Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 Barb Henshaw wrote: > > How are you doing? Any better? > Well, I am feeling somewhat better than I was for a while there. Actually me fevers had gotten down to where I was about normal for a while in the morning. Then they went back up again, but not as high as they were before. I think that my trip to Vandy last week for a lymph node biopsy ran me down a bit and that may be what brought the fevers back. They did the biopsy because there were some enlarged lymph nodes on my CAT scan, and I'm still waiting for results on that. I'm hoping to get them tomorrow so my Dr. visit on Tuesday won't be a complete waste of time. I'm seeing one of their infectious disease doctors over there. His name's Dr. Dummer, but he does seem to be the Dr. to see if you've got EBV post tx. He's written a number of papers on the subject, including some of Valtrex for EBV, and I think the Valtrex is helping. When my fevers started dropping it was within the few days after I started on it. I'll report back with the biopsy results when they get them. Pray that it's not lymphoma or something like that! Thanks for asking about me! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2008 Report Share Posted June 1, 2008 Barb Henshaw wrote: > > How are you doing? Any better? > Well, I am feeling somewhat better than I was for a while there. Actually me fevers had gotten down to where I was about normal for a while in the morning. Then they went back up again, but not as high as they were before. I think that my trip to Vandy last week for a lymph node biopsy ran me down a bit and that may be what brought the fevers back. They did the biopsy because there were some enlarged lymph nodes on my CAT scan, and I'm still waiting for results on that. I'm hoping to get them tomorrow so my Dr. visit on Tuesday won't be a complete waste of time. I'm seeing one of their infectious disease doctors over there. His name's Dr. Dummer, but he does seem to be the Dr. to see if you've got EBV post tx. He's written a number of papers on the subject, including some of Valtrex for EBV, and I think the Valtrex is helping. When my fevers started dropping it was within the few days after I started on it. I'll report back with the biopsy results when they get them. Pray that it's not lymphoma or something like that! Thanks for asking about me! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 -----Original Message----- They did the biopsy because there were some enlarged lymph nodes on my CAT scan, Let’s hope your enlarged lymph nodes turn out to be nothing more than a by-product of your EBV infection and that they will return to normal when the infection clears up. Barb in Texas - Together in the Fight.... Whatever it Takes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 -----Original Message----- They did the biopsy because there were some enlarged lymph nodes on my CAT scan, Let’s hope your enlarged lymph nodes turn out to be nothing more than a by-product of your EBV infection and that they will return to normal when the infection clears up. Barb in Texas - Together in the Fight.... Whatever it Takes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Barb Henshaw wrote: > > Hi athan, > > > > Have you heard any further news about your swollen lymph glands? > Yeah, sorry I haven't posted about it yet. I've been pretty busy and trying to get enough rest in my fevered and fatigued state has been hard! They got the results back, but they aren't sure what's going on. I guess there's some proliferation, but it may still just be caused by the virus at this point. The infectious disease doctor did use the term " PTLD " , but said it didn't look like there was lymphoma at this point. Rather confusing really, probably because they aren't really sure themselves, but the general opinion seems to be that whatever it is is pretty mild at this point, and hopefully the reductions in immune suppression will get rid of it. I'm seeing a hematologist on Wednesday, so we'll see what they have to say. They think they've caught it pretty early, (they said I was lucky I got the fevers with it to let us know something was wrong... I guess not everyone does). I am feeling better. My fevers have been lower... nearly normal for most of the morning, then going up to 100 or so in the afternoon. I am still tired though. Thanks for asking! athan > > > **Barb in ****Texas**** - Together in the Fight.... Whatever it Takes!** > > > > > ------------------------------------------------------------------------ > > No virus found in this incoming message. > Checked by AVG. > Version: 7.5.524 / Virus Database: 270.0.0 - Release Date: 6/4/2008 12:00 AM > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2008 Report Share Posted August 24, 2008 Hi athan, I’m sorry to have to ask this, but I’ve been having a hard time keeping up with posts. Did I read that you have developed Lymphoma? How are you? Are you OK? Sorry I’m being so nosey, but wasn’t sure if I read that right or not. Barb in Texas - Together in the Fight.... Whatever it Takes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2008 Report Share Posted August 25, 2008 athan, The chemo for lymphoma is not necessarily as bad as other chemo's. I endured it through 2003, (called CHOP) and although I lost my hair and had no energy, they gave me very good nausea meds (Zofran is my drug of choice) and I still had my appetite etc. It's no picnic, but not nearly as bad as I expected it to be. I had it simultaneously with rituximab (called MabThera here downunder). Hang in there, Penny Y (downunder) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 What were your symptoms of lymphoma. I am so worried my 10 year old will get it from the Remicade? Were you on Remicade. Are there blood tests to cehck for it? Chest x-rays. And, how are you doing after going thry chemo , I hope well as I am sure it was trying time for you. At Your Service, Stevie Lynn Gedgaudas Customer Care Manager Apple Vacations 101 Northwest Point Blvd. Elk Grove Village, IL 60007 sgedgaud@... " Penny T " " Penny T " Sent by: 08/25/2008 05:15 AM Please respond to To < > cc Subject RE: *athan* athan, The chemo for lymphoma is not necessarily as bad as other chemo's. I endured it through 2003, (called CHOP) and although I lost my hair and had no energy, they gave me very good nausea meds (Zofran is my drug of choice) and I still had my appetite etc. It's no picnic, but not nearly as bad as I expected it to be. I had it simultaneously with rituximab (called MabThera here downunder). Hang in there, Penny Y (downunder) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 Stevie Gedgaudas wrote: > > What were your symptoms of lymphoma. > I'm not really sure. Since my lymphoma was caused by Epstein Barr virus, and I had lots of symptoms from that, it's hard to tell for sure which ones were due to the lymphoma and which were due to the virus. Now that I'm over the virus, the symptoms have pretty much all gone away (except for perhaps a little bit of fatigue). I certainly wouldn't have ever suspected I was sick based on how I feel now! > I am so worried my 10 year old will get it from the Remicade? Were you > on Remicade. > No I've never been on remicade. When I was diagnosed I was on Imuran (Azathioprine) and Prograf. Now they've taken me off of the Imuran, and reduced the Prograf to half it's initial dose. As I mentioned before I was especially at risk for this since I hadn't had Epstein Barr virus before. Most people my age have had it (90-95%) and are at lower risk for this form of lymphoma. > Are there blood tests to cehck for it? > I think some blood tests can help point in the direction of lymphoma, but it was a CT scan that really put them on to the track of it, and then it was confirmed with a needle biopsy. I know from all the reading I've done since being diagnosed that some other symptoms can be fever, night sweats, enlarged lymph nodes etc. But it can also be relatively symptom free like it is in me currently. One of the Nurses at Vanderbilt mentioned that I was actually really lucky that I got so sick, because it enabled them to catch it early. > > And, how are you doing after going thry chemo > Actually the treatment I've had so far wasn't technically chemo although it's administered the same way in the chemo infusion clinic. What I had was Rituximab, a monoclonal antibody that attacks the cancer cells. It has very few side effects, and when they do occur it's usually during the infusion. It doesn't make you sick like chemo does, which I was grateful for. I still may have to do chemo though if the next CT scan doesn't show significant improvement. So really I'm feeling pretty good right now. If I didn't know I was sick, I wouldn't know I was sick if you know what I mean! The only thing that's kind of hard is waiting for the next tests to roll around (October 20) to see if there's any improvement. I don't know if any of that helps you at all with your worries about Tyler. I know it's hard enough to try to figure out these questions for oneself, but having it be your child who your worried about makes it doubly hard! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 Stevie Gedgaudas wrote: > > What were your symptoms of lymphoma. > I'm not really sure. Since my lymphoma was caused by Epstein Barr virus, and I had lots of symptoms from that, it's hard to tell for sure which ones were due to the lymphoma and which were due to the virus. Now that I'm over the virus, the symptoms have pretty much all gone away (except for perhaps a little bit of fatigue). I certainly wouldn't have ever suspected I was sick based on how I feel now! > I am so worried my 10 year old will get it from the Remicade? Were you > on Remicade. > No I've never been on remicade. When I was diagnosed I was on Imuran (Azathioprine) and Prograf. Now they've taken me off of the Imuran, and reduced the Prograf to half it's initial dose. As I mentioned before I was especially at risk for this since I hadn't had Epstein Barr virus before. Most people my age have had it (90-95%) and are at lower risk for this form of lymphoma. > Are there blood tests to cehck for it? > I think some blood tests can help point in the direction of lymphoma, but it was a CT scan that really put them on to the track of it, and then it was confirmed with a needle biopsy. I know from all the reading I've done since being diagnosed that some other symptoms can be fever, night sweats, enlarged lymph nodes etc. But it can also be relatively symptom free like it is in me currently. One of the Nurses at Vanderbilt mentioned that I was actually really lucky that I got so sick, because it enabled them to catch it early. > > And, how are you doing after going thry chemo > Actually the treatment I've had so far wasn't technically chemo although it's administered the same way in the chemo infusion clinic. What I had was Rituximab, a monoclonal antibody that attacks the cancer cells. It has very few side effects, and when they do occur it's usually during the infusion. It doesn't make you sick like chemo does, which I was grateful for. I still may have to do chemo though if the next CT scan doesn't show significant improvement. So really I'm feeling pretty good right now. If I didn't know I was sick, I wouldn't know I was sick if you know what I mean! The only thing that's kind of hard is waiting for the next tests to roll around (October 20) to see if there's any improvement. I don't know if any of that helps you at all with your worries about Tyler. I know it's hard enough to try to figure out these questions for oneself, but having it be your child who your worried about makes it doubly hard! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2008 Report Share Posted August 26, 2008 Stevie Gedgaudas wrote: > > What were your symptoms of lymphoma. > I'm not really sure. Since my lymphoma was caused by Epstein Barr virus, and I had lots of symptoms from that, it's hard to tell for sure which ones were due to the lymphoma and which were due to the virus. Now that I'm over the virus, the symptoms have pretty much all gone away (except for perhaps a little bit of fatigue). I certainly wouldn't have ever suspected I was sick based on how I feel now! > I am so worried my 10 year old will get it from the Remicade? Were you > on Remicade. > No I've never been on remicade. When I was diagnosed I was on Imuran (Azathioprine) and Prograf. Now they've taken me off of the Imuran, and reduced the Prograf to half it's initial dose. As I mentioned before I was especially at risk for this since I hadn't had Epstein Barr virus before. Most people my age have had it (90-95%) and are at lower risk for this form of lymphoma. > Are there blood tests to cehck for it? > I think some blood tests can help point in the direction of lymphoma, but it was a CT scan that really put them on to the track of it, and then it was confirmed with a needle biopsy. I know from all the reading I've done since being diagnosed that some other symptoms can be fever, night sweats, enlarged lymph nodes etc. But it can also be relatively symptom free like it is in me currently. One of the Nurses at Vanderbilt mentioned that I was actually really lucky that I got so sick, because it enabled them to catch it early. > > And, how are you doing after going thry chemo > Actually the treatment I've had so far wasn't technically chemo although it's administered the same way in the chemo infusion clinic. What I had was Rituximab, a monoclonal antibody that attacks the cancer cells. It has very few side effects, and when they do occur it's usually during the infusion. It doesn't make you sick like chemo does, which I was grateful for. I still may have to do chemo though if the next CT scan doesn't show significant improvement. So really I'm feeling pretty good right now. If I didn't know I was sick, I wouldn't know I was sick if you know what I mean! The only thing that's kind of hard is waiting for the next tests to roll around (October 20) to see if there's any improvement. I don't know if any of that helps you at all with your worries about Tyler. I know it's hard enough to try to figure out these questions for oneself, but having it be your child who your worried about makes it doubly hard! athan Quote Link to comment Share on other sites More sharing options...
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