Sloan-Kettering Sucks

I contacted Sloan-Kettering and they are not interested in this case because they do not classify it as cancer. They would be happy to see me for a 3000 USD consultation, though that would be with a general surgeon, not an oncologist. ?!?!

LPD after hormonal ablation

There are cases of LPD occuring after hysterectomy, after oophorectomy. To my mind that would indicate that hormonal ablation, while logically the first line of defense, is not the cure and the cause needs to be looked into more carefully. Sorry to those women. Who will look into the cause?

Juicing?

LPD is sometimes thought of as cancer and sometimes like a uterine fibroid. Here is something that suggests cancer and fribroids should not be treated the same. So what should someone with LPD do? Follow the cancer theory or the fibroid theory?

"http://www.healingcancernaturally.com/gerson1.html

Q. Can fibroid tumors be dissolved in the same manner?
A. Fibroid tumors are mostly benign. Benign tumors take 10 to 20 times as much time to absorb as malignant tumors. This goes for adhesions and scars. Fibroid and benign tumors are dissolved only very slowly because they are not abnormal. It is difficult for the parenteral system to bring its digestive powers to bear on these benign tumors. But when they turn malignant, then they are quickly dissolved."

Frankensense Oil?

Here is something I bumped into:

http://www.namiscc.org/Recovery/2003/Spring/OilsForRecovery.htm

Cancerous growths and tumors, including fibroids, are far too common with antidepressant use. I believe it is a good idea to use frankincense oil as a protection against that possibility after being on antidepressants. I have seen massive amounts of hard lumps under the arms disappear within weeks using frankensense oil. ...

Herbs For Fibrous Masses

An excerpt from an article titled, "Abdominal Adhesions: Prevention and Treatment" located at
http://www.itmonline.org/arts/adhesions.htm

...The herbs from the table above are ingredients in traditional and modern formulas used in resolving problems that are relevant to fibrous masses and adhesions.

For example, a traditional formula for treating pain due to old trauma, which may reflect existence of adhesions, is Sanleng Heshang Tang (12). It is comprised of 12 herbs for regulating circulation of qi and blood and alleviating pain; the formula includes sparganium, zedoaria, myrrh, frankincense, and tang-kuei.

A formula for "movable or immovable mass in the abdomen," Huoluo Xiaoling Dan, is made with just four herbs: salvia, myrrh, frankincense, and tang-kuei.

A modern formula developed for treating uterine fibroids, Gong Zheng Tang, includes sparganium, zedoaria, achyranthes, tang-kuei, and persica (13). ...

Classical Acupuncturist Opinion

This is what my friend's acupuncturist said...

"Because this condition affect smooth muscle tissue and because it features nodules, in Chinese medicine it would be seen as a "wei qi" or protective qi disorder where wei qi is moving yin (substance) to the interior because the exterior is incapable of generating a sweat or the lymph system is incapable of clearing phlegm.
The diet would be to build yin so that the body could release the pathologically held yin (substance). Yin promoters are: non-glutinous grains, soups, water. Yin DEPLETERS which should be struck from the diet completely are: coffee, chocolate, garlic, onion, hot spices, sodas, all carbonated beverages, pop corn, fried food.
It's impossible to formulate a plan without making an exact diagnosis from the tongue and pulses."

GnRH agonist caused (not cured) LPD!

Changgeng Yi Xue Za Zhi. 1996 Dec;19(4):352-7.
Related Articles,
Links
Leiomyomatosis peritonealis disseminata (LPD) with acute ascites induced by gonadotropin-releasing hormone (GnRH) agonist: a case report।



CW, ChangChien CC, Lin JW, Hsu TY, Chang SY।Department of Obstetrics & Gynecology, Chang Gung Memorial Hospital, Kaohsiung, Taiwan, R।O।C।Leiomyomatosis peritonealis disseminata (LPD) is a rare disorder characterized by the development of numerous leiomyomata throughout the peritoneal cavity। We present a case of a 29-year-old woman who had LPD with acute ascites induced by a GnRH agonist (Supremon; buserelin acetate nasal solution 400 micrograms/per day).

Evaluating Alternative Treatments

I'm getting over it - that they published my case without telling me. Since it is a radiology journal, it is probably all about diagnosing the images anyway. That's all just speculation on my part. I haven't read the report yet.

I was looking into how to include a google newsfeed on this blog, but I couldn't choose a search word that wasn't too specific or too general.

In the meantime, I found a Dr.'s blog that wasn't arrogant. One of the problems with quackwatch is that it's so anti, that it alienates those it hopes to convince (maybe just me) so in the end it is just preaching to the choir. This article (http://members.bordernet.com.au/~pmoran/cancer/Showing_it_Works_3.htm) has a nicer tone while making the same points.

What didn't work for me, might for others

Now, I’ll start chronologically to detail what I’ve tried. Back in 2001, a friend with uterine fibroids suggested I try her wonderful holistic female gynecologist. I did. She was expensive and prescribed expensive little sugar balls. I wasn’t convinced, but I thought I’d give it a try. It didn’t work – maybe I didn’t give it enough time, maybe I was already too far gone. Maybe the same treatment has worked and will work for others.

At the same time I thought I’d attack the mental connection and go to a psychologist. I didn’t know where to start, but someone told me about how an annoying and bossy friend of hers had changed after years of therapy. So I went to see that therapist. She was annoying and bossy!

Yoga. How frustrating. Stick your left toe in your right ear and balance on your left elbow for 10 minutes and relax! Ha! What a joke. My friend would come out so happy and I would be ready to kill after a class. They would tell you to do stupid things like breath with your left lung. Great. My life is hard enough trying to get things done and here is just another thing that I can’t do.

At the same time I was on decapeptyl which in addition to terrible physical side effects (some of which I still have), made me ferocious. I don’t remember if I realized it was the drug or not, but like PMS or any raging emotion, it’s real when you’re in it and I felt damn justified. One of the things I did in my constant state of righteous indignation was to cross the street when the lights said to. Here, cars don’t stop until after the light turns red and one car has jumped it and they go before it turns green so I was really challenging them to hit me. Especially when I crossed those 4 lane streets slowly and all the drivers could see the green walking man sign blinking to hurry me up. Oh - they would be revving their engines and I could see that their light was still red so I would just stroll on daring them to hit me.

Then the abdominal myomectomy and the slow recovery. I still thought a psychologist could help me and found an English Gestalt therapist. A bohemian friend of mine said it was like talking to a wise older sister and I thought that it being in English, I could cut to the chase. I went there during my lunch hour and found it really grating to sit on the floor in my work clothes with my shoes off and imagine my body without my head. That lasted four sessions.

Mind/Body Connection

My first brush with medical problems, the giant 2001 uterine fibroid, got me investigating alternative therapies and mental connections. I was in pain all the time and was running around desperately looking for answers, yet I couldn’t accept the answers I got. Perhaps my problem was (still is) that I just can’t believe in much more than gravity.

One of the things I think that seems to be wrong with the world, is the idea that “if it works for me, it’ll work for you”. This idea negates our individuality and while it may be a good rule of thumb, it just doesn’t work all the time. We can see this idea manifest when we say, “if that bird-brain can do it, so can I!” or “I’m no genius and did this, so you can too!”. I have a big problem with the idea of role modeling. We shouldn’t live our lives to be an example to others, but be happy with who we are. Likewise, we shouldn’t live our lives following the example of others, but should find our own way.

Even in scientific studies, when treatment x works for, I don’t know – maybe 90% of those studied, it eventually gets put into standard procedure and looked upon as THE cure. What about that 10% for whom it didn’t work? Sometimes there are obvious reasons, but sometimes not.

What I am trying to say here, being of that mysterious non-receptive percentage, is that I am not off the hook: I (me, myself) must keep searching, trial and error, upturning stone after stone and then going back and checking again for what works for me. To complicate matters more, what works at one day, may not work the next and in addition some things may need time to start working and others maybe should just be thrown out right away. How can we tell the difference? There is no savior and the experiences of others are simply their experiences – not predictions of how things will work for me or you.

Decapeptyl 3,75mg

Earlier I mentioned Decopaptyl. It's Decapeptyl. Triptorelina. On the paper that comes in the box it says, "NO SE ACONSEJA UN SEGUNDO TRATAMIENTO CON DECAPEPTY O CON OTRO ANALOGO DE LA LHRH."

That means only one treatment per lifetime for any GnRH Agonist.

I said no to hormone therapy. I wonder if I was right?

About a month ago I met with a gynecologist to talk about the results from the Oct. scan. It’s bad enough that it took them 4 months to find the time to talk to me about the results, but it’s worse that the girl seemed to have read my chart 2 seconds before I walked in the door. Worse yet she recommended something I think would have been detrimental: “tratamiento hormonal” until I reach menopausal age (I’m 38 now). This would consist of Decopeptyl to chemically induce menopause and then later add-back hormones. She was all ready to just give me one simple injection right away to just erase all my hormones.

I’ve already taken that once, and it says right on the paper that comes with it that it should not be taken for more than 5 months and only once in a life time. Of course at the time, as I was sitting in the office, I didn’t remember to tell her that. What I did tell her was that I’d already taken it and had a rough time. That nobody cared about the rough time I was having – in 2001 somebody actually told me that I was not suffering but just uncomfortable. That later I was given progesterone and had an even worse time with that. That the depo-progevera caused the abdominal tumors (I know there is no proof of cause and effect). So I’ve lost confidence in not so much the treatment, but in its administration.

Why should somebody like me who weighs 45kg get the same dosage as somebody who weighs double? Who would monitor the side effects, how often, and how fast would they be able to counteract them?

What could she say to make me feel confident that they were really doing their best to take care of me? Nothing. Her idea of giving me information was just to say that with add-back it’s not so bad and that if she were in my place she would do it. She kept going on and on about endometriosis and how lucky I am not to have that, because that IS painful. In the end I just wound up crying like a baby right there in the office. Feeling so impotent and powerless. You go there scared, weak, confused looking for help, for information, but then have to defend yourself tooth and nail.

Anyway, in the end I didn’t take it and told her that I might be convinced with more information. Her idea of more information was to hand write a prescription for decopeptyl that I could get at the pharmacy or through my regular doctor if I wanted it for free. So I’ve been looking for more information and I am just more convinced that I did the right thing. Maybe I will find something new that will change my mind, but I haven’t found it yet and the hospital sure isn’t helping.

Here is some of the information I found about GnRh agonists, confirming that it shouldn’t be taken long-term.
http://www.greenjournal.org/cgi/reprint/99/5/709.pdf
“Prolonged GnRH Agonist and Add-Back Therapy for Symptomatic Endometriosis: Long-term Follow-up” 2002.

But now, I am not even sure if decopeptyl is a gnrh agonist or something else.

Still, if it is a choice between operation or injections, I would take the operation. The operation is not so systemic and really really rough. It took me about a year to recover from the last one. But the injections gave me side effects that may not go away ever. Maybe I will be the first one in history to discover yet another horrible side effect. No thanks.

Tomorrow I can pick up the MRI results from the digestive doctor to take to the tumor doctor on Wed. She said that it didn’t look like there were any signs of malignancy. If there are, then my whole world will crash.


Hace un mes vi un ginecólogo para hablar de los resultados de la exploración de oct.. Es bastante malo que les tardo 4 meses para encontrar un momento para hablar con mí sobre los resultados, pero es peor que la muchacha se parecía haber leído mi historia solo 2 segundos antes de que entré en la puerta. Peor que todo, ella recomendó algo que pienso sera perjudicial: "tratamiento hormonal" hasta que alcanzo la edad de menopausia (ahora tengo 38). Esto consistiría en Decopeptyl para inducir menopausia y después reponen hormonas, se llama “add-back”. Ella era lista para darme una inyección enseguida para borrar todas mis hormonas. Ya he tomado eso una vez, y dice en el papel que viene con él, que no debe ser tomada por más de 5 meses y solamente una vez en la vida.

Por supuesto en ese momento, en la oficina, no se me ocurrió decirle eso. Lo que le dije era que lo había tomado, y lo pase mal. Que nadie se importaba - en 2001 alguien de hecho me dijo que no sufriera sino que estaba incómodo. Que me dieron la progesterona y lo pase incluso peor con eso. Encima el depo-progevera causó los tumores abdominales (sé que no hay prueba de causa y efecto). He perdido confianza no tanto en el tratamiento, pero en su administración.

¿Por qué debe alguien como yo que pese 45kg tomar la misma dosificación que alguien que pesa el doble? ¿Quién supervisaría los efectos secundarios, con que frecuencia, y cuanto tardaran en contrariarlos? ¿Qué podría ella decirme para darme la sensación que realmente hacían su mejor para cuidarme? Nada. Su idea de darme información era simplemente decir que eso con el “add-back” no es tan malo y si ella estuviera en mi lugar que ella lo haría. Hablaba mucho de endometriosis y el suerte que tengo de no tener eso, porque eso ES dolorosa. Al final acabe llorando como un bebé allí en la oficina. Sientes tan impotente. Vas allí asustada, débil, y confusa, en busca de ayuda, de información, pero tienes que defenderse.

De todas formas, al final no lo tomé y le dicho que puede ser que me convencen con más información. Su idea de más información era darme una receta para el decopeptyl que podría conseguir en una farmacia o a través de mi doctor regular si lo quiero gratis.

Así que estoy buscando más información y estoy aun mas convencido de que hice la cosa correcta para mi. Quizá encontraré algo nuevo que cambiará mi idea, pero no la he encontrado todavía y el hospital no está ayudando con información.

Aquí está algo de la información que encontré (en ingles) sobre los agonistas de GnRh.
Pero ahora, no soy incluso seguro si el decopeptyl es un agonista gnrh.

No obstante, si tengo que elegir entre una operación o inyecciones, tomaría la operación. La operación no es tan sistémica y es realmente duro. Me tarde un año para recuperarse del último. Pero las inyecciones me dieron efectos secundarios que quizás tendrán para siempre. Quizás yo será la primera persona en la historia para descubrir otro efecto secundario horrible. No gracias. Puedo recoger mañana los resultados del MRI del doctor digestivo para llevar al doctor de los tumores miércoles. Ella me dijo que no tenían un aspecto maligno. Si tienen, entonces mi mundo entero se estrellará.

What is LPD?

"Leiomyomatosis peritonealis disseminata (LPD), also known as diffuse peritoneal leiomyomatosis, is a rare disease in which multiple smooth muscle or smooth muscle-like nodules develop subperitoneally in any part of the abdominal cavity. These nodules, though histologically benign, cannot be distinguished macroscopically from peritoneal carcinomatosis.

The aetiology is thought to be smooth muscle metaplasia of the subperitoneal mesenchyme. About 100 documented cases were found in the English language literature; LPD patients are mainly females of reproductive age, and only rarely have cases affecting men been reported. The condition is associated with high levels of exogenous and endogenous female gonadal steroids (e.g. pregnancy, prolonged exposure to oral contraceptives and/or combined hormonal replacement therapy, granulomatous cell tumours of the ovary), indicating that oestrogens and progestins play an important role in the pathogenesis of LPD as they do in leiomyomata uteri. Most LPD cases are clinically benign, and in some instances the lesions may partially or completely regress . Alternatively, LPD may progress, recur or (rarely) undergo malignant transformation [8]."
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1481579

"Leiomiomatosis Peritoneal Diseminada
La LPD es una enfermedad benigna e infrecuente caracterizada por el desarrollo de múltiples leiomiomas en la cavidad peritoneal. Aparece en mujeres en edad fértil, asociándose con frecuencia a miomas uterinos y/o estados de hiperactividad hormonal (embarazo, anticonceptivos orales, tumores ováricos, etc.); más raramente se ha descrito en mujeres posmenopáusicas no sometidas a terapia hormonal, considerándose esta situación por algunos autores como un diagnóstico tardío de la enfermedad, donde previamente aconteció una situación de hiperestímulo hormonal.

Aunque su etiología es desconocida, hay una clara dependencia hormonal en el desarrollo de esta enfermedad, como lo demuestran las características de la población afectada y la presencia de receptores hormonales en estos tumores. Algunos autores afirman que el origen de los leiomiomas en esta enfermedad se debe a la metaplasia de células multipotenciales con diferenciación miofibrosa del epitelio mülleriano, distribuido durante la embriogénesis en el mesénquima subperitoneal, y que tanto la predisposición individual como el hiperestímulo hormonal serían los factores determinantes de la tumorogénesis.

Las pacientes suelen estar asintomáticas hasta el momento en que se palpa una masa abdominal o aparecen síntomas derivados de la compresión tumoral de órganos de vecindad.

Ante el escaso número de casos y la poca experiencia acumulada, el tratamiento en la bibliografía revisada es muy variable. Hay actitudes muy conservadoras basadas en un seguimiento clinicorradiológico, dada la benignidad del proceso, contrastada por un seguimiento a largo plazo (2, 3 y 10 años) de pacientes en los que no se evidenció degeneración maligna. Por otro lado, otros autores proponen una cirugía radical (histerectomía con doble anexectomía y extirpación de todas las tumoraciones) con el fin de evitar todo influjo hormonal, así como la posibilidad de degeneración maligna, que según diversos estudio varía entre un 3 y un 5%. En nuestro caso optamos por una cirugía radical, debido a la edad de la paciente y la existencia de una dependencia hormonal en el desarrollo de la enfermedad.

Otros autores indican una cirugía radical en mujeres fértiles que no deseen tener más hijos, en mujeres posmenopáusicas y ante la sospecha de progresión o malignización de la enfermedad, intentando resecar el mayor número de tumoraciones. En caso de tumores residuales, puede ser útil un tratamiento hormonal adyuvante mediante acetato de megestrol. En niñas y en mujeres jóvenes sin hijos puede realizarse un seguimiento clinicorradiológico sistemático, no recomendándose el embarazo ni el uso de anticonceptivos orales.
http://db.doyma.es/cgi-bin/wdbcgi.exe/doyma/mrevista.fulltext?pident=13015252

LPD Treatments

1. Chop them out. They could come back again in the same place or other places. This operation is no walk in the park.
2. Hormone therapy: Remove the source of estrogen with a gnrh agonist such as Decopeptyl combined (or not) with add-back hormones. Heavy-duty as well as new undocumented secondary effects are possible. There are cases of people getting these tumors after hysterectomies and after menopause, so just cutting off the source of the estrogen does not seem to be a definitive solution.
3. No treatment. They are benign after all, but if they are squishing other organs, they compromise the functioning of the entire organism, that’s why they were detected in the first place. Also they sometimes (rarely) transform into cancer.
4. Embolis(z)ation (cut off the feeding vein). This is actually for Uterine Fibroids and I don't think it is an option for LPD. Although it seems to have gone beyond the experimental stage, it is not standard proceedure in this socialized health system so I haven't investigated it very much.
5. Alternative (Holistic, Homeopathy, Herbs, Juicing etc.): No guarantees. If it all worked for everybody all the time, then conventional medicine would never have emerged. See "quackwatch"and the book by reporter-patient John Diamond “Snake Oil And Other Preoccupations”. If it does no harm and conventional medicine has little else to offer, why not? Just watch the pockets. Look for lists of estrogen inhibiting foods and keep away from PABA sunscreens and eating off plastics, try to exercise more, eat salads etc.

Tratamientos
1.Cirugía. Pueden reaparecer en el mismo lugar u otros lugares.
2. Terapia hormonal. Puede ser difícil y nuevos efectos secundarios indocumentados sea posible. Hay casos en que reaparecen estos tumores después de histerectomías y después de menopausia, así que cortar la fuente de estrógeno no se parece ser una solución definitiva para todos.
3. Ningún tratamiento. Son benignas, pero si están aplastando otros órganos, comprometen el funcionamiento del organismo entero, es por eso que fueron detectados en el primer lugar.
4. Embolis(z)ation (cortar la vena de alimentación). Todavía experimental.
5. Tratamientas Alternativas (Holístico, Homeopatía, Hierbas etc.): Ningunas garantías. Si funcionara todo para todos, entonces la medicina convencional nunca habría emergido. Mira a www.quackwatch.com y el libro de John Diamond el reportero-paciente " Snake Oil And Other Preoccupations (aceite de serpientes y otras preocupaciones?)". ¿Si no hace ningún daño y la medicina convencional tiene poco a ofrecer, por qué no? Vigilar el dinero que gastas. La seguridad social aquí es convencional y es gratis. Tengo listas de los alimentos que inhiben estrógenos y no uso sunscreens con PABA y no como de recipientes plásticos, intento ir mas al gimnasio etc..