Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi everyone Thanks for your emails - I have been off air for a while due to a few side effects but I now have good news. At its worst my protein was almost 11,000 . Over the last four weeks on chemo it has started to come down although my creatinine has gone up again. Creatinine was down to 200 the week before but went up again o 270 which is about 3.00 approx (I think for all you internationals). My protein has come down to 367 ( yes - I couldn't believe it neither could my neph- he says to exercise caution because we need at least a few more readings but hey! its in the right direction if its correct - he thought there might be a mistake but I guess miracles can happen and I am starting to feel well. I am still on 10mg steroids, 2 kinds of antibiotics, chemotherapy, atenelol and frusemide. I haven't felt this well for a long time although I am still getting bouts of nausea on odd days - no hair fall out though although my eyebrows have almost disappeared. I have been attending hospital on a weekly basis for blood tests but now I have a week's grace and I am back to see my neph in 2 weeks so fingers crossed for the next time. Thank you all for your support Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi everyone Thanks for your emails - I have been off air for a while due to a few side effects but I now have good news. At its worst my protein was almost 11,000 . Over the last four weeks on chemo it has started to come down although my creatinine has gone up again. Creatinine was down to 200 the week before but went up again o 270 which is about 3.00 approx (I think for all you internationals). My protein has come down to 367 ( yes - I couldn't believe it neither could my neph- he says to exercise caution because we need at least a few more readings but hey! its in the right direction if its correct - he thought there might be a mistake but I guess miracles can happen and I am starting to feel well. I am still on 10mg steroids, 2 kinds of antibiotics, chemotherapy, atenelol and frusemide. I haven't felt this well for a long time although I am still getting bouts of nausea on odd days - no hair fall out though although my eyebrows have almost disappeared. I have been attending hospital on a weekly basis for blood tests but now I have a week's grace and I am back to see my neph in 2 weeks so fingers crossed for the next time. Thank you all for your support Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi Jeanie, It is wonderful to read your good news! I am rejoicing with you :-) That is just fantastic that you have been able to get your protein levels down so much. My Nephrologist tends to think that the protein we spill may really have a large part of responsibility in the damage of our kidneys so it is just great yours is down so much. Even more importantly, you are feeling better, and that is a blessing in and of itself! Thanks for sharing the good news and let us know how your treatment is going. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi Jeanie, It is wonderful to read your good news! I am rejoicing with you :-) That is just fantastic that you have been able to get your protein levels down so much. My Nephrologist tends to think that the protein we spill may really have a large part of responsibility in the damage of our kidneys so it is just great yours is down so much. Even more importantly, you are feeling better, and that is a blessing in and of itself! Thanks for sharing the good news and let us know how your treatment is going. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi Jeanie, It is wonderful to read your good news! I am rejoicing with you :-) That is just fantastic that you have been able to get your protein levels down so much. My Nephrologist tends to think that the protein we spill may really have a large part of responsibility in the damage of our kidneys so it is just great yours is down so much. Even more importantly, you are feeling better, and that is a blessing in and of itself! Thanks for sharing the good news and let us know how your treatment is going. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Hi Rita I am on Cyclophosphamide which is used in Leukemia - apparently this drug is supposed to alter your DNA. I have a week off then I am back to see the Neph next week so I can't wait for the next result but I have to try and remain a bit cautious - however fingers crossed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Thanks for your email I just hope the protein stays down. Will keep you all posted. Today though I woke up with the most terrible nausea - it always seems to happen on an empty stomach - has anyone else had that with their medication? I am not sure whehter its the Chemotherapy or if I have excess acid in my stomach? Its just like morning sickness!! Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Thanks for your email I just hope the protein stays down. Will keep you all posted. Today though I woke up with the most terrible nausea - it always seems to happen on an empty stomach - has anyone else had that with their medication? I am not sure whehter its the Chemotherapy or if I have excess acid in my stomach? Its just like morning sickness!! Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Thanks for your email I just hope the protein stays down. Will keep you all posted. Today though I woke up with the most terrible nausea - it always seems to happen on an empty stomach - has anyone else had that with their medication? I am not sure whehter its the Chemotherapy or if I have excess acid in my stomach? Its just like morning sickness!! Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Hi Jeanie, I hope your protein stayed down too! I sometimes have nausea comparable to morning sickness from the Cellcept. I don't know if you are taking that too, but if my memory serves me correctly, nausea is a side effect in somewhere between 20-30% of people who take Cellcept. Your nausea could very well be from the chemo. I hope you feel better! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Hi Jeanie, I hope your protein stayed down too! I sometimes have nausea comparable to morning sickness from the Cellcept. I don't know if you are taking that too, but if my memory serves me correctly, nausea is a side effect in somewhere between 20-30% of people who take Cellcept. Your nausea could very well be from the chemo. I hope you feel better! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Hi Jeanie, I hope your protein stayed down too! I sometimes have nausea comparable to morning sickness from the Cellcept. I don't know if you are taking that too, but if my memory serves me correctly, nausea is a side effect in somewhere between 20-30% of people who take Cellcept. Your nausea could very well be from the chemo. I hope you feel better! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Yes Rita, That does explain the nausea! How bad is it for you? Some days it is really bad for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Yes Rita, That does explain the nausea! How bad is it for you? Some days it is really bad for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Yes Rita, That does explain the nausea! How bad is it for you? Some days it is really bad for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 This is another one on the same chemo as me with her nausea. I just don't understand how I can do so well for 4 days, then tank so badly tonight. How discouraging. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 This is another one on the same chemo as me with her nausea. I just don't understand how I can do so well for 4 days, then tank so badly tonight. How discouraging. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 This is another one on the same chemo as me with her nausea. I just don't understand how I can do so well for 4 days, then tank so badly tonight. How discouraging. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Hi Jeanie, I've had many problems over the years with medications upsetting my stomach. I also would vomit several times a week (and still do) until they finally determined that I have acid reflux. I'm not sure how much of the reflux is due to meds but none the less I currently take Ranitidine and it keeps the " morning sickness " manageable and the acid burn less severe. You may want to check with your Neph, but I also use Rolaids in the morning in order to keep from vomiting. It seems to work about 70% of the time. This may seem silly, but if I can get myself up and move around in the morning at a slower pace, I tend to be less nauseous. As an example, it seems like when I jump out of bed running and do the morning routine of trying to beat the clock to get out of the house for work, (all in high gear) causes more nausea than if I give myself more time and move around at a slower pace. Let me know if you come up with any alternatives, I'd be interested in hearing about them! Connie Re: Re:Update from Jeanie Good News! Thanks for your email I just hope the protein stays down. Will keep you all posted. Today though I woke up with the most terrible nausea - it always seems to happen on an empty stomach - has anyone else had that with their medication? I am not sure whehter its the Chemotherapy or if I have excess acid in my stomach? Its just like morning sickness!! Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Hi Jeanie, I've had many problems over the years with medications upsetting my stomach. I also would vomit several times a week (and still do) until they finally determined that I have acid reflux. I'm not sure how much of the reflux is due to meds but none the less I currently take Ranitidine and it keeps the " morning sickness " manageable and the acid burn less severe. You may want to check with your Neph, but I also use Rolaids in the morning in order to keep from vomiting. It seems to work about 70% of the time. This may seem silly, but if I can get myself up and move around in the morning at a slower pace, I tend to be less nauseous. As an example, it seems like when I jump out of bed running and do the morning routine of trying to beat the clock to get out of the house for work, (all in high gear) causes more nausea than if I give myself more time and move around at a slower pace. Let me know if you come up with any alternatives, I'd be interested in hearing about them! Connie Re: Re:Update from Jeanie Good News! Thanks for your email I just hope the protein stays down. Will keep you all posted. Today though I woke up with the most terrible nausea - it always seems to happen on an empty stomach - has anyone else had that with their medication? I am not sure whehter its the Chemotherapy or if I have excess acid in my stomach? Its just like morning sickness!! Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Hi Jeanie, I've had many problems over the years with medications upsetting my stomach. I also would vomit several times a week (and still do) until they finally determined that I have acid reflux. I'm not sure how much of the reflux is due to meds but none the less I currently take Ranitidine and it keeps the " morning sickness " manageable and the acid burn less severe. You may want to check with your Neph, but I also use Rolaids in the morning in order to keep from vomiting. It seems to work about 70% of the time. This may seem silly, but if I can get myself up and move around in the morning at a slower pace, I tend to be less nauseous. As an example, it seems like when I jump out of bed running and do the morning routine of trying to beat the clock to get out of the house for work, (all in high gear) causes more nausea than if I give myself more time and move around at a slower pace. Let me know if you come up with any alternatives, I'd be interested in hearing about them! Connie Re: Re:Update from Jeanie Good News! Thanks for your email I just hope the protein stays down. Will keep you all posted. Today though I woke up with the most terrible nausea - it always seems to happen on an empty stomach - has anyone else had that with their medication? I am not sure whehter its the Chemotherapy or if I have excess acid in my stomach? Its just like morning sickness!! Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Re: Re:Update from Jeanie Good News! Thanks for your email I just hope the protein stays down. Will keep you all posted. Today though I woke up with the most terrible nausea - it always seems to happen on an empty stomach - has anyone else had that with their medication? I am not sure whehter its the Chemotherapy or if I have excess acid in my stomach? Its just like morning sickness!! Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Re: Re:Update from Jeanie Good News! Thanks for your email I just hope the protein stays down. Will keep you all posted. Today though I woke up with the most terrible nausea - it always seems to happen on an empty stomach - has anyone else had that with their medication? I am not sure whehter its the Chemotherapy or if I have excess acid in my stomach? Its just like morning sickness!! Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Re: Re:Update from Jeanie Good News! Thanks for your email I just hope the protein stays down. Will keep you all posted. Today though I woke up with the most terrible nausea - it always seems to happen on an empty stomach - has anyone else had that with their medication? I am not sure whehter its the Chemotherapy or if I have excess acid in my stomach? Its just like morning sickness!! Jeanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Hi Connie Thanks for your email. As i am taking 11 pills a day at the moment I don't know how another one will affect me so I am taking milk at bedtime and ginger tea in the morning - so far so good but I will still discuss with my neph because I have to list all my symptoms when I see him. Jeanie Quote Link to comment Share on other sites More sharing options...
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