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.
Interactive Health Communication for longer, better lives.
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lisa you need to ask for the paraprotein or M-spike.
this is the abnormal band of protein shown in electrophoresis.
sometimes there are two bands....band one and band two & they are added together for
the total.....mine is 27 g/L at the moment. (different units in australia to usa)
there should not be any paraprotein at all,so the lower the better.....april '06 mine was 5
and at dx in sept '04 it was 28 g/L
with the Ig's they should do 3 of them IgA,IgG and IgM.
one of them is well over the top....this is the clone that has gone haywire.
the other two are usually suppressed because of the disease.
hope this helps as you find out more - joe
Thanks Joe, this is helpful. The IgA paraprotein band accounts for 6.5% (0.4 g/dL) of total serum protein. At diagnosis the paraprotein accounted for 17% (1.1 g/dL) of total serum protein, so this seems like a good reduction, although it is still there. So, this figure (the paraprotein) is the M spike? No one has explained any of these terms to us and I'm a literature person, not a scientist, so I'm having to work overtime to figure stuff out and keep these things in my head! It's an education, but not one i had in mind getting at this point in my life.
you don't need to be mucking about with percentages (for your own clarity)
that score of 1.1 g/dL is the key value (this is 11 g/L in our units i think)
tracking the paraprotein & the abberrant Ig that has taken off measures how you are doing.
this is when the disease can be tracked like this from the blood serum.
other people sometimes don't secrete into the serum and they have to use other tests
to track the free light chains in the urine - i have not got a good take on this,but alex
has to have these tests and they are weird results in his case anyway.
however for us the serum paraprotein is very useful.
so,the protein in the blood is mostly albumin (range 35-50 g/L oz units but you get an idea),the actual protein in the blood is 63-83 g/L range......and i had 83,but this has been as high as 105 dec '05.
they give alpha 1 and alpha 2 and beta (these are normal values)
then gamma (8-17 range) 30 g/L ,and globulin (20-40) 47 g/L
then the two bands band 1 = 25 g/L and band 2 = 2 g/L......totals 27 g/L
the note says 'there are two paraprotein bands in the gamma region.the bands have been previously identified as IgA lambda paraprotein"
bottom line: just grab that m'spike or paraprotein score.
i think i have got this right.....unless anyone contrdicts this with better info.
you also need to track bence jones in a urine test.
cheers - joe
Beta-2 microglobulin is used as a prognostic factor (together with albumin), and reflects tumor burden, see the MMRF website: http://www.multiplemyelom... . So your husband's value is very good. Keep it down! From Answer dot com (see: http://www.answers.com/to...): "Beta globulins are a group of globular proteins in plasma that are more mobile in alkaline or electricaly charged solutions than gamma globulins, but less mobile than alpha globulins. Examples of beta globulins include: beta-2 microglobulin, plasminogen, angiostatins..." Beta globulins are measured in the SPEP (serum electrophoresis) test, together with albumin, alphas, etc. My Beta-globulin (SPEP) test is a percentage, too, by the way. So, it's a different test from the Beta-2 one, see http://www.answers.com/to... . Sounds as though this may be the first time they have checked your husband's Beta-2 M, if you have nothing to compare it to. I am very happy to see that your husband's hemoglobin is higher than mine (which is normal). Excellent. As for monitoring the other Igs (IgG, IgM and IgA are all immunoglobulins), that goes with the territory, since our MM cells tend to crowd out the other immunoglobulins. So too many IgGs will start squeezing the IgMs and IgAs into a corner, and so on. Thus, it's normal (unfortunately!) for us MMers to be immuno-suppressed. I am IgG kappa, for instance, and my IgM and IgA are hanging in there, but are very very low. That's it, hope this doesn't add to the confusion! From a non-medical brain, Margaret
Call the DR. and have him call you if you can't attend an appointment- otherwise he's getting paid for nothing.
Portlandrose, you're so right about that. He IS getting paid for nothing. Our doc tacks on a consultant fee if he happened to pop in when my husband does zometa to say hello, and maybe check the whites of his eyes.It's a steep fee for a five minute interaction. And last week he charged us for a letter he wrote to the surgeon reporting on my husband's condition, even though we didn't ask him to write the letter! We are going to talk about fees at next visit. We feel like he's exploiting the fact we have insurance - but, it is not yet clear whether insurance is actually going to cover all of this!
I found this very intersesting scholarly article that I think you should all read. Click on the PDF file. I was amazed.
http://www.jstage.jst.go....
Notice it's Japanese- I believe with the Big Pharma cartel here and a system that rewards them -that any movement toward validating herbal/dietary causes of cancer will only come from a country with socialized medicine. By the way Michael Moore's "Sicko" starts this week, YEA!
Alex-
I had a little trouble navigating the site and was only able to read the abstract. My impression from the abstract was that someone (who?) is studying administering phytonutrients, antioxidants, etc. to people for their chemopreventive effect. Is this true? What else does the article say? Who authored the article? More info please.
David
No longer do I assume Dr's have my best interests at heart- some want an easy fix and for my MGUS symptoms that's not happening- be glad he's talking to other DRs though- many drs refuse to admit they "don't know" and refer on to another DR. I just read " How Doctors Think" by Jerome Groopman, M.D. and found it useful for communicating with my DRs, but I'm sure I'm only getting through 1/2 the time.You must realize you are responsible for your health and these are just mechanics with tools- "The right tool for the right job" is the saying but a lot of their tools damage and have side effects. At $480 a month for insurance I make sure I get my moneys worth by asking all the questions I want or need and asking a lot of why aren't we doing this or that. Good luck- it shouldn't be a job but as we all have learned it is.
"You must realize you are responsible for your health and these are just mechanics with tools"
Yes. If we hadn't stood our ground on Sunday, for instance, my husband would have had a third surgery and been kept in hospital for IV antibiotics over a few days. Because we asked them if it was REALLY necessary, and expressed reservations about another surgery, they discovered that really they only needed to lance the abscess that had developed, administer an IV and let him go home after a few hours. He's doing just fine, and much happier at home. And today I found out our insurance no longer honors bills from this hospital! So, if we'd done the surgery and hospital stay we'd be looking at a pretty big bill right now. (I don't know how we're going to handle future problems related to the spine, since our surgeon, whom we like, is at this hospital).
I wanted to share this with you all. I hope I'm reading this right, but I just picked up my husband's electrophoresis test results and the Mspike is GONE! At least, that is what
I understand it to mean. THe comments
at the bottom of the page say "No monoclonal bands seen." Everything is within normal range except
the gamma value, which is too low.
Total protein is 6.7 g/dL (ref range is 6.3-8.5).
Albumin is 4.6 g/dL (ref rangeis 4.2-5.3)
Globulin is 2.1 g/dL (ref range is 1.3-3)
A/G ratio is 2.2 (ref range is 1.0-2.2)
alpha1 is 2.8 % (ref range is 1.6-5.8)
alpha2 is 8.0% (ref range is 5.9-11)
Beta is 13.3 % (ref range is 7.9-14)
Gamma is 7.5% (ref range is 11-18)
I hope I"m right in wanting to celebrate! (the sheet still has that graph with the spike on it,
which is a little confusing).
If I'm reading
this report right, it's a complete response in just under 4 months. (Of course there is still the BMB to take into account, which he hasn't done again since diagnosis.)
I know full well that the Thal/Dex alone could be responsible for these good numbers.
I'm not claiming anything definitive for the alternative things we've been doing.
But, we are sure going to keep on doing them.
What usually happens when the Mspike disappears? Do people stay on the meds?
Lower the dosages? Try to go off altogether? I think we will be lobbying for a reduction
in dosage, first thing, and then try to go off altogether, with careful monitoring, while
keeping up the alternative stuff.
I think we will feel comfortable in standing firm on our rejection of our onc's announcement that he was going to increase my husband's Dex dose to three blocks this month. He'd have to come up with a VERY convincing argument to get us to accept that increase now!
Yes, there are what they call CR, complete remission. It's like winning the lottery, a very small % (10%) of MM patients. In MM it means that you are likely to respond and stay longer stable with less drugs. You probably need more data, BMB, and maybe watch it another 60 days before deciding where to go from here. But definitely celebrate.
I would demand another BMB now if that is what it is by Drs standards and I wouldn't take no for an answer- You go girl!!! Congrats!!!
Remember that MM is a patchy disease and BMBs don't always give you an accurate accounting of the disease. We found that one BMB can show little to no plasma cells and another taken 10 days later can be full of plasma cells.
Lisa-
I agree with everyone- celebrate, you go girl, but try to measure further as per Diane. I have standardized on the Free Light Chain Assay- FLC test- from an english co The Binding Site- http://www.freelite.co.uk...
Very sensitive test-congrats-
David
Thank you so much for all the support! This forum is great; I'd be lost without it. About BMBs, my husband is not too keen on another BMB too quickly, he doesn't want to do it too early and have to repeat more often than necessary. But, we need to get as much data as possible to move on harvesting stem cells. David, about the Freelite guidelines, the link didn't take me to a working page. Our onc. told us, last time we asked about the Freelite test, that it isn't relevant for my husband because he is not a light chain type. Is that accurate to say that the test isn't helpful for those whose MM is not light chain? My husband does not secrete in the urine at all, at least not at this point. About winning the lottery, actually my husband and I were talking about that analogy. We do feel incredibly lucky. But, given the labor of all the other stuff we're doing, Gerson, etc, - (which may or may not have helped, but we think it probably did )- we were remembering that old joke about the guy who prays and prays to win the lottery - finally God gets exasperated and tells him, My son, ok,I'll help you out, but meet me half way - buy a ticket! If we did in fact win the lottery, not only did we buy a ticket, but, it feels like we also cut down the tree and milled it ourselves to make the paper on which the ticket was printed! :-)
Lisa,
Never stop milling the tree. The empowerment of being involved, is worth all the blisters.
Terry
Thanks, Terry. Yes, there are a lot of blisters, but that empowerment might be the most important thing of all. Maybe in part it's a placebo effect, who knows? But placebos can work too. And, speaking from the perspective of the caretaker, a little empowerment is better than valium. :-)
Yesterday we went to see a doctor at the oncology center (government run). She is British, has only been here about a year. She was was approachable and fairly easy to talk to, and answered a number of questions we had (including little ones like, what does that graph on the electrophoresis report mean). However, talking to her made me feel better about our own doctor, who is extremely hard to deal with but who seems to be better informed. But perhaps part of that is a reflection of differences between UK and US medical systems (our onc is US trained and this doctor has just come from the UK). What struck me about the conversation was the extent to which all doctors have a protocol that they just plug the patient into - or at least that is what it seems like. The UK front line protocol, she said, is the VAD protocol - so if we'd gone to her she wouldn't have put my husband on Thal/Dex up front.So how one gets treated really has a lot to do with what kind of training the person has had, what country they were educated in, etc. There didn't seem much space for individualizing treatment plans. We told her about the alternative things we've been doing and she didn't really react, either negatively or positively. She did say that most doctors are trained in evidence-based medicine so they'll dismiss things that can't be proven as a load of rubbish. She said that in the UK patients are discouraged from using vitamins in case they help the tumor (guess she hasn't been reading the latest reports). She also had no idea at all about the latest findings about low dose Dex. She seemed actually less up to date than our onc, who at least knows that vitamins are ok. As far as my husband's case is concerned, she said that having the M protein disappear entirely was unlikely, and she wanted to rerun the electrophoresis test on a highly sensitive machine that the center has just gotten in. She clearly thought that the good results were just a lab error or poor equipment. We'll find out next week whether she's right or not. Also, my husband does a bone marrow biopsy tomorrow, so next week we'll find out just how good his apparently good response really is. Meanwhile, we still have not figured out a plan for harvesting stem cells; we are waiting on insurance issues. I was reassured to find out from yesterday's appointment that in my research I had already identified two of the three main MM doctors in the UK - it is nice to go to a medical appointment and already know most everything that is mentioned: at least I feel that we can assess information instead of just being blindly led by whatever one person tells us. I was a little dismayed by the stats she put out, though. She said that transplant and drugs alike only give about a year (of remission, I think she meant). I'm seeing a more hopeful picture coming out of things like the reports from the Cos MM workshop,so I hope she is just out of date. I did find out that here in Cyprus they only do a maximum of 15 auto transplants a year. So, we have to find a way to travel for harvesting and storing stem cells, since there is no way we would risk transplant here.
I've found the same thing here in the US. Everyone seems to have a different idea about what will work. My previous doctor mentioned Thal/Dex just once, but instead emphasized other treatments that involved clinical trials that he was directing. I would have been smart to get another opinion, but didn't have any symptoms, so didn't.
I wanted to mention to you, Lisa, and to everyone, what Dr. Durie told me last week about lab tests. (I'm consulting with Dr. Durie, director of the IMF, about treatments, labs, protocols, etc. to make sure I'm on the cutting edge of MM conservative treatments that work.)
For IGG MM, Dr. Durie recommends the following monthly tests: CBC; Chemistry Panel;Freelight test with K/L Ratio; IGG test; Serum Protein Electrophoresis (SPEP)test. The K/L Ratio is the important marker to watch for in the Freelight test. The IGG shows the amount of protein until IGG numbers drop below 2,000, after which proteins can't easily be detected by the lab. The SPEP test is a back-up test that will show the amount of protein in the blood, even if the IGG drops to near-normal levels. This will allow you to track the advance or decline of proteins. The British oncologist seems to be doing the right thing by ordering an SPEP test.
My current doctor wasn't including the IGG and the SPEP before I told her about the call to Dr. Durie, but she is doing so now. I'm grateful that she's open to suggestions from other doctors.
Dr. Durie appeared on a radio program, www.vitaloptions.org on 7/15/07.
Here are a few of his comments. Thalidomide, Dex., Velcade, Revlimid ad other novel therapies are producing better and more CRs than some transplants and should be considered first. (Transplants are still being done, however.) This answer was partially in response to someone who had chromosomal abnormalities and was considering a PBSCT or an ALLO transplant.
Dr. D. says that many doctors don't want to treat MM unless the patient in in pain (bone deterioration, etc.) Do an MRI first, then a PET/CT scan if the MRI doesn't provide a definitive answer as to the cause of pain. Save treatments for when you really need them.
In response to a question about research on cancer stem cells that reportedly seem to cause MM (Johns Hopkins studies), Dr. Durie said the Dr. Matsue (Matsui?)from Johns Hopkins is working on a clinical trial of Rituxan which may kill MM stem cells.
It's important to lower the drug dose of whatever is causing PN. Neurontin and L-glutamine can help, but lowering the drug dose is critically important.
Re: cord blood. There aren't enough stem cells in cord blood for adults, but there probably are for kids.
Re: PN. Both Velcade and Revlimid can cause PN. After Thal and PN, it may be best to try Revlimid.
I found that the radio program had a lot of interruptions with very little real time for Q & A. Dr. Durie and Susie Novis also mentioned the Myeloma Mobile, which is traveling across the US to promote awareness of MM. You can read about it on the IMF web site.
Cathy
Lisa-
Good luck next week-
"What struck me about the conversation was the extent to which all doctors have a protocol that they just plug the patient into - or at least that is what it seems like. The UK front line protocol, she said, is the VAD protocol - so if we'd gone to her she wouldn't have put my husband on Thal/Dex up front.So how one gets treated really has a lot to do with what kind of training the person has had, what country they were educated in, etc"
Has anyone on this list ever actually disagreed with their onc's recommendation and then asked for a different protocol? "no thank you, I don't want VAD, I would like thal/dex please?
David.
David,
This is no way to argue with the protocol except to go to another hospital with a different protocol. The protocol is a join decision by a special hospital transplant board. I was not going to get my transplant at the Mayo because their protocol included whole body radiation in 2000. Fortunately, by January 2001 mayo had dropped whole body radiation from their protocol. Certainly as one decides on a hospital for transplant, along with number of transplants/year, the protocol should be known and compared. The Cleveland Clinic had their own protocol with a different set of chomo drugs instead of 200 mg/kg melphalan. I eliminated them because I didn't like the odds, their combination or the rest of the world's melphalan.
Terry
Terry-
First of all, I wish that I had known a fraction of what you knew before your bmt-"the protocol is a joint decision..." I went with a bmt program that did more transplants than the cleve clinic- I wish that I hadn't done VAD protocol- but what's done is done.
Part of why I'm asking is for those who can't just go to a different hospital- Lisa especially- but read the article in today's listserv re uneven cancer care- is there anyone on the list who is thinking about bmt's the way that Terry is? I am impressed to say the least, Terry-
David
I second your comments, David. Terry, I like the way you think! Since we all have to figure out what to do next, you've raised the bar for all of us, and that is a good thing. Cathy
David,
Fortunately, Oncologists as a whole have learned a great deal about what works and what doesn't when it comes to transplants and also drug regimes. I had two scary oncologist when I started out. One wanted to put me in an allo transplant and when I shared with him the odds of 40% mortality he said what do you have to lose-this guy was the department head!!! The second oncologist yelled at me and my wife when I suggested the thalidomide-dex clinical at the Mayo vs VAD as pretreatment prior to transplant-didn't keep him either. In my opinion, when your oncologist is not up to the latest drug therapies/dosages and he or she won't listen even when you share the information, it is time to look for another oncologist. These drugs are quite toxic and you are balancing keeping the myeloma in check vs quality of life and even staying alive. You have to have an oncologist willing to stay abreast of the latest changes-and some of these changes are happening weekly! Revlimid is a good example. The clinical was done at 25 mg Revlimid and pulsed dexamethasone, 40 mg-4 days on, 3 days off. The problem is not that this combination/dosage doesn't hammer the myeloma-it does! The problem is this combination at this dosage is so toxic, no one can stay on it! The good news is the big centers such as the Mayo have abondoned it (recently) and are quite successfully using any where from 10-15 mg Revlimid with dexamethasone 10-20 mg/once per week. However, if you are seeing an oncologist who is just reading the holly grail clinical you are in deep trouble! My advice is this is your life and you have every right to demand that your oncologist get it right the first time.
Terry
Terry, every time I read a message like yours I find myself feeling more depressed. I agree with everything you say. And, judging from our latest appointment with our onc, I think we are in fact in trouble. But we have no decent alternatives. Every time we meet with the doc he says different things. At first he told us transplant had to happen within 2 years of diagnosis. Then he changed that to 18 months from diagnosis. Now he's changed it to 16 months from diagnosis. Last time we saw him he told us that if the numbers come down we should harvest stem cells -- he imparted somewhat of a sense of urgency, suggesting that the numbers could go bad again quickly and we should strike while the iron is hot. This time he said that even though my husband's bone marrow biopsy shows no evidence of multiple myeloma - no abnormal cells, max 1-2 percent plasma cells - that my husband should stay on the full dosages of thal and dex for a few more months to eliminate any residual disease before harvesting -- unless we plan to go imediately to transplant (which we don't; we want to get a second opinion, and to harvest and store stem cells, but not to move to transplant quite yet.) The onc is dismissive of our concerns about the drugs. We asked him about drug resistance and he said that Thal and Dex is not a toxic treatment, that resistance will not develop in a few months, and essentially that we should not be worrying about it. We were not able to even discuss lowering the dosages because we got off onto all sorts of tangents because the doc wasn't listening to what we were saying. I asked a question and he snapped at me that he had already explained this several times before but (due to my denseness, was the implication) he would have to explain it again. Only problem is, he hadn't listened to my question so his answer had nothing to do with what I had asked. Every time we bring in any new information the doctor dismisses it; he is focused, as you say, on the holy grail clinical. He wrote a comprehensive report on my husband, at our request, and he flat out fabricated some things (for instance, he said that he had fully discussed all options with us, explaining benefits and risks, and that we had opted for Thal dex over other choices. What a lie! He explained nothing, handed us a prescription, and when my husband asked for the weekend to at least do some reading and think about his options the doctor lectured him about how he was taking his life in his hands, and essentially forced him into starting immediately.) Last week, when my husband had his bone marrow biopsy and had a seizure afterward, I asked the doc worriedly if it was a heart episode, and he snapped at me, "why are you LIKE this?". I wanted to ask him why HE is like THAT. But, professionally he's better than the competition, so we're stuck. The problem is that seeing him puts both my husband and I into bad psychological states, which is not helpful to my husband. You know you're in trouble when you leave a doctor appointment in which remission has been declared - ought to be cause for celebration, no? -- but you're so upset that you're shaking. Sorry, this is essentially just another rant, not really contributing much to the forum but helpful to me to get it off my chest.Maybe the main contribution is to make folks with better doctors feel better about things! If so, at least I'll feel useful. :-)
HI all,
My takeaway from this article is that EVERYONE with a relatively rare
cancer should see more than one person who specializes in that form of
cancer. In fact, even those with cancers like colon cancer and
ovarian cancer need absolute specialists, and they need more than one
point of view. Because there is no consensus in treatments for many
and the onus is really on the patient to try to make the best
decision.
My own well-educated husband insisted in relying on one top
oncologist''s advice exclusively, even when I brought news and
questions from this listserv and elsewhere on the internet. It turns
out that Ken Anderson is now advising people to do many of the things
I asked Dana Farber for early and was refused: early harvest, biaxin,
free light chain test, lower dose thalidomide, more. (He wasn't my
husband's oncologist because what he recommended in 1996 was an
allo-transplant trial, a trial that was shut down early due to 40%
mortality rates.) Working with Dr. Richardson at Dana Farber has been
life-saving.
http://tinyurl.com/27espq
Hope you are getting the best possible advice.
Best wishes,
Deirdre, MA, USA
I also agree with you Terry
"In my opinion, when your oncologist is not up to the latest drug therapies/dosages and he or she won't listen even when you share the information, it is time to look for another oncologist."
Lisa also has a point when she says "And, judging from our latest appointment with our onc, I think we are in fact in trouble. But we have no decent alternatives."
Terry's comments just reinforce the need for interactive health communication (what we do) and all I can say to Lisa is to do your best to work with your onc- be gentle with him, show him articles, offer phone consultations with Anderson, Durie, etc.
Here's my limited experience with consultations: A few months ago I called MD Anderson about a consultation. I was told that one of the MM doctors would contact my doctor in just a few days. There would be no charge for this consultation. I thought that was curious. After one month and many follow-up phone calls from me, and no phone call from Anderson to my doctor, I finally told Anderson that I was going elsewhere. I've decided that the doctors at Anderson and the intake staff are not on the same page. I've since called Dr. Durie, who is available by appointment to patients or patients' doctors for a fee of $250. I'm glad that I called Dr. Durie because I discovered, among other things, that my onc. wasn't including some monthly lab tests that Dr. Durie believes are important.
Cathy, how long of a lead time did you need to set up a phone consultaiton with Dr. Durie? And how long did it last? Did you need to send lab results etc. ahead of the consult?
David: Thanks. I"m afraid I don't feel gentle toward our oncologist. Actually, I feel sort of murderous. But, I guess he's just trying to do his job. At least I hope so. We'll try to figure out the best way to approach him. He doesn't seem to want to talk to any other doctor or to read what we give him, but we'll keep on giving him documentation on the things we think are most important.
Lisa
Lisa- I mention being gentle to your onc for two reasons-
1) you day he is your best and only hope
2) many oncs don't want to listen to patients
I feel strange always posting on this list about how patients are in charge- but then thinking about your situation. I think that you will get what you want by stroking his ego- hang in there- David
I don't know if this has any relevance or not but I just read on one of the lists that Durie no longer sees patients but that his daily practice is phone consultations. I remember having my onc in Cleveland talk to Durie on the phone back in '96-
After reading Cathy's post, it is even clearer to me- phone consultations are what Durie does. The only thing he does. If there is any way for other oncs (Lisa) to learn, take instruction, I think a call from Durie is your best hope (studies too). David
Lisa,
I called just before the Kos conference, so the lead time was about one month. (Dr. Durie was out of the country for several weeks.) Dr. Durie wants the following records, not the actual films, slides, or CDs. Labs; Bone Marrow Bipopsy report (most recent);
X-ray report; MRI report; PET scan report;CT scan report;Progress notes from your doctor. Phone number:310.423.0702.If you decide to call Dr. Durie, send a cover letter with your name, address and phone number as well as the name, address and phone number of your onc. for future correspondence. You can include specific questions in your cover letter so that Dr. Durie can be sure to address them. (I'm not sure your doctor would talk to Durie, or release progress notes to him, given what you've said. This is something you can discuss with Dr. Durie's assistant when you call, if you decide to call.)
Thanks so much for all this info. We do have a three page report on my husband that outlines the entire case from beginning to the present time; i suppose that could stand in lieu of progress notes. Re what David said about stroking the onc's ego, yes, I think that's the way to go. I realized last time that he perhaps feels unappreciated. he started going on about how in the US we would not get such personal care, that if something happened in the middle of the night that a top doctor would not attend to it, etc. It was out of context, and we finally reminded him that we live in Cyprus and do not intend to move to the US. But in retrospect I think he was just trying to tell us how good we've got it (in his opinion) having him as our doctor. Ok, if it is about egos, it is about egos. I'm not a psychologist but I can play the game if I need to.
I have just looked at my husband's
latest blood test results.
There is no monoclonal band, and his total
protein is fine, but his Alpha 2 is too high,
his Beta is marginally low (7.1, ref range 7.9-14)
and his Gamma is low (5.3; ref range is 11-18).
The July electrophoresis results showed
Alpha2 to be normal (8) and Gamma was better (7.5)
than it is now, although still low, so
these figures worry me. COuld this be the
beginning of something alarming?
We called our doctor and he told us the numbers were nothing to worry about, as they are not pathological indicators. He prefaced this by telling my husband, "Doctors don't usally do this, but because you are a scientist I'll explain it to you." So - doctors don't usually explain test results to patients; rather, patients just wait for their marching orders, which they follow uncomprehendingly? Sigh. The only good thing about the conversation was that he called my husband's test results "impresive."
Hey Lisa, that is excellent news. I am impressed, too! Best wishes, Margaret, Florence, Italy
Great news, Lisa! And, it sounds as if your husband's doctor is opening the lines of communication a little- another bit of good news.
Thanks, friends.
Re the doc, well, who knows. But we'll take whatever we can get! :-)
We got results back from the latest MRI. Verbally the radiologist told my husband that there was "total necrosis of the tumor." I wish they had actualy said it that plainly on the report. But, the report spoke of "significant improvement" and said that the bony lesion has been replaced by fluid, and that there is no longer any abnormal tissue extending into the spinal canal. There is indication of a low grade infection, which doesn't surprise us. Happily, the other lesions on the spine are "not enhancing after the IV gadolinium administration and are probably without clinical significance." So, I hope that means we nipped some would-be tumors in the bud! Overall, we're happy. The other good news is that we FINALLY got a date for stem cell harvest at Royal Marsden in the UK in November, and they have agreed to attempt harvest without chemo (very important for us as we are doing Gerson). I have also been getting some help from the Gerson support list, and was happy to speak to a long-term lymphoma survivor (I lost my mom and my aunt to lymphoma, so talking to someone who beat lymphoma back in the early 90s is a great thing), as well as to Beata Bishop, whose book about beating melanoma through the Gerson method was one of the things that inspired us to try Gerson. Wow, it is quite amazing to actually talk to people who had cancer 15 or 20 or 25 years ago and are still around, just because of carrot juice! :-) Last week I was so anxious about medical issues I had a car accident (worrying while driving is not recommended). No one was hurt, thank goodness. This week I feel newly inspired to carry on. HOpe everyone out there is doing well.
Just got verbal results of the bone marrow biopsy my husband did last week. The doctor said there is "no trace of disease". My husband has less than 1% of plasma cells in his bone marrow. Considering that he stopped Dex two cycles ago (doc doesn't know this; he thinks we only stopped this last cycle) we are particularly pleased. My husband also stopped Thal last week, in prep for stem cell harvest in November. So, we are on a roll. Hope this holds.
Lisa, That's fantastic news - and quite a roller-coaster ride for your husband during the past few months. Best of luck!
Thank you Cathy! But., the roller coaster doesn't stop. I picked up my husband's blood test results today and his CRP is high. That's the infection marker. So, if the infection is flaring up again, we might not be able to harvest. Problem is, we've already bought the tickets, paid for the accomodation, lined up everything in the UK. It would be hard to delay this trip. Guess we'll have to wait and see what the doc has to say. Never a dull moment. I am beginning to understand that ancient Chinese curse - "may you have an interesting life!" .
Lisa- If the tickets and accomodations are already paid for I say go just to have fun, relax, etc. It seems to me that you both could use a little R&R at this point. David
David, truer words were never spoken! ("It seems to me that you both could use a little R&R at this point. ) Between losing the tickets and at least getting a glimpse of London, whatever the medical situation, I'll take the latter. Besides, if we have this consulation and establish a relationship with a UK doc we'll have easier access to a second opinion at crucial junctures. Maybe, just maybe, our doc would even agree to consult with the UK doc in future. Although I'm not going to hold my breath.
Hi, Lisa.
I've been out of town for a few days, so I'm just now catching up on MM news. It sounds as though stem cell collection is not in the cards this time. That must be quite a disappointment. I agree with David and others that you should go to London anyway and meet the new doctor. You'll learn a lot and have a vacation, too. I think there are several raw restaurants in London that will also make raw juices, probably at sky-high prices. But, it may be worth looking into. I hope you and your husband have a fantastic time!
Thanks Cathy! We are hoping that they'll be able to harvest anyway. Infection seems better the past few days. We'll just have to wait and see. Meanwhile I ordered a SMALL juicer online, to be delivered to where we are staying, so we'll be able to keep up some semblance of the protocol. By the way I found the best deals in accomodation to be looking for cottages. We found one that was half the cost of the cheapest rental apartment on the hospital bookings list, and had I been more on the ball we could hve gotten an even better deal. We needed to be in a place with a kitchen to be able to cook, so couldn't consider hotels or B and Bs. .If we get the stem cells that will be wonderful, even if it means dealing with nuepogen side effects etc. If not, well, our five year old will get to see a REAL suit of armor! (that's what we've promised him, anyway).
Lisa, that's good news about the infection. Let's hope it holds so they can harvest stem cells. Maybe your husband will be one of those for whom stem cell collection is a breeze, so that you can enjoy the sights, too.
Lisa-"as well as to Beata Bishop, whose book about beating melanoma through the Gerson method was one of the things that inspired us to try Gerson. Wow, it is quite amazing to actually talk to people who had cancer 15 or 20 or 25 years ago and are still around..."
I finally talked to John Wagner last night. He is the long-term mm survivor- 27 YEARS- He credits many therapies, first and foremost is the Gerson therapy. I will post fully asap.
David
Lisa - How long has he been doing Gerson?
David and Lisa- Are you doing the coffee enemas? Did either become anemic? I concluded I don't process legumes well enough to stay off meat and am doing organic chicken and fish 2-3 times a week
Portlandrose and Lisa- it's interesting that you ask about the coffee enemas. I do colonics but never got comfortable with coffee enemas. John Wagner couldn't stop talking up their benefits. Telling me to start slow, that they make him feel great. And Lisa chimes in saying that her husband now likes them and is encouraging Lisa to do them as well.
DavidÂ
I have been doing two coffee enemas/day since May 2007. (It's part of the Gonzalez protocol.) Prior to that, I had done them for three years, but not so intensely, except for the first year. The caffeineated coffee is supposed to cause your bile ducts to release toxins, so your liver stays clean. The enemas are easy to do, but they take some getting used to. I think they're especially important for cancer patients and anyone taking a lot of drugs. They're also very relaxing, and they do make you feel great.
I have to tell a personal story. My mother is a nurse (she's now 89) who used to give enemas to hospital patients in the '30s. I recently asked Mom if she used to give patients coffee enemas. She said that she had not, although they were available at the time, because they hadn't been ordered. But, she was well aware of them. She also used regular enemas at home, so I grew up knowing that enemas existed, and that they were beneficial to health. I often wonder if those enemas had something to do with my mother's longevity.
 I understand that in Cuba mothers routinely give sick children one or more enemas to eliminate toxins. If I had the flu or a bad cold today, I would immediately do several coffee enemas. Since diagnosis four years ago, I think I"ve been sick with a virus once. It's possible that the enemas have kept the little bugs from taking hold.
I've also done many liver/gallbladder flushes and recommend them as a way to further clean the liver. However, I don't think I would do a flush without medical supervision the first time, and coffee enemas or a colonic every time.
Cathy
Cathy- "The enemas are easy to do, but they take some getting used to. I think they're especially important for cancer patients and anyone taking a lot of drugs. They're also very relaxing, and they do make you feel great." John Wagner echoes your sentiments. John recommended that i buy the Gerson Diet Book to learn about coffee enemas. Any suggestions for learning how/why coffee enemas? David
From Charlotte Gerson's and Morton Walker's book, The Gerson Therapy - The Physiological Benefits of Coffee Enemas:
* It dilutes portal blood and, subsequently, the bile.
 * Theophylline and theobromine, major nutraceutical constituents of coffee, dilate blood vessels and counter inflammation of the gut.
* The palmitates of coffee enhance glutathione S-transferase, which is responsible for the removal of many toxic radicals from blood serum.
* The fluid of the enema itself stimulates the visceral nervous system, promoting peristalsis and the transit of diluted toxic bile from the duodenum out the rectum.
* Because the stimulating enema is retained for up to fifteen minutes, and because all the blood in the body passes through the liver nearly every three minutes, coffee enemas represent a form of dialysis of blood across the gut wall.
The Gerson book recommends that patients do several enemas/day for two years and then cut back to one or two/day thereafter. (Correct me if I'm wrong, Lisa or anyone else.) I'm following the Gonzalez protocol, which recommends doing two enemas/day indefinitely.
I am not sure about how many coffee enemas are recommended for maintenance but I know that long term survivors of other cancers have mentioned doing one or two a week. I wonder how one manages enemas while traveling? my husband will travel for work next week (we're a bit nervous about how he'll manage) and I'm trying to figure out how to approximate the protocol while he's away.Â
Cathy, can I ask what your Gonzales protocol entails aside from the enemas? do you get your supplements from Dr. Gonzales?
I'm reading a book by Aajonus Vonderplanitz, who cured himself of a lot of things through diet. He mentions eary on that he had myeloma, but it gets very short shrift (the book is sort of disjointed). What is clear is that he used diet to heal himself and others of cancer and other illnesses. BUt he recommends the primal diet, lots of raw flesh (meat, chicken, fish, eggs, dairy). In the book he tells a woman with leukemia to eat raw bone marrow and raw organic beef to cure her cancer.
 I do know someone who follows a version of the primal diet and has healed herself of a long list of things. But if one can't get raw organic meat, eggs and dairy it is a problematic thing to attempt. My husband craves things like sushi these days and I wonder if it is his body signalling a need for raw meat? But we are sticking to Gerson for now (he did eat sushi two or three times over the past eight months, and it didn't seem to interfere with anything and it actually seemed to help his wound).
Lisa,
I no longer boil and strain coffee according to Gerson. Instead I use an 8-cup stainless steel coffee pot. It can easily be carried in a carry-on bag when traveling. (I would not put it or any items below in a checked bag.) I think John Wagner uses a coffee pot, too. I use a plastic enema bag that folds to a small size for easy transport as well. It has a hole at the top for hanging on a hook or hanger. Your husband can stand during insertion if the bag is placed on a shower rod, and then sit on a toilet seat which has been covered with paper towels and plastic that he brings with him. In addition, I always take latex or vinyl gloves, a foldable sheet of plastic for the floor, coffee, and lubricating jelly. I purchase hydrogen peroxide, kleenex and bottled water when I arrive.
Re: Gonzalez. I purchase supplements and coffee from NSI in California. Dr. G. is in no way affiliated with NSI. He believes it is a conflict of interest for him to sell supplements to patients. I eat a diet that he determined I am suited for based on a specific hair test that tests for minerals, organ function, toxicity, etc. Dr. G. has about 90 different diets to choose from for his patients. He has told me (and it is on his web site, or was, because that's where I read it initially), that all blood cancer and melanoma patients are carnivores and must eat acidic red meat to balance their natural alkalinity. I can also eat other protein like chicken, turkey, eggs and fish. The only thing I can be certain of for readers is eating red meat (beef, lamb and sometimes pork). The foods mentioned above are specific to my diet. I eat no alkalinizing leafy greens now, whereas I used to eat a lot of them until I became too alkaline. So, now I eat a lot of cabbage and spinach (it is allowed) salads and non-leafy veggies like peas, yams, sweet potatoes, etc. Again, this is specific for me. I'm not sure if it will be the best choice for others. Gonzalez thinks our bodies know what to eat, as long as it isn't sugar and fried foods, etc. In addition to specific foods, I take many pancreatic enzymes during the day away from food, and I do two coffee enemas/day every day. Food should be organic and meats should be grass-fed when possible.
 I'm eating more cooked food now than I have in the past four years, but I'll be eating more raw food later. To me, eating raw meat or sushi would be a big step for me because of parasites, which seem to love to take up residence in weak hosts like cancer patients. But, maybe raw meat works and is safe. I've never tried it. I have a friend who runs a parisitology lab in AZ. He says we don't have many cases of parasites in the US, but when they are in evidence, they can take up residence in organs and kill patients if they aren't dealt with ASAP. Most doctors in the US don't often think of looking for parasites. In my experience, no oncologists I've talked to have ever mentioned them. Fortunately, I had a naturopath who was fanatical about them. She said that most cancer patients have parasites and need to do parasite cleanses to get rid of them. Dr. G. doesn't recommend raw meats or raw fish to patients. I've probably gone into too much detail here.
Lisa,
I just remembered that one of Dr. Gonzalez's patients, model Carol Alt, eats a completely raw diet of veggies, meat and fish. Alt has just written a raw cookbook - and Dr. Gonzalez has written another introduction about the importance of diet and nutrition, just as he did for Alt's first book. For those who want to know more about Gonzalez's ideas, the introduction is an interesting read. I think raw meat for cancer patients is not recommended, but appears to be OK for patients who don't have serious illneses.
Cathy and Lisa-
Thank you both for the how to, the backround, etc. on coffee enemas. I really had thought that I heard/read it all. I will begin asap. DavidÂ
Portlandrose, my husband has been doing Gerson in one version or another since early March. Took us a while to get up to speed, and we have never ever done it perfectly. He took about a month to wrap his mind around the coffee enemas, and started out slow. Was doing 2 a day for a few months; in the past month or two, maybe longer, has been doing 3 a day except when circumstances interfere. I don't think he's ever gotten past three a day. He likes them now (suprise to both of us!) and tells me I should do them too. (I would if I could get the time!) His hemoglobin SHOT up after starting the diet, and has stabilized at around 13-14, without any obvious iron sources (no red meat, no lentils.) By the way legumes are not on the Gerson diet, not for at least a year I think. My husband eats vegetables, fruits, 8 ounces of yogurt or quark a day, brown rice once or twice a week, and oatmeal. He's gained weight and his hematological profile is great. He feels his energy is steadily incrreasing, although he still has problems with his spine and still doesn't work full days. We do another BMB next week (ugh) and another electrophoresis test. He's skipped the last two doses of Dex but is still on 200 mg Thal a day, plus Zometa once a month. After the BMB he plans to stop Thal in preparation for the stem cell harvest in November. I hope he chooses to stay off Thal for a while, seeing as he is in CR, and seeing as we are doing all this hard work re Gerson!
PS
If you are going to try coffee enemas, it is important to take the postassium suppplements recommended by the Gerson protocol. And, the ratio is three juices for every coffee enema. I think following these safeguards will protect against electrolyte problems.Â
All- this will be a quick listing of John's comments (quick because Kosada and I are still working on cps edits) but ask about anything of interest and I will elaborate. Such as coffee enemas. David
John's original diagnosis:
severe back pain-bence-jones, m-spike, bmb confirm mm-though John did not remember values, he said they were relatively low. This led to local radiation at the time. This was 27 yrs ago- he was 30, now 57.
He credits diet, stress (bad marriage) as causes. He was dx at 30,got divorced, remarried and had a family.
He credits many therapies as the reason he has done so well-mental, physical. "I left no stone unturned. I read every thing."Â
1) Gerson (start slowly)-coffee enemas, 13 juices a day,supplementation, liver purges (several in the first few years). He learned to meditate. John now says that learning how to breath deeply is important.
"The first thing I told myself was that I was not going to die. I think that this is the first step."Â
The last 15 minutes of the call was John telling me about coffee enemas. John has two friends with Hep C who were considering a liver transplant. John got them to do coffee enema and after 6-8 weeks John maintains that their livers healed. DavidÂ
David, can you share more info on what supplements John uses? this issue of supplementation is a big question for me: on Gerson most supplements are discouraged. Yet, my husband is using quite a range of supplements (partly because he's still on drugs and we are trying to ward off side effects from the Thal).Â
Thanks,
LisaÂ
David, thanks so much for this info!!!! as you have time i am sure we would all love as many more details as you can mange. Do you know whether John has maintained the Gerson diet all these years?He told me when I talked to him that he relaxed after a couple of years, but I wasn't clear on what that relaxation entailed. the Gerson diet is so stringent, not just in what is allowed but also food prep - no oils, for instance, and no salt. It is ok for at home but impossible to follow if you have to venture out into the world. That is one of my big concerns (after the obvious concerns about sustainability of remission etc.) - how to live a "normal" life on this diet, normal meaning you can go out to dinner or travel and not starve to death.
Lisa and all- I am composing a list of questions for John and welcome any from the list.
1) how long did you maintain the Gerson diet after you began?
2) How does the Gerson diet currently fit into your lifestyle?
3) What do you eat outside your house?
4) What supplements do you take?Â
Other questions? David
David, can you ask John what he thinks about other dietary approaches to myeloma which appear to be at complete odds with the Gerson approach - for instance, the Gonzales approach, which recommends red meat for MMers? I find the contrast in recommendations to be disconcerting. How are we supposed to know who is right? By the way, in the latest Gerson book, Healing the Gerson Way, by Charlotte Gerson and Beata Bishop, they list myeloma in a section titled "Limitations" as one of the diseases that is difficult to cure wiht the Gerson diet (but not impossible). Their main explanation for doing so seems to be the difficulty and slowness of healing bone metastases and pathological bone fractures that so often accompany MM. If that is the only concern (the slowness) it is fine by us - so what if it takes a long time, if it works. But reading it today in conjuction with Cathy's post about the Gonzales approach just made me wonder.
Lisa- I too find it disconcerting that two approaches are at complete odds. After some research, I just decided to eat a small amount of low fat red meat (bison mostly). I will ask John. David
Lisa,
I'll add my two cents here and promise to be brief (which, regrettably,  I wasn't in my earlier post). Charlotte Gerson told me four years ago that most people with MM had not had good results on the Gerson diet. Nevertheless, I elected to do a modified Gerson approach under the guidance of my naturopath. Everything worked fine for a while, but then things changed. The Kelley/Gonzalez approach had similarities to Gerson, but was based on metabolic typing - specific to an individual's needs. That appealed to me. I learned that thirty years ago, Kelley's wife practically died because she was eating a strict vegetarian diet (as I was also doing on the modified Gerson diet). Kelley put his wife on a red meat diet because that was the only thing he hadn't tried, and she began to recover. Today I understand that she is alive and well and eating red meat three times/day. My take is that some people need to eat red meat, while others thrive on a vegetarian diet. The trick is finding out which diet is best for each person. You can read more about Kelley at the following link written by Dr. Ralph Moss:
http://chetday.com/drwilliamkelley.htm
Cathy, I'm glad you WEREN'T brief in your other post! The more info and thoughts the better.
I haven't spoken to Charlotte Gerson, I had only called the institute and spoke to Barbara Conde, who when I asked about MM survivors on the Gerson diet first just said that they didn't follow up with people; then when I pressed her she gave me John Wagner's number Meanwhile I have had constant questions about choosing this approach over the Gonzales approach. We did so primarily becuase I had no idea of how to get metabolic typing here in Cyprus and my husband was immobilized from his fractured spine. I still feel confused and unsure. Yes my husband is responding but what is he responding to, the thal/dex or the diet or the curcumin? who knows. We cannot get organic meat in Cyprus (so far) so following a healthy meat diet here would be hard. My husband is nervous about confusing the issue and having opted to follow Gerson doesn't want to rock the boat at the moment. But we are considering traveling for alternative care/consultation at some point and we really need to decide whether it makes more sense to pursue Gerson or Gonzales (the two main approaches that make sense to me and for which there is medical support and documentation. ) I had understood that one could not do the Gonzales approach without goingthere and that the supplements had to be obtained trhough him and were made especially for that program; that other pancreatic enzymes (for instance) are not the same thing as what the Gonzales program uses. It sounds as if that is not true?
Can you tell me a little bit more about how things changed for you after following the vegetarian diet (how did you know you needed a different approach?) Also, how had you modified the Gerson diet? Did you ever do the full 13 juices/day etc.?
Is it ok to ask you about your current health status? has the Gonzales approach helped you get to remission? or a plateau in numbers? have you tried any of the conventional drugs? (sorry if you have posted on this before and I missed it; also sorry if these questions are an intrusion).
Oh, one other question: can I ask your blood type? My husband is type A, which is one reason we thought the vegetarian approach might work. But, all the nightshades on Gerson don't jive with the blood-type diet for A, as I understand it.
Ahh, it is all so confusing: and so much hangs in the balance!
Hi, Lisa.
Diet is very confusing, I agree. Regarding the Gonzalez approach, yes, you must buy specific supplements he recommends from a company he has designated and not from his office. And, yes, you must meet with him in person for the intake interview. It is possible to purchase Kelley's enzymes on the web or through some health practitioners.Â
At the beginning of the modified Gerson program, I drank 8 green juices/day, sometimes with whey protein, and later reduced that to 6 and then to 4. I ate a vegetarian diet consisting of cooked fish or eggs plus veggies and grains once a day several times a week plus raw alkaline food (salads, vegetables, fruit, nuts, etc.) twice a day every day. I also ate plain yoghurt salad dressings mixed with flax oil. This diet worked fine until I became too alkaline and my IGG headed north. I started researching other options, including the Gonzalez program. I also took another metabolic test, which indicated that I was parasympathetic, not sympathetic, as my first test had shown two years earlier. This meant that my diet would have to include more animal protein and more cooked food. My naturopath told me when I began her program that I could switch metabolic types, and I did. Ideally, she should have suggested that I take another metabolic test 6-12 months after taking the first one. She just forgot, and I didn't know enough at the beginning to ask about it. So, I became more alkaline, instead of becoming balanced. I started taking Thal/Dex and Aredia in April 2007. I've also had a couple of vertebral fractures. I'm in PR. I have a normal CBC and my IGG continues to decline. I frequently feel worse when I don't take enzymes, even though they cause fatigue when I do take them. I suspect that everything I'm taking is having a beneficial effect on my labs. My blood type is A+. I'm not sure if blood types are important in the metabolic diet, from what I know about it. Maybe Dr. Mercola has information about this on his site, since he's an advocate of the metabolic diet. I hope this answers your questions, Lisa. Very confusing! I wish I could eat like my 89-year-old mother, who eats whatever she wants whenever she wants, and tops it all off with a bowl of ice cream!
Thanks so much, Cathy! I find this diet stuff so confusing. And so restrictive. Right now my husband is away at a seminar, and while I am very glad he felt well enough to go, I am so worried about his diet -b ecause there is essentially NO WAY to follow the Gerson diet while away from your own kitchen.
Lisa and Cathy-
I think that metabolic testing and diet were dicussed several months ago- I would search the archives.Â
I remember taking the "metabolictypngOnline" test and like Cathy determined that i am "parasympathetic."Â Actually, as a blood type O negative, the testing told me that I am "parasymbathetic dominant."Â Further "parasympathetic types generally need a lower carbohydrate intake, and a higher fat and proteim intake, relatively speaking, as compared to other metabolic types."Â This is why I decided that it was okay if i ate red meat, chicken, etc.
The metabolictypingonline site also sells supplements- I think Gonzales has it right to not sell anything.Â
Peter D'Amato's book Eat Right for your Blood Type also discusses blood type, diet and metabolic type as well.Â
David
Cathy and Lisa-
When I posted that I began eating low fat red meat after some research I meant metabolic typing as Cathy says " The
Kelley/Gonzalez approach had similarities to Gerson, but was based on metabolic typing - specific to an individual's needs." DavidÂ
David,
I meant to second Lisa's request in my previous post. Does John Wagner still follow the Gerson diet? If not, what kind of diet does he follow? What does he think about other dietary approaches?
Cathy- John told me that he still believes in the Gerson diet and follows it for himself though he has relaxed his routine. This is when he talked about the benefit of supplementation, coffee enemas and juicing- I will try to get more specifics about John's daily routine. David
David,
Can you ask John if he still does daily coffee enemas? If yes, how many each day? When I interviewed him a few years ago, I think he told me that he still does coffee enemas every day, even when traveling, rain, shine, sleet or snow. He was fairly emphatic about the enemas. So, if he's still doing daily enemas, that's 27 years of living to show for them. Of course, he's fortunate to be MM-free.
Cathy- Yes, John does 2 coffee enemas each day. Of all of the different therapies that John did or does (juicing, supplements, liver detox, mediation) John was most emphatic about the benefit of coffee enemas. John told me that coffee enemas both easy to do and made him feel terrific. i think that I am extreme in my health activity- How do I best learn about how to do coffee enemas? The Gerson book? Is there some other source? Anyone? David
David: "How do I best learn about how to do coffee enemas? The Gerson book? Is there some other source?"
I'd check out the Gerson book for a full explanation. If you don't have it I'll try to type in instructions later on. It's not hard. My husband had some glitches at first but ironed them out with practice. The Gerson book is good in that it gives some trouble-shooting pointers.
Lisa- after reading Deborah's link to Ralph Moss' page, Carol's comments, I think that i have a pretty good idea of how to begin. Now its simply of matter of me starting... David
Here's a page from Ralph Moss regarding coffee enemas:
http://www.ralphmoss.com/..., and here's a "how to" page:Â http://www.ineedcoffee.co....
Always use organic coffee if you're going to do them frequently.Â
I would add, always use organic, caffeinated coffee and filtered water. Here's another link for enema equipment and strong, organic enema coffee. Cut back the amount if the coffee makes you jittery. I've used this coffee in the past, and it is strong. I think Gerson recommends any organic, caffeinated coffee from the health food store.
http://www.sawilsons.com/index.html
Linda M - Houston
--Or anyone else following the Gerson protocol - Does anybody use a centrifugal type juicer? Does the type juicer you use really make a difference? I have a centrifugal one and cannot buy another kind right now. Do you think it would be futile to start with the Gerson until I can get one? Thanks for your input!Â
Linda,
We started with a centrifugal juicer because that is what we had. The quality of juice was