Recent Forum Topics

Supplement to motivate my workout?

demerson — Tue, 08 Dec 2009 07:30:54 -0600

As you all know, I often credit two complementary therapies to fight cancer therapy side effects, help stay in remission, and generally feel better. These therapies are supplementation and exercise. Supplementation is relatively easy. Figure out what nutrition and supplements help our chemo/radiation torn bodies and then buy them at the local store or on-line.

Friend in UK needs help with alternative methods to arrest MM - please help send me tel # she will call you

YVONNETAYLOR — Fri, 18 Sep 2009 10:08:09 -0500

I have a friend in the UK who desperately needs someone to talk to. She has MM and is having a hard time finding survivors to talk to about alternative methods. She is trying the Gerson Therapy at the moment and the healthcare in the UK are not helping her at all as she wants to do alternative. She is afraid of chemo and x-rays as she was told the radiation is what has caused the MM.

Please please help - I am in Sarasota FL

Yvonne

Stem Cell Transplant - Dr. Berenson says don't do it, City of Hope says it's a must - HELP!!??

Wed, 12 Aug 2009 00:52:14 -0500

Hello. I've been doing tons of research on MM since May 21, 2009, when my dad was diagnosed. At first my dad, mom and I wanted to go the alternative route, but we were told by his Dr at City of Hope that he had to start chemo right away or his kidneys could fail. We jumped into the conventional treatment right away, but my dad has made major changes along the way (eating very healthy, cut back on work, no sugar, taking supplements, etc). We are now at another major crossroad as far as treatment decision though. We have 2 conflicting opinions.

most potent brand of curcumin and where to find it.

sshahab — Tue, 21 Jul 2009 15:26:53 -0500

Please advise, the best brand of curcumin. I am 44 yr old mother and have recently been told i have multiple myeloma stg 2 and require chemo followed by autologous transplant- however, from reading up about it- it seems i have smoldering myeloma and am hesistsnt about starting revlimid and would like to use alternate remedies.

thanx Sarah

B-M.org needs your input-

demerson — Fri, 12 Jun 2009 12:03:40 -0500

We would like to hear from you.

In an effort to make your experience on this site as valuable as possible, we would like you to answer a few questions about beating-myeloma.org. It will only take a few minutes.

Ruin Your Health With the Obama Stimulus Plan: Betsy McCaughey - Bloomberg.com

Fri, 22 May 2009 21:53:51 -0500

Posted by Bruce.

As seniors will be expected to die "sicker and quicker", how soon will "equal opportunity" be applied to non seniors with serious medical conditions ? The government GENOCIDALISTS decide "You're too expensive to live.".

http://www.bloomberg.com/apps/news?pid=20601039&refer=columnist_mccaughey&sid=aLzfDxfbwhzs

another article from Dr. Aggarwal on curcumin

demerson — Wed, 25 Mar 2009 18:54:32 -0500

If anyone would like a copy of this study emailed to them let me know- it is 10 pages, pretty dense stuff but you will get something from reading the study- David

Cancer and diets

Peter 06 — Mon, 09 Mar 2009 17:31:34 -0500

Incurable? desease.

Peter 06 — Tue, 23 Dec 2008 16:13:41 -0600

When we read most medical books, articles about myeloma we come across dreadful prognosis: “the disease is incurable”. We can find that five years survival in 60ties was about 12%. At a present time five years survival is about 34% and is improving. Five years survival means that 50% of patients will be alive after five years of diagnosis. We learn that sooner or later this disease will overwhelm us.

Stem Cell Worries

debby schyman — Fri, 05 Dec 2008 13:56:56 -0600

I will be having a stem cell consultation on December 22nd with EVMS in Richmond, VA. I'm very nervous about this and would like some suggestions/ideas regarding questions to ask the doctor.

I'm still not sure if I want to go through the procedure but my doctor is making me feel that it's the only choice I have. He said that sooner or later I'm going to have to do the procedure and it's better to do it now, rather than wait. My M spike is at 0.7.

Low dose dexamethasone

demerson — Mon, 27 Oct 2008 10:01:15 -0500

Below is a post from today's acor listserv from Hardy Jones. He mentions that his dex therapy is 8 mgs per week. This is the lowest dex dosage I have come across.

Lisa and others- perhaps this low a dose will make the steroids side effects easier to manage? David

PS- I have always attribute my leg weakness nerve damage- has anyone experienced the leg muscle weakness that Hardy refers to? Anyone know of a way to fix or improve the weakness?

To view my leg weakness go to

phone consultation

Lisa — Thu, 23 Oct 2008 15:19:26 -0500

I want to schedule a long distance phone consulation with an MM expert on my husband's current condition. I was thinking about Dr. Durie. Does anyone have any particular recommendations for MM doctors who do long distance consultations?

My husband's M spike has gone up since the summer from 0 (we enjoyed that for a mere 3 weeks) to 0.25 to 0.28 to 0.36. Our oncologist each time told my husband that the rise was "lab variation." Maybe, maybe not. I'd like to get another opinion.

Free Light Chain Test results-

demerson — Thu, 15 May 2008 08:56:52 -0500

My recent free light chain results were as follows-

kappa- 1.25

lambda- 0.64

kappa/lambda ratio- 1.95

According to my onc, the kappa and lambda numbers are "totally normal."Â However the ratio is slightly high.Â Does anyone have a possible explanation as to why my kappa and lambda values would be normal yet the ratio is high?Â DavidÂ

resveritrol

demerson — Thu, 24 Apr 2008 13:50:17 -0500

The study of resveritrol is moving from supplement companies to pharmaceutical companies.Â Does this mean that resveritrol is moving into the big time?

This is an excerpt from an article in the WSJ- DavidÂ

"Glaxo said it would keep Sirtris as an autonomous unit. "It fits in with our strategy of looking for the best new science, whether it's external or internal," said Mary Anne Rhyne, a Glaxo spokeswoman. "We think that this is potentially transformative science that could address diseases associated with metabolism and diabetes."

The purchase is the latest acquisition by cash-rich pharmaceutical companies that face looming patent expirations on blockbuster drugs. Two weeks ago, Japan's Takeda Pharmaceutical Co. agreed to buy Millennium Pharmaceuticals Inc., also of Cambridge, for $8.8 billion. Last year, AstraZeneca PLC paid $15.6 billion to acquire MedImmune Inc., a Gaithersburg, Md., biotechnology company.

Sirtris has demonstrated that resveratrol, when given in large doses, can lower the blood sugar of human diabetics in amounts comparable to existing diabetes drugs. Studies have also shown that resveratrol can extend the lifespan of obese laboratory rats. That finding has caused much excitement and has led some to suspect it might also extend human lifespans.

Resveratrol is already sold by several companies as a dietary supplement, and Sirtris wouldn't be able to patent the chemical itself. Sirtris is also studying several more-potent follow-on drugs that it could patent. The company has also received a designation from the Food and Drug Administration that would allow it to sell resveratrol exclusively for a rare muscular disorder.

In an interview, Sirtris's chief executive, Christoph Westphal, said the company was five to seven years from having a drug on the market. "If you can target genes that control the aging process to treat diseases of aging in a new way, that's an important insight," he said, adding that Glaxo was "making a very big bet on doing things differently."

more on cyclopamine

demerson — Thu, 21 Feb 2008 09:27:31 -0600

This is a portion of a post from Nick on the mmasupport list on his use of cyclopamine- I think Nick's attitude is indicative of several things-

1) Nick is clearly frustrated with the current state of conventional therapy-

2) All conventional therapies have side effects- in many cases, long term negative side effects-

3) The FDA's ability to manage mm therapies is limited at best-Â

Since Nick is frustrated with the state of conventional mm care, he is willing to take this substantial risk on a therapy called cyclopamine.Â The several studies by Ralph Moss that I am highlighting on the b-m.org forum/listserv outline through legitamate research that antioxidant support duriing chemo and radiation therapy may improve

-the effectiveness of the conventional therapy and

-the body's ability to handle the toxic side effects of the treatment (reduced side effects)

In this age of studies showing the effectiveness of lower doses of thal, dex, rev, etc why don't oncologists promote antioxidant support during conventional therapy?!

"Finally the comment about we don't know what
Cyclopamine will do to you after 20 years makes me
laugh.Â 20 year survival with myeloma...I will take
that!Â But really looking for a cure with Cyclopamine.
Â Now I will be a little morbid, if this really works
out for me, you will not be attending my funeral, you
will not be around to make it. My last comment is
that, I am not worried about what the FDA thinks about
Cyclopamine.Â I am not running a clinical trial here
where I need their approval.Â I am trying to save my
life, and the FDA has no right to tell me I can't do
what it takes to save my life."
Â Nick

Should patients undergoing radiation and chemo take antioxidants?

demerson — Tue, 19 Feb 2008 12:31:41 -0600

As I mentioned last week I received three studies from Ralph Moss' Cancerdecisions that he wrote on the subject of antioxidant therapy use during chemo or radiation therapy. Since these reports contain many issues that may be of interest to this group I will be posting excerpts each day that highlight an issue or two for possible discussion.

The first thing that needs to be stated is that

1)"Oftentimes, one is forced to decide whether or not to use particular antioxidants without having sufficient evidence to factually support such decisions. Whether one chooses to use or avoid them, one may fall into error."

2) "Second, I agree that, ideally, cancer patients should not self-medicate with antioxidants. While sane and sentient adult patients have an absolute right to medical autonomy and freedom of choice, cancer in essence is not a self-help disease. Treating cancer requires professional guidance â€“ although of course there is much that patients themselves can do to increase their quality of life and even their chances for long-term survival."

There are few topics in oncology that get oncs and survivors more fired up than this subject. Everyone agrees that we need more clinical studies done involving antioxidant support during conventional therapy. As members know many of us supplement for a variety of reasons but we all agree that more studies would help.

Beating-myeloma.org and other myeloma sites and blogs are designed to empower survivors and caregivers to manage their myeloma. No one knows this better than Ralph Moss. However, like more information on antioxidants, we all should agree we all need more and better info from our oncs- that treating myeloma requires professional guidence.

I will highlight issues discussed in Ralph Moss' essays each day for the next week or so- David

Consumers Warned of Lead in Some Turmeric Supplements-

demerson — Thu, 07 Feb 2008 10:44:25 -0600

I learned of this issue just now and Margaret is sending me the full consumerlabs report. I will report back what I learn. David

" Recent tests found a popular brand to contain 18.7 mcg of lead in a daily serving -- the highest amount ever reported by ConsumerLab.com. A daily serving of another brand was contaminated with 8.3 mcg of lead. These amounts are well above those to which people are normally exposed and should be avoided."

http://www.healthnewsdige...

My test results just in!

Margaret — Mon, 10 Dec 2007 10:55:06 -0600

Hi everyone! This is an edited version of the post I just put on my blog (http://margaret.healthblogs.org/) I was dreading the arrival of my test results since I took these testsÂ during a period of (a bit of) stress, I had just begun my new job etc. Well, HURRAY definitely replaces DREAD! But let me proceed by degrees.

I will compareÂ these tests, taken on November 19th,Â to the ones I took in September. My IgGÂ has dropped from 34.3 (September) to 27.8 g/L (now). The normal range isÂ 7-16 g/L. I have always been terrible at math, but thatâ€™s almost a 20% drop, no?

My IgA and IgM are as stable as rocks, havenâ€™t moved a bit, but that is ok with me, even thoughÂ both valuesÂ are very VERY low. The important thing is that they didnâ€™t go any lower!

My blood viscosity has dropped from 55 to 48 mm/hour, which is good. Keep in mind that this value has gone as high as 95! Creatinine is stable at 0.7, within the normal range; calcium is slightly up but still wayÂ within the normal range; albumin is still within the normal range (yippee). Bence Jones is NEGATIVE (yeah, yeah, yeah!). Beta-2 Microglobulin has gone down slightly, from 1.8 mg/L to 1.6 (normal range: 1.2-2.5 mg/L). Also good.

Not much really stands out in a negative sense. My serum iron, however,Â hasÂ dropped from 109 to 62 micrograms/dL (normal range 60-140 mcg/dL), so I will have to do something about that. Yikes. I see a few steaks in my near future. But my ferritin, which was 8 ng/mLÂ in September, is now up to 10 ng/mL (normal range begins at 15). Still low, but going in the right direction, at least. My m-spike is also stable.

Hope everyone is doing well. Take care, Margaret

Florence, Italy

How to talk to your doctor

demerson — Wed, 05 Dec 2007 12:56:21 -0600

The link below is to an article on something seemingly basic but something that we all need to be aware of-Â I was put off this article at first because the article starts out by saying "and sometimes its patients who fail communications 101."Â But like most everything that I have learned about conventional medicine is that conventional medical doctors are trained to think and act a certain way. And this way may be different than the way I think. Â Therefore it is in my best interest to figure out how to get the best medical care FOR ME.Â DavidÂ

"But communication is a two-way endeavor. And sometimes it's patients who fail Communication 101.

That's why growing numbers of patient advocates â€” including physicians who coach people on how to get better care â€” are teaching patients what to say, how to say it and when to listen during those precious few minutes in a doctor's office.Â

http://www.usatoday.com/n...

Vitamin D study shows its benefits for preventing colon cancer, but not for other cancers.

Cathy — Sun, 02 Dec 2007 16:08:46 -0600

In Ralph Moss'sÂ 12/02/07 column, Moss discusses a recent Vitamin D study that showed thatÂ high serum levels of vitamin D could protect participants from gettingÂ colon cancer, but not other cancers. It's unclear from Moss's article if MM was one of the other cancers followedÂ in the study.

http://www.cancerdecisions.com:80/120207.html

In spite of the disappointing results of this study regarding other cancers, I plan to continue taking Vitamin D dailyÂ to strengthen myÂ bones and to avoid colon cancer,Â too. I welcome comments from Vitamin D users - or from anyone who has anything to add.

revlimid

demerson — Tue, 27 Nov 2007 19:49:36 -0600

I think that these studies indicate benefits of revlimid however a couple questions occured to me after reading the article linked below-

-the article states that revlimid therapy does not cause the side effects that conventional chemo does- ("REVLIMIDÂ® (lenalidomide) from Celgene, an oral medication which treats without the ravages of chemotherapy") have any members on the list taken revlimid? If so, have you experienced any side effects?

- do these studies indicate that revlimid therapy as front line therapy is more effctive than a stem cell transplant? Do these studies mean that transplants should be the absolute last resort?

Newswise â€” Researchers from the Abramson Cancer Center of the University of Pennsylvania announced today that findings from two large, international clinical trials show unprecedented survival for patients with multiple myeloma,

http://www.newswise.com/a...

Celiac disease and mm connection?

demerson — Sun, 04 Nov 2007 19:51:12 -0600

This is a post to a site called Cancer Compass- the poster discusses the possibility of a relationship between celiac disease (allergy to gluten) and myeloma.

Do any mmers have celiac disease?

"We recently discovered that my wife, who has myeloma, also has celiac disease (gluten intolerance) which leads to damage of the lining of the small intestine if gluten is eaten. This results is malabsorption of nutrients and vitamins. The interesting piece of information is that celiac disease is the result of IGA and IGG antibody responses to gluten. Could celiac disease, in some people, lead to an uncontrollable production of IGA and/or IGG immunoglobulins resulting or contributing to myeloma? Could controlling celiac disease help treat myeloma? I do know - especially in North America - that celiac disease is far under diagnosed and that thousands unknowingly have the disease.

Anyway ... these are my questions, so if anyone has any further knowledge or ideas on this subject please post.

Regards,

Craig"

Appendix appears to help with digestion by housing good bacteria in the gut

Cathy — Sun, 14 Oct 2007 12:59:59 -0500

http://www.dukehealth.org/HealthLibrary/News/10151?from=RSS

A New View of Medicine-German new medicine

demerson — Sun, 09 Sep 2007 10:43:33 -0500

Many survivors are interested in the possible causes of their mm. While this article is out there, it does seems to offer some interesting info-

I went through a period of extreme stress myself leading up to my diagnosis. Did any anyone else experience stress leading up to their dx?

"He found that, like himself, every one of his patients had gone through a very stressful episode prior to developing cancer, and, upon investigating other diseases found that every disease is controlled from its own specific area in the brain and linked to a very particular, identifiable, â€œconflict shock.â€

http://articles.mercola.c...

Joe Record

Margaret — Sun, 02 Sep 2007 13:01:30 -0500

Dear Friends, I just read a post on the Acor listserv about Joe Record, who is in critical condition after suffering a heart attack two weeks ago (see below message). I asked permission to post this message on the MMA listserv and here.
My thoughts and best wishes for a speedy recovery are with him and his family.
Margaret
Florence, Italy

P.S. I am very behind on my listserv reading. I will try to catch up!

-----Messaggio originale-----
Per conto di Sherry Shedenhelm
Inviato: domenica 2 settembre 2007 19.07
A: MYELOMA@LISTSERV.ACOR.ORG
Oggetto: [MM] News About Joe Record

Hi Everyone,
I received this email about Joe Record. Because Joe has always been so forthcoming with us about his physical health, I thought he would like you to see this.
I would think well wishes would speed up his recovery, we hope.
Sherry Shedenhelm
___________________________________________________________________
G'day everyone

some of you may know this already, but Joe was admitted to hospital two weeks ago with a cardiac arrest. He was unconscious in Fremantle Hospital ICU for about ten days but has gradually come around. First off just a bit of a blink with the eyes, then more and more facial and head movement. We went to see him yesterday and he was able to look around and respond to our voices, but he can't do much else at the moment. He's got his glasses on now so hopefully he will have a clearer view of what's going on around him.
His sister Clare is there looking after him and he's had lots of friends visit. Many of his friends have never met one another before, but they know of one another through Joe.
We didn't go to see him today as we were both a bit sniffly and he was sedated in preparation for an operation tomorrow. People who have even the slightest chance of being infectious should not visit while he is still in critical condition.
We will keep you informed as we find out more. You might also get more news from his mates Dave, Paul or from Clare.
If you've got any news or wishes for Joe, send them through and we can read them out to him. Best wishes from Geoff and Barb.
Geoff Jagoe & Barb de la Hunty
Mastery Multimedia Pty Ltd
Multimedia and web content production

The b-m.org listserv/forum and it's benefit to you-please read and give your feedback

demerson — Wed, 29 Aug 2007 14:27:17 -0500

A frequent mm acor poster mentioned to me the other day that she considered this site and listserv as "alternative." This got me to thinking about what benefit the site and list is to the members.

1) I don't and have never intended the site to be just "alternative." The sole purpose of beating-myeloma.org is to help people manage their mm through interactive health communication- whether this communication is alternative, conventional, complimentary, whatever.

2) The acor mm list covers conventional issues well. The MMA listserv is a mixture but mostly conventional issues.

3) The goal of beating-myeloma.org has always been to build on the benefits of both the acor mm and mma listservs by presenting more useful communication methods (links, audio, video, interactivity, patient studies, etc.)- do more and be more open-minded.

Please tell me what you all think- what you would like to see on this listserv.

Thank you.

David

Harvesting Stem Cells

Lisa — Sun, 05 Aug 2007 16:21:58 -0500

Sorry for creating a new topic but I couldn't figure out where to put this query. What is the optimal timing for harvesting stem cells? We have gotten contradictory advice from our oncologist. Should stem cells be harvested as soon as CR is obtained, especially if that is within 6 months of diagnosis? Is there value in waiting a few months to consolidate the CR (our onc says if my husband keesp on the thal/dex his bone marrow will only improve - but already he is at 1-2% plasma cells,and no M protein). He was diagnosed early March, so already we are five months post DX. Is there a concern about cell mutation with the passage of time? Already the bone marrow biopsy report mentions "mild changes, like mild hypocellularity and megaloblastoid NRBC changes" which "may be due to dilution effects and/or chemotherapy induced changes." Is that something to worry about? Since we are trying to arrange harvesting in the US, timing is a big deal: we have to travel, probably leave our kids behind, stay for a few weeks (Dana Farber told me the harvesting procedure takes a month!) Any input about optimal timing for harvest is gratefully accepted. Thanks.

Dana Farber diet recommendations for rebuilding blood cells

Margaret — Thu, 19 Jul 2007 00:34:21 -0500

Good morning to all from a soon-to-be-hot-day in Florence! I just found this question and answer (Ask the Nutritionist) thingie on the Dana-Farber website (http://www.dana-farber.or...) and wanted to hear what y'all thought of it. Does this make sense or...? (Not that I have taken Revlimid or anything else conventional, but I wouldn't mind giving a boost to my blood cells, for sure!). Thanks, Margaret
Q: I have active but stable multiple myeloma and am on temporary "vacation" from Revlimid until my white cells recover. I'm currently taking prescribed doses of potassium (10mg daily), Vitamin D (8000 units once weekly) and magnesium (240 mg daily). What do you recommend I add to a healthy diet to boost red and white counts being depleted by Revlimid?
JSH
North Truro, Mass.

A: It sounds like you are on your way to helping replenish nutrients that have been reduced during the course of your treatment. It is also important to get enough protein to help rebuild blood cells. Good sources of protein include lean meat and poultry, fish, eggs, low-fat dairy products like milk and yogurt, soy foods, nuts, nut butters, beans, and hummus. To find out your exact protein needs, please speak with a registered dietitian.
Balancing activity with good quality sleep and rest can help rebuild red and white blood cells as well as overall immunity.
Research suggests that acupuncture may help with white blood cell count recovery between chemotherapy treatments. The Zakim Center for Integrative Therapies at Dana-Farber provides acupuncture services.

Bioprene concern

demerson — Wed, 11 Jul 2007 11:21:30 -0500

Shirley writes:

"Yesterday I bought two bottles of LifeExtension
> Super Curcumin with Bioperine. (800 mg. of curcumin and 5 mg. of Bioperine for
> each capsule.   Before that I was taking Doctor's Bsst, 500mg. of curcumin and
> 3 mg. of bioperine per capsule.   The Doctors Best had no warning but this
> bottle does. It says,"Do not take more than 15mg. of Bioperine per day. Do
> not use Bioperine without physician supervision as it may increase blood
> levels of prescription medicines. Do not take if you have a bilary tract
> obstruction."
>   Question: Is this something to be concerned about if we take the
> recommended 8 grams of curcumin per day?"

4. Curcumin and drugs (Finksolow)

tbmaz — Thu, 21 Jun 2007 20:55:48 -0500

Shirley,

I have been fighting myeloma IgG light chain for seven yers. I am not a doctor but I am a scientist. My goal has been and still is to control not cure the myeloma, since currently there is no cure and by chasing a cure you may actually lose the battle not to mention have a lower quality of life. I believe by setting a goal of an acceptable quality of life which means to me keeping pain to a minimum, staying out of the hospital (no pneumona, major infections), and being able to lead for the most part a normal life-working and enjoying my family, you will have the maximum quality and life spam.

These are large goals and myeloma is a complicated disease. As a scientist I believe you need to use every weapon at your disposal that proves useful to your myeloma, that certainly includes approved myeloma drugs as well as things like curcumin. The key to this statement is proves useful to you in controlling your M-spike. Everything I have tried I have tried to do in a scientific manor. I never added more that one drug or herbal at a time. I try to start at the lowest dose and increase until it started to work or the toxicity was too great, or I reached the maximum dose.

What have I learned? Curcumin up to 2 grams/day by itself does nothing; however, as little as 500 mg curcumin (without bioprene) in combination with 150 mg thalidomide is very effective in as little as two weeks. The thalidomide alone, at this same dose 150 mg, had stopped working before I added the curcumin. After adding 500 mg curcumin, each additional month I added an additional 500 mg curcumin until I reached 2 grams of curcumin with the 150 mg thalidomide and saw no additional rate of change of my M-spike over the original 500mg curcumin plus the 150 mg thalidomide, which is where I returned. I took the thalidomide at 10 PM at night and by 7:00 am the next morning I was wide awake. I took the curcumin with my lunch. Good things about thalidomide; I got the best night sleep every night! Which if you want to fight depression and lead the most normal life possible is very important. Suggest starting at 50 mg thalidomide the first night and increase 50 mg every night until your target dose is reached. I found it much easier to adjust to thalidomide this way, give it a week or two. After three years on thalidomide I do have moderate neurapathy, probably permanent, but for me that was a fair trade for three high quality years.

I started on Revlimid when after three years the thalidomide-curcumin combination stopped working and my M-spike started to go up over seven months. I started at 15 mg Revlimid for 30 days, to 20 mg for 30 days, to 25 mg for 30 days, all without dexamethasone. There was no improvement in my M-spike numbers nor my rate of change with Revlimid alone. The next month I added 500 mg curcumin to the 25 mg Revlimid. My M-spike that month stopped increasing and stayed exactly the same value for the next four months. However, my M-spike did not go down like the thalidomide-curcumin combination. Increasing curcumin over 500 mg to2 grams made no improvement over the 500 mg.

There are many new therapies in clinical trials today that if nothing else can provide great hope to extend life until hopefully some day a cure can be found. When everything stops working for me that is currently approved I will not hesitate to sign up for a clinical of my choice.

I hope my experiences helps someone. Just like all of you, I want to not only help myself but anyone suffering or confused from this terrible disease. Hang in there- when I started seven years ago, the average life span with myeloma I was told was 3-5 years.
Terry

Ignoring the Advice of Oncologists.

Alex Maas — Wed, 13 Jun 2007 08:32:22 -0500

I had a long talk with one of the 2 co-founders of my local myeloma support group. 9 years ago, he went to the oncologist who is a partner with the one I have. This particular doctor is still having mm patients do 40 mg of dex 4 days on, 4 days, off. There is no reason to do this much. At any rate, he advised this cofounder to have a stem cell transplant. He found another doctorâ€”who told him exactly the same thing. Then he met the other cofounder of the group, who told him a SCT did nothing for him. So he ignored their advice, and they founded our support group in San Diego. He had a dendritic cell vaccine, which is no longer available because it was extremely expensive and very costly. Nothing besides that and Aredia for 9 years. Now, finally he has to do something else. He told me, he would probably be in worse shape if he had followed the advice of his doctors. What was unsaid is he might actually be dead.So much for listening to any oncologistâ€™s advice. He told me he recently brought this up to this 2nd oncologist, and the oncologist told him "WE made the right decision". Of course.

david's email address

mjt8 — Wed, 06 Jun 2007 08:12:04 -0500

David, I tried to email to the address you posted today but it says that the address is invalid. I would like to be part of your study. My email is mjt8@mjosolutions.com. If you still need me to email you please forward me the correct address. Thanks. Mary Jo

Blood test results

Lisa — Mon, 04 Jun 2007 04:09:33 -0500

We got my husband's test results today when he went in for Zometa (unfortunately I was not with my husband so could not ask the doctor questions, and my husband didn't even look at the test results till he came home). They did electrophoresis as well as another CBC (which they had just done four days earlier). HIs hemoglobin had gone up from 13.1 to 13.3 in four days. THe immunology report shows that his IgA is down from 1.1 to 384.5, which is within the normal range. They also tested for IgG and IgM which surprised me; we were not told they were watching IgG (his MM type is IgA Lambda). And, I don't know what IgM is; his value is low, which I also don't understand (the ref values are 89-280 and his is 36.7) His Beta@ microglobulin is 1.53 (the ref values are 0.7-3.4) so that is now normal, but we never were given an original Beta 2 Microglobulin number in mg/l; only a percentage, so I don't have anything to compare that to. But, the electrophoresis test result confuses me, because there it shows his Beta value to be 18.4 percent, which is high, and his Gamma value to be 5.5 percent, which is low. But his original percentages were Beta 26.4 and Gamma 3.4, so both have improved. His total serum protein is 6.2 g/dL (ref ragne is 6.3-8.5). I am having some trouble being able to understand all of these values and hope that the newly diagnosed packet, if/when I get it, will help me out. The doctor apparently said his examination of the blood under the microcope showed normal-shaped cells. I am assuming all of this is basically good news but I wish I could understand the confusion about the Beta numbers.

Kicked off the acor list

Alex Maas — Tue, 29 May 2007 10:26:41 -0500

I was "suspended" by the list owner of the acor list, so I asked to be permanently removed. I thought I would get more emails of support, but I have only had a few. He took great offense about my postings of Botivia. I was not trying to get anyone to sent the man their credit card numbers. I have never had any other nutraceutical company offer a discount to me a a cancer patient. Drug companies like Celgene seem to charge whatever they feel they can get away with. And the man who runs the company truly impressed me with both his knowledge and his graciousness. And he never made a single claim, yet he would like to put his products in testing. Also, I was unsure how to address him, because I did not know if he had a PhD, but he told me that Dr. should be reserved for medical doctors in his opinions. I am not sure, but I think he may have a PhD. There has been a distribution problem with his products, but I think he can work this out. And, geez, he gets them made in Singapore. Does not the list owner realize that pharmaeceutical companies get most of their drugs made or at least a lot of them in foreign countries? Also, I have to tell you Mike Katz. the list owner, was particularly offended because in a direct email to him I questioned the results of any web survey. He was co-author of a study about Zometa in the NEJM, which he was proud of. But he did not like to be questioned. James Betz, on the other hand, would like to have a web study of his products, and he fully realizes it would not be acceptable in medical journals. He will also be putting his products in clinicla testing, and this may include against a myeloma cell line, at least in the test tube.

Really I do not have the time to fight Lon Nessler who wants to send me constant emails telling me how logical Lon is and how illogical Dr. Berenson's views are on transplants. Lon just had a transplat.

And I do not have time to battle Larry Edelstein, who I do consider a friend about the NTx or CTX tests or about the merits of vitamin D.

And although I respect Brad Rathkopf very much and have a deep regard for the man, he is waiting for a drug that is never going to be available. I do believe in 20 years we might have something, and in the next 10 years things that help to prevent the mm from coming back and also some type of drugs from the cancer-immune system research.

We have better things available to us now, I think, with some of the things David knows about, psychoneuroimmunology that Arnold Mass posted about (please get him to be a member of this group), vitamin D, resveratrol, curcumin, maybe artemisinin, and I do not know what else.

But most patients want to be given a pill. That is not going to happen for us.

I truly believe that with your help, and with the help I can offer you, we may all live a very long time with this disease, even if we cannot get any type of remission. It may not be true for everyone, but I think it is true for a lot of us.

The acor list was taking far too much of my time. I did not mind posting, but I have no interest in battling anyone anymore.

Alex Maas

Various Topics

Alex Maas — Thu, 24 May 2007 05:17:48 -0500

I hate to be a naysayer, as actually I try to be open-minded.

I do have to tell you that the late and beloved cofounder of our local mm support group, who lived with myeloma for at least 10 years, went to the Max Gerson clinic in Tijurana. Of the other people that were there with him, he way outlived the rest. He could not tolerate the regimen, and left there after a few months. He had a fondness for hamburgers apparently, and a real dislike for coffee enemas. The latter can actually can be quite dangerous. This is not from Quackwatch or some place that has negative things to say about all alternative therapies, but from other sources. I have had this confirmed by several doctors.

About megadoses of vitamin C. Vitamin C in its normal water-soluble form does nothing against cancer in megadoses. After 1000 mg per day or even less, it will only pass out of your body. You could get vitamin C by infusions or use the oil-soluble form of bitamin C, ascorbyl palmitate. Either of these ways would produced the desired effect. I do not know if it would do anything or not. I have not done this myself because I may be using Velcade again, and vitamin C and Velcade are antagonistic. Velcade for me was relatively tolerable so I would hade to reduce how well it works.

Megadoses of Vitamin D on the other hand might actually do what Linus Pauling had in mind. If you search for Vitamin D Council you will find lots of good information from their site. It is not toxic at the levels that are repeated over and over from official sources. Toxicity starts at 40,0000 Iu per day.
MOre official source say toxicity starts at 10,000 IU per day, but this information is in error. Also, an M.D. who used vitamin D for another reason found that dry vitamin D did absolutely nothing to raise the level of vitamin D in his patients. You must take the oil-soluble form, which is an a gel.
I guess dry means it is not in an oil-based capsule. But the dry kind is worthless.

Also, resveratrol and vitamin D work together.

Finally, someone has turned me on to a much better source of resveratrol thatn Longevinex. They are only beginning to export their products to this country.
The one they are selling now I am not quite sure about, but it seems to be more powerful and much, much cheaper. There is another product they will be coming out with soon called TransMax. I have no doubt about this product.
There is none of the hype as with Longevinex, and if you look at their site, I think you will see they have a far superior product.The site is
http://www.bioflu.com/

I hope thiw was helpful. You are free to debate what I have written here.
I have no problem with this as I do with my acor list posts. I would not post some this on that list anyway.

Alex Maas
San Diego

Curcumin, resveratrol, and artemisinin

Alex Maas — Sun, 20 May 2007 09:53:43 -0500

Unfortunately, I do not think that despite takint 8 to 12 grams of curcumin per day and 3 grams of resveratrol a day, preceded by 15 minutes with 1500 mg of quercetin, it is having any anti-mm effect.

I have run out of artemisinin, unfortunately, and although I ordered it a very long time ago from MyVitaNet.com, I never received it. I called them, and they were not even apologetic and had no explanation. They just sent me some more.
The place where I got artemether, (hepalin.com) its stronger form, was much more gracious when they billed and sent me two bottles when I had ordered only one. I will be doing this again.

I can tell by the way I feel I am becoming increasily anemic. I will be getting my test results next week. I feel this is really unfortunate.

I can tell you that curcumin has had two effects. I have had life-long acne and still have suffered inflammation pretty constantly. This is completely gone. So there is no question the curcumin is anti-inflammatory.

It also gives me terrible diarrhea, but compared to the effects of other drugs, I feel that is okay.

I may add some other things if I am not too anemic.

I am going to ask for some Zometa and perhaps biaxin, as I believe the latter actually makses resveratol more potent.

Finally, I need to research more about the effects of megadoses of vitamin D, as I know I read about is relationship with resveratrol. I am unsure of its toxicity at high levels.

I have also written to the main researcher at the University of Washington about the toxicities of artemisinin at high levels and its contraindications with resveratrol and curcumin.

I have a theory as to why it does not work for us--we just have too many iron-hungry cancer cells. This is why those who have hemachromatosis (too much iron) watch their iron levesl drop to normal when they get mm. Also,
I think that compared to say, prostate cancer, we just have a greater number of malignant cells, maybe by a factor of 10,000 or so. I have not been able to find this out.

Finally, I am going to try to get a manufacturing lab to make compound of artemisinin with iron--this is basically what the University of Washington is doing to get it more effectively into the malignant cells. I have absolutely no idea if this could be done or not, but if it can be, and if it can be made in a non-toxic way, then we will have something available to us years ahead of when it will be available commercially.

Alex Maas

Issues-FDA, dshea, supplementation

demerson — Thu, 03 May 2007 10:53:29 -0500

all- The FDA's possible regulation of supplements has been discussed on this listserv before and I came across this info and thought the lists might want to read it-

FDA Legislation Update- Many are concerned that this foundation is a backdoor way of attacking DSHEA.

To read more on this topic go to-

http://v.mercola.com/blog...

David

Figuring out what works through our own efforts

dcm — Sun, 22 Apr 2007 15:36:38 -0500

Hi all,

This is my first post in this forum. I couldn't get back to the thread David and Margaret have startedabout how to use a list-sponsored exercise to assess the effectiveness of various complementary therapies.

Margaret raises valid concerns that no one will listen to whatever finding we may come up with, as well as how to standardize our findings so that they actually compare like treatments to like treatments.

I have two comments.

First, so many great discoveries have been learned anecdotally or empirically -- by observing effects outside clinical trials -- that it's not right for the establishment to ignore signals from such events.

Think Pasteur.

Think of the use of thalidomide in MM. Widespread before any clinical trials and way before FDA approval.

Think Biaxin use in MM protocols. Dr. Morton Coleman noticed that some mm patients who were on biaxin for other reasons did better on their dex-related protocols than others with no biaxin. He was highly disregarded for years, almost a joke. Clinical trials followed. It does work for many people. It is thought to potentiate the dex, but I'm glad they didn't wait to figure that out.

Think about MD-myelomics on various MM listservs who are making themselves experiments of one using cyclopamine, circumin, resverstrol. As far as I know, to good effect, or at least with stable disease, but wouldn't it be nice if we could keep track?!

After a while, the mainstream takes note. For years I couldn't get them to do a free-lite test at Dana Farber. When my husband switched to Dr. Richardson, he did one right away without any request by me. The original oncologist was shocked. Now Dr. R is in charge of the MM clinic at DFCI. He's forward thinking but even he is skeptical of the MM cancer stem cell that Dr. Matsui at Johns Hopkins believes he has identified.

My second comment: Even if keeping track as David has offered to provide a mechanism to do is all this group did, it could help both members of this list and others who don't know the list exists. Perhaps individual doctors will pay attention. (One patient was able to talk his doc in IOWA into giving him biaxin four years before DFCI would consider it because of postings on the acor listserv.) Perhaps word will spread through the internet.

My takeaway: It makes sense to keep a record even if you can't standardize dosing, other variables, etc. It's worth trying to set up a spreadsheet type report where those things could be noted (other supplements, combinations, alternative treatments....)

Having said all this, I note that my family won't be contributing meaningfully to any such exercise. My husband won't even put all the pills recommended for his treatment into him. Right now, that means he's not on the Dana Farber peripheral neuropathy regime and it shows. But there are only so many pills he will put down his gorge and I'm so glad he's here to put any.

But I do think it would be a very worthwhile exercise that might make this the most useful mm listserv.

Good luck,

Deirdre

EGCG

Margaret — Thu, 05 Apr 2007 10:23:20 -0500

I just did some research on EGCG (in fact, I just posted this info on my blog) and MM cells, EGCG being the green tea extract, by the way. Well, anyway, a 1998 study was done on the synergistic activity of curcumin and EGCG on prostate cancer cells, and the findings suggest that they should be used together because they have different mechanisms of action. Together, they inhibited tumor growth.
This brings me to the point. Is anybody taking EGCG, and if so, with what results? Thank you!
Margaret

How Drs deliver Diagnosis

portlandrose — Tue, 03 Apr 2007 19:34:38 -0500

My Dr announced after my bone marrow test that I "didn't have Cancer" He neglected to tell me I had MGUS which I already looked up on the internet, related to the myaclonal gammopathy found in my blood. Even my internist wasn't sure she should give me info on MGUS and treat it like it's nothing to bee concerned about. So when I had other problems and went to my old Internist he refused to see me because I should go to the Oncologist but I stated my oncologist told me "I didn't have Cancer" but he would not see me. I called the Oncologist, who was mad and called the Internist and chewed him out, so in a passive agressive way the internist's secretary called me back to give me an appointment in a week (I had gone in for severe pain in my groin) I concluded this Dr has a problem with Cancer so I changed Drs and she is the one, who was not sure she should give me info about MGUS- the Oncologist is waiting 3 months to see if my #'s go up I assume. During the whole process the Neurologist (I had neuropathy in my legs) saw me the next day after I was referred (usually takes at least 2 weeks) for 2 hours, never said much, ordered tests that I will get to discuss next week (I saw him 4 weeks ago) but I think because MM is rare and they have little exposure to it they all, the Oncologist included are scared of Cancer and giving bad news. They never smiled once, no matter how hard I tried to get them to smile or laugh. I think my new internal specialist is Ok, she gave me MGUS info, although you would think from the way she explains it that this seldom goes to MM. I figure I should do what I can to reduce stress and eat healthy. I feel I have a choice after talking to Margaret and David and I have found another in the Portland, Oregon area that had endrometrial cancer and when they wanted to see her for chemo after the hysterectomy, she simply didn't go and is going Vegan. But it's a lot to process and I just got a book by a DR who was a patient and saw a need for a book cxalled, "How Doctors Think" by Jerome Groopman, M.D. - I'm hoping that after reading this I can talk to these folks and meet them where they are because they certainly aren't where I am.

Toxicity of Quadramet, Velcade, and Dr Berenson

Alex Maas — Tue, 03 Apr 2007 10:28:21 -0500

I see Dr. James Berenson in Los Angeles from time to timeas my myeloma specialist. I like him because he is very concernedabout toxicities. When the head of the bone marrow transplant unit wanted to give me Velcade as induction therapy, Dr. Berenson told meat that time he felt it was far too toxic for my level of disease. Thiswas despite his being paid by Millennium Pharmaceuticals at the time togive lectures about mm treatments and Velcade. Since then, he has toldme he has learned to use it, as he uses it at lower doses and combines it with other drugs. I still think it is toxic, and I was going to refuse to use it for maintenance therapy if I got into remission, as he promised. Oh well. It never happened.

Also, he does not like Revlimid, as he referredto it as a "nasty drug". I see so many people like it, yet he does not because he feels it is hard on the bone marrow and has a lot of side effectsthat thalidomide does not. I find this interesting, as certainly other mm specialists see it differently.

One thing he had suggested to me, as the trial is expanding, is Velcade and Quadramet. He told me the advantage is that the patient only has to take Velcade very occasionally, although now I cannot remember how often. Yet I looked up Quadramet, and I was very surprised, as I immediately thought this is a drug I really do not want to take. I am sort of surprised that Dr. Berenson thinks it is good, but I guess he feels the Quadramet is less toxic than Velcade. He would know way more about than I do, and like I said, he really does consider toxicities of treatment. (He does not consider costs to the patient, which I do not think is very good. Also, he is not always right, so I am certainly not trumpeting that he is the best mm specialist in the world.)

I just thought I would like to post about this here.

Alex Maas

Nutrition

portlandrose — Mon, 02 Apr 2007 10:49:11 -0500

A place to discuss supplements and diet as a useful therapy- and post recipes that are palatable and exciting!

Does anyone know about using Yoga as a sort of mental therapy?

myeloma — Sat, 24 Mar 2007 07:42:14 -0500

I'm just wondering how many patients might try Yoga as a therapy. This website says a lot towards mind over matter - that staying mentally healthy helps keep the body healthy. In short, that an ill person who gives up hope and lets their illness get to them makes themselves that much more sick.

Yoga exercises and relaxes both the mind and the body. Some of the Yoga exercises can be very physically exhausting, but there are a number of techniques that don't require much physical strength, but are designed to help relax your mind and clear your thoughts and put your mind at ease.

There have been similar studies in pediatric oncology where doctors have children draw pictures, with crayons and colored pencils, of cartoonish characters - one character being the cancer, the other character being the child. And the characters basically fight one another and the child beats, or over powers the cancer.

Does anyone know much about using Yoga to help relax a patient's mind?

how to join this listserv and make a post

demerson — Wed, 21 Mar 2007 10:26:45 -0500

This listserv was launched the week of 3/12/07. I am learning how to use it myself. I went to beating-myeloma.org, clicked on forum/listserv, signed up as a member then clicked on the "submit a forum topic."

I encourage anyone reading this to join and contribute. Thanks

David Emerson

causes of myeloma

demerson — Tue, 25 Jul 2006 10:47:27 -0500

All I can ever read about the possible causes of mm is general environmental factors. Are there any other possible theories about possible causes of mm?

supplements during chemotherapy

demerson — Mon, 10 Jul 2006 15:03:48 -0500

Does anyone have experience with taking any sort of supplementation during chemo or radiation? Did it help or hurt?