Guest guest Posted September 22, 2003 Report Share Posted September 22, 2003 It sure is Fun, if nothing else . . . and I certainly are enjoying rediscovering each other after a seven-month hiatus. I know I'm going around with a fool grin most of the time . . .. dawnlizbeth wrote: > > sex, sex is good. i think. seems i remember it that way at any rate...lol. > dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2003 Report Share Posted October 1, 2003 Sooo glad to see you back! Is your body just adjusting to the weight loss maybe (as far as the fatigue)? Hope everything turns out OK with the bradycardia--maybe that's just your heart adjusting to the new you too. I'll let Jane catch you up--my brain fog is bad and three months is longer than I can remember. Welcome back! Kathy Update I'll bet you thought I had dropped off the face of the earth. It feels a little like I have, I've been so out of touch with EVERYONE I know. I have killed 1000's of e-mails from the last couple of months, so am totally out of the loop when it comes to what is going on with all of you. I have gone as long as 3 weeks at a time lately without even turning on the computer. I'll just say that I had been getting more and more tired, sleeping a lot and dragging my wagon around. Even the news from my primary that I am now at a perfect weight and she doesn't want me to lose anymore and to stop thinking in terms of low-calorie and low-fat didn't make me feel better. I knew that my resting pulse was too slow much of the time, but somehow didn't worry about it. I ended up in the hospital last week, admitted through ER, primarily for bradycardia, although at times it would turn into tachycardia. Had lots of tests, with some good news in them (as in my heart valves are no worse than a couple of years ago, etc.), but in the end, no specific reason for the rate problems. So, the cardiologist says I'm heading for a pacemaker. That's ok. People live perfectly well with pacemakers, so that doesn't bother me. In fact, we have an 87-yr-old here in my apt. complex who literally runs with her dog, and she's on her 3rd pacemaker. Jane or Kathy-- can you catch me up on everyone? Thanks. DebPlease visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 Hey Cliff this is great news! Sure go ahead and send the alt. stuff. Only question is how does it effect the chemo if at all. Thanks and YOU ARE SO RIGHT!! All things ARE possible. Prayer and care it's the ticket to it all. Keep believing! and of course Pass it on Hugs and Prayers Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 It does not interfere with chemo according to Doctor Rath. Lately, I have been getting IV's of Vitamin C thru my port. That costs $$$ . Runs $100.00 for almost two hours of the drip. Hope this helps. Take care and God bless. Cliff . . " ALL things re possible. Pass it on. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 chris, i'm so sorry. prayers are being said that his passing is easy and painless. i can only imagine how hard this is on you. hang on to daniel and let him take care of you during this difficult time. my heart and my thoughts are with you right now and i ache for you. christy update This has been a really rotten couple of weeks. After an initialgood recovery, Daddy had a bad reaction to one of the meds he wastaking. That was followed by a steady decline, includingpneumonia. Anyway, they turned off the ventilator about an hourago . . . the docs say it may take him several days to die. I'ma mess. I'll let y'all know as things progress.OwensPlease visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 Oh, Chris! What a rotten thing to happen! I hope he goes quickly. We're here for you and you're in our thoughts and prayers. (((hugs))) Kathy update This has been a really rotten couple of weeks. After an initialgood recovery, Daddy had a bad reaction to one of the meds he wastaking. That was followed by a steady decline, includingpneumonia. Anyway, they turned off the ventilator about an hourago . . . the docs say it may take him several days to die. I'ma mess. I'll let y'all know as things progress.OwensPlease visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 I am so sorry this has happened. You & your family are in my prayers. Hugs, ADVERTISEMENT ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 - Love and Prayers sweetie! Big gentle hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 Dear this is such a hard thing to do, I know. I remember when we took my mom off. Fortunately, she didn't linger long. My thoughts and prayers are with you. Fonda update This has been a really rotten couple of weeks. After an initialgood recovery, Daddy had a bad reaction to one of the meds he wastaking. That was followed by a steady decline, includingpneumonia. Anyway, they turned off the ventilator about an hourago . . . the docs say it may take him several days to die. I'ma mess. I'll let y'all know as things progress.OwensPlease visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 How pretty, . Where did you get the stationary? Re: update I am so sorry this has happened. You & your family are in my prayers. Hugs, ADVERTISEMENT ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 It's from Incredimail. -- Re: update How pretty, . Where did you get the stationary? Re: update I am so sorry this has happened. You & your family are in my prayers. Hugs, ADVERTISEMENT Please visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2003 Report Share Posted November 5, 2003 I'm sorry to hear that . We'll be waiting patiently to hear from you. I hope you're feeling better soon. Christy Update Just to let you know that I am doing poorly and hope to reply to allmail (over 300....) during the next few days. I will also provide a notso good update from my GILots of LovePlease visit our website at:http://ACES_Autoimmune.tripod.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 Hi Ken, Great to hear your good news - hope all goes well w/ your surgery! Sounds like you have a good chance of beating this thing! Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 You go Ken!!!! A great big YAHOO!!!! Thanks for sharing some more upbeat news and yeah, wouldn't it be great to start a new trend. Here's hoping and praying it continues. Fondly, Monika > Hello Everyone, > > I saw the surgeon today and I will be getting surgery after 5 weeks > of radiation. As you may recall, I was dx'd with Stage IV (Rectal) > back in August with two lymph nodes in the abdomen. I am currently > on CPT11/5FU/LV which the doctors think that I've have had an > exceptional response (2 lymph nodes are gone as well as the 2 > immediately around the primary rectal tumor/primary tumor shrunk by > half as well...I had a rectal ultrasound done today). The doctors as > MSKCC are pretty upbeat (for once!) about my prognosis. I asked > about downstaging and they said that once you're a IV you'll always > be a IV (even though if I was dx'd today I would be Stage II or III). > I've seen other positive posts on this board in the past day or so > hopefully we'll start a new trend here. Thinking and praying for > everyone affected by this evil disease. No Surrender! > > Cheers, > Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2003 Report Share Posted December 19, 2003 Just got the results today about the bilirublin. It was 7.6 and is now 5.1 after two weeks and the stent. The alkaline phosphate soared to 894 from 164 and is now 454. My CEA is 47.6 which was 55.1 and my last chemo was August 5th. I realize that some tumors grow and don't express CEA. I am still happy that it went down like 15 %. I was doing the Rath stuff according to the dosage on the bottle, however, someone sent me an e-mail that they got from the company and I realized that I was not taking the correct amount. Increased two of the products. Doing a little of the Budwig stuff now and looking into MPGC and C-Statin ( I already take red yeast rice and Celebrex ) from the Aidan site. We are all different and the shark liver oil of two caps a day inceased my WBC count. Feeling good and will see my onc and go to Roswell next week. For all the newbies ... was diagnosed in 1999 with inoperable liver mets and given a year to live. Hang in there and keep an open mind. Take care and God bless. Cliff . . . " Even a happy life cannot be without a measure of darkness and the word happiness would lose its meaning if it were not balanced by sadness. " . . . C. Jong . . . . . . . . " Life is what happens to us while we are making other plans. " . . Lennon . . " ALL things are possible. Pass it on. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 : Stay positive. I feel the same way. Nick has had a lot of lower back pain,nausea and mucositis ,with more mucus than other matter after chemo. We too,had both C.A.T. & P.E.T. scans with mixed reactions. We had a problem because we wrote about the medicare plans on tap re cancer treatment and said we supported some type of Natonal Health Plan,which of course the medical comm- untity does not want to see. All the insurances more or less follow the same pattern and one wonders if they have an agreement. But if your other half has pain that requires treatment maybe he might ask his onc. or pcp to check out the source. I hope everything goes well and both visits show he has improved. Nick is also onAvastin(a study) which was called veg f short for bevacizumab..when he started he was on Camptosar and it seemed to help the liver mets but then it stopped working. Yet we have a friend who is receiving it and has pancreatic cancer. She told us she was told some have a stabledisease and some a partial response. It is,one of about 6 antibodys that inhibit angiogenisis. So we don't know at this minute if we should laugh or cry. He has had night chills and slight fever, a dry cough and a rash. We went to the dermatoligidst,saw the pcp and now he has 6 bad days after his treatment,like your husband and ten good one then he gets the teatment again. So we look,listen read,and search again and now we take each day as it comes. Since Thanksgiving he lost 32 pounds. He takes a sleeping pill and B/P meds,plus proscar,and cholesterol meds(besides the premeds when he gets chemo) We are blessed because we have family close,we believe in the power of prayer and once we statred sharing our thoughts and problems they didn't seem so big or loom so large. I think the prayers of others help,and from this board we have learned many different things. I wish the best to you both and we will put you in our prayers Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Changes need to be made not just in medicare but in the way insurance in general looks at cancer patients.But simply chanine medicare to take money out of cancer care is wrong(out of any insurance it is wrong. We are supporting a bill-THE QUALITY CANCER CARE PRESERVATION ACT- recently introduced by Congressman NORWOOD a Republican from Gorgia and Congresswoman Capps a Democrat from California(both sides can and often do work together for a common cause) that would change medicare in a way fair to all. It would save both medicare and private insurance companies billions of dollars without cutting the quality of care. Both sponsors are medical professionals and they see both sides/The need for Quality Cancer Care and the need to control costs without cutting patients from receiving benefits. I would venture a guess that a campaign of letters or e-mails to Representatives and Senators in Congress would make them take note that no matter who is the candidate in November,all patients who can will vote and that cumulative vote can have a massive effect on the outcome.It seems that private companies follow mandatory medicare changes and many people just follow the crowd.If every Senator and every Representative actually visited a cancer clinic, a major center where trials are held,and they understood how many millions of people are affected,infants,babies,children,young adults,middle aged and then people like my husband. It is very hard to ask people to stop and drop what they are doing and to send a letter.but little ripples make big waves and big waves bring attention. More people have cancer(in this country)then AIDS ,not true world wide but here it is. There are many drugs used overseas that show great promise,we can all hope and pray that someone will listen to our pleas and do something to bring costs in line. I know there is no single answer,and this is long winded but if all the different states represented in this board(on?) could come up with one conprehensive plan it would make it much simpler. I do understand that In Canada and England and in other places where socialized medicine is the norm there may be delays but I don't think the red tape is as bad there. Thanks for listening. Prayers and hugs Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Changes need to be made not just in medicare but in the way insurance in general looks at cancer patients.But simply chanine medicare to take money out of cancer care is wrong(out of any insurance it is wrong. We are supporting a bill-THE QUALITY CANCER CARE PRESERVATION ACT- recently introduced by Congressman NORWOOD a Republican from Gorgia and Congresswoman Capps a Democrat from California(both sides can and often do work together for a common cause) that would change medicare in a way fair to all. It would save both medicare and private insurance companies billions of dollars without cutting the quality of care. Both sponsors are medical professionals and they see both sides/The need for Quality Cancer Care and the need to control costs without cutting patients from receiving benefits. I would venture a guess that a campaign of letters or e-mails to Representatives and Senators in Congress would make them take note that no matter who is the candidate in November,all patients who can will vote and that cumulative vote can have a massive effect on the outcome.It seems that private companies follow mandatory medicare changes and many people just follow the crowd.If every Senator and every Representative actually visited a cancer clinic, a major center where trials are held,and they understood how many millions of people are affected,infants,babies,children,young adults,middle aged and then people like my husband. It is very hard to ask people to stop and drop what they are doing and to send a letter.but little ripples make big waves and big waves bring attention. More people have cancer(in this country)then AIDS ,not true world wide but here it is. There are many drugs used overseas that show great promise,we can all hope and pray that someone will listen to our pleas and do something to bring costs in line. I know there is no single answer,and this is long winded but if all the different states represented in this board(on?) could come up with one conprehensive plan it would make it much simpler. I do understand that In Canada and England and in other places where socialized medicine is the norm there may be delays but I don't think the red tape is as bad there. Thanks for listening. Prayers and hugs Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Changes need to be made not just in Medicare but in the way insurance in general looks at cancer patients,but simply changineg medicare to take money out of cancer care is wrong(out of any insurance it is wrong. We are supporting a bill-THE QUALITY CANCER CARE PRESERVATION ACT- recently introduced by Congressman NORWOOD a Republican from Gorgia and Congresswoman Capps a Democrat from California(both sides can and often do work together for a common cause) that would change medicare in a way fair to all. It would save both medicare and private insurance companies billions of dollars without cutting the quality of care. Both sponsors are medical professionals and they see both sides/The need for Quality Cancer Care and the need to control costs without cutting patients from receiving benefits. I would venture a guess that a campaign of letters or e-mails to Representatives and Senators in Congress would make them take note that no matter who is the candidate in November,all patients who can will vote and that cumulative vote can have a massive effect on the outcome.It seems that private companies follow mandatory medicare changes and many people just follow the crowd.If every Senator and every Representative actually visited a cancer clinic, a major center where trials are held,and they understood how many millions of people are affected,infants,babies,children,young adults,middle aged and then people like my husband. It is very hard to ask people to stop and drop what they are doing and to send a letter.but little ripples make big waves and big waves bring attention. More people have cancer(in this country)then AIDS ,not true world wide but here it is. There are many drugs used overseas that show great promise,we can all hope and pray that someone will listen to our pleas and do something to bring costs in line. I know there is no single answer,and this is long winded but if all the different states represented in this board(on?) could come up with one conprehensive plan it would make it much simpler. I do understand that In Canada and England and in other places where socialized medicine is the norm there may be delays but I don't think the red tape is as bad there. Thanks for listening. Prayers and hugs Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Changes need to be made not just in Medicare but in the way insurance in general looks at cancer patients,but simply changineg medicare to take money out of cancer care is wrong(out of any insurance it is wrong. We are supporting a bill-THE QUALITY CANCER CARE PRESERVATION ACT- recently introduced by Congressman NORWOOD a Republican from Gorgia and Congresswoman Capps a Democrat from California(both sides can and often do work together for a common cause) that would change medicare in a way fair to all. It would save both medicare and private insurance companies billions of dollars without cutting the quality of care. Both sponsors are medical professionals and they see both sides/The need for Quality Cancer Care and the need to control costs without cutting patients from receiving benefits. I would venture a guess that a campaign of letters or e-mails to Representatives and Senators in Congress would make them take note that no matter who is the candidate in November,all patients who can will vote and that cumulative vote can have a massive effect on the outcome.It seems that private companies follow mandatory medicare changes and many people just follow the crowd.If every Senator and every Representative actually visited a cancer clinic, a major center where trials are held,and they understood how many millions of people are affected,infants,babies,children,young adults,middle aged and then people like my husband. It is very hard to ask people to stop and drop what they are doing and to send a letter.but little ripples make big waves and big waves bring attention. More people have cancer(in this country)then AIDS ,not true world wide but here it is. There are many drugs used overseas that show great promise,we can all hope and pray that someone will listen to our pleas and do something to bring costs in line. I know there is no single answer,and this is long winded but if all the different states represented in this board(on?) could come up with one conprehensive plan it would make it much simpler. I do understand that In Canada and England and in other places where socialized medicine is the norm there may be delays but I don't think the red tape is as bad there. Thanks for listening. Prayers and hugs Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Monika, I so hope you have good news after his tests,I will be thinking of you while we are going through the same this week.Prayers for both of you, > > We've had a rather rough couple of weeks here so I haven't been on > > the board much. I'm so glad to hear a's mom is better and > others > > have had some good news lately.I've come to feel like I " know " many > > of you even though I am unable to respond very often. > > My husband goes for CT scans, etc. again this week. The ones in > Nov. > > were mixed results and I'm more than a little worried about this > one. > > Usually he feels really good during his 2 weeks off chemo but not > > this time. He spiked a fever(dr. couldn't find any obvious reason > for > > the fever) and has been on antibiotics for past 9 days, very weak > and > > generally miserable;also has had considerable pain which he hadn't > > had since shortly after starting the chemo last fall.(pain meds > help > > but he hates taking them especially since he hadn't needed any for > so > > many months).I know many of you have been through this before, I'd > > just like to ask for your thoughts & prayers this week as we go to > > the cancer center again for the tests(tues) and visit with his > > primary onc(wed). I guess I'm just scared,he's the light of my life > > and I can't imagine life without him. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 , I am so sorry to hear about your husband not feeling so good. I know it can be very difficult during this time. My husband last August had a very bad patch, high fever severe pain in stomach and back and was hospitalized so they could figure out what was wrong. Three days later when the fever was down and after a lot of tests they let him go without finding anything new. His symptoms all dissapeared and he felt 100%. During that time he lost a lot of weight and that period lasted for about a month. Since then it happened 2 more times but much shorter. I hope your husband will feel better soon and the tests would show there wasn't any growth. I can tell how much you love your husband , I know how you feel this is really hard. Stay strong and focused and I wish him to feel better very very soon, I will be thinking of you! (Bjarne's wife, he has colon cancer stage IV) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2004 Report Share Posted February 1, 2004 Jane & Nick, Thankyou for your words of encouragement, and you've been through so much yourselves! At least we haven't had a real problems with our health insurance yet, and our family dr(pcp)has been wonderful about doing the referals to the cancer center, etc so we haven't had to deal with the huge expenses unlike many others.In that we are lucky! Every time I come to this board, I realize that I am not alone, and so many have it much worse than I. I've been especially amazed to learn of all the really young people here with cc.I had never realized that people in their 30's(some even younger)were stricken with this horrible disease! Prayers & Blessings > : Stay positive. I feel the same way. Nick has had a lot of lower back > pain,nausea and mucositis ,with more mucus than other matter after chemo. > We too,had both C.A.T. & P.E.T. scans with mixed reactions. We had a problem > because we wrote about the medicare plans on tap re cancer treatment and said > we supported some type of Natonal Health Plan,which of course the medical > comm- > untity does not want to see. All the insurances more or less follow the same > pattern > and one wonders if they have an agreement. But if your other half has pain > that > requires treatment maybe he might ask his onc. or pcp to check out the > source. > I hope everything goes well and both visits show he has improved. Nick is > also > onAvastin(a study) which was called veg f short for bevacizumab..when he > started > he was on Camptosar and it seemed to help the liver mets but then it stopped > working. Yet we have a friend who is receiving it and has pancreatic cancer. > She told > us she was told some have a stabledisease and some a partial response. It > is,one > of about 6 antibodys that inhibit angiogenisis. So we don't know at this > minute if > we should laugh or cry. He has had night chills and slight fever, a dry cough > and a rash. We went to the dermatoligidst,saw the pcp and now he has 6 bad > days after > his treatment,like your husband and ten good one then he gets the teatment > again. > So we look,listen read,and search again and now we take each day as it comes. > Since Thanksgiving he lost 32 pounds. He takes a sleeping pill and B/P > meds,plus > proscar,and cholesterol meds(besides the premeds when he gets chemo) We are > blessed because we have family close,we believe in the power of prayer and > once > we statred sharing our thoughts and problems they didn't seem so big or loom > so large. I think the prayers of others help,and from this board we have > learned many > different things. I wish the best to you both and we will put you in our > prayers Nick & Jane > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 : We will say a few extras for you here in this house tonight. Hang in there. I hear how scared you feel. Try and focus on the here and now, cause it's the only way to go in these situations. I've had many false alarms getting scared about the worst for my mom, so remember, you just don't know until you know. Let us know how it goes. Warm wishes, Laurie > We've had a rather rough couple of weeks here so I haven't been on > the board much. I'm so glad to hear a's mom is better and others > have had some good news lately.I've come to feel like I " know " many > of you even though I am unable to respond very often. > My husband goes for CT scans, etc. again this week. The ones in Nov. > were mixed results and I'm more than a little worried about this one. > Usually he feels really good during his 2 weeks off chemo but not > this time. He spiked a fever(dr. couldn't find any obvious reason for > the fever) and has been on antibiotics for past 9 days, very weak and > generally miserable;also has had considerable pain which he hadn't > had since shortly after starting the chemo last fall.(pain meds help > but he hates taking them especially since he hadn't needed any for so > many months).I know many of you have been through this before, I'd > just like to ask for your thoughts & prayers this week as we go to > the cancer center again for the tests(tues) and visit with his > primary onc(wed). I guess I'm just scared,he's the light of my life > and I can't imagine life without him. > Quote Link to comment Share on other sites More sharing options...
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