Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Y'all may remember me singing and dancing over LDN a week ago, And I was doing very well. I am now in what I believe is a MS attack. The disease hasn't been active enough for me to tell, but my balance is gone and I am very weak. Has anyone ever had something like this happen? Such a relapse ... Did they then recover from it? I am still taking the LDN, on time every night and taking my rebif as well. Please some advice! You may write me direct or post. I am at a loss thank you for any help you can offer. Zil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Are you sure you're not coming down with one of the bugs that seem to be going around everywhere? I try to make of point of blaming MS last, and looking for other causes first. I know, kind of a mind game with myself, but I figure if it is a flare-up I'll eventually be certain and in the meantime the idea of coming down with a cold is easier to live with. ----- Original Message ----- From: zillba@... low dose naltrexone Sent: Tuesday, February 10, 2004 9:01 PM Subject: Re: [low dose naltrexone] Help? Y'all may remember me singing and dancing over LDN a week ago, And I was doing very well. I am now in what I believe is a MS attack. The disease hasn't been active enough for me to tell, but my balance is gone and I am very weak. Has anyone ever had something like this happen? Such a relapse ... Did they then recover from it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 Hi Zil I can't seem to direct post you but anyway don't worry this symptom will go away, that is a common occurance with me to get these symptoms I have had this happen for months now off and on. Reg. >From: zillba@... >Reply-low dose naltrexone >low dose naltrexone >Subject: Re: [low dose naltrexone] Help? >Date: Wed, 11 Feb 2004 00:01:46 EST > > Y'all may remember me singing and dancing over LDN a week ago, And >I >was doing very well. I am now in what I believe is a MS attack. The >disease >hasn't been active enough for me to tell, but my balance is gone and I am >very >weak. Has anyone ever had something like this happen? Such a relapse ... >Did >they then recover from it? >I am still taking the LDN, on time every night and taking my rebif as well. >Please some advice! >You may write me direct or post. I am at a loss >thank you for any help you can offer. >Zil _________________________________________________________________ The new MSN 8: smart spam protection and 2 months FREE* http://join.msn.com/?page=features/junkmail http://join.msn.com/?page=dept/bcomm & pgmarket=en-ca & RU=http%3a%2f%2fjoin.msn.com\ %2f%3fpage%3dmisc%2fspecialoffers%26pgmarket%3den-ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 That is not an uncommon reaction. Many MS patients have experienced relapses in a reverse time mode sort of as if the body is healing itself from past damage one occurrence at a time. This starts with the most recent and progresses backward. However, to my knowledge, everyone has recovered. Noland ----- Original Message ----- From: zillba@... low dose naltrexone Sent: Tuesday, February 10, 2004 10:01 PM Subject: Re: [low dose naltrexone] Help? Y'all may remember me singing and dancing over LDN a week ago, And I was doing very well. I am now in what I believe is a MS attack. The disease hasn't been active enough for me to tell, but my balance is gone and I am very weak. Has anyone ever had something like this happen? Such a relapse ... Did they then recover from it? I am still taking the LDN, on time every night and taking my rebif as well. Please some advice! You may write me direct or post. I am at a loss thank you for any help you can offer. Zil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Hi Zill I had the same feeling on Friday and Saturday but I came down with a cold and fever. The symptoms have gone away again. So you may be coming down with something and when that gets better so do you. FlashyKathy ----- Original Message ----- From: zillba@... low dose naltrexone Sent: Wednesday, February 11, 2004 12:01 AM Subject: Re: [low dose naltrexone] Help? Y'all may remember me singing and dancing over LDN a week ago, And I was doing very well. I am now in what I believe is a MS attack. The disease hasn't been active enough for me to tell, but my balance is gone and I am very weak. Has anyone ever had something like this happen? Such a relapse ... Did they then recover from it? I am still taking the LDN, on time every night and taking my rebif as well. Please some advice! You may write me direct or post. I am at a loss thank you for any help you can offer. Zil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2007 Report Share Posted October 30, 2007 Hi Corina, There are 3 types of tests that check for the Philadelphia chromosome in your system. BMA also known as cytogenics. FISH PCR I have listed them in order of sensitivity. The BMA is always done using the bone marrow and looks at 20 cells. The FISH is done on the blood or the bone marrow and looks at 200 cells. The PCR is done on the blood or the bone marrow and looks at 10,000 to 1,000,000 cells. There is not much point in doing a PCR (other than establishing a starting value) until you have reached 0 cells out of 20 with the BMA test. This level of remission is called CCR (complete cytogenic response). At diagnosis time you BMA result was most likely 20/20 cells with the Philadelphia chromosome. By doing a second BMA in December you will be able to see what effect Gleevec has made in your disease. An excellent goal at this stage is to have only 7/20 cells with the Philadelphia chromosome. This is called an MCR (Major Cytogenic Response). Once you have archived CCR (0/20) they then go on to using the PCR test. The FISH test is not used that often these days. The log reduction that they talk about is a mathematical way of reporting the PCR test results. I will try and make it very simple. First, you must have a starting PCR value in order to calculate a log reduction. If you didn't have a PCR test done at diagnosis time (most people don't) then the lab that is doing the PCR test assigns an average value (around 10) for newly diagnosed patients. A 1 log reduction means that your PCR test result was 10 times smaller than the first one. A 2 log reduction means that your PCR test result was 100 times smaller than the first one. A 3 log reduction means that your PCR test result was 1000 times smaller than the first one. And so on. I hope this hasn't confused you more than you already were. Make sure that you ask you doctor for a copy of all your test results. Many times your doctor will say that you are doing great, but you really don't know what that means. Once you have two reports in hand, it is easy to see for yourself how well you are doing. Looking forward to assigning you a number in the Zero Club. All you need is to achieve CCR to gain entrance into this club. Zavie Zavie (age 69) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.2 log reduction Jun/07 3.6 log reduction Sep/07 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem _____ From: [mailto: ] On Behalf Of cori_escontrias Sent: October 30, 2007 12:06 AM Subject: [ ] Help? Hi everyone!! Not new to the group but haven't written anything in a while. A few questions and concerns. What and when does a patient with CML get PCR's done. I was dx in May of 07 and have yet to get a log reduction number. I see my doctor every month and have blood test done every time. My counts are great and having minor side effects. I know that in December I will be getting a bone marrow biospy for the second time. Is that what you guys mean about getting a pcr log reduction. Confused and lost?? If anyone could explain that would be great. This next one is for the ladies! Does anyone have or had problems with their menstrual cycles. From not getting it to not being regular. Before dx, I wasn't getting one ( which resulted in finding out I had cancer) but then after taking meds I started my cycle agian. Now, I am back to not getting one and I get a lot of hot flashes( 28 yrs. old and not PG) Wondering if anyone else has or had problems like this. Any help or advise will be greatly appreciated. Thanks! Corina dx 05/07 Gleevec 400mg Texas, Cancer Care Centers of South Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2007 Report Share Posted October 30, 2007 ciao Corina, Regarding hormonal issues: I am 35 and was on the pill when dxd last March. My hemato said that himself, he would stop the pill while on Gleevec so I did. Of course, when you stop the pill, life changes right there anyway. The week before my periods now feel like a slow death. And I have experienced twice important cramps on the day of ovulation. It seems to get better though. I had asked my hemato what would happen with my periods and had predicted that pretty much anything could happen, some stop having periods, others keep being normal, and others have hemorragy-like periods. Gleevec made no difference for me there, I am regular, around 25 days cycles and normal flow. Did you mention the hot flashes to your doctor? are they night sweats? I believe that this could be a side-effect of Gleevec. I don't know that just having CML stops periods though. The fact that you had no periods before Gleevec must have been related to other health issues? I personally would make sure to get all the answers with a gynecologist. all my best, myriam Myriam (age 35) Montreal, Quebec dxd MAR/24/07 (splenomegaly 17cm,WBC:306,PLT:1203) BMA MAR/28/07 with complications, hematoma (results lost by the lab) Hydrea 1g MAR/24/07 to APR/23/07 (resistance to Hydrea) FISH BCR/ABL ES: 95% (on 200 cells) APR/25/07 Gleevec 400mg since APR/26/07 CHR and CBR(spleen) after 3 weeks of Gleevec FISH BCR/ABL ES: 8% (on 200 cells) JUL/30/07 On Tue, 30 Oct 2007 04:06:15 -0000, " cori_escontrias " <cori_escontrias@...> said: > Hi everyone!! Not new to the group but haven't written anything in a > while. A few questions and concerns. What and when does a patient > with CML get PCR's done. I was dx in May of 07 and have yet to get a > log reduction number. I see my doctor every month and have blood > test done every time. My counts are great and having minor side > effects. I know that in December I will be getting a bone marrow > biospy for the second time. Is that what you guys mean about getting > a pcr log reduction. Confused and lost?? If anyone could explain that > would be great. > This next one is for the ladies! Does anyone have or had > problems with their menstrual cycles. From not getting it to not > being regular. Before dx, I wasn't getting one ( which resulted in > finding out I had cancer) but then after taking meds I started my > cycle agian. Now, I am back to not getting one and I get a lot of hot > flashes( 28 yrs. old and not PG) Wondering if anyone else has or had > problems like this. Any help or advise will be greatly appreciated. > Thanks! > Corina > dx 05/07 > Gleevec 400mg > Texas, > Cancer Care Centers of South Texas > > > > > > Quote Link to comment Share on other sites More sharing options...
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