Guest guest Posted July 15, 2001 Report Share Posted July 15, 2001 Angie, you are not alone. You will definitely succeed with your current attitude and all the wonderful people on this list backing you all the way. Barb -- Hello I am Angie and am restarting today. I had originally started back in February and lost 21 lbs in 3 weeks and went from a 26/28 to an 18/20. I however figured stupidly I could enjoy a carb here and there and have gained back + some. My restart is at 230lbs. My overall goal is 130lbs. I am 5'1". Medium frame. I need to make this a success for me and my 3 children, who need an active mommy in their lives not one who can't walk a block without being exhausted.Angie230/?/130Please visit our homepage at http://members.xoom.com/AChallengersYou will find information, recipes, before and after pictures.To contact any of the the list moderators, you can email them at:Joya (joya7@...), Kari (kari@...), Norma (norwood@...), JJ (cybercat@...), Dianne (lambert1@...) Visit our 2000 Train Tour Site - http://www.brunnet.net/k & l/web_site_train_tour/actraintour.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2001 Report Share Posted July 15, 2001 Welcome back home Angie! ) Been there and done that right along with you! As have several folks on this list! Do this for you! You must show those babes how a healthy woman takes care of herself so that they can model good behavior!!! (We have 4-1/2 year olds and I know first hand what you're talking about!) But --- most importantly --- welcome back! Now --- go for it, girl! Jane Hello > I am Angie and am restarting today. I had originally started back in > February and lost 21 lbs in 3 weeks and went from a 26/28 to an > 18/20. I however figured stupidly I could enjoy a carb here and there > and have gained back + some. My restart is at 230lbs. My overall goal > is 130lbs. I am 5'1 " . Medium frame. I need to make this a success for > me and my 3 children, who need an active mommy in their lives not one > who can't walk a block without being exhausted. > > > Angie > 230/?/130 > > > Please visit our homepage at http://members.xoom.com/AChallengers > You will find information, recipes, before and after pictures. > To contact any of the the list moderators, you can email them at: > Joya (joya7@...), Kari (kari@...), Norma (norwood@...), JJ (cybercat@...), Dianne (lambert1@...) > Visit our 2000 Train Tour Site - http://www.brunnet.net/k & l/web_site_train_tour/actraintour.htm > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 believe it or not there will be times that you will completely forget about the cancer, it may not happen for a year or two, until you get past the major parts of the treatment, but it will happen. if you have faith and are willing to ask for help when you need it, you are halfway there. sometimes it can be tough to be assertive with your doctors when you are tired from the treatments or hypothyroid, but you sound tenacious! if you want to correspond personally, i would be happy to. you can learn a little bit about me at www.pozar.com a site in continual remodeling! to you and all the other members of the thyclan good luck! > Dear KimMarie, > > Thank you so much for responding to my e-mail and for sharing what you have experienced. > I definetly need to get an oncologist for following-up. The radiation doctor just wanted me to > live my life and come back in a year for another scan. I don't feel comfortable with that. > Especially since I have had some complications with my voice and salivary glands/irregular > heart beats. I just wish I could get the fear of cancer out of my mind. It is like a burgular that > has broken into my house and intruded. How did you get beyond worrying? I am trying to > hold onto my faith in all of this. > > Thank you for your encouraging words! > Janet > Re: Hello > > > Janet, > I too had papillary and hashi's, problems with my voice and salivary > glands, etc. > > it has been 20 years since my first dx and even though i have had > waxing and waning times of not so great health, i have lived a happy > and full life. My son is raised, i have worked in construction and > forestry as well as teaching and management over the intervening > years and returned to college at the age of 38. > > I still lose my voice if i strain my voice too much and will never be > a professional singer, but i still love to sing and play guitar. I > have had dental problems over the years, possibly because of the > salivary damage,and have several crowns, but no removable plates. > > It took about 6 months for me to feel comfortable with my voice and > the pain to subside to a background level. > > The biggest mistake/regret/whatever was not following up on a yearly > checkup, but that was also a life choice. i was without insurance > for several years and just considered the cancer as the status quo. > It is something you need to be somewhat diligent about and one of > your challenges over your life will be to find a doctor that is > knowledgeable about this particular form of cancer. > > Janet, there are alot of us in this sisterhood/brotherhood that are > here to share with.... > > good luck > > KimMarie > > > > My name is Janet and 4 mos. ago I was diagnosed with Thyroid > Cancer. My thyroid was totally removed > > with 2 malignant masses in it. The follow up scan showed there was > still some remaining tissue left and > > last month I had the I-131 Radioactive thyroid ablation. The > follow up scan showed no evidence of thyroid > > tissue left. I also found out after I had my surgery, that I had > also had Hashimoto's thyroiditis. I never > > knew it. My voice is still affected by the surgery and also the > radiation and my salivary glands still hurt > > and I was wondering if this will heal up and go away. I also worry > that the radiation will cause other > > problems. Is there anyone out there they has the same concerns > or has experienced these problems > > also? I am also experiencing irregular heart beats and > palpitations. The doctor believes this may be > > caused by the thyroid also. Does it ever end????? > > > > Your friend, > > Janet > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 believe it or not there will be times that you will completely forget about the cancer, it may not happen for a year or two, until you get past the major parts of the treatment, but it will happen. if you have faith and are willing to ask for help when you need it, you are halfway there. sometimes it can be tough to be assertive with your doctors when you are tired from the treatments or hypothyroid, but you sound tenacious! if you want to correspond personally, i would be happy to. you can learn a little bit about me at www.pozar.com a site in continual remodeling! to you and all the other members of the thyclan good luck! > Dear KimMarie, > > Thank you so much for responding to my e-mail and for sharing what you have experienced. > I definetly need to get an oncologist for following-up. The radiation doctor just wanted me to > live my life and come back in a year for another scan. I don't feel comfortable with that. > Especially since I have had some complications with my voice and salivary glands/irregular > heart beats. I just wish I could get the fear of cancer out of my mind. It is like a burgular that > has broken into my house and intruded. How did you get beyond worrying? I am trying to > hold onto my faith in all of this. > > Thank you for your encouraging words! > Janet > Re: Hello > > > Janet, > I too had papillary and hashi's, problems with my voice and salivary > glands, etc. > > it has been 20 years since my first dx and even though i have had > waxing and waning times of not so great health, i have lived a happy > and full life. My son is raised, i have worked in construction and > forestry as well as teaching and management over the intervening > years and returned to college at the age of 38. > > I still lose my voice if i strain my voice too much and will never be > a professional singer, but i still love to sing and play guitar. I > have had dental problems over the years, possibly because of the > salivary damage,and have several crowns, but no removable plates. > > It took about 6 months for me to feel comfortable with my voice and > the pain to subside to a background level. > > The biggest mistake/regret/whatever was not following up on a yearly > checkup, but that was also a life choice. i was without insurance > for several years and just considered the cancer as the status quo. > It is something you need to be somewhat diligent about and one of > your challenges over your life will be to find a doctor that is > knowledgeable about this particular form of cancer. > > Janet, there are alot of us in this sisterhood/brotherhood that are > here to share with.... > > good luck > > KimMarie > > > > My name is Janet and 4 mos. ago I was diagnosed with Thyroid > Cancer. My thyroid was totally removed > > with 2 malignant masses in it. The follow up scan showed there was > still some remaining tissue left and > > last month I had the I-131 Radioactive thyroid ablation. The > follow up scan showed no evidence of thyroid > > tissue left. I also found out after I had my surgery, that I had > also had Hashimoto's thyroiditis. I never > > knew it. My voice is still affected by the surgery and also the > radiation and my salivary glands still hurt > > and I was wondering if this will heal up and go away. I also worry > that the radiation will cause other > > problems. Is there anyone out there they has the same concerns > or has experienced these problems > > also? I am also experiencing irregular heart beats and > palpitations. The doctor believes this may be > > caused by the thyroid also. Does it ever end????? > > > > Your friend, > > Janet > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 believe it or not there will be times that you will completely forget about the cancer, it may not happen for a year or two, until you get past the major parts of the treatment, but it will happen. if you have faith and are willing to ask for help when you need it, you are halfway there. sometimes it can be tough to be assertive with your doctors when you are tired from the treatments or hypothyroid, but you sound tenacious! if you want to correspond personally, i would be happy to. you can learn a little bit about me at www.pozar.com a site in continual remodeling! to you and all the other members of the thyclan good luck! > Dear KimMarie, > > Thank you so much for responding to my e-mail and for sharing what you have experienced. > I definetly need to get an oncologist for following-up. The radiation doctor just wanted me to > live my life and come back in a year for another scan. I don't feel comfortable with that. > Especially since I have had some complications with my voice and salivary glands/irregular > heart beats. I just wish I could get the fear of cancer out of my mind. It is like a burgular that > has broken into my house and intruded. How did you get beyond worrying? I am trying to > hold onto my faith in all of this. > > Thank you for your encouraging words! > Janet > Re: Hello > > > Janet, > I too had papillary and hashi's, problems with my voice and salivary > glands, etc. > > it has been 20 years since my first dx and even though i have had > waxing and waning times of not so great health, i have lived a happy > and full life. My son is raised, i have worked in construction and > forestry as well as teaching and management over the intervening > years and returned to college at the age of 38. > > I still lose my voice if i strain my voice too much and will never be > a professional singer, but i still love to sing and play guitar. I > have had dental problems over the years, possibly because of the > salivary damage,and have several crowns, but no removable plates. > > It took about 6 months for me to feel comfortable with my voice and > the pain to subside to a background level. > > The biggest mistake/regret/whatever was not following up on a yearly > checkup, but that was also a life choice. i was without insurance > for several years and just considered the cancer as the status quo. > It is something you need to be somewhat diligent about and one of > your challenges over your life will be to find a doctor that is > knowledgeable about this particular form of cancer. > > Janet, there are alot of us in this sisterhood/brotherhood that are > here to share with.... > > good luck > > KimMarie > > > > My name is Janet and 4 mos. ago I was diagnosed with Thyroid > Cancer. My thyroid was totally removed > > with 2 malignant masses in it. The follow up scan showed there was > still some remaining tissue left and > > last month I had the I-131 Radioactive thyroid ablation. The > follow up scan showed no evidence of thyroid > > tissue left. I also found out after I had my surgery, that I had > also had Hashimoto's thyroiditis. I never > > knew it. My voice is still affected by the surgery and also the > radiation and my salivary glands still hurt > > and I was wondering if this will heal up and go away. I also worry > that the radiation will cause other > > problems. Is there anyone out there they has the same concerns > or has experienced these problems > > also? I am also experiencing irregular heart beats and > palpitations. The doctor believes this may be > > caused by the thyroid also. Does it ever end????? > > > > Your friend, > > Janet > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 janet. i am just now having my first one year body scan. i was excactly where you are just last year! it does take a long time to gain " trust " in medicane. i have blood tests every 6 months to moniter the level. i have had one clean scan hence going to once a year. but a mid year check up with monitering blood test. i also had severe saliva gland reactions. mailny in my cheecks. painful does not do justice to that situation. i did have a ent prescribe me a med that creates saliva and she also showed me how to massage the areas...this did bring great relief. ginger tea also! and yes sour candy gets old! a;; of this subsided after a few months... and the voice! i had a voice test done before my surgery so in case of voice problems. i write this with a smile! the guy patted my hand and said the surgeon, the head of endo surgey at lotola, had never sent him back a patient with voice problems....well, after surgery i was fine....they said use your voice as normal,don't baby it. so i did as they said. but! all of my work is done over the phone, i never yell at home, i never usually talk above a phone tone! i in essence was not excercising my voice. this part, 2 1/2 weeks, was extremely frightening for me as i actually lost my voice! they were amazed and i had the beegies scared out of me! i was actually checking artifical voices that could be done!!! well, they had my voice test, we visited, we figured out it was that i did not actually " use " my voice...so 3 times a day, 10 minues at a time i had to exercise the voice! how funny!!!! but i have it back, i do still have some gravely type voice, but will always have that. which is ok as i never had a signing career planned!! you are still in a very hard stage of this. you are still recovering, you probably actually are just starting to feel physically strong. now the mind and the heart needs to come into this. keep comfort from everyone ...insist on the blood test guidleines. i am sure there is somewhere here in this web page a " guideline " for suggested testing. it is like taking the training wheels off a bike. you have to just trust. but do your homework , be active in your care, and pull back into " normal " life! it takes a lot to do that. cancer is extremely frightening. i have the motto,( right now i am hypo for my scan) that it could be worse...but remember that you have a very good cancer to deal with. Re: Hello Janet, I too had papillary and hashi's, problems with my voice and salivary glands, etc. it has been 20 years since my first dx and even though i have had waxing and waning times of not so great health, i have lived a happy and full life. My son is raised, i have worked in construction and forestry as well as teaching and management over the intervening years and returned to college at the age of 38. I still lose my voice if i strain my voice too much and will never be a professional singer, but i still love to sing and play guitar. I have had dental problems over the years, possibly because of the salivary damage,and have several crowns, but no removable plates. It took about 6 months for me to feel comfortable with my voice and the pain to subside to a background level. The biggest mistake/regret/whatever was not following up on a yearly checkup, but that was also a life choice. i was without insurance for several years and just considered the cancer as the status quo. It is something you need to be somewhat diligent about and one of your challenges over your life will be to find a doctor that is knowledgeable about this particular form of cancer. Janet, there are alot of us in this sisterhood/brotherhood that are here to share with.... good luck KimMarie > My name is Janet and 4 mos. ago I was diagnosed with Thyroid Cancer. My thyroid was totally removed > with 2 malignant masses in it. The follow up scan showed there was still some remaining tissue left and > last month I had the I-131 Radioactive thyroid ablation. The follow up scan showed no evidence of thyroid > tissue left. I also found out after I had my surgery, that I had also had Hashimoto's thyroiditis. I never > knew it. My voice is still affected by the surgery and also the radiation and my salivary glands still hurt > and I was wondering if this will heal up and go away. I also worry that the radiation will cause other > problems. Is there anyone out there they has the same concerns or has experienced these problems > also? I am also experiencing irregular heart beats and palpitations. The doctor believes this may be > caused by the thyroid also. Does it ever end????? > > Your friend, > Janet > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 janet. i am just now having my first one year body scan. i was excactly where you are just last year! it does take a long time to gain " trust " in medicane. i have blood tests every 6 months to moniter the level. i have had one clean scan hence going to once a year. but a mid year check up with monitering blood test. i also had severe saliva gland reactions. mailny in my cheecks. painful does not do justice to that situation. i did have a ent prescribe me a med that creates saliva and she also showed me how to massage the areas...this did bring great relief. ginger tea also! and yes sour candy gets old! a;; of this subsided after a few months... and the voice! i had a voice test done before my surgery so in case of voice problems. i write this with a smile! the guy patted my hand and said the surgeon, the head of endo surgey at lotola, had never sent him back a patient with voice problems....well, after surgery i was fine....they said use your voice as normal,don't baby it. so i did as they said. but! all of my work is done over the phone, i never yell at home, i never usually talk above a phone tone! i in essence was not excercising my voice. this part, 2 1/2 weeks, was extremely frightening for me as i actually lost my voice! they were amazed and i had the beegies scared out of me! i was actually checking artifical voices that could be done!!! well, they had my voice test, we visited, we figured out it was that i did not actually " use " my voice...so 3 times a day, 10 minues at a time i had to exercise the voice! how funny!!!! but i have it back, i do still have some gravely type voice, but will always have that. which is ok as i never had a signing career planned!! you are still in a very hard stage of this. you are still recovering, you probably actually are just starting to feel physically strong. now the mind and the heart needs to come into this. keep comfort from everyone ...insist on the blood test guidleines. i am sure there is somewhere here in this web page a " guideline " for suggested testing. it is like taking the training wheels off a bike. you have to just trust. but do your homework , be active in your care, and pull back into " normal " life! it takes a lot to do that. cancer is extremely frightening. i have the motto,( right now i am hypo for my scan) that it could be worse...but remember that you have a very good cancer to deal with. Re: Hello Janet, I too had papillary and hashi's, problems with my voice and salivary glands, etc. it has been 20 years since my first dx and even though i have had waxing and waning times of not so great health, i have lived a happy and full life. My son is raised, i have worked in construction and forestry as well as teaching and management over the intervening years and returned to college at the age of 38. I still lose my voice if i strain my voice too much and will never be a professional singer, but i still love to sing and play guitar. I have had dental problems over the years, possibly because of the salivary damage,and have several crowns, but no removable plates. It took about 6 months for me to feel comfortable with my voice and the pain to subside to a background level. The biggest mistake/regret/whatever was not following up on a yearly checkup, but that was also a life choice. i was without insurance for several years and just considered the cancer as the status quo. It is something you need to be somewhat diligent about and one of your challenges over your life will be to find a doctor that is knowledgeable about this particular form of cancer. Janet, there are alot of us in this sisterhood/brotherhood that are here to share with.... good luck KimMarie > My name is Janet and 4 mos. ago I was diagnosed with Thyroid Cancer. My thyroid was totally removed > with 2 malignant masses in it. The follow up scan showed there was still some remaining tissue left and > last month I had the I-131 Radioactive thyroid ablation. The follow up scan showed no evidence of thyroid > tissue left. I also found out after I had my surgery, that I had also had Hashimoto's thyroiditis. I never > knew it. My voice is still affected by the surgery and also the radiation and my salivary glands still hurt > and I was wondering if this will heal up and go away. I also worry that the radiation will cause other > problems. Is there anyone out there they has the same concerns or has experienced these problems > also? I am also experiencing irregular heart beats and palpitations. The doctor believes this may be > caused by the thyroid also. Does it ever end????? > > Your friend, > Janet > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 janet. i am just now having my first one year body scan. i was excactly where you are just last year! it does take a long time to gain " trust " in medicane. i have blood tests every 6 months to moniter the level. i have had one clean scan hence going to once a year. but a mid year check up with monitering blood test. i also had severe saliva gland reactions. mailny in my cheecks. painful does not do justice to that situation. i did have a ent prescribe me a med that creates saliva and she also showed me how to massage the areas...this did bring great relief. ginger tea also! and yes sour candy gets old! a;; of this subsided after a few months... and the voice! i had a voice test done before my surgery so in case of voice problems. i write this with a smile! the guy patted my hand and said the surgeon, the head of endo surgey at lotola, had never sent him back a patient with voice problems....well, after surgery i was fine....they said use your voice as normal,don't baby it. so i did as they said. but! all of my work is done over the phone, i never yell at home, i never usually talk above a phone tone! i in essence was not excercising my voice. this part, 2 1/2 weeks, was extremely frightening for me as i actually lost my voice! they were amazed and i had the beegies scared out of me! i was actually checking artifical voices that could be done!!! well, they had my voice test, we visited, we figured out it was that i did not actually " use " my voice...so 3 times a day, 10 minues at a time i had to exercise the voice! how funny!!!! but i have it back, i do still have some gravely type voice, but will always have that. which is ok as i never had a signing career planned!! you are still in a very hard stage of this. you are still recovering, you probably actually are just starting to feel physically strong. now the mind and the heart needs to come into this. keep comfort from everyone ...insist on the blood test guidleines. i am sure there is somewhere here in this web page a " guideline " for suggested testing. it is like taking the training wheels off a bike. you have to just trust. but do your homework , be active in your care, and pull back into " normal " life! it takes a lot to do that. cancer is extremely frightening. i have the motto,( right now i am hypo for my scan) that it could be worse...but remember that you have a very good cancer to deal with. Re: Hello Janet, I too had papillary and hashi's, problems with my voice and salivary glands, etc. it has been 20 years since my first dx and even though i have had waxing and waning times of not so great health, i have lived a happy and full life. My son is raised, i have worked in construction and forestry as well as teaching and management over the intervening years and returned to college at the age of 38. I still lose my voice if i strain my voice too much and will never be a professional singer, but i still love to sing and play guitar. I have had dental problems over the years, possibly because of the salivary damage,and have several crowns, but no removable plates. It took about 6 months for me to feel comfortable with my voice and the pain to subside to a background level. The biggest mistake/regret/whatever was not following up on a yearly checkup, but that was also a life choice. i was without insurance for several years and just considered the cancer as the status quo. It is something you need to be somewhat diligent about and one of your challenges over your life will be to find a doctor that is knowledgeable about this particular form of cancer. Janet, there are alot of us in this sisterhood/brotherhood that are here to share with.... good luck KimMarie > My name is Janet and 4 mos. ago I was diagnosed with Thyroid Cancer. My thyroid was totally removed > with 2 malignant masses in it. The follow up scan showed there was still some remaining tissue left and > last month I had the I-131 Radioactive thyroid ablation. The follow up scan showed no evidence of thyroid > tissue left. I also found out after I had my surgery, that I had also had Hashimoto's thyroiditis. I never > knew it. My voice is still affected by the surgery and also the radiation and my salivary glands still hurt > and I was wondering if this will heal up and go away. I also worry that the radiation will cause other > problems. Is there anyone out there they has the same concerns or has experienced these problems > also? I am also experiencing irregular heart beats and palpitations. The doctor believes this may be > caused by the thyroid also. Does it ever end????? > > Your friend, > Janet > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 Hi, Janet, and welcome! > > I definetly need to get an oncologist for following-up. The > radiation doctor just wanted me to > live my life and come back in a year for another scan. I don't feel > comfortable with that. Having your next scan in 6 months to a year is standard protocol, since it takes that long for the initial RAI to do its work. However, are you being followed by an endocrinologist? Most of us don't see oncologists because they are not usually the ones who deal with this type of cancer (treatment is very different from most other cancers). The radiation docs usually only get involved when we have scans or treatments. > Especially since I have had some complications with my voice and > salivary glands/irregular heart beats. As Rodrigo said, the heartbeat irregularity may be from being hyper (too much T4/too low a TSH). Do you know what your TSH is? The endo should check your T4 levels every 6-8 weeks until your TSH is at the right level (usually < 0.1). > I just wish I could get the fear of cancer out of my mind. It is > like a burgular that has broken into my house and intruded. That's a great analogy! > How did you get beyond worrying? Part of it is a matter of time. This is a very scary thing to go through! Another is to realize that this is a very treatable cancer, and even if it DOES recur, it is generally a local recurrence that can be re-treated. Hang in there, it does get better - the first year is usually the hardest, and it hasn't been all that long since your dx. At your point, my head was still spinning - this is a lot to take in and deal with. Hang in there! Another few comments: Having Hashimotos means you may have TG antibodies, which make the TG levels unreliable as a cancer marker. Just be aware of that - when they test your TG, they should also test for antibodies. In case you aren't doing this yet, I recommend that you get copies of all your records for your files. Cheers, Alisa Currently - TSH 0.09, 140mcg Levoxyl 2/15/2002: Nodule found 2/27/2002: FNA 3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!! 4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos 5/28/2002: 100 mCi RAI 12/16/02: WBS (5 mCi): clean scan - no thyroid tissue in body!!! Age: 49 -- Location: near Seattle WA --- Check out my posts: Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472 My LID - http://groups.yahoo.com/group/Thyca/message/15872 My RAI - http://groups.yahoo.com/group/Thyca/message/15873 LID stuff - http://groups.yahoo.com/group/Thyca/message/25430 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2003 Report Share Posted March 9, 2003 Hi, Janet, and welcome! > > I definetly need to get an oncologist for following-up. The > radiation doctor just wanted me to > live my life and come back in a year for another scan. I don't feel > comfortable with that. Having your next scan in 6 months to a year is standard protocol, since it takes that long for the initial RAI to do its work. However, are you being followed by an endocrinologist? Most of us don't see oncologists because they are not usually the ones who deal with this type of cancer (treatment is very different from most other cancers). The radiation docs usually only get involved when we have scans or treatments. > Especially since I have had some complications with my voice and > salivary glands/irregular heart beats. As Rodrigo said, the heartbeat irregularity may be from being hyper (too much T4/too low a TSH). Do you know what your TSH is? The endo should check your T4 levels every 6-8 weeks until your TSH is at the right level (usually < 0.1). > I just wish I could get the fear of cancer out of my mind. It is > like a burgular that has broken into my house and intruded. That's a great analogy! > How did you get beyond worrying? Part of it is a matter of time. This is a very scary thing to go through! Another is to realize that this is a very treatable cancer, and even if it DOES recur, it is generally a local recurrence that can be re-treated. Hang in there, it does get better - the first year is usually the hardest, and it hasn't been all that long since your dx. At your point, my head was still spinning - this is a lot to take in and deal with. Hang in there! Another few comments: Having Hashimotos means you may have TG antibodies, which make the TG levels unreliable as a cancer marker. Just be aware of that - when they test your TG, they should also test for antibodies. In case you aren't doing this yet, I recommend that you get copies of all your records for your files. Cheers, Alisa Currently - TSH 0.09, 140mcg Levoxyl 2/15/2002: Nodule found 2/27/2002: FNA 3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!! 4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos 5/28/2002: 100 mCi RAI 12/16/02: WBS (5 mCi): clean scan - no thyroid tissue in body!!! Age: 49 -- Location: near Seattle WA --- Check out my posts: Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472 My LID - http://groups.yahoo.com/group/Thyca/message/15872 My RAI - http://groups.yahoo.com/group/Thyca/message/15873 LID stuff - http://groups.yahoo.com/group/Thyca/message/25430 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Hi , Did you mean glomerulonecrosis, or glomerulosclerosis? The second is the common finding in IgAN biopsies. Good luck with your appointment on the 11th. Pierre P.S. Dialysis today, and it will be time, because I just ate a footlong Quiznos meatball sub : ) ... it's Ok though, because it's blood work night, and my dietician said to eat a bit more potassium to see what it does. I've got room to eat more than I have, but it's impossible to say exactly. You have to go by trial and error, a little more at a time. At least I won't be malnourished :-) Hello > > I was going to say I'm not sure if this is the same thing but When they did my biopsy 2 weeks ago, They found Glomerulnecrosis Which means I have some damage done to my kidneys, I to am still learning about all this, I go back to the doctor on the 11th, To talk more about it and discuss taking prednesone, I'm on fish oil and Blood pressure meds For The IGA. So this is the beginning for me to. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Quiznos meatball sub is definitely very tasty, I can attest to that. : ) Sophia > P.S. Dialysis today, and it will be time, because I just ate a footlong > Quiznos meatball sub : ) ... it's Ok though, because it's blood work > night, and my dietician said to eat a bit more potassium to see what it > does. I've got room to eat more than I have, but it's impossible to say > exactly. You have to go by trial and error, a little more at a time. At > least I won't be malnourished :-) > > Hello > > > > > > I was going to say I'm not sure if this is the same thing but When they > did my biopsy 2 weeks ago, They found Glomerulnecrosis Which means I have > some damage done to my kidneys, I to am still learning about all this, I go > back to the doctor on the 11th, To talk more about it and discuss taking > prednesone, I'm on fish oil and Blood pressure meds For The IGA. So this is > the beginning for me to. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Quiznos meatball sub is definitely very tasty, I can attest to that. : ) Sophia > P.S. Dialysis today, and it will be time, because I just ate a footlong > Quiznos meatball sub : ) ... it's Ok though, because it's blood work > night, and my dietician said to eat a bit more potassium to see what it > does. I've got room to eat more than I have, but it's impossible to say > exactly. You have to go by trial and error, a little more at a time. At > least I won't be malnourished :-) > > Hello > > > > > > I was going to say I'm not sure if this is the same thing but When they > did my biopsy 2 weeks ago, They found Glomerulnecrosis Which means I have > some damage done to my kidneys, I to am still learning about all this, I go > back to the doctor on the 11th, To talk more about it and discuss taking > prednesone, I'm on fish oil and Blood pressure meds For The IGA. So this is > the beginning for me to. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 beth: This is pretty interesting information - my six year old son was just diagnosed with IgA - on top of the Iga - He was born 3 months early due to me having preeclampsia. Do you think there is any link - as far as I know I have never had any kidney problems except during his birth. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 Dear Amy J., Hello, and welcome! I am so glad that you had your three children without any complications- that's great! With kidney disease your risk for preeclampsia is times 4. However, if you are properly monitored usually there is no problem with pregnancy, especially in the early stages of the disease. It sounds like that's what happened in your case. It's normal for protein ect to go up when you're pregnant, and fluctuate a little afterwards- with each kid mine went up, but my kidneys stayed at 100% function (I have 2). Being serious about the disease just means to be monitored for blood and/or protein, and high blood pressure. The swelling seems to go hand in hand with the protein leakage. Some BP medicines (ACE inhibitors or ARBs) keep BP in check and also reduce proteinuria. Other than that, exercise and a well balanced diet are good for the kidneys,. That's about it though! You live a pretty normal life, and it's usually not that bad. My kids have no sign of kidney disease but just in case they are seen by a pediatric neph once a year. IgAn is usually not heriditary, but I also have thin basement membrane which is? Anyway it's just for peace of mind. As for flank pain, I haven't had that, but many here have- I'm sure you'll hear more about it! Best wishes and welcome again, -beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 Hi Amy J Welcome to the group. I see beth already replied to your message, so, not much I can add. Don't hesitate to check out www.igan.ca if you haven't already. Pierre Hello > > Hi my name is Amy (guess I can go by Amy J). I was diagnosed with IgAN in January of 2002 following a biopsy. We first saw there was a problem when I was pregnant with my first son in '95. I had proteinuria and of course was considered high risk for preeclampsia. They were supposed to follow up on it after the pregnancy but that kind of fell through and all was forgotten until I became pregnant with my daughter in Jan '99. Again, high risk with the protein and such but again I never developed preeclampsia and everything again went fine. Following this pregnancy they did begin digging around trying to find out what was going on. I am sure I have peed almost a year's worth of 24 hour urines!! You need to know that we are a military family and so we do not always get the most direct route to the care we need. Finally in late 2001 I was referred to a nephrologist who got the ball rolling. Following a biopsy in the beginning of 2002, I was diagnosed with the disease and shortly after that got pregnant again! (the doctor thought I was crazy for wanting another child but did say it was okay). This pregnancy I was not given the " royal treatment " as a high risk patient and again, everything went fine. However, with 3 kids, my health went on the back burner and I did not return to the nephrologist until about 2 months ago (the last time I saw him was Sept. 02, just before the baby was born). My protein has increased and I believe I am beginning to see symptoms. I get swelling in my ankles quite frequently. I am taking fish oil (but had let that drop for quite some time as when I was taking it during my pregnancy it seemed to make me itchy!!). I am also experiencing flank pain at night which I believe is connected to this as it is worse if I haven't had enough water to drink the day before or if I slack off on the fish oil. Anybody else experiencing that? My husband thinks the flank pain is from our mattress as he says his back hurts too, but the pain is relieved a little after I urinate in the morning and as I said it's not as noticeable if I'm up on water intake and fish oil. > > Anyway, sorry I rambled on, just wanted to introduce myself. I'm rather shocked to find myself on a support group, but being 38, I'm realizing I need to get serious about this disease!! > > Amy J. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 Hi , Spilling larger amounts of protein during pregnancy can be consistent with IgAN. In your case though if I understand correctly, you do not have IgAN, but your son does. There is no link between the mother having preeclampsia and the child have IgAN as far as I know though. In a message dated 1/8/2005 4:57:27 PM Pacific Standard Time, abita966@... writes: > > This is pretty interesting information - my six year old son was just > diagnosed with IgA - on top of the Iga - He was born 3 months early due to > me > having preeclampsia. Do you think there is any link - as far as I know I > have > never had any kidney problems except during his birth. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 Hi , I know that seeing visible blood in your son's urine is very scary, but in truth it is really only a very small amount of blood that is needed to turn the blood so dark. I don't recall what his labs are as far as his creatinine level, but if those tests show him in the normal range, 6 month follow-ups are pretty standard, except that it would be important to be seen if he has any flare-ups in between. For many years I only saw my Neph once a year, then many more years every six months. There is not really anything medically they can do in terms of intervention except making sure the BP stays down and that proteinuria does not increase too much. I understand how hard it is to do nothing and how helpless you can feel as a mother. I guess one way to look at it is to count your blessings that he is stable enough to only need to be monitored every six months. I would definitely let his doctor know any time you see gross hematuria though. In a message dated 1/9/2005 2:30:13 PM Pacific Standard Time, abita966@... writes: > As for my son - we started noticing his urine was dark colored - found out > > it contained a lot of blood, there was no other signs - so we went ahead > with > the biopsy as the blood was consistent over several months (went from gross > > hematuria to microscopic) > > Anyway - that is where we are now - I am trying to figure out what exactly > I > should do - the neph told me all we needed to do was get an appointment in 6 > > months and follow-up with more bloodwork and labs - I feel so helpless! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2005 Report Share Posted January 9, 2005 Welcome Amy J- Sorry you're here, but glad you found us. (no last letter, still only one of us) PS - I am also 38, one year out from tx. Jajliardo Family wrote: Hi my name is Amy (guess I can go by Amy J). I was diagnosed with IgAN in January of 2002 following a biopsy. We first saw there was a problem when I was pregnant with my first son in '95. I had proteinuria and of course was considered high risk for preeclampsia. They were supposed to follow up on it after the pregnancy but that kind of fell through and all was forgotten until I became pregnant with my daughter in Jan '99. Again, high risk with the protein and such but again I never developed preeclampsia and everything again went fine. Following this pregnancy they did begin digging around trying to find out what was going on. I am sure I have peed almost a year's worth of 24 hour urines!! You need to know that we are a military family and so we do not always get the most direct route to the care we need. Finally in late 2001 I was referred to a nephrologist who got the ball rolling. Following a biopsy in the beginning of 2002, I was diagnosed with the disease and shortly after that got pregnant again! (the doctor thought I was crazy for wanting another child but did say it was okay). This pregnancy I was not given the " royal treatment " as a high risk patient and again, everything went fine. However, with 3 kids, my health went on the back burner and I did not return to the nephrologist until about 2 months ago (the last time I saw him was Sept. 02, just before the baby was born). My protein has increased and I believe I am beginning to see symptoms. I get swelling in my ankles quite frequently. I am taking fish oil (but had let that drop for quite some time as when I was taking it during my pregnancy it seemed to make me itchy!!). I am also experiencing flank pain at night which I believe is connected to this as it is worse if I haven't had enough water to drink the day before or if I slack off on the fish oil. Anybody else experiencing that? My husband thinks the flank pain is from our mattress as he says his back hurts too, but the pain is relieved a little after I urinate in the morning and as I said it's not as noticeable if I'm up on water intake and fish oil. Anyway, sorry I rambled on, just wanted to introduce myself. I'm rather shocked to find myself on a support group, but being 38, I'm realizing I need to get serious about this disease!! Amy J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 glad to hear your going to the doctor, keep us posted.Barb wrote: My back hurts because of having to put all my weight on my left foot. I have a walking cane somewhere around here that my mom gave me for my 50th birthday. I sure could use it. I'm going tomorrow morning to see a doctor. Barb Re: Hello Barb, I hope your knee feels better soon. Did it affect your back at all? I hope not. Take it easy and call the doctor if it doesn't get better, don't wait too long... Gail __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Barb, Hope things go well at the doctor. Keep us posted on how things go! Coco Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 Thanks, Doni. Some of the swelling has gone down, but some of it is still numb. I don't know what's the cause of that. I'm still hobbling around because it still hurts when I walk on it. Barb Re: Hello Barb, I am glad to hear the swelling has gone down in your knee. Hopefully you won't need a trip to the ER. Keep us posted on how you are doing! Coco font is Tombola No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.322 / Virus Database: 266.11.17 - Release Date: 5/25/2005 Font: SandyTextHMK No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.322 / Virus Database: 266.11.17 - Release Date: 5/25/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 Thanks, Doni. Some of the swelling has gone down, but some of it is still numb. I don't know what's the cause of that. I'm still hobbling around because it still hurts when I walk on it. Barb Re: Hello Barb, I am glad to hear the swelling has gone down in your knee. Hopefully you won't need a trip to the ER. Keep us posted on how you are doing! Coco font is Tombola No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.322 / Virus Database: 266.11.17 - Release Date: 5/25/2005 Font: SandyTextHMK No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.322 / Virus Database: 266.11.17 - Release Date: 5/25/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2006 Report Share Posted May 30, 2006 Sharon, I got it too. I just emailed the person and told them they must have set their account up to receive email and to let me know if they want to go special notices only or just read in the group. This person posted today I believe it was. Hmmmmm. Hugs nne Breast Cancer Patients Soul Mates for Lifehttp://www.geocities.com/chucky5741/breastcancerpatients.htmlCheck out my other ornaments atwww.geocities.com/chucky5741/bcornament.htmlLots of info and gifts at:www.cancerclub.comCinDWood Craftshttp://www.cindwoodcrafts.com re: Hello Hi nne, I just received an email that I sent to via breastcancer2 and the person said to stop emailing that address. It seemed weird as I use the breast cancer address. What do you think? I will forward it to you. Sharon C SHARON COLEY DIRECTOR OF SALES DOUBLETREE HOTEL LOS ANGELES/ROSEMEAD 888 MONTEBELLO BLVD. ROSEMEAD, CA 91770 Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Yahoo! Messenger with Voice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2006 Report Share Posted May 30, 2006 Sharon, I got it too. I just emailed the person and told them they must have set their account up to receive email and to let me know if they want to go special notices only or just read in the group. This person posted today I believe it was. Hmmmmm. Hugs nne Breast Cancer Patients Soul Mates for Lifehttp://www.geocities.com/chucky5741/breastcancerpatients.htmlCheck out my other ornaments atwww.geocities.com/chucky5741/bcornament.htmlLots of info and gifts at:www.cancerclub.comCinDWood Craftshttp://www.cindwoodcrafts.com re: Hello Hi nne, I just received an email that I sent to via breastcancer2 and the person said to stop emailing that address. It seemed weird as I use the breast cancer address. What do you think? I will forward it to you. Sharon C SHARON COLEY DIRECTOR OF SALES DOUBLETREE HOTEL LOS ANGELES/ROSEMEAD 888 MONTEBELLO BLVD. ROSEMEAD, CA 91770 Ring'em or ping'em. Make PC-to-phone calls as low as 1¢/min with Yahoo! Messenger with Voice. Quote Link to comment Share on other sites More sharing options...
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