Has anyone had any reoccurence - I'm scared!

Swtkoolaid
Swtkoolaid Member Posts: 53
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I have been a Hodgkins survivor for 9 years and just recently have had swollen glands and the doc found a nodule on my thyroid (hypo). Ever since he said I had swollen glands I began itching, not as severe as the first go round, but I have that nagging stinging feeling that moves around... could this just be my mind playing games? I have a bad feeling. What are the odds to beat this disease again if it has reared its ugly head again? I'm worried and scared. Any advise, suggestions, jokes ect.... I see my onco on the 15th of November. Seems like a million years away! :( I'm new to this board, just today.
«13

Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
    Don't worry you won't hear any jokes from me. I used to joke and talk a little trash, but not anymore. It cut my posts way down since I got called on it. You asked if it could be your imagination. Ever notice when you see bugs how it makes you feel itchy? Knowing the symtoms that lymphoma exhibits could very well be what you are experiencing,but I would not take that as sound advice. You may actually be having the itching because the symtom is really there and causing you to feel itchy. You really need to have it checked out. This stuff does have the tendency to come back. I am just out of treatment and in remission, but know they say it can come back with the indolent type. Its not always the case but it can show its ugly face again.I know you are scared but you have to have it checked to put it back under control if it has returned. John (FNHL-1-4A-5/10)
  • Swtkoolaid
    Swtkoolaid Member Posts: 53
    #3
    COBRA666 said:

    Don't worry you won't hear any jokes from me. I used to joke and talk a little trash, but not anymore. It cut my posts way down since I got called on it. You asked if it could be your imagination. Ever notice when you see bugs how it makes you feel itchy? Knowing the symtoms that lymphoma exhibits could very well be what you are experiencing,but I would not take that as sound advice. You may actually be having the itching because the symtom is really there and causing you to feel itchy. You really need to have it checked out. This stuff does have the tendency to come back. I am just out of treatment and in remission, but know they say it can come back with the indolent type. Its not always the case but it can show its ugly face again.I know you are scared but you have to have it checked to put it back under control if it has returned. John (FNHL-1-4A-5/10)

    Thanks for your comments and
    Thanks for your comments and thats too bad that you are not allowed to joke around anymore! LOL... whats that old saying "laughter is the best medicine"....Well I know that I itch so its not my imagination and I'm hoping for the best. I see the thyroid doc on the 9th for the u/s results for the nodule he found and I will see if he has any wise words about the nodes he felt as they did a full neck u/s on me. My post-hodgkins anxiety had me running to my oncologist. I made an appt right away which is the 15th. Not so much a right away feeling when you have to wait! I know by now he has gotten my neck u/s report because I told them to send it to him, but no phone call so maybe no news is good news? Again I'm hoping. I was told too during treatments that it can come back. I'm just feeling anxious and panicky (sp?) and of course this just makes all the aches pains and itchiness worse! But want to thank you for writing me. It helps to talk to someone that is going through all this. My first bout of hodgkins I really didn't have anyone to talk to that "really" understood what we go through. I'm blessed I have a caring helpful family who really got me through the bumps in the road. But again its nice to be able to talk to others who are actually dealing or dealt with all this. I'm glad to hear you are in remission and done with those nasty treatments. I wish you the best of health each and everyday. Come back and talk if you want to... I know I'm going to need all the help I can get. I'm glad I found this place :)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #4
    Swtkoolaid said:

    Thanks for your comments and
    Thanks for your comments and thats too bad that you are not allowed to joke around anymore! LOL... whats that old saying "laughter is the best medicine"....Well I know that I itch so its not my imagination and I'm hoping for the best. I see the thyroid doc on the 9th for the u/s results for the nodule he found and I will see if he has any wise words about the nodes he felt as they did a full neck u/s on me. My post-hodgkins anxiety had me running to my oncologist. I made an appt right away which is the 15th. Not so much a right away feeling when you have to wait! I know by now he has gotten my neck u/s report because I told them to send it to him, but no phone call so maybe no news is good news? Again I'm hoping. I was told too during treatments that it can come back. I'm just feeling anxious and panicky (sp?) and of course this just makes all the aches pains and itchiness worse! But want to thank you for writing me. It helps to talk to someone that is going through all this. My first bout of hodgkins I really didn't have anyone to talk to that "really" understood what we go through. I'm blessed I have a caring helpful family who really got me through the bumps in the road. But again its nice to be able to talk to others who are actually dealing or dealt with all this. I'm glad to hear you are in remission and done with those nasty treatments. I wish you the best of health each and everyday. Come back and talk if you want to... I know I'm going to need all the help I can get. I'm glad I found this place :)

    A GREAT PLACE
    Yes you did find a good place to be. Everyone on here will be able to put inpit into this. They have really helped me. When I was first diagnosed in May of this year I did not know anything about this site and there is nothing more lonely feeling than to have something like this and nobody really understands. I made the mistake that so many make by going straight to the websites.That was a nightmare. I did not realize how most of them are so outdated. I guess in a way its how I found this site to begin with. Oh,but what I went thru for a month before I happened to stumble on it. People itch all the time and get belly aches or headache, but never give it a second thought because it always passes. People that have had lymphoma get those same symtoms and right away our mind starts to flutter. Read some of the post and you will see what I am talking about. I don't blame them either, I would be thinking the same things. Its a human reaction. If those thoughts did not go thru their minds then I would have to wonder about them. Your reaction is perfectly normal and has to be checked out for anything and just for your piece of mind. What exactly was your diagnoses? Mine was Follicular NHL stage 4, but as you know staging is not as crucial in lymphoma as other types of cancers. It was 9 years ago you had this and they have come a long way in that time with treatments. John
  • Swtkoolaid
    Swtkoolaid Member Posts: 53
    #5
    COBRA666 said:

    A GREAT PLACE
    Yes you did find a good place to be. Everyone on here will be able to put inpit into this. They have really helped me. When I was first diagnosed in May of this year I did not know anything about this site and there is nothing more lonely feeling than to have something like this and nobody really understands. I made the mistake that so many make by going straight to the websites.That was a nightmare. I did not realize how most of them are so outdated. I guess in a way its how I found this site to begin with. Oh,but what I went thru for a month before I happened to stumble on it. People itch all the time and get belly aches or headache, but never give it a second thought because it always passes. People that have had lymphoma get those same symtoms and right away our mind starts to flutter. Read some of the post and you will see what I am talking about. I don't blame them either, I would be thinking the same things. Its a human reaction. If those thoughts did not go thru their minds then I would have to wonder about them. Your reaction is perfectly normal and has to be checked out for anything and just for your piece of mind. What exactly was your diagnoses? Mine was Follicular NHL stage 4, but as you know staging is not as crucial in lymphoma as other types of cancers. It was 9 years ago you had this and they have come a long way in that time with treatments. John

    I had Hodgkins Stage 4. I
    I had Hodgkins Stage 4. I think that it spread pretty fast or I had it for a while and didn't know. I first started with drenching sweats but never gave it any thought, then the itching that was so severe that I seen many doctors with no answers and scarred skin. I then had a sore neck and when I was rubbing it found a lump in my collar bone it was huge. I asked my sister to feel it and she said oh thats just a swollen gland. I thought it kinda strange since it was on my collar bone and really didn't know we had glands there. My other sister was going to school to be a nurses aid and I opened up one of her school books and looked up night sweats and itching and sure enough I stumbled across Hodgkins Disease. I just remember looking over at my sister and said I have this...I then was seen by an ENT and he said that the lump must be removed and asked me if I had heard of Hodgkins. I just laughed and said ya I know I have it. Everthing from that day forward went by so fast I didn't have time to panic. I don't even really remember being scared. Treatments went well with very few side affects. I went almost 9 months with a heavy dose of Chemo, not sure which one. I know I took pills that made me sick then they switched me over to an IV and my doc called it my tequila sunrise, he was a joker! I guess I'm kinda surprised that I'm really scared this time, when I don't ever remember being scared the first time. Maybe I was and just didn't have time to sit and think about it. Itsn't it funny how we tend to panic over some little itch. I've been doing it for 9 years.. this itch just seems a little odd and has lingered way too long :( And I understand the google thing. I've googled stuff before and sent myself into panic mode many times. I try not to do that anymore. I like these boards better. You get lots of info without a lot of the fear. I'm glad that even after 9 years medicine has evolved. Thats comforting to know. I'v never heard of Follicular NHL. If you would like to share I'd like to more about it. Again thanks for responding it really helps :)
  • Swtkoolaid
    Swtkoolaid Member Posts: 53
    #6
    Swtkoolaid said:

    I had Hodgkins Stage 4. I
    I had Hodgkins Stage 4. I think that it spread pretty fast or I had it for a while and didn't know. I first started with drenching sweats but never gave it any thought, then the itching that was so severe that I seen many doctors with no answers and scarred skin. I then had a sore neck and when I was rubbing it found a lump in my collar bone it was huge. I asked my sister to feel it and she said oh thats just a swollen gland. I thought it kinda strange since it was on my collar bone and really didn't know we had glands there. My other sister was going to school to be a nurses aid and I opened up one of her school books and looked up night sweats and itching and sure enough I stumbled across Hodgkins Disease. I just remember looking over at my sister and said I have this...I then was seen by an ENT and he said that the lump must be removed and asked me if I had heard of Hodgkins. I just laughed and said ya I know I have it. Everthing from that day forward went by so fast I didn't have time to panic. I don't even really remember being scared. Treatments went well with very few side affects. I went almost 9 months with a heavy dose of Chemo, not sure which one. I know I took pills that made me sick then they switched me over to an IV and my doc called it my tequila sunrise, he was a joker! I guess I'm kinda surprised that I'm really scared this time, when I don't ever remember being scared the first time. Maybe I was and just didn't have time to sit and think about it. Itsn't it funny how we tend to panic over some little itch. I've been doing it for 9 years.. this itch just seems a little odd and has lingered way too long :( And I understand the google thing. I've googled stuff before and sent myself into panic mode many times. I try not to do that anymore. I like these boards better. You get lots of info without a lot of the fear. I'm glad that even after 9 years medicine has evolved. Thats comforting to know. I'v never heard of Follicular NHL. If you would like to share I'd like to more about it. Again thanks for responding it really helps :)

    NOT CANCER RELATED
    I just wanted to say that I read your post "Another Idiot" LOL... just so you know its okay to get off subject. I'm like you, its good to give our minds a break from Cancer and treatment and fears and put our thoughts into other things. I know that some probably get mad, but I'm glad that you were trying to get to know people in other ways then just our ongoing battles. Anyway, I'm off subject so I better close for now :) Thanks again for your posts. Andrea
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #7
    Welcome
    Hi,
    I'm glad you found this group because the folks here are just wonderful. John was the first person to respond to my first posting as he is here for you today with yours.He's my buddy! Many others are here also for you. I just finished my 4th round of chemo yesterday(CVP-R) with 2 rounds left to finish. I was diagnosed in June with Follicular Non-Hodkins stage 3 grade 2 type A (indolent). The waiting for test results is absolutely the pits! I'm glad you will see the doctor on the 9th and 15th, but I know it seems like a long ways off. Just keep coming here to pass the time because there is always someone around to communicate with. If you feel like it maybe you can tell us a little more about you...1st name..where you live(State) etc. Totally up to you however what you feel comfortable sharing. I'm married to Steve(32)years and we live in Yakima Washington. I've been retired since 2002, but Steve still works. We are avid fishermen and enjoy going as often as possible. We have 2 grown sons age's 41 and 31. 2 grandchildren from our oldest son, Charley jr.(18) and Chelsie(20). Our youngest son and his wife are expecting their first child in May, so we are all excited for that! Hopefully my little bit of information sharing has taken your mind off of your worries. I will keep good positive thoughts that your test results come back ok. Take care...Sue (FNHL-2-3A-6/10)
  • Swtkoolaid
    Swtkoolaid Member Posts: 53
    #8
    allmost60 said:

    Welcome
    Hi,
    I'm glad you found this group because the folks here are just wonderful. John was the first person to respond to my first posting as he is here for you today with yours.He's my buddy! Many others are here also for you. I just finished my 4th round of chemo yesterday(CVP-R) with 2 rounds left to finish. I was diagnosed in June with Follicular Non-Hodkins stage 3 grade 2 type A (indolent). The waiting for test results is absolutely the pits! I'm glad you will see the doctor on the 9th and 15th, but I know it seems like a long ways off. Just keep coming here to pass the time because there is always someone around to communicate with. If you feel like it maybe you can tell us a little more about you...1st name..where you live(State) etc. Totally up to you however what you feel comfortable sharing. I'm married to Steve(32)years and we live in Yakima Washington. I've been retired since 2002, but Steve still works. We are avid fishermen and enjoy going as often as possible. We have 2 grown sons age's 41 and 31. 2 grandchildren from our oldest son, Charley jr.(18) and Chelsie(20). Our youngest son and his wife are expecting their first child in May, so we are all excited for that! Hopefully my little bit of information sharing has taken your mind off of your worries. I will keep good positive thoughts that your test results come back ok. Take care...Sue (FNHL-2-3A-6/10)

    Hi Sue... so nice to meet
    Hi Sue... so nice to meet you and let me say this I must be a little emotional as you brought tears to my eyes. But they are happy tears! John seems like a really nice person actually I've been reading many posts and you all seem like one big happy family - thats nice and I'm glad I can be a part of that. My name is Andrea and I live in Wyoming, I'm 43 will be 44 November 14th. I have one daughter and an 8 month old granddaughter who by the way is the light of my life. Yes I'm a proud granny :) She keeps me going even through these trying times. I was diagnosed with Hodgkins, not sure exactly what kind, but stage 4 about nine years ago. I've been doing really well up until a couple of months ago when everything went to poop! I'm hoping for the best outcome and trying to keep positive. I need to undersstand I have no control over the future, but I do have today and thats a blessing! I like to fish too, me and my boyfriend try to get out to the lakes as much as possible. But both of us work full-time so time is limited. I work for the State and have been at the same job for 26 years. I sometimes can't believe I've been here that long especially with my short attention span LOL... I'm glad to hear you are seeing the light at the end of the treatment tunnel... and I'm glad that you are doing well. I hate to see any of us like this, but I'm blessed to have found people like myself dealing with this. I've actually had health anxieties from the time I was diagnosed so its really no wonder that I'm a basket case right now. But like I told John just writing to this board and hearing from the two of you just for this short time has really helped. It feels good to finally tell someone after these last few months how scared I am. I try not to show that side to my family as I don't like to worry them so again its nice to be able to come here. I hope that I haven't rambled on too much... I'm glad you stopped by. I'll keep you in my thoughts and prayers ;) Andrea P.S. How do you post a profile picture? Its kinda nice to see who you are talking to :)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #9
    Swtkoolaid said:

    NOT CANCER RELATED
    I just wanted to say that I read your post "Another Idiot" LOL... just so you know its okay to get off subject. I'm like you, its good to give our minds a break from Cancer and treatment and fears and put our thoughts into other things. I know that some probably get mad, but I'm glad that you were trying to get to know people in other ways then just our ongoing battles. Anyway, I'm off subject so I better close for now :) Thanks again for your posts. Andrea

    Follicular lymphoma
    Andrea,
    I will give it shot at explaining it. First of all believe me you will be getting a lot of responses from this group. I know them well enough to know how caring they are. Follicullar is a slow growing lymphoma. It is determined what it is by a biopsy which is no fun as you know. They put the slide under the microscope and look at the cell shape and size. Every type has its own characteristic look. Mine are the small cell that form a spiral appearance. Some are mixed with spiral and larger type cells and that is called another type. Some are large cells alone and they too are called a different type of lymphoma. The type of cell tells them the kind of lymphoma we have. From their experience and all the trials they can usually tell what it will do in the future as far as returning and what type of treatment is needed to get it into remission now. Because it is so slow growing it is considered not cureable but totally treatable. If and when it comes back they have another treatment that will knock it back again. As time goes on and the progress they are making with lymphoma the treatments could and hopefully be heading to a cure. These are called indolent types. The other type is a mixed bunch of cells that are small and large and they have to be watched a little closer because they can become aggressive during and after treatment. The next type is the aggressive lymphoma cells that require immediate attention because they do move quickly. They treat it aggressively as well. After treatment with aggressive there usually is no maintenace required because the objective is to kill all the aggressive cells. With what I have, the indolent type it is not the cureable type but treatable type and a maintenace routine is required. Most get a new age antibody called rituxin for 2 years. Its pretty standard now, but they are using other methods as well. Hope I didn't mix you up to much. John (FOLLICULLAR NON HODGKINS LYMPHOMA-GRADE 1-STAGE 4-DIAGNOSED 5/10 2010) REMISSION
  • Swtkoolaid
    Swtkoolaid Member Posts: 53
    #10
    COBRA666 said:

    Follicular lymphoma
    Andrea,
    I will give it shot at explaining it. First of all believe me you will be getting a lot of responses from this group. I know them well enough to know how caring they are. Follicullar is a slow growing lymphoma. It is determined what it is by a biopsy which is no fun as you know. They put the slide under the microscope and look at the cell shape and size. Every type has its own characteristic look. Mine are the small cell that form a spiral appearance. Some are mixed with spiral and larger type cells and that is called another type. Some are large cells alone and they too are called a different type of lymphoma. The type of cell tells them the kind of lymphoma we have. From their experience and all the trials they can usually tell what it will do in the future as far as returning and what type of treatment is needed to get it into remission now. Because it is so slow growing it is considered not cureable but totally treatable. If and when it comes back they have another treatment that will knock it back again. As time goes on and the progress they are making with lymphoma the treatments could and hopefully be heading to a cure. These are called indolent types. The other type is a mixed bunch of cells that are small and large and they have to be watched a little closer because they can become aggressive during and after treatment. The next type is the aggressive lymphoma cells that require immediate attention because they do move quickly. They treat it aggressively as well. After treatment with aggressive there usually is no maintenace required because the objective is to kill all the aggressive cells. With what I have, the indolent type it is not the cureable type but treatable type and a maintenace routine is required. Most get a new age antibody called rituxin for 2 years. Its pretty standard now, but they are using other methods as well. Hope I didn't mix you up to much. John (FOLLICULLAR NON HODGKINS LYMPHOMA-GRADE 1-STAGE 4-DIAGNOSED 5/10 2010) REMISSION

    I kinda understand... I
    I kinda understand... I guess I've always been the Hodgkins for Dummy type person. I don't think anyone ever really explained to me what I had, we just treated and forgot about it. It would be nice if they found a cure for all our types. Looks like they are getting closer and at least they can keep some if not all at bay for a period of time. Its all so confusing though, actually, just typing is confusing for me right now. Anxiety sure can play mean games! I just met Sue and she seems really nice. I can tell already how caring all of you are just by all the quick responses. Please know how much I appreciate it. I will keep coming back as often as I can. I know I need this place now more then ever. Just wish I would of found it 9 years ago. I will keep you all updated with my results and stuff and I will definitely keep all of you in my thoughts and prayers! Thanks again for all your posts! Andrea
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #11
    Swtkoolaid said:

    Hi Sue... so nice to meet
    Hi Sue... so nice to meet you and let me say this I must be a little emotional as you brought tears to my eyes. But they are happy tears! John seems like a really nice person actually I've been reading many posts and you all seem like one big happy family - thats nice and I'm glad I can be a part of that. My name is Andrea and I live in Wyoming, I'm 43 will be 44 November 14th. I have one daughter and an 8 month old granddaughter who by the way is the light of my life. Yes I'm a proud granny :) She keeps me going even through these trying times. I was diagnosed with Hodgkins, not sure exactly what kind, but stage 4 about nine years ago. I've been doing really well up until a couple of months ago when everything went to poop! I'm hoping for the best outcome and trying to keep positive. I need to undersstand I have no control over the future, but I do have today and thats a blessing! I like to fish too, me and my boyfriend try to get out to the lakes as much as possible. But both of us work full-time so time is limited. I work for the State and have been at the same job for 26 years. I sometimes can't believe I've been here that long especially with my short attention span LOL... I'm glad to hear you are seeing the light at the end of the treatment tunnel... and I'm glad that you are doing well. I hate to see any of us like this, but I'm blessed to have found people like myself dealing with this. I've actually had health anxieties from the time I was diagnosed so its really no wonder that I'm a basket case right now. But like I told John just writing to this board and hearing from the two of you just for this short time has really helped. It feels good to finally tell someone after these last few months how scared I am. I try not to show that side to my family as I don't like to worry them so again its nice to be able to come here. I hope that I haven't rambled on too much... I'm glad you stopped by. I'll keep you in my thoughts and prayers ;) Andrea P.S. How do you post a profile picture? Its kinda nice to see who you are talking to :)

    Drs. Reports.
    Andrea,
    Before I forget, make sure you get the copies of your Drs. reports from them when you have test of any kind,even blood work. It is nice to be able to have those records on hand to refer too.Just ask and they will be glad to give them to you. John(FNHL-1-4A-5/10)REMISSION


    Oh yea,tell you a little secret, I knew it wouldn't take Sue long to get back to you. Shes my buddy too. Now don't tell her I said that!!! hahahaha.
  • Chris17
    Chris17 Member Posts: 175
    #12
    COBRA666 said:

    Drs. Reports.
    Andrea,
    Before I forget, make sure you get the copies of your Drs. reports from them when you have test of any kind,even blood work. It is nice to be able to have those records on hand to refer too.Just ask and they will be glad to give them to you. John(FNHL-1-4A-5/10)REMISSION


    Oh yea,tell you a little secret, I knew it wouldn't take Sue long to get back to you. Shes my buddy too. Now don't tell her I said that!!! hahahaha.

    Hi Andrea
    When i first started posting here a few weeks ago Sue and John and another person Vinny were the first people to respond to my post, i call them the cancer survivor network welcoming wagon, everyone here is very thoughtful and caring and have alot of info and insight,i can relate to what you said about the blur you went through from the dx to the treatments, i barely remember that part of it. I am from long island ny, mom of 5 all grown and grandma of 15, they are on the west coast but my oldest daughter and her 3 are in GA. It was hard not having them here when i was going through all the treatments but we kept in touch by phone and internet which isnt the same. i recently finished my maintenance therapy and im feeling a bit tired but ok. I wish i had known about this website in 2008 it would have helped a great deal, having these wonderful people here to discuss my fears my worries, it would have taken a big load of my mind, but i am here now and i enjoy reading the posts, i get up in the morning with my coffee and come here first thing, well enough of my rambling, you have come to the right place, take care and good luck will keep positive thoughts your way and again welcome!
    Chris (FNHL/stage3/04-08)in remission
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #13
    COBRA666 said:

    Don't worry you won't hear any jokes from me. I used to joke and talk a little trash, but not anymore. It cut my posts way down since I got called on it. You asked if it could be your imagination. Ever notice when you see bugs how it makes you feel itchy? Knowing the symtoms that lymphoma exhibits could very well be what you are experiencing,but I would not take that as sound advice. You may actually be having the itching because the symtom is really there and causing you to feel itchy. You really need to have it checked out. This stuff does have the tendency to come back. I am just out of treatment and in remission, but know they say it can come back with the indolent type. Its not always the case but it can show its ugly face again.I know you are scared but you have to have it checked to put it back under control if it has returned. John (FNHL-1-4A-5/10)

    Andrea,
    I knew it would not take long to start getting responses. A lot of people here do not get on here everyday because they have full-time jobs and other responsibilities, but they will be here. Quite a few of them have gone into remission since I found this site and tried to go back to the everyday hustle and bustle of everyday life. Most do stay with us by reading the progress of others. I am retired and have a little more time on my hands. I try to be here daily,2-3 times and sometimes more. Just about everyone on here has been thru the mill with this monster and we know how you feel. Just stick with us. John (FNHL-1-4A-5/10)
  • Swtkoolaid
    Swtkoolaid Member Posts: 53
    #14
    COBRA666 said:

    Andrea,
    I knew it would not take long to start getting responses. A lot of people here do not get on here everyday because they have full-time jobs and other responsibilities, but they will be here. Quite a few of them have gone into remission since I found this site and tried to go back to the everyday hustle and bustle of everyday life. Most do stay with us by reading the progress of others. I am retired and have a little more time on my hands. I try to be here daily,2-3 times and sometimes more. Just about everyone on here has been thru the mill with this monster and we know how you feel. Just stick with us. John (FNHL-1-4A-5/10)

    Good Morning..... You are
    Good Morning..... You are right John I believe I have found a group of very caring people and thats comforting. I plan on stickng around and will be asking the docs from here on out for my medical reports. I have never really even gave it a second thought but I think it is important to get them and have them handy. Thanks for the advise. I'll be back later on to read and respond not just to my boards but others. I really think I have found a home here...LOL Have a great day John and again thank you so much for being here for me! :)
  • Swtkoolaid
    Swtkoolaid Member Posts: 53
    #15
    Chris17 said:

    Hi Andrea
    When i first started posting here a few weeks ago Sue and John and another person Vinny were the first people to respond to my post, i call them the cancer survivor network welcoming wagon, everyone here is very thoughtful and caring and have alot of info and insight,i can relate to what you said about the blur you went through from the dx to the treatments, i barely remember that part of it. I am from long island ny, mom of 5 all grown and grandma of 15, they are on the west coast but my oldest daughter and her 3 are in GA. It was hard not having them here when i was going through all the treatments but we kept in touch by phone and internet which isnt the same. i recently finished my maintenance therapy and im feeling a bit tired but ok. I wish i had known about this website in 2008 it would have helped a great deal, having these wonderful people here to discuss my fears my worries, it would have taken a big load of my mind, but i am here now and i enjoy reading the posts, i get up in the morning with my coffee and come here first thing, well enough of my rambling, you have come to the right place, take care and good luck will keep positive thoughts your way and again welcome!
    Chris (FNHL/stage3/04-08)in remission

    Hi Chris.... thanks for
    Hi Chris.... thanks for responding all of you are so very nice for responding to my post. I wasn't sure if anyone would but I'm glad that I found a board that actually has people that care and understand what we are all going through. WOW 15 grandchildren - what a blessing and a handful. I have one and she is just precious. I'm so glad to hear you are in remission and have finished your maintenance therapy that is such GOOD NEWS! I hope that I'm still in remission but I'm sure I will be getting a lot of tests again here in the near future. The waiting like Sue said is the worst! But I wanted to come and say HI and to thank you for being here and responding to my posts. I really do appreciate all of you! I'm off to work so I will check in later and will be sure to keep all of you updated. Please keep in touch too and let me know how you are doing. Take Care and sending you healthy happy thoughts! ;) Andrea
  • Swtkoolaid
    Swtkoolaid Member Posts: 53
    #16
    Swtkoolaid said:

    Hi Sue... so nice to meet
    Hi Sue... so nice to meet you and let me say this I must be a little emotional as you brought tears to my eyes. But they are happy tears! John seems like a really nice person actually I've been reading many posts and you all seem like one big happy family - thats nice and I'm glad I can be a part of that. My name is Andrea and I live in Wyoming, I'm 43 will be 44 November 14th. I have one daughter and an 8 month old granddaughter who by the way is the light of my life. Yes I'm a proud granny :) She keeps me going even through these trying times. I was diagnosed with Hodgkins, not sure exactly what kind, but stage 4 about nine years ago. I've been doing really well up until a couple of months ago when everything went to poop! I'm hoping for the best outcome and trying to keep positive. I need to undersstand I have no control over the future, but I do have today and thats a blessing! I like to fish too, me and my boyfriend try to get out to the lakes as much as possible. But both of us work full-time so time is limited. I work for the State and have been at the same job for 26 years. I sometimes can't believe I've been here that long especially with my short attention span LOL... I'm glad to hear you are seeing the light at the end of the treatment tunnel... and I'm glad that you are doing well. I hate to see any of us like this, but I'm blessed to have found people like myself dealing with this. I've actually had health anxieties from the time I was diagnosed so its really no wonder that I'm a basket case right now. But like I told John just writing to this board and hearing from the two of you just for this short time has really helped. It feels good to finally tell someone after these last few months how scared I am. I try not to show that side to my family as I don't like to worry them so again its nice to be able to come here. I hope that I haven't rambled on too much... I'm glad you stopped by. I'll keep you in my thoughts and prayers ;) Andrea P.S. How do you post a profile picture? Its kinda nice to see who you are talking to :)

    Hey Sue
    I just noticed that during my anxiety brain fog that I didn't even ask how your treatment went. I hope you are doing okay and feeling well. I remember the treatments, something you will never forget. I was fortunate that I didn't have a lot of side affects, but no matter what we all feel like poop afterwards. So I just wanted to check in and see how things are going. Wishing you well and lots of hugs! :)
  • forme
    forme Member Posts: 1,161 Member
    #17
    Welcome
    Hi Andrea,
    I just wanted to add my welcome to the board. You have met a few of the greatest people you will ever come across. Everyone is wonderful and has advice or caring words to share. I feel like I have another family, one that understands and always has an available ear and open heart.
    Peaceful healing
    Lisha
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #18
    Swtkoolaid said:

    Hey Sue
    I just noticed that during my anxiety brain fog that I didn't even ask how your treatment went. I hope you are doing okay and feeling well. I remember the treatments, something you will never forget. I was fortunate that I didn't have a lot of side affects, but no matter what we all feel like poop afterwards. So I just wanted to check in and see how things are going. Wishing you well and lots of hugs! :)

    Pretty good...
    Hi Andrea,
    This is the week I have to take the 60mg of prednisone each morning, so it's not my "best" week. Me and the pred are not friends, so I'll just leave it at that. The less I talk about it the better, and I'm sure others in the group are fed up with my carrying ons about it...(did it for the last 3 treatments). You asked how to post a picture here...well...I'm going to pass that off to someone else in the group that isn't on the pred this week. By the time I got done explaining it to you, you would be all messed up for sure...no kidding! You have a good day at work. I'll be really good by Sunday morning...just knowing I won't be swallowing the nasty pred pills when I get up!..ha!
    Love...Sue (FNHL-2-3A-6/10)
    Follicular Non-Hodgkins Lymphoma- grade 2- stage 3- type A- DX in June 2010.
    P.S. Some of us post our type of cancer at the end to help others remember. Chemo brain and so many different types can get confusing. It's totally voluntary, so don't feel pressured. I was just letting you know what all of this ment. :0)
  • Swtkoolaid
    Swtkoolaid Member Posts: 53
    #19
    forme said:

    Welcome
    Hi Andrea,
    I just wanted to add my welcome to the board. You have met a few of the greatest people you will ever come across. Everyone is wonderful and has advice or caring words to share. I feel like I have another family, one that understands and always has an available ear and open heart.
    Peaceful healing
    Lisha

    Thank You
    Hi Lisha,

    Thanks for the warm welcome & its so nice to meet you! Yes everyone seems so nice and full of knowlege and hope. I'm so glad I found this place. I'm hoping I have found another family as well. I know right now I need all the support I can get. I hope you come back often and I'm glad that I have found another friend on here. Thanks so much! Lots of Hugs & Please keep in touch Andrea :)
  • britta
    britta Member Posts: 107
    #20
    COBRA666 said:

    A GREAT PLACE
    Yes you did find a good place to be. Everyone on here will be able to put inpit into this. They have really helped me. When I was first diagnosed in May of this year I did not know anything about this site and there is nothing more lonely feeling than to have something like this and nobody really understands. I made the mistake that so many make by going straight to the websites.That was a nightmare. I did not realize how most of them are so outdated. I guess in a way its how I found this site to begin with. Oh,but what I went thru for a month before I happened to stumble on it. People itch all the time and get belly aches or headache, but never give it a second thought because it always passes. People that have had lymphoma get those same symtoms and right away our mind starts to flutter. Read some of the post and you will see what I am talking about. I don't blame them either, I would be thinking the same things. Its a human reaction. If those thoughts did not go thru their minds then I would have to wonder about them. Your reaction is perfectly normal and has to be checked out for anything and just for your piece of mind. What exactly was your diagnoses? Mine was Follicular NHL stage 4, but as you know staging is not as crucial in lymphoma as other types of cancers. It was 9 years ago you had this and they have come a long way in that time with treatments. John
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #21
    britta said:


    ??????????????
    Britta,
    Let me guess. You either fell asleep before you could type anything or pressed delete instead of send,right? I don't know how many times I have pressed delete instead myself. John (FNHL-1-4A-5/10)

Discussion Boards