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Medical Forum / Diseases and Disorders / Cancer / February 2006Roll Call - Reach out for support
or tell us your news. CHY? woods? Araik? and so many others we haven't had an update from. Even if you've recently posted to someone else, please join the roll call. If you want to attract attention from others with same cancer, please put it in the subject line (beside the words "Roll Call") This is also for breast and prostate (endstage/advanced) patients, caregivers, family, friends. (the others can /do roll calls on their newsgroups). J > or tell us your news. CHY? woods? Araik? and so many others we haven't > had an update from. At this point in Araik's and CHY's progress, they probably aren't feeling much like doing anything at all. I didn't even watch TV, much less use my computer during the last few weeks of and the sixweeks or so after my treatments. Sometimes I talk down the actual amount of pain involved in NPT irradiation. I believe in suggestibility so I didn't want to make it worse. But by now they know what I went through and they have my deepest sympathy and hope. And importantly, we know it doesn't stop for some time after the radiation ends. I too would love to hear that Araik and CHY are on the mend, but I know that I must be patient. Araik should be there soon. He is probably focusing a lot of his energy at this point on getting his six cans of fluid down his tube each day. It is amazing how much of your day is spent on that task. And CHY should be getting to the home stretch of the radiation proper if my count is right. At this point he is probably cursing me for not telling him to run away, but when it is all over and they recover they will find the trip was worth the all the pain. > I too would love to hear that Araik and CHY are on the mend, but I know that > I must be patient. Araik should be there soon. He is probably focusing a [quoted text clipped - 4 lines] > to run away, but when it is all over and they recover they will find the > trip was worth the all the pain. Thanks for reminder, Chris and yes, I hear you. Some here may not have seen it, but we (madiba, Steph and I and eventually you) trudged lightly with Araik, when he first came to sci.med.diseases.cancer so as to not scare him off treatment, and I'm so very proud of his progress. And so it goes; hopefully Araik, you and clifto will be here later, for CHY, since he's having a longer treatment plan..and to me, patience, patience.... J > And CHY should be getting to the home stretch of the radiation proper if my > count is right. At this point he is probably cursing me for not telling him > to run away, but when it is all over and they recover they will find the > trip was worth the all the pain. Oo-rah. I couldn't have said that better.  SignatureHillary Clinton lambasted the 24-hour delay between the Cheney hunting accident and his notifying the press. If asked why it took her 6 DAYS to notify anyone about Vince Foster's suicide note, she'd say, "That's different, it took a long time to forge that note convincingly." Bonnie recently underwent SIRT (Selective Internal Radiation Therapy) at University of Maryland Hospital for the recurrent liver mets from her gall bladder cancer. The first treatment was December 22. Her January 13 scan showed a 60% reduction in tumor activity. She had the treatment on her left lobe January 31. The scan will be February 23. We knew even before the Jan 13 scan that there had been major good effects, because Bonnie felt better than she had in over a year. We'll meet with the doctors after the next scan and decide where we go from there, depending on the results. There are apparently a number of tools that they have available to manage the disease and prolong useful life. Jeff > or tell us your news. CHY? woods? Araik? and so many others we haven't > had an update from. Even if you've recently posted to someone else, please [quoted text clipped - 5 lines] > (the others can /do roll calls on their newsgroups). > J > Bonnie recently underwent SIRT (Selective Internal Radiation Therapy) > at University of Maryland Hospital for the recurrent liver mets from [quoted text clipped - 7 lines] > tools that they have available to manage the disease and prolong useful > life. You and Bonnie (and the treatment team) are writing the book on gallbladder cancer management. Good to hear how well things are going, Jeff. Hugs to you and Bonnie, Keep in touch and let us know. J Seems to be the case. She is the first with liver mets from gallbladder to be treated at UMMS with the SIRspheres. They had to sell it to the insurance company, but it apparently wasn't difficult, even though it's an off-label treatment. If nothing else, we've made it a bit easier for the next person with a similar problem, by creating a precedent. (never wanted to run for precedent) Thanks for the good wishes. We're blazing trails through virgin forest it seems. It's nice to have a good team working with us. This is a great bunch at the University. I would recommend them to anyone. Jeff > You and Bonnie (and the treatment team) are writing the book on gallbladder > cancer management. > J > Seems to be the case. She is the first with liver mets from > gallbladder to be treated at UMMS with the SIRspheres. They had to > sell it to the insurance company, but it apparently wasn't difficult, > even though it's an off-label treatment. If nothing else, we've made > it a bit easier for the next person with a similar problem, by creating > a precedent. (never wanted to run for precedent) I understand, Jeff. > Thanks for the good wishes. We're blazing trails through virgin forest > it seems. It's nice to have a good team working with us. This is a > great bunch at the University. I would recommend them to anyone. And it will be archived, if anyone (into the future) is searching. So thanks for that, Jeff. J Hi J, Doing okay so far. Having some issues with walking and sitting so long in the car during this trip. All in all, I can't complain as so far so good! Will be back home before my next visit with the onc on March 21st. Will keep trying to pop in here once in a while from the road. Carlsbad Caverns in New Mexico were amazing! Have posted some more pics if you want to take a look. How's things with you? ((HUGS)) You are always helping others but not to often do we hear how you are. :) Penny > Doing okay so far. Having some issues with walking and sitting so long > in the car during this trip. All in all, I can't complain as so far so [quoted text clipped - 6 lines] > Carlsbad Caverns in New Mexico were amazing! Have posted some more pics > if you want to take a look. Thanks for update, Penny. I'm just reading your blog. So you met a couple of aliens from Ontario, eh? (funny the way one sentence follows the other). heehee. Checking photos now. Thanks for the hugs and hugs back, penny. J-keeping it short for you. Ken is doing great. Last MRI and blood work was clear. Next MRI is March 2nd, blood work is mid-March. The onc thinks if these next two tests are clear, Ken's blood work can be spaced out from the current every 6 weeks to something on a longer time frame. Maryanne > Ken is doing great. Last MRI and blood work was clear. Next MRI is March > 2nd, blood work is mid-March. > > The onc thinks if these next two tests are clear, Ken's blood work can > be spaced out from the current every 6 weeks to something on a longer > time frame. thanks for answering the roll call, maryanne. Fingers crossed for a clear scan in March Good to hear that his bloodwork will be spaced further out. Many hugs J > or tell us your news. CHY? woods? Araik? and so many others we haven't > had an update from. Even if you've recently posted to someone else, please [quoted text clipped - 5 lines] > (the others can /do roll calls on their newsgroups). > J I'm still around. I lurk a lot, post rarely. It is still VERY tough for me. I lost my Dad last July and miss him every day (we were close). But life also goes on too with many joys and a few sorrows. Such is life. I might not post much, but I think of many of you, follow your sagas, and wish you all well. Mel > I'm still around. I lurk a lot, post rarely. It is still VERY tough for me. > I lost my Dad last July and miss him every day (we were close). But life > also goes on too with many joys and a few sorrows. Such is life. Thanks for joining the roll call, Mel. I hope you find comfort in reading the thread "she's gone". Very kind replies there, which help me, when thinking of my Dad. Peace. J >or tell us your news. CHY? woods? Araik? and so many others we haven't >had an update from. Even if you've recently posted to someone else, please [quoted text clipped - 5 lines] >(the others can /do roll calls on their newsgroups). >J Just received my latest CT scan Yesterday all is still clear. I am still amazed at all the courageous people here. I can remember my first DX of Stage 4 Lung cancer to my final DX of NHL to remission. My ONC said he will do one more 6 month CT then it will have to be yearly he is tired of seeing me. I am excited at the thought of not drinking that lighter fluid. I pray all here remain in good spirits and remember to keep up the good fight. Frank (aka) "Stew" [ CCKMA] Cancer Can Kiss My a.s. > Just received my latest CT scan Yesterday all is still clear. > I am still amazed at all the courageous people here. I can remember my > first DX of Stage 4 Lung cancer to my final DX of NHL to remission. My > ONC said he will do one more 6 month CT then it will have to be yearly > he is tired of seeing me. LOL and thanks for the continuing good news, Frank. J > I am excited at the thought of not drinking that lighter fluid. > Frank (aka) "Stew" [ CCKMA] Cancer Can Kiss My a.s. > Just received my latest CT scan Yesterday all is still clear. > I am still amazed at all the courageous people here. I can remember my [quoted text clipped - 4 lines] > remember to keep up the good fight. > Frank (aka) "Stew" [ CCKMA] Cancer Can Kiss My a.s. Good to hear the good news. What did you do to celebrate? My last NED I got a dish of Ice Cream at a yuppie Ice Cream Boutique. SignatureSo many fools, so few comets. Bob in Carmel, CA >> Just received my latest CT scan Yesterday all is still clear. >> I am still amazed at all the courageous people here. I can remember my [quoted text clipped - 7 lines] >Good to hear the good news. What did you do to celebrate? My last NED I >got a dish of Ice Cream at a yuppie Ice Cream Boutique. We went to our favourite restaurant for dinner, and bought the dogs a couple plain burgers from their favourite place. Frank (aka) "Stew" [CCKMA] Cancer Can Kiss My a.s >>> Just received my latest CT scan Yesterday all is still clear. >>> I am still amazed at all the courageous people here. I can remember [quoted text clipped - 12 lines] > > Frank (aka) "Stew" [CCKMA] Cancer Can Kiss My a.s I like your attitude!! LMAO Penny Hi, it's me, Maria..... I've been silently lurking for some time as I was recovering from surgery. So here's my background: - Diagnosed with colorectal cancer - August 2005 - Radiation with continuous chemotherapy - October - November 2005 - Surgery - January 2006 (cancer was staged as stage III (T3N1M0); 2 of the 32 lymph nodes had cancer); - I now have a temporary ileostomy which will be reversed when I'm done with my adjuvant chemotherapy - Chemotherapy (5-FU and Leocovorin) - February (I will start next week) Although I have been silent, I have always looked to this newsgroup for a lot of information. And for those times that I needed specific answers, I had posted and received prompt reply from the experts here. The support this ng provides is awesome --- both medical and personal support. I want to commend J for keeping this ng together --- she's been the glue that keeps everything intact. Maria > Hi, it's me, Maria..... I've been silently lurking for some time as I > was recovering from surgery. So here's my background: [quoted text clipped - 7 lines] > - Chemotherapy (5-FU and Leocovorin) - February (I will start next > week) hello Maria, I'm so pleased to hear from you. You've been so quiet since January. > Although I have been silent, I have always looked to this newsgroup for > a lot of information. And for those times that I needed specific > answers, I had posted and received prompt reply from the experts here. > The support this ng provides is awesome --- both medical and personal > support. I want to commend J for keeping this ng together --- she's > been the glue that keeps everything intact. Thanks Maria. If there's ever a topic you want posted about, let me know. I have some saved or I can find almost anything you wish to read or discuss (within the boundaries of the Charter - else I'd have to report myself <giggle> Good luck with the 5FU and leucovorin - sounds fairly reasonable to tolerate and soon you'll have the ileo reversal and will be coming here to report to us about how well things are going. :) Don't be a stranger and if there's ever anything (question, input), do post. Hugs J > or tell us your news. CHY? woods? Araik? and so many others we haven't > had an update from. Even if you've recently posted to someone else, please [quoted text clipped - 5 lines] > (the others can /do roll calls on their newsgroups). > J Hello all, I'm doing fine, was diagnosed with stage 3 CRC in April 2004, had a resection & Adjuvent Chemotherapy (5FU & Follic Acid) for 30 weeks between June 2004 & February 2005, got the all clear in March 2005. September 2005 Polyps found & removed in October 2005 (bit of a scare) which tested to be cancer free. It's at about that time that I stopped waiting for recurrence & started believing that maybe I am going to remain cancer free. I'm now on 6 monthly check ups (previously 3 monthly) for bloods & Colonoscopy/Sigmoidoscopy, 12 monthly for CT Scan. If anyone is taking a similar route i'd be happy to de-lurk & share my experience. Thanks to you all for making this mailing list a caring & informative place, it has been a great help to me & I'm sure to many others. Keep up the good work. Alan. > or tell us your news. CHY? woods? Araik? and so many others we haven't > had an update from. Even if you've recently posted to someone else, please [quoted text clipped - 5 lines] > (the others can /do roll calls on their newsgroups). > J Hello, hello, I am here and I am casting my ballot for life. So, to round up my just posted posts: Araik Margarian. 48 years old 14 years of immigrant from Armena. Diagnosed to Nasopharingeal carcinoma from mid June to mid October on 2005. Got 40 RT 72Gu on nasopharynx and both sides of neck nodes and 3 round of Cisplatin based chemo from November 28 2005 to February 6 2006. Currently, exclusively feeding myself by G-tube; mucosities/thrush/sore throat/ teeth /nausea/vomiting. substantial hearing loss, dry mouth. Plus, by the last MRI, the Cancer is there :) :( SignatureRegards, Araik Margarian. http://journals.aol.com/aramargar1/MyAmericanDream/ > Hello, hello, > I am here and I am casting my ballot for life. [quoted text clipped - 10 lines] > substantial hearing loss, dry mouth. Plus, by the last MRI, the Cancer is > there :) :( hello, hello, Araik. Thank you for answering the roll call and summarizing your situation. Hopefully, we'll hear from Steph soon. One poster here, his wife was scanned every few months (after intense chemo and radiation) to observe if the tumour continued to shrink and was finally given the all clear, so it might be too early to draw conclusions. Keep that positive spirit going, Araik. J Head-Neck/Spouse Bob is starting today week five of his first 6 weeks of chemo; he's enrolled in a clinical trial for Cetuximab. We were thrilled to read the news posted here (?) and in the 2/9 New England Journal of Medicine reporting good results in Cetuximab's effectiveness against squamous cell carcinoma without, they believe, increasing (my biggest worry with the side effects) the impact of the 7 weeks' radiation. Bob is Stage III. He has his first biopsy on March 7, since starting chemo, and two weeks after that starts his "walk through fire" -- the 7 weeks of combined radiation and chemotherapy. He has done better so far than I anticipated -- I am in awe of his spirit and kindness with me. The tumor is still there but has shrunk, they believe, and we'll find out more on the 7th. Thank God we have accumulated sick time and that I can do much of my work from home, because I know, as J points out, I will be there with him through the "six cans a day." I worry constantly (and mostly silently) about every little thing but pin my thoughts on hope and love. > Head-Neck/Spouse > [quoted text clipped - 14 lines] > mostly silently) about every little thing but pin my thoughts on hope > and love. Hello and welcome. Gosh am I confused. On the other newsgroup, you said that your husband is on Cetuximab (Erbitux) and Paclitaxel (Taxol) , and when I pointed you to this clinical trial http://www.clinicaltrials.gov/ct/show/NCT00089297?order=1 Official Title: Phase II Study of Neoadjuvant Induction Therapy Comprising Cetuximab, Paclitaxel, and Carboplatin Followed By Chemoradiotherapy Comprising Cetuximab (Erbitux), Paclitaxel (Taxol), Carboplatin, and Radiotherapy and Maintenance Therapy Comparing Cetuximab in Patients With Stage III or IV Operable Squamous Cell Cancer of the Head and Neck You agreed that was the one. Did I pick/find the wrong clinical trial? or is he in the arm that only has the Erbitux (Cetuximab) + Radiotherapy ? This seems to be the New England Journal of Medicine http://content.nejm.org/cgi/content/short/354/6/567 The primary end point was the duration of control of locoregional disease; secondary end points were overall survival, progression-free survival, the response rate, and safety. Results The median duration of locoregional control was 24.4 months among patients treated with cetuximab plus radiotherapy and 14.9 months among those given radiotherapy alone (hazard ratio for locoregional progression or death, 0.68; P=0.005). With a median follow-up of 54.0 months, the median duration of overall survival was 49.0 months among patients treated with combined therapy and 29.3 months among those treated with radiotherapy alone (hazard ratio for death, 0.74; P=0.03). Radiotherapy plus cetuximab significantly prolonged progression-free survival (hazard ratio for disease progression or death, 0.70; P=0.006). With the exception of acneiform rash and infusion reactions, the incidence of grade 3 or greater toxic effects, including mucositis, did not differ significantly between the two group/quote/ I don't mean to give you a hard time, but trying to clarify what treatment your husband's on and what the goal is. Not operable due to the location? J I'm still here :-) - checking in sporadically Last CT scan came back unremarkable. I have a colonoscopy coming up in a week or so. That makes me a tad nervous, but there's not much I can do about it anyway. If it's OK, it's OK, if it's not, I'll deal with it - just like with the CT scan. I'm hoping fro the best, but I don't want to jinks it. Original diagnosis was in 2003 - every year gets ma a little closer to the goal. Elsie > I'm still here :-) - checking in sporadically > [quoted text clipped - 5 lines] > I'm hoping fro the best, but I don't want to jinks it. Original > diagnosis was in 2003 - every year gets ma a little closer to the goal. ah, Elsie, it's always good to see your name pop up on the list. :) I hear you about the jinxing. Fingers and everything else crossed for you. Please keep us posted. J > or tell us your news. CHY? woods? Araik? and so many others we haven't > had an update from. Even if you've recently posted to someone else, please [quoted text clipped - 5 lines] > (the others can /do roll calls on their newsgroups). > J |
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