Comments for Margaret's Corner https://margaret.healthblogs.org LIVING WITH SMOLDERING MYELOMA IN TUSCANY Sun, 10 Nov 2019 00:25:49 +0000 hourly 1 https://wordpress.org/?v=5.2.4 Comment on Treat so-called “high-risk” smoldering myeloma…Yes or No? by Attique https://margaret.healthblogs.org/2019/11/07/treat-high-risk-smoldering-myeloma-yes-or-no/#comment-71525 Sun, 10 Nov 2019 00:25:49 +0000 https://margaret.healthblogs.org/?p=16030#comment-71525 Hello guys
I have not officially been diagnosed yet but have a high kappa lambda ratio which is just over 100. I know this will be seen as mde and treatment should be started but I have no CRAB symptoms. The heamatologist said that this would be considered smouldering under the old guidelines. I do not want treatment obviously and have started my curcumin regime. I also take Boswelia and black seed oil.
My question is can the kappa ratio be elevated for any other reason other than mm?
I saw an interesting talk by Doctor Rajkumar from the Mayo clinic regarding treating smouldering patients. He said something about the involved free light chain being elevated due to dimerization. Also he stated that the new guidelines should not apply if the ratio has been elevated over 100 for many years but remained stable without CRAB.
My question the doctor was how do you know I havent been at this level for years? His answer was I dont but as you are a few points over the 100 ratio you need to start treatment.
It just doesnt seem right…please let me have your thoughts.

Attique

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Comment on Living with smoldering myeloma by Leland https://margaret.healthblogs.org/life-with-myeloma/#comment-71486 Fri, 08 Nov 2019 23:50:22 +0000 https://margaret.healthblogs.org/life-with-myeloma/#comment-71486 Not sure about the removal. Just above your post I see my update November 1. In case you can’t see it I’m repeating the numbers. Here are the latest on 10/29:

Total Protein (SER): down 9.2 to 8.3
LGG: down 3313 to 2840
KAPPA Light Chains: down 799.41 to 721.63
Gamma Fraction (SER) M-Spike down 2.70 to 2.40

My first original number was 2.30 when the first blood was tested 3/3. Went up to 2.70 and now is back down to 2.40. Wish your mom the best! I’m real pleased so far but I am just beginning this journey.

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Comment on An easy method for preventing the flu by Charlotte https://margaret.healthblogs.org/2019/10/28/an-easy-method-for-preventing-the-flu/#comment-71424 Fri, 08 Nov 2019 02:10:33 +0000 https://margaret.healthblogs.org/?p=16023#comment-71424 Elderberries could help minimise flu symptoms
24 April 2019

“the study showed that compounds from elderberries can directly inhibit the virus’s entry and replication in human cells, and can help strengthen a person’s immune response to the virus.

Although elderberry’s flu-fighting properties have long been observed, the group performed a comprehensive examination of the mechanism by which phytochemicals from elderberries combat influenza infections.

“What our study has shown is that the common elderberry has a potent direct antiviral effect against the flu virus,”

“It inhibits the early stages of an infection by blocking key viral proteins responsible for both the viral attachment and entry into the host cells.”

The researchers used commercially farmed elderberries which were turned into a juice serum and were applied to cells before, during and after they had been infected with the influenza virus.

The phytochemicals from the elderberry juice were shown to be effective at stopping the virus infecting the cells, however to the surprise of the researchers they were even more effective at inhibiting viral propagation at later stages of the influenza cycle when the cells had already been infected with the virus.”

The product containing elderberry is SAMBUCOL

https://sydney.edu.au/news-opinion/news/2019/04/24/eating-elderberries-could-help-minimise-influenza-symptoms.html

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Comment on Treat so-called “high-risk” smoldering myeloma…Yes or No? by Julie Z https://margaret.healthblogs.org/2019/11/07/treat-high-risk-smoldering-myeloma-yes-or-no/#comment-71397 Thu, 07 Nov 2019 14:42:54 +0000 https://margaret.healthblogs.org/?p=16030#comment-71397 Treating too early simply beats up the patient and starts the clock ticking on wearing out the drug. Same thing with maintenance after SCT – unless you need it (numbers are rising), you are mostly making yourself miserable to the tune of $1,000/month co-pay and cutting into the time Revlimid et al will work for you in the future. Although, an aside, now that we are in the future at our house we just discovered the fine print – if Revlimid is costing you more than 3 percent of your income, EVEN IF you are above the income cutoff for assistance, you can get an exemption and Celegene will cover your co-pay. We’ve paid for most of this year, but now – whoopee – we are getting it at no charge!!!

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Comment on Living with smoldering myeloma by Bhuwan https://margaret.healthblogs.org/life-with-myeloma/#comment-71396 Thu, 07 Nov 2019 13:00:15 +0000 https://margaret.healthblogs.org/life-with-myeloma/#comment-71396 Hi Margaret,

I am writing this post on behalf of my mother.
My mother was diagnosed in 2011 with plasmacytoma when she got fracture in D9 vertebra. Post Kyphoplasty radiation was given (44 grey) on D9 vertebra. Later on after completing radiation therapy the disease progressed to MM with M spike 3.0 g\dl (18% plasma cells in bone marrow).
Doctor then advised for Bortezomib with Dexamethason. Post completion of all cycles of Bortezomib. She was on maintainance with Lenalidomide with Dexa and has been in remission till 2019 with No M spike. Recently 2 months back in 2019 her Mspike re-appeared with value 1.1g/dl.
She is currently on Pomalidomide 21 days with one week gap and dexa 20 mg weekly. Her M spike is stable on 0.90 g/dl since last couple of months.

Now, I have ordered Dr Best Curcumin 1000 mg 120 tablets pack.

I want to know if is it ok to consume it along with her current medication going on that is Pomalidomide and Dexa. I would highly appreciate any other suggetion if you give for her good health.

Wish you a Good Health !!

Thanks and Regards,

Bhuwan

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Comment on No more asparagus for me!!! by Regina https://margaret.healthblogs.org/2011/06/09/no-more-asparagus-for-me/#comment-71337 Wed, 06 Nov 2019 04:59:00 +0000 https://margaret.healthblogs.org/?p=6875#comment-71337 Hello Margaret, it’s many years later, since your „ don’t eat or reduce your asparagus intake“. I have only just recently found your blog and reading everything. Are you still off the asparagus?

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Comment on Living with smoldering myeloma by Bguy3 https://margaret.healthblogs.org/life-with-myeloma/#comment-71319 Wed, 06 Nov 2019 01:34:33 +0000 https://margaret.healthblogs.org/life-with-myeloma/#comment-71319 Hi @ Leland,
I am from India. My mother is MM patient and I am currently planning to give her curcumin C3 complex with Bioprine.
Few days back I saw your recent post showing M spike reduced to 2.3 again. But, now I found that you’ve removed it. Is everything alright ? Could you please tell me why you’ve removed it.

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Comment on Living with smoldering myeloma by Leland S https://margaret.healthblogs.org/life-with-myeloma/#comment-71217 Fri, 01 Nov 2019 22:07:20 +0000 https://margaret.healthblogs.org/life-with-myeloma/#comment-71217 UPDATE: OK! Numbers are in. They are good! I am totally blown away.

I want to be clear though. I don’t expect this curcumin regimen to CURE MM. It is too insidious. It is there. The hope, as some have done, is to slow progression or inhibit progress so the harsh symptoms and/or treatments are not necessary later on.

Total Protein (SER): down 9.2 to 8.3
LGG: down 3313 to 2840
KAPPA Light Chains: down 799.41 to 721.63
Gamma Fraction (SER) M-Spike down 2.70 to 2.40.

These numbers were on the way up when I was diagnosed in June. 5 months on 6 gms per day of Curcumin C3 Complex w/bioPerene and they are going down. Guess what? I’m going to continue.

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Comment on Dirty dishes by Charlotte https://margaret.healthblogs.org/2019/10/14/dirty-dishes/#comment-71002 Thu, 24 Oct 2019 12:03:04 +0000 https://margaret.healthblogs.org/?p=16002#comment-71002 2 things:
1.

Sleeping on your side helps the brain’s lymphatics clear out waste and harmful chemicals from the brain
(yes the brain has lymphatics!)

For the lay people:
https://www.theguardian.com/science/neurophilosophy/2015/aug/22/how-to-optimise-your-brains-waste-disposal-system

The original research:
https://www.jneurosci.org/content/35/31/11034
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2.
Stressing cancer with spice

Abstract:
A new study reports how an experimental drug agent stops cancer cells from growing. A little over a decade ago, scientists first reported pentagamavumon-1 (PGV-1), an analogue of a molecule found in TURMERIC and that has been since discovered to have anti-cancer effects. In the new study, tests on cancer cells and animals reveal that these anti-cancer effects come from PGV-1 inhibiting a series of enzymes responsible for the metabolism of reactive oxygen species. This finding is expected to clarify how modifications to PGV-1 will lead to its use for cancer treatment.

https://www.sciencedaily.com/releases/2019/10/191023104613.htm

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Comment on Living with smoldering myeloma by Leland https://margaret.healthblogs.org/life-with-myeloma/#comment-70865 Sun, 20 Oct 2019 00:08:14 +0000 https://margaret.healthblogs.org/life-with-myeloma/#comment-70865 Hi Margaret,
I’m a 74 yr old male. Very good health. June 7 diagnosed with SMM. M-Spike 2.54, LGG K, Free Light Chain Ratio 210, Plasma 30-40%, clear PET CT. Was told the usual wait and see. “Watch and wait” thing didn’t set well with me. There’s got to be something I can do. I started reading vociferously. My wife, who’s had us on a Plant Based/Whole Food regimen for over 2 yrs, said she had read how curcumin was helpful for cancer. I searched and found lots of stuff about curcumin and cancer. I got specific and googled “curcumin and Multiple Myeloma” and bingo! I found Dieneke Ferguson’s story and your inspiration to her!!! Plus, the small Clinical Trials in 2003 and 2008 and lab reports @ curcumin. I didn’t hesitate. I grabbed the unused bottle of Tumeric/Curcumin 500 mg in our cabinet and started with 2 a day (1g) and immediately ordered online 2 bottles of the Doctor’s Best C3 complex with bioperene 1000mg caplets used by Dieneke and yourself. Gradually worked up to 6g per day. This amount was halfway between the 4g and 8g used in one of the trials. I leveled out at 6g because at 7g it started to cause some diarrhea. Already seem to be having some results maybe? If anything, you’ve given me some hope.
Pre-diagnosis:
3/3 – 5/20 ….47 days with no curcumin. M-Spike had risen 14.7% from 2.30 to 2.54.
Post-diagnosis:
5/20 – 8/6 … 78 days with 2 mos curcumin. M-Spike rose only 2.2% from 2.54 to 2.60.
Light Chains ratio down 210 to 138
8/6 – 10/29 … 84 days with 5 mos curcumin. ????

Next test is 2 weeks away. Will post the results. Thank you so much for all your information and inspiration. Meanwhile, my arthritis is better, my blood pressure which was a little high is now normal with no meds and A1C went down from 6.5 to 5.9!!

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