Guest guest Posted July 15, 2000 Report Share Posted July 15, 2000 The waiting beforehand does seem terminal however once you have surgery -- well looking back the time has flown for me. the first year after surgery passed quickly because of all the changes that were happening due to losing weight. My activity level increased, my wardrobe changed, my tastes refined themselves. I was learning so much about myself during the first year that before I knew it I was cleared to try having a baby. And luckily my hubby and I succeeded the first month we attempted. I think that can be attributed to how in touch with my own fertility I was because of infertility treatment. I knew when my fertile time of month was due to the months I spent looking for it before surgery. Luckily we timed it right. give yourself the time your surgeon says because you will discover so MUCH about yourself -- you need the time to get to know you. Welcome though to the list in case I haven't said it yet. Rasley mailto:drasley@... BTC, Columbus, 10/7/98 Start: 348 pounds and infertile Gained: Health and I AM PREGNANT! > Re: New To Group > > > Thanks ! > I, too, have PCOS and I truly appreciate your advice. It's so > nice to be on > this list! Thanks, again. I will listen to my doc... it will be > worth it when > I hold my little baby. After all the insurance stuff and waiting, > waiting, > waiting... it took me a while to make the decision to have the > surgery, but > now that I HAVE... it seems like an eternity. > > wendy > mrsraynor@... > > ------------------------------------------------------------------------ > Get a NextCard Visa, in 30 seconds! > 1. Fill in the brief application > 2. Receive approval decision within 30 seconds > 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > http://click./1/6628/6/_/551092/_/963709731/ > ------------------------------------------------------------------------ > > Children are a reward from the Lord. > Psalm 127:3 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2000 Report Share Posted July 16, 2000 hI I beelive there are many factors that should be considered b4 deciding when to go for preggarsville. You should know your fertility will probably increase, so be carefl if you wanna plan it. I was told by drs everything from 6-24 months. At 40 I didn't want to wait too long. If I was in my 20s I would have waited longer. It depends also alot on your rate of loss, when it levels off and how your labs, fitness level and eating habits are. My stats are below so you can see where I was at. At 11:13 PM 7/15/00 +0000, you wrote: >Hello everybody... I am actually just about through getting my >insurance approval to have WLS. I have mt final pre-approval " hoop " >this Wednesday. I am eagerly awaiting the day I can tell my >hubby " let's go for it! " For years, its been... no birth control, no >problem. Nothing was going to happen. Now, I actually have to think >about preventing something I was afraid would never happen! Weird. >Did any of you go on the Pill? or some other B.C.? How did you handle >that? Also, my doctors says I should be 16-24 months after surgery >before preg. That's seems like soooooo long. Any thoughts on that? I >weigh 339, so I have about 200 to lose. Finding this list was like >the heavens opened up and angels started singing.... > > >mrsraynor@... > > >----------------------------- Lenore Open RNY Englewood Hopital Dr. Benotti May 11, 1999 Day of surg. weight 256.4 May 21 weight 240.1 May 27 232.9 -23.5 June 21 226.9 -29.5 July 7 220.9 -35.5 August 2 211.7 -44.7 August 16 205.0 -51.4 Sept. 13 198.0 -58.4 Sept. 27 193.3 -63.1 Oct. 19 187.6 -68.8 Nov. 1 185.6 -70.8 Nov. 15 182.6 -73.8 Dec.6 179.1 -77.3 Dec. 20 173.8 -82.6 Jan. 15 168.1 -88.3 Feb. 29 162 -94.4 PREGNANT March 16 165 -91.4 April 18 160.5 -95.9 May 15 161.2 -94.7 1 yr post op July Goal: to shop in regular stores MET Goal 2: 100 pound loss Goal 3: 150 total weight Final goal: To feel and look completely comfortable in my body Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 congratulations on your approval. it is such an exciting time in your life and it only gets better from here!!! i too had problems preop getting pregnant so had the hardest time with the bc issue....i guess thats why i am in the shape im in. i will say, listen to your docs and use something dependable. it is soooo scary going through pregnancy too soon. i will never say i regret having this baby but really, looking back, wish i would have taken everyone more seriously. good luck to you and stick around. this really is a good group. julie New To Group Hello everybody... I am actually just about through getting my insurance approval to have WLS. I have mt final pre-approval " hoop " this Wednesday. I am eagerly awaiting the day I can tell my hubby " let's go for it! " For years, its been... no birth control, no problem. Nothing was going to happen. Now, I actually have to think about preventing something I was afraid would never happen! Weird. Did any of you go on the Pill? or some other B.C.? How did you handle that? Also, my doctors says I should be 16-24 months after surgery before preg. That's seems like soooooo long. Any thoughts on that? I weigh 339, so I have about 200 to lose. Finding this list was like the heavens opened up and angels started singing.... mrsraynor@... ------------------------------------------------------------------------ Get great brand name shoes with just the click of a mouse. Check out the huge selection at Zappos.com, the Web's Most Popular Store! http://click./1/6994/6/_/551092/_/963702825/ ------------------------------------------------------------------------ Children are a reward from the Lord. Psalm 127:3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2000 Report Share Posted August 9, 2000 Hi Dori, Finding the CAUSE of CU is difficult to, say the least. But there is a difference between CAUSE and TRIGGERS. The CAUSE may be anything from infection to an autoimmune disease to root canals, etc. TRIGGERS, on the other hand, are those things which cause the hives/swelling to worsen. For many people with CU, alcohol can be a trigger. Other common triggers are changes in temperature, pressure (for some), aspirin and the list goes on. Some people on this list find that any type of tomato sauce is a trigger. It could be that these things are triggers for you, but not the cause. It may be worth your while to investigate other possibilities as a cause. I would suggest investigating this with your doctor, if you can find one who doesn't want to just send you home with a prescription for prednisone. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 Hi Debby, Welcome to the group. You will find so very much information in the archives here that will help you understand what is going on. The only thing I can say about your numbers and your dr. is find a new endo if this one will not treat you by how you are feeling. I have been through 2 previous ones until finding my new dr.this past June. She listens to what I have to say and treats by how I feel, NOT by my lab values. If you live in a small area and are limited to a choice of endos there, consider driving a bit if necessary. I go about 90 minutes from home and the treatment and my dr. are well worth the drive. Good luck and keep reading, the more you know and understand the more involved YOU will be in your treatment, and no one knows your own body and how you feel better than you do. Take care, Jody _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 Hi Debby, Welcome to the List. I'm sure you will feel comfortable among this supportive and friendly group of Gravesians. I'm so sorry you developed the eye problems. It is not strange you developed them now, because RAI (radioactive iodine, I-131) often acts as a catalyst for ophthalmopathy, and when this happens, eye problems use to start around 6 to 18 months after radioiodine therapy. Many –and increasing!- medical papers have clearly pointed this. I'm sorry you were given RAI 2 months after being diagnosed… and more sorry when I think you were only 34 y.o. Regretfully, many docs act that way, and many of them even don't inform patients about other therapeutic possibilities, or about the problems that having RAI will bring. I'm also sorry to see how insensitive and ignorant that endo has been as to let you go that very hypo. (You know, I hate some docs!, and this endo of yours deserves belonging to the " selected " group I hate). He/she should be for 24 hours with a TSH = 416, so that he/she could LEARN!. How unnecessarily you have been suffering during the year you spent to bring your TSH down to " normal " . Your symptoms seem to me thyroid related, as a consequence of the bad follow-up he/she did. So, in case you're still with him/her… I would suggest you to consider firing such endo. You deserve a better medical care. Regarding eye problems, (same happened to me), my best suggestion for you is to watch them but don't despair with them because once treatment has been tuned and thyroid hormone levels properly kept for some months eye disease uses to solve by itself. (Not always, however, this is why it is advisable to consult and ophthalmologist specialised in Graves' eye disease, to closely follow the process. Best luck! A. > I am 35 years old and was diagnosed with Graves disease in February > of 1999. I had RAI in April of that year. By July my tsh went to > 416 and I started synthroid. My levels came back into " normal " range > just a few months ago, but they are still fluctuating. I developed > the eye problems in March of this year, something they are telling me > shouldn't have happened this late in my treatment. I am still > suffering with the palpitations and severe chest pain. I end up in > the ER every 3 weeks with those symptoms plus dizziness, sweating and > muscle pain. My endocrinologist said that these symptoms are no > longer related to my thyroid that I should have a cardiac work-up, > but I have already done that and my cardiologist is saying that it's > my thyroid. I have noticed a pattern ever since my tsh level started > to come down from the 416...every 3 weeks the level drops. I finally > convinced them to lower my synthroid dose from 150 to 125. I felt > wonderful and I didn't have any " heart " symptoms, but my tsh went > back into hypo state. Once again they increased the synthroid and > once again I was back in the ER, my level went from 8.5 to 2.3 in two > weeks this time. Is anyone experiencing any problems like this even > though their levels are within " normal " range? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 Dear Debby Welcome to the group. I have been here for a few weeks and have received lots of info, love and support - so stick around, you'll benefit from it. I'm so sorry about the hard time you have had. It sounds as if it was one thing after another. I believe that RAI continues to do it 'work' on the thyroid for many months. Maybe it hasn't stablised as yet. Hang in there Caroline Debby wrote: > I am 35 years old and was diagnosed with Graves disease in February > of 1999. I had RAI in April of that year. By July my tsh went to > 416 and I started synthroid. My levels came back into " normal " range > just a few months ago, but they are still fluctuating. I developed > the eye problems in March of this year, something they are telling me > shouldn't have happened this late in my treatment. I am still > suffering with the palpitations and severe chest pain. I end up in > the ER every 3 weeks with those symptoms plus dizziness, sweating and > muscle pain. My endocrinologist said that these symptoms are no > longer related to my thyroid that I should have a cardiac work-up, > but I have already done that and my cardiologist is saying that it's > my thyroid. I have noticed a pattern ever since my tsh level started > to come down from the 416...every 3 weeks the level drops. I finally > convinced them to lower my synthroid dose from 150 to 125. I felt > wonderful and I didn't have any " heart " symptoms, but my tsh went > back into hypo state. Once again they increased the synthroid and > once again I was back in the ER, my level went from 8.5 to 2.3 in two > weeks this time. Is anyone experiencing any problems like this even > though their levels are within " normal " range? > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2001 Report Share Posted January 8, 2001 hi and welcome. i had my surgery aug 99, preg dec 99, delivered aug 00. i wont tell you it was easy especially emotionally but i would do it again...just wait a little longer to get preg this time : ) like we had a lot to say in that department!!! just make sure everything you e at counts nutritionally. i have never taken such good care of myself as i did while i was pregnant....for the baby not for myself. so now tell me, how in the world did you handle a 5 month old baby and the surgery at the same time? julie Re: new to group hi my name is jazzmine and i had WLS by dr fobi on 3-20-00 and have lost so far 92 lbs. doing good looking great. i weigh now about 154 and my husband i would like to get started on another baby. i had my surgery 5 months afater my first child. so tell me what to watch out for and if you guys had it easy or hard with pregnancy after surgery. cant wwait to hear jazzmine Children are a reward from the Lord. Psalm 127:3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 it wasnt easy however i had my husbands sister come to stay with us from texas she was a bit helpfuL my husband worked full time. she took care of the baby for 5 days all by herself while i stayed in the hospital i was exstatic to see her when i came home the helpfullness from the 19 yr old sister lasted about 2 1/2 weeks and i was back on my own changing diapers cleaning and everytiing else that comes with a baby. i did pretty good i think......... wouldnt change the timeing for the world. thnks for writing back we are going to wait till i am 1 yr after surgery. thnks again jazzmine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 wow, you are something. i had trouble taking care of myself much less a little baby. : ) julie Re: new to group it wasnt easy however i had my husbands sister come to stay with us from texas she was a bit helpfuL my husband worked full time. she took care of the baby for 5 days all by herself while i stayed in the hospital i was exstatic to see her when i came home the helpfullness from the 19 yr old sister lasted about 2 1/2 weeks and i was back on my own changing diapers cleaning and everytiing else that comes with a baby. i did pretty good i think......... wouldnt change the timeing for the world. thnks for writing back we are going to wait till i am 1 yr after surgery. thnks again jazzmine Children are a reward from the Lord. Psalm 127:3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2002 Report Share Posted August 10, 2002 Hi there and welcome. You have found yourself in good company here. I myself am not ill, its my mother. She was 54 when she was first diagnosised. She has a complete bowel obstruction and was immediately operated on in 1999. Following the surgery she was on a chemo regimine of 5fu/Lev one week on...three weeks off for 6 months. Mid 2000 she was thought to be cancer free. May 17 2002...after a routine colonscopy they found two more lesions...further exam by CAT and PET scan revealed more seeding in her abdominal cavity. thanks fully no Liver involvement. Given the fact that this is not considered reoccurrent colon cancer, there is no known cure. Instead there are palliative treatments to easy the discomfort and clinical trials that hold promise. My mother is at the midway point in a clinical trial with Oxiplatin and Alimta...so far so good..... My advise to you is to educate yourself as much as you can about what treatments are available to you. The sky is the limit. Oncolgists follow what they call PROTOCOLS...aka forms of treatment they deem to be standard. As I am sure you and your family feel... YOU are not just another patient... you are number one. Educate yourself, visit website of some of the greatest cancer research hospitals this country has to offer, read the archieved posts here, ask questions.... this is your life. Many of us here have " shopped " around to assemble our own teams of doctors who are in tune with what we want and need. , the founder of this site, is temporarily away...but when he gets back next week...pick his brain. he is so amazingly educated in this field. I an glad to hear you are tolerating the treatment well...that is so important...it keep morale up...stay strong and positive and I am sure you will beat this thing!!!! Keep posting, a jkinslow1 wrote:I just joined this group today. My cancer was discovered during a colonoscopy on July 8. Surgery was performed July 16, with about a foot of my colon and two places on my liver removed, staying in the hospital eight days. Started chemo yesterday (Aug. 9) with Leucovorin, Fluorouracil and Irinotecan. So far, knock on wood, I haven't had any side effects. I'm to have chemo each of the next three Fridays, then be off for two weeks. My wife and kids (39 & 41) have been great through all of this, especially my wife. She seems to know exactly when the sympathize, when to give me a pat on the head, and when to give me a boot in the butt. She's made the ordeal a lot easier. I'd be interested to know of any experiences that I might be able to relate to. (I'm keeping my optimism and my sense of humor!) BTW, I'm 68 and never had any serious illnesses. Neither has my wife, and that's made it a new experience for us to cope with. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2002 Report Share Posted August 11, 2002 Hello, and welcome. I just wanted to give you a few words of encouragement. Just know that this disease, despite what the dr. may tell you is curable. My husband was diagnosed three years ago with stage IV having his primary colon tumor and 1 liver lesion. Today he is still cancer free with no recurrance to either place. I know that he is not out of the woods yet, but I also know that his doctors are amazed that he remains cancer free. As a matter of fact my husband goes tomorrow for his routine 6 month mri on his liver and abdominal area as well as a cea level blood test. As always I am worried and apprehensive, but at the same time hopeful and optomistic. Also, you will find a wealth of information and support on this board from all the members and know that there is always someone here that has either been through or is going through what you are. God bless you, Delinda > I just joined this group today. My cancer was discovered during a > colonoscopy on July 8. Surgery was performed July 16, with about a > foot of my colon and two places on my liver removed, staying in the > hospital eight days. Started chemo yesterday (Aug. 9) with > Leucovorin, Fluorouracil and Irinotecan. So far, knock on wood, I > haven't had any side effects. I'm to have chemo each of the next > three Fridays, then be off for two weeks. > > My wife and kids (39 & 41) have been great through all of this, > especially my wife. She seems to know exactly when the sympathize, > when to give me a pat on the head, and when to give me a boot in the > butt. She's made the ordeal a lot easier. > > I'd be interested to know of any experiences that I might be able to > relate to. (I'm keeping my optimism and my sense of humor!) > > BTW, I'm 68 and never had any serious illnesses. Neither has my > wife, and that's made it a new experience for us to cope with. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2002 Report Share Posted August 11, 2002 WOW delinda, that is great about your husband. Would you mind sharing more of your story? ie treatments, supplements etc thanks erica delinda392000 wrote:Hello, and welcome. I just wanted to give you a few words of encouragement. Just know that this disease, despite what the dr. may tell you is curable. My husband was diagnosed three years ago with stage IV having his primary colon tumor and 1 liver lesion. Today he is still cancer free with no recurrance to either place. I know that he is not out of the woods yet, but I also know that his doctors are amazed that he remains cancer free. As a matter of fact my husband goes tomorrow for his routine 6 month mri on his liver and abdominal area as well as a cea level blood test. As always I am worried and apprehensive, but at the same time hopeful and optomistic. Also, you will find a wealth of information and support on this board from all the members and know that there is always someone here that has either been through or is going through what you are. God bless you, Delinda > I just joined this group today. My cancer was discovered during a > colonoscopy on July 8. Surgery was performed July 16, with about a > foot of my colon and two places on my liver removed, staying in the > hospital eight days. Started chemo yesterday (Aug. 9) with > Leucovorin, Fluorouracil and Irinotecan. So far, knock on wood, I > haven't had any side effects. I'm to have chemo each of the next > three Fridays, then be off for two weeks. > > My wife and kids (39 & 41) have been great through all of this, > especially my wife. She seems to know exactly when the sympathize, > when to give me a pat on the head, and when to give me a boot in the > butt. She's made the ordeal a lot easier. > > I'd be interested to know of any experiences that I might be able to > relate to. (I'm keeping my optimism and my sense of humor!) > > BTW, I'm 68 and never had any serious illnesses. Neither has my > wife, and that's made it a new experience for us to cope with. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2002 Report Share Posted August 11, 2002 Thanks for the encouraging words, Delinda. Both the surgeon and oncologist are quite optimistic that I can beat this. And in looking over other web resources, I noted that the American Cancer Society site says that even with Stage IVs (like mine and your husband's), it there are fewer than five liver lesions, surgery can cure it. Well, I like what that says, but I'm still willing and eager to go through chemo to zap any stray cancer cells running aroung my body looking for a place to grow. >Hello, and welcome. I just wanted to give you a few words of >encouragement. Just know that this disease, despite what the dr. may >tell you is curable. My husband was diagnosed three years ago with >stage IV having his primary colon tumor and 1 liver lesion. Today he >is still cancer free with no recurrance to either place. I know that >he is not out of the woods yet, but I also know that his doctors are >amazed that he remains cancer free. As a matter of fact my husband >goes tomorrow for his routine 6 month mri on his liver and abdominal >area as well as a cea level blood test. As always I am worried and >apprehensive, but at the same time hopeful and optomistic. Also, you >will find a wealth of information and support on this board from all >the members and know that there is always someone here that has >either been through or is going through what you are. >God bless you, >Delinda > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2003 Report Share Posted June 15, 2003 Hi Eunice, I'm sorry to hear about your diagnosis. One thing I might mention about " second opinions " - be sure that at least one of the places you go for an opinion is a major, NCI designated cancer center http://www.usnews.com/usnews/nycu/health/hosptl/rankings/specihqcanc.h tm (you have to COPY this link into your browser, as Yahoo will cut off the last 2 letters of the link 'cause its too long!) http://www.cancer.gov/clinicaltrials/finding/NCI-cancer-centers/map Also see http://www.learningplaceonline.com/illness/choices/art.htm [snip] Get a REAL Second Opinion You have probably already been told to get a second, third or fourth opinion—even if your insurance doesn't cover it. We add to that suggestion the need to make certain the person you see is not a " buddy " of the person who recommended him or her. Even though the advice you receive may be just fine, doctors usually are friends with those who went to the same medical school or training program. Thus any " objective " second opinion is likely to represent the same approach. However, if you get identical opinions from two or three doctors who aren't in any way related by practice or alma mater, you can give extra weight to that option. Awhile back, someone wrote to me about his Mom who was dx with rectal cancer...she had seen several " local " surgeons who insisted she HAD to have a colostomy. Problem was, the doctors she saw were all " connected " (knew each other) in the way described in the above article! She lived in Florida, and I strongly encouraged him to get her an appt w/ Moffitt cancer center down there. When she did, it turned out the surgeons there recommended a course of combined chemotherapy and radiation, which successfully shrunk the tumor so that she could avoid the ostomy! Not only that, the surgeons at Moffitt used a relatively new surgical technique called " Total Mesorectal Excision " http://ourworld.compuserve.com/homepages/suthercon/tme.htm Surgeons using this technique can often avoid the colostomies, along with having less chance for cancer recurrence! Perhaps you already know about and have explored this, but if not I think its really worthwhile to take a look before making any decisions about surgery. Are they recommending chemoradiation for you prior to surgery? Best Wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 > My husband was diagnosed with colon cancer with liver mets in june of > 2002. He had a resection of the colon and got clean edges to remove > a tumor and has been taking chemo since. He took CPT 11/LV/5FU > combo - 30 treatments in all. His CEA number started last June at > 3885 and dropped in March to 502 before going up this June to 1623. > The liver tumors have gotten smaller each CT scan which is good > considering the whole small lobe of the liver was totally tumor and > much of the large lobe. Since the tumor markers went back up the > looked more closely at the CT scans and found tumors in the > petitoneal. He is having a debulking surgery on July 15th and the > will also do RFA on any remaining tumors in his liver. All the while > they will do chemo directly to the peritoneal area. It is > disappointing since the CEA numbers have constantly come down, we > thought we were winning the battle to have to start over with surgery > again. It took several weeks to find a surgeon to actually do this > type of surgery. We live in the Dallas area so we have access to > many hospitals and programs, and we are only a short drive from MD > in Houston. They have not told us which drugs they will use > to treat the peritoneal. The surgeon is Dr. Steckler at > Medical City in Dallas, and the onc he is talking to regarding the > drugs in Dr. Savin. Our regular onc is at Baylor Garland named Dr. > Li. If anyone has had this type of procedure done, I would be most > interested in knowing how it went. We are determined to beat this > disease. My husband will be 40 in October and we have two young > girls 9 amd 12 at home. Any help will be most appreciated. > Donna Sims By the way..he has also had no side effects to his chemo treatments, except for loss of hair on his legs. No hair loss on his head, no nausea, not any fatigue really. He has continued to work full time through all these treatments. This is the first time he has been in any real pain. Due to the tumor in the peritoneal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Hi Donna and welcome to the forum. I think that you are doing very well to arrange the debulking surgery. RFA and direct peritoneal chemotherapy that you are proceeding with. I live in Canada, and I am sure that if I were in that situation, I wouldn't be able to receive ANY of those treatments. In fact, I am going out of province next week just to have a PET scan done. When I first asked for one (I have a rising CEA and a questionable lung mass), I was told, " We don't use PET scans here as a 'screening tool'. " I know what you mean about the small children. I have a 16-year-old and a 7-year-old and I want to hang around for as long as possible for their sake. I hope your husband does well. Barry > > My husband was diagnosed with colon cancer with liver mets in june > of > > 2002. He had a resection of the colon and got clean edges to > remove > > a tumor and has been taking chemo since. He took CPT 11/LV/5FU > > combo - 30 treatments in all. His CEA number started last June at > > 3885 and dropped in March to 502 before going up this June to > 1623. > > The liver tumors have gotten smaller each CT scan which is good > > considering the whole small lobe of the liver was totally tumor and > > much of the large lobe. Since the tumor markers went back up the > > looked more closely at the CT scans and found tumors in the > > petitoneal. He is having a debulking surgery on July 15th and the > > will also do RFA on any remaining tumors in his liver. All the > while > > they will do chemo directly to the peritoneal area. It is > > disappointing since the CEA numbers have constantly come down, we > > thought we were winning the battle to have to start over with > surgery > > again. It took several weeks to find a surgeon to actually do this > > type of surgery. We live in the Dallas area so we have access to > > many hospitals and programs, and we are only a short drive from MD > > in Houston. They have not told us which drugs they will > use > > to treat the peritoneal. The surgeon is Dr. Steckler at > > Medical City in Dallas, and the onc he is talking to regarding the > > drugs in Dr. Savin. Our regular onc is at Baylor Garland named Dr. > > Li. If anyone has had this type of procedure done, I would be most > > interested in knowing how it went. We are determined to beat this > > disease. My husband will be 40 in October and we have two young > > girls 9 amd 12 at home. Any help will be most appreciated. > > Donna Sims > > By the way..he has also had no side effects to his chemo treatments, > except for loss of hair on his legs. No hair loss on his head, no > nausea, not any fatigue really. He has continued to work full time > through all these treatments. This is the first time he has been in > any real pain. Due to the tumor in the peritoneal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Hi Donna, I would also like to welcome you to our site. By the way, you make our 3rd Donna here so far. When gets back from Vegas I am sure he will reply to your post. He is quite knowledgeable about the liver. You might want to take a look at his personal research site, its very imformative. http://ourworld.compuserve.com/homepages/suthercon/main.htm By the way, I am from Boerne, Tx. It's in the hill country about 30 miles from San . Donna, from what I understand we have one of the best doctors right here at the University of Texas Health Science Center, that is quite skilled in doing RFA on the liver. If you go to the google search engine and type in his name, I think there are some articles on him. The San news paper did quite an article on him a few months ago. Joyce > > My husband was diagnosed with colon cancer with liver mets in june > of > > 2002. He had a resection of the colon and got clean edges to > remove > > a tumor and has been taking chemo since. He took CPT 11/LV/5FU > > combo - 30 treatments in all. His CEA number started last June at > > 3885 and dropped in March to 502 before going up this June to > 1623. > > The liver tumors have gotten smaller each CT scan which is good > > considering the whole small lobe of the liver was totally tumor and > > much of the large lobe. Since the tumor markers went back up the > > looked more closely at the CT scans and found tumors in the > > petitoneal. He is having a debulking surgery on July 15th and the > > will also do RFA on any remaining tumors in his liver. All the > while > > they will do chemo directly to the peritoneal area. It is > > disappointing since the CEA numbers have constantly come down, we > > thought we were winning the battle to have to start over with > surgery > > again. It took several weeks to find a surgeon to actually do this > > type of surgery. We live in the Dallas area so we have access to > > many hospitals and programs, and we are only a short drive from MD > > in Houston. They have not told us which drugs they will > use > > to treat the peritoneal. The surgeon is Dr. Steckler at > > Medical City in Dallas, and the onc he is talking to regarding the > > drugs in Dr. Savin. Our regular onc is at Baylor Garland named Dr. > > Li. If anyone has had this type of procedure done, I would be most > > interested in knowing how it went. We are determined to beat this > > disease. My husband will be 40 in October and we have two young > > girls 9 amd 12 at home. Any help will be most appreciated. > > Donna Sims > > By the way..he has also had no side effects to his chemo treatments, > except for loss of hair on his legs. No hair loss on his head, no > nausea, not any fatigue really. He has continued to work full time > through all these treatments. This is the first time he has been in > any real pain. Due to the tumor in the peritoneal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 > > My husband was diagnosed with colon cancer with liver mets in june > of > > 2002. He had a resection of the colon and got clean edges to > remove > > a tumor and has been taking chemo since. He took CPT 11/LV/5FU > > combo - 30 treatments in all. His CEA number started last June at > > 3885 and dropped in March to 502 before going up this June to > 1623. > > The liver tumors have gotten smaller each CT scan which is good > > considering the whole small lobe of the liver was totally tumor and > > much of the large lobe. Since the tumor markers went back up the > > looked more closely at the CT scans and found tumors in the > > petitoneal. He is having a debulking surgery on July 15th and the > > will also do RFA on any remaining tumors in his liver. All the > while > > they will do chemo directly to the peritoneal area. It is > > disappointing since the CEA numbers have constantly come down, we > > thought we were winning the battle to have to start over with > surgery > > again. It took several weeks to find a surgeon to actually do this > > type of surgery. We live in the Dallas area so we have access to > > many hospitals and programs, and we are only a short drive from MD > > in Houston. They have not told us which drugs they will > use > > to treat the peritoneal. The surgeon is Dr. Steckler at > > Medical City in Dallas, and the onc he is talking to regarding the > > drugs in Dr. Savin. Our regular onc is at Baylor Garland named Dr. > > Li. If anyone has had this type of procedure done, I would be most > > interested in knowing how it went. We are determined to beat this > > disease. My husband will be 40 in October and we have two young > > girls 9 amd 12 at home. Any help will be most appreciated. > > Donna Sims > > By the way..he has also had no side effects to his chemo treatments, > except for loss of hair on his legs. No hair loss on his head, no > nausea, not any fatigue really. He has continued to work full time > through all these treatments. This is the first time he has been in > any real pain. Due to the tumor in the peritoneal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2003 Report Share Posted July 27, 2003 Hello Judy, I am glad that you posted if just to relieve some of your anxiety. I have no idea what your diagnosis will be but I hope it is nothing serious. You did mention losing weight which you thought was a symptom of colon cancer. I actually gained weight and now, 6 weeks after my cc surgery, I have gained back 5 of the 8 lbs I lost. Many have varying symptoms, some had pain in their abdomen, some did not. I think you will just have to wait to see what your tests reveal. Meanwhile, you may want to read some of the posts on this board to familiarize yourself with the subject, even if you do not have the disease. Early diagnosis is key, of course but cancer does not mean the end of the world either. Please keep us posted and know that if you need information and support from a group of compassionate and knowledgeable people, you have come to the right place. Best wishes, Kit MacBride Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2003 Report Share Posted July 28, 2003 Dear Judy, I am anxious to hear what you found out today about being anemic. Are you in an HMO? Even so, you sound like maybe you are in a smaller city. I would think your doctor could set you up with a gastroenterologist in a neighboring city. Are you near a large university with a good medical school? The other thought I have is that the minute you get set up with a gastroent., call and get put on their cancellation list. Someone or other may miss an appt, and you can try and assure them you're willing to drop everything and come right in, if an opening comes up. You could tell your employer something has come up that may require you to leave with little warning, and that it is medical. I don't know much about other colon problems, like ulcerative colitis, Crohn's Disease, or simple Irritable Bowel Syndrome, etc., but I bet that your symptoms might be common in possibly one of those, so don't automatically jump to cancer. You came to the right place for support & advice. Do take care. Will keep you in my prayers. Jane colon_cancer_support , " Judy " <just1pup@y...> wrote: > Hello everyone, > > Please forgive me for being premature...I have not been diagnosed > with colon cancer. I am worried I may have it. > > A week ago I found bright red blood on the surface of my stool and > saw a doctor this past Friday. The doctor at first thought it could > be hemorrhoids, but she found tarry blood on my stool test strip. > > It is strange that I haven't had tarry stools. For about a year, I've > had several bouts with diarrhea (usually after a fatty meal), but > other than that my stools appear normal, not thin or dark or red. > > I should say this was not my first positive occult blood test. In > early April I had a pelvic exam, and the gynecologist did a stool > test as well. Back then the amount of blood was just a trace. That > doctor gave me two test strips to take home. However, I > was in the process of escaping an abusive relationship, buying a > house, AND starting a new job. Although I was worried about the test > results, I was so busy and stressed I did not use the test strips. > > My new doctor ordered a blood draw to see if I was anemic. I will > know by tomorrow afternoon. She warned me that all the > gastroenterologists in my city are " booked solid " for the next two > months. She said she may be able to convince one of them to examine > me, if the blood tests show the bleeding has caused severe anemia. > > Since it's already been 3 months since the first positive, isn't > waiting another 2 months dangerous? > > I have been so worried this entire weekend. I don't have abdominal > cramps, but there is a pressure feeling in my lower back/buttocks. I > have also lost weight over the past week, which I hope is only due to > stress, but of course weight loss is another symptom of cc. > > Sorry for the long post. I am very scared. I am all alone in this > city, because the only friends I had were my ex-boyfriend's. I have > no one to talk to about this. > > Thanks, > Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2003 Report Share Posted July 30, 2003 , Welcome to the group! I'm sorry that you're wife is ill. Most of us know that it isn't easy to live with this disease, and I'm sure it's not easy to be the caretaker for one of us either! I think it's a wonderful idea to have a party for your wife's one year anniversary of dealing with this disease. I've found that I feel better when I just embrace the disease, instead of trying to fight it off.....especially since it's not going anywhere! I'm sure you'll find this group as helpful and supportive as I have in my short time here. Anyway, I wish the best of luck for both you and your wife! I hope to hear from you again soon. Neisa > [Original Message] > > To: <Neurosarcoidosis > > Date: 7/30/2003 6:08:23 PM > Subject: New to group > > Hello, > I am new to the Sarcoidosis group. While I (thankfull) don't have > neurosarcoidosis, my wife does. She began showing the initial > symptoms about a year ago. Since then things got bad, but we've come > a long way back. I say we, like I had much to do with it!:-) > > Anyway, I am looking for opinions on an idea I came up with this > morning. I just got done reading Duffy's book about her go > around with this " wonderful " condition and I liked her take on how > she has adjusted her attitude and is looking at some of the small > pleasures in life. My idea is throw my wife a little dinner party to > celebrate living through one year with neurosarcoidosis. Emphasis on > living. My thought is to give thanks that she is still with us and > is able to function at a realatively high level. I also want to be > (hopefully) able to laugh in the face of this. > > Any thoughts? > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives and Digest Attachment Pictures:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members 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/links > > Personal Complaints or problems:- > Please email the moderators > mailto: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/join > > To 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 July 30, 2003 Report Share Posted July 30, 2003 Hi kyle, welcome to the group....but we are sorry to hear your wife suffers from this disease... I think the dinner party with the emphasis on life is a great idea..... its still early yet in her disease... I hope she is getting the treatment she needs and not being put off by the medical field... they tend to put it off till it gets really bad... then there is permanent damage... Just take good care of her.. and don't let anything slide... be there for her.. and fight her battles cause there are gonna be days she's not gonna fell like fighting them... If you need help, a place to vent. or just want to talk... feel free to count on us.. and we'll do what we can.... Good luck to you and your wife... Big Hug, -- New to group Hello, I am new to the Sarcoidosis group. While I (thankfull) don't have neurosarcoidosis, my wife does. She began showing the initial symptoms about a year ago. Since then things got bad, but we've come a long way back. I say we, like I had much to do with it!:-) Anyway, I am looking for opinions on an idea I came up with this morning. I just got done reading Duffy's book about her go around with this "wonderful" condition and I liked her take on how she has adjusted her attitude and is looking at some of the small pleasures in life. My idea is throw my wife a little dinner party to celebrate living through one year with neurosarcoidosis. Emphasis on living. My thought is to give thanks that she is still with us and is able to function at a realatively high level. I also want to be (hopefully) able to laugh in the face of this. Any thoughts? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 KYLE, THAT IS ONE OF THE SWEETEST THINGS THAT I HAVE HEARD IN A LONG TIME. YOUR WIFE IS VERY LUCKY TO HAVE YOU THERE, ESPECIALLY WHEN YOU ARE ALSO GOING THROUGH YOUR OWN HELL. PLEASE TAKE SOME PICS, AND SHARE THEM WITH US,,IT WILL BE LIKE WE ARE ALL TOGETHER WITH YOU. THINKING OF YOU ALWAYS,,, LOVE FROM IL LYNNE > Hello, > I am new to the Sarcoidosis group. While I (thankfull) don't have > neurosarcoidosis, my wife does. She began showing the initial > symptoms about a year ago. Since then things got bad, but we've come > a long way back. I say we, like I had much to do with it!:-) > > Anyway, I am looking for opinions on an idea I came up with this > morning. I just got done reading Duffy's book about her go > around with this " wonderful " condition and I liked her take on how > she has adjusted her attitude and is looking at some of the small > pleasures in life. My idea is throw my wife a little dinner party to > celebrate living through one year with neurosarcoidosis. Emphasis on > living. My thought is to give thanks that she is still with us and > is able to function at a realatively high level. I also want to be > (hopefully) able to laugh in the face of this. > > Any thoughts? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 KYLE, I THINK THE DINNER PARTY IS A W ONDERFUL IDEA!! IT WOULD SURE MAKE UR WIFE FEEL GOOD AND REINFORCE HER AWARENESS OF YOUR LOVE. IT IS NICE WHEN THE ONES WE LOVE DONT PITY US IN THIS TIME OF ILLNESS BUT, CONTINUE TO HAVE PATIENCE AND UNDERSTANDING. HAVE U STARTED THE WHOLE SPIEL WITH THE DOCS AND TESTS AND HOSPITAL STAYS? WHAT KIND OF SARCOID DOES SHE HAVE? MY NAME IS NICOLE AND I AM 20, THE BABY OF THE GROUP. SOMETIMES KNOWN AS CARROTS. I GO TO SCHOOL IN TOWSON MARYLAND BUT I LIVE IN NEW JERSEY. I HAVE NEUROSARCOID AND HAVENT HAD THE PLESURE OR JOY OF BEING POSTIVELY DIAGNOSED YET BUT DEAL WITH THE ONCOMING EPISODES IN HOPE FOR A POSITIVE TEST. JUST KNOW THAT IN TIME THERE WILL BE SOME VERY TRYING DAYS FOR BOTH YOU AND YOUR WIFE AS WELL AS THE FAMILY, BE HER FRIEND. LISTEN TO HER CRY OR YELL OR BE ANGRY. BUT ALSO DONT FORGET ITS ALSO OK FOR U TO WANT TO YELL OR CRY AND BE ANGRY TOO. WE ARE A GOOD GROUP, A DIVERSE, SPECIAL KIND OF PEOPLE ARE HERE AND WE ALL LIVE IN DIFFERENT PARTS OF THE COUNTRY AS WELL AS THE WORLD. SARCOID BROUGHT US HERE AND WE ARE HAPPY TO HAVE U AND HER APART OF OUR FAMILY. NICOLE AKA CARROTS > >Reply-To: Neurosarcoidosis >To: Neurosarcoidosis >Subject: New to group >Date: Wed, 30 Jul 2003 22:08:19 -0000 > >Hello, >I am new to the Sarcoidosis group. While I (thankfull) don't have >neurosarcoidosis, my wife does. She began showing the initial >symptoms about a year ago. Since then things got bad, but we've come >a long way back. I say we, like I had much to do with it!:-) > >Anyway, I am looking for opinions on an idea I came up with this >morning. I just got done reading Duffy's book about her go >around with this " wonderful " condition and I liked her take on how >she has adjusted her attitude and is looking at some of the small >pleasures in life. My idea is throw my wife a little dinner party to >celebrate living through one year with neurosarcoidosis. Emphasis on >living. My thought is to give thanks that she is still with us and >is able to function at a realatively high level. I also want to be >(hopefully) able to laugh in the face of this. > >Any thoughts? > > > _________________________________________________________________ MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*. http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
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