Guest guest Posted December 4, 2002 Report Share Posted December 4, 2002 Hi Kathy Good luck on your broncoscopsy. We all have our fingers crossed for you. Keep us posted. > 1. Innumerable new pulmonary nodules representing worsening metastatic disease within the chest. > 2. No evidence of metastatic disease within the abdomen and pelvis. ) > He really jumped to conclusions. I hate that. Seems once a cancer diagnosis, always a cancer diagnosis in the medical mindset. > So, anyway, saw the pulmonary doc. - he's not sure about the histoplasmosis theory - I am having a bronchoscopy this Friday. Praying that this will give a definitive answer to these nodules, next step he wants to do an open biopsy on lungs if this procedure is not conclusive. > Genetech didn't give me any info on possible lung problems with antiVEGF, referred me to the PI at my cancer center, have left a message for her with no response yet. > Rescheduled my appointment with the surgeon for later this month - didn't want to scare him off with the latest reports/scans and so many questions regarding what's happening in the lungs. > Should have an answer next Tues. from bronchoscopsy results. Meantime, hanging in there and enjoying the preparations and anticipations of the Christmas season as I hope each of you are also. > Take Care, > Kathy O. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2002 Report Share Posted December 4, 2002 I'd like to second that! Hey, did you see this interesting stuff they are doing with PDT for lung tumors (primary lung cancer, but they could do it for lung mets too!) http://www.kcc.tju.edu/Clinical/kccnews/FriedbergPDT.htm Best, > > 1. Innumerable new pulmonary nodules representing worsening > metastatic disease within the chest. > > 2. No evidence of metastatic disease within the abdomen and > pelvis. ) > > He really jumped to conclusions. I hate that. Seems once a cancer > diagnosis, always a cancer diagnosis in the medical mindset. > > So, anyway, saw the pulmonary doc. - he's not sure about the > histoplasmosis theory - I am having a bronchoscopy this Friday. > Praying that this will give a definitive answer to these nodules, > next step he wants to do an open biopsy on lungs if this procedure is > not conclusive. > > Genetech didn't give me any info on possible lung problems with > antiVEGF, referred me to the PI at my cancer center, have left a > message for her with no response yet. > > Rescheduled my appointment with the surgeon for later this month - > didn't want to scare him off with the latest reports/scans and so > many questions regarding what's happening in the lungs. > > Should have an answer next Tues. from bronchoscopsy results. > Meantime, hanging in there and enjoying the preparations and > anticipations of the Christmas season as I hope each of you are > also. > > Take Care, > > Kathy O. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Best of luck on the scan Cliff, sounds like its gonna be good since the CEA is down! Xeloda certainly seems to have worked well for you. Sorry to hear about the home disasters, hope you get it all straightened out soon...I'd probably work on the furnace first if I was U, 'cause if you don't do that the pipes will freeze from the residual water in them (even without pressure or water being " on " ) and then the real fun begins when it finally IS turned back on - believe me you don't wanna know details just get it fixed ;o) (I speak from personal experience LOL!) Best Wishes, ps neat Xmas card, thanks! > M prayers are wth , Kaye, and to all of you out there. I am > off Xeloda for another week due to the side effects and will be gettting > a scan this Monday. My last CEA is the lowest it has been this year. I > feel good and am back to work. I had some minor potholes in my path the > past five days and focus on the now and the positive things in my life. > Water tank broke, no water for 3 days, basement flooded, car died and so > did the furnance. I laugh at all of that and decide what is REALLY > important in my life. Wishing everyone on this list ... good health, > joy, serenity and your dreams to come true. I am VERY grateful to > and each of you for your support and sharing of knowledge. Take care ad > God bless. Cliff . . . " Pick yourself up, dust yourself off and start > all over again. " . . Hoagy Carmichael . . " ALL things are possible. > Pass it on. " To all of you > http://www.castlemountains.net/flashdec/xmas_house.swf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2003 Report Share Posted February 5, 2003 Hi Cliff, Doing a search (my spelling is sooo bad!) to see how to spell Neupogen ( " white blood cell " ) I came across your post in March last yr. Have see SR before, but didn't know, asking, What is SR?? Super you are doing so well, and sharing with all of us!! Always the Best, Betty B. > Haven't posted for a while. Here is what is going on with me. The last > scan showed slight liver tumor growth and one lung met after 20 months > without any treatment ... Stage IV rectal cancer / liver mets. In order > to get more SR, I have to do chemo and Roswell offered me a Taxol > derivitive. I got another opinion and decided on the triplet. even thogh > am not a big chemo fan. Had those chemos before, but not all together. > Been bouncing from diarrhea to comstipation and my appetite is good. No > nausea. The last chemo this Monday kept me up all night with fast track > diarrhea. Immodeum and lonox couldn't stop it. I got panicky when I > found slight blood on the toilet paper. I have been soaking in the > bathtub, which helps. Was given saline for dehydration along with > Neupogen for low white cell counts on Tuesday. I have been going daily > for the Neupogen shots ... have to go tomorrow Easter Sunday. Normal is > 3.5 to 10. Mine were 7.3 before chemo and dropped this Tuesday to 3.1 > and was 1.3 yesterday. It take to 4 to 5 days to kick in and I think > that I have a lot of rubberr in my cells ... I bounce back fast. I have > two weeks off of chemo. This is the stuff in my arsenal .... Maitake 50 > mg ... Selenium 200.... Vit E 1000... MilkThistle seed ... Colostrum ... > Bromelain 250 mg ... Max EPA fish oil 3 caps ...Super Curcumin ... > Lactoferrrin 3 caps ... Super Green Tea Extract ... 1 Gamma E Tocopherol > ... 6 cod liver oil with A and D ... and 2 Maitake mushroom with Reishi > and Shitake. Also. my back went out and taking Vioox ...D/C 'd the low > dose coumadin for my port. I lost less than three pounds while on chemo. > I get the chemo at the same center where I got the SR. The radiation > doctor told me that my body reacts very well to the SR and am looking > forward to 20 or more months without any treatment after SR. Sorry for > the long post. Take care and God bless. Cliff " Pick yourself up. > dust yourself off and start all over again. Hoagy Carmichael ... " Life > is what happens to us while we are making other plans. " Lennon ... > " ALL things are possble. Pass it on. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2003 Report Share Posted May 23, 2003 Subject: update > Well I have just gotten back from oncologist and surgeons office...I have > met on the right adrenal gland and lymph node in the hilar region of my > chest...chemo is the only way ..all agreed this is best procedure and only > one at this time...I am having baseline CT scans tuesday am of the chest and > abdoman area and then we start chemo..this is most likely going to be CPT11, > leuc, and 5fu...1 day a week for 4 weeks and then off 2 ..if I can remember > correctly..Salztman ?? my mind is not remembering it all..I had the biopsy > of adrenal gland this week..they had hoped it was not cancerous...but > is..they said very very unusual for colon cancer..usually goes there from > lung cancer....but we will have full pictures tues..to start with..and go > from there...would some of you that have taken these meds please advise me > and tell me what you can about it..you can e-mail me off list if you would > like...thanks a bunch....((((hugs)))))))..kaye > ..kayeskuts@... > > > > > > kaye biggs > colon cancer survivor > cc resection 1/2000 > liver resection 4/2002 > RFA 4/2002 > > PLEASE HAVE YOUR SCOPES IF > NOT FOR YOURSELF PLEASE DO > IT AS A FRIEND TO ME!!!!!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2003 Report Share Posted May 24, 2003 Hi Kaye, Sorry to hear about the adrenal gland, and hope the Camptosar goes well for you. Be sure you stay on top of problems due to diarrhea (dehydration, etc), it seems to be one of the main bad side effects of this drug combination. There are some patient oriented booklets here (scroll about halfway down the page) http://www.meds.com/colon/camptosar/camptosar.html Best Wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 Hi Kaye Sorry to hear your news - you heard within 1 month of my mum getting the same type of news - surgery wont be option leaving chemo. Im hoping that there are some real advances in chemo, in clincial trials at the moment - surgery is a brutal way to tackle such a complicated disease. Ian - age 55 - dx Massive body blood loss 10/00, dx colon cancer 4/01, right helicolectomy 6/01 - dukes stage C (5 of 12 lymph nodes), only 3 out of 12 sessions of 48 hour 5fu intravenous done 8/01 before stopping for surgical removal of lymph node tumor 01/02. 3 weeks daily localised radiotherapy 3/02 at lymph node site in groin. CEA blood tests and colonscopy 6/02 said to be clear but 12/02 CT scan showed metastasized. Had 6 sessions 1/03 5fu+CPT11 to no effect. CT scan shows liver and intraperitoneal mets >> >>Subject: Re: Newbie Here >> >>hello Gene. sorry to hear about the colon cancer..hope you are hanging in there ok...make sure you write down your questions >>for your oncologist ....I am stage IV ..had colon resection 1/2000 ..6 months chemo...liver mets found 4/2002..had liver >>resection and RFA...and now have mets to right adrenal gland and lymph node in the chest ....I am 56....the main thing for me is >>to stay positive and ask lots of questions....I live in kentucky....keep me posted on how you are doing...and welcome to a club >>nobody really wants to be a member of ..but we can help each other...(((((((((hugs))))))))))))))))..kaye Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 Hi Donna, That is such a very small increase that I would not worry much about it. The Onc told us that a inflamation can very definitely cause an increase. If they handle the blood roughly or don't keep it refrigerated properly it can also cause an icrease. Since the increase is only .01 I would not worry about it at all. Our Onc. told us that he sets up a graph and watches for a spike or trend going up before he starts to worry. Thank you for mentioning the colonoscopy, because I don't think had one this year. I will put that on my page of questions. Joyce > We returned from Orlando. My husband tolerated the trip very well. He spent one entire day at Disney World and swam with my daughter each day after that. His colonoscopy revealed a polyp which was diagnosed by the surgeon as " precancerous " and by the onc as " benign " . It has been removed. The surgeon said apparently my husband is prone to polyps and that he should have a colonscopy annually. I think he should have them every 6 months since this polyp developed in just 7 months. Hubby was not able to have his chemo on Friday due to WBC count that was too low. We go back this Friday to try again. He only has 5 treatments left. His CEA has been holding at 1.2. It was 1.3 on Friday. I am wondering if the slight increase might be due to inflammation from the previous polyp removal. I pray that it will be back to 1.2 this Friday. Does anyone have an opinion regarding this slight increase? > I too am worried about . I will feel better when I see him on the board once again. > > Donna M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 Hi, I'm glad to hear that she's ok and losing the weight too thats a bonus.With me Since April 9th i weighed 314 now i weigh 268. This is the smallest i've been in a while since i've been sick. Of course it was all due to the help of the pancreatitis. I hope to keep losing which i believe i will since i still have the pancreas problem. Prayer is power, Pray for Peace Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 -I'm so very delighted to read your good news, Donna!! If only could take the 81 mgs of aspirin, but he is on Coumadin, so cannot. But he continues with the 800mgs of Tagamet, without any side effects, too. His last CAT scan, a month ago, showed the tumor had not increased appreciably. Our next CAT scan will be in October. We are currently corresponding with Dr in Pittsburgh and the Cancer Ctr where Dr Sugarbaker is. We are waiting for a response from both. You can enjoy Holden Beach more with this wonderful news. Jane -- In colon_cancer_support , " Donna " <mitchell@r...> wrote: > We are going to Holden Beach tomorrow but I wanted to update everyone on my husband. We saw the onc. on Tuesday. She checked him from head to toe and said everything looked good. He had his next to last chemo treatment today. Labs are good. WBC count is up, hgb is highest it has been since he was diagnosed, CEA is 0.8. His last chemo is a week from Monday. He will have CT scans again in September and see the onc. the following week. If nothing shows up on the CT, he will not need to return to the onc. for 3 months. The onc. told us that there has been some research that suggests that taking 81mg of aspirin (a " baby " aspirin) a day helps to prevent cancer recurrence. Needless to say, my husband is now on 81mg of aspirin daily in addition to his 800mg of Tagamet. Not bad for being given 30 days to live last December, LOL God is good! Never give up hope. As Cliff says, all things are possible. > > Donna M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Outstanding Donna!!! Please give your husband a big hug from the " gang " and let him know that we celebrate with both of you!!! Love to hear these success stories!! :-) Somehow I think this is going to be a grea vacation for you! Donna Sisco > We are going to Holden Beach tomorrow but I wanted to update everyone on my husband. We saw the onc. on Tuesday. She checked him from head to toe and said everything looked good. He had his next to last chemo treatment today. Labs are good. WBC count is up, hgb is highest it has been since he was diagnosed, CEA is 0.8. His last chemo is a week from Monday. He will have CT scans again in September and see the onc. the following week. If nothing shows up on the CT, he will not need to return to the onc. for 3 months. The onc. told us that there has been some research that suggests that taking 81mg of aspirin (a " baby " aspirin) a day helps to prevent cancer recurrence. Needless to say, my husband is now on 81mg of aspirin daily in addition to his 800mg of Tagamet. Not bad for being given 30 days to live last December, LOL God is good! Never give up hope. As Cliff says, all things are possible. > > Donna M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 Hello all! The last time I posted was awhile ago but, I wanted to thank you all for your help. My husband, Jeff, has neurosarcoidosis and was having lots of problems. Several of you suggested we go see Dr. Baughmann in Ohio. We saw him on June 30th. Right away he put Jeff on 16mg of Dexamethasone instead of 8mg and then wrote a letter to our doctors telling them what to do. Dr. Baughmann is going to be calling the shots now and our doctors are doing what he says. Jeff started his first Cytoxin treatment this past Friday. I just wanted to take a minute and let you all know how much your help meant to us. Thank God there was this web ring! Thanks again and I'll keep you posted, Missy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 So glad to hear that your husband Jeff is doing well and that your trip to Dr. B was a good experience Take care , Ann Update Hello all!The last time I posted was awhile ago but, I wanted to thank you all for your help. My husband, Jeff, has neurosarcoidosis and was having lots of problems. Several of you suggested we go see Dr. Baughmann in Ohio. We saw him on June 30th. Right away he put Jeff on 16mg of Dexamethasone instead of 8mg and then wrote a letter to our doctors telling them what to do. Dr. Baughmann is going to be calling the shots now and our doctors are doing what he says. Jeff started his first Cytoxin treatment this past Friday.I just wanted to take a minute and let you all know how much your help meant to us. Thank God there was this web ring!Thanks again and I'll keep you posted,Missy~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2007 Report Share Posted August 8, 2007 Peggy you sure have a lot on your plate right now. Hospice is wonderful!! We kept Chuck's Mom at our house but Hospice came in every day. They were there for us as well as her. They were absolutely great. You are all in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Lifehttp://www.geocities.com/chucky5741/breastcancerpatients.html Anxiety Depression and Breast Cancerhttp://health.group.yahoo.com/group/AnxietyDepressionandBreastCancer Angel Feather Loomerwww.angelfeatherloomer.blogspot.com Check out my other ornaments atwww.geocities.com/chucky5741/bcornament.html The Cancer Clubwww.cancerclub.com update Hi all,Not quite sure when I wrote last. Days are kind of fuzzy here. I know I have missed sooooo many posts and am sooo far behind with everyone and I am so sorry for that. I hope everyone is doing and feeling well.MIL is not having radiation. She has 2-3 months left. We are hoping to find a room through Hospice at a place called the Siegenthaler Center. It is a beautiful facility and has RN's and CNA's on staff 24/7. They have their meals prepared and get the meds they need. When it comes time they can get meds to be made comfortable. She will have her own room which will be big and private for her. She will also be able to have her own food, whatever she likes and she can eat whenever she likes, a BIG plus for her, as she is a night owl!!!She has signed the DNR form and has been removed from the heartmonitor. She joked and said if she knew that's all it would take toget that off of her she would have done that a long time ago,lol!!!She is still on the oxygen though. She still struggles to breathe andher blood count of course was extremely low. She is bleedingeverywhere in her body. You'd think she would drown in her own bloodbefore the cancer kills her. They are transfusing her, she still iscoughing up blood but not as much.My idiot BIL has finally realized the finality of her situation butis more concerned with HIS situation. He acts concerned about herwhen around her. When we told her about the stage 4 and the potentialfor success even with treatment he got teary eyed. As he was leavinghe asked his sister to come into the hall and started panickingsaying he couldn't pay for the rent on the house, the electric bill,water bill, garbage bill, phone bill, cable bill, blah blah blah. Hehas to move out of there, what is he going to do? She was pissed tosay the least. God, she's not even gone yet!!!! Roxanne yelled at himand said, she wasn't going to rent a dumpster tomorrow!!!What he is going to have to do is GROW UP!!! He is 48 YEARS OLD!!!!What age do you become a MAN???? He pays for a car, insurance andsome of his own food. Gas, his cigarettes, and golf. The bulk of hismoney gets pissed away(sorry) at the local bars and gambled awaythere and at the casino. He could have at least $50,000 saved in thebank after all these years living at home. I WISH I had a tenth ofthat right now. I just want to grab him and shake him so hard!!!! Alittle angry, can you tell???? It does no good. We figure he'll beliving out of his car. Of course, his mother is worried the mostabout him. She told me to make sure the family didn't fall apart,that we stuck together and saw each other. We don't see each othernow, why would things be different after? doesn't get alongwith his brother anymore, they are completely opposite, thank God. sees Roxanne. Oh well.I went to have my foot looked at finally after a week of pain. Iknow, I know!!! I have an infection in my big toe that has spread.Don't ask me how I got it, haven't a clue. I'm on antibiotics and shegave me pain pills but they make me itch. Not good with pain pills,lol!!! Hurts like heck when I walk so I didn't go to the hospitallast night. Couldn't sleep last night so will be tired today. Got myshot sites all screwed up, but I am taking them, some later than others, don't know what's up or down. I feel like I'm waiting for the wall to fall down on me!!!!We are still going to camp this weekend. We have to get away. This iss only vacation and 's weekend off and we are havingZack's birthday party with the family up there. I hope the weather isgood for us.I don't know if I said anything but Zack has been put on Focalin XR.He has to have the pill opened and we put it in a little soda and hedrinks the beads down fast. He doesn't have the outbursts any morelater in the day, but he seems to be a little more aggressive whenthey do come. Is that normal with Focalin does anyone know? I'mwondering if it's that or if it's just the fact that what's going onand we aren't around alot lately. He did tell my stepmother that helikes to make Mommy and Daddy mad at him. She asked him why and hejust said I don't know. Very interesting.We did finally get the money, they had to wire it into our acct. and they waived the stop check fee of $50 for us. We couldn't cash it because in NY if a check is made out to both people, both people have to appear on the acct. The only acct. we have together is the one that is frozen. The other one we have is at another credit union but we only have a samll savings there and they were going to put a 10 day hold on it because of the size and the fact that it was an out of state check and not an official bank check. NYS banking laws, very strict. We did get to pay our bills though so that is ok for now. The other acct. is still frozen until we pay the rest of that debt off which is about $2500.OK, all, I have a ton of laundry to fold if we are going anywherethis weekend. Poor Zack has no shorts to wear!!! is going topick up his Sgts. uniforms, another thing I'm not looking forward to,sigh.Miss you guys. Thank you so much for all your prayers and thoughts. Sorry these are always so long!!!!Love to all,Peggy No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.8/941 - Release Date: 8/7/2007 4:06 PM Quote Link to comment Share on other sites More sharing options...
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