Wednesday, December 22, 2010

Chemo or not Chemo, that is the question?

This week we have been going through the decision to commit to chemotherapy, or not. We have been assessing the side effects, risks and benefits. Our recent NED result certainly shows we are on the right track and that I am responding to treatment, but it doesn't mean that the cancer is gone and I still have a high risk of tumour regrowth or metastasis spread. This is a long term journey and we need at least a couple of years of good results before the prognosis significantly shifts for the positive.

Unlike other cancers chemotherapy isn't particularly effective on sarcomas and the % improvement on my prognosis isn't great, but marginally good enough. Our aim is to eradicate the cancer from my body and the timing is right to use this treatment to assist with this. How it works is that they use drugs that destroy rapidly dividing cells, such as cancer cells, immunity, hair cells etc. The chemo drugs don't differentiate between the good and bad cells, so as a result side effects. Unlike the surgery and radiotherapy which are localised to the area of the tumour, chemo is systemic and treats and affects the whole body. More info about chemo here.

So based on all the information we have decided to commit to the treatment and my regime starts 10 January. It will involve 6 treatment over 18 weeks. I will be admitted to hospital for 3 days for each of the treatments and after 3 weeks and some recovery we repeat the cycle. The side effect are on the moderate to bad side of the spectrum, compared to other cancer chemo treatments.

The easy answer would have been not to go with the treatment, it will be pretty unpleasant. But for me probably the biggest factor in making the decision was the hypothetical question if in the future the cancer had returned and I asked myself if have I done everything possible to conquer this cancer and save my own life; what would I say.


  1. Shakespeare' s original response to my blog post subject line:
    To be, or not to be: that is the question:
    Whether 'tis nobler in the mind to suffer
    The slings and arrows of outrageous fortune,
    Or to take arms against a sea of troubles,
    And by opposing end them? To die: to sleep;
    No more; and by a sleep to say we end
    The heart-ache and the thousand natural shocks
    And makes us rather bear those ills we have
    Than fly to others that we know not of?
    Thus conscience does make cowards of us all;
    And thus the native hue of resolution
    Is sicklied o'er with the pale cast of thought,
    And enterprises of great pith and moment
    With this regard their currents turn awry,
    And lose the name of action.—Soft you now!

  2. Or try this lighter Monty Python version of to Bee or not to Bee, Eric the half a bee

  3. Good on you, it is a hard decision, facing another challenge when your body has already had so much invasion. From what you write I know your recovery seems slow to you - but seeing you the other day shows me you have massive healing abilities. People said to me 'short term pain for long term gain', it was good to keep that in my mind.

  4. After seeing a specialist at UCLA, I

    underwent 6 separate weeks of 24/7

    adriomycin and ifosfamide and have had

    absolutely fantastic results for metastatic

    synovial sarcoma. If you would like to discuss

    it further, email me at

    I've also been to MD Anderson for opinions

    and would gladly share all I have learned. By

    the way, the dose I got was MAJOR and my

    side effects were quite tolerable given the

    degree of lung metastasis last January. If I

    had not gone to a specialist, I doubt very

    much that the treatment would have been

    nearly as aggressive.

    Chris Davey
    San Diego, California

  5. I stumbled upon your site looking for information. My aunt has recently been diagnosed with this and has a massive (at least 10 pound) tumor in her leg and is just beginning the battle. She's at stage 3 and they don't want to give her false hope but also don't want her to give up hope. They think it has moved to her lung due to a spot they found there but won't know for sure if it has metastasized or if the spot is just a common lung spot until they see if the spot responds to the chemo. She's currently undergoing massive in-patient chemo, beginning tomorrow actually and will do 6 treatments over the course of 18 weeks. Then she does radiation and then surgery to remove.

    I have been reading your site and I do hope that her outcome looks as promising as yours. Best of luck to you and my sincere hope is that you never have to face this monster head on again.

  6. Dee - good luck with your aunty, it's tough but you can beat this desease even with mets and lots of people do. But your Aunty will needs lots of hugs and support. I have an info on sarcoma tab, check it out.

    Craig - contact you offline

    Lynn - thanks Lynn xx happy new year

  7. G'Day Gary,
    From across the tasman I'm sending you loads of positive thoughts and hugs. Kim

  8. I'm about to begin my first round of chemo at UCLA today. I also have synovial sarcoma. There's a paper written by Dr. Singer and Dr. Eilber titled "Chemotherapy is Associated With Improved Survival in Adult Patients With Primary Extremity Synovial Sarcoma", writted by Fritz Eilber, Samuel Singer, Jeffery Eckardt and others, which shows a 20% improvement with chemotherapy. So it seems synovial sarcoma responds better than other sarcomas. So I think you made the right decision.

  9. Sean, thanks for posting and the information. My oncologist said about 5% improvement on 5 year survival. Other reports I saw on the net indicated 10%, but many reports are not synovial sarcoma specific which seems to be more chemo sensitive. I will look up this paper. Another really useful comment that Elodie posted was that although chemo didn't stop the metastasis spread for her synovial sarcoma it may have slowed spread. "So they may have killed my aggressive cells and left the lazy ones alive which could explain why my tumors have been very slow growing" . Good luck with the treatment.

  10. Full article mentioned above here:


Thanks for your comments Gaz