Hey Chris!
Happy Thanksgiving!!
So what are these awesome supplements that you are taking which you attribute some of your great response to? How's about sharing,the ones you highly recommend with the rest of us?
Are you using that Wobe Mugos..they showed to be effective for multiple myeloma?
https://myelomabeacon.org/news/2010/01/11/papayas-papain-and-multiple-myeloma-a-potential-adjunct-therapy-that-requires-further-evaluation/
What about Milk Thistle,curcumin or nutlins?
Just curious.
suzierose
Forums
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
suzierose wrote:
> Hey Chris!
>
> Happy Thanksgiving!!
>
> So what are these awesome supplements that you are taking which you
> attribute some of your great response to? How's about sharing,the ones you
> highly recommend with the rest of us?
>
> Are you using that Wobe Mugos..they showed to be effective for multiple
> myeloma?
>
> https://myelomabeacon.org/news/2010/01/11/papayas-papain-and-multiple-myeloma-a-potential-adjunct-therapy-that-requires-further-evaluation/
>
> What about Milk Thistle,curcumin or nutlins?
>
> Just curious.
>
> suzierose
Not a problem
I changed my diet, much healthier, lots of veggies, fruits, soy milk. No dairy, meats, processed foods including cerals and breads. I also supplement with Flax seed oil, curcumin 1 morning/2 afternoon/1 night, chlorella 2 morning/2 afternoon/2 night, spirulina 2 morning/2 afternoon/2 night, Vibrant Health Green Vibrance, Vit C 1000mg 1 morning, 2 afternoon, 1 night. I eat lots of fresh veggies like brocolli, carrots, salads (dark greens), squashes, avocados, cauliflower, greens, and others. And fresh fruits of all kinds.
-Chris
> Hey Chris!
>
> Happy Thanksgiving!!
>
> So what are these awesome supplements that you are taking which you
> attribute some of your great response to? How's about sharing,the ones you
> highly recommend with the rest of us?
>
> Are you using that Wobe Mugos..they showed to be effective for multiple
> myeloma?
>
> https://myelomabeacon.org/news/2010/01/11/papayas-papain-and-multiple-myeloma-a-potential-adjunct-therapy-that-requires-further-evaluation/
>
> What about Milk Thistle,curcumin or nutlins?
>
> Just curious.
>
> suzierose
Not a problem
I changed my diet, much healthier, lots of veggies, fruits, soy milk. No dairy, meats, processed foods including cerals and breads. I also supplement with Flax seed oil, curcumin 1 morning/2 afternoon/1 night, chlorella 2 morning/2 afternoon/2 night, spirulina 2 morning/2 afternoon/2 night, Vibrant Health Green Vibrance, Vit C 1000mg 1 morning, 2 afternoon, 1 night. I eat lots of fresh veggies like brocolli, carrots, salads (dark greens), squashes, avocados, cauliflower, greens, and others. And fresh fruits of all kinds.
-Chris
-
ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
And I searched for Wobe Mugos and could not find it for sale anywhere. Is it available?
-Chris
-Chris
-
ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
Chris,
I was unable to find Wobe Mugos as well.
It seems the FDA granted WobeMugos orphan status...which means it is patented now and unavailable without a prescription, I believe. I tell you big pharma works FAST. They are not going to allow essentially natural enzymes to be used without them turning it into some kinda profit in the oncology field.
"August 10, 2000 -- The FDA has approved the Orphan Drug application of Wobe-Mugos as an adjunct therapy for multiple myeloma. Wobe-Mugos is a combination of systemic enzymes, used successfully in Europe in conjunction with chemotherapy since 1977.
Numerous clinical trials have proven its efficacy in reducing the severity of symptoms, extending life span and improving the quality of life of multiple myeloma patients.
The orphan drug application was filed by Marlyn Nutraceuticals of Scottsdale, AZ. The company conducts extensive in-house research and also collaborates with numerous leading research institutions around the world to develop safe, effective and wholesome solutions to healthcare problems."
http://www.docguide.com//%252Ffda-grants-orphan-drug-status-wobe-mugos-multiple-myeloma
-----
The closest you can come to Wobe Mugos is this Wobenzym, (the dosing is a joke):
"Regarding the concentration of chymotrypsin activity being part of pancreatin it might be sufficient to substitute five tablets of WOBE-MUGOS taken three times daily with ten tablets of Wobenzym N taken three times daily....snip
Wobe-Mugos is manufactured by Marlyn's strategic partner, MUCOS Pharma of Germany. MUCOS has been at the forefront of oral enzyme research for over 30 years. MUCOS also manufactures Wobenzym, an enzyme formula sold as an OTC in Germany and as a nutritional supplement in the United States. "
http://n.wobenzymonline.com/wobenzym-research/systemicoralenzymesincancertherapy
----
It's interesting that you took 4GMS of Vit C....I read that it interferes with the boronic proteasome inhibitors. I take it you did not take it on infusion days or post 12 hours infusion?
https://myelomabeacon.org/news/2009/11/18/Velcade/
---------
I do like your supplement regimen and as they say 'the proof is in the pudding" ...since you had such an awesome outcome....
Your good response is a blessing!
Thanks for sharing.
I was unable to find Wobe Mugos as well.
It seems the FDA granted WobeMugos orphan status...which means it is patented now and unavailable without a prescription, I believe. I tell you big pharma works FAST. They are not going to allow essentially natural enzymes to be used without them turning it into some kinda profit in the oncology field.
"August 10, 2000 -- The FDA has approved the Orphan Drug application of Wobe-Mugos as an adjunct therapy for multiple myeloma. Wobe-Mugos is a combination of systemic enzymes, used successfully in Europe in conjunction with chemotherapy since 1977.
Numerous clinical trials have proven its efficacy in reducing the severity of symptoms, extending life span and improving the quality of life of multiple myeloma patients.
The orphan drug application was filed by Marlyn Nutraceuticals of Scottsdale, AZ. The company conducts extensive in-house research and also collaborates with numerous leading research institutions around the world to develop safe, effective and wholesome solutions to healthcare problems."
http://www.docguide.com//%252Ffda-grants-orphan-drug-status-wobe-mugos-multiple-myeloma
-----
The closest you can come to Wobe Mugos is this Wobenzym, (the dosing is a joke):
"Regarding the concentration of chymotrypsin activity being part of pancreatin it might be sufficient to substitute five tablets of WOBE-MUGOS taken three times daily with ten tablets of Wobenzym N taken three times daily....snip
Wobe-Mugos is manufactured by Marlyn's strategic partner, MUCOS Pharma of Germany. MUCOS has been at the forefront of oral enzyme research for over 30 years. MUCOS also manufactures Wobenzym, an enzyme formula sold as an OTC in Germany and as a nutritional supplement in the United States. "
http://n.wobenzymonline.com/wobenzym-research/systemicoralenzymesincancertherapy
----
It's interesting that you took 4GMS of Vit C....I read that it interferes with the boronic proteasome inhibitors. I take it you did not take it on infusion days or post 12 hours infusion?
https://myelomabeacon.org/news/2009/11/18/Velcade/
---------
I do like your supplement regimen and as they say 'the proof is in the pudding" ...since you had such an awesome outcome....
Your good response is a blessing!
Thanks for sharing.
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
Yeah, pharma companies are QUICK and greedy to get whatever they can out of cancer aren't they. What about plain Papain pills?
I took 4 grams, 1 morning, 2 afternoon, 1 night, of VitC every day during chemo and still do now. I guess it either did not effect the Velcade efficacy or maybe it would have done better. But there wasn't much room for better than I did so I am not convinced VitC would effect it. Maybe in someone that was not responding as well as me it would be an issue?
All the supplements I listed I took during treatment as well as the diet change, and still do now and will continue to do so to keep the multiple myeloma at bay.
-Chris
I took 4 grams, 1 morning, 2 afternoon, 1 night, of VitC every day during chemo and still do now. I guess it either did not effect the Velcade efficacy or maybe it would have done better. But there wasn't much room for better than I did so I am not convinced VitC would effect it. Maybe in someone that was not responding as well as me it would be an issue?
All the supplements I listed I took during treatment as well as the diet change, and still do now and will continue to do so to keep the multiple myeloma at bay.
-Chris
-
ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
Hey Chris,
Sounds and looks like your supplement plan is working..you got the lab results to prove it!
I was looking at the plain Papain tabs, and I am wondering whether there is something to the amount of chymotrypsin in WobeMugos, ( since it is the by product of trypsin activating chymotrypsinogen) in addition to the site at which the proteasome inhibitor(PI) carfilzomib binds on the proteasome is called chymotrypsin-like( CT-L) ...how coincidental is that?
Quote:
"In light of this evidence, it is safe to assume that specific interventions in multiple myeloma and other cancer cells with PI treatment regimens require accurate and specific modulation of proteasome activity to take advantage of the overtaxed need for protein degradation in these tumor cells without causing cytotoxicity in nontransformed cells."
http://bloodjournal.hematologylibrary.org/content/114/16/3439.full.pdf
I am unable to find anything with 40mg of chymotrypsin in it, seems most formulation only have 4mg or basically one-tenth of what was in Wobe Mugos.
However ...pancreatin. (pancrease enzyme).breaksdown chymotrypsinogen in pancreas to trypsin and chymotrypsin.
IOWs...Chymotrypsinogen is the inactive precursor of chymotrypsin in pancreas...it's activated by trypsin.
Sooooo, as the old folks say...there is more than one way to skin a cat!!
Take THAT greedy pharma!!
http://naturalfactors.com/ca/en/products/426/pancreatin-plus-enzymes
The only thing is pancreatin also has lipase (breaksdown fats) along with amylase (breakdsdown carbs).
Don't know how that might impact the overall goal of just using the proteolytic enzymes of trypsin and chymotrypsin as they did in the clinical trial. It could be that these 2 enzymes take care of the 'overtaxed need" for protein degradation and kill multiple myeloma tumor cells?
OTOH, Who knows, extra lipase and amylase just might help you lose weight, lol...who needs fats and carbs hanging around as excess weight right?
....
Heck every time I think about Melphan ..I get the heebee jeebies..so whats a little papain, pancreatin, curcumin, and vit C compared to that horrific choice.
I am not recommending anything, as each multiple myeloma patient has to make choices and decisions with their docs and choose what they believe is best for managing their disease.
Just sayin...there can be multiple routes to the same destination.
And it looks like your supplement plan was one of them!
Sounds and looks like your supplement plan is working..you got the lab results to prove it!
I was looking at the plain Papain tabs, and I am wondering whether there is something to the amount of chymotrypsin in WobeMugos, ( since it is the by product of trypsin activating chymotrypsinogen) in addition to the site at which the proteasome inhibitor(PI) carfilzomib binds on the proteasome is called chymotrypsin-like( CT-L) ...how coincidental is that?
Quote:
"In light of this evidence, it is safe to assume that specific interventions in multiple myeloma and other cancer cells with PI treatment regimens require accurate and specific modulation of proteasome activity to take advantage of the overtaxed need for protein degradation in these tumor cells without causing cytotoxicity in nontransformed cells."
http://bloodjournal.hematologylibrary.org/content/114/16/3439.full.pdf
I am unable to find anything with 40mg of chymotrypsin in it, seems most formulation only have 4mg or basically one-tenth of what was in Wobe Mugos.
However ...pancreatin. (pancrease enzyme).breaksdown chymotrypsinogen in pancreas to trypsin and chymotrypsin.
IOWs...Chymotrypsinogen is the inactive precursor of chymotrypsin in pancreas...it's activated by trypsin.
Sooooo, as the old folks say...there is more than one way to skin a cat!!
Take THAT greedy pharma!!
http://naturalfactors.com/ca/en/products/426/pancreatin-plus-enzymes
The only thing is pancreatin also has lipase (breaksdown fats) along with amylase (breakdsdown carbs).
Don't know how that might impact the overall goal of just using the proteolytic enzymes of trypsin and chymotrypsin as they did in the clinical trial. It could be that these 2 enzymes take care of the 'overtaxed need" for protein degradation and kill multiple myeloma tumor cells?
OTOH, Who knows, extra lipase and amylase just might help you lose weight, lol...who needs fats and carbs hanging around as excess weight right?
....Heck every time I think about Melphan ..I get the heebee jeebies..so whats a little papain, pancreatin, curcumin, and vit C compared to that horrific choice.
I am not recommending anything, as each multiple myeloma patient has to make choices and decisions with their docs and choose what they believe is best for managing their disease.
Just sayin...there can be multiple routes to the same destination.
And it looks like your supplement plan was one of them!
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
Our stories seem a bit the same, but I didn't have any bleeding from biopsy site. I did start with the cracked ribs and lots of pain, had gall bladder out but pain still there. After MRI they found out my bones looked like swiss cheese and I was a bit delerious from calcium leaking from lesions in my skull.
Went on chemo immediately and then did the stem cell transplant, I am now in complete remission and on a clinical trial study taking Revlimid (lenalidomide) (10mg) daily which will last for 3 yrs. I go back every 28 days to get new dosage of meds and they take labs and give me an infusion of zometta to help strengthen my bones.
As of now, I am doing awesome, fishing, shooting and come and go as I please. I too have a wife that was by my side through every step of the way and the support of many friends as family too.
I wish you the best and hope if you do have the stem cell transplant, it works as well for you as it did for me. It's no picnic, but for the 5 to 7 rough days, it gets better in a hurry.
Good luck and may God bless you
Went on chemo immediately and then did the stem cell transplant, I am now in complete remission and on a clinical trial study taking Revlimid (lenalidomide) (10mg) daily which will last for 3 yrs. I go back every 28 days to get new dosage of meds and they take labs and give me an infusion of zometta to help strengthen my bones.
As of now, I am doing awesome, fishing, shooting and come and go as I please. I too have a wife that was by my side through every step of the way and the support of many friends as family too.
I wish you the best and hope if you do have the stem cell transplant, it works as well for you as it did for me. It's no picnic, but for the 5 to 7 rough days, it gets better in a hurry.
Good luck and may God bless you
-
Charlie WV - Name: Charlie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 20, 2011
- Age at diagnosis: 63
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
We are going with the Gov't Pre existing (obama care) insurance PCIP. Which will cover the stem cell transplant. In 2012 the max out of pocket lowers to $4,000 and it even covers $10,000 in travel, food, and lodging for the stem cell transplant. It also covers prescription drugs. And all for only $250/month.
We have a consult with John's Hopkins Kimmel Cancer center December 15th. Then we will probably be looking at the SC BMT around the first of the year.
I am scared as heck, but excited at the same time.
Oh, how long does it take for this bone pain to go away? It seems to flare up even worse whenever I work out or do any type of physical activity.
-Chris
We have a consult with John's Hopkins Kimmel Cancer center December 15th. Then we will probably be looking at the SC BMT around the first of the year.
I am scared as heck, but excited at the same time.
Oh, how long does it take for this bone pain to go away? It seems to flare up even worse whenever I work out or do any type of physical activity.
-Chris
-
ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
Hi Chris,
Glad you are doing well ,and on your to sct. I had mine in march 2006. CR for 4 years.
But, my interest is in the health plan you mentioned. Can you tell me how to find out about it.
Thanks
Christina
Glad you are doing well ,and on your to sct. I had mine in march 2006. CR for 4 years.
But, my interest is in the health plan you mentioned. Can you tell me how to find out about it.
Thanks
Christina
-
Christina1952
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
Christina1952 wrote:
> Hi Chris,
> Glad you are doing well ,and on your to sct. I had mine in march 2006. CR
> for 4 years.
> But, my interest is in the health plan you mentioned. Can you tell me how
> to find out about it.
> Thanks
> Christina
So many people do not know about it. They (gov't) are actually disappointed that so few have signed up for it. It is for those whom can't get insurance due to pre existing conditions or have riders that exclude the condition. There are some states that literally have only a few dozen signed up. Some great hospitals are in network for the Stem Cell transplant including Duke and Hopkins/Sidney Kimmel.
https://pcip.gov/
To be eligible for the Pre-Existing Condition Insurance Plan:
You must be a citizen or national of the United States or lawfully present in the United States.
You must have been uninsured for at least the last six months.
You must have a pre-existing condition.
All states are different, but I will pay $250/month with a $2,000 deductible and as of 2012 a $4,000 max out of pocket.
This will only be in effect until 2014. This plan was put in place so that private insurance companies can get ready for the new laws that take place in 2014 that concern pre existing consumers. They will be forced to take pre existing and not charge an arm and a leg.
> Hi Chris,
> Glad you are doing well ,and on your to sct. I had mine in march 2006. CR
> for 4 years.
> But, my interest is in the health plan you mentioned. Can you tell me how
> to find out about it.
> Thanks
> Christina
So many people do not know about it. They (gov't) are actually disappointed that so few have signed up for it. It is for those whom can't get insurance due to pre existing conditions or have riders that exclude the condition. There are some states that literally have only a few dozen signed up. Some great hospitals are in network for the Stem Cell transplant including Duke and Hopkins/Sidney Kimmel.
https://pcip.gov/
To be eligible for the Pre-Existing Condition Insurance Plan:
You must be a citizen or national of the United States or lawfully present in the United States.
You must have been uninsured for at least the last six months.
You must have a pre-existing condition.
All states are different, but I will pay $250/month with a $2,000 deductible and as of 2012 a $4,000 max out of pocket.
This will only be in effect until 2014. This plan was put in place so that private insurance companies can get ready for the new laws that take place in 2014 that concern pre existing consumers. They will be forced to take pre existing and not charge an arm and a leg.
-
ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Return to Member Introductions / Personal Stories