Meridian, Chang, Nesselhut and Reality

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PeterG
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Joined: Tue Feb 03, 2015 12:32 pm

Meridian, Chang, Nesselhut and Reality

Postby PeterG » Mon Mar 30, 2015 8:45 pm

New to Forum, so please bear with me. At 55, I was diagnosed with a small distal sigmoidal mass, following a routine colonoscopy in summer 2013 at Kaiser Permanente. Resection performed in Sept. 2013 and it was more distal than suspected--technically rectal. Operation went well, believed to be Stage 2--although they discovered a small GIST tumor that they removed as well. Underwent six weeks of adjuvant chemo-radiation with Xeloda, ending mid January 2014. Everything seemed fine, working out, working full time, feeling well, until Sept. 2014, when CAT scan revealed a solitary 6mm pulmonary nodule. Oncologist recommended watchful waiting and new scan in January. Jan. 17 Cat Scan revealed multiple nodules (four or five) on both lungs, and original nodule grown to around 11 mm. Too small for needle biopsy, and in the wrong place (so they told me.) Kaiser docs (and "tumor board") recommend watchful waiting, but also do a PET scan which reveals some (3?) level of metabolic activity, but not much. Again, they say watchful waiting, and when it gets big enough, they should do a biopsy, and then figure out how to proceed with Chemo. However, they assure me that all that can be done is palliative, and this is essentially incurable. And yet I feel great, have all the energy in the world.

So, to the subject of this post. I have a hard time believing this is fatal, and that I am even sick. I have been doing a lot of research, but it is terribly subjective and I lack any expertise. I read Raymond Chang's Beyond the Magic Bullet and was very impressed. I researched Meridian and Chang and Nesselhut's dendritic therapy, immunotherapy and cocktail approach and found it impressive, but perhaps too wonderful to believe. Dr. Chang has reviewed my medical records and his comments were very sober, coherent, yet promising and positive. I was in NYC and met with Dr. Chang and am seriously considering putting my treatment in his hands. But I am a natural skeptic. I still feel great, am working full time, working out as much as I have time to, and I imagine this is all part of some sort of denial. So, I am looking for feedback, opinions, anecdotes and an critiques. Who has worked with Chang and Nesselhut? What are the upsides and downsides? This does not feel like snake oil, but --like any of the diagnosed--I am vulnerable and susceptible to dreams of a cancer-free Eldorado.
DX Aug. 2013 Resection 09/13.
08/14 CT : .7 CM pulmonary nodule--further CT: growth & multiple nodules.
03/15 15 dendritic cell vaccine-monthly
05/16 begin 3000 MG Xeloda & Avastin
11-16 shrinkage.”Sstable" CT scan scheduled
2/2017: Port installed. Begin Folfiri and Avastin
8/2017: Xeloda, Avastin and Iranotican. 3-wk cycle.
2-6-18: small pulmonary embolim—some growth in one pulmonary tumor. Start Xarelto.
2-8-18 : Change of chemo: Xeloda with Oxaliplatin no avastin.

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lilacbreastedroller
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Joined: Thu Sep 05, 2013 10:25 am

Re: Meridian, Chang, Nesselhut and Reality

Postby lilacbreastedroller » Tue Mar 31, 2015 8:21 am

Howdy. I went to Chang and did the dendritic cell treatment from the Nesselhuts in Germany. I'm still alive to tell the tale, but am definitely not NED. It was not the magic bullet for me. I don't think it is snake oil. If you're interested, I blogged about my treatment on CSN http://csn.cancer.org/forum/128 - go to this site and search for dendritic. I have the same username over there. I need to update that blog section to say that I am still alive.

I did the treatment in 2013 and made it through five shots. No side effects, but a CT scan revealed growth, and I decided to go back to traditional chemo. Dr. Chang agreed since I had so much cancer to begin with - a lot more than you have - and even more after the scan. Chang and my primary onc believe that the treatment did some good and extended my life. My CEA was really high, and although the cancer grew during my dendritic cell treatment, as Chang explained, the dendritic cell treatment actually slowed the growth. CEA was rising, but was not doubling. After each shot, we really could see that it was slowing down - CEA increased but by less and less each time. And, the scan revealed some shrinkage and even some tumor disappearance. My tumors calcify and the CT scan can't show living vs dead tissue. So all in all, the treatment was helpful to me. In hindsight, I probably should have stayed on it, as the subsequent chemo I received did absolutely nothing for me (erbitux and irinotecan), and damaged my innards! But I'm not a rich person, and the dendritic cell treatment was expensive, so that also factored into my decision at the time.

I do believe in immunotherapy and think that it's about the only thing that can really help people like me with massive widespread disease. So now I'm in a clinical trial at NIH that is similar to the Nesselhuts treatment, but uses T-cells instead of dendritic cells, and uses my own tumor instead of the Newcastle virus to prime the cells. And, it is free!!

By your report, you only have lung mets? Still, not a good thing for long-term survival. If you have the money, go for it, the Chang/Nesselhut treatment. There's a woman with a brain tumor, Jessica Oldwyn, who was taking shots when I was, and still is - she has a blog. It's completely arrested the growth of her tumor. Pretty amazing. I think it works better for certain cancers. Colorectal, not so much, but I am alive and not dead. So... But since your mets are localized, why haven't you tried surgery?

good luck. hope it works out for you.
Karin
dx 6/1/12@45yo
RT, 4 liv, 5 lung
7/12 FOLFOX
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
9/14 Stivarga
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns

PeterG
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Joined: Tue Feb 03, 2015 12:32 pm

Re: Meridian, Chang, Nesselhut and Reality

Postby PeterG » Tue Mar 31, 2015 10:29 am

Thanks Karin. Helpful. My impression of Dr. Chang is that he is extremely knowledgable and does not try to "sell" me on his treatment plan. Nor has he made any promises. His plan includes Lentinan and aerosol GM CSF, in addition to other therapies ...epicene tic more. It seems to make sense to attempt to kill these mets prior to chemo, since my quality of life is currently excellent, but I am new to this and my conventional oncologists do not point me in this direction at all...watchful waiting seems really fatalistic. As far as surgery, or ablation, I am told the multiple tiny lung mets are too small and too numerous and to inaccessible to make it feasible. Again, any input is very welcome.

Peter
DX Aug. 2013 Resection 09/13.
08/14 CT : .7 CM pulmonary nodule--further CT: growth & multiple nodules.
03/15 15 dendritic cell vaccine-monthly
05/16 begin 3000 MG Xeloda & Avastin
11-16 shrinkage.”Sstable" CT scan scheduled
2/2017: Port installed. Begin Folfiri and Avastin
8/2017: Xeloda, Avastin and Iranotican. 3-wk cycle.
2-6-18: small pulmonary embolim—some growth in one pulmonary tumor. Start Xarelto.
2-8-18 : Change of chemo: Xeloda with Oxaliplatin no avastin.

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lilacbreastedroller
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Re: Meridian, Chang, Nesselhut and Reality

Postby lilacbreastedroller » Tue Mar 31, 2015 2:38 pm

You're welcome. I was very impressed with Dr. Chang. He really knows conventional chemo, traditional Chinese medicine (TCM), and immunotherapy. Brilliant person. Check out his "museum" of failed chemo treatments, including laetrile ~

The reality of being a stage IV colorectal patient is that it will kill us. Eventually. It's a kill-ya-slowly disease. Unless we're lucky enough for the disease to have spread only to one or two sites in the liver, or a couple of places in the lungs, either or both of which can be surgically removed, we're pretty screwed. We'll be fine until our liver fails, or the lung mets cause pneumonia or drowning, and then whole chain reaction starts, our bodies fail, and we're done for. Grim but hard to picture when you're walking around perfectly healthy.

At this early stage anyway, I think it's a good move to try something unconventional. You can always fall back on hard core conventional chemo. Ask Dr. Chang about your lung mets, though. He was going to send me to Mt. Sinai for VATS, but then the scan showed more spread. He has good connections in NYC so if you do want to pursue additional interventions (surgery, RFA, etc) he can hook you up. Also, on this board there's a "lung thang gang" topic where members have posted about all sorts of good treatments for lung mets, some in the US and some abroad.

Now is a good time to try this therapy anyway since the dollar is stronger against the Euro!

cheers and please update us all on your progress
all the best
Karin
dx 6/1/12@45yo
RT, 4 liv, 5 lung
7/12 FOLFOX
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
9/14 Stivarga
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns

rp1954
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Joined: Mon Jun 13, 2011 1:13 am

Re: Meridian, Chang, Nesselhut and Reality

Postby rp1954 » Tue Mar 31, 2015 3:36 pm

I view many CAM therapies as useful adjuncts, incrementally and additively, perhaps most usefully to the metronomic ADAPT/EXCEL treatment, xeloda + celecoxib. And/or xeloda + targeted cimetidine. You might look at the Life Extension articles on surgery, colon cancer and cancer in general, targeted cimetidine separately. Once you have been mCRC, "watchful waiting" without *any* chemistry or "CAM" strikes me as medical ignorance, and incompetence.

Tracking biomarkers 1-2x month has had a great impact for us, currently including CEA, CA199, LDH, MCV, ESR (for monitoring and correcting longer term inflammation) and maybe hsCRP (pricey for us). That would cover a lot of people. Baselines pre-op and post op that also include CA72-4, AFP, CA125 (f), quantitative d-dimer, fibrinogen cover a lot of possibilities and situations. Why guess and eat all the surprises when you can measure effects sooner?
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

PeterG
Posts: 47
Joined: Tue Feb 03, 2015 12:32 pm

Re: Meridian, Chang, Nesselhut and Reality

Postby PeterG » Tue Mar 31, 2015 6:55 pm

Thanks again, Karin. RP1954, you may be going over my head...CAM means Complimentary and Alternative Medicine, right? and M CRC is metastatic colorectal cancer, I believe. And I think I agree with you, that I need to do something beyond "watchful waiting"--why I am on this board, I suppose--.

But I am really interested in expanding my view of what to do. I am excited about the Chang-Nesselhut approach (the beyond the Magic Bullet/Cocktail/dendritic therapy etc.), but I think being M CRC and grossly ignorant and subjective might be influencing me to grasp at straws. Please direct me to "the Life Extension articles on surgery, colon cancer and cancer in general, targeted cimetidine separately."

Also, as I am still with Kaiser, if I should be pushing my oncologists to track specific biomarkers, please help me with language I should be using, and what it means--I am confessing my ignorance, but while "Tracking biomarkers 1-2x month" makes sense to me in broad strokes, I have no idea what to do with (or how to interpret) "CEA, CA199, LDH, MCV, ESR (for monitoring and correcting longer term inflammation) and maybe hsCRP" . Nor do I know anything about "CA72-4, AFP, CA125 (f), quantitative d-dimer, or fibrinogen." Are these all standard indices and metrics about which I should be learning ? And are they standard enough that I can get a factory-like HMO (Kaiser Permanente) to order and interpret these tests and analyses? Then, how will I know what to make of the results, and where to push.

Sorry for all the questions, but you have helped me note how ignorant I am. I suppose I would like to entrust my care to someone like Dr. Chang and rely on his or her expertise. Seems you are advocating for a much more pro-active approach.

Thanks,

Peter
DX Aug. 2013 Resection 09/13.
08/14 CT : .7 CM pulmonary nodule--further CT: growth & multiple nodules.
03/15 15 dendritic cell vaccine-monthly
05/16 begin 3000 MG Xeloda & Avastin
11-16 shrinkage.”Sstable" CT scan scheduled
2/2017: Port installed. Begin Folfiri and Avastin
8/2017: Xeloda, Avastin and Iranotican. 3-wk cycle.
2-6-18: small pulmonary embolim—some growth in one pulmonary tumor. Start Xarelto.
2-8-18 : Change of chemo: Xeloda with Oxaliplatin no avastin.

rp1954
Posts: 1325
Joined: Mon Jun 13, 2011 1:13 am

Re: Meridian, Chang, Nesselhut and Reality

Postby rp1954 » Wed Apr 01, 2015 7:04 am

PeterG wrote:Thanks again, Karin. RP1954...

CAM means Complementary and Alternative Medicine, right? and mCRC is metastatic colorectal cancer...
yes

"the Life Extension articles on surgery, colon cancer and cancer in general, targeted cimetidine separately."
some LEF pages: colorectal cancer specifically; cancer generally; surgery article and special report There is a lot of discussion about cimetidine in the archives here. There are basically two kinds of papers and uses: cimetidine before and after surgery, and cimetidine for long term use, for years, effective in majority of advanced crc patients with specific biomarkers that identify who benefit should most from it.

But I am really interested in expanding my view of what to do. I am excited about the Chang-Nesselhut approach (the beyond the Magic Bullet/Cocktail/dendritic therapy etc.),
We don't put all our chips on one treatment or technique, we trial, monitor and add successful ones together or in a sequence. We don't spend our budget on one shot, we make sure we've allocated around enough for multiple kinds of treatment.

...might be influencing me to grasp at straws.
Critical thinking, reading and second, or outside, informed opinions are essential, for both CAM and "standard" offers.

Also, as I am still with Kaiser, if I should be pushing my oncologists to track specific biomarkers
Yes. In some cases they need to learn to improve their game, even if they may not do it now when you first ask. If they won't, you can order them online. Our first year, we skipped on some insurance arguments and delays; we paid cold, precious cash to gain time and options. Also better data can obtain more timely answers, more favorable treatment or insured coverage. Or change doctors' "flat no" into a willing "yes".

..."Tracking biomarkers 1-2x month" makes sense to me in broad strokes, I have no idea what to do with (or how to interpret) "CEA, CA199, LDH, MCV, ESR (for monitoring and correcting longer term inflammation) and maybe hsCRP" . Nor do I know anything about "CA72-4, AFP, CA125, quantitative d-dimer, or fibrinogen." Are these all standard indices and metrics about which I should be learning ?
CEA, LDH (in Chem20), MCV (in CBC) and ESR or hsCRP are standard lab orders for various related medical reasons, not necessarily the cancer itself. In some cases, another biomarker, usually CA19-9, might be demonstrated to replace CEA, if CEA is obviously unsatisfactory and the other is/has been above normal range. CA72-4, AFP, CA125, quantitative d-dimer, or fibrinogen are baseline data that you might gather before/after surgery and once a year, unless they become more immediate. The biomarkers listed here are the short answer that I was looking for 5 years ago, back then effectively wishing for the tooth fairy.

And are they standard enough that I can get a factory-like HMO (Kaiser Permanente) to order and interpret these tests and analyses?
On many parts, no. In some cases, not yet. Whether you keep KP long term, you'll probably need to find some additional support elsewhere. Outside consults and sources can clear up many questions.

Then, how will I know what to make of the results, and where to push.
We often learn fastest by doing and asking questions, "on the job".

you have helped me note how ignorant I am...
We were all born that way. It can be fixed faster than you may think. Read, the LEF articles, read some of the cancer books by Block, Quillin, Servan-Schreiber, Life Extension, and some of the archives here.

I suppose I would like to entrust my care to someone like Dr. Chang and rely on his or her expertise.
In most cases, it takes more than one stop or doctor to achieve that. If you can pay the bills, travel included, Chang may be sufficiently knowledgeable to handle and accommodate more of that expectation. Often times, people structure their doctors for multiple support, like MSK (distant facility and special skills) with a local doctor, or an oncologist and an outside CAM doctor.

Seems you are advocating for a much more pro-active approach.
Yes, but pro-active can save you a lot time and money. Time from guessing, not knowing but worrying. Time and money searching for answers in the wrong places, being told the same or unsatisfactory answers multiple times - like "No", "it's standard", "no one knows", "go home". Time being wretched or on this earth. Lack of success is the most expensive, insured or not. In my eyes, time invested up front and closest to an informed answer is the most valuable.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

PeterG
Posts: 47
Joined: Tue Feb 03, 2015 12:32 pm

Re: Meridian, Chang, Nesselhut and Reality

Postby PeterG » Thu Apr 16, 2015 10:09 am

Looking for input on this from educated, intelligent Stage 4 folks, doctors, caregivers, familiar with asymptomatic lung met patients and non-chemo treatment. Skeptics as well as enthusiasts invited to give feedback. Need all the advice I can get:

I had another CAT scan--last one had been in January and we wanted to determine whether there had been any growth in nodules or new nodules etc. Personally, I was interested because--although far fetched, I had been observing a nearly-strict ketogenic diet since the end of January. Result, according to Kaiser oncologist (English not first lang.) is the cryptic, but essentially comprehensible:

" I do receive your CT scan report and reviewed the CT with our radiologist who confirmed the masses in lungs are biopsible now (the number and size of the lung masses are larger and more). I sent the referral to interventional radiologist for biopsy. They should contact you very soon. Below is the CT impression. I will mail a copy (whole report) to you as well and will see you in 2 wks for discussion of biopsy report and the management.
** IMPRESSION **:
Increase in size and number of pulmonary nodules suspicious for progressive metastatic disease."

However, Dr. Chang had (prior to Scan) told me that probably the potential risks of biopsy likely outweigh any benefit biopsy might provide. So I emailed the message from the Kaiser oncologist to Dr. Chang for his impression. Here is his(slightly redacted) response:

"I really honestly don't see that it will add too much info except confirm what we already know. There is always the risk of biopsy as well as a theoretical risk for
spreading the cancer as well, so I am not in favor. If needs be, esp if they are progressive, lesions can always be biopsied at a later point in time, but I see little
chance of actionable information to be gained at this point." Chang also instructed me to ask Kaiser P. for the following labs: CEA, ceruloplasmin levels, vit D3 done as 1,25 OH-D3 levels, c-reactive protein, homocysteine, and chemistry panels.

I sent both Kaiser Onc's note, and Chang's response to an (as of now unnamed) oncologist with whom I am consulting, from a well known cancer research facility (cannot use names for the moment on that one, but impeccable credentials) who responded:

"I agree, you don't need to do a biopsy. Having several lung nodules that are new and growing is consistent with metastases. I would also follow the CEA level

Chang has proposed the following course of treatment, which--if not cost-prohibitive--I am planning to follow:

1) metronomic chemotherapy using either cytoxan or S1;

2) inhaled GmCSF for lung metastasis, combined with other immune approaches--theory: it attracts the dendritic cells into the lung. Should start before dentritic vaccine prepared in Germany;.

3)Lentinan, manufactured by Ajinomoto;

4) γδ T cells as a potential tool in colon cancer immunotherapy--NCBI is a monthly infusion--synergistic with dendritic vaccines. Once a month IV.

5) Dendritic vaccine --prepared in Germany with Nesselhut, then after first treatment, administered in New York.


Your insight, analysis and suggestions are welcome.

Peter
DX Aug. 2013 Resection 09/13.
08/14 CT : .7 CM pulmonary nodule--further CT: growth & multiple nodules.
03/15 15 dendritic cell vaccine-monthly
05/16 begin 3000 MG Xeloda & Avastin
11-16 shrinkage.”Sstable" CT scan scheduled
2/2017: Port installed. Begin Folfiri and Avastin
8/2017: Xeloda, Avastin and Iranotican. 3-wk cycle.
2-6-18: small pulmonary embolim—some growth in one pulmonary tumor. Start Xarelto.
2-8-18 : Change of chemo: Xeloda with Oxaliplatin no avastin.

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juliej
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Re: Meridian, Chang, Nesselhut and Reality

Postby juliej » Thu Apr 16, 2015 1:04 pm

PeterG wrote:I sent both Kaiser Onc's note, and Chang's response to an (as of now unnamed) oncologist with whom I am consulting, from a well known cancer research facility (cannot use names for the moment on that one, but impeccable credentials) who responded:

"I agree, you don't need to do a biopsy. Having several lung nodules that are new and growing is consistent with metastases. I would also follow the CEA level

Peter, my MSK thoracic surgeon doesn't recommend lung biopsies either. The fact that they are growing is consistent with metastases. Besides the risk of seeding, he said negative biopsy results are viewed as "inconclusive" (not truly negative) because the probe only picks up a few cells and might have missed the cancer cells. I agree with rp1954 about also getting LDH, MCV, and ESR tested, and CA19-9 if CEA is not a good indicator for you.
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 5/11/2018, CEA<1

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Sophy
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Location: New Zealand

Re: Meridian, Chang, Nesselhut and Reality

Postby Sophy » Thu Apr 16, 2015 2:41 pm

Hi Peter

I too had just lung mets and chose the laser surgery treatment in Europe. This study done at the Royal Brompton and Marsden hospitals in London shows the results they have been getting by using chemo both before and after surgery.

http://link.springer.com/article/10.118 ... ltext.html

It is a normal treatment in UK, publicly funded for citizens, suitable for up to 100 mets and also in areas of lung difficult to treat with normal surgery.

I didn't know about the benefit of chemo before surgery so missed out on doing that but I am doing follow up ADAPT. Not sure if it is working but have scan in a couple of weeks so will know more then.

This surgery doesn't work for everyone, a few on the board have tried it and new mets grew after. It is also expensive and not usually covered by insurance. If you are interested do a search for Professor Rolle in Coswig and Mr George Ladas at the Royal Brompton.

Hope this helps (even though it didn't answer your question)

Sophy
dx T3N1M0 Feb 11 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
Nov 2017 CT show still NED
Continuing ADAPT

rp1954
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Re: Meridian, Chang, Nesselhut and Reality

Postby rp1954 » Fri Apr 17, 2015 4:16 am

Chang has you lined up for an immunochemo treatment stack with its experimental components recognizable from papers. It would be valuable to hear his comparison of his recommendations with the choice of ingredients for Life Extension's immune building recommendations and his Anti-Cancer Cocktail book that discusses many of the same ingredients. If you can optimize immunochemo along with surgery like Sophy's choice, you'll have a better shot at getting out of the woods.

Cyclophosphamide or S-1 (highly DPD inhibited tegafur) replaces metronomic xeloda or UFT (DPD inhibited tegafur) for your oral chemo backbone. Lentinan is an injectable predecessor to oral PSK in Japan for immune modulation, although I am not sure how much they overlap. Asians will often use 5-10 secondary immune modulators, mostly mushroom extracts. I am curious about the supply arrangements for S1 (TS1), since that is not normally available in the US yet. There is only limited experience on the board with cyclophosphamide, not sure whether the dosages are comparable. I am not aware of S1 experience written up for CRC, outside of Asian papers.

Several years ago, we had a conventionally unsurvivable situation. We were looking for an effective experimental chemo stack and an uncommon second stage surgery, already repeatedly denied. We wouldn't have gotten either without the extra biomarker data and treatment improvements. The chemo that worked, the elevated CEA was seemingly unresponsive with the large mets still in, still to be surgically removed. However the elevated CA19-9 immediately showed a beautiful decay curve back to a low residue baseline in 6 wks. So we had our post surgical adjuvant candidate lined up right before surgery. And it's still going with active biomarker monitoring and management of changes.

Specialized knowledge is cumulative, we don't rely on one source of answers. We want the sum of the best parts. We don't anguish about comparatively small money spent on extra blood tests not immediately used. We gnash our teeth over missed blood tests, like those not started at the beginning or not checked regularly enough. Btw, the best value, a high volume blood lab's deal, is only about 1/5 the hospital lab cost.

Regular medical thinking about biomarkers and "CEA only" has several circularities driven by other peoples' agendas and convenience. It would be kind of like WWI pilots flying through clouded mountain passes with only a compass and perhaps no altimeter, refusing to learn to use modern avionics - no surprises when the airmail runs late. Some of the asian countries, perhaps more value oriented, are publishing more papers with commonly available biomarkers with respect to CRC.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

Julie YW
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Re: Meridian, Chang, Nesselhut and Reality

Postby Julie YW » Mon Apr 20, 2015 9:40 am

Hi Peter,

I did a search of this forum and found that no one has really provided their thoughts of Dr. Chang. I've gone to see him 3 times, once for an hour for $875 and then two more times for a half hour each time for $450. At first, I liked him and trusted him but now I'm not so sure. He suggested some of the things he's suggested for you. For me, he also suggested hyperthermic treatments (shooting heat through my body). What I found odd was that he would suggest something, like metronomic chemotherapy, and then he'd print a study out in his office and give it to me to read. The study says there's no evidence that metronomic chemotherapy is more effective than regular chemotherapy. At my last visit, he recommended scorpion venom (for $600 for a month supply -- $95 off what I would have to pay if I bought it directly from the manufacturer). He told me how there was a story about it on Nightline. I went home, looked it up and the story pretty much said scorpion venom is snake oil. So I'm just not sure why he gives me to stuff to read or watch that negates what he's recommending. The only thing I've been willing to do are supplements but even so I don't want to pay $375 a month for the PSP mushroom and Artensunate that he recommends.

While theoretically I suppose I could spend the money on all of these treatments, I find myself not willing to because I don't think I believe. The stuff isn't going to cure me. Maybe, maybe it might buy me some time. But I find myself thinking I'd rather leaves the tens of thousands of dollars or hundreds of thousands of dollars to my children or maybe even to real cancer research.

I was also lukewarm about his bedside manner.

My two cents. Best of luck in making your decisions. They're truly difficult.

Julie
DX July 2013, 37yo
12 of 68 LN
Stage IV w/ drop peri met
Folfox 8/12/13
Clean scans 1/24/14
Rising CEA 2/13/14
HIPEC 3/13/14
Folfiri 4/21/14
Recurrence in lungs 12/19/14
Xeloda & Avastin
Follow my blog: http://julieyipwilliams.wordpress.com/about/

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lilacbreastedroller
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Re: Meridian, Chang, Nesselhut and Reality

Postby lilacbreastedroller » Tue Apr 21, 2015 11:44 am

Julie - Dr Chang didn't prescribe me any supplements... With the dendritic cell, I got IL-4 and leukine (paid for by insurance), 1000 mg Zeloda per day (metronomic dose) and I think he had me take 5,000mg vitamin D a day which I bought at CVS. One of the white blood cell builders I inhaled and the other was given by IV. No mushrooms, no supplements, nothing. Maybe I was their idea of a control group! I told Dr. Chang that I didn't take any supplements at all, and he was very surprised because he said that most cancer patients did. I'm not anti supplement but I don't take them because I don't know which ones would be beneficial, etc. He really didn't know what to make of me! Maybe the complementary therapies he prescribes differ from patient to patient, or 1.5 years later he and the Nesselhuts have changed their protocol based on patient successes or failures. Don't know. He really didn't know what to make of me, as my bloodwork was always good and I was (and still am) physically very healthy, despite the amount of cancer that I have. He didn't know why I was so healthy... he did say that my immune system was powerful, though, based on my body's reaction to the DC injections.

Anyway - he didn't push any expensive supplements on me, but I did ask him questions about different things and he told me what he gave to other patients (mushrooms, etc.)

Karin
dx 6/1/12@45yo
RT, 4 liv, 5 lung
7/12 FOLFOX
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
9/14 Stivarga
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns

PeterG
Posts: 47
Joined: Tue Feb 03, 2015 12:32 pm

Re: Meridian, Chang, Nesselhut and Reality

Postby PeterG » Tue Apr 21, 2015 12:14 pm

Confusing, isn't it? So, is it worth it to go forward with dendritic therapy with Nesselhut and Chang, through Meridian? Insanely expensive. The supplements, he explained as "appetizers and deserts," I think, with the "main course" being immunotherapy--the prelude to, then the Newcastle Virus, and follow up, including Hyperthermia. Scorpion Oil does bring to mind "snake oil," and after reading your (Julie's) post, I looked it up. There have, weirdly, been studies, and it is being prepared and sold in Cuba...concept is scary, but so many effective medicines actually do originate in plant and animal sources. Hyperthermia does seem to be rather strongly supported in a lot of clinical work. And the compliment of multiple therapies--cocktail approach--does seem consistent with Chang's Beyond the Magic Bullet. The book is, of course, something of a primer, and is a few years out of date. But it is inspiring, if nothing else.

As far as bedside manner--I have a hard time figuring the guy out. He is super responsive, and very willing to engage. But I do not have the objective background in cancer studies--in biology, genetics, medicine, herbology...To some extent we are an incredibly vulnerable bunch, us Stage 4 CRC folks,

Again, anyone with statistical, analytical or even anecdotal knowledge of Chang and Nesselhut, especially long term, please chime in!

Thanks,

Peter
DX Aug. 2013 Resection 09/13.
08/14 CT : .7 CM pulmonary nodule--further CT: growth & multiple nodules.
03/15 15 dendritic cell vaccine-monthly
05/16 begin 3000 MG Xeloda & Avastin
11-16 shrinkage.”Sstable" CT scan scheduled
2/2017: Port installed. Begin Folfiri and Avastin
8/2017: Xeloda, Avastin and Iranotican. 3-wk cycle.
2-6-18: small pulmonary embolim—some growth in one pulmonary tumor. Start Xarelto.
2-8-18 : Change of chemo: Xeloda with Oxaliplatin no avastin.

trillium50
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Re: Meridian, Chang, Nesselhut and Reality

Postby trillium50 » Tue Apr 21, 2015 11:03 pm

A very good one is Professor Vogl but he is Germany based


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