Pat Killingsworth Pat Killingsworth

Monday Morning Reflections

I hope everyone had a fulfilling weekend.

I wanted to start out the new week by sharing some updates I received by email this weekend.

First, I hope you take the time to read yesterday’s post.  The article dispels a number of myths associated with median life expectancy statistics.

One of the first questions anyone asks their physician after learning they have an incurable form of cancer is “Doctor, how long do I have?”

It isn’t a very satisfactory answer, but for newly diagnosed multiple myeloma patients, the truth is no one knows.

There are too many variables;  from when that patient’s myeloma actually became active, to how old they are at the time of diagnosis, genetic factors and their overall health.  Toss in the incalculable wildcard of how the dozens of  experimental anti-myeloma therapies in the research pipeline will ultimately shape the new myeloma survival landscape, and any answer more specific than “no one knows” becomes disingenuous.

For many, not only are current median life expectancy numbers irrelevant, they can also be limiting and misleading.

I hope you find yesterday’s post liberating and hopeful.  Let me know what you think.

A week ago I wrote about a mysterious new Australian anti-myeloma compound:

Might mysterious blend of Australian sea creatures really work against multiple myeloma?

 

To follow-up, I had the opportunity to exchange a number of emails with the inventor of TBL-12, Samual Grant:

Hi Pat,

We now we have 2 Studies, one at Mount Sinai (which has been going for over 30 months) and one at NYU…

We believe that Research is the Key for credibility. It is just a shame it cost so much, because this is what is really causing the high cost of Medication. Anyway, we are working to correlate all our information, then find out what is needed to do, in order to apply for Orphan Drug Designation. I think we are close, maybe still a bit away from approval as a Stand-alone Therapy, but I think we have enough ‘as a therapy to help reduce the side effects of conventional Treatments’. Because of the horrendous side effects with MM Drugs, I think this is a benefit and one worth pursuing. I will keep you in the loop  with this. Our main aim is to try to get the TBL-12 covered by Insurance Companies so it is cheaper for Sufferers and we can only do this with Orphan Drug Designation.
Take care and I will talk again soon.

Best regards,  Sam

After sharing a reader’s suggestion that in-Vitro testing of TBL-12 in combination with Velcade and/or Revlimid might be a relatively affordable way to test the new compound’s potential effectiveness, Mr. Grant responded this way:

Pat,

One of the things you mentioned was that an in Vitro study with Velcade and Revlimid would be useful, and we agree on that. To that end, we have already conducted an in Vitro Study at NYU on TBL-12/Velcade and I will send that you on a separate e-mail for your thoughts. Revlimid and the other Drugs will be done, but a little later down the track.

In the in Vitro Study, we found that not only did we virtually eliminate the side effects if we reduced the Dose Rate of Velcade, but we enhanced the performance of the Drug.

We believe that reducing side effects could be a major benefit (even though we are showing Cancer Cell Killing ability with TBL-12) as most Oncologists will want to stick with Major Drugs, therefore Combination Therapies with TBL-12 and Conventional Drugs would be the best of both worlds, especially in the early stages. If we can reduce the Side Effects and increase the Benifits of the Drugs, we could see some incredible results.

We are a small company, but we believe in our product, which is why we have chosen to do ‘Real’ Scientific Research on TBL-12. Any help and any suggestions are much appreciated, so any thoughts you have will be genuinely considered.

I have been involved in TBL-12 for 30 years. My Father was given six months to live in 1962; he passed away in 2009, so I know it works, and I believe if this is done right, TBL-12 can help may people. We have many people who rely on this product, and we owe it to them to do it properly and have it available.

I want to thank Mr. Grant for his openness and “outside the box” thinking.

I have already lined-up an interview with Dr. Jagannath, the principle investigator of TBL-12 at Mount Sinai in New York City.   I will meet with him when I attend the large oncology nurses convention in New Orleans later this spring.

Moving on to another ongoing topic, our guest nutritional columnist, Danny Parker, sent me this follow-up email recently, featuring a great smoothie recipe for those of you who battle therapy induced constipation:

Pat,

As this is the first time with the full package of supplements and Velcade, watch you body and reactions carefully.

I have big constipation with Velcade, but maybe you don’t. I had to have laxative smoothies on Velcade days and the day after.  Might go for something like that tomorrow and or the next day for breakfast to keep the belly happy.

DP’s Smoothies

Into the blender:
Two cups of soy or almond milk or regular milk
1 cored, but unpeeled apple
2 ripe bananas
1 cup of frozen blueberries and/or raspberries
Scoop of banana-orange flavored Fruitein protein powder*
Frozen or fresh papaya chunks (or frozen mango or peaches)
(Scoop of Miralax as needed)
Optional: scoop of yogurt

Serves two. Turn on the blender until thoroughly mixed. Serve with a straw. Better than any commercial smoothie and so damned healthy (apple, blueberries and papaya have helpful properties against MM), you’ll smile. Yummy!

* You likely don’t have that, but this is pretty good. Still, it is fine without it. Yogurt helps add richness.

http://www.amazon.com/Natures-Plus-Fruitein-Banana-Orange/dp/B0001VU8B4/ref=pd_sim_hpc_8

I’ll be thinking about you.
Danny

Constipation is an ongoing struggle for me.  Taking a lot of oxycodone for my bone pain and peripheral neuropathy doesn’t help.

But I am able to get by with a very high fiber diet–and by adding a lot of magnesium to my daily handful of supplements.

I will be running the next installment of Danny’s diet and myeloma series tomorrow.

Until then, feel good and keep smiling!  Pat