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My own treatment for endometrial cancer has been pretty much by the book: first surgery (hysterectomy plus bilateral salpingo-oopherectomy, or removal of uterus and both ovaries and fallopian tubes), then chemotherapy (doxorubicin and cisplatin). I was supposed to have had radiation, but at that juncture metastases to my lungs were found, which made pelvic radiation moot as a treatment strategy.

In other words, cut, poison, and burn was the planned treatment sequence I was supposed to experience, and that's still the case for the vast majority of people with cancer, solid tumors anyway. I imagine it's likely true that the surgery was helpful for me, because the tumor was large and had spread to several lymph nodes, not all of which could be completely resected. Chemo, however, appears to have been useless in my case; IIRC, the response rate to my particular cocktail is no better than about 35%. For that matter, chemotherapy as an adjuvant  treatment of endometrial cancer is fairly recent: the standard of care for advanced disease until the past 20 years had been surgery plus radiation. Surgery plus radiation didn't work very well, and eventually an array of chemotherapies was developed. They do tend to work somewhat better than surgery plus radiation alone, but in my case they didn't.

Some women are fortunate enough to have a good, strong response to Megace, which is an artificial progesterone that interferes somehow with estrogen secretion. (Generally unknown fact: even post-menopause, surgical or natural, a woman's fat cells continue to create and share estrogen.) I was in that small group, fortunately, and so far so good.

But in no way have I encountered to this point any oncological treatment that was especially novel, much less experimental. No clinical trials, no targeted therapies. There aren't many of them for endometrial cancer at this point, though probably more now than there were five years ago. (I feel honor-bound to note that I have also pursued several other therapies considered complementary, and there's a good chance that these have had a synergistic effect along with the Megace.)

A recent article in the New York Times, "Patient's Cells Deployed to Attack Aggressive Cancer," renewed my curiosity about such innovative techniques, an interest which is usually not high on my awareness list. The patient featured in this article is a woman with metastatic bile duct cancer, whose prognosis was extremely limited until she became part of this experimental treatment.

Researchers at the National Cancer Institute sequenced the genome of her cancer and identified cells from her immune system that attacked a specific mutation in the malignant cells. Then they grew those immune cells in the laboratory and infused billions of them back into her bloodstream.

The tumors began “melting away,” said Dr. Steven A. Rosenberg, the senior author of the article and chief of the surgery branch at the cancer institute.

The woman is not cured: Her tumors are shrinking, but not gone. And an experiment on one patient cannot determine whether a new treatment works. But the report is noteworthy because it describes an approach that may also be applied to common tumors — like those in the digestive tract, ovaries, pancreas, lungs and breasts — that cause more than 80 percent of the 580,000 cancer deaths in the United States every year.

That's something, isn't it? The ultimate targeted therapy, so to speak.

My general question for you tonight is whether you yourself, or the person for whom you give care, have had personal experience with a novel, allopathic treatment for cancer. If not, is it because there aren't any for your type of cancer, or because you haven't exhausted other options yet?

Yes, I'm leaving the definition of "novel and innovative" up to you. What's considered a standard of care for the hundreds of varieties of cancer is not something I'm qualified to determine, but I assume you can make educated statements about the one(s) with which you have the closest experience.

And, if you haven't had any such treatment at all and none is on the horizon (for some good reasons, like remission or cure, too), then I ask you to think about the methods of treatment you think seem promising. If you had several million dollars to fund a study, where would you put it and why?

Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.

Originally posted to Monday Night Cancer Club on Mon May 12, 2014 at 05:00 PM PDT.

Also republished by Community Spotlight.

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Comment Preferences

  •  Good evening, friends! (57+ / 0-)

    I need to go on a quick errand, delayed today because we had tornado warnings for over an hour. There was a confirmed tornado touchdown in the next county north of us, but fortunately no injuries and no damage were reported. I'll be back very soon.
    Thanks for being here and taking part in the conversation.

    Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon May 12, 2014 at 04:59:54 PM PDT

  •  Nothing novel here (14+ / 0-)

    Renal cancer of the clear cell type is straight forward- just cut. Chemo tends to be ineffective though there is progress on that. Barring anything else no need to burn as cut takes it all.

  •  I have been using a lot of novel therapies. (22+ / 0-)

    In the process I've discovered 2 authors that I love.

    One is David Rosenfelt. He's like John Grisham only his books are more cheerful and his characters likeable.

    His dialogue is so funny. In one book the love of his life has just come home from surgery and he asks if there is anything he can do for her.

    Her request is to be held all night. He asks" Is this going to be an every night thing?" and she says "No, I'll find someone else to hold me tomorrow night". He agrees to try it for a year and see how it goes.

    I like him so much I read his acknowledgements. In one book he says no to any acknowledgements because really, these people wouldn't thank him and besides last time they bickered over who got thanked in what order.

    In another, after being accused of putting on airs for thanking famous people he has a 2 page list of names like:

    Denzel and Martha Washington
    Robert E. and Spike Lee

    I love this guy!

    The other author is Patricia Briggs.  She writes something that I think is called "Urban Fantasy". Werewolves, witches, vampires, and magic all in a modern day setting.

    Her books are great, ignore the racy covers. I thinking of a different kind of novel?

    Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

    by ZenTrainer on Mon May 12, 2014 at 05:58:35 PM PDT

  •  Only a little bit novel - experimental study (21+ / 0-)

    I had muscle-invasive bladder cancer, diagnosed in October 2011.  I started with the typical therapy, neoadjuvant chemo, Gemzar and cisplaten, followed by radial cystectomy and installation of a neobladder.  Since I seemed well-versed in science (Ph. D. in geology), my surgeon explained his current research and signed me up for his research protocol.  

    It seems that a major predictor of survival following breast cancer is the number of lymph nodes removed - more means better survival, as the first spread of the cancer is through the lymph system.  My surgeon and others are checking if the same applies for bladder cancer as well.  About 200 of us were given either standard lymph node removal or enhanced removal between January 2012 and December 2013.  We're all being evaluated for the standard five years, so the doctors can't even touch the data until Januart 2017.  It's not even single blind, as the doctors have to know how many nodes to remove, and they are obligated to tell me.  Randomization was done on an anonymous basis by a statistician at the NIH.

    All well so far, but I have three more years till I'm "cured".  On the other hand, my surgeon has penciled in an appointment with me in mid-2017 to discuss the results of the study, and he told me he expects me to show up.

    Having a relatively standard treatment is useful in the voter ID diaries.  I note that chemo poisons cancer cells as well as fast-growing cells I want to keep. like bone marrow, hair and stomach lining cells.  If chemo did more damage to the cancer thanit did to me, it's worth it, but if it makes me sick with no good effect, it's time to stop.  I point out that voter ID laws prevent in-person fraud, but also disenfranchises legitimate voters.  I tell voting ID advocates that if they can prove that the law prevents more fraud than it does disenfranchising voters, I'll support their law.  So far, every voter ID bill proposed seems to prevent at most a few hunderd cases of fraud, but disenfranchises tens of thousands.  Therefore, I can rationally oppose every single voter ID law proposed, using the "chemotherapy rule".

    The Scout Law (trustworthy, loyal, helpful...) is a GREAT liberal manifesto.

    by DaytonMike on Mon May 12, 2014 at 06:14:26 PM PDT

  •  The two of you really need (13+ / 0-)

    to put a show together and take it on the road ...

             ZT and PK's All-Star Cancer Follies Revue
    or some such.

    I would buy tickets. Really. I suspect I would not be the only taker. And, as Mrs. Slocum would say, I am unanimous in that.

    In times like these, we cannot make too much music.

    by ProvokingMeaning on Mon May 12, 2014 at 06:16:36 PM PDT

  •  Thanks, everyone who stopped by tonight. (14+ / 0-)

    I have to start getting ready to sleep. I guess I've still not recovered from my gallivanting last month. It takes a lot out of me to travel, but I still love to do it.
    Happy and healthy week to us all.

    Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon May 12, 2014 at 08:34:34 PM PDT

  •  You want novel ... (20+ / 0-)

    For a long time, primary liver cancer (hepatocellular carcinoma) was virtually untreatable if surgery or a transplant weren't an option (and neither is for me at the moment). However, since it's the number 5 cancer in the world (mostly Asia and Africa, #15 in the US), a lot of new treatments have been developed, some here, some in China, Hong Kong and Japan and elsewhere.

    All of these therapies apply to some other types of solid tumor cancers - kidney, prostate, ovarian and others.


    Tomorrow I see an interventional radiologist, and I hope he's going to recommend some kind of embolization. There are 4 types. All start by threading a catheter through the femoral artery, up the aorta to the celiac trunk, and the branching off into the hepatic artery. The liver gets most of its blood from the hepatic portal vein, but the tumors get theirs from the hepatic artery.

    The first method is just simple embolization - the catheter is used to inject stuff into the tumor's vasculature to plug it up. That's called TAE - transarterial embolization.

    The second type is TACE - the 'CE' being chemoembolization. Drugs (like the doxorubicin or cisplatin mentioned in the diary) are injected and then tiny sponges or other plugs are inserted via catheter to try to keep them in place.

    The third type is DEB-TACE. 'DEB" is drug-eluting beads. Tiny beads are soaked in a chemo solution - usually doxorubicin if available (shortages occur) - and pumped through the catheter into the tumor. The beads keep the chemo in place better and lead to both better results and fewer side effects.

    The last type is radio embolization. Instead of a chemo drug, millions of tiny radioactive spheres of Yttrium-90 are injected. Unlike X-Rays, Y-90 decays by beta decay - which is a charged particle - so the effective distance for the radiation is 2.5mm to 11mm, preventing damage to surrounding organs and most of the healthy parts of the liver. It's about as effective as DEB-TACE, almost no side effects (although the initial radiation levels are about equivalent to sending your liver to Fukushima - as much as 200 Grays). However, the spheres cost about $20,000 per treatment, and that's not counting other drugs for pre-assessing the treatment, CT and PET scans, doctors, hospital, etc.

    The TACE variations are inpatient (overnight if no serious side effects), Y-90 is outpatient. For any of them, I'd probably need two treatments at least, since I have large tumors on each lobe of my liver.

    My insurance considers each of those medically necessary, but requires pre-approval.


    Until not long ago, none of the various IV chemotherapies were effective with liver cancer. Now there is a drug - Nexavar (sorafenib) that is somewhat effective. It's an oral drug - 4 pills daily. By itself, it increases life span on average from 7 months untreated to over 11 months with treatment. Those are averages, and most people (not me) already have a serious underlying liver disease, like hepatitis B or C or cirrhosis. Sometimes the disease kills them before the cancer does. Combined with other treatments, it can be more effective.

    I'm waiting for my first 30 day supply of Nexavar to arrive. It only costs about $333 - per day. $10,000 per month. You can't go to Safeway (I cry when I think of all the gas points I'm losing) or RiteAid or WalMart to get it - it ships FedEx from one of about 10 suppliers.

    My insurance considers it medically necessary, but requires pre-approval. I got approval Friday.


    Normal radiation therapy is both dangerous and somewhat ineffective for liver cancer, because of the other nearby organs and potential damage to the liver itself. There are two new alternatives.

    The first is SBRT - stereotactic body radiation therapy. To start, you lay down in a form, get wrapped in plastic, and they make a form to fit your body and hold it precisely in place. A week or so later, you come back for 5 treatments over 2 weeks - basically every other day. SBRT uses a small linear accelerator to generate a precisely controllable beam - precise for both position and intensity. It's about as effective as the embolization treatments above, and has virtually no side effects.

    The other is Proton Beam Therapy - PBT. This utilizes a 196 ton proton source. In terms of treatement, it's more like standard radiation - 5 days a week for 6 weeks, more or less. It also has the precision features of SBRT, plus, like the beta particles above, the protons are charged particles, so they recombine with opposite charged particles in a small distance, reducing damage to healthy tissue. PBT is probably extremely expensive - I'd guess in the $75,000 and up range.

    My insurance considers both SBRT and PBT investigational. Medicare tends to accept them.


    There are various ablation therapies that basically involve some percutaneous, laproscopic or open surgical methods to directly kill tumor cells. Probably the most effective is RFA - radio frequency ablation - where electrodes are inserted in the tumor and high frequency electricity zaps the cells. Usually the electrodes are guided by imaging and surgery isn't needed. RFA can be extremely effective, but it requires smaller tumors than I have. The hope is that embolization can downstage my tumors to where RFA or surgical resection is possible.

    The other ablation techiques are microwave (same basic idea, higher frequency) and cryoablation, using extreme cold to kill tumor cells. I don't know much about either, as they aren't likely options for me. An older technology is ethanol injections into the tumor. If nothing else works, I may try that at home, by the oral route.

    RFA is considered medically necessary by my insurance.

    What's really needed is something to stimulate the health care system into operating more smoothly, as well as ACA and Medicare changes to make new technologies and drugs affordable to average people. It took 1 month to get a firm diagnosis - a $100 blood test would have done it same day I saw the first oncologist (no longer at the clinic - my new oncologist is great). Then I spent nearly a month trying to get an appointment at the Univ of Washington Med College Liver Tumor Center (LTC) - that was another mess, caused in large part by insurance requirements and snafus on the part of LTC. So I'm hoping local people and facilities will do my treatment - the docs, nurses, clerical people and hospitals here are some of the best I've seen.

    Over 2 months to begin treatment - average life span after tumor discovery is 3 to 6 months.

    I wrote a diary about the whole thing, but not sure if I'll publish it.

    No matter how cynical you become, it's never enough to keep up - Lily Tomlin

    by badger on Mon May 12, 2014 at 10:12:22 PM PDT

    •  I would encourage you to publish! (10+ / 0-)

      Just this one comment is SO informative, and I am sure there are readers benefitting.

      SBRT sounds a bit like what I discovered for prostate cancer that is being pioneered (as I understand...perhaps there are others doing it) at the Anschutz Medical Campus University of Colorado Hospital​, in Aurora  Precision Biopsy, or what was called Targeted Focal Therapy is described as a "lumpectomy" for the prostate.  Prior to this, and still, I believe, the standard of care is always removal of the entire gland, or standard radiation, which eventually kills the entire gland.

      Great stuff in this comment, and I am hoping Nexavar works well for you.  Thanks for posting.

      "A liberal is a man or a woman or a child who looks forward to a better day, a more tranquil night, and a bright, infinite future." - Leonard Bernstein

      by outragedinSF on Tue May 13, 2014 at 12:01:31 AM PDT

      [ Parent ]

      •  There are some I left out that may be similar (5+ / 0-)

        to what you describe. One is called Gamma Knife, and another is called Cyber Knife. They're in the stereotactic category, so it may have been a variant on those. I believe they have dozens of radioactive sources - a cobalt isotope, IIRC - and control release of the radiation and the position by which source is activated. (I may be way off base here too)

        If you watched ER when Dr Mark Greene (Anthony Edwards) had a brain tumor, in his last season he underwent Gamma Knife treatment. It was the big thing the went over his head.*

        My oncologist thinks those aren't effective for liver cancer, so I haven't read up on them. Of course, she had early experience with one of the first proton beam installations and doesn't think it would be effective for liver cancer - even though some cancer centers have published successful results for using it. She did think it was useful for some other cancers, like prostate though, where the tumors remained smaller.

        *My favorite exchange from ER is below. You don't know how many times I'm tempted to use a variation on this, especially when faced with delays in health care: It's not self-pity, just a wish for a little more urgency on some people's part.

        Dr. Mark Greene: Mrs. Raskin. It's been a long time.
        Mrs. Raskin: The service isn't what it used to be.
        Dr. Mark Greene: What seems to be the matter?
        Mrs. Raskin: I have this hangnail, and it's very painful.
        Dr. Mark Greene: I have a brain tumor, and it's inoperable.
        Mrs. Raskin: What?
        Dr. Mark Greene: I win.

        No matter how cynical you become, it's never enough to keep up - Lily Tomlin

        by badger on Tue May 13, 2014 at 08:55:09 PM PDT

        [ Parent ]

    •  oh, {{{{{badger}}}}} (11+ / 0-)

      This is a great write-up of very complex procedures. You organize and present the information very clearly. I do hope you publish your diary--and selfishly, I hope you would do it on a Monday evening under the MNCC auspices. Any Monday would be open; I can Kosmail you the minimal standard features if you're interested.

      It sounds like these are big, big advances, truly cutting-edge. I hope that one or more work for you quickly and completely.

      Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Tue May 13, 2014 at 06:25:00 AM PDT

      [ Parent ]

      •  We'll have to see (5+ / 0-)

        I had an appointment with an interventional radiologist today, and he was fantastic - knew my case inside and out and has done the procedures lots of times as a resident/fellow for over 6 years. He's been with the local hospital a little over a a year.

        I have a DEB-TACE procedure scheduled for this Thursday, and Monday is around the time-frame the fatigue hits (4-5 days after). However, it's tentatively scheduled, because they didn't request insurance pre-approval, which normally takes a week. I had to call them back to get them to check, They're going to try to get it by Thursday, which I think is unlikely.

        So we'll see. The radiologist has open time, but he has trouble getting an anesthesiologist sometimes (may be short-handed here), so a re-schedule is anybody's guess if they can't get pre-approval.

        No matter how cynical you become, it's never enough to keep up - Lily Tomlin

        by badger on Tue May 13, 2014 at 05:23:59 PM PDT

        [ Parent ]

    •  Y90 ... is that the same as proton therapy? (3+ / 0-)
      Recommended by:
      badger, peregrine kate, Sylv

      I know someone who was 3 months to live and now free pro tem, at Seattle cancer care/Fred Hutchinson
      Y-90 liver cancer-busting treatment: Safe, fast, extends life, study finds

      Interventional radiologists have been the leaders in the use of intra-arterial yttrium-90 radioembolization, since its introduction in 2000, to treat liver cancer. Now, new results from a large multi-institutional study show that treating liver tumors with higher doses of Y-90 than previously tried is safe, provides results when chemotherapies have failed, preserves the patient's quality of life -- and can be done on an outpatient basis.

      •  Y-90 is, as you point out, inter-arterial (2+ / 0-)

        It emits negatively charged beta particles to kill the cancer.

        Proton or proton beam therapy uses a huge, very expensive machine to generate positively charged protons which are directed (like X-rays, but narrow, precision beam and less penetration) at the tumor.

        No matter how cynical you become, it's never enough to keep up - Lily Tomlin

        by badger on Tue May 13, 2014 at 05:17:14 PM PDT

        [ Parent ]

        •  ah-are you thinking of Y90? (2+ / 0-)
          Recommended by:
          badger, ZenTrainer
          •  Saw an interventional radiologist today (4+ / 0-)

            and that was his first choice, by a small margin (mine too). He's done them as a resident/fellow, but the local hospital isn't licensed for the procedure.

            If I went to UW (long story, total fiasco) that might be what they'd recommend.

            Instead, my doctor's (and my) second choice is DEB -TACE, which has about the same overall survival as Y-90, but Y-90 has a little longer "time to progression" - time until the tumor returns or starts re-growing. With the sorafenib, it's probably the best option for me now. Y-90 is also outpatient, DEB-TACE inpatient (one night, usually), and Y-90 has the edge with almost no side effects; DEB-TACE is variable with side effects, but the beads are better than just injecting the chemo directly in solution form.

            There's a good chance one tumor will shrink enough to do radio frequency ablation. The other tumor is much larger, but he may do multiple DEB-TACE treatments if that looks promising. The outcome can vary from tumors gone to some tumor left to no change to keeps on growing, but the odds favor improvement. It's still treatment, not a cure.

            I can always have Y-90 at a later date if the situation changes.

            No matter how cynical you become, it's never enough to keep up - Lily Tomlin

            by badger on Tue May 13, 2014 at 09:06:58 PM PDT

            [ Parent ]

            •  Treatment is OK if you can keep going well. (2+ / 0-)
              Recommended by:
              badger, ZenTrainer

              Many people have had years and years on treatment. Fingers crossed for you. It's good to have options.

              Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

              by peregrine kate on Wed May 14, 2014 at 11:35:19 AM PDT

              [ Parent ]

              •  Was on the phone almost all day (2+ / 0-)
                Recommended by:
                peregrine kate, ZenTrainer

                Drugs are coming tomorrow, UW called to apologize, and my doctor, his medical assistant and the insurance people at the hospital got approval for my DEB-TACE procedure in one day. So the anesthesiologist's nurse called, too, and the surgical nurse, and lots of personal calls.

                I figure if they can get pre-approval in one day, curing cancer would be a breeze.

                The small town local hospital I go to is all private rooms, TV, WiFi, phone, individual climate control, views of the surrounding hills and mountains, and even a hide-a-bed couch for guests to stay over. The menu is a la carte, any time from 7AM to 7PM, and has burgers, French dip, Belgian waffles, Caesar salad and all kinds of good stuff. I was kind of bummed when the nurse called and said it might be out patient. I was already thinking of faking symptoms to get a few more days of R&R.

                But amazingly I'm really happy about this and looking forward to it.

                No matter how cynical you become, it's never enough to keep up - Lily Tomlin

                by badger on Wed May 14, 2014 at 05:31:56 PM PDT

                [ Parent ]

        •  for those in IL or IN (3+ / 0-)
          Recommended by:
          badger, peregrine kate, ZenTrainer

          Fermi Labs is one of the sites providing proton beam radiation, using their otherwise occupied collider.

          Coolest thing I ever saw when visiting there on vacation some years ago. (While I was there, the Top Quark team was analyzing the data that proved the existence of top.

          Referrals, obv, through local oncologists. Probably available at all large-scale colliders of this type, but not really sure.

          •  That's cool (3+ / 0-)
            Recommended by:
            peregrine kate, kfunk937, ZenTrainer

            Major cancer centers/hospitals have their own machines - Univ of Washington, U FL, MD Anderson in Houston, and a few others.

            I visited Fermi about 25 years ago - a really interesting place.

            No matter how cynical you become, it's never enough to keep up - Lily Tomlin

            by badger on Wed May 14, 2014 at 11:02:20 AM PDT

            [ Parent ]

            •  Yeah, Fermi was the best vacation I'd had in (3+ / 0-)
              Recommended by:
              badger, ZenTrainer, peregrine kate

              a long time. I was surprised to find out about the medical side of the labs.

              It was your comment* about the very expensive machines that prompted the reply. Serendipitous use of very expensive equipment (used to explore the quantum universe, rather than our human scale one) that routed a straight line off the main, circular accelerator for humane purposes. IIRC, the cost to patients was mostly absorbed by Fermi, since the set-up was fully funded and operated for unrelated physics. The medicine was just a happy accident. I wondered if this was done elsewhere, like Cern.  

              Side note: when I was there ('92) they were still working on the, now defunct, superconducting supercollider project planned for Texas. There was a magnet production facilty on site for the project - cleanest 'factory' I've ever set foot in. We saw loads of tabletop physics too. We also got to visit some PIs'/student researchers' homes and hung out. Some of the most thoughtful, surprisingly "spiritual," people I've had the pleasure to party with. (:

              *BTW, I was equally impressed (doesn't seem like the best word, but for me, true) with your comments as the commenter who suggested you publish/diary. Not many can present complex material so completely and understandably.

  •  A friend of mine was cured (18+ / 0-)

    or at least now 6 years negative screens from Stage 4 melanoma by one of the first applications of the targeted immune therapy described in the NYT.  His Tcells were turned on to the tumor.  I predict in 5-10 years targeted therapy will be the norm.

    Another friend did her own innovation.  With advanced pancreatic cancer, she had the Whipple surgery done, and then declined chemo and traveled everywhere she had ever wanted to go.  Just had a clean 3 year scan (fingers crossed).

    Democrats give you the Bill of Rights; Republicans sell you a bill of goods!

    by barbwires on Mon May 12, 2014 at 10:42:14 PM PDT

  •  Biological agents and lymphoma (16+ / 0-)

    My wife had Primary Mediastinal Large B-Cell Lymphoma as the treatment was moving from R-CHOP to dose-adjusted EPOCH-R.  The R-CHOP treatment is tough enough, with a once every 21 days chemo session, but DA-EPOCH-R is pretty much a horror. Etoposide, prednisone, vincristine, cyclophosphamide, and hydroxydaunorubicin in combination with rituximab. The dose starts high, and it goes up from there. It's administered through a port, using a pump, over a period of five days. At peak, my wife was getting over eight gallons of material pumped into her every three weeks. I would not have believed it possible. She had to wear a full-sized camping backpack to hold the bags of fluid.

    She also got a shot of neulasta (pegfilgrastim) to bolster her immune system at the end of each cycle, which was notable both for costing a fortune and for causing shrieking bone pains. She also joined a couple if trials, including one for a shingles vaccine for lymphoma patients, because why the hell not.

    Both pegfilgrastim and rituximab are biological agents rather than traditional chemicals.  Pegfilgrastim is an engineered form of human granulocyte colony-stimulating factor, to boost white blood cell production. It cuts down on hospitalizations from infections.

    Rituximab is a monoclonal antibody cobbled together from dissimilar proteins that attaches to a site on B-cells, making it like a targeted chemo agent. Rituximab is the real miracle. It doubles the survival rate of PMBCL.

    In 2000, the 5-yr survival rate for PMBCL was around 40%. For the 94 people in the DA-EPOCH-R test group my wife is in, the rate so far is exactly 100%. Hard to beat that. Now if they can just keep that efficiency and make the treatment less tough on the patient.

  •  I don't have cancer - I've got CFIDS (8+ / 0-)

    In my long years of research on how to cure myself of CFIDS, I've explored many other illnesses, particularly since there is so much symptom and disease overlap in the health-challenged communities. A few of the novel (and I'm not sure I'm using this in the sense you intend, PK) therapies that I found that have potential for treating cancer include high dose proteolytic enzyme therapy (some version of this is practiced by Dr. Gonzales) and low dose naltrexone (LDN). There is also evidence that some cancers are virally caused, and I've read reports of people having success in treating their cancer with intensive natural anti-viral therapies. There are also some very compelling stories about curing cancer with high dose cannabis.

  •  I have been using certain OTC herbal (11+ / 0-)

    remedies, and am going to be getting Vitamin C infusions soon. But hopefully if this originated in the ovary area, then we caught it real early. But that hasn't been determined yet, surgery asked new questions.  

    I have also being doing juice fasts and I try to walk between 3 and 5 miles a day in addition to some other forms of strenuous exercise. I doubt I have lost any "weight" but I have trimmed inches because my pants are baggier.

    Avoiding added sugar. I say that because sugars are naturally occurring in fruits and veggies and form in starchy foods when they are cooked. But mostly I am avoiding HFCS, White Sugar, etc., so stuff like soda pops, candy, cakes, etc.,

    If I got a really bad prognosis or bad enough then I will be moving to a place where MJ is legal so I can add that to my herbal regimen. Can't do it here, the fundies get their undies in a twist over medical marijuana. Every time a cancer patient takes medical marijuana god kills a kitten or something. (snark).

    Lots of hurry up and waiting. Even with insurance this has taken a financial toll on our family. Buying extra supplements has also been an expense. Some insurance companies however, do cover the vitamin C infusions for cancer patients. Mine says it does, so I am going to try it. Expect to pay over 100 dollars per session.

    "It were a thousand times better for the land if all Witches, but especially the blessing Witch, might suffer death." qtd by Ehrenreich & English. For Her Own Good, Two Centuries of Expert's Advice to Women pp 40

    by GreenMother on Tue May 13, 2014 at 05:25:47 AM PDT

    •  Also, I am going to employ Apitherapy (6+ / 0-)

      to boost my immune system later.

      I try not to do all these things at once, but rather do them at different stages.

      I have the bees, so why not. I have always had a good reaction to bee venom. I know people who have used this to treat for MS with excellent results.

      "It were a thousand times better for the land if all Witches, but especially the blessing Witch, might suffer death." qtd by Ehrenreich & English. For Her Own Good, Two Centuries of Expert's Advice to Women pp 40

      by GreenMother on Tue May 13, 2014 at 05:29:56 AM PDT

      [ Parent ]

    •  Years ago I contracted a relative of leprosy (5+ / 0-)

      called mycobacterium marinum. The bacterium is commonly found in fish tanks in very minute quantities. I have had fish tanks for decades with no problems from anything in the tank.

      Since childhood, I had suffered from chronic bronchitis, and the year I contracted the bacterium I had a particularly vicious bout of bronchitis, and my then-doctor prescribed Zithromax, a very powerful, five-day course of antibiotics.

      After cleaning the tanks after the course of the drug treatment, I saw a little red track trace its way up my finger. I didn't think anything of it until pustules began forming up my arm, up to my elbow.

      A trip to the hospital didn't provide answers, so a sample was sent off to the CDC. The diagnosis came back as the bacterium, and I must have contracted it from the fish tanks. My conclusion was that the Zithromax crashed my immune system, making me vulnerable to the tank bacteria in ways I hadn't been before. The pustules were large and painful and on their way to my heart. My then-doctor poo-pooed my diagnosis, but there was no other way I could have contracted the disease.

      The antibiotics prescribed on top of the Zithromax didn't do much, so I sought alternatives. What I came up with was The International Biocare Hospital in Tijuana.

      There I underwent everything from blood irradiation to hyperbaric oxygen and acupuncture. Something worked, because after two weeks at the hospital the wounds had retreated, and my blood was negative for the bacterium.

      While at the hospital, I was put on a careful diet of fresh fruits and vegetables and other light, vegetarian fare. Between the diet and the treatments, what could have been a fatal incident was cleared.

      I'm for truth, no matter who tells it. I'm for justice, no matter who it's for or against. ~ Malcolm X -8.62 -8.36

      by 4Freedom on Tue May 13, 2014 at 10:25:34 AM PDT

      [ Parent ]

      •  It sounds more fungal than bacterial. (3+ / 0-)
        Recommended by:
        newpioneer, 4Freedom, ZenTrainer

        At least from your description. More than likely the Zithromax + Bronchitis crashed your immune system, and made you vulnerable to fungi that might have been in your gut all along. Once that quashes or distracts your immune system, the Bacteria can jump on for the ride adding to your symptoms and even pile driving a body into the ground.

        Good thing you were smart enough to go your own way. Its great when we encounter truly brilliant physicians who employ critical thinking skills. However, when that doesn't happen, you get to be a lot more than your own advocate. Some people suffer a long time, receiving ineffective and even damaging treatments before they figure that out.

        "It were a thousand times better for the land if all Witches, but especially the blessing Witch, might suffer death." qtd by Ehrenreich & English. For Her Own Good, Two Centuries of Expert's Advice to Women pp 40

        by GreenMother on Wed May 14, 2014 at 05:15:30 AM PDT

        [ Parent ]

      •  My goodness! That sounds awful, and terrifying. (0+ / 0-)

        Thank goodness you sought extraordinary treatment, and that it was successful.

        I know of several people who have used hyperbaric oxygen treatment with good results, mostly for wound healing.

        Good to see you, as always. I'm psyched you're going to be at the Motor City Kossacks table! :)

        Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

        by peregrine kate on Wed May 14, 2014 at 07:24:15 PM PDT

        [ Parent ]

    •  {{{{{Green Mother}}}}} (0+ / 0-)

      I am sorry to hear that you are dealing with such potentially serious illness. I hope that all your inquiries turn up good and useful information, and that you have success very soon.

      The out-of-pocket costs for treatments, covered or not by insurance, can be staggering. I wish you luck in coping with that additional burden, too.

      Thanks for stopping by.

      Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Wed May 14, 2014 at 07:22:08 PM PDT

      [ Parent ]

  •  Immune system tinkering (8+ / 0-)

    My mom participated in a clinical trial related to the immune system; the trial focused on lung cancer patients. The super-simplified explanation is that cancer blocks the immune system from removing cancer cells; this therapy re-opens the pathways that cancer blocks. So the immune cells do the work they're supposed to do.

    Worked pretty good, considering that she lasted 6 1/2 years when the original prognosis was 50-50 to survive 10 months. She did complain of itchiness as a side effect.

    Mark Twain: It ain't what you don't know that gets you into trouble. It's what you know for sure that just ain't so.

    by Land of Enchantment on Tue May 13, 2014 at 06:44:13 AM PDT

    •  This sounds similar (6+ / 0-)

      to my herbal treatment for Lyme disease. The Lyme bacteria (Borrelia sp.) is very clever at shutting down your immune system. The past few months I've been going to an excellent herbalist (Trad. Chinese herbal med and Native Amer. med). The custom tinctures he prepares for me are supposed to help my immune system, among other things. The only side effect I get is hot flashes & sweats, which he says are part of the process of reactivating the immune system.

      I have improved tremendously  with the help of this protocol. I also continue my antibiotic treatment--I think the two approaches are complementary.

      I would recommend a good herbalist or TCM practitioner to anyone facing severe illness. If they really know what they are doing, they will approach your problems with a much broader outlook than any individual physicians. Specialists are very useful to a point, but I am always frustrated that they don't look beyond their thing to see the whole.

      LoE--I'm glad your mom got some good years from this experimental treatment. And, thanks to her the therapy researchers may have been able to make this available to others in the future.

      Where in the Constitution does it say: "...on behalf of corporate interests" ???

      by sillia on Tue May 13, 2014 at 08:39:46 AM PDT

      [ Parent ]

    •  I'm glad to hear that your mother gained so much (0+ / 0-)

      time through her treatments. Lung cancer is still a tough one.
      Thanks for stopping by.

      Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Wed May 14, 2014 at 07:25:35 PM PDT

      [ Parent ]

  •  A friend went to Germany years ago (7+ / 0-)

    for a treatment, still not used here, involving chemo and heat, for an aggressive breast cancer. She had been given three to six months by Duke doctors, and the six months was only if she had bone marrow treatment - with the potential side effects of coma, staying in hospital most of the predicted remainder of her life. (I like the doctor I had at Duke but I quite understand her banging her fist on the table and telling them to F*@k themselves.) The reasoning behind the treatment is that tumors need blood to survive, so either the specific area where tumors are located, or as in her case, the whole body, is heated up. The juvenile vessels collapse from the heat, starving the tumors. Chemo is then administered, having greater affect on the tumors. My friend lived almost three more years, marrying her boyfriend and moving to the beach. She told me she'd been waiting 'til she was better but decided get everything she wanted NOW. For residents of Germany, the treatment is scheduled over a longer period of time, with regular dates. Those traveling for it, like my friend, had short intensive treatments, considered not as effective. I just checked online and found it seems to be getting closer to being accepted here. It's been fourteen years since she died; way too long for something that reduced her pain, tumors and gave us more quality time.

    "You must not lose faith in humanity. Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty." Mohandas Gandhi

    by cv lurking gf on Tue May 13, 2014 at 06:47:30 AM PDT

  •  Have you read (5+ / 0-)

    "The China Study?" Eating a plant-based diet gives tumors nothing to grow on, which meat does. That's the simple explanation.  I recommend reading the book or listening to the book on tape.   I changed my diet and feel 100% better.

    People act on the outside how they feel on the inside. If you acknowledge it, you can change it.

    by Raggedy Ann on Tue May 13, 2014 at 06:51:15 AM PDT

    •  And dairy... (3+ / 0-)
      Recommended by:
      ZenTrainer, 4Freedom, newpioneer

      which is liquid meat. The protein in dairy can be used to jumpstart cancers in the laboratory. Prof. Campbell's work is eye-opening.

      We have a friend diagnosed with a bad form of breast cancer. She got regular chemo here, then went out of state to some advanced experimental treatment (involving enzymes or something? not quite sure). Amazingly she has gone into remission, has recovered her health, re-grown her hair, and is now happily back to work in her dream job.

      The doctors at the experimental cancer clinic told her to read the China Study and follow the dietary advice in it. They were quite firm about this! I am not sure to what extent she actually followed this advice, I think she did at least to some extent. What really impressed me was how seriously the doctors took  diet as an important influence in her recovery.

      Where in the Constitution does it say: "...on behalf of corporate interests" ???

      by sillia on Tue May 13, 2014 at 08:46:04 AM PDT

      [ Parent ]

    •  Uhh, wrong and wrong (3+ / 0-)
      Recommended by:
      newpioneer, ZenTrainer, Sylv

      Cancer cells primarily need two nutrients: glucose and glutamine.  Both are quite abundant in both meat and in fruits and vegetables, and if you don't consume enough, your body can just make its own from other raw materials.  I'm glad you feel better from changing your diet, but the premise of the study you're working off of is not correct.

      "Believe nothing, no matter where you read it, or who said it... unless it agrees with your own reason and your own common sense." -The Buddha

      by Brian A on Tue May 13, 2014 at 11:11:26 AM PDT

      [ Parent ]

      •  I don't think it's appropriate (2+ / 0-)
        Recommended by:
        ZenTrainer, newpioneer

        for you to say wrong and wrong.  If you don't believe it, fine, keep your comments to yourself.  Thanks.

        People act on the outside how they feel on the inside. If you acknowledge it, you can change it.

        by Raggedy Ann on Tue May 13, 2014 at 02:04:34 PM PDT

        [ Parent ]

        •  There are certainly nicer ways to tell people (2+ / 0-)
          Recommended by:
          kfunk937, newpioneer

          that you disagree. I know when I am dog training I try to get dog owners to agree with my philosophy and do what I think is best for their dog.

          I like to play with all the ways I can do that without offending them. I think it's harder to do on the internet.

          Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

          by ZenTrainer on Tue May 13, 2014 at 04:12:25 PM PDT

          [ Parent ]

        •  Sorry I hurt your feelings, but people die (4+ / 0-)
          Recommended by:
          Sylv, peregrine kate, kfunk937, newpioneer

          because they think they know better than modern medicine.  Take Steve Jobs, for instance.  He had a very easily treatable form of pancreatic cancer (not the aggressive form you're probably familiar with, but a different kind), but instead, he dicked around with special diets and meditation for 9 months, and his cancer metastasized.  He'd almost certainly still be alive today if he had gotten his cancer treated promptly according to the most recent standards of care.

          Honestly, and this is probably going to offend you even more, the attitude of many towards cancer treatment is not so different from the attitude of the religious right towards evolution.  Ie: science does not have 100% of the answers, therefore science must be wrong.  It's a long process, and we're working on it and creating new and more effective treatments all the time (read some of the posts above yours about targetted T-cell therapy).

          "Believe nothing, no matter where you read it, or who said it... unless it agrees with your own reason and your own common sense." -The Buddha

          by Brian A on Wed May 14, 2014 at 04:55:43 AM PDT

          [ Parent ]

          •  One of the great things about the Monday Night (1+ / 0-)
            Recommended by:
            peregrine kate

            Cancer Club is that we respect everyone's right to choose their own treatments. It's the same at Gilda's Club.

            I think that the difference between us and the religious right is that we don't push our individual beliefs on anyone.

            I know that I was and remain convinced that chemo would have killed me and that the danger of radiation and the hormone therapy outweighed the good they might have done by a long shot. So I bypassed those.

            At Gilda's Club I met a woman in her early 20's who was having a prophylactic double mastectomy because she had the gene for breast cancer and was convinced that she would get it and it would kill her.

            Believing in evolution at least does no harm, unlike many cancer treatments.

            In my opinion everyone needs to do what makes them feel comfortable, cancer is a crap shoot. Steve Jobs was a pretty smart guy and did was he felt comfortable with.

            Good on him. There are no guarantees in life.

            Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

            by ZenTrainer on Wed May 14, 2014 at 06:32:01 PM PDT

            [ Parent ]

      •  The nutritionists at both hospitals I go to talk (4+ / 0-)

        about low glycemic diets. Very similar to a diabetics diet.

        Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

        by ZenTrainer on Tue May 13, 2014 at 04:09:09 PM PDT

        [ Parent ]

  •  Good morning, everyone! (8+ / 0-)

    A little late to the party, but I figured it would be worthwhile to post this link. This week marks five years of continued cancer survival for my son, diagnosed with stage-4 neuroblastoma and dismal survival odds at age 2. Despite all that, he continues to thrive, with a sister who is equally as awesome as he is. I created a GI Joe-themed tribute video for them, and a couple of the original GI Joe voice actors lent their talents for the narration. Check it out, and I hope you like it!

  •  Thank goodness you're all right! (8+ / 0-)

    Tornadoes are never anything to take lightly.  Even an EF0 tornado can be (and many times, has been) fatal if you're caught above ground.

    I've probably a unique perspective on your question, because I'm a molecular biologist and did a stint in an oncology lab.  This is both a blessing and a curse; as a molecular phenomenon I've studied it nearly as closely as the clinical oncologists...but it's all too easy to forget that cancer is not just an "interesting molecular phenomenon" but a immensely tragic and often horrifying disease.  If I had my way, cancer would never been seen outside of a plastic flask.

    The problem with treating cancer is that it's literally a different disease in every single person that is unlucky enough to get it.  There are certain common factors - all late-stage cancer has found a way to avoid or disable the immune system, for example - but when it comes to targeting, we're still using the biological equivalent of nuclear weapons (i.e. chemo or area-radiation treatment) in many cases.

    So I do think that molecular targeting - looking at each person's cancer, figuring out what abnormal cell surface markers it is presenting, and "training" T-cells or antibodies to go after it in particular - is the best way to attack it.  The problem is twofold:

    1) It's getting harder and harder to fund basic research in this country.  Republicans think that ANY scientific research is a luxury we can do without so more money can be shoveled to billionaires.  This is very new: even in the Bush years, medical research was heavily invested in.  Now it's being slashed and burned at a rate not seen since the Depression.  There's a reason that I, a Ph.D. in the molecular science, is now on Medicaid and food stamps, and that reason has a "R" next to its name.

    2) If somehow it does get invented, private money will almost certainly fund it, which means it will join the ranks of other medical treatments that are essentially lethal rent-seeking: pay for this or die.  Our screwed-up health system guarantees that even if we invent it, it will be unavailable to the vast majority of us.  But single-payer is no panacea either; SP plans tend to be slow to adopt cutting-edge, super-expensive and unconventional treatments.  "Who pays?" will be a very hard question.

    That's enough out of my beak.  If you want to know more, I'd be happy to write a diary on the subject sometime. :-)

    •  That would be a fascinating diary, ArchTeryx. (5+ / 0-)

      There's not much to read coming from your perspective that someone not trained in your field can access.

      I'm for truth, no matter who tells it. I'm for justice, no matter who it's for or against. ~ Malcolm X -8.62 -8.36

      by 4Freedom on Tue May 13, 2014 at 10:12:56 AM PDT

      [ Parent ]

    •  Please do write a diary for us here on a Monday (4+ / 0-)

      Night. Just send a Kos mail to Kate or I.

      I love this part:

      but when it comes to targeting, we're still using the biological equivalent of nuclear weapons (i.e. chemo or area-radiation treatment) in many cases.

      Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

      by ZenTrainer on Tue May 13, 2014 at 04:15:21 PM PDT

      [ Parent ]

    •  Hey, good to hear from you! (2+ / 0-)
      Recommended by:
      ZenTrainer, ArchTeryx

      How are things in NY?

      I would love to have a diary from you in the MNCC series, if you're willing. Either or both of those topics--along with the outlines of the basic science involved--would be great.

      I do grasp, I think, this observation:

      The problem with treating cancer is that it's literally a different disease in every single person that is unlucky enough to get it.

      Pretty amazing concept, really.

      Thanks for stopping by. I hope to hear more from you soon. ;)

      Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Wed May 14, 2014 at 12:20:36 PM PDT

      [ Parent ]

      •  Things are much better in NY then MI. (1+ / 0-)
        Recommended by:
        peregrine kate

        I've been quite active in the community; three different meetup groups all within half an hour of me, and I've gotten a lot of good networking done here in Albany.  Scientific research is rather peaked here thanks to Cuomo's endless budget cuts, but at least it isn't a monopoly like UM was...far more diversity.

        I've gotten some Boston people turning up their nose at me and asking, "Why would you want to live in Albany?" and my answer is very simple: "Because it isn't rural Michigan."  That shuts 'em up right quick, let me tell you.

  •  I have Borreliosis and co-infections, (5+ / 0-)

    Babesia ducanii (WA-1), and Bartonella. otherwise known in the US as Lyme disease.

    Also opotunistic high EBV (Mono), Herpes Zoster ( Shingles), Herpes I and II among other things.

    additionally last fall via neurologist and biopsies, diagnosed with Progressive Idiopathic Progressive Polyneuropathy. The NIH is clear that "Lyme"(sic) and the soupçon of biocides on top of it all, has wreaked havoc with my immune system. It is both over and under active. But most egregiously has lead to high intolerance to my environment, petrochemicals like biocides. But worse for me I cannot take any vitamins, minerals, supplements, antimicrobials to bring down the fundamental infections causing the problems.

    First I do have one option, which we immediately got to: mild Hyperbaric Oxygen with a home based clinical chamber, via a prescription from my doctor. It's all I have for now and I am slowly increasing my exposure time to 97% oxygen under 1.3 Atmospheres/4psi. I have gone from a half hour every four days to a half hour every other day. It has some of the same results as taking antibiotics: more pain, fatigue, sleep after treatments. I can only take so much as it does kill oxygen sensitive spirochetes, which increases inflammation as the system tries to clear them.

    mHBO does help with inflammation, regulate the immune system and yes help the body directly and indirectly kill the infection.

    Secondly, I have just been approved for a year of IViG which is a blood product of immunoglobulin. Over time the immune system will help regenerate nerves and resheath the myelin lost to the Poly neuropathy. The concern up to now is that I might reject this therapy as well. But the infections and the Polyneuropathy are outrunning me, so this is my chance.

    We start with six days of IV dosing, then once every three weeks for two day.

    Amy Tan, the writer of "Joy Luck Club" and many other novels has my same profile, most importantly, Lyme. She was bedbound, hallucinating and towards the end couldn't write at all and didn't recognize her husband. Given IViG, she was able to take meds and has go on to write more novels and travels. So I have hope.

    I have to have as little stress, as strong a system as I can achieve before starting so I can improve my chances of   being able to use this infusion.

    May is Lyme Disease Awareness Month.

    Science is hell bent on consensus. Dr. Michael Crichton said “Let’s be clear: The work of science has nothing to do with consensus... which is the business of politics. Science, on the contrary, requires only one investigator who happens to be right,”

    by Regina in a Sears Kit House on Tue May 13, 2014 at 10:18:20 AM PDT

  •  One of my saddest failures. (5+ / 0-)

    I was working on a stable radioiodine labeled estrogen which would bind to estrogen-sensitive cancer cells.  There were a lot of issues to resolve such as stereochemical hindrance, receptor and iodine binding strength and form of estrogen.  But the resources were thought to be worth the risk as such a compound would allow knocking out disseminated cells.  A good adjunct to other therapies.

    I finally had a real good candidate, the radiolabeling was pretty straightforward and in-vitro results were very encouraging.  When injected into test animals we found that the radioiodine was stripped off by the liver, and so a lot of work just became useless.

    And, this was when I was working for a small company, so the expenditure of approximately $300,000 in resources for this was significant.

  •  If had millions to put to cure my type (6+ / 0-)

    of cancer (thyroid), it might be to fund the abolition of nuclear weapons and nuclear power -- for prevention's sake, since radiation and especially the radionuclide iodine-131 are our main known risk factors. Side benefit: no nuclear armed regimes or terror groups; no Fukushimas, no Chernobyls, no Yucca Mountain Nevada nuclear waste storage facilities, etc.  

  •  To diarist, peregrine kate (4+ / 0-)

    You asked what the most interesting thing is going on in cancer research. The answer is Jim Allison, who is now at MD Anderson Hospital in Houston.

    These three articles explain why. The New Yorker one is the longest but it does put into context what Allison has achieved. Motivated by the fact that close members of his family died of cancer, he's devoted his life to coming up with answers. In 1995, he found some very interesting answers, having to do with tapping into the immune system. This line of thinking was deeply unpopular among researchers, doctors, and those who fund cancer research until Allison proved them wrong. I think he will eventually win a Nobel Prize for this work.

    Can the body’s immune response help treat cancer?
    by Jerome Groopman
    APRIL 23, 2012
    Allison, who made the discovery while a researcher at UC Berkeley, moved to Sloan Kettering in NYC but he didn't like NY. MD Anderson recruited him and, since he grew up in Texas, he went back home.

    If I had cancer, I'd make a beeline for his lab.

    This describes his time at Sloan Kettering
    and this catches up with him in Houston where he played a gig, one time years ago, with Willie Nelson.
    very smart man who is pointing the way toward treating cancer without poison.

  •  Tamoxifen is given as an agonist to (4+ / 0-)

    block the receptor for estrogen in breast cancer patients to reduce the influence of estrogen on estrogen-related breast cancers.

    Any chance that Tamoxifen would be active as an anti-estrogen agonist in other tissues, including tumors genetically linked to estrogen from endometriosis?

    •  Oddly enough, tamoxifen is considered (2+ / 0-)
      Recommended by:
      LakeSuperior, ZenTrainer

      a carcinogen with respect to endometrial cancer. For some reason, the body metabolizes it differently with respect to different organs--and I am far from able to explain why. But it's a known risk factor for women who take tamoxifen for BC.

      Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Wed May 14, 2014 at 11:43:04 AM PDT

      [ Parent ]

    •  I just saw an excellent review article describing (2+ / 0-)
      Recommended by:
      ZenTrainer, peregrine kate

      +/- current treatments for endometrial cancers: Treatment for Advanced and Recurrent Endometrial Carcinoma: Combined Modalities,
      J. Alejandro Rauh-Hain and Marcela G. del Carmen, Oncology, 2010) w full text at

      In it, traditional, multimodal and targeted therapies are covered in an overview sense, based on recent clinical trials including retrospective & prospective studies; the article is organised clearly, and distinguishes between different disease stages, recurrent disease, and hormone receptor status, among other things. Although it's a CME article, I found it fairly straightforward. The citations are extensive and linked from the article, although PubMed may limit access to abstracts for many readers.

      Tamoxifen is mentioned in multi-modal therapy (primarily as an adjuvant to chemo, as well as alone. In the latter case, response was poor) later in the paper. Studies on targeted therapies are covered, all too briefly, near the end.

      When I was in med research some years ago, I relied on as one source for updates on current and recent clinical trials. I'd recommend it to anyone who might be interested in investigating more research, especially if possibly interested in enrolling.

      To the diarist and commenters: this is my first visit to MNCC.  I commend your excellent work. I'm not dealing personally with cancer, but am a caregiver for someone who is.

      I'm grateful to have "stumbled upon" your space, seen in the Community listing from the Front Page. I had to jump in and out several times while waiting in my dad's oncologist's office, then the lab, then...etc., but it seemed fateful, given the direction of my thoughts for the day.  I saw a supportive group of very well informed folks. Sharing and caring.

      I hope I've not intruded, and hope to return. I know I'll learn a lot. Until then, I send all my best wishes for good outcomes, whatever that may entail for each of you, according to your needs.

      Thank you.


      •  You are not intruding at all. I'm so glad you (2+ / 0-)
        Recommended by:
        peregrine kate, kfunk937

        found us. This is a group for caregivers as well. I often think you guys are doing the hard part. I look forward to seeing more of you and best wishes for your dad.

        Tracy B Ann - technically that is my signature. If I had Bill Gates money, I'd buy Detroit.

        by ZenTrainer on Wed May 14, 2014 at 06:40:59 PM PDT

        [ Parent ]

        •  Many thanks ZenTrainer for the best wishes (2+ / 0-)
          Recommended by:
          peregrine kate, ZenTrainer

          for my dad, and from Peregrine Kate, too.  He smiled!, even though having a poopy day.

          This morning we're sitting in his family room with Faux Spews, on loud. Per normal. Turns out he's heard of Daily Kos. Not sure he knew I was here, before this, but since I'm a proud pinko he calls "flaming" . . . so while we wait to see if today will involve another ED visit or ~shudder~ his 9th hospital admission in less than 6 months, maybe some librul waves will waft across the room to him.  (<:

          Cheers to community. Jeers to cancer.

          Love and light.

      •  You're welcome. Thanks for supplying this link. (1+ / 0-)
        Recommended by:

        The information you provide demonstrates just how complex the whole field is, since as you note in some trials tamoxifen has indeed been used with megestrol. (Shows what I know.)

        I'm not sure how I missed this particular article; for several months I was reading every single thing I could find about treatment for Stage III endo ca. But eventually I became frustrated when I realized, having read it in several different places, that there was no standard of care for my particular cancer. As these authors note in their conclusion,

        The best regimen is still unknown....
        I'm sure it's related to the problem of the condition being so truly idiosyncratic, woman to woman. But I stopped reading the medical lit, once my treatment did work and I exceeded expectations.

        I'm not trying to give you a hard time for posting it, please don't misconstrue my response. I'm merely expressing my historical sense of discouragement from reading about the poor prognoses for most women with my set of circumstances. I will bookmark CenterWatch for future reference (not for me personally, I fervently hope).

        I appreciate you stopping by, and I hope you will appear regularly. One of us will soon send you an invitation to join the group, though it's not necessary to do so to read, comment, or submit a diary for publication through us. Best of luck to your father and you.

        Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

        by peregrine kate on Wed May 14, 2014 at 07:42:47 PM PDT

        [ Parent ]

        •  I agree totally. It can be sobering, and scary (1+ / 0-)
          Recommended by:
          peregrine kate

          to find fairly-up-to-date conclusions reading

          The best regimen is still unknown....
          In many ways, I think that such reviews are obligated to be non-committal, though. I wish I'd had something more constructive to add, but appreciated this piece for the decent overview it gave, keeping in mind that it was concentrating on later stages (3-4).

          Thank you for the welcome, and I'll keep my eyes peeled for the invite. Thanks for all you do. Collectively.

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