Jobelyn (?) and other supplements

[Aleksandra Poland]

Dear All,

It seems like the state of my Mom is detoriating further. The last biopsy (non-representative) shows the 11 – 15% of blasts, and her doctor told her she’s heading AML. The news gave her a breakdown, you can imagine. Both Mom’s hematologist and the doctors from Vienna I contacted suggest only the supportive care, they reject chemotherapy, and there are no clinical trials accessible.

She tried Aranesp for a few weeks, but the doses were too small and there was apparently no response (we did it in private, on the base of the recommendations from Vienna, as her hematologist has no experience with erythropoetin and could not give us the proper numbers).

At the moment she’s in a local hospital, due to some trouble with the pancreas, where they got scared and administered 2 units of RBC and 2 of PLT, but nothing more is really happening.

We found a naturopath (TCM/hematology) doctor in Krakow, but it’s not sure yet he can consult her soon. So we just wait for whatever comes, and in the meantime keep on searching for any further support.

In my internet research I found some more supplements that could help. Below I put the list; maybe you have already any experience with some of them? Especially: are there any dangerous side effects?

> Jobelyn – extract from Sorghum bicolor(http://www.health-forever.com/index.htm)
> Resveratrol / Resquerin
> Pao pereira extract (PP40)
> Active Hexose Correlated Compound (AHCC)
> Sutherlandia frutescens
> extract of Coriolis Versicolor (PSK)
> Alive! (nature’s Way)

I send you all my warm thoughts and best greetings, Aleksandra

PS. I tried to contact directly another member of this list, Andrzej G. from Poland, but it seems he’s out of reach. Do you know maybe, how to find him?

[patti]

Aleksandra,

Sorry to hear about this change for your mom. I know it’s been so difficult for you to get her good care there. One thing I wanted to tell you is that while increasing blasts is never desireable, my MIL had greater then 30% blasts at her dx 2 1/2yrs ago and they figure by now it’s well into the 60’s if not higher. It’s been two years! So although her blast count is going up, it’s not an instant death sentence. They told my MIL she had AML over a year ago based on her blast count. I shrug my shoulders when they use the words AML now because here she still is. Yes, after all this time she’s finally starting to go downhill, but we had a lot of good times in that 2+ years. So don’t let those numbers scare you too bad. If your mom takes care of herself her body will fight it off for quite some time.

What’s going on with her pancreas? Is it pancreatitis????

I am not familiar at all with the supplements you listed. The only one I recognize is resveratrol but don’t know anything about it.

Hang in there. Don’t let those numbers discourage you or her. My MIL is living proof. It does take a fight to keep it down naturally but it can be done.

Patti

[Aleksandra Poland]

Hey, Patti,

That’s exactly what we try to do – ignore the bad message, since no medication decisions at all follow it and it is only about numbers, and this numbers frustrate Mom much more than her actual state. Her WBC are rather stable, RBC go up and down all the time, same for the PLT, but if not the stomach pains and the hospital, she’d feel quite ok. At least now she’s back home, and the transfusions had no side effects.

The thing with pancreas is still not clear – she had the computer tomography 10 days ago, which was interpreted as “no stones in the gale bladder, the pancreas enlarged” – but we got to know that although the equipment itself is very good, one should not trust the interpreting doctor. Now we hope to get another opinion in the private hospital in Krakow. Anyway, it would be great if the stone is really gone. And there are no signs of inflamation. So probably it’s not pancreatitis…

As for these supplements, I got until now only the Alive! (a combined extract of fruits, vegetables, mashrooms and probiotic bacteria, powder to mix with water or milk), since her diet is quite limited and we’d like to add with it all what she misses. Resveratrol seems to be safe as well (a strong antioxidant, good for the cardio-vascular system, the research is going on on its anti-tumor qualities).

About the other stuff I need to read more. It’s a pity nobody here tried it before. Especially Jobelyn and Sutherlandia look promising, since they’re supposed to improve the blood counts (“a natural transfusion”) and tonise the whole organism of elderly people. Well, but this is a description of the producer, and I’m not sure how much a Nigerian company or the online shop can be trusted… If you’d like, I can send you the links.

You asked before for my due date; it should be the end of April/beginning of May, and Mom is hoping very much to see her granddoughter. I hope it may keep her fighting. As soon as I have any new baby photos, I’ll send you a copy. It’s great to have something so important to think about, when it gets all hopeless with Mom…

Aleksandra

[Russ P.]

Patti, I was encouraged by your MIL’s beating the odds and hope it was a good QOL for her.
Since I was just dxd with AML – 35% blasts in the BMB, I was facing only a couple of months of life. Am too old for the standard AML induction chemo so opted for a clinical trial of Vidaza and PXD-101 that might give me a few more months of decent QOL. Prayers for your MIL and Aleksandra’s mom.

[Neil]

Hi Aleksandra,
Have 2 addresses for AndrezjG
andealek@mp.pl
mergus@polbox.pl

[patti]

Russ,

Mom’s QOL has been very good and until just recently did she really start to shows signs of physically wearing out. But when the signs started, they hit fast but then the decline was just slow and steady once we started seeing the outward signs. We’ve been able to see over the past year by watching her white cell count that her body has time and again pushed back the AML. Her whites would jump many thousands all of a sudden. She would double up her juicing efforts, etc. and they’d fall right back down within two weeks. It’s the only times the doctor admitted that she believed mom’s body was fighting down the AML on it’s own.

Last week we asked mom to stay at home and not go anywhere (store, church, etc) that would expose her to anything as her ANC’s were zero. Technically less then 100 since the machine can’t measure below that. Anyway, she decided she was going to church, etc. anyway yesterday. I told her she was a big girl and I wasn’t going to babysit her, it was just our best recommendation for her. Her words were this; “God has given me years beyond what they expected and for that I’m very grateful. I’ll not worry about anything else at this point.” She is secure in her salvation and quite frankly is tired of all of the hard work it takes to do natural medicine and is ready to be done. She has had time to let go of her daughter (as much as one can) and know that we will take care of her when the time comes. My heart is sad, it’s relieved, it’s a whole host of emotions, but for mom – she’s at peace. For which I’m so thankful.

For now, we’re praying for continued good health right to the end for her and we’ll be thankful for all the time God gave us with her.

All the best to you,

Patti

p.s. Aleksandra, out of curiosity I would like to look at those supplement pages. Always studying to add to my arsenal of good medicine.

[Russ P.]

To Patti, Alekandra and all the caregivers: My heart and prayers go out to you all. Like your MIL, Patti, my salvation is assured through my faith in Jesus Christ. I am looking forward to bowing before Him and seeing my mom and dad and all those who have gone before. Blessings to all.

[seekay]

Dear Aleksandra,

Have you looked here for information on phytochemicals that are proven anticancer agents? http://www.canceraction.org.gg/005.htm

There also is information on the website about European-based physicians and organizations that are knowledgeable about orthomolecular medicine.

You also might look at the orthomolecular medicine website for info on the other substances you mentioned. There may be information there.

Here is an extract from “The .005% Survivor” about Oxford Professor Michael Gearin-Tosh who was diagnosed with multiple myeloma and lived for 11 years after diagnosis, eschewing chemotherapy in favor of the Gerson Therapy and other natural, nontoxic treatments. I find the patient study very informative. It was written by Professor Gearin-Tosh’s student, Carmen Wheatley, who apparently runs the website and the UK-based organization with which it is affiliated.

Incidentally, Professor Gearin-Tosh passed away recently, not from cancer or his treatment, but from septicemia relating to a tooth infection he had that overwhelmed his body when he failed to take antibiotics soon enough.

Here is the excerpt with info on Resveratrol. Best to you–Christine

Gerson’s fruit and vegetable diet could be subjected to exhaustive analysis in the light of modern nutritional oncology research. One can go on. Resveratrol, a phytochemical in grapes, has been shown to induce phase II enzymes, such as quinone reductase, in the liver. (49) Phase II enzymes are the liver’s detoxifiers, and, as Gerson posited, efficient detoxification in the liver is essential in both the prevention and treatment of cancer. To summarize, however, the World Cancer Research Fund’s Report for 1997 lists the following compounds under continuing investigation in plant foods as having proven or potential cancer activity: dithiothiones, isothiocyanates, sulfuropanes, terpenoids, isoflavones, protease inhibitors, phytic acid, polyphenols, glucosinolates, indoles, flavonoids, plant sterols, saponins and coumarins. Gerson did not have any of this scientific knowledge, yet, empirically, he devised a method which ensured that a large range of these compounds would be delivered to the cancer patient intact and in pharmacologically active doses: the intensive fresh juicing regime, with 12 juices daily, one every hour. The juices, which are ‘whole’ juices in that the juicing method ensures virtually nothing is discarded, are also rich sources of Vitamin E, carotenoids and retinoids for which an extensive literature and clinical work have demonstrated differentiating and apoptotic effects in cancer. (26,50,51) Both carotenoids and retinoids regulate gap cell junction communication. (50,52) It is via the cell gap junctions that growth regulatory signals are transmitted. Since cancer cells have poor gap junctions and consequent impaired communication, their growth is deregulated. Carotenoids and retinoids can reverse this and thus interfere with their proliferation and growth.

[seekay]

You mentioned Vienna. Here is a contact in Vienna–

DR THOMAS KROISS
The Kroiss Cancer Center for Alternativ Cancer Therapy
Vienna, Austria
Tel: (+431) 982 5767
Fax: (+431) 982 6992
E-mail: kroiss@dr-kroiss.at
Web: bp.nwy.at/KroissCancerCenter/

I didn’t find any physicians or organizations in Poland.

–Christine

[Olajuwon]

Jobelyn was tried by a patient at Dana Faber Cancer Center some years ago. For details of the experiment click on: web page
Jobelyn is one of the most powerful natural antioxidants produced from Sorghum bicolor. The analytics details obtained from Brunswick Laboratory in the USA and a German Laboratory are also available at the website:
web page

[sarah]

Russ, beautifully said. I will never forget the days leading up to my husbands death and the moment he passed. He had the love of his family and the assurance of his salvation. He was at peace and God’s grace was sufficient. I watched as he entered the gates of heaven and was instantly in the presence of God. No more MDS. My heart aches daily for my loss. I do count my many blessings through the tears. God is good and loving and I know I will see him again when I am called home. I pray for strength for each of us as we face this disease. Soon I hope there will be a cure.

[Aleksandra Poland]

Dear All,

I haven’t written for a while again, I get aches when sitting too long at the computer – my Baby seems to hate Internet and lets me know it

It’s great to see your feedback and in the way you remind me that there’s more than just a direct “action” what can be done in the face of AML… I admire your faith and assurance, Russ. I believe my sister has this peaceful and trustful attitude and I envy her a lot all the support she gets from her deep faith. And to see a God’s love in all that happens to us is really a great wisdom – and a blessing itself. Russ, Sarah, thank you for remembering about us in your prayers. We do need them.

I wrote to Andrzej G. in the meantime (Neil, I’m very grateful for the contact data), but as I’ve heard he lost his Father some time ago and now I understand that maybe he feels more like forgetting about this whole tragedy than talking about it.

Patti, since these are all links to the commercial sites, I’m sending them to your priv address, I think it’s more appropriate this way. I must say that the research on these few supplements left me completely confused… One can not really say “it works” or “no, it doesn’t work” – anyway, the most important for me is the product safety. It would be so great to have a good ND to ask.

Christine, I’m still reading the materials following on what you suggested me; it’s a huge field and I feel quite lost. I took a look at the doctor in Vienna, but I’m not really sure yet if I’d like to contact him. The whole thing does not look very trustworthy to such a pragmatic type as me. I wish I could trust and believe more instead of searching for the “black and white” information. I know, the alternative medicine works differently than the academic one, but I still expect it to follow similar patterns – maybe it’s a mistake?

Finally, Olajuwon, thank you for your feedback as well, although I must say my quite European approach is to search for the data from more independent sources than given by the producer of a particular medicine (is the exchange of private emails really a “source”?!). I would love to believe that Jubi/Jobelyn is a wonderful product and we’d be ready to try it out… But I would like to know before that it is safe and not toxic, and the only German study I found on it dealt with its increased toxicity to the cardio-vascular system.

I’m so tired at the moment. It feels quite hopeless, and today even more, since Mom is at the consultations with her doctor hundreds of kilometers from here, and I can not accompany her. I wish you lots of strenght and hope, and send you my warm thoughts.
Aleksandra

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