Hi -
Met with the local oncologist yesterday to go over our MRI results. He assured me they were very bad. I'll share with you:
There is interval increased surrounding vasogenic edema. Abnormal increased FLAIR signal is seen extending to the splenium of the corpus callosum. There is also further craniocaudad extension of the vasogenic edema.
Current measurement of the ring-enhancing lesion: 5.7 x 4.1 x 3.8 cm in AP, transverse and craniocaudal dimensions (previously 4.3 x 4.4 x 3.1 cm) current measurement of the cerebral edema and abnormal T2-weighted signal 7.3 x 5 by approximately 6 cm (previously 4.5 x 5.0 x 3.5 cm).
You guys... I'm feeling many things. We've been on an Avastin alone approach (++ cocktail) since October. When I was at UCLA last month I spoke with Dr. Liao who asked why we stopped the Temodar if the MRI did not show progression? (It did not - the decision to halt Temodar was made in response to Dad's weakened condition, which in retrospect may have been due to the impact of radiation to the motion strip of his brain). We may have stopped Temodar prematurely. So now, 6-7 months later, I asked the local oncologist - can we revisit Temodar? He said that sounded like a rational approach and sent us off with a script and with our Avastin for the 2 week interval.
The ONLY change made in the past few months was the addition of Valcyte late March. Could Valcyte cause false growth? Could Valcyte cause real growth? Is the timing more likely coincidental given Dad's at the 6-7 month window of Avastin use?
We're not eligible for the Polio trial as Dad can't walk. What else should I try...? Has anyone tried Temodar post Avastin failure?
Thank you all. You are my friends in this and I appreciate you.
xoxo Annie
I'm sorry to hear of your dad's progression Annie.
ReplyDeleteThe timing after Valcyte is probably co-incidental. Unfortunately the benefit of Avastin tends to be transient.
The tumor might be too large for Gamma knife, but perhaps he'd be eligible for Cyberknife? I can't recall if we've discussed Optune already?
Have not discussed optune. I plan to request it as we were saving that for a rainy day. Unfortunately we see Dr. Chamberlain who is out on leave. I think they are sending his patients to Mrgala, which is great but likely hard to get into him quickly. I don't remember why cyber knife was
ReplyDeleten't an option for us last summer. I'll look into both right away. Thank you Stephen.
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DeleteI am so sorry, Annie. I'm sure "feeling many things" is an understatement. My heart certainly saddened seeing your post. Remember, we never know for sure why it works, if it works, but sometimes it just works. Holding that vision for you and your Dad.
DeleteThank you Jude. I wish for things to turnaround for all of us.
DeleteHi Annie-
ReplyDeleteWe’re so sorry to hear about your Dad.
A few additional thoughts:
1) Induction of hypothyroxinemia with methimazole and T3 as proposed by Dr. Hercsberg- http://theoncologist.alphamedpress.org/content/20/1/72.full.pdf+html
2) Addition of Nivolumab– obtained via compassionate use(i.e., outside of a trial);
3) Additional radiation therapy if your Dad’s radiation max has not been reached and he could travel for treatments;
4) Pursue Optune or Nativis Voyager (Seattle based company)- sooner than later.
5) Perillyl Alcohol (?available as compassionate use and will be in trial with Dr. Chamberlain)
https://clinicaltrials.gov/ct2/show/NCT02704858?term=neonc&rank=1
6) High Dose Vitamin C infusions
https://clinicaltrials.gov/ct2/show/NCT02344355
I have no personal experience in any of the above, so perhaps others will comment on these ideas. We hope things quickly turn around for you guys.
Best,
Mike B.
Thank you Mike. Will keep you posted.
ReplyDeleteAnnie
Hi Annie,
ReplyDeleteSorry to hear about your dad, something we all dread. I just had a look at your cocktail and notice that you are using Chloroquinine (Plaquenil) In 2014 I was corresponding via email with Ben Williams and he advised me not to use Plaquenil because its hydroxychloroquine not chloroquine phosphate and the research had been done with the phosphate form of chloroquine. Best of luck.