Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 Joan , what regiment are you on? When is your last treatment? And most importantly how are you doing ? Deb 33yrold husband Joe, was diagnosed with CC in Sept, resection on Sept 27th 2004 found mets to the abdominal wall lining 3 lymph nodes involved open wound from infection until Jan 2005 Ileostomy reversal Dec 7th 2004 Chemo regiment begun Jan 2005 5fu/levorican/Oxaplatin/ Avastin added Feb 14 2005 (Happy Valentines Calcium Magnesium added for the Tingles Feb 28 2005 Ct Scan done March 23rd 2005 , 16 millimeter cyst like object on liver found April 1 2005 PET scan done awaiting results Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 Joan , what regiment are you on? When is your last treatment? And most importantly how are you doing ? Deb 33yrold husband Joe, was diagnosed with CC in Sept, resection on Sept 27th 2004 found mets to the abdominal wall lining 3 lymph nodes involved open wound from infection until Jan 2005 Ileostomy reversal Dec 7th 2004 Chemo regiment begun Jan 2005 5fu/levorican/Oxaplatin/ Avastin added Feb 14 2005 (Happy Valentines Calcium Magnesium added for the Tingles Feb 28 2005 Ct Scan done March 23rd 2005 , 16 millimeter cyst like object on liver found April 1 2005 PET scan done awaiting results Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 Joan , what regiment are you on? When is your last treatment? And most importantly how are you doing ? Deb 33yrold husband Joe, was diagnosed with CC in Sept, resection on Sept 27th 2004 found mets to the abdominal wall lining 3 lymph nodes involved open wound from infection until Jan 2005 Ileostomy reversal Dec 7th 2004 Chemo regiment begun Jan 2005 5fu/levorican/Oxaplatin/ Avastin added Feb 14 2005 (Happy Valentines Calcium Magnesium added for the Tingles Feb 28 2005 Ct Scan done March 23rd 2005 , 16 millimeter cyst like object on liver found April 1 2005 PET scan done awaiting results Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 Joan - That would have been so much fun! Maybe , I dont know how, but maybe we can find a way to actually meet before I leave for Kuwait. What do you think? I have so much to do I honestly don't know how, but I know I wont be statebound for at least a couple years again, unless these lovely children of mine cause some sort of problem and I need to head back here. HMMMMM.....we will have to think on this one. Take care, Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 Joan OH MY, I am worried about you dear friend. You have so many issues here and you know they are issues for your Dr to address (I tend to trust all of you who have lived with the disease whereas the doctors do not know enough about this disease as it is, so why wouldn't I believe in the answers from those who have it and from many of you who have seen the "top docs" in NS?!?! ... also, I should have added that the dr. who told me this was the disease and not the neurontin was my family dr., who in any other situation, I would believe him first, but this situation is very different ... aaannddd, I didn't tell him enough detail about what is happening, and the episode with my Mom did not happen until the next day), we can only give you our experiences. So I will tell you mine and hope I remember each of your points. The burning feet - this was one of the things I had worst before dx even. Oh it is horrid isnt it? (YES!!!!! ... I'm glad I have read others having it, otherwise, I would not have known what was happening!...that is scary when you have never experienced it ... since I knew that many of you have had it and I had not, I was hoping I was going to get away with not having that part ... wrong!) I do not suffer from this anymore. (Wonderful!!!) It went away with my first aggressive treatment round iwht the prednisone. (I'm going to call my sarc dr. on Monday and tell her I want to start prednisone, I'd like to stop the MTX until the predisone has it under control ... I suppose I'll continue with teh plqaqenil ... I have no idea what the plaquenil is doing, and if it is doing anything at all!!!) It has come back for brief periods of time since then, but always gotten back under control. Now I was during that time also treated with many other drugs of course not just pred. (pred was the only drug initially to control the sarc. though until they added in methotrexate and plaq a few months later). About the falling asleep episodes you are having and dream like states. You say the Dr thinks it is the disease. I would have some questions about this then. IF he thinks this is the disease then what about the disease does he thinks is causing it and what does he propose to do to treat it? Does he think these are absence seizures or something?( (Is there such a thing?) Pure exhaustion? (No, I am not tired and am well rested when these events occur) I mean how is he explaining it to you? What is he saying is happening? And how does he say to treat it? (He is not telling me anything, again, this is my family dr. and he is guessing ... he has told me to tell my neurologist ... he asked me what my neurologist says about all this stuff going on and whether or not the neuorologist is in agreement with switching me to Topomax ... I told my dr. that I have discussed these things with my neuro yet, but that my neuro doesn't say much of anything except, "well, increase your neurontin" and "I am just the middleman here ... you have a sarcoid specialist, etc., etc., ... I told him that I still need a neurologist!!! ... I mean it is "neuro"sarcoidoisis .... jeeeezooey!!!) We have talked before - about neurontin, you know my opinion about this drug. (yes, I do, and it was our discussion that has led me to believe it is probably the neurontin) and I think you are on really high doses of it (for those who don't know, I am on 3,000 mgs of it) and to top it off your symptoms seem to have gotten worse when you switched to the generic form. (yes, they have!...Joe and I were discussing when I got bad ... it was not only when the generic came out, but also the same time I went from 2400 mgs to 3000 mgs) I just do not like neurontin, after several months of experience on the drug, a couple years actually, i learned very well to decipher the effects of this drug on "me" , i know others have very godo experiences with it. I just didnt like it for some of the things that you are complaining about. (did you have these epidisodes, too?...I don't recall you saying that before ... I know it made you very, very tired ... right?) You ask about topomax and you know my opinion about htis drug as well, (LOL besides become anorexic and throwing buttery pretzals out of car windows!), I think this drug is really effective for several things, peripheral neuropathy being one of them. I found this drug much more effective than neurontin. but maybe thats because it was new to my system and so just had an "edge" on the neurontin. if that makes any sense. (yes, I understand ... now, will I have to wein off the neurontin, or can I just go right to the topomax ... if it is the neurontin doing this, and I think it is, I want off it NOW!!! ... and I could use some anorexia for a few months!...all this cellulitis is keeping weight on me, plus if I go on steroids ... well, you know where I'm going with that!) I am really worried about you and these episodes you are having. (Me too!...think about the horrible things that could happen! ... I could have an episode around strangers! ... what do you think the bank teller would do if I told her I wanted 4 Kings!?!?!...or that her sister had boils on her wrist and hand! ... LOL!) HOpefully we will talk later today once I get everyone settled for hte day. (Yes, I am going to get off here and get to my Mom's and get back soon ... talk to you than, sweetie) Take care & hang in there, KIm "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 Joan, My heart goes out to you.....I have not experienced this type of problem so I cannot help you there, but I do know the feeling of despair bad enough to agree to going back on the prednisone! I was like that in April and the Doc put me back on it. He thought he would have a fight on his hands, but I was so sick that I said, I am ready.........go ahead...........please take it easy and talk to your Doctor. There has to be something else they can do. In the meantime, you will be in my thoughts and prayers. SEnding lots of hugs, Darlene NS Co-Owner/Moderator Re: Ear problems MATT (and more to all) All, I am ready for the predisone ... I never thought I'd ever hear myself say that, but I can't take many things any more. These past few weeks have just been a huge mess -- my body pain is so bad that I can't stand it any more ... my head ... oh what a mess my head is! ... my poor mother and I were out on Thursday. She wanted to have a "mom/daughter shopping day" ... like we used to. And aside for the addition of my wheelchair, it started out just fine. We went to Sears ... me in the shoe section for 2 hours, Mom in the clothes section for 2 hours; I found Mom, and she had to sit in the dressing room with me and say "yes" or "no" to the things I was trying on. Since we had several Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2005 Report Share Posted July 9, 2005 Oh Joan, You have the right to have a friends and enjoy even if it ruins a Saturday here and there. You hardly get company, enjoy it when it comes around dear friend! You and Joe can make it up another day, or the next weekend, and sometimes missing each other can be a good thing. Sorry sweety but I had to say something. Take care and love you, Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2005 Report Share Posted July 9, 2005 Oh Joan, You have the right to have a friends and enjoy even if it ruins a Saturday here and there. You hardly get company, enjoy it when it comes around dear friend! You and Joe can make it up another day, or the next weekend, and sometimes missing each other can be a good thing. Sorry sweety but I had to say something. Take care and love you, Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Water, water, everywhere, but is she drinking it? Joan, remember Tracie's advice about hydration. How much water are you drinking?Love, Nursie Poo, Ramblin' Rose Moderator From: pickstands@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: joanDate: Sun, 18 Sep 2005 12:07:41 EDT Dear Joan I am so worried now about you too. why didnt you go to the emergency room? how long did this last? maybe it was a seizure instead? what do i know? my drs do not know what is going on with me either, well i guess they are saying it is both stroke and then seizure as well. please takee cre of yourself and get to your dr, i am worried about you kim Hi Sweetie, I didn't go to the ER because my head was not clear enough to know I should have. My family needs to become more aware of this problem. I am okay now, though ... just the normal no energy that we all hate so badly. I don't know if it was a seizure or stroke, but it lasted all day long, that much I do know ... the "out of it and not aware of my surroundings" part ... at least that is how my father described it. What are we all going to do?...I "think" I could handle having the disease if it weren't for the depression ... it is so bad ... I could be okay one minute ... then, comes the impending doom feeling that lasts for hours and hours and days and days ... this is the worst part for me. Last night, Joe and I went to dinner. I had a great day in heinsight ... I felt pretty normal. Then, Joe stopped at the WaWa ... and I had so little energy, but I didn't want to be away from him during the time he was in the store ... I know that sounds crazy, but you know that is how I get at times ... very, very "needy" and afraid. It was just before this time I felt the depression hit like a bomb went off in my head and the energy zapped out of me. It took everything I had to lift my lead-filled legs to get out of the car and go into the store, but I had to. The last time I felt like this is when my electrolytes got messed up when I became dehydrated a couple of weeks ago. I tried to think what could have caused this, but I don't know ... I've been keeping up with taking all of my meds at the right time. Oh well ... Kim, my dearest friend, I miss you so much ... and I am so, so, so very worried about you. I'm scared for all of us. What a horrific disease this really is. I'm so very sorry that each of you reading this either has the disease or is a caretaker or friend of someone with it. I think I'm beginning to realize that I'll never work again ... but I can't bring myself to call my boss and tell him to terminate me ... I just can't do it... Lots of mail to read ... I pray I have the energy to read it all ... I am so far behind ... I'm sorry dear friends that I have not kept up with all of you ... Deepest love, strongest hugs, and loud prayers to all, Joan~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 The last time I felt like this is when my electrolytes got messed up when I became dehydrated a couple of weeks ago. I tried to think what could have caused this, but I don't know ... I've been keeping up with taking all of my meds at the right time. IT'S BACK!! GET BACK ON THE ROUTINE TO BALANCE THOSE ELECTROLYTES. JELLO, JUICE, ICE TEA, HOT TEA--CAFFEINE FREE, WATER, BANANAS, GATORADE, JUICE BARS--CHICKEN SOUP. jUST BECAUSE YOU GOT IT BACK TO NORMAL ISN'T A SIGN TO STOP TREATING YOURSELF-- IT'S A SIGN THAT SOMETHING IS WORKING TO GET YOU BACK INTO BALANCE--SO KEEP WITH THE PROGRAM. T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 The last time I felt like this is when my electrolytes got messed up when I became dehydrated a couple of weeks ago. I tried to think what could have caused this, but I don't know ... I've been keeping up with taking all of my meds at the right time. IT'S BACK!! GET BACK ON THE ROUTINE TO BALANCE THOSE ELECTROLYTES. JELLO, JUICE, ICE TEA, HOT TEA--CAFFEINE FREE, WATER, BANANAS, GATORADE, JUICE BARS--CHICKEN SOUP. jUST BECAUSE YOU GOT IT BACK TO NORMAL ISN'T A SIGN TO STOP TREATING YOURSELF-- IT'S A SIGN THAT SOMETHING IS WORKING TO GET YOU BACK INTO BALANCE--SO KEEP WITH THE PROGRAM. T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 The last time I felt like this is when my electrolytes got messed up when I became dehydrated a couple of weeks ago. I tried to think what could have caused this, but I don't know ... I've been keeping up with taking all of my meds at the right time. IT'S BACK!! GET BACK ON THE ROUTINE TO BALANCE THOSE ELECTROLYTES. JELLO, JUICE, ICE TEA, HOT TEA--CAFFEINE FREE, WATER, BANANAS, GATORADE, JUICE BARS--CHICKEN SOUP. jUST BECAUSE YOU GOT IT BACK TO NORMAL ISN'T A SIGN TO STOP TREATING YOURSELF-- IT'S A SIGN THAT SOMETHING IS WORKING TO GET YOU BACK INTO BALANCE--SO KEEP WITH THE PROGRAM. T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Can someone explain this to me? The only thing about food any of my drs said to me was my chemo dr when I asked about diet she said if it appealed to me & I could get it down & keep it down to eat it. And she did say drink lots & lots of water. Thanks --- tiodaat@... wrote: > In a message dated 9/19/05 12:21:59 AM Pacific > Daylight Time, > mamadogrose@... writes: > > > > The last time I felt like this is when my > electrolytes got messed up when I > > became dehydrated a couple of weeks ago. I tried > to think what could have > > caused this, but I don't know ... I've been > keeping up with taking all of my > > meds at the right time. > > > IT'S BACK!! GET BACK ON THE ROUTINE TO BALANCE > THOSE ELECTROLYTES. JELLO, > JUICE, ICE TEA, HOT TEA--CAFFEINE FREE, WATER, > BANANAS, GATORADE, JUICE > BARS--CHICKEN SOUP. > jUST BECAUSE YOU GOT IT BACK TO NORMAL ISN'T A SIGN > TO STOP TREATING > YOURSELF-- IT'S A SIGN THAT SOMETHING IS WORKING TO > GET YOU BACK INTO BALANCE--SO KEEP > WITH THE PROGRAM. > > T > grannylunatic@... grannylunaticd@... __________________________________ Yahoo! Mail - PC Magazine Editors' Choice 2005 http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2005 Report Share Posted September 19, 2005 Can someone explain this to me? The only thing about food any of my drs said to me was my chemo dr when I asked about diet she said if it appealed to me & I could get it down & keep it down to eat it. And she did say drink lots & lots of water. Thanks --- tiodaat@... wrote: > In a message dated 9/19/05 12:21:59 AM Pacific > Daylight Time, > mamadogrose@... writes: > > > > The last time I felt like this is when my > electrolytes got messed up when I > > became dehydrated a couple of weeks ago. I tried > to think what could have > > caused this, but I don't know ... I've been > keeping up with taking all of my > > meds at the right time. > > > IT'S BACK!! GET BACK ON THE ROUTINE TO BALANCE > THOSE ELECTROLYTES. JELLO, > JUICE, ICE TEA, HOT TEA--CAFFEINE FREE, WATER, > BANANAS, GATORADE, JUICE > BARS--CHICKEN SOUP. > jUST BECAUSE YOU GOT IT BACK TO NORMAL ISN'T A SIGN > TO STOP TREATING > YOURSELF-- IT'S A SIGN THAT SOMETHING IS WORKING TO > GET YOU BACK INTO BALANCE--SO KEEP > WITH THE PROGRAM. > > T > grannylunatic@... grannylunaticd@... __________________________________ Yahoo! Mail - PC Magazine Editors' Choice 2005 http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 --- Rose mamadogrose@...> wrote: --------------------------------- Marla, in Indiana R.N. renewals are every two years. Mine was due 10/31/05 and it felt so strange to let it go. We no longer have an inactive status to use, so it was either spend money to renew or just let it expire. So I let it expire . . . . .along with my CNM license. Another skirmish won by the sarc monster, but the war rages on! Ramblin' Rose Dear Marla and Rose- I can relate to your situations- i reacently got my counselors renewal bill from the state and even though I know i will most likly not be able to work in the next year I couldnt bear to not pay the bill. I did let my liability insurance lapse because of the high cost and this made me realize How sick i have become-Rose you stated it correctly when u said it was anouther victory for the sarc monster- Matt --------------------------------- Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Joan Date: Mon, 31 Oct 2005 15:20:38 -0800 Joan, I know what you are going through. I have been on Mtx now for over 2 years, and my doc wants to try Remicaid so I can go off the Mtx, but the Insurance denied it,(first time around), and I won't go off the Mtx unless there is something else to use, I do not want to go down the Pred. road again. I miss work allot too. I went to the hosp. the other day to see a friend nurse of mine who has been through hell and back, and is only 48yo. so I went to the birthing unit, and everyone asked if I was coming back, it was so hard to say NO. It was the first time I was up there in two years. It was so very hard, but I know I can't do it, and I don't need to go down hill. I have given it to God, he will decide if and " when " I ever go back to nursing. Take care, it's good to hear from you, I will keep you in my prayers. Blessings, Marla In a message dated 10/21/2005 5:12:44 A.M. Eastern Standard Time, NeuroSarcoid66@... writes: Dear Joan Where have you been hiding? Thanks for the email info. it sounds like a great program. I have never learned how to use it, but will have to start looking around it and trying to figure it out I guess. How are you? What is going on with you? I wrote you a couple times and keep looking for your response. I hope everything is okay with you, its kind of not with me. I've missed you and our Sunday talks so much. Take care, Kim Hi Sweetie and all, I'm so sorry, Kim and Tracie, that I have not yet responded to any e-mails (I saw Tracie's the other day; I haven't yet read yours, Kim). I've been in a bad, trying to cope state ... my sarc dr. said she is taking me off the MTX after 1 year ... I was initially thrilled with this, but also fear it. I've not been on line much at all. I logged on today to send my group at work a note ... Oh, I miss them so much. I pray I can get back to them after I am off the meds. My boss is still holding my job open. I hope you all are doing better, and I am deeply sorry for not reading/responding to any posts/e-mails. Love and health improvements to all, Joan --May the Lord bless us and keep us!May the Lord let his face shine upon us, and be gracious to us!May the Lord look upon us kindly and give us peace! Amen ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Rose, I know that was hard to do, it's to bad they don't have an inactive, because I am teaching, (only 2hrs/2days a week), I renewed mine as active, I do need to keep it active to teach. Not much, but who knows. If you let it go do you have to retake the test if you wanted to have an active license again? My Mom bless her heart wouldn't let hers go for years after she quit working, and she "retired" at 75 and said she renewed until she was 80! Now that is determination!! But you're right, the money could be better used somewhere else, like drugs!! But one thing will never change, once a nurse always a nurse.... ;-) God bless, Marla Marla, in Indiana R.N. renewals are every two years. Mine was due 10/31/05 and it felt so strange to let it go. We no longer have an inactive status to use, so it was either spend money to renew or just let it expire. So I let it expire . . . . .along with my CNM license. Another skirmish won by the sarc monster, but the war rages on! Ramblin' Rose Moderator From: marla Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Joan Date: Mon, 31 Oct 2005 15:20:38 -0800 Joan, I know what you are going through. I have been on Mtx now for over 2 years, and my doc wants to try Remicaid so I can go off the Mtx, but the Insurance denied it,(first time around), and I won't go off the Mtx unless there is something else to use, I do not want to go down the Pred. road again. I miss work allot too. I went to the hosp. the other day to see a friend nurse of mine who has been through hell and back, and is only 48yo. so I went to the birthing unit, and everyone asked if I was coming back, it was so hard to say NO. It was the first time I was up there in two years. It was so very hard, but I know I can't do it, and I don't need to go down hill. I have given it to God, he will decide if and "when" I ever go back to nursing. Take care, it's good to hear from you, I will keep you in my prayers. Blessings, Marla In a message dated 10/21/2005 5:12:44 A.M. Eastern Standard Time, NeuroSarcoid66@... writes: Dear Joan Where have you been hiding? Thanks for the email info. it sounds like a great program. I have never learned how to use it, but will have to start looking around it and trying to figure it out I guess. How are you? What is going on with you? I wrote you a couple times and keep looking for your response. I hope everything is okay with you, its kind of not with me. I've missed you and our Sunday talks so much. Take care, Kim Hi Sweetie and all, I'm so sorry, Kim and Tracie, that I have not yet responded to any e-mails (I saw Tracie's the other day; I haven't yet read yours, Kim). I've been in a bad, trying to cope state ... my sarc dr. said she is taking me off the MTX after 1 year ... I was initially thrilled with this, but also fear it. I've not been on line much at all. I logged on today to send my group at work a note ... Oh, I miss them so much. I pray I can get back to them after I am off the meds. My boss is still holding my job open. I hope you all are doing better, and I am deeply sorry for not reading/responding to any posts/e-mails. Love and health improvements to all, Joan -- May the Lord bless us and keep us! May the Lord let his face shine upon us, and be gracious to us! May the Lord look upon us kindly and give us peace! Amen ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
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