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Has anyone had any reoccurence - I'm scared!

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

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.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

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's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

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's picture
COBRA666
Posts: 2413
Joined: May 2010

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's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

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's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

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

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

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's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

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

britta
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COBRA666's picture
COBRA666
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Joined: May 2010

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)

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

I do the same thing always sending something without attachments. Do it at work all the time and a lot more recently with my anxiety brain fog! I'm sure she will come by and repost.

dixiegirl's picture
dixiegirl
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Joined: Apr 2006

I can't even tell you how much I forget to attach a file or link......happens ALL the time lol

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

Thanks for coming by....Glad I didn't leave this comment blank! LOL ;)

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

Thanks for coming by....Glad I didn't leave this comment blank! LOL ;)

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

Thanks for coming by :) I hope you come back and repost. Looking forward to hearing from you :) Andrea

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

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's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

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! :)

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allmost60
Posts: 3184
Joined: Jul 2010

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's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

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's picture
COBRA666
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Joined: May 2010

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's picture
Chris17
Posts: 175
Joined: Oct 2010

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

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

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's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

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! :)

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

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's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

GM Sue,

I remember those nasty pills, they made me so sick that they finally took me off of them and I went with a different cocktail IV... I did so much better. They made me horribly sick, couldn't sleep, couldn't eat, I was a mess. So I'm sending lots of prayers and healthy thoughts your way that you will feel better soon. No worries about the picture thing you just get better! I've decided instead of waiting for all my doctor appts to call my ENT and have him take a look - he diagnosed me the first time around and I'm very comfortable with him. He will have an answer for me before any of my other appts come around. Guess I should of went to him in the first place, but I'm a big chicken and guess don't want to hear any bad news...but I know if it has returned I must get it under control early on. So with that I wish you a great weekend and thanks for coming by, your wonderful for doing so even when you don't feel well... ;) Hugs Andrea

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Andrea,
Thats the way to do it. Don't wait for them to make time for you. You are the one waiting to find out what is going on,not them. Its awful to say but we are just numbers to them. First thing you hear when you walk in the office is "Who's your insurance carrier." They sometimes do not even ask why you are there. You are asked to give them your insurance cards and have a seat. While you are sitting there worrying they are busy checking those insurance carrier policies and what they cover. It is probably not appropriate to be talking like that, but none the less its the truth. Since we have to go thru all that crap we may as well get the earliest appointment as possible. I could go on all day about stuff like that, but its getting off the subject. Just get that appointment as soon as you can and hopefully you can stop worrying. Its hard to do I know. I been thru the same thing just like most on here. You get all hyped up and lo and behold you get a phone call cancelling your appt. or postponing a much needed test. After awhile you start to feel like a ping pong ball. I am sure people on here can relate to what I am saying. Just hang in there and stick to your guns and get an appt. as soon as possible. John(FNHL-1-4A-5/10)

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

Its horrible that we are just considered a number, everyone deserves more then that. Not just us, but anyone that feels bad or is sick. It is frustrating. I also hate when they say no news is good news, well no news still makes us worry regardless LOL! I thought I'd be able to get in earlier to the ENT, but he is out this week and next Friday is the earliest (he works in Colorado & here in Wyoming) so I know he is pretty busy, but I will have already have seen the Thyroid Doc. But I will see him anyway just to double check any test results. Like I had said in my other email I trust him and I'm thinking its because he is old school, hippie from the 60's and always wears his bandana and Hawian shirt, he is too funny, the best bed side manners and he is always cracking jokes! He doesn't fit the "typical" doctor style. He cuses like a sailor and doesn't care what anyone thinks, but he has a heart of gold! He is definitely one of a kind. He removed my lump the first go round and kept in touch with me until I started my chemo...he was my life saver! I wish all doctors could be like him. Also, his staff is just as nice - I'm sure its one of his requirements when hiring. No grouchy, I need your insurance type people. They are always very pleasant and caring. :) Kinda like all the people on here! Thanks John for coming by and don't ever think you are getting off subject. I appreciate all comments. I like football too.... My favorite team the Raiders! Guess it is because I was born in Oakland, Cali....but I have a soft spot for the MN Viks! :) Have a great day John and I hope all is well. Andrea(Hodgkins Stage4 diagnosed 2001~remission I hope)

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Yes it is great when we can find a Doc on our level. I mean they are all on our level but some think they are 5 steps above us. They are usually the ones with the bed side manner of a goat. I have discussed this before on the site. I am glad you have one that you can really trust and not have to feel like a number. I have one sorta like in between, He's a nice guy and all,but I still feel like a number. Never gotten a call from him. I have gotten calls from the staff to reschedule an appt. though. All in all he's ok because I could have done a lot worse. Like I was saying I went into that before about some real "Better than Thou" Drs. when my father was sick quite a few years ago. I really learn more just being here and talking to the people. They are all full of knowledge with their experiences. Be surprised at what you learn with what they share about their experiences with their treatments. Even though we are all different we get to know what to expect from treatments. Keeps us on our toes. Feel free to say what is on your mind, thats what its all about here. I went over a month before I found this site and I was a mess until then. The people here seem to have a way to make you feel relaxed. A lot of them have gone on to returning to the working life and others things that they put on hold before diagnoses. Some have stuck around to help others. Some do both. Either way is ok.Try not to worry too much and keep in mind this is no death sentence by any means. Maybe a few years ago when it was known as Hodgkins Disease it was because they did not really know what it was or how to treat it. Now they know and have made some great strides in treatment. Hopefully a cure in the near future. John(FNHL-1-4A-5/10)

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

Ya my Thyroid Doctor is a bit strange....he actually raised a red flag when I saw him for my thyroid. I mentioned that I was having anxiety attacks and he right away said have you sought psyciatric counseling? Huh? I had been on other health boards for Thyroid disorders and a lot of people told me if that comes out of your doctors mouth, to run and run fast. I was pretty disappointed and he made me feel crazy. Then said you have a nodule on your thyroid and swollen glands and need a neck u/s....I said should I be concerned and he said "I don't know"...he just felt cold and unconcerned about my feelings. Needless to say once I see him next week for my results and if he doesn't have a better attitude he is FIRED! LOL... I guess that is one power some of us have over our very educated medical professionals. I'm fortunate that I have the ability (pretty good insurance) that I can doctor shop. I feel for those who are limited and have to put up with some of these so called medical experts! I have to say though I've been feeling better coming here and reading everyone's posts. I feel "normal" here. I sometimes feel alone and strange around family and friends. I know they love and care about me, but I still think they just really don't get it. I don't blame them how could they know. Its nice to be able to come here and vent or talk or just hang out..... Thank you for the reassurance that this is not a death sentence ~ I'm sure you know how the anxiety mind works, it tends to wonder to places it does not need to be. This place pulls me back to reality. I suffer from GAD and need positive caring people around me! The reassurance and to know I'm not going crazy. Thanks again and if I don't come back tonight... have a blessed weekend! Andrea

forme's picture
forme
Posts: 1162
Joined: Aug 2010

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

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

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 :)

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

Good luck on your Onc. visit, it is good that you notice things, the worst thing you can do is ignore your symptoms. This is my second bout with cancer, first with head and neck, second with NHL, I joke with my wife that I feel like I belong to the Cancer of the Month Club. Keep positive!!!!!! Vinny

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Vinny,
I see your hair is growing back. Mine is just starting. John

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Vinny...you make a darling couple...love the picture!...Sue

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

hahahaha that pic is from last year John!!!!!

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Vinny,
WHEW!!! I was gonna say, man I got ripped off. All I have is some fuzzies up there. HAHAHAHAHA. Mine is starting to grow, but it is really fine with a few darkies in there. I Guess it gives us something to watch for after all we have been thru,right? Hope you are feeling better everyday. John (FNHL-1-4A-5/10)

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

LOL.... :)

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

Thanks for stopping in....and thanks for the laugh. I'm sorry to hear that you had double bouts but in the same note you seem like you are doing well. I love the pic too....I'm too much of a chicken to ignore any symptoms. I too am a member of a club. Its called health anxiety of the month club :) Keep in touch friend ~ Andrea

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I am so glad you found this site. I think it should be a pre-requisite for all doctors to send their patients here, from the very beginning especially while waiting for test results. I think the torture of waiting for results is worse than the treatments. I do think waiting is nothing but emotional torture!

The people here are terrific. It's a great place to share your anger, depression, fear, helplessness and the best is HAPPINESS and HUMOR.

Without a good laugh sometimes the negative takes over and we seem to run with it. We all would do better to pick up the laughs and run with them with huge smiles all over our faces....wouldn't that make our families think we're nuts LOL.

Take care honey,

Beth

LPL/MALT/FNHL stage 3 (4/7/2006)

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

I agree it should be a pre-requisite ~ I've already felt the benefits and I see that so many others have too. I'm so not looking forward to my upcoming appts but I know I have to do it...not knowing would be so much worse. But I have to keep a positve attitude and keep my sense of humor right? So I will run to my appts with a big smile on my face :) With or without a smile my family thinks I'm nuts. They shook the family tree and guess who fell out me...;) Take Care Beth and again thank you so much for coming by and putting that smile on my face!

Hugs ~ Andrea

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Andrea,
I told you that these are the greatest bunch of people you'd ever want to meet. We have all been thru or are going thru exactly what you are going thru. You will never be alone as long as you stick with us. Believe me, we all know that scared and lonely feeling all to well. You will learn more on here than any of those outdated websites.I know I did. I can't speak for the others as far as that goes when it comes to those websites,just for myself. Some have really had it rough with treatments and some not as bad, but it all sucks. Oh, this is the only club I belong too. Just wanted to tell you how I got this cobra666 name. It sounds sorta morbid doesn't it? Well I have a Shelby Cobra sportscar that my oldest son and I built. Its a 1966 model. So I used the cobra 66 to start with. One day it would not let me on the site unless I changed my name. I just added another 6 and it let me on and when I looked at it I thought HMMMM!!!, I don't care for that, but it would not let me change it. John (FNHL-1-4A-5/10)

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

That is strange that it accepted the other 6...LOL oh well I've seen worse screen names. LOL... I decided on mine before I got Hodgkins I drank a lot of koolaid and it was sweet...swtkoolaid. I now only drink sweet organic fruit juice but I think that name would be way too long...LOL I already love all the people on here and I feel safe and happy here. I'm glad I found all of you! Its helped to get through these days of waiting. BTW I or we own a 1970 Ford Mustang Fastback...super sweet car. I love car shows and we try to take it out every now and then to show it off :) I hope you had a great weekend and hey I understand the whole fuzzy head thing and sitting back waitng for the growth - At least us women have wigs we can play with while we wait :)

truckingalong
Posts: 444
Joined: Aug 2010

Hi, I welcome you here and enjoyed reading your posts. I know how that is about waiting to see the results what you may or may not have. So it is nice to reach out here and it does help me a lot too. I just completed 3rd round (6th treatment of chemo) and still have 3 more rounds. Feel like I am running a long marathon but people tells me that it will be over before I know it. Hope so!! I have lost my hair and most of my eyebrows (fine with me, no waxing needed!) but do enjoy wearing different fashionable scarves.

Wish you best of luck with everything,
Liz
(HL4B - 8/2010)

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

Thanks for the warm welcome and right now I need it... its blowing and snowing here :) I know the whole marathon feeling, but they are right it will be over before you know it. I lost my hair too, but I had so much that it took a long time before I decided it was time to "cover up".... I really never lost all my hair, but it was definitely a mess to say the least. But oh well, a small price to pay for life right? I think my daughter was concerned more about my hair then I was - funny how people react in different ways. And yes the waiting for results is a nightmare. But I did get some good news today about my thyroid that we thought may be cancerous, but it turned out that it wasn't so I will take that and run. I have to see the onco next Monday and I'm not looking forward to that visit at all, but know I have to go and make sure that everything is okay and if it is not, then to get things under control. But I'm glad to hear you are on your way to recovery...hang in there and thanks for coming by. Andrea

truckingalong
Posts: 444
Joined: Aug 2010

Thanks, Andrea, for the good wishes!! I really am glad to hear of your good news about your thyroid. Yeah, my children are warriors for me - they instill fire in me and so are good to me so I am blessed.

Take care and thanks for sharing,

Liz

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

Yes I have one daughter and a grandbaby and they are my world too. My boyfriend is wonderful too...he was not there with my first bout with Hodgkins, so he is quite concerned about what is going on and of course confused, but he is a trooper and my rock. Its good to have family and a spirtual connection to whatever it is we believe in without it I'm sure we would all be lost..... I think that our virtual family too is very important and I'm glad you came by... keep in touch and let me know how things are going. Many pryaers and hugs, Take Care my friend ~ Andrea

ktjc129
Posts: 6
Joined: Nov 2010

I was diagnosed with lymphoma 3 years ago, never been in remission. I have been having back pain for the past two years, thought it was from a herniated disc, low and behold the results from an MRI discovered a mass between two of my vertebrate. I can empathize about scary feelings! Besides that, my oncologist is on vacation, so I don't no what's going on?

yesyes2
Posts: 592
Joined: Jul 2009

Hi Ktjc129,

I'm sorry that you have been dealing with NHL for the past 3 years now. I also was diag. with NHL in December of 2007. After treatment with Rituxan I was in remission until July 2009 when a CT scan showed recurrance. Like you my oncologist was on vacation. What a stressful time that was for me. His partner kept saying that it wasn't an emergency and there was time to wait until my onc came back into town. I wasn't satisfied with that, so he emailed my doctor who said to start the re staging with a PET scan and to schd a biopsy and second oppinion wuth a major cnacer center and go from there. I had 6 cycles of RCHOP and currently am in remission. I would push my doctors office to get someone to follow up with you to see if this mass is lymphoma. The sooner you know what's what the sooner those scary feelings can go be eased.
Blessiings to you,
Leslie

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

The day I had my MRI for low back pain and numbness in my butt, was the day my hell began. I was hospitalized a few hours following the radiologists reading of this MRI. In my case, the mass grew super fast and my symptoms in creased in only one day to the point where I had much difficulty walking. My tumor was too complex for surgery. Please seek emergency care if you begin to suffer from any symptoms that may be caused by spinal cord compression. I am in remission from my DLBC but still suffer from what are irreversible issues with ambulation, pain and numbness. My doctor's informed me that symptoms of spinal compression is a medical/surgical emergency, please don't let them go. Let us know how it goes. Best of Luck, Kellie

ktjc129
Posts: 6
Joined: Nov 2010

Who would have thought that having a routine MRI for a herniated disc and back pain could result in an unexplained mass? I was totally shocked to find out this happened to me. The positive side of this equation is that supposedly having radiation and/or chemotherapy will take away the pain. Anyone have any comments to that? Also, how many of you have been eligible for disability? I would like to talk about that. I will keep you updated. Thanks for your concern.

Swtkoolaid's picture
Swtkoolaid
Posts: 53
Joined: Nov 2010

Sorry to hear you are still dealing with lymphoma and the results of the MRI. Scary doesn't even say enough does it? I'm still waiting for my results. I'm sure the Onco doc has them by now. I'm hoping he is not holding off telling me bad news before the holidays..that would bite! I'd much rather know. I thought about calling them, but I can't bring myself to well, chasing down my own fate ;( I'm sure if there was something seriously wrong they wouldn't care that the holidays are coming up - would they? Ugh! I hope that you can get in to see your oncologist as soon as possible so you will know what you are dealing with and I pray that its nothing serious and that you will go into remission from lymphoma... my thoughts and prayers and thank you so much for stopping by. Andrea

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