Home > Blog > Avastin Round 7 and 8

Avastin Round 7 and 8

After 6 rounds of FOLFOX and Avastin, it was decided that the toxicity that was associated with the Oxaliplatin was starting to get too much, and so round 7 and 8 were only Avastin and 5-Fluoro-uracil.

I have probably lost about 50% of my sensation to light touch at the end of my fingers, and the effects of Oxaliplatin can continue to worsen for a period of time after stopping. Those effects are also cumulative with each round and generally considered to be irreversible. The irreversibility is perhaps a worst case scenario, as when had Oxaliplatin 5 years ago, I got to the point where I couldn’t touch type or do up buttons without looking at what I was doing, but after about 6 months I had recovered at least 95% of that sensation back.

The sequelae of this change in regime are twofold. Firstly, chemo should be much more tolerable. Oxaliplatin was the most toxic of the three agents I was on, and it was a big reason why I had to stop work last year; it took longer to recover from, and I never rebounded back as well between rounds.

Secondly, there is a real risk that response to therapy will change, and not for the better. There is every possibility that the response that was demonstrated on the last CT could have been due to Oxaliplatin, or the FOLFOX/Avastin combination.  Stopping it, and continuing on  5-FU and Avastin alone may very well have a much reduced efficacy. This is something that we won’t really know for a few more rounds. For the time being, my CEA levels  continue to slowly trend down, indicating that after two rounds of only Avastin and 5-FU, there isn’t a dramatic reversal in fortune. I think on first principles, its safe to assume that in the absence of Oxaliplatin, I am on a less effective treatment, how that actually works out in reality is something that only time will tell.

Overall, the last two rounds of chemo have been an improvement, although I haven’t recovered as quickly between rounds as I might have expected in the absence of Oxaliplatin. Hopefully over time this will improve.

This week we are down in Dunedin visiting Hannah’s parents and family and enjoying showing off Elise. She was well behaved on the flight down and seems to be adjusting to the somewhat abrupt change in temperature at the other end of the country.

In other news, I have had a CT recently which showed further promising results, of which I will go into detail in another post once I have cast my own eyes over the report and images.

Until next time…

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  1. Maree
    March 6, 2014 at 6:13 pm

    Hi Jared, Hannah and Elise, thanks for the update – we prayed for you last night at home-group and will continue to do so. I hope you have a great week in Dunedin :-) it’s
    one of my favourite places in NZ. Thinking of you all, love Maree xxx

  2. Janice Roseingrave
    March 6, 2014 at 9:05 pm

    Hi Jared, many thanks for your update. I ‘m sorry to hear that things are not progressing as well as they could have. It is nice that you are able to take time out with Hannah’s family and showing off Elise. I hope that you have a great time there, away from a hospital/medical environment.
    I was wondering if you would feel comfortable about meant mentioning CEA level numbers?
    Wishing you all the best and thinking of you constantly.
    Kindest regards, Janice

    • Jared
      March 6, 2014 at 9:09 pm

      I’m happy to mention, but the reason that I don’t is that it is very individual specific, and comparing one person’s CEA to another is not really helpful. Normal CEA is below 2.5, above that suggests malignancy. For a long time, even with a high tumour load, my CEA was not above 5. It has peaked at around 75, and now down to about 22. Other people will have levels in the hundreds, and others in the thousands, but those high numbers won’t reflect the ‘severity’ of the disease, its more about the trend. I.e. is it trending up, or is it trending down, or staying around the same. Sporadic high or low results should also not be read into too much. There is a saying in medicine is that it takes two to trend, basically meaning you need to see two or more results to indicate a trend. Hope that helps.

  3. Genelle
    March 6, 2014 at 10:39 pm

    You don’t know me but just wanted you to know that you and your family are in my prayers. Will pray about your chemo changes.

  4. Sharon Sharp
    March 7, 2014 at 8:49 am

    Hi Jared, you don’t know me either but
    hoping and praying for you always. Sharon

  5. Dyana Parore-Connell
    March 7, 2014 at 1:32 pm

    Hi Jared. Thanks for the update. Sorry to read that things are not progressing as they should. Hope the chemo helps you. Enjoy your stay in Dunedin with Hannah and Elise . A change of scenery will be good for you. Take care.

  6. Melissa Collins
    March 8, 2014 at 2:24 am

    Hey Jared. You don’t know me but I worked with Hannah for awhile last year when she was a Paeds Reg in my department . Such a lovely person. I had no idea of the hardships you and Hannah had been facing. She was always so placid and showed no stress and was so awesome to work with. Watching 20/20 the other night I cried. Not from sorrow, but from the bravery and determination, and acceptance of your fate! I am not a religious person but I pray that you get to see next Xmas and Elise’s first birthday. Such a dear sweet little baby you have. Congratulations x

  7. brittny
    March 9, 2014 at 1:23 pm

    hi jared im just wondering if you did look into alternative medicines which I didn’t really believe myself until Campbell live showed the story of the man with 4 weeks to live and vitamin c shots have now given him less then 1 % cancer cells sorry not preaching just would like to know from a doctors perspective seen as everyone I talk to seem to think doctors and pharmaceuticals know the effects both sides can cause / cure and still push for chemo :) any advice would be helpful as we are going through the same decisions at the moment

    • Jared
      March 9, 2014 at 5:02 pm

      Hi Brittny, thanks for the question.

      The short answer is that there is no evidence to suggest that high dose vitamin C works but there is some evidence to suggest a limited effect in alleviating some of the chemo side effects. Here is a great article that dissects vitamin C treatment.

      http://www.sciencebasedmedicine.org/the-return-of-the-revenge-of-high-dose-vitamin-c-for-cancer/

      Unfortunately the media is great at propagating these stories because they sound good. What happens is that a person receives high dose vitamin C and survives to tell the story. What we don’t hear from are the other 100 (or more, that is an imaginary number) people that also had high dose vitamin C and didn’t live to tell the story. This means that there is inherent selection bias in anecdotes about treatment. In actual fact the person who has the response probably had that response to chemo, or they might be one of the minority of patients whose cancer behaves differently for reasons we don’t understand.

      I have survived longer than most people, and more than what has ever been predicted, and its for no other reason that my cancer is clearly a variant of normal, I’m a statistical outlier.

      My advice is to trust the people who are knowledgable on the subject. Most of what the internet says is conspiracy, unless you know where to look, so don’t believe everything you read. At the end of they day, its your decision to make

      I hope that helps.

  8. March 14, 2014 at 12:54 pm

    That was a brilliant response, Jared. I sincerely hope lots of people have read it.

    Like you I am an outlier. I visited my specialist yesterday for a check-up. On each visit he tells me he had expected my cancer to have metastasised into other organs and my continuing good health is a surprise (yesterday’s CEA was 2.3). I had a poorly differentiated tumour, which was obstructing my colon and had affected 21 lymph nodes. I believe the fact that I’m still alive, 2 1/2 years on, is due to the competent surgical and oncology teams who cared for me. With my good general health and a lot of luck thrown in. I keep telling people this, especially those who recommend alternative medicine.

    I hope those CT scans continue to be good. Best wishes.

  9. March 23, 2014 at 9:11 am

    Congratulations on the birth of Elise and your up-beat style. Phil (a former colleague of your mum)

  10. Dee Karena
    March 28, 2014 at 1:31 pm

    Hi Jared, Thank you for letting us know what you’ve had to go through with the new medications and whilst it sounds scary, the positive is that it seems to be working. Good on you both managing to get away on a break. You will come back much refreshed and no doubt brimming over with love from the quota of hugs and kisses you’ll be getting from your family. LOL. Look forward to hearing what the new CT scan results work. Dee

  11. Kathleen
    March 30, 2014 at 8:56 pm

    You’re amazing.

  12. Tess
    April 7, 2014 at 10:32 pm

    Thinking of the little family with the biggest heart in Auckland; hope you are all enjoying Elise as she grows rapidly! Blessings

  13. Margaret
    April 12, 2014 at 10:21 pm

    Dear Jared – I live in Australia & have been following your progress since I first read about you when I was back home in NZ Oct 2013. Thinking of you & your beautiful family ….God bless you & keep you in the palm of His hand …Kia Kaha…praying for a complete return to full health for you. Love & blessings Margaret

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