[Twi]

Any experience taking curcumin while on dex other multiple myeloma agents?

by Twi on Fri Oct 21, 2011 10:44 am

Hi everyone. I am hoping to gather information from those of you who might have experience taking curcumin while ON dex specifically (or other combinations of multiple myeloma agents). Of course we will talk with oncologist about my Mom being on curcumin. I was wondering if there is anything to be concerned about?

I've Googled the topic and found so much great information about how curcumin enhances (potentiates) not only dex but other chemotherapeutic agents (and for other types of cancer than multiple myeloma too). Lots of info from Dr. Aggarwal and others from MD Anderson Cancer Center - how exciting about the new study that began there by Dr. Orlowski on lenalidomide and curcumin!

So the idea of course is that curcumin will make dex or any other chemo agents work quicker, at a lower dosage, and be more effective in bring multiple myeloma markers down with least possible side effects...

I would love to hear anyone having good results with the curcumin, either on multiple myeloma agents (whether on standard or lowered doses) as well as being off of all agents and just on curcumin or other supplements.

I've yet to find specific/direct answers or experience about taking curcumin and dex at the same time - but, I may have missed something.

The other question would be if anyone has had problems with taking the curcumin at the same time as dex - is there anything to be aware of, watch for, etc. Or, if anyone has specific experience with a particular dose of dex while being on curcumin too.

I want to gather as much info on curcumin, dex, etc., for me and my Mom to share with her new oncologist next week. Her last oncologist was not supportive at all of her wish to focus on quality of life, not wanting to be sick with side effects, or her desire to try lower dosages or single agents due to her small size/weight and life long intolerance/sensitivity to meds (pharma and OTC). He dismissed completely anything about supplements being helpful to even just her general good health, let alone the multiple myeloma. He was unpleasant about it and made it clear it was his way or the highway. So, yes, she has been on the highway We hope the next one will be supportive of her wishes.

Thanks for taking the time to read this and for information/experience anyone can share!

Twi

[suzierose]

Re: Any experience taking curcumin while on dex other multip

by suzierose on Fri Oct 21, 2011 7:40 pm

Since there is nothing definite that says curcurmin is negative. I am taking it.
My decision was, if it can help ,,,go for it!!
Until they say it has negative impact...I am prayerful it will help.

I know this doesn't answer your questions...but just wanted you to know. I am taking it and how I made the decision.

[Twi]

Re: Any experience taking curcumin while on dex other multip

by Twi on Fri Oct 21, 2011 10:27 pm

Thanks so much for your reply. I was wondering if I had hit up on a some taboo subject or maybe everyone is just busy on a Friday.

I think it's great you are on curcumin and totally agree... I haven't heard negatives either, only positives related to multiple myeloma and to other cancers.

Concern is just if it would "enhance" taking dex in a way that would not be good... I've only read that it makes dex more effective related to multiple myeloma... and now that there is a study on 70 MMers at MD Anderson with lenalidomide (Revlimid) & curcumin... that says a lot about curcumin to me!

I'm just trying to get a sense, in particular, about what physicians think about using dex and curcumin at the same time... Are they okay with a patient doing this? Do they have concerns? Might there be a dose max/minimum (for either dex or curcumin? Do they think the studies re potentiation of dex by curcumin are a good thing? Any feedback much appreciated.

Just want to make sure we understand how curcumin could affect taking dex for multiple myeloma...

Thanks again for your reply - and wishing you great results with the curcumin, SuzieRose!

[Boris Simkovich]

Re: Any experience taking curcumin while on dex other multip

by Boris Simkovich on Sat Oct 22, 2011 2:21 pm

Hello Twi,

No, curcumin is definitely not a taboo subject here at The Beacon!

It's always difficult to understand why some subjects generate a lot of discussion, while others don't get as much attention. Sometimes it's the subject. Sometimes it's the timing. Other times you just can't tell.

I suspect in this case that the "Friday effect" you alluded to may, in fact, be playing a role.

Good luck!

- Boris.

[suzierose]

Re: Any experience taking curcumin while on dex other multip

by suzierose on Sat Oct 22, 2011 6:48 pm

Twi

Curcurmin is definitly not a taboo subjects. I think what happens here is that there is a diverse knowledge base. Some like the multiple myeloma experts have a lot and some patients have lots of experience but then there are others who have little information and are just learning. I think many times folks are apprehensive to respond if they are have any uncertainty that the response could not be fully accurate.

And many times questions, just as yours are highly individualistic...no one opinion 'fits all' it is simply a matter of choice based on what that person feels, expects or wants to see.
You will also find that multiple myeloma physicians can have a broad diversity of views when it comes to therapeutic choices. Just as no one therapy 'fits all'...the docs don't have a 'one fits all' philosophy either when it comes to drug regimens. There are lots of choices to be made by the patient and lots of diagnostic decisions made by the physician. Which is why it becomes critically important for the patient to not only be engaged but also an active participant in therapeutic choices ALONG WITH the multiple myeloma physician. Ask questions and keep asking...until the information is clear to you along with the choices available.

The Beacon did an article and there are several postings talking about curcumin which you may
find helpful at this link:
https://myelomabeacon.org/search/curcumin


What you find is that the number of views is a lot higher than responses ..so folks are interested and reading. Sometimes it can take weeks for a response in the forum so you are believe it or not ...having a GREAT response.

Hope this helps.

suzierose

[Jon]

Re: Any experience taking curcumin while on dex other multip

by Jon on Mon Oct 24, 2011 1:40 pm

Hi,
I'm about 45 days out from my 2nd SCT and getting ready to decide on my post-transplant meds. I'm definitely going to include curcumin. What dosage is recommended?

Thanks,

Jon

[Twi]

Re: Any experience taking curcumin while on dex other multip

by Twi on Mon Oct 24, 2011 2:39 pm

Hi again. Just call me antsy! Thanks for interacting w/ me SuzieRose! I definitely understand there is no one size fits all on anything (in life, let alone dealing with multiple myeloma!). Not looking for a definitive answer, but rather any variations of experience anyone has had with actually taking the curcumin while on dex or other med and any feedback related to that (good,not so great, indifferent).

Hopefully someone out there will be able to share eventually.

My Mom (multiple myeloma stage 2/3, IgG, kappa) started Doctor's Best Curcumin C3 Complex with Bioperine. She has worked up to 3000 mg. From all research and reading what works for others, this is the brand to get. It comes in 500 mg capsules and 1000 mg tablets. My Mom found the tablets hard to swallow so has been using the 500 mg capsules. The goal is to slowly work up to 8000 mg. I believe I have read that an contraindication would be if you are known to have gallstones. And, of course as always, important to let physicians know about starting a a new supplement. There is also great information that even in smaller doses the curcumin is working on the myeloma cells.

Thanks again for responding. Wishing you all well,
Twi

[Pamela Lussier]

Re: Any experience taking curcumin while on dex other multip

by Pamela Lussier on Wed Oct 26, 2011 9:10 pm

Hi Twi,

You could just email Dr. Aggawal. . I did. He will answer your question. i have been using 6 grams daily of curcumin for 4 months as my only maintenance med. So, so good.

Good luck with your mother's treatment. May she go into remission and stay there.

Best Regards,
Pam

[Twi]

Re: Any experience taking curcumin while on dex other multip

by Twi on Thu Oct 27, 2011 4:18 pm

Hello, Pam. Actually, in between my last post and seeing your post here just now, I did write Dr. Aggarwal. He responded within a couple of days. He was not direct in his response (as in, he did not say exactly that it is OK to take dex and curcumin at the same time) but he attached information related to how curcumin is a great chemosensitizer for numerous drugs without issue. Or maybe he was being more direct than I realize - doesn't matter, as he was able to give me what I needed, some reassurance that there is no scary contraindication to be concerned about. I've also heard from one other person with multiple myeloma who has taken/takes curc with dex.

If anyone is interested in hearing or seeing what Dr. Aggarwal sent me, please email me privately. I'm not sure about posting it here, if that is appropriate. But, i do want to share that he did write that the Bioperine in the curcumin is not a necessity. I was very surprised to read this.

Taking curcumin with Bioperine seems like a good idea though, since those who who have results with curcumin take it with.

Thanks a bunch, Pam, for your suggestion - we were evidently on the same wavelength.

Twi

[ninja performance]

Re: Any experience taking curcumin while on dex other multip

by ninja performance on Wed Nov 16, 2011 10:45 am

I took Curcumin through my 5 cycles of V/D/R.
I was DXd at 8.9 m-spike and 80% marrow, I also had a HGB of 6.3 and HCT of 20. I think total protein was 12.

In 5 cycles (2 weeks on 1 week off) I have dropped to 0.1 M-spike and my marrow biopsy was taken last Thursday, waiting results.

I believe the chemo and my new diet and supplement all combined worked to lower everything so quickly.

Per Day:
4 500mg curcumin - 1 monring/2 afternoon/1 night
4 1000mg Vit C - 1 monring/2 afternoon/1 night
6 500mg Chlorella - 2 monring/2 afternoon/2 night
6 500mg Spirilina - 2 monring/2 afternoon/2 night
1 1000mg Flax Seed - morning
1 Vit D - morning
1 1000mg L Lysine - morning
1 Glucosamine - morning
1 Mens Multi vitamin - morning
Vibrant Health Green Vibrance with apple juice - Afternoon

Also changed diet from lots of sugar and salt and processed food to Veggies and fruits and cut out processed foods and sugar/salt as much as possible. Eating good for me. And lots of water of course. No more coffeee and candy almost cut out.

-Chris