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Upcoming Scan and the nerves are starting to get to me

coachmike
Posts: 137
Joined: Oct 2011

Hey Everybody

 

Friday I will be having my one year scan since the Auto Stem Cell transplant for Diffuse Large B Cell Lyphoma. I am getting the normal jitters and fears that seem to overtake you both mentally and physically at times. To make things worse, I woke up Sat with a pretty bad sinus infection and a fever from it. Of course I start to think things like "what if this is infection isnt an infection and is really lymphoma"? I went to get antibiotics today at a patient first as my primary doctor was out of town. She did a normal exam and said she thought she might have felt an enlarged node but its minimal and in my throat area where the drainage from the infection is. I hear her say this but a voice in my head doesnt seem to listen to the logic. Of course I jump to the conclusion that its cancer back again. Just really feeling scared and overwhelmed today. You guys have always been such a strong support system for me, and right now I could really use some of that

 

Mike

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

Consider yourself supported! Laughing Most likely it's related to the sinus issues. Try not to worry too much (so easy to say until my scan comes around or I get whatever is going around).  Hang in there and let us know how things go.  Nearly a year since the SCT- wow!

Were here for you and big hugs,

Jim

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1025
Joined: May 2012

Coach,

I had been in total remission about a year, and felt a discomfort in my throat. I felt the area myself, and thought it was a "lump." I remember thinking at the time "this is what death feels like."  I had my doc check it, and he said it was normal muscle mass -- not a node at all.

I go for my once-every-six-month blood draw this Friday, and then results a week later.  It gets easier over time, but it never gets "easy."  I am 4 years in CR, and it still causes fear. I do not get CTs anymore.  My BP usually shows about 200/100 when I check in for my results.... I did have a scare with anemia last year, but a colonoscopy and all other checks were normal.

Your fears are absolutely to be expected. The fears do back off a bit over time, over the years....

Bless your results,

max

illead's picture
illead
Posts: 489
Joined: Aug 2012

The worry I mean.  I was elated and on with life after Bill's  "no evidence of lymphoma" ct scan and the oncs glowing support and happiness, for about a week, then the worry starts again.  Why is that?  I hate cancer!!!!! Yell I know we will all be thinking about you and know you will be fine.  Try to relax as much as possible, easier said than done huh?  Many congrats on your year, that is wonderful.  Hang in there and please let us know.  Becky

allmost60's picture
allmost60
Posts: 3155
Joined: Jul 2010

Hi Mike,

 I think we will always have anxious feelings when we feel sick, or when it's scan time. I went to the E.R this morning because my right ankle swelled up last night and upon waking this morning I could barely walk on it. Horrible thoughts were running through my head, but after 3 hours with doctors they said I have Gout. I was soooo relieved. Weird how we are perfectly fine with having any condition, as long as it's not cancer related. I'll keep you in my prayers for good scan results and that you only have a sinus infection. Take care....Sue

(Follicular NHL-stg3-grd2-typA-Dx 6/10-age 62) In remission.

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

Not gout too??!! Bless your heart, I've heard that is very painful.

(((Hugs)))

Rocquie

allmost60's picture
allmost60
Posts: 3155
Joined: Jul 2010

Hi Rocquie,

  Yes...Gout is very painful! For the last few months my hands have been hurting right at the knuckles and each middle finger. They would get red and swollen making it very hard to do anything with my hands. I just assumed it was probably a form of arthritis. Sunday evening when my ankle got so swollen and red, it really freaked me out because I hadn't done any kind of activity to warrant something like this happening. I was shocked Monday morning when the E.R doctor told me it was Gout. I'm taking a strong anti inflamation drug...(Indomethacin 50mg 3 times a day) and just having taken 2 doses has already reduced the swelling and pain. I see my Oncologist on Monday and get blood work done, so I'm going to have him check my uric acid level while checking the rest of my blood. Man...if it's not one thing it's another! Tongue Out At least today now I can stand and walk on my foot without hobbling or holding on to furniture. What baffles me is how one day you can be just fine and in 24 hours have something like this pop up. Freaky and scary to say the least! I'll keep you all posted on how things go. The medicine has taken away the pain in my hands, so that is a 'HUGE" relief! Much love to all...Sue

(Follicular NHL-stg3-grd2-typA-Dx 6/10-age 62) In remission

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

I'm glad the medication is helping and sorry you have to deal with this, Sue.  

DANG IT !

Big hugs - Jim

girliefighter's picture
girliefighter
Posts: 202
Joined: Mar 2013

Sue,

I hope by now you are relieved of this pain and swelling...geesh

Carie

coachmike
Posts: 137
Joined: Oct 2011

you guys are such a blessing. On another positive note all my labs looked great. My White Blood Cells were not elevated at all and were in the normal range. Am I correct that normally a signal of reoccurance is a boost in WBCs?

 

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Mike,

Just wanted to let you know that we're all here for you!!! I don't think the worrying will ever go away, just wish there was something we could all do and not think about it anymore :/ 

Sending you lots of positive energy and please as soon as you know the results let us know.

Don't forget to breath ok ")   (((( Hugs))))

Sincerely,

Liz

Shoopy
Posts: 210
Joined: Jul 2013

Mike,

I think we all wrestle with self-diagnoses.  Your labs were great...stick to that.  I'm sure everything will be fine.  Keep the faith my friend!

Karl

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

Coach, scans are a nerve-racking business! And there is nothing pleasant about them, from drinking that nasty liquid, going into that machine, being told by the machine to hold your breath (the last scanner I was in had an English accent, sounded very proper and polite and almost made my laugh) to the w.a.i.t.i.n.g. for the results. And to be sick already can't help. I won't tell you to not worry but I will tell you I'll be thinking about you on Friday and praying for positive results.

(((Hugs)))

Rocquie

 

illead's picture
illead
Posts: 489
Joined: Aug 2012

It doesn't seem to stop for you.  You have really been through it.  You are hanging in there but I know it cannot be easy.  You put on your supportive face when you post and I know you probably aren't up to it at times.  Please know you are truly appreciated.  Thank you for always being there, Becky

coachmike
Posts: 137
Joined: Oct 2011

So since monday i have been OCD about finding this swollen node in my neck this Patient First doctor said she felt. I have been checking nodes in my neck arm pits and groin roughly 20 times a day, totally not kidding. It made this scary situation so much worse. Well I decided I couldnt keep doing this so I literally walked right into my Oncology clinic this morning and basically said, I need to see my doctor...NO i didnt have an appointement LOL. He took me to his exam room and I explained the whole situation and gave me a look over and exam. Results...no signs of enlarged nodes. He told me that the enlarge lymphnode the previous doctor was referring to was actually my salivary gland!!! So I definitely left feeling a little better, just trying to stay positive about the scan friday and hoping of course for good news on Tue. Thanks to you all that have given so much support and love.

Mike

allmost60's picture
allmost60
Posts: 3155
Joined: Jul 2010

Hi Mike,

 Sometimes we just have to take the bull by it's horns and go for it. Glad you asserted yourself and demanded to be seen by your Onc. I always feel better once I make a decision and follow through. I wish I could help keep you calm until the scan on Friday and then the waiting for results on Tuesday, but as we all know...anxiety at scan time is part and parcel with our cancer journey. Sucks forsure! Hope you find comfort knowing your friends here are praying for you and totally understand how your feeling. Hang in there and let us know the results.

Best wishes...Sue

(FNHL-stg3-grd2-typA-Dx 6/10-age 62) In remission

Shoopy
Posts: 210
Joined: Jul 2013

Gutsy move, Mike!  I love it!  And so happy that things are moving in the right direction! Karl

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

Good luck today, Mike!  I know you won't get the results 'til Tuesday but wanted you to know you were being thought of today :).

coachmike
Posts: 137
Joined: Oct 2011

thanks jim, just got home from the clinic...scans done, now we wait

 

vexed
Posts: 10
Joined: Aug 2011

Hi Mike,

    Good luck on your scans. We have all been there. Most of the time it's no problem, but the waiting can get to you.

     You have found the subject that drives me crazy.  I'm feeling OK (which is rare!) and suddenly there is a symptom of this or a symptom of that.  Is the symptom real? Does it represent a major new problem? Is it a sign my condition is deteriorating? Should I make an urgent appointment with the doctor?  Should I even wait that long or should I go to the emergency room?

     I have a rare lymphoma and a heart problem, so a symptom can come on really fast and require an immediate decision.  And some of my symptoms can involve sudden bleeding, which is as scary as it gets. And almost all the symptoms lead nowhere.  In the last year, I have spent 2 separate nights lying on a bed in the emergency room waiting for treatment (8 to 12 hours) and both times it was nothing important. Also in the last year I have been at the doctors' office three times waiting for for tests to come back on an urgent care visit.  Again it was nothing. 

     It's not so easy to call it hypochondria when you are actually looking at a lump that should not be there or when you are applying direct pressure to a bleed.  Each of us has our own symptoms to figure out and our own fears to live with.

                                                                     Les  

    

 

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

Coach, I am thinking about you today. I wonder if you are sitting alone, all radioactive, in a room. Are you drinking that delicious contrast liquid? Maybe it will be over soon and you can enjoy a big breakfast.

My prayers for you and good scan results. Let us know, OK?

Big (((Hugs)))

Rocquie

 

girliefighter's picture
girliefighter
Posts: 202
Joined: Mar 2013

Coach,

Just wondering if you have any updates yet? I know you are wayyyyyyyyyyyyy more anxious than all of us to hear, but we all seem to be in this together. I absolutely Love that you walked right into that clinic and demanded to be seen, that is something I doubt I could do. The fact that you were diligently checking those lymphnodes kinda cracks me up, because in fact that would be something I would do...and probably induce swelling of them all by checking them so much..lol..I can chuckle about it now that you have been told it was nothing to be concerned about, but we all know at the time it was no laughing matter. I will continue to check in for results

Carie

coachmike
Posts: 137
Joined: Oct 2011

thanks for checking in my results will be given to me tue morning around 830 am. still trying to stay busy and no be so consumed by the upcoming doctor visit. Feeling good and hoping for the words we all want to hear. thanks again for checking up  on me.

 

Mike

 

onlytoday's picture
onlytoday
Posts: 585
Joined: Jun 2010

Mike,

Hope you get great scan results!  Just want you to know that another one of your buddies is with you on this.

Praying for you,

Donna

coachmike
Posts: 137
Joined: Oct 2011

thanks honey, your so sweet. eveyone on here is so supportive and great.  its so wonderful to have friends who are praying and thinking about you as WE all are in this fight together!

 

MChantal's picture
MChantal
Posts: 96
Joined: Apr 2013

Absolutely terrific news!!!! So happy for you Mike! :)

coachmike
Posts: 137
Joined: Oct 2011

I couldnt wait to get back home and get on the message board to all of you. Today my onc informed me of the results a day early. Ended having to have the appt moved for conflicts so I went in today. AND THERE IS STILL NO EVIDENCE OF DISEASE!!!! I am beyond relieved ecstatic overjoyed overwhelmed ,etc. Words are hard to find right now. I am 1 year in remission from Diffuse Large B Cell lymphoma. This battle has been a victory for all of us, because without your love and support there is no way I could have overcome this disease that tries to take so much. I will always be grateful for you all. Thank you for everything!!!

Mike

DadysGirl
Posts: 306
Joined: Aug 2011

Congratulations Mike. Extremely happy for you and your loved ones...

Shoopy
Posts: 210
Joined: Jul 2013

Excellent news, Mike!  I am so happy for you...and hope to join you in a year!

illead's picture
illead
Posts: 489
Joined: Aug 2012

What a relief for you.  We are so happy.  It is such a blessing, one I know none of us take for granted.

Congratulations, Bill & Becky

allmost60's picture
allmost60
Posts: 3155
Joined: Jul 2010

Hi Mike,

 That is "GREAT" news! I'm so very happy for you. Enjoy the rest of summer! Take care...Sue

(FNHL-2-3A-6/10-age 62) In remission

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

THERE IS ONLY 1 WORD FOR THOSE RESULTS (let me get up on my soapbox first).....GREAT !!!!

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

Congratulations, Coach, and (early) Merry Christmas!

 

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

That is great news and I know you are relieved to say the least!  We are grateful for you also and each other.

Do something to celebrate!

Hugs - Jim

Marydutton
Posts: 14
Joined: Feb 2013

Awesome news!!!!

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