ENDO Messages for October, 2005: Re: aggressive angiomyxoma

Re: aggressive angiomyxoma

From: anonymous@obgyn.net
Thu Oct 6 22:12:58 2005

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At Fri, 16 Jan 2004, Marcia wrote: >
>At Sun, 19 Oct 2003, debbie wrote:
>>
>>I want to reply to all who have the angiomyxoma tumor. I have had this
>>tumor 4 times. It has occurred each time I got pregnant. Finally in
>>1998 I found a great doctor in Las Vegas who saved my life. My tumor
>>was 10#'s and she removed it and it has not come back since. After the
>>removal of the tumor I was in bad medical shape, I got poisoning from my
>>urine and bowel along with having to have an emergency hystorectomy, a
>>colostomy as well as a tube in my kidney. Anyway, despite the pain I
>>was in from the 8 hour surgery along with the other emergency surgeries,
>>I survived and have been tumor free for 5 years. I am on Estrace, 2mg
>>and that is it. I had Lupron therapy for 6 months following the
>>surgery. Good luck to all!!!
>>
>>At Fri, 18 Apr 2003, melinda wrote:
>>>
>>>At Fri, 15 Mar 2002, Danielle wrote:
>>>>
>>>>At Sat, 28 Jul 2001, Paula wrote:
>>>>>
>>>>>I was diagnosed 3 weeks ago as having this cancer. The tumor was found
>>>>>during my hysterectomy on June 11, 2001.
>>>>>I'd love to hear from others with this cancer, I fear the mutilation of
>>>>>the "radical hysterectomy" scheduled in 2 weeks to make sure the tumor
>>>>>has been completely excised. I'm starting to wonder if I should opt to
>>>>>not have surgery.
>>>>>No other treatment was suggested.
>>>>>
>>>>>At Sat, 21 Apr 2001, anonymous@obgyn.net wrote:
>>>>>>
>>>>>>to carolyn who has this rare tumour...my sister also suffers from this
>>>>>>please reply as to how you are now are you in pain as my sister is daily
>>>>>>what treatment are you taking...would love to hear from you or anyone
>>>>>>else suffering from same...many thanks Geraldine
>>>>
>>>>Hello to all who suffer from aggressive angioxyoma, my mother has also
>>>>been diagnosed with this growth tumor. She has already had a total
>>>>hysterectomy in February 2000. There is a new growth now, March 2002,
>>>>and we are looking for other options to surgery, and also to speak with
>>>>others with this growth. Any help would be greatly appreciated.
>>>
>>>I've been diagnosed with angiomyxoma in 1994. I had surgery to remove
>>>what they could but it came back again. It was not malignant. I have
>>>been taking megace for the tumor for the last 8years & it is keeping it
>>>under control. My doctor feels surgery is really not a good option
>>>because it is so aggressive
>>>& will only come back again. The only thing with the megace is that you
>>>gain alot of weight because its a hormone & also an appetite stimulant &
>>>it's hard to diet when you're on it.
>>>>
>>>>--
>>>>Danielle C. Varney
>>>>
>--
>I have had an angiomyxoma for 8 years. I have had five surgeries and it has returned again!!!!!!!!!!!!!!!!!!!!!!! If there is anyone who can give me information on a doctor in the So. Calif or anywhere that I can speak to please let me know. I would like to get other opinions on treatment.
>Thank you.
>

--
My mother has been battling aggressive angiomyxoma since 1992. When they found
out she had it the done a complete hysterectomy and also took 99% of the tumor
out. She had yearly OBGYN visits after that, up until 3 years ago when she
found out that the tumor had grow at a rapid rate and around that she has a
large femoral herina that has since came out of her vaginal area the size of
a soccer ball.The doctors that treated her condition will not see her anymore
they say that there is nothing else to do for her. We will not take no for an
answer. She tried chymotherapy and it only made the angiomyxoma mad and
started growing again. Now it has quit growing but the tumor has not.
If anybody knows a Doctor who thinks that they may be able to do something,
please email me back. We need serious help.
 Thank you.

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