jcawork

I just checked, she posted 6/14/05 that she was NED, full body. What the hell is going on? This can't be. Does anyone know what happened or how this can happen in a month? We here scans not NED when she posted her great happy dance post? Jen

Didnt Rachel just have scans that were fine??????????? Jen

Please tell her I am thinking of her every day. Love, Jen

I am meeting w/ my Docs this Friday to discuss oral chemo either alone or in addition to. I know much has been written on the board, but since it wasn't in my court yet, I wasn't paying much attention. I know there is Temodor, Tarceva, Iressa, Avastin and Altima. What other names have I forgot? Whats worked for you? What side effects? Thanks in advance, Jen

Hello everybody, I know I have not posted much. Well, I got a fever last thursday (12 days post chemo)and started to feel pretty terrible. Went in Fri took blood cultures which are so far reading negative (they read each day for 5 days-2 days are neg). Levequin started. Formal CBC at a lab not at the office revealed "toxic Grans as slight" Has anyone ever seen this on a CBC? I was told it means bacteria was in my White blood cells and it means bacterial infection. Also I have no symptoms of anything except fever and fluey feeling. Is this norm? Have usual pneumonitis cough and wheeze, but thats it. Have no idea how I got an infection. Jen

This is the same plan I am on. I get scanned next week to see if its helping. Jen

2 cups of Chicken meat cut in cubes-packaged works fine, but not seasoned-get plain 1 cup Seedless green grapes cut lengthwise 3 stalks of celery cut fine ¼ of a white onion cut fine 4 tablespoons of dry dill 1 tsp on Dijon mustard Helmans Mayo-use no other. @ Tblsp at a time until it’s the consistency you like Fridge for at least 3 hours before you serve Doesn’t do well as a sandwich, serve in tomato boats Jen

Hey Rachel, My guess its good old Arthritis! Sending my best wishes your way. Let us know as soon as you know. Love, Jen

Cindy, I can't believe it. Is there anything he can do to correct this mistake he made? How about pay your bills. Call the Bar Association on him and report him. Easier said then done, I know. I can not believe you went through all of this for his blunder. Love, Jen

Yes, I had some tough side effects. I had WBR, but basically its the same as PCI, just more sessions. Mine was because the inside of my ears were fried. Yes, they shoot the beam in your ears, each side of your head. They canals were very inflamed and I was very dizzy (sea legs), no appeteite and just not right. Very off balance. My other Doc who looked in my ears said, "this hurts to look atits so red ". After much complaining, and I mean much complaining, I was given steroid ear drops for my ears. This helped lot or it was just time for it to get better. Either way, inner ear inflamation is an issue that they just dont bring up. Seems simple enough to deal with. Mine also lasted a few weeks post tx until I got the drops. Feel better I know it sucks. Jen

I got the final read today and as of right now the 2 mets I had are gone and nothing new has grown. I am happy yet cautious. Rescan of head in 60 days. I am still feeling crappy, but have no real idea why. Still very off balance, like sea legs. Docs now wants me to see ENT as they are concerned the WBR did some perm. damage to the inner ear. By my last day of WBR my outside ears, inside ear canals and drums were incredibly red, hot and inflamed. Used steroids drops for a few weeks, but if its the inner ear, these wont hit it. I have been concerne that all of this off balance stuff was due to brain mets, but they tell me its not. Did anyone else have ear issues w/ WBR? Thanks, Jen

I got the final read today and as of right now the 2 mets I had are gone and nothing new has grown. I am happy yet cautious. Rescan of head in 60 days. I am still feeling crappy, but have no real idea why. Still very off balance, like sea legs. Docs now wants me to see ENT as they are concerned the WBR did some perm. damage to the inner ear. By my last day of WBR my outside ears, inside ear canals and drums were incredibly red, hot and inflamed. Used steroids drops for a few weeks, but if its the inner ear, these wont hit it. I have been concerne that all of this off balance stuff was due to brain mets, but they tell me its not. Did anyone else have ear issues w/ WBR? Thanks, Jen

Thanks for the reply. So, you wrote this. Did you publish it? Jen

Hello where did you get this article, you did not site the source. Thanks Jen

Addie, Thanks for the reply. No, I have not had a colonoscopy. I asked and onco and PCP both said MRI and CT would have shown something large enough to cause symptoms. Drinking the barium night before and morning of is to give them good shots of all the bowel loops etc.... Also said polyp etc... tends to do the opposite, constipated and or obstruction. Also dont have Gastro Doc as I have never had any problems before to have one. I was told to do colonocopy at 45. I have friends who have huge bowel issues and tell stories that I can't believe they can even function. So, my Morning only diareaha thing doesnt seem to be alarming to them or my Docs. I know me. I know when something isn't right. In fact, I have actually never been wrong even if it took a year to get an answer (my lc misdiognosed). So, I just feel like they arn't listening. It doesnt have to be a cancer issue as I know we can all still get regular stuff on top of the cancer stuff. This groups listens and its such a diverse group that I thought maybe somebody would write me and say, "Yup, had those symptoms an this is what it is". Still hoping. Jen

Thanks, I have done research and I don't have the symptoms of IBS. Thanks anyway. Jen

I know, it's not a great topic, but I am so tired of this. My Docs have no idea what it is. CT scans w/ barium showed nothing, kidneys, liver, pancreas are okay. It also started a week before I got re-diognosed so its not nerves or being upset. Every morning for 7 weeks now w/o exception I have diareaha. Mostly water, bright yellow. Have not had a solid BM this whole time. Left sided flank pain, hurts more w/ diareaha is happening. Comes and goes the rest of the time. It can go from no pain at all, to screaching pain. On and off low abdominal/pelvic pain in the front. No appetite the whole 7 weeks and this is not like me at all. Nausea on and of not related to chemo. I thought I would go to the experts and see if anyone else has had this or has a clue. I have never had GI/Bowel issues so I have no experience. Thanks for responding if you have some idea. Jen

I know, it's not a great topic, but I am so tired of this. My Docs have no idea what it is and it may not have anything to do w/ the cancer, but I doubt it. CT scans w/ barium showed nothing-MRI of liver/abd/pelvis showed nothing, kidneys, liver, pancreas are okay. It also started a week before I got re-diognosed so its not nerves or being upset. Every morning for 7 weeks now w/o exception I have diareaha(1-5 bouts). Mostly water, bright yellow. Have not had a solid BM this whole time. Left sided flank pain, hurts more w/ diareaha is happening. Comes and goes the rest of the time. It can go from no pain at all, to screaching pain. On and off low abdominal/pelvic pain in the front. No appetite the whole 7 weeks and this is not like me at all. Nausea on and of not related to chemo. I thought I would go to the experts and see if anyone else has had this or has a clue. I have never had GI/Bowel issues so I have no experience. Thanks for responding if you have some idea. Jen

Doughnut and group, Thanks so much for thinking about me. It means a lot having friends out there that understand. I havn't been posting because I feel like I am such a bummer. I have been reading. I don't feel like I have much to offer and I am so sick of myself I hate posting my array of physical complaints. Well, here goes the update: 4/27 Confirmed recurrance May twenty WBR including weekends- Suffered from burnt inner ears that caused a total off balance thing that just ruined each day. Inner ear steroids finally helped. When my onco looked in my ears he said "Ouch! Thats hurts to even look at". They were on fire-both inside and outside. Flank Pain for 5 weeks have no idea what its from. Onco thinks its from the big ovaries (possible mets), Rad. Onco thinks its mechanical and I pulled something.-Been better for one week? 1 week break between WBR and Chemo-not long enough 4 days Topotecan-Did okay,Onco said I was not more energetic because of having WBR right before and they lowered my steroids because I cant sleep on them. Week post chemo-WBC hit the toilet in 2 days 1.4 and only 0.8 granulars-Levequin and start Neupogen which makes me ache so much-5 days post chemo platelets hit 46 and holding there we hope. RBC ok for now. So, I have spent the last 6 weeks, burnt, dizzy, off balance, holding my side from pain, tired, weirded out from chemo, tummy a bit upset, not much appetite, low counts, doing shots and lets not forget that the chemo kicked up my pneumonitis so I am nebulizing ever 4 hours and wheezing. Also bad pollen here in DC. This past Sat. I felt human for the first time in a long time. Sun felt crappy again, today better again and far more active. I am also still depressed. Not that horrible sinking depression when you first here the bad, bad news, but a foating depression where I occasionally think all the worst things, loose hope for a while, feel why bother with any of this and then it passes. The board has had some crappy news lately and I actually loose sleep sometimes from reading it now. Mouse lives close to me and she and I had a similar month as mine in terms of WBR, but she is not doing well and I am very sad about this. Called her and wish I could do something to help her. So there it is. I am hanging in there w/ the help of friends like you. Thank-you again. Jen

Doughnut and group, Thanks so much for thinking about me. It means a lot having friends out there that understand. I havn't been posting because I feel like I am such a bummer. I have been reading. I don't feel like I have much to offer and I am so sick of myself I hate posting my array of physical complaints. Well, here goes the update: 4/27 Confirmed recurrance May twenty WBR including weekends- Suffered from burnt inner ears that caused a total off balance thing that just ruined each day. Inner ear steroids finally helped. When my onco looked in my ears he said "Ouch! Thats hurts to even look at". They were on fire-both inside and outside. Flank Pain for 5 weeks have no idea what its from. Onco thinks its from the big ovaries (possible mets), Rad. Onco thinks its mechanical and I pulled something.-Been better for one week? 1 week break between WBR and Chemo-not long enough 4 days Topotecan-Did okay,Onco said I was not more energetic because of having WBR right before and they lowered my steroids because I cant sleep on them. Week post chemo-WBC hit the toilet in 2 days 1.4 and only 0.8 granulars-Levequin and start Neupogen which makes me ache so much-5 days post chemo platelets hit 46 and holding there we hope. RBC ok for now. So, I have spent the last 6 weeks, burnt, dizzy, off balance, holding my side from pain, tired, weirded out from chemo, tummy a bit upset, not much appetite, low counts, doing shots and lets not forget that the chemo kicked up my pneumonitis so I am nebulizing ever 4 hours and wheezing. Also bad pollen here in DC. This past Sat. I felt human for the first time in a long time. Sun felt crappy again, today better again and far more active. I am also still depressed. Not that horrible sinking depression when you first here the bad, bad news, but a foating depression where I occasionally think all the worst things, loose hope for a while, feel why bother with any of this and then it passes. The board has had some crappy news lately and I actually loose sleep sometimes from reading it now. Mouse lives close to me and she and I had a similar month as mine in terms of WBR, but she is not doing well and I am very sad about this. Called her and wish I could do something to help her. So there it is. I am hanging in there w/ the help of friends like you. Thank-you again. Jen

Doughnut and group, Thanks so much for thinking about me. It means a lot having friends out there that understand. I havn't been posting because I feel like I am such a bummer. I have been reading. I don't feel like I have much to offer and I am so sick of myself I hate posting my array of physical complaints. Well, here goes the update: 4/27 Confirmed recurrance May twenty WBR including weekends- Suffered from burnt inner ears that caused a total off balance thing that just ruined each day. Inner ear steroids finally helped. When my onco looked in my ears he said "Ouch! Thats hurts to even look at". They were on fire-both inside and outside. Flank Pain for 5 weeks have no idea what its from. Onco thinks its from the big ovaries (possible mets), Rad. Onco thinks its mechanical and I pulled something.-Been better for one week? 1 week break between WBR and Chemo-not long enough 4 days Topotecan-Did okay,Onco said I was not more energetic because of having WBR right before and they lowered my steroids because I cant sleep on them. Week post chemo-WBC hit the toilet in 2 days 1.4 and only 0.8 granulars-Levequin and start Neupogen which makes me ache so much-5 days post chemo platelets hit 46 and holding there we hope. RBC ok for now. So, I have spent the last 6 weeks, burnt, dizzy, off balance, holding my side from pain, tired, weirded out from chemo, tummy a bit upset, not much appetite, low counts, doing shots and lets not forget that the chemo kicked up my pneumonitis so I am nebulizing ever 4 hours and wheezing. Also bad pollen here in DC. This past Sat. I felt human for the first time in a long time. Sun felt crappy again, today better again and far more active. I am also still depressed. Not that horrible sinking depression when you first here the bad, bad news, but a foating depression where I occasionally think all the worst things, loose hope for a while, feel why bother with any of this and then it passes. The board has had some crappy news lately and I actually loose sleep sometimes from reading it now. Mouse lives close to me and she and I had a similar month as mine in terms of WBR, but she is not doing well and I am very sad about this. Called her and wish I could do something to help her. So there it is. I am hanging in there w/ the help of friends like you. Thank-you again. Jen

I can't stand it. She was such a support. I still don't understand why she died from her spine met. She will be missed. Jen

I posted asking for feedback, but only one person repsonded. Anybody out there have experience with it? Thanks, Jen

Addie, You have to be kidding. No appolgy needed. No offense ever taken. We are classmates and I have looked to you for strength and guidance. You have been an Angel. I know some people like the posts to be "positive" so we can all keep upbeat. I certianly like the positive ones and hate to read the negative ones, but I post how I feel and I am a question asker from way back to the point where I drive my medical team nuts. I have also had the nurses say "keep them on their toes, only you can control you case as they have hundreds of cases to manage". Unfortunetly for me as a Hospital Administrator, I settle malpractice cases every year. Docs make a lot of mistakes. One of the greatest things the board provides me is real life, real time experience from real patients. Asking my Docs and Nurses is ok, but just not as good as getting it from the horses mouth. When I had the Cisplatin ear issue. I couldnt believe how many other people on the board had the same thing occur. My Doc made me feel "unusual", like it doesnt happen much. Well, it does happen, quite a bit and I had the proof. Addie, I love ya girlfriend. Ya, we deal differently, but so what. Nothing to appologize for keep all that positive energy of yours going beacause I will need to make frequent withdraws to get through this- again. Love, Jen

Hey Addie, Not looking for trouble. You are my only Topo info. Looking to see who else took it and how it was for them. Jen