Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 Elaine, Thanks to you for the information. I will follow through now that I can find your website. I am really out of the loop. Is GO for Graves Disease or ?? I thought Graves was GD in short. Frannie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 Hi Frannie, GD is Graves' disease and GO is Graves' Ophthalmopathy, the associated eye disease. Sometimes it's called thyroid eye disease or TED. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 Elaine, When I was on your web site, I didn't see the publishers phone number or web addie...I put it out from and earlier e-mail you had sent that the book was coming out. Hope that is okay, but you may want to include them on your web site. Jody _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 Hi Frannie, GO is for Graves Opthomology (sp?) It is the eye disease that many of us get. Especially those of us that have had RAI. GD is Graves Disease Jody _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2001 Report Share Posted May 30, 2001 Dear Frannie, I am so sorry to hear of your suffering with Graves'. I hope this group can help you through this experience. They are a great group of people who are very giving and helpful. You couldn't buy better support, I don't believe. I am living in California, in Sonoma county. It is near the SF bay area. What part will you be moving to? > Hello, > I want to introduce myself and give a little history of my battle with > Graves Disease. I was diagnosed in 1991,after two years of anti- > thyroid medications, RAI was done. I developed TED, have had orbital > decompression and now have diplopia. What a nightmare all this has > been. My health for the past 5 years has been terrible and I am > trying to find some answers. I followed all the advice of my MD's, > too sick to figure anything out for myself. My thyroid has not been > checked for a little over a year. > We are in the middle of a move from Indiana to California. > I plan to locate a doctor for a blood test soon, to try and determine > what is going on. > I would guess I am hypo, currently, but am not sure. > In my opinion, all of the doctors looked at the blood work and > ignored what I was telling them about how I felt. I would guess at > this point, I need more T4, am not coverting to T3 properly, or T3 is > not getting into the cells. > I have also been diagnosed with metal toxicity, which effects the > thyroid function. > > I welcome infomation from any and all of you, as well as your support. > Has anyone been down this road? The last eye doctor, strabimus > surgeon said my diplopia was not going to improve with surgery, as he > considered it so slight. I wish they were all looking through my eyes. > If I can get some health back, maybe I will have the strength to see > if there is any real help available. I think a current blood test and > possible med change is the first priority. > > I found this group trying to get to Elaine's website. Now I can't > seem to do that. I would like to order the book she has written. Let > me know where I saw that info please. > Regards, > Frannie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2001 Report Share Posted May 30, 2001 Hi Jody, Why don't you try it again? I have added a separate page, i think it's the second page link, that says " my Graves disease book, " which has info and the table of contents. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2001 Report Share Posted May 30, 2001 I will be moving to Ventura, Oxnard area. I lived in Sonoma county for six months last year. It is a beautiful place. I hope to return their often once my husband comes here on a full time basis. My daughter moved from St. Helena to Colorado in November so I moved south in search of a helpful doctor. How do I figure out the first name of the replied e-mails when it is not a part of the e-mail addy? Frannie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 Hi Frannie, So interesting that you used to live in my neighborhood. Maybe we will meet one day when you are up here for a visit. I hope you find a good doctor in the south. I found a very good one, I am told, in San Francisco, so if it doesn't work out for you down there... As far as the first names, you are at our mercy if we don't sign our posts. F > I will be moving to Ventura, Oxnard area. I lived in Sonoma county for six > months last year. It is a beautiful place. I hope to return their often once > my husband comes here on a full time basis. My daughter moved from St. Helena > to Colorado in November so I moved south in search of a helpful doctor. > How do I figure out the first name of the replied e-mails when it is not a > part of the e-mail addy? > > Frannie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Hi Trish, It's good to hear that RAI worked out for you. In my case, I really didn't have problems for several years, other than developing pretibial myxedema. I moved between a 0.125 and 0.15 dose of Synthroid for the most part, but as I became more hypothyroid, I was told my symptoms of sleep apnea, high cholesterol, etc. weren't thyroid related. Now on a proper replacement dose that includes T3 (Armour thyroid, a glandular extract), I feel much better but have never felt as good as I did before RAI. My eyes have never looked the same either. While I don't have overt Graves' ophthalmopathy, I do have some of the periorbital edema or swelling, and congestive infiltration that occur with GO. I also have an atrophied pancreas, that is likely a result of RAI as all the organs that concentrate iodine can be affected. And I developed another autoimmune disorder, celiac disease, likely because the original immune system dysfunction that caused GD was never addressed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Trish, Welcome! I have not had the RAI but 2 young boys or not tiredness and inability to lose weight are both symptoms of hypo. I'm sure some of the more experienced folks here will have more to add...but how long since you've had some blood work? Do you know if your thyroid has been functioning at all on it's own? And have you been checked regularly to see if you need to up your dose of of synthroid. I believe that some folks have problems with the RAI because it's permanent, there's no going back. Once your thyroid is dead, it's just dead. In any event, welcome to the group, I know I love it here, so many helpful and wonderful and well informed people. Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Hi Trish, Welcome to the group. I'm sure others will reply to your question about why we regret the RAI also...but first I wanted to give you a URL that many of us RAIers also belong to. The archives there will give you a lot of information also. Which form of treatment someone chooses is totally up to the individual. RAI is a permanent treatment that can cause problems. You will see my anger and frustration as I tell you my reasons because my dr. was not honest with me and when I think back to that time I still feel very betrayed by the dr...and I was brought up to trust and respect drs. not challenge them, after all they 'know best' Not always they don't and not for every person. Anyhow, if you see my anger, know it is NOT directed at you It is my frustration to deal with http://groups.yahoo.com/group/AtomicWomen I had RAI over 5 years ago now, being bullied into, actually lied to about it and what it would do, and as I was so very sick with GD at the time and didn't have a computer I went along...oh my, never rock a boat with a dr....NOT! Anyhow, I was left to go hypo, was not given proper labs after it, my dosage never changed for over 4 years and I felt miserable. All the hypO symptoms and I still have a lot of them, though I now have a wonderful endo who runs the labs, adjusts the meds and we are both working to find what I need to feel GOOD again, not even asking for great...GOOD will do. And with her and being on Armour I do feel better than I have in many many years. About a year and a half ago I started looking up GD while being very depressed do to being hypo and found one Graves board that lead me to here and have learned so very very much. And I guess besides how I feel the biggest thing about RAI is WHY do drs. and hospitals think it is perfectly okay to destroy a body's organ or gland when the disease is a disease of the immune system, not the gland? Especially when it is as important to daily life as our thyroid is to each and everyone of us! The only thing I can believe and I learned from reading is because it is easier for drs. and cheaper for insurance companies to destroy a part of our body...then put them on a daily pill and leave them go. Once that is done and we are still tired, exhausted, not able to concentrate, can't find the right word we are looking for, hair falling out, weight gain, painful feet, sore legs, Graves Ophthalmology (which is exasperated by RAI)...they tell us " your graves is taken care of these problems are all in your head " here take a prozac (or paxil or zoloft one of the other zombie drugs out there) and leave us to feel like crap and sink deeper into depression. This group and the people here have helped to educate me so I don't take that attitude from drs. anymore, I refuse to let them get away with it...if they are that arrogant then I get rid of them. There are good endos out there that do care that continue to learn and listen to their patients and believe them, I have one as do many others here. Does your dr. listen to you? Does he/she run regular labs on you? Adjust your dose if need be? Do any of the following symptoms apply to you? Hypo Aversion to cold Brain stops working (Brain Fog) Can't get moving Can't spell own name Depression Dry, brittle hair Eyebrows stop growing Feeling like a slug; no energy Feeling of being overwhelmed Headache Heavy menses & cramping High cholesterol & triglyceride levels Inability to be self-directed or stay on task Irregular heart rate (bradycardia) Joint pain Long menstrual cycle Loss of memory Nails that split, break, get thickened Never " right " temperature; internal thermostat not working Panic attacks Premature birth Puffy eyes, face, hands, feet Severe hair loss Severe weight gain even when not eating much Sleep apnea Sleepy all day, insomnia at night Still birth Suicidal thoughts Thick, dry tongue Unable to stop crying although not " sad " Eyes Bad night vision Blurring of vision Bulging eyes Double vision Dry eyes Eyestrain Inability to close eyes to sleep Lid lag Sensitive to light, even indoors Staring Swelling of eyes Tearing Ulceration If so, what does your dr. say when you complain about them? If any do fit you, don't let them blame it on your having little ones, your life style...read and learn here and get lab work done regularly if need be. I am glad that after 2 years you are doing good with your current treatment and hopefully you will continue to do well and your dr. is keeping an eye on things. There are some out there that do just fine and maybe you will be one of them If you are pregnant (can't remember) or will be, make sure your FT3/FT4 are checked to make sure you don't go hypO during pregnancy as it can cause some problems for the baby and can make the baby hypO also. Anyhow, take care, read the archives, watch for hypO symptoms, especially if you are expecting, it is important...and jump in with questions and comments! Take care, Jody _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Hi Val, I just got my blood work done again, and no change. I think its just my TSH that gets checked. That's all I need, right? Don't know if my thyroid is functioning at all on its own. Its great to meet you! Trish > Trish, > > Welcome! I have not had the RAI but 2 young boys or not tiredness and > inability to lose weight are both symptoms of hypo. > > I'm sure some of the more experienced folks here will have more to > add...but how long since you've had some blood work? Do you know if > your thyroid has been functioning at all on it's own? And have you > been checked regularly to see if you need to up your dose of of > synthroid. > > I believe that some folks have problems with the RAI because it's > permanent, there's no going back. Once your thyroid is dead, it's just > dead. > > In any event, welcome to the group, I know I love it here, so many > helpful and wonderful and well informed people. > > Val Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Jody, I get blood work done every 6 months right now, and I think its just my TSH that gets checked. I'm wondering if what you're saying is that some people still feel the effects of hypothyroidism even if they are supposedly on the right amount of synthroid? And if so, why? I've always been under the impression that you just need to get the right dose of synthroid to bring your TSH where it should be and that's it, finito, with regular checks for necessary changes in dosage. Is this not so? Thanks for welcoming me! Trish > Hi Trish, > Welcome to the group. > > I'm sure others will reply to your question about why we regret the RAI > also...but first I wanted to give you a URL that many of us RAIers also > belong to. The archives there will give you a lot of information also. > > Which form of treatment someone chooses is totally up to the individual. > RAI is a permanent treatment that can cause problems. You will see my anger > and frustration as I tell you my reasons because my dr. was not honest with > me and when I think back to that time I still feel very betrayed by the > dr...and I was brought up to trust and respect drs. not challenge them, > after all they 'know best' Not always they don't and not for every person. > Anyhow, if you see my anger, know it is NOT directed at you It is my > frustration to deal with > > http://groups.yahoo.com/group/AtomicWomen > > I had RAI over 5 years ago now, being bullied into, actually lied to about > it and what it would do, and as I was so very sick with GD at the time and > didn't have a computer I went along...oh my, never rock a boat with a > dr....NOT! > > Anyhow, I was left to go hypo, was not given proper labs after it, my dosage > never changed for over 4 years and I felt miserable. All the hypO symptoms > and I still have a lot of them, though I now have a wonderful endo who runs > the labs, adjusts the meds and we are both working to find what I need to > feel GOOD again, not even asking for great...GOOD will do. And with her and > being on Armour I do feel better than I have in many many years. > > About a year and a half ago I started looking up GD while being very > depressed do to being hypo and found one Graves board that lead me to here > and have learned so very very much. And I guess besides how I feel the > biggest thing about RAI is WHY do drs. and hospitals think it is perfectly > okay to destroy a body's organ or gland when the disease is a disease of the > immune system, not the gland? Especially when it is as important to daily > life as our thyroid is to each and everyone of us! The only thing I can > believe and I learned from reading is because it is easier for drs. and > cheaper for insurance companies to destroy a part of our body...then put > them on a daily pill and leave them go. > > Once that is done and we are still tired, exhausted, not able to > concentrate, can't find the right word we are looking for, hair falling out, > weight gain, painful feet, sore legs, Graves Ophthalmology (which is > exasperated by RAI)...they tell us " your graves is taken care of these > problems are all in your head " here take a prozac (or paxil or zoloft one of > the other zombie drugs out there) and leave us to feel like crap and sink > deeper into depression. > > This group and the people here have helped to educate me so I don't take > that attitude from drs. anymore, I refuse to let them get away with it...if > they are that arrogant then I get rid of them. There are good endos out > there that do care that continue to learn and listen to their patients and > believe them, I have one as do many others here. > > Does your dr. listen to you? Does he/she run regular labs on you? Adjust > your dose if need be? Do any of the following symptoms apply to you? > > Hypo > Aversion to cold > Brain stops working (Brain Fog) > Can't get moving > Can't spell own name > Depression > Dry, brittle hair > Eyebrows stop growing > Feeling like a slug; no energy > Feeling of being overwhelmed > Headache > Heavy menses & cramping > High cholesterol & triglyceride levels > Inability to be self-directed or stay on task > Irregular heart rate (bradycardia) > Joint pain > Long menstrual cycle > Loss of memory > Nails that split, break, get thickened > Never " right " temperature; internal thermostat not working > Panic attacks > Premature birth > Puffy eyes, face, hands, feet > Severe hair loss > Severe weight gain even when not eating much > Sleep apnea > Sleepy all day, insomnia at night > Still birth > Suicidal thoughts > Thick, dry tongue > Unable to stop crying although not " sad " > > Eyes > Bad night vision > Blurring of vision > Bulging eyes > Double vision > Dry eyes > Eyestrain > Inability to close eyes to sleep > Lid lag > Sensitive to light, even indoors > Staring > Swelling of eyes > Tearing > Ulceration > > If so, what does your dr. say when you complain about them? If any do fit > you, don't let them blame it on your having little ones, your life > style...read and learn here and get lab work done regularly if need be. > > I am glad that after 2 years you are doing good with your current treatment > and hopefully you will continue to do well and your dr. is keeping an eye on > things. There are some out there that do just fine and maybe you will be > one of them > > If you are pregnant (can't remember) or will be, make sure your FT3/FT4 are > checked to make sure you don't go hypO during pregnancy as it can cause some > problems for the baby and can make the baby hypO also. > > Anyhow, take care, read the archives, watch for hypO symptoms, especially if > you are expecting, it is important...and jump in with questions and > comments! > > Take care, > Jody > > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Hi Trish, I no longer take synthroid, it didn't work for me at any dose. I am currently on Armour Thyroid, it is natural rather than synthetic (from pigs) and it contains T3 and T4 as well as T1 and T2 but I have no idea what the last 2 do. The T3 is what has made all the difference in me. At least my mind works better than it had in a long time. As for the TSH...well this is my opinion, I need to stress that, others will jump in too I am sure...but it is a test of the Pituitary and is great for checking to see if there is a thyroid problem...but I have NO faith in them for regular checkups. My dr. also orders a TSH but now she is also giving me the FT3 (Free T3 and Free T4) tests that I have much more faith in to find out where I am, do I need my meds increased/decreased...and to eventually find the right dose for me. I don't think that is going to happen with Armour, not at this point so my personal goal is to get her to prescribe a compound of time released T3 and T4. It will take some time even then to find what will work for me. We are all different in what our bodies need, and one should keep that in mind. Hopefully Elaine will jump in here (please ;-) and explain these so much better than I can, exactly what the tests are/do etc. She has the background to do this. But you can read her articles on Suite 101 as well as her posts in the archives here. I don't know if every 6 months is what is needed or not. If you are doing well, then maybe it is. If, however, any of the hypo symptoms pertain to you, then, no a TSH and every six months is probably not enough. I will suggest that you begin reading the archives here and write down any questions you have, if you don't find the answers in the posts to follow, throw them out to group and someone can help. Also, if any of the eye symptoms in that list pertain to you, find an ophthalmologist who is familiar with treating GO and begin getting checked out NOW so there is a base line. My first endo told me I was fortunate I had no eye involvement. Five years later, I most certainly do and will see an optho next month. Read, be aware of what your body is telling you, and ask questions We are all in this together. Hope some of this helps. Take care, Jody _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Hi Tricia- TSH is not enough once you've had RAI. They should also be testing your thyroid hormone levels. Especially if you don't feel quite right. I was 24 when I had RAI. I was kept hypothyroid (for me) afterwards. Every woman in my family has a TSH ranging from 0.50-1.5. Mine was kept at 2.5-4.0. Once my thyroid completely died 6 years post-RAI, I really started having trouble. I was having swelling, muscle aches and pains, arthritis, " sick " fatigue, anxiety and panic attacks, acne, sleep apnea, dry, cracked and bleeding skin, digestive problems, neuropathies and infertility. Jeeps! I was only 30 years old at the time. I guess I could have had infertility anyways but no one in my family has that problem and they have babies late in life. I've been tested for ovarian reserve (oldness) and don't have any problems on that score. It took me almost 3 years to get pregnant with my first (6 years post-RAI) and now I'm still not having any luck and have been trying for 2 1/2 years. Most of the problems have cleared up or gotten better once I supplemented with T3. I had very low FT3 levels but had never been tested for that before. I was found to have trouble converting T4 (supplemental thyroid hormone) to T3 (active thyroid hormone) after RAI. It took many years to get as bad as it did. With my endo's blessing, I now have a TSH of <0.01 (N=0.35-5.50), FT3 = 4.2 (N=2.4-4.5), and FT4 = 1.66 (N=-0.75-2.00). We could not get my FT3 (or total T3) levels in the normal range relying upon my TSH. So I was hypothyroid before even though my TSH was mid-normal. It took me over 11 years to find this endo. I can't blame the other doctors because I thought the problems I was having were autoimmune in nature too and couldn't be treated. Take care, > Jody, > I get blood work done every 6 months right now, and I think its just > my TSH that gets checked. I'm wondering if what you're saying is that > some people still feel the effects of hypothyroidism even if they are > supposedly on the right amount of synthroid? And if so, why? > > I've always been under the impression that you just need to get the > right dose of synthroid to bring your TSH where it should be and > that's it, finito, with regular checks for necessary changes in > dosage. Is this not so? > > Thanks for welcoming me! > Trish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2001 Report Share Posted June 28, 2001 Trish, The TSH is a pituitary, not a thyroid hormone. In normal people with an intact pituitary-thyroid-hypothalamic network system, the TSH reflects how much thyroid hormone is in your blood. Once you have been hyperthyroid for some time, this network system does not always function properly. The TSH test is designed for diagnosing hypothyroid and hyperthyroidism but not necessarily for monitoring therapy. Blood levels of your thyroid hormones, T4 or FT4 and T3 or FT3 are better indicators of your thyroid hormone status. Many people who are monitored by TSH alone after RAI are actually hypothyroid despite having a normal TSH. The only way to tell is to have thyroid hormone levels tested. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2001 Report Share Posted June 28, 2001 HI Trish, Sorry you've got GD, but I am glad you are here because this is a good place and I hope your pregnancy goes well! F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2001 Report Share Posted June 29, 2001 , I'm not prego but thanks for welcoming me:o) Trish > HI Trish, > Sorry you've got GD, but I am glad you are here because this is a > good place and I hope your pregnancy goes well! > F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2003 Report Share Posted October 17, 2003 Hi : You did not post too much about your history or exactly where things are at with regard to your diagnosis. Perhaps you don't know yet. You are in the right place for information and its terrific that you are already motivated to find out, because the more knowledge you are armed with the better prepared you are to deal with your own situation. I see from another note that you've checked out the Links. One general article that is a good start is: http://www.curetoday.com/backissues/v1n4/feature/colon/index.html (This was posted on the Links by (who has so much knowledge) but no longer accessible when you click on it, I went to the main curetoday web site and just kind of found my way to it). This article talks about treatment options post surgery. Have you had surgery yet? It is so important that people who are first diagnosed know that finding an excellent surgeon is so important (again there is info on this sight about surgical techniques and lots of people more experienced than I who could answer questions about this). www.cancer.gov is a website you can use to find out about different clinical trials that are going on. You can do an advanced search in the clinical trials section and find out about trials close to you. This was an important starting point for us cause we were then able to ask the oncologist lots of questions. We asked for a second opinion at a major cancer treatment centre (Princess Margaret Hospital) in Toronto. My mom's oncologist was happy to refer her, and once we got the second opinion we returned closer to home, satisfied that that was the best place for her and feeling that (for now) her oncologist's treatment plan was the best. We were much more confident about the direction to go in after the second opinion. You mentioned that you are 70. Sounds like a young 70! Didn't mention anything about supports for the two of you or family. Hopefully your network is strong, but if you need more support (say for drives, house cleaning etc...) start asking now. The Cancer Society is a good place to start. There are some great programs in place. At least you'll know what's out there in case you need to call in an extra support later on. Just wanted to say to you that when we found out about my mom's colon cancer it was all very overwhelming at first. There is a lot of information to gather and sort through, and for us there were lots of up and down feelings that went along with that. Not to mention the up and down physical feelings that go along with the cancer, surgery etc. The info I am sending back is very general - there are lots of very informed and experienced people on this site - we are just beginning our journey with colon cancer (mom was diagnosed with stage 4 cancer metastasized throughout her abdominal cavity in August - she's 66). Wishing you all the best at the beginning of this difficult journey. Hope to see you again in the messages. Laurie P.S. Just wanted to also let you know that my mother and my two year old and I went pumpkin picking out at a farm today - enjoyed a hot apple cider and the beautiful fall colours. She's feeling very well after three courses of chemo and I notice her energy level seems to get better every day right now. Best wishes. > Hi all , my wife and i just found out that i have colon cancer.This > is all new to me , i have never been in a hospital in my life. I am > now 70 years of age. Any info for my wife and I would be greatly > appreaciate . Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2003 Report Share Posted October 17, 2003 Hello,my name is Nick, I am 72 and have had colon cancer since 1999. I have just recently started a new program with 5FU,LV,Oxy,and Avastin. I have had two ports. I do not have a bag,and I think here you will find many kind,wonderful,warm people with the same syptoms,in various stages all willing to share. Good luck. Have faith in yourself and believe you can lick this thing. Nick M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2003 Report Share Posted October 17, 2003 Kathy..that's good news. I keep asking my onc.,why not xeloda but he says try this ,i have fiath in him so I am going it his way. Your dad could be an inspiration to the man who just wrote,70,never been in a hospital and has colon cancer. Nick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2003 Report Share Posted October 18, 2003 Hi Nick -- How were you able to get Avastin? Barry > Hello,my name is Nick, I am 72 and have had colon cancer since 1999. I have > just recently started a new program with 5FU,LV,Oxy,and Avastin. I have had > two > ports. I do not have a bag,and I think here you will find many > kind,wonderful,warm > people with the same syptoms,in various stages all willing to share. Good > luck. > Have faith in yourself and believe you can lick this thing. Nick M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2003 Report Share Posted November 1, 2003 You need some time out, a little space,and to treat yourselves to a day or two somewhere. If that's not possible maybe someone can come in and give you a breather(say four hours or so once a week. Works wonders.Sometimes you have to vent,nothing wrong in that and it clears your system and lowers the blood pressure. You sound very together and up to date. Prayers and hugs Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 Kaye..there are a number of diferent ports. Since I am a man,I am not sure if a woman needs to be treated differently,or just where your cancers are. If they use a pump it would put a lot of stress on the veins but your concologist is more familiar with you,so he would know. perhaps another woman might offer more advice. Take care,prayers and peace Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 Hi , I think Donna S. might be able to help you out with a doctor name or two....you might also try searching some of her old posts as I think she may have posted some of this info ;o) If your brother's chemo has been keeping everything stable, I suspect most oncologists would recommend continuing his current course. Otherwise, Oxaliplatin is the usual " second line " chemo...and if that doesn't work, clinical trials would be an option. Best, > > I have been viewing messages from this group for 2 - 3 months and > have learned a lot from the shared information. I would like to ask > for input for my brother's treatment. So here goes... > > My 39 yr. old brother () was diagnosed on 08/2003 with colon > cancer. He has 9 tumors in his liver and two tiny tumors in his lung > as well. I guess this makes him stage IV. He started chemo (IFL?) > in Sept. 2003 and next week finishs his second " cylce " of this chemo > next Thursday. Sometime shortly after that his doctor wants to re- > scan to see the results of the chemo. After meeting with his current > doctor for the re-scan results, he is going to MD in > Houston, TX for another opinion on his treatment options. > > Can anyone recommend a doctor at the MD Anderons facility? At this > point he is going to MD via self-referral and is not > familiar with any doctors at MD . He may get a doctor's > referral, however his current doctor has been very unfriendly and we > are not sure he'll be helpful with a referral. > > Any suggestions regarding a clinical trial he might try to get into > or treatment options, treatment centers, etc.. will be greatly > appreciated. > > Quote Link to comment Share on other sites More sharing options...
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