Thursday 2 August 2018

What to add to Irinotecan + Avastin

Hi everyone,

I have a few questions I was hoping I could get some opinions on. My husband is receiving treatment for his second GBM recurrence-- currently on irinotecan and Avastin. I'm feeling unsure of what I can combine with this and I have a few specific questions:

- Is it safe to add Accutane? I have read on this blog that it could affect chemotherapy treatment but is that still the case with irinotecan since it uses a different mechanism?

- Would it be wise to consult with his doctor about adding the ALA-hydroxycitrate-naltrexone  treatment in addition to this?

- At what point do you change up additional treatments or supplements? He was using POH with a nebulizer but we stopped that after progression and I'm just not sure if we should continue it. Same with other supplements and prescriptions he has been taking. For instance, I'm not sure if he should continue taking metformin or if he should up the dose? (currently 500mg twice a day).

I'd be interested to hear anyone's experience with irinotecan/Avastin. So far, he's tolerated it well and it has improved a number of his symptoms but he has experienced some confusion and he will be getting an MRI soon. I'm desperately seeking clinical trials that he might qualify for but between the Avastin treatment, his speech issues and the fact that he'd technically be on his third recurrence by the time he's even eligible for a trial, our options for anything promising are incredibly limited. His doctors have told me that a vaccine type of therapy might be the most effective. I'm considering IOZK after reading some posts about it here and doing some research.

My husband is 32, we have two young kids and I fear that we are quickly running out of options. Thank you again to all who share here!

Abby
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7 comments:

  1. Semyon2 August 2018 at 12:29

    1. You can try an increased dose of POH. My mom is now taking a dose that is almost 3 times the standard.

    2. Probably, Metformin 2 x 500 mg per day is very small. Usually the recommended dose is 2х1000mg per day.

    3. I recently found this study on the synergy of Irinotecan and Pitavastine:
    2014 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3898565/
    "In particular, we found that the statin, pitavastatin, effectively induced cellular autophagy and suppressed tumor cell MDR-1 protein, to impressively enhance the potency of irinotecan, a topoisomerase 1 inhibitor used in cancer treatment [19-21]. This work newly identifies FDA approved drugs and drug combinations, notably pitavastatin and irinotecan, that may be useful for GBM treatment, and draws attention to the potential value of in vitro screening of approved compounds not currently used to treat GBM."

    4. My mother has been using the "Metablock" protocol (ALA-hydroxycitrate-naltrexone) for six months already. It seems to me safe and I see no reason why it should not be used.

    5. Have you thought about DCA? There is confirmation of the synergy between DCA and Avastin in a study with mice.

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  2. Abby_C2 August 2018 at 15:49

    Hi Semyon,
    Thanks for the info. That study is really interesting-- are statins generally safe in combination with Avastin? Something I'll for sure ask his doctor about.

    I have thought about DCA but my husband is already experiencing some right side weakness and some loss of sensation on that side and so I was a little concerned about the side effects of DCA but I really don't know too much about it. Does it work similarly to the Metablock protocol? If so, I'm not sure which would be best. And if I could even get DCA in the U.S...?

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  3. holly85 August 2018 at 07:54

    Hi Abby, My son took DCA for 9 months and it was from "the prescription center" in Wisconsin. We got this through Dr Raymond Chang in Meridian Medical NYC. My son (22) experienced no side effect, we just rotated to other re-purpose meds after 9 months.

    Best wishes for your husband and your family
    Holly

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    Replies
    1. Sheena3 September 2018 at 15:49

      Hi Holly, did you need to travel to Wisconsin to get the DCA? We are looking at using it for my Mom - we are in California. Thank you!

      Delete
    2. Stephen W3 September 2018 at 17:13

      Many people are ordering DCA online and getting it delivered by mail. I purchased DCA from

      https://pharma-dca.com/

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    3. Sheena5 September 2018 at 13:16

      That's very helpful, thanks Stephen!

      Delete
  4. Abby_C6 August 2018 at 09:49

    Thanks Holly! Great to know. I hope your son is doing well. Did you have to travel to see Dr. Chang in person in order to get the prescription?

    ReplyDelete

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