Guest guest Posted May 2, 2003 Report Share Posted May 2, 2003 " Peggy C. Durant " <pdurant@c...> wrote: Though you don't know me, I feel that you have > become a friend - the knowledge you have accumulated and share so > unselfishly with this group is astounding. And all done with > compassion, humor and good cheer. I am also coming to know many > beautiful personalities in the others that share here. -----Hummm, you reading over our backs, this is how we all feel, and you took the words out of our mouths for sure. > > BTW, my husband and I have decided for him to keep on taking the > antioxidants and other supplements while on chemo and radiation. -----Have thought this is the right answer. " specially after it sinks in, surgery is the cure (in most cases) not the chemo. Your newest friend, who like you, wishes this place didn't exisit due to an illness such as cc. Always the Best, Betty B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 Betty - Afraid so - I confess! I am reading 'over your backs' and as a consequence finding out how woefully ignorant I was about the entire subject! Thanks to all for helping to educate me. The more I read, the more questions I have - no doubt will be back to bug you all with them in due time. :-) Peggy PS - Now I'm up to message 1051 - making progress! " Betty B. " wrote: > -----Hummm, you reading over our backs, this is how we all feel, and > you took the words out of our mouths for sure. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 " Peggy C. Durant " <pdurant@c...> wrote:finding out how woefully ignorant I was about the entire > subject! -----Still months later, it is only the tip we can all learn at once. Bob's onc. he had first (I find out more and more) was sooooo bad. Not only did he make decisions for us, and not inform us, he also didn't keep up on his trade. Whenever I wanted to find out something, I had to call him. In contrast, the second onc. at OSU has written me a 3 page letter (copied to) detailing all past, present and future actions. What a dif a professional onc on your side makes. When the surgeon (Dr. M at OSU) came in after doing the surgery, he had said Bob didn't have a large tumor load. He also said depending on what the path/report says is what will tell it all. You would have thought tho, they could have drawn some of the fluid (ascistis sp)and checked the cell type like that prior to the surgery tho, not gotten our hopes up as high then either. Bob's cell type " Although there were some mucinous features, it is not a typical pseudomycxoma peritoni. " " Arising from the appendix, typically would have a high likelihood of carcinomatosis. " The chemo treatment is our plan for now, and our need to get pass that first before any other action plans. CP11 worked prior. Getting the second opinion prior to surgery (or even prior to any chemo) is the best thing. Getting if possible, a sample to test to see which chemo works is good too, not all do. And maybe another type in the future would work as well. Best of luck to your husband, and he is super blessed to have a wife who is so active and learning about all that can be done for his care. Always the Best, Betty B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 Peggy wrote: - You really blow me away - I'd be hard pressed to recall knowing another who, being caught up in a life and death struggle of his own, is so readily available to others doing the same. I soak up the information you provide and your words of encouragement like a sponge. ------, I just had to pop in here and SECOND Peggy's comment and how helpful you are to all of us. I have " lurked in the background " reading everyone's email and trying to gain knowledge about this horrible disease--and I am one who does not have cancer--am not a caregiver, but my beloved brother in KY has CC--has gone thru chemo 5FU/Lev and so far, so good with NED. But, I am scared to death he will not be vigilant and get PET/CT or some sort of test and will let it get beyond control. I tried my best to get him to go to Vanderbilt U for tests about 6 months afterward, but he said no. I know he just doesn't like to think about it and wants to be " away from CC. " , I admire you so very, very much! With all the other things in your life--to care so much about virtual strangers tells me a lot about what kind of man you are. I hope in some way we can send encouragement and good strong prayers your way to make you well! Love, Gurlstar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 Betty - Some of the things you mention here were not even mentioned to us - such as testing the tumor cells to see which chemo works best. Also, due to Tim presenting with an obstruction, there seemed to be NO time for a second opinion. Plus once my husband knew about the tumor, he wanted it out immediately...he didn't even like waiting over the weekend. A few weeks after surgery, all the records and Tim were seen by Dr. Ramanathan of UPMC in Pittsburgh for a second opinion. We were told that Dr. Ramanathan is a specialist in gastro-instestinal tumors. Last visit with the local radiologist, he mentioned in passing that he and the chemo oncologist disagreed with Dr. Ramanathan's report " a bit " - in that they rated the tumor at T3 and Dr. Ramanathan's report rates it at T4. I don't think it is cause for concern since Ramanathan's recommendations for treatment agree with Tim's local doctors - 5FU/LV and possible radiation. The radiation onc, however, had changed his tune completely from our initial consult soon after surgery when he said it was unlikely he would recommend radiation to the last visit when he scheduled a simulation for this coming Wednesday to see if radiation is feasible. If it is, then 5X a week for 5 weeks is planned, beginning with the next round of chemo starting on 5/19/03. Now I wonder if Dr. Ramanathan's characterization of the tumor as T4 had something to do with the change of heart. Tim's tumor was through the subserosa but not through the serosa....which is what I thought meant the tumor was T3. However, the tumor area was adhering to the abdominal wall...though there were no cancer cells found in the scrapings from that area. Maybe it was borderline and could be rated either 3 or 4....knowing that reasonable minds can differ? I hope everything goes well for Bob. I think you are a lot like me...trying to leave no stone unturned in learning what is best and somewhat surprised to learn there's no sure way to know. Peggy " Betty B. " wrote: > " Peggy C. Durant " <pdurant@c...> wrote:finding out how woefully > ignorant I was about the entire > > subject! > -----Still months later, it is only the tip we can all learn at once. > Bob's onc. he had first (I find out more and more) was sooooo bad. > Not only did he make decisions for us, and not inform us, he also > didn't keep up on his trade. Whenever I wanted to find out something, > I had to call him. In contrast, the second onc. at OSU has written me > a 3 page letter (copied to) detailing all past, present and future > actions. What a dif a professional onc on your side makes. > When the surgeon (Dr. M at OSU) came in after doing the surgery, he > had said Bob didn't have a large tumor load. He also said depending > on what the path/report says is what will tell it all. You would have > thought tho, they could have drawn some of the fluid (ascistis sp)and > checked the cell type like that prior to the surgery tho, not gotten > our hopes up as high then either. Bob's cell type " Although there > were some mucinous features, it is not a typical pseudomycxoma > peritoni. " " Arising from the appendix, typically would have a high > likelihood of carcinomatosis. " The chemo treatment is our plan for > now, and our need to get pass that first before any other action > plans. CP11 worked prior. Getting the second opinion prior to surgery > (or even prior to any chemo) is the best thing. Getting if possible, > a sample to test to see which chemo works is good too, not all do. > And maybe another type in the future would work as well. > Best of luck to your husband, and he is super blessed to have a wife > who is so active and learning about all that can be done for his care. > > Always the Best, Betty B. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2007 Report Share Posted July 23, 2007 {{{{{Peggy!}}} ahh. Your such a sweetie. No.I am not dxd. But they think I have a dysautonomia disease. Its a disease that effects your autonomic system,basically anything that functions automatically. Like your bp,and pulse,heart,and stuff. I seen the cardiologist and he did a few ekgs,he said he thinks that the nerves to my heart and around are not working properly.I had a holter monitor,then I go for a table tilt test aug.3rd.they will strap me to a table and move it all different ways to see what my bp and pulse and all that are.I hope you are doing ok. Once again im behind on posts.lol. hugz,cassy --- MSersLife wrote: > Cassy, > > Did I miss a post? Did you get a dx? What was it if you did? I'm > sorry if I missed it. Please let me know. Thinking of you. > > Hugs, > Peggy > > > > > > > > > > Wait until you get the FINAL word Cassy. And then > > > go to the Mayo or some o > > > > ther well respected facility for a second opinion. > > > > > > > > > > love you > > > > Sharon > > > > > > > > This email is a natural hand made product. The > > > slight variations in spellin > > > > g and grammar enhance its individual character and > > > beauty and in no way are > > > > to be considered flaws or defects. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Re: Re: Re: Re: Re: (was) semi > > > dreams (now) songs and memo > > > > ries > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Well,that just makes me feel worse. Lol. > > > I guess it is > > > > > > > > what it is hu? So,there isnt any way to slow down > > > the > > > > === Message Truncated === ________________________________________________________________________________\ ____ Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games. http://sims.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 Oh Cassy, It can't be that!!!! Does that cause MS like symtoms? What do they do for that? Do they know what causes something like that. You'd think someone would be born with something like that. I hope they are wrong and find something else along the way. With you in spirit. Hugs, Peggy > > > > > Wait until you get the FINAL word Cassy. And > then > > > > go to the Mayo or some o > > > > > ther well respected facility for a second > opinion. > > > > > > > > > > > > > love you > > > > > Sharon > > > > > > > > > > This email is a natural hand made product. The > > > > slight variations in spellin > > > > > g and grammar enhance its individual character > and > > > > beauty and in no way are > > > > > to be considered flaws or defects. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Re: Re: Re: Re: Re: (was) > semi > > > > dreams (now) songs and memo > > > > > ries > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Well,that just makes me feel worse. Lol. > > > > I guess it is > > > > > > > > > > what it is hu? So,there isnt any way to slow > down > > > > the > > > > > > === Message Truncated === > > > > > ______________________________________________________________________ ______________ > Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games. > http://sims.yahoo.com/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 Thankyou Peggy! Well,it can be familial. And I guess in some cases cause neurological type problems. There are a few but one is very bad.It is called multiple system atrophy. And another is involving a heart defect,and then a tachycardia. Im still learning. It may not even be this. Im choosing denial for now. Lol. Like they say one day at a time. Thats all we can do,at least me anyway. Lol. Thanks for being a sweetie. I hope your doing well. hugz,cassy --- MSersLife wrote: > Oh Cassy, > > It can't be that!!!! Does that cause MS like symtoms? What do they do > for that? Do they know what causes something like that. You'd think > someone would be born with something like that. > > I hope they are wrong and find something else along the way. With you > in spirit. > > Hugs, > Peggy > > > > > > > > > > > > Wait until you get the FINAL word Cassy. And > > then > > > > > go to the Mayo or some o > > > > > > ther well respected facility for a second === Message Truncated === ________________________________________________________________________________\ ____ Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games. http://sims.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 I am voting for a healthy degree of denial, as this ranges from the largely "fixable" to "Let us not think about that." -- Just know that we are all pulling for you, Cassy, and for , too! Love, n -------------- Original message -------------- Thankyou Peggy! Well,it can be familial. And I guessin some cases cause neurological type problems. Thereare a few but one is very bad.It is called multiplesystem atrophy. And another is involving a heartdefect,and then a tachycardia. Im still learning. Itmay not even be this. Im choosing denial for now. Lol.Like they say one day at a time. Thats all we cando,at least me anyway. Lol. Thanks for being asweetie. I hope your doing well. hugz,cassy--- MSersLife <spazman222verizon (DOT) net>wrote:> Oh Cassy,> > It can't be that!!!! Does that cause MS likesymtoms? What do they do > for that? Do they know what causes something likethat. You'd think > someone would be born with something like that.> > I hope they are wrong and find something else alongthe way. Wit h you > in spirit.> > Hugs,> Peggy> > > > > > > > > > > > Wait until you get the FINAL word Cassy.And> > then> > > > > go to the Mayo or some o> > > > > > ther well respected facility for a second=== Message Truncated === __________________________________________________________Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.http://sims.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
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