Posted by ]a href=}mailto:CLJen2@aol.com}{Christine Jenkins]/a{ on May 04, 1999 at 11:41:45]P{]br{: ]h4{Topic Area: Neurofibromatosis]/h4{]br{: : Does hormone replacement thearpy (i.e., Prempro) have any affect on tumor (neurofibroma) growth? I have noticed an incease of neurofibromas - as well as enlargement of existing neurofibromas, but am not sure whether or not to attribute it to the regular progression of the disorder or to the hrt.]p{:
]p{: Dear Sheila:]p{: I am sorry to hear that your neurofibromas are increasing in size. I really do not know of any data to suggest that sex steroids would influence the size or numbers of neurofibromas. In addition, I do not know of any studies suggesting that these are in anyway influenced by sex steroids. As most replacement steroids are designed to mimic the natural states of sex steriods or somewhat reduced in levels but still retaining the effect, I would doubt that a continuing of sex steriods would influence neurofibromas. The most likely situation is that the natural progression of the neurofibroma and the disease is occuring. If I find anything I will put a posting on the site.]p{: Sincerely,]p{: CCF Neuro[P] MD]p{
]br{Dear Sheila:]br{:My name is Christine. I have NF-2 and have posted a response prior to this one. HRT and Neurofibromatosis is still questionable. I have used HRT in the past and experienced tumor growth acceleration first-hand. If you are having the same experiences, then I suggest stopping the Prempro before things get out of control. I believe that my use of hormones in the past has led me to where I am presently, which is facing major surgery for removal of a meningioma on my temporal lobe, tumors in the orbit of my left eye and optic nerve. If you }feel} like the growth acceleration is directly related to the HRT, then it probably is true. I know that the natural progression pertaining to my case wPosted by
It all happened at Emory in Atlanta. I spent an entire year in Pain Therapy learning to deal with everything. Six days before the surgery, I participated in "Imagery" for its calming effects then took my Goldfish Pond with me into surgery. I made it. Life has changed for me. I will have to participate in Radiosurgery because of unremovable schwannoma located in my cavernous sinus. Wonderful! Let's do it!My personal Neurologist has been helping me cope with pain since 1995 and soon we will be taking me off MS-Contin in 15 mg intervals along with the stupid Ritalin I have to take for focus. Narcotics have some serious side-effects... and I cannot tolerate lack of focus. Writers on narcotics end up self-shredding, if you get my drift.
My pain has regressed. Get me off so I can get on with life. You are the Dynamite Doc who commands respect. Let's keep exchanging NF research. Everything needs to be known. Knowing that I have no meningioma is in a class all by itself. I am thankful. Neurontin will always be for me. You know your stuff and I back you up.
Have a good one, Doc. I have one last question. Do you know any Neurologists at Emory?
Sincerely bald,
Christine
Posted by CCF Neuro[P] MD, RPS on May 29, 1999 at 15:58:33Dear Christine:
I am happy for you that things are beginning to become better in many various avenues. NF-1 is a difficult disease to control and much more difficult to live with. Albert Camus wrote: "In the midst of winter I finally discovered within me an invincible summer". I hope that your invincible summer continues long into the future. Hang in there.
Sincerely,
CCF Neuro[P] MD
Posted by Active women, like myself, have a real problem coping with all weakness caused by the intrusion. Had my HRT been administered using laboratorial identifications designed to identify the guilty hormone, I'd become a true advocate known as "Ms. Anti-Which-One" and my aerobic shoes wouldn't have a temporary affliction known as "Closet-Tight-Syndrome"!Physical therapy is essential after such an intrusion. Exercises coincide with daily activity designed to promote your ability to lift more than 5 lbs. Please explain why there is such weakness involved with craniotomies? If you are right handed, that side is mildly fatigued as opposed to your left side, which is major? I was amazed! After the surgery, descriptive words take longer to recall than before... and for "writer-me", uh... this is not too cool! I must admit, it's getting better everyday.
My position is now 38 days post-op. Things, I must admit, are looking better as the days go by. Strength is gained in a gradual pursuit for the "invincible summer" thus described in the unrelenting advice administer by "The Dynamite Doc from Cleveland".
I have a good feeling. Creativity is like, uh... riding a bike. One never forgets. Keep up the encouragemental perscriptions, Doc.
Thanks,
Christine
Posted by CCF Neuro[P] MD, RPS on June 27, 1999 at 14:25:03Dear Christine:
I am happy that things are beginning to heal and you are on your way to health. "My assumption is that the story of any one of us is in some measure the story of us all...." a line from Frederick Buechner. Let your story to felt among the others who are in pain and suffering.
Sincerely,
CCF Neuro[P] MD
