[ninja performance]

Velcade didn't work this go - Vit C

by ninja performance on Thu Mar 22, 2012 4:05 pm

So after getting my original 8.9 mspike down to .1 and IGA 335 using Velcade/Dex/Rev, but not having the money for SCT, I waited almost 3 months and my mspike went back up to 1.7 IGA up to 2100.

So back on Chemo. Dr didn't want Rev this time so I could go straight to SCT without waiting. So just Velcade/Dex.

After 1 cycle my mspike is up higher to 2.3 and IGA up higher to 2700. This confused me. I eat very well, supplement, exercise. Doing some research I find Velcade has been proven ineffective if taken with Vitamin C. Well, I have been drinking Orange juice, grapefruit juice, and eating lots of fruits and veggies with Vitamin C. But even worse, I take 6 Grams of VitC per day. I was never told by either oncologist to not take VitC with Velcade.

So now I wasted a month on 1 1/2 cycles with no results

I am going to continue with Velcade/Dex without the 6 Grams of VitC and limiting my foods that have VitC.

I will keep everyone posted as the ONLY thing I will change is the high VitC intake. Kind of a little experiment.

Thanks for listening
Chris

[Nancy Shamanna]

Re: Velcade didn't work this go - Vit C

by Nancy Shamanna on Thu Mar 22, 2012 4:36 pm

Hi Ninja! You shouldn't have any green tea either, with Velcade. Somehow vITAMin C and green tea interfere with how effective it works. Hope it goes a LOT better for you from now on! I totally avoided citrus when I took Velcade.

[Art]

Re: Velcade didn't work this go - Vit C

by Art on Fri Mar 23, 2012 8:31 am

Good Luck Chris.
Art

[ninja performance]

Re: Velcade didn't work this go - Vit C

by ninja performance on Fri Mar 23, 2012 9:13 am

Thanks all.

Ran across this study this morning. They say they prove VitC and green tea is no problem with Velcade.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3215871/

[Nancy Shamanna]

Re: Velcade didn't work this go - Vit C

by Nancy Shamanna on Fri Mar 23, 2012 9:59 am

Hi Chris, In the article you referenced, there is not only a study showing no effect of Vit. C and green tea on the efficacy of Velcade, but there are also studies quoted that state that there could be a problem! I guess that 'in vitro' those substances can compromise the bortezomib molecules. Would you just assume that the study you quoted is definitive, or would you err on the side of caution and not take Vit. C and green tea? Just curious. Maybe one of the medical advisors on the site would know more about this issue??

[TerryH]

Re: Velcade didn't work this go - Vit C

by TerryH on Fri Mar 23, 2012 10:14 am

Thanks for pointing out that article, Chris. I know that people who have looked at earlier studies have said that the levels of vitamin C and green tea involved in those studies were much higher than typically seen in humans. But I've not looked at the studies closely myself, and I think at least one of the sources I read that summarized the earlier studies was affiliated in one way or another with Millennium, the company that sells Velcade.

On that point, it's worth mentioning that every single author involved in the study you linked to is either an employee of Millennium, which sells Velcade in the U.S., or Janssen, the company that sells Velcade in Europe.

[ninja performance]

Re: Velcade didn't work this go - Vit C

by ninja performance on Fri Mar 23, 2012 10:58 am

Terry, Wow, I did not look at that. That is crazy and "almost" unbelievable" but not seeing how most drug companies run these days. It's truly sad.

And I WILL error on the side of caution for sure. I was taking 6+ grams of Vit C per day. A LOT.

I am off it now one day before, the day, and 1-2 days after. And watching foods that are high in Vit C as well.

I stopped green tee and will pick it back up, with Vit C on my off weeks.

Thanks all

Chris

[ninja performance]

Re: Velcade didn't work this go - Vit C

by ninja performance on Fri Mar 23, 2012 11:40 am

Anyone looking up food data, I have found this site :

http://nutritiondata.self.com/

To be overwhelmingly helpful. Just type in the food, even prepared and fast food, and it give oodles of data.

Chris

[suzierose]

Re: Velcade didn't work this go - Vit C

by suzierose on Fri Mar 23, 2012 2:50 pm

Hi Chris!

Great link!!

thanks.

[ninja performance]

Re: Velcade didn't work this go - Vit C

by ninja performance on Fri Mar 23, 2012 4:07 pm

Here are some observations so far.

My initial 3 months of Velcade/Dex/Rev I have little to no site reaction to SubQ Velcade. After a few shots in the same arm into the 2nd week it would hurt a bit if I pushed on it, maybe slight pin size red mark. No biggie. I also did pretty well with it, tired yes, little achy, yes, PN after 3 cycles. But overall was pretty happy with side effects. But was not taking 6 grams of Vit C

This last go while taking 6 grams of vitamin C, I am only taking Velcade and Dex (dr says no rev close to stc), and EVERY shot right from the first one had a bad reaction. Large 2" X 3" red raised welt, warm to touch. Every shot 4 total did the same thing. The day of chemo shot afterwards I started feeling worse faster. And by night time it was real bad. Horrible aches from mid back down to my toes. And over all felt much worse than I ever felt on Velcade.

So I stopped Vit C on Wednesday. Had my Velcade shot and dex yesterday (thursday). Got tired that night. Legs were fine. Lower back didn't even get achy (normally did). Overall last night was pretty good aside from being tired. This morning and today, just a little tired. But overall feel Great. Even walked 1.2 miles to the post office and back at a very brisk rate. Just did some weight lifting.

And the injection site? A small almost unnoticeable pin size mark.

Very odd. Will keep updating. I will be getting another SPEP after this cycle which is ends after next weeks Monday and Thursday shots.

Chris