Guest guest Posted April 17, 2002 Report Share Posted April 17, 2002 This is wierd!!!!! I am going on the 29th to have a altra sound on my lower stomach. When I walk, it feels like everything is going to fall out!!!! HA HA Went to my gynocoligist and he said everything looked good and bladder was intack so he wants to do ultra sound. Will let you know what I find out when I get the results. Carol A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2002 Report Share Posted April 17, 2002 Geez Carol, it sounds like we are falling apart piece by piece. LOL You be sure to let us know what you find out. Are you in any pain? I hope not. Keeping you in my thoughts. Good to hear from you. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2002 Report Share Posted April 17, 2002 I am seeing a gastro dr now for some " eroded " areas of my stomach (ulcers). Anyone out there with chronic stomach/intestinal issues either now or as a KID? Thanks. > Re: Carol G update > > >Hi there, Carol G. > >Welcome to my world! I've been taking Cytoxan orally for 1 year >and 11 days. I'd be glad to share my experiences with you, but >let me say that there will be some changes in your life but it is >not as bad as you might think. > >I'm leaving this Sunday for the Mayo Clinic in Rochester. Tests >begin Monday morning at 7:15 a.m. followed by appointments with my >pulmonologist, rheumatologist and ENT Dr. I am hoping that I'll >be able to reduce or totally quit taking the Cytoxan since I'm so >much better than I was a year ago. I'm trying not to get my hopes >up too much since my local doctors aren't that optimistic. But >either way, this stuff works and that's what we want, right? > >I started out with 50 mg of Cytoxan a day for a week, and then >each week we up'd it another 25 mg until we reached 150 mg. After >2 months of that my white blood count went too low and my >neutrophils were off the charts, so Mayo said to lower it to 100 >since I didn't have any inflammation. 100 mg a day hasn't been >too bad. As Sandy said, the fatigue is unrelenting. So plan on >lots of naps. This is a time for you to GIVE YOUR BODY TIME TO >HEAL. I usually wake up early (thanks to the Prednisone) and >exercise because that's when I have more energy. > >My hair thinned out some but not too much. My hairdresser had a >back-up plan just in case I lost it all. I also started juicing >because sometimes I just didn't feel like eating but needed the >nutrition. Juicing really helps with the weight control too. > >Carol, one day in early February I had a strange feeling that kind >of took me by surprise. I thought, " Whoa, what's this? I feel >like myself again. " It had taken 10 months of Cytoxan, but >finally I found me again and have continued to feel better every day. > >I'm so glad you have a doctor who knows that the two of you will >become good friends now that he's treating you. My local doctors >and I are on a first-name basis. It's this simple: I have no >immune system. If I start to feel bad or think I'm catching a >cold I have to call them day or night. The old me could fight off >most bugs, but the Cytoxan me can't. I don't even put it to the >test. I call or just get in the car and drive to their offices. >Since my bronchitis episode in January, I keep a full bottle of a >strong antibiotic (Tequin) on hand just in case. > >Please feel free to email me direct (katdavis@...) or >call me if you'd like/need to talk (). Remember: You >can do this, Carol. You've got to be ready to cuddle that new >baby, right? > >Love you, my friend. > (KC) > >On Wed, 17 Apr 2002 03:23:32 -0400 Carol Giordano > wrote: > > > > > > > > > > >Hello my dear extended family. First, I need a >group hug... Thanks, that makes me feel better already! It's 3:15 >am, and as >usual I can't sleep. > >Now, let me welcome our newest - you are >among the finest group of family members in the world, we are all >here for you. >My update will hopefully answer some of your questions, but don't >think you're >going to end up like me or any one of us. There is not a " typical " >with this >disease, but our experiences will help you formulate your best >defense and help >you know what will be right for you. > >I was diagnosed 3 months ago, have been on various >levels of Pred, my highest, now, is 75, over this past weekend, >and will be at >60 for at least 2 weeks before I pray I can start to taper down, >as I am having >all the worst possible side effects. I have been on Dapsone for >over a month. >These aren't working, as I have had a major progression in disease >activity over >the past few weeks brought on by a simple cold that progressed to >bronchitis/pneumonia, then proceeded to start to play havoc w/ my >face, mouth, >eyes, inner ears, and is starting again in my nose and throat, >basically from my >chest up. It's got me good this time! > >My Dr. and I agree it's time for a more aggressive >approach to stop this monster while we try to determine the >activity/damage and >make sure there's not something else going on here too. Originally we had >discussed adding Methotrexate, but he said it would take too long >to start to >work, and we don't have that time at all. So we're skipping over >the " 2nd line >defense " and going to the front line with the big guns. > >I started my first dose of Cytoxan pills today. I'm >not going to try to deny this is freaking me out. The term " chemo " >drugs has >it's own problem, and the more miserable I feel the more I can see >the potential >problems. I won't complain too much right now, I know all the >possibilities, my >blessed Dr. spent 2 hours with me yesterday talking through it >all, but I need >support from people who know this. My family is shocked that it has come >so far so quickly, and of course they can't know how it feels or what to >do, except cry with me right now, and they are all males, except >my dear Mom, >who is being so strong for me, despite her own failing health. >What's weird about it all, after three months, today was the >first day I realized that when I'm talking about this, I'm talking >about me. >I've started crying at least 10 times today, and of course the >Pred helps that >too. I know I'll get through this, especially with your help, it I >may never >have side effects, I'm trying desperately to be positive. I would >like some >honest feedback about the Cytoxan, though, if you have taken it. I need to >know. > >It frustrates my Dr. that there has not been more >research and clinical trials on this. We talked about the foundation, Dr. >Buckner' s study, although he was hoping she would be doing more now for >treatment,rather than cause. and Dr. Trentham. He is frustrated >that he has to >educate the other specialists he has to deal with for me including >radiologists >who didn't read my MRI thoroughly, to my Neurologist who had never >heard of RP, >and so on. We NEED to get this out to more medical professionals >and the public. >I am not able to be too active right now, but you'd better believe >that I will >be sending those emails when you guys pick the day for mass mailings to >everybody and anybody. I'm upset enough for all of us, especially >for my unborn >first grandchild that I just learned of, who I don't want to ever >have to even >worry about this cRaP! (I'm so excited about the baby - it's the >bright spot in >our lives right now!!) > >I will give you more as I learn more, and I hope >you all do the same. I am thinking of each of you with your >situations, we are >so few, but we each have our special lives and each one of you hold a >special place in my heart. I hope you are in control of this for >yourselves, and >if you feel like you're not, don't wait til it gets worse to do something >about it. I'm not waiting and it's still getting the better of me. >My Dr was >talking to me over the weekend from his home, and he got mad at me when I >told him I didn't want to disturb him at home... you know what he >said? " CALL >ME " . You deserve a Dr like this too. If you don't have one find >one now! This >disease can act and destroy quickly, I, and I'm sure some of the >others are >proof of that. > >Alright, kick me off the soapbox so can get >back on...I love you and I'll be with you in my heart on >Thursday. >I'll try to address each of you over the next >several days, I'd like to catch up with everyone, and You all be >helping me by >reading what is going on as you take care of yourselves and be as happy as >you can possibly be. > >Thanks for listening, Carol G > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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