Yesterday was another shot of Velcade (1.3) in the arm. And as with last Thursday's shot without my high Vit C intake, no site reaction at all up to this point. By now, with the Vit C @ 6 grams/day it would be red, warm, and raised a bit in an area about 2" X 3 ".
Very odd that Vit C would do this, but it's the only thing I have changed.
-Chris
Forums
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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: Velcade didn't work this go - Vit C
:Hi Chris
Am wondering why the high intake of Vit C? I was told by hotline for IMF not to take Vit C or alpha Lipoic Avid on day of Velcade.
Discontinued because of PN. Have asked for sub Q injections which office is working on.
I wonder if all symptoms are decreased in this form as I had PN of the gut even tough only taking once a week.
Thank you, Maureen
Am wondering why the high intake of Vit C? I was told by hotline for IMF not to take Vit C or alpha Lipoic Avid on day of Velcade.
Discontinued because of PN. Have asked for sub Q injections which office is working on.
I wonder if all symptoms are decreased in this form as I had PN of the gut even tough only taking once a week.
Thank you, Maureen
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Anonymous
Re: Velcade didn't work this go - Vit C
Anonymous wrote:
> :Hi Chris
> Am wondering why the high intake of Vit C? I was told by hotline for IMF
> not to take Vit C or alpha Lipoic Avid on day of Velcade.
> Discontinued because of PN. Have asked for sub Q injections which office
> is working on.
> I wonder if all symptoms are decreased in this form as I had PN of the gut
> even tough only taking once a week.
> Thank you, Maureen
I was taking 6 grams of Vit C thru out the day, plus eating healthy which means lots of fruits and veggies that also have Vit C. I have an Oncologist/SCT DR at Hopkins and two oncologist/hematologists here in NC and SC. NONE of them told me to stop taking Vit C while on Velcade. And they even had me fill out Meds and Supplement sheets.
They just do not know about Vit C and green tea and Velcade.
As for side effects with Sub Q vs IV, can't help you there other than point to clinical trials that state the side effects are less with SubQ. I was on SubQ on my initial 3 months treatment using Velcade.
-Chris
> :Hi Chris
> Am wondering why the high intake of Vit C? I was told by hotline for IMF
> not to take Vit C or alpha Lipoic Avid on day of Velcade.
> Discontinued because of PN. Have asked for sub Q injections which office
> is working on.
> I wonder if all symptoms are decreased in this form as I had PN of the gut
> even tough only taking once a week.
> Thank you, Maureen
I was taking 6 grams of Vit C thru out the day, plus eating healthy which means lots of fruits and veggies that also have Vit C. I have an Oncologist/SCT DR at Hopkins and two oncologist/hematologists here in NC and SC. NONE of them told me to stop taking Vit C while on Velcade. And they even had me fill out Meds and Supplement sheets.
They just do not know about Vit C and green tea and Velcade.
As for side effects with Sub Q vs IV, can't help you there other than point to clinical trials that state the side effects are less with SubQ. I was on SubQ on my initial 3 months treatment using Velcade.
-Chris
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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: Velcade didn't work this go - Vit C
Well, didn't seem to matter with Vitamin C or not. I was of VitC and even steering clear of Vit C rich foods and drinks. Another cycle of Velcade 1.3 and Dex 40mg and Spep test.
Got my test results today. I kinda knew cause my bones have started hurting again. Mspike has risen again, up from 2.3 to 2.9. IGA up from 2700 to 3289 my other immunoglobulins are almost non existent due to the IGA crowding them out. The numbers are almost 0. This makes my system susceptible to infections and allergies. Starting on Revlimid ASAP.
Pushing back the SCT once again LOL. Maybe by July or August now. Was originally scheduled for Jan 2012. At least I am still here to complain about it
-Chris
Got my test results today. I kinda knew cause my bones have started hurting again. Mspike has risen again, up from 2.3 to 2.9. IGA up from 2700 to 3289 my other immunoglobulins are almost non existent due to the IGA crowding them out. The numbers are almost 0. This makes my system susceptible to infections and allergies. Starting on Revlimid ASAP.
Pushing back the SCT once again LOL. Maybe by July or August now. Was originally scheduled for Jan 2012. At least I am still here to complain about it
-Chris
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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: Velcade didn't work this go - Vit C
Hi Ninja!
Thanks for doing this observation journey it is quite insightful, particularly as regards VitC.
Sorry to hear your M spike is not declining. Do they ever do a FLA test. The SPEP can fluctuate due to inflammation from any source in the body. And since you were using such high VitC and discontinued it abruptly perhaps this is contributing to the SPEP and IG increase? Just a thought.
I really wish you had the option of being put on carfilzomib at this juncture. Doesn't Hopkins or your cancer center in NC have a carfilzomib trial? It seems like you would be a good candidate as a relapsed patient.
I am wishing you well and know that you are going to be here a looooong time. This is just a temporary setback...good news is on the horizon for you!!
Thanks for doing this observation journey it is quite insightful, particularly as regards VitC.
Sorry to hear your M spike is not declining. Do they ever do a FLA test. The SPEP can fluctuate due to inflammation from any source in the body. And since you were using such high VitC and discontinued it abruptly perhaps this is contributing to the SPEP and IG increase? Just a thought.
I really wish you had the option of being put on carfilzomib at this juncture. Doesn't Hopkins or your cancer center in NC have a carfilzomib trial? It seems like you would be a good candidate as a relapsed patient.
I am wishing you well and know that you are going to be here a looooong time. This is just a temporary setback...good news is on the horizon for you!!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Velcade didn't work this go - Vit C
Hi Chris,
I read this article( Dr Ken Anderson @ Dana Farber is one of authors) and it says that Vit C was shown to not work with the class of boronate proteasome inhibitors.(PI). The article sites 1gm of Vit C.
I wonder if Dr. Anderson still holds this opinion. It might be interesting to follow up with him since he wrote this article in 2009. Perhaps, there is new data now.
http://www.nature.com/leu/journal/v23/n9/abs/leu200983a.html
Carfilzomib is an expoxyketone PI.
Here is a link that shows the classes of proteasome inhibitors.
I read this article( Dr Ken Anderson @ Dana Farber is one of authors) and it says that Vit C was shown to not work with the class of boronate proteasome inhibitors.(PI). The article sites 1gm of Vit C.
I wonder if Dr. Anderson still holds this opinion. It might be interesting to follow up with him since he wrote this article in 2009. Perhaps, there is new data now.
http://www.nature.com/leu/journal/v23/n9/abs/leu200983a.html
Carfilzomib is an expoxyketone PI.
Here is a link that shows the classes of proteasome inhibitors.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Velcade didn't work this go - Vit C
No FLA just Spep. Pretty sure it's not due to inflammation since my IGA level is so high but all my other IG levels are now in the basement.
Hopefully the Revlimid will bring it back down. If not I guess we will try something else.
-Chris
Hopefully the Revlimid will bring it back down. If not I guess we will try something else.
-Chris
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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: Velcade didn't work this go - Vit C
I'm sure you already know this but will throw it out there anyhow: Green tea / Matcha is even more strongly contraindicated than Vit C when taking Velcade.
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Velcade didn't work this go - Vit C
When I was put on Velcade last year I was warned and given written instructions not to take any green tea or green tea supplements while on Velcade. Nothing was said about Vitamin C. I did some internet research and found some information on a study, I think it was from a university in Georgia, where they were looking for synergistic effects of green tea and Velcade and found just the opposite. The study found green tea completely neutralized Velcade and if I remember correctly they even discovered why it did so. I also came across some information on Vitamin C and Velcade that suggested it may have neutralizing effects on Velcade, but at relatively high concentrations that could only be attained by taking supplements.
The studies said the Vitamin-C levels the human body has from a normal diet without supplements would not approach the levels seen in the study. Also, the study said Vitamin –C is water soluble and passes out of the body relatively quickly, it has a short half-life. The concentration of Vitamin-C in the body can only be build up so high, tripling the dose through supplements does not triple the concentration of Vitamin –C in body tissues. Probably why a lot of nutritionist say you are throwing your money away taking mega high dose supplements. The take away from the study was the Vitamin –C from a normal diet is no concern at all. For any additional taken through supplements to be a concern, it would have to be taken in high dose on the day Velcade was administered, possibly even within a few hours of Velcade being administered. With this information when I was on Velcade I stayed off anything with green tea or green tea extracts. I ate a normal diet and would drink orange juice even on Velcade treatment day. I stayed off all supplements on Velcade administration days. The only time I took most supplements was during off cycles thinking what else about supplements neutralizing cancers drugs remains yet to be discovered. These studies and the drugs are still very new. Velcade worked well for my induction therapy bring me down from stage III with a very good partial response. Not that I am off Velcade I do take green tea supplements. There was a recent Japanese study that found the active cancer fighting ingredient in green tea kills multiple myeloma cells in vitro while leaving healthy cells untouched, and they identified how it does it. It destroys the cancerous cells membranes. Hopefully it does this in the body and not just in a Petri dish. Kind of interesting as I hear people talk all the time about green tea being strong anti-oxidant helping to prevent cancer, but this is the first I read it may kill existing cancer cells.
The studies said the Vitamin-C levels the human body has from a normal diet without supplements would not approach the levels seen in the study. Also, the study said Vitamin –C is water soluble and passes out of the body relatively quickly, it has a short half-life. The concentration of Vitamin-C in the body can only be build up so high, tripling the dose through supplements does not triple the concentration of Vitamin –C in body tissues. Probably why a lot of nutritionist say you are throwing your money away taking mega high dose supplements. The take away from the study was the Vitamin –C from a normal diet is no concern at all. For any additional taken through supplements to be a concern, it would have to be taken in high dose on the day Velcade was administered, possibly even within a few hours of Velcade being administered. With this information when I was on Velcade I stayed off anything with green tea or green tea extracts. I ate a normal diet and would drink orange juice even on Velcade treatment day. I stayed off all supplements on Velcade administration days. The only time I took most supplements was during off cycles thinking what else about supplements neutralizing cancers drugs remains yet to be discovered. These studies and the drugs are still very new. Velcade worked well for my induction therapy bring me down from stage III with a very good partial response. Not that I am off Velcade I do take green tea supplements. There was a recent Japanese study that found the active cancer fighting ingredient in green tea kills multiple myeloma cells in vitro while leaving healthy cells untouched, and they identified how it does it. It destroys the cancerous cells membranes. Hopefully it does this in the body and not just in a Petri dish. Kind of interesting as I hear people talk all the time about green tea being strong anti-oxidant helping to prevent cancer, but this is the first I read it may kill existing cancer cells.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Velcade didn't work this go - Vit C
I remember reading about these studies on the Beacon several years ago when they were first published. Here are the links:
Vitamin C Inhibits Anti-Myeloma Activity Of Velcade
https://myelomabeacon.org/news/2009/11/18/Velcade/
Green Tea Blocks Effectiveness Of Velcade Treatment
https://myelomabeacon.org/news/2009/02/05/green-tea-blocks-effectiveness-of-velcade-treatment/
A study published earlier this year shed some light on how green tea interacts with Velcade (second story):
https://myelomabeacon.org/news/2012/02/06/beacon-newsflashes-february-6-2012/
Vitamin C Inhibits Anti-Myeloma Activity Of Velcade
https://myelomabeacon.org/news/2009/11/18/Velcade/
Green Tea Blocks Effectiveness Of Velcade Treatment
https://myelomabeacon.org/news/2009/02/05/green-tea-blocks-effectiveness-of-velcade-treatment/
A study published earlier this year shed some light on how green tea interacts with Velcade (second story):
https://myelomabeacon.org/news/2012/02/06/beacon-newsflashes-february-6-2012/
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Jack L.
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