Comments on: Living with Multiple Endocrine Neoplasia http://hagemanfoundation.org/living-with-multiple-endocrine-neoplasia Thu, 09 Sep 2010 02:34:13 -0700 http://wordpress.org/?v=2.9.2 hourly 1 By: corny http://hagemanfoundation.org/living-with-multiple-endocrine-neoplasia/comment-page-1#comment-434 corny Sun, 15 Aug 2010 18:51:43 +0000 http://hagemanfoundation.org/?p=128#comment-434 <a href="http://diabettreatment.net" rel="nofollow"><b>Insulin</b></a>, a protein hormone produced before the pancreas and it regulates <b><a href="http://diabetsinfo.com/" rel="nofollow">blood sugar</a></b> (glucose) in blood. Insulin is used for treatment of diabetes. The hormone is synthesized in the beta cells, which stick into in hormone-secreting cells of the pancreas and is called islets of Langerhans. The hormone is synthesized in the beta cells, which enter in hormone-secreting cells of the pancreas and is called islets of Langerhans. The tete-…-tete “insulin” is from the Latin insula – island, it indicates on the key origin of the hormone. Insulin, a protein hormone produced before the pancreas and it
regulates blood sugar (glucose) in blood. Insulin is used for treatment of diabetes.
The hormone is synthesized in the beta cells, which stick into in hormone-secreting cells of the pancreas
and is called islets of Langerhans. The hormone is synthesized in the beta cells, which enter in
hormone-secreting cells of the pancreas and is called islets of Langerhans. The tete-…-tete “insulin” is from
the Latin insula – island, it indicates on the key origin of the hormone.

]]> By: Vi Baggs http://hagemanfoundation.org/living-with-multiple-endocrine-neoplasia/comment-page-1#comment-339 Vi Baggs Thu, 29 Jul 2010 20:18:09 +0000 http://hagemanfoundation.org/?p=128#comment-339 Hi JWP, Having children is a very personal decision. Do you know what codon you are? There is research in this area that can figure out how aggressive your gene is. Along with a consultation with a genetic counselor and your doctor this could help out when you are trying to decide if you should have another child. I am not a doctor nor do I have any medical training. I am just a MEN patient who attended a MEN conference, in June, at MD Anderson Cancer Center. One of our discussions was about having children. This is what I learned, and again, depending on your personal feelings there are options available to you if you want to have a child that does not have MEN. Sandra Daniek, Board Certified Counselor/Clinical Instuctor at MD Anderson Cancer Center related the following information about prenatal diagnosis and pre-implantation genetic diagnosis options. Keep in mind that there are risks that you should speak with your doctor and genetic counselor about. Also, these options do cost money. What Sandra said was that testing can be performed during pregnancy through Chorionic Villus Sampling (CVS) that is performed at 10-12 weeks and preimplantation genetic diagnosis (PGD) of embryos. Genetic testing for MEN is usually available during pregnancy or in conjunction with in vitro fertilization (IVF) if a genetic mutation has been identified in the family. Again, there are risks for complications so if you truly want another child why don't you seek a consultation with a genetic specialist and your doctor. With all the information that is available these days on the web, perhaps a search for prenatal diagnosis or preimplantation genetic diagnosis might be fruitful to you along with a consultation with your doctor and genetic counselor. Best of luck! Vi Hi JWP,

Having children is a very personal decision. Do you know what codon you are? There is research in this area that can figure out how aggressive your gene is. Along with a consultation with a genetic counselor and your doctor this could help out when you are trying to decide if you should have another child.

I am not a doctor nor do I have any medical training. I am just a MEN patient who attended a MEN conference, in June, at MD Anderson Cancer Center.

One of our discussions was about having children. This is what I learned, and again, depending on your personal feelings there are options available to you if you want to have a child that does not have MEN.

Sandra Daniek, Board Certified Counselor/Clinical Instuctor at MD Anderson Cancer Center related the following information about prenatal diagnosis and pre-implantation genetic diagnosis options.

Keep in mind that there are risks that you should speak with your doctor and genetic counselor about. Also, these options do cost money.

What Sandra said was that testing can be performed during pregnancy through Chorionic Villus Sampling (CVS) that is performed at 10-12 weeks and preimplantation genetic diagnosis (PGD) of embryos.

Genetic testing for MEN is usually available during pregnancy or in conjunction with in vitro fertilization (IVF) if a genetic mutation has been identified in the family.

Again, there are risks for complications so if you truly want another child why don’t you seek a consultation with a genetic specialist and your doctor.

With all the information that is available these days on the web, perhaps a search for prenatal diagnosis or preimplantation genetic diagnosis might be fruitful to you along with a consultation with your doctor and genetic counselor.

Best of luck!
Vi

]]> By: JWP http://hagemanfoundation.org/living-with-multiple-endocrine-neoplasia/comment-page-1#comment-330 JWP Wed, 28 Jul 2010 18:02:52 +0000 http://hagemanfoundation.org/?p=128#comment-330 I was diagnosed with MEN1 shortly after giving birth to my first child two years ago. However, I have a very mild case of MEN1 (so far). We do not know whether or not my child has MEN1. We do not want to subject him to genetic testing at his age. However, after learning that I have MEN1, I decided not to have any more children. If I ended up with a child that was very sick with MEN1, I would feel terrible that I had the child while knowing the risk of him or her having MEN1. Although I made this decision, I really wish I could have another child. As MEN1 sufferers, what do you all think about having kids while knowing you carry MEN1? In response to Susan Loso's question about blood clots: I have not heard of any connection between MEN1 and blood clots, and if there were a connection I think I would know of it since I have both MEN1 and blood clots. My blood clotting problem is caused by another genetic disorder called Factor 5 Leiden. None of my doctors have suggested that Factor 5 Leiden or blood clots in general are linked to MEN1. I was diagnosed with MEN1 shortly after giving birth to my first child two years ago. However, I have a very mild case of MEN1 (so far).

We do not know whether or not my child has MEN1. We do not want to subject him to genetic testing at his age. However, after learning that I have MEN1, I decided not to have any more children. If I ended up with a child that was very sick with MEN1, I would feel terrible that I had the child while knowing the risk of him or her having MEN1. Although I made this decision, I really wish I could have another child.

As MEN1 sufferers, what do you all think about having kids while knowing you carry MEN1?

In response to Susan Loso’s question about blood clots: I have not heard of any connection between MEN1 and blood clots, and if there were a connection I think I would know of it since I have both MEN1 and blood clots. My blood clotting problem is caused by another genetic disorder called Factor 5 Leiden. None of my doctors have suggested that Factor 5 Leiden or blood clots in general are linked to MEN1.

]]> By: linda http://hagemanfoundation.org/living-with-multiple-endocrine-neoplasia/comment-page-1#comment-193 linda Thu, 10 Jun 2010 19:24:46 +0000 http://hagemanfoundation.org/?p=128#comment-193 Hi Caroline, I am in fact looking for physicians who know this condition well. Is there any way If I send you brochures that you could take them to his office? We are working in collaboration with Mayo Clinic, because I do not want misinformation to be posted on the web regarding anything on this site. I am trying to get the information out on MEN that is factual ,actual and medically approved on Hageman Foundation. Look through www.multipleendocrineneoplasia.org and let me know what you think of the site. also let me know if you would if you could use some brochures or bookmarks (a save the date bookmark) We are working again in collaboration with Mayo Clinic, in Rochester, MN. this seminar is for non-medical people and for medical personnel, It is scheduled for September 15-18, 2011. Thank-You Caroline for using our website service and hope it was informative for you. If not let me know what concerns you have and I will research the information you need. Linda Hageman, RN Hi Caroline,
I am in fact looking for physicians who know this condition well. Is there any way If I send you brochures that you could take them to his office? We are working in collaboration with Mayo Clinic, because I do not want misinformation to be posted on the web regarding anything on this site. I am trying to get the information out on MEN that is factual ,actual and medically approved on Hageman Foundation. Look through http://www.multipleendocrineneoplasia.org and let me know what you think of the site. also let me know if you would if you could use some brochures or bookmarks (a save the date bookmark) We are working again in collaboration with Mayo Clinic, in Rochester, MN. this seminar is for non-medical people and for medical personnel, It is scheduled for September 15-18, 2011.
Thank-You Caroline for using our website service and hope it was informative for you. If not let me know what concerns you have and I will research the information you need.
Linda Hageman, RN

]]> By: Linda hageman, RN http://hagemanfoundation.org/living-with-multiple-endocrine-neoplasia/comment-page-1#comment-22 Linda hageman, RN Wed, 24 Mar 2010 02:32:38 +0000 http://hagemanfoundation.org/?p=128#comment-22 Thank-You Caroline. Would it be possible to elaborate more on Dr. Ross and Mass General Hospital. We appreciate your information. Welcome to our web site. We are trying to contact more people who have the need for the information we provide. We also welcome any suggestions you may have to improve and refresh our site. Many things are happening in Endocrinology and we try to keep people up to date, so we do appreciate your input. If possible could you take our information to Dr. Ross so he can give it to more people with MEN. Linda Hageman, RN Thank-You Caroline. Would it be possible to elaborate more on Dr. Ross and Mass General Hospital.
We appreciate your information. Welcome to our web site. We are trying to contact more people who have the need for the information we provide. We also welcome any suggestions you may have to improve and refresh our site. Many things are happening in Endocrinology and we try to keep people up to date, so we do appreciate your input. If possible could you take our information to Dr. Ross so he can give it to more people with MEN.
Linda Hageman, RN

]]> By: Caroline Tanner http://hagemanfoundation.org/living-with-multiple-endocrine-neoplasia/comment-page-1#comment-21 Caroline Tanner Tue, 23 Mar 2010 18:35:57 +0000 http://hagemanfoundation.org/?p=128#comment-21 Dr. Ross at Mass General Hospital knows a great deal about this condition. Dr. Ross at Mass General Hospital knows a great deal about this condition.

]]> By: Ross Greenberg http://hagemanfoundation.org/living-with-multiple-endocrine-neoplasia/comment-page-1#comment-17 Ross Greenberg Tue, 16 Mar 2010 02:04:17 +0000 http://hagemanfoundation.org/?p=128#comment-17 Good evening. My wife has MEN1. She went through the octreotide scan. It was negative. She also went through the endoscope with sonogram. Also negative. We're trying to find an endocrinologist who knows of MEN1 and has a precedence for treating it. We live in the NY-Tri-State Area. We'll obviously travel wherever we need to in order to partner with the right person. Recommendations, please and thanks. G*d Bless. Ross Greenberg Good evening.

My wife has MEN1. She went through the octreotide scan. It was negative. She also went through the endoscope with sonogram. Also negative. We’re trying to find an endocrinologist who knows of MEN1 and has a precedence for treating it. We live in the NY-Tri-State Area. We’ll obviously travel wherever we need to in order to partner with the right person. Recommendations, please and thanks.

G*d Bless. Ross Greenberg

]]> By: Linda hageman, RN http://hagemanfoundation.org/living-with-multiple-endocrine-neoplasia/comment-page-1#comment-15 Linda hageman, RN Mon, 15 Mar 2010 21:07:55 +0000 http://hagemanfoundation.org/?p=128#comment-15 Hi Susan, Thank-You for posting on www.multipleendocrineneoplasia.org. In the literature I have read I do not recall a connection between blood clots and MEN, however I will do some researching on this and will get back to you if I do. If you have a known pituitary tumor and are having blurring of your vision and headaches, I would make a appointment with your physician to have the pituitary adenoma reevaluated. I hope you can make it to the seminar Sept.2011. It will be in Rochester, MN. I go to Mayo Clinic for my MEN care and I have several physicians who want to participate in this seminar. I am so blessed to have such wonderful physicians who have helped and have been so encouraging with this non-profit. Hi Susan,
Thank-You for posting on http://www.multipleendocrineneoplasia.org. In the literature I have read I do not recall a connection between blood clots and MEN, however I will do some researching on this and will get back to you if I do. If you have a known pituitary tumor and are having blurring of your vision and headaches, I would make a appointment with your physician to have the pituitary adenoma reevaluated.
I hope you can make it to the seminar Sept.2011. It will be in Rochester, MN.
I go to Mayo Clinic for my MEN care and I have several physicians who want to participate in this seminar. I am so blessed to have such wonderful physicians who have helped and have been so encouraging with this non-profit.

]]> By: Susan Loso http://hagemanfoundation.org/living-with-multiple-endocrine-neoplasia/comment-page-1#comment-14 Susan Loso Mon, 15 Mar 2010 20:34:17 +0000 http://hagemanfoundation.org/?p=128#comment-14 Unfortunately, I will not be able to get to Texas in June, but hopefully will make it to a seminar in 2011. My family (3 out of 4 children) in my immediate family have MEN-1 passed from my father (there were 4 out of 7) with MEN-1 in his immediate family that have MEN. QUESTION though, has anyone ever came across a physician that feels blood clots has anything to do with MEN?? -- Two of my aunts with MEN-1 have horrible blood clots and I am going to be evaluated for a circulation problem that may possibly be causing my visual changes in my right eye and headaches (since September)!! -- recently diagnosed with a 3-mm microadenoma of the pituitary which of course has been ruled out as a source of these symptoms. Any info anyone can provide, would be appreciated. Unfortunately, I will not be able to get to Texas in June, but hopefully will make it to a seminar in 2011. My family (3 out of 4 children) in my immediate family have MEN-1 passed from my father (there were 4 out of 7) with MEN-1 in his immediate family that have MEN. QUESTION though, has anyone ever came across a physician that feels blood clots has anything to do with MEN?? — Two of my aunts with MEN-1 have horrible blood clots and I am going to be evaluated for a circulation problem that may possibly be causing my visual changes in my right eye and headaches (since September)!! — recently diagnosed with a 3-mm microadenoma of the pituitary which of course has been ruled out as a source of these symptoms. Any info anyone can provide, would be appreciated.

]]> By: linda http://hagemanfoundation.org/living-with-multiple-endocrine-neoplasia/comment-page-1#comment-9 linda Thu, 04 Mar 2010 19:08:34 +0000 http://hagemanfoundation.org/?p=128#comment-9 I too will be attending the MEN Seminarat MD Anderson. to speak and have an informational table. Hageman Foundation for Multiple Endocrine Neoplasia is a non profit my husband and I started 3 years ago. I had to have a complete Whipple Procedure (removal of pancreas, stomach, large intestines, gall bladder etc) I was no longer able to work as a nurse so we went to The Mayo Clinic in Rochester, MN and asked what they thought about us starting the first non-profit dedicated to MEN and all it has to offer. Since that time we have been to several Endocrine meetings and only post factual, accurate, medical information. It was one of my goals to only put out the latest and approved medical information available. Mayo Clinic is backing www.multipleendocrineneoplasia.org along with several other major medical centers. At this time we are in the process of planning a 4 day seminar at Mayo Clinic in September 2011. Please feel free to call me 865-981-8815 or e mail me. Linda Hageman, RN linda@hagemanfoundation.org I too will be attending the MEN Seminarat MD Anderson. to speak and have an informational table. Hageman Foundation for Multiple Endocrine Neoplasia is a non profit my husband and I started 3 years ago. I had to have a complete Whipple Procedure (removal of pancreas, stomach, large intestines, gall bladder etc) I was no longer able to work as a nurse so we went to The Mayo Clinic in Rochester, MN and asked what they thought about us starting the first non-profit dedicated to MEN and all it has to offer. Since that time we have been to several
Endocrine meetings and only post factual, accurate, medical information. It was one of my goals to only put out the latest and approved medical information available. Mayo Clinic is backing http://www.multipleendocrineneoplasia.org along with several other major medical centers. At this time we are in the process of planning a 4 day seminar at Mayo Clinic in September 2011.
Please feel free to call me 865-981-8815 or e mail me.
Linda Hageman, RN linda@hagemanfoundation.org

]]>