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| I have a very good friend, and co-worker, whose wife has become very ill. She had Hodgkins Disease as a child but was clear for many years. Earlier this year, after battling with severe headaches she was diagnosed with a brain tumor. They were planning a course of action when she was rushed to the emergency room and they ended up doing emergency brain surgery that night. The tumor had doubled in size in approximately 1 week. A softball sized tumor, identified as a sarcoma, was removed from behind her right eye. This has re-developed several times now and she subsequently had 3 brain surgeries. After heavy radiation she went several months without any sign of the tumors coming back. They really got their hopes up.
Last week at a routine visit, a scan revealed 2 more small tumors in the back of her head outside of the old radiation field. They decided to do another brain surgery, #4, to remove the tumors. Again, in 1 week the tumors had doubled in size. The tumors were again sucessfully removed but one of them hemorrhaged (sp?) so the possibility exists that they didn't get all of the cancer out.
The doctors themselves have admitted that they haven't ever seen anything like this before. My friend and his wife are seeking additional opinions from all over the country as to what to do.... In the meantime, they are keeping their hopes up and a positive attitude. Although, I know it's starting to get to him.
I am not asking for handouts here. I am asking for information regarding who to contact, internet resources, cancer treatment centers, experts etc etc etc. He has asked for help researching this and I thought maybe some of you guys would have an inside line somewhere.
I'm sure they'd appreciate some prayers as well.
Thanks much guys.
Edited by theedz155 9/9/2005 7:19 AM
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Location: Ogden, Ut | The Huntsman Cancer Institute here in Utah may have some answers. It's a place to start anyway.
Best of luck.
Sorno
http://www.huntsmancancer.org/ |
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Posts: 267
Location: Right behind you (tap, tap) BOOO | Sorry top hear about your Friend and his wife, that is a very sad situation. Couple options here in MN would be...
The Parker Hughes Cancer Research Center - http://www.ih.org/
The Mayo Clinic Cancer Center - http://mayoresearch.mayo.edu/mayo/research/cancercenter/
I hope everything works out for them.
Esox23 |
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| Scott, sorry to hear this. I have lost many loved ones to cancer, and I have found the Mayo Clinic and American Cancer Society to be the best sources of information. New treatments are coming out at a rapid pace, so second opinions from different parts of the country can always help. My prayers will be with them. |
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Location: NW burbs of Chicago | Theedz,
I am very sorry to hear about this. Cancer is an insidious disease. I'm not sure how far they want to travel, but Massachutes General has a brain tumor center (http://brain.mgh.harvard.edu/), and a link to how you can get them to refer your case (http://brain.mgh.harvard.edu/referrals.htm).
Also, I found this article about a new type of treatment at New York Presbyterian (http://global.med.cornell.edu/news/nyp/nyp_2005/02_25b_05.shtml).
Also, I don't know if you have any kind of local magazine, but the Chicago magazine always runs the best of Chicago doctors in the January issue, and they have it broken down into many categories of what the doctor treats. University of Chicago and Northwestern both have excellent doctors, but I don't know if they specifically specialize in brain cancer.
I wish your friends well.
Crash McG
Edited by Crash_McGolden 8/26/2005 9:24 AM
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| My mom (rip) was diagnosed with acute myologenous leukemia a few years back and decided on the Seattle Cancer Treatment Center. Very good outfit...focusing on clinical trials, experimental treatments, etc.
www.cancercenter.com/seattle-clinic.cfm |
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Location: Pittsburgh, PA | http://www.upmccancercenters.com |
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Location: ontario canada - Well Anderson Indiana now | Hello, very sorry to hear about this situation, my prayers go out. If it helps, my wife works for the american cancer society, please feel free to contact her anytime with any questions, her name is Laura Market and she can be reached @ 765.620.6619.
Sincerely,
Doug Market |
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| Theedz
you know fishpoops wife Mary lost a long battle with cancer last year however they got all kinds of cancer specialists involved I will call him and ask him to look in on this thread Im betting he may have some sources |
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| Excellent, you all are gentlemen (ladies too) and scholars.
I expected nothing less from you guys.
The problem is that this is new territory. Sarcomas don't grow in the brain. Or at least they're not supposed to. At least that's what I'm told.
Scott
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Location: Forest Lake, Mn. | So sorry to hear about your friends wife. My Phone # is (651) 464-6583 CALL ME. Been there, Done That got the broken heart to prove it.
I know Esox 23 is just trying to be a friend and help, BUT DO NOT UNDER ANY CIRCUMSTANCE GO TO PARKER HUGHES CLINICS IN ROSEVILLE MN. If you call I will say more about them but not on this board. In my opinion PARKER HUGHES should have it's medical liscence revoked. Nuff said about them. They have been investigated. Most major health insurance co's will not cover patients at Parker Hughes.
You don't state where your friend is located. Are they in the upper Midwest/ Mn area. There are really only 2 options in the upper midwest. Mayo Clinic or the University of Mn. They are both the best and most up to date research centers in this area. Mary and I went to both, We chose the U of M. I can explain why in a phone call. There is another excellent center in Spokane WA. but I would have to do some digging to get the info again. Most of the info that I had I have got rid of sinces Marys death, but still can get in touch with her doctors at the U.
Mary was diagnosed with Gliosarcoma. The rarest and most aggresive form of brain cancer. Not to burst bubbles, but the odds here based on the info in your post are not good, not good at all. Sorry, not what u want to hear of course, but am being honest. Of course I am not a medical person and am not liscenced to give medical advice. I speak from the school of hard knocks
If you have the specifc name of the cancer (sarcoma isn't specific enough) you can do a google search and come up with a wealth of information. Also, If you know of any major research universitys near where they are you can google the Neurology Dept and find the website for them. This is how I found Dr. Hall at the U.OF M. I looked up the Neurology deptment and sent a blind email, never expecting a response. I had one the next day and a consultation appointment later in the week. At diagnosis, Mary was given 6 months, she made it 18. I don't know what else to tell you here, my heart goes out to you, your friend and of course his wife.
They are in my prayers, God does answer prayers, but we have to learn that sometimes the answer is NO. Now I understand Jesus prayer in the Garden the night before he was crucified, Father, Take this cup from me. But not as I will, but as thy will. It is in his hands, not ours.
Edited by fishpoop 8/26/2005 11:38 PM
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Location: Forest Lake, Mn. | I might have misspoke on 1 thing in my post above. I said Spokane, WA. I might have been thinking of the Seattle center listed in a previous post. Marys doctor would go out there 2 a year for consultations, the treatments he was providing her were developed out there, but in the interm I forget if it's Seattle or Spokane, If interested I can find out. Give me a few, I'll post the link to the Uof M and Dr. Hall in another post.
P.S. Sarcoma's do start and grow in the brain. Mary's tumors were a primary brain cancer, meaning that they didn't start elsewhere in the body and matastisise (sp?) to the brain. I used to be able to spell the word, but have delieberatly tried to forget everything I know.
The more I think about it I am more postive that it was Seattle and not Spokane. Dr. Hall office can provide more info on them, as a lot of the experimental treatments he uses are pioneared out there. When Mary was treated there were only 5 faculities in the Nation that provided this type of treatments. U of M is one. Sorry, I can't seem to spell anymore.
Edited by fishpoop 8/26/2005 11:31 PM
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Location: Forest Lake, Mn. | Here is the email address for Mary's Doctor
His name Dr. Walter A. Hall email: [email protected] I used to email him directly and he or his staff would respond. I got off my lazy butt and went and found his business card.
Dr. Walter A. Hall M.D., M.B.A., F.A.C.S.
Professor of Neurosurgery, Radiation Oncology, & Radiology
Dept. of Neurosurgery
Medical School
Box 96 Mayo
420 Delaware, St. S.E.
Mpls, MN. 55455
(612) 624-5108
Fax (612) 624-0644
Email: [email protected] I notice a difference between the email address I posted above and the one I put here. It might have changed in 14 months, so am unsure which is correct. The one above I took off their website. This one off his business card.
Other key words to google, NeuroOncology, or Neurosurgery
Website: www.cancer.umn.edu/index.html
If they should contact him, tell them to feel free to use mine and Mary's name as a referance. He will remember her. Her case was unusual. Mary Anne L. Villnow Diagnosis: Gliosarcoma, Date of Death 6-23-04 My name is Paul OR I would contact them also on there behalf if they so want.
Edited by fishpoop 8/27/2005 12:07 AM
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Location: Forest Lake, Mn. | Happy Hooker:
Thanks for the heads up on this, I would have missed it. Haven't been surfing the Muskie sites lately, heart still isn't into fishing yet, so I just don't pay that much attention to the boards like I used to. |
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Location: Forest Lake, Mn. | Here is more info and another website for Dr. Hall and the U of M. By the way Fairview University Hospital and the U of M are one and the same.
www.fairview-university.fairview.org/Clinical_Services/neuro/Brain_Tumor/Center/indes.asp I hope I didn't make any errors in typing this.
They actually preform brain surgery while the patient is inside an MRI scanner. They did this to Mary. Use of the MRI reduces the chance of mistakes, reduces the amount of brain tissue that has to be distrubed during the procedure, and guides the surgeon directly to the tumor site, reduces complications. The pictures provided on this site are the same equipment that was used on Mary
Also, if they chose to come here and she needs nursing home care, contact me on that one too, I can tell you what nursing home NOT to take her to.
Edited by fishpoop 8/27/2005 12:06 AM
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Location: St. Louis, MO., Marco Is., FL, Nestor Falls, ON | Fishpoop:
The spelling is metastasized. Just wanted him to have it if he wants to do a google search. Sorry about your wife. Hard lesson to learn, that God sometimes says no. Also, hard to accept. I'll keep you in my prayers. |
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Location: Forest Lake, Mn. | Bob:
Thanks, for correcting the spelling. I knew it was wrong, and I was so tired that I couldn't get the old brain pan to kick it out. Matastises. Duh.
Still it don't sound good for Theedz friends wife. I talked at length with Dr. Hall during Mary's illness and had a crash course in the subject, again I'm not a doctor and sometimes God says Yes, but....
Theedz: Dr. Hall is very good. Mary had the best care possible. I don't feel, and she didn't either, that she ever got anything less than the best care possible. Dr. Hall is very mild mannered, gentle, laid back, approachable, and will take the time to explain in detail the patients condition, options, prognosis, etc. Most importantly he is a listener. He's not one of these doctors that are an ego manic with what we used to call, The God Complex. He's not I'm God, I know it all, you will do what I say. He's ok, this is your situation, these are the possible outcomes, this is what I can do, what do you want to do?
When Mary was diagnosed at Abbott Northwestern Hospital in Mpls Mn they said, We give you 6 months to live, but we don't have the experience to treat you. We went to Dr. Hall, he said I can't save you either. The cancer will get you in the end. No on can save you. But instead of 6 months I can give you maybe 2 to 3 years. Well, Mary made it a total of 18 months which is a lot more time, and we had some real good time too, before she passed. That's a year more than the doctors at Abbott gave her. A year, though difficult, I wouldn't have had otherwise, or have traded anything in the world for.
Edited by fishpoop 8/27/2005 6:40 PM
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Location: Stevens Point, WI | It's very hard to say where or who is the best to treat this type of cancer. As a medical professional I would use the opinions of the healthcare team and use the facilities they name and trust the care of their patients to. Unfortunately with a disease like cancer some people have great results and some people don't, so people tend to be real biased in their opinions on certain medical centers and physicians. |
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Location: Forest Lake, Mn. | Muskie Medic:
I do see your point, but no where in my posts did I tell them where they have to go. I have been there and done this. I speak from experience. If they chose to go to another medical facility, that's their choice. I've fought my battle and am giving the benefit of my knowledge.
He's asking for info, I gave it to him. My opinion, biased? No I don't think so.
As far as Parker Hughes goes, we did start out there and I have knowledge of the place that I can't share here due to liabel and slander suits. But we've been there and I know. Based on my experience I'm telling Theedz to stay the hell away. I know of doctored clinical trials that have been done there to show that their treatments are more effective than what they actuall are. I do know that the major health insurance companys have stopped paying Parker Hughes claims. I guess if you want to consider that biased, then you can.
As for my comments about Dr. Hall, again I speak from experience. I spent over a year in his office, in the hospital rooms, the hallways, the clinics, post op wards, etc. He was able to explain to Mary and I her condition in language what we could understand, being that we're not medical professionals. I have a high regard for the man and his talents. In all of this we dealt with many doctors at many faculities, I have a good basis for comparison. Most Doctors at that level of medicne have the arrogant God Complex. You don't like the term, fine deal with it. But you being a medical person yourself know that I'm not bullsh**ing.
Also, these types of cancers are so rare, that most cancer treatment facilities do not have the equipment or the knowledge to treat them, much less having the cutting edge treatments and research availible. There's only a few places to go to. The Mayo Clinic and University of Minnesota Fairview are the only places in the upper mid west. that can even begin to treat these types of cancers. There might be some in Chicago, but I don't know of them or have first hand dealings with them so I don't mention them.
If theedz friends chose Dr. Hall great, I'm confident that he will do all he can. If they chose elsewhere that's their dicision to make. Their the patient here, not I. They have to feel confident and comfortable with their doctor and treatment. I am suggesting Dr. Hall for their consideration based on my experience with the man. If that is bias then, OK I am biased.
As for your point about results varing and thusly effecting ones point of view, well Mary still died didn't she? Most people would think that I would NOT refer to Dr. Hall because he didn't cure her. Read my posts above. She didn't stand a chance. She was the prisoner sentenced to death without possibility of a stay of execution. Dr. Hall gave us a year together that we wouldn't have had otherwise. All Dr. Hall was able to do was to put off the date of execution. Sounds like a #*^@ fine lawyer to me. If you follow my analogy.
Oncology has to be one of the most soul and gut retching branches of medicine. You go to work each day knowing that the vast majority of your patients are going to die, and there isn't a dam thing you can do to change it. You see the patients and families physical and emotional agony every second of every working day. These hero's dont work 9-5 They come to work one day and go home 2 days later, catching catnaps in the lounge or office. Spend some time on a cancer ward. I don't mean a couple of hours. Come on in and stay awhile, say 36 hours straight with only 3 or 4 hours of sleep. And do this for a few weeks straight. I have, it gives one a new respect for life and their fellow man, as well as sympathy for death, grief, and pain.
If I am biased. Then shoot me, Please. I would just get to go and be with Mary if you did, so I got nothing to lose.
Edited by fishpoop 8/28/2005 11:51 AM
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Location: Stevens Point, WI | I'm not knocking you at all fishpoop, just giving my opinion on the matter. I'm very glad you and your wife were taken care of very well by the Oncology staff there. I certainly don't envy the Oncology Department here, they have a very high burn out rate. I work with cancer patients everyday and you are absolutely right about people have a choice of where to go, especially if it's a very rare and complicated form of cancer. I find it fascinating the leaps and bounds that are being made now with treatments, especially the doctors who aren't afraid to try something new and untested, for many patients hope is an extremely powerfull medicine, much more powerful than we can offer in the hospital. |
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Location: Rhinelander, Wisconsin | Easy FP, my friend, Medic was making a general statement, that's all. He's a great guy, a medical professional, and I promise you he's very sensitive to the pain you still carry.
Theedz, my mother had melanoma cancer 4 times, beat it all 4. She passed away form a heart attack which was totally unrelated.
Cancer treatment centers abound, and one thing I can tell you is there are no miracle workers out there. The science is what it is, and there simply is no silver bullet. One difficulty is there are so many varied types of the disease, so a 'cure' for one may not even touch another. When I go, unless I encounter an accident, it'll probably be the big C that gets me. My family has a history on both sides.
There isn't any explanation as to the why or justification either, it just plain is. Plain isn't fair.
My prayers to the family, and hopes that they can locate a doctor who can help. |
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Location: Forest Lake, Mn. | Ok, maybe I am a lot sensitive and I'll cool my jets.
Yes, for most cancers there are many many places to go to and seek treatment. But for the kind that Mary had and based on what theedz has desribed here, there are only 2 places in the upper midwest 5 state area to go to. The Mayo Clinic or the U of M. Period! I wish there were more because it would mean that treatments for these types of brain cancers have advanced consideralby from where they are now.
Mary had Gliosarcoma, Theedz friend has some form of sarcoma, and also in the brain. Also the general location of the tumors in the brain is similar. Marys was futher back in the brain and not right behind the eye, but it was affecting the optic nerve. I would bet that these 2 cancers are the same thing, or very very close.
When Mary was diagnosed we were told that only 2-3 cases a year are found in the entire state of Mn. When she died she offered her brain to the Uof M for research purposes. They didn't want it. They said that there aren't enough cases of this type of cancer for them to spend the $$$ and do research. It was a $$$ to benefit ratio that didn't stack up. So there again There is only 2 places in the upper midwest 5 state area that has the knowledge, staff, and any experience or expertese to treat these types of cancers. The Mayo Clinic or the Uof M. Period.
Theedz doesn't say where in the country they are located. There are other centers that do treat this kind of cancer. Seattle is one. Beyond these 3 choices I have no knowledge. If I did I would gladly post it. I don't care if they go to Seattle, the Mayo, the UofM, another center elsewhere in the country or hire a witch doctor. But if they want treatment somewhere in the upper midwest they can go to the U or to the Mayo Clinic. That's reality and that's the choices in this neck of the woods. This was our only options to take Mary, the U or the Mayo! The rest of the oncology depts don't have the ability to treat these kinds of cancer. Now do you understand me? One can't just go anywhere with certain types of cancers. Theedz friend appears to have one of those types. There just isn't anyplace else to go. If I had more info for contacts at the Mayo I would post it. I don't have that info anymore. Mary and I did go to the Mayo to see what they had to offer us. Our decision based on a number of factors that I won't go into here, was for the U of M. rather than the Mayo. Theedz friend might make the decision for the Mayo instead.
I remember well they day we went down to the Mayo to pick up her records and tell them that we were seeking treatment elsewhere. We got back out to the truck and sat in it for over a 1/2 hour crying and wondering if we were making the right decision. After all, how does one turn down the WORLD famous Mayo Clinic. We sat there and sat there, are we doing the right thing? Of course there is no way to know the outcome if we had stayed with the Mayo, Mary might have lived longer, she might have died sooner. I don't know. But I do know that we both were pleased with the treatment she received from Dr. Hall at the U. I can't tell Theedz anymore than what I experienced. Actually now that I think about it, when we turned the Mayo down we didn't know about the U of M or Dr. Hall. We walked away from them without having another doctor to help. We didn't know anyone else. The doctors she had seen couldn't continue to treat her and we had the Mayo or nothing as our options and we just turned down the Mayo. So we had nothing. That's when I sat down to the computer, like Theedz is doing here, and started looking. That's how I found Dr. Hall. online. Actually I sent a blind email to one of his colleauges at the U and Dr. Neglia responded and sent us to Dr. Hall.
I wish I could tell them of more options but there isn't any around here.
And again if that make me biased, then I plead gulity!
Edited by fishpoop 8/28/2005 6:03 PM
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| Sorry guys, I have been monitoring but just haven't posted.
We, are both from about an hour north of Madison, WI.
I know he has talked of going to Mayo and has also spoken with Johns Hopkins. I have done some internet searching and found that Northwestern has a comprehensive cancer center that seemed to offer a lot. I was also impressed with the Seattle Cancer Center as well.
I haven't talked to him for a couple of days, I'll post a quick update when I do. I don't know the exact type of sarcoma or the exact type of cancer but he was told that "they just don't grow in the brain". Whatever that means.
Thanks again for all the help. I'll pass on the information, and any more you can provide, and hopefully it will help him with some decisions.
Thanks again.
Edited by theedz155 8/28/2005 9:01 PM
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Location: Forest Lake, Mn. | Theedz:
Sorry about the bickering, not what you came to this site for. I was just getting frustrated with others that seem to think that no matter what the cancer, one can go anywhere and have the same access to the same treatments. Certain cancers, yes, Breast Cancer is widely treated nowdays, and successfully too. But cetain cancers have to be dealt with in only certain places, generally most oncology depts. just don't have the knowledge or expertise to treat the more aggessive or rarer forms of cancer. They don't have the budgets to buy and install some of the equipment, much less the cash to do research and develop new treatments, It take years and millions of dollars to find treatments for some cancers. Most city general hospitals don't have the budgets the staff or the equipment needed to fight the rarer or more aggresive forms of cancer.
Yes, some sarcomas start elsewhere in the body and then metastise to the brain, perhaps this is what is occuring with your friend. Mary's was a sarcoma and it was a primary brain cancer. Meaning that it started in the brain. Now, cancers that start in the brain do not matastise to the rest of the body. I don't know why that is, I just know that it is, from discussions with Mary's doctor.
A cancer is when a cell divides and reproduces, the replica cell isn't a perfect gentic match of the original cell, it mutates in some manner and that is what cancer is. Then the origional mutated cell divides and reproduce itself, but the new cells are all flawd in the same manner as the first one.
A sarcoma is a second mutation. The cancer cell when it reproduces doesn't produce an exact mutated copy of itself. It mutates a second time. So one could almost say that the cancer has cancer. That's why they are so aggresive and hard to stop. I have deliberatly forgotten a lot of what I learned about cancer. I used to know what the various terms meant. sarcoma, the different suffix at the end of the name of the cancer has different meanings that describe the type of cancer. The first part of the name describes where in the body the cancer orginated and the last part tells the type of cancer. Gliosarcoma is a cancer of the Glio cells in the brain. Glio cells form the frame or bones or skeleton, as an analogy, of the brain. They are what gives the brain it's mass, shape, and density. A sarcoma indicates a double mutation of the normal healthy cell, so Gliosarcoma is a double mutation of the healthy glio cells in the brain. Most cancers, and most cancers that respond well to treatment, in general terms, are not sarcomas.
I Hope this explains why treatment options are so limited. Johns Hopkins has an execellent reputation world wide as a top of the line research facility, but I don't know what their oncology dept. is like. I assume that it's up to the standerds of the rest of the hospital and I would feel very comfortable in looking into Johns Hopkins. You say your in Madison and it sounds like your friend is willing and able to travel anywhere they want which is great. I don't know what's availible in Chicago. I know nothing about the University of Illinois. Perhaps, there is options there. If they deceide for whatever reason, that they can't go to far, then to the best of my knowledge their only options are the Mayo or the U of M. and remember Dr. Hall does work with the Seattle Cancer Center. They have a network between WA and MN. Treatments availible out there are availible in MN. Blood Brain Barrier disruption, and interartial chemotherepy as well as MRI assited craniotomies. (sp?) In other words, if some of the treatment that they might like to pursue out west are availible closer to home. But I don't know or claim that all of the treatments out west are availible here.
Theedz, I am giving you every piece of information I have. If I could tell you more I would. I am not biased. As I said above in one of my posts, the patient and family has to be comfortable with their doctor and his approach to treatment. If your friends go elswhere that is their decision, and I hope they get the standerd of care they want. I mean that with sincerity, not sarcasm. I am just giving you the knowledge and info that I have, based on my experiences. I don't know what else to tell you or what else I can do, except pray.
I do know a little about the subject. Actually more than I ever wanted to know. 
Edited by fishpoop 8/29/2005 12:01 AM
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| Here's the link to one man's testimony about how he beat brain cancer. The key was antineoplaston treatment. Hope that it helps.
http://www.cancerguide.org/pleverett_story.html |
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Location: Forest Lake, Mn. | The link above takes one to a site in which a gentleman suffered a Glioblastoma Multiform. This is a cancer of the Glio cells like Mary had, but if I remember what I was taught correctly, this isn't as an aggresive form of cancer as the Gliosarcoma. Though they are both very similar.
I didn't finish reading the article. I couldn't. When he describes the early symptoms and shock of being told that he has a tumor, I just couldn't read anymore.
Theedz, I wish your friends all the best that this world has to offer. If there is something more I can do to help. Please call or email me. |
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| FP - Will do. Thanks for the information.
Same thanks to all the rest of you.
Scott |
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Location: Forest Lake, Mn. | Theedz, Sworral, Muskie Medic:
Sorry if I came a cross as abrasive, or arrogent, or disrespectful to any of you gentlemen. I do deeply and humbly apologise to each and every one of you. I meant no harm or offense to any of you guys. Forgive me.
I am still struggling on a daily basis with what Brain Cancers and their treatments do to the body. To our Judeo-Christian way of looking at things, the brain is the holy of holies of the body. It is where our personalities and our souls are. To have a disease that attacks the brain is harder to bear than one that attacks the rest of the body because, to me at least, Brain Cancers attack not just the body but the person, the soul as well. Believe me when I say that I weep for your friend and his wife. I know all to well what it's like to sit and wait while someone goes poking around the brain of your loved one. It is hard to endure. It is even harder when you know that your not fighting for survivel, but for time.
I guess that knowing of someone else who has been touched by this, has brought back all the anger and hopelessness I felt when Mary was undergoing her battle. In addition to the physical battle of cancer there is the emotional battle as well. One of the most prevelant and overpowering emotions is Anger. Angry that this happend, angry that there is little that can be done to stop or change it. So if my comments or behavior on my posts were offensive or hurtful or inappropreate, again I apologise. I am angry that someone else has to go through this. Isn't it enough that Mary and I had to go through this? Now these folks have to, too? Why, Why, Why? and there is no answer, and that is the begining of faith. Accepting things as they are because there is no answer.
Mary was the one who was sick and she is the one who passed away, but in a very real sense I am a cancer survivor, though I am not sure yet how well I'm surviving. Theedz, remember that this is as hard if not harder on your friend than it is on his wife who is the sick person. Cause he is the one who feels hopeless to do anything and he's the one who'll have to pick up the pieces and move on.
Also, It seems as if I can't spell anymore. Simple words seem to be always misspelled.
Edited by fishpoop 8/29/2005 10:05 PM
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| FP
I have taken no offense at all. No need to apologize to me. The information you provided was very helpful. Thanks again. I am hoping to meet with him today to pass on the information you all provided.
I'm on vacation this week and will try to meet with him on my way north.
Scott |
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| THEEDZ--
So sorry to hear of your friend's dilemma. Sarcomas of the brain are indeed extremely rare and seem to be more common in very young children than adults. They (sarcomas) are one of the most aggressive tumors one can have and rarely cureable minus a limb amputation (aka Ted Kennedy, Jr--osteosarcoma). I strongly agree w/ Sworral in his opion that most CA is difficult to treat and most CA centers have similar options excepting the larger, better known (and hence better funded) centers such as Sloan Kettering in NYC, another in Houston (sorry it's on the tip of my tongue), and the NIH in DC which is the very best place to be here in the US due to their numerous experimental protocols available. There are incredible numbers of CA ctrs these days across the US, most of which do similar "garden variety stuff".
Neurosarcomas have an incidence of 0.001% (extremely rare!) in the general population and 4.6% in patients with Von Recklinghousen's disease, commonly termed Neurofibromatosis. They arise from malignant transformation of a peripheral nerve sheath cell (the covering of a nerve, as from the eye nerve in this case). They often originate from a pre-existing nerve sheath tumor, a neurofibroma (as alluded to above). They can originate in areas of prior radiation treatment as well. Does your friend have Neurofibromatosis (has she had genetic testing as yet?) or has she had any type of radiation or expose to her head? When they occur in the head they more commonly involve the Trigeminal (5th cranial nerve in the frontal skull base) or the acoustic nerve (eigth cranial nerve, hearing nerve located medial to the ear off the brainstem). I've never personally heard or read of a case such as this arising from the optic nerve! Certainly your friend merits a case report study for a reputable neurosurgical journal.
Survival rates are very poor--16 to 53% @ 5 yrs being optimistic here. Sarcomas love to spread and fast. All tumors/cancers are a result of multiple (6 to 7) chromosomal mutations that slip by our normal defenses. Some of us are born with genes that lend us much more susceptable to getting cancers and fighting them off as well. The c-myc gene mutation is a great example where family members can develop a multitude of different cancers at different ages (lung, breast, thyroid, pancreas, colon, etc). Definitely a scary thing to think about!
Your friend's tumor is rare enough that a major center might just be interested in taking it on. Have her inquire with her neurosurgeon whom/where he/she might suggest and have her go there now. Time is indeed quite short!
God's blessings and best of luck!
JK
Neurosurgeon and muskie maniac extraordinaire! |
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