12 months (at a cost over approx over $120k), treatment would have stopped completely.

    As much as anxiety kicks in with a new treatment (along with a few tears, both happy and sad), I have so bloody much to be bloody grateful for and we dont take any donations for granted. I will attach a pic of the drugs you helped us purchase for this cycle (fortnight) $8600 and this doesn't include the treatment costs of $6k for today and next week. Crazy.

    Hoping the expected rash I'm going to get isn't too bad, and that this treatment will be a walk in the park compared to chemo, my oncologists words.

    Watch this space!

    Thank you everyone. Feeling very humbled tonight

    Tina xx (Bruce and Baylee xx)

    Bonus going forward is treatment can be done at Ormiston instead of Mercy in Epsom. Winning!!

    My oncologist said compared to the triple chemo I did, this will because walk in the park. Im pretty sure my oncologist is going to laugh when he hears the antihistamine I had with my pre-meds knocked me out for over 2 hrs!! I never slept doing chemo, maybe a little half-assed cat nap!! Crazy.

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  • Unfunded drugs Cetuximab and Encorafenib

      8 February 2025
    Posted by: Tina Cullen

    Hey everyone

    We have received a mixed bag of good and not so good news.

    The great news is my oncologist has been successful in getting the drug Cetuximab free for me for 12 months. This is incredible as we could never afford both drugs.

    That leaves us with paying $45k for Encorafenib which we can do. The kicker is the admin/treatments costs to administer the drug and look after me during treatment is another $34k,which totals $80k for the first 3 months of treatment. This is almost doable 🤞

    After this period both drugs are free, however the admin/treatments costs of $5k per month remain. We did not take this into account.

    I am desperate to try these drugs as it is my last option with regards to any treatment. Things move quickly on the cancer journey with treatment starting this Thursday if we choose to go ahead. Not alot of time to make such a massive decision when we may not be able to afford the ongoing treatment when the drugs are finally free.

    Fingers crossed this comes off for me and family.

    Tina, Bruce and Baylee xxxxx

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  • CT Scan/Treatment Update

      30 January 2025
    Posted by: Tina Cullen

    Hey everyone

    So, it wasn't good news this time around unfortunately. Scan shows my cancer has spread to the lining of my lung and lining of my abdomen. Two of my liver tumours have doubled in size.

    Chemo and Avastin have not worked so this treatment has now ended. We wouldnt have been able to try Avastin without the support of everyone on this page. Thank you!!!!

    The only option left are two unfunded drugs to be taken together, Cetuximab and Encorafenib.

    There is a 50% chance of success that this will either shrink my tumours a little or at least keep them stable, buying me more time.

    This comes at a cost of $6k + admin costs of $2500 approx for each drug per round, two rounds per month.

    We are contemplating whether we can afford this treatment. This Givealittle page will provide 1 month of treatment.

    Ideally we need 3 months of treatment followed by a CT scan to see if this is working.

    We have a lot of decision making to do over the next few days.

    Thank you all once again for your love and support. It leaves me in tears on a regular basis xxx

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  • Round 3 of Avastin/Round 10 of chemo

      17 January 2025
    Posted by: Tina Cullen
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    I'm feeling rather whacked after todays infusions. First time I've had Avastin administered in 30 minutes (previous infusions were 2 hrs then 1.5 hrs) followed by my usual 4 hrs of chemo.

    Been getting regular lower back pain, which is either the Avastin (side-effect) or pain from 10 rounds of triple chemo. Usual to have pain before now, so this may be finally coming to roost. I just pray my cancer hasn't spread further.

    I had another staging CT scan last Wednesday to ascertain if the Avastin is working. I will receive the results on Tuesday 27th January.

    I wanted to thank everyone who has donated once again, from people I see regulary to people I haven't seen for 20-30 years. I dont know what to say, but I promise to keep fighting this bastard with your help.

    I wanted to make a special thank you to the two individuals who have donated $5k each. This is completely mindblowing and left me in tears/shock for days.

    I'll update again once i receive my CT results.

    Love Tina, Bruce and Baylee xxx

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  • Avastin Round 2/Chemo Round 9 Update

      3 January 2025
    Posted by: Tina Cullen
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    Snap back to reality after an amazing month 🙄

    Round 2 of Avastin done and dusted at 8am this morning. 9th round of chemo in progress at Auckland Hospital.

    As much as restarting treatment wasn't something i was wanting to rush back to, it has to be done.

    Here's hoping for another relatively smooth round.

    Happy New Year to you all xxxx

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  • Update on first Avastin infusion.

      13 December 2024
    Posted by: Tina Cullen

    Bit hard to judge how the Avastin infusion has affected me. Mostly due to me needing another blood transfusion last Tuesday, which naturally gives you a boost.

    Overall, it seems to be my usual chemo side-effects have heightened just a little.

    Quite bloated, constipation (new side effect), diarrhoea, tiredness. So im pleased to say all in all I haven't had any major effects to deal with...... long may this continue.

    I am taking a break from treatment over Xmas/New Year so I can focus and enjoy this time with my family and friends.

    My next Avastin and chemo is on Friday 3rd Jan, with a CT scan all booked for Wed 15th Jan to see if the Avastin is working.

    To everyone who has reached into their pockets to help, we know this is a hard time of year.

    Bruce, Baylee and I will never be able to thank you all enough.

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  • Avastin Update (Unfunded drug)

      29 November 2024
    Posted by: Tina Cullen
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    With the help of this Give-A-Little page, we have decided to give Avastin a go, alongside my triple chemo treatment.

    I am booked in to have my first infusion on Friday 6th Dec at 8am which will take 2 hrs. I then go straight to Auckland Hospital to do my 5 hrs of chemo. The Avastin infusion is $6k, as is the second infusion on the 3rd of January. They then drop to $5k per infusion, which we cannot afford.

    My scan in mid-Jan should show if this combined targeted therapy is working.

    Avastin could give me an extra 6 months with my family and friends. It doesn't sound like much tume, but to me, it's a lifetime with Baylee and Bruce.

    I thank every one of you for helping to make this a possibility.

    Love Tina, Bruce and Baylee xx

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  • CT Scan update.

      18 November 2024
    Posted by: Tina Cullen

    Met with my oncologist today and with everything pointing to a negative result, we got good news!!

    Chemo is currently working much to my surprise. Some lesions on my liver have shrunk, my colon tumours have reduced slightly too.

    Doc can't explain why my tumour markers in my bloods are going upand down and had assumed chemo wasn't working also.

    This CT revealed I had a bit of cancer in my lower left pelvis bone, the chemo has treated it and calcified it which is why it is now showing on the CT.

    We are now looking at adding Avastin (unfunded immunotherapy drug) to the mix. Need to start that sooner rather than later as chemo on my cancer doesn't work for long. So enquiries with my oncology nurse will begin on Thursday f we getcthe go ahead, the Give-A-Little will be going towards this treatment, so a huge thank you to all, without this, we would not be able to afford it.

    Stoked to know I will have xmas with my family. Just a huge relief.

    Next CT scan is looking to be mid January ❤️💜💙🙌 Whoop whoop!!

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  • 12 Week CT Scan Day

      12 November 2024
    Posted by: Tina Cullen
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    So today I had my 12 week CT scan to ascertain if chemo is working or not.

    There is a delay with reporting but we should receive the results on Monday when we meet with my oncologist again.

    I'm terrified, as my recent blood tests indicate tumour growth, however this can be affected by chemo and other factors apparently ....

    Bruce, Baylee and I still cant thank you all enough for all of your support.

    We will keep you posted once we receive the CT scan results xxxx

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  • Change of plan

      21 October 2024
    Posted by: Tina Cullen

    After meeting with my oncologist today, they have decided it's time to book my CT scan to see if chemo is working or not. I have been dreading this. They are hoping to book the scan the week of the 11th of November so I can get another two rounds done.

    This means no portacath insertion until we know the result. They are doing the best by me, to avoid another procedure that may not be needed if treatment is not working.

    All I ask is for a positive scan result.

    Thank you all once again for your messages and support. Means so much.

    Tina

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  • Positive end to Round 4

      21 October 2024
    Posted by: Tina Cullen

    In the end the oncologists did reduce 2 out of 3 chemos as it was impacting my already struggling liver too much.

    What a difference. This is manageable!! I had one very rough day and bounced back over the next two days. Less side effects too!!

    I had hoped to work a few hours this week, but again this week is full of appointments. So far I have not managed to work at all since my treatment started. (I have a great boss who has been incredibly supportive!)

    Great news though, i am finally getting a portacath inserted into my chest on Wednesday for chemo treatments instead of having the picc line in my arm. This will remove a fortnightly Sunday appointment with the district nurse for dressing changes. Winning.

    Emotionally I'm all over the show which is to be expected. I have a great councilor but it's something else when you are trying to accept and prepare for inevitable. The effect on my family is impossible to describe but like me they are being so brave and putting a smile on their face for me.

    I have round 5 of chemo this Friday and hope to go out for a nice lunch with my family on Sunday.

    Have a great long weekend.

    Tina

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  • Prepping for Round 4 of chemo

      9 October 2024
    Posted by: Tina Cullen

    Ive quickly learnt that there is no predicting how things will be from one-day to the next.

    Due to my bowel obstruction, round 3 of chemo was reduced from 3 chemos to 2. What a difference!! I have managed to life live the past two weeks, this in my terms means going out for a cup of tea or lunch. Having energy to have people visit. Short walks around home, and I cant wait to take Baylee to the movies tomorrow. Truthfully, my mum is dropping us off and picking us up, as I am not able to drive too far.

    My bloods are all over the show, in particular my liver, so my chemos are currently under review as they may have been giving me too much and the liver is impacted by two of the chemos. It is quite the science to work out chemo quantities. I will find out on Friday when I turn up what I will be getting. I'm praying for a similar outcome as round 3, so I can continue to do things and hopefully get to work a couple of days.

    Thank you all once again for your continued support.

    Still numerous appointments each week, which is making getting back to work to part time difficult.

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  • Discharged from hospital

      23 September 2024
    Posted by: Tina Cullen

    After 8 days in hospital, the stent is doing its job and everything is working as it should.

    I am home now and need to learn a new diet to prevent the stent from blocking.

    All of this on top of trying to learn how to manage triple chemo.

    I feel like I am back to square one and haven't found my rhythm yet with chemo, more importantly when my 'good days' are. This is affecting everything, including work, I havent worked at all this month.

    Once again, thank you for all your support.

    It's so appreciated xxx

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  • Hospital admission

      17 September 2024
    Posted by: Tina Cullen

    After two days of abdominal pain, I was admitted to hospital on Sunday with a complete bowel obstruction due to one of my tumours.

    Luckily, yesterday I was fasttracked to have a stent inserted into my Colon to relieve the obstruction. This has been successful.

    This whole journey started so fast and feels relentless and has been very difficult for myself and my family to navigate.

    I appreciate every well wish and support from everyone. It is very humbling.

    Love Tina, Bruce and Baylee

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  • Round 2, Day 6

      11 September 2024
    Posted by: Tina Cullen
    Main image

    Firstly, Bruce, Baylee and I have so many of you to thank for your messages and support. It's continues to be an overwhelming time that is impossible to describe. Each day is very much up and down as we navigate this new normal with constantly moving goalposts!!

    But we will couldn't do this without your help, so thank you, thank you so much ❤️

    Wee Update.

    Round 2, Day 6. So far doing much better than my first round of chemo .... touch wood this continues. What a bloody learning curve that was 🤯 with a hospital visit thrown in, but all turned out ok.

    Managing 3 different chemos all with different side effects is the most difficult to work through.

    Walked my girl to the bus stop this morning and now having a rest ❤️ Taking the small wins 👊

    MY new look is sunnies, hat (loosing my hair now) and scarf to stop cold air going in my throat thanks to one of my chemos

    Will update again soon xx

    Love Tbird, Bruce and Baylee

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  • Thank you

      8 September 2024

    Just a quick note to say WOW and a massive HEARTFELT THANK YOU soo much for all your kind words, donations and messages. We are all very humbled by it all and will update in the coming days xx

    Thanks again xx

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