Guest guest Posted November 23, 2000 Report Share Posted November 23, 2000 Lori, I have so many unanswered questions also......I'm very tired of experts saying that is a very good question....give me a good answer please. Where does the rate of nf2 tumors being cancerous come from(1 in a100)?? Nf2 is part of the family of cancer genes, but it is a tumor -suppressor gene not a proto-oncogene, which are the ones that specifically cause cancer(when mutated) when combined with another hit. Make sense? the more i learn, the more confused i get. i just feel there is something else there....which would explain the variation of presentation and growth rate of tumors. any theories?? on 24/11/00 3:07 AM, Lori Phibbs at lphibbs@... wrote: > ok, I'll bite:) > > I asked my rad on (Radiation Oncologist)' specically this Q. He said no > to it. To his knowledge nf2 is and never will be cancer. The cancer is > another disease totally. I asked because I was worried that about my FRS, > in that I would develop cancer from it. But, the percentage to get cancer > is so high, and getting higher!! the risk of FRS raising that percent is > very slight to not at all. It stands to reason that all radiation effects > human tissue to become cancerous, but I don't think they choose to > acknowledge that link( at least not the Dr I spoke to). Also a true story, > one would not chose radiation therapy for the fun of it either, weighing out > the good and the bad, you make your choice. What I have heard is > * That NF2 and cancer are unrelated diseases > * the cancer rate of NF2 is 1 tumor in a 100 of being cancerous > *that FRS does not " cause " cancer (personally I think it does) > *Gamma will cause cancer in 30 years > > There are SO MANY unanswered Q's and Q's with answers that > just don't ring true. So any info you have, I'll read:) -Lori:) > > > fact or fiction >>>>> >>>>> >>>>>> Can I ask the crew has there been any clinical evidence (someone > getting >>>>> it) >>>>>> that Nf2ers are more prone to developing cancer ?? I know they SAY >>> that >>>>>> this should happen..... >>>>>> rosemary >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>> >>>>> >>>>> >>>>> >>>> >>>> >>>> >>>> >>>> >>> >>> >>> >>> >> >> >> >> >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2000 Report Share Posted November 23, 2000 Lori, I have so many unanswered questions also......I'm very tired of experts saying that is a very good question....give me a good answer please. Where does the rate of nf2 tumors being cancerous come from(1 in a100)?? Nf2 is part of the family of cancer genes, but it is a tumor -suppressor gene not a proto-oncogene, which are the ones that specifically cause cancer(when mutated) when combined with another hit. Make sense? the more i learn, the more confused i get. i just feel there is something else there....which would explain the variation of presentation and growth rate of tumors. any theories?? on 24/11/00 3:07 AM, Lori Phibbs at lphibbs@... wrote: > ok, I'll bite:) > > I asked my rad on (Radiation Oncologist)' specically this Q. He said no > to it. To his knowledge nf2 is and never will be cancer. The cancer is > another disease totally. I asked because I was worried that about my FRS, > in that I would develop cancer from it. But, the percentage to get cancer > is so high, and getting higher!! the risk of FRS raising that percent is > very slight to not at all. It stands to reason that all radiation effects > human tissue to become cancerous, but I don't think they choose to > acknowledge that link( at least not the Dr I spoke to). Also a true story, > one would not chose radiation therapy for the fun of it either, weighing out > the good and the bad, you make your choice. What I have heard is > * That NF2 and cancer are unrelated diseases > * the cancer rate of NF2 is 1 tumor in a 100 of being cancerous > *that FRS does not " cause " cancer (personally I think it does) > *Gamma will cause cancer in 30 years > > There are SO MANY unanswered Q's and Q's with answers that > just don't ring true. So any info you have, I'll read:) -Lori:) > > > fact or fiction >>>>> >>>>> >>>>>> Can I ask the crew has there been any clinical evidence (someone > getting >>>>> it) >>>>>> that Nf2ers are more prone to developing cancer ?? I know they SAY >>> that >>>>>> this should happen..... >>>>>> rosemary >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>> >>>>> >>>>> >>>>> >>>> >>>> >>>> >>>> >>>> >>> >>> >>> >>> >> >> >> >> >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2000 Report Share Posted November 23, 2000 gee Sheryn, you sure have had you r share. thanks for your reply, I think your drs on the prairie were right about the treatment recommendations. I think you're correct about which are Nf tumors, but I don't know about jugular foramen, I don't even know where it is... Did I understand correctly that they gave you chemo for 11/2 years and it has gone? when did the brainstem glioma happen in relation to your Nf2 diagnosis? rosemary. on 24/11/00 3:50 AM, sherynstewart at SHERYNSTEWART@... wrote: > Hello Rosemary, > > I had Cancer, a tumour in the Brainstem called a Brainstem Glioma. Yes it > is in the Brainstem. But I was told it was not, like the rest of my tumours, > NF2 related. The reasons given: >> because it is a Brainstem Gliomsa, starting growth in the brainstem as > opposed to growing on and or into the brainstem. This also being the reason > for its name. >> NF2 tumors are not cancer tumors. The Glioma is. > > Since I joined the crew I have heard of only one other member mentioning > having this tumour, the Brainstem Glioma. Following radiation treatment of > this tumour, one year later, I developed another at the upper part of the > Brainstem, the first one had been just above the medullary junction (where > the brainstem and spine/ spinal cord join). This I was told was likely > because of the radiation, that following radiation treatments cancer may > move and show in a new location. But given the very low success rate of > Chemotherapy drugs in respect to treatment of brain tumours, radiation was > really the best choice by far. There was something said about very few Chemo > drugs being successful at penetrating the head/neck barrier to reach the > brain. I wish I could remember the wording of the group of Drs in this > respect. But this was not only prairie doc talk, they consulted with drs > from larger centres in Canada. What they told me in respect to Chemo-drugs > and radiation is supported by the Brain tumour foundation info. As well I > have heard the theory of tumors the same as what was previously treated by > radiation showing following treatment in other areas of the body, a few > times since in various articles. I had 28 treatments of FRS on my first > Glioma, because this was not focused to any great respect it could not be > repeated to the upper area and the Drs decided it best to go with Chemo. > They would tell me nothing of the level of cancer involved with the second > tumour and told me following the 1 1/2 year treatments till it disappeaed, > that Chemo is not successful in treating these tumours. > I have also been told the same of the bi-lateral Jugular Foreamen. That > they are not NF2 tumors. But I have been told the bi-lateral AN's, > meningiomas, all the spinal tumours but the Astrocytoma, the epedymomas, > neurofibromas, neuromas,scwannoma's and oh gosh, what is the name of the 2 > that effect and cause such pain in my face as well as the 3 in the sinus > area, anyway, those 5 as well, I am told are all NF2 tumours. Has anyone > else been told these things in respect to cancer, radiation and/or their > tumours? > Sheryn > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2000 Report Share Posted November 23, 2000 on 24/11/00 1:29 PM, Lori Phibbs at lphibbs@... wrote: > Ha ha ha ha, ok!! I asked for info, not Q's Anyways, the info that I'm > quoting, I got from some NF2 stuff that I had bopping around the house about > 3 years ago. I no longer have it too scan for you. I really don't know if > it is true, because I don't ever take any one word as the truth. Lots of > fingers need to be pointing the same way for me to be happy. I got the > info from an NF2 website, I haven't any idea which. It said that 1 in 100 > tumors may be cancerous. I think I have over a hundred tumors, and no > cancer(thank GOD) I know what you are saying, in that by ALREADY HAVING THE > TUMORS AND THAT WE MAKE TUMORS CEASELESSLY we already have ONE STRIKE > AGAINST US. But, I think that the malignancy mutation is wiped out, by > whatever part of the DNA that is still working. Much like mumps or measles. > I don't think we are anymore prone to cancer then any of these illnesses. > I think people on the whole are having a BIG time break down of their DNA. > Cancer and other immunosuppressor illnesses and lots of brain chemical > problems are occuring.) I don't think i can answer any better then that, > what I think. I have not studied this so I am of little help to > ou. -Lori:) > Re: fact or ficton > > > > I love your attitude... I agree, i don' think we are any more prone to cancer. Logic and the experts would say otherwise. l like your immunity theory.....I'm sorry I don't have any more info and keep asking questions. I'm working on my own theory over here. Really, truly. I agree about the DNA breakdown.....Actually, one research scientist here told me that our chromosomal integrity has been compromised by the quality of sperm on offer these days!!! Have fun with that one with your girlfriends, preferably at lunch, definitely eating something that is much better than having..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2000 Report Share Posted November 23, 2000 on 24/11/00 1:29 PM, Lori Phibbs at lphibbs@... wrote: > Ha ha ha ha, ok!! I asked for info, not Q's Anyways, the info that I'm > quoting, I got from some NF2 stuff that I had bopping around the house about > 3 years ago. I no longer have it too scan for you. I really don't know if > it is true, because I don't ever take any one word as the truth. Lots of > fingers need to be pointing the same way for me to be happy. I got the > info from an NF2 website, I haven't any idea which. It said that 1 in 100 > tumors may be cancerous. I think I have over a hundred tumors, and no > cancer(thank GOD) I know what you are saying, in that by ALREADY HAVING THE > TUMORS AND THAT WE MAKE TUMORS CEASELESSLY we already have ONE STRIKE > AGAINST US. But, I think that the malignancy mutation is wiped out, by > whatever part of the DNA that is still working. Much like mumps or measles. > I don't think we are anymore prone to cancer then any of these illnesses. > I think people on the whole are having a BIG time break down of their DNA. > Cancer and other immunosuppressor illnesses and lots of brain chemical > problems are occuring.) I don't think i can answer any better then that, > what I think. I have not studied this so I am of little help to > ou. -Lori:) > Re: fact or ficton > > > > I love your attitude... I agree, i don' think we are any more prone to cancer. Logic and the experts would say otherwise. l like your immunity theory.....I'm sorry I don't have any more info and keep asking questions. I'm working on my own theory over here. Really, truly. I agree about the DNA breakdown.....Actually, one research scientist here told me that our chromosomal integrity has been compromised by the quality of sperm on offer these days!!! Have fun with that one with your girlfriends, preferably at lunch, definitely eating something that is much better than having..... Quote Link to comment Share on other sites More sharing options...
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