Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 Hi , Welcome to Lupies, we a bit nutty at time, but we figure we can always blame it on Fibro or Lupus Fog. My name is Connie and I live in WV. I am a new kid on the block also and these folks are great people. Put up a chair, get your favorite drink and join the conversation anytime you like. Connie newcomer on Cytoxan Hi, My name is Stefanie and I just joined LUPIES. I'm looking forward to getting to know everyone! I am 31, married, and the mother of two beautiful girls, Katelyn (age 7) and (age 5). I was diagnosed with lupus 3 years ago after being monitored for seven years with fibromyalgia. At the time, I couldn't walk, experienced pleurisy and felt like I had Alzheimer's. I stayed away from traditional medicine and fought my way back on my own, or at least I thought I did. Then my kidneys got involved and I gave in to high-dose steroids. I felt like the energizer bunny and couldn't believe I had avoided something that helped me to feel so good! However, a year later the steroids stopped working so well and I began 6 months of monthly Cytoxan. I am now continuing with chemo 1 x every 3 months, supposedly for 1 1/2 years. My kidneys are in remission, and now I am praying for full remission from lupus. In addition, I recently had surgery to remove an ovarian cyst and untangle my ovaries from endometriosis. I am on Lupron injections to put my into temporary menopause and shrink the endometriosis. I would like to know if any one of you has gone through Cytoxan treatment and how it went for you. I am frustrated with the tiredness, swelling, digestive/intestinal problems, and excess weight. When I was doing the monthly treatments, I talked to my doctor about the necessity of the length of the tx and he said, "I think the last 6 months has gone quickly, don't you?" I looked at him in shock and said, "Maybe for you, but not exactly for me." I also thought of him after that first round when I was up all night violently throwing up (I've gotten anti-nausea meds since then) and how he told me he didn't think I'd have any side effects. I am grateful that I am able to take care of my girls and work about 10 hours a week. I'm grateful for my husband doing the shopping and the vacumning. I'm grateful for all the support from family and friends... but I so desire to be well and put this behind me. I'm doing a lot of praying and hope to have a future filled with good health and energy. Thanks so much for hearing my out! I appreciate your time! Stefanie Wilderdyke"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 , I have little knowledge of what you have been through, sweet lady. Did you check all of the links listed on the home page? You might help or answers there. Sorry, I cannot be of more help. Gentle Healing Hugs Connie newcomer on Cytoxan Hi, My name is Stefanie and I just joined LUPIES. I'm looking forward to getting to know everyone! I am 31, married, and the mother of two beautiful girls, Katelyn (age 7) and (age 5). I was diagnosed with lupus 3 years ago after being monitored for seven years with fibromyalgia. At the time, I couldn't walk, experienced pleurisy and felt like I had Alzheimer's. I stayed away from traditional medicine and fought my way back on my own, or at least I thought I did. Then my kidneys got involved and I gave in to high-dose steroids. I felt like the energizer bunny and couldn't believe I had avoided something that helped me to feel so good! However, a year later the steroids stopped working so well and I began 6 months of monthly Cytoxan. I am now continuing with chemo 1 x every 3 months, supposedly for 1 1/2 years. My kidneys are in remission, and now I am praying for full remission from lupus. In addition, I recently had surgery to remove an ovarian cyst and untangle my ovaries from endometriosis. I am on Lupron injections to put my into temporary menopause and shrink the endometriosis. I would like to know if any one of you has gone through Cytoxan treatment and how it went for you. I am frustrated with the tiredness, swelling, digestive/intestinal problems, and excess weight. When I was doing the monthly treatments, I talked to my doctor about the necessity of the length of the tx and he said, "I think the last 6 months has gone quickly, don't you?" I looked at him in shock and said, "Maybe for you, but not exactly for me." I also thought of him after that first round when I was up all night violently throwing up (I've gotten anti-nausea meds since then) and how he told me he didn't think I'd have any side effects. I am grateful that I am able to take care of my girls and work about 10 hours a week. I'm grateful for my husband doing the shopping and the vacumning. I'm grateful for all the support from family and friends... but I so desire to be well and put this behind me. I'm doing a lot of praying and hope to have a future filled with good health and energy. Thanks so much for hearing my out! I appreciate your time! Stefanie Wilderdyke"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 Hi Stefanie: Welcome to the group. My name is Joanna, but everyone calls me Mojo. I am 38 years of age and have been diagnosed with Lupus 16 years ago. I have three great sons (8, almost 6 & 2.5) and a loving husband. When diagnosed, I was immediately diagnosed with Lupus Nephritis and have been on Prednisone, Imuran for the first 4-5 years. Then I went into a lengthily remission. Somewhere down the line I was treated with Leukaren, but otherwise I was fine until last July when my kidneys started to play tricks on me. Finally, after a November biopsy I was hospitalized and started on cytoxan. I will be going for my 4th infusion this Thursday and would love to give you information and advice, but I have a feeling you're way ahead of me. So far my creatinine has gone down nicely. It was 3.8 before my first infusion (it increased from 1.5 in July). Now it has gone down to 1.7. I know I still have a while to go before I finish - my doctor said 6 months and then either he'll keep me on monthly for 3 more months and then start doing it less often, or he'll start cutting down after my 6th infusion. We'll see. Don't be shy and ask questions. I'm sure you'll always get some input. ' Mojo > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 Mojo Thanks, I knew nothing about this and I knew needed some answers. Got love you folks! Connie Re: newcomer on Cytoxan Hi Stefanie:Welcome to the group. My name is Joanna, but everyone calls me Mojo. I am 38years of age and have been diagnosed with Lupus 16 years ago. I have threegreat sons (8, almost 6 & 2.5) and a loving husband. When diagnosed, I wasimmediately diagnosed with Lupus Nephritis and have been on Prednisone,Imuran for the first 4-5 years. Then I went into a lengthily remission.Somewhere down the line I was treated with Leukaren, but otherwise I wasfine until last July when my kidneys started to play tricks on me. Finally,after a November biopsy I was hospitalized and started on cytoxan. I will begoing for my 4th infusion this Thursday and would love to give youinformation and advice, but I have a feeling you're way ahead of me. So farmy creatinine has gone down nicely. It was 3.8 before my first infusion (itincreased from 1.5 in July). Now it has gone down to 1.7. I know I stillhave a while to go before I finish - my doctor said 6 months and then eitherhe'll keep me on monthly for 3 more months and then start doing it lessoften, or he'll start cutting down after my 6th infusion. We'll see.Don't be shy and ask questions. I'm sure you'll always get some input. 'Mojo>"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 Hi welcome to this wild bunch of crazies. They are great. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 Hi , I have only been with the group for a few months now. I have fibromyalgia and my sister has lupus. It's strange, but none of my blood work has ever come back with anything pointing to lupus, but some days when I am reading e-mails my husband and I are shocked at how many of the symptoms people are describing I have. Anyway, I know a couple of the people here have done or are having the treatments you are talking about, so you should get some answers quickly! a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 Hi , I have only been with the group for a few months now. I have fibromyalgia and my sister has lupus. It's strange, but none of my blood work has ever come back with anything pointing to lupus, but some days when I am reading e-mails my husband and I are shocked at how many of the symptoms people are describing I have. Anyway, I know a couple of the people here have done or are having the treatments you are talking about, so you should get some answers quickly! a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2003 Report Share Posted February 9, 2003 Hi Stefanie, Welcome to the group. This is Mukund from India. I'm a 27 year Male and I was diagnosed with lupus nephritis in 1992. I had acute renal failure and was on haemodialysis for quite sometime. I was put on Cyclophosphamide (Cytoxan) for 6 months and slowly my kidneys started reviving a bit. I've been having trouble with my kidneys eversince over the past ten years. Since July 2001, the kidneys started troubling me once again and a kidney biopsy revealed that I was losing a lot of protein in my urine. I was put on Leukeran for about 6 months but it did nothing except burn a big hole in my pocket. Since August 2002, I have been put on Cyclophosphamide once again and I've completed 5 infusions. I'm due for my 6th infusion this Wednesday. My nephrologist now tells me that he may continue the infusions for one more year with a frequency of 3 months each. As for side effects, the vomitting and nausea are pretty bad and I've been put on very high doses of Cyclophosphamide that the anit-nausea, anti-vomitting drugs don't seem to have any effect at all. In fact the vomitting and nausea continue for atleast 2 days after the infusion. And ofcourse there's quite a bit of hair loss. But the hair does grow back after the infusions are stopped. Small consolation, I guess!! Feel free to ask any question you have and someone or the other in the group will have an answer. Mukund newcomer on CytoxanHi,My name is Stefanie and I just joined LUPIES. I'm looking forward to getting to know everyone!I am 31, married, and the mother of two beautiful girls, Katelyn (age 7) and (age 5). I was diagnosed with lupus 3 years ago after being monitored for seven years with fibromyalgia. At the time, I couldn't walk, experienced pleurisy and felt like I had Alzheimer's. I stayed away from traditional medicine and fought my way back on my own, or at least I thought I did. Then my kidneys got involved and I gave in to high-dose steroids. I felt like the energizer bunny and couldn't believe I had avoided something that helped me to feel so good! However, a year later the steroids stopped working so well and I began 6 months of monthly Cytoxan. I am now continuing with chemo 1 x every 3 months, supposedly for 1 1/2 years. My kidneys are in remission, and now I am praying for full remission from lupus.In addition, I recently had surgery to remove an ovarian cyst and untangle my ovaries from endometriosis. I am on Lupron injections to put my into temporary menopause and shrink the endometriosis.I would like to know if any one of you has gone through Cytoxan treatment and how it went for you. I am frustrated with the tiredness, swelling, digestive/intestinal problems, and excess weight. When I was doing the monthly treatments, I talked to my doctor about the necessity of the length of the tx and he said, "I think the last 6 months has gone quickly, don't you?" I looked at him in shock and said, "Maybe for you, but not exactly for me." I also thought of him after that first round when I was up all night violently throwing up (I've gotten anti-nausea meds since then) and how he told me he didn't think I'd have any side effects.I am grateful that I am able to take care of my girls and work about 10 hours a week. I'm grateful for my husband doing the shopping and the vacumning. I'm grateful for all the support from family and friends... but I so desire to be well and put this behind me. I'm doing a lot of praying and hope to have a future filled with good health and energy.Thanks so much for hearing my out! I appreciate your time!Stefanie Wilderdyke Catch all the cricket action. Download Yahoo! Score tracker Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2003 Report Share Posted February 12, 2003 Thanks Stefanie: I've been lucky. I have not been experiencing any problems with digestive system this way. I get the nausea and they give me a drip prior to cytoxan. I think it's mainly due to my diet which is incredibly healthy and very rich in high fiber foods. I've been on the heavy side majority of my life and it got pretty bad (not extremely bad) when I was on Prednisone years ago. I could not control the weight, and even after getting off Prednisone, I could not get back to something that would feel comfortable to me. After my second pregnancy I started to hate myself and would refuse to look in a mirror (this was all brought on by trying to buy a nice dress for the christening) and decided it was time to do something about it. I joined Weight Watchers, have lost 22 pounds, got pregnant, had another baby and was able to get back to size 8 within 6 months. Now, being back on Prednison, I promised myself I will not give in without a fight. I've been able to keep this weight for the last 4 years and I'm happy with it, so I've put even more effort into eating the right stuff. It has worked, I lost another 4 pounds. Now, my face is a different story, it looks like I gained a hundred, but there is nothing I can do about that. I do have a question - so far I have not lost my hair. There's definitely less, but it's still there. I know Mukund has lost all of his, and when I asked the oncology nurses they said sometimes you do, sometimes you don't loose your hair. What is your experience with that? MOJO > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2003 Report Share Posted February 14, 2003 Hi Stefanie, Boy ... did i relate to how the doctors think everything is fine and time is passing quickly ... duh ... my days are sooooo long!! I have been in this house for about 3 months now. My husband has to do all the shopping, vacumming and the laundry. I'm glad the kids are " up and grown " so I can now rest when I need to! Seems like us mothers just try to keep on going ... no matter how we feel. I had a heart attack in 1999, and then last November they finally took an mri of my brain... it showed that i have had several small strokes ... my last bout has been with kidney infections, ... and pain, pain, pain...... i think i'm going to try the " 3-day pain medication " like one of the moderators told us about. The placqunil i was on was damaging my liver (also have NASH) ... i kept trying to tell them .... so after my liver engymes continuing to rocket up... as did my weight ... they finally took me off and i am " trying to do everything i can to get better " . I too am " praying " that the lupus will go into remission and I can " get on with my life " ... I have prayed for you today, and hope that you are feeling better and are " pain free " !!! Sincere prayers for you and your family!! Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2003 Report Share Posted February 14, 2003 Hi Stefanie, Boy ... did i relate to how the doctors think everything is fine and time is passing quickly ... duh ... my days are sooooo long!! I have been in this house for about 3 months now. My husband has to do all the shopping, vacumming and the laundry. I'm glad the kids are " up and grown " so I can now rest when I need to! Seems like us mothers just try to keep on going ... no matter how we feel. I had a heart attack in 1999, and then last November they finally took an mri of my brain... it showed that i have had several small strokes ... my last bout has been with kidney infections, ... and pain, pain, pain...... i think i'm going to try the " 3-day pain medication " like one of the moderators told us about. The placqunil i was on was damaging my liver (also have NASH) ... i kept trying to tell them .... so after my liver engymes continuing to rocket up... as did my weight ... they finally took me off and i am " trying to do everything i can to get better " . I too am " praying " that the lupus will go into remission and I can " get on with my life " ... I have prayed for you today, and hope that you are feeling better and are " pain free " !!! Sincere prayers for you and your family!! Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2003 Report Share Posted February 14, 2003 Hi Stefanie, Boy ... did i relate to how the doctors think everything is fine and time is passing quickly ... duh ... my days are sooooo long!! I have been in this house for about 3 months now. My husband has to do all the shopping, vacumming and the laundry. I'm glad the kids are " up and grown " so I can now rest when I need to! Seems like us mothers just try to keep on going ... no matter how we feel. I had a heart attack in 1999, and then last November they finally took an mri of my brain... it showed that i have had several small strokes ... my last bout has been with kidney infections, ... and pain, pain, pain...... i think i'm going to try the " 3-day pain medication " like one of the moderators told us about. The placqunil i was on was damaging my liver (also have NASH) ... i kept trying to tell them .... so after my liver engymes continuing to rocket up... as did my weight ... they finally took me off and i am " trying to do everything i can to get better " . I too am " praying " that the lupus will go into remission and I can " get on with my life " ... I have prayed for you today, and hope that you are feeling better and are " pain free " !!! Sincere prayers for you and your family!! Joyce Quote Link to comment Share on other sites More sharing options...
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