Thanks Mijji and TerryH, sorry I was not clear but I'm only considering complementary adjunctive alternatives. The research does not state otherwise but is seemingly a primary treatment study?
The cost does seem low however.
Best! BN
Forums
Re: Germanium sesquioxide for multiple myeloma
Hi Mijji.
Thank you for the links and Terry H, thank you for the information you sent too! Like you (Mijji), I am very interested in complimentary medicine and I do not reject all but human multiple myeloma clinical trials. In fact, when I go on pubmed and research ideas (as I will do with GS!), I know that the first studies will generally be on mice - that is the cutting edge of new research.
I followed strictly traditional medicine for almost 2 years after my diagnosis, (Velcade, Thalidomide, Dex) for 5 months, then ASCT, then Revlimid. But after the transplant, I got C-Diff and thought I might die of it. I had it 5 months and lost 20#. The Infectious Disease doctors would prescribe different drugs, but I started doing research (I have a degree in Natural Science/Mathematics) and found some probiotics that helped me. I have continued to take probiotics and have even found that if I must take an antibiotic (Infectious Disease doctors are very reluctant for me to ever take) if I take Saccharomyces Bouliardii within an hour of the antibiotic, my C-diff does not flare up.
The second thing that pushed me into doing my own research was my oncologist. I asked him about avoiding sugar and he told me that it is not just the sugar you eat, it is your blood sugar. He said I should find a good diabetes diet and try to keep my blood glucose low and steady. So, I started to do that -even bought a blood glucose meter and took readings after eating.
To make a long story short, I have had impressive results from my efforts. For the last 16 months I have eaten a ketogenic diet and I measure ketones and glucose at bedtime. Recently I started to take 6 g of Curcumin with bioperine and 1000 mg Omega 3 at the same time as curcumin. I drink organic Matcha Green tea every day and I take 1 tsp black cumin seed oil and I also take 500 mg of Berberine at noon.
I find it strange that some people are almost hostile toward complimentary medicine, but I am looking forward to doing some research on GS. Thank you!
Cathy
Thank you for the links and Terry H, thank you for the information you sent too! Like you (Mijji), I am very interested in complimentary medicine and I do not reject all but human multiple myeloma clinical trials. In fact, when I go on pubmed and research ideas (as I will do with GS!), I know that the first studies will generally be on mice - that is the cutting edge of new research.
I followed strictly traditional medicine for almost 2 years after my diagnosis, (Velcade, Thalidomide, Dex) for 5 months, then ASCT, then Revlimid. But after the transplant, I got C-Diff and thought I might die of it. I had it 5 months and lost 20#. The Infectious Disease doctors would prescribe different drugs, but I started doing research (I have a degree in Natural Science/Mathematics) and found some probiotics that helped me. I have continued to take probiotics and have even found that if I must take an antibiotic (Infectious Disease doctors are very reluctant for me to ever take) if I take Saccharomyces Bouliardii within an hour of the antibiotic, my C-diff does not flare up.
The second thing that pushed me into doing my own research was my oncologist. I asked him about avoiding sugar and he told me that it is not just the sugar you eat, it is your blood sugar. He said I should find a good diabetes diet and try to keep my blood glucose low and steady. So, I started to do that -even bought a blood glucose meter and took readings after eating.
To make a long story short, I have had impressive results from my efforts. For the last 16 months I have eaten a ketogenic diet and I measure ketones and glucose at bedtime. Recently I started to take 6 g of Curcumin with bioperine and 1000 mg Omega 3 at the same time as curcumin. I drink organic Matcha Green tea every day and I take 1 tsp black cumin seed oil and I also take 500 mg of Berberine at noon.
I find it strange that some people are almost hostile toward complimentary medicine, but I am looking forward to doing some research on GS. Thank you!
Cathy
-
antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Germanium sesquioxide for multiple myeloma
My own personal take from this discussion is not that you should take this germanium sesquioxide. To me, the learning is that we shouldn't forget interferon as a potential treatment option, particularly as a maintenance therapy option.
I mean, if I have a headache, I take an aspirin. I don't go out and chew willow bark, which happens to contain the active ingredient in aspirin.
Likewise, if I have an infection, I don't take capsules containing the mold Penicillium notatum. I take penicillin.
Now, if it's not easy to get actual interferon to use as maintenance therapy, I can see taking germanium sesquioxide instead. But you also want to do this with the conscious realization that you're basically engaging in a form of maintenance therapy, with interferon as the (most likely) active agent in that therapy.
Separately, Cathy, I really appreciate your sharing your experience with a ketogenic diet here in the forum. What I've particularly appreciated is your sharing the complete history of your experience, lab results and all. I know it's taken a lot of time for you to do that.
That said, I really think you should go back and look at the graph I posted here:
https://myelomabeacon.org/forum/ketogenic-diet-multiple-myeloma-t3393-100.html#p28051
I doubt I'm the only person who, after looking at that graph, has concluded that it's mainly the Revlimid that you took after your transplant that did most of the heavy lifting in terms of getting your light chain levels under control. You started the ketogenic diet started late in the game, when Revlimid had done most of the work, and you continued on Revlimid (off and on, and sometimes at a reduced dose) during the time that the ketogenic diet was ramping up.
Again, I think it's great that your sharing your experience with the diet, and, if you feel it is working for you, I have no intention of discouraging you from continuing with it. But I really feel you're misleading people when you say that the diet has had "impressive results."
I mean, if I have a headache, I take an aspirin. I don't go out and chew willow bark, which happens to contain the active ingredient in aspirin.
Likewise, if I have an infection, I don't take capsules containing the mold Penicillium notatum. I take penicillin.
Now, if it's not easy to get actual interferon to use as maintenance therapy, I can see taking germanium sesquioxide instead. But you also want to do this with the conscious realization that you're basically engaging in a form of maintenance therapy, with interferon as the (most likely) active agent in that therapy.
Separately, Cathy, I really appreciate your sharing your experience with a ketogenic diet here in the forum. What I've particularly appreciated is your sharing the complete history of your experience, lab results and all. I know it's taken a lot of time for you to do that.
That said, I really think you should go back and look at the graph I posted here:
https://myelomabeacon.org/forum/ketogenic-diet-multiple-myeloma-t3393-100.html#p28051
I doubt I'm the only person who, after looking at that graph, has concluded that it's mainly the Revlimid that you took after your transplant that did most of the heavy lifting in terms of getting your light chain levels under control. You started the ketogenic diet started late in the game, when Revlimid had done most of the work, and you continued on Revlimid (off and on, and sometimes at a reduced dose) during the time that the ketogenic diet was ramping up.
Again, I think it's great that your sharing your experience with the diet, and, if you feel it is working for you, I have no intention of discouraging you from continuing with it. But I really feel you're misleading people when you say that the diet has had "impressive results."
Last edited by TerryH on Tue Aug 11, 2015 4:54 pm, edited 1 time in total.
Re: Germanium sesquioxide for multiple myeloma
Hi Terry.
I appreciate what you write, and I am willing to be honest about my experience - including facts that do not fit my theory.
I noticed my kappas were coming down (but were all over the map) before I started the ketogenic diet, and wondered if it was the Revlimid, immunizations, or something else that impacted my kappa's. But, my cancer markers were at their absolute lowest (in the normal range) for several months after I started ketogenic diet, and the numbers have been stable hovering around the normal range every since I began it - and since I started the diet I take very little Revlimid. I cut my Revlimid to 5 mg once a week in June of 2014 and have taken that amount or less for about 14 months. The diet and Revlimid seem to be at least synergistic because my best results have been since I have been following the diet.
But Revlimid is not without risks:
Food and Drug Administration (FDA), "FDA Drug Safety Communication: Safety review update of cancer drug Revlimid (lenalidomide) and risk of developing new types of malignancies" (link to article at FDA website)
"Revlimid Maintenance Therapy: Three Major Studies Clarify The Benefits And Risks," The Myeloma Beacon, May 11, 2012
Quoting from the Beacon article:
Since I was treated with thalidomide during induction therapy and I had very elevated beta-2-microglobulin levels, I might be part of a subgroup that does not respond as well to Revlimid as others do.
I value your opinion very much and always appreciate reading your posts!
Cathy
I appreciate what you write, and I am willing to be honest about my experience - including facts that do not fit my theory.
I noticed my kappas were coming down (but were all over the map) before I started the ketogenic diet, and wondered if it was the Revlimid, immunizations, or something else that impacted my kappa's. But, my cancer markers were at their absolute lowest (in the normal range) for several months after I started ketogenic diet, and the numbers have been stable hovering around the normal range every since I began it - and since I started the diet I take very little Revlimid. I cut my Revlimid to 5 mg once a week in June of 2014 and have taken that amount or less for about 14 months. The diet and Revlimid seem to be at least synergistic because my best results have been since I have been following the diet.
But Revlimid is not without risks:
Food and Drug Administration (FDA), "FDA Drug Safety Communication: Safety review update of cancer drug Revlimid (lenalidomide) and risk of developing new types of malignancies" (link to article at FDA website)
"Revlimid Maintenance Therapy: Three Major Studies Clarify The Benefits And Risks," The Myeloma Beacon, May 11, 2012
Quoting from the Beacon article:
The same analysis also showed that Revlimid maintenance did not provide a survival advantage for: patients who were treated with thalidomide induction therapy; patients who had elevated beta-2 microglobulin levels; or patients who achieved a complete response prior to the start of maintenance therapy or placebo.
Since I was treated with thalidomide during induction therapy and I had very elevated beta-2-microglobulin levels, I might be part of a subgroup that does not respond as well to Revlimid as others do.
I value your opinion very much and always appreciate reading your posts!
Cathy
-
antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Germanium sesquioxide for multiple myeloma
Hi Cathy,
Thanks for your reply.
I posted a response in the ketogenic diet thread because I thought it would fit better there:
https://myelomabeacon.org/forum/post34452.html#p34452
Thanks for your reply.
I posted a response in the ketogenic diet thread because I thought it would fit better there:
https://myelomabeacon.org/forum/post34452.html#p34452
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